Danger! Think this- not that.

Do you remember me telling you about the IDF CONFERENCE in June?  The story hasn’t ended. I had not flown for 2 years due to a serious autonomic event in Atlanta airport.  But I was so excited to go to IDF and hear the sessions, see my friends, meet new Zebras- that I overrode my worry.  It’s a long flight from Minneapolis to Anaheim- even longer when the flight is delayed for 2 hrs.  Seating was tight.  It was hard to move around.  When we landed, I started walking off the plane and my knee really hurt ( I attributed this to the fact that I have dislocated kneecaps from RA). By the time I got to hotel, I was walking with a very decided limp.  It was not just my knee – but my entire right leg.  It looked like this:

I limped over to the conference and sat down quite a bit more than I normally would.  That night, my leg was warm, swollen, red and hurt like the dickens.  I slept with it elevated.  Next day- same story.  Next day- repeat.  Then, fly home and gosh darn- did it hurt.  Still assuming it was either RA, OA, I went to my PT.  Nope he said -not your joints.

I just happened to have an appt with my melanoma doc the following day.  Yep- lymphatic obstruction from your melanoma surgery.  HUH?  7 years later? Yep, now wear these funny looking compression stockings.

Sent my monthly recap of issues to my Mayo rheumy- mentioned my leg.  OH NO he said – get an ultrasound of your leg ASAP- it might be a DVT!  HUH I said?  ME?

So, off I went yesterday for this


Who would think of a NON-ZEBRA thing?  I sure didn’t.  I’m so used to it being Zebra, autoimmune or skeletal.  I HAD A NORMAL ISSUE and I wasn’t prepared for that!

I have a team of incredible doctors.  They take excellent care of me.  But sometimes- a patient has to use their noggin.

I did not have a DVT and my melanoma doc was correct.

I have to learn to treat this lymphatic issue.

I can’t always have my team with me.

However, I don’t think I ever want to fly again after this. 

How do you handle everyday, normal people things? Do you always suspect Zebra symptoms first? Maybe we need a little mind retraining!


I’d like to hear your ideas please?




  • Randi RodmN Posted July 22, 2017 2:49 pm

    Lymphatic massage and compression stockings- yes. BBy aspirin daily to prevent DVY???? Xo

    • mm
      Carol Miletti Posted July 23, 2017 3:43 pm

      I’m allergic to aspirin

    • mm
      Carol Miletti Posted August 11, 2017 12:51 am

      Wondering how you do lymphatic massage?

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