6/1/25
I watch a lot of Lifetime movies, and it was cool to see one filmed in the St. Pete area just a stone’s throw away. I recognized the area, and on a form in the movie, it said Pinellas County and that really is Pinellas County.
It’s also cool to see how Duolingo keeps track of how many days I review my languages. It has a unique-looking icon on my phone with the number of days on it.
I taped my mouth as snugly as I could without being uncomfortable. But sure enough, just as I was dropping off to sleep, air was leaking. My first thought was, fuck the CPAP. I’m not going to sleep with anything if both masks are just going to leak. I’ve got a serious curse on my sleep and there’s just no getting rid of it. I’m going to have to accept I’m going to spend the rest of my life on the tired side.
But realizing that not sleeping with anything was bordering on dangerous, I decided to get the damned chin strap out after all. Although uncomfortable, it wasn’t as uncomfortable as the hybrid. I think I remember something like two instances of air trying to escape. My sleep was mildly fraggy, but I never had to get up and pee. I ended up getting my lowest AHI score yet at an incredible 0.5 events!
I definitely feel better today. The next question is whether or not to carry on with this routine or jump to trying the hybrid again. Just because it worked out well last night doesn’t mean it’s going to keep working out. I didn’t realize it would be so damn hard to get a good seal with these things! I’m at the point now where I can sleep with them just fine. It’s the fucking leaks that’s the issue. I guess I’ll see how many decent sleeps in a row I can get with the chin strap before I resort to the medieval torture device called a hybrid.
Been loading up on salmon and eggs and foods that help enhance and optimize thyroid function in preparation for going to the lab on the 3rd. Sure hope my TSH is under 10! Hopefully, my cholesterol isn’t too out of control and my A1C hasn’t risen, but I’m not treating either one—especially the cholesterol. As sensitive as I am to medication, if I don’t feel the symptoms, I don’t treat it. I don’t expect any of my other numbers to be bad. I think the best I can hope for is that I’m still prediabetic, my TSH is under 10 but not normal, and my cholesterol is through the roof as usual.
My new underwear is soft, silky, and comfortable—but too big for me. So much for thinking I had an extra large ass!
I think I’m going to have to start wearing panty-liners. Not to bed, but while I’m awake. I sit on the toilet and wait as patiently as I can for my bladder to fully empty out, but I still leak. Ugh, air leaks, piss leaks, etc.
Played around with Character.ai for a bit, and while it’s cool that you can put your characters on a group chat, it gets boring quickly.
For a fleeting moment, I almost wished I could update Tammy on how my health has been over the last half a decade and settle my own curiosity about her living situation. I couldn’t care less about her moody, narcissistic brats. That was the one area she was very empathetic and understanding with because she too has suffered a host of health issues. But after learning much too late in life, the toxic drama that would eventually come with it is totally not worth it. Better to judge people on how they treat you and not whether or not you’re related. Biology should never be a ticket to abuse someone. She has memory issues from hell, lies too much, would want to do nothing but talk about God and her brood when it wasn’t health stuff, have long phone chats that just aren’t my thing, and then as soon as she got pissed at me for whatever, on come the threats and harassment—with the help of her own kids that she has join her in the immature bullying campaign. Sure, I now have a phone that can block numbers, but that doesn’t mean one can’t download apps to make it look like they’re calling from different numbers that I have to keep blocking as I already do with spammers and scammers.
6/2/2025
Right back to the fatigue I go. It’s not like I’m surprised, though. I didn’t have any leaks, but I sure had a lot of “frags.” Woke up at least a half a dozen times, once to pee. If I don’t figure out a way to defragment my sleep, then I’m not gonna be much better off than I was before the CPAP. The only thing the CPAP will do is keep me from being so breathless.
I read that phone filters don’t filter out blue light entirely. So I’m thinking of getting blue light-blocking glasses that do a better job and that you can wear over your prescription glasses.
I didn’t take anything at all before bed. Next time around, I’ll take half a clonazepam and definitely magnesium. I researched numerous sources and they all say that melatonin, magnesium, valerian root, and chamomile are the best natural supplements to help with fragmented sleep. Melatonin has its drawbacks, though. That will usually help knock me out, but that can actually disrupt my sleep and cause nightmares along with next-day grogginess.
I can’t take clonazepam all the time, so if none of these things help, then I don’t know what to do but be forced to accept the fact that, just as I fear, I’m going to spend most of my life tired. It’s great that I got my AHI down, but dealing with fragmented sleep is tricky because it’s so much more complex.
6/3/2025
I had hoped to sleep till around 3:00, but I woke up at 1:00. I’m very hungry now, but I’m going to have to live with it for another 6 hours or so because my lab appointment isn’t until 8:00. I would have scheduled the first appointment they had at around 5:30, but it’s not safe for Tom to drive in the dark until he has his cataracts removed. Next week we should learn more about that. I think it’s next week, anyway. If not, then it’s definitely the week after.
Anyway, I had zero leaks and two frags. I crashed at 5:00 and woke up to pee at 8:00. Then I had trouble falling back asleep, so I took half a clonazepam. I did take magnesium before bed, and I also had a cup of chamomile tea toward the end of my day. I slept soundly until 11:00 when I woke up for a second, and then didn’t get up until 1:00.
AHI score was up a bit but still under 5. Sometimes I feel like I don’t have the mask inserted in my nostrils properly, but it always says I have a good mask seal, and I don’t usually lose more than 5L of air. The pressure has been a little higher than I’ve seen it though, at 11.5. So the chin strap is continuing to do a good job of preventing leaks, as long as I’m not on my back which is my least favorite position anyway.
Fragments still remain a problem though. A little research said they should lessen over the next couple of months. It said that being tired a month into CPAP treatment is common and that I should be a little surprised if I’m not better in early July. If I’m still tired in early August, that’s my red flag.
I really have a bad feeling about this. I really do. I fear more than ever that I do indeed have chronic fatigue. If I don’t, then it’s likely connected to the frags. The question is how to stop them if they don’t on their own. It said, though, that my brain and body are still adjusting to treatment and reminded me that I had years of sleep debt.
I really hope I’m just being unrealistically pessimistic, but unfortunately, I have a knack for sensing these things. I’m psychic, I’m intuitive, and it’s my own body we’re talking about here. I’m not trying to guess or get a sense of someone else.
It still feels like one big curse on me. Something has been determined to use my mind and body against me for the last 11 years, and it’s like it just doesn’t want me to have any energy. Sure, I would be limited as to what I could do due to money, but I could still do a lot more if I had the energy. Maybe I’ll be miraculously and marvelously surprised by being wrong and I’ll gradually get more and more energy. I would settle for 20 good days a month if I couldn’t be good every day — and hey, no one’s good every day, right? So yeah, I would settle for 20 good days, with the rest being moderate, and one, maybe two days of heavy fatigue.
We went out to Publix yesterday so I could pick up my prescription and get a couple of post-lab treats. The plan was to indulge in some chocolate chip cookies, a caramel candy bar, and then coffee ice cream the next time we do a Walmart order, and then I will jump back on my sugar-free plan. I’m also going to slowly morph into a healthier and better-balanced diet with fewer calories, little by little.
So far, though, while I haven’t noticed a huge difference in energy levels, my blood pressure is definitely better. I didn’t realize just how much sleep apnea affected that.
Okay, it’s almost 3:00 a.m. now, and I’ve been in bed ever since getting up at 1:00. Time to get up and get moving. I gotta shower, brush my teeth, get dressed, and start guzzling lots of water so it will help with the hunger and the vampire being able to find a vein easily enough.
I’m sure the rat is eager to see me too. I can just picture her bouncing up and down at her door, LOL.
6/4/2025
Yesterday was a great day. Started off a little tired, but a quick nap refreshed me. Last night, however, I had leaks and fragmented sleep, so not surprisingly, I am exhausted today. I seem to be going back and forth. I’m going to ask Rhonda about a drug called Doxepin, which is supposed to help stop fragmented sleep without being habit-forming or causing next-day grogginess.
My lab results came back and are a mix of surprising and bad. I was stunned to see that my glucose was only 82. A1C is still the same, 5.9.
My TSH, as expected—given how cold I’ve been—is elevated at 10.43.
My WBCs are slightly elevated, and my absolute lymphocytes are moderately elevated, but nothing to be concerned over.
My cholesterol is through the roof at an all-time high of 324.
Other than that lower left intestinal cramp I sometimes get, I am just navigating a brain-fog-filled fatigue as usual and wishing I could just get struck by lightning.
6/5/2025
I got the events down, and next, I wish I could believe I was going to get the leaks down and then the frags, but I just don’t have any hope anymore. The nasal pillow won’t work with or without tape or the chin strap.
Took a full Clonazepam before bed. A mouth fart woke me up at around 12:40, and I wasn’t able to get back to sleep, though I slept nearly 6 hours. Still had some frags too. So I switched to the hybrid and laid there with it until 2:15, trying to get used to it.
Here’s my next plan of action before I throw in the towel and end it all at the end of the year. I simply can’t stop mouth farting with the nasal pillow. Yes, it’s the most comfortable, but it just won’t work. I can’t find out if Tom’s right about me eventually “defragging” if leaks keep waking me up. So I’m going to use the hybrid for sure. I think I may have gotten it adjusted a little better. If I still keep leaking awake while chasing this thing called sleep and energy that I’m just not meant to have, then I’m going to do one of two things until I croak. One is to sleep with nothing until I start suffocating awake or feeling that winded, breathless feeling when I’m awake. At that point, I would reach up and grab the nasal pillow, which I’d have nearby.
Another thing I could do is start with the nasal pillow until it farted me awake and then remove it. That way I would at least be doing some CPAP time.
Anyway, I wore the mask again for about an hour. I made sure I could put it on in the dark. I learned how to take it off quicker too. This time around, there wasn’t any hissing from the hose at the top of my head because I sealed it up better.
For now, it has its pros and cons, as with the other mask. The back strap is still a little snug, but I’m getting used to it. There’s a little bit of pressure on the cheekbones, but it’s much easier on my nose. Unfortunately, though, I’ll probably still need nose strips. Definitely like how the hose shoots out from the top and that it’s actually a little easier for stomach sleeping, but that puts me at risk of it shifting and leaking, so I’m going to try to keep myself from doing that. I am definitely more adaptable when it comes to positions than I thought I was. First I managed to train myself to stay off my back because that made the snorting and events worse, and now I’m slowly keeping myself off my stomach. With this mask, I should be able to sleep on my back, but I don’t do that very often anyway as that’s my least favorite position.
The only other issue is that the machine sometimes has trouble with the auto start and stop.
6/6/2025
Ordered a quick-release connection for the hybrid. I ended up having okay energy yesterday, but today has been tough. Tom still thinks we just need to fine-tune things, and then little by little I’ll be able to reverse the debt caused by years and years of sleep apnea. I hope to hell he’s right, because the longer this goes on, the more I feel like it’s hopeless. I got the events down and now it’s time to work on the “farts and frags.”
I think the hybrid is going to be the better mask for me in the end. It’s a lot less leaky. The problem was, five or six hours into my sleep, I woke up needing to pee and couldn’t get the fucking thing back on. It’s easy to grab the magnetic clips on the sides and yank it off, but getting it on is a bitch. So I said fuck it and started to sleep with nothing—until I snorted myself awake. Once I did that, I switched to the pillow and just dealt with the mouth farts waking me up on and off until I got up, exhausted as ever and barely able to remember the dream Rhonda was in, along with me asking Tom about Spain’s climate. I think with the Rhonda dream, I was lying on a table and she was helping me insert something into my bad ear when I said, “That’s as far as I can go.”
Anyway, I ended up napping for a bit, and tomorrow the quick-release will be here. For tonight, I will just sleep with the hybrid until it either farts me awake or I have to get up and pee and can’t get back into the damn thing. At that point, I’ll deal with snorts rather than mouth farts. It seals much better than the pillow, but it does still leak at times at the sides of my chin. I still feel like everything I do is going to end up getting me nowhere in the end.
So glad I could be there for Kathy earlier, and she thanked me for being her rock throughout her latest problem and said she was so glad we reconnected. She found her neighbor’s little 15-year-old dog dead in her yard, and a new break in the fence. She didn’t think the dog looked “graphic” enough to have been killed by any of her two dogs, but they agreed to pay to have the dog cremated and are thinking of rehoming at least one of their dogs, even though Kathy has her doubts that her dogs killed the dog. Well, I wasn’t there and I couldn’t see what happened, but it sucks either way for Kathy, the dogs, and her 70-year-old widowed neighbor.
Yesterday I did some experimenting and made some meatballs that came out awesome. I just gotta up the temp and the time to about 425 degrees and a half hour. I made meatballs with spinach and shredded cheese, and they came out great. I might add some Italian breadcrumbs to them next time to soak up some of the grease and add more flavor.
Today, I sculpted a cute little teddy bear out of leftover colorful clay that I used to create a base for Summer Dream’s bust.
Tom was kind enough to switch out the lobster claw clasps on some of my necklaces with toggle clasps. So much easier this way!
6/7/25
I’m getting 90-something percent sure that the end is near. Can’t take this anymore. I swear I’m worse than before I got the CPAP with the exception of the fact that I’m not suffocating awake or having lung tightness. But I’m still dealing with leaks and frags galore. I just can’t get these things to seal up.
Last night, I fell asleep with the hybrid, and an hour later, I woke in the same position to the damn thing farting but my chin.
We ordered a CPAP pillow that I found a good deal on, but I doubt it’s gonna do me any good. The quick-release connector is coming today. As I told Tom, I don’t think this is fixable. I really think I’m working against one hell of a serious curse. I don’t know why it’s on me or who put it on me, but there’s no getting around it.
I’ve just about exhausted every single thing I can think of to try, other than getting a liner for this mask or getting one with a nasal pillow attached to it, since those do seal better than cradles. I don’t know what else I can do. The biggest problem with the hybrid is that it leaks by my chin, but it leaks a little at the cradle as well. Like I said, my mind and body just can’t take this anymore.
I’m at the point where I totally see myself ending it all at some point after Tink goes. So yeah, God, if you exist, congratulations. Congratulations, you finally succeeded in killing me.
My naively optimistic husband thinks we’re gonna figure it out, but I just don’t see that happening. I’m alive, but I’m not living, and that’s not good enough for me. I’m not gonna spend another 15 or 20 years feeling like shit, not having any energy to really live my life.
As I was saying, the thing leaked me awake an hour into my sleep, and I was going to sleep with nothing, but then I decided to switch to the pillow and just deal with the farts and frags for the rest of my sleep. I was exhausted when I got up and ended up napping. This is horrible. I’m no better than I was to begin with. I feel like we wasted over a grand.
6/8/25
Slept horribly yet again and still feel that something more sinister than sleep apnea is going on. The hybrid is too leaky, so I went back to the pillow and used tape. A few hours into my sleep, I took the mask and the tape that had loosened off after at least two leaks. All night I experienced fragmented sleep, waking up at least half a dozen times and a few times with night sweats. There were a couple of times I thought I was going to have trouble falling back asleep.
I took melatonin before bed, and therefore I had some pretty vivid and detailed dreams, but nothing bad. A couple of hours before I got up, I used the bathroom and then put the pillow back on without tape if only to drive more air up my nose because it was stuffy. I slept for a little over an hour and don’t remember any leak during this time.
Although I did manage to go out to Publix, I am pretty tired today—maybe not quite as bad as yesterday but bad enough. I’m no longer sure what to think, but I do know I’m tired of trying to figure out my health problems. Never once in my life did I say I wanted to make a career out of suffering and having to try to guess what could be wrong with me and hope to solve it. I just can’t keep taking this year after year. This has gotten to be way too much, way more than I can handle.
If a CPAP isn’t right for me, I have no other options. I can’t just request a mouthguard when there are no sleep dentists in network, and I can’t just run out and get the Inspire implanted as quickly as I can request a medication refill. It would take the better part of the year for something that may or may not help, and I don’t think I can hold out that long. I truly believe without a doubt that there is no end to my suffering. Even if this was resolved, there would just be something else. As soon as the worst of the hormonal hell settled down, on came the sleep apnea.
But as I said, I don’t think that’s my only problem. I looked up everything else it could possibly be, and while one report says fragmented sleep is normal at my age, others say it’s not and it’s caused by certain things. I worry that it is a normal fact of aging because Tom has fragmented sleep. The difference is that, for some reason, my body can’t handle it like his can, which makes me think I could very well have the chronic fatigue I’ve feared and suspected I could have for quite a while now.
Stress can cause fragmented sleep, but I don’t think that’s my problem in this case. Stress has affected my sleep at times, even when I was young, yet I wasn’t this exhausted. I thought it was connected to the sleep apnea, but if the events are down, why aren’t the frags down? That leaves heart issues, and I just can’t see that. That’s the last thing I see being the culprit, along with cancers of any kind. All I see at this point is chronic fatigue, hopelessness, and no end in sight.
After reading someone else’s entry, I did a little research, and there’s this guy who believes in 9-year cycles, and then other reports that suggest you go through 7-year cycles continuously throughout life. I thought back to most of my adult life and the times that were worse than others and then the times that were better than others, and I don’t see a pattern. Let me break it down in print and see if anything jumps out at me, starting in 1992 when I left New England:
1992–1999 (8) was mostly good if you eliminate the loud freeloaders next to us.
2000–2004 (4) was mostly bad. I got legally screwed by the welfare bums and then we lost our Arizona house, although these two instances were not connected.
2005–2007 (2) was mostly good as I was doing a lot of sweepstakes winning in Oregon, and Tom could walk to work in just a few minutes.
2008–2011 (3) was mostly bad, then in Cali, due to the recession.
2012–2013 (1) was better as our finances improved and we bought a house.
2014–now (11) has been mostly bad as I went through hormonal hell from 2014 to 2021 when the sleep apnea/fatigue took over shortly before we moved to Florida. One was barely finished before the other one started.
If I’m counting right, this comes to only 11 good years and 18 bad years. This isn’t exactly encouraging. This also isn’t to say that there weren’t some bad moments during the better times and that there haven’t been some good moments during the shitty times, but more like an overall picture.
Tom is cleaning the oven now and it stinks. I’ve got to change the rat’s cage later.
Speaking of Miss Tink, I had two fun dreams with her in them. In one dream, we were in a hotel somewhere and although she couldn’t hop around as much as when she was younger and before she got her tumor, she was having a blast exploring the new place and running around.
The other one took place in the Phoenix house. She was in the back room, and Tom entered the back door and got down on the floor to play with her. I had just stepped out from where the bedrooms were and looked through the kitchen into the back room from the living room. I hit the floor, and she came charging through the kitchen and licked my face affectionately.
In another dream, I was playing with someone’s pet mice, and then I was with an older guy at some diner. We were getting something to go, and he seemed in a hurry, but I couldn’t figure out the menu because I’d never heard of anything on it.
Then I said something totally incorrect in Spanish and had a long, detailed dream with Doc A in it. Actually, it was two separate dreams, just like with the rat. The first time around, I was staying with her, although I don’t know why or for how long. I was helping her fold laundry and we were talking about trivial things. Eventually, Gloria Estefan came up and I told her I once had a huge girl crush on her but later lost all respect for her when she turned out to be a bigot when her daughter came out.
Then I had to use the bathroom, and she was directing me to a bathroom I must not have normally used because I didn’t seem to know where it was. I went in the direction she told me to go, but couldn’t find it. Then she said, “No, it’s over there,” so I went a different direction, and I still couldn’t find this bathroom.
In the other dream, she was napping on a couch and then stirred awake when I entered the room. She said she had a dream about being in Times Square. I asked if she was going back to sleep and she said yes because she wanted to get back to Times Square, LOL.
6/9/25
Having a little more energy than usual, he and I decided to be “bad” after he had to lose a third donation because some incompetent asshole had to go and fuck up, leaving him bruised. So it was the perfect day to take our poor, pre-diabetic asses to the dollar store. We always like browsing through there from time to time anyway, because you never know what little goodies they may have.
There were a few things I liked, but I try not to get anything unless I really need it or totally fall in love with it. I wasn’t really impressed with their coloring books. There were a couple of colorful thermoses and leggings I considered, but said nah. We just got some candy and chips, and one of those round little beanbag pillows you usually put under your neck or lower back or behind your knees. My other one is getting a bit old and stretched out.
As for the latest sleep report, I ended up perking up a bit yesterday and was up a long time. My sleep wasn’t as fragmented, and I slept with the pillow and tape. I have a different kind of mouth tape coming tomorrow that has broader coverage but is said to be breathable while still preventing snoring, which it’s primarily used for. So if it prevents snoring, perhaps it will prevent leaks while letting me breathe through it a bit.
Got the CPAP pillow today but I’m not sure I’m going to like it because it’s very firm. It’s child-sized, though, so it would be ideal if I ever did settle on some kind of hybrid or full-face mask. For now, I’m stubbornly holding on to the hope that I can make the pillow work somehow. It’s the most comfortable and the best for someone with collapsed nasal valves. Only problem is that one nostril is starting to leak a little. It’s nothing like the leaks coming out of my mouth at times or what I experienced with the hybrid leaking from the cradle and by my chin, but I can’t quite seal it as well as the other one. Initially, it had an amazingly good seal. I can see why they have to be replaced every few months. I can feel a little bit of air escaping that side and a faint hissing sound, but again, nothing as obvious as other types of leaks.
I read that EMF from phones and computers can interfere with sleep, so last night I left my phone in the bathroom, and instead of putting my computer to sleep, I shut it down. My sleep was less fragmented, but I’m sure this is a one-time thing that’s not connected. Every now and then, even I sleep okay. I’m sure I’ll be back to the usual exhaustion tomorrow.
Anyway, I slept with the pillow and tape all night. I only remember a couple of mouth farts when I ended up on my back and the tape loosened a bit. My back is a position I seldom ever sleep in, and that’s more likely to cause leaks.
I had a very disturbing nightmare that has me a little worried I’m in for some kind of shit, as if I hadn’t had enough already. As those who know me know, I’ve been having a rough spell, and I wouldn’t be surprised if that’s what the last round of nightmares was warning.
Tom wasn’t with me in the dream, but I was in a small office building with a few small rooms off the main room. There seemed to be mostly women employees around, and all of a sudden, they started to panic over a “single wave” that was coming. “Oh no, oh no,” they were saying, looking out the front of the building at what looked like a dark and stormy sky. It then hit me that the single wave was some kind of tsunami but I wasn’t sure whether or not they were simply overreacting. Most of them ran into rooms on the side of the main room, and I followed a woman into a back room where she quickly shut the door and made sure the window was shut.
“When is this happening?” I asked her. I woke up right as she was screaming “NOW!” really loudly. Definitely not the type of dream you want to have if you’re the type of psychic I am.
The 7th was Doc A’s birthday, and I wished her a happy birthday on her wall, which she hearted, and then tagged me when thanking everyone for the birthday wishes. I sent her a quick message updating her on what’s been going on, including the dreams she was recently in. She read it without replying, as usual. I don’t hear from her much. Don’t know if it’s something about me personally or if that’s just the way she is with most people, but it doesn’t matter either way. I still consider her a friend, and everyone has a right to communicate as much or as little as they want with whoever.
Kathy has been a different story, messaging me a lot, and damn do I feel bad for the poor girl! Things are escalating with her neighbor. I don’t know the whole story or just how innocent Kathy really is, but I definitely get the impression that the problem is mostly with the neighbor. The woman didn’t supervise her dog; it went onto someone else’s property, and therefore, she’s got to deal with the consequences. I don’t think it just died, though, even though it was old. I think one of her dogs probably did kill it, but I didn’t tell her that because that’s not what she needs to hear right now. I think Kathy herself isn’t sure exactly what happened.
She did tell the guy who cremated the dog to be the one to directly deliver the urn. She sent me a screen shot of her text to the guy, saying she was covering her bases, and besides, the police told her not to have any direct contact with her and they acknowledged that the woman should have kept tabs on her own dog and not allowed it to wander onto other people’s property. Kathy said she took her own dogs indoors last night, which she now refuses to rehome, understandably, which should be the case every night, at least in my opinion. I think dogs should be pets or they shouldn’t be kept at all unless they’re specifically trained guard dogs or something like that.
Anyway, I’m not sure if the woman has mental problems or took advantage of Kathy’s kindness or what, since I never met her. But the fact that Kathy’s Mexican and has kids should help her as opposed to a childless, widowed white woman. Most don’t see it or want to admit it, but I know how things have been the last 30 years or so in this country. Kathy definitely isn’t like a lot of the Mexicans, though. She doesn’t want welfare, she doesn’t want to join a gang, and she’s not a dealer or a druggie. She’s just your typical working mom.
Anyway, I looked up her house on Google (the address was in the text), and while it’s a pretty decent hood she’s in—omg! The houses are even closer than here! I would absolutely hate living there. I can imagine all the barking, screaming kids, and boom car stereos. Just like in Phoenix, anywhere in the mainstream is pretty much like that.
Finally got a couple of little tomatoes from the plant in the hydroponic. We have one there and one outside in the planter that the lemon tree is in. I gave one to Tink and ate the other.
6/10/25
Once again, I didn’t seem to wake up as much, but when I woke up to pee—so much for the CPAP cutting that out—I had trouble getting back to sleep, so I took half of a clonazepam pill. Same issues with the mouth leaks, and I woke up tired.
I just can’t get a good seal with either mask, and I still fear that I’m never going to find the right one. And where do I even begin to look? These things aren’t a few dollars a pop. It’s not like I can just go out and buy one of each and experiment with them since they do cost quite a bit of money, especially if I have to get a new frame and harness. I’m not sure if I’m going to get a full face mask or a hybrid with a nasal pillow, but I’m starting to think a full face might be my best bet, plus a liner. The research I’ve done suggests liners are not only more comfortable but tend to give you a better seal.
They have a printable sizing chart, but right now we don’t have a printer that can print. We fucked up by getting an inkjet when we should have gotten a laser. That way, the ink would last longer.
I just feel so overwhelmed and like I’m not getting anywhere with the sleep issues. I don’t suffocate awake anymore, and the number of events is definitely down, but what good is that if I’ve traded events for leaks that disrupt my sleep just as easily? I can’t rule out chronic fatigue until I can stop things from waking me up—or at least cut way back. But I still fear there’s some kind of curse on my sleep and nothing I do is going to stop that. As I’ve said before, it’s like it’s using my own health and body against me because I’m now in a quiet place where traffic doesn’t wake me up several days a week. I try to tell myself that if this doesn’t get resolved, I can live tired. Well, I’ll be existing instead of living, but I can survive. I’ll feel crappy most of the time, but things could be worse, and it’s not like I drive or have a job I have to be at. So even though my activities will be severely limited and I’ll have to pace myself and take breaks by lying down for a few minutes here and there, it’s still better than the anxiety I used to go through. Besides, if it were suddenly resolved, I would just go into a whole new problem. So yeah, after we’ve wasted a little more money on another kind of mask that’s destined to leak—at least for me—I’ll just have to cut my losses and accept that at least I shouldn’t suffocate awake or feel really short of breath during the daytime anymore. Just tired. But hey, I do have some good days mixed in. They’re only once or twice a week, but they’re there. I’ll just appreciate those good days even more when they come around.
I’ll never go to the beach again or anything like that, but so what? I’ve been to the beach enough times in my life. And no, if by some miracle we ever did have money, we couldn’t move, but this isn’t the worst place to be, so that’s okay too. I do like the weather here, despite the storms sometimes waking me up and the stress of hurricanes. So yeah, I’ll be okay. Sure can’t deny that I miss so many parts of my old body and life, though. But they can never be again. I just miss some of the old feelings I would have and the way so many things seemed so new and exciting. Even just the thought of some things was different than they are now.
Hell, I haven’t even had a crush on anyone since 2016. I miss having eye candy to inspire my creative side by including them in stories I’d write. But at this age, you just don’t have the feelings you had when you were younger. I’d settle for better sleep and better energy—but again, that’s just not in my cards. Oh well. At least I’m not blind or paralyzed or anything like that. Even the anxiety was a lot worse.
I wish I were one of those who could dive into role-playing, really sink into a fun-filled fantasy world as an escape, but I can’t even come up with the enthusiasm and imagination for that much anymore. Strange for someone who’s always been so creative. I recently read that the youngest child is often underestimated but is usually the most creative. How true that is in my case! Even when I’m not as creative, I’m still pretty creative compared to how my siblings were/are. Never had a damn thing in common with either one of them. Just the abusive mother and enabling father.
I’ve tried to think of different things to do when I’m on nights and he’s asleep. I thought of bringing some of my old characters to “life”—be it totally made-up characters or those I actually knew. Bringing them to life by imagining them here and chatting with them, since there wouldn’t really be anything else to do but chat. But what would we chat about, and how often could I do this type of thing anyway? I thought of alternating characters and switching them up regularly for variety—but again, how often would I do this, and what would we discuss that often? And what about when I was eating or doing other things? Would I somehow incorporate that into the little game? I don’t know what to do or think anymore, but I think that, tired or not, I want to hit the road. I’m still in the middle of Eastern Hungary.
Had fun chatting with Kathy tonight. We talked about Kim, Molly, old websites, inflation, stores, coloring books, and more.
The guy delivering the dog’s urn said her crazy neighbor was pressing him for info, demanding to know if there was any evidence that her dog was attacked because she wanted to take it to the PD or something like that. As far as Kathy knows, though, she’s got no case against her and won’t be summoned. I hope not, because this would be one of those rare instances where you couldn’t not show up to court, being neighbors and all that. If she refused to go, the neighbor could call the cops, saying she was hearing screaming or something like that over there, and when they ran a routine check, she would get arrested for failing to appear.
I can’t say who’s responsible for the gap in the fence, but the neighbor is definitely at fault for not watching her dog. Do I believe Kathy’s dogs didn’t attack it? Not really. I think a lot of people forget that just because a dog is friendly to people doesn’t mean it’s going to be friendly to an animal trespassing on its property. Still, the neighbor should have kept tabs on her own dog.
6/11/25
What would I tell my younger self? Such a popular journal prompt. I would definitely tell my younger self that people don’t change, and I shouldn’t be forgiving. It almost embarrasses me to think that, as late as in my 50s, I believed that if I simply explained to someone what they did to offend me, I could expect them to listen, understand, and not do it again.
Anyway, I wish every day could be like today. Not only do I have good energy, but after the dream I had, I knew it was going to be a good day.
I slept with the nasal pillow and tape for the first 4 hours or so. But then, when the leaks started getting to me, I took it off and inserted the nasal dilator. Again, my sleep was less fragmented, and I didn’t have the foot cramp I had yesterday that I shouldn’t have had because of all I drink.
First, I dreamed that I was in an exam room. A doctor entered the room, and Alyssa was following close behind. I wondered if she recognized me, but I didn’t want to say who I was. She seemed hesitant to explain to the doctor why she needed to be seen. I was just about to say I would wait out in the hall when she started talking.
Then I dreamed that I got a phone call informing me that I won a house in Florida. Only we were still in California, and he was still working. I told the woman that I’d love to have a house in Florida, but we couldn’t just pull up stakes in just a few days. I ran to get Tom, but I couldn’t find him anywhere in the house. Then I heard the shower running and hoped he would be out soon. While I was waiting, I asked the woman how big it was, and she told me it was over 1200 square feet. Still a bit small, but bigger than this.
I woke up feeling like it was a sign of good news to come. And sure enough, that cataract surgery we thought was going to cost close to a grand is only going to be $25! Not only that, but it’s to be done at the end of the month. There will be three different eye drops he’ll have to take, which will also be free. As if me not driving is bad enough, I’m going to have to sleep during that time. He assures me it’s fine and that he’ll take advantage of the free rides he’s going to get. I know it’s out of my hands, but I still feel bad anyway.
Sure makes me shake my head at a Facebook reel I saw that says that before we’re born, we pick our family and our struggles. No one chooses to be poor, someone said in the comment section. No shit! Nor do they choose negative, neglectful mean bitches like my mother was, or health issues, including a couple of nasty sleep disorders. No one wants to have to take a thyroid medication they’re sensitive to and that can make them very anxious. No one chooses to have the horrible neighbors we once had, or the shit some of them did to us.
In the end, it was a great day overall. Wish it could be like this more often. Instead, my energy levels—and therefore my moods—are still rather bipolar. In other words, I’ll be tired tomorrow. Going to try a drink they say helps with fatigue this weekend when we order groceries. It’s maca powder.
6/12/25
Back to being tired I go. I’m trying to convince myself that while I would just be alive and not living, it really is okay to live my life tired, because tired is better than dead. Right?
Anyway, the new mouth tape does provide better coverage and is perhaps a little more comfortable, but the same thing keeps happening—if air doesn’t actually escape, it fills my mouth and I wake up to my cheeks expanding like I’m trying to blow up a balloon in my sleep. Initially, I had a spark of hope because the pressure setting starts off at 4, and it seemed okay. Once it gets up to 11, though, I start having issues. We talked about lowering the pressure, but I might have to make it too low to stop this from happening—and besides, if it’s going up to 11, then that’s obviously what I need to keep my airways open. I still say there’s no fixing this and that there’s some kind of curse on my sleep, and it’s going to get around anything I try.
So knowing that I’m unlikely to ever be able to get a mouthguard—since there aren’t many sleep dentists and they usually don’t accept my insurance plan—and I’m even less likely to have the Inspire implanted, I might as well cut my losses where they’re at. In other words, I can start off the first three or four hours with the mask, and then I’ll have to take it off when leaks become an issue. I think that should be enough, not to restore my energy, but to at least keep me safe. I just can’t sleep with the thing full-time, otherwise my fatigue is just as bad, if not worse. There’s no getting around it, though, so I need to finally just accept it for what it is.
I woke up with a headache today too, but I think that’s likely more on allergies than sleep apnea. My throat is a bit sore too, so I think I’m going to have to raise the humidity again. It should be okay since I can’t sleep with it more than a few hours anyway. I just remembered that a sore throat and headaches can be symptoms of chronic fatigue. God, I hope not! Days like yesterday give me hope that I don’t have CF. I’m never going to be able to rule that in or out if I can’t sleep with the CPAP full time.
Tom is going to get a basic lens even though he’d love the deluxe $900 lens. They even have a lens for over 3 grand that allows you to see even with your eyes closed! I don’t think I’d like that when I was sleeping. I’m hoping I’ll never have to have cataracts removed, since, unlike him, I grew up in the Northeast rather than the Southwest, and in my case, it would do little to nothing to improve my vision.
Kathy and her husband are still being harassed by the bitch next to them. I think she made a mistake in going against her agreement with the PD by replying to her texts. Even more so to delete them. I know the phone company could pull it up, but she should keep all the evidence she can. She said she told the bitch off and blocked her. I would completely ignore her without blocking her. I’d want to leave the opportunity for the bitch to dig her own hole by saying the wrong things in a word-sensitive country. Especially if I were a minority with children.
Since I don’t remember if we ever discussed my own nightmare with shitty neighbors back around 2010ish when we first met online, I left her some audios telling her about it.
Decided to spoil myself and do something fun for once. Every now and then we need a break from “behaving.” So even though I don’t need them, I took advantage of a great deal I found on Amazon—10 coloring books for $18. That’s less than $2 a book! I shared the link with Kathy. She may be interested. The quality of the books may not be the greatest, and they may not have as many designs to color, but I will definitely have a good variety: flowers, animals, mandalas, quotes, people, and places.
6/14/25
And back to having good energy I go. I swear my energy levels have become totally bipolar. So that means I’ll be tired tomorrow. Hopefully not as anxious and hopefully with a lower HR, though. It’s been 19 days since I last had to skip a dose, and I’d say it’s definitely ramped up. I’m not cold anymore, I’m more hot flashy, and my HR has been between 95 and 110. I’m also starting to feel that adrenaline kick in the center of my chest. I’ll give it one more day to see if something else is going on, even though I doubt it, and then I’ll skip as many times as it takes to bring it down. I’ll just try not to overdo it this time.
Definitely going to have to figure out how to have better timing before I go back to the lab at the end of the year. I just hope I won’t have to go back until then! I don’t think my absolute lymphocytes are high enough to warrant any sooner testing, which would be nice because I really don’t want to have the stress of appointments during storm season. Other than an eye exam, I shouldn’t have anything until September when I return to the dentist.
I misunderstood Becky. She said she uses the nasal pillows, which I thought were the ones with prongs you insert into your nose like what I have, but she’s actually using the cradle, which she calls either a cushion or a pillow. She said she tried the one I’m using for 6 months and didn’t like it. The only thing I don’t get is if she had leaks with the pillow, why isn’t she having them with the cradle? I verified with AI, and if you have problems with one, you’ll likely have problems with the other.
As much as I wish the pillows would work out, they’re horrible, and not just because of air leaking out of my mouth. I didn’t realize they had such a short life. After just a few weeks, they lose their shape and consistency and start leaking. I have to struggle to seat them properly, otherwise I get air leaking up into my eyes like I did with a cradle. First one side started giving me shit and now the other side is a problem. So I switched to the small pillow that I have, and I’m pretty sure I can make that work until I get something better.
In a couple of weeks, we’re likely going to get a full-face mask with liners. I hate to have something that intrusive, and I hate the DreamWear harness, but if it’s going to give me a good seal, then so be it. At that point, I may start using the CPAP pillow, which I don’t really like that much. It’s a bit high and firm, but as Tom said, pillows sometimes need to be broken in like new shoes.
My sleep was a little more fragmented despite having more energy today, not just because of leaks, but I also had a really sad dream about Tinkerbella. For some reason, we were forced to rehome her, although nothing could get us to give her up in real life. She was only a year old in the dream. We gave her to some woman we didn’t know, and after she was gone, I was crying and depressed and worried for Tink. I wondered if she was scared to suddenly be in the hands of a stranger and worried she wouldn’t be treated well. That would definitely be a terrible thing for a rat, or any other animal of intelligence that is aware of what’s going on around them.
Other breeds of rodents are so stupid and antisocial and pretty much live in their own worlds, oblivious to what’s going on around them, even the ones that tolerate being handled and patted. Therefore, they wouldn’t really have the mentality to realize what was going on as long as they were getting fed.
Then I had a weird dream that I was living with some woman who might have been my mother. One evening, she took me over to her friend’s house, and she decided to leave me there. I wasn’t happy about it, but I tried to just go with it and offered to show the woman a book of sketches I did. But a split second later, I was looking at her closed bedroom door and knew she had gone to bed. I entered the guest room, wishing I had the CPAP and hoping the bed wouldn’t be too uncomfortable or that I’d have trouble sleeping.
In my last entry, I was talking about how people don’t change, and while I like Kathy and I’m glad we reconnected, she’s a classic reminder of that. Every day she posts tons of bitchy, self-defensive, and even somewhat aggressive-sounding memes. While some of them make sense and I agree with them, I can see that her vengeful side still lives on. Let’s just say that if Ask still existed and I could still allow anonymous questions there, and she got pissed at me, I wouldn’t put it past her to troll me there with the help of her friends and family just like she did 15 years ago.
I see a lot of my sister and nieces in her, with the only difference being that Kathy is actually fairly smart and can write. I don’t know if there’s been any more contact between her and her neighbor, but every day she’s been posting Karen memes in regards to the neighbor. I’m not worried about it if I ever pissed her off because it’s easier to block people these days as opposed to 15 years ago. She’s a reminder, however, of why it’s important not to mix socials or to at least be very careful who you do share what with.
I’m usually pretty good at getting a sense of who may go ballistic on me if they either dumped me or I dump them, but every now and then, even I get caught off guard. The only thing that may be a problem these days is the fact that people can keep creating new accounts to come at you from if you allow comments/contact. People can also involve your connections just like Molly did to both of us once upon a time. I have a small group there, though, that I’m connected to and that would gladly have my back. So yeah, things are different in a better way, but it’s still wise to be cautious.
The only other thing that annoys me a little with Kathy is that I see that same one-sided pattern I see in so many people. She sent me many long messages about the neighbor, and I replied to every single one. Then I sent her a handful of audios telling her about my own nightmare neighbor from years ago, and while she did “heart” one of them, I got absolute silence in return. This isn’t the first time either. I’ve been back in touch with her enough to see that she only responds if I ask her a question or if it’s something she can relate to. She also doesn’t usually take the initiative to ask about me.
Usually, if a friend is having a hard time, I’ll check in with them and see how they’re getting by. If she messaged me saying she had to have a tooth pulled, I would tell her good luck, and then I would ask how it went when it was done. If I said that, I likely wouldn’t get any kind of a reply, let alone a follow-up. Not everyone is like this, but it seems that the vast majority of people are. If it isn’t about them or anything they can relate to or benefit from, they’re not interested.
6/15/25
Happy 31st anniversary to us! My schedule is in a place where it makes it hard to do much, and we don’t have a lot of extra money, so we decided to splurge on Burger King. Because we seldom do it, it makes it all the more special, even if our bodies don’t agree with it nearly as much as 30 years ago. As older people, we can’t quite eat as much, especially him since he’s 8 years older. We were looking at an ad for a triple burger while we were waiting for food, and I commented on the fact that neither of us could eat that much now. He said he could have 30 years ago. True, and I could have come close too during perimenopause or the day before periods, lol.
I love that every day I can think of something to say in my journal, even if it’s mostly the same old mundane things. I’m glad I’m not like I’ve gotten to be with my creative writing when it comes to my journal.
My coloring book bundle arrived today, and while it makes for a fun variety, it wasn’t quite what I expected. I thought every book would have a different theme, but as you can see, I got four mandalas, four animals, and two with patterns that are mostly floral. Also, the pages are perforated, and they’re quite thin. Because some of the images are printed back to back, if you use markers, they’ll bleed through. I love how some of the illustrations have colored backgrounds. I was a little surprised that some are partially colored, but I’m okay with that since it wasn’t a lot.
Now, for my surprising news: I’ve actually had four days of energy in a week! Usually, I’m lucky if I get that in an entire month. I asked Tom if he thought it was mostly the CPAP or the levo ramping up in my system, and he thinks it’s mostly the CPAP. I’m inclined to agree! I’ve had way worse numbers than I last got, and didn’t always have such epic fatigue. The med is accumulating a bit much in my system, though, and I do have to skip tomorrow’s dose. My heart wasn’t too racy today, but it was beating hard, and I was warm and feeling wound up enough to take half a clonazepam. Plus, it can disrupt sleep.
Anyway, I switched to the spare nasal pillow and it sealed beautifully, just like when the first one was new. Amazingly, I had no leaks. But my sleep did get broken up, making it even more amazing that I had energy today, or now, yesterday. It took me over an hour to fall back asleep, but it was way too early to get up and would have put my appointment at risk, so I stayed in bed for a total of 8 hours like I try to do. Not taking any antihistamines before bed, shutting the devices down, and not sleeping with the phone in the same room does seem to be helping as well. Anyway, I only had a couple of leaks escape my mouth after I fell back asleep as I had peeled off the tape. This mask is still wrong for me, even if it’s the most comfortable. Now I know that not only does it leak, but it doesn’t last the 6 months most other masks last, and that would be pretty expensive, having to get a new one every month.
Another popular journal prompt seems to be: What do you consider worth forgiving? Well, even though I wouldn’t take them back into my life or associate with them in any way, I can usually forgive the types of things that don’t have a major impact on me. It’s when people know damn well what they’re doing and intend to inflict verbal, emotional, physical, or financial harm—that I could never forgive, even if I wanted to. Even Andy’s forgivable, because technically there’s nothing to forgive in the first place. He and I simply have personalities that clash.
6/16/25
Charlie, the park handyman, came to weed Ray’s place by hand and with a weed wacker. And it wasn’t even 7 AM. I know it’s been very hot and humid lately, but still, that’s kind of rude.
Woke up a little tired, but even though I slept with the CPAP the entire time and amazingly had no leaks for the second time in a row, I think I have a valid reason for why I’m a little tired. First, we had a power failure early in the morning. Every few houses has a transformer behind it, and the one behind Toni blew out. With my bedtime delayed and me a little wound up because of it, I took melatonin, which had a hand in my sleep being a little more fragmented, as well as the wine I had too close to bedtime.
I know I had a lot of dreams, but the only one I remember had to do with Christiane pulling me aside in some public building to tell me I wore the same things too often, lol.
I tried the maca powder in my drink, but I can’t say if it really helped with fatigue. I read reviews on it, and some postmenopausal women swear by it, along with those still getting periods. It did say it can interfere with hormonal treatment, so since levothyroxine and estrogen are both hormones, I messaged Rhonda to ask if a teaspoon a day was okay, since I’m getting the impression that it takes time to build up and take effect. Obviously, I’ll still have to wait for 4 hours after taking the levo.
I rearranged my Google Docs tonight. I decided I wanted them in the same account rather than having journals in one, stories in another, and various odds and ends in another. In order to tell stories from non-stories quicker and easier, I put colorful emojis on the non-story docs so they would stand out better.
6/17/25
Just when I thought my lung tightness was tied to the sleep apnea before I got the CPAP, my lungs were tight again at the end of my day. I even had a coughing fit in my sleep. Why does the past always return to haunt me? Anyway, my asthma is clearly being aggravated by the airborne allergens. I really hope to hell this doesn’t become a regular problem so I don’t have to make yet another appointment with this pulmonologist that I don’t really like very much.
Instead of talking to me directly, Rhonda replied to her nurse, who shared the reply in which Rhonda said, “Maca is a food supplement that is used for different types of symptoms, but I don’t know anything about the safety or efficacy of it. She’ll just have to read the bottle on it. It’s not something we can run an interaction on in the system, and it’s regulated differently from medications. However, the rule of thumb is that vitamins and supplements should be spaced 4 hours from levothyroxine.”
Well, what good is she if she can’t tell me anything either way? I decided to just use it on days I have fatigue. I had a little today and yesterday, which is disappointing after having a promising week with four days of good energy in it. Tom still thinks I’ll gradually get better and better, and I hope to hell he’s right.
My sleep is still a bit fragmented at times, too. So I don’t know if shutting down my computer and getting the phone away from the bed really helps after all or not. What really sucks is that it’s so hard to get everything balanced just perfectly and keep it that way. There are so many different foods and supplements that can interfere with thyroid one way or another and even give false lab readings. Hell, I just learned that even the estrogen cream can indirectly interfere with thyroid, but hopefully I don’t use enough of it for it to do that.
It’s a good thing I didn’t know what was going on for about two and a half hours behind Toni’s place while I slept. Otherwise, that would’ve put a lot of stress on me. I was already under a little stress thinking a storm might fuck with my sleep but it didn’t. The electric company came out to dig a four-foot deep hole, according to Tom, because I guess they were splicing a damaged cable. He was worried that they would cut the power, but they didn’t. It’s a good thing I didn’t hear any banging when they covered the box up, but I did have the sound machine turned up a little bit because I thought it was going to storm.
Later…
Trying not to get too ahead of myself, but I’m feeling that spark of hope once again that I just may get my life back and that I don’t have chronic fatigue on top of sleep apnea after all. Yesterday and the day before, I did have a little fatigue, but not epic, off-the-charts, debilitating fatigue. Can’t say whether or not the maca helps, but I was still able to do the things I normally do. Today I’m a little better, and it was the third time in four days that I was able to sleep without leaks.
Therefore, we decided we would get me a cradle along with a full-face mask with a liner, so I have a good variety. The hybrid is not a good option, and besides, we now know that the nasal pillows that go just inside the nostrils won’t last long anyway.
Here’s the interesting thing—my schedule has been slowing down in that it’s not rolling as fast. When the fatigue was really bad, I was having huge jumps, and then I would hold, and then I would jump again big time, and back and forth. Now it seems to be doing a slow and consistent jump, sometimes holding or even backing up a bit. My schedule has backed up 5 hours since I originally scheduled my appointment with Rhonda, so I have to really make sure that I hit my stay-up targets. Today I can’t let myself crash before 9:45 AM. I want to stay up an hour and 15 minutes later each day until the appointment on Monday. If I don’t, then Monday is going to be a hell of a long day because the appointment is at 2. When I first scheduled it, the scheduling program was saying I would get up at 8:00 AM. Now it’s saying I’m getting up at 3:00 AM. So I definitely can’t afford to have it slip back any more if I can help it. A long day with better energy, however, would be a lot more doable than a long day where I’m absolutely batshit exhausted.
Tom says it makes sense, though, because when I was really exhausted, I was forced to lie around a lot, which would make me stay up longer in the end and also sleep a bit longer. Now I’m still sleeping the typical 7 or 8 hours I normally sleep, but I’m not staying up as long. Yesterday, I was out after 15 hours when I was hoping to stay up another hour or two. But now that I have more energy, I’m a little more active, and therefore I’m not up as long. In time, I might be, but it can take a good six months or so after starting treatment at the beginning of May for my body to really settle in. Paying off a five-year sleep debt isn’t something you do in a few weeks or even a few months.
Strange how it’s those little things that can turn out to be a big deal. When I first started having the fatigue, I thought it was tied into menopause and would pass as I settled in, just like I thought that little stomach cramp was just a pocket of trapped gas, not knowing it was actually a dying gallbladder.
I just hope the storms don’t throw anything off! They’re unpredictable. Many times they say it’s going to storm and it doesn’t, and then there are times when no storms are predicted, yet we get hit with them. I swear I heard the mowers just after I fell asleep, but I fell back to sleep a second later. Really hope they don’t get in the habit of using the loud one too often!
Tried to get back into my creative writing and pick up my blackmail story with Nane in it, but I just couldn’t get into it. I just can’t motivate myself to be the type of creative writer I used to be.
6/19/25
The skies sound like a war zone tonight. Given that it’s after 2:00 AM, I guess it would be pointless, after all, to try to stay on days during storm season. This one would be a genuine nightmare to sleep through, because it’s not fast-moving at all. It’s going on and on.
I’m gonna take a break from my Blogger blog because my editing code on Blogger is broken, and we can’t figure it out even though we tried for hours. It seems as if it doesn’t recognize me as the blog’s administrator, in which case it wouldn’t show the pencil icon. One of the things I always liked about Blogger was that there’s very little change there. However, they obviously changed something in my template that screwed it up. With all the damn European laws they’ve got now, that might be why. I’ll bring it up to date at some point. It’s just that without the QuickEdit tool, editing stuff I may want to change or add later is a real pain in the ass.
I totally jinxed myself by saying I wasn’t staying up long and had more energy. The only good things I can say are that, yes, shutting down my computer and getting my phone out of the bedroom definitely causes me to wake up less often, and I managed to sleep the fourth time in five days without leaks. That’s not how it started off, though. First, I was dragging and thought I wouldn’t be able to stay up as long as I wanted. But then I ended up being up for nearly 20 hours! This is partly because every time I would start to fall asleep, air would escape my mouth and I had a hard time falling back asleep. Melatonin didn’t do the trick, so I added half a clonazepam, which is probably also part of why I’m tired today. I slept like the dead, for the most part, when I finally did knock off for good. But now I’m right back to being exhausted. I napped for an hour or so, but it didn’t do much for me. Just added some maca powder to my smoothie, so hopefully it will give me a boost of energy.
Monday can’t come fast enough! I just want to get this appointment over with. After that, I may lose the tape for a while and see how I do. I mean, it’s great that I’m having fewer leaks, but it would be even better if I didn’t have to tape my damn mouth.
6/20/25
Not feeling good at all right now. I’m pissed, tired, and stressed out. I’m pissed at Google for removing the editing tool on Blogger without even telling people and making us waste hours digging through code thinking something was broken, only to find out they yanked the damn feature. My guess? They’re slowly trying to phase out Blogger and drive people off by taking away handy tools. Editing old posts is now a total pain in the ass unless I want to scroll through forever or try a keyword search, which doesn’t always work.
Just when I started to feel hopeful that I might not have chronic fatigue, I get slammed with fatigue again. Yesterday I was tired because I stayed up way too long, but I’m still exhausted now. Yes, I took the mask off a few hours before getting up, but still—I shouldn’t feel this tired.
And now the power outages are happening more often. Yesterday it was out for an hour, and then it flickered off and on around 2:00 AM. No storms were happening at either time, so who knows? There are so many downsides to living here, but with no money or energy to move, I guess this is it. Our “forever home.”
This June has been stormier than I’ve ever seen. It’s daily now—sometimes multiple times a day—and it’s stressing me the hell out because I keep worrying that it’s going to wake me up and leave me even more exhausted before my Monday appointment. A storm’s rolling in again right now. Tom got woken up last night, but he was fine because he doesn’t have such fatigue.
Even though I’ve basically given up hope of ever getting my energy back in any lasting way, I do hope my appointment lifts some of this stress off me.
Meanwhile, I’ve been testing out a site called Yupp AI that lets me earn up to $50 a month by picking which AI response I like better and explaining why. What blew my mind was that I gave it a month’s worth of journal entries and told it to put them in chronological order—and it actually did it.
When the power was out, I used the EMF reader on Jade again and got nothing. Now I’m starting to doubt she’s haunted after all. Still doesn’t explain why there was no EMF when I moved her and then tested the spot she was in earlier, but once again, I’m doubting the afterlife or reincarnation. Multiple universes…maybe. This means I might not bother getting a supposedly haunted little blonde doll from Etsy like I was planning. I’ll do another test on Jade in her old spot and decide after that.
6/21/25
Yesterday’s fatigue was horrible, and it really hit home that, yes, this is almost certainly chronic fatigue. So yes, I’m going to be severely limited for the rest of my life. I think the sleep apnea was only a little tiny part of it, and that’s even with sleeping with the mask half the time as I did the last couple of nights, not because of leaks but because I just couldn’t get the damn thing to seat properly after removing it to go to the bathroom. But I use it enough to know that my problem is much bigger, sinister, and more complex than just sleep apnea, even though AI said that even with my level of sleep apnea, sleeping with the mask consistently is critical for effectiveness. CF or not, I worry that we’ll never find a mask that fits properly and that I’ll never be able to get a mouth guard or the Inspire as an alternative.
Healthcare in red states sucks. I totally regret moving to Florida at times. All I saw was warmer weather and a cheaper place. I didn’t see the big picture. But now we’re almost certainly going to be here for life due to a lack of money and energy. At least there are worse places to be stuck in.
Now, here’s an interesting Jade update. As I mentioned before, she stopped being active, then became active again, and now she’s back to being inactive. I asked Melanie for her theory, and she thinks it has to do with electronics. She said she doesn’t keep her haunted dolls in the living room because there are a lot of electronics there. Apparently, spirits draw energy from electronics, so what she gets is unreliable there. I find this fascinating because the laptop in the bedroom has been off more often to help with my sleep! It’s also off when I use the one in the kitchen. After I post this, I’ll test Jade before turning it on and then test her again.
Since the assholes at Blogger are phasing out the editing tool, Tom thinks we can get around it by writing a program and adding our own code. If we can’t, we can’t, though. I don’t like the layout or archive on Tumblr as much, but I like how I can post tons of pictures or videos every day if I want to. Separating the entries with aesthetically pleasing images looks cool. I have tons of images picked out, mostly nature stuff and some animals.
6/24/25
Before Rhonda…
On the way to Rhonda and exhausted as fuck. I doubt I’ll post this today. My sleep was broken up… again. I don’t know if it woke me up or if I woke up and then noticed it, but my nose was stuffy. I probably burned too much of the awesome incense cones we got with our Walmart order, so I had to get up and play nose and use my snot spray. It took a full clonazepam to put me back out. Slept for the rest of the night maskless. As I knew I would, I woke up exhausted.
We had to bomb this place because these little black bugs were biting my feet. Not sure what they were. We sat in the driveway for two hours with Tink in her little pink carrier. Just like last time, she was so good. She sat in her carrier the whole time, even though the door was open. She demanded to be patted at times, of course, LOL. She also devoured the piece of a Cheeto I gave her.
We ate, and I lay down for a bit after we aired the place out. I feel warm, tired, and heart racy. Hopefully, in less than three hours, I won’t have to worry about schedules and appointments for a while! Just the usual fatigue and possible storm and power disruptions.
I still can’t say for sure whether or not the maca helps. It seems to at times. I know I felt like shit for a while yesterday, as just going to Walgreens took a lot out of me, but I felt better after a while. Still, and as I intend to discuss with Rhonda, I greatly fear chronic fatigue. Something ain’t right. I should definitely have more energy more often. I don’t think it’s my thyroid. It would definitely help to find the right mask so I could sleep with it full time. We ordered a full face with liners and a cradle.
After Rhonda…
I left Rhonda’s office feeling better, but not. The frustration came to a head, and I was even teary-eyed when explaining to her how shitty I’ve felt. She agrees I probably do have chronic fatigue and doesn’t know if I’ll get better. Tom feels so confident that I’ll get better, and he was right when it came to the hardcore anxiety. But the impression I got from her was that she didn’t feel very hopeful. I’ve got so many things working against me. Things that are harder to deal with as an older person. As she reminded me, we can’t handle the things we could handle as well when we were younger. I’ve got my thyroid, my A1C, my sleep apnea, and just being old working against me. Even being fat can cause fatigue. Perhaps everyone’s different, but I can say without a doubt that there isn’t a single good thing about aging. Yes, we do get smarter and less emotional when the shit hits the fan, but I’d rather be a dumbass basket case who felt great as opposed to how I am now.
When she broached the subject of an endocrinologist, I told her why I had no luck with them, explaining the last one told us to do some crazy stuff and was likely involved in kickbacks, and that the one in California wouldn’t believe me when I tried to tell her that levothyroxine could make me anxious if I got in the target range. She said that while they do care about numbers, as that’s what they’re trained to do, they also believe in listening to their patients. We definitely know our bodies best!
I don’t think I’ll ever lose weight because I can’t get my TSH in the target range without feeling anxious. I’m always going to have at least subclinical hypothyroidism. So I asked her, “How can I continue to lower my A1C without dropping weight?” and she told me what I already know, but my brain fog momentarily made me forget, and that’s to lower my carbs. So I really need to get serious about following a diabetic menu plan. She recommends no more than 100 to 125 carbs a day.
I also mentioned that since having my gallbladder removed, it can cause absorption issues, and she said she has heard of that. So that right there is another thing working against me. She wants to test my thyroid after I’ve been consistent for about 6 weeks with no skips. So I have to really back off the vitamin D that doesn’t come from food, and hopefully I can go to the lab around August 1st.
I told her that I’ve been waking up a lot and asked about the Doxepin I looked up, and she agreed that there aren’t any medications out there that don’t have side effects. She’s going to start me off at the lowest dose. 6 milligrams is what they use for sleep, and 25 is what they use for depression. It’s used to treat mood disorders for the most part. It’s not an SSRI, but it can cause suicidal thoughts, and it’s safe to stop it if there are any side effects. I later read that it’s not safe to suddenly stop it, but I’m gonna take her word for it. The thing is, how am I going to know if I have suicidal thoughts when I have that most of the time anyway with how shitty I’ve been feeling???
There was one thing she did say that was encouraging. I hope she really knows what she’s talking about because she says it could take up to six months to really feel the benefits of CPAP treatment, and says she doesn’t see how I could not get more energy after that amount of time. Well, getting the right mask will certainly help if there is such a thing for me.
I didn’t tell her this, but I’m going to give it to the end of the year. I really, really can’t keep suffering for the rest of my life. If nothing I do can alleviate the extreme fatigue, I don’t think life is worth living at that point. I just can’t see myself able to handle living in a fog for another 15 to 20 years. I want to live and not just exist. I’ll give the Doxepin, lowering carbs, and the CPAP a little more time, though. The Doxepin is supposed to help people fall asleep and stay asleep. I doubt I’ll be able to handle the side effects, whichever ones I get, because I’m very sensitive to medication. But I’m too desperate not to try something. I haven’t had too much trouble falling asleep lately because of the exhaustion, but I’m still having trouble staying asleep. Not quite as much as when I was leaving the devices on and near the bed, but it’s still bad enough, and yes, I know it’s part of aging. The older we get, the shittier we sleep.
In six weeks, assuming I can stick to the Doxepin that long, we’re going to have a virtual follow-up appointment.
Just the other day, I asked Tom when I last had a tetanus shot, and he said it had been a while, but he doesn’t remember what year. She was able to tell that it was in 2014, so I’m definitely due for that. She also wants to do a CAC test on me.
It’s just so damn hard to accept the fact that I’m never going to get better and that I’m just not meant to live life anymore, but simply to be alive. It’s a sad realization that’s been slowly setting in, and like I said, I don’t think I can just say, “Oh, well, that’s just life and what’s meant for me,” and just live with it. Almost every day is a struggle. I feel horribly fatigued, even just sitting in a chair. I’m really afraid Tom’s wrong this time, and I’m never going to get better. My life is basically over, no matter how long I stay alive. No more vacations if we ever had money, and definitely no moving. There’s no way I could handle a move. Those adventures are definitely a thing of the past. I don’t like a lot of things about Florida, but hey, at least it’s warm most of the year and it’s more affordable.
I had a couple of different AI models create an editing tool code for me to use on Blogger. Tom’s going to go through it, but I don’t think I’ll be using Blogger regularly anymore. I may make large monthly posts there, and that’s it. I still say they’re preparing to phase out the blogs. Why else would you do something so crazy?
Upon waking up today…
Feeling exhausted and totally hopeless. Sleep was a little fragmented because I took Zyrtec and ibuprofen before bed. Also, I didn’t get enough REM sleep last night, and the night before, I didn’t get enough deep sleep. Not getting enough REM last night may be partly my fault, because I drank wine before bed.
Still, I feel like I have a huge life sentence hanging over my head, and it’s a really tough pill to swallow. I just can’t accept feeling like this for the rest of my life.
6/25/25
Last night…
Blueberry wine is a great thing, but I have to put the rest away because it’s too close to my bedtime.
Both of us have rashes now. The weird thing is that his is not on his feet, but on his lower legs, and he didn’t get it until after we bombed. The tops of my feet started itching again last night, but so far I haven’t had as much itching today. They both felt kind of swollen, too—like the skin was too tight, even though it wasn’t. I got some antifungal cream on the way in case it’s that. It would be good to have in the house anyway.
The full-face mask is being returned. It’s absolutely horrible! I honestly don’t see how anyone can sleep with one of these things. It was like getting punched in the face by an invisible fist of air, and I felt like my lungs would explode. I thought that being able to handle the hybrid—leaky or not—that I’d be able to handle a full face, but no way. I am finally adapting, little by little, to keeping air from escaping my mouth, so it comes down to either the cradle or the one with prongs. Tonight I’m going to try the cradle, which is connected to a more comfortable harness with the top hose and quick-release. So what if I get woken up every now and then? I sleep so shitty most of the time anyway, and even when I don’t, I’m usually tired no matter what, so what difference does it make?
This afternoon…
Found a way to get around the editing issue on Blogger, so Blogger will go back to being updated daily, along with PB, while Tumblr and LJ will be updated every five days or so.
Ran out to Burger King a little while ago because we went to drop off the full-face mask at the UPS Store since I knew right away I wanted to return it. Slept the entire night with the cradle with no major issues. I love having the hose up top. The harness is slightly more noticeable when I lie on my side, but nothing too bad.
What’s bad is my fatigue, and knowing that the CPAP is just going to keep me from suffocating awake and feeling winded all day. Before I even got out of bed, I could feel the fatigue. Facing the rest of my life with chronic fatigue is utterly and totally overwhelming as hell. It’s as horrible as being in an accident and then being told you’ll never walk again. Yes, there are worse things like being blind, but this is pretty damn bad enough. It’s like a car that can never have enough gas or charge to function.
I don’t think Tom is ready to admit that this is what I have. But I highly doubt Rhonda and I are wrong. I get it, though—even I didn’t want to admit it at first. But then I realized that the symptoms were too overwhelming to deny, and trying to deny what it was wouldn’t change anything. Believing it is simple. It’s accepting it that’s hard. I don’t know that I’ll ever be able to accept that, yes, this is truly the one thing we can never fix. We could fix or at least find ways to treat and manage every other condition I’ve ever had, but not this one. And I can’t simply ignore it like I can my high cholesterol. It’s an overwhelming and heavy fatigue that no one in their right mind could deny or ignore, as much as it would be wonderful if they could. I will never again be able to travel or do the things I used to do. And like I said, that’s tough. It’s really, really tough. Like being in a coma for the rest of your life, but still alive. So it’s like I’m never quite dead until I actually am, and I’m thinking the best time for that will be the end of the year. Then no one can say I didn’t give the CPAP more than ample time. I’ve asked myself whether or not I think I can live like this for the rest of Tom’s life, and the answer is a flat-out no. It would be hard, but I could do it for another year or two. But 15 or more years? No fucking way.
Besides, I shouldn’t have to. It should be the law everywhere that if someone is trapped in a hopeless situation that can never be helped or fixed in any way, they should be able to be put to sleep forever. Instead, if that’s the route I choose to go, it’s going to be up to me to do it alone and do it right. Tom is never going to help or support me on that. He’s always going to encourage me to live no matter how much I suffer, and I don’t think he can ever get just how much that is.
I slept for over 7 hours, and my sleep was a bit fragmented. Air leaked out of my mouth a couple of times, so I just slapped some tape on it and then I was okay, but I did wake up a handful of times along the way. I snorted once or twice, which I was a little dismayed to learn I could do even with all this air blowing up my nose. So if that gets to be a regular issue, I’ll go back to the other nasal pillow.
Anyway, I can never get my thyroid under control without becoming anxious, I can never get my energy back, and I can never get the extra weight off. I’m just tired of feeling both helpless and hopeless, not to mention horribly overwhelmed.
As I said before—I really hope there is no God, because if there is, He’s a real fucker for letting this happen. What’s that about Him supposedly helping those who try to help themselves and not giving us more than we can handle? Well, it’s bullshit. I’ve got a huge and heavy load thrown on my shoulders that I can’t live with for the rest of my life. I’m just way too exhausted way too much of the time. I even napped not long after I got up, and it did me no good. I want to nap again, too.
Having issues with the fucking insurance company getting the Doxepin. Tom did a little research, and I guess the 6 mg dose is too expensive, so if they override Rhonda’s orders and decide they won’t pay for it, I’ll message Rhonda and see if 10 mg will be enough to achieve the same goal. Hopefully, they’ll give me “permission” to try that, although I’d be willing to bet I’m not going to be able to handle the side effects either way. Again, pretty hard to help myself when you’re faced with debilitating side effects no one in their right mind could live with, and that don’t go away with time.
Not sure the Doxepin would matter if I’m just going to be tired anyway. And besides, we’re having such a stormy summer this time around that any time I sleep during the day, I’m going to get woken up for the next few months.
Decided not to get a haunted doll because I’m having serious doubts again. I can’t explain why Jade was so active for a while any more than I can explain the pendulum swinging in Melanie’s videos in ways no human could make it swing, but Jade hasn’t been active hardly at all. If anything, the last time I tested, I got a little more of a reaction from Joy than Jade.
Another thing that makes me think it’s mostly wishful thinking or a hoax is the stick figure thing. There’s an app that shows stick figures if something is haunted. One of the haunted dolls for sale had a video clip showing this thing vibrating and overlaying the doll. I downloaded the app to see if there would be a stick figure overlaying Jade, and not only was one on her, but on every single doll in the room, along with my own reflection in the mirror, and I’m certainly no ghost!
6/26/25
Slept okay, but still have fatigue. Part of that may be because I took a full clonazepam before bed. I might have had one or two air leaks, but nothing major.
I thought I would have to be outside 10 to 15 minutes every day to get sufficient sunlight. But I read that as a fair-skinned person, just a few times a week for less than 10 minutes should be sufficient, especially if I go midday. Given my rolling schedule, I can’t always do that, but I’ll make a point to get what I can. It helps my mood as well.
“Nothing lasts forever.” “Things change.” I hear these things over and over again throughout my life, and it’s true for the most part. But then not everything does change, and yes, there are some things that do last forever. Some people get in bad accidents that leave them forever paralyzed. Others get diseases that ultimately kill them. I wish I had Tom’s confidence where my fatigue is concerned, but I don’t. I just don’t see myself getting better at this point. I am, however, doing everything I can think of to possibly help myself. I’m going to make a point of lowering my carbs and making sure I get the proper vitamins and minerals. I could be low on zinc, which is commonly found in things like pumpkin and sunflower seeds. So I’ll make sure I grab some of those in our next Walmart order.
Today’s storm is rolling in, and God help me when I get back on nights! If we’re gonna have this shit every single day, I’m definitely gonna be screwed. But if I’m gonna be exhausted anyway, I don’t know that it makes much difference.
Anyway, CoQ10 is another thing that helps metabolism, but it could also increase the effects of my thyroid medication, and I definitely wouldn’t want it working hard enough to give me palpitations and other side effects.
Since my health is up to my insurance company, they decided that if I want the 6 milligrams of Doxepin, we have to pay $215 for it. For some reason, it’s more expensive to make them in tablets than in capsule form, and they make 6s in tablets. So I asked Rhonda if 10 milligrams would achieve the same goal, and she called that in for me, so I guess it might if I can stand the side effects.
My feet have gotten better, so it was almost certainly those little black bugs—whatever the fuckers were—and not fungus. So I just wasted money getting fungal cream.
The Crystal Lair golf course came out and it sucks. The graphics are beautiful, but I don’t like the course at all.
Also, I made it to Serbia with just under 700 miles to go.
6/27/25
Another day of fatigue, although there was more early in my day than later.
I decided to ask in the park group if anyone else had chronic fatigue and how they’ve managed it. One person said they’ve had it for 21 years and that yes, it does suck the life out of you just like I said. They said some days they’re fine and other days all they want to do is lie in bed. I can’t imagine living with this for 21 years! I’m on year 5 and it’s killing me. No way I’m doing this another 15 to 20. Just no fucking way. I’m not even going to try to bullshit myself by saying that if they can do it, I can do it because I’m not them. I’m not going to let myself suffer for the rest of my life, and I shouldn’t have to.
If I’m not meant to get better, then I don’t want to fight it, and I don’t want to live with it either. I just want to end my suffering. While I’m at it, given the off chance there may be something that deliberately cursed me with these health issues, it’s my way of fighting back and saying: you cursed me, but I refused to live with it. I’m seriously, seriously considering ending it at the end of the year. I’m fed up. I’ve had more than I can handle and I just can’t keep doing this year after year.
The CPAP isn’t going to do anything more for me than it already has. All it’s going to do is keep me from having breathing issues in my sleep. It’s not going to restore my energy, and neither would getting my TSH in range or close to it. The bulk of my problem all along has been the chronic fatigue. They’re not entirely sure what causes it, but they suspect it’s connected to infections as well as autoimmune diseases.
I’m not surprised. I had a feeling all along that I wasn’t meant to beat this and that it was designed to make me suffer. I don’t know what or why anything could hate me this much to inflict so many years of suffering on me, but I’m definitely ready to put an end to it, whether it’s by design or happenstance. I’ve simply had enough. I just have to hope that those who say you go to hell if you kill yourself only say that to scare people. That would be one hell of an uncompassionate God—to send someone to hell because they chose to end their suffering. But I realize that one of five things is likely the case after we die: we either go to heaven, we go to hell, we float about the Earth and maybe haunt dolls or whatever, we’re reincarnated, or we’re totally dead, locked in eternal oblivion. I sure hope the last one is the case. I would say that even if I lived another 50 years.
Another woman said she takes a weekly prescription of kick-ass vitamin D like what Tom was taking. I first thought, well, maybe that’s what I need to do, but Tom said that it’s dangerous to take that for more than a few months because you can get kidney stones. Besides, if there was something I could simply do about it, Rhonda would have told me or I’d have read about it. I do wonder about a thyroidectomy even though I have my doubts about that too. I’ll ask Rhonda when we have our virtual meeting. The only things worse than what I’ve got would be being blind or paralyzed.
I’m going to begin cutting carbs tomorrow, but I have my doubts that it will help my energy, because again, if there was a remedy for this, I would have known about it and been following it a long time ago.
Despite the fatigue, I was able to run out to Walgreens with Tom today and pick up the 10 mg of Doxepin. I’m not going to take it until I’m staying up late enough that he gets up before I crash, so a couple of days or so. With my medication phobia, I’m always nervous about taking something new unless he’s up and about. While we were there, I grabbed a couple of flavored wines I wanted to try because you can’t drink on Doxepin. Even if I have side effects I can’t handle and I have to stop the medication, I still want to back off of the alcohol as part of cutting carbs even if it doesn’t have many in it.
Now for more bad news, since I don’t seem to have much good going on these days. Last night, as I was falling asleep, the back of my foot started itching and I reached down to scratch it. That’s when I felt the little bump and knew that what I read was correct after all. Bombing wasn’t enough to kill the little fuckers that we suspect are sand fleas. They’re so small that they can burrow deep into the carpet until the storm is over. When I got up, I inspected my feet, and sure enough, there was a spattering of fresh bites. Suspecting most of them are in the master bedroom, he put that powder down that we used to kill the carpenter ants we had in the kitchen. He also put it in the master bath and living room, and tomorrow he’ll do the kitchen.
6/28/25 (Tom’s 68)
Happy 68th birthday to my wonderful husband! The birthday boy is now enjoying a good meal and watching his show.
I have decent energy today, but I’m now smart enough to know that it’s not connected to the CPAP. It’s just one of those temporary reprieves I get every now and then. Better energy means a better mood. So I won’t want to kill myself as much today. LOL.
He’s been using electrolyte drink mixes before donating, but because he won’t be able to donate for a few weeks due to his surgery on Monday, he hasn’t had any lately. I took a leftover packet to try on my fatigue, but since I actually have some energy today, I’ll hold off and try it tomorrow. The maca was worthless. Trying to sleep over the next week is going to be pure hell on me—chronic fatigue or not—because of all the storms. A storm is rolling in right now, but when I’m awake, I love listening to them.
Last night, as the bugs were biting my feet in the kitchen, I started to think—these aren’t sand fleas. So I did some research and thought they were biting midges. That’s when I noticed the little black specks sitting on top of his medicine bottle and around the windowsill by the sink. I started to suspect they were connected to the succulents sitting on the sill, even though I didn’t see anything in their soil.
I left Tom a message about it since I crashed before he got up. When he got up, he used a magnifier and took a picture of the top of his medicine bottle to identify the fuckers. That’s when he discovered our problem was booklice. They don’t bite, but if you’re allergic to them, they can cause a red, itchy rash that looks like bites. Their name is misleading because they don’t eat books and they’re not lice; they just look similar and eat mold. They’re not dangerous, just annoying.
That would explain why they were attacking my feet and not his—because I’m allergic. Leave it to me to be the one who’s allergic! He thinks it was the bombs that caused the rash on his legs, which never itched. The bombs killed whatever was alive, but not their eggs. Our guess is they came from the soil we used for the succulents (or the plants themselves). We moved all the succulents as well as the money tree out to the lanai. I never want another indoor plant again other than bamboos, which I’ve never had a problem with.
6/29/25
Ugh, where do I begin? Well, let’s just start with the fact that I didn’t get thundered awake but I had delayed and fragmented sleep. I was up a little over 18 hours and woke up more than I have been lately. I’m holding off on starting the Doxepin until probably Tuesday, after Tom’s surgery and when he’ll be up before I crash. Yeah, it’s called PTSD-induced phobia.
One of the times I woke up, I knocked the fucking hose off the headgear. I’ve been using that harness where the hose is on top of the head and connects with a magnet. I whacked it against the headboard shelf and it got caught on my bun and popped off. So I ended up sleeping the last couple of hours without the CPAP, and that just made things worse. I was snorting and gasping and didn’t even have the energy to throw in my nasal dilator. I like the hose-on-top setup, but the other harness was definitely more comfortable. Harness. That always sounded funny to me. Makes me think of what horses wear. I just want a fucking mouthguard!
Tom is in bed, looking forward to cataract surgery in the morning. For the first time in the 30+ years I’ve known him, I’m actually envious. He gets to have a procedure that will help him tremendously. Meanwhile, there’s no procedure that could ever restore my energy.
I tried an electrolyte drink not long after I got up, but it didn’t help at all. I think those might only work when I start the day with halfway decent energy, then feel it waning. Not when I wake up utterly exhausted. It’s only going to get worse, too, because the storms are gonna be picking up, and even without them, I’m going to be worried about Tom. I know it’s not like he’s having open heart surgery, but still.
It just occurred to me that even though my sleep was delayed and fraggy, I don’t remember any leaks. The only thing that might help my overall energy levels would be to consistently get sleep without being up for 18 hours or more, and with little to no frags. I think I started feeling better yesterday because I had three fairly decent sleeps in a row. The problem is that as soon as I get on track, I get kicked back. Can’t control the storms, but I think that if I could find something I could tolerate and that I could take long-term that would knock me out when I started having trouble falling asleep, and that would help defrag me, that’d be my only hope of improvement.
But how do I do that??? I’d take Doxepin for life if it would help and I wouldn’t have bad side effects. But until and if I see otherwise, I can’t believe I’m going to have any luck with it or ever find anything else that’d help. If my sleep really is cursed, then whatever’s cursing it is going to make sure nothing helps.
Really glad I’m not in touch with Andy now. I miss him every day and hope he’s doing well, but he would be so uncompassionate, unempathetic, and non-understanding when it came to something like CF. I know him. He would say there was no such thing, and that everybody’s tired, and that I was just an “excuse queen,” blah, blah, blah. You know, the stuff real friends simply don’t say. Then he would tell me it was just his “opinion” when in reality, there’s a difference between an opinion and a fact.
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