Six Tricks to Enjoy Halloween with diabetes.

trick or treating with diabetes
from Charles Schultz

It is that time of year again, time to get ready for the Great Pumpkin and all of the fun…and anxiety that Halloween can bring many parents. For those families dealing with diabetes for the first time, the stress of trick or treating with diabetes can be greater than dealing with the challenges of Christmas.

Children are invited to Halloween parties.  There are Halloween events at school and there is the inevitable night of trick or treating.  What do you do with all of that sugar?? Well here are a few things that have helped some parents get through.

Eat while they walk

Its okay to let your child eat candy while he/she is out trick or treating. In fact, go ahead and encourage it (as long as usual Halloween safety rules are applied of course–Mom/Dad checks candy or it is from the home of a good family friend).  All of the walking, running and general excitement will most likely lead to some serious low blood sugars.  You can help to avoid this by letting your child eat the bars, rockets (Smarties for my US friends) and other treats. Your child will feel “normal” and it will be a fun way to keep blood glucose levels in range.

Halloween treats are great from treating lows when you have diabetes

Halloween is the perfect time to stock up on low supplies. It offers fabulous 15-gram packs of sugar just perfect to carry in your bag and treat lows. In fact, even if your child doesn’t take part in Halloween events, you may want to head to the grocery store during this time to grab a few bags of low treats and save a few dollars! They tend to be a lot cheaper than buying glucose tablets from the grocery store.

halloween treats at mealsMake Halloween treats part of a meal

If you like to stick to a set meal plan, you can still add in some of your child’s Halloween treats. A bag of chips is equivalent to a bread exchange. A snack-sized chocolate bar is the equivalent of a fruit exchange.  For a treat, allow your child to have one of their Halloween items as part of a meal or snack.

Buy the candy back

Some families offer their children cash for their candy.  The children can then take the money that they earned collecting candy to purchase a book, game or favourite toy.  Mom and Dad can take the candy to work or save it to enjoy during some downtime when the kids are in bed!

The Great Pumpkin

Have the Great Pumpkin or Halloween witch come to visit.  Much like buying the candy, parents will exchange the candy while the child sleeps.  In place of their loot, the child will receive a movie pass, book or other treats that don’t involve food.

Donate it

Yet another way for our children to learn care and compassion is to take their candy to a local hospital or hostel. Have them share their candy with children who are unable to go out for Halloween.

Halloween is often a fun time for children. Remember that children with diabetes are children first.  Use some of the tips above to ensure that your child has a fun and memorable Halloween or let us know what works for you in the comments!

How to reduce diabetes waste

Whenever we have changed a site or try out a sensor, I have looked down at the pile of trash and feel incredible guilt. There seems to be so much “stuff” that we are putting in the garbage can. It can’t possibly be good for the environment. In an attempt to protect the world for my future grandchildren, I searched for some way to reduce our waste.  Here is what I found.

Buy in bulk

If you are purchasing those travel sized packages of glucose tablets, you may want to consider buying the larger bottles.  You can also go to your local Bulk Barn or Walmart and purchase low blood sugar treats in bulk.  If you do this right after Halloween, you can usually score even more treats at a way lower price!

Once you get your glucose tablets or other low treats home, you can then break them down into properly portioned, travel sizes in reusable containers. Those old glucose tablet bottles can be great for this.

Recycle the cardboard

Test strips come in boxes. Insulin comes in boxes. Infusion sets come in boxes. You get the idea. There are a lot of boxes when you live with diabetes. The great news is that most boxes and paper inserts are recyclable. Simply break them down and place them in your cardboard recycling container.

Drop off electronic diabetes devices for recycling

Did you know that often your old glucometer and DexCom can be returned to a recycling depot? I didn’t! You no longer have to have a dead meter collection in your drawer because you worried about throwing them in the trash.  Most will be accepted by your local e-waste or e-cycling drop-off center.  If you aren’t sure of a location in your area, you can also go to Earth911.com for the nearest recycling location.

Reuse tubing and other “waste” materials

If you are using an insulin pump, you already have come up with some great ways to reuse your tubing.  Young children love it when you snip the ends off of infusion set tubing and then let them string beads. They can spend hours making cute bracelets and more!

If you don’t have littles around, don’t worry, for those of you who like to garden, tubing is perfect for holding up plants!

Test strip bottle and insulin vials have many uses in creative art projects. Test strip bottles can also be perfect storage containers for thumb-tacks and other small items. Think about all of those things that you used to store in film containers and now you can put them in test strip bottles!

Recycle

After a bit of investigating, I did find that some diabetes supplies can be put in your household recycling bins.

Syringe caps can be recycled in areas that recycle bottle caps. The tops of the built-in inserters on inset®, insetII®s, mio®, Mio30®, Autosoft90® and Autosoft30® can also be recycled. Please ensure proper disposal of the insertion needles, however. If you use an OmniPod, you can take part in the Eco-pod program. It allows you to return pods to Diabetes Express for recycling.

If you are like me, you may still feel like there is a lot of waste in diabetes care but I was surprised to read a study that showed that there may not be as much as we think. A person consuming one soft drink or one beer in a can only every three days has a similar impact on the environment as eleven insulin pump patients using one infusion set each in the same time period. Let me repeat that….one beverage can every three days creates the same amount of waste as eleven pumpers who use one infusion set each!

A person using a tubed insulin pump in fact only produces the same amount of environmental waste as a person who purchases one cup of coffee per day. Mind-blowing.

As great as that makes me feel, by using the tips above, we can further reduce the environmental impact of diabetes waste.

What else do you do to reduce your diabetes waste?

It’s okay to cry…or scream..or just take time for you

diabetes is hard

Diabetes is hard.  Whether you live with the disease or you are the parent of a child with diabetes, diabetes is hard! I know, I said it twice because it is true. It can be exhausting and overwhelming. There is never truly a time when you can relax and say “whatever will be will be.”

There are times when you want to relax. You want to throw in the towel.  There are times when you want to simply say “ENOUGH!!!” and hide under the covers for a the day.  I am here to tell you to do it! Seriously, take a minute or an hour or a day and just throw in the towel so that you can pick it up again with more strength than you had before.

It’s in your best interest and the interest of those you love to take time for you.  Take time to just let it all go.  Here are five easy ways to reset yourself so you can continue on your journey with diabetes.

1. Hideout in the shower

cry

The shower is an amazing place.  You can lock the door.  The water pouring over your body can be calming and soothing.  It washes away your tears gently and without judgement.  The sound of the running water also drowns out your anguish.

When things seem bad…When you are tired and just want a break… take 5 minutes and hang out in the shower.  Cry or vent.  No one needs to know. No one needs to see.  You can simply let out all of that pent up anxiety  and allow it to flow down the drain.

After you are finished crying and yelling, you can dry off and get on with your day!

2. Go for a walk

walk

Ideally, go for a walk by yourself but if you can’t take the kids and just go!  Power walk at first until you have spent all of that stress and tension out of your body.  Let all of your frustrations be released in your strides. Slowly let everything go until you can slow down and enjoy the scenery.  Breathe and just let it be.

Your heart will thank-you and so will your psyche.

3. Pass the buck

Alternate site testing

Whether you have diabetes or you are the caregiver, let someone else deal with things for an hour or a day.  Let them do the blood checking and the injecting. Give the meter or CGM receiver to a trusted companion or family member for a bit.  Allow them to deal with things in their own way.  Allow yourself to forget just for a bit.

It can be hard at first.  Diabetes is so all consuming but it can happen.  Don’t be concerned if the other person is  doing things differently than you would.  Let go.  As long as no one’s life is in danger…let it go.

I have done this for my son before.  There would be a day when I would do all of the testing, bolusing and carb counting. He would simply hand me a finger or his pump.  Diabetes was not something that he was going to actively concern himself with managing for that time period. He loved the break.

4. Enjoy a date night

have fun

If you are a parent of a child with diabetes, this is super important.  Make time for you and your partner.  If you are single, then make time for you and your close friends.  Take time once a week or at least once a month, to focus on relationships.  Leave diabetes in the hands of someone you can trust.  Do not spend all of your time looking at your phone or texting home.  Focus on enjoying yourself and recharging your batteries.

5. Meet up with other D-peeps

This one may seem a bit strange.  If you are overwhelmed by diabetes, why or why would I suggest that you hang out with other people who are just as stressed as you? Because they get it!

Seriously, meeting another person who lives with diabetes can be so liberating.  They truly do understand carb counting and pump problems.  They  are the ones who understand the A1c report card and so many other aspects of your life.

Go to conferences, events, or socials.  Talk to that co-worker who also has diabetes or that Facebook friend you met in a group.  Share with each other.  You won’t just talk about diabetes but they will understand that diabetes factors into so many other aspects of your life.

These are just a few things that can help to relieve some of the stress of living with diabetes.  There are many other things that you can do.  If you reach the point of feeling completely overwhelmed, please consider talking to your doctor or a therapist.  Diabetes is hard.  You need supports.  Make sure you find them and use them for the sake of you and all of those who care about you.

Animas, We are Heartbroken

Animas is closing

Johnson and Johnson announced on September 5th of 2017  that they were closing the doors on their insulin pump division in Canada and the US.  Animas Insulin Pumps would be no more. Animas insulin pumpers in North America were heartbroken.

While some saw it coming in the corporate rumour mill, others were blindsided.

Animas had done something that many companies in many industries are striving to do…they had  created a feeling that you were family.  Whether you were an Animas insulin pumper or you used another brand, you had probably attended an Animas event and were treated royally.

The employees with Animas all seemed to genuinely care about you.  They checked in on you and took the time to know your family.  I had the pleasure to work closely with many members of the Animas family over the years.  They will be huge assets for the next company that employs them. I am sure that many of them are just as saddened as we are.

This is not the first time that an insulin pump company has closed its doors.  We have been here before…twice.

Cozmo (personally a pump like no other) closed its doors in 2009.  We still have two in my son’s closet.  I have friends who still wear this as their pump of choice.  It is doable even 8 years later.

Most recently, Asante, a pump revered by many who tried it,  was also forced to step away from the insulin pump market.  Their users were devastated.  They were heartbroken and felt lost–just like Animas insulin pumpers are feeling today.

What do I do next?

Take things one step at a time.  The great thing about insulin pumps is that, while some have quirks, many are pretty sturdy and last.  If you have more than one pump in your house–usually because one was out of warranty and you purchased a new one right away “just in case”, relax.  If for some reason, your current pump stops functioning, go back on your old one while you decide which pump to try next! Just make sure to write down those settings and keep them in a safe place.

How long do I have before I can’t get supplies?

You don’t have  to stockpile supplies   You don’t have to run out and buy a new insulin pump tomorrow.  The Animas press release stated that warranties will continue to be honoured until September 2019. Cartridges will be be available until that date as well.

Statements from both Animas and Medtronic note that supplies will still be able to be ordered in the same way as before. Nothing changes, except when your Animas pump stops working, you will not be able to purchase a new one.

Thank you…

So while we take a breath and rethink our next steps…our next pump…our next option, I want to take a moment and say thank you.  Thank you to the men and women who worked so hard to make Animas a different company.  I truly appreciated getting to know so many of you.  You brought us a new experience in caring.  I hope that we meet again soon, with a new company perhaps bringing new options in diabetes care.

Options are the most important thing.  Make sure to always know your options and always choose the option that works best for you and your lifestyle.

I don’t have diabetes but diabetes can still bring me down.

tired thanks to diabetes Diabetes Advocacy

Diabetes is exhausting.  The emotional toll of check, calculate, bolus and more is incredible.

I am lucky.  I don’t have diabetes, but diabetes can still bring me down.  Because I don’t have diabetes, when it does tend to be too much I can step away. I can put it on the back burner and regroup before I dive in again. I wish everyone with diabetes had it that easy.

For years I was my son’s external pancreas.  It was exhausting.  I never slept more than four hours at a time.  If I woke up during the night, I checked his blood glucose levels.  We had no Continuous Glucose Monitor.  We just had me. It was my job to make sure that he was in range.  I was the one to calculate carbs, adjust insulin ratios and log blood glucose readings.

My son tested and learned alongside of me but I carried the bulk of the burden…until he turned 16.  At 16, he decided that he could handle it all.  He carried the entire burden for the next three years unless he was visiting me.  When he was with me, I took over as much as he wanted.

Taking over wasn’t the same as doing it 24/7.  That being said, being an external pancreas also wasn’t the same as being the one to experience the highs, lows and pokes with needles multiple times per day.  Not being able to “fix it” or take it away could (can) bring me down as much as the pressure of daily diabetes care.

I  still wish that I could take the pain away. I wish that my son would know a different life.  There isn’t a day that I don’t ache for the families and other people living with diabetes knowing that they can never stop testing or injecting.  Their very lives depended on it.

Knowing that fact can also cause sadness. I ache for families that struggle to keep their children safe in school. I get frustrated for those individuals who are fighting to receive insulin at a fair and decent price. My heart breaks for those who are having a hard time paying for their supplies and who can’t afford the best in diabetes care.

I don’t have diabetes.  Diabetes can bring me down but I won’t let it keep me down.  Each day I wake ready to work a little harder.  Each day I will share what has worked for us and hope to inspire and assist others living with diabetes.  I will continue to work with individuals and groups to create better care for people with diabetes regardless of education or income level.  Diabetes can bring me down but it will not win. My battle won’t end until a cure is found. Don’t give up either. We are here for you!

Talk to more people living with diabetes and advocating for a better life in our online Facebook community.

What Parents of Children with Diabetes Wish You knew…

parents of children with diabetes

Have you read the blog post “What Everyone with Diabetes wishes you knew“? Go and read it if you haven’t. Bring tissues.  After I wiped away the tears, I began to think about “what parents of children with diabetes wish you knew.”  Some of us don’t have diabetes ourselves but we still have very strong feelings about the issue.  As parents of people with diabetes, we have things that we wish our children knew.  There are also things that we wish that the general public knew.

Parents of children with diabetes wish that the our children with diabetes knew that….

time together

We would take this disease from them in a heartbeat…a heartbeat.

With every tear that they shed,  we have privately cried  a hundred more… We didn’t want you to see how much it hurts us to hurt you.  We told you that we do this to keep you healthy and alive (and we do) but it kills us too.

No matter how old you are, we still want to “make it better”. Seriously.  Still.

We know that you can handle it.  We just wish that you didn’t have to…As parents of children with diabetes, when we were completely responsible for your care, we got tired and wanted a break. We understand that you, as the person with diabetes must feel the same way at times. We wish we could carry the burden for you.

Even when we don’t ask you how your readings are, we are still wondering if they are okay…

We know that you are more than a number.  As parents of children with diabetes, we understand that blood glucose levels are only part of the story but we want you to be okay.  We want to know that the readings are okay as well.

We have watched you sleep and cried at all of the holes that we have put into your body just to keep you alive.

Every night that we sat awake waiting for your blood glucose to rise or fall, we did from love and a need to keep you safe.

When we nag at your for not testing, injecting or rotating sites it’s because we want you to have a long and healthy life.  

It’s not that we love the sound of our own voices. It’s not that we think you don’t have a clue. As parents, we know that life happens and people forget. We just want to help.

If you need us to, we will still help you with any care or night testing. 

Ask.  We might be out of practice but we are quick studies. We will help you anyway and any time that we can. It’s just what parents do.

Even if you aren’t my child and you live with diabetes, I wish I could take it from you.  

Honestly,  I wish I could help you carry that burden for a week and let you breathe.  I have told you this before and I mean it. I don’t care how old you are.  You are someone’s child with diabetes.  You carry the same burden as my own child.  It still kills me.

I wish you didn’t have to carry so much “gear” with you when you go out.  

I wish you knew the luxury of just grabbing your wallet and keys and heading out the door without concern for insulin, pump, glucometer and glucose tablets.

We wish for a cure too.

Until it arrives, we will work with you to have the best care, the best knowledge and the best tools that we can afford.

As parents of people with diabetes, we wish that the general public really understood that…

insulin pump tattoo

Type 1  is not the same as type 2 diabetes.  

Each disease has its own challenges and issues.

We did not cause our children to develop diabetes.  

Seriously, we carry enough guilt about not protecting our children from an invisible disease.  Your added blame is not required.

It is okay for our children to have treats now and again, the same as your children do.

No child–or adult should live on junk food but a cupcake now and again will just brighten someone’s day…or raise a falling blood glucose level.

Insulin is not a cure.

It just keeps my son alive…and can kill him. It is a carefully managed tool that he must use at all times.

An insulin pump is not a cure either. 

An insulin pump is an expensive tool that not everyone can afford.  Even for those lucky enough to be able to use one, there is still much work to be done to be safe and healthy.

Diabetes is expensive.

 Let me repeat this….diabetes is EXPENSIVE. There are many great advances in diabetes care but they are only available to those with excellent insurance or deep pockets.  The cost of diabetes supplies can range from the equivalent of a car payment or mortgage payment each month. Again, that is just for a person with diabetes to stay alive.

I look tired because I don’t sleep at night.  

After years of worrying about my son’s blood glucose levels and testing him numerous times per night–well I still wake up. I still worry about what his readings are. I still don’t sleep properly

Worrying isn’t about being an overprotective helicopter parent or because I have nothing better to do with my time.

 I worry because diabetes is deadly.  Errors in insulin, errors in tools or simply changes in activity levels can have lethal consequences for people with diabetes.  This isn’t just talk. This is real.  I have lost friends to this disease.  Parents of children with diabetes have seen their children die because of diabetes. Diabetes kills. It is a scary disease.

As a parent of a child with diabetes, I hope both my child and the general public know that I will continue to work hard every day to improve the lives of people with diabetes. I will offer a helping hand, a strong shoulder or the voice of experience where necessary. I will continue to dream of a day when we can say that we are parents of children cured of diabetes.

Diabetes changes your vocabulary

It’s funny how your vocabulary changes when diabetes enters your world.  I saw nothing wrong with sternly telling my 5-year-old son who was having a tantrum in public.. “You had better be high mister!” In hindsight, you do have to wonder how many adults were wondering why I was okay with my child being stoned.

Before diabetes, if someone said that they were low, I would have assumed that they were having a bad day.  I would have offered them a shoulder to lean on…today I am running for glucose!

Twenty years ago, if you had told me to grab a site, I would have thought you meant a campsite and would be questioning why I, of all people, would seriously want a camping site? I prefer camping in a 4 star hotel to sleeping on the ground with bugs and other creatures.

Today when I ask my son to tell me his BS, I don’t want to hear the lies that he has to tell. Gone are the days when BS meant bulls*[email protected]  Now it reflects important blood glucose information.

A juice box is no longer just something to have on hand when the grandchildren pop over for a visit.  Those little guys are vital, life-saving bottles of sugar to be used when my son comes in from work and says “I’m low”.  He doesn’t want a hug, he just wants that juice!

A Pump is not just for breast milk
A Pump is not just for breast milk

I recently reached out to the diabetes community  and asked what words had new meaning for them when diabetes came into their lives.  The answers were pretty funny! Check these out…

  • A D-bag is no longer a douche bag but rather that super important kit that contains all things diabetes related.
  • Checking your numbers no longer refers to wondering if you have won the lottery.  When diabetes moves in, it is hoping that you win that diabetes lottery and your readings are perfect.
  • As a parent, this was one of the hardest ones for me  to handle…”If you are not hungry then leave your salad and make sure that you finish your dessert!”
  • The question, “How is your 6 year old’s reading?” now sends one parent to automatically check their child’s CGM rather than reply as to what sort of books they are currently able to read.
  • “Make sure you wash all of the blood off of your hands.” has nothing to do with clean up after  a serious accident, applying trauma care or cleaning up a murder scene.
  • A pump isn’t just for breast milk any more!
  • “What’s your number” is not a pick up line.
  • A “Sugar Daddy” does not refer to a man who is supporting a woman in a lavish lifestyle but rather the father of a child with diabetes.

I never realized how much my vocabulary has changed since diabetes came into our lives.  Quite a few of these made me laugh as I realized how odd they must sound to the outside world!

What sort sayings or words have completely changed their meaning for you since diabetes barged into your life?

Its too hard to count every calorie…or is it?

We are coming to that time of year when many of us will be making New Year resolutions.  I don’t do resolutions but I have decided on a few goals for 2016.  One of them is to get rid of that spare 15 pounds that plagued me all last year.

I have realized that there a variety of factors that have gone into my weight gain–change in activity levels as well as…cough…cough…age.  I therefore decided to look outside the box for you to have some new weight loss tips and to know how to lower your unhealthy cholesterol.

After almost 16 years of having diabetes in the house, I have a pretty good idea of nutrition.  While I no longer have a massive driveway to clear of snow each winter, I make sure that I use the treadmill we have on a regular basis with a decent intensity.  As I said, that has not been enough so I have purchased a few books to look for other theories and alternatives.

For some reason I chose Dr. Phil’s 20/20 diet book to read.  I won’t say if its good or bad because after almost 100 pages, I still have no real idea as to what his diet and exercise plan will entail.  What did strike me was repeated reference to what it won’t entail….

“juggle Tupperware containers all day with “mini-meals”  that you weighed and calculated, you might as well quit your day job,  because your diet becomes practically a full-time job!” (from The 20/20 Diet by Dr. Phil McGraw)

He talks about how unrealistic and unsustainable it is for a person to count calories every day at every single meal.  As I was reading along, I also saw that he mentions that he has insulin resistance and diabetes.  I then began to laugh a little.

While I agree fully that counting every single calorie and weighing every single morsel of food is a challenge, it’s not an option for a person living with Type 1 diabetes. Well it is but the alternative of not doing it is lethal.

I was reminded of this again after a recent visit with my son.  He sat on the couch with a bag of chocolate covered jube-jubes.  He was eating candy after candy, enjoying the super sweet taste and giving us a review of each morsel.  I was reminded how easy it is for the average person to simply mindlessly eat.  In my son’s case, he had to count every single candy that entered his mouth.  He then had to multiply it by the carbohydrates in each candy.  Finally he would input it in his pump to have the proper amount of insulin delivered to his body.

Dr. Phil was right in part, weighing, measuring and calculating can be a fulltime job.  However, if you live with Type 1 diabetes, carb countit’s a job that you do not have the option of quitting any time soon.

What if it were me?

For those who don’t live with diabetes and don’t know, November is Diabetes Awareness Month. It’s a month that people who have lived with diabetes, share and work to educate the public to the realities of diabetes.

As the mother of a person with diabetes, I know a lot about diabetes. I know how dangerous it is. I know how difficult it is to maintain healthy blood glucose levels. I know that it is a 24/7 job. I understand the technology. I understand the cost but I don’t live with it going on in my own body.  I can only empathize and guess.

The other night my mind began to wander as it normally does.   I started to imagine what it would be like to be the one living with Type 1 rather than just the support system.  It was terrifying and overwhelming.

I didn’t think about the lancing of my fingers. I jump at the sound of the lancet being shot out so the process would take a ridiculous amount of time for me.

I didn’t think about injecting myself with a needle or infusion set. I cringe at needles and look away when I am getting blood work done but do what I need to do when I must.

I didn’t worry about counting carbs for every single morsel that entered my mouth. Its something that I tend to do without thinking about it after years of totalling my son’s meals.

I did think about living life on a roller coaster however.

As a parent, I know how rare it is to have more than a few hours of blood glucose levels in range at any given time.  Yes, you can be in range for 4, 6 or even 12 hours at a time but depending on the regimen and your activity level that is a lot of work to maintain.  The rest of the time you are fighting highs or lows.

Dealing with numbers is one thing.  Dealing with the physical feeling of your body being high, being low, being “normal” must be incredibly difficult.

I thought about being low. I know how horrible I feel when I am overly hungry.  I know how I feel when I have somehow missed a meal and my stomach begins to growl, my head pounds and I feel more agitated than normal.  I also know that during those times my blood glucose level is usually only hovering between 4.2 and 3.9 (75-70). In other words, just barely low if low at all.  My son can be much lower and I don’t hear him complain.  What must he and others be going through?

I thought about being high. I don’t have a lot of reference there. I have had that occasional meal that you know is a major carb overload and I feel lazy and sluggish.  I am guessing a person with diabetes feels that way and worse.  When it gets really bad, my son is constantly in the washroom, guzzling water and fighting the need to throw up.

I appreciate that the extreme end of vomiting when high is not a norm, but I am sure that some of that stuff like the drowsiness or the thirst is relatively common as his numbers climb.  That has to be annoying.

Just in case it isn’t enough to have to monitor your food intake without respite, and just in case it isn’t torture enough to be jabbed and stabbed multiple times per day, factor in the physical response.  Factor in the response  of your body to your errors in providing the exact right amount of insulin for all situations.  Consider how you would feel if your blood glucose level suddenly plummeted as you were in the middle of something important.  Consider the feeling of a sudden spike because you are facing an anxious situation. This the rollercoaster that you ride every minute of every day when you live with diabetes.

No wonder people burn out.  No wonder our children want us to take it away.  No matter what we do as parents; no matter how empathetic we are, most of us don’t live with diabetes on a daily basis.  We can’t begin to truly fathom how it physically feels.  No wonder many would just as soon forget.  After two minutes of thinking about what life must really be like for my son, I couldn’t handle it.  No one should have to handle it.

I am grateful for the discovery of insulin that allows people with diabetes to live, but insulin is not a cure.  They need a cure. safe_image.php

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