Oh my goodness! Another year is less than two hours away. Part of me just wants to wish my readers another great year. But I can't do that without acknowledging those many friends of mine who haven't have such a great year in 2012. Like my friend, Laurie, who inspired this blog. She has RSD.
I have another friend who is in need of a bone marrow transplant. Maybe it is a coincidence that tonight my son suggested my husband and I hurry out to look at Christmas lights. Actually, they were specific lights. Not far from our home is a fabulous display of lights that blink to music.
Tonight was the last night to see them. They were there from Thanksgiving until tonight. Imagine something so delightful, close to home, and I hadn't even known they were there.
However, one of the most special things about these lights is that they are there to draw attention to the need for not only bone marrow donors, but donors for organs and tissue. It is also meant as a tribute to those people who have passed and left a legacy to other people they don't even know, so that those people can live a healthier life. Yes, a tribute to donors and their families.
The short of this is that the mother in this family needed a lung transplant and was one of the lucky ones who got on. You can read their story here. They are also raising money to help others going through the same thing as they did. Please note the statistics in the article. I hope it helps all of you understand just how important it is to be a organ or tissue donor.
Now, back to Laurie. You see, with RSD there is no transplant that will help stop her life of pain. In fact, surgery of any kind will likely only make it worse. It was surgery that started her condition. In one of my next blogs I will explain more on what is known about how RSD starts.
I want my blog tonight to be simple. I want it to be filled with hope for a brighter new year. I looked at the beautiful display of lights tonight and realized the tribute is there because sometimes there is hope. Sometimes miracles do happen. A mother got a lung and is alive to watch children grow and have families of their own. It is possible more will be discovered to help people with other conditions, too, like RSD.
There is hope for my friend, Laurie, and my friend in need of a bone marrow transplant. That is my prayer. And a prayer that 2013 will be a year filled with wonderful miracles.
Monday, December 31, 2012
Wednesday, December 26, 2012
For Laurie
I have been thinking of writing this blog for some time. Almost since I learned my dear friend Laurie has RSD, Reflexive Sympathetic Dystrophy, a condition that in its own way is as devastating as Alzheimer's Disease. As I have watched Laurie deal with RSD, my admiration of her has grown.
What is this condition? Well, that is what I hope to tell as I write this blog. I will be studying the condition and the people who have it. I will offer interviews from people with RSD and family members who so often misunderstand the problems associated with it. And other family members who are looking for ways to help their loved ones who have RSD.
As for today's first post, I simply want to talk about Laurie, who has recently learned that RSD has spread through her entire body. My friend lives in daily pain from the disorder. It is her constant companion. She has trouble sleeping from the pain, and awakens again to pain. A small bump or bruise may be completely ignored by us, but for Laurie it causes excruciating, lasting pain.
Laurie's calling is to help others who are less fortunate. While she not only struggles with pain, she works hard to hide the pain. She does not want the focus to be on her, rather the people she is trying to help. People who are suffering in ways of their own.
Her prognosis is not a positive one as there is no cure for this condition. There are pain management and procedures, many not covered insurance. She seems to be between a rock and a hard place, yet she continues to strive for as normal a life as possible.
Today I dedicate my first blog on RSD to Laurie. The first of the faces of RSD I will profile in this format. Click here to learn more about RSD.
What is this condition? Well, that is what I hope to tell as I write this blog. I will be studying the condition and the people who have it. I will offer interviews from people with RSD and family members who so often misunderstand the problems associated with it. And other family members who are looking for ways to help their loved ones who have RSD.
As for today's first post, I simply want to talk about Laurie, who has recently learned that RSD has spread through her entire body. My friend lives in daily pain from the disorder. It is her constant companion. She has trouble sleeping from the pain, and awakens again to pain. A small bump or bruise may be completely ignored by us, but for Laurie it causes excruciating, lasting pain.
Laurie's calling is to help others who are less fortunate. While she not only struggles with pain, she works hard to hide the pain. She does not want the focus to be on her, rather the people she is trying to help. People who are suffering in ways of their own.
Her prognosis is not a positive one as there is no cure for this condition. There are pain management and procedures, many not covered insurance. She seems to be between a rock and a hard place, yet she continues to strive for as normal a life as possible.
Today I dedicate my first blog on RSD to Laurie. The first of the faces of RSD I will profile in this format. Click here to learn more about RSD.
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