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Sometimes it feels like I have two jobs, the business of
running my medical care and of running my so-called freelance writing business. An example of this is how the other day played out, when I wanted to write but couldn't fit it in.
I am concerned that a spot on my wrist could be skin cancer. As per a nurse’s
instructions, I sent a photo of it to one of my dermatologists, Dr. Liu, on Patient Gateway, the Partners
portal, but the photo is useless because it rejects the larger size and when
you make it smaller, it is pixilated and therefore of no use.
Dr. Liu said she would look at it when I see her at the end
of July. I called her scheduler to see if there were any earlier openings and
she said there was a rare occurrence! An opening with Dr. Lin at 11:15
yesterday at 221 Longwood in Boston.
This led to a domino effect of canceling the occupational
therapy appointment I had for 2 p.m. I will have to do my hand exercises
because she measures my progress on opening up my hand more, specifically my
left one which was starting to look like a claw, due to tightening of the
fascia resulting from graft vs. host of the skin. The ECP is helping in other
areas by loosening up my skin but not in my hands.
Then on to calling in prescriptions. I just call the
pharmacy and speak to the recorded creepy voice except for one doctor who says
the automated refill requests go to
another office so I have to call to make sure she gets it.
Next it was time for visual field testing at the
ophthalmologist’s. This is nerve-wracking. You have to push a button every time
you see a flashing light. They are testing for possible glaucoma and loss of
peripheral vision. My mother had it so I’m at risk. I did it last year and was
OK. The technicians were cranky. I was tired.
“OPEN YOUR EYES WIDER!” they said. “DON’T LOOK TO THE SIDE,
JUST FOCUS ON THE DOT.” They did the right eye twice because the machine wasn’t
working the first time. By the time they got to the left eye I was so tired
that I wasn’t catching the dots.
I’m afraid that when I see the doctor, she’s going to tell
me that I failed on the left side.
I tried to change today’s ECP so I would not have to go
twice in one week. I didn’t get a return call or email. I’m going back for the
procedure today.
I’m having trouble getting Maddie into the car and might
have to get a dog ramp.
I took an extra gabapentin because I take less than the
therapeutic amount, due to the side effects. Nobody wants to take more but I
wanted to see if it helps the neuropathy because the CBD isn’t doing it. I’ve
heard I could take more CBD, but nobody knows. Before tennis on Monday, I took
an extra gabapentin and had one gummy that is 1 to 1, CBD to THC. It is just a
tiny bit of THC but it was bad for my tennis. My arm was wobbly and I wasn’t
making my usual net shots. I think I should stick to THC at night. In any case,
either I warmed up or the THC wore off, because by the third rotation I was
doing fine.
I guess I could have skipped tennis to get some writing
done, but as exercise is part of my health care routine, I wasn’t going to do
it. In summary I seemed to spend most of the day planning and scheduling and
rescheduling appointments, and not any time writing. It is necessary but not
satisfying. All I can say is we transplant recipients sure need a lot of
maintenance and sometimes it’s hard to get other things done, in general.
