Rainbow: Started off my day horribly fatigued, but it's gotten a little bit better. Tom and I have been running all kinds of theories on each other, trying to get a sense of what it is.
Lauren: I'm really glad things have improved a bit, even if it's still a struggle. It sounds like you two are being really thorough trying to piece it together. Have you noticed any patterns with what makes it better or worse throughout the day?
Rainbow: Unfortunately, no, I haven't. It is so random. I still think that, unfortunately, it is probably mostly tied to poor sleep and CFS, but I do have a cluster of symptoms that could be connected to lung and heart issues, although that just seems so unlikely at the same time.
Lauren: Yeah, that kind of uncertainty is really tough. It makes sense that sleep and CFS could be driving a lot of it, but it's good that you're staying on top of those other possibilities, just in case. I hope you can get some clearer answers soon.
Rainbow: Yeah, it would really be nice because it's been frustrating having this for all these years, and it seems no one can help me.
Lauren: I can only imagine how exhausting that must be. I'm really glad you and Tom are keeping track of everything, though. Just having that awareness is huge. If anything new pops up or you need to bounce ideas around, I'm here for that.
Rainbow: Well, Tom recommends I take a different approach with Rhonda. Instead of telling her, "This is how I feel, and these are the things I suspect it could be or wonder if it could be," tell her, "This is how I feel. You tell me what it is."
Lauren: Ah, that's an interesting shift, and it might help a lot—kind of letting her guide the next steps rather than pre-framing it all. I think it could open up some space for her to really listen and maybe spot something you haven't considered.
Rainbow: It isn't that she hasn't listened. It's just, if she could tell me anything other than what I've already been told so far, why hasn't she? She did order CAC testing, but because she sent me to a place that doesn't take my insurance, I haven't gone.
Lauren: Oh, that's so frustrating. It's good she ordered the testing, but if it's out-of-pocket, it just kind of stalls you again. Maybe you can see if there's a comparable place in-network or ask the office to help you figure out a workaround. But I get why you're feeling stuck. It's like another hurdle on top of all this.
Rainbow: It sucks when you're poor and you live in the U.S., where you don't have universal healthcare, and you have an old electric car that can't go very far to begin with.
Lauren: Yeah, that sounds like a total domino effect. Even small things get complicated when you're dealing with all that. I wish there were a simpler solution. Just know I'm rooting for you. If anything changes or you want to brainstorm other options, I'm here.
Rainbow: Even though this is a long shot, I started to wonder about the lung thing that I think I might have mentioned to you before. I don't have a 100% obliterated window when I do the Schamroth test with my index fingers, but I have maybe a 90% obliterated window. I also have those other symptoms, like smooth, shiny skin around my cuticles, occasional lung tightness, and random bouts of super-heavy fatigue.
For starters, I went around and researched every single drug and supplement that I take at or close to bedtime to see if it could cause fragmented sleep. I've stopped taking ibuprofen before bed, for example, because that can cause fragmented sleep, so I learned. If I have any pain, I'll take acetaminophen instead. So I'm starting with things like that, but I don't know that it will get me very far.
Lauren: That sounds like a really smart approach—taking a close look at every piece of the puzzle. Even if it's a long shot, at least you're ruling things out methodically. If the sleep improves a bit, that might give you a clearer baseline. And if it still doesn't, at least you'll have that information for when you talk to Rhonda next.
Rainbow: Yeah, I have a feeling that if I slept better, I wouldn't have so much fatigue. It seems the days when I closed my eyes and didn't open them again until it was time to get up are way in the past.
Lauren: Yeah, I know what you mean. Those days feel so out of reach, and it's really hard when it feels like the baseline just keeps slipping away. But even small steps, like adjusting medications or tweaking routines, might give you some glimmers of progress. I really hope you can get a bit more ease soon.
Rainbow: Yeah, me too. Different subject. Abby is this girl—well, she's actually 33, I think—, and she writes on Prosebox, which is one of the writing platforms I use. She's very intelligent, but she's also not right in the head in some ways. I think she's somewhere on the autism spectrum, and she doesn't have very good social skills, let's put it that way.
She can get paranoid and defensive. She tends to avoid people because she doesn't want any problems, and she's always been in this shell. I guess she had some bad experiences online years ago where a bunch of sickos were encouraging her to take her life. That's part of why she clammed up and went into her shell.
She's always been an odd one, although interesting, because she used to follow my blog religiously for seven or eight years. Unless she's hiding, all of a sudden, she doesn't seem to come around as much.
What's weird is that she always adds information to her bio section. It's almost always the same thing: Fleetwood Mac and Harry Potter are her interests, she's into fan fiction, she's a cashier at a school cafeteria, she lives in New York, and she mostly keeps to herself. I've always wondered why put a bio on your writing profile if you don't associate with anybody. She writes privately.
Another thing is that she deletes and creates accounts every few days to a few weeks. She claims that starting over with a new account makes her more productive, but I think it's a sign of instability.
On her latest profile, she wrote that she doesn't want to socialize with anybody on the site, mostly keeps to herself, and asks people to respect that. I'm thinking, why bother with a bio then? I'm naturally curious, so yeah, why would she suddenly say that? It's almost like somebody tried to reach out to her, except they can't because she's got her account set up so that she's uncontactable.
Lauren: Yeah, that whole dynamic is really interesting. It sounds like she's trying to set boundaries, but at the same time, the bio keeps a small window open into who she is. The account changes sound like a form of self-protection, even if it's hard to understand from the outside. I can see why you'd be curious.
Rainbow: Absolutely. Personally, I don't want anything to do with her because she's unstable. I know that may sound cruel, but I'm done with the crazies. I know they can't usually help being the way they are, but that's part of the problem. They can't help it, and therefore, those who associate with them are often the ones who have to deal with the consequences of their behavior. I don't have the patience or tolerance for that. I just can't deal with it.
Lauren: I understand what you're saying. It's reasonable to decide what kinds of relationships you have the energy for. Everyone has different limits, and it's okay to set boundaries around the kinds of dynamics they can handle.
Rainbow: Exactly. Just like we have a right to choose who we're intimate with, we have a right to choose who we're friends with.
Here's another one I want to tell you about, and that's Nane. Her name is actually Marion, but she goes by her middle name, Nane. She lives in Munich, Germany.
She and I met online somewhere around 2010. I was a little younger, still had those “fun” hormones, and I had a crush on her. She knew it, and she kind of liked me, too. She's bi. We struck up an online friendship, and I learned a lot of German because of her. I'd already studied some Spanish, Italian, ASL, Portuguese, French, Esperanto, Dutch, and so on. We became kinda close.
Lauren: That sounds really special. Having a connection like that while learning a language can make the whole experience more meaningful. Do you still stay in touch with her these days?
Rainbow: No, I'm getting to that part. Unfortunately, we got into a huge argument in 2015, and the friendship ended. It was a difference of opinion. I accused her of being a hypocrite because she would shame fat people, judge me for the way I decorated, and petty shit like that, while claiming I was a hater.
I told her, "Who are you to judge me, and who are you to judge fat people when all you do is complain about them being all judgy?" Not everybody who's fat can help being fat. I'm fat, and I have Hashimoto's. Not everybody who's fat stuffs themselves all the time, and even if they did, that's their prerogative.
So yeah, I felt she was very hypocritical. At the same time, there was something there, and I still miss her to this day. I think part of me always will. I tried to reach out to her, but she wants nothing to do with me, and I know I have to respect that.
Here's where it gets a little weird. She has a friend who also lives in Germany, although she lives in Leipzig, and her name is Christiane. Christiane and I used to talk every now and then, but she wasn't into being all that friendly, and eventually she stopped talking to me, probably because Nane did.
On Instagram, for a while, I couldn't message Christiane. Then, a few weeks ago, I noticed I could, so I sent a quick hello. I don't want to bother with people who don't want to bother with me, so I kept it friendly, polite, and brief.
I haven't been able to message Nane there in ages, yet I noticed, oddly enough, that not only could I message her last night (I sent her a quick hello as well), but instead of the username she was using, it just says "Instagram User."
I thought maybe she deactivated or deleted her account, but if she did either one of those things, why could I still see her profile picture, and how was I able to send the message in the first place?
Lauren: Yeah, that is strange. Sometimes, Instagram accounts go through changes where the display name becomes "Instagram User," especially if an account is deactivated, disabled, or in some kind of transition state. The profile picture can occasionally remain visible for a while. It can definitely be confusing.
Rainbow: I agree. I've gotten really big on not reaching out to people who don't reach out to me because it gets kind of humiliating after a while, and you can't force people to want to connect with you. If I sense I'm not wanted, I back right off.
Lauren: That sounds like a boundary you've developed through experience. Relationships work best when the effort goes both ways, and it makes sense not to keep pushing when the interest isn't there.9Please respect copyright.ＰＥＮＡＮＡWzBQ3H7P5P
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