Probably everyone agrees that life will throw us a ton of curves. We know life gets crazy, and perhaps a chronic illness life is its own kind of crazy, right? But even I could never have predicted what 2019-2020 would have in store for me and my RA journey.
Rheumatoid and Eye Symptoms
While the biggest issue of 2019 was probably starting the orthopaedic chapter I’ve been on, things didn’t start there. Many folks think RA affects our bones primarily and perhaps that’s true. But there are other things to think about with rheumatoid disease (and its cousin, Sjogren’s Syndrome) and 2019 brought me my first eye flare and my first bout with pleurisy of the diaphragm.
It started one weekend and honestly, I thought I had pink eye. The treatment for pink eye is antibiotic drops, and you can only get those through a doctor, so off to my trusted eye doc I went. Seemed like a lot of hoopla to get simple eye drops, if you asked me.
Boy, was I in for a surprise… no eye infection. No pink eye. Instead, we had an RA flare in overdrive in my eyes. I had no idea. I was sent straight to my rheumatologist who ordered a stat head CT and I learned how Sjogren’s can go rogue and take out your eyesight in precious little time. My vision was so blurry. It was awful. I would be placed on total driving restriction, as the blurriness would fall in the “legally blind” numbers. I lost count of the tears I shed.
Besides eye issues, there are the ongoing issues that still have to be dealt with, like GI stuff and “pop-up” RA flares. 2019 was my first experience with RA pleurisy that involved the diaphragm, and I can promise you – there is no pain quite like that. These ongoing issues kind of flow underneath anything else that’s going on, so it can make one absolutely crazy dealing with it all. It’s so time-consuming and such a schedule hog. There’s no way to really schedule anything when RA shows up whenever it wants to, uninvited.
Rheumatoid arthritis and bone health
It started with a simple act of going to the gym to swim in the arthritis pool. Being in the warm water is a happy place for me! My right shoulder had been bothering me, but somehow I tweaked my foot putting on my bathing suit. It hurt and felt odd, but I was simply getting dressed in my suit, so figured it was nothing. I continued to the pool and later to the treadmill to walk a little. But the pain was great enough that the smarter thing to do seemed to be getting on home and icing the area. When the evening came and the pain was still there, it was my astute hubby who said, “Y’know… you probably ought to get that looked at…” So off I went to the ortho clinic. Diagnosis: Break of the 5th metatarsal. I would later find out this is one of two break spots notorious for not healing well. Oh, and the shoulder pain continued…bone
This foot break took upwards of 9 months to heal and most of 2019 was spent sitting in a chair, limping along in a boot, on a cane, with a walker, in a wheelchair – or some combination of them all. Coincidentally, the previous shoulder pain continued in the background of all the foot issues. 2019 became the year I got educated about the effects of rheumatoid arthritis and Sjogren’s on your bones. In the end, I’d have two GI surgeries in 2019, a shoulder surgery, numerous CT scans, x-rays and ultrasounds, infusions, a few ER visits. Oh, and I quit counting the number of doctor visits at 43. It was crazy. I wasn’t sure about anyone else, but I knew I was ready for 2019 to be over, as in o.v.e.r. Surely 2020 would be a better year and I could re-claim the spring and summer that was snatched away by RA and autoimmunes.
RA in 2020
And so, 2020 swooped in and early spring brought more bone breaks and more surgeries. Xrays showed that at some point along the way, I’d broken a bone we didn’t even know about. The ortho clinic staff knew me by name. My first name, even. Before the summer would arrive, I’d have 4 more breaks, a few really bad sprains, and two more surgeries. Then where were countless slings, boots, time on the walker and cane, and even a return to the wheelchair for a bit.
Despite my best attempts, I had to let a lot of things go. Things I’d really, really wanted to do. Things I was determined to re-claim after 2019 stole them from my hands. Everything at home fell to those around me. It was often tense. One of the hardest things about this journey is the effect it has on those around me. Rheumatoid disease seemed to be running the show.
To say I became frustrated and discouraged would be quite the anemic description.
The chronic pain journey now, August 2020
Fast-forward to now, and it’s August. I’ve just had shoulder surgery and after a rough 3-4 weeks, things are getting better. The pain has eased up a bit and I can get some sleep. I even made a sandwich last week with just one hand. (That seems mundane, but my RA friends will know this really calls for a celebration!)
I’m very hopeful that this is the last bone issue and surgery for quite a long, long time. ‘Ever’ would be nice. Meds for rheumatoid have to be held when surgeries are done, so the window for “pop-up flares” is now and I sense that a few of these are barking at me a bit. All that stuff that “flows underneath” still goes on and still has to be addressed. As I’m writing this, I’m watching the clock for a visit with my GI doc and then PT.
Honestly, it’s likely that 2020 has thrown all of us some crazy surprises and curves. With the Covid-19 pandemic, many of us are suffering in ways we’d never imagined. Sure, my health has taken some major dings of late, but we see crises in so many areas – health, finances, job loss, depression, suicides, cultural tensions, attacks on our faith. My prayer is that we will all heal, personally and as a nation of brothers and sisters who need each other and who are supposed to love each other and fight for what’s right. May we all see improvements in whatever our challenges are. Soon, and very soon.
Thanks for keeping up with my story. And most of all, thank you for your continued prayers. Rheumatoid arthritis is a long journey and it’s all uphill, sometimes it’s utterly exhausting. I’m most encouraged not when the hard times don’t come, but when the thoughts and prayers of those around me do come.