Monday, November 28, 2011

Study's end

Everything felt a little off today.
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.
mary 11.28.2011


* explanation: Hey, I worked neuro for years too,
considering myself an expert nurse.
Only now,
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.

4 comments:

  1. Okay, maybe I'm being ridiculous, but put your explanation footnote to music and you'd have a hell of a song.

    Here's hoping the study's end will produce positive news for you.

    Judy

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  2. Thanks for stopping by, Judy! Hmmm...a new blues song? Yeah! have a great day! mary

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  3. arbMary. My very best to you. My "study's end" was yesterday also, but it wasn't a big deal. From my family background, I have an elevated risk of a certain disease and they studied many women with that risk for five years to figure out what factors were important or whatever. So my study was just blood tests every three months. I do not have the disease, but probably, some women in the study came down with it. Still, it felt weird for the study to end. A feeling of...you mean nobody's LOOKING out for me now?

    I hope your study shows you a great regime to go forward. Blessings.

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  4. Thanks Meredith, fellow mouse! I love research so we can help all those in the future. Have a great day! mary

    ReplyDelete

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