Wednesday, November 12, 2014

#InsulinForAll and #Sparearose

Did you know that in our world, where we complain about which bottled water we don't like to buy because of the taste there are people dying because they have no access to insulin?

There are a few campaigns that address this.

One is the #insulin4all and the second is #sparearose.

You can visit insulin4all.tumblr.com to check out the campaign. There are people from all over the world taking part.

More about Spare a rose in another post.

Oh yeah:



Tuesday, November 4, 2014

Low brain no edits

Ever since I started this blog I thought I would write a post while I was in the middle of a low and just spew my thoughts. No edits

Here is it.

I woke up this morning and my blood sugar was 8.0.

I took a bolus for my brakfast and then went on my way.

grabbed my lunch at the last minute because I didn't want to starve.

I drank a cup of coffee black, no sugar or creamer because a blood sugar of 8 with carbs in the morning can lead to yesterday and i don't want to feel like my air is being sucked out of my lungs all day again with a high blood sugar i just can't chase.

I got to work and had a coffee from starbucks put some cream and one sugar in this time.

work. worked. emails. so many email. click facebook scroll scroll, someone called scott johnson out for being a shitty advocate and i checked my calendar to make sure it isn't fucking backwards day cause  that shit is WEAK. that person doesn't know what they're talking about we all love you scott and you're a better person than most people we know. please don't ever stop.

nausea.

why am i nauseated? was my roast beef sandwich bad last night? it tasted fine. good. great even. shit i wish i had a roast beef sandwich right now.

emails. mroe emails.

oh someone tagged me in a post about movies i like movies yes i will go to that movie. coffee is cold.

i really want a damned roast beef sandwich.

stop. wait.

did i eat breakfast for my hefty bolus? i bolused for 60g of carbs.

think.

fuck thinking is hard.

flushing face. boss asks a question i answer in the positive i don't know what i agreed to.

i am hungry. why am i so  hungry i was 8.0!

8.0at 6:30 this morning with a large bolus and....

and that...breakfast?

shit.

SHIT.

I forgot to eat breakfast.

shaky. my arms are jell-o.

this is urgent. check. did i forget my meter? did i re-fill my strips? what is in reach tht has sugar. this is going downhill fast. so fast. maybe i should write that blog post. crap another email. i have to call..

shit.

check. poke. why won't my poker click> i am holding it backwards. what happens if i pass out? what happens if in this moment, at my desk is the first time in 25 years with T1D that I DON'T MAKE IT.

3.4

shit I should have eaten my breakfast. Why did I do that? I am so stupid. That was stupid. I k now better. I am better. I just don't want to have a high blood sugar because i like my feet, my kidneys, my eye sight. i am 30 now.

a big spoon full of nutella and two glucose tabs.

write that blog post now before it all kicks in,

i feel safe with sugar but iam still feeling low. my head feels detatched and far away my fingers are spilling my thorughts. i know there are typos but i promised NO EDITS.

such a stupid rookie mistake. i never skip breakfast. especially if i have bolused. why didn't i just eat the banana on my desk?

i'll eat that now. I want my banana and a roast beef sandwich and nutella and toast and chips and chocolate and my apple, and cheese. oh man i want a cheese stick.

13 mins have passed. re-check...........


4.1.

In the safe zone but feeling low and so hungry.

I need to eat now. I am safe to make myself some breakfast.

Why did I do that? Stupid I was so stupid. I am better than that.

Publish.



Wednesday, October 29, 2014

Less Until None is My Future.

I felt like I was going through some darkness.

I was getting turned down for sponsorships, donations, events...support left and right.

I felt like I was burning my family, friends and loved ones out.

I felt like I was slipping and failing through work. Through advocacy. Through me.

Then something crossed my inbox.

It's one of those things that, were I a religious person, I would take as a sign.

Something was working.

I was making a difference.

A light switch.

The first rays of sunrise over a dark and foggy night.

Today history was made. Today was a day that I felt energized again.

Today, a human received their first encapsulated islet cells. It's happening. Less until none is not just a tagline. It's reality.

I feel, truly, that this is my future.

My eyes burned and filled, because my future seemed a little brighter today. It's hard to quantify the emotions that go with that.

I feel, truly, that this is why I do what I do.


JDRF-Funded Islet Encapsulation Program Reaches Historic Milestone


 First Ever Person with Type 1 Diabetes Receives Experimental Encapsulated Human Stem Cell-Derived Beta Cell Replacement Therapy 
New York, NY, October 29, 2014 — JDRF, the leading research and advocacy organization funding type 1 diabetes (T1D) research, announced today that JDRF-funded partner, ViaCyte, Inc., a leading regenerative medicine company, has for the first time ever implanted a person with type 1 diabetes (T1D) with an experimental encapsulated cell therapy product candidate, called VC-01TM, which is being developed for the treatment of T1D. This individual, and others to follow, is participating in a trial to evaluate the safety and efficacy of the VC-01 product candidate, a potential replacement source of insulin-producing cells.
“JDRF is excited about the historic research advance of this encapsulated cell replacement therapy for type 1 diabetes,” said Derek Rapp, JDRF president and CEO. “Encapsulated cell therapies have the potential to fundamentally transform the lives of people with type 1 diabetes by restoring a person’s independence from insulin injections and reducing concerns of the complications that arise from living with the disease.  We are enthusiastic about the progress of research in this field, and we look forward to the full enrollment in the trial and to results from this study which could move us one step closer to a new and effective treatment for type 1 diabetes. This day would not have been possible without the basic stem cell research and the insights learned to protect insulin-producing cells from the autoimmune attack that JDRF has been funding for years.”
The study of ViaCyte’s experimental therapy, VC-01, is initially being conducted at the University of California at San Diego (UCSD). The experimental product encapsulates immature human islets derived from a stem cell source in an immune-protective device called the Encaptra® drug delivery system. At first, a small group of people in the study will be followed for several months to ensure the safety of the therapy. After the initial evaluation of this first group of participants at the UCSD site, it is expected that additional sites will be activated to enroll more people in early 2015.
The primary goal of this first study is to evaluate the safety of the VC-01 product candidate in people who have had T1D for at least 3 years; not to make them insulin independent. However, the study is also designed to evaluate the effectiveness of the VC-01 product candidate in replacing the lost insulin-production function that is central to T1D, by measuring C-peptide levels as a marker of insulin production. This study will provide researchers with critical information about the functioning of the encapsulation device at the implantation site and about the maturation and survival of the implanted cells.
Dr. Paul Laikind, President and CEO of ViaCyte, said, “Treating the first patient with our stem cell-derived islet replacement product candidate is an exciting next step in our quest to transform the way patients with type 1 diabetes are impacted by the disease.  Moving from a promising idea to a new medicine is a long and challenging journey and we are grateful to JDRF, and all its supporters, for the tremendous and continued support they have provided. At ViaCyte we have been working over a decade to reach this milestone, and JDRF has been there every step of the way, providing critical funding, excellent advice, and advocating on our behalf.”
People in the study will go about their daily lives with the implanted product for up to two years. They will be closely monitored by clinicians during this time. The encapsulated cell therapy here involves putting cells with the potential to mature and produce insulin in a protective barrier and implanting them in the body using a minimally invasive procedure. Once matured these encapsulated immature human islets might sense a person’s glucose levels and produce insulin while the barrier shields them from the body’s T1D autoimmune attack as well as foreign graft rejection. If they perform as they have in animal studies, the cells will continuously assess the amount of glucose in the blood and release the appropriate amount of insulin. Importantly, encapsulated cell replacement therapies have the potential to overcome the major obstacles that have limited the use of human islet transplantation in people with T1D: limited donated islets and the need for lifelong administration of immunosuppressive drugs to prevent destruction of the newly introduced islets. Stem cell-derived islet sources may represent an unlimited supply of replacement insulin-producing cells and the protective devices eliminate the need for immunosuppressive drugs.

Monday, October 27, 2014

Where The Good Blood Sugars End

Where The Good Blood Sugars End
(A poem)

There is a place where the good blood sugars end
And before the upward trend begins,
And there the tongue feels soft and moist,
And there the eyes shine big and bright,
And there the graph rests before its flight
To tease in the pre-high glow.

Let us leave this place where the blood runs fast
And the tubing winds and bends.
Past the body average-feeling
We shall walk with a walk that is sturdy,
And watch where the trend arrows go
To the place where the good blood sugars end.

Yes we'll walk with a walk that is sturdy,
And we'll go where the trend arrows go,
For the CGMs, they mark, and CGMs, they know
The place where the good blood sugars end.

(a rip off of Where the Sidewalk Ends by Shel Silverstein..I definitely can not take credit for anything in this poem except the manipulated part)

Thursday, October 23, 2014

Type Two Diabetes: The Media, The Myth, The Shame and Blame (on CBC)

I don't have type two diabetes. But people I love do.

Our national news, published this article about type two diabetes.


Go ahead, read it.


Back now? Are you as frustrated as I am?


Ok.


First thing is first, this is about an aboriginal community/reserve just minutes from my hometown. This article hit me hard, because it is a community I am familiar with. It has its struggles, like most aboriginal communities in Canada it battles with so much. Health is one of these many battles and Eskasoni is not left out.



Graph from The Office of the Auditor General of Canada
http://www.oag-bvg.gc.ca/internet/index.htm


This article is borderline libellous towards type two diabetes.


Let's go paragraph by paragraph:


"The Cape Breton District Health Authority, which includes Eskasoni, has the highest rate of diabetes in the province according to a 2011 report released by the Diabetes Care Program of Nova Scotia."


That was 2011. I don't doubt that it has the highest rate of type two diabetes (type one actually has a very different demographic and doesn't necessarily settle in Eskasoni-there are much denser pockets on the southern parts of NS) But come on. It is 2014, are there actually NO other stats on the instance rate of type two diabetes in Cape Breton since 2011? If there isn't then what spurred this story? Why now? Why have we waited THREE years for this story? 


"The prevalence of crude diabetes in that health authority is 12.3 per cent of the population over the age of 20. That rate has been steadily increasing since 2004."


CRUDE diabetes? What the what is crude diabetes? I have been a passionate and dedicated advocate for diabetes awareness, mental health and diabetes and I have NEVER seen this. To the Google machine. Nope. Nothing. The only thing that came up when I searched for crude diabetes is...this article. I am really not sure what the author meant by crude diabetes. Crude by definition is natural, unfiltered, unprocessed. So maybe they were referring to untreated diabetes? Undiagnosed? Could they have a stat for undiagnosed?


But yes, 12.3 per cent is incredibly high. There are a number of reasons for the prevalence of Type Two diabetes in aboriginal communities. It is a massive growing concern, and it's not just because of diet. There was a $58m investment made by the Canadian Government in 1999 to study the increasing prevalence of Type Two Diabetes in aboriginal peoples. Part of the findings included the rapid decline in the population partaking in a traditional lifestyle and eating traditional foods. The thing about removing an entire population of people from being able to maintain the lifestyle their ancestors have followed for thousands and thousands of years (that's right, Columbus didn't "discover" us) is that it becomes a shock to the system throughout the evolution of the human body. Our bodies (and by "our" I mean most white, European descent folks) adapted over a longer period of time allowing our biology to catch up to the shit we put in to our bodies and do to them. 


Sorry, CBC! Genetics plays a HUGE role in the development of Type Two Diabetes. That's a main focus in the National Aboriginal Diabetes Initiative studies. The rate of obesity in Texas is extremely high (30.9 per cent), yet the state has less than 10 per cent type two and type one diabetes rates combined. Since nobody thought to break it down, and since I have somewhat inside knowledge of prevalence, I am going to guess the stat of 12.3 per cent of people with diabetes means type two-not type one and two combined. 


Seems like a small detail that was over-looked until we get to the meat of the article.



"Helen Sylliboy, who is one of thousands of Cape Bretoners living with diabetes, finds it harder to get around her kitchen these days. Diabetes has blinded her in one eye and damaged her kidneys, and her severe arthritis keeps her in a wheelchair.  "It makes me sometimes feel sorry for myself and cry because I know I could have avoided it if I just took care of myself," she said. "If I had just eaten right, lost the weight and exercised." Sylliboy goes for dialysis treatment three days a week. She said it makes her angry to see so many people in the community ignore their health and develop diabetes. "I'd like to smack em' one. The diet nowadays is pizza, pop, chips, that's garbage. You're just filling up your gas tank for a short trip down the road to kidney failure and diabetes," she said."
My heart bleeds for Ms. Silliboy here. The self-blame she is feeling is astonishing. Even more so the glorification the CBC is doing of the self-blame. If I could talk to Ms. Silliboy, if Dr Mike Vallis could talk to Ms. Silliboy and help her. Someone PLEASE help her.
Ms. Silliboy: This isn't your fault. It's in your genes. While taking care of yourself is vital to living well with diabetes, it doesn't mean that you are guaranteed a life free of complications. You don't deserve the hardships you have received, you don't deserve the comments that you receive about your life and your health. You don't deserve the mental abuse you are doing to yourself. You can't help it. This is what is taught to you in the clinics, in the news paper, online and through the media. You have been told again and again that it is your fault. Ms. Silliboy, it isn't your fault. It doesn't matter who's fault it is. You're not alone, you're not to blame. Give yourself a break, you deserve it. 
If you happen to be reading this, please go to www.youcandothisproject.com and see for yourself. 
"Sylliboy wants people to start eating better and getting exercise so they won't end up like her."

First of all, this is no guarantee. There are hundreds of thousands of people in the world who are young, fit, athletic and living with type two diabetes. The research is happening to figure out why, I don't have an answer. I wish I did. I wish THEY did. I wish that there were more news centres running the articles about that research. Joslin Diabetes Center in Massachusetts is one area researching this.

There are millions of people in  the world who are obese, eat pizza pop and chips every day and who do not ever get diagnosed with diabetes.



""Health authorities really need to start to consider how they can support First Nations communities and the provision of more health services within First Nations communities," Rudderham said."
This I can agree with. However, sending a press release and further allowing an article like this to be printed is doing exactly the opposite of helping the problem. The glorification of the myriad of issues Ms. Silliboy is experiencing will not help Ms. Silliboy or her neighbours in Eskasoni. It will not focus resources from our already limited Cape Breton District Health Authority.
Here's the thing. When news articles like this, with this tone get printed it propels the public vision of diabetes being self-inflicted. It gives the public, and therefore our health authorities, the right to blame the patient for what is happening to them, when it very well could be genetics....when it could be anything. When it shouldn't MATTER why someone is diagnosed with type two diabetes, it seems to be the only thing that does matter to the media. Then, in turn, it's the only thing that matters to the public.
When the media publishes this kind of glorification, our charities get a slap in the face. When we call donors for money for research to help fund and fix people like Ms. Silliboy, do you think dollars come our way?
What if a major donor to the Canadian Diabetes Association reads this, sees that it is the patient's fault and pulls their multi million dollar investment in to research because it is seen as a preventable disease? When there is research (that those dollars are being used for) happening right now proving that it isn't always the case.
"She believes the high rate of poverty in the community is forcing people to eat poorly and could be driving up diabetes rates."
I believe the high rate of poverty in the community is limiting access to proper health care (physical and mental), education, and assistance that is much needed. I guess we can kind of agree on this.
The tone of this article is atrocious. The glorification of the despair Ms. Silliboy feels because of self-blame is horrendous. I expect more from our national broadcaster, and our Cape Breton District Health Authority, I truly do.
To the CBC and The Cape Breton District Health Authority:

STOP THE BLAME GAME. END THE STIGMA.



I want to briefly note that the use of the term first nations and aboriginal peoples has always confused me as to what is correct. To err on the side of following the story I used language from the CBC article


Resources:


http://blog.joslin.org/2014/05/thin-and-type-2-non-obese-risk-factors-for-developing-diabetes/
http://www.hc-sc.gc.ca/fniah-spnia/diseases-maladies/diabete/index-eng.php
http://www.stateofobesity.org/states/tx/
http://www.hc-sc.gc.ca/sr-sr/pubs/hpr-rpms/bull/2003-5-aboriginal-autochtone/index-eng.php
http://youcandothisproject.com/
http://www.research.utoronto.ca/why-do-aboriginal-people-experience-higher-rates-of-diabetes/

Monday, October 20, 2014

Take a breather.

When I listened to Joe Solo talk a few weeks ago he gave very smart advice on handing the ownership of the diabetes over to the child with diabetes from the parent.

This is one sticky subject that I can never seem to be able to approach with parents of CWD because I am always nervous to offend, and I don't have a child. However, I have diabetes. I grew up with diabetes, and I have a great deal of concern for others living with diabetes.

I saw, in passing, a parent of CWD comment that they would love to have the cloud/CGM in the cloud set up for their child who is going off to university soon. My alarm bells were ringing. As I continued to click my way around other social media sites, I saw another parent ranting about how their 18 year old child doesn't check its blood sugar at 3 am so that parent was checking blood sugars at 3am.

Dear parents: give yourselves and your child a break. If your kids are in their late teens, they should be managing their own blood sugars. I say this because I lived it. I also say it because it was backed by Joe Solo, and I thought if he shares my opinion, then there has to be something there.

Here's the thing, once we become adults, parents don't get to have ownership over our health. They get to be interested, and they get to care and love and be concerned, but not monitor everything. In order to grow, accept and flourish with T1D we need parents to cut the cord.

We need to make mistakes. We need for our parents to chastise us for the mistakes, but not for the outcome.

What I mean by that is: if a high school student doesn't get up at 3am to check, and wakes up low at 4:30 am and eats 150g carbs and sleeps without correcting and wakes up super high, the high school student needs to be chastised for being irresponsible...not for the high blood sugar. It should get the same attention that missing a curfew, or not doing an assignment can do.

And I took that example directly from Joe. He knows his stuff being a CDE and a family therapist and all.

I just really feel for parents who are always stressed. I wonder if part of it is because they feel they are trying to take some of the 'stress' of living with a chronic condition away? Here's a hint: you can't. You can't fix it right now by staying up and checking someone's blood sugar, monitoring their food intake,  or making sure they rotate their infusion sets. You can't take away that your child is living with a chronic illness. I know you want to, some parents more than anything in the world they would take that burden away. But you can't.

What you can do is fundraise. You can fundraise for JDRF, Diabetes Hands Foundation, Spare a Rose or any of the various diabetes charities. This means the world to me. When someone I love fundraises for my future it means more to me than any number or any question or expression of concern ever could.

You need to give yourself a break. Your teenager and young adult needs you to be their parent, not their pancreas. They should know to check their blood sugars throughout the day and if they don't you chastise them just like if they don't do their chores that day. You don't tell them it's because they could lose their kidneys or eyes or legs, you tell them because in order to be a functioning member of society, they have to live within boundaries and respect the fact that they have an extra task in life.

I know that I sound preachy and like I am dictating how to raise a child. I am definitely not. I don't know how to raise a child, but I know how to raise a diabetic.

I am saying that as a person who grew up with diabetes, using much scarier and less predictable insulins....we want our parents to take a break.

We want you to step back and trust us.

We want you to know that it is going to be ok.

As your (probably) peer, I want you to be healthy, happy and to live life to the fullest.


Please note this is not in reference to young children. If you wouldn't trust your child to cook themselves a grilled cheese or be able to stay home by themselves for a few hours, this probably doesn't apply.

Wednesday, October 15, 2014

Of ankles and pickles

I think diabetes  makes a person in to a control freak.

We need to have control over all of our food intake. And medication. And exercise. And blood sugars. And life. And and and.

So on Monday, a holiday, I set out to take my dog for a nice run, after reducing my basal and eating a nice lunch. (Check, check and check)

My blood sugar was 8.3- Perfect before cardio. (check)

As I took my last step off my front steps, I hit the walkway the wrong way.

Oh, it is a thing of beauty isn't it?
I hear a crunch and a pop.

I face plant on my gravel driveway with a bag of garbage in one hand, that was on its way to the bins, and my dogs leash in the other hand.

I lay for a second, peel the rocks out of my lip and hands....and I feel the all too familiar pain.

It starts to radiate up my leg.

The nausea starts to sweep upward and roll waves over me.

I immediately got up, and hurried the dog inside, I had a matter of minutes before the adrenaline wore off.

I methodically gathered everything important- laptop, blood sugar kit, phone. Threw it all in my living space. 

I iced my ankle. The stupid left ankle.

The swelling begins and my right knee starts to drip blood.

I reset my pump basal and check my blood sugar- 16.4. So it begins.

My friends for the next few days.
Correct and move on.

I watch some Netflix.

It's been two days of this. Fighting swelling, fighting high sugars due to stress on the body. My favourite carb free food? Pickles.

What do pickles do? Cause swelling and water retention.

Full circle.

Damn you ankle. Damn you pickles.



Thursday, October 9, 2014

Dude I'm so high

It always happens in the weirdest of situations.

You're just minding your own business, doing your work.

And you're on a conference call, let's say and you are typing and all of the sudden the keys on your keyboard are just a little bit too soft and are taking a little extra effort to hit. You slowly gaze down, and notice that your fingers look normal, but why do  they feel like cement bricks on the end of your arms?

Then, you notice it. Your heart, it is pumping so loud you can hear the blood in your face, it's pooling in your cheeks. You look around and your eyes take longer than usual to adjust to your surroundings. Blurred vision and sticky eyes.

You try and swallow between the cotton threads that have conveniently replaced you tongue, teeth, throat and entire fucking mouth. When you get what little saliva has remained in your mouth you feel the backlash, vicious heartburn.

Water. You need water. GET water.

Drink water.

More. Drink more.

Its the magical cotton that only exists where your mouth once was.

You're so high.

Someone asks you a question on the conference call and this is what your answer is:


Correct and move on.

Wednesday, October 8, 2014

Saturday's Finding Balance with Diabetes Conference

Part of my job at JDRF is to help the outreach in the community. We have a small budget for outreach....and by small I mean non-existent pretty much.

I don't care.

That's my passion, it's important. I push to make sure that we are meeting needs of people living with type one diabetes until there is a cure.

Less until none.

Less doesn't only mean less needles, less finger pricks. In fact, to people inside the organization and people who get it...less until none means less burden of living with T1D.

So I set on this mission. I wanted to bring people affected by T1D together in Halifax and hear some people talk about the stuff beyond the numbers. I wanted to bring people who knew about living with diabetes and I wanted them to share their expertise. Our community needs it. We need to branch out from relying on our numbers and focusing on whole body diabetes management.

Without focusing on the psycho-social impacts of type one diabetes you are only managing 50% of the disease.

That is a concept lost on endocrinologists, medical doctors, (some) certified diabetes educators and nutritionists. It's something that you won't hear in your yearly 15 minutes of fame at the doctor's office.

So I worked hard.

I nailed down sponsors, I worked with the JDRF Canada head office. I found a location, and then I found another when we outgrew the first. I picked a menu that would fit a person with diabetes' lifestyle.

I developed the promotional materials, I made phone calls and lined up speakers. I bounced ideas off my co-workers endlessly and gathered opinions and hoped it would look like I planned.

So I brought in Kerri Sparling  to teach us about the importance of finding your community and what the diabetes online community can do. If you're reading my blog, you have read her blog. But if you by some freak chance have not read her blog, click on her name. Go ahead, I'll wait.

And I brought in Joe Solo. If you're reading my blog, you know who Joe is. If you don't go ahead and click his name. I'll wait.

And we also had Dr. Mike Vallis. Dr. Vallis is well known in Halifax. He is a health psychologist that focuses on the difficulties of living with diabetes. So basically he is a pioneer in the world for what this conference was covering.

It was an awesome day. I felt the vibe in the conference was welcoming, there was a good mix of families and adults with type one diabetes. There was so much that I could tell you about the meaning of all of this. And I could go on and on...and on

BUT.

Kim Vlasnik did it in a way that is heart wrenching, gut churning and tear jerking. And TRUE.

TRUTH.

Watch. This.

Now.

And then go read her blog. And if you're lucky enough, meet Kim in person, she is as charming, caring and hilarious in person as she is online.


Wednesday, October 1, 2014

Being balanced is key

I am in my 25th year living with diabetes.

It hasn't been all pleasant, or easy. There have been days where I have felt trapped, ignored, jaded, and angry. Everyone living with a chronic illness has days, weeks, months and years feeling like this. It's important to recognize that this is part of living with the disease. We should never hide the fact that there is a psycho social effect in living with T1D.

I think we, as a community, should hold the responsibility to help others out of the dark places. I think we, as a community, are ultimately responsible for the public perception of what life with type one diabetes is really like.

This is truly displayed when things like #dayofdiabetes pop up. I urge people to step out of their comfort zone and take part in these things. To rise above their discomfort with sharing their day-to-day life with diabetes and show your twitter followers or Facebook friends that life with diabetes isn't always climbing mountains, or runs across a country.

What I strongly discourage, and I feel I can say this since I live it, is people promoting that life with T1D is absolutely awful 100% of the time. That is as much of a lie as people stating it's a walk in the park, a gift, or a great thing.

There is a movement that was started by one mother, pictures of (mostly) children (though there are some adults) posing as though they are jailed by diabetes. When I first saw this I felt sad that those children felt that way, I felt sad that the parents portrayed diabetes that way. I let it sit for awhile. I read the blog post a few times. I get it. I  get why there is a movement happening. I live it. I am diabetic. I know this disease. I eat, sleep, breathe AND work with this disease.

I mentioned yesterday that I felt this was a misguided movement. I put it on twitter, very openly and engaged with a few members. They both immediately asked if I read the blog post because that explains it. I assume a lot of people don't read the lengthy post, so they only see the negative side effects a movement like this can have on people.

And that's where the problem is.

The people who started this movement aren't bad people, they're trying to help convey all sides of T1D. I know what they are trying to do. I don't think they are conveying their message effectively. I think the message the snippet of a child in a prison photo gives is off-base for the movement they are trying to push.

In today's advocacy, fundraising and awareness environment you have a few seconds, a glance at a photograph, a few words to convey your message. You have 140 characters, a hashtag or a ten second video to explain your entire world to people. I think these pictures are not conveying the message in the blog. I don't truly believe the children in those photos feel that way all the time. I was one. I AM one of those people. If they do feel that way all the time, to the children and the parents: there is help, please do not hesitate to get the help needed to deal with chronic illness.

This isn't always bad. Honestly it isn't. Just because it isn't always bad, doesn't mean it should have less respect or knowledge from the public. I think we have to be more balanced in how our movements and advocacy brig awareness to not only T1D but our community. On both ends.

When we are dealing with social movements and advocacy the whole world is watching. We must be diligent and mindful to present a balanced representation of our lives.


If you feel that you are living as a jailed person with T1D. If you feel you are trapped in an awful life with diabetes, here are some resources to help you. I urge you to speak with your healthcare team to make sure your psychological well-being is looked after as much as your physical. It's so important.

Canadian Diabetes Association: Diabetes and Depression

Canadian Diabetes Association: Diabetes and Your Emotions

American Diabetes Association: Does Diabetes Cause Depression?

A Mile in My Shoes: Joe Solo

Diabetes Burnout: What to Do When You Can't Take it Anymore

Tuesday, September 30, 2014

It's been awhile

It's been awhile.

Months.

It's like time goes through my hands like grains of sand these days. One day it's hot and I want to be on a beach, the next I am folding up capri pants and hanging my winter coat out to freshen up.

Change of season, specifically summer to fall, always makes me feel nostalgic, a little down and always filled with wanderlust. The fall has always been a great part of my life, it's my favourite season (if you were from my neck of the woods and drove down the highway-you would understand why.)

Some of my favourite fall memories are from when I was in university. The anxious feeling of returning to school, scoping out classes and friends and being put under pressure to perform at my absolute best.

This push for perfection always was slated to being in September. I always had a deadline to get myself back in line.

I find myself looking for these lines now. In work, in diabetes care, in mental health care...

I find myself making these lines in the sand for myself. Giving myself the okay to have a few days of feeling down, but recognizing I have to put a little extra effort in to bounce back by said line.

So I am doing that. October was my deadline to get back on the blogging train and do it for me, and for people who have read in the past and really enjoyed it.

October was my deadline, and it's only September.


Monday, August 4, 2014

No, really?

I had one of Those Lows last night.

You know the one.

I woke up feeling anxious. My pillow and sheets and pjs were soaked. My stomach was in knots of hunger and my brain felt like it was vibrating. I grabbed my bottle of glucose tabs off my bedside drawer and dumped five in my hand and put all five in my mouth at once. I pulled my pump o ut to check my CGM and notice it has been out of range for 40 minutes (I must have been sleeping on my transmitter).

I check my blood sugar while using every ounce of energy to chew the tabs.

Hands shake so bad when you need them not to.

My meter came back.

(~33 for my US friends)

10 Glucose tablets and a slice of bread with peanut butter, and a glass of almond milk with an upward arrow on the CGM later.....I slept like a baby.

I woke up at 5.3, like a champ!


Monday, July 28, 2014

I give you a gif story

Today I bring to you a series of photos that describe how I felt at 5am this morning when I rolled over and tore out a 2 day old infusion site that had been working so perfectly my blood sugars ranged from 4-6 for 48 hours straight.











And then You lay there for 20 minutes contemplating if that 1 hour of basal insulin is REALLY important enough to get you out of bed to put a new infusion set on. Because who really thinks the dawn phenomenon is breakable anyway?



And then you put a new site on, and hope for the best...by the best I mean to sleep another hour to prevent a massive mood swing later in the day.




AHHHHH LIFE. THANK YOU STARBUCKS FOR BEING RIGHT BELOW MY OFFICE.




None of these photos belong to me. They belong to the Internet, and the original artists who have been ripped off so many times now I can not source them.

Tuesday, July 22, 2014

My Friends For Life Experience

Sometimes I think I kind of sound like a broken record in my advocacy efforts. I am a passionate advocate for fair, judgement-free treatment and understanding of diabetes. Sometimes this can lead to difficult conversations with people who are either not willing or not able to understand life with diabetes for various reasons.

Part of why I write, tweet, Facebook and blog about diabetes life isn't just for me. I do it because a lot of people don't have the same passions I do. And that's ok. I am a strong believe in the saying "it takes a village."It takes a village of people with varying skills, knowledge levels and passions to move anything forward, including advocacy, health care, products....anything.

Sometimes though, I am stuck standing there scratching my head because I don't know what to say, do or think next...and that's kind of how I have felt since returning from Friends For Life a few weeks ago.I have all of this new and important information, connections and conversations that happened and I am trying to put them in order....which is a bigger struggle than I thought.

 So, on with it. That's what today's blog is about. I already addressed Masterlab, and my personal struggles with being diagnosed with my first ever diabetes complication . Now Ill address the other two days of intense conferencing.

Thursday, July 3 started out with Moira McCarthy, of www.despitediabetes.com giving an opening keynote on everyday superheroes. A lot of times we are spoken to about the wonderful things all of these super humans like Ryan Reed, Charlie Kimball, Sebastien Sasseville, Miss Idaho, Kris Freeman etc etc etc, are doing with diabetes. We can sometimes get lost in the fact that everyday living, living a normal life in a positive and healthy way is pretty awesome when you have Type One. As much as I respect the superhumans mentioned above, it was refreshing to hear from someone who is living  normal life, as a normal parent with a normal child, who has a normal job for a change. Moira has a great positive energy. Cutting ahead, we enjoyed a few cocktail on Saturday night together one on one and she gave me some great tips and advice on some things that I struggle with when speaking to parents of children with T1.

After her keynote, I had the pleasure of seeing Gary Scheiner of Integrateddiabetes.com speak. So, fun fact: two years ago I read his book Think Like a Pancreas and it totally changed how I treated my diabetes and insulin. So much so in fact it lowered my A1C from 8.8 to 6.1 over a two year period. He spoke about Strike the Spike and how important pre-bolusing is. He got in to the science of how our body uses certain types of foods and how we can trick our body in to reacting to our insulin. It was informative. Even better was being able to meet him, tell him his book changed, and probably extended my life by many years. I choked up when we had our one-on-one chat. As you may learn from people like Bill over at Glu: opening up and choking up at Friends For Life is common and to an extent, encouraged.

After his session I quickly dashed to catch Dr. Alessio Fasano to chat with him about his work with gluten intolerance, and autoimmunity and the gut. If you haven't seen or heard about his work: keep a close eye on him. He is going to have a major break through, I just know it. I don't say that often, I am reserved with my use of the "c" word and breakthroughs....but this guy. He is approaching autoimmunity with a different mindset than other researchers I have met or read about. I would also like to note that he is HILARIOUS, approachable, funny and gave me a big hug when I told him I want him to take all of my blood if it means feeling better now and in the future. (For the record his team did take a lot of blood from me, and I am waiting anxiously for the results. I have been having GI problems, I am left wondering if it is hereditary IBS or Celiac...his tests will let me know)

Later that afternoon I attended another session by Gary Scheiner, and one on complications.....I will say that it was an overwhelming day of sessions. Very overwhelming. That night we had our banquet and I had my first 4th of July experience and I was a little culture shocked, but I loved every minute of it.

The 4th of July was much like the 3rd.

My major-breakthrough sessions that I experienced at FFL happened one after another. The first was Self Care and Stress Management for Adults with Type 1 put on by Dr. Bob Bulgarelli. He opened with a lot of science and facts that I couldn't wrap my head around. Then a person in the audience asked a question that turned the entire session on its head. I won't say who or what was asked, since it was a room of confidentiality (meaning it was a safe space and nothing left the room), but it rocked. Dr. Bob taught us a way to let go of points in our past that have affected how we deal with stress today in negative ways. There were lots of tears, sniffles and sighs during his guidance. We all closed our eyes, got on an elevator and visited hard points in our lives. It sounds crazy and fluffy but in the moment it was exactly what everyone needed. He then taught us the basics of meditation. I had a very intense experience, not something I am used to. I wasn't expecting it. In fact I was skeptical of the meditation...and then I experienced it and what started out as a bit of embarrassment on my part for  how I reacted to the feeling of meditation actually turned out to be how you are supposed to react.

The second session that day for me was about incorporating your friends, family and spouses in to your day-to-day diabetes care so  they can feel included, but also to feel less burdened yourself. It was an interesting session to take in. I do want to include T in my care more. I know he is learning a lot. But I walk the line of not wanting to seem like a burden on him. He signed up to be with me, not to live with diabetes himself...and I don't ever want him to experience that. It was great to experience to hear from all of the other people''s experiences. Special props to Jess' (from MeandD) husband who gave us the other side...

As a side: I have always wanted T to try an infusion set, and use my old pump for a day or two. He has no interest in it, and flat out refused, and that always kind of hurt me. But Kerri mentioned that her husband just doesn't want to feel sorry for her if the insertion hurts. Which makes sense. So I am practising letting that go.



All of this has lead to something big that I will be doing locally. I will tell more about that once it is set in stone. It's exciting though :)








Monday, July 14, 2014

The concept of a Chosen Family

Awhile ago I posted the following photo on my Instagram feed


And it said "the best chosen family." As the caption. And it's true. I stand by that.

But then I noticed an aunt, then an uncle favourited the photo and I sat back and thought....I hope they don't think I am replacing my blood family with my chosen family.

Because I'm not. There are people who probably should, but I am not one of them. I never was and I never will be.

But it got me thinking about how important my two families are to me just in different ways. They fill gaps in my life that I truly believe are unique when you're living with a chronic illness.

My family, my blood family, my mother, father, brother, grandmother and most my aunts, uncles and cousins are wonderful. They know my history, they raised me and taught me what am advocate is. They taught me how to do daily things like money management, living on my own, how to drive a car, how to be tolerant and patient. They taught me love, and critical thinking and...so much. I can't list everything I learned from my blood family.

But the diabetes community, my chosen family, taught me self acceptance, awareness and understanding in a way that my blood family simply could not. 

When you live with a chronic illness I truly believe that a vital part to your treatment plan needs to include support from a community. 

And that's what a chosen family is. It's a group of people who are there for you no matter what happens, who are there and they say "I get it, I understand, me too"

But they don't have to. That's the differnce and that's why they're chosen.

Thursday, July 10, 2014

Friends For Life: #Masterlab



Last week at the Friends For Life conference I attended #Masterlab which was put on by the folks over at Diabetes Hands Foundation. I was a little nervous, it felt like a first date in a few ways. I was meeting so many people that day that really helped shape who I am as a diabetes advocate, blogger and member of the onnline community.

Let me say this first: I was greeted by Mike Lawson, who scooped me up  in the friendliest, warmest hug before even signing me in. It put me at ease and did you ever get a Mike hug? If not, you're missing out.

There was a big discussion to start things off about the state of federal regulations and diabetes and how it affects us. It was hard to wrap my head around since I was trying so hard to Canadianize it in real-time. I have never heard of Health Canada having an open discussion with a patient community and I think that it is time to change that. I will be doing some research into the Canadian equivilant of open dockets. I can only hope we have someone as open to hearing from patients as Stayce Beck from the FDA is.

We also had the pleasure of hearing from Mike Mangianello from HCM strategists. Mike was an advocacy pioneer in the 80s and 90s during the HIV/AIDS crisis in the US. He gave us a little fire under our feet to mobilize ourselves. I believe that he was quoted by almost everyone in the room saying "The diabetes community is a sleeping beast that needs to be awoken. And he is right! We are one of the MOST common chronic illnesses in North America. People are scared to speak up because of the shame we feel and it is time to stop it. He was extremely inspirational and smart.

We finished the day off with hearing from people in our very own community talking about several very successful advocacy campaigns such as Bennet from Stripsafely and Kerri spoke about the Spare a Rose campaign.

Keep an eye out at diabeteshandsfoundation.com/masterlab and you will soon be able to see a video of the whole event.

Wednesday, July 9, 2014

Friends For Life: Eyes.

I am still unsure of what I want to write here.

I attended the Friends For Life conference last week. It was incredible.

The feeling of being surrounded by green bracelets, and people who can say "I get it" is un-topable. I had a lot of people question why I came all the way from Canada, and I never had an answer for them. I usually explained that it was important to me.

I have a lot to unwrap about the conference and I intend to do so, but I  just want to get something off my chest that weighed me down a bit.

I had my eyes checked.

I always get my eyes checked, I go see a specialist every year to get my eyes checked. So I wasn't worried. In fact they pulled me in, in the hallway after I registered because there was nobody in their seat. I wasn't afraid and I let them know that it was truly unnecessary because I was Canadian and I had coverage and I wanted someone without as much privilege as me to have a seat. But they told me to have a seat and look at the dots and coloured crosses.

I did so.

And they printed out my results, and she looked at the results quizzically with a slight "hm" under her breath. The doctor looked over with her and said some things I don't understand and then he said "You need to go to the dark room just over the stairs so they can look a little closer. It might be totally normal, but it's good to check."

I further pushed back, explaining that I have my very own doctor, the one who smiles big every time I have a check up and says "No diabetes eyes for you!", in three months. It's fine. I am fine. I don't NEED to see a doctor. They insisted.

I was worried. It was a 45 minute wait to see Dr. Ben. I paced in the hallway picking at my new green bracelet. I read everything about the studies they were doing. I closed my eyelids one at a time and made sure there were no spots or blurry visions.

I was fine.

Except I wasn't. I went through around 10 more tests and squints and "yes I wear glasseses" before I spoke to Dr. Ben and what he saw. He saw two bleeds in my left eye. He explained they were very tiny, but they were close to the macula so it was important to follow up. He said they will probably fix themselves if I keep my blood sugar in range (ha!) and exercise like I have been. He told me to make sure I mention all of this to my doctor at home because he may not see them due to the special equipment he had.

I thanked him with a very shaky hand shake and didn't know where to go. I just kind of stood in the hallway leaning against the wall wondering what to do. I closed my eyes tight trying to feel or see anything different but it was just normal. My blood sugar was normal, my A1c is below-normal, my exercise is great, my blood pressure is fine, my diet is good...what can I do? Just wait.

I didn't do anything wrong but the overwhelming blanket of guilt just started to smother me, so I started to walk-quickly. I wanted to breathe some fresh air before I lost it in front of all of these strangers scurrying by me. I went outside and gathered myself before I met my friend and headed to Universal Orlando-where we had a good time.

For the record I now have a new appointment  next month with my specialist.

Unfortunately this weighed on me like a big secret. I didn't want to bring anyone down, especially myself. But now I regret not leaning on some of the people who would have understood the most.

I promise my other FFL posts will be more positive and informative, but I needed to unload that.

Tuesday, June 3, 2014

Mike's Marathon

I have a confession.

I have a friend-crush on Mike. It's not a secret. In fact I think during a conversation on Facebook I stated "I like you. Let's be friends. Can we be friends?" And he obliged.

SO I guess that means we are friends.

When I go to Friends For Life this month (!!!) I will meet so many of my online friends. All of these people who have helped me navigate the weeds of T1D in the past few years will be in the flesh and possibly doing friend things with me. Like asking for a piece of gum or....a dex tab. I am excited!

I am excited that Mike will be one of those people.

Wanna know why?

I mean, he has done amazing things. But he is going to run a marathon next year. And not only that, he is documenting it all. For everyone to see.

Thank you Mike, on behalf of SO MANY people who feel like you do about exercise and running.

Here's Mike's first video, uploaded April 1, 2014.



You can subscribe Mike on YouTube here


Wednesday, May 28, 2014

OneTouch Verio IQ Review

It's not exactly a new meter on the market.

Not by a long shot.

In fact, this is my second chance I have given to the Verio IQ. I give it a solid 4/10.

There are some really great features that Lifescan got right with this meter. I think the display and the port light are the two main features that have kept me from going back to my Contour USB meter by Bayer (which, for the record, I adore). Lifescan/Onetouch has had its grips on me for five years first due to my Ping pump and meter combo, and now this damn backlight, I just can't quit.

Unfortunately my positive feelings about the meter stop there. The strips and the battery are probably the two biggest culprits of failure for me. 

How does that even happen? I'll tell you: flimsy strips. These things can not take a beating, at $1 a pop, you would think they would be able to stand up to a little more. You have to be VERY careful when removing these from the bottle, and twice as careful when trying to alight the two little "teeth" with the test strip spot. When you're shaking because your blood sugar is 2.5 and it's 3 am and you're trying not to wake anyone, getting that flimsy strip in just the right spot.....totally infuriating. I have ruined more than my fair share of strips from them bending and breaking so easily. Also, the side fill? for the birds.

I just want to touch on the rechargeable battery for a second. I have to carry a cable around to charge this thing now. If it does when I am out I have the option of charging or having an extra meter on hand. Neither are as easy as having an extra AA battery, or having it be able to charge via directly plugging in to a USB. I don't have space to carry another clunky cable around. 

I don't think this meter was designed by a person who actually had to use it on a daily basis. I think it was designed to look cool--like a cell phone. And while that does have some minor appeal, the fact of the matter is that I believe I speak for most people with diabetes when I say we prefer function over form. 

I may be tossing this guy to the side 300 tests from now. (That's how many strips I have left)


Monday, May 26, 2014

It takes a village

We always go back to community.

I am a firm believer in the saying "it takes a village" in almost every aspect of my life. I think it applies to raising great children, completing excellent work, creating safe and happy spaces for everyone and of course to diabetes management.

As I am in a frenzy of planning the 2014 JDRF Walk To Cure Diabetes for Halifax, I am noticing how important the local diabetes community is to me in my day-to-day life at work. I lean on volunteers, and my peers for advice, support and knowledge every step of the way. Even the largest of tasks, which can seem insurmountable, are made a bit easier by our community.

While I wear several hats at our JDRF chapter my two key responsibilities are planning and executing our walk in Halifax and ensuring our outreach program is successful. I am passionate about both areas of my job, but the outreach is what I think has the most short-term return for the community. I think the fundraising we do for the walk is vital and important, and I wouldn't have a job or probably my pump without funding the research we do, but that outreach program speaks to me.

In a world where we are encouraged to always be better and do better and fetch for ourselves, we are often left to our own devices when planning our own paths to leading healthy and happy lives. I think having a support system is vital to healthy treatment of diabetes.

It's part of why I took this job. I want to ensure that everyone has the option of easily finding their community to better treat their diabetes.

It's more than numbers, food and insulin. The more we say it out loud the more people will believe it.

Friday, May 16, 2014

D-Hacks

Today's post for #DBlogWeek is supposed to be on Diabetes Hacks, or hacks that make your life a bit easier with diabetes.

I only have one that may, or may not have been mentioned already.

When you use an Inset II infusion set you can save yourself a lot of sharps space.

When you insert your set, and you're left with teh spaceship disc like thing, you can remove the sharp with a set of tweezers. You can dispose of the needle and then recycle the plastic part :)

I have slacked this week. Diabetes took over my life a little bit, I'm good, but I needed to not think about it when I could take the chance.

Wednesday, May 14, 2014

What Brings Me Down

I skipped yesterday's topic of a poetry slam for diabetes because I haven't written poetry for years and years and I am relatively disinterested in  poetry on a whole.

However!

Today...

Well....

My body can be a mess. When I get something as simple as a paper cut there is an entire emotional process that happens. I have to be wary of where the cut happened, when, how clean the area is and take immediate action. I have to wonder if this will be the cut that limits mobility,causes and infection and potentially points to complications. Will that envelope be sealing more than the letter contained? Will that envelope push me down a slope of "why me? what did I do? can I go back to normal?" There are days where I sit on the edge of my bed after a shower, I go over my body inch by inch (and there's a lot of inches). I check for cuts, scabs, dry skin, spots, lumps and anything that may be out of the ordinary. I trace cuts that may be slightly inflamed with a pen and make sure the infection doesn't grow. I squeeze my nails to make sure that the pads underneath fill with blood quick enough. I have only ever had one cut get infected so bad I needed medical treatment (antibiotics) and it was on my chest, of all places.

It's those days, the days I scan myself with baited breath. The days I recollect every fold, lump and scar on my body that I am reminded that my body is only partially mine. The days that I am reminded that outside forces are doing everything they can so my body can be re-claimed, but until then my immune system will always be on high alert. My immune system is on its own. My immune system gets confused and attacks its own cells sometimes. My immune system comes before everything else in my body and sometimes...

Well, sometimes my body isn't mine, some days we live in fear of what we might have done or be doing to ourselves.  But even worse, what we have no control over.

And that gets me down.

Tuesday, May 13, 2014

#DblogWeek: A ressurection

I feel my blog dying.

Not out of disinterest, just out of insecurity of what to share. I have all of these questions, but I never know if I want to publicly ask them. It's a change I am adjusting to.

So for that I thank Karen over at BitterSweet Diabetes for engaging me in a dblog week. I need prompts these days to write.

Today's prompt: "Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. "


This is a very interesting topic considering my recent career change. I have a lot of things that really "fire me up". I am most passionate about ensuring that people have access to the support they need while tramping through life with T1D.



Since starting work for JDRF and really thinking about the line "treat, prevent, cure" I think that a vital part of treating our diabetes is having access to the psycho social support required to take care of ourselves. Diabetes is linked to mental illness, anxiety, depression, isolation....without my network of people with diabetes (on and offline) I don't think I would be as healthy today. I wouldn't be able to do my job as a fundraiser, I wouldn't be running at the gym or walking my dog or planning camping trips. We have all been down the dark, scary road of not caring....and I want to help people realize that they don't have to go it alone.

Monday, April 21, 2014

Animas Vibe Rollout

Last week I started on the Animas Vibe after an uphill without a paddle battle with my insurance company. My Insurance coverage is good. It clearly states in my booklet that I have coverage for an Insulin pump AND for a Continuous Glucose monitor. This is almost unheard of in most Canadian policies, so when I started this job I thought of how wonderful and easy this was going to be.

My Animas insurance rep submitted the pre-approval paperwork and it got denied. I called and explained they couldn't deny, copied them the part of my policy that states they can't deny it and waited. 4 days later I was denied again. I wasn't allowed to speak to the person ("medical professional") that was making the decision. I was spoken to like I didn't know what I was talking about, and our conversation ended abruptly.

I then had to call my HR department at head office in Toronto. Thank goodness for them. And as wonderful and hard working as they are, they still had some difficulty grasping that the Animas Vibe and the G4 transmitter was an insulin pump AND a continuous glucose monitor. The Insurance company declined the coverage because they would cover my pump but not the transmitter or sensors. I tried to explain that the pump/CGM can't function without the transmitter and sensors...otherwise I would stay on my ping.

In the end, after a lot of battles with the insurance company. After a lot of reminding myself that this is not everyone's day to day life so I should be patient with them in explaining. In the end after explosive conversations...I have my Vibe.

Let's get in to that.

So, as most of my readers know I work at JDRF. I used this opportunity to teach my manager and co-worker what kind of technology we are fundraising for. I connected and set up my new pump in a mini-class teaching them how everything works. They have seen it all before, the person in my position before me was also a PWD, so it was mostly an update on tech for them.

Upon inspection the Vibe is slightly thinner than the Ping. But otherwise they looked identical. I went with blue because every pump I have ever owned has been Blue from my original Medtronic 506 to now. I can't break the chain, even if pink was temping me.

My first sensor was a dud. I knew how to insert, tape it and make sure it was doing everything it was supposed to. It kept me up all night alarming for me to treat my high, but fingersticks revealed I was very much in range and this sensor was po-dunk. I called Animas first thing in the morning and they were going to courier one out to me immediately. I got a sensor failed shortly after this photo was taken. Of two sensors I have ever worn in my abdomen, both have failed. Figure that one out!



This was during my switch in meters last night. I am getting rid of the One Touch Ping meter, I like the contrast on the screen but it is suuuuuuuuper bulky compared to the Verio, plus the Verio has a backlight. Another stubborn afternoon high. This time an entire hour of walking and jogging with my dog would budge it. 

This, to me, is the most beneficial screen. It is an EXCELLENT snapshot of what is happening in my bionic pancreas, and how I should plan accordingly. This was a snapshot of me at the gym after running my butt off because I was fighting a stubborn highish for hours. The red arrow is telling me the exercise is doing exactly what it was supposed to do. I can see my IOB, time, everything. It is set to the activate button on top of the pump and I love it. THIS is why I have a CGM.
There are a few features, like a food log, that I haven't really figured it out. But the first week is super successful. I am more confident going to the gym and running, and going to bed. I am a bit more aggressive with my treatments and my insulin regimen.

My starting A1C officially (lab not meter) is 6.8. We will see if I can get down to my target of 5.9 with less lows.

I love data!



Friday, April 11, 2014

My #dayofdiabetes

Yesterday I tweeted and instagrammed my day of diabetes. Here's the storyfied version!

I think it was successful. I ended up losing 10 twitter followers from what I assume was over sharing. But over sharing is how I do my advocacy. It's how I ensure that people understand the impact that T1D has on me and my life. This ultimately helps me fundraise and do my job effectively.

I am super proud of the others that did #dayofdiabetes. You should check out the hashtag on twitter and instagram!

Sunday, April 6, 2014

My Gym Buddies Don't Go To The Gym

....At least not with me.

A few years ago, while browsing through the diabetes online community I saw something magical. I saw a cluster of tweets (specifically started by Alicia over at Surface Fine) of people simply reporting in on their physical activity for the day. Any physical activity counted, and all attempts and reports were met with cheering and congratulations. A simple tweet, 140 characters, was the motivation that people needed.

The group grew and shrunk, and people reported in. Some trained for a marathon while some trained to walk around the block without running out of breath. How you look doesn't matter, how far you run or how fast you run is about as significant as your shoe colour. What type of activity you do doesn't matter, as long as it is considered activity by you.

The whole point of this small...support group for lack of a better term, is to have somewhere to turn to when you need to celebrate the small stuff and when you need encouragement. Nobody judges anyone in this small group of workout buddies. None of us report on weight loss or inches gained, we report on the true successes: battling ourselves.

We may be briefly quiet and someone may send out a nudge for everyone to check in. Some may report back that they didn't do anything for weeks but a tweet is just what they needed. It provides a non-judgemental, non competitive place for people to maintain accountability to themselves and their diabetes (we have T1, lada, and T2 members!)

So three cheers to my workout buddies, even if we don't work out together! Some days, they're all I have to keep me motivated.

Just a glimpse in to our daily tweets:









Here are the links to the Bloggers who are part of the crew, check them out too!
Kelly at Diabetesaliciousness
Alicia at Surface Fine
Jenn at Sweet Zoo