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)
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.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
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.”
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Apparently I’ll be getting my PICC line inserted in about a week (??), and I’m testing out dressings (or I think that’s what they’re called). At first I was like, “Oh great, more sticky patch-like things.” I don’t know if I’ve ever had a sticky patch put on my skin without problems (nothing that bad–just angry mast cells on my skin). It’s not a big deal if I leave them on for a few minutes; the redness/other effects on my skin will often last less than a day or two days at the longest.

It’s different when I constantly have to put a sticky patch on one area of skin for days/weeks at a time. It seems like my skin is just now recovering from a bandage I had to wear (and switch out of course) for over a week… months ago. It’s not bothering me much; it’ll just get red and itchy much easier than other patches of skin. I could even see the outline of the bandage when something bothered it until recently. And while I had to keep that bandage on (and yes, we tried TONS of different bandages, and I think it got to the point where putting pressure on that area made it angry) it was itchy, painful, burning, and covered in moving bumps (some pus-filled).

So yeah, I wasn’t looking forward to putting more patches on my skin, but these are turning out surprisingly okay. I’ve had one on my arm and one on my stomach and have had almost no problems!! Let’s hope the whole PICC line thing turns out that way, too (ifff we end up following through with it).

Closeup of a wrist and part of a lower arm with a clear, wrinkly, plastic patch covering the skin right below the wrist. The arm is pale, and blue veins are lightly visible.Closeup of a rectangular plastic patch with rounded corners on pale skin. The patch is clear and looks wrinkly.

About

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

June 2017

S M T W T F S
    123
45678910
111213 14151617
18192021222324
252627282930 

Syndicate

RSS Atom

Most Popular Tags

Style Credit

Expand Cut Tags

No cut tags
Page generated Aug. 21st, 2017 11:54 am
Powered by Dreamwidth Studios