One Week Update: August 9

I know that I’ve been MIA for a week or so. I have had a couple of migraines, which I still get, despite my surgeries. Migraines are separate from Chiari, despite the fact that I get both types of headache concurrently, often. In case anyone is curious, my migraines, as a separate disorder, have been pretty well controlled lately, by the following regiment:

 

Preventative:

  • Amivog (this is one of the newer, monthly injectable medications)

  • Topamax (300 mg - yes, this is a big dose - mine is broken up into am/pm doses)

  • Botox (every 3 months following the protocol, plus in my jaw)

 

Abortive:

  • Imitrex (100 mg dose)

  • Frovatriptan (not WITH the Imitrex, duh - to every pharmacist out there who tells me, and will tell me)

  • Fiorcet (not the one with Codeine)

  • Zofran, when needed

 

As for the Amivog, it comes in two doses, a small and large. My neurologist just switched me to the larger dose, because she wants me to ultimately taper down on the Topamax. If the Amivog is successful, it has fewer side effects, and she wants to rely more heavily on that as a preventative. However, Tricare is not as reliable at delivering that medication, so I have to consider that. For example, I wasn’t able to get it this month, because they randomly switched pharmacies from which they will allow us to get it, meaning when I went to pick it up at Walgreen’s, from which I should have had no co-pay, it was, suddenly, $585. Ummm…no.

As for the Topamax; it’s a drug that’s been on the market for years. They renewed their patent recently by making an XR version called Trokendi. Many people don’t react well to either one. It has a long adjustment period. I’ve been on it since I was in my 20’s, at varying doses, sometimes as high as 800 mg! I’m not saying that was a great doctor. I’ve tried to taper down, or off before, and it seems like anytime I get below the 300 mg threshold, all hell breaks loose. We shall see, if when the Amivog is in place, the same holds true.

Anyway, I’m always curious what other patients have in their toolbox. That’s not all my daily meds, of course, just those for migraine. I’m actually not on that many meds any more. I’ve gotten them pretty weened down, and I’m glad for that. If only I could take nothing. Ah what a dream!

 

One of my favorite images of me and Collin. He’s always comforted me when I have been sick in bed with headaches. Here he is, as a toddler, crawling into bed with me, being his goofy self. it’s such a “Collin” pic, for anyone who knows him. For those who don’t, it’s just a goofy kid, and an adorable shot. He’s always a comfort, and as he’s gotten older, a sweet, caring force. He’s always there when I need him.   Notice the red spot on my temple…I often get mild frostbite on my temples when i have a particularly bed headache, from direct contact with ice, for extended periods on end. It heals, but, I usually lose a few layers of skin first.

One of my favorite images of me and Collin. He’s always comforted me when I have been sick in bed with headaches. Here he is, as a toddler, crawling into bed with me, being his goofy self. it’s such a “Collin” pic, for anyone who knows him. For those who don’t, it’s just a goofy kid, and an adorable shot. He’s always a comfort, and as he’s gotten older, a sweet, caring force. He’s always there when I need him.

Notice the red spot on my temple…I often get mild frostbite on my temples when i have a particularly bed headache, from direct contact with ice, for extended periods on end. It heals, but, I usually lose a few layers of skin first.

So, I know I’ve been absentee, but I thought I’d throw a random update your way about what’s been happening around here, and get you up to speed on Rachel-ville, in no particular order:

 

Registration for Fall Classes


I had to register for the Fall Semester. I hate registering when you are at the bottom of the heap for students. It means you register last, as you watch classes fill up, until your appointed time. Thankfully, I got the classes I wanted. One of those classes is, wait for it, “Creative Writing: The Young Adult Novel.” I have no clue what I’m going to write about. But, not to fear, I dreamt that I had a great idea, last night. And, furthermore, I dreamt that great idea included a grizzly bear. Surely, I’ll be all set. As you can tell, I’m even nervous about this in my subconscious.

One Halloween, Collin went dressed as a monkey (note the banana sewn to his hand). Every house we went trick or treating to asked him to growl, because they thought he was a bear. It was super annoying. Plus, he had no idea what they were talking about. He had a fucking banana, and a long. monkey tail. Maybe my idea had something to do with this costume?

One Halloween, Collin went dressed as a monkey (note the banana sewn to his hand). Every house we went trick or treating to asked him to growl, because they thought he was a bear. It was super annoying. Plus, he had no idea what they were talking about. He had a fucking banana, and a long. monkey tail. Maybe my idea had something to do with this costume?

Speaking of Dreams

For the last three, count them, three, nights in a row, I have also had nightmares that were about my parents. Nothing says healthy and healed from childhood trauma more than your parents not only showing up in your nightmares, but causing you to wake up crying, right?

 

Manicures

I have started, in my 40s, these past few weeks, to get regular manicures. Before this, the only manicure I’d ever gotten, was for my wedding. I know, weird. I’m loving it! I had no idea how pretty my hands could look! Here’s my problems though: how do you talk to the women doing your nails? They are always talking to one another in what I think is Korean. I feel so awkward interrupting them, but I also feel awkward not talking to them. Well, I feel more awkward than usual. The girl I had last week didn’t do a great job. When I show up this week, if they put me with her, can I ask for a different girl, without seeming like a bitch? I’ve always gone by the adage that, in service industries, tip, and tip well; if I keep tipping well, will they like waiting on me, remember me, and do a good job for me?


Peri-menopause

Ugh, speaking of 40s. My periods have been acting wonky for a few months now. This month, it appears that it may not show up at all. NO, I’m NOT pregnant. For the past six weeks, sex has been the farthest thing from my mind, as my leg was so painful, I had considered amputating it. Plus, even if Bryon had caught me in an amorous moment, he’s had a vasectomy; and, he sent his little swimmers back for the six-week check afterward, all deadzo. Alas, I’m well over a week late. I’m perfectly okay sliding into that stage in life. I’ve been begging for a hysterectomy for years. I do not understand why insurance and doctors make this such a difficult procedure for women to get. I understand that it’s major surgery; but, the reasoning is always that, as women, we might change our minds regarding our fertility. Collin’s twelve; I’ve never doubted my decision for only one…in twelve years.

Hot flashes anyone? Just me? Okay.

Hot flashes anyone? Just me? Okay.

Kids…and Lice

Speaking of kids, they bring home lice. Collin was infested with lice by the time we figured out that’s what it was. I could see bugs crawling in and out of his hair, and I was picking them out, regularly, for days! Don’t judge my stupidity! I swear, I thought they were gnats. I kept looking at them, and thinking they had wings. I was sure they weren’t lice. I kept Googling what kind of bugs could infest your hair that weren’t lice. Try that search sometime. Know what the answer is? Lice. It was frustrating. Finally, we shaved his head to a buzz cut, because we were accusing him of just not washing well, and that’s why he kept getting these darn bugs. He ran his hand over his freshly cut head, and tons of bugs fell out. It was…gross. They were definitely lice. It was very obvious at that point what they looked like. That’s when the bells went off. For some reason, they looked different to me, at that point. Yes, I had it too. Yes, it was everywhere. Yes, I’m an idiot. No, I have no idea what I was thinking. I’d have sworn they had wings, staked my life on it. I believe the lice are all gone now. Thankfully, we have a very clean house, and it didn’t take much to disinfect it!

The worst part, to be honest, is that my hair is now past my belly button. Thanks to an irrational fear of cutting it. Getting that damn nit comb through that was a nightmare!

 

---But man-alive did it feel disgusting for a while there!

These are OUR personal lice. These came from Collin’s head and he took a pic while looking at them through his microscope. They are pretty gross little fellas, aren’t they?

These are OUR personal lice. These came from Collin’s head and he took a pic while looking at them through his microscope. They are pretty gross little fellas, aren’t they?

 

Kids…and Middle School

Is it any wonder that my little one was looking forward to riding Peter Pan’s Flight at Disneyland? This costume came with a little dagger (wait, no, it cost extra - but, we had it). The dagger made a little “shwing” noise. He carried it around, stuffed in his pants, for three years. He was obsessed with it!

Is it any wonder that my little one was looking forward to riding Peter Pan’s Flight at Disneyland? This costume came with a little dagger (wait, no, it cost extra - but, we had it). The dagger made a little “shwing” noise. He carried it around, stuffed in his pants, for three years. He was obsessed with it!

Collin promised me when he was very small, that he would stop growing once he was tall enough to ride the Peter Pan ride at Disneyland. He was quite sincere when he made the promise, as if he’d intended to keep it. That’s how little he was, young enough to believe his own words. I constantly remind him that he broke his promise about growing up. Now that he has clearly broken it, and he keeps getting older, and bigger, I sometimes wish he’d get on with the whole growing up bit, and reach 18, so he’d get through puberty already, because it’s making us crazy. Of course, I know that the days are long, but the years are short, and I’ll miss him when he’s out of here, making memories somewhere else, but someone, anyone, come tell me how to make my son care about schoolwork? His middle school orientation is next week. I can’t believe it. A few days ago, he was starting kindergarten, and now, he’s going to have a locker, be awkward, and go to dances. Time marches on.

i couldn’t resist this other pic of him at Disneyland from roughly the same age. Look at that little face. Pure joy. I miss those smiles that take up his whole face. Somewhere around 10, it’s like those smiles disappear and regular smiles come on, the ones that our normal faces have. I’m sure I’m as happy as can be in this picture, seeing glee on my son’s face, and i don’t look like him. I miss his full-smile face.

i couldn’t resist this other pic of him at Disneyland from roughly the same age. Look at that little face. Pure joy. I miss those smiles that take up his whole face. Somewhere around 10, it’s like those smiles disappear and regular smiles come on, the ones that our normal faces have. I’m sure I’m as happy as can be in this picture, seeing glee on my son’s face, and i don’t look like him. I miss his full-smile face.

Time Does March On

And on, and on, and on. I have physical therapy for my knee for another full YEAR. Can you imagine that. A year! Sure, they didn’t want to see me for over a week now, due to the whole crawling insects in my hair thing. They were even willing to waive the cancellation fees because they were the ones who were refusing to see me. I was willing to come in, but they didn’t want an infestation; something about all the pillows, sheets, towels and blankets they have there. I get it, I really do. But, I have a full year of sessions to make up for missing this last week. A few weeks ago, I had a session that made me cry, literal tears, all over the place. So, I’m not looking forward to my return, after such an absence. I’m sure it will suck, terribly. I have two therapists: one, whose personality I love, but who is cruel to my knee; one who’s gentle, but who has the personality of a wet blanket. It’s a great combination.

Time marches on, indeed…my baby 10 years ago. Can you tell that I’m feeling nostalgic this week, as my baby prepares to start middle school?

Time marches on, indeed…my baby 10 years ago. Can you tell that I’m feeling nostalgic this week, as my baby prepares to start middle school?

My Knee

Which leads me to an update on my knee. I can now bend it greater than 90-degrees. This is pretty good progress. I am “allowed” to go without my brace, but I “should” put it on if it feels “funny,” or “weak.” How’s that for vague?” I’m allowed to start walking for exercise, something I tried on our treadmill this morning, and I could only handle for about ten minutes before my knee said, “well, that’s enough of that, little missy!” My knee is still very delicate; I tried vacuuming the other day, and I had to sit, for three straight days afterward, doing nothing but icing it. Apparently, all the pivoting involved with vacuuming was something I was not prepared for. I’m going to see Billy Idol/Bryon Adams next week (I know, be jealous); the concert venue has about nineteen billion stairs, so I’m a little nervous how my knee (braced or not) is going to handle that little doozie! Plus, I mean, how does one not dance?

tenor.gif

I think that’s about all I can update you on…wait, except that I got an A as my final grade in my class. I am so proud of that! I was so nervous when I enrolled into this program. I didn’t trust my brain. What if it couldn’t handle thinking at that level again, or anymore. Academia is one thing. Harvard is quite another. I was terrified. I almost backed out. I’m so glad I stuck with the idea and proved to myself that my twice-operated brain could handle it. Sure, I have to proofread my stuff a lot more heavily, because I spell phonetically when I type, Sure, I have to take a lot more notes than I used to. I sometimes read a little more slowly. But damnit if I don’t love it as much as I used to. I’m reading academic articles again, for fun, academic texts, and more. I love school. I love learning, and I love what I’m doing. I feel alive again, and I’m so glad I took the risk.

P.S. Thanks for strolling down memory lane with me, enjoying all the pics of my boy when he was small and perfect. He’s still perfect now, he’s just not as squishy-cheeked and cherubic.

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?

 

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?  

 

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!

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.

You Cannot Have My Soul - I Made Pillows

I have lots to say about Comic Con, and about all kinds of geeky happenings of late. But first, I want to talk about these pillows. Boring, I know. Bear with me. I have a point. I always do, you know.

I made all of these throw pillows in the last 18 hours. I have been a throw pillow machine. Why? It’s the only thing in my life that I have any control over. And even that, this afternoon, has failed. We ran out of stuffing, leaving my last pillow unfinished. Fuck.

Last night, it occurred to me, bleary-eyed, as I was determined to finish one of these goddamned things, that being sick sucks your soul. It takes away all the bits and pieces of you, until there’s nothing left, and you grab onto random things, and fight for them, for tangible, random things to hold into the air and scream “you can’t have this too!” about. Yesterday, it was pillows.

Two blue Hawaiian pillows, a green Hawaiian pillow and a patchwork pillow. The patchwork one is made of a pair of shorts that Bryon used to have that he wore until he, literally, wore a hole in the seat. They were special to me because he bought them while we were dating. That means he wore those shorts for close to, what, over 11 years now! I had to keep them, in some way. Don't say I'm not sentimental.

Two blue Hawaiian pillows, a green Hawaiian pillow and a patchwork pillow. The patchwork one is made of a pair of shorts that Bryon used to have that he wore until he, literally, wore a hole in the seat. They were special to me because he bought them while we were dating. That means he wore those shorts for close to, what, over 11 years now! I had to keep them, in some way. Don't say I'm not sentimental.

Now that I’m all in the “recovery” phase of the second surgery, and things are looking up, fate decided that it wasn’t okay to leave me the fuck alone. I’ve been feeling like shit for months, specifically, in my bladder. I’ve been having an increasing amount of difficulty emptying my bladder. I’ve had several UTIs because of it, and now, it looks like I have either kidney, or bladder stones. The doctor is very concerned, and frankly, I am too. I can’t tell you how much it hurts. Considering that I’m still heavily drugged from surgery, and I’m doubled over sometimes, I can tell you that it’s wildly unpleasant.  

I’m being scrunched into a urologist’s schedule tomorrow, and I’m terrified. I’m terrified of the same things I was terrified of when I started my whole Chiari journey before. I’m scared of finding out that I’ve got run-of-the-mill stones; I’m terrified I’ve got something worse; but mostly, I’m terrified I’m in excruciating pain and there’s no immediately detectable reason.

For as “healthy,” and as good as I supposedly look right now, remember that I’m healthy comparable to where I was six, or eighteen months ago. I still need twelve to fifteen hours of sleep a night. I still nap nearly every day. I can’t work. I can’t pick up anything heavier than my cat. I can’t concentrate long enough to read anything more difficult than a young adult novel. I can’t exercise more than twenty minutes at a time. I’m making peace with how slow that recovery is, and what the cap is on how far it might ever go.

My "healthy" picture (there, some Comic Con thrown in). Even this is drugged up with some anti-spasm meds for my bladder, so I could manage to be here. It sucked. I was still super uncomfortable anyway, and only managed this day and the next day before they wore off, and I had to go home. Still, we had a great time!

My "healthy" picture (there, some Comic Con thrown in). Even this is drugged up with some anti-spasm meds for my bladder, so I could manage to be here. It sucked. I was still super uncomfortable anyway, and only managed this day and the next day before they wore off, and I had to go home. Still, we had a great time!

So, to have another blow, another thing added to the pile was too much to bear yesterday. Yeah, I know that something like this is something that anyone gets. I get that. But, the reason that I probably got it? A drug that I have been on since I was about 20, for migraine prevention, in varying doses, ranging from high, to super high, can cause kidney (or bladder) stones. So, do I have a lifetime of side-effects from being sick, to expect? I mean, that’s what happens, isn’t it? First, you get sick, then you get sick from being sick, right?

The thing is, when I spent about three hours raging and crying, it wasn’t for me. I didn’t shed a single tear for pity-party me. I was mad at how this fucking thing affects everyone and everything around me. It’s more time off for Bryon. More doctor’s appointments. More procedures. More anesthesia. More time that Collin watches me suffer. More appointments. More specialists. More time that we have to tell family that “Rachel is too sick to come to that family thing,” and hope that they don’t judge Bryon for being married to a piece of shit drama-queen.

So, I made pillows. Collin and I had picked out some fabric a few weeks ago because he’d been fixating on sewing. The thing about his autism is he fixates, sometimes for very short periods of time, and goes bananas for random things. A few weeks ago, it was sewing; so, we took him to JoAnn’s and let him pick out fabric for various projects, which he promptly dropped. I’d planned on doing pillows with this particular fabric, for our bedroom; but life, and his other, newer fixations, got in the way.

After not only urgent care, but an ER visit and a visit to my family doctor, my bladder really got bad yesterday. I don’t know what possessed me to feel like making the pillows would make me feel better; but, I was not going to go to bed until I finished a few of them. I insisted that, while being sick was going to take my job; my pride; my hair; and now my ability to fucking pee; I wasn’t going to let it take away my ability to make this pillow, right now. And yes, I knew, even then, how stupid it was.

So, I stood there, because it hurt to sit, and I made pillows. I made two last night, and two today. I made another one too, but I ran out of stuffing. It was like a mission. I couldn’t stop until I was done. I was in agony half the time because my bladder hurt so badly at times that I could barely lean; but, I got them done.

Why Hawaiian? I don't know, really. I think I've always wanted a bed like Blanche Devareaux had in  The Golden Girls.  I think they look pretty okay with the plain bed, anyway.

Why Hawaiian? I don't know, really. I think I've always wanted a bed like Blanche Devareaux had in The Golden Girls. I think they look pretty okay with the plain bed, anyway.

God damn it, I refuse to give up. Take a piece of my skull, take it twice. Put rocks in my bladder. Do what you will to me. Unless you are planning on killing me, I will win, even if it means that I have to waste a day crying, and then making fucking pillows to get my soul back on track.

When the Sun's a Black Hole

What no one tells you, when you finally get a diagnosis of a weird disorder, is that things like Chiari don’t like to play alone. “Yaaaaay!” You think to yourself, when the doctor gives you the grim news that you need brain surgery. Sure, that’s fucked up, but it means that you have hope of feeling better; and more, it means that you actually have been feeling like the shit you’ve been describing for months (or years) prior, and someone finally believes you. More, it means that the doctor believes you. He can point to it on an MRI, a tangible result. But, he neglects to tell you that the thing that you have, it’s just the beginning.

I learned this week that meds that I get to take forever, or maybe not (who the hell knows, anymore?) have made me allergic to the sun. I remember seeing a documentary once, when I was a kid, about a child whose mother had to keep her kid inside, twenty-four hours a day, shades drawn, because even a sliver of light would cause him to blister and peel, screeching in agony. Is this my future? I hope not! And, it’s likely not.

The other day, I was outside painting (working on a large sign for my boy, for Autism Awareness day—which he didn’t appreciate enough, but I’m not complaining—okay, I am), and noticed that my arms were itchy, and covered in red bumps. Since it was especially on my hands, I have enjoyed the three days since, trying to hide my hands from the public, so they don’t think I have a communicable disease, like the measles, when I do things, like complete a credit card transaction. Nothing says, “I’m not a leper,” like cramming your thumbs into the sleeves of your shirt, on an 80-degree day, and pretending it’s normal.

This is a damn big sign, right? Lots of time outside painting, lots of work, and it got over 150 nails with lights threaded through it too. He does actually love it. I just require a ton of praise for anything I do. I'm hard to please.

This is a damn big sign, right? Lots of time outside painting, lots of work, and it got over 150 nails with lights threaded through it too. He does actually love it. I just require a ton of praise for anything I do. I'm hard to please.

I’m really fair-skinned, and I’m always the first to burn. I don’t tan, I burn. Apparently, I’m Irish? I’m not even really sure. I’m one of those American mutt-breeds, with no real link to ancestry, except that I’m 100% positive that I’m Dutch. Do the Dutch burn?

Anyway, I’m careful to use sunblock; I cover up with lots of clothing, and even wear a hat. Yet, it was so warm, I took off my paint shirt, and worked out there in just a t-shirt, working away. In almost no time, I was covered in welts, not just the telltale ache of a burn.

I look forward to wearing flattering SPF50 or higher sun protective clothing. You know the type, right? Either flowing sundresses that look like they belong on The Golden Girls (don’t get me wrong, I love the GGs), or camp shirts that make me look like a park ranger (again, not that I don’t like park rangers, I’m just not one). I’ve acquiesced to a floppy hat, but I feel like this is a bridge too far. We’re going to Universal Studios this week, to celebrate the boy’s birthday, and I was literally browsing Amazon, trying to figure out ways to accessorize an SPF potato sack shirt with a belt. Help me.

A few days later though, the meds became too much. The rash was growing, instead of receding, and I’d not been in the sun any additional time. Plus, I was feeling terrible. I kept repeating how I just couldn’t put my finger on what felt terrible, just that I felt so awful. If you’d have asked, I’d have said that even my fingernails felt icky. All I wanted to do was lie down, but even that felt yucky.

I don’t read side effect lists of medications when I start them anymore, because I’m a hypochondriac. If it says that it’s possible to become spontaneously pregnant with a whale, I’ll be sure to birth the world’s first human-whale hybrid, on the spot. So, I usually give a med a fair shake, and then if I feel iffy after a while, I check into it.

This had been over a week, so I looked at the list, and under the, “if these side effects happen, stop immediately and contact your doctor,” were rash that looks like red pinprick dots, feeling sick all over, and irrational anger. Did I not mention that the sight of my husband made me so angry that I was having trouble restraining myself from not punching him in the face? My husband, who happens to be the most perfect partner in the world, and I wanted to smack him, just for asking, “what’s wrong? Why are you so mad at me?” I don’t know! But, stop being!

Do you like my "Honey, I'm the toilet, and getting ready to shower, but look at this rash that I'm suddenly, and immediately so concerned about that I couldn't wait for a more appropriate time to photograph it, and tell me what you think," photo? What? You've never texted your husband from the toilet? Okay, then you are a better, and classier person than I. So yeah, that's my bra on the floor, and those are my legs. And that's my hideous rash, and my dry hand, with all the moisture sucked out of it from painting a wooden board for three days on end. Meh, I text my hubby on the toilet. I could do worse things. I could've slapped him for existing.

Do you like my "Honey, I'm the toilet, and getting ready to shower, but look at this rash that I'm suddenly, and immediately so concerned about that I couldn't wait for a more appropriate time to photograph it, and tell me what you think," photo? What? You've never texted your husband from the toilet? Okay, then you are a better, and classier person than I. So yeah, that's my bra on the floor, and those are my legs. And that's my hideous rash, and my dry hand, with all the moisture sucked out of it from painting a wooden board for three days on end. Meh, I text my hubby on the toilet. I could do worse things. I could've slapped him for existing.

Yeah, so I’ve stopped that drug. I’m hoping that I’m allergic to the drug, and not the sun. I also hope that I'm not allergic to existing in the same house as my husband.  It would suck to be allergic to the sun. I've been off of it for almost 48 hours now, and I can already tolerate my husband's breathing much, much better, so thins are looking up.