Sunday, December 31, 2017

10 Mantras For The New Year

“If you are depressed, you are living in the past. If you are anxious, you are living in the future. If you are at peace, you are living in the present.”- Lao Tzu

This is a quote I posted on my Instagram, and my when my friend Shiri saw it she told me I should use it as a mantra. I had never really used a mantra before... but that’s what I did. And when I’m stressed, I play this quote in my head, and ground myself and bring myself back to the present moment. 

“Keep your soul rooted in gratitude and your branches open to blessings.”- Mary Davis

When I started my gratitude journal as my last New Years Resolution, I never imagined what a difference it could make. Even on your worst days, forcing yourself to remember just a few things you’re grateful at night, lets you go to sleep with a little more peace.

“One small crack does not mean you’re broken, it means you were put to the test and you didn’t fall apart.”- Linda Pointdexter

I don’t know one person who hasn’t undergone some hardship that has made them feel broken. But it’s so true. We’re all still standing. It’s like when you drop a glass and it miraculously doesn’t shatter. 

“I learned that courage was not the absence of fear, but the triumph over it.”- Nelson Mandela

I used to feel weird when people would tell me I was brave or courageous. Because I certainly didn’t feel that way. I felt scared and confused.   But reading this quote makes me feel better about it. How many things have you been scared of this year, but pushed through anyway and survived? That really is courage.

“Having a soft heart in a cruel world is courage, not weakness.”- Katherine Henson

I’m personally a very sensitive person. I’m an empath. I care what people think. When someone around me feels pain, I feel their pain. And this is both a curse and a blessing in my opinion. It’s a double-edged sword. Because the words of others can hurt me so easily, but my ability to feel their emotions makes me someone who wants to be there for them. So while I need to harden my shell and learn to let the opinions of others bounce off, I also need to learn to see my sensitivity as an asset as well. 

“People will forget what you said, people will forget what you did, but people will never forget how you made them feel.”- Maya Angelou

I read this quote for the first time this year, and I found it so powerful... because it’s so true. Out of all those things, people won’t remember words, they might not remember actions. But they definitely will remember how your words and actions made them feel. They will remember you by how you made them feel.

“I am blooming from the wound I once bled.”- Rune Lazuli

Look back and see how you’ve grown from each experience you dealt with this past year. You learn, you learn and you learn, and you never stop growing. Thinking back to your hardships, think about how you might have grown and what you might have learned from them instead of how they hurt you. Picture flowers instead of scars. 

“Don’t compare your life to others. There’s no comparison between the sun and the moon. They both shine when it’s their time.”- Unknown

We’re all at different places in life, some of us are a little ahead, and some of us are a little behind. But are we really? Is there really a timeline for life? Everyone is so different, and it’s okay if you’re not going at the same speed that society expects you to go at. None of our paths will be the same. Just because yours is different doesn’t mean it’s wrong.

“In the end you tried, and you cared, and sometimes that is enough.”- Unknown

If your intentions are good, but the outcome isn’t, sometimes you have to give yourself a pass. You just have to, because if in your heart you know that your thoughts were well-meaning, you did everything right. 

“Do not seek love. Be love. Then you will never be without it.”- The Better Man Project

Oh how I love this one. You can spend so much time seeking love. Seeking friendship, and seeking nurturing. But what if you’re the one doing the loving? There’s always loving you can do. And it’s so hard to feel badly when you’re pouring out love. 

I'm wishing you all a happy and healthy new year. 2018, be nice to us!

Wednesday, December 27, 2017

What People With T1D Want In 2018

I went on the Beyond Type 1 App and asked my fellow Type 1s and their famlies what they want to see more of in 2018 for Diabetes. I started with a few of my favorite answers, and then went into sections, because there are some things a lot of people can agree about!

I would love an insulin pump that can be used by blind people. I really want to start pump therapy, but I can’t at the moment due to lack of accessibility. -DJTI

Less diabetes jokes and cheaper care. - Walter Kohler

Less expensive supplies and insulin. Restaurants that put carb info on menus like they do for calories. - Jim DeTore

Would love to have two distinct names for type 1 and type 2. Putting them together doesn’t do justice to the severity of both conditions. - Raj Sen
I am hoping to educate the public about LADA Type 1. I believe there are more adults out there with Type 1 who are misdiagnosed each year. One of my fellow colleagues since my diagnosis found an 88 year old patient with out of control type 2 had been misdiagnosed for YEARS- all because the proper testing was not completed. And, of course, a cure would be nice!!! - Moya Cook
More emphasis on alternative modalities like yoga, breathing, and mindfulness to support people living with T1D. - Rachel Zinman

Easier access to medications, and service dogs! I have had several seizures caused by low blood sugars which happen so often for me I lose the ability to feel when my sugars drop; a service dog would be a HUGE help for me but they are $15,000 and no one has that kind of money. Insulin also currently costs me $500 a month! It’s such an expensive illness! - Jessica Flynn

Better healthcare coverage for insulin and supplies here in the US. And hopefully less expensive insulin as it was some years ago (although very very VERY unlikely) - Stephanie Chaparro

Better healthcare and less cost. - Robb Barth

US here — hoping that accessibility to supplies with greater insurance coverage in 2018. The expense even with insurance is heinous! - Alyssa Black

Cheaper insulin and supplies!!! I don’t work right now and the only reason I was able to have my stuff when my insurance got cut off was because I had left overs. The pharmaceutical companies in this country are greedy aholes!! - Indiana Monterrey

We shouldn’t pay for insulin period. - Kenton Samuel

The government in ON Canada needs to cover more Type 1 supplies instead of only giving us 600 for every three months. - Debbie Lewin

In 2018 I would like to see us type 1 diabetics to be able to afford our supplies weather we can afford them and food for our families. Also for Heath insurance to cover our supplies when we need them and not have high deductible. For health insurance employees to understand how stressful it is to get our supplies when we have to decide to get our supplies or put food on our table. For better endocrinologist.- April Black


A much greater understanding about type one for people without type one. - Troy Sandy

i am hoping that more advocacy happens. more people in books and movies for people to see with real info, more kids taking action and spreading awareness, and health insurance for all. - Ayla Kanow

I wish it was talked about more. You see all these commercials advertising insulin and pills for “diabetics” but 100% of it is for T2D. Every time the public or the media talks about diabetics it’s for T2’s. Let’s get them talking about T1D! - Iesha Meza
Definitely free or more affordable programs for insulin/supplies, more schools educating children to know the symptoms of type 1 and also know the difference between type 1 and 2, and more convenient less painful CGMs 💙 - Erica Ratcliff

Greater understanding from medical support staff, such as GP receptionists, of the variability of managing Type 1.- Becky Vause

Awareness that adults with type 1 diabetes still need help and access to technology such as CGMs/libres.- Clare Hutchins

More support better understanding from employers and medical services help with financial needs as a lot of us struggle each month. - Julie Ann Lyons
For all big companies to have training about diabetes even type 2. Where I work no one understands it as nobody has worked there. Surly all managers in all companies should not at least a little bit about low and high bloods.- Kelly Carter

Increased understanding of how difficult walking this tightrope is ... - Patt Keith

I'm wanting more awareness for us.- Danni Hutchison

And there you have it. The people have spoken. What changes do YOU want to see for us in 2018?

Monday, December 11, 2017

Weight and Chronic Illness

I’ll start this post with a trigger warning because weights will be discussed in numbers, so if this is something that triggers you, I’d suggest skipping over this one.

One of my best friends and I have both been through the ringer when it comes to weight. She has Chronic Intestinal Pseudo Obstruction, and I have Intestinal Dysmotility but we don’t know exactly what parts are involved yet. The point is, we both lost our appetites, generally feel nauseous all the time, she couldn’t hold anything down and we both dropped a significant amount of weight.

My weight loss was split into two sections, which I’ll explain in a minute. We were both what some considered “chubby” prior to the weight loss. She’s much taller than me but we were probably around the same size proportionally. During the first section of my weight loss, I was put on Vyvanse for ADD, and lost my appetite. I weighed over 140 pounds and am 5 feet tall. I was at my highest weight ever. With this appetite loss and diversions to certain foods, I lost 20 pounds. I was thrilled with my new body that I did nothing to obtain. I had to get rid of all my big baggy clothes and trade them in for new, smaller ones. 

I maintained that healthy weight for about a year before my gastrointestinal issues seemed to get worse, which is my current situation. Like I said, no appetite, relentless nausea, and abdominal pain. In the last few months, I lost over another 20 pounds. Now I’m bordering underweight, and am desperate for help in that department. It could be a mix of my liver issues with my dysmotility, or it could be something else.

The weight fluctuations that can come with chronic illness are HARD. I had to get a new wardrobe after my first weight loss, and now those don’t fit me anymore. My friend went through the exact same thing. We’ve pretty much been every size of clothing. 

Because of society’s standards and what we see in Hollywood, people we know who aren’t close to us might make comments; “You look so good! What diet are you using?”, “What did you do so I can do it?”, “You look phenomenal!”

In the meantime, we’re here thinking... you don’t want to use my diet. The way I lost this weight was not healthy. It also caused months of pain and suffering that I wouldn’t wish upon anyone. 

And then we have the opposite end of the spectrum. Gaining weight from chronic illness. This is how I ended up at 140 to begin with... my sedentary life due to my illness. But others gain for different reasons. Medications, treatments, nothing comes without a side effect, and for a lot of those it’s weight gain. Some illnesses even cause weight gain.

This is the part where we get to talking about body appreciation, and learning to love the skin you’re in. How is one supposed to have time to do the mental work it takes to love your body and feel comfortable the way you are, when your body is constantly changing? You finally get used to one weight, and the next thing you know, you’re having to adjust to something else. 

Learning to love your body at its highest weight can be a tall task. But over time, it’s doable. 

Learning to love your body at your lowest weight, well... you may not like the circumstances, but you might be pleased with your newfound small body. The problem is, is that then you get used to it. And as you recover and get the proper medical treatment, or go on a medication that causes weight gain, you can feel every pound that adds on, and it feels weird.... because yet again, you have to adjust to your new body, but you just adjusted to your recent one. 

And this cycle can repeat itself many times. How, in this day and age, are you supposed to love and accept every part of your body at all different weights? It’s yet another challenge we face that isn’t talked about frequently.

To my friends with chronic illness going through this... you are not alone. Learning to love your body one way is hard enough with all the pressure from society, but learning to love multiple versions of your body is another challenge in itself. And I am so proud of every one of you chronic illness ladies and gents who are doing your best every day to try to love yourself the way the way you are. And having to do it over, and over again. 

I’ll end this with a quote, “You don’t have a soul. You are a soul. You have a body.”- C.S. Lewis

Friday, December 8, 2017

Chronic Love Club

It was a strange time in my life. I felt like it was Groundhog Day. Everyday I would wake up, deal with strange symptoms, and get explosively frustrated about why this was happening and why doctors couldn't tell me what was happening. My illness started out with a bunch of odd neurological symptoms. And through a follower on Instagram, I was introduced to Derek, who had undergone 10 years of searching for answers for strange neurological issues before getting answers. I can never thank the person who introduced us enough times.

We got talking and I quickly realized two things 1: He was so full of love. 2: He was pretty much as wise as Gandhi. As we went through similar symptoms, we spoke on the phone everytime I needed a moral boost or advice for an upcoming appointment. He was exactly what I needed to get through this torturous time in my life, and through the power of the universe, we met.

We both ended up being diagnosed with very rare neurological diseases which are surprisingly similar symptom-wise. And we would think about how lucky it was that by chance we were introduced.

So Derek suggested we start some sort of inspirational project for the chronic illness community. I already had a page on Instagram where I would post inspirational quotes with the handle @chronicloveclub, and thus Chronic Love Club began. Every day we share a motivational or relatable quote, and a new story from someone fighting a health battle of any kind. We have the privilege of sharing stories from real life heroes, and I want myself never to take that for granted that these people are trusting us with their stories of struggle and triumph. And some of the stories we read... are unbelievable.

We started doing this for both us, and others. We want to raise awareness, and let others share their stories with the world. But as two people with debilitating chronic illnesses, unable to work or go to school, we both felt a sense that we were missing a purpose. And as much as Chronic Love Club is helping others, it is helping us. We have found a way to fill up our time that is meaningful to us in a way words can't describe.

We really have only just begun our journey with Chronic Love Club, but we both feel like it's home. We can't wait to see what unfolds in the future, and for now, we're just taking things one day at a time!