Pulmonologist Appointment in 2020s

My pulmonologist appointment went as expected—not great, but I still hold on to a shred of hope I can eventually get some of my energy back. The company that supplies my CPAP determines whether I can do an at-home study or need to go to a lab. They called this company, and because I was non-compliant the first time, they want me to go to a sleep lab instead. Not thrilled about this, but I’ll do whatever I have to do. The lab will call to schedule my appointment sometime in the next month, so I might not have the CPAP until June or July.

I was frustrated with Tom after we left the office. He expressed doubts about seeing this pulmonologist (after saying it was good to see one who had my records) because of the way he doesn’t believe a sighted person can have non-24 despite two doctors diagnosing me with it. An online search confirms that, although rare, it is still possible despite the doctor swearing he’s never heard of a sighted person having it. He believes that with restrictive sleep therapy, I can “reboot” my circadian rhythm in a few weeks. However, Tom and I are both skeptical because I’ve tried this numerous times before. If I could simply pick a time to sleep and wake up, I would have done so years ago. My internal clock doesn’t operate on a 24-hour cycle like most people’s; it’s more than 25 hours. Plus, as Tom pointed out, I’ve had this problem for decades yet I didn’t always have this fatigue.

As I reminded Tom, the most important thing is dealing with the fatigue. I won’t know if the CPAP will help until I get it back, use it consistently, and allow a few months to pass. If I’m still fatigued then I might explore other possibilities, but honestly, I’m just sick of this. I’m tired of the endless health issues and feel like throwing in the towel and offing myself yet Tom holds me back from doing that. Sooner or later, I need to put myself first. I can’t keep suffering for him. His asking me to stay alive is only prolonging my suffering and I’m only willing to do that for so much longer.

If the CPAP doesn’t help, I’ll suspect CF long before anything else. I also worry about the costs before this is (hopefully) resolved or before I reach my breaking point.

On top of everything, I’m concerned about my lungs. The doctor mentioned he never had asthma despite living in various places around the US, Caribbean, and the UK but he started having problems three years after moving to the Gulf. It seems it can take that long for issues to develop after all. He said something about how the calmer waters in the Gulf compared to the Atlantic side are a factor and the heavy air, etc. In other words, we chose the cheaper side but also the unhealthier one and I see no way to save enough to get out of here. We can’t get ahead if I’m always having health issues. I may need to switch to a different asthma medication and go back to struggling with that regularly.

I’m just so fed up. Tom worries that because the doctor doesn’t believe me, it will make things harder, but I don’t care if he thinks a sighted person can’t have non-24 or not. I just want to go to the sleep lab and get the CPAP back to see if it helps.

The doctor noted that the last time I was borderline, taking around 7,000 breaths with only 146 of those counting as snoring, and my oxygen only dropping once. We both agreed, however, that home testing can often underestimate the severity of sleep apnea. I suspect mine has worsened and is now moderate, but I won’t know until I undergo testing. Fortunately, I can take clonazepam beforehand if I want. The doctor also said that if I have trouble falling asleep and can’t get enough testing hours, we might need to split it into two tests. We’ll have to coordinate it with my schedule.

My worst fear is that I’ll get the CPAP, adapt to it, and still feel fatigued most days only to find out I have CF. In that case, I would definitely leave this earth. I’m trying not to think that way and to remain optimistic, even though it’s hard. Most days, I have no energy, and now my lungs are being trashed by this climate which doesn’t help my mood at all.

Someone in a huge truck with a kayak on top of it spent the night at the Honker’s, and his daughter is still there too.

He’s a total weirdo. It was thundering, lightning and raining yesterday and he was hosing his truck down. I was like, wtf? Who the hell does that during the thunderstorm?