Aimée José is a CDE (certified diabetes educator) and PWD (person with diabetes) herself, living and working in Palo Alto, CA. I was thrilled to learn about her work researching the most effective use of CGM (Continuous Glucose Monitoring) not long ago.
As one of us, Aimée understands our lives and challenges far better than most healthcare professionals. That's why we've invited her to provide a window into her world...
A Guest Post by Aimée José
OK, I admit it. I’m selfish. I selfishly work in the field of diabetes to better myself…through all of you. I gain knowledge from you every day that is not taught in a class or textbook. I learn new uses of standard therapies and see exactly how products work in real time… not just by reading a manual or published research. I’m exposed to rare and unusual outcomes and know how to avoid adverse events because of you. I do this to better myself. But mostly I do this to share. I selfishly take your knowledge and spread it so we are all smarter, more aware and safer.
I am passionate, I am an advocate, I am often a skeptic, but mostly I am a believer. I believe that with knowledge, a spark of curiosity, and the ability to be resourceful we can all be more empowered to proactively care for ourselves.
My name is Aimée José and I was diagnosed with T1DM in May 1983; just 2 short weeks before my 13th birthday. I went through a pretty normal childhood and was a pretty normal kid despite my diabetes…I think. I actually believe my brother (not me) was the one dealt a rotten hand of cards. He lives with so many undiagnosed disabilities, so many questions, so much confusion, and too much awareness of his challenges & differences. Me, my pancreas doesn’t work quite right, so what. I’m not perfect, but nobody is. This is how I viewed my life as a kid (and still as a kid at heart) growing up in a, well, colorful family. Seriously, I am so thankful to have been blessed with hearty genetics that allow me to have a brain that functions at (almost) full capacity and still be physically strong.
Now, anyone who’s been exposed to me knows I’ve always been very vocal. Sometimes this gets me into trouble, but I actually believe this is a blessing. I rarely hold my feelings in so they do not fester and stress me out. From a young age, whatever I felt, you saw or heard, as evidenced by the hole in my bedroom wall from slamming the door with my anger at its peak during a memorable meltdown after my T1 diagnosis. As a kid, I never tried to hide my situation, I was never embarrassed by it, and I never rebelled against it. It was just part of me. I did not strive for perfection (ever). I did the best I could with what I had. But mostly, I tried to prove everyone wrong, and my pediatrician was on my side the entire way. I could never tolerate hearing people pity me or treat me in any special way. I think my parents instilled this in me as we never treated my brother differently or as needing special attention. All I wanted to do was crush every stereotype about diabetes. I started right away and continue to do so every day.
Fast forward 25 years. My husband takes a job in Las Vegas. We pack up the Subaru, the dog, the 1 year old and drive to the desert for a life change. I become pregnant with our second child in the summer and decide I MUST figure out a way to help others with diabetes. I still cannot stand to see people’s reaction when they learn I have T1 diabetes. I need to find a soapbox to express myself to the masses! I enroll in the RN program at UNLV with high hopes of becoming a Diabetes Educator. I’m on my way to fulfilling my dream, but I am pregnant. Yippee, yahoo! Not really; being a pregnant, overage college student in the summer, in a desert… dumb, dumb, dumb. Let’s just say hormones, heat and stress are not a good mix. Though somehow I made it through. I went back to school to do one thing, and only one thing. I refused to go the traditional nursing path of working in a hospital environment. I wanted to enter a specialty field straight from school. I had lots of doors shut in my face but thankfully, someone saw enough passion and smarts in me to give me a chance. That said, I was well supervised and unable to harm anyone!
After 8 long years in Las Vegas, we returned to California. I continue my work as a Diabetes Educator. I work with amazingly open-minded professionals who understand my passion and patient advocacy. I am the only educator at my clinic who lives with this disease. I like to think I have a unique perspective and listen for cues differently than other educators. It is not that I see myself as better than my colleagues (I am the first to admit there is so much more to learn), but that I hear stories in different ways. And, as much of a skeptic as I am, I believe what patients are sharing is true (in their own way). Often patients need help expressing their issues. I’ve learned how to become a really good detective using my own experiences to uncover the root of most issues.
But my professional life is not without its challenges. The most frustrating part of my daily work is not the patients. I have to believe that if people are paying for my help, what they are saying is true and real to them. What is most frustrating to me on a daily basis is inaccessibility to data. The number of barriers to obtaining data is mind-blowing.
Barriers, roadblocks, red tape, and patient rights. They each have a separate set of hurdles to jump. Every day I have to be as creative as possible when determining how to access patient data from their unique set of diabetes devices. I make an effort to work remotely with patients as much as possible, because I believe diabetes does not require an office visit all the time. I am hopeful there will be better solutions to data access thanks to initiatives such as Glooko and Tidepool. Right now accessing data is like getting a room full of 2-year-olds to play nicely in a sand box. Each has their own personalities, each has their own issues, each wants it just their way and no one is listening to anyone!
The other bee that is stuck in my bonnet is how quickly other health care providers are to say “No” when offered new ideas and methods. We work in an environment that is so fearful of “potentially doing wrong,” that we often lose site of how to make simple and small changes that will benefit patients and even ourselves. Just because something has been done a certain way for years, does not mean it cannot be improved upon.
For example, if given the choice (money is no object in this scenario) why would anyone start a insulin pump before starting a continuous glucose monitor (CGM)? Oh yeah, I forgot, because pumps have been around for so much longer than CGM, people do not even consider the benefits of using data to better dose medicine…crazy! This is such a simple concept with huge impacts on both the patient and the provider. I have been conducting research on the topic in an effort to demonstrate the efficiencies of this method. Preliminary results were shared at this year’s ADA conference in Boston.
(Infographic from Aimee's previous CGM research)
Presented in the form of an ADA Late-Breaking Research Poster, our study looks at the impact of starting continuous glucose monitoring (CGM) prior to insulin pump therapy -- which to date has not been well studied, and only a small percentage of practitioners utilize this method.
We conducted a retrospective analysis of 20 patients using both CGM and insulin pump therapy to compare outcomes at the Palo Alto Medical Foundation in 2015. The two groups were: patients who initiated CGM before pump therapy, and those who did the opposite.
We hypothesized that initiation of CGM prior to starting an insulin pump would streamline the process of pump optimization and post-initiation follow-up by reducing the burden for both patient and healthcare provider. In fact, our results suggest that use of CGM prior to initiation of insulin pump therapy may lead to greater glycemic improvement and increased acceptance of new therapies. Pretty interesting stuff.
In short, my view on living with and working in diabetes is this: Life is complex. Diabetes is unpredictable at best. There is no need to complicate life further. Keep it simple, don’t overthink, move on, and most importantly -- Enjoy Life!
Thank you for your hard work and especially your great down-to-earth perspective, Aimee!