Praise then darkness, and creation unfinished

I finished the steroids yesterday, and am feeling significantly better than the first day or so. I'm trying to do things slowly, so I'm not sure whether I'm doing as well now as a month ago.

I have gone back to more of my PT exercises, including the ones that I can't do sitting down. Most recently, the "single-leg balance" exercise. However, the back of my left thigh is now feeling a little sore.

I'm still carrying the cane around the apartment, and trying not to stand around for no reason when I can sit, but I haven't used the cane for support yet today.

Carmen called a little while ago, to see how I was doing. I told her, asked about vaccine timing, and then realized after I got off the phone that I did have more questions.

What she told me:

Yes, two weeks after stopping the steroid would be a plausible (earliest) date for vaccination. She advised against getting the covid and RSV vaccines at the same time, so my tentative plan is to get the covid and flu vaccines in mid-October, then wait three or four weeks for the RSV vaccine. She recommended the Novavax vaccine, though that recomendation is mostly because of fewer side effects, for people who got bad side effects from the mRNA vaccines.

She didn't have advice on whether I should still be extra-careful about exposure to covid and other infections, she hadn't thought about that until I asked.

So I called Pamela, the nurse at the MS clinic. She said that I should try to avoid sick people for a month or so, and wear a mask if I can't do that. In practice I think that means resuming my normal level of caution (N-95 mask), and maybe hold off on getting my teeth cleaned.* Pamela also said that any vaccination is more likely to be effective if I wait three or four weeks instead of two, but I may not want to wait that long for a flu vaccine.

What I thought of after the call: do I still need to avoid NSAIDs, and if so, for how long? Similarly, is it OK to resume taking the Yuvafem (estradiol) on Wednesday (i.e. return to my regular schedule)? I sent a MyChart message asking about those things.

* I don't currently have an appointment for a cleaning. I need to find out (a) do they even do that at the dentist's office on Beacon Street? (b) if not, is the dentist really going to be seeing people in Watertown Square again? And (c) is it feasible to go to Belmont and see my usual hygienist, without transferring my other care to Gentle Dental? If at all possible, I'm sticking with the current dentist until we're done with the implants.

I saw my pulmonologist this morning, for a routine follow-up appointment. She is happy with how my lungs sounded, and the plan is (a) another CT scan and then follow-up appointment in April, (b) she asked about my plans for fall vaccines, and said I should get an RSV vaccine as well as the flu and covid vaccines, but I should wait two weeks after finishing the steroids before getting any vaccinations; and (c) she sent me home with a sputum cup, for a sample in case the gunk I am coughing up with the help of the flutter vavle gets darker, thicker, or otherwise seems icky (my term, not hers).

I was surprised that Dr. Koster took one look at me and asked about the cane, because she remembered that I wasn't using one in March. Also, when they checked vitals, my blood pressure was a bit high (no surpise, given the context of medical appointment), and blood oxygen lower than I'd like at 93. (Since I started paying attention in 2020, it had been reliably 97-99 until a few months ago.

I started the antibiotic first thing this morning, and the steroid about an hour later. I was already moving better by the time we got to the doctor, which suggests that one or both of the steroid and the doxycycline is working faster than I expected. We took a Lyft both ways, and by the time I got out of the car again at this end, I felt like I should sit down right away, less because I was in a lot of pain than because standing and walking were starting to hurt again.

As a side note, the communicable disease screening part of checking in online for my appointment is back to asking about recent travel, and they've added more symptoms to the checklist, but I still had to ask the doctor to put on a mask. However, when I asked, she said "my pleasure" and stepped outside to get one, rather than arguing with me, so it could be worse.

Update, six hours later: my legs and hips are definitely feeling better, and I am consciously reminding myself not to restart All the Things right away. So, I have done a bit more walking around the apartment, but with the cane, and one (one) carefully selected PT exercise that I do standing up, but with a little support, and I would have stopped immediately if it had started to hurt.

This is basically for my records, because memory is fallible.

This morning, Sat. Sept. 21, standing long enough to do a few dishes while making tea, the backs of my knees hurt (which has been an issue throughout this), but when I walked into the study, using the cane, I noted the backs of my calves also hurt. I had about as much trouble finding an OK position and getting to sleep as the day before, but slept until past 9 a.m., which is good.

First result from yesterday's blood tests: C-reactive protein is "high." That's an automated result from MyChart, and hopefully Carmen will look at this and the other esults and it will tell her something useful. I looked at the "trends" tab on MyChart, but apparently I haven't had that test within the memory of this medical record system (which is back to sometime in 2017).

Saturday afternoon: I now have all of yesterday's test results, except for the vitamin D. Quite a few are either above or below the normal range, some with color-coded graphs and some that just say things like "9.8 (high)." I hope this gives Carmen something to work with. I asked Adrian, if she looked up what the numbers meant, not to tell me things like "it could be x, y, z, or w," because it would only give me more to worry with/about.

[I intend to be adding to this post as time goes on, and will put most of it under a cut tag.]

I talked to Carmen again this morning, and told her that while some of the symptoms have eased (including that I am not running a fever) the parts that still hurt interfere as much with walking as they did on Friday. She is sending me to have blood drawn for tests, at a lab selected for minimal walking between the sidewalk and the actual lab (even though it's further from my apartment than some others).

Carmen told me she was waiting to order the tests until she can talk to her colleagues, in case they want to add any tests--I said I would rather have an unnecessary test than have to make an extra trip, as things are right now. Carmen's current hypothesis is inflammation, so she asked me how I tolerate steroids (reasonably well, fortunately). She and Adrian both think I should loop my neurologist in here, even though I doubt this is an MS flare-up. She thinks that if the cause is a viral infection, I may be fighting it off, but she would have expected better recovery by now in that case. On the other hand, and I only just thought of this, I am on an immune-suppressant drug that means I start with very few antibodies to anything.

Also, it took them long enough to order the labs that, by the time I got there, they weren't taking any more walk-ins. So, that was a waste of time and money, though it hurt less than I'd feared, thanks to the quad cane Adrian bought a few hours ago. The next available appointment at that location is Thursday afternoon, which I took (there was one offered Thursday, and lots of available times for Friday).

I was in the supermarket yesterday, on my way to adrian_turtle's, when my left hip started hurting badly. I had already selected lettuce, and (perhaps foolishly) went on to the back of the store, picked up a quart of milk, paid, and went to the bus stop (rather than putting the lettuce down and heading for the exit). By the time I'd made it to Adrian's apartment (up about a flight and a half of stairs, carefully, one step at a time, I sat down on the loveseat purely because it was closer to the door than the couch.

It was a slow and painful evening, despite pharmaceutical painkillers (naproxen and acetominophen), applying heat to the hip, and moving as little as possible. Adrian kindly did every bit of making our dinner, brought me tea, and so on, which helped physically and psychologically.

I was feeling somewhat better this morning, after a night's sleep, but took more painkillers after breakfast (rather than on an empty stomach). I spent the morning there, then called a Lyft to get me home after lunch. (Otherwise it's two buses plus a few-blocks walk, or bus to subway to bus, and I'm not sure how much walking would be involved within the Harvard or Alewife T station.)

I added a small dose of a muscle relaxant to the regimen, and am keeping track of how much I've taken when using a text file on the computer. (I'm most concerned about the amount of acetominophen, but also keeping an eye on the NSAIDs.) By dinnertime I was feeling enough better to stand up while carving a chicken, but I am still taking small steps and moving carefully.

It's Friday evening; if I am not feeling a lot better by Monday morning i will call my doctor's office. In the meantime, I am going to rest, skip my regular exercises (most of which I do standing) and even leg stretch, and apply more heat.

[this is mostly for my own later reference.]

I woke up with my back hurting enough that going back to sleep was impossible: I couldn't find a comfortable, or even only mildly uncomfortable, position to lie down in. (I tried the living room couch as well, less because I expected it to work than because I was also trying to let cattitude get that last 45 minutes or so of rest.)

It's the sort of pain that, at least combined with being just up and slightly short of sleep, has me crying intermittently, though I suspect on a scale of bad back stuff, 1-10, this is about a 3 or 4.

The pain is between my shoulderblades. I suspect that the lat pulldowns at the gym yesterday are at least part of the cause of this problem. (That's one of the Xpressline machines, an exercise I hadn't done in ages, and even if the exercise isn't inherently problematic for me, I had a lot of weight on it, and some problems at the beginning with the positioning of the hardware.) I have had 400 mg of ibuprofen and a shower; I may add more painkillers before I leave the house this morning.

At this rate, neither sitting nor reclining will be comfortable this afternoon, and this isn't what's meant by "the bread of our affliction."

ETA, 7:30: It's responding well to the ibuprofen, and Cattitude confirms that the pain is where the lats (latissimus dorsi) are. So, use that machine again carefully if at all, take the anti-inflammatories, and don't fret.