August 12, 2004
Spoke too soon
Revenge of Fibromyalgia. I knew I overdid it at the storage unit, but if I stop, I don't start again. Don works 14 hours a day, he can't do it. I have to work through the pain and take the consequences later. You know...I don't even tell many people that I have been diagnosed with FMS. I hear quite a lot of how "popular" it is, or how it is a wastebasket disease. You know how that makes me feel? I'm a wastebasket. Are doctors really so egotistical to believe that just because they can't find a diagnosis it doesn't exist? What about the millions of people with FMS? Yes, I'm sure many of them really don't have FMS to begin with, but again, that is the doctor's error. Many of us deal with misdiagnosis, especially with auto immune diseases. Doctors even tell us that even if we are misdiagnosed, the treatment is the same. I've actually heard this. The human genome project has revealed some genes that are related to auto immune diseases. Many members of my family have HLA-B27. There are more genes involved, because most of my family has auto immune diseases, but about half are HLA-B27 positive. The ones that are HLA-B27 positive have Ankylosing Spondylitis, Lupus, Arthritis, Rheumatoid Arthritis, Psoriatic Arthritis, and one has Fibromyalgia as well. We all tend to have the same symptoms, but many different diagnoses. Migraines, dowager's hump, constipation, sleep disturbance, sleep apnea, muscle pain, joint pain, thyroid problems (that aren't detectable by blood work, most have nodules on their thyroid), TMJ problems, joint degeneration. Funny thing is, when one is diagnosed with something, we all go in, and sure enough......yet we all have different diseases that we are diagnosed with. My Uncle has Ankylosing Spondylitis, and is completely disabled. He's had two hip replacement surgeries, pain pump, and is in a wheelchair. The social security administration in all it's wisdom has said he's not disabled. My Aunt, who has Lupus, Ankylosing Spondylitis, Fibromyalgia has been without an income since 1999. She's lost her house, her children, and her self respect. She's been turned down for disability several times. My Mother is now facing the fact that she can no longer fight her body. It is winning. Why, when we have to fight our bodies to live, do we also have to fight the governmental systems that are in place for people like us? I have a new fight now. The system has to change. One doctor told me that Hitler (Adolph Hitler, fascist nazi dictator of Germany) was right. Only the strong are supposed to survive. Nature is supposed to weed out the weak. Well, I'm not a weed, and I'm anything but weak. Hitler was a sociopath with a god-complex. These are good people and they deserve to not only live a good life without pain, but free from discrimination and free from persecution for something beyond their control. The sooner we all realize that these people are not trying to get something for nothing, they want a chance at a good life. Who doesn't want that? Who doesn't deserve that? Once we wake up and start putting programs in place that are designed to help people who are disabled, then we are truly on our way to a peaceful world.
Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know it so it goes on flying anyway.
~Mary Kay Ash
Posted by HeatherLeigh on August 12, 2004 12:49 AM
Heather,Thank you for the kind words you sent me regarding my battle to overcome agoraphobia. It made my self-esteem go up a few notches(smiling). If I can help one person understand even a little about what it is like being an agoraphobic and what it is like taking baby steps just to leave the house, then I am happy to help.Your writing has touched me as well. And the joke about the squirrel...well, lucky thing our bathroom is right across the hall from the office! Keep up the good work!Much Love and Fuzzy Hugz,Rose
Posted by: Rose S. at August 12, 2004 12:42 PM
DATE: 8/12/2004 01:17:44 PM
Heather,I can't agree more.....WASTEBASKET DX!!!!!What an insult to us.I don't tell people either, outsiders find out on a need to know basis, and generally they don't need to know. Well my neighbors gradually were told because they wanted me to come to the neighborhood potluck, or holiday party or something and I had to explain. They are quite understanding and very sweet people, glad to have them as neighbors.I hate getting the "oh I know someone who has that, but she's working 2 fulltime jobs and working at a soup kitchen as a volunteer", "what's your problem" kinda stuff. Or the "oh you should just do 'this' and it'll cure you'. If there is a cure I'm sure my doctor will tell me. In the meantime I'm doing the best I can with what info I have at the time.WASTEBASKET, is that because it's predominantly a woman's ailment???? I refuse to be judged!Hugs, Judy
Posted by: Judy in AZ at January 17, 2005 06:19 AM