The Health Care Debate

I suspect that some of you may have wondered where my head is on health care this year.  Sorry for the delay, but it has taken me until now to be ready.  I don’t like to mess with politics.  And even though I have private insurance today, this is really very personally important.  I don’t often get truly angry, but there have been a couple of moments of rage during the discussions this year that are very much about me and my fear about what’s ahead.

Type 1 is a pre-existing condition.  It’s also an auto-immune disease that cannot be prevented and has nothing (ever) to do with lifestyle choices.  Prior to passage of the ACA, it made patients uninsurable, or made it so that they needed to pay gigantic premiums and deductibles that were out of reach for many.  Fortunately that hasn’t affected me yet.  I’ve never received Medicaid and I don’t get my insurance through the ACA.  For the last 20 years I’ve been covered through employer plans and before that I was in school for so long that I made it almost to 26 on my parents’ plan.  I don’t expect to always have insurance through work because like most of you, I hope to retire one day.  But no matter how much I sock away into my 401k, I don’t know how or when that will be possible.  Depending on what happens in our government, I could become uninsurable.  Or insurable at a cost that makes insurance a near impossibility.  Here’s the catch:  I’m healthier than most people I know.  I’m healthy, but I have a disability (did you know that?).  I’m sick, but I rarely miss a day of work for as much as a cold.  I didn’t cause this, but there are politicians and others who would tell me that I’m in this situation because I haven’t taken responsibility for my health.  How does that make sense?

From my perspective I’m no more deserving of medical care than a single mother working for minimum wage to support her family.  I’m also no less deserving of medical care than someone who brings home a million dollars a year.  I didn’t cause this, I couldn’t have prevented it, and there’s no way to make it go away.  I’m not asking for anything free.  I’m asking for the same unalienable right to “life, liberty and the pursuit of happiness” that applies to everyone else.  To all of us, not just those who were lucky enough to be gifted with perfect health.  If you were, enjoy it because you never know what will come tomorrow for you, your family or your closest friends.  And then what?  What happens when you realize that you probably should have known to chose a career paying 2 or 3 or 10 times what you always thought was enough?  It’s a terrifying prospect for people like me because without insulin, I’ll lose my life.  That’s not a hypothetical, that’s an inevitability that comes down to a matter of days or weeks.   It terrifies me to think of kids with T1D, or cancer, or anything else, who were diagnosed before responsibility was a word in their vocabulary but could wind up uninsurable.  I don’t have the solutions and I don’t claim to.  But there has to be a better answer.  When you hear the debates about health care, think about all of the people closest to you in life.  Then think about whether or not they’ve made it this far without being diagnosed with something.  You may realize you don’t know many with that kind of luck.

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Below are some of the quotes that have been distributed within the T1 community about health care and/or diabetes in the U.S. (all underlined emphasis has been added by me):

• From Alabama Representative Mo Brooks in a May 1 interview on CNN, the ACHA that was debated earlier this year would “allow insurance companies to require people who have higher healthcare costs to contribute more to the insurance pool that helps offset all these costs, thereby reducing the cost to those people who lead good lives, they’re healthy, they’ve done the things to keep their bodies healthy. And right now, those are the people who have done things the right way that are seeing their costs skyrocketing.” 
• I’m a good person, I’ve done many things to stay healthy, and I still got sick.  I promise you my costs have skyrocketed from where they were 5 years ago but I didn't cause that.
• From Vice President Mike Pence in a Tweet on June 24:  “…we’ll repeal/replace Obamacare w/ system based on personal responsibility, free-market competition & state-based reform.”  He subsequently tweeted, also on 6/24: “That’s the Republican way.  That’s the American way.  And, that’s the way we’re going to reform health care in the 21^st century.”
• I take a great deal of responsibility for myself and my health and my life.  I wish Vice President Pence supported a health care plan that would insure me.
• On June 28, Iowa Senator Thomas A. Greene commented on a Des Moines Register Facebook post about the high cost of insulin saying “Most patients diagnosed with diabetes can control their onset with proper diet, exercise, and weight control. If that fails, then generic medications are next. Personal responsibility is the 1st step.”  When commenters responded to the senator clarifying that type 1 diabetes is not a lifestyle disease, the senator responded “I’m a Pharmacist (sic), I know the facts. I practice in retail pharmacy. I see the patients everyday (sic).”
• This is just another example of the ignorance about Type 1 (and often) Type 2 diabetes.  Not only can I not control my disease with diet or exercise, there’s no such thing as generic insulin.  And again…I’m taking plenty of responsibility for my own health.  Why do we keep blaming people for their diseases?
• From Fox contributor Brit Hume:  “If you want to be one of us, you have to carry your own weight and take care of yourself. You do that by being careful about what you eat, how you spend your time and how you conduct yourself every single minute of every single day. If you’re at a point where you’re both poor and you get sick, it’s your own fault. Nobody made you sick out of nowhere. You’re the only person responsible, you did that to yourself by not taking care of your health. And if you aren’t willing to take the time and effort to pay attention to the choices you make every single day of your life, why should the government?
• I take great care of myself, sir.  And I got sick out of nowhere.  I guess if I combined that with being poor you’d tell me I don’t deserve insulin.
• From President Trump, talking about Supreme Court Justices he expects to replace during his presidency:  "Sotomayor," Trump said, referring to the relatively recently-appointed Obama justice, whose name is rarely, if ever, mentioned in speculation about the next justice to be replaced. "Her health," Trump explained. "No good. Diabetes."
• I’m sure you can imagine how much I disagree with this statement.  Rather than discuss it I’ll give you this link to a story about Justice Sotomayor talking to a group of Type 1 kids several years ago and telling them about her experience growing up and living life with T1.  She's the 3^rd woman appointed to the Supreme Court and was diagnosed with T1D when she was 7 years old.

48 Hours with Type 1

Since November is National Diabetes Awareness Month in the U.S., there are all sorts of ways that people find to try to show the magnitude and impact of Type 1.  For example, last year I saw several pictures of pumpkins painted blue for diabetes awareness, with a month's worth of syringes sticking out of the pumpkins.  This year I saw an idea from the mom of a T1 kid that really struck me:  she asked her friends and family to volunteer to get a text from her for one day, every time she did anything diabetes related.  My first thought was "what a great idea," promptly followed by my second thought, "there is absolutely no way."  I wouldn't do that to anyone, but I realized I could approximate it by tracking all of my T1 moves and decisions through an entire day.

I deliberately chose a "normal" day, where I went to work as usual and ate only the foods that I cooked myself and eat regularly.  Since T1 isn't predictable, the day I picked was wildly out of control, largely due to a bad CGM sensor.  To give you comparison on how insane Monday was, I tracked a second day that I hadn't planned.  This is 2 days in the life of my Type 1.  To the people I might have asked to receive those texts all day...you're welcome!

Monday, 11/28:

• 4:02 AM:  High alarm showing 157.  Finger poke showed 185, and I gave a 5 unit insulin dose.
• 5:41 AM:  Low alarm showing 58.  Finger poke 82, so I recalibrated in the Dexcom app to correct the reading.
• 5:56 AM:  Low alarm of 56.  Based on the alarm 15 minutes earlier I did something I've never done before:  I closed the Dexcom app so I could go back to sleep, and took off my Pebble watch so I could avoid the vibrations telling me there wasn't a Dex signal.
• 6:50 AM:  Wake up and reopen the Dex app.  Finger poke showed 54, so I ate 2 glucose tabs to correct.
• 6:58 AM:  Respond to check in text from first line of defense Dex-watching friend.
• 7:16 AM:  Respond to check in text from second line of defense Dex-watching friend.  Dex shows sugar is 69 and climbing.
• 7:46 AM:  Pack D supplies in purse and check watch to see 97 before leaving the house.
• 8:26 AM;  Unpack D into my desk.  Finger poke shows 118 vs. CGM 10.  Recalibrate Dexcom, give 1 unit insulin to correct and 2 for breakfast.
• 8:50 AM:  Log breakfast in MySugr app.
• 10:42 AM:  Check Dex trend, currently 100.
• 11:16 AM:  Watch shows 122, finger poke 159.  Recalibrate again and take 3 units.
• 12:02 PM:  Dex has 125, finger poke is 112.  No recalibration, dose 3 units for lunch...ugly bleeder for this one!
• 12:33 PM:  Log lunch in the MySugr app.
• 1:46 PM:  Dexcom shows 104.  No finger poke.
• 1:59 PM:  Before leaving my building to drive to a presentation in another building, Dexcom shows 104, finger pokes are 86 and 91.  Recalibrate to be safe before long meeting.
• 4:56 PM:  Unpack purse at home and move insulin back to the fridge.  Dex shows 66, finger pokes are 86 and 82.  Recalibrate.
• 5:10 PM:  Insert new Dexcom sensor replacing 8 day old sensor gone bad.
• 7:12 PM:  Calibrate new sensor with tests of 123 and 126.  Dose 2 units correction and 3 to cover dinner.
• 7:29 PM:  Log dinner in MySugr app (pork rind breaded chicken tenders!).
• 8:46 PM:  Urgent low glucose alarm 54, finger pokes 83 and 76.  Recalibrate.
• 9:21 PM:  Urgent low glucose alarm 51, finger pokes 72 and 75.  Recalibrate.
• 9:25 PM:  Give nightly basal dose of Toujeo.
• 9:55 PM:  Urgent low glucose alarm of 49, finger shows 80.  Recalibrate.
• 10:57 PM:  Dexcom shows 121 and rising, finger poke is 91.  Recalibrate.
• 11:30 PM:  Admit surrender on new sensor and replace with a second new sensor.
• 11:40 PM:  Finger poke is 112, dose 1 unit before bed.

Tuesday, 11/29:

• 2:33 AM:  Calibrate new Dexcom sensor with results of 95 and 98.
• 6:08 AM:  Dexcom shows 206, finger poke is 118.  Recalibrate and dose 1 unit.
• 7:00 AM:  Pack D gear for work.
• 7:33 AM:  CGM shows 106, finger poke 110.  Dose 2 units for breakfast and 1 correction.
• 7:51 AM:  Log breakfast in MySugr.
• 9:20 AM:  Dex shows 93.
• 9:54 AM:  Dex is 89, finger poke 91 before heading into a 2 hour meeting.  Glucose tabs into my pocket.
• 12:11 PM:  Dex is 90, finger poke 89.  Dose 3 units for lunch.
• 12:30 PM:  Log lunch in MySugr.
• 3:01 PM:  Phone died during 2:00 meeting showing 119.  Finger poke 119, dose 1 unit.
• 3:15 PM:  Afternoon snack, log in MySugr.
• 4:40 PM:  Check before yard work shows 73, eat 3 peanut butter M&Ms to prevent a sugar drop.
• 6:31 PM:  Dex requests 12 hour calibration.  CGM 108, finger poke 130.  Dose 2 units.
• 6:55 PM:  Dose 3 units before dinner.
• 7:14 PM:  Log dinner in MySugr.
• 8:15 PM:  Nightly basal dose of Toujeo.
• 9:06 PM:  glance at watch, shows 104.  Recalibrate after finger poke of 94.
• 11:22 PM:  Finger poke 96, Dex 93 before bed.

That's a rough snapshot of what T1 looked like for me over 48 hours.  I'll admit that I check my sugar either on my wrist or on my phone a ton, but I didn't write it down most of the time because it felt ridiculous.  I ate the same meals both days, but you can see I had different results in terms of insulin needs and glucose readings, plus I checked my sugar with finger pokes far more times on Monday due to maddening technology failures.  This is what makes T1 so frustrating at times...same behavior, different result.  Even on a much calmer day like Tuesday, taking care of things is never far from my mind.

FYI:  when I check my watch, I'm still checking the Dexcom.  The sensor on my arm transmits to my phone and that transmits to the watch.  It's just another way to see where I am and is far more subtle than checking my phone.  Every time I do a finger poke, take insulin, or eat anything...I log that activity in an app called MySugr so I have history available on how many units I took for different meals and what happened after that meal.  Data!

The picture is what I use to insert a new Dex sensor.  I accidentally set this one off one day making it useless as anything other than an example.  I'd never seen the needle itself before and didn't realize it was so long.

More of the T1D You Don't See

To go along with pictures I posted to Facebook recently for JDRF’s #T1DYouDontSee campaign, I put together a list of some of the other things that most people don’t see about Type 1 Diabetes.  I have little doubt this list is incomplete but it’s not bad.  And so, here are my things about T1 that most people don’t see: 

• Waking up in the middle of the night sweating and shaking from low blood sugar, wondering how bad things are and how long you’ll be up this time.
•  Finger pokes that turn into geysers and the blood spatter evidence of an assault they leave behind.  Evidence on my clothes, on my furniture, and one time…somewhere in the Planet Fitness locker room.  I really couldn’t figure out where my blood went!
• Stares from curious people watching sugar checks and insulin injections who are nosy enough to watch but not comfortable enough to ask.
• Math followed by more math.  What is my blood sugar, what and when did I eat last, how much insulin is already working in my blood stream, what am I about to eat, how many carbs am I eating, how much protein am I eating, what time am I going to the gym, where do I want my blood sugar to be in an hour, 2 hours, 3 hours, how much insulin do I need to take to try to get me there?
• Spending 3 to 4 hours every weekend cooking because life is easier when you know exactly what went into every meal.
• Wondering where the chef in a restaurant hid the sugar in dinner that led to a 250 BG.  Especially when all you ate was a plate of meat.
• The absolute horror when your doctor suggests he’d like your sugar to be higher on average, because he’d feel like you’re safer that way.  No, no, no.
• The joy of feeling like you pulled “it” off…whether “it” is a new best A1c, a new low carb recipe, dosing well for Chinese food, or a precise recovery from an unexpected high or low.
• How amazing it is to have people that love you enough to accept the 2 AM CGM alarms that keep you safe…even when sometimes those alarms are false.

What you don’t see is how much time, thought and energy go into trying to not just to stay alive, but to live well.  T1D has become my way of life, but that doesn’t mean it’s the life I’d choose.  We need a cure.

Please Help!

This isn't a post about living with Type 1 diabetes...not exactly.  It's a post about a hockey game.  I grew up in Detroit and became a hockey fan in high school when I first read an article about a young Steve Yzerman in the local paper.  I remember sitting in my parents' bedroom watching Red Wings games because nobody else in my family wanted to watch.  I learned the game and its rules and fell in love with a sport I'd never seen on a 13 inch TV long before flat screens or HD.  I cried in 1997 when they won the Stanley Cup, I may have cried again the next year when they won.  Last spring I looked at the replica jersey below for several weeks before I decided to order it, a decision I do not regret.

A couple of years ago, I learned that we have an AHL hockey team in Cleveland.  I'd been oblivious until then even thought they've been here since 2007.  A friend and I went to a game on a whim and she was hooked on a sport she'd never seen.  Since then we've become partial season ticket holders and were in the arena when the Monsters won the Calder Cup in 2016 - a lifetime highlight that neither of us will ever forget.

What does any of that have to do with T1?  That same friend and I are participating in the local JDRF One Walk this fall to raise money for the search for a cure for T1D.  At a walk kickoff event, the father of a T1 child suggested that the best way to fundraise is to involve something that you're passionate about.  Voila, we had an idea...let's run the 50/50 at a Monsters game!

A great idea, sure, but it doesn't come without a cost.  To be allowed to do the 50/50, we have to sell 200 tickets to that game.  Yes, I said 200.  The tickets are discounted, they come without any of those annoying convenience fees, and a portion of every ticket sold is donated directly to JDRF.  And if that isn't a sweet enough deal, every ticket sold will be entered in a drawing to win our 2nd row seats on 10/21 and 11/25.

We're selling tickets for $15, $20 and $25, and each ticket is roughly a $13 discount from what you'd pay buying directly from the team.  If you're in Northeast Ohio, please consider buying some tickets and supporting us - both JDRF and your favorite person with T1D.  If you aren't available on October 21 you can still donate at our walk page here.  Please share this with any friends you have in the area who might also be interested, because we need all the help we can get!  We have an event posted on Facebook at this link, and you can easily share it with your network from there.

If you'd like to be more hands on, we NEED people to help us sell 50/50 tickets during the 1st and 2nd periods and you can still sit in your seat to watch the exciting 3rd period and cheer for the Monsters!  Whether you're a committed hockey fan or you've never seen a game in your life, I promise you won't be disappointed.  

Thank you for reading. 💙

What Scares Me

Much of what you hear associated with any kind of diabetes diagnosis is the potential for horrific health events.  Heart disease, eye problems and of course the “shooting, burning pins and needles of diabetic nerve pain” that we hear about in TV commercials every day.  What scares me?  Maybe not the things you’d think.

My greatest fear is having a seizure due to low blood sugar.  If you knew me then or have since heard about my seizures after a head injury in high school you’ll likely understand why.  It hasn’t happened yet and many people with T1D go through their lifetime without getting hit by a seizure.    It’s my single most active concern above and beyond any other short term problems.  I hate reading stories about people with T1 experiencing low blood sugar seizures and I’m conscious of the risk nearly every time I go low.

Long term I naturally worry about all of the possibilities.  But the one I mention most frequently is amputation.  As hilarious as this sounds and as much as it makes me chuckle to talk about, this is no joke.  I have tiny feet.  Elf feet, as some friends refer to them.  I’ve seen what it looks like when someone with T1D loses their toes.  If I lose my toes my stumpy little feet will be practically useless.  I’m already lucky the little things are just big enough to operate a gas pedal.  If I lose my toes I’ll be in trouble! J

Am I afraid of dying?  Not death itself, I don’t think.  It’s coming one day whether I like it or not.  I’m afraid of dying before I’m done.  I’ve got a lot left to do and I’m nowhere near done yet.  So I’m sticking around.  What do I need to do to say I’m done?  Check with me in 40 years and I’ll let you know if I’m there yet.

Want to know what really scares me, far beyond anything T1 can throw at me?  Spiders.  There is no greater comedy than watching me jump out of my skin when one of those 8 legged monsters appears in my house.  They’re a much more urgent threat than anything diabetes can throw at me.  I’m independent, I’m strong…and I’m compelled to execute any spider that dares enter my house.  After my heart rate returns to something close to normal, anyway.

Suddenly I have this urge to order these fabulous slippers…with bells on!

I Had a Day

A little before 8:00 on Friday night after a low glucose alarm on my CGM, I texted my friend “I am having a day” and she immediately responded “yes you are.”  Friday was one of those maddening T1 days where it felt like I couldn’t win. 

The fun started around 1 AM when I got my first low alarm of the night.  Low alarms happen when my continuous glucose monitor, the CGM, thinks my blood sugar is 55 or less.  When the alarm jolts me out of bed I head straight to the bathroom and check with a finger poke to confirm and decide what I need to do next, if anything.  The early hours of Friday morning were no fun at all, as you can see here:

• 1:07 alarm, finger poke 75 and recalibrate the CGM to correct the reading.  Back to bed.
• 1:26 alarm, finger poke 67 and eat 6 peanut butter M&Ms.  Recalibrate and go back to sleep.
• 2:36 alarm, finger poke 71 and recalibrate before going back to bed.
• 2:47 alarm, finger poke 67 and eat a glucose tab before recalibrating and heading back to bed.

After the fourth alarm my body and technology let me sleep through the rest of the night and I woke up at a perfectly healthy and reasonable 81.  Hooray!  Why was I dropping?  I don’t know.  Why was the CGM overreacting?  I don’t know that either, but if I was lying on top of it that could be a factor.  “Compression lows” are an actual thing and a major opportunity for improvement at Dexcom!

Unfortunately the overnight sleep disruptions weren’t the end of my adventures for the day.  You see, schedules and timing are a big part of keeping things level and my schedule changed on Friday afternoon.  Mid-afternoon I had some blueberries and blackberries along with a little insulin to cover the sugar in the berries.  No problem.  And then…my boss very generously sent us home early to get a head start on the weekend.  I happily headed out around 3:30 and went to the gym.  Why was that a problem?  I hit the gym with 2 units of insulin in my body and cardio makes your body more responsive to insulin.  Normally I would have left work at 5:00 or later, putting that insulin farther in my rear view window.  I was at 70 in the locker room and took a glucose tab before my workout – I’d also had half a protein bar in the car, so figured all would be good.  Wrong!

The low alarm went off while I was on the stationary bike, shortly after I’d thrown back another glucose tab.  I added a third tablet and then a fourth because although I didn’t feel low, I wanted to be safe.  I’m fighting shin splints and have been doing my cardio time on a bike instead of a treadmill this week – I’m learning, not quickly enough, that cycling impacts my sugar much faster than walking does.  I cut my time on the bike short and walked on a treadmill for a bit before calling it a day.  My finger poke in the locker room after 40 minutes of activity and 4 glucose tabs (16 carbs) was 130 at 5 PM.  What?  That’s higher than I like to be and I figured I was climbing, so I took 2 more units to cover where I was and where I suspected I was heading.

And…a little before 7:00 my low alarm went off again.  Ugh.  Another glucose tab, another “I’m not dead” text to my friend and I moved on with making a “fat head pizza” for dinner.  An hour later we got another low alarm and I sent my “I am having a day” text.  Another hour later, I ate a 5 carb tiny Milky Way for my final correction of the night.  Fortunately, that was the end of the madness.

I went to bed with my blood sugar at 127.  I took 1 unit to get that closer to 100, but didn’t go any further because I wanted to sleep through the night!  It was a day.  I never overcompensated and wound up crazy high, but I was a little too tight about avoiding the high and wound up spending much of my evening low as a result.  It’s a balancing act, and while things like random overnight madness and schedule changes are out of my control, being a touch too aggressive on keeping my numbers down is within my control.  Does knowing that mean I’ll never have that kind of day again?  Not a chance.  But every T1 “day” gives me a better shot next time. 

Why Me?

Why did I get Type 1 diabetes?  The short answer to what seems like an obvious question is that I have no idea.  It’s also not a question I’ve really asked with an eye toward understanding “why did this happen to me?”  That feels like something I would have been likely to ask my parents in tears and frustration if I’d been diagnosed as a kid.  As an adult it’s not something I wonder about, because I know Type 1 isn’t my fault, and “why did the universe do this to me” isn’t something I typically ponder.  The more common question and one I’ve been asked repeatedly is “how did this happen?”  What caused a seemingly healthy 42 year old woman with no family history of T1D to wind up with this disease?  The answer to that one isn’t as short, but I have a guess.

In the last few years I’ve heard 2 different speakers explain the belief that the biological changes that can eventually lead to a T1D diagnosis are present in the body as early as 2 or 3 years old.  If the right trigger comes along after that day, your immune system attacks the insulin producing beta cells in your pancreas.  That attack means it’s just a matter of time before you get handed your first insulin prescription.  Don’t encounter something that triggers the attack and you never hear about Type 1.  What are the triggers?  It can be a virus, some sort of toxin, or something yet unknown.  I’ll never know for sure what made my body decide it needed to kill those vital beta cells.

People who know my medical history in recent years have often had the same guess about what could have led to T1.  It’s an antibiotic called Avelox.  In 2010, I took one dose of that medication and it set off a body-wide chain reaction in what is called “Fluoroquinolone Toxicity Syndrome.”  Within an hour I lost feeling in my feet and hands and went to the ER where I was handed a new prescription for a “more appropriate” antibiotic to treat a cough.  I was also told the numbness and tingling could be addressed with Benadryl and would pass within days.  Instead the reaction spread and I developed muscle spasms, insomnia, tendonitis, anxiety…the list of symptoms covered me from head to toe.  A neurologist diagnosed me with MS, a rheumatologist diagnosed me with arthritis, and after MRIs, x-rays and more vials of blood than I can count, no doctor could explain what I was experiencing.  But they all assured me it was impossible for an antibiotic to cause my issues.  I found online communities full of people around the world having the same reactions, many of them so severe the people became disabled.  (If you want to learn more, “Certain Adverse Events” is an amazing film on the subject of these medications and the FDA approval process.  The stories are heartbreaking and infuriating.  Get it on YouTube or Amazon.)  The FDA has since added several “black box” warnings to this class of medications, including one warning that a single dose can cause permanent neuropathy – the symptom that I continued to have for years.  Is it unreasonable to think the damage the Avelox caused could have extended to my T1D diagnosis 4 years later?  I don’t think so.  I’ll never know and it doesn’t matter, but I believe the odds are good that the pharmaceutical industry led me here.  An antibiotic may have been the toxin that triggered a reaction that was hiding in my genes for 40 years. 

In other news, tomorrow is my third “diaversary.”  3 years since I was diagnosed with Type 1 Diabetes.  In ways my life is exactly the same today as it was that terrifying day.  At the same time I feel like everything in my life has changed.  Why did this happen to me?  I saw a video this week from Team NovoNordisk, a professional cycling team composed entirely from diabetics.  One of them said he got T1 “because it was my turn.”  That’s as good an answer as any.  Life happens.  This happened to my life, and I can either deal with it or die from it.  Maybe this happened because I can handle it.  Maybe because I needed a challenge, or maybe because the world needed another voice to stand up and educate people about Type 1.  Maybe it happened for no reason at all.  Whatever the reason or reasons, I’m celebrating another year of surviving.  I’ll celebrate each of these anniversaries until the researchers working on this disease find us a cure.  Then I’ll have an incredible new anniversary to celebrate.

I refilled most of my prescriptions this week...here's the fully stocked "D cupboard" in my kitchen.  CGM sensors, protein bars and candy, needles, test strips, glucose, alcohol wipes...I could really use this space for kitchen things!

We Did That!

I’m not athletic.  I know, that statement isn’t a surprise to anyone who’s known me in the last 30 years.  10 year old softball Dana would probably be pretty disappointed at this discovery, but 45 year old me is OK with it. Why does it matter that I’m not an athlete?  Because this post is about putting a bow on finishing my 3^rd half marathon.  Like a lot of people I have an image in my head of someone who does long distance races, and I’ve never looked like that person.  I do it anyway.

After this year’s race we made a list of the highlights from our experience.  The first one wasn’t actually on that list, which is one of the coolest things about me writing it down – my Type 1 was a non-factor.  This is the first race we’ve done since I got my CGM, so we had no need to worry about stopping to check my sugar.  The end result of that is that neither of us really thought about me.  Every now and then I’d look at my watch to check my digit and that was all.  I wasn’t high, so I didn’t need insulin.  I wasn’t low, so I was safe.  The focus was on the race, on getting through 13.1, and on our shared achievement.  That’s exactly how it should be.

The race itself was an adventure and another unique experience.  We saw a woman running barefoot right from the start, and firefighters running in full gear.  We interacted with more walkers than we’ve ever seen before, and shared an experience with several of them when a total psycho thought he could ignore barrels and cones to drive down the course that we were all racing on.  Three times.  We had several full marathon runners near the end of the race come up behind us and shout encouragement…when they’d already run about 25 miles in the time we went 12.  As we have every year, we found the fans in Tremont handing out little cups of beers to the racers.  5 miles was a long time to wait for that sample!  We got an incredible laugh at a fan wearing only a royal  blue Speedo and a smile while he lifted a sign that said “Shut Up, Legs” somewhere in the 10-11 mile area.  We found a water stop volunteer with a pitcher who refilled my friend’s backpack with water, a helping hand without which we wouldn’t have made it to the end.  We went past a random fan offering up a bowl full of ice cubes to cool us off as we went by, and another volunteer offering to hose people down.  And we enjoyed the most supportive crowds of the 3 years we’ve done this race.  Cleveland came out in force for the 40^th annual marathon, and that helped us too.

We finished in pouring rain, and very few drinks have tasted as good as the free beer we collected at the end and drank huddled under a mostly useless tree.  This is hard, and we haven’t had a race that didn’t present its own list of challenges.  We didn’t hit our time goal, finishing 4 minutes behind last year’s pace.  But we finished, and there were a few times that we both doubted whether we’d make it that far.  We’re not athletes, but we finished and we finished strong.  Next year we’ll still be aiming to finish in less than 3:30, and I wouldn’t bet against us.  

Diabetes Blog Week - There's More Than Diabetes

Blog week day 5!  When I signed up I wasn’t sure I could put together 5 coherent posts over the course of little more than a week.  I don’t know if they’ve been completely coherent, but there have been 5 and I’m pretty happy with them.  Thanks for reading, I hope you’ve enjoyed them and maybe even learned something.  I’m already looking forward to next year!

The final topic for this year:

Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with.  Share an interest, hobby, passion, something that is YOU.  If you want to explore how it relates to or helps with diabetes you can.   Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes! 

I’m a lot of things beyond a Type 1 Diabetic.  I’m a daughter, a sister, an aunt and a friend.  I’m an analyst and a mentor.  I’m a crazy screaming fan of the Detroit Red Wings and Tigers, the Cleveland Monsters, and I proudly call myself a Michigan Wolverine.  Go Blue!  I’m a passionate advocate of a low carb way of eating (with or without D) and I’m an increasingly passionate Type 1 Diabetes advocate.  And this weekend, for the third time I’m a half marathon walker.

In 2014 a friend and I walked our first half.  She was roughly 7 months removed from finishing treatment and earning the title of “breast cancer survivor.”  We were completely unprepared and made it through the race only because we were too stubborn to fail.  Shortly before that race I was diagnosed with Type 2 Diabetes.  Soon after the race that diagnosis was corrected to Type 1 Diabetes and I started my journey through chronic illness and insulin dependence.

Last spring we walked our second half.  For the first time we carried insulin, needles, test strips and a glucose meter.  The weather that day included all 4 seasons:  we had rain, sleet, hail, snow and sun.  We also improved our initial result by an inconceivable 38 minutes!  I was so emotional about our time and completing my first race with T1 that it was all I could do not to let out a sob as we approached the finish.  Not from sadness, but from relief and joy and pain.  At the first race we were grinning like maniacs at the finish; last year I was grimacing and trying to smile with tears running down my face, a confluence of truly confusing emotions.  It was so cold all morning that I still couldn’t feel my hands when they took this picture after the finish.  The tears were gone, though!

This Sunday we’re walking our third half marathon.  I wouldn’t say we’re completely unprepared, but we’re not where we’d like to be.  We haven’t been as prepared as we want to be yet.  But we’re strong and we’re stubborn and we know now that we can make it through 13.1 miles.  This time we’ll have the advantage of a CGM sending my glucose readings to a Pebble watch on my wrist so that we’ll know at every minute how my sugar is doing.  And we’ll have the incredible benefit of having survived this experience twice.  Two times isn’t a fluke, so short of some unspeakable accident we’ll complete race number 3 in just 2 days.  I’d be doing this with or without T1D.  But doing it this way adds a degree of difficulty and makes the achievement that much greater.   It’s part of my fight and part of my daily victory over this disease.  No matter how much it hurts, this time I’ll be smiling again at the end because we’ll both have earned it together.  

Last year we walked in honor of, and as fundraisers for JDRF.  This year we’re walking for Make-A-Wish in honor of a Princess Warrior named Paige.  

Want to learn about the other bloggers who participated this week?  Find all of the links here.

Wondering what you’ve missed in my blog?  The links are below:

·         Day 1:  The unexpected positives

·         Day 2:  The cost of a chronic illness

·         Day 3:  Blame and judgment

·         Day 4:  Mental health and the emotions of T1D

                                 

Diabetes Blog Week - The Emotions

                        

It’s day 4 and blog week is almost over.  Thanks for reading!  Today’s topic is about mental health and the emotional impact of diabetes:

Today let’s revisit a prompt from 2014 -  Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? 

My emotions around T1 have evolved since I was diagnosed 3 years ago.  Until around this time last year my reactions could be intense.  Highs and lows, especially sudden extreme lows, made me crazy.  I was angry, in tears and saying “I hate this!” when things didn’t go the way I wanted.  Somewhere last spring that changed.  It wasn’t a conscious decision or something I was aware of when it happened.  As months went by I just realized I wasn’t having that kind of reaction anymore.   Why?  I’m not entirely sure. 

What do I think?  Largely that I’ve acclimated to life with Type 1.  The shock has worn off, I’ve made adjustments over days and months to how I manage my disease, and it’s just gotten easier.  Not easy, but easier.  Acceptance took some time, but here I am.  Now when I hear someone describe T1 as “a nightmare” I’m inclined to feel like maybe they’re overstating things.  Not that this isn’t a dangerous, scary full time disease – it is and I certainly never forget that.  But it’s doable and something I’m thriving with. 

That said, I worry even more over time about the reactions and emotions of the people who love me.  My “people” hate it whenever I mention that I recently read about another death in the T1 community.  While this is my reality it’s a shock to people like my parents to be reminded that this could all end in a way that none of us want to see.  A friend who is a breast cancer survivor has pointed out several times that illness is often harder on everyone else than it is on the person who is sick.  I think we’ve reached that point in my T1 experience.  I’m good with it, while the people who love me continue to be shocked and scared by the possibilities.  I only wish I could make it easier for them, and hope that reading my blog and seeing me do well with T1D and with the rest of my life help a little bit.  This helps me, too.  Blogging isn’t only about helping other people understand my disease; telling my story is a kind of therapy for me.

Does all of this mean I’m always 100% thrilled and happy with my T1 life?  Not at all.  I get burned out sometimes with the constant management and the ever-present reminders about T1.   Something as small as giving myself a shot can bring an “ugh” just because there are so very many of them every day and I'd really like to be done with this.  Like most people with T1 I’ve been known to “rage bolus” when my sugar refuses to come down for no reason.  That always lets me extend my frustration when my sugar later comes crashing down as a result.  Sometimes on the weekend when I’m spending several hours in the kitchen cooking the week’s meals, I’m jealous of the friends I know are relaxing and enjoying the time off.  It can approach bitterness once in a while, I won’t deny that.  But I make the choice to do it, too.  So I remind myself that it’s a decision I’m making for me, and that helps.  You always hear that happiness is a choice.  I didn’t choose to get Type 1, and if I got to vote I’d give it back in a millisecond.  But I can also choose to be happy and diabetic at the same time.  Anything else wouldn’t really work for me.

Some great diabetes bloggers from around the world share their thoughts on mental health here.

Are you coming late to my blog party this week?  Find the first 3 posts below.

• Unexpected positives
• The cost of diabetes
• Blame and judgment

Diabetes Blog Week - Judgment

                        

Blog week day 3 has arrived.  Thanks for sticking with me, and if this is your first visit thanks for stopping by!  Today’s topic is about judgment. 

Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgment from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!

I don’t get much negativity from my endocrinologist, because he sees my A1c and my CGM trend and can’t argue with the results.  We disagree profoundly on the subject of statins, but that conversation is fortunately brief each time I see him.  So instead I’m going to talk about some of the things other people have said to me since I was diagnosed.  There are several:

• You don’t look diabetic.
• You can’t/shouldn’t eat that.
• You got diabetes because you ate…
• Are you sure you don’t just have severe Type 2?
• I read an article about diabetes and it said you should/shouldn’t…

Most of these are more silly to me than anything else.  They’re all based on ignorance, not anything remotely malicious.  Yet they can be hurtful.  In a very short time I’ve become an expert in an auto-immune disease I never knew a thing about until 3 years ago.  While it’s relatively new to me too, I’ve become expert in how my body reacts to most of the things I eat and do.  You, whoever you are and however well you know me or how well intentioned you are, do not know as much as I know.

What do I want to hear?  I want you to ask.  Whatever the question is, ask me and I’ll be happy to talk.  One thing I’ll never be offended by is curiosity.  The thing that makes me craziest is some variation of “you aren’t supposed to eat that” or “you can’t have that.”  I have a friend who periodically slips on the food subject, and virtually ducks each time anticipating the very quick reminder that I’m going to eat what I choose to eat.  I know what I can do, I know what I choose to do, and I willfully make exceptions to my own rules on occasion.  But I will happily respond to “I know you don’t normally eat that, how does/will it affect you?”  I’m also good with “I just read an article about diabetes, does this relate to you at all?”  Assumptions don’t go well.  Make it a conversation, and I’ll give you as much or as little detail as you want to hear.  Just talk to me.  

See what the other 80+ bloggers are saying about this topic here.

Did you miss my earlier posts this week?  Check them out below!

• Day 1 was about unexpected positives.
• Day 2 was about the cost of diabetes.  

Diabetes Blog Week - Costs

                       

Welcome to day 2 of Diabetes Blog Week 2017.  With all the discussion currently and over the last several years about health care in the US, it’s no surprise one of this week’s topics is about cost:

Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?

First I’ll say that I’m incredibly fortunate to work for a large US company where I have great health insurance.  Of course, great insurance doesn’t mean free health care.  So when I saw this blog topic, the question I wondered about was how much did medical care for my T1 cost last year?  I looked up the costs for my prescriptions, CGM and appointments for 2016, including only the diabetes specific costs.  The total spend combining what I paid and what my insurance paid was almost $15,000.  Shocked?  I was.  I’m actually a healthy person.  But…I need life support.

Most of that cost doesn’t come out of my bank account because of the coverage I have.  The most expensive individual thing in my world was a surprise to me – it’s the Dexcom CGM – including a receiver, transmitters and the sensors that I insert under my skin to read my glucose.  Is that an absolute necessity to stay alive?  No.  But given that my A1c is at an all time low of 5.1% I’d say that it’s a pretty significant part of the package that keeps me healthy today and for a long time to come.

The most ridiculous cost on the list didn’t surprise me at all.  I don’t pay for test strips under my insurance.  But the cost for those was over $3k last year.  If I bought them retail it would be even higher – CVS charges $1.43 per strip without a prescription.  Many insurance plans severely restrict the number of test strips they cover each month.  But the catch is that one of the keys to managing T1 is knowing your blood glucose so that you can address it quickly.  Without test strips and with no CGM, that is impossible.  If you’ve ever seen a sign on the side of the road advertising “diabetes supplies,” now you know why.  People are desperate to get them at a reasonable cost…and other diabetics are looking for cash to get what they need to stay alive.  Look around and you’ll see them, those signs at intersections and freeway exists.  Sometimes they’re as clear as to say “test strips,” I saw one just last week on my way home from work.  Though I admit I never saw them before I needed them!

I don’t want to make this political, so I’m not going to dive into questions about the ACA, AHCA or whatever else we might eventually wind up with in the US.  But I’ll say this much – insulin isn’t a medication I take to be healthier than I would be without it.  I don’t take it to cure a disease.  I take it over and over again, day after day, because it is keeping me alive.  Alive and HEALTHY.  But because I need that insulin, I have one heck of a pre-existing condition.  And because most pharmaceuticals in this country are insanely expensive, I’m a pricey patient.  I said up front that I’m incredibly fortunate to have the coverage that I do.  But as much as I’m not afraid of Type 1, I’m afraid of what cost I might eventually have to bear to stick around.  It’s a steep cost financially, but an equally or greater cost emotionally to consider.  And that’s coming from one of the lucky ones.


Interested in what other people are saying about this topic?  Check out their blogs here.

If you missed my post from day 1 about the unexpected benefits of diabetes, get caught up here.  

Diabetes Blog Week - Diabetes and The Unexpected

                        

This is the 8^th annual Diabetes Blog Week, and my first.  Until now my topics have always come from my distracted mind or from conversations with friends that spark ideas.  I’m intrigued by the idea of writing on topics that I may not have thought of, or putting a different spin on things I think about every day.  We’ll see how it all works out!  Want to see what other bloggers are saying about today's topic?  Find their links here.

Today’s topic:

Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected? 

I tend to be somewhat anal retentive and a little obsessive compulsive about planning, so being prepared for every situation is something I focus on.  So instead I’m going to talk about the good things that have come about because of my Type 1 diagnosis.  These are all unexpected outcomes for me and great developments.  I’m not done, but I certainly wonder what’s yet to come.

The first and most obvious thing T1 brought into my life was this blog and the desire to tell my story.  When I was first diagnosed I didn’t  want anyone to know and worked pretty hard to hide being diabetic.  Over the last 3 years I’ve gone from not telling people to screaming it publicly on the internet.  That’s a healthy change – I’m still keeping it pretty quiet at work, but I feel a change coming there too.

Why?  Because I’m finding my voice, a voice I didn’t realize I didn’t have.  Part of this is undoubtedly due to my advancing age, I’m sure.  I worry a lot less about what people think, and when it comes to T1 I worry less about it with every passing day.  With that, being honest about my disease and its realities becomes more important.  It makes telling my story important, and is helping bring me more out of the shy shell I’ve lived in since I was a kid.  OK, so it took me over 40 years.  But at least it’s happening!

The last unexpected positive takes me in a different direction, and is as personal as it gets for me.  When I was diagnosed I wasn’t just freaked out, I was scared about how my parents would react.  I actually tried to figure out how I could avoid telling them altogether, which I realize now would have been completely impossible.  Initially, we didn’t talk about diabetes much; I live a state away, we see each other maybe 4 or 5 times a year, and it wasn’t consuming as much time and effort at the start as it does now.  But as time has passed, things have progressed.  I need more insulin as my body has pretty much completely stopped producing any, I’ve added a CGM and started a blog, and all of those contribute to much more discussion.  That’s true with everyone, with both of my parents, my sister and my friends.  But it is most noticeable and significant in how conversations have changed with my dad.  He asks more questions now than he did originally, and we talk a lot more about how I manage T1 and what I do and don’t struggle with.  We talk about my health and his health and have conversations we never had before.  And of all the unexpected positives that could have come out of being diagnosed with a lousy chronic disease none of us ever wanted to know about, that’s one heck of an amazing gift.  Thanks, Dad.  I love you.

A Human Pincushion

Next January I’ll be 20 years into my career in data analysis.  I actually have “data” in my job title.  So of course when I was diagnosed with Type 1 Diabetes I figured I had an advantage.  I don’t know if that’s actually true in practice, but it certainly means I spend a lot of time thinking about numbers.  What I hadn’t really thought about was getting a little more perspective on those numbers.  I know how many units of insulin I take for different foods and how many needles and test strips are in the prescriptions I fill every 3 months…but I never thought about what that all looks like.  With that in mind, I decided to spend the month of March finding out.  I saved every needle and every test strip for 31 days to see what I do so I could share it here for perspective.  I’m the one poking all these holes in myself every day, but seeing the volume of them was shocking.  And the exercise left me with something of a biohazard on my hands!

Every day in March I put all of my needles into a plastic cup in my kitchen.  If the month extended to 32 days I wouldn’t have been able to maintain the delicate balance at the top of this pile.  For context on size, the object behind the cup is a Kitchen Aid mixer with the awesome cover my mom made for me.  It only took a few days for me to be awed by the volume accumulating at the bottom of the cup.  

At the end of the month I counted the needles and set them up in rows to get the full effect.  How many?  That’s 248 needles, an average of 8 per day.  Most days are less and a different month would be somewhat lower.  March had some weekends away from home that included beer, which means I was dosing more often than usual.  Things don’t take long to add up.

I also kept all my test strips throughout the month.  There’s no cute way to display these, and I kept them in a Ziploc bag until it was time to count.  Even with my CGM keeping tabs on my blood sugar, I test a lot.  That’s 292 strips almost filling half a cup, an average of over 9 per day.  I’m actually curious as to whether that number would go down if the beer I mentioned hadn’t happened.  I was testing an average of at least 9 times a day before I got my Dexcom, and I’m not conscious of testing that frequently now.  I’ll probably test it again for a week some time to see how the numbers come out.

Between injecting insulin and checking my blood sugar I poked 540 holes in myself during March.  That’s somewhat surreal to realize, and I’m the one actually poking each of those holes.  I poke those holes every day with no time off for good behavior.  I don’t do it to cure my disease; I do it to stay alive and healthy.  I downplay what goes into T1 pretty regularly, but make no mistake – this is a lot of work.  It’s also a whole lot of puncture wounds.

For some additional context I thought I’d show what I mean when I talk about insulin doses. One example was when I described accidentally injecting 27 units of Novolog (fast acting insulin) instead of Toujeo (basal insulin).  With all the images of the needles and test strips that I go through in a month I thought it might be meaningful to show a unit of insulin.  The pictures below shows a single unit of insulin in the same measuring cup the test strips are in above.  That’s it, one unit down there in the center.  Making a miscalculation in a dose of just one or two of those units can be the difference between normal blood sugar and a shaky, scary low, or even a trip to the hospital.  That’s my margin of error, a drop you can barely see in a photo.  I zoomed in so you’d be able to see it at all.

What’s my point with all of this?  My goal was and is showing the scale of what goes into managing T1.  I’m not complaining; I didn’t know what to expect when I started saving all these scraps.  But in hindsight I can also say that the next time I say “it’s fine,” or “it’s no big deal,” I might also remember I have to stab myself over 500 times a month to stay alive.  So yeah, I’ve got this.  But 500 holes a month is 6,000 holes a year.  That’s kind of a big deal.

It's a Small World

If you read my posts on Facebook you know that last month I was on vacation at Disney World with my mom.  We’ve vacationed together each year since 2002 to celebrate our birthdays, which are 4 days apart.  Over those years airport security has increasingly become an adventure, as Mom has had more pins, screws and replacement parts added.  She lights up a scanner!  This year was our first trip since I added the continuous glucose monitor (CGM) to my Type 1 Diabetes management, and I warned her ahead of time that I’m now the bigger problem for the TSA.  She was shocked to see I was right.  First, I sent 3 insulin pens through the x-ray machine – which got my tray pulled for further inspection on both ends of our trip.  There are 2 different responses when I explain that what they’re holding is insulin.  The first is an understanding nod before handing them back.  The second is total confusion and seeking out other TSA agents to get help.  Fortunately, that second level has always let me through without further question.  The bigger problem is that I can no longer go through the scanner, because Dexcom doesn’t know how the sensors will respond.  This is the part inserted in my arm, where I make sure to have the sensor inserted every time I travel so that it’s easy to reveal to security without getting undressed.  That means that I have to opt into the pat down every time I fly.  I don’t mind it (free massage!), so far everyone has been respectful and to an extent even apologetic.  I’m the one choosing the hassle, so I can’t fault them for doing their jobs.  But for the first time in a long time, now Mom is the one waiting on the back end of security while I get 2, 3, and sometimes even 4 levels of attention.  All she could do was laugh.  We’ve been traveling long enough that we’ve gone from a senior citizen threat to national security to a middle-aged diabetic gumming up the works.  Bear with me if you’re ever stuck in security behind me, I’ve become the person you usually curse at.

There’s an overdue blog post that ultimately needs to happen about vacations, family and food, but this isn’t that post.  What I want to talk about are the people I encountered while we were out of town, and a recent decision I’ve made.  The numbers I see online are that there are either 1.5 or 3.0 million people living with T1 in the United States.  As someone who analyzes data, I find that range ridiculously large and it tells me that we really don’t know other than…it’s not a lot of people as a percentage of the population.  Yet I seem to run into T1s or people affected by T1D everywhere I go, and I had 3 of those experiences on this vacation.  On our trip to Hollywood Studios I wore my “T1D Looks Like Me” shirt and a gentleman approached me out of nowhere to ask if I have T1.  He explained that he was a bike mechanic and supports the JDRF fundraising ride every year in Grand Rapids, just an hour or so from where my family lives in Michigan.  The second T1 run in was one night at dinner.  As I was injecting insulin before desert, a young server walking by exclaimed “I use that kind of insulin too!”  That was a first for me.  And finally, on the day we went to Universal Studios, a security guard going through my purse pulled out the cold pack with one of my insulin pens.  He had no idea what to do with it, but his partner quickly said it was either insulin or an EpiPen.  She knew about the insulin because she also has T1D.  I told her I was diagnosed just a couple of year ago, and as we walked away she said “it gets easier.”  I told her it already has, and we headed off to the park.  It fascinates me the number of T1 people I run into.  If there are so few of us, why do I meet these people so frequently?  We didn’t go to the Magic Kingdom on our trip this time, so I’ll spare you any “It’s a Small World” puns and just leave that ear worm out there for you to enjoy.

That last line from the security guard is something I’ve thought about a lot.  For me it has gotten easier.  T1 is changing me in ways beyond the physical, and it’s all positive.  This is never easy, but most of the time it’s as significant a part of my routine as brushing my teeth.  As I’ve said in a previous post, I had to learn about managing T1 largely on my own and from strangers on the internet.  So when I got an email from the local JDRF chapter looking for people to volunteer as mentors to newly diagnosed people, I realized this may be a chance for me to help someone starting their T1 journey.  I’m generally not a joiner, so this is outside of my normal reaction.  But having T1 is so outside the norm that I feel like I have to go outside my comfort zone for this one.  So I’m heading to the JDRF office after work this Thursday for mentor training.  I’m hoping to be paired with recently diagnosed adults rather than the parents of recently diagnosed kids.  Not that I can’t talk about T1 with parents, but I can’t accurately relate to their experience.  I don’t know what will happen, who I’ll meet or how it will go, but I’m giving it a shot.  If nothing else comes of it, hopefully I can help some people believe that eventually, after you get through the denial and fear and confusion and all the other myriad emotions that come with a T1 diagnosis, it really does get easier.

I tortured my mom while we were at Disney and demanded she cooperate with a few photos.  Fortunately, she humored me a couple of times.  This is soon after we rode Expedition Everest at Animal Kingdom.  Thanks, Mom.

I Overdosed on Insulin

After 2.5 years of T1D, a lot of managing my disease happens almost on autopilot.  Generally giving myself insulin is just something I do before I eat, and because I know the right dose for most of my meals it doesn’t take more than a second of thought to get it done.  Sometime between 8 and 9 every night I also take my “nightly,” the basal insulin that maintains my blood sugar throughout the day beyond the insulin I need to cover food.  Autopilot, day after day.  Such automatic movements that I absentmindedly screwed the whole thing up.

At about 8:30 last Friday night at a hockey game, I gave myself my usual nightly shot.  But right as I injected the full 27 units into my stomach I realized I’d used the wrong pen.  Without thinking, I’d given myself enough fast acting insulin to cover approximately 135 grams of carbohydrate.  To put that into context, that’s the equivalent of 2 large orders of french fries at McDonald’s or 4 slices of a large pizza from Domino’s.  Or even more fun, an entire pint of Ben & Jerry’s Chocolate Fudge Brownie ice cream.  But I hadn’t eaten any of those things, so suddenly my friend and I had a bit of a crisis to address.  This was a major T1 “oh shit” moment.

I’ve read stories online about people using the wrong insulin and I’ve admittedly been pretty judgy about them.  How could you possibly do something so stupid when the 2 pens are so unmistakably different in appearance?  That’s what I get for being quick to judge.  I’m far from perfect, so what makes me immune to making a colossal mistake?  Nothing at all, and it bit me in the behind.  I ran on autopilot, overdosed in a big ugly way, and…can’t honestly say it will never happen again in half a lifetime of T1D.  I felt stupid the first time, I’m sure I’ll be mortified a second.

What happened after I overdosed?  I immediately ate a handful of really unpleasant “tropical fruit flavors” glucose tablets, followed by multiple handfuls of peanut butter M&Ms and then most of a giant order of french fries from Michael Symon’s B Spot restaurant.  I was going to eat my burger with the bun, but even in a crisis I couldn’t do it – the bread to meat ratio was too high and ruining a really good burger!  In the end we got through the whole thing without needing a trip to the ER.  My sugar bottomed out at 59 around 9:45 PM and finally started climbing around 2 AM until it spiked to 249 a little after 3 AM.  It was not a good night, but there’s no truly great outcome of that kind of mistake.  The end result was I survived and that’s what matters most.

What did I learn from my OD?  That handling T1 has become so routine I often don’t give it any thought.  There’s good and bad in that.  Mostly I’m calling it a good realization that a miserable and stressful disease is typically just part of the routine for me.  At the same time I need to be more mindful about the decisions I make.  I was reminded that I’m generally pretty calm in the face of a crisis…and that watching someone else’s health emergency is terrifying, as evidenced by my friend admitting she was panicking.  And I learned yet again that T1 won’t stop me because there’s nothing here I can’t handle.

Happy New Year, everyone.  Here’s to a healthy, happy 2017 filled with good decisions and with ridiculous blunders kept to a minimum.  I’ve been quiet on the blog for the last 2 months, I’ll try to get back into the swing over the next few weeks.  Thanks for being part of a great 2016.

27 units of Novolog was a bad idea!