Thursday, June 3, 2010

Thoughts on the Cure

I enjoyed the group blog week that I participated in last month.  I had no idea that there were so many people writing about their experiences with diabetes. It was interesting reading and there are several that I will be following more closely.  Of course, the topic that interested me the most was the last day's in which we all wrote about how life would be after the cure.

There was a variety of responses ranging from no hope to plans to celebrate.  I started looking at them at random and then became so interested that I decided to read them all.  Then I decided to start taking some notes and consolidating the responses. Over 80 people responded.  These are the most common phrases:

Plans for a celebration 16
It would feel like a dream 10
It will not happen in my lifetime 7
I would appreciate the freedoms I would have 7
I believe it will happen 6
I would be so thankful 5
I have hope that it will happen 5
I will just live with having diabetes 5
There are parts of being diabetic that I would miss 5
I would enjoy not having these worries 5
If only it would happen 4
I would be so relieved 4
I can't even imagine a cure 3
I don't know 2
I would love to feel normal
I would love to be able to think of something else 
I would jump at the chance
It hurts to wish for it
And my favorite from Typical type 1 from a mouse's perspective.

My perspective is so different now.  Before my transplant, I couldn't even let my mind go all of the way there.  It seemed like too much and too impossible of a wish.  I guess I would have related to "It hurts to wish for it" the most.  Even during the screening process for the clinical trial, it felt like such a long shot.  Something that only happens to other people.  Thats why I applied to four sites, to increase my odds.

Now I feel that this is almost like a dream.  I have so many new freedoms.  I am so thankful to those who have made this possible....... and on and on through most of the other phrases above.  Even including the one about missing parts of being diabetic.  It's an eerie feeling to be living my old dreams and those of so many others.  I have very mixed emotions about it.  I feel very lucky and even a little guilty because its something that I can't share.  My identity is somewhat in limbo.  Its hard to decide which is the real me; the diabetic me or the no longer diabetic me.  Reading all of these thoughts that were written by people that I really respect  makes me feel so strongly that a cure has to be available to everyone.  And soon.

My next project is to organize some of the articles I've been reading and saving pertaining to the cure.  There are some really exciting projects happening now. They all seem to be so promising.   One of the things I like about working on this blog is thinking about how I will look back on some of these things that I have written in the years to come.  This post will arouse some feelings I know.  And it will be interesting to see if I was right about which research front will be the first to arrive.

I'm still feeling really good.  My blood sugars have stabilized.  They aren't as good as when I was on the Cellcept, but they're ok.  If they stay where they are, I'll be very happy.  My fastings range from about 80-120 and my post-prandials range from about 100-180.  Dr. Bellin increased my Rapamune from 5 to 6mg/day.  That seems to be helping, although I'm not really sure why.


Anonymous said...

Thanks for the shout out! I will say that reading your blog (I've stalked for a while) HAS given me hope, and I'm glad you're giving us all a first-hand perspective on how things are on the transplant side.

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