Tag Archives: juvenile diabetes

What would you do if your diabetes were cured?

Recently I ran across an online post asking for feedback to the question “What would you do if your diabetes was cured?” To be honest, I have never pondered that type of inquiry as it has not broached my thought process until last week. I struggled with even beginning to narrow it down to one particular item as diabetes is all I have ever known. Nearing almost forty years with this disease I have taken over thirteen thousand (13,000) injections with syringe and insulin pump infusion, have pricked my finger over seventy-five thousand (75,000) times, calculated carbohydrate intake for sixteen thousand (16,000) meals at a minimum, gotten up in the middle of the night due to high or low blood sugar on countless occasions, have become proficient in math calculations, science, psychology and luck in the life of being a Type 1 diabetic. It is a job where diligence is critical twenty-four hours a day, seven days a week year round. I have lived FOURTEEN THOUSAND TWO HUNDRED THIRTY-FIVE DAYS (14,235) without a break. Wow, what a journey this has been!
Would I gorge myself with sweet treats? Fill the pool up with sweet tea and use Reese’s Peanut Butter Cups as a life-raft and a Twizzler for the rope to keep the little kids from getting into the deep end? These are not paid endorsements but should be! Maybe an onion ring would better suffice as a life-saver in this carbohydrate laden pool. Use a Pixie Stick as a straw for an A&W root-beer float? No, I would pass as the sweet tooth fairy no longer visits my house and has not for years. Would I eat a whole pizza consisting of jalapenos, feta cheese, Italian sausage, Canadian bacon and anchovies without suffering the consequences of blood sugars running high for hours on end due to the bread and fat in said pizza? No, give me all those items without the bread and tomato sauce. Would I be able to forego seeing my doctor of endocrinology five times a year, eye doctor and podiatrist once a year? Would I stop going to the pharmacy twelve times a year to pick up life sustaining medicine and medical equipment costing my family thousands of dollars out of pocket every year? No, as I would still have to give diligence to my overall health and make necessary stops to the pharmacy as needed. Would I jump up and down with elation in relief of the mental, emotional and physical toil that consumes every person that faces the challenge of this burden? No, as every person faces undue trial and tribulations at some point during their lifetime.
This has been a journey and I am truly thankful for the friends that I have gained as well as the bond that has been formed due to this disease. I have lost friends due to death at too early of an age.  Even though the journey has been long I am thankful for the experiences I have had and anticpate those of the future. As stated in previous blogs one often hears far-fetched cures that hold little to no merit. There are new strides transpiring in diabetes research happening now and I am thankful for the technological advancements that have already been achieved. This disease has become easier to manage and the potential to put an end to diabetes related blindness, renal failure and appendage amputations is close at hand with the advent of a bionic pancreas and continuing studies in protecting or spurring beta and islet cell functionality. One day soon we could potentially be involved in a feasible solution to exiting the diabetes roller coaster. We are closer today than we were yesterday and rest in the lead car called hope as breakthroughs are developing on a daily basis making the question: “what would you do if your diabetes were cured” more pertinent now than ever before. Writing this blog has helped me formulate a very definitive answer to this query. Were diabetes cured today I would……….hold my nine year old diabetic son in my arms and be thankfully relieved that he would not have to experience the daily grind of this disease. After that I will ask him, “Will you help me fill the pool up with sweet tea?”

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For the first time, I cried about being diabetic.

 As stated in my first blog I am a juvenile diabetic going into my thirty-ninth year.  I was diagnosed in nineteen seventy-four at the age of two.  Diabetes is when the pancreas produces little or no insulin.  Insulin helps turn sugar, in your body, into energy.  Were you to produce or take too much insulin your blood sugar will get too low or if there is not enough insulin your blood glucose goes too high.  Which is better low or high? Neither.  How do I deal with this?  As a diabetic in order to maintain control I test my blood glucose up to ten times a day, count carbohydrates, exercise every day and visit my doctor every three months, at a minimum.  Categorically it is part science, part math, part psychology, biology, and physiology mixed in with a little luck.

I am a little slow in catching up with technology in the field of diabetes.  I gave myself insulin shots for twenty-six years.  The insulin pump was introduced in nineteen-eighty and I did not jump on board until twenty-two years later.  Six or seven years ago the continuous glucose monitor (CGM), which is a device that reads your blood glucose level every five minutes, was introduced and I have eclipsed my first month in wearing one and love it.  You may ask yourself where I am going with this……..the meat of the matter is coming up:

During my pursuit of being in better health and weight loss I frequent my endocrinologist’s (diabetic doctor) office.  At my three month check up, in December, the doctor asked me when I was due for an insulin pump upgrade and told her “I upgraded in September” and asked why?  She stated that there was new technology coming out and that it was a closed loop pump system and that I had to be on a continuous glucose monitoring system in order to get it.  I immediately said that I wanted it and she informed me that she would submit the paper work for the CGM.  A few months went by and I asked several other juvenile diabetics if they had heard about a supposed closed loop “bionic pancreas” with all indicating “no.”  The usual thoughts ran through my head.  Yes, we’ve been hearing this for forty plus years.  Is it some other farfetched pie in the sky pipe dream?  Can diabetes be cured?  No, it would take a successful pancreas transplant and every attempt has failed.  A fellow diabetic told me that what he is hearing is that it is just an insulin pump that would turn itself off when you are low.  My response…..Why would I go to the trouble of getting a cgm if that is all this device can do, what is the point?  I searched the internet high and low for information on the “bionic pancreas” and found very few articles, blogs and writings other than the usual hyperbole.

Then, one day I found a post by someone in my online pump group forum and the title was “Today, I held hope in my hand” written by Moira McCarthy who is a juvenile diabetic parent and volunteer speaker/blogger for the Juvenile Diabetes Research Foundation.  I clicked on it and began to read because it was bionic pancreas/pump related.  Moira recounted her interview with a twenty-two year old female named Anna that was participating in the field/clinical trial experiment of a bionic pancreas at Boston University Hospital.  The date of the blog is only a month or two old.  Moira was having lunch with Anna while she was wearing the actual mechanism and asked to hold the machine that would give her insulin, check her blood sugar and correctly react according to her glucose readings.  At lunch Anna consumed a potato-pasta meal that would wreck any diabetic’s blood glucose levels and be hard to control. Moira wrote that Anna’s blood glucose remained in the eighties which is the level that a non-diabetics  blood sugar would be.  Here is what Anna relayed to Moira McCarthy regarding her experience:

While I was in the trial, the trouble-shooting went away. Completely away. And because of that, (listen to what she says here carefully folks: this is really something to grasp) I had no guilt. I had no shame. I was forced to give all that up to technology. And man, it worked and it felt good.”  After the trial ended Anna was asked how she felt about the bionic pump and responded:  “I would wear 10 sites in my body if it meant the emotional toll of diabetes was stripped away from me like it was last week,” she said. “I would give up every asset I have to buy that thing tomorrow.”

Moira blogged:  “Guilt. Shame.  Frustration. My friends; THESE are the complications of diabetes that few consider. These are the effects that crush souls of some and challenge the mental health of others. These are the complications we can CURE and cure soon. I know, a smart pump or APP or bionic pancreas or whatever you want to call it will bring people with T1D better physical health. If we can create a tool that keeps most people’s a1c’s below even 7, we are probably looking at a world where kidney transplants, blindness and other such things are of the past. But even if all it ABSOLUTELY does is remove that guilt, that shame, that anger, that frustration from lives …. I’m so completely, completely in.”

 

Those words rocked me to my foundation.  They struck me like a bolt of lightning. Guilt, frustration, shame, anger, sadness and the roller coaster we ride daily…..these are the mental aspects that people do not and cannot realize or grasp unless they have experienced diabetes.  My whole life, as a diabetic, was summed up in those words and I did not realize it until reading McCarthy’s blog.  In all of my years being on this earth, I have never considered diabetes as a disease or as a burden because this is all I have ever known.   I attribute my view of diabetes to my mother because I was raised by an individual that went through the aforementioned emotions, worried about me and never showed me the anguish that she experienced.  As an adult I have a greater appreciation for the wonderful foundation she laid for me.  I thought of her as Moira McCarthy stated “Today, I held hope in my hand.”  I came to the realization that this is actually happening and I may be able to experience this in my life time.  For the first time, I cried about being a diabetic.  – Derek Raulerson

 

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