Guest guest Posted August 23, 2000 Report Share Posted August 23, 2000 Hi everybody. I would like to introduce myself. My name is and I was diagnosed with RA about 4-1/2 years ago but obviously had it longer than that. I'm 37 now. I'm finally seeing a rheumatologist for the first time next week. I am one of those who just blew it off until I felt very lousy, which I'm at that point now. The joint pains are horrible. I've been doing a lot of research on the web re RA drugs and have settled on Celebrex or Enbrel. I'm a medical transcriptionist by trade. I hate pills too as every single side effect in the world, even down to something simple like amoxicillin, I experience them. I'm very afraid of side effects as I've got to function. I've got a business to run and 4 kids to raise. I started to get into the rut of not wanting to exercise because I felt so lousy but once I did, I was much better. I also dropped 35 pounds because that's the first thing that I will be told to do and my joints don't need the extra weight. I guess I'm just coming here to meet other RA sufferers because nobody really knows what it's like if you tell them it's going to rain in 7 days and it's 95 outside. Thanks for listening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2000 Report Share Posted August 24, 2000 Hi , Pam, Holly to our group ~ Esther ~ JRAage 8.....23 years ~ Carol, (Mom, my typist) ----- Original Message ----- From: <CCouttsRMT@...> < egroups> Sent: Wednesday, August 23, 2000 4:58 PM Subject: Re: [ ] Introduction > Hi everybody. I would like to introduce myself. My name is and I was > diagnosed with RA about 4-1/2 years ago but obviously had it longer than > that. I'm 37 now. I'm finally seeing a rheumatologist for the first time next > week. I am one of those who just blew it off until I felt very lousy, which > I'm at that point now. The joint pains are horrible. I've been doing a lot of > research on the web re RA drugs and have settled on Celebrex or Enbrel. I'm a > medical transcriptionist by trade. I hate pills too as every single side > effect in the world, even down to something simple like amoxicillin, I > experience them. I'm very afraid of side effects as I've got to function. > I've got a business to run and 4 kids to raise. I started to get into the rut > of not wanting to exercise because I felt so lousy but once I did, I was much > better. I also dropped 35 pounds because that's the first thing that I will > be told to do and my joints don't need the extra weight. > > I guess I'm just coming here to meet other RA sufferers because nobody really > knows what it's like if you tell them it's going to rain in 7 days and it's > 95 outside. > > Thanks for listening. > > > > > Our websites: http://rheumatoid.arthritis.freehosting.net/ > http://www.rasupport.webprovider.com/ > Our chat room: www.delphi.com/RheumatoidArth1/start Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2000 Report Share Posted August 24, 2000 Hi . Welcome from another newbie. I'm also one of those people that has the side effects that .01% of the population will get. *G* When I worked at a clinic, the docs used to tease me and tell me that they were going to use me as a test subject. Anyway, welcome. Jenna FREE SPIRIT - Starlight Writers Publications THE GUARDIANS OF GLEDE - SWP Editors Choice Award; SWP Stellar Award; WordWeaving Award of Excellance THE GREEN PUMPKIN - CrossroadsPub.com; furt Award Nominee Homepage: www.geocities.com/jennakayfrancis ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2000 Report Share Posted August 28, 2000 Welcome , You'll find plenty of people here that understand weather predictions. I hope your doctor can get you on meds that will make you feel better. It is difficult for us to exercise when we are in so much pain. Yes, it is proven that it helps, but it is like pouring salt in a wound. I try to do range of motion exercised every day. Water exercises are the best for arthritics. If you have a local chapter of the Arthritis Association, they may have classes in your area. Let us know how your visit goes and what drugs you decide to try. a ----- Original Message ----- From: <CCouttsRMT@...> < egroups> Sent: Wednesday, August 23, 2000 4:58 PM Subject: Re: [ ] Introduction > Hi everybody. I would like to introduce myself. My name is and I was > diagnosed with RA about 4-1/2 years ago but obviously had it longer than > that. I'm 37 now. I'm finally seeing a rheumatologist for the first time next > week. I am one of those who just blew it off until I felt very lousy, which > I'm at that point now. The joint pains are horrible. I've been doing a lot of > research on the web re RA drugs and have settled on Celebrex or Enbrel. I'm a > medical transcriptionist by trade. I hate pills too as every single side > effect in the world, even down to something simple like amoxicillin, I > experience them. I'm very afraid of side effects as I've got to function. > I've got a business to run and 4 kids to raise. I started to get into the rut > of not wanting to exercise because I felt so lousy but once I did, I was much > better. I also dropped 35 pounds because that's the first thing that I will > be told to do and my joints don't need the extra weight. > > I guess I'm just coming here to meet other RA sufferers because nobody really > knows what it's like if you tell them it's going to rain in 7 days and it's > 95 outside. > > Thanks for listening. > > > > > Our websites: http://rheumatoid.arthritis.freehosting.net/ > http://www.rasupport.webprovider.com/ > Our chat room: www.delphi.com/RheumatoidArth1/start > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2000 Report Share Posted September 23, 2000 Welcome Sam: Keep us posted on your blood tests. Glad you have joined us. Jeannette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2000 Report Share Posted September 23, 2000 Welcome, Sam! Hope you can find the information, support, and laughs that you need here. I believe you can. This is an extraordinary group. Looking forward to hearing more from you soon. ----- Original Message ----- From: " sam owen " <sam.owen1@...> < egroups> Sent: Friday, September 22, 2000 7:43 PM Subject: [ ] Introduction > Hi all, > My name is Owen and i live in Norfolk/United Kingdom. I am 28 and > have been treated since January for RSI. They now think that i have RA and > have taken blood tests this week, it also runs in the family. > Sam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2000 Report Share Posted September 24, 2000 Welcome , You are so young to have RA. We all know that it knows no age limit. You will like our group. They make us laugh when we're down, understand our pain and support us no matter what. Welcome again. Regards, Sylvia > Hi all, > My name is Owen and i live in Norfolk/United Kingdom. I am 28 and > have been treated since January for RSI. They now think that i have RA and > have taken blood tests this week, it also runs in the family. > Sam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2001 Report Share Posted April 29, 2001 Hi ..........nice work with the horses good to have you in the group Med Venlig Hilsen Dennis Overskov D.O@... http://www.micropage.dk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2001 Report Share Posted April 29, 2001 and others Lamar here, Great pages. You are both a beautiful and talented person. I hope your CMT never progresses to the point you can not do the things you mention, but unfortunately it often does. My suggestions are a one story wheelchair assessable home. All doors 36 inches wide. All halls wide enough to negotiate a turn. No steps or a ramp. Large baths to accommodate a chair or lift. A huge shower is often better than a tub. If you are having the home built, have light switches lower than standard and electrical outlets higher so they are easy to reach from a chair. In the kitchen an oven with a side swing door rather than one that lets down and wall mounted at a level to reach from chair is ideal. Use care in kitchen design to provide for an easy flow. You do not want to move a chair a dozen times to get something from the refrigerator to the counter, sink, or stove. High cabinets are not good for people in a chair, nor are low cabinets filled with things unless they have slide out sections. Plenty of drawers are the best. See what you can reach from your chair and go from there. In baths and kitchens open counters like a table are ideal, you can roll up to them. It is very difficult to reach a kitchen sink or lavatory that is enclosed in a cabinet or vanity. Pedestal sinks in a bath are both attractive and practical. In my home I have large drawers in the bottom of closets, and lower than standard rods to hang clothing from. In the event that your hands are affected in the future, it is nice to have levers instead of knobs on faucets and doors. It is much cheaper to put them there initially than to replace down the line if essential. Always remember traffic flow patterns. Use your chair to get an idea. It is nice to have an entrance from where you park a car into or near the kitchen. When you bring in groceries or anything else you have a place to place them and work from there. Remember to allow area where you park for a vehicle with a lift if ever needed. An often overlooked area is the laundry. A dryer with a side swinging door is better than one where the door lets down. A washer with a front door is better than one that opens on top for someone in a chair. Have the laundry near the baths and bedrooms and not on the other end of the house. Have shelves and a place to hang hanging items at hand. (I have a rod suspended from the ceiling that I can reach) If a chair becomes essential you have to get dirty clothing from the bedroom and bath to the laundry area and clean items back. With a laundry stuck in a utility room far removed from these areas that can mean many trips in a wheelchair. You using a chair at times now gives you an advantage. Go through your daily routine ENTIRELY from it for a day and see what areas and tasks present problems. Then use your artistic talents to think of ways things could be changed to make the difficult task easier. Can you prepare a meal, use the bath, make the bed, do laundry, etc. from it? These are the areas that often present problems. You may never need all these things, and I sincerely hope you do not, but IF you do you will be glad you looked ahead. Even people without CMT usually encounter problems in a home as they age. The two level home that was ideal in the 30's becomes a curse at 75 for many. As for medical bills. If you do not have insurance--get it. If you can get group insurance even better. Since you are self employed you probably need to do some extensive retirement planning. What would happen if you could no longer sculpt? It is good that you have an able partner, but a person is not wise to think that partner will always be there. Hopefully they will. One final suggestion. If you do not have it, find things you enjoy that require less physical ability and dexterity. By all means do not give up the things you love while you can do them. I made the mistake of using physical activity as my main stress reliever, and it has been hard finding things that worked. I can look at my own life. At 34, I could do basically anything. I climbed the Washington Monument, I did cave diving, I climbed trees to install antennas 100 ft up. I dug a 225 ft ditch 6 feet deep with a pick and shovel. I cleared over an acre to add to my lawn from thick woods and had a small garden about half the size of a football field. I was married and had a full time job. I was continuing my education to advance myself. A hobby was doing lapidary and minute jewelry work and calligraphy. At 49, I was divorced, alone, had an AFO, needed a cane to walk. I had to retire from my job as an RN with psychiatric certification on 100% disability. I had frequent falls. Thankfully I had worked where I was able to draw a decent retirement after the 30 years I had been there. My progression was so extensive I qualified for Social Security Disability on the initial application. Now at 53, I can walk very short distances with a cane or walker. I can BARELY manage one step up without a cane and a rail. I can not even walk into the ditch I dug to pick up trash people throw from cars as they pass. I use a scooter for shopping and will be going into an electric wheelchair as soon as I am able to get one. I can not stand even momentarily without some support. I have difficulty writing and any fine work with my hands is impossible. Still alone, everything at home falls on me or what I can afford to hire done. Fatigue is a major problem. I am not wanting to sound pessimistic. Many with CMT never progress to the point I have. Some are faster and worse. Many could never do many of the things I experienced. Every individual with CMT is different. Some never experience more than minor problems. The ONLY reason I am able to survive outside an assistive living facility today is that I saw how my mother and grandmother progressed. I looked ahead at least some, knowing the potential. I made some preparations. I have good insurance as well as Medicare. (Since I was 40, I have had four major back surgeries, knee surgery, surgery for a torn biceps tendon and more medical bills.--in excess of 200,000 total.)y retirement and insurance have saved me so far. So to answer your question, YES it is more than wise to look ahead and be prepared as well as possible. If you never need it you have not wasted the effort. If you do,, the planning can help prevent financial and emotional disaster. It is my sincere hope that you and others will be amongst the ones that never experience marked progression. As I said, much of my advice is not limited to those with CMT. EVERY person that lives a " normal " lifespan, experiences some loss as they age and experience increased medical bills, frequently combined with a decreased income. It is NOT wise to constantly look at a dim future, but it is wise to be aware of the potential and prepare as well as possible. Good luck. ----- Original Message ----- From: Rose Sent: Sunday, April 29, 2001 11:02 AM Subject: [] Introduction Hello everyone, My name is and I'm 34, live in Northern Colorado, and am happily engaged to my sweetie Todd, who is not disabled. I have CMT, although I don't know which type it is. I was diagnosed when I was in my early teens. I had an ankle fusion (rt ankle) when I was 19 and could never get off the crutches after that. As of now I use one crutch, and sometimes a wheelchair (power shopping at the mall, giant expo halls, etc) Oddly enough, I make my living 100% as an equine (horse) sculptor, and my fiance is also involved full time, doing the casting and shipping of the sculptures. I do have problems with my hands which at times cause me great concern, but for now I am still able to sculpt as I always have. I am sure that will change, probably sooner than I would like (isn't that always the case?) I enjoy gardening, horseback riding, skiing, and bike riding. The last two I am able to do with the help of adaptive eqipment. I also spend way too much time at the computer We are hoping to be able to buy a few acres next year and have a few horses. I am wondering if any of you have financial advice for someone like me, who is getting married and also getting ready to sell her first house and buy a larger place, with my disability in mind. I am concerned about not being able to work someday, and having my medical bills drag us both down. Is this something to really worry about? Thanks everyone, Rose www.rosehorse.com @... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2001 Report Share Posted April 29, 2001 -----Original Message----- From: Rose <rosehorse@...> < > Date: Sunday, April 29, 2001 9:57 AM Subject: [] Introduction >>>>>>>Hello , welcome to our list. Lots of great informative people on here, we share information and ideas. You are a very energetic lady! Good for you! You may never progress beyond the point your at now, we are all so different. Take it one day at a time, Lamar gave some very good suggestions. There are some of us on list here that have problems with hands so we can sympathize with your concerns and hand problems, once again welcome, ~>Becky M. Hello everyone, My name is and I'm 34, live in Northern Colorado, and am happily engaged to my sweetie Todd, who is not disabled. I have CMT, although I don't know which type it is. I was diagnosed when I was in my early teens. I had an ankle fusion (rt ankle) when I was 19 and could never get off the crutches after that. As of now I use one crutch, and sometimes a wheelchair (power shopping at the mall, giant expo halls, etc) Oddly enough, I make my living 100% as an equine (horse) sculptor, and my fiance is also involved full time, doing the casting and shipping of the sculptures. I do have problems with my hands which at times cause me great concern, but for now I am still able to sculpt as I always have. I am sure that will change, probably sooner than I would like (isn't that always the case?) I enjoy gardening, horseback riding, skiing, and bike riding. The last two I am able to do with the help of adaptive eqipment. I also spend way too much time at the computer We are hoping to be able to buy a few acres next year and have a few horses. I am wondering if any of you have financial advice for someone like me, who is getting married and also getting ready to sell her first house and buy a larger place, with my disability in mind. I am concerned about not being able to work someday, and having my medical bills drag us both down. Is this something to really worry about? Thanks everyone, Rose www.rosehorse.com @... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2001 Report Share Posted April 29, 2001 In a message dated 4/29/01 5:11:44 PM Eastern Daylight Time, rmax@... writes: << I had an ankle fusion (rt ankle) when I was 19 and could never get off the crutches after that. >> Was the problem the ankle, foot, or a multiple of things. E Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2001 Report Share Posted April 29, 2001 Hello Rose, Owen here, A very warm welcome to the group. I'm 58 and just had some hand surgery ( Four weeks ago.) I was a dental technician and most of the work I did was sculpting of individual teeth i.e.. crowns and bridges. I had enjoyed the work I had done. I had to retire on disability about 6 years ago. Something that I am still ask my self is; " Should I have checked with a Hand Specialist earlier? " May they could have prescribed an alternative treatment to the surgery I had to have now. Welcome Again! Happy Trails Owen Rose wrote: > Hello everyone, > > My name is and I'm 34, live in Northern Colorado, and am > happily engaged to my sweetie Todd, who is not disabled. I have CMT, > although I don't know which type it is. I was diagnosed when I was in > my early teens. I had an ankle fusion (rt ankle) when I was 19 and > could never get off the crutches after that. As of now I use one > crutch, and sometimes a wheelchair (power shopping at the mall, giant > expo halls, etc) > > Oddly enough, I make my living 100% as an equine (horse) sculptor, > and my fiance is also involved full time, doing the casting and > shipping of the sculptures. I do have problems with my hands which at > times cause me great concern, but for now I am still able to sculpt > as I always have. I am sure that will change, probably sooner than I > would like (isn't that always the case?) > > I enjoy gardening, horseback riding, skiing, and bike riding. The > last two I am able to do with the help of adaptive eqipment. I also > spend > way too much time at the computer > > We are hoping to be able to buy a few acres next year and have a few > horses. I am wondering if any of you have financial advice for > someone like me, who is getting married and also getting ready to > sell her first house and buy a larger place, with my disability in > mind. I am concerned about not being able to work someday, and having > my medical bills drag us both down. Is this something to really worry > about? > > > Thanks everyone, > > Rose > www.rosehorse.com > @... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2001 Report Share Posted April 30, 2001 Welcome , It is nice to have you join the group. Hopefully you will find information to questions you might have; just check the archives section and you can even read prior postings. With this group....it's informative, helpful and we always like everyone's input. Feel free to ask questions etc. Again, welcome! ----- Original Message ----- From: Rose <rosehorse@...> < > Sent: Sunday, April 29, 2001 10:02 AM Subject: [] Introduction > Hello everyone, > > My name is and I'm 34, live in Northern Colorado, and am > happily engaged to my sweetie Todd, who is not disabled. I have CMT, > although I don't know which type it is. I was diagnosed when I was in > my early teens. I had an ankle fusion (rt ankle) when I was 19 and > could never get off the crutches after that. As of now I use one > crutch, and sometimes a wheelchair (power shopping at the mall, giant > expo halls, etc) > > Oddly enough, I make my living 100% as an equine (horse) sculptor, > and my fiance is also involved full time, doing the casting and > shipping of the sculptures. I do have problems with my hands which at > times cause me great concern, but for now I am still able to sculpt > as I always have. I am sure that will change, probably sooner than I > would like (isn't that always the case?) > > I enjoy gardening, horseback riding, skiing, and bike riding. The > last two I am able to do with the help of adaptive eqipment. I also > spend > way too much time at the computer > > We are hoping to be able to buy a few acres next year and have a few > horses. I am wondering if any of you have financial advice for > someone like me, who is getting married and also getting ready to > sell her first house and buy a larger place, with my disability in > mind. I am concerned about not being able to work someday, and having > my medical bills drag us both down. Is this something to really worry > about? > > > Thanks everyone, > > Rose > www.rosehorse.com > @... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2001 Report Share Posted April 30, 2001 Hi all, I have been reading posts for quite some time now and find it very informative and helpful, so I was hoping maybe someone could shed some light on a problem I have been having. I am 27 and was diagnosed when I was six. I have had extensive surgery and spent some time in a chair, although I am mobile now. As of the last 6 months or so, I have been experiencing a problem with my upper thighs. I find if I have been standing for any length of time, that either one of my upper thighs goes completely numb and devoid of sensation. A couple of times, both have gone at once, causing me to collapse. I mentioned this to my GP, but he had no explanations and I am unable to see my orthopedics man until next month. I am concerned as I find it is happening with increased frequency and the periods of numbness are getting longer. has anyone else experienced anything similar or can offer any ideas? Much appreciated, Kathy ----- Original Message ----- From: " " <lisarich.com@...> < > Sent: Monday, April 30, 2001 11:40 AM Subject: Re: [] Introduction > Welcome , > > It is nice to have you join the group. Hopefully you will find information > to questions you might have; just check the archives section and you can > even read prior postings. With this group....it's informative, helpful and > we always like everyone's input. Feel free to ask questions etc. Again, > welcome! > > > > ----- Original Message ----- > From: Rose <rosehorse@...> > < > > Sent: Sunday, April 29, 2001 10:02 AM > Subject: [] Introduction > > > > Hello everyone, > > > > My name is and I'm 34, live in Northern Colorado, and am > > happily engaged to my sweetie Todd, who is not disabled. I have CMT, > > although I don't know which type it is. I was diagnosed when I was in > > my early teens. I had an ankle fusion (rt ankle) when I was 19 and > > could never get off the crutches after that. As of now I use one > > crutch, and sometimes a wheelchair (power shopping at the mall, giant > > expo halls, etc) > > > > Oddly enough, I make my living 100% as an equine (horse) sculptor, > > and my fiance is also involved full time, doing the casting and > > shipping of the sculptures. I do have problems with my hands which at > > times cause me great concern, but for now I am still able to sculpt > > as I always have. I am sure that will change, probably sooner than I > > would like (isn't that always the case?) > > > > I enjoy gardening, horseback riding, skiing, and bike riding. The > > last two I am able to do with the help of adaptive eqipment. I also > > spend > > way too much time at the computer > > > > We are hoping to be able to buy a few acres next year and have a few > > horses. I am wondering if any of you have financial advice for > > someone like me, who is getting married and also getting ready to > > sell her first house and buy a larger place, with my disability in > > mind. I am concerned about not being able to work someday, and having > > my medical bills drag us both down. Is this something to really worry > > about? > > > > > > Thanks everyone, > > > > Rose > > www.rosehorse.com > > @... > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2001 Report Share Posted April 30, 2001 Hi kathy, I had this problem two or three times in the last few years. In my case, a whole half of my body was going numb, I couldn't even raise my arm above my shoulder. It scared the **** out of me. It lasted for a few hours. The cause was simple: I pushed myself too hard the days before, very long walks, not enough sleep, etc... Try to find if you have been to active the days before, when it happens. Maxime >From: " Kathy Nolan " <q9721111@...> >Reply- >< > >Subject: Re: [] Introduction >Date: Mon, 30 Apr 2001 12:51:59 +1000 > >Hi all, >I have been reading posts for quite some time now and find it very >informative and helpful, so I was hoping maybe someone could shed some >light >on a problem I have been having. >I am 27 and was diagnosed when I was six. I have had extensive surgery and >spent some time in a chair, although I am mobile now. As of the last 6 >months or so, I have been experiencing a problem with my upper thighs. I >find if I have been standing for any length of time, that either one of my >upper thighs goes completely numb and devoid of sensation. A couple of >times, both have gone at once, causing me to collapse. I mentioned this to >my GP, but he had no explanations and I am unable to see my orthopedics man >until next month. I am concerned as I find it is happening with increased >frequency and the periods of numbness are getting longer. >has anyone else experienced anything similar or can offer any ideas? >Much appreciated, >Kathy >----- Original Message ----- >From: " " <lisarich.com@...> >< > >Sent: Monday, April 30, 2001 11:40 AM >Subject: Re: [] Introduction > > > > Welcome , > > > > It is nice to have you join the group. Hopefully you will find >information > > to questions you might have; just check the archives section and you can > > even read prior postings. With this group....it's informative, helpful >and > > we always like everyone's input. Feel free to ask questions etc. >Again, > > welcome! > > > > > > > > ----- Original Message ----- > > From: Rose <rosehorse@...> > > < > > > Sent: Sunday, April 29, 2001 10:02 AM > > Subject: [] Introduction > > > > > > > Hello everyone, > > > > > > My name is and I'm 34, live in Northern Colorado, and am > > > happily engaged to my sweetie Todd, who is not disabled. I have CMT, > > > although I don't know which type it is. I was diagnosed when I was in > > > my early teens. I had an ankle fusion (rt ankle) when I was 19 and > > > could never get off the crutches after that. As of now I use one > > > crutch, and sometimes a wheelchair (power shopping at the mall, giant > > > expo halls, etc) > > > > > > Oddly enough, I make my living 100% as an equine (horse) sculptor, > > > and my fiance is also involved full time, doing the casting and > > > shipping of the sculptures. I do have problems with my hands which at > > > times cause me great concern, but for now I am still able to sculpt > > > as I always have. I am sure that will change, probably sooner than I > > > would like (isn't that always the case?) > > > > > > I enjoy gardening, horseback riding, skiing, and bike riding. The > > > last two I am able to do with the help of adaptive eqipment. I also > > > spend > > > way too much time at the computer > > > > > > We are hoping to be able to buy a few acres next year and have a few > > > horses. I am wondering if any of you have financial advice for > > > someone like me, who is getting married and also getting ready to > > > sell her first house and buy a larger place, with my disability in > > > mind. I am concerned about not being able to work someday, and having > > > my medical bills drag us both down. Is this something to really worry > > > about? > > > > > > > > > Thanks everyone, > > > > > > Rose > > > www.rosehorse.com > > > @... > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2001 Report Share Posted April 30, 2001 Hi Kathy, Owen here, Occasionally I have the same problem with my legs / thighs. I think that in my case I have determined it happens when I have been sitting with my legs dangling off of where ever I happen to be sitting. Sometimes I forget to adjust a desk chair that is to high and it presses on the back of my thighs causing numbness. There are times when I get up from our sofa after sitting there too long ( to long for me is one hour.) then my legs even my but gets numb. I my opinion in my case I think it maybe because of the loss of muscle mass which protects the nerves from being compressed and causing numbness. My solution has been to not sit in one place to long and to make sure the chair is the right height. I hope my experiences have been of some help. Happy Trails Owen Kathy Nolan wrote: > Hi all, > I have been reading posts for quite some time now and find it very > informative and helpful, so I was hoping maybe someone could shed some > light > on a problem I have been having. > I am 27 and was diagnosed when I was six. I have had extensive > surgery and > spent some time in a chair, although I am mobile now. As of the last 6 > > months or so, I have been experiencing a problem with my upper thighs. > I > find if I have been standing for any length of time, that either one > of my > upper thighs goes completely numb and devoid of sensation. A couple of > > times, both have gone at once, causing me to collapse. I mentioned > this to > my GP, but he had no explanations and I am unable to see my > orthopedics man > until next month. I am concerned as I find it is happening with > increased > frequency and the periods of numbness are getting longer. > has anyone else experienced anything similar or can offer any ideas? > Much appreciated, > Kathy > ----- Original Message ----- > From: " " <lisarich.com@...> > < > > Sent: Monday, April 30, 2001 11:40 AM > Subject: Re: [] Introduction > > > > Welcome , > > > > It is nice to have you join the group. Hopefully you will find > information > > to questions you might have; just check the archives section and you > can > > even read prior postings. With this group....it's informative, > helpful > and > > we always like everyone's input. Feel free to ask questions etc. > Again, > > welcome! > > > > > > > > ----- Original Message ----- > > From: Rose <rosehorse@...> > > < > > > Sent: Sunday, April 29, 2001 10:02 AM > > Subject: [] Introduction > > > > > > > Hello everyone, > > > > > > My name is and I'm 34, live in Northern Colorado, and am > > > happily engaged to my sweetie Todd, who is not disabled. I have > CMT, > > > although I don't know which type it is. I was diagnosed when I was > in > > > my early teens. I had an ankle fusion (rt ankle) when I was 19 and > > > > could never get off the crutches after that. As of now I use one > > > crutch, and sometimes a wheelchair (power shopping at the mall, > giant > > > expo halls, etc) > > > > > > Oddly enough, I make my living 100% as an equine (horse) sculptor, > > > > and my fiance is also involved full time, doing the casting and > > > shipping of the sculptures. I do have problems with my hands which > at > > > times cause me great concern, but for now I am still able to > sculpt > > > as I always have. I am sure that will change, probably sooner than > I > > > would like (isn't that always the case?) > > > > > > I enjoy gardening, horseback riding, skiing, and bike riding. The > > > last two I am able to do with the help of adaptive eqipment. I > also > > > spend > > > way too much time at the computer > > > > > > We are hoping to be able to buy a few acres next year and have a > few > > > horses. I am wondering if any of you have financial advice for > > > someone like me, who is getting married and also getting ready to > > > sell her first house and buy a larger place, with my disability in > > > > mind. I am concerned about not being able to work someday, and > having > > > my medical bills drag us both down. Is this something to really > worry > > > about? > > > > > > > > > Thanks everyone, > > > > > > Rose > > > www.rosehorse.com > > > @... > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 Welcome Jolene, Hi, I am and I am happy to see that you have learned from the group. It is the best thing I have found so far. The doctors cannot touch enough of us to gather the data needed. Maybe they should join our site and learn as we do. Maybe I will see about saving all the intros, without address, of course and give them to the chicken doctors here on the shore. God Bless You and again welcome, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 Hello blackiebowman ----- Original Message ----- From: blackiebowman@... Sent: Wednesday, January 09, 2002 8:13 PM Subject: [] Introduction Hi everyone! I am a female who was born with CMT 59 years ago. Little was known then about CMT. In fact, every doctor I was seen by told my parents that I was just clumbsy trying to walk at age 8 months. This diagnosis continued for thirteen years. Then, a doctor visiting from England saw me and knew right away what was wrong. I have been fortunate since being operated on in that my type 1 hasn't progressed at a rapid speed. I have three healthy grown children and two healthy granddaughters. Reading all the e-mails about pain I am grateful to say that I don't experience this . for CMT AWARENESS; Wear Your Violet Ribbons, more awareness of CMT equals more research funds and more knowlege of Charcot Marie Tooth Disease! is the SOLE authentic ribbon distributor! Get your's today! Email the moderator with your request! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 Hi All! Yes, it sure is great to find others who have the same condition (if that's the right word) to talk with. I'm new to talking on the internet so I hope you will bear with me and I look forward to receiving e-mail. Hope all have a great day. I'm going to try to go out to the mall today providing I can get me and my scooter off the curb. For some reason the transportation department finds that curb cuts were designed for holding mounds of snow that the plows push off the road. Well, hope I haven't bored anyone. Looking forward to talking with everyone later. Blackiebowman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 Welcome to both Rocky and Blackiebowman I am fairly new to the group also and have found warmth, compassion, understanding, information and believe it or not people who are just like me. I was once told that I was like a pet Coon, what I didn't trip over, tear up, or break, I pooped on (LOL, that was a joke ma'm just a joke.) So it looks like there are a lot of us cute little rascals in this group and everyone of them are dear to me. Susie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 Hello Susie Thanks for the welcome! Rocky ----- Original Message ----- From: Susie Lemin Sent: Thursday, January 10, 2002 7:28 AM Subject: Re: [] Introduction Welcome to both Rocky and Blackiebowman I am fairly new to the group also and have found warmth, compassion, understanding, information and believe it or not people who are just like me. I was once told that I was like a pet Coon, what I didn't trip over, tear up, or break, I pooped on (LOL, that was a joke ma'm just a joke.) So it looks like there are a lot of us cute little rascals in this group and everyone of them are dear to me. Susie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 Have a great time at mall! Rocky ----- Original Message ----- From: blackiebowman@... Sent: Thursday, January 10, 2002 9:17 AM Subject: Re: [] Introduction Hi All! Yes, it sure is great to find others who have the same condition (if that's the right word) to talk with. I'm new to talking on the internet so I hope you will bear with me and I look forward to receiving e-mail. Hope all have a great day. I'm going to try to go out to the mall today providing I can get me and my scooter off the curb. For some reason the transportation department finds that curb cuts were designed for holding mounds of snow that the plows push off the road. Well, hope I haven't bored anyone. Looking forward to talking with everyone later. Blackiebowman for CMT AWARENESS; Wear Your Violet Ribbons, more awareness of CMT equals more research funds and more knowlege of Charcot Marie Tooth Disease! is the SOLE authentic ribbon distributor! Get your's today! Email the moderator with your request! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 might as well of sent this one by US mail!!! ----- Original Message ----- From: Rocky Sent: Friday, January 11, 2002 1:26 PM Subject: Re: [] Introduction Have a great time at mall! Rocky ----- Original Message ----- From: blackiebowman@... Sent: Thursday, January 10, 2002 9:17 AM Subject: Re: [] Introduction Hi All! Yes, it sure is great to find others who have the same condition (if that's the right word) to talk with. I'm new to talking on the internet so I hope you will bear with me and I look forward to receiving e-mail. Hope all have a great day. I'm going to try to go out to the mall today providing I can get me and my scooter off the curb. For some reason the transportation department finds that curb cuts were designed for holding mounds of snow that the plows push off the road. Well, hope I haven't bored anyone. Looking forward to talking with everyone later. Blackiebowman for CMT AWARENESS; Wear Your Violet Ribbons, more awareness of CMT equals more research funds and more knowlege of Charcot Marie Tooth Disease! is the SOLE authentic ribbon distributor! Get your's today! Email the moderator with your request! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2002 Report Share Posted April 28, 2002 Hello Stoners, I have been reading this list with interest for some months now. Because of time restraints, I have not introduced myself nor have I written my point by point experiences with the flushes that I have been doing since early January, but I can say that every single flush I have done so far has been a completely different experience. I am open to anyone who may wish to respond to this lengthy introduction. A synopsis of my experiences... Me: vegetarian, good diet, active (in my profession and I even did a marathon when I was going through some of the worst of the pain episodes :~) ), mid 30's, female, no children, no family with similar symptoms...only thing I can think of that my lead to this tendency is that I was born " jaundiced. " Symptoms Prior to Flushes: (Please note some of these symptoms came on gradually over years and others were induced by what my doctor had prescribed to " help " me - I was the pain and the NON help of my doctors sent me in search of finding alternative routes to stop the pain - only to find out the flushing is also clearing up, or at least greatly reducing, ALL of these other symptoms).... chronic colic like pain originating in the GB area and radiating around the liver area - both anteriorly, laterally and posteriorly - which lasted for over a year and gradually kept getting worse (did not have any pattern to it - sometimes it was constant - sometimes it would subside - it did not seem to " flare up " or calm down by anything I ate, did, how I slept, or what I did to try and relieve the pain), difficulty taking in deep breaths, difficultly bending over at waist, difficulty palpating under the ribs when trying to sooth the pain, chronic hiccups, skin inflammation and breakouts, very evident signs of accelerated skin aging last year before the flush, daily hot flashes/heat intolerant (love a good steam though), low body temperature, low blood pressure, fast resting heart rate - easy to get going too fast when exercising, borderline low iron levels, dry flaky skin on feet, face, and scalp (scalp was a recent development), psoriasis patch on the back of the neck and scalp about the size of my fist, significant increase of " gray " hair (I have always had a few " gray " hairs - even as a child), fatigue, swelling in joints, swelling in legs, pain and discoloration in ankles and feet (mottled red, yellow, white, blue, and purple colors - yes, I know, sounds pretty ugly...and it was!), bloating and gas in the abdomen, occasionally bowel disturbances but not that noticeable...at the time- that is - now I know better - I was having more problems with that than I’d wanted to admit ;~), insomnia, restless and light sleeper, weight gain (even though I was training for a marathon and watching my diet closely! Yeah, my trainers were baffled by it too.), significant swelling in some of the glands of my neck, increased sinus problems that are not related to my displaced septum, chronic upper back and neck stiffness and pain - mostly right side. Attempts with " healing " using " modern medicine " : Went to the doctor specifically to consult for pain in my side and the swollen gland in my neck. The1st visit with doctor resulted in doing a blood test. Prescribed iron for " borderline " iron levels. I refused to take the ferrous sulfate. Tried a more natural source for iron in same dosages that were prescribed. BIG MISTAKE! A number of the symptoms that are mentioned above resulted from this experience, or were GREATLY exacerbated...including the pain in my side, some of the resulting symptoms (hair falling out, reddish stretch marks suddenly appearing on lower abdomen, muscle cramps, skin turning " copper " colored, depression and significant mood changes)...did subside within a few months after stopping the iron. I stopped the prescription 3/4 of the way through what the doctor had prescribed. Tested again for Iron. Normal (HA!...if you call being near death’s door being normal...I had all the symptoms of significant iron poisoning). Started cleansing at the point which lasted for several months - first a bowel cleanse, then the parasite cleanse, and then the kidney cleanse. None of these really made much difference for me. Since my blood test had showed normal lipid and cholesterol levels, doctor began to think it may be a UT infection. The doctor then ordered a UA. Test came back with borderline elevated leukocytes. Tested again - clear. Tested again - borderline. Doctor prescribed Cipro - " just to be sure. " Tried alternative method of manose first. Test then came back normal. Pain in GB area still there though. Over a 8 month period tested nearly monthly, with random results on UA, sometime borderline, most of the time clear. Finally, in frustration I gave into taking the Cipro. Inflamation response did go down, along with some...but not all...of the pain. Next UA was clear. ...but the pain was still there. Saw a different doctor, who puzzled as to why I had had so many UA’s, and been prescribed Cipro, for having such a low number of elevated leukocytes from the tests...decided it might be the gallbladder after all and ordered an ultrasound. Test showed clear on all organs that were checked (spleen, liver, gallbladder, pancreas, and kidneys), lipid and cholesterol levels normal. At this point I found Dr. Chang’s site and gave up on the my doctor’s. Haven’t been back since. Started Dr Chang’s regimen. The Chinese Bitters gave me a great deal of discomfort, even in lower dosages. Switched to CGG, Coptis, & Curcuma, did 4 weeks and then began my flushes. Added the bitters back in after the 2nd flush with no more problems. Every flush has had different results without much change in the way I have done them. The only difference is that I added the Epsom salts to the 3rd flush and kept with that from that point on). I have only had the waxy and soft " cholesterol " stones pass with the 6 flushes I have done so far (with a couple of them being nearly 2 inches long and 3/4 inches in diameter). Of all the 6 flushes - for 4 of them, in order to even get any results, I had to flush two nights in row ( more accurately on the 2nd flush, I started getting results when I was on my 3rd glass of the " mixture " on the second night...I passed the most " stones " along other stuff with that flush. The 3rd time I got result the first try. The last flush, I got results the first time but it was as I downing the first glass of the seconds night’s oil, so I went ahead and did the second night anyway... which did not produce anything but obvious olive oil and grapefruit juice). Other then the 3rd flush, the " stones " have all been varying shades of green. The first 2 flushes produced the dark emerald green ones. The later flushes produced the lighter green and sometimes pure white ones. The white ones are the softest and most crumbly of them all. The 3rd flush, produced mostly tan, orangish, waxy and more rubbery " stones " (this is the one that I did only one night of the " mixture. " ) I have also noticed with the last 2 flushes that after I pass the stones, a little later I will pass what looks like a glob of pure cholesterol. It is white in color, is not in the shape of a stone and would amount to about 2 to 3 tablespoons full (the texture is the same as the whit looking stones...it just doesn’t have any real shape to it.. I am wondering if this is some of the ‘fat " I having been losing with my weight loss. I have lost about 15 to 20 pounds and a lot of inches (not to mention all the other health improvements that keep on coming)...the last 3 flushes only produced around 100 to 150 " stones " combined. The largest " stones " that I have passed since I started were passed were during the 4th, 3rd, and 5th flush (descending order of size). Overall, I would say I had passed only about 700 to 800 " stones " altogether - which is nothing like the numbers I have been hearing from others. The biggest joy to me is I now have only a very specifically located occasional " twinge " of pain (toward the lateral side of my ribs around the liver area) which leads me to believe there is still a larger " stone " lodged there that is trying to move its way down to the gall bladder...but hasn’t yet. (BTW, I did feel the largest stones move laterally to my gallbladder before they flushed out...and they were in some the areas that used to be part of my chronic pain). Well, I think I have written enough about my flushes for now. Now to.... ......Gallstones that cause colic pain and that have hardened within the gallbladder is in my opinion the only form of bile that should be termed as 'gallstones'. The soft balls of whatever bile content, cholesterol, or even oil for that matter, does not usually require an accelerated means of exiting as with the process of a flush. It will not usually cause a problem and will generally exit within the normal function of digestive action........ My questions now are.... Given my experience ...if what I have passed is not " gallstones " what should they be called? I have heard the term " liver stones " used on occasion. Is that a more accurate term to use? Maybe " bile " stone? I am just trying to figure out what to call these things. If not " stones " ...then what? For so few stones to have passed in these flushes, and all of them being the ‘soft’ kind, why was I experiencing such significant chronic pain which started around my GB?...and if these " stones " match the description of what Barry says should pass and dissolve normally, then what would cause the breakdown of this natural process in someone who eats VERY little cholesterol in the first place? (I have been a vegetarian all my life and have consumed very little dairy and eggs over the years. Since I started this flushing, I have been switching to a nearly vegan 70% to 80% raw diet and been reducing my omega 6 and increasing my omega 3 intake) Has anyone else had to flush for 2 nights in order to get results? Does anyone have an idea as to why I needed to do this " extra purge " to get the stones to pass? Has anyone literally felt the " stones " moved transversely across the liver to the gallbladder like I have? I have been learning a lot from this list and look forward to further discussion and stories. Christa --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2002 Report Share Posted April 28, 2002 In a message dated 4/28/02 10:04:13 AM Eastern Daylight Time, suzanne_on_ca@... writes: > . I am not sure of an answer, > but my theory is that a weakened liver can create havoc with the > gallbladder. (Check out Dr Cabot's site for a bit of a liver guide.) > From what I've read, a weakened liver can create havoc for just about any part of the body, so it does seem likely that there would be a connection with the gallbladder as well. rachel~ Quote Link to comment Share on other sites More sharing options...
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