TW: lots and lots and lots of talk about health, and bad health, in particular, below.
So I know I never really updated everyone on What Was (is) Going On With My Health. It’s been a huge mess, and I run out of spoons every day just trying to eat meals at the right times to take my meds.
Shortest version possible (believe it or not): at the end of May last year, 2019, pretty much all my joints and extremities swelled up unbelievably. Like I couldn’t put my feet on the floor because they were so swollen it felt like the skin would split open. I had to sit in a chair all day with my feet elevated on a stool and pillows just to keep them from continuing to swell, and I had to sleep with pillows under my feet to keep them from swelling more during the night. I say “sleep” loosely, because I was getting about an hour to two hours of very interrupted sleep every night. The swelling was so bad that just to leave my chair where my feet were elevated, and go sit at the table to eat meals, my feet would swell so bad it was hard for me to walk from the table back to my chair.
Then my hands started going numb and tingly, but not in a “my hands are asleep” kind of way, but more an “this is excruciatingly painful but I still can’t feel my hands” kind of way. I couldn’t close my hands into a fist, and I couldn’t open my hands either, they were frozen in a sort of half curled position.
There were several weeks where I couldn’t hold a fork or spoon to feed myself. There were months upon months were I couldn’t brush or wash my hair by myself. I spent months with my hands/wrists/feet/ankles packed in ice every 20 minutes to try to control the swelling.
I also had this awful brain fog situation where I couldn’t focus on anything. Even if I had been able to hold a book, tablet, or phone (which I couldn’t, because my hands were so bad), I couldn’t read because I had absolutely zero concentration or focus or comprehension. Even watching TV was almost impossible because I would zone out and come back to awareness and so much time had passed I’d have no idea what was going on. I literally spent three or four months just sitting in that chair in pain, staring at the ceiling, crying on and off.
So, so much more below the cut.
I could barely attend my niece and nephews baptism. We were there for as long as it took for the actual service to happen, and while I tried to stay for the meal and gifts and such, I was in such excruciating pain--and using a cane to even be able to walk--that we had to leave early.
My niece’s 4th birthday was a few weeks later, in late June, and again I was there with a cane and in excruciating pain. I’m my niece’s favourite person and having to tell her Auntie couldn’t get down and play with her, or hold her, was terrible.
By the end of June, my PCP had run enough tests to be outside his area of knowledge and referred me out to a rheumatologist. The earliest the one I wanted to see could see me was January. This was the first week of July. So I looked around for whoever could see me first and chose them.
The soonest someone could see me was, unfortunately, on my birthday last year, July 15th. So I spent my birthday seeing the rheumatologist, being diagnosed with carpal tunnel, tendinitis, and what he suspected was rheumatoid arthritis. Once I left his office, I spent my birthday getting bloodwork (8 vials, yikes, which continued monthly for the remainder of 2019), and then getting fitted for a set of wrist braces that I would have to sleep in for maybe the rest of my life, and wear during the day when the pain was so bad.
The rheumatologist literally said to me “well, none of your labwork confirms this and we don’t really know, but we’re gonna treat you as if you had rheumatoid arthritis”. Although he kept running tests to try to confirm the RA, he didn’t look anywhere else to try and figure out what I actually have.
So they started me on medication(s), and referred me to occupational therapy and physical therapy. I was so bad when I started going that my PT consisted of sitting in a chair and (trying) to flex my ankles in different directions, and then a lymph massage to try to reduce swelling. My occupational therapy, when I started, consisted of trying to pick up pieces of sponges and put them in a cup. I was so bad that was actually almost impossible for me.
They also referred me out to have a nerve conduction test, where they stuck needles all through my arms and electrified them. It was the worst thing ever, let me tell you. Then I got referred to a hand surgeon (who is lovely, actually) for surgery. He decided to hold off on surgery and see if steroid shots would help (they did, to an extent, and I am so grateful for that).
Fast forwards through months and months of testing and bloodwork and physical and occupational therapies and medications, and the swelling had reduced enough that I could stand up or walk to the bathroom or eat dinner without swelling up so bad anymore. Being at PT and OT still meant I came home and had to pack my feet and wrists in ice and elevate to take care of the extra swelling, but it was better. Not good, not right, but better.
Fast forward more, still, and it’s December. At that point I could stand long enough to help cook dinner, or even run an errand or two before I was in too much pain and had to sit and elevate again.
In mid-March they released me from PT and OT. Not because I was better--I still couldn’t (and can’t, now) bend my wrists at all--but because the prescription had run out. I’d basically used all the allotted amount I had. This ended up being alright in the long run, since aside from one trip to the lab for bloodwork, I haven’t left my house since my last day of OT on March 13th, due to Covid. Turns out having an auto-immune disease and being on immunosuppresants makes you REAL high risk for Covid, and I’m just not playing that game.
At the beginning of April, I finally got to see the rheumatologist I WANTED to see all along (via video visit! Didn’t even have to leave my house and be exposed!). She’s awesome and is really set on finding an ACTUAL diagnosis for me and not just saying “we don’t know”. Had 9 vials taken from me in her first round of bloodwork, and then she said it looked like it could be Lupus and did more tests.
She’s now pretty certain I DON’T have Lupus OR rheumatoid arthritis. I had an appointment with her at the very end of July (video, again), and it turns out she thinks I have something called sarcoidosis. This is going to require a CT scan, for my lungs and heart, to see if the disease is in them. Evidently with this particular auto-immune disease, your body overreacts and encapsulates what it thinks are dangerous foreign bodies (but really are just part of your own immune system) and creates “granulomas” around them. Basically think of an oyster creating a pearl around an invading body, except in this case instead of pearls, I have lumps of stuff that hurts me.
Horrifying to know I have to walk into a hospital at this point in time, of my own free will. Like I said before, aside from one set of bloodwork, I haven’t been exposed or been out where I could be exposed at ALL. All that goes out the window once I walk into a hospital for a CT scan. :\
After the CT scan, depending on the results, there’s other tests I’ll need. Chest x-rays, EKGs, pulmonary function tests, lung biopsies (YIKES) and others. She seems fairly confident that this is the correct diagnosis for me, but wants confirmation and also to see progression of disease.
At any rate, she’ll be changing my medication. Which sucks for so many reasons, not the least of which is I just picked up 360 tablets of it that I now won’t be taking. :| Also the fact that now I get to try a new medication and do the “am I having side effects or am I just anxious” song and dance.
She’s also talking about needing to put me on steroids which I am REALLY unhappy about. I suppose it’s better to go on steroids than to die, but I’m still really unhappy about it.
In other, related news, I’ve developed hypercalcemia. Which means there’s too much calcium in my blood, which can cause a HOST of other problems. So I’ve been put on a no-dairy, low calcium diet. Do you know how many items have calcium in them? Almost everything, that’s what.
Also, they fortify all the non-dairy “milk” products with calcium. They all have as much or MORE calcium than dairy milk. It’s been a NIGHTMARE, to the point where I’m actually afraid of food now. I’m obsessively reading labels and doing research online. “How much calcium is in 81 grams of kiwi, after all?”. Nightmare. Dairy was my #1 love and foodgroup, and having to suddenly figure out all new things to eat and ways to cook while simultaneously being in pain and *exhausted* 24/7 because auto-immune is not. fun. at. all. It’s already all my energy every day to help make, eat, and clean up a meal. I literally have to sit in my chair after a meal with my feet elevated to recover. Now having to spend all this energy on a whole new diet plan is a nightmare.
Basically this whole thing has been a MESS. It’s been 15 months, I’ve been being treated for the wrong disease for 14 months, the news I’m getting now is worse than the news that flattened my emotional response all those months ago, I still can’t function, and I can’t work.
Oh, yeah. I haven’t played an instrument since May 2019. My whole life revolved around my music, and now I can’t even play to make myself feel better, because my hands don’t work. I’ve also been out of work since then, too: my last concert was April 2019. I haven’t made any money since. But I have had co-pays out the wazoo!
Which reminds me that they raised the price on two of my meds, because of course they did. Thanks, congress.
This has been really, really hard.
My anxiety has skyrocketed through this, and my depression isn’t doing much better. Although physically I’m not as bad as I was, I’m nowhere near normal, and I don’t think I’ll ever be able to go back to my normal again, either. The best I’m hoping for at this point is to be able to eat calcium again someday, to not have my organs eaten up by this disease, and to continue existing.
It’s been exhausting. It really, really has.
That’s not to mention the added stress and anxiety over Covid, and the fact that neither mom nor I can even go to a grocery store because of my high-risk status. We’re averaging getting groceries about once a month right now. It’s super fun now because I have to read the label on EVERYTHING but Aldi doesn’t post their nutrition labels online and!!! That means I have to either guess or not get things! Great!
All this to say that I miss being on tumblr. I miss all my friends here. I miss talking to you all and being able to laugh with you and geek out. Things have been really hard for me (and there are multitudes I haven’t included in here; even if my hands would allow that much typing, I’d probably hit a character limit.
Just: I miss you all. I love you. I’ve been a wreck, but I think of you all often. <3
