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.

Thursday, November 30, 2017

48 Hours with Type 1

Since November is National Diabetes Awareness Month in the U.S., there are all sorts of ways that people find to try to show the magnitude and impact of Type 1.  For example, last year I saw several pictures of pumpkins painted blue for diabetes awareness, with a month's worth of syringes sticking out of the pumpkins.  This year I saw an idea from the mom of a T1 kid that really struck me:  she asked her friends and family to volunteer to get a text from her for one day, every time she did anything diabetes related.  My first thought was "what a great idea," promptly followed by my second thought, "there is absolutely no way."  I wouldn't do that to anyone, but I realized I could approximate it by tracking all of my T1 moves and decisions through an entire day.

I deliberately chose a "normal" day, where I went to work as usual and ate only the foods that I cooked myself and eat regularly.  Since T1 isn't predictable, the day I picked was wildly out of control, largely due to a bad CGM sensor.  To give you comparison on how insane Monday was, I tracked a second day that I hadn't planned.  This is 2 days in the life of my Type 1.  To the people I might have asked to receive those texts all're welcome!

Monday, 11/28:
  • 4:02 AM:  High alarm showing 157.  Finger poke showed 185, and I gave a 5 unit insulin dose.
  • 5:41 AM:  Low alarm showing 58.  Finger poke 82, so I recalibrated in the Dexcom app to correct the reading.
  • 5:56 AM:  Low alarm of 56.  Based on the alarm 15 minutes earlier I did something I've never done before:  I closed the Dexcom app so I could go back to sleep, and took off my Pebble watch so I could avoid the vibrations telling me there wasn't a Dex signal.
  • 6:50 AM:  Wake up and reopen the Dex app.  Finger poke showed 54, so I ate 2 glucose tabs to correct.
  • 6:58 AM:  Respond to check in text from first line of defense Dex-watching friend.
  • 7:16 AM:  Respond to check in text from second line of defense Dex-watching friend.  Dex shows sugar is 69 and climbing.
  • 7:46 AM:  Pack D supplies in purse and check watch to see 97 before leaving the house.
  • 8:26 AM;  Unpack D into my desk.  Finger poke shows 118 vs. CGM 10.  Recalibrate Dexcom, give 1 unit insulin to correct and 2 for breakfast.
  • 8:50 AM:  Log breakfast in MySugr app.
  • 10:42 AM:  Check Dex trend, currently 100.
  • 11:16 AM:  Watch shows 122, finger poke 159.  Recalibrate again and take 3 units.
  • 12:02 PM:  Dex has 125, finger poke is 112.  No recalibration, dose 3 units for lunch...ugly bleeder for this one!
  • 12:33 PM:  Log lunch in the MySugr app.
  • 1:46 PM:  Dexcom shows 104.  No finger poke.
  • 1:59 PM:  Before leaving my building to drive to a presentation in another building, Dexcom shows 104, finger pokes are 86 and 91.  Recalibrate to be safe before long meeting.
  • 4:56 PM:  Unpack purse at home and move insulin back to the fridge.  Dex shows 66, finger pokes are 86 and 82.  Recalibrate.
  • 5:10 PM:  Insert new Dexcom sensor replacing 8 day old sensor gone bad.
  • 7:12 PM:  Calibrate new sensor with tests of 123 and 126.  Dose 2 units correction and 3 to cover dinner.
  • 7:29 PM:  Log dinner in MySugr app (pork rind breaded chicken tenders!).
  • 8:46 PM:  Urgent low glucose alarm 54, finger pokes 83 and 76.  Recalibrate.
  • 9:21 PM:  Urgent low glucose alarm 51, finger pokes 72 and 75.  Recalibrate.
  • 9:25 PM:  Give nightly basal dose of Toujeo.
  • 9:55 PM:  Urgent low glucose alarm of 49, finger shows 80.  Recalibrate.
  • 10:57 PM:  Dexcom shows 121 and rising, finger poke is 91.  Recalibrate.
  • 11:30 PM:  Admit surrender on new sensor and replace with a second new sensor.
  • 11:40 PM:  Finger poke is 112, dose 1 unit before bed.
Tuesday, 11/29:
  • 2:33 AM:  Calibrate new Dexcom sensor with results of 95 and 98.
  • 6:08 AM:  Dexcom shows 206, finger poke is 118.  Recalibrate and dose 1 unit.
  • 7:00 AM:  Pack D gear for work.
  • 7:33 AM:  CGM shows 106, finger poke 110.  Dose 2 units for breakfast and 1 correction.
  • 7:51 AM:  Log breakfast in MySugr.
  • 9:20 AM:  Dex shows 93.
  • 9:54 AM:  Dex is 89, finger poke 91 before heading into a 2 hour meeting.  Glucose tabs into my pocket.
  • 12:11 PM:  Dex is 90, finger poke 89.  Dose 3 units for lunch.
  • 12:30 PM:  Log lunch in MySugr.
  • 3:01 PM:  Phone died during 2:00 meeting showing 119.  Finger poke 119, dose 1 unit.
  • 3:15 PM:  Afternoon snack, log in MySugr.
  • 4:40 PM:  Check before yard work shows 73, eat 3 peanut butter M&Ms to prevent a sugar drop.
  • 6:31 PM:  Dex requests 12 hour calibration.  CGM 108, finger poke 130.  Dose 2 units.
  • 6:55 PM:  Dose 3 units before dinner.
  • 7:14 PM:  Log dinner in MySugr.
  • 8:15 PM:  Nightly basal dose of Toujeo.
  • 9:06 PM:  glance at watch, shows 104.  Recalibrate after finger poke of 94.
  • 11:22 PM:  Finger poke 96, Dex 93 before bed.
That's a rough snapshot of what T1 looked like for me over 48 hours.  I'll admit that I check my sugar either on my wrist or on my phone a ton, but I didn't write it down most of the time because it felt ridiculous.  I ate the same meals both days, but you can see I had different results in terms of insulin needs and glucose readings, plus I checked my sugar with finger pokes far more times on Monday due to maddening technology failures.  This is what makes T1 so frustrating at times...same behavior, different result.  Even on a much calmer day like Tuesday, taking care of things is never far from my mind.

FYI:  when I check my watch, I'm still checking the Dexcom.  The sensor on my arm transmits to my phone and that transmits to the watch.  It's just another way to see where I am and is far more subtle than checking my phone.  Every time I do a finger poke, take insulin, or eat anything...I log that activity in an app called MySugr so I have history available on how many units I took for different meals and what happened after that meal.  Data!

The picture is what I use to insert a new Dex sensor.  I accidentally set this one off one day making it useless as anything other than an example.  I'd never seen the needle itself before and didn't realize it was so long.

Sunday, November 19, 2017

More of the T1D You Don't See

To go along with pictures I posted to Facebook recently for JDRF’s #T1DYouDontSee campaign, I put together a list of some of the other things that most people don’t see about Type 1 Diabetes.  I have little doubt this list is incomplete but it’s not bad.  And so, here are my things about T1 that most people don’t see: 
  • Waking up in the middle of the night sweating and shaking from low blood sugar, wondering how bad things are and how long you’ll be up this time.
  •  Finger pokes that turn into geysers and the blood spatter evidence of an assault they leave behind.  Evidence on my clothes, on my furniture, and one time…somewhere in the Planet Fitness locker room.  I really couldn’t figure out where my blood went!
  • Stares from curious people watching sugar checks and insulin injections who are nosy enough to watch but not comfortable enough to ask.
  • Math followed by more math.  What is my blood sugar, what and when did I eat last, how much insulin is already working in my blood stream, what am I about to eat, how many carbs am I eating, how much protein am I eating, what time am I going to the gym, where do I want my blood sugar to be in an hour, 2 hours, 3 hours, how much insulin do I need to take to try to get me there?
  • Spending 3 to 4 hours every weekend cooking because life is easier when you know exactly what went into every meal.
  • Wondering where the chef in a restaurant hid the sugar in dinner that led to a 250 BG.  Especially when all you ate was a plate of meat.
  • The absolute horror when your doctor suggests he’d like your sugar to be higher on average, because he’d feel like you’re safer that way.  No, no, no.
  • The joy of feeling like you pulled “it” off…whether “it” is a new best A1c, a new low carb recipe, dosing well for Chinese food, or a precise recovery from an unexpected high or low.
  • How amazing it is to have people that love you enough to accept the 2 AM CGM alarms that keep you safe…even when sometimes those alarms are false.
What you don’t see is how much time, thought and energy go into trying to not just to stay alive, but to live well.  T1D has become my way of life, but that doesn’t mean it’s the life I’d choose.  We need a cure.

Sunday, September 24, 2017

Please Help!

This isn't a post about living with Type 1 diabetes...not exactly.  It's a post about a hockey game.  I grew up in Detroit and became a hockey fan in high school when I first read an article about a young Steve Yzerman in the local paper.  I remember sitting in my parents' bedroom watching Red Wings games because nobody else in my family wanted to watch.  I learned the game and its rules and fell in love with a sport I'd never seen on a 13 inch TV long before flat screens or HD.  I cried in 1997 when they won the Stanley Cup, I may have cried again the next year when they won.  Last spring I looked at the replica jersey below for several weeks before I decided to order it, a decision I do not regret.

A couple of years ago, I learned that we have an AHL hockey team in Cleveland.  I'd been oblivious until then even thought they've been here since 2007.  A friend and I went to a game on a whim and she was hooked on a sport she'd never seen.  Since then we've become partial season ticket holders and were in the arena when the Monsters won the Calder Cup in 2016 - a lifetime highlight that neither of us will ever forget.

What does any of that have to do with T1?  That same friend and I are participating in the local JDRF One Walk this fall to raise money for the search for a cure for T1D.  At a walk kickoff event, the father of a T1 child suggested that the best way to fundraise is to involve something that you're passionate about.  Voila, we had an idea...let's run the 50/50 at a Monsters game!

A great idea, sure, but it doesn't come without a cost.  To be allowed to do the 50/50, we have to sell 200 tickets to that game.  Yes, I said 200.  The tickets are discounted, they come without any of those annoying convenience fees, and a portion of every ticket sold is donated directly to JDRF.  And if that isn't a sweet enough deal, every ticket sold will be entered in a drawing to win our 2nd row seats on 10/21 and 11/25.

We're selling tickets for $15, $20 and $25, and each ticket is roughly a $13 discount from what you'd pay buying directly from the team.  If you're in Northeast Ohio, please consider buying some tickets and supporting us - both JDRF and your favorite person with T1D.  If you aren't available on October 21 you can still donate at our walk page here.  Please share this with any friends you have in the area who might also be interested, because we need all the help we can get!  We have an event posted on Facebook at this link, and you can easily share it with your network from there.

If you'd like to be more hands on, we NEED people to help us sell 50/50 tickets during the 1st and 2nd periods and you can still sit in your seat to watch the exciting 3rd period and cheer for the Monsters!  Whether you're a committed hockey fan or you've never seen a game in your life, I promise you won't be disappointed.  

Thank you for reading. 💙

Wednesday, August 16, 2017

What Scares Me

Much of what you hear associated with any kind of diabetes diagnosis is the potential for horrific health events.  Heart disease, eye problems and of course the “shooting, burning pins and needles of diabetic nerve pain” that we hear about in TV commercials every day.  What scares me?  Maybe not the things you’d think.

My greatest fear is having a seizure due to low blood sugar.  If you knew me then or have since heard about my seizures after a head injury in high school you’ll likely understand why.  It hasn’t happened yet and many people with T1D go through their lifetime without getting hit by a seizure.    It’s my single most active concern above and beyond any other short term problems.  I hate reading stories about people with T1 experiencing low blood sugar seizures and I’m conscious of the risk nearly every time I go low.

Long term I naturally worry about all of the possibilities.  But the one I mention most frequently is amputation.  As hilarious as this sounds and as much as it makes me chuckle to talk about, this is no joke.  I have tiny feet.  Elf feet, as some friends refer to them.  I’ve seen what it looks like when someone with T1D loses their toes.  If I lose my toes my stumpy little feet will be practically useless.  I’m already lucky the little things are just big enough to operate a gas pedal.  If I lose my toes I’ll be in trouble! J

Am I afraid of dying?  Not death itself, I don’t think.  It’s coming one day whether I like it or not.  I’m afraid of dying before I’m done.  I’ve got a lot left to do and I’m nowhere near done yet.  So I’m sticking around.  What do I need to do to say I’m done?  Check with me in 40 years and I’ll let you know if I’m there yet.

Want to know what really scares me, far beyond anything T1 can throw at me?  Spiders.  There is no greater comedy than watching me jump out of my skin when one of those 8 legged monsters appears in my house.  They’re a much more urgent threat than anything diabetes can throw at me.  I’m independent, I’m strong…and I’m compelled to execute any spider that dares enter my house.  After my heart rate returns to something close to normal, anyway.

Suddenly I have this urge to order these fabulous slippers…with bells on!

Sunday, August 6, 2017

I Had a Day

A little before 8:00 on Friday night after a low glucose alarm on my CGM, I texted my friend “I am having a day” and she immediately responded “yes you are.”  Friday was one of those maddening T1 days where it felt like I couldn’t win. 

The fun started around 1 AM when I got my first low alarm of the night.  Low alarms happen when my continuous glucose monitor, the CGM, thinks my blood sugar is 55 or less.  When the alarm jolts me out of bed I head straight to the bathroom and check with a finger poke to confirm and decide what I need to do next, if anything.  The early hours of Friday morning were no fun at all, as you can see here:
  • 1:07 alarm, finger poke 75 and recalibrate the CGM to correct the reading.  Back to bed.
  • 1:26 alarm, finger poke 67 and eat 6 peanut butter M&Ms.  Recalibrate and go back to sleep.
  • 2:36 alarm, finger poke 71 and recalibrate before going back to bed.
  • 2:47 alarm, finger poke 67 and eat a glucose tab before recalibrating and heading back to bed.
After the fourth alarm my body and technology let me sleep through the rest of the night and I woke up at a perfectly healthy and reasonable 81.  Hooray!  Why was I dropping?  I don’t know.  Why was the CGM overreacting?  I don’t know that either, but if I was lying on top of it that could be a factor.  “Compression lows” are an actual thing and a major opportunity for improvement at Dexcom!

Unfortunately the overnight sleep disruptions weren’t the end of my adventures for the day.  You see, schedules and timing are a big part of keeping things level and my schedule changed on Friday afternoon.  Mid-afternoon I had some blueberries and blackberries along with a little insulin to cover the sugar in the berries.  No problem.  And then…my boss very generously sent us home early to get a head start on the weekend.  I happily headed out around 3:30 and went to the gym.  Why was that a problem?  I hit the gym with 2 units of insulin in my body and cardio makes your body more responsive to insulin.  Normally I would have left work at 5:00 or later, putting that insulin farther in my rear view window.  I was at 70 in the locker room and took a glucose tab before my workout – I’d also had half a protein bar in the car, so figured all would be good.  Wrong!

The low alarm went off while I was on the stationary bike, shortly after I’d thrown back another glucose tab.  I added a third tablet and then a fourth because although I didn’t feel low, I wanted to be safe.  I’m fighting shin splints and have been doing my cardio time on a bike instead of a treadmill this week – I’m learning, not quickly enough, that cycling impacts my sugar much faster than walking does.  I cut my time on the bike short and walked on a treadmill for a bit before calling it a day.  My finger poke in the locker room after 40 minutes of activity and 4 glucose tabs (16 carbs) was 130 at 5 PM.  What?  That’s higher than I like to be and I figured I was climbing, so I took 2 more units to cover where I was and where I suspected I was heading.

And…a little before 7:00 my low alarm went off again.  Ugh.  Another glucose tab, another “I’m not dead” text to my friend and I moved on with making a “fat head pizza” for dinner.  An hour later we got another low alarm and I sent my “I am having a day” text.  Another hour later, I ate a 5 carb tiny Milky Way for my final correction of the night.  Fortunately, that was the end of the madness.

I went to bed with my blood sugar at 127.  I took 1 unit to get that closer to 100, but didn’t go any further because I wanted to sleep through the night!  It was a day.  I never overcompensated and wound up crazy high, but I was a little too tight about avoiding the high and wound up spending much of my evening low as a result.  It’s a balancing act, and while things like random overnight madness and schedule changes are out of my control, being a touch too aggressive on keeping my numbers down is within my control.  Does knowing that mean I’ll never have that kind of day again?  Not a chance.  But every T1 “day” gives me a better shot next time. 

Friday, June 23, 2017

Why Me?

Why did I get Type 1 diabetes?  The short answer to what seems like an obvious question is that I have no idea.  It’s also not a question I’ve really asked with an eye toward understanding “why did this happen to me?”  That feels like something I would have been likely to ask my parents in tears and frustration if I’d been diagnosed as a kid.  As an adult it’s not something I wonder about, because I know Type 1 isn’t my fault, and “why did the universe do this to me” isn’t something I typically ponder.  The more common question and one I’ve been asked repeatedly is “how did this happen?”  What caused a seemingly healthy 42 year old woman with no family history of T1D to wind up with this disease?  The answer to that one isn’t as short, but I have a guess.

In the last few years I’ve heard 2 different speakers explain the belief that the biological changes that can eventually lead to a T1D diagnosis are present in the body as early as 2 or 3 years old.  If the right trigger comes along after that day, your immune system attacks the insulin producing beta cells in your pancreas.  That attack means it’s just a matter of time before you get handed your first insulin prescription.  Don’t encounter something that triggers the attack and you never hear about Type 1.  What are the triggers?  It can be a virus, some sort of toxin, or something yet unknown.  I’ll never know for sure what made my body decide it needed to kill those vital beta cells.

People who know my medical history in recent years have often had the same guess about what could have led to T1.  It’s an antibiotic called Avelox.  In 2010, I took one dose of that medication and it set off a body-wide chain reaction in what is called “Fluoroquinolone Toxicity Syndrome.”  Within an hour I lost feeling in my feet and hands and went to the ER where I was handed a new prescription for a “more appropriate” antibiotic to treat a cough.  I was also told the numbness and tingling could be addressed with Benadryl and would pass within days.  Instead the reaction spread and I developed muscle spasms, insomnia, tendonitis, anxiety…the list of symptoms covered me from head to toe.  A neurologist diagnosed me with MS, a rheumatologist diagnosed me with arthritis, and after MRIs, x-rays and more vials of blood than I can count, no doctor could explain what I was experiencing.  But they all assured me it was impossible for an antibiotic to cause my issues.  I found online communities full of people around the world having the same reactions, many of them so severe the people became disabled.  (If you want to learn more, “Certain Adverse Events” is an amazing film on the subject of these medications and the FDA approval process.  The stories are heartbreaking and infuriating.  Get it on YouTube or Amazon.)  The FDA has since added several “black box” warnings to this class of medications, including one warning that a single dose can cause permanent neuropathy – the symptom that I continued to have for years.  Is it unreasonable to think the damage the Avelox caused could have extended to my T1D diagnosis 4 years later?  I don’t think so.  I’ll never know and it doesn’t matter, but I believe the odds are good that the pharmaceutical industry led me here.  An antibiotic may have been the toxin that triggered a reaction that was hiding in my genes for 40 years. 

In other news, tomorrow is my third “diaversary.”  3 years since I was diagnosed with Type 1 Diabetes.  In ways my life is exactly the same today as it was that terrifying day.  At the same time I feel like everything in my life has changed.  Why did this happen to me?  I saw a video this week from Team NovoNordisk, a professional cycling team composed entirely from diabetics.  One of them said he got T1 “because it was my turn.”  That’s as good an answer as any.  Life happens.  This happened to my life, and I can either deal with it or die from it.  Maybe this happened because I can handle it.  Maybe because I needed a challenge, or maybe because the world needed another voice to stand up and educate people about Type 1.  Maybe it happened for no reason at all.  Whatever the reason or reasons, I’m celebrating another year of surviving.  I’ll celebrate each of these anniversaries until the researchers working on this disease find us a cure.  Then I’ll have an incredible new anniversary to celebrate.

I refilled most of my prescriptions this's the fully stocked "D cupboard" in my kitchen.  CGM sensors, protein bars and candy, needles, test strips, glucose, alcohol wipes...I could really use this space for kitchen things!