Go. Stop. Wait.
That’s my cycle, I think I might trademark it. Maybe I’ll make it my new middle name. Just a thought.
I have had an overwhelming amount of doctor’s appointments lately, but yet no new answers. My medical team proposed treating my MCAS with IVIG and ketamine infusions. I was excited to try something new, I always am as I patiently wait to see if it could be groundbreaking. But for one reason or another, the treatment plan fell through.
Go. Stop. Wait.
Then, one of my doctors decided I must have a cerebral spinal fluid (CSF) leak. After all, I have had positional, constant headaches for well over two years now. So, I trialed high doses of caffeine pills as a diagnostic tool. Caffeine is thought to increase cerebral spinal fluid production, therefore reducing headache severity in those with spinal fluid leaks. The caffeine slightly reduced my headache, but most importantly, it allowed me to sit up more throughout the day. I had a few, consecutive good days. I even went to the family room one night to watch a movie. It was so exciting to have a possible solution!
Yet, it was too good to be true. Despite taking the caffeine in the morning, it started to keep me up late into the night. On one occasion I didn’t fall asleep until roughly 6:30 am. The lack of sleep flared my symptoms, so we decided to drastically lower the caffeine. As of now, two of my doctors want me to get a blind blood patch. But as usual, no further steps have been taken yet to make this happen.
Go. Stop. Wait.
My mom has always had it in her head that there is something going on inside my body that is complicating my hEDS. As a result, she paid out of pocket for extensive testing through Vibrant America a few months ago. Our findings were many vitamin deficiencies, as we expected, and a positive marker for Lymes disease alternative criteria. We found this strange since I tested positive for the same criteria about a year and a half ago. The first round of results resulted in my doctors dismissing this issue. They said we “had bigger fish to fry” and should stay focused on the CCI. They assumed the test could be positive due to a certain food I had eaten. My family and I both agreed to move on, because after all, doctors know best, right?
However, the positive results of the second round of testing raised more eyebrows. I thought we might be onto something. The doctors said the treatment for Lyme disease would start with a strong antibiotic that crosses the blood-brain barrier. I was open to it. I always want to try, always.
But, months have gone by and no further steps have been taken for this treatment either.
Go. Stop. Wait.
I know I sound like a broken record but, I am tired of waiting. How can so much be going on behind the scenes but we don’t make any real progress to heal me? Why does my body reject so many avenues? When will things finally change?
They said time would help me, but it’s been so long now.
They said to rub my skin to desensitize my nervous system, so I do it daily, but nothing.
They said to keep working hard at physical therapy, so I try my hardest.
They say to keep the faith, so I pray.
Go. Stop. Wait.
