Day 25: Most Challenging Symptoms
Let me tell you how difficult this post was to write. I had written "UGH" and only "UGH" for a total of 5 days, and I'm honestly still not sure what to say.
In fact, I haven't written anything at all, for any prompt. A large part of that is the heart-wrenching tragedy in Uvalde. It's about to get a little dark for a minute. I'm not going to go into details about the shooting itself or deconstruct the timeline or whatever the hell else you can google. But I am going to talk a little bit about what it means to be a chronically ill, disabled educator in America. Or, I guess, how being disabled and chronically ill sometimes means that you have to give up being an educator in American schools. It's just upsetting. I'm angry. I'm sad. If you'd rather stick to the strictly medical stuff you can click this link, which will jump you to the next section of text. But it's a layer of disability that isn't discussed often and I think it's valuable, though painful, to examine. Whenever anyone says some bullshit like "don't let your disability define you! You can do anything you put your mind to!" I just want to be like, "I mean...that would be wildly irresponsible and selfish of me. And also, no. No I can't."
I miss teaching. If you've heard me talk about that subject before, you'll have heard me say things like, "I can't be responsible for a room full of children" or similar euphemisms. What I mean is, "if there's an emergency, I can't guarantee that my body will be able to keep the babies safe." Or more frankly, if there's an active shooter situation, I'm not going to be able to barricade a fucking door. I'm not prepared to fight off any attackers to defend a classroom of children. Emotionally, honestly, I've been prepared since day 1. There is zero doubt in my mind that I would if I could. This is something that I've thought about a lot (as has pretty much anyone who's spent a significant amount of time in schools in the last 10 years). The day I realized I wasn't physically able to do that anymore was a scary, heartbreaking day. The kind of day where you sit in your car and cry after work because your stomach hurts, because all of this is crashing around in your head all at once, because there's no fucking way that this should be an issue, because tiny babies should not have to think about this, because tiny babies should be able to rely on the adults around them to keep them safe, because you are an adult who is supposed to keep them safe, because you can no longer keep them safe. Pieces of me would literally break, even with adrenaline, and then what would I be able to do for them? No child needs to see me get hurt because I can't take care of myself ON TOP OF all the other fucking trauma that exists in a situation like that. I hate that that's something I need to consider, but welcome to America, I guess. That's the reality right now. Did you know that in the US, as of the writing of this post, there have been at least 77 incidents of gunfire on school grounds so far this year, and at least 14 mass shootings since Uvalde? It hasn't even been a week. It's not like this is the only reason I had to stop teaching (not even close, especially not now), but it is a major one. There have been a couple of instances in my teaching career in which there were threats or actual attacks, either at schools I worked at but just happened to be off or at a different site that day, or at a school a few minutes away. I've been lucky.
So whatever the most challenging symptoms are, they're the ones that are keeping me from doing my job. From doing what I love. No amount of anyone's toxic positivity or ableist productivity posters are going to magically turn my body into one that can handle being in a situation like that. So don't come at me with "don't let your disability tell you what you can't do." Disabilities are not bad in and of themselves and whatever complicated feelings I or anyone else may have about being disabled or chronically ill, I just can't stomach putting nonconsenting people at risk because I feel like ignoring my body's very clear boundaries.
So. Yeah. And with that out of the way, we can talk about the more everyday challenging. It's a complicated answer because, like many things with EDS, my symptoms are variable. If you ask me this question in a couple of months, the answer might be different. For a very, very long time my most challenging symptoms were pulmonological. My severe asthma was uncontrolled and was controlling most aspects of my life. But with the help of a brilliant and dedicated pulmonologist, we figured out a (rigorous) medication routine that mostly keeps my lungs doing what they're supposed to do. Mostly.
Lately, my most challenging symptoms are neurological.
- occipital neuralgia
- trigeminal neuralgia
- essential tremor
- ...and so much more!
What are brains, really? Honestly? Why do we need them when they cause us such pain?
I have no answers for you, I am sorry. No really, I'm sorry, it's not fun. It has given me a lovely opportunity to become acquainted with identifying a variety of qualities of pain, though, so that's something.
In the last month or so, something has been out of place on the right side of my neck or cervical spine. It feels like my neck needs to pop constantly, and my range of motion is less than it usually is. To be fair, my range of motion is usually pretty extreme. So now it's maybe in regular human ability territory. But there's just always this resistance, you know? And pain. I've basically been painting on the Voltaren Gel. Rachel worked on it in PT last week, partially using some positional release therapy techniques (NOTE: the manual manipulation shown here was being done by a licensed professional; everything was extremely gentle, I was fully supported, and I've been working on strengthening the surrounding muscles for months now. DO NOT TRY THIS AT HOME OR WITHOUT THE GUIDANCE OF A MEDICAL PRACTITIONER, ESPECIALLY IF YOU HAVE CRANIOCERVICAL INSTABILITY). It definitely helped for a little while. But then it went right back to the excruciating pain game. It's also just sort of...crunchy? Every time I tilt my head from side to side or rotate it, there's like this grinding gravely sound and feeling that is Unpleasant. No thank you please. One thing I've noticed is when it's like this, I'm at a much higher risk for a trigeminal neuralgia flare. There's always some relief on those nerves after my neck does pop, as long as I remember not to put my head/neck in certain positions. It's just that lately I have to stay on it All The Time, because if I forget and slip up, that's it I've got a one way ticket to electric-jaw-pain-ville until my body decides to calm the hell down and send me back home to only-the-mildly-looming-threat-of-pain-town.
As things stand right now, I need a new neurologist. My last one passed away suddenly last year and I haven't found anyone else yet. Due to some circumstances you can read about in my upcoming Nerve Block post I also haven't had any nerve blocks or PIT (perineural injection therapy) in months, so that's been a little bit rough. Possibly also part of the reason my neck/spine is acting up. The thing about occipital neuralgia when you're in an active flare, is that I don't really know what triggers an active headache (headache feels like the wrong word, but there isn't really a word for stabby-stabby-into-brain, so I'm working with what I've got). But I do know that since The Incident (listen, this Nerve Block post is going to be a lot, so much has happened), I can't really put much pressure on the back of my head. Or the lower sides of my head, really, because that's where the minor occipital nerves are. Like, ever. So trying to sleep is super fun. Hopefully I'll get a good neurologist soon and they'll be able to sort some pain/headache relief out. Until then, I'm just kind of stuck.
I've got migraines meds that I can take when I feel one coming on, and they work pretty spectacularly. The first time I took one it was like magic. I don't know that I've ever experienced another medication effect like that before (zofran comes close, but this is still more amazing). I also finally have tremor meds that work! Which is a huge relief, because I'd been told by multiple doctors that I'd exhausted all of my options, unless I wanted a pacemaker in my brain. There aren't currently any medications for essential tremor. It's mostly treated with medications for Parkinson's or epilepsy. So finding one that works with your brain that doesn't come with prohibitive side effects can be really tough. The one I'm on now largely got rid of my appetite, so I forget to eat a lot of the time. Which is often problematic. And for awhile there is was a huge struggle to force myself to eat because I just never wanted to. But once my body adjusted to the meds (and then adjusted to the maximum dose), everything mellowed out and the worst of those symptoms don't happen anymore. And whatever this is, it's way better than the zombification that came with some of the other meds. On one in particular I had a sever amount of trouble thinking of words and/or forming sentences. I mean, way, way more than the normal brain for issues. And I'd legitimately lose my phone and go looking for it...while it was in my hand. That happened a lot. And I was just so sleepy all the time. But the meds I'm on now don't do any of those things. Unmedicated, my tremor is so bad that I sometimes can't eat or drink because I can't get things to my face. But this stuff gets me to a place where it's generally mild apart from a small set of circumstances. It's not gone, I don't think it'll ever be gone, but I'm not dropping anything or accidentally throwing or breaking stuff, so I'm putting it right at the top of the win column surrounded by gold stars. It's still a problem. Some days are better than others and it makes everyday things like eating, writing, doing puzzles, cooking/baking way more difficult than if my hands were steady.
I think that's all I've got in me for now. I'm going to try to get some other posts done since the end of the month is, you know, tomorrow. But I'll keep using this blog for medical updates and information after the month is over!