OrdinarilyDifferent

There’s no guide book for when you lose a parent.

From my experience, it seems like it always hurts and it’s always hard. No matter what the circumstances are.

I am convinced that a parent-child relationship is as complicated as it gets. Maybe for that reason alone is it a type of grief that is unexplainable.

No one tells you what to do, what to feel, how to process it.

No one can tell you how to move on, how to continue living your life.

I think that’s probably good long-term. It seems like an intimate and individual journey that people can ultimately only support, not tell you how or what to do.

But right now, it’s really freaking hard. It’s lost. It’s lonely. It’s feeling nothing and everything all at the same time.

I don’t know how to do this. I don’t know how to process, how to feel okay. I’m not surprised by the confusing and conflicting feelings, but I do find myself surprised at how hard it is to get myself to do anything.

The truth is, I feel really selfish. Tonight, at least, that is.

How I’ve interpreted “always” and “forever,” words and phrases like that. I’ve always interpreted them within the perspective of my own lifetime. When my dad would tell me that he would love me forever and that he would always love me, no matter what, I heard that in the perspective of my life, not necessarily his.

To be clear, I think I always assumed (with, of course, the knowing that things can always be different and things happen) both of my parents would pass away before Zac and I. Parents before children. But I never thought about or considered how things would feel or how my perspective would shift if/when they were gone. I also don’t think that’s expected.

I guess I just expected to expect.

I expected to be able to tell, be able to see when they would pass. As if there was a bridge, a loading dock, a regression line. I guess I expected to see it coming and at that point, I’d be able to consider all of these things.

Then he was gone out of the blue. Before I could process the first hour of it.

I never got to process what his words and intentions my whole life, in our closing conversations in the hospital, what they would mean in the days after he was gone. How that would be different than what they meant when he was here.

I always thought the “forever” and the “always” were on my timeline and I’m so sad learning that they were on his.

Did you know 8 is my lucky number? Well, I like to think it is. It was my number for soccer  almost my whole life, it’s in most of my passwords (shhh), and I gravitate towards it. Even in weird things like my alarms, setting timers, etc.

8 years ago my I thought I was watching my whole world crumble as I sat in the doctor’s office hearing that I was being diagnosed with type 1 diabetes.

8 years ago, I knew what the phrase “near death” felt like.

8 years ago I figured out why I had been so sick since I was a baby.

8 years ago I learned that I have type 1 diabetes.

The first couple of years after my diagnosis, I had a lot of questions. If you know me, I hope that made you laugh because I always have LOTS of questions. But those first couple of years, I tried to make chaos orderly, I tried to make sense of the unexplainable. I attempted to control the pain that was suppressing me by cutting my own skin. I sat in the empty sanctuary of my church (I like to think you can’t trespass church), and I asked God why He hated me, I begged Him to tell me so I could fix myself. I asked a lot of hard questions. It was in this time that I first realized that the Christianity I was surrounded by in my high school, at my work, wasn’t the only way to be a Christian. I could believe both in Jesus and in Science, in the Creation story as well as Evolution.

I eventually got to a stage where I was angry, but not really in a rebellious way. I was angry that everything was harder. That there was such a lack of information and understanding that I had to explain myself and justify myself on the soccer field in college, that I was expected to warn my employers and professors and have all these things lined up in case something happened and I had to show I wasn’t lying. I was angry when things did go wrong and I had to sit out, I had to put in extra work to balance my blood sugars then do the normal school work, I had to wake up in the middle of the night to fix lows from evening practices.

So I looked for answers. And found none. I found a lot of answers about type 2 diabetes, but very few for type 1. So I figured it out for myself. I did my own research and have continued that since at Wake Forest where I know I will get to publish my results and if I push it into organizations, can be a great education tool for people with type 1. I know it can make a life-changing difference and will hopefully stimulate more research.

It fired up in me an anger about how our healthcare system is run… or the lack of how our healthcare system is run depending on how you want to look at it. I’ve been questioned numerous times if I’m really wanting to do my PhD where I will do research with Type 1, and while that would be amazing, I believe with my whole heart, I can continue that, I can continue to learn how to do better research for type 1, and I believe there will be a cure in my lifetime so I’m not going to bet my career on something I am thinking will be gone. However, I can take the tools I’ve learned from my type 1 research and what I learn in my PhD program and apply it to groups of people who don’t necessarily have a particular disease, but they’re a particular race, or a particular SES, or a particular gender. I can help minorities across the world.

But the thing that I think I’m still the most angry about? As a patient getting diagnosed, I can’t count how many times the educator person told me and my family that I could live a normal life. But not like, “Oh yeah, for sure she’s still a 16 year old girl, whatever, cool,” but said it so often and in a way that it was hard to believe. Like you’re only trying to emphasize this so much because you know when I walk out of these doors, I’ll be different. Like she didn’t really believe I could live a normal life.

The honest truth, my life is normal in the sense that normalcy is actually non-existent. Have I had challenges because of type 1 diabetes? Too many. Have I been looked at like an absolute freak? For sure. Have people judged me? Daily. And those things are wrong.

BUT I’ve also had extraordinary opportunity.

I’ve learned incredible strength.

I’ve built an amazing relationship with Jesus.

I’ve made connections that hold my heart.

I wouldn’t trade these 8 years for any amount of years without type 1 diabetes (but yeah please keep working on a cure).

After I got diagnosed, I went on to play college soccer, got loved and accepted by amazing friends, changed a policy at an event place, got to get my Master’s at Wake Forest, took over and fought for policy change for insulin at BCBS, got to work and write for an NIH grant with Wake Forest, Tufts, and Harvard, and am now getting my PhD at the top program in the country. It was hell at times, but SO. WORTH. IT.

So when you hear the educator person tell you that you can live a normal life? Tell them you can live an extraordinary life.

To my friends, my words will never amount to how much I truly love you. I’ve been incredibly blessed with all of you who hear me, see me, and try to learn.

To my brother, 8 years ago, I’m pretty sure you hated me for a few days because you had to move by yourself, but you never showed me anything but love and grace. Thank you for being my rock and my best friend.

To Bill, you walked into a family and just a couple months later, everything changed. You chose to go to all of the class. You chose to recognize the pain and the hurt. You chose to give me shots. You chose to support my research so much that you read my thesis! Most of all, you’ve chosen to be there for me and love me like your own. To be chosen to be loved is the best gift you could ever give me. I love you.

To my dad, there hasn’t been a phone call you haven’t answered in the middle of the night. When there’s something I just have to say or get out, you listen. When I need to just listen, you talk. When life doesn’t make sense, you tell me it shouldn’t, and then you help me get on a path to figure out what I can on my own. I love you with my whole heart.

To my mom, I am a damn good diabetic, but I am solely because of you. You will never get enough recognition for what you done, what you’ve sacrificed, what you’ve dedicated for me. To this day, you still treat my diabetes like a part-time job and I am amazed at your dedication to me living my best and healthiest life. I will never be able to thank you enough. I love you to the moon and back.

Lucky number 8,

Cheers

On July 7th, we lost my grandmother, Ma, my dad’s mom. She passed somewhat suddenly. She was in poor health, but she wasn’t in a near-death position as at least I typically think, in the hospital, on hospice, on a ventilator, etc. She had a stroke one day and passed the next.

My grandmother lived in St. Louis, MO. At the time of her passing, I was in North Carolina, my dad was in Alabama, and my brother was actually driving through Tennessee on his way to visit my dad in Alabama. Most of my extended family lives in or relatively close to St. Louis with a few others living a few hours away.

She passed on a Tuesday. My grandfather, Pa, needed closure so my family pushed on with the funeral which was on Friday, July 10th. My dad had been asked to speak and I had been asked to sing at the funeral.

Given the circumstances, my dad, brother, and I were unable to attend my grandmother’s funeral. 

I am so thankful that my brother was already on his way down to Alabama, so so thankful. I cried over my grandmother’s death. But I cried more over the fact that I couldn’t be there for my dad. I cried more because I couldn’t be there with my extended family who I knew was hurting and grieving. 

I guess I’m thankful for how advanced we are in technology because my family was able to put the funeral on Facebook Live so that my dad, my brother, myself, and others could watch the funeral without being there. I’m thankful that my uncle was able to read a writing on behalf of my dad. I’m thankful that I could send the song my grandmother wanted and have it played at the funeral.

But did you read that? We watched the funeral on Facebook Live. FACEBOOK LIVE. We said good-bye and celebrated and grieved the life of my grandmother, my dad’s mother, on FACEBOOK FLIPPING LIVE.

I’m sure I’ll have people say and ask.. well why didn’t you just go? You could be safe, why didn’t you go and stay socially distanced and wear a mask? You should’ve been there. But multiple people from that funeral have tested positive for COVID and I’m so glad that we didn’t go. But I shouldn’t be glad. Not going shouldn’t have been the better and safer option for her family.

I sat on the porch of my mom’s house, by myself, and watched my grandmother’s funeral on a live stream.

To this day, I still haven’t hugged my dad. Or my aunts. Or my cousins. I haven’t been held. I’ve listened to my loved ones cry over the phone. I haven’t grieved, you know? I haven’t been able to sit in a room with everyone and laugh and cry as we talk about memories. I haven’t been able to wrap my arms around my family who is feeling the weight of the loss of our loved one. I haven’t been able to sit with my grandfather as he wraps his mind around his new life. I have not been able to grieve fully.

My dad wasn’t able to be at his mom’s funeral. He wasn’t able to be there for his dad or his sisters. He wasn’t able to be there to support his family. He wasn’t able to say good-bye. He wasn’t able to hug his nieces and nephews.

I hope and pray that one that we will be able to do these things. Maybe even more so, I hope and pray that the time between now and then, we can each find a garment of comfort and peace. But the thing that I hope and pray the most about?

I hope and pray that the families of the 138,767 individuals and counting who have passed from the coronavirus, and the families of those who have lost their lives for other reasons during this time, find a fragment of comfort and peace. 

To those families and loved ones, my heart goes out to you. And I understand your frustration and anger. Had we handled the coronavirus as many other nations, we wouldn’t be here still today. Had we had federal laws and regulations such as wearing a mask from the beginning, we wouldn’t be here. So I’m angry too.

Because no one should have to grieve from a distance over something as simple as wearing a mask.

March 6th was the last day of in-person school before Spring Break, during which the university shut down for the rest of the semester. Before my students left for Spring Break, I had a conversation with them about the possibilities of closing as the university hadn’t said anything but schools were beginning to close across the country. I was actually on my way to a wedding in south Alabama, eating at an Olive Garden with my dad the next Wednesday when we got the email that we wouldn’t go back to being in-person.

I got back home to Winston Salem on Monday, March 16. I didn’t go inside of a building until April 29th after I defended my thesis and had to clean out my office. I didn’t go inside of a grocery store until last week because I had to move in with my parents for a little bit and there is no delivery service at their grocery store.

I watched as my friends continued to have parties the first few weeks of the shut down, I watched my friends find any excuse to go out and be around other people. And I get it. I bet at some point, probably many times, we’ve all said something like, “Gosh, I’m not sure how long I can do this,” and yet I’ve watched some people cave to this thought and some people find it in themselves to do the hard, not fun thing.

As the country has opened back up, I’ve watched my friends and loved ones jump in the car and head straight to the beach, race to the bars and restaurants, and be confused, disappointed, and hurt when I don’t join them.

As someone with an autoimmune disease, I don’t view wearing a mask as an option, an accessory, or a joke, for myself or for you. As someone who is high-risk for reasons completely out of my control, it’s hurtful to watch people I love and care about not do the bare minimum so that we can all safely hang out and do fun things together at the soonest time possible. As someone who has been in almost complete quarantine for 3 1/2 months, it’s hard for me to hear you say you just couldn’t bare to not go out any longer. Because truly, you could have. 

As cases continue to rise, it’s hard for me to understand that you are able to rationalize going out, having parties, living ‘normal’ life even though you have no idea the amount of people you could be putting at risk. Because the people at the grocery store not wearing a mask, they have no idea that I’m at a high-risk, but they’ve made a choice for themselves and for me.

When you don’t wear a mask, I hear you saying that your slight discomfort is more important than my life. 

When you don’t wear a mask, I hear you saying that you don’t care about anyone but yourself and your own personal risk.

When you don’t wear a mask, I hear you saying that you will feel nor accept any responsibility for you exposing others even though it is your choice.

When you throw a party with a bunch of people who have been all over town, I hear that one party is more important than the several lives you could impact without your thought or consideration.

When the federal government gives no overarching rules and leaves it to state and local governments to handle even though travel and the crossing of state borders is occurring, I hear that we are a selfish nation that is incompetent and is lacking leadership.

I, in no way, am minimizing the annoyance, frustration, and discomfort of wearing a mask, quarantining, and social distancing. Honestly, it sucks a lot.

But what I am doing is saying that those things are smaller than peoples’ lives. I am saddened that people I know, love, and care about are not willing to deal with discomfort if it means that more people can live.

I also believe that at some point, every person, or the grand majority of people, will be exposed to the coronavirus. And I am so glad that not everyone will have a bad case, and happier that some people will not even have symptoms at all. But I do know that for myself and so many others, that it’s unlikely that will happen. Hospitalization is very likely, heightened symptoms will likely occur, but my goal is for this to happen when the hospital is not at or almost at full capacity so that it will not cost me my life to get groceries, go to work, etc.

So from someone who had no control over the unfortunate circumstance of getting an autoimmune disease that makes it more likely that I will contract the coronavirus and then more likely to have worse symptoms with the coronavirus, please do the bare minimum. Please wear a mask, please consider that your decisions are affecting so many more people than just yourself, please know that we all want to go back to normal so stay home when you can, please socially distance, please don’t make excuses for yourself, please make decisions that allow the most people to live.

With love and hope,

HP

This 30-day challenge of writing a post per day for type 1 diabetes has been the most fun challenge! Type 1 diabetes completely changed me and it’s been a joy to share my story with so many people.

These 30 days has challenged me to think about diabetes in a different light, each day. It has gotten me to have more, and more complex conversations than before. It’s also brought me to wonderful conversations with you all and that itself has been the biggest blessing.

Thank you all for creating such a fun environment for my words. For those of you who have been there since day one, I can’t tell you how much you mean to me. For those of you I’ve met since, thank you for accepting me and loving me unconditionally. You’ve all been the most incredible support system I could’ve ever imagined myself having. From teammates, teachers, coaches, random people who see me messing with my pump, those at JDRF, and everyone in between. I love you all so very deeply!

To type 1 diabetes, thanks for always sticking with me… literally. And for changing my life and allowing me so many new perspectives. I wouldn’t have grown as much as I have without you.

Thank you for your encouragement, your support, your love, your grace, and your friendship.

Each chapter of JDRF puts on a Summit each year. The chapters of JDRF are organized by geographical region and the summit is basically a conference that you can go to with multiple informational sessions that you can choose from so you can decide what you want to learn about most. I got to go to two different Summits last year, one I presented in for the Triad chapter and one time I went to one with my mom and step-dad in Charlotte just as an attendee.

The one in Charlotte was much larger and at the beginning of the day, the host had everyone write down a question they had about diabetes on a piece of paper, then had a crumble it up, and throw it somewhere in the room. The paper ball that got thrown to me…

How has diabetes made you strong?

Geez. Hit me right in the heart. I had asked some lame question and I got such a good one. I really jipped the guy who got my question.

I’ve been thinking about this question for almost a year now. And I still don’t feel like I’ve totally got it down, and I think it’ll constantly change as I move on to new chapters in my life, learn more about myself, and see how diabetes plays a role in my life as I move forward.

Let me get one thing straight: Diabetes is the worst. BUT. I would never change my life to not get diabetes.

I wouldn’t wish type 1 diabetes on my worst enemy, but I wouldn’t change it about myself either. I want a cure, but I’m so PROUD of who I am today and so much of that is because I have type 1 diabetes.

I am strong.

It might depend on what your definition of having strength may be to agree or disagree about how diabetes has effected my strength, but my soul and my heart are strong and that’s because I’ve had to be.

You know how people say or joke about just throwing someone in a pool of water and they’ll learn how to swim really quick? Or at least that’s the hope? Well, that’s kind of what it’s like to get type 1 diabetes. But it’s every day, sink or swim, live or die.

Diabetes has made me strong because I CHOOSE to live every day, and I choose to live a good life. I’ve spent a lot of time writing about the choices necessary to make to stay alive with type 1 diabetes, and making that choice every day to put a needle, or multiple needles,  into my body makes me strong.

Diabetes has made me strong because I have suffered. I’ve told you all about my low points in getting my diagnosis, but I climbed out of it. I chose to not let type 1 diabetes define me or restrict me or dictate my attitude or my life. I am strong because I control my diabetes and I do not let it control me.

Diabetes has made me strong because it has given me an ability to become more empathetic. I have experience with depression, with life questions, with not understanding, with hating myself, with thinking God hated me, with sickness, with chronic disease, with being drowned out by the chaos and commotion of life. So when I look in the eyes of a child living with childhood cancer each summer, no, I don’t know what that’s like. But when they ask me about God, when they realize they fit in, they don’t stick out there, when they ask really hard questions, I empathize with them.

Diabetes has made me strong because it has given me the opportunity to own my story. I had been through quite a bit before I got my diagnosis, and as I learned to accept myself with type 1 diabetes, I learned to accept myself throughout my entire life. I found that relating to others and sharing my story of diabetes made me feel like at least I was a small glimmer of hope or reassurance or understanding for others. And eventually, I realized it didn’t have to stop there. I could relate to more people through divorce, sports, family problems, and more because of other experiences as well and I think that today I’m stronger because I’m not ashamed of my story, I’m proud of who I am and I’m proud to own my story. And I could also let others own their stories as well. To empathize with them, listen to them, love them as they told me their experiences’. I truly believe it’s one of the most powerful things to be able to look at someone and say that you don’t completely understand what they’re going through, but that you hear them. To let them own what they feel as it’s individually unique, but to understand general feelings, to let them process verbally, because owning something traumatic is healing.

Diabetes has made me strong because it has given me a strong faith and a strong relationship with Jesus. I remember the moment, laying in my hospital bed and I’m not sure where either of my parents were, but I was alone. I could look outside and see people walking on the sidewalk, I could see cars passing by, and I chose to look away, and felt myself sink wondering why God had chosen to do this to me and my family. Wondering what I had done wrong. And in finding those answers, I found my best friend in Jesus. I found a foundation to stand on when the Earth was shaking. I found a love that I’ll never be able to fully understand.

Diabetes has made me strong because it has made me love harder, more fully, and more wildly. I remember sitting in the hospital still feeling like I wasn’t sure I could actually live, and I regretted so much how I had made others feel or had not directly told others how much I cared about them. I told myself that if I did make it out of the hospital, I’d never hang up the phone without saying I Love You. I’ve kept that. Diabetes has pushed me to accept people as they are, as they come, and to love them as closely as I can to how Jesus loves me/them. I opened my heart instead of continually building walls up. I softened myself instead of hardening myself. Diabetes has made me love people who are different than me, who believe differently than me, who I don’t know, and those who have hurt me. Diabetes has given me more people, friends, and family because of being able to love than I ever could’ve imagined.

So yeah, diabetes sucks, but it’s also arguably one of the best things that’s ever happened to me. I’m stronger because I have type 1 diabetes, and I can’t wait to see how I continue to grow because of it.

And thank you to whoever threw that paper at me, it’s been a wonderful reflection.

HP

Mental Health, a topic that for some reason we like to avoid. We like to make it seem like we’ve got it all together even though we love when the person we think has it all together admits that they don’t. As a species, I don’t believe that we are meant to “have it all together.”

I interact with a lot of older people who are living with typically multiple forms of chronic disease. And I try to say how great it is to have a positive attitude, to still see the bright side of life, but I also try to be as intentional as possible when I can tell they’re forcing it. I try to say that YES, it does suck. It’s okay to not be okay. It’s okay and valid to be sad, mad, hurt, any feeling you have, is valid. The thing about any type of chronic disease is that it’s never not on your mind. It’s an AKWAYS. And that’s a big adjustment and lifestyle that those who aren’t dealing with it, don’t see.

Today, people tell me how great I handle having type 1 diabetes. They tell me how great it is that I can smile while I do research to make others’ lives better with this disease. They tell me how strong I must be so stab myself… to inject my infusion set.. to prick my finger. And you know what, they aren’t wrong.

But that’s not where I started.

The reality is that I went through a lot of mental health issues around my diagnosis. I truly with all of my heart believed that God hated me, that I was being punished for not being good enough, that I had done something wrong. How could I get a disease that was genetic if it wasn’t in my family at all.. that was an intentional dig from God. Or so I thought.

I felt myself go numb. I was depressed. I was also pretty high functioning which is not a good situation. Because I smiled, I laughed, I hung out with my friends, I played soccer, I still made good grades.

It was a lot to process, the ultimate feeling of failure. I failed so miserably even God hated me.

I was numb from my pain. Recognizing my numbness while also recognizing that I was numb from the immense pain in my heart. I craved to control the pain. If I was going to hurt, it was because I made myself hurt. Not because of the needle, not because of family problems, not because of God, me. I wanted the pain to be because I did something that I could see and feel and do, it was my choice.

So I took a piece of sharp plastic I found on my floor, and I caused my own pain. To see how numb I was. To mask all the external pain I couldn’t control as if I could. I never cut deep, not enough to really see, I cut just enough to break skin, to see my human-ness.

Something I’ve discovered about myself in the past couple of years is that it really takes me a while to wholly process my emotions and figure out how I feel and why. So my mom had me in counseling with some lady who apparently specialized in diabetes. I hated it. The lady was super nice and kind, I liked her, but I wasn’t ready to talk. I needed it to be my pace and it made me more angry. I know now where my mom was coming from and appreciate her effort to do the right thing for me.

I needed time to even figure out exactly how I felt. I didn’t cut for a long time, but I did cut.   And I realized that my urge to cut that continued wasn’t for the cut itself it was at the core about being able to control the pain I was feeling and where it was coming from.

The moment I realized God didn’t hate me, when I realized that God was actually walking with me each moment and step of the way, weeping with me, the urge stopped. And that doesn’t mean that everything was all good in one second, it’s been a long process. But I took a lot of time to not be completely okay. And I worked on myself and my relationship with God devoutly.

So, it’s okay to not be okay.. I honestly believe it’s normal, it’s good to go through those emotions. As long as you’re going through it, not sinking and drowning in it. To parents, I can only imagine your own path of mental health as your child goes through this. I can only imagine the pain and questions and anxiety you feel. And the only thing I can say is to listen to your kid. Ask what they’re thinking/feeling, and respect it. They’ll do better if they go at their own pace.

Be gentle with yourself and this season of life. Ask for help, receive love, and keep taking baby steps.

HP

I’ve talked about this a few times on this blog, but for those of you who don’t know, I’ve bending research with type 1 diabetes and exercise since my Junior year of Undergrad. And a lot of people ask why that’s important… Well, for one, bold question that I respect. But also, of course much of the money that is given towards T1D is going towards finding a cure. And I do FULLY believe that a cure will be found in my life time, and probably in the next 10 years or so. But for the time being, and for the time of transition for people who won’t be able to get whatever said treatment for a cure may be, how can we make T1D better? And I believe a big part of that is exercise.

I did my research in undergrad looking at the onset of lactate threshold in type 1 diabetics versus non-diabetics. Lactate is a byproduct in energy production and is typically created more quickly than it is utilized (causing a sharp increase) when the exercise is at a higher intensity or shifting to a more anaerobic type of exercise. If the body is metabolizing correctly, and how we have assumed it does, this is more carbohydrate utilization. In my research, we found a significant difference in the timing of the onset of lactate threshold in people with type 1 diabetes versus people without diabetes. Meaning, people with type 1 diabetes were hitting their lactate threshold significantly earlier in a person without diabetes even when matched for demographics.

So I came to Wake Forest and have had the pleasure and opportunity to do a follow-up study for my thesis. My study now will be analyzing lactate as well, but will be focusing on what is called RER, or Respiratory Exchange Ratio. RER can be an indicator of what fuel source is being utilized for energy. The theoretical range for RER is 0.70-1.00, though many people have a resting RER of about 0.80 and far exceed 1.0 when participating in high intensity exercise. The lower end of that range indicates more fat utilization for energy whereas the higher end of that range indicates carbohydrates being utilized for energy. So why I care what energy source is being used? Because based on my previous study results, lactate being produced significantly earlier, it may be that the body is perceiving higher intensity exercise when in reality it is not that high intensity, or the body may not be metabolizing carbohydrates as a person without diabetes. The rate at which RER increases, as well as obtaining perceived exertion measures, can help us differentiate between those two options. Ultimately this can help us better prescribe exercise for a population that has a much better mortality rate when exercise is included in daily life.

I was a little worried going into my thesis because there hasn’t been much research on type 1 diabetes. Especially type 1 diabetes and exercise. Much more of the research has been focused on type 2 diabetes. I was ECSTATIC in October when I re-researched the epidemiology and more qualitative studies for type 1 diabetes and the SEARCH study has been going through multiple publications, shining light on the fact that TYPE 1 DIABETES IS NOT JUST GENETIC!! This research is opening the door for several others studies as well which is a w e s o m e. So stoked.

But what does that mean for me? Will I always do type 1 diabetes research?

I’ve been talking with a few PhD programs over the past several months, and it took me a while, but I’ve finally figured out exactly what I’m wanting out of pursuing another degree. And like I said before, there aren’t many people doing type 1 diabetes research.. especially with exercise. Most of that research is actually not evening done in the US. And I’m not willing to commit a 4-5 year program to a very specific disease if it’s not in an over-arching field that I love.

I had a phone interview with a school a couple of weeks ago and the professor I was talking with, like pretty much every other, was looking at my CV and said, “Well we don’t really do any type 1 diabetes research. None at all or anything really like it, is that going to be okay?” Because I have two studies where I’m at least a student Co-PI, so two of my major highlights on my CV are centered around T1D research. And my response felt so natural.. to say, “Yes sir, I completely understand that going into this program. Not many people are doing that research and I don’t want to just now be beginning my career and trying to focus on a disease that I 110% believe will have a cure by the time I get my first job as a professor somewhere, then I’d be out of funding and questions.”

Asking questions and being involved with JDRF will ALWAYS be a part of my life. And worst case scenario, there is no cure in 10 years and I still have all the tools to perform the research to answer more questions revolving around T1D. So yeah, a big part of my life will always revolve around type 1 diabetes, maybe even more of my research, but I’m SO confident that there will be a cure while I’m still working that I’m not willing to bet my career on it.

Cheers to that and turning Type One into Type None,

HP

Most people don’t associate the feeling of being scared with type 1 diabetes. And I get it, most people don’t know what it’s like. They think about being sad or mad or confused. All those things are true too.

But imagine learning that your body was killing itself. That your own being was trying to destroy your life. That when you tried to do something good, it fought back with something bad. Imagine learning that without you knowing it, your body was literally deteriorating.

Now imagine there’s not a cure. Nothing to completely take away the deterioration. That you’d have to. fight your body breaking itself down every minute of every day.

Yeah, it sounds sad. It sounds like it would make you mad and confused. But it’s so scary.

I’m a great diabetic. You’ve seen me write this before and I will continue to do so over and over and over again. Because I’m dang proud of myself for it.

But I’m also human. I make mistakes, I mess up. Technology isn’t perfect like we sometimes think and there are sometimes problems and hiccups with the system that is out of our control. So relying on myself, an imperfect, flawed human being, and a piece of technology that was made by another imperfect, flawed human being to keep me alive? Yeah, it’s scary.

The first thing I was scared of was not making it inside the hospital. I vividly remember my mom being scared and we were walking from the parking deck to the emergency room and I was carrying a blanket and a pillow and a bag I think. My mom had the rest. And she wanted me to be better ASAP so she was asking me to hurry. And I remember thinking to myself as I looked at this weird, red statue, just one step at a time. Just make it, Hannah. Watch the weird statue and then watch it pass you. But there was part of me thinking, I’m not sure I can actually do it.

Then, my fear turned to the shots. I was in ICU a while and was getting medicine put in me there, I didn’t have anything to think about. I remember being in and out of consciousness,  and I honestly have a lot of blank spots. But I remember waking up in a new area and I was about to be transferred out of ICU and into a room and the nurse said it was my turn to do it. I was the wimp before that still cried and was terrified of the flu shot. I couldn’t do it to myself! And when I made it to my room, my nurse sat on the edge of the bed with me for forever, as I built up the courage to do my shot. Each time a little quicker, but each time being scared of having to stab myself with a needle multiple times a day for the rest of my life.

Then, I was scared about my family. How would they deal with this? Would they be angry that it was one more thing to deal with? What had I don’t wrong? Was God mad at me? Sometimes I think my family still is dealing with it. And that’s fair, me too. Thankfully, they understood more so than I that I was not to blame. I had no fault, and they weren’t angry with me. But this fear, the fear that I had done something wrong, that God was angry with me, that I would be an additional burden on them, lasted a long time, years actually.

Then, I was worried about everyone else in my life. And soccer. And school. I was scared of  the everyday. How would people look at me? What prom dress would I be able to wear that wouldn’t show my diabetes? Would people judge me? Would they be scared of me? Could I play soccer? Would my coaches understand? This still rings true sometimes. Just a little, but still there. I don’t want my diabetes to ever get in the way or scare someone or not be able to do something because I’m low. But I’ve also accepted that that’s how life goes sometimes. And taking care of myself and educating those around me makes me feel much better about it.

But what am I scared of today? Today I’m scared of my imperfection. That my being human could cost me my life. One mistake.

Today, I’m scared that my pump will shut off in the middle of the night. Today, I’m scared that I’ll take my meter out, set it down, and leave it somewhere. Today, I’m scared that on my flight in two weeks, they won’t let me go through TSA or they’ll take my insulin. Today, I’m scared I’ll go somewhere, run out of snacks or forget them, and drop too low and won’t be found. Today, I’m scared that it may not matter what a great diabetic I am 99% of the time, the 1% could ruin it.

That’s my life. That’s the life of every mom, dad, brother, sister, and person with type 1 diabetes. The fear never goes away.

BUT. Learning to live outside of that fear is imperative. Living knowing there are things outside of your control ALWAYS instead of living with that fear controlling you.

So friends, yeah, I’m still scared. But I won’t let it control me.

HP

Podcasts are the millennial audio books is what I’m told; however, I love listening to a good audiobook on a long car ride or listening to a podcast when I get tired of hearing my music in the car. One podcast that I’ve been listening to recently is called Science Vs. It’s on the apple podcast app is you look it up. They pretty much talk about controversial topics around healthcare and the medical field primarily. It’s basically really funny and makes you borderline uncomfortable to listen to because of the difficulty of the conversation. But that’s good!! We should be talking about the hard things.

A few months ago, one of the professors from Berry sent me a post on Instagram that this podcast was looking for people with type 1 diabetes to interview. So I sent them an email and said I’d be happy to talk with them,I love sharing my story hoping to educate and relate to as many people as possible. I ended interviewing with them and they reached out to me a couple of weeks ago to let me know that my interview was picked for one to actually be used on the episode. SO COOL. My claim to fame.

From what I understand, the episode is comparing the healthcare system in the UK to the healthcare system here in the US. They chose to use type 1 diabetes as the disease to compare how everything is handled. We talked about insurance, coverage, the cost, we even talked about other barriers, research, the social aspect. I have no idea what part of my interview will be used, I have no idea what other people said, I have no idea what is going to happen.

But WHAT. A. BIG. STEP. This major podcast is getting type 1 diabetes out there!!! They are basically going to say how HARD it is to get insulin, how expensive it is, how people RATION IT!!! They are exposing this disease that CANNOT BE CONTROLLED but the patients with it are TORTURED by insurance, lack of knowledge, policies, and so much more that people don’t realize!!

Y’all. I’m so excited. The episode is releasing December 12th and will be on Science Vs. Let me know what you think!