A Riff on the Mayo Medical Mystery tour

I was going to talk about SIBO today, but after spending 3 days at Mayo – I have quite a few thoughts swimming  in my head.

I live about 120 miles from the Mayo in Minnesota.  I’m lucky.  That is where I went when I had Valley Fever (coccidiodiomycosis) for a full year and could not get better.  That is how I learned I had PI.  If you are heading to Mayo- hope you have enough energy to get around – because it is BIG!  And this is only part of it!

My trip was full of better news than last visit as my autoimmune flare is starting to settle down.  But it also had some what the heck moments.  My ankle bones were the last remaining joints that had been spared – no longer the case.  I now have ‘cankles’ due to the inflammation of the ankle joint.  I have severe tendonitis with synovitis in my right arm and hand ( which I knew because lifting my coffee cup had become painful). Getting fitted for a brace tomorrow.

I’ve developed lymphedema on my right lower leg where I had melanoma surgery several years ago.  It started when I flew to the IDF Conference.  I had no idea this could show up YEARS later!

But the really odd test was a vocal test because I’ve had some difficulty with voice, singing, swallowing.  My rheumy thought the tiny bone in my throat might be inflamed.  So I saw a voice specialist and had tests done that I didn’t even know existed. I HAVE ISSUES😄  Vocal spasms!  Vocal chord issues too.  They scoped me and had me go hmmmm and ahhhh and ohhh.  Without going into technical details – I won’t be singing along with The Eagles at the top of my lungs while driving anymore.  She suggested I stick with Sinatra.

BOY- KNOCK ME OVER WITH A FEATHER- I did not even know this was a thing!  DID YOU??

On my way home – I was looking for the light.

1) my 5 month tummy infection has lead to a 15 lb+ weight loss

2) I can’t sing with The Eagles – but I flunked out of choir because my voice is pretty lousy! So no big loss.

3) I’m alive!  And the sun is out!  I called my Mom ( who is in the happy stage of dementia) and told her how LUCKY we are because we are ALIVE and my Dad and sister never were this fortunate.  They did not even make it to my current age.

Remember – no matter how crummy you feel – you are here!  You are part of the living.  Not everyone gets that chance.


How do you make lemonade out of lemons?

What do you do to feel better after a hard day/week/month?

I think I will go to the gym after I get fitted for my brace tomorrow and see what I can do.  Working my body makes me feel normal.




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