Thursday, March 30, 2017

Functioning Human with a Plastic Pancreas

CGM is such a wonderful invention, I truly believe that my next a1c will be so much better than my last and I honestly believe that over all I am working on being healthy, restoring the feeling of having steady blood sugars and just feeling like I have some sort of grasp.  But, I am both emotionally and physically exhausted and even putting my thoughts together on this cold rainy Thursday is a task.

I was up likely every hour listening to pump alarms, finding a comfortable position to sleep after getting up to treat a low and moving Cola from beside my head to my feet every hour or so.   Poor M, spent a good chunk of time listening to my frustrated grunts as my alarms went off and wrappers unfolded and I feel guilty about disrupting his sleep.  

Between mental breakdowns this morning, chasing a high from a yogurt and bran muffin I ate that I didn't want to eat and sipping my cold coffee between working and trying to grasp energy from upbeat songs on youtube. I am trying. I am trying so hard to be a functioning human with a plastic pancreas.

I want to be healthy. I want to see straight lines and I want to have the best a1c yet, but that comes with a lot of focus, energy and time. It comes with being proactive in a world where we are busy and don't always know when we will eat next or what is for dinner.  It comes with patience that it is going to be okay and it comes with strength that I sometimes just can't muster up.

Kayla


Tuesday, March 28, 2017

High Blues

I wrote earlier about Low Blues  and now here comes the post about the High Blues, which are equally as defeating, if not greater.  You see, for the most part when you're low, or constantly going low the solution is a bit easier, eat more sugar.   Most often eating will bring your blood sugars up in no time (at least for me) the repetition of low after low is what gets super irritating because believe it not, eating yummy snacks constantly for lows isn't as lavish as it sounds.

Now, then there are high blood sugars that charge into us like a raging bull, a freight train or your worst nightmare.  When I get the alert my blood sugar is high and I see two arrows up on my pump screen (CGM) and I lose my mind.  It's like trying to catch a rabid animal (you get the point that highs suck!) Often times as long as I have a sensor on, I can sometimes detour it with a correction bolus, but other times when I am not alarmed (no CGM) it sort of just hits me out of nowhere and then I have to spend all my concentration on trying to bring it down.

Bringing down blood sugars seems easy in theory but for me, I'd say 9 out of 10 times, I have to literally tackle it down and it drives me crazy - literally crazy.   I spend most of my time looking at my CGM screen hoping that I see trending down arrows, or a drop of any kind.  I spend time trying to calculate if I should correct, override my basal, or run laps around the house.   I spend a good chunk of time swearing at my pump, wishing that I didn't have to deal with diabetes and ultimately feeling defeated. 

Alas the high blues, that feeling where you are pretty sure diabetes is running the show and you are left to deal with the after math.  That feeling where you wonder how long this could possibly go? How much time will this take from me? How much brain power do I have left to give to anything else?  It feels like defeat.

For the most part I have been trying so hard to keep between the lines of 3.8 mmol/L and 8 mmol/L. Some days are easier than others and those easy days usually mean that I have kept my carb intake super, super low.  Anytime I even attempt to 'treat' myself to something carby, I pay the ultimate price of being high for what feels like forever.  When you have been within 'range' for days then a high blood sugar hits you, you feel awful.

There are so many times I have felt on the verge of tears, wondering how I am going to keep up with this constant struggle, not knowing why my blood sugars do what they do, and trying to understand what my body wants from me.

Kayla

Sunday, March 19, 2017

THIS CARB RATIO ISN'T COOL ANYMORE!

Yesterday Mike and I went shopping and I happened to witness the fun moment where a thirteen year old girl didn't want her mother picking out her clothes.  As I looked at the clothes on the racks, I couldn't help but listen as the mother-daughter pair stormed around the store. The mother threatening to not buy anything and head home, and the daughter complaining that the mother never let's her pick what she wants to wear.  The mother trying to make things better, holds up a black sweater with a popular logo on it and the girl screams, "THAT BRAND ISN'T COOL ANYMORE!"  I remember those days of my mom not letting me wear certain things, or straight up telling me something did not look good, cue in the days of orange foundation. I so badly wanted to just tell the girl, 'listen, your mom is right...' but the more I watched the mother-daughter duo go in and out of the isles, the daughter walking faster and away from the mother as the mother yelled, Don't walk away from me!'  I began to realize, you know what, my diabetes is just like an angry thirteen year old girl.





My diabetes is usually angry at me.  Even when I remotely try to be nice to it, it somehow finds a way to test my patience.

My diabetes is always complaining about my choices.  Remember the time I gave myself a cookie, ONE COOKIE, and I spent the next two hours regretting something that I treated to myself.  Or, I take myself on a nice walk and what do I get in return?  a low blood sugar that sends me back home.

My diabetes changes its mind, of what it prefers and what it doesn't.    There are times when a bolus of 3 units for a meal is perfectly fine, same meal the next day, and 3 units just doesn't cut it.   THIS CARB RATIO ISN'T COOL ANYMORE! 

Lastly, my diabetes seems to have its own opinions and mind of its own and the more I try to come to terms with how my diabetes works, the more I want to just work with it and not against it... I want to understand it, but I also don't want it to take away from me, whether that's my sanity or ambition to keep going on.  Diabetes isn't actually a teenage girl, it can be a lot of things and honestly, sometimes I feel like that angry teenager rather than the mom.  But, regardless, sometimes as we watch our blood sugars rise & fall we have to find that middle ground where we can try to make things work, we try to compromise, but also take a stand, that we will not just give in.

Kayla


Thursday, March 16, 2017

Low Blues

There are two extreme sides of blood sugars, the highs and the lows.  Anything in between is all good, no sweat... but when you find yourself on either end of the spectrum, you're bound to feel some pretty awful feelings and I am not talking about physical symptoms right now, but mental.

Today, I am going to focus on the mental aspect of low blood sugars because after a ROUGH night of five low blood sugars and a few during the day today, the feelings are raw.  I am about to share a part of diabetes that is often masked with positivity and that 'we can do it' attitude from my end.  But, here it goes. 

 I am mentally and physically exhausted.  Since putting on a sensor, I have changed my diet drastically to keep that daunting line of blood sugar within the two targets.  I have gone fairly low carb in order to make this happen and the results - AMAZING. I have been able to stay within the target lines with ease, except the time I slipped up and had a cookie . . . but to be honest the cookie was out of stress this morning (yes I ate a cookie for Breakfast) and even though it was delicious I paid the ultimate price with a high blood sugar that lasted HOURS.  

Anyways, back to my emotions. After getting hardly any sleep, constantly waking up to a screaming alarm telling me I was low, shoving rockets into my mouth as I was half asleep, wishing diabetes would...leave, today I woke up less than refreshed.. in fact I am pretty sure I felt more refreshed pre bed time, than post.    I had to be out of the house by 9 a.m and after the 'cookie accident' I began to get frustrated with my now high blood sugars.   

 Like seriously body, you wanted sugar all night, 
and then I generously give you a cookie and you betray me like that! 

As I rage bolused and bumped my pump up to 150%, within a couple hours I was trending down and by lunch time I was at my ideal blood sugar. Then it was all down hill from there, low after low, treading water just to keep my blood sugar stable and not plummeting. I am sure it was my fault for stacking insulin, but I was frustrated.  I wanted to punch diabetes right in the face.  I was tired.

By 8:00 p.m I was so low I felt myself becoming less like myself, trending down arrows and a low suspend shouting at me from my pump. I wanted to cry.  Mike watched as a smothered peanut butter on everything (yes, I know PB is low carb, but you can smoother it on carbs and it's delicious)  and I am sure he knew that I was frustrated because I am pretty sure I yelled at him... but regardless, in my mind I felt so completely drained. So over trying to keep myself within those lines. So tired of eating for the sake of feeling normal.   

Diabetes totally drains you.  It can make you literally go crazy, low after low after low, you start to not want to treat it and that's the scariest part.    The catch is that once you start to eat and your blood sugar begins to come back, you start to feel more like yourself...but it's getting to that point that takes the work.  

Kayla 

Monday, March 13, 2017

Diaversary

People may wonder why every year, people with type 1 diabetes choose to celebrate their diagnosis date.   In the 'diabetes world' it is known as a Diaversary.  I learned early on in my diagnosis the importance of celebrating the date, not because we are celebrating that we were given this diagnosis, but rather we are celebrating that we have made it this far.

Today is about giving myself credit for the work I have put in. It is about embracing the technology and mind set that has pushes us through each day that diabetes has rears its head at us.  It's about acknowledging the support systems that have lifted us up when we felt like we couldn't do it anymore and it is about finding the good in the otherwise daunting disease known as type 1 diabetes.

Today, I am thankful for my family and friends that have stood by me and encouraged me to keep pushing. I am thankful for those friends who carry sugar on them, who make sure I am O.K and for those people in my life who have lend a shoulder for me to lean on.  I am also thankful for all the opportunities that diabetes has given me. It has allowed me to find a passion for helping others, writing and travel.  I am forever grateful for the people I have met along the way and continue to meet because of diabetes.

We cannot always predict the future, and at anytime life can change drastically like mine did eight years ago today, but we have the choice to accept it or deny it and that will greatly have an impact on our future.


Friday, March 10, 2017

A Work Of Art



This above is a work of art, painted by my blood sugars.  This right here is me trying my absolute hardest to stay between the green lines (3.9 mmol/L - 7.8 mmol/L) but clearly riding an unfortunate rollercoaster while trying to do so.  This is diabetes. 

Often enough people assume that diabetes management is about taking your medicine, watching your diet and working out. After all that is sort of how we solve a lot of health issues, we take our medicine, do what our doctor prescribes whether that is rest or walking 5 km a day and that's that. Diabetes management is multi-faceted.  We are expected to look, feel, and act like normal human beings all while trying to keep between the green lines.

It's not easy.  I have spent the past 2.5 days really focusing on my graph. Listening to the alarms of highs and lows and trying to act before it gets too wild.   It is absolutely amazing to see what foods send my blood sugars to the moon (Pasta!) and what foods have little to no effect (Apples!) and also to see how regardless of what I do/eat sometimes my blood sugars just do their own thing!  

This illustration is how my body is running, it is the ride that I am aboard (and cannot get off) and it all goes on while I try to balance my life.

Kayla 



Thursday, March 9, 2017

Glitter


What does the word 'control' mean to you?   The word control is thrown around the diabetes world like glitter. Everywhere we go people ask . . .


 "do you have your diabetes in control?" 


"those complications won't happen to you because you're in control right?"


"you need to control those sugars!"

"you should try x, y & z, you'll have way better control." 




And while we nod politely, we question whether or not we are in control? Who is in control? Because some days diabetes feels in control and I feel more like a passive passenger who wishes the driver would turn the air on because it's getting hot back here....

I personally do not like using the word control, and maybe I've used it before without noticing, but I'll blame that on the fact that control is one of the primary words used for diabetes both socially and medically.  We expect that our blood sugars are in control if we want to drive, if we want to  have children, even if we want to use the elliptical at the gym (warnings for people with diabetes everywhere!)

Diabetes is a disease that requires 24/7 care. It requires a whole bucket of guesstimating and a four leaf clover for good luck.   As much as we strive for 'control' sometimes no matter what we do, diabetes fights back with vengeance. If we got through the day without eating the entire pantry, or having to run our insulin pumps at 150%, does that count as control?  

Each day is a different story and some days are better than others. What control means to one person, may not resonate with another.

Kayla