I Finally Have a Continual Glucose Monitor! Here's Why That Makes Me Angry...

I recently had the opportunity to purchase a continual glucose monitor, and in just 5 days, it has completely changed my life. Since I was diagnosed with Type 1, I have wanted one, but back "in those days", they weren't considered reliable enough to be a regular substitute for blood glucose testing (just an adjunct), and they weren't typically covered by insurance. The definitely weren't covered by Medicaid. You can imagine how excited I was to come home last Tuesday and discover the Dexcom box on the doorstep. I excitedly ripped it open, reflecting on how much this meant to me, and how long I had had to wait for one - 8 years. 8 years almost to the day, as I realized with a laugh that my diabetes "birthday" - April 3 - had come with a present this year, just one day early. 

Here's a video of me describing my experience with my CGM after Day 1 in case you feel like watching me talk about how I still hate needles for 3 minutes

I peered at the auto injector after turning on my transmitter, suddenly terrified. I grew up with an intense fear of needles, and saying I've overcome it in my 8 years with Diabetes would honestly be a stretch. More like, I've adjusted around it. I don't cry when someone has to take blood or give me an injection now. I'm okay with blood glucose testing, but I have to do it on myself. I need to have control. I wish I were better with managing my fear, but this is the best sort of agreement I could make with myself to manage staying alive. Not too bad. But I couldn't even see how big the needle was hiding in the injector. How was injecting it going to feel? The fact that I couldn't anticipate these things made me highly anxious. People rarely ask Diabetics how they feel about all the needles. Actually, they never do. By people, I mean health care practitioners. You're just expected to do the damn thing. But heck, those things hurt sometimes. Pumps? CGM's? Syringes? Needles? Lancets. They don't feel good. Sometimes, I feel like I'm just a wuss because I still think these things hurt quite badly sometimes. Not always, but sometimes. I can't really think about it, or dwell on it, because that's really not conducive to getting on with my life and, again, doing the damn thing. But in the early days, I used to meticulously count how many times I'd have to endure pain to get through the day. Twice at mealtimes, once before bed. Two in the morning. 9. I endured pain 9 times. This isn't to garner pity for myself, it's just to say that I've spent a long time getting to the point where I don't think about it much these days. I just try to get on with my life. It works well enough.

I must have pulled up at least 3 youtube videos on people injecting the Dexcom G6 sensor for the first time. No one seemed to flinch, but heck, the first girl who did it had cystic fibrosis. Were these people just all used to it and I wasn't? I put the injector up to my abdomen... and then realized it was stuck. Crap! The sensor is surrounded by a tape that adheres to your skin. If I ripped it off now, I'd ruin the sensor, and it wouldn't stick to me. I was upset. I couldn't bring myself to press the button. Kris offered to press the button. I thought about it and then chickened out and skittered away. I called my mom, trying to get the courage to do it. Damn it! This was like injecting myself for the first time. I remember sitting in the booth at the sushi place. "I'd just do it," my mom told me. "Because if I don't, I'd die. You just have to do it." Not particularly comforting, but actually, my mom has a way of not sugar coating things that helps sometimes. I cried, but I did it, feeling very sorry for myself at the time.
30 minutes later, I finally pressed the damn button, and actually, I didn't feel a thing. I shook my head, annoyed at this fear of needles, still. Hopefully, next time it wouldn't take as long. I get to leave them on for 10 days at a time.

A CGM gives 24 hour feedback on your blood glucose, gives trends (is my sugar going up or down, and how fast?), alerts me when I'm high or low, and I can transmit the data to my phone and apple watch. It's utterly incredible, and I've never had anything like it. I immediately felt as though I'd been driving a car blind all of these years - unable to witness trends in between mealtimes, or stay on top of my blood glucose, or experience what it's like to treat a low before I'm actually low. Valuable time at work that I'd have to take out just to get a single number on a screen - unknowing if I would be high or low 30 minutes later - has now been returned to me. My quality of life is 10 times better with a CGM, and I noticed this after a single day.

And to be frank with you, this is where we get to the real meat of this post, because honestly, that makes me incredibly angry. Please be aware: this is not intended to sound like a complaint. But rather, it's a commentary on the nature of our current healthcare system. I waited 8 years for this technology that has utterly changed my life, because I couldn't afford it. 3 different kinds of insurance, and none of them covered this without a huge, thousand dollar expense on my part, plus hundreds monthly for supplies. Impossible to afford without huge sacrifices. 8 years of my life where I knew injecting 15 minutes prior to mealtime was important, but didn't personally witness the difference it makes in my blood sugar until just 5 days ago, witnessing the huge spikes and later crashes that are a consequence of waiting to inject even 5 minutes before a meal. 8 years of having to so often guess. Waiting until I'm symptomatic with a ;ow of 32 to be able to treat a hypoglycemic episode. Even now, I spent $700 on this CGM to meet my deductible, and it's still $60 a month just for my supplies for this meter. Not counting my $25 copaqy for each insulin I need. The fact of the matter is, this technology is so expensive, that it's unattainable for so many who were in my shoes. A CGM has been scientifically proven to reduce A1C levels. That's 8 years of better, tighter blood glucose control I could have had had this technology been affordable. That's 8 valuable years of me being complication free, a hugely important window of opportunity in which to care for my body, that feel almost wasted. So ladies and gentlemen, this is why I get angry when people brush off LEGITIMATE concerns on behalf of diabetics by stating that they can "just" go get insulin at walmart. When will people start realizing that this is not, cannot, be the answer? My A1C has lowered by 3 POINTS since getting new insurance this year. That is, on average, a change of more than 100 mg/dL in my average blood glucose over the span of 3 months. The difference between a future with complications and a future without. Because I can afford a long acting insulin that works great for me and a piece of technology that is a valuable tool to manage my glucose 24-7.

Diabetes is not one size fits all. We cannot brush off the concerns of others like me by stating that 50 year old insulin is the answer. This is like saying that people with depression should take MAO inhibitors - a more dangerous, older version of antidepressants with a number of side effects that have rendered them less popular over the years - versus SSRI's if they can't afford them. I cannot stress enough that affordable access to the kinds of tools and drugs I believe people  need is key. I suppose I feel so compelled to continue to state this because I cannot forget where I came from. I cannot forget what it was like to live in constant worry over my disease because I could not afford to properly manage it. And I cannot stop thinking of other individuals who have gone through and are going through this, too. Let us keep fighting until this changes.

8 Years: A Love Letter to Diabetes

Tomorrow will mark 8 years with Type 1 Diabetes.

Trying to wrap my head around this is as impossible as trying to believe that I had Diabetes when I was first told of my diagnosis. How I'd wished they were wrong when I first heard those words... my mind had flashed back to 7th grade. English class. I had a teacher who was Type 1. I used to hear her talk about how she had to prick her finger and feel terrified at the thought just listening. She'd given us a book to read about a girl at summer camp with Type 1, and she'd gotten made fun of at camp for asking for an apple on her tray to replace her cookie. Diabetes was a vastness of knowledge that I did not understand at the time, and there was no way that I could know that just 5 years later, I would face it myself and have to come to my own understanding. 

What a mental and physical battle this disease has been. It has given me deeper understanding in life, and the ability to extend compassion to others who feel isolated or angry, depressed or confused, about their diagnoses and individual illnesses. I have spent 8 years trying to come to peace with it, as well as learn to thrive despite the setbacks it has lent me. In 8 years, I believe I've done an admirable job. I have faced navigating a world of having no insurance, relying on faith, goodwill, and my own contrivance to survive, while not becoming bitter or closed off to the world and a life I've struggled before with thinking has been unfair to me. 

Diabetes has also hardened me. I've often thought of what exactly I mean by this... which can be a hard thing to explain to the outside. I think of myself as softer before my diagnosis. I'm quite a bit sad even still for that girl who didn't value every day... I wish I could go back. I wish I could go back. If somehow, I could get just one day from back then and relive it - I would treasure it in a way that words can't express. Just to savour one more day without finger sticks or needles, hypoglycemia or the fatigue after having repeated lows... not keeping a mini pharmacy in my purse. I had no way of knowing what this level of difficulty entails. I would choose to save anyone from that. I think of myself as having taken my healthy years for granted. I mourn for her. And then there's the line of my diagnosis that I crossed. I had to learn to grow harder. I missed the normalcy of my life, but I could only miss it as we all too often do: in retrospect. To overcome my fear of needles, to do what needs to be done. To sacrifice income, to sacrifice comfort, to sacrifice security, not even necessarily by choice - simply because of a defect in my genes. All to get on the same level playing field as many of you. To accept this as something I cannot change. I experienced a deeper understanding of what suffering meant. I experienced what it feels like to have my health, my future, and my independence come into question. I experience daily what it is like to fight harder than others without this illness around me in order to have the same opportunities. I learned to say no so that I could take time to care for myself. I learned to understand that who I was before my diagnosis and who I am now are different people. I've learned to take myself when I feel broken and beat down and glue those pieces back together. 

I've often wanted to ask God the question of why he chose me to live with a chronic illness. Chronic illness is a world of looking for positives. Adapting to pain. Lonely periods of questioning and feelings of isolation. Of wanting to draw deep into yourself. How does one move past that? 

This blog has been my answer to that. Talking about my illness has gotten me outside of myself, and helped me to take my anger and my frustration, as well as my sadness and confusion, and turn it into a platform to share with others. Something that makes me excited to talk about, and that gives me direction and inspiration to share with others.

Does that make up for the pitfalls? No... if I had one singular desire that could be met, it would be to live a life without type 1 diabetes. But for a girl that is terrified of pain and needles, who fought her way through grad school with no doctor or insurance... I've come a long way for simply wishing for what cannot be. I've learned to thrive without that comfort and security, while maintaining a sense of hope on the backburner still. The girl I was has been reshaped, slowly, through finger sticks and thousands upon thousands of injections and vein sticks. The girl I am realizes life is not a guarantee. I cherish each day. I cherish my eyesight, the feeling of warmth and soft socks on my toes, my functioning kidneys, my healthy blood pressure. I cherish my fridge full of insulin, and a job that lets me have that. I cherish the people that have helped me and the hands that have held me along the way. No, I am not that girl I used to be anymore. 

8 years, and I am stronger. I've learned so many powerful lessons, and I'm certain that so many more await me. 8 years, but a moment can bring me back to that hospital room, a nurse on each side, an injection in each arm. 2 am in the ER, coming back into consciousness, into a world I no longer knew. 

Can I live past that? I do every day. I will continue to, every day. One insulin injection at a time. Diabetes, I wish I could change you. But you are mine, as much a part of me as the rest of me. A part of me I cannot change. But a part of me I can never stop hoping to, which is as essential to my journey as living with you.

Thank you for following me on my journey these past few years. I hope that all of you continue to.