My spots are getting out of control. I found an OTC topically coal tar that seemed to be helping quite a bit, but I have a bunch of new spots and every part of my epidermis is incredibly itchy. The spot on my nose is getting bigger.
Thomas stayed home sick today; I gave him my cold. I want to go get him the box of amazing organic herbal tea I drank while I was sick, but my knees are malfunctioning. They won't bend, and they won't straighten.
So I am sitting here on my memory-foam mattress thinking about psoriatic arthritis. Because this is my blog, and my space to freely voice my opinion, I am going to honestly tell you all how I feel, even if it makes someone feel like an asshole.
Not a lot of people know much about the disease I have. It doesn't really kill people, so who cares? I want to tell you what it does, because I shouldn't have to feel like a lazy, spotted, itchy, gimpy, complainy person.
Psoriasis creates itchy, often painful raised flaky spots all over my body, including one spot covering about 70% of my scalp right now. Everywhere I go I leave a trail of flakes, and there isn't anything I can do about it. People tell me to "stop it", tell me it's "gross" and stare. If I don't take care of it, it becomes severe very quickly. To take proper care of my skin I should spend a few hours every day applying lotion or medication to every spot, avoid chemicals in shampoos, soaps, lotions, etc., and go tanning 3 times a week.
Psoriasis can be very time consuming and expensive to manage and can be very socially isolating. No matter what you do, you will get "looks" from people everyday, so it's best to get over that real quick.
Psoriatic arthritis sucks the life energy away from my body, then blesses me with unpredictable pain. It is always somewhere, but moves around my body with different intensities. When mild I'll have a dull aching or just bones that feel pushed together. On average, I usually have one or two major joints at a time that have severely limited mobility. I won't be able to lift my arm, or bend a knee, or move my leg for instance. And when a flare becomes severe my brain becomes fuzzy, all I can see is red and my entire body will spasm with the most unimaginable pain that makes it difficult to breathe.
There are a lot of things that I want to do but just can't. I often have to cancel plans I make. This is why now, I practically refuse to make plans. I don't want to have to call and tell anyone how terrible I feel, I just want to have the freedom to hide away when I am hurting too much. I really don't have to ability to commit to anything that involves being clear headed or physically present.
I haven't figured out how to convey this to people. they get frustrated when I can't commit one way or the other, they make me feel like they think I'm just lazy. I know I have people out there that care about me and have been good friends to me, but I don't have anyone in my life right now, other than my mom and my boyfriend, that calls to talk or wants to hang out with me. I quit seeing the majority of my friends when I quit being about to drink. Now, I choose not to drink much ever because my body will just hurt too much later.
I have come a long way in learning to live with this condition. When my skin first broke out I covered every spot with clothing. By the time swim season came around I was forced to get over that. I had a friend in college who told me once how much he admired my being comfortable with people talking to me about my skin and not trying to hide it. I wasn't as strong as I seemed to be then, but his complement brought out the strength I had been feigning. In fact, he is still the person I call when I need a good friend.
It's a good thing I learned to live with the psoriasis, because the arthritis came on quickly. I was officially diagnosed when I was 21. It has been three years, of which quite a bit is fuzzy, but that's okay. I feel like all the pain has made me appreciate all the little things in life so much more. I used to get caught up in drama, or work too much, but I can't really do that now. I spend all the time I can doing what I enjoy; reading, writing, going to the beach, hanging out with my animals.
Thomas is quitting his job and we are working together on two businesses right now. Hopefully someday soon we can move somewhere warm, preferably within close proximity to a beach and some hot springs. For now, my knees feel slightly better so I am going to go get what I need to take care of this sick boy!
Happy hump day ya'll.
No comments:
Post a Comment