More Than You Think You Are

More Than Diabetes - Friday 5/19
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!  (This topic is a suggestion from the 2016 #DBlogWeek survey.)

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My very first passion was writing. So, naturally after diagnosis, someone suggested I start the blog. It felt natural to write about everything diabetes and mental health awareness. But, I forget that I'm more than that. 

Read between the lines. I usually have 3-5 books going at once. There is not once topic I will not read about, even though sci-fi and fantasy are not my favorites. Lately, it has been a mix of behavioral finance non-fiction, young adult fiction, and reading Shonda Rhymes' book. Reading is my favorite thing to do on a summer day, in the park.

Go sports! I may not be able to tell you the blood type of the short stop for the Brooklyn Dodgers in 1956, but I love watching Football, Baseball, College Basketball, Soccer, Hockey, and NASCAR. I'm a Chiefs Fan, A Royal's fan, a KU fan, a SKC and Man U fan, a Minnesota Wild Fan, and a Matt Kenseth/Denny Hamlin fan. What can I say? I like the underdogs (except KU. They are ROYALTY.) One of my bucket list items to see a game in every Major League Stadium and get a hot dog from each one. I've been to 9 ball parks. Looking forward to the rest!

Let's Ride! I love State Fairs. The best is obviously Minnesota. Followed by Texas. Then Oklahoma. There is something about crappy food, summer nights, and a ride on whatever rickety thing they put up in a day with a wrench holding it together. Plus, the people watching is GOLDEN. Another bucket list item: go to them all. I've been to Kansas, Oklahoma, Texas, Minnesota, New York, Ohio, Iowa, Kentucky, and New Mexico. 

I want to travel the world. I've been almost all over the United States. I've never been off the continent. My dreams are in Ireland, Costa Rica, South Africa, France, Germany, Thailand, and Australia. I love road trips incredibly, and snorkeling has been the most religious experience I've ever had. I was in the Bahamas and all of a sudden I was swimming in a school of manta rays. It was beautiful and I'll never forget it. Every time I go somewhere new, I finish my trip by watching the sunrise on my last day. It's surreal to see that much of natural beauty in the morning. 

"Too much of anything is bad, but too much good whiskey is barely enough." (Mark Twain) I love Woodford Reserve. But, I'll drink Jim Beam. I went through a brief Scotch phase. While I crave a good scotch while I'm writing or enjoying a rare cigar, I'm a bourbon girl through and through. 

Music to my ears. I am in love with live music. I'll see any band or singer at least once. My biggest accomplishment was the year of concerts. In 2013, I saw 44 shows and only spent $113 on concert tickets. I won all the rest. It was crazy. But, so much fun. If you haven't noticed yet, all of my blog posts are named after a song lyric. 

First Concert I ever attended by myself. Loved every bit of it.

I like to scream. Horror movies are fascinating to me. I watched A Nightmare on Elm Street when I was four years old and I have been hooked to horror and gore ever since. The best paper I ever wrote was a twelve page dissertation on how the monsters in horror movies reflect the monsters in society. From The Creature From the Black Lagoon to Scream, I broke down the movies and societal fears. Damn, I love that paper. I think only four pages were required and I couldn't stop. 

Die hard Liberal here. Don't let that offset you. I watched all of the debates with a gun-toting conservative. I have many friends on all sides of the political fence. I believe we need to keep these conversations open and be respectful of each other. I think it's the only way we get things done. I don't think what I believe is perfect. But, I will fight for it, along with your right to say what you believe - the only stipulation being that you can't hurt other people. 

My Type 3's. Damn, I'm lucky to have these people. Mom & Dad: Thanks for all you do and never letting me fail. Steph: thanks for the post it reminders and being my big sister. Staci: You always yearn to learn so much for me. Christine: My original Type 3 and my person, I love you big time. Mike: Thanks for always checking on me and knowing when I'm fading. Your EMT background helps tremendously. Brittany: Thank you so much for being my Diabetes when I need to yell at it and giving it a physical form. Last but not least, Amanda: You always challenge me to learn more and more. Plus, I appreciate the laughter when I hate my disease. 

I am a jack of all trades and have many passions. Even though I am the token diabetic to most of my non-PWD friends, I am so much more than just that. <3

In Disguises No One Knows

Click here for the Throwback Thursday: What Brings Me Down - Thursday 5/18 Link List
Today let’s revisit a prompt from 2014 - May is 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? (Thanks again to Scott for this 2014 topic.)

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Mental health seems to be a re-occurring theme in my blog. I was going to use the Blooper Post for today, but with the passing of Chris Cornell late last night, I feel like it's an important subject to touch on. 

Diabetes is never the same day to day. I'll be honest, most days I don't even notice it. But, when i am tired, or on the blood sugar roller coaster, stressed, worried about money, being cut off from health insurance, or when I'm sick, the mental stress of it comes to surface in a big hard way. It sucks.  

Sometimes, I just want to break down and cry. And sometimes, I do. I highly advise (for PWDs and Non-PWDs alike) to have a strong therapist around in days when you don't think you can make it. I also recommend lots of deep breaths, screaming, kicking, cuddling with pets, finding art you can do (mine is writing) to take the focus off, and relying on friends and family even when you think you are being a burden. You may not think they want to hear from you, but they much rather want that call than the call to find out you let the stress take your life. 

Forget diabetes for just a second. If you, or someone you know is having problems with mental health, get help now. It's never too early, nor is it ever too late. 

A friend of mine recently found his art is drawing, painting, charcoal, and all kinds of mediums I cannot begin to touch on. He made a card that says, "Take Care. You're the Only You We've Got." It sits next to my window and I see it every day. It reminds me that no matter what life throws at me, I have survived worse. 

If you cannot afford a counselor and you need help, please call 1-800-273-8255. You're too important to let the sad feelings take you out. 

Sure Would Like to Stay In Talladega

The Blame Game - Wednesday 5/17
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 judgement 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!  (Thank you, Brian, for inspiring this topic.)

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Let me give you a little background to my diagnosis. The REAL background. 

I was diagnosed as a Type 2 diabetic for over a year before they realized I was actually not producing any insulin at all. I had no insurance and was seeing a state doctor who would come in and talk to  me for less than five minutes and write a prescription for Metformin and, later, Victoza. He would look at me and look at the numbers I would come to him with, and say "Keep doing what you're doing." The one time he checked my A1c, he said the blood work was clearly off with a A1c of 14. It got up to 18 before I switched doctors. Enough with the history lesson, though.

I had some MAJOR agoraphobia going on. So much so that I quit my job, I was grocery shopping at one in the morning to avoid people, and I could not leave my apartment without looking at my front door for forty-five minutes before I convinced myself to leave. I missed live music (my absolute favorite thing to do,) I missed birthday celebrations, and I even missed a wedding. For all of you who don't know, I am an extreme extrovert and this made no sense for me. I clearly had something going on, but I had NO CLUE that it was diabetes related. I figured that if it was something was related to my physical diagnosis, my doctor would have caught it. I thought wrong. All of this was going on months way before my Type 2 label. I had tingling hands and feet, I had insatiable thirst, I had frequent bathroom breaks, and I had a number of lady problems-which I will spare you, because ewwww. 

The day after I was incorrectly diagnosed with Type 2, I had someone very close to me confront me. Keep in mind, I was stressed. I was afraid. My mental health was deteriorating every minute. I had no clue how to handle everything. This is how I remember the conversation going:

Me: As it turns out, they told me today I have Type 2 Diabetes.
Lady (I will keep her anonymity alive because I love her that much) : How did this happen?
Me: Maybe genetics. I don't really know that much about the disease.
Lady: Really? You can figure it out, I'm sure.
Me: I really can't. It's been a roller coaster these past few months.
Lady: Think about it. You eat like shit. You're not in control of anything. This makes sense to  me.
Me: But, I wasn't trying to do anything.
Lady: Exactly. You weren't trying not to, either.
Me: I'm just trying to survive.
Lady: Well, either you won't take care of yourself, or you can't. Which one is it?

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Keep in mind this is someone I love, to this day, very much. She is very black and white. She is very matter of fact. She would walk through fire for me. She absolutely had no idea what she was doing.

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Have you ever seen Jeff Dunham's comedy? He is a ventriloquist and I used to watch his stuff religiously. Although I don't any more, I have one DVD that reminds me that I can laugh occasionally at his stuff. Bubba J is a character of his that I cannot relate to. I grew up in suburbs where upper middle class was more prevalent than it wasn't. It took me until college to understand that not everyone was in my bubble. If you haven't seen Bubba J, I suggest you look at that link. Inspired by him, I write what I wish would have happened. Although, I'm guessing it would not be far off.

Me: As it turns out, they told me today I have Type 2 Diabetes.
Bubba J: I think der might be a Nascar driver with that sickness
Me: Well, it's not really a sickness. It's a disease.
Bubba J: A disease you can get from beer?
Me: No, Bubba J. It's a problem where you don't use your insulin correctly.
Bubba J: My cousin gave me a disease once.
Me: Whoa, I don't need to know that.
Bubba J: Too many beers, ya know. It happens to us all.
Me: But, I don't drink beer.  
Bubba J: Sucks to be you.
Me: Kind of right now. But, it's not good for me.
Bubba J: It's good for ev'ry one. It makes us forget.
Me: I don't want to forget.
Bubba J: Ewe should! I done love forgettin. Makes me not to remember.
Me: Get serious.
Bubba J: I am serious. And I knows I don't have the Section 2 you have. Your problems sound real.

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Hopefully you get the comedy of this. Even though, Diabetes, no matter which type, is no joke. I just wish I was talking to Bubba J that day.

How Much a Dollar Cost

The Cost of a Chronic Illness - Tuesday 5/16
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?  (This topic was inspired by suggestions from Rick and Jen.)


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$4,476: The amount of money I spent in insurance premiums last year. 
$713.72: The amount of money I spent in a new insulin pump and CGM (out of pocket) in 2016.
$1000: The amount I spent in doctor's deductibles for office visits.
$250: The amount I spent in lab work from January 1-December 31.
$50 (ish): The amount of money i spent in AA Batteries to keep my pump running.
$36: What I spend on glucose tabs, on average, annually.
$540: What I spend on Test Strips, on average, annually.
4.5 Days: The amount of days I missed of work last year, strictly relating to Diabetes.
3 times: The average amount of times I wake up during the week directly relating to Diabetes.
4 times: The amount of times I changed my lancet last year, and this is a liberal number.
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$7,065.72 spent on Diabetes, in 2016 alone, not counting the loss of sleep, the dull lancets, and the days missed of work.

Nothing went "wrong" last year. I had zero complications. No bouts of Diabetes Ketoacidosis, no hospital stays, and no big scares in lab work. So, 2016 was an "affordable year." You don't want to see the receipts from the years where complications do arise.

Money, strictly speaking, is a big complication in and of itself. I make a pretty good salary. AND I like my job. So, what happens if you don't make good money? Even if you have a college degree to do your job? (See: teacher, social worker, public service jobs, etc.) Money can prevent me from getting that extra lab work I need to check if I am still functioning where I need to be. Money often stops people from checking their blood sugar, affording insulin, getting their much needed treatments, getting health insurance, and seeing a doctor, even though that's what they desperately need. So how does that alone affect care?

In every way possible.

Days missed from work? I have PTO! How lucky I am! What about the single people trying to support themselves on an hourly wage where they can't miss a shift, but they are so sick and tired from the highs and lows? They are forced to go and participate in their job, even though it may not be safe for them to be there with their drained bodies and  minds.

Sleeping through the night? Forget it! If you have a low blood sugar, I hope you wake up to treat! If not, it could mean death. High blood sugar? Enjoy spending your nights in between your bed and the toilet to constantly urinate in hopes that you can get to REM in between. (Hint: NO CHANCE.) My favorite is when I'm low and I have a dream where I am at a buffet and I head to the sweets table. I can't tell you how many times I am having a lucid dream about the most delectable cupcake and I wake up sweating, just so I can crawl to the fridge to get juice because I forgot to refill a juice box or glucose tabs by my bed from the last low.

Lancets - for you non-PWDs- are the little sword inside the contraption you see us hold up to our fingers to test our blood sugar in times of highs, lows, meals, post meals, exercise, or just a general funny feeling. Lancets are infamously never changed except for a few exceptions: see Anthony Hightower, Daylight Savings Time, or a new lancing device. They get dull fairly quickly, but it's one of those things I can control cost on, so I go longer than I should. I used to change them every single time. Then, I realized, that's stupid for me. ***Please do not take my advice on this portion. It is is important for safety, sanitation, and your damn fingertips that these be changed every time.***

These are the physical costs. I'm not sure I have the energy to discuss the mental costs: including, but not limited to, exhaustion, worrying about EVERY LITTLE THING THAT COULD AND WOULD GO WRONG, anxiety, depression, the mind fuzziness from a low, the unbearable thirst from a high that you just can't seem to quench, the frustration from not being able to predict what the next day, hour, or minute will look like, or just the mindset of "I don't give a flying f**k" when you've done everything you possibly can. These are what is most costly to me.

Do I have advice to get through it? Nope. You just do.

Sometimes with flying colors.

Sometimes barely clenching on, with your finger nails, in a hail storm, on the side of a muddy cliff.

So how much does diabetes truly cost? Everything.

Everyday is a Winding Road

Diabetes and The Unexpected - Monday 5/15
Diabetes can sometimes seem to play by a rule book 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?  

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I could give you lots of tips on what to do with diabetes and how to deal with the unexpected roller coaster it always seems to be. However, it would all start and end with a lot of swearing. I don't have all of those answers. What I do have is a ton of GREAT stuff that has happened to me because of this disease.

How could this be, you ask? How could the girl who is bogged down and complaining about this crappy 24 hour a day/365 days a year autoimmune disease possible find a good thing about it? I know. The feelings, both physical and emotional are stupid. The constant exhaustion wears on me every moment and I am ready to pass this off to [almost] any one who would take it. I ABSOLUTELY hate the money that is associated with it. I am constantly worried about health insurance. I worry about keeping my eyesight, my feet, my kidneys, my heart, and my mind. But, it's not all bad. Here are the highlights:

1. The passion. Sure, I've always loved dogs. I really enjoy writing. Books and movies take me to a different place that I am glad to go. But, diabetes gives me a constant fight to make the world a better place. I am not looking for better treatments, I am looking for a damn cure. If they find it (and I don't believe they will because I am both a pessimist and I can find a millions reasons why they won't find it,) I will have to find something else to fight for. Hopefully it won't be something equally as afflicting. I'll need something to write about, vote for, scream on social media over, write to my government about, and vent about to anyone and everyone who will listen. For now, diabetes gives me this. 

2. The money. Diabetes gave me a reason to watch my pennies. Long before I was in the financial industry, diabetes helped me re-focus on what was really worth spending my money on. Was I going to spend it on a really nice dinner out, or should I save it for the insulin to get me through an extra week? Hmmmm. Hard choice? Not one bit. Someone told me once that it is easier to save a dollar than make one, and I knew that I had to save it to be able to afford to live. Morbid? Sure. But, I made it happen.

3. The community. Do I need to thank the Diabetes Online Community? Not to the extent I normally would. Y'all know how valuable you are because you value each and everyone of us every day. I can get answers in the quick typing of a keyboard, and (with the exception of a few unmentioned trolls) you have my best interest at heart, as individuals and as a whole.

4. The people. This is a smaller collection of people. You all know who you are in the DOC because we go through the sharing, the anxiety, the worries, the laughter, the love, the tequila and bourbon, the supply exchange, and "OH MY GOD YOU'RE GOING TO THAT CONFERENCE, TOO!?" together. I love you people because you are my tribe.

5. The networking. Ever heard of KC YLC? Look us up. We are a young professionals group dedicated to raising money for JDRF. If you live in the KC area, check out Sunset Music Festival, a free music concert at Town Center, every Thursday night in June. All proceeds go to JDRF. I'm on the board and will be at every concert. You can find us on Facebook shamelessly plugging our event. 

6. The food. I value good food better than ever before because it takes thought of what I should and shouldn't put into my body. More importantly, what is worth the insulin.

7. The faith. I never had faith in myself before. I battled some pretty serious mental illness for a long time. I didn't realize what I was worth until I was faced with something so much bigger than me. I lucked out. Even when I want to give up, I don't. I have more faith in myself than ever before because I am deciding to live every day - no matter which obstacles I face. I will be forever grateful. 

Diabetes is no walk in the park. In fact, usually it's one big trudge through the swamp. But, there have been some completely unexpected fantastic sides to it. It may be a club that I never wanted to be a part of, but, I'm lucky to have the membership perks along the way. 

Won't you please, please help me.

Today, the day the House of Representatives made their vote to repeal and replace Obamacare, I woke up. I was lucky.

Today, the day the House of Representatives made their vote, I checked my phone like normal. My sister made a post about contacting your House Rep and encouraged them to vote not to repeal the law that changed 24 million Americans lives. Her post brought me to tears. Mostly because it did not just change my life, it changed so many lives of people I know. I got up, I shared the post, and I brushed my teeth.

Today, the day the House of Representatives made their vote, I checked my blood glucose level to eat  my breakfast; like I do every morning. I entered my carbohydrates into my pump and I wished for the best. Every day, it's different. I eat the same thing every morning for breakfast, but it changes every day depending on how I worked out the day before, how I slept the night before, how the weather changes, and how my stress levels are. You see, it's an up and down decision and I cannot predict how it works out.

Today, the day the House of Representatives made their vote, I emailed my representative (Kevin Yoder, KS) to beg him to not approve the repeal. He did not respond. He voted to repeal and replace with a less effective result, that would affect many people in the state he represents.

Today, the day the House of Representatives made their vote, I went low 90 minutes after I had breakfast. Yesterday, I was high. I did the same thing today I did the day before, but the results were different. You see, your diabetes may differ from mine. Hell, my diabetes differs from mine. Every dang day.

Today, the day the House of Representatives made their vote, I checked my blood sugar 13 times. I was on top of it because I had the strength, the test strips, the technology, and the willpower to see my blood 13 times. I am not as strong, or as fortunate, as I was today.

Today, the day the House of Representatives made their vote, I contacted my pump company to order more supplies. Could I immediately get them? No. They had to send a request to my endocrinologist for a prescription refill to be able to fill such an order. Then, they had to take my bank account number to make sure that I could pay for it, without insurance that will cover my refills, before they would even consider sending me refills. Response: To Be Determined.

Today, the day the House of Representatives made their vote, I made my pump supplies stretch. I am making sure I can make it through to make sure about refill can be filled. This could come with further complications, including, but not limited to, infection, blood clots, bruising, less responsive results, and insulin resistance.

Today, the day the House of Representatives made their vote, I cried when the results came in that I would have to wait on the Senate to possibly disagree with their vote. I went to clean up myself (at my work place no less,) in the restroom and watched as my mascara ran down my face. I saw my wrinkles growing colder and older as I looked at myself and wondered how much longer I could afford to be at one job, wear makeup, and, much worse, afford to live with my medicine I so desperately need. I stared at the girl in mirror and asked, if I could be so strong, would everyone else?

Today, the day the House of Representatives made their vote, I heard a conversation about how sick this vote was making them; even though they were two able bodied people without health issues, and enough financial freedom to take care of themselves. They are very sympathetic, but they can't possible have the empathy-even though they are two of the most empathetic people I know.

Today, the day the House of Representatives made their vote, I ate dinner and considered it based on what I could afford in carbs versus insulin ratio. When was the last time you had to do that? Honestly? When did you have to figure out what you could eat based on what your long term complications could be? A lot of my dear friends do it EVERY DAY.

Today, the day the House of Representatives made their vote, I was tagged in a post by an amazing friend with Crohn's disease who fights to take care of herself and her baby every day. She has one on the way and thinks about it every minute, of every day, of how her digestive track will handle when baby number two comes. She was basically disabled after baby number one, and worries it will come after baby number two.

Today, the day the House of Representatives made their vote, I watch 'Girl Interrupted' and wonder about pre-existing mental conditions that affect so many. People that are trying to get help. People that are fighting the stigma. People that aren't afraid to stand up, even at their weakest, and say, "I deserve help, too." Even though it could count against them in the long run.

Today, the day the House of Representatives made their vote, I go to bed wondering if I will have 'Dead in Bed' syndrome. Look it up. It's scary. And I go to bed, almost every night, worried about it.

Today, the day the House of Representatives made their vote, I called my Senator, knowing he is completely against ACA and wants to repeal it.

Today, the day the House of Representatives made their vote, I beg that people know that 24 million Americans are at risk. Plus all the ones that can't afford to get help, whether it be mental or physical health.

Today, the day the House of Representatives made their vote, And you are perfectly healthy. I was, too. But, I am also a Type 1 diabetic now. I have more on the line than ever before.

Today, the day the House of Representatives made their vote, You have an option. Contact your senators and make sure this doesn't pass. Make phone calls. Send e-mails. Picket. Speak Up.

Today, the day the House of Representatives made their vote, you're the only hope I have.

https://www.senate.gov/senators/contact/

Thank You Mr. President

Last night, I watched President Obama's farewell speech. Cue the water works.

But, It wasn't just that. It was more. It reminded me that we live in a great place. In the last four years, LGBT people have earned marriage rights. (And I am hopeful that some day they will be expanded to be all inclusive with LGBTQIA.) This should keep developing in our nation.

I was reminded that our unemployment is down further than it ever has been before, and our economy is booming. This should keep driving our economy.

I remembered, as I do EVERY DAMN DAY that 20 million Americans now have health insurance, where they could not before. These people are blessed. We may not always be, but we always should be. If this gets repealed, I may have to choose between insulin, good food, pump supplies, test strips, and many other life saving materials I use every day.

I was reminded that a family with grace, beauty, elegance, and love came into this administration and took it by storm, like none other has before them. They are beautiful. I saw him speak to his best friend, vice president, and now brother in a way that makes me thankful for the friendships I have like that. All human relationships should be like this.

And, I listened to him thank all of us, knowing this was not one man's job. He gave us all credit and encouraged us to work together, be strong, and fight for democracy. Because of this, I will always be thankful for these years. This is how it always should be.

Some of those years have been incredibly hard for me. In 2010, I was misdiagnosed and it could have taken my kidneys and my life. In 2011, I was correctly diagnosed-in a shocking year that should have ended in death for me with a misdiagnosis like that for that long. In the past year, I have had one of the toughest ever-not because my candidate lost, or because celebrities died, or because the news is scary. It's been a tough year of personal decisions and I had the toughest break up with a man I love very much. This year has affected my eating patterns, and my stress levels to a whole new degree. I'm recovering, but it's been pretty shitty.

But, what I know from watching that Farewell Speech is that we have people that fight for all of us. And, if we can stick together and fight for our democracy, we will do good things.

Thanks, Obama.