Guest guest Posted May 12, 2001 Report Share Posted May 12, 2001 No, Rosemary, but thank you for asking; I was (unfortunately, accurately) dia gnosed with it when I was nineteen. I have the relapsing/remitting variety, which has not been too bad until this year--UGH! I call it my lapsing synapses, or multiple surprises; I also have epilepsy (since birth) due to hydrocephalus of prematurity, arthritis (severe), diabetes and reflex sympathetic dystrophy, etc. It all SOUNDS so awful along with cf, but I have had an active career, education to the hilt, and worked until I was about 54, and only quit because of the reflex sympathetic dystrophy (you don't want that one!) I have been so lucky, despite surgeries et. al., and it just kills me when I am in the hospital and some dumb nurse comes in and informs me that 1) I look 20 years younger than my " stated age; " 2) I look as if nothing were wrong with me; and 3) " what brings you in here anyway? Are you going home tomorrow? " Now I grant you that I am a " well-nourished " 5' 10 " plus, but , gosh, she's looking at me in a gown under a sheet; all she can see is my olive-skinned, pink cheeked (in the past due to Prednisone for the MS) face! (I take Decadron now) It's enough to energize me, I'll tell you. I don't want to be made to feel guilty about taking good care of a body my size! Funny, cause my cfer who had far better medical care from birth than I did until about age 25, is only 5' tall--stretched and in the morning! Hefty, though, and a real athlete! Not that I wasn't, but arthritis pretty well made me a good spectator! Thank you for your concern. How are those boys doing? Will you have a passably good Mother's Day? Hang in there! (That's why they give me a trapeze bar in the hospital, so I can " hang on! " ) Love from our house to yours, n Rojas who keeps trying to " adjust " to all of this; sometimes I give up and just laugh at the absurdity of it all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2001 Report Share Posted May 12, 2001 No, Rosemary, but thank you for asking; I was (unfortunately, accurately) dia gnosed with it when I was nineteen. I have the relapsing/remitting variety, which has not been too bad until this year--UGH! I call it my lapsing synapses, or multiple surprises; I also have epilepsy (since birth) due to hydrocephalus of prematurity, arthritis (severe), diabetes and reflex sympathetic dystrophy, etc. It all SOUNDS so awful along with cf, but I have had an active career, education to the hilt, and worked until I was about 54, and only quit because of the reflex sympathetic dystrophy (you don't want that one!) I have been so lucky, despite surgeries et. al., and it just kills me when I am in the hospital and some dumb nurse comes in and informs me that 1) I look 20 years younger than my " stated age; " 2) I look as if nothing were wrong with me; and 3) " what brings you in here anyway? Are you going home tomorrow? " Now I grant you that I am a " well-nourished " 5' 10 " plus, but , gosh, she's looking at me in a gown under a sheet; all she can see is my olive-skinned, pink cheeked (in the past due to Prednisone for the MS) face! (I take Decadron now) It's enough to energize me, I'll tell you. I don't want to be made to feel guilty about taking good care of a body my size! Funny, cause my cfer who had far better medical care from birth than I did until about age 25, is only 5' tall--stretched and in the morning! Hefty, though, and a real athlete! Not that I wasn't, but arthritis pretty well made me a good spectator! Thank you for your concern. How are those boys doing? Will you have a passably good Mother's Day? Hang in there! (That's why they give me a trapeze bar in the hospital, so I can " hang on! " ) Love from our house to yours, n Rojas who keeps trying to " adjust " to all of this; sometimes I give up and just laugh at the absurdity of it all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2001 Report Share Posted May 13, 2001 n, You truly are and inspiration to us all. You have the best attitude in the world! Never once have I heard you complain, so I guess that's what makes you so strong. My sister has reflex sympathetic dystrophy. She has symptoms since she was 10 but wasn't diagnosed till she was 13. It was so awful to see her suffer with pain at such a young age. She is 24 now and doing well. Thank for being here, I've learned a world of knowledge already. The best of Mother's Day to you! Stein......mom to CF (11 mo) & Tori wo/CF (3 1/2 yr) Re: n /reply regarding MS No, Rosemary, but thank you for asking; I was (unfortunately, accurately) dia gnosed with it when I was nineteen. I have the relapsing/remitting variety, which has not been too bad until this year--UGH! I call it my lapsing synapses, or multiple surprises; I also have epilepsy (since birth) due to hydrocephalus of prematurity, arthritis (severe), diabetes and reflex sympathetic dystrophy, etc. It all SOUNDS so awful along with cf, but I have had an active career, education to the hilt, and worked until I was about 54, and only quit because of the reflex sympathetic dystrophy (you don't want that one!) I have been so lucky, despite surgeries et. al., and it just kills me when I am in the hospital and some dumb nurse comes in and informs me that 1) I look 20 years younger than my " stated age; " 2) I look as if nothing were wrong with me; and 3) " what brings you in here anyway? Are you going home tomorrow? " Now I grant you that I am a " well-nourished " 5' 10 " plus, but , gosh, she's looking at me in a gown under a sheet; all she can see is my olive-skinned, pink cheeked (in the past due to Prednisone for the MS) face! (I take Decadron now) It's enough to energize me, I'll tell you. I don't want to be made to feel guilty about taking good care of a body my size! Funny, cause my cfer who had far better medical care from birth than I did until about age 25, is only 5' tall--stretched and in the morning! Hefty, though, and a real athlete! Not that I wasn't, but arthritis pretty well made me a good spectator! Thank you for your concern. How are those boys doing? Will you have a passably good Mother's Day? Hang in there! (That's why they give me a trapeze bar in the hospital, so I can " hang on! " ) Love from our house to yours, n Rojas who keeps trying to " adjust " to all of this; sometimes I give up and just laugh at the absurdity of it all. Quote Link to comment Share on other sites More sharing options...
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