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!

Positively Diabetic

Earlier this fall a guest speaker came in to my company, accompanied by his wife and service dog.  Along with topics related to accommodating and addressing disability in the workplace, he discussed “disability positivity.”  This man was born with cerebral palsy spastic quadriplegia – physically there isn’t much he can do other than some small control of one hand.  But the talk he and his wife gave was about being positive and was often laugh out loud funny.  Sure, he admitted to being frustrated by his disability at times.  Most recently before that presentation he was denied entrance to the flight from his home in Toronto to my company in Cleveland because of the size of his wheelchair (see the story here).  But he also pointed out the positives, like being more creative in life at problem solving because of things he can’t physically do.  The whole presentation got me thinking…what are the positives in my Type 1 diagnosis?  Clearly a list is in order.  All of these are true, though some are much funnier than others! 

In no particular order, the positives of living with T1:

• I’m much more motivated to go to the gym, which may help me keep my toes in the long run.  I can’t afford for my feet to be any smaller, I wouldn’t be able to reach the gas pedal!
• I have an excuse to eat candy in bed.  Not something I ever dreamed about, but now I have an assortment next to me every night in case of lows. 
• I get to see the many amazing colors bruises can turn.  Technicolor!  Every injection is a mystery…will I bruise this time or not?
• When I needed to take blood thinners after ankle surgery I wasn’t stressed out about another daily needle to the stomach.
• I’ve learned about the incredible people who fight this disease, including some inconceivably tough kids like Luke and River.
• I’m science fiction in motion, with a gadget attached to my arm that tells not only me what my sugar is doing, it tells my friends no matter where they are.  Beam me up!
• I get to buy increasingly larger purses to accommodate all of my D-stuff.  Why wouldn’t I want to take luggage with me everywhere?  I’m trying to learn to appreciate a giant bag.
• I carry portable meat in my giant purse for when I need a snack.  Portable meat.
• I’m a part of an active online community of people with T1D where I continue to learn about fighting this disease, help others learn how to fight and where I have a 24x7 sounding board to vent to people who understand when things just don’t go the way I want.
• I’ve been exposed to the wonderful world of skin adhesives.  That space gadget on my arm won’t stay there long without extra help.
• I’ve developed a strong affinity for sugar free strawberry jell-o and chocolate pudding.  Don’t judge.
• I’m more patient with myself.  There are variables in play that I can’t see or feel, and those affect my results.  I’d love to see what my sugar was right before we jumped out of that plane skydiving, but I had to leave my phone on the ground and out of range.
• I’m better at meal planning.  It’s easier to do all my cooking in advance than worry about what they’re serving for lunch in the cafeteria or what I’m going to eat if I don’t get home until 8 PM.
• I’ve discovered the largely invisible “diabetes” section at pharmacies.  Be honest, you didn’t know I had a section all my own where they sell things like socks and portable glucose.  No, I don’t wear diabetic socks.  But you’ll notice them the next time you’re at CVS!
• I was diagnosed as an adult.  Why is that a positive?  Because though this may cause my parents some stress from time to time they’ll never have to live with the ups and downs and go through sleepless nights managing my T1D for me.  I caused them more than enough stress growing up!
• I’ve developed a sixth sense for Sharps containers where I can dump the used needles I’m carrying around.
• I’ve discovered the joy of glucose tablets.  Raspberry is delightful, orange is tolerable, chocolate marshmallow should have been destroyed 5 minutes after it was created.  I’m starting to search for new flavors online to expand my sugar palate, but I recently found “citrus punch” and “tropical fruit” at CVS.  We’ll see which end of the ratings they land on!
• I learned that my immune system is amazing.  People say that diabetics get sick more often and are slower to heal injuries, but my immune system is so powerful it killed off a perfectly good pancreas.  I’m unstoppable.
• Wearing a CGM means I can’t go through the scanner or x-ray machines at the airport.  Free massages from TSA every time I fly!
• Because there are many ways to treat low blood sugar, beer has probably saved my life more than once.
• I get to do my part to educate people about T1D.  Until I was diagnosed I knew it as the diabetes that kids get, and had no idea how serious it was.  Now I’m able to share my experience to raise awareness and change perceptions.
• I have a blog!

Why do I carry a giant purse now?  Here's what I carry daily to take care of my T1D.  A glucose meter, needles, 2 types of insulin and a chilled pouch to keep them cold, needles, test strips, pepperoni sticks to snack on, M&Ms and glucose tablets to correct a low blood sugar plus a protein bar for before the gym.  I'm ready for anything!

Awareness Month!

November is Diabetes Awareness month.  When I was first diagnosed with Type 1 I didn’t tell many people; I’m pretty sure I waited a year before mentioning it on Facebook.  Last November I didn’t mention awareness month, change my FB profile picture or do anything else to draw attention to T1D.  A year later I’ve created a blog, proudly wear a t-shirt that says “Type 1 Strong,” and started looking on the JDRF web site in October to see if they were still doing the “T1D Looks Like Me” profile pictures.  What a difference a year makes!

What changed?  I didn't want to stay quiet anymore.  I have a highly misunderstood chronic disease that affects millions of kids and adults and very few people have any clue what Type 1 means.  I want to raise awareness, I want to support research efforts towards new treatments and a much needed cure, and I want the people I care about to understand my fight.  I wear a bracelet every day from a group called Beyond Type 1 that says “educate, advocate, cure.”  I wear it to remind myself how important it is to educate people about T1.  While I feel unlikely to do something like meeting with my elected representatives to advocate for increased T1 research funding, I feel like what I do here serves a similar purpose – I’m advocating for myself and everyone else with T1 by teaching people about our disease.  Though I can’t directly do anything about finding a cure, I’m able to donate and raise money for an organization like JDRF that can.

So here I am.  I can’t change the world, but I can try to change my tiny little piece of it.  I started this blog hoping to make sense of this for my parents and close friends, and now I’m reaching not just those people but friends from high school and college that I haven’t seen in over 20 years.  That’s amazing to me.  I realized this weekend while I was visiting my family in Michigan that I still have plenty to share.  As much as I’ve explained since I was diagnosed, and as much as I’ve described online, my dad learned a lot about T1 in the time we spent together.  He didn’t like what he saw, but I’m glad he got the extra insight.  I’m even happier that he got to see me fight through it.  You’re right Dad, my T1 is a schmuck!  I couldn’t have said it better.

It’s hard to do justice to T1 in writing sometimes, but I’ll keep trying.  On day 1 of this Diabetes Awareness month, I’m grateful I have the chance to share my stories with all of you.  Thank you for your support and your interest in hearing what I have to say.  Educate, Advocate, CURE.