Tips and Tricks…day 5 of Diabetes Blog Week

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Oh my goodness, today’s prompt is seriously probably the hardest of the week.  Share you best diabetes tips and tricks. Do I have any? We put one foot in front of the other hand hope for the best. Does that count?

Okay, tips and tricks…well, the first trick I learned was when my son was first diagnosed.  We didn’t have Rufus the bear with diabetes but I knew that my toddler needed to feel that he was not alone. The way I did that was to give Elmo diabetes as well.  He had a stuffed Elmo that somehow made its way to the hospital with us.  As I was learning to inject a doll, I have my two year old a needle and supervised him giving Elmo injections.

Writing that sounds crazy. I gave a 2 year old a needle? I did. It was a pen needle and the tip wasn’t in it but I gave him the pen filled with insulin and let him pretend to give his stuffed toy an injection.  He was making his friend feel better just like I was helping to make him feel better.  It worked for us!

As he aged, new issues came up and bribery was introduced.  Okay, we didn’t use the term “bribery”, we referred to it as rewards.  If he ate his breakfast without a fuss, he received a sticker.  After a certain number of stickers a reward was earned.  It worked for a bit.

What tips did we use for storing supplies? Well for us storing diabetes supplies was relatively simple…totes.  We have totes on wheels and when they were too full, we also had totes that went under the bed.  This allowed us to have a large supply of glucometers and pump supplies for times when insurance coverage was not available. My son still has both the cart and the tote.

Finally our rule for travel is simple…always pack twice what you think that you will need and then throw in a little more!  Whenever my son travels, he seems to experience a lot more highs than normal.  We do more site changes.  We bring more supplies.

I have also learned to store insulin in more than one place when you leave home.  We traveled across Canada once many years ago.  All of the insulin was in the cooler.  The cooler was somehow put on the heater setting.  All of the insulin was at risk of being spoiled. I never did that again. Insulin is now scattered among bags for safe keeping.

The final trick we have used is all my son.  When your sites are starting to peel up but the insulin is still flowing, you don’t want to make a change and your readings are still good–use duct tape! We have medical tape.  We have opt-sites.  My son uses duct tape to hold his sites in place.  Yes, they do make a mess of your skin after but they do hold your site in! –You may be a diabetes redneck when??

The Healthcare Experience…Day 4 of DBlog Week

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

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Today’s prompt is a tough one and a very interesting one.  I no longer have a lot of  dealings with the health care system regarding my son but over 16 years we have definitely had highs and lows.

Our initial foray into the world of diabetes, involved a horrific healthcare experience–my son was misdiagnosed, sent home and almost died.  Thankfully that was probably the worst of it (I know it couldn’t get much worse could it?).  The upside was when he was finally diagnosed, we were given a doctor who truly helped to set us on a course for success.

My son’s doctor believed in the most advanced treatments.  He encouraged me to learn and to try new things.  The rest of our diabetes care team was the same.  They taught us carb counting when others were still using exchanges.  Equally important, as I began to learn and explore the world of diabetes, they were eager to learn from me.  That was both empowering and endearing.  They cared–we were a team.

Not everyone we encountered “got it” however and it has been important for me to try to empower my son in his own care.  Soon after my son moved away, he had some sort of an attack (for lack of a better word).  The doctors worried that it was his appendix but they never did establish what had happened.  He was rushed to the hospital and the health care team attempted to manage his diabetes.  My son told them point blank “You deal with what brought me here. I will handle my diabetes.”  I was very proud.  My son is quiet.  It was very important for him to be able to do this for himself.

He is now a young adult.  He now sees a new team of doctors.  He faces new challenges…and as a mom on the sidelines it is driving me crazy.

He doesn’t feel that the new team has any idea about his diabetes care.  From my limited knowledge, I believe it is made up of people used to dealing with older adults with Type 2 not young people who have lived with Type 1 all of their lives.  Because of the area that he lives in, he is unable to “fire” them and find a new team.  I have reminded him to politely let them know that he does know what he is doing.  If he is showing them readings like I saw when he visited me, they prove that he does have this down pat.

For the moment, he is biding his time until he can move to a new team.  I am hoping to see him move back with me this fall to attend trade school. I have a friend who is now a CDE for adults. I am hoping to be able to get him in with her. I think it will be a huge help to him on all levels–she is a nurse, she lives with diabetes, and she has had diabetes since she was his age. A win-win-win.

In the meantime, the issue does continue to frustrate me.  Youth with diabetes have enough challenges.  They face many issues with transitions and lifestyle changes. It would be nice if more of their diabetes teams could be supportive and work with them.  There has to be a mutual respect of knowledge.

I continue to remind my son that the health care providers have something to offer and he must share with them that he is knowledgeable as well.  He finds it a challenge.  He feels his knowledge is far greater than their’s and sadly, it may well be true.  I then remind him that he has been very lucky. Over the years he has sat and spoke with some of the greatest diabetes minds in North America.  This is not a privilege that everyone has had.

Is there an answer? Balance.  I truly wish that there was more balance.  Patients are learning more now through their own research and through the experiences of others.  Doctors and educators are also learning but there must be a partnership.  Neither should be in a power position.  Both should be working toward the common goal of best physical and mental health for the individual.

What’s in a Word? Day 3 of Diabetes Blog Week

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“The pen is mightier than the sword.”

“The tongue can pierce a heart. ”

“Words can inspire and words can destroy. Choose yours well.”

We have all heard the sayings.  We have also all felt the sting of words.  Words are very powerful.  They have a huge impact on our lives.

Today’s prompt for Day three of Diabetes Blog week, asks us to discuss the power of words.  How do we feel about the word “diabetic” for example?

I always refer to my son has  a person with diabetes.  “Diabetic” is not a word I have ever used around him or anyone that I know living with the disease.  Despite that fact, he will occasionally call himself a diabetic.  Does this mean that he seems himself as the disease? No but this condition has been with him for as long as he can remember.  It is as much a  part of him as his pump, meter and lancing device are.  They keep him alive.  He has a bum pancreas.  He understands that his daily routine is different from others. He doesn’t see it as a major obstacle.  Diabetes, diabetic, person with diabetes….they all just seem to be terms to him–terms that really don’t change much.

Some people are offended by the use of the word “diabetes”.  It is a word that is thrown around by the media and accompanied with a great deal of blame.  Diabetes happens to fat people who don’t care about their health. Diabetes is what happens when you feed your child a diet of chocolate bars from birth to age 12 non-stop.

Can you see the insanity? To me, the solution is not a name change.  The name has been changed–we once had juvenile and late-onset diabetes, and now we have Type 1 and Type 2 diabetes.  Another name change personally will change nothing.  The attitude and awareness must change.

No one should be blamed for their illness.  Education must continue.  We should unite in that effort not add to the shaming.  Cartoons that suggest that if Jimmy had twelve cupcakes and ate ten that he would have diabetes are just wrong.  I don’t care that it doesn’t say he will have Type 2 diabetes…it shouldn’t say diabetes period. It is not funny. It is simply cruel and that is wrong.

There are words used in diabetes care that  matter deeply to me.  The words “test your blood sugar” for example.  Those are words  that I have worked to be exceptionally careful with.

“Test” is a word with strong connotations in our society.  It suggests a black and white outcome–pass or fail, success or failure.  Blood glucose readings are often high or low and sometimes even “in range”.  To call the task to get those readings a “test” suggests that the number will show your worth–how good of a pancreas you were.

Yesterday we discussed the mental drain of diabetes.  For me, equating a reading with passing or failing adds to that burden.  It was very important to me, especially remembering that my son has been hearing readings since he was two years old, that numbers be just that…numbers.

I tried to stress that readings were tools.  They were a reference point to move forward from.  A reading that was too high was not a fail, it meant that he needed more insulin and next time we may need to factor in something else when dosing.  A reading that was too low as again something to learn from.  Of course a reading that was perfect was reason to dance, celebrate and pat ourselves on the back for being just plain awesome.

Words are powerful.  They can make you feel strong and invincible.  They can cut you to the core and make you feel worthless.  In life, I try to choose my words carefully. I make mistakes. We all do. I am not hypersensitive to the words that others use. I take my cues from my child and continue to make sure that he is not defined by the word “diabetes” but accepting of a life with this unwanted passenger.

The Mental Part of Diabetes…Day 2 of Dblog Week

730x1207[5]The mental part of diabetes is huge.  It is  the  part that the average person  really doesn’t understand. It’s the part that scares me the most.

Everything that a person with diabetes does requires thought. Every action requires planning.  Getting up involves testing blood glucose levels to see if you can pee or if you need to have insulin or food before your first trip to the washroom.

Eating food requires a math lesson–how many carbohydrates are in whatever you/your loved one plans to eat.  Now, how much of that is fiber? Okay, how much fat or protein is in the meal? What is the anticipated activity level for the next four hours? What was the blood glucose reading before sitting down to this meal? When was the last time that insulin was taken? Is there still some insulin floating around in the body that has to be taken into account? What time of day is it? How much insulin to you normally use at this time of day to cover a pre-established amount of carbohydrates? Is there any illness or stress that is impacting blood glucose levels at the moment? After all of these questions have been answered, the totals added, subtracted, and divided, an insulin dose may be given…and you pray you go this one right.

This procedure is repeated every time a person with diabetes wants to eat anything that has any nutritious value…every time.

Going for a long walk or working out is just as an intense of a process.  A person with diabetes must make sure that they have their supplies handy.  Do they have enough glucose if they feel themselves dropping? Have they taken just enough insulin to avoid a high but not enough to cause a low when physical? Have the changed their insulin delivery for the next ____ amount of time to deal with the post-exercise drop and the adrenaline during the event? Do they have enough test strips?

That brings us to simply walking out the door.  People tease me about my purse. It’s a suitcase.  Even though my son with diabetes no longer lives with me, I still tend to carry a massive purse. Once upon a time it had to carry glucose tablets, juice boxes, crackers, test strips, needles, alcohol swabs, hand sanitizer, and medical tape to name just a few items. No matter where my son goes, he has to bring his insulin pump, meter, test strips and glucose. His pockets are never empty.

Imagine the burden of having to remember all of this “stuff”.  Imagine the burden of having to remember to test, to bolus or inject every time you want to eat or nibble at something.  Imagine the stress of having to worry how a meal will impact your blood glucose levels. Imagine having to worry about how that exercise will impact your body while you sleep. Imagine having to worry about going low while you drive.  Imagine having to worry about how that beer will impact your readings later on this evening.  Imagine simply being afraid to go to sleep because you might not wake up.

Everything around diabetes requires thought.  I worry about the toll that that can have on those living with diabetes like my son.

As a parent of a person with diabetes, how do I survive? It has its own challenges.  When my son was small and for all of the years that he lived at home with me, I survived four hours at a time.  I realized that I could only control four hours–the amount of time that his fast acting insulin was supposed to be working. If my son was in range from  7-11am, I would be happy.  I would put the potential  high at 2pm out of my mind. For that moment, I would bask in the glory of getting it right for 4 hours.

Later, I would move on to the next time slot.  Four hours is a relatively small period of time but in the world of diabetes, it can be forever and celebrating getting it right is a wonderful thing.

My son doesn’t live with me at the moment.  That has changed my role dramatically.  At first I was stressed out completely.  He doesn’t look after himself the same way that I do.  Would he test at night? Would he stay up or set an alarm to re-test? How would he handle it when he needed to make changes? How would he manage going to appointments? How would he handle stress? How would he manage alcohol or girls? I was too far away to monitor and he quickly pushed me further to the fringes.

As I was pushed away, I learned that this was his disease.  He had to find his way. I was there when he had a question. I was there to encourage. I am still there to remind him of what he does know.  I am there to watch him learn from a distance.  It is hard. It is also very freeing and that leads to a lot of guilt.  I can now turn off diabetes in a way. I don’t think about it 24/7 but he can’t and I can’t change that.

I worry about him.  He has been dealing with diabetes for his entire life.  He has no memory of life  before needles and testing.  He is quiet. He doesn’t discuss diabetes with people. I fear he will burnout. When he is with me, I help with some of his care. I allow him to choose how much help he wants.

So how do you handle the mental side of diabetes? First, four hours at a time.  Don’t overwhelm yourself with the entire day, just look at the next four hours.

Second, ask for help.  Whether you are the primary caregiver or the person with diabetes, ask for help, accept help.  You need a break. Life with diabetes is not natural. It is stressful and crazy.  Take a break by handing the reins over to someone else if only for a task or two.  They won’t mind and you will be able to breathe.

 

Why do you Blog…Diabetes Blog Week Day 1

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Can you believe it? Its Diabetes Blog Week again already! I knew it was coming and then I opened up my computer and BAM!!! Its here!! This year there will only be 5 posts so I had better get started…

Why am I here? That’s simple and complex.  For me, blogging began as therapy.  It has been a way for me to share my life, my experiences, my highs, and my lows (literally).  It has been a way for me to share my opinions and my thoughts.

The funny thing is that as I began sharing, people became interested.  Parents began to message me and tell me that they they were going through the same thing. They told me that my ramblings made them feel less alone.

Because of this, over the years my why has changed a little.  I no longer write just for me.   I now also write to show others that they aren’t alone in their trials.  I hope that I can share the serious nature of the disease mixed with the quirky and funny side of this life.   I hope to make some people think and others to simply say “YES! She gets it!”

What is the most important diabetes awareness message to you? For me there are two messages.  For the parents and people living with diabetes the message is that you can do this!I want them to know that even after their darkest days, there will one day be light.   You have options. You have knowledge.  You can use it. You can ask for help. You can turn to others and you will get through. Together, we will make it. I promise.

For those who don’t live with diabetes, the awareness message that I want them to receive is that diabetes is serious and deadly. It is not a one size fits all. It is not as simple as take an aspirin and call me in the morning. Diabetes takes a lot of work. Diabetes takes no breaks.  People who monitor their diabetes care are not obsessed, they must do these tasks to  stay alive and healthy. Not monitoring your health can cause very serious problems down the road.

Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?  It is important to me for people with diabetes to know that they can do this because my son lives with this disease.  He is now a young man finding his way.  I want him (and other people’s children) to  feel confident in speaking out about what their needs are. I want them open to learning and growing.  I want them to understand that there is a community that is there for them to help along the way.

I want  people without diabetes to understand how serious diabetes is because it almost killed my son. It has killed friends and friends’ children.  It is a deadly foe not to be taken lightly.  Too many people do not realize that and it costs unnecessary lives.  That needs to change.

I wish I could bring him back for you

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In the diabetes online community, the appearance of a blue candle suggests that someone has lost their life to diabetes.  Its a time of sorrow.  Its a time to hug our loved ones a little closer. Its a time to test a little more often and then we move on.

Last week I received a message that made my heart stop.

I headed over to a friend’s Facebook page.

I saw the blue candle.

I couldn’t breathe.

I read her post.

The tears began to flow.

Through the tears I sent a message to my friend.  She confirmed my worst fears with her words “I just want him back.”

“Oh, I wish I could bring him back for you!”

That’s what I replied through the tears.  I was numb.  The blue candle was no longer for a stranger who could have been my child.  This candle was for a child that I had watched grow through our online communications. This was happening to a friend who had been there for me through highs and lows of  16 years with diabetes.  I wished I could bring her son back to her.  The pain was too much for me, I couldn’t begin to imagine how she was feeling. It hurt too much to try.

No mother should bury their child. We shouldn’t have to mourn for those who have yet to have fully enjoyed their lives. There is something fundamentally wrong with that. It makes our hearts ache.

When we hear of a child lost, we hurt but we push it away. It happens to other people.  It is horrible but it happens to other people.  But what about when it doesn’t? What about when it hits your family?

Last week it hit my family and the pain is still fresh.

15 +years ago, I became connected to the internet.  I reached out to find “parents of children with diabetes”.  I found an information email list, or so I thought.  What I really found was a family.

I found people, some that I would meet, some that I would talk to on the phone, and some that I would never know beyond the keystrokes of a keyboard. All of them would become family.  They would be by my side through the good times and the bad.  They would understand diabetes –its peaks and valleys but they would also understand me.  They would be there for me at all hours from around the globe.  They were Friends for Life–they were family.

Over the years, some of those connections have been neglected.  Our children have grown.  Some of  the children have become parents themselves.  We watched each other’s lives on Facebook and occasionally wished each other well.

Other connections remain strong. We reach out regularly.  We still see each other. We have kept in contact and fondly look back on where we have been.

No matter whether we are close or drifted when tragedy strikes, we are all one big family again. One family united by pain.  One family sobbing with each other.  One family holding each other in virtual hugs with real tears.

Tragedy isn’t supposed to hit us. Not a direct hit. Not taking a child that we “knew” and watched grow but it has.  And it hurts like no other.

I know that the pain will fade for some of us.  It will dull a little for my friend but that missing piece will never be replaced.  I am lucky.  In 16 years, my son has stayed quite healthy.  In all of this time, I have only known of one person–whom I had met, spoken with, and been friends with, who had died because of diabetes. Now there are two.

I don’t want there to be any more.  We need a cure.  We need better access to treatments.  We need more awareness. We need more…

We will continue to work harder. We will bike more. We will walk more. We will advocate louder.

Our hope will remain.

We came together because of diabetes.  We stayed together because of an incredible friendship that knows no borders.  I pray that one day we will celebrate a life without diabetes.  Until then, hug your loved one a little closer today.  Send prayers and strength to the families who have lost someone during our fight. I am grateful to each of you who have become such an important part of my life.

 

 

Mothers Day Reflections

In North America, Mothers Day is this weekend.

I have seen that JDRF Canada is doing promotion this week on #Type1derWoman  This looks really fun and I can’t wait to see more.

A few years ago, the DRI did a segment on the Real Moms of Diabetes.  A few of my friends took part. It was equally as moving.

And of course there is the incredible poem written by my dear friend Linda Kaniasty that mothers in the UK put to video.  It still makes me cry.

All of these posts have me thinking about life as a D-momma.  My role has changed a lot over the past 16 years.

I started out as the mother of a toddler with diabetes.  I was lucky.  He didn’t mind the shots.  He was okay with finger pokes.  He hated to eat however.  That was a challenge.

If I had it to do all over again…and it was 2016 and not 2000, well I would be putting him on a pump right away.  There is no need to fuss with injections, a pump would give us the flexibility to let him eat the way  he wanted.  I would have a CGM so that when he fell asleep, I would know if he was just napping versus having a low and couldn’t tell me.

I would still use bribery.  Stickers and rewards were a fabulous way to get through everything from potty training to meal fights.  I would still allow him to inject and have control of the diabetes care for his toys.  This was a great way to give him power.  I would still worry and log like crazy but that is me.

Eventually my toddler grew and went to school.  The worry again was tangible.  I had friends who would be watching out for him in school but I was terrified.  There was so much that could go wrong.

If I had to do it again, I would have released the terror.  He was left in the care of teachers who truly cared about their students.  He had friends who cared about him.  They all would do their very best…or call me if in doubt.  I didn’t need to hover. I didn’t need to stress–as much.  It was okay.  Yes, there would be wrinkles along the way but they were small. He would survive.  We would all learn. It is important to relax a little during these years as greater challenges will come.

As my child became a preteen, the issues again changed. We struggled to find a balance between what he should be expected to do and what I should be expected to do.  I ached that he was expected to do so much.  I grew frustrated when one of us failed.  If I had to give myself advice for that time looking back it would be that it will be okay.  You will find your way.  If he didn’t die,  learn from it…both of you.  Work hard. He is listening in his own way.  It will be worth it.  He can stumble a bit.  Its okay to wipe his knees but he will get it.

When my son became a teen…well didn’t that change everything!  There were now hormones.  There was the teen brain.  There were struggles.  There were worries.  How do you balance allowing him to be a normal teen (with all of the worries that comes with that stage) and being a teen with diabetes? You ask for help.  You reach out to those who have been there…and you pray.

As a teen, my son decided that he knew it all.  He decided that he really didn’t need the care of Mom any more.  He moved away and decided to finish high school while living with his father. I foresaw many problems.  Some of them came to pass…some didn’t.  I felt like a failure. I was a parent whose child didn’t want to live with them.  People reminded me that it wasn’t about me, this was about him.  It still hurt.  My one clearly defined role now became more blurry than ever.

My son is now a young adult.  He is 18 and learning to live with the choices that he has made.  He has stumbled.  He has tripped a few times but he has done okay. He is getting stronger in more ways than one.  He understands his body he tells me.  He is tightening his control.  He has learned. He knows he can still come to me when he loses his way.

So what would I tell that Mom of a toddler now? You’ve got this.

What would I tell that mom who is watching her son head off to school? The school and his peers have your back.

What would I tell that mom of a teen? He really did listen and learn when you were sure he wasn’t.  Somehow you will both live to go through another stage of parenthood.  Some days will hurt but most days will be a blessing because when you look back at where you have been, where things could have gone? Life is amazing!

There are still challenges.  We still have a long road ahead of us.  No matter how old my children are, I am still their mother.  They are still my children. I worry. I care. I love them deeper than I could have ever imagined.  They make me shake my head at times but they also make me proud.

For all of you fellow D-mommas, take a moment and be proud.  Be proud of YOU and all that you have accomplished when faced with this huge burden.  YOU are amazing!

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