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