“I have treated more than 2,000 AIDS and CFS patients in my career. And the CFS patients are MORE sick and MORE disabled every single day than my AIDS patients are, except for the last two months of life!”
– Dr. Marc Loveless
(infectious disease specialist and head of the CFS and AIDS Clinic at Oregon Health Sciences University, in Congressional Testimony, CFS Awareness Day, May 12, 1995)
Archive for the ‘Ability/Disability’ Category
What would you do?
Posted by Kelli on October 12th, 2009
What would you do if you were completely well tomorrow?
Parking in the ‘Handicapped’ Spots (Invisible Illness)
Posted by Kelli on September 16th, 2009
Can Those with an Invisible Illness Park in the Blue Spots without Others Seeing Red?
By: Lisa Copen
OPINION, August 20 /Christian Newswire/ — "Do you know the fine for using someone else’s handicapped parking permit is $300?" "That parking spot is saved for the disabled! You should be ashamed of yourself!" Nearly everyone with an invisible illness has been told, "You don’t look disabled to me!" One of my friends replied, "Well, you don’t look stupid to me." I just bite my lip to try to prevent the tears from forming, broken-hearted that I appear to be deceptive, when I would do anything to give back this parking perk that I use on a rare occasion.
As I circle the parking lot a fourth time on this day I hope for a spot to open up within two-hundred yards of the store, but there is nothing remotely close at this bustling superstore where I need to buy my prescriptions and milk for my toddler. My rheumatoid arthritis is flaring badly, causing extra fluid in my knees to dislocate pieces of loose bones. Every step is painful and unpredictable.
Finally I sigh in resignation and pull into the farthest "blue parking spot." I reach for the placard–the one that has a bold white symbol of a wheelchair–and no, I don’t have a wheelchair–yet. So after fifteen years of having this "privilege" at my disposal I still warily scan the area before reluctantly dangling the placard from the rear view mirror. Is there anyone watching, wondering, or waiting, ready to confront me?
I’ve had scathing notes left on my windshield and many people, empowered by television exposés, have approached me with their opinions. Judgmental expressions and whispers sting just as much. My husband and I adopted a baby and when I would get my child of the car I would avoid eye contact with onlookers because I could hear their whispers of, "She’s not disabled! Or–if she is–she has no right to have a child!"
Nearly 1 in 2 Americans (133 million) live with a chronic illness. It could be diabetes, cancer, cystic fibrosis, fibromyalgia or even chronic back pain. Many illnesses make walking long distances impossible because of limited lung capacity, physical pain, or unpredictable numbness in the legs. According to statistics provided by the U.S. Census Bureau, about 96% of these illnesses are invisible. There is no sign of the illness existing, nor the use of an assistive device like a cane or a wheelchair.
I began National Invisible Chronic Illness Awareness Week in 2002, which is held this year Sept 10-16, 2007, after witnessing thousands of people who had frustrations, fears, loneliness, and bitterness, about feeling invalidated. One’s illness, age, diagnosis, or level of disease degeneration, doesn’t change the emotional pain.
Strangers and loved ones alike doubt the severity of our illness or even the diagnosis. We’ve heard, "You look so good! You must be feeling better." But we don’t feel better. We just bought some fake tan in a bottle and pasted on a smile.
National Invisible Chronic Illness Awareness Week is a time to acknowledge that invisible illness is more prevalent than we’d imagine and everyone–both those who are healthy and ill–can make a difference by encouraging someone with an invisible illness, rather than tearing someone down.
Are those parking spots painted blue because they give so many people the blues? That small area of square footage is a breeding ground for many frustrations as we are forced to defend our illness and character to total strangers. I’d gladly trade in my placard indefinitely for just a week of having my old body back when I could run, sit on the floor, or even hold a fork without tendons popping out of place.
I anticipate the day when a nationally designated system is formed. Texas law states that blue placards are for those who use assistive devices; red permits are for people with a "condition that impairs mobility." In other states, red symbolizes six months of disability and blue is permanent. It’s confusing! And for one with invisible illness, the wheelchair symbol discredits both our physical pain and–in the eyes of others–our reputation. Until then, we rely on Invisible Illness Week bumper stickers.
The next time you see a healthy looking man loading groceries into his car–parked in the "blue spot"–don’t glare. Stop and offer to help him, or just smile nicely, giving him the benefit of the doubt. Seventy percent of suicides have uncontrollable physical pain as a factor. Your smile may save his life. At the least, it will astonish him, perhaps providing him with genuine encouragement he hasn’t felt for months.
Source: http://www.christiannewswire.com
I have gotten dirty looks by people when I would unfold myself out of my sports car that I had when I first became ill.. & I’d do as Lisa, scower the lot for someplace not a half mile away before I’d take up an accessibility spot.. I had one lady start marching up at me as I got out the of the Mustang, but as I stood up towards her, with cane in hand, she redirected herself – good thing..
I have also gotten dirty looks by people when I am with an another apparently able-bodied person.. (in fact the person in question is 1/4 blind – but few know).. So, cuz *she* is visibly able bodied, I get dirty looks.. Cuz.. this has even happened when I get out of the driver’s seat & I have *my* cane in my hand. How insane is that???
I can not believe the audacity of some people.. If someone actually came up to me & said something, boy-oh-boy would they get a mouthful! They live their own lives & I’ll live mine.. but if they want mine, they can have it, Pain & all!!
Understand before you judge..
Posted by Kelli on August 9th, 2009
There are the things I would like you to understand before you judge me…
Please know that being sick doesn’t mean I’m not human. I may spend most of my day flat on my back and I might not seem like great company, but I’m still me stuck inside this body. I worry about school, work, family and friends and I’d still like to hear about yours.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable but it will pass. I’ve been sick for for so long that I can’t afford to be miserable all the time, in fact I work hard at not being miserable. So if I sound happy, it means that I’m happy, it does not mean that I am well. I may be in pain and sicker than ever.
Please, don’t say, “Oh, you’re sounding better!”.
I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.
Please understand that being able to stand up for five minutes, doesn’t mean that I can stand ten minutes, or an hour. It’s likely that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move, but with Fibromyalgia it gets more confusing.
Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything. That’s what a fatigue-based illness does to you.
Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, and the next I’ll struggle to reach the kitchen.
Please don’t attack me when I’m ill by saying, “But you did it before!”.
If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally.
Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Fibromyalgia may cause secondary depression (wouldn’t you get depressed if you were no longer able to participate in life?) but it is not caused by depression. Telling me that I need exercise is not appreciated or correct – if I could do it, I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something. Fibromyalgia does not forgive.
Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.
If you want to suggest a cure, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because every one of my friends has already suggested every theory known to man. I tried them all, but quickly realized I was using up so much energy trying new treatments I was making myself sicker, not better. If there was something that cured Fibromyalgia, all of us would know about it by now.
If you read this and still want to suggest a cure, submit it in writing but don’t expect me to rush out and try it. If it is something new, with merit, I’ll discuss it with my doctor.
Please understand that getting better can be a slow process. Fibromyalgia entails numerous symptoms and it can take a long time to sort them all out.
I depend on you – people who are not sick for many things but most importantly, I need you to understand me.
The above text may be printed freely, and shared as needed providing all content is kept intact. No other person shall ever publish this work citing themselves as the author
Source: I acquired this from Kathy on Facebook who received this from Denise of Fibro Worldwide group.
Five Things to Know About Fibromyalgia
Posted by Kelli on July 21st, 2009
Five Things You Should Know About Fibromyalgia
by Amanda Rinkel
May 5th, 2009
International Chronic Fatigue Syndrome & Fibromyalgia Awareness Day is next week on May 12th. I’m going to take a break from articles on internet wastes of time, movie reviews and news updates. Instead I’m going to take a moment to highlight these illnesses and the necessity for awareness.
Five Things You Should Know About Fibromyalgia
1. 3-8 million people in the United States have Fibromyalgia and up to 80% are women.
2. Fibromyalgia most commonly hits between the ages of 20-40 years old, at the “prime of life.”
3. It has been nick-named “the pain disease” because of the characteristic wide-spread, migrating body pain patients have. The pain has been described differently by each patient from dull aches to deep bone pain to burning, tearing, singeing, stabbing or shooting. The breadth of pain descriptions is what makes diagnosis difficult.
4. People with Fibromyalgia have cognitive difficulties, such as memory problems and attention issues, that has been nicknamed “Fibro fog” or “brain fog.”
5. Fibromyalgia is considered as functionally disabling as rheumatoid arthritis but is much less accepted and recognized by both the medical establishment, Social Security and the community at large.
To learn more check out www.fmsaware.org.
Soource: blog.su-spectator.com
“I have treated more than 2,000 AIDS and CFS patients in my career. And the CFS patients are MORE sick and MORE disabled every single day than my AIDS patients are, except for the last two months of life!”
– Dr. Marc Loveless
(infectious disease specialist and head of the CFS and AIDS Clinic at Oregon Health Sciences University, in Congressional Testimony, CFS Awareness Day, May 12, 1995)
Categories
Posted by Kelli on May 24th, 2009
The sole purpose of this post is to create, and potentially modify categories for this Blog. Initially, I had this categorized list.. Three columns, each with the appropriate title.. That was until I realized, well, I needed a new category.. I don’t have room for 4 columns, so I gave up on that idea . I’m just gonna put ‘em in alphabetical order and then add later as needed.