First, a big thank you to the people at Healthline for their kind words, and including ∞ itis in their list of Best Rheumatoid Arthritis Blogs of 2014. Thanks also to those readers who continue to follow despite my sporadic posting of late.
To those who emailed and asked how I’m doing, well… I’ve been better, but I’m on still on the top side of the grass. Our family has now met our annual $1,500 deductible on two family members.
My shoulders have been bothering me for quite some time (even worse than usual), and then my back joined in. For a while my back was so bad that the muscles would spasm any time I moved. The first time was quite scary, and I wondered if I was having a heart attack. Fortunately, that was not the case. The pain, however, made getting into and out of bed impossible, so since December I’ve been sleeping in a recliner. With flexeril and rest the muscles finally stopped spasming, but I still have not been able to sleep in my bed.
Based on my discussion with my rheumatologist’s PA (which is a whole ‘nother rant), I thought the treatment was going to be a referral for PT and a quick steroid taper; then the MD came in and decided that all we needed was spine x-rays. I swear that doctor has ordered more x-rays than I ever thought I’d see in a lifetime.
It doesn’t seem to be asking too much to feel well enough to live my life with some semblance of normalcy. Rheumatologists tend to focus on different things than I do. She’s wondering if what I have is PsA instead of RA (which I have thought from very early on), and recommended a biopsy of my rash. When I reminded her that the dermatologist said a biopsy isn’t necessary because it’s definitely nummular dermatitis, not psoriasis, she suggested a second opinion. However, it will not affect my treatment one way or the other; it’s just to satisfy her academic curiosity.
Umm… No. All procedures have risks. If she wants to foot the bill to satisfy her curiosity, then we could discuss the risks involved, but I’m not going to take on additional risk and expense when it won’t make any difference in my treatment.
This means that I left the rheumatologists office still feeling crummy, with orders to be irradiated again, and quite frustrated about this entire situation. My family physician saw me a week later, injected one of my shoulders with kenalog, ordered an x-ray (!) of said shoulder, and wrote a referral to PT. Interestingly enough, the shoulder injection made my back feel better. The physical therapist suspects that the back pain is due to compensating for my shoulder issues.
Thanks to PPACA, my insurance is so fussy about PT that there have been numerous complaints filed with the insurance commissioner. I can only have five or six visits, then have to have a new evaluation and wait for them to decide whether or not to approve another handful of visits. This means that every time a person starts to make progress, they then go two weeks without PT, negating all benefit of the previous visits.
It’s all quite frustrating. In the past, three or four weeks of PT were all that was needed for me to feel much better — at least enough that I could be released to do exercises on my own at home. Now, my shoulders hurt worse, and in more places, and the biceps have both started hurting, too (which the PT says it because the biceps are doing work that the rotator cuff muscles should be doing). I’ve even started having trouble with one of my elbows, which makes the PT wonder if something is torn. I really don’t need the expense of an MRI on top of everything else!
Apparently, the fact that I’ve been doing some gardening despite “claiming” that my shoulders hurt is an issue for the insurance company. It’s not like I’m swimming or rock climbing! I’m making sure that my family will have food to eat!
Despite RA, I still have a life. My two sons still at home played basketball this winter, followed by baseball this spring. Now the high school is gearing up for summer basketball and the baseball coach wants the kids to play $500 summer ball which conflicts with $150 basketball. My younger son is also playing on a year-round select basketball team. If you think that means I have been driving from one sporting event to the next and wondering if I need to get a job to pay for all this, you’d be right. Due to these sports, somehow I also ended up in the high school booster club. Last season there were some decisions made with which I disagreed, so now I’m juggling meetings on top of everything else, trying to have a say in what happens.
And life goes on. I’m still figuring out how to cope, how to do things with the least expenditure of energy (so that I’ll have energy left for fun things like watching my kids’ sports teams), and how to have a full, un-whiney life with RA.