I can't believe it is already that time of the year again! November is RSD/CRPS Awareness month!
Three years ago my mom began writing this blog as a way to keep our close family and friends updated on my progress as I underwent the ketamine coma in
I never imagined that the story would spread as big as it has, and that so many people would read and follow along! It's just amazing.
In the process of sharing our story, something that has become very evident to us is that while a very severe,life-threatening, case of RSD like mine was, is rare, RSD itself is not as 'rare' as most might think.
I was shocked after my story was on TV earlier this year by the amount of emails and calls that came, and still continue to come! So many are suffering and sadly, a lot of these stories involve children.:(
Recently my sister Michelle wrote a report about RSD for her English class. The teacher asked her to stay after class and shared with her that last year he was diagnosed with RSD in his arm following shoulder surgery. He teaches everyday through constant pain! You would never know unless you asked.
Though every story is different, the main theme is always the same-- an unexpected (usually minor) injury, surgery or illness occurs and sends the nervous system into an overdrive of constant, unrelenting, burning pain, which usually spreads to other parts of the body, causes secondary neurologic symptoms and loss of function, and seems to respond poorly to most treatments available.
RSD is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index. Worse than that of cancer, childbirth and even amputation! It's a vicious cycle that has been best compared to an engine revving out of control, even though the key is no longer in the ignition.
Hearing all these stories led me to look up the 'actual' statistics for RSD in the
I found that RSD is listed as a "rare disease" by the Office of Rare Diseases of the National Institutes of health. However, estimates of the number of people in the
Even if you averaged those numbers, that number is still much larger than that of many other more well known diseases that get alot more funding for research :(
So, Why does it occur? What pre-disposes some people to developing it, and not others? And why is it so hard to diagnose and even harder to effectively treat?
Right now, there are more questions than there are answers. RSD is a complex, mysterious and very confusing disease. It is incredibly hard to understand, for both regular people and medical professionals alike. But I have great faith that the doctors on the frontlines of RSD research and treatment are getting closer to those answers.
I am living proof that even an extremely severe case can be reversed and put into remission with the right doctor and aggressive treatment plan. The hands of Dr. Cantu and his wisdom in the use of ketamine treatments saved and restored my life, and I have no doubt similar treatment would be very beneficial to others with RSD, but like any treatment in medicine, though for me, the ketamine has been miraculous, it doesn't work for everyone,
Hitting my foot recently was a wake up call for me and now I live very aware of the fact that any wrong move, injury or sickness can still cause a set-back. Even though I am 1,000 times better, There is still no cure... And that needs to change!
We need more research, better access totreatments, insurance to actually cover those treatments and most importantly, an increase in understanding.
With that said, Last week I had the amazing opportunity to listen to an incredible man speak. His name is Nick Vujicic and he was born with NO arms or legs!!!
Just when you think *you* have had a rough time in life, God has way to send you a message of just how truly blessed you really are.
If you don't already know of his inspirational story, definitely check it out- www.lifewithoutlimbs.org
Nick spoke for 2 hours about God's plan for each life and about never giving up, because if you do, you will never see what God could do in your life and you limit his power to shine through your brokenpieces.
It was very emotional to hear, and reminded me in great detail of the darkest times of my illness where I was very ready to give up, if I had been able to. (Shoutout to mom for keeping me alive!)
RSD is called the 'suicide disease' by many doctors because of the high rate of it in patients dealing with this extreme pain. It's really not something you can deal with in your own human strength.
I would like to give anyone in pain the same advice that Nick signed to me (using his mouth!!) in his book, "LifeWithout Limits"-
"Your pain IS bigger than you and your pain IS bigger than your attitude... But your pain is NOT bigger than God! Trust Him to carry you, and one step at a time, He will. Don't give up!"
I think when I was in the middle of my worst pain that advice would have probably been the last thing I wanted to hear. But we are limited in what we can see...
I know if I could have seen back then in those dark moments how well I am doing now and how much I now love my life, it would have probably made some things a lot easier!
It get's better!
We don't see the future, but God does.
I am blessed and so grateful to be feeling so well and enjoying my life fully, but when I hear stories of others not doing well, I feel very guilty.
I won't even pretend to understand why God allows a disease like RSD/CRPS to exist.
My hope and my prayer is for answers, for all of us who are dealing with this illness and for the doctors who are working so hard on our behalf to relieve our suffering and lead us back to better, less-painful lives.
If I can come back from how bad I was, it gives me so much hope that everyone else can too....I would never say that unless I believed it 100%.
Thank you to everyone who has helped me to gain my freedom from the pain of RSD! Please continue to pray for all of those who are still suffering and for a cure to be found, soon!
Also please remember in your prayers all who have been affected by Hurricane Sandy, especially my family and friends in my hometown of Garden City, NY! Possessions are replaceable; homes can be rebuilt and fixed... I am just so thankful to God that all who we love are safe! Hopefully they will have their electricity restored soon too!
**To post a comment, click on "comments" below**