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!

Patricia