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 - The Emotions

                        

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.

• Unexpected positives
• The cost of diabetes
• Blame and judgment

Diabetes Blog Week - Judgment

                        

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!

• Day 1 was about unexpected positives.
• Day 2 was about the cost of diabetes.  

Diabetes Blog Week - Costs

                       

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.  

Diabetes Blog Week - Diabetes and The Unexpected

                        

This is the 8^th 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.