Better the Devil I know

 

Day 5 and today’s prompt..Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?

This may seem weird, but I would not trade for any other chronic disease.  Each one has its challenges and struggles.  I think of people I know with asthma–they have to carry inhalers at all times and never know when an attack could strike.  They do not always occur during the day.  If an attack happened at night, would someone be there to help?

There is epilepsy.  My aunt and uncle both live with this disease.  My uncle has been seizure free for enough years now to be able to drive and live a “normal” life but the fear of never knowing when one could hit? The embarrassment they sometimes feel afterwards? No thank you.

There is celiac.  That would be easy right? Wrong.  I have considered trying a gluten free diet and then I looked at all of the “stuff” that you have to stay away from.  Its bad enough reading carb counts, watching fat and dealing with fiber and protein but looking for hidden ingredients in food? Add to that the high cost of those foods without gluten  No, I think diabetes will do. Granted with celiacs, you don’t have to carry around “stuff” but you have to be on your toes with every ingredient in every piece of food you think about eating.

Diabetes sucks. I hate dealing with it. I would love a cure but as they say “better the devil you know”! Has this devil given me a new respect for other chronic diseases? Absolutely! Before life with diabetes, I know I took things for granted.  Now when I sit down to a meal with someone and we don’t have to count the carbs or deal with bg levels, I almost feel like something is wrong! Its not normal to do that–not to test or calculate!

I better understand parents who struggle for school supports for their children.  I “get” adults who need time off work for health related issues. I hurt for those who have to struggle to get medications and medical devices paid for by insurance or public health care systems. I value my health in a new light. I appreciate each day in a way that I did not before diabetes.  We are all (usually) happy to be alive but knowing how fickle diabetes can be, brings that happiness and gratitude to a new level.

Do I attribute this empathy with the DOC? Honestly, probably not.  It comes from life experience–watching my son nearly die.  The diabetes online community has brought people into my life who have situations that have made me work harder as an advocate.  It has brought stories that keep me aware of how deadly this disease is.  Most importantly, it has brought me friends and people who also have learned greater empathy and strength because of this beast. 

The Secret to My D-Success

Today’s blog week prompt asks us to talk about the greatest accomplishment you have made in terms of dealing with diabetes–something that I did that made our life better.  My first thought was learning how to dose for food.  That may sound pretty basic but for some reason, it took a lot for me to get this to sink in.

My son was two years old when he was diagnosed.  At that time, he was on a strict meal plan.  I would inject him with two types of insulin and then pray he would eat.  Most of the time he wouldn’t. He would eat and then vomit. He would chew the food and hold it in his cheek without swallowing. He would pass out from lows.  I would cry.  He would cry.  Our life was filled with stress because he was too young to know that he had to eat to cover the insulin in his system and I was too shell shocked to digest the advice I had been given from our diabetes team on how to dose for meals.

In my mind, he had to have insulin to keep him healthy.  He had to have both types of insulin. This was the medicine that would keep him alive. I had learned carb counting. I understood carb to insulin ratios but again, insulin=life and I could not alter that way of thinking. Until I joined the world of the internet.

The best thing I ever did for my son’s diabetes care was dialing up that connection, searching for parents of children with diabetes, joining an email list, and asking what to do about my son going low and refusing to eat. From those few simple steps, our lives changed forever!

One of the first people who told me to dose for what he ate and inject AFTER he ate onlyIF he did eat remains a dear friend today. For whatever reason, when she sent me those words everything clicked when it hadn’t before.  Our lives changed.  If my son didn’t eat, I didn’t inject his rapid acting insulin and our day went on without tears or vomiting!

I now had support. I now had a group of people who understood and had been where I was living.  I had access to information on the latest technological advances.  I had access to the advice of hundreds of endos just by sitting in front of my computer screen and reading.  I had new friends that would comfort me after a rough day and kick me in the butt when I needed to get over things.

I now had a family that would be there for me through bittersweet moments like the first time my son tested himself.  They would encourage me in my advocacy efforts.  This new family would offer support and encouragement as my marriage fell apart.  They would be there to share the pride when my oldest son graduated.

The most outstanding thing I ever did for my son’s diabetes care was joining the Children with Diabetes parents mailing list.  Through the guidance and support of many amazing and now dear friends who have become family, I am able to ensure my son has the best diabetes care.  I know of the latest breakthroughs in technology and management.  I have been able to change federal policy and impact how things are done in a large number of areas.  Thanks to finding that one group of incredible people, I have become knowledgeable and strong.  My son has been able to be healthy and lead a rich life with the entire world in front of him.

Memorable Diabetes Memories

Its Day 3 of Diabetes Blog Week and today’s prompt asks us to revisit our most memorable diabetes day. I really had to think about this one.  The most obvious, and seared in my brain diabetes day is of course the day my son was diagnosed but I havewritten about that one on numerous times. I then thought of the day that I found out that I had one my battle and the Disability Tax Credit was legislatively changed to be fairly applied to all people living with diabetes. Once again, I had written about that one too. (Actually I chronicled it while it was going on) .

That left me to come up with another diabetes memory of significance to me.  I then remembered a picture that I had seen on my mom’s Facebook wall. It was of me and my children on the evening that I won the Jeff Hitchcock Award at the Friends for Life Conference.  That was pretty darn memorable and incredibly surreal. It was definitely worth reliving….

It was 2007 and I had been invited to attend the upcoming Friends for Life Conference in Orlando.  I was beyond excited.  Not only was I going to get to take my children to Disneyland after a particularly trying year but I was going to get to spend time with my amazing online family!  I am not sure who was more excited.

As we checked into the hotel, we were surrounded by people we knew who quickly showed us the ropes.  I needed an extra key for my oldest son because he would be hanging out with other kids and coming and going at different times.  The rest of our time was a blurr. It went quickly as I attended sessions and dealt with a pump failure but as anyone can tell you, there is no better place on earth for a pump to fail than a CWD FFL conference! Within less than an hour, we had a loaner pump on my son and a new one being delivered to the registration desk the next day.

I enjoyed time with friends, a drink by the pond, watching the alligators and simply being with people who understood my life. I was talking to the best diabetes experts in the world.  There were researchers, doctors, nurses, and parents who had been there (and were still there).  Nothing could be better—or so I thought!

The evening of the banquet arrived and my children and I sat with another family that I knew from the parents email list.  Speeches were made.  Awards were handed out and then they mentioned something called the Jeff Hitchcock award.  For those who don’t know, Jeff is the founder of the children with diabetes website, a father, husband, and all round amazing person. This award was first given to him and is now given to people who have done outstanding work in the diabetes world. Recipients include people like lawyer Michelle Rago, Tom Karlya  the Diabetes Dad, Joe Solowiejczyk, Audrey Greenfield, Dr. David Harlan and the list goes on!

Imagine my surprise on that July evening, when it was announced that the 2007 winnerwas me! I was not a world traveller. I was not the face of diabetes. I was just a mom who would now forever be in the company of some of the most amazing people the diabetes community is privileged to have. I was stunned and honoured.

As I left the banquet hall, people were congratulating me.  Some where strangers, many were people whose work I had admired for years.  I was in a cloud.  I was in the best place on earth, with the most incredibly family ever and I had just received one of the highest honours I could ever receive.  That was definitely a very, very memorable moment in our life with diabetes.

My Petition to Mankind

Today’s blog week prompt challenges us to come up with our own online petition. There have been a few petitions circulating lately so if I had my choice, what would I petition for?

That is a real challenge.  I have read a few posts asking for greater meter accuracy and even petitioning test strips to find their way to the garbage can. I would of course love to see both of those things happen! I would also love protection for all children with diabetes in schools. I would love for cheaper air fares that would allow families to travel with greater ease to diabetes related events.

I think the thing that I truly want more than anything else is access to devices and supplies for EVERYONE!  I don’t care where you live in the world, you should have access to enough insulin, syringes, test strips, pumps, and CGMs. I cringe when I hear of anyone who can only test once a day (or less).  I cry when I hear of people barely able to afford insulin. My heart breaks when people have to choose which child will have an insulin pump because both children have diabetes but they can’t afford a pump and supplies for two children. That just should not be.

So pharmaceutical companies, governments of the world, humanity, I am begging of you…

• Please ensure that everyone who needs insulin has access to  the best available insulin no matter where they live.
• Please make sure that everyone, no matter where they live, have clean and sterile syringes.
• Please ensure that all people living with diabetes have adequate access to the most effective glucometers and as many test strips as they need to manage their diabetes care to the best of their abilities. 
• Please ensure that the most innovative insulin pumps are available to anyone with diabetes, anywhere in the world, who wants to use them.
• Please ensure that Continuous Glucose Monitors are available to everyone who wants to use them as another management tool no matter where they live or how much insurance they have.
• Please ensure that all people living with diabetes have access to the best possible tools, education, and devices regardless of insurance, race, financial background, or geographical location.

No one should have to make the choice between food and life, between electricity and insulin.  Let us become a humane and just society offering the best possible healthcare to all of the Earth’s citizens not just a select few.

Signed,

A mother who cares.

This entry was posted in Life with diabetes and tagged diabete

Life is Short Laundry is Eternal: Book Review

Note all of my bookmarks…a sign of a good read!

This book is NOTHING like what I expected. What did I expect? I don’t know but I should have been warned of a few things before starting.

First I should have been warned NOT to read this book in public.  There are too many times that Scott’s writing evokes either tears or laughter or both.  This can be embarrassing and hard to explain when reading in public places. Second, I should have been warned that this dichotomy of emotions would start within the first 20 pages and continue for the entire book!

Because this book came in a package with a diabetes how-to book, I very much expected a book about diabetes.  I was wrong.  Diabetes is huge because his daughter has diabetes but diabetes is secondary to the book’s wisdom and insight.  I quickly went from…what sort of diabetes peeps should read this? To…my cousin and her husband should read this because they live this same life and I bet they can relate! To…my sons should read this. To…everyone should read this.

No this isn’t a life altering book with new and shocking revelations. Its a simple book about love presented in an honest and touching way.  Scott writes about his mother’s support, his love for his siblings, the relationship with his wife, and of course the developing relationship with his children from a unique perspective–that of a stay at home dad. In this day and age, stay at home moms can be the brunt of ridicule   What do they really do anyway besides watch afternoon television?  The stereotype for a stay at home dad is a thousand times worse. Scott breaks through all of those barriers and shows how important the roles of parents are–whether they are the ones working in the home or the ones considered the wage earners.  He shows the incredible value of both partners and how vital it is that they work to compliment each other.

As I have written before, I can judge how good a book is by how many pieces of paper are torn and left as bookmarks to refer back to or how many pages are now marked with highlighter.  This book sees a lot of both.

Scott’s reaction to an examination of his wife during their first prenatal visit upon finding out they were expecting their first child is both honest and hilarious…”I remember looking at Kelly and thinking, Fuck, getting her pregnant is ruining all of the fun that boobs bring to my life!” and he manages to keep this tone up for the entire book. We empathize when he drops his son or loses him in a store. We take to heart the amazing advice he provides on page 81 to “keep moving forward, ask for help when you need it, never give up, and scream at the top of your lungs once in a while, things should turn out fine almost every time. Maybe not as you pictured…but pretty damn good.”

My biggest mistake when reading this book was when I took it to my doctor’s office to read before my appointment. I was at the point when Scott and Kelly’s daughter Arden was diagnosed with diabetes. I always have a hard time with diagnosis stories.  The fact that this little girl was diagnosed at 2 years old, the same age as my own son was, should have told me to keep the book in my purse and NOT read it in public but I didn’t heed the warning signs. Instead, I fought back the tears and pretended that I was there because of a cold.  So much of what he wrote could have been written by me.

“She was only two. Do little kids get sick like this when they’re two?” was so similar to the feelings that I had when my son was diagnosed. It couldn’t be that serious–could it? He was so small. Scott talks about feelings of “dread, anger, shame, and more pressure to be perfect than I had ever experienced” and I knew exactly where he was coming from.

Reading, “I wish that I could tell you that it only took a few days, weeks, or months to shake the feeling that type 1 diabetes brought to me, but in all honesty, it was much longer.  I didn’t begin to feel normal again for two years, and the interim was overflowing with new, frightening and potentially defeating daily situations.” Fit perfectly with the advice I had recently given people at a webinar.

Is this the book to read if you want to learn how to cope with life with diabetes? Perhaps it isn’t.  Diabetes is not the focus of this book, living life is! Scott’s open and frank discussion about life, love and making the most of every memory is advice of value to all of us.  This book should be read by everyone who loves to laugh and values their family. His unique perspective and wonderful humor made this book a pure pleasure to read and a book that must be shared with everyone in your life–young or older.

Baby Steps Forward Perhaps?

Sunday morning brought a vision that shocked me to the core…my son weighing his cereal! I was tempted to take a picture but I didn’t want to scare him or prevent him from doing this again. 

Now that may not seem to be a life altering event to many.  It is something he has been told to do on a number of occasions. I have even shown him how his eyeball has been seriously off but telling him and seeing it happen are two very, very, very different things! There was no harping. There was no “Where is the scale?”  He actually did this on his own! Did it result in perfect bg levels? I have no idea.  Honestly, days later I remain so shocked by this occurrence that I haven’t checked. I am just hopeful that he is learning.

That is, I was hopeful until 3am this morning when he bg level was dropping after a strenuous workout the night before.  At that point I was just irked that he hadn’t listened to me.  I had told him to reduce his basal after exercise. I was positive that he hadn’t.  Once again, I was up for an hour in the middle of the night after being ill the day before.  Something was going to have to give!

I decided that if he hadn’t listened to me and caused me to lose sleep because of it, I would be taking back my sleep in the morning and he could deal with making his own breakfast and lunch (yes, my kid is spoiled and Mom cooks a hot breakfast and prepares his lunch daily despite his age)!

Well it sounded really good at 4am. It still sounded great in my mind at 7am when I was prepared to dish out my consequences to his ignoring my instructions. Unfortunately when he told me that he had done what I told him.  He exercised hours before bedtime and felt that he was okay (as per Mom’s instructions). My argument was gone.  He was learning. He had made a judgement call based on advice received from Dr. Mom and she was wrong. Darn!! I headed of to the kitchen to get breakfast.

We discussed the fact that exercise can have an impact up to 24 hours later.  More work to do but dare I hope that after all of these years, some of my lessons are starting to sink in??

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!