#myopathie

[burythecarnival]

i am so tired of this fucking pain. and feeling like i have a respiratory infection & the flu every single fucking day of my life. this is no way to live. even while i lie here as still as can be, tears will slowly flow from my eyes & the tears feel like boiling water on my skin. i grew up in a stoic irish family where you handle. your. shit. but, i have learned that bottling emotions is toxic & i am trying to get better at "sharing."

my sleep has been plagued with nightmares stemming from my pain of having limbs amputated, being stabbed, being burned etc. my sleep is terrible, i am not eating substantial meals & just feel alone even when people are around.

if you made it this far, bless your sweet face. i appreciate those of you who check on me. if you want to help me with meals & a couple of my prescriptions this week, it is of course incredibly appreciated.

cashapp: $dryboneslive / venmo: dryboneslive

luv, cuddles & cauldron bubbles, the ghost queen 👻

[briarpatch-kids]

I'm still in happy awe of my new physical therapist who asked what *I* wanted to get out of physical therapy verses just trying to "get better"

More physical therapists should do that, huge W right there.

[five-thousand-loaves-of-bread]

shooting “qualifying diagnosis” down with thousand laser beams

[bpod-bpod]

Subject to Contract

Fine details of the protein complex that underlies how an electrical signal effects muscle cell contraction revealed and sheds light on mechanisms of myopathy (muscle disease)

Read the published research paper here

Image from a video from work by Eline Lemerle and colleagues

Institut de Myologie, Sorbonne Université, INSERM, Paris, France

Video originally published with a Creative Commons Attribution 4.0 International (CC BY 4.0)

Published in eLife, April 2023

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[allosaurusrock]

I kind of am tired of those posts that say things along the lines of “you’re so young! You have all this life ahead of you! Think about what you will get to enjoy in the next 50 years!” Because… that’s not my life. Like, obviously I am happy for those that those posts are helpful to, and some things are just Not For Me and I respect that. But it still makes me sad to see posts that talk about how your life is still barely started in your 20s and 30s because that is not the case for me. My life is ending in my twenties. Maybe not in an actual, ‘I’m going to die’ sort of way (although I might, we just don’t know how unpredictable my body can be), but I have a severe muscular dystrophy. Almost everything I have enjoyed my whole life is becoming or has becoming inaccessible for me. I had to get rid of so many of my animals, I can’t really ride or take care of horses anymore, I lost both of my jobs that I loved, I can barely walk. My favorite stores are not accessible by wheelchair. I cannot be upright long enough to bake myself that “easy! Enjoy your life” loaf of bread, or cook myself fresh food. My diet is almost entirely microwaved. I cannot take myself on a walk for my mental health. I have to accept that soon I will not be able to walk at all anymore, to draw at all anymore, to sew, to dance, to sing. My vision is double and so watching tv is hard for me. It’s getting hard to hold up my handheld video games or my iPad. Eventually, I will not be able to turn myself over in bed and will need someone to rotate me every few hours, to help me use the bathroom, to bathe me. This post isn’t to say “Don’t make happy, encouraging posts” anymore but really more a vent. Maybe saying “other people will have different experiences.” You cannot act like everyone has the ability to better their life and look forward for the future. My body prohibits it.

[big-tees-and-short-skirts]

i cant believe i have a congenital muscular disease. my titin proteins are wrong. thats what my problem is. what da hell.

[mrfancyfoot]

First treatment's (methotrexate) been deemed a dud after 2 weeks. :( It's frustrating but I'm glad my doctor listened to me when I said the insane brain fog I got from it was completely unacceptable as a side effect (it's a huge reason for why I haven't been able to work on anything all month 😑 and it's started impacting work-work now). Though it might be the sudden blurry vision that tipped it. The fatigue/exhaustion has been unreal. It's crazy how things can affect your brain so much. Finally stepping down the prednisone, too, so here's hoping those side effects lighten up.

I think they're having me try Imuran next? Another visit for bloodwork first...

[horsesarecreatures]

I’ve been seeing posts about horses displaying EDM symptoms and being euthanized for behavioral issues everywhere recently. It’s horrible how under-suspected it is. 

Remember, if a horse has erratic behavior, violent or explosive behavior, or trouble going up or down hills, these are all common symptoms and a nuero issue shouldn't be ruled out even if a horse comes back negative for epm/lyme/pssm/wobblers etc. 

[symbiosisonlinepublishing]

Some of the most common neurological disorders include:

Stroke: A stroke is a sudden loss of brain function caused by a blood clot or bleeding in the brain.

Multiple sclerosis: Multiple sclerosis is a chronic disease that affects the central nervous system. It is characterized by inflammation and damage to the myelin sheath, which is a protective layer that surrounds nerve fibers.

Visit: https://symbiosisonlinepublishing.com/neurology/

[unkillability]

fawn that got stuck in my yard the other day

[burythecarnival]

*kitty stretch & yawn* ooh, it is a beautiful day to tell me that i am haunting & send me monies 💁‍♀️😉

but seriously, i had a really rough fucking night. lots of pain, lots of nightmares. i am going to try to get groceries today as well as a couple of my prescriptions plus (hopefully) a new heaty pad & arthritis gloves.

any help is immensely appreciated. for realsies 🖤

cashapp: $dryboneslive / venmo: dryboneslive

paypal: message me for email

luv, cuddles & cauldron bubbles, the ghost queen 👻

[briarpatch-kids]

Oh shit happy 2 year anniversary to the time I got misdiagnosed with "even if you go to the Mayo Clinic or one of the other big experimental university hospitals they probably won't be able to figure you out."

One month later, I found out they misinterpreted my muscle biopsy results and I actually had mitochondrial myopathy, a type of muscular dystrophy/neuromuscular disease, so I basically got the meanest April Fool's prank ever by the universe.

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