Life Log

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 )

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.

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.

On another note, it looks like I’ll be getting the PICC line inserted tomorrow???! I don’t think I’m grasping this because I feel pretty indifferent about it, but I wouldn’t be surprised if that’s what kept me up last night.

That also means home health care will be coming over--into our messy trashy house--the day after to help us take care of it/set things up. Them coming over honestly isn’t the biggest deal to me right now. I’m more worried about showering (which is enough work already) and sleeping while getting the fluid drip. My geneticist instructed that I do a slow “gravity drip” 4 or so days a week so I could wake up more hydrated. Problem: My arm might have to be held in a certain position, and I don’t know how I’m going to handle that as someone who rolls around a lot in bed, sleeps in weird positions, and constantly deals with “jumpy legs.”

I guess I’ll just continue what I’ve been doing for the longest time and “see how it goes.”

I’ve been on nebulized cromolyn for a while (kind of?) now. I think it’s been causing the nose bleeds, which have been fluctuating in severity. Honestly, I thought they were improving for a while and thought that maybe I was getting used to the medication. Then they got much worse, and now my nose is almost constantly bleeding throughout the day. (Like almost every time I look in the mirror, I can see blood coating one of my nostrils.) Obviously there could be a lot of explanations. For example, my dad said the heater was really messing with his sinuses, and a lot of people get nosebleeds at this time of year. Then there’s the fact that I’ve been taking plaquenil for a while now, which often causes easy bleeding. Heck, it could be a mix of things. I just think I remember it starting/getting much worse when I started nebulizing.

I’ll probably try decreasing the dose and see what happens. So yeah, if anyone has experience with this med, I’d be interested in hearing about it!! (Just keep in mind that I’m really bad at responding but would appreciate any input, even if it’s just a few words.)

Originally posted on Tumblr.

The past few days have been good to me... or at least I can see them as being good to me now. I've still be feeling pretty bad physically but have definitely been feeling better than usual mentally. I've also been sleeping less--a lot less. The amount of sleep I need--or the amount my body thinks I need--seems to depend on my mood, which isn't surprising. But I don't usually naturally sleep for 5-7 hours. Not often. I also think that I started sleeping more when we had to decrease the dose of the new medication. Now, I've been on a higher dose for a while, and I've started another medication that could be increasing the effect of the first one. 

I'm still feeling pretty flu-like, but that's not surprising considering it's winter and about time that I start feeling worse. I do think this medication is doing something for my mental health, though, and a small fraction of the meds I've tried have done anything. So that's promising. Normally, around this time, I would have a hard time moving and probably couldn't think clearly enough to type this (not that my brain is that clear right now). I didn't think progress would be this easy. Even if it is, I still have a lot to work on.

Well, looks like my body is needing less sleep now... or at least thinking that it does. I only got about 4-5 hours of sleep, and though I have no problem fading in and out of very light sleep, I can't seem to go into deep sleep anymore. And I feel more awake than I usually do at other times of the day.

So here I am. I've been up since 8 or so, and that's early for me. This sort of thing has been happening more and more lately and might be correlating with the increased dose of Prozac. Oh well. I'm not any more tired during the day, and I might be seeing improvements with my mood, so that's fine with me.

Speaking of medications, I'll be seeing an allergist today to talk about Xolair, and I saw my psychiatric nurse yesterday. I can't remember much about the appointment, but she prescribed a low-dose mood stabilizer that could be helpful for a huge variety of things. I'm also supposed to try logging how full my stomach is along with effectiveness of Xanax to see the dissolving kind might be appropriate. For the same reason, she also wants me to try *shiver* leaving the tablet under my tongue to dissolve. Apparently the dissolving kind is more expensive, and insurance companies often deny paying for it unless you've tried the scary task of dissolving regular Xanax in your mouth first. My prescriber said that, of course, she could lie to them, but there wasn't much of a point if it isn't going to work any better in the first place.