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. 

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.

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.

What Is That Thing?

On my recent vacation in Las Vegas I wore tank tops most of the week, which meant my continuous glucose monitor (CGM) was in full view on the back of my right arm.  2 people asked what it was, a whole lot of others tried not to get caught staring.  I notice the same thing at the Y when I’m on a treadmill; people are curious but uncomfortable asking, and throw side glances while they walk or run.  Not everyone will feel the same as I do, but my advice is this – if you see someone wearing a medical doohickey they’ll probably welcome your questions.  If I wasn’t OK with you seeing it I’d put it somewhere else or wear longer sleeves.  And while I’ll happily give you a quick lesson on the fun toy stuck to me, I promise not to bore you with a 10 minute preachy spiel.

For those who didn't see it when this picture from Vegas was on Facebook, here's the highly noticeable gizmo on my arm (and my terrible posture).  We'd stopped for a few minutes to watch the 4th quarter of the Michigan/Wisconsin game and my friend took the picture while humoring me with a game she didn't care about.  If you look close enough you can see the fireworks sticker I added to the transmitter from Pump Peelz.  

Anyway, it’s been almost 4 months since I started wearing my CGM, so I thought I'd give an update on how things are going.  As a reminder, the CGM is a device with a tiny wire inserted under my skin connected to a transmitter that provides glucose readings every 5 minutes.  I get those readings on my iPhone and 3 friends also get those readings on their phones in real time.

My overall thought?  I love it.  One of my favorite parts is being able to watch my sugar while I’m at the gym.  On one hand it’s just cool to watch the number drop as I walk.  Typically after about 20 minutes things start trending down, so it doesn’t take long.  More importantly, it tells me when my sugar is starting to get too low.  That lets me throw back some glucose without missing a beat and without worrying about the potential for some kind of catastrophic flight off the end of a treadmill if I get way too low.  Though yes, I know some of you would pay good money for that video.  Not happening!

The biggest minus of my CGM is that sometimes it’s really wrong.  An alarm on my phone goes off for any glucose reading under 55.  Four times recently a transmitter has decided I was around 50 in the middle of the night, setting off that alarm on my phone and my friends’.  That alarm is a big part of why I wanted a CGM in the first place, but more than once I’ve gotten out of bed to check manually and found my sugar was a perfectly healthy 100.  Thanks for that, Dex.  Nobody really wanted to sleep through the night anyway!  Why are the readings wrong?  Sometimes because it's time for a new site and I need to move the transmitter to somewhere else on my body.  Technically you’re supposed to move it every 7 days, though like most people I stretch that as long as I can if it’s still working and is reasonably well stuck to my skin.  Other times readings get screwed up or even temporarily cut off if I’m laying on the body part the transmitter’s in.  Since I don’t lie just in one spot all night it’s kind of hard to avoid that in my sleep.  And like everything else with T1, sometimes it’s wrong because the thing just glitches.  That’s all I can figure out, anyway.  If I drop from 90 to 50 in 5 minutes, I label that a glitch.  I don’t think that kind of dramatic change has been right yet.

Accurate or not, those low alarms in the middle of the night don’t just go off at my house.  That’s both a plus and a minus.  There are 3 people who have been willing to follow my CGM data and that’s a big deal to me.  My biggest goal with getting this was safety, and I’ve asked these friends to be my back up when I may not be able to take care of myself.  But that also means waking them up!  There have been a couple of times already where I’ve needed an adjustment to my insulin dose or my body seems to be a bit out of whack and I wind up going low multiple nights in a row.  That means we all wake up, I text them that I’m OK, and we all try to go back to sleep.  Not a big deal in the grand scheme of things, but I feel guilty when it happens.  More than once I’ve eaten some glucose or M&Ms because it looked like I was dropping and I wanted to make sure I didn’t wake anyone up.  I realized just recently though that I’m the only one of the four of us who hasn’t slept through any of the low alerts yet.  Yet.  Good thing we can all back each other up. J

Another annoyance with the Dexcom is keeping it on me.  While there’s a wire under my skin, the whole operation is kept together by adhesive that glues the CGM to the surface.  I’ve struggled with this part and haven’t found the ideal solution.  My record is now 26 days, for that site on my right arm that went skydiving in Vegas.  There’s no way to predict how well it go, and several sites lately have barely made it through the 7 days the company promises.  I’m working my way through suggestions I’ve found online (like the colorful and fun Grif Grips!) , and my next step is going to be trying to put Skin-Tac adhesive on my arm before I stick the sensor down.  After that I’m aiming for kinesio tape because I’ve heard some people have luck with using that around the edges.

As I write all this down I realize that I’ve listed a bunch of negatives that might contradict me declaring my love for this gadget.  Besides stalking my own sugar on the treadmill, one of the big advantages is keeping tighter control of my health.  I saw my endo a couple of weeks ago and was hoping for an A1c of 5.7.  I wound up hitting 5.6 and tied my all time low.  In non-T1 adults that result is considered non-diabetic.  So on average, I'm doing a decent job playing the role of my pancreas.  I can react faster to changes in my sugar now and that helps me prevent some highs and resolve others sooner than I’d know about them otherwise.  A lower A1c means I’m pulling off tighter management of my glucose and hopefully reducing my risk of complications from T1D.  Doing that with a CGM that warns me when I’m low means doing it as safely as I can, so I’m willing to accept a few false alarms.  My doctor was so pleased with my trend over the last 3 months that he joked about framing the graph I printed for him, and he cut me down to only 2 appointments a year instead of the 4 visits most T1s have.  That's a pretty good place to be!

The End of the World?

“It’s the End of the World as We Know It” is from one of my all time favorite bands, R.E.M.  When I was diagnosed with Type 1 I had an R.E.M. CD in my car with that song and I was playing it frequently.  Every time the song played I wound up in tears.  I can’t tell you how long it continued, I don’t remember.  At least for a few weeks and probably longer, and I never discussed it with anyone before now.  I felt like it was the end of the world because I was terrified about what my new disease meant and what was coming.  There are plenty of things to be worried about!  It takes some time to come to terms with them all.  Sometimes I’m still not sure I have, but I keep trying.

On the day my endocrinologist gave me that first shot of insulin, I told the friend who was with me that it meant I would die early.  I held off on crying until after we made it to the parking lot (victory!), but then I lost it.  I didn’t know what diabetes meant but I was pretty sure it involved a shorter lifespan.  The reality is that it might and it might not.  The most recent information I’ve seen is that Type 1 shortens the average life expectancy by 12 years.  Ouch!  Since I don’t know what my life expectancy was before I was diagnosed, that isn’t quantifiable.  I don’t know what I would have gotten, so I don’t know what (x – 12) is.  And since it’s an average, it means plenty of people lose less than 12 years, others lose more and some even gain time.  When we were in grad school, my roommate and I made bad statistics jokes.  One was “skew the distribution in your neighborhood,” a play on Mr. Rogers.  I don’t want to be average; I want to skew that distribution to the high side and I’m doing what I can to get there.  I’m also hopeful that being diagnosed in my 40s means my odds are improved since that means 30-40 years less damage from high and low blood sugars in my body.  We’ll see how things turn out, but I’m planning to stick around for a long time.

At that same early endo visit, he told me I needed to start taking a statin to lower my cholesterol.  I declined immediately and we debated the subject for a few minutes.  I’ve done a lot of reading about cholesterol and am comfortable with my test results and lack of family history.  My doc agreed to let the issue go.  But in the next sentence he tried to scare me into changing my mind when he said “we’ll revisit it after you have a stroke or heart attack.”  We actually revisit the subject every time I see him when he reminds me again that I should be eager to start my statin regimen.  It’s not happening, but he’s going to keep trying to scare me into obedience.

The statin chat is my favorite example of managing diabetes with fear.  But then there are the other fun things to worry about over time.  When I told my eye doctor about my diagnosis he happily shared that we have some of the top retina specialists in the U.S. available right here in Cleveland.  Awesome!  But…I’d really rather not need to see any of them.  Each time I see the endo he asks if I’m checking my feet daily for injury.  Why my feet?  Because any unnoticed injury could be the one that ultimately leads to amputation of a toe or a whole foot.  Neuropathy from high sugar could mean I wouldn’t notice that I stepped on a rusty nail.  Circulation problems could lead to poor healing or higher risk of infection, and then they could need to remove that part of me.  Not something I’m interested in, thank you.  And one more that I forget about – when I was diagnosed with high blood pressure around the same time as T1, I asked why I was prescribed the specific medication I was given.  The reason for that drug?  It will help protect my kidneys from the damage diabetes can cause.  Oy vey.

My point here isn’t to scare anyone or to say that I expect to leave this world prematurely, blind and 7-toed.  My point is to explain that so much of Type 1 is about fear and the language of fear.  Nobody’s ever going to say I’m the most optimistic person they’ve ever met.  No chance of that! I’m often the sarcastic cynical in any crowd and all the possibilities of T1 scare me.  Of course I worry about the long term complications that could hit me down the road.  But I’m not good with living filled with fear and anxiety.  I prefer to think that I’m fighting and I’m winning instead of that I’m biding my time until I have the heart attack my doctor believes I’ll assuredly drop dead from without his help.  This is a chronic disease that can kill me and everyone dies from something wearing a pile of scars from experiences good and bad.  There’s no guarantee that T1 is going to get me and I’ll keep doing everything I can in the meantime so that something else gets me when that day comes.  I’m planning to go out with my eyes and toes intact, thank you very much.  Living in fear is way too much work.  I’m living my life.

On the side of positive reinforcement there are 2 organizations I’m aware of that celebrate lives lived successfully with T1 and both send medals to commemorate significant diagnosis anniversaries.  Lilly Diabetes awards medals at the 10, 25, 50 and 75 year marks.  The Joslin Diabetes Center also awards medals after 50 and 75 years of living with T1, and a certificate after 25.  Why are they giving out awards for reaching T1 milestones?  Because it isn’t easy to do and because it was impossible to reach those goals not so long ago.  I’m not holding out any hope for 75 years, but I’m aiming for those 50 year medals and can guarantee I’ll submit my application each time I hit one of those marks.

The pictures from my first skydiving experience tell the whole story.  I couldn't stop smiling before, during and after the trip of a lifetime.  Living!

Every Day is the Same...but Different

Spending an evening with an old friend a couple of weeks ago, I realized how little people know about what goes into living with Type 1 diabetes (T1).  We ordered pizza, and when I thought I had about 15 minutes left until dinner I injected insulin #1 to cover the bread I was about to eat.  My body, the insulin and the pizza guy weren’t all on the same timeline, so my sugar dropped before the food arrived.  With falling sugar, I worked to balance the insulin with some M&Ms and glucose tablets to get my number up before dinner.  When I injected insulin #2 not long after that, my friend’s reaction was basically “wait, now what?”  That’s on me, not on her or anyone else — I’ve never told her about the details of what goes into T1.  How could anyone know about the constant battle if they haven’t watched in person or heard about it directly?  T1 can be a roller coaster or a calm drive through the countryside depending on the day.  This is my attempt to fill in some of those gaps.  It’s on the long side, so bear with me!

The first and last thing I do every day is manually check my sugar (a.k.a. my “digit”) on a glucose meter.  Before I got my Dexcom CGM last month, I typically poked my fingers somewhere between 8 and 12 times a day.  Now that I have the CGM I still have to use finger sticks to calibrate it at least twice a day.  Right now I’m doing that to start and end the day and somewhere else in the afternoon or evening.  If I go to the gym, I check right before I work out.  Because my sugar can drop pretty significantly during cardio activity, that’s the time of day I’m most worried about knowing exactly what’s happening and want to make sure my CGM is accurately reading my level.  The rest of the day, I’m able to check in with my CGM to see where I am, before and after meals, before and during meetings, and any other time I want to know how I’m doing.  I need to know where I am to know what I need to do to keep my sugar as close as possible to where I want it to be.

Where do I want my sugar to be?  In a perfect world it wouldn’t be any different than a person without diabetes.  For those who like numbers, that’s below 100 when I wake up, under 110 before I eat, and no higher than 140 after meals.  In practice that’s not always easy, especially that digit after meals.  That's because anything I eat raises my sugar.  That doesn’t just apply to sugary foods or high carb things that digest into sugar, like french fries.  It’s just about everything, including proteins like beef and chicken even in the absence of any carby stuff.  So for nearly every meal and snack, I need to take insulin before and/or after eating to keep my sugar from blowing up to 200 or beyond.  That’s insulin #1 in this story, the fast acting shots I take to adjust for food.  In a non-diabetic person, the pancreas works before, during and after meals to keep glucose in a healthy range.  In my world, I play that role with insulin pens and needles.  In diabetic terminology, those are called insulin boluses.  In my vernacular I’m either dosing or shooting up.  Eat food, dose.  Go high, dose again.  Go low and need to get back up to a healthy number?  Depending on the time and place, my solutions range from glucose tabs that are chewable sugar bombs in (not so) fabulous fruit flavors, to choosing a beer instead of a glass of dry (low sugar) wine during a night out.  The choices are many!  I will say there’s nothing quite like chewing raspberry flavored sugar at 4 AM…except the resulting taste left in your mouth when the alarm goes off 2 hours later.  However, I’ve yet to work up the motivation to get up and brush my teeth after a late night low!

Insulin #2 is my basal medication, or what I call my “nightly.”  This is a long acting insulin that is designed to keep my sugar fairly consistent in between meals, including overnight.  Its long duration of action means I only need one dose a day, compared to the original long acting insulin I took that was injected every 12 hours.  There are a lot of things that impact blood glucose other than food, including the release of hormones that happen naturally 24/7.  #2 is to keep me at a healthy base sugar level, and my dosage is independent of what I’ve eaten.  One guaranteed impact on that dose in my life is exercise.  If I walk on a treadmill at least every other day or so, my dose is lower than if I don’t exercise.  Cardio increases my sensitivity to insulin, so I take a little bit less when I’m working out consistently. 

Every day with T1 is a balance.  It’s a balance between food, insulin, exercise and all the other unseen factors in life and inside my body that can impact my sugar.  No two days are the same, even if all of my inputs to the process like food and exercise are identical.  That balancing act that my friend saw not so long ago happens every day, but I don’t tend to discuss it with many people.  It’s my routine now, even though there’s no such thing as a routine day.  Wake up, check sugar and dose if needed.  Eat, work, keep monitoring sugar via finger poke or CGM.  Dose for food, dose for unexplained highs, throw back some M&Ms or a bite of brownie to correct random lows.  Go to the gym to help manage sugar levels, but be careful to make sure my sugar is high enough going in that I don’t have a dangerous low that could cause me to pass out and fly off the back end of a treadmill.  Eat, socialize, sleep and keep checking sugar to adjust for anything known or unknown that’s causing the CGM trend line to deviate from a happy path.  Wake up tomorrow and start the cycle over again, wondering what tricks my body may have in store for the day.  And if you think I was joking when I said “bite of brownie,” I really mean that and I pulled it off recently at work.  It doesn’t take much, so willpower is important!  I eat M&Ms in increments of 1 at a time now.  Who knew that was possible?!

I don’t talk about any of this in detail very often.  It’s my grind, not yours.  At the same time, the longer I fight T1 the more I see the need to improve awareness.  I want my family, friends and the people around me to know about this disease and my experience as much as they can without living in my shoes.  I don’t want sympathy; I’m fighting T1 and enjoying my life at the same time.  But I do want to open a window, even to the extent that it’s possible with a blog post, into what T1 looks like.  There is rarely an hour that goes by without me thinking about my sugar, or the impact and timing of my last and next meal, or whether I need another insulin shot, or whether I could wind up with low blood sugar and have my brain let me down mid-sentence in a meeting.  This is Type 1, and until researchers come up with a cure, this is my life.  It’s all day, every day, but as I’ve often told another friend about fighting T1, “I got this!” 

On a not so side note, my sugar the last several days has been amazing, running most of the time between 80 and 120.  I posted a 24 hour graph of my CGM readings on the Beyond Type 1 app the other day and another Type 1 responded with “holy cow, what are you doing?”  Pretty cool validation of a really nice week.  Here's my last 24 hours as of tonight, I'm heading into the weekend in a great place.