Friday, March 29, 2013

But What If?

It has been a hectic few weeks in my life.

T and I bought a house! It's a glorious feeling to achieve something we have both been working hard at and something we both want. We close the house on June 4 and after that it will be months op a few updates and renos that need to be done. I am so excited to put in hard work to my own home. Todd and I excitedly chatted last night about colors, places to put things what colour laminate floor etc.

It's been great.

What wasn't great was meeting with our mortgage professional. Not that he isn't a really nice, thorough and educational person. It came down to choosing to put life and disability insurance on our mortgage. $26 a month can do a lot for us should something happen to myself or Todd and ensure that the payments are being made.

Stacey looked at me and said "now, you probably won't qualify for life and disability, but you should apply and answer the questions they may have for you truthfully and see what happens. Diabetes is one of the most common reasons people get denied for this insurance. I am trying to be truthful here."

I knew this. It's part of the territory. But the words sting. I looked at Todd, he seemed completely unconcerned with the words he was hearing, he was cautiously optimistic. Maybe it's because I don't make a big deal of what COULD happen with diabetes, I make a big deal that I am doing a really good job of taking care of myself. Maybe that calms his fears that I may, some day end up with heart disease, loss of vision, limbs, the need to dialysis among many, many other things.

My throat got a little tight and my eyes were stinging with tears. Is this stupid disease something that might leave Todd financially crippled if something does happen to me in the future? I didn't ask for it. I am doing everything I can to live like it isn't something that CAN happen to me. But what if?

But what if? What if I hit the wall again and go deep into another burnout? As I gazed at the man I have chosen to spend my life with, in that moment I knew that I had more responsibility now to never let that happen again. I knew in that moment that if I started to feel like I had to let something go it would never, ever again be my health or my self-care. I knew that I had to lean on others for emotional support at some point, and never to let my mental health get fuzzed again.

I carefully read every word of the questionnaire. I only checked one box yes. The most general box of them all:

"Are you affected by or have you been diagnosed with: diabetes, cancer, high blood pressure, high cholesterol,  gastric-intestinal issues, crones, colitis, muscular issues, dementia, mental illness, scoliosis, diseases of the bone or blood, HIV, Aids etc etc etc etc." The list went on. I put my pen on the yes box and slowly checked it. I was so mad. I was so mad that the insurance industry was lumping me with everyone else. I was so mad there wasn't a clause that said "but if you are trying your best, and are healthy by a doctor's standard, you can check no."

I didn't have the option to explain that this can be hard but I am doing everything I can to make sure I never NEED life and disability insurance on my mortgage, but I am human and humans break down eventually, isn't that was this is for? It is guaranteed that ALL humans will go through some sort of illness in their life, just because I have been handed my card early in life, does this mean I am any less worthy of having the stability it may lend to my partner in the future?

It was the first time in a long time I felt mad that I was diabetic rather than empowered. It was the first time that I couldn't turn back and educate someone on how life with diabetes just really isn't that bad. It was the first time that I wasn't really sure that I felt that way about diabetes. In that moment I was mad and hurt. In that moment the checked off yes box laughed in my face.

I still await my call from the insurance underwriter. I will be honest with them in how well I manage and I hope they can see that my hard work deserve my peace of mind in the future.

But what if?


Tuesday, March 26, 2013

I run on batteries

It all started yesterday evening. On the drive home I slipped my hand between my bra strap and my shoulder and felt nothing. That's where I usually keep my Dexcom receiver (I know, crazy, but it works, ok?) My mind began to race. I thought that if it fell out of my place then I would never have another one again. Would I stop feeling my lows again? Would I start mistaking the highs and lows?

The entire evening was off. I checked my blood before supper and I was 10.4 with no explanation. Bolused ate and carried on. Checked before bed and I was 13.6/250. Bolused again, temp basal. Woke up at 1am thirsty and sugar at 15.8/284. At that moment, in my 1am glory of bed head, puffy eyes and cotton mouth I decided to change my infusion site. I methodically unwrapped my little spaceship pressed the injector to my skin on my arm (my arm has the quickest absorption) and tried to inject.

Shit. I forgot to remove the little plastic slip over the needle. I pulled it away from my skin and inspected it the best way my 2am eyes would. I decided it was fine and re injected, sans plastic. Success.

I corrected again, and upped another temp basal. I woke up at my usual time and I was still at 13.5/248. At this point I was ready to tear the pump off and call it a day.

I got to work and saw my dexcom receiver on the floor by my desk. I was so grateful that I immediately whipped out my meter and checked my blood to calibrate. Crap, low battery. I checked and I entered the reading (12.7/229) and it asked me to enter another BG because it was reading WAY off (it was reading 26.8/482). So...I went to check again and the meter yells at me to CHANGE THE BATTERIES NOW. It stomped its stupid foot and wouldn't work.

SO I didn't calibrate. SO I didn't have my meter all day. And the dexcom? LOW BATTERIES. So that vibrated all day and real LOW all day. I was ready to tear my hair out. For real.

I charged everything up and am happy to report I am 5.6/99 after dinner tonight.

I run on batteries. I am not afraid to admit that.

Wednesday, March 20, 2013

Costco: the worst place for a low

My blood sugar at supper time was 6.8. I ate an extra lean hamburger with all the fixins on a bun, bolused and swiftly left my house again to meet up with my friend at Costco. My Dexcom showed me a nice sideways arrow and I felt good, so I didn't even check again before pulling out of my driveway. (Even though I usually check my blood before I even start the ignition to my car these days.)

I live around 30 mins from...well everything, but specific to this post I live 30 mins from Costco. My friend was down from Cape Breton and needed a pal to go with her who has a membership, and we like our quality time together. She likes to escape her children for a few hours and I always love spending time with my old friends from childhood. Anyway.

As we were walking the aisles of boxes of 200 granola bars, 17L of pickles, economy mayonnaise and more I started to feel hungry. I thought it was bizarre since I had finished supper earlier, so I chalked it up to being surrounded by so many treats that I just don't eat.

Then it hit me. My legs felt...cold and my arms felt heavy. My head got a bit spinney and my friend was talking but her words were kind of...weird to me, my stomach gave flashes of nausea. I took a glance at my Dexcom and it said 100 even. Knowing there was a 5 minute-ish delay to the Dex, I popped a few honey drops in my mouth. I gave my friend a heads up and she nodded and we stood in the aisle admiring the 4 pack of 2L Ranch dressing choices. I checked my blood and it sang back to me that I was 3.4, my dex still read 89 so I knew I was dropping fast.

The spinning subsided and I popped my third honey drop in my mouth and we slowly lumbered on. The hunger phase of my low began. And it was...ravenous. We stopped at each sample booth trying granola bars, yogurts, puddings, chicken. I stopped in front of the pallets of juice and gazed. I thought THIS is Nirvana. I wanted to tear them all open, fill the aisle with sticky mango nectar and splash around in it.

I resisted this urge and had another honey drop as I felt myself levelling out. My Dexcom now read 95 with a slight arrow upwards. We carried on the rest of the trip, but as we walked away I glanced back at the juice aisle and smiled.

Costco is officially the worst place to have a low blood sugar. Stay strong Costco shoppers with diabetes, resist the urge.

Saturday, March 16, 2013

The Canadian Diabetes Charter

I have been busy lately and my blog has fallen to the wayside a bit. I haven't had a lot to say either, life with diabetes has been pretty average lately, the highs, the lows, the juice boxes, the honey, the corrections etc.

I have been approached by the CDA to be a part in a Delphi Panel of stakeholders in Diabetes Care in Canada, thank you to the CDA for finally showing that people with diabetes are MAJOR stakeholders in diabetes care!!! The point of this group is to develop questions and thoughts to provoke conversation in different regional discussion groups across the country with the ultimate goal is to create a Canada-Wide Charter for people living with diabetes. 

I have my differences with the CDA. I have bitten my tongue several times with how I have been treated by the Association and how the programs I care dearly about have been treated. I had my worries about how much money is actually going to executives and management and how much had been going to programs. I had my concerns for years and years. Recently I have struck another bump with them. I have been biting my tongue because I think this project is really important and I don't want to miss out on the CDA actually accepting input from people living with the disease and who are actually active in the community! I think this is a BIG step forward for the CDA, so my differences with the organization are on the sidelines for this project. Definitely not gone and forgotten, and maybe one day I will write about my recent experience with the organization. But for now...it can lay.


So, do you live in Canada? What do you think should be included in a Charter? If you lived in Canada what would you want to be protected and improved in diabetes care and perception?

Here are the questions I have submitted so far:
1)Why does the level of care and access to medical devices and services differ depending on what part of Canada I live in?
2)Why are medical professionals not required to update and advance their knowledge in diabetes?
3)How can we move forward in advancing emotional support for those living with diabetes?

As a person with Type One in Nova Scotia who has been pumping since 1999, I have noticed there is a great divide in our provincial health systems. I now live in one of two provinces where pumps are not available under a provincial health plan. Ultra long acting insulin has JUST been added to our archaic diabetes care program! I have paid out of pocket for two insulin pumps now and that is no easy feat. It is also something that just isn't possible for a lot of people. There is a 10-12 month wait to see an endocrinologist in Nova Scotia, I have friends in Alberta, Ontario and BC that get in to their clinic in under three months and have had pumps paid for by their provinces.

I think education on clearly defining the responsibilities of the media, large companies and organizations in marketing diabetes has to start. Lifting the blame begins by making it a faux pas for individuals, companies, organizations and products to be marketed and prompted as "curing" or "getting rid of" or even controlling diabetes. It is nobodies business to do any of those things except researchers and the patient's health care team.

The last question is a big one for me. There is no support or recognition in Canada of the psycho-social toll diabetes takes on an individual. It has been proven that there is a link between living with diabetes and depression, eating disorders other mental illnesses. There should be specialized care programs for people dealing with these extra complications of life with diabetes. There are programs set out for those with other long-term, chronic illnesses and diabetes should be no exception.

So, we need to end the stigma by effectively removing the notion from the public that it is EVER ok to comment on another person's health. People with all types of diabetes deserve the same respect people living with asthma, crones, kidney disease, lung disease, lymphoma etc all receive.

I think my opinion may differ a bit on the previous as far as the desperate need to always separate type one and two. I think doing this creates a further divide and ease of finger pointing. You know, the type one didn't do it to themselves but the type two did? That's a common thought process in the diabetes community and it isn't right or fair. I think with this type of disease we have to approach the big picture and make sure the point is driven home that it is flat out unacceptable to finger point or comment unless you are part of a health care team for the patient. Together we are stronger.

Do you have anything you would like me to add to get the discussion groups focusing on OUR diabetes? Let me know in the comments!

You can hear more of me talking about diabetes in Canada on DSMA Blog Talk Radio right here

Friday, March 8, 2013

International Women's Day

In honour of international Women's Day I want to touch on something that really affects women living with diabetes, that is often unmentioned in discussions about effective control.

Hormones.

I know, men have hormones too, but from my understanding they don't have the massive swing like women do, especially women like me who are in their prime child-bearing years.

Only since I started wearing the Dexcom have I truly noticed that for one week of the month my blood sugars are so wildly unstable and unfixable that I require and entire 40% increase in my basal rates (maybe more! this is a WIP). That is a HUGE amount of insulin that I need to fight off whatever other hormones are surging through my body. I know I am not alone, I know I can't be. I have lots of female friends who go through this, right?!?

I won't get into a lot of personal details, but I noticed yesterday that I started having my typical PMS symptoms, and also my blood sugar was darn near impossible to get under 10. I ate almost entirely carb free all day and still was stuck around 10-12. I had a site change and everything. I dipped a few times to the 5-8 range but as soon as that happened my body reacted quickly and spiked me back up.



I always knew there was a bit of connection between that week for me and blood sugars, but having the Dexcom has provided insight for me that is invaluable. I know now that I need a second set of basal rates every 28ish days...do I have to start charting that too?

Seriously, sometimes this is just too much work for my brain. Most of the time I am fine, but some days (like today!) I just want my body to function for itself. I am sick of doing the work of all of these organs! Geez.

Tuesday, March 5, 2013

My Quantum Opinion on the PR Blunders of the DRI


 

quan·tum  

/ˈkwäntəm/
Noun
  1. A discrete quantity of energy proportional in magnitude to the frequency of the radiation it represents.
  2. An analogous discrete amount of any other physical quantity, such as momentum or electric charge.

Today was a painful day in the online community. There have been a few days in the past few weeks where I felt betrayed by members of the community. The first being the fake accounts of Bonnie and Jeremy who I was in contact with frequently, and today.....well today is the most painful.

Today the Diabetes Research Insitute announced that they are this close to a cure. In fact they used fancy shmancy term like Quantum Leap forward (FYI: that is not the right use of quantum...if they meant massive) I am happy for research, I want there to be no diabetes in my future, I want companies who are doing this research to tell me about it! What I don't want is to have my hopes twisted, I don't want to lose another night of sleep because a member of my community had me on the edge of my seat. I don't want to be a part of an awful PR spin that makes my stomach drop at the giant (proper term, probably should have used that one, DRI).

Last night our very own Diabetes Dad posted a teaser about today's announcement. He specifically indicated in his comments that he was shaking and crying. He has two children with type one, he works for the DRI. His blog is solely his opinion and I get that. That teaser left me upset that such grand news was being withheld. It wasn't necessarily Tom's fault, as all businesses have to be a business. It wasn't his fault that his emotions overcame his sense last night. In fact, he posted a very poignant albeit a bit finger pointy apology today.

This is bad PR. The entire past two days are BAD and misjudged PR blunders on behalf of the DRI. The BioHub is exciting, yes. But making a call for money at the end of a video that can literally change everything about the way a person eats, sleeps, drinks and breathes is shitty.

I don't think the teaser post last night was part of a PR scam. I think the video and announcement today is. I think that using and manipulating the DOC the way we have been, and then manipulating a video of an islet cell transplant patient sounding like she had been a BioHub recipient was low. I think that the ask for money, basically saying if you want to be cured you have to donate was low. I think the entire production by the DRI today has been a low point in how messages can be relayed.

I also think this is a great case-study for PR students, with a focus on using your audience and the importance of your personal brand in relation to your job. You see, Diabetes Dad posted about his opinion and his feelings on the subject. His blog is his own, however when you work for an organization so closely tied with your personal brand you need to disclose, disclose and disclose again. You need to be more than clear what the intentions are of your posts, you need to not post teasers to announcements like this using terms like "it's what we have been waiting for." Because, what are we waiting for? A cure. What is the BioHub? A fantastic and aggressive treatment. When our work is heavily involved in social media, and when our social lives align with the roles of our positions we need to be cautious of how we present our opinions. It's not like it used to be. This is a whole new world we live in, the electronic world is so connected we have to remember that if we are taking a position where our personal views and our professional views align we sometimes may not be able to separate them. Diabetes Dad, I don't think you were malicious or intended to hurt your community. I think you are a genuine person who was excited about your work and mis-presented in your excitement. I accept your apology and hope you have learned from your mistake.

I work in PR. I have my grad degree in PR. I get it. I know why the video is worded the way it is, they are kicking off a major funding campaign for an amazing feat. I hope they are successful. I really, truly do. I hope they learned their lesson on playing with the emotions of other human beings.

I know I am playing into their hands and they WANT people talking about it. I WANT people to fund this project because I WANT a new TREATMENT. I DON'T want to be toyed with. No more.