While most dress down to go outside, I am dressing UP. Not with fancy clothes but with sun protection shirt, legging to my ankles, and, if I can find them, my sun protection gloves.
When I get to Dana-Farber for ECP, aka the light treatment aka the internal sunburn, today, the first thing that Ellen, the PA, will ask, is, "Did you play tennis today?" Maybe I won't see her, though, because since I now go an our later, at 4, she has often already left.
The long-sleeved shirt that I got from Coolibar is supposed to breathe, but it doesn't, so if anyone knows a good sun protection company or a specific shirt that is not so uncomfortable, please let me know.
As I wrote in my recent Healthline story describing my life with chronic symptoms, going back and forth to Boston is forever going to be a part of my life.
On my last visit two weeks ago, I enjoyed the luxury of having a friend take me.
It is not going to happen every time. I was grateful when, in the acute phase, people drove me. And I understand why it's not happening now when it's no longer a matter of life or death. It sucks up just about a whole day. If I could cope with all the medical drama, you would have thought I would have learned to cope with the driving drama. There's still time.
Today I have a double header, and two weeks from now, the same thing.
That will mean a lot of drivers. One today to Dana-Farber through MART (the source of most of the crazy drivers) , another, through The Ride, to Diane and David's, then The Ride again to my dermatology appointment tomorrow, then a different driver back home tomorrow.
The next time I go, the second part of the double header will be a checkup with Dr. Alyea.
I am not going to engage.
I have already packed my headphones and will just put them on and listen to something on my phone if any of them act up.
Stay tuned.
2 comments:
My God, 4 stem cell transplants! That's incredible. I recently located your blog and found many things interesting. I received my stem cell transplant in 2016 and celebrated my 1st birthday. I have many weird things happening but as you stated, you live w it. I say it's like Bits & Bites - every handful is different. I'm so glad to hear that you are playing tennis. I stopped before the transplant and hope to get to play this summer. My interest is why everyone is making a fuss w the sun. I loved the sun and now everyone makes me hide from it or lather up or dress up. Anyways, I appreciate your blog and will continue to read on!
2 peas in same pod!
Roman
Columbia has great sun protective clothing-hang in there -survivor of AML since 9/2013; and stem cell transplant 8/2014
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