Tuesday, March 27, 2018

Your A1c Does Not Equal Your Worth

As a moderator on the Beyond Type 1 App, I see a lot of different things every day. I see people excited about a perfect line on their graph, people ranting about their day, and people uplifting one another. But I also see a large amount of people beating themselves up over their A1c.

I see people with great A1cs so disappointed in themselves, and people with not so great A1cs feeling like giving up. You see... as people with Type 1 Diabetes, we’re trained to think of our A1c result as a report card of sorts. 

But we all know how many factors can play into blood sugars. I’ll leave this graphic by Adam Brown below so you can have a look. 

That being said, if your A1c isn’t perfect (and I truly believe there is NO perfect A1c), that does not make you a failure. That does not make you a “bad” diabetic. That does not mean you didn’t try. 

Actually, more and more data is coming out showing that A1c is no longer the greatest predictor of diabetes health. I’m going to use myself as an example. For years I had blood sugars on a 24/7 roller coaster. I’d go really high, then drop really low, then bounce up really high again, and the cycle would continue. Yet because the median of these numbers is somewhere in the middle, my A1c looked good. But in NO way was my diabetes health good. I was definitely not a model patient. You wouldn’t know that by my A1c, though. 

The following are some excerpts from an article of Chris Kessler’s called "Is A1c the Best Measure of Success?"

Red blood cells don't survive the same amount of time in everyone. The A1c measures the sugar that has accumulated on red blood cells but if someone’s red blood cells only live 2.5 months and another persons live 4 months, the latter may have a higher A1c level just because there was more time for sugar to attach to their red blood cells which simply hung around longer.
Conversely, in a person whose red blood cells don’t last 3 months, due to something common like anemia, an A1c result will report a false low because the red blood cells didn’t have as much time to collect sugar.”

He also elaborates on what I was talking about in my personal situation, “If you have an A1c level of 7 percent, this could mean that you are regularly around 154 mg/dl (8.5 mmol/L). If this were known to be true for you, your healthcare provider would know that you are safely avoiding low blood sugar episodes as well as very high blood sugar.
The reality is however, that when only looking at an A1c level, it isn’t known if a 7 percent is made up of consistent blood sugar levels or perhaps an average of many low and high blood sugars. If a healthcare provider only goes on that A1c level alone and they want to “improve” it by lowering it, then someone who is already having some low blood sugar episodes would be at risk for more.
Of course, this is why healthcare providers get as much data as they can including asking patients to log their blood sugar levels as well as their notable daily symptoms. They are looking for a better picture to fill in the blanks left behind by the A1c.” 

A great graphic by OneTouch.

So diabuddies, please don’t beat yourself up for what you think is a bad A1c. Look at all these factors that can affect your BG that you have no control over. Don’t let that number get you down. As long as you’re trying your best, and occasionally allowing yourself to cross some limits, then you’re doing a great job. Everything in moderation.

Diabetes is a beast to manage for all the reasons listed above. It has a mind of its own and will wreak havoc without rhyme or reason. You should be proud of yourself just for keeping yourself alive. You deserve way more than a medal. Because you didn’t ask for this, but here you are making it. Even if your number isn’t what you’d hoped, you are doing an amazing job living with this 24/7 job. 

So keep it up, warriors. If your A1C is out of whack, as long as you’re doing whatever you can, with the help of your endocrinology team, to get things stabilized, then you’re not failing. You’re trying, and you're doing your best. 

And those of you who are going for that perfect number, it hurts me to see you being so hard on yourselves. For all the reasons above and far  more, that number does not represent your worth. The fact that you care is a great thing, but don’t let it keep you down if your report card isn’t perfect. It’s likely largely due to reasons outside of your hands, and many of the blanks that an A1c leaves out. You are doing a much better job than you think you are.

Thursday, March 22, 2018

Decorating Diabetes

I’m going to jump right into this. Now let’s talk stickers, because you know I love my stickers! I don’t think I could go for long leaving my devices ‘undressed'.


I'm going to start off with one that's not mine, it's my mom's. It's a custom Dexcom sticker from Pump Peelz,  And Big is looking pretty snazzy if I do say so myself. (YES YOU CAN PUT YOUR PET ON YOUR DEVICES)

We'll continue with some of the stickers that I myself got from Pump Peelz over the last year or so.

My amazing Christmas stickers.

A custom Peelz I made.

Pump Peelz courtesy of Beyond Type 1 featuring 'The Drop'.

Some shiny Christmas Peelz for my Bayer Contour Next. 

Pump Peelz in 'Ikat'.

These next stickers are from all the way from Germany, from a website called Pep Me Up.

'Cat' sticker, which I'm currently wearing.

'Cactus' sticker.

'Flower Power' sticker.

'Flower Power'screen protector'


My Myabetic Banting Wallet in 'Paradise Blue'.

My latest addition, Myabetic Banting Wallet in Lavender.

My Myabetic Brandy backpack in Copper. (Big is a Myabetic fan)

My 'but first, insulin' case from Casualty Girl.

A gold case from Chapters/Indigo.

I hope this gave some of you a little inspiration for you owns supplies!

Tuesday, March 13, 2018

Class Surprises 7 Year Old On 5th Anniversary of Her Diabetes Diagnosis

7 year old Addison has had Type 1 Diabetes since she was 2. In case you don’t know, Type 1 Diabetes is an autoimmune disease where the immune system mistakenly attacks the beta cells in the pancreas that produce insulin. We all need insulin to live, and without it, we’d die. So Addison wears an insulin pump called the Omnipod that delivers insulin into her body. 

People with T1D call the anniversary of their diagnosis their ‘diaversary’. Why? Because we celebrate all the years we’ve spent keeping ourselves alive and all the hard work we’ve put into it! 

On February 28th, it was Addison’s 5th diaversary. It was a normal school day, but when she arrived, she quickly found out that this day would be anything but normal. She started out her morning receiving gifts and cards from her classmates, but it didn’t end there. Mom Sarah had a friend who works for Omnipod, so she kindly donated some demo pods with no real needle. Well what kind of way to feel more supported than have your whole 1st grade class, teachers, kids from other classes, and other staff all wear demo pods for the afternoon! And they weren’t forced into this, they were so excited to put them on that they decorated theirs to be just as cool looking as hers! The love was overwhelming, and as you can see from the photos, Addison’s smile was huge. 

They celebrated with cupcakes, balloons, and she was made to feel so special. This overwhelming story of acceptance and understanding from the whole school of a child with Type 1 really pulls at the heartstrings. Addison could not contain her joy that day, and that’s how every kid should feel on their diaversary. 

Side note: Amazing that these kids will be aware of what Type 1 Diabetes is at such a young age, all because of Addison. 

Monday, March 12, 2018

FreeStyle Libre: Review 5 Months Later

Photo from https://www.diabetesselfmanagement.com/

It’s been 5 months that I’ve been wearing Abbott’s FreeStyle Libre, and I wanted to do an updated review as I’ve had more time with it. So the question, am I still in love with it? Yes.  I recently went a week without it, and while it was able to live without it, I didn’t like living without it, and couldn’t wait to get it back on.

So as I’ve talked about before, I have extremely sensitive skin. When I trialed a pump, I had a skin allergy to the adhesive, and the same happened with the Dexcom. I can say with the Libre I have no itching. When I take it off, the look of my skin under it varies. Usually it looks pretty good. Occasionally it’s a bit red, but it heals in a day or two.

How well does it stick for me? Incredibly well. Everyone’s skin is different, but for me this thing sticks like a magnet. The adhesive around the edges lifts, but the sensor itself stays stuck and I have to carefully peel it off after the 2 weeks.

Accuracy? Out of all the sensors I’ve used, which is 1 every 2 weeks since October, I just had my first faulty sensor. It was 7 days in and the numbers compared to my meter were way out of range. So I had to change it. But other than that one incident, it’s been in range and very close to the numbers on my meter. The particular sensor I’m wearing right now is so accurate. So faulty sensors are out there, but in my personal experience, I’ve only had one, and the rest have been within range and I’ve treated based on those numbers.

I hope this has been helpful to anyone curious about the Libre or others experiences with it!

Tuesday, March 6, 2018

Discovery For Sore, Tight Muscles

My dad ran the 10k at RunDisney this year, raising money for Children With Diabetes. While we were nervous for him (he is NOT a runner), he finished it and we were all really proud of him.

At RunDisney, there is a HUGE exposition hall, with all sorts of gear for runners and athletes. The first station I stopped at was The Stick. I saw a guy sitting down basically getting a foot massage with this rolling thing. So naturally, I stopped and ask what this thing was. The kind woman working at the booth showed me how it works, as she rolled it over my calves, my back, my neck...

And it was love at first sight. With Stiff Person Syndrome, certain muscles of mine feel tight a lot of the time. And this magical stick just felt like heaven when I rolled it on those tight spots.

I’ve continued to use it (click this link to see mine) over the last month and  it rarely fails to feel good. I know a lot of people use foam rollers, but I was shocked that I had never heard of this, or seen The Stick on any gift lists for people with chronic illnesses! Because well... what a discovery!

They also were kind enough to provide me with one of their Trigger Wheel. This can feel so good on people who get chronic headaches like I do.

They wanted me to really test them out before writing about them, but my viewpoint stands the same; it never fails to feel good. No side effects, no catches, and absolutely worth the price. As a matter of fact, my mom makes me share it with her and I find her coming into my room all the time asking where it is! Your own personal massager that can reach everywhere. That’s how I see it, even though it can be so much more, especially for athletes. But from a chronic illness standpoint, it provides some relief and sometimes that’s all we can hope for.

Sunday, March 4, 2018

T1D Faces of the Month

Marie is a bright-spirited 22 year old from Austin, Texas. When she was 4, she was acting upset and irrational, so being in school to become a PA, her mom used her Type 2 diabetic grandma’s glucometer to test her blood sugar. They took her to the ER and caught it early enough to prevent DKA! Attending a diabetes day camp every summer for 13 years really shaped her outlook on life with Type 1. Now she is hosting the Austin chapter of Type One Run! She has been using the Omnipod insulin pump for over a decade! She is surrounded my support from her family, but her biggest supporter’s name is Amy McKinnon, a fellow T1D that she bonded with in Australia. From thousands of miles away she is always encouraging her. Last but not least, she gets love from her shih-tzu Bella who just turned 10. Marie says that a positive that has come out of Type 1 are the friendships she’s made. She says, “I’m overwhelmingly thankful to be loved by and to love so many people who lack functioning beta cells.”

Adam Rudick, at 25 year old, is a dedicated volunteer and advocate from Montreal, Quebec. At 11 years old he was told he just had a weak bladder, only to go on a trip to New York where his symptoms hit an extreme. Luckily, his dad had a friend there who is a doctor, and after testing his blood sugar on a meter, it was so high it wasn’t readable! They cut their trip short and headed home to Montreal, where he was diagnosed at the Montreal Children’s Hospital. He attended a diabetes sleep away camp called Camp Carawanis and says he had a blast and would recommend it to anyone in the area. Currently a volunteer at JDRF on the Community Engagement Comittee, he is always attending conferences from Medtronic (he uses the Medtronic Minimed), and JDRF Research symposiums because he loves learning about upcoming research and technology. He calls his girlfriend Mel his biggest supporter, and says one of the positives that has come out of diabetes is “The mental, physical and emotional strength that is built from managing it on a daily basis.”

14-year-old Laina Wilderman from Illinois is raising her voice by making videos on YouTube. 2 years ago, she started drinking water excessively and peeing all the time. These were familiar symptoms to her parents, as her grandpa has Type 1 as well. They took her to the doctor where they found she had ketones. They went straight to the hospital where her blood sugar was 360mg/dl. After a few days in the hospital being taught how to manage her new illness, she went home feeling like she got an overload of information. She loves her Dexcom and has tried two different insulin pumps, but in the end loves her Omnipod. Her biggest supporters are her parents, her YouTube subscribers, and of course her 2 cats, Lilly and Blackie. Support her YouTube by clicking this link: https://www.youtube.com/channel/UCd_xtBoZWbDoFhDKNokbanA

Laird Morris is a 58-year-old happy chap from a small village in rural Essex, in England. His sister was diagnosed with Type 1 while on vacation in the summer of 1975. He started to become progressively unwell the following winter. Though his sister recognized the symptoms, she didn’t want him to have diabetes also, so for months she held off testing his urine. His teachers at school noticed he was unwell, but didn’t have knowledge of Type 1 Diabetes. In February of 1976, his sister became more concerned and tested his urine, then immediately took him to their GP. His GP arranged for him to be admitted to the local hospital for 2 weeks learning about how to live his new life with Type 1. He wasn’t involved in any diabetes-related activities until recently, when he attended a DAFNE education course which he found super helpful. He is not on an insulin pump and uses MDI (multiple daily injections). He believes that everyone has inner strengths of which they are largely unaware and that living and prospering with diabetes makes finding these strengths an imperative. He says, “Some people think that diabetes makes them strong, whereas I think that diabetes can act as a catalyst that drives us to discover that we are strong and resourceful.”

4-year-old happy, go-lucky, warrior Luciano (aka Nano), from Miami, Florida, was minutes away from a diabetic coma when he was diagnosed at 11 months old. He had caught the Adeno virus, but never recovered. After days in and out of Urgent Care, the ER, and his pediatrician, he was reassured it was just an upper respiratory infection. Well that night, he was pale and lethargic and his mom knew that something else was wrong. She rushed him to the ER where he was finally properly diagnosed just in time to save his life. He is now on multiple daily injections. Mom Ariana got them involved in the diabetes community right away. Between JDRF and The Diabetes Research Institute, they’ve raised about 6000$! Ariana started a blog on Facebook (@myt1dbaby) in hopes of raising awareness and helping recently diagnosed families. Their family includes mom, dad, and Nano’s 16 year old big sister, and 10 year old big brother. Together they are each others biggest supporters, and this has only brought them closer together. Nano also loves sharing his food with their chihuahua Felipe, which mom sarcastically says makes carb counting “so much fun”. Nano is fearless, and their family tries to have as much fun as they can while coping with this disease. Mom says, “He gets it and he is proud to say, he has ‘Dia-beadies.’”

Do you want to be featured next month? Contact me!