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!
WHAT DO YOU THINK?
I’d like to hear your ideas please?