I caught covid for the first time last summer, and I continued to test positive for almost a month. What a mess. As I slowly recovered, I simultaneously felt better symptom-wise than I had in quite a long time while also developing new symptoms that are now creating struggle.
That sounds kind of crazy, and I probably should unpack things a little. Let’s start with the better, okay?
Last October I had a terrible flare of symptoms that caused extreme joint pain, fatigue, brain fog, digestive issues, and… I WAS UNABLE TO KNIT FOR MONTHS!!!! I struggled to read. It was hard to do even basic things. My GI tract was in full revolt. I began to wear knee braces every day, pulled out the walker, and pruned my diet down to a few reliable items that were safe to consume (lactose free yogurt, I’m talking to you!!) I began to lose weight at a steady clip of a pound a week.
The hand under the hot pack was last year, and you can see the damage that was left behind on my current hand on the right. Last year my rheumatologist tested me for lots of things and I don’t have gout, or pseudogout, or rheumatoid arthritis, or any other thing except common osteoarthritis: no signs of inflammatory arthritis. I thought that was crazy talk at the time, but it’s hard to argue with negative test results even though I feel like I am dealing with obvious inflammation (swollen joints too sore to touch, right?). Anyway, after a year of struggling to knit or even type, my symptoms went away as I recovered from covid and I have been knitting up a storm (well, sweaters, actually, but you understand what I mean). It has been great. I can knit all day if I want. I can literally stay in bed all day, knitting happily along, ordering in groceries and enjoying my books… in bed. I am full of creative energy and am making tons of plans that involve my sewing machine and the looms. I’m wanting to buy another loom (that I can use in bed). Really, things are going great. Fabulous. I’ve even restarted my physical therapy routine, and my mobility has improved.
Oh… why am I in bed? Well… in the wake of covid I have developed worst dysautonomia. I struggle to control my body temperature. My blood pressure crashes when I eat. My heart rate goes bonkers without warning. I’m too cold all day long, and then I can’t sleep because I’m too hot. “I’m so sorry,” said one of my doctors. “This is very difficult to treat or control.” Fabulous. I do want to point out that many of my symptoms are greatly improved, my latest lung testing showed even more improvement, and I feel stronger than I have in years. The hope is that I will get better in time, and in the meantime, the cats are happy to hang out with me as I fuss around the house.
I was just sitting and reading when I got very dizzy suddenly and sure enough, my stupid heart decided to go into overdrive. Another adventure in dizziness caused me to check my blood pressure; for me, that is very low pressure. After another 2 hours I was back up to 128/72 and feeling more like myself. My doctor has advised me to just eat little snacks all day and to drink lots of water if I eat an actual meal.
Scleroderma, this is not funny at all! Oh, well. At least I can now knit and read…
I do want to back up to my bad-boy hands that gave me such a terrible time for most of the year. When I saw my rheumatologist in November she checked my x-rays from last year and then took a long look at my wrists and knees. My wrists are significantly worse than they were a year ago (but causing minimal problems at the moment… go figure) and she decided to order up some specialized testing to take a better look at the joints. Today I drove to downtown Denver to get specialized ultrasound imaging of those wrists. The technician was just wonderful, and she explained what we were seeing on the screen as she stopped to take pictures. There was a lot of obvious damage, fluid in the joints, and calcium deposits in tendons. “You’ve really been going through a lot,” she said. Finally, some validation. It was hard to not feel hopeful as I walked out of the clinic. On the way back home, I stopped at my favorite yarn store for a little yarn therapy action, and that was when the day turned into a “Thoughts on the Night of the Last New Moon” post.
In a nutshell, this is my situation. I feel better, and I am happy, but I am dealing with significant difficulties because my autonomic nervous system is refusing to behave itself. There is no easy fix. My joints are a major ongoing problem with no end in sight, because I can’t do many of the traditional remedies because of my scleroderma. I want answers! I want cookies! I want yarn!!
I walked into the yarn store.
The first thing that I see is a stack of my favorite cookies!!! Yay! I put four boxes into my shopping bag.
Then I saw great yarn that I needed to have. Yep. Into the shopping bag they went with reckless abandon. I want these yarns; my stash has been feeling a little peckish. Obviously, it also needed to be fed. Then my phone toned the sound that told me an incoming text had just arrived, so I sat down on a loveseat right in the middle of the DK weight yarn section and read the message: the radiologist had already read the imaging from my wrist ultrasounds and the results were available.
Active synovitis of the joints in my wrist. Inflammatory arthritis. Ironic, since I’m feeling pretty good at the moment with minimal pain. I wonder what that wrist would have looked like a year ago. It is such a huge relief to finally have a lab result that validates what I have been telling my doctors (and experiencing) for years. There is value in sticking to your guns and asking for more testing. Evidently this type of imaging is new, and it identified the problem that the standard imaging techniques failed to see. I don’t know what can be done to help me, but the relief is immense.
As I drove home, buoyed by the cookie haul, the shiny new skeins of yarn, and a sense of success and validation, I took a different route, passing by a large lake just south of my home. In the sky above me a flock of white pelicans wheeled in the sky, huge white birds with black bands on their wings. My heart soared with them.
More little glimmers:
- Through the entire outing my stupid autonomic system behaved itself and I didn’t get dizzy even once!! 🙂
- I delivered chemo hats to the infusion center at the facility where I had the ultrasound done. I have a little collapsible wagon that I use to roll the bags of hats to the department were they need to go. People laughed and joked with me as I rolled through the hallways (one lady insisted on pulling the wagon for me on my way in), adding to the overall good feelings of the day.
- Remember me mentioning last spring that I was following some bald eagles in Big Bear, California online? Every day I checked the eagle cam to see if the chicks, Sunny and Gizmo, had taken their first flight yet. This week the parent eagles, hard at work preparing the nest for the upcoming chick season, were visited by 2 juvenile bald eagles who in high probability (because of the behavior all the eagles are exhibiting) are their girls from last season: Sunny and Gizmo. It is just wonderful to see them back even though the parents aren’t going to let them come near the nest much longer.
- It really is the last new moon of the year tonight.
- The interstellar comet 3I/ATLAS is zooming past earth tonight. It has been fascinating to follow over the last few months as its behavior has led to loads of speculation and lots of data collection. Safe travels, little guy.
- This isn’t a glimmer, not really. We are in the middle of a high wind event that has forced communities to shut down west of me and the power has been cut to those residents. I feel grateful that there hasn’t been a fire since the risk is enormous at the moment, but I feel bad for everyone impacted by this. Thankfully, we are also experiencing record breaking heat.
- I fell and injured my right knee last summer. It still hasn’t healed, and it is getting a MRI next month. Fabulous.
- I am planning another post about the yarn and knitting.
- Don’t you think that I should treat myself to another simple loom that will be easy on my wrists?
Yarn, Books & Roses 