18 years of life with type 1 diabetes

18 years have passed since my son was diagnosed with type 1 diabetes and still, I remember it like it was yesterday. March 17, 2000.

The day started out sunny but by the end of it a horrible storm would hit my world and nothing would ever be the same.

We drove through a raging snowfall to take my lifeless 2-year-old son to the hospital.  There we were told that he had Type 1 diabetes.  They would monitor him for the next 24 hours to see if he would live or not.

Thankfully he survived that day but the fear never left me.   Before we left the hospital I was terrified of taking him home. I worried that I would make an error in his insulin and cost him his life.

When we got home, I did make mistakes.  Because he was so young, he didn’t know how to tell me if he was high or low. We didn’t have continuous glucose monitors then either.

If he fell asleep, I would panic.  The glucometer would be taken out before anything else.  I would clean his tiny finger, get a drop of blood almost as big as the pad of that finger, and apply it to a test strip.  30 seconds later I would finally learn if he was low or simply a toddler in desperate need of a nap.

Over the years he would learn to tell me if he was high or low.  His attitude would sometimes tell the tale for him.  When he short-tempered and trying to kill his brother by throwing things at his head, he was definitely high!

Eventually, he learned how to tell if he was low.  He would come to me and say he felt “weazy” and needed some juice.

We moved from injections to an insulin pump by the time he was 5.  My family couldn’t handle seeing him sitting by himself eating meals at set times when there was a better way. They helped us to pay for that first Cozmo insulin pump.

Our life was changed when his pump arrived.  No longer did we have to deal with 6-8 injections per day.  I was able to allow him to graze.  This was an incredible freedom for a small child and mom.

Puberty came with its own challenges.  The teen years were much like those of children without diabetes.  There were good times and bad.  Somehow we made it out alive and that is more than can be said for some children with diabetes.

My son is now 20 years old.  He has lived with diabetes for 90% of his life.  That makes me want to cry.  90% of his life has been dealing with injections, infusion set pokes. finger lancing, carb counting, high blood sugars and lows.  He has learned how to workout while managing diabetes  He goes out with his friends at night and as a few drinks all while dealing with insulin, test strips and diet.

My son works in the construction industry and must keep his pump warm when temperatures dip to below -30C.  He manages to test and combat lows all while wielding a hammer and trying to get his work done.

He lives thousands of miles away.  His roommate has known him his entire life.  They watch out for each other.  He knows about my son’s “broken pancreas”.  I wish that neither of them ever had to learn what diabetes was or how to handle it but life had other plans.

18 years.  It amazes me and saddens me.  I am so blessed to have a strong, young man who is still doing so well after all of these years.  It fills me with gratitude to think of all of the love and support that has guided me on this journey.  I still wish that he didn’t have to be on it.  I can’t believe that 18 years have passed already.

18 is just a small blip in his life.  I look forward to watching the next 18 years and another 18 after that.  Who knows what technology will have in store for him then.  Perhaps he will live to say “I used to have type 1 diabetes but now I don’t”.  I certainly hope so.

Planning on moving to insulin pump therapy? Download our ebook for great tips and things to think about when meeting a pump rep.

People still don’t know the symptoms of Type 1 Diabetes 15 Years Later

symptoms of highs and lows

On my Facebook news feed, there has been a lot of mention of a child who was recently diagnosed with Type 1 diabetes.  Many children are diagnosed each day but this story is getting greater attention because the doctors missed the symptoms of type 1 diabetes. She was not diagnosed until she was in a coma and now appears to have brain damage.

I can’t give you the details of this particular story.  I haven’t followed it.  I’ve seen the photos.  My heart breaks for the family and the young girl but I can’t sit down and read about them.  I can’t follow their story.  It cuts me to the core because I know that there but for the grace of God go I.

15 years ago, it could have been us

It was almost 15 years ago when my then two-year-old son was behaving strangely. He was clingy and tired. He was constantly soaking his diapers but he also was constantly drinking when he was awake.  We couldn’t keep him away from fluids. If we restricted what he drank to try to save his diapers, he marched his little body to the fridge and would guzzle apple juice from the carton.

We had taken him to the emergency room.  He had the flu we were told.  We waited for him to get better but he didn’t.  We made an appointment with our family doctor and our world came crashing down in waves.  Our doctor thought he had diabetes. He had ketoacidosis.  He needed x-rays.  He had to go to another hospital.  This was very serious.

I understood x-rays, hospital and serious.  My son was laboring to breathe in my arms and his body was cold.  It was serious but it couldn’t be that serious could it? He had been healthy all of his short life.

A trip to another hospital led to another wave of terror.  Now we were told new things. We heard diabetes again. We heard brain damage, heart attack, stroke, kidney damage, and “if he makes it through the next 24 hours.”

Today the symptoms of Type 1 Diabetes are still being missed.

That was almost 15 years ago.  Someone missed checking his urine or blood during the first visit to the emergency room. They missed the most obvious symptoms of Type 1 Diabetes and it almost cost my son his life.

Today we have insulin pumps, rapid insulin, continuous glucose monitors, and sensor-augmented pumps.  We have meters that read bg levels in under five seconds but also continue to have children literally dying because a diagnosis of diabetes was missed.  A routine test of urine for sugar or ketones is not done when they are checking for everything else.  Doctors assume that its flu season and the child must just have a bug.

diabetes symptoms

Its not their fault.  We feel that it is when its our child but they have to know so much and what ails the human body can be such guess work.  They could help themselves and our children however if they remember to add that one little screen to routine blood or urine work-ups.  A stick in urine will still show the presence of ketones.  Asking any parent of a child with diabetes how long it takes.  Its a matter of seconds and the urine sticks are cheap. 

Know the signs of Type 1 Diabetes

In 15 years a lot has changed.  Our meters no longer take 30-60 seconds to produce a reading.  There are other background insulin options besides NPH.  Insulin pumps are now so smart that they can talk to continuous glucose monitors.  Continuous Glucose monitors are no longer items that are blinded and reserved for only select hospitals.

Type 1 diabetes is finding itself in the mainstream media.  Insulin pumps are being shown and discussed in various television shows.

Despite all of these strides ahead, children are still dying.  People still do not know the symptoms of type 1 diabetes.  As a parent, I didn’t know what diabetes looked like or even that I should be looking until the signs were literally posted right in front of me.

Healthy children get sick but they don’t need to die.  We need to work harder to get the word out there.  Families should not suffer this pain. No one should die or suffer the damage of undiagnosed type 1 diabetes in 2015.

Know the signs. Download our free copy of the highs and lows of diabetes here.

Taking a Low in Stride

DING!

I check my phone. Who is texting me at 6 in the morning? I really wanted to sleep in until at least 8 today.  It wasn’t my phone.  It must have been my iPad. Probably my oldest messaging me to tell me that he is up for work.  I had been teasing him about over sleeping.  I tried to go back to sleep.

“Your phone is ringing.  Answer your phone. Its your phone. Please answer it!”

Nothing good comes from a phone call at 6:30am.  I see my youngest’s phone number. I hear a deep voice.  He had  a site issue the day before. I am sure its my ex-husband calling to tell me that my son ended up in the hospital or they need help.  As my mind clears, and I hear “we need to make some changes. I was low at 6am.”  I realize that it is my son!

“What are you doing up this early?”

“Got to get my exercise! The early bird catches the worm! You can’t sleep your life away.”  says the child who can easily sleep until two in the afternoon!

Hold on! He said he was low. Now he is saying that he is taking a morning walk.  My brain is starting to clear and this does not sound like a good situation.  I ask him if he is still low. He says no but he is walking and taking breaks just in case.  He swears he is testing and he is okay…and then the connection is gone.  I call him back. It goes straight to voice mail. I call again. Same thing. I try to go back to sleep but my imagination fires up in high gear. What if he went low and fell in a ditch somewhere.  I text him to call me.  I try to go back to sleep. It’s not happening.  I call again.

Finally after about 10 minutes I get through. He had been camping with friends, got up this morning and was walking back to his father’s house. He was no longer low.  The low was earlier.  I asked if he had over bolused the correction from his site failure, been drinking, or made a bolus mistake in some food that he ate.  He said to no to all of the above.  I am not sure that he would have honestly answered question number two but I threw it in there amongst others so he could say yes, without saying a specific yes to the alcohol part. Either way, we decided to leave the low for another night because the corrections may have had an impact…amongst other things.

We chatted for a bit longer until he informed me that he was back at his dad’s and was hoping for a big cooked breakfast before his father headed off to work. We discussed bolusing strategies after his morning walk and then said good-bye.

I tried to go back to sleep but at that point I was sadly too awake to think about it. Instead and I lay there and realized that this was a foreshadow of times to come.  Times when he would be by himself and possibly calling to bounce a diabetes strategy off of me (or not).  Times when I would worry and wonder if he was safe after a low.  Did he fall and there is no one to help him? Those are things I will worry about but he also showed that he was okay.  He was taking it all in stride…literally. I will have to learn to do that too…one day…some time..later.morning-walk

 

D-Math Muddle

There should be a warning in life to prepare you, some sort of course you could take, or as my son would suggest–an app that would do all of your diabetes related math. I can handle adding up carbs in a meal. I can subtract fiber.  I can even follow the formula for an extended bolus.  I can establish the carb factor for many homemade meals.  Figuring out how much basal my son needs at certain times can however be a nightmare!

Last night he had the brilliant idea of taking off his pump before a workout.  He planned to use the “disconnect” feature which gives him part of his missing basal upfront and then the rest at a specific time so that there is no basal missed when the pump is off. Smart kid! The only problem was he was high before disconnecting.  Do we correct the high? Probably not because he is exercising.  He has a cold.  His body is fighting germs.  Exercise may not be enough to cut it.  The pump of course gave a suggestion for the correction but it hadn’t factored in those two key details.  Mom had no mathematical formula to do this with so my solution? Wing it! Take a smaller correction and hope for the best!

The next question came in the form of how much basal to you deliver before exercising? He figured he would be untether for about 45 minutes but the pump would only allow 50% of the basal rate.  Was he going to need all of his basal rate when he was going to be exercising anyway? Probably not. Where is that calculator that will tell me how much he will burn while exercising to the Body Beast as well as completing his own routine? Oh yeah, its more of the “Mom Guess” formula. Joy!

I assume my guesses did okay.  He was 7 (136) at 3am and woke up at 4(72).  My pancreatic skills sufficed for that round of exercise.  Let’s hope I am as brilliant for today’s battle. Math-problems-

Blog Week LOVE!

Spread the Love – Sunday 5/19 Link List

Wow Day 7 of Diabetes Blog week already! I apologize for missing out on yesterday’s Art Day.  Its a long weekend here in Canada and honestly…I am enjoying a country weekend with limited internet access and creative supplies. I did not want to miss sharing some of my favorite new blog finds however.

I have always enjoyed the honestly and talents of Diabetes Blog Week founder and organizer Karen Graffeo.  After reading Scott Benner’s new book “Life is Short, Laundry is Eternal”, I have also taken the opportunity to look at his blog “Arden’s Day“.   

This week I made sure to check in on many of these and other great diabetes bloggers. I was touched by Scott of “Rolling in the D”s day 4 post on “coming out of hiding“.  I was so happy when reading about the favorite D-memory on Nacho Blog.  I hope my son will have such an amazing employer!

Finally, I got the chance to sit and read posts by Mike of “My Diabetic Heart”.  While I have followed his tweet for some time, I don’t often have a chance to click on his posts but after reading this wonderful post from Day 2, I definitely will make the effort to do so in the future!

Thank you everyone who shared this week and I am looking forward more amazing reads!

Better the Devil I know

 
Day 5 and today’s prompt..Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?
This may seem weird, but I would not trade for any other chronic disease.  Each one has its challenges and struggles.  I think of people I know with asthma–they have to carry inhalers at all times and never know when an attack could strike.  They do not always occur during the day.  If an attack happened at night, would someone be there to help?
There is epilepsy.  My aunt and uncle both live with this disease.  My uncle has been seizure free for enough years now to be able to drive and live a “normal” life but the fear of never knowing when one could hit? The embarrassment they sometimes feel afterwards? No thank you.
There is celiac.  That would be easy right? Wrong.  I have considered trying a gluten free diet and then I looked at all of the “stuff” that you have to stay away from.  Its bad enough reading carb counts, watching fat and dealing with fiber and protein but looking for hidden ingredients in food? Add to that the high cost of those foods without gluten  No, I think diabetes will do. Granted with celiacs, you don’t have to carry around “stuff” but you have to be on your toes with every ingredient in every piece of food you think about eating.
Diabetes sucks. I hate dealing with it. I would love a cure but as they say “better the devil you know”! Has this devil given me a new respect for other chronic diseases? Absolutely! Before life with diabetes, I know I took things for granted.  Now when I sit down to a meal with someone and we don’t have to count the carbs or deal with bg levels, I almost feel like something is wrong! Its not normal to do that–not to test or calculate!
I better understand parents who struggle for school supports for their children.  I “get” adults who need time off work for health related issues. I hurt for those who have to struggle to get medications and medical devices paid for by insurance or public health care systems. I value my health in a new light. I appreciate each day in a way that I did not before diabetes.  We are all (usually) happy to be alive but knowing how fickle diabetes can be, brings that happiness and gratitude to a new level.
Do I attribute this empathy with the DOC? Honestly, probably not.  It comes from life experience–watching my son nearly die.  The diabetes online community has brought people into my life who have situations that have made me work harder as an advocate.  It has brought stories that keep me aware of how deadly this disease is.  Most importantly, it has brought me friends and people who also have learned greater empathy and strength because of this beast. Florida Vacation July 2007 110

Life is Short Laundry is Eternal: Book Review

Life is Short Laundry is Eternal Book Review Diabetes Advocacy

Life is short. Laundry is eternal is NOTHING like what I expected. What did I expect? I don’t know but I should have been warned of a few things before starting.

First I should have been warned NOT to read this book in public.  There are too many times that Scott’s writing evokes either tears or laughter or both.  This can be embarrassing and hard to explain when reading in public places. 

Second, I should have been warned that this dichotomy of emotions would start within the first 20 pages and continue for the entire book!

This is a book for everyone!

Because this book came in a package with a diabetes how-to book, I very much expected a book about diabetes.  I was wrong.  Diabetes is huge because his daughter has type 1 diabetes but diabetes is secondary to the book’s wisdom and insight.  I quickly went from…what sort of diabetes peeps should read this? To…my cousin and her husband should read this because they live this same life and I bet they can relate! To…my sons should read this. To…everyone should read this.

“Life is short. Laundry is eternalis about love.

No this isn’t a life-altering book with new and shocking revelations. Its a simple book about love presented in an honest and touching way.  Scott writes about his mother’s support, his love for his siblings, the relationship with his wife, and of course the developing relationship with his children from a unique perspective–that of a stay at home dad.

In this day and age, stay at home moms can be the brunt of ridicule   What do they really do anyway besides watch afternoon television?  The stereotype for a stay at home dad is a thousand times worse.

Scott breaks through all of those barriers and shows how important the roles of parents are–whether they are the ones working in the home or the ones considered the wage earners.  He shows the incredible value of both partners and how vital it is that they work to compliment each other.

There are so many noteworthy pages!

As I have written before, I can judge how good a book is by how many pieces of paper are torn and left as bookmarks to refer back to or how many pages are now marked with highlighter.  “Life is short. Laundry is eternal” sees a lot of both.

Scott’s reaction to an examination of his wife during their first prenatal visit upon finding out they were expecting their first child is both honest and hilarious…”I remember looking at Kelly and thinking, F**k, getting her pregnant is ruining all of the fun that boobs bring to my life!” and he manages to keep this tone up for the entire book.

We empathize when he drops his son or loses him in a store. We take to heart the amazing advice he provides on page 81 to “keep moving forward, ask for help when you need it, never give up, and scream at the top of your lungs once in a while, things should turn out fine almost every time. Maybe not as you pictured…but pretty damn good.”

And then there was the diabetes diagnosis.

My biggest mistake when reading this book was when I took it to my doctor’s office to read before my appointment. I was at the point when Scott and Kelly’s daughter Arden was diagnosed with type one diabetes.

I always have a hard time with diagnosis stories.  The fact that this little girl was diagnosed at 2 years old, the same age as my own son was, should have told me to keep the book in my purse and NOT read it in public but I didn’t heed the warning signs. Instead, I fought back the tears and pretended that I was there because of a cold.  So much of what he wrote could have been written by me.

“She was only two. Do little kids get sick like this when they’re two?” was so similar to the feelings that I had when my son was diagnosed. It couldn’t be that serious–could it? He was so small. Scott talks about feelings of “dread, anger, shame, and more pressure to be perfect than I had ever experienced” and I knew exactly where he was coming from.

Reading, “I wish that I could tell you that it only took a few days, weeks, or months to shake the feeling that type 1 diabetes brought to me, but in all honesty, it was much longer.  I didn’t begin to feel normal again for two years, and the interim was overflowing with new, frightening and potentially defeating daily situations.” Fit perfectly with the advice I had recently given people at a webinar.

This is a book about family.

Is this the book to read if you want to learn how to cope with life with diabetes? Perhaps it isn’t.  Diabetes is not the focus of “Life is short. Laundry” is eternal, living life is! Scott’s open and frank discussion about life, love and making the most of every memory is advice of value to all of us.  This book should be read by everyone who loves to laugh and values their family. His unique perspective and wonderful humor made this book a pure pleasure to read and a book that must be shared with everyone in your life–young or older.

Baby steps forward perhaps?

Sunday morning brought a vision that shocked me to the core…my son weighing his cereal! I was tempted to take a picture but I didn’t want to scare him or prevent him from doing this again. scale

Now that may not seem to be a life altering event to many.  It is something he has been told to do on a number of occasions. I have even shown him how his eyeball has been seriously off but telling him and seeing it happen are two very, very, very different things! There was no harping. There was no “Where is the scale?”  He actually did this on his own! Did it result in perfect bg levels? I have no idea.  Honestly, days later I remain so shocked by this occurrence that I haven’t checked. I am just hopeful that he is learning.

That is, I was hopeful until 3am this morning when he bg level was dropping after a strenuous workout the night before.  At that point I was just irked that he hadn’t listened to me.  I had told him to reduce his basal after exercise. I was positive that he hadn’t.  Once again, I was up for an hour in the middle of the night after being ill the day before.  Something was going to have to give!

I decided that if he hadn’t listened to me and caused me to lose sleep because of it, I would be taking back my sleep in the morning and he could deal with making his own breakfast and lunch (yes, my kid is spoiled and Mom cooks a hot breakfast and prepares his lunch daily despite his age)!

Well it sounded really good at 4am. It still sounded great in my mind at 7am when I was prepared to dish out my consequences to his ignoring my instructions. Unfortunately when he told me that he had done what I told him.  He exercised hours before bedtime and felt that he was okay (as per Mom’s instructions). My argument was gone.  He was learning. He had made a judgement call based on advice received from Dr. Mom and she was wrong. Darn!! I headed of to the kitchen to get breakfast.

We discussed the fact that exercise can have an impact up to 24 hours later.  More work to do but dare I hope that after all of these years, some of my lessons are starting to sink in??

Disability Tax Credit Change Happy Dance!

Disability Tax Credit change happy dance

Yesterday I did something I haven’t had to do in close to ten years…I filled out my son’s Disability Tax Credit form.

For those who are not in Canada, and those in Canada who just don’t know, the Disability Tax Credit(DTC) is a credit that people with diabetes who are insulin dependent can use on their taxes to reduce their taxable income. People who receive the DTC are also eligible for the Registered Disability Savings Plan and children, like my son, who receive the credit may receive a Disabled Child Benefit through the Child Tax Credit.

See if you might qualify for the DTC with our free quiz

The Disability Tax Credit (DTC), for people with diabetes, is not given because the government views diabetes as a disability.  It is given because people who are insulin dependent require insulin to live–they require Life-Sustaining Therapy. Life-sustaining therapy is a subcategory of the DTC.

Years ago, I embarked on a lengthy journey to see this tax credit be given to people with diabetes.  At that time some people got it, some didn’t.  It simply seemed to depend on your stamina and the whim of the Canada Revenue Agency agent processing your application.  You can read my real-time frustrations here but to make a long story short, after a lengthy time frame, the legislation was amended and people with diabetes were given more fair and equal treatment.

While some friends were given the credit for a lifetime, my son wasn’t. I
knew it was personal.

I wasn’t paranoid honest! I would go to events and see the CRA booth set up. As I walked by and they saw my name, they would instantly recognize me.  I was sure that having agents of the Canadian Revenue Agency recognize your name was not a good thing!

Visions of audits and extended periods of time spent on my returns haunted my nights. With this in mind, imagine my anxiety at having to complete a new application for my son?

I had been advised that my son’s Disability Tax Credit status would change on January 1, 2013 unless my credit was submitted earlier.  We had a diabetes clinic appointment the next week and the doctor had told me to bring along the form for her to sign.  I was still nervous.

Would they still recognize the name? My last name had changed. I have gone back to my maiden name.  Would they still make a connection with my son and his last name? Would I have to fight to prove that yes, we really and honestly do intensively manage his diabetes care?

We really do use up well over 14 hours per week in diabetes-related junk. I had won this battle once.  Thousands have since had their applications approved.

The tax agency couldn’t hold a grudge forever could they? My mind was cynical but confident. Others get the credit. I help others, including adults, get the credit.  My application would not be denied!

I then received an email from a friend.  “FYI…in case you didn’t know…” and she proceeded to send me a copy of a memo that noted CRA had made changes to the disability tax credit guidelines.  All children under the age of 18 who have diabetes and have applied for the Disability Tax Credit would now be approved without further question.

Happy dancin!! Happy dancin!!! This was AWESOME!

Diabetes still isn’t sexy!

Happy Canada to all!! Here is one of my favorite posts inspired by a great parent of a child with diabetes….

October is Breast Cancer Awareness month. Everyone knows about breast cancer. If you are a woman like me, you fear it.  Everyone knows pink.  Everyone knows about losing a breast, chemotherapy and all of the other nasty things that come along with that horrible word–cancer.

November is Diabetes Awareness month. Very few know about diabetes.  Most people think it happens to someone else.  They don’t think its serious.  They are not sure if the awareness color is blue or grey…and aren’t really that concerned.  They know about blindness and amputation but that is not a given so its really not that big of a deal.

Its the ignorance of the disease that is frustrating.  The “its no big deal.” and “You worry too much.” comments that kill you.  I recently had a teacher ask me if we could arrange my child’s highs and lows around an exam schedule.  She was well meaning and very sincere.  She thought that perhaps with warning of when a test was coming, that we could make sure that my son did not go high or low during that time. She was told by myself and one of her colleagues that it didn’t work that way. 

It is hard to make people “see” what those of us who live with diabetes in our lives 24/7 “see” each day.  They don’t understand why we test during the night and deprive ourselves of much needed rest.  They haven’t had a friend not wake up from diabetes.  They don’t understand how quickly a low comes on even after you have recently tested.  They haven’t seen a child pass out in the middle of a playground because they went low and didn’t know how to tell you.  They don’t understand why we are so fearful of ketones.  They haven’t seen the how quickly they attack our loved ones leaving them weak, frail, and clinging to life and how long it takes to get rid of them. 

To most people, diabetes is that disease where you can’t have sugar (I mean its called “the sugar” isn’t it?).  Its that disease that Grandma had but she liked to sneak cookies so its no wonder she went blind. Its not like cancer or a serious disease. No one dies from diabetes.  Parents who test, hover, and want you learn about that thing called Glucagon are just those overprotective people who need to learn how to let their kids just be kids.

I don’t know how to get the majority to understand.  As someone recently said, diabetes is not sexy.  It is not a disease about pretty pink ribbons and cleavage.  Its a disease that is grey and about blood.  There is nothing attractive about diabetes.  You can’t see a pancreas.  Don’t get me wrong. I am very attached to my breasts and would love a day when we don’t have to worry about breast cancer but after years of being my son’s pancreas? Well, it may not be a sexy organ and it may not have any appeal to the general public but I guarantee it has my utmost respect and I would not want to lose it either.

So what is the answer? How do get more people to understand? We keep going as we are and then some.  We advocate. We educate. We communicate.  We teach those who want to learn.  We tolerate some ignorance and try to help them to understand what this disease is really about. Its a long road. Its frustrating at times but with each person who learns the reality? Well its another person who wants a cure almost as much as those of us who live with it.
October is Breast Cancer Awareness month. Everyone knows about breast cancer. If you are a woman like me, you fear it.  Everyone knows pink.  Everyone knows about losing a breast, chemotherapy and all of the other nasty things that come along with that horrible word–cancer.

November is Diabetes Awareness month. Very few know about diabetes.  Most people think it happens to someone else.  They don’t think its serious.  They are not sure if the awareness color is blue or grey…and aren’t really that concerned.  They know about blindness and amputation but that is not a given so its really not that big of a deal.

Its the ignorance of the disease that is frustrating.  The “its no big deal.” and “You worry too much.” comments that kill you.  I recently had a teacher ask me if we could arrange my child’s highs and lows around an exam schedule.  She was well meaning and very sincere.  She thought that perhaps with warning of when a test was coming, that we could make sure that my son did not go high or low during that time. She was told by myself and one of her colleagues that it didn’t work that way. 

It is hard to make people “see” what those of us who live with diabetes in our lives 24/7 “see” each day.  They don’t understand why we test during the night and deprive ourselves of much needed rest.  They haven’t had a friend not wake up from diabetes.  They don’t understand how quickly a low comes on even after you have recently tested.  They haven’t seen a child pass out in the middle of a playground because they went low and didn’t know how to tell you.  They don’t understand why we are so fearful of ketones.  They haven’t seen the how quickly they attack our loved ones leaving them weak, frail, and clinging to life and how long it takes to get rid of them. 

To most people, diabetes is that disease where you can’t have sugar (I mean its called “the sugar” isn’t it?).  Its that disease that Grandma had but she liked to sneak cookies so its no wonder she went blind. Its not like cancer or a serious disease. No one dies from diabetes.  Parents who test, hover, and want you learn about that thing called Glucagon are just those overprotective people who need to learn how to let their kids just be kids.

I don’t know how to get the majority to understand.  As someone recently said, diabetes is not sexy.  It is not a disease about pretty pink ribbons and cleavage.  Its a disease that is grey and about blood.  There is nothing attractive about diabetes.  You can’t see a pancreas.  Don’t get me wrong. I am very attached to my breasts and would love a day when we don’t have to worry about breast cancer but after years of being my son’s pancreas? Well, it may not be a sexy organ and it may not have any appeal to the general public but I guarantee it has my utmost respect and I would not want to lose it either.

So what is the answer? How do get more people to understand? We keep going as we are and then some.  We advocate. We educate. We communicate.  We teach those who want to learn.  We tolerate some ignorance and try to help them to understand what this disease is really about. Its a long road. Its frustrating at times but with each person who learns the reality? Well its another person who wants a cure almost as much as those of us who live with it.