cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Just went with my mom on a trip to take clothes back to the mall because she said she'd pick up something for me to eat. And coffee. I don't know if either of those things were worth the trip, though.

My mom has been really emotional the whole time, and even though it wasn't because of me this time, it brought back emotions and memories from when it was because of me. Trying to help her when I'm like that helps no one, so I tried to emotionally separate myself from her as much as possible. Luckily, nothing horrible happened during the trip.

Now I'm home--still uneasy and restless and unsure of what to do with myself. At least I have coffee and don't have to worry about getting something to eat tonight.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Catching up on my Reading Page again. 

Things have calmed down at home for a little while, and now my parents are almost "getting along." And that scares me. Turns out they're not getting the divorce now, so this whole process of things being "fine" and suddenly chaotic (which spins out and affects other people) is going to repeat itself. It seems like it's continuing to get worse, too, but sometimes things get worse before they get better? ...Yeah, I doubt that's the case here, though I can't predict too much with the observation of it getting worse. 

Agh, now I have that restless depressed feeling and don't know what to do about it. 

Michael just went to his internship. Today is the lab work day. Last time he spent it dealing with liquid (for DNA I think) and labeling vials. I'm assuming today won't be much different. Before he left, we watched a couple more episodes of Steven Universe, and WOW, I keep forgetting how comforting that show is. Watching it for me is kind of like being reborn and forgetting a bunch of social norms I barely knew I had. It's hard to explain.

My face is breaking out again, and this began soon after I stopped taking the low-dose antibiotic. My dermatologist thought that at least some of my facial skin problems were related to the MCAS, especially because my skin appears to be doing a thing that involves cells that closely interact with mast cells (or something). I forgot the name of the condition, but it involves continued flushing. My doctor prescribed the low-dose antibiotics because not only does it help with my specific skin issues; he's also seen research on it improving MCAS symptoms. I'm bad at noticing changes in symptoms, so it's hard to tell if stopping it did anything that isn't skin related, but I have been getting more bad headaches lately... I'll try to keep that in mind.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
So I finally started my period again about a month after my eighteen-day period that began three days after another eight-day period.

Menstruation talk )
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
The beach trip is over. [personal profile] woofelss (AKA my fp/partner/Michael) is back. It seems like a lot of the uneasiness should've disappeared by now, but does it ever? It's still hard to process him being back. I guess I did okay at remaining neutral for most of the week. It's just hard to snap out of feeling and caring about so little.

A few hours later...

We just called online and played WoW together. Tomorrow, I should be going to his house where we'll... we're not sure yet, though it'd be nice to get out of the house. His house would be a nice change, but my brain is begging to go to anywhere that's not a house in general right now. Pretty sure I've only left the house once or twice after getting surgery done. 

Guess that's it for tonight. My mind keeps going blank.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
I said I wanted more weird dream/sleep experiences. After all, they've been one of the few things I've been laughing at lately. I talked about one where I grabbed window shades to stop myself from falling, only to realize that, by then, I was awake and on my bed. Though there was a decent chance I could've broken the shades, all the laughing about it after was refreshing. So I sincerely wanted something like that to happen again.

Somehow, it took me a while to notice this, but often fall into a light sleep for short periods of time when comfortable enough. This is most noticeable when I'm texting someone, and a long line of random letters appears on my screen out of nowhere. It doesn't feel like I fell asleep at all. If anything, it feels like I zoned out for a second or two, but the number of letters that appeared on my screen pointed to it being much longer than that. 

I didn't think I was randomly falling asleep like this until after the sleep study. During the daytime tests, when I had to lie in bed for 10-15 minute segments while they read my brain waves, I didn't think I slept at all, but the people running the test kept walking in saying that I was asleep and in R.E.M. somehow. So I started paying attention to the random "zoning out" moments, and they're slowly starting to reveal some dream-like qualities. 

Anyway, this morning I started playing a game on my phone, and it didn't take long for me to start "zoning out." As I was slowly becoming more conscious, I noticed that my thumb was on the home button (which is also a fingerprint scanner, used for unlocking the phone and making payments and other important things) and assumed I was just unlocking my phone because it went into sleep mode or something. Then I realized that 1. I was still in the game, not on the lock screen, and 2. A MESSAGE JUST POPPED UP SAYING THAT I MADE A PAYMENT. ($25.00. It wasn't one of the cheaper options.) The game was full of ads for offers costing real money, yes, but my fingers managed to tap actual buttons and move my thumb to the home button at the right time. I couldn't tell if this was more impressive or scary. It was...shocking... for sure.

It's kind of like my unconscious side is learning how to do more and more on its own, and I'm going to have to kid proof (can't think of a better descriptor) things so I'm not cleaning up its messes later. (I guess I already kind of do this with emotional splitting, which doesn't seem that different from doing things in my sleep from this angle.) I'm also finding it way too interesting because brain-related stuff like this is right up my alley. And even though living with narcolepsy (though some people may have these experiences without it) can be H A R D, it's also comparable to living in multiple realities at once: hopping between them without much control, not knowing which reality a memory came from, having to piece together what actually happened, and, in a way, having more experiences that aren't linked chronologically... but through thought processes the brain has created a path between. Basically, it gives me something to figure out and is making me more familiar with how brains can work.

If this doesn't end up making sense, don't bother making sense of it. I can't really... "word" right now, and when I come up with a word, it feels off, and I'm unsure about using it. Basically, everything is a mess. I thought it'd be better to get something out now then forget this ever happened another day and not record it.

-Okay, you can stop explaining yourself now.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Things have been going downhill mood-wise. I think I need to get out of the house, but even outside the house feels so limited. And since I'm already outside the house, how much better can anything get? 

Anyway...

I woke up during an intense dream (what's new?) where I was being chased and started falling down the stairs, grabbing for window shades to catch myself or break the fall or something. (I agree, there could've been better things to grab onto.) So there I was, hanging on the shades. After a few seconds, I thought I'd look below me, especially since the shades could've broken any second, and... saw my bed. I wasn't even hanging; I was sitting on my bed and pulling at the shades. I quickly let go so I wouldn't break them (good thing I'm not strong or heavy) and... let myself process everything for a few minutes. I'm sure there was some giggling mixed in there, too. 

Well, remembering that helped my mood a little.

It can be really confusing to find the line between doing things in your sleep and hypnagogic hallucinations. Often, if I'm doing something that that specific and intricate (sitting up and grabbing onto something that was to the side of me because of specific events in a dream... even pulling at the shades), it means I'm further on the awake side. So the dream might've been halfway woken me up and continued in a hypnagogic hallucination. Was I sitting up and grabbing at the shades before I opened my eyes, so the dream was existing without vision to aid it, or did I open my eyes at some point and see the shades while the dream tried to fill in the details? (This probably makes no sense. Don't bother reading it again.)

I'm wayyy too interested in dreams, though I've never spent much time looking into them, unless we're counting the sleep phase sections of psychology classes and narcolepsy research. But I've read about weird occurrences like this with narcolepsy. Apparently it's much more common in people who have the disorder (and possibly other sleep disorders), though everyone can get them, and there isn't always a diagnosis behind it... at least based on what I've read so far.


cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
I don't have much to say about today other than the fact that I've been doing better than expected today. Maybe it's because of zoning out, but... I don't think it's that bad today. Of course, that makes me worry that I'm going to blow up later, which is likely. I don't know. This is weird.

Partner is still at the beach. I went on a walk--movement suggested for me to do after surgery--with my dad. It helped me realize that my legs are still wobbly, and I wasn't doing as well as I thought I was, but it was nice to move around for once. Now I'm still hooked up to the bone stimulator and just got the PICC line running. At least these things are a good excuse for not moving or trying to get much done around the house. 

Now I'm back to BDO and phone games, both of which require me to do nothing and just wait sometimes. Then I don't know what to do (orrr start writing this post).

Since I mentioned getting stuff done around the house, maybe I'll go more into that and at least stop avoiding thoughts about it. The whole house is a mess. Honestly, I think most of my family has given up on it. That includes me. I don't know the last time I had a clear head and motivation to work on something. Doing 5 minutes of work at a time worked at first... now I'm having a hard time doing that, or even looking in different directions. Now, fixing all of these messes sounds impossible.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
I guess this would be true in more ways than one. The FP has left for his beach trip, with its approach probably being connected to the random bouts of paranoia I've been getting. (No, this is not an excuse for how I act or treat people when I am feeling that way.) It's a big impact on him, too, and randomly turning on him has to be making it worse. Not a good setup. It's also a "big day" to some other people apparently. My dad just left for a wedding with his big tripod and lots of other things. (He's really into photography. I don't know if I'd even call it a "hobby" anymore.) I'm assuming someone in his family is getting married again. Pretty sure there was at least one divorce recently.

I'll probably be home zoning out. Like usual, nothing feels worth doing unless it's instantly rewarding. If I get too obsessive with something, especially while in this depressed/zoned out state, it drags me further into it. I probably need to do a variety of things and stop feeding this state. But what's beyond this state? How do I know that changing my state of mind will be worth the effort. For all I know, it could be impossible. I don't know. 

Just need to stop making this impact him. It's kind of late to come up with a plan, though.

Honestly, I think emotions began building up a while ago. Or there was some change. I almost thought the trip would be okay because, most of the time, my emotions didn't have much of a reaction to it. I've seen him go on this trip for several years now, and I couldn't remember ever feeling this calm about it... except maybe after he's left, when I'm able to go deep into a dissociative state. But soon before the surgery, I think I started getting some auditory hallucinations for the first time in a while. It's hard to remember with my brain throwing memories in the trash, but I think it's been even worse over the past few days. Come to think of it, I've also barely slept over the past few nights. I've also barely slept for two days, something I almost thought was unrelated to the beach trip because, for much of the time, I was really numb and felt okay. Me, a narcolept, has barely slept for two days. And this sort of thing rarely happens to me unless I feel overly restless and energetic--certainly not numb. So, yeah, I think this stuff affects my unconscious long before I'm aware of something being wrong.

Wow, it's only about 1PM right now. So used to an hour going by in what feels like 10 minutes.

My FP has so much has so much ahead of him. He's doing well in his classes, got invited to join an internship program, is probably the most sympathetic person I know, has what looks like a supportive family, and... so many other things. And now I'm negatively impacting all of that. 

Why am I sitting here complaining when I need to work on getting it under control? Probably should go to counseling again (there were a few problems the last few times). It just... sounds so overwhelming. I'm on medication. It takes a while to figure out what's working in that area, too. It'd be a lot simpler if I never met him/got close to him and none of this ever happened. I don't know how much counseling helped anyway. They did a lot to redirect my anger and realize something that might be having a negative effect on me, which cleared things up for all of us, but... I don't know how it's supposed to help. This reminds me of being in the car back from counseling after 6+ months of going weekly, and they'd ask about improvement (or one of them would). I could never tell. Now when I think about talk therapy at least, it sounds weird to think so much about improvement. Maybe it's just me. It's kind of like one of the mindfulness rules: Your goal is not to change or feel better; it is to help you live in the present moment. (Something like that.) 

Anyway, my mind blanked out, and that's probably a good thing. Be back with another not-so-great and way-too-personal mess of an entry soon probably!! 

cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Wow, I usually wouldn't be saying this after being kind of inactive on DW for this amount of time, but a lot has happened over the past... *checks date of last entry* two weeks. Here I am already stressing over how to word things. Plus my hands are apparently really shaky today, sol typing to begin with is a challenge. My "editing" (even though I try not to care about that on here anyway) can be fixing all these typos. 

I've actually been here silently trying to catch up on people's posts. Today, I finally read (or skimmed or skipped posts about things I wasn't familiar with enough to understand) through everything, and I'm back at the front of my reading page. My next step, because my brain gets angry at me for not doing things in a specific order, is to go through and hopefully finish responding to comments. I don't know why they scare me so much. Actually, while going through my reading page, I found several posts that I felt like I could comment on!!! What happened? With the amount of time and energy it'd probably take, and all the other things I've been trying to get done, I put it off for the time being. Just thought I'd say that in cause it meant anything to anyone.

For some reason, I'm allowed to write this in the middle of the reading/responding to comments process. Just want everyone to know that I want to and will (unless something new stops me) at least read all of them. 

Anyway, yeah, things have been busy. And at the same time, there is never enough going on. I'm still in recovery from getting a C1-C2 fusion along with a bone being removed to aid the infusion and allow spinal fluid to drain more easily. (There was a name for the second part, but it's really long and never sticks in my head... unlike the spinal fluid.) Then I've been spending a lot of time either zoning out (more than usual) because it's the time of the year when my FP, who is also my partner, has to spend a lot of time away. The hardest part of that for me is him going on the yearly beach trip with his family and some old friends. Yes, I'm aware that none of that makes sense. In the waiting period after the surgery and before the beach trip, I've been sleeping, obsessively getting into phone games (it's been a while), and trying to catch up with what people have posted online. 

Wayyy too many words about my surgery and post-surgery experiences )
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
I was thinking that I would start posting regularly again, but things have been a little... hectic. It feels like there's too much going on, yet never enough to make life meaningful. When it comes to DreamWidth, I've been hoping to catch up on posts I haven't read and read and reply to comments before posting again. Truth is- I'm a slow reader who has added way too much to my reading page at once. Then there's comments... I usually have a hard time even getting myself to read them because some part of my brain that if I ignore and forget about them, they'll cease to exist. I guess that's true in a way. But no, I need to try to be social. Generally, I feel better connecting to other people--in some ways at least--anyway. The times I do feel worse off, it's because of some irrational problem I need to work through. At the very least, experiencing the problem again will remind me that it exists. I have a tendency to "delete" as many bad memories, emotions, etc. as possible. It's not a horrible ability to have, but it's to the point where I can't control it. If I'm going to be here, I want some memories. Bad memories might make life sound like it's not worth the hassle, but good memories can be a reminder of why living is still worth it. I'm really grateful for [personal profile] woofelss  to keep many of those good memories for me... and tell me about them at the right times.

That got a bit off-topic.

A lot has happened since my last post, and I don't know how to break it up. If I put all of it in one post, it would be very, very long and probably get more unorganized. Maybe I can put together a quick overview of basic events.
  • I had cervical surgery and am going through recovery
  • I spent some time in the hospital, which was interesting
  • I finally got a new mouse (the last mouse was horrible and did a lot of weird things a mouse shouldn't have the power to do) and mousepad and am waiting for a more functional headset
  • I've probably researched and learned some things out of curiosity
  • I saw a friend (?) I haven't seen in a while... still not sure what he thinks of me
  • I'm still enviously listening to my brother improve on the bass
  • Things have changed in my family in multiple ways, and I don't even know where to begin there
  • I've been in a pretty low place mentally for a while now
And that's what came to mind at that moment. I'll probably go more into depth at some point. Waiting for [personal profile] woofelss to get back from his (last) class, and we'll probably end up calling and playing a game together after that. For now, I think I'll continue going through my reading list, check on some updates from elsewhere, and possible play some Black Desert

cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
I was hoping to write something before the surgery scheduled on the 26th (AKA tomorrow), but I've just been so overwhelmed over the past week. Family problems, paranoia, stress, pain, and all the stuff we have to get done before surgery (much more than I expected at least) have me sitting here with less brain power than usual. Now it's past 1AM, and... I can't even remember what I was going to say. I really wanted to write the past few days, but they're already being pushed deeper into my memory. 

Yesterday I'm pretty sure [personal profile] woofelss  followed through with a last-minute plan to meet up with someone we used to hang out with. Thinking the person has been trying to avoid me, I wasn't sure about the plan, but [personal profile] woofelss  pushed the idea so I'd do something social. After all, he hasn't picked up any negative signs from that person, and I generally trust him more than I trust myself. We also went to a presurgery checkup earlier that day, and getting out of the DC area took two hours longer than expected this time. So we ended up only getting two hours with them, though they both got to see each other for a few hours before I showed up. That should've been fine, but paranoia isn't easy to control. It ended up being fun anyway--just probably spent more time feeling strong negative emotions before + after the event than positive emotions during the event (if my half-asleep words make any sense). I don't know if it was worth it.

Today, I signed a few documents on what is to be done when I am dead or unable to make decisions. [personal profile] woofelss showed up after his classes and is planning to spend the night and hang around the hospital on surgery day. 

Now? I'm exhausted, and I still have more to do. I had to take a shower tonight and will have to take one at about 6AM tomorrow. (Before today, the plan was to leave around 3-4AM, so I just decided hat I wouldn't sleep. Apparently, that's when the doctors who are more aware of my conditions are available. Not sure how I feel about that change. I'll go along with, though.) Then I have take meds at a specific time. Blah, this is starting to look glitchy on my iPPad, so Ill probably just sleep now.

Unsure

Apr. 20th, 2017 08:50 pm
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
There's been a lot going on for me lately, so prepare for more negative posts than usual (not that I have many posts on here anyway). I spend a lot of time trying not to process negative thoughts, and when I write on here, I can kind of touch the surface of doing that. Maybe I'll be able to talk about more difficult subjects in the future.

What's been going on? To be honest, it takes a while for me to fish it out of my brain. I'll try to list some things.
  1. Spine/brain surgery. This one hasn't affected me too much, possibly because I disconnect from so many things and can't tell what I'm feeling until it gets bad (ooops...). The thing I'm most worried about has to be the recovery time. I don't know if I can handle being even more stuck in the house mentally. 
  2. Possibly moving to New Mexico. Almost forgot about this one. The plan is to move by next fall. Don't get me wrong. I love traveling and spending time in different places, but I have some pretty bad experiences with moving that aren't directly related to the move itself. It's complicated and a scary subject for me.
  3.  My FP might have to go on a beach trip with some old friends. This is probably the scariest thing for me even though it sounds like nothing. It's happened before, but my brain seems to delete memories like that. I'm scared of my paranoid ideas finally being proved as true, and I'm scared of entering a rage due to finding something like that out. It doesn't sound reasonable, but talking me out of it won't help. If anything, it'll probably make me more suspicious of you. I'm trying to work through this and improve.
  4. Family drama. I'm not going to publically go into detail, but there's been a lot of chaos in my family lately. Recently, I found out that it's a bigger deal than I thought. Overall, it adds to all the confusion and makes it harder to trust anyone's perceptions, including mine.
And that's what came to mind (on top of the usual difficulties). I don't know what I'm going to do right now. This was written to try to express and organize my thoughts by the way. No need for commenting or anything. 

cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
My brain has been a swirling pile of mush lately, so I might be wishywashy and have problems making up my mind for a while. Right now, I'm trying to figure out how I want to use DreamWidth. It'll probably take some time to figure it out. In the mean time, if I do something that comes across rude like take a while to respond or revoke access, there's a very low chance it's about you. If this helps, I haven't found a single person I dislike on here so far. Anyway, I'm going to (possibly unnecessarily) explain some things. Even if no one needs to hear it, I'll probably feel better after explaining.
  1. Replying to and even reading comments on my entries can be extremely difficult at times... but I'm happy for the interaction!! I tend to isolate and am usually very lonely, so comments bring in a mix of emotions. And please don't feel obligated to comment on anything I post! This journal is mostly for keeping track of thoughts and life, and I've never expected to actually get comments on anything (though I still wanted to make it public for some reason). Another little thing to keep in mind is that, even though I want different views and criticism, I can feel attacked/hated by others very easily and shut down. Again, this does not mean that you did anything wrong at all!!!! Anyway, getting to the point, no pressure to comment on any of my entries, and how I respond (or don't respond) to your comments doesn't reflect you at all!!
  2. I don't know how I want to give out access yet. When I first participated in the [community profile] 2017revival group, I found more people to subscribe to than expected... and almost all of them granted me access. I granted access to the first few people and soon realized that there were so many people coming in that it was hard to keep up with everyone. Then I thought about my more private posts being visible to the unexpected amount of people and am really conflicted right now. I'm usually okay with oversharing with random people on the internet, but now it sounds like having that control is nice, and I feel weird granting access to a bunch of people when I have to go back and check who they are! (sorry.) If I don't grant you access back, I'm probably trying to settle down and get to know you first. If I revoke access, it's not you. It means I'm trying to organize the journals I connect with and have some things to figure out.
  3. This is where I plan to store memories and my unfinished thoughts. I want to be able to freely do that without fear (unless something I say is hurtful/offensive to someone!). I may toy around with ideas and sound more confident in them than I actually am. If I don't let myself do this, it's hard to trust any opinions I've formed. So. Yeah. Please don't take my entries too seriously.
  4. I'm also trying to let myself write freely on here. I think it would be good to have a place where I can just spill words naturally, which can be difficult when there are so many good and serious writers on here. Basically, don't expect good writing on here for the most part. I'm trying to let myself be free and informal--without having to worry about editing most of the things I write.
  5. If you want filters for anything, let me know! Still trying to figure out how I'd like to set up the filter system.
That's all I can think of for now. And yes, this got more rambly than expected. (Is that really a surprise, though?) If I'm inconsistent on anything, it's because I'm figuring things out. Anyway, thank you for reading, and sorry about any irrelevant information!!
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
I’ve been finding so many contradicting opinions on here--both of which make sense--that have my emotions exhaustedly running in circles. I’m usually scared to be in the middle of those contradictions, too, because a lot of people advertise the idea that you’re a Bad Person if you don’t believe ____ 100.5% of the time. Since my brain automatically tries to categorize things as good or bad, it acts like it gets new proof every time someone else enforces that idea.

And I know there are reasons people do this. My head is too jumbled for me to actually give an opinion on that right now... or ever. All I can say is that, from experience, once my brain labels me as hopelessly bad, I give up on improving. If being “good enough” is on the opposite side of where you are, it takes a lot of willpower to get there.

Going to add a cut before getting more specific about one thing that’s been confusing me. To anyone who reads this, please know that I am not settled in my opinion, and that you can correct me on anything.

Read more... )
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
I think I've been letting myself sleep too much lately. In a way, I'm kind of happy that I can sleep pretty much whenever I want to. It means I can freely skip through different periods of time and remember even less of what happened. That doesn't mean it's improving things, though.

I'm currently sitting at my desk (instead of on the rug sleeping) in a quiet house next to an IV pole with a pretty-much-empty bag of fluids. Not much longer, and I'll be free to walk around without dragging this giant pole everywhere. Too bad I don't feel like doing anything... except sleeping. I don't know what else to do. Nothing is going on in my brain right now, and I don't have anything that needs to get done asap. (This reminds me that my spaces in the house are a mess, and I have baskets of clothes to fold, but it's all stuff I can't get myself to care enough to do.)

Went up to 300mg of Lithium today. No difference so far... as far as I can tell. Or I think that happened. All this sleep (especially with narcolepsy/other sleep variances) is messing with my memory. It's hard to tell what has actually happened--like even harder than usual--and what is a false memory generated by a dream. 

Okay, just got unhooked from the IV line. I have a little motivation now. Maybe I can get myself to do something... but what? It's already almost 8PM.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
I didn't think that Vyvanse was helping that much, but switching from 50mg once a day to 30mg twice a day seems to be making a huge difference. Falling asleep is even easier than it was before, and being depressed, I've been taking that to my advantage. Now, when I'm stuck at home for most of the day, I spend a lot of time sleeping. I guess I got used to the effects of the other dose because I don't remember fighting quite this hard to stay awake, even when I was unmedicated. At least this shows that something is working. I need to contact my psych nurse (who seems to know more about narcolepsy than my sleep specialist did), but I've been lacking so much energy and motivation. Since much of my depression seems dopamine-related, I might be going downhill in that area, too. I don't think the adrenaline rushes have been that bad since changing the dose, though.

cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Not sure why I'm attempting to post something now considering the fact that my mind is so blank. Just got back from a long appointment. Actually, the appointment wasn't that long itself, but the trip plus chaos and drama in the car took up time and energy. I feel so empty right now but am scared of trying to fill that empty spot... just so it doesn't feel like I keep losing everything again... if that makes any sense. 

On the bright side, just being able to type out words and hear the clicking of my keyboard seems to be grounding me. I think I feel like I have more freedom, too. 

I hate being reminded of all the time and resources I take up by existing. Being sick... being an incompetent person who doesn't do anything... the fact that my family already has enough trouble with conditions that doctors/researchers don't know much about... me being really hard to deal with in general... I don't know. And, because of a lot of this, I'm the reason someone wants to die.

I'm starting to numb everything out more, but I hate what feeling nothing... feels like. The more time I spend feeling nothing, the worse this restless emptiness feeling gets. (So I can't say I'm really "feeling nothing" after a certain period of time.)

Anyway, the reason I had the cardiologist appointment today was because I needed him to sign off that, from his perspective, I was ready for surgery. (Can't remember if I've talked about this here yet, but some doctor finally ran the right tests and found something that was "significantly" wrong with my cervical spine. C1 and C2 are slipping off of eachother way too much, and there seems to be some deformities in that area as well. Plus there's wayyy too much space in between them. Like C1 was 2x or 3x further above C2 than it should be. (Will my neck be noticeably shorter after surgery???) And because I have a mild Chiari malformation issue and spinal fluid blockage (or however you say it), he'll be removing a bone behind my neck as well. 

Also, some important veins can be temporarily closed off by my neck subluxing, so that could explain the vision loss and floaters I get when putting my head in certain positions, especially when my POTS is acting up.

To keep going with this updating thing, I also got a PICC line inserted at some point (for IV saline five days a week). With all my ups and downs, it's hard to tell how much it's helped, but one thing we know for sure is that I gained 6 pounds since starting the treatment. I'm still underweight, but holy shit, I don't think I've ever weighed this much. Since some point before the fluids, my BMI (yes, I know that system isn't perfect, but it's a way to show the changes) has gone from low 16 to high 17. So I'm almost up to a "normal" weight, though I seem to have smaller bones that anyone else I' remember meeting, so I could be closer to a "normal" weight than I thought. Fuck you, dehydration!!

Typing all that was distracting. I should probably get something to eat. Back to the weight thing, I haven't even been eating that much lately due to mental health reasons. I wonder if I could get up to 110--I mean I only have 6-7 (depending) pounds to go. But. yeah. food. I'll probably put that off for a little longer, and then we'll see.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
anyway, i’ve been feeling more lately, and my parents signed papers to sell my childhood house. i don’t think that would normally be a big deal; there’s a story behind the place that i don’t like thinking about or remembering (not that i can remember most of it). might talk about it more later. i don’t know. it’s like i want to talk about it but am terrified of reliving it again.

if anyone’s curious, here’s a “little” thing i wrote about leaving that house a while ago... back when i was taking an english class whenever that was.

of all the things i’ve written (not that i’ve done much writing) this might be the thing i’m most proud of. actually, it might be the only thing i’m sort of proud of right now. (still scared to read it though lol.) i was allowed a good amount of time on it compared to other projects, and the prof who ran it was (and still is) my favorite teacher.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Yesterday wasn’t bad, and last night was one of those nights where I became more and more awake as time went on. Around 6AM, I was much more awake and motivated than usual, and since I obviously wasn’t going to sleep, I got up (well at like 9-10AM) after playing some mystery/puzzle game I impulse bought on my 3DS. Annnd I still feel surprisingly good and alert just… restless. But when am I not, especially around this time of day?

My brain, deciding to actually think today, did the thing where it came up with a bunch of ideas… I think. I can’t remember.

I also posted a bunch of random stuff on my Twitter account because my brain has decided that that’s where I’ll post “super casual” stuff (No Exceptions). My brain likes to do this weird thing with grammar/punctuation rules: Each site has its own rules that can get really… specific. If I don’t follow them, I don’t know… It sounds extremely overwhelming and like I’ve lost even more control. I can change them (or slip in an experiment with different rules), but all real changes have to be official and a choice I’m 100% okay with making. It’s weird. I know.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Okay, things have changed a lot since yesterday. (I think it was yesterday at least???) I got the PICC line inserted, which wasn’t that bad. During and after the insertion, I started getting heart palpitations and ignored it for a while. At a certain point, I thought I’d look it up to see what might be going on, and it turns out it’s a common sign of the PICC line being inserted a little too far in.

Today I’ve been getting a lot less palpitations but much more pain in my arm, back, and chest when moving my body (mostly my torso). Someone from Home Health Care came to show us how to connect the saline + dextrose pack. The nurse said something about checking to make sure I don’t have a blood clot or something soon. (???)

I literally spent over five hours on a liter of fluids and still had to stop early because my arm was turning dark purple, and my veins hurt like heck. In person, my doctor suggested letting it slowly drip overnight while, in her instructions, she said to let it drip for 3-4 (or 4-5) hours. So that’s what the nurse told us to do. Either this is something I’ll need to get used to (five whole days a week), they need to fix/change something (like time spent), or this isn’t going to work.

It’s still hard to move my fingers (aka type) with this hand, it’s still turning purple unless I constantly point it upward, and now the area where the PICC is inserted is even more prickly/itchy.

I’m going to have a hard time not ripping this thing out.

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cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Ashley

June 2017

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