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

Diabetes is exhausting.  The emotional toll of test, calculate, bolus 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,  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 tested his blood glucose levels.  We had no CGMs.  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.

As I  brush away those feelings, a new sadness often creeps in and diabetes can bring me down again.  The new sadness often comes from   my advocacy efforts.

Ever since my son’s diagnosis, I have worked very hard in various advocacy arenas.  I have worked with grassroots groups, individuals and large organizations to see changes for children and adults living with type 1 diabetes.  This means that I also am exposed to the worst in the diabetes world.  People come to me when they are struggling and don’t know where else to turn.

Don’t get me wrong, I love being that shoulder. I love being able to give back to them in the same way that others were there for me.  The problem for me arises when we can’t see a perfect resolution.  I ache when someone comes to me with a situation that I know there is just no current solution for. I want to fix it desperately but when I can’t?  Diabetes can bring me down.

At some points that sadness because I can’t fix it has been overwhelming.  Those are the times that I have had to step back a bit. I have had to reduce the time I spent on issues and allow myself to step back from the advocacy arena.  During these times, I remind myself that there are many others out there who can handle it just as well and I regroup.

I will admit, sometimes diabetes has brought me down so far that I wondered if I would come back.  Had my advocacy usefulness past? Was I too cynical? I can’t really answer that but I can say that I recharge and am pulled back into the ring by families and individuals who continue to reach out looking to me for help.

I don’t have diabetes.  Diabetes can still bring me down but it never keeps 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.

The Transition Year Troubles

Last week it was  rough being a mother of a young man with diabetes.  My son wasn’t in DKA or anything as horrible as that.  He was tripping up in the world of paperwork, bureaucracy and diabetes care.

Two years ago he decided that he was old enough to handle his diabetes care, appointments and schooling on his own. He chose to move to live with his father and take over the responsibility on all of those fronts.  I was forced to stand on the sidelines and offer advice now and again when asked.

I was also left to order supplies for his pump on a semi-regular basis and this is where the trouble began…

I had placed an order for his infusion sets and cartridges.  On Tuesday I received a message on my phone.  It stated that coverage for my son’s supplies had been refused.  I was to either pay the almost $800 bill immediately or return all supplies.

What the heck? My son was under 25 with no insurance.  The provincial pump program was supposed to cover him. Had he fallen through the cracks? Did someone forget to do his paperwork?

I immediately began making calls and sending out emails.  I was sent a copy of the forms that should have been completed for him.  I called the woman at the pump company back.   Slowly the truth began to emerge and it wasn’t pretty…

The pump company hadn’t received new paperwork for my son regarding provincial pump coverage since 2014.

His diabetes center had only seen him once per year but the provincial policy requires him to see someone three times per year.  He had missed most of his appointments.  They had warned him that doing so would result in lost coverage.  He never paid attention.

His diabetes center was for pediatric care and they believed that he had been transferred to an adult center.  They suggested that I contact his former doctor (whom my son felt was still handling his care).

I called his doctor.  I was desperate for some sort of help both in getting my son to realize how important his attendance at appointments were and finding coverage for his pump supplies.

His doctor would not take my call but did say that he was continuing to care for my son.  Because my son is 18, his doctor felt that it was up to him to fix the mess that he created.  Fair point.  I passed the message along.  My son made the call.

It is a new week.  A glass or two of wine helped me to decompress.  My son is hopefully beginning to understand that while Mom is always there to help, being “of age” means that he has to handle things.

He has a call into his doctor to set up an appointment and chat about what he can do next.  His doctor is willing to help him get things straightened out (him not Mom) . He has booked an appointment with a diabetes clinic closer to his home to ensure that he can make the appointment.

These sound like small things.  In our world they are massive but we will find out way through…and at least there is still wine.




How much do you figure I should bolus?

The other night I received this picture from my son.

My arteries :o

After my arteries recovered from the shock of seeing all of that fat, I turned to the question that my son had sent.

“How much do you figure I should bolus for the fish cakes?”

How high were you before you started?

“Oh, I have that covered.”

Did you pre-bolus the burger and fries and extend the bolus as well?

“Yep! Gotter dun. What are you thinking on the fish cakes?”

They are massive! That is a lot of potato in each cake.


We continue to discuss what we felt constituted a proper bolus for the fish cakes.  My thought was there looked to be about 1.5 cups of potato per cake so he would want to bolus a minimum of 90g CHO for the pair.  He agreed.

I can’t tell you if we guessed correctly or how he managed with the extended bolus for the rest of the “meal”.  Finishing year-end English assignments required to pass grade 12 were much more important.  Its kind of nice when we can put diabetes in the back seat to regular life for a change!

Another Diabetes Blessing

Last night I rolled over in bed, put my arm near my face and went…YUCK!

My son had dropped insulin on my arm! I was laying in bed when I realized that we had forgotten to reset his basals back to “school days” after 10 days of Easter vacation. 

He made his way into my room with pump and site change gear in hand. I told him that I just needed his pump but he said that his alarm had gone off earlier so he might as well do both. 

Holy cow! Was it a full moon yesterday? It must have been because his site change alarm went off AND he changed it the same day??? This was beyond belief! We did the site change, fixed the pump and he was on his way but unknown to me, he had left me that present…a large drop of insulin.

After my initial “YUCK!”  I had to laugh to myself.  Before diabetes moved into our lives, that smell was reserved for the opening of a BandAide brand bandaid.  You knew that the cut was safe and sanitized. Now it evokes new images of syringes, cartridges and life saving liquid. 

The smell is still rather disgusting when it arrives in the form of a puddle on your arm as you are trying to fall asleep but without it…well its definitely a blessing more than anything else.

Keep Bleeding!

I heard the crash. I heard the intake of breath.  Something was wrong. 

I called out to the kitchen, asking my son if he was still alive. He was.  He had decided to cut his hand instead of a bun.  

I went into check on the level of damage. 

“Who knew that we had sharp knives!?” he exclaimed. 

The blood was flowing and I reminded him not to get it on the food. It would spoil the aesthetics if nothing else. At that point blood splattered on the top of the loaf.  I quickly told him “Don’t clean up your finger yet. Keep it bleeding! I will be right back. When was the last time you tested yourself?” 

He told me it had been a bit.  I rushed into my youngest son’s room and grabbed a meter. I brought it into the kitchen and applied the test strip to the decent sized pool of blood sitting on top of his finger. 

He was 5.6(100).  Life was good. Diabetes had not moved into his world.  I did a small happy dance and suggested that he might want to clean up the blood that was dripping off of his hand.  We went to the washroom, added the Scooby Doo Band aid and were good to go.  

To the casual observer, I am sure that experience would have seemed bizarre. For us, it was the norm.  We do not waste blood.  My oldest son knows this and knows that cleaning a cut only happens AFTER the blood has been tested. 

Okay it is a little warped but its what happens when diabetes has lived in your house for over 12 years! 

What didn’t kill him made me stronger

A little over a month ago I came across an essay contest sponsored by a wonderful organization, The Diabetes Hope Foundation.  They are an amazing group based in Ontario started by a mother of three young men–two of whom has type 1 diabetes.  Her children have grown to be amazing men and her courage and dedication has never ceased to amaze me. 

I looked over the contest for a bit and asked my mom what she thought. Had diabetes really made “me” stronger?  I knew that if she could have reached through the phone she would have given me a large slap upside of the head so I figured it wouldn’t hurt to enter the contest.  At stake was an IPod Touch and an IBGStar meter (I thought it was an iPad and was quite excited but I would not turn down an IPod either–actually my son won`t turn down the IPod!).  I sat down and attempted to write my story in a brief, 500 word essay. That was the biggest challenge of all! Finally, I pressed submit and asked my friends to vote on what I had written. I was 100 votes behind to start but my story was listed. I had a month to wait and see what would happen. 

Yesterday at the DHF’s annual diabetes walk, the winner was announced. I am proud to share the winning essay with you…mine!

Diabetes barged into my life on a stormy day in March of 2000. Life was simple and each day was taken for granted until I heard the words…”If he lives past the next twelve hours we will teach you how to handle a child with diabetes.“ From that moment forward, I learned a lot about myself and my personal strength. I was terrified of taking my son home from the hospital. Could I handle making a toddler eat at specific times? Could I make him bleed numerous times per day? Could I stab him with a needle at least four times each day without him understanding why? Yes. I had no choice. I would force him to eat. I would mark his tiny body. The alternative had been shown to me in the ICU and it was not an option. I cried in frustration, alone in the dark. People told me I was stronger than I knew. I could do this. They were right. I did it and continue to do it. Diabetes is a constant struggle. No two days are the same. I constantly learn something new. I realized that not everyone was as strong as me. Not everyone to handle the challenges presented by diabetes and the rest of the world. I worked to change that. I gave comfort and educated people as often as I could. I changed laws. I shared information and offered support. Diabetes had stormed into my life but it gave me the strength to create real change. It made me realize that one person really can make a difference. It made me push my fears aside and turn emotion into powerful energy that propels me forward to keep fighting and to keep working to change the world for all people living with diabetes.

Thank you again to all of the amazing friends and family who supported me!! You are my rock and my strength. 

Isn’t diabetes enough?

We see the eye doctor on a regular basis. Well we did until we moved. We had a fabulous, exceptionally thorough optometrist previously. Each year my son and I went to see her. I went because I am blind as a bat and too chicken to see about laser treatment and my son went in order to keep on top of possible diabetes complications. 

I knew eventually we would need to find a new eye person and we did.  My son’s diabetes clinic set us up with a pediatric opthamologist.  Today was the appointment.  I expected it to be short. The sign said to expect 1-2 hour appointment length or more if you were a new patient.  Holy crap! We were going to have to camp out and I didn’t have a book to read! 

Our appointment was at 8:30am.  The doctor was late.  We finally got into the office and the exam began. My son did poorly. He had trouble with the largest of print.  Things were not looking good. Part way through he pulled out his glucometer.  Crap (again!).  Highs (or lows) would impair his vision.  He had been high the day before after breakfast.  How the heck were we going to know if he needed glasses or not? He was high.  How do you schedule an appointment for when your bg levels are perfect?? Diabetes ruins everything.

I had not really thought about diabetes messing with an eye exam before.  My kids did not inherit my poor eyesight and I never think of something else being wrong. In my mind, the opthamologist was about diabetes not eye sight. There had been close calls before–“we will watch this but he will probably need glasses later.”  but they had never amounted to anything.  Was today going to be different? 

My son had his eyes dilated, she re-examined him and decided that he would see for another day.  His eyes are not 20/20. They are a little bit worse but not enough to worry about.  She left it up to us to discuss and decide what to do.  I asked if getting glasses now would prevent further deterioration of his eyes.  She said no. 

As we got into the car at the end of the appointment, I asked my son what he thought. He said that there was NO way he was having glasses, contacts or anything else.  He could see. He could see the writing at school. They had said before that he may need glasses but his eyes were better at the next appointment. Today was no different. He would not need glasses. He had diabetes. One thing in life was plenty. 

Well, I asked didn’t I?  I agreed that we would wait and see how things went. If he felt he couldn’t see, he was having problems at school or next year she said things were worse–glasses it would be. He was right though–shouldn’t one health issue be enough for any person?      

Uncharted Territory

I was recently going through my son’s pump and stopped in shock.  I was struck by how much things have changed since he first began pumping. 

When my son first got a pump, we needed to have the ability to use very small basal rates. Despite having a 300 unit cartridge, we would only fill it to 200 units and still have to throw some out after one week. 

His carb to insulin ratios were of course much different and his basal rates were never close to 1 unit per hour.  

Over the years, I have gotten used to some of those changes. I learned that sweeping changes would no longer kill him. Puberty was turning his insulin to water and my brain was on overload. 

The one thing I never expected however was the importance of the midnight carb to insulin ratio.  My son didn’t eat that late.  On a really special night of roasted marshmallows he might eat at 10pm but we didn’t need to worry about anything after that.  The ratio set after midnight was just to satisfy the pump.  It had no real significance…until now.

Now that carb to insulin rate is just as important and used as often (or more) than breakfast! He often finds himself creeping the halls late at night searching to see what goodies are hidden in the fridge.  

It took me a bit to realize this. At first I thought, oh he needs his overnight basal rates tweaked. I began to look much more closely at my son’s eating habits. There were boluses at midnight and one in the morning! This time now mattered.  I had to make changes and pay close attention.  What had happened?

Oh yeah…I have a teen son! What was I thinking?

One Great Thing

What is the one thing that I do really well when it comes to diabetes? I think it has to be my ability to be a Continuous Glucose Monitoring Mom during the night. We do not have a CGM.  We do not have a My Sentry or a D.A.D.  We simply have a sleep deprived Mom and some serious guardian angels who like to kick her butt.

For years I would set an alarm clock for 3am.  I would then wake at 2am and find my son was running a little high. I would correct and sleep for another two hours. 

I would go out at night, come home and test my son only to have him sit up in bed in a zombie like state with a blood glucose reading that barely registered on his meter. Somehow I just knew to test before I did anything else.

I can go to sleep, be sound a sleep and something will wake me. I will need to use the washroom. I will have a dream of my phone ringing. I will be sound asleep, dying to stay right where I am and “something” will make me get myself out of bed.  I will stumble to my son’s room and be instantly alert when I realized that his blood glucose is low…and dropping.

I am sure that a CGM would say that I was fallable and it could do better, but I have heard that it makes mistakes too. So far, knock on wood, I have never slept through a low that caused a seizure.  My son has woken up every morning. He will ocassionally wake to his highs and has woken to one low in over 12 years.  Thankfully the Momma Monitor has only slept through the night a hand full of times. I may not get the readings right before bed. I may not bolus properly all of the time or gage the influence of activity exactly right but so far I have been able to protect my son at night, protect his body, and keep his A1c down to an acceptable range. I think that counts as “one great thing”.