Sunday, December 16, 2018

A Patient’s Perspective: What Makes a Good Doctor?

I’m sure if you asked a handful of people what makes a good doctor, everyone would have a different answer for you. Over the last 5 years, I’ve happened to see more doctors than most see in a lifetime. And let me tell you... there are some really special doctors out there who truly found their calling in life. And then there are some who seem like they may have chosen the wrong profession.

My simple answer to the question, “What makes a good doctor?”, is collaboration.

Some of us have pretty confusing medical issues and it becomes frustrating for both us, and the doctor, when no one is quite sure what to do. When I’m confronted with a doctor who isn’t willing to listen to my thoughts, my opinions, and my complaints, I feel completely shut out. All of the sudden they’ve become the dictator of MY body. And that’s not a good feeling. There’s a quote that goes around that says something like, “Yes, you had a two hour lecture on my condition. But I’ve spent 10 years living with it.”

And this is where the collaboration comes in. The doctors I’ve met that I honestly admire truly want to understand you as a person, and understand what is important to you in your care so that they can help you. I’ve found very few doctors like this, but when I have, I’ve breathed the biggest sigh of relief. They see you as a whole person, a whole entity, and not just another chart.

So I know I’m just a measly patient, but if any open minded doctors out there happen to read this and want to know how to possibly better help some of their patients, here is my advice.

1. Keep an open mind. We are very aware that we are not doctors or medical professionals, but we spend more time on our case than any medical professional has time for. Maybe we have ideas that could genuinely work for us, ideas of tests that could be run, ideas of treatment strategies, ideas of aids that could potentially improve our quality of life. Don’t be closed off to our input just because we’re not the doctor. We know we’re not the doctor. But you are, and you have our life, and our comfort in your hands. COLLABORATE. 

2. Don’t tell us “never to Google”. As a patient, again, we have a lot more time to spend on our own cases than you do. And we understand that. Doctors are overloaded and busy as can be! But demeaning a patient for using Google to do their own research is not okay. No patient should be made to feel embarrassed for researching their illness or researching treatment options. And if we bring a paper to you and you say it’s not from a reputable website, okay, we understand. But if it is from a true, primed and published study, please have a look. We aren’t trying to complicate things. We are only trying to better our quality of life. If we come in asking if it’s possible that we have “so and so disease”, and that that’s what could be causing our misery, don’t laugh at us or brush us off. Listen to our reasoning and consider it. Once in a while we may just be right. COLLABORATE. 

3. DO expect us to do our part. If you recommend something and we agree to it, such as physical therapy, taking a certain medication prescribed, trying to cut out a certain food group, etc, then we absolutely should try what we agreed to. If you are genuinely trying to help us and have ideas, we need to do the same thing with you; COLLABORATE. 

4. When we tell you about issues we are having, please don’t brush them off. It may seem like a minor issue to you, but it’s something that we have to deal with everyday. Maybe if you dig deep you can think of an explanation for this symptom, or something that can bring us some relief. We know you have a lot on your mind, but we’re relying on you. COLLABORATE. 

 5. Realize how much power you have. We tell ourselves that you’re “just a person”, but in reality, you’re more than just a person. You’re someone who holds our comfort, our quality of life, and our future in your hands. And again, we realize you hold many of these lives in your hands, and that it can all get a bit much. Individuals can start seeming like less of a big deal in the big mix of things. But to us, you’re the ONE person who can help us. You have the power to better our lives. COLLABORATE.

 6. Know that although you went through intensive years of medical school, we are the ones living in our bodies. We can do our best to describe what we feel, but only we can really feel it. So BELIEVE us when we tell you something is happening in our body. Know that we have lived in our bodies our whole lives, and when something doesn’t feel right, we know. Don’t let patients slip through the cracks because they might “seem” healthy to you based on initial tests. See them for their suffering. See them for the things they dream of doing if you can help them. COLLABORATE. 

When we work together and really listen to each other, that’s where the magic happens.

Friday, November 16, 2018

Tips For T1D in High School

Old picture from my high school

My Type 1 diagnosis came in my first semester of high school. No time to settle in. It was early October and I just learning what high school was all about.

The day I was diagnosed, my parents bought me my first cell phone. Not as a gift or a reward or anything. But because they knew that if I went out with friends I’d need to be able to reach them in case of an emergency. But I didn’t really care why I got the phone... I was just excited to get it. It kind of distracted me from the horrid thing that had just happened.

But again, it was the beginning of high school. I think everyone just wants to fit in at that time in life and that’s okay and makes perfect sense. But as such, I hid my diabetes. I did anything I could not to draw attention to myself. I went into a bathroom stall to test my blood. If I went low I’d secretly shove something down my throat, sometimes hiding behind my locker. I felt ashamed of my disease. Not only did I feel different, but I had such a fear of the stigma that comes with diabetes. I worried that people would think I did this to myself, that I ate too much sugar.

1- Don’t hide and don’t be ashamed.

You have every right to walk around just like every single other student in that school. You’re no different. You just have an obstacle that you’re overcoming everyday. And that makes you pretty awesome.

2- Talk with your teachers when the semester starts.

Let your teachers know about Type 1, and the things you might have to do during class. Let them know that your blood sugar might go low, and that you might have to have some glucose tabs, or other food. Or that you might need to leave the class because of that. Let them know that you might have devices beep during class, and maybe ask them not to call it out when it happens if you don’t want to be pointed out. Let them know what to do in an unlikely emergency too. Better to be safe!

3- Listen to your body.

If you feel yourself going low or high, don’t tell yourself anything like “Oh, I’ll just wait until class is over.” You don’t have to! If you’ve let your teacher know that you may need to be excused from the class, go do what you need to do to take care of yourself!

4- Have snacks available.

Don’t get stuck in a situation where you’re low and have nothing on you to bring your blood sugar up. My suggestions would be to always have something in your pocket, like glucose tabs or gummies, and to also have your locker loaded with snacks. Especially juice boxes!

5- Remember that you have power.

Sometimes you might feel like Type 1 has all the power over your life. But the truth is, is that Type 1 Diabetes is a bump. But you are the mountain. It doesn’t change who you are, and please, please, try to remember that. Don’t pretend it isn’t there, but know that it doesn’t change anything. You are a high schooler, you are the things you love. You just happen to have an illness that has probably made your stronger than most of your peers. You’ve got this.

Thursday, November 1, 2018

Diabetes Awareness Month 2018

Photography by Talya Shai

This is the month where many of us in the Type 1 community inundate our Facebook friends, our Instagram and Twitter followers, and our blog readers with information about Type 1 Diabetes.

And some people might get annoyed with us. But you know what? That’s too bad, because the world is so full of false information about Type 1 that every single person who is telling the world the truth makes a difference. Or at least that’s what I believe.

Diabetes isn’t a “sexy” disease, as people would say. Nope. It’s stigmatized with much of the world thinking we gave it to ourselves by eating too much sugar, that it’s a “fat person” disease, and many more misconceptions that are incredibly damaging to Type 1s.

Explaining to the world that this disease can hit anyone, at every time, is important. People need to know that it can happen to your parents, your friends, your siblings, or yourself. And though it’s commonly diagnosed in children, it’s diagnosed in adults too! It happens to athletes, lawyers, tiny children, and your everyday person. It doesn’t matter your size, your shape, your weight, your age... it can come and hit anyone like a freight train. Because it’s an autoimmune disease and unfortunately there’s nothing to do to stop it and there’s no cure. This is why we fight so hard and make so much noise.

So, to my fellow T1Ds, here’s to making a ton of noise this month! May the awareness begin!

Monday, October 22, 2018

A Love Letter to Anyone Who’s Struggling Today

Hey struggling soul.

I want to tell you a secret. You are so much stronger than you think you are. Do you remember the last day that you felt this way? When you felt like you couldn’t take this anymore, or that you were just so tired of living life like this? You made it through that day. And  there’s proof that you can make it through this day too.

Whether you’re fighting your body, or your mind... or maybe both, you woke up this morning. Though you may not have a choice and these circumstances have chosen you, you are facing them head on. And you might feel like they’re overwhelming you, or like you’re not strong enough to handle them. But you will look back on days like this and be so proud of the way you surprised yourself. Just like you’ve surprised yourself before. Again and again.

It’s not fair that that life has dealt you this deal. It’s not. There’s nothing that makes it okay. But I hope you know you deserve to be proud. Because you go through things that other people couldn’t handle. You don’t even realize all the little achievements you’ve attained. Every single day, from getting up, to forcing yourself to bathe or shower, to pushing through the pain, and fighting for your life.

And though some days you might feel like you’re losing, the mere fact that you are pushing through is a little win. You are braver than you think. More of a fighter than you think. More fearless than you think. And no one knows. It’s a pretty silent battle. No one knows the little things you overcome in one day. 24 hours. Maybe today you felt pain all over your body. But you still made it through. Maybe today your mind was a mess. But you still made it through. Maybe today you were just tired. Exhausted. You felt like you had the life sucked out of you. But still, here you are, another day that YOU won over what’s trying to take over.

Please don’t underestimate yourself. It might feel like the score is 0 for you, and 1 for life, but you are so much more than you think you are. You have power over the pain the world has caused you. And you deserve every single ounce of that power, because you fought for it. And you continue to fight for it every single day.

So in case no one has told you lately.... I’m proud of you.

Saturday, October 13, 2018

10 Things You Become Grateful For When You’re Chronically Ill

1- Friends who don’t forget about you.

It’s so easy to become isolated and kind of forgotten when you’re chronically ill, especially when you’re stuck at home a lot or all the time.  Friends who hang on are special.

2- Low pain/High energy days.

When you’re chronically ill not every day is the same. Some days your illness will be overpowering, and sometimes you’ll get days where you feel pretty good compared to how you normally feel. Those are the best days!

3- The ability to eat.

Many of my chronically ill friends have either lost the ability to eat, or go through flares where they can’t eat normally. And so you become grateful for being able to eat. Even if you can’t eat completely normally, or pain free, you become grateful. And you learn that you should have always been grateful!

4- Being able to get around on foot.

A lot of us rely on mobility aids to get around because well, otherwise we wouldn’t be able to. Another case of you don’t know what you’ve got til it’s gone. So those of us who CAN get around on foot learn to not take it for granted. And those of us who can’t... brings me to my next point.

5- Mobility aids.

When you lose the ability to go where you want to go, it can be a huge hit to your independence. So sometimes we have to learn to be grateful for the tools that can help us live a fuller life. My wheelchair, as much as I wish I didn’t need it, gives me freedom that I had once lost.

6- Good doctors.

When you’re chronically ill, you usually end up seeing more doctors than you can count on two hands. But you can probably only count on one hand the ones that have made a big impact on your life. Complex chronic illness is a handful for doctors. It sucks, but it is. Many times they don’t know what to do with us, and will pass us off to another one of our specialists. Sometimes they’ll have no idea why something is happening but won’t want to admit it. But those special ones, the ones who fight for you, and don’t give up on getting you proper answers and treatment, they are something to be so grateful for.

7- Nurses.

Us chronically ill learn quickly that we spend far more time with nurses than we do with doctors. They are the ones who get to know us. Who advocate for us to our doctors. Who try to make sure we’re always comfortable. Who deal with all the gross things that go on, but don’t make us feel uncomfortable about it. Nurses are angels on earth.

8- Friends who go the extra mile in regards to your illness.

A lot of us say that one of the best and most comforting things a friend, or even a family member, has said to us is “I googled your illness.” Having that friend who wants to learn about your illness, so that they can support you, is something special. Especially ones who support you on awareness days, for fundraisers, or share articles. It just shows how much they care.

9- Functioning body parts.

When parts of your body malfunction, it’s pretty impossible not to become grateful for the parts of your body that work!

10- The ability to travel.

As young people, we have so many places in the world we want to explore. But sometimes traveling to those places becomes unrealistic or impossible due to poor health. There are periods of time where things are too unstable to take the risk of going on any sort of trip. So anytime we have the ability to visit somewhere new, it’s something extra special. Even if it’s visiting another place for medical appointments!

Monday, October 1, 2018

Cause of Death: Type 1 Diabetes

While Type 1 Diabetes is never directly listed as a cause of death (it’s usually complications of Type 1 which I’ll get into), it may as well be. Because if Type 1 didn’t exist, if it didn’t make its way into innocent bodies, then these deaths wouldn’t be a thing.

If I’m ever going to get angry at Type 1 Diabetes, this article is the time.

I’ll do a quick overview for those unfamiliar with this disease. Type 1 Diabetes is an autoimmune disease where the body mistakenly attacks the beta cells in the pancreas. Well, those make insulin, and insulin is needed to live.

Technically, no one should die of Type 1. Before 1921, this disease was a death sentence. When someone was diagnosed, they were weeks or even days to live. This is because they went into DKA. What is DKA? DKA stands for Diabetic Ketoacidosis, which is when there's a large amount of acid in the blood, called ketones. This happens when your body doesn't have enough insulin, so it starts breaking down the fat as fuel. It is FATAL. All of that changed in 1921 when insulin was discovered by Banting and Best. People could live and thrive with this disease.

2018. It is the year 2018 and people are still dying. Young people who had their whole lives ahead of them.

There are many different reasons for the loss of these lives. Some of them, were so painfully preventable.

So many missed diagnoses, when a simple finger prick at the doctor could have revealed the illness that was screaming in their bodies. ALL DOCTORS SHOULD DO SCREENINGS FOR TYPE 1 USING FINGER PRICKS. It is so simple, so easy, and early detection can save so many lives.

One case of this has stayed with me and remained close to my heart, and with the permission of her parents, I’m going to share her story with you. Kycie Jai Terry. One Sunday Kycie complained of a headache. Not getting any better, on Wednesday she went to her doctor and was diagnosed with Strep Throat as the cause of all this. But even then, her condition didn’t improve. She kept throwing up and losing weight. So on that Friday in the January of 2015, her parents took her to the ER. Type 1 Diabetes. The whole time it was Type 1 Diabetes. Not Strep throat. She was life flighted to Primary Children’s Hospital as her condition continued to deteriorate and she started seizing. They thought she fell into a diabetic coma, and waited for her to wake up. Only they found that her brain had herniated. She had a traumatic brain injury, and her life would never be the same. But she was a little fighter, beating so many odds. She fought, with her loving parents alongside her, even though she only opened her eyes for short periods of time and made little movements. Once a perky little girl, now unable to talk, walk, or eat.  On July 11th, after developing pneumonia, Kycie passed in her parents’ arms.

Beyond Type 1 has worked hard to get their DKA awareness posters in pediatricians’ offices around the world. Type 1 is so commonly mistaken for a simple virus, a stomach flu, a UTI, or even just a child acting out. And sometimes, this misdiagnosis is fatal. When, again, a single finger prick at the doctors’ office could have changed everything.
Diabetes can have a mind of its own and lives are also lost for unfair reasons that couldn’t have been prevented. Examples include becoming hyperglycemic, or hypoglycemic due to various things like acute illnesses, dosing miscalculations, etc. And long term complications of this disease like kidney failure or heart disease. This is why we continue to fight for a cure.

In the meantime, we need to do everything we can to prevent as many losses to Type 1 as we can. It’s so easy to feel lost in this huge world when things can go so wrong. But you’re not helpless, you can make a difference.

How can you help?

1- You can try to get Beyond Type 1’s DKA Awareness posters up in your local doctors offices.

2- You can spread the word about the early symptoms of Type 1, and maybe you’ll help a family catch it before it’s too late.

3- Visit and ‘like’ Test One Drop’s Facebook page, where resources are constantly shared, and so is news related to this topic.

4- If you know someone who has lost a loved one to Type 1 Diabetes, let them know about Beyond Type 1's program Jesse Was Here.  This is a program to connect parents who have lost their children to Type 1, where they can find support.

5- If YOU notice the warning signs in someone, SPEAK UP! Advise them or their parents to ask for a finger prick at the doctors.

A full list of potential warning signs:
Excessive Thirst
Frequent Urination
Rapid Weight Loss
Increased Appetite
Stomachache, Nausea, and Vomiting 
Dry Mouth
Bedwetting or Heavy Diaper
Blurry Vision
Irritability and Mood Changes
Fruity Breath
Heavy Breathing
Itchy Skin
Slow Wound Healing
Rapid Heartrate
Recurrent Infections

For now, let’s take a moment to honour and remember some of the lives taken by T1D, and do them some sort of justice by doing what we can to prevent more passings.

In memoriam.

From left to right:

Jesse Alswager (13), Kycie Jai Terry (5), Sophia Daugherty (10)

Arya Greenlee (3), Natasha Horne (20), Michael Cohen (25)

Will Hauver (22), Alex DePriest (17), London Layton (15)

From left to right:

Drew Turville (11), Angela Elizabeth Robinson (11), Kedrick “Santana” Callaway (13)

David Brown II (4), Morgan Angerbauer (20), Marquis House (19)

Addie Parker (4)

Wednesday, September 19, 2018

When An Aerie Employee Made A Shocking Comment

About a week ago I had an encounter while I was shopping at Aerie that had me fuming. At that time, in the midst of my anger, I posted this on Instagram.

"“I’m jealous! I’d love to be sitting and be pushed around.” *laughter ensues*
No. I’m not kidding. And this isn’t the first time someone has said something along those lines. Today I had a hospital appointment and my mom has an easier time assembling my manual chair so we took that one instead. Afterwards, we made a pit stop at the mall to grab something. Enter one of my favorite stores to be greeted with the exact sentence I started this with. Don’t people realize how insensitive this is?! Maybe I’m overly sensitive, but I think it’s such a slap in the face to be in a wheelchair that I’m FORCED to be in and to be told that I’m “lucky” to be sitting?! Girl, you can have my chair and my disability and I’ll take your job! Even worse, I hate to say this happened at @aerie. With all their all-inclusive campaigns, I really think that maybe their staff should be trained on proper “etiquette”. I feel bad because this employee is always nice with a smile on her face but I just thought this was so inappropriate and feeling pissed off. How many of you have had encounters like this?!”

I received so many supportive comments validating my anger.

I could not believe that someone told me they were jealous of me sitting in my wheelchair. If only she knew. If only she knew how quickly I’d trade places with her. If only she knew the pain and suffering that landed me in that wheelchair. If she knew that I had simple dreams of working a retail job. If she knew what I’d give to be walking around the whole mall, instead of being glued to that seat. If she knew how devastating it is to be robbed of your full mobility. If she knew how it felt to be young and sick. If only she knew.

But she didn’t.

And so as I had time to reflect on what had happened, I thought about why she might have made that comment. I shop there a lot so this employee may have just felt comfortable to make what she thought was a joke with me. Maybe she didn’t think before saying it but maybe she thought about it for the rest of the day. Or maybe she just had no awareness of invisible illness. Because you know... sometimes you really don’t know that something’s inappropriate until either you or someone you love are put in that situation. Had she known the devastation that chronic illness causes, I doubt this situation ever would have happened.

But you know what? Even though the comment was totally wrong, I also choose to stick with a philosophy that everyone is constantly growing and learning. We’ll all make mistakes until we learn that they were just that, mistakes. So as long as a person is willing to learn and grow and has good intentions, I think the world can keep spinning. Life is about growth, and if we don’t give people space to grow, how can people evolve? And how do we help solve this? We keep raising our voices. We keep raising awareness. We keep educating the world about invisible illnesses. Because the louder we shout, the more of an understanding world we will live in. And hopefully people experience situations like this less and less.