tag:blogger.com,1999:blog-8651943964119399209.post7515535496183869862..comments2023-10-23T15:39:50.048-04:00Comments on Where Did I Get This Lemon?: Invisible Illness Part 2: What NOT To SayLauren Butare-Smith, DVMhttp://www.blogger.com/profile/11946665842214870896noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-8651943964119399209.post-6798688526505852592009-11-14T01:30:51.647-05:002009-11-14T01:30:51.647-05:00I feel it too. No POTS for me just severe dysauton...I feel it too. No POTS for me just severe dysautonomia for 3 yrs (I'm sure I'll get a label eventually at the moment my docs think I may be my own disease, woo hoo). People without chronic illness don't get it and often say offensive things without meaning it. "Stay positive" "Don't stress", "they'll find an answer don't give up". "but you look so good". I to am positive but I am also realistic and I know I am getting worse not better, that my doc's are at the end of their knowledge. I'm at a place where I can cope with that and although I still have to think about it because it's in my face I can also put it aside when I need to. I wish it was stress, I'd take a valium and the blood would instantly flow from my purple feet to my brain! I think many comments stem from their own stress and their inability to understand that our lifestyle changes are not a choice. Oh well what can you do. I now surround myself with people who understand, I paint, and blog for myself and 12 More Pages. You have to find a way to not let the comments get to you but it can be hard some days.Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-52395828551530627482008-09-08T12:46:00.000-04:002008-09-08T12:46:00.000-04:00Thank you so much for your comment iceskr189. I k...Thank you so much for your comment iceskr189. I know how hard it can be to have people not understand what you are going through. Since you have POTS, if you haven't already, make sure to join the forums on dinet.org and ndrf.com. It can be so helpful to talk to others dealing with the same kind of problems. Please feel free to send me a personal email as well if you want to talk (lmbutare@hotmail.com). If your Mom is having trouble understanding what you are going through, you may want to try showing her the posts to see if that helps her. I think a lot of people don't even realize how much little things can hurt. Thanks again for posting your comment and i hope we can get in touch.<BR/><BR/>LaurenLauren Butare-Smith, DVMhttps://www.blogger.com/profile/11946665842214870896noreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-72756982746545743282008-09-04T02:38:00.000-04:002008-09-04T02:38:00.000-04:00i can truely say i know exactly how you feel. i to...i can truely say i know exactly how you feel. i too have POTS and orthostatic hypotesion. I dont work or go to school and im not allowed to drive. The most frustrating thing with me is when im telling my mom how im not feeling well at all and she basically turns it into her ordeal by saying yeah i have low blood pressure too. im not looking for pity but gosh im tired of people telling me to have a positive outlook or to be stronger than it. my only answer is that if they could have it for just ONE day they would realize.icesktr189https://www.blogger.com/profile/05259658341482623901noreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-8151338785774338122008-09-04T02:37:00.000-04:002008-09-04T02:37:00.000-04:00This comment has been removed by the author.icesktr189https://www.blogger.com/profile/05259658341482623901noreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-62922988766467143152008-09-04T02:36:00.000-04:002008-09-04T02:36:00.000-04:00i can truely say i know exactly how you feel. i to...i can truely say i know exactly how you feel. i too have POTS and orthostatic hypotesion. I dont work or go to school and im not allowed to drive. The most frustrating thing with me is when im telling my mom how im not feeling well at all and she basically turns it into her ordeal by saying yeah i have low blood pressure too. im not looking for pity but gosh im tired of people telling me to have a positive outlook or to be stronger than it. my only answer is that if they could have it for just ONE day they would realize.icesktr189https://www.blogger.com/profile/05259658341482623901noreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-2430397855995182812008-09-04T02:35:00.000-04:002008-09-04T02:35:00.000-04:00This comment has been removed by the author.icesktr189https://www.blogger.com/profile/05259658341482623901noreply@blogger.comtag:blogger.com,1999:blog-8651943964119399209.post-13831340089301211852008-07-25T10:29:00.000-04:002008-07-25T10:29:00.000-04:00After being diagnosed with Multiple Sclerosis 12 y...After being diagnosed with Multiple Sclerosis 12 years ago I found it very difficult to tell people. However, after my husband and I had a month to try to cope with the news, I told my family and a few friends. Everyone was very concerned. However, someone asked me if I thought my children could get "it". At the time, my kids were 7 and 10. My facial expression must have been, "Oh my God, I never thought of that." Now I have to worry about their health as well as my own. I was devastated. That was probably the most disturbing question I have ever been asked. So don't ask if the children could get "it".Anonymousnoreply@blogger.com