Tuesday, August 21, 2012

The Pits

Feeling stuck, I think, is even crappier than feeling like you're just having a bad time. 

Maybe it's like the difference between a nasty flu that lasts for a week and having a chronic illness. 

There's a lot that feels like it hasn't gone right for me all year this year, and let's face it, there's not THAT much left of 2012.  My current focus is to just get somewhere.  My home is so close to being back to normal after the bedbugs and the continuing aftermath.  I'm still seeing my therapist, trying to read more books, trying to take time to be mindful of everything.  Despite my best efforts, there are still many times I feel like I'm standing on one leg and a kickstand. 

I finally saw The Dark Knight Rises over the weekend.  (I'll try not to spoil much here.)  In part of the story, Bruce Wayne is taken to a terrible prison at the bottom of a pit.  The prisoners have the option to climb out and escape their prison, but every time someone tries, they fall.  No one ever makes it--they live out their lives in toil and despair at the bottom of this pit.  Of course, Bruce Wayne is the goddamn Batman, and he's determined to escape so his beloved city does not collapse at the hands of evildoers.  He trains through the agony of a broken back and makes multiple attempts to leave the pit.  What drives him to succeed?  Being the goddamn Batman.  Being the hero.  Being the one who can stand up for Gotham City.

There are times when I feel like I'm stuck in some pit of despair.  I could try to climb out, but that seems just as exhausting as being stuck at the bottom.  I think it's just my time to go for it, without the stupid rope.  Commissioner Gordon isn't necessarily looking for me up there, because I'm not a vigilante hero. 

But I'm an awesome person.  I am creative, intelligent, friendly, loving, and totally capable of all kinds of greatness.  There is nothing worse than knowing you are a rockstar but not believing it anymore. 

Do you have any tips for banishing negativity from your mind?  How do you get yourself out of a funk?  Once you start working on improving something about yourself, what's the best way to keep it up?

Monday, August 13, 2012

Should've Cured Me at Least Twice Now

So here's what's been on my mind this week:  The Cure.  (Not this one, either.)

I've had type 1 diabetes for just over 22 years now.  It seems that every person I know who has been touched by diabetes, patients and caregivers alike, heard one line as part of their diagnosis story.  That line is something like, "But it's possible there's a cure about ten years down the road."

Whether the person with diabetes is 16 or 65, it seems like we've all heard it so many times.  I'm here to make a confession today:  I'm cynical about it.

Today, I am 30-and-a-half, and in the past week, there was obviously a great press release from Dr. Denise Faustman's lab at Mass General, touting that the promise of Type 1 Reversal could lie within a generic vaccine for TB that has been around for years.  I saw the story run on multiple news outlets.  It gave me a glimmer of hope for a second, just like news of artificial pancreas research gives me momentary glimmers of hope.

Reuters News tried to take a balanced approach by stating that Dr. Faustman's research has at times been controversial, though this could be an important finding.  They quoted a doctor from Columbia University Medical Center who stated the findings may just be "a bit of magical thinking".  The story informs us that the generic TB vaccine only seemed to restore insulin production for a week in trial patients.

How am I supposed to believe there could be a cure in my lifetime if medical professionals don't see the validity in each others' research?

In fact, the Reuters story continues about Dr. Faustman and her project: "JDRF rejected her funding requests and circulated a 2003 letter from two of her colleagues at Harvard Medical School, casting doubt on her work and apologizing to diabetics for 'having their expectations cruelly raised' by stories about her research."

You know, haven't my expectations been "cruelly raised" for 22 years now?  Some people complain that we're living in the future and we still don't have flying cars, or we still haven't reduced our dependence on foreign oil, or President Obama hasn't magically waved his arms and created a job for every unemployed American.  I say, it's the future--and we still haven't cured type 1 diabetes!  (Or AIDS or HIV or cancer for that matter...)

What angers me about this news item about Dr. Faustman's lab and research is that this is a news story about science and research.  Aren't scientists supposed to keep testing their hypotheses?  If one scientist has some success in her hypothesis, shouldn't other scientists maybe try to refute or support one scientist's claims?  Just because Dr. Faustman didn't win the JDRF seal of approval is no reason for people to give up on research that has at least worked some of the time.

Even if the Faustman Lab research doesn't lead to a diabetes cure, what if it made something that made managing type 1 a lot easier?  I'm insulin resistant.  I've tried Symlin, and it's made me feel icky.  I tried Metformin with my insulin, it produced some rather unpleasant gastrointestinal side effects as well.  What if something from the TB vaccine could increase the effectiveness of my injected insulin?  There were no adverse side effects reported in the study, apparently.  I'd try that.

Even worse about the news from Dr. Faustman's lab is a view that made me relatively irate regarding the pharmaceutical industry.  Bloomberg reported that, "[Faustman] tried to interest every major drugmaker in developing the vaccine as a possible cure for diabetes. All told her there wasn’t enough money to be made in a cure that used an inexpensive, generically available vaccine".

If pharma wants to be as involved with the patient community as they would like to be, they need to keep the interests of actual patients in mind.   That sentence there basically tells the world that if there ain't money to be made by it, pharma doesn't want to cure you or even try to if they can't do it on their own ridiculously-priced dime.

What about the artificial pancreas projects and the closed loop systems?  Maybe it's better to be a med device manufacturer than a drugmaker in this case.

Either way, none of this news makes me feel better about ever getting a true cure.  Having a fancy cyborg system that checks my blood and acts like my pancreas with minimal supervision from me does sound pretty fantastic right about now, but is the day ever coming that we've all dreamed about when we were first diagnosed?

You know, the fateful day when we get cover-up tattoos for our "diabetic" medic alert tats, when we have a massive disposal party for all our diabetes supplies, when we can eat a cupcake and have our body provide a bolus instead of our fingers and some stuff from a vial.

Here's where I'm cynical.  Maybe this could be an unpopular opinion around the diabetes online community, but why bother to sugarcoat it?  (Ha ha, puns.)

How do we expect to ever be cured when medical professionals can merely argue over what is the best possible tract?  How do we expect research toward a cure to get done when pharmaceutical companies (who have all the major money out there) won't fund the trials that are necessary to prove efficacy?

How does pharma think they are going to earn the trust of empowered patients when news gets out that they won't help the very efforts many of us have been praying for since we were young?

Are we going to see a cure within the next ten years?  I'm not so sure about that, but I've been given a lot of reasons to feel disappointed.  Maybe if someone can prove otherwise, I'd feel a little more sunny on a diabetes-free outlook.

(Also, I'm curious, has anyone out there seen any research on how the Faustman lab is doing it wrong?  This is the internet, surely someone must have heard something...)


Wednesday, August 8, 2012

Wordless Wednesday: Post-Cedar Point Edition

The view from the bottom.


The view from the (almost) top.  That's Lake Erie.  Despite the heat, it was a gorgeous day.