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Posts from the ‘Diabetes Online Community’ Category

Guest Post: My Magical Disney Moment.

The power of peer-to-peer connections is not lost on the diabetes community.  While insulin remains our strongest medication tool, our mental and emotional health is nourished by connecting with like-pancreased people, making any diabetes burden that much lighter.

One of the most amazing peer support cultures in the diabetes community is found at Children with Diabetes’ Friends for Life conference.  As a board member, I’m extremely proud of the influence FFL has on families affected by diabetes.  Which is why stories like Noor’s are so powerful, because they illustrate how finding your tribe can make all the difference in your health.  

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Born and raised in the Middle East, in a culture where a lot of stigma is attached to people with medical conditions, growing up with T1D was very isolating, lonely and resentful. I was diagnosed at the age of 5, the first 8 years went by smoothly; my mom took on majority of my care load and those pesky hormones still hadn’t made their grand appearance. My doctors put me on a pedestal; I was their most “compliant” patient (yes that was a word that was actually used back then). Puberty kicked in and life as I knew it was over; the hormones took me on a never-ending whirlpool ride. I was embarrassed, tired, exhausted and done with diabetes. I was done with being different. I didn’t know how to explain that to my family and doctor. I felt like I was failing them and they wouldn’t understand, so I decided the easiest way to deal with it is to not deal with it at all. The next 3 years were a nightmare; I was in and out of the hospital more times than I can count. I was in severe DKA 3 times, once so severe the doctors said that I was going into cardiac arrest. I was in a coma for 5 days due to a hypo seizure. My a1c was 13%.

My parents did everything in their power to try and help; they tried soft love, tough love, grounding, reasoning, bribing, yelling, etc. but nothing worked, nothing fazed me. My doctor back home recommended attending the Friends For Life conference in Orlando; he thought it would be an encouraging experience. Little did he know it would save my life, LITERALLY. My parents dragged me kicking and screaming (maybe less kicking and more screaming); the last thing I wanted was to be in a room filled with “outcasts” and “weirdoes,” because you know as a teenager I was a “cool kid.”

The turning point of my life wasn’t when one of the amazing inspirational speakers talked about how he won the super bowl with T1D nor when a world renowned researcher talked about the effects of high and low blood sugars on our organs. It was on a Disney bus on the way to EPCOT with a group of teens who took me in and invited me to join. Kenny, a T1D teen, who was on top of his diabetes game, was checking his blood sugar using his forearm. I asked him the reason behind it and he casually answers, “In case I ever develop complications and need to read braille, I don’t want calluses on my fingertips.”

THAT was my wake-up call, THAT was my holy moly moment, THAT was all it took, THAT was my magical Disney moment.

Fast-forward 13 years; I haven’t missed a single conference, besides one because I was too busy having my twins (I know my priorities are off psht). I am not a mushy cheesy person; sarcasm is my language but brace yourself for this. These people have become my family, my friends for life and my squad. We have been through birthdays, relationships, breakups, marriages, childbirth, graduations, political turmoil (yes that’s a big one), highs and lows together. They inspire me everyday to do better and be better, not only with T1D but also with life in general. They made me comfortable in my own skin (after that summer I agreed to go on a pump after years of resistance); proud of the person I am with my diabetes and embrace it every day. When I’m having a screwed up T1D day, I know I can text them and they “get it.”

When I manage to workout and stay in perfect range they “get it” and understand what a huge deal that is. When I send them a screenshot of my dexcom with 2 arrows up after eating pizza, their “but that was worth it” response lets me know they “get it.” They have normalized this disease; suddenly I wasn’t alone, an outcast, or scared. They are nurses, doctors, advocates, athletes, chefs, photographers, businessmen/women and the list goes on. They proved to me that you can be anything you want to be and be amazing at it, in spite of the struggles.

That is the power of a community.  This is what they meant when they said “it takes a village.”

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Noor Alramahi has been living with diabetes since the age of 5 and since she wrote her own bio, I’m going to paste it here in full.  Mostly because she adds “had twins” as this NBD sort of thing when it is SUCH a BD.

“I’m a 28 year old curly brunette who’s in love with Tiramisu and Justin Timberlake. I was diagnosed with diabetes at the age of 5, since then I have learned to play piano, played varsity soccer, competed in horse jumping, travelled to more than 19 countries, had twins and can’t think of one thing that having diabetes has stopped me from doing. I am married to my best friend and have 2 year old boys. I have been part of  CWD FFL staff for the past 8 years, I also help run their social media platform. Five years ago CWD FFL inspired me to leave my corporate job and join the T1D nonprofit world and focus on helping people. I work as the community manager at Carb DM and am the co-founder of T1D females group in the family planning, pregnancy and post pregnancy phases called Sugar Mommas

Click to make a donation!

Thanks for sharing your story, Noor!

If you’re interested in seeing how Children with Diabetes can change your life, check out the website and consider coming to a conference.  If you already know how Children with Diabetes can change your life, please consider donating to support the organization.  And if you’d like to share your story about how the support of CWD has influenced your life, please email me at kerri (at) sixuntilme (dot) com.

Guest Post: DiabetesSisters Voices.

When it comes to research related to diabetes, I want to support those efforts as much as I can.  The power of sound data, plus patient stories, can move the needle on therapies, treatments, and empowerment for people living with diabetes.  Today, I’m lending my website to my dear friend Karen Graffeo, who wants to share some information on the DiabetesSisters Voices project.

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What do you think of when you hear the words “diabetes research”? To be honest, until recently I thought of really smart people wearing lab coats. They might be trying to cure diabetes or working on diabetes prevention. They could be researching better treatments or they might be running clinical trials. And I also wondered if they might be researching things that don’t really matter to me as a patient. But when I thought about diabetes research, I never imagined it could include connecting with other women with diabetes from the comfort of my own home. And often while still wearing my pajamas!

My perception of diabetes research changed when I became part of the DiabetesSistersVoices project. DiabetesSistersVoices is an online community that combines forums with research. Members use the forums to ask questions, share experiences and search for resources. We chat with each other about what is important for improving our health and well-being, and our discussion will later help guide the research community.

Anna Norton, CEO of DiabetesSisters, explains more about this project. “We created DiabetesSistersVoices through a collaboration between DiabetesSisters, The Johns Hopkins University, The University of North Carolina, TrustNetMD and our Stakeholder Advisory Board of women and diabetes advocates. This project was funding through an engagement award from the Patient-Centered Outcomes Research Institute (PCORI). Our goal is to provide an interactive, engaging website for women with all types of diabetes. The conversations that happen will help us determine the unmet needs and unanswered questions that women with diabetes have.”

At the end of the project, the top research and health care questions will be collected for a final report: The Patient-Centered Women’s Health and Diabetes 10Q. This report will help policy-makers, advocates, researchers, clinicians and other groups to better understand what priorities in research should be.

I’m serving as moderator of the site, and it’s really exciting to see all kinds of conversation and questions being discussed.   But it’s important to have as many voices participating as possible, so we can truly represent the needs of all types of women with diabetes. If you are an adult female in the United States and have been diagnosed with type 1 diabetes, type 2 diabetes, pre-diabetes or gestational diabetes, you are eligible to participate in this study. Go to our website www.diabetessistersvoices.org and click “Register”. Once you’ve completed a screening and an online consent form and survey, your account will be approved and you can join the conversation and help drive important research.

I hope you’ll register and come connect with us. We need your voice and your perspectives in our discussions. And you don’t even have to change out of your pajamas first!

Find DiabetesSistersVoices at https://diabetes-sisters-voices.org. Follow the project on Twitter at @ds_voices.

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Thanks for all of this information, Karen!!  I’m signing up today. 🙂

Participate in Research: Peds to Adult Endo Care.

As an adult with type 1 diabetes who, a hundred years ago, transitioned from pediatric care to adult care, I have a ton of interest in how that process takes place. There are so many factors that play into making that transition effective.  Does the child have a chance to talk one-on-one with their doctor as they get older?  Is there room for group visits in the pediatric space to help transition to adult care?  Is independence and responsibility tossed to the kid all at once or is it a gradual process.  And hey, does the waiting room inspire confidence in peds while the waiting room in the adult clinic generates despair?  (Oooh that last one.)

Growing up with diabetes includes learning how to take the baton of self-care and run with it, and everyone does it differently.

Always working in pursuit of improved patient outcomes, Drs. Tamara and Sean Oser, along with their colleague Dr. Kanthi Krishna, are studying the process of transition from pediatric diabetes care to adult diabetes care. I cannot wait to see what comes of this study and I hope lots of SUM readers click through to see if they qualify to participate.

tl;dr: To see if you qualify and to participate in this study about the journey from peds endo care to adult endo care, you can access their survey here:

HERE IS THE SURVEY!  CLICK ON MEEEEEEE!

Feel free to share this survey with your PWD peers so we can help improve quality of life and health outcomes for our community.  And if you’d like a psychedelic Santa gif, you can have that, too.

Muted.

Ahh bullet points.  Ye be the only(e) way I can process things at the moment.

  • I don’t have a lot to say over here lately, and there are a dozen different reasons for that.  One is that the new baby kiddo keeps me extremely busy, what with his cluster feeding and chatty ways, and also the fact that he is still not much of a nighttime sleeper, with his sleepless nights becoming my sleepless nights.  Which translates into not a lot of creative brain power during the daylight hours.
  • (But holy fuck am I creative at night.  I make up songs on the fly, can produce ounces of breastmilk without a second thought, and have taken to texting writing ideas to myself with one hand while hugging Guy Smiley with the other.  The problem is executing on these ideas once the sun rises, because it’s then that I fall apart.)
  • The baby is getting much bigger, though, and even though we’ve had some issues getting him to gain weight (not a problem now – more on that tomorrow or Friday), he’s thriving perfectly now.  He has also entered that super smiley/finally giving feedback stage, which I love.  The baby grins and gurgles are my favorite.  He sounds so much like his sister at this stage, and yet he’s so distinctly himself.  His smile lights up the room, even when he’s spitting up into my freshly washed hair.
  • My kids are my focus these days, which keeps my heart full but my blog kind of empty-ish.
  • I’m also reluctant to get political in public, mostly because the diabetes community is united by busted pancreases and political discussions have the potential to cut our crucial community in half, but the election did not go the way I had hoped and I have grave concerns about health insurance, safety, and social issues these days.  This is contributing to the maelstrom of thoughts in my head, and the CGM frowns on my desire for Tylenol.
  • The election circus also sort of sucked the wind out of my sails in terms of diabetes awareness month activities, as well.  I’m having a difficult time focusing on the diabetes community when the country as a whole seems to be imploding to a certain extent.  I wear my blue circle pin when I’m out and I gave a presentation at a local hospital system last night, but for the most part, I’ve felt quieter than normal these days.
  • And another reason for my silence is that diabetes isn’t fun to talk about lately.  Back when I first started blogging, I would share a lot of the minutiae because I’d never had the chance to get that sort of stuff off my chest before.  Talking about a rogue low blood sugar that hit while I was in the shower?  That story came out easily.  But all of those diabetes moments feel redundant lately.  Yes, I was low.  I was high.  I was frustrated.  I was burnt out.  I was empowered.  I made steps forward in some areas, backwards in others.  It isn’t interesting to me at the moment.  When I think about diabetes, it’s this hamster wheel of the same tasks and the same emotions earning similar outcomes.  I’m still living with this disease, still trying to manage it, still having good and bad days.  Documenting those moments isn’t coming as easily to me anymore.
  • Maybe it’s because of my increased desire to keep more things private, even in the health space.  I looked back at some of my past blogs and saw that I’d chronicled a lot more of my pregnancy with Birdy than I did with my son.  I definitely blame infertility and fear of losing another pregnancy for that silence, but even now that my son is out and safe, I’m still reluctant to share a whole bunch about him.  I have a monthly letter than I’ve been writing to him (there’s two done already and a third one is in my mental queue … maybe I’ll feel up to sharing that third one here sometime) but I like keeping those in his email account (password to be given to him when he’s older).
  • Maybe this privacy surge is a result of being older.  Or tired.  (Or maybe being tired is a result of being older.  See also: non-sleepy cute infant person)
  • I love the diabetes community – truly love it – and I remain a big fan of blogging,  but maybe long form blogging is starting to shift a little bit.  Lots of activity on Instagram and Twitter (never got into Snapchat – my luck, the cat would walk by and puke while I was recording a video or something), but the long and winding blog posts are harder to find these days.  Do they require more effort to read?  I keep seeing things on Medium marked as “long reads” that are also marked as “8 minutes” and that sends me into “get off my lawn” mode because is eight minutes really a long read?  Does that means all books are becoming pamphlets and Jodi Picoult will suddenly start writing her tomes in tiny tattoo form?
  • I think I’m a little tired, overall.  Tired of diabetes (post-pregnancy burnout in full swing, thank you very much) and tired from adjusting to the arrival, chaos, and joy of a newborn baby. (I think there’s some guilt half-baked into that, because I wanted my son so much that I feel a little guilty about some of the exhausted frustration I’ve felt.  I could not possibly love him more, and I simultaneously could not need a nap more.)

Things will settle down.  I’ll post here as time allows and as inspiration strikes.  Diabetes will always be here, right?  It’s okay to take a breather from talking incessantly about it.

90% of my day is this snuggly.

A photo posted by Kerri Sparling (@sixuntilme) on

#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

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