Sick in 2020s

Just an initial update that I started yesterday but was too out of it to share. There’s more to come but I may not get to it today.

It’s been a scary and frustrating last couple of days. I was short of breath and feeling horrible because every time I fell asleep, I would wake up suffocating. Realizing that it had nothing to do with a lack of fluids or carbs, I started to suspect I had COVID. Then we both came to suspect, especially after learning that my nasal spray was a steroid and not a blocker like what I used to take, that the stupid pulmonologist was wrong to increase my dose. It only made my nose stuffier. AI said it could make my lungs tight as well, but since it wouldn’t quit and it was so bad it kept me up, we went to the Minute Clinic. They were really worried about my blood pressure at first because the top number hit 184. Then it was 178 and eventually 153.

The only funny part was that the nurse shared the same name as a rather infamous woman whose name I won’t mention. “Yep,” she said dubiously when I said the name, no doubt wishing her mother had picked any other name for her. The poor girl probably gets comments all the time.

They tested me for COVID, and I was negative. They also said my lungs and nose looked fine, although they didn’t have the tools to look far up in my nose at my septum. I haven’t had any lung congestion or cough, and the stuffiness in my nose was dry. The nurse recommended Claritin and wrote out a prescription for methylprednisolone to be taken for six days.

On the way out of CVS, we decided to grab a candy bar and soda with caffeine. It was my first candy bar in months, but I didn’t care. I needed the caffeine to keep going because we had to stop and charge the car for half an hour since the traffic was so bad it drained the battery more than we expected. We couldn’t go to the closer Minute Clinic because they didn’t have an appointment available until late in the afternoon, so we had to go all the way to Tarpon Springs and had been up for a long time.

We got home, and I took Claritin, but my lungs were still tight, and I had other symptoms as well. I lost another pound and am now down to 155, been poopy, and feeling very wound up. That’s when it hit me that I had two problems. Yes, the Nasacort was wrong for me, but when I put my symptoms together, I realized my TSH had gotten too low. The only unusual thing was that my heart wasn’t racing like crazy. But I was warm, definitely having sleep issues, lung tightness, and anxiety. I had also been snacking on peanuts and thought my weight would jump back up, but it went down instead. Trust me, I never lose weight on peanuts and candy bars.

The night before last, I only slept 5 hours and 5 minutes after being up for around 20 hours. I had the same problem last night where as soon as I’d fall asleep, I’d either suffocate or snore myself awake. After being up around 20 hours again, I put the mouth guard in, grateful that I hadn’t ditched it, and it helped keep me from snoring and made it easier to breathe. So it wasn’t $60 wasted after all. This time, I managed to sleep 5 hours and 48 minutes, and I even napped for about an hour later on.

I’m still afraid to go to bed because I fear the same thing will happen. I’m scared I’ll be up forever, and that it’s going to take me a few attempts of falling asleep and waking right back up to finally fall asleep and stay asleep. The guard is ready to be thrown back in my mouth if worse comes to worst. I’m also sleeping with a nose strip. I started to fear this climate was backfiring on me and flaring up my asthma and allergies and that we’d have to leave. It’s definitely not helping my allergies, but I’m now 99% sure the lung tightness was from the medication I’m stuck with for life. I skipped today’s dose and will probably skip tomorrow as well until the anxiety backs off some more.

I think I’m feeling a little better now, but that’s what I thought at the end of yesterday and the day before, so I’m not assuming I’m out of the woods yet. It takes several days to feel better after an overload of levothyroxine, and well, nothing’s ever brief for me.

I messaged Rhonda, and it was frustrating because, unlike Galileo, I’m limited in how many characters I can send in a message, so I had to break it up into six messages. I updated her on everything, from the pulmonologist to the ENT to my latest crisis.

This is the second crazy crisis this year. I just can’t get a break, and sometimes I really wish I could just kill myself. After a decade of suffering so much, I really believe I’m doomed to suffer for the rest of my life. I don’t think I’ll ever get a break where I don’t have any problems, feel well, and sleep well for any extended time. Hell, I can’t even go a fucking week!

I feel trapped because I can’t end it because of him. I would have ended my misery years ago if it weren’t for him. Not until he goes can I do that. So nearly two more decades of suffering.

I also asked Rhonda about the CPAP or a mouthguard. I looked it up and found that primary care providers can write prescriptions for CPAPs. Maybe a mouthguard is my best bet after all. I would need a referral for that. Hopefully, it wouldn’t take six months to get an appointment, and hopefully, they wouldn’t cancel on me.

The only thing I hate about not having Galileo is the waiting time to hear back from Rhonda. I just want to know what to do from here. Obviously, my dose has to be scaled back, but the question is how much? Should I do a mixed dose, skip when I don’t feel good, or go back to all 75s? There is such a fine line between helpful and hurtful with this fucking poison! I’m guessing Rhonda will want me to go to the lab or come in and see her. The problem is that the labs will be deceptive because I have to skip ASAP. As I’ve learned the hard way, if I don’t jump on scaling back right away, the problem only gets worse. The skip will reflect in my TSH right away, even though I won’t feel the effects for a while. So now I’m not sure if I ever really lost weight due to cutting sugar. I might have lost a few pounds, but after that, I think the medication ramped up, and losing the 10 pounds fueled the medication’s effects.

I felt so bad for Tom because he was up forever as well because I felt so shitty, but I’m forever grateful to him, of course. The poor guy kept waking up with leg cramps, so he had to get up to drink fluids each time.

There’s more to update on, but I’m running out of energy, so I’ll have to do it tomorrow. Hopefully, I can make it to 7 hours of sleep before being up for 20!