The Great Covid Saga, Part II
Apr. 27th, 2025 10:05 amThen Darwin got sick again on Friday. It started with coughing and sneezing, then feeling run-down. The symptoms worsened quickly. We worried it was a cold, and I wondered if =I= would catch it, too. It takes me more than a week to get over a cold anymore, and I don't have enough sick days left at work to handle that. A thought occurred to me, though, and I asked Darwin to take a Covid test. He did.
Positive.
The hell? I did some reading and discovered I was ignorant of one facet of Covid: the rebound. Some people get over the virus, and then a few days later, they come down with it again. It used to be associated with taking Paxlovid, but that idea has been disproven. It's just Covid being a bitch. I had no symptoms myself, but took a test anyway. Negative. Okay, then. If the blogging community will allow me to be a bit self-centered on my own blog for a moment, I'll say I was very relieved. Cold or Covid--I still don't have the sick days. Anyway, I got Covid first and got over it first, so if we were both going to rebound, it seems like I would've done it first.
Saturday morning, I took Darwin to urgent care, only to learn that they can't/won't treat rebound Covid, and you can't go on Paxlovid again so soon after coming off it. There was nothing to do.
I took Darwin back home and put him to bed. We were low on meds, so I went to the store and bought a big pile of cold and flu stuff, along with various you're-sick-you-get-treats foods. Darwin dosed himself with NyQuil and conked out on the bed for most of the day. I sat with him and wrote on my new laptop and delivered food and meds to him as necessary. By evening, he'd lost his sense of taste and smell and developed a high fever, which we dosed hard. He coughed almost continuously until I got some cough medicine into him. I was worried we might have to take him to the hospital. He took more NyQuil and we went to bed.
This morning, he's markedly improved, though still sick. Coughing and run down, mostly. Another Covid test came up positive. I took one. Still negative.
Darwin's parked on the bed again, dozing. Hopefully this saga will end today.
The Great Covid Saga
Apr. 19th, 2025 03:50 pmSaid student's desk is very close to mine, which means I spent a fair amount of time within contagion range for at least a couple class periods. Great. And I had a difficult-to-schedule medical procedure coming up. I began monitoring myself for symptoms. At one point I noticed a faint cough tickle in my chest, but it didn't go anywhere. I checked my temperature the morning of the procedure. Normal. So I went in.
At the procedure, a nurse checked my temperature. 100 degrees. I was surprised--it had shot up that high in less than half an hour, and I didn't feel feverish. Even for Covid, that would be unusual. She tried again with a different instrument and it came up normal. So on we went with the biopsy.
Late that afternoon, I started feeling cruddy, though I had no fever. I took a home Covid test. Positive. Well, shit. Darwin took a test, too. Negative. At least that was good news.
I emailed the biopsy clinic to let them know and had Darwin take me to urgent care. They confirmed the positive results and gave me a scrip for Paxlovid. Ick! I get Paxlovid mouth bad, but it beats being sick for two weeks. I started taking the meds. Saturday I felt really shitty, but on Sunday I felt much better. It meant, though, that I was caring for myself post-biopsy with fucking Covid.
Meanwhile, Darwin started feeling sick, so he took a home test. Positive. Dammit! We went to urgent care, confirmed the diagnosis, and he went on Paxlovid, too.
Monday morning, I was feeling tired but okay, and I'd been without a fever for 24 hours. According to the CDC and the school district, I could return to work. I only have a couple sick days left this year and didn't want to use them up just yet, so I went in.
Darwin, meanwhile, felt horrible and awful all day Monday. Tuesday, too. Wednesday, also. Jeebus.
Friday afternoon, =I= started feeling shitty again. Apparently there's a thing: Covid Rebound. You think you're over Covid, but then backslide for a couple days. At least it was landing on a weekend.
This morning, I woke up and looked at the clock. 10:45! Man. Clearly, both of us needed the sleep, and I'm glad we could get it. Today, I'm feeling improved but still a little off. Same for Darwin. I hope this is over tomorrow!
The Great Neck and Shoulder Saga
Apr. 19th, 2025 03:34 pmI kept hoping it would just fade away. I tried OTC painkillers and hot showers. Nothing helped. I finally called a chiropractor, but the earliest "new patient" appointment wasn't until the following week. I made an appointment with a massage therapist, and got in on the same day. The therapist was a Russian woman who seemed overly worried that I was going to make a demand for something more than a massage. I told her about the pain, though, and she went to work on it. When the session ended, the pain was almost completely gone. It was such a relief! I tipped the therapist $20 and went home.
The next day, the pain came back. Shit.
I got through the weekend and went into the chiropractor. He massaged me and wrenched me around, and it made the pain better but not entirely absent. He said I should come back a few more times for more adjustments. I came in again, he did his thing, and again it helped, but the pain was still there. I should come back. But the following week was already full of medical appointments, and I couldn't stand the idea of one more, so I scheduled for the following week.
And then came the Great Biopsy Saga. (See previous entry.) I was put under general anesthesia for it. When I got home, I realized the pain was gone. It hasn't come back, either.
I think the propofol forced the muscles in my neck and back, the ones that were knotting up and causing the problem, to relax completely, wiping the pain away.
I have to say that was a welcome side-effect of the procedure!
The Great Biopsy Saga
Apr. 19th, 2025 12:57 pmAll this means I have to get a biopsy done every other year. It's an awful process, but as cancer journeys go, it's pretty mild--as long as you take the right precautions. For my first biopsy, the clinic used general anesthesia as a matter of course. No pain during, though I had some after.
For my second biopsy, though, I'd changed providers, and the day before my appointment, I asked about the anesthesia, and the nurse acted surprised. They used local anesthesia and were startled that I wanted general. I could reschedule, but the next such appointment wouldn't be for a few months. I reluctantly decided to go through with the current appointment. This was a mistake. The clinic insisted I wouldn't feel a thing after the first shot of lidocaine, but they were wrong. I felt everything, and I was yelling in pain. Through 20 core sample. TWENTY! (The usual is twelve.) The staff continued to act surprised, as if I were the only person in the world who felt pain in a biopsy. Fuck them.
So when it came time to set up this one, I insisted on general anesthetic. Again I got surprise. "Are you sure? This is usually done with local."
"No," I said. "It definitely is not. Schedule it, please."
This actually touched off a bunch of phone calls. They had to move the biopsy to a different location and coordinate with them and-and-and. In the end it was scheduled.
As regular readers know, I was abused by medical staff while under anesthetic during two different operations. This has given me a case of medical PTSD, especially when it comes to general anesthesia. You're probably wondering why I didn't just go for local anesthetic, then. The answer is ... it's complicated. I have to choose between awful anxiety and awful pain. Which one, which one? In the end, I settled on anxiety for the simple reason that incoming awful pain would ALSO give me anxiety, and I'd rather deal with just the one.
In the weeks running up to biopsy, I was okay, but as weeks turned to days, I became more and more uneasy. The two days beforehand were the worst, and I lived on Xanax. I know the anxiety is misplaced, that the kind of abuse I went through is extremely rare, that the vast majority of medical workers want to help. Tell that to my emotions, though. It always feels like the operating room staff are just waiting for me to fall unconscious so they can say and do anything they like.
Also, I discovered the clinic was planning to conduct a different (to me) kind of biopsy. My other two were transrectal. This one would be transperineal. Transrectal has a 5% rate of infection, you see, and transperineal has virtually none. But this clinic didn't mention this fact to me. It took me a while to tell myself that this was because they had dropped trans-rectal biopsies some time ago and made transperineal the standard, and most patients didn't know or care about the difference, so they had no reason to mention it. Until I was able to convince myself of this, though, I was in another anxiety overload.
A couple days before the biopsy, I emailed the clinic and briefly explained my situation: that I was an abuse survivor and came out of it with bad PTSD and white coat syndrome. In order to make this bearable for me, I wanted to be awake until just before the biopsy needles went in. After a bit of back-and-forth, the clinic allowed that this would be fine.
The night before the operation, I didn't sleep at all. Not even a doze. I stared at the ceiling all night long, unable to think about anything but the biopsy. It was a long, long night.
Finally, it was time to get up and leave. I did have the go-ahead to coke myself up on Xanax, so I did. By the time Darwin drove me to the clinic, I was a little floaty.
I also had my little device with me. It's a recorder disguised as a flash drive. It looks like a flat stick. I habitually put it inside a finger splint and use it to record all operations so I can at least hear what happened, even if I can't see it. (When I mention to medical workers that I smuggle a recorder into the operating room, they inevitably react with horror. How dare I? My response: why is it that every single person in that room gets to know what happens to me but I, the one person who is most involved, shouldn't know a thing? Again, fuck you.) I slipped it into the splint and when the nurse inevitably asked about it later, I gave my usual answer: "Yeah, I hurt my finger and need to wear this for a while." I've never been challenged about it.
This clinic didn't allow family to be anywhere but the waiting room, so I had to go back to the prep area by myself. I made sure the recorder was working and got into the gown and all that. I'm an experienced surgery patient by now, and I know it's easiest to wear slip-on shoes, a t-shirt, and jeans with no belt, nothing else. Belts and sweatshirts and glasses just turn into crap to keep track of when you're groggy. Keep it simple.
The hospital had a neat little trick--an air circulator that plugged into the gowns like a CPAP machine. It circulates warm air through the gown. This keeps the patient warm even in a cold operating room and the staff doesn't have to constantly get blankets from a warmer. Nifty!
When I was ready, the usual parade of nurses, anesthetists, and the doctor began. They were all aware of my preferences for the prep, for which I was appreciative. Most men find the prep for a transperineal biopsy to be embarrassing, but to me it's worse that someone is doing the embarrassing stuff to me while I'm unconscious and have no control. So the doctor positioned me on the table (eesh, I get nervous just typing this) and ran through the prep. It went fine. Then the anesthetist said it was time for the propofol. She administered it, I got dizzy, and then I was waking up in the recovery room. I remember asking for Darwin but getting no answer. I slept for a little bit, and then a nurse was there with a wheelchair telling me it was time to get dressed and go. I don't actually remember getting dressed (this is one of the many reasons why I hate anesthesia--it fucks with your memory and steals parts of your life), but I remember getting into the chair and being wheeled to the exit, where Darwin was waiting with the car. There were no complications during the biopsy, according to the staff. The doctor took only twelve cores, not twenty like last time.
At home that evening, I called up the recording on my computer. I skipped through the parts I was awake for, found the place where I was anesthetized, and listened. A lot of OR teams talk very little during the operation (the case where I was abused was definitely an outlying exception), and that was the case here. I heard the biopsy gun click, followed by a report from the doctor where the sample had come from, with the nurse repeating it and (presumably) writing it down. More clicks and reports, and then I was being wheeled to the recovery room. When I arrived, one nurse said to another that I had strangely asked to be awake during the pre-surgery prep. "He has PTSD or something," she said.
"Is it a control thing?" asked the other.
"It's probably control, yeah. He's probably afraid that--" here, she stopped herself. "Well, I'm not sure what he was afraid about."
"Uh huh," said the other nurse.
And that was all of it. I'm good with that. They're certainly allowed to exchange information about patient behavior in a non-critical manner.
I did tell the doctor that after the other biopsies, I got a fair amount of pain, so I wanted something stronger than Ibuprofen for a couple days. He gave me a scrip and I did get some fairly heft pain later. The pills helped.
One of the things that pokes at my anxieties about hospitals is the way they try to control your behavior. I know it's to maximize my care, but I also know that a bunch of it is overkill, and it creates feelings of enmity with me, and I try to work against what they tell me. For example, this particular clinic said that before the biopsy, I should avoid sexual activity for a week before and for a week after. Two weeks total! I'd never once heard about avoiding sexual activity before a prostate biopsy (before a PSA test, yes, but not before a biopsy), and I surfed all around the internet to check on this. No urology clinic I found had a cessation of sex in their pre-op instructions. As for after, they said to avoid sexual activity for three to five days. Not a full week.
I'm putting a chunk of this behind a cut screen because it gets very biological. I cope with this stuff by writing it down, which is why it's here. But you can skip it.
( Read more... )
Okay, we're back from the cut. A couple days later, I got an alert that I had new results in my patient portal. Oh yeah--what was the cancer doing? Weirdly, I had been more freaked out about the idea of having a biopsy than I was about the actual cancer. But the alert made me suddenly uneasy. I knew the results would be written in medicalese, but I'm fluent in that language thanks to growing up in a medical family, so I knew I'd be able to read them. Nervously, I called them up.
All twelve cores came back as "benign prostatic tissue." In other words, no cancer anywhere!
I joked at the last biopsy that the all the needles were snatching the cancer right out of there. Now it seems to be true! In all seriousness, though, it's very doubtful. The needles just missed any cancerous tissue. But that would also mean the cancer isn't spreading. I'll confirm with my oncologist at our appointment next week.
At the moment, I'm not feeling any pain from the biopsy, and I'm hoping the other side-effects are gone. I also got through it without melting down. We'll call it a win!
Oh, the Medical
Apr. 9th, 2025 09:32 amI find I still shut down when I go into any kind of medical office. When I'm in the waiting room, I just stare at the floor. When I'm asked a direct question, I give short, toneless answers. I do ask questions, but also tonelessly. I don't make small talk. I don't make jokes. (I have absolutely no sense of humor about medical situations. It was burned out of me.) It's hard for me to rouse myself.
I don't even realize I'm doing it sometimes. I was most of the way through the chiropractor appointment before I noticed that my eyes were on the floor and I only looked up long enough to follow the chiropractor's explanation of the x-ray.
But it's still the biopsy that's making me panic.
I know the medical community means well when practitioners do their best to downplay side effects and pain and everything else. They know a fair number of people will be scared off if they don't downplay, and it could mean someone dies as a result.
"Oh, you won't feel a thing." "You'll be up again in no time." "It's a quick, harmless procedure." "The side effects don't last long and they're minor. Nothing to worry about." "Outpatient surgery is nothing at all."
I've been hearing this for the last several years, and it's always a lie. The last time a practitioner told me the truth was when I had a cholecystectomy. The surgeon said the recovery would be painful and last at least two weeks, possibly three, so be ready to sit on the couch for that long. He was right.
When I had my shoulder surgery, the surgeon assured me that the most painful part would be the first two or three weeks. After that, the pain would subside greatly and fade completely in two months, maybe three, and I'd have mobility back by the end of that time. But the pain--bad pain--went on for nearly two years, and I didn't regain full mobility for another year.
This was also what they said for my kidney stone operations and the first two biopsies. "The pain will be over quickly." "The side effects are harmless." But the pain was debilitating, and the side effects were spectacularly awful.
It would be easier to handle this shit if I didn't have to guess what the practitioner really means. Use the word "pain" instead of "pressure" or "discomfort," folks. Say up front how bad it can be. "The effects are usually minimal" is too vague. "We hope for the best, but you need to understand that this and this and this can definitely happen. We'll do our best to minimize it, but we can't always do that" is better.
The biopsy is sending me into panic mode again. I get at least one wrenching hit of anxiety a day right now, and I'm leaning heavily on Xanax to keep me functional.
The first time I had a biopsy like this, the urologist said there'd be no pain because they used general anesthesia, and by the time I woke up, the pain would be gone. This was only half true. I was in a fair amount of pain for a couple of days. And the other side-effect was awful. I was terrified over it for the first several days, despite reassurances from the urologist that it was harmless, and it wrecked my sex life for two full months. (If you're wondering about the exact nature of the side-effect, look up "side-effects of prostate biopsy," and you can probably figure it out.)
The second time I had this biopsy, it was at a different clinic, and I didn't find out until the day before that this clinic only used local anesthesia. I was faced with going through it this way or with rescheduling it for months later (drawing out the anxiety further). I went through it. The surgeon assured me it would only hurt when they injected the lidocaine, and then only for a few seconds. But he was wrong. Lidocaine doesn't work well on me very well, and no doctor ever gives me extra, no matter how much I explain. I yelled during the lidocaine injection, and then I screamed when they extracted the first core. So they gave me another lidocaine injection, and I yelled in agony over that one. (Darwin was in the next room and he could hear me, and it upset him enormously.) Then they started extracting the cores again, and IT STILL FUCKING HURT. I was in pain and I was angry. They had deliberately avoided avenues that would have made the procedure painless, or at least low-pain. The only positive that came out of this was that I told the surgeon before-hand that last time the awful side-effect lasted much longer than usual, and if he could do anything to change that, I'd appreciate it. He said he would try. The side-effect was still awful, but it did clear up in three weeks instead of six.
When this next bi-annual biopsy came around, I said I would need general anesthesia. They hemmed and hawed over it, but I refused to budge, so they "allowed" it. Fuck them. It took a long time and several phone calls to schedule, but at last it was done. Then I found out the procedure would be done in a new way that reduces the risk of infection--good--but makes the pain way worse--bad. (I found out that last by reading a couple studies on the new procedure. The hospital didn't mention it. Of course.) Patients also rated the new version as much more embarrassing. And the usual way is still to use local anesthetic. Fuck them. I'm glad I demanded general anesthesia.
But here's the thing. The crippling anxiety comes not as much from the pain as from the upcoming side-effect and the anesthesia. I was abused when I was under during my shoulder surgery, remember, and while that anxiety has lessened, it hasn't entirely faded. I doubt it ever will. Writing about it here helps a little, which is why I do it.
I try to tell myself that compared to 99.9% of everyone else who lives with cancer, I have it sooo easy. Chemo wrecks you for months, even years. Cancer meds come with side effects that go beyond awful into horrifying, and you have to take them for upwards of five years while my little side-effect lasts a couple months at most. But pointing out that others have it worse rarely makes you feel better. Human psychology just doesn't work that way.
I'm trying not to count the days until Friday, but I end up doing it anyway. Maybe this time it'll be better.
ETA
Today I got an estimate from the hospital for the above biopsy. The grand total is a comfortably precise $25,569.21. Fortunately for me, I have insurance.
Really, Really Nice News
Mar. 14th, 2025 01:07 pmOncology Update
Mar. 8th, 2025 11:18 amOncologist: Your PSAs are __, and your last biopsy was two years ago, so you're up for another one.
Me: Right.
O: I'll have my team contact you about setting that up.
Me: Okay.
O: Have your medications changed since our last appointment?
Me: Nope.
O: Okay, then. We'll be contacting you about the appointment.
And ... done.
I'm glad it was a video appointment. If I'd driven all the way to UM Ann Arbor, hunted for parking, threaded through the huge and labyrinthine palace of UM Medical, waited in the waiting room, and then seen the doctor for 90 seconds, I would have been rather put out.
For the record, I've been "downgraded" to barely having cancer. I'm on the observation list, and there aren't any indications yet that I'll need treatment. We're hoping it stays that way!
What, Me Ulcers?
Jan. 21st, 2025 01:22 pmMy doctor examined and frowned and examined and frowned and in the end, he said, "I have no clue what this could be. Are you feeling it now?"
"Yes."
"The only thing I can think of is maybe an ulcer, but even that seems remote. Still, we should get you checked for it. The clinic can put a camera down your throat and check."
"Oh," I said. "Good thing I don't have a gag reflex."
"They put you under for this one," the doctor said. "Here's the clinic's number."
Hoo. As you know, Bob, anesthesia is a major source of anxiety for me, and rightfully so, considering the horrible things the staff at That One Clinic said about and did to me while I was under. So just making the appointment got me a little upset, especially since the doctor said this was a "just in case" kind of test.
A few days later, I was diagnosed with a urinary tract infection.
Men don't often get UTIs. I've certainly never had one. But when I saw blood in the toilet bowl, I proceeded with some haste to an urgent care clinic. (I wasn't in pain, so I didn't go to the ER.) Urgent care ran a couple tests and determined I had an advanced UTI. Men, you see, often don't show symptoms until the condition becomes advanced, even to the point where it's climbed up to the kidneys. It also turns out that men who are prone to kidney stones are also prone to UTIs from your own internal bacteria. Well, that's special, innit?
The urgent care doctor put me on antibiotics and I did the cranberry juice thing in case it was helpful. The infection cleared up in a few days. The strange pain also went away. Hmmm.
I emailed my urologist to report what had happened. Could have been the pain problem? If so, did I still need to do the stomach camera thing?
He responded that a UTI wouldn't ever cause the pain I was describing, so I should go through with the procedure. Sigh.
Yesterday was procedure day. I'd been growing increasingly nervous, and I kept telling myself that this was an easy, straightforward process, and it was through my mouth instead of down below. I was still severely shaky by the time we arrived at the clinic. I had also disguised my little recorder as a finger splint so I could record everything that happened while I was unconscious.
For the prep, I was supposed to eat nothing for the eight hours beforehand, and have no liquids four hours beforehand. I followed this. I ate a good breakfast and was finished eating before 7:30 AM, exactly eight hours before my 3:30 PM procedure, and I stopped fluids at 11:30. At the appointed time, Darwin drove me to the clinic.
The staff at the clinic was very nice. Also, I didn't even have to take off my sweats or even my shoes--only my shirt, and that only so they could attach a heart monitor, which made me feel better. The IV went into my hand, which was also very nice. I prefer that over the elbow. And even nicer, they said they used propofol only. No Versed. I hate Versed because it wrecks my memory (see anxiety above), and was happy to hear this news. So three yays in a row! I still activated the recorder taped to my finger.
They wheeled me into the operating room, got me positioned, put a guard in my mouth, and injected the propofol. I got dizzy as I always do, and then I was back in the recovery room feeling blurred and woozy. Oddly, I remember dreaming, something people don't usually do under anesthesia.
It turned out that there was still food in my stomach, even though I'd followed the directions to the letter. As a result, they weren't able to examine my stomach very well. However, they did find multiple ulcers on my esophagus. This surprised me quite a lot--no one in my family gets them that I know of.
But I =am= under considerable long-term stress a lot. (More on this in a later entry.) And this would explain the strange pains. My doctor was right.
The clinic put me on massive doses of Prilosec and sent me home. I need to go back to try again in a few weeks so they can get a better view of my stomach, and this time I'll have to go 24 hours on a liquid diet. Today I listened to the sound file and heard nothing strange, hurtful, or even interesting. So, good!
Though I do have ulcers.
Non-Stroke
Nov. 10th, 2024 07:24 pmBiopsy 2023
Apr. 29th, 2023 10:54 pmLast time I had this done, the doctor said, "We can do this in the office without anesthesia, or we can do it in the hospital with anesthesia."
"You want me to be AWAKE when you pop a needle into my prostate twelve times?" I said. "What kind of fool do you think I am?"
And so I had the anesthesia. But anesthesia comes with its own complications for me--the crippling terror that comes when I'm forced into unconsciousness and have no idea what a roomful of people are doing to me or saying about me. (See: shoulder surgery rape jokes, December 2021.) I got through it with lots of Valium beforehand and by sneaking a recorder into the operating room so I could listen to everything that was said. (Unlike the shoulder surgery team, this group was professional at all times.)
When I moved, I changed medical providers to UM Medical, but my records transferred, so when it came time for the biopsy, the doctor's office called and said they set up a lab order for me to get a PSA test first. I did this, and when the results popped up on my patient portal, I saw that my PSA levels had gone way down, from a 7 to a 4.7. Well, cool! Maybe I wouldn't even need the biopsy.
But when I talked to the urologist, he said, "Remember, you're on medications that reduce PSA levels. You have to double your score. It's actually 9.4." It had gone up by more than two points in the last six months.
Now I was in anxiety overdrive. The cancer was likely getting worse.( Read more... )
Stress Cooking
Mar. 26th, 2023 06:07 pmIt started with a batch of banana muffins for breakfast. I like my recipe for these. Bakery muffins are basically fruit-flavored cupcakes and make your teeth ache. My recipe uses minimal sweetening, and they're very good, especially hot from the oven and slathered with butter. A little sausage on the side and it was a perfect breakfast.
We were almost out of bread, and what we had was going stale, so I whipped up a new loaf in the bread maker. When it was done, I pulled it out and set the machine to making some dough with added minced garlic. Then I went downstairs to run and do stupid PT exercises.
Finished up and showered just as the dough was finishing. I let it sit in the machine while I got out chicken, wine, more garlic, mushrooms, and onions. Chicken breasts are so huge these days that one is more than enough for Darwin and me, and they're so thick, you have to slice them in half sideways so they cook without drying out the outer part and leaving the inner part raw. I sharpened my big knife and zipped it through the breast until I had four manageable pieces.
I fried them with salt and pepper in olive oil, removed them from the pan, and added more oil. When it was hot again, I added the onions, garlic, and mushrooms. They sizzled nicely. When everything was tender, I sprinkled in flour, waited a few moments, then poured in Marsala and deglazed the pan. That done, I added beef broth (which is weird, considering this is a chicken dish), let it thicken, and returned the chicken to the pan. Chicken Marsala!
While that was simmering, I set my iron grill sheet on the stove and let it heat. I pulled chunks of the bread dough out the maker, flattened them, smeared olive oil on them, and dropped them on the sheet. In no time at all, I nice batch of naan.
Put together a salad, set the table, and we had a very nice dinner.
What else shall I make?
Shoulder Surgery 24 (The Best Laid Plans)
Dec. 4th, 2022 08:01 pmThe best laid plans...
I arrived at the clinic well before the appointment, checked in electronically through the patient portal app, and ... waited. And waited. A nurse finally brought me to an examination room, where I waited some more. They were way, way behind. I don't object to this, per se. I know unpredictable stuff happens. But it seems like if they get more than half an hour behind, there should be a way, in this day and age, to send out an automated alert to the rest of the patients that day to say there was no need to rush to the clinic.
At last Dr. P-- came in. He showed me the MRI images and confirmed that the tendon was inflamed. He said he couldn't predict when the problem would end, only that it probably would. Eventually. Some time. This heartening news was followed with, "I don't recommend cortisone. I don't think it'll help much, and it might do some damage." The inflammation, you see, isn't really inflammation; the operation made the tendon rework its own tissue into a different configuration that mimics inflammation. So no shot. Live with the pain.
He also said I need to return to physical therapy.
My shock and dismay must have registered on my face despite the covid mask because Dr. P-- hurried on to say that there were options. I didn't have to go into the PT clinic regularly--I could "just" do the exercises at home and visit the clinic every two or three weeks.
I felt like I'd been punched in the stomach. I hadn't realized how much I'd been anticipating a completely different scenario, one that ended with the pain ending and the words, "Your shoulder will regain strength on its own now--no need for PT." Instead, I was getting the exact opposite--more PT, more time lost, more pain.
I sat rigidly upright to keep myself under control. A while later, my ankles started hurting, and I realized I had hooked them both around the chair legs so hard, I was practically bending the metal. I made them relax.
"What do I do about pain, then?" I asked. "I'm already taking Meloxicam and ibuprofen."
"You shouldn't take more ibuprofen if you're taking Meloxicam. They're both nsaids. Does the Meloxicam work?"
"I don't know. The pain isn't constant unless I move my arm in certain ways, so when the pain fades, I don't know if it's because it just decided to fade or because I took meds."
He had no other recommendations for pain. He also said that I really didn't need to see him anymore--there wasn't much he could do. The physical therapist would be better at handling stuff.
This idea I flatly rejected and said I needed at least a check by the doctor every few months until I was completely healed. I already knew that if I didn't make another appointment right after the current one and tried to call for one if/when I had serious trouble, it would take months and months. Better to have an appointment on the books already. Dr. P-- reluctantly agreed.
"How often should I be doing PT at home?" I pressed.
"Most days," he said.
I didn't bother to ask how long. The answer would only be some version of "fuck if I know." Back at reception, I made another appointment for March and marched out.
It was in the car where I lost it. It seems like I cry and scream in parking lots a great deal.
We're now approaching the one-year anniversary of the surgery. Two days ago, I started the home exercises again. Half an hour of exercises, fifteen minutes of stretches. Yesterday during the planking pushups, I had to stop in mid-push to fight off a wave of anger and frustration.
And now I'm back at it. Again.
Shoulder Surgery 25 (Pause to PT)
Nov. 23rd, 2022 09:48 amThis is a good thing. I don't have to drive to Ann Arbor twice a week and go through an hour of lifts and stretches. I don't have to add half an hour of exercises to my daily run. I get home from work, I do a run, and I'm done for the day, and it's not even 4:30.
I should be happy about this, but really, my feelings are mixed. I know my shoulder and arm aren't up to full strength, and I worry that pausing or stopping PT will mean I won't get that strength back. I definitely feel the strain--and pain--when I lift anything more than three or four pounds the wrong way. (When I mentioned this to the doctor, he said, "Then don't lift that way," which is decent medical advice, but thing is, I would like full strength back, thanks. I shouldn't have to spend the rest of my life with a weak right arm.)
On the other hand, a major burden has lifted. I'm no longer spending five and six hours a week, plus travel time, in physical therapy I hated.
Why is it not completely a thrill? I've been doing this for sixteen months. For a year and a half, my life has been bolt out of work and run to PT, then arrive home, tired and sweating and in pain, and by the time I showered and dressed, it was after 5:00--time to make supper. So my days started at 6:00 AM and I ran non-stop until 6:00 PM. For sixteen months. This made me feel ... helpless. Like I had no control over my schedule or my life. Wrenched daily from one even to the next, doing shit that felt scary or even degrading. ("Here, lift this one-pound weight. That's all someone in your shape can handle. Then I'm going to hurt you a bunch, but that part of the recovery process, so put up with it, you weak little shit.")
After a while, it becomes your life. When it's lifted, you don't know how to let go. I get mad when I think about all the hours I put in (six hours a week times 78 weeks = 468 hours, which is more than ten 40-hour work weeks, or 20 days of 24 hours). How much could I have written in that time? How much could have I read? How much harp could I have played? How much could I have just rested when I needed to? Because the pain is still there, it feels like I completed 468 hours of PT for nothing. Wasted time. Lost time. And I still do an hour a week of talk therapy. Been doing that for a year, so add another 50 hours or so. And the amount of time I've spent on the phone and the amount of time I've spent at the doctor's office and it all adds up to so much time taken away from me.
It's hard to let go anger and frustration you've gotten on a daily basis for sixteen months, even when a chunk of the anger/frustration's source is over. Or at least, on hiatus.
I'm working on that. Being upset doesn't make life better for me. The only thing it does is ensure that I don't give up and I don't let the medical people give up. But it's not something that happens overnight.
Shoulder Surgery 24 (Redux)
Nov. 23rd, 2022 09:13 am1. Apparently, 85% of patients report satisfaction with shoulder surgery. That means 15% have continual problems. I seem to be one of them.
2. Based on my most recent MRI, the doctor still doesn't think that exploratory surgery is necessary (good), and a second shoulder operation (which never goes as well anyway) would be a bad idea.
3. The doctor suspects the main tendon is still inflamed, which is causing the problems, but he isn't sure. He advised taking more anti-inflammatories. If it is indeed inflammation, a third cortisone shot might help, or even solve, the problem, but he didn't want to give me one unless he was sure the tendon was inflamed.
4. He wouldn't prescribe more painkillers. "As surgeons, we only prescribe meds post-surgery, and you're past that phase. You'll need to talk to your GP." (I later did, and he prescribed more Meloxicam, but nothing more powerful.)
5. Because the pain isn't going away, I need to "put a pause" on the physical therapy.
So what do we do?
In the end, I paused the PT and was scheduled for another MRI. I got an appointment only a day later and went in for it, but the first available appointment for follow-up wasn't until the Wednesday after Thanksgiving.
In the meantime, however, the MRI results showed up in my patient portal. I untangled the medical jargon--here's where it's an advantage growing up in a medical family--and saw that, yep, the tendon is inflamed.
Next week I see the doctor, then, and he'll probably give me the cortisone shot. I hope that ends it!
Shoulder Surgery 23 (Harp)
Oct. 13th, 2022 09:36 pmAfter an involved discussion with my primary physical therapist, we decided I could start coming in just once a week, though I still need to do daily exercises at home or at the gym. I've noticed I'm about an inch or so away from pre-surgery mobility with my bad arm when I reach behind and up my back, though it still hurts to reach that far. I was taking all this as progress.
Today, the therapist asked me update questions. "How difficult is to do this? Do you feel pain when you do that? How well are you able to perform daily activities?" To the last, I said that most activities--running, biking, computer work--didn't cause me problems, but others did, including playing the harp. I explained that I couldn't play very well because the correct arm position for play causes me pain.
As part of the regimen for the day, the therapist also had me do a different stretch. I stood with my back against a wall and was supposed to reach up with my elbows bent so that the back of my arm and hand were also flat against the wall.
I couldn't do it. I couldn't even come close. Not only did it hurt like hell, my arm simply wouldn't move that way. (My good arm could do it without trouble.)
I became enormously upset. So far, I'd been able to do every stretch or exercise they'd handed me. It was just a matter of degree or intensity. But this I couldn't do. It felt like a gut punch, as if the last ten months (TEN MONTHS) of work meant nothing. I shut down and spent the rest of the session nodding or shaking my head or giving one-word answers to questions. I fled the clinic the moment we were finished.
A bit later at home, I got an email from the therapist. She said that she had discussed my harp playing with the head of the PT team, and that I could play as long as I followed certain instructions, which she attached. They involve stretching before playing, playing short runs, stretching and icing afterward, and keeping track of how long I could play and then slowly increasing my time.
I lost it again. I slumped over the computer, trying not to scream or cry or both.
Why was I so upset? Because something central to my life, something that gave me pleasure and relieved stress and helped me in a thousand other ways, had abruptly been yanked into becoming a tool for the physical therapy I both hate and fear. I can't just sit down and play my harp. No, I have to do extensive stretches and warmups. I have to monitor my playing time. I have to do cooldowns and icings. Playing the harp for ten minutes has turned into a 30-minute chore. There's no joy or pleasure in it.
The email also forced me to face something I'd been ignoring. I haven't played Corey since the surgery. That's ten months. I haven't even tried, or even thought about it. At first it was because I was in a sling and couldn't even go to the bathroom without extensive preparation, let alone play a harp. But once the sling was off, I still avoided Corey. I didn't consciously do it--I just didn't play. The email made me realize that it was because I'm afraid that I can't play anymore. The pain stopped me, and so I stopped trying. Now I've gone ten months without touching a string for fear of pain and failure. The harper's calluses on my fingers are gone. My fingers are stiff. I'm forgetting the music.
My playing has hit both a physical and an emotional wall. I don't know how to break it down--and I hadn't realized until today how thick that wall has become. I could march into the family room right this moment, sit down, and put my hands on the strings, sure. Nothing is physically preventing me. But just thinking about it knots my stomach and makes me feel a little sick. The combination of fear and the new connection of my harp to PT freezes me.
I feel like I've been robbed. A major part of my life is gone. I don't know how to get past this. I suspect I'll eventually manage to coax myself into sitting down and trying to play, and I might even be able to make recognizable music. But it'll be nothing like I used to do--and it'll be a PT chore. That makes me angry and depressed all over again.
I don't know how to handle this. I do know that I'm not handling it well. It's like abruptly realizing that I've had a bleeding wound for the last ten months, and I don't understand how the hell I didn't see it before, and I don't know how to stop it bleeding and I'm trying not to panic.
Something new to talk about with my counselor, I suppose. But in the meantime, I'm still not playing.
These meds are replete with side-effects, though, and I'm starting to wonder if the side-effects are worse than what they're treating. Three meds I'm on can cause dry mouth, and at least one of them does. Two others can cause dizziness, and they do. When I'm going a good clip on my treadmill and stop suddenly, I sometimes get dizzy and my vision dims. It never lasts more than few moments, but it's unnerving and definitely no fun.
And one medication causes nausea and loss of appetite. That's supposed to wear off in a week or two as the body adjusts. It hasn't for me. I have this continual, low-grade nausea, and I only rarely actually feel hungry. Often just the thought of food makes me grimace.
I don't feel up to eating breakfast most days. I bring a bagel sandwich to work, in case I suddenly feel like eating, and I always still have it by the end of the school day. For lunch, my habit is to bring a frozen microwavable meal, and I brought one on the first day of school, but I had no interest in it by the time lunch came around. A couple days later, I finally put it in the work room freezer, where it can stay until I feel like eating it. Most days, I make myself eat some sandwich crackers.
After work, I sometimes feel a bit hungry, and I'll nibble the bagel sandwich. Sometimes I can eat the whole thing, but often I can only stand half of it. Evenings I do get more hungry, but never so much that I feel like cooking. I make small, easy meals, and I eat maybe half of what I normally do.
The foods I can stomach most easily are simple carbs (which is the polar opposite of what diabetics are supposed to eat). Sugary kid cereals sound good, so I eat them for a snack, and make myself drink all the milk.
I still run, and I still have physical therapy. The latter has become more strength-based instead of movement-based, and my smart watch tells me that I get about a half hour of aerobic exercise, so on PT days, I cut my run down from three miles to two.
All this means that I'm losing weight. Since going on this drug, I've lost seven pounds. This morning, I weighed myself and saw I'd lost another half pound. I now weigh 180. I was at 187 when I started the medication. (At my heaviest, I was at 215.)
This is good and bad. The weight loss is good. While I'm outwardly happy in the mid-180s and have sworn never to get above 190 again, my inner "it would be nice, but don't kill yourself for it" goal is the mid-170s. That looks within easy reach now.
The food part is bad. I worry that I'll lose too much weight! I also don't LIKE this new relationship with food. I love to cook, but not when I'm nauseated. I've basically lost interest in what's been a major hobby for a big part of my life.
Today, for example, I managed a bowl of cereal for breakfast and a banana for lunch. I ate half the banana, put it down, and forgot about it. When I realized what I'd done, I made myself eat the rest. I checked my blood sugar. It was 87. And I'm not at all hungry.
I have an appointment with my endocrinologist next week, and I think we need to talk alternatives to this drug. I'm also going to make appointments with my other doctors about the other side-effects.
Mixed Blessings
Aug. 31st, 2022 03:45 pmI'm Type II diabetic, but just barely. I take meds for it and try to be careful about carb intake. A few months ago, I told my endocrinologist that I was tired of taking big handfuls of pills every day. I take pills for diabetes, to protect my kidneys from diabetes, for anxiety and depression, for kidney stones, and for other urological reasons. It's a LOT, and I've been trying to figure out how to cut down.
The doctor said we could combine two of the diabetes drugs I was taking into a single daily pill. I was up for that! So we did.
A strange thing happened. The next time I went to the urologist, he said the levels of sugar in my urine were off the charts. I told him about the new drug, and he nodded understanding. The drug makes your kidneys pull sugar out of your blood and excrete it. This worried the doctor a little. He said this kind of thing can cause strain on the urinary system, including bladder spasms.
A while later, I found myself having to run to the bathroom more and more often. It became unusual for me to last an hour. Darwin noticed because whenever we went someplace, the first thing I did on arrival was hunt down a bathroom, and I usually had to go again before we left.
I couldn't keep that up. Certainly not with school coming up. I talked to my endocrinologist again and asked what we could do. She suggested switching back to one of the pills and a weekly injection of Trulicity, which I could administer at home. She had suggested this several months ago, in fact, but at the time I was going through absolute hell and the thought of adding a weekly shot to my platter was just too much. Now I figured I could handle it.
She told me that common side-effects include nausea and loss of appetite, but they fade after a couple weeks. Another side-effect is weight loss. (See the above "loss of appetite" effect.)
I got the drug and injected myself on a Saturday morning. That night, I had really bad nausea and sweating. It was awful. I was up most of the night with it.
The next day, things had improved, but the appetite loss was kicking in. Very few foods sounded any good. Weirdly, kid cereals like Cap'n Crunch and Corn Pops sounded tempting, so I bought them. Most days, lunch didn't interest me at all, and I might have a piece of fruit, nothing more.
The nausea has stuck around. It's a low-grade nausea that continually hovers at the edges. All the literature says the nausea should only last about two weeks. I've been taking Trulicity for just under a month, and it's still causing me the problem.
And I've lost weight. A big chunk of it. I was at 187 when I started Trulicity. Now, less than five weeks later, I'm at 181. Last year, after my big weight loss, my clothes were hanging off me, and my jeans wouldn't stay up. I had to buy new clothes. Now it's happening again. My shorts and jeans have a lot of room at the waist.
Hence the mixed blessing. The nausea is bad, but it's bringing my weight down farther. I'd be thrilled if I got into the mid-170s. I'm going to give it another three weeks. If the nausea hasn't ended by then, I'll need to make changes again.
Shoulder Surgery 22 (Records)
Aug. 31st, 2022 03:34 pmUM enters every single patient interaction, and in great detail, including the doctor or therapist's personal observations. ("Patient would benefit from...." "Patient seems to be....") When I have a session of PT, everything is entered into the portal--what I did, how I responded to it, even how I walked and acted that day. At first, it startled me. It was like looking into the caregiver's mind. Then I liked it. I have an excellent record of everything, which makes me less anxious about visits.
The portal has all test results, all images, everything. They even imported my records from other, non-UM, hospitals. The procedures I underwent at Ford and at Beaumont are all there.
They're miles ahead of the Other Place, and I like it.
Shoulder Surgery 21 (Back To It)
Aug. 31st, 2022 12:17 pmI stopped going a while before we moved. I didn't have time--packing and all--and the PT didn't seem to be improving anything. My shoulder still hurt, my arm was still weak, and it was enormously stressful attending thrice-weekly sessions at the clinic that had savaged and ridiculed me. Even though these therapists weren't the perpetrators, they were still causing me physical pain, and they work for the horrifying place, so my mind lumps them in with the crimes committed against me.
After the move to Ypsilanti was done, I called around to find another shoulder specialist through U of M Medical. This was in June. The earliest appointment they had for a new patient was in September. I didn't like that at all! Living with near-constant pain was bad enough, let alone waiting over three months to address it.
I called the office back every couple days to see if they'd had any cancellations. Finally, one came up in late July. Not ideal, but better than a poke in the eye with a sharp stick, I suppose.
As the day of the appointment approached, I became more anxious. I've noted before that whenever I go to the joint doctor or the urologist anymore, I shut down. It's a defense mechanism. If I don't feel =anything=, I don't feel terror. The problem is that I don't ask good questions when I'm shut down. I've even written questions down beforehand, then failed to ask them. This complicates my medical care, and I was anxious both about becoming anxious (if that makes sense) AND about the appointment going badly because I couldn't pay good attention.
The appointment arrived, and I made my way up to the doctor's office. And there was good news. I didn't shut down. Go me! And the doctor had reviewed my MRI from a few weeks ago, and he said he didn't see evidence of re-injury or poor medical work. The pain came from two sources--an inflamed tendon and a need to open the space in my shoulder, which had been necessarily tightened during the surgery. And there was bad news. I would need a lot more physical therapy.
I almost lost it then, but held it back. I did ask why it was taking so long, and the doctor said it can take a year to fully recover. I get angry again just typing this.
There are physical therapy facilities very near our new house, and U of M Medical's facilities are a bit of a drive, but I was seeing wisdom in having all my medical records in one place, easily reviewed by all medical staff, so I decided to attend U of M Medical.
It was a good two weeks before they had an appointment for a new patient intake. The day finally arrived, and I drove up to northern Ann Arbor, where the facility is located. I was in a surprisingly good mood--I hadn't shut down at the doctor's office, so apparently the reaction came from the people and the place, not the idea of what happened there.
But when I checked in at reception--BOOM. All the energy drained out of me and I sat in a chair, staring at the floor. I had shut down again.
A PT staffer named G-- came out for me, and I went with him, barely looking up. This place is way bigger and clearly handles more than joint problems. They have more varied equipment, including a pool, and lots of staff members bustling about. G-- sat me on a padded table and took measurements of my ability to move and what the pain threshold was, then went into detail about what my PT program would be, and what we were trying to accomplish. I liked this aspect of it. The other clinic never went into this kind of detail. Still, my answers and reactions were short. It got worse when G-- projected that I would need at least three more months of PT. My blood actually chilled and I almost walked out, but that wouldn't make my shoulder better, so I didn't.
G-- took me through an initial set of exercises that emphasized stretching rather than strength. They were fairly basic, and ones I'd done before. I dutifully went through them.
At one point, I pushed myself out of shutdown mode and told G-- what I had gone through at the other place. "I was hoping this place would feel differently for me, but it doesn't," I finished. "I hate coming here. It fills me with fear and anxiety. As a result, I'm not a social patient. I don't make jokes or small talk. I come here to grind through PT and get out."
G-- was appropriately shocked and horrified by what had happened to me and said he understood my reaction. We set up a series of appointments and I left.
The next time I went, a different PT therapist came for me, a woman named D--. I wasn't expecting this. I thought G-- would be the therapist. If G-- had mentioned anything to her, D-- gave no sign of it. I really, really didn't feel like explaining it all again, so I didn't. D-- was very nice, though shut-down me ignored her as much as possible. At one point, she wanted me to lay down on my back on a table with my knees up. There I came more to life. "I can't do that," I said. "It's a trauma trigger and it makes me upset. Can we do this sitting up?"
She said that this exercise wouldn't work from a seated position. Could I try lying down a little?
I finally allowed that we could, as long as she stayed a few steps away, where I couldn't see her. I got through the exercise set. That was the last one, so I left.
Later, D-- emailed me a list of exercises to do at home. I saw this as an opportunity. I hit REPLY and wrote her a note explaining what had happened and how to handle me as a result of it. Send.
Weirdly, sending that email made me less angry/anxious about the PT office. This actually makes sense--writing is the main way I process stuff and make sense of the world. When I showed up for the next appointment, I didn't shut down nearly as much. D-- told me she'd read my email and understood. I nodded, and we went on.
It's been three weeks now. The exercises have changed from only stretching to mostly strength-building. They have me planking again, something I haven't done since the surgery. I hate planking. (Does anyone like it?) Additionally, I can't do it like I used to. Before the surgery, when I was introduced to planking, I could do a bunch of poses and hold them for 45 seconds. Now I'm doing good if I can hold 20 seconds, and I can only do one pose. One. The planking right now reminds me of how weak I've become, and I don't like that. But it's easy to do anywhere and it's efficient, so I do it.
Recently, D-- put me on an assisted pull-up machine. I'd never seen this before. It works with you climbing up to a platform facing a pull-up bar. A stack of weights sit below the platform. They counterbalance your own weight, so you can do pull-ups with a single finger if you want--the platform rises beneath you and holds you up. You can also reduce the amount of counterbalance so you're pulling up, say, a quarter of your weight, or half, or whatever. I can't do full-weight pull-ups, of course, but they're good for the shoulders, and D-- experimented with different weight settings to see where I could handle it.
I bring this up because I think we need more of these machines, especially in schools. Being able to do pull-ups is one measure of fitness. The problem is, you can't build up to pull-ups. You can either haul your entire weight up, or you can't. It's not like doing bicep curls, where you can start at 10 pounds and use heavier weights as you get stronger. But this machine lets you build up. I remember in elementary school, I couldn't do pull-ups. I wanted to do them, but couldn't figure out how to get strong enough to do them. This machine would have let me.
So I'm back to doing PT twice a week at the facility and three times a week at home. For three months.