Diabetes Word Cloud

Its the last day of the Health Activist Writer's Month Challenge and I made it!!! I actually posted, on time, all 30 posts!!! Tomorrow I am supposed to do a recap but I am afraid that will have to be late.  Tomorrow I have a big surprise for readers that is way more important than a recap of my ramblings.

For the last day, the task was to create a word cloud for our health condition.  So here it is...I cheated a little. I didn't create a cloud with words, I put words on a cloud and because I can see a few rainbows from this horrible disease, well I added a rainbow too!

A Teen's view on site changes

We are winding down and coming to one of the last posts for the Health Activist Writer's Month Challenge.  Today's is exceptionally tricky...Tell a story in only six sentences!! Wow! I like to ramble.  This will be a challenge that will require a LOT of editing I am sure but here it goes....

You were high. Did you do a site change?
I was going to but I got it down with corrections.
You needed a site change.
You would do a site change.  Personally, I don't do a change until I absolutely have to and since I came down, I really didn't have to!

"Geesh!"

Our First Terrifying Low

Today's challenge is to write about a first. There are so many firsts in diabetes...the first time you inject your child.  The first time you test their blood.  The first time you make a dosing adjustment.  The first time you let them go to a friend's house without you.  The first time they have ketones. The first time they go low...

We were not allowed to leave the hospital until my son's blood glucose level went low at least once.  It was a safe place for this to happen. He was two. He had no way of telling us how he felt. I was terrified as to how either of us would react when he went home.  Eventually we did have to go home however and trying to regain some sort of control of our lives was not easy.

I tested.  I injected. I watched. I lived by the clock.  I counted each exchange.  Food was restricted and fights with a toddler were many. Life was not good but it got worse...

The first time that I remember my son going low at home definitely puts me in the "World's Worst Mom" category.  We had not been home from the hospital for long. It was early spring.  The snow had finally gone.  The boys and I were enjoying the chance to be outside.  They were playing and I was working on my yard. 

As I worked, my youngest son began to get fussy.  He was demanding. He wanted to go inside.  He was whining and basically being an annoying two year old who desperately needed to go for a nap.  I told him to give me just a few minutes. I would be done soon and we could go inside.

I never paid him any more attention. I continued doing what I was doing. Diabetes never entered my mind. It lived on the fringes.  Memories of the hospital were still fresh.  Living by the clock was our new way of life but "other" fears were not yet as strongly entrenched.

I tended to my garden, moving rocks and dirt.  My son was quiet so I assumed that he had gone back to playing with his trucks and amusing himself until I was done.  I finally turned around and looked for him.  My heart stopped.

My son was laying lifeless on the ground.  What had happened? What had I done? Instantly, I had him in my arms and was screaming at my older son, "Open the door for me now!!!"

I raced through the house and put my son on my bed. I ran to the washroom to get a clean face cloth to wash his hands and had my older son get me the glucometer. I shook as I tested his blood. He was low. How low? I don't remember. I just know that I brought juice to his lips and prayed he would drink.  He did!

Within a minute he was awake and wondering what my problem was.  He wanted to go and play.  I bribed him with watching his favorite show on TV instead.  I knew he had to retested. His blood glucose level still had to go up some more. 

I watched him as he sat, content and oblivious to the chaos that had just ensued.  I continued to shake.  What ifs ran through my mind.  I would never ignore him like that again. I couldn't. Diabetes was not interested in my timetable, its demands were to be met NOW! 

I can't say that that was the last time he went low but I can say that it was the last time I found him asleep in the dirt.  There were many other "firsts" in our lives.  Some were bitter sweet and some remain terrifying but such is life with diabetes.

Diabetes highs and lows

5 Challenges & 5 Small VictoriesMake a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

 We are winding down the month and coming to the last few posts for the Health Activist Writer's Month Challenge but the challenges are still just as thought provoking.

The five most difficult parts of living with diabetes (in no particular order)

1.  Sleeping.  Every night when I go to bed, I wake and wonder, "Should I test? Is he low? Is he high? Is it okay for me to sleep? Is he alive? Did I sleep through something that I shouldn't? Will he ever wake on his own when he is low?"  This happens if he is in the next room or across the province.

2.  Letting go.  My oldest son slowly (and sometimes more abruptly) pushed me away as he spread his own wings and learned to sink or swim on his own.  For my son with diabetes, spreading his wings means more than just issues of handling drugs, drinking and other peer pressures.  It means being able to handle his own health care. Its testing, avoiding lows, dealing with highs, bolusing food and being prepared for emergency site changes and low insulin cartridges.

3.  Trading a diaper bag for a diabetes bag.  I look at women with small purses and wonder how in the world they do it? Each time I have to fly without my son, my purse becomes a few pounds lighter as I begin to remove things like spare insulin, syringes, lancing devices, meters, glucagon, glucose gel, glucose tabs, alcohol wipes and more. For small trips, we must remember all of those things plus a few more...just in case!

4.  Living life on a roller coaster.  Never knowing if he will be high or low or living through the days when he is both.  The uncertainty of diabetes can mess with vacations, outings and just your daily routine.

5.  Knowing it won't get better. The absolute worst part for me has been knowing that no matter how hard I work, no matter what I teach my son, he will not get better for all of this care. He will avoid complications. He will live a normal life but there will be no respite.  He will always need to test. He will always need to count carbs.  He will always need to bolus.  He will always need to be on guard.  He will always need to look at how his body reacts to his actions. It never ends. There is no break.

The five things that keep me going?

1. Amazing friends.  The support network that diabetes has brought into our lives is second to none. I do not know what I would do without my amazing friends. We don't see each other every day.  We don't talk every week but when you are in need---because of diabetes or just life, they are there for you 100%.  They have become family in their own right.

2.  Technology.  The changes that have happened over the years have made our lives better.  We get excited when we see new meters on the market to try out.  We enjoy seeing what technology the latest pump will make use of.  These little victories in our diabetes care brighten a few moments in our lives.

3.  Emails from strangers.  When I feel like I have done nothing and I am helping no one, I get an email or a phone call out of nowhere thanking me for all I have done.  They (you) lift my spirits and empower me to keep going.

4.  Victories.  Getting the federal government to change the Disability Tax Credit to make it more fair.  Advocating more and more provincial governments to cover insulin pump therapy.  Teaching schools and personnel what diabetes really is and how to help our children.

5.  Bringing people together.  Going to events, especially ones that I have help organized or am a part of, and seeing people with diabetes come together.  During these times we talk to old friends, we work together to help new ones. I walk a way with a sense of purpose and pride. I know I can go on to fight another day.

My Tag Line

Once again, today's challenge is something that I have done years ago so I guess I get a bit of a break...

Give yourself, your blog, your condition, or some aspect of your health a tagline. Make sure it’s catchy!

I don't know if its catchy, but the Diabetes Advocacy tagline reads...

Diabetes Advocacy...Dedicated to Advocacy, Education and Awareness

Orginially

Diabetes Advocacy...Advocacy for One

The original focus of the site was for parents of children with Type 1 diabetes in Canada.  Over the years, more adults and people with other types of diabetes have used the site so the change was made to welcome everyone who needed the information that I was able to provide.

A new door opened

She had been alone for well over a year now.  Her family was on the other side of the country.  Friends were great but she still felt terribly alone. No one truly knew what her life was now like.  She had a toddler with Type 1 diabetes.

Before March of the previous year, she didn't even know that there were different "types" of diabetes.  She didn't know that diabetes could kill you let alone almost kill one of her children.  She was no longer so innocent. She was still scared and she felt terribly alone.

Diabetes had caused her to make many changes in her life.  She had bought a cell phone--just in case.  The family had bought a more reliable car for the many trips back and forth to appointments.  Meals were now very structured and their lives were on a timetable--something she had avoided before. 

She had done other new things.  She had braved her fear of the phone and called a total stranger for support.  The woman had been amazing. Her own daughter was a year younger than this woman's son and diagnosed the month before.  They were both struggling along the same path. Despite living in different towns, over the years they would develop an amazing bond. 

The other huge thing that she did was join the world of the Internet.  Her mother had been pestering her.  "Get online! It would be so much easier to talk to you.  We can use MSN.  It will be great. Just go to your phone company and have them  set you up." Finally she did just that.

The family computer had been used for Reader Rabbit games but now it was going to be Mommy's toy.  She truly had no idea as to what she was getting herself into but she did as her mother suggested.  She got an email account. She opened a hotmail account to talk to her mother and sister.  She then began to search.  There had to be other people out there like her.  There had to be other parents of children with diabetes but how would she find them?

After a day of searching and stumbling, she was sure that she would never find anyone else.  She knew enough to know that people were diagnosed with diabetes all the time but finding someone who understood her life as it was now? She was giving up hope. Perhaps the search was futile.

Ironically she finally decided to search for something very simple "parents of children with diabetes."  She found an email list.  It said that there was high volume of mail so she used her new hotmail account and joined the list. She had no idea what "high volume" meant but she was taking no chances of messing up her normal email account. 

She wasted no time. She was at her wits end trying to dealing with diabetes and her now three year old son.  She immediately sent a message to the group..."how do you get a 3 year old to eat? He throws up. He refuses to eat.  I just cannot get him to eat and yet he has to have his insulin.  He cries. I cry.  What can I do?"

Within minutes she had an answer.  She cried.  It had been so simple...to get advice and to solve the problem. She had known the answer all along but for some reason when a woman named Sharon and a woman named Vikki came back with the answer it made sense where it never had before. Suddenly she was not alone.

She now had a community to learn from.  There were hundreds of people who had been there and done that.  There were people who were at the same stage as her.  There were people who had been doing this for years.  There were people to help her along and there were people to give her a shove when she needed it. 

She had family.  She had friends but suddenly at the end of her computer was a new world.  A world that contained another family.  A world that held people who truly would become her friends for life.  They changed her life.  They supported her and they helped her grow beyond anything she ever imagined.

My Mascot

Today's Health Activist Writer's Challenge was probably one of the easiest for me yet because I have already done it! They asked that you create a mascot for your disease or yourself. 

Years ago, (over ten years now!) when I first decided to create www.diabetesadvocacy.com, I wanted a logo that really fit me.  It also had to fit diabetes.  I decided that the Phoenix was perfect.  As I recently mentioned in a Diabetes Mine article, the Phoenix is a mythical bird.  Its beauty is unsurpassed  but it is also a bird that has crashed and burned leaving it unrecognizable until it rises again and shows its full beauty. 

This fit perfectly with diabetes (and in some respects my own life).  You are sailing through life thinking that things are pretty good.  Diabetes comes in and destroys all that you know.  You feel that your world has been shaken to the core.  Everything around you looks like rubble and ash.  Overtime, you learn to cope.  You learn an empathy that is greater than you ever experienced before.  You begin to rise up as a stronger and more beautiful person than you knew was possible.

You become the phoenix and nothing can stop you. You know that you will always rise up and overcome whatever is thrown in your way.

George, What was your temporary basal set at?

 Wow, WEGO challenge day 23 and I am still going!!! I can't believe it! Today's challenge is a free day which is perfectly timed.

This weekend Larry and I went to a concert.  Terri Clark and George Canyon were in town and we managed to get tickets at the last minute. I have been a George Canyon fan for years.  When I first heard the song "Somebody Wrote Love", I was hooked.  Larry thinks Terri Clark has a great voice and isn't too hard on the eyes either so we knew that the night would be great.  We were not disappointed.

A number of years ago, before George Canyon began touring a lot, my mom watched him on a talk show where he showed off his insulin pump.  She called me instantly and said "Guess what? George Canyon has diabetes and he wears a pump!" As I have said before, I am not sure which impressed me more, the fact that my mom called because he had diabetes or the fact that she recognized the importance of his pump!

I first saw George Canyon at FFL in Florida the same year I was honored with the Jeff Hitchcock award.  He sang after I received my award and spoke of the importance of bringing his children to such an event.  I later saw him perform for some of the CWD FFL Canada conferences. His interaction with the young children dancing to his music was wonderful to watch.

A couple of years ago, he was working on a project of some sort for the JDRF I believe. He was looking for children with Type 1 diabetes to interview and photograph.  A good friend of mine from Animas asked me if my son would be interested in doing it. I volunteered him instantly.  It was no big deal to my son (very little impresses him) but he does note that he still has a personally signed George Canyon picture in his bedroom.

I have never been big on celebrities and diabetes. I do not get the Nick Jonas obsession. I can sort of see the fascination with Crystal Bowersox as she has publicly improved her diabetes care so dramatically that I do find her inspirational.  I have also never personally been overly interested in the stories of people diagnosed in their teen years.  I feel for anyone diagnosed with diabetes and truly love some of these people diagnosed at an older age but my son was a toddler. These are the people that I like to talk to so that I can better learn how to help my son through his life.

My other issue with celebrities is that I do not personally see enough of them working in areas that are important to me.  Realistically though, they have an impact in other areas that I cannot touch. I have heard numerous stories of George Canyon's conversations with kids that have made them more willing to try a pump.  That is amazing.  That is the importance of celebrity status to me.

Celebrity or not, when George Canyon steps on stage, the diabetes momma in me kicks into high gear! I experienced the exact same thing the very first time I say him in an adult concert.  This time was no different. 

As he was standing there I wondered, "What was his reading before he got on stage? How does he compensate for the highs that adrenaline will cause but balance that with the fact that I know he is very active in his stage performance? He must be running some sort of temporary basal.  I don't see any tubing hanging out. Is his pump on inside his jacket? It must be on the other side because if he had it on the side the guitar was on, what if he hit it and pressed a few buttons? Would we hear it if his pump alarmed while on stage? He must have it set to vibrate.  Does he have glucose nearby?" And so my internal monologue continues.

Luckily those around me simply get to enjoy his lively banter and amazing music.  At one point in the show he stepped off stage to showcase his amazing fiddle player.  As he did this, I leaned over to Larry and said, "I bet he is testing."  He was actually moving to a stage further back in the audience.  He played on this second stage allowing for those at the back of the room to have a better view of his performance.  He then made his way back to the front.  This time he took a little longer to get on stage. He could have still been shaking hands with fans but the diabetes momma in me said, no, he was testing.  His re-emergence on the stage told me that he was in range and good to play some more.

The next day I wondered if I was alone in my insanity.  I honestly become Diabetes Momma to anyone, any age who has diabetes and has the misfortune to come near me. I quietly worry. I wonder what their rates are like. I wonder if they are having any problems.  Can I help them? How can their lives be made easier. Are they okay? Have they tested lately?

Yes, I don't get out often and maybe that is a good thing but the moral of my story...Canada has some amazing celebrities out there.  We have some incredible people like Teri Clarke and George Canyon who give back to their communities and entertain us while doing so.  We are blessed! And I remain equally as blessed to have been able to meet, speak with and take in the talent of some of these wonderful people.

Things to Remember!

Today's challenge is things that we forget. Hopefully my post-it notes are things that we never forget...

Madlibs

As a warning...today's WEGO challenge makes NO sense to me.  I was asked to go to a site, input a bunch of random adjectives, verbs and nouns....this is the mess it created!

frightening pump's frightening pump
      I lecture my quads and all the test-strips laughs infusion-set;
  I clean my conferences and all is bandage again.
  (I fix I bleed you up inside my internet.)

    The outsides go danceing out in blood-soaked and joyful,
  And painful theatre washs in:
  I walk my needle and all the glucometer listens son.

    I learned that you tested me into mother
  And inject me fearless, changeed me quite hopeful.
  (I fix I bleed you up inside my internet.)

    sheets lances from the insulin, pillowcase's diabetess run:
  jump dog and home's friends:
  I walk my needle and all the glucometer listens son.

    I screamed you'd cry the way you grumble,
  But I talk strong and I sneeze your doctor.
  (I fix I bleed you up inside my internet.)

    I should have singed a hospital instead;
  At least when flowers scrubs they wash back again.
  I walk my needle and all the glucometer listens son.

  (I fix I bleed you up inside my internet.)

    - Barb & Sylvia'>http://www.languageisavirus.com/madlibs/sylvia-plath-mad-girls-love-song.html">Sylvia Plath        

Create Your Own Madlib on LanguageIsAVirus.com

Chocolate CURES diabetes!

Do you remember the chocolate bar that my son brought home before Easter holidays? The one that he was not allowed to eat?  Today we found out that this chocolate bar is not really a bar with almonds. Its a bar with special chunks that cure diabetes!

Seriously!! These small little particles that look like nuts are actually small encapsulated cells.  The coating allows them to be dissolved in the stomach and  release insulin.  Instead of being destroyed, these little guys are absorbed into the blood stream! The larger "nut" chunks go to work in the pancreas creating long term benefits.

These larger chunks are actually specially designed beta cells. They move through the body and head back to the defunct pancreas.  These amazing chunks then work with the pancreas and regenerate themselves.  After approximately a week of chocolate bars for breakfast, lunch and supper, the person with diabetes will notice substantial changes in their body and their insulin needs.

First, they will not require any insulin to cover the bars because the small particles are supplying them with just the right amount of basal and bolus insulin.  Second, they will soon not require any insulin at all because their body will quickly begin to produce its own insulin based on the regenerating beta cells.

After years of people saying "sweets cause diabetes" and parents of children with type 1 rolling their eyes and explaining how wrong they are, we are finally vindicated.  We can now say...Chocolate bars? Yes I feed them to my child with diabetes multiple times per day.  Didn't you know? They CURE diabetes!

Oh the joy! No more needles, no more pumps, no more night time tests.  Now its just chocolate and then CURED! Its time for the "we used to live with diabetes" get togethers.  Ah what a long road but it feels so wonderful to finally have success...a CURE for diabetes!

No I have not completely lost my marbles.  While a do remain a few short of a complete set, the WEGO writers challenge for today was create a miracle cure.  Sadly, there is no miracle cure. I wish a cure was a simple and giving someone a chocolate bar three times per day. In the meantime we will keep working towards good health and funding research that may one day lead us to that goal.

Five people I would have to dinner...

Another day, another Wego Health Activist Writer's Challenge! Today's question is to come up with five people that you would love to have dinner with. Once again I have been challenged to really think.  I am very blessed to have been able to have dinner, or lunch, or breakfast with many amazing people in the diabetes world so who would I want to sit down with now?

The first person I would want to join me would be Frederick Banting.  I would be very curious to know how he felt to have changed the lives of so many people.  I would be curious to know what he thought of the fact that research had not progressed as quickly as he had anticipated and ask him what he would do differently today. 

Person number two would be the person behind the Cozmo insulin pump.  I am sure that there was more than more person involved in the creation of this device but for this meal, they would all be rolled into one being.  I would thank them for the most amazing insulin pump ever. I would beg them to take their knowledge and bring it to one of the remaining insulin pump manufacturers to reproduce. They would be told that they have spoiled us for any other pump and we desperately want to maintain their technology in our diabetes life.

My third guest would be Betty Fox.  I know, she had nothing to do with diabetes but she was one of the most amazing parents of the last 100 years.  Her strength in the face of adversity is something I admire.  She raised a son who faced death and when asked "why you?", he is said to have responded "why not me?" She took his legacy and maintained something that is still very much alive today. I would love to know how she did it. How did she brave through her son's illness and death?  How did she rise up to go on with such poise and dedication right up until her own death? How did she create this amazing family that continues to keep giving (her husband has picked up where she and their son left off).

I would also invite Martin Luther King Jr.  I would be interested in learning from a person who could empower people and create such amazing change. How he would deal with modern day governments and create equity for people living with diabetes would be of interest to me.

The final person I would want at the table with me is my friend Kim.  Kim is an amazing mother with a son close to the age of my youngest son who also lives with diabetes. I am blessed to have a lot of amazing mom friends in the diabetes community but I think I would need Kim at this dinner for one reason--she is so thoughtful and full of all of the right questions.  She is a wonderful woman that I know would come up with all of the questions that I missed.  She would be able to speak on behalf of other parents where I missed. Between us, we would get answers and thoughts on the tough questions.

As difficult of a task as I thought this was at the beginning, I can truly imagine sitting at a table with this amazing group. I hope dinner began early however, because I can well imagine conversations stretching late into the evening but the wealth of knowledge that I would take away from it would be immeasurable!

Lost is Lost

Today's Health Activist Writer's Challenge is to choose a book, open it to a random page, find a phrase and use that phrase to stimulate writing.  I have no shortage of books around. As I have said before, I love reading. I love the written word. I love books! As I glanced around my office I saw James Patterson's Kill Alex Cross, Harmonic Wealth by James Arthur Ray and so many more.  What to choose?

I decided on the little book that was hiding between Alex Cross and The Book of Better. I love Mitch Albom books so this seemed to be a great choice. For One More Day is the most recent book of his that I have read.  I opened to page 83 which lead me to 84 and the following sentence that struck a chord...

"...lost is lost, and I knew that look because I had worn it myself. I hated her for having it. I hated her for being weak as I was." 

There is so much in that small bit of prose. I can see myself as the author--  being upset when my son has failed in his diabetes care.  In those times when I have allowed him to go on his own with little outside influence from Mom and he fails? I then feel lost and upset. I first get mad at him for not stepping up to the plate and then I quickly hate myself more.  How could I expect so much from someone so young?

I feel lost trying to find that balance.  Diabetes has robbed so much from my son's childhood and as a parent it is my job to keep its toll to a minimum.  I have said before, it just does not seem right that a child should know what carbohydrates are before he can recite his ABC's.  Lancing his finger and drawing blood should not be a milestone marked with a feeling of pride...but in our life it was. 

This quote also makes me wonder what my son must think at times. Mom is the strong one.  Mom makes the choices when it comes to his care.  Mom is the one who knows more than some of the experts we see. Mom is the one that people call to know "stuff".  What must he think when Mom loses it? When he is scared, Mom is not supposed to be lost and scared. Mom is supposed to have it together.

I remember once when Mom really didn't have it together. It seemed that my carefully constructed world was falling down around me like a deck of cards.  I could no longer hide the pain from anyone. I literally sat in the middle of my kitchen floor and cried.  My oldest son sat with me.  My heart broke that he had to see me like that.  My younger son hid.  He was very much like the author.  I could see that he hated seeing me so weak. I understood and hated myself even more.  

We are human however.  Diabetes makes us superheros but also reminds us that we are mere mortals.  Its a challenge to make sure that the moments  of feeling lost and overwhelmed are reserved for the confines of a shower when no one else can see. Its a challenge that I work at more and more with each passing year. Its important to be that willow tree, bending with the wind and not the lost leaf blowing around lost and scared.  Its a challenge but one that I hope I meet more often than I fail.    

The biggest challenge that diabetes has brought to my life...

Today's Health Activist Writers Challenge truly challenged me. What was the hardest lesson that diabetes has taught me?  I thought and I thought. I struggled. I ignored the question and did other things. Diabetes is so life consuming. What is the hardest part? Its all hard isn't it?

What is harder than not knowing if your child will live or die? What is more disturbing than never having a full night of sleep again? What is worse than living in fear that the devise attached to your child could kill him? What is worse than wondering if you will wake to find your child dead in his bed?

There are probably a lot of things.  My son can lead a relatively normal life with diabetes. It is not a death sentence but a sentence to live life to the fullest valuing every second.  So is that the big lesson for me? The real value of life? No, actually I don't think so.

For me, its a lesson that I am still working on. Its called patience.  That is the challenge of my life. Its further reinforced by all of those other challenges. Its waiting, watching, not always knowing what tomorrow will hold. Not being able to change what I want to change as quickly as I want and having to learn to live with what is happening right now.

At 3am, I have to be patient, wait, and hope that the juice I have given my son will really bring up his blood glucose level to a safe range. When it doesn't, I have to have faith that with more sugar, he will be okay because I am there to watch over him. 

As a toddler, I had to patiently learn how to handle a child who did not want to eat despite having insulin in his system that required food.  I had to be patient with him as I made him watch tv until his blood glucose was in range when he desperately wanted to be outside playing with his friends instead. 

When my son went to school, I had to patiently teach the staff in his school to watch out for signs of highs and lows.  I had to help children around him to understand why he may seem "funny" at times and that his pump was not a toy.  I had to be patient and have faith when I allowed him to go on school trips and outings without me.

As my son ages, I am still challenged (and not always succeeding).  Now we are at an age when he wants and needs independence.  I have to be patient as he stumbles with his care. Stumbling now is still safe. Mom is here to clean him up, fix the highs, change the sites and get him back on track.  I have to have patience and know that one day he will learn. One day he will take over his disease and one day he will amaze me with how much he really does know.

For now, patience and I still remain at odds.  I get frustrated. I get scared. I want him to be okay now. If I can't have a cure, I don't want him to have to worry about the high cost of keeping himself healthy. I want changes in health care now. I want schools to understand that you cannot see diabetes but the impact of highs and lows are real and truly are debilitating. 

I keep wanting, and diabetes keeps making me wait.  I have learned a bit of patience. I do know how far my son has come.  I can see him taking care of himself...sometimes.  I know that we have made inroads with governments. I have learned that change is slow and my frustrations only make my life (and those around me) miserable. Slow and steady will see me through. One day I will be a patient person, in the meantime...well I will keep trying!

Diabetes finds Pintrest

Pinboard...create a pintrest board for your health issue.
Those who know me, know that this is by far the easiest challenge for me thus far. I am addicted to Pintrest. I love the images, the recipes, the ideas. I even have a board already created for this! Here are a couple of samples...

  I just love this image! I have no idea how to credit it original poster but it is just so cute and fits with our lives.


Again, if you live with diabetes you have to appreciate the humour in this one too! Thank you Diabetes Mine for posting it!


My third "pin" is of course, Rufus the Bear with Diabetes.  I love Rufus and Ruby! I love what they have offered children with diabetes.  I have had the pleasure of speaking with Carol Cramer, the creator of these bears, and she is a most amazing woman. 

There will be more pins but I will keep them to the Pintrest site...maybe!

I have a style?

What is your writing style?

Is it a bad sign that I read today's writer's challenge and thought..."writing style? What the heck are they talking about?"  I guess that about answers the question doesn't it?

I have no style! I just am. I am not a professional writer. I don't even play one in real life. I wish I was. I love books. I love the written word but alas, I am just a mom who plays a doctor, nurse, dietitian, cook, and a few other things in real life.

Do words just flow from your mind to your fingertips?
Actually that pretty much says it all! I began this blog as my own therapy.  A friend actually read it and wanted to be able to comment and share so I had to move it to the blogspot platform. It was a place to vent and let other parents living with diabetes know that they were not alone--insanity loves company!

Do you plan your posts?
Yes...and no. I have to have something to ramble about. I come up with amazing posts at 3am but usually have forgotten them by 7.  I write down some ideas to touch on one day. I will sometimes comment on things that I am doing or other posts that I have read that have struck a chord with me.

Title first or last?
Last, dead last. My titles are horrible! I love people who have amazing titles. They catch me. They intrigue me. They make me laugh. I struggle to come up with anything witty or that at least makes sense (see the title of this post for example!). I need someone to be my "titler"--the person to read my ramblings and come up with amazing titles!

Where do you write best?
In my mind! In my head, my posts are all brilliant! They are thought provoking. They are witty. I am a Pulitzer prize winner...in my mind.  Sadly, I just sit and my computer, type, leave, come back, scrap, delete, edit, re-post, leave it, come back and eventually press "publish".  Its that basic.

An Insulin pump for a paperweight!

"MOM!!!!! Something is wrong! My pump fell out last night. I feel really weird."

"You are probably just high. Test and get a new site. I will be there in a second."

My son tested his blood glucose level and yelled at me again, "Mom this is really, REALLY weird!! My site fell out and, looking at the puddle of insulin on my sheets, it must have happened sometime late last night, but my reading is in range!"

There is no way that my son could be in range with no insulin. I was sure that something must be wrong.  I retested him on not one, not two, but four different meters. He was fine. Actually he is better than fine. His reading was a nice, pretty 5.0 (90).  He must have made a mistake about the site failure.  My son has had Type 1 diabetes since he was 2.  He cannot live without an external source of insulin.  His pump is the only way he gets insulin into his body.

"I am telling you Mom, I feel strange. I feel better than I can ever remember.  I must be cured!"

"And pigs fly! You cannot possibly be cured just like that. Your body does not just regenerate an organ.  There has to be a logical explanation.  Go and get ready for your day."

My son was adamant. He was cured. He did not need insulin.  He ate his breakfast but refused to bolus. I waited for him to be sick.

Two hours later, I was reminding him to test. He looked perfect--not his usual shade of grey that comes with being high. He showed me his results...5.4 (95ish)! He was perfect again. His grin filled his face.

"I think it will be A&W for lunch with a side trip to Dairy Queen for a banana split hold the insulin! Added to that...I don't think I will bother to test today!!"  With that my son made one last stop before heading out the front door. He turned to his insulin pump that had been left sitting on the counter and said "You've been a good friend for a lot of years, but I am sorry to tell you that you will now be used as a paperweight.  You did a great job of keeping me alive but I am afraid that your services are no longer required!"

With that he was off to enjoy his first day without infusion sets, insulin pumps, glucometers or even glucose tablets.  He was free!

I sat back and remained stunned. Was this possible? Had he somehow been cured? I went online to check with my many friends who also live with diabetes in their houses. The stories were the same! Somehow Diabetes had left the building! It had left the planet! We were living in a diabetes free world!

I felt light-headed.  There would be no more night time checks? I would not have to worry about his readings or him bolusing while he was out? I didn't have to worry about the cost of pump supplies or insulin? He was free? It was over?

I cried. I screamed. I rejoiced with family and friends! This truly was the most amazing day ever if only the annoying door bell would stop ringing. The constant buzzing was messing with my celebrations. Why wouldn't it stop? Was it just happy too?

Finally I realized that the "door bell" was my alarm clock. It was time to get up.  My best day ever was simply a dream to experience another day. One day maybe we will all be so lucky. In the meantime, its time to see if my son tested for that cereal he just had for breakfast.

 

10 Things I couldn't live without

Today's challenge was to come up with 10 things that I couldn't live without when living with diabetes.
1.  Glucometers...where would I be without data???

2.  Cozmo Insulin Pump...I love my son's pump. My son loves his pump. I hate to think about the day when we have to move to a new brand of pump. We love our Cozmo.  We will live with a new company's pump but oh how we love our Cozmo!

3.  Ketone Meter...its weird but hey I like being able to see real time ketone levels.

4.  Insulin...how could I not have put this first?? Without insulin my son would be dead or emancipated at the very least. Insulin allows him to live a full and healthy life!!

5.  My online friends...The Internet connected me to the most amazing people that I have grown to call my diabetes family.  Many of these people have known me and my children for over 11 years now. They have been with us through the good times and the bad. They have shared milestones that only families with diabetes could understand.

6.  My "therapy" group...a group of women who came together with me to talk, to laugh, to drink, to complain, to advocate, and most importantly to just be ourselves.  We were united by our children with diabetes and stayed together because of the incredible friendship that we created.

7.  My internal alarm clock....I go to bed and tell myself that I need to wake up at 1, 3 or whenever.  For some reason, my body gets me moving at the required hour.  I know that I wake because of 18+ years of restless nights but the fact that I wake when I chose continues to amaze me.  On the rare time that I oversleep, I know that my body has simply said, "you need sleep more than you need data. Someone else will watch over him for a bit."  That brings me to #8...

8.  The guardian angels that watch over us at night...It might sound hokey to some but I firmly believe that someone (or more) watch over myself and my son at night.  There have been too many nights that I have woke up at the "wrong" time only to test and find a problem.  Those are the nights that you argue with yourself about getting out of that warm bed but do anyways and say a prayer of thanks afterwards when you catch a scary low.

9.  Diabetes Coverage...I guess we could live without it but the stress that you live under when you have to worry about the cost of each test strip and every infusion site that falls out is incredible.  Having that burden lifted is such a blessing and one that I hope will ultimately be bestowed upon everyone living with diabetes.

10.  CWD Conferences...Its the one time when you are surrounded by others who "get it" completely.  Spending a week with experts who truly know and understand has a value beyond words.  For me, this is also a time to reconnect with my diabetes family.  We talk, eat, enjoy a glass of wine and catch up but its always as if it has only been a few days since we last saw each other instead of a year or more.  I meet new people, make new friends, and put faces with names.  The experience is vital to my limited sanity.

Wow! I did it. 10 things that I could not live without when living with diabetes in no particular order.

The more I read, the more I worry

Today's prompt is a stream of conscious post.  I am to start with a sentence, write and then heaven help us all!!--simply press publish.  Be forewarned as this may end up worse than my normal ramblings!

The more I read, the more I worry...

The more I read, the more I worry about my son and his diabetes care. Since my son's diagnosis, I have closely followed adults who were diagnosed as young children.  I have not been nearly so interested in the tales of people diagnosed with Type 1 diabetes at age 12 or even 20.  Yes, its sad but my son knows nothing but life with diabetes. What will that mean for him? How do I best help him? What have other parents done?

I listen intently when I hear people talk who have been where my son lives. I ask them what their parents did right and pray that I can do the same for my son.

I also listen to their tales of rebellion. Some people, who don't know any different, will tell you that he doesn't know any other life so how can it be as "bad" as a child diagnosed at an older age? I know that his age offers no protection only more dangers.

A teen is a teen. A young adult is a young adult.  Both tend to feel indestructible.  They cannot die. They cannot really hurt themselves.  Their body will always be there and parents hover and worry too much. They are right in that as a parent I do worry...a lot!

Yesterday my son came home after being away for a few days.  I have yet to look at his glucometer. I don't want to freak out at readings not done.  He did tell me that he had run high and almost changed his site. He said that he knew I would have said it was the site and made him change it.  He eventually came down without a site change and felt vindicated in his decision.  Last night he was running high again. I told him to change the site. At 3am he was still high, not nearly as sensitive to that high as he would normally be (normally he would be up using the washroom, etc) and I woke him up to change the site.

It left me worrying even more.  I had recently read about a young man who had A1cs through the roof (we are talking serious double digits) before he got back on board with the help of a loving partner.  If my son will ignore site changes and high readings now, will this doom us to him heading down the same path? Will all of my years of hard work protect him through those years? Will I be lucky and he will not take as destructive a path as some? Will he learn? He says that he hates feeling high. He says that he knows his body. Will that protect him? Will he keep calling me? Will he listen? Will he take care of himself?

The fears seem to get stronger over the years.  I partially blame the aging of my oldest son. He is now ready to spread his wings and begin his old life. Mom's importance has diminished greatly and yet my worries have grown. 

The other day, I wrote a letter to 16 year old me. Some days I wish I could have a letter today telling me that the future will be fine.  Something to guide me over the rough patches and let me know that all of us will be okay.

My Diabetes Theme Song

Today's WEGO challenge is truly testing my creative skills. They have asked that I create a theme song. They obviously have not read my blog and do not realize that I already have a theme song. Remember? "I am the Worrier"  Today's challenge will be to totally destroy the lovely Patty Smith original and create my own lyrics.  Let me apologize before I begin but just be thankful that I am not also singing this!!

I test, test, test away
Its your fingers that have to pay
Feeding on my Momma fears
Brushing back so many tears.

Well isn't d-care primitive?
A wild ride so you can live
Break out of insanity
Lobby governments all we can see
D won't kill
Your momma will

I'm shootin' at the walls of complications
Bang, Bang!
I am the worrier
Yeah, I am the worrier
And night to night I will win
So you'll survive to play again.

I talk, talk, talk to you
Your eyes glaze over needlessly
Listen to me I'll fight the night
As diabetes takes another swipe
Who's the hunter, who's the game?
I fight diabetes in your name
I holds you close in victory
I don't wanna stop you bein' a child
Won't have diabetes goin' wild

 
I'm shootin' at the walls of complications
Bang, Bang!
I am the worrier
Yeah, I am the worrier
And night to night I will win
So you'll survive to play again
I'm shootin' at the walls of complications
Bang, Bang!
I am the worrier
Yeah, I am the worrier
And night to night I will win
So you'll survive to play again.