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.

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.

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!

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.

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. Tom still thinks I'll eventually get better, but I know this is as incurable as my Hashimoto's is. Some things really can't be fixed or even helped.

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.

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.

Last night…

Oh wow—I got a text message from Vanessa. It’s too late in my day for chatting and I’m not in the mood, so I’ll open it tomorrow. Besides, she made me wait on her.

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!

Vanessa just wanted to share a picture of her tummy bandages after getting a gastric stimulator implanted to help her keep food down. Not a damn word in regards to the texts I sent a while back about Tinkerbella’s tumor. Not a “how are you”—it’s all just her her her. I know that’s just how she is, but I don’t want friends who only care about themselves and who want to keep the conversation 100% focused on them. I prefer friends who care about me in return.

I asked Vanessa if she got the text about the rat’s tumor, and said I hope she’s not in too much pain. “Just the usual post-surgery soreness,” she just now replied. Not a damn thing about Tink. No “yeah, I got it,” and no “I’m sorry about that.” No nothing. 

Okay, Vanessa, we’re done. I was going to block her texts as well as on PB, but I don’t have to go that far. I can just go quiet. Seriously, though, I’d rather someone quietly read me without desiring a discussion than someone who wants to talk only about themselves. At least they care more than people like Vanessa.

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.

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.

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.

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.

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.

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.

I'm really pissed that the editing icon disappeared from below my posts. That's going to make editing older posts a real bitch. Why the hell would they take that away?! I researched how to restore it, but nothing I do works.

Also, I got a visitor who came in from YouTube. But I don't have this journal link on YouTube. Must have been someone who was on YouTube, aware of this account, and headed straight to it from there.

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.

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.

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.

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.