World Diabetes Day 2019 by Grace

November 14th. World Diabetes Day.

This entire month has been dedicated to raising awareness about Diabetes, but one month truly is not enough time. This disease has no off days. It’s 365 days a year, 24 hours a day, and ALWAYS on your mind. This disease consumes your entire life and every single piece of energy you have. Diabetes is a full time job to keep yourself balanced with good blood sugars, correct insulin coverage, correct carb ratios, correct basals, and MORE. Diabetes has taught me an enormous amount of lessons in the long 10 years that I have had it. It has taught me to self advocate and just to accept myself for what I am. The journey to this point though hasn’t necessarily been an easy one. It has been definitely more low points than high points. 

Lately, I’ve been struggling with dealing with everything that comes with it. I often wish I could just be a normal 17 year old. I am so tired of all the checks and alerts and pump changes and just having this disease in general. There are days where I cry and cry about this life I was given. I cry about how my parents have had to deal with all of this (including insurance battles!), while just trying to raise their daughter. I cry about how my friends get to live their lives and never have to worry about if their blood sugar is crashing. I cry about my future with Type 1 and how I will never escape it. I never asked for this to happen to me and I question; Why me?

However, I always look to the other side. I realize how grateful I am to still be alive and healthy and have the access to things I need to live. I’m also forever grateful for the community I’ve found through this disease. My camp family will forever hold a special place in my heart. They showed me how to live life and not let Diabetes live it for me. Most importantly, they understand and I will always be extremely thankful for them. So, my advice to you on this World Diabetes Day is to educate yourself on this disease and all the things Type 1 Diabetics have to deal with on a day to day basis. To all my fellow diabetics out there, you are so strong and know that there is hope for a day where Diabetes will be in the past. Here’s to hopefully not too many more years living this life with Type 1.

Diabetes Camp - Year 10!

When Grace was 7 years old and went to diabetes camp for the first time, I remember her telling me something on the ride home from camp. "Mom, I want to be a counselor when I grow up!" and I smiled. I was just worried about one more year of camp, and here was Grace, telling me the future.

It's all come true. Grace is now a diabetes camp counselor! This year was her 10th year going to camp, and she went through the CIT 1 and the CIT II program last year and the beginning of this year at camp. She completed both and was promoted to Jr. Counselor, with an invitation to interview for a counselor position at next year's camp. I am so very proud of her.

It was her 17th birthday while she was away at camp. That was bittersweet. I was reassured that she was spending her birthday exactly where she wanted to, at her favorite place to be, among friends. Her fellow counselors decorated her bunk so she woke up to lights and signs for her birthday. It was incredibly sweet.

Diabetes camp looks different when you are older. There is so much more independence. There is so much more autonomy. There is so much more responsibility. There is so much more caring for others. Grace likes the younger campers more than the older teen campers. She likes to keep busy. She's responsible for helping with 12 am and 3 am blood glucose checks on the campers. She's responsible for helping plan activities and run them.

Camp looks different for me as her mom too. She's solo on her management. She actually let me follow her on Dexcom while she was away at camp! She texted once or twice about it, but otherwise it was all hers. And I didn't say one thing about it all week. She got through it amongst her people. She managed it all. Was it 'pretty?' I don't really care. I don't. I am done with the illusion that if we just get the right A1C, we have the perfect diabetic and the perfect life. And I am saying it very clearly, this is HER diabetes, NOT MINE.

Diabetes camp, for Grace, has saved her soul. And I don't say that lightly. She is more herself at camp. She is comfortable, in ways that are not possible even among her close friends at home. She is understood. She is incredibly happy to meet others and share her life. Onward she goes.

You can visit her past years at diabetes camp here:

Year 9

Year 8

Year 7

Year 6

Year 5

Year 4

Year 3

Year 2

The first year

Year 10

Grace was diagnosed with Type 1 diabetes on January 9, 2009. Today marks 10 years.

I remember thinking about milestones like this when I was in the hospital with her. I thought, what will it be like for her to live 5 years, 10 years, 25 years with diabetes? They were thoughts I entertained as other, more devastating thoughts lurked in the background. It was quite a shock, to find ourselves with a 6 year old with diabetes. It still is sometimes. The memory never quite leaves you of the day.

It was such a strange thing, to have her diagnosed. The moments themselves are clear in my mind, as if it happened yesterday. The parking outside the ER entrance, getting her out of her carseat, the walk in to the ER, the sheets on her hospital bed, her stuffed elephant she brought with her. I can make it all out in my mind. The hospital is close to us, and it's our go-to hospital for sickness and for visiting loved ones. I could lead a path right where we walked. I feel a rush of it all as I enter the hospital, each and every time.

Wouldn't it be something for me to have seen where she is now? I didn't know what 10 years with diabetes would do to someone, and do to a family. In some ways, it shattered us and forced us to rebuild. In many ways, it brought our love for Grace to the forefront, in fighting the battles she was at times too young to understand. It has led us to meet people we would not have otherwise met, and have the grandest times. I wish someone would have told me 10 years ago about those parts. I would have loved to hear it.

Grace is 16 now, and a teenager, and all it entails. She is girl-on-her-own, with a social life that rivals a pop star. She dances competitively on a dance team. She rocks the 11th grade. She has her sights set on college. She manages her diabetes with a pose that I surely would not have had. She gets ticked off with diabetes, and she also rolls with it. I marvel at all the times she packs up her diabetes kit, grabs a juice and a snack, and tells me where she is going and what time she will be back, not mentioning her diabetes once.

So, to the 6 year old Grace, who I thought was shattered by this diagnosis and would never do the things she wanted to, because it would hold her back, I want to say something.

You should see her now. She's glorious.

Happy 10th Diaversary, sweet Grace!
oxo

Year 9

Year 8

Year 7

Year 6

Year 5

Year 4

Year 3

Year 2

Year 1

2018 Insulin - The Cost

Grace is 16 now. There is less to write about regarding mothering her with diabetes, mainly because it is HER diabetes, not mine. I do my mothering in the background now, not so much in the forefront. She is a teen and manages on her own, with occasional help from me. The part I do still manage is everything associated with insurance. It's almost a full-time job in and of itself.

I saved Grace's vials of insulin in 2018. I wanted to see what it looked like for a number of reasons. One, to visualize it and two, to get at the cost of it all. Grace uses Novolog in her OmniPod pump, and has Lantus in the refrigerator as a back-up should the pump fail and she needed to do shots. Her prescription is for three vials a month of Novolog and one vial a month of Lantus.

Grace is not on private health insurance. In Pennsylvania where we live, she was eligible for Medicaid, as she has Type 1 diabetes. When she was diagnosed in 2009, she originally was on our private health insurance, but it was at the time insurers could kick you off if you had a pre-existing condition. When she was diagnosed in January of 2009, my husband's company was switching health insurances, and we had to submit that Grace had Type 1 diabetes. The company was Aetna and they promptly denied her health insurance. The state then picked her up through their CHIP (Children's Health Insurance Program). It turns out, children with diabetes are very expensive (!!!) and CHIP removed her in 2011, sending her to the state Medicaid program. She has been on Medicaid since 2011.

Let me be very honest with you, Medicaid has saved our family from bankruptcy and losing our home. On either of our private health insurance plans, the co-pays for medicines range from $20-$40. Grace currently has nine medications that would qualify. Every month. If we take the midline of the co-pay, that is $270 a month for co-pays alone each month. Doctor visits would be $50, and she sees the endocrinologist four times a year, that's another $200. Medicaid has no co-pays for medicines and no co-pays for doctor visits. She can stay on Medicaid until the age of 19.

It what I fear she faces after age 19. At this rate, the cost of living with diabetes is unsustainable. It's not only the cost of insulin, it's everything that goes along with it, from pump supplies to glucose tabs, to blood ketone strips to adhesive removers.

The most concerning, for me as her mom, is the rising cost of insulin. There are some great articles about the cost of insulin and what is happening. Here is one from The New Yorker. Here is one from CBS News.  Time. U.S. News. WebMD. And on and on and on. Do a generic search for 'costs of insulin' and up pops hundreds if not thousands of pieces about it. The costs is literally killing people with Type 1 diabetes. Again and again. It is unacceptable to me and to others.

Grace used 35 vials of Novolog in 2018. At the 'market price' of $300 a vial, that is $10,500 worth of insulin if she had to buy it without insurance. Just for insulin to keep herself alive. That's not even paying for needles if she has to inject and not even paying for her insulin pump. That's not even paying for every other supply she needs, just to stay alive.

There is a movement afoot, and I encourage you to join in. The organization leading it is T1International. They are founded by people with Type 1 diabetes who work for the accessibility and affordability of insulin and diabetes supplies for people around the world. Their hashtag of #insulin4all advocates for affordable insulin for everyone. EVERYONE. Dr. Banting shared his patent for insulin for $1, so that it could be shared with everyone and keep them alive. Before his insulin, people with Type 1 diabetes died.

I fear we are coming full circle. If you cannot afford insulin, it's the same as not having access to it. What happens when her insulin costs continue to rise and she is not on Medicaid anymore? I'm not sure as a college student she would be able to afford her insulin. She has her family, but shouldn't she be able to access life-sustaining medicine at an affordable cost?

I urge you to become involved if you love someone with Type 1 diabetes. It truly is a matter of life and death.