Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Hi everyone! I'm new to the list and am I ever glad to be here. Noone understands what I'm going through. It's hard for others to understand because I look " normal " . I've had Fibromyalgia for 10 years am in my 40's and through the years have learned to cope with the dreaded disease. My family has adapted. My friends know about it. My employers only know as much as they need to know because they don't understand it. I'm getting my Master's Degree and my professors don't understand it because I'm not " handicapped " and I am not seen to have " special needs " . I think the worst thing about this disease is that it's hard for others to know what pain you are in because you appear to look " normal " . Anyway, just wanted to say " Hi " and glad I'm here! Cyndi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Cyndi, I too have fibro and was just diagnosed 2 weeks ago. I am also pursuing my masters. The best thing to do is not let the disease get to you. Keep on doing what is best for you. I often find going to work is the best thing when the pain is so bad, because then you don't think about it as much. Also, having a hobby is also good to deviate yourself from the pain. I know there are days when the pain is acute and bad, but it is good to get yourself to stop from thinking about it too. Ruth Smitycrochet@... Smitycrochet@... Ruth.@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Hi Cyndi, and welcome to the group! I think we can ALL understand too well that " But you don't LOOK sick " attitude! On my really bad days, I feel like coming back with " Yeah, well you don't LOOK stupid either, but looks can be deceiving! " It helps me though, to think it! Like you, the " important " people in my life have coped and adapted. My employer (at least the corporate medical dept) knows the details because I have intermittent FMLA, but they've run me through the mill to get that. I've had 2 opinions, and because my doctor decided to change the amount of time off that I needed, and it doesn't " concur " with what the second doctor said (in other words, it's more generous!), they now want me to see a THIRD doctor. They've brought out all of their hoops for me to jump through! At the local level though, it gets a lot crazier. I have shared all my info with my supervisor, as he's a family friend and a good guy, so he's pretty well informed about my condition and about my FMLA provisions. He also has a daughter with a chronic illness (Crohn's Disease), so he is pretty understanding. However, his hands are tied by the company rules, and by HIS boss, who is a royal ass. This guy watches my every move, checks my production, keeps tabs on my attendance....just waiting for me to make a wrong move so he can " nail " me. Too bad for him that I've only missed one day of work that wasn't FMLA or paid medical leave in the past year and a half, and that my production is very high. I know it makes him mad that he can't touch me! Actually, some people with Fibro do fall under the category of disabled. There are quite a few people who have sucessfully filed for SSI because it's so debilitating for them that they are totally unable to work, and a lot have handicapped placards in their vehicles. I know that when I filed for FMLA, they categorized Fibro as a " serious chronic health condition " . The school you're attending should be willing to work with you in some way, as they do any other student with a chronic illness! Not to do so would be considered discrimination. Okay, I'm off my soapbox now! Welcome again to the group, and I hope you find the understanding and support you need here! Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Hi Cyndi, and welcome to the group! I think we can ALL understand too well that " But you don't LOOK sick " attitude! On my really bad days, I feel like coming back with " Yeah, well you don't LOOK stupid either, but looks can be deceiving! " It helps me though, to think it! Like you, the " important " people in my life have coped and adapted. My employer (at least the corporate medical dept) knows the details because I have intermittent FMLA, but they've run me through the mill to get that. I've had 2 opinions, and because my doctor decided to change the amount of time off that I needed, and it doesn't " concur " with what the second doctor said (in other words, it's more generous!), they now want me to see a THIRD doctor. They've brought out all of their hoops for me to jump through! At the local level though, it gets a lot crazier. I have shared all my info with my supervisor, as he's a family friend and a good guy, so he's pretty well informed about my condition and about my FMLA provisions. He also has a daughter with a chronic illness (Crohn's Disease), so he is pretty understanding. However, his hands are tied by the company rules, and by HIS boss, who is a royal ass. This guy watches my every move, checks my production, keeps tabs on my attendance....just waiting for me to make a wrong move so he can " nail " me. Too bad for him that I've only missed one day of work that wasn't FMLA or paid medical leave in the past year and a half, and that my production is very high. I know it makes him mad that he can't touch me! Actually, some people with Fibro do fall under the category of disabled. There are quite a few people who have sucessfully filed for SSI because it's so debilitating for them that they are totally unable to work, and a lot have handicapped placards in their vehicles. I know that when I filed for FMLA, they categorized Fibro as a " serious chronic health condition " . The school you're attending should be willing to work with you in some way, as they do any other student with a chronic illness! Not to do so would be considered discrimination. Okay, I'm off my soapbox now! Welcome again to the group, and I hope you find the understanding and support you need here! Jen Quote Link to comment Share on other sites More sharing options...
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