First my clinic appointment was today, on a Monday, not the usual Tues. or Wed.
Next, it is my last study appointment.
And I was wondering how I ever could control that and I cannot and never would be able to.
Next, my appointment is at noon, when everybody is going to lunch, but here they are, squeezing us all in
because we are all done w/ the study.
My MRI was not until 6 PM causing me to commute twice to the city.
(pardon, it may not be a city to you :>
Thankfully Fred took me to the MRI.
All morning me thinking they may have some breakthrough info re: the study.
After all the usual blood drawing, vital signs, physicals, tests, I said,
"Is that all there is?" I thought they would know more, help me decide
the concrete path, the format for success.
They would know a little more soon, the meds shouldn't cost me more than $35 a month with my insurance
(I think, give up what for that???) She said the meds are worth Thousands, (thousands??)
and I know she is right. My acceptance of all this shaky as is normal.
My Dr. offered to write letters to help me get the meds covered.
I want to call insurance today,
but i am waiting to see what the best regimen for me is.
I talked with one of my study nurses and describe how a good shot causes skin reactions.
I liked my meds fresh. She gave me that look...
Then I realized again the phenomenon I told some MS friends about.
I am on a different wavelength than these other people. (see * below)
She did say Dr. P (I miss him so) said the skin reaction was a good sign, the med was active.
Somehow, I knew his name was going to come up today. He was the doctor who recruited me for the study 4 years ago. Now he is gone and now the study is almost done. My last official visit today.
Still having a hard time accepting it all.
Then the elevator to the MRI place. I run into an ICU nurse I worked with.
"I am going to get magnetized", for lack of anything better to say.
In the hallway to MRI, giant murals of happy caring staff and short quotes of wisdom.
I stopped in front of Dr. P's. He is gone but here is his photo, his eyes true
his quote, deep. Fred tries to take a pic of it but it is too big of a picture to capture.
Just as well.
Just wanted to jot this down while fresh.
It was such a weird day and more questions remain.
How being off our game can mess with your whole being,
and how knowing and understanding can be different.
How an expectation, an anticipation, of something miraculous,
rarely ever bears fruit.
And I have made it through the study,
stay tuned for updates of the study results as they become available
to me, the mouse.
* explanation: Hey, I worked neuro for years too,
considering myself an expert nurse.
I can hear the wavelength transmission of the MonSter,
and it is ugly.
And those who do not know the MonSter,
cannot see it,
and therein lies a major problem.