November is national RSD Awareness month.
When left undiagnosed and untreated, intractable pain and other disabling symptoms occur, including extreme sensitivity to touch, lights and sounds, severe headaches, numbness, weakness, movement disorder, paralysis, ulcerative skin lesions, seizures and softening of the bones. In its later stages, RSD can lead to internal organ dysfunction and cardiac complications. Patients may become unable to digest food, maintain stable levels of blood pressure or regulate their body temperature. RSD can ultimately ravage the entire body and its organs.
On the medically accepted McGill Pain Scale, where zero equals no pain, and fifty equals the most intense pain, RSD is ranked as a 46/50-- making it the most painful disease known to medicine!
RSD is ranked higher than pain from a bone fracture (20), cancer (24), childbirth (32) and even above amputation (38)!
Imagine if every touch cut like a knife, every breeze felt like a blow torch and even a gentle hug caused you to feel as if you were being electrocuted, if every pain medication available to you was completely ineffective?
That is what RSD feels like. And it is horrific.
Well-meaning people have said over the years, "God only gives you what you can handle...He knew you were so strong!" ... That's a nice sentiment, but it's simply not true.
On all fronts, this battle has been sooo much bigger than me, far beyond what I could ever handle, way beyond my own strength....but it has never been bigger than God.
I am so thankful for the healing power of Jesus displayed through the wisdom and knowledge of Dr. Fernando Cantu & Dr. Luis Barrientos, who saved my life! I am so thankful for my family who fought by my side, and I am so grateful for the many prayers that sustained me.
Every day that I wake up without that pain and those symptoms, I still nearly cry from shock and happiness. :)
I am blessed to be in remission... but there is still NO CURE for this horrible disease. There are a lot of people still suffering, with no way out.
I also still live with uncertainties about the future... Will I ever walk again? Stay in remission? Live a long healthy life?
Those are questions bigger than me, but again, not too big for God. I believe with my entire being that the answer to my questions is 'yes', but no matter what the future holds, I will be okay, because I know I will have Jesus' strength in my weakness,
I want that feeling of joy I feel each morning to become a reality for all RSD sufferers.
So I am making this post as a reminder to please pray for them, that they will experience healing, peace and comfort. RSD is often called the "suicide disease", because so many patients lose hope, they don't see another option. They are tired of the pain. I lost my dear friend John this past year, and it is the most devastating and helpless feeling.
We need awareness. We need research into the causes/triggers for this disease, We need physicians to begin recognizing ketamine infusion therapy as the standard of care in treating this disease, and for insurance companies to cover the costs, but above all of that, we need a long lasting cure. That is my ultimate prayer.
Never lose hope...
"And nothing formed against me shall stand." (Isaiah 54:17)
To learn more, watch the following. Awareness is key! Thank you.