NOT HER TYPE

Actress Mary Tyler Moore.  Olympic swimmer Gary Hall, Jr.  Supreme Court Justice Sonia Sotomayor.  Author Anne Rice.  Baseball great Jackie Robinson.  Pop singer Nick Jonas.  Actress Halle Berry.  Rocker Bret Michaels.  Gail’s daughter Lydia. 

The answer is:  They all have/had Type One diabetes.

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I am guilty too.  I worked in the medical field for twenty-plus years, and I didn’t know the difference.  That is, until I had a patient who had Type One.

I knew there was Type One and Type Two, but I really didn’t know the difference; didn’t pay attention.  It wasn’t important to me.

I learned a lot from “Thomas.”  I learned it can be a matter of life or death.  I learned that even small amounts of things like ketchup must be counted into one’s daily carbohydrate count.  I learned it is not an easy road to be on, and it is a lifetime road.

Most importantly, I learned that unlike most Type Two cases, it could not have been prevented through diet and lifestyle choices.  His body simply turned on him.

I felt for Thomas, I still do.  I wonder from time-to-time how he is doing; he had had a stroke in his mid-fifties, and was forced to leave the job he loved.  I still wish him the best on this doubly hard road he is on.

On October 16^th of last year, Gail’s 17 year-old daughter Lydia was handed this diagnosis.  I quickly recalled the difference between Type One and Type Two.  She quickly learned it.

And I am paying even closer attention to the difference now.  It is even more important to me now.

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Lydia hadn’t been feeling well for some time.  She complained of feeling vaguely ill, tired and lethargic.  Also, her appetite increased so she ate more, but at the same time she was losing weight.   She then began to suddenly experience extreme thirst, and frequent urination.  Then, her eyesight began to suffer.  Her local physician diagnosed it, and immediately sent her to a pediatric endocrinologist in Denver, some 3 ½ hours from their home in western Kansas.  His medical expertise and dedication to her health began the quick, but lifelong change in Lydia’s lifestyle habits of food and liquid intake.  Gail has taken her back three times since then, and is scheduled to return every three months.

Depending upon her daily carbohydrate intake, her daily routine now consists of finger pricks at least four times daily, and up to four injections of insulin into either her leg, arm, or stomach.  She, and every other person with Type One diabetes, aims for a blood sugar level of 100, with a range of around 70 to 150 considered acceptable.

This will be done every day for the rest of her life.   The future may hold a pump for her, which is what some people with Type One diabetes use instead of regular injections.

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Because I didn’t know a lot about diabetes, I may have been one of those who tried to offer people well-meant encouragement toward a brighter future, one that may include “recovery” from this disease by watching their diet; changing their lifestyle.  Because I didn’t understand the difference.

Which is why some people have tried to offer the same advice to Lydia.

On one of her first visits, Lydia’s endocrinologist offered her two pages of inspiration, two pages that opened my eyes to the realities, the misconceptions and the management of Type One diabetes.  Following are excerpts from those two pages.  No author was named.

“No one ‘causes’ Type One diabetes to occur.  It’s usually an autoimmune process that might have been slowly going on for years within the pancreas.  The pancreas cannot produce a sufficient amount of insulin to meet the patient’s metabolic needs.  Then, and only then, will blood sugar levels rise outside the normal range.  And it’s only then when the classic signs and symptoms of diabetes happen:  increased thirst, increased urination and maybe weight loss…The patient is not ‘broken’ by this condition.  They can and should do all the things they did before, and strive to fulfill whatever plans they had already set for themselves.  Diabetes should not be an obstacle to this, unless it is placed there by the patient, family or a health care provider.  Since the child is not broken, there is no reason to have pity.  While the diagnosis is unfortunate, it is not to be used to diminish the person.  It is a medical prejudice we just don’t need.  You will find plenty of pity served up your way for the less informed.  Let it roll off your back.  Don’t let any of it in.  It can be a poison…And in dealing with the less informed, I advise new patients to beware all the free advice and counsel from others.  Some of it may be helpful, at the outset it’s best to verify any diabetes statements you hear or read with your diabetes educator…just remember the average diabetes IQ of most Americans is quite poor…never use the words ‘good’ or ‘bad’ in the same sentence with a blood sugar value.  Blood sugar levels are not measures of morality.  They are simply measures of the amount of glucose dissolved in a small sample of capillary blood from the fingertip at a given instant in time…The path to living well with diabetes is full of detours, potholes, narrow roads, false idols and at times open highways with no speed limits whatsoever.  It’s just life.  Don’t give it any more dominance over you than it deserves.  Respect it, then master it.  Make it work for you.  Stay one step ahead of it as much as you can.  It is then you will have learned the secret to living well with diabetes.

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Insulin:  a hormone produced in the pancreas that regulates the amount of glucose in the blood.   Glucose is transported through the bloodstream and used to provide energy for every function of your body.  Glucose is to your body what gasoline is to your car. 

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Lydia didn’t create this problem through poor lifestyle choices.  Her body’s immune system mistook the insulin-producing cells of the pancreas as invaders, and wiped them out.  Now, she must replace these cells daily through doses of insulin self-administered with shots.   The amounts are determined by her blood sugar levels she reads after she pricks her finger multiple times a day.  It is important to remember that Lydia, like many Type One diabetics, doesn’t feel as well overall as she once did.  Mornings are especially difficult for her, because the overnight hours can throw her blood sugar off-balance, and she simply doesn’t feel well.

Imagine having to pump your own heart, or to have to tell yourself to breathe in and out 24 hours a day, 7 days a week, 365…forever.    Some people with Type One diabetes have likened it to that.  When your pancreas doesn’t secrete insulin, your body cannot control blood sugar levels, and your body cannot live forever like that…

Type One diabetes is known as an autoimmune disease, whereby the immune system of the body doesn’t recognize its own good cells, and attacks them as invaders.  Other autoimmune diseases include lupus, psoriasis, Crohn’s disease, rheumatoid arthritis, as well as a long list of others.

 

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Let’s cover some ugly, but necessary facts about Type One diabetes:  All information is taken from WebMD and/or JDRF.com.

*It was formerly known as Juvenile Diabetes, because its onset is typically in childhood.

*Symptoms usually start in childhood or young adulthood; the average age of onset at 14.

*Type One accounts for 5-10% of all diabetes diagnoses in the United States.

*1.25 million Americans are living with Type One Diabetes, including 200,000 people under the age of 20, and more than one million adults over age 20. 

*By 2050, 5 million people in the United States are expected to have Type One Diabetes, with 600,000 cases in people under age 20.

*Between 2001 and 2009, there was a 21% increase in the prevalence (existing cases) in people under age 20.3 years of age. 

*Research is ongoing, but there currently is no cure.  It cannot be prevented.

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In contrast, Type Two diabetes can typically be prevented or delayed with a healthy lifestyle, including eating sensibly, exercising regularly and maintaining a healthy weight.  There may be no symptoms before diagnosis.  It is typically discovered in adulthood, but increasing numbers of children are being diagnosed with Type Two diabetes.  Insulin is typically produced, but it is either not enough, or the body doesn’t recognize it and use it properly.

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In her usual take-charge style, Gail stared down this diagnosis along with her daughter, sending it their message:  “You’re not the boss of me.”

And it’s not.

Lydia has continued down this new road, the road she didn’t want to take, the road she will take for the rest of her life.  But she is doing it with grace and style, even when her blood sugar isn’t quite on the mark, and she doesn’t feel great.   In her last visit to her endocrinologist, her reports were stellar, which means she is figuring out how this thing works.

Her mother’s sense of humor is a boost to any one struggling through any tough times, but having Gail for a mother during these challenges is truly a gift.  Gail has also had to be her cheerleader on the tougher days, as well as her coach.  She makes her get out there and play the game of life, even when she doesn’t feel up to it because of the diabetes.

People have asked Gail how Lydia is handling her new diagnosis.  Often, she replies that Lydia is handling it better than she is, because it is so hard to see your child not be as healthy as they once were, and as a mother, you always want to fix things for your child.

Gail purchased this shirt for her daughter:

We know the value of laughter during tough times.

Suzanne, with her trademark sense of humor—as well as her now-absent thyroid, also faces a lifetime of treatment.

“It’s okay,” she told Lydia. “Only the REALLY cool girls get to see endocrinologists.”

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Every day I work with illness, injuries and diseases as a speech therapist.  In one second, someone’s life can change forever with a stroke or a head injury.

Unbeknownst to her, Lydia’s life was slowly changing long before she knew it.  Her pancreas was slowly shutting down its production of insulin before diabetes made itself known.  In that one second the diagnosis was delivered, her life changed.

When I see people in the aftermath of perhaps their one tragic second, or as they try to navigate their way through a new life they didn’t sign up for–the new road they must take, there is one element of progress and peace-making with this new life that I realize more and more as I practice is crucial:  optimism.

I don’t see gains made when the patient has given up and given in, resigning to their new diagnosis and letting it rule their lives.

Real progress simply doesn’t happen with negativity.  A positive attitude is non-negotiable for leading a fulfilling life when that life doesn’t look like it once did.

With her mom’s and her dad’s help—as well as the rest of her family, and all of us too, Lydia will continue to lead the fulfilling life she always has.

Type One diabetes didn’t keep any of the incredible people in the list at the beginning of this post from following their dreams and achieving great things.

Nor will it stop Lydia.

SHE CAN DO IT!  SHE IS DOING IT!

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As a new student in the diabetes classroom, I am learning.  In the interest of keeping this blog short, there was much more information that could have been included, but wasn’t.  I wanted to provide information to allow others who may have not known the distinctions between Type One and Type Two diabetes, just like I didn’t not long ago.  I wanted to share the inspiration that Lydia and Gail are demonstrating for anyone else who struggles.

Unfortunately, I know that at least a few readers will find this information all too familiar, because they, or a loved one struggles with Type One diabetes already.  You all have been experts at this for a long time, and I have only finished Diabetes 101.  If I have misrepresented any information, please let me know.

 

This post is dedicated to Lydia, and anyone else who struggle with Type One diabetes as a  child or  an adult.