Broken Record.

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Disclaimer: Before we really dive into things, you should know that this is a lengthy post, and it may not be all rainbows and sunshine.  Read at your own risk.  I personally hope that you are feeling a bit adventurous as a reader today, though. 🙂 

When my mother was in second grade, she was running through the auditorium and accidentally dropped her Bambi record on the ground.  It shattered into tiny pieces, and the janitor swept them up and gave them to her in a plastic bag.  She walked home sobbing and was heartbroken when gluing the pieces back together did not make the record work again.

If I told that story to a child today, she would laugh in my face and say that my Mom should have used an IPod instead.  Fair enough…

Well, I have become a broken record myself.  I know it and everyone else knows it.  I don’t even want the attention.  I just want the simple act of screaming my lungs out when I’m angry, and it usually comes disguised as some sort of social media rant about stupid drivers on the way to work or something else that is irrelevant.  I have lost friends over it, and I say this to my doctor all the time: Although diabetes is to blame for many bad moods, at the end of the day, I still have to answer to God and to the people in my life.  Diabetes isn’t a good excuse, then.  I can still be a respectful human being despite diabetes-induced mood swings and frustrations, and I need to work on this. I’m trying, which has to count for something.

But it is also very difficult to describe to people what stubbornly high blood sugars feel like and what a physical and emotional ass-kicking it is when nothing you do works to solve the problem. This is my reality on many days, and I imagine some of you reading this understand exactly what I mean. I hate to say that this type of suffering has changed me, but in some ways, it has. I am always on edge about how I will prevent and treat these highs, and I don’t remember the last time I just let my guard down and enjoyed the moment- probably because I was nursing a high blood sugar back to health in the background of that moment, with everyone around me remaining oblivious.

Many people have “yessed” me to death in regards to my insulin pump struggles, including family members. “Are you really just going to say ‘I know’?!” I scream on the phone with Mom. I get upset with this response, but I also understand it from a psychological perspective. There is really not much that others can do to help. They are not the ones up all night changing pump sites any more. They do not have to go to work exhausted and seeing spots because of high blood glucose. As much as they try to “get it,” they can’t completely comprehend what it feels like.

Some others have told me to toughen up or that it’s in my head, including fellow diabetics. I have a much more difficult time swallowing humble pie at that point. That advice adds nothing to the equation; it is the same as telling a depressed person to simply be happy. If life were this easy, there would be no depressed people, and there would be no sick diabetics. This is a “cop out” sort of commentary. It is much more beneficial to the friends, patients, coworkers- whoever is struggling- if we assure them that we believe them and that we are hopeful that they will find solutions. Dumbing down the problem by dismissing it as “it’s in your head” only angers that person. And guess what? It’s probably not in his or her head, especially if the person involved is a type 1 diabetic. We know our bodies better than most people do, and we know when something is awry. If you are a type 1 diabetic who has been lucky enough to avoid insulin pump problems, well, please cut us some slack that we have not been as fortunate.

Anyway, this is the blog post that I’ve owed you all.  I am BEYOND frustrated.  Forgive the length of this post, but I have to get all of the information out there. Bear with me while I go over the details, and then I really, truly need your expert advice, especially before I meet with a pump representative and my nurse for a troubleshooting appointment in two weeks.  I pinky promise that if I can ever help you in return, I will do whatever I can to pay it back, or to pay it forward. If you’re participating in the DOC, then I already know that you’re an expert, so please, please chime in here if you can help.

I am 26 now, and I went on a Medtronic MiniMed insulin pump about ten years ago while in high school.  It immediately changed my life for the better.  No more shooting up insulin doses in the bathroom stalls, no more limiting my food intake, and so much more freedom.  As my nurse would say, I had “virgin skin” that had never been pierced by insulin pump sites, and my absorption was great.  Once in a blue moon I would experience a technical issue, but this happened twice a year or so.  (I understand that an insulin pump is technology and it is not perfect.  Although if I could go back in time, I would erase the failed pump site on the one day of my life where I decided to try an iced mocha sugary drink thingy from Dunkin’ Donuts…).

Anyway, while in college, after my body experienced some wear and tear from the pump, I started to have site issues more frequently. On my twentieth birthday, I indulged in a pizza dinner with friends and had some ice cream for dessert, only to discover a bent cannula afterwards and a blood glucose reading of over 500 mg/dL. It’s my party, and I’ll cry if I want to. I also experienced some severe lows in which the whole world felt like it was falling down around me.  I was spooked- by the highs and the lows.  I had to figure out a way to stay between the lines- not too high and not too low- easier said than done with type 1 diabetes, as we all know.

According to my doctor, I literally experienced trauma from the “extremes,” the severe highs and the severe lows. This mental trauma has changed my reactions to things, has made me live a hypervigilant life in order to survive.  My brain was in fight or flight mode when these adverse situations happened in college.  I flew away from carbs.  If I ever have a kinked cannula again, at least I won’t make the mistake of eating pizza on top of it (as if anyone knows when they have a kinked cannula). If I eat salad and protein instead, maybe my sugar will be 300 instead of 500 if that happens.  And so I lived, for many years.  Until my body started to scream that it needed fuel, and it burned fat in place of carbs, and I saw ketones quite often.

I still struggle with working an adequate amount of carbs into my daily diet and with taking a more liberal amount of insulin, but I am trying. I have a phenomenal doctor who doesn’t make me feel stupid about my fears.  In fact, she makes me feel brave for showing up at her office to fight those fears.  There are some days where we are literally high-fiving and prancing around the room because I ate a half of a sandwich when my sugar was already 250 and I took quadruple the amount of insulin that I would normally take, which is usually still not enough.  But it is one giant leap for Ally of Very Light, No Sugar, so we celebrate those moments heartily.

What is making this process even more complicated is the fact that the majority of the time, I experience some sort of problem with my insulin pump and we cannot trust in the delivery mechanism for insulin. So, not only am I petrified of highs and lows, but I am constantly questioning whether the pump works or not.

I want to go on the record and say that I really like Medtronic MiniMed as a company. In my ten years of experience with them, the customer service has been top-notch.  If I need a supply, it is at my door within a day or less of placing a phone call.  Their phone representatives yield calls at all crazy hours of the night.  Their PR team does a great job of answering questions.  Angie, in management, has spent hours on the phone helping me investigate my pump issues.  I will not forget how she moved me to tears with a simple question a few weeks ago: “If you’re putting the pump site in your back, and you’re already on the thin side… well, doesn’t that hurt you…?”  Um, yes.  That part of it gets lost in the shuffle when you just want to absorb the medicine going into you, but the human connection was there.  She was clearly upset that I was in pain.  As was the Medtronic representative at my diabetes clinic who helped me with various sites last year and was a wealth of knowledge regarding all aspects of insulin pumping.  I’ve said it before and I’ll say it again: Medtronic doesn’t like bad pump days just like I don’t like them.  We are all in this for the greater good of living well with diabetes.  Alas, we have to fix these issues, for the sake of my health and for the sake of current and future insulin pumpers who may experience similar issues.

Anyway, I started off with the Quick Set infusion sets years ago, but had to switch off of them due to kinking cannulas. The Silhouettes, which have a larger cannula, worked slightly better, but my sites were so irritated that a nurse, upon seeing a picture of one site in my phone, in no uncertain terms told me that I was never to use them again.  I was allergic to some of the material, making absorption of insulin questionable due to the agitated areas.

The Sure T site, which uses a stainless steel needle that inserts into the skin and looks like a thumb tack, has been useful in that it has cut out the kinked cannula problem. Because the needle stays under your skin and you need to be able to disconnect the pump for various activities like showering, there are two attachments to the Sure T.  See photo above; disregard “love handles,” please.  One long tube connects to the reservoir in the pump.  There is a small needle at the end of this tube.  This small needle clips into a connector site, which is attached to a smaller tube running down to the needle under the skin.  To remove the pump, you detach at the main connector site.  I have had a few bizarre occurrences where the sites were snapped together but insulin was pooling at the connection instead of going through the smaller tube and into my body through the needle, causing me to spike high ketones.  Medtronic promptly replaced all of those lot numbers for me and is investigating the issue.

I am also relatively thin, so it is hard to find areas with enough fat for the sites. I never used to experience much pain with site changes, but now I feel significant shooting pains, sometimes lasting for days and making me nauseous.  My health care team has retired my stomach for sites to give it time to heal.  I sometimes use my sides and have experimented with the lower back but have not had great results so far.  Upper butt works okay but tends to be quite painful.

I feel like I have seen the whole spectrum: from pain-free, easy site changes years ago to painful, troublesome sites in recent times. I know that I am not crazy, that I am experiencing problems that are really disrupting my quality of life.  With each bad site change, I am often on the couch chasing ketones away all day and taking manual injections on top of changing out problematic pump sites.  It is no way to spend one’s mid-twenties on a weekly basis, and I want this to change so desperately that I am willing to try pretty much anything.

I would like to continue pumping because of the fine-tuning that the pump allows. I can take my mini-bolus at the beginning of dinner and bolus more ten minutes later if I go back for seconds.  I can tweak my overnight basal rates, etc.  While I do not remember seeing ketones often with multiple daily injections (MDIs), I do not like the thought that once that insulin is in you, it’s there for the day.  And if you need to bolus, it is a bigger deal to get the dose right on the first try so that you do not have to take more shots later on.  Socially, it is simpler for me to press a few buttons on a pump while in grad class late at night than it is to go to the bathroom to take a shot.

My final issue is not with the pump itself, but with the insulin. I have used a pump for years; there are usually a few pesky bubbles which can be flicked away and forgotten about.  But lately, it’s like the insulin is feisty before it even gets inside the reservoir.  See photo above.  Millions of tiny bubbles shoot around my Humalog bottle.  I have tried new orders of Humalog, attempted using different bottles, etc.  Nothing changes the presence of these bubbles.  When I fill the reservoir, I flick out the big bubbles, but usually a few tiny culprits hang out by the top of the reservoir and refuse to move.  Over time, they expand, blocking proper insulin delivery or causing some air, instead of insulin, to be delivered.  My sugars will run high for hours until I figure out the issue.  I recently gave Novolog a try, but the first two attempts yielded big bubbles as well and my sugars were high for days.  It is as if the bubbles compromise the efficacy of the insulin, and it is so not cool.

As noted earlier, I am meeting with my nurse and a Medtronic representative in a few weeks to go over all of this and to walk through the process with them to see if we can identify the issues. In the meantime, I ask for your prayers and your advice.  Some of you have reached out to me about the bubbles and you have made me feel so much better in knowing that I am not a lunatic, although I truly wish that none of us had to suffer through these circumstances.  A lot of times people are quick to blame the user.  Maybe there is user error?  If so, I’m willing to admit it and move on.  I just want to feel healthy again and to regain the quality of life that the pump originally afforded to me.

I apologize for the broken record-ness, but I am fighting for my health here.  It is disheartening when you are making big strides in your diabetes management to tackle your fears, yet something as simple as a few air bubbles is wreaking havoc on your control.  I am incredibly concerned about the toll that this is taking on me physically and mentally, and about the burden it is placing on my family and friends who want to help but don’t know how.  Perhaps you hold the answer, DOC.  In fact, I’m sure you do.  What works for you?

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