I set a goal awhile back that one day, I’d like to throw out the first pitch at a Colorado Rockies game – not like I am now, wrecked by pain and all the emotional feels that go along with it – but pain-free.
The perfect pitch. Me back in the game. That goal feels farther away than ever right now.
It has been a tough couple of weeks. The pain in my upper arms and upper legs has continued to edge up to new, relentless levels. The muscle cramping is much more regular and intense. The pain in my spine (that’s new since I had COVID in March of 2020) makes every little bump in the car or on my scooter feel like an electric shock up my back. Emotionally… well, I’m ticked and bummed. I just don’t get how my body can be so against me when I’m so proactive in working to relieve this pain and heal (even if I heal only a little bit, it would be a victory).
So, what have I done to be proactive since my Bridge Health Recovery Center experience? On the medical front, I’m waiting for lab tests that were drawn a couple of weeks ago to come back. The team said that I am mildly positive for something called Sjogren’s Syndrome, my complement Cq1 levels are low and C4a levels are high. I really have no idea what all of that means. They did start me on a new medication called Hydroxychloroquine. No changes yet with that, but I’ll keep you posted.
In the meantime, I’m supposed to get it in with apparently the one and only doctor in our area I’m told can determine what causes small fiber neuropathy (the results of the biopsies I had late spring/early summer).
I’ve been persistent in my attempts and keep getting told that at the beginning of the next month, I can call and check his calendar but when I do, I’ll find that he’s booked solid for at least the next nine months. It’s all so exhausting. It has also been radio-silence on the post-COVID research study I was supposed to enroll in.
I still feel that treatment is out there… that healing is possible if I can just find the right, responsive and holistic medical care team. Wish me luck on that. Two new things I’m trying… I scheduled an appointment at the National Jewish Health Center for Post-COVID Care & Recovery. That’s in mid-September. And I reached out to a doctor that I learned about through FND Hope, who specializes in Functional Neurological Disorder. We have a telehealth August 25th to see if she might be able to help me. Keep your fingers crossed one of these is fruitful because I’ve spent every last dime of my medical fund and so, I need to be laser-focused on the right care or surrender to figuring out how to just live with it.
On the non-medical front, I’m using the Headspace app and prayer daily since June 28th. I’ve been scheduling intentional rest days (or work from bed days is probably more accurate), so that I don’t need to cancel anything and reel from the guilt of falling through on someone. One of the great mentors at the Bridge recommended the Pathways app to help cope with and reframe pain. I started that and have been consistent since August 8th.
So, while the closest I’ll likely be to the pitcher’s mound is this selfie I took at a park during my Bridge stay in Utah, I continue physically, emotionally and spiritually prepping to make that dream a reality.
I’d love to hear what pain-relief options work for you or books that you’re reading that provide insights and inspiration.
One of my hopes with this blog is that it can be a place to share experiences and options. So, I’d truly love it if you’d join the conversation. Be well, until next time.
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