Are You Dealing With Muscular Dystrophy?
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Are You Dealing With Muscular Dystrophy?
| Wed, 02-07-2007 - 5:50pm |
Hello my name is Brinda I am
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Nadine - deenie1979
Thankyou Sooooooooo Much Nadine!
Your sweet words of encouragement really touched my heart. You really brightened my day.
I totally agree with you that we are the way we are for a reason. My life has been filled with trials, as I'm sure yours has also. But I look back and realize that with each trial, a valuable life lesson has been learned, even in times of tragedy. It even seems that each trial has only served to prepare me for the next one which is usually much tougher than the last.
It's scary in a way because I begin to think, "What's next?" But I know God's timing is perfect and with each day, He teaches me new things, new ways to cope, and reminds me that His strength is sufficient for anything I must go through.
One day, I spent some time reflecting back on my trials and wondering what purpose they served. Then I realized that God had a plan for my life, and I began to look back on all my trials as learning experiences. For you see, God wants me to be a witness to others about His greatness, His strength, His unfailing love, and His faithfulness. How could I have ever witnessed His qualities, if I had never fully depended on Him?
I would like to think that I would have fully depended on God for all my needs, even if my life had been worry-free. But I know that's not true. For in my greatest times of weakness, His greatness was magnified! In my deepest sorrows did I become so close to him that sometimes I believed the tears rolling down my cheeks were His very own.
Through each trial, He has never failed me. His is eternally faithful. He never changes. Life is hard and there are many lessons to learn, but He will guide you through each one and give you every ounce of strength you need to endure. May God bless you as you travel through life's lessons. Just keep in mind that with God you can never fail.
MAY GOD BLESS YOU ALWAY'S MY NEW FOUND FRIEND!
Love and Prayer's:
Brinda (hazelangeleyes)
 
Nadine - deenie1979
Brinda, I do not have muscular dystrophy but I worked for the MDA for 15 years until 1986, when I became disabled. I knew hundreds of patients and their parents and watched them go through the stages of the disease. Exactly what kind of dystrophy do you have, if you don't mind me asking? Where is your pain? What do you do for the pain? Do you work? Who helps you? Sorry to ask so many questions. A little about me. I became disabled from implants that were recalled by the FDA after the inventor falsified documents. I have had 30 surgeries on my jaws. I can't chew, mumble when I speak and I am in horrendous pain. My face has nerve damage which makes my face look contorted. I take lots of pain meds; and have a difficult time taking care of myself. I stay in bed most of the time and sleep as a side effect of the drugs. I have no friends, failed at 2 marriages and don't want to be a burden to my only child who's a 26 year old female.
I'd really like to hear more about you and at least give both of us an outlet. Some of the things happening to you I either know about or I am living with also. Hope to hear from you soon! Stephanie in Baton Rouge, LA.
Nadine - deenie1979
Thanks for the warm welcome. I think I found this web site just in time. I've been feeling so isolated lately. I have lots of support to give and I sure could use some myself. Boy, you have a smorgasboard of problems to deal with. How do you do it???? A good support system I hope. Again, thanks and you'll be hearing from me. I get tired of talking to my dog! Stephanie
Nadine - deenie1979
Hello Stephanie its great to hear from you. I was told I developed Limb Girdle
Muscular Dystrophy in my early teens because I failed my first breathing test
at 19. I am now 49 years old and it has affected my heart by giving me congested
heart failure because my heart muscles are affected. It has also given me Copd
because my lungs are affected. I am on oxygen 24 hours a day. I am also almost
completly wheelchair bound. Mda helped me get a power wheelchair in September
of 2006. I am in almost constant pain. I try very hard to keep walking but my
legs feel like lead and the pain in my legs, back, and hips is almost more than
I can bear. I also hurt in my lung area where I struggle to breathe. My daughter
and my husband help me with doctor visits. I never go out by myself its just too
differcult. I don't work I am on disability, which leads to alot of time along.
My computer is my outlet too the world. God is my comfort through the pain, I
have been shut in except for doctor visits since October. I have had pnemonia,
the flu, the stomach bug and everytime I think I'm getting better I catch something
else.
I'm sorry to hear you too are in constant pain. You can drop me a line anytime,
I love making new friends. If you don't want to write me here you can write me
at angeleyes24055@yahoo.com. I am from Virginia. As for taking care of myself
its hard my biggest problem is falling because if I fall I can't get back up.
So far I'm by myself why my husband works, on my daughter's days off her and
my 2 grandchildren come to visit. She is 23 her name is Heather Dawn and she
has been married for 5 years this July. She has a little girl 3 her name is
Nellie Kay and a little boy 19 months old named Jerry Lee. They are so
precious. I feel God has deeply blessed me when I look in my family's eyes.
Life is hard but with God's help I can face anything.
As for having no friend's lookout you just made one. Have a blessed day Stephanie,
I hope to hear from you soon.
May God's Blessing's Shine Upon You:
Brinda (hazelangeleyes)
 
I look forward to hearing from you, have a great night and know you have a friend
in me.
Talk to you soon!
Brinda (hazelangeleyes)
 
One of the hardest thing I find to deal with can be strangers or
even family and the things they say pretaining to my health. As
I go through my everyday struggles dealing with many health
issues brought on by muscular dystrophy, you would be surprised
at what others can say either out of curiousity or pure rudeness.
Speaking stright from the heart, this is one of the strangest
question's for me.
What would you give to be normal, she asked looking me straight in
the eye. I paused a moment in order to give, a completely honest
reply. What would I give to be normal, the question, itself, wasn't
new, you see I'm asked it all the time. Quick came to mind all the
things, I could no longer do.
The list is long, and the list is sad, of that I am painfully sure.
I could sit a while, with my "losses list" and continually add to
it more. I returned my thoughts to the question, what did it really
mean, and I decided the answer was simpler, than at first, to me,
it seemed.
I faced my well intended friend, my response, I knew, was true. In
every way that matters the most, I'm just as normal as you.
My world is restricted and narrow, compared to where you may reside.
However it doesn't mean my spirit or soul, need lessen in worth or
size. No matter how weakened my body, I'll persist at any length,
not to allow my frailties, to stop my inner strengths.
I wish, I hope, I dream, I pray, quite often, I sit and cry. As long
as there's laughter and love in my life, I know I'll continue to try.
As children of God our creator, we're equally valued the same. We're
not defined by health or wealth, position, power, or fame.
I may never be fully, physically well, while here upon our earth. But
normal or not, I'll do my best, not to let it determine my worth. I may
walk very slow, most times I'm wheelchair bound but I will always be a
child of God, and I will always do my very best to be the best I can be
for God and for my family.
Have A Awesome Day, talk to you all soon!
Brinda (hazelangeleyes)
 
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