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Posts tagged ‘self reflections’

In My Humble Opinion

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Dear Reader,

At this time of year we are all asked to donate to many different non-profit organizations or charities like the Komen Breast Cancer Foundation, JDRF, the ADA, the Sierra Club, the local food bank, etc.  Many of these we are extremely passionate about – my favorite being, Early Alert Canines (EAC).

Before donating, I ask you to please consider the impact your donation has on a small organization versus a large, well-established one. For example, a $2000 donation to EAC covers approximately 1% of our entire working budget (and provides 10% of the cost of a dog), where the same donation to one of the larger organizations is an unnoticeable fraction of a percent of operating or research costs.

In addition, many smaller non-profits cater to current needs and relief, and rely more upon individual donors than the larger organizations, which have greater access to government and corporate sponsorships and grants.

I ask you to take this into consideration when you make your gifts.

Sincerely,

Hilary

 

 

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The Joslin 50 Year Medal

IMG_0301“Joslin Diabetes Center established this award in 1970 to recognize the remarkable achievement of those individuals who have lived with insulin-dependent diabetes for fifty years or more.  We now extend this tribute to you for your conscientious and courageous attention to the many difficult details involved in successfully living with diabetes over these any years.”

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This is the medal that the Joslin Diabetes Center offers to acknowledge those who have lived with diabetes for 50 years. I had never seen one before this one arrived in the mail for me.

After years of consternation, internal bickering, and some outside encouragement, I finally decided to apply.*  It was incredibly difficult to allow myself to ask for acknowledgement for living with diabetes because I’ve never known any other way other way of being.  Diabetes is part of who I am, and asking for acknowledgement is not.

Yet I decided, “Why Not?”  Diabetes is integral to who I am, and an essential piece of my life story.  (It is also one that I’ve been asked to give a presentation about at an upcoming conference.)  Despite all its challenges, and the dire prognosis given to my family since I was diagnosed so young, I have lived and thrived for almost 57 years with this condition, continually making and changing plans because of the influences diabetes has had on my life.  So I accept this medal with great humility and a touch of honor.

Triumph for Man and Medicine

“Triumph for Man and Medicine”

 

"For 50 Courageous Years With Diabetes"

“For 50 Courageous Years With Diabetes”

 

*However, getting the documentation “required” to prove I’ve been diabetic for over 50 years was an adventure unto itself.  None of the hospitals keep records from that far back, my pediatricians are no longer alive, my father and grandparents who could have vouched for me are also deceased, and my mother is no longer sure of when, exactly, I was diagnosed.  Fortunately, with the help pf my mom and sister, an old family friend, and my 94 year-old Godmother I was able to sleuth together enough information to be accepted.

Thank you to my family, friends, and, of course, my  husband and my blood sugar alert dog, Rainie, for all your nurturing and support.  My life has been, and continues to be a truly miraculous adventure.  I’ve lived through many challenges, and out-lived the “odds” I was given at diagnosis.  I would not be here if it were not for you!

 

 

 

 

 

 

A Walk in the Park

Rainie in the park Earlier this spring

Rainie in the park
Earlier this spring

Yesterday, I came across a snake during Rainie’s and my late morning walk,.  It was a docile, 4-foot long gopher snake* stretched out along the path, basking in the sunshine.  I jumped and gave out a yelp — I do not like snakes (especially big ones, lying in wait to do whatever it is to me that my imagination imagines them to do)!  As it slithered away, Rainie quickly stretched up, gently put her paws on my shoulders, and looked me in the eye as if to console me (as well as, possibly, checking my blood sugar, which was fine).

Later in the afternoon, we went out again.  I was admiring the birds and noticing how dry the grasses have become.  Summer, despite the cool breeze and ocean fog that was beginning to come in, was finally arriving.  As I was walking along, paying attention, yet not paying attention, Rainie suddenly placed her body in front of me so I had to stop then and there.  I looked at her, expecting to see her staring up at me in one of her ‘blood sugar alert’ modes; but instead, she was staring at the ground directly ahead of us.   And there was a very skinny, very long snake.  It was hardly thicker than a pencil.  Rainie would not let me go further (so I decided to take a picture).  As she carefully led me around the skinny creature, the snake slowly moved away.

I can’t help but be amazed!  From our one previous encounter, Rainie somehow surmised that I am to be protected from snakes.  How little we know about dogs and their abilities.

The little snake

The little snake

* There have been no rattle snakes seen in this area for more than 20 years.  If your dog is ever bitten by a snake, please see your veterinarian immediately!

Accomplishments Large and Small

Accomplishments Large and Small – Diabetic Blog Week

Blue   The color of diabetes awareness

Blue
The color of diabetes awareness

How often are we given the opportunity to acknowledge our accomplishments, or are actually encouraged to share our pride?  And, how often do we toil to learn a difficult task, one that we should be proud of, just to have it become routine and ho-hum?  For example:  Not many of us remember learning to walk or run, and then stop gracefully – which are all huge feats, if you think about it.  But now walking is routine, and taken for granted, and the effort it took to learn, long forgotten.  I believe, once a habit has become routine, it is human nature to disregard the fact that we had, at one time, accomplished a huge task.  Let’s take today to celebrate where we are, and the path we took to get here.

When I look back at all that I (and my family) have accomplished in terms of living with my diabetes, I can easily become overwhelmed.  Since being diagnosed as a very young infant in the 1950s, these are a few of the skills that I’ve had to practice:

  • Giving (and getting) shots
  • Using Test-tape (we/diabetics used to test our urine to check for sugar.  That was the only way we kind-of guestimate what our blood sugar  was.)
  • Performing and interpreting finger-stick blood sugar testing
  • Adapting to constantly changing eating regimens, and personal likes and dislikes
  • Learning how to count carbs
  •  Learning about different types of insulin and when they peak and valley
  • Learning how to juggle diet (with insulin), exercise (with insulin), emotions and stress (with insulin) – all a work-in-progress, while…
  • Constantly figuring out how to correct my ‘mistakes’ when I over eat or give/get too little/too little insulin or when my blood sugar doesn’t like the color of my sox (or something), etc.
  • Mastering (sort-of) the pump, dealing with depression, dealing with complications –  for me it’s happening mostly in my eyes
  • Finding other diabetics to talk to, and
  • Getting a diabetic alert dog

Wow!  Those are a lot of skills, and confronting each one deserves a moment of pride, if not a medal.

However, today’s topic for Diabetes Blog Week is to discuss my biggest accomplishment.  This one is easy!  My biggest accomplishment is that I am no longer ashamed that I am diabetic, and that I am no longer bashful about telling people that I have diabetes.  For this momentous step forward, I can thank my diabetic alert dog, “Rainie”.

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As a young child I was taught to hide my diabetes at all costs.  I was taught that it was shameful and something not to be shared.  I grew to be a self-reliant “chronic child,” never asking for help, even when I needed it badly.  Despite desperately wanting to go, I was not allowed to go to Diabetic Camp.  My parents wanted me to think of myself as a ‘normal child’; but instead, I felt felt very isolated, defective and alone.  Unfortunately, I sub-consciously kept these beliefs about myself throughout college and nursing school – even after I’d specialized in diabetes.  It was only after getting married that I learned I could ask someone (my husband) for help – he loved me even though I had diabetes!

This was when I began realizing that I have diabetes and I’m ok!

I continued to evolve and open up about who I am.  In 2010 I decided to apply for a diabetic alert dog.  One of the ‘things’ we were warned about is that when you have a service dog’s leash in your hand, people will ask very personal and inappropriate questions: “What is your dog for?,” or “What’s wrong with you?” or many other questions like that.  With a service dog, it’s more difficult to ‘hide’ the fact that you are different.

Happily, I’ve learned to take these questions in stride.  In fact, when people ask me about Rainie and what she does, I’ll usually say, “This is Rainie.  She is a diabetic alert dog and smells for changes in my blood sugar.  I am diabetic.”  From here, the conversation can turn towards Rainie and diabetic alert dogs, or toward diabetes.  It usually turns toward Rainie.  It’s funny because not too long ago, my daughter mentioned that she couldn’t believe how easily I admit to being diabetic.  “Mama,” she said, “It’s not like you.  You’ve changed.”

I’ve been teaching about diabetes to patients, families and groups for years; and finally, after over 55 years of living with ‘type 1’, I’m finding I can proudly say, “Yes.  I have diabetes.”  And I’m glad I finally can.

I have diabetes and I’m ok!

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Blog Week: Memories

Diabetes Blog Week, “Memories”

Today we’re going to share our most memorable diabetes day. You can take this anywhere…. your or your loved one’s diagnosis, a bad low, a bad high, a big success, any day that you’d like to share.~~~~~~~

Me  at about 3 years old

Me
at about 3 years old

 Since I have had diabetes my entire life, I have many memories to choose from.  I am going to pick a positive memory from ‘way back on “Memory Lane”…’  This is what I remember as a young child (age 4-ish) in 1961:

I remember my dad coming home one evening, after checking on his patients in the hospital.  He said he had something in his pocket to show me.  Like any little girl waiting for ‘one of those gifts Daddy brings home from a long trip’, I danced around in anticipation.  We went into the kitchen where my “mommy” was feeding my baby sister.  The kitchen was darkening in the late afternoon as my dad pulled two chairs up to the small table.  As I crawled up on mine, perching on my knees, my dad unfolded a clean towel and placed it on the table.  He then took one of my glass syringes, and laid it out.  I couldn’t figure out what was going on.  I had already had my ‘shot’ for the day; and my mom was getting upset because she had just finished laboriously boiling/sterilizing my two glass syringes, as well as re-sharpening the syringe needles.  (I was always fascinated as she drew the needles across a cotton ball to check for barbs, then would meticulously sharpened them on a special dark-gray stone.  These, too, were put in the pot with the syringes to be sterilized.   Since they were hand-made, the plungers had to be paired to the correct syringe barrel by matched the numbers etched into the glass – it was quite an ordeal.)

My dad then placed a large paper envelope next to the glass syringe.  He had brought home two of the first disposable syringes.  This was not quite the sort of gift I expected, but my dad was excited, and, therefore, so was I.  We peeled the envelope open, and there was a thin, plastic syringe with the needle already attached!  It was so much smaller than the glass ones I had.  He showed me how to pull the cap off – the needle was so sharp and thin!  I was excited!  My shots had always been the most traumatic time of the day – they hurt, they were big, and the skin on my legs was already bumpy and forming scar tissue. (Only later did we learn that I was allergic to the beef  the insulin was made of in those days.  And, even though the ‘new disposables’ were much smaller than the clunky glass ones, they were still much bigger than today’s.  In those days, the insulin was U40 – 40 units per cc, where today, the insulin is U100, or 100 units per cc.)

The next morning I got to use the other new syringe.  I don’t know if it truly felt better; or if it felt better because I wanted it to.  Unfortunately, I wasn’t able to use the disposables for a couple more years because they were too expensive – 19¢ a piece.  I was too young to know the value of 19¢, but I do know that using the disposable syringes was something I looked forward to.

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I had originally intended my blog, “RainieAndMe,” to explore my life and experiences with a Diabetic Alert Dog (DAD).   However, during the Diabetic Blog Weeks, I will muse about my life and experiences as a diabetic.

 

Diabetes Blog Week: What Would You LIke Your Endocrinologist to Know?

I had originally intended my blog, “RainieAndMe,” to explore my life and experiences with a Diabetic Alert Dog (DAD).   However, during Diabetes Blog Week, I will write about  my life and experiences as a diabetic.

Diabetic Blog Week: “Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes?” ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Whenever I meet new endocrinologists or diabetic educators, I ask them ,”What made you decide to go into diabetology?”  Truthfully, I’m always hoping their decision was due to a personal experience; however, the answer is usually something like, “Well, it seems like diabetic control is all about math.  If you can just get the math right…  The worst experience I’ve had was meeting an endocrinologist in my town who believes she knows what it’s like to be diabetic because she wore a pump filled with normal saline for one whole week!  She is adamant that she knows what life is like and that insulin control is completely about math – and, therefore, should be completely predictable.  If your blood sugars are out of control, it is your fault!  And, I must admit, that the one time I saw her as a patient, I decided, was one time too many.

What I wish any health care practitioner in the field of diabetes could do is feel what diabetes is like – the mood swings, the fatigue, the food cravings, the frustrations that come along with not feeling good, and the fragility of living with unpredictable blood sugars.  How would they deal with the sense that, at times, they are trudging through each moment, as if walking through physical and psychological mud — decisions are hard, one’s balance is off, nothing seems easy because life is hard when the blood sugar is out of control .  I’d like them to live with the unknowing and the fears – questions like:  Am I going to be able to get home if I go on a long bike ride?, or, Is my blood sugar in a good range so I can confidently take this test?, Am I safe to drive?, or, Will my diabetic child be ok going on a field trip/ to a slumber-party/ or swimming or jumping on a trampoline?, or, Will I/my child/my friend or spouse wake up in the morning?

I think just one week of these experiences would awaken compassion and give our health care providers true insight into our lives.

How do you teach “Compassion” and “Empathy”?

IMG_2538When I was working in the hospital as a nurse, I was always misplacing my stethoscope, only to find it hanging around my neck.  Now, with Rainie in my life, I am perpetually doing the same thing with her leash.  I’ve discovered that the neck is a very handy place to put it – so I’ll always know where it is.  Except I usually forget it’s there.  I was reminded of this as I was hurriedly trying to put everything in order to go talk to the local nursing program’s class that is studying pediatrics and chronic illnesses.  As I was attempting to get Rainie and the gear into the car, I couldn’t find the leash because it was around my neck!

 In preparation for my talk on “the psychosocial impact of choric illness on the individual, family and society” (as well as diabetic alert dogs), I asked the students to read “How Does It Feel” from this blog site.  I wanted to try to show the students the impact a nurse can have if he or she tries to put herself/himself in the position, or shoes, of the client, and look at issues from that orientation.  I discovered this is much easier said than done.  “Empathy” is something one develops with maturity and experience.

Here are some of the topics we talked about in class:

I asked what issue do they (the students) think is the biggest fear of having diabetes, or having a child with diabetes in the family.  The major response I heard was the fear of going blind from long-term complications.  This is not what I was expecting from a class that had already covered the biology of diabetes.  But, at the same time, I could see where they got this idea from – I remember the doctors talking to me about ‘maintaining my diabetic regime’, or I might go blind!!  The doctors were using the scare-tactic on me in order to get me to follow their rules.  This must be what the students are being taught in this program.  I told them I had hoped they would talk about the daily problems of the diabetic’s blood sugar of going too low.  Low blood sugar (hypoglycemia) will quickly cause altered thinking, poor judgment, dizziness, accidents, unconsciousness, and, ultimately, death.  We explored what it might be like living with this constant fear, and the life changes that must be made in order to avoid hypoglycemia and long-term complications.

Next we talked about diabetic alert dogs, and how one might fit into a diabetic’s life, and why.  (Rainie was a star!)

We discussed how the first thing a nurses must assess (measure) when meeting with a client is the client’s fear and degree of acceptance of a diagnosis, and find out what ‘burning questions’ they may have.  Without doing this first, no other teaching can happen – especially if the client is truly anxious, agitated or angry.  And, the diagnosis of “Diabetes” tends to bring with it a lot of fear and anxiety, especially if it is in a child.  We explored how, in a perfect family, the whole family might adapt to the new food requirements and exercise plans, as well as be involved in learning what diabetes is all about.  The family and the patient are the nurse’s client.

I talked about how the patient may have an appointment to meet with a nurse in order to learn or review a myriad of information, but, even though the patient may look ‘fine’, their body might be in a bad metabolic/chemical state due to blood sugar problems.  This makes the nurse’s job of teaching more difficult, and possibly frustrating for both the nurse and client/s.

There was so much we could have covered, but I only had an hour, and the instructor had asked me to show how a nurse would teach someone (a family member, a teacher, a school nurse, etc.) how to give a Glucagon injection.  (Glucagon is a hormone that should be injected into a diabetic if the diabetic’s blood sugar goes so low that she/he is not able to eat, becomes combative, is having seizures, or becomes unconscious.)  I brought two expired glucagon kits with me so the students could actually handle them, and mix the two ingredients together as if they were going to teach someone how to inject the Glucagon.  The example I gave was for the students to teach a grandmother how to give a Glucagon injection to her 3-year-old granddaughter, who was having seizures due to low blood sugar.  Before we cracked the cases open, I asked the class if anyone had ever given himself or herself an injection.  All the faces, but one, dropped with an expression of horror!  “NO!”  I asked, “Why not?”  I suggested that the next time they had to get a flu shot or tetanus shot, to ask to give it to themselves, then imagine what it might be like for a parent to have to learn how to give their first insulin shot to their child, or, as in this case, what it would be like for Grandma.  The room became very quiet … Next, we figured out how to break open the plastic box the glucagon kit comes in, uncap the syringe and needle, inject the fluid from the syringe into the glass vial containing the powdered glucagon, agitate the bottle to mix it, and now teach “Grandma” how to give the injection.  I believe my asking the nursing students to imagine doing this to themselves must have “freaked-them-out” because most of them were “all thumbs.”  After much giggling and dropping of the bottles, my time was up.

For me, this opportunity was priceless.  I haven’t “put my nursing hat on” for a long time.  As for the students, I hope they took away a slightly different perspective of life and the teaching process.