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Guest Post: My Sister Has Diabetes

A diabetes diagnosis doesn’t just affect the life of the person who is diagnosed … diabetes, for better or for worse, is a family affair.  I didn’t think about the influence of diabetes on my siblings until I was older, and I wish we has talked about it at home more.  Which is exactly why I’m honored to host a guest post from Grace Rooney, who wrote a book from the perspective of the sibling of a PWD.  Read more about why she wrote her book and how you can grab a copy of your own!

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Hi guys, my name is Grace, and I’m excited to be a guest blogger for Six Until Me. I have an older sister, Paige, with type 1 diabetes who was diagnosed 17 years ago.

Growing up, I was aware of carbohydrates, blood sugars, and insulin, things other kids my age didn’t have any idea about. My parents’ attention was often turned towards my sister, and I was left feeling confused and scared. My parents and my sister had a lot of resources to help them navigate the daily challenges. However, we were never able to find any support for me. When I was six, I wrote a book called My Sister Has Diabetes and How That Makes Me Feel. It was a way for me to express myself and my emotions, but at that time, my book was just for me. I wasn’t aware that it could become a resource that would benefit other people.

I think growing up in the shadow of diabetes gave me a unique perspective. I am now 19 and care about diabetes advocacy, especially for siblings. Two years ago I self-published my book and started a nonprofit called Support for Siblings.

This year I was fortunate enough to be a first timer at the Children With Diabetes’ Friends for Life Conference in Orlando where I tracked down Kerri and introduced myself. She was gracious and hilarious, as anyone who reads her blog knows, and she invited me to write a guest blog post to introduce another perspective on living day to day with T1D. Although I don’t have diabetes, it is very much a part of my life.

At the conference I partnered with the “Orange Team” who works with the kids who don’t have diabetes but whose lives are still affected by T1D, just like me. There I read and gave out copies of my book to siblings and parents. Interacting with the kids, sharing my story, and hearing theirs was inspiring and validating. Many of the kids I met experience similar situations and emotions that I had. I remember growing up wishing there was someone who could relate to me and my feelings, and now I want to help siblings who are scared and confused like I was.

My goal is to continue to get the book to as many type 1 siblings as possible. If you weren’t at the conference but know someone who may benefit from my book, you can find it on Amazon.

I’d also love to hear from you at supportforsiblings@aol.com. Out of the struggle and pain and longing to sympathize with my sister, I have become an advocate and hope I can provide support for siblings.

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Thanks so much to Grace, for making a difference in the world for PWD and their families.  You can order a copy of her book on Amazon by clicking here.

 

Murraybetes.

Mornings start with graph checks and then we’re off to live
Not all D things are solid, but we continue, we forgive.
Lots to tackle, lots to manage, lots to do in this narration
Though efforts might end up a little bit Lost in Translation

Details of the day go by in a flurry
But I’m blocking all the chaos like Rushmore Bill Murray.
One thing stays the same, one thing’s on repeat
I’m always checking numbers to see how much I’m sweet.

It’s a cycle that I’m stuck in, like it’s always Groundhog Day
With the checking and the poking and the insulin melee.
“I’ve got you, babe,” says my panc and it’s right, it’s our kinship.
So I stick to the D program, pseudo-panc right on my hip.

Tracking lows that feel like pranks, man.
All the juice that I just drank, man.
And the rebound after I tank, man?
I bust those highs like Peter Venkman.

Searching for the perfect mix of things that bounce my BGs
But that mix it changes daily; that’s the trick of diabetes.
Pre-diagnosis numbers? How I miss you.
But I’ll keep working, searching like Steve Zissou.

It’s a circle of the weirdest kind but no rest for the weary.
The repetitive cycle of this stuff can feel a little dreary.
But why bother? Why continue? Why give this constant f*ck?
Because we’re worth it. Our lives matter.
And I’m guessing dead would suck.

The One About Animas.

[I have a disclosure about Tandem.  I had a previous disclosure about Animas.  Please read my disclosure page so you are aware of my bias.]

Yeah.  I know the news cycle is 15 seconds long now and many people have already moved past the fact that Animas is closing shop, but I heard about it while I was on vacation and haven’t had a chance to really process the news until recently.

Two years ago, there were six pumps to choose from:  Tandem, Animas, Medtronic, Insulet, Roche, and Asante.  Three of them are now gone.  (Also, rest in peace, Cozmo.)  With Animas exiting, Tandem, Insulet, and Medtronic are what remain in the US market.

This sucks for several reasons, but the main one for me is that diabetes is not a choice I made.  I am not a big fan of this disease, and taking insulin isn’t something I love doing.  However, I need insulin to survive, and pumping insulin results in better diabetes control for me.

When I was diagnosed, pumping wasn’t being pushed by my endo, as it was fairly new.  I went on my first insulin pump back in 2004 and it was a Medtronic 512 (smoke gray and reasonably badass for its time).  I used that for a few years, then switched to a silver Animas Ping and spent several years on their pump, then popped over to Tandem and have been t:slimming since.  All of these pumps made taking insulin easier, for me.  And each one of these pumps, I chose.

An insulin pump is an intimate device for people with diabetes.  It goes to school with them.  Goes to work.  Goes to bed.  This thing is literally by our side 24/7, so it needs to fit into our lives.  I remember choosing my first insulin pump and pouring through the brochures excitedly, as if I were picking out my first car.  Yay, the colors!  Yay, the tubing options!  Yay, the infusion sets!  Weird things to say Yay! about, but it was kind of nice to do some choosing when it came to diabetes.  Having a choice made me feel like I had a bit more control over this disease.  Can’t unchoose diabetes, but can choose the devices I use.  I appreciate that.

This whole Animas closing thing is rotten because people chose that pump.  That’s the pump they wanted to bring all over the place, the one they decided would fit into their life.  Having yet another choice removed/forced sucks, and I’m not sure what can be done to preserve the few choices we have left.

If you’re using Animas currently, you can switch to Medtronic but you shouldn’t feel forced into using Medtronic. Tandem and Insulet are options, even under UHC (although if you have UHC, it may require some paperwork/PITA hassle/moments when wine is necessary). Medtronic makes a product worth using, but it’s not the ONLY product worth using, and patient choice MATTERS.  Take some time to look at the remaining choices and make a decision that works well for you.

clicking the logo will take you to their Animas switch information

clicking the logo will take you to their Animas switch information

RIP, Animas.  Your pump saw me through my pregnancy with my daughter, and also through a handful of swim up bars – both scenarios are real life.  Thanks for making those life moments easier.

Do You Hate Diabetes?

I asked some friends on Facebook if they hated diabetes, and the answers* were as varied as the folks responding:

  • “I hate it, the hassle, and the complications but I do not hate the growth amd strength I’ve achieved or the family I’ve gained because of it.”
  • “I don’t hate it as a thing but it does annoy me. At the same time I am very thankful that if I must have a problem of this type at least there are good doctors and advancing technology to help me live a normalish life.”
  • “I didn’t used to hate it when I was younger-I think because I had camp. But at this point, to be honest, I do tend to hate it.”
  • “Do I hate diabetes in general? Yes probably … I hate that it causes so much pain and suffering all over the world. I hate that people die from it and that companies exploit us living with it to make crazy profits. But do I hate living with it? Yes I dislike it very much.. and at times in rage I would say hate. But diabetes has opened so many doors for me and taught me a great appreciation for life. It’s easy for me to say that however within my environment. So who am I to judge anyone for saying that they hate it!”
  • “I don’t hate it, but it makes me tired and exasperated too often.”
  • “I don’t hate it. When I think about the ailments some of my other friends/acquaintances have, I am thankful this one isn’t a death sentence.”
  • “It’s a love/hate relationship. I wish none of us had it, or had to deal with the daily demands of it, and all the bullshit that comes with it. That’s the part I hate about it. But without it, I wouldn’t have met many of the people that make all the difference in my world, what I’m going back to school for wouldn’t be as clear, and my profession wouldn’t be as meaningful to me and (hopefully) others. I might not have as much empathy for others if I hadn’t lived my whole life with diabetes. Diabetes keeps me from being an asshole. Mostly.”
  • “I don’t hate it. Hate stirs up sadness, anger and emotions of feeling trapped. Hard to work with it if I hate it. But I wish to the depths of my core that I didn’t have to face it every day; every minute. It’s hard. It’s horrible. But it’s not hate.”
  • “I’ve always wished I didn’t have it (obviously), and I hate what it’s done to my body and how much it’s cost in both money and effort, but I’ve never hated the disease itself. It’s just part of who I am.”
  • “On some days or in certain moments, YES with a passion. However, most of the time, I’m kind of indifferent about it or it can feel like a minor annoyance or inconvenience. On rare occasions I actually feel that it gives my life more meaning.”
  • “Every damn bit of it, except for seeing how exceptional my daughter is in spite of it.”
  • “On an overall day I don’t hate it but when I stop to think about the expense or the guilt when I pig out on something or thinking about potential long term effects I hate it. I also hate it when it interrupts a full night of sleep which is does most nights but during the day I’m not walking around with hate on my mind.”
  • “No. Hating takes so much energy, emotion & attention. I already give diabetes so much of those. I don’t want to give it more.”
  • “No time for hate. To busy being SO ANNOYED.”

  • “I feel hate is too strong a word. I don’t enjoy living with it but that’s the thing… it lives with me not in place of me. It doesn’t stop me from particular events in life but it does have me consider them more. For instance I have never had an A1c lower than 8% and therefore have never been given “the go ahead to ttc ” but in saying that it won’t wholly define our choice, our timing nor the outcome.  It can be hard, tiring and frustrating but it isn’t worth hating.  I probably wouldn’t be the person I have become, without it.”
  • “Hate maybe isn’t the right word…but I certainly resent it. I get that people appreciate the community and relationships they’ve made because of diabetes, but didn’t we seek those things out as a way to cope? Just think of what we could have done if we hadn’t felt the need to find that support. I doubt I’d have a spotless medical record without diabetes, but starting with a level playing field would have been nice.”
  • “Well, I don’t hate mine, but I kind of hate other people’s. Like the fact that so many people here hate it makes me hate it. But if it were just mine, I wouldn’t be that mad about it.”
  • “I do not. I hate many things about it but, at this point, it’s all I know. If a cure were found tomorrow, I would be utterly confused.”
  • “Nope. I barely think about it. It’s just something I do. Part of my daily routine.”
  • “It is bits and pieces of the fabric of my girls. I wish terribly, fiercely, sometimes desperately that it wasn’t a part of them or anyone else. But hate … if I am honest, I can’t hate it. That emotion would tear me up. I have to focus on being strong for them. So I focus on the things that we can control and I work hard to make it as easy, ignorable and stress free as possible.”
  • “Hate is such a strong word. My feelings towards Diabetes aren’t that strong. I have stronger feelings about people who are hateful and disrespectful. Diabetes certainly takes a back burner to that. I would certainly be ‘me’ without Diabetes and it would be amazing if it were obsolete but I’m not going to put that much thought into something I cannot control.”
  • “Sometimes. But feeling constant hate would make my life a lot more stressful I think. Most of the time we co-exist with various degrees of annoyance. Sometimes I would like to punch it in the throat.”
  • “More then I could ever explain.”
  • “Nope. Met a lot of great folks in real life and online due to it. It’s something that I deal with on a low level constantly and so it doesn’t really flare up to a major pain for me. Everyone has something. I’d rather have something that is manageable, invisible to the world, and commonly understood by the general public on a basic level.”
  • “I don’t hate it. I have some semblance of control over it and at least technology and management is improving drastically all the time. I have another medical condition that is a total wild card, that while it (probably) won’t kill me, could make impossible to walk or use my hands at some point, makes me much more physically tired than diabetes, and makes me physically unable to do certain things. And has far far less chance of getting better or being cured. If I could “just” have diabetes, I’d totally do that.”
  • “Yes. I’m not going to sugarcoat that one. But I don’t hate it enough to let it cripple me/us. I don’t give anything that much power over me.”
  • “Sometimes. I hate that there are many aspects of life I can’t be spontaneous with, and that some times I plan and nothing goes to plan. I hate that I constantly think about health insurance and the role that diabetes plays in my financial stability. There’s a daily, if not hourly, fluctuation that exists when it comes to feeling positive, neutral, and negative about my diabetes.”
  • “Well, I sure as hell don’t love it!”

For me, after 31 years of type 1 diabetes, I don’t carry around a lot of anger or shame about diabetes, but I don’t harbor warm, fuzzy feelings.  I don’t hate it. I don’t like it and would get rid of it in a heartbeat if given the chance, but I don’t spend the day loathing it. (Some days, yep.  I can’t pretend to be happy about this condition.  Especially now that I’m getting older and Things are Happening that make me wonder, “Hey, is this diabetes?” or “Hey, is this just the aging process?”)

But I think that’s because it’s mine and mine alone. If one of my children had diabetes, I’d hate it seventeen different ways.

The responses from people on Facebook were so diverse, just like our community.  And I think responses could also change depending on what’s going on in the world, in their lives that day, or what result might have just stared back at them from a glucose meter. No “right way” to feel. Whatever way you feel is right.  Diabetes is part of every day, and the emotional influence is has on our lives is rarely discussed but nonetheless pervasive and constant.

But I’m glad we’re starting to talk about it.  No matter how we feel about diabetes on any given day, the community that’s bloomed around this disease continues to inform, inspire, and redefine living with diabetes.  That’s something worth loving.

 

 

 

(* All of the following bullet points are from comments on th FB thread.)

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.

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