Comments on: Power in numbers http://workingwithchronicillness.com/2007/07/08/power-in-numberes/ Mon, 06 Oct 2008 19:31:44 +0000 http://wordpress.org/?v=2.5 By: Rosalind Joffe http://workingwithchronicillness.com/2007/07/08/power-in-numberes/#comment-1060 Rosalind Joffe Thu, 12 Jul 2007 11:54:49 +0000 http://keepworkinggirlfriend.com/2007/07/08/power-in-numberes/#comment-1060 Yup. That's the Aha I'm talking about. I've Register's book - and it is SO affirming.No longer a weak runt? Hooray for invisible disability culture! You go, girl! Rosalind Yup. That’s the Aha I’m talking about. I’ve Register’s book - and it is SO affirming.No longer a weak runt? Hooray for invisible disability culture! You go, girl! Rosalind

]]> By: thegreatlinguini http://workingwithchronicillness.com/2007/07/08/power-in-numberes/#comment-1059 thegreatlinguini Thu, 12 Jul 2007 05:28:00 +0000 http://keepworkinggirlfriend.com/2007/07/08/power-in-numberes/#comment-1059 When I was first diagnosed with liver disease, depression, and fibromyalgia (all within a few months in 1999), I read up online and in the public library. I started with the CDC web site for reliable medical info and also found a disease-specific local support group. But what really gave me the aha! that I'm connected to all people with chronic illness was reading a book called The Chronic Illness Experience by Cheri Register (ISBN 1568383460). Reading the words of so many people in that book - they were so much like me, even though our illnesses were different. It really helped me develop my identity as a person with a disability and I've made fabulous connections with other people with disabilities who understand disability as a way of being more than just medical deficit. Many of my symptoms have been lifelong, but I no longer identify (most of the time!) as a weak runt, which was how I saw myself before. Hooray for disability culture and for being able to recognize and appreciate the experiences of other people with invisible chronic illness. -- it becomes less invisible when you see yourself (and your fatigue, pain, etc.) in others. When I was first diagnosed with liver disease, depression, and fibromyalgia (all within a few months in 1999), I read up online and in the public library. I started with the CDC web site for reliable medical info and also found a disease-specific local support group. But what really gave me the aha! that I’m connected to all people with chronic illness was reading a book called The Chronic Illness Experience by Cheri Register (ISBN 1568383460). Reading the words of so many people in that book - they were so much like me, even though our illnesses were different. It really helped me develop my identity as a person with a disability and I’ve made fabulous connections with other people with disabilities who understand disability as a way of being more than just medical deficit. Many of my symptoms have been lifelong, but I no longer identify (most of the time!) as a weak runt, which was how I saw myself before. Hooray for disability culture and for being able to recognize and appreciate the experiences of other people with invisible chronic illness. — it becomes less invisible when you see yourself (and your fatigue, pain, etc.) in others.

]]> By: Barbara http://workingwithchronicillness.com/2007/07/08/power-in-numberes/#comment-1050 Barbara Mon, 09 Jul 2007 14:41:08 +0000 http://keepworkinggirlfriend.com/2007/07/08/power-in-numberes/#comment-1050 That is so true. Especially since people with one autoimmune disease often have others. When a treatment works on one disease, it shows promise for others. I have seven autoimmune diseases and the current treatmetn I am on (finally) has helped all of them plus the bone marrow cancer I have. Barbara Yodice, Founder of the Autoimmune Information Network www.aininc.org That is so true. Especially since people with one autoimmune disease often have others. When a treatment works on one disease, it shows promise for others. I have seven autoimmune diseases and the current treatmetn I am on (finally) has helped all of them plus the bone marrow cancer I have.

Barbara Yodice, Founder of the Autoimmune Information Network
http://www.aininc.org

]]> By: Rosalind Joffe http://workingwithchronicillness.com/2007/07/08/power-in-numberes/#comment-1049 Rosalind Joffe Mon, 09 Jul 2007 13:33:07 +0000 http://keepworkinggirlfriend.com/2007/07/08/power-in-numberes/#comment-1049 Diana - Glad I could lead you somewhere new. There's so much out there but it takes a lot of time to find it all. Rosalind Diana - Glad I could lead you somewhere new. There’s so much out there but it takes a lot of time to find it all.
Rosalind

]]> By: Rosalind Joffe http://workingwithchronicillness.com/2007/07/08/power-in-numberes/#comment-1048 Rosalind Joffe Mon, 09 Jul 2007 13:31:36 +0000 http://keepworkinggirlfriend.com/2007/07/08/power-in-numberes/#comment-1048 Laura - It's always a surprise to me to find out what helps me feel better and what doesn't. I go to an acupuncturist - have for years - and although she hasn't helped with any specific symptoms it does help my overall energy level. We have to take the time to figure out what will help us. Rosalind Laura - It’s always a surprise to me to find out what helps me feel better and what doesn’t. I go to an acupuncturist - have for years - and although she hasn’t helped with any specific symptoms it does help my overall energy level. We have to take the time to figure out what will help us. Rosalind

]]> By: Diana Brice http://workingwithchronicillness.com/2007/07/08/power-in-numberes/#comment-1047 Diana Brice Mon, 09 Jul 2007 13:20:25 +0000 http://keepworkinggirlfriend.com/2007/07/08/power-in-numberes/#comment-1047 Rosalind. I've known for some time that autoimmune diseases share symptoms as well as treatments. I have lupus and my best friend has recently diagnosed ms. I also have Sjogren's, Raynauds and osteoarthritis. I sincerely hope that the medical community will begin to do as you suggested. This would improve treatment for all of the diseases. THANKS so much for the link to the AARDA site. I briefly looked at it, but will go back at home when I have more time to find out all it has to offer. Rosalind. I’ve known for some time that autoimmune diseases share symptoms as well as treatments. I have lupus and my best friend has recently diagnosed ms. I also have Sjogren’s, Raynauds and osteoarthritis. I sincerely hope that the medical community will begin to do as you suggested. This would improve treatment for all of the diseases. THANKS so much for the link to the AARDA site. I briefly looked at it, but will go back at home when I have more time to find out all it has to offer.

]]> By: Laura http://workingwithchronicillness.com/2007/07/08/power-in-numberes/#comment-1046 Laura Sun, 08 Jul 2007 18:53:14 +0000 http://keepworkinggirlfriend.com/2007/07/08/power-in-numberes/#comment-1046 Rosalind, Great Post!!! I agree with you. As in life, there is so much we can learn from each other. In Chronic Fatigue Syndrome, doctors have to rule out practically all other illnesses, before they will diagnose CFS. Which means (at least in my head) these doctors have considered a whole load of other possibilities...before the final word came down. I can not speak for other patients, but in my experience, my team of doctors have tried therapies that were not considered ways to treat CFS. They believe in treating a patient, and not an illness. Which gave them greater insight into who I am, and what I respond well to. My experience with alternative therapy is a bit of an interesting example. When I first went for an acupuncture treatment, I had a very lingering case of bronchitis....going on 3 months. My acupuncturist had no interest in my "medical history". Still doesn't need to know about it. All he needed to know were that my lungs were hurting, breathing was a bit of a problem, and I had recurring fevers. That is what I was experiencing then. He would treat me, just like anyone else who complained of the same problems. It makes no difference whether these people had CFS, asthma, or their lungs hurt because a piano fell on their chest. As a result of that kind of treatment...I am doing a whole lot better. Rosalind, Great Post!!!

I agree with you.

As in life, there is so much we can learn from each other. In Chronic Fatigue Syndrome, doctors have to rule out practically all other illnesses, before they will diagnose CFS. Which means (at least in my head) these doctors have considered a whole load of other possibilities…before the final word came down. I can not speak for other patients, but in my experience, my team of doctors have tried therapies that were not considered ways to treat CFS. They believe in treating a patient, and not an illness. Which gave them greater insight into who I am, and what I respond well to.

My experience with alternative therapy is a bit of an interesting example. When I first went for an acupuncture treatment, I had a very lingering case of bronchitis….going on 3 months. My acupuncturist had no interest in my “medical history”. Still doesn’t need to know about it. All he needed to know were that my lungs were hurting, breathing was a bit of a problem, and I had recurring fevers. That is what I was experiencing then. He would treat me, just like anyone else who complained of the same problems. It makes no difference whether these people had CFS, asthma, or their lungs hurt because a piano fell on their chest. As a result of that kind of treatment…I am doing a whole lot better.

]]>