My Journey

This post was recently shared on MyID’s T1D blog, but it is important to me to make sure it has a home on my blog as well. This is my journey…

Everyone has moments in life that rock them to the core, ones that change their thinking or put them on a whole new path. For some, those moments are joyous things like marriage or the birth of a child. For others, those moments might be shrouded in challenge like the loss of something or someone important. I think those challenging moments are essential to living because you never know what you are capable of without them. Like many people, I have had numerous positive and challenging moments that have stopped me in my tracks, but my daughters Type 1 Diabete diagnosis brought me to my knees.

I have been actively managing my own T1D since my diagnosis over 26 years ago. The management of my T1D has just been a daily thing to do like getting dressed or making my bed. I didn’t go out of my way to share the literal ups and downs of living with T1D. My mentality was “it just is what it is” but I also thought the act of sharing would result in people sympathizing or pitying me for something that was my reality. I didn’t want people to feel bad for me, I wanted them to see past my T1D and see me. Of course, if someone asked me about giving myself an insulin shot or taking my blood sugar levels, I would talk with them about what I was doing and why but for the most part I keep my invisible disease invisible.

This all changed when my daughter was diagnosed with T1D in December of 2018 at the age of 18 months. Suddenly, I realized that I couldn’t continue to be quiet about life with T1D. I realized that sharing is a critical part of the journey with this autoimmune disease – the more I share, the more people know, and the more they know, the more they understand what’s its like to live with T1D. Without this basic understanding, there is nothing – no support, no love, no fight for a cure.

When I tell people about Nora’s diagnosis, generally the first response is “she’s so lucky to have you”. I give a smile and a nod but think to myself “I’m lucky to have her”. Her moment has changed me – the way I think about this disease, the way I interact with it, the way I talk about it. Now, I’m shouting from the rooftops that we have T1D and that we will continue to rise up and do our part to educate and fight for a cure.

Wanted: Accountability!

I’m sitting here waiting for my oil change to be done and thinking about how much life has evolved for me over the last few months. Last year, my days were filled with diapers, snacks, errands, and all the adulting. Now they are filled with all of that plus carb counting, needles, and more technology than I ever expected. Nora’s T1D diagnosis last December lit a fire in my belly – a fire I needed more than ever. Now don’t get me wrong, I would LOVE for her to lead a life without T1D. I would love to lead a life without T1D too! It’s not something either of us had a say in, but we move forward and make the most of our circumstances while trying to have a little fun along the way.

I think this is why I have become more active on social media and sharing our T1D stories. I am having fun educating and helping people understand the literal ups and downs with this chronic disease. I’ve been following others on their journey and I can totally relate to the stories they share. I hope that the stories I post are ones others can relate to or can learn from, but for me sharing our story on social media helps keep me accountable.

If you are a parent you understand that you need to fill your cup before giving to others. I STRUGGLE with this on the daily! Not just with self-care, but, before Nora’s diagnosis, the daily management of my T1D. I would eat when I could, forget to take my lunch time bolus, or just generally be lazy with the day to day management of my T1D. But then Nora was diagnosed and she forced me to be better…be better for her management AND mine. I need to ensure I am taking the best care of myself so that I can continue to help her through her T1D journey.

So thank you social media for helping to keep me accountable and for bringing us a little closer to those who have similar experiences.

Grateful, but disappointed…

Let me start this post by saying that I am grateful we have access to reasonably decent health insurance. Without it, life as a person both living with T1D and parenting a child with T1D, would be monumentally different. However, my gratitude only goes so far, especially when health insurance companies dictate what T1D supplies or tools are and are not covered.
When Nora was first diagnosed and in the hospital, she took Humalog (short acting) insulin and Levemir (long acting) insulin. These were great options for her because she needed to be able to take her insulin in half units and these brands provided that option with minimal issues. When we were discharged from the hospital, we left with 15 or so prescriptions and it was overwhelming to get them filled, even for this mama who has had T1D for over 25 years. When I went to pick up her prescriptions, the pharmacist told me that my insurance wouldn’t cover Humalog and Levemir. What the…?! Why not? Because they are not my insurance company’s preferred brand of insulin. I contacted Nora’s Endo and they worked through the insurance and prescription process to get Nora all set with her insulin. The insulin that she uses now is just as effective as the insulin she used in the hospital, but because of the brand switch we have had to make accommodations to ensure she can still inject in half units.
On February 1st, UnitedHealthcare, one of the nations leading insurers, put in place a policy that says they will no longer cover all brands of insulin pumps for persons with T1D ages 7 and up. Instead, UnitedHealthcare has selected a preferred insulin pump brand. Patients are able to obtain non-preferred insulin pumps but have to go through additional approval steps, which are generally not successful. Imagine getting your groceries from a near by grocery store for years and then all of the sudden having to shop at a grocery store thirty minutes away because your original store no longer accepts your payment. That is what this new policy is doing to families who live with T1D, except we are not talking about groceries, we are talking about human lives and the quality in which they are lived.
This new policy doesn’t impact Nora or me directly, but we have had more than one experience dealing with an insurance company’s preferred brand and we most certainly will have similar experiences in the not so distant future. The fact that an insurance company can dictate what supplies and tools a person with T1D can use to manage their disease is infuriating and unethical.
If you would like to join me in voicing opposition to UnitedHealthcare’s new policy, please Take Action. A business has no business in deciding what is best for a persons management of T1D. T1D is not, and never will be, a one size fits all disease.

Knowledge or Blissful Ignorance?

For those readers that are new to Type 1 Diabetes, it is a disease where the body attacks itself and can no longer make its own insulin. Insulin is a necessary hormone whose main job is to convert food into usable energy. People with T1D rely on getting this hormone in their body from an outside source through an injection or shot. It’s a fascinating (and sometimes frustrating) disease that requires the daily micro-management of food, exercise, and insulin. Even more fascinating is that there is a blood test that screens for T1D. This test looks at a persons blood for the autoantibodies that are associated with T1D. Positive results for these autoantibodies indicate that said person is at a high risk for developing T1D.

I first learned about this screening when Nora was diagnosed last month. Before then, I had no idea it existed. While in the hospital, her endocrinologist and diabetes educator asked me if we would like to have our other two daughters tested. “Thank you, but no thank you” was my immediate response.

Later that night when Nora had finally fallen asleep, I put more thought into why I said no and more importantly why I said it so quickly. I mean, our family tree is scattered with T1D. Besides myself, and now Nora, I have a cousin and an uncle who both have T1D. How is it that the youngest person in our respective core families came to be persons with T1D? Well, the exact cause of T1D is unknown and generally thought to be brought on by a combination of factors including environment and genetics. So if the cause of T1D is multifaceted, what is there to gain by knowing if my big girls have these autoantibodies? First and foremost – research towards the goal of finding a cure. But for us, with Nora’s diagnosis still being so very raw, there would be a lot of unnecessary worrying and second guessing of everything.

Would you want to know if you kiddo was at high risk of developing a disease knowing there was nothing you could do to stop it? Or would you rather soak in the moments of blissful ignorance? There’s no right or wrong answer, but for my family – we choose blissful ignorance…for now.