Big Step Taken, So Many More to Take

[cathugger]

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. 

Surgery, Recovery, and the Following Appointment

To be honest, I'm impatient. The main thing that's bothering me at this point in surgery is having to wear this cervical collar. I've already started sweating more, probably due to hormone problems because of how I've responded to medication. The collar not having that under control = not a very fun time. As someone who's been almost sweatless, even in the heat, before some some point this year, I am constantly freaking out about it. It doesn't feel like it's something I can ever get used to. 

Compared to right after surgery, though, things are alright. After being put out, I woke up in a small dark room ( with a nurse (?) and machines used for checking vitals, feeling nauseous, confused, and a lot of pain. I think the nurse asked me some questions that I answered with as few words as possible. Then I realized that, okay, this probably isn't the type of nausea that comes and goes. Luckily, they were prepared for that, and the nurse handed me a bowl--one of the few objects in the room from what I remember. Then I threw up. A lot. I can't remember how much time that went on for. I think I've spent the first day puking. (It happened less often as time went on.) Right, it was at least a day; I think I remember not being able to eat or drink for at least a day afterwards. But apparently, when in the hospital for something like that, you can lose track of time. I was shocked when I heard I was in there for five days.

Luckily, my geneticist, being experienced in my group of co-occurring conditions, had a surgery letter ready. A few things included in that letter were that I should get a liter of IV fluids (which they could use my PICC line for, so less needles!!!) before starting the operation. The staff weren't 100% prepared for this, so I started surgery two hours late I think. But it all worked out because the previous patient (whose mom my mom met online and was in contact with actually) was taking longer than expected. So I stayed in a small, bright, closed-off area with my partner and parents for a while. I don't think I was the only one who fell asleep.

Then, either during or after the surgery, I was supposed to be put on some form of TPN and (during) fluids dripping at a faster pace. I didn't think that was necessary, but what did I know... 

Then I was in the small dark room... puking. My mom came in at some point, and I was moved to a different location so I could--you know--puke there instead. It slowed down after a while, and they got my pain (kind of) under control. (F whoever told me that I literally wouldn't be in pain afterwards). At some point, I was able to take a sip of water without throwing up. Then I was somehow able to manage eating the entire meal that they presented me with.

Anyway, I was able to see my parents and partner pretty soon. Apparently, it took longer than we were told (wouldn't be surprised if this was common). During one of the updates in the waiting room, they were told that something in my neck was the worst he's ever seen, even though he constantly performs surgery on Ehlers-Danlos patients. I wasn't sure if I believed them at first because I've always thought of my symptoms as really mild compared to others' with the same diagnoses. Of course, that could still be true. This stuff is complicated. Physical presentations doesn't always correlate with the intensity of symptoms. That would make things much easier, though.

Just remembered that my mom slept in waiting rooms because she was worried about me, and the hospital is over an hour away (sometimes much longer with near-D.C. traffic). I feel really bad about that and don't think I showed enough appreciation for her caring. But I don't know how I would do that. 

Eventually, physical therapists walked me around some hallways, telling me what to do and what not to do. They prescribed me the pain meds they used for at home, and it turns out that I was on the lowest dose of at least one of them. This reminded me of how, in the hospital, I wanted to ask about higher doses or mention that maybe the meds I was on weren't enough. The staff stopped asking about pain management as much, so I thought whatever doses they put me on should've been enough... plus it was hard to say more than one or two words at a time (partially because of the pain.....), so bringing it up was difficult to begin with. Luckily, the started going down after the first few days at home. Before too long, I was just feeling my usual pain, which isn't that bad.

Turns out one of the muscle relaxers they gave me was helping with the muscle twitches, jerks, and tremors. But it seems like, now that I'm off of it, all of that is even worse along with my balance. I'm hoping this goes away soon. Walking has felt like trying to move around with... pegs for feet or something. Not fun. Attempts at going faster to keep my balance (you know, like with bikes) have failed. Quick movements of my muscles along with other things have made my knees jerk around like they're made of funny bones that have all been hit at once. Then I'm not even walking; I'm falling. Bad idea. Some people are saying that fixing this type of instability can make other spinal cord issues (that often go together and I've shown signs of) more symptomatic. I looked up the symptoms of tethered cord, the main concern, and many of the first symptoms involved balance and walking. We'll see I guess.

Information from the following appointment:

Some people notice changes almost instantly after surgery. For others, it can take months to see improvements. 

When asked about what he meant by it being the worse he's seen (I think he meant some aspects of it were the worst he's seen), he responded with "I haven't seen anything like it..." That had me laughing. For a surgeon to have that sort of comment about what they're doing surgery on. This guy doesn't talk much, but he revealed that at least one of the ligaments was... nonexistent?

Anyway, I'm going to try (again) to stop typing and close this up. It's like I've opened a closet of scattered memories, and none of it was expected. But I say that every time I write something long, so... you can just expect the opposite at this point.