Intro text

I am a woman, wife, mother, sister, daughter, nurse, executive, learner, diabetic, leader, thinker, solver, and doer who is learning how to "be". You are welcome to join me.

Thursday, October 15, 2015

Placing an order - I'll have 2 of those please!

Hey there!  It's been a while since I have posted.  Life has gotten busy which always means opportunities for new lessons!   My message to myself and to you, is to set your intentions, and then believe they will happen.  Much like if you place an order on Amazon.  How much worry and emotional energy do you spend about if it will arrive?   For me, when the order is placed I let it go, knowing it will show up. For the most part, it appears without fail.  If there is a delay, just a brief conversation or email rights its course and there it is on my doorstep a few days later.  II am trying to have that same perspective with my intentions.

Our thoughts, prayers and dreams manifest exactly the same way.  If we place the order confidently, we only need to let it go, sit back, and believe it will happen in due course.  No worry, no concern about how we want it to happen, but a calm expectation that it will be delivered when it should. The tricky part is that the opposite can occur too. When you doubt you deserve the delivery or that the UPS guy will find your house, it might not show up at all.  You might be too scared to answer the door or open the box and the dream/prayer/wish is unrealized.

I have seen this happen again and again.  I worked with someone years ago who told me about his experience of losing his wedding ring.  When it went missing, his initial reaction was fear and panic.  But he had read some new books, gained some new perspective, and decided that he would act as if he still had the ring.  He washed his face and hands each morning and went through the act of putting on the ring he no longer had.  He wrote notes to himself that said he still had the ring.  He believed it wasn't lost for good.  This man worked out religiously and carried the same bag to and from the gym many times a week.  He had looked in the bag for the ring, but it was never there.  One day, he opened the gym bag and there it was.  Either a perpetual oversight or his belief/prayer/wish come to fruition.

As he told me this story, I told him I wanted to put this idea to the test.  I said, "I want a big blue marble".  Just some random object that you don't see every day.   I set this intention in my mind that this would come to me.   It was a bit of lark and I never gave it any thought or worry.   Just said the words and forgot them.  It wasn't a week or so later that I walked into my office to see this marble on my keyboard.  

Of course, I was astonished and amazed!  Anyone within 20 feet of me knew something was up.    Finally another colleague confessed.  He had overheard us talking  about a "big blue marble".  Over the weekend he was cleaning out some "stuff" and found this giant sized blue marble.  He remembered hearing my conversation and decided it would be fun to surprise me.   He placed it on the keyboard on my desk.  

Who is to say it was coincidence, just an anomaly, just a friend playing a joke, or perhaps the fulfillment of a wish/prayer/dream?  The why and what don’t matter to me all that much.  I will never be able to explain it, but to me, it wasn’t random.  It showed me how much our thoughts and words set into motion events that play out in our lives.  What we truly believe comes to fruition because it changes how we make our minute to minute decisions.  It may be our doubts, fears, ambitions, calling, hopes, prayers, insecurities, visions, dreams, ideas or things we haven’t even recognized.   But those things influence each decision we make.

So what are you "ordering on Amazon"?  What is going to show up on your porch?

I am trying to be more mindful – but it is not as easy as it sounds!

I got your back~

Friday, June 5, 2015

Are you an eagle?

Just started reading this new book "Awareness" by Anthony de Mello (Thank you for the suggestion Cory) and the first story had such an impact I had to share it.

"A man found an eagle’s egg and put it in a nest of a barnyard hen. The eaglet hatched with the brood of chicks and grew up with them. All his life the eagle did what the barnyard chicks did, thinking he was a barnyard chicken. He scratched the earth for worms and insects. He clucked and cackled. And he would thrash his wings and fly a few feet into the air. Years passed and the eagle grew very old. One day he saw a magnificent bird above him in the cloudless sky. It glided in graceful majesty among the powerful wind currents, with scarcely a beat of its strong golden wings. The old eagle looked up in awe. “Who’s that?” he asked. “That’s the eagle, the king of the birds,” said his neighbor. “ He belongs to the sky. We belong to the earth— we’re chickens.” So the eagle lived and died a chicken, for that’s what he thought he was."

Wow what perspective!  How much of our lives do we live trying to be what others expect us to be or what we think others expect us to be?  I believe God created us to be eagles and our own fears, worries, "shoulds", comparisons and insecurities turn us into chickens.

Go be the eagle God made you to be.  It is actually quite silly not to.  Wow - hit me smack between the eyes!


Monday, May 11, 2015

Riding the waves

Whenever I feel disconnected, I often look to nature for inspiration.  Today as I spent some inward time trying to figure out things happening (or not) in my life, I noticed a large tree whose leaves were swaying in the wind.  Something about that gentle sway was comforting.  It reminded me of other things that have a similar effect:  waves lapping the shore, the wind whispering over a wheat field, the rise, and fall of a sleeping baby's chest. They all have an unending rhythmic motion that is the stuff of life: in and out, up and down, ebb and flow, contract and release, inhale and exhale.  Unstopping.

Even better than imagining the waves, I love floating on them.  There is nothing that makes me feel more peaceful than relaxing on a blow-up air mattress and bobbing in the waves or rocking gently in a boat on a lake.  In those moments, I completely surrender and allow myself to be moved by the unseen forces. There is no fighting or struggle just a knowing trust and the feeling of being cradled and safe.  But try to resist those forces or alter the rhythm and "BAM" the struggle begins.  It is exhausting to stand waist deep in the ocean and fight against the waves.  Try to stop the inhale/exhale of my breath - quickly I fail in that effort.  Stopping the wind - impossible.  It would appear crazy to try to avoid these forces- right?

Ever heard they term "waves of emotion"?   I now see them as forces/emotions that roll over me and they are unstoppable - just like water, wind or breath. Yet I have tried for years to resist the painful ones.  I ignore them, deny them, I medicate them, I explain them away.  If they are pleasant, I cling to them, try to save them, hold them, and recreate them.  Controlling these emotions is as impossible as stopping the wind, the waves or my breath.  

The lesson I am learning now is to ride them. Enjoy them if they are pleasant.  Experience them fully, revel in the pleasure, and then,  let them go.  If they are painful, acknowledged them, sob through them, sit with them, and then, let them go.  The more I cling to the memory of the pleasant ones or avoid the reality of the painful ones, the greater the pain and the longer I struggle.

I am very visual and it helps me to imagine myself holding back an enormous wave of painful memories/situations/stuff; those things that I didn't deal with or acknowledge as well as those things I cling to out of fear of forgetting.  The wave grows and grows.  It is huge and the amount of effort it takes to keep it at bay is exhausting.  I am learning I need to just ride it out.  I get that backlog may take a while to wade through.  I can’t be sorry I didn’t have the insight then that I have now.  The timing is what it is. But now, as new situations occur, I am trying to just ride them out.  Let them occur.  Acknowledge them for what they are.  Let them wash over me and let them go.  It is so much easier and it becomes fleeting.

In simple terms, it is turning to face my fears/weaknesses/set backs. I now learn and then teach my kids coping skills for the waves they will experience. The understanding that I am no longer contributing to my giant "wave bank" is a good feeling.  Over time I am riding some old waves and letting them go one at a time. Whew!

We all face challenges daily.  For me it is diabetes, motherhood, wifedom, career (or lack thereof for now), my aging body, my distant (in miles) family, the desire to make things orderly, my burried past, and my unfolding acceptance of where I am on my journey.  So I am trying everyday to relax into each breath, each wave, each breeze, and each gift I recieve from Mother Earth/God/Universe.  I see my journey now is to be grateful for the waves, not to control or stop them.

And yes, those last words are from a former control freak who learning to accept what is.

Breathe in.  Breathe out. 
Consider yourself hugged.


**Please consider sharing if this makes sense for someone you know.  I love feed back!  Comments are super!

Tuesday, April 7, 2015

I am a professional "should-er"

I should do this or that, I should worry about what other's think, I should wear this, I should go to this function, I should earn so much money, I should work til I am exhausted, I should put everyone else first, I should be thinner, I should be less wrinkly, I should do more for church, I should do more at school, I should do more with friends, I should do more for myself, I should be a better wife, I should be a perfect parent.  I should, I should, I should! Arrghghghg!  It is exhausting!

As I have become more mindful and aware of what drives me, of my choices and of my reactions to others expectations, I see that I have lived a bad case of the "shoulds".  To change this, I am digging deeper into how "shoulds" happen and how I can change.  

Starting with the definition:

Should;  past tense of shall. Meaning must, ought, used to indicate duty, propriety, or expediency, obliged, planned or expected to

First clue - it's in past tense!  It is water under the bridge and it is not present tense.  In trying to live a more mindful existence, anything that is past tense is probably not a good rule to live by.  Even in present tense of shall, it is about fulfilling what someone else thinks is right/just/expected.  Makes me wonder who is the author of my "shoulds"?  Where do these "shoulds" come from and who gets to decide?  Society pressures us that we "should" do this or that, family and friends give seemingly helpful advice of what we "should" do or not do, marketing and advertisers blatantly try to convince us we "should" buy this or get that. 

It appears it for the greater good -right?  If we follow other's advice we reap the benefit of their efforts and experience, we benefit from  the expertise of people far more knowledgeable than us. Somehow, we buy into the idea that if we meet these expectations, we will be happy because we have "done the right thing"; that if we do the "shoulds" we won't suffer the pain of self-disappointment, other's judgment, or society's ridicule and will benefit from the collective wisdom.

And sometimes it works.  It feels good to be praised, to be honored, to be accepted, to fit in.  But it feeds into itself - more making everyone else happy, more praise, more acceptance.  It can be quite the high!  However, the catch is that the deciders of "shoulds" are never satisfied.  They always want more.  And we try until we are exhausted and disappointed in our failure to "be enough" for the "shoulds".  We end up discounting our own internal wisdom and intuition.  We become obliged to expectations that we never agreed to.  

Somewhere in keeping the "shoulds" happy, we lose our "musts". The things we must do to feed our soul, to express ourselves, to use our unique gifts, to love and be loved, to live our lives.  It is those things we "will get to later when we are not so busy".  We never get to them.  Our soul shrinks a bit and our inner voice becomes a bit quieter.  We become so good at presenting the veneer the "shoulds" want, that we forget how to be ourselves.  When we feel that the "shoulds" really like our fake self, we begin to doubt the worth of our real self.  

The pattern is easy for me to see, but harder to break.  It requires self-awareness for every decision.  A pause to consider why I am making the choice.  Is it my "must" or someone else's "should"?  Only when I figure out that answer, do my options become clearer and my path more focused.

I had this occasion yesterday.  Every three months I visit my endocrinologist because that is the standard.  It is what "should" do. It is not a fun or very beneficial thing for me but the price to pay to get my prescription and lab results.  It was a typical visit. Insurance verification (same), Height/Weight/BMI (same), blood pressure & pulse (normal), review of meds list (same), review of immunizations (same).  Thank you Meaningful Use and Obamacare for keeping such good records of this info.  Wait for provider in a room with the loudest ticking clock ever, then shoes off for toe inspections (normal), listen to heart and lungs (normal), ask about eye exam (done, sent in the results, no evidence of retinopathy), review labs (had them done the week before with another lab draw to save a stick - A1C was 6.5 - YEAH ME!!  rest were normal),  review info downloaded from my pump (still random odd readings that don't make sense - nothing new from last 25 years), ask why I have high readings (provided a week's worth of food diary that she sat aside), told I should bolus before meals (repeated that it is my choice to eat first so I know how much I actually ingested), asked if I needed refills (no - I do online pharmacy, they manage the refill process electronically) and that was pretty much the end of the visit.   

I "should" have said thanks and been on my merry way.  But I really wanted something that would make this trip to Dallas worth the gas in my tank! The provider got a TON of data on me, but I didn't "get" anything.  So I asked some questions.  I was curious if there was anything new for Type I's?  I keep up with things online, but she has the inside track.  Unfortunately the answer was - just some oral meds for type 2.  Nothing for you.  Sigh.  OK, maybe a different approach?  How happy do you think most of your patients are?  How well do they cope with the challenges of diabetes?  What do you do to help them?  The answer was very telling.  She believed it was mostly a personality thing.  Some had it, some didn't.   

Things for me to one is prepared for the emotional roller coaster that is diabetes.  I don't think it is her, but the system that creates that mindset that people with diabetes "should" do all the things the system dictates. Perhaps the people with the "wrong" personality, who "should" be handling it better, are just lack the coping skills to view it from a new perspective.  Or perhaps they have other competing "shoulds"(children, jobs, fear of hypoglycemia) that force "diabetes perfection" (sarcasm intended - it doesn't exist) to the back burner?  

I stop on my way out to pay my bill ($116) and the receptionist says she we would like to see me in 3 months.  I "should" make the appointment.  But I don't.  I stop and consider my options and I decide to try a different approach.  I am going to write a letter to my provider to see if we can do things differently.  I am not willing to spend my money for the services I have been receiving.  I understand that she benefits financially from complying with Obamacare by adhering to the standards set forth and submitting quarterly information.  But "must" I really pay her for that?  

Could we try something new?  What if I had my labs drawn near my home in three months (instead of after the office visit)?  I could fast for fewer hours, we can review online and if something needs further action, then we do it.  Could I fill out screening questionnaire and email it in?  Can she trust me to call if I am having an issue?  Can we decrease office visits to twice a year (with labs in between) unless something happens that warrants the visit?  Please know that I am not saying standard diabetes care is not necessary, but it isn’t law.  Let’s do what makes sense for each person.  We are all individuals with different wants and needs.  I want my goals for our visits to be addressed, so I will share them with her in my letter: to understand new treatment options, to learn about her other patient’s successes, to have access to lab tests, medications and pump supplies she must prescribe, and to be a "good enough diabetic" so I can live a joy-filled life. My goals are not to be judged, to be scared into “compliance”, to be a data point for reimbursement, or to be a perfect diabetic.  I really want her words of encouragement and support.  I want her cheering me on.  I want her education, experience, and expertise in my corner.  But I “must” do what I know is right for me.  I really hope she is willing to try something new.


As I was writing this post, I saw this from the Happiness Project.  Good stuff.   Give it a read.   Thank You for the coincidence <Godwink>!

Friday, March 6, 2015

You can lead a horse to water.....

.....and he will drink when he is thirsty.  

Ever struggle with trying to get someone to do what you want them to do?  Wouldn't the world be easier if the darn "horse" would just drink!? But maybe the horse isn't thirsty, maybe he is angry and wants to get back at you, maybe he is afraid of what is lurking in the water, maybe the last time he drank it tasted bad, maybe he can't see the water, maybe he is too tired to drink.  Whatever the reason the horse IS the one who decides to drink.   We may think we are getting him to drink, by pressure, fear-mongering, enticement, education or other means, but in the end he drinks when he chooses.

This applies to many things in my life as both the horse and the leader of the horse.  I'll share a few and maybe it will ring true to you too.

Kids - trying to get them to get ready in the morning is HARD!  They don't want to get out of there cozy beds - especially after a snow day and the last day before spring break.  We have employed many tactics: yelling, threatening, enticing, cajoling, etc.  Today I let them decide (with a few parameters) and suffer the consequences.  The car was leaving at 7:35 and they were welcome to come as they were or figure out how to get to school on their own.  It was a 50/50 successful attempt.  They got it together in the last 5 minutes and it took all I had not to prompt them to do all their morning tasks.  We left at 7:37 - I caved by 2 minutes.  But I was proud they stepped up and they were the ones stressing not me.

Husbands - In this situation, I am the horse.  I have been a little off my game lately, in a funk, blue, introspective, call it what you will, but I just want to cuddle up with a blanket, read a book and step off the merry-go-round that is life right now.  He keeps trying to "cheer me up", which I understand is well intentioned, but I feel like he is pushing my head in the water to make me drink from the happiness bucket and I am just not thirsty!  His 'cheering' actually has the opposite effect and makes me pull harder in the other direction.  No one likes to feel manipulated; we all just want to be understood.  Stop pushing.  I'll promise I will get thirsty on my own.

Diabetes - about three weeks into my new CGM (continuous glucose monitor - it is a little device that is inserted into the skin/fat on my tummy - reads glucose every 5 minutes and sends it to my pump so I can evaluate which way my blood sugars are trending and manage them more closely).  I know I should be grateful for the technology that allows this life giving information to be provided to me, but I really want to toss the thing out the window.  Because it reads every 5 minutes, I have more alarms going off (beeps, buzzes, tweets and bells oh my!) to "help" me manage.  I know this is a good thing, but it has turned the disease that I have embraced for so long into a proper "pain in my ASS"!  Before CGM, I had a routine, all was well, and I was content.  You could rightfully say ignorance is bliss.  To be fair, it isn't the device that is the trouble, it is the emotions in me it brings out - frustration, fear, self-pity, anger, and others I haven't been able to name yet.  I feel the educated side of my brain pushing me to "drink" and the emotional side saying "stop pushing, I want to go back to my safe routine".  I am hopeful this internal tug of war will play out, I can work through the emotions and get back to normal.  I keep taking deep breaths.  Let Go.  Let God.

If you are pushing your horse to drink - stop it.  Connect with their emotions, understand why they won’t drink and give them back control.
If someone is pushing your head under water – explain why you don’t want to drink,  ask them to back off and know you have the ultimate control.  Drink when you are thirsty.



Monday, February 9, 2015

Loving My Snake

I hate snakes!  They are creepy, crawly, slithery creatures with beady eyes and  forked tongues who crawl on their bellies with their face to the ground.  They hide away in dark creepy places ready to chomp, squeeze, or envenomate the unlucky who cross their path or look like lunch.  I hate them to the point of phobia - they just give me the willies! Gaa-Ross!

Imagine my reaction when I learned that not only had to touch a snake, but own one, care for one and keep one alive or I would lose my life.  That, my friend, is what getting a diagnosis of diabetes felt like to me. I got a snake and I had no choice in the matter.  I didn't want it, I feared it (years of nursing will do that to you - you know what it is capable of), and the thought of it repulsed me.  Yes, repulsed me.  I didn't want this.  I remember feeling pity for people I knew who had to bear such a burden and suffer with such a horrible plight.  Diabetes was creepy, scary, and treacherous, with sharp pointy parts, strict feeding habits and the potential to kill me.  How could I ever live my life with a thing I feared so much?

The thing about fear is that you can't stay in fight or flight mode 24/7.  Fear can be a great change agent for a while, but eventually you even get used to constant fear.  You get used to your snake.  I sort of got used to mine.  Some days I was so scared I did nothing but care for the snake.  Other days I left the snake to fend for itself and took a break from carb counting, finger sticks and portion control.  Neither extreme did much to make me a happy, well-adjusted person.  Being an ER nurse during this time, I saw "snake victems" every day.  Those unfortunate souls who hadn't managed their disease well or just by sheer bad luck were blind, missing toes and limbs, on dialysis, demented, crippled by stroke or heart disease, the list goes on and on. They didn't look happy.  I feared that would be me.  

My type A self eventually got so tired of not being the perfect diabetic with blood sugars normal every time.  I beat myself up for not being a better snake handler.   I didn't want the thing anymore and thought I would lose my mind as I swung between taking care of the snake and living my life as I wanted.  By the grace of God a co-worker knew a licensed professional counselor that had helped her and encouraged me to talk to her.  I ended up learning new ways to cope, new skills, and new ways of thinking.  I think the first "aha" moment was that the snake and I were one in the same.  It was now part of my life and I didn't want to hate part of me.  Hating anything is exhausting and depleting.  I had to learn how to love my snake.  To love me.  All of me.

The first thing was to get rid of the image of a snake thrust upon me (they still creep me out) and reframe my new reality.  I now think of diabetes as a child I need to take care of; a beautiful, younger, fragile girl who needs some TLC, good food, medicine on time and a lot of understanding.  It is much easier to care for that aspect of me and love her.  That child has taught me many things, among them patience, acceptance, and tolerance.  Most importantly, she taught me that I was worth it, my life is worth living, and I can chose not to be a victim.  Life is much easier now that I am a caregiver and calling the shots (pun intended!).  I am happy to hold her hand, test her blood sugar, feed her well, and enjoy the life we live together.  It no longer feels like a burden, I don't hate anything about my life (well maybe when I don't have internet connectivity!).  I can actually say I love having diabetes, because I can't hate a part of my life.  It is just who I am and I accept that.


Tuesday, January 27, 2015

Diabetes and depression is normal???

I am in the market for a new insulin pump and decided to use my twitter account to see what the world had to say about the pumps on the market and diabetes in general.  I happened across a post about the prevalence of depression and diabetes.  It suggested patients with diabetes need mental health services and more involvement with the Psychiatric community.  Frankly, it ruffled my feathers!  I was offered antidepressants years ago when I struggled with the reality of this life long ride with little chance of getting off.  I passed.  I ended up seeing a therapist who helped me build coping skills and peel back the onion a bit to understand how my life up to that point was influencing my day-to-day happiness.  Turned out diabetes wasn't my problem.  It was how I managed problems.  A lifetime of avoiding conflict, trying to please everyone and not facing some hard realities,  left me unprepared to deal with this situation that I couldn't run from, couldn't do perfectly and I was letting define my worth as a human being.  Learning that my blood sugar readings were not a judgment of my character, that I could still dream and do things I wanted, and that if my diabetes management became inconvenient for people, then so be it.  I was worth the effort.  You might call that situational depression, but I refuse to say I have mental health issues.  Who wouldn't feel a bit down when forced into a new way of life, one that you had no choice in?

I started to do a bit more research and came upon what I believe is an "aha" moment for the medical community.  When a patient is diagnosed with a chronic illness, their previous way of life dies.  It is a loss they must mourn.  It doesn't mean their new life can't be wonderful, but it will be different and to fully move forward they must come to terms with this loss.  They must grieve.  There are five stages of grief: 1- Denial (not me!), 2 - Anger (why me!), 3- Bargaining (maybe it’s just temporary, the diagnosis is wrong, I need a second opinion), 4-  Depression (this sucks - my life is over), 5 - Acceptance (this is my life and I will make the most of it).

Look at stage 4 - It's depression!  A normal part of the grieving process!  Not a mental health issue or a psychiatric problem that requires medication to placate your emotions.  Just something we all go through, but sometimes we need a little help figuring how to get through it.  What if more people went through grief counseling to understand their loss, deal with their emotions and come to peace with their new situation?  From my years at the bedside, I would say there is a large majority of patients stuck in denial, anger, and depression.  We medical folks might even label them as "non-compliant” (I despise that term BTW).  If they are stuck being mad, hating their life, feeling helpless or avoiding their reality all together who would expect them to do what is necessary to manage the day to day care that diabetes requires?

I am confident the therapy I have done over the years to learn about what makes me tick has done more to control my A1C than any amount of diabetes education ever could.  I have grieved and long ago accepted this gift that is diabetes (yes I said gift - more on that another day).  It has taught me more than it has ever taken.

Be happy

Friday, January 9, 2015

Where does your truth live?

This morning I had “monkey mind”.  You know when you have a zillion thoughts bouncing around your head and it makes you anxious?   I was trying to slow down my thoughts, focus on something, and relax.  Somewhere in that process, I had a little epiphany and have to share.  It is this: We see in our minds.  We feel in our heart.  But we know in our guts.

As my mind wandered, ideas bounced around, and thoughts floating by, I realized I was watching them as I tried to slow them down.  I suppose I think in pictures and “see” my thoughts in my “mind’s eye”.  I even had a choice of which I honed in on, which came and went, and they constantly changed.  Heck, I can even think opposing thoughts at one time and believe in both!  If I am seeing them, then they can’t be me – right?  If they come and go, they can’t be my truth – right?  This is the scary part, I pride myself on making good decisions based on what I think about something!  Don’t we all make decisions every day based on what we think?  And those thoughts can change moment to moment.   Our vernacular even illustrates it with “fleeting thoughts” or “mind games” or “I changed my mind”.  Ummmm,  maybe I don’t want my mind calling all the shots.  So where else?

Going a little deeper - what about my heart?  When I feel things like love, joy, sadness, guilt etc.,  I literally feel them and experience them in my chest.  Are these feelings my truth?  Should my life be about what my heart feels?  I have less choice on what I feel as it tends to relate to the people, places and things going on around me - external things, but there is a choice.  One can have a “change of heart” or “get their heart broken” or literally be “heartless”.  Thinking the heart may not be such a reliable guide.

So one-step deeper and we are in the guts.  Way down in the belly where we can’t change the truth and there is no choice.  You have a “gut reaction” and there is no time to study it.  It just is.  When you “know it in your guts”, there is no denying it.  Have you ever said “I knew in my gut it was the right/wrong decision” and it was?  I think our hearts and our minds spend a lot of time and energy trying to keep us from “following our gut instinct”.  There are a few things” I know in my gut” that I am going to spend a little more time on.  And a lot of things flitting in my head that are going to have to take a back seat!  Maybe your gut is telling you something – something true that you have been avoiding.  Maybe you should listen?  You know the saying “No Guts, No Glory”.


Monday, January 5, 2015

There has to be a better way!

So I just returned from my quarterly visit to my endocrinologist and I am frustrated - again!   There has to be a better way!   

I have been a type I diabetic since I was 26 and I wear an insulin pump.  I am a freak of nature, as to my knowledge I am the only one in my large extended family ( 6 siblings, 16 cousins, and too many second cousins and cousin’s kids to count) that developed type I.  I was working in the ER when it all came down.  Most likely related to something viral I picked up.  I had a weird rash and fever about 6 months before I became symptomatic and the “boom” there I was doing injections.  Diabetes has taught me many lessons and good lessons.  It is not something about my life I hate.  That is a bitter emotion, so instead I embrace it, hold it close, and care for it as it were another child.  It is my responsibility.

As a registered nurse, I fully understand the impact of diabetes.  In my career, I have worked on a med/surg floor caring for diabetics, in Medical ICU caring for diabetics at their worst and in the ER caring for the newly diagnosed, those who poorly managed their illness and those who had accidents when low blood sugar got the best of them.  I have literally seen it all.  So I get it.  I go to the endocrinologist every 3 months, get my eyes checked annually, and do all those other things on the "Check list for Diabetics".  I test my blood sugar 4-6 times a day or more if I feel weird.  While we were trying to conceive, during the pregnancy and while nursing, I was super careful and checked my sugar every day at 7, 9, 11, 1, 3, 5, 7, 9 and 3 am.  My numbers were equivalent to those without diabetes and my kids had no complications.  Yeah!  We eat pretty healthy without being obsessive.  I probably could work out a bit more than I do but I have gotten myself back in the yoga studio the past few months.  And I am happy to say, So far, So good, No complications!!  I hope I am what doctors would label "compliant", one of the good ones.  

So why is it after every visit to a provider, I feel so beat up and defeated?  I leave feeling like I am failing at my diabetes management, that I must be the worst patient ever and I am doomed to suffer all the complications that are just waiting to pounce on me.  

It starts with the waiting.  In my corporate world, if I had an 8:30 meeting, it started at least by 8:40.  It would not be acceptable to be 60 minutes late.  I feel devalued when I am made to sit for no good reason.  I was the first appointment!  How could you be that far behind?  Nevertheless, in healthcare it is the norm.  Patients wait.

I eventually get back to the exam room and answer the required screening questions (Thank you Meaningful Use).  Today they added Ebola risk along with verification that I haven't started smoking in the 3 months since my last  visit (LOL!), my flu shot is up to date, my BMI is recorded and many other important tidbits that have no bearing on how I feel or what I need, but they are required.  Meanwhile, the clock is ticking, I have a list of things that I need from my provider and I have to make sure we cover it in my allotted time.  1) My insurance no longer covers the brand of insulin I have used for the past 20 years - need a new Rx.  2) My insulin pump is out of warranty and I need a new one - curious about new pumps on the market.  3) I need some labs drawn for another doctor - any way we could do it together?  4) Anything new on the diabetes front I should know about?

But first, we do the obligatory review of all my blood sugar readings that have been downloaded from my pump.  "What happened 2 weeks ago on Thursday - your number was a little high?"  Hmmmm, I really can't remember.  (Can you?  What were you doing 2 weeks ago on Thursday?  Who knows this?!!!)  When I say I am not sure, they eyebrow of my NP goes up as if to say, "Aha! We caught you!  And you have nothing to say for yourself".  It proceeds as she points out all the "wrongness" in my numbers.  Never mind that most of them are good and my overall average says I am within target range, only those out of range are addressed!  On my last visit, I created a log of everything I ate, activity, mood, glucose readings, carb intake etc for 2 weeks, so I could answer her questions.  She still only circled the numbers she didn't like and commented she “Didn’t know what to make of all this information".  Sigh.......

So we complete the review she asks me if I want to change my pump settings.  "Sure" I say, "what do you suggest?”  She counters with "What do you think?" In my head I say “What I think is that I am here for your opinion and advice.  You help me!”  We end up doing nothing and when I get to the parking lot - I adjust them based on what I think will work.   Frustration #1.

So on to my list of stuff!  She hands me my new prescription.  "What should I know about this?"  I say.  "It is just the same," she says,  "Nothing new".  Well to me it is new as I have been on the other brand for a long time.  So I will google it when I get home and see if I can find others who have switched and noticed a difference.  Frustration #2.

Now to new insulin pump.  She hands me a packet of literature from the manufacturer (same as what I have already read on their webpage) and tells me to read it and call the company rep who can answer my questions.  I ask for her opinion about her other patient's experiences and she says she isn't allowed to share that, as it would be unfair to the pump companies to promote one over the other.  Really?  Being fair to the pump company is more important than sharing real life experiences among your patients?  She tells me not to worry, as the pump reps will be fair.  Yeah - right and I have some swampland you might be interested in!  I told her I would try to find some info from other pumpers online.  Her advice "Don't believe everything you read online".  Once again, I am left to my own devices to figure this out.  Frustration #3

Finally my lab work.  I have several specialists in my medical arsenal and my wellness doctor likes to have my labs done in advance so we can discuss during my visit.  (Brilliant idea BTW!).  I need to get them done this week, so let's get two providers tests done with one needle stick - right?  No such luck,   My NP wasn’t willing to add the wellness labs to her lab slip and wanted me to move some of the duplicate labs to her lab slip (which would require me to contact my wellness doctor for a new order sheet).  Suffice to say I had 2 separate lab draws 45 minutes apart at labs that were 2 miles apart.    Frustration #4

As far as anything new in the world of diabetes management, she had nothing.  I go every 3 months, it is always the same, and nothing is new.   Sigh...........I will keep checking online.

I leave somewhat dejected,  defeated and very frustrated.  When I could have used a cheerleader or an advocate, I get a critic.  If you look for a person's missteps, they are easy to find, especially if you have a chronic illness.  I really want someone to tell me, "Keep on going!  You are doing great!  There is hope!”  But not today.  So, as I have done many times in the past, I try to shake it off, take matters back into my own hands and be my own cheerleader.  Take a deep breath and try to rise above my frustration and disappointment.  Because at the end of the day it is my responsibility, my “child” to care for, and I will do what I can.

But what about all those people out there who haven’t really accepted their situation, who don’t have 30 years of nursing under their belt and aren’t comfortable enough to take matters in their own hands when it is necessary?   It seems our system has become broken, fractured, siloed and frustrating.  Even though we have the best medical care in the world, it has become less and less about helping a patient to live their best life and to be well.  It is now about data collection, checklists, finding physical symptoms that can be treated and billed among a sea of specialists.  There is little concern about the overall quality of a patient’s life, their ability to deal with the emotional toll that is paid, or the how the nuances of their life affects their ability to manage illness (or wellness).  The body is assessed for symptoms of brokenness and disease and thusly prescribed treatments, but the mind and the soul are not included.  So many people walk around "Band-Aided", but really not whole.  Struggling, when they shouldn't need to.

There has to be a better way!  Could it be possible, that there is a way to coordinate a plan that includes not only medicine , lab tests, and traditional western health practices, but addresses emotional health, nutrition, family considerations, work/life balance, discovery of inner strength so you can do what needs to be done, and peace in your spirit to minimize the ever present effects of stress in our lives?  I am not sure of the exact recipe to make this happen but I think it is a quest worth pursuing.   And it doesn't start with education.  If so, smokers wouldn't smoke,  no one would be overweight and we would all exercise 30 minutes every day.  We all have been educated about these things.  So why don't we do it?  Personally, I know having someone cheering you on who thinks you are "worth it" is far better medicine than having someone pushing you down and making you feel "less than". 

I am interested in connecting with anyone who has interest or expertise on this topic.  I think it is a service that people need.   Feel free to share my blog or send them my way!