Thursday, April 10, 2008

RSD has met its match. And it's going to lose.

HERE I AM! Again, thanks you guys for caring enough to wonder how I've been.
ok, so what have I been up to?
Besides the obvious "KIDS" reality of busy, I've been giving most of my attention to my friend Erin. My friend Erin is a very sick lady who has had the worst hand dealt to her than anyone I have met to date. What's wrong with her? She has a condition called RSD. It is also referred to as CRPS (<-that was a on it to open)
It's a debilitating condition to have.
Everyday, Erin blows my mind. She gets up. She gets dressed. She endures more pain than one person should ever experience in a lifetime... everyday... every minute of everyday. Pain is measured on a pain scale called the VAS scale which is out of 50. So, for example, someone who is dying of cancer, experiences pain somewhere around a 27-28/50. People with RSD experience pain levels of around 42-43/50! So, ya, try and wrap your brain around that for a second. It's just nuts. Her support system is very, very small. The lack of education in Dr's worldwide is ridiculous, and as you can imagine, getting support from your Dr is almost unheard of. RSD effects 1 in 60. That is nuts to me, considering everyone I've talked to about it has never heard of it either... including Dr's! What does this tell me? RSD needs awareness desperately.
There is a Dr, however, (Dr.Schwartzman) (<- click that link!! and then after you read that page, scroll to the bottom and click on the next link for the CNN report) who has created a treatment that is being practiced in Mexico and Germany. It is a coma treatment. A Ketamine Coma, to be exact. I don't know a lot about the drug itself (yet!), other than when someone with out of control RSD goes under a 5-7 day self induced coma, they are having amazing results. These people, desperate for some kind of quality of life, can get back to something like 60% less pain, which to someone living with so much pain, 60% less pain is a life saver. Literally. What is the main cause of death with people with RSD you ask? Suicide. So, um, ya.
Needless to say, I've been doing a lot of research and praying. Both of which seem to be working. The chain of events that have been unfolding in the last several weeks is mind boggling, at a very real level. When prayer is answered, it tends to make itself very clear. So the good news for Erin right now is we actually got her a date to see Dr. Robert Schwartzman on October 19/2009! Her appointment will be with him in Philadelphia. So... yea! ROAD TRIP! The cost of the coma is around $20,000 US... so needless to say, I will be getting a fundraiser of some sort together VERY very soon. It will cost less than $500 to actually go see this Dr. for the initial appointment, plus airfare, etc.
Erin has endured the gripping clutches of RSD for 9 years and is the strongest person I have ever met in my life. The way this woman copes with the amount of pain she is in would shut you up forever about your daily aches and pains or some old football knee injury. Like I said, she amazes me. Completely wows me. I wish I had one tenth of her strength. This is a woman who was a triathlete- a gardener/landscaper- a home care worker- a body builder- a writer- key word? WAS. Still though, years later, she has not even fully accepted being sick and refuses to give in to pain. She keeps going. She fights it with every ounce of her being.

It is interesting to sit back and realize why someone has been brought into your life. You may be thinking that Erin has been brought into my life so she could get a support system in place, learn about some new and promising treatments, hook her up with a few appointments, fill some small need that would help her days be a little less challenging, or even just to be the person who LISTENS to her. Who has UNDERSTANDING and wants to help...NEEDS to help, but I will disagree with you. Erin has been brought into my life because I desperately need her. From the moment she entered my life, she has been one of the reasons I've made it through MY days. She is MY rock and I love her completely and unconditionally. She is wise beyond her years. I don't want to take the focus off of her and put it onto me by listing off the hundreds of things she brings to my life. She is thoughtful and caring and loving and as I'm sure you could guess, as funny as me. The belly laughs that this woman evokes out of me is always just what I need at the right moment. Not to mention the joy she brings to my children's lives.

So, my friends, please... please don't disregard this post as something you feel bad about but can't do anything about. Because there is. I will be figuring out this whole fundraising thing. I've never had to even think about raising money before. I'm not really sure where to start. So, I guess I can call this post my start. If any of you out there have any fundraising experience, please contact me with suggestions or ideas or advice on anything you think might make this whole process smooth and effective.

Pain is her reality. It doesn't have to be this way.

I love this photo of her.
She is so beautiful.
Her smile lights up a room.
Her friendship lights up my life.
She smiles through her pain.
She keeps smiling inspite of it.
I am so honored to be her friend.
Erin, I love you Sweetgirl.
Thank you for chosing me as your friend.