Friday, May 18, 2018

Why Seperating Your Illness and Your Identity Can Be So Difficult

I was listening to a podcast I did where I was asked the question, “Is there a ‘who you were’ pre-illness, to a ‘who you are now’? Have your interests changed? Do you still want the same things in life?”

My answer was easy. No, I am not who I am pre-illness. No, I no longer want to be a fashion photographer. If I miraculously healed, I wouldn’t go back to school for the same
program. I no longer have the same friends. The people closest to me are not the same people as they were. And that’s okay. 

It’s funny, because when you have a debilitating chronic illness, your life kind of comes to a stand still. But then you look back, and even though not much has changed over the years, there has definitely been a change in the person you are. 

Friends get slowly lost when you become ill, especially with a mystery illness. And I no longer feel any resentment toward that. It’s understandable. You stop being able to do the fun things you were once able to do together, and what you’re going through is so foreign to old friends that they don’t necessarily know how to fit into this life of yours that has changed. That doesn’t make it less painful, but over time you begin to gain a different perspective. 

I used to be super passionate about becoming a fashion photographer. My love of photography started in high school, and for years I did photo shoots with my friends, even doing photography for some small businesses. I started school for professional photography in college, and it was after the first semester that my illness hit. I look back now, and I know that if I were to get better, I wouldn’t return to that program. Through these years of illness, I’ve learned that I have other passions. I never know what will remain a hobby and what will develop into a career, but I definitely know those things have changed. 

When you’re chronically ill with a life-altering disease, your life starts looking a lot different. Your days become choices, deciding where to spend the energy you have that day. For example, I love makeup, but have seldom been able to do it lately because I’ve chosen not to use all my energy up just getting ready. Days that used to be filled with society’s norms become filled with doctors appointments, procedures, and tests. That beautiful walk in the park on a summer day might not be something in the realm of possibilities. 

So with all that, how can it be easy to maintain your identity? Chronic illness does its best to take away your identity. It makes you slowly forget the things you used to love to do, it slowly robs you of the circle of friends you once had, and it makes you question who you even are anymore.

Then: I was very into fashion and makeup. I had great friends that I had sleepovers dates with where we’d stay up until late eating snacks and chatting about everything, from TV shows to school to personal matters. I was going to be a fashion photographer. I prided myself on that. 

Now: I see any friends on FaceTime the majority of the time. I’m constantly taking meds to curb symptoms. I can no longer talk to my old friends in that same relatable way. They work or go to school, and that is their life.  And as much as I love them and wish it was my life too, it’s not. I’m happy to say I haven’t lost my love for fashion and makeup. I’m even considering getting back into photography as a hobby. However, I’ve discovered my true passions; writing and advocating for invisible illnesses. Trying to help people who are on a similar path that I walked. Diving into the Type 1 Diabetes community. 

So in a way, my illness became incorporated into my identity. My passions changed because the things I felt strongly toward changed. And that’s bound to happen. As years go on with a chronic illness, and you learn more and more about disability, you find yourself interested in different things. Regardless of chronic illness, actually, the mind and soul are always growing and learning. It’s never-ending. 

All in all, I think it’s okay to not maintain your identity after becoming chronically ill. I think your identity might have changed anyway, but any major life event can have an effect on who you are as a person, and chronic illness certainly is a major life event. 

But there can come a point where you no longer recognize yourself. You know longer know who you are apart from your illness. Try to remember who you are. You have an illness, but you are not an illness. You are a person, with a favorite color, and a song that makes you smile every time you listen to it. You know what kind of day is your perfect weather. You have a favorite food that makes your lips water. You have more of an identity than you might think you do. Reach for it. 

Sunday, May 13, 2018

Moms With Sick Kids- A Special Breed of Human

This article is dedicated to all the moms whose lives didn’t go as they planned. Whose kid got sick and life took a huge turn. 

To all the moms who have stayed up all night on an uncomfortable chair in the ER because something was wrong.

To all the moms who understand that daily living is hard for us, and help us with tasks.

To all the moms who advocated for us to doctors because you knew something wasn’t right.

To all the moms who wake up in the middle of the night when we’re not feeling well.

To all the moms who put our slew of meds together every week. 

To all the moms who remind us to do things when we forget because of brain fog.

To all the moms who have been in pain watching their child suffer, but hid it and stayed strong for us. 

To all the moms who try every single thing to make us feel more comfortable.

To all the moms who make sure we’re able to live the best life we can under the circumstances. 

To all the moms who have held our hand while we’ve been in pain.

To all the moms who have done whatever you could, like traveling to see different doctors. 

To all the moms who drive home and all the way back to the hospital every day because you don’t want to leave us alone. 

To all the moms who listen to us complain, because it’s bound to happen.

To all the moms who’ve spoken for us when we’ve been unable to speak.

To all the moms who have put their own health aside because you think that ours is more important.

To all the moms who have watched scary things happen to us but held it together.

To all of the moms who make sure we are prepared with all our medical supplies before we leave the house. 

To all the moms who would take our illnesses from us if they could. 

To all the moms who take us to appointment after appointment. 

To all of the moms who have waited to do something you needed to do while we were inpatient because you wanted to be there when the doctor came. 

To all the moms who stay up worrying about us. 

To all the moms who have celebrated our little victories.

To all the moms who fight alongside us. 

To all the chronic illness moms.

You are a special breed of human. Thank you for your care, your advocacy, your help, and most of all, your love. Happy Mother's Day.

Friday, May 4, 2018

My Oath to Nurses

This upcoming week is Nurse's Week, and I want all of our nurses to know how special they are to us.

I promise I will never forget how hard you work, hours on end, and I don’t hear you complain.

I promise that I will never forget how thankful I am when you advocate for me while I’m stuck in a hospital bed.

I promise that I will always remember that you’ve witnessed some of the hardest things, and keep doing your job with grace.

I promise to try and be patient and understanding if you can’t help me right away. You are overworked and underpaid.

I promise I will appreciate every single warm blanket you give me.

I promise that I will never take for granted the little things you do to make me feel more comfortable.

I promise that I will never forgot the hard nights I had when you were able to spend time in my room talking to me and letting me vent to you.

I promise I will always treat you with respect. You deal with enough ungrateful or senile patients who mistreat you on a weekly basis. I will always say thank you.

I promise that I will remember all the times you made me smile or laugh while it was hard for me to do so.

I promise I will never forget it when you stand up for me. You’re the one who sees me most, and gets to know me best. When you see something going wrong and step in and help, you make me feel like I’m not alone.

I promise to remember that you’re human too, and can have bad days.

I promise to always appreciate the less glamourous things you do as part of your job, and I thank you for making me feel comfortable as you do them. 

I promise to be thankful when you come check up on me, even though I know you’re swamped with work and running around.

I promise I will never forget the years of hard work and commitment you dedicated to getting your degree.

I promise you will always remain heroes in my heart, because your hard work and dedication to making your patients feel comfortable despite incredibly long hours doesn’t go unnoticed.

I promise to shout out into the world the truth about nurses and their importance.

I promise to never forget that nurses are a special breed of human like no other.

Wednesday, April 18, 2018

The Instagram Page That Is Showing The World What People With Type 1 Diabetes Are Really Made Of

If you’re involved in the Diabetes community, you’re probably aware of Beyond Type 1. But for those who aren’t, Beyond Type 1 is a non-profit organization raising funds, awareness, and education for Type 1 Diabetes.

What made them so well known? Well, it doesn’t hurt that Nick Jonas is one of the co-founders. But the real reason is their incredible Instagram. Every day we’re introduced to a new person with diabetes from all around the world, and they tell us how they are living beyond their diagnosis.

When I discovered their page, I was awe inspired. I went through almost every picture, reading about amazing things people are doing with Type 1 Diabetes. It is truly a wall of warriors, from toddlers to people who have lived with T1D for over 40 years.

There are many incredible things Beyond Type 1 does for the community, and this post is just touching the tip of the iceberg. But it was the first thing that introduced Beyond Type 1 to me, and it’s a great place to start and start to understand their message.

If you have Instagram, I highly recommend following them at @beyondtype1. If you don’t have Instagram, I highly recommend making an account, and checking them out. It is a beautiful community and a daily source of inspiration.

Below are some of my personal favorite pictures from their wall.

To submit your story and photo, click here!

Monday, April 9, 2018

A Lesson in T1D Lingo

Those of us with Type 1 Diabetes have kind of created our own language along the way. This language includes many words or expressions that people outside the community would raise their eyebrow at. This is a little dictionary of some things you might hear us say or see us write.  

Unicorn: When your blood sugar is 100 mg/dL (5.5 mmol/L). We call these unicorns because it’s a pretty magical level to be at. An all in all great number, and when we catch them, it’s exciting. 

Bolus: The insulin you give yourself prior to a meal, or as a correction if your blood sugar is too high. 
Basal: This is the dose that keeps your blood sugar at a good level between meals and while you’re sleeping, always working in the background. 

DOC: Stands for Diabetes Online Community. 

Pumper: Someone who receives their insulin by using an insulin pump. 

MDI: Multiple daily injections. This is what non-pumpers do. 

Diabestie: This is what you call one of your best friends who also has diabetes. I love my diabesties. 

Diaversary: This is the anniversary of the diagnosis date of a Type 1. Why would we celebrate the day we were diagnosed with a life-changing disease? Because we’re celebrating all the hard work we’ve put into keeping ourselves alive every day all year. 

Rage Bolus: Sometimes we do something that we regret later. And that thing is a rage bolus. Which is when you can’t wait the recommended time to let your insulin work, so you end up giving excessive amounts until you see your blood sugar coming down, in a rage. 

“Feeling high”: You’ll probably hear a Type 1 say that they feel high, or that they are high. You might even hear a parent of a Type 1 kid say that their kid is high. We want you to know, this does not mean what it sounds like. It means our blood sugar is high. Which is why someone coined the clever term “I shoot up to avoid getting high”. Giving ourselves insulin will bring it down. 

Honeymoon: At the beginning of a diabetes diagnosis, there is usually a period called a “honeymoon” phase. It’s when our pancreas’ are still working a tiny bit, so we don’t need as much insulin. 

Diabetic Hangover: How you feel after a long, sleepless night of trying to get high and low blood sugars under control. Exhausted, grumpy, and crappy. 

Pricker: This is what we call a lancing device. Because who has time to say ‘lancing device’?  That sounds too fancy. It’s the little tool we use to poke our fingers with to test our blood sugar. Synonyms include ‘poker’, ‘lancer’, etc.

BS: This isn’t the type of BS you’re thinking of. Although sometimes we feel like dealing with our BS is BS. BS in diabetes talk stands for blood sugar. Also known as BG, which stands for blood glucose and means the same thing. 

I hope this clears some things up for the people around us! Until then... we'll keep feeling high until we can get our BS down and hopefully we catch some unicorns.

Monday, April 2, 2018

April T1D Faces of The Month

Even though ambitious 7-year-old Hayden is only one year into his Type 1 diagnosis, him and his family are already making waves in the community.Right before his 6th birthday, mom Jenn took Hayden to the doctor because he was acting extremely irritable and angry, he was having to pee more than 10 times a night, and he was guzzling water like it was nobody’s business. When they got to the doctor, they had him do a urine test, and Jenn thought they were testing for a UTI. The doctor came back and did a finger prick and the meter read HI. He took Jenn into the hall and told her that Hayden had Type 1 Diabetes and needed urgent treatment. Only a year into Hayden’s diagnosis, Hayden’s family started a company called Greater Than.  They are a lifestyle apparel brand who donate a portion of their proceeds to T1D research. They’ve had booths at Type One Nation summits, ADA walks, Padre Foundation events, and JDRF fundraisers, raising money for each. A portion of their proceeds also goes to Type 1 research at Dr Faustman’s labs in Boston, Massachusettes. Hayden just started using an Omnipod, and he’s loving not having to be poked multiple times a day to give his insulin. Jenn also thinks it’s given them better control over his blood sugars.Hayden has a whole crew of loyal supporters! These include his mom, Jenn, and stepfather Steven, his biological father and his fiancĂ©e, and Jenn’s parents who they’re grateful live nearby. Also can’t forget a whole zoo of pets! Hayden says, “Type 1 Diabetes doesn’t stop me from doing anything that I want to do. I can still play my video games, swim, run 5ks and eat ice cream. I’m still Hayden.”

44-year-old Lynette, from Maine, was only 6 when she was diagnosed with Type 1. She was sick with bronchitis, and wasn’t getting any better. She was losing weight, wasn’t eating, and was drinking and urinating a lot. She was in kindergarten at the time, and her parents brought her to the pediatricians. Before she knew it she was in the ER having blood drawn and being loaded with insulin. Her blood sugar was almost at 700 mg/dl. Lynette just celebrated her 38th diaversary on February 14, 2018. In the past few years she has started doing the JDRF One Walk, and loves the sense of community and unity she gets when she’s there surrounded by other Type 1 families. She’s been using an insulin pump for 10 years, and just recently started using the Medtronic 670g pump and CGM closed loop system. When asked about her biggest supporters, she said, “Hands down my husband Rob.” She continued, “I can't even begin to count how many times in 18 years of marriage that man has been woken up in the night by a cgm alarm or me asking for juice to treat a low. He's the best!” Lynette says that T1D doesn’t stop her from living her best life now. She elaborates, “Yes, I'm a diabetic but that's just a part of what makes me, me. I'm also a wife, a mom, I have a close knit family, amazing friends, a great career. There are good days and bad days, and I have learned not to beat myself up about a bad day. Even after 38 years there's trial and error in this T1D life and if I've learned anything it's this; I can choose to be in control my diabetes or it can be in control of me. It's a balancing act but I will not let diabetes win.”

15-year-old Macey was diagnosed with Type 1 Diabetes at 13 months old. She’s really lived most of her life with it! She received the MMR vaccine, and two days later came the excessive thirst and peeing. At the time, her parents were in contact with her doctor who misdiagnosed her, saying it was a reaction to the vaccine. Well, a week later she was lethargic and close to a diabetic coma! She was in the ICU for 4 days as her parents were taught how to take care of her. They started Macey’s Believers as a walk team to raise money for JDRF, and have raised over $170,000.00! Now Macey’s Believers has grown into a non-profit, raising money for research, and to help families with who can’t afford to attend the Friends For Life Confetence by Children With Diabetes in Orlando every year. They’ve been attending the conference since 2005, and Macey says it’s the best! She is grateful for her friends and family who are always there for her. Macey says, “A positive that has come out of T1D is that I appreciate every day!”

22 year old Hunter, from Florida, was 6 when she was diagnosed with Type 1. She was a little gymnast, and her parents recognized the classic symptoms very quickly. Because she was a gymnast the time, she was burning off a lot of the glucose in her workouts so the symptoms weren’t very noticeable until her body couldn’t handle it anymore. Her parents took her to the pediatrician, and luckily he was familiar with Type 1 and knew to test her blood sugar, which was 400. She spent the next 4 days in the ICU. Hunter has been attending and volunteering at the Friends for Life by Children With Diabetes conference since 2003. She also does JDRF fundraisers, and did the Walk to Cure Diabetes Children’s Congress in 2009, where she and some other Type 1 kids got to meet former President Obama, Nick Jonas, and Mary Tyler Moore. She is supported by being on the Open APS Loop System with her pump and CGM, but is also supported by Abby and Sadie, who are both trained service dogs! Her biggest supporters are also her mom and her dad.  Hunter says, “A positive that has come out of T1D is the people it has introduced me to! Because of diabetes, I have these incredible people in my life  - an extended family - who are all there for me no matter what, and I can’t be anymore thankful for them.”

11-year-old Hannah was diagnosed with Type 1 Diabetes 4 years ago. She was sick for a few days, and her doctor did a blood test which revealed a high blood sugar. Now she uses an Omnipod insulin pump. Hannah led and organized a JDRF kids walk at her school, raising over 5000$! She is a youth ambassador for her JDRF chapter. But her favorite diabetes-related activity is the Friends for Life conference by Children With Diabetes that is organized every summer. Her biggest supporters are her family and friends, and her 3 pets; two dogs named Jasmine and Joe (aka “Joe Bear”), and a cat named Molly. Hannah says, “T1D doesn't stop me from doing the things I love. I love art and theater and noone can stop me from doing those things!”

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.