Thanksgiving

I could wax poetic about how thankful I was this Thanksgiving for things like my health, and for the ability to enjoy my family. Or, I could tell you about the hilarity that ensued in preparing the meal. Of course, I wouldn’t have been able to enjoy the entire process of preparing said meal, if I wasn’t exponentially healthier than I was last year. Last year, I was still so sick that, the following day, despite pretending I was totally cool with washing every dish, and with chatting and laughing, I had to sleep all day long. Literally. For two days. My poor recovering brain just couldn’t handle it.

Anyway, this year, I prepared two pies, two cheesecakes (more on that, shortly), Strop Koekjes, and the potatoes. I was a girl on fire – in my nether regions. I would’ve made the cranberries too; but, ironically, I had to stop, mid-prep, for a surprise trip to urgent care for yet another UTI. Cranberries clearly don’t prevent UTIs, folks.

As I believe I’ve mentioned, I have yet another mysterious chronic condition in which my tropical island (a girl I knew once called her vagina this, and I like it), has taken a liking to developing UTIs, basically all the time. No sooner do I wrap up the antibiotics for one, but another develops. I even got to enjoy a ninety-day course of antibiotics, but lo and behold, the minute I threw out the empty bottle, a fun new visitor bivouacked on my beach. My island likes visitors. It must be the tropical climate.

Totally stolen image. But, have I ruined tropical vacations for you yet?

Totally stolen image. But, have I ruined tropical vacations for you yet?

Yes, I know how to wipe. Yes, I know how to wash. Yes, I know all the S-E-X rules. I follow them religiously. It’s like a decontamination shower every time I use the bathroom, or heaven forbid, any “foreign visitors” travel to my island. It’s gotten ridiculous. There’s surgical prep soap in my shower, for cripe’s sake!

 

The doctor is baffled. We’ve tried less washing. More washing. This antibiotic. That antibiotic. This test. That test. This uncomfortable procedure. That one. And everything in between. Did you know that my bladder itself can hold a massive amount of urine? It’s remarkable, actually. I found this out when they put electrodes in there and filled my bladder with saline and made me hold it as long as possible, before emptying it, in front of a nurse and a med tech, in a toilet chair. It was super fun. I recommend this procedure to anyone who has a free morning and no pride or sense of dignity.

So, that’s what interrupted my cranberry prep, and why I didn’t make them. Collin made them. Collin! My child. My itty-bitty, infant, made part of our Thanksgiving dinner, with a food processor. I am as shocked as anyone. I am shocked both because he is old enough to participate in this part of the ritual preparations of a traditional meal, and because he was willing to tear himself away from the Legend of Zelda long enough to press the pulse button on the Cuisinart. Not to fear, he’s apparently not old enough to wash the Cuisinart. He left that part to the real grown-ups.

Yeah, it's a picture of a picture! But, I got a new laptop and it's not synced to the full photo album for some reason. I couldn't let this post go by without remembering how my infant tiny baby looks, in my mind, when he helps cook.

Yeah, it's a picture of a picture! But, I got a new laptop and it's not synced to the full photo album for some reason. I couldn't let this post go by without remembering how my infant tiny baby looks, in my mind, when he helps cook.

More hilarity ensued that night, when my hypochondriac, anxiety-prone son came out of his room to report that his stomach felt “weird.” I did what I like to call, “gently ignored him.” Because of his sensory issues, he has a difficult time determining what, in his body, is a big deal, versus what is nothing. And, because of his genuine anxiety, he gets nervous over the slightest issue. This means that he complains about everything.

We’ve started calling him Cameron. He doesn’t like it. Nor does he get it, since he’s never seen Ferris Bueller’s Day Off, but it suits him.

"I fell like complete shit, Ferris. I can't go anywhere." Take out the "shit," and it's Collin. He says, "bleep" instead of swearing. I don't know whose child he fucking is, sometimes.

"I fell like complete shit, Ferris. I can't go anywhere."

Take out the "shit," and it's Collin. He says, "bleep" instead of swearing. I don't know whose child he fucking is, sometimes.

In other words, he’s always feeling “weird.”  He’s always showing me something that he thinks looks off, or complaining about something distressing. I’ve had him show me his chest rising and falling and ask me, “why does it look like that?” The response, “because you are breathing,” only causes more questions, such as, “but, if I do this, it does that. Why?” So, I’ve learned that the best approach is to assume he’s fine, and just hope for the best unless my mommy radar goes “ping.”

It didn’t; so, I told him if he felt sick, to go to the bathroom. Of course, he sat in front of the toilet for ten minutes, looking like a pitiful puppy that’s been locked in the laundry room after peeing on the rug. I patted his little head when I walked by to grab something out of the bedroom, but he still looked fine. After all, we’d heretofore (always impressive when you can use that word, right?) won the vomit lottery. My child may have autism, and he may have ADHD, and he may be endlessly frustrating and perfect, but he has only had the stomach flu ONE TIME!

Surely, you know where this is going.

He sleeps in a loft bed.

After ten minutes in the bathroom, he went back to bed.

To his loft bed.

He didn’t make it to the bathroom.

I’ve lived in fear of this day since we put that loft bed into his room.

But…

He had a bucket in his bed with him, just in case, because he’d had a cough all week. He’d been gagging, occasionally. That bucket should be bronzed as a lifesaver. The mayor should give it a commendation.

Spaghetti with red sauce and milk. Thank god for that bucket.

After the puke, he was fine. Totally fine. Like kids are. But, he was fine in a way that I cannot describe. He was fine like, “what did he eat?”

Oh my God, was it the milk? The milk that I just used in the cheesecake? See! Veganism is the best! At least I won’t vomit! But, the guests! Shit. Shit. Shit. I’m finally healthy and strong enough to be Suzy Homemaker and I am going to poison everyone. The fucking thing was perfect too! It didn’t even crack when it cooled.

I scrambled to the recycle bin to check the expiration date, which was the middle of December.  My not-so-helpful vomit-breath son could only say, “I guess that I think it tasted a little weird; but, that was only towards the end of dinner, after it sat out for a while.” I wanted to shake him; but, I thought would be a little heartless, after ignoring him. But still, it either tasted weird, or it didn’t. Gah!

Since I think milk tastes, and smells like Satan’s asshole, I’m no help in determining its freshness, especially from the dregs of an empty carton, pulled from the recycle bin. I’ve had a strong aversion to milk since I was a kid, even before being vegan. My mom used to try to trick me into drinking it, you know, because it’s good for you, by putting it in a covered cup, and mixing it with Vernor's. Blech! It’s one of the things she did that I think was from a good place, but it’s gross. Milk mixed with Ginger Ale? I could gag just thinking about it.

Anyway, do I have to make an entirely new cheesecake because of the vomiting? Why do children vomit at the worst times? Or, is there a good time for them to vomit?

The only way to know was to potentially poison my guests, or to make someone eat some before they did. Bryon took one for the team; but, I made another one, anyway, while he was on vomit watch. Since he figured he was in for a penny, in for a pound, he kept right on eating it, regularly, until “real” serve-up time. He didn’t barf, so we ended up with two black cherry, cookie crumb and fudge swirl cheesecakes.

I guess that’s not so bad of an outcome. The mystery of what made my child vomit may never be solved, but it wasn’t the cheesecake. I choose to blame an early visit from Krampus. He’d better shape up! Since he only vomited once, I chose not to believe that he was going to be passing the stomach flu to me, Bryon, our neighbors, their mother-in-law, two other children, and an infant.

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But, the best part of our Thanksgiving preparations was probably karma’s punishment (or warning, depending on how you want to see it) for Bryon, when he tried to prep the barbecue for smoking the turkeys. I flatly refuse to touch or have anything to do with meat, in our house, even on holidays. I won’t even touch the dishes. It makes my stomach turn. Because Bryon sees days like Thanksgiving as, essentially, a meat party, he’s happy to tolerate my idiosyncrasy in this matter.

However, when he went to prepare the barbecue, the universe of the animals had prepared a revolt for him, in the shape of a rat. We prepare so little meat in our house, especially on the barbecue, these days, that a rat had taken up residence in the base of the barbecue, and made a nice little nest in the smoker. Seeing this nest, I learned two things: a rat can make a nest out of just about anything (ash!?), and that they poop a lot, and don’t mind sleeping in it (ew).

He was quite displeased at being disrupted by Bryon opening the barbecue, and felt a little concerned at the thought of it being lit on fire. Mr. Rat scurried about, back and forth between the smoker and the barbecue, rushing around, trying to figure out a way to not be evicted, while Bryon tried to figure out a way to evict him, without lighting the barbecue, and cooking him out. It was quite a sight to see, and hear, as Mr. Rat scampered quite loudly. Plus, he had me, ever-so-gently (of course) insisting that Mr. Rat be gently coaxed from his home.

Poor Bryon has to put up with such a crazy lady for a wife. He asks for so little. Turkey on Thanksgiving! Is that too much to ask? He gets rat in the barbecue, and a wife who insists that the rat takes precedence over the dead meat. That man is a saint.

rat+meme.jpg

I was concocting alternate turkey preparation plans, in my head, as I was not about to let him hurt the rat, despite it being disgusting, if it came to a showdown. And, Bryon was quite perplexed at how to remove a rat, and his nest, without harming him, and without infecting our guests with the hanta virus or the bubonic plague.

It turned out that banging on the barbecue for a while, and leaving the lid wide open for several hours encouraged Mr. Rat to relocate. He packed his little rat bags, and found a new residence pretty quickly. I’m hoping he moved to a new neighborhood entirely, and didn’t settle close-by. Bryon spent hours scrubbing the barbecue and disinfecting it, as to not kill anyone with plague.

The meal turned out quite lovely and we had a full turkey leftover. I told you that Bryon gets a little excited when we actually cook meat. No one vomited from cheesecake, or anything else. And, no one contracted the hanta virus, or the plague. There were no pestilence visitors. My antibiotic worked…so far. I was able to cook, and clean up. And, the next day, I was strong enough to help put up Christmas decorations all day, after a quick run, and some weight lifting.

Lots to be thankful for.

A Sh*tty Post

Confession: This story is almost a month old…it took me that long to get my shit together and finish this! Sorry!


But….

I’m ready to talk about something totally, absolutely, and ridiculously, humiliating. Are you ready?

No, really?

Are you ready?

Because, it’s about to get all kinds of gross, and personal, in here.

I know that I share here. It’s a nice outlet. My sister has called my “outlet” self-indulgent, which, at the time, I tried very hard to take as the insult it was intended to be. It was hard though, because it occurs to me that almost all communication, except for true listening is self-indulgent. We all want to be heard. So, we talk, write, shout, and send smoke signals.

I know that I’ve been silent for a while. I’ve been…processing…shall we say? I get to do that. I mean, I’m a little fucked up. In the past 36 months, I’ve had my head shaved twice, my skull cracked open, and titanium rammed mere fractions of a millimeter from my brain.

As a quick addendum to that titanium; I’ve recently learned that, at any given moment, my body may decide that the titanium plate and screws, are no longer welcome. It may begin rejecting them, by propelling out the screws at rocket-ship speeds.

Okay, they will propel at slow, glacial speeds. However, any speed at which a screw propels itself from my skull, and through my scalp, feels too fast. The first sign of this will be that I’ll feel the fucking screw…in…my…scalp! Well, I’ll feel it coming through my scalp, like a This Old House episode gone horribly, horribly wrong.

Just, imagine me, brushing my hair that I haven’t cut in two years, because it’s now my security blanket (we’ll get back to that, and why I look like a filthy bag lady – not Rapunzel) and, wham! Screw poking through my skin!

Now, imagine how often that I check my scalp for suspicious lumps. I’m like a pubescent boy who feigns concern for his girlfriend’s breast health. A number with exponents per times per week, I ask Bryon, “was this lump here before?” I ask him so often, in fact, that he always says, “yes,” without even checking. How dare he not take my irrational concern seriously?

Aside from the whole surgery and imminent screw loose (yeah, I get it) thing, I’ve also lost my family. Lost is a weird word choice. I shed them like an extreme form of molting, but the feeling of loss is still there. I can’t exactly eat my family, the way a lizard eats its skin when he’s done shedding and growing. That’d be gross. And, criminal. And, I don’t want to. I’m a vegan.

My therapist suggested that I consider myself adopted. Not to diminish the experience of true adoptees, of course. Still, lots of parents either give up, or are forced to give up their children because they are unable to either physically, or emotionally, provide for them. I’m not much different in that regard, except that I’m an adult. So, now I’m adrift in the world.

Parentless.

That’s a lot of shit to deal with in a relatively short amount of time.

I’ve gotten side-tracked.

For a long time.

Sorry!

I promised you a gross confession.

Physically, I’m doing the best I’ve been doing since I got sick. Brace yourselves: I’m running. No shit. I’m capable of running! R-U-N-N-I-N-G again! Not a lot. And, not fast. And, not every day. But, every step I take that is faster than a walk, is like the greatest step I’ve ever taken. It’s how I imagine it must’ve felt to walk on the moon.

I'm not saying that I high-five my WW poster after treadmill runs, but I high-five my WW poster after treadmill runs.

I'm not saying that I high-five my WW poster after treadmill runs, but I high-five my WW poster after treadmill runs.

I’m on the least amount of drugs I’ve been on in at least three years. In fact, It’s the first time that I’ve not been on a daily opiate regiment. But, when it’s bad, it’s still really bad. I still have an opiate prescription for when I get a massive headache that can’t be controlled by other means, especially because my headaches, when I get them, last for days, because they can be caused by my wack-a-doodle intracranial pressure, and that pain can’t be controlled by a Tylenol.

But, there’s a not-so-well-kept secret about opiates: they back up your poop system. For most people, with normal colons, this is no big deal. When they are done taking them, they eat a couple of prunes, and they are good to go. This is also no big deal, because most people who take opiates don’t need to take them for very long, or very often.

I wish I had a regular colon. Sometimes, just seeing the Oxy bottle in the drawer is enough to block me up for a month. My colon has a mind of its own, and it is susceptible to the power of suggestion. I think it might be a bit of a hypochondriac, frankly. If it even hears of a negative condition, it catches it. Yeah, that’s right, my colon can hear. Can’t yours?

A Pepto commercial for traveler’s diarrhea comes on, and my colon becomes convinced that the mailbox equates to a trek through India, stopping to drink from a well that pulls ground water from a stagnant creek that the locals use to rise the diapers of children infected with cholera. Strangely, I can see hundreds of commercials of Jamie Lee Curtis and her lady-yogurt, and I never find myself being regular.

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This would be no big deal, except that I have (confession time) yet another rare and, this time, humiliating, medical condition: bile salt diarrhea. Bile salt diarrhea can be caused by a number of things, but it’s a relatively rare side effect of removing the gallbladder. Guess who has two thumbs and has had her gall bladder removed?

It’s hard to take a picture of yourself with two thumbs! Ha! This is from me grading the other day, anyway.

My god, my thumb looks HUGE!

My god, my thumb looks HUGE!

 

One of the functions of the gallbladder is that it regulates how much bile the stomach uses, and then gets dumped into your intestines to continue digesting your food in the next stage of digestion. Without it, in some people, the stomach has no idea what to do when food hits it; so, it dumps bile straight into the intestines. Because the intestines are not equipped to digest huge amounts of bile, it rushes, straight through your intestines, along with the undigested food. The stomach has a difficult time turning off the bile dump, and you will continue to pass this bile, rapidly, until it turns off. Of course, you’ve smartly stopped eating by now, because you’re already in the bathroom. Plus, it’ll keep dumping bile through so long as you are eating, and your stomach is sending the signal that there is more food to digest.  

As this problem became more prominent, I sometimes ate, practically, on the toilet, as that’s how quickly my food passed. I never held anything in longer than 15-20 minutes. We are a family with no shame (okay—gross, sometimes); so, we would (and still do), occasionally, play the corn race. When we eat corn, we see who “sees” the corn again first. I always won. By days. Because I always saw it again within minutes, I continue to be the reigning corn race champ! Undefeated!

I have to take my victories where I can get them. I’m not exactly going to win any Olympic gold medals in my lifetime.

As you can imagine, this is a relatively difficult problem to diagnose. You go through the following stages:

Did I seriously not make it to the bathroom last night? That was totally embarrassing. Hope that doesn’t happen again.

  • OMG. Again?
  • Again?
  • Wait. This is ridiculous.
  • I’m too embarrassed to tell the doctor that I shit myself…regularly.
  • Okay, I should tell him, because I saw an entire undigested piece of pizza last night. Am I getting any food?
  • Hang on…if I’m shitting everything I eat, why are my thighs still so big?
  • Nah, I’ve got this under control! I can drive the kid to school, without a towel under me, so long as I don’t eat before noon, and not after 9 pm.
  • Wait…that’s not normal.
  • Okay, sucked it up, and the doctor said to add bulk fiber and take Immodium. He didn’t seem phased that I have to take 20 to make it stop. 20! Hmmm. Can you OD on Immodium? Stupid military medicine.
  • Whelp, it’s been six months, and now, I’m wearing Depends to a job interview. Is this a reasonable solution? What if I get the job? Is this the long-term plan? I can’t work two hours away, and wear Depends!
  • Do Depends show through these pants? The students will totally be able to tell.
  • I’m so fucking hungry. I can’t go on not eating through a full day of teaching and driving, just so I don’t have to wear Depends under my clothes!
  • Back to the doctor. Fucking military medicine.
  • Ugh. Gastroenterology. Of course, I have to do a lower GI thing with the poop scope.
  • Phew. This is fixed with a simple med. Why couldn’t this have been easier?

So, yeah. It’s easily controlled. One simple med, and I’ve never had another problem. It slows down the digestive process, and I’m totally fine. But, if I take the digestive slowing med, and I have a headache that week, where I have to take opiates, I’d never go to the bathroom again. I think my colon would rupture. I say that jokingly, but in reality, it’s a possibility. If I had to take opiates, for say, weeks on end, and I took my slowing med, I could actually die, eventually. I have to be super careful to monitor the ol’ pooper.

Stool softeners: not just for post partum mommies.

After a headache that requires opiates, it takes anywhere from a week, to a month (not even kidding) to go again, “naturally.” We call the ensuing gut swelling my poop babies. And, they hurt. I can’t bend, twist, or move, because they get pretty fucking big.

I’ve learned that the best thing to do is to get some control over it, pretty early, before I look three months pregnant with Collin’s poop baby sibling. Ex-Lax has become my friend. Barring that, Ducolax suppositories. Please pray for me, that it doesn’t come to the second solution very often. They suck. If you’ve ever needed one, you know why. Dear Hera, the fire.

But, Ex-Lax can take more than one dose, and it’s a delicate balance. A very delicate balance.

Take a dose. Wait twelve hours. Nothing.

Take another dose. Wait twelve hours. Still nothing. Ponder whether you want to live or die.

Take another dose. Wait twelve hours, and know you are moving towards the Ducolax in the morning. Also know that the third dose (or the previous two) can open the gates of hell at any moment, and if it does, it will be horrible because it took so long.

Wake up at two a.m. and hate your very existence.

This is what happened to me over the weekend.

From the hours of two a.m. until nine, I pooped. I pooped everything I’ve ever eaten, in my life. I pooped everything everyone has ever eaten in their entire lives. Only it wasn’t like this:

 

At least not at first. It’s like passing softballs through a straw, until you get to the end; when all of the sudden, it’s like Jeff Bridges on the toilet, and you wish you were dead. It’s difficult to determine which is worse: softballs or Jeff Bridges. Softballs come with cramps that and blood; Jeff Bridges comes with, well, Mississippi Mud.

Then, you fall asleep on the couch, cold and sweaty, and you can start all over with the digestive slowing meds. For the next week or so, you get to deal with blood and the dreaded “fissures.” Seriously, how much do you know about me, right now?

 

I switched my insurance to Tricare Standard, instead of Prime, which gave me a new primary care provider. She pointed out that my digestive slowing med came in a different format, which has changed my life once again, and made it even more effective, and made it work even better, if that was possible, so I’m gloriously happy. We’ll see what happens the next time I have to take an opiate.

 

But, I’ve got a system to manage my co-“conditions.” It may not always be a comfortable one, but it works. It may sometimes require Ex-Lax and me laying on the bathroom floor, and praying that if there’s a God, I can have a serious talk with him about why he made me out of spare parts. It also may make me eternally grateful for steroid cream – did I mention that crapping straight bile is equivalent to vomiting bile out of a hole it’s not designed for, so it causes surface burns to your skin? Yet another time I find myself eternally grateful for Big Pharma and western medicine.

 

So, there’s my gross confession story. As I was lying on the couch this weekend, cold and clammy, I thought to myself: someone would love to know about this glamorous part of being sick that has previously gone unreported. Am I right?  

 

This is Spinal...Damage?

Sometimes, I wish I weren’t right all the time. At least, I wish I weren’t right all the time about my own body. Wait, no; Judy Blume taught me to trust my own instincts about my (female) self. Yay periods! No, that’s still not right.

Okay, mostly I wish I weren’t right about predicting when something ridiculous is wrong with me, and I that I may need more surgery. Or, that I’m randomly about to become the weirdest case of “sick” or “falling apart” in the history of some doctor’s caseload.

When Collin was a baby, I had to have my tonsils out in an emergency surgery, for example, after having an abscess on them drained in the emergency room, because it had become so swollen it was compromising my airway. By the morning, it had re-filled with so much fluid, that I had to be wheeled back to surgery within an hour of my follow-up check because my entire airway was blocked. When it comes to finding ways to be messed up, I don’t screw around; I go hard.

Since I started this ever-so-epic journey of Chiari, another thing I was right about:

*Insert Digression*

Dear Doctor-First-Neurologist-Who-Told-Me-I-Was-Fine,

 I wasn’t.

Sincerely,

Patient Who Told You So

 *End Digression*

Anyway, since I got sick, even before I knew it, I have also been complaining about very specific neck pain. I can point at two spots, one worse than the other, right down to the centimeter, that bother me. And, as it turns out, I have been right all along about those things too.

This is how these complaints have traditionally been received….

“Rachel, Chiari comes with neck pain. It’ll feel better once you are decompressed,” say both surgeons for both of my surgeries.

Cue Rachel feeling trusting of her surgeons and fully believing that it’s true.

But my neck pain didn’t, and hasn’t, improved. And, post-operatively:

“Rachel, you’ve had Chiari surgery. Your neck muscles were opened like a curtain. Twice. You’ll have some post-operative pain for a while. Give it some time. Plus, your neck will always be a bit weak,” say both surgeons for both of my surgeries.

Cue Rachel feeling trusting of her surgeons, but at the one-year point of surgery #2, a little suspicious. Mostly because she can’t even wash her hair without crying.

So, I talked to my pain management doctor. He’s the very bestest doctor in the whole world, so I really trust him, and I know that he listens to me. Hell, even if he’s not, he’s the best faker in the world. He’s really good at making me feel like he’s listening. I imagine that in his outside life, he’s used up all his listening skills on his exhausting patients, like the ones I can hear through the walls while I wait, begging for Oxycodone because they have indescribable pain in a different spot than last time, and his wife wants to murder him because he can’t remember to bring home the damn bagels that she just called him about on the ride home.

Anyway, I’m not on any pain medication right now, so my pain is, not currently what you’d callmanaged.” It’s out there in the open, screaming to be heard. It’s basically having its own little pain pride parade every day. But, he’s still trying like hell to help. He’s concerned. I’m concerned. Bryon’s concerned. I think the mailman, who is forced to witness my walk of (non)-shame to the box in my pajamas every day, is also concerned.

Don’t get me wrong, I didn’t expect no pain for the rest of my life (not that I didn’t hope for that scenario – don’t all Chiari patients long to be a success story that does something amazing like running a marathon again, or being in a Wheaties commercial?); but, I did hope to be able to sit upright for larger portions of the day.

I explained for the billionth time, to him, the few spots on my neck that were agonizing, and stressed that I’ve said this at every appointment to every doctor. And, I told him that there are other things that are freaking me the fuck out, now too. My arms are going to sleep, sometimes for up to 18-24 hours at a time. I get dizzy when I look up, sometimes to the point of falling over. I can’t see if I look to the left or right too long. My legs are week, especially my left one. My left hip hurts so much sometimes that my Tiny Tim impression is far too true-to-life.

He’s known that my neck has hurt all along, and he’s done plenty to try to ameliorate it, from physical therapy, to suggesting a medical pain implant device, as a last resort. But he did a full exam and was pretty shocked at the extent of the new weakness. So, he sent me for a battery of tests and images that made me feel like someone was finally taking it a little more seriously than, “this comes with Chiari.”

The most “fun” test was the EMG, because everyone loves to be stabbed with tiny needles to see how their nerves are functioning. Spoiler alert: my nerves seem to be functioning okay. But, this is good news, because we were temporarily terrified of a potential MS diagnosis. Phew.

My surgeon likes to say:

“your spine looks great! I wish I had this spine!”

This assessment has perpetually annoyed the fuck out of me. No matter what specific question I had for him, his answer was always that my spine was great. Great. Fantastic. Great. No issues. Great.

Hmm…

That seems so weird for someone who has had neck issues since day one. It was, in fact, the first thing that sent me to the doctor, aside from the headache. My neck pain spread so far down my shoulder and neck that my whole arm became useless. I couldn’t lift my work bag. Thanks to fantastic military medicine, I was prescribed Motrin, and I was miraculously healed.

My surgeon is a fantastic surgeon, but he has a reputation for not really “cooking stats,” but for keeping his stats the way he wants them. This means that if you go see him for Problem A, he won’t “let” problem B pop up on your case, because he doesn’t want to mess up his high success rate on his surgical stats. So, no matter what you come up with on your imaging, he’ll tell you that you look great.

I’m a Chiari patient. He fixed my Chiari problem. I’m not a spinal patient. Not even if that Chiari caused the spinal damage (which it obviously did). Chiari fixed. Job done.

This can be a problem in sick-person world, because finding a spinal surgeon to take on someone else’s work is, well, challenging. Duh, they don’t want their hands dirty with someone else’s trash stats either! Meanwhile, patients suffer.

And, in case you hadn’t guessed, you don’t want the Jiffy Lube of spinal surgeons messing around in there, especially at the C-spine level. Your C-Spine is the level between your neck and shoulders. A tiny slip and you are paralyzed from there below, including breathing. Hooray! Jiffy Lube surgeon means the potential for diapers and a ventilator forever! At least I won’t be able to say my neck hurts, right? Not funny? No sad clown?

So, drumroll….

I get all of my imaging results back and what do you know? My C-Spine is rather fucked up. In fact, I’d like to take a moment to congratulate C3 and C4 right now for being the only two vertebrae, currently, holding down the fort. Great job, guys. A round of applause.

C-1, which is the vertebrae that my first surgeon shaved to make room for my brain, whelp, that one is deteriorating pretty badly. C5-7 are also degenerating, and the discs at most of these joints are bulging, especially badly at C7.

The insane part is that these are the exact spots that I point to, every time for the doctor. Every. Fucking. God. Damn. Time. And, I always say, “This spot is the worst,” at C1. Always. At C1, I always demonstrate how if I hold my head a little differently, I can relieve some of the pressure, but it doesn’t help for long. Hmmm, wonder why that is! Because that’s where my amazing (I’ve decided to compliment it from now on, in hopes that it will be nicer to me) brain used to be sitting!

Grrrrr.

Did you know, that Chiari is a progressive condition? That the longer your brain, which is fucking heavy, sits outside your skull, and rests on your SPINE, where it’s not supposed to sit, it does damage? It’s a damage domino. I was 37 when I was “fixed” the first time, which failed; 38 when I was fixed the second time. So, I was 38 when the weight of my brain finally got lifted off my spine. For 38 years the weight of my brain rested on my spine. No shit there’s a bunch of damage there.

So, what to do?

Well, that’s the million-dollar question. I have no idea. I’m scared right now. I have a bunch of information that I have no way to fully figure out, at the moment. I’m relatively certain my current surgeon will say what he always says, but who knows? With a report in hand that says my spine isn’t great, he may not be able to say that. Of course, doctors like him like to say things like, “this kind of thing is normal,” especially for women my age. Since this damage is progressive from reports before, I know it’s most certainly not normal, my man.

Um no.

Most women my age can function without a C-Collar. Just sayin’, doc. Not going to get away with that one. But, I don’t want to rush into spinal surgery, either. Fusion is the most common spinal surgery, but at the C-level it’s a big damn deal.

And, it’s relatively rare at C-1. There are significant risks of fusion at C-1, because C-1 holds your head ON your neck, and makes it turn. It means that there’s an almost guaranteed reduction in mobility and range of motion, usually up to, or at least, 50%. Hooray! Because of this, it’s usually only done when required; for example, when your neck is broken, or you are literally decapitated internally. It’s also done when, wait for it, your neck bone (yeah, like mine) deteriorates. Booyah!

Ding! Ding! Ding! What does she win!? The high probability that she’ll soon be filled with neck hardware, new scars, another shaved head, and the increased frequency of surprising her from both behind and all sides. 

There’s a pain implant device, but is that just a Band-Aid until my neck gets so bad that I can’t move at all? Then what? What if there’s nothing left to fuse at that point? Do I go back on pain meds and hope for the best? Oy!

Oh, and by the way, my hip hurt because I had broken it, and never realized it. Yeah. For real. I broke my damn hip! Who the hell does that! Apparently me.

Okay, I’m being dramatic.

But, it’s mostly true. Apparently, I broke a big ol’ chip of bone off my hip and there it is on the X-ray, having had its maiden voyage, and then rejoined its pals on the old SS. Hip Bone! I wonder where that chip was trying to get to?

Now, I don’t feel like such a damn baby for whining about it. The report says that I may have also a labral tear, but meh. I think the broken hip sounds more impressive. I think I’ll adopt a permanent limp from now on.

Bryon says he thinks I have osteoporosis because since he’s known me I’ve broken too many bones, and my spine is falling apart way too quickly for anyone’s taste. And, he’s all braggy about having never broken any bones. I think that instead of worrying about me having osteoporosis, he should worry about which of his bones I’m planning to break for making fun of my pitiful weakness. Except I’d probably break something trying to do that, so that’s a terrible idea! And who gets to almost forty without breaking a single bone? Didn’t he play as a child? Come on! I was a dork, and even I broke two bones as a kid! Lame ones, but still.

We have about a jillion doctors’ appointments coming up to talk over options and what to do in the next few weeks, and I’m hoping for more answers, but I know this process. It’ll leave us with more questions and more answers than before. I know we won’t know anything more. I know that it will be months before I know what’s happening. I have names and numbers of more surgeons for second and third opinions, if my surgeon decides to be a butthead; but they are all, of course, out of network. Ugh. But, it’s the beginning of the process.

So, away we go again! Wish us luck.

I leave you with the image of this insanity, if only because of how happy my boy and I look. Bryon noticed that every time he tickled Collin, I laughed too. Collin’s laugh always gets me. Every. Single. Time.

 

I may not be able to sit up for more than a few minutes at a time, or get dressed very often, or comb my hair, or put on my makeup, but I can let my boy lay next to me and listen to him laugh.

So, ignore the up-the-nose-shot, and how ugly I look, and enjoy mommy-son joy.

How to Be a Shit Mom: Lesson 1

I keep forgetting to post about this insanely embarrassing, and ridiculously hilarious episode that happened, well, several weeks ago now. I’m always good for a humiliating tidbit, right? I’ve been lax on the blog of late. I’ll try harder!

My son, as we all know, has autism. This means that he relates to the world in a way that is different than you or I might. Like any other kid, just when you think you have something figured out about him though, he goes and pulls something out of his sleeve and says, “Just kidding! You know nothing! NOTHING!”

Oh, and also, it feels like Collin likes to add, with an imagined evil cackle, "You fools!" just to make us feel even less like we are on top of the whole master-of-anything parenting game. Autism has a way of making you, as a parent, feel like not only are you behind the 8-ball, but that you have no idea where the 8-ball is, that maybe there is no 8-ball, that maybe your child is playing pool, and you are playing shuffle board, or perhaps they ate the pool balls.

For example, a traditional trait of autism is that they tend see the world a very rule-based way. Of course, this doesn’t mean all people with autism do this, just that many do. Collin is very typical in this way, as far as this trait.

He tends to establish, and follow, literally thousands of seemingly arbitrary rules, especially ones that he makes up himself. Once we can figure out what rules he’s established for a situation, we can usually help work with whatever is happening in his head. Often, a seemingly confusing refusal to cooperate may be tied to a rule that he's established in his head that we just haven't figured out, or that he hasn't been able to communicate to us.

We can also usually help control undesirable behaviors, like elopement (a fancy word for running away, that is associated with autism) with rules, which his little brain very much wants to follow. It’s a perk that the autism gods give us parents, in exchange for life-long “tantrums,” affectionately called “melt-downs.”

Anyway, Collin loves climbing. He always has. When we lived in Alabama when Bryon did SOS, and Collin was about 15 months old, he was like a Spider Monkey, climbing to the top of the big kid play structures. I stopped caring about the eye rolls from the helicopter moms who thought I should keep him on the ground, which was impossible anyway. The kid was made of suction cup feet and Velcro hands. I don’t think I could’ve knocked him down if I tried. It would’ve been like peeling a price tag off a vase without Goo Gone.

We have a tree in our backyard that is very, for lack of a better word, branchy. It’s especially climb-worthy because we have shitty lawn maintenance service here at Tierra Vista properties. Well, that's not super clear. TVC has a lawn maintenance contract with an outside provider, that takes approximately 2-3 days to mow a set of lawns that could be mowed in one day; but for tree services, they rely on their regular crew, or on additional contracts, which means you have to call management and make a request.

We’ve had half a dozen trees fall this year, in our neighborhood, due to disease, and the maintenance crew that I spoke to about it was very alarmed when they finally came to check out our trees (after six calls to the management to force an inspection). His cries of protest to the management about needing to cut trees before they fall went on deaf ears, because in the management’s opinion, the cost/benefit analysis was simple: it’s cheaper to clean up the mess in the event of a maybe-fall, than to pay for the definite mess of a no-fall. Hmmm….Logic?

I digress.

Back to the branchy tree.

My branchy tree. The window it's up against is my bedroom window. I was clearly sound asleep! And, when I got outside, my son was ABOVE the roof! ABOVE the roof! I almost threw up when I saw him. He was in that bushy part at the top, nearly invisible.

My branchy tree. The window it's up against is my bedroom window. I was clearly sound asleep! And, when I got outside, my son was ABOVE the roof! ABOVE the roof! I almost threw up when I saw him. He was in that bushy part at the top, nearly invisible.

We have a very branchy tree, full of sucker growth. The maintenance manager recommended a serious trim, and said within several years, the tree would fall on the house, being pulled in too many directions. This is a super climb-worthy tree for a Spider Monkey. This means that we have had to establish some rules about how far a boy can climb, without supervision. Unfortunately, this is a vague thing to establish for a little boy, who despite a desire to follow rules, is also equally ruled by Mr. Hyde, who is encouraging him to just “do whatever he wants.” In this case, join Icarus near the sun. So, our rule: climb only to “here,” when we aren’t outside with you, was very easy to ignore, or in Collin’s words, “forget,” or "not understand," or "have a hard time seeing from the ground." 

I was asleep in the house because I’m a negligent mother and I don’t care about my child.

Wait, no. That’s not right.

I was asleep because I had a migraine and I wished for the sweet release of death that never comes with a migraine. I was dressed in footie pajamas, a robe, and two-day old, unwashed hair. I looked so, so pretty. Collin decided to go play in our backyard, and only our backyard, as when I’m not feeling well, he gets the tiny range of about ten feet from our house. Back to that “negligent parent” part, yes?

I don't generally care too much about what people think of what I'm wearing. Wednesday is Wonder Woman Wednesday, for example; I wore this same outfit yesterday to a neurologist's appointment. But, pj's to have my kid rescued from a tree was a little bit pushing the envelope of good decorum.

I don't generally care too much about what people think of what I'm wearing. Wednesday is Wonder Woman Wednesday, for example; I wore this same outfit yesterday to a neurologist's appointment. But, pj's to have my kid rescued from a tree was a little bit pushing the envelope of good decorum.

He’d asked if he was allowed to climb the tree, which happens to be directly outside my bedroom window, where I was lying down. This seems like a no-brainer permission, right? I told him he could go play, but to, of course, remember the rules about height.

“Of course, Mommy.” Famous last words.

An indistinct amount of time later, I hear my neighbor knocking on my back door, saying that the police are here and that my son is stuck in a tree.

Like a kitten.

The police.

What. The. Fuck.

So, I scramble outside. In my pajamas. Normally, I don’t care about that so much. I've watered plants in my jammies, gotten the mail, read a book on my patio. Whatever. But this felt a little different. Right now, I’m scrambling outside in my pajamas to greet a policeman, who is rescuing my feral child, from a tree. I was, a bit, well, embarrassed. I felt like I should have complimented my ensemble with a Coors Light and maybe a Parliament.

The very next day. Showered. Wet hair, but nonetheless, still clean and dressed. Just in case the cop who helped me sees this. See! I do get dressed....sometimes! I swear!

The very next day. Showered. Wet hair, but nonetheless, still clean and dressed. Just in case the cop who helped me sees this. See! I do get dressed....sometimes! I swear!

After some explanations to the police about why I was in pajamas, given with some nervous laughter, and, spoken over my child, who explained that he’d been yelling for me for “a while” (shut up, Collin! Seriously!), we determined that we needed a ladder to retrieve him. The policeman and I carried my ladder from the garage, rescued my child, and we sheepishly went into the house. The "rescue" part is anticlimactic. Sorry.

And that, my friends, is why Collin is not allowed to climb trees anymore.

New Rule.

So, that is how you embarrass yourself in front of your neighborhood, and how you teach your son not to reach too far beyond his station, all the same time.

The Box

Brace yourselves….a long post is coming. It’s been a while, so hang onto your hats! I’ll try to post again this week and clear out the cobwebs. Also, prepare for photos that have nothing to do with what I'm talking about. It was a road trip!

I have a box. Not, the dirty kind, get your mind out of the gutter. A box that I imagine is right beneath my lungs, because whenever it “opens,” I have a panic attack. See, I didn’t use to know that it was even there. But, it stores all the hurts of my bullshit past. Every bit of family nonsense is in that box.

Collin in the first mile of our road trip. He's singing here: "going on a road trip! I love the RV! Laaa-laaaaaaaa Laaaaa-laaaaaa!" It wasn't annoying at all. I lie. It was annoying at mile 1.25.

Collin in the first mile of our road trip. He's singing here: "going on a road trip! I love the RV! Laaa-laaaaaaaa Laaaaa-laaaaaa!" It wasn't annoying at all. I lie. It was annoying at mile 1.25.

I managed to keep it pushed down and locked tight in my chest for decades. I never knew it was so carefully locked because every time it threatened to crack open a little, there was a distraction to help me push it closed. I know now that it’s why I have been so driven. Don’t think, go to school. Don’t think, get another career. Don’t think, get straight A’s. Study harder. Be better. Do more. Join the military. Move more. Do more.

Collin spelunking. I love that word, don't you? It's such a fun word to say. I think it was the Fantastic Caverns roadside stop. He wanted to go to it because it was a ride-through one, and he was all excited. Doesn't he look it?

Collin spelunking. I love that word, don't you? It's such a fun word to say. I think it was the Fantastic Caverns roadside stop. He wanted to go to it because it was a ride-through one, and he was all excited. Doesn't he look it?

Now that I have no choice but to be still, to stop, to do less, the box is blown wide open. There’s more time to think. The box is basically a pile of splinters. I’m trying to build it again, and make it something I can open and close at will, and put the pain in, examine it when I want to, and categorize, sort and deal with on my own terms, but right now, it’s a pile of mess. It’s a disaster zone. It’s why I have to deal with things on my own terms, because my pain is mine, it’s not anyone else’s. And, it’s exploded out of me, like a land mine.

Audience, you are special. I'm letting you see what no one should see of a woman at a certain age: a picture shot from beneath the neck. I'm showing you this because this is me, lying in the far back of the RV, trying to convince the cats that the world, isn't, indeed, ending. I tried telling them we were just driving, but they believed that houses shouldn't move, and that we were all going to die.

Audience, you are special. I'm letting you see what no one should see of a woman at a certain age: a picture shot from beneath the neck. I'm showing you this because this is me, lying in the far back of the RV, trying to convince the cats that the world, isn't, indeed, ending. I tried telling them we were just driving, but they believed that houses shouldn't move, and that we were all going to die.

I just got back from a trip to Michigan (I don't want to call it home anymore; there's nothing "home" about it), which was preceded by several weeks of crippling panic attacks and finally what I call “turtle-ing.” I retreated into myself and became a shell of the Rachel my family knows and loves. Bryon could barely recognize me, but I became dead inside and out, a hard shell version of me, protected from pain. I was so petrified that I was going to be ambushed, or that I’d see someone that I had on armor so thick, that even those that I love, and that love me back, couldn’t get to me, not even to comfort me.

Loki tolerated his fear of death by hiding under blankets while the RV was in motion. This is me snuggling him in a blanket for a brief trip to the front seat. Tell me that's not adorable, and I'll show you a cold, black lump of coal where your heart should be. Also, my grandma's beads, which I have been wearing with everything, including PJs since she gave them to me. She wore them all the time. I put them on as a joke, and she said they look better on me, and gave them to me. I can't believe how much I love them. I think I love them more than any piece of jewelry I own. Literally. I'd save these beads before my wedding ring, in a fire. Maybe. Okay, it's a tie. Also, I have a lot of hair.

Loki tolerated his fear of death by hiding under blankets while the RV was in motion. This is me snuggling him in a blanket for a brief trip to the front seat. Tell me that's not adorable, and I'll show you a cold, black lump of coal where your heart should be. Also, my grandma's beads, which I have been wearing with everything, including PJs since she gave them to me. She wore them all the time. I put them on as a joke, and she said they look better on me, and gave them to me. I can't believe how much I love them. I think I love them more than any piece of jewelry I own. Literally. I'd save these beads before my wedding ring, in a fire. Maybe. Okay, it's a tie. Also, I have a lot of hair.

I wanted, no I needed, to see my Grandma. My grandmother is, outside of my family, the singularly most important human being on this planet, to me. We talk almost weekly. I send her flowers all the time, because I know how much she loves them, and how little she needs “things,” anymore. The only thing keeping me from visiting is my health, and fear of my family. Well, no more. I plan to visit at least once, or twice a year, now. She’s getting older, and I refuse not to be there to see her off, and to spend as much “time,” with her as possible. Fear of family be damned, and I’m getting stronger all the time.

Grandma and I on pajama day, the only two of us who took the edict seriously. I wore those pajamas for the next four days straight in the car, including into two souvenir stops. Damn it, why change? Joe-Bob who works at the petrified rock side-of-the-road souvenir stop doesn't give a damn about my PJ pants, does he? I don't think so. Seriously, that's a lot of hair. And, I hate that sun spot.

Grandma and I on pajama day, the only two of us who took the edict seriously. I wore those pajamas for the next four days straight in the car, including into two souvenir stops. Damn it, why change? Joe-Bob who works at the petrified rock side-of-the-road souvenir stop doesn't give a damn about my PJ pants, does he? I don't think so. Seriously, that's a lot of hair. And, I hate that sun spot.

She was the one who told me, all the time, “write a short story about that,” and while everyone else thought it was a big joke, she meant it. She believed I was talented, and read everything I wrote. She told me that I was a talented artist. She told me that I was smart and beautiful. She told me that she loved me. She remembers every silly story about me, and every memory. She remembers every visit and every annoying thing I did, lest you think I’m on a pedestal to her. She once ran the vacuum, when I was three, just to drown out my incessant talking. She listened to me, bless her, sing, the entire “Phantom of the Opera” soundtrack, once. Dear Lord, that woman loves me. She taught me that I can make a mess, and let me cook in her kitchen. She taught me that I can come to her house and just be me, and be appreciated for it. Without time at her house, I wouldn’t have really thought that was possible. She was, and is, my hero. I love everything about her, and she’s the most wonderful woman I know. I adore her.

More of me and Grandma. Doesn't she look beautiful? I think so. I love her new glasses. I always thought my Grandma was a beautiful woman, and she hasn't changed a bit. I hope I look a little like her, and age as beautifully as she has. 92 years young she is!

More of me and Grandma. Doesn't she look beautiful? I think so. I love her new glasses. I always thought my Grandma was a beautiful woman, and she hasn't changed a bit. I hope I look a little like her, and age as beautifully as she has. 92 years young she is!

I also needed to return to Michigan because my grandfather made me a dollhouse when I was five. He started the tradition when my cousin Erin was born, with an elaborate dollhouse that he built from scratch. He was very talented in woodworking. I discovered that, mine was built from a blueprint (I thought it was from a kit), which gave me great pleasure; because, grandma told me that he had such a great time building it. We went through all her albums looking for the photos she was sure existed of him preparing it, because he did, indeed, enjoy it so much. Alas, no photos. Oh well, found some other treasures in there!

And, my BOY, my SON got to experience my grandma. Of course he's met her. She held him as an infant, and he played with her when he was about two, but now, now, he's MET her. I'm so grateful for that.

And, my BOY, my SON got to experience my grandma. Of course he's met her. She held him as an infant, and he played with her when he was about two, but now, now, he's MET her. I'm so grateful for that.

Anyway, I was in such a panic about that dollhouse. The box in my chest blew open about that dollhouse. I had it at my dad’s for years because it’s not something that is designed to survive military moves. It’s huge, and it’s fragile, and I didn’t want to watch it get destroyed. I figured that when we settled, I’d take it, permanently. But, things aren’t going well, and frankly, I pictured him giving it to his wife’s family and it getting covered in My Little Pony stickers or whatever other thing his “real” grandchildren play with. I just didn’t trust him to protect it anymore, not with the way he views me. I always wanted to restore it, and make it into the beautiful showpiece it deserves to be, but I couldn’t bear it, if it were destroyed like that. And, as our relationship is deteriorated beyond repair, I was afraid if I didn’t get it now, I never would.

Ta-Da! It's not in too shabby of shape. Some shingles have broken off, and some random bits and bobs, but it's in decent shape. I was most concerned about the brass plaque and it's still there. It's engraved with a message from my grandpa. I'm so happy to have it, and I'm so excited to make it my own. Collin is excited to work on it with me. It will be a fun project for us, as a family. And, a way to honor my "grumpa."

Ta-Da! It's not in too shabby of shape. Some shingles have broken off, and some random bits and bobs, but it's in decent shape. I was most concerned about the brass plaque and it's still there. It's engraved with a message from my grandpa. I'm so happy to have it, and I'm so excited to make it my own. Collin is excited to work on it with me. It will be a fun project for us, as a family. And, a way to honor my "grumpa."

It took insisting that I’d contacted a lawyer about my property rights to even get him to respond to emails about arranging a contact point, or about dimensions, which was incredibly stressful. We thought that maybe we could arrange for a freight company to ship it home, and we could fly. Alas, no; crating and shipping a package of that size is well into the thousands of dollars. So, we rented an RV and made a good old fashioned road trip out of it, which was really fun, in the long run. And, my uncle, who I was very nervous about, because other family members told me stole items from me in the past and sold them was the contact point.

Loki has also been enjoying the dollhouse, immensely. Collin has been playing with it relatively nonstop, every time he gets a moment. Apparently, we should've gotten him a dollhouse long ago! He loves all the miniature things, and can't get enough of it. Grandpa would've gotten such a kick out of my boy, I think. Also, isn't my living room rug amazing? It makes a statement. It says one of two things: cool rug, or what the fuck?

Loki has also been enjoying the dollhouse, immensely. Collin has been playing with it relatively nonstop, every time he gets a moment. Apparently, we should've gotten him a dollhouse long ago! He loves all the miniature things, and can't get enough of it. Grandpa would've gotten such a kick out of my boy, I think. Also, isn't my living room rug amazing? It makes a statement. It says one of two things: cool rug, or what the fuck?

I sincerely apologize for believing those horrible things about him, because I don’t think they are true, at least not anymore. And, I’m sorry for anyone I told them to. He was nothing but kind and respectful to me, and treated me like a human, and another human who, like me loves my grandma, and wants the best for her. By believing those rotten things about him, I was doing nothing better than what's been done to me over the years, and I am ashamed of it. I fully admit my error in judgement and simply say that I am sorry.

And, he took care of getting me my dollhouse, safely. I have other suspicions about what happened to that “missing,” crystal now, but it doesn’t matter, anyway. I treasure, greatly, everything my grandmother has ever given me, from a ratty old book, to a piece of crystal. Literally, every item she’s ever given to me, even a bookmark, is treasured. I even bought a pitcher at a Goodwill a few weeks ago, because it was identical to one she had in her purple kitchen, and it reminded me of her. She’s a very important person to me, so her treasures are my treasures, regardless of their “value.” As Grandma would say, "it's special," and it truly is.

Another fabulous moment during the visit. It was so amazing to watch my grandma still be the same woman I remember her being, only with my son. She was interested in his toys, and was entertained by him, never bored or disinterested. At 9 pm, when we want to put old ladies tobed, she was willing to play a silly card game with us, learning new rules and laughing and joking with us. She's an amazing woman, and I love her so dearly.

Another fabulous moment during the visit. It was so amazing to watch my grandma still be the same woman I remember her being, only with my son. She was interested in his toys, and was entertained by him, never bored or disinterested. At 9 pm, when we want to put old ladies tobed, she was willing to play a silly card game with us, learning new rules and laughing and joking with us. She's an amazing woman, and I love her so dearly.

My grandma is such a special person that so many of her things are like that; people around her want all of her things for sentimental value because they remember seeing it in her house from when they were little, or had an attachment to it. I wanted this tray, for that reason. She remembered it when I described it, and sent it to me months and months ago. A completely value-less item that meant more to me than all the valuable items she's gleaned over the years. She used to serve me my lunches on it when I visited, and she'd put a little flower in a vase and bring me Vernors in a can, with a straw, which mademeo me feel like the queen of the universe. Now, Bryon brings me my food on this tray when I'm not feeling well, and I think it works better than pain meds!

My tray! I love this darn thing so much. The recipes on here are hilarious though. It's like a mayonnaise salad with mayonnaise and mayonnaise with more mayonnaise and some mayonnaise. It's really gross.

My tray! I love this darn thing so much. The recipes on here are hilarious though. It's like a mayonnaise salad with mayonnaise and mayonnaise with more mayonnaise and some mayonnaise. It's really gross.

Anyway, until I got my dollhouse, I was a nervous wreck. A trip of this magnitude of planning, expense and stress, only to arrive without the dollhouse would’ve been devastating; plus, I wouldn’t have the dollhouse!

Homer coping with the road trip. His version of coping with the road was to lay on every surface, meow several times, vomit copiously once a day, and then sleep it off.

Homer coping with the road trip. His version of coping with the road was to lay on every surface, meow several times, vomit copiously once a day, and then sleep it off.

Much of my family would like to believe that I’m the epicenter of everything wrong with everything; but, it’s also easy to imagine a different scenario. Such as, the truth. For example, my grandma asked, while we were chatting, about whatever happened to the nice boy I was married to, before Bryon. She said, “all I know is that you were so mean to such a nice boy.” I asked her to explain, and she said, “that’s all I was ever told.” Certainly, she could be confused, she is 92; but, I don’t think she is. First of all, she's still quite sharp; and secondly, it sounds like a typical explanation of what might be perceived of Rachel’s behavior, from the outside.

Grand Canyon in the sunshine with an autistic boy who couldn't stand looking at it for more than a few minutes because there were too many people. Oh well. It's a nice hole in the ground and we had a long drive, so leaving quickly wasn't so bad anyway, right? But, we got to see lots of elk on our walk up there from our campsite, and we named the tiny purple flowers, "Rachel Flowers."

Grand Canyon in the sunshine with an autistic boy who couldn't stand looking at it for more than a few minutes because there were too many people. Oh well. It's a nice hole in the ground and we had a long drive, so leaving quickly wasn't so bad anyway, right? But, we got to see lots of elk on our walk up there from our campsite, and we named the tiny purple flowers, "Rachel Flowers."

However, taken in truth: I didn’t want to marry that “nice boy.” I cried for days before the wedding, to anyone that would listen. I begged for a way out. I wasn’t in love with him. I was encouraged by my parents to go through with it, anyway. I refused to get out of the car, at the Justice of the Peace, until my husband-to-be, practically dragged me out of the car, saying, “you’ll learn to love me.” And then, after six months of a hideous marriage, during which he hit me twice (yeah that), and he got fired from two jobs, I finally had enough, and I got the courage to throw him out. Since I was the one with the money, I bought him out, literally. He threw a fit about how we’d bought sofas and such, setting up a home, and he was entitled to half, despite the fact that I was the one with a job. So, I paid him for half of our stuff, and gave him half our savings account, rented him a U-haul for his stuff, paid for gas, food and hotels for his trip home, and then told him to cut up his copy of my credit card (because he couldn’t get one in his name). I feel that was fair, but I guess that’s mean? Maybe it was mean that he didn’t cut it up, but bought a one-year subscription to Match.com on it, and then cut it up? But, he was such a “nice boy.” Perhaps for someone else, but not for me.

More of Loki coping with the drive. This is him in the back in a moment of peeping out of the nest he'd created for himself, at the back window to see if we were, in fact, dead yet. We had survived.

More of Loki coping with the drive. This is him in the back in a moment of peeping out of the nest he'd created for himself, at the back window to see if we were, in fact, dead yet. We had survived.

The bottom line is this: in a normal family, support for something like that is provided, right? Oh, Rachel, what happened? Are you okay? Do you want to talk about it? It must be hard to face a divorce so quickly after marriage? You did a brave thing. Are you okay on your own, so far from home? Do you need anything? Instead, the narrative is always the same: Rachel’s a royal bitch and a pain in the ass. It’s always been the same. Always. It’s always my fault. It’s easy to scapegoat me, rather than be on my side, or even talk to me about what actually happened, in any scenario. The funny thing about that one is that of five children, all of my grandma’s children are divorced. So, it isn’t like I did some bizarre thing. It’s not like I was the first weird-o. Who knows about that particular example? All I know is after that story, Bryon said, “I get why you are so fucked up.”

Dirty hair, pajamas, a cracker in my lap and taffy in my mouth. A stunning example of road trip chic. Bryon says he took this photo because he was caught off guard at my radiant beauty, and he wasn't joking. I don't know what I did to deserve that man. Also, can you tell I like that headband? Jeesh, Rachel. Rotate your headbands once in a while!

Dirty hair, pajamas, a cracker in my lap and taffy in my mouth. A stunning example of road trip chic. Bryon says he took this photo because he was caught off guard at my radiant beauty, and he wasn't joking. I don't know what I did to deserve that man. Also, can you tell I like that headband? Jeesh, Rachel. Rotate your headbands once in a while!

And, when it comes to the actual family drama. No one wants to talk about the truth. It’s easier to huddle up and point at me. See, she’s at it again. Let’s pretend none of it’s true. Totally makes sense. Because you’ve created a known crazy person, it’s easy to pin it on her. I’d probably do it too. But, when you create a known crazy person, guess what else you do? You fuck her up. You make that box under her lungs. You make it so she can’t function as a normal adult. You make it so she asks her husband forty thousand times day: do you still love me? If she forgets to bring in the mail, she asks: are you mad at me? Will you leave me? You create a person who doesn’t believe she’s worthy of actual love. You taught her that it was her versus you and that she could never be on your team, because she was never, ever going to be good enough.

At the painted desert/petrified forest national park. My family. My reason for living. My reason for getting up in the morning. My reason for finding a way to put that box back to together and making sense of it, organizing it, and not making a mess of what's inside and letting it destroy anyone else, including me. These people matter. I matter.

At the painted desert/petrified forest national park. My family. My reason for living. My reason for getting up in the morning. My reason for finding a way to put that box back to together and making sense of it, organizing it, and not making a mess of what's inside and letting it destroy anyone else, including me. These people matter. I matter.

But, deep down, I know that none of that matters. I have to put the box down, down, down, and close it. I have to enjoy the four days I spent with my grandmother, who was shocked and eternally grateful that we didn’t spend a second away from her. We didn’t go sight see and then visit for dinner, we spent all day with her, for four days. We watched movies, and chatted, looked through albums, and did chores for her. We talked to her friends and made her dinner. She was in heaven. And I was in heaven right along with her. Can you believe that I've never seen "Singing in the Rain?" She couldn't either, so we watched it immediately.

My son and I on our last stop before heading home. He loved the petrified forest because he got to navigate. I loved it because I felt like my hat really "went" with my outfit. Bryon said he wasn't sure that my hat purchase was going to "go" with my clothes. I told him it would absolutely "go" with all of my clothes, that I practically dress like a weirdo. Then, the next day, I wore patched jeans, a blanket shall cowboy boots and my hat and he had to eat his words. The day after that, i wore a flowered dress, and my hat and if I'd have let him, he'd have had to eat the damn hat. I was destined for the hat and the hat was destined for me. I am the hat and the hat is me. We are one. Loco mamacita. But you have to admit, it does go, no?

My son and I on our last stop before heading home. He loved the petrified forest because he got to navigate. I loved it because I felt like my hat really "went" with my outfit. Bryon said he wasn't sure that my hat purchase was going to "go" with my clothes. I told him it would absolutely "go" with all of my clothes, that I practically dress like a weirdo. Then, the next day, I wore patched jeans, a blanket shall cowboy boots and my hat and he had to eat his words. The day after that, i wore a flowered dress, and my hat and if I'd have let him, he'd have had to eat the damn hat. I was destined for the hat and the hat was destined for me. I am the hat and the hat is me. We are one. Loco mamacita. But you have to admit, it does go, no?

She asked us to update her bulletin board, where she keeps photos of her family. As a matriarch of five children, she has more great grandchildren than she can keep track of, practically! So, we went through holiday cards and picture books until she could find the exact right photos for the board. She was so proud to see them all, when she was done. She loved it. She chose EVERY one, completely by herself. I liked watching her have that independence, but also being able to help her, by gathering all her things, and moving the board. She never could've done the task without someone to help her organize it. It'd have been too overwhelming. It reminded me of being a kid and doing projects with her. And, it was glorious seeing photos of people I haven't seen in years, and even of my sister and her beautiful family. I savored those pictures the most of all.

Oh my god. Really. There's nothing cuter than this. No child on the planet can compete with mine in this category. Look at him.

Oh my god. Really. There's nothing cuter than this. No child on the planet can compete with mine in this category. Look at him.

But then, we got home, and we started unpacking what came with the dollhouse. There was a large plastic tub of miscellaneous things that got saved from my bedroom. My dad has just moved to a new house, so he’s obviously just packed his previous house, which means he knows exactly what was in every nook and cranny, and what he threw in that tub for me.

One more of my Grandma and me. You'll notice I'm wearing a full-up winter coat. Like a California asshole, in Michigan, when it's 50-degrees. It was fucking cold to my California blood! Does my having wet-hair excuse me? I think it does.

One more of my Grandma and me. You'll notice I'm wearing a full-up winter coat. Like a California asshole, in Michigan, when it's 50-degrees. It was fucking cold to my California blood! Does my having wet-hair excuse me? I think it does.

He threw in every gift I ever gave him that was meaningful. He returned my first set of dog tags with my maiden name on them, which I gave him because I wanted him to proud that there was a Parke in the AF, his Parke. And, he returned my first AF name tag, also with my maiden name, and his AF parent pin, which we get to give them upon graduation from basic training. He also returned a model of the F-22 that I sent him the first Christmas I was away from home, which I sent because my squadron worked on the F-22. Essentially, he returned everything that said, “Daddy, please be proud of me.” He also returned a mug that I sent him after Collin was born, with a photo on it, of the three of us at my hospital bed, because he’d driven down to see us in the hospital.

Whelp. That's that, I suppose. Except the day that I have a nice mug-smashing party for myself. Except Collin snatched up all the other stuff and said he wanted it because he's very proud of his mommy and wants to have everything associated with me so he can save it, and Daddy's stuff together to share with his kids one day. Sniff. I'll never forget that the day Collin was born, he told me that he'd felt a special bond to Collin, one that he didn't feel to Sara's son. I thought it was a strange thing to say, and I never repeated it, except to Bryon, who also said it was odd, but clearly the bond was temporary, and he didn't mind losing a grandson too terribly. Or, he didn't mind not seeing him or talking to him all that often. He's got other grandchildren, and especially his wife's. And, what a weird thing to say, by the way, to your kid. Talk about pitting one kid against the other. Even as adults. It made me feel weird. By then, Sara and I were already barely speaking, or not speaking. We were enemies since birth, of course; but as adults, we were trying. Subtle pokes and war-mongering is one thing, but yikes. I wasn't sure if he was trying to get me to name him Collin Walter, which there was definite pressure for, or if it was just a thing. But, it definitely was a weird "thing," that I knew was meant as a compliment, but made me feel crummy inside, like I took something I wasn't supposed to take, without even asking for it, from my sister. Oh well, not to fear, she got it back, not long after he was born.

Whelp. That's that, I suppose. Except the day that I have a nice mug-smashing party for myself. Except Collin snatched up all the other stuff and said he wanted it because he's very proud of his mommy and wants to have everything associated with me so he can save it, and Daddy's stuff together to share with his kids one day. Sniff.

I'll never forget that the day Collin was born, he told me that he'd felt a special bond to Collin, one that he didn't feel to Sara's son. I thought it was a strange thing to say, and I never repeated it, except to Bryon, who also said it was odd, but clearly the bond was temporary, and he didn't mind losing a grandson too terribly. Or, he didn't mind not seeing him or talking to him all that often. He's got other grandchildren, and especially his wife's.

And, what a weird thing to say, by the way, to your kid. Talk about pitting one kid against the other. Even as adults. It made me feel weird. By then, Sara and I were already barely speaking, or not speaking. We were enemies since birth, of course; but as adults, we were trying. Subtle pokes and war-mongering is one thing, but yikes. I wasn't sure if he was trying to get me to name him Collin Walter, which there was definite pressure for, or if it was just a thing. But, it definitely was a weird "thing," that I knew was meant as a compliment, but made me feel crummy inside, like I took something I wasn't supposed to take, without even asking for it, from my sister. Oh well, not to fear, she got it back, not long after he was born.

There’s really no way to take this package of mementos, other than, “I’m erasing you from my life.” My father is an arrogant man; being right, is always going to be the most important thing to him. He obviously values it more than he values me. He doesn’t want to understand any of this, from my side, or me at all, frankly; he wants to explain why I’m wrong. If we ever talked again, he’d tell me all the reasons I’m wrong. He’d tell me I hurt him and why I’m wrong for doing it. There’s nothing my son could say that I wouldn’t reach out and say, “help me understand.” And, as a mother to an autistic child who screams in my face, regularly, “I hate you,” I can promise that’s true. He breaks my heart regularly. Daily, in fact. So, the time he told me that he can only hope my son breaks my heart like this one day, no worries, it happens all the time. The difference is, I open my arms and beg him to explain, every single time. I never, for one moment, put my pride above his heart. If he's screaming that loud about something, he's in pain and needs to be heard. But, my dad is right. So, that’s all that matters.

More road trip chic, but this is cool. Bryon stopped at Wal Marts along the way and bought me every new Wonder Woman Barbie, times TWO. Why? So, I could open one of each and play with them. Play! I've been carrying around the horse for days, like a little girl. I'm not kidding. I can't help it, the horse is so pretty! Collin and I have, legit, been playing Barbie and toy soldiers. It's been fun!

More road trip chic, but this is cool. Bryon stopped at Wal Marts along the way and bought me every new Wonder Woman Barbie, times TWO. Why? So, I could open one of each and play with them. Play! I've been carrying around the horse for days, like a little girl. I'm not kidding. I can't help it, the horse is so pretty! Collin and I have, legit, been playing Barbie and toy soldiers. It's been fun!

I’m sure he hurts. I’m sure he misses me. I’m sure that this causes him great pain. Just not enough pain to try to understand what is actually wrong. What the core of the problem is. The only thing I said, to set him off in the first place, was that he has acted differently, since he got re-married, that I miss the daddy I used to have, the one who was sweet and attentive. But, that got lost in his defensiveness and anger. Instead, now, too much is lost. It’s sad, but it’s broken. He intended me to see all those gifts and to hurt, to cry into my husband’s arms about practically being an orphan. He intended for me to be comforted by my child about how I’m not alone in this world. He intended to cause me pain. My own father caused me pain, on purpose. He hurt me, intentionally. Not only will he never protect me again, he will hurt me. I can never trust him again. Ever.

More of my awesome people. The best part of Grandma, to me now, is that she loves me anyway, no matter what. When all of the shit hit the fan a while back, with my first family-related blog post, I called her right away. I told her what happened. I told her what I wrote. I told her everything. E-v-ery-thing. I cried. I was afraid she wouldn't love me anymore. My grandma. My world outside of my house. She said not to be silly, that I was her Rachel and she'd always love me, that I'm her granddaughter. Now, when it comes up, she says it's just a letter (she doesn't really understand "blog") and she understands why I had to write it for me, and it might not be what she would have done, but everyone is different and while it caused some pain, she still loves me. She says she doesn't want to read it, and she doesn't care. She just loves me. There's no way to explain how much a person like me needs a person like that.

More of my awesome people. The best part of Grandma, to me now, is that she loves me anyway, no matter what. When all of the shit hit the fan a while back, with my first family-related blog post, I called her right away. I told her what happened. I told her what I wrote. I told her everything. E-v-ery-thing. I cried. I was afraid she wouldn't love me anymore. My grandma. My world outside of my house. She said not to be silly, that I was her Rachel and she'd always love me, that I'm her granddaughter. Now, when it comes up, she says it's just a letter (she doesn't really understand "blog") and she understands why I had to write it for me, and it might not be what she would have done, but everyone is different and while it caused some pain, she still loves me. She says she doesn't want to read it, and she doesn't care. She just loves me. There's no way to explain how much a person like me needs a person like that.

As much as my sister, or my dad, or anyone else who thinks of me wants to, they cannot think of me as all bad. They have to remember that I feel pain. I feel the burden of loss. I don’t want to be alone. I don’t want what’s happened to me. I didn’t want to be abused by my mother, so viciously that I can’t stomach the sound of her voice. I didn’t want to be abused by my uncle, and then to be disbelieved about it. I don’t want to be misunderstood by my sister; I wish we were best friends. I long for the kind of relationship where we talk every day about our children, or about how our husbands do such dorky things. But we don’t have that. We can’t. I didn’t want to be misunderstood about my dad. I don’t want to feel hurt, just like anyone else. I feel pain like anyone else. Instead, they see a different me, a me I don’t understand or can’t picture.

Can you tell we stopped for taffy? Honestly! Look at my mouth and the boy's mouth! It's goooooood!

Can you tell we stopped for taffy? Honestly! Look at my mouth and the boy's mouth! It's goooooood!

I’m a good person, just one that they don’t know. I volunteer. I give to my community. I literally walk out of my house with a promise in my heart of doing one good thing for a stranger, every day; if I can’t find something before I get home, I keep at it until I can. I buy strangers’ groceries. I hand out money to homeless people. I buy pots of plants and leave them on stoops of neighbors’ houses, I randomly drag neighbors’ garbage cans inside, or make sure kids’ bikes get brought up to the stoop so they don’t get stolen. This is the first time I’ve ever told anyone those things, because my goal is to never get credit, because otherwise it’s not doing good for them, it’s doing good for you; but, I’ve been doing it for years. I’m smart, funny and very silly. A few weeks ago, I wore my cat pajamas all day, and marched right into the library in them, tail, hood and all.

This is from a few months ago (see, a different rug) but you get the gist. They are cute, right?

This is from a few months ago (see, a different rug) but you get the gist. They are cute, right?

I work tirelessly to help my son, sometimes spending up to six hours a day on the phone for him, demanding care and services. I’m a good mother, a good wife, and a good person. I’m very open to criticism, and I make a good, loyal friend when people are loyal to me. But, I refuse to tolerate nonsense from anyone, even if they are related to me. I am a genuinely kind person that many of you have failed to get to know.

My husband, my love and my life. He promises he loves me, and I work on believing myself worth of that. I work on believing him and believing in me. This is the real, "nice boy," and I'm not mean to him :)

My husband, my love and my life. He promises he loves me, and I work on believing myself worth of that. I work on believing him and believing in me. This is the real, "nice boy," and I'm not mean to him :)

Bad Hair Day

Yesterday was a tough day for me. I cried about my hair. I didn’t have a bad hair day, or anything like that. I just re-discovered that I’m bald. And, it’s not even like I’m that bald anymore. I have about two inches of growth, which is just enough to get tangled up in a hair tie, and yank itself back out when you try to wrap it a second time. It’s a glorious length. I’m really excited for all these girls who are under-shaving right now for “volume,” to realize what a stupid mistake they’ve made, in a few months, when they try to re-grow it.

Super cute pattern, which lots of these "looks" showcase, but ugh later. Granted, mine is a strip up the middle, and not a flat across, which is not as awesome.

Super cute pattern, which lots of these "looks" showcase, but ugh later. Granted, mine is a strip up the middle, and not a flat across, which is not as awesome.

 

Anyway, I’d put my hair in two braids, when I got out of the shower. This isn’t an unusual thing for me to do, but I guess I never looked at the back before. As I was putting my makeup on, getting ready to go pick up Collin, and then to a doctor’s appointment, I caught a glimpse of the back in the combination of mirrors that the wall mirror and medicine chests give me. It was then, that I realized what an atrocity the shaved portion regrowth looked like.

I spent the next fifteen minutes trying to finagle it with pretty pins, and with headbands. Then, I cried. No matter what I did, it looked terrible. I finally left it the way it was, but that was worse. It suddenly occurred to me that no matter what I did “in the front,” with my makeup, with my clothes, with my shoes, I had this disaster going on in the back that said, “Chiari,” or “brain surgery.”

It became this metaphor for my life: Chiari will always be chasing me. A headache ball is always waiting to drop. Chiari, and pain will always be in the wings, waiting to destroy whatever window dressing, whatever hopes I put on myself. It’ll always be behind me, chasing me. So, I cried some more.

Then, I stopped crying, finished my makeup, and got in the car. As I backed out of the garage, I looked in my rear view mirror and had to do a double-take, I was orange. Orange. That’s right. Orange. Not just a little orange either. I was gross. Apparently, the lighting in my bathroom, with the blown bulb encouraged me to go a little heavy-handed with the peach in my bronzer palette. But, thanks to my setting spray, I couldn’t wipe or blend any of it out. So, now I had bad hair, and I was orange. Talk about feeling self-conscious.

When I picked up Collin, thinking that maybe I was making too much out of it, I asked him:

Mommy: Do you think I look orange?
Collin: No, not really. But you look a little like Donald Trump.
Mommy: Thanks, I feel all better now.

So, I did the least I could do: I pulled my braids out, in the car, and smashed my hair around into knots and blushed profusely until my face was merely a red, splotchy mess. I looked especially pretty, if I do say so myself.

Collin and I had a great-ish afternoon, except his public meltdown at a store, in which he threatened to run out into traffic if I didn’t buy him something, anything, in a vintage store. He didn't run out into traffic, but he did run outside. This was after he ran through the place, touching everything he could, and demanding that I purchase everything there, including beaded purses and hats with veils. No, this isn’t bad parenting, this is a child with a one-track mind that cannot be stopped.

Then, the meltdown in the evening resulted in him dipping a glass in the toilet, and dumping it on me, repeatedly, and charging at me with a closed fist. I was really excited about that one, especially since it was after he tried to pull a towel out from underneath me (since, I had to dry the toilet-water floor), in hopes I’d fall. Not to worry, he'd forgiven me for the cause of the meltdown (me throwing away his special piece of soap), only moments later, when in his rage, he blew his nose too hard, and it caused a bloody nose, which led to a panic attack. He, literally, cannot stand the sight of a bloody nose, and goes into actual panic when it happens, so he needs his mommy to hold him. He'll punch me one second, but then crawl into my lap in terror the next. Nothing to see here folks, totally normal, right?

Oh, and it shouldn't take any kind of emotional toll on me, or on Bryon. We should be able to just flip right along with him. We should be able to continue to speak at whispers when he's screaming, which we do. We should never touch him when he's raging, which we don't, except to protect ourselves or him. We should never tell him that he's bad, just his actions. It's exhausting. And, when he destroys our house, our things, and hurts us, then needs us, we are supposed to hold him like he's still our precious, special baby, even though less than five minutes prior, he tried to punch us. The thing is, he is our baby; he can't help what's happening, but it's so hard, so very hard to remember that.

Overall, it was a pretty terrible day. I felt hideous and my son tried to assault me, yet again. Knock him into next week, right? That ought to teach him, I’m sure. Instead, we’re working again, and more, with some added doctors on amending his initial diagnosis. There’s a high probability that there are other mental health issues that are not being properly diagnosed or treated, and that we need to explore. We are working pretty hard to get him the therapies that he desperately needs.

So, today I’m recovering by doing nothing. I’ve earned it. I miss the dog and I miss the feeling of forgetting about my bald spot. I also miss not being orange. So, I’m enjoying a clean face and a non-baldy head.

We Bought Furniture from a Drug Addict...Maybe?

Daphne’s gone. For people who don’t know us well, I’ve been telling them that she died. I know that’s horrible, but it’s easier than explaining the whole thing and being afraid that they’ll think we just gave up on her, which is the furthest thing from the truth. And to us, it’s a little like she did; she’s gone. But, we did all the right things: trainers, lessons, treats, stress-control, all of it. Nothing mattered, this neighborhood was too stressful for her, and she needed better. So, she got it. When we really started listening, from a dog’s perspective, it dawned on us, just how freaking loud it is here.

I always complain about the noise around here; I even wear noise-buffering headphones around the house a lot; but for a dog, it must be a thousand times worse. Constantly barking dogs; kids nonstop; lawn maintenance, seemingly every day. Of course, I could just be an eighty-year old woman, the kind who shakes her cane at those damn kids on her lawn, trapped in a young (?) woman’s body; or, it could actually be a damn loud neighborhood, in general. I’m not saying it’s a New York city street, but a quiet, tree-lined village, it is not. We have kids out till well passed dark, on lots of nights, and there is always, always, always, at least one dog having a nervous breakdown about something, within earshot.

Plus, our housing management company is so fucking cheap that they refuse to have the trees examined, despite the fact that four, count them four goddamn trees have fallen down in the past six months, on my block, alone. Thankfully, none of them have fallen into a house, or onto a person, but they figure, it’s more expensive to examine and trim them all pre-accident, than to just trim them post-fall, as it happens. I got this piece of information from the arborist that I demanded come to my house, because we have a sick tree that would fall into our kitchen. Anyway, this means that the chipper is out, in all its loud glory, a lot.

 

The thing that’s making her being gone a lot easier, at least on Bryon, is that he got to see how gleefully happy she was when she got there. He said she ran to the new family, the minute she got out of the car. Then, she discovered that she was allowed to push the door open, to her own yard, on her own. So, she kept doing it. And, doing it. And doing it some more, just running in and out, in and out, in and out, like a proud toddler playing, “look what I can do!” So, she’s pretty excited. She gets her own yard, and the freedom to use it as she pleases, in a quiet neighborhood. Perfect for her. Sad for us.

When I’m sad, I like to play “buy this, it makes the ouchie go away.” You may remember this game from such experiences as flares and depression. It works, but only in the short term. Shh, don’t tell Rachel; she tends to end up with lots of good stuff this way. But, this time, I roped Bryon into my game. How, I managed that, is beyond me, but we made a lovely day of it, and I can’t believe how much fun we had together. I was a lovely day-date. By the end of the day, we were exhausted, but blissfully happy, giggling, laughing and having quite a nice time together. It’s lovely when hiding from total sadness can turn into a romantic and glorious time, isn’t it? We had so many smooches that Collin screeched “ewww! Stop!” and “his tongue touched your mouth!” at us before running away. Sorry dude.

See, I’ve always hated our laundry room. Like, hated with a capital “H.” So, I guess I’ve always “Hated” our laundry room. It’s humungous. It’s at least twice the size of our master bathroom because our house was designed by morons with no sense of personal space. Most wives like to brush their teeth while listening to their husbands pee, or worse. And, because it’s where Daphne’s cage and food bowls were kept, it was a disgusting utility space, with zero style, and just a room I’d prefer to keep the door closed on. Yes, I know it’s a utility room, a place you keep your mops, but I always felt it was more blah than it had to be. Since her cage is the size of our master bathroom though, there wasn’t much we could do about it; and, because she drools so profusely, and her bowls are so large, there was no point in trying anything else. She was, essentially the utility room.

Alas, once all that stuff was out of there, I broached my ideas with the husband and told him, that, when he was ready, what I’d hoped to do in there. Surprisingly, because I said, “Criagslist,” or “the used furniture store,” he was game to look right away. Hooray for cheapskate husbands, and for knowing how to manipulate them into your ideas. Kidding. Love you, honey! But really, I didn’t want to spend a lot either. It is, after all, the laundry room. So, I showed him “expensive” pieces on Wayfair, to give him the general idea of what I wanted to do, and then I was off on the Craigslist hunt.

My ideas were to cover the damn hot water heater and heater with a curtain (easy – but waiting for one from Overstock, now). I want to get a new area rug for the room (done – waiting for my deal of the day, again from Overstock – hooray for President’s Day sales!). I also wanted to take down all the pre-installed shelves in the unit on the wall, and put up a cabinet of some type, preferably one with glass doors, to put our paper products in: toilet paper, paper towels, tissues, you know, “supplies.” I wanted to make ‘em look fancy. I’m thinking of putting my tampons in there too, just to shake it up a bit. Feminine hygiene should make others as uncomfortable as it makes me, maybe. The cabinet was the Craigslist shopping. I’d hoped to spend no more than $150 (more on that in a minute). And, I wanted to get some kind of bins for the un-foldables, in order to hide them. Martha Stewart claims you can fold sheets. She lies. Even if you can, I don’t wanna. No more “hacks” about fitting them into the pillow case, or any of that bullshit. I want to hide them.

I found a cabinet on Craigslist for $60. It was cool, unique and different, and it’d fit if we removed only two of our shelves, leaving us two shelves for storage. Hmm, intriguing. Sounds perfect. So, we go to this woman’s house, and before we pull up, I say, “I have to pee, do you think she’ll let me use her bathroom?” Apparently not, as she’s putting the piece of furniture onto the porch, so we don’t come into the house. Guess we’re not welcome into their home, which was fine, because you could smell her house from the street. From the literal street, like when you opened the car door. How lovely to be her neighbors. 

Her boyfriend, brother, cousin, no clue; her man-person (?) was sweating profusely, despite the fact that it was not at all hot. An older woman was inside the door, which was obscured by a rusted metal ghetto-gate. But, the older woman was pretty keen on making the sale, despite the fact that it was obvious we were going to buy it; she kept making compliments about how wonderful the “piece” was. The poster was a very kind, but jittery woman, who was sort of hopping around the porch in a dance I like to call, “withdrawal.” Takes one to know one.

As soon as I handed her my sixty dollars, she handed it to another woman, who I shit you not, ran down the street with it, after a few whispered words. I’m pretty sure that I just bought either meth, crack or heroin. Not sure which, but I know I bought something unsavory. I’m also pretty sure that I bought the top of her grandma’s, or other family member’s hutch, because this was not a cabinet, but the top part of a larger piece of furniture. The poster told me, when I pointed it out, “yeah, I didn’t know furniture came that way until recently.” I felt like saying, “so how long have you been selling off your stuff, bit by bit? Can I buy your house?”

We had to put legs on it to make it work as a single piece of furniture; thankfully, my husband is so handy. It looks pretty good. It was also covered in spider eggs, and spiders, which had to be cleaned off before it could come inside. It’s also, literally, filled with air fresheners right now, as to wipe clean the smell of nicotine. My toilet paper will smell like apple cinnamon, but not regret.

It’s also got a lot of water damage to the back, so we’ll have to replace the back panels pretty soon. But, we’ve got plans for it.

 

And, one of the “fancy” pieces at the top is a little loose and needs some glue, but other than that, it’s not in terrible shape. It might need something to hold the glass in a little tighter. It’s probably something we’d not ever think of, except that we move all the time, and movers wreck stuff that’s not a million percent perfect. Actually, they wreck things that are a million percent perfect. Last time, they broke our headboard. Our mover, who said he’d been doing this for thirty years, said it’s the first time he’d ever seen a mover break a headboard. Glad to be a first. Some are the first on the moon. Some are us.

 

It’s exactly what I was looking for, frankly. I didn’t want a cabinet that looked like something everyone else can find at Target, or a more expensive version of what everyone else can find at Target. There’s enough furniture already out there, that’s decent enough, why buy something new? Buy something with some life left in it. And, you can’t beat the price of $60 worth of meth, right? About an hour after we picked it up, I got a follow-up text from Madame Meth, which said, “I hope you really enjoy the cabinet.” How sweet, right? She was so nice to follow up. She didn’t have to do that, and despite being kind of a trashy person, she’s not trash. Goes to show you that nice is everywhere.

My sweet, exhausted by the time he did it, husband, even put contact paper around the recycle bin, to hide the filth inside it. Seriously, can I be any luckier with this one? The paper towels are because the paint on the legs is still a smidgen wet. We bought table/chair legs and put them on the cabinet. Quick, $3/leg thinking, right? Couple of new knobs too and we were set!

My sweet, exhausted by the time he did it, husband, even put contact paper around the recycle bin, to hide the filth inside it. Seriously, can I be any luckier with this one? The paper towels are because the paint on the legs is still a smidgen wet. We bought table/chair legs and put them on the cabinet. Quick, $3/leg thinking, right? Couple of new knobs too and we were set!

But, the bins on the top were expensive-ish. They were $30/each at Cost Plus. You’d think everything in there should be cheap. I don’t go in there much, so I don’t really know, but it’s all warehouse-y in there, and they have cost in the name. Leave it to me to grab the expsensive-ist thing in there. Maybe Cost Plus means that it’s cost-y, plus some more! I should’ve known! I used to browse through one, occasionally, when I was early to class, back in Virginia, and I loved touching everything, but I didn’t really look. There was a peacock painted end table at this one, this time. I wanted it. Bryon said no because it was something like $500. I agreed. But, I still wanted it, nonetheless. Cost Plus equals needlessly expensive, perhaps? I say this because I also found a hamper that I wanted, and it was $100. I can’t bring myself to spend that on a receptacle for filthy clothes, can you?

I’m not showing you the curtain’ed off water heater/heater area yet, because it’s got an icky curtain right now, but Bryon rigged some old curtain rods up there and it looks, meh, but livable, better than looking at a heater! I’m so excited about this new “room.” We had so much fun planning it all out. And, I’m always impressed by my husband’s innate engineering ability. Meanwhile, I just stand there and watch, waiting for the time that I can step in to do what I can do to help, which is wipe down the cabinet with wood oil. Yay! I helped! I wiped!

We had so much fun, in fact, that we didn’t notice someone, that I’m not going to name (Loki) sneak into the new room, as we were working, and pee on a throw rug. Damn cat. Angry peeing! Perhaps, his hatred of the dog was all an act, and he’s devastated at losing her from the family. Or, he is just pissed that I moved his favorite throw rug from the hallway to the laundry room, temporarily. He used to like hiding underneath the rug, so that unsuspecting hall-walkers would think it was just a small bump, and they’d trip on a moving target, nearly dying. I’m pretty sure Loki is a minion of Satan; because, alternatively, he’d hide and then jump out at unsuspecting hall-walkers, giving them a heart-attack.

Can you tell that this family watches a lot of Friends? Collin speaks almost exclusively in Friends quotes now. I fear I have damaged him, socially, for life. Oh well....

Good life advice from a awesome literary woman...not so awesomely translated to film. Good movie, but not greatly represented from the book. Read it. Trust me.

Either way, now I have to throw out the rug. Stupid cat.

Popping Pills

This is my pill case.

There are many like it, but this one is mine.

Just kidding. But really, this are the pills that I have to take, every day to survive. If I don’t take these pills, I will likely have a seizure, or feel very, very badly, and wish I were dead. As you can see, there are little boxes for morning, noon, evening, and bedtime. Phew, because I can’t remember if I took my pills, sometimes (all the time) from one part of the day, till the next. This helps take the question out of it. Or, you know, the death, from taking them two or three extra times.

Bryon fills it up for me, every Sunday night, so, he could kill me if he wanted to, because I don’t even remember what the full dosages are, anymore, for most of them. Well, that’s not true, I do, but I’d get confused trying to fill it up. It’s too much math for me these days! Once all those little doors are all opened up, I’d feel like a third string mathlete who got called to “the show” because everyone else’s pocket-protectors were destroyed in a freak calculator fire.

Anyway, I thought I’d take a minute to explain what it’s like to be on so many drugs, foreveh. All the pills in this case are non-narcotic, and are non-addictive. There is nothing in here that causes anything that, say, means I cannot drive, or am impaired in any way. But, it still means that I have to take a bunch of stuff. They all help, a lot, but they don’t make me better. I’m an open book about my condition, and what I use, and do, to treat it, so why not give you a glimpse into my meds, right?

Topamax

A controversial drug in the Chiari world. Lots of neurologists start headache patients with Topamax, or its newer patented drug, Trokendi, which is just an XR formulation. The generic is called Topiramate (or Topiramate XR, in the case of Trokendi). It’s an anti-seizure medication that has shown to be very effective at reducing migraines, as migraines originate, in many cases, in the same part of the brain, as seizure activity. Lots of people in the Chiari community think that it’s akin to poison because it has a lot of negative side effects, especially during the adjustment period, such as confusion and making your food taste bad. The confusion goes away, but making soda taste bad, not so much. I think we could all live with less soda though.

I know a woman who claims that she failed a fourth grade math test; drove her car off a bridge; and that her red blood cell count was so elevated, her doctor thought she might have cancer, but didn’t. Since a grown woman doesn’t have call to take a fourth grade math test, and (I think??) it’s a white blood cell count that indicates cause for alarm for cancer (which she didn’t have, anyway), and the bridge thing is the questionable icing on a cake made of lies, I feel like she might be exaggerating her response to the med, but who am I to say? Either way, lots of Chiari people call it Topashit, Dopashit, or Dopamax. Really, I just think it boils down to the fact that they don’t want to believe that any of their headaches could be related to anything else, and don’t want to trust a neurologist to treat them, if it’s not to refer them to a surgeon. Chiari patients are inherently mistrustful, and with good reason.

Regardless, I’ve taken Topamax, since I was a teenager, in varying amounts, from 50 mg a day, up to 800 mg a day (an insane amount, prescribed by a terrible doctor), I’m on 300 mg a day now, and that seems to be a good, stable amount. I have my liver and kidney levels checked regularly, and I’ve had no damage, which is another side effect (stones especially). I’ve not failed any math tests, driven off any bridges, or had any fake-cancer scares, yet. But, Collin’s in fourth grade now, so if I have to take one of his tests, I’ll let you know…but wait, he’s in fifth grade math. Shit, I won’t ever know!

Gabapentin (Neurotinin)

Gabapentin is for nerve damage. I didn’t realize how badly my scalp nerves were damaged, until I was prescribed Gabapentin. I just thought that it was normal to not be able to brush my hair anymore, or to feel like I was constantly being stung by thousands of invisible, tiny bees, at all times. That’s, apparently, not normal. Who knew? Gabapentin took several weeks to get used to as well, because it works on the brain, and it took several weeks to work up to an appropriate, stable dose, but I love it.

It makes you ungodly tired, at first. Like, I could barely move my face off of the pillow, for the first few weeks, but I’m perfectly normal now, and I don’t know how I survived without it. Most people claim that it makes you gain weight, usually around 30-60 lbs., but I’ve not had that issue at all. I’ve found that being able to move my head without my hair follicles sending stabbing icepick pain through the rest of my scalp makes it easier to exercise, not more difficult. I was hesitant when I read a lot of people claiming this wait gain, so I read through the literature, and saw that the weight gain incidence was something like 2 out of 336 patients (vs 0 given placebo). So, when I see dozens and dozens, no hundreds of people on groups, posting that they’ve gained 50 lbs., or more, thanks to Gabapentin I think there might be something else going on. All I know, is no more tinglies!

Cymbalta

Did you know that depression is pretty common in the chronically ill and those with severe, chronic pain? If you read this blog, I bet you did. I take Cymbalta for my ongoing depression. I tried several drugs before I got it right with Cymbalta. It’s made from fluffy kitties, clouds and unicorns. It’s amazing. It gives me the energy that I lack when I’m in a low, and it keeps me level when I don’t want to be. It doesn’t cure depression, but it makes it more bearable, and makes it easier to help me to help myself. But, it gives me dry mouth. Why do all anti-depressants give you dry mouth? Seriously? It’s the worst. And not just dry, but like you’ve been licking your living room rug all day, and then sucking on a back of pennies for refreshment.

I have zero shame for taking Cymbalta, and if anyone ever wants to talk to me about other drugs I’ve tried and why I didn’t like them, I am happy to discuss. I know someone who claimed to have had a stroke after one pill of Cymbalta. Thankfully, she survived; and, considering her harrowing battle to survive driving off a bridge, failing a fourth grade math test, and a blood test that was nothing, she’s lucky to be alive. In other words, I think she did not have a stroke. I’m pretty sure she’s just anti-all-meds, which is always abundantly clear, as she recommends wrapping your feet in hootchie-mama oil and breathing in the relaxing scent of hippie-sweat, available from your local oil dealer. Or her, of course.

Stool Softeners

Is there much more to say about stool softeners? I take opiates. Poop is hard when you take opiates. Stool softeners make poop softer. Must you know everything?

Synthroid

I have a hypoactive thyroid. So, I take 50 mcg of Synthroid a day. Once, when the prescription ran out, I was too lazy to get it refilled on time, so I thought to myself, “I wonder what would happen, if I just stopped taking it. It’s such a small pill, what can it really do?” Know what happens? You develop a giant goiter! That’s what! They thought I had thyroid cancer, which was a terrifying 36-hours. Thankfully, when I got back on my meds, it shrunk back down to normal, within a few weeks. So, note to others: don’t stop taking your thyroid meds. I only ever really called to refill it, not because of the goiter, which I barely noticed, but because my hair kept falling out in handfuls, and I was really, really tired. The doctor though, spotted the goiter from across the room. Apparently, my family and I are not that observant of large lumps on my neck.

Clonidine

Clonidine is, technically, a heart medication; but, it lowers your blood pressure quite nicely, and knocks you the fuck out. It’s a great drug for combatting withdrawal. You can take quite a bit of it, especially when you are in the throes of it. Since I have to do withdrawal, yet again (ugh, I know), it’s my ever-faithful friend. I take it at night, usually, to make it through the night, because it’s the longest time I go, usually, between doses of Oxy. Me and Clonidine are well acquainted. He lets me call him Clonnie. And he calls me, His Bitch.

Benadryl

I am allergic to everything. For real. I eat a cupcake from the bakery at Von’s and I’m fine. I eat two, and I get a rash. Enter: Benadryl. I get rashes from just about everything these days: candy, cookies, cake, essentially everything delicious. Aside from the allergies, Benadryl can be your best friend when you need extra sleep from withdrawal, and it helps with some of the symptoms, like the post-nasal drip, sneezing, and the red, watery, running eyes.

Drugs That Aren’t in the Daily Box

Oxy

Obviously. I can’t get rid of that damn med. It’s like a bad re-run, always on. But, it’s back in the rotation from the hideous, month-long headache from the rhizotomy. Back in the withdrawal saddle again. But, Dr. W, my pain management doctor, who rocks the house, has a new idea for me, that is super-scary, but sounds amazing too. He wants to do a spinal cord stimulator. More on that later, but eek!

Muscle Relaxers

I am down to taking these, mostly, just at night. I take Robaxin, which is pretty strong, but they work really well. They make you sleepy, sleepy, sleepy. I have a strong dose, obviously, so I’m always careful when I take them, such as not before driving, even though I’ve been on them forever, and could probably handle it. There’s no room for probably with safety, right!

Various Migraine Abortives

I have several Triptan medications, which are the go-to for migraines. I also keep Zofran at home, which is a prescription anti-nausea medication. I am lucky enough to have dissolvable tablets, that you don’t have to swallow with water, so you don’t barf them back up, during a migraine, or Chiari episode. I also have Firocet for pressure headaches. I also take Advil when it’s really, really bad, because the anti-inflammatory helps a lot, but it irritates my precious, and apparently, delicate tummy.

Being sick in a forever way, means you are tied to some forever meds. It’s not a glorious existence, and it means people are forever looking at your pill case like “I’d never do that,” or “I bet if you just rubbed some coconut oil on it, you’d feel better,” you know, because obviously, coconut oil cures and fixes everything. But, until you get really, really sick, you don’t know shit. All you know is that you don’t really know what you’d do. You don’t know what it feels like to live in fear of the headache that will, finally kill you, in a stroke or an aneurism. You don’t know what it means to just hope for maintenance, not better, worse, or death. You don’t know what it means to just want to survive, at status quo. You don’t know what it means to just want to survive, and hope, that one day, that means thrive.

So, for every one person who says, “I’d never…” there should be at least five more that say, “that’s amazing….” But, there aren’t. There should be, but there aren’t. I know this because I keep my pill case in the living room, because that’s where I spend the most time. I’d forget to take my mid-afternoon pills, if I left it in the bedroom. So, it stays in the living room, where I write, read, and draw, and where I watch TV at night, with my husband. It’s tucked away in a corner, where no one really sees it. But, if it’s time for a med, a guest might take note of it. I see the judgement in their eyes, and sense the “ugh” in their faces when they see how many pills I have to take, the “I’d never do that,” in their exchanged glances. You probably would, my friends, you probably would. Don’t think for a moment that each pill hasn’t taken a small piece of my soul, of my dignity, of hope, because it has. But, I have had to learn to reclaim it, and be proud of living through it, and surviving.

 

Daphne Sue, We Love You

I love my animals. I love all animals. Hell, if a tarantula needed rescuing, I’d be there with a screeching voice, a terrarium box, and a book called, Learning to Love Your Spider: Lessons in Accepting the Disgusting. But, loving animals means that sometimes you have to love them enough to do what’s right for them, even if it’s not right for you, a lesson that I’ve learned the hard way, in recent months.

Daphne, basking in the joy that is a warm fireplace, in our house in Virginia. Unfortunately, she is outnumbered in her pleasure at that house. She's definitely the only one who preferred that house.

Daphne, basking in the joy that is a warm fireplace, in our house in Virginia. Unfortunately, she is outnumbered in her pleasure at that house. She's definitely the only one who preferred that house.

Everyone knows our family loves our dog. She was a replacement for Eddie, a dog that cannot, and could not, be matched, but she persisted in her efforts, and wormed her way into a place in our hearts, nonetheless. She’s, no doubt, doofus that has become, like all dogs do, a member of our family. She’s laid by my side when I’ve felt sick, annoyed the crap out of me, stolen whole sandwiches from the table, sniffed guests’ crotches, snuggled my boy when he cried, and let me stroke her velvety-soft ears for hours; in short, she’s a dog.

When we moved from Virginia, where we got her, to California, we noticed a subtle change in her, slow at first, but gradually getting worse and worse. Over the most recent 12-18 months, she’s become so miserable that it’s like watching a depressed version of Eeyore, who she’s always looked like anyway,

Stolen...obviously. I can't draw that!

Stolen...obviously. I can't draw that!

 

combined with piglet, for anxiety.

So cute...

So cute...

Yeah, yeah, this trivializes mental illness, per this article; but, it also makes definitions accessible to people who refuse to acknowledge that mental illness is a thing. It is. If you believe it isn’t, you’re ridiculous, and stupid. There’s no nice way to say that. In fact, over 95% of the world’s population is thought to suffer from some kind of mental health problem. 95 fucking percent. So, you don’t ever get to say that it’s not you. It is you. It’s everyone. Everyone. Being fucked up is normal. Which begs the question: isn’t it abnormal, then, to be “normal?” So, then why are we calling it a “problem?”

A puppy that's probably bigger than your full-grown dog, "helping" me make the bed.

A puppy that's probably bigger than your full-grown dog, "helping" me make the bed.

Anyway, from the minute we got to our new house, she seemed unhappy here. We chalked it up to needing an adjustment period. She was miserable in our new yard, which sucks compared to the yard she had in Virginia, where she spent her mornings, even when it was sweltering, basking in the grass. Here, because we live on a corner lot, with a lot of foot-traffic, both pedestrian and dog, she can’t do that without scaring children with her beastly bark. Oh, and the time that she snapped her “unbreakable” lead in half, to tear across the street, knocking a small child to the ground to attack his fluff of fur that he was walking, that wasn’t great either. I think it was a dog, but it’s hard to say, it looked more like the end of a cotton swab that you clean your ears with.

We also have large front widows, side windows and slantways windows. Not really, but it sounds like we live in the Willy Wonka House when I say it that way. But, when you have windows on all sides of a corner house, it’s freak-out central for an anxious dog. She runs from window to window, alerting us of all things that might be a danger to us, including pine cones that blew across the yard, to every passing vehicle, to children walking to school. It’s all important information. And, she’s not barking in a “Look! Look!” bark; she’s barking in a, “OMG! We’re all going to die!” bark. It’s so sad to hear. She’s so scared.

When we had to live in a hotel for ten days or so, when we first got here, she was pretty tolerant, but she certainly didn't like it. This was pretty much the size of our whole room. And yeah, that's a tv going in the background, with a tv in the foreground, too. I didn't like what my boys were watching, so I watched tv on the iPad, and used earbuds. Ah, technology, right?

When we had to live in a hotel for ten days or so, when we first got here, she was pretty tolerant, but she certainly didn't like it. This was pretty much the size of our whole room. And yeah, that's a tv going in the background, with a tv in the foreground, too. I didn't like what my boys were watching, so I watched tv on the iPad, and used earbuds. Ah, technology, right?

When we picked our corner house of death, at least according to Daphne, we didn’t realize we were dooming her to misery. She was so chill and calm in Virginia. She’d passed all her puppy classes, was well-trained, and I used to brag how she was so easy to handle on a leash that I could walk her just fine on my own. Now, her anxiety and dog aggression is so bad that she’s either miserably moping and sleeping all day, or alternatively, attacking not just small dogs, but all dogs that she sees. I can’t walk her alone anymore, because I cannot, absolutely cannot control her anymore. She’s dragged me to the ground, pulled me, caused rope burns on my hands from the leash being yanked through so quickly. It’s terrible for both of us, not to mention the children and dogs she’s gone after.

Last week was the final straw, really. She started our walk by putting her hackles up at children, jumping on their trampoline, in their yard. She walks with her hackles up, most of the time, when it’s just her and I, really. But, at children? It scares me. What if she starts going after kids who aren’t walking dogs? Moments later, she attacked a little girl and her Labrador. I couldn’t stop it. I tried all the tactics we’d been working on that we got from a trainer. None of them worked. They work when Bryon does them, but not when I do them. Considering that I’m the one who trained the dog in the first place, took her to her puppy classes, and did all the work, I don’t understand why this is, but go figure. Ungrateful little girl. Honestly. Kids, I tell you.

Buddies, in the no-pack room, while the movers packed our house in Virginia, with the bed stripped down to nothing, freaking the hell out, but providing solace to one another.

Buddies, in the no-pack room, while the movers packed our house in Virginia, with the bed stripped down to nothing, freaking the hell out, but providing solace to one another.

I’m starting to get genuinely worried that she’s going to hurt a child, another dog, or something worse. I’m even starting to get worried that she’s going to hurt one of our animals, animals she’s formerly been fine with. The trainer we spoke with told me that because she hasn’t hurt anyone, especially another dog, that she’s not genuinely dog-aggressive. She explained that Daphne is capable of killing another animal in one bite, or one swipe of her paw, and that because she’s jumping on these dogs and isn’t biting down hard, or swiping in a way that kills them, she’s merely showing them that she’s making a first move, showing them that she’s the boss, essentially that she’s afraid. This is a good thing because it means she’s trainable, especially in a better environment.

Alas, the better environment. Bryon and I have been talking about giving her a better home, one where she isn’t so stressed, for a while; but, we’ve not been able to pull the trigger, because we love her. We’ve been dancing around the idea for months. And, it finally dawned on us, that the reason we can’t pull the trigger is because we are being selfish; we don’t want to lose her. We’re not talking about re-homing her because we can’t handle her, or because we don’t want her, or any of those terrible reasons that people re-home a dog. We’re talking about re-homing her because we want her to be happy. We are talking about re-homing her because we want her to have a better yard, a calmer environment, and all the things we can’t provide for her. And, we don’t want her to have to go through another move, which she didn’t handle well. We’re not thinking of us at all, we’re thinking of her. The only reason we haven’t helped her yet, is because we’re thinking of us. Listening to her grind her teeth all day, and often at night, is terrible. She’s so miserable. It’s time.

Someone was chilly.

Someone was chilly.

So, we started looking. A rescue organization I talked to told me that how she looks indicates that she’s impeccably cared for and that she’d have a line out the door for her; she’d be adopted in less than a day. Her coat is shiny, she’s a good weight, she doesn’t have any grey in her muzzle for a dog her age, which means she’s fed and cared for well. But, Bryon knows someone who’s been wanting a Great Dane for years, so they are our first choice. They have a quiet home and someone who works from home. They‘ve got a fenced-in yard, and a quiet neighborhood. This is a perfect match for her, and they’d let us visit her. In fact, they encourage it. It's like an "open adoption!" Because we know them, we’d get to know her for the rest of her life, which is ideal for us. This decision is terrible, and we hate it, at least we can do it in a way that is less terrible, right?

I love this face that she makes. If you stop petting her before she's done being petted, she bashes her head against your hand, and makes this pitiful face, with a look in her eyes that says, "please sir, can I have some more?" It's disarmingly charming.

I love this face that she makes. If you stop petting her before she's done being petted, she bashes her head against your hand, and makes this pitiful face, with a look in her eyes that says, "please sir, can I have some more?" It's disarmingly charming.

So, we had a meet and greet, yesterday with the prospective adoptees, and it went great. They love her. Next weekend, they are coming to pick her up and take her for a two-week trial run. If all goes well, they’ll likely adopt her. Daphne loved them too. She, obviously, has no idea what’s happening, but I already feel good about these people. She was so happy when they were here. She lit up. She’s so depressed during the day. She has, essentially, only ever bonded with Bryon, and no amount of attention that I give her, when we’re home alone, is enough for her, so she is like a sofa-cushion, when we’re alone. I’m lucky to get a half-hearted tail wag from her, from a thirty-minute scratching session, and a pound of sausage. But, the minute Bryon walks in the door, it’s like someone flips the “Daphne-On” switch, and she perks up. She was, fully, “Daphne-On” for these people. I’m really hoping that in the absence of Bryon, she can re-set and be happy.

And you know what? We have cared for her well. While they were here, we were explaining her health to them, and her care, her previous vet visits, her diet, and answering all of their questions, and it really dawned on me, she’s not been some neglected, uncared for animal, that we’re dumping off on someone else. She’s got a binder full of her vet records, her AKC paperwork, her insurance, a bucketful of toys and grooming tools, a list of procedures we’ve had done. She’s been loved and treated well. I was feeling so terrible about considering this, but while I was talking, it finally clicked: I’m a good dog owner. And a good dog owner does this for a dog that’s miserable.

A pretty accurate depiction of her days: glaring out the window, pacing up and down the couch, whining and whimpering.

A pretty accurate depiction of her days: glaring out the window, pacing up and down the couch, whining and whimpering.

The misery of losing a pet, when they are still alive, is terrible. It’s not something I’d ever expected having to do. The tears I’ve shed for this are many and plenty. We love her. But, we love her enough to let her go. I know, already, I’ll be judged for this decision. I’ve already seen some judgment just from the few people we’ve told. But, it’s okay. Until you’ve watched something you love be miserable, and had to make the right choice, I won’t worry about what you think. I know many people who’ve given up an animal simply because they just didn’t want it, because they thought it was too hard to take care of, or they wanted a different one. I’ve known people who gave their dogs away because they got pregnant, or were just thinking of getting pregnant. We’re doing this for the opposite reasons; we’re doing it because we love her. We’re not providing a good enough home for her, and she deserves so much more. She’s a beautiful, wonderful dog, and she deserves a comfortable, quiet home, that we cannot provide.

At the very least, know this decision was not made in haste, and know it wasn't made by people who simply stopped loving their dog. Nor, was it made because we don't want her. It was made because we do love her, and we do want her. It sucks.

LuLaRoe - LuLa NO!

WARNING: I WAS BUSY THIS WEEK…THIS RANT HAS NOT BEEN PROOFREAD -- TAKE IT AS IS I’M LAZY!

If you are a woman in your thirties, or a mom of littles, you’ve heard of LuLaRoe. Or, you’ve heard of leggings, which means you’ve heard of LuLa Roe. It’s the leggings company that’s taken the mommy-world by storm. It’s the brilliant MLM brainchild of marketing genius, DeAnne Stidham, who saw a place to strike where the iron was hot, and knew how to manipulate the minds of female shoppers. I have to give credit where credit is due to her, she knows mom shoppers, and women shoppers. We fall for “exclusive,” and we all want to be “in” on the same thing our friends are, so she perfectly honed and targeted her LLR marketing right for our market, skipping right over retailers and rakes in the profits by using a pyramid. Shudder. But, LLR is a disaster, just like any other MLM “business,” and it’s going to crash and burn, just like any other MLM, not right now, but eventually. And, worse, it’s manipulative sales tactics are a disaster and the worst of mean-girl tactics.

There’s no end to the amount of YouTube videos of women warning you off of becoming a LLR rep, or complaining about quality, but there’s also no end to the amount of videos saying, but wait, it’s great, of course. But, trying to write this, I can’t tell you how many videos I watched, of women begging you not to become a rep, not to drink the Kool-Aid, or not to even buy a pair of leggings, not to waste your money. I beg you not to do the same. It’s a disaster of a company, and a disaster of an investment in your future, if you are considering become a consultant. But the $5K in the bank.

MLM Isn’t a Business

Okay, I have to start here. Most people, namely women, who get involved with something like LLR, start calling themselves small business owners, and get really defensive about that point. Don’t get me wrong, at first you are probably bringing money into your home budget, and you are supplementing your family’s income, which is great. There’s nothing like posting a pic of your new laptop, or bragging that LLR helped pay for it, or a pic of a new pair of shoes that you couldn’t have afforded last month, but thanks to LLR, you didn’t have to put it on credit. And furthermore, you’re probably working really hard, which is something not to be taken lightly; all told, you should take pride in your work. But, when you walk around telling people you operate a small business, or worse, own one, you are both lying to yourself and others. Additionally, you are literally insulting women who do own small businesses.

Let’s take that point apart for a minute with LLR as an example of all MLMs. Imagine you are a woman who owns a retail clothing store, or is even a designer for her own clothing line. As a LLR rep, do you have any design input for the line? Do you even choose your own stock to carry? Do you control inventory among local reps? Do you control which sales consultants are concentrated in your local area, or are distributed amongst your community, as to avoid over-penetration of the market? Do you work directly with the corporate center? Do you have control over your payment system, or how to control the money from your customers? Do you control training and management of your product? Do you have employees and control down-line training for their future development? Or, in fact are you trained in everything, right down to how you should portray the product, and the corporate attitude? As a LLR rep, none of these things are true. Because owning your own business means all of that falls to you, not someone else. In fact, something like LLR means you are shilling someone else’s product, and you are taking some of the profit.

Don’t get me wrong, LLR is no different than Pampered Chef, Jamberry, Younique, Young Living, DoTerra, or any of the Johnny-Come-Lately must-have products among the middle-aged mom-set that gloss through a military neighborhood, or playgroup park party. A few years ago, every wife was toting around Thirty-One bags, now no one is. In a few years, there won’t be a wife caught dead in LLR pants. And, I’ve not seen anyone wearing Jamberry stickers in about a year, when six months ago, the “accent” nail, striped or with a college logo was all the rage. It all passes.

All of the MLMs all give you a party line that sounds amazing, with a “unique,” product that you can’t get anywhere else, except that you can. I can buy mascara, pants and essential oil at the store, and online. And, no matter how many times your MLM corporate site tells you that your product is not available in stores because it’s more special-er (ha!), it’s not, it’s just a profit-driven line, used to convince you that you’ll rake it in by selling it for them, because their product is more special-er than what you can find out “there.” Some reps convince themselves that they just need the product themselves, so they’ll rep only for their own personal access to the product, which is even more insane. In fact, the true success rate of any MLM salesperson is less than ½ of 1%. Everyone else ultimately falls away, or loses money.

More accurately, less than ½ of 1% makes it to the “pinnacle” level of whatever your pyramid (yeah, they all hate being called that) has chosen to call their top success level. That’s worse than the regular economy with the 1%’ers. Most people lose money, and lots of it, trying to get there, by spending thousands of dollars on shipping, supplies, and the cost of unsold stock, trying to expand their business outside the initial circle of friends that they’ve initially taken advantage of, before admitting defeat. If you’re lucky, you take the few thousand dollars you made in the first 3-6 months and you either bank it or buy something great, then walk away, lucky. But, LLR has one of the largest buy-ins of any MLM on the market, between $5-6K, making recouping that investment a hole that’s nearly impossible to dig out of for many, and with each now box of stock that comes, the hole gets deeper. And, as you will see, LLR doesn’t exactly set you up for success.

LuLaRoe’s Corporate “Attitude”

It’s not unusual for a large cooperation to have a party-line that includes a positive attitude about both the corporation and the products. But, there is a difference between a positive attitude and Stockholm Syndrome. If you’ve ever been to an online party for LLR, you know that you’ll be watching a consultant hold up the merchandise, item-by-item, proclaiming how much they love it. It’s their favorite print ever, and they think it’s ah-may-zing. They wish they could buy it. If they could afford it, they’d buy it all. Or, they set up a time and date to unleash their stock of inventory through pictures, that are all, equally, amazing, that they’ve set teasers for, all day, and the minute, and I do mean, the minute, that they’ve been opened up for sale, the only way you can “buy,” is by commenting “sold,” and indicating the item number. It’s like a race, starting at the “on-sale” time. It’s like racing a pack of wolves for the last piece of fresh meat, and it’s meant to feel that way, exclusive and scarce.

And, if you watch more than one video, regarding stock and inventory, all of the consultants say the same things. For example, when they get their new stock boxes, they repeat the line, “it’s just like Christmas morning!” They say this because they have no control over what inventory they are sent from corporate. LLR sends them whatever they want to, likely based on what they need to sell, not based on what the reps want or need. This leaves reps the burden of unloading hideous, or burdensome stock, like the slow-moving men’s and children’s lines, and boxes with only a few pairs of leggings, the bread-and-butter of the LLR business. And, it’s no secret that a draw to LLR is the plus-size line, and that they offer a T&C (tall and curvy) line of leggings, which are often scarce in the rep’s boxes, or only in patterns that the reps are forced to “love” in their online parties, but are stuck with, because a customer doesn’t have to love them back.

The corporate attitude isn’t just about positivity all the time though, it’s about the brilliant marketing genius of its founder, DeAnne Stidham. Stidham is listed on her company’s page as a former working mother who wanted clothes that reflected her faith. With seven children, the writing is on the wall which faith that is, but with a little digging, it’s clearer: Mormon. In other words, she wanted modest clothes that covered everything. So, she decided to put a positive spin on covering our bodies. We’re doing it because we want to. We’re doing it because it’s adorable and cute in prints. So, she doesn’t so much hide the Mormon schtick, just calls it “faith,” and makes the covering bit more about making women feel body-positive. Now, we’re not covering because it protects us from God’s eyes, we’re covering because we want to feel empowered with figure-flattering prints and shapes. Hooray for modesty!

But, if it’s not already clear from her body-positive Mormon-to-faith switch-a-roo, she’s also a marketing professional. So, she had a brilliant idea about creating false scarcity and exclusivity, both things that women fall for, hook-line-and-sinker. When we think that something is special, we have to have it. LLR consultants give special, unique names like “unicorns,” having LLR fans paying through the nose for prints with Santas, or hearts. The consultants call the prints “special,” and LLR calls their prints all “limited runs,” to protect quality, and this brilliant strategy gets the credit cards flying: false scarcity. Manipulated language and sales psychology gets people to buy.

And, to top it off, Stidham has created a feeling of gentle, subtle, community amongst those who wear the clothes, by creating a special language, creating a sense of an exclusive club for those who are “in.” All the clothes have names, like a special language, but not just names, names of women that are just a smidge snooty with an added “the:” The Julia, The Ana, The Jade, The Monroe, The Madison. There aren’t any clothes named, The Jenny or The Bambi (a girl I knew once – sure she was a fifteen-year-old mom, but she was sweet). Even their payment system has a name: Audrey. When you “get” all these names, you feel like you are “in.” You can order a Julia in a XS and a pair of leggings in OS. WTF.

Wait. Was I just duped by marketing? What just happened? Somehow, this woman just convinced me that I want to be covered up, and, that all her leggings are special and scarce. And, on top of that, she gave all her clothes cutesy names, which makes me feel like I speak a private language with my friends. Damn it, I was duped.

And, it works. LLR doesn’t disclose its sales figures. But, in the last year, they’ve added over 33K new sales consultants, which is an estimated $165K in sales. LLR is exploding right now. Stidman’s mantra is: grace, charm and hustle. And hustling she’s doing, that’s for sure. If LLR is like any other MLM, it’s got a shining moment in the sun before it goes the way of the Dodo. MLMs are all a flash in the pan for how long they last at the peak. Amway is still, supposedly, the largest, most profitable MLM; but, when’s the last time you bought Amway? How often do you still buy Tupperware? It’s still around, sure, but no one can argue that its heyday was thirty years ago.

LulaRoe Has NO Customer Service

Why am I complaining about LLR, on my blog about being sick, and for so long, in so many words? It seems like a random topic, right? It is, really. I stopped MLM nonsense about six or seven years ago. In the military community, pretty much everyone is selling something. Spouses have been trading the same fifty bucks for the entirety of their careers. One wife is selling Pampered Chef, so she throws a party; but, she buys Jamberry from her friend; and, her friend buys Scentsy from her friend. The circle goes on and on, and the same fifty dollars makes its rounds until the next payday. I don’t know why we don’t just keep our money, which I do. If I can’t be friends with people, without buying their crappy products, I don’t need to be their friends.

So, LLR was no exception. But, I bent my rule this month. I have a friend who has another friend, who sells LLR. The first friend is on bed-rest from her umpteenth brain and spinal surgery, and the LLR consultant decided to do a fundraiser sale to donate the proceeds to help with her recovery costs. Oh, why not, I thought? I’ll let them add me, and I’ll go to this online “party.” I didn’t know the “rules” about posting “sold,” or that they only start at a certain time, or that I’d have to sit through an hour of a consultant holding up item after item of nonsense before I could comment on what I wanted, after being “teased” with what I actually wanted, earlier in the day. I was already annoyed by the time I saw the party start.

When I commented “sold,” on the item I wanted, and was clearly the first commenter, I thought, “well, that’s that,” right? Wrong. The consultant was experiencing a delay in her Internet, so when her comments came through, she congratulated someone named, Kristy. Three other people immediately corrected her that I was the first commenter, but she refused to budge. Kristy was the “winner,” of the product I had wanted. I was sufficiently annoyed. I was told that I could PM her and give her my information, so she could keep a look out for a similar item, and she could send me something like it, in the future.

Since I already knew that she had no control over her future stock, I knew her comment was a bunch of hooh-hah, and I was quite happy to private message her that I thought that her delay was not my problem, and that she was not being a very reputable consultant by offering a product that I’d clearly “won,” to someone else. In fact, my guess was that it was someone she knew, or that she was offering my “winnings,” to a better client. She, of course, told me that she was a small business owner, which lit my fire. I admit that I was not kind to her, but was not wrong in her business practices of not operating a good Internet connection, and not sticking to her word, when following the rules she established for her own parties. I was furious.

I complained to LLR corporate and reported her as a consultant that is disreputable and doesn’t represent their line to appropriate, and ethical business standards. I was told, by LLR corporate that I should simply attend a different party, and purchase their product from someone else, so that I can truly experience the LLR process from someone better. In other words, they don’t care, and that in fact, their primary concern is not customer service, but that I should purchase a product, or better yet, extensive amounts of products. Alas, do not ever expect customer service from LLR, for any reason, whatsoever.

The Product is Not What it’s Cracked Up to Be

In the end, the reason I actually committed to be in the party, not just join the group, was because I actually saw a pair of leggings I was willing to buy. I love peacocks, and not just like them, love them. There was a pair of peacock leggings that were adorable, and not in that “moms who wear leggings with hideous prints” kind of way; they were adorable. I’m convinced that in six months, LLR is going to ruin this legging thing, and we aren’t going to be able to wear them anymore, because they are going to wreck the trend with the over-saturation of the print and legging market. Thanks, LLR.

Anyway, I really wanted these stupid leggings. So, I was beyond bummed when I was outright cheated out of them. So, I went to Ebay, payed less for them than at this bitch’s party, and was happy to receive them two days later. I was thrilled to try on the leggings that everyone claims feel like “butter.” I’m pretty convinced, now, that the whole “butter” thing is like the “Christmas morning,” line that the consultants have said over and over again; it was just something that spread enough times, so it got repeated.

I’m not saying they aren’t soft. They are. But, they are no better or worse than the leggings I got at the Online Legging Store for roughly the same price, between $18 and $25. If you want really, really good leggings that hold your ass in, check out Spanx leggings. Or, if you want the queen of leggings, get the leggings that Anthropologie sells. They are $98 when they aren’t on sale, but if you catch them at sale time, they are $49.99. You get what you pay for, folks. The Anthro leggings are as thick as pants, and they suck in at the right places without feeling like Spanx, and they give me a thigh gap, people. A THIGH GAP! I’d pay $49.99 for a thigh gap, any day. I don’t have one naked! They are amazing. Butter, they are not, but they are comfy. The “butter” leggings feel like a soft breeze would tear them to pieces. I’m, literally, afraid to wear them too much, for fear of destroying them. And, they are see-through, at the knee when I’m sitting. I fear what my ass looks like! I’m not overly impressed.

Overall

Overall, LLR isn’t any different than any other MLM scheme, but it’s especially preying on moms. Every one of the MLMs out there preys on someone unique, but this one looks at moms, specifically. It looks at moms to do its shilling, and it looks at moms to sell to, which makes it doubly dubious. If begs moms to invest their families’ incomes into a business opportunity that is likely to yield them a small net profit, ultimately a loss, or nothing, and then it asks those moms to ask their mom friends to use their limited family budgets to buy leggings that are of limited quality, or shirts, dresses or sweaters that are of worse quality. This is preying on the most vulnerable, those who care most about their family’s income and budget, the ones who are taking that money and hoping to roll it into soccer practice, ballet lessons, and treats for the kids. In fact, they use that as a selling point. Then they alternatively claim that mom deserves a break, or a treat, like a new outfit. It’s sickening and wrong. Mom, your kid just needs you to play Monopoly with them, they don’t care if you shill stretch-pants.

Whoever Smelt It Dealt It

When I am having a bad day, it’s easy to have a lazy day. It’s easy to fall into the trap of the black hole of the Internet, and read non-important stuff. Like this amazing article about a sweet couple who shared a fart-secret for twenty-five years.

But, it reminded me of a similar story that happened to me, that I thought would be fun to share with my loyal readers and friends, and remind us all that we are equal in the eyes of the gastrointestinal gods. Folks, we all fart. They all stink. And, it’s okay.

Years ago, before I had my amazing husband, I had a pretty decent boyfriend. We were together many years, and I was happy. I wasn’t a great girlfriend because I was pretty immature, and despite being a nice girl, I didn’t know how to be a true partner to someone else. I was needy and lonely, and living in an abusive family, and I didn’t know how to be myself yet. In short, I was twenty.

But, on one of our early dates, we went to a carnival at, what I think, was my sister’s junior high, but I might be mis-remembering the location. All I know was that there was one of those blow-up bouncy castles near some of the games. I distinctly remember the motor, and the humming sound. Thank god for the humming sound, because it was gloriously loud enough to muffle the indigestion.

As my tummy rumbled, and I strained like the dickens to hold back the deluge of gas that was pressing at the gates. I knew it was going to be a losing battle; so, I let those babies rip, and prayed that the ensuing explosion would be both silent and scentless. It was neither. I could feel the rattle, and I’m surprised the energy didn’t propel me across the room. But, that fantastic bounce-house motor masked the rumble.

I had a preschool teacher once, who let some gas go, when she thought we were all settled down at nap-time. Not a rule-follower, I was wide awake, of course, and I’d rolled over and saw her do the walk-and-fart, as she passed by my cot. The image of her linen pants, literally bubbling up around her behind, which was lined up with my eye-level is burned in my memory. It’s always made me wonder how many people are keyed into my butt, not because of my glorious ass, but because I might have had cheese that day. I always think of her when I fart in public, and I’m sure I did then, because I wonder if someone “noticed” the bumpy pants. I’m sure that day was like a pants bubble explosion.

The relief that the sound was masked was only momentary, because the smell only took seconds to waft across the entire area. People in a ten-foot radius were looking at one another, and might as well have been screaming, “Gas! Gas! Gas!” This wasn’t a mere fart. People were mumbling to one another about food spoilage at the cafeteria window. Someone in a line two stalls over said something about the smell. It. Was. Bad.

I was mortified.

Did this new man of mine know?

I looked over, and he said, “I think that bounce-house motor is malfunctioning. What do you think? It smells weird.”

“Yeah. I think so too.” If I could whistle, which I can’t, I’d have done that slick thing that you do when you whistle like you’re getting away with something. But, then again, my boyfriend thought my ass smelled like a malfunctioning motor. Strangers, twenty-feet away thought it.

Then, once it had been said aloud, the discussion spread. It wasn’t just him and I that agreed the motor was malfunctioning, the people behind us in line agreed. Then, the people behind them agreed, and so on. Soon, it was an assertion. Thereafter, the people working the bounce-house were checking the motor.

And, why wouldn’t they check the motor? Whatever was causing my gas wasn’t clearing up with one breaking of wind. I was tooting away to my heart’s content, now that I had a cover-story, which certainly wasn’t improving the smell. Alas, there was nothing wrong with the motor, which shocked them, as the smell was pretty rancid for a functioning motor. Hmm, what could it be, then?

Whelp, we’d better go home, I thought. My cover’s about to be blown. So, we did. I didn’t want to hang out at a sketchy junior high fair with a bounce-house that may or may not be functioning properly, with a motor that may or may not blow at any time. My only concern now was making it home without farting in the car, and leaving the same, identifying smell behind me. Just twenty more minutes or so, and I was home-free.

Ah, fart-lies, the basis of any good relationship.

Not to worry, I told him later, and he thought it was one of the funniest things he ever heard. A girl’s fart that was so bad that it cleared a junior high gym? Not too shabby, really. It’s a damn good story for the books, if you ask me. I’ve not had one like that in years. Maybe it’s the plant-based diet now that makes for less stank?

The Promised Interesting Story

I promised you an interesting story, the other day. Well, it was several days ago. I am entitled to a pass on how long it’s taken me to get back to it, because I nearly died of pain an exhaustion. Okay, I didn’t nearly die, but I felt like death. I ended up with a nerve block, and an admission to the infusion center. Look at my bruise.

I have almost invisible veins. It get worse and worse every year. Only the most skilled nurses can find my veins. They always have to use the vein-finder machines, and even then, they take 10-15 minutes to find a vein, and usually several pokes, and often, several blown veins. This guy found it on the first poke, so I give him accolades. But, I ALWAYS bruise, and usually for several days or weeks. I'm sure that's a sign of something, like impending death.

I have almost invisible veins. It get worse and worse every year. Only the most skilled nurses can find my veins. They always have to use the vein-finder machines, and even then, they take 10-15 minutes to find a vein, and usually several pokes, and often, several blown veins. This guy found it on the first poke, so I give him accolades. But, I ALWAYS bruise, and usually for several days or weeks. I'm sure that's a sign of something, like impending death.

 

Aren’t I sad and pathetic.

I'm too old to pull off the fake pouty face, huh? Also, I'm really excited about the painting that's on the easel back there. I'll have to show you guys when it's all done.

I'm too old to pull off the fake pouty face, huh? Also, I'm really excited about the painting that's on the easel back there. I'll have to show you guys when it's all done.

I swear, I only took that selfie once. Mostly, because I don’t have all that many reasons to fake being sad. Look at what my view is right now.

Includes TWO bunches of daffodils, which are my favorite, roses, lilies, and other flowers that i don't know the names of. My husband is the best. There's also a little homemade present from my son there.

Includes TWO bunches of daffodils, which are my favorite, roses, lilies, and other flowers that i don't know the names of. My husband is the best. There's also a little homemade present from my son there.

Yep, it looks like a damn funeral home in here. That’s how many flowers my husband-of-the-century has bought me in the past week, trying to cheer me up. And, next to me, are the world’s best cookies, of which I’ve eaten FOUR, before I started writing. I’m trying to diet. So, I only ate four. I’ll have more later. Life is not bad. So, I can’t pout.

Anyway, it’s also sucky. I was down and out for almost a month. I have a hard time getting back up when I’m down that long. I can’t lie. And, when you get knocked down, over and over again, every time you get back up again, it gets harder and harder. When it takes every ounce of self-preservation to even wash your hair, put your makeup on, and get dressed, and then, you tell yourself that it’s time to get serious and try to, say, workout, and you do, but then you get sidelined, immediately, by a headache so severe that you can’t even see straight, it’s impossible to get motivated again. When that happens every time you try to get motivation to do anything, whether it’s working out, painting, writing, or even showering more than one day in a row, getting yourself motivated to even be a person becomes next to impossible.

Depression isn’t just inevitable, it’s your best friend. It’s like a part of your permanent personality. And, you can’t just shake it off like it’s a symptom of the headache, like it passes with the nausea. It sticks around. It’s as much a part of me now as my own name. It’s part of my identity, maybe more than anything else these days. I have lost so much of who I am, that I don’t know where the depression and loss of myself starts and where I used to be leaves off. Every time I try to pick up where I left off, the Chiari monster reminds me that I cannot do that, and I’m knocked down another peg. Pretty soon, I’ll learn that there are no more pegs on the ladder, and I have to learn how to exist on the ground, find a new me, and be happy with it. But, it’s a difficult reality to accept.

Anyhoo…as I was saying, an interesting story, right? It’s a long one, hang on to your hats. Or whatever it is you hang onto for long stories.

So, if that’s not enough to get a Mama down, raising a special needs kid can take its toll on a parent. Bryon and I, thankfully, have a very solid marriage, and we exist as a great team, with Collin. But, Collin’s special needs are a distinct challenge. He’s stood toe-to-toe with me and told me that he hates me, told me that he wishes I’d died, and told me that he would rather that anyone, including strangers, were his mother. Then, within minutes, scrambled into my arms, and begged for forgiveness and love, and because it’s his nature, forgotten that the prior incident has even taken place.

Collin "enraged." Kidding. Collin being silly. But, he looks "enraged, right? Well, he looks "mad," in the way that mad means crazy :)

Collin "enraged." Kidding. Collin being silly. But, he looks "enraged, right? Well, he looks "mad," in the way that mad means crazy :)

His rage is so complete, that it consumes his every cell, and then dissipates as if it dissolves into thin air, as soon as it’s exhausted itself. Meanwhile, we get to live with the echoes of those words on our souls, for the rest of time, while we comfort our baby, who is exhausted by what the rage has done to his stomach, his head, and his little body. I always picture his rage like flame that’s burned itself out on him, but left a scar in its wake, on us. It’s like a forest fire that damages the land, but burns itself completely out without harming the surrounding area.

The literature and everything else in the world tells you that the earlier you get intervention, the better, for all spectrum disorders. No shit. Collin wasn’t diagnosed until he was almost nine. NINE YEARS OLD! This is because, I couldn’t get a doctor to take me seriously until then. You know mothers, they are all hysterical, and they don’t really know what they are talking about. They’ve all read too much, or they are all self-diagnosing because they’ve read too many parenting articles.

When he was a baby, I couldn’t get the pediatrician to listen to me that he was speech delayed, despite the fact that he wasn’t even cooing. He was just an “easy baby,” and I should count myself lucky that he barely made a peep. It took until he was nearly two to get services. When he was three, four and five, I couldn’t get the pediatrician to listen that he needed evaluation for ADHD, even though he was so emotionally dysregulated that he was threatening self-harm, at five. A five-year-old that was telling us that he wanted to die! It wasn’t until kindergarten, when he began “assaulting” students with physical affection, and disrupting school, that I could get him tested. And, I couldn’t get them to evaluate his intelligence until a teacher agreed with me. It took another four years before someone listened to me about all of that not being the whole picture, and only because when I took him to the appointment, I kept pointing at my child, who was meticulously folding paper boats out of the exam table paper, and lining them up in rows, and refusing to talk to the doctor, and asked him to explain the behavior he was seeing, if it wasn’t ADHD or simply being “smart.”  

It took so long to get our sweet boy diagnosed because he's so very, very good at looking perfectly "normal." It's always been impossible for doctor's to imagine that he's not just "different."

It took so long to get our sweet boy diagnosed because he's so very, very good at looking perfectly "normal." It's always been impossible for doctor's to imagine that he's not just "different."

When the evaluation came back with Collin on the autism spectrum, no one was surprised, and Collin was, quite literally, thrilled. He was happy to have a description to match how he’d always felt his brain worked. He quickly identified with the autistic community, and participated in the Autism Speaks walk that year, raising a great deal of money. He has been immensely proud of his autistic identity, and we’re proud too. We were relieved, believing that his label would open the door to services that we so desperately needed, and access to care and answers about how to help our child.

We’ve had nothing but doors shut in our faces, ever since. We’ve been told, “no,” more times in the last year, than we’ve ever been told, since his diagnosis. In California, especially in our area, there are almost no providers for ABA therapy. We’ve been told, “no,” there are no providers that meet the licensing requirements to help your son, in your area, that can provide you care and services. We’ve been told that we can meet your son, provide you a report, and tell you how much care he should receive each week, but we can’t provide that care. In fact, someone did just that for us, without telling us, in advance, that they wouldn’t be able to provide the care. They came to our house, once a week, for six weeks, met with us, and observed Collin, wrote a report that indicated a provider should come for ten hours a week, then told us that they wouldn’t be able to come. Needless to say, it’s been frustrating.

So, you can imagine my delight when we landed on a company that supposedly did it all, and they were available. This company has a therapist, that would see Collin for individual therapy; they provided ABA therapy; and, they had a social skills group, which met once a week, and worked with the children on formulating social interaction with their peers. It sounded like a match made in heaven. They are in downtown Long Beach, which is about a thirty-minute drive, and while the ABA would be at our house, it would require me to drive to downtown LB, at least twice a week, which is not ideal. Still, if it was a great match, I’d be willing to do anything, especially at this point in our searching. I’m still not keen on freeway driving, at this point in my recovery, but somehow, for Collin, I’d make it happen. I’d practice on weekends, and I’d figure it out. Whatever it takes for my son. Whatever it takes. Always.

Alas, I called them for six weeks, once a week, trying to get them to call me back. I’ve found that getting a hold of a therapist in this field is like a straight ice dancer. One person I called, I got a hold of immediately, but the first thing she did, after answering the phone with the greeting, not of her company, but by saying “Yello!” was give me the first and last names, and locations in my neighborhood (as means of reference) of other families she works with. To top it off, she told me what conditions they have, and what she treats them for. She also told me what types of therapies she provides them. I felt uncomfortable with her, to say the least. Anyway, I finally got a hold of someone in this office, and they scheduled Collin for an appointment.

The doctor seemed like a miracle. He seemed like he was going to answer all of my hopes and dreams, and I was incredibly relieved. He was super comforting on the phone, and except for not apologizing for not calling me for weeks (I may have cried on the last message, begging him to call me back, and saying, “I’m just a mom who really needs you to call her”), he seemed like he was really ready to help. He kept saying things like “does that seem like it will help?” like he was offering me comfort and appeasement. I felt good about the whole thing.

This is a long post, right? I started writing it yesterday morning, while I was still in pajamas. Homer is an old boy, and he likes sitting with me, no matter what I'm doing. Bryon thought it was amusing that Homer was, quite literally, being a desk. I thought it was amusing too. Homer doesn't find it as amusing as we do.

This is a long post, right? I started writing it yesterday morning, while I was still in pajamas. Homer is an old boy, and he likes sitting with me, no matter what I'm doing. Bryon thought it was amusing that Homer was, quite literally, being a desk. I thought it was amusing too. Homer doesn't find it as amusing as we do.

But (of course there’s a but! If there weren’t it wouldn’t be an interesting story, would it!) the place is called Advances in Mental Health and Addictions Treatment Center, which threw me. However, it was recommended to us by our case manager, whom I trust. Whom? Who? I can never get that one right. She said she had people who were happy there, and that the “Addiction” piece is just what they are called. It’s an umbrella, that there are lots of therapists there that do other things. M’kay. Don’t judge a book, right? Collin can go to a big office that does other stuff, doesn’t mean he’s on heroin. They claim to do all kinds of things there, like treat anorexia, and even multiple personality disorder…wait, it’s called something else, now. Eh, who cares? He doesn’t have that. Or, an addiction to heroin.

Whelp, we walked in, and the waiting room, no joke, had at least forty people waiting for doctors. This place was clearly a place for county services. It was, shall we say, ghetto would be an understatement. Collin and I shared the last space, not chair, space, left to sit, which was the edge of a bench. Of the forty people waiting, roughly two-thirds were in active states of withdrawal, either shaking, choking back vomit, or sweating profusely. Some were mumbling. Many were leaning on walls, some were pacing. It was almost scary.

Then…we find out our doctor is running…two hours behind. Two. Hours.

I’d gotten a ride there from my neighbor (I made a new friend! More on her another day. She’s the best!). So, I could not, in good conscience, let this lovely person drive around, with her children, for (over?) two hours, while I waited on a doctor, for that long. So, I tried to get the girl behind the window, to tell me just how long the good doctor was going to be, and if she didn’t know, if she could please reschedule me. This is how productive that conversation went:

Me: How long is the doctor going to be?
Girl: Well, it could be a few minutes, or it could be longer. It depends on how long he spends with patients.
Me: (Duh?) Can we just reschedule?
Girl: Well, it might only be a few minutes. There’s four people ahead of you.
Me:  (OMG 4!?) Why don’t we reschedule.
Girl: Well, he only spends a few minutes sometimes.
Me: Well, even if it’s only five minutes, that’s twenty minutes.
Girl: Well, sometimes it’s only like ten.
Me: You see my point
Girl: (A look of utter confusion passes on her face and it occurs to me who I’m talking to)
Me: That would be forty minutes
Girl: Sometimes it’s less….(Shuts sliding window)

Alright-y then. The doctor started calling in patients pretty quickly after that, so I didn’t really complain. I wasn’t sure whether to be happy about it, or to be annoyed that what I thought was going to be an hour-long review of my son’s history, was actually going to be a ten-minute rapid-fire checklist, but whatever. I was just eager to get the fuck out of what felt like the dirtiest county hospital I’d ever been to. I thought about just walking out, but I’d just signed a patient intake form that said I’d be paying $75 for a cancelled appointment. I debated it anyway, but I’d just had myself a little Anthro shopping spree. I’m nothing if not thrifty.

And, I had made single-serving friends with the lady sitting across from me, who wouldn’t stop talking to me about how these “damn doctors” always double-book appointments so they can pay for their Mercedes and Rolexes; meanwhile, the “common folk” (I swear to hummingbirds, that’s what she said!) have to wait.

I felt like shit while she complained because I wasn’t even wearing anything “nice,” but literally everything I had on was hundreds of times nicer than any single thing she was wearing. I could’ve paid for her entire ensemble with my shoes, and it made me feel terrible. I wanted to just start handing her things out of my purse, whatever I could give her that I didn’t need. I know that’s not the right reaction, but I just wanted her to have more, while she sat there and shook. I wanted her to feel better. Maybe if she had some of it, any of it, everything would be easier? I know none of that’s true, but ugh! Life is hard. Then, I felt guilty for feeling like my feeling guilty was hard, for me. Oy.

So, the doctor: where to start? We got in there, a mere twenty minutes later, for a doctor that was running two hours behind. That might say all that there is to say about the guy, right? He asked me, no less than five times, whether or not I felt like we should re-do his autism assessment from the Boone Fetter Clinic at Children’s Hospital. They are one of the leading authorities for this assessment. So um, no. Secondly, why are you stressing this, and then following it up with comments like, “with cases that are so mild,” as if this is something I’ve made up and am clinging to because it’s my pet project? I didn’t chose this. I’m not foisting autism on my son because I’m bored. It’s not some sort of weird Munchausen thing. Every single mental health professional that’s looked at him, for more than a second, has agreed, well, except for you.

Then, he kept stressing, “ADHD, when it’s a legitimate diagnosis,” while my son was climbing on top of his sofa, and rolling across his rug like a puppy, occasionally, barking. For real. Apparently, this was not hyper-active enough for him, or it was normal behavior for an almost-ten-year-old, I’m not sure which. He said “when it’s legitimate,” more times than I could count, but enough times that I was getting pretty annoyed with him. Between asking me if I wanted him re-assessed, and stressing that his ADHD might not be legitimate, my mommy radar about this guy being a potential ass-hat was going up.

When we stood up to leave his office, to schedule his therapy with one of the therapists in the office, and get him set up for the social group, it finally dawned on this guy that he should, maybe, talk to Collin, the patient. So, he sat back down, and addressed my son:

Doctor: Oh, hey what do you have there?
Collin: My erasers (Collin is fixated on these small animal erasers right now, that come apart like puzzles)
Doctor: Oh, they look really neat. Show them to me
Collin: Walks to doctor and begins speaking inaudibly
Doctor: I can’t hear you. What did you say?
Collin: I said that they come apart. Like this (shows him one but is now refusing to look up, and is pacing and rocking back and forth)
Doctor: They are really neat.
Collin's eraser collection.

Collin's eraser collection.

That’s it. That’s the entirety of the conversation that he had with Collin. He made no comment about Collin stimming, none about his refusal of eye-contact, none about the immediate shift from hyper-activity to totally inappropriate social behavior. He made no mention of the fixation and extreme knowledge of a random topic like erasers for God’s sake! Nope. He’s just a normal kid, I guess.

At this point, the doctor gets up, and leads us down the hall to schedule us with another therapist for weekly one-on-one therapy, and to set him up in the social group. He indicated the care with which he chose a therapist for Collin by selecting any therapist from the pool who could see him at 4 pm, not one who works well with children, or one who has special training for children on the spectrum or social issues. Nope, just a therapist who can see us at 4 pm. And the discussion of his personal information, in a hallway that had no less than twenty people crowded around the counter made me feel like his care was both personalized and private. Then, he reminded me again that we could have him re-evaluated, and that minor cases of autism have the best results of “cure,” with early intervention.

I bristled especially at mention of the word “cure,” and again at “re-evaluation,” and wanted to get the fuck out of there. But, I had to pee. So, I asked for the bathroom key, and I was promptly told that they door is “permanently” unlocked, so I can just go. The door was not unlocked. It was locked. It couldn’t have been more locked, unless it weren’t a door, and it was, in fact, a wall. Nonetheless, a person was in the bathroom, which meant I just had to wait until she was out, and then catch the door, before it closed. Mind you, this wasn’t a single-occupancy bathroom. Nonetheless, while a person is peeing, you can’t very well ask them to open the outer door, now can you? Well, you can, but she won’t open it.

I found out that this was the trick, from who I can only assume was a meth addict, based on her missing teeth and facial sores, who was also waiting in the hall, for the bathroom. Still, she was a nice meth addict, and clued me in on how to use the bathroom. I insisted that Collin come into the ladies’ room with me, something I’ve not made him do for a long time, and he kept asking, loudly, why he couldn’t wait in the hallway.

“Because,” I kept saying, in that hiss-voice that parents reserve for situations that mean stop-asking-it’s private-and-I’ll-tell-you-in-the-car; but, kids universally take to mean but-I-need-to-know-NOW! So, of course, he kept asking, and I had to keep saying, “I’ll tell you later!” I didn’t want to say, “I don’t want you standing in the hallway alone.” I especially didn’t want him to be standing in the hallway alone with a back-pack that may, or may not, in the eyes of the clientele of this particular office, contain an iPad, or a laptop, or an iPhone, or any other combination of steal-able items for people in active abuse.

I didn’t want my nine-year-old to know what it feels like to have his backpack ripped off his back, and to become the victim of a crime, while his mother is standing a few feet away, leaving him helpless. Worse, I don’t want him to, forever, look at people who are trying to get better, as potential criminals, the way I was, at that moment. I want him to be full of hope and promise. I don’t want him to feel like he has to guard his back-pack, or his little body. I want him to let me do that for him, for as long as he possibly can.

It was, at that moment, while we were in the bathroom, that he realized his Batman sweatshirt was missing. He was sure that he had worn it into the Doctor’s office, and he was sure he’d forgotten it in there. We went back upstairs and asked for it. Nope. We’d looked in the waiting room. Nope. We looked in the hall. Nope. We looked everywhere we’d been. Nope.

So, we had to have a long chat about how when people, in places like this, steal things, we don’t have to like it, but we have to recognize that maybe it’s an act of accidental charity. That person needed it more than we did. Maybe it was a little boy who really liked it, and they took it home; or, maybe it was one of the many women in the waiting room, and they took it home for their own little boy. So, we should be grateful that we helped someone today. We should be even more grateful that we can afford to go right home and replace it, and that we are comfortable enough to do so.

We don’t have to be happy that someone took something that didn’t belong to us, but we can be happy that we aren’t in the position to have to steal what isn’t ours, in order to have what we want. My brave and sweet boy didn’t shed a tear, and was actually really sweet about it. He imagined all kinds of scenarios in which a happy little boy got his sweatshirt, as a great and wonderful gift, and he was really glad that someone was to be made happy by it.

Then…we got in the car, and realized his sweatshirt was there! Still, I was a little uncomfortable with the idea that we would potentially be visiting an office where the fact that his sweatshirt being stolen didn’t seem like an unreasonable possibility. In fact, it seemed obvious. And, I wasn’t being judgmental, or ridiculous. It was definitely the kind of place where a kid’s sweatshirt would’ve been stolen. When we went back to the office to ask for it, the doctor said, “probably got stolen.”

Still, when I got home, I wondered if, maybe, I wasn’t just feeling overly defensive about what the doctor said, or overly judgmental about the place as a whole. I make a pretty big effort to really see the world from all sides before I make a call on things I’m unsure of. I make sure I get another opinion if I’m having a really negative opinion on something. It’s gut-check time, right? I gave the run-down to my friend in the car, and she said the whole thing sounded icky, but she’s my friend, she’ll agree, maybe.

So, I called Bryon, who will always be honest with me. He’s my husband, but he’ll tell me if I’m being a brat. The first thing I said to Bryon was, “I am going to tell you this whole story and you tell me if my funny feeling about this doctor is warranted.” Bryon said, “Stop. Don’t bother telling me the rest. Your feelings about care for our son are always right. You’re his mother. When have you been wrong?” Awww. I mean, come on! But, I made him listen anyway, and begged him to tell me if I was being too quick to judgment.

He said that the doctor was an asshole and to call him back, and cancel Collin’s upcoming appointments, that we’re never going back there again. Ever. I feel better about it, and we’ve not been back. But, it puts us back to square one with therapists. Again. Now, we have no one. Again. No therapists. No ABA. No groups. Nothing. Again.

My boy doing his homework today, while eating Skittles. He can't help eating junk food. His mother ate all the "Good Thins," leaving him with no choice but to eat the crap. Bad mommy.

My boy doing his homework today, while eating Skittles. He can't help eating junk food. His mother ate all the "Good Thins," leaving him with no choice but to eat the crap. Bad mommy.


P.S. I had to share this with you guys. It’s the first Common Mistake Monday video I made for my students! Yes, it’s super lame. That was the point. And yes, my students DO, indeed make these mistakes! You’d be surprised how often! I LOVE making an ass of myself for my students. The DUMBER you make yourself look, the better! If you make yourself look dumb, they don’t mind asking you what they perceive to be dumb questions! Can’t wait to do another one. I think they liked it!!

 

 

Why Big Pharma Doesn't Care About You

There are lots of things you can think of, in passing, or even for a sixty-minute Nightline episode, form a brief opinion on, and then forget about, when you have the luxury of being relatively healthy. But, those things take a central role in your life when your life is dominated by doctor’s appointments, prescription management, and referrals. Life looks different. So,let’s have a heart-to-heart about “big pharma,” for a minute. I’ve mentioned it before; but, let’s delve into a kinda boring topic.

This is me....here I go....Gosh, I'm cute.

This is me....here I go....Gosh, I'm cute.

It’s a term that gets thrown around loosely, as if there’s a boogey man out there that is menacingly lurking in the corner of your doctor’s office, sneakily dipping his fingers into your medical treatment, like a Svengali, made of money. While I’m not naïve, and there is a business to medicine, the small-fry patient-doctor relationship is not as adversely affected as I think people want to believe.

When we are truly sick, or chronically sick, we want to blame someone, anyone, or anything for why it’s so. We are angry that no one’s listening to us, or that no one has listened to us for so long. We believe that there are cures out there that are being kept from us, being held back for more profitable ones, or medications being sold to us, instead of being prescribed. This is especially easy to believe when we are sick with something chronic, or with something incurable. It’s easy to feel betrayed by a system that hasn’t felt like it was on our side, when tests weren’t ordered, or results not delivered. That’s why it’s so easy to believe that cancer can be cured by baking soda, or that not your doctor, but some doctor has the key to a cure locked away somewhere, but won’t reveal it, for lack of profits to “big pharma.”

But, when we backup a second and realize that, at the core of a doctor-patient relationship are two people, the idea of an amorphous, threatening indistinguishable and intangible force is difficult to believe. I have a hard time believing that, when I look into the eyes of my doctor, who’s watched me cry, that he doesn’t want what’s best for me. Last weekend, he put his newborn daughter down, when we called him after-hours for help. This is the same newborn daughter for whom he dropped all pretense of “doctor,” during our last appointment, showing me dozens of pictures on his phone. I have a difficult time believing that he’s being secretly manipulated by a cloaked figure called “big pharma.” All of these same doctors that you may want to believe are being manipulated have real daughters (sons, wives, parents) and are real people too; I just can’t personalize them like my doctor because I don’t know them.

I read, all the time, especially on message boards, every time someone gets prescribed a new medication, how it’s probably because a doctor was most likely getting a kickback from that pharmaceutical company, not because he was motivated by patient care. I’d rather not believe that there is a large portion of doctors (or humans!) out there, that would put the health of their patients beneath a free cruise, or a second home. That’s not so simple as insulting someone; it’s cruelty at its basest form. It’d be like telling you that you’d rather collect grocery bonus points on peanut butter, putting your name in the hat for a chance at a sweepstakes trip to the Bahamas, than worry about the fact that your kid is allergic to nuts. “Let them eat cake!” Right? ***

There’s a really amazing website, called Open Payments Data, which allows you to put in your doctor’s name to look up, down to the penny, exactly what pharmaceutical companies have given them money, and for what purposes. I’ve yet to come across any doctor, personally, in any specialty, that has had more than $2,500 of pharmaceutical “influence” per year. Phew. They are practically shills, right? Of course, here's the rub, you have to trust the "government," if you want to trust this site, because it's a .gov site. Don't get me started on you guys, who refuse to trust that.

Although, one of my surgeons made a pretty penny last year from a company called Medtronic, and by “pretty penny,” I mean around $50K. So, I looked up what it means to make money under the heading “licensing.” It turns out that his expertise lead to a breakthrough in his field, and they are paying him for use of his new procedure and equipment, similar to a trademark, or patent. And, they have him lecturing on its potential application in spinal injury and paralysis patients. Having this data lets you ask the right questions, not assume that doctors are automatically been given money from a conglomerate. We want our doctors on the cutting edge, researching, and staying current, but we want them to do it for free? That seems unfair.

In 2013, the article, “The $1M Mistake” was published. It tried to shake our preconceived idea that doctors are the financial elite. In fact, it shed light on the fact that doctors are, mostly, underpaid and their time undervalued. The notion that they start med school wide-eyed and driven to help their fellow-man, but somewhere along the way, take a class about Bentleys and McMansions and fall prey to double-booking patients and the allure of “big pharma” shilling, in order to satisfy their greed is insanity. It turns out that while a doctor might make more than, say, a line-worker, they don’t make the money we think they make, especially considering the education, training, and long hours they work. A patient’s perception of us versus them, rich versus poor, elite versus working, is just another barrier between people helping people, and between people being people, together.

Okay, stepping down from my soapbox now. I have an exciting and weird story to tell you guys tomorrow about Collin's visit to the "therapist," we finally found for him. If I can get my ducks together to type about it today and tomorrow morning. Ducks are so hard to line up. They are always getting feathers and poop everywhere. Plus, the quacking. Dear God, the quacking!

I had this beautiful idea of reversing this image to stepping OFF the soapbox. I couldn't figure it out. So, do it in your head. I'm a beautiful, damn unicorn. And, I'm stepping off my soap box!

I had this beautiful idea of reversing this image to stepping OFF the soapbox. I couldn't figure it out. So, do it in your head. I'm a beautiful, damn unicorn. And, I'm stepping off my soap box!

***The Marie Antoinette story about her saying “Qu’ils mangent de la brioche,” which translates to “let them eat cake,” is likely fabricated. According to historians, that line has been attributed to several other women, including Marie Therese. The fact that Marie Antoinette was soft-hearted, and donated often to the poor, and to charity, seems to have been forgotten, and her legacy has lived on in a misquote (probably because she was still aristocracy!).

P.S. I knew I minored in French for a reason. I could translate that French sentence! Don’t let anyone tell you that a French degree is useless! I was also able to order croissants and crepes in Paris, with minimal trouble. And, asking for bathrooms? Forget it! Pas de problem!

Lessons From This Flare

Chronic illness comes with random “rewards” and things you don’t really think of. There’s lots of bits and bobs that you don’t imagine, that become a really big part of your life, when being sick becomes the biggest part of your life. Here’s a few silly little bits that I’ve noticed in the last few days.

“Random” Increases in the Credit Card Bill - During a Flare

When I have a pain flare, that crashes me in bed, or on the couch, I live in the world vicariously through Amazon, Anthropologie and Ulta (primarily, but not exclusively, of course). In other words, I imagine what I would wear, how I would wear my makeup, what fancy soap I might wash with, if I showered, and what I might read or do, if I moved more than a centimeter. I don’t actually use any of these items for weeks beyond the flare, but I damn well buy them, in anticipation.  

Most recently, I bought this thing. It’s a bit out of my comfort zone, but I’ve wanted to dare a wrap/kimono/poncho-type sweater thing for a while. I’ve given up on the idea that I’m too short, or too anything to wear clothes I’ve longed to wear. I’ve been watching the sales for one, and poof, finally hit a good one, at the right time. You always know you are getting something good when the model looks ambivalent, or even annoyed to be wearing the product. Bryon loves my sales-watching. It got me a $499 coat this year for Christmas for less than $150. I wouldn’t be able to dress the way I do without hawk-eyed sale-watching. The Anthropologie sale rack and I are very well-acquainted.

Photo is a screenshot courtesy of Antrho. Obviously, I didn't take that. I won't be that tall. But, i can wear boots like that. And, I can un-comb my hair.

Photo is a screenshot courtesy of Antrho. Obviously, I didn't take that. I won't be that tall. But, i can wear boots like that. And, I can un-comb my hair.

Thank goodness for a husband who tolerates my habit of pretending to be normal when I’m sick, and therefore spending very non-pretend money on presents for myself. When I’m not in a flare, I spend like a normal person; actually, I spend less, so it averages out.  They should make a rewards card that doubles points when you spend insane amounts, all at once, and then zero amounts later. In other words, I want rewards for being me, because I’m special. I’m a snowflake, dammit.

I was looking for a cute picture of a snowflake, and the Google machine gave me this. I couldn't resist.

I was looking for a cute picture of a snowflake, and the Google machine gave me this. I couldn't resist.

I guess I’ll have to make do with the Ulta rewards I’ve earned, so far, this year. I’m saving it for my next flare, so I can go bananas on randomly colored eye-liner that I’m only just getting brave enough to wear beyond the boundaries of my hallway.

The Appointment Line

The military health system is take-the-good-with-the bad.

And then you have....Tricare? Doesn't have a good ring.

And then you have....Tricare? Doesn't have a good ring.

We don’t have to worry about the ACA being repealed because the Cheeto-Elect hasn’t written a policy that covers self-tanner, prostitutes, golden showers and syphilis-prevention, but not abortions, or birth control, because damn, that’s amoral! Who am I kidding? He can’t write! But seriously, I'm so grateful for military healthcare, because we don't have to worry about it.

Anyway, the worst part, and I kid you not, this truly is the worst part of Tricare (at the moment), so I have nothing to really complain about, is that Tricare thinks it saves money to remind patients that they have pending referrals. An automated line calls you every three days with a recorded message, telling you that “the patient born on XX/XX/XXXX has an active referral and should make an appointment.” Because I have approximately a million specialists and two million referrals, I get calls every day (because they are staggered). Because Collin has approximately half a million specialists, he gets calls every other day. Ironically, their efficient system has no stop-gap measure to notify itself that the appointments have been made. It’s a very specific type of persistent telemarketer.

Guilt Over Random and Specific Things

I watched an interview with a millennial star, a young Justin Bieber-ish-Clone (I’m so old!) who thinks they are the shit because they do movies, make music, and are also trying to change the world, one Tweet at a time. He made me feel terrible because he talked primarily about how if we all just stopped using straws, we could eliminate some staggering amount of garbage, in landfills, every year.

The specificity that it was straws made me feel like the shittiest person in the world because, well, I use a lot of straws. Tilting my head backward, to drink hurts. “Oh, but Rachel,” you say, “you have an excuse, it’s okay.” But, do I? I feel like when we know we could do something in a gentler way, none of us has an excuse to do something in the worst way. That goes for anything from using too much trash, to simply being nicer to one another. Open a door, hand a pan-handler your change, thank your waitress, be kind.

With a severe lack of appetite, I barely eat as it is, so I drink a lot of smoothies. Know what doesn’t go down a regular straw very well? Smoothies. Bryon found these amazing, massive, use-extra-plastic smoothie straws! They are even more wasteful, but also even more awesome. The whole idea is so plaguing to me, I think of it all the time. So, I wash straws and reuse them for days.

What’s my point? When you are sick and have a lot of time on your hands, you both have the time and the energy to wash straws, and to care about washing them. You become vexed by stupid stuff, and then wondering if it isn’t stupid after all; in the long run, it’s the small stuff that adds up to changing the world. Damn straws!

While writing this, to add some links though, I found these. Stainless steel, reusable straws. Guess whose Amazon Prime account got some more activity today?

Bryon is very excited about something else we get to hand-wash with a special brush. It recalls us to the days of Doc Browns baby bottles with the countless pieces and the itty-bitty brush. Shudder.

Bryon is very excited about something else we get to hand-wash with a special brush. It recalls us to the days of Doc Browns baby bottles with the countless pieces and the itty-bitty brush. Shudder.

Yep, got some. I even got some smoothie-sized ones.

Apparently, the no-straw thing is a big deal for the National Park Service, too. I always knew it was a no-straw zone, but learning more every day. Phew, you learn a lot when you’ve got time to care about things like straws. See, what I mean. Being sick comes with both, for lack of a better word, punishments, and perks.

Other Random, Disconnected Sick People “Perks” From This Flare

  • Sun Glare on the TV, but you can’t move because of pain, to either shut the drapes, or change angles. Alas, until the sun reaches its peak, half the television might as well be in shadow. Such a “first-world,” problem, a term I hate. A problem is a problem.  

 

  • I found a new perfume that I love from free-with-purchase Ulta samples. Taking “French” showers because both I stink, and my pajamas stink from lack of showering helps force you into the sample bags. Daisy, by Marc Jacobs. If you are curious, it doesn’t smell good when your son uses all of your samples, all at once, several sprays each. He did it about five days ago, and the bathroom still stinks. What’s the problem here? Daisy was over $80. It was a better deal to buy the gift set. Oh well, another present for me! I’m too old for drugstore perfume, right?

 

  • Running out Netflix shows. Theoretically, this is impossible; but, the reality is that indecisiveness is the actual problem, so I scroll, and scroll, until exhausted, I just stop on the first thing I see. Did you know that there is a whole section devoted to weird sex habits of the English? I didn’t. It was an accidental discovery on an incredibly misleading title. Now, Netflix thinks I’m a pervert, with a very specific interest in the sex lives of middle-aged Brits.

 

  • I’m home so often, that I can distinctly tell when someone has made a home, or auto-improvement that is “noisy.” For example, the mini-van down the street, has installed a very loud, and very piercing backup beeper, just in case its ever involved in a, well, there’s no way to finish that sentence logically. It’s a MINI-van. It doesn’t need a backup beeper. That’s insane. This is how I imagine the conversation about getting it installed going:

 

Female of Household: There’s lots of kids in this neighborhood, dear. I think a beeper would be a good idea.
Male of Household: Don’t you think it’s overkill?
Female: No...because....
Male (knowing he’ll lose anyway): Yes, dear
  • I’ve learned that Loki truly does like to lick your face. And your hands. And your eyes. And, he thinks he can fit his head in your mouth. To what end, I have no idea, but he’s determined to do it, every time I yawn, which with muscle spasms, happens a lot. I’m not sure what he hopes to find in there, but he’s a black cat, so maybe he’s looking for his soul. I should clarify that it’s really only my face, hands and eyes he’s interested in. We’ve bonded, which I can’t say that I hate. I love those darn animals, except that he likes to do his soul-searching at 4 am.
Ugh. I'm smitten. He can do whatever he wants and I forgive him. Look at that little widdle face.

Ugh. I'm smitten. He can do whatever he wants and I forgive him. Look at that little widdle face.

  • My pajama radius has expanded to, pretty much, anywhere. And, it doesn’t matter what kind of pajamas I’m wearing. I used to put sweat pants on, if I were getting in the car, leaving the house, letting the dog out, or getting the mail. Now, I don’t care. I drive Collin to and from school in footie pajamas and a robe. I stand on my patio that way with Daphne. This flare broke me for good. Considering lots of my pajamas have hoods and tails, because they are adorable, you’ve got to be pretty confident in your game to let that radius expand. “Why yes kindly neighbor, I am wearing a kitty tail. What of it?” My radius is only getting bigger. For “How I Met Your Mother Fans,” I’m thinking this is similar to the underpants radius rules, which still stand firm, for me, at shower to closet.
Urban dictionary, keeping all of us old people from sounding like fuddy-duddies with the youths.

Urban dictionary, keeping all of us old people from sounding like fuddy-duddies with the youths.

It's NOT a Fitbit!

It’s not a Fitbit. Fitbits are stupid. They are for housewives who polish off their whipped coffee drinks in the locker room, as they change for Pilates, and then pop by the smoothie bar on the way out, log their workout, and then wonder why their logged calories don’t add up to weight loss. They’re for people who can’t figure out what to do on their own. I hate them. Fitbits are for out-of-shapers who need something to tell them that they are out of shape, in a gentle reminder way, for a few months, before they get put in a drawer and never worn again. That’s why this isn’t a Fitbit. Shut up.

I used to be a lot of things before I got sick. The thing that I miss the most is the insanely motivated, insanely fit woman who couldn’t be drug out of the gym, even when she should’ve been drug out of the gym. There was no excuse good enough for me to miss a workout. Rain, sleet, snow, flu, fuck that shit, I was there. I still have extreme cold weather running gear from running in Michigan in sub-zero weather. I have dozens of pairs of weightlifting gloves, not because they are cute, but because I actually use those bad boys. I know my way around a Smith machine, just as comfortably as I do around the girly elliptical. I used to spend two to three hours there before work in the morning. Seriously. I love the gym. I once bruised my leg on a free-weight, just by being clumsy, that I left a slight scar. I don’t screw around; it was a 50-lb weight, that I had just been curling.

But, last week, at my neurologist’s appointment, where we sat waiting for a nerve block (btw: more on what a nerve block is, and a rhizotomy later - I bet people want to know that, huh?) to help stop this insanely long headache-patch, Bryon pointed out just how long Chiari has taken from me. In passing, he mentioned something that happened a little over two years ago. It was like an epiphany. It felt like someone opened a curtain and let the light in, and I’d never realized a window was even there before. It’s been over two years. Two years. Two years of my life, the life I used to have, that’s slowly inched away, been robbed away by Chiari, including one of the most important things in the world to me, my physical fitness. It’s not vanity, not my body, per se; I still look relatively the same. In fact, I’ve lost some weight because I lost a lot, and I mean a lot of muscle mass. It’s more of a sense of well-being, and a sense of accomplishment in one’s own body.

I’ve been sitting around, waiting to feel better, to feel good enough, to push harder, to be better, to get on a roll. That day is likely never going to come. Every day, I come up with a reason that I can’t work out, because I can’t work out the way that I would’ve used to have done. Whoa, that’s a crazy use of a lot of varied types of past tense, right? It may or may not be correct. Who cares? Anyway, I can’t do that anymore. If I keep waiting to be my strongest, I will only continue to be my weakest. I have to work with what I have, to build up to what I can be. The idea of resting until I’m better will only make me sicker, and weaker. I have to stop “exercising” a few days a week, and exercise every day. Period. It’s time to change. If I want Rachel back, she’s got to be back in spirit.

One of the symptoms that I brought up to my doctor was that my grip strength has gotten so poor, that I can’t pick up heavy objects anymore, and there is concern that the nerve damage in my spine has reached my hands. I can’t, for example, pick up my laptop, if it’s on its side. Or, I can’t pick up small objects, if they are heavier than, say, a small book, with only one hand. I can’t grip them, and simultaneously lift them. Bryon mentioned that between loss of strength, and lack of appetite, I may just be fundamentally weak, not suffering damage; and it occurred to me that the time that’s passed between Gym-Beast-Rachel, and Now-Rachel, it’s just been, well, longer than I realized. When days blur together, it’s hard to realize they are passing so quickly.

Which brings me to the not-a-Fitbit. I always thought these things were stupid. And, frankly, they are. But, I’ve tried a number of things to get me motivated to get myself back on track, and none of them have worked. There’s always a reason to wait until tomorrow, when I might feel better, stronger, different. But, I never do. I have put my goals in a calendar. I’ve written logs. I’ve followed other people’s plans, which of course didn’t work. Has someone else’s plan ever worked? A plan always has to be yours. I needed something to make me feel accountable, to myself, in a way that I couldn’t escape. Alas, the stupid not-a-Fitbit. Can you tell I think they are stupid, yet? And of course, I can escape it. I can take it off anytime I want. I can stop logging. Whatever.

Like the attack cat scratches on my hand too? Loki likes playing "blanket monster," which to him is attacking all things that go "bump" under the surface of blankets. He purrs away, while simultaneously trying to murder me. It's fun for all of us.

Like the attack cat scratches on my hand too? Loki likes playing "blanket monster," which to him is attacking all things that go "bump" under the surface of blankets. He purrs away, while simultaneously trying to murder me. It's fun for all of us.

Still, this is evidence that Facebook advertising works. I’m also considering a mattress in a box, like Purple, or Casper. Damn targeted advertising. I don't even need a mattress! I’ve seen ads for this thing for years now and always scanned right by it, thinking, “blah, another one of those dumb things.” Whelp, they got me, now. Anyway, this is a Bellabeat, Leaf. Specifically, it’s the Urban model. It’s the more expensive one, merely because I’m small, and this one is a few millimeters smaller than the original. As you can see, it’s already quite large, if I wear it as a bracelet, which means I didn’t want it any chunkier than it had to be! It comes with the bracelet, and an attractive silver necklace, if you want to wear it that way; or, you can clip it to your clothing. It’s super light-weight, and I’ve already gotten compliments on it. I doubt I’ll wear it as a necklace much, as I’ve worn the same necklace, every day, for almost ten years: the one Bryon gave me when Collin was born.

The Bellabeat Urban. Ooooh. Fancy.

The Bellabeat Urban. Ooooh. Fancy.

I’ve only had it for a few days, and I’m still in the “I love it stage.” It tracks every step I take, lets me track my activities, tracks my sleep, and tracks how stressed it thinks I will be, based on whether or not I’ve done enough calming activities throughout the day, including yoga and meditation exercises, which it has pre-programmed into its memory. And, of course, it tracks my period. I love the meditation. My therapist has been after me to start meditating for months, and I guess all I needed was a needlessly expensive device to force me into it. I’m not sure why I was so resistant to the idea of meditation; it was surprisingly relaxing, and I actually can’t wait to do it tonight. It was immediately calming. It wasn’t so calming when I invited Collin to join me for morning meditation. He’s not cut out for meditating, at least not without some practice.

Disappointingly, it gathered enough data in the “getting to know you,” stages, that rather than targeting my daily step count goal at 10K steps, it thinks I should only be aiming for 6K steps, which is 4K steps lower than the daily recommended count from the CDC. Yeah, I’m that pathetic. I’ve been walking pretty regularly, and have even started “jogging” a few times a week, for a few minutes, at a time. By jogging, I mean what most people would consider walking briskly; but, it has to start somewhere. I’m okay with that. It matters that I’m doing it, not that I’m doing it quickly. I hope to be doing it more often, and more quickly, eventually. That goal is good enough for me, right now. To continue doing it regularly has to be the sustained, and sustainable goal. I’m breakable now.

And, the goal-targeting is already working on me. I wasn’t satisfied with my step-count today, so I walked more. I’m sure this phenomenon is not unique for a new not-a-Fitbit wearer, but I know me; and I know that this feeling won’t wear off. It’s a kick-start. I explained to Bryon this morning that, I feel like getting myself back to myself, is like standing at the bottom of a hill, pushing a large rock, and once it gets to the top, I’ll be fine, because the downhill, is back to normal. But, before that, the rock is heavy and difficult; I need nudges and help. I already feel more like myself, monitoring my every move, and making sure I’m doing exactly what I’ve told myself to do. Every rep, every step, every day. I need to be accountable to someone, even if it’s myself.

I know that the real Fitbit is probably “better.” It probably does more, and would do neater things; but I hate them, and they are stupid. Have I mentioned that? So, I’m happy with this one. Shut up about your logic. The targeted goals in all the areas that I need to be focusing on here are going to help me not waste another two years: sleeping better, exercising better, and finding ways to release stress for pain relief. Yay for it not being ugly. Well, not as ugly as it could be. At least it’s not a hot pink, or boring black, plastic bracelet.

New Year: New Headache!

I had a procedure called a rhizotomy, just before New Year’s. This sounds really cool. It sounds like my beak of a nose should be smaller, right? No, just me? Yeah, yeah; I know that the word for that is rhinoplasty. But, it sounds similar, so maybe it’s like the back-alley version, or the cut-price version.

I shared this picture before, but this illustrates my point beautifully. See? I have a big nose. Bryon doesn't believe me, but he's blinded by love for me. It's giant!

I shared this picture before, but this illustrates my point beautifully. See? I have a big nose. Bryon doesn't believe me, but he's blinded by love for me. It's giant!

It’s not. A facet rhizotomy is basically severing nerve joints to relieve back and neck pain. They use x-ray guidance, and they burn your nerves, in very specific spots. My doctor is awesome-sauce, so he knocks me out hard-core, and I sleep for like twelve hours, afterward. He also pumps me full of some good pain drugs, so I feel pretty happy with him about the whole thing, when I “wake up,” for the car ride home, just to be tucked back into bed. I feel like “oooh, I feel like this procedure helped.” Of course, he’s a damn liar at that point, because when you wake up twelve hours later, your nerves hurt, and it’s all been a lie.

See, a potential side-effect of a rhizotomy is that the pain can get worse for a few weeks. Worse. Way worse. Like worse than you could possibly imagine. For weeks. The idea is that after those few weeks, the pain subsides, and especially in conjunction with PT, it’s supposedly like skipping through a field of daisies. But, those first few weeks are like death. They warn you that it’s an “increase of symptoms,” but because you’d be willing to try anything to make the pain stop, you can’t imagine that an increase of symptoms could be much worse. It can be

After my twelve-hour drug-induced nap, I woke up feeling a bit worse for wear. Then it hit. The pain was intense. Right at the nerve, it felt, literally, like someone had a knife right in my skull. This is not a metaphor. A knife. Right in my skull. I kept arching around, trying to escape it; but, it would only feel better if I was pressing on my head, hard. Because my neck muscles, especially at the base of my skull, are so weak, I have no strength to gather around this weakened area. A triggered spot in my weak neck causes a chain reaction of symptoms. Within hours, the whole thing had exploded in pain. I was curled up in a ball, rocking back and forth in agony. I’ve been alternating between migraines and Chiari headaches since January 2nd.

At my best, I’m curled up in bed, in the same pajamas and robe, for days on end (ewww), watching television and reading, trying to remain as still as possible, and cozily enjoying a 2-3 on the pain scale. At my worst, which happens about twice a day, I’m packed in ice. We have two ice bags, the old school type with screw tops, and about fifteen ice packs, that work well around my neck and across my face. Bryon packs them completely around me, so I’m covered, and then holds my hand. He takes my blood pressure continuously, making sure we don’t need to go to the ER. It’s been a fun time for all of us.

This isn’t the first rough patch for my head. It’s one of the longer ones. For sure. Sometimes I get a headache patch that lasts a week or so, sometimes longer. I know that this one has scared Bryon a little, mostly because the “bad” days of it have been more frequent. He’s taken control of his fear by creating a tracking chart in Excel. My little nerd. He sits down with me, every day, and asks me about two million questions about every symptom in my body, and then takes all my vital signs, and cross-checks them against all the weather data. He’s convinced there’s a possibility that there’s correlation with the pressure outside.

Mostly, I’m just bored. I’m ready to get out of bed! I’ve been in bed for four days now. I was on the couch for two or three before that. Now, I’m just ready to move, move, move. I’m sick of sitting and laying down. Being sick is boring. But, my headache comes back when I even get up to go to the bathroom; so, I’m stuck sitting here. Ugh. It even comes back doing things like typing this for too long. Boooooooorrrrrrreeeeed. How much longer will this last?

I see my neurologist on Friday and my pain guy on Wednesday. Wish me luck that one of them gives me a magic cure. All of my docs are in the loop, and all of them are concerned. The surgeon has me back on the "strap the thing to your head" routine, and call me in the morning route - but he's even concerned. Everyone is in the know, and no one is happy about the increase of my headaches, especially because they seem to keep happening. Hopefully, they decrease in intensity, and frequency. Here's hoping!

The best thing about this is that it's not even a surgical sponge anymore. it's a sock. Yep, a sock. The UCLA super-surgeon gave me approximate dimensions of A SOCK to strap to my head. The sad thing is, it worked! This is me with a sock-strap and an ice collar. So, for days, I have been walking around with a sock strapped to my head. This is how lunatics start. Pretty soon, I'll be walking around, pushing a shopping cart full of my precious cargo, and wearing a housecoat. Oh, and aside from my big nose, I also adore that when I make a pouty-face, my chin looks, simultaneously like a witch chin, and like a weird geological map of an undiscovered land. Bryon thinks i'm beautiful. He's weird.

The best thing about this is that it's not even a surgical sponge anymore. it's a sock. Yep, a sock. The UCLA super-surgeon gave me approximate dimensions of A SOCK to strap to my head. The sad thing is, it worked! This is me with a sock-strap and an ice collar.

So, for days, I have been walking around with a sock strapped to my head. This is how lunatics start. Pretty soon, I'll be walking around, pushing a shopping cart full of my precious cargo, and wearing a housecoat.

Oh, and aside from my big nose, I also adore that when I make a pouty-face, my chin looks, simultaneously like a witch chin, and like a weird geological map of an undiscovered land. Bryon thinks i'm beautiful. He's weird.

Daphne The Great

4:30 a.m. (look, getting it right more often): Are you up? I’m up. Everybody say haaaay-ooo for withdrawal insomnia.

The things your mind comes up with when you are tired, right?

The cats are up. Mostly, because I’m up, and they do what I do. I’m sort of their ringleader. Okay, I lie. I’m their bitch; but, they follow me around a lot because I have the treats and the soft touch with the wet food.

We’re missing an animal here this early morning. So, I'm going to talk about my dog, for a rambling bit. M'kay?

She's glorious when she's basking, isn't she? She thinks she is, and she owns it. Work it, girl. Work it.

She's glorious when she's basking, isn't she? She thinks she is, and she owns it. Work it, girl. Work it.

She’s in the doggie hospital, and we don’t know when she’s coming home. We’re pretty worried about the stupid oaf. We love her. I mentioned before that she had been clamoring to go outside more and more often, and I feel so guilty about being annoyed with her about it now because she didn’t feel well. At least now we don't have to think about giving her up, not for one second. She's happy here, she just didn't feel well. In the back of my mind, I’d wondered if that was why she was doing it. But, it’d coincided with Bryon traveling more, and that’s something she does when he travels, so I chalked it up to that.

A pretty old picture from Virginia, but she certainly loves giving love, even if the receiver finds it a bit, well, too much. I love how tiny Collin's head is in her arms. She's so gentle. She knows exactly how much pressure to put on someone smaller than herself. You should see her "play," or rather, attempt to "play" with the kitten.

A pretty old picture from Virginia, but she certainly loves giving love, even if the receiver finds it a bit, well, too much. I love how tiny Collin's head is in her arms. She's so gentle. She knows exactly how much pressure to put on someone smaller than herself. You should see her "play," or rather, attempt to "play" with the kitten.

About a week ago, when she wasn’t just skipping meals when he was gone, but also when he was home, I started floating the idea that maybe we should take her to the vet. I got more insistent when she stopped sleeping in her bed, and when she had an accident in the house for the first time, ever in her life. Okay, she had another one when she was a puppy, but that one doesn’t count, and we’ve not spoken of the river of diarrhea (that’s the world’s hardest word to spell) since, as it was a family pact that night, never to speak of it again. The lake of shit, we called it.

Personal boundaries. Nope. Not for a Great Dane. P.S. Also, no sense of personal size. She's pretty sure she fits here. She doesn't.

Personal boundaries. Nope. Not for a Great Dane. P.S. Also, no sense of personal size. She's pretty sure she fits here. She doesn't.

Still, it seemed like, maybe it was a bunch of random, unrelated behaviors, not just one thing that screamed, “I’m a sick lil’ doggie!” And, otherwise she seemed okay. She slept on the couch. She wagged her tail. She got excited when we came home. She was so frustratingly normal in most regards, that it was hard to pull the trigger on the whole, “let’s take her in,” decision.

I know this video has NOTHING to do with what I'm talking about...but it's crazy cool. Collin had been messing with the phone, when it was new, and learned about the SloMo feature. Look how huge she looks! Well, that's how huge she is, but it looks cool.

Anyway, boy am I glad we took her in. The vet said, “this is one sick dog.” Why is it that no matter how you phrase that, it sounds like you are being sarcastic; using weird, but lame street lingo; or, trying to be covertly, and cheesily sexual about something else? One of her liver enzyme levels was so high that it couldn’t be accurately measured by his equipment. For real. Good God, Daphne. And, others were all in the ghastly range. In other words, she’s jaundiced. He’s got her on antibiotics; but, it’s anyone’s guess why and how this happened.

People often marvel at her size, and don't really get a good perspective at how big she is. This is from when we first moved into this house. This is Daphne next to the box for our flat screen television. She's as big as the T.V. So, yeah, she's not tiny. And, she's the runt of her litter, which made her the petite gal of her gang. She's 120 lbs, right now, which has her out-weighing me.

People often marvel at her size, and don't really get a good perspective at how big she is. This is from when we first moved into this house. This is Daphne next to the box for our flat screen television. She's as big as the T.V. So, yeah, she's not tiny. And, she's the runt of her litter, which made her the petite gal of her gang. She's 120 lbs, right now, which has her out-weighing me.

He said that it could be a slowly developing allergy to her insanely expensive, high-quality diet. Thanks for that, Daphne. It would be nice of you to develop an allergy to the food that we special-order for you, and have delivered to the house. No biggie, we’ll just start you on a prescription diet. I’m serious, of course. We would, but come on. Dog, stop it. Right now. She’s well trained. She might listen, even though I sound harsh right now. Right? Hope lies in strange places. This is the most likely culprit, but seems unusual, even to the vet.

Her best shots are pictures like these taking care of me. Her best skills are sleeping, napping, laying down and resting. So, when others are doing the same, she's ready to jump right on board and help out.

Her best shots are pictures like these taking care of me. Her best skills are sleeping, napping, laying down and resting. So, when others are doing the same, she's ready to jump right on board and help out.

Or, it could be a parasite, which she could’ve picked up at the emergency vet, or even their office, when she had her cyst removed in September; but that’s unlikely. Parasites come, usually, through fecal contact. Our vet is pretty sanitary, so she’d have had to have licked up something pretty icky, after something else pretty icky, that wasn’t cleaned up properly. Yummy, parasitic poop trail. Stranger things have happened. But, doctor’s offices are clean. However, animals poop everywhere, and you can’t catch everything.

One of my favorite shots of my babies, which I'm sure I've shared before. I'd been sick with a Chiari headache for over a week, missing my husband's promotion, and his party. My animals were snuggled with me, taking good care of me though. I don't know what I'd do without them.

One of my favorite shots of my babies, which I'm sure I've shared before. I'd been sick with a Chiari headache for over a week, missing my husband's promotion, and his party. My animals were snuggled with me, taking good care of me though. I don't know what I'd do without them.

And finally, it could be because her gallbladder isn’t working properly, causing the bile sludge to back up the whole system. If that’s the problem, we are in a hurry up scenario, especially with her, because her gallbladder would be pretty large, and if it bursts, she’ll die. He said that if her gallbladder walls are weak, and filled with sludge or stones, it could burst at any time, so we have to find out, and now. So, he is in contact with the traveling ultrasound vet, arranging to have her ultrasounded (Word believes that not to be a word, oh well) today, to see if it needs to be removed.

Thankfully, we also have Daphne's excellent skill set of protecting us from invisible intruders that only she can see. She warns us of these intruders by barking incessantly at them, and scaring them away. She's also very good at insisting on pristine spots on the couch, on which to take her 18-hour naps, pushing all of our pillows into piles, as shown. Weird and perfect dog that she is.

Thankfully, we also have Daphne's excellent skill set of protecting us from invisible intruders that only she can see. She warns us of these intruders by barking incessantly at them, and scaring them away. She's also very good at insisting on pristine spots on the couch, on which to take her 18-hour naps, pushing all of our pillows into piles, as shown. Weird and perfect dog that she is.

I have to pause here to reveal a secret about writing these things: I usually write for ten minutes, then screw around for 10-20 minutes, then write ten more. Or, some other “work/life” balance that sounds more important, like write, then meal-prep. Today, I’ve written ten minutes, then messed around for, like 45 minutes. I think, I don’t want to think about my dog being sick. Obviously. She went for a ride in the car with us, which she loves, because it’s endless possibilities for her, and then got left at the scary vet, when she feels terrible. I feel rotten.

Happy dog, on a happy car ride just for the heck of it, to pick up Collin from school. Yep, let her ride in the Audi. That big old beast fits just fine in the back seat, because she curls in a ball, and snuggles in.

Happy dog, on a happy car ride just for the heck of it, to pick up Collin from school. Yep, let her ride in the Audi. That big old beast fits just fine in the back seat, because she curls in a ball, and snuggles in.

I love animals. I try so hard to take good care of mine, to listen to the way they talk to me. I watch their body language, to make sure that I’m not bothering them, but doing things the way they want me to, when playing with, or petting them. I work hard to get them good food, toys and treats. I want their lives to be comfortable and happy, and I failed my girl here. Now, she’s sick, scared and alone. I just want her better, and home with us, so I can spend the rest of her life making up for it.

My current favorite picture of the other terror in the house, Loki. He was helping me read, not very effectively, I might add.

My current favorite picture of the other terror in the house, Loki. He was helping me read, not very effectively, I might add.

With a dog, I can flop all over her and spoil her with petting, love and attention, thankfully. Had this been Homer, the only way I could make it up to him would be to leave him alone, and let him retreat to the comfort of his study, away from all people. Dogs have a way of letting you love on them, the way you want to, tolerating all of your nonsense, and eating it up like melting ice cream. Cats, not so much. As a relatively cold, not all that affectionate, person myself, I think I relate more to the cats, but appreciate the need for a dog in the great balance of the universe, as I have been over-petting the cats, at this moment of dog-despair.

The whole animal clan, being animals. Animal life would be sad without any of them. Loki, you are ruining the shot with your ridiculous sleeping pose, by the way.

The whole animal clan, being animals. Animal life would be sad without any of them. Loki, you are ruining the shot with your ridiculous sleeping pose, by the way.

Okay...we were missing one animal from the cozy napping above; although Daphne understands that Frodo is a friend, not food, the cats, not so much. They will play with Frodo, if he's in his ball, which Frodo seems to delight in, fleeing and then charging them with impunity. But, outside of his ball, that's another story. Homer seems too old to bother caring, bot Loki has made it his life's mission to find, destroy and then eat that hamster.

Frodo says that the meta irony of making his stocking a rodent is a little strange, but he's down with it, so long as it gets him a present from Santa Paws, which it did.

Frodo says that the meta irony of making his stocking a rodent is a little strange, but he's down with it, so long as it gets him a present from Santa Paws, which it did.

No Sleep 'Till Brooklyn...

Or 'till Withdrawal is over..Whichever comes first!

Brace yourselves. This will be boring. This will be stupid to read. This is ramblings of a crazy person, in the throes of withdrawal-induced insomnia, in the middle of the night, for the past two days. It had to go somewhere. I couldn’t just, you know, keep it to myself, could I? Watch my crazy mind pinging, randomly.

2:48 A.M.

I’m up. Withdrawal induced insomnia is a bitch. I’ve been up for hours. But, I finally gave in to the insomnia and just got out of bed. Random thoughts, at 2:48 A.M.

Are there periods in A.M.? I always forget. Are there periods in P.M, too? Is it capitalized? Standby, I must consult the Google machine…processing…processing…It’s a.m. and p.m. for standard APA, MLA and the Chicago Manuals of Style. Well, there you go. We’ve all learned something. I probably should’ve known that. The key is that I knew where to go to look it up; and, that’s what I always tell my students. Know what you don’t know, and know where to find it.

Ping!

Before the breeze really picks up across the ocean, and the house is really quiet, you can hear the seals barking from the Seal Rescue. This is a few miles from the house. I wish we had a seal. Not a big seal. Just a small seal. I could name him Frank and the puns I could make on both the words, frank and seal, would be endless. Oh, and I’d have a seal, which would be awesome. Bryon would be displeased if I ever brought home a seal.

Ping!

If I can make it until 6 am, DAMNIT! 6 a.m. (told you, I always forget), I will be about 30 mg “ahead” in this whole shit-storm that is withdrawal. I have felt pretty lousy, but I didn’t feel terrible until last night. Today, it feels like someone is trying to crush my legs, by taking each square inch of bone, and treating it, individually, to a spa day at Guantanamo. That’s not a great analogy, what with the Geneva Convention and all. Let your mind wander to a torture-y place. It’s 3 a.m. I’m not good at the thinking. Not to feel left out, the joints are being treated to a special experience called:

P.S. A dear friend got her children a drum set for Christmas. It's currently set up in their driveway, where they've been playing it for the past few days. I think they're getting better at composing music. 

Bet you forgot about bone pain being one of the worst parts of withdrawal. I can barely move. I guess bone pain isn’t showy enough for television depictions of withdrawal, when vomit is so flashy. Vomiting is pretty easy to control with meds; although, nausea sticks around, that much I can tell you. In general, the crawling out of your skin, and anxiety, make a good showing in Hollywood. That’s somewhat controllable with non-addictive meds, but they knock you out, which isn’t a bad thing through the whole process, frankly (see, if I had a seal, I could have said, “sleeping seals off the rough spots, frankly” – is that only funny to me because it’s the middle of the night?). But, even with the helper meds, I’m a whiny, angry, grouchy, anxiety-ridden, moody mess. Yesterday, I cried about my toothbrush. Not really sure why, I just did. Toothbrushes are sad, sometimes.

Being 30 mg ahead should’ve take about 20 days. With my experience, and how my body treats withdrawal, it should’ve taken me about 30-45. It’s taken me 8. If I keep going at this rate, I’ll be done in two to four days. I’ll also become the world’s shortest supermodel, as I’ll have achieved the haute-couture malnourishment weight. I’ve lost eleven pounds, so far. Although, I think that other things have to happen for that to happen, like being discovered at a mall food court, and not being almost forty. Oh, being really pretty. But, you never know, right? I could be one of those “atypically” attractive supermodels, right? Right? Right?

Ping!

My husband made an adorably silly mistake, trying to be thoughtful with Christmas surprises. He went to Ulta to get “girly gifts.” First of all, he used my bonus points account, which I’ve instructed him to do, if he ever goes there. Good husband. Ulta e-mailed me three days later to ask if I liked my items, then listed them. Bad Ulta.

He bought me a head-wrap, the kind that black women wear to either sleep, to protect their hair, or out and about when their hair isn’t set. His theory was that because I wear fabric headbands around the house a lot, and I like bright, colorful things, this must be a perfect gift. Plus, this one looked so wide, that the bigger the better, right? Oh husband, that only works with jewels…

Which he also bought. He got me gorgeous earrings. Thus, I can forgive his lack of knowledge in the head-wrap mielleux.

Shhh. Don't tell Rachel she's a bad photographer. She already knows, but don't tell her, anyway. She's particularly moody right now. But, aren't these pretty? I like them. Sparkly!

Shhh. Don't tell Rachel she's a bad photographer. She already knows, but don't tell her, anyway. She's particularly moody right now. But, aren't these pretty? I like them. Sparkly!

Ping!

We had Christmas dinner with an Evangelical Christian family, which meant a prayer before eating. It warms my heart when people share their home and their faith with us, and to accept us the way we are. Shockingly, when we joined hands, no one burst into flames, and we were able to refrain from chanting curses that sent them to hell (all atheists know them, of course). Overall, a successful prayer.

But, we were not wrong in assuming that based on the faith, this would be a tad more than just a few mumbled words with bowed heads and hands in laps. So, I’m glad we prepped Collin about what he might expect. Collin does better in new social situations if he has time to plan his potential responses. Our boy was so adorable. There was never a more atheist-raised child in an Evangelical home, trying to fit in properly, as our son. He assumed that all prayers are done the way he’s seen in paintings, with tee-pee hands, and a bowed head.

Almost as if it was on cue, the moment they said it was time for prayer, he sat in his seat, bowed his head and folded his hands in the little tee-pee, and was ready to go. Unfortunately, this was a hand-holding-around-the-table-family. I wish it would’ve been respectful to ask them to pause their chat with God to get a camera for that moment; but, I get that it’s not.

Sometimes, you don’t notice things like that as autism, you think that it’s just a kid making a cute mistake. But, once you know it’s there, you realize why the mistake was made. He had a rehearsal in his mind (like anyone might do), and it didn’t go the right way. For most people, ambiguity means rolling with the punches when the rehearsed situation doesn’t go the right way; for Collin, there’s only the rehearsed way.

Ping!

I wonder if there’s anything about me and my family that annoys my neighbors. I think of this, every so often. Do we make weird noises? Does my patio look too gross? Do they wish I put on clothes more often to let out the dog? It’s just jammies, don’t get excited. I’m such a baby, super sensitive to noise, like Collin is, that I have to wear headphones a lot, so it makes me put myself in others’ shoes and wondering what it is that we might be doing to bother our community.

I bet it’s dog poop. She poops a lot. It’s Collin’s chore, and he can’t easily reach the garbage can lid, not with a shovel full of shit, so he only has to scoop it to a very specific, out-of-the-way corner of the yard (you see how I’m basically defending myself here?). Have you seen the size of the beast making it? Every week, or every other week, we scoop the massive pile of, what is now, roughly manure into a big bag, and dump it. By then, it’s, shall we say, molten. It doesn’t really smell by then, but it’s a mass. So, maybe we’re the poop yard.


4 a.m. the next day – told you, withdrawal is a bitch

I wish Coke came in juice box packaging. The straw would be aces. And, I bet the little foil insulation would keep it pretty cold. Still, nothing beats the can. Maybe they could just put a straw on the can. Coke should call me.

Ping!

I just hit my cat in the face with my computer. I’m a terrible person, and I’m going to pet hell. It doesn’t matter that it was an accident. His little kitten face was shocked and awed. I have nerve damage to my hands, so I have difficulty with grip strength activities, such as picking up small, but heavy objects, or opening pill bottles, for example. Anything small, that requires strength, vexes me greatly. Kitten, you were in the wrong place at the wrong time.

While he seems to have forgiven me, what with the sitting right next to me, something in his eyes suggests that he's plotting revenge. What do you think?

While he seems to have forgiven me, what with the sitting right next to me, something in his eyes suggests that he's plotting revenge. What do you think?

Ping!

Homer just pried open the hall closet three inches, wiggled his fat butt inside, meowed, and then walked out. What could he be thinking? Cats are weird. All the while Loki, nestled next to me, got intensely excited, and wanted to join, but refrained. I sensed his excitement because his but was wiggling like it was filled with bees. Homer is now, wandering the house, howling. He doesn’t like it when only one person is awake. He feels that everyone should be up to watch him sleeping, as it’s morning nap time, now.

Indeed, I’ve spent the last few hours blathering to you all, reading, or staring into space, waiting for it to be time to reasonably wake up my family. Oh my god, I’m Homer. Or, I’m a crazy cat lady, who talks into space about how silly her cats are. What’s happened to me!?

Well, I think that's all from the withdrawal insomnia front for now. This has been a realistic view of both insomnia, and painsomnia. Welcome to the world of both! Hope it's been enlightening. The worst of it should be over for me. Tonight will be rough too, but should be getting better. We shall see. You never know! Wish me luck!

I'm an Annoying Wife

These are the top three selfish things that I do that would render me annoying to any other human being, but that my family finds endearing. Well, I think they do. They tell me they love me, anyway.

I Shop When I’m Sick or Sad...And I Shop Poorly

I don’t just shop, I buy otherwise useless items. I have everything I could ever want or need.

I shit you not, this is HALF of my Frye boots and Frye shoe collection. HALF. Who needs this many boots? No one. Well, I do. If only because I'm obsessed. I stopped buying them several years ago because, well, obviously. I love, cherish, and wear them all. But, an example of why I need and want for nothing. Oh, and why my husband deserves a damn medal.

I shit you not, this is HALF of my Frye boots and Frye shoe collection. HALF. Who needs this many boots? No one. Well, I do. If only because I'm obsessed. I stopped buying them several years ago because, well, obviously. I love, cherish, and wear them all. But, an example of why I need and want for nothing. Oh, and why my husband deserves a damn medal.

In withdrawal, you feel like, well, shit. You spend a lot of time on the couch, or just lying on the floor, hoping the couch moves closer. I’ve been doing remarkably well, actually. I’ve been speeding through the process like an out of control semi, speeding down Mount Doom. But, when I feel poopy, clicking “check out now,” makes me feel better because a present is coming soon! And, when a box lands on the door, it’s like a surprise from me, to me! The trouble is, I buy ridiculous crap.

I don't spend much money these days. But, what I do buy is things like this. Taaa-daaa! Behold the idea I have birthed from my brain-hole.

I don't spend much money these days. But, what I do buy is things like this. Taaa-daaa! Behold the idea I have birthed from my brain-hole.

Case in point: exhibit A for "ridiculous crap." Still, we watched the training DVD yesterday, Bryon with a very skeptical face, and I think we can make it happen. I anticipate a very rough six to eight months on our babies. But, can you imagine if it works? No more litter! I will keep you posted on my insane purchase.

I Make Them Refill My Drink…All Day Long

I get dry mouth from not one, but two of my meds. I have cut my Coke consumption to one a day, both because, well, ew, and it tastes bad because of the dry mouth. The syrup accumulates in my dry mouth and sticks there like molasses. It’s actually quite disgusting. Tasty, right? Anyway, I’ve developed quite a taste for plain Le Croix, mixed with a splash of cranberry.

Why should this make my family hate me, you might ask? The reasons are two-fold. Firstly, I am drinking us out of house and home, going through a few cases of Le Croix a week. Since I started drinking Le Croix long before the hipsters started thinking it was the flavor du jour, I get to claim it as legitimately frustrating that the commissary runs out so often, sending us on a wild goose chase, all over town for it. I need my Le Croix. Other soda waters are good, but we’ve discovered they give me, shall we say, unpleasant side effects in the stinky gas arena. Additionally, I’ve become a pain in the ass, requesting refills all day long, like a spoiled princess. Okay, I only do this once a day or so; but still, it’s annoying. I’d be annoyed. I’m annoyed getting it myself so often, which is why I ask for the refill!

I Make Us Keep the House Cold…Really Cold

My meds, and especially withdrawal, make me hot. I don’t just mean warm, I mean hot. Hot. Hot. Hot. Alas, I torture my family with a household temperature that borders on torture. In the years that we’ve lived here, we’ve yet to turn on the heat. Only recently have we closed any windows. Our bedroom window is still wide open. Our house, at this very minute, sits at:

This doesn’t mean that I don’t bundle up to avoid the discomfort.  I’m certainly cold. Sometimes, I feel that it’s downright frigid, as it’s gotten a few degrees colder than 63. But, I refuse to change the conditions. I’ve sat in footie pajamas, two fleece robes, two blankets, an undershirt, gloves, a scarf, and a hat, and still refused to change the conditions. It’s easier to bundle up, than it is to cool down. It's a little awkward to sign for a package dressed like that though. Rather than provide an explanation to the clearly confused FedEx man, I just acted like it was totally normal. I figured it was the most disconcerting thing I could do for him, and thus the best story he could have for his friends.

Ahh, the coziness of being bundled up, reading a book. Or, am I "miming" reading a book? With white gloves, it's hard to be sure.

Ahh, the coziness of being bundled up, reading a book. Or, am I "miming" reading a book? With white gloves, it's hard to be sure.

For this, my family continues to tolerate me. They snuggle up next to me, and we watch a movie, or we play a game. My body seems to feel better, overall, when it’s cooler in the house, so they put on an extra sweater, and smile as mommy asks why it’s so hot in here. What they don't realize is that the colder it gets, the closer they have to snuggle to me. Bwhahaha! Lord help them when menopause hot flashes hit!

I love them to the ends of the earth, and I'm sure I provide them with something they find enjoyable too, because for all of my faults, they keep me around!

P.S. Isn't my kitten adorable?

I couldn't resist! Put 'em up!

I couldn't resist! Put 'em up!