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Old 05-27-2010, 02:57 AM   #1
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Introduction

Hi there

I was diagnosed with FHMD at the age of 19 and I'm now 37.

I was married for 7 years and have 2 great teenage boys.

I got divorced to give my ex the freedom to live a "normal" life because when we met I wasn't the way I progressed and he could not handle to be with me

Well to make a long soppy story short I changed from a very active person to a very inactive mostly home bound person.

I am fairly attractive and when I sit behind a table a get a lot of stares and smile from men but then I get up and move to my scooter those stares and smiles get turned away

How do I actually meet someone that will see past this disabled body and see my personality and looks when not in the chair??

Mandy

 
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Old 05-27-2010, 10:15 AM   #2
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Re: Introduction

Hey Mandy,

I've read all of your posts. You sound so much like many of us on this board. I'm glad you found "us". The typical story for a lot of the regulars here is: slow as a child, diagnosed as an adult, embarrassed or scared to go out, feel guilty about dragging our spouses or kids down because we're not "normal", and everything else you've mentioned.

Feel free to read my other posts, I'm sure a lot of it will sound familiar! I'm sorry you got divorced. I am fortunate that my wife of 24 years has handled this pretty well. My daughters are 18 & 21. They can help a little but cannot lift me, nor can my wife. They're too short. But my wife and I are friends and get along good. My only issue is the absence of romance. I wasn't a bad looking guy but the MD makes me clumsy, awkward, out of shape and not feeling very attractive so I don't bring it up much any more. It's very apparent that the no romance issue is much harder on me than it is her. She's 48 and can live without it. In every other respect though, we get along great.

I hope you can find a guy that can see past the physical and sees your personality. You sound like you have a good attitude like many of us here. Welcome and post whenever you need to.

Mark

 
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Old 05-27-2010, 02:04 PM   #3
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Re: Introduction

Hey Mandy,

Welcome to the board, you sound like an amazing woman, and I hope that one day the right guy will come by and be swept away by your charm. Yesterday I was waiting for my husband outside a store, and a young man blew me a kiss from his car. I just kind of chuckled and thought "If you only knew".

I suffer from LGMD 2I, and as Mark said slow as a child etc. I am 35 and married to a great guy, who is dealing with this awful disease better than I am. We also have a great team, and I am lucky that I am small enough for him to help me up etc, but boy do I hate depending on people for everything.

I have been, and still am suffering from some pretty severe depression/denial issues. The wonderful people here on healthboards have definitely helped keep me sane!

Feel free to vent/laugh/cry anytime you want.

P

 
Old 05-28-2010, 12:48 AM   #4
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Re: Introduction

Thanx for making me feel welcome

I actually got a tear in my eye when I read about other people responding to me regarding the way I feel and what I'm up against

I haven't spoken to other ppl that has the same problems or even MD that I do.

I've basically become a recluse because I feel "ugly" most of the time. Because of my disability I had to resign as a bookkeeper because I could not get into the office without the fear of falling.

After my divorce I've dated a few guys but it was mostly to get as much physical contact from them before my body became more "ugly" as it is now.

I've been single for 7 years now and the lonelyness is getting to me. I need to be loved more than emotionally and I crave to even kiss someone as I'm still young (doesn't matter what age you are) and I need to feel "wanted" more than emotionally supported.

I really know how you feel with the absence of romance and I think we need it more than "normal" people do because we basically feel rejected when someone look at us other than a support structure than a romantic partner.

Well I do believe that there is someone out there one day (hopefully soon) that will sweep me off my feet (lol!!! both ways that is)

 
Old 05-28-2010, 12:54 AM   #5
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Re: Introduction

Thank you for the compliment

I think someone that is married with a supported spouse is so lucky. I'm not angry about my divorce and I think my ex needed someone more physical to be his partner to enjoy life with him that I could not do. He is married again and she enjoys to do the hiking thing etc etc (I would rather spend my time is a shopping centre or watch a movie)

I was a very active teen (WP netball and athlete) and when I see my kids take part in athletics I always cry silently because I miss that person I was and I'm proud that my boys can do what was "robbed" from me

I used to be content with MD but all of a sudden I am agry and I'm getting depressed since resigning my job (struggling to get into the office etc etc) I hate sitting in this house and waiting for the boys to get from school to go out somewhere and well them being teens being with mom oh well not so cool anymore

I'm glad I stumbled across this website and I hope the kisses we both get from behind closed car doors will increase regardless of them knowing what these bodies is capable of doing.

 
Old 05-30-2010, 08:50 AM   #6
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Re: Introduction

Hi Mandy --

I just realized I never posted in this thread to welcome you! I'm so sorry. I meant to, but got distracted. I tend to do that these days.

You'll find us regulars very friendly and supportive. Sometimes all of us just need to vent about this and this is a safe place to do it. We all understand, which is something most of us just can't find in our regular lives. Well, at least not the understanding that we get here.

Welcome aboard and I look forward to reading your posts.

Kathy

 
Old 05-31-2010, 01:11 AM   #7
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Re: Introduction

Thank you for the welcome

I've been thinking about the comments about my post about the diagnosis of ppl and my feelings about this

I have FSHDand limb girdle combined according to dr's

After my diagnosis the dr that done the test when I was 19 years old told me that I have MD and will be in a wheelchair in 5 years time

I was a very active teen and went to see the dr about not being able to lift my arm playing netball to shoot goals. Amagine going to a dr to ask such a question and being told that I will be in a wheelchair in 5 years time

I told my mom at that time that he was talking crap and dismissed the diagnosis completely

I led a normal life after that and didn't give it much thought at all. I never done research to find out what this thing was because I just didn't care

A year later when I could run properly anymore I got a fright and thought that there must be something wrong here. I only then started to see the dr's again to find out about the MD I have

I was put through numerous test, being cut for biopsies, having needles stuck into my legs that hurt like hell, blood test, the list goes on and on.....

I still didn't believe what they were saying and I refused to go to any dr's ever again.

My body starting changing and "wings" started to appear. I remeber looking into the mirror one day and got such a fright seeing my scapula and just wanter to cry. I was being disformed.

I got married at the age of 21, started a family immediately after dr's told me not have kids. As the pregnancy progressed the dr's again send me for test and I had to show students how I get up and how my body changed and how the pregnancy is changing the form of my body. I was so embarresed sitting there, bending and standing up with this tummy in my underwear. DISGUSTING!!!

I had a healthy boy and some test was done to see if he had MD. Clean. Done this with both my boys.

After that things just started going downhill and I had to walk with a cane just to get around. I started to get angry extremely angry and I became a very negative person. I still refused to accept the fact that I was becomming disabled.

I started to struggled to get up, muscle contractions, falling etc etc. I still refused to accept that I was becomming disabled. I went to see a dr because of back pain and I was told to limit my walking and I refused.

After a few years I had to buy a scooter as my legs just didn't want to walk anymore. This thing stood in the garage that eventually the battery died because of not being used. I just refused to use it!!

It came to a stage that I had no choice and hated every moment someone had to take that damn thing out of the car just so I can get to a certain place.

I still didn't accept te fact that I was a disabled person and pushed myself to do everying myself even though I kept falling.

Still today I push myself to do everything like cleaning the house and strain my back and use the little bit of mobility to get around the house and do my washing, cleaning up, cooking and taking care of my boys.

I take pain killers sometimes just to do the things around the house and still refuse to accept the fact that I am different

Sometimes this MD get's me down but I will fight this thing as long as I can.

That is why I refuse to go for all these test and being told I have this and that and what degree I have it

 
Old 05-31-2010, 11:30 AM   #8
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Re: Introduction

Mandy this all sounds sooooooo familiar! I had a cane for a year before I would use it. Then I had a roller walker for a year before I would use it. I was vain and embarrassed. And speaking of embarrassed.....you should have seen me at 25. In pretty good shape. Now I have skinny arms and legs and a pot belly because of the LGMD. But I try hard to keep up my hygiene and appearance. And even more important a smile and good attitude.

I can tell you this. I use my scooter all the time! I ride it all over town. I don't care anymore about people staring (which they really don't). The freedom, sunshine and fresh air outweigh any embarrassment.

Hang in there. Believe me, we all understand completely!!!!

Mark

 
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