Friday, February 15, 2013

Reflecting on a conversation

I was recently interviewed by someone on the phone as part of an information gathering session they selected me for. Throughout the conversation I was asked a lot of questions about how my diabetes life has affected me over the years. They want to learn more about life with diabetes from the patient perspective to better serve us.

I answered the questions as best as I could and realized first and foremost that my memory is really shitty. It brought up a lot of talk about the dark days in the beginning of my diabetic life. For those of you who don’t know, here is a little re-cap: I had sudden onset type 1 diabetes (diagnosis story). It literally happened over night as a result of only one day on ‘roids. I was taking them to help with an overly active spread of poison ivy. I went to bed normal and woke up with diabetes. No joke. My A1C was fairly normal because the onset was so sudden (A1C tests for an average BG over the previous 3 months). He didn’t put me on insulin or oral meds. He didn’t recommend I get a glucose meter nor did he refer me to an educational centre. He sent me on my way armed with….. ABSO-FUCKING-LUTELY NOTHING! Oh wait....... he DID tell me to eat only proteins and fats... and no carbs. Great idea right?!

As I was talking about my diagnosis and what followed that fateful day, a lot of the feelings came back to me. I felt abandoned by the medical system and totally lost in the shuffle. I fell through the cracks without even a positive or affirmative diagnosis of anything. My mum desperately started searching the net for answers but we didn’t even know what we were looking for. This was also over 10 years ago so the internet wasn’t quite the resource it is now. The woman on the other end of the phone was curious to know what happened next. It’s all a little fuzzy as it should be for someone with type 1 diabetes wandering aimlessly through the world without a meter or a drop of insulin in my arsenal. Two months without insulin. My doc finally sent my mum and I to a support group (that he failed to mention was for type 2 diabetics). I probably looked like I was on deaths door. Wafer thin and dying inside. It was the nurses that day that pulled me aside and gently asked why the fuck was I there? Why wasn’t I on insulin? Why didn’t I own a glucose meter?

The rest is sort of history, or is it?


Somewhere on the side of the road in Taiwan. After an entire night of not sleeping in a tent on the beach. Delirious much?

I wasn’t the most responsible diabetic in my early years. Being diagnosed at 22 and then moving to Taiwan 6 months later didn’t really put my disease at the top of my priority list. I remember starting insulin. I remember the honeymoon period and my very first hypo. I was put on NpH ,the long acting basal insulin that still peaked after 4 hours and lasted for 6-8 so it was to be taken twice a day (info for those readers not in "the know"). It caused daily intense and persistent lows so I decided to just… stop taking it. I didn’t “get it”, I didn’t understand the importance of basal insulin and nobody explained it to me. It would be about 2 years later while backpacking in Thailand that a local doctor at the hospital there told me about Lantus. The wonderful (supposedly) 24 hour basal insulin with no peaks. How interesting! I started right away. 3 years after my initial diagnosis I started taking basal insulin. That is NOT okay.

I went to an endo once. We instantly butted heads and I refused to go back and didn't see a point in going to one at all. Again, non-compliant diabetic on my part. Needless to say I never got routine blood work or anything. Nobody told me I needed to and I didn’t really care either. I was taking insulin and checking my blood sugar and that was the extent of it.

Having this conversation with a complete stranger made me see just how much BETTER I am with myself now. I don’t really remember what exactly motivated me to suddenly take an interest in my diabetes. I was training for a half marathon during my time in Taiwan so it’s not like I was a complete delinquent diabetic. I'd like to think I knew something if anything at all about exercise and diabetes. Though to be honest, I don't entirely remember HOW I did it either. I don't remember AT ALL if I carried a glucose meter or fast acting sugars on my runs. Somehow I managed but it makes me feel creepy that I have ZERO recollection to this day.

I've made a lot of mistakes I'll never make again. Like that day some friends and I went tubing down a river in the sticks of Taiwan only to realize it would be a 10 hour affair. We had no food or water. Nothing more than some coins in a ziplock bag for the bus trip back. I lost my sunglasses and hat that day in the rapids. I had flip flops tied to my shorts. How could I be so stupid to not have anything on me in case of a low? I started going low half way through the day. We scampered up a steep valley to a rural road in the mountains. Through a field of VERY angry oxen before finding a wee corner store in the living room of someones house. We spent our bus money on food. By the time we reached town via the river the buses had stopped running, it was dark and we hitch-hiked all the way back to town.


I was apathetic to diabetes as a force in my life. For the record, life with diabetes is far better when I actually pay attention to it and how it affects my overall health.

Sorry for the long ranty-like post.

Thank you to the woman I spoke with who got me to reflect on my 10+ years with diabetes.

4 comments:

  1. Thanks for sharing this. I still haven't been able to write about this much, though in all honesty, it wouldn't be as exciting as your descriptions. Glad you made it through the past ten years, and here's hoping you have many more decades with us... but hopefully, without diabetes.

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  2. I can't remember how I survived as a teenager - going to the park to play basketball for HOURS! I can't remember testing or eating or anything. Just playing.

    Maybe there's something about diabetes that zaps our memory?

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  3. Wow, this is - believe it or not - inspirational. You've come from the crappiest of the crappy treatments (no fault of your own, I must add. Nobody told you about basals and stuff like that!), and look how far you've come! It's never too late to learn and make a change for the better.

    I look back at my life in high-school and college (also on Regular and NPH) and often wonder how I ever made it out alive. From reading your story, you must be feeling the same. But putting reasons aside, I'm glad you did.

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  4. Our original dx stories are so similar. "Diagnosed" but not given accurate treatment at all. Then the horrors of NPH. I switched right from that to a pump and could not believe I didn't have to be low every day at lunchtime (when my morning NPH was peaking).

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