can't get me down!

[Guest guest]

Hi June:

Now that I am no longer in denial I think that this may have started about 4

years ago. Funny how we compensate. It started with knees hurting, then I

bought one of those bracelets (ying & yang) which seemed to help the pain to

subside.... then I noticed feet were a slight problem, first one foot

swelling then the other. Right foot would swell by day then at night it

would subside. Pretty soon I could not keep shoes on that foot. Still in

denial. It will get better I would say. I was notorious for walking around

in stocking feet and socks. I could get shoes on for an hour or two, that

was it. With no medical insurance you treat these things differently. Well

then the cane... then to the doctor. After x-rays they talked about

osteomyalitus. Holy moley....that's when they megadose you on antibiotics

for 6 months ( and the side effects are unbelievable, your kidneys can shut

down, etc.) Luckily that was ruled out just before they were about to send

me to a rehab.

The wheel chair is good from the point that my foot is getting a chance to

hopefully heel. By that I mean that you can hear the clicking when I

depress (or is that compress the bones) and that swelling has reduced, but

will it ever be better, I doubt it. My opinion of the doctors.....they know

less than this group about our disease. I would compare our problems to

those shunned with leprosy. Until some serious answers are found I am

comfortable with vitamin C, this support group, hypnosis (as I believe in my

heeling abilities and the strength of my mind) and the fact that I am able

to still function due to sheer will and the fact you cannot get me down.

Please everyone, keep writing, it's good for all of us to hear what you have

learned and your experiences and conclusions....and thanks for reading this.

[Guest guest]

Hi , this is also (spoolie)

You're right about the dr's..I know they've got alot to deal with, but

I've learned more about cmt with you wonderful people than with any other

dr. I don't know why my hand got better(I can sign a check now, although

there's no money to speak of) but I thank god for all your great input and I

definetly believe in mind over matter..My sister is getting her blood test

results back Wednesday, and I'm so curious to what comes of it. For some

reason she's in denial and won't admit she has problems, although everyone

deals with things differently, I just want her to know we can get better..

Also talked to my uncle today (he lives in N.J.) who's my mom's brother and

it definitely looks like it's from my dad's side of the family..No problems

from my cousins..

If anyone would like to talk one on one with my, I'd love the company,,I

live by myself, am 44 with a cat (Mr. Magic) and would like someone to excuse

my language ..shoot the shit with once in awhile!! That's what keeps me

going.. I don't like trying to explain this to people who don't understand,

I'm not a whiner..just somes laughs and it's best to laugh at our ownselves

sometimes..and yes I'm tired of tripping over the wires on the floor!! And

I do know they are there! The best news is, now I know why I have been for

years....

and if anyone would like to come visit in the Florida Keys You're more

than welcome!! Laughter is a great friend and works for me..

Someone told me the best saying the other day and I put it one the

frig...ready??

YOU DON'T HAVE TO LIVE, BUT YOU DO HAVE TO DIE..

Took me a little to get the full drift, but life is being happy and peppy

to me..and I know some miserable people who are perfectly healthy, but are

mean and have no love to give..So if nothing else, I love life and people

and will do whatever it takes to help others no matter what little it may

be.

O.K., I'll stop now...I'm making myself sick..sorry..This is the best

group of people I've ever been in touch with and pleasant dreams to

everyone!!!