Speak Your Mind

I’m doing some research for one of my grad classes with a focus on how the Affordable Care Act impacts quality of care.  While there are objective measures of quality such as hospital reimbursement rates, I believe the patient perspective is invaluable as well.  Quality, then, must be addressed and defined from the various view points of those in the health care system.

I would like to gather some patient responses prior to my presentation.  Personally identifiable information will not be included, rather, the aggregate of the information provided to me will be summarized for my class.

So, if you have an opinion on how quality affects your health care, please comment here or feel free to contact me over the next few weeks.

What would you like to see change in terms of quality of care?

Do you think that the way your health care providers measure quality is an adequate representation of the type of care you receive?

Have you noticed changes- good or bad- in your quality of care since the passage of the Affordable Care Act?

Is your health care delivery environment upfront about how they plan to improve the quality of your care?

These are just starting points, but any and all information provided will be useful and is greatly appreciated.

Thanks for your help!

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).

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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].

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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.

The Real Patient Portals

For privacy purposes of those discussed here, some of the details of this blog post have been altered/omitted. The heart of the story remains the same.

 

To avoid the throbbing headache that is commuting from Providence to Boston during morning traffic, I stayed over in Massachusetts prior to my Joslin appointments this week.

I hoped to catch the end of the Providence-Villanova game at the hotel bar, but the thrashing PC was receiving was so embarrassing that the bartender instead flipped between The Voice and the Bruins. I asked a patron if the seat next to her at the crowded bar was available, and she nodded. The restaurant was busy and it seemed like it would be a while before my dinner was delivered, so I took a big gulp of my classy Bud Light and vowed to make friends while I waited.

“Are you here for business?” I asked the professionally-dressed woman.

“Actually, my child is being treated at Children’s Hospital.”

“I’m sorry to hear that. But your child is in phenomenal hands.”

“Yes, we have been here for a long time, but soon we will travel home with a stronger, healthier child. We have been very blessed.”

And so we talked for almost an hour. We discussed her home many miles away from here, admired the nurses who followed their professional callings to ease the suffering of their patients, educated one another on our respective areas of patient or caregiver knowledge, and, to be quite honest, took solace in finding a bar buddy who understood the stress and anxiety of Boston medical appointments. Sure, I seek out care in Boston because it is the best, and this lady does, too. But that doesn’t make it any less gut-wrenching every time the appointment days arrive.

We eventually wished each other well and parted ways. I want to give SuperMom an anonymous shout out here, though, because of the example of strength that she provided that evening. I have so much respect for the parents of any child who faces illness- whether that be type one diabetes or something else. Being the patient for most of my life, I have mainly been preoccupied with my own suffering- something I know that I can and will handle.

Watching others suffer, though, makes me nauseous, anxious, and somewhat frozen in “What do I do?!!” mode. SuperMoms and SuperDads don’t have the option of “What do I do?!!” mode. They activate “Do” mode because their child is hurting and they want the pain to stop. They remain calm when the world is shaken up around them. Yes, they have days of sadness and tears, but they try their best to provide their children with the greatest lives possible, to comfort them on the rough days, and to keep on going.

So, to SuperMom at the bar, cheers to health and happiness for you and your family.

The next morning, I hastily checked out of the hotel and made my way to Joslin Diabetes Center, where I had one thing on my mind: very light, no sugar coffee, and even better if you can hook me up to an IV drip of it.

I generally enjoy my Joslin experience because it is one of the only places on earth where I feel completely safe from a diabetes standpoint. If I go low or high, there are plenty of people who know how to help. But this time, I was nervous and emotional, as it was my last appointment with Current Endo before her departure; additionally, these days are quite frankly long and exhausting no matter what the outcome is.

I fumbled my way to the coffee stand through a haze of anxiety.

“What’s ah matter, my darling?” the coffee stand employee cooed, her brow furrowed.

“Oh, nothing. I just need some coffee to wake up,” I said, shrugging it off.

“I asked how your morning was and you didn’t reply,” she sounded off, much to my surprise and admiration. (I like a person who tells it like it is!)

“My apologies. I must not have heard you.” My level of distractedness due to nerves was obvious now.

Without skipping a beat, she looked me straight in the eye and stated, “You will be okay. You are so strong.”

This kind woman had never met me before. She had no prior knowledge as to whether I was in the hospital district of Boston as a patient, a caregiver, a sales rep, an employee, or so on. But she knew, without hesitation, that I was hurting simply from the look in my eyes. She seemed to recognize that I was the patient, and that I was trying to keep it all together. Her confidence that I could do this was the gentle nudge I needed to go check in at Joslin, ready to take on the day and whatever it would bring.

Blinking back tears, I thanked her for her reassurance and sauntered off with coffee warming my hands and coffee shop lady’s words warming my soul.

After my appointments, I needed more coffee before racing back to work. I stopped at the same coffee kiosk, and the same employee was still there. I filled my cup and went to pay.

“You were right. Everything was okay. I wanted to thank you for what you said earlier. You made me feel better.”

“God will take care of everything,” she replied.

“Yes. And there should be more people in the world like you. Your joy is contagious.”

And we both fought back tears, nodded our heads in agreement, and vowed to pray for one another.

Bars and coffee shops are the real patient portals. These are the watering holes for the warriors- the patients and the caregivers- to assemble and collect their emotions. Here, the pep talks happen. The fears and aspirations are relayed. The hugs are handed out a little more freely. The tears are dried if necessary. God is there, as these women proved to me this week.

Lucky for me, I’m always thirsty. Something tells me I’ll be back soon.

To SuperMom and SuperCoffeeShopEmployee, this blog post goes out to you. You are both inspirations. Thank you…

Beginning of the End(o)

This week my endocrinologist is transitioning to a different medical office which is, realistically, too far away for me to travel to for future appointments.  This endo not only is a kind, non-judgmental doctor, but in my head she is dubbed as the “Basal Insulin Wizard.”  She has a knack for knowing which little adjustments need to be made to prevent or to fix huge problems.  She also deals with an inundation of emails in her inbox, mostly from me.  I pride myself on being an engaged patient, but I also understand that doctors do not have much time in the day to get everything done for every patient.

A few months ago I asked her, “Do your other patients email you like this?”

“Not really…” she replied.

And then we both had to take a moment to compose ourselves through a mutual fit of giggling.  Without saying much, we both totally got it.

I am intense in my emails, but I am also fighting for my health.  I appreciate a doctor who recognizes that and works with me.  Current Endo has done that, and I will miss the comfortable relationship we have built over the past few years.  Her new patients are blessed to have her on their team.

So, what am I going to do now?

I’ll tell you what I should have done: started searching for a new endo a few months ago when I was first told of Current Endo’s impending departure.  She gave me a few recommendations for a new endo at that time, and my nurse proclaimed, “If I were a type one diabetic, I would definitely get treated by _____!”  Naturally, I should have then booked an appointment with Endo _____.

But I didn’t.  Perhaps it was a bit of diabetes burn out, and I must now own that.  Perhaps it was a bit of denial that Current Endo was leaving.  Perhaps it was the fact that from a practical sense, I am tired of commuting many hours roundtrip for my diabetes care, albeit I feel strongly about the top-notch care I receive in Boston.

All I can do now is make a plan.  I will pick up the phone and schedule a new endo appointment this week.  Diabetes doesn’t take a vacation, and it certainly doesn’t care that my endo is switching offices.  I will rely heavily on my nurse during this transition period while I wait to meet my new endo.  This situation makes me so thankful for a nurse who is willing to put in the extra effort to help me to stay well.  She will rise to the occasion, and now I must do so, too.

New Endo will not replace the relationship- and possibly not the same skills- as Current Endo represents for me.  And that is okay.  People are inherently different in their attributes, and I am optimistic that whatever my relationship may become with the New Endo, it will be its own unique entity with positive results.  I must be thankful for the calm guidance of Current Endo, and I will remember her for that.

Warming up to New Endo may take some time.  I am a patient highly involved in my own care, and I’ve also made many major changes in my courses of treatment this year (Dexcom CGM, returning to multiple daily injections versus insulin pumping, and taking much larger insulin doses).  This is a lot of information for all of us to process, and sometimes the road may not be free of bumps.

For now, we’re just going to ride with it.

Hey, that’s mine. And I’m taking it back!

I must confess that I haven’t been in a “very light” mood this week.  It’s a combination of PMS, a pesky chest cold, and the manner in which they catapult my blood glucose to the stratosphere, stuck no matter how many tears I dry or units I bolus.  It’s diabetes at its most vindictive: Ha! Your bazooka-bolus will drop you a whopping TEN mg/dL!  This in turn causes me to feel badly about my irrational BG “failures,” as well as my subsequent grumpiness.  I tried to take a Twitter hiatus as the Catholic grammar school mantra, “If you don’t have anything nice to say, don’t say it,” rang in my ears.  I woke up the next day to a few private messages from well-wishers (thank you- you know who you are), and I realized that instead of hibernating on Twitter perhaps I should open myself up to that support.  After all, it’s the signature of the online communities that I have grown to love.

#BellLetsTalk tweets and blog posts inspired me during my figuratively “extra dark coffee, loaded with sugar” musings.  It is humbling to see that so many people worldwide shared their deeply personal stories during this Canadian mental health effort, and by doing so they inspired others to seek support and to perhaps share their own stories, too.  #BellLetsTalk celebrates these strong, courageous souls.  I could feel the societal stigma lifting as I perused their words, felt their pain as a fellow human being, and admired their strength.

When Sophie- the talented blogger of Writing Possibility whose honesty and eloquence in writing make her one of my favorites in the #doc- invited me to participate in the Take Back What’s Yours campaign, I knew that this was an opportunity to empower myself during a week where diabetes was making me feel especially vulnerable.  Take Back What’s Yours is an effort launched by Chloe’s Concept encouraging readers to take back something good that may have been lost along the way during life’s tribulations, such as a hobby that brought joy or a sense of hope.  If you feel so inclined, please join us in taking back what’s yours.  Let’s celebrate ourselves in the spirit of #BellLetsTalk and #TakeBackWhatsYours.

Here’s what’s mine, and I’m taking it back:

Note: You’ll get the gist of it as you read each paragraph, but in certain circumstances I am “taking back” in the sense of regaining my footing with something I have struggled with.  I am taking it back in that I am conceding that it happened, but I will not allow it to occur anymore if possible.  In other circumstances, I am “taking back” positive things that I have lost sight of recently.  While the hashtag’s meaning may have been slightly altered for purposes of this blog post, I think the theme of #TakeBackWhatsYours is still alive and well here.  This is the best way that I can express the hashtag in terms of my individual trials in life.

1.)  From a point-forward basis, I am taking back the nights that I went to bed hungry as an employed, educated American woman.  I have been blessed enough by my current circumstances in life to be able to put food on the table; now it’s time to enjoy it again.  I do not fit the stereotype of a starving child in a third world country far away from here, but I have been far too familiar with hunger due to the aftermath of faulty insulin pump sites and the fears running rampant in my own mind.  Food is not the enemy.  Insulin is not the bad guy.  And I am fully capable of doing this, no matter how scary it seems.  I will not go to bed hungry any longer.  This means I must make some concessions: bolus larger amounts of insulin before bed; eat when my blood sugar is higher than I would prefer for it to be going into a meal; learn that it is okay to see some slightly-skewed blood sugars during this time of growing; share my story in case someone out there is hungry for the same reasons.

2.)  I am taking back the “set in stone,” predefined amounts of insulin that have so dictated my dosing for many years.  Each day with diabetes is different, and insulin needs to reflect this.  I will be more flexible.  I will email my doctor about the mini-successes.  I will celebrate them.  And I will pledge to keep trying.  If the dose misfires, well, I have enough experience to know how to handle it by now.

3.)  I am taking back feeling guilty about my feelings.  From day one of creating this blog, I promised to be authentic, and I believe that I have been.  Sometimes the #nofilter thing makes me feel like I’m wearing my emotions on my sleeve too much, but I wouldn’t be me if my sleeves weren’t a little dirty.  I am taking back being too hard on myself for a tweet that I perceived as overly-cranky or for fear of annoying others.  We all annoy someone at some point at some time.  If we are in the wrong, we can apologize and move forward.  But if we walk the line of keeping too much to ourselves, we aren’t allowing others in as much as we should be.

4.)  I am taking back my former joys and living in the moment.  I will recognize that I am more than diabetes and health care advocacy.  While these are enormous passions of mine, I also need to take some time for myself to try new things and to chill out with my own thoughts.  Always being on the go and jumping head first into the next project are qualities that have helped me to succeed, but reading a book for pleasure or grabbing a beer after work with friends on a Wednesday night are also ways in which I can obtain happiness.  There doesn’t always have to be a goal: an A1C target, a certain GPA, a defined objective measurement of success.  Instead, there can be some down time to relax, to connect with the people around you, and to be present in life.  It is fine to be hardwired to “busy and productive mode,” but setting aside a few hours a week for other enjoyments is crucial to long-term health and happiness.

5.)  I am taking back my ability to allow others in to help.  As a diabetes-induced defense mechanism, I have handled things on my own for a while now.  When friends try to help, I’m initially willing to talk their ears off about diabetes, but by the end of it, I’m usually saying things I don’t mean to say out of frustration.  The more open I become, the more vulnerable I feel, and the more I can’t seem to come to grips with it.  For the sake of my relationships, this nonsense has to stop.  As much as I want to act tough and invincible, the reality is that there will be times where diabetes has a strong hold over me.  Why not accept the support others are so generously trying to give me, even after I have pushed them away?  These are clearly goodhearted people, and I should be counting my blessings instead of running from them.

Better

“Is your diabetic relative’s diabetes as ‘bad’ as yours?”

It was a fair enough question to ask considering the whole #nofilter hash tag often dictates my social media interactions.  The good, the bad, and the ugly are relayed to my followers, and I make no apologies for that.  This is life with autoimmune disease from my perspective, and if I’m going to share that story, I’m going to keep it real.

The question still kind of hurt, though.  I truly didn’t know my diabetes was considered “bad.”  Sure, my A1C is less-than-stellar.  I was overly-vocal about my insulin pump frustrations, albeit I was fighting for my quality of life.  I look back and see the desperation in my words- those spoken and those written– but I never thought that I was going to lay down and let the diabetes wave roll over me.  I was, and I still am, going to fight this.

A good friend asked the question about 6 weeks ago, slowly articulating the words, immediately wishing she could pull them back in before I could snap.  I said something along the lines of, “I mean, we’ve always more or less had similar results in our diabetes management.  But it’s type one diabetes.  There are ‘good’ and ‘bad’ days even if you’re the ‘best diabetic’ out there, and the ‘best diabetic’ doesn’t exist in real life.”

Then we returned to our beverages and talking about our jobs, and until now I haven’t thought much about that conversation.

The truth of the matter is, 6 weeks and a complete 180 degree turn in diabetes management from insulin pumping to multiple daily injections later, I do indeed feel better.  I’m almost afraid to say it because some kind of a diabetic hex might come out of the woodwork and knock me to the ground again.

My transition back to insulin injections is a bit less bumpy now.  My quality of life has started to see sunlight again.  Little things like eating a ranch chicken sandwich for lunch and sending a picture to my doctor (#yay!), bolusing insulin and knowing that it will do its thing to keep me alive when I eat that sandwich, bowling with friends and watching the exercise work its magic on my CGM graph, and having so much fun that for a few hours the CGM graph doesn’t really matter- these things that a few months ago seemed so far out of reach- are now suddenly part of enjoying life.  It feels so good that I am scared of losing it again.

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There is an element of “survivor’s guilt” in diabetes for me at times.  I know that I deserve to be healthy and to enjoy my twenties.  I know that feeling better can be fleeting if diabetes has its say in the matter.  But I also know that feeling better is something I so passionately want and have fought for, so I shouldn’t feel guilty or afraid of the betterment, right?  And even if it does eventually fade away, I will do what every diabetic does: lift my head up and find a different way to fight diabetes until I feel better again.

Moral of the blog post: Do what you have to do to feel better.  If that means writing somewhat corny, sentimental blog posts far too often, tweeting in rapid fire to get suggestions on diabetes management, or completely changing your course of treatment- so be it.  If an insulin pump works best for your needs and your health, utilize that technology if you can.  If you want to take a pump vacation, book your flight.  Using whatever floats your diabetes boat, just try your best to keep on floating.  We deserve to feel better.  And take it from someone who has been in the diabetes trenches: we can feel better.

Hemingway for the Win!

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“Write hard and clear about what hurts.”  -Ernest Hemingway

 

The rookie to diabetes blogging this year, I soon discovered a community that rises up and carries its pain together like garden ants that have stumbled upon a cracker at a picnic- only we’re not as gross, we don’t have antennae, and we would surely bolus for the cracker carbs.

In the act of lifting up this thing together- this disease and all of its pokes and prods, interrupted sleep, hunger, thirst, laughter, and tears- we speak and write from the souls of those who have stared down what hurts, and who will stare it down again tomorrow.

That’s what 2014 was for me: being awestruck by the passion, wit, humor, creativity, warmth, and truthfulness of the diabetic online community as it writes hard and clear about what hurts.

You make it hurt less.

May the New Year be a healthy and happy one for the #DOC.

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

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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

When I Grow Up, I Want to be a… Patient!

On my hour-long drives to reach my diabetes clinic, I have been reflecting a bit more on one of my leading roles in life: playing the part of the patient.  What does this mean?  In high school, it simply meant showing up at the doctor’s office a few times a year, rolling my eyes as the medical staff gave advice, and grumbling to Mom on the car rides home about how unfair it was that I spent my Christmas break getting blood drawn while my friends were back home goofing off at the local shopping mall. (Someone give me an Academy Award, right?).

If you ask a classroom full of kindergarteners what they want to be when they grow up, you’ll hear: “Firefighter!”  “Policewoman!”  “Doctor!”  “Mom!”  “Dad!”  “Astronaut!” and other ambitious goals called out.  You probably won’t hear “Patient” mentioned.

Being a Patient is not an occupation one normally chooses; rather, we are chosen.  And we rise to the occasion.  (Yes, Grammar Police, Patient deserves a capital “P” because it is a 24/7/365 job and it takes incredible strength to play this part).

When I was almost three years old and my biggest concern was building snowmen outside, diabetes chose me.  While my parents handled the majority of my care in childhood, I was simply along for the ride.  Now as an adult tasked with keeping myself alive despite a rebellious pancreas each day, I do have a choice: to sit back and get dragged by my hair when the diabetes roller coaster comes barreling towards me, or to take a deep breath and give it my all as a Patient.  It just sort of happens that this fight becomes a part of your heart and soul.

Whether used in the context of diabetes, cancer, arthritis, heart disease, or simply a head cold, the term “patient” can carry a negative connotation in some regards. Patient? You must be sick, then? You might be lower on the totem pole of power than the doctor, nurse, or other health care providers treating you at the office? You are not as “in control” as you would like to be? Perhaps that control is in someone else’s hands at your medical appointments?

Let’s look on the positive side for a minute, though. (See ya, Negative Nancy!) Being a Patient is empowering. Look no farther than the diabetic online community (DOC) if you need any concrete evidence. We are more than the “patient as an occupation” title. We are pillars of strength for one another while balancing our other jobs in life. Playing the role of the Patient is part of us, and this purpose in life is something to embrace. Even if one day that elusive cure finally gets figured out by a brainiac doctor, I believe that our hearts will not change; we will continue to be Patients, whether for our own health situations or for those of others who need our assistance, no matter the medical conditions.

Fighting for my health has become such a part of my life that somewhere along the journey I fell in love with advocating for myself as the patient, with giving it my all and expecting to get the same effort back from my health care team. In recent years I have taken on a more active role as the Patient: printing out my own continuous glucose monitor (CGM) charts prior to my appointments and eating lunch with one hand while clutching my cell phone to my ear with the other hand- briefing my insulin pump representative on what I believe to have identified as a product defect.  You get the picture.  I’m involved in my health care, to the point where some days I wear myself out obsessing about a disease that can indeed be tamed, but never completely tied down.

As I drive away from my endocrinology appointments, I often wonder, How do they do it? How do my doctors and nurses maintain composure while they comfort us in the face of human suffering each day? But there is also more to that story. There is the Patient who is on the receiving-end of the suffering, too. Perhaps doctors and nurses go home and wonder, How do THEY do it? How do our Patients fight that battle each and every day? The simple answer is that we all do it. We put on our game faces and we march on, even on the bad days. We do this for ourselves and for each other- for the respective roles in life that we all play, whether Doctor, Nurse, Patient, Caregiver.

Being the Patient is hard work.  It requires blood, sweat, tears, urine labs, lack of sleep, hunger, thirst, and more tears.  It also requires humor and perspective if one is to keep on, keepin’ on. Honesty is the best policy, but it is also a vulnerable one.  “This is where it hurts” gets caught in my throat many days. Sometimes it is easier to hike up my shirt to show my doctor a bruised insulin pump site than it is to tell her about the other types of pain- about why too much or too little insulin keeps me in a mental purgatory of sorts.  When she touches at that particular pain, I might not stand as still and as stoic as I do for the needles.

While it hurts to fully-disclose our insecure thoughts, letting the wall down for a moment is part of being fully-invested as a patient. Doctors and nurses cannot thoroughly help us unless we allow them to do so. Engagement is a two-way street. It starts with vocalizing what’s on your mind so that you and your doctor can make a strategic plan. It may not always be, “This is what hurts.” It may be, “This is what works. How do we make it even better?”

Recently, my internal mantra when I go to see my doctor is try to be honest with your feelings. Not in the sense that I ever maliciously lied to doctors before, but more in the sense that perhaps I was not yet ready to be open and to expose all of my struggles previously. Maybe I was so hung up on tweaking my overnight basal insulin rates that I was disregarding that my breakfast boluses were in need of immediate assistance? Even if I have to begin with small, “baby Tylenol” doses of readiness, starting somewhere counts for a lot more than never starting in the first place.

 

“So, Doctor. My name is Ally. I am your Patient. And this is where it hurts…”

November: 166,650.

WDD 166,650

Diabetes Awareness Month is finally here!  I’ve stocked up on blue apparel and drafted, re-drafted, deleted, expanded, and re-visited my Facebook status updates, tweets, and so on for World Diabetes Day on November 14.  Being new to the diabetes blogosphere/social media arena, I feel the importance of November, and specifically November 14, more so than I may have in the past.  This is our day and our month. I’m clearly biased here, but I do not believe that diabetes gets its fair share of attention in society and in the media. Take a gander at my diabetes rant if you want my heated feelings on the matter.

I am truly happy for other organizations and causes that garner lots of fanfare during their designated months and days. Seeing the State House lit up in pink for breast cancer awareness month in October as a simple gesture of solidarity for the cause always puts a smile on my face.  My siblings’ delight in dumping ice water all over me for the ALS Ice Bucket Challenge is a fond memory for our family, and it is also a reminder of those very brave individuals who battle an insidious disease every day.

As human beings, we all suffer. Lots of us have health conditions; others, financial troubles; some, relationship issues; many, a mix of a multitude of things.  Connecting as human beings to support one another in our moments of pain and in our moments of triumph against such pain is all part of the human connection.  It is time to make that connection happen for diabetes, and the diabetic online community is certainly capable of moving mountains to do this.

There are various creative diabetes awareness efforts going on right now. I am all for anything that supports diabetes in a positive way, and I truly enjoy participating in various efforts when time permits me to do so.  However, we are also a bit fragmented as a group- not because we want to be, but because the options are too vast and our passions for advocacy too wide and multifaceted.  This is not necessarily a bad thing.  It speaks volumes about us as an intuitive, determined community.  We are always salivating over new and improved ideas for advocacy.

Rather than making things more complicated and diluting the already-expansive efforts to raise awareness, I’m going to put a simplified twist on an old diabetes advocacy message. We have all seen those posters outlining how many injections, pump site changes, finger pricks, etc. that a diabetic has endured over his or her lifetime.  Those posters always knock the wind out of me- no matter how old the person holding up the sign may be.  There is a universal truth to these visual aids: One shot is one too many. If we cure diabetes, there will never be another “first shot” of insulin for so many out there whose islet cells may one day rebel.  Sadly, as we all know, the shots are sometimes the “easiest” part when it comes to diabetes.  Again, #1ShotIs1TooMany.

We can live in a world without diabetes.  It is a matter of hard work, advocacy, financing, and research.  As the doc, we already know the ropes when it comes to informing others about our daily lives with diabetes.  But those who do not live it firsthand- who do not wake up at 3:14 am to change failed pump sites, who do not feel the burn of injecting into scar tissue, who do not wipe their child’s tears during a bad low blood sugar- have perhaps not been exposed to the reality of diabetes.

My tactic is simple: “Shock and awe” is good, occasionally. From a marketing perspective, tease your social media followers a bit.  Engage them by throwing out the line and seeing if they will bite.  I plan on posting my picture with the blue diabetes awareness circle etched in using the World Diabetes Day app.  In Paint or a similar program, I will then write in blue the number of needle pokes I have endured over 23 years as a type 1 diabetic.

As an anxious person, there have been times in my life where I would perform blood glucose tests upwards of 25 times per day, so my number of pokes is quite large, and it is most likely an underestimate. To figure out my number, I scribbled crazy mathematical break-downs to include “hundreds of shots in this timeframe, then switching to the pump during this year, then testing more or less, etc.”  The final number- 166,650– is my very best educated guesstimate.  What are your numbers? We are all so much more than the daily pokes and prods, but they have also permanently marked us as strong individuals. Let’s celebrate this concept with others, and let’s vow to find a cure so that the next newly-diagnosed person is not sentenced to years of replicating our needle tallies.

When people chomp at the worm on the end of the hook, I will clue them in as to what diabetes is all about. I will explain how it is not caused by cupcakes, how much it pains me to see the worry on my friends’ faces on the bad days, and the other ins and outs of taming a sadistic autoimmune beast every day.  Then I will tell them about the good stuff: the #doc, #dsma, the doctors and nurses who have refused to give up, the fact that it is not too late to work towards a cure.

When it comes to advocacy this month, do what works for you; support the message that resonates with your own diabetes struggle. If you hear a diabetes joke at the local ice cream shop, politely inform the misguided comedian that his material is outdated based on modern science.  Foster a conversation about diabetes with someone who may be misinterpreting what it means.  Wear blue.  And wear your heart on your sleeve while doing so.