Comments on: When you just have to keep working - and it ain’t easy. http://workingwithchronicillness.com/2006/12/18/when-you-just-have-to-keep-working-and-it-aint-easy/ Sun, 12 Oct 2008 22:03:59 +0000 http://wordpress.org/?v=2.5 By: Diana http://workingwithchronicillness.com/2006/12/18/when-you-just-have-to-keep-working-and-it-aint-easy/#comment-22 Diana Thu, 04 Jan 2007 19:05:37 +0000 http://lumina.neoverve.com/~admin85/2006/12/18/when-you-just-have-to-keep-working-and-it-aint-easy/#comment-22 As I read your stories, I am heartened and feel so much less alone. My disability is pancreatitis; I have had chronic severe pain for the past 14 months and other issues dating back over two years. I want very much to be stronger. But what is coming through loud and clear here is "balance", and perhaps I have to think more about this in the context of my own life. Thank you!! As I read your stories, I am heartened and feel so much less alone. My disability is pancreatitis; I have had chronic severe pain for the past 14 months and other issues dating back over two years. I want very much to be stronger. But what is coming through loud and clear here is “balance”, and perhaps I have to think more about this in the context of my own life. Thank you!!

]]> By: Rosalind http://workingwithchronicillness.com/2006/12/18/when-you-just-have-to-keep-working-and-it-aint-easy/#comment-15 Rosalind Wed, 27 Dec 2006 01:13:02 +0000 http://lumina.neoverve.com/~admin85/2006/12/18/when-you-just-have-to-keep-working-and-it-aint-easy/#comment-15 Miriam, Invisible, visible - it is all difficult because whatever it is, it gets in our way. In case you don't know this already, accessible doors are an ADA issue - just depends on how much of a fuss you want to make. Keep at it, though. Just remember you're doing it for you. Miriam, Invisible, visible - it is all difficult because whatever it is, it gets in our way. In case you don’t know this already, accessible doors are an ADA issue - just depends on how much of a fuss you want to make. Keep at it, though. Just remember you’re doing it for you.

]]> By: Miriam http://workingwithchronicillness.com/2006/12/18/when-you-just-have-to-keep-working-and-it-aint-easy/#comment-14 Miriam Tue, 26 Dec 2006 20:19:20 +0000 http://lumina.neoverve.com/~admin85/2006/12/18/when-you-just-have-to-keep-working-and-it-aint-easy/#comment-14 I have multiple invisibile disabilities. They have gotten so bad that they blur the line between visible and invisible disabilities. That said I want to keep working. I love working. My worst nightmare (since I was 5 years old) is being trapped in one place doing nothing all day. Too bad one of my disabilities triggers full body paralysis. I have learned to balance my career and disabilities, but I constantly have a tough time dealing with other people's inability to accommodate someone with disabilities. As long as I am the one making all the accommodations, then they can "handle" me being disabled. However, simple things like accessible doors after years of my requesting them is beyond most people's comprehension. I have multiple invisibile disabilities. They have gotten so bad that they blur the line between visible and invisible disabilities. That said I want to keep working. I love working. My worst nightmare (since I was 5 years old) is being trapped in one place doing nothing all day. Too bad one of my disabilities triggers full body paralysis.

I have learned to balance my career and disabilities, but I constantly have a tough time dealing with other people’s inability to accommodate someone with disabilities. As long as I am the one making all the accommodations, then they can “handle” me being disabled. However, simple things like accessible doors after years of my requesting them is beyond most people’s comprehension.

]]> By: Jenni Prokopy, ChronicBabe.com http://workingwithchronicillness.com/2006/12/18/when-you-just-have-to-keep-working-and-it-aint-easy/#comment-11 Jenni Prokopy, ChronicBabe.com Thu, 21 Dec 2006 18:48:15 +0000 http://lumina.neoverve.com/~admin85/2006/12/18/when-you-just-have-to-keep-working-and-it-aint-easy/#comment-11 rosalind, joan - love the new blog! this is going to be a valuable resource for so many women - working while managing multiple chronic illnesses (heck, even ONE illness) is so challenging. i'm looking forward to reading your tips and sharing this resource with my readers. there are not enough people writing on this topic. hope you can also get some guest experts to chime in on any research, legislation, insurance and other issues as appropriate. this is a great start! cheers - rosalind, joan - love the new blog! this is going to be a valuable resource for so many women - working while managing multiple chronic illnesses (heck, even ONE illness) is so challenging. i’m looking forward to reading your tips and sharing this resource with my readers. there are not enough people writing on this topic. hope you can also get some guest experts to chime in on any research, legislation, insurance and other issues as appropriate. this is a great start! cheers -

]]> By: patty http://workingwithchronicillness.com/2006/12/18/when-you-just-have-to-keep-working-and-it-aint-easy/#comment-10 patty Thu, 21 Dec 2006 13:19:51 +0000 http://lumina.neoverve.com/~admin85/2006/12/18/when-you-just-have-to-keep-working-and-it-aint-easy/#comment-10 This is a wonderful connection for people; it will be a comfort and and inspiration. Great job! This is a wonderful connection for people; it will be a comfort and and inspiration. Great job!

]]> By: Sherril Johnson http://workingwithchronicillness.com/2006/12/18/when-you-just-have-to-keep-working-and-it-aint-easy/#comment-8 Sherril Johnson Wed, 20 Dec 2006 18:23:20 +0000 http://lumina.neoverve.com/~admin85/2006/12/18/when-you-just-have-to-keep-working-and-it-aint-easy/#comment-8 Impressive all around. Great "Resources" list. Thank you! Impressive all around. Great “Resources” list. Thank you!

]]> By: Lisa http://workingwithchronicillness.com/2006/12/18/when-you-just-have-to-keep-working-and-it-aint-easy/#comment-5 Lisa Wed, 20 Dec 2006 01:55:11 +0000 http://lumina.neoverve.com/~admin85/2006/12/18/when-you-just-have-to-keep-working-and-it-aint-easy/#comment-5 As many of us who will read your blog can understand...We get it because we live it. There seems to be a battle we undertake as women to do it all regardless of our health issues. Invisible disabilities have unique challenges and it is strange to say that many of us would prefer if the world could see why we are not able to be 'like everyone else'. But those of us who tackle the work place, our families, our disease and our own needs understand that the world will not stop because we are having a bad day...so we better figure out a way to balance it all! My training started early, age 12 diagnosed with a heart disease that had already killed 2 in my family, hypertrophic cardiomyopathy, HCM. The symptoms have always been there - shortness of breath, chest pain, palpitations, dizziness, passing out and then the fun stuff like the stroke, pacemaker and defibrillator. My sister worked until the day she died of HCM in 1995 - during the last few weeks of her life she said "I think my job is killing me", she was kidding and I said, "no if anything gets you it will be your heart", at the age of 36 it was her heart. I am now 38, I have lived longer than my sister ever got the chance to and I have learned a great deal I wish I could tell her now. Balance work, family and your health. Know when to say NO, know when to pace yourself and know when to ask for help. Life has deep meaning and many of us have great skills to share with the world, never let your condition hold you back from your dreams...just adjust your sails and let it carry you. hang in there girls... Best of luck with the Blog I am sure it will help many people!! As many of us who will read your blog can understand…We get it because we live it. There seems to be a battle we undertake as women to do it all regardless of our health issues. Invisible disabilities have unique challenges and it is strange to say that many of us would prefer if the world could see why we are not able to be ‘like everyone else’. But those of us who tackle the work place, our families, our disease and our own needs understand that the world will not stop because we are having a bad day…so we better figure out a way to balance it all!
My training started early, age 12 diagnosed with a heart disease that had already killed 2 in my family, hypertrophic cardiomyopathy, HCM. The symptoms have always been there - shortness of breath, chest pain, palpitations, dizziness, passing out and then the fun stuff like the stroke, pacemaker and defibrillator. My sister worked until the day she died of HCM in 1995 - during the last few weeks of her life she said “I think my job is killing me”, she was kidding and I said, “no if anything gets you it will be your heart”, at the age of 36 it was her heart. I am now 38, I have lived longer than my sister ever got the chance to and I have learned a great deal I wish I could tell her now. Balance work, family and your health. Know when to say NO, know when to pace yourself and know when to ask for help. Life has deep meaning and many of us have great skills to share with the world, never let your condition hold you back from your dreams…just adjust your sails and let it carry you.

hang in there girls…

Best of luck with the Blog I am sure it will help many people!!

]]>