There Is Something Wrong
Last updated: May 2023
I began experiencing headaches in fall of 2013. Suspected sinus infection, so antibiotics given, headaches did not go away. In December, I tested positive for MRSA in my nose. One month of antibiotics and headache was unrelenting and horrible. My PCP was lost, but runs tests, and immediately starts steroids with a referral to a rheumatologist.
The revolving door of doctors
The Rheumatologist started me on Imuran, and stay on steroids. There was some improvement, so the rheumatologist releases me from care. Guess what happens next. So now I see a neurologist and back to the rheumatologist I go. He doesn't tell me much, and the dx is mixed connective tissue. Change rheumatologists and found a great one in Tyler Texas.
My journey to disability retirement
This whole time I was trying to work, but I would be in terrible pain, fevers, etc. My neurologist told me I would not be able to work anymore. So I applied for disability retirement from HHSC Tx. Also applied for RSDI. Took a bit of time, but was approved for both.
At this time my migraines are pretty well controlled. I still have lupus flares, which present themselves differently each time. Summers are tough. I can't handle heat or sun very well.
Juggling multiple conditions
My PCP just diagnosed chronic kidney disease last week. Such wonderful news. I made an appointment with rheumatologist on Monday to find out what to do.
I am caring for my husband who has parkinsons and uses a wheelchair due to balance issues and 3 major falls with fractures. My social life is kaput. This year I had rotator cuff surgery, last week, carpal tunnel. Haven't ridden my mares in months.
Which resource do you think is most urgently needed in the lupus community?
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