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Old 04-26-2008, 02:14 PM   #1
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Join Date: Apr 2008
Location: napa , Ca
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mugs51 HB User
Another Newbie!

Hi all, I'm very excited to find this site. Reading all the posts on here makes me realize there are people that understand post-polio and all the different symptons. I had polio in 1952 at the age of 4. It affected my right leg and stomach muscles. Like alot of you, I hid it very well. I was given a brace to wear , but tossed it. Couldn't stand the kindergarten kids making fun of me! All was well until about 5 yrs ago and both legs got weaker and at times I fell alot. It seems like the Dr.'s now a days no nothing about these symptoms, but I was lucky enough to find a neurologist that diagnosed me. He is now retired, so my resources have dried up. He did manage to get me on Social Security Disability. Post-polio syndrome is now recognized by SS and is not hard to get.
The pain that this disease causes is so hard to describe. It moves from place to place and other that ibuprophen, not much seems to work. Like some of the others that I have read, you can sit down and rest, but it hurts more when you get back up.
I find myself cancelling trips that I used to enjoy, because I can't walk very far. My husband suggested that we get a wheelchair, but I'm not ready to give in to this disease that I have tried so hard to hide.

 
Old 04-26-2008, 05:07 PM   #2
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Join Date: Jul 2006
Location: Leroy,NY,USA
Posts: 218
Janet W. HB User
Re: Another Newbie!

Welcome aboard Mugs!!! So glad you have found this sight. What you describe is just the way we all much feel. The pain travels so, somedays I thing I am nuts and then somedays I know I am- LOL!!!!

Everyone here is so kind, and it just is wonderful to have people that know- non-Polios just do not understand- Our loved ones try but it too is difficult.

I am working on getting a PC, it took me this entire year to realize, I do need this - I want to enjoy life without all the pain and be able to get out and about and do things I enjoy. Not have to cry all the time because I just do not have the energy to get out alot of days. If this PC is going to save what I have then I am all for it. It is a big step for anyone but lets save what we have and let people out there know we are survivors and nothing will hold us back.

I realized this last year alot and I know have lost more fighting this chronic illness- I want to try and keep what I have and make the best of life.

So very glad you are here and just knowing you are not alone!!!

Hugs Janet

 
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Old 04-28-2008, 10:59 AM   #3
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Join Date: Mar 2008
Location: Carrollton, Ga. USA
Posts: 29
ronnie53 HB User
Wink Re: Another Newbie!

Hi Mugs and welcome, It would seem as if all at once we all showed up, but we have been around, here you will find that we all are much alike. We are still hard-headed as usal lol, but we know our limits to. There is so much understanding here that you will not believe. I know about the braces I wore two that were out side my shoes until I was 12, but everyone at my school didn't make fun of me I did what they did, played ball, tag, just didn't think of my self as being different. I had 18 operations on both feet and legs from age 12 to 18 most of my teen years were spent in cast and hosptials. Thought I was done with it. Then in 1996 my world as I knew came crashing down around me. PPS took over and the rest is history, I wear 2 braces that go inside my shoes now and like most I hate them. They tried to put me in a wheelchair then and I still don't have one. They told me I had a mental block against going in one and they were right. I spent a lot of time in one and didn't like it then, but I know that the day will come I will have to. For now I just take my time and rest as much as I can. I'll cross that bridge later. Once again welcome Ronnie

HI janet hope you are doing better after your fall.

 
Old 04-28-2008, 01:49 PM   #4
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Join Date: Apr 2008
Location: napa , Ca
Posts: 7
mugs51 HB User
Re: Another Newbie!

Thanks Ronnie 53 and Janet W. for the warm welcome. Looking forward to corresponding with this group.

 
Old 04-28-2008, 06:50 PM   #5
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Location: maryland
Posts: 6
bob51 HB User
Re: Another Newbie!

yes welcome to the board. and i know what you mean about elementary school,i too was made fun off and called everything from humpty dumpty to chester, but as many kids as there were that made fun of me there were more that were kind and were my friends. everybody is real nice here and we look forward in talking with you. bob

 
Old 04-28-2008, 08:47 PM   #6
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Join Date: Aug 2007
Location: martin,tn. 38237
Posts: 44
crochetqueen HB User
Re: Another Newbie!

Good evening everyone! Welcome Bob and glad to hear from more men out there. Janet when did you fall? I must have missed that one. Hope your doing okay. Where are you tonite Cheryl? Hope you didn't have a too rough day. Me, its Monday and I'm dragging as usual. Fixin to take my Ambien and call it a day. Talking about school, I went all 12 years to a large school for the physical, mentally handicapped in Chicago. They bussed kids all over the city. They had a swimming pool, whirlpools, huge physical therapy rooms. The 16 surgeries I had during those school years were followed by Dr.s orders for the therapy. Wish I had that whirlpool tank to get into now. The only thing is how would I get in and out. Know what I mean. Have a good nights sleep everyone and love you all, Phyllis

 
Old 04-29-2008, 01:54 AM   #7
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Join Date: Jan 2008
Location: Independence,Missouri
Posts: 104
tazkc1 HB User
Re: Another Newbie!

hi all,and welcome aboard also mugs...i had a pretty rough weekend phyllis,and am just so wore out after work,and being in so much pain...and here it is already,my day for another physical therapy session,only this one will be after i put in a day of work,so not sure how this one will go...and i wasnt able to do none at home because of the pain...i see the neurologist thursday finally,although i dont know what they will do for me...i come home from work,eat,take a hot bath,go to bed for about 3 hours,get up for a bit,and back to bed again...i dont let anyone at work know just how much pain i'm in,cuz they just dont understand anyway,and dont like to complain...i thought too maybe it might cause more pain when i'm doing so much walking,but two days,i stood at the saw cutting meat all day,and i was in just as much pain,as if i'd walked all day...i need to get another appt. with my primary care doctor to let him know this neurotin does not work,and neither do the pain pills...but in listening to some of ya'll here,sounds like nothing really helps much anyway,so i wonder if anything else will even help...well i hope everybody else is doing well...cheryl

 
Old 04-29-2008, 02:31 PM   #8
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Join Date: Apr 2008
Location: napa , Ca
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mugs51 HB User
Re: Another Newbie!

Quote:
Originally Posted by bob51 View Post
yes welcome to the board. and i know what you mean about elementary school,i too was made fun off and called everything from humpty dumpty to chester, but as many kids as there were that made fun of me there were more that were kind and were my friends. everybody is real nice here and we look forward in talking with you. bob

 
Old 04-29-2008, 02:42 PM   #9
Newbie
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Join Date: Apr 2008
Location: napa , Ca
Posts: 7
mugs51 HB User
Re: Another Newbie!


Oh Bob, you made my day with the "Chester" name calling. My 7th grade year book was signed by a friend that said "Even though you walk like Chester, I don't and won't know anyone bester". LOL Now how is that for poetry?
I've never joined a message group before, so if I'm not replying correctly, please let me know.
I made a commitment for a cruise today and called the ship and let them know that I wanted to reserve a wheelchair. Damn, that was the hardest thing I have ever done. My friends just don't understand the concept! They think it would be cool to get pushed around. Oh well, I have 6 months to come to grips with it. Maybe some devine intervention will cure me before October . LOL
Going out to do a little shopping, have a good day all.

 
Old 04-29-2008, 02:58 PM   #10
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Join Date: Apr 2008
Location: maryland
Posts: 6
bob51 HB User
Re: Another Newbie!

hello mugs51 hope your feeling good today,i like that poetry lol.i just got a wheel chair my self and feel funny useing it let me tell you it helps so much dear.so dont worry about what people might think,just think about how it will help you dear lady. take care ....bob

 
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