Normal is Just a Setting on the Dryer

normalI love this picture. I have since the first time I saw it…and then promptly checked my dryer to see if it was right (and it was!!) So what could be a more fitting title for my first  webinar?  Nothing of course! This was a great fit!

In life with diabetes, how often do we say “This isn’t normal!”?  How often have we heard people ask “Is it normal to feel….?”  All too often! I therefore decided that this was the perfect topic for a webinar.

In case you didn’t know, I have been living with this not so normal life with diabetes for over 13 years now.  I also became a Certified Life Coach last year.  I felt that the two together could really be of benefit to people living with diabetes.  I already helped people at the FFL Canada Conferences but a webinar would allow me to reach people in a variety of places at one time without them having to leave their homes.  How cool was that?

It turns out that researching how to put a webinar together was almost as much or more work than getting the topic and content worked out! After many hours of searching, reading and testing, I found a webinar hosting service, figured out how to allow people to access the webinar and then set about telling people that I was going to do this.

I put careful thought into each detail.  The day had to be one convenient to parents, adults, workers–basically everyone! A weekend therefore made the most sense.  I then had to allow myself enough time to get organized and work on the content. Finally came choosing a time…and there I made my first mistake!! I had a time in my head.  I thought 1pm EST would be perfect. It would be mid-day in the east, late morning in the west, and mid-afternoon for me.  Perfect! Wrong…because somehow in discussing and posting about the event my time calculation was off and 1pm EST was posted as 5pm EST!  Five in the afternoon on the 5th of May…I guess that is how I got it wrong…I was obsessed by five!

Despite the glitch, I have the webinar set.  The date is Sunday May 5th at 5pm EST. I have the content figured out…we will be talking about adjusting to and coming to terms with your life with diabetes! Now I just need you to join me!! Registering is easy.  You will not be subjected to months of spam.  I will not ask for the color of your underwear or any personal details.  You register with your name and email address (so I can remind you when it starts and ask you if you enjoyed yourself afterwards).  On the day of the webinar, you sign in and boom!! we are ready to chat!!

If you know someone who will also benefit from this sort of discussion, please share the event with them!! The more the merrier! You can sign up through the link at www.diabetesadvocacy.com/webinar.htm . I look forward to talking to you on Sunday!

webinar may5 logo

 

1000 Likes :)

The other day I was looking at my website stats and was both surprised and pleased.  It would appear that I reach over 10,000 people each month.  I know for many sites, they see that in the run of a day or even sooner than that but for me that is pretty amazing.

I do not have an advertising budget. I don’t have a huge staff (I am the only staff and I don’t get paid).  The website (for all of its faults and victories) is created by, managed by and filled by me. I do not have a computer background. I have slowly learned html codes on an as needed basis.

The Diabetes Advocacy website has slowly grown and reached people based solely on word of mouth.  To me that is pretty amazing and exciting!

As I have noted before, the phoenix on my logo has a twofold meaning.  There are personal struggles that it represents but more importantly, I felt that it aptly represented the stages that we go through when dealing with diabetes.  At diagnosis our world explodes and falls to ashes around us.  Over time, we see amazing things grow out of those ashes–achievements, friendships, and strengths that astound us (to hear more about my thoughts on this join my webinar May 5th).

Out of the ashes, I created a website geared to Canadians living with diabetes and now it reach over 10,000 people each month.  I am a mom of a child who was almost killed by this horrible disease sharing information with thousands of people.  It’s rather incredible and humbling.

I am honored when I go to various diabetes engagements as an audience member and presenters as well as other attendees come up to me and either say “Oh you’re that Barb?!”  or immediately tell me that “I send people to your site everyday. There is no better source of information for _(fill in the blank) ___”.  They are the reason that I touch so many people.  They truly touch me.

Clipart Illustration of a Bunch Of Floating Party Balloons With

Today my Facebook page reached 1000 likes.  I know that some sites have done that in a matter of days after opening a Facebook page.  In my case it took time to develop that relationship.  It happened by way of friends–some unmet, who liked what they read, learned or heard and shared with their friends.

Thank you everyone for joining me on this crazy journey. You truly do make it a lot more pleasant! Here’s to reaching over 2000 Facebook people next :)

Balance, Teens and Parents…Does it happen?

As I have written numerous times, our life with diabetes is far from new.  Diabetes barged into our lives over 13 years ago.  We didn’t invite it in but it has become very comfortable in its role of messing with our lives and shows no signs of going anywhere anytime soon.

In the early days, my son was a toddler.  That presented its own challenges but diabetes was mine to deal with 24/7.  I had to count all of the carbs, try to tell him when to eat, inject him and of course test his little fingers multiple times during the day.

By the age of four he reached his first diabetes milestone and was able to lance his own finger and apply the blood to a test strip.  The goal of course has been for him to take over his own care. Mom won’t always be there and frankly, there are many times when he really does not want Mom to be there!

Allowing him to have more freedom and gently (or not so gently) pushing him to care more for himself has many repercussions.  It’s good for him to be able to “do it” without Mom and foster a sense of independence.  It is the perfect time for him to make mistakes–when Mom is here to help him fix the errors and provide some guidance.  It can also make Mom slack and feel guilty.

Moving from dealing with diabetes 24/7 to having someone else carry the meter, bring the glucose, test and bolus can lead to times when I panic.  We have gone on quad rides and I will feel a panic attack begin as I realize that I do not have glucose on me.  Does my son? I forgot to check!  He appears well-trained and he always has some in his jacket so my heart can beat again. Despite that fact, I feel guilty and terrible. I can forget–he can’t.

After many years of fights about not testing enough, I find myself avoiding looking at his meter.  Someone once suggested that I never look at his meter but he still needs help making basal/bolus changes so downloading and analyzing trends is still very important for me to do with him. I once said that I would do this on a weekly basis but some times that week has turned into 10 days.  When I finally look he has missed at least one or two tests every day.  I want to get mad at him but I begin to think that it is more my fault.  I was not on top of things. I was not the adult. I was not the guide that I am supposed to be. I also remind myself that I can lead him to the meter but unless I lance him myself, I cannot make him test.  I often still remind him to test but have come to realize that if I don’t specifically ask what his reading is, he may simply nod, mumble and not bother to get a reading.  I feel like a bad mother and yet I also remind myself that he has to learn. It is his disease.  I may have given him the body by giving birth to him but it is now his to protect.

Its a difficult balance–trying to figure out how much to let go and how much to hold on.  This is not something minor.  This is a life-threatening disease with real implications.  An ignored failed site will very quickly (in our case) lead to DKA. Lows that are not retested and monitored can lead to seizures.  My job is to protect my children.  My job is also to allow them to grow and learn.  It’s a difficult balance and I know that I fail at times.  I simply pray that I get it right enough times that he will remain healthy and happy in the future.

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Until There is a Cure–A Book Review

A few months ago I was asked to read and give my opinion on Gary Scheiner’s latest book.  I have listened to Gary speak at Children with Diabetes Conferences. I have spoken to him on  number of occasions.  I have heard the praises of his book “Think Like A Pancreas” and continue to swear that I will read it soon, so I was really excited to get the chance to read Until There is a Cure. I had no idea of what I should expect of the book. I wasn’t sure who the target audience was and wondered who would benefit the most from its wisdom? I began the book eager to see what I would learn. I love to read. I love to learn.  I love to find new ways to make my son’s life easier and more complete.  Its not surprising then that by the end of chapter one I had many passages highlighted and marked to come back to later.

cure bookIn the first chapter Gary aptly points out that it is unrealistic to expect your doctor or nurse to be the expert in your diabetes care. It is your job to do so.  It is your job to learn and become educated. Until There is a Cure allows you to do just that. Gary wisely warns that you must strike a balance in your diabetes care and tells the reader…”If you put more time and energy into taking care of your diabetes than you put into your family, work, or social life, something needs to change.”

 

By the second chapter, we get a lesson in Diabetes 101.  While most of it was review for those of us who have been playing this game for too many years already, there was still information to learn and understand. Information on dietary supplements, exercise, stress and depression help to make a demanding condition more understandable.

As the book moved on to discuss insulin and delivery, I was very intrigued.  It was great to see the “Trend” boxes with short tips and bits of information. The box which highlighted my own personal belief that “The type of pump should be chosen by the person who will be using it, not his or her physician.” made my day.  This was also a great section for those living with Type 1 as well as Type 2.  In reading it, I realized quickly what type of therapy I would want if myself or a loved one were diagnosed with Type 2 diabetes.

By chapter four we are over halfway through the book and get some great tips on the many glucometers available as well as some information on various Continuous Glucose Monitors.  I was a bit surprised when I read that “meters themselves cost about the same as they did 20 years ago, and test strip costs have actually increased.”  I see that meter pricing has not really changed although personally, we have been given a large number of monitors because of the large number of test strips that we use on a monthly basis.  Again personally, I have seen a slight decrease in test strips.  Perhaps this is a geographical difference and the drop is not overly significant but test strips which consistently cost at least $1 per strip, now cost me around 80 cents. Not a huge savings but I will take what I can!

The second to last chapter of this book deals with a subject that none of us want to look at.  It is a chapter that those of us who have been in this game for a double digit number of years fear.  This is the chapter on complications, but Gary doesn’t dwell on the negative.  This chapter is titled “Advances in Fighting Complications”  and addresses how we can be proactive in our care.  Instead of leaving you with a feeling of inevitable despair  there is hope offered here.

As I finished the book, I was exhausted to think of how complicated dealing with diabetes was.  The reader is taken on a journey through the glycemic index, graphs on glucometers, insulins, vitamins, exercise, Alzheimer disease, depression,  Diabulimia CGM technology, how to fight complications and finally where to find support .  Despite the daunting content, the book was surprisingly light and easy to read. It is a great resource for the newly diagnosed Type 1 or Type 2 person living with diabetes.  It also provides some great information for veterans and those who are diabetes information junkies.

Until there is a Cure: Book Review

To read my review on Gary Scheiner’s new book “Until there is a Cure”, please go to my new blog site at
http://diabetesadvocacy.com/blog/until-there-is-a-cure-a-book-review/

Thanks!

Diabetes is HARD work!

Yesterday I finished reading Gary Scheiner’s new book “Until there is a Cure“.  I will be writing about it in more detail later this week but one thing struck me as I read–diabetes is hard work! As I have mentioned numerous times, I have been at this game for over 13 years now. I should kind of have an idea of just how hard this diabetes thing is to handle but seeing it in print made it worse.

I was tired and overwhelmed by what I read.  I worried about my son once again.  There were complications to concern yourself with as well as preventing complications.  There are reading before you eat and after you eat.  You need to try to eat lower glycemic food (I am only just figuring out how the glycemic index works after years of a mental block of the concept!). Some times you should graze, sometimes you should pre-bolus, sometimes you should….throw your hands up and say I can’t do this!!! I am not a pancreas! I am not God!!! I am just a fallible person!!!

Yes that was my foot stomping,  with childlike screams, and ranting on my sleep deprived Monday! Now granted after making me feel inadequate, overwhelmed and an underachiever, Gary notes the many great online resources out there. He never suggested that I am a failure. He doesn’t judge or say that you have to do this, this and this or else but just reading about the various types of insulins, meters, trending software, complications, and preventative care initiatives, I was exhausted and sad.

Diabetes asks so much of us. People think that diabetes management means that  you inject once a day, avoid sugar, and lose weight.  That’s no big deal.  Those of us who live with diabetes know the real story.  Parents of children with diabetes have the added grey hair, extra wrinkles and bags under the eyes to prove it! photo

Opening Tablets at 2am could be an Olympic sport!

According to Facebook, I was not alone in my early morning fight with diabetes.  I noticed that many other parents spent more time awake last night than asleep thanks to the dia-beast!

Last night my son was the picture of health and fitness.  I could hear the weights clambering as he lifted and pressed. I watched him haul his body up and down on his chin up bar and tried to convince myself that I could do that if I really wanted to. As I headed off to bed, he sat at our table chopping fruit and adding it to his plain yogurt for a snack.

He had been high the night before but I was guessing that working out and low-fat foods were going to see bg levels in range.  Well, that is what I hoped but at 2am I woke up and decided to see how things were going. He was 5 (90).  I hate five.  It’s a beautiful number during the day and a nightmare in the early morning hours. I just never know which way it’s heading.

Last night, I was pretty sure that I knew.  There was still a little bit of insulin onboard and I was certain that he was going to drop. Just in case I decided to give him some glucose.  I love glucose tabs for just these occasions–a glucose top up. Its perfect for the times when perhaps a tiny bit of sugar is all that you need.

I dug around in my son’s room trying to figure out where he has hid his Dex stash this week.  It was in the chair beside his bed–under the blanket, the hoodie, the pillow and various other articles of clothing.  The next challenge was to find tablets. Every time I grabbed something it was a bottle of liquid glucose.  I finally found a small container of tablets which of course was sealed.

How the heck is a person who is low supposed to get into those things? They are sealed, stretched and locked up tighter than anything else! I remembered that there were scissors on a table in the room. I grabbed them, cut open the tablets and eventually was able to feed my son a couple of tabs.

I headed back to my room to catch up on 2am Facebook and Twitter.  After 15 minutes, I rechecked to see if it was safe to sleep. It wasn’t.  He had dropped.  I dug back in the stash.  It was time for a bottle of liquid glucose. He loves this stuff but once again I was faced with the difficulty of getting it open. I finally slid my nail around the neck, got it opened and convinced my still sleeping son to drink on demand.

By 3am all was good and I could go back to bed and try to sleep but I was still stuck with the thought of what if I was the one low?  Would I be able to open the tablets? How would I get open the bottles?

glucose tablets

I guess you have to plan ahead and have the seals broke before you go to bed or have someone else willing to crack them open for you.  Not good. Not good at all.

 

In case you haven’t noticed, I have moved the blog over from Blogger.  Please follow me from here. 

Opening Tablets at 2am could be an Olympic sport!

I have moved!!! Please go to
http://diabetesadvocacy.com/blog/openingtablets/ to view this post and follow new ones!

Another Diabetes Blessing

Last night I rolled over in bed, put my arm near my face and went…YUCK!

My son had dropped insulin on my arm! I was laying in bed when I realized that we had forgotten to reset his basals back to “school days” after 10 days of Easter vacation.

He made his way into my room with pump and site change gear in hand. I told him that I just needed his pump but he said that his alarm had gone off earlier so he might as well do both.

Holy cow! Was it a full moon yesterday? It must have been because his site change alarm went off AND he changed it the same day??? This was beyond belief! We did the site change, fixed the pump and he was on his way but unknown to me, he had left me that present…a large drop of insulin.

After my initial “YUCK!”  I had to laugh to myself.  Before diabetes moved into our lives, that smell was reserved for the opening of a BandAide brand bandaid.  You knew that the cut was safe and sanitized. Now it evokes new images of syringes, cartridges and life saving liquid.

The smell is still rather disgusting when it arrives in the form of a puddle on your arm as you are trying to fall asleep but without it…well its definitely a blessing more than anything else.

Another Diabetes Blessing

Last night I rolled over in bed, put my arm near my face and went…YUCK!

My son had dropped insulin on my arm! I was laying in bed when I realized that we had forgotten to reset his basals back to “school days” after 10 days of Easter vacation. 

He made his way into my room with pump and site change gear in hand. I told him that I just needed his pump but he said that his alarm had gone off earlier so he might as well do both. 

Holy cow! Was it a full moon yesterday? It must have been because his site change alarm went off AND he changed it the same day??? This was beyond belief! We did the site change, fixed the pump and he was on his way but unknown to me, he had left me that present…a large drop of insulin.

After my initial “YUCK!”  I had to laugh to myself.  Before diabetes moved into our lives, that smell was reserved for the opening of a BandAide brand bandaid.  You knew that the cut was safe and sanitized. Now it evokes new images of syringes, cartridges and life saving liquid. 

The smell is still rather disgusting when it arrives in the form of a puddle on your arm as you are trying to fall asleep but without it…well its definitely a blessing more than anything else.