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!

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.

What was I thinking?

Yesterday I broke my own rule...the one that says "Do not look at your child's glucometer for at least 3 days after they(you) have returned from being away.  Focus on the fact that they are alive.  Enjoy telling each other what you have been up to for a few days before you look to see how well diabetes was handled without your input."

My son came home first thing in the morning after being away for five days over Easter.  We had spent a lot of the day chatting and carrying on. I had been in contact with him a lot while he was away.  I was surprised to find him texting me and carrying on conversations while he was gone.  Normally our exchanges when he is away are minimal and involve me waiting hours or even days before he replies. 

While he was away, I asked about readings.  He told me that he was running on the low side but no we didn't need to make any major changes yet.  I was okay with that. I trusted him. He was saying all of the right things.  My little boy had grown up and was finally taking care of himself.  I was happy. He was happy.

With all of this positive energy floating around, I thought what harm could it do to check his meter early? I was going to be proud to see great readings and a decent amount of testing. Wrong, wrong and WRONG!

I saw a great reading and a few other good readings. I saw a low followed by an extreme high.  The biggest problem was what I didn't see. I didn't see testing before meals.  I didn't see a lot of testing period.  At one point he went 18 hours with NO testing.  Not testing for 8+ hours while he was up was common. 

I scrolled through the readings noting time and dates.  I spoke them out loud.  I waited for excuses.  There weren't a lot.  He claimed that the high was probably because he missed a food bolus.  I suggested it was more likely the result of a low that he missed since he was low, didn't retest and went to over 28(500+) a few hours later.  He suggested that perhaps it was time to look at using a CGM.  I was calm as I told him that his behavior while he was away was not only irresponsible, it was downright dangerous. 

I left the room at that point.  Again, I was calm.  I didn't slam the door. I didn't take away privileges (he does so little that there is nothing for me to take away).  I simply left him with the knowledge that I was very disappointed.

Today, I am still disappointed but more than that, I am scared.  My son is 15.  He is in grade 10.  He will most likely have a maximum of 4 years left when he will live under my roof.  He has four years to learn to be independent. He has four years to be responsible.  His health is riding on that fact.  I hate that.  I want to be able to fix this for him but I can't. I want to be able to handle it for him but I can't. Letting go, growing up...its tough enough with my 19 year old who doesn't have diabetes.  Its worse when you throw the dreaded "D" in the mix but all we can do is hope for the best and pray!

Wordless Wednesday

Day 3

To Those Just Beginning...

Day two of the Health Writers Activists Monthly Challenge and today its all about what I would tell or have told the newly diagnosed. At first I was not going to do this topic.  I don't really write to the newly diagnosed--do I? I mean, I just ramble about things that we are dealing with now. Diagnosis was a very long time ago. What do I have to offer?

I then realized that yes I do write to the newly diagnosed. I talk to them at conferences.  I respond to them on Facebook. I let them know that it will be okay.  

They will find humor in the strangest places....Like this past Christmas season when my teenage son discovered the reason for this night time high blood sugar levels--the dog was feeding him in his sleep! There was also the time that my son decided that he no longer should be doing his own site changes.  His doctor suggested that he do them since he was about 13 and now at 15 he has had enough.  His reasoning was typical teen and another source of comic relief for an often draining disease.

We need comic relief because there will be times that parents will feel overwhelming fear.  This is normal. Its the new normal that comes from living with a brutal and unforgiving, silent disease. It will sometimes lead to depression and it is important to recognize it, accept it and get help to find a way to move forward.  We all have our days when we want to be the way we perceive the rest of the world to be. We want sleep.  We want a life without injections or insulin pumps.  We don't want to see blood or test strips but there are sunny days.  There are people who understand.  You will make it through another day and begin to accept your new normal--I promise.  

There is no choice. The alternative is not worth thinking about accept when counting your blessings.  Our children are strong.  They are younger versions of us and we are making it.  They will amaze us and frustrate us.  Diabetes will not hold them back from being incredible. 

Type 1 diabetes is much more than "take an injection and call me in the morning".  It changes our lives.  It changes our perspective. It demands our time and our efforts even when we don't want it to but our chidren are alive.  We will connect with amazing new people who also live this life.  There will be downs but there will be ups and over time you will learn to live life with diabetes not for it.

Let's Talk About Me!

Its April 1^st already and time to once again join in with the WEGO Health blog challenge!  I enjoy doing this. Its a great time to connect with new blogs that you may not otherwise come across.  The WEGO people also provide interesting prompts that require me to look at life from a slightly different perspective. Its great!

Day one asks us to either write about why we got involved with the Health Activists Writer’s Month Challenge or talk about how we started on this path, so I decided to talk about me!  Actually, its because I can’t remember how long I have been doing the challenge or what made me start...except probably the fact that it was an interesting challenge.

But back to me!! Why do I write about my life with a child with diabetes online?  For the therapy.  Quite simply, that is in part why it began.  Writing, journaling, and such has always been my way of getting out thoughts, feelings and emotions.  If I wrote it out, I could work through it. 

I began to write about my challenges.  I wrote about our successes.  I chronicled my fight with the federal government to get the Disability Tax Credit.  I wrote about trying to choose an insulin pump for the first time.  Eventually I also began to talk about our day to day life.  The challenges of a preteen, and now the challenges faced in living with a teen.  We deal with hormones and independence. 

I write to share my fears.  I write to share our joys.  I write to educate and to create awareness.  My son was diagnosed with Type 1 diabetes in March of 2000.  I was an educated young mother of two boys.  I knew about teething.  I had been through the flu, colds and potty training but I knew nothing of diabetes until it barged into our lives and almost killed my son.  In writing about Type 1 diabetes today, I hope to educate other parents, grandparents and the general public on what Type 1 diabetes is and the reality of how it impacts families and their lives.   

Over the years, writing has also allowed me to connect with other parents and those living with diabetes.  It gives those who have not yet reached some of the stages we have to see how we have handled things and what they can expect.  It also helps those who are also living with a teen with type 1 know that they are not alone in their struggles and the strange victories that only those who live here can truly appreciate. 

There you have it...why I write about type 1 diabetes. I am looking forward to the many thought provoking challenges presented over the next 30 days.  I am equally looking forward to learning new things about other health writers.  Let the fun begin!!