I will call myself “Anna” to protect my income, dependent upon my image and name, not that I am famous. My AS went undiagnosed for 20 years (I am in my 40s) and allowed cancer to form in my body from an alleged autoimmune malfunction, according to my oncologist who is one of the best, worldwide.
While I am relieved to have a name for this — learned just months ago — to go with the agony that was thought to be lupus for a long while, the AS is worse than cancer, radiation & chemo combined. I am currently being tested for caudia equine (horsetail spine). My worst problem is spinal pain, stiffness and spinal migraines as well as joint & muscle pain with immobility. I also have been diagnosed with fibromyalgia that my current Rheumatologist thinks was the mistake leading to my not being diagnosed for so long. I question if I have fibromyaglia in addition to all this as others have mentioned on Faces of AS. I take Cymbalta, Celebrex, Sulfsaszine, steriod shots, & Provogil, and they all have helped a varying amount of 30-60% for the last nine months. I would like to leave the house for more than one hour a week and not have to recover for days. I just missed a friend’s funeral from this. Any pointers? I cannot take drugs that lower immunity while on chemotherapy and probably not thereafter. I’ve asked for physical therapy with no comment yet from my rheumie.
And just as many of you have shared, I have been discriminated against at three ” jobs” for going to doc appointments, being out sick and for applying for short term insurance disability. At any rate, chemotherapy does make AS significantly worse, so get checked and definitely biopsied if you show signs of cancer. Never have the frame of mind that just because you have one disease that the odds are than you will escape another.
Lastly, but most significantly — I do need support– just as we all do. My mother has literally, publicly disowned me for my poor health over most of my life. Friends can be fickle now, too.
I’ve never talked to our Lord so much. He is my constant. May He give us double for our trouble.
Godspeed to all.