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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