Tag Archives: type 1 diabetes

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.

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.

 

 

He’s Got This

Over Easter, my youngest son came to visit.  Each time he visits me I am shocked by how much he has grown. My little boy is long gone and a young man is emerging. A child with diabetes is being replaced by a young person with diabetes and I stand in awe.

This time I stood back a bit more. I tried not to fall into old habits of taking over care or nagging about testing. I gently reminded. I compared carb counts now and again when asked.  I tested him at night at his request but mostly I sat and watched.

I wondered how his care was going. He hasn’t told me an A1c in years. I worried about his rates. I worried about his health.  The more I tested, the more I watched, the more my pride grew.

He wasn’t perfect.  He still doesn’t test as much as I would like but when he did test, his results were awesome. When he ate junk, which he doesn’t do as much any more, he nailed the bolus.  When he spiked because of a low cartridge and air being delivered instead of insulin, the spike was no longer in the 20s (360+) it hovered in the low teens.

I sat back and realized that he’s got this.  All of those years of preaching, teaching and sharing have paid off.  He is taking care of himself.  He is trying to protect his body from itself and doing a good job.

In a recent conversation I reminded him that he is the expert in his care.  It is his job to ensure that he is able to demonstrate that to medical professionals that he sees.  He should listen to them and be willing to accept their help but he may also have to remind them that he has been doing this all of his life.  He has been privileged to be trained by some of the very best people in diabetes care in the world.  He has a very good handle on things and a huge support network to reach out to when he is in doubt.

He explained that he finds that very frustrating.  He doesn’t want to get into a contest of who knows more when he sees someone but he feels that after all of these years he does know his body.  He is very healthy.  He has got this…and he has!

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Governments are a mess. Private insurance is too expensive.

Governments all over are in a mess.  Private insurance is out of reach for too many.  What is left?

Last week our province handed down its latest budget.  Earlier in the month, the federal government released its budget.  No matter where you look, governments are cutting back and taking programs away.  They are not interested in expanding coverage, sharing coverage or adding new coverage to their medical expenses.

We can tell them all about the cost savings that these programs will offer but all that they see is the outlay and staffing.  They don’t see the benefits.  It can be very frustrating.

As I was logging in to write this post, I happened to open an article on the funding of the Edmonton Protocol.  For over 16 years, this therapy has been available as a last resort for people with diabetes and guess what? Governments are thinking twice about funding it as well!

What are we to do? If governments are not going to be funding treatments that have been around for 16 years, what is going to happen when the artificial pancreas comes to market? Most provinces are not funding sensor augmented pumps at this point. The majority of provinces do not provide adults with any sort of financial assistance for pumps.   What can we do?

This is where my mind as been stewing. I don’t have a lot of answers but there must be one.  We need change.  Our adults living with diabetes need reasonable access to the latest diabetes technologies to keep them healthy and productive members of society. There has to be a way to help those who just cannot afford to carry the complete financial burden.

It would have to be a  private venture.   The public system is a mess no matter where you live.  It would have to be accessible to all– a system that is reflective of what you can afford.

Private insurance companies exist but they are often too  expensive.  Many private insurance policies (either purchased by individuals or by companies) do not cover enough diabetes supplies to last a person more than a few  months.  If they do cover more, they are often so expensive that only a few can afford them.

There has to be a way for private industry, pharmaceutical entities, and those in need to somehow all have their needs met.  There has to be a way to create something new that would be sustainable and yet help those who cannot afford to help themselves.  There has to be a way to bring together all of the players to create something that doesn’t see favoritism or a monopoly but rather a way to help everyone in need through the help of everyone involved.

And this is where my brain stalls and spins.  How would you fix the problem? How would you provide better access for diabetes supplies to everyone who needs them? Where would you turn? I really am curious…

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I am dead tired…and feeling guilty

I am worn out, dragged out, dead tired…after just two nights.

I am out of practice.

I want a CGM.

I want a cure.

I feel guilty. I can’t wait to get my sleep back again.

My son came to visit for a few days.  It was the best Easter gift…having both of my boys here with my for Easter dinner! I was over the moon.

Diabetes had to tag along for the ride.  It could have stayed behind.  It played better than it has on some visits however.

I was pleasantly surprised when I got up to test my youngest son on the first night.  He was a perfect 5 (90).  I didn’t sleep. He was perfect. Exactly in range.  What was next? Would he rise? Would he go low? I didn’t sleep. I rested now and then. I checked.  He dropped a bit. Not enough to worry about. I tried to sleep. I worried.

The next night we had the opposite problem.  His cartridge had run low.  His blood glucose went up.  It didn’t go up as high as it had on previous visits.  He is even more fixated on his health and improving his control on his own.  He corrected. He had command of this.

Once again I awoke during the night. I went to his room and tested.  He was high still. He corrected.  I went back to bed.  I wondered if he would drop. I wondered if he would go higher.  I worried. I tried to sleep but I worried.

Tonight he will be in charge of his own care again.He will be the one to wake.  I will wake up just like I have for too many years.  I will wonder what his readings are but I will be able to  roll over and go back to sleep. I won’t be kept awake with a low. I won’t wonder which direction a high will take even with a correction. I will simply roll over and try to sleep…but I will feel guilty because I can just roll over.

I put in my time. I had 16 plus years of sleepless nights between babies and diabetes.  My son has had 16 years of diabetes too.He doesn’t get an end.  As I said, he has become very conscious of his health and his body.  He told me that he already has one faulty organ, so he has to make sure that he doesn’t have any more.

He is growing up.  He is a young adult now. He takes most  things in stride.  I still wish that he could have an end to testing, injecting, carb counting, lows, highs and all of the rest.  Wishing doesn’t make it so. Feeling guilty doesn’t change allow us to change places.  This is just the way it is.   I will keep wishing for that day when I can say “that was the way it was.”

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Saddle Sores

 

My sons came to visit for a weekend over the Christmas holidays.  The visit was short but very much appreciated. It took a minute or two to get back into the hang of having diabetes in our house.  Sadly however, we quickly fell into the routine of…

“Did you test before eating that?”

“How much did you bolus?”

“How many carbs do you think are in those candies?”

My children are now young adults and while I always said that I would test my youngest son any time he was in my house, I also try to respect his privacy.  This means that when he is here, I ask him ahead of time if he wants me to test him at night.  The answer is always the same…YES!

This time around I thought of my mom as I struggled to test at night.  My mom had taken my children at certain times when they were growing up.  As long as I gave her carb counts and a testing schedule, she was good to go!  After the fact she would regale me with tales of sweat trying to get blood out of my son’s fingers at 3am.

Now it was my turn.  The meter had changed.  We were finally getting around to trying out his new Dario.  The pump was one that I had never used except during vacations.  I was a newbie…and it showed!

I struggled to get blood.  The Dario has no back light so it was a challenge to see if the blood was actually hitting the right part of the test strip.  I had the strip in backwards. I still didn’t have enough blood.  And so the fight continued.  My son woke up more than once during these “helpful” nighttime sessions.

I had to figure out how to correct with the “new” pump.  I can correct on a Cozmo in my sleep.  This pump is not a Cozmo.  After I was shown by a sleepy young man how to bolus a correction it made sense but as I was scrolling through the pump screens at 4am, there were some not nice words being said!

I don’t know if I was a lot of help to my son.  I don’t know if he got a break but for three days there was someone else to bounce numbers off of.  For three days there was someone else to be up during the night.  I know he appreciated it but being back in the diabetes saddle definitely gets a bit more challenging with time!

Know the signs…Lives are at stake

The other morning as I scrolled through my social media newsfeed I read…

“My 14 year old brother died of kidney failure after living his life with diabetes.We are looking for help to pay for his headstone.”

“Teenaged boy dies from undiagnosed diabetes”

I saw blue candles.  I didn’t read any more.  My heart cracked a little more.

Sadly, these stories are not new.  I have been hearing and reading them for almost 16 years.

Did I hear them before March of 2000? No.

Why? Well, one reason is most likely the lack of social media in my life at that time.  I was not able to turn on my computer and read about it.  I didn’t have the technology.

The other reason is I didn’t pay attention. I didn’t know.

Before March 17, 2000 I knew next to nothing about diabetes.  I knew a lady who had it.  She took a needle or two.  She drank diet pop and people said that she didn’t take very good care of herself.

There was a young boy with diabetes that my mom knew when I was growing up.  He didn’t do anything different but some days he just sat on the couch rather than playing with the rest of us kids.

That was the extent of my diabetes knowledge.

I didn’t know that without insulin injections that woman would die.  I didn’t know that she had to balance her insulin, food and diet or she could pass out…or die. I didn’t know that the little boy was probably low and his body was recovering from a lack of sugar and too much insulin. I didn’t know that this was a very serious disease with very deadly repercussions if ignored.

Since 2000, I have changed…a lot.  The world has changed…a lot. Sadly, children and young adults are still dying because no one recognized the symptoms of diabetes.

The symptoms are still tricky.  I thought my toddler was teething or had the flu when in fact he was dying before my eye.  It doesn’t matter that the symptoms could be a mirade of other ailments.  We have to put the possibility of a diabetes diagnosis on the radar of doctors and the general public.

They have to run through the gamut of cold? Flu? Diabetes? A simple urine or blood test will rule out diabetes.  That is not being paranoid or over-protective.  That is the only way that we can begin to save more lives.

Know the signs
Know the signs

Its the most wonderful time of the year!

I am trying to be calm, but I am so terribly excited.  I have gone over my presentation for one last time.  I am thinking about starting my laundry and finding a suitcase.  Inside, I feel like a child getting ready to head to Disneyland tomorrow.  Most people would think I am crazy.

I will be spending most of my weekend inside a hotel.  I won’t be sharing that time with my partner.  We won’t be enjoying a private, romantic getaway.  Why would I be so excited?

Because this weekend is special.  This weekend has taken two years to plan and  arrange.  This weekend I get to spend time with some of my absolute favorite people on the planet.

I will be with  friends who have been there through thick and thin.  They have encouraged me and given me the kick that I have needed through the highs and lows of life over the past 15 years. They are my diabetes family.

I truly consider it an honour to be able to be a part of the Children with Diabetes Friends for Life Canada conferences.  I know how important these conferences are for families so it pained me a few years ago when I found out that there would be no more conferences in the immediate future.  With the work of many incredible people, we were able to change that.

This weekend, CWD will return to Canada after a brief hiatus.  Families have been talking about it since the end of the last conference.  I am so excited for them.

Many people don’t understand why I get excited about this conference.  They figure it’s just the time away or something like that.  They are wrong.  This is a time, an event, at which I can give back.  I can share what I have learned over the years with families and in return I get smiles, hugs and new friendships.

To sit in a hotel filled with people who have experienced what you have been through is a huge gift.  Each time that I am able to share in that experience, I consider myself to be the luckiest person on the planet.  It brings a song to my heart and a smile to my face to know that I get to be a part of something so incredible!  Have to get some laundry done and get packing!!FFL-Canada-2015-450

 

Dealing with Diabetes Online Burnout

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Its an interesting topic…burning out from your social support network.  It sounds silly but it happens. It has happened to me many times.

I first entered this world 15 years ago.  I was very alone and I found an online community that let me know that other people knew exactly what I was going through. Over the years, there would be squabbles but in the darkest hours there was always support.

I would step back and remove myself from certain groups.  I would feel attacked and even though I knew that some of my core support were there. I would step back.  I would unplug.  I would disconnect.

15 years later there are so many more ways to connect to people online than I was using back then.  The mailing list that was once my lifeline has been replaced by Twitter, Facebook and other outlets.

As the way we connect changed, so have my connections.  I offer advice now and then and provide support through Facebook groups. I share Tweets and take part in blog weeks. I post to my own website and Facebook page but not the extent that I once did.

Am I gun-shy because of the attacks I have taken? No, that is not it.  I have taken some vicious attacks, have shaken my head, and simply continued with my life and my work. Sometimes that has been easier said than done but the DOC has given me a core group of people who always ground me and remind me of my truth.

So how would I advise people to handle Diabetes Online Burnout?

  1.  Walk away.  It sounds easier than it is but seriously, sometimes we need to unplug, unsubcribe, un-visit places that are hurtful for us.
  2. Find your core peeps and keep them close.  Whether you frequent Facebook groups, Forums, or Twitter, you will find a group of people who click with you.  They understand you and you understand them.  Savour and work on that relationship.  They offer real friendship.  Remember that.
  3. Don’t take it personally.  You can’t tackle every issue.  You won’t be an expert in all realms. Its okay not to be a part of every battle.  Offer whatever support you have available even if its just a retweet, but don’t allow yourself to feel that you have to do more or that you aren’t doing enough. You are doing what you can and that’s amazing!
  4. Its not a contest.  If you make a difference in one person’s life, you are a super star! There are many people in the DOC that we would love to get to know better but out there, someone really wants to know you better as well.  Everyone is amazing and has something to contribute.  Don’t feel that you are any more or less than someone else.
  5. Make time to enjoy the outside world.  There is more to life than the online world.  We can become enamoured because we have found a place where people “get us” and then we are devastated when someone doesn’t. Take time each day out for your family, your pet, and for YOU!

Burnout isn’t a bad thing. Its just a time to regroup so that you can move forward stronger and more confident than ever!