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| This account (ladydiva) is no longer available. | | 2188 total posts | |
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| | Subject: WHAT ABOUT | Posted: October 12, 2007 @ 8:31 AM | | WHAT ABOUT YOUR DISABILITY DRIVES YOU NUTS?
FOR ME ITS NEVER KNOWING FROM DAY TO DAY WHATS GOING TO BE MY ROADBLOCK. LIKE FOR THE PAST WEEKI HAVE BEEN HAVING PROBLEM WITH THE VISION IN MY RIGHT EYE TO THE POINT WERE YOU CAN SAY THAT IM BLINDED. WHO KNOWS WHAT ITS GOING TO BE NEXT WEEK. |
| | | | | | Subject: WHAT ABOUT | Posted: October 12, 2007 @ 11:35 AM | | With my lupus and fibromyalgia I never know what to expect from day to day or from hour to hour. This week it seems to be nerve pain. One minute I'm standing in the kitchen holding a cup of hot tea. The next minute I'm on my knees, the hot tea is all over the floor. Last week it was severe arthritis. The week before that it was blinding headaches. I think as you mentioned, the unpredictability drives me bonkers!
Then add to that, the majority of my symptoms are not visible to anyone but me. So people think I'm making crap up. That steams me up!
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| | | | | This account (ladydiva) is no longer available. | | 2188 total posts | |
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| | Subject: WHAT ABOUT | Posted: October 12, 2007 @ 12:30 PM | |
Quoting: frecklenose
With my lupus and fibromyalgia I never know what to expect from day to day or from hour to hour. This week it seems to be nerve pain. One minute I'm standing in the kitchen holding a cup of hot tea. The next minute I'm on my knees, the hot tea is all over the floor. Last week it was severe arthritis. The week before that it was blinding headaches. I think as you mentioned, the unpredictability drives me bonkers!
Then add to that, the majority of my symptoms are not visible to anyone but me. So people think I'm making crap up. That steams me up!
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OH BOY I TOTALLY UNDER STAND TORALLY ABOT PEOPLE THINKING YOUR MAKING STUFF UP. EVEN THOUGH I USE A CHAIR I HAVE TO CONSTANTLY EXPLAIN WHAT THIS DISEAS IS DOING TO ME AND MY BODY.
HEY WHAT DO YOU TAKE FOR YOUR HEAD ACHES. I WAS TAKING IMITREX BUT EXCEDRINE MIGRAIN WORKS JUST FINE |
| | | | | | Subject: WHAT ABOUT | Posted: October 13, 2007 @ 1:39 AM | | When mine get really bad, I have to go in for a shot and take Toradol every few hours. I'm allergic to a lot of meds and with my lupus I have such a high tolerance for meds, it is a balancing act to get anything to work. Right now a nerve block shot and the toradol and sleep are about the only things that help when the headaches get bad. My little headaches, as I call them, get better with the beta blockers, I think it is Norvasc this time.
I have a handicap placard and get sick of people asking me if I really need to use it, because I don't "look handicapped".
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| | | | | | Subject: WHAT ABOUT | Posted: October 17, 2007 @ 4:47 PM | | It drives me nuts when people look at my legs and say stuff like " where is your knee" or they say "if you lost weight, your legs would be smaller" what they don't understand is... there are skinny people with lymphedema, and in some cases it'sworst than mine. Plus, my legs are not fat, so even when I lose the weight, I'll stil have this same condition. I can only get treatments for it, and even at that, it's incurable. Sometimes people's ignorance is sooooo fustratiing  |
| | | | | | Subject: WHAT ABOUT | Posted: October 17, 2007 @ 11:18 PM | |
Quoting: QUEENBOONISHA1
It drives me nuts when people look at my legs and say stuff like " where is your knee" or they say "if you lost weight, your legs would be smaller" what they don't understand is... there are skinny people with lymphedema, and in some cases it'sworst than mine. Plus, my legs are not fat, so even when I lose the weight, I'll stil have this same condition. I can only get treatments for it, and even at that, it's incurable. Sometimes people's ignorance is sooooo fustratiing
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Hang in there sweetie. There are always ignorant people out there making rude comments. I just learn to have that witty come back. When I was in high school I used to get asked all the time about the huge scar under my chin. I would tell people that I was almost strangled to death by barbed wire. They would just stare at me with their mouths open, while I walked away.
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| | | | | | Subject: WHAT ABOUT | Posted: October 18, 2007 @ 10:56 AM | |
Quoting: frecklenose
Quoting: QUEENBOONISHA1
It drives me nuts when people look at my legs and say stuff like " where is your knee" or they say "if you lost weight, your legs would be smaller" what they don't understand is... there are skinny people with lymphedema, and in some cases it'sworst than mine. Plus, my legs are not fat, so even when I lose the weight, I'll stil have this same condition. I can only get treatments for it, and even at that, it's incurable. Sometimes people's ignorance is sooooo fustratiing
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Hang in there sweetie. There are always ignorant people out there making rude comments. I just learn to have that witty come back. When I was in high school I used to get asked all the time about the huge scar under my chin. I would tell people that I was almost strangled to death by barbed wire. They would just stare at me with their mouths open, while I walked away.
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I used to say stuff like that too! Those expressions on thier faces were always priceless!  |
| | | | | | Subject: WHAT ABOUT | Posted: November 13, 2007 @ 12:09 AM | | | I hate it when people thinks that can judge just by what they think is going on. For me it is a day to day out watch too. This week i am have a cough that feels like i an gonna loose what i have left of my lungs. And a splitting headache that will not go away. I have gone to bead and waken up with it now for 3 days. last night i cried and prayed that it would soon stop hurting |
| | | | | | Subject: WHAT ABOUT | Posted: January 18, 2008 @ 4:55 PM | | Let's see. I have a series of disabilities. So I'm going to have to address them, one at a time.
Asperger's Syndrome--There are a host of gripes I have about this one. Social ineptitude. Not knowing how to express my feelings. Most people with AS have it mild enough that they can live somewhat regular lives. This is not my case. Mine is on the severe side. I think, that's my #1 gripe, here.
Ataxia--Slowly degenerating fine motor skills. Let's face it, SCA is a horrible disability!
Fibromyalgia--the pain. That's what fibro is, right? Pain!
Scoliosis--My spine takes a sharp turn inward. You would figure, the thing that drives me most nuts is the pain. It's not. What drives me nuts is that it pushes my stomach forward.
Social anxiety--This speaks for itself. But the worst thing about it is the stomach problems I get from this.
Overall--I'd have to say that people just don't understand. Whoever said most people are good are in deed wrong. Most people are neutral, with limited caring ability. They have too much trouble caring for those close to them. And it's hard enough for me to understand myself. How the heck are they supposed to understand someone who is "different"? |
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