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 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.
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)
I saw my dermatologist yesterday who, like the allergist, suggested that much of what was going on with my face was rosacea... except the dermatologist said he’s seen it be an issue for his mast cell patients.

Anyway, this doctor is really nice, talkative, enthusiastic about everything, and loves his job (or is really good at faking it). He told us about research he found suggesting that low-dose doxycycline has been beneficial to people with mast cell disorders and other immune issues. (Plus it’s known to help with the rosacea.) But yeah, since it’d be at a really low dose and is pretty harmless compared to other meds (at least from what he knows), I’ll be starting that really soon. I’ll also be continuing on the autoimmune drug (can’t remember the name) until things start to settle down.

During that appointment, I also learned that the skin takes in outside materials (idk I’m bad at words) similarly to digestive organs. I would say more but can’t remember much else, but whatever he said was interesting.

He also gave his opinions on the PICC line, surgery, Xolair, etc., and now I feel a little better about the current decisions. (PICC line, then surgery, then Xolair). Still wish I could research this stuff without getting overwhelmed, though. (Actually, the last few times I’ve researched things, I’ve felt surprisingly ok and in control. I think starting the task is the worst part.)
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.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Just got back from seeing my primary doctor (who seems really nice and understanding of everything) so she can confirm the surgery at C1-C2. Of course, she has to check some things off first, so I’ll be getting some tests done and will see a cardiologist to get an “OK” from them. The surgery is currently planned for mid or late April.

But my physical therapist, who’s seen a lot of people with negative surgery experiences, thinks I should hold off. He doesn’t think it’s worth it unless you’re having “drop attacks,” which are described as passing out (kind of) at the turn of the head. My mom has been gathering information, so I can thank her for that (though she hasn’t been listening to me about any of it), and we scheduled another appointment for asking questions. (I have a lot of them.)

Anyway, I got the report from the neurosurgeon at some point, and from what I remember, it described C1 and C2 as being completely separated, so… I guess it’s bad…? Sheesh, I can’t say that things might be bad without feeling like I’m overreacting.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
I am EXHAUSTED (yes, I probably say this a lot). I've had an appointment every day for I don't know how long, and I've had to wake up and get ready earlier than usual for many of them. Because of the near-D.C. traffic and how far away many of the appointments are, I end up spending a lot of time traveling and have been finding it difficult to get food in. Plus exhaustion often leads to things like nausea for me, so that makes eating even harder.

Time to finish typing this hours later at home. I slept for a few hours (or at least an hour I think) after getting home, and that seemed to help a lot. Tomorrow, I’ll be getting more blood drawn. Maybe I’ll get a break after that.

But let’s talk about today’s appointment. Compared to my other appointments, I don’t think this one will be easy to forget. I saw an eye doctor to get the remaining pre-Plaquenil tests done and definitely didn’t expect them to stick some sort of contact lense connected to a wire in my eye. THERE ARE A WIRE COMING OUT OF MY EYE, AND MY EYE DID NOT LIKE IT. I had to skip the eye-numbing drops because they contained some common mast cell triggers, so it ended up being pretty painful, and my eye kept pushing the thing out without my permission. They ended up having to tape it to my face.

Anyway, I was able to get a picture before beginning the test. I’ll put it under the cut because it might be... disturbing to some?? That would make sense at least.

See image... )

Originally posted
on Tumblr.

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

HORMONES.

Dec. 1st, 2016 01:40 am
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
The appointment finally ended (yay!) around 11PM. (I’ve never seen a doctor who works this late.) The thyroid tests I took recently hinted at both hyper and hypothyroid problems, which wouldn’t be surprising because almost everyone on my mom’s side of the family has Hashimoto’s disease. I’m also supposed to quit using the progesterone cream--something that’s been preventing constant daily dilation and hot flashes--and take a birth control pill instead. Even though I’ve already stopped it a month ago, I am apparently ovulating on my period (at least two times per cycle), which can mess with the thyroid test results anyway. My endocrinologist seems to think that being on “the pill” will make any thyroid abnormalities more visible, so I’ll be retaking the test a few months after starting it. (More waking up early...yay...)

Originally posted on Tumblr. 
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Well, the IV is done and definitely took hours longer than expected. I only got one liter of fluids but still somehow feel like a giant pulsing thumb… mostly in my head. I normally get this to some extent when I get IVs. I just don’t know if it’s happened to this extreme before. It’s really annoying and honestly feels like my eyeballs will pop out, and skin is filled with water balloons waiting to break. Maybe the doctor I’ll be seeing today will know something about it. (I’m curious at the very least.)

Originally posted on Tumblr. 
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
It's been a long day spent out of the house getting flexion and extension video x-rays. We had to go a little far away from home because most places didn't have the equipment for this type of x-ray. It took my mom a while to find this place. Thankfully, the people who worked there were all pretty nice, and after everything was set up, the x-rays only took several minutes. Now we've finished all the x-rays and MRIs that my doctor wanted, so we don't have to worry about that anymore.

Guess it's time to return to sitting at home and zoning 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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