TELL ME ‘BOUT THE GOOD OLD DAYS

March 26, 2025

The good old days, of which I speak, are those not so good old days when I had regular arthritis flare ups, serious chronic pain and worried about losing more range of motions. And guess what? Those good old days have come back to visit!

Yes, I think I mentioned that I woke up the day after the first immunotherapy treatment with a JRA flare up. Well, every day has been the same. Some days are quite bad, with every joint affected and lots of pain in any movement. Some days are mild, noticeable, but easy to manage by just ignoring it. I never know what the situation will be when I wake up each day. I’m trying to manage it with little medical help. Ibuprofen helps some, but ibuprofen can cause bleeding, and the immunotherapy can cause bleeding as well. They only want me to use it sparingly, and only if I absolutely must. I didn’t realize how little trouble I had with the JRA anymore, other than the inconvenience of the loss of dexterity and range of motion after a lifetime of the damned disease. Now, I’m noticing the difference, because this is like it was in my childhood or young adult years. Frustrating.

And now, let’s talk roller coasters. Not the kind that races up and down hills on tracks at amusement parks, but the roller coaster of life these days. This past Thursday was a week since the first treatment. I woke up Friday with some fairly strong stomach pain. Not like what I experienced last November. That was the worst stomach pain I’ve ever had. But this was similar to some degree, running across my upper abdomen. At the same time, it also felt like heartburn, that acidy feeling. Nurse Laura told me to call if there was absolutely anything new. Was this new? Was it just a different rendition of the occasional stomach trouble I get? I didn’t know. Eventually, I did call the triage line, where they took the info and reported it to Dr. Z. He advised monitoring and if the pain got worse, go to the ER. Well, damn, I wasn’t going to do that, unless it became as bad as last November. Seriously? Go to the ER, wait hours upon hours, and be told to go home and take anti acid meds? Yeah, I decided to wait it out. By Saturday, it was definitely completely like heartburn, like I ate something that didn’t agree with me, and by Sunday morning, it was gone. End of the first roller coaster ride. Grab those safety bars!

In the middle of the night, Sunday to Monday, I woke up with a terrible pain in my left side. NOT MY HEART! It was located below my rib cage and above my hip. It felt muscular. It was bad, very bad. I could breathe but not take a deep breath. I could move cautiously, but every movement hurt. I couldn’t turn on my left side. I was freaked, definitely freaked. I’d never experienced anything like it. This wasn’t in a joint, wasn’t in my abdomen. I wasn’t sure I would be able to get out of bed.

At around 5:30 in the morning, I unconsciously took a deep breath and cried out loud from the pain. At that point, I yelled for Doug, who heard me, thank God, even though his room is at the other end of my house. I knew I could not get up on my own, and I was scared.

Doug came running—what a fantastic friend. I explained and asked him to grab the remote for my bed and raise me to a sitting position. I have one of those fun Sely beds with a remote to raise the head of feet. He raised me up, and moving that way, not using my strength, didn’t hurt at all. Doug helped me move my legs off the side of the bed, and then I put my arms around his neck, and he lifted me out of bed. There was no pain. Wonder of wonders; miracle of miracles.

I had a dilemma, because I had to pee, but I wasn’t sure I’d be able to get off the toilet on my own. When you’ve been best friends with someone for 26 years, there’s almost nothing you won’t do for each other. I did my business, and Doug came in and lifted me to my feet. Best friend ever! I did call Dr. Z’s office over this, because I just didn’t know if it was some weird muscle thing, or something to do with the treatment. Fortunately, he was the on-call doctor, and he said if it got worse, or affected my breathing more, call him back. I didn’t need to call back. I took ibuprofen throughout the day, and by bedtime, the pain was down to a light pain occasionally, and the next day it was gone. For that time anyway. Better grab those safety bars on your roller coaster car again.

The next day my stomach was on fire. This was burning. It was acid again, not pain in the sense I think the doctor means when he says call if I get stomach pain. I blamed this on the ibuprofen I took the day before.my system isn’t used to taking that much ibuprofen anymore. Before my kidney removal in 2021, I took ibuprofen regularly for my arthritis, and I took something like Zantac to prevent the stomach pain that goes along with lots of arthritis meds. If people don’t know, Tylenol does not counter inflammation, so it is not an appropriate med for arthritis. So, Tuesday was painful. I tried Zantac. I tried the nausea medicine Dr. Z had prescribed, all to no avail. In the middle of the night, I had to get up twice to throw up. ugh. Eventually, after about 24 hours of this, and vomiting my guts out, everything was fine and has continued to be fine. Hang on, there’s one more incident.

In an effort to keep my body as strong as I can, and to exercise against the negative effects of these flare ups, I started exercises classes with a company called Couch to Active. The owner developed this exercise plan to work specifically with blind people. There are personal classes and group classes. I had a personal session today, and when I got up from some things she had me do lying on the couch—which I’ve done in the past multiple times—I had a big old pain in my back, sort of by where I had that pain the other morning, but more toward the edge of my back. My coach was freaked out, thinking we’d done something wrong in the exercise. I told her about the Monday morning fun, and she thought maybe this was another manifestation of whatever was going on with my muscles in that area. We did some gentle closing things to try to loosen things up, and it did help. Sadly, yes, I took two ibuprofen and am just praying hard that it works right away, and I don’t get stomach ickiness again. I even took some Zantac right away too. Maybe that will help. The pain is already better, so maybe … I guess we’ll see.

So, life has been a big old roller coaster ride the last few days. I’ve had some quiet melting down, alone in my bed at night, stressed about all this, worried that I’m ignoring potential side effects or something, wishing hard that the arthritis would go away. Just from typing all this, every joint in my hands and arms are aching and stiff. I have to stop frequently to straighten and relax the joints, elbows, wrists and all. It’s one of the days I’m feeling down about it all and so tired.

Doug goes home tomorrow, but my wonderful sister moves in again. In the midst of feeling down, I can still feel blessed and thankful to have such a friend and such a sister. I’m so lucky!