ALS April 14th


Its been a couple of days since I posted anything. Susie has been sick with what sounds like bronchitis, and has been feeling miserable, so we have just hung around the hotel room and tried to relaxed. Yesterday I had my final MRI, it lasted about 2 an a half hours. This means remaining immobile while they scanned my body, since I have spent years in front of a television not moving this was the easiest part of all my weeklong procedures.

I will share the wrestling match I had with my insurance company getting approval for the MRI, it’s not every interesting, but it is therapy for me. It started off with the best minds in neurology at the Mayo Clinic saying that I need an MRI. It then goes to my insurance company, they stated that I needed to get approval from them before they were going to pay, and actually they were not going to decide they prefer to farm this work out to a third party, and a nurse in a cubicle or a doctor in an adjoining cubicle look over they request and are the final authority if you will get this test or not. Oh and by the way, we are going to take our sweet time about it because even though this is a life threatening condition and has been tormenting you and your wife for months we don’t care. We are going to treat you with no more compassion than the DMV and read verbatim from the customer service manual that was written by an accountant. We are going to say things like, “We have 24 hours to review your case before we make a decision” or “There are lots of other people ahead of you.” or “You will need to get your Doctor to call us.” and my favorite robotic-mind fucking-souless-babble “Is there anything else I can help you with today.”

Yes there is, I pray that one day you are sitting on the phone with my condition, and someone like you is sitting on the other end of the phone reciting the same exact words you are saying to me. I think that is the only way you would have any understanding of how helpless, powerless and frustrating this medical system can make you feel at times.

The system is so broken I am calling it the Humpty Dumpty experience.

On the bright side the Mayo Clinic is awesome, the people are wonderful, kind and caring. It has been an outstanding experience and I cannot say enough good things about them. I am grateful to be living so close that Susie and I can drive and that we live so close to the KU Med.

Susie and I meet with the Neurologist this afternoon and he will be going over all the tests and sharing his findings and final thoughts. I will update you tomorrow once we get back into Kansas City.

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