Still Finding Feathers

My nest has been empty for over a month now and it still taking a bit to get used to.

My son has been quite good at making sure he uploads his pump for me to look at his readings. He appears to be testing more than once a day so I try to offer little criticism and simply make gentle suggestions where needed.

Moving diabetes to the back of my mind after all of these years is a challenge.  I still wake up a lot during the night. I still worry but that is what Moms do. I worry about both of my children. Diabetes just gives me one more thing to be concerned about.

I really don’t miss diabetes. I don’t miss having to get up in the middle of the night. I don’t miss wondering why he had a higher or lower reading than expected. I don’t miss time spent at diabetes clinics.  I don’t miss trying to figure out a new insulin pump.

I do however miss my son. Don’t get me wrong, I miss both of my boys but I have had a bit longer to get used to my oldest being away.  My youngest and I have spent a lot of time together over his lifetime.  His best friend is my best friend’s son.  We visited together. We went on trips together, we counted carbs together.  He is now enjoying life on his own–doing stuff without Mom always there. I am sure he is loving the freedom! It’s different for me.

I still miss walking into the kitchen and seeing him sat at the table surrounded by a fridge full of food.  I miss seeing his chin up bar dangling from a door way. I miss his dry, quick whit and timing. I miss the chicken fights that we would break into as we met in the hall. 

We text every day.  We talk at least once a week. I make sure that diabetes is the last thing that we discuss. It is rarely ever the very first. I ask about his day, his school work, his friends…then I ask about readings, meters and his pump. When he tells me “I screwed up.”  I try to remind him that his job as a pancreas is both unnatural and exceptionally difficult.  As long as he knows what he did wrong and he tries to fix it next time, its something to simply learn from and move forward.

I still find test strips in the most unusual of places.  There was one in my washer even though I have not done any of his laundry in ages.  We have a fridge full of insulin “just in case”.  There is a bottle of test strips that I found hidden in a box and part of an insulin cartridge that still sits in a place of honor in my car.

My new life of a Mom of children who no longer live at home is still very busy. My boys are always in my thoughts and their ability to stand on their own shows that I have taught them independence.  They will be home at Christmas.  I will savor every moment. I will fall back into the testing routine.

Life is changing.  Change is part of life but finding those little feathers (also known as diabetes waste) in hidden places of the house no longer make me grumble at their ability to “jump” out of the trash.  They now make me smile because they remind me of my son.

Go Ahead and Complain

The other week I noticed nothing but customer service complaints filling my Facebook news feed. I was shocked and wondered if there was something in the wind.  It didn’t matter if someone was in a restaurant or dealing with their cell phone, they were having issues with horrific customer service. Sadly, this made me feel better when I began to have my own issues.

My son’s glucometer was having issues. It was eating batteries with astonishing speed. It had reached a point where he was no longer using it much to my dismay.  This is the meter that “talks” to his pump and gives me a true idea of his bg levels each week when we review things.

I called the customer support number and so began my run around. It appears, in a review of my situation later, that every crack that I could fall through I did! It was terribly frustrating but it also reminded me of a few things.

First is how important our pharmaceutical reps can be when we have problems.  After asking around and finding out that the service I was receiving was extremely unusual, I contacted my rep to see if she could be of any assistance.  She was horrified!  She apologized and was instantly looking for any and all help that she could get for me.  She did not stop until things were resolved.  I loved this lady before she became my son’s pump rep and now I truly love how she goes above and beyond for her customers.

Secondly was how those annoying spiels about how they are recording your conversations actually have a benefit to the customer. If you know exactly when you called and you feel that you were not treated properly, management can pull up the call and see what has happened.  In my case, I was treated fine, my issue just got lost in many transitions.  I have however received horrible service from a person on the phone with a different glucometer years ago.  The woman told me that the problem with my meter’s accuracy was related to me having dirty towels that my son was drying his hands on.  To say I was insulted was an understatement.  Later follow-up resolved that issue and the woman was re-educated.

Customer service is huge for those of us who’s lives, or children’s lives, depend on medical equipment.  Personally, I have met many people in the industry from all over North America.  They all genuinely want to help.  “Stuff” does happen.  Mistakes can be made but I have also learned that these same companies want to learn from their mistakes.  Let your reps know if you have issues.  They want to fix things for you. They want you to be healthy and satisfied with their products. That’s good for everyone.

The Pumpin Patch

In honor of wordless Wednesday....

Diabetes is a Piece of Cake

Diabetes presents many challenges.  There is the obvious one of trying desperately to match food to insulin while factoring in nutritional content, exercise (both past and anticipated), emotions, health, and more.  There is also a challenge in trying to get the outside world to understand that our fears and concerns are real.

Fourteen years ago, I knew nothing about diabetes. I had no idea how serious it was.  Today, my biggest challenge is getting people to understand that this invisible disease that appears to be a piece of cake to manage only looks that way because of the hard work that is put in behind the scenes.

The average person who walked by my son on the street would never know that he has lived with diabetes for almost 14 years.  He has no complications. He doesn’t have a cane or any limbs amputated. He looks like an average 16 year old male.

They might notice his insulin pump or his remote meter when he tested. If they did they would probably be amazed by the technology and think that it made life pretty easy. If they watched him eat in a restaurant, they would seriously wonder what all of the fuss was about. With the exception of the diet drink that he would order, the rest of his meal would be more than two average people would eat at one sitting and he would somehow find room for dessert! How can life be that much of a challenge?

What they don’t see is how hard it can be to make that technology  work to its very best. They don’t see the time that my son and I spend reviewing  data, discussing what happened when he went low–had he been exercising in the past 24 hours? What was his reading in the test before? Did he count the carbs properly? Did he factor in fat and extend the insulin delivery over time or simply give it all in one shot?

They don’t see us discussing highs–was there a site failure? Did he run out of insulin? Did he make a mistake in how many carbs were in his food? Did he over-treat the low that he had earlier? Did he miss a low and his body rebound with a high? Is he growing? and the list of questions goes on and on but only we hear them.

They don’t see the effort and thought that goes into every setting on his pump.  The details that I examine before inputting the amount of insulin he gets delivered into his body just so it can function.  They know nothing of the detailed calculations involved in deciding how much insulin he should get for each crumb of bread or bite of apple that passes his lips.

An average person does not realize that keeping my son alive and as healthy as he is has taken a lot of work and involved some serious stress at times.  Diabetes does not stop at night and neither do we.  My son is tested throughout the night and if he is high or low during that time, he must be treated.  Nights become more dangerous because unlike the day when he tends to notice fluctuation in his blood glucose levels, at night he will sleep through all but the most extreme highs.  Whether we are up for 15 minutes during the night or two hours, life goes on and the world does not notice what we had to do to keep my son alive and healthy.

The biggest irony of diabetes personally is that the harder you work, the more normal you look,  the more people think that you are exaggerating just how much work it takes.  Diabetes is an invisible disease.  With the exception of a blood test, a needle or a pump, no one “sees” the challenges that diabetes presents. They don’t see the hard work behind the scenes. They tend to think that you must be over-blowing the fears and concerns that you have.  They do not understand that the reason that you or your child looks so healthy is because of hard work not because diabetes is "no big deal". 

How do we change this? How do we balance getting people to understand the struggles while showing them that diabetes does not stand in the way of being who you want to be? That is yet another challenge but its a challenge that many with diabetes do daily with a strength and confidence that inspires us all. 

 

Sometimes your the bug...

In honor of "throw back Thursday", here is a post from June of 2009...

Sometimes you're the windshield, sometimes you're the bug

Today I am definitely feeling like the bug. It was after midnight and of course I was dying to get to sleep. I set my alarm for early next morning...my boys' last day of school. I found a meter and a strip. I grabbed a lancet, waded through all of the junk that my youngest son had left on the stairs to his room rather than putting away and was off to test. One last check for a few hours. One check and I could sleep! We had been out for pizza to celebrate good grades so I was sure that he would still be high. He had been 16 (288) earlier so I was certain that I was going to be able to rest.

Wrong! I took the meter. I filled his finger with blood. The strip refused to suck. What the???? Okay, I cleaned the finger. I got more blood. I tried again. It just barely accepted the blood. I waited for the reading...E5. Error! Not enough blood. Oh the lovely four letter words that were on the tip of my tongue as I headed back downstairs again. I would try this one more time.

New meter. This one had to be better. New strip. Same lancing device. Back up the stairs, this time grumbling and picking up items as I went. I threw the items off to the side for my young son to deal with tomorrow and headed to his bed. Once again, I lance his finger. Once again, I got a large amount of blood. The strip sucked this time. I walked towards the stairs not even considering that I might have to correct. Good thing...he was 3.2 (57)! More choice words as I shuffled off to get some juice. I filled a glass, found a straw and went back upstairs for a third time in less than five minutes.

My son was not keen on drinking. I finally got him to sip. He drank t all except the last few drops which fly out of the straw and all over his pillow.  My cream pillow cases now have spots of red strawberry juice on them! I am choked. I hate diabetes. I clean the pillow cases as best as I can and then I wait. Why are 15 minutes a lifetime when you are dead tired and simply want this day to end?

Yeah! 5.5 (99) and I was off to bed for two hours. Oh the fun! Oh the joys! Oh where is my DexCom Seven Plus????

Psychic Connection?

The other night was night two of tossing and turning which in itself is not entirely unusual. This night was different though.  I was completely tired and ready to drop.

I had read a few pages of my book, done some relaxation exercises but sleep would not come.  After awhile anxiety began to creep in. I tossed and turned some more.  My mind began to take off on its own. There was no way to reel it back in.

I thought of my oldest son living up in Alberta.  Had he been injured at work? I would have heard if he had. I tried to shut my mind down again. I tossed and turned some more.  I thought of my youngest son. Was he testing at night? Was he in trouble? Had something happened? I again worked to calm myself down. Both boys, or someone around them, would have contacted me if there was a problem.  I was being foolish.  I was overtired. I had too much on the go. I had too much time on my hands.  There were a million reasons for me to be tossing and turning. Driving myself insane was in no way helping the situation. By 2am I finally fell asleep.

When I got up the next morning, I wondered if this had just been a reaction to so many years of interrupted sleep.  Was my body going through some sort of withdrawal? It has not slept through the night for any extended period in 20 years.  There was bound to be some issues at some point. I decided that I would try herbal tea with my book the next night.  All would be fine. My kids were still alive. No friends or family had been injured during the night. Obviously my anxiety was unwarranted. It was probably just my body being strange....and then I talked to my youngest son.

After a bit of chatter, I asked him how his readings were.  "Good except for last night. I was up all night because of a bad site.  I got it fixed though and was perfect during the day." BINGO! There was the source of my anxiety!  He was in trouble the night before.  Well not trouble, but you know what I mean.

I have spent almost 14 years somehow waking to most diabetes related events. I would wake at unexplained times when he was low or high.  Something would bring me out of a deep sleep and make me test him.  We have no CGM.  I just somehow often "knew".  Perhaps this knowing did not know distance?  I am not sure. Some people would say that I was crazy and this was just a coincidence.  It could be. I am not sure but I do know that I slept a little easier the next night.  Any tossing and turning  I experienced that night didn't have a higher level of anxiety attached.  As long as my son is also waking and dealing with things...well I will probably always worry and be concerned but hopefully I will find a level of calm. If I don't, I will text! 

Tides of Change

” Artificial Pancreas approved by FDA”  Sounds great doesn’t it? Its sadly right up there with “Scientists find way to cure diabetes”…in mice.  Well, its not quite that bad but it is media hype that does not quite match the reality of the innovation.

The Medtronic Veo insulin pump has been available in Canada for quite some time.  For a change, we were able to avail of a new technology before the US market. In this case, it means availing of a technology that shuts down your insulin pump if your CGM tells the pump that you are low and dropping. This is a pretty great feature but does not for many equate to a true “artificial pancreas”.

A number of people in the diabetes community feel that a true artificial pancreas is more in keeping with Dr. Ed Damiano’s Bionic Pancreas project rather than these smarter pumps. His pro-type has been used on adults and children with Type 1 diabetes in real world settings. A bulky model at that moment, but it has given people with Type 1 diabetes a freedom that they have not experienced since prior to their diagnosis.

Dr. Damiano’s approach combines the use of insulin, glucagon, a CGM, a smart insulin pump, and finally an iPhone.  With all of this, he is able to create a pancreas for people like his son who live with Type 1.  Those who have listened to his presentation (like myself) walk away amazed and inspired. Those who have used the system talk of an experience like nothing that they have ever imagined before.  They were able to enjoy meals without carb counting. They had nights without testing.  They experienced relatively stable bg levels. It is truly amazing.

This research is not funded by an insulin pump company. This researched is fueled by a father’s desire to keep his son safe.  David Damiano was diagnosed with Type 1 diabetes at the age of 11 months. This amazing project has given my own son hope where he didn’t have a lot before.

There are many great changes in the wind for people living with diabetes. Whether we are looking at a bionic pancreas, an artificial pancreas, or simply the improved accuracy of Continuous Glucose Monitoring systems.  Diabetes care has moved forward a lot since our journey began over 13 years ago. I am excited to see it move forward much further in the next 13! The next challenge will be to ensure that people living with diabetes will have the ability to access these improved technologies.