Welcome back my friends, to the show that never ends
–Emerson, Lake & Palmer, “Karn Evil 9: 1st Impression – Part 2”
We’re so glad you could attend, come inside, come inside.
If I’m going to get back into the swing of things, I should just dive in I suppose. So, what’s going on? Well, I last was updating things in 2021, and things back then were pretty okay. The pandemic was winding down and things were “returning to normal”, yet my job was still remote at the time for various reasons. I had started to feel some stiffness in my hands now and then, but hadn’t thought much about it. Around the last post I made I was starting to have some trouble with a bad tooth, but hadn’t made plans for doing anything about it yet because it was only mildly troublesome. If you’ve ever seen Deadpool, there’s a line in the movie that fit quite nicely for me at that time.
Here’s the thing. Life is an endless series of trainwrecks with only brief commercial-like breaks of happiness. This had been the ultimate commercial break. Which meant it was time to return to our regularly scheduled programming.
Only a short time after the last post I made in 2021, I had finally had enough problems with that tooth to have it looked at. A failed trip to the dentist later, I then had a schedule to meet with an oral surgeon. I think I came in for a consult, got everything lined up, and then scheduled for the extraction – on the last day when summer camp would be happening. Well, guess I’m not going this year. The night before I cracked another tooth too, which my previous dentist had said, right after my wisdom teeth and one other molar came out, “oh that one should have come out too.” Excellent timing there Sparky. This surgeon got it all taken care of, including a biopsy of the surrounding tissue which wasn’t normal (later verdict: not cancerous, but not normal, and the solution was exactly what he’d already done – removed all the tissue). So a few months off of doing the D&D campaign since I didn’t want to talk that much, and we never got back to it. That’s a someday project, restarting Foundry and starting the campaign over, which everyone’s on board for I just need to do it. Anyway, that takes us into the fall of 2021. Things should be good right?
Well, they got worse. I started finding it difficult to close my hands, and walking down the stairs in the morning was painful. Hell, everything was painful. The joints in my fingers and toes were screaming out almost all the time, mobility was severely impacted, one toe started to look more like a sausage than a toe as well as my hands started swelling, and everything hurt. Well, those who knew me for a long time knew I had psoriasis, and it was finally time for me to progress to the next stage – psoriatic arthritis. Talked with my physician, figured the first place to start was a dermatologist, got an appointment, and got on Tremfya in November which did wonders for clearing up my skin and did quite a bit for clearing up the arthritis as well. Still stiff, still sore, still had flares (days where things were more stiff and swollen and didn’t work well) but better. After about a year my skin was great, but I still had these flares now and then that made things hurt and made it difficult to do much of anything, so I sought out a rheumatologist as well. She started me on Sulfasalazine which seemed to make things a little better as of around October of ’22. But over time, I kept having to increase the dosage, and I still had flares and problems, plus the side effects were … not fun. Sulfasalazine is also used to treat things like IBS and ulcerative colitis, so it tends to affect your intestines as well. For someone who does have some GI issues on occasion, this was.. unpleasant. But the worst was right around November/December of ’23 when I literally had days I could not get out of bed or move. Stephanie moved her leg in bed one evening and her knee bumped into my hand, causing two or three fingers to bend around no more than if I curled them around the handle of a tennis racket – that much movement caused me to scream and cry in pain for a half hour. Having read some things that said that in some patients Sulfasalazine can actually make arthritis problems worse, I went off it immediately. I started to see a decrease in my pain levels and increase in mobility, and went to my next rheumatologist appointment with more data, and a desire to find a new treatment. We decided on Enbrel, but I had just taken Tremfya about a week before. Tremfya is taken every two months, so we thought it best that I wait that long before starting Enbrel. Well that would have put me starting it just before a trip we planned to take, so I thought I’d begin after we got back.
In April of 2024 I started taking Enbrel. Unfortunately enough time had passed since my last Tremfya dose that my body was starting to attack itself again, and I had a couple psoriasis plaques forming. They weren’t too bad and I hoped the Enbrel would take care of them as well as giving me some relief from the arthritis. By this point, while I wasn’t in the severe pain I was in back in November and December, I walked with a cane and as little as possible. During our trip in February, I rented a mobility scooter to get around the zoo we visited. While I didn’t have as much pain, I still had limited mobility, and I definitely had (and still have now) very little energy to move around a lot. I started my first weekly Enbrel injection on a Wednesday evening, with the idea that Wednesdays are usually pretty easy for me to be able to be home and do something like that (weekends could be hectic with camping trips and such, for example). By that Friday I stopped using the cane around the house. By the end of that weekend I didn’t need it outside the house, though I brought it just in case. I was able to go to summer camp in June and while I did use it a few times, it mostly stayed with my stuff in camp and only made a big appearance the day after I completely overdid it by moving around camp way too much with the wrong footwear. And that’s about where I am today – though unfortunately again, I see that the psoriasis is not getting better, and in fact some of the spots are getting worse, so my next appointment will be to discuss what the next plan is. And sadly that may mean I’m back to being useless for anything but my brain for some number of months while my body deals with all the changes of swapping another medication around like that.
One fortunate thing in all of this is that I’ve been able to continue working from home through the hard work and dedication of my manager and others I work with. This is important because every day when I wake up, even on my good days, I’m not able to move around much for a few hours. Mornings are a lot of sitting and drinking coffee with two hands on the cup because one isn’t sufficient to hold it. On good days, by around 11 or so I’m able to stand long enough to go take a shower or get dressed. On bad days that doesn’t happen until after 5 or 6 if at all. Kinda hard to get up, showered, dressed, and out the door for a 9am workday – but quite possible if I can just sit at the desk where I’m already having my coffee and do it from there. Since even if I’m “in the office” my job is remote – all of the computers I work on are miles away from where my office was – I figured it would be simple to transition. It was not, and took a lot of work and filing of paperwork and hearings, which needs to be renewed every so often (which is funny to me, because the only time I will not suffer from this is when I’m dead) but things have stayed as I hoped for now and I continue to work from home.
So I guess that’s that. That’s what’s been going on with me at least, for the last couple years. There’s been some other things about stuff I’ve done, stuff I’ve learned, and stuff I plan to do, but those will come up in other writings. This was more than enough for now, especially considering nobody is going to read it 😀