Neurofibromatosis - Tumblr Posts
Standard warning I will be posting about my NF1 issues a lot on this blog. Since 2011 Ive had spine/neck surgery, 10+ Knee surgeries on my right leg. I have stenosis. I cant play music anymore, I cant work. Im in constant pain and my state wont give me decent pain meds.
It is a struggle, and sometimes I dont want to struggle anymore
God, I want this pain to stop. All I do now is sleep and barely eat.
Today is a day I want people to please do research and look up Neurofibromatosis type 1 aka NF1. As a rare genetic disorder it needs to be seen more and this is a good day for this message. Today is International Disability Day. Please take time to learn about this
Went into shock(?) Last night. Super bad pain spike. Been stuck in bed all day. Barely can walk to the restroom.
If a hosptial could sedate me for a day or 2 from my pain id do in a heartbeat. Im fucking dying here.
On another note, i think i should be able to get tattoos again after my neck surgery and i have ideas.
Sucks that its only March and I:
Experienced a friends suicide
Need money
Had galbladder surgery
Blew my knee out/may need my 21st knee surgery
Cousin is in ICU.
Liver is being fucky
Need 2 brain scans.
Im tired
Eh gonna go back to bed. I miss feeling wanted by multiple people. Im tired of slowing people down and wasting away in my house.
Ive had over 20 knee and leg procedures on my right leg since 2011. I have missing nerves in my foot amd ankle. My knee is fucked. My right calf is permantly butterflied. I want them to amp my leg above my knee at this point. But no doctor wants to. The pain goes from sore to boarderline su*c*dal. Im so tired. They said i need a knee replacement. Im not even 30 yet.
Tired of being told i look "too Masc" to be in trans spaces. Tired of being ignored for being a amab non binary person who "isnt angrodyonisi enough". It makes me feel like shit cause I cant transition or my genetic disorder could kill me. My body is already fucked up. Im tired of life. I have friends i miss who ghost me or have a lot going on where they simply dont have the time (i dont fault them for that. Lifea hard) i miss my support network.
God nerfed me with disabilites and not being able to transition because they know if i could id be so powerful nothinf would stop me. Instead im stuck at home lonely and smoking weed 🤙🏻
At what point does lack of care become malpractice and basically telling me to go fuck myself?
I dont think i can describe the leg pain besides the options of:
1.Surgery Now
2.Cutting it off myself
3.Pain meds
Or
4.Dying.
Fucking relatable
You know what sucks about having a rare ilness/genetic condition?
(aside from the obvious of course)
But...
Doctors visits..
You go to a regular doctor, and you're the first person with that condition they've ever seen.
Sure, they've heard about it, but it was only a side note during their medical studies...
And then you go to a specialist and you're just "one of many"
Last time the specialist said my case was "not that bad" and basically implied that I had no real reason to be there.
That really sucked.
Yes, It could be worse, but I still have my struggles, and I just want to talk about it.
To be understood.
I have never met another person with that condition.
Makes me feel like an alien.
Too much for a regular doctor.
Not enough for the specialist.
I hate it
Sure do hate my NF1. Not only do i have brown splotches all over, im covered in these cherry Fibromas. That have gotten worse and appear more now. Super self concious. Amd its too hot to wear sleeves and jeans here constantly.
Love my body not being able to HRT or not being able to handle elective surgeries. Whater suffer in silence i guess
Need gender affirming art :/
Sucks not many people understand.
So many pretty and hot trans people that i follow are so goals and cute and cool. Sucks HRT could legit kill me.
I need older disabled queer friends who can tell me itll be okay
Wishing for the brain worms to do their job and eat the rest of it so i dont feel dysmorphia and hate myself and feel pain 24/7