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.

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Disability and Me: Part 1

I have a complex relationship with  my disabilities, namely that for the longest time, I didn’t believe I was disabled. I was fed a line by the people around me that being disabled meant you couldn’t do things on your own, or needed a lot of help. My only examples were my grandfather (a double amputee due to gangrene that was caused by diabetes, a man who was lobotomized in 1960 to get to an aneurysm that was threatening his life), my father (chronic knee problems that necessitated a cane at times and a placard for parking spots), a double amputee teacher at my Catholic school, and a person with cerebral palsy who used a wheelchair in my public high school.

The few examples I saw on TV were people like the ones I already knew, who needed mobility aids or who were amputees, that’s it. I didn’t know that anxiety, ADHD, scoliosis, PTSD, or asthma are considered disabilities. I didn’t know that the pain I was dealing with, both physical and emotional, were and are disabilities. In fact, it wasn’t until I stumbled on tumblr and started searching out disabled bloggers after seeing a post on my dash that I even knew that I, in fact, was dealing with disabilities.

But, once I read up on things, once I stopped internalizing the idea that disability meant you needed some sort of mobility aids or an official document saying ‘this person is disabled’, my life honestly sucked less. I stopped beating myself up over not being able to get around as easily as my non-disabled peers. I stopped thinking that my pain, the difficulties I face, were laziness at best, or some kind of vindictiveness on my part at worst (things I’d been told at various points in my life).

I still struggle with all of that, to be honest. I don’t apply those standards to anyone else, either. That’s the messed up part of all of it. I hold myself to these impossible standards (thanks, in no small part, to my parents (a whole other story that I’ll get into eventually on here)) and hold myself to ableist ideas of disability sometimes, all because of what I was taught in life. I still struggle to even allow myself to claim that word because of what I internalized through my life.

I could use mobility aids on some days. Today was actually one of those days. But those come with people staring at me because I’m ‘too young’ to need them, or don’t look like I need them, or because my mother is ashamed to be seen out with me if I use them and something’s not broken (yes, she’s said as much to me). So instead of using something that’ll help me, I suffer through pain. I deal with it, because any time I mention my pain, it’s invalidated because she ‘has it worse’ and because she’s older so obviously her problems are more serious, and she makes do without those things (out of a misplace sense of pride).

I’m writing all this out to get it out and to say that I’m really sick of shaming of disabled people, both younger disabled people and disabled people who don’t “look” disabled. It’s hell. Days like today, it’s absolute hell. I know I should be able to say “fuck it” and just use the damned cane. I know I shouldn’t care. But I do, because I’ve been through so much abuse in my life and because of PTSD and anxiety, even a sideways glance from a stranger can start me crying. So I suffer, because of society’s messages it’s sent me, and because I can’t get past my own internalized ableism and the idea that I should be ashamed of being in pain unless something’s broken.

I really hope I can get past it one day, before I’ve wrecked my body from all this. I don’t wanna screw myself up that much.

Ah, That New Blog Smell!

So, I suppose this is where I explain why I’m here. For the longest time, I was on tumblr (I know, I know) because of the potential to meet people who didn’t suck. It worked out alright, and I met some amazing people. However, tumblr’s been acquired by Yahoo, whose parent company is Verizon, and their vulturous staff sees Black Lives Matter as a way to make money, and they will NOT be speaking out for net neutrality, as they have in the past. This is a huge no-go for me. So I’m settling in over here.

Here’s a little info about me, since you’re on here:

I’m Fionnuir (Fyuh-nore), but you can call me Fionnuir, Finn, or Nora. If you’re gonna talk about me in any capacity, use they pronouns, please! I have a four year old who constantly makes me laugh and keeps me on my toes. I’m asthmatic, ADHD, have anxiety, scoliosis, eczema, chronic respiratory problems, and PTSD. So I’ve got quite a bit of energy sapping disorders going on. This is going to be a place for me to blog about all of that, and societal issues, as well as venting/blogging about my narcissist parents and the challenges of raising a child to not fall into that sort of personality/mentality.

I’m open to talking to anyone about what I go through, but I WILL NOT TOLERATE HATE on this blog. Racism, sexism, homomisia and transmisia, anti-Islam comments, or anything of the like will get you banned.

Anyhow, welcome, I hope you enjoy your stay, and if you find anything of value here, tell your friends!