Thursday, November 29, 2012

Joslin Blog Project: Moving Forward... I WANT IT ALL.

I can't believe that this is the last week for the Joslin Blog Project! It's been a great experience and it's been a way for all of us, (those writing the posts and those reading them)  to help others living with diabetes. This week is all about Moving Forward. We were asked write about diabetes technologies that have helped us live better lives and how. And how those technologies could be improved.

Honestly, I don't know what I would do without my insulin pump and glucose meter because both have changed my life for the better. 
Being able to test my blood sugars whenever and wherever I want has not only given me better control of my diabetes - It’s given me a better life with diabetes. 
Glucose meters act as our bodies GPS system, mapping out where our blood sugar is currently and where it needs to go. And all in under 5 seconds.  Come to think of it, so do CGMs - more on that later. 

I remember when glucose meters first came out they took 3 minutes and were the size of a VHS tape. Now a days I can be out with friends and nobody will even realize I’m checking my blood sugar. 
I remember the days before there were glucose meters. I remember testing my urine and burning my little fingers on the fizzy, urine filled test-tube. Not only was it disgusting, it was damn inaccurate. I refer to that time in my life as The Diabetes Dark Ages - And I never want to go back there again. 

Going on the insulin pump was a huge game changer in my life with diabetes. 
I was in good control before I went on the insulin pump. Seriously, my a1c was in the 6‘s, but I was injecting for every 15 grams of carbs I consumed, sometimes 6 times a day just for meals and or corrections, plus the nightly lantus injection in my arm.
I was literally and figuratively running out of real-estate when it came to injection sites. My stomach looked a Patone Color Chart that was permanently flipping between the purple/bluish and the greens and yellows. NOT SO PRETTY. 
At the time I was working out a lot and was really having a problem with low blood sugars almost daily.
MY older sister had tried for years to get me on the pump, but her delivery was less than pleasant and I refused. 
Finally, Dr. J (my awesome Endo) told me that he really wanted me to try the pump because my stomach needed a chance to rest. And if I didn’t like the pump, I could go off it in a year and that he wouldn’t be mad at me if I chose to go back to shots. 
That was 10 years ago and I’ve never looked back. 
IP therapy is more work, but it’s given me so much more freedom and I love it. 
The insulin pump has allowed me to choose when I want to eat,a meal,  not when I have to eat a meal. 
Being tethered can get annoying, especially as far as doorknobs are concerned, but I’ll never go back to shots!

I wear my electronic pancreas clipped to my hip and close to my heart.

CGM: I don't currently wear a continuous glucose monitor, yet, but I'm working on it!
My insurance company is very CGM friendly & it's a on going battle I'm in with them. 
But it's my hope to have one in the very near future. Actually it's my hope for everyone to have CGM in their future, because being able to track your blood sugar and actually see what direction it's going (arrows up verses arrows down)not only helps to prevent dangerous lows and highs, it gives the person wearing the CGM (and their family members) peace of mind.

BUT I WANT MORE from these live saving devices. 
In the immortal words of Freddie Mercury: I WANT IT ALL, I WANT IT ALL, I WANT IT ALL, AND I WANT IT NOW. 
I want my diabetes technology to be spot on. The whole meters being 10 to 20% of the mark has got stop. If my car was 10% to 20% inaccurate It would barely drive. If my (or anyones for that matter) oral meds were 10 to 20% inaccurate there’s a good chance I’d be dead. 

I want all my diabetes devices to talk with one another and work together - seamlessly.
I would love for my pump to stop insulin delivery when my cgm ( don’t have on yet) tells it that my blood sugar is low. 
I would love for my insulin pump to let me know when I’ve hit a “dead spot” that isn’t absorbing insulin, instead of having to find that out on my own - Usually 3 or 4 hours after I’ve put in a new infusion site and am blowing a 340 blood sugar. 

And I want insulin pumps to be smaller, thinner, sleeker and sans tubing -  And I want the latest and greatest in pump technology - Like they have in Europe. 

In order for all of the above to happen, the FDA needs to move faster when it comes to approving diabetes technology because our lives literally depend on it!
I want insurance companies to get a clue when it comes to diabetes technology and not be stuck 5 years behind the times. 
What good is approving a CGM (continuous glucose monitoring system) when the same insurance company that approved the CGM refuses to approve the sensors for said CGM. CGMs are nothing without the sensors! KNOW HOW THE ACTUALLY PRODUCTS WORK.
Speaking of glucose, I don’t want to have to continually argue as to why I need a certain number of test strips a month in order to maintain my good health. 
I don’t want to argue over what brands of insulin my insurance cover verses what brand of insulin I actually prefer to use. 
Quite frankly, I’d prefer to use Kelly Kunik insulin, but that’s not going to happen because I no longer have the ability to make insulin. But I digress. 
If I’ve been using an insulin pump for 10 years, why do I have to jump through hoops to get a new one? 

Bottom Line: Diabetes treatment relies heavily on technology.  And as people with living with diabetes we rely on technology to keep us healthy, to maintain a good quality of life - And to keep us alive. 
We not only need the best in diabetes technology, WE DESERVE IT- AND WE HAVE TO FIGHT FOR IT - UNTIL WE FIND THE CURE FOR DIABETES.

What diabetes technologies have changed your lives for the better - And how would you improve them in the future? 

***This is the last week of the Joslin Blog Project - Please help Joslin's High Hopes Fund


George said...

As much as I love my pump, i am all about my CGM. That thing is awesome.

We just need more accuracy and more safety and we want it NOW!!

Veruca Salt kind of NOW.


StephenS said...

Digging the 70s references I'm seeing here.

I agree that we need some speedup in how advanced technology gets to the patient, especially things that can really make a difference. Oh, heck... it all really makes a difference. I'm not expecting big changes right now (unfortunately), but I'm hopeful that soon years will turn into months and months will turn into weeks, if you know what I mean. Thanks