Two weeks ago I was diagnosed with Lupus. Tomorrow afternoon, I meet my rheumatologist. I have no idea what is going to happen, or if this is truly real; I feel like I’ve been living and moving in a fog since I got the news. All I do know is it seems to be the perfect cap to my life since I turned 55 four years ago.
I love caring for the wildlife who visit me, and I’ve lived joyfully with a veritable zoo - still do! Being a block from the local “pound,” people just dump their pets thinking they’ll be picked up; they’re not. I’ve sheltered many confused, hurting dogs until we’ve placed them; two we kept. We’ll not speak of all the feral cats having kittens around here right now – needless to say, my cup runneth over with kittens and cats!
One day, about 5 years ago, I needed to hang a new feeder and add suet in another. Now, at around 4’11” I’m very “vertically challenged,” so I always carried out a three step mini-ladder to do these change-outs. I’m also a Type A personality, which means I detest making separate trips for various items. So, that afternoon, I started out with a newly built bird feeder, a package of suet, a pair of scissors, and a min-ladder in my hands. What I’d forgotten was I’d let my Border Collie out on his tie-out a few minutes before gathering all my supplies. Einstein was so happy “Mama” was outside with him, that he decided to lead me to the patio himself. In so doing, he literally swept me off my feet with his tie-out. I landed, face first, on the sidewalk and the edge of the raised patio.
I know, without a doubt, that I cracked my hip that day; but everyone was so concerned about my face, and especially my right eye, that no one paid any attention to me complaining about my hip. The insurance company wouldn’t even agree to an MRI. So, I carried on with life and it kept on hurting a little worse as each year passed.
Finally, in 2013, I decided to push the issue with my PcP. She insisted it was my back that was causing the problems and sent me to a neurologist. After X-rays, an MRI, and a Myleogram, he told me I had Degeneratiave Disk Disease (DDD), my disks were crumbling, and I needed surgery, but he doubted that was the issue with my hip. He recommended an orthopedist for that.
More X-Rays and another MRI later, the orthopedist said I needed a hip replacement. He said a “malformed femur” was the big issue. Having had x-rays as a kid with nary a mention of a malformed femur, I think I stood (pardon the pun) vindicated over my “cracked hip” theory!
Long story short, I had four disks fused with what I call a “titanium ladder,” and three months later I had a new titanium hip, to boot. I have so much metal in me now, alarms go off when I step –into- stores!
Nearly two years have gone by now, and I still hurt as bad as ever, but now I can’t get a pain pill to save my life! Granted, it doesn’t hurt as bad to walk on my hip, but I still can’t put my weight on it, and if I sit wrong it still hurts just like it did when I broke it at home right after the surgery (yeah, I broke it AFTER surgery, too!).
The day I had my hip surgery was the last day of work for my PcP. It was a great loss for me. She was one of those rare doctors that formed a partnership with you. She wasn’t a “doctor god” who knew everything, and I’d been with her for long over 10 years. I even had her treating my mother, too. That made caregiving Mom a little easier.
So now, when I was hurting bad enough to push finding out what was going on, I was left trying first to find another PcP. I have a PcP now, albeit temporary, because I just don’t do well with an authoritarian mindset from anyone, but especially not my doctor. She took blood for tests, refilled the script for my “happy pills,” called one in for the dumb muscle relaxants which I told her I can’t take, and referred me for an MRI and to a pain clinic.
About two weeks ago the PcP’s office called wanting more blood for further testing. When those results came back, the office once again called me – at work – to tell me I had Lupus, and to give me the referral to a rheumatologist. I sat there, feeling shell-shocked; my mind swirling with questions, and no one available or knowledgeable enough to ask. All I new of Lupus was it took a very good friend of mine from me some years ago. My friend at work was incensed that the doctor’s office would deliver news like this over the phone AND at the workplace, and I was amazed, once again, at the difference between my old PcP and this one.
Between then and now, I’ve had both my MRI and my first trip to the pain doc. I admit being a bit anxious, due to Tony’s experiences, but I really liked this guy and it seemed like he was straight with me. He said my back had further deteriorated since my surgery; the degeneration is what he categorized as “severe” from my thoracic through my sacrum. He put me on Gabapentin and we’re waiting on the okay from the Insurance on a spinal shot. He admitted he only gave this combo a 40% chance of working. Instead, he said we’d probably end up going to the gabapentin and a “spinal stimulator” with a remote. I’m assuming this is something implantable, judging from the look on his face when I asked if it was anything like a portable Tens unit! However, throughout all of this, with everyone acknowledging there’s no doubt I’m in pain, I STILL haven’t had anyone offer to write me a script for so much as a Toradol!
To add great insult to injury, I work for the Federal Government, commuting 90 miles a day. In some ways, they’re cutting edge. In other ways, some departments operate like it’s the 1900’s where technology is concerned.
The Federal Government, as a whole, encourages Telecommuting when possible; it even has a whole website devoted to it for Federal workers and their managers. My manager, and his, are both all for me working a flexible schedule with most of it via telecommuting. It makes sense, all my work is done on the web, I work off the WiFi network at work because our network is so locked down, and my computer at home is 4x the one I have at work.
The problem lies with the “big boss” over our section. He believes only in “butts in seats.” I guess he figures everyone is trying to get away with something. Talk about buying into the “lazy public worker” meme! So, with this latest medical-go-round, my coworker and I are pushing the telecommute issue via HR and the Federal Employees Union. If that’s not enough, we take it to Congress. Nothing like starting a fight like this when you’re hurting, scared, feeling very much alone, and still not one damn pain pill anywhere in sight! Thank the great Goddess for Mead!
So, tomorrow afternoon I’ll find out more about this latest diagnosis of Lupus. Somehow, I see more than a little synchronicity in this, since I read in Besame’s diary that May is NEID (neuro-endocrine-immune disorders) awareness month.
Oh! and did I mention I live in Kansas? That’s enough to raise your blood pressure daily right there!
Dear Reader, we’re here at this disease’s initial diagnosis and treatment together, you and I. How it effects or exacerbates my other issues, I don’t know yet. But if you’re interested, I’ll take you along on this long, strange trip. Just be advised, I’ll lay odds right now that not one damn doctor anywhere will offer us a pain pill to ease our painful journey!
Cami Says: Pet Frequently for Pain Relief