It’s been a long time since I’ve posted updates. I didn’t realize how the time had gotten away. Thinking that surely 2019 would be better than 2018, I felt comfortable to wait until 2019 to begin updates again.
And then 2019 actually happened…
It started with closing out 2018. The best thing was Chris graduating with his Master’s degree, I am so stinkin’ proud of him. Thoughts of a New Year held the promise of turning pages on this chronic journey and opening new chapters, writing new chapters even, of less pain, less doctor visits, less fatigue and battle-weariness. So I closed out 2018 with a few GI issues, a little surgery for the ‘ole esophagus, and a hope that next year would be different.
Oh, it was different alright.
Right out of the chute, in January, I had eye symptoms. Thinking it was simple pink eye, off we go to the eye doctor to get some antibiotic drops. ‘Cause that’s what you do for pink eye, right? No, no it wasn’t pink eye, it was my first ever RA/Sjogren’s flare in my eyes. What I didn’t know is that sometimes Sjogren’s can go rogue and cause eye issues which, if not addressed quickly, can compromise your vision, even to the point of losing it. So it was a stat head CT to check that eye socket, followed by tons – TONS – of steroids to try and save the vision. The steroid taper was long, almost 2-1/2 months, and was high-dose for many weeks before we started a taper. I had to go to the eye doctor every 2-3 days for weeks, as well as seeing my Rheumatologist several times. About this time, I had obligated to play for a friend’s choir rehearsals for a project he was working on. The flare happened just before the 2nd rehearsal and I remember being unable to read my music that night. I’ve read music since elementary school and while I’d prayed for God to please spare my hands, it honestly didn’t occur to me to ask Him to save my vision. I sat at the piano knowing there were lots of mistakes made that night and hoping my dear friend didn’t notice. I’m sure he did. I cried itty-bitty quiet tears at the piano and then wept on the way home. That was a very sad evening, a feeling I won’t forget.
Thankfully, by taking the meds, resting my eyes (no computer, no TV, no nothing) and listening to my docs, we got in front of the eye flare, but not before compromised vision along with some driving restrictions that still remain today. The realization that your vision is blurry and depth perception is all out of whack will make you not want to drive. For a while, I was honestly afraid I’d hurt someone.
After two months of no or limited driving, I finally got the okay to begin driving a bit more in March, and even go to the Wellness Center, the gym where I get some exercise in and use the therapy pool (which feels really, really good, by the way). The second or third time in, and snap! there goes my first RA stress fracture. Of course, it had to be the 5th metatarsal that doesn’t heal well anyway, right? I honestly thought I’d just tweaked my foot somehow getting dressed for the pool and continued my pool therapy and even walked for 10-15 minutes on the treadmill. But the foot hurt and I went on in to get it x-rayed. Sure enough, it was broken, and it wasn’t looking good for easy healing. Years of RA and all its treatments had done a number on my bones, and this was never more obvious than when that first stress fracture happened. If I was to heal this bone, I had to get completely off my foot.
I remain in the occasional boot to this day (since early April!) but after months of no weight-bearing and finally a bone stimulator, it has started to fuse. I have “baby fusion” haha It’s been during this time that I finally submitted to using a cane, walking sticks, and even a motorized chair for ambulation. This was a very, very difficult mental step to take. But I’d been stuck at home for so long that I was going stir-crazy, so I decided that it wasn’t worth my mental health to avoid some sort of walker or cane. Nevermind the inability to go on any hikes this year, which Chris and I love to do, if it meant I could just get outdoors and walk around in my yard, then I just needed to do it. So I did. Submission was actually quite liberating.
Throughout the long year of not walking and trying to heal this foot, other issues arose like inability to swallow (again), which means the Sjogren’s is barking. The neck fullness was obvious and after ruling out thyroid cancer, salivary stones, and other neck issues, all that was left was Sjogren’s.
Then there was the pleurisy from RA still doing its thing. I’ve had pleurisy before, but this pain was in a different place. We went to the ER (actually on Easter Sunday) thinking I had some sort of kidney stone. But it was pleurisy of the diaphragm. I didn’t even know you could get pleurisy there. The Rheumatologist nailed it and while the usual course of treatment is high-dose steroids, that wasn’t an option for us because of the bone fracture healing thing. NSAIDs can interfere with bone healing too, but we really didn’t have another options, so tons of NSAIDs was the prescribed route. After a couple of weeks, it settled down.
By this time, I’d had countless more tests and CT’s and even more doctor appointments. And I most definitely had that prednisone weight gain. It was awful. Honestly, there were so many things going on simultaneously that I often wondered where in the world the brain power would come from to process it all. Mind you, the usual fatigue and pain definitely continued, now with everything else piled on top. It was simply overwhelming much of the time.
Fast forward to September and October, add in the never-ending insurance battle (I can see why doctors tire of insurance issues), add some new symptoms of neuropathy likely from Sjogren’s, another esophageal stretch coming down the pike and a little shoulder surgery from RA over many years, and I’m good to go for the rest of the year. We’ve ruled out strokes causing the numbness and neuropathy-type symptoms, so that is good news. Pacemaker is solid as a rock, nothing is amiss cardiac-wise. I remain very fond of my little battery pack and sometimes, seems that’s the only thing that works like it’s supposed to anymore. Anybody relate???
Yes, 2019 has been quite the rough year. While I’ve certainly missed out on the many things I wanted to do, like hiking with my new granddaughter, going to Dollywood, and hiking new trails in the Smoky’s, I’ve been able to tap into personal growth that I’d not experienced before. I’m more sensitive to those with walking issues and much more aware of how handicapped-accessible buildings and streets often aren’t well thought out. The ongoing struggle against loneliness has forced me to reach within myself to find that grit and grace to rise above the isolation. Perhaps most of all, I’ve been in situations where I truly had absolutely no control. I’d done all I could possibly do, and the outcome just wasn’t up to me. This has forced trust, which I must say has been a battle throughout the years of feeling betrayed by your own body. Letting go of some of these things has been very liberating and I’ve enjoyed being freed up in this way.
Many questions remain unanswered, like continuing current meds or changing course, what about returning to work, etc., and I’m honest to say, I don’t know the answers. I’ve analyzed it 100 times ’til Sunday, and there just aren’t clear-cut answers much of the time. But I will say, it’s in the tension of the unknown and the need-to-know’s that I find the peace of trusting a God who does know the answers. The answers, the timing, the why – the everything about this crazy journey. So for the purpose of true, deep-end trust, I can find the good in this crazy year I’ve had. And I praise Him for it.
Keep those prayers coming, and I promise to write updates more often.
Here’s to a blessed closeout of 2019 and onward to a glorious 2020 coming soon!