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)