Changes – #dblogweek

Dblog week buttonToday let’s talk about changes, in one of two ways.  Either tell us what you’d most like to see change about diabetes, in any way.  This can be management tools, devices, medications, people’s perceptions, your own feelings – anything at all that you feel could use changing.  OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes.  Were they expected or did they surprise you?

What would I like to see change about diabetes?  I want to see all the changes to care they talk about in this JDRF video. Artifical pancreas, encapsulation, smart insulin. I want people with diabetes to have choices for excellent, automated care and affordable access to it.

This is why we walk and educate and raise money. Yes, I want a cure for my son and for everyone with diabetes. But this research is much more likely to come to fruition in the near future.  I’d love to send Benny off to college (eight years away) with one of these therapies.

 

Clean It Out – #dblogweek

dblogweek bannerYesterday we kept stuff in, so today let’s clear stuff out.  What is in your diabetic closet that needs to be cleaned out?  This can be an actual physical belonging, or it can be something you’re mentally or emotionally hanging on to.  Why are you keeping it and why do you need to get rid of it?  (Thank you Rick of RA Diabetes for this topic suggestion.)

Every closet in my house needs cleaning! I’m not a pack rat, but I am a bit… cluttered.

My diabetes cabinet is in pretty good shape right now (for me). Although, if everything fits it’s probably time to order more supplies.

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I cleaned it out last year, can’t you tell?

Somehow, all this used to fit in there too:

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I even found these old brochures from when we were looking at pumps in 2007!

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Spoiler alert: we went with the Animas 2020. Now we use the Ping. This summer we’ll decide to either stay with the Ping or switch to the Vibe. Eight years pumping already!

Hidden in that cabinet above are a few things I know I’ll never clean out. My 13-year-old daughter made that orange mug when she was 6. The handle broke, but I’m keeping it. And Benny’s first, tiny medical ID bracelet is on the top shelf. He was three when we put it on and he’s only taken it off to switch to a bigger size.

Going through this cabinet is usually just about grabbing some supplies and going on with the business of diabetes. But as I look more closely I realize, as diabetes is also linked with my kids’ earliest childhoods, some mementos are hard to let go.

 

 

 

 

 

 

 

 

 

Keep It To Yourself – #dblogweek

Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?  (This is not an attempt to get you out of your comfort zone.  There is no need to elaborate or tell personal stories related to these aspects.  Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.) (Thank you Scott E of Rolling in the D for this topic.)

Dblog week buttonAs a parent of a child with diabetes I’m in the odd situation of writing about something that’s an inseparable part of my life, but isn’t actually mine. My life was changed the day my 23 month old was admitted to the hospital, but that’s because his life would never be the same.

I began blogging one month after Benny’s diagnosis. I’ve always loved to write and I was already on the radio talking about everything else. Sharing my family’s journey with type 1 diabetes seemed natural and right. It also helps me process all the crazy things diabetes brings to our lives.

Each post brings decisions. How much to share? How much to keep private? A good example is Benny’s A1C results. I used to post them, I don’t anymore. That number is my son’s private health information. I do share momentary blood sugars and lots of ups and downs, but I’ve decided to draw the line there. The A1C is a loaded number for many of us. Pride, shame, dread, whatever. Keeping it private helps make it less of an emotional issue for me. And I think that makes a difference to my son.

(I’m also guessing that as he hits his teenage years his A1C is going to up. I don’t want to be the mom who went from bragging about amazing numbers to the one who feels ashamed and embarrassed, asking herself “what happened to my awesome kid?” Of course, the kid is still awesome, but I’ve seen those posts. It’s not pretty.)

When I share online, I try to remember that my child’s diabetes is not mine. Our experience is tied together but it’s not entirely my story to tell.

I Can – #dblogweek

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This is Diabetes Blog Week. Always fun but a little overwhelming (not just writing but trying to read all the great posts)! Today’s prompt is “I Can…”

In the UK, there was a diabetes blog theme of “I can…”  that participants found wonderfully empowering.  So lets kick things off this year by looking at the positive side of our lives with diabetes.  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?  (Thank you to the anonymous person who submitted this topic suggestion.)

I can….

Send my young child with type 1 diabetes to regular overnight camp. For a month. If you’re reading this and you don’t have T1D in your family, you probably just shrugged, but I heard that gasp from the diabetes community.

Sending kids to diabetes overnight camp is a big deal for many parents. It often represents the first time a child has been away from home for a few hours, let alone a week or two. There are endocrinologists, diabetes educators and much of the staff has type 1 diabetes. These people know what they’re doing.

Regular sleep-away camp is different. They have medical staff, but no one specializes in T1D. Many of these people have never seen a pump before and, even if they have, chances are they’ve never changed a site or filled a cartridge. There’s no box on the camp health forms for “type 1 diabetes.”

But, camp is a family tradition for us. My dad went. So did I, my sister and my husband . Different camps but all for six to eight weeks every summer. Camp taught me to be independent, to find out more about who I am away from my parents, and how to take a really quick shower. I still remember the wheel of chores in the cabins and the chants and cheers of color war.

My daughter was the first to continue that tradition. Every year she’d come home and tell her little brother how amazing Camp C is, always adding, “You can come with me when you’re eight.” I never really thought we’d do it. I couldn’t imagine how. But when he turned eight he wanted to go. I tell him diabetes won’t stop him. How could I let it hold him back in this?

It wasn’t easy and it’s still not simple.  That first year I started working with the camp in January. They sent me the menu and I provided all the carb counts. We worked out a system for him to check in with the (excellent) medical staff. An Animas rep with T1D even did an education session. We still go up a day early and meet with his counselors and the nurses.  I am amazed and appreciative of the effort that goes into making this a great, safe experience for my son.

There are two older boys at this camp with T1D and at least one counselor (I only know about her because I spotted the Omnipod during a camp video). I like knowing we’re not the only ones, but Benny, as a rising third grader that first year, is still their youngest T1D camper. He does every site change and every blood sugar check while he’s there. He’s learned that there’s a lot of ignorance about T1D, like the nurse last summer who asked him what his A1C was before letting him have ice cream! He’s also learning how to handle those kinds of situations politely (unlike his mother who might have asked that nurse her weight & cholesterol before letting HER have ice cream).

Do I worry? Of course. I call a couple of times that first week. I wake up in the middle of the night and decide this is the dumbest thing we’ve ever done and vow to bring him home the next day. But then I how much he loves it. That first year when we picked him up, he said he didn’t want to leave. I also remember that his endocrinologist and the staff at diabetes camp encourage us to do this. Their support helps give me the confidence to let my son go off and gain his own.

Just last week a mom of a boy who goes to camp with Benny called me up. He was just diagnosed with type 1.  “Can he still go to Camp C.?” she asked. I’m so glad I was able to say…

He can.

Just hanging out at camp, playing some gagaball with a pump and a CGM on his belt!

Just hanging out at camp, playing some gagaball.           (pump & CGM on his belt)