Sunday, June 17, 2018

Camp

It wasn't until last year that I actually started to enjoy camping.  To be honest, I had never really tried it.   My first time sleeping in a tent was on the trails of Kilimanjaro which was probably the most extra way of trying tenting for the first time.  Growing up, we would 'camp' which meant renting a trailer at Darien Lake, so I am not sure if that classifies as camping or not.

Since trying camping last year, I have grown quite interested, which makes my husband happy because he owned a tent for years and I refused to sleep in it.  Now, I happily help him set up the tent and cook on the camp fire. While camping is relaxing and a great way to get away from our busy lives, diabetes still comes for the campout.

The top concerns are always keeping my insulin cool, making sure I have low supplies near by, keeping control of my blood sugars and making sure I have a bathroom close enough.

We have always camped with electricity near by and recently acquired a plug-in cooler which means I can keep my insulin cool if it happens to be warm.  Often enough, I can find shade and keep my insulin away from the heat.    I worry that if my insulin were to get too warm, I wouldn't be able to use it.  

The second concern is the snacks for middle of the night lows.   Since we don't want creatures visiting us in the night we often keep our food in the car. One of the first times we went camping, I didn't put any low supplies in the actual tent. Thankfully, Mike hadn't come into the tent yet and was able to grab low supplies for me to keep with me.

Camping means lots of delicious carb filled snacks like marshmallows, chips and sugary coolers. It is super easy to lose track of where your blood sugars are at. While I don't aim for having perfect blood sugars while away, higher blood sugars means attitude changes, feeling lethargic and frequent bathroom visits.

Speaking of bathroom visits, if you have type 1 diabetes you know that sometimes the bathroom is your midnight or 3:00 a.m friend.  I often joke that if I am not getting up at 3:00 a.m to use the bathroom than I am getting up at 3:00 a.m to drink a juicebox.  I almost always have to use the bathroom in the middle of the night while camping which is both terrifying and inconvenient.   Last year when we went to Darien Lake we were so far from the bathroom, I ended up driving my car in the middle of the night to get there.

While these things can be frustrating while camping, I try to not let it spoil the fun of my new found enjoyment.  As always, I will learn of ways of making it all easier, like booking a campsite that is close to the bathroom, or keeping rockets in the tent.

Kayla

Thursday, June 14, 2018

FWD (Friends With Diabetes)

I have always been fascinated in the human story.  The unique lived experiences that we all have and create along the way.  The stories that shock us, make us cry or send us into deep belly laughs.  I love to hear stories of the past that would otherwise be forgotten or stories that we tell over and over again because they mean so much.  It's likely no surprise then that I enjoy blogging and documenting my personal stories along the way.   I often take time to think about where I once was in my diagnosis and where I find myself today.  
Dani & I (June 13th 2018)

I feel as though I have been lucky along my path with diabetes, I have always been greeted with support and not once felt alone in my diagnosis.  I always had someone to connect with whether that was in person or online.  I know not everyone has that privilege.  The biggest factor in keeping my chin above water, is the people that have come into my life as a result of living with diabetes.  They truly have become part of my life story in a way that is much larger than I would have ever imagined. 

Upon diagnosis, I met with Chloe, who was the first type 1 I had ever met.  I remember the exact feeling of sharing our stories - our life stories.  Hers, about her life with diabetes so far, while mine was just beginning.   I remember hearing what her symptoms pre-diabetes was and feeling so connected.  I get it, I was there too.  From there, I began to meet more type 1s through Connected in Motion and my clinic.  I met up with someone I had gone to elementary school with, Mitch, who had lived with type 1 for quite some time at that point.  Once again, meeting with Mitch was a reminder that I had support, and that I wasn't in this alone.  

It became apparent that aside from taking insulin and checking my blood sugar for the rest of my life, I needed to find these people. People like my good friend, Dani who is the absolute nicest and most caring individual I have ever met.  These are good hearted, full of lived experience people.  It wasn't just a matter of finding someone who knew what it was like to have a low blood sugar, but also finding a person who just genuinely wanted to help and be apart of my life story. 

I met so many wonderful people each and every year, trying to connect others so they could also feel this special bond.  Keeping in touch with 'my tribe' because I knew that you don't find these kind of relationships so easily, I was lucky.  Almost ten years into my diagnosis and my friends who live with diabetes outweigh the number of friends I have without diabetes.    I am so, so incredibly thankful for all of them who have shaped me along the way, been a source of motivation when I struggled, and have just been there through it all.  

Kayla 





Friday, June 8, 2018

Packing Diabetes

Darien Lake (1995-ish)
Travelling was a huge part of my life growing up.  We always went away during March Break and almost always would rent a R.V at Darien Lake in the summers.  We were spoiled in knowing that each year we would be given an opportunity to explore somewhere new.   I recall my mom's packing methods.  She would pack every kind of medication we owned, if you had a headache, she had the remedy, sore throat? allergies? upset stomach... she's got you covered.   It was a safety blanket knowing that if anyone fell ill, she had her magic bag of medication that would likely be able to help you.

I remember the days of packing just my clothes and what I felt I needed pre-diabetes diagnosis.  Fifty tank tops and twenty dresses, costume jewelry and books I'd never read.   I knew that if I forgot something, it wouldn't actually matter because likely my mom had it anyways.   I would take hours just picking out what I thought I'd wear - only to wear the exact same bathing-suit everyday.  It wasn't a huge hassle or worry, it was exciting.

Packing with a chronic condition is a lot less exciting.  You feel like half your luggage is packed with medical supplies, leaving you with just a portion to pack with the 'fun' stuff.  Everything is strategic.

"If my luggage gets lost, how many supplies will I need on my person?" 

"If my site rips out twice, and one malfunctions, how many sites do I need for my trip?" 

Trying not to get too wrapped up in the what-if's you try to pack practical, but with caution.   It is so easy to get caught up in what could happen, and begin to panically throw extra vials in your carry-on and enough sites for a round-world trip.  It's not easy being practical because emergency situations happen all of the time.  How many times have you been at a friend's house and had a site ripped out or you realized your reservoir is holding only five units of insulin? Now place yourself on an island in the Caribbean and imagine that scenario.  

I have travelled many times since my diagnosis in 2009, far-away places like Australia and Tanzania. I've managed to always come back with plenty to spare, but I rather that be the situation.  I am not sure the practicality of packing diabetes supplies ever comes. There are always those thoughts that make us grab for more 'just in case' and I think that's okay.  After all, my mom did that long before I had diabetes. She was literally ready for the plague if it was ever to hit Disneyworld.  

Kayla


Thursday, June 7, 2018

Lived Experience

Once you're diagnosed you begin collecting.  Collecting resources, meters, lancets by the tonne. You collect things that you may never look at or need again, pamphlets about proper injection sites, booklets about healthy eating or log books that never will feel the splash of ink on their charted pages. We collect things because we do not know what we really need quite yet.  We collect things because we don't want to be without.

One thing that we collect that is important and not left to collect dust, are the people we meet along the way.  Whether that is the nurse that first helped diagnose us or the first person you met that lives with type 1 diabetes.  These people come into our lives and stay.  They become a shoulder to lean on, or a listening ear and they also become our resources for lived experience which is one of the MOST important and prized sources you can get.

As I go through life with diabetes, almost at at the ten year mark in 2019. I am always in awe of the people I've 'collected' along the way. Some I don't speak to very much, but I watch on the sidelines as they achieve so many amazing things. PHD's, families, weddings and dream jobs, butI also watch as they pull through the hardships of diabetes burnout, job loss, hospitalization, insurance issues and so on.  These people are the people that make living with diabetes a little easier. It is reassuring knowing that at anytime, no matter what life issue I come across, I have someone to speak to. 

Like many of my readers know, I recently got married (don't worry a blog will be coming!) Having a collection of type 1s to give me advice was amazing, those that have gone through the crazy moment of marrying the love of your life. Next, family planning, leaning into those that are going through the motions before me. Forever, I will hold those friends I've collected tight. 

Kayla

Friday, May 11, 2018

One Size Fits All Care

I've come across many people with diabetes who accept and handle their diabetes in different ways. Really and truly as much as people think diabetes is just about insulin doses, carb counts and blood sugars there are many factors that come into play when trying to manage the disease. The frustrating part of it all is that usually the care in which a person receives in clinics and hospitals alike, is the one size fits all care.

It's unfortunate because many (not all) health care providers just don't have the time or energy to sit down and focus on what the patient/person with diabetes truly needs to see the light at the end of the tunnel.   Sometimes it is a matter of listening or a matter of providing different options for care. For instance, in my case I knew my downfall came with blood sugar checking. I knew in order to avoid missed finger pokes, I needed a sensor to stay on track.    That isn't the solution for everyone, it was just one of my solutions.

I often meet with youth who live with type 1, many who have had diabetes longer than I have. They're experts in their own diabetes care, and often times they know what they're slacking in and what the answer is, but the idea of changing or putting in the extra work is daunting. I get it!  Imagine back to when you were a teenager and think about all that was on your mind, now throw in a complicated autoimmune disease.  It's daunting!  

The care one person needs can be completely different than the next.  It's about listening and finding out what the obstacle is and how as a whole community (I'm talking family members, healthcare team, friends etc.) can help the person with diabetes in a way that makes THEM feel comfortable in managing their diabetes in a successful way.

Kayla







Thursday, May 10, 2018

The Running Shoe Effect

Does anyone else feel like as soon as they put their running shoes on, their blood sugar decides to plummet?  I could be running high all day, but as soon as I pull out my Nikes from the closet and lace them up, my blood sugars begin to trend down, causing a delay in said exercise.

Yesterday, M and I decided to go for a hike after dinner. My blood sugar was 6 mmol/Land steady, and I really wanted to not treat pre-hike because 6 mmol/L is a lovely number to be at.  Unfortunately, as soon as we parked our car in the lot before the trail, and began our way through the hilly dirt trail, M scanned my sensor and said, "You're at 5 mmol/L and heading DOWN!" Of course, that 6 didn't last very long before I was having to eat candies for the entire hike because being stubborn and wanting to hike, I wasn't willing to turn around and go home.

We trekked a bit further before M decided we shouldn't go too far into the trail (for obvious reasons and he wasn't likely going to be able to carry me the rest of the way, if I did pass out) I was a bit annoyed at diabetes for the fact that my blood sugar was quite high all day despite going for a walk earlier and cleaning the windows and deck, which are two things that usually lower my blood sugar and now here I am plummeting into the ground of blood sugars.

We stopped a few times seeing a deer and her babies, talking to some other hikers passing by and taking silly photos of one another, but ultimately I could feel my blood sugar still dropping (cue the white spots in vision and weird mood coming on.)  

Ultimately we got a hike in and my blood sugars were merely a lesson that at anytime diabetes can do what it wants so you have to role with the punches.

Kayla

Wednesday, May 9, 2018

Tech Support

Often we talk about how diabetes technology is helping the person with diabetes.  We hear about how it will make the  person with diabetes lives easier by allowing them to ease some of the burden of having to run their entire pancreas with blood drops and syringes.  But, what I have come to realize is that diabetes technology not only benefits me as the person who has diabetes, but also everyone around me.

With two weeks before I become a Mrs. I am soaking up all the love from my friends and family. We had my bridal shower a couple weeks ago and my bachelorette was just last weekend.  Now, I've spoke about the affects of diabetes and alcohol before, so I will leave that aside; however, it was so key to have the technology during these fun times to help assist my friends keep me safe when I am too busy having fun!

More and more I am feeling thankful for the new diabetes technology that is honestly changing the game of diabetes.  My fiance does not have to wait for me to stubbornly check my sugar anymore, he can just secretly swipe by my sensor.   He doesn't have to worry about us remembering if I bolused for dinner, we can easily check my pump to make sure it happened.  I think about the ease of mind that the technology must bring those people around me. I know that the tools that were designed to make the person with diabetes lives easier, in return also helps the ones that love them too!

Kayla