The Why

Diabetes Advocacy.  Its a simple name for a website that I created so long ago that I honestly can’t remember the exact date. The name happened when my mother told me to name it what it was…a site dedicated to advocating for people with diabetes.

An online dictionary defines advocacy as “the act of pleading for, supporting, or recommending”.  For years I have pleaded for changes in various aspects of life with diabetes. I have challenged the federal government in regards to their treatment of people with diabetes who were receiving life sustaining therapy.  I have supported efforts to raise awareness and fight for the rights of children with diabetes in schools.  I have recommended the coverage of insulin and CGM therapy by all provincial health programs in Canada.

Why do I do it? A lot of people ask me that question. Some people think that I do it for the money.  That’s pretty funny since no one pays me. I would love to be paid but I have yet to find a way to have that happen.  Is there fame in the world of diabetes? Yes, a few people seem to recognize my name but I am not a wildly famous superstar.  I am just a woman, a mom, and a partner who occasionally opens her mouth on issues that bother her. A few people assume that I do it for my son.

In part they would be right but I don’t just do it for my son.  Every time I hear from a person with diabetes, no matter what the age, I think of them as someone’s child.  I see my son in them and my heart aches.  There but for the grace of God is my child.

I want to get up in the middle of the night for them to give them a break.  I want to be there for them when they are alone and fearing a low that will leave them vulnerable and in danger. I want them to have a “normal” life with “normal” concerns like what will I have for supper not how will I pay for my test strips this month.  I want them all to live their lives to the fullest not live their lives to the fullest with diabetes. I want to wave a wand and make that last part of the sentence disappear for each and every one of them….including my son.

I am lucky.  People share their stories with me.  I hear about your triumphs and your pain.  I cry with each of you and celebrate your victories as well.  My son is very relaxed about his life with diabetes.  He knows that his momma’s got his back but in covering his back, I hope to also cover many others as well.

Why do I do this? Why do I take on challenges for strangers with diabetes? Why do I take my time and resources to share information, create webcasts, and take part in conferences? Because not everyone can but everyone deserves a voice. I do it because I want to fix it for all of you and it kills me that I can’t.  I want my children to know that I tried for them…and for all of the other children out there who couldn’t do it alone. It really is that simple.

The momma bear in me makes me do it.
The momma bear in me makes me do it.

Too Sweet…Book Review

The ask to read the book “Too Sweet” came from someone that I had never heard of before. It was self-published with a title that made me nervous. Too Sweet? Was this going to be a book to toss in the “maybe one day if I am so bored that its read book or the encyclopedia” pile? I really wasn’t sure until I opened the first few pages.

I was instantly greeted with light and humorous prose. After a wonderful welcome to a disorder that “is part of your life forever”, I was reminded that a laughter and a positive attitude are key to making life with diabetes more manageable. I was instantly sucked in and eagerly looked forward to seeing what the rest of the book had in store for me.

As a parent of a child with diabetes, I cannot read a book about diabetes and “know” what the person with diabetes really feels.  I can know the pain and broad range of emotions that a parent goes through but its not my disease and I am always interested in tips for parents or what other parents have experienced.  Too Sweet is written by Laura Kronen who tells us that she was not diagnosed with type 1 diabetes until she was in university.  She states her parents had a much more difficult time accepting the diagnosis than she did. They felt guilty and she felt it was okay to play on this guilt now and then. I literally laughed out loud when I read that Laura felt that her diabetes was her parents’ fault because they supplied her with faulty DNA! She felt that making them feel guilty now and then keeps things “balanced and gives her added attention when she feels particularly needy”.

This blunt, funny dialog  continues throughout the book. Whether she is discussing how finger pricks have destroyed her finger prints and makes her perfect criminal if her book sales fail or the aggravation that comes with the dreaded wasted test strip, you read and learn with a smile on your face.

Laura gives those of us who don’t live with diabetes a good idea of how lows feel by giving them great names like the surprise low, the cranky low, the full but still have to eat low and many more. She also offers some very real advise on everything from pumps (which are not for everyone and she will tell you why) to the glycemic index to alcohol consumption.  She also offers us a glib reminder of how insanely costly dealing with type 1 diabetes can be in a section called  “I need more supplies. Do I have enough money in my checking account to cover them today?”

Too Sweet also provides some great advice on how to handle the emotional side of diabetes. From getting rid of negative friends to learning from your mistakes, Laura makes you laugh as well as makes you think.

I opened this book not expecting much so it didn’t take a lot to exceed my expectations but it did and then some.  As I read each page, I was drawn in deeper and deeper. I appreciated the author’s attitude and ability to make me laugh.  If you want to learn a bit more about living with diabetes and you want a relatively light way to do it, then I would definitely suggest picking up Too Sweet and giving it a read today. too sweet

First Human in Type 1 diabetes Clinical Trial

If you have lived in the world of diabetes for any length of time, you have heard a million stories about diabetes being cured in mice.  We have read about encapsulate cells and stories of islet cell transplants. Most recently we have been listening to the stories of bionic and artificial pancreases. 

This summer I was asked if I would be interested in hearing from a woman who was involved in a human clinical trial aimed at preserving beta cell function.  A person who was involved in working towards a real organic cure? I was very interested.  This is Mary’s story….

I was seated in a conference room at the American Diabetes Association Scientific Meeting in San Francisco watching a presentation of type 1 diabetes (T1D) clinical study. Projected on the screen was a chart with dots and trend lines representing the functioning of each participant’s insulin-producing beta cells over the span of two years. As I squinted to see the detail, it suddenly struck me: one of those dots was me. I was one of those “participants.” In fact, I was Patient Number 1 in the study.
Rewind to March 2011. I had just been diagnosed with T1D at the age of 35. It was a shock for me, as it is for most people, to be diagnosed with a serious chronic illness especially after thankfully not having any medical issues up to that point. After absorbing the shock and starting to understand all the ways my life was about to change, I did what any 30-something living in San Francisco would do…I turned to Google.
Online I found a tremendous amount of information about the disease. “Knowledge is power” tends to be my mantra. But all the knowledge I gained through my searches seemed to lead to more questions, and I found myself looking for answers to what felt like the most pressing question – now that my immune system is attacking my pancreas, how do I make it stop? Nothing I was reading could answer this question. So, I shifted my focus to what researchers are currently trying to learn about T1D. I found a host of studies on sites like clincialtrials.gov and trialnet.org, and many of these studies were in fact seeking to answer the question that was most important to me – how do we stop the autoimmune attack on the insulin producing cells?
One of the studies that interested me the most was taking place right in my backyard. Researchers at the University of California at San Francisco (UCSF) were studying ways to use a patient’s own regulatory T cells (Tregs) to change the activity of the immune system. The study was so new that it had just wrapped up testing in mice. It was just now ready for a Phase I clinical trial in humans, and they were looking for participants! Without much hesitation, I dialed the study phone number. It turned out the study was even newer than I realized; in fact they hadn’t yet enrolled any participants – which explains why they seemed so happy to hear from me! And with this phone call my adventure as a research participant began.
It started with a basic phone screen with the study coordinator, and once it was determined that I met the basic criteria, I met the researchers to learn more about the study. The researchers drew diagrams on the board, talked about the theories behind the Treg study, and expressed a lot of enthusiasm for what they hoped to learn from this Phase I trial. There was also a lot of discussion around the practical elements of the study: the time commitment, the potential side effects, the upcoming process and the details of the procedures. I made the decision to enroll in the study. I was a bit nervous, but onboard.
Once I was enrolled, the real fun began; notably, the many, many blood draws. I found myself thinking, “Seriously – are you going to fill all of those tubes again?” The mixed meal tolerance tests (MMTs), which required me to drink a meal supplement while my blood was drawn every 30 minutes, were the most draining (pun intended) and lasted for up to four hours! And the worst part, the MMTs started first thing in the morning and required fasting, which meant no coffee! I must have complained about the lack of coffee a lot, because the nurses eventually started presenting my meal supplement in a Starbucks-like coffee cup in an effort to make me feel better – or to stop my complaining!
In between these draws, I was told to go home and ‘stay healthy’ (and take iron supplements!). That meant eating right, exercising, managing the stress of work and the stress that comes with adjusting to a new high maintenance chronic illness. Life went on and didn’t slow down for diabetes.
After a few weeks I was scheduled for what turned out to the biggest blood draw yet – enough to extract the Treg cells that would be expanded in the lab and infused 14 days later. It felt like a long 14 days, and the waiting was in some ways the hardest part. It was the anticipation of what was going to happen on the infusion day and wondering if this was really going to work and what might happen if it didn’t.
The day of the infusion arrived. The transportation of the Treg cells across town from the lab to the hospital was a highly choreographed affair, with the timing of the transfer scheduled down to the minute. Since this was the first time this was being done, there was a lot of anticipation on everyone’s part, and my cells arrived with an entourage! Soon there were eight people in my room, all members of the research team there to watch the infusion happen. While the nurses prepped me, we waited for the exact moment when the infusion was scheduled to happen. In my nervousness, I looked at everyone and said, “I still have the right to withdraw, right?” Let’s just say that my audience didn’t find that very funny. After the infusion, my vital signs were monitored every 30 minutes and overnight every hour, looking out for any potential side effects. But other than a metallic taste in my mouth thanks to the saline drip, nothing happened. “Is that it?” And I went home.
Guess what? MORE blood draws after the infusion. They started right away, multiple times a week for the first month, then (mercifully) every few months for the next two years. And in all this time, I didn’t really know how it was going, at least not officially. What I did know is that my “honeymoon” phase seemed to be continuing. My insulin needs were still quite low because my body seemed to be producing a fair amount of its own insulin. During this time I was also learning more and more about how to control my diabetes, and as part of the study I had ongoing access to diabetes educators who reviewed my paper and electronic logs (I started wearing an insulin pump and using a continuous glucose monitor) every two weeks. That might sound a bit much, but actually it was like having my own personal diabetes coach and it ended up really helping me manage my diabetes as well as possible.
Friends and family have often asked me what it was like to participate in a trial. I usually keep it short and say something like, “Oh, it was interesting.” Actually, it’s more than just interesting. It feels like a good thing to do. It feels empowering, and it also feels necessary. Science simply can’t advance without participants. Through this process I’ve become very appreciative all of the people behind the science – others with T1D who have stepped up and participated in research before me and the researchers themselves who have the vision, patience and tenacity to develop an idea and see it all the way through to fruition. So the next time you are reading the latest issue of Diatribe summarizing findings from the latest studies, take a minute to think of all of the people behind the data. They are average, everyday people – real people – helping to make day-to-day life with diabetes easier and bringing us one step closer to finding a cure.

Mary

And then they grow up

Its September and that means back to school for many.  For my youngest son it means heading back to a classroom for his last year of high school.  How did that happen? We were only just preparing to send him to preschool yesterday and today we are discussing at what career he wants to explore.

This isn’t the first time this has happened to me. It was just as traumatic when my oldest son was graduating. He is now in the workforce and renovating his first home. I am way too young for any of this but somehow it keeps happening.

Despite my desire to keep them both babies, they have grown into young men but the challenges facing them are very different.  There is a big reason for that and it is called diabetes.  It seems to rear its head into every aspect and ways that I had not thought of.  My 17-year-old son in less than one year will no longer be eligible for his father’s private health insurance unless he pursues post secondary education.  If he doesn’t he will no longer be eligible to have his test strips and insulin covered.  Yes, we do have a provincial drug plan that he can apply to to help reduce his costs but he has to know to apply.

Thankfully he is planning to attend a post-secondary institution so he will continue with some coverage for a bit longer but will his chosen career have a decent medical plan? I am not sure. I think so.  His current career path will lead him into a union, the same one as his older brother, and I believe that he will have coverage at that point–I certainly hope so for his sake.

This is part of the reason for my desire to see changes to our current provincial insulin pump program.  For the past few months I have been working with people and have seen time and time again how expensive diabetes care really is.  It’s not like I didn’t already know this fact but hearing stories and sitting down to think about exactly how much money is spent each week, each month, each year can lead to jaw-dropping moments.

One person shared that they spend $8000 per year.  That sounds like a lot of money. I could enjoy a lovely vacation for that or buy my son a decent used vehicle.  In this case that $8000 is the cost after insurance so imagine what someone would be paying if they didn’t have insurance.  You are right, they are probably are not paying that much more.  Why? Because they have had to make ugly choices.  They most likely had to choose to go on injections rather than an insulin pump.  If they found the money for an insulin pump, they will  have learned how to stretch out infusion sets long after they should be changed.  They probably also know how to squeeze out every drop of insulin from a cartridge and perhaps they have even refilled a cartridge despite knowing the risks that such an action can bring.

For those who cannot afford the best medical tools, they are playing a game of  Russian Roulette on a daily basis.  My son and I have worked very hard for the past fourteen years to keep him healthy and he uses the best technology that we can afford.  That is the sad part however, that people with diabetes must only use the tools that they can afford, not the best tools that will keep them the healthiest and happiest for the longest–only what they can afford.

That is terrifying both as a mother and as a human being.  Imagine that your life depends on a clear liquid in a tiny bottle but you are not sure that you have enough to last you the month.  What are your choices? Perhaps you can beg your pharmacist and see if they have a compassionate program but you are proud person who works hard every day.  You don’t feel that you should have to rely on charity.  You could avoid eating for a few days.  That would limit the amount of “extra” insulin you need.  Perhaps if you didn’t test as often you could save that money to use for insulin.  That strange feeling you are experiencing might not be a low, perhaps its just stress over your supplies running low.  Maybe you really don’t need to test. Maybe you will be okay….or maybe you won’t.

The reality is beyond scary.  This is why I do what I do.  This is why I advocate for improved access to insulin pumps, devices and supplies.  Unless you live in this world, it can be very difficult to completely grasp and understand. I don’t want more people to live in this world so that they understand.  I would rather that they live in ignorance but my son and too many others should not have to know these feelings.  It is important that we take care of those in our society living with chronic conditions.  It is equally important to aid them to purchase the tools that keep them alive and healthy and allow them to therefore fully contribute to society through work and play.

first day of school 2003