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 
I sorry for all you have been going through and glad that you have finally been validated! I have a friend who is dealing with a ton of long covid medical issues and has been for the last six months, going from doctor to doctor and test after test, treating symptoms for things that have never been an issue before. I’ve had covid twice and had an odd after effect both times that made me think I was crazy until I met a doctor at my hospital who named and had gone through what I was experiencing, an ‘altered sense of smell.’ not a loss of sense of smell, but an altered sense of smell which is a whole other crazy thing to live with, but fortunately not painful, even though some people stop eating because of it.
I feel for you and am glad that you are learning to work around it all and live the parts of your life that bring you joy in spite of it. I’m hopeful that you can get treatment that will help.
Long covid is such a problem, and people that I have talked to describe problems that mirror a lot of the symptoms that I deal with. I understand completely how frustrating it is to deal with ongoing symptoms that are hard to activate medical help for because they are invisible and hard to quantify with testing. I am lucky in that I have great doctors (even though I struggle with a diagnosis) and good support.
Good grief, woman. I’ll never again complain about a sore back, dizzy spell, etc. Besides, I think you already have a corner on virtually every ailment out there.
Covid does such weird things. My granddaughter had it and for months could not taste anything red. (I’ve managed so far to not get it, probably because I live alone and almost never go out.)
No wind problems here. Max gusts in the 50s. But my brother lives up on a mountain between Boulder and Nederland and his power has been off since Wednesday. Not to mention the 90+ MPH wind coming straight up the valley at him. His beautiful vista to the west has its downside.
Psst, don’t tell Mateo I said so but he is SO handsome!
Take care, and don’t eat all those cookies at once.
Several people have told me about strange things happening with sense of smell/taste after covid, but it only happening with red things? That takes the cake! How very frustrating!!
Mateo is so spoiled, I won’t let him know that you find him handsome to boot. The new silver hair is kind of amazing and really soft to the touch.
I just heard that there is a fire above Boulder and that evacuations are underway. How awful, especially since the feds just refused a request for assistance because of pervious fires and floods. Hateful, vindictive policy. I also suspect that the money is gone and that is why requests are being denied…
Just read that fire is almost out, evacuation prep orders cancelled. Good thing. My brother lives in just over the ridge to the south and west of there, on Sugarloaf Rd. The fun never ends up there.
And, oh yeah, my daughter-in-law came home from work early today after testing positive for Covid. Pretty well blows away all Christmas plans this week. 😦
All that denied federal assistance … and the announced dismantling of NCAR. I’ve no doubt it’s retribution for not allowing his pardon of Tina Peters.
Oh, no. I hope that you didn’t have Covid for Christmas!
I absolutely think that NCAR is linked to the Tina Peters pardon, but Colorado absolutely should not honor that pardon for many, many reasons. It would validate election interference, further the belief that the 2020 election was stolen with people who want to believe that, undermine future elections, and make states’ rights somewhat fluid (you know… states have rights only if they support the goals of the current administration, and the administration picks which state laws to uphold. What a nightmare that would be!)
I just read a Baba Vanga prediction for December, 2025, that said a new loom is looming on the horizon of a woman living in Colorado. Could that be you? Hurry and make that prediction a reality when the after-Christmas sales start. If you could buy it online at Wal Mart, they’d deliver it tout de suite, and all you’d have to do is drag the box in the house. Mateo could stand guard for porch pirates.
I did order the loom and it is on the way to me! Today I registered for an online weaving class in January, and there is weaving on the horizon! Mateo is currently on guard duty…
Yes! That’s good news, indeed! Glad Mateo is on guard duty and not shirking his duty by gazing at the bunnies making snow angels.
Would you believe that there is no snow. It was almost 70 degrees today!! Mateo is, however, taking his duties seriously and keeping a close on the front porch… there is a bunny nearby.
Another of your amazing posts that details so much of what your body is doing – to you and for you, it must be said, Marilyn ! Quite extraordinary, it all is; and as you’ve had cause to comment on, often shrug-engendering (and I don’t mean the craft kind). I’m not amazed that your knee hasn’t healed, and I doubt that you are, either: your body makes its own mind up as to how it’s going to deal with stuff.
I’d watch your eagles with you – such magnificent birds ! You lot up there have so much wonderful wildlife – a lot of it prey animals. Our wildlife is mostly small, and none of it savage (even the ones that frighten people, like snakes and spiders, would far rather not be where people are).
Those are marvellous shots of Hannah and the Coal Bear !! – really impressive stuff. You’re awful good with your camera, mate !!
I am really glad that you can be grateful for and happy about record-breaking heat, coz that’s going to continue. Which will mean that you can just sit back and enjoy it, munching on those cookies and knitting away on some terrific item that will knock our socks off.
Yes, you do need to get that loom. Marilyn, do not look on purchases like that as spoiling yourself: they’re only enabling a continuance of activity.
And long may it be !!! Love ya !
It is always a challenge to answer your comments on WordPress as I need to actually type answers in the text of what you wrote with a changed fond and maybe a nice new color like I do in long emails. 🙂 Let’s see if I can respond to everything you said.
1. The dang knee is just being a bad boy! It didn’t heal and it looks like it is bleeding into the joint after all this time. I am not happy with it, but I am wearing a knee brace and managing okay.
2. The eagles are just wonderful to watch! Before we know it there will be new eggs and chicks. It is sad that the girls from last season are now being chased away from the nest, but they are big enough to catch their own fish now! I am pleased to see that the two girls (Gizmo and Sunny) seem to be hanging out with each other still… sisters forever!!
3. The cameras on cell phones are just amazing! I do have to mention that I had a course on how to do design work that helps me now as I take photographs.
4. The heat is stunning. It is practically balmy outside as we head into Christmas. Obviously, no white Christmas for us. There is a lot of wildlife near me as I am on the edge of the Great Plains; sometimes too much.
I just bought that new loom!!
EXCELLENT, me auld darlint !! – and so you should. I can see no purpose in your holding back and not getting something that not only do you *really* want, but that will help your somewhat fraught journey. I do not wish to hear you wondering “should I get …?” again, you hear me ?! 🙂
The knee ? Do any of the specialists think it a worry ?
Sometimes too much wildlife … I think this may refer to either its siren call to Mateo or its causing you anxiety re the netting on the catio. I kinda doubt it’s because you are afraid of it: much more likely it would be afeared of you. [grin]
If you had the time or the inclination to be involved in Bluesky – a successor to what was once Twitter, but so much nicer and more interesting and less nasty, and almost a home for the elderly ! – you would come across me haranguing photographers daily: “This would’ve been a wonderful shot if only you hadn’t framed the bird smack-bang in the middle !” and similar. I am ruthless. [grin] I’ve even confessed that I’m the world’s worst photographer: it’s the years I was married to a professional that have given me some of the dialogue. The don’t mind !
You keep on with yours: as you’re not wandering about the countryside taking panoramas, it’s VERY unlikely that I shall find a need to make one of my snarky comments. 🙂
My love to the furry ones and to you …
Thank you for sending some love my way. When I take pictures, I’m mostly trying to catch a moment when the light is just right, and of course, the cat is not in motion. What I’ve learned is to pay attention to what is around the subject of my picture and to line things up so that they are straight.
One day there was a huge hawk in my tree, and of course Great Horned owls are a problem because they can carry off a cat. Mostly I am cool with the wildlife (as in… wait. I need to take a picture of this snake in the yard…), but some can be a problem for the cats or may actually damage the house Wwoodpeckers!!!! I’m talking to you!!!!)
I can’t even imagine coping with all the fun your body seems to bring you. Really, sitting and reading and the heart goes nuts. I’m so sorry. Yet thankfully you carry on. Those cookies do look amazing!!
It really is challenging sometimes! The art in all of this is to find hacks that allow me to keep doing the things that I want to do. In my experience people who focus on the things that they can’t do anymore instead of new ways to function struggle the most.
The cookies are amazing!!
I believe I have already commented on your resilience, Marylin. This is it. May you remain upbeat as long as you need to,
Resilience is the word of the year!
Another year has gone by where I am blown away with your resilience and fortitude to keep on carrying on when your body and life events try to knock you down. You are a gladiator and an inspiration.
Thank you! I’m going to try to channel “gladiator” this upcoming year!
I’m so glad you have some progress and are feeling somewhat better, even though you still have so many significant issues. Glad for the validation of what you have been going through, and also for the glimmers you are finding!