DOING NOTHING AND EVERYTHING

I’ve felt a little stupid about some of the medical terms that have been flying around me for the last 2 months, and part of that has had to do with the differences in Swedish and English, and part of it was not having really thought about the differences in terms. I’ve felt that the words ‘inflammation’ and ‘infection’ seemed to be used rather interchangeably, but when I mentioned that to my doctor, he said, “Not by the medical establishment. They mean completely different things.” So I finally looked up their definitions, and like, duh, of course they are different, but the difference has to do with each other. INFECTION is a cause, INFLAMMATION is a reaction (usually TO an infection). If you get an infection from a wound or virus or whatever, inflammation is one of the body’s immune defenses to repair it. So now I know, and so do you.

At my follow-up appointment with Dr Harald yesterday, I explained about the symptoms I have seen creeping back since I was discharged from the hospital on June 15. More blood again in my stool, still not reset, digestively speaking, and starting to experience some urgency issues. UGH. He also told me that a couple of values from my blood tests were too high, and that taken altogether, this means I am NOT better, but still quite sick, even though I feel fine, have energy, can eat, etc. So, he has upped my regimen and I am back on the highest dose of cortisone. Basically starting over with the tablets, which adds another 2 weeks to the cortisone treatment (and the not sleeping, GAH), and tomorrow I will start a course of Zessly Infliximab, intraveneously (biological anti-inflammatory immunosuppressant, a type of monoclonal antibody that works by inhibiting TNF-alpha, a signaling protein involved in inflammation). One hour drip plus one hour watch at the hospital. Will repeat after 2 weeks, then 4 weeks, then 8 weeks, then decide if further needed. On sick leave again starting now until July 20. Journal notes from the doctor indicate that I could actually have Crohn’s not UC. He also mentioned that my case is borderline for being admitted again to the hospital but will wait and see how I respond to the Zessly. When my cortisone dose is below 20 mg, he plans to start Azathioprine for antibody prevention purposes and I’m to have a lung x-ray, and a test to determine that I DON’T have tuberculosis (which double duh, of course I don’t since it’s not 1889. Wikipedia says, however, that in 2023, TB was estimated to have newly infected 10.8 million people and caused 1.25 million deaths, making it the leading cause of death from an infectious disease. Eesh! All those are to establish a baseline, since both Zessly and cortisone are immunosuppressants which means I’ll be at risk of more easily picking up INFECTIONS.

It’s been beautiful all week, though it was cloudy this morning and rained quite hard for several minutes. Blue skies, puffy clouds, a nice breeze. Yesterday was sweltering, too hot for me…it was 92F which is above normal for Sweden. We managed to keep the house cool…I have it down to quite the routine. Close the kitchen blinds in the early morning, open the windows and porch doors. At noon raise the kitchen blinds. At 2 pm, when the sun hits the living room windows on the other side of the house, pull down all of those blinds and shut the porch door. Most of the time in the early afternoon, I also turn on the ceiling fans in both the living room and our bedroom. In the evening, open the porch door back up. If it does get warm/stuffy in the house, we can usually open the FRONT door as well to get a cross-breeze through the house.

It’s supposed to rain the rest of the week and all weekend, but the temperatures have cooled down so it’s fine. Rain’s good for the yard and the garden, even if it’s not so fun for our vacation.

Last night I actually managed to sleep quite a lot. I woke up around 1:30 and 4:30 to go to the bathroom, but fell right back asleep. Woke up around 6:30 am and was too awake after that to doze off again. Plus I had already decided that I wanted to take my samples to the lab in the morning, as their summer drop-in times are super early, so I was up and showered and had breakfast at 8, and then drove to Löberöd to the healthcare clinic. When I got home, I did a bunch of stuff and felt VERY productive! Organizing medicines, ironed a shirt, ordered a sweater, sorted photos, started laundry, finalized something for work, and got my sick leave certificates sent in to HR, and my time reporting corrected by my manager. Read for awhile and had lunch, and then drove to Löberöd again for my physiotherapy appointment for my knees. I had to cancel twice on her while I was sick, so it’s been nearly 2 months since I last saw her and I hadn’t done ANY of the exercises or paid much attention to my knees during my whole intestinal ordeal. Which apparently was a good thing! Because I rested my knees thoroughly and they are actually much better! She was very pleased with the status but to build back some muscle I now have a set of new exercises to start daily.

Now it’s 2:30 and I still have laundry in the dryer and photos to continue sorting, but am taking it easy. I tried to talk Anders to going to Costco (which opened here in Malmö three days ago) to get our membership cards and check the place out (he’s never been in one, and I’ve only been a couple of times with my sister in the US and we had an agenda so I didn’t really EXPLORE the store), but he’s working on finishing the garage painting project. Since I’ll be at the hospital for a few hours tomorrow, and then might meet Camilla for fika, Costco might have to wait until next week. Saturday, we have the AIC Independence Day Summer BBQ party, unless it gets rained out and cancelled.

So even though it’s sick leave/vacation, I’m continually busy with small stuff and little house projects as well as lounging on the couch or the deck, reading and playing iPad games. I’m taking it easy, I swear! There’s a lot of satisfaction in doing these little projects that I never have time for. Still on my list: wash the couch and big chair cushion covers, and all the curtains. Clean out clothes in my closet. Tackle some of the other closets again and drawers and cabinets that have filled up since the last cleanout/purge during the pandemic. What I get done is what I get done…I have 2 more weeks, and not very many plans after this Saturday, so there is ZERO stress about any of it.

Mood: relaxed
Music: Nea—Dedicated