Happy Zipperversary Times Two

Most Chiarians who have had decompression celebrate what they call their zipperversary. This is the anniversary of their brain surgery, a momentous occasion, because it undoubtedly changed their life, for better or worse. Either way, it gives you a battle scar, and a badge of honor. Surviving brain surgery is no joke.

 

For me, I’ve got two zipperversaries. One in May 2015, and one in June 2016. So, celebrating them both, roughly mid-point seems good enough. Either way, it’s been 4 years, and three years, respectively, since someone’s poked my brain, removed bits of my skull and spine, and in one case, drilled some titanium into my head. It sounds so…horrible.

 

I still can’t look at images of patients in position for my surgeries, because it sends me into cold sweats, or straight panic attacks. Chiari surgery is performed with the patient face down, bolted to the table. BOLTED to the damn table. Just that thought makes me shiver. I was BOLTED to a table. My body, my head, was bolted to a table. I know this, because I had bolt scabs for days, both times, when I woke up. I touched them obsessively. For some reason, this little item always skeeved me out the most, knowing that I was treated like a piece of wood you needed to keep still, in a vice.  

 

The second surgery saved my life. If I’m honest, I’d probably have eventually killed myself. Living in the state of pain I’d been left in, and in the state of rapid deterioration, I’m not sure how long I could’ve held out. If not that, I’m not sure how long the rest of my body could’ve held out. I was already on massive amounts of pain killers, just to survive, and my brain was mush. People underestimate what happens to your brain when you are on doses that high. You lose yourself. You become depressed, stop making rational decisions, and you forget time, space, and all sense of logic. Who can last forever like that? I was being treated as if I were a cancer patient, in her last days. There are months of that period that I have no memory of.

There was once a time that my jaw was so painful, on a regular basis, because of referred pain from my skull, that I would use ANYTHING handy, to put pressure on it, including the pain pill bottle that I was never far from…as I counted the minutes till I could have my next dose, desperate for relief.

There was once a time that my jaw was so painful, on a regular basis, because of referred pain from my skull, that I would use ANYTHING handy, to put pressure on it, including the pain pill bottle that I was never far from…as I counted the minutes till I could have my next dose, desperate for relief.

Celebrating these milestones is a strange thing. It’s double-edged. You recall that you survived and endured, and you remember that you overcame; yet, you also sit and remember that it means you are sick, and you were once sicker. It’s a weird dissonance. Recalling getting out of my hospital bed at Walter Reed in 2015, being forced to walk, to prove to the nurses that I didn’t have spinal damage, was terrifying. The fear that I might not be able to, is a memory that is part of my very core, because it wasn’t a “maybe,” it was a realistic possibility. The uncertainty of what was broken, what was going to heal, and what wasn’t, was very scary.

 

Now though, I know the extent of my “damage.” I’m healed, as healed as I’ll ever be, really. In fact, my UCLA neurosurgeons just reviewed my latest MRIs and reassured me that I wasn’t having new Chiari symptoms and headaches, and that my plate still looks great. My new headaches are because my neck, having been diced in half twice, is fucked up. It will only continue to get worse, over time. This happens with a spine that is weakened by surgery, and with muscles that have been hacked apart. But, I can feel “safe,” that it’s not my skull or brain. Phew. The point is that I will periodically fall apart, here or there, but I will likely be “fine,” from here on out…. probably. That’s what my annual MRIs are for.

 

Hello C-Collar my old friend. I hate to see you again. Truth be told, I need you more often than I let on. If I wore you more often, I’d have less pain. But, I hate you so much that I let you gather dust in the closet. You are uncomfortable. You are hot. You make it hard to see stuff because I have to turn my whole body. And, you are a flashing light for people to stare at you, in public. In short, I hate you and you are evil.

Hello C-Collar my old friend. I hate to see you again. Truth be told, I need you more often than I let on. If I wore you more often, I’d have less pain. But, I hate you so much that I let you gather dust in the closet. You are uncomfortable. You are hot. You make it hard to see stuff because I have to turn my whole body. And, you are a flashing light for people to stare at you, in public. In short, I hate you and you are evil.

So, I celebrate. I remember. I monitor. I remain vigilant. I remember that I’m the healthiest version of a sick person that I can be. I solider on.

 

This year, to mark the occasion, I go under the knife again with another major surgery. This time, I am having my Fulkerson Osteotomy on June 17th. It’s a ridiculous procedure that I think was invented in the middle ages, and hasn’t been modified since. It involves breaking my leg, installing some bolts, fully flipping my knee cap, and moving all my ligaments. As a bonus for all this torture, I get an entire new sheet (is that what it’s called?) of cartilage under my knee cap, grown and cloned from my very own cells.

 

It should take a full year to heal, so I’m super stoked for this. Supposedly, this was preferable to a knee replacement. I am trusting my doctor who basically told me that my knee was a disaster and he wasn’t sure how I was walking. Since it currently dislocates roughly 4-5 times a week, I’m ready for either this surgery, or an amputation.

I used to spend A LOT more time horizontal. The only thing I miss about this is that my kitties and I used to snuggle pretty close during these times. Poor Little Willow was a pretty good snuggler.

I used to spend A LOT more time horizontal. The only thing I miss about this is that my kitties and I used to snuggle pretty close during these times. Poor Little Willow was a pretty good snuggler.

 The cool part, at least I think so, is that I’m like a celebrity at my local Physical Therapist’s office, because although I go there for shoulder work right now (remember that surgery too – I’m a disaster), they all know the Fulkerson is coming. It’s a relatively rare procedure, both because most people’s knees aren’t fucked up enough to need it, and because when they are, many people choose to live with the pain, rather than face the terrifying operation. However, the PT is kind of specialized, so they are really excited about it. Plus, they are crazy excited to see how the cloned cartilage works out, because this part is even more rare.

 

This must be what it feels like to be popular. It’s the same feeling I get when I go to my tailor and she compliments both my clothes and me, every time. She always tells me that I look pretty. Honestly, I pay a little more (I think) to go to her, just because she compliments me. I’m such a sucker for positive attention. Praise me! Someone once asked me why I enjoy education and school so much, and I said, “because that’s the place where you get A’s.” I thought it was a stupid question. I think this sums me up, in a nutshell.

 

Anyway, it’s awesome to look back and remember that I was once sicker. I once thought I wouldn’t make it until the morning, leaning over and begging Bryon to tell Collin I loved him. I once thought I might not be able to read for comprehension again. I once thought I’d have to use my cane, forever. I once thought that I wouldn’t survive surgery. I once thought I’d be on Fentanyl until I died…then, I thought Fentanyl withdrawal would kill me (don’t start Fentanyl, kids). But, it all gets better, at least a little. Look at me now, starting Harvard in less than a month!

 

I’m still slower than I used to be. I’m still racking up surgeries like I’m collecting hospital bands, or cats (which I am). I’m still in therapy for PTSD, depression and anxiety. I still have memory issues and pain problems. I still have days where my body forces me to just…. sit. I still have more health problems than anyone would care to listen to, and I would care to list. But, I get up, every day, and try. I’m alive to do it. That’s what a zipperversary is really all about, that you lived to fight another day.

 

So, if I’ve got any fellow Chiarians reading this, keep trying. Keep fighting. It isn’t sunshine and rainbows with unicorns farting glitter, on the other side. It’s going to suck, some days. Some days it’s going to be terrible. But, the days that it isn’t, it’s pretty great. Hang in there. It can be maddening to read stories of post-op patients who run marathons after they heal, or who climb Mt Kilimanjaro, or become astrophysicists; but they are freaks of nature, or liars. Do you. Your Mt Kilimanjaro might just be to get dressed today, and that’s just fine!

How to Humiliate Yourself at a Tattoo Shop

I did this thing, on Saturday.

My new clover - because Crimson and Clover is my jam

My new clover - because Crimson and Clover is my jam

I’d been meaning to do it for a while. I’ve put it off more than once because it’s kind of a big step to get your first visible tattoo. I guess you can often see my back tattoo peeking out of my clothes, but I can’t see it. I can see my peacock one coming out of my dresses, but it’s barely. This was different.

 

It wouldn’t have been a story without it being embarrassing or weird in some way though, right?

 

My artist was super cool, chill and relaxed, which was awesome. And, I loved the shop I went to. So far, I have had an artist I really loved, a shop I really liked (mostly), and now both. Perfect. This place didn’t play super loud music, which was so nice. I know that makes me sound like a stick in the mud; but tattoo shops tend to have the music so loud that it’s almost painful. When you are sitting there for hours on end, and you can’t even have a conversation with the dude who is stabbing you in the body, it’s both awkward and physically uncomfortable. Plus, this place had private spaces, with doors! Doors to hide body parts! Once you’ve had your entire side exposed to third street in Redondo Beach, you’ll appreciate the small pleasure this affords the forty-year old woman who may not have anything to hide…but wants to.

 

I may have mentioned in the past, that I have a chronic illness, no? Haha, right? And, that when this illness flares, I still occasionally need to take opiate pain relievers? This is relatively rare, but when I do need to take them, it really messes with my digestive system, thanks to bile salt diarrhea, a side-effect from gall bladder surgery years ago. I have to take special medicine for that too, so that I don’t immediately expel everything I eat, within instants of eating it, directly through the back entrance. It’s such a joy. But, being overly blocked from opiates, and double-blocked from those meds is a recipe for disaster. Obviously, this is a delicate balance.

 

About two weeks ago, I had a headache. I don’t even remember how many, enough that I felt better over the course of the few days it lasted. It wasn’t a ton, but it wasn’t one or two. It always takes 2-3 days of a steady dose. All it takes is looking at them though, and I am backed up! Thankfully, my system was back on track without the assistance of any laxatives or intervention. UN-thankfully, it got back on track the day before my tattoo appointment, and it announced its reintroduction to the world with lots and lots of gas.

 

So. Much. Gas.

 

If there were appropriate words to describe this smell to you, I would. But, let’s just be accurate, and maybe that will be description enough. A person’s bowel hasn’t moved for two weeks. Nothing. Not a peep has been heard. Not even a little guy has sneaked past the gate. So, it’s two-week’s-worth of old food, and old stool that got caught up behind the guard; all of it has just been sitting there festering. That’s what it smells like. It’s not an eau du toilette.

 

I had to be there at 2 pm. By 2 pm, I’d lost about 8 lbs. and gone down a full pants size. No kidding. Does everyone’s belly stretch this much? I was hoping that I was “done,” by the time I got to the shop, and had done everything I could to assure it to be so, without “stopping” the whole process back up again. Balance, people. Balance! Soooo delicate!

 

I’d stopped eating by 10 am. I was barely drinking. By the way, this is excellent advice for getting a tattoo. Go in starving and dehydrated. You definitely won’t pass out. Totally ignore me. If this were my first tattoo, I would be a total idiot. Even for my fifth, I was a total idiot.

 

Anyway, I was doing fine. I was nearly finished, when we started chatting about what the rest of his day looked like. Apparently, they’d had a Halloween special, wherein he’d been doing black cats for $40. His whole day was little black cats. I thought it was cute. We’d had such a chill and cool session, he said he’d do one really quick, if I wanted.

 

Sure. Why not?

 

“Because, you are a ticking time bomb, woman!” says my belly.

 

So, my arm’s all done, and while he’s setting up for the cutest black cat ever, I swing by the bathroom to pee. I’m still feeling totally fine, but as soon as I made room for the gas to move down by emptying my bladder, apparently, all bets were off. I farted myself out of the bathroom, and hoped no one would go in after me. Yep, I stunk up the bathroom at the tattoo shop. How classy of me.

 

In my infinite wisdom, I’d chosen my thigh for my cat, and worn overalls to the shop. In my defense, I didn’t know I’d have to take them off, but I also could’ve chosen somewhere else for the cat. Still, the minute, and I do mean the instant I pulled them down and my artist got near my thigh, the world’s tiniest but stinkiest fart escaped. Don’t think I wasn’t trying so hard to hold it in that I was visibly sweating. To his credit, he pretended nothing happened, and I died on the floor.

 

If there’s a God, he decided that wasn’t enough torture for me. He felt that this was an amusing little play he’d created, and wanted to see it play out a little longer. So, while my ass was stuck in this dude’s face for the next half an hour, he forced my stomach to cramp, over and over again. My poor but cheeks worked harder than they’ve ever worked before. I felt horrible.

 

Literally. I was afraid I would die of holding it in. If ever there were a possibility of that happening, it was that day. And, I kept picturing the moment that I couldn’t hold it any longer, when it just burst out. The artist would be startled by the sonic boom, the lines would go crazy on my tattoo. He’d pass out and die from the stench. I’d die the thousand deaths of humiliation. We’d be found by housekeeping days later, the smell still lingering. The horror.

 

Then, it occurred to me: this dude’s face is so close to my ass right now that he can visibly see when I’m clenching, and when I’m relaxed. Please, oh please, let him think I’m clenching because he’s hurting me. Oh, the humiliation of that moment.

 

When it came time to pay, I texted Bryon about the tip he thought I should leave. I ended up tipping him almost 40%. I justified it because he was cool, did a good job, and I want to have a good artist to back to…and, because I farted in his face. Anyone’s face who I fart in, deserves a good tip. I think I’ll probably still go back to him next time. I figure the amazing tip will overshadow the fart memory, right?

 

Every End is a New Beginning: Goodbye to Teaching

Despite having my head drilled into a couple of times, and my neck muscles pulled apart like the living room drapes, I’ve been very lucky, as far as Chiari goes. I don’t have a syrinx, which hasn’t limited my mobility. My spinal damage is limited to what amounts to pretty significant arthritis, which will certainly get worse as I get older; but, I’m not going to count those horrifying mutant chickens before they are hatched. Overall, it could be much worse, and I’m grateful that it isn’t. That doesn’t mean that I haven’t had to make some serious life-changes to accommodate where Chiari fits; and that I continue to have to do so.

 

When we moved back to Virginia, Bryon, with his pesky belief in me, was excited because he was convinced that I would be strong enough to get back in the classroom to teach, instead of just working online. So, I agreed to take on two in-person classes, one of which was a class that met only on Saturdays. It was a hybrid class, in which the bulk of the work was delivered online, but we met for almost three hours, once a week to deliver in-person instruction. Oy, that’s a long class to be “on” for. Oh, and instead of it being a standard fourteen-week class, it’s compressed into eight weeks. (My other class is a standard semester, twice-a-week class).

 

I’m not sure what I was thinking in agreeing to this one, except that it’s good money, and it got me in the classroom to get me my sea legs back. I was so nervous the first day, that I made Bryon drive me. Because it’s nearly an hour from the house, he and Collin had iHop while I taught, and then they went exploring at a local park. This became their Saturday morning ritual. They became buddies with a waitress who never ceased to be amazed that my small child could eat a breakfast burger, a full order of mozzarella sticks, a short stack of pancakes and drink a milk shake. Perhaps he could pack all of this away because his mother wasn’t there to stop this glutinous atrocity, because she was too busy trying to convince a room full of freshmen the difference between too and to.  

 

Still, this meant that I was teaching three days a week. It’s funny how three days a week now sounds like a lot, when two years ago, it would be nothing. It didn’t take long for my semi-broken body to voice concerns. Within the first month, I had a headache that lasted over a week and had to cancel several classes. I’m not sure the students minded, but I did. I felt irresponsible and guilty. I’m not a class-canceller. Trust me, cancelling class is a disaster for students who can barely follow the syllabus as it is. When you change a due date, you might as well ask them to find Narnia.  Before my surgeries, I never cancelled. I used to come to class, practically straight from the ER. I’d be black-and-blue from IV’s, and I’d still show up, looking like a junkie.

 

Then..the mistakes. I ordered the wrong textbook for my entire set of classes, as an oversight. And, then for the admin side of my class, I wasn’t making mistakes, but I was almost making them, which for a perfectionist teacher like me, was enough to bring me to tears of shame. I had to have Bryon start double-checking everything I put on Blackboard, the online administrative side of classes. I used to be able to whip up a class, the syllabus, the assignments, and do the grading without even thinking. I could do that with one hand, and cook dinner with the other. Now, even with full concentration, I was having trouble keeping straight what year it was, what month assignments went into, and what week I should make a due date. I was incapable of managing. Blackboard is not designed for user error. One mistake and you have assignments due in July of 1967. I couldn’t cope anymore. My short-term memory, and my detailed memory were simply not working.

 

Finally, lecturing was an issue too. When I first started getting sick, one of the things that pushed me to really push to my doctor, was that I wasn’t functioning correctly neurologically. I was having trouble spelling, where I’d not had trouble before. Suddenly, I was spelling everything phonetically. Or, I’d be writing on the board, and forget what I was writing, mid-word. Sure, that happens to everyone occasionally; but, it happens to me, constantly. This issue only got worse, after surgeries. It doesn’t instill a lot of confidence in your professor when she is standing at the board misspelling, or literally forgetting she’s talking about. Also, it’s humiliating. Nothing says, “your professor is an idiot,” like stumbling over basic words.

 



 

I love my job. I love teaching. I love my students. I truly and deeply value their success. This meant that it was time to give up teaching, at least in person. I had to, not because I didn’t want to do it anymore, but because it wasn’t right for me to continue to do it if I couldn’t do it to the best of my ability. I was certainly doing an “adequate” job. I was making it to work, and I was getting their assignments graded in a timely manner. I was loading quality, engaging assignments to Blackboard, and I was lecturing pretty well. My students are used to my quirks of spelling, I suppose! In fact, I get all good reviews, and most of them want to take me for the next course.  

 

But, I wasn’t doing the kind of work that I felt was acceptable to my standards. I feel more comfortable online when I can spell-check. I feel more comfortable when I can have much more time to double, triple, and quadruple-check my assignments before I post them. I just can’t put myself in a position where I’m in the classroom anymore. It’s too overwhelming to my brain. Every day, several students come up to me, before or after class, and they all want to change something, add something, or modify something, and I can’t remember everything they say. It’s not fair to them. They aren’t getting what they deserve from an instructor.

 

So, this will be my last semester in the classroom. I know it’s the right decision because as the weeks tick down toward the last week, I get lighter and lighter, and I feel less and less burdened, despite knowing I still have new classes starting in the Spring. Those classes are online. It’s a relief knowing I can handle those so much more easily. My wheelhouse has changed, which is a bit sad, but also a relief, to know where I fit. I will miss student interaction, but I also love being home. I’ve noticed that as Collin gets older, he seems to need me more, not less. I think I’m right where I belong.

 

I have to accept that Chiari has taken away something that I love. It’s taken my career. Except, that it’s not taken it fully away. It has modified it. I still get to teach at home. I have learned to accept a lot of changes with my new life, and this one is easy to accept because it means I still get to do what I love, I just get to do it spending more time with my family. And, I get to keep doing it, no matter where we live. I’m okay with all of that. I can mourn the loss, but I can also look at the brightness of the future. It’s like all things Chiari: you have to choose to see the bright side, or you get stuck in the swamp of sadness.

 


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.

images.jpg

 

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.

tumblr_m0jm55SkGt1qk455to1_500.png

 

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?  

 

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.

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.

 

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!

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.

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!

Last Withdrawal?

My last surgery was in June. Yeah, we all basically know that. Because of how sick we didn’t know I actually was, I was on a lot of painkillers before my operation. And, because my surgeon, who is both amazing and sadistic, wanted me off all pain control pre-op, I had to go through withdrawal. Don’t worry, I won’t pull out my trusty soap box to proclaim the differences between addiction and dependency, yet again. However, learn them, know them; and, don’t be a butt-head.

For the surgery I just had, the one that made me bionic woman with a titanium plate in my head, my surgeon is usually pretty conservative with the post-op pain control. He generally sends his patients home with 90 Vicodin and a pat on the back. For me, a patient that went in having just previously been on Fentanyl, being sent home on only Vicodin would be the equivalent giving me a bag of M&Ms, and being told to think happy thoughts.

If you don’t know what Fentanyl is, it’s the drug that the media loves to talk about because it’s killing junkies left and right, especially in cow towns. It’s about 100-times stronger than morphine, and it’s given to pain patients and very, very sick people who are already opiate tolerant. If you take it without being opiate tolerant, it can kill you. It’s not designed to be cooked down and injected, hence the deaths. Imagine that! I wore my pain control patches on my arm, as prescribed, so I never died. Funny that, using drugs as prescribed.

Alas, because of the Fentanyl, and the fact that I’d only just gotten off morphine and oxycodone, my tolerance was too high to send me home on just Vicodin. So, my post-op meds were very high too; consequently, coming off has been a long, slow process as well. I have been taking my sweet-ass time doing it. Not because I want to, but because withdrawal sucks, and it’s uncomfortable to go quickly. If you cut a dose every couple of weeks, you feel nothing. If you cut a dose every other day, you feel like you got hit by a freight train.

I’m down to my last drug, oxycodone. I hate it. I’ve been on it the longest. And, I have been refusing to let it go, refusing to come down a dose for a while; not long, just an extra week or so. Then, it occurred to me what I was refusing to do. I was refusing to admit that I was afraid to give it up, not that I was afraid to withdraw. I wasn’t afraid of the actual withdrawal; that’s ridiculous. It just took me a while to realize what I was afraid of. 

I feel roughly okay right now. I’m not great, but most days, I’m tolerable. I have some days that border on good, or even great, even normal. I have some bad days, of course; but, most days are pretty decent. I’m afraid to upset the apple cart. What if changing this last thing is the thing that wrecks me? What if it sends me spiraling backward? And, even though I didn’t want to admit it, a small part of me was afraid that taking it away wouldn’t change anything at all, and I would still be normal, even good. What would it mean to be better? I don’t know how to be better anymore? Help!

When you spend as long as I have, as sick as I’ve been, you become locked in a constant state of fear. You are waiting, constantly, for the next time you’ll be thrown back into bed for a week, maybe more. You’re afraid to make plans, make commitments, even to your son and husband, for fear of cancelling. It’s why depression can set in, because it’s hard to move forward, knowing that your life is irrecoverably changed. Most days, I can stuff that down and charge forward, but some days, it gets the better of me. I was afraid that taking it away would be the thing that made me sick again. It was irrational and stupid.

I was holding onto the oxycodone as a life-ring, which is a dangerous game. It’s especially dangerous for someone like me who will need to continue to use this medication in the future as a pain control measure for sporadic, but not daily, use. I have to have a healthy relationship with medication. As soon as I realized it, it had to go. Now. Not tomorrow, now. My therapist thinks I’m being too hard on myself, but I’m overly cautious when it comes to these things, I guess! It feels weird to admit this aloud, but it's an honest look at chronic illness, right?

So, I set a goal of thirty days, which is coo-coo banana-pants insane. My doctor likes me to take at least four days per step down in dosage, and each step down is very, very small. This protects my body from the worst symptoms of withdrawal. My body tends not to start to notice a change until day two or three, then I stabilize at day four or five, and then I can drop a dose again. Over countless cycles and changes in meds, we’ve learned that I do best when we change doses at about every 7-10 days, rather than 4-5 days.

Mathematically, it’s impossible for me to make my goal, by reducing every 4 days. It’s also impossible, if I reduce every 3 days. It’s also impossible every 2. My goal is to show up to my appointment on January 2nd, down to almost nothing, or nothing at all. These goals are pretty rough on my body, because in order to accomplish them, I have to move at a rate of, at least, 2-3 days per dose drop. This doesn’t give my body a chance to stabilize, and I’m in heavy withdrawal, constantly.

In case you’ve ever wondered: body aches that feel like the worst flu you’ve ever had, runny nose, exhaustion, anxiety, moodiness, sweating, shakes, twitching, nausea, lack of appetite, cramps EVERYWHERE, heartburn. I started about ten days ago, and I’ve already lost five pounds. Best and worst diet in the world!

Last night, right before Bryon carried me to bed, AFTER I fell asleep whimpering. He got me to eat a handful of buttered noodles, but halfway through I tore my clothes off, right in the middle of the living because I was both, burning up, and feeling like the fabric of my clothes was tearing at my skin. Then, I put them back on because I was cold. I finally fell asleep like this, huddled in a ball to stop the cramping in my muscles. I am so sleepy because a lot of the meds that help with the symptoms of withdrawal make you really groggy: muscle relaxers (cramping), Clonidine (thank god for Clonidine - but I challenge anyone to stay awake on two of those - for the anxiety) Benedryl (for the nasal congestion and overall ick), Zofran (for the barfing), Zantac (for the excess stomach acid and heartburn), Immodium (if you don't know what this is for, I feel badly for you because you've had some embarrassing situations).

Last night, right before Bryon carried me to bed, AFTER I fell asleep whimpering. He got me to eat a handful of buttered noodles, but halfway through I tore my clothes off, right in the middle of the living because I was both, burning up, and feeling like the fabric of my clothes was tearing at my skin. Then, I put them back on because I was cold. I finally fell asleep like this, huddled in a ball to stop the cramping in my muscles. I am so sleepy because a lot of the meds that help with the symptoms of withdrawal make you really groggy: muscle relaxers (cramping), Clonidine (thank god for Clonidine - but I challenge anyone to stay awake on two of those - for the anxiety) Benedryl (for the nasal congestion and overall ick), Zofran (for the barfing), Zantac (for the excess stomach acid and heartburn), Immodium (if you don't know what this is for, I feel badly for you because you've had some embarrassing situations).

Still, if you want to see me do something? Tell me I can’t. I’ll let you know in twelve days how I did. I can promise you that I’ll have made it. As much as I hope this is the last time that I ever have to go through withdrawal, I am sure that with my stupid brain and skull, it is likely that it won’t be.

Worst Mom In the World: Me

Yesterday, Collin had his (hopefully?) first head and thoracic spine MRI. For those of you who don’t have MRIs of your brain bits every day, the thoracic spine is the upper bit of your spine, the cervical spine is the middle bit, and the lumbar spine is the lower bit. To look at the shape of the skull, and to diagnose what might be going on with headaches, there’s no reason to look at the full spine, just the cervical spine. In other words, they are looking for Chiari.

His MRI was in Santa Monica, at the same hospital that my surgery was at, in June. I made Bryon take the morning off of work, despite the fact that he has a team of people who have travelled out to meet with him all week. I couldn’t do the drive alone, and I couldn’t sit in a waiting room alone while my boy was in an MRI tube, being tested for something I gave to him. I just couldn’t.

Every time Collin complains of a headache, or symptom, I’ve sloughed it off as nothing. Half of me did it because I was afraid, and half of me did it because I was afraid that he was subconsciously picking up on me, and was imitating me. Even when the headaches have knocked him flat, which is happening with increasing regularity, I taught my mind to lock the fear away. I’ve held him in my lap, stroked his hair, and convinced myself that it’s not happening.

But, I know that it’s happening now. The MRI made it real. There’s no way to pretend that he’s not sick. The absences from school are adding up. The calls from the school nurse are piling on. The number of times he goes to sleep with ice packs around his head are increasing. He can barely raise his voice without triggering a headache, which means he gets them all the time, because with autism, let’s face it, he yells a lot. And, he seems to get them from running, jumping, or other physical activities associated with being a kid.

If and when the diagnosis is made, I’ll have two choices: face it head-on by digging in and helping my son. Or, I can wallow in self-pity, worry and depression. Every time I try to explain to Bryon how responsible I feel for this, he tells me that genetics is a lottery, and that there’s no way to have known. I understand that, of course. But, those are just logical arguments that are clearly correct…duh. The illogical heart, which ties me to my son, tells me that I didn’t protect him.

So, I didn’t go to his MRI appointment. On Sunday night, I looked at Bryon and I said what I’d been thinking all day, which was that although I feared being an awful mother for saying it, I didn’t think I could go. I was afraid I’d start to cry, or seem nervous, making Collin nervous. I didn’t want to ruin everything, forcing them to have to reschedule because Collin wouldn’t be able to stay still. Alas, I stayed home, and felt like the worst mother who ever had a child, all because I couldn’t keep my shit together. And worst of all, I couldn’t make a baby with a perfectly formed skull.

I let them take Blue to Santa Monica, to the same hospital I had my last surgery, for the MRI. This is from a few days prior, Collin's first ride in the front seat. Look at that joy. He got to ride up front with Daddy to Santa Monica, AND have Jack in the Box on the way, so two special treats, which made the trip more bearable. I am glad I didn't face those halls, and that drive with them. But, I'm even more glad that I gave Bryon the gift of this joyous face, while riding in the front seat is still new and novel.

I let them take Blue to Santa Monica, to the same hospital I had my last surgery, for the MRI. This is from a few days prior, Collin's first ride in the front seat. Look at that joy. He got to ride up front with Daddy to Santa Monica, AND have Jack in the Box on the way, so two special treats, which made the trip more bearable. I am glad I didn't face those halls, and that drive with them. But, I'm even more glad that I gave Bryon the gift of this joyous face, while riding in the front seat is still new and novel.

Apparently, when it’s a child in an MRI machine, they let the parent go in with the kid. I didn’t know this. Bryon got to hold, and pat, Collin’s legs the entire time. I was comforted by that thought when they got home, but also immediately freaked out. Just the image of my baby’s legs peeking out from that tube made me glad that I wasn’t there. I’m glad I didn’t have to see him like that, not without answers. It’s one thing to know that the purpose of the MRI is to verify that there’s no syrinx before operating, or to check for progress of X, Y, or Z, post-op. It’s quite another to check for what’s wrong, to make sure that your child doesn’t need brain surgery. As strange and grim as it sounds, when you already know what’s wrong, it’s easier. Better the devil you know, then the devil you don’t, right? 

When Collin was an infant, he had to have a series of gastro-intestinal tests done. One of them was an X-Ray series of his belly. They strapped him to a stiff board, and rolled him over and over onto a table. He looked like an accident victim, strapped to a stabilization board. The image of my helpless baby, hysterically crying for his mother, terrified, cold and alone has stuck with me. I was afraid for him then; and, I’m afraid for him now.

I agonized over not going with them. I felt like I couldn’t have been a worse mother. I felt selfish. I put my own fear of his diagnosis, of my heartbreak, above his need for me. Bryon convinced me that it would be counter-productive for me to be there, and he was probably right. I could’ve held it together; but, Collin is tied to me like my own breathing, like my own heartbeat. He’d have known that I was upset, even if I’d been smiling. I can promise that this is the only thing I’ll miss. I just couldn’t bear the unknown again, not with my own son.

A very special present, from a very special boy. He bought this for me, with his own money. He sacrificed a treat for himself, to get me a gift, because he saw that a penguin was available in the school store, and he knew I like penguins. My boy, as challenging as he can be, is the sweetest, most generous person I know and I am grateful to know him, every day of his life, even if there's Gatorade behind this little dude, being given to him in hopes of stemming a headache.

A very special present, from a very special boy. He bought this for me, with his own money. He sacrificed a treat for himself, to get me a gift, because he saw that a penguin was available in the school store, and he knew I like penguins. My boy, as challenging as he can be, is the sweetest, most generous person I know and I am grateful to know him, every day of his life, even if there's Gatorade behind this little dude, being given to him in hopes of stemming a headache.

As I spiral, Bryon reminds me that we can only take this one step at a time. It’s the MRI right now. Then, in a few days, we’ll swing by UCLA to pick up the report and the disc, so we can scrutinize the images, attempt to self-diagnose and know nothing further than best guesses and random questions that mean nothing. Then, we’ll call the neurologist for a follow up. If he says Chiari, regardless of what words come out of his mouth next, we’ll be scheduling some second, third and fiftieth opinions with surgeons that we know already. Step, by step, by step.

I’m his mother; more than that, I’m his Chiarian mother. I’ve got plans and alternative plans, and alternative plans to alternative plans. I’ve got contingent plan B’s and C’s. Right now, all we have is questions with no answers. I just wish the question had never been asked.

Trench Time

I've been MIA for a while. I know. It’s been really rough around here. Beyond rough. It’s been some time in the trenches, to be sure. So, here’s my stream-of-consciousness update. More to come when I can organize my thoughts better on a single topic. I just wanted to give a little bit of a “here’s what’s up!”

You’ve heard of the homework wars, yes? All parents have them. Collin considers it his personal challenge to out-homework-war all other children on the globe. He wants to win the award for most tantrums, loudest tantrums, and ultimately, defeating his parents.

One of the hallmark symptoms of Collin’s autism is a complete and total intolerance for frustration, and an inability to see a big picture. So, if he has, for example, thirty minutes of homework, he is instantly frustrated by the fact that he has any homework at all, and can’t imagine a future beyond those thirty minutes. In other words, in his mind, there is no end to his thirty minutes of homework, literally. In his autistic mind, he lives in that moment, forever.

Commence meltdown.

Collin’s shortest meltdown has been 30-45 minutes long. He’s not had less than three meltdowns a day in over a month. Most days, he melts down from the minute he gets home, until about 9 or 10 p.m. Full on, complete, total meltdown. Screaming, shrieking, throwing things. Hitting. Kicking. Hysterics. It never stops.

And.

It’s.

Exhausting.

Day in. And. Day out.

Spank him. Punish him. Teach him a lesson. Take away his toys. Take away his privileges. Give him chores. Wash his mouth out with soap. He’s a spoiled brat. My kid wouldn’t act that way, that’s for damn sure. He’d learn responsibility. He’d learn that you do your work and you play later. School’s important. No kid of mine. Meltdown is liberal bullshit lingo for a spoiled brat having a tantrum.

Trust me, I’ve had enough of that lecture in my own head. I know it’s not true, but I’ll never stop hearing the shadows of other voices, voices of the kind of person I was raised to be. And, if there were an answer that simple, we’d have found it by now. Stickers, chore charts, rewards systems, penalty systems, removing his toys, punishments, you name it, we’ve tried it. It doesn’t work because he’s not being “bad.” He’s not acting this way because he’s spoiled, or because we’re bad parents. He’s acting this way because his brain works differently than ours and because we don’t have the right tools to help him yet.

Meanwhile, it’s exhausting.

So, we love. We hug. We’re patient. We listen. We support. We try. We discipline with love and kindness. But, it’s hard. In the last thirty days my nine-year-old has told me that he wishes I were dead, that he hates me, that he wishes I wasn’t his mother, and that he never wants to see me again. He’s said the same to Bryon. Minutes later, he crawls into our laps and begs forgiveness, as if it’s erased; and, to him, it is. To us, those words echo in our ears forever. I know he doesn’t mean them; but, they stick.

When I was young, I used to be forced to apologize to my mother for whatever horrible things I said to her. I'd have to give her a hug and apologize. I remember never, not once, meaning it, and feeling a sense of horrendous nausea well up in my stomach when I had to apologize. Collin always crawls up to our laps, and says how sick he feels and how afraid he is to lose his best friends because he accidentally hurt us. I am always struck by that contrast.

So, we’re fighting tooth and nail to get through the tangled web of Tricare to get him set up with the right therapists and the right home therapy. It’s been a battle. He had six weeks of home evaluation to get set up for therapy this summer. Then, suddenly, they announced that there weren’t enough therapists in our area to cover his care, and our evaluation was useless; so, they referred us to a new provider. The provider they referred us to sounds like they suck; they violated HIPAA privacy regarding several of their other patients while on the phone with us, which makes me uncomfortable putting my son with any of their providers. But, what if they are the only ones with providers in the area? Agggghh! The stress. The stress. The stress.

And finally, Collin needs an MRI because he’s been complaining, increasingly, of Chiari-type headaches.

Oh yeah. That.

I pretended that it wasn’t a thing, for about a year. I didn’t want to put my shit on my son, when it first started. So, when he started complaining about headaches, I ignored him completely. I assumed he was just copying me, literally, and didn’t pay any mind. But, he started complaining at specific times that coincide with Chiari symptoms, such as after he ran, or specifically, after he cried. And, his headaches were very short in duration (which is very common for a kid), but very intense.

After about six months, I finally asked the pediatrician and he referred us to a pediatric neurologist, based on my history. A two-and-a-half-hour exam revealed some symptoms that I didn’t even know Collin had, which were more alarming. For example, he gets ringing in his ears when he stands, and a headache and vision loss when he has a bowel movement. He thought these things were normal because they “always” happened.

Oh my sweet boy, I’m so sorry. I’m so, so sorry. Forgive me. If only I’d known.

So, now we wait.

We wait for Tricare to approve the MRI. We wait for the results. We wait and we see. If it’s positive for Chiari…we…I can’t even finish that sentence.

So, we agonize.

Meanwhile, life trudges on. I am having lots of nightmares about brain surgery, my insane family coming and stealing my son, and about death. My incidents of night terrors have increased, which is always fun, and I’ve been having more panic attacks, which everyone loves.

Overall though, life is improving. My pain is getting better, in general. I’ve made a pretty decent commitment to painting, making a solid effort at doing it every day, even when it’s terrible. I’ve been journaling a lot. I’ve been seeing my therapist and making it to all my doctor’s appointments on my own. I’ve been keeping up with reading library books, which sounds like a silly thing to brag about as an accomplishment, but with my memory issues, it’s quite a feather in my cap. I’m volunteering at Collin’s school, too. And, I’m still making some money freelancing, and planning to teach an online course in the fall.

I still have a lot to say and get off my chest about what’s going on with Collin, but every time I try to organize something of coherence, it’s not…quite…there yet. So, I’m sure, with time, it’ll come.  ,

Life and Chronic Illness

It’s not a secret that chronic illness changes your life, that it changes you. What is mysterious to people is the specifics of just how that happens, and just what changes. For all the talk about Chiari, in my life, and all the “awareness,” there’s still a lot of confusion about what it means to be sick, how it has changed every aspect of our lives.

Fear

Our lives are ruled by fear. We know that, at any time, I can get sick. I can get a headache that might send me to the hospital. I can get knocked down, and crippled by pain. When this happens, it doesn’t matter what’s already on the schedule, what’s been planed for months; I can’t do it. There is no, “but it’s important, so can’t you pull together for just a few minutes.” No, I can’t; it’s not possible. I can’t even use the bathroom alone, when a Chiari headache strikes. So, no matter how badly I want to go to my son’s school play, my husband’s promotion ceremony, or even sit at the dinner table, I can’t.

This means that I miss stuff. It also means I miss things, preemptively. We have a relatively exciting family event coming up, and I’m not going. I’m not going because we’re afraid. We’re afraid that I’ll get sick and ruin everything. We’re afraid that I’ll get sick and draw attention away from, what should be, a joyous time. We’re afraid that, to avoid getting sick, too much attention would have to be paid to accommodating me: I need a nap, a rest, a snack. We’re afraid that the stress of being afraid of getting sick, will make it happen: a self-fulfilling prophecy.

What’s more, we’re afraid of being afraid. We’re afraid of the inevitable judgment that comes from family (or friends), when I’m sick, again. Ugh. Rachel. Again. I’d be annoyed with me too. But, we’re also afraid of the judgment that comes from protecting ourselves from such dilemmas. Ugh. She stayed home? She’s missing this?

We can’t win for losing, can we?  

We

Notice that all of that fear was a “we” problem. Chronic illness isn’t just me. I’m the sick one, but Bryon is the one who cares for me. Collin misses out on promised trips to museums, or parks; and, he misses his mother, when she can’t be there. It’s a “we” problem, to have a chronically sick person, in the family.

That means that “we” make decisions about how to best care for “me.” I don’t expect the world to stop when I’m in a flare; but, I do have to stop, even though I don’t want to. We have learned how to keep the world turning around me, while simultaneously caring for me. We’ve learned that part of that means protecting me from harm, and keeping me safe from flares, even if our decisions are not always popular. We’ve learned that “we” are more important than “they,” because the “me” in this equation is pretty important to the three of us.

My "we."

My "we."

Sick and Well

I look great, lately, if I do say so myself. I’m up and dressed, everyday. I can exercise most days. I paint. I write. I’m even making a decent living, right now, as a freelancer. I do things. If you didn’t know that I was sick, you would think I was a regular, healthy person. This is confusing for people. I look fine, right?

I am fine, for now. I’m also only fine, in comparison to not being dead, or not being in the hospital. I’m not fine. I can give you a laundry list of things I can no longer do, either because I’m not allowed to, or because I just can’t. I almost passed out last night, because I’d been lying on the couch with my head a little below my heart. Thanks to weird CSF, and blood-flow in Chiari brains, I crumpled like a leaf, in Bryon’s arms, on our way to bed.

No matter how fine I ever look, or become, or heal-to-be, I’ll always be a more fragile version of myself. I’ll always have to make decisions that appropriately protect my easily-broken body. It’s like going on a hike, and choosing your steps carefully, so you don’t fall. My life is a constant battle of choosing carefully, so that I remain in a steady state of fine, and hopefully, better.

It’s very easy to see a chronically ill person, out and about, doing well, and then question why they can’t do activity X, Y or X, when asked. Trust them. They know their limits. The worst thing you can do to a sick person is question that they are sick, and then make them apologize for living when they are well.

I "helped" clean out the garage yesterday. See, I'm "well." I sat in a lawn chair and talked to Bryon, while he did ALL the work. Rachel of five years ago would've cleaned out the garage herself, or been in the thick of it too. No longer.

I "helped" clean out the garage yesterday. See, I'm "well." I sat in a lawn chair and talked to Bryon, while he did ALL the work. Rachel of five years ago would've cleaned out the garage herself, or been in the thick of it too. No longer.

We’ve been dealing with a lot of unnecessary family drama, lately. It made me ask Collin, this morning, if he could change one thing about me, what would it be; he said: I’d make your brain better. I didn’t choose to be sick. If I could erase it tomorrow, I would, despite all the life-lessons that Chiari has given me. But, because my boy thought only to say that he’d fix my brain, I think that I’m doing okay on everything else. The “we,” is strong in our family, and I’m happy that I have it to support the “me.”  

Be in Love With Who You Are...

I have been making a decent supplemental income as a freelance writer, lately; and, I was writing an article on this viral post last night. I thought it was ugh, for so many reasons (check out my thesis below, if you are interested). Anyway, to write the article, I scrolled through several hundred of the top thousand or few comments on the original post. Writing articles that get picked up for a paycheck takes some actual research. Usually, comment threads on public posts are full of idiotic nonsense; but, I found a hidden gem, yesterday.

The post in question was filled with pretty foul language. Meh, who cares? At least, to me. I didn’t really notice that so much. I swear all the time. Remember this? But, someone made a comment about how it seems so inappropriate that this is how husbands and wives talk to each other these days, and how it’s basically shameful and disrespectful to both of them. It’s not that sanctimonious comment that I cared about; it’s the response that has stuck with me. Someone responded to the commenter that it doesn’t matter how a couple communicates with each other, so long as they are okay with it. She said she lives by a little aphorism that she heard a long time ago:

Be in love with who you are, not who others think you should be.

That resonated with me, and has really stuck in my head. Bryon and I are best friends, as I’m sure most husbands and wives are. At least, I hope most husbands and wives are. We aren’t just best friends in a greeting card slogan way; we’re really best friends. There’s no one else in the world who I confide my secrets in, who I want comfort from when I have a bad day, or who I laugh with, quite as much. But, that means that we have our relationship, our way. We are silly and sarcastic. We joke and tease.

For example, every time Bryon tries to talk about physics, I pretend to fall asleep; and, every time I try to watch more than one episode of Golden Girls before bed, he puts on his GG appreciation device (earplugs and eye patches). We are gloriously happy with the way our marriage is. I wouldn’t change a thing, really.

However, we’ve come across people who think that we should change how we behave, outwardly, or who are uncomfortable with the way that we communicate. They don’t like when we tease, or the way that we joke with one another most of the time. They don’t like that we laugh at self-depreciating humor, or humor at one another’s expense. Frankly, I think it’s nice to laugh in your marriage. We used to try to change who we were to accommodate others’ discomfort for teasing or joking; but, it’s really hard to change your communication style for a few hours at a time, just to abate others’ discomfort. Have you ever seen a couple trying to pretend they are different people; it’s soooo awkward. We look like we’re acting like Mr. and Mrs. Stepford, at least to us.

We’ve been married almost eleven years now. It’s time to stop that nonsense, right? Clearly, neither one of us is unhappy with the way things are going, and I think that after all this time, if we were having communication issues, it’d have become clear by now. Okay, we do have trouble communicating about whether or not he should take out the trash more often; he should. And, we have trouble communicating about whether or not I should continue to purchase copious amounts of whatever I want, at the moment; I should. It isn’t like we’re bickering, or screaming, or having fights in front of neighbors; we’re laughing together. And, our teasing doesn’t include calling each other names like:

Even if it did, meh. These people don’t seem to be too happy, but maybe they are? If they are, it’s no one’s business how they communicate with each other. The problem with their communication style, the reason it makes others uncomfortable, is that it violates social norms, and conventions. Bryon and I don’t violate social convention in our communication style; I can assure you of that.

When I saw that aphorism, it really stuck with me, that we are in love with the way we are. We send emails back and forth all day, filled with jokes and teasing that others wouldn’t get, because we are silly and dorky; and we probably call each other idiot a lot, but don’t really mean it. We also have, “I love you” sprinkled in there about a million times, not just at the end, like it might as well be a signature block that no one bothers to read.

When you are communicating all day with someone, just because you miss them, I think that means you kind of like the person, even if you call them a poopy-head. Bryon’s job makes him impossible to reach by phone anymore; so he gets a zillion and one emails, just to tell him things like, “my lunch was too salty, how about yours?” and I get ones that say things like, “my phone annoyed me.”  I also get a “wake-up” e-mail every morning from him, because he leaves the house so early now, that the first thing he does, when he gets to work, is send me an email, to tell me to have a great day. It’s kind of lovely to be greeted with an absentee good-morning.

When I started to get really sick, Bryon was the thing that saved me, really saved me. I will never, in my live, be able to express how thankful I’ve been to him, for all the nights he stayed up, watching me to make sure I didn’t die. I will never be able to thank him for carrying me to the bathroom, for washing me when I couldn’t wash myself, for sleeping next to hospital beds, and for taking down my last words, the nights I was afraid, truly afraid, that I wouldn’t see the morning.

So yeah, we are in love with the way we are. When I saw the phrase last night, I read it to him over the phone, and we were talking about it. He said, that he’d never change a thing. No one who’s happy should. Marriages, or any relationship that works, are complex organisms, and after a while, you’ve got to find the groove that makes it work for you. Once you do, who the hell cares what anyone else thinks anymore?


I felt it was icky for so many reasons. The first of which was the dad who seemed to have never met his kids. I’ve not seen a dad these days who has never once put his kids to bed, fixed a breakfast, lunch or dinner, or poured them a damn cup of juice. Then, at the end, she claims that her husband made her get rid of all the sippy cups. WTF? He’s never been home, or made a single parenting decision, but he makes proclamations about what kinds of cups the kids are allowed to use? Then, we have the fact that these kids are total jerks. I don’t judge others’ parenting, except silently, of course; but, if your kids are this bad, someone should remind you that you will, one day, be inflicting massive asshole adults onto the world. Please don’t do that. And finally, we are having a problem that no one is talking about these days, with “mommy juice;” she’s leaving with her victory bottles of wine, flung in the air like a champ. Sure, she’s probably not an alcoholic; but, the joke of “mommy likes to drink” isn’t funny anymore, and I’m not sure that it ever was. Wine sales have skyrocketed in recent years, right alongside alcoholism rates in middle-aged women. I don’t get the fact that, for some reason, the fact that mommy drinking every day, to deal with being a mom, is a joke.

Yeah, yeah, I can take a joke just like everyone else; and I get that most of the ideas in this post were jokes, exaggerated, to make a point; I’m not an idiot. But, my point was that when we ignore the issues above, and pretend that they are funny, we are taking huge steps backward in what we have rallied against, as modern parents (and people), to change. We want dads involved in childcare! You’ve got it! We want kids to be good, polite, non-self-indulged! You’ve got it! We want to treat addiction like the serious mental health issue that it is! You’ve got it! Whoopise! Haha! I’m not saying there weren’t hilarious parts of this post; there were. There were lots of parts that cracked me up; but overall, it was backward humor that was just…stupid.

--when the article goes live, I'll let you know, and put a link for you :)

 

Ten Things I Miss

As I go through my usual days now, I’m often met with the idea of “I miss when I used to…” and fill in the blanks. Like, I miss that I used to be able to blow-dry my hair easily; and now, I rarely do, because the nerve pain in my scalp makes it way too uncomfortable. There are a lot of things that being sick changes in your life, and most of them you adapt to, without even realizing it; they just become part of the new you. And then, suddenly, one day, it creeps up on you, that your whole life is different.

That’s what being chronically ill is about. There are, literally, countless changes to my life. Some of them are good: I get to be home with Collin. Some of them suck: I lost connection with a career I loved. But, the important part is being able to accept and work around the changes as they come; because if one thing is for sure about chronic illness, is that it doesn’t ever stay the same.

Chiari, for example, doesn’t ever stop changing or evolving. Something people don’t generally recognize is that all the time that I spent undiagnosed, was time that my cerebellum was sitting outside my skull. That’s time that my spine and the back of my brain were being crushed by the pressure of being squeezed out of the teensy-weensy space of the hole in the back of my skull. That causes permanent nerve damage, the effects of which we can already see, and which will only continue to develop over the rest of my life.

Plus, my neck muscles were sliced through, all the way, and spread apart like a curtain, at the base of my head, twice. This means that my head, which is very heavy (didn’t we all learn, in the 90’s what the human head weighs?),

 

…is often unsupportable by those, severely weakened, muscles. If I sleep wrong, if I’m tired; or, even if I just had a rough day, I have to wear a hard cervical collar, for the rest of my life. It’s akin to having had a broken neck. These aren’t minor things. These aren’t, “oh, you had your surgeries, so you are better, now right?” things.

I was looking over the last few posts and it occurred to me that I was missing the point of what I’d wanted to do with my blog. One of the goals was that I wanted to educate what it’s like living with chronic illness. At first, it was about being sick, and how it hurt to be bullied because of it, and with it. But then, it got to be about nonsense. I was hurt by some mean girls. So what? It’s like wild kingdom, right? The different girl might as well be the gazelle that gets picked off by the whispering, back-biting girl lions. But, who cares? I didn’t die. I hobbled off and lived to say, “fuck you; you didn’t kill me.” And, it bugged the shit out of the lions. So, enough said. Leave it be. I missed my purpose by letting them bother me more, and letting them continue to pick at the gazelle, who wasn’t a carcass.   

So, I’m going back to my purposes: educating and looking into life of chronic illness! Last night, while I was up, at 2 am, sitting on the pot, for FORTY minutes, I got to thinking about this list:

 

Top Ten Things I Miss About Healthy Rachel

 

Being Able to Pee

That had to be number one, right?  After lots of testing, and still more to come, we are pretty sure that my pee issues are nerve-damage related. By the way, I’m very much looking forward to a scope going up my bladder; I hear it’s really fun. Is it? I love my urologist because he’s the perfect mix of good doctor and silly goose. I like the silly goose part. The last time I was there, he said to me,

 

“Imagine your bladder is like a little child; it’s having baby tantrums.”

 

Then, he balled up his fists and made waah-waah faces. So, the bundle of nerves at the base of the cerebellum control a lot, including bladder function. It could be worse; I could be incontinent. Instead, despite having to go really, really badly sometimes, it can take me 30-40 minutes to convince my muscles to get in line and let it happen. You’ve never seen anything until you’ve seen a grown woman jumping up and down, on the toilet, trying to convince her body to release the pee!

Grr. Hulk. No. Cry. No. Happy.

I can’t always easily regulate my emotions anymore. Symptoms associated with chronic illness include depression, or mood swings. It’s pretty normal to be depressed about your whole life changing, without your permission. But, more than that, when someone physically alters a portion of your brain, that comes with unusual side effects too. Oh, and PTSD. I get severe anxiety seeing doctors now, and meeting new ones, for example. It’s taken me a long time to work out, and work with these changes. I love my therapist. She’s the bee’s knees, and without her, I don’t know how I’d have figured out a lot of things, and made some pretty sweeping changes to my life.

People don’t totally understand things like this; and it’s very difficult for people not close to you to understand; and it’s easy for them to rush to judgment. Oh, she’s crazy. Oh, she must need help. What do they mean by “help,” when they say that, anyway? Fuck those kinds of people, frankly. If you’re the kind of person who tells a brain surgery patient that she’s crazy because she’s having a bad day dealing with her ongoing health issues, which include mental status changes, then you are probably the one who needs help; and you are a meanie.

Let's say this as CLEARLY AS POSSIBLE: Brain surgery is a type of TRAUMATIC BRAIN INJURY.  This is not just an appendectomy; it takes YEARS to recover from. I’ve had two, in a single year. If you met a soldier, hit by an IED, and he was a little teary-eyed one day, and then a little bit easily frustrated the next, would you push him around and say, “ugh, he needs help!” Umm, no. Because he has a traumatic brain injury. Same diff, folks. Same diff. Let’s get that right on the table, and stop being nasty to people with traumatic brain injuries; let’s recognize that it FUCKS with your mind.

Sneezing

Well, I still sneeze. Everyone sneezes. Imagine if someone claimed never having sneezed. It sounds weird; but, my grandma claims that she’s never, once in her life, had a single headache. How that’s possible with having had five children I’ll never know! I know that some ladies pee when they sneeze, especially after they’ve had children; maybe I should look into that and then I could pee more easily. But, sneezing is a Valsalva Maneuver. Normal people use a Valsalva Maneuver to equalize pressure in their ears. People with intracranial pressure issues can’t perform Valsalva Maneuvers without extreme pain. When I sneeze, I don’t get that, “oooh, that felt good,” sensation that everyone else gets. I get that, “shit, how did I survive that,” feeling. So, my sneezes sound like this: “aa-choo-aaaaaaoooooowww!”

 

 

Bending Down

This one shouldn’t bother me, so much. I guess a lot of middle-aged women don’t bend at the waist, especially based on the obesity rate in America! But, I used to be fully capable of bending. I still am, but it hurts. Blood and cerebral spinal fluid flows around a Chiarian’s brain and skull a little differently than around in a normal head; so, if I bend down, “timberrrrrr!”

 

Not Knowing About Passing Out

Did you ever wish you didn’t know something? There’s lots of things I wish I didn’t know, or wish I could unsee

 

Don't you wish you could unsee this? I know I do. Illma Gore made this "awesome" painting, and since had to hide from numerous death threats for giving him a (probably accurate?) micropenis.

Don't you wish you could unsee this? I know I do. Illma Gore made this "awesome" painting, and since had to hide from numerous death threats for giving him a (probably accurate?) micropenis.

I wish I didn’t know what it felt like to pass out. It happens occasionally, because of Chiari. It’s one of those things. It’s better to go along, blissfully unware, I think. It’s not the passing out that’s the bad part, really; it’s the waking up, and seeing that you scared the people around you.

 

Speaking of Knowledge – Mortality

I think everyone has a vague sense of their own mortality. We all know we’ll die. We all know that we won’t live forever. But, there’s a big chasm between that knowledge, and the sense of clarity you get when you are being wheeled back for someone to touch your brain. The first time, I wasn’t afraid, not until two minutes beforehand, when suddenly it occurred to me that how would Bryon really know that I loved him the way I meant to express it. What if I died? I kept shouting to him, all the way down the hall, until they knocked me out, right there, because I was hysterical. There’s a kind of terror in that feeling that can’t be expressed in words, a horror in knowing not that you might die, but that there’s no true way to make sure your loved ones know you love them. We use all that greeting card bullshit to say that telling them, and showing them works; but, when you are there, facing it for real, you suddenly realize that your heart is deeper and more full than you’d ever known. There’s no way to ever fully express what’s in it; and that’s the most horrifying part of mortality.

 

Lifting Anything Heavier than Homer

Technically, I’m not supposed to lift anything heavier than five pounds still; Homer weighs close to fifteen pounds. Some Chiari patients take the “restriction” idea way too far, and believe they should treat their body as if it's made of glass. Surrounded by pillows. In an acrylic, protective case. On the no-touch shelf.  I think it’s safe to say that some Chiarians are a little too skittish. Sure, I can’t ride roller coasters, or go to the chiropractor, mostly because I could become internally decapitated far more easily than you; but the thing that bothers me right now is that I may not ever be able to lift weights again. Any strain, even just a big bowel movement, can cause my cerebellum to herniate back out of my skull. Because I have a titanium plate, I can strain a liiiittle more than some others, but not much. I love weightlifting; I love it so much I wasn’t even a little embarrassed the last time I got a PR at the gym, and a little fart escaped. Them’s the breaks when you are working hard. Okay. I was a little embarrassed. But we all fart, right?

My Hair

I want to wake up tomorrow, and have it all be back. I know I should just feel lucky that it’s hardly noticeable; but, I don’t feel lucky. I feel mad. In most cases, my hair just looks thinner than it normally would; but, if I pull it up in a bun, there’s the bald spot, or the scar. I want my hair. I want it now. To claim that hair isn’t an integral part of our identity is to lie. Look at all the cancer patients who shave their heads defiantly in advance of chemo. Shannen Doherty just made the news for doing it. There’s nothing like looking at yourself in the mirror, and seeing such a drastic change that you didn’t perpetrate yourself.

Sleeping

I still sleep. But, I am still on a lot of sedating meds, so the sleep I get isn’t always restful and restorative. I miss that. I miss waking up refreshed, instead of still exhausted, because I’m still a little sedated. You know how when you wake up, you stretch, yawn, and feel ready for the day? I wake up, stretch, yawn, and want to sleep for another twelve hours. Literally.

Not Knowing that Vile People Exist

I’m sure you think this is going back to bully, icky people. It could, but it isn’t. I have been working on a side project for a long time, a book. So, I spend a lot of time observing online Chiari support groups. I wish I didn’t know what happened in online groups, and how bad they are, in general. I’ve seen death threats, and a man driven to suicide because of online taunts. I’ve seen women tease a mentally ill man into running away from home, only to be found by police, weeks later, then claim innocence. I’ve seen sick children lose access to mere pennies of fundraising monies because people harass their GoFundMe site with enough comments to shut them down. I’ve seen brutality that would make your head spin. It’s enough to make you question your faith in humanity. I wish I didn’t know this. I wish I could pretend that I believe, fundamentally, that all people are good; but, it’s too late for that now. I have to know that there are some bad people out there. Truly bad. And, the worst part of all, is they think they are good people; or, they pretend they are good people, especially to themselves.


Being sick is not like a hat that I can take off. It’s a part of who I am now, like being a mom, or being a wife. But, it’s also not something that I like to make the center of my day. I try to arrange my life so it’s not a priority, so it doesn’t interfere. Usually, it’s not a “thing;” but sometimes it pops up and is a pain in the ass. If you spend time around me, I’m not talking about Chiari, ever, unless I’m asked. I’m not one of those people who never shuts up about it. Ugh. The horror. Actually, I think it might be worse to be one of those people who never shuts up about her kid.

 

Bonus

I miss having just one doctor. Or no doctors at all, really. Remember when you went to the doctor because you had a sore throat, or a fever? Or, rode those things out? I have a dozen. In LA, I have over a dozen, that I need to see on a regular basis to manage my condition. There’s MRIs to update, images to review, bloodwork to check, medications to manage. It’s a constant battle of appointments and calendars! Think it through, and count how many doctors you have. I bet it’s less than a dozen.  

 

Sickie-Pie Cutie-Pie and The Satanic Temple

I don't generally, okay ever, post more than once a day. But, I have two reasons: one, I couldn't wait to show you this adorable picture and video and picture of my son; and someone else had something very important to say.

I don’t get to snuggle with my son much. There’s lots of reasons for that. Namely, he’s autistic, and he snuggles on his terms, when he wants to, how he wants to. Plus, he’s a busy, bustling boy. He’s sick right now, so I’m getting all the snuggles a mommy could want.

Let’s just say it’s been awesome. I always feel a little guilty, relishing in the gift that his illness gives me. The world turns and punishes me for my glee anyway; because a few days later, I’m sick too, obviously! The price of love, and motherhood.

I just thought the world of Rachel’s blog needed a drop of this, since there was too muck blaaaah lately.

This is my favorite part of the snuggles from today. He wanted to demonstrate how sick he sounded, by sending a video to Daddy; but I couldn’t stop laughing at how pathetic he sounded. Mostly, I couldn't stop laughing because the voice was 90% put on. This is one of nine, nearly identical videos. Want to see them ALL?

And now, in the name of fairness, despite the fact that I said I didn't want to talk about this anymore; I needed to let you know that the bully “reached out,” and gave me her side of the story. I debated not letting anyone know, because of the aforementioned ban on her presence; but, it’s not fair not to tell you that she did have something to say. I mean, you’ve heard my side forever. She deserves a voice too, right?

She claimed (doubtfully) that she never knew I was sick because she’d stopped being my friend because I’m not a Christian. And, by the time she knew I was sick, it was too hard to cook; plus she's too busy, so she she prayed. Apparently, she has time to read the same post, over 150 times in less than a day; but not to send a card, or a make a phone call. Frankly, if someone's heart needs to reach that far to find that weak of an excuse, I'm not mad anymore. I'm sad for them; it's like being angry at someone who's mentally handicapped.

So, take that as you will. I always get confused about Christians who discriminate against non-Christians, because it seems like the epitome of being, I don’t know, un-Christian, but who am I to judge? I think they’ll meet their maker about that one, one day. In fact, I sincerely hope they do. Because that’s one of those biggies, one of those commandment deal-io’s right? I think it’s “Love thy neighbor.” Yeah, I think I heard that somewhere before.


By the way, I'm not a Christian. Everyone who knows me knows that. This is not a newsflash. Sometimes, when people discover this, they flee, as if I will be able to spontaneously burst them into flames, with my mind, because I'm an atheist. I choose not to believe in God, but I'm generally not aggressive about it, because I think religion belongs in your heart, and your home. That's it. I pretty much try to only bring it up, when I see it interfering with public policy, education, or when I see that Christian ideology tries to interfere with everyone else. Because Christians are the majority religion in America, they tend not to notice just how pervasive their "stuff," is; they are everywhere, on everything, and it's a bit oppressive, to people who either don't believe, or don't believe the same way.

As an aside, take a gander at the Seven Tenets of the Satanic Temple (calm your shit people, the Satanic Temple doesn't worship Satan - That's the Church of Satan). The Satanic Temple doesn't "worship" anyone, or anything. In fact:

The Satanic Temple holds to the basic premise that undue suffering is bad, and that which reduces suffering is good. We do not believe in symbolic “evil.” We embrace blasphemy as a legitimate expression of personal independence from counter-productive traditional norms.

In essence, they use "Satan," to piss of Christians, and get attention. Basically, it's the same thing as PETA throwing blood on fur; it gets the most attention for their cause; which is pointing out (loudly) when Christians push the God thing just a liiiiiitttle too far. But, is there a single thing wrong with living by rules like these? I'm not a member of this group, but I like their thoughts here! 

  • One should strive to act with compassion and empathy towards all creatures in accordance with reason.

I love this, especially the creatures part. Bleeding heart vegetarians like being nice to creatures too. What can I say?

  • The struggle for justice is an ongoing and necessary pursuit that should prevail over laws and institutions.

This really inspires a lot of introspection and thought, and forces us to constantly evaluate the role of government, and how much power we give to any single body. It's actually a pretty deep thought.

  • One’s body is inviolable, subject to one’s own will alone.

Um, who can argue with that?

  • The freedoms of others should be respected, including the freedom to offend. To willfully and unjustly encroach upon the freedoms of another is to forgo your own.

Show any conservative a video of a burning flag, and they lose their minds; but, I'm pretty okay with it. I don't like it; I won't do it, but I respect their right to do it. To me, that's what this is getting at.

  • Beliefs should conform to our best scientific understanding of the world. We should take care never to distort scientific facts to fit our beliefs.

I know that a lot of people visiting the Ark Experience would have a problem with this one. How old is the earth?

  • People are fallible. If we make a mistake, we should do our best to rectify it and resolve any harm that may have been caused.

Who could have a problem with this? Oh, I know! I know! Pick me! Pick me! But also, Donald Trump. It must suck to be in the same category with that guy.

  • Every tenet is a guiding principle designed to inspire nobility in action and thought. The spirit of compassion, wisdom, and justice should always prevail over the written or spoken word

Again, what's wrong with this idea?

I just wanted to put this out there as an "idea" that was different than the norm. Something that was about being nice to other people, about being open and understanding, and about peace. And, an idea that says it's okay to be different and still be accepted. This is the same basic idea as what's happened recently; it's David and Goliath, in essence. It's pushing back, loudly, when you're being pushed around, and doing it in a way that doesn't say, "mew," but says "roar." 


P.S. I need a haircut! I always get a little skeeved out when I see pictures of myself, in such a public place, especially when I'm like "ew!" But, I promised myself that I'd be real when I started this, and that's as real as it gets: a lady who has needed a haircut for like, four months, but hasn't gone because the nerve pain in my scalp hurts when they touch it with the little comb. Plus, I get weird when they see my shaved head and start asking questions. How good of a job do you think I could do by myself?

Moving On

I can’t figure out what to write about, right now. I have, literally, a dozen half-started posts. They are all dull, boring, and about negative things. They are about negative things because, last week, was a depression week. I’ve mentioned the darkness before; and how usually, when I’m in the dark spot, I don’t write. I don’t write, when I'm in the dark spot, because when I do, it’s blaaaaah. Now, I still write, but I generally don’t write anything to publish.

It’s important to talk about depression as part of chronic illness, even as part of life. But, for people who are sick, like me, it’s a genuine part of our illness. Someone touched my brain. Not to mention the fact that my life, thanks to this bitch called Chiari, is forever changed. So, when I get sad, or down, it’s not a matter of knocking it off, or cheering up. I have a chemical imbalance, that is genuinely difficult to overcome. It’s not something to be ashamed of, and it sucks.

It makes everyday life much more difficult to deal with, when it rears it's ugly head. It lies to me and tells me that I'm a bad mother, a bad wife, and bad person. It tells me that I'm fat, ugly and stupid. It tells me I'm worthless, and should just stay in bed, and to forget about bothering for the day, for the week, for the month. But, I do all the right things to try to combat it, when it rears up like a tidal wave: I continue therapy, even when I feel good; I exercise regularly; I eat right; I get dressed; I focus on my hobbies. In other words, I do.

So, last week, when the shit hit the fan, it felt a hundred times worse than it should have. It’s also why I didn’t publish a link, on my FB page, to the last post. See, what last night’s post was for an audience of one, so I didn’t bother. It was angry. I was angry. And, I know it reached it’s intended audience, because, in under 12 hours, it had been viewed almost 80 times. I’m a small-time blogger; I make no qualms, or have any disillusions about the size of my audience. If I have a post viewed 80 times between midnight and 8 am, it’s by one person, especially since I can track how many places it’s coming from. Those 80 views, were from less than 10 unique places. I know that if someone talked, directly about me, I’d be reading it a bunch of times too, getting more and more riled up.

The sad thing is, all of this can be fixed with a phone call, or a ring on the doorbell. It could’ve, been fixed much more easily a year ago; but now, it takes some doing. It sucks to be the one who’s wrong, really wrong, and know it. Hey, I’ve been there too; I was a real bitch to my sister a while back. I was wrong then. I openly admit it. I know what it’s like to be the wrong one, and not be able to admit it to myself, and then to have to, upon reflection.

It's a terrible feeling to wake up one day, and realize you've done something awful, and hurt someone. But that takes two steps: the ability and desire to reflect; and then the act of apologizing. I apologized then. It took a while for her to accept it, and me; but I’m glad she did.

I actually feel badly for people in this position, being forced to hold an indefensible position, when all you’ve got to stand on is, “but she said I was mean!” Imagine, for a moment, that it wasn't me that got sick, that it was a sister, a daughter, a best friend; would you have treated them the same? Even close? What would you have said about the person who had treated them that way?

Now, in this pitiful position, you have to dig your hole deeper and deeper and deeper, until you find peace in acceptance and self-reflection. You have to claim it’s light enough in there to see, and that you love it down there with the filth. The ladder that leads out is always there though; it’s always ready; it’s just that people refuse to see it sometimes.

It's an important part of being an adult; and more importantly, of being a woman, to be able to recognize when we've hurt one another, and then to be able to both apologize and forgive. Without these things we have lost the soft strength that makes us women, the thing that makes us unique from men, but also equal to them. If we don't keep, and hone, our ability to both know our weakness, but also care enough to forgive it in others, we are nothing more than war and anger. We must be better.


So, what do I want to write about now, to get the taste of that nastiness out of my mouth? Let’s see, how about a list of random things that happened to my family in the last week, that brought a smile to my face, despite being in a sucky, depressive state:

 

Blue Pee

Remember how I’ve been having some bladder issues? My urologist gave me some meds to try. Now, I pee Windex. Well, at least it looks like Windex. The meds don’t work, and I’ve since stopped them, and it’s been several days since I took my last dose, but my pee still looks blue. And, when I say blue, I mean blue. I had to go to Urgent Care the other day, because like so many other times before, it seemed like my bladder issues were a UTI (they weren’t), and the nurse said, “Oh my gawd, you’re a Martian!” Apparently, Martians have blue pee. Good to know. If I’m ever suspicious of someone’s earthly origins, I’ll make him pee. Quick, make Trump pee!

Daphne the Great

At the time, this was not funny, and I guess it’s not hilarious in a “I could’ve been killed,” kind-of-way; but, it’s a little funny, really. Daphne hates small dogs. She used to be cool with all dogs; we even took her, as a puppy, to the AKC classes, and she has her little certificates for “Good Citizen,” and everything. She was the biggest puppy there. Hilarity ensued.

But, hundreds of trips to dog parks, and countless small dogs who act like big dogs later, and Daphne has learned that little dogs tend to treat her like a pin-cushion for their dagger teeth. So, she’s stopped laying back and taking it.

Our neighborhood doesn’t have fences; so, if you leave a dog outside, it has to be on a tie-out. Technically, the leases state that you can’t leave them out, unattended, which we follow to the letter, because we live on pretty highly-trafficked corner, for kids and walkers.

On a walk, recently, we passed a house, where a small dog, let’s call her FiFi, was tied up, outside alone. FiFi’s tie-out, was too long, and she could reach the sidewalk. FiFi saw Daphne, and darted from the safety of her yard, to leap on Daphne's back. Picture that. Fifi, literally on Daphne's back.

This is a dog, totally unaware that she just behaved like an asshole.

This is a dog, totally unaware that she just behaved like an asshole.

Can you imagine doing such a thing, if you were a human? It’d be like, if I saw The Rock, and decided to leap on his face, clawing his eyes out. He’d pluck me off, and flick me, like a booger. Daphne did much the same thing, except FiFi, realizing her mistake, dashed back to the safety of her own yard, as if it were protected by a force field. Daphne ran after her, taking me with her; I was pulled underneath the thrashing dogs, and the ankle-biter bit me, in the ankle (shocking), in the melee.

I think that The AKC, when they see this, will come and rescind Daphne’s Good Citizen certificate, despite the fact that she was provoked. She should’ve used her words to resolve the conflict. Or, she should’ve listened, when I said, “heel.” Or, at the very least, she shouldn’t have tried to kill me too. She says she’s very sorry, indicated by deep sleep, and lots of sad-eye faces.  

Boats that Go Nowhere

Collin fixates. Autism is like that. All kids are like that, really. Anyone with a kid knows what it’s like to watch the same movie over and over again. But, parents of kids on the spectrum really know what a fixation is. Last week, Collin started making boats out of pieces of sandstone. He glued two pieces together, a flat bottom, and a “sail” vertically on top, to make a make-shift sailboat structure. I think they are adorable. I think they are less adorable, when they are glued to the following places: my entryway floor, my patio table, and my patio. I wish I’d taken pictures of these voyages, before I scraped them up.

I didn't take any pictures of Collin's boats; but, you are about to read about something gross, so look at Homer being adorable. I mean, look at him. He's precious, right?

I didn't take any pictures of Collin's boats; but, you are about to read about something gross, so look at Homer being adorable. I mean, look at him. He's precious, right?

 

Cockroaches…Cockroaches…Cockroaches!

Collin was being punished last week, pretty harshly, as a means to adjust a piss-poor attitude. As part of his punishment, he had to scrub the patio furniture. The poor kid, I actually felt pretty badly for him, because it turned out that the spigot in the backyard didn’t fit the hose; so, he had to use bucket after bucket load of water, individually, for rinsing. Then, it got worse. As soon as water touched, and seeped around the post of our back patio, the one that holds up the support beam, cockroaches started pouring out of it, scattering and skittering everywhere.

Then, as water continued to fill the ground, on the patio, as he kept scrubbing, they began pouring out of the side of the house, and out of the other beams. They were, no joke, everywhere. So, that kid was out there, scrubbing patio furniture, and actually battling, cockroaches, as they ran around his feet. I kept hearing him yelping and making "hi-ya!" noises, but nothing that sounded dangerous; so, I left him alone. Every time I checked on him he was fine, just scrubbing.

He proudly showed me the carcasses, later. Talk about a punishment! Because he’s such a rule-follower, he knew that he wasn’t supposed to come in until the furniture was clean; so, he stayed out there, with the cockroaches!

I let him out of cleaning the inside of our storage box, mostly because there were at least three, that we could see, black widows in there. But, he did a decent job on the rest. We’ve called maintenance to come spray for the roaches. We’re pretty excited to figure out a place to go, for four hours, on Thursday, with the pets. Should be fun to keep the animals away from a hamster, in a car. I’m open to suggestions.

Insanity

One of the things that has always been me, is exercise. I love it. I am a work-out-aholic. I could spend all day at the gym. So, getting sick, especially in a way that severely limits how much, and how I’m allowed to exercise, for the rest of my life, continues to be especially hard. I’m healed enough to allow things like the elliptical machine, walking, and aerobic exercise; but I’m still not allowed any weightlifting, and maybe never will be. So, I moved from the elliptical, to the Insanity series. Logical, right? Seems legit to skip twenty steps.

Let’s just say that after the first day, despite modifying for my condition, I could barely move. At all. It’s ironic how getting fit can make you hunch over, and shuffle like a ninety-year-old with arthritis. Bryon thought it was hilarious. During the video, Collin begged me to stop, and at one point, started crying, because he’d not seen me so sweaty in such a long time; he thought I was having some sort of heart-attack. I thought I looked pretty. I was merely glistening. I had to stop and remind him that sweat is normal, especially during a heatwave, and when the mean man on the video is trying to kill mommy.

However, I think I sweated for the next eight hours, straight. I was woefully unprepared to start the program. It reminded me that, while something like that would’ve been cake for me before, I am back to square one. The soreness has, since, abated, both because I’ve gotten a little stronger, and because I’ve lightened up, even more, on myself, finding that medium, of what I should be doing, at my level. It’s a tough road to travel without a real map. But, I know I’m not doing anything dangerous or risky, so that’s good.  

We’ve done a few of them together now, as a family, which is a blast. Collin is a big fan of the “high five,” which means he only does any movement at all in order to arrange to meet up, in the middle, to receive, and give, a high-five. It’s pretty adorable.


I hope that, soon, I land on some new ideas. I hope that, soon, some new stuff hits, and I have some better stuff to write about. But, this is a palate cleanser to get that nasty business out of our hair. We’re done with bitchy crap, and we’re done with bitches. Let’s move forward and forget about it. I’m feeling the clouds clearing on my dark spot, and I’m ready to go out and be me again, and I’m ready to go forward without that nonsense too. Who cares about ugliness and ugly people?

I'm so excited to move on,in so many ways. I'm taking a painting class this fall, which should be fun. And, I'm really excited to just be doing more of what I love. Hooray!

I'm so excited to move on,in so many ways. I'm taking a painting class this fall, which should be fun. And, I'm really excited to just be doing more of what I love. Hooray!