Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 In a message dated 5/28/2002 11:52:52 AM Pacific Daylight Time, lisarich.com@... writes: > . I really don't believe you have anything to worry about, but I would let > you doctor know you have CMT. > > > Thank you you were a big help to me. I hate to bring up CMT to some doctors ever since that one doctor last summer thought it was a sexually transmitted disease. Will laser on my face be safe? Does anyone know? jenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2002 Report Share Posted August 17, 2002 , Yes and no on being hindered. I do not have the physical stamina that I once had and yes, the fatigue comes about more often, especially so in the last couple of years. My true love was ICU/Critical Care nursing. In nursing you have so many different avenues in which to work. I went into business for myself in 1995 as an independent medical case manager. I work full-time with federally injured employees so I am around people with injuries and disabilities all of the time. To all reading this, if I can pass on one bit of insight/advice, each one of us needs to live our lives to the fullest extent possible. Please do not waste ANY AMOUNT of time on feeling sorry for yourself or getting angry over the ignorances of others. Use it as an opportunity to make a positive difference in someone else's life whether it is returned to you or not. If your heart and motives are true and positive, through that you will be blessed more than you can ever imagine. I assure you, there is always someone who is more physically challenged than you or me. Blair ----- Original Message ----- From: " john janosik " <secureit@...> < > Sent: Friday, August 16, 2002 11:22 PM Subject: A RN-To B. > You stated you are a RN. Does your CMT hinder you in your job? When > I was younger I managed to work around my CMT, now it is more controlling of my life style. It has gone more into my arms and hands which give me problems when the task has me repeating the chore. > > Why are we so positive? Because at we know that 'positive' means: > People (with CMT) Outsmarting Stress in Togetherness (and) in > Victory Experientially. > > is Charcot Marie Tooth Universal Services - for you, your loved ones, > the medical and scientific community, and anyone who wants to learn > how CMT/HMSN affects each of us through experiential sharing. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2003 Report Share Posted January 7, 2003 Hi , Aussie here... Island way down South. 37 c today and have been out fishing this morning 3 nice schnapper one about 5 lbs. I would like to know more about your compensation as I have a claim in at the victims of crimes tribunal also taking civil action because of an attempted murder on me 2 years ago. Aussie . ----- Original Message ----- From: " Harkins " <mharks1@...> < > Sent: Monday, January 06, 2003 9:11 PM Subject: Introduction > Gidday! > > My name is and I live on the Sunshine Coast in > land Australia (Current weather report is 25 at > 8.30pm, no wind, big surf and the fish are biting). > I have " listened " to this forum for just over a year > now and thank you all for your input! > > I have just completed a succesfull insurance claim for > CMT obtaining a payout on a " Total and Permanent > Disability Pension " . The circumstances surrounding > this event and the outcome are nothing short of a > miracle and I will share it with you at a later time. > > The purpose of my contact is just to say " hello " and, > as I step out from behind the curtain that forms the > opening to this stage (behind which I am sure many > me's lurk), I feel good to have completed my epic > journey through the " obstacle course " of insurance and > advise you all that if you feel that you are entitled > to compensation then go for it!!! > > Regards, > > > > > Rehabilitation and CMT? Do you need HOPE? Find out what CAN be done - > we recommend this http://www.aicmt.org/books.htm > > is Charcot Marie Tooth Universal Services. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2003 Report Share Posted January 7, 2003 Greetings Aussie , Have played golf at Island, enjoyed camping at the Anchor Belle and love the cray fish raffles at Easter. Drop me a note at mharks1@... to continue our conversation, as others may find it uninteresting! Regards, --- lebrian <lebrian@...> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2003 Report Share Posted February 3, 2003 : My father still hasn't been diagnosed at 81. He has all the symptoms of CMT, has had many neurologists do studies on him and they have diagnosed him with many different things, one of them being arthritis. He is a veteran and utilizes the VA. I had gone with him to one of his appointments last year, was able to give the information that I had (website, etc) to his DR. and got a neurologist appointment which has now been cancelled three times and not rescheduled again. I therefore, decided that I had to be the leader in the search for a proper diagnosis. I was diagnosed with CMT last year, but wanted proof. I contacted my local MDA, was given a number to call in Philadelphia, did that, had my first appointment in January, have a second this month for work and another nerve conduction study and will continue from there. Interestingly, when he tested my reflexes at the knee, I had one - very little--but I had one (hadn't for about ten years !!) Went there to see if I could get a DNA test done and now I have opened a can of worms!! Hopefully, by the time I am finished, I will know for sure and will be able to further help my father and my children. It is a very interesting " disease " . Sharon O. Knowledge is power. Educate yourself and your doctor about CMT. http://www.icongrouponline.com/health/Charcot-Marie-Tooth.html is Charcot Marie Tooth Universal Services. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2003 Report Share Posted December 8, 2003 , How did everything go today with your foot procedure? Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Thanks for thinking of me Barb, things went well, I am in pain but hopeful that this will be the cure I have been dreaming of! I want to be able to jog again someday hee hee! Hugs girl, oh and I wrote a more detailed update in another post. thanks In , " barbsul2002 " <BARBY4271@A...> wrote: > , > How did everything go today with your foot procedure? > > Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 I can't believe that I don't know what zone I am in-I do know that I live in Las Vegas and when I call Florida it is 3 hrs. later there. Quinn gets up at 9AM and I lay on the floor until noon stretching and moaning. So, you can call me then! Isn't that pathetic? Poor Quinn sees seseme street and Barney for 3 hrs. straight every morning! I feel so guilty- Have a great trip! Love, Daryl ----- Original Message ----- From: JOSEPH PALANCA Sent: Friday, February 13, 2004 11:52 AM Subject: Re: Hey Darly, your son sounds cute too. And good adivse on waiting till he's 3 for potty training. 14 KGold advise! Kudo's to that doc. I will call you, I have a great long distance unlimited plan, so Ill call you, dont worry about calling back. You know Monday mornings around 9 am central are good for me, or other wise weekends at night are good. Tell me what is a good time to call?And what Zone are you in? Also, we are going to Shipshewanna, Ind about 3 hours form home tonight...for Amish land this weekend, a little getaway, so I won't be back till Sunday. We go there to shop and and also we have to pick up some extra chairs. We ordered a mission dining table set last year, and got it, but I recently ordered 2 more chairs as the 8 werent enough for all my family. (I also have card tables, and a kitchen set) God thanksgiving, we had 21 people. What a 1st thanksgiving! He He. (I was so stressing!And the corn was so hot it blew up this glass bowl, guess it wasnt heat resistant...and the frickin'corn flew everywhere, all over my mother in law's sweater, well she was arguing, more like driving me nuts all day the stinking temp the turkey was being cooked in...So when the corn blew up, I Guess God works in mysterious ways...HA HA- I do love her, but it was so worth the mess) Daryl ,all I can say about the carb thing and sugat thing, is as hard as it sounds, you can get over cravings for sweets and pasta, by eliminating them for 2 weeks straight. By then the cravings are gone, your insulin is down, your yeast/candida is dying, you lose weight, energy is back, your immunity is strengthening, your white blood cells are increasing, your hormones are balancing.Then bam you crave no more. You get better, and what do eat? More and more veggies and fruits. And that is good.So you just have to get over the mountain ! You can do it Daryl, If I can, you can do it. Love julie >From: "Daryl " >Reply- >>Subject: Re: >Date: Fri, 13 Feb 2004 10:56:23 -0800 > > Thanks for the E-mail, you sound so happy! I would love to have another baby someday. The thought of Quinn being an only child seems so sad. Right now I couldn't care for a baby, but hopefully things will change. > >The thing that I admire about you is that you are so great about keeping up with all these detox programs. I keep thinking that I'm not getting better because I am not good about taking supplements and staying on a good diet. I must have a candida problem because only sweet foods sound good to me. Also, being a non-meat eater, I love carbs! Pasta and breads are a big part of my diet. I need to make a major change, I just wish that I could control these sugar cravings. I hope that I can get some of your strong will to get better. > >Your son sounds adorable! Aren't we lucky to have them? I've heard that potty training is a real pain. We have a potty video that is hilarious! There is a song called "She's a super dooper pooper!" My Dr. said not even to worry about it until he's 3. That is in Sept. He's been saying more words and the terrible 2's temper problems sometimes drives me to tears. I feel like I'm not strong enough to handle the tantrums sometimes. Luckily, my husband works at night so he is around. Quinn brings me so much happiness though. I honestly don't think that I would be here if it weren't for him. He makes me feel like I'm the most special person in the world. I know that you know what I mean. I hope that you get pregnant right away, it's no fun waiting! > >Will you tell me some of the supplements that you used after your explant? If you could call me sometime, I would love it. I could really use the help-My # is 702-361-6442. If you call me with your # , I will call you right back. You and Patty are like role models to me because you both worked so hard to get better-I just feel like I'm tired and lazy! >Love you!!! Daryl > ----- Original Message ----- > From: JOSEPH PALANCA > > Sent: Friday, February 13, 2004 8:06 AM > Subject: Daryl > > > Daryl ,on to good topics- like motherhood! how is your two year old son? I know when we have tlaked that was one thing we had in common, was our little guys....My Tyler is 3 1/2 now, I cant believe it! He's in pre school prep, two days a week (so I can go to curves and to socialize him) and is almost potty trined. Stays dry all day in underwear, goes pee pee all the time on the potty, as for the other topic, oh! It is such a pain in the butt. He does not want to push on the potty, or sit there for that matter. No matter how many potty books, stickers, or treats, rewards too... I have tried everything, and am now just letting it go, and allowing him to choose when he wants to do it on the potty. The minute I put his pull ups on at night with his pj's, he goes poo poo in them! So a few times, I didnt put them on him, and you know what he did? Held it - ot so contipated, once he held it for 4 days! Dont want to start that cycle... forget that! Hows your little one? I swear Tyler is so smart, I think he knows what I am up to, and will do anything to get around it ! > > How is your little guy? Talking I bet alot. Tyler wont shut up!The other day I hugged him in bed, I call them Big Bear hugs, and as I squeeze him I lit out a bear noise, then he gives me a little bear noise. We call them bear hugs. We as I walked out of room, and said goodnight, he looked at me and said" Mommy, you not a bear anymore. Your a mommy," It was so funny, he was telling me, no silly you arent a bear, but a person! I said "I know Tyler, we do it for fun" And he just looked at me like I was nuts.Can you believe it? Broke my heart, he is starting to think without me! > > I want to have another baby this year, just straightening up my thyroid and all, right now. I figure this summer, God willing, if He wants me to. How have you been feeling/Darly, I gotta tall you, a year after explant is so much better than even 6 months. The diet (no sugar/low or no carb) def helps to clean things up . I hope you are feeling better, and hang in there, it takes time, esp for us who had them so long. I also noticed, that the ones like you and me that had implants, then had a baby, its like a double whammy on our bodies, and it takes us longer to heal. We have alot more to address. If you ever want to chat, feel free to email or call me. I think about you and your little guy alot. Love you, > > > > > > > >From: "Daryl " >Reply- >>Subject: Re: Thanks Fiona >Date: Thu, 12 Feb 2004 23:30:40 -0800 > > Thanks for the advice, I have a big box full of vitamins and supplements that I need to start taking. I'm on Duragesic patches and oxycotin for pain and would love to get off of it. > >Have you ever heard of any natural supplements to help pain (I already go to a warm arthritis pool 3 times a week) >I wish that there was a magic pill just to make all the aching pain go away!!! I'm trying to keep up with all the E-mails so that I can get to know everyone again-I have a 2 yr. old who is always clinging to me. >Thanks again!! Daryl > ----- Original Message ----- > From: Fiona Parkinson > > Sent: Monday, February 09, 2004 10:03 PM > Subject: Re: Hi-I'm back!!! > > > Hi ! > > Try taking L-Glutamine, an amino acid which helps keep up serotonin levels > in the brain, we give it to people who are addicted to anything ranging from > cocaine to sugar and carbs....if you are really craving sugar around 5pm, > open up a capsule and melt the powder under your tongue for a quick fix. > It's a natural supplement, can do no harm. Sounds like you might be fighting > candida ? > > Fiona > ----- Original Message ----- > From: daryljean35 > > Sent: Monday, February 09, 2004 9:23 PM > Subject: Hi-I'm back!!! > > > > I haven't been on the group in a few months because we moved and I > > just couldn't get organized enough to figure out how to get back on! > > > > Patty came over to my house and helped me, so here I am! > > I have had terrible health problems for 4 years, abdominal pain, all > > over muscle pain, fatigue, and depression. I can't believe that this > > is my life. I was explanted 9 months ago, after I found Patty on the > > internet and she came over to my house to talk to me. I was thrilled > > to find women with my same problems! For 3 yrs. I went from Dr. to > > Dr. with them telling me that my implants were not the problem. They > > say that I have fibromyalgia and I should just accept it.I have been > > taking heavy pain meds. for 4 yrs. and most of it doesn't help me > > anymore. I feel like I've been hit by a car the way my muscles ache > > all over! I'm 36, but I feel like I'm 96. > > > > Anyway, I'm glad that they are out, but I am still in pain. I haven't > > been doing any detoxing like I should be. I suppose that I was hoping > > that I would just go back to my old self after my explant. I need to > > change my diet and find some other ways to detox. I have these awful > > sugar cravings and I know that sugar is probably making me feel worse. > > > > I had saline implants for 13 yrs. and I am so mad at myself for > > getting them-I wish that I could turn back time. I am married with a > > 2 yr. old son and my husband is very frustrated with my health > > problems. This is not what we hoped for in our life together. > > > > > > Rogene came to Las Vegas and met with us and she has so many great > > suggestions, I just need to start doing some of them! > > Have any of you been detoxing with any luck?? I'd love to have some > > advice! I know that most of you don't know me, but I'd like to get > > back to supporting each other-Love, Daryl > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 Daryl, We are in Pacific time zone. Don't worry about your son, please don't feel guilty about his watching TV while you do your stretching. He is probably really enjoying those TV programs! And he is probably very comforted just knowing you are there with him. Patty ----- Original Message ----- From: Daryl Sent: Friday, February 13, 2004 11:02 PM Subject: Re: To I can't believe that I don't know what zone I am in-I do know that I live in Las Vegas and when I call Florida it is 3 hrs. later there. Quinn gets up at 9AM and I lay on the floor until noon stretching and moaning. So, you can call me then! Isn't that pathetic? Poor Quinn sees seseme street and Barney for 3 hrs. straight every morning! I feel so guilty- Have a great trip! Love, Daryl Quote Link to comment Share on other sites More sharing options...
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