Mayo is running a marathon while being shot in the foot.
Mayo is sunrise and sunset from a hospital window. Mayo is interrogation and re-explaining. Mayo is receiving a swarm of information whilst balancing open mindedness with personal intuition. Mayo is ten hour days of fighting for my body with vigor, tainted with the fear of being pathologized and unheard. Mayo is oatmeal three times a day. Mayo is unpredictable, intending to come for four days, and staying for weeks with too little underwear and two changes of clothes. Mayo is grueling cold and ridden with boredom.
Mayo is no stranger to pain and discomfort. Mayo is surrendering to unpleasant tests, procedures, needles, and physical exams. Mayo is surrendering to the recommendations of GI doctors, even against my better judgement in order to prove that I know what’s best for my own body. Mayo places heavy value on a psychological approach to rehabilitation. Mayo is great doctors, good doctors, bad doctors.
In three days, I have spent thirty hours in battle. Listening, learning, explaining, and arguing. So far, I have been thrown a a mixed bag of fantastic care, inferior care and all shades in between. There are two things I know with certainty: I will receive an incredibly thorough and detailed workup here, and there is no magic pill or surgery.
The reality has been reiterated to me over and over again that there is one way to improve the quality of my life: hard work. The lack of pharmaceutical and surgical options leaves me collecting dozens of physical therapy, pain rehabilitation, cognitive behavioral therapy and biofeedback pamphlets. I have been hit on the head with the importance of exercise one too many times. I’ve been told not to rest and not to nap, but to push through all of the debilitating discomfort, even on the worst days. The reality of this aggressive approach is overwhelming. The reality of how much time it is going to take to even see a slight improvement is overwhelming. I am being shoved off of a cliff with no wings.
Autonomic dysfunction is a unique and tough realm of disorders to be in. The protocol for improvement sounds extremely counterintuitive, although proven to be effective. Improvement takes an unusually large amount of work, and a tough love style approach. The next two weeks will consist of dozens of tests. I don’t know what is going to happen, but I do know it’s going to be hard work. After all, this isn’t supposed to be easy so I am ready to do whatever it takes.