I was going to name this blog “Up bone creak without a paddle (or a cure)” but honestly, WAY too much typing for RA fingers, even though I though it whimsical and clever 🙂 and not a user friendly web address, so BoneCreak.com it is.
This is my basic story of getting diagnosed and a familiar one to many people with an Autoimmune Mobility Disease.
After my wonderful Primary Care doc suggested I explore seeing a Rheumatology Specialist, having complained often of pain and aching in joints, I was sort of (depending which Doctor or Rheumatologist you ask) tentatively diagnosed with Rheumatoid Autoimmune Disease In Remission (RA : Rheumatoid Arthritis) in the early 2000’s, but as pain persisted, other weird symptoms of odd stuff not going away, etc or getting worse, sought more opinions, answers, information and just got frustration, more than anything.
Because I’m a persistent little bugger, a year or so later, tried a 2nd & 3rd (and more) opinions from different Rheumatologists, even more clueless opinions from other specialists & doctors. They came up with, everything from “seek counseling” and prescribing anti-depressants to, 2 of 3 RF (Rheumatoid Factor) tests coming back weakly positive, one negative, (that I was made aware of anyway), the verdict from one Rheumatologist was, “no, not RA, maybe Fibromyalgia” another said “you’ve got a weak sero-positive (Rheumatoid Factor) test, not enough to go on” … and by another.. “maybe RA and oh, you have a Lupus marker, but I don’t think you have lupus, but definitely Fibromyalgia, here try this new drug, but be careful, it’s addictive”. Ow Kay then ….
I gave up at this point (never took the tablets prescribed) and trundled on with my life, still pretty ok, but experiencing increasing bilateral pain in joints, insane amounts of upper resp infections, a lot of fatigue, repeated steroid injections in joints (hello, anyone getting a hint to maybe refer me for a Rheum consult… maybe?) and tried eating differently, personal trainers, chiropractors, PT, voodoo chants (kidding), even though I was already a very organic, low meat eater with an aversion to chemicals in personal products, around the house etc, & shunned processed or fast food. Nothing helped. Zip, Nada. Nuttin’. Some things I tried made it worse.
After 2008 when I had a traumatic & unexpected open partial nephrectomy (a simple adrenal gland laparoscopic removal to cure my Conns Syndrome, turned into a huge open surgery taking 20% of my kidney), a brutal recovery and a lot of stress in the following 2 years saw me showing increasing signs of being painfully disabled with no idea why. I was confused, blue and getting angry. NOT recommended for stress levels.
After re-visiting the best of the Rheumatology Specialists I saw years ago, the first diagnosis turned out to be right but now finally roaring out of remission with some extras on the side once I was fully tested, x-rayed, MRI’d and drained of most of my blood (felt that way, anyway). I was showing X-Ray joint damage in hands, feet, a really messed up right wrist bone, with a strong Lupus marker in tests, together with symptoms fitting, I was also diagnosed with Sjogren’s Syndrome, Fibromyalgia and now carefully being watched for Lupus with the old Rheumatoid Autoimmune Disease at the top of the list. So began my journey with skeery medications, injecting myself weekly, wondering if a sinus infection could kill me, lots of procedures, drugs, heart & lung problems, hospitalizations and a realization that, my life as I knew it was over.. because there’s no cure. Day-Um !
The autoimmune inflammation diseases community online, is really awesome, so why yet another blog when there are so many wonderful ones out there ?
Well, sometimes you just wonder if you have something to contribute and using a creative outlet like this, may just help me as a research nerd and outspoken advocate, help myself and maybe someone else with some positive, good quality of life things like, tips, insights, research, products finds and ideas, with a bit of humor and optimism… and a way for me to express how I feel about doing ones best to move around life’s obstacles, instead of banging into them too hard (because, seriously, that HURTS when you have RA).
Having my closest loved family member diagnosed with MS is also a big motivator for me (also an inflammation disease, but neurological), so we’ll see how this adventure goes.
Thanks for stopping by !
Chez (pronounced Shezz)