Diabetes Blog Week 2013 Day 5-Freaky Friday

Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?

Super easy question for me: I’d choose celiac disease. I am so incredibly passionate about health, overall wellness and food. I’m such a foodie, and I love finding new ways to reinvent staple dishes, create new ones, and experiment, using healthier, different and a variety of ingredients. I love cooking for friends and family. I have a bumper sticker on my fridge that says, “Love People, Cook them Tasty Food.” I’ve been living the Paleo lifestyle for almost 2 years now, so I am gluten free as a result of that. There is nothing that I love more (okay, maybe a couple things) than being in the kitchen cooking and having fun with food. I find it so utterly calming and relaxing-which is apparent in the way my blood sugar reacts, it plummets as soon as I start getting the ingredients out 🙂

It’s my thought that with anything chronic, it isn’t about what you can’t have, but what you can, and working with that.

Yes and no; I don’t think the DOC specifically has affected the way I treat friends or acquaintances living with other medical conditions. Are you familiar with the color personality tests, where someone is designated one of four colors based on certain characteristics? I’m blue to the core, and always have been. Nurturing, trusting, empathetic, sensitive and always put others above myself, so I have always been probably over-sensitive and extremely observant to others needs. However, what the DOC has provided me, is an appreciation that we all come from different backgrounds, with varying life experiences that help shape who we are. When I didn’t have healthcare at diagnosis-who was there? The DOC. Having a chronic medical condition isn’t something to be ashamed of, but something to fuel you to help others, network and connect. I have some friends in the DOC that I consider close friends, that I know are there if I need them, and I haven’t even met them in person. This is pure awesome.

Diabetes Blog Week 2013 Day 4-Accomplishments

We don’t always realize it, but each one of us has come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you’ve made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small – think about self-acceptance, something you’ve mastered (pump/exercise/diet/etc.), making a tough care decision (finding a new endo or support group/choosing to use or not use a technology/etc.).

I think each person’s diabetes is their own, and is ever evolving as they experience the challenges that life brings. Living with type 1 diabetes often requires micromanagement, which results in many accomplishments, it’s hard to choose just one. There are daily, simple wins, and there are much larger wins, each is unique and evokes different emotion.

For me, my most pronounced accomplishment has been acceptance. I was diagnosed at the age of 25 in 2006, and for about 1 1/2 years post diagnosis, I was depressed and wanted to run away and hide forever. I didn’t like my new life, and I wanted my old one back. I didn’t like the demands, the new way that my body felt and the things I experienced, my sudden twisted relationship with food, the doctors appointments, injecting myself, feeling crappy from blood sugar swings, the fear of complications later in life, feeling ashamed and embarrassed, and having to essentially start over and re-learn everything I already had in life. Diabetes brought a whole new dimension and I felt completely broken down.

And then, the Navy moved us to Virginia from Puerto Rico and I found an insulin pump support group. I thought long and hard about whether or not I was ready to put myself out there. I finally decided one evening I was going to force myself outside of my comfort zone and attend. I distinctly remember meeting Heejin, who was outspoken, had lived with type 1 diabetes for so long, and was still asking questions. I thought to myself, I can totally do this! I remember driving home from that meeting and being so excited that I’d made a lifelong friend, but also found others that were just like me, that understood, and that I was not alone anymore. This has since snowballed into the complete opposite feelings I had for those first 1 1/2 years, and am super involved with diabetes groups, organizations, etc.

It hasn’t been an easy road, but a road that has been well worth it and has taught me more about myself than I ever thought possible.

Diabetes Blog Week 2013 Day 3-Memories

Today we’re going to share our most memorable diabetes day. You can take this anywhere…. your or your loved one’s diagnosis, a bad low, a bad high, a big success, any day that you’d like to share.

Memories. There are so many memories I have over my 6 1/2 year diabetes life, they’re hard to quantify, and even more difficult to write about. The memories run the gamut from pain, confusion, accomplishment and happiness. But the most vivid memory was the day I was diagnosed with type 1 diabetes. I wasn’t ill, which enabled the memories of the day to remain in tact down to every last detail that transcribed. Looking back now, perhaps diagnosis day was so painful, because I remember what it was like to live without type 1 diabetes for 25 years of my life. I remember 25 years diabetes-free going right out the window in the blink of an eye, and being forced into a new life. I remember our marriage being diabetes free for 4 years. I remember what it was like to live without the mental burden of type 1 diabetes, and being carefree. It’s an entirely different perspective when you experience a late-in-life diagnosis, and is one more thing in addition to everything else that type 1 diabetes demands, I carry around with me.

I’ve posted before about my diagnosis day several times before, here on my blog: Diagnosis of Type 1 Diabetes , and as a guest post on Six Until Me, Guest Post: Diabetes for Christmas.

Diabetes Blog Week 2013 Day 2-Diabetes Petition(s)

Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) – get creative!! What are you trying to change and what have you experienced that makes you want this change?

Whew! I can think of about 4 million petitions I’d like to write, but they can just about all be summed up by one topic: stop making a business out of my disease and it’s [potential] complications, and cure it. It’s disheartening when I read facts about how much money is spent on diabetes in the United States each year, when there are so many more productive ways that we could be spending research dollars. I wish there weren’t so many “politics, who knows who involved,” and it was more “bare bones, let’s get this done.” Maybe it is that way and I’m just not aware, but I don’t think so.

There are other petitions I’d like to write, to my devices or the drug I use to keep me alive. In general I am very thankful for the technology which enables me to manage my diabetes in a more healthy way, but it’s not like I’m dying to wear medical devices attached to me and take crappy drugs, therefore, another petition I’d like to write is to dear old insulin:

Dear Insulin,

First of all, I’d like to thank you for keeping me alive. While I appreciate (obviously) that you allow me to use you to stay alive, you kind of suck and should be further advanced than you are. You haven’t changed much, and now is the time. Managing diabetes is difficult enough, but when I have to take you [insulin] an hour and 15 minutes prior to eating a banana-it’s effing annoying and makes managing diabetes even more burdensome. I like bananas and potassium, just let me eat the damn thing! And then, dear insulin, where do you go when you don’t work? Are you lazy, are you crystallized in my pump site, are you just hanging out in scar tissue, or can you STEP IT UP FOR THE LOVE OF ALL THINGS DIABETES, I’M HUNGRY? And why do you sometimes work so well? Also, why are you only good for 28 days? You have no idea what a nightmare this is for refills, insurance hassles, pharmacists that don’t understand how to fill insulin prescriptions, etc.

Seriously, insulin, you’re slow, inconsistent, and just down right annoying! I petition to improve you.


Hungry Type 1

Diabetes Blog Week 2013 Day 1-Share and Don’t Share

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?

Diagnosed in adulthood, and having lived with type 1 diabetes for 6 1/2 years, I feel as though I’ve been on auto-pilot for roughly the last 3 years. I don’t really worry much about my diabetes, it is what it is and tomorrow is a new day. Still, there are times when it just creeps up on you in the slightest of ways and you’re overwhelmed before you know it.

Fortunately, I have a great endocrinologist, and although I only see him once maybe twice a year, I know if I need him, he’s there. I still get bloodwork 3-4 times per year, ordered by my wonderful primary care manager to keep myself in check, and she also will send prescriptions if I need them. I’m lucky.

Though, if my team could peer into my diabetes life, I think I’d like for them to live in my shoes for the 1,440 minutes in the day that I’m thinking about my what my blood sugar is and what it’s doing…where it’s going, so they could see and feel how all-encompassing and totally consuming type 1 diabetes is. Although I’m on auto-pilot, it’s auto-pilot with everything that type 1 diabetes management demands slipped in anywhere and everywhere possible.

I’d like for my healthcare team to manage their health with everything else that life throws at them daily. Consistently maintaining their blood sugars between 80-180 the entire day (and the extra effort if it ventures beyond those Dexcom lines), while exercising once and maybe even twice, commute to and from work in rush hour traffic, have a stressful day at work, then head off to a meeting outside of work, still cook three healthy meals each day, then change their infusion site before bed, only to find that the new site hurts, having to change it 2 more times. And still be mentally coherent and stable at the end of it all. I’d like for them to see that management requires so much that they do not realize, and can’t possibly imagine without having lived with the disease.

I can’t think of anything that I wouldn’t want my healthcare team to see. For those that don’t know me, I’m a pretty open book, willing to share and connect to possibly help anyone I can.