Friday, September 22, 2017

My 13th year with Type 1 Diabetes


Alternate titles for this post were "Happy 13th Deathiversary, Pancreas" and "The 13th Year" (after the Disney Channel original movie, of course). Today marks 13 years living without a fully functioning pancreas, and instead living with type 1 diabetes. It has been a journey full of the most literal highs and lows. I've learned a lot and I've grown a lot —this year, I celebrated my lowest A1c yet.

For over a decade, I have been trying to figure out and manage this disease, while still celebrating the tiniest successes to avoid losing my mind. Type 1 diabetes management is really difficult, and the truth is, modern science and Western medicine just don't know enough to make management sensible. We still don't even know what causes this disease. There are only so many variables we can account for —carb:insulin ratios, basal rates, correction boluses, stress, illness, infection, menstrual cycles, exercise, and literally the weather. But there are so many more variables that we just have to do our best guesswork with. Hint: you will never be able to account for all the variables that affect type 1 diabetes.

With my 13th year of managing type 1 diabetes coming to a close, I decided it was time I wrote a bit about my journey with it, and how I've gotten to a place where I feel like I know what I'm doing more often than I don't. I've managed type 1 diabetes through a lot —but managing it through an eating disorder and being uninsured are the two obstacles that I struggled most to overcome. It took me a long time to get here, where I can look back and not feel like I am still fighting through them.

When I was 20, there were a lot of things in my life that I couldn't control and desperately wanted to. My way of dealing was to withdraw from the world around me and control what I ate. It makes total sense that people with type 1 diabetes are more than twice as likely to develop eating disorders than the rest of the population. Managing type 1 diabetes heavily relies on the measuring, counting, planning, the constant monitoring of, and overall focus on food. When I reflect on that era of my life, I always try to remember how it affected my diabetes —and honestly, I can't remember much about that. I was so focused on counting calories, my exercise schedule, and weight loss that I'm pretty sure my blood sugars were on the back burner.

I engaged in this behavior for about a year, until I removed myself from the situation that initially triggered it. It was then I started the slow process of recovery, which, for me, took about five years. I can only speak to my personal process of recovery, which was self-guided.  It happened little by little, each year, as I slowly processed my actions and realized how they were at odds with my values of self-love, optimal health, and living life in a way that fills me up so that I can give to others.


During my recovery, I found myself hit with another emotionally taxing health event. At the age of 23, I was uninsured. I remember much more clearly how this affected my diabetes management, and —spoiler alert! — it wasn't pretty. I was still in college as a full-time student, working a lot to pay my bills and school expenses.  I was busy trying to make ends meet and finish school, while trying not to freak out about how I was going to get my next supply of insulin. Being uninsured left me with a lot of really fun emotions namely fear, anxiety, and anger that lingered for more than a year after I was able to purchase my own individual health insurance plan, thanks to the Affordable Care Act. I was dealing with severe insulin insecurity. I was panicked, afraid, and unsure about where my next supply was coming from, and whether or not I could afford it. My response to this panic was to ration my insulin —that way, I always had extra for emergencies (what if I accidentally dropped a vial?!).

If you don't have diabetes and are reading this, try to keep in mind that I cannot stay alive without this precious liquid. If someone with type 1 diabetes doesn't have enough insulin, their blood sugar will be high, meaning they have excess sugar in their blood (a.k.a. diabetes), which causes a whole list of problems. In severe cases, it can even cause coma or death.

While I was uninsured, I went to a clinic where I picked up monthly boxes of insulin and had regular A1c checks through a program called the Hospital Emergency Room Alternatives Program. One of the only concrete markers I have for how I was handling these events in my life was my first A1c reading there:  9.3%, translating to an average blood sugar of  220 mg/dL. By the time I was able to buy my own insurance plan, I had been at the clinic for seven months and my A1c was down to 7.2%. My nurse Cliff, so proud of my improvement, gave me the little piece of paper with my A1c number to keep.  It stayed in my wallet for years, a small reminder of my ability to take control of my health.  

To get my test strips every month, I drove to a shady industrial complex 30 minutes from my house to buy 5 to 6 boxes of 50 strips for $10 each. I had to call when I was on my way to let them know, and then ring a bell and wait for them to come unlock the door to pick up my strips when I got there. It was weird, uncomfortable, and inconvenient, but I was so thankful to have an option that was affordable to me.


Now, I still have health insurance, and I wear the Omnipod insulin pump and Dexcom continuous glucose monitor (both absolute game changers for me). I still follow a plant-based diet. My latest A1c was a record low for me: 5.9% (translating to an average blood sugar of 123 mg/dL). I ate a whole bag of my favorite potato chips and four giant kale salads this week —and as of this writing, it’s only Wednesday. So, I'm doing pretty well. My late teens and early twenties were the hardest living with diabetes so far, but it got a lot better. My advice to myself and anyone else struggling through that period  is to be patient with yourself, do your best, and try really hard to love and forgive yourself.

It took a while for the emotional damage I incurred from both my disordered eating and my struggle with insulin insecurity to be resolved. If anyone you know is struggling with one of the many facets of type 1 diabetes management — especially in adolescence —my advice is to meet them with support. Be patient with them. Ask questions and be empathetic. Someone once told me that diabetes is a marathon, not a sprint, and that has stuck with me. It is a reminder to give myself grace and not wrestle so hard with perfection. We all have to go through our own journeys to find our version of peace and health — whether that is with diabetes or not. I've learned to let go of the idea of "bad" numbers and "bad" foods, which has changed my perspective. I strive for balance and empower myself by nurturing my intuition, instead.


Although it has taken me two-and-a-half years of having this blog to share my experience, I know how important it is to share stories of struggle with each other, whenever we are ready. I know I'm not alone in having a history of disordered eating with type 1 diabetes, and I know I'm definitely not the only person who has experienced insulin insecurity.  Let's talk about this. Tell me your stories. Email me if you want at baileyrwest@gmail.com. And if you live in Louisville, come to our next Type 1 Meet-up in October! I would love to meet you.

2 comments:

  1. As a mother of a child with T1D it is a very helpless feeling....knowing your child will have this challenge indefinitely. The constant daily concern for their well being can be draining. When my daughter was 1st diagnosed I was very saddened as I was very aware of what it meant to have T1D.
    Although we knew a few friends and family members who had it as well, it's a whole different ballgame when it is your child. Your child that you want the VERY best for..your child that you tried to raise so healthfully so they could have the best chance at anything they would ever want to be or do...your child that you breast fed, wouldn't let eat candy regularly, fed veggies when the other moms were in the drive thru getting their kids chicken nuggets and soda....your child that you made sure got 11 hours of sleep each night, your child that you tried to expose to endless extra curricular activities and endless enrichment, yep it's different when it's your child. It changes everything! I went through a period when I was obsessed with my daughters T1D, because I wanted to control it! Then I had to back off, clearly it wasn't my body or my place to place judgement on her diabetic care. Lord knows she was on top of it more than I would realize as the years went by. I once told her she would be the poster child for T1D! I couldn't be more proud of how she has succeeded on her journey. She doesn't let anything stand in her way of doing what she wants, or being who she wants. T1D is a Marathon that is for sure. But I know that my daughter is a fantastic contender!
    One very proud Mom, I love you Bailey

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