August 2012
20 posts
11 tags
blah..
Is anyone else on Gilenya have side effects like EXTREME fatigue? cog fog that effects vision, and random tingling in legs and arms, and back and neck pain increase? I took a day off and felt better, but today I feel the same (no…). Gonna take it now. Maybe the symptoms were psychosomatic or the combo of the flare up I’ve been having and the heat on top of everything else? just...
July 2012
33 posts
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I hate that
the thought of not taking my pill tonight feels like a giant rebellion..
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“Pain is inevitable, suffering is optional”
– (via soundnsilence)
don’t hate me but…
BULLSHIT! I CALL BULLSHIT! 10000 TIMES BULLSHIT.
kthxbye.
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Where I sit....
sparklebutonce:
Currently, in bed, with a starbucks. Only typical. (:
Health wise: I’m better than I was before my last hospital visit last week however not as good as I was when I left rehab over two weeks ago.
So Im filled with mixed feelings: I’m happy I’m better but rather discouraged I have regressed…again.
My walking is what seems to be the least affected. I still get around the house...
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I hate calling the doctor's office to remind them...
afroboheme:
I understand it gets busy and I’m not your only patient, but I NEED THIS REFERRAL!! it’s been three weeks of phone calls, voice mails, and a fax… so when I call to follow up, please be nice. It may be annoying, but I need this from you… and the faster it gets done, the longer I’ll leave you alone.
THIS times a million. we’re humans… the illness doesn’t seem to...
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this seems appropriate here...
I’m still alive.. sorta
arnettandpoehler:
remember when I used to make a lot of text posts
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Watchtechnochaun:
“Here’s Johnny” the surreal world of the famous graphic artist Johnny Hicklenton as he battles against Multiple Sclerosis.
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today is drop everything you hold day.
ditto ditto DITTO. ugh.
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Heat, fatigue, and starting gilenya (a very brief...
Been away.. working on getting my life in order (in the downsizing and selling things in the hopes of making some money to pay some bills). On Gilenya day 3 and so far its not so bad. During my first dose monitoring I had an abnormal EKG which had me a little worried.. but aside from added fatigue (hah like thats nothing) and some nausea its manageable.. and a pill.. so hey! woo to that. In...
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Through My Eyes: Frustration & Mood Swings from... →
throughmyeyes17:
For the last couple of days I havae been extremely frustrated. Frustrated with things or I should say BS that life is dishing out right now. Frustrated with my illness. Frustrated with my G.I. doctor because she wont call me back. On top of that, add the mood swings that prednisone gives you and…
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and in MS news...
droppedthreads:
it fucking blows. i’ve had a chest cold for over a week now. a bad one. it hasn’t stopped me from really doing too much, but whatever. it’s still wretched. today i dedicated myself to laying in the sun because i believe vitamin d will cure me - and then, of course, i get overheated and my legs fuck up and my good eye goes all cloudy and i can barely see. motherfucking fuck....
6 tags
kalany:
Dear Brain:
I know you hate that moment when the drugs are kicking in but not fully deployed.
However, I’m pretty sure there aren’t actually ants with intermittently working cloaking devices crawling on me. Please quit trying to convince me there are.
Also, the size wobbliness? Not cool. Have you seen the bruise you gave us last night when you got confused by how big the doorway was...
12 tags
Burbling blind
a-husband-for-a-carer:
Friday night/Saturday morning - 00:35.
I usually take my time over these posts, making sure they make sense before letting them out “in the wild”. I’m pretty self-critical - no, actually, I’m extremely self-critical - and this extends to writing posts. I try not to depress the shit out of you, gentle reader - or me, for that matter. I also try and make sure I’ve got...
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A Day Full Of Challenges
aroundwiththehound:
Yesterday I had to make an outing. In the middle of a crash. I needed to run out and sign some legal documents, but I knew I shouldn’t be leaving the home. My fever, nausea, pain, and other symptoms had been flaring as my body struggled to recover from the energy exerted during my friend’s visit. But I had to go, so I leashed up DeeDee and headed out the door.
My view with...
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such-beautiful-shirts:
How selfish of me is it to be happy that Jack Osbourne has been diagnosed with multiple sclerosis? I can’t help but think that, with that family’s influence and wealth, M.S. awareness will be raised greatly, and my mom can benefit from it since she also has M.S. I’m not happy he has been diagnosed, but I am a little grateful he has been because that disease passes by...
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Tired
sparklebutonce:
One of the symptoms of MS is fatigue.
Definitely feeling that one today.
Had last date with plasma exchange. It was a bittersweet break-up but we knew it was best to discontinue.
Dad was able to come and experience some of my therapy this morning. I have been walking well with my forearm crutches, today 350 feet. These will mostly be used for around the house and short visits....
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MS affects us all →
sparklebutonce:
Please watch and share this video. It’s a great MS awareness piece.
Hope for a cure!!
Thank you!! (:
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eliza-bitch:
Dear Copaxone,
Thank you for making me feel more entitled to be a bitch. However, you’re very rude for burning so, so badly.
Yours truly, Liz
::: glares at copaxone::: Leave her alone. you have to insert yourself into ppl daily, sting, and you don’t even always keep flare ups away! Who said you could be so controlling? And btw…You failed me & now...
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Heat & Temperature Sensitivity For People w/MS →
Yep. Eyesight has been coming and going since summer got hot as hell.. makes the balance issues, limb failure, etc even more sucky. bruises are like tattoos these days.
voiceswithoutfaces:
Many people with MS experience a temporary worsening of their symptoms when the weather is very hot or humid or they run a fever, sunbathe, get overheated from exercise, or take very hot showers or baths....
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MS tried to steal my freedom
sparklebutonce:
Its the 4th of july. A day of fun, boomers, picnics, and pools
Mine was planned wonderfully. Pool therapy with my family, watching the parent vs kids swim meet, date with the bf and fireworks (my ultimate favorite).
MS had different plans.
At the pool I overheated. When this happens for people with ms, it slows down the nerve connections even more than usual, causing your...
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Please Read.
loselips-sinkships:
When I was 10 or 11 years old my mother was diagnosed with Multiple Sclerosis (MS). MS is a chronic, often disabling disease that attacks the central nervous system, which is made up of the brain, spinal cord, and optic nerves. Over the years my mother has experienced a few complications. At one point she was not able to see through her left eye and has also experienced...
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So I got the "you have MS" talk from my doctor
watchmefallnow:
I’ve had a lot of the symptoms and no real answer. Now I have the answer.. And I wish I didn’t. But, maybe that means there will be a medicine that will make me feel better..
It might, and regardless it means you have stuff to learn, a path to walk down, and a huge group of amazing people on tumblr whose struggles and successes inspire me all the time. i’m sure...
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pepperminteyecandy:
Does anyone else with MS get headaches/migraines that come on at a certain point almost every day? What do you do about it? I can only assume that it’s MS related and possibly a new lesion after I was sick with the flu but urgh, I’m fucking sick of this shit.
I get this. I sort of think of it like an MS hug of the head.. For me it also works with...
