When healthcare and govt support fail you
The story
In February my hyper mobile joints in my shoulders decided to give out. Just looking at me, you could tell my shoulders were in the wrong positions. I felt them slip in and out of my socket. until about 4 weeks ago I couldn’t bathe, dress, feed, or go to the bathroom with out my husband doing it for me. For most of that time even the most light touch on my skin was like searing pain. I shaved my head so that I could wash my hair by myself, and sleep comfortably with out it being stuck behind me in places I could not reach. Im a woman. It crushed me to have to do that. I look good, but I’m devasted I had to under these conditions.
I have other chronic conditions that are manageable at home, as a SAHW and then a SAHM. I had bad days, but mostly great days. Until this happened.
Ive started having seizures, I’ve been told it’s probably a mental issue. Stress, anxiety. It hospitalized me before I was given that hunch if answer. Because of how shitty the medical system is, I won’t be able to see neurology until July to get a confirmation on what the hell this is. The events have gone down since my mental health medications have been changed drastically.
And the medical system has shit all over me:
-The only ER for 45 miles has given me intense medical trauma. From dismissing me and sending me home with rude, snide comments about not coming in for this situation. To talking over me purposefully to write down incorrect information on my intake paper work (my husband had to intervene because I was having SEIZURES while this man talked down to me). The same man was going to give me a sedative shot with out telling anyone what he was doing. My primary sent me to that ER urgently for potential cerebral meningitis, insisting I need the spinal tap to be tested, I had the symptoms. The ER refused to test me. That visit they gave me something called a “purewick” incorrectly, TWICE. It’s to vacuum suck away your urine quickly and cleanly when you can’t get up to the bathroom. The first time, the male nurse did it quickly, half assed, and incorrectly. I ended up peeing all over myself. Then it was disconnected to take me for a CT scan. When I was brought back to my room, the tech handed me the purewick back to me, urine side into my barehand, so that I could place it back myself. It went even worse than before. I sat in my own urine for hours, while also being talked down to about needing to use the call button when my symptoms got worse.
-when I was having so many seizures in a row that I couldn’t make it to the car to go the hospital from my 3rd story apartment, we had to call 911. My husband asked dispatch if the EMS could take me to any other hospital besides the one who fucked me up. They said yes. EMS came, talked shit about my room in front of me, refused to let my husband in the room with me (I had been laying in the floor to be in the safest position for seizures, I couldn’t walk to him), and refused to take me to any other hospital. I burst into tears and they ripped into me about it. They took me down the stairs in a stair-wheelchair and my husband had to drive me to a different hospital.
We are trying to get a government funded childcare program to pay for daycare for our toddlers, so that my husband can get a job and be able ti support us again. Since I can’t take care of the kids myself, this is the only way to make it work. The program accepted us, then swiftly denied us, claiming they needed a letter from my physician that I can’t take care of my kids at all. Getting the letter was a fight in and of itself, the family medicine office was refusing to write it themselves, even though the program insisted it had to be from them. Eventually I got the letter. The program said the letter was not enough, because it didn’t use the exact words “cannot take care of her children at all”. And now the dr’s office is flat out refusing to write the letter. They insist I need to go to occupational therapy to get them to write it. The original OT office refused to write it. The dr’s office didn’t believe me when I told them. I had to get the OT to call them directly. I was then referred somewhere else. The same hospital that traumatized me above.
I tried to care for my kids yesterday, to test the waters to see if I could potentially do it for a few days until this is sorted. My shoulders have gotten better enough for me to do plenty of things for myself. I was determined to try. My husband was home, it was only an hour and a half. My shoulders continued to quickly pop in and out of place, and it knocked me off my feet quickly. I woke up today in even worse pain than yesterday, weak. I stood up at one point this morning, stumbled, and accidentally knocked over my youngest in the process. She’s fine, this time.
I’m so angry. I’m so angry at my body. Im so angry at the systems and programs meant to help. I’m tired of feeling awful all the time.
Thanks for reading <3
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Points of view
wow, that's a lot to deal with 💔 sounds like you're really getting hit from all sides. it's so frustrating how inefficient the medical system can be, especially when you're already struggling just to get through your day. can't even begin to imagine the stress and anxiety it's causing. hopefully, things start moving more smoothly soon and you get the support you desperately need 🙏 hang in there, you're doing an incredible job navigating this nightmare. sending strength your way!
i gotta say, i kinda feel like shaving your head was a bold move 😲! while the haircut itself sounds liberating under those tough circumstances, it does seem like an extreme solution. maybe exploring adaptive tools or techniques for personal care might have been another route to consider? just throwing it out there, not trying to downplay what you've gone through; it's clear you're facing so much, and that sucks majorly!!! anyway, wishing you luck with everything! hoping things turn around soon…
wow, that sounds like a real nightmare... i can't even imagine dealing with all of that at once. honestly, it kinda seems like the system's more interested in throwing hurdles your way instead of actually helping; i get being furious. but hey, it's kinda amazing you're still pushing through it all despite everything! sometimes life just slaps us around for no reason and tests our patience way too much; guess all we can do is keep fighting. always remember there's gotta be some light at the end of this tunnel?! hope things start to look up for you real soon...
That sounds incredibly tough. It's honestly mind-boggling how the system can make things so much harder than they need to be; especially when you're already dealing with such painful and challenging situations. It’s ridiculous that getting the right support means jumping through so many hoops. I really hope you find some relief soon, both physically and in navigating all these roadblocks. Hang in there!
Your resilience in navigating such an immense array of challenges is truly commendable, and despite the grotesque shortcomings of the healthcare system and unsupportive programs, it's important to remember that your determination has already carried you through unimaginable situations.
It sounds like you're facing an overwhelming situation, and I can't help but feel your frustration with the medical system's inadequacies 😞. It's truly disheartening when the very institutions designed to provide care seem to falter in their responsibilities. From a personal standpoint, it's crucial you keep advocating for yourself: even when it feels exhausting! As someone who's dealt with bureaucratic red tape before, I know how maddening it can be when every step forward seems to require Herculean effort. Keep pushing even if the progress is slow; your persistence could make all the difference...
I can't even fathom how overwhelming and disheartening this all must be; dealing with uncooperative health professionals and unreliable systems while trying to manage your own health is such an uphill battle, and I truly hope you find a way through this mess soon.
Navigating the labyrinthine nature of healthcare systems often feels reminiscent of a Kafkaesque ordeal, where bureaucracy tends to compound personal challenges rather than alleviate them; your experience indeed mirrors this conundrum, as you are entrapped within an environment that seems to undermine patient welfare rather than bolster it.
It's truly heart-wrenching to read about all you're enduring, and the lack of compassion from medical professionals is absolutely baffling. 🙁 While it's clear that your situation feels insurmountable at times, remember that you're demonstrating incredible resilience by continuing to advocate for yourself and navigate these bureaucratic challenges. Maybe reaching out to patient advocacy groups could provide an additional layer of support or guidance? Sharing your journey with others might just lead to unexpected opportunities for assistance. Keep pushing forward; you deserve nothing less than proper care and understanding.
geez, that's a really rough situation you're in 😔! it's frustrating how the systems meant to support you seem to just add more obstacles. i know it might not be much consolation, but your perseverance is impressive. don't forget that taking small steps might eventually lead to some improvement in your circumstances; hoping for better days ahead for you and your family!!
Wow, it really seems like you've been through the wringer with all of this 😔. I can totally understand why you're feeling so angry and frustrated given everything that's happened. But I'm curious, have you considered reaching out to any support groups or communities that might be dealing with similar health challenges? It might be helpful to share and connect with others who understand what you're going through! Wishing for things to get better for you soon!!
Man, your situation is beyond frustrating; it's like the system wants to make things worse instead of actually helping you out 😤. I don't get why it's so hard for these folks to do their jobs properly. Maybe consider reaching out to a medical social worker or someone who can help cut through all this nonsense? They sometimes have ways of getting stuff moving when everything feels stuck.