Tuesday, November 26, 2013

This is life.

This post is a collaboration with some fellow Type 1s.

Very often we can feel silenced by outside expectations of what our lives should be with diabetes. We walk the line of showing the world that life is great and we can do anything with diabetes, to holy shit this is hard and it is always. on. my. mind.

Think about it: yes, we can do anything with this disease, but we can ONLY do anything if we are ALWAYS thinking about how we feel.It's a real Catch 22, and it's a real struggle for advocates from all walks.

So some of us turn to blogs, twitter, Facebook and more to connect with other diabetics. We educate our friends and lovers, we vent online because we aren't allowed or simply cant vent while sitting at our desk at work. Some of us become elite athletes and prove that life is good no matter what is thrown at us.

But no matter what, if you're a super elite Team Type 1 athlete, or if you're a regular gal who has a desk job in the marketing department at a non-profit (cough cough I am the latter) the thing that unites us is diabetes.

It's a roller coaster.

A high blood sugar before and a meeting? Happened to me.

Order the soup instead of the sushi rolls I would have normally liked, skip the noodles slurp the broth. Slam back a diet soda before the business counterparts sit down and slowly sip the refill trying to seem refined.

Can they tell that my vision is blurry?

My heart is racing, I'm not nervous.

My mouth feels like a cotton field and the small sips of pop are not satisfying, oh ugh when is that correction bolus going to start working?

I am nodding but not absorbing the information. I wish I could record this so I can learn what I need to later, would that be creepy?

I watch him splash his sashimi rice in the soy sauce and long to be eating that instead of this soup.

The waitress comes by, yes I would like a glass of water. My head is pounding and my stomach is lurching now, that stupid infusion site might not have worked. I only have 45 minutes to chat with this person, he is so knowledgeable I need every minute. Do I dash to the bathroom and take a shot? I have 20 mins left it won't make a difference.

My Dexcom alerts me to the rapid rise, and I silence it quickly with a tap on my pocket. I nod and try and seem interested and answer/ask questions methodically. Does he know that my mind is racing?

Oh I want to eat those noodles so badly, even though they are chilled and soggy now.

Our check has come, exit stage right, excellent performance again. Give a rage bolus and head out. Another day, another high.


How about those low blood sugars at inopportune times?

A long day at work. I spent the afternoon in a meeting, I had 3? 4? triangle sandwiches (the cute little meeting size ones), bolused a few units of insulin. I ate an apple and a cookie too, more insulin. I felt good.
The meeting was over and I was 5.8.

I walked to my bus stop, and my Dexcom rang that I was at a slight downward fall. I reduced my basal rates to get me home.

My bus was packed, not even standing room. I was squashed in the corner seat with my purse under my feet. I was looking out the window, watching the sun disappear behind the industrial buildings on the harbour front. I was looking forward to my meal that was cooked by my boyfriend. As I gazed at the lights I realized I had to focus a little bit to make sure the lights weren't moving.

The invisible elastic band tightened right above my eyes and the bus began to spin.

My forehead grew a thick dew even though I had spend most of the day chilled. The woman next to me was sitting and reading peacefully. My stomach growled and my mind began to focus on only one task: get to the fast acting glucose in my purse.

I had to twist and manoeuvre and pull my purse up. I was sorry, I was sorry to the lady who was disrupted by me, I was sorry that I didn't eat more, or take less insulin. I was so sorry. My Dexcom vibrates 4 times and alarms loudly as I struggle to get my purse off the floor.

The lady next to me was obviously annoyed by my body thrashing with my purse. I wanted to scream at her to move and just let me at my purse. She sat annoyed. I continued to thrash with urgency.

Finally I set my purse free it flies up towards my face with indignation and the precision of a bull in a china shop. Its contents start to fly, my plastic lunch container hits the gentleman's shoulder in front of me. I appologize, I try and get my things back in order, but my hands are shaking so hard that I can't seem to get it together. Square peg in the round hole. 

My hand anxiously feels the pockets in my purse for glucose. I have one quick stick and an apple. I feverishly tear open the quick stick and dump it in my mouth. Most gets in. As I moisten the sugar with my tongue someone across the aisle is looking at me. She can't believe the fuss I just went through to get candy, of all things.

I bite the cold apple and it pains my teeth. I can feel the juice run down my chin but I don't care. I need all of the sugar I have. I eat it quickly and chew like it is the first apple I have ever tasted. I look around. Nobody is paying attetion to me now. I close my eyes and wait. 5 minutes. 15 minutes. Better. I feel better.

I get off the bus and head to my car. A finger check tells me I am 4.2 mmol/l. I feel good and my Dexcom is holding stead at 78 mg/dcl.I decide it's safe to drive home to my meal.

But I lost my pen. My favourite pen.


Monday, November 11, 2013

A Dexcom Break

I am taking a break from using my Dexcom.



You see, Dexcom sensors are still not available in Canada. I have been sent some and purchased some from friends and have stock piled them. I tape and re-tape and stick every sensor down to the point that they hurt.

A continuous glucose monitor is an incredible tool, in the year I have had access to it my A1C had dropped from 8.4 to 6.1. I know that at night I am either low or high and I have very VERY rarely had a night where I am not one or the other, despite fine tuning my basal rates. I learn so much.

However, I need  to take a break. I need to break from the constant reminders, the tape, the marks all over my body. I have four sensors remaining.

Dexcom has been approved by Health Canada, as has the Animas Vibe. However that was in August. As of November, I am still hearing it will be a "few months" until either the G4 or the Vibe will be available to the market. So once that hurdle is done, there will be the hurdle of the insurance. Not only that, it has been 1.5 years since I have been on the wait list at my endocrinologists office. I would push more for an appointment there, but I find the 4 hour wait for a 10 minute appointment where I have to re-introduce myself every time a complete waste of time.

The hurdles that we have to go over just to take proper care of ourselves is astounding. The fact that I have to start considering how to get into my doctor, to get her to write a letter of medical necessity, to get my insurance to maybe approve a life-extending device......it's exhausting.

So, I am trying to reserve the supplies I have. It has been two days that I have been disconnected. I noticed I don't recognize how my highs or lows feel and have confused the a few times in the past few days. But, it is what it is. It's the hand I have been dealt. I have to keep pushing.

Saturday, November 2, 2013

November day : eyes

When you are diagnosed with diabetes the doctors are sure to remind you that high blood sugars are leading to certain doom. That when you sneak Crunchie bars while sitting under the jungle gym with your friends, you're doing harm and you are slowly killing yourself and shows signs of depression and mental illness (actual words from my former paediatrician, who I fired at the ripe age of 12.) 

Admittedly, here's a shocker....I let my diabetes care slip in my late teens and early 20s. I had SO much else on my plate, something had to get my bare minimum attention. It couldn't be my marks because I was depriving myself of a rich future to educate myself, it couldn't be my first or second jobs because they were fuelling my social life, groceries, and laundry. It couldn't be my social life because I was human and in university. So I was diabetes. I let it go, sometimes days, or months without a sugar check. I would Bolus, change my sites and carry on. I had few lows and my A1C hovered around 8-9 for years. I was lucky, I know. Somehow I managed a relatively average A1c for my age, without caring. Like, at all. Even though my roommate was also Type One on a pump, we fuelled each others indifference. So much so that one night while we were out, (we happened to be wearing the same infusion set) my pump ran out of insulin at a party, and while normally I would go home to refill or have a refill on me, every hour or so we found each other, I plugged in to her pump and micro bolused. I don't recommend that, FYI. We probably narrowly avoided a lot of problems doing that. And we did it a lot.

So fast forward. I am in my late 20s. I am with the man I intend to spend my life with, I have a house am working on getting a career I am proud of and I read about diabetes. A lot. I know what doctors, scholars and others say about complications. I always thought that it couldn't be me. I still am lucky to not be diagnosed with complications, but it's a nagging thought at the back of my head always. I have some issues with my legs getting painful when I work out, but I am 1.5 years on a waiting list to see an endocrinologist (Canadian Healthcare ain't what it's cracked up to be).

I had my yearly eye check up today.

It's a clammy hands, looking to busy my brain kind of feeling, waiting for a check up like that. The doctor always asks me to check my sugar at the appointment time, 3.7mmol/l. A few glucose tabs, and we are on our way. Puffs of air. "Can you read this letter without your glasses?" "No." Wearing the glasses, can you see it now? Of course. Retina scan. "This is scary" I disclose. A warm smile, desperately trying to comfort me "it just takes a picture, we don't touch your eye, no pain!" I nod, he doesn't know that the scary thing isn't the pain it doesn't cause, it's the pain that a new diagnoses could cause.

I put my forehead onto the medical plastic and state blankly ahead. Dots and lights. "Isn't this better than dialation?" He asks cheerfully. "Oh yes. Yes it is" my freckled fingertips dig into the hard leather of the exam chair, the sweat on my palms makes my hands slowly drip down the sides the chair like wax on a hot candle.

"All done!"

The photos appear on the large computer screen and he studies them carefully. Zoom in and out, move around, drag the mouse. Look in. Scribble on the paper. Look up, notice the anguish of waiting on my face.

"You have beautiful retinas. There is no sign of retinopathy. Not even a vessel out of place. Beautiful, just perfect! You're done have a nice year"

Exit stage left for the doc.

A sigh of relief from the patient. One more year I don't have to worry about it. I don't need more worry. 

One more year. 



Friday, November 1, 2013

November

I took a hiatus. I don't have much of a reason as to why I took a hiatus, just a genuine lack of inspiration. I found myself questioning who would really care about XY and Z in relation to my diabetes.

I had a give away, and aside from one comment asking not to be given the prize, I did not even get a chance to give away a prize. I blog to potentially help other people with diabetes feel a little less along, I blog as a form of catharsis, a way to keep me on my toes, and as a way to stay connected to other people with diabetes. But for some reason my inspiration and passion about advocating for people with diabetes dwindled when I started to see my readership crash. I admit it, people actually reading the blog is important to me as well. I don't think the comments or shares or likes matter by comparison, but if nobody is reading then should I be putting the time and effort into telling my story?

Enough about my though processes. It is November! It is the month where I have to slog through my self-centeredness, and help spread awareness and knowledge, to help empower and share. Now is my time to come out of my cave!

SO go forth other bloggers, tweeters, Facebookers and real-lifers.

I am going to try and make my self take this cathartic route and keep pushing for us this month.

How are you?