💙November is Diabetes Awareness Month!💙

It’s my goal everyday this month to bring awareness and share my story with this disease.

In 1995 at 8 years old I was diagnosed with type 1 diabetes. Type 1 is an autoimmune disease and is NOT caused by any lifestyle choices.  My type of diabetes only represents 10% of the diabetic population and contrary to popular belief, you can be diagnosed with type 1 at ANY AGE although usually you see it in childhood.

The day I was diagnosed was a whirlwind. It was a Monday. My mom kept me home from school to take me to the doctor because she already suspected there was something happening. She wouldn’t let me eat or drink anything besides water after midnight.  I think in her gut she already thought diabetes, but no parent wants that.

I remember what I was wearing that day.  Black stirrup leggings (this was the 90s people ant that was popular) and a big white t-shirt with a GIANT 🌻 sunflower on the front.  I remember getting my blood sugar tested and I remember the doctor coming through the office door saying, “You’re right, your daughter has diabetes.” I remember my mom bursting into tears and I remember thinking, “I’m dying! If my mom is crying like that, I’m dying. I have some weird type of cancer called diabetes and I’m dying.”

At 8 years old usually we don’t know many diseases but I knew cancer was a bad one so that’s where my mind went.

I remember the doctor explaining what I could and couldn’t eat and before I knew it I was off to the hospital for a week stay. A week of poking and prodding and crying (both me and my mom). A week of learning and fears and feeling my childhood ripped from me.

8 years old wearing those huge, hideous medicalerts 

After that one week, I spent another week at home adjusting to my new “life.”  Overtime the phone rang I secretly prayed it was the doctor saying they’d made a mistake and that I was fine.  That was something I never told my parents until years later.

My schoolmates made me cards and pooled money to buy me presents and to this day I still have some of those cards.  I missed Halloween that year.  I felt like I became an adult that year.  I also became a warrior that year.

Type one diabetes looks like me.  I have diabetes but diabetes doesn’t have me.  It’s something that I deal with 24/7/365. There are no sick days. There is no time off.  I’m functioning everyday as my pancreas. Some days it’s so tiring and frustrating but in the end, I know that I can use this trial for good and maybe one day I’ll be here to see a cure!

THRIVING with type 1 for 23 years

Who would’ve thought my life would be defined by needles and vials?  Certainly wasn’t on my dream board at 8 years old, but we take the cards life deals us, make the best of the situation and soldier on.

Many of you know me personally or have followed my diabetes journey on FB or IG.  But for those of you just tuning in, I’ve been type 1 diabetic for 20 years. Of those 20 years, I spent 12 of them on the insulin pump and then a little over 3 years ago, after lots of intense research and knowing there was a better way for me to live, I went back to multiple daily injections or MDI.  I thrived on MDI and saw the best progress in my health that I’d experienced since childhood.  I was able to lower my A1c (average blood sugar over 3 months) from 7.4% down to 5.5% without lots of swings in my numbers.  I frequently had flatlines on my CGM (I wear a Dexcom) and my doctor was impressed with my progress since I went “backwards” as they say from pumping to injections.

In March of 2016, since my husband and I had talked repeatedly with my doctors about starting our family and finally had the green light  to try, my endocrinologist highly suggested that I go back to insulin pumping.  I was hesitant but agreed.  I scored the high tech Tandem T-Slim insulin pump, think of it as the Iphone of insulin pumps, touch screen and all.  All the basics were the same as my old insulin pump and I went on about my life, carb counting, extending boluses, using the temporary basal features and the integrated dexcom.

To most people the idea of only having to stick themselves once every three days versus 10 times a day as is customary for tight control on MDI would be highly appealing but I’ll tell you, I hated infusion set change day.  I hated looking at my body for a “prime piece of real estate” that would be infused with insulin for three days.  My skin quickly began to look like pin cushion and lots of the issues I had in the 12 years of prior pumping came back.  Let me share them with you so that if you or someone you know has t1 and experiences these things on the pump, you’ll know you’re not alone and you’re not crazy…despite what your doctor’s try to convince you of.

Issues while pumping:

• Bad absorption.  Most people are able to wear an infusion set for 72 hours.  My body seems to not like to absorb properly after 24-36 hours of use in one area leading to elevated blood sugars on the end of day 2 and into day 3 of use. Plus I also firmly believe that insulin in the pump loses it’s effectiveness after being heated by our bodies for days on end.
• Slow healing.  After removing an infusion set, insulin would ooze back out, a lot of insulin usually. Nothing was ever infected but each “hole” left in my body from the cannula would scab over, leaving that pincushion look all over my body.
• Adhesive.  I’ve always been sensitive to adhesives in things like bandaids, medical tape, etc.  My infusion sites would itch and drive me crazy.  This mostly happens with the skin on my legs and abdomen.  My arms seem to fare well…which is weird, however I hated wearing sites on my arms and weaving the tubing through my sleeves.
• Infusion site FAILURES.  This is what makes me really upset.  You can have a bent cannula (the piece of plastic that stays under your skin to infuse the insulin) or you could have hit a vein and you usually DON’T have any way of knowing until you notice your blood sugar climbing and you can’t get it down after HOURS of fighting it.  Most of us don’t like to rip our newly inserted sites out…since they’re pricey to begin with, so we usually trouble shoot as much as we can until our last option is to remove and start over. 9x’s out of 10 I either had a bent cannula or had hit a vein with resulted in my bathroom looking like I just filmed an episode of CSI…blood everywhere. Yippe! Meanwhile let me remind you that blood sugars over 140mg/dl cause organ damage AND the purpose of me being on this technology was control for impending pregnancy. So imagine you’re growing a fetus that NEEDS steady blood sugars to thrive and avoid developmental complications!  You can see how this would be an issue!
• Tethered.  Constantly being attached to SOMETHING.  Needing pockets to hide it in or clip the pump onto.  Choosing clothing based on the fact that I had to wear this medical equipment just plain sucks for me.  For 12 years I didn’t wear dresses or skirts except for a few occasions like prom and my wedding (which I had a pocket sewn into my dress).
• Exercise.  “Where do I put this thing? Crap my clothes don’t have pockets. Eww not in my bra, there’s too much boob sweat there. Ugh my tank top straps aren’t sturdy enough to support this thing.  OMG we have to run and jump today, well I guess I’ll be holding it while I do box jumps or run that 300.”  That was me ALL the time at crossfit. Annoying. 
• Time.  Let’s go back to site change day.  It never fails that you WILL run out of insulin at the most inopportune times, like when you’re already running late somewhere but your bionic pancreas is screaming at you to refill it.  And the amount of trash all the pieces parts make is ridiculous.
• Free Pass.  OK, now this one might ruffle some feathers but I’ve worked with enough other t1’s in my coaching practice and with myself to know that (even outside of the diabetes community) we’ve ALL got issues around food!  We’re addicted. We LOVE to eat. We eat when we’re happy. We eat when we’re bored. We eat to be social. We eat when we’re lonely, sad, depressed. We’re emotional eaters. We abuse food. For me using an insulin pump is a crutch and for a lot of t1s it is for them as well.  When I was 13 years old the first thing the doctor said to me after I was hooked up to it was, “now you can FINALLY eat PIZZA and be like your friends!” and so it started, the idea that now I was “normal” and wearing this technology gave me a free pass to eat shit…yup I said it!  I’m going there. It should NEVER be advertised as a way to eat what you want.  But pumping offers a convenience factor.  It’s easy to say YES to food without thinking about it because we reach down, hit a button and insulin is delivered.  We don’t have to do the calculations for the carbs, find our insulin pen or syringe, wearing a pump means you just type in the info and the pump does the rest. Voila! Easy as the cherry pie you just took a bite of. However with injections it’s like an added layer of food protection.  You have to think through your actions more because you’ll have to complete more steps and use more brain power on your own.  Here’s an analogy: it’s 9pm, you’re not hungry but watching tv and decide you’re bored and there’s ice cream in the freezer and you MUST eat it so you go get it and a spoon and pile it into your mouth.  Great.  But what if you had the same thought about the ice cream but realized you didn’t have any and if you wanted it you’d have to get dressed, find your keys and drive to the store? You probably would skip the ice cream.  That’s what MDI helps me do.  Protects me from making bad food decisions because I have to think them through.

Now let me just say, this is my own personal account and the beauty, if you can call it that, of this disease is that we as t1’s have the ability to choose how we want to manage it.  Some of us swear by the pump and you’d have to pry it out of our hands to separate us from it. Others of us, like myself could care less about the technology factor of the pump and prefer the needles.  Both options are totally fine and it’s all about your individual preference.

I just wanted to write this post so that those of you out there asking WHY I went back to needles have answers, because I don’t think these reasons are really talked about!  I’m happy to be untethered, and to see my flatlines on my CGM coming back.  I want those of you that love MDI to know that it’s COOL to love MDI and don’t feel bullied or pressured by your doctor to change!  My theory is if it’s not broken, don’t fix it!  I wasn’t broken, so I really didn’t need fixing. And for those of you pumping that want to take a pump vacation or go back to MDI all together, don’t let your doctor tell you it can’t be done!  It can, I’m proof multiple times over! Find a doctor that supports what you want to do!

MDI Bloodsugars

I will tell those of you considering MDI or a pump vacation that taking injections and maintaining tight control IS WORK!  I’m not going to stevia coat that (we don’t sugar coat things in diabetes land because we have to inject for that!)  But I will tell you the freedom has been 150% worth it for me!  I will write another blog post specifically about my regimen later on this month because the next slew of questions that usually follows is what kind of insulins I use, how I bolus, how I split my insulin etc, which all of those things are specific to me BUT I do believe that by sharing what works for us, it allows other t1s to see what’s possible for them. So if you want to make sure you’re notified when that blog comes out SUBSCRIBE and share with your t1 friends!

So I want to hear below, are you MDI or a pumper? Are you considering taking a pump vacay at all??  What questions do you have for me?

Chat soon my diabtribe,

XOXO

Dorothy