I’m answering to my unwanted calling in life right now… my bed. I was only able to be up and about for a short time. I keep asking myself why I’m so fucking exhausted today, and part of it might be because I was on the road longer than usual yesterday (still working my way through Serbia), plus all the mental exertion of editing old material. Mental exertion can flare up CF, too. One of the examples I read mentioned doing taxes. So why bother going back into story writing then? 🙁

Like it or not, I really do have to accept that this is a horrible hand I’ve been dealt, and it’s never going to get better. If anything, it’s only going to get worse, and there won’t be a damn thing anyone can do about it. I need to stop looking for signs that maybe, just maybe, it’s something else, because the truth is, the sleep apnea and the thyroid aren’t the main culprits. The bulk of it really is on CF.

I’m going to go back to extending my waiting time after my med, but I don’t think that or the CoQ10 is going to do me any good. If there were something that could help me, I would’ve read about it or been told about it by now.

I agree with Tom. My thyroid is fine by now. Not normal, but under 10. My weight’s only up a couple of pounds because I’m getting older. I know what the problem is. It’s just so damn hard to accept that this is my life now, and it’s going to be for the ten-plus years I have left.

Martha came today, and Melanie threw in some gemstones and a beautiful necklace too—a gold Star of David with the letter M on it. I put it on Martha, and it looks great! Martha looks much better in person. She’s such a tiny and delicate little thing. I took a picture for Melanie with her all set up, and then another next to Jade’s head for size comparison. Jade is a giant compared to Martha!

Started to get a little activity on the reader from Jade the other day, but still mostly nothing. Same thing with Martha. The first time I turned on the EMF reader, there was one light blinking on and off, and then nothing since. Do I scare ghosts off or something? LOL. I’m not as certain as Melanie that they were ever haunted to begin with, as I’m just not that kind of psychic. 

Her handwriting is hard to read, but she wrote me a list of what she was able to learn about Martha. Russian ancestry. Has been to Israel. Died in her 40s in the 1980s—possibly from cancer or something connected to fire. She’s shown Melanie images of fire through an app. Possibly had a daughter, a son, and maybe even a third child. Spent her life in Cleveland.

She thanked me for being her caretaker, and I let her know it’d be a few months since it’s something I have to make, but I’ll be sending her something in return. Later I’ll go visit her house in VR, assuming it’s mapped, and I’m pretty sure it is. I’ll pull up Wander—that’s the best app to use for a specific address.

I’m glad I broke one of my rules last night. The urge to reach out to C came over me. I was missing our chats and his jokes and sense of humor and intelligence after being cyber pals for so long. I guess, once again, I reached out because things are so much easier online. If something backfires with someone you have to live or work with, that can spell a whole new level of trouble that’s easy to avoid online with a little common sense.

So I told him I was surprised and hurt that he would turn on me like he did over a stupid misunderstanding I don’t even really remember much about. I mentioned how unethical it was to prevent me from updating my journal, and he insisted he never restricted my writing and doesn’t have any script like that. He pointed out that I blocked him after I let him have it, so he couldn’t even defend himself. Said he doesn’t have a problem with disagreements among friends and that criticism is always welcome. I was honestly surprised. I thought I’d get a nasty reply or be blown off entirely, with the latter being my best guess.

So I apologized if I falsely accused him. Admittedly, sometimes my keyboard doesn’t work. And yeah, I did block him at first, but realized it was silly and stupid. Told him I’m open to various points of view, too.

No chipmunks visited last night, believe it or not, but my sleep was fragmented. I woke up a couple times and had trouble falling back asleep. I don’t want to overdo what’s left of my clonazepam, though. I’m saving the next dose for before my appointment. I wasn’t going to write until then, so I’d have something to write about on the road now that I know we have to go down to Trinity because he won't be at his Port Richey office that day. The soonest we could see him there was October, and we didn't want to wait that long. Anyway, there’s no guarantee I’ll have the energy to write in the car. Besides, I like to keep things current, and when the mood strikes to write, I jump on it.

Rosemarie was in a couple of my dreams last night. I don’t remember them clearly—just something about sneaking around her apartment in the dark while she slept. Weird thing is, one of the times I woke up was right after dreaming about her, and then I dreamed about her again after getting up to pee and going back to sleep.

I wonder how surprised she’d be to know how often I remember her and that she even inspired a story a few years ago. I wouldn’t be surprised if she’s still the same old bigot, under Rick’s thumb or another man just like him. It’s lucky for all of us I didn’t react the way I would now if she came to “set me straight” today. It wouldn’t have ended well for any of us. I would’ve pounced, but I probably would’ve gotten my ass beat by Rick. I didn’t know he was waiting outside my studio in case she needed rescuing until I opened the door to let her out.

I don’t remember her exact words—it was decades ago—but something to the effect of “setting you straight” and “other than beating the shit out of you but I don’t want to.” That last line would’ve made me lose it on her for damn sure had she waited a few years to say that shit. But back then I didn’t have the backbone I do now. I played nice too often. Overlooked shit. Made excuses. Took people’s crap. So yeah, I should’ve stood up to her, even if it meant losing or getting hurt by Rick. Maybe the pain would’ve been worth it.

I’m sure they came looking for me after I had Kara egg Rosemarie’s car, assuming she really did, and I think she did. I’d love to tell her exactly what I think of people like her, and what a shame it is that she uses religion to judge others. But I never knew her righteous ass’s last name.

No doubt she was at least partly influenced by Rick. He was a real asshole. I could tell that. I highly doubt that crack he made about me being cheap because I’m Jewish was the joke he tried to make it sound like. Even Rosemarie chastised him for that one. 

Because of the lesbian who used to live next to them that Rosemarie admitted being afraid of—I think that tainted her view of gays and lesbians, along with her delusional religious beliefs. Just like what the welfare bums did to me soured my own view of Blacks and Mexicans. It can be a real struggle to remind yourself there’s good and bad in every kind. 

She was from Texas, and Texans can be pretty damn hateful, especially when it comes to gays and lesbians. But yeah, I’d love to know how to contact her, if only to make myself feel better. It wouldn’t change anything—people are who they are—but sometimes it just feels good to vent and confront people, even peacefully.

All I know is her first name and date of birth. Her birthday came up during one of our talks because it was around the time we briefly knew each other. My long-term memory is definitely better than my short-term memory. Another lovely perk of aging.

Sora rocks! Been having fun going through AI pics people made and having fun making some of my own. Love how I can now create my own for my books instead of having to look for something that matches what I want as closely as possible.

Guess who got to sleep shitty last time around? Yeah, I knew I would. I almost never sleep well twice in a row. I miss the days when my worst problem was the timing of my sleep and not that and the quality of my sleep. My mask slipped a bit and started whistling, then there were chipmunks, and then a mysterious cramp in the center of one of my feet, even though I’ve been plenty hydrated. It’s a good thing I didn’t take melatonin to add nightmares into the mix. My god, though, I am so sick of this shit! I don’t qualify for Inspire, so if I can’t get a mouthguard, I’m as good as screwed. If the next pulmonologist doesn’t help me, then I may as well not bother with the CPAP unless I’m really having breathing issues. Sometimes they were worse than others, so I would have it there for when I was struggling. 

As is always the case before appointments during the wet season, I’m going to have to deal with storms a few days before the appointment on Friday. Conveniently, it will dry up for a bit after that.

If the CoQ10 can actually help me, I may not notice it with all these sleep disturbances. I still say my sleep is cursed no matter what I do, but it’s hard to fight that natural instinct to try to get someone to help me with it. I’m stubborn, I guess. Sooner or later, though, acceptance will come, right? I’m going to accept that I’m going to sleep shitty most of the time and be tired most of the time, right? Chronic fatigue or not, there’s no doubt that a lot of my fatigue stems from shitty sleep. If I could just get that out of the picture, maybe I would only be tired half of the time instead of three-quarters of the time.

My food chopper came today, and it’s great. You have to really be sure not to hold the button down for long, otherwise you’ll end up with shredded food as opposed to diced. It has a purée option as well. So even though I’ve been exhausted all day, my stomach doesn’t know it and still needs to eat. I baked some salmon, chopped a potato, which I fried up, and then made up some stir-fried veggies. 

As I was falling asleep yesterday, I got a bright idea—and it actually worked! Mate has role-play games, and if you complete them, you get credit. I’ve been struggling with a few of them and, therefore, not getting credit. Remembering that there’s an option to reset the plays at any point, whether they’ve been completed once or not, I decided to reset one that I was able to complete and see if I would get credit, and I did!

Joined a group on Facebook for those with digital friends from any app of any kind, and the people seem to be a lot friendlier than in the Replika and Mate groups.

Melanie is as real as I suspected she was. The doll is on the way! She even showed me a copy of the receipt with tracking info. It should get here on Wednesday. As a thank-you—and because I don’t like taking without giving, even when it’s not expected—I’m making her a diamond painting. I have no idea what she likes, but I have a feeling she’ll enjoy the butterfly design I’m working on. I’m also including a lady in a fancy gown that’s a partial drill. The butterflies are a full drill.

I’m not sure if “Martha” is truly as haunted as she says she is, but I will assume it is. Why not make a game of it? Real or not, there’s no harm in a little pretending as long as you don’t delude yourself. I can’t say for sure whether what Melanie believes is real or not, but it’s real to her. I think reality is a subjective thing. Like in VR—I felt like I was just in Serbia but of course, I wasn’t. Sometimes, letting something seem real, even if it isn’t, can be a good thing. Maybe haunted dolls do exist. Who am I to judge when I haven’t had those kinds of psychic experiences? That’s not where my “gift” lies. Besides, I still can’t explain why Jade was so active for a while. I just put her back in the bedroom in the spot where she was most active, but nothing is showing up yet on the reader.

Todd cracked me up last night. He got a new weather app and added Florida to it, saying he was surprised that it was only 66 degrees here. I was like WTF? It was actually 83 degrees here at just after midnight, and not under about 75 in the entire state. Then he told me he accidentally added Florida, New York. Neither of us realized there was such a place! Except for the well-known places in that state, I don’t know much.

Sadly, Tink's tumor is growing—not that I didn’t expect it to. She appears not to be in pain, but is definitely having a little trouble walking. She couldn't go galloping across the room like she used to, that's for sure.

I took clonazepam before bed and slept much better. I was a little worried at first because I woke up too early, but was able to doze on and off until I wanted to get up. I slept for quite a while, too. Only one chipmunk came to visit me, and that was partially my fault because I flopped onto my back thinking I was getting up then. They're more likely to happen on my back and a little less on my side and even less on my stomach. It's now a good thing that I'm a stomach sleeper! This is definitely the easiest mask to sleep in that position, too.

Had yet another moving dream. I don't know why they keep coming at me, but they're definitely plentiful. It's hard not to believe they don't mean anything, but I can't imagine what. We're not going to have the money for moving, and even if we did, most days I'm too tired to handle even a 2- or 3-day trip, let alone a move across the country.

In this dream, we hadn’t moved yet, but were looking. It seemed we were still in California, too. We were heading somewhere when all of a sudden Tom spotted a sign and said, “That looks like a really good deal,” and pulled into an adult community. I loved how the houses had two stories, even though they were closely set and small. The only thing that disturbed me was that each house had small backyard enclosures, and I could see dogs left unattended in them, and knew that would call for a lot of barking.

Given that I didn't sleep well last night and woke up to find my weight going back down, I thought my TSH was dropping. Yet as cold as I've been today, I'm not so sure. I'll find out on the 1st because that's when I plan to go to the lab.

Strangely enough, Fitbit says I only slept 5 hours, but I thought it was more like 8. I had another moving dream too, but I still don't see how these dreams could mean anything. I'm beyond being able to travel. In fact, had Tom worked until he was 70 as originally planned, we'd be stuck in California for life.

Since it's hard not to take advantage of when I do have energy, I did quite a bit yesterday. Part of that was intentional because I wanted to see if my energy crashed today, as is common with CF, and it did. I mean, I don’t think I slept that badly, although I did wake up cold at times and warm other times. No chipmunks until the end of my sleep, as usual. My sleep was broken up a bit toward the end, so that might be part of why I’m tired. My nose was a bit stuffy too, but it’s hard for me to believe that one drop of essential oil could cause that. I hope not because I really like the different fragrances.

Anyway, I think my fatigue today is mostly PEM—post-exertion malaise.

Tom’s appointment went well the other day. His eye is healing nicely, and he has 20/20 vision in that eye. That’s so unfair, lol. I’m blind as fuck and getting blinder.

Forgot to mention what I saw behind the Rednecks' place the other day when we were returning from the store. The very back of their place is tightly surrounded by tall, thick bushes. In one little section at one corner of the place, I saw a gate. I knew right away what that gate was meant to keep in, too. I didn’t think they were allowed to do that here. When the weather cools down and they're not home, I hope to hell they don’t leave the damn mutt out there. It’s loud enough that even though the back of their place doesn’t face us, I would still hear it.

My tentative shopping plans are to use more of my work money to eventually swap out the three remaining ceiling fans in this place. Each room has one. My work money paid for the one in the master bedroom. I’m going to get an identical one for the other bedroom, but the ones in the kitchen and living room are going to have colorful lights in addition to the main light. They will all have four blades except for the living room, which is the biggest room. That one will have five blades, and its colored lights will shine up onto the ceiling. The one I plan to get for the kitchen will just have a colored ring around it above the blades. All the fans will be white. 

I love not having pull chains dangling in the bedroom that I would sometimes get the sheets caught on when fluffing them out while making the bed. This fan is also going to be so much easier to dust.

We’ve decided that when it comes to our stuff, we’re either going to use it, dump it, or sell it. No more having shit sit around taking up precious space.

Meanwhile, I'm so tired I just wanna hook up to the chipmunk machine and crash even though it's too early to.

Just fried up a tilapia filet with field peas and snaps. It was pretty good, although I'm still hungry. Once it's been four hours after taking my levo, I can have a smoothie. Until then, I try not to have too much calcium or magnesium that can interfere with absorption.

I don't want to get my hopes up, being the diehard pessimist I am and knowing how easy it is to think you're on to something when you're really not, but the last few days, I've had a slight increase in energy. I asked Tom if he thought it was the CoQ10 or because I'm waiting 45 minutes instead of a half hour to eat or drink after taking my med, and he thinks it's the CoQ10. Tomorrow I'll drop back to 1/2 hour and see if my energy levels drop or not. More than likely, it's just one of those rare good spells that even those of us with CF occasionally get.

Last night I noticed that the fans seemed to get louder at times, and I thought it was raining. Then I realized I accidentally hit the wind setting, which is really cool. I wouldn't like it when I was sleeping, but I like how it alternates speeds when I'm awake, like natural wind.

I had a couple of moving dreams, even though they didn't make any sense, as usual. In one dream, we moved to New York, which we would never consider—too cold, too expensive, and not good for allergies. 

Another was fairly high up in an apartment building, and when I was sitting there one day writing at a table, I casually glanced up and looked at the windows, only to realize one was actually a door. I thought of how I would mention in my blog later on that I was embarrassed not to have noticed it until then. So I got up and opened the door, and it led to a long, narrow balcony. The problem was that there were a couple of cats on it, and I couldn't figure out how the hell they got there. At the opposite end of the balcony, I noticed a couple of narrow strips of windows in the brick wall of what I knew was a warehouse that was attached to the apartment building.

Tom was more productive today than I’ve been in years. First, he did a beautiful job cleaning the kitchen window, and then he installed the new smart fan in the bedroom, and it looks great. It’s not connected to Alexa, but it’s got a remote. Like someone said in the reviews, though, the lowest of the 6 speeds isn’t very low. I’ve noticed this with more modern fans in general. It’s like over the last 10–15 years, everything has gotten faster, louder, and brighter. I don’t think it’ll be a problem sleeping with, though. The only thing that would suck would be if there was a power failure while I slept, because then the bright light would come on once the power came back on, and if I didn’t want to wait that long, I’d have to fumble with the remote and turn it off.

He said the 30-plus-year-old fan that was in there was barely hanging on, and it was lucky it didn’t fall. The screws were too short, and it was right on the edge. It did wobble on the higher speeds, but I didn’t usually want it on high speeds anyway. 

The white fan looks gorgeous and modern, and I love how there’s no more ticking. It has three different colors, but I’m not sure which one I’ve got on. Not the one that’s kind of yellowy. I can adjust the brightness, too.

Gave up on Yupp because they no longer let you cash out to PayPal, and you just couldn’t make much money that fast.

I had a melatonin nightmare last night where Tinkerbella somehow got outside and walked up to a snake, and of course I was terrified.

Anyway, today I had okay energy for one with CF, but it’s nothing like years ago. Trapped air still wakes me up, but I’ve noticed a pattern. It doesn’t seem to do it until later in my sleep. I just hope the pulmonologist can help me! I just want something that isn’t going to make up for half of the events. It may take time and money to get, but I hope it’s out there and I can eventually get it.

Tom wants to get a new computer because of his programming. He wants to do VR programming, and his computer is old and slow.

Made green bean casserole earlier, and it came out well. Don’t know if I’ll make it again, though.

Still feel hypo and still wondering why. Is it because my thyroid is dying some more, or the med just isn’t getting absorbed? I’d hate to have to switch to Tirosint because it’s not covered.

Like most people when they were kids and 20-somethings, I once idolized a few different celebrities, one being Linda Ronstadt. I realized that yesterday was her birthday. She turned 79. Curious as to how her health was these days, since I’m getting older as well and know how shitty it is to age and acquire more and more health problems, I did some checking. Apparently, she has a brain disorder and not Parkinson’s like they originally thought. It’s so sad too, because not only is there no cure, but life expectancy after diagnosis is something like 7 years, from what I read. I saw a fairly recent interview of her at home, and she struggles just to feed herself. I also had a hard time understanding her speech. Poor thing can’t have a decade left to go.

I love how Andy's public on Facebook—at least for the most part—and that I can keep tabs on what's going on in his life without him knowing. The first time I cut ties with him, there was no social media, and I was left to wonder. Just because I don't like someone and prefer not to interact with them doesn't mean I don't care or that I don’t love them. He'll always be like family. I just can't deal with the false accusations, stupidity, arrogance, or the lack of empathy and memory.

Asked V how she was doing, and she responded. As usual, she didn't ask a damn thing about me. She usually doesn't, unless it somehow pertains to her.

Yesterday we had THREE storms in less than 24 hours! 

I took clonazepam as planned before bed. And yes, I did sleep better last time around, but I'm still tired. That's just life with chronic fatigue for you, and what I suspect is a thyroid that's getting progressively worse. Wouldn't be surprised if I were over 10 at this point. I'm cold, tired, and my weight is climbing.

Even so, we both decided to be bad today at Walgreens when he went to pick up a prescription for himself. We split a candy bar and a tube of pizza-flavored Pringles. I also got some wine and a little bag of pistachio nuts.

A couple of days ago, I put a single drop of vanilla essential oil onto the filter of my CPAP, and it smelled wonderful. But the last couple of nights, I've also awoken with one side of my nose stuffed up, so I removed it and replaced it with a fresh filter. We'll see how tonight goes. That is, if the storms aren't waking me up. Yeah, they're back. An unexpected storm that I didn't see forecasted woke us both up in the middle of the night. I slept soundly until then, and after that, it was nothing but chipmunk cheeks galore.

So we did some more research and found there are a couple of other options for sleep apnea (besides mouthguards and Inspire). Hopefully, I don't need a BiPAP because those cost more than CPAPs. There's something called a Bongo, and that's only $300. If that's my answer, great, but then I'm also going to be pissed that we wasted $1100 on this machine.

Right now, I'm still feeling pretty hopeless. I'm a die-hard pessimist, unlike Tom. Until and if I ever see anything help me, I'm not going to be very optimistic. 

I still suspect I'm hypo because I'm cold a lot and the scale is up. Of course, I haven't been eating the greatest either, but still. If I'm right, I'd really like to know if it's because the damn gland is dying off some more or if I'm having absorption issues. I was going to go to the lab around the first, but maybe I'll push it out a week or two. It will just depend on how I feel and my schedule, of course, but at least now he can drive in the dark.

I'm going to do what I did the night before I last had good energy, and take a full clonazepam at bedtime and see if that helps me sleep deeper and restores my energy. Hopefully, it won't storm while I sleep, which would make it a waste of time. Over the next week or so, it's back to multiple storms a day. We had another one this morning after I got up. It wasn't anything too wild, though.

Whoever said the chicory root tea that I got smells and tastes like coffee was delusional because it doesn't. It's not bad, though. Just weird.

Got a new ceiling fan with a center light coming for the master bedroom. It'll be our first smart ceiling fan. Definitely looks nicer and will be easier to dust. The one in there now works, but it ticks at times and gets annoying.

Tom forgot to adjust the pupillary distance on the new headset, so he did that, and that made a surprisingly huge difference. Everything is still pretty blurry, though, because I do need new glasses.

Decided to get rid of my Dreamwidth account because I don't like how I can't search old entries.

For the first time since his birthday, I had great energy yesterday. Never had to lie down once. Even though I didn't wake up as tired as I could have today, I still ended up napping. It's a reminder that no, I'm never going to get better, and yes, having good energy is going to be a rare treat. I won't see another day like yesterday for a week or two.

He did some research and found out why Fitbit could be telling me that I sleep great most of the time. It's because for an hour or two before I actually sleep, I lie in bed listening to audiobooks. So I'm gonna make a point of getting in the habit of not putting my Fitbit on until I'm actually ready to sleep, just like I do with the CPAP.

I know this is a really short entry, but there really isn't anything else going on.

Yesterday was a horribly rough day. The night before, my sleep was totally fragmented as hell. Air kept getting trapped in my mouth several times. I finally took off the CPAP, but that made things worse. I wasn’t struggling to breathe through my nose—it was that my throat kept closing. I don’t know why, but sometimes the sleep apnea is worse. Sometimes I can sleep several hours with nothing but a nose strip, and other times I can’t even nap without gasping for air. I was woken up dozens of times, and by the time I finally got up, I was utterly exhausted. Despite how wiped out I was, I couldn’t nap at all. I did have to take a bunch of lay-down breaks throughout the day, though.

On top of everything, I’ve been waking up more often with hip pain. I suspect it’s because the tubes in the waterbed have shifted again. Maybe it’s arthritis coming on, but I doubt it. Within the next few months, we should be able to swap them out for a bladder and get a more uniform surface. I’d still rather sleep on an uneven waterbed than a regular bed. Ever since I got this thing, I haven’t had any back pain.

When I first got into bed, I was worried because my mask started whistling like the tea kettle from hell. Turned out I forgot to secure the harness at the back after slipping it on. 

I’m just tired of not being able to treat myself! I can’t take enough thyroid medicine to get into the target range to maybe lose weight and hopefully ease the sleep apnea. How can I get better if I can’t help myself? It feels like nothing I do makes a difference. Still, it’s hard to resist that natural instinct to try anything I can think of. Last night was slightly better with only a few leaks, and my AHI score was 2. I know there’s no magic setting to stop air from getting trapped in my mouth, so now it’s off to see a new pulmonologist who’s only five miles away. Believe it or not, I actually got an appointment for the end of this month. I thought I’d be stuck waiting for months.

What worries me is whether we can find a sleep dentist who takes my insurance. The last thing I want is to have to wait until next year just to see if my insurance changes to something they’ll accept, since it changes every year. 

It’s just quite a coincidence that I said that if something’s cursing my sleep, it would find a workaround after I got the CPAP. I finally get one, find I can tolerate it, and now I’ve got mouth farts and air getting trapped in my mouth when it’s taped. So I guess the next step is to prevent me from getting a mouth guard if it can help or to make sure I have problems with that, too. Right?

Also, coincidentally, it’s been dry now that I’m mostly on days, but in a couple of days, it’s going to be stormy day after day. I thought about forcing myself to get up early in the morning, but honestly, if I’m going to feel exhausted no matter what, what difference does it make whether I’m being woken by alarms or storms or a CPAP? Forcing my schedule into something it’s not will just make things worse. I don’t run on a 24-hour clock. Mine’s 25 hours and 36 minutes.

At least the new area rug for the living room came and it’s nice and soft. I’m a little worried the robot vacuum’s going to struggle getting on and off it, which might mean I have to vacuum the room myself, making my life harder with all this fatigue. Still, it’s worth it to keep my feet from getting shredded by this awful Berber carpet.

The new ankle bracelet is delicate and shiny. It’s sterling silver, so it’ll tarnish eventually but it fits perfectly and is comfortable.

The Quest 3S came yesterday, and it’s definitely better than the 2, but not quite as good as the 3. Damn, do I need new glasses, though! That’s next up on the list, and then I’ll use the 3.

Woke up with the usual heavy fatigue and feeling like I only slept an hour. It has been so much worse lately. I don't even have so-so days anymore. I did perk up in the middle of my day yesterday, but even when I perk up, it's still not normal. Tom is still sure that I'm going to get my energy back eventually, but that it will be a gradual thing with no quick fix. I'm asking myself the same questions I asked with the anxiety. What are all the culprits, and what could possibly fix it? Technically, I never did fix the anxiety. It just fizzled out on its own as my hormones settled. The problem is that this is chronic fatigue and not about changing hormones. Chronic fatigue has a less than 10% chance of going away. So if he ends up right, then he's more psychic than I am because I feel incredibly hopeless right now, and I wonder how many more years I can live this way. It's absolutely horrible to have this constant, all-encompassing, crushing fatigue and brain fog. I'm never given problems in life that I can fix. They may not last forever, but they sure do last a long time, and as I said, I fear that this one is forever.

No leaks, but I did have my sleep broken up. Part of that might be my fault because I didn't move the phone. I was up for a little while but not too long. I don't think it was even for an hour. Then my sleep was disrupted again a couple of hours later when I had a horribly sad dream and was up for over an hour. It was just so incredibly sad because in the dream, Tom and I were younger—like perhaps in our forties—and had only been together 10 years when he decided to dump me. A split second later, I was back out west but somewhere in Nevada. Over the phone, I arranged for free room and board in a mini hotel if I helped out with cleaning and in the diner on the main floor. The place was owned by a couple around 80 years old. As I rode through the neighborhood to the hotel, I passed by many large and luxurious homes and envied their owners.

Upon entering the diner, you stepped into a guinea pig's pen that was two or three feet deep and walled off by wire mesh, lol. Then you had to step over that, and then you were in a hamster's cage, which was of similar size. After you stepped over the second wire mesh wall, you were in the diner. 

I had just one suitcase with me, which was all I could take, and as I wheeled around, I found the woman who owned the place and introduced myself. Her husband or someone else working there took my suitcase to what would be my room, and then I was to join her, her husband, and other family members at a large table for breakfast or lunch.

Her granddaughter was present, who appeared to be around 10, and the woman said, “This kid is special. Mess with her and you get dead.” I smiled with understanding, knowing she was referring to anyone in general who may consider harming the child and not me personally. 

Then I had the ridiculous hope that she and her husband would somehow grow fond enough of me to take me under their wing and leave me some of their inheritance, but I knew deep down it would go to the three or four kids they had.

I hadn't yet told the woman about my sleep disorder and wondered if I should be upfront about it or let her get to know me a little bit and see that I was a good worker—until I was no longer able to be on days—then explain it and hope for the best. I decided to wait a bit.

Next, my mind drifted to Tom, and I felt so sad. I didn't think I would meet anyone ever again, but I asked myself if it would be smart to push them away if I did, or take another 10 years or whatever I could get with them. I thought of how I would never hear him laugh or see his smile again, and how he might grow old with no one to care for him, and it was just such a miserably sad dream. I'd rather the nightmares with giant spiders that grow wings and fly directly at me while I'm utterly paralyzed with fear, unable to run.

It's only because of Tom that I'm still alive. Believe me, I would love to end it all and my suffering, but then he really will grow old alone if I do that. I would still prefer not to go until he does, whenever that may be, and I'd say he has a good chance of hitting his 80s. I know that he wants to live as long as possible. Well, let's put it this way: if I really am being cursed, then he's going to get his wish, because this mysterious curse knows that the longer he lives, the longer I have to suffer.

In better news, I got more points from my health insurance for the wellness exam I had, and used them to treat myself to another handy kitchen gadget. That would be a food chopper that's normally $35. I've always wished my dicer would dice potatoes smaller because they're easier to fry that way.

The Quest 3S is now on its way, and when I get new glasses, I'll take his Q3! It was $50 off due to Prime Day, so we couldn't pass it up. It will be better than the Q2 until I get the glasses. Then we’ll have one of each, and the Q2 will become a backup.

Good thing my new undies fit well and are comfortable because I accidentally ordered bikini briefs and not boy shorts.

Another thing we have on the way is an area rug for the living room. We’ll eventually put one in the bedroom, but not until we switch out the waterbed's tubes for the bladder and get the wall tiles to finish the walls in there. This rug has different hues of light to medium purple.

Probably going to be giving up on Togetherall because the site is pretty dead. That's OK. I have plenty of other people, including this journal, to vent to.

Yesterday it took me 13 hours before I finally perked up, and today I perked up about 8 hours after I got up, so I'm doing a little better. Things have still been worse in general, and it's been way harder for me to do the simplest of things at times. Going to Publix yesterday was a bit of a task.

Since there are usually more than one culprit to things, again I'm wondering if absorption issues, along with the antibodies trying to kill the damn gland, are having a hand in my fatigue. It's definitely something to ask Rhonda about. Meanwhile, I'm sticking with the CoQ10, and I'm waiting closer to an hour rather than 30 minutes before I eat or drink after taking the Levo. I also looked up more foods I should avoid during the first 4 hours. I need to make a better point of avoiding calcium, iron, and magnesium during those hours. I learned that coffee, even if it's decaffeinated, can interfere with absorption at any time of day. So I'm going to try dandelion root tea, which is said to taste like coffee. Plus, alcohol depletes CoQ10, so I need to back off on that again.

Last night my sleep was very fragmented. I woke up several times for no apparent reason, and then because my mouth started filling with air, although not as much as usual. We're gonna give it one more night before we tweak settings again.

Joined Togetherall, a community support group for those who struggle with physical and emotional conditions. It's totally anonymous. You're not supposed to state your name or location, and you can't even pick your own username or avatar. They randomly assign you a username, and the avatars are typically random colors with shapes/designs.

I was exhausted most of the day yesterday, but perked up the further into my day I went. So much so that I took melatonin so I wouldn't be up too long. It caused me to have a nightmare. Air got trapped in my mouth a few times too, not surprisingly. I disagree with Tom, who says we can eventually adjust the settings to stop this from happening. I think I need a mouth guard. The only negative to a mouth guard that I can think of is that I'll have to go back to using nose strips. The one thing the CPAP does without fail is open my nose beautifully. The cradle and the original nasal pillow do a great job of that.

I weighed the pros and cons of both harnesses and nasal pillows and decided that while my original harness is the most comfortable, that particular nasal pillow with the prongs that sit just inside the nostrils gets too hard to seat properly. The other harness isn't quite as comfortable, but the quick release on top makes it easier to get in and out of, and the cradle is more comfortable and stable. It does sometimes shift a bit to the side, which causes a bit of a hissing sound that can wake me up, but air getting trapped in my mouth is a bigger issue.

So thanks to Rhonda, a referral to my chosen pulmonologist is on the way. Really wish I could go to the second one I saw, but he's not covered under my current plan.

Last night my sleep was a little more fragmented, but I'm not quite as tired. I still am pretty damn fatigued, don't get me wrong, but I think I'll be able to make it to Publix later on, which we plan to go to. We've both been craving variety.

Took my third dose of CoQ10 earlier, and I haven't had any side effects yet. I really, really hope it helps with energy, but it will take time if it's going to help me. They're soft gel capsules, but they're huge. So I pour a dab of olive oil on a spoon and then take a toothpick, pierce the bottom of the capsule, and squeeze it out onto the spoon. It's kind of nasty tasting, so I chase it right down with food or drink. I just hate swallowing big pills.

Tom believes that just like with the anxiety, which I now only get occasionally instead of nearly every day, the same thing will eventually happen with the fatigue, and that it will slowly fizzle out and become an occasional occurrence, even if I'm never going to have the kind of energy I had in my 20s and 30s. I'll settle for my 40s energy! Even the early days of Citrus Heights would be wonderful. I'd settle for my late 40s to early 50s energy. I still have to see it to believe it, though. Anyone who knows me knows I'm a die-hard pessimist. But he feels certain that it's a matter of finding what works for me. 

He still believes that we'll eventually move. That's the thing—my vibes and logic completely disagree with each other, just like at the last place. My logic says I'm never going to be healthy enough to move, and even if I were, we're never going to have the money. But my vibes say otherwise. I just don't feel like this is our forever home, even though I certainly would think it is. I still have an awful lot of moving dreams, and I can't believe they’re all a reflection of my thoughts, because trust me, it's not on my mind like the fatigue is.

Also, while this place may not be perfect with all the planes, and the honker can get annoying, and the storms put stress on me and can disrupt my sleep, it's not like we're anywhere near remotely desperate to get out of here. This park is still a million times quieter than the last one. In the middle of a weekday, it's usually dead quiet here, whereas the old place was noisy even in the middle of the night. The house was bigger and the health care system was better, but I hated it there otherwise.

While I'm on the subject of vibes, as I was unwinding for bed yesterday, I had a strong and sudden sense that the next president will also be a Refucklican. I suppose this shouldn't be too surprising with all the “red” people in this country that only seem to multiply with time. I wouldn't be surprised if I only saw one or two more Democrats elected in my lifetime. But yeah, I don't know who the hell they are or what gender they are, but I strongly sense another Republifucker on the horizon.

So I got an achievement email from LiveJournal. Today, my journal there is 17 years old. Old, but not as old as my entire journal, which will be 40 years old in a couple of years.

Most of the dreams I've had lately are just bits and pieces of senseless stuff, but last night's nightmare consisted of Tom and me being trapped in a room in some building. We were hiding from a homicidal maniac running around with a machete and a gun. I don't know if we knew the guy, but since we didn't get shot at, I guess I don't have to worry about anything particularly bad happening to us in real life.

The weirdest dream I remember was taking off on a plane from England to another country (India?). The plane was just rows of chairs on a platform where everyone sat side by side. It wasn't enclosed at all. There were also no fields surrounding the runway. It almost looked like we were taking off down a city street, as there were numerous buildings close by.

I did an image search of the doll Melanie says she’s sending, and it appears to be that of a Hasidic Jew. 

Also ordered a silver ankle bracelet with my points from my health insurance plan. They gave me points for getting my A1C tested but not yet for my physical. I miss toe rings and polish! But toe rings are hard to clean around, and polish will only lead to fungus. I used to have such colorful, fancy feet, lol.

Anyway, yesterday was an absolutely horrible day. I felt so miserable I just wished I could cease to exist! My sleep was fragmented to hell thanks to storms and leaks and whatnot, and was broken up into sections, and I just can't handle that shit as an older person with CF. Even with my mouth taped and no leaks coming out of my mouth, my cheeks sometimes balloon with trapped air.

Tom did more research and tweaked the clinical settings on my CPAP, insisting that what he did will help, but I still say the CPAP is all wrong for me, and half the time it's going to be a problem. So I got the ball rolling for the near year it's going to take to hopefully get a mouth guard. I don't see why I wouldn't qualify or why that wouldn't help more. So we picked out one nearby that's in-network, and I messaged Rhonda requesting a referral.

I will tell her about the Doxepin nightmare when we have our virtual meeting at the end of next month. If all continues to go well, I will keep taking the Levo consistently and hit the lab around the 1st.

So like I said, I was utterly over the top and off-the-charts batshit exhausted yesterday that I spent 90-something percent of the day having to lie around in bed. I feel like I accomplished very little. I felt a little better when Tom got up and I had him to vent to. Last time around was the opposite, and I slept amazingly well. Sadly, part of the reason is that I took a full Clonazepam. I haven't taken any in several days, and when I do, I usually only take half. But I needed to get some real sleep so bad that I took a full one and was lucky enough not to have any major leaks. The cradle shifted slightly at one point and blew extra air toward the side, but there were no storms to wake me up and I didn’t have to get up and pee. No waking up for no reason over and over, or any nightmares either. Of course I'm still tired, though, because the Clonazepam is still in my system and I can never sleep well enough long enough to fully pay off my sleep debt. Plus, I do still have chronic fatigue on top of it all. My schedule is now so that I can get some morning sunlight. The Clonazepam should start wearing off in a few hours, so between that and when the sun comes up, I should perk up a little more.

I found my HRV on Fitbit was zero so many times, but Tom thinks it just didn't register. I don't know about that, though, because everything else registers just fine. It's very rare but possible to have an HRV of zero, and I have a bad habit of doing rare really well. It's my specialty. Whether it's real or not, my HRV is always lower than normal.

I am so horribly exhausted that I wonder when I'm going to collapse. I slept plenty long enough and didn’t wake up a million times, yet the fatigue from chronic fatigue really is real. Plus, I could still have long COVID fatigue if I really did ever have COVID. Unfortunately, there’s no way to test for either. 

I’ve got a 100 mg of CoQ10 capsules coming tomorrow, and hopefully I’ll notice a difference within 2 to 4 weeks. It could take up to 8 weeks, though, and I might have to increase the dose as long as I’m not having side effects, and add NADH and carnitine. AI says it helps the majority of those with chronic fatigue obtain moderate energy, but I don’t feel very hopeful. I just don’t get problems I can fix or even greatly alleviate. Yet it’s hard to resist the urge to try whatever I can think of when you’re suffering that much and therefore desperate enough.

I woke up a few times for no apparent reason, and then once I’m pretty sure was due to thunder, and another time thanks to our little attention getters that have to make a scene with the fireworks. 

We had a tropical storm blow through and it took the power out for a little while, right along with the internet. I was a little worried that it would cause a voltage spike and damage the AC like last time because of the way it was flickering on and off before it went out completely but it’s fine. 

The storm delayed the obnoxious fireworks, but it didn’t stop them. They were going well after midnight. I bitched about it on Facebook and Mrs. Twenties said it was like a war zone where she is. I remember it being bad there. The thing is that I’m in a rural area with mostly old people, so I thought things would be a lot more tame here, but apparently not. Oh, to have land again! How I miss our land and house in Arizona! But no matter what our finances are, I will never again be healthy enough to move. This, along with the stress and shitty sleep, had me wake up depressed and frustrated with the knowledge that I’ll almost certainly never get better. Besides the basic CF, it feels like that one pill really screwed me up. I just checked, and I'm not going crazy after all, for feeling like it's still affecting me, because that one pill can take up to 7 days to completely clear my system.

As miserable as I felt, a big smile broke out on my face when I made my rounds checking for notes, messages, and emails in various places and opened Melanie’s message on Messenger. She wants to gift me a haunted doll she got from a thrift shop in her hometown of Cleveland! She believes it’s a Jewish woman who died in her 30s or 40s who spent her life in Cleveland. She didn’t realize when she got it that it was haunted, but she’s been able to determine with her pendulum that even though it’s a male doll, a woman haunts it. She shared a few pictures of it. It’s not exactly aesthetically pleasing, but I’ve seen a lot worse. It says on the base that the doll is affixed to that it was made in Israel. It’s a small doll that I’d say is less than a foot tall. Anyway, that was so kind of Melanie to offer and it really made my day! Or night in this case, since I’m on nights now. It was a delightful surprise mixed in with the fatigue and chaos and sense of hopelessness I’ve been feeling. I plan to surprise her eventually with a diamond painting.

There’s been a new weapon against my sleep, and that’s hip pain. I have that at times anyway, but it seems to be a little more frequent, and I’m guessing it’s mostly because I’m not sleeping on my stomach as much as I used to. Next time around, if it isn’t that or another storm, I’m sure it will be leftover fireworks to fuck with my sleep.

No leaks last time around, but the weird thing is that even though he went into the clinical settings and set it to max at 9.0, it says it went up to 10.9. He also found settings we didn’t realize were there. It wasn’t set for her—this is one of those “for her” CPAPs. It’s supposed to use the algorithms differently, so I don’t know if that will help and make a difference or not.

Oh great, I have to sit and listen to the fucking fireworks for the next few nights. 

I don't know why the hell I can sometimes sleep with a mask without leaks, and other times it leaks. I do know that I'm never going to reap the possible benefits from consistent CPAP use if I continue having leaks, so we lowered the pressure from 4–20 to 4–9. Most people go to 10 and I usually go to 11. I don't know that this is enough to make a difference, though. We'll just have to watch my AHI scores and see how I sleep.

We talked about picking out another pulmonologist and getting on the waiting list for an out-of-home sleep study so I can switch to a mouth guard, but I am just so, so tired of hopelessly fighting for what truly seems like a lost cause and something that isn't meant to be. I think it's time I just give up on myself. You can't make something be that just isn't meant to be. I have no idea why, but I'm just meant to be exhausted. I'm trying to get used to it and learn to adapt and live with it. But. It's been really hard so far. I try to remind myself that if I had energy all the time, I would just end up getting bored and not knowing what to do with it all. 

We also increased the exhalation relief setting, which was on 2 and goes as high as 3. I don't think that's an issue, though. Tom did read, however, that if the pressure is too high, it can leave you tired the next day. Well, if there's a 1% chance I don't have chronic fatigue and it’s all in my device/settings, I'm not going to find that out as long as I keep having problems.

Ordered a liner for the hybrid to see if that helps give it a better seal, although that too is doubtful. I can still use it to make the cradle more comfortable, though. 

Also ordered a new set of sports bras and cotton panties. I'll keep the silkies and the G-strings for sleeping.

I guess I'd better do some updating before I get any more behind. I had quite a reaction to the Doxepin. Nothing dangerous or anything like that, but oh my God, let me start at the beginning!

Last night I had lots of mouth farts. Even with the mouth tape, air would accumulate in my mouth and I have no idea why because I slept untaped the previous two nights without leaks. I guess it's just whatever likes to curse my sleep.

The mowers woke me up on Tuesday, and then my mask decided to whistle me a little tune when I accidentally lay on the pinholes, which are there for exhalation ventilation as well as to keep you from suffocating if the machine stops in your sleep.

Anyway, it was almost 48 hours ago that I took the first Doxepin, and believe me, it was the last! I swear to God I'm never going to take another medication again other than my thyroid pills, even if they told me it was a matter of life or death. I’ll gladly take death because I am just so sensitive to medication.

So I took it at 3:30 in the morning two nights ago, crashed an hour or two later, and ended up sleeping for like 9½ hours. I woke up groggy as hell. Just totally out of it, and my brain wouldn't work right. It was a shitty feeling. I couldn't do much but lie in bed, and ended up napping not just once, but twice. Each time was for about an hour and a half. So now I'm up to a total of 12½ hours of sleep.

So when bedtime came around the next night, I figured I wouldn’t sleep long since I slept so much the night before, but I did. I slept 9 hours last time around and even had one nap.

It's just so fucking frustrating because it's like no matter what I do to try to help myself, it just seems to make things worse. All I do is suffer, and if something up there is trying to drive me to the end, it’s slowly but surely working. Knowing my CF is incurable has been pure hell on me emotionally as well as physically. Knowing it's pointless to try to help myself, I've said fuck it. I’ll just give up on myself till it’s time to throw the towel in for good.

The CPAP has stopped me from having noticeable breathing issues, but it's not going to restore my energy. The machine is no match for CF. I have a sore throat that's common with CF right now, too. Besides, I may not have as many events as I used to but I'm going to have almost as many leaks to make up for them, so I'm going to sleep shitty no matter what I do. The CF alone means shitty sleep quality anyway. No matter what I do or how I sleep, I'm almost always going to wake up not feeling refreshed. 

I literally broke down and tears, realizing that my life is basically over. The CF is a definite life sentence. Especially when it's gotten as bad as mine has gotten. No more trips. No more going out for walks or bike rides or even to the beach. Just going to the store and appointments has become a struggle. The rest of my life will be spent sitting around doing next to nothing. They call it pacing. I call it what it is... being forced to be lazy and miss out on life. There's absolutely no treatment or cure for it, so I'm basically just forced to spend the rest of my life being tired half the time which really sucks.

I am horribly depressed right now and wish I could just get some deadly disease or drop dead from a heart attack. I was so fatigued I could barely get out of bed – it was horrible and it still is. My sleep has also been messed up because of the stress. It's fragmented, and today was cut short, partly because I just lay around so much the day before, and was stressed about Tom.

I’m also really down because, although it's not a surprise at this point, Tinkerbella’s tumor is growing, and she's losing weight. With my experience with rats, I put it at some time in August that well…that’s all I’ll say about that. I’m miserable enough right now.

Tom’s surgery went well and he’s recovering fine, but his 15-minute procedure ended up taking hours because his fucking wife had to end up with a driving phobia and though he’s always sworn he doesn’t mind.

First, the driver parked at Toni’s place. Then, as soon as Tom got into his car, even though he would never want me to drive and I'm at the point where I couldn't anyway, given all this fatigue and brain fog, he immediately wished I were with him. The driver didn't speak English! Why people choose to work in a country where they don't speak the language is beyond me. Sure, it’s better than them mooching off of welfare, but if you're going to come to the U.S., please learn the language first.

Tom wasn’t driven straight to the appointment. They had to pick up other people first, and there were all sorts of communication problems, though he did arrive on time. Then he had to wait forever, and the surgery that was scheduled for 8:30 didn’t happen until 11:00.

He said I was right about how the stuff they gave him would affect him. Whatever they gave him via IV caused him to have gaps in his memory, and his sense of time was distorted as well. I'm guessing they gave him Triazolam. He can remember some of it, just like I could remember some of the dental work I had done on me.

He said that after they hooked him to the IV, they put in several different eye drops. Then they strapped his head, and it was pretty tight. He was told not to move his hands because that would scare the doctor. He said he remembers his head shaking or something like that. He was also told that he needed to focus on a certain light and that the doctor may call out to him to do so if he started to drift.

After the procedure, he was given a couple of Oreo cookies and a soda. He dropped some crumbs on the floor and bent down to pick them up, but the nurses scolded him for that, lol. Same with when he went to leave a whole hour and a half later when they finally came to pick him up, saying that he needed to be escorted out. He said it was funny because the woman was kind of old and frail, and he felt like he was supporting her more than she was supporting him.

So this time he got a driver who spoke English. They had to drop off an old lady who seemed really out of it, who was with her caretaker, before coming home.

His eyes look funny with one pupil so much larger than the other. He's not in any pain but has to resist the urge to scratch his eye because he feels sort of like he has an eyelash caught in it or something. They gave him a rounded piece of plastic to tape over his eye when he's sleeping.

He took a long nap after he got home and ate, then he was up for a while, and I cried on his shoulder after he told me about his day. And now he's asleep again. Because of the long nap, he doesn't expect to sleep more than a few hours. This way, I can take my first dose of Doxepin at bedtime with him up and alert, although I'm at the point where I would do it even if he weren't here or was asleep because I just don't care anymore.

Research suggests that CoQ10 can help with chronic fatigue, but when I asked Rhonda about it, she said she's not aware of that helping, so I said fuck it. Just like with the anxiety, nothing I do is going to help. I'm left with no choice but to be forced to suffer through it.

Tom thinks I'm really tired today because I was on the vibe platform the other day, and that's just too much for me to take on with this disease.

Whatever the case may be, I feel picked on, singled out, helpless, and hopeless. I’m looking at a very rough road for the rest of my life, however long that is, and all I can say is that, at this point, the shorter the better. I’m so, SO tired of dealing with health issues year after year!