by Band Back Together | Jul 1, 2015 | Invisible Illness, Medical Mystery Tour, Pain And Pain Disorders, Psoriasis |
I had a moment of realization this morning. I don’t KNOW that I have psoriatic arthritis yet. I’m clinging to this diagnosis, yet I haven’t seen my xrays. I haven’t seen the blood tests. Who knows what they say? I know something’s wrong. I know it’s not all in my head. But there are so many things it might be.
Let’s lay out, 100% what we know about me.
1) I have psoriasis. My elbows and feet are flaky, itchy, painful, masses of skin problems. I’ve had psoriasis for as long as I can remember. FOREVER.
2) My hands hurt. My hands hurt every morning when I wake up. It takes an hour of slowly moving my fingers to be able to get up and brush my teeth and hair. To get dressed. Sometimes I can’t handle buttons or zippers at all. Some days my husband has to open doors for me – not because he’s a gentleman, but because I can’t turn the knob on my own. Sad but true: I didn’t quit smoking to be healthier. Or to save money. I quit because I couldn’t consistently use a lighter or matches and holding something so narrow hurt my joints.
3) I have hyper-mobility syndrome. Every joint in my body extends past the normal set-point. This is partially why no one believes how much I hurt… my joints are still moving in the normal range of motion! But, doctor, they used to move MORE. Apparently that’s not enough.
What I know, 100%, is that I hurt. Sometimes a little. Sometimes a lot. Movement is good – to a point. Resting too long makes my joints stiff. I’m finding myself more frequently getting feverish without being sick. In general, my temperature is higher than it used to be. The shapes of my joints are changing. The color of my skin changes with the level of inflammation. When I hurt, my hands swell to twice their size or worse. My fingers look disgusting.
So, what’s wrong with me Doc?
I’m clinging to psoriatic arthritis because even though it’s life-long pain, there are treatments. It could get better. At the very least, it could stop getting worse. That’s all I’m asking for now – that today’s pain is the worst it is going to get.
by Band Back Together | Oct 7, 2010 | Abuse, Animal Abuse, Fear, Grandparent Loss, Pain And Pain Disorders, Psoriasis |
Let’s take a look at some things that are total bullshit right now.
Psoriasis is bullshit. The itching, the peeling skin, the pain. People staring at me. People making nasty comments about me, asking to be moved to a different table so they don’t have to sit near me, avoiding any chance of touching me. All bullshit.
Medications to treat psoriasis are bullshit. All the damage it can cause, the extra blood tests needed, the worsening of the itching (and to think, I thought it wasn’t possible to itch MORE), the dryness, my lips chapping and bleeding even though I’m practically attached to the chapstick tube. All bullshit.
My best friend’s Grandma died yesterday, and the best I can do is help her by editing a couple of letters she needs to send, and being there online. Because she lives several states away, and I can’t just go hug her and tell her that she can relax and cry, and that I’ll take care of the huge list of things she has to do. That she doesn’t have to hold it together alone. Bullshit.
That people I don’t even know online have lost people so very special to them, and there’s not a damned thing I can do to help. I read their words, and I can relate to how they feel, but I can’t find the words to help. Instead I’m sobbing my heart out for people I’ve never met, and wishing that somehow, I could make it just a little better. All bullshit.
I’m afraid to walk from my car into the store because my purse might get stolen again. I should not have to live in fear. Fuck you, asshole, for stealing my purse, and part of my confidence. It was really fucking hard to get that confidence, and it will be even harder to get back there again. Total bullshit.
The Mate is in constant pain, and no matter how much I want to, there is no way for me to make it better. He’s on so many heavy-duty drugs, and still, he hurts all the time. Medical science can find a way to build robotic arms and legs, and no way to help him with the pain in his spine? Bullshit.
Animal abuse. I don’t even need to go into how many animals are out there suffering, and I can’t fix it. I do what I can, I have more animals than I can easily take care of, I transport, and still, there are so many more out there suffering. It’s all bullshit.
Parents that are assholes, abusive, nasty, whatever. I had them, and I hate that anybody else might have to go through something similar to what I’ve gone through. I HATE IT I HATE IT I HATE IT. I just want to gather everybody up in my arms and some how make it better. And I can’t. And that’s bullshit.
There is so much more bullshit I’d like to cover, but I’m having trouble typing through my tears, so I’m going to go hug my dog, find some tissues, and try to figure out at least one bullshit thing that I might be able to fix.
