It’s been a bit since I’ve written a “real” post, and I feel slightly guilty about that. There’s so much going on in World of Warcraft right now since patch 5.2 dropped — new raids, new rep, the whole shebang — and I’ve been absolutely dying to write a treatise on backstory and how much I love it, Hell, even back that up with my own little bit of creative writing to explain the death-by-deletion of my first paladin. I’m also attempting to get a Bunny-4-Warchief campaign going. I even made a hashtag and a poster for it.
Have I actually done anything of real substance over the past few weeks? Beyond my awesome guest spot on the even awesomer Let’s WoW! podcast, not really. I’ve been too busy weaning off of my once-miraculous psych meds.
Any of you who’ve ever taken similar medication and had to wean off of it for whatever reason are probably cringing right now, and for you, my brothers and sisters in inconvenient brain chemistry, I do not need to provide an explanation. Those who’ve never had to work anything out of their system save for maybe an ill-timed doobie three days before a drug test may be confused, so I’ll put it in the simplest terms I can manage: it’s like The Exorcist, but with significantly fewer crotch-stabbings, and I’m pretty sure Satan himself would put up less of a fight on his way out.
I’ve been pretty candid about my struggles with the Sha of Complex Mood Disorders and PTSD already, but for those just joining us, hi, welcome to the show. After being misdiagnosed for twelve years and being forced onto regimen after regimen of medications that were the complete opposite of what I needed for my condition, I finally found what I thought was the droid I had been looking for. Not only did it work its scientific miracles without the awful side effects usually associated with such medications, its label-use was for epilepsy, meaning that I could go to the pharmacy to refill it without having to worry about weird looks from anyone or openly discuss my experiences with that particular med and people would think “hey, she’s not crazy, she’s just no fun at raves.” It was a pretty fortunate boon that blinky lights are my natural enemy, anyway; not to grand-mal levels of seizures, but enough to make my brain completely lock up and then do what I like to refer to as a hard reset. It helped my mood and made it so that I didn’t have to avert my eyes every time an emergency vehicle passed with its lights on.
Yep, things were pretty great… for about a month.
I remember getting out of bed one morning and almost screaming in pain. It felt like somebody was driving a railroad spike through my foot. I originally chalked it up to a bad flare-up of plantar fasciiosis, something I’m no stranger to due to dancing and figure-skating for a good chunk of my life. I’d had issues with it before, and while annoying, it usually went away after a short time.
Six months later, even walking with a cane wasn’t helping, and the pain had spread into both feet and lower legs. There were several times when I’d try to “walk it off,” so to speak, and find myself collapsed in a heap because the pain was so severe my body was basically telling me “NO, SIT DOWN” whether I chose to listen or not. I couldn’t go shopping with my friends or do anything that required walking more than a few steps. Getting from my bedroom to the kitchen in order to take the kettle off of the stove for tea was an ordeal. I was going through a pretty serious case of denial, accepting an invitation from one friend to go ice skating (and having to cancel the next morning before I even got anywhere near the ice since I couldn’t even stand). Soon after, I found myself going through my old dance costumes in preparation for sale. I had given up on ever being able to dance again. By this point my ankle joints were completely frozen, and my knees following suit. Each step I took was from the hip, giving me an almost comical gait and yet another reason to be self-conscious in public. The jokes I made about turning into a mermaid for real were disguising the depression and fear that I’d eventually lose the ability to walk at all.
To top it all off, I was losing my ability to speak coherently. I was easily confused, forgetting things within just a minute or two of being told — my memory has always been pretty bad thanks to a couple of concussions, but not forget-what-I-was-saying-in-the-middle-of-a-sentence bad — and occasionally found my speech slurred. I’d try to say one word and end up saying another that was similar, but not quite, i.e. “bound” instead of “band.” I developed a severe stutter that would crop up whenever I had to speak more than a few sentences at a time. On the worst occasions I’d find myself unable to speak at all, the words clearly visible in my brain but not making the trip down to my mouth. I remember trying to talk to The Fiance one morning and only being able to blurt out simple, extremely slurred words, one at a time, like a two-year-old. Thankfully, my writing was unaffected by any of this, but I was still terrified. I had already been evaluated once for autoimmune diseases like myasthenia gravis and multiple sclerosis, though the test results had come back inconclusive. Now it was beginning to look like the time for a retest.
As luck would have it, I ran out of my medication a couple of days before the next available appointment to get my prescription refilled. The doctor told me that as long as I didn’t go beyond three days med-free, I could just resume taking them normally once I picked them up from the pharmacy. A funny thing happened, though.
For those two days, my pain level was halved.
The night before my appointment I sat on my bed, staring gleefully as I drew circles in the air with my feet, something I’d been unable to do for many months. I spent that entire night doing research, finding horror stories almost identical to mine from people (mostly women, interestingly enough) who had been on the same medication. It was far too familiar — started out great, amazing success with stabilizing moods, quickly devolved into mysterious and severe symptoms that went away after weaning off of it.
I would likely have made this discovery even without the scheduling snafu, since the state of Florida helps to cover the cost of this medication (which averages about $350 for a one-month supply without insurance, and since it was for an “off-label” use there was a chance that many insurance companies wouldn’t cover it, anyway) and I’ve got just a couple of weeks left until my move to California. I had to wean off of it, anyway, because of the high risk of running out of the medication and having to go cold turkey before finding a new solution out west. The doctor, of course, fought me tooth and nail. “You’re doing so well on it,” he protested.
Sure, doc. My moods are less spike-y and I’m not afraid to leave my house anymore, I just can’t walk or speak. Totally doing great over here!
I did manage to finally get instructions on how to safely wean myself off of the meds, though, by mentioning that at the end of this year The Fiance and I are going to be trying for a baby. It was at this point that I was cautioned to take a special regimen of folic acid and other supplements because the medication has apparently left me with a higher chance of having a baby with a neural tube defect like spina bifida or anencephaly. Whether it’s permanent or only temporarily elevated, I’m not sure, but once I get back to my California home and have wider access to alternative therapies and medicines, I think I’m going to be seeking other avenues of treatment.
Here I sit in the meantime, though, now on day 2 of not-taking-any-pills-at-all. Remember when I mentioned The Exorcist? The pea-soup vomiting part was pretty accurate. My stomach has been a wreck to the point that I’m eating only out of necessity, and having to give myself a pep talk before each bite because I know that in an hour or so it’s going to take its horrible revenge. I have been extremely tired and spent a full week feeling like an 18-wheeler had parked itself on my body. I’m on a hair trigger, easily annoyed by other people (though thankfully my loved ones are understanding and I’ve been fighting hard to keep my short temper in check through this detoxing process). But I can walk, and run, and speak with only occasional glitches that I expect will go away by the time these pills are completely out of my system. I’ve just been too exhausted to do anything that I’m supposed to be doing, including, but not limited to:
- packing for the move
- putting away laundry
- writing anything of note
- hanging out with friends
- crafty stuff
- anything that does not involve playing videogames and/or laying in bed watching Supernatural
But every day gets a little bit better. My thoughts become clearer, my mood improves, and today I was even able to eat lunch without barfing everywhere, extremely fortunate since I was using salmon-flavored cream cheese on my bagel and fish generally does not repeat itself well. WordPress is telling me that I’ve written over 1,600 words already. Yee-frigging-haw.
I’m also telling my jerk brain to shut its jerk mouth when it says jerk things to me, like “you’ll never be able to make it without meds” and “you’ll just end up afraid to leave the house again.” Obviously I’m never going to be cured, but everyone I talk to agrees with me that going home to California, a place where I had the best years of my life and have an even tighter-knit support system of family and friends than I do here is going to do wonders for my ability to keep fighting. I’m going to get out there, start a life with the man I love, and get my dream job, which I am going to be damn good at, and then I might also get a corgi that I can take to work with me every day because corgis, man, they look like somebody forgot to make the rest of the dog, like someone on the dog assembly line was all “Oh shit, Frank, we gotta finish this dog” and Frank was just like “Nah man, we clock out at 5, and it’s 5, so let’s go get drunk, we’ll finish it tomorrow” and then there was a communication problem with the shipping department and the dog just went out all unfinished like that but it was a huge hit with the people so Frank and his buddy got huge bonuses and a Nobel peace prize and retired in relative comfort until that sex scandal hit.
All of this being said, I’d like to do the responsible thing and point out that I AM NOT ENCOURAGING PEOPLE TO STOP TAKING THEIR MEDS. My case was pretty severe, and I honestly believe that the cons far outweighed the pros with regards to my continuing the regimen. As I mentioned earlier, I will be continuing to seek treatment in whatever form that may take once I get settled in my new-old home. If you’re having doubts as to whether your particular meds are helping or hindering, talk to your doctor before you do anything, and if that doctor doesn’t give you a satisfactory answer to your questions, find one who will.