Written by Jeff Schwartz for the RSDSA blog.
How and when did you develop CRPS/RSD?
I do not have CRPS, but my wife battles it. She was diagnosed 2015, but had been battling it beforehand. We believe it resulted from an injury in 2003.
What has daily life been like since your diagnosis?
As her caregiver, it has been difficult. I have watched this vibrant woman who enjoyed doing things spend days in bed, trying to overcome tremendous pain. When there is a “good” day, we try to make the most of it. We have a saying that works for us: One day at a time.
What is one thing you wish those without CRPS/RSD could understand?
This is an invisible disease most of the medical community doesn’t understand. The Pain Warrior is not faking, is not lazy, is not seeking attention and is not mentally ill. This is a real physical disease that desperately needs to be cured.
Do not abandon your loved ones. This is not a cakewalk but if you love them, truly love them, you will be there for them.
What advice would you give to newly diagnosed Warriors?
Do not give up. You never know what tomorrow brings. You are not alone.
Anything else you would like to add?
My wife tells me I am sometimes a bigger advocate than she is. I use what opportunities and resources I have to bring awareness to others.
As an example, I am a well-known whiskey reviewer, and five years ago I created a #30DaysofBourbon Challenge that runs every September for Bourbon Heritage Month. There are thousands of participants and it continues to grow each year. I use this Challenge, where I post daily on Facebook and Instagram, to give a shoutout to the RSDSA and suggest participants donate $30 or more to a charity of their choosing (with a suggestion for the RSDSA).
It is my deepest hope that one day, there will be a cure, and will be generic enough to help everyone battling RSD/CRPS.
Please consider making a donation to RSDSA today!