Wednesday, May 29, 2013

Hello Scottsdale

Well, here I am back for my annual visit to Mayo, but with a twist this time.  I am at the Scottsdale campus rather than in Rochester.  A number of events came together to bring me and my family here for a vacation, and since the Mayo Clinic Scottsdale Campus is only about 10 minutes from where we are staying, it made sense to have my check-up here instead of Minnesota this year.  I must say, it certainly feels different.  It is a fraction of the size of the Rochester facility, but there is still that safe and comforting feeling that comes with being at one of the greatest health care facilities in the world.

My hopes and expectations are not too high for my tests this year.  My neuropathy has progressed noticeably over the past year.  I guess that is fairly common with most amyloid patients post-transplant with a variant other than the Val Met 30 form of amyloid.  I just finished with one of the nerve tests, an EMG, where they give your nerves electric shocks of increasing strength to measure how sensation is registering up and down the nerve.  The shocks that once had my feet and legs kicking are now just minimal sensations that I can barely notice over the course of the exam.  I had an echocardiogram earlier to check heart involvement, and those results  should come back tomorrow.

I am awaiting one more test today, then I'll wrap things up tomorrow. I am in the patient library here at the Scottsdale Clinic.  In the Concourse behind me  is a pianist playing Amazing Grace.  That song always reminds me of my mom, and it has always comforted me.  I continue to battle the progression of this disease the best I can through exercise, naturopathic remedies and acupuncture, but I have certainly had to embrace the lesson of "acceptence" as this disease has progressed despite all of my efforts.  My faith and connection to Spirit remains unshaken, as I have to remind myself again and again that I am a spiritual being having a human experience.  That I am not my body, and despite its continuous decline, who I am has not changed.  It is sometimes hard to recognize myself in the mirror these days as I have become so thin and emaciated, but the essence of who I am remains untouched.  I remain hopeful that a cure for this disease is on the horizon, and until then try to get the most out of each day.  I had a wonderful trip to the Grand Canyon with Jeanine and Jake last Saturday, and Monday was able to play some golf with Sam at the TPC Stadium Course.  It has been a great week as we have enjoyed staying at the home of our friends Stan and Julie Picket here in Scottsdale.  Their generosity is incredible, and it has been a wonderful gift to me and my family to be able to have this time together.

Going to close for now.  I will miss not seeing my friends in Minnesota this year as well as the hospiotalioty of the Gift of Life House.  Hope this finds everyone out there doing well.  Rick   

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