I was ready to end treatments prior to the infusions, after two rounds of cancer, dangerous spinal surgery with a displaced spinal cord, countless treatments and a cancer scare that lead to a right sided breast biopsy at the end of last year, had me ready to just stop. The last 7 years have been medically hard and the last five painful beyond imagination. RSD is horrible, add the rest and it’s a nightmare on earth.
I don’t believe many would have blamed me, three surgeries, radio frequency ablations. rectus sheath blocks, nerve blocks, botox injections, at least 10 consults for other opinions here and in Massachusetts, and countless hours of PT to say the least, just to function with basic daily needs, never mind have a life outside of home. Do you know how good it feels just to be able to get my hair washed? It’s the little things you take for granted you miss the most, the things that make you feel depended and not independent as you should be at my age.
They all went above and beyond to work with me and educate me so I would at least try the infusion therapy despite the FDA still calling it experimental. I believe that is to keep the insurance companies from having to cover the treatment, so it’s a complete out of pocket large expense. One can understand my concern over spending all that money for the for month of treatment and the 11 loading doses. My parents had given me money, my friends and even my son as well to ensure I had treatment. They where begging me to try it, I was terrified of what it would do to me and didn’t want to trade pain for living in a haze of medications, I was frighten. They all spent time with me out of empathy and true concern.
So I did it.
I don’t regret being sick through it and loosing two weeks of life in exchange for feeling better than I have in five years. I had a spasm last night it sucked, with the med changes my heart can get pissy. My rate was 145 with a declining SAT, BUT the pain was minimal! Some emergency meds, meditation, and oxygen an hour and a half later I had broken the spasm MYSELF AT HOME with Matt’s help!
It’s a huge win to me, to be able to get the core muscle that is herniated in my abdomen to stop spamming and allow me to breathe easier and get my respiratory and heart functions back to normal limits that I didn’t have to stay on the oxygen more than a couple hours total. No ER trip, no agonizing pain that makes you wish they would just knock you out cold, I could handle it and not be scared. I could handle it and know I was safe and the ER is there if needed, complete with a care plan to know how to help me if I am in acute spasm. Especially like last night when it takes my voice and I try but can’t get more than a squeaky teenage faint boy voice going through puberty lol. At least that is what we call it, it is more fun than being “horse”.
Above and beyond, my one life mattered. I wasn’t just a number or a name on the board. My life mattered enough for them to spend all the time in the world with me and for that I and my loved ones are forever thankful.