Thankful

I think this is the first Thanksgiving Day that I haven’t seen my parents.  Don’t feel bad for me, I just spent 5 days in Michigan with my parents and my sister and her family.  We had some stuff going on that required schedule adjustments, so we did our “Apfelgiving” together last Saturday.  While I was driving from Kalamazoo back to Cleveland yesterday I had some time to think and that led to this post.  I’m thankful for so many things.

First and foremost I’m thankful that as I approach my 47^th birthday, the parents my sister and I used to call the “old parents” are still with us.  While we can still all frustrate each other, we’re lucky to have each other and that we can always come together on important days.  You think you’re funny when you're a kid and say you have the “old” parents because they’re in their forties and your friends’ parents are in their thirties…it’s a gift when you realize your "old" folks have outlived a lot of those peers.

I’m thankful that my sister and I can spend our adult lives hundreds of miles apart, see each other a few times a year and still have a pretty cool bond.  We were a team as kids and when it needs to happen we’re still that team today.  I’m thankful that even as he becomes a sometimes stereotypical teenager, my 13 year old nephew still wants me to play video games with him.  And I’m thankful that while he used to lay his head on my shoulder, now when I lay my head on his shoulder the man-child lays his head on top of mine.

Since my blog is about Type 1 diabetes, I can’t leave that off the list.  I’m not grateful I have Type 1, I’d obviously rather take a pass on that.  But I’m thankful that I got it instead of it hitting anyone I know.  I’m thankful I live in a time and place where insulin exists and that I have the access, insurance coverage and finances that make it easy to get everything I need to stay alive.  I’m grateful that it eventually stopped making me insane and became a (mostly) seamless part of everyday life.

I’m thankful that I’m healthy, even though I’m “sick.”  I’m thankful for the 3 crazy friends who are willing to follow my Dexcom and check on me when my sugar is low, including the text and phone call that jolted me just after 3:30 this morning.  It’s an incredible gift that you’re all willing to lose sleep to make sure I wake up.  I’m thankful to have a friend who was with me the day I was diagnosed, who carries glucose in case I run out, who learned how to stab me and check my blood sugar when I can’t, and who wants to learn how to inject insulin in case I’m in the hospital one day and can’t do it myself.  But to be honest…she’ll never read this far because my blog posts have too many words for her liking. J 

Because of our schedule adjustment this week, I’m watching the Lions Thanksgiving game for the first time in a long time instead of listening in the car on the way to see my family.  I’m not sure if I’ll be too thankful about that later!  I’m 100% looking forward to seeing the Michigan vs. Ohio State game for the first time since they moved the game back a week, since I’m usually enjoying family time instead.  Go Blue!  And since it’s the little things that really matter most in life, I’m thankful that my dad hooked me up with my favorite breakfast on earth for the second time since T1D landed in our world.  His French Toast, made with my mom’s homemade Challah and topped with her homemade raspberry jam...it's breakfast perfection.  I had the leftovers here at home for Thanksgiving.  Smucker's sugar free raspberry is nowhere near the real thing, but it was still a great start to the day.

Enjoy the holiday and your families and friends.  I don’t say it often enough - thank you for reading.  I’m so grateful for all of you following along.

Why I Lose Sleep

It's 2:30 in the morning and I'm watching my sugar drop on the Dexcom app.  From 54 to 49 to 46, I'm lying in bed with my phone open, sweating.  I've eaten three glucose tabs and two Tums and I just want to go to sleep.  But I can't until my sugar goes up.  This is type one diabetes.  I may have food poisoning, I'm not sure.  So far I've kept my burger down.  If I'm sick this could turn into a really long night.  Another glucose tab, waiting for my sugar to go up.  The sweating is getting worse and I'm shaking, waiting for the next number to come up.  I still just want to go to sleep, but with a glucose of 47 it's just not time yet, so instead I'm laying here dictating a note to my phone to document type one.  This is no joke, it's no game and it's no fun.  I'm up to 51 my heart is pounding and I don't know if I can go to sleep yet.  But with my sugar going in the right direction I'm going to try.  Thanks, T1.
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The note above is one that I dictated into my phone last year and then forgot about.  Other than edits for punctuation this is how it came out that night lying in bed.  Fortunately something this dramatic doesn't happen very often, but there are always going to be nights like this that make no sense.  This is reality for people with Type 1.

The image below is my JDRF footprint through this evening.  It's based on an average of 5 finger pricks a day - I'm typically close to double that.  The injections are an average of 7 a day, which is probably a little low but not too far off.  And the hours of sleep lost?  I have no idea.  They usually aren't quite as dramatic as the night above, but it's a good example.  In comparison, I was up at 4 AM today doing an injection because I was higher than I like to be.  It goes both ways.  These numbers represent just 4.5 years.  I never knew anything about this before I was diagnosed, but I'm going to keep telling my story and watching these numbers climb until somebody figures out a solution.

Heartbreak

Typically the stuff I write in the blog is fairly upbeat.  So much so that sometimes I wonder “who is this person and when did she turn into little miss sunshine?”  Not that I’m a generally sad person, but come on…anyone who knows me also knows that I don’t wander around my house singing “Always Look On the Bright Side of Life” (come on, you know the song and you’re singing it right now).   I don’t want to focus on the negative of Type 1 here…I don’t focus on the negatives of Type 1 in my daily life.  But the reality can be beyond negative.

I posted 2 stories on the blog Facebook page this week about kids dying from T1.  One of them was a little girl who went undiagnosed earlier this year and died because her blood sugar was so high her body shut down.  It’s a condition known as DKA (diabetic ketoacidosis) and it’s a state many T1s are in when they’re rushed to the hospital and diagnosed.  In many cases it can be treated if caught quickly enough with fluids and a whole lot of IV insulin.  It can also happen after diagnosis, and lands plenty of T1s in the hospital if they’re rationing insulin due to the costs, or struggling with high BG due to something like the flu, or because T1 is being profoundly difficult.  Diagnosed or not, it can be fatal.  For this little girl named Arya, her crisis couldn’t be survived because too much damage had been done for her to survive.  The second story was about a little girl named Sophia who’d had T1D for years, but had a sudden low blood sugar in her sleep that caused a traumatic brain injury from which she was unable to recover.  Technology worked and her parents got the CGM alarm that she was low…but the damage had already been done.  This could happen to any of us, and I’ve seen more stories about this happening to both kids and adults than I ever want or need to see.  It could be me one day.

These stories travel in what seems like an instant across the DOC (Diabetes Online Community).  For parents of Type 1 kids, it’s a constant fear that one of these stories will become theirs.  For those of us living with Type 1, reactions vary.  I see T1 peers who keep the risks top of mind, including those who keep their sugars higher than they would otherwise to reduce the risk of lows overnight.  Some are afraid to go to sleep.  Others of us don’t focus on what could happen.  I can’t walk around thinking that today or tonight could be the day that T1 gets me.  I don’t live in a happy fantasy world where nothing bad can happen – I call myself the “neurotic friend” for good reasons.  I also can’t go to sleep thinking “I may not wake up tomorrow.”  I know the reality.  I know that could happen, that the odds are against it, and that I’m likely going to work in the morning.  But I know that not everyone wakes up.

Diabetes is a punch line.  If John has 20 donuts…blah, blah, blah.  This disease is not funny.  People are dying because pediatricians, general practitioners and ER doctors aren’t taking 5 seconds to wonder about a blood glucose level.  People are dying because patients and parents don't know they should ask for a glucose test - I don't think that's our job, but if people like me scream at the top of our lungs maybe at least we give someone else a fighting chance.  People are dying because they can't afford the insulin and all the things that come with it that they need to stay alive.  People are dying because sometimes things go horribly, terrifyingly wrong and a blood sugar level can drop off a cliff nobody knew was right in front of them.  Kids and adults are having seizures and going into comas and sometimes dying and that was never anyone’s plan, just like Type 1 wasn’t in any of our plans to begin with.  I don’t like to bring doom and gloom into the blog because that’s not me, and because…my parents read my posts religiously, for which I’m grateful.  But I’m not here to scare the crap out of them or anyone else, because I have every intention of outliving my incredible parents and a whole heck of a lot of my peers.  I just want you to know, and I need you to understand that this is serious, it can be scary, and it can be deadly.  Some weeks it’s impossible to ignore that.

I don’t know these little girls and I don’t know their families.  I don’t know the other people that have died from diagnosed or undiagnosed Type 1 recently either, including the 2 young boys I've also read about that passed away this week.  But I know their disease and my heart is a little bit more broken every time I see their stories.  I see them way too frequently.  Jokes are funny.  This isn’t.

Correlation is Not Causation

Let me start with the good news – a recent CT of my heart shows that I have no hardening of the arteries.  None, zero, nothing to see here.  I’m not surprised by the news, but of course I’m not unhappy to have it…now.

I say now because the test got into my head.  My GP, the one who doesn’t seem to know much about diabetes, decided not to do an EKG at my physical.  Instead he ordered a calcium score test, which I’d never heard of until he informed me it’s an x-ray and much better at detecting a blockage than an EKG.  I wasn’t expecting a blockage…but of course he explained that I’m much more likely to have one because I’m diabetic.  I didn’t think much of it at that moment other than the continuing thought that he’s never heard of Type 1.  I took the order and headed out of the office.

Before calling to schedule my test I looked it up online to find out what I was in for.  I found out it’s a CT scan and is recommended in specific cases where people are at high risk of a coronary event.  I chuckled to myself before making the call for an appointment.  Here is who University Hospitals in Cleveland recommends has a calcium score test:

We recommend this test for men age 45 or older and women age 55 or older, with no history of coronary artery disease, and with one or more risk factors for heart disease, including:

·         High blood cholesterol

·         Low HDL cholesterol (“good cholesterol”)

·         High blood pressure

·         Cigarette smoking

·         Type 2 diabetes

Where should I start?  For as much as I joke about being old, I’m still a few years away from even celebrating my 50^th birthday.  I do have high cholesterol, but my HDL is through the roof and actually exceeds my LDL.  My BP is controlled with medication, I’m an ex-smoker, and…there’s the diabetes that I don’t have.  Combine all of those with an active lifestyle and zero family history of heart disease and it makes little sense to me for a doctor to suspect I have a problem.

The good news is the test went well.  But though I made the CT appointment feeling confident I had nothing to worry about, tests are scary and sometimes my brain likes to mess with me.  By the time I got to the day of the test I’d worked myself into a frenzy worrying about what I’d find out.  We all hear the constantly changing recommendations about who should get tests like mammograms and colonoscopies.  One of the reasons given for having tests later or less frequently is to avoid the fear created by false positives.  I’ve had that fear after a mammogram, but based on genetics I know have a fairly decent risk of breast cancer and I'm all for whatever they need to check to know if there's anything there.  I have little risk of a heart attack, but my doctor put me through a test because he expected to find something.  I was so stressed that day my heart was racing and I felt like I could have a heart attack out of fear alone.

The reality is that having diabetes doesn’t mean terrible things are going to happen to me.  There are all sorts of potential complications from T1 and T2, including heart disease.  Though I know that no matter what I do to avoid them I could still wind up having problems in the future, I have to keep doing what I can.  The presence of diabetes doesn’t cause heart disease.   As I talked about recently, I try to maintain my blood sugar at the same levels as a non-diabetic as much as possible.  The whole point of doing that is to try to prevent long term complications, including heart disease.  I’ve had more than one physician say something followed by “because you have diabetes,” and this is the latest and most infuriating instance.  But this isn’t a one size fits all disease.  Please don’t jump to conclusions because the D-word is on my chart, and don’t assume that something horrible is going to happen because you’ve heard about correlations.  Your math may not be right.

This spring I walked an 8k one day and a half marathon the next.  My heart is just fine, thanks!

A New Low

My A1c this spring was 4.7%.  That’s a normal, non-diabetic result that’s lower than a lot of adults my age. It's also lower than someone who's been labeled as pre-diabetic for Type 2.  I was surprised and thrilled to see that number in March, but I’ve been hesitant to make it public here.  When you have Type 1 you’re often judged by that number alone, and people have a tendency to compare their number to other people.  I've heard "you're a better diabetic than me" and "oh, you're worse than me."  Doctors also praise or demean based on that single result:  you’re either a “good” or a “bad” diabetic.  I don’t want to play into those labels because I don't agree with them.

The reason I ultimately decided to share here is that I want people to know it’s possible to set your own goals with this disease.  The only thing my endo told me is that the goal is for diabetics to be under 7%.  He didn’t tell me what a non-diabetic result is.  When I was in the 5.5-6.0% range and he was happy with my results, I asked him what a “good” T1 result is and he said that his best patients are generally somewhere above 7%.  The fact that the goal is to be below 7 but that well managed patients are typically above 7 should tell you something about how incredibly hard it can be to live with Type 1. 

The more I read about T1D the more I questioned why my goal shouldn’t be to try and have “normal” blood sugar.  If the long term danger with any kind of diabetes is spending a lot of time with elevated blood glucose, why wouldn’t my goal be to have levels that aren't elevated?  4.7% means my BG averaged about 90 for the 3 months leading into my appointment.  When I was diagnosed in 2014 my A1c was 8.4%, translating to an average blood sugar of 222 – the official goal of 7% comes out to around 170.  For my lifestyle and where I am today, that's high.  For a lot of other people, that’s a destination.  That’s OK.  With a disease where all of the day to day management falls to the patient (or their parents), it seems reasonable that we each set our own goals.

Initially I wanted to reach and stay under 6%, and for my first 2 years I achieved that.  When I added my CGM in 2016 I had more information available because I could see my number every 5 minutes.  More data means I can react more quickly to changes up or down.  Since I decided to get a Dexcom my A1c has been under 5.4% or less.  I was honestly ecstatic when my doc handed me the sheet with the 4.7 - I knew I'd like where I was but wasn't expecting what I saw.  Now that I know I can do it, my goal is to keep that number under 5%.  If your goal is to beat 6% or 7% or 8%, go for it!  Maybe when you get there your goal will change again, maybe it won’t.  But I think T1s should know that it's possible to set any goal you want, and that’s why I’m going public.

Coming up with titles for blog posts is something I struggle with almost every time.  For this post I had the title before I wrote a word.  As nerdy as it is, as soon as I thought “A New Low,” I thought of “A New Hope,” A.K.A. Star Wars.  May the Force be with you.

My Diaversary

4 years ago today my new endocrinologist told me I have Type 1 Diabetes.  He showed me how to check my blood sugar, gave me my first insulin injection and sent me on my way with a stack of prescriptions for the test strips, needles and insulin that were about to become part of my new normal.  The clearest memory I have of that day is that I held back my tears until I’d walked out of the office into the parking lot.  I was proud that I didn’t explode into hysterics in front of him, that I delayed the breakdown until my friend and I were outside.  All I really knew about T1 at that point was that it was permanent and that my diagnosis wasn’t good news.  I was terrified.  I hoped he was wrong and that the blood work he ordered would prove I had Type 2 instead, which felt much less severe.  I didn’t get my wish.

My dad recently asked me to remind him how I was diagnosed, and I realized I haven’t told the whole story here.  The truth is I’m lucky, and that my T1 was found almost accidentally and well before I got so sick my life could have been in danger.  In the spring of 2014 I knew something was wrong.  I was losing weight inexplicably, but I ignored it other than a passing mention while joking “I hope I don’t have cancer.”  At some point I started having heart palpitations and shortness of breath, and after fighting her for a few days I let my friend take me to the ER.  When my labs came back I found out I was so anemic I was close to needing a transfusion.  That was the cause of me feeling sick, and we soon found out it was due to uterine fibroids.  But the doctor in the ER also asked me how long I’d been diabetic.  What?  I’m not diabetic.  My blood sugar that evening was 300, so they told me to see my doctor to get rechecked.

Like a lot of people, I didn’t have a primary care doctor.  I rarely get sick, so I’d just go to the clinic at work when I thought I had something like strep throat.  I scheduled an appointment to get my blood drawn again, not really thinking more than “this is odd.”  The PA left me a voicemail the next morning telling me I have diabetes, I should pick up a prescription for Metformin at CVS, and I need to make an appointment with an endocrinologist.  That was it.  She believed I had Type 2, of course, and as unceremoniously as possible I was diagnosed with diabetes via voicemail.

Over the next month I dutifully took my pills, had a hysterectomy to take care of my anemia situation, and kept any mention of my new diagnosis from my parents until I had more details from an endo to share with them.  It turns out the Metformin did nothing for me – you can only improve your receptiveness to insulin if you’re making enough of it in the first place, and I wasn’t.  When I finally saw the endocrinologist on June 24 I found out my A1c was 8.4%, which means my glucose was averaging about 222.  That’s a big number, but I say I was lucky to be diagnosed when I was because if I hadn’t gone into the ER for the anemia my sugar would have kept climbing and could have realistically landed me in a hospital in bad shape.

My joke is that my uterus tried to kill me.  But if you think about it another way, my uterus may have saved my life by helping me find out that my pancreas was also trying to kill me.  I had an appendectomy in 2001, so that makes 3 organs that have tried to take me out.  I hope there aren’t any others planning to come after me!

I recently found this picture of me taken 4 days before that endo appointment.  I can see how thin I was – I’ve since put back on the 15 pounds I lost before my diagnosis, plus a few bonus pounds.  I can only imagine how much more weight I’d have lost if I didn’t get diagnosed when I did.  I’m grateful for my accidental diagnosis, and to the friend who dragged me to the emergency room that day.  I’m lucky to be here.

The Bad Doctor

I recently saw my internist for my annual physical, and while I was there he reviewed a printed copy of my lab work.  Those labs included my A1c, an estimate of my average blood sugar over the past 2-3 months.  Here’s a summary of that conversation, along with my inner monologue as it progressed:

Doc, looking at my A1c:  “You’re not diabetic!”

Me:  “I wish, but with Type 1 that’s not going to happen.”  (Is he joking?  He has to be joking.)

Doc:  “Do you take medication?”

Me:  “Um…just the insulins.”  (Oh crap, he’s not joking.)

Doc:  “Do you get that from me or an endocrinologist?”

Me:  “My endocrinologist.”  (I need a new doctor.)

This really happened, with a doctor associated with one of the highest rated hospitals in the country.  I realize he’s not a specialist and isn’t going to know all of the minute details about T1 vs. T2.  That’s exactly why I don’t see him for my Type 1.  However…he’s a doctor and should at a minimum know there are two different types of diabetes and that no matter how low my average is I’m still diabetic because there is no cure.

By the end of the appointment he was referring to me almost as a diagnosis code, calling me “diabetic type 1.”  I’m not sure what the exact problem was.  Does he not know what Type 1 is?  Does he think it’s really just “juvenile diabetes?”  Maybe he thinks I’m actually Type 2?  He did tell me my A1c is impossible for a T1, which is obviously incorrect.  Regardless, this is the last year I’ll be using this doctor.  Next year I’ll move on and hopefully I have better luck with the next contestant.  If not I’ll keep trying until I do!

This has nothing to do with T1, it's my sister's beautiful doodle challenging me to get a good picture of her last weekend.  She'd rather lick my face than cooperate.

Wake Up Call

My phone rang this morning at 4:21.  Here’s the conversation that followed…

Me:  What’s wrong, why are you calling me?

Friend:  Are you OK?  Your low alarm’s been going off.

Me (on the way to the bathroom to test):  I don’t know, nothing went off here.  Oh, it says 50.

Friend:  It’s been going off for a while.

Me:  I’m 57, so the alarm is right.  I’ll eat something and go back to bed.  Thanks.

My phone isn’t always making noise lately – sometimes a CGM alarm or a text notification will only vibrate, which typically won’t wake me up.  I realized on my way back to bed this morning that my friend had texted me 3 minutes before she called, and the first low alarm had gone off 15 minutes before that.  I ate 6 peanut butter M&Ms and went back to sleep, and from there it looks like my CGM went a little nuts; another alarm sounded loudly later in the morning.  Unfortunately the monitor thought my sugar was 45, the reality was actually double that. 

Did my friend, who I’ve called my chief sugar stalker, save my life this morning?  Probably not, because a 57 isn’t desperately low.  But I could have kept falling, and that’s not a risk either of us want to take.  The share feature is a big part of why I got a Dexcom in the first place.  It’s good to have back up, a safety net that makes all of us feel like I’m safer than I might have been before.  It’s not perfect, or it wouldn’t have gone off later for no reason at all.  As frustrating as those false alarms can be, that’s a risk I’m willing to take.  Fortunately my friends are willing to put up with them too.

I was low for a while the first time, though given the random looking numbers that followed I suspect the number started going up much faster than what was reported.  The second time the CGM couldn't have been much more inaccurate...what looks like a sudden increase in my blood glucose was after I recalibrated and told the Dexcom app it was wrong.  The red line is my low boundary of 55, the yellow at the top is 140.

That Was Unexpected

I hate public speaking.  No matter how many meetings I lead or presentations I give, I'll never be a fan of standing at the front of a room.  I'm good as long as I'm in a chair, but the second I get on my feet my hands start to shake.  If I’m particularly stressed out I’ll hear the shaking sound in my voice whether or not anyone else in the room notices.  Standing up in front of a crowd is definitely not something I volunteer for.  So when the local JDRF chapter asked me to serve on an adult discussion panel at their annual Type One Nation Summit last weekend, naturally I said…yes.

Why?  Don’t get me wrong, a large part of my brain twitched first at reading the request and again at the realization that accepting was the only good answer.  But I’ve had multiple conversations with JDRF employees about my disappointment that many JDRF events seem to be attended primarily by parents of T1s and by very few adults who actually live with this disease.  Finding out that over 100 adults had already registered for a panel with other adults was incredible news and I couldn’t say no.  The plan was for a few of us to share our stories and hope that having this opportunity to be together would trigger discussion.

Going into the day, I had a picture in my head of what a “panel” would look like.  We’d sit calmly at a table in front of a room and would never have to stand up to address our audience.  There would certainly not be a microphone present.  My hopes were dashed pretty quickly when I saw the room.  We had chairs, but no table to hide behind.  There was a podium centering those chairs, with a microphone stand directly in front of that.  Uh oh…

I survived.  My hands shook every time I accepted the microphone handed to me, my voice stayed calm, I spoke about my own experiences and choices with T1D, got at least one laugh from the room, and didn’t burst into tears or curl up into a ball in the corner.  The four of us at the front of the room covered a wide range of ages, time since diagnosis, and ways for approaching life with Type 1.  Questions in the room included topics about diet, exercise, support systems, needs from loved ones and more.  The big take away for me was that I’m definitely not the only one – T1D adults wonder how other T1 adults manage this disease, even if I don’t see them out and about at events.  If I’m able to help that conversation happen more frequently, I’m in and want to help.

My second take away was this:  I’m really proud of myself for what I did last week.  It wasn’t a huge commitment and required no prep other than showing up, but it was an experience I would have said no to in a heartbeat not so long ago.  I’m proud of myself for saying yes, and I’m proud of myself for actively participating and sharing my story in front of 100 people with a microphone in hand.  I didn’t see any of this coming, but it worked and without question I’d do it again.

Photo reprinted with permission from Clicks by Kat.

On a side note:  because it always happens to me, I often notice when another speaker’s hands are shaking.  In the session right after the panel, an endocrinologist from Yale spoke about advancements in T1 technology.  Though I would have loved to hear much more detailed information in her presentation, she spoke well.  Her hands were shaking.

Second note:  one of the questions to the panel was whether anyone on the panel followed a low carb diet, and I was the only person to say yes.  In spite of my typical diet, I joked near the end that my friend and I might be going for pizza after the Summit…so after explaining how well I do by managing Type 1 with low carb, a picture of lunch is below.  I think I earned the indulgence.

I'm Not a Warrior

During Diabetes Awareness Month last November, continuous glucose monitoring company Dexcom ran a campaign called “Warrior Up.”  They invited all Type 1 “warriors” to share a picture or video of their “warrior call” on social media, and in return they would donate to one of four deserving Type 1 charities.  Fun idea…you scream and/or look tough on camera and some good causes benefit.  Since November, Dexcom has continued the warrior theme with the hashtags #WarriorResolution and #WarriorWednesday, and showcase “Dexcom Warriors” on their website.

The theme of all of this is that people with Type 1 are warriors.  To me that message doesn't work.  I’m not a warrior.  I’m not fighting a war, and I’m not fighting against Type 1.  I have friends and family who’ve fought cancer and won.  I’ve fought off a cold and strep throat.  But T1D?  I’m not fighting this disease because it’s not something I can beat…there’s no cure, no remission and nothing I can do to bring that about.  I had to make peace with that a long time ago.  Does that mean I’m glad I have this disease or that my diabetes and I always get along?  Not remotely.  Most days we have a very delicate truce…T1 doesn’t kill me and I don’t give in to frustration when T1 doesn’t cooperate with my plans.  We have our moments, and even entire days where we really don’t like each other.  But whatever our relationship, I’m no warrior.

I don’t mean to downplay how hard Type 1 is.  Even on days where everything goes exactly as I want things to go, this is hard.  And perhaps most significantly, it’s a constant factor in everything I do all day.  But if I see T1 as the enemy, as something I’m fighting against, I’m focusing on the wrong thing and putting this disease ahead of living.  So with thanks to Dexcom for the technology I love for managing this disease, I’ll say no thanks to the warrior title.  That fight isn’t for me.

Diabetes vs. Cancer?

“I’d rather have my breast cancer than your Type 1.”  My friend said this recently after we had a conversion with someone who found out about my T1 and mentioned that a family member had diabetes but they didn’t know which type.  I told my friend that I’d rather have Type 1 than Type 2, which led to her quote above.  We joked about it, because choosing cancer over T1D sounds shocking.  Choose cancer? 

As someone who hasn’t had a cancer diagnosis, there’s no chance I’d elect to get one.  But I understand where she’s coming from.  For my friend, cancer was temporary.  She had surgery, then chemo, then radiation…and then the celebration of “ringing the bell” and being called a survivor.  She was done and we all celebrated!  Within a year of finding a lump, the cancer was gone.  But that’s not the end of the journey.  I’ve watched her go through multiple reconstruction surgeries, memory loss, neuropathy taking away feeling in her feet, and the fear of a recurrence or secondary cancer.  Cancer isn’t just here, treated and done.  It’s gone and my friend is fortunately well.  But it wasn’t just one year and done.

My friend’s perspective is that cancer came and went, but Type 1 goes on forever.  Each year she celebrates the day she became a cancer survivor.  I celebrate my “diaversary,” the day that I was diagnosed and my life changed permanently.  There’s no escape, there’s no day where this ends.  And it could kill me, just like cancer could.  That’s the comparison my friend sees.  She fought, she won, and I…I’m going to have T1 for the rest of my life unless medical science pulls off something I’m hoping for but not expecting.  Type 1 is the gift that keeps on giving…and taking…and could take me out.

Another factor is one that same friend and I have discussed in the past – it’s much easier in many cases to be the patient than the observer.  She barely remembers what she went through with cancer because she was in the middle of it.  The rest of us remember watching her suffer.  Living with T1D is just “what I do” every day because this is my life.  But she sees me stabbing my fingers, shaking from lows and waking up to alarms at 2 AM and constantly monitoring every tiny detail, and she doesn’t want any part of it. 

Does my friend’s statement make sense?  It’s all about perspective.  I understand why she feels the way she does.  But this is a great example of choosing the evil you know.  I wouldn’t pick cancer over T1, and she wouldn’t pick T1 over cancer.  Given the chance nobody would choose either of these.  But she survived cancer and I’m doing pretty well with Type 1, so it makes sense we’d both pick our own disease.  It’s too bad we’re in a place where we could have this conversation, but I’m grateful we’re both here to have it at all.

Food Wars

When I was diagnosed with Type 1 I spent a lot of time reading message boards on the internet because in my experience the best way to learn about a disease is from the people who live with that condition.  One of the first things I saw, repeatedly, was the insistence that people with T1 can eat anything they want.  Want a piece of cake?  Figure out the carb count, take the appropriate dose of insulin and you’re good to go.  I found this information fascinating because I’d been eating a low carb diet for years and knew well that carbohydrates raise blood sugar.  If my body no longer made the insulin I needed to remove sugar from my blood, why would it be OK to eat any carbs I wanted?

One of the earliest blog posts I wrote was called “Yes, I Can Eat That.”  I discussed my typical low carb way of eating but I also responded unequivocally to the “can you eat that” question that well-meaning friends and family sometimes ask.  The reality is that the diet debate is a regular one in the Type 1 community and people on either site can be quite passionate about their perspectives.  Many doctors encourage their patients or the parents of patients to continue living “normally” after a diagnosis.  After all, insulin can be used to account for the sugar in meals, so why should anyone be denied their favorite foods?  But here’s the catch:  the insulin I’m injecting before or after a meal isn’t the same insulin my body used to make.  It doesn’t work the same as what your body makes.  A healthy pancreas produces the necessary insulin quickly, and it rapidly escorts sugar out of the blood stream.  The synthetic insulin I inject takes effect more slowly and works its magic over several hours.  That means that even if I give myself exactly the right amount of insulin for whatever I’m about to eat, my blood sugar is going to go up.  Maybe up and then up some more depending on the food, before the insulin brings me back down hours later.  The more time I spend with my blood sugar running high, the more chance there is for damage…to my vision, my nervous system, etc.  I’m trying to avoid that damage.

For me, the way to do that is to skip the carbs in the first place.  If I minimize the food I’m eating that messes with my blood sugar, the easier it is for me to keep that sugar in healthy place.  I still need to inject insulin for pretty much everything I eat because protein raises blood sugar, but it’s a lot less insulin and food that has a lot less impact on me in the first place.  I see people online who say they can eat “normally” and maintain good blood sugar and a fairly low a1c.  I’m not saying it isn’t possible; it just isn’t possible for me.  It’s similar for me to any debate about approaches to dieting for weight loss.  I know people who’ve had great success with Weight Watchers, but it’s not for me.  Within the first day or two, I’d likely be awaiting trial for homicide.  Finding what works for you makes the most sense whatever the context.  For me what works is eating a high fat diet with minimal carbohydrate from any source, and I’ve got the Dexcom trends and a1c to prove it.

The problem that happens online when people discuss their dietary choices is that people tend to be convinced that their way is the only right way.  There are those that think low carb is a horrifying way to live, those who believe that high fat is dangerous, and those that believe strongly that a "normal" diet is their right as a Type 1.  On the flip side there are people like me who believe low carb is the easiest choice...but even within that community there are debates about whether high fat or high protein are the way to go.  I believe there's no one answer for everyone, but I wish everyone knew there were options.  After all, if Weight Watchers doesn't work there's always South Beach, or the Mediterranean diet, or any number of other choices.  The same is true with Type 1.

A Year Full of Highlights

I don’t know that I’ve ever consciously done this before, but with the new year upon us I decided to take a look back at 2017 before looking forward to 2018.  It was a busier year than I realized once I started scrolling through my photos and I think this is something I’ll start trying to do every year.

What did I do this year?  For starters I spent a week at Disney World with my mom celebrating our birthdays.  We take a trip together every year and this was our second time at Disney.  On our first trip we had a breakfast at the Animal Kingdom Lodge and I made it my goal to stay there when we went back so that mom could go out on a balcony every morning to watch the animals.  We weren’t disappointed!

Sports were a big part of the year.  Growing up in Detroit I became a Red Wings fan in high school.  2017 was the last year for the team to play at Joe Louis Arena, and a friend took me to see one last game there…my first since I was in college.  Early in the baseball season, we went to see the Tigers play the Indians in Cleveland.  Detroit got the win that day and gave me completely unwarranted optimism for the season ahead.  Of course there were plenty of Monsters games through the year too, including free glass seats behind the goal for a game which were outstanding!  At the end of the 2016-2017 season the casino downtown held a photo contest to give away 3 signed goalie sticks from the Calder Cup winning team the previous year.  My friend had a great idea for how we should pose and she won!  That stick is one of my prized possessions and hangs in my living room where I can look at it daily.

There were plenty of shows and events through the year too.  I saw the Avatar Cirque du Soleil show and more concerts than I’ve seen in years thanks to a ticket sale promo in the spring, including one combining Joan Baez, Mary Chapin Carpenter and the Indigo Girls.  I finished my third half marathon, and we signed up to do our fourth next year.  I visited Alabama for the first (and last) time and New Orleans for the first (and hopefully not last) time.  I had the privilege of seeing an inspirational Tuskegee Airmen speak one afternoon at work.  I spent time with close friends that I don’t see nearly often enough.  And I visited my family in Michigan to see my nephew compete in the “Battle of the Books” and sing in “Bye Bye Birdie.”

It was a good year for my Type 1, too.  My 2 visits to the endocrinologist brought new record low a1c results of 5.1 and 5.4%.  I volunteered to be a mentor to newly diagnosed adults…though it appears many of them are as reluctant to ask for help as I was.  I shared 16 blog posts that included sharing the horror and triumph of an insulin overdose, showing the 248 needles and 292 test strips I used in a month, and explaining why the ongoing health care debate scares me.  I posted 5 days in a row during my first ever Diabetes Blog Week, and talked about my theory on a potential cause for my diagnosis.  Sadly, the T1D community and the world lost Mary Tyler Moore, who like me was diagnosed as an adult.  She was the International Chairman of JDRF for over 30 years and a strong voice advocating for Type 1 awareness and research. 

What’s coming in 2018?  That fourth half marathon for sure, though my friend and I both have some serious work to do if we want to set a new record!  I’d like to go ice skating this year, I’ve been thinking about it recently and I’d love to get back on the ice.  We’re talking about another trip to Detroit to see a Red Wings game, this time at the new Little Caesars Arena.  More time with my family, and less time saying “we should get together more often” to friends.  In the T1D space, I want to maintain my a1c below 5.5 and maybe bring it down further.  Though saying it is meaningless without follow through, I’d like to spend more time blogging and sharing T1 news on my Facebook page.  I’m also looking for more ways to get involved with JDRF, but I’m not sure what that looks like yet. 

2017 was a good year and I’m grateful to every one of you that has joined me along the way.  There were over 1,200 views of the posts I wrote this year, which is pretty amazing considering I expected just a few people to tag along – and 2 of them I call Mom and Dad!  Thank you all for being engaged, thank you for supporting me and thank you for being part of my life.  Happy New Year!

Clockwise from the upper left:

1. Epcot with Mom
2. Waiting to get into Joe Louis Arena
3. Bourbon Street in New Orleans
4. Progressive Field for Tigers vs. Indians
5. Running the 50/50 for JDRF at the Cleveland Monsters
6. Tuskegee Airman Dr. Harold Brown
7. Cleveland Rite Aid half marathon medal
8. Signed Cleveland Monsters goalie stick
9. Monsters glass seats behind the goal