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12-21-2012, 08:29 PM | #21 | ||
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Its depressing to realize this is never going to go away.
I have been in denial I guess, since this is all fairly new to me. When I really think about the fact that I am going to have to deal with this everyday for the rest of my life...it gets so depressing. I keep dreaming I will find the right supplement and it will be healed and life will resume. Instead I find myself thinking of my feet everyday of my life. It's not even been a year. I can't imagine this for...ever. |
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12-22-2012, 07:31 AM | #22 | |||
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Wisest Elder Ever
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I agree, that chronic issues are draining. Perhaps you'll find
your specific solution, soon, and you won't have these flares so often. I still get flares but they don't last long and are not really terrible. I do understand, because I have a GI birth defect that is with me for life. Everyday I deal with it... watch foods, etc. My life revolves around it. (twisted intestines and stomach). Things that give others a little gas, give me torsions which are very painful. So I have to watch everything I eat. I think this experience lead to my PN activities here. I am used to fielding remedies and interventions for my innards! You do get used to it. I can wear conventional shoes if they are cushioned, but I wear slides at home. Covered slippers get my feet too hot, though. Only when really really cold will I wear fuzzy slippers. I don't wear socks often. My feet don't sweat much anymore, so when my gel inserts need it I alcohol them, or finally replace them. You'll find an answer eventually. But I do think that PN is for life. You may be able to manage it, like I do, so you don't progress. Everyone gets something wrong healthwise, eventually. I'd rather have this than something much worse like MS or cancer or epilepsy, etc.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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12-22-2012, 10:41 AM | #23 | |||
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Junior Member
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Stacy-
I too take my shoes off at the mall sometimes and cool my feet off on the cold floors-especially in the winter time. And I could care less if people look at me and think I'm some weirdo! |
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12-22-2012, 10:45 AM | #24 | ||
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Grand Magnate
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note: CMT is not a fun thing to deal with at all. It is progressive as said many times. More and more symptoms that get to be pretty hard to live with such as pain, hot/cold feet, hands that don't work very well, breathing problems, etc. awful balance that is if you can even stand without holding on to something, awful fatigue at times (seems to be a lot of it) just to name a few things. But we do live with it and some of us are better at the moment than others depending on the type of CMT. And some are in wheelchairs, have AFO's, use rollators/walkers, canes, an arm, etc. And some just sit as they can't do anything else. There are no fancy shoes anymore. It's AFO's and shoes to go with them. No walking on hard floors bare foot or even with socks on. No more walking bare foot on the lawn or on a gravel road as one used to do with no problem.
I surely would not want cancer and I've seen plenty of that right where I live. It's just not a pretty picture anymore. At the present time there is no cure/treatment for any type of CMT. I also know at least four people here who have MS. Their symptoms are all different. A couple of those people you would hardly know have MS. Then there is the one who is getting worse all of the time. Brain fog is evident there at times. But walking around without the aid of anything. And then the one who is in a nursing home and in a wheelchair. Not good at all. We all deal with what we have one way or the other.
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Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." Last edited by Kitt; 12-22-2012 at 10:51 AM. Reason: Added |
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12-22-2012, 10:49 AM | #25 | ||
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Senior Member
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Yes MrsD there is always a silver lining, and most days I find it. It's just lately....realizing ...and accepting..that this is a life long affliction. I never accepted that before. It's like a truck hit me yesterday..that this. is. not. going. away.
I dream about getting in bed and just going to sleep, with my feet under the covers. That dream ended yesterday. I completely realize there are way worse things I could have to complain about, and this too shall pass. I will learn to live with it. But I guess yesterday was my first day of learning and accepting that, well, that I have to. That I will have to learn to live with it forever. It was quite a moment. I am no longer looking for a cure, hoping and praying it doesnt get worse and learning to accept it is here to stay.A depressing moment. I don't even know what happened to bring that moment on...I was reading here on this forum and it just hit me. |
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12-22-2012, 10:52 AM | #26 | ||
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Grand Magnate
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There is no cure/treatment for any type of CMT at the present time. It's just not a pretty picture.
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Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." |
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12-22-2012, 10:59 AM | #27 | ||
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Senior Member
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duh, I figured it out lol
Last edited by Stacy2012; 12-22-2012 at 12:43 PM. |
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12-22-2012, 11:15 AM | #28 | ||
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Junior Member
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I do notice that Carbs seem to bother my feet. If I keep it 20g or below per meal I am ok.. but any more and my feet are burning. And at night they burn no matter what. I am thankful I have some control and I am looking forward to summer!
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"Thanks for this!" says: | Stacy2012 (12-22-2012) |
12-22-2012, 12:25 PM | #29 | |||
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Senior Member
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Stacy many here know exactly what you are feeling. I do. It is depressing. While many have it worse than us, we still have to live with what we have and feelings of why me are natural. You will get used to it to a certain degree but we all have our low moments still.
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"Thanks for this!" says: | glenntaj (12-23-2012), Kitt (12-22-2012), malawigirl08 (12-24-2012), Stacy2012 (12-22-2012), Susanne C. (12-22-2012) |
12-22-2012, 12:42 PM | #30 | ||
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Senior Member
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Dawn I agree, carbs make mine worse too. I do not over indulge very often because I watch my blood sugar levels but on thanksgiving and occasionally I have a cheat day and it does seem to be worse. I try to keep mine under 30.
Echoes, you are so right. What we have is not the worse thing in life but it is still our problem to deal with. Yesterday was just one of those "ah ha" moments and it really did help even though it also hurt. I now accept that I am looking for ways to deal with this instead of cure it. A double edged sword but needed in order to grow. As with all things in life, it sure hurt and will take awhile to really sink in and then accept. |
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