I have been living with SLE (Systemic Lupus Erythematosus AKA: SLE or Lupus) for as long as I can remember. I was only diagnosed a few years ago when I went to the local walk in clinic with a headache, fever, rash, pain in my joints and a multitude of other symptoms. When they did a blood test they did a test called an ANA or Anti-nuclear-Antibody test, they also did a test for Rheumatoid Arthritis. The ANA came back with a low positive and the RA factor was negative. After MANY scans and more blood tests to eliminate the diseases that mimic lupus such as MS, RA and other auto-immune diseases; I was diagnosed by my family doctor of 30 years with SLE.
At the time I was terrified, confused and relieved to finally understand why the sun felt like it was burning me alive when I was in it, why I had this strange rash on my face and chest and why my body just felt like it was falling apart at every joint.
Since that time I have been seen by several Rheumatologists who have been unable to find the lupus in my blood work but have ruled out all the other mimics as well. A rheumatologist is a doctor that specializes in diseases of the joints, muscles and bones according to http://www.hss.edu/rheumatology-rheumatologist.asp#What_is_a_Rheumatologist I was traveling from my home in Northwestern Lower Michigan to the University of Michigan to see and hope to be treated by the rheumatology department there. They ruled out all the mimics of SLE but refused to diagnose me with it. They sent me to a dermatologist to check the rash on my face which was deemed quickly and without a scraping or sample of the rash as rosacea (http://en.wikipedia.org/wiki/Rosacea) when in truth I had a butterfly rash (known as a malar rash) that resembled this picture.
I received no treatment from the U of M except the advice to stay out of the sun and from under anything emitting UVA or UVB rays (so long tanning beds).
I returned to my GP who was the only one willing to help me. He knew my family history of auto-immune diseases, mom has RA, dad was diabetic, my sister and son have cold urticaria (allergy to the cold), my sister has other allergies as well; I have several other family members with RA, allergies, fibromyalgia and other auto-immune diseases. It would not be unexpected for me to have RA but rather I am the only one with Lupus so far in my family.
In the years since the first suggestion my Lupus has begun to affect my kidney's and just over a week ago I had a kidney biopsy. I am hoping to find out the results tomorrow when I see my GP and my hope is that they do find lupus involvement in the biopsy. I know that sounds horrible to wish for but you have to understand, its not showing in my blood any more which happens in 3% of lupus patients; if they don't find it there I would have to have a spinal tap or even a bone marrow biopsy in hopes of finding the eluding lupus diagnosis that will make a rheumatologist pay attention to me and treat me.
I have been on so many medications ranging from anti-malarial drugs to steroids and chemotherapy. I was on the humira shot for a while and it worked but the rheumatologist threw a fit about it and wanted me off it. I have now been off all but my anti-seizure medications, narcotic pain pills and anti-anxiety medications since August of this year. I don't mind saying it has been hell on me.
I now can barely get out of bed on my own, the joints in my feet hurt so bad I cry when I walk. My joints become inflamed and hot to the touch. I spent 5 minutes out side in the cold yesterday and the tips of my fingers were flaming red, hot and hurt/burned, even though I am not supposed to have Raynaud's Phenomenon (http://en.wikipedia.org/wiki/Raynaud%27s_phenomenon) according to the very rude rheumatologist I have seen recently and locally. He basically told me every thing I go through is in my head and that there is nothing wrong with me. When I started to question him about the 3% of lupus patients he got mad and told me to let my GP treat me and walked out of the room.
At this point I will have to sign off for a bit as my fingers are not co-operating with my brain and the lupus fog is threatening at the door. I will go into more detail about the fog in another post. For now, Happy New Year and I hope you all have a wonderful, safe time while celebrating. 2012 I hope brings great things for everyone, including my health and my team of doctors to help me be more capable of doing the things I enjoy, like writing on my blog.
Until next time....peace, love, less pain and more spoons to you all, especially my Lupus brothers and sisters.
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