The First Five

5 years ago I was diagnosed with Type 1 diabetes. In that moment of shock everything about my life changed forever. I was terrified, I was devastated and I had no idea what this new diagnosis meant. I knew only 3 things about T1: it happened to kids, it meant injecting insulin, and I didn’t want it. At that same moment nothing in my life changed at all. I was still me, still had the same family and friends, the same job and the same interests. I still had the same life I had the day before.

Everything changed and nothing changed, and out of that illogical equation comes this unlikely result: my life got better. Bear with me on this, I don’t think I’ve lost my mind. All of the good things that were part of my life 5 years ago are still here…a family I love, close friends that I can count on, a job that keeps me challenged…T1 didn’t take them away. But on top of the good I already had, think about what I’ve added…I’ve met people and made friends in the T1 community and I’ve become involved in a cause that couldn’t be more personal. I’ve gained an increased focus on taking care of myself, and I’ve gained a patience with myself that continues to shock my mom when we talk. And not surprisingly, I’m much more able to appreciate every opportunity I have to do new things and make new memories, because I’m reminded daily that I could be here anywhere between 5 more minutes and 50 more years.

Is life all sunshine and roses? Hell, no! I don’t cry and yell anymore, but you could absolutely catch me shaking my head and talking to myself when my numbers don’t quite add up. It can be frustrating, but I don’t get angry or upset when that happens because even when I don’t know why something happens with diabetes, I still know that I need to shut up and fix whatever's going on.

In the 5 years since my diagnosis I’ve been able to do some pretty cool things. I took a second trip to Disney World with my mom, I was there when the Monsters won the Calder Cup, I went skydiving in Las Vegas and I’ve managed to finish 3 half marathons since the first one when I’d actually been told I had Type 2 diabetes. I’ve visited new places, gotten to watch my nephew grow into a 14 year old man child, and I moved from a pretty good job to an even better one. I’ve also gotten new technology, adding a CGM after 2 years and getting the upgrade from the Dexcom G5 to G6 last year. And I’ve gone from having zero clue about Type 1 to a place where most of the time on most days I feel like I can handle things. Those other times…I just keep muttering to myself.

How am I celebrating my fifth anniversary? First, I’m going to eat the things I rarely eat. A lot of T1Ds eat pizza and ice cream as often as anyone else, but it doesn’t work for me or my weight. For my diaversary…I’m choosing gluttony. Second, I’m planning a vacation to Cooperstown, NY. I’ve always wanted to see the Baseball Hall of Fame and I think this is the summer to make that trip happen. I’m planning to go by myself, a first for me. I suspect my reaction to a solo vacation will be a mix of love and hate, but I won’t know if I don’t go. I made a lot of great memories over the last 5 years and it’s time to get started on the next 5.

I follow too many Type 1 pages on Facebook and need to thin the herd. But sometimes there are topics like the one in the screenshot below that catch my attention. Being diagnosed as an adult gives me a different perspective than a lot of other T1s, and you can see my answer. A few hours after posting that I got a notification that my dad liked a comment I’d posted. I couldn’t remember any comments that day until I saw it…the thumbs up is his. Thanks for getting it, Dad. I’ve done some awesome things since I was diagnosed, but they weren’t in spite of Type 1. They were all things I would have done anyway, but I'm proud that I did them with Type 1.

Riding Flying Polar Bears

5 months ago I recorded an episode of the Juicebox Podcast with Scott Benner.  For those of you who have no reason to have heard of Scott or his show, his now teen-aged daughter Arden was diagnosed with Type 1 as a toddler.  His podcast focuses on T1D – Scott talks about how he and his family manage diabetes, he interviews people who work in the diabetes industry, and he talks to people like me about life with Type 1.  You can check out his blog and past episodes of the podcast at Arden's Day.

Until a year ago I’d never listened to a podcast on any subject and didn’t know that Type 1 podcasts were a thing, but I met a woman at the local JDRF Summit who suggested I contact Scott to talk about managing T1 with MDI – multiple daily injections.  I was curious and started listening to an episode every day at the gym.  Soon after that I reached out to Scott and we scheduled a call…we talked back in October and he posted our episode this week.

I won’t spoil things for you…if you want to know about our conversation you have to listen!  But I’ll tell you I had a great time talking to Scott, and I laughed again a bunch of times as I listened to the episode this week.  In some ways, we manage diabetes completely differently.  Scott’s daughter eats high carb foods that would make me gain weight if looked at them.  You know, foods that are pretty normal for a kid her age.  I eat a low carb, high fat diet I started long before T1 but that helps me reduce the size of sugar spikes.  Arden wears an Omnipod insulin pump; I use pens and do an injection every time I’m about to eat or need to bring my sugar down.  But the reality is that our principles in managing diabetes are pretty much the same – try to have basically normal blood sugars, don’t be afraid of insulin, don’t allow a high sugar to stick around, and most importantly…live life and enjoy it without spending all of our time focused on diabetes.  Life’s too short for that nonsense.

If you’ve listened to the episode, keep scrolling for an update since we recorded – no cheating!  If you haven’t listened yet either follow this link or go to your favorite podcast app to find episode 216 of the Juicebox Podcast.  It’ll all make more sense if you do…without listening, you’ll never understand this post’s title.  And I’m not explaining!  I can't show you a picture of a flying polar bear, much less me riding one, so here's one strolling instead.  Just imagine if he came flying over the Great Lakes and you could get a harness on him.  Come on, just imagine for a second...

You can keep going, now that you've listened and know why there's a polar bear here...

UPDATE:  I saw my endo Thursday, coincidentally just days after Scott released our episode.  My A1c is 5.1%, up a bit from last year’s 4.7%.  I’m not remotely unhappy with that number, it’s a great average and I’m doing well.  We recorded the episode not long after my last appointment, and you heard me tell Scott that my doc wanted to look at my Clarity reports^* – he wanted to see more detail than just a 90 day average trend because he’s convinced I’m running low blood sugars all the time and that those are bringing my average down in an unhealthy way.  6 months later, he didn't disappoint and wanted me to hand over my phone so he could see the details himself.  And…I don’t think he’s going to ask to see them again.  He was visibly surprised to see what I could have told him to expect…things are generally pretty consistent when I’m home and doing things my way.  Below is the overlay chart of the last 7 days that I found still open on my phone when I got home from my appointment.  I’ll keep the graph from my week on vacation with Mom to myself, it’s nowhere near this pretty. J

Disclaimer...they don't all look as good as this one.  There's usually a lot of consistency, but the last week has been exceptionally flat.  Normally there's a spike or two up to at least 150, if not higher.  This was particularly good timing right before seeing an endo who has trust issues.

^{* Clarity is an app from Dexcom that shows all kinds of different trends.  I can see data for individual days, overlays like the one above, look for patterns...and see more statistics than most people care to see.  It's a fun toy to play with once in a while.}

Another Pretty Great Year

After doing a look back at 2017 last January, I think I'll make it an annual tradition.  It’s amazing how much happens over the course of a year…and equally amazing how much of it you forget until you try to remember. 

 

What happened in 2018?  Some things are easy to remember.  Mom and I took our annual vacation, this year going back to our usual destination in Las Vegas.  We eat well, have the occasional cocktail, see a show, and this year the slots played nice with mom a few times!  I made a bunch of trips up to Michigan to see my family this year, including the fall trip to see my nephew in the school musical.  Next year when he hits high school the schedule will change but I still expect to be there!

Sports were a big part of the year, as always.  I saw a ton of Monsters games, met a lot of other fans and accumulated a bunch of player jerseys that I really don’t need but always wind up wanting.  I didn’t make it to Little Caesars Arena yet to see the Red Wings, but checked out the outside on a trip to Detroit to see the Tigers play.  I was there on a dream trip to see Alan Trammel’s #3 be retired, and had the chance to meet him and get a ball autographed.  No Tigers fan will ever forget Tram and 1984, and it was a thrill.  I mostly didn’t get teary, but it took a fight!

My friend and I successfully completed our fourth half marathon, though what I thought were shin splints turned out to be compartment syndrome and limited me horribly.  It’s still an issue, but after working with a physical therapist I’ve changed my gait and have every intention of finishing race #5 in the spring.  I saw a Cirque show here in Cleveland, another bunch of great concerts including Pentatonix, and I was mesmerized watching John Williams conduct the Cleveland Orchestra for highlights of his most memorable movie scores.

I saw the Gulf of Mexico from Biloxi and walked past the markers describing some of the incredible destruction left by Katrina.  I got to go through the Star Wars costume exhibit in Detroit.  I dog sat for 2 sweet girls, and carried the American flag out on the ice at the Q.  I got to eat my dad’s “famous” French toast (it should be!) and see friends I’ve had for years but still don't see nearly often enough.

What happened with diabetes?  I changed my long lasting insulin at the insurance company’s demand, I upgraded my Dexcom from the G5 to the G6, and added an Apple watch to monitor my blood sugar without touching my phone.  I got my A1c under 5% and kept it there at both of my endo appointments.  I wrote 13 blog posts on topics including the problems with my GP (The Bad Doctor and Correlation is Not Causation), why I don’t think that I’m fighting against Type 1 (I’m Not a Warrior) and the story about how lucky I got when I was diagnosed with T1D (My Diaversary).  I participated in the JDRF Type One Nation Summit and started getting involved in planning the 2019 version too.

What’s up for 2019?  That’s anyone’s guess.  But if my legs cooperate and my friend recovers well from recent knee surgery, we’ll be back for the fifth iteration of our half marathon tradition.  I’d like to try again to see a Wings game in Detroit and definitely another Tigers game.  I’m going to celebrate the 5^th anniversary of being diagnosed with Type 1, but I don’t know what that will look like yet.  I’m going to keep trying to dedicate more time and attention to this blog and my Facebook page, and to raising T1 awareness.  I’m pretty sure I’ll have fun along the way, whatever this year brings.  Oh, and I said last year that I wanted to go ice skating.  That was a fail for 2018 that I fully intend to rectify in 2019.  I’ll probably post evidence once I make that happen, so be on the lookout!  If I think of it I'll be sure to wear one of my T1D shirts!

It’s been another great year, and I continue to be grateful for those of you who pop in to see what’s going on in my life…whether with T1D or otherwise.   Over 800 times you clicked into these blogs posts, you checked out the links on my Facebook page and encouraged me to keep sharing my story.  THANK YOU.  Mom and Dad, I’m glad you keep reading too. J  Happy New Year!

Pictures left to right and top to bottom:

• Mom and I gorged on Ben & Jerry's in Vegas
• Meeting Alan Trammell
• Dog sitting for Molly and Gracie
• The new Dexcom G6
• After half marathon #4.  Next year I'm putting the Dex on the front somewhere...
• John Williams!!!
• He's not so intimidating now, is he?  Star Wars costume exhibit.
• My game worn Nathan Gerbe jersey from "faux back" night
• Gulf of Mexico from behind the hotel in Biloxi
• My sister's doodle...she's the only family member who poses for me!

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.