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Posts tagged ‘frustration’

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

 

 

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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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.

Differing Outlooks on Life

My daughter, Nikki
and Rainie

Last weekend as I strolled into a friend’s garden art show, a man who wanted to know about Rainie approached me.  When I told him that I am a diabetic, and Rainie alerts me to when my blood sugar is dropping rapidly, he immediately put up his hand to give me a “high-five”.  He was diabetic also.  As our conversation progressed, he began regaling me with stories of his diagnosis and bemoaning life’s hardships due to being tied to the regimes and paraphernalia associated with diabetes: the regimentation of shots, finger-stick/blood sugar checks, monitoring, food counts, exercise, etcetera, etcetera.  While sympathetically agreeing that life is different when one has diabetes, I began to overhear the lively discussion taking place at my feet between my daughter and a little girl.  The levels of enthusiasm toward life, and life’s situations, could not have differed more.  I was completely taken aback.

Later, I asked my daughter to tell me about the conversation she had with the little girl, so I could share it here.  This is what she wrote:

“…While I was talking with Angelina, the inevitable question came up, “How old are you?”

She responded with a resounding “Six!”

I told her that six was a good age to be and that I had enjoyed being six.

She said, “I think SIX will be GOOD!! I think I’m gonna get my wish when I’m six!

When I asked her what wish that was, she reached into her big glittery purse, and pulled out a well-loved book.  She informed me that she wrote it in there, and asked if I wanted to read it.  As I flipped through the loose pages, I noticed that the book was filled with “wishes” (to see Turtle Man, to fly in a private jet, to wear ‘the’ pretty blue dress, etc.)  When I finally got to where she wanted me to be, I read aloud from the obviously adult cursive handwriting:

 “Go to Disneyland and stay in Cinderella’s castle.  Dress up like Cinderella”

She danced and beamed, and said that she didn’t know if her wish would come true, because the Make a Wish Foundation was still talking to her doctors, but she hoped it would.

I told her I hoped so too – every one.”

(And I hope so too.  Every single one…)

I’m Exasperated … and Rainie’s Doing Her Job!

Wow!  It’s been one of those days!  I’m trying to get out the door for a speaking engagement, when the telephone rings.  It’s a doctor’s office wanting to talk about one of my bills (which had already been paid by insurance).  I’m frantically late and trying to be polite while Rainie is pawing and nudging me.   I tell her that she’s a “good girl” while trying to take notes about the telephone call.  I’m truly beginning to feel annoyed!  I’m getting wound-up as the time slips past – the caller persistently insists I need to pay. (I’m one of those who hates being late!)  As I pull up my insurance records on the computer, Rainie continues to annoy me by alerting.  I do my blood sugar, which seems fine (123 – one of my favorite numbers simply due to its sequentiality).  Finally, the phone call resolved, I dress Rainie in her vest, grab my purse, leash and everything else I need, and rush out the door.  Rainie stops!  She won’t get in the car.  Usually she jumps right in without hesitation.  Not this time.  She is quite adamant about not budging – so I lift her in and shut the door.  I’m steaming!  I hurry to the driver’s side, open the door, and find Rainie in my seat.  She never does this except …

…. except when my blood sugar is too low and she’s keeping me from driving.  I take a deep breath and do my blood sugar.  It had dropped 50 points.  I was too low to drive.

 GOOD GIRL RAINIE!

What does it feel like?

Twin Sisters
Leslie and Rainie
Both Diabetic Alert Dogs

“What does diabetes feel like?” This is a crucial question when you’re caring for, or dealing with diabetes, and its life-impact. If you have your own experiences, please comment, so that more of an understanding can be shed.”

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Sometimes Rainie’s nose amazes me! I was driving past the kids’ playground to get to the part of the park we hike in every morning when Rainie uncurled from the floorboards, and frantically began smelling the wind coming through the open window. She was obviously in some distress, so I pulled into the parking lot, leashed her, and let her out. She immediately led me to the play area, and began alerting on a little girl who was running up the slide with a pink pump clipped to the back of her pants. Little pink-sweatered arms soon encircled Rainie, as I talked to “Emma’s” mom. Yes, her blood sugar was low (65), after having refused to eat breakfast. As Emma’s mom and I talked, she mused, “I wonder what it feels like for her when she goes high and low?”

This is a question I’m often asked, “What does it feel like?” It’s taken me a long time to figure out how to explain the answer . I’ll try to describe how it feels to me. (Please remember that I’m describing this as an adult diabetic. When I was young, I had the same feelings, but no words to describe them with.) And as I describe the differences between ‘low’ and ‘high’ blood sugar, please realize that a diabetic often fluctuates between the two states many times a day due to the nature of diabetes.

Low blood sugar, or hypoglycemia, might be fun if it weren’t so scary and disorienting. Hypoglycemia is potentially life threatening because the brain’s only fuel-source is sugar, and with too little sugar, the brain cannot function properly. Therefore, most of the sensations of low blood sugar are brain-based. If my blood sugar (BS) is dropping slowly, the symptoms may be unnoticeable at first and slowly become stronger;  and if my BS is falling rapidly, I catch the symptoms as soon as I can. The first symptoms tend to be a general ‘fuzziness or blurriness’ in my thinking and perception. It is very easy to not even realize anything is wrong, and slowly become agitated and frustrated because ‘things just aren’t right’. I may also get very cranky or whiny.  One of  the most aggravating symptom of low blood sugar is frustration.  I like to describe it by saying, “On a scale of ‘one-to-ten’ my frustration tolerance is ‘a negative-three’.”  It gets in my way of dealing with every aspect of life, including my ability to make decisions that involve taking care of myself.  Everything becomes annoying – kids, traffic, choices, loved-ones (and others), work, my low blood sugar alert dog, etc.  I often figure out my blood sugar is falling because I’m so easily frustrated.  Living in this frustrated state is especially infuriating on those days when my body is extremely sensitive to my insulin, so I’m dealing with low-blood sugars for many hours at a time.  These periods of insulin sensitivity often happen for no reason I’m award of, and cannot be planned for or avoided.  When they do happen, it’s difficult to be patient while taking care of myself, and dealing with others.  I can only imagine what it is like for other people having to be around me! As my BS continues to drop, my thoughts and reflexes get slower and slower, and my coordination becomes poor.  It becomes more difficult to understand conversations and new ideas. I may also make relatively impulsive decisions. These are the times I’m glad I have my low blood sugar alert dog, Rainie. Her alerts keep me from doing things (like driving) when I’m still feeling ok, but could easily put myself, or others, in danger. (I am not drunk – although I may look that way.) As the blood sugar continues dropping, I become physically unstable, emotionally fragile, and easily overwhelmed. I’m dizzy, clumsy, disoriented, teary, sensitive to light, easily confused, and unable to make up my mind (which is really bad because it means I can’t even decide what I want to eat in order to correct the situation). Even though my lips and fingertips may be numb and my vision may be blurry from the low blood sugar, I get angry when people begin to question me and offer help – often becoming defiant. And I need help! And at the same time, I’m somehow unable to take care of myself. And I’m scared! If things were to continue, there is a good possibility I would become unconscious, go into ‘shock’, and, in the worst-case scenario, die.

The symptoms of high blood sugar, or hyperglycemia, are much more physical than low BS’s are. The first thing I notice is a deep headache. Then I get thirsty and agitated – very ‘squirmy’ and unable to concentrate and be still. I crave water to try to dilute my sugary/syrupy blood. I’ve noticed my tongue feels like it’s a dry cotton-ball sometimes. Then, my body begins to ache. Every part of me feels toxic, as if I’ve got the achiness of the flu. I don’t want to move because it feels ‘too hard’ – like walking through mud. And my brain feels that way too. Sometimes I just want to curl up in a dark, cool room and not move. If my BS gets high enough that I begin to ‘spill ketones’, I can get very nauseated and vomit. High ketones are poison to the brain. I’m also very sensitive to the fact that a few hours after high BS begins, my vision gets blurry because the sugar in the blood makes the lenses of the eyes swell.

High blood sugars can be very stubborn and not respond to extra insulin the way low blood sugars respond quickly to sugar. Often, with high BS, the body is resistant to the insulin because of adrenaline released as a protective mechanism by the liver. This can happen as a response to low blood sugar, exercise, excitement and all sorts of emotions like fright/fear, crying and laughter. And at other times, I am extremely sensitive to my insulin and am ‘low’ for hours on end and have a hard time bringing my BS up. Frustratingly, sometimes blood sugar control seems impossible, as if it’s influenced by the weather or color of socks I’m wearing – there seems to be no rhyme-nor-reason to it. Unfortunately, even though it may only take a few hours for the blood sugar to ‘get back under control’ with either insulin (for ‘highs’), or sugar (for ‘lows’), it takes many hours for the cells in the body (and the emotions) to get back into balance.

It’s easy to get wrapped up with the severity of diabetes. But it’s a part of life, just like joy, laughter and friends.

Life with diabetes is a true seesaw. High and low blood sugars happen. It’s part of living with the disease.  If you have diabetes, or know someone with diabetes, please be patient, and be present. We all have ‘one of those days’ occasionally; unfortunately, for someone living with diabetes, ‘those days’ happen almost every day.

Please help me explain what it feels like for you – whether you’ve got diabetes, or are part of the community that knows and supports someone with diabetes. ~h

The Trials of Being an Artist

Last weekend’s fundraiser for Early Alert Canines was incredibly successful!  I left the house with five large boxes full of my pottery, and the few pieces I cam home with didn’t even cover the bottom of one.  I couldn’t believe the attention my pottery (and Rainie) received!  The compliments were gratifying – I’d never done a big show like this.  Many people asked if I’d be back next weekend, or before Christmas.  I had to tell them I hoped to be back next year.  I knew that I was offering over a year’s worth of work, and there would be no way I could do it again any time soon.

As I was wrapping each piece to get ready for the show, I realized how unique each one was.  Some were thin, others heavy and clunky.  There were different shapes and heights and weights, even when I had tried to make a matched set.   Some people commented, and I told them that when I pick up a piece, I can tell what my blood sugar was doing while I was throwing/creating it.  When my glucose levels are changing rapidly (either up or down), my coordination and balance are affected.  When my blood sugar is high, I can’t control my strength very well; and when it is going low, I have poor depth perception, no frustration tolerance, and it’s best if I quit for the day.

When people make remarks like, “You know, you could have made this thinner/taller/bigger…(etc),” I sigh, and try to remember that, considering all I’m dealing with, I’m doing the best I can – always.  And often times, people will choose to buy the piece we’re talking about, because their knowing the ‘history’ behind it makes “even more special”.