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Well! I officially have the diagnosis that answers all of the questions that I’ve had for years. Even though my doctor was a bit brusque about the whole ordeal, she at least listened to what I was saying and took it at face value. (Which, unfortunately, is more than I can say for pretty much every other doctor I’ve ever seen!) Oh, and I also had to go to the hospital because I ended up getting hit by a truck with no license plates. So, I’ve been a bit MIA for that reason as well. 😅
I also ended up coming clean to my boyfriend- not about being into omo, but at least partially into my issues with still wetting the bed. He didn’t say anything negative about it, but he hasn’t brought it up since. Maybe that’s a good thing. I am still embarrassed about it, after all. But it also makes me think that he’s a little grossed out by it, even if he’s not saying it.
Anyways, all that aside, I’ve been feeling the urge to write something for me to share here. My previous writings are all extremely self indulgent pieces of fanfiction. I’m not sure how comfortable I am with sharing them for other people’s consumption. So, I’m currently in the process of working on original characters and plot lines. Some people might say that I'm putting a lot of effort into something that’s primarily going to be kink-related, but I’d like to think that I am simply doing my proper due diligence as a writer. The next time I log in, it will be to post some writing that I feel meets my standards to be shared with others!
I hope everyone has a warm, wonderful holiday! Stay safe out there!
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Good evening everyone and happy holidays to all those who celebrate! I am currently with my boyfriend at his mom’s house for the holiday. I also have an update of the medical variety! (Not sure if anyone necessarily cares about my health problems, but I do, so I’m going to talk about them.)
So, as previously mentioned, I’ve always had a lot of health issues. The urinary problems are a small part of the bigger picture- a picture I’ve been trying to piece together for years now entirely on my own. As a kid, I was very accident prone. I was always falling and dropping things, and I remember frequently coming home from school with stains on my clothing that I had clumsily acquired throughout the day, much to the frustration of the woman raising me. (I wasn’t allowed to drink chocolate milk, play with paint, or run in the grass, lest my fine motor skills failed me.)
It got to the point that she took me to a children’s hospital, where they did some initial intake and assessments. I do not remember most of these visits, since this was when I was five or six. Apparently, at the time the doctors had suggested that I might have muscular dystrophy and recommended that I should perhaps get a wheelchair. My “parents” both balked at the idea. They wanted me to have a normal life, they said. Then, when the idea of more testing was brought up, they stopped bringing me and said that they could not afford any more testing. After the man who I believed to be my father died, his wife stopped taking me to doctor appointments pretty much all together unless she absolutely had to. My poor vision went untreated for years, leaving me squinting to see in all of my classes. My chronic pain was invalidated, as was my constant fatigue. Waking up with random bruises, spasming in my hands and feet, a numbness so intense it caused me to actually cry out in pain when I’d feel it stabbing my feet, and an awkward gait were all ignored due to my age. She was convinced that I was a hypochondriac.
The past five years since I moved out have been filled with doctor’s appointments and blood work. When labs come back normal, all of my concerns were dismissed as psychosomatic or a result of my weight. It got to a point where I even started to believe that they were right- that my pain was all inside of my head, and I just needed to suck it up and push through it anyways. So that’s what I did. It turned out that it was very real.
Thankfully, I have recently come into a position where I now have relatively easy access to health care with progressive, well-educated professionals. During my first visit with my current provider, I was nervous. I came prepared with a list of things to go over. Around the same time, I became aware of a condition that could very likely be the root cause of all of my health problems: Ehlers-Danlos Syndrome. It’s a condition that weakens the collagen in your body. It’s marked by soft, stretchy skin that’s more susceptible to breakage and joint instability. It can impact your vision, your level of mobility, your teeth, your skin, your bowels and bladder, and even your brain. (There seems to be overlap between EDS and neurodivergence, and I have come to realize in the past year or so that I am in fact autistic.) Unfortunately, it’s a condition that a lot of people don’t know much about, including health care professionals. So, I was unsure about bringing up my suspicion to my doctor due to that and my prior experiences with medical gaslighting.
A few days ago I finally gathered up the courage to broach the subject. I sent my doctor a message, explaining that I am currently seeking genetic counseling and also a disability case since it does impact my ability to work. I also sent her the paperwork I had been sent that went over all of the symptoms I had that could be explained by EDS, or one of it’s other subtypes, hEDS. The H standing for hypermobile. I’m also seeing a physical therapist for a shoulder injury, and she confirmed for me that I am hypermobile, which was the final push I needed to talk to my doctor. I have an appointment on the 12th next month to go over the possibility more in detail. I’m extremely grateful for that. At long last, after so many years of suffering and wondering what’s wrong with me, I may finally have an answer for it.
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Getting an extra hour of sleep is nice, but the problem with it getting dark so early in the evening means I’m falling asleep by 10:00 most nights.
This on its own would be fine. However, it becomes a problem when I’m waking up like I did this morning. My phone had fallen off of my bed in the night, so I couldn’t see what time it was, but it was still pitch black in the room. As I attempted to readjust and fall back asleep, I felt that all too familiar wetness underneath me. My hand reached down and pressed into the mattress, and sure enough, it was thoroughly soaked. Moreso than usual when I wake up in the middle of the night, too. Typically I can write it off as me leaking in the night, but this time I had undoubtably peed myself in my sleep.
Shit.
Careful to not wake my boyfriend up, I sat up and got out of bed to search for a towel. I grabbed one off the floor and quickly shuffled back into the bedroom, placing the towel on the mattress to give me a dry place to lay for the rest of the night. My boyfriend turned over when he felt me crawl back into bed on top of the towel, and for a second I thought he’d seen. Thankfully, this seems to not be the case, because he continued to snore and I fell back asleep with relative ease.
Now he’s off at work, and I’m going to try to get the pee smell out of the mattress before he gets home later because I think I only have plausible deniability when he’s groggy and it’s pitch black in the apartment. 😅
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For the past few weeks, I’ve been donating my plasma for a bit of extra cash. I go twice a week, and it’s always at least a two hour long process. You go in, answer some questions on a kiosk, wait in line to have your hematocrit and protein levels taken alongside your blood pressure, and then as long as you don’t run into any issues, you can go straight to the donation floor. From there they swab you down with iodine, mark where they’re going to stick the needle, and then hook you up. Then the machine that separates the plasma from your red blood cells starts, and you’re good to go!
If you’re well hydrated, you can be done in half an hour. So, the first time I went I drank 60 oz of ice cold water before I went in and had a Gatorade that was provided to me by the center. (I had to go to the bathroom twice before I got down to the donation floor.) I got hooked up to the machine and started squeezing my hand to aid the blood flow, and after about five minutes, I started to feel a very light pressure in my bladder.
Still, I kept squeezing my hand and awkwardly crossing, then uncrossing my legs. The beds that they have lay back on were starting to fill up with more people. As the pressure I was feeling increased, so did my panic. I desperately hoped no one could tell that I was trying really hard not to wet myself. The part that made it even worse is that I didn’t have my headphones with me, so I couldn’t even listen to music to distract myself from the discomfort I was feeling. Discomfort that was rapidly turning into pain.
Eventually it started to become too much. I had finished the process of giving the machine my blood, and now it was returning my red blood cells to me. I was frantically looking back and forth at the machine, waiting for it to stop, but it seemed like it wouldn’t. With tears pricking in the corners of my eyes, I could feel myself leak ever so slightly into the pull-up I was wearing. It was at this point that I, embarrassed, had to flag down a worker.
“Please, I really need to go to the bathroom,” I told her, as quietly as I possibly could. I was grateful to be wearing a mask, so that no one could see how red I was, or how much effort I was actually exerting in that moment. The worker looked over at the machine, then back at me.
”If I unhook you, you’re going to lose red blood cells. Are you sure? If it happens again, you’ll get deferred for 60 days.”
I nodded my head. I couldn’t even say anything. I tensed up as tight as I could as she unhooked me and wrapped my arm. Then she informed me that she would have to come with me. I didn’t have it in me to be embarrassed about it; every nerve in my body was screaming at me and I seriously thought I was going to end up soaking my pants through my pull-up in front of at least ten or fifteen people.
Mercifully, I did make it in time. (And by made it in time, I mean the pull up took the brunt of the damage and it didn’t leak.) I nearly cried tears of relief in the bathroom stall. I washed my hands, and the worker took me back to my bed to monitor me for 15 minutes since I lost red blood cells.
I’ve donated a few more times since then without incident. I decided to not drink as much water the next couple of times I went in. I also went in today, and I don’t think I drank that much, but I was maybe a quarter of a way done with the process when I felt the need to pee. My first thought was, “oh, not this shit again.” Today I wasn’t even wearing a pull-up because I ran out. I couldn’t afford to lose much control without giving myself away. So, for the next half hour, I crossed my legs and tensed with every wave that washed over me. Occasionally my eyes would water from the sheer need. Thankfully this time I did have headphones, which helped distract me enough until the machine started to return my blood cells to me. It was at this point that it was almost unbearable. I couldn’t flag down another worker and have them unhook me, though, so I sat there, twisting in discomfort. A few small spurts escaped me and once again, I thought for sure I was going to end up losing it all.
Finally, I was done. A pretty worker came up to me with a smile on her face. Originally, I was planning on subtly dropping the fact that I needed to be unhooked quickly to go to the bathroom, but the embarrassment kicked in and I made small talk with her as she wrapped my arm. After she left, I reached back to make sure that I hadn’t peed enough to stain the back of my pants, then jumped out of the bed and shuffled as quickly as I could to the bathroom. I pushed open the stall door and fumbled with the button on my pants and the lock on the door, yanked my pants down, dribbling a little more into my underwear but holding it together just enough until I was hovering over the toilet seat. Once again, I had narrowly avoided humiliating myself.
Hopefully the next time I donate, I don’t run into this problem again. Everyone there seems very nice, but I don’t want to have an accident and then be known as the donor that pissed herself. At least I don’t think I do.