New Beginnings.

new pump

I’m looking forward to fresh beginnings today, as I just started with my new Medtronic MiniMed pump, which was overnighted to me to replace my older pump.  I know that I have been vocal regarding pump issues, but as with anything diabetes-related, the problems are incredibly complex and multifaceted.  While there will always be the occasional bumps in the road when it comes to technology that steps in for a malfunctioning pancreas, the sheer number of issues that we have experienced of late insinuates that there is another culprit always lurking behind the scenes: diabetes being its menacing self.

The repeated issues are not a direct result of anything that I am doing wrong particularly, nor anything that Medtronic intends to happen.  We are all in this fight together, and no one likes bad pump days.  Period.  We all just want to feel healthy each day.  I would like to especially thank Angie of Medtronic who has spent many hours on the phone troubleshooting with me and has been incredibly kind and patient through out this process.

Praying for a smooth transition over to the new pump…  I wish all of you other pumpers and non-pumpers a drama-free weekend when it comes to diabetes.  We’ve got this.

Type 1 Diabetes: Welcome to the 1%. (Rant Version)

This piece was previously bookmarked as a page reference on the blog in order to enlighten those readers who may not know much about type one diabetes.  After “word vomiting” all of my pent up emotions about misconceptions regarding the various types of diabetes, I realized that I needed a simplified, statistical page reference on the blog, and that I should retire the gushy feelings for a blog post.  So, here is the recycled “Rant Version” of the 1% for those of you looking for some diabetic attitude to read with your morning coffee.

In 2012, the population of America was almost 314 million people.  According to the Juvenile Diabetes Research Foundation (JDRF), there are about 3 million type one diabetics in the United States.  Crunching a few numbers illustrates that type one diabetics are a rare breed indeed; we comprise less than one percent of the U.S. population. 

If you are not type 1 diabetic or a close family member or friend to a type one diabetic, you may think that your education from the mainstream media in regards to diabetes is sufficient.  Newsflash: it’s not.  Diabetes is incredibly complex, and many reports and articles, quite frankly, miss the mark when portraying the disease.  I am eagerly working towards a Master of Science in healthcare administration degree, and my studies have included taking public health courses at the graduate level.  While I do not officially have those initials tacked to the end of my name quite yet (I can see it now- Very Light, No Sugar, Master of Science- okay, sorry!), I do know a thing or two about chronic disease due to my education.  I also have 23 years of personal experience as a type one diabetic, and I have a family member with diabetes as well.  In addition, my fulltime job in a healthcare-related field has allowed me to observe other diabetics’ stories.  If that unofficial transcript does not make you trust my judgment in discussing chronic illness, allow me five minutes to explain diabetes in simplified terms for this epic rant of a blog post, please.

Diabetes comes in many shapes and sizes.  It affects the young, the middle aged, and the old; the overweight and the thin; the black, white, purple, green, yellow, blue, and so on.  It places an unjust burden on people who are not only diabetics.  They are also parents, grandparents, grandkids, siblings, daughters, sons, cousins, friends, coworkers, race car drivers, actors, entrepreneurs, advocates, and much more.  Most importantly, they are all human beings who did nothing to “deserve” the amount of suffering that they endure each day as if it were some sort of punishment meted out in a courtroom, with society residing as the judge.

Some women encounter gestational diabetes with pregnancy.  LADA, latent autoimmune diabetes of adults, is similar to type 1 diabetes but with a later onset in life, in layman’s terms.  The diabetes that you often see in the media is type 2 diabetes.  Type 2 diabetes is characterized by insulin resistance and difficulties metabolizing glucose, but the body still produces some insulin.  According to U.S. News, one in eight Americans is diagnosed with type 2 diabetes, and evidence shows that many others go undiagnosed.  Clearly, these figures do not represent 1% of the population, as type 2 diabetes is quite common in our country.

I am type 1 diabetic, not type 2 diabetic; I can only speak from my own perspective.  However, I am going to defend the type 2’s for a moment here.  They get a bad reputation in the media, which critiques them as being overweight and “lazy” about their health.  While lifestyle may play a role in some cases of type 2 diabetes, it is not the only factor.  Genetics, the environment, and many other issues come into play to set the stage for the onset of type 2 diabetes.  The next time you catch yourself blaming a type 2 diabetic for his or her health situation, take a second to realize what you are really doing: rationalizing.

Society is prone to this.  It is easier to blame the rape victim for drinking too much or wearing a short skirt than it is to mentally process that one’s mother or sister could just as likely be that randomly-selected victim.  It is also easier to blame food for type 2 diabetes than it is to admit that we have many barriers to enjoying healthy lives in our society today.  Have you never had a piece of cake in your life?  How about a potato?  Potatoes carry a much larger load of carbohydrates than a half of a cup of ice cream does, for example.  Carbohydrates raise blood sugar.  If diabetes was so cut and dry, as in “Eat too much cake and you will get diabetes,” well, we would all be diabetic.  Give everyone a break, please!

Type 1 diabetes is much more rare, as evidenced by the 1% fact previously discussed.  It is caused by an autoimmune attack on pancreatic islet cells, causing insulin production to short circuit and eventually to stop altogether.  Type 1 diabetes is not caused by ingesting too many cookies.  Research indicates that the “perfect storm” of factors, to include genetic, viral, and environmental components, may be responsible for type 1 diabetes.  No matter the cause, diabetes sucks!  What also sucks is hearing that it is your fault in society’s eyes on a regular basis.  Paula Deen diabetes jokes and the like are thrown in our faces day in and day out.  When you have endured hundreds of thousands of needles to manage a disease that never rests over the majority of your lifetime, it is beyond frustrating to have diabetes minimized by society in such a fashion.

As I stated, my personal experience involves type 1 diabetes, so that is what I will describe here.  The goodness that stems from diabetes is seen in the wonderful people that you meet along the road in your health care management.  The other diabetics in the online community, patients at the diabetes clinics who understand exactly what you go through, doctors and nurses who dry your tears on the bad days, and friends and family who are always willing to lend a hand whenever they can- these are the people with whom diabetes has blessed me and other diabetics; they are the pillars of strength whom we rely on.

But the reality is that no matter how strong our army is right now, diabetes is the monster that never pauses to catch its breath.  Every bite of food consumed can impact a type 1 diabetic’s blood glucose.  Those 5 chips I had at the office party?  Yup, they will impact my blood sugar, sometimes at dangerous levels.  That short walk to my car after a party?  Yup, now my blood sugar is dropping.  Traveling?  Darn, I need to pack an entire suitcase full of medical devices and medication to sustain my life for a few weeks.  If that luggage is stolen at the airport, my life is immediately endangered.

You think that I should “control” my diabetes better?  Every day we wake up fighting a constant battle.  Insulin is not a miracle drug; it is not a “one size fits all” pill.  Insulin dosing for type one diabetics is an educated guess taken subcutaneously each time around.  What works on Monday may completely backfire on Tuesday.  Maybe you have a head cold coming on and your liver is furiously releasing sugar to fight the illness?  Now you may have to triple your insulin dose.  But oh wait, that was too much and now your blood sugar is crashing.  There is no crystal ball that tells us the perfect insulin dose to take at this point in time.  It is a trial and error dosing system.  And once you find something that works, diabetes changes its mind within a few days.

These are the calculations that never go away; they are sometimes minute to minute or hour to hour, and they are definitely day to day.  Until there is a cure I will never put a bite of food in my mouth without thinking over such factors to determine an insulin dose.  This disease is the farthest thing from a joke.  Trust me, we all wish that it were as funny and as manageable as the media makes it out to be.  I wish with every ounce of my soul that a cure would take away this never ending struggle for the parents of kids with type one diabetes, for the non-diabetic siblings who do not receive as much attention as their diabetic counterparts, for the toddler screaming in pain at injection time, for the young adults struggling to keep brave faces while showing up to work every day to deal with the normal stressors of life on top of the diabetes headaches.

Please, please take a moment to educate yourselves about diabetes and to share this knowledge with others.  Until we change our mentality about diabetes in this country, diabetes will continue to plague us, to take loved ones from us, and to be a mental and physical burden for so many people who do not deserve it.  The good news is that it is within our power to change this public perception.  It starts with each and every one of us.  Let’s get to work.

Thank you

Sources:

http://health.usnews.com/health-news/news/articles/2013/02/20/1-in-8-americans-diagnosed-with-type-2-diabetes-poll

http://jdrf.org/about-jdrf/fact-sheets/type-1-diabetes-facts/

http://www.mayoclinic.org/diseases-conditions/type-1-diabetes/basics/definition/con-20019573

http://www.mayoclinic.org/diseases-conditions/type-2-diabetes/basics/definition/con-20031902

Are you there, God? It’s me, Very Light, No Sugar.

Did you just laugh?  Because God did.  Or I like to think He did.

I know God is there.  I know people from the diabetic online community are there, partly because I tweeted that it was 3:00 am and I was awake and frustrated with diabetes and I knew that people from the #doc were up, too, and it got a few favorites rather quickly.  It’s funny how those simple gestures can make one feel less alone.  Excuse my rapid-fire Twitter vent session following that tweet, but I’m tired and I’m aggravated and maybe this blog post should be called “My Stream of Consciousness Regarding Diabetes at 3:48 am is actually ‘Very Dark, Corny Humor'”?

Well, this is real.  This is what those #FreeDiabetics pictures portray without sugarcoating it.  We all want to be free and we deserve to be free.  This is the side of diabetes that society doesn’t often see; this is the suffering that I wish none of us ever had to endure.

I’ve been on the phone with diabetes companies all week trying to sort out insulin pump problems that I am having.  I owe ya’ll a blog post about that, I know.  Consider this the precursor post.  We are troubleshooting every element to see where the problem arises.  Is it the infusion sets?  Is there a product defect?  Is the pump functioning properly?  Is the reservoir releasing insulin correctly?  Am I inserting into scar tissue?  Muscle?  Am I sick?  Am I stressed?  These are the constant questions when something goes awry with diabetes; rarely is the culprit caught red-handed.

Ketones are my nemesis.  They make me buckle at the knees and revert to being a whiny, miserable child.  Even small amounts of ketones send me straight to bed.  Unfortunately, with all of these issues going on in the background, ketones rear their ugly, ketonic heads quite often nowadays.  It is a testament to how great my nurse is that she is one of the only people who I can definitively tolerate in these moments of weakness.  Well-intentioned friends and family members are unjustly used as scapegoats for my anger when ketones appear.  It is easier to allow a nurse or a doctor to tend to the invisible wounds.  Alas, they are in Boston and I am in the Providence area, so it’s Ally versus the Ketone Crusader at what is now 4:00 am.

I struggle with taking in a lot of carbohydrates during the day.  Years and years of traumatic experiences- from inadvertently taking too much insulin to having a bent pump cannula while eating pizza which led to a blood sugar above 500 on my birthday, etc.- have led to a “fear of extremes,” as my doctor put it.  We’ve all been there to some degree.  But I am being honest with you all in that I am somewhat stuck there right now.  I go to the doctor all the time to work on this.  Part of the process comes with trusting my insulin delivery mechanism.  Let’s narrow down the potential problems list until we find something that works in terms of insulin pumping, and then we have to work on ingesting more carbs and properly dosing insulin once we can be confident that insulin is delivered.  Back to the basics.

I do not want to go to bed with my stomach growling anymore because I am afraid of eating a big dinner on top of a potentially-faulty pump site.  I promised my doctor last week that I was going to try, that I wanted to do this.  “I do not want to go to bed hungry at twenty-six years old, and that’s one thing I can commit to changing,” I said as she smiled and nodded, proud of our progress.  But tonight I did go to bed hungry.  I had eaten a larger than usual dinner (but still not large enough) and changed my pump site afterwards, while then babysitting my blood sugar as it slowly but surely went up and up.  My stomach churned as ketones formed, but I convinced myself that they were not there and went to bed, ignoring the persistent emptiness in my gut by sleeping it off.  Later I woke up with a ketones level of 1.2, probably a combination of my body burning fat for fuel in its hungry state as well as a bad pump site…  again.  This happens on a weekly basis, hence the ever-growing bags under my eyes.

Back to the drawing board.  My goal tomorrow (well, later today at a normal hour) is to eat more carbs and take a “perceived risk” by dosing more insulin with my spiffy new pump site once I wake up in a good range and know that the site is doing its job well (fingers crossed).  I would greatly appreciate it if anyone who has gone through similar trials with insulin pumping and low carb intake would offer advice, whether in comments here or in private messages.  (See Contact page on the blog).  I know that I’m not crazy, that there truly is a problem going on even though I feel like a broken record talking about pump site issues, that someone out there has to relate to this somehow.  Please, help a diabetic Sista out.  If I can pay it forward in any way at a later time, or even if this post resonates with you in some manner, my work here is done for 4:30 am.

Time to go count diabetic sheep.  Goodnight, #doc.  And thank you for listening.