It’s the 4th of July as I write this post and today I am grateful for the amazing friends I have in my life. The friends that are around the globe plus I am especially thankful for the close knit group of pals I have right here in the Twin Cities. Friends make life so much better and easier.
I was doing a six month Bullet Journal reflection and one of the things that came up in my thinking about the past six months is that I need more fun in my life. That looped me back to thinking about my friends. Sure, each of us can have fun by ourselves, and that said, in my life I’ve realized it’s more fun to have fun with friends.
I rarely drink alcohol, so I don’t go to bars. I don’t love going to music venues as too many people all jammed together causes my nervous system to get overwhelmed. Thankfully, I consider athletic activities fun and my circle of friends like to walk, run, bike, and swim together. While we do these activities we laugh and talk about life – the joys, absurdities and challenges. Nothing is off limits.
Going to the movies
Two of my friends, Monica and Woo, like to go to movies. In fact, they go almost every week. One random week they invited me to go along too. Turns out a movie every few weeks is often quite fun, especially with these two women! All of us wear masks.
Yesterday, Monica texted me asking if I wanted to go see the movie The Human Trial. I had indeed heard of this movie from all my Facebook friends who have type 1 diabetes. It’s getting quite the buzz. I said yes to Monica and we settled on a show time of 12:45pm on July 4th.
The Human Trial
If you have type 1 or you know someone with type 1 (you likely know me – so that’s everyone reading this blog post!) I highly recommend you go see this movie.
Here’s a compelling preview of the movie.
Grateful for friends
I was nervous going into the movie and I told Monica and Woo how grateful I was to not be watching this movie by myself. They reassured me they were glad to be seeing it alongside me. Both of them know me and many others who have type 1 diabetes. Afterall, here in the US there are more than 1.6 million people with type 1. It’s not as prevalent as type 2, and there are many misunderstandings about the types of diabetes.
In 5 years there will be a cure
One common joke in the type 1 community is that any moment, but for sure within five years, there will be a cure. I’ve had type 1 for 41 years and I was first told about this 5 year cure in 1981.
In short, so far the cure in five years is a myth.
Biotech effort to find a type 1 cure
What The Human Trial does is describe what one particular biotech company is attempting to do to find a cure for type 1. It tells the real story of two of the human people who agree to test the product that’s being developed. It’s not easy by any stretch to be a human guinea pig. Both of these people have lived with type 1 for quite a long time. They go into detail what it’s like to live day to day with this challenging disease.
They also humanize the researchers, who are not allowed to know who the people are who are their human trial candidates. The documentary filmmakers become the bridge between the two groups.
The documentary brought up many emotions in me. I felt a lot of grief, sadness and hopelessness. I also felt seen and a glimmer of hope. One of the human trial people, Gregg, grew up with a father who had type 1. Like me. The other human trial person, Maren, after the trial was over, she opted to have a pancreas transplant, since she had already successfully been taking the anti-rejection drugs. Her pancreas transplant failed. This reminded me of my father’s kidney transplant that was followed by a failed pancreas transplant. No two ways about it, living with type 1 diabetes is NOT easy.
In short, curing type 1 diabetes is a very long game. It might be 5 years, it might be never. I will still keep raising money for the American Diabetes Association and donating to friends who fundraise for JDRF. I donate where and when I can. I won’t give up hope.
I’m grateful for my long standing meditation practice, which reminds me to be with what is right now. Instead of being angry or frustrated or sad that a cure hasn’t been found, I breathe into what is.
At this moment, I have outstanding health insurance that pays for most of the cost of my insulin. I only pay a $20 copay for several bottles of it. My insurance covers most of the costs of my insulin pump, infusion sets and for my continuous glucose monitor. I make enough money to pay all my copays.
My pump communicates with my continuous glucose monitor and makes insulin adjustments based on how I’ve programmed it. I still make about 180 decisions in a 24 hour period about my diabetes, and thankfully I have a good brain that is able to make that many decisions in a day. For the past few years, my “time-in-range” on my continuous glucose monitor is between 70 – 85% of the time. That’s a good percent of time-in-range.
At this moment, I have excellent physical and mental health. I take good care of my body and that has generally paid off to my benefit. My eyes are in good shape, my kidneys are holding up well and I have virtually zero neuropathy. I have a wonderful therapist that I see on a regular basis and she helps me navigate my emotional wellness.
I breathe into this reality. I let go of wondering about a cure.
I give thanks for my amazing circle of friends who love me and care about me and who will go see a movie about curing type 1 diabetes with me.
If you have type 1, find this movie and go see it. Here’s the website. And, please keep up the hope and faith for ongoing well-being for all who have diabetes.
Thanks for reading and for being part of this community. I appreciate you taking a moment to read this post.
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6 thoughts on “The Human Trial and maintaining hope￼”
I appreciate hearing your thinking on the movie, the research efforts aiming to find a cure, and the journey to have more fun. I just recently agreed to a movie discussion group to get myself to sit down and watch a movie I’ve been interested in. I feel like it’s another way we are cut from the same cloth.
Hi Linda! I totally agree, we are indeed cut from the same cloth!! I love it that you are meeting with a discussion group about a movie you want to watch! Creating meaning and community wherever you go!
Deep and beautiful like you my friend. I expect no less.
And I love you my fellow cancer surviving sister right on back!! Very grateful for our many years survival and friendship!!!
Thanks Mari. I will try to find it, but the nearest googolplex that is likely to carry it is 1.5 hours away and $4.50 gas. I just switched to the Omnipod 5 with a Dexcom 6 as the CGM feedback. My endo PA said to try not to fiddle with it too much, let it do its thing. So far, it has not done much better than what I could do without the automated, feedback system. I find the Dexcom loses reliability in the last 3 days of the sensor’s life. No way it can work it’s magic when the Dexcom says I my BG is 50 and my finger stick meter says 250. I also just retired, so my schedule is not as hectic as it was when I was working. I don’t think it would have worked, as some days I might be sitting all day at work, and some I might have been called to a fire where I was walking with a 30 lbs. back for 8+ miles, not getting home until the wee hours of the morning.
I hold out hope for a cure but am certainly not banking on it. I support the Diabetes Research Institute whose sole purpose is to find a cure. They leave raising awareness and treatment research to ADA and JDRF. They are small, but laser focused. Like you, I run into smart people all the time who don’t understand the big differences between T1 and T2. Since 95% of Americans who have diabetes are T2, they just assume that is what everyone is T2, especially if you did not contract T1 as a child, which is my case. Frankly, I think T1 should be called something completely different.
Also, like you, my insurance has gotten better over the years. No cost at all for insulin. The pods and CGM sensors and transmitters are now a pharmacy benefit, with a total monthly cost of $90 in copays. No meeting deductible first, then paying 20%. Best of all, I can get everything from my local, independent pharmacy where everyone, even the co-op students, know my name. Before, I had to order them from a supplier across the country that had serious billing issues (they would mess up something at least once per year).
I hope you have a good rest of your summer.
Huge thanks for telling me more of your story. I appreciate getting to know you better. About the movie, check out their website and I believe they’ve offered a bunch of online events at low or no cost!!! So there are options.
I hope the rest of your summer goes awesomely well too!!! Especially now that you’re retired. AND huge yes on the Diabetes Research Institute. I’ve donated and like you I appreciate their laser focus!!
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