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        

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