The hard cold facts about this disease is that were going to suffer and we all die. It is just how you wish to go out. Suffering to what extent and for how long is only between you and your higher power. I have met my maker twice with this disease and been paddled back. I am now at a place in life and okay for my god to take me at any time. It’s not that I want to do die, I have just come to peace with it. I wake up every morning praying to let me be the best mother, wife, daughter, sister, and friend. I push myself to ride the motorcycle, dance, do yoga, and always be there for my children. I try to carry a loving attitude to everyone that shall cross my path. I always smile, it will relax the people around you. I push through my days. Praying all day long and making sure I tell everyone around me I love them, hug them, and kiss them. I’ve been told I wear a poker face, it’s to hide what really going on with me. To the outside world nothing is wrong with me at first glance. Get close enough and I am trembling with pain. The muscle spasm and electrical pain are unconscionable. Bones that feel like they have broken and popped through my skin. Some days it’s too much but looking into my children’s faces some how make it all worth the torture that I am ravished with, with having the full body RSD type II.
A week ago, I thought I was having a heart attack. No matter, the doctor did the EKG and then said it’s just pain. The doctor did not want to help me but later gave in. Only with help of my medical advocate. I do highly suggest making sure you have someone who knows the medical field to help you with this fight. I was sent home with nothing but smallest dose of another drug that doesn’t help that well. Don’t forget your doctor is GOD when you are still earth-bound. I have had the humbling experience not to consider them GOD. Now I am stuck in a limbo of not having a pain doctor or should I call it “Purgatory“. Please don’t make this mistake. I am on the lowest pain medication right now fighting my way back into being on more drugs. I have made the mistake of pulling myself off all medication and just trying to fight on my own. It has become too much to handle and my quality of life went down greatly. I would rather be on medication that destroys my body than deal with this amount of pain. I live now in a state that the doctors are very closely monitored. I have thought about moving back to Colorado but my children and husband are very happy here. I have also grown to love this state but not the Doctors. I believe that through all my research and being the lab rat that ketamine is the answer until they can find the cure. Love, Smile, and just be grateful for what you have no matter how hard it gets. Make your peace and just try to put on foot in front of the other..
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