Scoliosis (Or How I Learned It’s More Than A Back Problem)

(Note: I’m gonna be blogging a lot about what I’m going through with my health because of the national conversation around the repeal of the ACA and its replacement with the tax cut for rich people that they’re claiming is a health care bill)

My first exposure to scoliosis was a childhood friend (we’ll call her Annie). Annie was my best friend for a long time. I knew her in our little Catholic grade school. One day, she came in wearing a back brace. I was scared as hell. I thought maybe she broke her back or something. But when she explained it to me, I took it for what it was (she needed her back to be straight, like my retainer on my teeth, but for her spine) and moved on.

She never explained what it was like. Whether that was out of concern for me worrying, or just because she didn’t think it was relevant, I don’t know (we lost touch a few years ago).

But I came to learn what even somewhat mild/moderate scoliosis entails through firsthand experience.

I went undiagnosed for a long time. In fact, it took me getting into a car accident and needing a spinal x-ray at 27 for it to be properly diagnosed. But the signs were there. I’d had uneven shoulders and hips from the age of 11, and it was noticeable enough that my mother commented on it and started taking me to chiropractors. (I can’t hold this against her, she didn’t know that the practice of chiropractics may help some, but not those with scoliosis, let alone scoliosis we didn’t know I had).

I knew I had back pain, but I assumed it was because I was sleeping in the wrong positions and clumsy as hell for the longest time. I didn’t know my clumsiness was likely caused in part by the scoliosis.

And once I was diagnosed, I saw “scoliosis rarely causes pain” over and over on various sites. I kept thinking “Well, it’s all in my head.” And knowing how wrong they were now, I kinda wanna take everyone who wrote that crock of shit lie, take them by the shoulders, shake them, and tell them off. Because dear GOD, is that a lie.

Not only does it cause back pain, but it causes pain all over. I deal with pain every day. Some days, it’s a 4 or 5, just in the back and hips. Other days, my knees crunch, my hips are on fire and my back is a giant knot. Sometimes, it’s a combination of various pains, like today. My hips are killing me, my knees sound like they’re full of rice krispies, and my head and shoulders are aching (one shoulder is actually 2 inches lower than the other right now).

I’m just having a really hard time with it. I can’t help but think that, if someone had bothered to look instead of saying “Well, Fionnuir seems fine, and considering they don’t have problems with being active on the playground, there’s probably nothing wrong,” then maybe I wouldn’t be in the pain I’m in today. Maybe there wouldn’t be two inches difference between heights of my shoulders and hips. Maybe I wouldn’t have sciatic issues and knee issues and constant pain and headaches. Maybe I wouldn’t be miserable so much.

But, yet again, ableism is a bastard of a thing. We look at whether the person is able to move freely, rather than taking a deeper look at why something’s off in their body, and this is the result. Twenty years later, after the first signs started to show, I’m sitting here in what feels like an annoyingly-tightly-wound rubber band of a body on good days and a torture device turned body on a bad day.

Believe people when they say something’s wrong. Don’t ignore obvious signs that something’s off, especially in your kids. Don’t think that something like shoulders and hips being misaligned is a result of a ‘boisterous child who’s clumsy’. For your kids’ sakes, for your sake, for EVERYONE’S sake, don’t ignore red flags, because eventually it’s going to go from being a warning to an active problem that can rob someone of their ability to function without pain, and it can end with them feeling like red-hot pokers are jabbing them all over.

So my next adventure is to try and get to orthopedist (along with a dermatologist for my eczema, and possibly an allergist, as the past few days spent outside have seen my itching increase). I’ll be documenting that here, so I’m sure that’ll be an exceptionally fun ride.

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The Hell That is Eczema

I wasn’t going to write this entry, because it really seems kind of weird to complain about it. Eczema, while it is an autoimmune disease, is a mild one in the grand scheme of things. But that doesn’t change the fact that today is hell. Itchy, burning, painful hell. So screw it.

I’m having a pretty severe flare. Below are picture of (in order) my arm, my back (midback up, I had to take the picture myself from over my shoulder), my neck, and my hands.

All those bumps and red patches? Are itchy and painful as hell. Add to that, my hands are swollen thanks to the flare, so there’s double the pain there. Motrin takes the edge off, but dear god, it still hurts.

People hear eczema, they think “Oh, it’s not that bad.” That’s what I thought until I was diagnosed with it after about 3 months of living with a flare in my armpits that caused cracking, itchy skin so severe that I started bleeding from it. (My doctor misdiagnosed me with a fungal infection, despite the fact that all the antifungals she prescribed never took care of it. I’m STILL pretty miffed over that.)

I got a proper diagnosis from the doctor I’m with now (someone who listens to my concerns and actually doesn’t brush it off when I tell her something) and while I’m treating it with a steroid cream she prescribed me, it takes a while for it to work. I don’t know for certain what my flares are caused by, so I don’t know what to avoid to keep them from becoming so severe, but I do know that I’m likely not going to be able to keep skating by on just the cream. I may have to start taking something stronger for it, which means adding another medication to my list (Yay. :|)

And don’t get me started on the looks I’ve been getting. I went out today to a little craft show they hold in my town, where local artists and creators of all kinds of products come from around the state to sell their stuff. People were looking at the spots on my neck, my arms, and what was exposed of my back, and wincing, grimacing, or doing the ‘wide eyed stare and look away quick before they think they’re caught’ thing. Not exactly a fun day for someone looking to get their kid out for a walk and enjoy their day.

On top of all that, I have to worry about whether it’s worth trying to get a new medication in light of the current situation with health care. Mine is in danger. Typical treatments for eczema that affect the immune system are around $50K a year, which I can’t afford, and I don’t even know if I can use them due to being so susceptible to pneumonia (which I’m STILL fighting off the last remnants of).

Yeah. Today is itchy, burning, painful hell with a side of stress. The only plus side to all of this is that my (normally ‘it could be worse’ spouting) mother is being surprisingly sympathetic and helping me. I think it’s because she can see the physical signs of this and knows it’s driving me up a wall. But all in all, today’s shitty and I just wanna curl up into a ball and fall asleep until this all passes.