What's in a Name?

If there is one positive thing to come out of the tragic passing of Robin Williams, its the fact that so many people are talking about depression.  There is a huge effort to help people to understand the dark insidious nature of this disease--and the fact that it is a real disease not just a feeling of melancholy that we all experience now and then.

Clinical depression is a prolong sadness that has a chemical component that most often requires specific medications to begin to improve. It requires the use of a medical doctor and can be physically debilitating.

The most interesting thing that I have read in the past 36 hours or so since I heard about Robin Williams' passing is a debate that I hear in the world of diabetes all of the time--people would pay more attention to this disease if it had a different name.  People think of depression as fitting things like "rain on your wedding day and a free ride when you already paid" to quote Alanis Morrisette.  These are not exactly issues that lead a person to take their own life...unless they are already experiencing a much deeper pain.  There is a feeling of a need to disassociate the mental illness from the emotion.

In the world of diabetes, we see this same desire often.  People feel that the label Type 1 diabetes does not go far enough. It doesn't show the true nature of this disease.  It does not remove itself far enough away from another condition that is often associated with poor diet and the ability to be "cured" with diet and exercise.

Personally I am always led back to Shakespeare when this debate is brought up.  "What's in a name? that which we call a rose By any other name would smell as sweet."  Okay, diabetes is not as pretty as a rose and when you can smell "sweet" when dealing with diabetes we know that you are in serious trouble but you get the point. A name means nothing. It is all about the awareness.

Type 2 diabetes is not limited to people who are overweight. It is not magically cured by diet and exercise, but it is able to be managed that way unlike Type 1 diabetes.  Type 1 diabetes will not be cured with insulin.  Wearing an insulin pump does not mean that you don't have to think about diabetes ever again.  Misconceptions.  Fallacies. Misinformation.  It happens with every disease.

The general public is ignorant about many things. I knew nothing about diabetes until it tried to steal my son in March of 2000.  I now know more than some medical professionals but I know little about Multiple Sclerosis or other diseases. We educate ourselves to what is important to us. It is our job as people who have become experts is to educate the outside world to the important parts of our conditions.

They do not need to know how to carb count but we must work to teach the general public that there is no known cure for diabetes...unless you are a mouse.  An insulin pump does not mean that you have diabetes "really bad" and it does not cure your diabetes. It is a management tool that requires work and fine-tuning but is preferable by many to help maintain better blood glucose levels.  Myths must be debunked to create better understanding and support.

Much of the same can be said for depression. It is important that the stigma be removed--just as the stigma of diabetes needs to be gone.  No one "caused" either condition.  Both require medical attention and serious work to be able to manage.  Ironically depression is twice as common in people living with diabetes as it is in the general population and if you have depression but don't currently have diabetes, don't worry because people living with clinical depression are more likely to develop type 2 diabetes!

Robin Williams is getting people talking about depression. Mary Tyler Moore, Brett Michaels, and Nick Jonahs have all done the same thing in the world of Type 1 diabetes.  Our goal as people who live with these conditions each day is to make sure that the conversations do not end and to take this opportunity to educate people on the realities and dispel the fantasies.
Please remember that if you are experiencing a prolonged sense of sadness that is impacting your daily routine or having thoughts of suicide, please contact a medical professional. If you are having trouble dealing with life with diabetes, a counselor or life coach may help you to find new coping mechanisms.

The Bionic Pancreas Moves Closer to Reality

For the past year or so we have been hearing clips about the Bionic Pancreas Project.  I was lucky enough to have heard  Dr. Ed Damiano present about his  work at the CWD Friends for Life Conference in Toronto.  It was the first time that I was truly excited by what was happening in diabetes research.

This was a project that was privately funded and motivated by a father’s love. There was no political agenda to hold things up.  There was only his passion and desire to see his son safe when he could no longer be there to watch him at night.  His drive pulled at my heart and for the first time gave me hope.

This summer, clinical trials are continuing.  More adults are getting to experience life with the bionic pancreas.  More children are getting to experience it as well. According to the latest video, they are now reaching the stage to change the design making things more streamline.  This is moving quickly to become a reality!

Being me, and spending so many years advocating for access to better treatments regardless of income or insurance coverage, I can’t help but wonder what direction this project will take.  To me, and I am sure to Dr. Damiano, this device is the diabetes equivalent of a pacemaker and should come under the larger umbrella of our health care system making it available to everyone who is insulin dependent.

At this stage, they are far from knowing how things will proceed in terms of distribution.  We will have to wait.  While we wait, I will continue to work to see access to insulin pumps and CGMs for all people with diabetes regardless of age.  I will continue to put money into my son’s RDSP just in case he does have to purchase the system out-of-pocket to begin with.  If need be, we will advocate for access for everyone to this life changing technology but for now, I will watch and cheer from the sidelines.  I will hope that this will be the technology that changes the life of my son and all of our children with diabetes (no matter what their age).

Diabetes Greeting Cards

Yes, you read that right...Diabetes Greeting Cards!

I often get requests from people who want to share a post on my blog. They want to write about how to cure your diabetes by eating their miracle food. They want to tell my readers all about their awesome socks that will instantly cure all that ails you and things that you didn't even know were ailing you. Once in a blue moon, someone will send me something relevant and I will think about posting what they send me.

A few weeks ago I received a request from a woman who wanted to promote her greeting cards. My first thought was...wow! She called me Barb and not "Dear Advocacy". I decided to read a bit further. They had a really interesting concepts, they were cards for people with diabetes but they weren't stupid. They were actually kind of cute. Enough from me on the subject though....

I'm Nene Adams and I'm an insulin dependent Type II diabetic. I've also been a greeting card designer since 2007.

Following a stay of several weeks in the hospital for a diabetes related medical problem, I was inspired to do some research into diabetes. I learned a lot, including the fact that there seemed to be very few greeting cards designed specifically for diabetics.I thought there needed to be more and better choices for a group of people the mainstream card retailers were ignoring.

Me and my partner, Corrie Kuipers, have teamed up with a few other talented artists - Doreen Erhardt, Betsy Cush and Sharon Fernleaf - to create a line of greeting cards for children and teenagers/young adults with diabetes. The messages are positive and supportive, not just a generic "get well." The images are colorful and often humorous in each artist's distinctive style.

We hope these cards will help inspire and encourage diabetic kids and their loved ones. http://www.greetingcarduniverse.com/get-well-feel-better-cards/diabetes

Mom! It looks like I've Been Shot...Again

In honor of Throwback Thursday, here is a humorous post from May 4th, 2010. Enjoy!

Last night I wrestled my son to the ground and later heard about the consequences. You see said child, admitted that no he hadn't been spending his time mulling over the perfect gifts to purchase for his devoted mother for either Mother's Day or her birthday.  In some countries I am sure his actions would have constituted a hanging offense but in our house in meant that I tackled him, interrupted his Wii game, pinned him down and tickled him.  Thankfully I still have a few pounds and an inch or two on him so I can still win. 


The downside to this fun when you have a child on an insulin pump who wears sites in his leg is obvious to those of us who live there.  After the screams of "I've gotta pee!!!!", came the grumblings of "You pulled out my site!".  With the cost of pump supplies being covered for us, it felt good to say "Well, just go and change it."  Once upon a time, I would have cried at the $20+ that I had just wasted even if it was in the name of fun. 


Being a teen, my son was in no rush to change the site and Mom had visions of highs for the rest of the evening.  The longer he waited, the less insulin he would get, the higher his bg levels would climb I was sure.  Again, being a teen and being my son, he stated that the site was salvageable and he had simply taped it in place.  I was worried.  Was the site really still in? Yes he assured me as he headed off to the shower.  His grumbling about being bested by his mother had been replaced by the comment that if Mom could wrestle him then wrestling with his brother should once again be allowed (It was discontinued after brother's elbow met son's eye and left a nasty shiner).  I attempted to burst his bubble but he still was quite proud of his logic as he headed off for his marathon shower. 


Once he undressed he proclaimed "Mom, I look like I have been shot!"  What did that mean? He told me that there was blood all over his leg.  I said that was it, the site was gone! He had to change it.  He proceeded to shower and I never got to really check out the damage.  He kindly left the dead and bloodied site in the shower for me though.  Ironically he was disgusted when he found it on top of an envelope later.  I had taken a picture and left it for him. He told me that the site should be in the garbage! Um, who left it in the shower to start with? Oy!

Another Corner Turned

The weekly bg reading review that I had dictated in September has long gone by the wayside. I occasionally ask about readings on the phone or over text conversations but I try to keep it to a minimal.  If my son gets into real trouble, he calls or texts me with his SOS.  Diabetes care is remaining in the periphery of our relationship as he strives to make it on his own. We still talk about care and I still like to know what is going on but I think I truly have turned a corner in my new role and acceptance of it.

A couple of weeks ago, I suggested that we have a phone conversation about his readings in the coming days.  My son told me that he had an upcoming appointment with his CDE.  I then suggested that we wait until after the appointment and then we could discuss what was or wasn’t done and see how we felt about it.

My son thought that was a great idea and we set our new date to chat.  Last week that day arrived.  I knew that my son’s readings had been uploaded by his educator (my son has managed to lose two cables for his pump and I feel bad contacting our rep for a third one). I went online to see what the readings looked like.

As I opened the screen I laughed and laughed.  There were a lot of boluses and insulin cartridge fills but I only saw two readings. I laughed some more! For a change, it was not me who got to look at no data and try to sort things out. It wasn’t me to go…”What gives?” only to be told that he had used other meters but didn’t have them with him. This was not my problem.  I laughed some more
.
It felt good to have that burden lifted. Whether there were or were not readings, I was not the one who would bang their head in frustration and begin the tedious task of trying to track down information. The smile remained on my face.

Later that evening I called my son and we discussed his appointment.  It had gone well. He had readings on a different meter and the two of them had discussed the area my son knew was a problem.  My son was pleased that he wasn’t told what to do but asked his opinion on the problem.  Suggestions were made by both parties and my son left happy.

Mom wasn’t needed.  For a change, that felt okay.  My son was happy. He had made his own decisions. He had been able to talk to someone about his care and share his knowledge. It was a win-win situation as far as I could tell.

I will still call and talk readings. I will still be here to troubleshoot and to cheer from the sidelines but my son really is taking charge. He can do this. I always knew he could but the fact that he is doing it makes me feel a bit better…well for today anyway.

Fighting the Darkness

 
May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)

I love being part of Diabetes Blog Week because of the vast array of topics that make you stretch yourself, think and explore new avenues.  Today’s topic is one that is very personal and very difficult. I have dealt with some of the dark issues surrounding being a parent and living with a child with diabetes in last year’s webinar “Normal is Just a Setting on the Dryer” as well as throughout my blog over the years.

Most likely you have heard about the strong correlation of diabetes and depression for people living with the disease.  Diabetes presents many management challenges in learning how to be a pancreas.  It presents financial challenges in being able to afford the best care to be able to obtain your best bg levels.  Diabetes is often looked upon as something that the patient themselves caused.  Bg levels and A1cs are often judged as “good” or “bad”.  It is therefore not surprising that the stigmas and challenges of the disease can quickly become overwhelming.

As a parent, we do not have the same direct issues as our children with live with diabetes but in some respects perhaps its a bit worse because we carry the blame for it all. We ache when our child is having to deal with any of those issues. We desperately want to take all of the pain away from them.  We feel that we would gladly carry this disease to save them such pain and anguish.

Parents struggle with their guilt.  How did we let this happen to our child? What could we have done differently? Should we have breastfed longer? Was it a vaccine that caused this? Did we pass along faulty genes? It is our job to protect our children and we may feel that we have failed to protect them in the most profound of ways…we allowed them to develop type 1 diabetes.
Now I know intuitively that this is not the case. I know that I did not cause my son’s disease but was it my fault that he was so sick before he went into the hospital? I am educated. Shouldn’t I have known something was wrong? If I am honest, I did know that something was wrong. One day in the summer prior he was pale and sick…but it was just one day and we assumed he had a bug.  Before his diagnosis when he had thrush and was not himself, we had taken him to the doctor.  He said my son was fine.  I did take him back to my own doctor a few days later when things did not improve. I could not have prevented this but still the guilt lurks.

The guilt can get in the way of parenting a child with diabetes as well. We have so many issues swarming in our heads.  We have failed our children once by allowing them to get diabetes (yes, parents may have a bit of a God complex), so now it is vital that we work to keep them as healthy as possible. We get frustrated when our children lapse in their care. We become terrified when they are in the care of someone else. Will they be able to manage? We struggle to find a balance between allowing our children to learn on their own and the need to look after them at all costs.

In my own case, there were times that I would reprimand my son for forgetting a meter or strips when I really should have thought of them myself.  The frustrations of not being able to keep his bg levels always perfect, of seeing him sitting inside waiting for a low to come up when his friends were playing outside, the injustice of him having to carry so many supplies and medical devices just to go to a friend’s house would overwhelm me and boil over into anger at the silliest things. I would then worry that I had left my child with nothing but horrid memories of an ogre parent.

As my son has grown, I have come to my biggest challenge yet…letting go and finding my new place.  For the past 14 years, my one focus has been being a mom.  I managed to stay at home with both of my boys as they grew. I was able to devote a lot of my time to diabetes advocacy efforts and the care of my children which included 24/7 diabetes care for my youngest son.  My nights were spent fighting highs and lows.  My days were spent reminding him to test and bolus and helping him to count carbs.

One day it all changed. My son decided to move back to his home town and felt it was time for him to learn to care for himself. I was lost. I would wake up in the night and there was no one to test. I would sit down at a meal and I didn’t need to count those carbs. Yes, the world of diabetes advocacy still existed but did it still need me? There were many new parents who were just as passionate and they had children at home to speak about.

I had experienced depression before when dealing with a child with diabetes. As I mentioned, the frustration, guilt and anxiety can be overwhelming.  I got through with the help of some amazing online friends as well as supports in my life that were there to pull me out when I got too far down.  It was important for me to talk to people who lived there and got it, as well as people who had no clue but just wanted me to enjoy life with them.  That balance saved me on more than one occasion.

Having my son move away was different. Yes, I had many friends how also had children move away but their children had moved away for school.  Their children were out of high school and they seemed to have strong identities of their own.  I didn’t feel that way. Yes, I had a strong identity but in part that was because I was a parent of a child with diabetes and I spoke firsthand of bg testing and the challenges of raising him. Who was I now? I was not sure. I had started to expand myself and create a new business venture but it was not heading the way I wanted it to…and then my son was leaving. I was now a complete failure. I had no idea how to get out of the darkness this time.

Once again, my heart knew I wasn’t a complete failure or a bad parent (just as it said I was not the reason my son was diagnosed in the first place) but I still felt that way. The move wasn’t personal it was about a young boy wanting to stretch his wings and go back with lifelong friends rather than continue to hang out with his mother in a city that had not provided the same life-long friends. I had to get over myself. It has taken a lot to get used to the change. It has taken a lot to find my new place even in his life.

I don’t have a cure to get out of the darkness that can accompany raising a child with diabetes. I don’t have an answer that has worked for me. I still stumble and wonder “what do I do now?”  I am lucky in that I have a very supportive partner who is patient. I am slowly dipping my foot back into a bit of advocacy work.  I am working to find my way in life.

Diabetes is a challenge in itself but it also brings many hidden challenges for those who live with the disease inside of them as well as for those of us who just carry it in our hearts. The only thing we can do is move forward.  Seek help when you need it–from friends, from family and even from the medical or counseling community. There is nothing wrong with support. It is the only thing that gets us through and its strength can carry us through anything.

A Salute to the D-Warriors

Back to it. Back to that new normal life…where diabetes isn’t in it 24/7. It is still strange but this past week with my son was also a bit of an awakening. One in which perhaps more people should be exposed to.
My son was diagnosed with Type 1 diabetes over 14 years ago. He lived with me the bulk of that time. In September he chose to move to finish high school with his lifelong friends. It killed me inside but it was a choice that he had to make.

In the past six months, I have not had to get up in the middle of the night to test bg levels, but I still wake up. I haven’t had to worry about site changes but I still am in charge of ordering supplies. My role has changed. It is still taking some getting used to.

I was thrown back into the fray last week. Diabetes came back into my life in a huge way. It gave me a new respect for my son and for all people with diabetes. It brought a new pain to my heart. I wished that others could have seen what I saw and experienced what my son experienced. Perhaps if more people did, then more doctors would fully get it. Perhaps if more people did then more politicians and insurance companies would understand. Perhaps then more research projects would be funded and there would be a greater understanding and drive for a cure.

My son arrived on a Monday after a 10 hour day of driving. He was high. I asked him what was up. He explained. “I should have set an increased basal rate to cover all of that inactivity driving in the truck. I ate at a fast food restaurant but the meal I chose wasn’t too high in fat. I may also need a site change.”

I looked up the meal that he had eaten. It was a lot higher in fat than he had thought. We discussed extending boluses to cover those high fat meals. We talked formulas and I hoped that he might remember the concept the next time he ate out.

Because of those small oversights, he was high for the rest of the evening. He went through gallons of water and found it hard to socialize when he was spending so much time in the washroom.

His visit continued this way. There were highs. There were logical reasons for them. There were mistakes made. He is only human. Together we worked to fix them. There were injections and new sites. Sites fell out and got kinked. There were replacement sites and more injections to cover the missed insulin and bring him down. There was more water. He spent more time in the washroom.

I was exhausted. He took it all in stride. We discussed strategies. I suggested changing sites a little sooner when he was having highs. He told me that when he got too high he felt a burning in his legs and after a bit he would smell a strange smell. He said it was like his brain was frying because he was so high and he would smell it happening. My heart broke.
After days of “stuff happening”…a bad site, a poor carbohydrate calculation, a bolus delivered wrong, we finally saw him in range for longer than an hour. He was able to sleep through the night without a trip to the washroom every half an hour. He was able to put down the water bottle and enjoy a casual glass of diet Dr. Pepper. The battle was over and he had won. The war would continue another day however.

As he got on the plane for his trip home, my hands-on role ended. I was no longer in the trenches with him until he had another break and came to visit. That was not the case for him. His battle would continue on the plane where I learned after he landed, that the air pressure of the plane would impact the insulin delivery on his pump. Once again, after the fact we would know the reason behind a high or low but were at that point powerless to stop it. We hadn’t known.

How stressful must this be for a person living with diabetes? My son told me how his doctor lectured him when he goes to his appointments (although I am guessing that the bulk of his lectures are just). He stated that he the CDE he was sent to was more concerned with reading him documents than teaching him something useful. He is just beginning his journey of learning to be his own advocate.

As much as I complain about his lack of self care. Each time we talk, I am amazed at how much he does know about his own care. Some of the information he has heard from my lecturing and teaching, as well as the things he has learned at CWD conferences has sunk in. He is a teen and may not always do what he is supposed to but he does have the knowledge when he chooses to apply.

It will be up to him to apply the knowledge. It will be up to him to show his medical team that he is very educated in his care. It will be up to him to decide to take care of his body. It is a huge challenge. As people who do not have diabetes, it can be easy for us to judge and demand better. It only makes sense to take care of you. You will feel better. It’s not always that easy. Stuff happens.

This week was exhausting and I didn’t have the physical toll that he did. I was the coach on the sidelines, offering help when I could. I made suggestions, I took over care, I carried a small amount of the burden but he carried the bulk of the weight.

I could see him sitting in a meeting with his diabetes team and having them see this past week’s readings. There would be questions. Would he feel defensive? I would have. Would he feel judged? I would have. Did he do his best? Yes. Do the numbers look like it? No…and yes. Readings were high, but then we had a victory and things came down…before the next stumble and up they went. Should we have known better? Yes…and no. Yes, he knows to increase his basal when traveling but no he didn’t know the carb counts for some of the restaurant foods. Even with calorie counting software, errors were made. How could we have known that the site that went into his leg would bend—twice? There are so many factors going into managing diabetes. Even for those of us who have lived beside someone for 14 years, we can’t fully understand.

As a parent it is torture. I want to fix this. I want to take it from him. He doesn’t ask me to. He knows that I will do my best. When he stumbles or appears not to take care of himself the way that I would like to see, I get upset and even angry. I understand the toll that it can take on his body. I know the toll that a causal attitude will take on him long term. I know that he has the knowledge and I pray he will chose to use it sooner rather than later. I don’t always remember the struggle to balance being a teen boy and being a person with diabetes however. It has to be hard.

I won’t quit demanding the best from him. I won’t be able to stop being disappointed when I don’t see adequate testing. I will take this week and use it as I go forward however. It has been a great lesson to share when advocating for better care for people with diabetes. It has given me a new respect for all that my son deals with when Mom isn’t there to carry some of the burden. It has reminded me of how much diabetes sucks and how despite the fact that a lot has changed in 14 years, we still have a long way to go.

The Countdown to NO SLEEP!

This morning as I woke up, my first thought was..."This time next week I will have been up during the night to check my son's  bg levels!"  I know that parents who do this every night will be thinking that I am insane but I am actually looking forward to it.

It has been over six months since that fateful day when my son moved back to his home town to live with his father and left me with an empty nest.  I still have a barrage of emotions that flow through me at any given time.  I have been a full-time mom for 20 years and a pancreas for 14.  I felt like I was terminated without notice.  I wasn't. It wasn't personal. It was a choice he felt that he had to make for his own growth. That has been something that I have had to come to terms with...and am still working on.

When my son left, I had a firm plan.  He would be in contact with me weekly.  He would share his readings with me thanks to his new insulin pump system.  We would look over readings and he would learn how to make his own decisions. I would remain as hands on as possible with hundreds of miles between us.

As with all of my plans, it was a great plan.  As with many of the plans that we make in our lives...well it was a great plan but reality was far different. The first month or so we would call each week.  He had issues with uploading his pump information but sometimes it worked.  There would be a lot of missed tests. I would do my best not to freak out and ruin our time together.

Soon he saw his new diabetes team and they had their own plan.  They arranged for my son to see a new educator on a regular basis to teach him how to handle his diabetes care.  Two teachers would confuse the issue.  My friends reminded me of how much I had taught my son over the years.  I had to step back.

I would be lying if I said it was easy to do. I have been a hands on parent for 20 years. I have been a pancreas for 14. I am a control freak. Letting go has always been really hard for me.  Letting go of something that directly impacts the health of one of my children?  Yes, the pain of doing that was physical but I have tried. 

I no longer ask about bg levels every day.  I ask about once a week how things are going.  I ask if we need to have a chat. Does he need to make any changes to his rates? Our weekly chats have drifted further and further apart to the point of the occasional text message that reads "CALL YOUR MOTHER!!!"  Followed by a phone call, a wonderful conversation and said child responding "What do you mean I don't call you? I call you every day."  I reply "in your dreams. We haven't talked in ages."  To which he charmingly replied, "Oh, well I think about you every day."  My children are smooth and have figured out how to appease a mother's bruised heart.

Like I said, the "we will talk weekly" rule quickly was disregarded.  We text daily. I know that he is alive.  He has a life that involves girls, skidoos/quads, friends, and school. Mom and diabetes are relatively far down the list because let's face it, they will always be there (at least in the mind of a 16 year old). 

Occasionally I will tell him that it is time that we chat about his readings. Recently I was struck by the similarity of me saying that and that note on the calendar stating you have to see your diabetes team--tomorrow! When I tell my son that we need to chat and review readings, I instantly get inundated with excuses.  "Well, now isn't good. I had a bad site the past few days and my readings are everywhere."  "I forgot to bolus my breakfast and was high so things are really out of whack."  There is always something but as a great friend reminded me, he knows the whys behind what is going on.  This means that he has learned.  He will hopefully also learn to apply this knowledge but for now at least in hind sight he can say, "Mom, I messed this up and this is what happened."  I guess in the world of diabetes care that is a bonus.

So for today I will count the sleeps until I have sleepless nights for a few days. I will enjoy counting carbs and monitoring testing patterns for part of the Easter holidays.  After that, I will go back to adjusting to my children growing up and being independent.  I will sleep through the night and know that I have taught them well...and pray that a Higher Power will keep an eye on them both when I can't.

 

She Exposed her Pancreas to the Storm!

April 1 Mother Nature played a cruel joke on the area that I live in. We were subjected to an incredible amount of snow that just did not want to end.  I was not happy at all.

 

To make matters just that much worse, I actually had to go out in the mess and drive! I hate driving in snow. I hate having to worry about other drivers in snow. Basically I would much rather hide under the blankets until summer but despite my disgust, out into the not so lovely winter wonderland I went.

 

As I was cruising the city streets on my way home, I watched a young lady battling the elements to get to her destination. I was seated in a lovely four-wheel drive truck that was producing heat and warming my back with heated seats. This poor child was outside walking in the snow and the wind.  I shivered as I watched her.

 

When she walked in front of the truck I saw something on her belt. I looked again. There was no doubt. She had an insulin pump on her waist! What was she doing with her pancreas out in this weather? Wasn’t she concerned about the insulin freezing? I couldn’t see her tubing but I could plainly see the pump. It was exposed to the wind and biting snow.  That could not be a good thing. I was certain that having your pancreas hang out during a nasty spring/winter storm was not a good thing.

 

Despite my concerns, she crossed the street and my light changed. I continued to make my way home but I also worried about this girl. Did she have very far to walk? How long would she and her pump be exposed to the elements? Would she run high because of cold insulin?

 

I then began to worry about myself.  Why was I obsessed by this? Because I am a mom.  Because my mind thinks like that.  Because I worry…even about children with diabetes who aren’t mine. Oh my!

Balancing Diabetes...A book review

A number of months ago, I was honored when the folks at Spry Publishing contacted me and asked if I would be interested in reviewing an advanced copy of Kerri Sparling’s new book, Balancing Diabetes. I have enjoyed Kerri’s blog but I honestly wondered about a book that suggested that you could find some balance in a life with diabetes.  What pat formula would she suggest?

Any fears or concerns that I had were quickly pushed aside as I began to devour this book. As with any book that I read and am going to review, I bookmark passages and pages with little notes of why this sentence or paragraph moved me.  In looking back at Kerri’s book, I literally have over 50 different sections marked off for mention! This has to be a great book…and it is.

As  a mother of a child with diabetes, I was also worried that I would be reading this book from the outside. Kerri is a person with diabetes and this book would be all about her right? Wrong. By page 9 Kerri’s mother shares her feelings and I could hear myself in her words “…I didn’t know what we were getting into. I just thought, Okay let’s go deal with this, whatever this is.”  Kerri’s mom goes on to say that she handled what she was given but did not want any more.  She would learn in stages because the get everything at once would be overwhelming. I felt the same way when my son was diagnosed.  I was on overload and autopilot for months. Slowly I would add knowledge and information when I could handle it…this was how we, as parents, found balance with diabetes.

This book brought out many emotions.  Reading about the burden of being shown and repeatedly told about your own mortality at such a young age made me wonder how my son feels? Is he still an immortal teen or does he have Kerri’s “heightened awareness of how vulnerable” her health was? Either way, does he also know, that I share Kerri’s mother’s feelings when Kerri told her that she didn’t care if she was high and her mother responded “For now, I’ll care enough for both of us.”  Yes, I cried reading this.

But like the title, this book has balance.  While there are many very serious conversations, humor creates a fabulous balance and brings a different kind of tears…the ones you get from laughing! Kerri’s wonderful sense of humor shines through in this book.  The topic of sex is never an easy one but Kerri takes you past the embarrassment and makes you laugh with her candor.  She shares the story of her first serious low  with her husband. It took place after they had made love and her husband lays claim  to responsibility for it happening!

Besides the amazing humor and the walk through Kerri’s life, she brings in the experiences of many other people who live with diabetes to provide some fabulous tips for living a full life with diabetes.  They  takes us through diagnosis, the trials of teens, life as a young adult, dating, marriage and even pregnancy.  Kerri talks about the sense of helplessness that diabetes can create at times–for the person with diabetes, their partner, and even for the parents.  Sean Oser provides insight on dealing with blood sugar readings, “There are no good or bad blood sugars; every result is just a number, and it tells us what to do next.” This is a motto that I have tried to instill in my own son for years.

Balancing Diabetes looks at pump starts, travel and advocacy.  Each topic is looked at both from Kerri’s perspective as well as that of  many other people in the diabetes community.
The most poignant section in the book for me, was when I saw a person state that they do NOT believe that you can find a balance when living with diabetes.  What? But the title of the book says that you will.  How could this happen? How could someone state that balance cannot be achieved? Well, that is the beauty of this book! It does not show one size fits all, pat answers. This book shows you real life. It shows real pain and real accomplishments. It emphasizes that diabetes really is a “your diabetes may vary” kind of disease.  How wonderful!

This book is a fabulous balance of perspectives and stories.  It does not tell you one way to “do it right and achieve balance”, it shows you a variety of approaches to a variety of topics and what works for different people.  The best thing is that it also tells you that you never fail. If you have been really bad about taking responsibility for your diabetes care, cut yourself some slack and make a change now.  It’s not too late. If you have been diagnosed with diabetes related complications, don’t beat yourself up. It’s not your fault.  Brush yourself off and move forward. You have got this handled. You are amazing!

Balancing Diabetes is a wonderfully written book filled with a balance of real life events that show that we are not alone–whether we live with diabetes, are parents of a child with diabetes, or just love a person with diabetes. Now hurry up and order your copy because I noticed that Amazon Canada was almost out already!

Five Tips to Surviving Raising a Child with Diabetes

This month marks fourteen years living with diabetes. They were not easy years. They still are not easy.  Each year has its own challenges--sometimes it seems like each day has its challenges!  I have had some amazing supports throughout the years however. I found a family online, some of whom I have met in person and some I still hope to meet one day.  They have helped to keep me going--offering support, words of encouragement and the occasional kick in the bum to send me in the right direction. 

 

I thought it would be a great time for me to share with you a few of the tips and tricks that have kept me marginally sane and allowed me to get up each day. 

 

1. It's okay to cry.  We all have our moments. We can't carry the full burden of worry and care. It's okay to breakdown now and then. Do it in the shower where you can scream at the top of your lungs.  Allow your child to scream too.  When you are both exhausted, hold onto each other and look at how best to move forward together.

 

2.  Find people of a similar nature.  Meet people online or in your community who get it.  Seek them out, ask them how they handle things and simply enjoy being around other people who get it.  Allow your children to spend time with these people as well so that they understand that they are no alone. 

 

3.  Take a day off. As a parent, take time for you.  Leave your children with you someone you trust and focus on you for a few hours or an entire weekend.  It will be hard at first. Diabetes will be in every other thought.  Push it further away until you can slowly feel the weight on your shoulders lift just a little.  Feel the tightness in your chest relax just a bit and breathe.  Give your child with diabetes a day off as well. Test for them, bolus or inject for them, and count their carbs.  Let them just be for a day.  They get burdened as well. Let them have that small break without nagging or worry. 

 

4. It is okay to punish your child for not doing diabetes related chores.  This one was huge for me.  As a parent, we carry some guilt when our children are diagnosed. We are to protect our children and somehow we failed and they ended up with diabetes.  No this isn't logical but being a parent isn't always about logic.  This is just how we feel. This feeling makes it very difficult to lump testing their blood glucose levels into the same realm as making their beds.  It isn't but it is in the same realm as having a bath and brushing their teeth!

 

Diabetes sucks. We all agree but this is the hand that we are dealt. Testing bg levels and somehow injecting insulin into their bodies is not negotiable...to a point.  As parents we may have to come down in our expectations of how often our child will test and we have to remember that occasionally they will be feeling so "normal" that they may forget to bolus.  It is important that we find a balance between our ideals and what is safe. We then have to remember that we can say "Since you did not test at least once when you were out with your friends last night then you will not be allowed to go out with them tonight."

 

5. It really isn't our disease.  If we are not the ones living with diabetes, it is not our disease. Even if you do live with diabetes and your child has diabetes, it is still their disease.  That is an incredibly hard concept to deal with! We want to take this burden from them. We want them to do it our way because we have been learning for years and we know best...but none of that will happen.  We will hope that most of what we have told them will sink in.  We pray that we will be that little voice in the back of their head when they are about to do something stupid.  We standby ready to pick them up and help them when they stumble along the way, but we somehow have to let them find their way.

 

For me, the last point is the hardest.  I do not want my children to have to learn the hard way.  I don't want them to stumble.  I want to protect them at all costs...but I can't. I have to let them fly.  I have to be confident in all that I taught them. I prepared them to be on their own.  They are smart. They are good children.  They are a reflection of us. 

BC Takes Another Step Forward

Last night I returned from an evening out to see all sorts of posts about an announcement from the BC government.  They have decided to expand their insulin pump program to include young adults up to age 25.  This is fabulous news! No longer will young adults entering the workforce have to turn off their pumps at age 18.

 

This is not however the final battle in this war however.  There are still people over 25 who desperately need the help of their provincial medical plan to cover their insulin pump expenses. This is a fight that we will all continue until everyone living with diabetes in Canada  who require an insulin pump but cannot afford to pay for one, will have access to one.

 

In BC, the driving force behind the recent change is not happy to sit and savor this latest victory.  She is asking that people in British Columbia “please write the Hon. Minister Terry Lake and tell him that funding insulin pumps up to age 25 is NOT GOOD ENOUGH. I am begging all of my friends from BC to even just write a short email saying that we need pump funding for all ages of people living with TYPE ONE DIABETES with no age restrictions for people without extended health benefits to pay for them. It could be your family member that is in need of this life saving device. He needs to know that this is unacceptable. Please send it to terry.lake.mla@leg.bc.ca and carbon copy to  hlth.health@gov.bc.ca, judy.darcy.mla@leg.bc.ca (NDP health critic), your MLA and the premier premier@gov.bc.ca .”

 

Congratulations to BC advocates for getting to this point!  Good luck to advocates across Canada who seek to have their provinces follow the example of the Ontario government and fund ALL insulin pumps for people living with diabetes.  This is a moment to savor…and then move forward in a war that we will win for everyone with diabetes in Canada who wishes to use an insulin pump.

 

 

 

 

 

Details of insulin pump coverage by province can be found at http://diabetesadvocacy.com/pump_coverage.htm

Diabetes Coaching? What is it all about?

In the past few weeks, I have had quite a few people asking me about diabetes life coaching. What is it? What is involved? Can you help me to get my readings under control? Will you help me to fix my dosages?

 

Life Coaching is a process driven by you.  Just like a hockey coach will help to bring out your very best hockey game by offering you skills drills, a life coach will suggest tools and exercises to help you to get the very best out of your life.

 

As a coach, I cannot change your insulin dosages but I can encourage you to work with your CDE and even suggest some great people who are qualified to do this.  I can help you to work with your moods or those of a loved one. I can help you to find coping mechanisms that work for you and your family.

 

I cannot help you to figure out how to deal with exercise and your diabetes.  There are great coaches out there like Ginger Vieria who already do a fabulous job at that and are much better qualified than I am. Again, I can help you to get in touch with someone who can help you.

 

As a life coach, and a person who has lived with a child with diabetes for the past 14 years, I listen and will offer my own experience. I work with you to find ways to deal with the issues that you are facing each day.  A life coach helps you to examine your life as a whole and see how to work on the parts that are out of whack with how you would like things to be. I work to help you to adjust to this new life.

 

You decide what needs fixing.  Together we decide how best for you to fix it.  It is then my job to keep you accountable to do whatever we have decided will help to fix things for you.

 

I am not a counselor, although I may suggest that you see one.  I am not a CDE, although they may be what you require. I am a parent. I am a certified life coach. I do have a university degree in psychology.  I have been learning about diabetes daily for 14 years. I have overcome my own obstacles and continue to meet new challenges.  As a life coach, I pass along my experiences and help you to find your own way

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If you would like more information, please feel free to contact me and we will connect to see what is right for you to help you get your life back on a track that you can once again enjoy to the fullest.

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The Beginning of a Run To Outrun Diabetes

A Run Across Canada to Outrun Diabetes…now I have driven across Canada.  I did it with two young children and my mother. It was amazing. The country of Canada is diverse and incredibly scenic. In car, we drove long hours and took a couple of weeks to make the journey
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Sebastien Sasseville will take nine months and do it on foot. He is going to break the country down into a number of marathons and travel at least 200 km per week…on foot.  He is not going to enjoy the view from a plane or even a car. He will be enjoying the view from the comfort of his running shoes.  What a view it will be!

When I drove across Canada, many people thought I was crazy.  It is an incredibly long drive.  Heck, it’s a long plane ride! Driving however allowed us to truly see the beauty of each area. We ate meals in provincial parks and were able to spend time stopping to meet with family and friends along the way. It was an incredible experience for all of us.  Now imagine running this same distance. The view will be that much more intense.  The chance to interact with many more new people along the journey will be incredible but face it you still think its crazy! I don’t blame you.

I live in the most eastern city in North America.  This means that many people come here to start epic runs much like Sebastien has.  Sadly, with a few notable exceptions, most fade off into obscurity and never finish what they have started. I have no doubt that this will not be the fate of Mr. Sasseville. He has climbed Mt Everest.  He ran 250km across the Sahara Desert.  He has completed over seven Iron Man competitions all while living with diabetes.  Running across Canada is just another challenge that he will meet.

It was with that knowledge that I layered up and headed to Signal Hill.  Signal Hill offers a magnificent view of both the Atlantic Ocean and the city of St. John’s and surrounding areas.  It is also cold, windy, and did I mention cold? I had on my long underwear, an extra shirt under my sweater and gloves that would work with my camera.  I was going to have as much photo documentation of this event as I could.

As I drove up the hill, I wondered what I would see. Would there be a big crowd or would it be small? I had been asked to spread the word about this event and I had.  There seemed to be a lot of interest but this was a particularly cold day.  A storm was brewing, would people really show up?

A news vehicle merged onto the road behind me.  There would at least be media coverage.  As I parked, I saw clusters of people chatting and working to keep warm. I saw a few people who I knew. We said hello, talked about the weather, and of course what was about to happen. Everyone agreed, we were at the start of something amazing.

The energy level was high.  There were many people of varying fitness levels and ages  ­waiting to start the run.  They would accompany Sebastien for at least the first mile.  Sebastien was busy doing an interview when I first arrived but soon joined the crowd. There were pictures of the pilot truck.  There were pictures with Sebastien.  There were pictures of the group.  Finally, he prepared to start.

The air no longer seemed cold. Sebastien thanked everyone for coming out.  The grin on his face had not left. The incredible energy and hope on Signal Hill that day was tangible.  It was the most incredible thing that I had ever been a part of. Together we began to count down to the start of this epic journey.

10-9-8-7-6-5-4-3-2-1…and they were off.  A group of runners, walkers, younger and older, pumpers, people on needles and people without diabetes.  It was powerful group.  I continued to click and watch. There was the police escort, the front jogger, Sebastien and friends, followed by the pilot truck.  As the entourage made its way down the hill, the chill returned and I headed back to my car.  I had been part of history.
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