I am new here, need some advice!
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November 17, 2008 at 1:35 pm
Hello everyone, I am so happy to have found this web page.
My name is Maria I am 22 years old, I was diagnosed 5 years ago, my case was very severe, my heart stopped and doctors almost declared me death, but I “came back” I was in the hospital for a month with feeding tub, my whole body was paralyzed (could not even talk or open my eyes some days).i had just started dating a guy named John (now my husband) and I remember telling my mom “I don’t want to die, I want to marrie John and have kids with him), John lived in Chicago and I was in Mexico city at the time, so any time my vital signs went down, my dad would have John call me because they would go back to normal. He went down to Mexico to be with me and my doctor said that he was my best medicine, it was then when i knew that he was the one for me.
When I left the hospital I was better but still paralyzed, with only two or three months of PT and electric Shocks trough out my body, I was back to normal, now I live a healthy life, no symptoms at all, we have two kids ad my life is great.
I want to do something for people who are suffering this horrible sickness, I really would like to get involved and get something good out of that expierence.
Does anybody have any advice?, maybe you know of a group that I can join.I hope everybody is doing well.
Sorry about my spellind and grammar, but english is not my first language.
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November 17, 2008 at 2:15 pm
Hi Mariah!
How nice of you to offer your experience. Have you tried contacting the foundation? They could better direct you if there is some liason position available in your area. I KNOW there are often questions on the site regarding gbs and pregnancly after. Maybe you could mention to the foundation you would like to be a contact for that. They usally put ones phone number on the back of the news letter. If you did not want to be that involved, you could just check back here every so often. Glad your life has turned out so wonderfully!! Best wishes to you and your family. Where in Chicago is your husband from? I am from Chicago and live in the suburbs of Chicago now.
Dawn Kevies mom -
November 17, 2008 at 5:20 pm
It is always wonderful to hear sucess stories and that people are living normal lives after GBS. As Dawn said, there is a lot of concern to be really safe for mother and child to be pregnant after GBS and so this is also very positive.
I have a question. What do you mean about electric shocks throughout your body? Was this part of your treatment?
I have a suggestion. Would you rewite what you said in Spanish? There are a lot of people in the US more comfortable with Spanish than English and there is little information or success stories available to give to them. It does not always seem the same going through a translator. I ask this because I was helping a family today that really, really wished they could talk to someone in their own language about a rare illness. Their language is not Spanish and illness not GBS, but it is still that person to person contact that makes such a difference. If you wrote your story in Spanish, then liasons could give it to Spanish speaking individuals as a lantern of hope that people that are paralyzed can get better and live normal lives after this illness.
WithHope for a cure of these diseases. -
November 17, 2008 at 11:25 pm
Hi Maria! Hate to hear of the terrible illness you had and am glad that you ended up getting well again. But you had one very beautiful love story that made me smile. Being here on this web site with the others can certainly lift many spirits and give them hope. Nice to meet you in here!
Hugs
Linda H -
November 18, 2008 at 3:01 pm
Dawn Kevies mom;
We live in the south side of the city because my husband is a police officer, what suburb do you live in?
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November 18, 2008 at 3:04 pm
WithHope:
The electric shocks were part of my treatment; they connected me into shock machine and they would turn it on for 20 seconds, and i would rest for 10 sec. for an hour, every day for about two months, my doc. said that this would wake up my nerves.
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November 18, 2008 at 5:15 pm
I was born on the south side, born and raised. Go White Sox. Used to hang out at 47th & Ashland and Marquette Park. I have never heard of shock therapy, do you mean a tens unit? I do remember when I had issues with my feet there was a deep tendon shock therapy, do you mean that?
Dawn Kevies mom
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