From the outside I look like a normal 30 something woman with a career, great friends and family and a good life. My inside does not tell the same story.
I was a relatively normal heathy girl growing up. Bump and bruises were a given based on my obsession with being equal to my two brothers. Tomboy is an understatement.
A few years ago, that would change when I got news that changed my life. Completely.
I was diagnosed with psoriasis, a GENETIC immune disorder that really stems from an overative immune system. My dad was the carrier and I was the receipient. Basically, my immune system attacks my healthy skin cells like it's an infection so instead of taking weeks for new skin to regenerate, it happens in days. So I went from having this gorgeous skin to having quarter size patches on my legs and back. And it really hit hard on my scalp and forehead. This was devastating. To my Ego. I was so embarrassed and went into a depression. All my life, my legs have been my "thing" and now I didn't even want to wear shorts or capris and I didn't for many years. About 3 years later, and two doctors later, I was able to get on a good drug regimen and my psoriasis was "under control". This would not last long.
I started having some shoulder and wrist pains and after numerous incorrect diagnosis (including me wearing a wrist brace for 8 weeks), I found out that I had developed the arthritits that comes with the psoriasis. It's called psoriatic arthritis (PsA). It's very similar to rheumatoid arthritis except the cause of mine is my psoriasis. This caused a lot of pain throughout my body. Constant, chronic pain. Pain that would keep me in bed for hours. The doctor put me on a biologic which had to be infused in me through an IV, once every two months for 4 hours. and prescribed a weekly dose of steroids. He also offered a anti-depressant because he said patients with chronic pain tend to have a higher chance of dealing with depression. I laughed it off and thought he was nuts.
I discovered that what the doctor said was true about the depression. A few days later when I was alone and taking everything in, I started crying. I cried for about two days and then I told myself that this was real. It happened and now I have to survive it.
Immune disorders are not uncommon but they are so misunderstood. You can't see my pain so it's easy to dismiss but it's real. I know. There were and have been days when I am in so much pain, I can't move. Or days when I feel so fatigue that even after an 8 hour sleep, I'm still tired. And there a lot of days when my hands are so swollen that I can't hold my hairbrush. I don't cry or yell, I just move on.
A side effect of the weak immune system is the constant flow of sickness. A common cold turns into the flu or pneumonia for me quickly. I'm slowly learning to accept this and be more proactive in my health. Lesson #1.
It's a constant struggle because I want to be who I was when I know that I'm not. I don't want pity or sympathy, just a little understanding. That even if you can't see someone's sickness, don't belittle it or think that what we feel isn't real. It is. Just be there. Don't try to fix it or us because there isn't one. Just be there. That's all we want.
My family and friends have been supportive and often ask me how I do it? I laugh because what other option is there? I tell them that as angry as I was when I was diagnosed, I'm thankful that it's not worse and that there are drugs to treat it. I don't enjoy my weekly shots or the impact that those shots have on my body but I know that I'm better off than so many other people. And for that I am grateful....everyday. Lesson #2.
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