Temporary Lair
**CW for medical talk and blood talk. If you read further, it’s at your own discretion. You’re responsible for your own Internet experience, please be sure to appropriately manage your content viewing.**
Well, we’re here. Sort of. I’ve held off on updating both here and on YouTube because a couple of things have gotten in the way.
When we arrived, my feeding tube displaced. I felt a pop and it wasn’t pleasant. It’s the worst displacement I’ve had yet, and it bled. It actually bled every time I tried to stand or walk. Ordinarily, we would have gone either to the emergency room my surgeon was affiliated with or insisted on an emergency appointment with him. Seeing as most emergency room visits for feeding tubes never work out for me, no matter how much bleeding I have going on, we don’t go for feeding tubes unless forced. Also we didn’t actually have a surgeon yet because we only just moved here. Awful.
On top of that, we were having additional problems with our insurance transferring states. It shouldn’t have been an issue at all, but because of some red tape, it wound up taking a total of almost a month by the time all was said and done. Since Master Pravus works from home, this really shouldn’t have happened, but due to some weird loophole- it would up happening and so I wound up having no insurance for a solid month. And going with a feeding tube to the emergency room with no insurance, bleeding like that or not- well- it just didn’t sound smart to us. Especially with COVID being so awful. So we waited. We watched for fevers and I had to lay mainly on my back, but I waited. It was really awful though and I was in indescribable pain during that month.
About a week before I finally was due to see the doctor, the bleeding stopped, and the pain calmed down. It still hurts a lot, but I could tolerate it enough to move around. Before I could barely move from lying flat. I’m the sort of person that rarely takes even a Tylenol and I was taking it around the clock while I was bleeding on top of Ibuprofen. So I know something is going on in there. >.>
One thing I didn’t mention is that also while I was waiting around to see a surgeon and bleeding a lot, I was sleeping in bed at night, and one of my hernia repair places just let go. I had screamed in the night and Master Pravus came over to look. (Of course I don’t hurt myself doing anything “worthwhile” only while doing ridiculous things like sleeping, right?) Obviously he couldn’t see anything from the outside immediately, but he could feel something wasn’t right, and I was in a lot of pain. I did manage to get in to see a surgeon finally. He was really rushed but he seemed really concerned. So we asked the doctor to look at that too when I went in. The same surgeon would be repairing that as would be repairing my feeding tube anyway.
He said we need to see Radiology to figure out what’s going on with my feeding tube. That makes sense to me. I mean, he could tell from the outside that something’s wrong, but you’re not supposed to adjust a J Tube bedside unless you’re absolutely certain it’s in the tract, and we’re both not certain of that, and something caused a lot of bleeding. So we need to go see what’s going on. The trouble is, we’re still waiting to hear back from Radiology because we saw the surgeon the day before Xmas, and it’s (as I type this) a day before New Year’s. We’ve called a couple times to check on things though to no real avail. ::Sigh:: Hospitals are really busy right now though, and on top of that COVID is making everything really awful. Even still, I haven’t been as comfortable as I was before the trip and I am looking very much forward to fixing this.
He checked my hernia site and he said he’s sure that I popped it. We need to discuss the repair but before we can even talk about that he needs me to see somebody about my nutrition status because as he pointed out, he could tell just by looking at me that I’m anemic and I need to get my blood status up to scratch before we consider doing major surgery, which makes complete sense to me.
Another thing he mentioned pretty much immediately. We had brought the paperwork from my other surgeon- the one who has done all of my feeding tube repairs and my hernia repairs so far, and he looked at the notes and said that there’s no way my hernia was going to heal, because the other surgeon used the wrong type of mesh. This type wasn’t designed for long-term hernia repairs and it shouldn’t be used in a hernia at all, least of all in an Ehlers-Danlos patient. He seemed to know a lot about EDS. It turns out the kind of mesh they used to repair my hernia is supposed to be used to strengthen a row of stitches, but not to repair a hernia. I’m so angry about it. But also so relieved that another surgeon saw the issue pretty much immediately. It makes me so angry because I kept feeling like the doctors in the area I was living just had no clue what they were doing, but since none of them knew what was going on, none of them were catching these mistakes, and I was having way too many surgeries because of it.
I really hope that moving to a place with better doctors is going to be the first step towards less surgeries (even if I need to fix the old one initially. It’s kind of just a relief knowing this isn’t my fault. Because it was so frustrating that I would rest more, and take my supplements, and just- nothing was working! I kept thinking I had to be doing too much too soon or maybe too little or not doing something right, but it was literally doomed to fail. >.<
Anyway, we called the doctor who is supposed to fix my nutritional status, or at least help us get a grip on things and he didn’t have any openings until the end of May! I was so upset about it because that’s literally forever, but Master Pravus and me decided to just focus on the house for now and just take it one day at a time because Rome wasn’t built in a day, and maybe there’d be a cancellation. (We asked to be put on the waiting list because we’re no fools, and we’re absolutely aware that COVID has every doctor backed up…). Anyway, we got a call two days later from the gatroenterologist’s assistant and she said that the surgeon had called and said I need to be seen immediately and it was urgent so now we’re going to be seen in a week! I’m so relieved! Maybe my health is going to finally be on a fast track to getting better. I don’t expect miracles, but it’s still nice to think we don’t have to wait all the way to May to work on my nutrition. I really am relieved.
Unfortunately, while we were fighting with the Insurance to get it to work, we were intending to be looking for a house all of that time, but we weren’t. I couldn’t even sit up let alone get out of the house to house hunt so it didn’t happen. It wasn’t until after the visit with the surgeon that we got a Realtor and started the house-hunting process. Thing is, though- I’m doing OK enough to walk around the room, but not OK enough to go out and look at houses, so I’m helping Master Pravus by looking at places online together, and he’s going to go look at them by himself without me. He hasn’t gotten to that part yet though. He’s still in talks about a few, but none have got to that stage yet.
We are both so eager to have a place of our own again. Not really having a place to live is tough. We are safe, and we do have a roof, but it’s not ours, so it’s just hard on top of everything. We keep meaning to update YouTube and we finally sat down to do it last week but we had a problem last week. Hopefully this week we’ll be able to. 🙂
Last year I just barely managed to squeak by on my yearly goal! I wasn’t sure I was going to make it this year. I don’t always make it, but I’m really proud that I did make it this year. If you’ve ever bought any of my porn, or any of my cosplay items, or even watched a YouTube video then you’re part of why I was able to make my goal and I want to thank you for helping to make my bondage gear dreams come true! I can’t wait until my new armbinder comes in so I can take new pics and videos with it! And in the next week or so I will be updating the Support Me page with a new goal picture and a goal meter so that every month I can update the progress bar on it with how we’re doing. 🙂
A very Happy New Year to everyone out there, and I hope that now that we’re here I’ll be updating more, but hopefully with things about the new house, which I am so excited to be in.. Even if we don’t have it yet! Lol! 🙂
Hugs to all,
Kitty