May 2012
46 posts
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Life Lessons Learned from being temporarily... →
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I was going to just skip my inject tonight.
dreamysaturn:
But then I imagined Eunice giving me disapproving glares about it.
EUNICE HAS INVADED MY CONSCIENCE!
I hope she’s happy because this inject stung like hell too.
its so important to have someone whose disapproving glare exists in your mind even when they aren’t there.
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lyndez:
Started medication
Slept all day
Still tired
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An old friend has been in town for the last 2...
and it was tons of fun. Love reminiscing about things that don’t involve MS, discussing our mutual woes with aging, and life and thinking about all the ridiculous things we did years ago and things we wish we’d done in retrospect.. but now, at midnight on friday, I’m really excited to take my baclofen and go to bed. That makes me both sad, and glad I have understanding but not...
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My brain is strange
mostlyokay:
One of the most frustrating things about MS for me has been the memory problems.
It is the strangest thing in the world to forget things you know, but only temporarily. For about three days (maybe longer?) I couldn’t remember the name of one of my former coworkers. We’d gone out to coffee together less than a week ago. I could picture every detail of his face, his voice, the things...
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Back Pain Info You Need to Know
heardcmb:
Back Pain Info You Need to Know The pain of it all, what do you know about back pain until you feel it yourself. You cannot truly know anything, yet according to statistics, the majority of people in the world suffer some degree of back pain. Some people go through pain. Yet, these people have never survived injuries. Yet others go through pain from injuries, and feel the worst....
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I reject disability shame, no matter how visible...
pepperminteyecandy:
I think the notion that I should hide my disease or keep it a secret is totally fucked. How can being open about my having MS be a disadvantage? Anyone who is not willing to date/employ/befriend me because of it is not worth my time/effort/energy/love. I understand that it’s totally up to people as individuals to disclose, what I guess is, quite private information about...
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What I have to look forward to today (p.s.... →
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What is M.S (Multiple Sclerosis) →
bobski606:
Multiple Sclerosis is a neurological auto-immune disease. The body attacks the insulation that covers the nerves and causes them to mis-fire causing havoc in the body’s signaling system.
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On how to use spoons. →
droppedthreads:
Does getting you guys to go over there to read MS posts make me an asshole? Should I just post on both? What are your thoughts? I guess if you’re reading from your phone it’s easier just to read it here in your dashboard, eh? Okkkk fine, I’ll do both. But here’s the link still anyways.
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The secret of learning to be sick is this:...
hannahlovestea:
Hardest lesson I still haven’t learned.. when everything changes the ability to accept and move forward in a whole different direction is what I admire most about so many people I know. Respect ya’ll. Hope to get there sooner rather than later.
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thisisjeanniemarie:
“A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.”- Christopher Reeve
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Jumping off the Wagon
minustheweight:
I notice that when I get really stressed or sad, all I can think about is eating comfort foods. I don’t know why. I know exactly what’s happening while it’s happening but I still allow it to happen. I don’t know what to do to get over that hump. I’ve been sad…really really sad because of my MS problems over the last few months. It makes me feel really uncertain and uncomfortable...
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hungry-feminist:
Insomnia + MS
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memyselfcalm:
Today I am not having a “strong” day. Today I’m having a “cry in the rain” sort of day. A “try to smile and fake it” day. I’m getting a weird tightness in my back. It makes it hard to breath, and makes me panic. I just want it to stop. More than anything I just want to cry and cry and cry.
this. *hugs* and not the MS kind.
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come to me steroids.. please make me feel human...
at least as human as i can feel … off to my infusion.. at whatever time the appointment actually is.
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Yellow and blue make green, not "blellow."
today I had so much trouble getting up it was scary. My meds barely helped. Didn’t want to miss the dermatology appointment (since every missed appointment pushes back my start of Gilenya and I’m getting pretty screwy on nothing and canceling so many appointments) so I went even though I was feeling worse than yesterday which was god awful. Well, the day ended after a (minor) car...
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jadeddementia:
Taking a massive round of steroids because of the numbness and general trouble I’m having with the right side of my body that impedes my ability to walk and function normally. I should totally be getting some super amazing muscles rather than catching a cold/the flu from them all. Yeah, I know, they’re corticosteroids not anabolic steroids… bah. I don’t want to get sick to not get...
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Fooled Again →
mynewnormals:
I thought I had found the next best thing to a cure!
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pushing myself.
dailylifewithchronicillness:
Two of my best friends are home from school; one is home for the summer, the other is only home for a few weeks before she permanently moves away. My life has become social commitments and sleeping.
It’s terrible. I’ve had some sort of event everyday this week and I cannot remember anything that happened. Instead of enjoying all this time with my friends, I am...
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who has two thumbs, is in lots of pain, and gets a...
Pain continues to get worse, fatigue, blah. not very coherent lately other than some babbling about Turtles and Tortoises and failed attempts at cleaning up my apartment. Hangover sunday didn’t help but well.. I had a lot of fun on saturday. Did manage to get a frame for this fantastic artwork @BigPictureThinking sent my way. Damn talented is what you are Mr.. Have so many emails to write...
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bedbugsbiting:
I almost never fill my rescue inhaler prescription because I don’t use it much and when I didn’t have insurance it cost over $40. It’s been bad for the past couple of weeks, though, so I’ve managed to go through all the ones I had lying around. Ugh. I’ll have to wait until Monday to get more. Fortunately I had to go to the pharmacy, anyway.
This has been the story of my life for...
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unbearable tonight
droppedthreads:
my ms pain is fucking unbearable right now. i’ve been experiencing a “hug” all day (which is when all the little muscles inbetween your ribs go into spasm and make it feel like a heart attack). it comes and goes in waves, but instead of relief when it’s gone i fear the next one. currently i am experiencing what i think is trigeminal neuralgia and i feel like my face was struck...
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moleskine wellness journal seems too cool to be... →
lifewithautoimmune:
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Caregiver abuse takes many forms (detailed... →
disabledtalk:
radtransfem:
This article discusses the use of the components of abuse in the wheel below, with detailed examples of each one. For obvious reasons, it might be extremely triggering to disabled people who’ve survived abuse, but possibly also to non-disabled people who’ve survived abuse as well.
Read more…
An incredibly informative article & graphic on caregiver abuse. ...
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About last night.
brian-vlasak-phd:
I’d been fighting for the past 12-13 days, the escalating flare. ”Fighting” might not be the correct word … “ignoring” or “working through” may be more on point, but still not-completely incorrect. People look at you like you’re crazy (or suffering from a conversion disorder) when you tell them that you are in pain 24/7. Or they just don’t know what to think at all....
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That awkward moment when you don't have enough...
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when the pain makes you want to cry out of...
So much pain right now. all over. right side has been wonky for a few days but today its just moving up and down my body like electric current. The part that hurts is exrutiating and the part thats not at that time is warm or numb depending on the moment. I feel like my hands are going to pop open. They feel so swollen and hot its hard to type. I’m having crunching toes that I like to call...
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Struggle? Nah. Challenge to be conquered
samasauce:
The MS diet for me reads as follows: No dairy, eggs, gluten, yeast, legumes (including soy/tofu), and avacado Decreasing saturated fats (15g max. a day), and caffeine.
I’m doing it gradually so I’m not a psycho bitch. Right on.
That sounds so hard.. especially being a vegetarian. Let us know how you’re feeling!
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hungry-feminist:
I am in so much pain today. Every single joint hurts. It hurts to walk, to sit, to type. It really hurts to move at all. I seriously need something stronger than Tylenol or Advil.
And I’m so unprepared for this fucking final. Fuck. First C in college, here I come.
I remember this moment from grad school.. the C part.. the pain I remember from uh.. right now.
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Gylenia, Chicken pox, waiting, pain, and other...
Ugh. So I’ve been without internet for a week now (thanks for sucking RCN). In general I feel like my health has been declining but my attempts to fight the pain and fatigue have been increasing so I guess Its a wash.
Today I got lots of results from the crap load of tests I’m required to complete before I can start Gylenia. All but the dermatologist has been done so I figured...
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Zach Wahls on the Daily Show tonight - watch it.
A fine example of the reality of what LGBT couples face throughout their lives and the realities of chronic illness for everyone, and the extra difficulties faced by LGBT couples. Zach Wahls talks about his two moms, one of whom was diagnosed with MS and the trials of dealing with her treatment etc while her “wife” was not legally her wife and how the hospitals treated her. Showing the...
