You Are Not Alone

I bought (downloaded) a new album from the band Motion City Soundtrack and have just gotten around to really listening to the songs.  I've been a fan for a long time and love all of their music.  It's upbeat, nerdy, and well written.  On this album there is one song that really hit home and came at the perfect time for me.  It's called "It's A Pleasure To Meet You"

You are not alone
We've all had our battles with darkness and shadows
I'm here to let you know
It's a pleasure to meet you

Can you feel it, disappearing
It'll happen, you are not alone
I've been there, I'm still there
Oh, and better

Everything is so damn tragic
Time erodes the waves of panic
Take it in

You are not alone
We've all had our battles with darkness and shadows
I'm here to let you know
It's a pleasure to meet you
Today is all we have
So try for a moment to break from the torment
And sing this to yourself
It's a pleasure to meet you

At a distance
There's a difference
Things will make sense
You are not alone
Got to hold on for the moment
Til the next one

Everything is so damn tragic
Time erodes the waves of panic
Get up

You are not alone
We've all had our battles with darkness and shadows
I'm here to let you know
It's a pleasure to meet you
Today is all we have
So try for a moment to break from the torment
And sing this to yourself
It's a pleasure to meet you

Every damn night for years of my life
I've spent driving around this miserable city
Just looking through windows at people
Alone for an answer or reason to live
But every day since, I've been peeling away
At this counterfeit skin just got in the way
I can see my reflection and clearly can say
It's a pleasure to meet you again

You are not alone
We've all had our battles with darkness and shadows
I'm here to let you know
It's a pleasure to meet you
Today is all we have
So try for a moment to break from the torment
And sing this to yourself
It's a pleasure to meet you

It's a pleasure to meet you
It's a pleasure to meet you

I've been struggling lately, which is no secret, and having been back at work for a few days it's been rough, but it's always good to have a reminder that I'm not alone.  There are tons of people out there battling everyday, some fighting the same battle as me, some fighting their own, but none of us are alone.

It's Been A While

This post has been sitting in my drafts for about 2 weeks.  It's something I've needed to address but have been hesitant to post.  I've read it over, almost changed stuff, almost deleted stuff, but in the end I wanted it to be raw and unedited.  I have grown too good at saying it's ok, or editing my thoughts and feelings to make people and even myself believe that everything is fine when in reality there is a whirlwind going on inside my head.  

It's been a while since I have been even looked at my blog.  It's been a while since I looked at anyone else's blog.  My Feedly list is backed up and overflowing.  Just thinking about trying to weed through gives me the beginning of a panic attack.  It's been a while since I participated in a DOC Twitter chat.  It's been a while since I've done much of anything diabetes related other than do just enough to keep myself alive.  That may be a bit of an exaggeration.  In truth, I've probably done enough to keep my A1c right around 8 area that it's been.  And for right now I'm OK with that.  I've been riding a roller coaster mentally for a while.  I've been telling myself that it's not that big of a deal.  That it's temporary.  I tell myself I'll get through it on my own, it will just take a little bit of time.  I was telling myself that until I was confronted with it at work last week and forced to take a good look at it.  Cornered and made to spill the beans about what is going on in my head to people that I had no desire to have those kinds of conversations with.  Forced to admit some things to myself that I haven't wanted to.
   
    My mental state has been causing some problems off and on with work for the better part of this year.  Depression makes the simplest tasks, such as getting out of bed, seem daunting and impossible.  When I do get out of bed, as I get ready for the day the worries and the fear and the dread mount up inside me.  The more I worry the more I feel like I can't face the day and the bigger the mountain to climb becomes.

      "What if I damage someone's vehicle at work because my mind isn't there?"
      "What if I reach my breaking point and lose it in front of everyone?"
      "What if all these people find out how I really feel?"

    None of these are really that big of a deal but in that moment they feel like they could be the end of the world.  Add that to all the things I'm already worrying about:
     
      "What if I have a really bad low while I'm at home with my 4 year old?"
      "What if I'm not a good enough father to my kids?"
      "What if we can't afford to pay for my insulin this month?"
     
    I am really good at saying "Nothing" or "I'm fine" when asked how I'm feeling.  Even if its the person I love the most, the doctor I'm supposed to tell the truth so she can prescribe the right medicine, or the therapist I'm supposed to let in so she can help me feel better.  Taking down the wall and exposing how I am really feeling is very difficult.  I feel weak and I'm afraid to show that.  I'm supposed to have the answers but I often don't.  I'm supposed to be a support system for the people I love but I don't even feel capable of supporting myself at times.  I'm 30 years old but sometimes I still feel like a feeble child, afraid of going out into the world. 

iLet

One of the most interesting and exciting things I saw last weekend at DTreat was the Skype presentation by Scott Scolnick from Go Bionic.  Fresh off the introduction of the iLet at FFL we got a sneak peek at the new device as well.  I'm a bit of a geek and very seldom do I get to feel like I'm seeing new things as they are breaking, so it was very cool for me.  I have to admit that I haven't followed any of the artificial pancreas stuff to closely.  I know its out there, I have read peoples experiences and been jealous, but I don't really know the difference from one to the next.  And I was pretty surprised by how close to market the team at Go Bionic seems to be.  They are awaiting FDA approval for their trial and are hoping to have approval by 2018!

I first wanted to share a couple of things from the trials that have already been done.  The thing that stands out the most to me, more than the change in average blood sugars and highs, is the dramatic change in time spent with blood sugars below 60.  That is a huge deal that I don't think most people think about.  In the outpatient trial from 2013, in 20 adults over 21, the mean blood glucose of participants went 159 to 133.  In the control arm participants had blood glucose below 60 3.7% of the time and over 180 34% of the time.  Those on the bionic pancreas dropped to 1.5% of the time below 60 and 16% over 180.  In the next trial in 2014 the control arm showed a mean blood glucose average of 162 with 1.9% of the time spent under 60 and 20% over 180.  While those using the bionic pancreas had a mean blood glucose average of 141 with .6% of the time being under 60 and 20% over 180.  While the average blood glucose averages don't show a huge drop, the control that participants saw, with time spent between 60 and 180, was pretty outstanding.  A1c's on the bionic pancreas averaged below 7, the goal for people with Type 1.

The information was great, but the most exciting part was seeing the prototype of the iLet!  While we didn't get to see a live model or anything like that, getting to see what it was all about was enough.

Introducing the iLet!

I was furiously trying to write down notes all the way through the presentation but had troubles keeping up at times so some of my info may incomplete but here is what I've got.  The previous trials for Go Bionic have consisted of 4 parts.  A Dexcom CGM receiver to track blood glucose levels, 2 Tandem pumps to supply insulin and glucagon, and an iPhone to put numbers through the algorithm.  Not exactly ideal for real world application.  The new prototype is one standalone unit to do all of these things.  It takes two pen cartridges, one with insulin and one with glucagon, receives data from a Dexcom CGM transmitter and has all the information to run the algorithm on board.  The touchscreen interface can display bg levels, insulin micro boluses, and glucagon micro boluses.  There are screens to show the life of the Dexcom sensor, infusion sets, battery life, and cartridge levels.  Users have the option of pre-bolusing for meals.  The iLet will give 75% of the amount of needed insulin up front and then monitor and adjust from there.  The system is always using previous information to determine needs based on meal, time of day, carb counts, etc.  The more information that goes into the algorithm, the more it can learn and adjust.  The system learns over time and adapts to the user.  All that is needed to start is the users body weight.  The iLet will also come with a bluetooth enabled meter that communicates with the receiver for calibrating the CGM as well as entering blood sugars if the sensor is not active, for example during the two hour warm up period. This eliminates the chance of incorrectly entering a blood glucose value. The system can still be used without a sensor, it just tends to let averages run a little higher and will not administer glucagon.  During those times the user can use the carb count entry menu and the bluetooth meter.  Another new feature is the G-Burst.  This allows a burst of glucagon to raise blood sugars before disconnecting from the iLet.  

Of course the iLet is only as good as the accuracy and performance of its individual parts.  We are still waiting on a more stable form of glucagon, CGM and meter accuracy can always be better, and currently insulin with a fast acting time would be ideal.  The Go Bionic team is working with three companies who are developing new glucagon formulas, one of which is a liquid glucagon stable at room temperature for 2 years.  They are entering animal trials and are hoping to start human trials in about 6 months.  If this is not ready at the time the iLet is released to consumers, the system can be ran as an insulin only artificial pancreas and ready for dual hormone use later.  And as the numbers show, even using the current insulin available use of the bionic pancreas can lead to much better control.  I don't know about you, but I'd sign up for that in a heartbeat.

Disclosure:  I was in no way compensated for this post.  I attended DTreat 2015 in Boise as a facilitator where this information was presented.  I'm just ridiculously excited about it.

DTreat 2015

I got the opportunity to attend and help facilitate at DTreat 2015 in Idaho over the weekend.  If you don't know what DTreat is, it's a retreat for young adults with Type 1 diabetes.  There are a range of topics covered like dealing with burnout and stress, college life, insurance, diabetes in the workplace, and a lot of fun things going on as well.  But most of all it's great to be able to get together with a lot of T1 peers and just have a good time while not feeling different.  Kind of like summer camp for grown ups.  This was my second year attending.  Last year as a participant and this year as a facilitator.  Sadly, this will be my last year participating, as next year I will be outside of the 18-30 year old spectrum (#old).  I am hoping that they will call me back as a speaker or helper in some fashion next year (hint, hint).  It's impossible to cover everything that goes on here, and putting it all into words is something I don't think I can do but I wanted to cover what the highlights were for me.

It was great to see this years DTreat grow some from last year.  There were over 40 T1 young adults in attendance.  A lot of attendees were from the local area with ties to Hodia from being campers previously.  But there were also a lot of attendees from other places; from Virginia, California, Washington, Ohio, Georgia, Michigan, Iowa, and Arizona.  It is exciting to see the event grow and reach more areas of the country.

Every syringe represents someones hometown

The first day was all about getting to know everyone.  As everyone showed and got settled in there was a vendor fair to get lots info and free goodies.  We played some ice breaker games to learn about all the things we have in common and the things that make us unique.  After a few dinner and a few other activities to get the group settled it was time for Game Night!

Pictionary!

Jenga!

Day two kicked off with a great presentation with Annie Schultz who works for TrialNet, and has also worked for JDRF and took part in one of the artificial pancreas trials at Benaroya Research Center in Seattle.  Annie is great and hearing her story was so amazing.  You can see a little of Annie's story here.  She talked about a few other research things going on as well.  The AP trials throughout the country and the encapsulation trials by ViaCyte are definitely something to get excited about!  After that the group broke into guys and gals groups for some more personal conversation.  The afternoon included 'speed dating' where the participants were able to choose a handful of topics they were interested in and rotate through stations in small groups to ask questions about those topics.  I got to man the insurance station.  I'm certainly not an expert but having dealt with buying insurance for 10 years I hope I was able to provide a little assistance to those that needed, mostly students still on their parents insurance who want to know what's coming when they are no longer able to do that.  The day closed out with presentations on getting older and preventing complications and stress and burnout (something near and dear to my heart).  That night we were scheduled to attend a block party concert/fundraiser but we were rained out.  Instead we went to a local sports bar/bowling alley/arcade.  I think it was a good break from all the diabetes talk and a good chance to the participants to bond and have a good time.

Some of our speakers from day two

Our final day kicked off with a Skype session with Scott Scolnick from Go Bionic.  Go Bionic is developing a bionic pancreas, theirs is the only dual hormone system  being trialed in the US.  They also just unveiled their prototype of the iLet at FFL.  I believe we were one of the first groups to get to see this presentation.  I for one was totally geeking out over this.  They are gearing up to start trials for FDA approval very soon, which is SO exciting.  I'm not going to go into too much detail on this because I think it's worthy of its own blog posts which it will get.  We had a couple of attendees from CDN, Dan and Mindy, who gave a great presentation on Diabetes and your rights in the workplace.  Dan and Mindy were great and I'm super jealous that they both get to make diabetes their careers.  Dan works in stem cell research focusing on diabetes, and Mindy is working with the College Diabetes Network.  I'm extra jealous of her because she has gotten to attend FFL and meet awesome people.  We closed out with Taylor leading the group in making "Jars of Happy".  I don't think a lot of the group grasped how great these could be if you ever find yourself battling through some depression.  I still have mine from last year and its great to get a reminder that there is more out there than diabetes and that life can go on even when it seems you don't want it to.  We had one more closing activity and even though it seemed like it had just started, it was over.

Dan and Mindy from CDN

Jars of Happy

I had very good time and I'm sad that it's over now.  I feel so lucky that I was able to be a part of it the past two years and if you are, or you know someone who is 18-30 living with Type 1 diabetes I encourage you to look into this event.  It will be back next year and it is just an amazing experience for young adults.  Taylor and Sydnee did a great job of bringing this event to Boise and have put so much hard work into getting it going, along with the rest of the committee, Gabby and Natalie.  I have already seen so many pictures and connections on Facebook in the day since DTreat ended.  And that's really what it's about.  Building connections and a support network.  And I'm incredibly grateful that it's there.

Adventures in Introverted Parenting

I haven't really been active around here since DBlog week.  There just isn't really a whole lot happening in life on T1 front.  Things are more or less stagnant and I feel a little stuck.  My most recent visit to my Endo showed a slight drop in my A1c bringing it below 8.  While I have been disappointed in my results the last few visits, I am slowly accepting that my A1c really isn't that terrible.  It's higher than I'm accustomed to but could be a lot worse.  The doctor seems to agree with that.  He's asking me to focus more on testing at least a couple times a day 3 or 4 days a week than he is seeing my A1c get lower so we can get some good results to go off of for dosing adjustments if need be.  But diabetes isn't really what I want to talk about today.  In fact its completely unrelated.

When I was a kid I was definitely an introvert.  I was more content being in my room alone or with my brother digging through a pile of Legos, or wandering through the bushes behind our house hunting for lizards than I was going to friends houses or joining a large crowd of people.  I had friends that I associated with school and occasionally had sleepovers or play dates but overall I was happy to entertain myself and more often than not I spent my free time alone.  In High School it was the same.  I had a core group of friends that I would do things with.  But I was never the type to be at someone elses house everyday after school or going out every weekend.  And as an adult, little has changed.  I still need time to myself to recharge.  Some days at work I just want to lock myself in my office and tell the world to go away.  My wife and I have friends over for dinner or go play games with people and I enjoy.  But 9 times out of 10, if given the option, I would probably choose a night in reading or watching a movie over a night out.  I am content being alone or with a small group of people, large groups of people tend to stress me out, and interacting with new people is incredibly awkward for me.  My son, The Boy Genius, on the other hand is the complete opposite.  He is the epitome of an extrovert.  He loves to be around as many people as possible.  He like to be the center of attention.  He warms up to new people quickly and LOVES to talk.  We joke that he is going to be a lawyer one day because he can talk circles around you and will continue to argue his point long after it's been made, even if it's clear that he's wrong.  At least 5 times a day he asks if he can go to a friends house.  I try to impart on him the joys of spending time alone but that just doesn't do it for him.  It's hard for me to understand his need to always be accompanied by another person.  When we're at home, he wants me to be present for whatever he is doing.  If he is watching a show or playing a video game, he wants someone there to watch with him.  If he is reading, he wants you to lay with him while he does.  Meanwhile, I am wanting to sit alone and do whatever I am doing.  Don't get me wrong, I love spending time with him and I'm happy that he wants me involved in what he has going on.  But it can be hard sometimes when opposite things make us happy.  When he wants to go see a new friend, meeting new parents is an interesting experience.  Several of his friends have parents who would like to sit and talk for hours while I am trying to inch closer and closer to the door so I can make my escape.  I'd much rather text to make plans than make a phone call.  I can only imagine what some of the parents think about me.  That I'm stuck up or anti social.  But in reality I'm just super awkward and don't want to embarrass myself.  So each day is an adventure.  Trying to find the balance between his extrovert qualities and my own introverted ones.

Anyone else have this experience?  How have you made it work when your qualities are the opposite of your child's?

"You Won't Know"

"Now even if I lay my head down at night, after a day I got perfectly right, She won't know..."

Those song lyrics seem to ring so true for life with diabetes sometimes and came to mind last night as I lay on the couch waiting for things to level out after a 2 AM low.  The evening before, we went to a neighbors house for a game night with some friends.  There was a lot of beer and a lot of delicious snack foods, including some amazing cookie dough truffles and tater tops, stuffed with cheese, wrapped in bacon (sooooooooo good).  At first I had told myself I wasn't going to drink because I didn't want to have to deal with continually taking insulin for each beer I had throughout the night.  But as the night wore on and everyone else was enjoying their beer and I had finished my diet Dr. Pepper I decided to have a couple.  Typically in this situation I would bolus for the first, then forget about any others and end up high later.  This time though I decided I was only going to have the two Angry Orchard ciders that were left in my fridge.  They are a favorite of mine so I knew they had 24 carbs a piece so I bolused for both as well as an estimate for the snacks I had eaten.  I always err a little on the low side when drinking so I tested when I got home late that night and was at 224.  I corrected with 4 units and went to bed.  Then a couple of hours later I found myself waking up sweaty and shaky so I stumbled down the stairs to find myself at 55 and eating Sour Patch Kids in the middle of the night.  That's where the frustration comes in.  Even though I did everything correctly tonight I still wound up low in the middle of the night.  I counted my carbs for dinner and bolused.  I took insulin for the drinks I had and limited myself to the amount of drinks I had planned on.  I even bolused for my snacking which is a rarity.  Then I double checked when I got home and corrected the high from my bolus coming up a little short, which I expected because I would rather be high after wards and enjoy the evening than go low in front of a bunch of people I've just met.  And the rarest thing of all is that I limited myself to about 16 carbs to fix the low.  Even though I was tired and all I really wanted to do was eat the entire box of candy and go back to bed.  I checked again before heading to bed and was 113.  After waking up this morning I was at 143.  These kinds of times are not uncommon.  Even when you feel like you've done everything right you still end up with this off the wall number, be it a high or a low.  You do exactly what you should.  Treat the low with minimal carbs and still end up high again later.  You've put in all this work and if someone were to look at this number or maybe a high A1c they wouldn't know that you even tried.

Intro to D-Traveling

The Pretty Lady in My Life and I are about to embark on a new adventure in our life.  Because she is a great person she has decided to be Gestational Surrogate.  For those of you who don't know, (which is probably everyone because I had no idea previous to this), there are different kinds of surrogates.  A Gestational Surrogacy means my wife will carry a child but will have no genetic relationship to the child.  An embryo created from another couples egg and sperm will be transferred to her uterus where it will "cook" for a few months and then get to go home with his/her wonderful parents.  Pretty Lady has been matched with a couple in Los Angeles, California.  This means we will be taking a few trips to LA, the first of which will be next week for her medical evaluation.  This is foreign territory for me as I haven't flown since my T1 diagnosis.  In fact, my last trip on a plane about a week before being diagnosed, for our vacation where I realized "Holy crap, I'm peeing a lot," and took to Google to find out what horrible thing I might have wrong with me.  I have taken a few short road trips, and one very long one before starting on insulin, but this will be my first air travel.  It will a be a quick trip, arriving in LA at about Midnight and leaving at 5 PM the next day.  I've read a lot about other people's experiences with airport security, carry ons, and the like.  I don't currently have a pump or CGM so I won't need to worry about security in that aspect.  I'll likely only be needing a carry on bag so all my D goodies will need to be in that one bag.  That will be my meter, a couple vials of insulin, some syringes and low supplies.  Enough to last about 36 hours tops.  I'm a little unclear on what to expect with all of this going through airport security.  Do I let them know ahead of time that I have these things in my bag or let wait to explain it if they ask?  Do they need to be in a clear zip lock bag?  Help! All you D travel experts.  Any tips, tricks, or advice I should be aware of before heading out on this little adventure?

DBW- Continuing Connections

This is my post for Day 7 of DBlog Week.  Interested in more?  Check it out here.

"The very first inspiration for Diabetes Blog Week was to help connect our blogging community, and that continues to be the most important reason it's held every year.  So let's help foster and continue those connections as we wrap up another Dblog Week.  Share a link to a new blog you've found or a new friend you've made.  Or pick a random blog off of the Participant's List, check it out and share it with us.  Let's take some time today to make new friends."

I have to admit that I have not done a great job of reading others posts for Diabetes Blog Week.  There A LOT of posts and I sit down with the intention of reading through them but always seem to get pulled away.  After all I still have a real person life on top of diabetes (weird right?) that requires me to take care of things as a parent, spouse, employee, employer, and human being (you know, eating and stuff).  I have given up on emptying my Feedly reading list for the next several month and have just been going through the topic list for each day.  I love seeing all the different perspectives and  I have read several posts and a lot from blogs I have never read before though.   And one of those was Kim at Confessions of a Deniabetic.  The first post of hers I read was for Day 2- Keep It To Yourself and it resonated with me on a huge level.  Kim is new to blogging but definitely not to diabetes and she started her blog for many of the same reasons that I did.  To help deal with a lot of the feelings that diabetes brings up.  I find so much of what she says very relate able.  I look forward to reading what she has to share.

Want to see what blogs everyone else loved?  Check out all the other posts for Continuing Connections!

That ends Diabetes Blog Week 2016 for me!  I officially survived my 2nd one, and I actually managed to get a post up 7 days in a row.  I think that's a record!  Thanks for reading everyone and thanks to all of the bloggers who participated for posting.

DBW- Favorites and Motivations

This is my post for Day 6 of DBlog Week.  Interested in more?  Check it out here.

"The very first inspiration for Diabetes Blog Week was to help connect our blogging community, and that continues to be the most important reason it's held every year.  So let's help foster and continue those connections as we wrap up another Dblog Week.  Share a link to a new blog you've found or a new friend you've made.  Or pick a random blog off of the Participant's List, check it out and share it with us.  Let's take some time today to make new friends."  

Of all my posts my favorite line still comes from my second post on the blog.  "This is not MY diabetes, this is OUR diabetes."  Try as I might to compartmentalize things and keep them to myself or keep things from effecting those around me it's just not possible.  Diabetes does not just alter the life of the person who is diagnosed, it is life changing for everyone around them as well.  When I child is diagnosed the parents become live in nurses, sacrificing sleep and social activities to ensure that their child is healthy.  They become an external pancreas for their children.  And then there is the financial impact.  For the siblings it means that one child in the family is likely receiving a lot more attention as Mom and Dad fight to keep them healthy.  For those diagnosed as adults like myself the rest of the family undergoes a lot of changes as well.  For the Pretty Lady in My Life it meant a lot of worry.  Not knowing what this diagnosis meant and seeing me suffer through low and high blood sugar fluctuations.  And the mood swings...oh the mood swings.  My kids don't always fully understand what is going on, they have to deal with Dad not always feeling up to playing or having mood swings.  And they have all had to deal with mental aspects of this disease and the depression it sometimes brings on for me, right along side me.  I often forget that while I'm the one checking blood sugar, dosing insulin, fixing lows, and whatever else diabetes throws at me I am not alone in the fight.  I have my loved ones going through it right along side me.

Check out everyone else's posts about their Favorites and Motivations!

DBW- My Diabetes be like...

This is my post for Day 5 of DBlog Week.  Interested in more?  Check it out here.

"If you could personify your diabetes or that of your loved one, what would it be like?  What would it look like, what would it say, what kind of personality would it have?  Use your imagination and feel free to use images, drawings, words, music, etc. to describe it."

Today is supposed to be about what I eat, but my schedule is crazy and the only thing that is very consistent is breakfast.  And my eating habits are a sore spot for me anyways so it's probably best to stay away from that one for now.  Instead I'll take a whack at turning Mr. D into a living, breathing, thing.  Instead of the lazy, do-nothing, pancreas it really is.

When I go low my diabetes is like a zombie.  Mindlessly searching for sustenance.



Or maybe it's like a stoner.  Don't want to move or speak, but I really have the munchies.



When my blood sugar is high my diabetes is like the Hulk, you never know what will set me off, but when I do...watch out


(Puny God)

Some days my diabetes is like a caterpillar in a cocoon, so quiet you hardly know its there.


(Sidenote: If you search cocoon on Giphy, you get a lot of Bjork videos)

And sometimes its a freaking monster.



But no matter what the day brings, my diabetes just keeps going and going and going and going and going and going...you get the idea.

GIF from peteneems.tumblr.com

 

And so do I.

 

Check out all the other diabetes personified posts here!

 

All GIFs were sourced from giphy.com unless noted otherwise



DBW- Changes

This is my post for Day 4 of DBlog Week.  Interested in more?  Check it out here.

"Today let's talk about changes, in one of two ways.  Either tell us what you'd most like to see change about diabetes, in any way.  This can be management tools, devices, medications, people's perceptions, your own feelings – anything at all that you feel could use changing.  OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes.  Were they expected or did they surprise you?"

Of course the change we'd all like to see is a cure.  But in the meantime there are lot of other changes I'd love to see.  At the top of that list for me would be accessibility to technology for more people.  There are a lot of great options out there to help make living with diabetes easier.  From pens, to pumps and CGMs that are becoming more accurate and integrated, and now closed loop systems on the horizon.  They're all amazing advancements that can improve quality of life for those who choose to use them.  Or those who can afford to.  I have had the opportunity to use a Dexcom CGM for a short time and loved it.  It was easier to monitor my blood sugar meaning it stayed in range more often.  For someone who forgets to test as often as they should, it's a great tool.  But it's also an expensive one.  I have a high deductible insurance plan and, while I'm thankful to have insurance at all, it doesn't cover a lot of extras.  With my deductible met I paid $300 to get started on a CGM. On top of that was another $80 for sensors.  After my deductible reset it would have been even more but I learned I could get them through my pharmacy benefit which brought the cost down to around $50 which was doable...until my transmitter met the end of its battery life.  A new one will cost me $600 if my deductible hasn't been met.  I would love to go on a pump because I know it would help me with tighter control and a better A1c.  But a pump would cost me $900 on the low end and $6000 on the high end.  With the lower end the monthly cost would be much higher,  Even with a cheaper option my monthly cost of supplies being paid out of pocket would make it hard for me to put food on the table.  Most of the pump companies do offer payment plans, which helps, but for many people that still eliminates it as an option.  I'm not against companies making money.  I don't believe companies providing these goods need to be non profit, although I'm not thrilled at the thought of someone profiting off my disease.  But I find it hard to believe that a small piece of plastic with a radio transmitter inside needs to cost $600 for the company to turn a profit.  Nor does a pump need to cost $6000.  I can get a cell phone or a computer for a much smaller cost.  I'm not an expert on pumps and won't claim to me but I don't believe there is any more technology put into a pump than a state of the art computer.  There is such a large group of people left unable to get the care they need because of the cost.  This doesn't even include the people who struggle to afford insulin every month because it costs several hundred dollars a month.
I'm not asking for companies to stop making money.  Just find a way to make it more affordable for everyone.

I work for a very large retail company.  For any given week I can look at what single category did the most sales in my store.  And in each of those weeks I can guarantee you that in the top 5 one of the categories will be diabetes.  Last week it was number 3 at $13,000.  The week before it was number one with $39,000.  Before that number 5 with $22,000.  And this is at a retailer that sells its goods at a lower price point than most others, including diabetes supplies.  I don't think that any of these companies are struggling to turn a profit.  I think they can give up a little to expand accessibility.  That is change I can get behind.

Head over and read the rest of the great "Changes" posts!

 

DBW- Cleaning out the closet

This is my post for Day 3 of DBlog Week.  Interested in more?  Check it out here.

"Yesterday we kept stuff in, so today let's clear stuff out.  What is in your diabetic closet that needs to be cleaned out?  This can be an actual physical belonging, or it can be something you're mentally or emotionally hanging on to.  Why are you keeping it and why do you need to get rid of it?  (Thank you Rick of RA Diabetes for this topic suggestion.)"

There are several things that I know I need to clean out of my metaphorical diabetes closet.  Negativity, bitterness, and anger top the list.  I have been stuck in a rut lately, not just for my diabetes care but my life in general and its a very negative one.  I have had a tendency to take a lot of things directed at me very personally, and immediately I see it in a negative light and retaliate.  This weekend was a perfect example.  A group from work formed a team to walk in the Susan G. Komen race for the cure.  I've not been directly effected by breast cancer so I can't really say that I can relate with all the people there to show their support or walk as survivors, just as someone without T1 can't relate to what seeing all the kids walking with the families at the JDRF walk meant to me.  Unfortunately, I approached the whole event with a very bitter and negative attitude.  Rather than enjoy the event for what it was, a celebration for all the women who have beaten breast cancer and a way to honor those who were unable to beat it, I could only compare it to the showing my own walk received the week before.  The difference in attendance was staggering.  A river of pink filled the a 3 lane road for well over a mile.  It was an amazing sight and looking back now I am glad that they were able to have such a great turnout.

  I have been walking around with a very bitter chip on my shoulder.  I organized a radio remote at my store and sold popcorn and drinks to raise money for my walk team and spread the word.  We made $10, which is mostly on me because I did little to plan it in advance.  I made the comment to my wife that if I had a pink ribbon on the table I probably would have sold a lot more.  It's probably a true statement but there is the problem.  I cannot compare our community to others.  When I compare diseases and try to think that one is worse than the other, no one wins.  It is just like someone saying to me "At least it's not cancer," when they learn I have diabetes.  It's disrespectful and ignorant.  It discounts the battle that those people have fought, win or lose.

So, cleaning out my closet needs to start by throwing out my bitter feelings and changing my outlook.  It won't be easy but it is necessary.  The negativity is seeping into and ruining many parts of my life.  It's time for it to go.

You can read all the other amazing posts for "Cleaning Out The Closet" here!

DBW- Keep It to Yourself

This is my post for Day 2 of DBlog Week.  Interested in more?  Check it out here.

Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?  (This is not an attempt to get you out of your comfort zone.  There is no need to elaborate or tell personal stories related to these aspects.  Simply let us know what kinds of stories we will never hear you tell, and why you won't tell them.) (Thank you Scott E of Rolling in the D for this topic.)

There aren't a lot of things D related that I keep off limits in the online world.  The semi-anonymity makes it easy to talk about the things that I may feel uncomfortable talking about IRL.  Short of lows interfering with "personal time" with the pretty lady in my life (which I have come close to writing about) and purposely taking larger doses of insulin than I know I need, it's all pretty much out there.  But in my everyday life with diabetes there is a lot that I don't talk about.  I'm happy to explain to people that I meet what diabetes is, and how it doesn't have anything to do with eating too much sugar or being lazy.  I will gladly tell someone what daily life entails.  But when it comes to the details of my diabetes I'm a little more tight lipped.  Partly because I don't really know how to explain so many parts of it and partly because I don't want it to be another thing that sets me apart from everyone else.  I'm very introverted and prefer to stay blended in the crowd and sometimes that's more important to me than making my diabetes known.

Check out all the other "Keep It To Yourself" posts right here!

DBW- I Can

This is my post for Day 1 of Diabetes Blog Week.  Interested?  Find out more here.

"In the UK, there was a diabetes blog theme of "I can...”  that participants found wonderfully empowering.  So lets kick things off this year by looking at the positive side of our lives with diabetes.  What have you or your loved one accomplished, despite having diabetes, that you weren't sure you could?  Or what have you done that you've been particularly proud of?  Or what good thing has diabetes brought into your life?  (Thank you to the anonymous person who submitted this topic suggestion.)"

  I really like this topic and it comes at a good time for me.  It's very easy for me to slip into a rut of finding all the negative.  When that depression kicks into high gear I'm a real negative Nellie.  So I'm really glad to have a push to switch it up.  Here is a small list of the things I Can Do:

I Can Eat That-  I'm a bit of rookie when it comes to diabetes, but one thing is for sure, I know how to take care of my diabetes than you do.  So when you see me munching on that fun-size Snickers or enjoying an ice cream, rather than asking if it's something I should be eating, just assume that I know what I'm doing and that I can eat that.

I Can Help Other People-  Shortly after my diagnosis as I was looking for ways to connect with other PWD I found a few great organizations.  For a couple of years I facilitated a Community Walk through the American Diabetes Association.  It was a very small affair and didn't raise much money, but it ignited a spark inside me.  Then I was able to find Hodia and help organize an amazing fundraising auction and dinner.  This year I helped JDRF with their Walk for the Cure and am helping Hodia with DTreat, a retreat for young adults with T1D ages 18-30.  All of these opportunities have shown me rewarding it is to help other people and I have met some wonderful people in the diabetes community as well.  Without diabetes I may never have found my passion for volunteering.

I Can Follow My Dreams-  Through that volunteer work and my experience with the diabetes community I realized that the passion I have for helping people and that working with others PWD leads to me taking better care of my own diabetes.  I learned that I would rather work in the world of non-profits than my current job and it has given my the itch to go to school this fall and start earning a new degree.

I Can Do This-  Some days suck.  I just want to curl up into a ball and tell the world to fuck off.  Some days are great and everything goes as planned.  But no matter how bad it gets, I know that I can get through this.  One day at a time.  And so can you.

Check out all the other great "I Can" posts over here!

Giving back and trying not to give up

My place of employment offers it's employees a chance to give back to things they care about by donating money to groups that they volunteer their time with.  This year, for my particular area, this has been a pretty big focus point.  Because, although they are a behemoth and get a lot of bad press, they also do a lot of good.  For me that meant an opportunity to get a few more people involved in the JDRF Walk to Cure Diabetes.  I haven't pushed my fundraising at all this year, settling for a few Facebook posts and a collection jar at work, offering my co-workers a chance to see me in drag if the price is right.  So far, that's not looking like an incentive for them.  Who knew?!!  And yesterday we were lucky enough to have a radio station on site and a chance to sell some drinks and popcorn for donations.  The event was kind of dropped in my lap at the last minute with no real idea on direction or help with planning so it was a bit of a cluster (to put it lightly).  In the end I raised a whopping $10.50.  Go me!  As I sat there watching people walk by without a second glance I got a bit discouraged.  Thinking that if my table had a big pink ribbon on it and I was raising money for a more glamorous disease that more people would be stopping.  But then one of the parents who I had invited to speak came and I listened as the DJ for the radio station interviewed her.  She wasn't really sure what to say but she did such a great job explaining what it means to raise a T1 child and the devastation of the diagnosis brought to their family.  The money collected wasn't quite what I had hoped it would be.  But, that wasn't really what is about, even if it took me a bit to figure that out.  A year ago I was only able to get about 5 people from work on my walk team.  This year it should be more like 20.  A year ago I wouldn't have thought we would ever get a radio station out the help us spread the word.  Next year I'll have a better idea what will work and what won't for this type of thing and hopefully have a little more planning and organization into it.  Although I feel like I've stretched myself a little thin again taking on multiple time consuming volunteer opportunities I'm very glad that I'm doing it.  At the beginning of the year I said I was going to focus more on volunteering and less on fundraising and that's what I'm doing.  I'll likely not hit my goal for my team, but I'm meeting more people in the local T1D community and everytime I meet another parent of a child with diabetes I gain even more respect for them.  I am not thankful for many things that come with this disease, but I am thankful that I was diagnosed as an adult, not a child, because I don't know how my parents would have been able to take that on, and I'm thankful I have it and not my kids.  I don't think I could bear to see either of them go through this.  Walk day is less than a week away as the logistics chairperson it is going to be a whirlwind few days, but I am so thankful for the opportunity.

Although I believe my time and experience is more valuable than the money I could raise, every dollar helps, and if you'd like to donate to my team you can do so here.

DTreat 2015

Are you 18-30 years old with Type 1 Diabetes?  Do you know someone who is?  Sign up for DTreat 2015 in Boise, ID, July 10-12.  The cost is only $75 and that covers your room, meals, and workshop materials.  If you sign up before midnight on April 6th, 2015 and use the coupon code 'easter' you'll get $10 off!  There are some great speakers lined up this year, and the best part, you get to interact with peers your own age who go through the same thing as you do.  It's like the 'me too' factor x1000.  You can read about my experience last year, for me it was like camp for grown-ups.  At least I think it was, I never got to go to camp.  It is a safe place to share things that you deal with in your life with T1D or to ask questions about things you are unsure about as you set out into life on your own.  You can get all the details and register at www.hodia.org/events.

The Right Fit

I had my 3 month follow up with my new Endo on Monday.  This was the 3rd visit since changing over to his clinic.  The first two visits were great, but I was very nervous about this one.  After taking my 6.8 A1C down to 6.6 last time, I knew this one was going to be moving in the other direction.  Keeping myself sane has been a full time job for the last 3-4 months, and living with diabetes is a full time job.  Oh, and I also have a real full time job that is necessary to support myself and my family.  3 full time jobs had proven to be too much and something had to give.  That something was my diabetes care.  I still took my daily dose of Lantus, but bolusing was sporadic at best, and checking my blood sugar was pretty rare.  So I knew things were going to be up from last visit.  At my last visit I had explained to the doc that I had been feeling a funk and testing was usually only about once a day.  His response was that if a funk had me at 6.6 then he was totally OK with that.  I didn't really know how he was going to react this time.  He shared my lab results with me and, as expected, my A1C had gone up.  A little more than I had expected but not surprising.  8.1.  Not terrible really, but still disappointing since I haven't seen anything above the 7's since being moved over to insulin therapy.  I explained to him that I had been struggling with some depression and trying to get myself in line there.  You never really know how a doctor is going to respond to your test results and your excuse for increasing numbers.  But I was very very happy with his reaction.  He was so understanding.  Telling me that he understood that keeping myself healthy mentally would take priority over my diabetes care.  He was open about feeling that an 8.1 wasn't ideal, but not really that bad, especially if I was struggling in other aspects of my life.  Words can not explain how relieved I was.  I'm not sure how I would have reacted if he had chosen to chastise me or judge me for the change in my care, as could easily have been the case.  And I really don't think I have it in me to hunt for a new Endo right now.  So having him be so understanding meant the world to me.  Sometimes it takes a lot to find a doctor who is a good fit.  Someone who takes time to listen to your concerns, explain things that you are unsure of, and shows empathy for whatever your situation may be.  But I am glad to say that, at least for my diabetes care, I've found the right place.

A Mish Mash of Feels

I have been absent from posting for quite a while.  I have every intention of writing and posting something and then life happens.  This post has been floating through my head for weeks.  I've had a rough go of it mentally for a good stretch now, I know I am sounding like a broken record because it seems like almost every post has that sentiment lately.  I've been unable to make any DSMA chats recently due to a change in my work schedule, and the only one I have attended in the past 2 months I actually left early because I wasn't feeling up to talking T1D that day.  I do usually browse through a lot of the questions and answers though.  A little while back there was some talk around losing the feel of community that led to another #Dblogcheck day.  Which I had every intention of participating in but...well, see above.  That has had me thinking about why I started my blog and where I am with that today.  Like so many others I started blogging when I came across Six Until Me, which led me to several others.  I didn't really find the DOC until later and then I started getting active on Twitter, which I had never done before.  So, I decided to start up my blog as an outlet for the things I was feeling but didn't really talk about.  The Pretty Lady in My Life can definitely tell you how hard it is to actually get me to talk about what is going on in my head.  Starting out I really liked the anonymity of it.  Only one person in my real life knew about the blog.  Even when I attended a retreat full of Adult T1s I didn't tell anyone about my blog.  When I found the DOC and started making connections it was good to see other people out there who "get it".  Getting a comment on a blog post, few as they may be, made that feeling even better.  I started to be OK with people knowing about the blog and reading some of my more personal thoughts.  After the retreat a couple of the organizers let me know they had found it and that they really liked it.  As I got more connected with the DOC and saw that I wasn't the only one who struggled with emotional side of the disease.  I had warmed up to the idea of sharing my own struggles, even though people who know me might see them.  But, eventually it became a place where I was sharing things with the online world that I wasn't sharing with people close to me, and that is a problem.  I have found myself feeling pretty vulnerable and longing for some of the anonymity back.  Questioning if I should continue blogging.  All the people in the DOC are so great and have made a huge difference for the way I handle my life with T1D.  There is no question that when I take part in DSMA and DCDE that I feel better about my diabetes and I take better care of it.  However nothing takes the place of a real live person, someone you can call or text when the going gets rough.  A person you can grab a quick bite or drink with and know that they get how frustrating it is to decide exactly what you're going to eat or drink beforehand and if you change your mind you have to bolus again.  It's small thing but one of the things that bugs me the most.  I know a few people in my local area with Type 1 diabetes, a couple even close to my age, but none that I feel close enough to or that I have enough in common besides the big D to really have a friendship with.  I do not have an easy time meeting or getting close to new people as it is.  I'm pretty introverted and tend to fail when it comes to keeping in touch regularly.  That makes maintaining friendships difficult.  So being able to find someone with T1D, that I feel could be a friend, making the effort to actually form that friendship, and maintain seems like a daunting task.  So I wonder if taking some time away from the internet and forcing myself to find and cultivate that kind of friendship might be a good idea.  Or will it just leave me not interacting with any T1 peers at all?  And where does blogging fit into it all?  I am struggling with feeling like what I post really matters, and I hate myself for thinking that it needs to, because ultimately I started this blog for the purpose of helping to deal with my own feelings about living with Type 1.  I guess I need to get back to that.  No worries about page views (not that I've ever worried too much about that), comments, frequency of posts, or how my posts effect or make sense to anyone else.  I need to write for my sake and if it happens to help someone else out along their journey, well then I guess that's just a bonus.

The great divide

A friend shared this article about a school in Tennessee that was refusing to allow a boy to bring his Diabetic Alert Dog to school with him on Facebook a few days ago.  The school went as far as to say of the child had was blind or had seizures they would allow it, but not for diabetes.  It sparked a HUGE debate (and I use the term loosely because mostly it became a teenage name calling session.  There was obviously some previous tension between these folks).  My first instinct is to side with the family that owns the dog because, legally, a service dog should be allowed to go anywhere it's owner goes, regardless of what condition that service dog is assisting with.  My biggest problem with then issue is that they are basically ranking diseases by seriousness by the treatment they will allow.  The post sparked a HUGE debate (and I use the term loosely because mostly it became a teenage name calling session.  There was obviously some previous tension between these folks).  I was surprised by how many people thought it was OK that the school was not going to let the dog into the school.  I'm all for everyone having their own opinion and voicing but what bothered me was the split between the group over whether DADs are needed by some people, when and where they are needed, and the judgement on what is the correct form of treatment for one persons diabetes.  And the fact that some people believe that because diabetes is easy for them that the same is true for everyone living with it.  Completely discounting the fact that some people struggle with the disease.  You can see some of the comments below:

"I can't help but find it ridiculous to sue over something like this. How many diabetics do fine without a dog? I'd be willing to bet there are kids at this very school who have diabetes and don't have a dog."

"yes people do fine without dogs but I know my service dog has saved me from countless seizures and complications."

"I get it, I love dogs too and if I had a dog and an excuse to bring it around I might use it too... That being said, if your dog is preventing countless complications I'm curious what they were and exactly how the dog prevented them. I'm also curious how well you take care of yourself if you're having countless near seizures. That or I question your honesty. 

Sure, service dogs might help people with PTSD, seizures, and diabetes, but if that's your argument then why shouldn't everyone be allowed to bring their dog everywhere? My wife would be in a much better mood with a dog around, so it could really help her. 

Bottom line, in sticking with the original post, this kid doesn't need his dog in class and the other kids aren't going to learn as well when distracted by a dog. And the dog has to eat, and drink, and go to the bathroom, and on, and on. 

Maybe we just handle diabetes differently, but it's really not that bad. It's a constant minor annoyance and doesn't mean I need a bunch of special help or concessions made"

"And I am sure people with PTSD or seizures can do fine without a service dog also but service dogs seriously help them as well."

"Why survive when you can live  ..."

"If you remotely take care of yourself, diabetes isn't a big deal. And you wouldn't need a dog. You know what else can let you know your blood sugars are low? A glucose monitor ..."  (Clearly this person has not dealt the hypo unawareness)

"I do not have a pump or a dog or a CGM and I haven't had a seizure. I have also had diabetes since age 11 (12 years). 
I'm sure there are legal grounds to sue, but is it necessary? Would it better the community? Would it inspire people to promote diabetes awareness and research? Or would it make us look like a bunch of ungrateful jerks? Just because someone CAN sue, doesn't mean they should."

"You're not helping. You're spreading this perspective that diabetes limits you and talking about how you have a disability. I reach WAY fewer people than you do since I'm not on the news, but I spread the perspective that diabetes is not a big deal and doesn't hold me back in any way. All the people I've met through fighting and through jiu jitsu would be so confused to see the way you talk about diabetes when they see me in the gym several times each week with nothing more than a bag of skittles just in case."

"Main point ... Some people use diabetes as a crutch, some people take shots and deal with it ... It is what it is" (Not gonna lie, that stings more than a shot of Lantus)

You get the gist.  From there it deteriorated into representing "the rez" and not letting mutts into my casino unless they can bet.  Most of the negativity came from 3 people with mostly just one person (not the original poster even) defending their view.  At one point someone pointed out the gender split, mostly female defending the side of the dog owner and males on the opposite.  I considered chiming in to disregard that split but thought better of it because of where the conversation had headed.

And now my point (yes there is one, it just took a long time to get to it).  This is a small sample size but it seems to me that it represents overall D community very well.  There are so many differing opinions on what this disease entails for a person,  What it is and what it isn't.  Is it just a disease, or is it a disability.  Some people find it easy to live with and don't struggle and some of those people (certainly not all) discount the feelings of those of us who do struggle with comments about how easy it is and if you just take care of yourself then diabetes is no problem.  As I read through the thread and fought the urge to go off I thought about the disparity between viewpoints there and in our overall community.  And it is no wonder to me that our advocacy efforts struggle and do not reach the heights of some others.  If we can't agree on what treatment is acceptable for others within our own community how can we expect anyone else to get on board?  If we have some people putting out there that diabetes is so easy and if you struggle then you're just not taking care of yourself while others struggle just to check their blood sugar once a day, how can we be surprised that the rest of the world doesn't understand while it's a big deal?  You don't see people with cancer arguing over whether someone is in the right or wrong for choosing one treatment over another (or maybe you do, I'm not really plugged into that).  You don't see the cancer community trying to decide what type is worse or perpetuating stereotypes about other kinds of cancer.  We fight among ourselves over things small and large and then we are surprised that sometimes it hard to others to buy into what we're doing.  I don't what the fix for this is, but I definitely feel that it has to change if we are going to get beyond where we are now.

Invisible (What you don't see)

I live with a couple of diseases that could fall into the term "invisible disease".  I take medicine for them daily, they effect my everyday life and the lives of those closest to me.  But to look at me you would probably think I'm just fine.  And I am for the most part.  Aside from a lazy pancreas and sometimes chemically out of whack brain, I'm a healthy person.  But I do live with a chronic illness that most people just don't see.  All of the things below don't necessarily apply to me but I think they apply to a lot of people who live with invisible disease.

Many people sleep soundly.  I laid wide awake with tears running down my cheeks

Many people enjoy their meal without a second thought.  I worked out the carbs in my head and the math to determine how much insulin I need

You might be tired because you were up late watching a movie,  I'm tired because I was up at 2 am treating a low blood sugar

Some people spend their money on new gadgets, nights out, and fun things, Some months I spend over $500 on supplies and appointments to keep myself alive

Lots of people get nervous over getting their flu shot. I pricked my finger 10 times today and injected insulin 6 times

You get out of bed and shower, decide what to have for breakfast.  I have an argument with myself about why it is worth it to get out of bed today.  Then I check my blood sugar, decide what to eat, and figure out how much insulin to take, fill up a syringe, and inject.

Some people get shaky with low blood sugar after not eating lunch.  I am responsible for managing my disease with a drug that, if not handled correctly, could send me into a hypoglycemic episode, or even kill me

I battle the thoughts inside my head that say I'm not good enough.

I stress about the amount of money I spend to manage my disease and if it is going to keep me from paying my families bills this month

I tell myself I'm broken

I tell myself that even though my joints hurt, my head hurts, and the last thing I want to do is get out of the bed and deal with other human beings, it is what has to be done and I shouldn't be so selfish

I tell myself that my wife and kids deserve better

I fight back tears at random moments during the day

And through it all most of the world doesn't have a clue about any of it.  Because I don't look sick and I try to put on a happy face.

Do you relate to any of the things on the list?  What other things should be on the list?