Friday, January 7, 2011

Reaching Out to Change the World

Last week, I think I had ?300 friends on FB. After requesting friendships from mutual friends, that number has now grown to over 1600. In a week. For this, I thank God.

I also thank God that one of my friends came back to me, and my life has a filled hole in it now. Whew. I Praise the Lord for all His goodness!

Some one wants to make a movie out of my book. Again :-).

So, if you have a chronic illness, are under age 65 and in a nursing home, lay in bed because you simply can not get up....we are here for you. I hope that my story is your story. I hope that others who can 'wake up and go to work' can come to realize that for us, we have to 'wake up and get ready to shower, then shower without fainting, then get dressed. Huffing and puffing as if we have COPD, we then have to brush our hair and teeth. Maybe put on a little lipstick or a pair of ear rings. Deodorant, perfume.

Then we collapse. We have already expended 33% of our total ATP, our energy, for the day. So by the time we get in the car with our belt on, 50% of our total ATP is used up. We can feel the hollowness in our chest, and our blood pressure wreaks havoc on our heart rate, and vice versa.

So the next time you get up and go to work, please stop. Appreciate that your life is not broken down into little pieces of life...and that you can finish things that you start. Walk with me on YT, dysautonomiaMD...or on FB, Margaret as we grow.

When we are 'big' enough, let us see if we can influence medical professionals to recognize that there is a big problem. For some of us, it takes 4 months to get a diagnosis. For others, it takes 29 years. We know there is something wrong with us, yet the doctors tell us that there is not. Or, it is PTSD. Or depression. Or female hormones.

"But doctor, there is something seriously wrong with me, and you have to find it"

That statement kept me out of nursing homes not once, but twice. And because I am an MD, I knew they could not admit me to a nursing home without a diagnosis. So I told them that. And I told them that there was something really wrong with me, and they had to find it.

So, eventually, thank God, they did find it. It was nothing I had ever heard of, this dysautonomia. But we share what many other diseases have: headaches, fatigue, hypotension and/or tachycardia, loss of family support, distancing of loved ones....much less the caregivers that are supposed to give me a bed bath: instead, there is jewelry and there are clothes and Christmas balls missing from my house. I didn't know, because it took me 5 years to get out of bed and walk around the house.

We need people who care. People who know what it is like to suffer, or to have a loved one suffer. My goal is to have 5000 FB friends, and then increase awareness of Invisible Illnesses so that we can take it to the Legislation....take it to the Medical Boards....get this problem fixed for the millions of people who will follow in our footsteps.

So thank you for going to my FB and my YT. Send me friends that open doors for little old ladies, ok? I am only one person, but together we have a Voice. Thank you, and get to it: check out my YT videos, leave a comment here and now, and/or follow me on FB. I need to get to know as many people as I can, so that I can help.

I can't practice medicine any more...but I can help us to come together in one accord, to improve things for the future. I think in the end, that is what we all want: for the next person to just get their diagnosis in a few days. Not a few months or a few years. Help us. Thank you.

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