Wednesday, May 30, 2012

Unsafe at School Reaches BC Medical Journal

Last week, the BC Medical Journal published an article called "Unsafe at School: Advocating for Children with Type 1 diabetes."  It is my understanding that the document was created by parents and endorsed by many in the medical community.  It was a huge feat to have this reach such a publication.  It added weight to the argument that children with diabetes in schools do have special needs based on their medical condition. Parents are not asking for help for their children with diabetes in schools just because they are too lazy to take time off work to run to schools.  There are many more concerns here and those concerns are justified.

The article does a great job of highlighting the real impact of hyperglycemia on learning. They note that extended exposure to hyperglycemia can have a long term impact on cognitive performance.  The authors further state that because some parents are not able to get to school themselves nor are they able to get a friend or relative to go to the school to inject their child, they are put on inferior insulin regimens and the children are often forced to run high during school hours.  As previously noted, this means that the student's ability to learn in the afternoon session is severely reduced. 

This problem could be alleviated if aides or other school staff were allowed to assist with injections or boluses.  Sadly, the article states that the BC Nursing Support Services feel that such people are not qualified to do these tasks. Personally this is political rhetoric.  If this was the case, that a teacher or aide could not be trained to inject insulin or deal with glucagon, then why are we as parents, not sent home with a nurse when we leave the hospital with our child? Parents of children with diabetes come from all walks of life and all education levels and yet everyone of us is required to test, inject, and manage glucagon if the need arises. We are trained by diabetes educators and if we do not use that training we are charge with criminal negligence regarding the safety of our children. I have spoken with educator and classes of students wanting to work in the school system, most are very willing to learn and be taught to assist their students to the best of their abilities.  

I do have two small issues with this article however, but let me preface first that I know how hard it is to get consensus and that some points have to be made at the sacrifice of others.  It can often be necessary to use extremes to get the attention of those most important.

My first concern is the argument of children with diabetes being labelled as disabled.  I was recently made aware that the Human Rights Commission of Canada has chosen to recognize diabetes as a disability.  This is a very sticky area.  Many people with diabetes work very hard to show that there is nothing that they cannot do.  They have fought various organizations to prove that they are just as capable of flying planes and working in the protective services as anyone else.  They do not see diabetes as a disability.  My son would fall under this category of people.

Other people feel that someone with diabetes is disabled. They have a disabled pancreas.  The need to have an external source of insulin, to test blood and carry glucagon is not normal. The fact that a person with diabetes cannot always participate in activities because of hyper- or hypoglycemia, in some people's mind makes them disabled.

In the US, this concept is widely accepted.  In the US, people with diabetes are considered disabled and protected both at work and in school by the American Disabilities Act.  This allows students to receive, on paper at least, protection of their rights to inject, have assistance, and be exempt from writing exams when out of range.  Sadly, schools still fail to provide their students with the proper protections, often discourage parents from implementing these plans, and are looking to remove school nurses from some schools leaving young children with diabetes in a similar situation to our own children here in Canada.

There is no easy answer.  We do need protection for our children.  We do need standard policies in place--not just for our children but for the educators as well. Staff need to understand what diabetes is.  They need to understand how each child is unique in their needs.  They need to understand that while the needs of a child with diabetes change over the years, there is a need for assistance from pre-kindergarten all the way up to grade 12 and beyond. 

This was my second issue with the article.  I wished that there had been a way to expand their focus a little more.  A child who is five may not be able to inject themselves or understand how to bolus but a child of 15 may not be able to see his/her meter when are high and properly handle their diabetes care.  A child of eight may do poorly on an afternoon test because their blood sugar was high but a child of 16 may fail a provincial exam because they were also high but no one noted their blood glucose levels and waited for them to be in range to have them take that test.  Finally, a child who is 7 may not yet recognize when he/she is low and will require an adult to keep an eye out for them when the stumble on the playground and feel out of sorts.  A child of 17 needs the same protection when they stumble in the halls because they are low but are mistakenly sent to the Principal's office for being intoxicated in school. The rights and safety of children of all ages must be protected. They all can be in dangerous situations just because they happen to have Type 1 diabetes.

I applaud the initiative and the passion of these authors. I truly hope that the legitimacy that this article gives to some of the issues children with diabetes in schools face help students not just in BC but throughout Canada.  Our concerns are real.  Diabetes is deadly.  Treatment methods are changing and schools must be able to accommodate the needs of our students, allowing them to use the best possible treatment methods in school so that they can be at their very best to learn while in the classroom.

Saturday, May 26, 2012

You just never know


Recently a friend shared her daughter's experience and I wanted to share it with you.  Its a fabulous reminder that no matter what we think or do, Diabetes is always with us.  We must always be prepared and never let our guard down.  There is no situation in which it is okay to forget a meter, insulin or extra glucose.  Things happen and when Diabetes is also in the room, normal things can be dangerous!


Hello Barb. I wanted to let you and your other readers know about something that happened to my daughter. We were staying at a hotel in Toronto last weekend. She went to the pool area for a bit, then got stuck in the elevator for 50 minutes. We rode it up to our floor, then the door wouldn't open, then it continued up and down without opening for 50 minutes. She was in contact with the hotel people with the emergency phone and the hotel contacted our room to let us know what had happened and that they were getting her. But...it took 50 minutes. After she was released from the box she wanted to walk the 7 flights back to our floor, and the security person escorted her. The hotel went to great lengths to make up this inconvenience to us. I hold nothing against them. My reason for sharing this is a reminder that diabetes must be considered for everything we do. Even something as innocuous as an elevator ride...you don't know how long you could be in there. Now I have another time to ask her if she has her glucose.


This experience sent shivers down my spine and I am so grateful that it was shared.  How often have we run out somewhere for just a minute without worrying too much about supplies but how often can we get sidetracked by friends, stuck in traffic or caught up in an emergency that does not allow us to get home when planned.

Diabetes does not care what situation you are in. You must always be on guard. You must always have your supplies...no exceptions because, well you just never know!

Friday, May 25, 2012

YES WE CAN!

Yes, I am back on the same topic one more time and have brought along our good friend Bob the Builder because "YES WE CAN!" get Mike Fisher, snowboarder extraordinaire and person with Type1 diabetes on The Ellen Show!!!

I had planned to move on to a new and very important topic today that was sent to me by a friend but its equally important for us to keep the momentum going on this.  As I explained the other day, Mike Fisher is a great young man with amazing courage.  He appreciates what Ellen gives back to the community and hopes that by appearing on her show, he too can give even more to the Diabetes Community.  We can help him.

Many of you read and shared my first post.  Many of you have gone to The Ellen Show and asked them to put Mike on stage with Ellen.  Many of you have even tweeted about it but now I want you to do more...tweet more! Share more! Get more people involved!!! Let's make this VIRAL!! In my province, the story of a person with over 100 cats in their home went viral so why can't the incredible story of a young man who lost his leg in a car crash, was diagnosed with Type 1 diabetes, has become a world class snowboarder and incredible motivational speaker for young adults also go viral? We CAN make this happen!

On our way home from the George Canyon Heroes Tour, my youngest son asked me to help Mike get on Ellen. He said that we needed to do something. I promised him and my friend Sandy that I would do just that. I would blog, I would bother people I knew and people that I didn't. I would tweet. I would post on my website. I would do all I could to get the word out.

Yesterday I made contact with a person from a major news outlet. I asked that they consider a human interest piece on this wish.  They were game!  They wanted to know how much interest I had generated thus far.  They want to interview Mike.  They want to talk to my son about why he decided that Mike should have this wish.  All is amazing except for the last part. If you remember, my son has sworn off the media.  He did he last photo shoot for a CDA follow up report almost two years ago and he swore that his time in the spot light is officially over. Its going to be a hard sell to get him to talk to the media BUT I want to be able to tell her what an amazing job the Diabetes Community and the WORLD has done to share this (maybe then she won't notice his mumbles, grunts and attempts to end the interview before it starts).

I have heard that yesterday Barbara Walters did a piece on diabetes that was possibly her worst ever interview. She did a terrible disservice to the diabetes community and has many people terribly upset.  Let's fix this by getting Mike Fisher on Ellen. Let him educate the masses about the realities not further extol the myths!
Please, please, please, continue to contact the Ellen Show.  Please continue to share this on your Facebook page. Please send it to your support groups and private groups asking them to help us.  Please tweet about it, blog about it, tell your friends and family about it.  I am serious...if a house full of cats can go viral then the desire of one young man to help another see his dream of dancing on the Ellen Show should also be able to reach an incredible number of people as well! 

Let's show the world what a powerful voice we can be! We can change policies but for today, let's just change the life of one young man and improve the way the world sees people with Type 1 diabetes with a great ambassador!

Wednesday, May 23, 2012

Can We Get Mike on Ellen? YES WE CAN!

For quite a few years now, I have been blessed to be a part of the Canadian Children with Diabetes Friends for Life Conferences.  At these events, I get to talk to many wonderful people and enjoy conversations with amazing individuals.  It was at one of those events that I first met Mike Fisher. He was a seemingly quite young man with a sweet smile and a story that would amaze you. It was his story that brought him to the event--to inspire and empower our children.  He has continued to do so for a number of years since.

As an adventurous young teen of 18, Mike Fisher took a friend's motorcycle for a ride.  Thanks to an error made by the driver in the car in front of him, he was in a life threatening accident that resulted in the loss of his leg.  While in recovery, he reminded his mother that his shifting leg was still good and that, to me, set the stage to show what a resilient young man he would be, could be, and is!

Mike soon was walking again and ready to take on more of life's challenges.  His next challenge was again something he never imagined. Once again his life was in jeopardy as he was diagnosed with Type 1 diabetes at the age of 19.  It is no surprise that Mike states publicly that this second blow was exceptionally difficult and depression did creep into his life. 

Mike is now 25, a member of the Canadian Paralympic snow boarding team, and an inspiration to many children and adults alike.  He was recently a part of the five day, George Canyon Heroes Tour sponsored by Animas.  Myself, my son, and Larry's daughter all had the privilege of listening to Mike and the other heroes speak.

Mike still has an infectious grin and a  developing mischievous side.  George Canyon complained about him throwing his leg into George's lap while they were flying!  Mike has become more open, more confident in speaking to groups over the years.  Besides looking forward to the 2014 Winter Paralympic Games, he now also has a new goal...one that we can help him to achieve! 

Mike getting his groove on!
I never knew it before May 14th, but it seems that Mike Fisher can bust a move with the best of them! He is quite the dancer whose current goal is to be on The Ellen Show and dance with her! It is our job in the diabetes community and beyond to make this happen. Can we do it? Well in the words of Bob the Builder, YES WE CAN!

I had somehow heard rumour of Mike wanting to do the Ellen thing but I really didn't pay attention to it until the Heroes tour. At that point, they put on music and I got to watch him perform. It was fabulous! He is great! He is entertaining and he would be a perfect fit to the Ellen Show! At the show, George Canyon asked the audience to video tape Mike Fisher and send the videos to Ellen, begging her to put him on in November for Diabetes Awareness Month. When I got home, I emailed my friend Sandy Struss and asked her if she knew "how" one went about doing this. She gave me the link and I promised her I would sent it to everyone I knew and people that I didn't. We would make this happen!
Yes, his presence would be larger than life :)

There are a lot of people who do neat things. There are a lot of people who want to be on tv so what makes Mike so special you may be asking yourself.  Why should you take your time to fill out the Ellen request and share this story with your friends? 
Yes, he lost a leg--tragic. 
Yes, he has diabetes--so do a few other people. 
Yes, he battled depression--who doesn't these days?

You would have to meet Mike to truly answer that question for yourself.  All I can tell you is that he is a sweet, charming young man.  His smile is infectious.  His laughter lights up a room.  He tells his story with honesty and raw emotion. He could easily be one on my sons and he amazes me. He makes me want to do al I can to make his dream come true....AND I happen to think that he would be another AMAZING spokesperson for people with diabetes.

You don't have to take my word for it but if you haven't met Mike Fisher, it would really help if you did because we really want to make this happen for him and for the diabetes community!

This is what I want you to do.  Go to the Ellen show and tell her why we need Mike on her show in November. Let her know that he can dance, has and amazing story and please, tell your story as well (you have 1500 characters).

The second thing that I want you to do is to share this post!! Spread the word! Let your friends read about Mike.  Beg them. Let them know that for a change we are not asking for money just help to make a dream come true and spread a little joy for a lot of people whose lives he touches. As I said at the beginning, Mike Fisher is a young man with a stroy that touches your heart and he is a great ambassador for people living with diabetes.

So let's put on our Bob the Builder hats and YES WE CAN get Mike on Ellen!!!  Share!
Tweet!
Facebook the story, the links!
Just don't do nothing and let's get Mike on Ellen this November!!!

Tuesday, May 22, 2012

Diabetes Goes to Grad

As I had mentioned at the beginning of last week, the May long weekend was especially important for my family this year.  It was the weekend of my oldest son's graduation ceremonies. As we now live about 10 hours apart from each other, there was a bit of travel involved to get us to the event but it was completely worth it. I was so proud of how handsome and poised he was.  He appeared to completely enjoy his day.  It was amazing for me to see him with all of his friends--now young adults, and remember so many of them as tiny, little children.
My graduate and his beautiful date

The day progressed wonderfully. Diabetes stayed in the background and the day belonged to my oldest son and his proud family. Diabetes would not stay quiet for too long however!

Because we had driven so far, we also took the opportunity to spend some time with dear friends in the area. My youngest son enjoyed traipsing through the woods and catching up with his best friend but all too soon the weekend was over.

We headed back to our hotel room and prepared to make the long trek home the next day.  As we got ourselves ready for bed one last time, my son said to me "By the way Mom, I am 2.4( 45)"  You have to be kidding? It was close to 2am. It had been a long, long week and I was exhausted. 2.4? So much for sleep.  We sat up and pretended we were awake while he ate some glucose tablets.

"Mom, there are some cookies here too. Do you think I can have them too?"

"Do you remember what Joe said? You will send your readings through the roof if you just keep eating."

"Mom...."

"Alright, give it a try."  I was way too tired to argue with any conviction.

Thankfully it did not take long for the low to come back up and we all could go to sleep.  We were up bright and early the next morning and on the road for home.  Part way into our 10 hour drive, I heard those words again..."Mom, I'm low. Have you got any glucose?" 

Crap! I knew I had some somewhere but where? I dug through my purse (it could double for a suitcase so digging is really an apt term!). There were two bottles in there when we left. What did I do with them? I had a small purse that I carried during the grad. Did I forget to take them out of there? I found two lollipops and tossed them to him, hoping it would be enough. He was quite happy and felt that they should be our new "low treatment".  Not a chance!

I realized afterwards that the glucose in my purse had been used the night before and were packed in a bag behind him.  Oh well, crisis averted...for now.

We safely made it home and Diabetes was quiet.  There have been a few more lows and a lot more activity. I know that there will be a lot more adjustments to be made in the coming weeks and a lot less sleep to be had, BUT we made it through graduation weekend and that is what counts!
Thanks Larry for being our photographer for this one :)

Sunday, May 20, 2012

Diabetes Hero


Our last prompt for Diabetes Blog Week is to blog about a "Diabetes Hero".  Again, there are so many of them out there.  Jeff Hitchcock remains a hero for all that he has done for children with diabetes and their parents. Without his website, I would not have met the many Parents of Diabetes who also remain at the top of my hero list. 

I have never really been one into the "hero" concept.  So many people struggle each day.  So many people do amazing things. They awe me.  They may make me proud to know them but what really is a hero? I headed off to Google once again to search for a definition. They defined a hero as "a man of distinguished courage or ability, admired for his brave deeds or noble qualities."

I began to think of my sons...first they were male so that allows them into the category but did they fit the rest of the definition? Are they courageous or do they have amazing abilities? Yes, they fit there too.

My youngest son has faced diabetes with courage every day since he was two years old.  We have had our battles but he rarely ever cried when injected. I never had to chase or bribe him to test him...until he was older.  He inserts his infusion sets with only the occasional bit of theatrics (that I am sure are well founded but I won't tell him that).  He has faced blood tests and blood squirting across the table from "gusher" sites.  He nobly sits through diabetes conferences despite not wanting to be there.  He rarely, if ever tells me that he hates diabetes. Its part of his life. He is quiet about it. He does not like to bring attention to himself or his diabetes but that is just him. He is my strong, silent son.  

My older son doesn't have diabetes but he has had to live with it in the house nonetheless. He has had the ability to watch out for his younger brother when in school and help teachers make diabetes related decisions.  He has gone to diabetes conferences as well and made the most of them, making friends and becoming a part of the events.  He has not grumbled much about the energy his mother puts into diabetes advocacy and knows that when he needs help on his own issues, I am there as well.  He is patient. He is kind. He is confident and outgoing. He treats his brother like anyone else.  He torments him when high.  He brings him juice when he is low. 

My boys have handled diabetes in our lives with as much poise and grace as can be expected.  They have not screamed or truly rebelled. They have made it a part of their lives, rolling with each new challenge and forging ahead. They are my Diabetes Heroes.

Saturday, May 19, 2012

Saturday Snapshots



The sadness in his face kills me even now
Testing anywhere you want to go!
My son thinks that this is a real bg reading!
Possibly the most terrifying pic of me ever but LOVE the people I am with!

Forced to attend a diabetes function but as long as there is a smart phone, he can listen to everyone's stories once again!

Joe S. has a new Olympic sport...everyone test together!!



Friday, May 18, 2012

What they should know...

What would I like people who don't have diabetes to know? Ah the list could be long!

I recently went to a diabetes event and there was much talk about the positive parts of diabetes, downplaying the bad and making the best of each day.

I agree with that to an extent. I will never tell my son he can't do something. I will always promote the best of life with diabetes to him. I try to expose him to people who are positive and doing great things. As with his brother, I remind him that he is smart and the sky is the limit.

This changes when I am dealing with people who have no understanding of diabetes or people who are in an arena of politics that I need to influence.  I want the outside world to understand that while people with diabetes are pilots and hockey players, that they are lawyers and nurses, they are teachers and mechanics BUT they have to take extra precautions.

I want people to know that these people who look so normal on the outside, work hard to maintain their health.  Each night they go to bed wondering if they will wake up.  This is not some abstract or unfounded fear, this is their reality. People do go low and if left undetected, these people can die. 

These people have to measure each morsel of food that enters their mouth and know its nutritional components.  They have to know how much insulin their body will require to properly use that insulin.  If they make a mistake in this math, they will have to pay the consequences.  They will experience blurred vision, head aches, and a poor attitude if they are high.  They will be shaky and not be able to think clearly if they are low.  They will appear drunk or aggressive. They will appear to be very different people from their normal relaxed attitudes.  These are the realities that they face each day.

They carry around a suitcase of supplies--glucometers, test strips, glucose, insulin pumps, syringes, CGMs, and more. They test their blood and inject themselves with insulin numerous times each day.  They stab so many holes themselves, that as Joe Solowiejczyk notes, its amazing that they are not human sprinklers with liquids squirting out all over their bodies! 

These amazing people with diabetes rarely complain.  They do things to their bodies each day that we never think of. They play God in trying to figure out what their body would normally do in each situation like when stressed, when active or when relaxing on the couch. 

They are asked to spend incredible amounts of money to keep themselves alive. Like those living with Alzheimer's, Parkinson's, and cancer, the medications and devices that they require each day to stay alive and healthy may or may not be covered by insurance.  The out of pocket costs can reach thousands of dollars each month.  The stresses are incredible.

So what do I want people without diabetes to know about those who live with it? These people with diabetes are REMARKABLE! Their pancreases have quit on them but they have not quit on life.  They work harder than you and I.  They have to think about things that they shouldn't just to get up each morning but they continue to fight each day.  Be amazed by them.  Be proud of them and most of all support them in every way you can!

Thursday, May 17, 2012

Fantasy Diabetes Device

What would my fantasy diabetes device be? We already have part of it. I love, and my son completely LOVES his Cozmo.  My dream would be to be able to keep all of its amazing technology...with one addition. A cattle prod. You know, an electric shock device.

Vibrations and alarms just do not cut it.  When they go off, my son obliges and turns them off without looking or attending to the issue at hand.  I have always thought that if he received an electric shock, he would be more likely to pay attention to what caused the shock. He might even be proactive and change a site before he was warned. He might put in insulin before the pump is gasping for more. He might even...wait for it....test before the pump tells him too!

Ah yes, a little electrical stimulation could work wonders for his diabetes care! His hair may end up a little curlier than it currently is.  He may develop a bit of a nervous twitch but I am sure it would all be worth it in the end.  Don't you??

Wednesday, May 16, 2012

One Thing to Improve


Today's prompt asks  us to come up with one thing that you could improve on...and maybe start today!

One thing? That is so hard to narrow down.  I think that there are a lot of things that I could improve on.

I could be a better advocate.  I could be dedicating more hours each day to the task and working harder to see more successes.

I could put even more hours into my website and blog.  I would keep things even more updated and spectacular than they are now.  Links would be fresh and new. Articles would be engaging and I would catch the attention of more advertisers allowing me the financial resources to fully devote myself to these first two shortfalls.

More realistically the biggest thing I that I think I need to improve on is my son's diabetes care.  I find it terribly difficult to balance between being on his case all of the time, monitoring, logging, trending, and tweaking versus allowing him the freedom to do his own thing and make his own mistakes.

I am trying to let him fall on his own more often.  I try to look at readings once a week and then calmly discuss them. I try not to completely freak when readings are not there that should be.  I make him count his own carbs most days and discuss his results compared to mine.

I still don't worry about him testing at night. That remains my job.  I still look for the best technology for him. His only interest in technology is getting an iPhone or the latest game for his Xbox--although he does appreciate a good meter!

When he makes mistakes, I take them to heart. I get upset because I feel that I have failed more than him.  I need to let that go.  Its hard. Its hard to watch our children stumble at any time. Perhaps we could have taught them better. Perhaps....

I have to learn to let go and then accept what happens and allow both of us to learn from it. It will come...one day.




Tuesday, May 15, 2012

One Great Thing


What is the one thing that I do really well when it comes to diabetes? I think it has to be my ability to be a Continuous Glucose Monitoring Mom during the night. We do not have a CGM.  We do not have a My Sentry or a D.A.D.  We simply have a sleep deprived Mom and some serious guardian angels who like to kick her butt.

For years I would set an alarm clock for 3am.  I would then wake at 2am and find my son was running a little high. I would correct and sleep for another two hours. 

I would go out at night, come home and test my son only to have him sit up in bed in a zombie like state with a blood glucose reading that barely registered on his meter. Somehow I just knew to test before I did anything else.

I can go to sleep, be sound a sleep and something will wake me. I will need to use the washroom. I will have a dream of my phone ringing. I will be sound asleep, dying to stay right where I am and "something" will make me get myself out of bed.  I will stumble to my son's room and be instantly alert when I realized that his blood glucose is low...and dropping.

I am sure that a CGM would say that I was fallable and it could do better, but I have heard that it makes mistakes too. So far, knock on wood, I have never slept through a low that caused a seizure.  My son has woken up every morning. He will ocassionally wake to his highs and has woken to one low in over 12 years.  Thankfully the Momma Monitor has only slept through the night a hand full of times. I may not get the readings right before bed. I may not bolus properly all of the time or gage the influence of activity exactly right but so far I have been able to protect my son at night, protect his body, and keep his A1c down to an acceptable range. I think that counts as "one great thing". 

Monday, May 14, 2012

Diabetes BFFs


I can't believe it but once again I am going to take part in Diabetes Blog Week.  After a month of blogging, this week should be a piece of cake but doesn't this week also happen to fall on the same week that my oldest son graduates from high school? Karen, what are you doing to me? Despite that fact, I am going to do my very best to keep up and join in because I truly LOVE Diabetes Blog Week!!

Day one's challenge is to share our favorite, and hopefully new to others, bloggers.  That is a tough one! I admittedly do not constantly follow a lot of people. I watch for their posts to show up on twitter and when they catch my eye I read. 

Having had diabetes as an unwanted house guest for over 12 years, dealing with a toddler, a preteen and now a teen with diabetes, my favorite blogs come from adults. I want to hear from those who have been there and somehow lived through it. 

I still enjoy the comic relief and raw prose of people like Reyna at Beta Buddies.  I completely admire the courage of Meri at Our Diabetic Life. Blogs such as The Corner Booth have given me a huge insight to the world in which my son lives.  I will be sad to no longer see Mike's updates there but look forward to reading more from him in his new role with Diabetes Mine

Another young adult that I enjoy following is Lauren from The LD.  Her struggles and her youth is both refreshing and informative. I often want to reach out, give her a hug and take over her care for a bit to give her a break. She continues to amaze me.

There are so many great blogs out there. These are just a few of my favorites and I look forward to finding many more as others share during the first day of "Diabetes Blog Week"!

Sunday, May 13, 2012

Thank you to the Mothers!

Happy Mothers Day to all of the amazing Mothers out there! Happy Mothers Day to all of the other Momma Bears who work so hard to protect their children.  Happy Mothers Day to my Mom.

I have been blessed to have been surrounded by many amazing mothers throughout my lifetime.  Before I was born, a woman chose to be a mother to my mom.  She took in an orphaned, rebellious young teen and made her her daughter. She extended her family to include my mother and therefore gave me the most amazing family of grandparents, aunts, uncles and cousins that I could have asked for.  We have laughed, grumbled, cried and loved together. They have helped to shape the woman that I have become and I am so blessed to call them family.

I was lucky to have two grandmothers.  This other woman had a son who was to be my father. She was strong and beautiful.  She was loving and taught me so many things.  These two women were opposite in so many ways but similar in others.  They both loved me.  They both taught me about love, commitment to family and showed me the strength of a mother's love.

Then there is my mom...she is a complex woman.  She is caring and strong with a river of compassion and love that runs deeply through everything she does and all that she is.  She was not physically there when my sons were born.  She was not tin the same province when my youngest son was diagnosed with diabetes but she was there with support through every event in my life. She didn't know any more about diabetes than I did when my son was diagnosed but she was willing to learn.  When my youngest wanted to stay with her for a week, she was prepared to do all it took to keep him as safe as he was when he was with me.  She learned about testing, carb counts, weighing food, boluses and set her alarm to test him through the night. My son got to experience life as a normal child would-- spending a week away with his grandparents. It was no big deal...but it was a huge deal for me.

I am blessed that my mom is still here. She will be joining us as we celebrate my oldest son's graduation from high school next week. She is still there when times are good or frustrating and remains my biggest cheering section for all things diabetes and more.  She pushes me to be my best and helps me to get there. She believes in me like no one else...but I guess that's what mothers do.

Being a mother is a challenge.  Finding the balance between guiding, pushing, and standing back is never easy.  A mother's love is always there no matter what.  As many have said, never come between a Momma Bear and her cub.  I know I have lived that motto with my own children and so have many others.

I have been truly blessed to have been surrounded by so many amazing mothers.  Last year I told you of just a few, the amazing Mothers of children with diabetes who have changed my world, inspired, encouraged me, and been there for me through diabetes issues and more. 

There is the mother who has become my very best friend, standing beside me, listening to me--not always understanding but always there to support me.  

My "other" mother who took me into her family, loved me and made me one of her own.  She has been there to help through the down times and celebrate the up times. 

I have been blessed (I know I have said this a lot in this post but its true!). There have been so many amazing women have come into my life--so many of them were mothers themselves.  All of them sharing themselves with me.  All of them to be celebrated and thanked for helping to make me the person I am...hopefully a mother that makes my own boys proud!

Happy Mothers Day to all of you!!! And thank you for being you! xoxo

Friday, May 11, 2012

Your pump and Airport Security...what you need to know

In the news recently was a story about a 16 year old young girl who was returning from a conference.  She happened to have diabetes and was wearing an insulin pump.  She had a letter from her doctor stating that she could not go through the scanners but would require a body search.  TSA screeners in Salt Lake City felt that they knew better than this young lady or her doctor and required her to go through a full-body scanner.

She has since claimed that this act resulted in the malfunctioning of her $10,000 insulin pump.  She is not happy. Her parents are not happy and many in the diabetes community are left asking, "What are we supposed to do?" 

For me, we have done both the patdown and gone through a screener.  Until recently I have told the security personnel that my son is wearing an insulin pump and we would prefer he be patted down.  At one point they argued with me stating that as pumpers themselves, they constantly exposed themselves and their pumps to the scanner machines with absolutely no adverse effects. We decided to finally give it a try. Of course my son had some other item on his body that set off the alarm and still had to be pat down but his pump did not see any adverse damage. 

So the question remained, for those of us who will be traveling by air and having to go through airport security what do we do? According to an Animas statement released in response to the Salt Lake City incident (May 2012 Standby Statement)  "...we recommend that our patients avoid going through X-ray machines when traveling, as the machines may potentially damage the pump's software and therefore affect insulin delivery.  This includes the newest airport screening tool, Advanced Imaging Technology (AIT) or full body scanner."  They further advise pumpers to alert TSA employees that they are insulin pump users and should NOT undergo an X-ray machine.  Animas will also provide a letter to its customers that can be shared with airport personnel should they be questioned or asked to be scanned. If Animas pumpers have any further concerns, they can visit www.animas.com or call 877-767-7373.

I wondered why there was a problem, so I asked! I was curious if there were studies on how this decision was made. No studies could be found but it would appear that engineers feel that each time an electrical component goes through an x-ray machine, it fatigues some of the electrical components.  This made sense. If we get X-rays for our teeth, for the breathing issues in our lungs, after the skiing accident on our leg, and then on the six plane trips we took that year...well that's a lot of potential for fatigue!

 According to Medtronic, "You can continue to wear your insulin pump or continuous glucose monitor while going through common security systems such as an airport metal detector as it will not harm the device or trigger an alarm.  Do not send the devices through the X-ray machines.  You also need to remove your insulin pump and CGM (sensor and transmitter) while going through an airport body scanner or ask for a pat-down screening."   

I was still confused though...what is the difference between X-ray, full body scanners and metal detectors?  Google to the rescue! While I did not bother to get into the technical differences, we know that the X-ray machine is the thing that scans our purses, laptops and jackets.  How do we tell the difference between a metal detector and a body scanner? It turns out that a metal detector is the traditional screener that we have all come to love to hate.
The full body scanners are the new fangled gadgets that some airports have recently begun to implement. They look more like this...
and for some reason make me think of a woman getting ready for a mammogram!

What does all of this mean? The main message I received is to go with a pat down ideally but absolutely, 100% without a doubt do NOT put your pump on the belt with your laptop, purse or jacket to go through the X-ray machine. Do not put your pump or CGM through a body scanner but if you want to walk through a regular traditional metal scanner...well make sure that you don't have the pump clip still attached because you know that is going to set it off!



Thursday, May 10, 2012

Return of the Zombie Mom

Last night was one of those nights that Murphy's Law of Diabetes fated to happen. I have been running around mentally and physically lately with a lot on my plate.  There are occasions coming up and never enough hours in a day to get caught up on everything.

Yesterday I was feeling great. I had my mom's Mothers Day gift all wrapped.  I was working on sorting out my youngest son's cell phone.  I had picked up a few of the required items for my oldest son's graduation including his card. My youngest had the new running shoes he had been bothering me about. I was happening. I finally called it a night well after 11:30. That is pretty late for me these days but I felt great! You know where this is headed right?

My biological alarm clock is back on track and at 2am I woke up.  I stumbled to my son's room, tested his blood and waited for the result. It was 5.6 (100).  What to do? What to do? He could go up.  He could go down. I didn't want to treat or reduce any insulin just in case but...

Back to bed I went. I would be up in another hour.  Once again, my personal alarm did not fail me and I crawled back out of my bed.  Good call Mama Pancreas...a lousy 4.6 (83).  This was not a good trend. I grabbed some orange juice (remember he hates the glucose tab hangover) and gave him the straw to drink. I curled up on the couch with my book and attempted to turn the words in front of me into meaningful sentence. 

Thankfully it was soon time to retest. I turned off lights and headed back to my son's room. All would be fine. Wrong! He was now 4.4 (79).  Insert profanity here alternated with the "thank you Lord for waking me up!" prayer.  Okay, more juice, more reading, more waking up. 

By about 4:30 all was good for me to head back to bed.  So much for sleep. I knew I would not get to go back to bed the next morning and I didn't. I have simply spent the day as a walking zombie but what can you expect when you live with diabetes? Only the unexpected of course!

Tuesday, May 8, 2012

Pump it Forward?

My oldest son is getting ready to graduate high school and establish what he wants to be when he grows up.  Besides having my own crisis that my baby could be 18 already, this has also left me wondering when I will figure out what I want to be when I grow up. I have a lot of hats that I wear and yet I often am left feeling that I am not doing enough.

In one of my many soul searching moments, I began to reread "What Color is Your Parachute?"  I was hoping it would provide me with some insight for myself or my son but instead I found a phrase that has stuck with me ever since.  "Each one Teach one."  I thought it was brilliant. I could see it in so many applications. It would not help my son decide what to do in September but what a difference it could make in the world.  It reminded me of the saying "Give a man a fish and he will have food for a meal. Teach a man to fish and he will eat for a lifetime."

This phrase will not leave my head. Could it be applied to diabetes? Isn't it already happening though? We often learn from each other. We rely on the "YMMV" rule but we get general guidance on how to make an insulin regimen work better, which pump has features we would love, what meter works the best and how a certain insulin works in a specific circumstance.

I wondered if this could further be applied to help with new pump programs. Would governments be more willing to fund programs if they didn't have to solely rely on the medical community to get people ready to pump or to follow up with them? Could we provide one to teach one? Whether they would or would not accept this idea, I quickly realized (and verified with a friend) that the medical liabilities would create far too much fear to even begin to think about this ever happening in the real world.

The concept of sharing information, education, and experience still stuck with me.  Each one Teach one.  It is so simple and yet so powerful. It could work with the diabetes boot camp I have written about many times. It was stuck with me to the point that I wondered if there was a website attached to the phrase.  Sadly for me there was. I am sure it does really great things--how could they not with such a great name?

I was not completely discouraged. I still was (am) obsessed with the concept.  As my train of thought continued to wander, I was led to the AccuChek Share to Care contest.  Sharing, teaching...paying it forward.  That was what it was all about but I was still stuck. How do you pay it forward on a larger scale? How could you "Pump it Forward"? I loved that phrase too. It was almost as good Each on Teach one.  This time I found out that it wasn't a website. It was mine for the taking. I could take that name and use it!

Use it for what? I have no idea! What does "Pump it Forward" mean to you? What would you expect to see on a website like this? Would it offer a service? I understand that there are already many great mentoring sites out there so what would be different with "Pump it Forward"?

I haven't finished reading "What Color is Your Parachute?" Perhaps I will find what I am looking for there...if you don't come up with a better idea first!

Monday, May 7, 2012

And the winners are.....

Today is the big day!!!

First let me thank Corinne who has worked with my on behalf of AccuCheck.  She was very patient as she answered emails and tried to keep in contact with me at a very difficult time in my personal life.  She waited for me to return from family obligations only to have to wait again for me to finish with the Health Activists Writers' Challenge before we could get things on the go. 

Finally we got there however and on May 1st we got this contest off the ground! Three cards were to go to three people to say thank-you.  Now that was a daunting task!  First, as I mentioned was to come up with someone for me to "pay it forward" to thank with a $200 donation.  As many of you mentioned in your own testimonies of support, it had to go back to Children with Diabetes.  They have a Scholars Foundation that helps out with both university scholarships and getting families to conferences.  I sent the first $200 Visa card to Mary Podjasek on Friday!

There were a lot of little ballots to cut and draw from!
The second card asked for reader participation.  I wanted to hear from you, the readers. I wanted to see you share what we said, comment, and get the word out about Diabetes Advocacy. Wow!!! Did you ever! Some of you truly took the bull by the horns and my archaic system of watching and counting posts took up a large amount of time each day....and I LOVED it!!! I placed all of your names on a spread sheet  and noted how many times we heard from you from May 1 until the 6th (one ballot for every time you mentioned us or joined a conversation).  Your names were then transferred to a second sheet of ballots.  Those ballots were be drawn from and the winner is.......Jen Salzman!!

I had Larry draw the winner to guarentee impartiality.

The third card asked you who had supported you. There were some great responses.  I told you that my son would be judging.  I reminded him of this today and told him some of the responses that we had. I also told him about the person who wanted to write an essay entitled "How Liam changed my life".  He thought that one was a sure winner and was ready to hand her the money without a second thought! Unfortunately only the title was submitted and I reminded him that we could not operate our first contest with such obvious overtones of bribery so he had to look at the rest of the submissions and decide. 

Personally I was touched by the submissions.  More than one of you stated how much I had helped you through.  You honor me and I am so proud to call so many of you friends.   I have enjoyed conversations, meals and glasses of wine with many of you and look forward to many more!

Needless to say, making a final decision was difficult but the winner of the third gift card is the person who wrote....
 I've been thinking a ton about this since you asked the community to share. My first thought is all the folks who were such an incredible, tremendous support to us when my daughter transitioned from shots to her pump, in 2004. Yup, we are coming up 10 years of D very soon. You were there, ♥ Barb ♥, as were a ton of people from the online d community, especially the CWD parent list. Our Cozmo pump rep was also a super supportive person as was our pharmacist and our infusion set rep. The staff at CWD who run the best d conferences bar none, have been a great resource. But I think the most supportive person is actually my "d" kid - my most awesome daughter, Kate. She is my rock and my inspiration. As we all do, over the years, we have had terrible "d" days and nights, and then miraculous days where "d" was simply a shadow, wwwaaaaayyyyy in the background (those are the best, yes?) But no matter what the day, what the issue, she is there, doing what she needs to do, and...doing it exceptionally well and with little fan fair. She may not be the most public person about her "D-ness" but she is quietly the person who will be the first person to lend a hand and a word of encouragement to her peers. She accepts it all with grace and courage. When I feel *my* grace has slipped, and my courage is rattled, there she is, telling me "its okay Mom, I got this."
 Kelli Doyle!

Thank you again to everyone who participated. I would love to have been able to give a card to each one of you as you have all enriched our lives for being apart of our little corner of the Diabetes Online Community.

Thank you again....And congratulations!!!

Kelli and Jen, please contact me privately with your mailing address (within the next 72 hours) so that I can get these cards out into the mail to you.

Sunday, May 6, 2012

WARNING: When the Fear takes hold

For some reason lately my internal alarm clock is off. I have been waking at 5am.  That is about two hours after the latest time that I would normally wake up. I am not sure what is going on. The first day it happened, I panicked.  The second day it happened, I panicked and then remembered that it was a weekend and the last test would have been done by son less than four hours ago.  The third day was today and I will have to fix this trend fast!

When I woke this morning, I found my son's bg level was the dreaded 5 (90).  You know? That perfect number that you don't know which way it will go and you quickly drive yourself insane wondering? Normally I would have stayed awake for a bit to retest, check and see what was going on. Today I was tired. I was worn out and I literally prayed for the best as I headed back to bed.

I woke up a few hours later with the intention of checking to see where his bg levels were but I fell back to sleep. When I finally woke up again, I lay there heavily buried in guilt.  The what ifs began....

What if he did drop lower while I selfishly slept?
What if he seized while I dreamed  peaceful walks?
What if he didn't wake up when I went to check on him?
What if he had brain damage?
What if my sweet, quirky young son was hurt because of my selfish desire to rest a little longer?
This would ruin my oldest son's graduation celebrations in a few weeks.
I would never celebrate a birthday again because I had done this. It would be all my fault.

Plagued by all of the horrific sceneiros racing through my mind, I quickly headed across to his room.  As I entered, he stretched and yawned. He held out his hand for me to test but pretended to remain asleep. I lanced. Not enough blood. I lanced again. I squeezed. I waited. He was 6.5 (115ish).  He was fine. There was no coma, no brain damage--just a perfectly fine teen desperate to sleep until his mother peels his body off of his mattress.

I took a cleansing breath and headed off to the couch to sit and regroup for a bit.  This disease can drive you crazy. I thought I was doing well at living in the now.  Not letting it freak me out very often any more. I thought I was rolling with the punches pretty well. I guess we all have our days.  Today was mine. Tomorrow will be better.