It happened to me.

I am a 62 year old female who was diagnosed at 12 with psoriasis, treated with topical cortisone creams. At 32 I was diagnosed with Psoriatic Arthritis. Woke up one morning and could barely move, hurt like hell to take a deep breath. Saw my primary care doc who said he suspected PsA. Onto Rheumatologist and he said no definitive tests but assumed it was PsA. NSAIDs prescribed.
Move to Birmingham from Las Vegas. Find doctor, referred to rheumatologist, continue with NSAIDs, 3 more years and move to Houston. New docs again. New rheumatologist prescribes methotrexate. Do well for awhile, increase dosage. Liver enzymes elevate, reduce dose.
Change insurance, new doctors again. Try one rheumatologist, didn’t go back. Got referral to another who I was with till he retired 3 years ago. He started me on biological immediately after approval. Went through Enbrel, humira, kinetet and have been on Remicade forever.
About 4 years ago developed aura migraines. Four months of CTs, CTs with dye, MRIs, MRIs with dye and approval for cerebral angiogram. Don’t wish that on anyone. Diagnosed vertebral artery dissection. Neurologist determined to figure out what caused this after 10 days in hospital to get me on anticoagulant therapy. (Heparin with warfarin). 24 vials of blood for individual blood tests, 3 days after hospital release. Checking for antiphospholipid syndrome. Sent to hematologist. Tests again in 3 months and again 3 months later. Confirmed. With history of second trimester miscarriages and blood work, determined primary APS. Coumadin for life. Yeah!
Wouldn’t be so bad except for the four surgeries I’ve had in the last 3 years. Back, both knee replacements and unplanned hysterectomy (stage 1 endometrial cancer). Having to get off of Coumadin before and back on after surgery is a mess. Must switch to lovenox shots. But instead of 5 days to get back on at required blood levels, takes me 20-25 days of shots and pills. This means about 2-3 months between infusions of Remicade. I can tell a huge difference with the delay between infusions. I have my infusions every 6 weeks. I’m 5 weeks late again because if respiratory infection and on antibiotics for 30 days. Can’t wait till tomorrow so I’ll feel good again. I was diagnosed with diabetes 3 months ago, so one more thing to add to daily chores.

I still feel lucky that I have a very supportive hubby, and a daughter who lives here, too. My sons live away. My friends are very understanding, too. I try to focus on the good stuff and ignore the pain. I hate asking for help, but sometimes I give in. I retired 3 years ago and that has helped considerably. I can sleep in and get moving at my speed. I try not to nap, messes with my sleep. I’m alive, feel good most days, and can get around by myself.

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