Thursday, July 20, 2006

An Open Letter to George W. Bush - And a Plea

I cried today. I know that in YOUR grand scheme of things, that probably doesn't matter. Lots of people cry. Because they're sick or impoverished or frustrated or sad or angry or all of those things. But I thought you ought to know that I cried today.

I just can't understand how you could have used the power of veto for the first time to overturn legislation that provided a glimmer of hope and optimism for people, like me, who live with chronic or terminal illness.

I understand that your veto doesn't "ban" important research, but it certainly impedes it. Federal funding would dramatically change the scope of research around diabetes and other diseases, and would widen the circle of scientists involved and accelerate the rate at which a cure might be found.

I need that cure. I've lived for nearly 25 years with a disease that has the potential to kill me. Frankly, I can live with the ten daily bloodsugar tests, with a pump that keeps me alive strapped to my hip, with the other medications that help me keep my disease controlled. But I'm struggling with all of the rest. I live every single day with the fear of losing my eyesight or the sensation in my hands and feet, I live with the prospect of pain caused by nerve damage and the knowledge that someday my kidneys just might fail. I am more likely than other women to die at an early age from a heart attack or a stroke. It is the looming presence of these complications that frustrate and frighten me most.

I am baffled at how you can call yourself pro-life. You chose to simply ban federal funding for stem cell research, rather than consider a compromise. You chose to let hundreds of thousands of embryos be discarded rather than used to help people like me live a better, fuller life. What you've done isn't moral, it's narrow-minded and it's wasteful. And I have to live with your decision.

As you know, hundreds of labs across the country - including medical research powerhouses like Harvard and MIT - receieve federal funds. What if the cure for diabetes could have come from stem cell research in one of those labs? Further, labs receiving federal funding share their findings and review one another's conclusions - which is not the case with the few private labs that can fund their own research. What if scientists sharing their work with stem cells could have cured diabetes? Certainly, with federal funds behind this research, treatments - cures - could have come sooner.

If you'd not used the veto power, government officials could have chosen to regulate how embryos would be cultivated, handled and ultimately destroyed. But you chose, instead, to simply squash the hope that stem cell research hold for billions of people. I'm not sure how you sleep at night.

Today, at a fertility clinics across the United States, there are embryos being flushed down metal sink drains, thawed and left to expire, and dropped into medical waste bins to be brought to a local hospital and incinerated. They are being discarded - along with my hope for a cure in my lifetime - along with the hope of billions for an end to their suffering, their frustration, their dying.

I cried today, because I know that roadblocks have been built on the paths to cures - I cried because I am tired of living with fear - I cried for myself and for my friend A, who uses a wheelchair in her fight against muscular distrophy, and my grandparents who died from complications of diabetes, and my grandfather-in-law who lives his life confused and broken, in a nursing home for people with alzheimers. I cried for all of the wasted life, literally being flushed down the drain, and the potential for relief that slips away with that life.

I hope you can live with this decision.

I am sending this letter today. I am copying my Senators with a thank you for their support of the legislation - and my representatives for their efforts to override the veto. I would encourage others to do same.

Clearly, the letter I sent to the Whitehouse prior to the decision had no effect. And even though the decision is made, I think it's important for us to make a statement about responsiblity. A statement about what we think about the decision and why.

See more thoughts from Kerri, Art-Sweet, Shannon, and Kassie re: the veto.

Monday, July 10, 2006

It's working - and it's not.

A quick update regarding the Symlin Experience.

I have lost 8 lbs in just over a week. Too fast a weight loss, I think - and one strictly related to the fact that this stuff totally decreases appetite. I am lucky if I can eat the two meals a day at which I take the Symlin. I fit in fewer than 1,000 calories - and I'm not hungry at all. So, the losing weight part is working, for sure. But, it's got me thinking; do I really want to be on another medication indefinitely? I don't know. I need to talk this through with nurse at my next visit (next Monday, which happens to be my 33rd Birthday.)

My insulin sensitivity has been increased all-around. I have gone from taking between 30 and 45 units per day to taking between 20 and 30 units - more often than not, the intake is in the low 20s, where it was typically in the high low 40s before Symlin. OK news, I think. At mealtimes with Symlin, my insulin to carb ratio is at 1 to 45 or 1 to 60, at mealtimes without Symlin (which, because of the aforementioned decrease in appetite, are rare) my insulin to carb ration is at 1 to 40. My basals have decreased at all times of the day.

But, the adjustment continues. I have had more sugars over 200 and more under 50 than I'd like to be having and I've had to call the doctor at least once everyday. And, because I'm letting the doctor take the wheel - following instructions and only giving my opinion if I feel like he's got it totally wrong - I'm feeling a bit helpless sometimes. It seems like we've got the morning under pretty good control... (Ie, yesterday: 118 before breakfast, 121 one hour after, 130 two hours after, 128 three hours after - today: 128 before breakfast, 121 one hour after, 116 two hours after...) than the afternoon has to come; I've been shooting up into the 160s-250s after lunch and not coming down -- only to swoop into the 50s before dinner, swoop up again after dinner and than plummet in the later evening hours... Yikes.

So, it's working - and it's not working. I'm still feeling slightly overwhelmed.

On a side note - I didn't write anything about last weekend, because I pretty much took the weekend off. With the wedding and the driving and the memorial service... I just couldn't deal with another variable... I have started a post, to fill you all in on how the offtime went (not great) - but it's slow in coming and work is busy...

More to come.