Recovering in 2020s

Lying in bed, I’m starting this entry on my phone. I may or may not get it posted today, but I’ll work on talk-typing it little by little. I have a lot of writing to catch up on!

No more methylprednisolone. I’m not sure if that or the Claritin is helping my nose, but the methylprednisolone has definitely fueled my insomnia. Last night, I was up for 21.5 hours and only slept for 5. Thyroid storms also cause insomnia so it was doubling the insomnia. I’m still exhausted, but I can’t get back to sleep. At least I woke up on my own this time and not from suffocating, feeling hot, or snoring.

My nasal tissues may not have fully healed yet from the Nasacort, but I have a feeling that as long as I’m in this state, I’ll always need to sleep with either a nasal dilator or a breathing strip.

If I hadn’t been super hungry last night—likely due to the methylprednisolone—I would’ve skipped hitting 154 lbs and woken up at 153, but because I ate more than usual, I’m still at 155 lbs. It’s definitely the Levo that dropped my weight so fast. I think the first two pounds may have been from cutting sugar, but the rest was the Levo. I’ve been consuming way too many calories to lose weight like I used to when I could do it the healthy way and could only lose 2-3 pounds a month.

Late last night, I noticed my lungs finally relaxing and I could feel my metabolism slowing down. I wasn’t as warm, jittery, or tense. I still feel a little on edge because Rhonda won’t help me, leaving me to figure out the best way to manage this fucking poison on my own that I’m destined to struggle with for the rest of my life. I don’t know whether I should automatically skip once a week or trim the pills by 15%, dropping the dose to 75. With a 10 lb loss, I’ve learned I can’t stay on the same dose. I’d like to keep my weight down, but I’d gladly go back to being hypo and fat before becoming thyrotoxic again! It’s a horrible, horrible feeling—worse than the norovirus!

I can’t wait for this year to end! Four is such an unlucky number. This has been the worst year since we moved here. It’s also my second crisis this year. I started to suspect something was wrong when my moods started dipping and my weight began coming off too easily. Then I had trouble falling asleep. The only difference this time is that my heart rate didn’t spike like crazy, and I’ve never had such tightness for so long. That’s a known side effect of having too much Levo, though. I only remember the tightness being really bad the first time I had a problem on the shit. I’m just glad I didn’t have to deal with a heart rate of 120 or higher while I was going through everything else and even more glad he’s not working.

It’s definitely been a rough few days, and I feel so fucking cursed. Just so, so fucking cursed. I truly believe without a doubt that I’m never going to be healthy again—not like I was before my 50s. Tom says not to give up hope because things can change. He told me he feels way better now than he did 5 years ago, which is interesting since he’s pretty sedentary. But he was working 10-hour shifts at a job he hated. I’d feel a lot younger too if I retired from that. But trust me, I’m destined to suffer for the rest of my life. I just have to enjoy the few good days I get until I’m fed up enough to end it all. I’ve only lived this long for him.

Sometimes I wish we could have our own private suite in a hospital with every kind of doctor imaginable. Anytime I felt symptoms, they’d be there, and they’d be the same doctors who got to know me well.

I get that Rhonda did the right thing by telling me to go to the lab and to an endocrinologist, but I couldn’t get to the lab before skipping a dose I desperately needed to skip to avoid getting worse, and I can’t just “go to an endo.” It takes months to get in. Plus, I’ve seen three, and not one of them has been very helpful in the end.

I have never regretted giving up Galileo as much as I do now! They would’ve gotten me into the lab immediately and let me lower my dose when I asked to. The fact that Rhonda won’t trust that I know my own damn body and have been through this before is frustrating and not at all helpful. All this for being less than a point over where I should be! She, like too many other doctors, is too obsessed with numbers. I get that she’s doing her job, but sometimes you really do have to consider the individual patient and trust what they tell you. You may have the training, but you don’t live in their body and know it as well as they do.

So we’ve decided that at the end of the year, we’re going to hopefully sign me up with an insurance plan that either includes Galileo, or I’ll purchase Galileo on my own and get a plan they’ll work with. Galileo isn’t compatible with Aetna CVS. I will miss the Minute Clinic, but Galileo is much more helpful and convenient. They weren’t perfect, but they were still way better overall. I get that I’ll still have to bring my crotch to the GYN if necessary, my eyes to the glaucoma doctor, and my boobies for mammograms, but in-person primary care is just not for me.

This is a medication I’m going to have to be extra careful with and likely struggle with for the rest of my life. No point in going to an endocrinologist who’s either going to deny what’s going on or suggest crazy, unnecessary things. There’s no getting around the problem—hormone replacement therapy is what it is. I still need a synthetic thyroid, and because my body can’t adjust its own levels with my weight fluctuations and other things, and because I’m so sensitive to it, there’s no way around that.

Either way, Galileo had so many positives. Virtual primary care means fewer appointments, even if I have to go to the lab more often. If we ever move, I won’t have to worry about having enough meds till I get settled. Not that I think I’m ever going to be healthy enough to handle a lousy two- or three-day vacation, let alone a move, even though we’ve been talking about getting an RV and heading back out west near Becky. Tom said it’s too bad we didn’t know earlier about the Pacific Islands that are US territories. That could have been an option, but we always learn things too late in life. Rolls eyes.

This shit I’ve gone through for the last 4-5 days was worse than the norovirus I had earlier in the year. I wasn’t nearly as wound up then, and I had a better sense of what was going on. This time, I felt scared and hopeless, even though the logical side of me knew it would eventually pass, like most things do. But that still doesn’t mean I’m ever going to be healthier, happier, or have my old energy back.

That’s another thing… I still have sleep apnea to deal with, and I’m not sure how. I’m still afraid to try the Inspire, as appealing as it sounds, and I can’t get into an ENT here anyway. So, I guess that leaves me possibly finding a way to get a mouthguard made or seeing the pulmonologist to give the CPAP another try. Worst-case scenario, we could buy a refurbished one with the headgear for roughly $500.

Tom donated on Tuesday, and I was definitely anxious while he was gone. But thanks to Stacey, I didn’t panic. I tried to distract myself with VR meditation, coloring, and even chatting with Mia. Yes, I mostly see them as fashion games, but sometimes chatting with Mia or Amanda when things get rough can be a little therapeutic, even if you know they’re just bots. Even ChatGPT can be comforting—it sure is educational, that’s for sure. Things would have been so much worse over the last decade without Google and now AI to research symptoms and whatnot.

He ordered four free COVID tests from the government, which should arrive soon, but I don’t think we’ll need them since I was just tested. Kathy said she had it twice and it was horrible. It seems Tom and I are the only ones who haven’t had it. I hope it stays that way! Things are so much harder to handle the older I get, emotionally too. Back in the ’90s and earlier, when I caught colds, I knew it was just a cold, accepted it, and it didn’t affect me emotionally. Now, I worry—what if it’s not really a cold? What if it’s something else? And then my mind goes crazy thinking about what it could be.

Ah, it’s so therapeutic to pour my thoughts out! I’m still considering another therapist, even if it would be virtual.

I’m not sure if I’ve mentioned it, but I created a Google Doc to log everything I feel physically and emotionally each day, how I slept, and what medications I took, whether they were prescription or over-the-counter. I won’t mention the Levo unless I skip it. I still don’t have the energy to catch up on the cleaning I’ve been wanting and needing to do, and I haven’t even been on the road. My poor VR ride is going to take much longer. I’m still in the middle of the Russian forest.

Thanks to Kathy, I’ve learned how to broil sirloin steaks, even though the steaks come out tough no matter what I do because, well, that’s just a cheap cut of steak for you. I never broiled steaks before. I tried one in the slow cooker too.

The honker’s return is near because the handyman is edging his place and trimming his tree. Kind of rude, too, considering he started before 8:00. I have a feeling the honker’s going to come down even earlier this year and probably leave even later. Each year, he seems to extend his stay. He’s probably eager to get back to his fuck buddy. For the last couple of days, that dark truck with the New York plates has been parked there.

I had this dream where I was talking to Judy, Andy’s mother. We were discussing why we prefer to sleep alone and hate sharing our beds. Then I said something as a joke, but she took it the wrong way. I glanced away for a second, and when I looked back, she wasn’t there. I started walking down a long hallway looking for her. When I called out, I heard her speaking softly from somewhere down the hall. I checked each room as I moved down the hall until I found her folding laundry in one of the rooms. I apologized, saying I was sorry if the joke came out wrong and offended her. She responded by saying she hoped Andy had pissed me off and asked if I knew I made their [female name] vicious. I guess she was referring to a grandchild of hers, and that I supposedly watched a movie around them when they were a baby, which somehow made them grow up angry. I told her Andy already pissed me off and that I had no idea what movie she was talking about.

Then, I had another dream where I was living with my parents again. I woke up in the morning in what seemed like a fairly large and sunny bedroom. I went to weigh myself, but the scale, along with something else, was broken. I stepped out into the kitchen to find both my parents already up, and I mentioned the broken things. I opened the refrigerator and saw my mom had bought a chicken. I said that a nice family meal would be great, and it was too bad we didn’t have lettuce and tomatoes so I could make us a salad to go with it. I followed her out of the kitchen and down a little hallway, where a door was slightly open to the outside. She said a monster mouse got into the house last night and that it was out there. I thought it was weird that she left the door open in that case, but I went outside and walked down a little path alongside the house. I saw a black mouse lying on the ground. A few ants were crawling on it, and it was struggling to get away but was too injured. I went back inside, saying I was going to get something to put it out of its misery.