September 17, 2024
Living with a progressive autoimmune condition is BORING. Boring because if you’re not working, all you do is sit at home and if you are working, you have to be careful how much time you take off for appointments and treatment plans.
First, I was a CNA/ medication aide working in the skilled nursing and memory unit section. When I could no longer lift 200+ lbs, I moved to the memory unit/ assisted living section, which was less heavy lifting as the residents were pretty much independent. -At that point, it wasn’t that bad and I was still searching for a definitive diagnosis. In 2014/2015, I was diagnosed with just degenerative discs and sacroiliac joint problems. So, no big deal— it was just back pain right? At one point, it was Fibromyalgia, then that flopped. I didn’t really have any symptoms of that, yet one doc still diagnosed me with it. Very briefly, afterwards, I was diagnosed with MS. That flopped too. It didn’t make sense either. Then, they said that I’m drug-seeking or crazy. So I quit looking for a diagnosis because I felt like I could keep going, until 2020. I had a major surgery, went back to work. 2020 came around and I knew I was feeling worse. I *still* felt like I could keep going.
In 2022, I moved to doing a desk job. That felt pretty good. I was happy and didn’t feel bad at all. I loved the group of maintenance men that I worked with. When something didn’t work out, those guys informed me and they were vocal about concerns or anything like that. I had their respect (I hope) and they had mine. -In May of 2022, I was officially diagnosed with Bechterew’s Disease (aka Spondylitis), a progressive fusion of joints beginning in the spine and moving to fuse what’s called peripheral joints like hips, hands, knees and shoulders. This year, my hands began bothering me, aching. My previous rheumatologist who has since retired had me on infusions for about a year and a half, from May 2022 until October/ November 2023. In December 2023, the new rheumatologist thought it was too much and we moved to injections that I give myself. -Ever since March, things have been going wacky. I woke up one day in March with fever-like aches and chills without the actual fever. The first noticeable change came from a blood test in March where my liver enzyme levels were through the roof (some liver damage). Normal liver numbers are supposed to be somewhere between 25 and 44 and mine were 109. 300 to 600 is when you apparently become jaundice, but they didn’t get that high, thank goodness. The second sign that something was wrong was decreased movement in ligaments and joints. Sitting down or bending anything was next impossible and very little sleep. I went through this pain until about early June and spent those weeks on 80 different medications and steroids trying to get that inflammation down. Fever-like chills and body aches eventually went away. I would wear thick socks, two pairs of leggings and a hoodie during that time. In May, when I spoke to my rheumatologist, she said, "Honey, had you felt like this in years prior?"
"No, I’ve never even had a cold this bad."
She said, "Honey, you’re going through your first major relapse/flare."
For two whole months, from March to May, I had no idea what was going on. I quit my job on May 13th after Cody and I had discussed it. In June, I started to feel okay again after all the medications and injections. My liver was reacting to my flare 🔥 and trying to give me a sign. That was the first clue. All that time, I blamed the injections for the elevated liver enzymes, because one side effect is liver issues. Turns out, I had a GI problem causing this flare and symptoms and couldn’t eat anything solid but noodles with only broth and crackers. We avoided tubes and surgery, thank goodness. When something major happens in your body, your liver can decide to react and freak out. This might not happen to everybody— this was just my unique case. In late July or early August, after all the inflammation died down, my legs became really weak and somewhat tingly/numb. After joint inflammation comes muscle weakness apparently, like an after-effect. I fell about two or three times. I couldn’t hide my gait anymore and I’d rather have my cane than worry about what others think. I found it difficult to walk longer distances than before, so I swallowed my pride, started to use my cane more often and ordered a custom-fitted wheelchair for those longer distances. This is fitted to my dimensions. I went to a place in Missouri and it took a whole hour to measure. Out of desperation, I bought a semi-custom wheelchair back in late May. It gave me some freedom. And recently, I finally got out of this house for an outing that was longer than an hour. I had not gotten out of the house much since March, except for appointments. On Sunday, September 15th, I went to a museum and got lunch with my wonderful husband, using that wheelchair. We were there for about two or three hours. Walking for that long would’ve been impossible ever since all this started this year. It used to be that every once in a while, as I was driving, that my foot would be so weak that it would slip off the accelerator. That only happened a very few times. Lately, after the inflammation dissipated, the muscle weakness and numbness has been more persistent, so I’m getting portable hand controls that will attach to the pedals of my truck soon and I can attach them to any vehicle that I drive. But as of lately, I’m feeling great. After months of noodles and broth soup and crackers, I’m eating normally. I don’t know how long the muscle weakness/ numbness will last, but I’m not dwelling on it. The main focus is going to PT, dealing with treatment and going to appointments. It’s the little things that are worth more than the big things. When you look back, you’ll realise that those little things were actually the big things.
DON’T IGNORE YOUR HEALTH. When something feels off, keep persisting.
#AnkylosingSpondylitis @chronicallyoffline #Wheelchair
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