Comments on: Do you think of yourself as someone who lives with a chronic illness? http://workingwithchronicillness.com/2007/07/11/do-you-think-of-yourself-as-someone-who-lives-with-a-chronic-illness/ Sun, 12 Oct 2008 21:58:38 +0000 http://wordpress.org/?v=2.5 By: SwampHag http://workingwithchronicillness.com/2007/07/11/do-you-think-of-yourself-as-someone-who-lives-with-a-chronic-illness/#comment-1071 SwampHag Wed, 18 Jul 2007 05:56:27 +0000 http://keepworkinggirlfriend.com/2007/07/11/do-you-think-of-yourself-as-someone-who-lives-with-a-chronic-illness/#comment-1071 Hi Rosalind, A friend who reads all sorts of feeds sent me a link to your blog and that question. :-) Now I've got it on my bloglines. Hi Rosalind,

A friend who reads all sorts of feeds sent me a link to your blog and that question. :-) Now I’ve got it on my bloglines.

]]> By: Diana Brice http://workingwithchronicillness.com/2007/07/11/do-you-think-of-yourself-as-someone-who-lives-with-a-chronic-illness/#comment-1070 Diana Brice Mon, 16 Jul 2007 16:17:26 +0000 http://keepworkinggirlfriend.com/2007/07/11/do-you-think-of-yourself-as-someone-who-lives-with-a-chronic-illness/#comment-1070 Since being diagnosed with lupus in 1993, I've read everything I can get my hands on about it in print and on the internet. I search under lupus, invisible chronic illness, working with chronic illness and use links on sites I visit.Before taking new medication I research side effects and have saved myself from flares because of this. I consider myself a partner with the doctor in monitoring my treatment because he has many patients, I have only one (me). My medical condition is just another side of me like my brown eyes and 5 foot stature. I have had to change my lifestyle, but Thank God, I am still working. Since being diagnosed with lupus in 1993, I’ve read everything I can get my hands on about it in print and on the internet. I search under lupus, invisible chronic illness, working with chronic illness and use links on sites I visit.Before taking new medication I research side effects and have saved myself from flares because of this. I consider myself a partner with the doctor in monitoring my treatment because he has many patients, I have only one (me). My medical condition is just another side of me like my brown eyes and 5 foot stature. I have had to change my lifestyle, but Thank God, I am still working.

]]> By: Anne http://workingwithchronicillness.com/2007/07/11/do-you-think-of-yourself-as-someone-who-lives-with-a-chronic-illness/#comment-1066 Anne Fri, 13 Jul 2007 15:49:16 +0000 http://keepworkinggirlfriend.com/2007/07/11/do-you-think-of-yourself-as-someone-who-lives-with-a-chronic-illness/#comment-1066 I am struggling with this one. My particular chronic illness, CP, is one I learned about at 31. Very unusual by all counts, since it is a diagnosis made in childhood. Prior to the diagnosis, I accomplished quite a bit because I was living in what I now call an "ignorant bliss". It was because I ran a marathon and tore a ligament in my foot that I learned of my diagnosis and had multiple surgeries. I now live with constant pain, tightness, and new sensations in the LEs because of new dynamics imposed by those reconstructive surgeries. My identity is now largely shaped by what I can't do versus what I can and I've applied this restriction to so many areas of my life. I am now working to undo that damage and make a life outside of medical appointments and pain. I want to be successful despite the stigma of my illness. I've used the internet largely to research how my illness affects my muscles so, with this information, I can find ways to mainstream the stretching and exercise I must do. In the beginning, I spent hours on websites (in casts, I had more than enough time!) developed by leading orthopedic and medical associations to truly understand what I was living with and how to manage it. While I have a mild case on the scales, it does not feel that way and has to be managed regardless! There is little published in the literature about adults with CP, especially mild, and I am basically forging new ground so it is equally interesting and frustrating. I am struggling with this one. My particular chronic illness, CP, is one I learned about at 31. Very unusual by all counts, since it is a diagnosis made in childhood. Prior to the diagnosis, I accomplished quite a bit because I was living in what I now call an “ignorant bliss”. It was because I ran a marathon and tore a ligament in my foot that I learned of my diagnosis and had multiple surgeries. I now live with constant pain, tightness, and new sensations in the LEs because of new dynamics imposed by those reconstructive surgeries. My identity is now largely shaped by what I can’t do versus what I can and I’ve applied this restriction to so many areas of my life. I am now working to undo that damage and make a life outside of medical appointments and pain. I want to be successful despite the stigma of my illness.

I’ve used the internet largely to research how my illness affects my muscles so, with this information, I can find ways to mainstream the stretching and exercise I must do. In the beginning, I spent hours on websites (in casts, I had more than enough time!) developed by leading orthopedic and medical associations to truly understand what I was living with and how to manage it. While I have a mild case on the scales, it does not feel that way and has to be managed regardless! There is little published in the literature about adults with CP, especially mild, and I am basically forging new ground so it is equally interesting and frustrating.

]]> By: Joan http://workingwithchronicillness.com/2007/07/11/do-you-think-of-yourself-as-someone-who-lives-with-a-chronic-illness/#comment-1064 Joan Thu, 12 Jul 2007 15:02:47 +0000 http://keepworkinggirlfriend.com/2007/07/11/do-you-think-of-yourself-as-someone-who-lives-with-a-chronic-illness/#comment-1064 Rosalind, after much resistance after first being told about my illness, and that it would be something with which I'd have to deal with for the rest of my life, I do now know it's considered a chronic illness. But, I don't think I would have searched for information using the keywords "chronic illness" except if I were doing research like we did for our book. I'd probably search for my specific illness instead. I might search under autoimmune illness if I wanted to understand more about autoimmunity, though. Joan Rosalind, after much resistance after first being told about my illness, and that it would be something with which I’d have to deal with for the rest of my life, I do now know it’s considered a chronic illness. But, I don’t think I would have searched for information using the keywords “chronic illness” except if I were doing research like we did for our book. I’d probably search for my specific illness instead. I might search under autoimmune illness if I wanted to understand more about autoimmunity, though.

Joan

]]> By: Rosalind Joffe http://workingwithchronicillness.com/2007/07/11/do-you-think-of-yourself-as-someone-who-lives-with-a-chronic-illness/#comment-1063 Rosalind Joffe Thu, 12 Jul 2007 13:57:18 +0000 http://keepworkinggirlfriend.com/2007/07/11/do-you-think-of-yourself-as-someone-who-lives-with-a-chronic-illness/#comment-1063 Swamphag- I'm curious, how did you learn about this site - if you don't search with these terms? Rosalind Swamphag- I’m curious, how did you learn about this site - if you don’t search with these terms? Rosalind

]]> By: Rosalind Joffe http://workingwithchronicillness.com/2007/07/11/do-you-think-of-yourself-as-someone-who-lives-with-a-chronic-illness/#comment-1062 Rosalind Joffe Thu, 12 Jul 2007 13:55:56 +0000 http://keepworkinggirlfriend.com/2007/07/11/do-you-think-of-yourself-as-someone-who-lives-with-a-chronic-illness/#comment-1062 Thanks, Ali! Thanks, Ali!

]]> By: Ali http://workingwithchronicillness.com/2007/07/11/do-you-think-of-yourself-as-someone-who-lives-with-a-chronic-illness/#comment-1061 Ali Thu, 12 Jul 2007 13:46:33 +0000 http://keepworkinggirlfriend.com/2007/07/11/do-you-think-of-yourself-as-someone-who-lives-with-a-chronic-illness/#comment-1061 I have Multiple Sclerosis and I do think of myself as having a chronic illness. In my opinion, I didn't do that I wouldn't be able to wrap my brain around what goes on with my body and in my mind. I am not ashamed of having MS and I don't hide it. I don't let it define me, but its certainly an aspect of my life and I can't ignore it anymore than I can ignore my father's diabetes. Since I can't ignore the fact that this is part of my life, I do frequently search for information (that is how I found this site). I usually use the NET. I will access the databases through the university that I work for, and search medical literature regarding MS. I look up info on living with chronic illness, stress management, etc. Sometimes I will use search strings such as "living powerfully with MS" or something along those lines to see if someone else is writing about a more specific part of what i am looking for. thanks for being around and being positive. I have Multiple Sclerosis and I do think of myself as having a chronic illness. In my opinion, I didn’t do that I wouldn’t be able to wrap my brain around what goes on with my body and in my mind. I am not ashamed of having MS and I don’t hide it. I don’t let it define me, but its certainly an aspect of my life and I can’t ignore it anymore than I can ignore my father’s diabetes.

Since I can’t ignore the fact that this is part of my life, I do frequently search for information (that is how I found this site). I usually use the NET. I will access the databases through the university that I work for, and search medical literature regarding MS. I look up info on living with chronic illness, stress management, etc. Sometimes I will use search strings such as “living powerfully with MS” or something along those lines to see if someone else is writing about a more specific part of what i am looking for.
thanks for being around and being positive.

]]> By: SwampHag http://workingwithchronicillness.com/2007/07/11/do-you-think-of-yourself-as-someone-who-lives-with-a-chronic-illness/#comment-1057 SwampHag Wed, 11 Jul 2007 18:48:14 +0000 http://keepworkinggirlfriend.com/2007/07/11/do-you-think-of-yourself-as-someone-who-lives-with-a-chronic-illness/#comment-1057 Interesting question. I have Fibromyalgia and severe allergies and when I was first diagnosed with FM I did my research. At the time ('93) I was not online so the research was old-fashioned. I currently work online in an area where such info comes to me but I do not actively research. I initially researched to confirm that yep, this is what I have, and went through a couple of years trying all sorts of treatments until I figured out what worked for me and the research stopped. I have FM but, while it impacts my life in big ways, I work with it and try not to let it define who I am. I use the internet for MANY other things - games, entertainment, news - but rarely to actively research my own health conditions. The only exception is when a new person in my life wishes to understand it better and wants their own info, then I'll supply them with links. Interesting question. I have Fibromyalgia and severe allergies and when I was first diagnosed with FM I did my research. At the time (’93) I was not online so the research was old-fashioned. I currently work online in an area where such info comes to me but I do not actively research. I initially researched to confirm that yep, this is what I have, and went through a couple of years trying all sorts of treatments until I figured out what worked for me and the research stopped.

I have FM but, while it impacts my life in big ways, I work with it and try not to let it define who I am. I use the internet for MANY other things - games, entertainment, news - but rarely to actively research my own health conditions. The only exception is when a new person in my life wishes to understand it better and wants their own info, then I’ll supply them with links.

]]> By: Rosalind Joffe http://workingwithchronicillness.com/2007/07/11/do-you-think-of-yourself-as-someone-who-lives-with-a-chronic-illness/#comment-1056 Rosalind Joffe Wed, 11 Jul 2007 17:54:13 +0000 http://keepworkinggirlfriend.com/2007/07/11/do-you-think-of-yourself-as-someone-who-lives-with-a-chronic-illness/#comment-1056 Thanks, Nickie. I love hearing that you've figure out how to get what you need and have fun! Rosalind Thanks, Nickie. I love hearing that you’ve figure out how to get what you need and have fun! Rosalind

]]> By: Nickie http://workingwithchronicillness.com/2007/07/11/do-you-think-of-yourself-as-someone-who-lives-with-a-chronic-illness/#comment-1055 Nickie Wed, 11 Jul 2007 17:50:24 +0000 http://keepworkinggirlfriend.com/2007/07/11/do-you-think-of-yourself-as-someone-who-lives-with-a-chronic-illness/#comment-1055 I have Complex Regional Pain Syndrome Type 1, and will search for information on chronic illness, or, more frequently, chronic pain. I was born blind, and have always learned that that can impact my life. I think it's okay to admit I have health problems and disabilities, but I try to avoid dwelling on it. That's harder to do when symptoms flare, though. My philosophy is "yes, I have CRPS and am blind, but that doesn't stop me from living life." It's not even that I'm particularly strong, just that I'm stubborn and want to enjoy life. I have Complex Regional Pain Syndrome Type 1, and will search for information on chronic illness, or, more frequently, chronic pain. I was born blind, and have always learned that that can impact my life. I think it’s okay to admit I have health problems and disabilities, but I try to avoid dwelling on it.

That’s harder to do when symptoms flare, though. My philosophy is “yes, I have CRPS and am blind, but that doesn’t stop me from living life.” It’s not even that I’m particularly strong, just that I’m stubborn and want to enjoy life.

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