Choice. YDMV

Choice.

Your Diabetes May Vary.

Everyone is different.

What works for me, may not work for you.

These phrases are very important in the world of diabetes and specifically in the world of Type 1 diabetes.

I have always been vehement about people’s right to choose. I believe that individuals have to do what is right for them.  What is right for you may be not right for me but does that mean that I should stop you from doing it, right?

I have been equally as dedicated to the right to choose since entering the world of diabetes. I believe that people should be able to go on an insulin pump at diagnosis and not wait for a specific period of time…if they so choose.

I believe that everyone should have access to a Continuous Glucose Monitor. Access should not be restricted by income level or insurance plan…if they wish to use one.

Most importantly I believe in the right to education.  Education allows people to make informed choices.  Just because an insulin pump has been the best treatment option for my son, doesn’t make the best option for you.  Every person is different. Every body reacts differently. Each person should have the right and be educated to make the choices that fit their lifestyle regardless of budget.  That is my point.

I know of adults who have pumped and hated it. They did not want to be tethered to something. They felt that they had better control with injections.  That was their choice and they made it armed with information about themselves and the alternatives.  Everyone is different.

I have met parents who have seen great success using NPH on their children. I was able to learn how to use NPH and a rapid acting insulin in such a way that my son rarely did without at birthday parties or other food related events. We were educated.  We could make choices that worked for our families.  What worked for us does not always work for someone else.

If someone chooses to use an insulin pump, they have to choose the pump that works for them.  Some people don’t like tubing. Some people want a pump that is water-proof. Some people require larger reservoirs or a sensor augmented pump. It is vital that they be allowed to learn about their options and then make the choice that fits their lifestyle.

We all have seen how amazing Continuous Glucose Monitors are…but some people still don’t want them. My son is one of those not sold on the benefits of wearing yet another device. They have a right to make that choice but that choice should not be driven by money.  It should be made based on their own desires and knowledge of their diabetes care.

No one should have to choose insulin or bread, pump supplies or car payment, insulin pump or house down payment, a cab ride home after a night out or a sensor for their CGM.

No one should be forced to use an insulin regimen because they are ignorant of the options.

No one should be stuck in one treatment form or the other because it might take a bit more time to educate them.

Options should be given to everyone regardless of age or income.

People with diabetes should be shown all of the insulin options–do you want to go with limited injections? Do you want to use a basal/bolus regimen? Do you want to use an insulin pump? What features are important to you? Do you want to have a pump with tubing or without? A pump with CGM compatibility or without? Do you want to try a CGM? What works best for you and your lifestyle? What will give you the best quality of life?  Yes it can be overwhelming but knowledge is power.

One treatment option does not work for everyone. I have come across people who have created their own insulin cocktails to maintain great control on injections. I have known people who only used their pumps to cover meals and used an injection to deliver their background insulin.  I am hearing of people looking to add in the use of inhaled insulin for very specific needs.

Everyone is different but everyone deserves the right to make their own informed choices.  Those same people who make informed  choices then deserve our respect because what works for them may not necessarily work for everyone else.

Thank you DiabetesInsight.ie
Thank you DiabetesInsight.ie

15 Years later and its still happening

On my Facebook news feed, there has been a lot of mention of a child who was recently diagnosed with Type 1 diabetes.  Too many children are diagnosed each day but this story is getting greater attention because she was not diagnosed until she was in a coma and now appears to have brain damage.

I can’t give you the details of this particular story.  I haven’t followed it.  I see the photos.  My heart breaks for the family and the young girl but I can’t sit down and read about them.  I can’t follow their story.  It cuts me to the core because I know that there but for the grace of God go I.

It was almost 15 years ago when my then two-year-old son was behaving strangely. He was clingy and tired. He was constantly soaking his diapers but he also was constantly drinking when he was awake.  We couldn’t keep him away from fluids. If we restricted what he drank to try to save his diapers, he marched his little body to the fridge and would guzzle apple juice from the carton.

We had taken him to the emergency room.  He had the flu we were told.  We waited for him to get better but he didn’t.  We made an appointment with our family doctor and our world came crashing down in waves.  Our doctor thought he had diabetes. He had ketoacidosis.  He needed x-rays.  He had to go to another hospital.  This was very serious.

I understood x-rays, hospital and serious.  My son was laboring to breathe in my arms and his body was cold.  It was serious but it couldn’t be that serious could it? He had been healthy all of his short life.

A trip to another hospital led to another wave of terror.  Now we were told new things. We heard diabetes again. We heard brain damage, heart attack, stroke, kidney damage, and “if he makes it through the next 24 hours.”

That was almost 15 years ago.  Someone missed checking his urine or blood during the first visit to the emergency room.  It almost cost my son his life.

Today we have insulin pumps. rapid insulin, continuous glucose monitors, and sensor augmented pumps.  We have meters that read bg levels in under five seconds but still we have children literally dying because a diagnosis of diabetes was missed.  A routine test of urine for sugar or ketones is not done when they are checking for everything else.  Doctors assume that its flu season and the child must just have a bug.

Its not their fault.  We feel that it is when its our child but they have to know so much and what ails the human body can be such guess work.  They could help themselves and our children however if they remember to add that one little screen to routine blood or urine work-ups.  A stick in urine will still show the presence of ketones.  Asking any parent of a child with diabetes how long it takes.  Its a matter of seconds and the urine sticks are cheap. ketostix_intensity

In 15 years a lot has changed.  Our meters no longer take 30-60 seconds to produce a reading.  There are other background insulin options besides NPH.  Insulin pumps are now so smart that they can talk to continuous glucose monitors.  Continuous Glucose monitors are no longer items that are blinded and reserved for only select hospitals.

Type 1 diabetes is finding itself in the mainstream media.  Insulin pumps are being shown and discussed in various television shows.

Despite all of these strides ahead, children are still dying.  People do not know what to look for.  As a parent, I didn’t know what diabetes looked like or even that I should be looking until the signs were literally posted right in front of me.

Healthy children get sick but they don’t need to die.  We need to work harder to get the word out there.  Families should not suffer this pain. No one should die or suffer the damage of undiagnosed type 1 diabetes in 2015.

 

Make this month’s Hallmark Holiday Truly mean something!

Maybe it’s because I am getting older.

Maybe it’s because every month there seems to be some occasion that is asking for access to my wallet.

I am sure it is a combination of the two.  We literally have only just finished putting away everything from Christmas so another occasion is just too much for me to handle so soon.  I cannot get excited about more chocolates (I still have to lose the weight I gained from all of last year’s chocolate) or an overpriced card that says the things we should be sharing on a regular basis.  I can get excited about saving the life of a person with diabetes however.

For the third year in a row, the Diabetes Online Community has come together to help the IDF’s Life for a Child Program.  The idea is that a dozen roses cost $60.  $60 would cover one year’s worth of insulin under the IDF’s program.  Since no one wants to see anyone end up in the dog house for not giving your loved one the required flowers for Valentine’s day, the idea of “spare spare a rosea rose” was born.

Give your loved one 11 roses.  Spend $55 and then give that extra $5 to the IDF.  That $5 donation will last a lot longer than the rose.  With a lot of TLC, I am guessing you will only get a week out of the roses and a day or two of goodwill.  If you spare a rose you will get the week of seeing those 11 roses blossom, but a child will get one month’s worth of insulin and your sweetheart will know how much you care about others and which might be worth an extra week of goodwill from him/her!

This year its easier than ever to get involved.  I just made my donation as I was finding all of the links for this post! You click on the donation page, choose the currency you would like your donation in (you have a choice!!), decide if you want to make a one time or monthly donation, decide how many roses you are willing to forfeit for a great cause (one? two? the entire dozen?), and finally choose how you want to pay.  You can pay from your PayPal account, a credit card, or a bank account.  It really is that simple to save a life! You can even share this idea with your office and create an office campaign.

If you are like me and not a big fan of February’s Hallmark Holiday, I encourage you to turn it into something meaningful and become a part of the Spare a Rose, Save a Child campaign.  Tell your loved one how important they are to you and then show them how much you care about others by donating a rose (or twelve) to save a life!

To learn more about the Spare a Rose, Save a Child campaign, please check out these frequently asked questions.

I am the Robert Munsch Momma. What type are you?

I was recently approached by the Outreach Coordinator of Oscar Health Insurance and asked if I would do a post on what it was like being a mother of a child with diabetes. She asked that I look at a title along the lines of “I am a mother.  What type are you?”  I thought that there could be a lot of posts with that title so I decided to make my title a bit more specific to my situation.

When my children were small I loved reading Robert Munch books to them.  One book that resonated with me was “Love you Forever“.  A lot of people find the book creepy. Sadly, to me it makes a lot of sense.

My youngest son was diagnosed with type 1 diabetes when he was only 2 years old.  He is now 17.  I have spent a lot of nights crawling quietly into his room to test him, feed him, or give him insulin–all while he remained sleeping.  I have spent a lot of those nights watching over both of my children thankful that they were alive and praying that they remained safe.

The days, just like for the mother in the book were different.  When my son was small, getting him to eat was a challenge. Like his mother, he was not big on breakfast.  Unlike his mother, he had injected insulin in his system that demanded food to cover it. Our life was hell.  I would have to force feed a willful toddler who had no idea why this was happening to him,  Despite the tears and frustration of the long days,  each night I still would see his beautiful sleeping face and I would again be grateful for that insulin that was keeping him alive.

Like Robert Munsch’s character, my son grew, and grew and grew until he too was a pre-teen who walked his own path.  No matter how long he had lived with diabetes, he forgot to test. He missed insulin doses.  He forgot to change his infusion sets…and he lied about it.

There is a lot of guilt when dealing with a child with diabetes. We, as parents, should have been able to protect them from such an evil disease. They should not have to bear this burden.  With the help of people like Joe Solowiejczyk, I learned that it was okay to punish for diabetes related lapses just as I would for failure to brush his teeth or do his homework.   I learned that  as this was the hand that we were dealt and it was up to us to make the very best of it.

My son continued to grow.  He grew and he grew until he was a teenager and once again, there were new challenges for both of us.  As he grew, he worked to push me (and diabetes) further away as he struggled for his own independence.  He no longer wanted to be bothered by a mother asking about readings.  He wanted to work-out and talk to his friends. He wanted to do it on his own…and I was terrified.

When my son turned 16, he took the biggest leap towards his own independence.  He chose to move to finish his last years of high school. Today, I no longer see my son daily. He lives about 1000km away from me.  We text and call. When he has a problem, I am always there at the end of the phone but he deals with his own doctors appointments and daily diabetes care. I still worry.

He comes to visit me during the holidays and instantly my “momma clock” returns and I am awake to test him during the night. He enjoys the break and I am once again the mother in “I’ll Love you forever”. I am creeping into this big, young man’s room, quietly lancing his finger and saying a prayer of gratitude when the readings are okay and I know he is safe.

In another year, he will be finished high school and plans to move back in with me to complete his post-secondary training.  It will be a different dynamic for both of us. He is no longer the little boy I once rocked to sleep. He is now a young man with a full life ahead of him but no matter what…well my boys will always still be my little boys and I will always be just like that momma in Mr. Munsch’s story….  I will love them forever. I will like them for always.  As long as I’m living my babies they will be.

LoveYouForever

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

Diabetes on THE HUNT

Have you ever sat down and watched the History tv show called “The Hunt“? Its about people hunting in the Alaskan wilderness.  I am not a hunter. I went on my very first hunting trip last weekend and spent my time torn between wanting to find an animal so that my partner would be happy and not have to do this again and terrified that we would actually have to kill something. Again, I am not a hunter. If I had to kill my own food I would be a vegetarian.  I love meat but I am not fussy about how I get it if you know what I mean.

The other night “The Hunt” was on and I didn’t pay a lot of attention until they said that one of the hunters had to be very careful because he was a diabetic.  My mind instantly went into momma bear mode….”Where is his meter? I hope he is using a pump.  Does he have any glucose on him? He has to be carrying glucose.  Has he suspended his pump? He is burning a heck of a lot of calories carrying that dead bear.  They say he has no food. This isn’t good.  His partner has to have some sort of back-up supplies right? Why hasn’t he tested yet?”  and so went my internal dialogue.

When the couple reached their base camp, which had ample food and water, I was over the moon!  He was safe! He had access to carbs. All was going to be well! I could relax again.

After the show I wondered, why didn’t they show him injecting or bolusing? Why was he never testing when he felt low? I assume that he did all of these things.  This couple were serious hunters and outdoors people. He knew what to do but the powers that be in TV land did not see fit to add it into the show.  I am sure that it was not as dramatic as the bear charging them or the tension of “hunter has diabetes and could die while lugging bear out of the woods”.

I can’t blame the couple for not having his diabetes care shown.  Its not their call.  Did the producers of The Hunt have a responsibility to show the hunter caring for his diabetes? Not really. It was a show about hunting not living with diabetes.  Diabetes was just something that this young man brought with him on his adventure.  it was not nearly as fun to bring along as his female partner but it was just as much a part of him.

While the show may have failed to educate John Q. Public on how a person with diabetes handles his daily care in the wild, it did show that people with diabetes can do some pretty amazing things.  I don’t see my son hiking through the wilderness and chasing down a bear, all while living out of only what he can carry on his back, but I am sure that there are other people who would love to do this.  This young man, probably without really realizing, just showed viewers with diabetes that anything is possible as long as you are prepared.

TheHunt

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

A Bucket of Gratitude

We all have seen how insanely popular the Ice Bucket Challenge has become.  Stories of how much money ALS has raised since this went viral versus how much money it had raised in previous years are astounding.  What is equally moving is the stories of families touched by ALS.  I dare you to watch any of them without a box of Kleenex.

Last week on the Diabetes Advocacy Facebook page, I shared with you Moira McCarthy’s thoughts on this phenomenon and whether diabetes should be doing something similar. Reading about how ALS had touched her family brought tears to my eyes and I was so glad that my son “only has diabetes”.

I have not watched many of the ice bucket videos.  I have seen a few that have auto-started on my Facebook feed but for the most part I simply have said “I hope that they are donating” and “Better them than me but it is for a good cause.”  There are a few from friends who state that they have a personal connections to ALS that I do make sure that I play.

Maybe that is why I played this next video.    It was from a Facebook Friend who had a child with diabetes who said that ALS had come to call. I was curious.  Would it be her father? Grandmother? I was sure that it would be sad but I had been following the many blessings in their lives. They had recently moved across the country into a dream house. They had enjoyed an amazing summer spent traveling throughout this great country of ours.  Life was very good for them, wasn’t it? After listening to her tell her family’s story, well let’s just say that I was again left very grateful that all my son had to deal with was diabetes.

I know that diabetes kills. I know that diabetes is serious.  I know that things can change in the blink of an eye.  In the past month we have seen depression kill Robin Williams.  We have seen countless stories of how ALS has impacted and destroyed lives.  I have seen a family devastated when a father tried to save his drowning daughter only to be killed instead. Life and death happen. We deal with the cards that we are dealt but some of us have greater challenges to face than others.

In a blink of an eye it could be worse–so much worse. Diabetes can be cruel but life with diabetes is getting better. Highs are still brutal in their destruction of the body.  Lows are still deadly especially when they happen at night or when a person with diabetes is alone. There is hope however. Technology has created major changes.

We have the bionic and artificial pancreas projects.  We have CGMs, rapid insulin, and smart pumps.  We have apps to count carbs and apps to get us out of trouble.  We have a wonderful community of people living with diabetes who get it and support us every day.  Diabetes sucks but after seeing what others live with…well I will take diabetes with a bucket of gratitude.

gratitude bucket