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Old 04-13-2012, 12:09 PM   #1
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Hi, I'm new here!

My name is Selma. I'm a 22 year old female from Central Texas. I have LGMD, I am at a stage right now where I can no longer get up out of a chair without a table in front of me. I can't go up stairs or steps. I can't get up off the floor and my balance is horrible. I also walk very slow and waddle.

I need a place to vent and I feel this is it.
I've been reading this message board all day today. I've cried plenty of times. Your stories are so real to me. I'm glad I am not alone.

I feel ashamed and embarrassed of my illness. I also feel guilty for feeling that way. The only thing that makes me feel a little better is when I think about the fact that when I see someone with a disability or anything out of the ordinary, I don't think twice about it. I don't look at them any differently and that helps me think people don't look down on me because I walk funny or stick my butt in the air when I get up from a table.

What hurts me the most is not ever having children. I've wanted to be a mother since I was a child. Not biologically having a child is heartbreaking to me. But fortunately I have a wonderful boyfriend who has two little girls 9 and 7 whom he has custody of. I love them all very much and they love me too. They don't care that they have to walk slow for me or pick stuff up off the floor for me.

I'm looking forward to getting to know ya'll and sharing sad, happy, hopeful and funny stories.

I did want to ask ya'll a question. I recently noticed when I go out and about my legs and feet will burn very very badly, even if it's only from the car to the store door. Do any of you have this problem? I don't know if it's psychological because my feet don't hurt at home walking around. They hurt when i'm out and i'm thinking over and over and over don't fall, don't fall, please God don't let me fall.

 
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Old 04-13-2012, 01:31 PM   #2
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Re: Hi, I'm new here!

Selma
Welcome-Your first paragragh fits me to a tee. Only diff is that I am 60. I have 3 daughters and 7 grandkids. Only my middle daughter has LGMD like me.

About the burning in your legs and feet.Let me ask you a silly question. Do you wear shoes in the house. Many of us have less problems when we're not wearing shoes-in balance,diff surfaces,and in my case I have more pain(thats probably not the right word but I wouldn't call it burning)when I am fighting walking with shoes on. And they have to be flat. Just a thought.

Hope this helps a little
Later Dreaman

 
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Old 04-13-2012, 08:53 PM   #3
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Re: Hi, I'm new here!

Quote:
Originally Posted by Dreaman View Post
Selma
Welcome-Your first paragragh fits me to a tee. Only diff is that I am 60. I have 3 daughters and 7 grandkids. Only my middle daughter has LGMD like me.

About the burning in your legs and feet.Let me ask you a silly question. Do you wear shoes in the house. Many of us have less problems when we're not wearing shoes-in balance,diff surfaces,and in my case I have more pain(thats probably not the right word but I wouldn't call it burning)when I am fighting walking with shoes on. And they have to be flat. Just a thought.

Hope this helps a little
Later Dreaman
I never wear shoes in the house! I feel so much better when I walk bare foot.
I feel better balanced for some crazy reason.

 
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Old 04-13-2012, 09:27 PM   #4
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Re: Hi, I'm new here!

(((Selma))),
I cried when I read your story as you are young and wont have bio kids. How long have you had your LGMD?
If you need to vent I am available. I just found this board a few days ago and just got the word that I do have LGMD. I am the 5th person in my family to have it and am the one that was able to finally be tested on the one blood test that gave us what mutation is in our MD. I have lived a good share of my life dealing with my father and uncle with MD.
I am in the early stages of MD...upper arm weakness, leg weakness on long walks and walking a lot slower. If I walk to much my hips start to hurt. But having dealt with other family members I know what is ahead for me and it scares me as my youngest is 3 and I know I will not be able to do much with him when he gets older.
If I had known I would have this at 39 I would have been like my older brother and not had kids. As my 5 kids all have a 50/50% chance of getting it and I really hope none of them does.
Just know I am open to listening to you as I am going thru all my anger, hurt and etc.
Darla

 
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