I meant the part, “in sickness and health,” so when my husband was diagnosed with lupus, the challenge was on. I could have used some experienced guidance; I felt so alone and lost. This is for the second person in the disease so that at least all of it won’t be a surprise.
The diagnosis challenge
Lupus being a “woman’s” disease, his symptoms of an odd facial rash, vague constant aching, and easily dismissed fatigue never added up to lupus. Twice he was actually treated for syphilis. Years and many doctors later, he visited a dermatologist for the rash. That doctor recognized the blemish across his nose.
Medicine’s side effects
His rheumatoid arthritis doctor started him on Prednisone and Plaquenil plus a daily aspirin. The medicines hold his lupus in check but require Prilosac.
Fighting without an immune system
In the forty-eight years since his diagnosis, he has almost died eight times – not from lupus.
*He accidently stabbed himself, and an infection nearly took him.
*He’s had two episodes of periocarditious, water in the sack around his heart. He said his chest felt like it was being squeezed.
*He suffered three heart attacks. The first two brought on by the extreme stress on his body. The third was caused by a reaction to the plasma being pumped directly into his heart. He was on a dialysis machine to remove dead white blood cells. By the time his condition was identified as TTP, Thrombotic thrombocytopenic purpura, his white blood cell count was nearly zero. We thought he had a persistent flu until he threw-up blood and pooped blood.
•All of these conditions are common to lupus patients. Watch for extremely severe symptoms.
What you can do to survive
•Accept that they can suffer all the usual sicknesses common to healthy people. Try not to panic.
•Research all the ailments that come along, so you know what to expect, when to go to the doctor, and what to ask.
•Ask questions about all the treatment they receive; what will the treatment accomplish; what are the adverse effects; are there warning signs of the treatment having a negative effect?
•Insist on staying with them when you can.
• If something doesn’t seem right, speak up for them.