ketones

Spare.

Spare.

Dictionary.com defines the verb as “to give or lend, as from a supply, especially without inconvenience or loss.”

At that rate, why wouldn’t we spare roses this February, and perhaps all year long?

The premise is simple: click here, donate $5- the cost of a rose you may normally give to a loved one on Valentine’s Day (or, set up additional monthly donations if you can!), and save a child by providing life-sustaining insulin through your donation.

If you are reading this blog post from a cell phone or a computer screen, chances are you have $5.00 to spare.  If you do not, that is okay, too; instead, please help to spread the word about #sparearose.

What is $5.00 worth?

-one medium coffee and one donut from your local coffee shop

-half of a movie ticket  (What use is that?!)

-crappy red wine and a headache you don’t need, anyway

-an overpriced bottle of water at a sporting event

 

*****-And oh, yeah, A LIFE!!!!!!!!

 

Close your eyes and think of a time when you did not receive a viable amount of insulin for a few hours.  We have all been there: a kinked insulin pump cannula, diabetic ketoacidosis (DKA) during diagnosis or severe illness, or whatever the case may have been.  We have felt the heartburn and nausea of high ketones, the unquenchable thirst, and the longing for comfort that takes too long to get there.

For most of us, those days represent acute instances of distress.  Scary, yes.  Life-threatening, sometimes.  But if we are reading this blog post today, we somehow escaped diabetes’ wrath and are feeling better thanks to the insulin taking up all of the shelf space in our refrigerators.

Without insulin, kids in developing countries know that type of suffering intimately.  Those of us who are more fortunate cannot lay our heads on our pillows at night and be okay with that.  We understand diabetic ketoacidosis.  We have a moral obligation to curtail DKA as best we can before it senselessly takes any more lives.

If my words come off too harsh here- well, it is a risk I am willing to take.  If our moral obligation leaves us momentarily uncomfortable in our realization of its truth, so be it.  These kids are more than uncomfortable as they await insulin that they should have to begin with.  We owe it to them to do the right thing.

If you can, please spare a rose this February.  Through the simple act of sparing, we can dry so many tears.

Thank you

spare a rose 2015

 

 

 

Dorm Life

dorm pic

This weekend was my college reunion, aka we got to stay over in the dorms and pretend that we were back in school with all of our closest friends right down the hallway whenever we got bored!  This is like the adult version of Disney Land to us!  #GoFriars

We enjoyed every minute of catching up, singing our favorite songs from college, imbibing at the bar on campus, and not thinking much about real life stressors like work or diabetes for a few short days.  We truly needed this, judging by the smiles of joy on all of the alums’ faces for the entire weekend.

I have been fighting a fever / sore throat / mild ketones thing all week, and was losing my voice before I even stepped on campus.  The responsible diabetic part of me felt a bit guilty that I was going to be staying up late dancing instead of dwelling at home in bed piled under blankets and sweating out the fever.  But I decided that this weekend only comes around once every five years, so I better live in the moment unless there was a serious health problem going on, which thankfully was not the case.  I did take some time out during the day on Saturday and Sunday to rest, but the evenings were reserved for my friends.  The relief that this weekend provided in terms of being with my fellow alums and enjoying a mini-hiatus from grad school homework, et al., was so appreciated.

You didn’t win this weekend, Diabetes Guilt Monster!  Channeling our favorite movie, Mean Girls, YOU CAN’T SIT WITH US!!!

Wicked Witch of the East?

“Woah!  Is that normal?!!” my friend and coworker, Jack, exclaimed as we sat on the bench at lunchtime.

“You mean these Incredible Hulk feet?  Yeahhh, not so much,” I replied.

Filed away in some teeny weeny “Future Useful Information” cabinet in my brain, I recalled how months earlier my doctors described that I may notice some swelling in my feet as I transitioned from the insulin pump back to multiple daily injections after a decade of pumping.

In layman’s terms regarding “Swelling Feet 101”- because I have a very basic understanding of this very complicated medical scenario- we would expect to see some swelling, particularly of the feet, due to my body readjusting to normal-ish blood sugar values.

While experiencing the high frequency of my insulin pump problems in the fall/winter, my body was more or less in a prolonged ketonic state.  With almost every site change, ketones built up, and it took hours to recover.  On especially rough days, I sometimes experienced multiple site failures, pushing the recuperation process even farther behind.  Once the problem was rectified, it was time for another site change, and often this process began all over again.  Not fun.

When ketones pop up, your body burns fat for fuel, and you dehydrate and do not absorb food properly.  Hence, the overall zombie apocalypse feeling that ketones carry.  During this time period, I was gaunt, hungry, and tired.  My body became accustomed to this unhealthy status quo of spilling ketones, flushing them out, and starting all over again once a new problem arose.

Shots mostly erased this high ketones song and dance. Insulin was regularly getting into my body via injections, so the ketones did not have a chance to compound like they had in the past. Although I felt infinitely better without ketones, my blood sugars were far from stellar for the first few months back on shots. There was a lot of back and forth figuring out proper basal rates, insulin to carb ratios, and correction factors. And, in diabetes’ signature fashion, it usually changed its mind once we seemed to iron out some details.

I am still not the poster child of superb blood sugars or a brag-worthy A1C, but my numbers are beginning to stabilize. Interestingly, I am seeing improved blood sugars with a significantly-reduced basal regimen. In the past, the basal was too high, prompting big crashes and consequential reactionary blood sugar spikes. In other words, the diabetes rollercoaster had a lot of peaks and valleys.

So, recently when my feet looked like the Wicked Witch of the East’s heels poking out from under the house that crushed her, it was actually a positive thing. Luckily I had a doctor’s appointment the following day, which confirmed that this was the swelling we had initially expected. It had not appeared when first back on shots because my blood sugars had remained erratic, despite the lack of ketones. Now, my body is getting more of the fuel that it needs and the insulin to cover that fuel, so as it rehydrates, there may be some temporary swelling.

As with anything diabetes-related, it’s never really simple, is it? Thankfully, in this situation, the unpleasantness is only brief and will not cause any permanent problems.  The only other issue is that I am having muscle spasms in my feet and legs quite frequently.  I have experienced muscle cramps since childhood.  Although this is nothing new to me, I could do without the intensified “Charlie Horse” occurrences.  The doctors believe this number will decline as the swelling in my feet lessens over time.

Finally, my high heels game is taking a hit here.  But who doesn’t want to wear sandals or Sperry’s in this awesome weather, anyway?  Bring it on!  #ItMakesSenseIfYouHaveDiabetes

“I never meant to make you cry, but tonight / I’m cleanin’ out my closet.” -Eminem

My apartment could easily get selected for a TLC special entitled Hoarders: The Diabetes Edition. I have mountains of old supplies stocked up just in case the apocalypse ever occurs and I for some reason need a 6-year-old infusion set for an insulin pump that I no longer utilize…  (Note: Proper medical guidance instructs never to use expired supplies.  I am in no way recommending that you do so.)

I have trouble discarding diabetes supplies because they represent my lifeline, even if they are expired.  The thought of running out of supplies freaks me out.  Temporary relief arrives when my mail order pharmacy prescriptions knock at my front door, providing life in predetermined 3-month packages per my insurance provider.  But what if I drop and shatter a vial of insulin accidentally?  I may need my fridge stockpile to get me through until my next order.  Most of us are privileged enough to obtain medication through various means, however much of a longwinded telephone loop-de-loop headache that process may render.  If we lived somewhere else or during some other time, we may not have been able to count these blessings.  My bedroom’s diabetes supply closet is a constant reminder of this privilege.

There are certain items that I can’t bring myself to throw out, but probably should.  I returned to multiple daily injections in December after going through the hardest time of my life- a period in which the only type of infusion set that would work with my body type just so happened to have a product defect in multiple lot numbers.  I spent a majority of my time on the couch chasing ketones and brainstorming with insulin pump company representatives and my medical providers as to how we could correct this problem.  I fought going back on shots tooth and nail, bitter that an infusion set component measuring only a few centimeters long could have such dire effects on my health when it was not functioning properly.

“My quality of life will be ruined on shots!” I exclaimed.

“Can you honestly tell me that you have much quality of life right now?  You’re on the couch with ketones every day fighting for your life,” my wise doctor replied.

And so I finally caved and returned to a Lantus and Humalog regimen.  It was rocky at first, but I am now enjoying my time (mostly) ketone-free.  The blood sugar management still has its ups and downs, an inherent trait of type one diabetes.  There are days when I miss the insulin pump’s fine-tuning aspects wholeheartedly.  I still glance down at my waist to check the time on my pump from time to time, only to discover that what was once such a major part of my life is not there any longer.

When I first transitioned off of the pump, my resentment was palpable. Screw you, pump! I’m moving on! This was a mental game in which I tried to convince myself that this was the right move.  A majority of modern day diabetics use pumps, and I felt crazy that this was not a viable option for me.  Yet time and time again, my infusion set changes proved that this was not working for me personally.

Subsequently, I grieved the pump’s loss under a mask of anger and sarcasm.  During some particularly emotional days, I still think it’s Halloween mask time.

Yet after this struggle, there remains a part of me that cannot bear to throw out the pump supplies.  They have defects, so I cannot donate them to charity for fear of putting someone else through ketone hell.  Instead, they crowd my coat closet by the front door, my bedroom closet from floor to ceiling, the space under my bed, and other spots below stacks of grad school books. I might need these supplies again one day, right? They are a lifeline to another time, another method of managing this jerk of a disease.

Perhaps I will try again.  Not yet.  But perhaps.  The pain is still too raw and we still have too much work to do on the shots before a new decision can be made.

I would be lying if I said that I am not still processing my frustration and disappointment in the entire faulty infusion set situation.  Heck, I’ve certainly blogged about it enough.  But I am more cognizant of the concept of forgiveness and enjoying the present moment now.  I saw firsthand how quickly health can change, what it feels like to watch yourself dwindle away into nothingness.  If it was not for determined doctors and nurses who believed me and did not give up, I may not still be here.  But I am here, so I need to make the most of this life.

Just in case I ever need the insulin pump collecting dust on a shelf, its infusion set and reservoir packages will decorate my room for now.  Whenever I move to a larger residence, I will box them up and put them in a storage closet, packed away neatly with the other memories of my life.  Out of sight, out of mind.

Honestly, though, whether insulin pump enthusiasts or shots supporters, we do not need bigger apartments with huge walk-in closets.

What we really need is a cure.

pump boxes

Weird.

Today was weird.

It started off with getting called to the front of a 200-person meeting to participate in Dance Dance Revolution.  My coworker won the dance-off, but now the whole office knows who the real #LeftShark from Katy Perry’s SuperBowl halftime show was.  (That would be yours truly).

006

Later I discovered a 300+ blood glucose reading at lunch and a blood test confirmed some ketones.  Yikes, considering we had another meeting on the way.  No more Dance Dance Revolution for this girl, though!  I felt like this lizard that I encountered on a recent trip to Florida, as in Leave me the heck alone, intruders! [in this case, ketones].

009

I bolused quite a bit and played the “wait it out and let the insulin do its job” game, otherwise known as “patience is a virtue, but it’s really freakin’ difficult when you don’t feel well!”

Trusting in insulin after all of my insulin pump drama in the past has been a challenge for me.  I’m still getting accustomed to the idea that when I bolus, insulin generally does something.  Before, it was not always the case.  Today, it did its thing, although I’m still running too high.

Tomorrow we shall try again.  Bring it on.

Pros and Cons, Do’s and Don’ts, X’s and O’s

001

I could write a 200-page manifesto about the ups and downs of 2014 while insulin pumping and then transitioning to shots, but for the sake of not straining our eyes by reading a mile-long exhaustive blog post, here are some main points worthy of highlighting:

Pros of Shots:

  • I know with certainty that insulin is getting into me.  A reliable insulin delivery mechanism is something that I will never take for granted again.  There is something to be said for a good, old-fashioned jab with a syringe.  Plus, ketones have packed up and moved out for now.
  • The mental relief that this offers is difficult to articulate.  We are slowly but surely building back trust: a trust in insulin that it will do its job, a trust in eating a nutritious meal and knowing that insulin in my body will cover that food, a trust that I will not wake up in the middle of the night in a ketonic state, and- frankly and in violation of the “double negatives rule”- a trust that I will not not wake up one day due to ketones.
  • Trusting in the doctors’ knowledge:  While taking over twenty units of long-acting insulin such as Lantus after a decade of pumping might not be a big deal to some diabetics, for me it was a huge mental mountain to wrap my head around.  Multiple doctors chimed in throughout this process, thankfully.  One in particular yielded emails at all crazy hours of the weekend.  And the other reassured me over the phone that I would be okay, her voice calm and confident.  On the first day of injecting, I said a quick prayer and reminded myself that these doctors went through graduate and medical school and have been doing this for many years; I had to believe in their expertise.  So far, they have proven that they know their stuff!
  • Taking long showers without rushing to get out and reconnect to life-sustaining medical equipment.
  • Only one insertion (Dexcom) about every two weeks.
  • Wearing only one site (Dexcom).
  • Crossing a “Never Have I Ever” trump card off my list- at least if playing with other diabetics.  (I never liked that game, anyway).  “Never have I ever given myself an insulin injection in the stomach…”  Oh wait, I just did it three times today without flinching.
  • Finding the humor in the situation.  For example, shooting up at a rest area recently while a horrified mother spotted me and promptly peeled out of the parking lot, the wheels of her minivan screeching, after she unfairly assumed that I was a heroin junkie.  Far from it…
  • I don’t need a behemoth-sized-suitcase filled with back-up pump supplies when I travel.
  • Trying new things:  Even three months ago, I never would have consented to trying a different way.  I have the #doc and some very patient, compassionate doctors to thank for renewing my strength and for holding me up on the bad days.
  • Honesty.  This process has made me more upfront with myself and my doctors.  For years, I skirted around the issues, felt trapped in one method of diabetes treatment, and perhaps did not accept how multifaceted my insulin pumping problems had become.  No one likes to feel desperate, but I can see in my old blog posts, emails to pump reps, tears cried to my doctor, and so on that what I was doing on the pump was not working as optimally as it is intended to; hence, we needed to at least try something else.  A few weeks later, here we are…

Cons of Shots:

  • I’d be lying if I said I didn’t miss the pump (very strong emphasis on the “good pump site” days).  The stability in my blood sugar was better on the pump, but perhaps some of the severity of the recent “shots rollercoaster” is the fact that it’s only a few weeks into the trial and we have a lot of insulin dosing details left to address.
  • The pump is much more convenient.  Out of habit, I still reach down to my side to take a correction bolus with my invisible pump friend, only to find him missing in action.  I am in the process of waiting out an insulin pen prescription, and I hope that this makes things a bit easier in the day-to-day aspects of shots.  Currently, I prefill some syringes with typical Humalog doses or I manually fill the injections, making it a somewhat timely and tedious process.
  • Shots require more thinking.  I have to really focus when I draw up the amounts.  I quadruple-check that I have drawn up twenty-three units of Lantus, rather than Humalog.  (My doctor recommended using nail polish on the insulin boxes and bottles to help differentiate between them.  I know that there are colored lids, ties, etc., that you can also purchase.  The bottom line is that you want something that will catch your eye and make you focus on taking the correct type of insulin).
  • Where, oh, where, have my temp basals gone?  Plus one for the pump in that regard.
  • Once the insulin is in you, it’s in you for the day.  Currently, I take one Lantus dose daily, but we may transition to twice a day for some fine-tuning.  I am too high during the daytime, but at night I crash harder than a college kid at her first keg party.
  • Bruises.  Lots of them.  My hand-eye coordination has always been a bit defunct (i.e. my kindergarten teacher sent a note home telling Mom to have me practice cutting and coloring in-between the lines over the summer).  Perhaps this deficit is why I simply suck at shots.  It’s the opposite of “you can give it out but you can’t take it.”  Actually, I am pretty darn good at taking shots without any tears, but when it comes to giving them, the “stab repeatedly” method doesn’t work so well.
  • Lantus burns.  It’s not excruciating, but it’s there.
  • Socially, it’s either inject in public, or scurry off to the bathroom for every injection.  Because I find that I really have to concentrate when taking Lantus to make sure I’m drawing up the right dose, of the right medication, at the right time, I often take that shot in the bathroom at work so that I can have some privacy to focus.  I do not have much shame about taking injections in public, but it is more the “always having to have the diabetes conversation” element that I sometimes would rather avoid.  However, I have done many injections in my abdomen at work and in the local coffee shops, and no one has noticed.  On the plus side (I think?), my friends are eager to puncture my skin with a needle whenever they can have the chance; so far, I trust my mediocre injection skills over theirs.

Do’s of Shots:

  • Consult your doctor(s).  Consult the diabetic online community.  Weigh your options.  Take action if you are ready to try something new.
  • Write down all your pump information, such as basal rates and carb ratios, so that you have it handy if needed in the future.
  • Tell someone what you are doing.  Transitioning from the pump to shots after many years of pumping is scary and it is an educated-guessing-game under the guidance of medical professionals, as most diabetes-related things are.  During this time, there is a slightly-elevated risk that something out of the ordinary may happen, such as a severe low blood sugar due to an inadvertent insulin dosing mishap.  I emailed a few friends at work one day when I was not feeling well, on the off chance that an emergency did occur; I told them the name of my diabetes clinic and some basic information about my transition back to shots, on the very rare chance that I may not be able to articulate these facts myself to an emergency responder if a bad situation occurred.
  • This is another reason to have proper medical identification.  You can read more about this under disclaimers and disclosures, but MedicAlert has served me well for over twenty years.  I feel comfort in knowing that my medical and contact information is stored in their database, and that if I were ever unconscious an emergency responder would know that I was type one diabetic simply by reading the back of a MedicAlert medical identification bracelet that I wear at all times.
  • Restock on supplies: glucose tabs for the car, juice at the office, etc.
  • Understand that you may require more insulin in your boluses than you currently do on the pump.  My correction factors and insulin to carb ratios have changed significantly as we iron out the Lantus details.

Don’ts of Shots:

  • I do not regret trying shots.  My doctors and I were ready to do this in this moment.  In hindsight, however, I picked a rather difficult first week to test out multiple daily injections again.  Guys: You’ve been warned.  The next few sentences discuss female stuff.  #sorryimnotsorry 
  • A few days prior to the beginning of my cycle, my hormones seem to have an epic party where they are up all night chugging Red Bull and taking vodka shots within my body.  My blood glucose refuses to budge from its perch high atop the elevated blood sugar peak, despite increased insulin doses which are sometimes quadruple my normal amounts.
  • Dealing with this frustration on top of re-learning shots, as well as having planned a purposely-conservative Lantus dosage with my endocrinologist for the first few days just to be safe, created a high blood glucose dilemma for us.  I was stuck in the 300s and 350s for days on end, and was more or less feeling miserable.  Once the hormone block party subsided, things evened out a bit and I began to feel much better.  So, for the ladies, I would recommend planning around the week of your cycle if you are interested in transitioning back to shots anytime soon.
  • Don’t switch back to shots solely because you do not want to be attached to a medical device at all times.  To be honest, I have not felt an overwhelming sense of “freedom” being without the pump; in fact, I miss it for its good aspects quite a lot.  It was cool for like, a day, to have one less site to worry about while showering, but all in all, this should not make or break your insulin management decision.
  • Don’t throw in the towel quickly.  I’ll admit, I was ready to do so based on the first few days of non-stop highs.  I verbally committed while on the phone with my doctor to try for a week, and then I tweeted it out to make sure I held myself to that goal.  On the first week of the trial, the stubborn Italian part of me was not going to give up until Saturday, which would mark the full seven days of shots.  On Thursday, I emailed another doctor and asked the question that I wasn’t answering for myself: “So, I should try this shots thing for more than a week?”  She encouraged me to continue with the shots.
  • I was looking for her affirmation and for someone else to make the tough call, and I am happy now that she gave me the tough answer.  It was a difficult first week, but by the second week it was infinitely better.  Now on the third week, we still have things to tweak and my blood sugars are far from stellar, but I do feel better and there is insulin getting into my body.
  • The back to the basics, simple things about insulin are now appreciated more than ever.  I take a shot and I watch insulin do its thing.  In that regard, I am truly blessed to have access to this life-sustaining medication and to doctors who can tell me how best to use it.

X’s and O’s:

Consider this a big virtual hug to each of you for being my sounding board during a trying time in my diabetes journey.  Knowing that someone out there was reading this and perhaps going through a similar trial, receiving innovative suggestions to insulin management, perusing your blogs and tweets, and overall feeling the strong sense of community is what made the hardest part – taking the first step, or, in this case, the first shot – totally worth it.

My long-term plan is to continue this shots trial for another month or so and then perhaps switch back to the pump with reduced pump basal rates and some background injected Lantus basal as a precaution for faulty-pump-site days.

I feel blessed to have made so many friends in the diabetic online community and to have a health care team that has steadfastly worked to make me feel better.  One day many months ago, when my head spun from ketones-induced nausea after another failed pump site, I thought to myself, Maybe I should start a blog?  There must be someone out there who “gets it,” too?  Today, having been encouraged to fight for my health through the inspiration of the #doc, I lift my very light, no sugar coffee cup to you.

Thank you…

XOXO,

Ally

Housekeeping

002Sure T Insulin at Connector Site002

Before I publish a lengthy manifesto on the pros and cons of insulin pumping versus injections in regards to my recent switch over to shots, there are a few long overdue housekeeping details that I would like to highlight for those interested.

1.)  Meeting of the Diabetes Minds

Around Halloween, I had a big appointment with an insulin pump representative and my nurse.  My doctor also sat in during her lunch break.  I know that it was around Halloween because I brought a bag full of insulin pump supplies as well as Halloween cupcakes coated in frosting (see above) as sustenance for those who were kindhearted enough to meet with me on their free time.  So, it was a meeting of the multifaceted diabetes minds, fueled by large amounts of sugar for those with properly-functioning pancreases.

We went through every scenario, including a live insulin pump site change.  They all nodded their heads in agreement when I showed them how Humalog bubbled up quickly in the reservoir.  We were all baffled as to why the Sure T infusion sets continued to pool insulin at the connector site.  And so on.  Basically, we knew there were problems, and we had to try to tackle them each individually.

2.)  Sure T infusion sets

Regarding the Sure T, I have said it before and I will continue to say it: I like Medtronic.  Their pump rep nurses were as gentle as possible when we did the “human pincushion” trial and error game of inserting into different sites during appointments over the past two years.  Those days were not easy for any of us, on a mental and physical level, but their confident reassurance that it was going to be okay is something that I will always carry with me.  Medtronic’s customer service is timely, polite, and helpful.  One manager in particular has logged dozens of hours on the phone with me while we documented and troubleshooted what we believe to be a rare Sure T product defect.  Medtronic has sent me various lot numbers of Sure Ts to try, and I have sent them back my problematic sets for analyses, the results of which are still to be determined.

In a nutshell, we have tried repeatedly to make the Sure T work for me, but maybe the Sure T doesn’t like people with very light, no sugar coffee orders.  Sure T might perform better for a different diabetic coffee enthusiast on a different day.  You tell me.

The recent product warning sent out by Medtronic is believed to be unrelated to my issue.  See image above; note that insulin droplets pool at the connector site and do not get into my body.  The proof is in the sugar-free pudding: after many site changes, subsequent ketone spikes, stubborn high blood sugars, and droplets of insulin falling out at the site, we have decided to hold off on using the Sure T until new lots are manufactured in the future.  Although I like the steel needle aspect of the Sure T, as bent cannulas cannot occur, if/when I transition back to the insulin pump after doing multiple daily injections for awhile, I will most likely give the Medtronic Quick Sets another try.

Whenever I switched a Sure T site out, I always ate low-carb for a few hours afterwards in case the insulin was not getting into me.  My fear is that someone who is unaware of this risk might consume a big pasta dinner and have an infusion set failure unbeknownst to that person, leading to a very dangerous situation very quickly.  I disclose this information so that you are at least aware of this potential problem if you also use Sure Ts.

Note: If you experience any insulin pump problems, please contact your respective pump company so that they can document the issue and investigate safely.

3.)  Bubbles in insulin pump reservoirs

I detailed this extensively in Broken Record, but to summarize briefly: These were more than champagne bubbles, they blocked proper insulin delivery, and they caused blood sugar to stagnate at high levels until the problem was identified and the reservoir changed out.

A Facebook user recommended that I pre-fill a reservoir a day before an expected site change, let it sit undisturbed to allow big bubbles to settle, and then prime those bubbles through the tubing on the day of the site change.  For some reason, letting the reservoir sit for a day helped immensely.  I also found that Novolog produced bigger bubbles which were easier to eradicate than Humalog’s millions of feisty bubbles which had a knack for procreating over time.  Get a room, Humalog love birds!

Please note that this trick is not recommended by pump companies, as insulin has been shown to lose efficacy over time in the plastic reservoirs.  However, given the frequency and degree of problems I encountered with pump site changes, I found that pre-filling the reservoir was a risk I was willing to assume, and I was always cognizant and on the look-out for problems related to this risk.  So far, the benefits have outweighed these risks.

I hope that this update is helpful to anyone who was curious about the possible solutions identified for my insulin pumping problems.  Thank you again to all who offered encouragement and advice along the way.  More to come soon with a post chronicling the transition back to insulin shots.  Yeehaw!

Move along, Negative Nancy!

Truth be told, I haven’t posted as much because I’ve been a little too Negative Nancy and not enough Very Light, No Sugar for my liking.  Consider this an apology of sorts.  This disease, in my adulthood, has changed me.  I miss the carefree kid in high school who was a dorky, yet extroverted, fun-loving person.  Nowadays, I don’t know what happened to that girl.  I’m still Ally, but on the rough days, I’m Angry Ally.

“Anger is a secondary emotion,” my friend said last week, when we chatted about the typical emotional twenty-something-year-old female stuff.

I have always known that, but the way she said it just stuck with me.  She’s right.  There’s more depth to my anger.  I’m hungry, for starters.  On the bad pump days when my blood sugar hovers in the 250s and 300s, I avoid carbs as if they were the Grim Reaper.  Sometimes it takes the entire day to recover after a pump problem, and I have just adapted to the growling in my stomach and the hunger pangs lodged in my ribcage.

“You look skinny to me- skinnier than when I last saw you. It’s all of this ketone stuff with the pump, huh?” my nurse asked gently as she tried to identify good insertion sites for the pump.

“No.  I’m actually gaining weight from the grad school diet,” I defensively replied, convinced that she was wrong.

That night I stepped on the scale and was surprised to see the 5-pound weight loss.  While it is an easy coping mechanism for all of us to laugh it off and say, “Well, maybe ketones bring one positive to the table,” the reality of that statement is that it is not a joke. Losing weight due to ketones is never a good thing. It is your body burning fat for fuel. It is another painful pump site because you’re out of cushioning. It is how diabetic eating disorders can begin, and it is harmful to the body no matter the circumstances leading up to it.

 

Full disclaimer here: I wholeheartedly intend to eradicate ketones from existence whenever possible, and I would rather gain some pounds than suffer one more day with ketones. But I am mindful of how easily this could escalate into a larger problem. I believe that this is an issue that needs to be discussed more often in the diabetes community, so here is my limited knowledge on the topic and my best effort to get a more open conversation going. If you believe that you may have an issue related to this topic, please know that you are strong and that you owe it to yourself to feel better by getting help.

Beep, beep, beep. Snooze. Ten more minutes. No, eleven. No, thirty-five. Yawn. Working fulltime, grad school at night, and driving to Boston regularly while figuring out the diabetes dilemmas are exhausting in and of themselves. Then, as we all know, diabetes loves to come out to play from dusk to dawn; it’s like a Great White Shark or something. In other words, it is a large nuisance with a ferocious bite. We’ve all been there: Head on the pillow, deep breath, fading into sleep, and then… EEEEEE EEEEEE EEEEEE from the Dexcom on the nightstand. Dexcom is like the loyal dog which never strays from its owner, and I am so thankful to have access to this lifesaving product. (It’s as good a time as any to remind us about #MedicareCoverCGM, right?) But it is just another example of the many ways diabetes disrupts our rest.

Being tired and hungry, for me at least, means that my patience threshold is running on vapors by 10:00 am most mornings, no matter how many very light, no sugar coffees are consumed. Little problems seem like big ones when all you want is pizza for lunch but you know that salad with a few miniscule pieces of chicken is your untimely fate for the day.

Or that one dramatic coworker is going on and on about how much his head cold has negatively impacted his life, and you can barely contain yourself from throwing vocabulary daggers his way- something along the lines of, “I HAVE POKED MYSELF WITH 50 NEEDLES. IN. THE. PAST. THREE. DAYS!!!!!” But you let it slide because you don’t have the energy to fight another battle. But then you feel guilty because you missed a chance to advocate and enlighten the ignorant, damnit! And then you feel like your focus is only about you, when you know full-well that many other people suffer, too. And then you start to live-tweet your emotions, and you worry that you are annoying the heck out of the people in your virtual support team, whether a valid concern or not. And then you feel guilty again. And then your CGM buzzes and you’re still 278 after the second pump change…

I admire the people in the DOC who are open about their emotional struggles with this disease. It takes true guts to be vulnerable to that degree. So, yes, I have a front row seat in the fan club for, well, all of you. It is difficult to come to grips with one’s own emotions at times, but in the long run it provides a healthier mental and physical outcome, if history and science are any indication.

Although being Negative Nancy is not fun, maybe I should also give myself some slack here? Diabetes is a daunting, never-ending job, and those outsiders who say “Laughter is the best medicine” probably haven’t tried to laugh when they have moderate-to-large ketones. It’s just not happening, people. But I can promise to attempt to tap into that whole thing called “perspective” that diabetes gives us a bit more often. We all know that little things aren’t the end of the world because we have already lived through the end of the pancreatic islet cell world. Badasses.

Thanks for putting up with my grumpy tweets. Sometimes it just helps to be heard.

Broken Record.

002002

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?

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.