10 Kids Thriving with Type 1

After meeting some of the coolest kids ever during the conference in the summer, and after being introduced to some of them by social media, I knew I had to write this article. They are brave. They aren't fearless, but they face their fears. They show Diabetes who's boss, even though they're pint-sized.

Mason

Mason, who just turned 7, was diagnosed with Type 1 when he was 3 years old. His mom and dad help him raise awareness on Instagram and Facebook by sharing their Type 1 journey. He and his mom actually made an awareness video on Facebook that pulled in 50,000 views! He even takes time to educate his class at school by showing comic book slides made by his momma.

It was the 4th of July when Mason ate an entire bowl of tortilla chips and mom’s first instinct was that he has diabetes. She took her to the doctor, who ignored her suspicions, despite her insisting on testing. By the next day, he couldn’t even hold his head up, so he was rushed to the ER where he was diagnosed within 30 seconds.

His favourite things to do naturally include fighting with his little sister, going to parties, playing video games, drawing and swimming. When his blood sugar goes low, his favorite snack is cotton candy because it melts so quickly in his mouth! Never thought of this, so smart!

I asked Mason if he could tell the whole world one thing about Diabetes, what would it be?  He says, "You do not get diabetes from eating sugar. Also I can do anything other kids can do, and maybe even better!"

You can follow him on Instagram @1mightytype1family.

Jalaeny

9 year old Jalaeny was diagnosed 4 years ago, at age 5 with Type 1 Diabetes. 

During her kindergarten year she began to wet the bed. Her mom started limiting her liquids around bedtime, but she would still beg for more. During a short 15-minute grocery trip, she had to use the bathroom twice! Her mom brought her into the doctor and right away they tested her blood sugar... it was 560 mg/dL/31.1 mmol/L! 

Jalaeny loves to have fun making slime, and making music videos with her friends. She's plenty busy with fundraising and fun with Type 1 Diabetes friends. She does the JDRF walk, goes to Diabetes camp in the summer, and attends the Children's with Diabetes Friends For Life conference in the summer. When her blood sugar goes low, she likes to snack on Starburst! She's proud that she can do anything anyone else can do, with the help of her Dexcom and Omnipod!

I asked Jalaeny if she could tell the whole world one thing about Diabetes, what would it be?  She says, "If I'm at a birthday party I can have a piece of cake!"

You can follow her on Instagram @mrs._fred.
 

Elise

10 year old Elise is a pro at T1D.. she was diagnosed 2 days after her first birthday at her 12 month check up! Her family does the JDRF walks in multiple cities (Dallas, Lisbon, Toronto and NYC), and she goes to Lions camp. She's also part of the Bionic Pancreas clinical trial. When her blood sugar goes low, her favorite snack are Hi-Chews, and some of her favorite activities include reading, writing, playing soccer, and playing with her American Girl doll. 

She is super proud to be the youngest kid to try the Bionic Pancreas in 2014. Not only that, but this year she published her own book at the age of 9! 

I asked Elise if she could tell the whole world one thing about Diabetes, what would it be?  She says, "That you can do anything, even if you have it..." 

You can follow her at www.teamelise.com. 

Logan 

10 and a half year old Logan has quite the impressive resume. After his MMR Vaccine he was sick with a fever for a few days. Shortly after, he started drinking a lot of water, and he was barely eating. He was also sleeping in in the mornings, so that was their sign to call the pediatrician. Luckily, they have a great medical team who recognized the symptoms right away. 

Diagnosed at only 17 months, he has thrived with Type 1 in amazing ways. Again, at 10 years old, these are all the things he’s fundraised for: Friends for Life, Riding on Insulin, JDRF Promise Ball, JDRF 5K Endurance Team, Beyond Type Run 5K. This past year, it was also because of Logan's initiative that everyone at the Friends for Life conference got Mickey Bars! He also says he’s a Beyond Type 1 Bike Beyond groupie. I say he's a go-getter.

This guy’s got a lot of hobbies. He collects coins, baseball cards, stuffed animals, stamps, Disney pins, hot wheels, and many more. He also likes Monster Trucks, Lego, art, traveling, biking, and lots of stickers! When he goes low, his favourite snacks are cookies, but most of the time mom makes him have juice.

Logan is proud that we have a Type 1 community and he's not just a “lone dog”. He also says he’s proud that he’s able to fundraise and help educate his family and friends.

I asked Logan if he could tell the whole world one thing about Diabetes, what would it be? "I want the world to know what it is so I don’t have to explain it to people all the time and then everyone can help find a cure."

You can follow him on Instagram @elbowbumpkidsmom.

Brenley 

3 year old Brenley is quite the little force. She was diagnosed with Type 1 at just 2 1/12 years old. Brenley’s parents knew something was wrong. Red flags started popping up. She was potty trained at 21 months but she kept having accidents, which wasn't like her at all. Then quickly came the extreme thirst and the dark circles under her eyes. 

Brenley is 3, and will be turning 4 November 7th. On April 14th, 2016, her mom took her to her pediatrician and expressed her certainty that she had Type 1. Labs were taken, and then came the call… she had a glucose level of almost 600 mg/dL/33.3 mmol/L, and they rushed her straight to the children’s hospital.

Little did they know the 7 months later they’d be hit with another curveball. Brenley was diagnosed with cancer. A Stage 3 Rhabdoid Tumor of her left kidney. She just completed her treatment, and in the near future they’re looking forward to taking part in a bunch of Diabetes and Cancer events.

This sassy girl is “absolutely obsessed” with Bruno Mars. It is how they got through mostly everything in the last year. They listen to his music almost all day and she loves having dance parties. When Brenley's mom asks her what she's most proud of, she says "I'm stronger than anyone!"

She’s discovered her favourite low-carb snack; organic cucumbers and baby carrots with Greek yogurt ranch dip. Sounds good to me!
 
I asked Brenley if she could tell the whole world one thing about Diabetes, what would it be?  She says, "I would want them to know how it feels to have a low blood sugar." 

You can follow her on Instagram @type1.brenley. 
 
Tre

You don’t want to mess with 8 year old Tre, he’s a karate pro! Only 2 weeks after turning 5 on April 7th, 2014, Tre was diagnosed with Type 1 Diabetes. He had a few symptoms like fatigue, thirst, and frequent urination, but they were cleared (and obviously misdiagnosed) by the doctor, so they were given the go ahead to go to Florida for vacation. The second day there, mom Melinda knew something wasn’t right and took him to the ER. Turns out he had a blood sugar of 879 mg/dL/48.8 mmol/L, his a1c was 13.9%, and he was in severe DKA! Mom knows best.

Tre is captaining for Beyond Type 1’s Power Up 2017 campaign, and this year they just walked in their 4th JDRF walk, which is always a fun day for them. Tre’s family participates in many online campaigns to support T1D awareness, and loves connecting with other families. Next up on their to do list… Diabetes camp!

Apart from loving Karate, some of Tre’s favourite things to do are playing Minecraft and building Lego masterpieces. His favourite low snack is snack apples and peanut butter, and he says that what makes him proud is “Breaking boards in karate makes me proud because it's kind of hard, but I did it!”

I asked Tre if he could tell the whole world one thing about Diabetes, what would it be?  He says, "I would want the world to know that it's not the best and it's hard sometimes, but type 1 diabetes makes you strong and brave. In time, it gets a little easier to deal with." 

You can follow him on Instagram @melinda_t1dmom.

Eva and Leah 

Eva and Leah are Type 1 twins! Having just turned 2 in September, the girls, and their parents sure are fighters! Leah was diagnosed first. She was 10 months old when she went into DKA and came close to losing her life. Only 9 months later, they tested Eva’s blood sugar and were able to catch it before she got really sick.

As a family, they do the JDRF One Walk, and in the summer, they attend the Children With Diabetes Friends For Life Conference.

In their spare time, they love to jump on things. We might have little chefs on our hands because they love to cook in their play kitchen. They also love to play dress up and color.

When their blood sugar goes low, their favorite snack is cookies. I asked what makes them proud and dad Geordan told me at the moment it was putting on their own socks and doing things for themselves.

I asked Eva and Leah's parents,  "If they could tell the whole world one thing about Diabetes, what would it be?  They said, "Diabetes is an epidemic, it could happen to anybody; especially Type 1.  We need more research on this disease."

You can follow them on Instagram eva_rose_leah_skye.
 
Henry

Henry is a feisty 10 year old who was diagnosed in 2013. He was diagnosed on February 7th, the same day as one of his favourite people, celebrity chef Sam Talbot was diagnosed! He was going to the bathroom a lot. Then one night he ate pizza and he was up peeing and drinking all night! In the morning, he told mom Sara that he didn’t want to go to school and right away she knew there was something wrong. So she brought him to the hospital and that day he was diagnosed with Type 1. Henry thought that he was going to lose his legs because of it, since he only knew about someone with Type 2 who didn’t take care of themselves.

Henry fundraises for Beyond Type 1, and he says it’s because of this; “They give 100% of the donations back to do things like help kids who are new to Diabetes and just want to get out of the prison the diabetes can make you feel like you are in.” This is part of the reason he loves helping his mama out with her Beyond Type 1 work. He says that Type 1 Diabetes camp is best for kids who don’t know anyone with Type 1, but that he knows a lot of kids with T1D, so he didn’t like it very much.

Some of his favourite things to do are to swim, draw, read, write, and to taekwondo. He got asked what makes him feel proud and his response was “I don’t know what makes me feel proud. Maybe I always feel proud so I don’t know when it’s happening.” Smart kid!

I asked Henry  "If you could tell the whole world one thing about Diabetes, what would it be?"  He said, "I want the whole world to know that no one needs to be afraid, its just something that happens and there are people like me that can help you feel less scared."
 
You can follow him on Instagram @sarabeejensen or @herculesandhenry.



  Isabella

7 year old Isabella (or Isa for short) was diagnosed only 2 weeks before her second birthday, on August 28th, 2012. Mom and dad started noticing some of the classic signs of T1D (thirst, wetting the bed, etc.), then one day her teacher sent a note home asking them to send in a bottle for her because she was always asking for something to drink. It was an immediate red flag, so they took her to the pediatrician, who recognized the symptoms right away and did a urine test.

Isa loves getting involved in the community. She’s a Beyond Type 1 Ambassador and got to walk the stage with Nick Jonas when he received his HERO Award at the Radio Disney Music Awards. She loves going to the CWD Friends for Life conference, and this summer was her 5th year! This fall she’ll participate in her 6th JDRF walk, with a team of over 100 people walking with her! She also had the opportunity to represent North Ohio as a 2015 JDRF Children’s Congress and helped them show Washington was living with Diabetes is like. She's kind of a big deal.

Isa is a triplet, and loves spending time with her brother, Max, and her sister, Mia. She loves playing school even when she’s not in school. You can always find her reading or doing math workbooks. She’s also a brown belt (soon to be black) in Taekwondo!

She loves decorating her pods and showing off by wearing them on her arm and leg for everyone to see. Dad Greg says Isa is a shy kid and doesn’t like to be the center of attention. With a growing social media following, she is proud of herself when her mom and dad tell her that she inspired other people. Now that she’s starting to understand the whole social media thing, she’ll say things like, “Post that pic on Instagram!”

I asked Isa, if she could tell the whole world one thing about Diabetes, what would it be?  She says, “Diabetes can’t stop you from doing anything. You don’t have to stop doing what you like to do a lot.”   

 You can follow her on Instagram @inspiredbyisabella or on their Facbook page, Inspired by Isabella.


Addison

 



7 year old Addison has been at this for a while; she was 2 and a half when she was diagnosed on February 28th, 2013. They were visiting their family out of town at the time, and they called their pediatrician from their hometown, because they starting suspecting diabetes. They were told the signs to watch out for, and the next week they called him back because all of the symptoms were happening. Mom decided to bring her in for them to test her blood sugar. Well, mom knows best, and she was diagnosed that day.

In the past 4 and a half years, Addison and her family have raised over $25,000 for diabetes! Dad Ryan participated in 2 Tour de Cure rides, and they’ve participated in 5 JDRF walks. She’s been attending the Friends for Life CWD conference for 3 years and they plan to attend as long as they can!

Addison loves Pom Poms, swimming, and is a pretty great little gymnast. When she’s not doing sports, she loves playing outside with her friends and building forts with her little brother. When it’s time for a low/no-carb snack, she likes sausage and cheese.

She gets super proud of herself when her blood sugar shows 100 mg/dL/5.5mmol/L on her PDM. She loves school, so she loves seeing smiley faces and stickers on her homework. One of the things she’s most proud of and loves to show off are her pods, because she paints them all herself. Last year her Kindergarten class all painted a pod and gave them to her on her diaversary! I think that's amazing. She gets really excited when her friends wear her pods and show them off to the rest of their friends. 

I asked Addison, if she could tell the whole world one thing about Diabetes, what would it be?  She says, “Diabetes is not easy but it can be fun sometimes. I don’t like having diabetes because sometimes I have to eat when I am not hungry but sometimes I need to eat and I like getting candy sometimes when I have a low blood sugar.”   

You can follow her on her Facebook page Addison's Angels.

10 wasn't enough, so surprise, we have one more!


Maeve

7 year old brave Maeve is also a pro at this, being diagnosed at 18 months old on May 20th, 2012. She was diagnosed in a complete crisis! One Sunday morning she didn’t wake up from her crib. She was in DKA, after 7 visits to the paediatrician and urgent care who kept misdiagnosing her with things like the flu, step throat, etc.

Her family does the JDRF Walk, and also attend the CWD Friends for Life conference every summer for the last 5 years. The family together holds multiple of their own fundraisers for JDRF, the Diabetes Research Institute, and Children with Diabetes.

To treat her lows, she usually used glucose tabs, or ‘glue-keys’, as she calls them. She loves drawing, reading, jumping on the trampoline, and playing flag football. She’s one of the only 2 girls on the team! What makes her proud is doing well in school.



I asked Maeve, if she could tell the whole world one thing about Diabetes, what would it be?  She says, “Don't worry, I am ok. I'm not low all the time!”

 You can follow her on her Facebook Page Brave Maeve.

 ~
These kiddos are my heroes.  

What Is a Diaversary?

"It's your dia-what?!" This is the reaction we get from most people when we tell them it's our diaversary. A diaversary is essentially your Type 1 Diabetes' birthday. Mine happens to be today, October 5th. And in our community, it's something we celebrate.

Why would we celebrate the date we got a life changing disease? Because it's not a celebration of the disease itself, we can all tell you that. It's celebrating another year of living with this monster that we didn't ask for. Another year of pokes and injections or site changes. Another year of dealing with something we don't want to deal with all day every day. Another year of surviving.

It's my 12th diaversary and I don't really remember much from 2005. I have vague memories of sitting in the Diabetes Educator's room and it feeling like school and just wanting for it to end so I could go home. I remember being surprised that I had to give myself my first injection that very night and not impressed. I remember being told not to eat chocolate if my blood sugar went low, because it's high in fat and wouldn't work as fast. And that's about it.

Now, 12 years later, so much has changed. I don't have diabetes-related pictures of myself from back then because for some reason I was ashamed of having it. I just wanted to be like everyone else. Today I can say I'm proud that I've kept myself alive for 12 years. I'm proud that I get to write about Type 1 and educate people who don't know about it. And I'm grateful for the people I've met because of my diagnosis. So today I celebrate being alive (Thanks Banting and Best), the friendships I've made through this community, and the fact that I have the privilege to spread awareness!

You know you have Type 1 when...

1. People can always find you.. because you leave a trail of test strips everywhere you go.  


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2. You hear the word basal, you definitely don't think of basil, the herb.


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3. You've been asked "Are you sure can eat that?"
   
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4. You hate math but have somehow been forced to try to be a mathematician. 


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5.  You get super excited when you see someone else with a CGM, pump, or meter in the wild. ONE OF MY PEOPLE!


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6. You understand the occasional struggle of trying to get blood out of your finger no matter how many times you prick yourself.


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7. You've heard someone say "You have Diabetes? But you're not fat."


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8. You've had the pain of pulling yourself out of a dead sleep to treat a low.


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9. A juice box has saved your life.

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10. Packing for a trip is doubly as hard because you can't forget any medications. Or back ups. Or more back ups. 

11. You've been given a regular drink instead of diet at a restaurant and suffered the consequences.


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12. You have dug through the trash trying to find the nutritional info on the package of something.


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13. You've forgotten whether or not you've given your insulin or not.


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14. Your lancet gets changed as frequently as a lunar eclipse.


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15. You've become a pro at giving injections in a moving vehicle.

16. You have had one test strip left and your meter shows an error.


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17. You've been told that you can cure your diabetes with kale or something along those lines.

 
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18. You get all pumped up when someone knows the difference between Type 1 and Type 2.

           
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19. You’ve given yourself insulin for something you didn’t t know the carbs of and magically end up with a perfect BG.

            
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20. You’ve given yourself insulin for something you don't know the carbs of and failed miserably.

           
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21. You know how tiring it is to live with a life with a disease that is like a full time job, but it’s made you stronger than you ever thought you could be. 

           
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Well Wishes to Florida

I had a blog to post today but I decided to postpone it and just send all my best wishes to those in the path of Hurricane Irma. It just feels wrong to think of anything else. 

For those with chronic illnesses, there are so many variables that can cause issues and there is so much preparing to be done. 

Earlier today, my friend Ashlyn posted this.

"Preparing for a hurricane with T1D is a whole different ball game. As of now, we are riding out the storm at home, but we decided to pack valuables in case we get put under mandatory evacuation. My first priority had to be diabetes supplies. 3 months of insulin pumps, Dexcom sensors, 5 vials of Novalog, 5 Lantus pens, over 1000 test strips, pen needles, syringes, ketone strips, PDM (pump remote)... the list of what it takes to keep myself alive goes on. If our house and belongings were to be seriously damaged, without salvaging what is in this suitcase, I wouldn't not be able to survive. Please keep everyone in this storm's path in your prayers, especially those living with life threatening medical conditions having to evacuate. FL T1D friends, PLEASE pack up your supplies, just in case. You do not want to be stuck in a shelter somewhere wondering if you have enough insulin to make it."

Her words say everything. All my thoughts over the next days will be with her, who is currently evacuating, and to everyone else in the wake of this. I'm wishing for your safety, for your health, and for your homes.

Does my illness define me?

This is a topic widely discussed within the chronic illness community. You'll see people saying  everywhere, "Don't let your illness define you."

You know what? No, my illness doesn't define me, but it is ONE of the things that defines me. But just here is a list of other things that define me:

• My favorite color.
• My favorite TV show.
• My favorite animal.
• The thoughts that go through my mind before I go to sleep.
• What causes I feel passionate about.
• What I like to do in my spare time.
• What kind of characteristics I'm drawn to in a friend.
• The way I react to specific types of situations.
• The little things that make me laugh.
• How introverted or extroverted I am.
• What situations I tend to shy away from.
• How I treat strangers.
• How I treat my friends.
• My goals and aspirations.
• What makes you grateful.
• The people you love.

And then there's the debate. Does my health status go on that list? I'm not sure it absolutely goes on that list. But I can tell you without a doubt that my chronic illness affects almost every single thing on that list. And yeah, that makes it a big part of me in the end.

For example, the things that make me grateful have changed since I became sick. I'm grateful now for things that I previously wouldn't have even known to be grateful for because of my illness. I treat strangers differently now because you never know what they're going through. I do activities in my spare time that my abilities allow me to do. I feel extremely passionate about raising awareness for these causes that I may never have even been aware of had I not gone through this.

A very wise woman named Kerri Sparling, who has Type 1 Diabetes, coined the quote "Diabetes doesn't define me, but it helps explain me." And to me, that's an incredible way of saying it.

I think the phrase "Don't let your illness define you" should change to "Don't let your illness be the only thing that defines you." Because it is inherently a part of us, even if we didn't choose it. But each and every one of us have other things that explain who we are even better than our illness does. And sometimes I do like to choose to focus on that.

Valued Voices #5 - Mike Natter - Brand New Doctor living with Type 1 Diabetes

Hey Mike! Thanks for being here to answer some questions. I’ll start off my letting you introduce yourself.

Mike: Oh boy, that’s a tall order. I’ll give you the short of it. I’m Michael Natter. I’m 31. I’m a New Yorker, and I’m a Type 1 Diabetic of almost 23 years, and I’m a newly-minted doctor. I’m in my Internal Medicine Residency at NYU, and I’m also an artist.

When did you decide you wanted to be go to med school? Was that your childhood dream, or anything close to this?

Mike: Okay so, we’re digging in, Michelle, we’re digging in. So yes, and no. So I grew up in New York, and things that came more naturally to me were more of the arts. So I was much more inclined to paint and draw, to write. I was good in history and that type of stuff, the humanities. I was god awful at math and science, like, truly horrific. There were no doctors in my family, no real science in my family, and I was much more someone who could pick up a crayon, and I would shy away from the math textbooks. And so my whole life, I was kind of shitty at math and science. So I kind of geared more toward the arts.

Then when I was diagnosed with Type 1, I had just turned 9 years old, and as I’m sure you can relate, and most people who have Diabetes can relate… when you’re diagnosed with Diabetes, something that once was this automatic, unconscious process that your body was doing for you, has now become your full time responsibility. And in that shift of taking on this newfound responsibility, I gained this really deep appreciation for what medicine was, and what biochemistry was, and what things were happening in our bodies. Like a beautiful symphony of chemicals, and enzymes, and molecules, and it’s like “Holy shit. All of this is going on inside of me and I had no idea and now I have to take care of it”, and now as a grown man who’s a physician, who STILL struggles to maintain my blood glucose, it’s a really tall task to deal with.

So I got this window into physiology, and it made me fall in love with what was going on. I was really fascinated by it. So at that age I was always kind of interested in medicine, but because of my academic weaknesses, and my other strengths, I never really considered it as an actual possibility. And recounting of when I was growing up, you know growing up in New York you’d take the subway places, and I would be in the subway in high school or whatever, and I would see people in their short white coats, I’d see people in their scrubs, and it would be like seeing an astronaut. And you’d have this sense of just awe and admiration of like, you want to aspire to be like them. You want to be that astronaut. But you also know that you will never be that astronaut. So for me it didn’t even seem in the realm of possibilities.

So I went ahead and I ended up going to Skidmore College in Upstate New York, because they had a very strong art program. And I went there mainly for that. So I went to study art essentially, and I would draw these large naked women in charcoal and bring them home on my vacations and my parents, who were funding my college tuition, were like “Honey, come on, like forty thousand dollars for you to draw a pair of tits.” And I had to kind of reassess. So I reassessed, and I started studying neuropsychology, because I became very interested in the brain. I found a mentor within the neuroscience department who saw my interest, who saw my potential, and kind of took me under his wing. And it wasn’t until that part in my academic career that I had gained some academic confidence in myself. And I had this epiphany at the end of college that I wanted to go to med school.

How did you get through med school? Was it harder getting through med school and managing your BGs at the same time?

Mike: Yes, so, I was was never one of those diabetics whose A1C was always like 6.0 all the time, and you know, I always struggled, my blood sugars would fluctuate quite a bit in every environment that I was in. So med school being a very stressful, difficult environment, you kind of lose your autonomy of your time. You might be in the hospital for 8 hours, or you might be in the hospital for 24 hours, and sometimes you don't know. But how I got through med school academically was through my art. I drew everything, and by drawing everything, not only did I kind of make the material my own, but it made it a lot more enjoyable.

Now I ask every person with Diabetes that I interview this question; Favourite low snack?

Mike: I have this issue of when I’m low, I get these pregnant lady cravings, and I just shovel things into my mouth. I tend to have a craving for chocolate, so anything chocolaty is kind of my go-to, even though chocolate’s probably the worst thing to eat when you're low because it has all that fat.

 

Are you a pump user, or a Dexcom user?

Mike: Yup, I’m using the new Medtronic pump, and I’ve got my Dex.

Did you ever consider endocrinology as a specialty? Or do you deal with enough of that on a day to day basis?

Mike: That’s my plan! I want to be an endocrinologist. That’s what I’m planning to do.

Do you think having a chronic illness yourself will make a difference in the way you treat your patients compared to doctors who have never been through it?

Mike: I absolutely do. At least in America the training process is so crazy, and the volume of patients that you see and how sick they are, we’re overworked, and it’s very easy to become desensitized to the patient suffering. And it’s also very easy to kind of write patients off, especially their complaints about what’s going on. So being able to relate to them is huge.

Your Instagram is full of incredible anatomy art. Did you draw as you learned in school? Is that how you studied?

Mike: Yep, you got it. I mean, it’s two-fold. So I like to draw, just to draw, and the long detailed drawings that took longer were not necessarily done in med school and to study, they’re more for fun, and for aesthetic purposes, and for commissions, and stuff to hang in my house. But the large majority of what I’ve posted over the last 4 years is for medical school, and to help me learn. I never considered myself intelligent, so you know, when I was learning very complex things, the only way that I could understand them is if I broke them down, and explained them to myself in very, very simple terms.

In medical school, do they still teach something along the lines of “If you hear hoofbeats, look for horses, not zebras”?

Mike: Well in your case you’re quite a zebra. They do teach that. That common things are common, and it’s funny you say that because I have a penchant for zebras. I find that the sexy parts of medicine to me are the Sherlock-Holmes-y, detective things. And so I seeing a patient before they open their mouth, by looking at them and figuring out what’s going on with them. And there’s a handful of very rare diseases that if you could pick up, you’re like a superstar, because no one thinks of them. I’ve gotten into trouble though because medical education is so structured and so hierarchical that every way you talk about things is kind of algorithmic. So I would go see a patient, and the attending physician would say, “What’s your differential diagnosis?”, meaning what’s the list of most possible to least possible things this person has. I would always throw too high up on my list, you know, “Stiff Person Syndrome” “Pheochromocytoma” “Multiple Endocrine Neoplasia”, and they’re like, “There is no way this person has any of those.” So yes, they still teach that. And when you're dealing with a volume of patients, more often than not, 95% of the time, it will be the common thing.

I had a very finding out what was making me sick. At first my GP would blame my depression or anxiety. Then blamed deconditioning, and so on and so on, when my basic tests were normal. Because how can a vibrant young girl be sick? Turns out, I have quite a list of doctors to go back to and let them know what they missed. And I know way too
many people with the same story. With that being said, I have two questions.

Do you think patients are judged on their age, appearance, and possible history of mental illness?

Mike: Sadly, I think they are. And I think that the problem is medical education. Because we are taught based on multiple choice exams, and multiple choice exams kind of push doctors to learn by pattern recognition. And pattern recognition also relies on demographics. Demographics being.. before I even finish rest of the question on the exam if it says “Middle-aged African American woman with joint pains”, I’m already thinking “Sarcoid and Lupus.” So these are the things that they just try and shove into your brain. Or like “Young white caucasian female with headaches and vision issues”, you’re thinking “Multiple Sclerosis.” So these are the ways that they teach us because there’s so much volume of information, it’s almost impossible not to use those patterns.  And I think for 70% of the time, it’s good. It helps you. But then those people who fall through the cracks, those 30% of people, are getting judged by those types of things.

What do you think is the best way to make complex patients feel heard?

Mike: So I think patients are patients, and patients are people, and like any person, they literally wanna be heard. There’s data that shows physicians will interrupt their patients in seconds when they walk into the room. I make an effort to sit down. And I think that’s also something a lot of doctors don't do and there’s data that shows that if you spend the same amount of time with a patient, and in one instance you’re sitting and in one instance you’re standing, the patient perceives you as being in the room longer. So I make a real effort to sit in the room, and I make a real effort to ask how they're doing, and ask open ended questions and let them talk and tell their story.

 

 Thank you Mike for the great interview! You can follow Mike and his cool drawings on Instagram @mike.natter 

YOLO

Since my diagnosis and prognosis began to sink in, I've found myself looking at life a little differently.

While my illness isn't terminal, it struck me that this could be the healthiest I could ever be in terms of mobility. And that's not to be negative, we've known for a while that my disease is progressive, but now that I've learned exactly what could happen to me at any time, it really hit me. I don't know what future treatments will hold, and what streaks of improvement I might be lucky enough to have, but I do know that I'm living with a progressive disease. And I'm beginning to become aware that one day there will likely be a lot of things I can do right now that I might not be able to later.

So no, I'm not planning on going skydiving, but I find myself saying yes to things I would have said no to out of anxiety or because I knew my illnesses would cause trouble with it. Before I start treatments that may help my mobility and slow progression, but may cause troublesome side effects, I'm traveling as much as I can to see friends. I find myself wanting to explore. I'm trying things I would normally shy away from. I find myself wanting to make as many unforgettable memories as I can.

When I'm asked to do something that's out of my comfort zone, mentally or physically, I get struck by the fact that I might never in better shape than I am right now. And it's a humbling thought. But I've also found myself sounding like a loser and saying "YOLO" out loud several times. For anyone who somehow doesn't know this acronym, it's you only live once. Hopefully I'll get access to treatments that will that will make me feel healthier than I feel now, at least for periods of time. But in the meantime, I'm trying to live by YOLO.

I'm an overthinker. For everything. And I think in part this is teaching me to let loose a little. And while that's caused by something not so positive, it makes me feel positive. And I think that will take me further.