Tag Archives: hope

2015 Diabetes blog week Day 1- I can

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“What have you or your loved one accomplished, despite having diabetes, that you weren’t sure you could? Or what have you done that you’ve been particularly proud of? Or what good thing has diabetes brought into your life?”

My diabetes has given me knowledge and a need for understanding.

 

It has given me knowledge about an autoimmune disease and the various complicated pieces of managing it. It has taught me to truly understand my body and how I feel, what I need, and when something isn’t right. It has taught me the influences, interactions, and consequences of everything I do and its effects on my body and blood sugar, from food to exercise to stress. It has made me an expert in carbohydrates, a constant cruncher of numbers, and a person always seeking for answers, explanations, and ways to improve.  

My diabetes has given me empathy and gratitude.

 

Diabetes has given me a window into life with other illnesses and obstacles. Every disease is different and has its own set of challenges, but it has helped me to be empathetic towards everyone and what each person is going through. It has taught me to not be so quick to judge, to stop and consider what other people may be going through, even behind closed doors. It has given me an appreciation for the health and abilities that I have and gratitude for the way things are, as there are people that are not as fortunate. 

My diabetes has taught me to stand up for myself.

 

Between all the doctor’s visits, calls with the pharmacy and insurance company, nurses, and medical device customer service, I’ve learned to not put up with mistreatment and disrespect. I value my health and have learned that I don’t have to put up with people who don’t respect my time or my health. From switching doctors to getting the courage to ask for a manager on the phone, my diabetes has helped me be more assertive and in charge of my condition.

My diabetes has taught me about hard work, persistence, and discipline.

 

There are good days and there are bad. My diabetes has shown me the importance of having goals and that hard work usually pays off in the end. It has taught me that even when things aren’t going well, to stick with it, that tomorrow is a new day full of new numbers and new experiences. It’s taught me to not give up, despite the frustrations, challenges, and fatigue of caring for my diabetes. I’m strong enough to get through today, and the next day, and the next.

My diabetes has given me direction, purpose, and a voice.

 

My diabetes has led me into the field of public health and my career in health communication. My diabetes has helped me become an advocate for a cause I believe in. It has given me volunteer opportunities and led me to my position on the JDRF Young Leaders Committee. It has given me a voice through my blog and has led me to amazing people who I’ve shared my story with. My diabetes has given me a community. It has given me a sense of belonging, and my connections have inspired me in my own care. My diabetes has given me a platform to make positive change in the lives of others as we all work together to find a cure.

Missing puzzle pieces

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I’ve felt like Goldilocks lately. Although maybe a Goldilocks with brown curly hair and way less luck.

I’m starting to have issues with my new endo. Again, the issues that I am having are less about the specific doctors and more about my frustrations with doctor’s and the office not utilizing the technologies that are available to them to their full potential. And misusing the ones that are.

Like most T1Ds, I have a lot of devices that carry a lot of data. And those devices are able to download their information when connected to a computer. But you get slightly different information from my pump (finger prick glucose numbers and insulin delivery amounts) than from my CGM (glucose numbers from the sensor) and I don’t always think that the CGM is the most accurate, especially at the beginning or end of the cycle I wear it.

At my new endo office, my doctor downloads my CGM and pulls up a graph of the last week. She doesn’t take my pump or meter, in fact, I once asked why not and she wasn’t even sure she had the right equipment to download from the pump. I completely trust that my doctor knows what she is doing and her recommendations do make sense. But I’m often left wondering if the recommendations would be the same if we were looking at 2 or 3 weeks worth of data or even looking at glucose numbers from my meter (which are on my pump) in addition to my CGM.

On one hand, I’m grateful. I remember when I was first diagnosed being handed a little log book that I would have to manually write in my glucose numbers. But on the other hand, I’m frustrated with the way things are. I want integration. Maybe it’s time that I align my pump and CGM to compatible companies. Then at least all 3 of my devices would be talking to each other for a more complete picture. But I’m lazy and don’t want to learn a whole new pump or CGM system when I’m generally satisfied with both separately.

And while part of the responsibility is fully on me as the patient, another part is on the doctor and the offices to keep up with changing technologies so that they are effectively and accurately using the data that is available to them.

I feel like my diabetes is a puzzle and my doctor is only looking at a handful of pieces when telling me what to change. You’re looking at the trends in my blood sugars, but you’re not looking at my boluses throughout the day. You’re not looking at the foods I’m eating (which I have been tracking in a separate app for the past 6 weeks) or exactly when I eat them (besides asking me generally when I eat). You’re not looking at when I’m exercising and what kind of exercise I’m doing, when my cycle is, when I got sick, and even when I was feeling extra stressed. My numbers are all important, but alone, they lose some of their meaning. You’re looking at my blood sugars essentially in isolation because:

A) that’s the data that’s available to you
B) we only have a finite time together so you aren’t able to ask me about all these other factors
C) there is no universally used platform that can integrate this information easily for you

I’m frustrated. But I’m also hopeful. I know that today, my data is more available, accessible, and interpretable than it was 10 years ago. But I know we have a ways to go before every office has the equipment, the skill and the motivation to look at the whole puzzle for every one of their patients, and not just a few pieces.

A Melody of Hope

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I know my beeps. I know my beeps similar to the way a parent can recognize the cry of their baby. I know the sounds that my insulin pump and meters make. I don’t get them confused with other alarms, dings, and noises of everyday life. And since I’m usually not surrounded by other pump wearing diabetics, I know that the beeps are for me. That is until I go to a diabetes event. What a strange phenomenon it is to be surrounded by dozens of other diabetics. My beeps become lost in a sea of similar noises, mixing with the sounds of countless other pumps and meters. My unique identifier becomes a unifying force, a sound signifying a shared experience.

My contribution to this year’s mosaic mural

The past two weekends I’ve had the pleasure of attending 2 different JDRF walks, one in Chicago and one in Ann Arbor/Dexter. In Chicago, I was volunteering with an amazing organization called Project S.N.A.P, collecting artworks drawn at the walk by T1Ds, their families, and their friends to become part of a giant mosaic mural. You can read more about my experiences with Project S.N.A.P in this post, or on their website. The second walk I attended as a representative of the Young Leaders Committee of my local JDRF chapter. It was the second JDRF walk that I’ve ever attended as a walker.

I attended my local diabetes walk with my mom. The walk was in a beautiful Metropark, the path winding through trees with changing colored leaves. Although it was raining, it was still a beautiful and enjoyable walk. At one point my mom turned to me and asked if I was sad/upset that we didn’t really do these walks when I was growing up. I wasn’t mad. Mostly because I knew that my family always supported me. The walk that day was a perfect example. Knowing that I wanted to go to the event, my mom skipped her normal Sunday plans to wake up early and drive 45 minutes to walk in the rain with me.

But even though I am not upset, I know that I did miss out on some amazing experiences. When I looked around at the walks, I saw teams sometimes with 10-30 people all there for one special type 1 diabetic. They were there showing their support by physically coming together, by putting on their team t-shirt with their creative names and bright colors, and spending the morning dedicated to that one child with diabetes. I can only imagine how special that child must feel. Yes, they were being singled out because of their diabetes, but in a positive way. For at least one day each year, that child isn’t alone in their experiences. They aren’t the only child with diabetes. They are able to come together and see other children just like them, to meet and talk with them.

My parents had their own reasons for not pushing to go each year, but I know that if I had expressed an interest to attend these walks when I was younger, that we would have gone. Perhaps I didn’t know at the time what I was missing out on. I was content with the support from my friends and family and with the few other diabetics that I knew.  But these past two weekends while I stood in a sea of other diabetics, I heard those beeps, my beeps. And while it was confusing and odd to hear them, each beep seemed to say “You. are. not. alone. beep. We. are. in. this. together. beep.”

It was the melody of hope, of support, and of all the efforts to find a cure.

Diabetes Art Day 2013

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Today is Diabetes Art Day, and my first time participating. I’m so glad that I learned about this opportunity as I am quite excited to be combining my creativity and love of art with such an important part of my life, my diabetes.

Taken from the website, here is a description of the initiative:

“Diabetes Art Day is a web-based initiative for the Diabetes Online Community to “tell a story” about life with diabetes though creative visual expression. It’s a way for us to tell our stories so we can connect and share with each other and with our loved ones. It’s a way to generate diabetes awareness outside of the DOC (diabetes online community) by sharing artwork on Facebook, Twitter, blogs and community websites…Diabetes Art Day is for you to show the world what it’s like to live with diabetes in that “a picture is worth 1000 words” kind of way.”

I’ve never really been one to sketch out my work before I begin. I always just start and see where the picture takes me. And that’s exactly what I did. Here is the final result:

 
Depicted in my artwork are three fishlike creatures, representing the dark and mysterious unknowns of diabetes in general and of the daily management of it. These ominous creatures are always swimming and lurking, whether in darkness or in light. They feed on the blood sugars, shown here as a school of CGM arrows. The varying directions of the arrows shows the ups and downs of my blood sugar, as they swim through and around difficulties and obstacles. The repetitiveness of the arrows also signify the repetitive nature of the disease: blood sugar testing, carb counting, bolusing, blood sugar testing, carb counting, bolusing, etc. The light and colorful background is in stark contrast to the dark creatures, showing that hope and light can and does still exist. Finally, the intermittent patches of tape say that even though there are unknowns and moments of darkness and fear, I will stick with it and take care of myself and my diabetes.
Working on this artwork was a truly positive experience. It allowed me to take some time to reflect on what it is I wanted to share about living with diabetes and how I wanted to accomplish that visually. It had been a while since I had done anything artistic and I appreciated having such a positive purpose behind my work.
I hope that you will take some time to look at some of the other wonderful pieces submitted by people living with diabetes, found on the Diabetes Art Day website.