Saturday, July 11, 2009

Auto-immunes... are they living hell or are we lucky to have such a muse?

Yesterday, I was perusing my Etsy store and came across a wonderful lady who has fibromyalgia. As weird as it sounds, I was excited that she bookmarked one of my shrine necklaces. You see, I have an auto-immune also - two to be exact. I have lupus (SLE) and secondary Sjorgren's.

Many people, even some of my friends, believe that auto-immune diseases are "in our heads" and not a real disease. If that is so, could someone please tell my muscles, skin, swollen fish eyes and other unmentionable parts of my body that tend to become inflamed?

I went to doctor after doctor and at first the consensus was that I was "sleep deprived, sex deprived and crazy." Another WRONG diagnosis was that I had severe food allergies. The allergist explained that I all of a sudden just "became" allergic to all foods except milk, rice and fish. I was not allergic; therefore, I became severely malnourished and lost muscle control.

When I went to my GYN for an issue that I thought was unrelated, he immediately suggested Sjogren's. He consulted with my family doctor whose office is across the large shared waiting room and he agreed. I was quickly referred to a rheumatologist where after a few short tests, I was officially diagnosed. However, Sjogren's is rarely a primary auto-immune.

My rheumatologist scheduled many tests to rule out diseases such as ALS, Parkinson's, MS and a few others that I can't remember. After the battery of tests, I was actually relieved to find out that it was just lupus.

I am learning to live with the two auto-immune diseases. It is hard, but my art helps in the sanity department. When I am feeling isolated and alone, I can literally isolate myself in my studio and create. The hardest part of learning to live with an auto-immune is that since I LOOK healthy, I must be healthy. Since I am not in a wheelchair, use a walker or carry a cane, then I must not be in constant pain. Since I don't have big purple lesions and bright red skin, then my skin must not hurt to touch. Since I am not coughing and vomiting, I must not be in discomfort. This is how I had to explain it to my children: I am 'inside-sick' because people can't see or hear my illness, but it is real just the same.

This all brings me to the auto-immune shrine. I created this shrine so people can SEE my illness. Perhaps this will make it all the more real to them.

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