I have no choice.
Like many of you, I have had my ups and downs with psoriasis and psoriatic arthritis. I’m currently (as of 2017) 41 years old. Growing up, I knew that my father and nearly everyone on my fathers side of the family had psoriasis. I hoped beyond hope that I would not face the same fate, but sadly, it was not to be. I suppose the first symptoms started when I was in high school. I used to play soccer and basketball and was fairly active. My freshman year, I started having intermittent problems with my right knee. It would swell and be hard to walk, but the doctors said there was nothing wrong with me. I just assumed I was doing too much at one time as I played both sports most days.
Fast forward a little bit. Around the time I was 25/26 or so, I was misdiagnosed with bipolar disorder. Despite family history, the psychiatrist I was seeing decided to put me on lithium. I only took that medication for less than a year, but the damage it did in triggering more severe symptoms is something I will live with the rest of my life.
The year I turned 28, I noticed lumps on my scalp that were more like scabs that I could easily pick off. My doctor assumed it was some sort of fungal infection, and I was put on multiple rounds of ketoconazole and some topical anti-fungal medications. None of it helped of course.
Toward the end of the year, my knees were very swollen and I had been in significant pain in my spine and lower back. I attributed the back pain to some previous injuries I had had, and the knee pain to the fact that I had a very physical job where I walked a lot. As the symptoms progressed, I found myself needing crutches, and the month before my 29th birthday, I ended up in a wheelchair.
The day I went in to see my doctor and was unable to walk, as my knees looked like they had softballs under the skin, he performed a sed-rate blood test. The results were startling. For those that don’t know, it’s basically a test to determine how quickly red blood cells clump and settle. The quicker this happens, the more inflammation is in your body. The normal range for this blood test is less than 29mm/hr. Mine was 120. The doctor came back in the room and said to me, “You have lot of inflammation in your body”. I looked at him from my wheelchair and asked him, “Really?? What gave you the first clue?” (Yeah, I’m kind-of a smarty-pants.)
Now, up until this point, I have considered myself lucky. I had not had any skin involvement, other than the spots on my scalp. Little did I know how that would change.
At my first visit with my rheumatologist, I was told that there was a three medication approach, prednisone, methotrexate and sulfasalazine. Unfortunately, I am allergic to all sulfa derivatives, so it was a bit of a gamble if the prednisone and methotrexate would work or not. I was lucky that it helped the inflammation, but I started noticing the skin eruptions. Primarily, I get spots on my torso, in places where I am able to cover it with clothing. Though my scalp also has significant issues and I have yet to be able to find anything that helps.
I dealt with this for the next 10 years. I have been on pred and methotrexate for that long, despite the doctors wanting me to get off pred (I currently take 5 mg a day). In 2015, I was informed of a drug study for Taltz, though at the time it was just an IL-17 study. After 4 injections, I noticed significant improvement in my symptoms for both skin and joints. IT WORKS GREAT!!! One problem though… on my 3rd injection, I noticed a troubling symptom with an injection site reaction. I told the research people and they told me it was ‘normal’. I disagreed. Mainly because I am an EMT and know the difference between an allergy and a slight reaction. But…ok… I did my 4th injection and had an anaphylactic type reaction. My leg swelled up so bad and was so hot that I literally melted 4 ice packs in 10 minutes. Needless to say, I had to be pulled out of the study.
Last year, I struggled with my symptoms slowly becoming worse. (I had actually been OK for about 4 months after my last injection of Taltz). In November, I lost my job and was unable to afford the methotrexate anymore. It got to the point where I had to choose, $120 for one medication or $120 for all of the others that I also need.
Sadly, this gave my immune system the opening it was waiting for. My skin erupted into a mass of spots and I am literally covered head to toe. HEAD TO TOE. On top of that, the nail involvement is so bad that I have almost lost a couple nails and it is very painful. I wear long sleeves, because I look like I have smallpox. My neighbor is afraid of me. My mother-in-law told me to put Listerine on it and my father-in-law assumes it’s some weird STD that my husband gave me.
A friend of mine, who is in her 60’s, told me that she had a small rash and was convinced that she had psoriasis. I told her that if she had, she would know by now. It made me angry that she was trying to claim she knew what she had because of the internet. I told her she probably had ezcema. She went to the dermatologist. She has ezcema. I then tried to explain to her what my psoriasis and psoriatic arthritis feels like.
This is what I said…”Imagine a really bad sunburn, multiply it by 100 and imagine it under the skin instead of on top (so you can’t put anything on it because nothing will work.) Now, imagine your skin shrinking like a sweater in the dryer and combine that with the burning. And then…combine that with what it must feel like to roll around in poison Ivy or poison oak. That’s what my skin feels like. When I stretch, like my back, the scales open up and bleed. If I scratch, even lightly, my skin opens up and bleeds. If I towel myself off after I get out of the shower, my skin opens up and bleeds. AND IF THAT WASN’T BAD ENOUGH, imagine having this in your genital area and on your breasts. My scalp is so bad that I’m losing hair and it looks like I have massive dandruff. I haven’t shaved in 5 months because it looks like a mass murder if I do because, of course, the scales get shaved off and my skin opens up and bleeds.”
3 months ago, I started in a new drug study. I found out last month that I am in the placebo group. YAY ME!! Though, there is some hope that I may, in the future, get actual medication when the decide to “rescue” me. We just don’t know when that will be.
But here’s the thing. Even though the doctor also diagnosed me with fibromyalgia last year, and even though my skin is this bad and even though it is hard to walk, sit , lay down or really do anything else comfortably, I have no choice. I am not allowed to sit and cry about it, as I’m seen as ’emotional’ or ‘lazy’. I’m not allowed to take a day and just recover. I have things to do. I have a dog that depends on me. I still have to work, because I like food and shelter. I am still a full-time student, though lucky enough to do that online so my schedule is flexible. I still have stuff to do. The world does not stop because I am miserable. I have no choice but to move forward, one agonizing step at a time.
I have psoriasis. I have psoriatic arthritis. And I have no choice.
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