Guest guest Posted January 19, 2002 Report Share Posted January 19, 2002 heidi coralie has dealt with RP since 1995. the worst part of dealing for her (i beleive) it's she never can plan: the flare come and stop without "inform " LOL(she's 14 year's old) has dealt with RP since 1998 The worst for him it's unusual . He 's very angry when a flare come.(he's 11 year's old) Nicolas has dealt with rp since 1999 the worst for him it's to admit it (he's now 19 year's old). see you later for the part 3 lol amitiés *Marie-Pia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2002 Report Share Posted January 20, 2002 --- Heidi Main wrote: > Now to Part 2 . > How have you dealt with it since ?? > What is the worst part of dealing with RP ?? > Yes we will do a part 3 to later on. > So please think about it and chare your story with > us. This is how we learn. I thank you for being a > part of this great group. > Heidi > Oh Heidi, you are a hard taskmaster, always cracking that whip! How I have dealt with RP since diagnosis is to stay in really close touch with my rheumy, take my med's as prescribed, and just try to ignore it. Some people would call it denial! Last week, with my trial and failure at taking care of my grandkids, I got a wake-up call that I can't live in denial about this any longer. When I can I like do as much walking as my joints allow. I keep active running my household, helping to raise our 9 year old grandson, homeschooling our 14 year old son, and spending time with my sisters. I do realize that I need to pace myself better. Having faith in, and reliance on God is my anchor! For me the worst part of dealing with RP is possibly on those days when you feel like death warmed over and someone says, " oh, you can't be sick, you look so good " . Or, when family members expect me to be what I was 20 years ago, and don't make allowances for the changes RP has brought to my life. Or, when the desire is still so strong to be that " super-woman " that I once was.......These are all very hard for me to deal with. Just admitting that I am sick! Yikes, I'm rambling, so I should just stop! Looking forward to seeing everyone's response to part 2, and hearing what Heidi is cooking up for part 3!! Love to you all, Sharon ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2002 Report Share Posted January 21, 2002 Well, Heidi, here it goes.... ! How have I dealt with RP? I've tried my best to keep a possitive attitude and I swear I'm not going to let this darn disease beat me. It is hard at times thought, I get discouraged when I can't do something that I use to do. I wish I could play more with my grand kids. I wish the family and friends would understand more about this disease and know that when I can't do something, I REALLY can't do it. Dealing with the weight gain from the pred has been hard on me too. I know Heidi, You will say we are the same beautiful person on the inside, but when no one recognizes you, it is hard to deal with. I keep my dr appts and take my meds on time. I have good days that I cherish and bad days that I just go with. No use fighting them. LOL I take one day at a time and am truly blessed , and look forward to the next. hugs Quote Link to comment Share on other sites More sharing options...
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