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Posts tagged ‘#amadiabetes’

Guest Post: Until Next Time, FFL.

Leigh Fickling was at the Friends for Life event this past weekend in Falls Church, VA and this morning, she posted about the power of FFL and of the green or orange bracelets given out to attendees on her Facebook page.  I asked if I could share her post on SUM, and she was kind enough to say yes.

Take it away, Leigh!

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The armband.

I remember laying in the hospital bed with Ava almost five years ago and looking at her little arm. She was three. Her arm and wrist were full of IVs and she had on a little tiny hospital arm band. The nurses scanned that band every time they came into the room. Blood sugar checks. Scan. Insulin shots. Scan. Vitals checks. Scan. It was an armband that broke my heart. I couldn’t believe that she had been diagnosed with diabetes and couldn’t imagine how we we ever go on. I laid in that hospital bed and held her hand and never felt more alone in my life. I was suddenly in a place that was unfamiliar and I was afraid. I took a picture of our hands and have that picture burned in my memory still to this day.

I remember moving over to the big blue mom chair in our hospital room and turning to Dr. Google. I didn’t know anything about diabetes but I knew the Google would know plenty. One of the first links that appeared in my search was for Children with Diabetes. Sounded like a good hit, right? I now have a child with diabetes. I followed the link and went to the webpage and found the information that I needed. Forums. I had no idea that the Facebook groups even existed yet but found people just like me in the CWD forums. Newly diagnosed. More seasoned parents. Providers. Peers. Support. I spent hours that first night reading as many posts as I could possible read. Learning. Writing down questions. Looking at my tiny daughter and her armband. Wishing that it would all just go away.

It didn’t. And, it might not ever.

Flash forward almost five years to Friday. It was time for another armband. This time I ran to the people giving out the armbands. I couldn’t wait for the registration table to open so that I could grab my bands and put them on our wrists.

This time, the arm band gave me hope. It made me smile. It made me laugh. And, cry. Instead of being isolated in a hospital room and feeling alone, I was with several hundred other arm bands. Parents just like me. Kids just like Ava. First timers. Old timers. Grandparents. Babies. The circle of diabetes life and we were right in the middle of it bound together by green and orange armbands.

Third grade is hard. Work is hard. Life can be hard. We don’t give up but we do occasionally get down. Who wouldn’t?

I think that I underestimated the power and magic of the orange and green band. The healing power. The friendship and companionship. Speakers at the top of the field giving hope about the future and tips to make it through until we get there. Kids that have screamed and squealed and run through a convention hall with absolute delight. Hair that smells like chlorine. Lips stained with sugar free fruit punch. Hugs and hand holds and elbow bumps. Lunches with moms just like me. Alarms ringing and one hundred people clutching their bags ready to offer glucose. Personal stories that ring true with everyone. Amazing session. Supporting vendors and exhibitors. So much food complete with little accurate green carb counts.

I think that my pancreas battery was running low.

Thank you Jeff Hitchcock and Laura Billetdeaux for helping me to recharge. This weekend. These Friends for Life. This is what diabetes is all about. Thank you and the entire team for giving us armbands that mean so much at times when we need it more than ever.

As we drive back home today, our armbands are still bright and intact. As the days fade, they will lose their bright colors but will still be a reminder that we are not alone. We are in this together. In a circle.

Until next time, FFL.

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Leigh lives in Durham, NC and is mom to 8 year old twins, Ava and Davis. Ava was diagnosed with type 1 diabetes when she was three years old. Leigh’s day job is the Director is the Disability Management System at Duke University and Health System, and her other job is to be Ava’s pancreas.

Until next time indeed, Leigh.  Thanks for letting me share your perspectives, and for everything you do for the diabetes community.

#amadiabetes: Preparing for College.

“In your senior year [of high school], what did you do to prepare for being away from caregivers?”

This question came in from someone through the #amadiabetes form, and I have some ideas.  Thing is, I only have one version of the answer, so I’m hoping others from the community can chime in either here in the comments section or on Twitter using #amadiabetes so that the answers can be seen.

What did I do to prepare for being away from caregivers?  I spent a lot of time trying to ease myself into taking over most of my diabetes care.  And part of that meant talking with my caregivers about what their expectations were, what my diabetes required, what I wanted, and how all those things ended up in a blender together.

Diagnosed as a kid (age seven), my parents stepped in immediately to manage my diabetes.  I was taught how to inject insulin, check my blood sugar, and we talked about the influence of food, exercise, and stress on my blood sugar, but the bulk of the worry and tasks were heaped on my parents.  Specifically my mom, who would check my blood sugar while I was asleep. (She would wake up early to get ready for work and would check my BG first thing … she said my hand would come out almost automatically from underneath the covers, one finger extended.  A PWD reflex.)  My mom assumed/absorbed most of the diabetes-related worry, leaving me to focus on being a kid and letting the torch of care be passed to me bit by bit.

Here’s what worked about how we passed that torch:

  • By the time I was a senior in high school, I had developed a sense of what it took to manage diabetes, and my responsibility for my own care was openly discussed.  My parents made diabetes management part of earning my license (no keys unless there was consistent evidence of checking my blood sugar before getting behind the wheel).  They punished me not for blood sugar results but for the lies about what might have influenced certain results.  (See also:  the time I lied about eating cupcakes)  Diabetes wasn’t something they put on a pedestal; it was treated with careful consideration.
  • Around the time I was 16, my endocrinologist started splitting my appointments between me and my mom together and then just me.  It was empowered as hell to be able to talk with my endocrinologist without a parental ear listening in.  I was able to be honest with my doctor and talk about my concerns or issues without worrying that I was contributing to my parent’s worry.  This approach helped me gain autonomy when it came to my disease.
  • I wish CGMs had been available when I was in college, because I totally would have worn one.  Partly because I would have wanted to be able to see my blood sugars in context, but also because the option to cloud my CGM data would have been enough to take a bite out of my parents’ worry … even if they were not the ones watching my numbers.
  • Before I started college, my mom brought me in on ordering supplies (at the time it was limited to test strips, insulin, and syringes, as I wasn’t on a pump and CGMs didn’t exist).  I gained some insight on what it took to manage the insurance side of all the diabetes crap, which helped me take the reins when I was out of the house.
  • And my parents always impressed upon me the importance of telling someone else that I had diabetes, as a safety net.  They never made me feel as if it was something I was supposed to hide.  Just get it out there, make people aware, and let that awareness serve as an umbrella of protection if I needed it.
  • My parents also had to make an effort to back off while letting me ramp up.  I’m sure that was really hard, but they gave me room to flex my independence and for the most part, it wasn’t a disaster.
  • I also discussed diabetes with my roommate before moving in.  More on that in this dLife column.

Things that we could have done better?

  • I wish there had been more food freedom when I was a kid.  Unfortunately, I was diagnosed in the time of NPH and Regular insulin, so we were always responding to the peaks of my clunky, injected insulin.  Food choices were really restricted due to that, and also because my diagnosis was literally met with a list of foods I couldn’t eat anymore.  That was the case for lots of kids diagnosed back in the 80’s – diabetes came with a list of “can’ts.”  Food was a loaded topic for me and as a result, the freedom of dining halls with unrestricted access and no parental supervision left me over-eating regularly and also over- or under-bolusing for my meals.  I didn’t know how to manage my own portions, and that took some time to figure out.
  • I also wish I had brought a mental health professional into my diabetes care team before college, because that would have helped me sort through feelings tied to disclosure and confidence in college.  My college experience opened me up to the fact that, once again, I was the only PWD in my circles, and I had some trouble being a soloist.  (I wish the diabetes online community had been a thing back then. I could have used the connections.  I’d recommend college students today check out the College Diabetes Network for support.)
  • And I should have had in-depth discussions with my endocrinologist about the effects of alcohol on my blood sugar.  I had to trial-and-error that experience myself, since I was afraid to bring it up to my doctor and also admit what I was doing to my parents.  I wish I had had a better grasp on how alcohol and diabetes mixed because there were some very tricky lows during college that could have been avoided, had I been more educated.

The bottom line?  I survived and thrived, with a lot of effort and a little luck.

How did you prepare for college?  How did your caregivers help you prepare? #amadiabetes

Diabetes Month: Ask Me About My Diabetes.

At 4 am, when I woke up to hang out with my little apple jack to feed him, my blood sugar was 108 mg/dL.  He ate and we both went back to bed.  When I woke up at 6.30 am, my blood sugar was somehow 221 mg/dL.

What the hell happened?!  Usually, breastfeeding makes my blood sugar drop, not rise.  Was there cortisol on board due to not sleeping?  Does my morning basal rate need to be tweaked again, now that I’m 10 weeks postpartum?  Did the potato salad go bad and exact revenge on me?  If two carbs left the station at 4 am, one going into my mouth and the other going into the baby, would they arrive on my meter at the same time?  Bonus point if you show your work.

Diabetes is the ultimate math problem.

This diabetes month, I want to make an effort to “show my work” so that folks both in and outside of the diabetes circle have a better sense of what it’s like to live day-to-day with diabetes.  Which brings me to this:

After posting this image as my Facebook profile picture, hoping people would ask questions about diabetes, my friend Chris Snider (<– always advocating, always inspiring) connected with me and after some quick back and forth, #amadiabetes came to be.

The hashtag stands for “ask me anything” about diabetes and in the spirit of spreading awareness and empathy, we’re encouraging our friends, family, and followers both with and without diabetes to ask whatever questions they have about the life with diabetes experience. The goal is to strengthen our community, educate others, and contribute to a culture of empathy. Check out #AMAdiabetes to see the variety of responses to questions, taking note that, as always, your diabetes may vary.

So feel free to ask away.  Ask me.  Ask Chris.  Ask others.  Ask yourself.  Be all ask-a-rama all over the place and let’s learn from one another and educate together.

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