Chronicles of Life with Multiple Sclerosis
wholegrainlofat is in the ER with a horrible migraine. Being the good friend I am, I’m showing my support via text message.
Inter-Spoonie friendships are the best friendships. <3
So last night I had this conversation with wholegrainlofat. Clearly I craft my conversational style to resemble what I like to hear when I’m in this position.
Not a rockstar.
Not a superhero.
Not anything but some girl who is fed up with losing people she loves to this fucking disease.
Fuck the “omas”
Fuck the “itis”
Fuck chronic diseases.
Fuck the autoimmune diseases.
Fuck them all. I’m sick and tired of not seeing cures or treatments or remission across the board.
"I love waiting on hold with Social Security!"
-said no one ever
Stigma can stunt recovery. People can feel forced to internalize their issues and stay quiet about them because they are afraid of being judged. Let’s fight the stigma so that more people feel comfortable speaking out and getting treatment.
- Myelin sheath and conducting pathways of CNS
- Inflammation of the WHITE MATTER - tracts that connect brain to spinal cord
- Remission and flares
- Relapsing, remitting MS 90%
- Progressive is 10%
- PROGRESSIVE TO PERMANENT
- DAMAGED MYELIN and exposed fiber and nerve affected by MS
Diagnosis done by:
- MRI visualization of patches of destroyed myelin
- Nerve conduction tests
- Rule out other diseases
- NEWER MRI techniques may help with diagnosing multiple sclerosis they include
- MRS: magnetic resonance spectroscopy, this provides information about the brains biochemistry M
- MTI: magnetic transfer imaging can detect abnormalities before lesions are visible
- Diffusion tensor imaging DTI: this technology provides 3d images of demyelinated areas of the brain which are useful in determing disease progression
- FUNCTIONAL MRI: this is used during cognitive performance tests
- Age 20-40
- Temporate climates, BEING CAUCASION.
- Women are 2-3 times more likely
- Signs and symptoms of multiple sclerosis
- Blurred/double vision
- Muscle weakness, spasticity
- Fatigue, tremors, paresthesias, ataxia
- Bowel and bladder: failure to empty and store
- Cognitive changes: memory and attention
- Sexual dysfunction: erection, fatigue and psych
- Beta interferons
- Synthetic form of myelin
- Immunosuppressive treatment
- Monoclonal antibodies
HOLIDAY SUPPORT GROUPS:
Thanksgiving Day, Christmas Eve Day, Christmas Day, New Year’s Eve Day and New Year’s Day
11AM Pacific Time, 10AM Mountain time, 9AM Central time, 8AM Eastern time
The call number is 1-800-977-8002
and the participant code you will be asked to enter is 5429554#.
These Call-in Support Groups are for anyone who needs to hear an encouraging word during these stressful times.
More Info on the Support Group Page.
" I was misdiagnosed with lupus for years before the doctors figured out it was really MS."
Having a bit of an anxiety attack about my ssi review tomorrow morning. Should be asleep since the call could come anytime between 8am and 12:45pm but couldn’t sleep. Decided to look through my pictures on flickr and found a set of Zoya pics I hadn’t seen in a while.
Here’s a picture of young zoya, before she started hating her baths, and was still small enough to sit in my hand comfortably. She didn’t seem so tiny then but looking at her now, sleeping in her terrarium, she’s grown so much :)
Anyway, Just thought I’d share this picture. It filled me with so much love and calmed me down enough I think I may get to sleep soon. People question the power of non traditional support animals, but this is one of many examples from my life that shows how impactful she is on my overall wellbeing. How she helps get me through stress, sadness, bad health days, gives me a reason to get up in the morning, keeps me motivated.
These are random thoughts now, but hopefully soon to be a well written argument in support of animals for those with chronic illnesses.