the_rck | Entries tagged with tremors

We made a pot pie yesterday. It involved a lot of me standing next to the stove and stirring things, so I think that we need to plan better. I had Cordelia working on the green beans because I didn't think my hands were up to the fussy work, but she took a very long time. I managed the carrots and potatoes and mushrooms.

We used ground turkey because I didn't want to try to work with raw chicken. I did the squash/Bisquick/shredded cheese mix for the topping. It all came out tasty.

I was extremely shaky by the time the soupy part of things was done. I had to drink some orange juice and then do the topping while I was sitting down. The OJ stopped the trembling. I was still exhausted, though, so I was extremely glad to get everything into the oven without my having dropped anything.

During that time, Scott was cleaning the dryer vent and all of the furnace filters. Replacing the filter for the humidifier needs to go on the list for once we can go out again. We shouldn't need the humidifier again for several months, so it can be put off. We just don't want to start it up again without a new filter.

We bought a fried chicken meal at Kroger yesterday. We ate at 5 p.m., and by 11, Scott was having a full blown alpha-galactose allergy reaction. His breathing wasn't affected, but he got hives and the usual digestive issues. We discussed the ER, but we weren't convinced that they could do anything beyond what we were doing (cold packs, benadryl, fluids, and immediate access to the bathroom. And, actually, that last isn't readily available in the ER, at least not in my experience). I stayed up to make sure that he didn't start having breathing problems and not notice.

We'd have had to wake Cordelia or to call a cab if Scott was going to go to the ER. I don't have a license. Cordelia's permit allows her to drive people to medical care in emergencies. It wouldn't have allowed her to drive home afterward, but she could have gotten Scott there. She'd have had to take a cab home because the buses don't run that late.

We're not sure if this is accidental contamination or a change in how they prepare their fried chicken. I don't think we'll dare risk it again. As sides, we got mashed potatoes and mac 'n' cheese, and I don't think either of those are likely to have been prepared with, say, beef broth or fat. I don't think this is Scott becoming sensitive to dairy (which can happen with alpha-galactose allergies) because he's eating cheese on his sandwiches every day.

I think I've figured out what's been going on with the rash and inflammation around my eyes. I finally googled it and discovered that beta blockers were fairly high on the list of things that cause that. I started taking propranolol daily for the essential tremor (which can be left untreated without being dangerous as long as I'm careful about what I try to do) at the beginning of September. I now haven't taken it in a week. My eyes still don't look good, but they look much, much better and hurt a lot less. Wearing an eye patch helps whichever eye I have covered.

Temperature extremes make the inflammation worse as does any sort of airborne irritant. Just passing the toiletries and home cleaning products aisles at Kroger yesterday made my eyes burn. I can't imagine what walking down either would have done to me.

The eye patch is awkward because it freaks people out and because it keeps shifting in ways I don't like. It does, however, help in several ways. I don't see as well with just one eye, but I can keep working longer without eyestrain. That applies whether I use one eye exclusively or switch off at regular intervals. Apparently I'm working harder using both eyes than I do with just one.

I regret the propranolol more for the effect it had on my anxiety than I do for its effect on my tremors.

Cordelia's choir has a concert tonight at Hill Auditorium. There will be multiple choirs performing. We have tickets for balcony seats. I'm not sure if Scott's parents will be coming. Scott's father was going to have minor surgery today, and he thought that he probably wouldn't be up to attending. I'm not convinced that Scott's mother making the hour drive alone in the dark is a great idea, either, but she may do it anyway.

I'm having problems with dizziness/vertigo this weekend. I can tell that it's a problem with my ears. If I apply pressure in the right ways, things start to drain, but I can't keep that up. An electric heating pad works better, and I seem to get about half an hour after prolonged application when I can walk around without feeling like I need to lean on the wall.

I'm having some luck with mucinex today. I'm hoping that that will be enough to make doing necessary things this week more feasible. It's not just my balance that's off. I'm muddling dates and words and forgetting things that I considered five minutes before.

I need to figure out some schedule related things for tomorrow. Scott will likely be working 7 a.m. to 7 p.m. Cordelia has a choir rehearsal that might run late enough that getting the city bus home will be difficult but by no means late enough that her father picking her up will work.

My mother will arrive at some unspecified time, possibly early enough to help, possibly not. She doesn't know that I've been sick, so I need to explain that part.

I'm not sure if I'll do Yuletide this year. I have no enthusiasm for it at the moment. I've also got two stories to edit, one to write (for my Fandom Trumps Hate auction winner), and two game scenarios to write for UCon. Right at the moment, I don't want to do any of it because I can't track things correctly. I'm worried that I'll build in contradictions/weird logic errors without noticing that I'm doing it.

For the moment, I'm listening to audiobooks and looking at how far behind I've fallen on my book logging. I don't know that I'll remember the books after or actually do anything about the logging, but... It's almost like doing something.

On the semi-plus side, the prednisone has made my hands hurt less. I'm trying to enjoy that while it lasts. The tremor has been bad, though, bad enough that texting takes three times as long as it should and that I can't use Chrome on my phone. My fingers move in ways that the interface interprets as commands.

I had PT today and walked home after. I stopped halfway and had a turkey reuben at the Northside Grill. I stopped being happy about walking when I was a bus stop and a half from where I’d have gotten off the bus anyway, so standing to wait for the bus felt silly. I could cover the ground in less than 10 minutes.

I will have more to say about PT and such tomorrow. Mainly, it’s good to talk to someone who understands the issues I have with the doctor’s suggestions and gets that fear of dropping a weight on my head isn’t— Well, she said, “Yeah, that might kill you. Don’t do that one.” She’s going to research glove weight options

I still haven't made those phone calls in spite of having good intentions. I'm going to set an alarm to remind me to call my grandmother tomorrow. I'll see if I feel up to calling my father after that.

Easter dinner with Scott's sister's family and her in-laws turned out to be pretty laid back. I didn't expect it to be. I think that part of it is that my SIL has realized that the tremor and the arthritis mean that she really doesn't want me carrying her china or helping prepare food in her kitchen. I'm an accident waiting to happen even when I'm the only one in the kitchen. The odds of trouble go up with more people crammed in there.

I wrote an exchange treat over the weekend. I didn't make progress on my actual assignments, but I wrote about 2500 words and got polished enough to post. Maybe I'll be able to get my words moving this week. I'm at 29K words for the year which is pretty good but not even remotely comparable to where I was at this point in 2017 or 2018. I'm tracking it, but I'm not particularly fussed.

I asked today at the library about that series where they ordered v.3 & v.4 the same day and I put holds on both. The guy at the desk shrugged and told me I was out of luck. He wasn't willing to do more than look at the same catalogue record I had and tell me that v.3 is still 'on order.'

I had to return season 5 of Elementary half-watched because there was a hold on it. I'll be able to get another copy soon, but it was annoying because I had expected to be able to renew it.

I spent a while today in bed with my knees aching. I'm not sure why I stayed in bed as lying down didn't help. It's an ache in the muscle right above the kneecap and going down around the sides of the kneecap. Scott asked how much salt I'd had, so I had a gatorade which, weirdly, did help.

It's supposed to be warm (for Michigan in February) and rainy tomorrow. I have an appointment on campus in the afternoon, and I'm considering going down there early so I can walk around a bit, but I'm not sure I want to do that in the rain. If nothing else, raindrops on my phone interfere with playing Ingress due to the interface reading them as touch/input. The interface reads a big drop of rain as touch more reliably than it reads my actual fingers making contact (I have problems that way across multiple phones) as touch.

I figured out a big reason I'm not very enthusiastic about watching things streaming on our TV. I loathe the remote. I mean, I knew I did, but I now know the reason that I want to stomp on it when everyone else is confused by my vitriol. It's the goddamned tremor. The remote is tiny and wants me to navigate by swiping. It will take me about ten tries to get it to stop where I want it to. Back and forth and back and forth and up and down and never stopping where I'm trying to get it to go. I think yesterday was the first time Scott had watched me trying to do it.

I had to explain to Cordelia tonight that me constantly bumping into things is not me being 'silly.' It's me having crappy proprioception. Having the bathroom door stuck partway closed (due to things behind it) and the bathroom cupboard doors open (because they don't stay closed reliably) means that I am guaranteed to bump on one side or the other because there's only just enough space for me to pass through.

I tried the propranolol again today because I knew we'd be having lunch out. As far as I can tell, it made no difference in terms of my tremor. At least, if this was a decrease, I'd hate to see how bad it would be without the medication, but it was at about the level I'd expect it to be unmedicated.

I did finally connect wanting to plant my elbow firmly on the table with that support decreasing the tremor because it limits the tremor to my hand and wrist. Leaning forward to minimize the distance between my mouth and my bowl/plate helps, too.

It was 11F yesterday when I went out for my appointment. I discovered that I don't have gloves that will fit over my thumb splints. Fortunately, my coat pockets are warm enough to protect my hands. It just makes carrying my purse harder because it ends up hanging off my wrist. I have no idea why down coats don't have some sort of shoulder patch that will provide some sort of friction to hold a strap.

I played some Ingress in spite of the cold. That took me from gold Trekker to platinum. I'll likely get onyx eventually, but that's another 1500 kilometers, so it won't happen soon. I still need two more gold badges, and I expect I'll be months about that. Even if I was able to go out every day for as long as I did yesterday, it would take months.

I need to figure out better insulation for my boots. They're basically waterproof hiking boots. I bought them for the traction and the ankle support because I was afraid of falling while walking Cordelia to and from school. They're still excellent at that, but my feet get pretty cold in them.

I wore two pairs of socks yesterday, but I don't own any heavy socks because I haven't been able to find anything without animal fiber that doesn't require more hand strength than I have. I used to have cotton rag socks, but they killed my hands, even 15 years ago. I can't tolerate animal fibers or bamboo.

Animal fibers, every kind I've tried, make me itch and itch and scratch until I bleed. Bamboo, oddly, makes me sneeze. I love the feel of bamboo, but when I tried crocheting with it, I had a full on respiratory allergy response, including runny nose and watering eyes.

I have not looked at my reading list at all today, and I rather expect that I won't go all the way back to where I left off reading yesterday. Since I lurk rather than commenting most of the time, that will likely only be noticeable by me, but I'm mentioning it in case there's something I really ought to have responded to and just didn't see.

I took propranolol every day this week, and I think it's a bad choice for me as a thing to take every day for something like essential tremors. It's mildly beneficial for the tremors most of the time and sometimes (maybe?) decreases my physical pain, but when I hit something that I find stressful, it wrecks me mentally. Apparently, controlling my physical tension just means that my anxiety disrupts my brain instead.

I'd rather have a constant mild headache than be so precarious that Scott answering a question that I asked him specifically because I thought there was a problem with my story leaves me mentally paralyzed for 12 hours. I have an exchange fic due tomorrow, but I spent most of yesterday reading a long Harry Potter fic because I was freaking out.

( Cut for discussion of food and IBS )

I can tell the end of this story exists somewhere in the foggy distance. It's likely closer than I currently think, but I'm not sure what it's going to look like. I haven't figured out what decisions the characters will make. Scott actually suggested something that's mushier than I'm likely to go for.

Last night was one of the worst nights in terms of sleep in the last month or so. I haven't been up for two hours yet, and I'm already dragging horribly. I had a good breakfast and my usual amount of caffeine, so it's not lack of any of that.

Once Scott and Cordelia leave, I need to deal with all of the preparation for the cleaning lady's arrival. I'll be out during the time when I normally would deal with it, and I'm afraid that, if I delay at all, I'll just sit here and stare at my laptop.

I have realized that I don't like doing chores, including opening cans, when Scott and Cordelia are around because I knock things over and drop things a lot. Then I swear about it. I'm misjudging distances and balance points and where exactly parts of my body are going. I can manage the bits I'm really focused on, but I bump into things on the periphery.

Scott's mother is possibly looking at another surgery. They're going to do another mammogram because they're pretty sure they missed things. I have no idea why not an MRI because those, while more expensive, tend to show more things more accurately. They already know that the first mammogram gave very incomplete information.

I still haven't gotten myself moving on anything at all beyond the basic necessities of day to day life. I also still haven't found that fitted sheet. I want to change the sheets today or tomorrow, so not finding it means having to wash this one before I can remake the bed. This is not ideal as I spend a good bit of Thursday afternoons sitting on our bed so that I'm not in the way of the cleaning lady. I don't have time to deal with the sheets completely before she arrives, not if I need to wash them in the middle.

My sister called last night and did her usual rundown of health related things that are going terribly wrong. There are a number of those that I've been dealing with for years. It turns out that she and our mother have the same physical problems I do in terms of actual damaged joints and tendency toward injury, but they're worse off because they don't feel those injuries as painful and so go on without getting treatment. My problem is that everything is overwhelmingly painful, even the stuff that isn't out and out damage. Which makes getting treatment difficult from the other direction, but at least I know when things are wrong.

My sister says that our father is having tremor issues and is worried that he has Parkinson's but refuses to go to the doctor. I'm going to call him after my phone recharges and ask him a couple of questions because he may well have the same tremor problem I do as it's often hereditary. If he might have that, maybe he'll be willing to go to the doctor about it. Essential tremors are inconvenient and limiting but not anywhere in the same ballpark of serious trouble as Parkinson's.

I'm really, really exhausted. I slept badly Sunday into Monday. I tried going to bed early last night but then woke six hours later when the Halcion wore off. I sort of slept after that, but it was the kind of sleep in which I was semi-aware and feeling frustrated about not being fully asleep.

I'm hoping to finish a draft of my Yuletide story this week, but it's going to depend on me actually getting some sleep. I feel right now like I could sleep, but Cordelia will be home in about 45 minutes. I may try napping after that. I don't know.

I stayed in bed this morning when Scott and Cordelia got up. I didn't manage more sleep, but my sinuses were hurting enough that I wasn't sure I trusted myself to get up.

I'm having problems today with dropping things and misjudging distances. I think it's the essential tremor acting up because I'm tired. I managed to splash coffee over a good portion of the bathroom even though my mug was only about a quarter full at the time. Right now, I feel like standing up would be unwise. I'm hoping that will pass soon because I would like to be able to do my usual Thursday chores.

I've washed two loads of laundry. One is currently in the dryer. The other will stay wet until someone else can go down to switch things over (probably the cleaning lady who comes at 2 p.m.). I think that laundry today was a mistake. I had fewer physical resources than I thought. The back breaking straw was my efforts to empty the dishwasher so that I could load it again before the cleaning lady comes.

I'm thinking about ordering delivery of some sort for lunch, but that seems like a lot of effort. Maybe a nap instead?

It looks like it's snowing outside, but it sounds like rain, so I suspect ice pellets rather than snowflakes. I'm not planning to go outside today, so I won't check my guess.

Scott's sister's in-laws have invited us and Scott's parents for Thanksgiving dinner. Scott's mother is scheduled for surgery the day before, so we knew Scott's parents weren't going to host. Scott's sister's kitchen is still not ready for serving a meal for a large number of guests, so she couldn't host. Our house is too small to accommodate everyone comfortably.

I had been assuming we'd stay home and have our own, small celebration. I liked that idea because it would give me more control over what was in the food and when we ate. It would also mean not having to deal with all of those people. I don't mind a gathering that large when they're people I have some commonalities with, but family is harder on that count.

Scott will be off work next week, Wednesday through Sunday. The Wednesday is entirely for his mother's surgery, so that he can be there. I will likely go with him. I need to talk to him and to Cordelia. I don't think she'll want to go, but she should have the option and the sense that this is a thing people do for each other. If she stays home, I may, too. It's not likely to be a long surgery, at least. The main worry/risk factor is Scott's mother's age.

We've had three knock on the door canvassers in the last two days. I have no idea how many we'll get today. They're all after Scott because they know I voted already. The guy late yesterday was from the AFL-CIO and seemed to think we were a union household which... Neither of us have ever belonged to a union. We both think they're a Good Idea. We've just never had jobs that were unionized.

(Scott's employer has straight up stated that any plants that unionize will close. For unrelated reasons, of course, because that sort of threat is illegal. My previous job in the university library system wasn't unionized because the organizers who had come in in the 80s managed to offend most of the employees by (a) referring to the female employees as 'girls' and (b) using informational handouts aimed at an audience that couldn't read very well.)

At any rate, I had voted for all of the candidates they endorsed. Endorsements like that are more likely to be a consideration for me in a primary because I've never seen the AFL-CIO endorse a Republican candidate around here (does it ever happen?). I intend to take a little time today to write up some notes for Scott about the non-partisan races. Most of those aren't actually contested, but some are.

I have taken a dose of propranolol (20 mg) this morning. It's not a medication I've tried before. It's intended to help with the tremors, but there's a chance that it will give me asthma problems. It's the first choice of medication for essential tremors for people who don't have asthma. Primidone, the medication that gave me asthma issues, is the first line for people who have asthma. I'm trying it today because Cordelia is home in case I have problems.

It's been an hour, and I think I'm doing okay.

I think I need to make a schedule for today, tomorrow, and Thursday. I probably won't stick to it, but having it will force me to pay attention to time passing. Yesterday, I spent all day writing something that has nothing to do with UCon or Yuletide or anything else with a deadline. 4K words, but... I can't afford to do it again.

I feel really wiped out today. I've got a lot of chores that need doing, but maybe I'll be able to rest anyway.

I got the new shingles vaccine yesterday, my first dose, and I appear to be in the lucky 25% that gets chills, so I'm in bed and wrapped in blankets. I didn't sleep well last night because begin cold woke me an hour before my alarm. At that point, I seriously considered just getting up for the day because getting up to search for a blanket would wake Scott and not leave me with enough time to warm up, but getting up for the day would also have woken Scott, so I stayed and shivered.

I also started a new medication last night, but chills aren't listed anywhere as an expected side effect, so I'm going with the vaccine as the likely culprit. The medication has a list of seek-help-immediately things that basically looks like stuff that I just expect to happen most days and to get worse and better more or less randomly. I'm going to drop a message to my doctor about that because, if I went by those directions, I'd be in the ER about twice a day for as long as I stay on the medication. I'm pretty sure she'll say just to watch for 'unusual' levels of pain and fatigue and such, but I don't have neon line that say 'up to here is normal.'

I have a referral to the UMHS medical genetics department about the Ehler-Danlos. I don't expect that they'll be able to get me in for months given that nothing particularly terrible is likely to happen from me waiting.

I also have a PT referral for my neck, right shoulder, and left elbow. My doctor would like me to go to the Burlington Building for it, but that's out by Briarwood. That means using the A-Ride or the bus or begging for transportation. I'm going to see what's available at the hospital and at the non-UMHS practice that Scott goes to.

The latter is less appealing now than it was because Scott's new work hours mean me having to get there on my own most of the time. It's about three times as far from here as the stop for the bus that goes there is. I'd ride the bus for one stop and then have to walk the rest. I need to check the exact location of the bus stop relative to the crosswalk (it's a very busy street. I can't safely cross without a light). That might add enough walking that I might as well not deal with the bus at all.

My doctor offered to refer me to a neurologist for the tremor, but I thought that I couldn't handle that just now. I'm pretty sure it would mean going either to Domino Farms or to one of the offices by Briarwood, and the PT is quite frankly more urgent for me. Then again, it's likely to take months to get in to see someone. I've had tremor issues for about 45 years; it's just that they're worse now. They're pretty clearly (from my point of view) related to anxiety, fatigue, and low blood sugar levels, and I can sometimes decrease the hand/arm tremor by bouncing one leg up and down (Cordelia is more freaked out by me bouncing one leg while sitting on the couch than by my hands/arms shaking). That seems to be mostly when it's an anxiety thing.

My fingers don't tremble except in reaction to movement from my wrist and elbow. I can type just fine as long as I've got support for my palm/wrist. Writing by hand needs support for my hand, wrist, and forearm, but that's not new. I hold writing utensils as close to the writing bit as I can get because higher up means more tremors. Because of this, I very strongly prefer to get the slenderest pens and pencils that I can (this also applied to crochet hooks and knitting needles when I was still able to use those).

ETA: And now, three hours after I wrote the above, I've got a slight fever (101.2F), and everything aches. I've called my doctor. I'm still betting that it's the vaccine because the panic! now! bits of the medication information for the new med look like things that would take more than one dose.

I don't feel anything like as terrible as I did with the cellulitis, and I've checked my breast for that. It's not a recurrence of that, at least.

I've just spent a couple of hours sorting through papers and shredding about half of them. Every time I have doctor's appointment in the UMHS, they print a 4-8 page document that lists all my future appointments, all of my current medications, and whatever instructions and diagnoses I've acquired from the appointment. I don't have much use for them long term but would rather not recycle them unshredded, so they pile up for months/years.

I'm searching for a couple of receipts that I need to send to Aetna for reimbursement. At this point, I need to check the mostly inaccessible bottom shelf of the bookshelf where I keep receipts that need to be submitted. The shelves don't quite meet the back of the case, so single sheets of paper can slip through. The one I'm searching for is, of course, the one for the biggest expenditure. I have to find it today, but I think I'll take time to fill out the forms for the other four receipts now.

Lunch yesterday was difficult because my body was being very uncooperative. My hands were shaking to the point that I couldn't pass dishes or pour water. It's a forearm tremor that makes the hands move at the wrist. I've had issues with it for years when either very, very anxious or very, very exhausted. I took an Ativan when I noticed that it was happening. Well, a bit after. It took forever to get water, and I can't dry swallow. The Ativan didn't help the tremor much.

Scott's sister was adamant that we should order a group meal. She got kind of upset when Scott and I refused. She was sure that the food would be safe. Given how it was served, Scott and I could have eaten the hummus, the baba ghanooj, the bread, and the rice. Scott could have eaten the tabbouleh and the fatoush salad, as well, but I couldn't. Nothing on the large meat platter was safe for either of us.

I ended up getting a cup of lentil soup and a sandwich. Scott got a chicken saute that the manager said would be safe for his allergies. Anything grilled would have been risky because they grill everything on that same grill and use the same utensils. My main concern was not having any idea what herbs and spices would be on the meat.

The lentil soup was a bit of a gamble. I was hopeful that I was early enough in the day that anything unfortunate in terms of pepper or oregano wouldn't make me lose sleep. I ended up with too much raw garlic from the sandwich, even though I only ate half of it. I was still having minor problems from that nine hours later, so I had some vanilla ice cream right before bed, and that let me lie down.

On the plus side, I wasn't in much pain yesterday. Apparently, there's a level of exhaustion at which my body can't keep the muscles contracting. Sadly, at that point, I start having trouble moving without dropping, spilling, tripping, turning my ankle, wobbling, etc. I can still type when I'm like that, though, so there's that.

I took the last dose of antibiotics last night, so that part's done. I have two appointments next week that aren't related to the cellulitis, one Monday and one Wednesday. Tuesday is an election with a school millage on the ballot. I'm trying to decide whether to take the bus to the polling place or to wait for Scott to get home and go with him. I'd be surprised if there are more than three people voting at any given moment, so waiting in line really isn't an issue.

I'm feeling really wobbly and exhausted right now.

I've had my tea. Breakfast was 2/3 of a can of beans. Lunch was from Wendy's and helped a lot more than it should. I'm still in bed now because sitting upright isn't such a great thing right now.

I managed to drain the beans and partially rinse them, but I probably shouldn't have tried because I only just made it back to sit down. I'm not sure why I'm so bad today. Maybe because I had to do so much Tuesday through Thursday? Maybe it's the being done with the antibiotics part? I'm more tired than I was yesterday in spite of getting more sleep.

We went out for McDonald's milkshakes last night after I'd taken my last antibiotic dose. Scott wanted to take a walk after that, but I couldn't go very far. We went about three quarters of a block and back. That was long enough for all three of us to finish our shakes. I forget, every time I get one, that I need to ask them to omit the whipped cream.

I made it out to the bank to transfer money. I had to be the one to do it because my name is on the account where Social Security puts the money for Cordelia. The bank will only let one adult be on a MUTMA account, so Scott can only be on there if we jump through some hoops to make the change and take me off the account.

I would have liked to go with Scott to do the grocery shopping, but I didn't think I'd last five minutes. I got major hand tremors just going from the car and into the bank.

Scott and Cordelia returned her rented viola and got the new one checked over (we knew that one peg needed repair) and bought a bow for the new one. We apparently have a $700 credit toward buying a new instrument from them if we do it in the next 30 days. I can't imagine we'll use it because we have a viola and have no use for a violin, cello, or bass.

I had intended to go to Shar Instruments with them, but Scott vetoed that after seeing me deal with the bank. I think that I made the right call by not attempting to do the fasting blood draw today. I just need to have it done before I see my doctor again on the 21st, so I've got two Saturdays left for it and can actually count on Scott being home to take me out to East Ann Arbor for it.

I have two manga volumes I want to finish and return to the library tomorrow. They're not due yet, but a manga volume takes so very little time that I feel like I ought to be able to get them done. I also have one DVD that's due tomorrow and that I'm not even halfway through.