Guest guest Posted November 27, 2001 Report Share Posted November 27, 2001 I'd love for her to talk to you! Thanks so much for the offer. But I'd probably get in trouble. She might think I was trying to make her look bad. She knows that I've got CMT and stuff, but honestly, sometimes, I don't think she truly understands what I need. We get in fights a lot over CMT stuff. I open my mouth and say stuff I probably shouldn't and that just makes things worse. Like seriously, it's just so hard to explain myself without me saying something the wrong way or having her not understand. I need to work on staying calm rather than yelling. It's just that CMT is a touchy subject and I think if I mentioned anything to her about talking to people so she understood more, that perhaps I might insult her. I know that sounds kind of strange, I don't know if you understand what I am saying. But I am so thankful I have to talk to and at least know I am not going insane for wanting things made a little easier. THANKS! ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2001 Report Share Posted November 27, 2001 Hey , It's Judy again. When we were diagnosised back in 1976, the doctor told my mom " It's no big deal and they (me & my brother) wouldn't even notice they have it. " So, this is what my mom told us. We were both afraid to tell my mom when we were having trouble because she wouldn't believe us, because of what the doctor said. It wasn't until I had six orthpaedic surgeries to correct my feet when I was 17 that my mom started to get an idea, duh - but she was still in denial. Now I'm 36 and she finally gets it. She's in such bad shape and it took me getting a wheelchair to realize how 'serious' it was - mostly because me & my brother tried to HIDE things - because there is no worse feeling then having someone NOT believe you. It's because it can appear to be so invisible to some people. People can't SEE fatigue, they can't SEE pain. I wish I had some really great advice, aside from the anology suggestion, but if you need to 'vent' you can email, directly if you want, I don't mind. I'll be here to listen. Peace & love, Judy g. shannon marzinski wrote: > > I'd love for her to talk to you! Thanks so much for the offer. But I'd > > probably get in trouble. She might think I was trying to make her look > > bad. She knows that I've got CMT and stuff, but honestly, sometimes, I > > don't think she truly understands what I need. We get in fights a lot > over CMT stuff. I open my mouth and say stuff I probably shouldn't and > > that just makes things worse. Like seriously, it's just so hard to > explain myself without me saying something the wrong way or having her > > not understand. I need to work on staying calm rather than yelling. > It's > just that CMT is a touchy subject and I think if I mentioned anything > to > her about talking to people so she understood more, that perhaps I > might > insult her. I know that sounds kind of strange, I don't know if you > understand what I am saying. But I am so thankful I have to talk > to > and at least know I am not going insane for wanting things made a > little > easier. THANKS! > ________________________________________________________________ > GET INTERNET ACCESS FROM JUNO! > Juno offers FREE or PREMIUM Internet access for less! > Join Juno today! For your FREE software, visit: > http://dl.www.juno.com/get/web/. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 hi shannon, i might have a little idea about CMT, but i have a friend who has. although, we just chat on irc, but i can feel that it's difficult for him to explain or say something about him. but in my point of view and maybe, with your love, i think that it is best that she fully understands about your conditions so, she knows how to deal with you. i think that openness keeps the relationship strong and i hope that you will find a way to make her understand. ))) Richlyn shannon marzinski <butterflypower@...> wrote: I'd love for her to talk to you! Thanks so much for the offer. But I'd probably get in trouble. She might think I was trying to make her look bad. She knows that I've got CMT and stuff, but honestly, sometimes, I don't think she truly understands what I need. We get in fights a lot over CMT stuff. I open my mouth and say stuff I probably shouldn't and that just makes things worse. Like seriously, it's just so hard to explain myself without me saying something the wrong way or having her not understand. I need to work on staying calm rather than yelling. It's just that CMT is a touchy subject and I think if I mentioned anything to her about talking to people so she understood more, that perhaps I might insult her. I know that sounds kind of strange, I don't know if you understand what I am saying. But I am so thankful I have to talk to and at least know I am not going insane for wanting things made a little easier. THANKS! ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 I am so sorry you are going through this nightmare that we have all been through but I am happy you know the truth despite all the dr. lies.... we have all witnessed the denial, the looks by others as if we are crazy but have stood strong. Poop on anyone that doesn't fully understand your illness - that is the point I am at. I am tired of feeling bad and worrying about it... they just don't "get it" and never will as they are living the hell that we are. The girls here are truly the only ones that genuinely understand. Be strong and keep praying hard. This is what got me through. As far as the money goes - I understand that nightmare, too. Keep your head up and do what you have to do - the lord works in mysterious ways and you will seem to "find answers" when you least expect them. This is what happened to me when I needed explant. We were broke and I was freaking out - next thing you know we got our taxes done and our rebate was 7 times what it had ever been before ... coincidence - who knows. All I know is that I found the money and the toxic bags are out any NOBODY will tell me otherwise than that they were making me sick or they will get an earful. Mine were full of mold, staph, etc., -nasty and I pray each day to be thankful they are out of my body. Keep your head up!!! We are here whenever you need us or email me privately and I will give you my number if you would like to talk. love shari Quote Link to comment Share on other sites More sharing options...
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