Sunday, July 15, 2018

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.

Sunday, June 24, 2018

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.

Saturday, June 23, 2018

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.

Sunday, May 13, 2018

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.

Sunday, May 6, 2018

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.

Sunday, March 11, 2018

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.

Sunday, February 18, 2018

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.

Sunday, February 11, 2018

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.

Monday, January 1, 2018

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

Sunday, December 17, 2017

The Health Care Debate

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

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

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


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