medical trauma/losing baseline
hey everyone-needing a place to vent, maybe look for advice, I don’t know at this point, I’m just really going through it
I’m really struggling right now, and just want to feel better. I feel so upset, and am dealing with a lot of medical trauma now because of this condition, and I just don’t know what to do
okay, small backstory-I moved to a different province a few years ago, was in fantastic health when I had moved so didn’t prioritize getting on a list for a family doctor, got on the list last-ish year (maybe slightly beforehand) and may now have to wait five years to get a family doctor, and that’s not including the ENDLESS stories of it taking up to ten years for some people (we have an extreme doctor shortage here). We also have a SINGLE walk-in clinic here that you usually have to wait anywhere from 30-45 on hold to book an appointment, and they have NO experience with complex disorders. i did have to go into this clinic to have them send me a referral to a cardiologist, one that I am STILL waiting to see almost a year later🫠
with that out of the way, last year, around this EXACT time actually, I got a cold and just never got better, and started to develop dysautonomia type symptoms. I spent MONTHS in and out of emergency, and all of the doctors thus far have stated that they feel my heart is structurally sound, however my autonomic nervous system is faulty and sending incorrect signals to the rest of my body. I hate being at the hospital alone, but I have younger kids and don’t want them chilling in a hospital with me for hours at a time, so I have my partner and kids drop me off and then pick me up after. I have SO much trauma from just like, having doctors see my heart rate and blood pressure and essentially stripping me down in triage and run to a room to get me attached to an EKG immediately, having all medical staff just kind of eyeball me and you can see that they are internally freaking out and I literally feel almost sick thinking about it. last year at this time I became couch/bed ridden, was borderline unable to eat or keep things down, had really spiralling blood pressure, bouts of hypothermia, the shakes and chills, insomnia, developed a fear of falling asleep, was in a deep depression that was riddled with adrenaline, panic and anxiety and an impending sense of doom-it was really bad.
finally got medicated, started to find some relief, and slowly built up a baseline. i might not have been able to go for runs and workout like I used to, but I could go on walks, I was able to get back into a solid cleaning routine around the house, cook, felt pretty independent and was finally starting to accept this new reality. I did have horrible flares around my period, but over time also came to accept that as my normal and was able to recognize the pattern and it wasn’t debilitating to my overall life.
Jump forward to this past month. I have had a cough on and off, and What I suspect to be borderline chronic bronchitis for the duration of the winter, it’s been tough. This past week however, I have been feeling incredibly off. My period isn’t due until the end of the month, I feel like my heart is skipping beats, my chest feels SO uncomfortable, and I just do not feel well. Finally went to the er on Tuesday and they did the usual-blood work, EKG, chest x-ray. usually I pass all of this with flying colours (lol) but this time, my d-dimer was slightly elevated, and because of that, they wanted to admit me overnight, give me a blood thinner, and then a cat scan in the morning. The blood thinner was a needle to the stomach, hurt so much more than I anticipated, but the scan came back clear (as the doctors had anticipated that it would) so i was sent home.
i still feel awful, had an adrenaline dump last night (first one in MONTHS, because i am on propranolol i think that’s what stopped it from being as aggressive as it used to be but it was still really bad), and slept for almost the whole day when i got home, still went to bed early last night and slept the whole night after the adrenaline dump.
my stomach is so bruised, i still feel awful, i just don’t know how to trust my body anymore and feel very much like im going back to square one. Nobody is prioritizing my condition, and It just really sucks. I feel scared because the test results showed elevated d-dimer and I feel so off, but I was sent home so like??? Just feeling every level of scared, frustrated, and sad, you know?
my partner offered to call an ambulance last night but I declined because I just got back from the hospital, and everyone told me I’m fine so now I’m worried that I’m just being an annoying patient if I keep going back, you know? Just feeling so awful about all of this. my place is starting to fall back into disorder because we’ve been so busy managing the kids and then me feeling like this, and I’m just scared I’ve now lost my baseline again