Moving Out: Life Change with T1D

Well, after a few weeks off from blogging… I am finally back. Most all of my friends and family know that almost a month ago, I packed up and moved to Panama City Beach all on my own (well with Nala, of course). Moving out is something that I was scared to do because my family and I are very close, and I didn't want to be that far away. But, I am doing what I have to do to get the degree and licensure that I need to work in the field of my dreams. So… Since this blog is all about diabetes, what does moving out have to do with diabetes? Well, for those of you who do not understand T1D very well, life change causes diabetes to change and living alone with such a fragile disease is pretty scary. Here is my experience so far…

First of all, just the idea of going to sleep at night knowing that I am alone was enough to make me scared to go to sleep. Let's be real, low blood sugar in the middle of the night is a common killer of type one diabetics and this is something we all know but we try to forget. My first few nights alone, I had to learn to rely on technology to keep me alive and, I had myself setting alarms to wake up and test my blood sugar multiple times throughout the night just to make sure that I was OK. I think that nighttime was one of my biggest fears in living alone with diabetes. Obviously, I have done just fine and I'm no longer waking up multiple times to test my blood sugar in the middle of the night.

Something else that has taken some time to adjust to, living alone with diabetes, has been not having someone to come home and complain too. That sounds bad, but when I've had a bad diabetes day I always used to come home and show my mom my Dexcom graph or just cry about how bad the day had been. Obviously living alone I am… alone, but not having someone here to help me through my bad diabetes days made me feel even more alone. Yes, my mom and many of my "diabesties" are just a phone call away, but it's just not the same. I began to realize just how invisible diabetes is when I was surrounded by people who do not know I have it and do not understand the struggles. It's easy to put on a strong face and pretend that everything is okay, but anyone with chronic illness knows that sometimes, you've just gotta cry. 

Something I always knew about diabetes but never really understood to the fullest extent was how much stress affects blood sugars and insulin needs. I have only had diabetes for 11 months and in those 11 months I have dealt with plenty of stress, but, the stress of moving out, living alone, and starting a very difficult program in school was enough to make my diabetes whack. My first week of school, I dealt with crazy high and low blood sugars. Sometimes I felt like the insulin I was getting was straight water and other times I felt like my insulin was 10 times stronger than it should be… My Dexcom graph looked like a roller coaster and that is just not something I'm used to. I have made more adjustments to my pump settings in the past month than I have since starting the insulin pump but, I think I finally have things where they need to be and I think my nerves are calming down a bit.

But, don't let this sound like it's all negative and that I am doing horribly living along with diabetes… Because that is far from the truth. In the past month, I have learned so much about myself, my body, and my diabetes. I think living alone is something that every type one diabetic should have the chance to do because it forces you to problem solve on your own and to figure out what you need to do to make it through each day. Mom is not here to come back to my room and sit with me while I treat a scary low blood sugar in the middle of the night, no one is here to help me insert a new site in an awkward spot, no one is here to help me do the math and make pump setting changes, I am left to my own devices and I am forced to make decisions on my own. 

I am still a diabadass and I am still beating diabetes every single day. I am having a blast in school, I am learning a lot, and diabetes is just along for the ride. I am trying my hardest to not neglect my health but I am also trying to remind myself that on this journey, I cannot let diabetes consume me. I am enjoying school and being a student PTA and I have the BEST classmates a girl could ask for. I cannot wait to see where the next 2 years takes me! 

Two weeks ago... 

This week... Crushing it!! Take that T1D.

 

 
 

 
 

Diabetic Dabs Review: Creating Better Habits

Let's face it, diabetes is messy, in multiple ways. If you have T1D or are the parent of a T1D, you know that between test strips, alcohol wipes, smarties wrappers, empty juice boxes, used needles, and blood, our diabetes bags tend to be a complete mess. One of my worst diabetes habits is the way that I handle my bloody fingers. This is going to sound nasty to my non T1D readers, but my T1D readers will totally understand. Here are a few ways I tend to handle my bloody fingers after testing my blood sugar: wiping it on my diabetes bag/meter case, wiping it on my clothes, licking my finger (*cringe*), or just rubbing my fingers together and leaving blood stained fingers. Could I use alcohol swabs? Absolutely. But, those little things are all wrapped up in a package and have to be opened, leaving a little extra trash to find a place for. Alcohol swabs also tend to dry out my skin. In 9 months of living with T1D, I have developed some pretty bad habits, but I am working to break those habits with a product I have found, Diabetic Dabs.

Diabetic Dabs are a product dreamed up and created by Liz Sacco, mom to David who was diagnosed with T1D in 2011. Liz, like most of us, was trying to find a way to clean fingers better after blood glucose testing and thus she developed Diabetic Dabs. You can read more of her story here. Liz was kind enough to send me some of her product to test out and review, here are my thoughts on it.

Diabetic Dabs come in a package as pictured and there are 4 sets of Dabs in each pack. The Dabs I received are square but they also come in a heart shaped option. Each sheet has an optional adhesive on the back so that they can be stuck to a meter case. I chose not to use the adhesive because I keep my meter and supplies in a small makeup bag. Each dab is thin, alcohol swab sized, and soft.

Initially, I did not realize it is recommended to remove each individual sheet from the bunch before using and I wasted a few dabs because my blood soaked through. Another issue I ran into initially was breaking my bad habit. I would pull a Dab out before testing but I would always forget and lick my finger instead. Once I made it habit to use the Dabs and use them correctly, I was able to really see how well they worked.

First, these little things are SO soft! Alcohol swabs are great, but they tend to dry the skin on my fingers out whereas dabs are soft and dry so this is not an issue. Next, they are very small and create very little trash. They are also easy to tear off from the bunch, which makes them easy to access. Another plus is that a portion of every sale is donated to diabetes research. Finally, the most important part and my reason for trying these, they have created much better habits for me when testing. I found in my few weeks of using this product that my clothes were no longer blood stained, my new diabetes bag had zero stains, and I was no longer licking my fingers to get them clean.

All in all, I think Diabetic Dabs are a great product. If you are willing to make the change and create new habits, this is a great product to try. You can put the alcohol swabs away and quit licking your bloody fingers. Thank you Liz for sending me your product to try, I will definitely be ordering more in the near future!

-Ashlyn





*Note- this product was sent to me at no cost for the purpose of this review.*

Friends for Life 2016: Suddenly, I Was Not Alone

Everyone is different in their own special way and most of us are able to embrace what makes us different. Whether it is a unique laugh or a quirky personality, we try to love the things that make us unique and make us who we are. But, what if what makes you different is difficult to embrace? What if most of those around you think your differences are weird? This is what it is like to be diagnosed with a chronic illness like T1D. Suddenly, you are different and you did not ask to be. Suddenly. NO ONE understands you, no matter how hard you try to explain yourself. Suddenly, those who love you the most are at a loss and do not know how to make you feel better. Suddenly, though you are still you, you are not you anymore. Suddenly, you are alone, or so you think. I was alone.... until Friends for Life.

October 26, 2015, my diagnosis day, I took to the DOC (Diabetes Online Community) for support. Upon looking up hashtags on Instagram and joining many Facebook groups, I was able to realize that there are many people out there who are walking the same walk that I am. I am SO thankful that I became part of the DOC because I made many online friends and connected with my local JDRF chapter. But, something was still missing. I still had yet to spend any time with anyone else living with T1D and even though I was part of online groups of thousands of PWD (people with diabetes), I still felt alone.

In one of the many Facebook groups I have joined, I came across a thread about an event called Friends for Life and everyone seemed beyond excited to attend. I decided to Google this event and to my surprise, it was very close to home in Orlando, FL. I applied for a scholarship through the Diabetes Scholars Foundation and was blessed to be awarded a scholarship to attend. Let the planning begin.... I had NO CLUE what I was in for.

Upon arriving to Orlando World Center Marriott, I was greeted with open arms. We went right over to registration where I was given a green bracelet and my mom was given an orange bracelet. Those who live with T1D wore green and those who love someone with T1D wore an orange bracelet. As soon as I was outfitted with my green bracelet, I felt like I was part of some sort of club and it was so exciting to see others wearing a green bracelet. The first thing on my agenda after registration was to find Morgan. I met Morgan online about a month before the conference and little did I know she would become one of my best friends in just a few short days. Once Morgan and I met in person, we were practically inseparable the entire week, it was a match made in heaven.

Along with Morgan, I made many other friends during the week as well. I met Michelle, who I had followed on Instagram for a while. Michelle and I both live with multiple complex illnesses aside from T1D, so it was SO nice to spend some time with each other. I also met Danielle and Emma who are both around my age as well. The DOC is fairly large and I get friend requests daily from people all over the country who either have T1D or have a child with T1D. I met so many of my Facebook friends during FFL! We attended a young adults dinner and it was so neat to be in a room full of people my age living with T1D.

Friends for Life is largely about making new friends and connections but, there is MUCH more to gain from this experience as well. One of my favorite parts of the week was the exhibit hall. The exhibit hall was full of different vendors. I got to take a look at different products like Pump Peelz, GlucoLift, and SpiBelt. I got the opportunity to speak to the people behind organizations like Beyond Type 1, The Diabetes Scholars Foundation, and The Diabetes Research Institute. There were also vendors set up for many different devices such as pumps, meters, and CGMs, available to people living with T1D. My favorite part of the exhibit hall was getting to put my hands on the iLet Bionic Pancreas and speak to the brilliant minds behind it. This technology seems very promising and will hopefully take away some of the burden of living with this disease. 

Another thing FFL offers is educational and support sessions. I attended sessions on seeking accommodations in college, having a career in healthcare, managing sick days, dealing with burnout, dealing with complications, and so much more. My mom had the opportunity to attend sessions on positive caregiving and sending a diabetic child off to college. During these sessions I also got to meet some people who have done things like drive a race car, compete in American Ninja Warrior, and make it to the top on the Voice and American Idol, reminding me that there is nothing that I cannot do. There is so much value in these sessions, especially for someone who is newly diagnosed. 

Oh, and I also should add that ALL of the food is carb counted.... that in itself is magical.

All in all, FFL was the most amazing experience ever. For the first time in 9 months, I felt "normal". For a week I did not have to explain myself, I did not have to deal with stares, and I did not have to feel like a weirdo. For a week I could laugh about a high blood sugar instead of cry, I could test my blood sugar and have others right beside me doing the same thing, I could wear my devices proudly and have a whole group with me doing the same thing, and for a week, I could just be me. Thank you Diabetes Scholars Foundation for this opportunity and thank you Children with Diabetes for making such a difference.

-Ashlyn

3 Months on OmniPod: My Thoughts So Far

3 months ago today, I took a giant leap of faith and started the OmniPod Insulin Management System. Prior to starting OmniPod, I was doing multiple daily injections (MDI) and in my 6 months since diagnosis, I had taken approximately 1080 injections. I am not scared of shots (thank goodness) and doing injections did not bother me too bad, but I was ready for a change and something a bit more convenient. For those of you who do not quite understand T1D, here is a little summary on how my day went on MDI as compared to my days on the insulin pump.

MDI
Before every meal and snack: I would test my blood sugar, count carbs for the meal or snack, calculate the amount of insulin needed to correct my blood sugar (if it was over 140), calculate how much insulin I needed to cover my carbs, add these numbers together, and take the closest amount of insulin to this number as possible. Problem was, on injections the smallest increment I could dose in is .5 unit, so many times I could not take the exact amount of insulin I needed.
2 hours post meal: I needed to test my blood sugar, if above 180 (which happened often on MDI), correct with another injection, if below 100 (which also happened often on MDI) correct with more carbs and test 15 minutes later.
Before driving or exercising: I would always test my blood sugar, if below 120, correct with carbs and wait 15 minutes to leave or start exercising.
Before bed: I had to inject the dreaded long acting insulin Lantus (it BURNS so bad). Lantus was the long acting insulin I took to help keep my blood sugar steady all night long and between meals. Also before bed I would check my blood sugar, correct if high (over 180) or eat if low (below 120 was "low" before bed on MDI).
Middle of the night: On MDI, I had such anxiety about going low in my sleep and not waking up (even with a CGM, its not always accurate). I almost always set an alarm at 2 am to wake up and test.

OMNIPOD
Before every meal or snack: The PDM (remote control for my pump) is programmed with settings tailored specifically to my needs. Before eating now, I test my blood sugar, count my carbs, and the PDM does the rest. I tell the PDM what I am eating and it will calculate how much insulin I need based on my blood sugar and carb counting. I press a few buttons, and it administers the insulin. It calculates down to the .05 unit so I am MUCH more accurate in my dosing. I can also get seconds and just dose for more if I want more food, on MDI this would require another injection.
2 hours post meal: I still test my blood sugar 2 hours after eating but now if I am slightly high after a meal, the PDM will calculate how much insulin I need for that and administer it. My blood sugars are MUCH better on the insulin pump.
Before driving or exercising: I usually prefer to be above 100 now so if I test and I am hovering close to 100 or dipping low, I will simply eat a small snack and set a lower temporary basal (steady drip of insulin I get 24/7).
Before bed: NO MORE LANTUS! I simply test my blood sugar and eat a small snack if I need to.
Middle of the night: I actually try to sleep through the night most nights now! The pump is programmed for me and I have told it what times of the day I am higher and need more basal insulin and what times of the day I am lower and need less. I have my pump set to administer slightly more insulin from 10PM-12AM and slightly less insulin from 12AM-6AM. This prevents middle of the night highs, followed by a correction, followed by a low at 2am, which was usually my pattern on MDI.

All in all, its easy to tell that pumping with OmniPod does make my life a little bit easier. BUT, it is important to read my summaries above and understand that the pump is NOT a cure. I still test my blood sugar 10-12 times per day, I still count my carbs, I still have highs, and I still have lows. The pump just helps make my life with diabetes a little less complicated and a little bit easier. Here are some pros and cons I have found while using an insulin pump and more particularly, the OmniPod.

Pros:
1. LESS pokes! Obviously, on MDI, I poked myself all day. I took about 6 injections per day and tested my blood sugar 10-12 times a day, so that is 16-18 pokes per day. With the OmniPod, I only have to change my site every 2-3 days so that eliminates shots and just leaves finger pricks.
2. Better accuracy in dosing. I am super sensitive to insulin and take very small amounts. On MDI, I sometimes had to skip injection for a meal because it was not enough carbs for what .5 unit would cover but then I would go HIGH with no insulin to cover my meal. With the OmniPod, I can dose for 1 single carb if I want to, it is that precise.
3. Temporary basal settings. On MDI, I injected my basal at 10pm every night and it was done, I could not make the basal stop working if I was going low or make it work more if I was going high. With the pump, it eliminates the need for 2 separate formulas of insulin and only gives fast acting. If I am running low or getting ready to be in a situation where I always drop (exercise, heat, swimming), I can set a temporary basal so my pump will give me less basal insulin. If I am having a high day, I can simply set a temporary basal for more hourly insulin until I come back down into range.
4. Easier mealtimes. There was soooo much math involved in MDI. I had to always have a calculator and a notepad any time I ate so that I could write everything down and do the adding, subtracting, multiplication, and division. The pump takes over the math for me, now all I have to do at meals is count my carbs, test, and tell the pump. Its also nice not to have to pull out an insulin pen and needles or a syringe and a vial to draw up my insulin before eating.
5. Freedom. This is more directed towards the OmniPod in general as compared to tubed pumps but the OmniPod gives me SO much freedom. Choosing a tubeless pump was the best decision I could have made and I love not having to ever disconnect from the pump because it is stuck to me and it is totally waterproof. I have the freedom to wear what I want and not worry about where I will put my pump and tubing.
6. Easy site changes. Before I started pumping, I watched countless videos of people changing their sites for every pump imaginable. Most videos for tubed pump site changes took about 10-15 minutes. I can change my site in about a minute and 30 seconds of that is the pod priming itself.
7. Pod decorating. Okay, this is another OmniPod specific pro but I love decorating my pods! Below is a picture of all of my pods from the past 4 months. It makes diabetes SO much more fun!

Cons: 
1. Another attachment. I was not too excited about having something else attached to me. I already wear a Dexcom CGM so having something else attached, took some getting used to.
2. Pod failures. This is a PAIN. When a pod fails, it makes an obnoxious noise and wont stop until you tell it to. But, a pro of this compared to other pumps is that it will usually alarm before my blood sugar is sky high. I would rather find out the pod failed by an alarm than by a high BG, feeling yucky, and ketones.
3. Large PDM. The PDM is MUCH larger than the meter I used on MDI and it takes up much more space in my bag.

So, as you can tell, I obviously do not have too many dislikes for the OmniPod, it has truly made my life so much easier and I am pleased with my decision to go with this pump. If you are considering getting an insulin pump or replacing yours with a new brand, I highly recommend trying a demo kit from OmniPod. They will send you a demo pod to wear for 3 days and you can see how you like it. OmniPod customer service is the best! Once I contacted OmniPod and let them know I was ready to get started, they took it from there. My local rep, Inna, went to my doctor and got all of the appropriate paperwork signed. Within 3 weeks of contacting Inna, I had the OmniPod and I was sitting in training. I love being a "podder" and I would not have it any other way!

-Ashlyn

Links:

https://myomnipod.com/

Reminding Myself That It’s JUST a Number

When I was diagnosed with type one diabetes, I was taught all about carb counting, insulin dosing, finger pricking, and the big one…. blood glucose target ranges. My diabetes team set what they called my “target range” and I was expected to do all that I could to stay within those lines. Anyone who knows me knows that I am a perfectionist and that I like things done the right way. My first few weeks on insulin were very frustrating as my body adjusted and as I better learned how much insulin I would require. I remember being so upset every time I saw a “bad” number. Every number outside of the 70-180 range (my target range at the time) would make me wince and I would make myself crazy trying to figure out what I had done wrong.

 My first month or so was spent beating myself up for every “bad” number that showed up on my glucometer. I was slowly becoming whatever my blood sugar was and something had to change. The more I did research and the more I began to understand the nature of T1D, the more I realized that I cannot be as precise as my pancreas once was. Manmade insulin does not work as well as the insulin my body is supposed to produce and I cannot expect to have perfect numbers. There are no “bad” numbers, there are only low and high numbers. Something else I had to learn to realize is, much of the time I did not do anything wrong to get a crazy number. 

 This new mindset has taken so much stress out of my day to day life with T1D. I take each day as it comes, I manage the best that I know how, I celebrate the smooth days, and I celebrate the roller coaster days because I am strong enough to survive them. No matter how much my doctor may nitpick my blood sugars at my visits and no matter what comments others may make about my diabetes management, I am not defined by what my blood sugar was/is yesterday, today, or ever. Fact of the matter is, T1D has a mind of it's own and the best I can do is use the tools I have to manage it as well as I know how. I am tougher than I ever thought I could be and that means much more to me than a silly number.

-Ashlyn 

Let Me Introduce Myself  

Who am I?

I am Ashlyn and I am a 20 year old college student. I am a follower of Christ, a future physical therapist assistant, a medical mystery, and a lover of all things Disney. Oh, and I have type one diabetes (T1D).

What is T1D?

Type One Diabetes (T1D) is an autoimmune condition where the immune system attacks the insulin producing cells of the pancreas. Insulin is a hormone that converts glucose to energy and without it, the glucose sits in the blood stream and builds up. Nothing I did or didn’t do could have caused or prevented T1D and I will be insulin dependent until there is a cure. I manage my diabetes with frequent blood glucose checks and dosing insulin via an insulin pump which I wear 24/7.

Why blog?

I have journaled my journey with T1D since day one and I am the only one who ever reads what is written. When I attended the Children with Diabetes Friends for Life International Conference, I met so many young adults who had blogs and I was hooked, I realized all that I was journaling needed to made into a blog. I want this blog to be a place for people with T1D to come and relate but I also want this to be a place where my family and friends, near and far, can keep up with me and learn more about my new normal.

Why “A Trail of Test Strips”?

My non-T1D readers may not understand the name so let me explain. People with T1D have to test their blood glucose levels 8-12 times per day, which leads to lots of trash. Test strips are tiny and do not always make it to the trash when I test, actually they NEVER make it to the trash. I always joke that if I ever go missing just follow the trail of test strips and you will find me. 

 Follow me and my trail of test strips as I attempt to figure life out as a young adult woman with big dreams, a bum pancreas, and little extra sugar in my blood.

-Ashlyn