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!

Monday, June 12, 2017

We Did That!

I’m not athletic.  I know, that statement isn’t a surprise to anyone who’s known me in the last 30 years.  10 year old softball Dana would probably be pretty disappointed at this discovery, but 45 year old me is OK with it. Why does it matter that I’m not an athlete?  Because this post is about putting a bow on finishing my 3rd half marathon.  Like a lot of people I have an image in my head of someone who does long distance races, and I’ve never looked like that person.  I do it anyway.

After this year’s race we made a list of the highlights from our experience.  The first one wasn’t actually on that list, which is one of the coolest things about me writing it down – my Type 1 was a non-factor.  This is the first race we’ve done since I got my CGM, so we had no need to worry about stopping to check my sugar.  The end result of that is that neither of us really thought about me.  Every now and then I’d look at my watch to check my digit and that was all.  I wasn’t high, so I didn’t need insulin.  I wasn’t low, so I was safe.  The focus was on the race, on getting through 13.1, and on our shared achievement.  That’s exactly how it should be.

The race itself was an adventure and another unique experience.  We saw a woman running barefoot right from the start, and firefighters running in full gear.  We interacted with more walkers than we’ve ever seen before, and shared an experience with several of them when a total psycho thought he could ignore barrels and cones to drive down the course that we were all racing on.  Three times.  We had several full marathon runners near the end of the race come up behind us and shout encouragement…when they’d already run about 25 miles in the time we went 12.  As we have every year, we found the fans in Tremont handing out little cups of beers to the racers.  5 miles was a long time to wait for that sample!  We got an incredible laugh at a fan wearing only a royal  blue Speedo and a smile while he lifted a sign that said “Shut Up, Legs” somewhere in the 10-11 mile area.  We found a water stop volunteer with a pitcher who refilled my friend’s backpack with water, a helping hand without which we wouldn’t have made it to the end.  We went past a random fan offering up a bowl full of ice cubes to cool us off as we went by, and another volunteer offering to hose people down.  And we enjoyed the most supportive crowds of the 3 years we’ve done this race.  Cleveland came out in force for the 40th annual marathon, and that helped us too.

We finished in pouring rain, and very few drinks have tasted as good as the free beer we collected at the end and drank huddled under a mostly useless tree.  This is hard, and we haven’t had a race that didn’t present its own list of challenges.  We didn’t hit our time goal, finishing 4 minutes behind last year’s pace.  But we finished, and there were a few times that we both doubted whether we’d make it that far.  We’re not athletes, but we finished and we finished strong.  Next year we’ll still be aiming to finish in less than 3:30, and I wouldn’t bet against us.  

Friday, May 19, 2017

Diabetes Blog Week - There's More Than Diabetes

Blog week day 5!  When I signed up I wasn’t sure I could put together 5 coherent posts over the course of little more than a week.  I don’t know if they’ve been completely coherent, but there have been 5 and I’m pretty happy with them.  Thanks for reading, I hope you’ve enjoyed them and maybe even learned something.  I’m already looking forward to next year!

The final topic for this year:

Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with.  Share an interest, hobby, passion, something that is YOU.  If you want to explore how it relates to or helps with diabetes you can.   Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes! 

I’m a lot of things beyond a Type 1 Diabetic.  I’m a daughter, a sister, an aunt and a friend.  I’m an analyst and a mentor.  I’m a crazy screaming fan of the Detroit Red Wings and Tigers, the Cleveland Monsters, and I proudly call myself a Michigan Wolverine.  Go Blue!  I’m a passionate advocate of a low carb way of eating (with or without D) and I’m an increasingly passionate Type 1 Diabetes advocate.  And this weekend, for the third time I’m a half marathon walker.

In 2014 a friend and I walked our first half.  She was roughly 7 months removed from finishing treatment and earning the title of “breast cancer survivor.”  We were completely unprepared and made it through the race only because we were too stubborn to fail.  Shortly before that race I was diagnosed with Type 2 Diabetes.  Soon after the race that diagnosis was corrected to Type 1 Diabetes and I started my journey through chronic illness and insulin dependence.

Last spring we walked our second half.  For the first time we carried insulin, needles, test strips and a glucose meter.  The weather that day included all 4 seasons:  we had rain, sleet, hail, snow and sun.  We also improved our initial result by an inconceivable 38 minutes!  I was so emotional about our time and completing my first race with T1 that it was all I could do not to let out a sob as we approached the finish.  Not from sadness, but from relief and joy and pain.  At the first race we were grinning like maniacs at the finish; last year I was grimacing and trying to smile with tears running down my face, a confluence of truly confusing emotions.  It was so cold all morning that I still couldn’t feel my hands when they took this picture after the finish.  The tears were gone, though!

This Sunday we’re walking our third half marathon.  I wouldn’t say we’re completely unprepared, but we’re not where we’d like to be.  We haven’t been as prepared as we want to be yet.  But we’re strong and we’re stubborn and we know now that we can make it through 13.1 miles.  This time we’ll have the advantage of a CGM sending my glucose readings to a Pebble watch on my wrist so that we’ll know at every minute how my sugar is doing.  And we’ll have the incredible benefit of having survived this experience twice.  Two times isn’t a fluke, so short of some unspeakable accident we’ll complete race number 3 in just 2 days.  I’d be doing this with or without T1D.  But doing it this way adds a degree of difficulty and makes the achievement that much greater.   It’s part of my fight and part of my daily victory over this disease.  No matter how much it hurts, this time I’ll be smiling again at the end because we’ll both have earned it together.  

Last year we walked in honor of, and as fundraisers for JDRF.  This year we’re walking for Make-A-Wish in honor of a Princess Warrior named Paige.  

Want to learn about the other bloggers who participated this week?  Find all of the links here.

Wondering what you’ve missed in my blog?  The links are below:

·         Day 1:  The unexpected positives
·         Day 2:  The cost of a chronic illness
·         Day 3:  Blame and judgment
·         Day 4:  Mental health and the emotions of T1D

                              Diabetes Blog Week   

Thursday, May 18, 2017

Diabetes Blog Week - The Emotions

                        Diabetes Blog Week

It’s day 4 and blog week is almost over.  Thanks for reading!  Today’s topic is about mental health and the emotional impact of diabetes:

Today let’s revisit a prompt from 2014 -  Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? 

My emotions around T1 have evolved since I was diagnosed 3 years ago.  Until around this time last year my reactions could be intense.  Highs and lows, especially sudden extreme lows, made me crazy.  I was angry, in tears and saying “I hate this!” when things didn’t go the way I wanted.  Somewhere last spring that changed.  It wasn’t a conscious decision or something I was aware of when it happened.  As months went by I just realized I wasn’t having that kind of reaction anymore.   Why?  I’m not entirely sure. 

What do I think?  Largely that I’ve acclimated to life with Type 1.  The shock has worn off, I’ve made adjustments over days and months to how I manage my disease, and it’s just gotten easier.  Not easy, but easier.  Acceptance took some time, but here I am.  Now when I hear someone describe T1 as “a nightmare” I’m inclined to feel like maybe they’re overstating things.  Not that this isn’t a dangerous, scary full time disease – it is and I certainly never forget that.  But it’s doable and something I’m thriving with. 

That said, I worry even more over time about the reactions and emotions of the people who love me.  My “people” hate it whenever I mention that I recently read about another death in the T1 community.  While this is my reality it’s a shock to people like my parents to be reminded that this could all end in a way that none of us want to see.  A friend who is a breast cancer survivor has pointed out several times that illness is often harder on everyone else than it is on the person who is sick.  I think we’ve reached that point in my T1 experience.  I’m good with it, while the people who love me continue to be shocked and scared by the possibilities.  I only wish I could make it easier for them, and hope that reading my blog and seeing me do well with T1D and with the rest of my life help a little bit.  This helps me, too.  Blogging isn’t only about helping other people understand my disease; telling my story is a kind of therapy for me.

Does all of this mean I’m always 100% thrilled and happy with my T1 life?  Not at all.  I get burned out sometimes with the constant management and the ever-present reminders about T1.   Something as small as giving myself a shot can bring an “ugh” just because there are so very many of them every day and I'd really like to be done with this.  Like most people with T1 I’ve been known to “rage bolus” when my sugar refuses to come down for no reason.  That always lets me extend my frustration when my sugar later comes crashing down as a result.  Sometimes on the weekend when I’m spending several hours in the kitchen cooking the week’s meals, I’m jealous of the friends I know are relaxing and enjoying the time off.  It can approach bitterness once in a while, I won’t deny that.  But I make the choice to do it, too.  So I remind myself that it’s a decision I’m making for me, and that helps.  You always hear that happiness is a choice.  I didn’t choose to get Type 1, and if I got to vote I’d give it back in a millisecond.  But I can also choose to be happy and diabetic at the same time.  Anything else wouldn’t really work for me.

Some great diabetes bloggers from around the world share their thoughts on mental health here.

Are you coming late to my blog party this week?  Find the first 3 posts below.

Wednesday, May 17, 2017

Diabetes Blog Week - Judgment

                        Diabetes Blog Week

Blog week day 3 has arrived.  Thanks for sticking with me, and if this is your first visit thanks for stopping by!  Today’s topic is about judgment. 

Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgment from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!

I don’t get much negativity from my endocrinologist, because he sees my A1c and my CGM trend and can’t argue with the results.  We disagree profoundly on the subject of statins, but that conversation is fortunately brief each time I see him.  So instead I’m going to talk about some of the things other people have said to me since I was diagnosed.  There are several:
  • You don’t look diabetic.
  • You can’t/shouldn’t eat that.
  • You got diabetes because you ate…
  • Are you sure you don’t just have severe Type 2?
  • I read an article about diabetes and it said you should/shouldn’t…

Most of these are more silly to me than anything else.  They’re all based on ignorance, not anything remotely malicious.  Yet they can be hurtful.  In a very short time I’ve become an expert in an auto-immune disease I never knew a thing about until 3 years ago.  While it’s relatively new to me too, I’ve become expert in how my body reacts to most of the things I eat and do.  You, whoever you are and however well you know me or how well intentioned you are, do not know as much as I know.

What do I want to hear?  I want you to ask.  Whatever the question is, ask me and I’ll be happy to talk.  One thing I’ll never be offended by is curiosity.  The thing that makes me craziest is some variation of “you aren’t supposed to eat that” or “you can’t have that.”  I have a friend who periodically slips on the food subject, and virtually ducks each time anticipating the very quick reminder that I’m going to eat what I choose to eat.  I know what I can do, I know what I choose to do, and I willfully make exceptions to my own rules on occasion.  But I will happily respond to “I know you don’t normally eat that, how does/will it affect you?”  I’m also good with “I just read an article about diabetes, does this relate to you at all?”  Assumptions don’t go well.  Make it a conversation, and I’ll give you as much or as little detail as you want to hear.  Just talk to me.  

See what the other 80+ bloggers are saying about this topic here.

Did you miss my earlier posts this week?  Check them out below!

Tuesday, May 16, 2017

Diabetes Blog Week - Costs

                       Diabetes Blog Week

Welcome to day 2 of Diabetes Blog Week 2017.  With all the discussion currently and over the last several years about health care in the US, it’s no surprise one of this week’s topics is about cost:

Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?

First I’ll say that I’m incredibly fortunate to work for a large US company where I have great health insurance.  Of course, great insurance doesn’t mean free health care.  So when I saw this blog topic, the question I wondered about was how much did medical care for my T1 cost last year?  I looked up the costs for my prescriptions, CGM and appointments for 2016, including only the diabetes specific costs.  The total spend combining what I paid and what my insurance paid was almost $15,000.  Shocked?  I was.  I’m actually a healthy person.  But…I need life support.

Most of that cost doesn’t come out of my bank account because of the coverage I have.  The most expensive individual thing in my world was a surprise to me – it’s the Dexcom CGM – including a receiver, transmitters and the sensors that I insert under my skin to read my glucose.  Is that an absolute necessity to stay alive?  No.  But given that my A1c is at an all time low of 5.1% I’d say that it’s a pretty significant part of the package that keeps me healthy today and for a long time to come.

The most ridiculous cost on the list didn’t surprise me at all.  I don’t pay for test strips under my insurance.  But the cost for those was over $3k last year.  If I bought them retail it would be even higher – CVS charges $1.43 per strip without a prescription.  Many insurance plans severely restrict the number of test strips they cover each month.  But the catch is that one of the keys to managing T1 is knowing your blood glucose so that you can address it quickly.  Without test strips and with no CGM, that is impossible.  If you’ve ever seen a sign on the side of the road advertising “diabetes supplies,” now you know why.  People are desperate to get them at a reasonable cost…and other diabetics are looking for cash to get what they need to stay alive.  Look around and you’ll see them, those signs at intersections and freeway exists.  Sometimes they’re as clear as to say “test strips,” I saw one just last week on my way home from work.  Though I admit I never saw them before I needed them!

I don’t want to make this political, so I’m not going to dive into questions about the ACA, AHCA or whatever else we might eventually wind up with in the US.  But I’ll say this much – insulin isn’t a medication I take to be healthier than I would be without it.  I don’t take it to cure a disease.  I take it over and over again, day after day, because it is keeping me alive.  Alive and HEALTHY.  But because I need that insulin, I have one heck of a pre-existing condition.  And because most pharmaceuticals in this country are insanely expensive, I’m a pricey patient.  I said up front that I’m incredibly fortunate to have the coverage that I do.  But as much as I’m not afraid of Type 1, I’m afraid of what cost I might eventually have to bear to stick around.  It’s a steep cost financially, but an equally or greater cost emotionally to consider.  And that’s coming from one of the lucky ones.

Interested in what other people are saying about this topic?  Check out their blogs here.

If you missed my post from day 1 about the unexpected benefits of diabetes, get caught up here.  

Monday, May 15, 2017

Diabetes Blog Week - Diabetes and The Unexpected

                        Diabetes Blog Week

This is the 8th annual Diabetes Blog Week, and my first.  Until now my topics have always come from my distracted mind or from conversations with friends that spark ideas.  I’m intrigued by the idea of writing on topics that I may not have thought of, or putting a different spin on things I think about every day.  We’ll see how it all works out!  Want to see what other bloggers are saying about today's topic?  Find their links here.

Today’s topic:

Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected? 

I tend to be somewhat anal retentive and a little obsessive compulsive about planning, so being prepared for every situation is something I focus on.  So instead I’m going to talk about the good things that have come about because of my Type 1 diagnosis.  These are all unexpected outcomes for me and great developments.  I’m not done, but I certainly wonder what’s yet to come.
The first and most obvious thing T1 brought into my life was this blog and the desire to tell my story.  When I was first diagnosed I didn’t  want anyone to know and worked pretty hard to hide being diabetic.  Over the last 3 years I’ve gone from not telling people to screaming it publicly on the internet.  That’s a healthy change – I’m still keeping it pretty quiet at work, but I feel a change coming there too.

Why?  Because I’m finding my voice, a voice I didn’t realize I didn’t have.  Part of this is undoubtedly due to my advancing age, I’m sure.  I worry a lot less about what people think, and when it comes to T1 I worry less about it with every passing day.  With that, being honest about my disease and its realities becomes more important.  It makes telling my story important, and is helping bring me more out of the shy shell I’ve lived in since I was a kid.  OK, so it took me over 40 years.  But at least it’s happening!

The last unexpected positive takes me in a different direction, and is as personal as it gets for me.  When I was diagnosed I wasn’t just freaked out, I was scared about how my parents would react.  I actually tried to figure out how I could avoid telling them altogether, which I realize now would have been completely impossible.  Initially, we didn’t talk about diabetes much; I live a state away, we see each other maybe 4 or 5 times a year, and it wasn’t consuming as much time and effort at the start as it does now.  But as time has passed, things have progressed.  I need more insulin as my body has pretty much completely stopped producing any, I’ve added a CGM and started a blog, and all of those contribute to much more discussion.  That’s true with everyone, with both of my parents, my sister and my friends.  But it is most noticeable and significant in how conversations have changed with my dad.  He asks more questions now than he did originally, and we talk a lot more about how I manage T1 and what I do and don’t struggle with.  We talk about my health and his health and have conversations we never had before.  And of all the unexpected positives that could have come out of being diagnosed with a lousy chronic disease none of us ever wanted to know about, that’s one heck of an amazing gift.  Thanks, Dad.  I love you.