An Email to Family and Friends

To my family and friends,

As of this week I have been officially diagnosed with CRPS, Complex Regional Pain Syndrome, for full year. The pain in my right foot, which started in June 2008, has since spread to encompass the entire right side of my body. While pain, by far the most overwhelming symptom of CRPS/RSD, is usually isolated to the right half of my body, please know that this is a progressive disease of the entire central nervous system. Whether this is the first time you're hearing this, or if you've been following my progress through family members, FaceBook or my blog (in desperate need of an update), please do me a HUGE favor and watch the following two video clips. They total less than 10 minutes. This Doctor clearly defines what CRPS/RSD is and the furthest medical science has come in terms of diagnosis and understanding.

What is RSD/CRPS?
http://www.youtube.com/watch?v=tBb_XUZi2jo

Recent Advances in RSD/CRPS... an extremely validating video for me.
http://www.youtube.com/watch?v=-jLUQpaZKf8

Where am I in terms of medical treatment? For the most part at the end of the traditional, western medicine line. This week I increase the dosage of a highly controversial drug, Ketamine. Ketamine, or "Special K", was originally formulated as a horse tranquilizer. High doses of this drug essentially reboot your central nervous system. In addition to the 9 medications I currently take in an attempt to control RSD pain and other symptoms, I have tried various forms of therapy... physical, psychiatric, drug infusions, nerve blocks and a Spinal Cord Stimulator trial implant. To date none of these have helped. Wait, this is not entirely true. Without the medications I am currently taking my pain would be a 20 on a scale of 1-10 every hour of every day, absolutely. Instead my pain ranges between an obnoxious 6 and unrelenting 10+. The pain associated with RSD is the most severe type of chronic pain according to the McGill Pain Index, a medical guideline doctors use to gauge pain levels. (See "Causalgia", the Latin name for RSD.) I walk with a cane always and need a wheelchair for walks longer than 5 or 10 minutes.

I am not searching for pity, although prayers are most welcome. The most helpful items you could offer me now are compassion and understanding. Please understand that although I do not email or call, cards, letters and even packages sit in my home, postage affixed, gathering dust. Although a group email or blog might relay a sense that you are not each individually important to me, compassion of my limited strength and clarity of mind is truly needed. For me this is a daily, nay, hourly struggle. I have lost both my physical and mental independence. I am now a recipient of SSDI. Driving a car myself is becoming unsafe; Being in a car for more than an hour is unbearable. I know that several of you are not even aware that within the past couple of months I had to move closer to my mother and sister because of how much I now depend on others. Those change of address post cards sit, ready to be mailed, but are held back by my own pride... having not mailed them in a timely fashion to start with. James, who just celebrated his 17th birthday, has become my primary caretaker without complaint. He also needs your prayers, and perhaps an occasional escape from his increasingly demanding mother.

Please feel free to share any of this information with anyone you see fit. With more awareness, a better understanding and new diagnostic tools being developed every day, I may not be the only person you will know with this chronic pain disease.

My love to all of you!
Carey