For as long as I can remember, writing has always been my therapy. I’m not really sure why it started or how old I was when it did, but I think it had something to do with having a lot going on at such a young age and not knowing any other outlet to express what I was dealing with, since looking to my left and right, there was no one I could relate to. For those of you who are only just meeting me, I was born with quite the unique auto-immune disease. It wasn’t really determined that anything was wrong for the first year or so of my life, because the way my parents figured out I was in pain was by the way I screamed during diaper changes. I think there was a strong component of screaming generally in just about everything I did (not unlike me at 30 years old…), and then when I wasn’t walking with the rest of the kids my age, I was evaluated and misdiagnosed as having JRA (Juvenile Rheumatoid Arthritis). I had a Rheumatologist at the time who wanted to give me gold shots, which thankfully scared the shit out of my parents, and after getting a second opinion, I was diagnosed with the disease I called myself for the next 25 years: Sarcoidosis.
If you are reading all of this and thinking, “who cares what the fuck she has – these conditions are hard to pronounce and I’ve never heard of them, anyway,” I have to say that you aren’t so far off from the way I was treated for most of my life by hundreds of doctors I had the “pleasure” of meeting. I spent many days sitting in doctors offices, getting poked and prodded and put on display at teaching hospitals for residents and students to gawk over. It wasn’t until I was about 26 that I got my last (and hopefully, final) diagnosis, which is known as “Blau Syndrome”, which is really just a fancy way of saying, “rheumatologically, you never had a chance.”
The way my medical condition and I “hang” is basically by planning out every second of every day in every way possible; you know, so I can be a normal spontaneous individual. I have arthritis in every joint in my body, degenerative osteoarthritis in pretty important spots like my knees, hips and spine, orthopedic deformities (which I actually think are unrelated and just an added bonus to all the fun…), and eye disease (Uveitis) to round things out. The biggest problem I face is managing the inflammation that is caused as of a result of the arthritis, and when you have it every place you possibly can in the machine you’re living in, it can be pretty difficult to figure out how to how to make it through the day successfully, let alone accomplishing basic tasks like getting ready for work or washing dishes.
There are many layers to my chronic illness, and as a result, many layers to me. Rather than sit here for the next 45 hours and type out a rough history of the craziness I’ve been through, I really just meant this post to be a mic check, if you will. You know, to see if this thing is on and if anyone is interested in staying for the live show. It’s more in my nature to reference specific events in my life as they relate to how I’m feeling on a certain day or how I can tie them into a point I’m trying to make. It is my sincere hope that this blog provides some source of comfort for those who have been sick their whole lives or recently diagnosed alike, and for those who aren’t sick, to just really consider this: waking up every day with an illness that won’t ever go away was certainly not my choice and is not the choice of others who are the same position. I do not need you to feel bad. I do not need pity. I am a strong, capable, grateful young woman who is appreciative of every good thing I have. But compassion seems to be a lost quality in many people I meet. All I ever want is to be understood.
But will you take the time?