IBD May Be a Beast, But It Is Worth Fighting

I was at the top of my game having just graduated college with a Wall Street career all lined up and BAM, just like that, the colitis hit.

At the tender age of 22, when my life was just supposed to be beginning, my life became a perpetual case of where’s the nearest bathroom and having to bolt to avoid accidents. Between wearing diapers and trying to date while popping pills and using enemas, I began to realize how tenuous life is. It was a scary proposition because my dad passed away at 39 years old from a wicked case of Crohn’s that turned into colorectal cancer, and his sister quickly followed suit. And here I was, barely awake from my first of 100+ colonoscopies, hearing the words ulcerations and inflammation thrown around. It was unnerving and terrifying all at once.

Today, 12 years, 20+ surgeries and hundreds of procedures later. I’m happy to say that I’m still alive and kicking. I continued working in investment banking, taking time off to mend from surgeries until the stress, the fatigue and constant flare-ups did me in enough times. A decade ago, after returning from my 24th birthday in Cancun, I developed a horrible case of food poisoning and I was never the same again. I took antibiotics, which gave me c.dificile, a debilitating infection caused by antibiotic overuse. It resulted in 15-20 bowel movements a day, watery diarrhea, nausea and dehydration.

And that c.diff subsequently brought about a never-ending colitis flare that lasted 8 years. I cried in my former gastroenterologist’s office as I had an accident in his hallway and as I continued to lose weight and along with it, my sense of self and personality. At the end of 2007, I was 135 lbs. By mid-2008, I had tried every medication and alternative treatment under the sun, lost 50 lbs., and was being fed by an intravenous PICC line in my arm. I was dying.

I was rushed to the hospital where my surgeon removed my colon on the 4th of July. As I found out later, he and his boss, the chair of colorectal surgery,

…were unsure I would survive the operation. Heck, I was certain I wouldn’t.

But I had no choice. I was told death was certain if I didn’t have surgery. As Independence Day came and went, I woke up alive and very thankful to no longer be dependent on a disease-ravaged colon. And overnight, I found myself a new bff, my stoma Snuffleupagus, as named by my ever-devoted husband.

It took about 2 months of receiving IV nutrition and antibiotics before I began to eat more than a morsel of food. And how can I forget spending my 25th birthday in the hospital with yet another bout of c. dificile? I recovered nearly 6 months later and went on to have some more surgeries so that my surgeon could fashion a j-shaped pouch from my small intestine, which would allow me to defecate like a normal person again. Before long, I developed pouchitis, a new brand of inflammation that hits in the j-pouch and causes IBD symptoms of bloody diarrhea 20 times a day.

After several months of on-again, off-again pouchitis, I was left on a rotation of antibiotics for a few years. That was until the pouch began to fistulize, or burrow holes into other organs. My diagnosis was changed from UC to Crohn’s. I developed a total of 5 rectovaginal abscesses that became full-fledged fistulae, which resulted in UTIs galore along with immense pain and bleeding, in addition to multiple surgeries. Along with it, I developed a whole host of extraintestinal joint and dermatologic manifestations of the Crohn’s.

To allow the fistulae to heal, I was yet again rushed to the operating table and was given a stoma. I was again fed by IV lines as I began to retry biologics; when none of them worked, I was told to have the pouch excised. I had exhausted all my options and fought so hard for 6 years to keep that pouch. I felt like I had failed.

My pouch was removed, and I was left with a large wound and a permanent ostomy. Except the wound never closed like it was supposed to. I bled for months and went for a second opinion at the Cleveland Clinic where I was told that the Crohn’s had continued, and pieces of j-pouch and rectum were still inside. There was a massive honeycomb-like abscess in my pelvis where the j-pouch once was. According to MRI reports, a pelvic fistula had formed and was headed for my spine. I was told it could paralyze me. Major corrective surgery was my only option. I was given a PICC line yet again to deliver IV antibiotics and restarted Adalimumab.

I went for a third opinion at Mayo Clinic where the surgeon wanted to try a new technique. He re-excised the pouch 3 more times so that no pieces of bowel would be left behind to cause the Crohn’s to spread. He left a wound the size of a small football and I was left with a wound VAC attached for 4 weeks thereafter. Every alternate day I had a procedure under sedation in my room to debride the wound. The VAC was pulled after a month and I was left with a 3-inch deep wound for my mom and husband to pack.

After such excruciating pain, I thought I was out of the woods, but another RV fistula was found, which was perplexing because I had no rectum left. It was just a hole, something I was told had only been seen twice before. My doctor prescribed antibiotics, 6-mp and a double dose of Ustekinumab, which was still in trials for Crohn’s. It took several months of misery, but the wound finally closed, and the fistula was untraceable.

Come 2016, the word “remission” was being thrown around for the first time in my life. And I didn’t know what to do with myself. When a disease snatches one’s womanhood, how does one begin to resurrect oneself?

Nevertheless, after 3 near-death experiences, I am thankful to be alive and for every single surgery and every single breath. Every time I have fallen, I have picked myself up higher than before. And that is my very own personal miracle and my greatest achievement to date. My medical staff, my friends and family and the Crohn’s and Colitis Foundation are my rocks, my backbones and a source of constant support. Every time I lose hope, they help me stay afloat.

A year and a half later, yes, I have 8 new chronic diagnoses to manage, but I refuse to go down without a fight. My battle with Crohn’s has given me a newfound appreciation for life, a joie de vivre, like no other. Not a single day goes by without me remembering how far I’ve come and how much life I have yet to live. I may not be able to work but I am able to volunteer in between health crises. Co-facilitating the Foundation’s Women’s Support Group has given me a voice, a platform to raise awareness for these awful diseases and help women like myself advocate for treatment and maintenance of care.

IBD may be a beast, but it is worth putting up a fight for your loved ones and most of all, for yourself.

IBD may derail our careers, educations and relationships but it cannot take away who we are at our core. We must keep on fighting the good fight and never lose hope.

Here I am today, continuing to fight in the memory of my late father, for my dear mother and husband as well as all the friends who have stood by me along the way. I fight for new treatments to be developed and for a cure someday. I fight for you and me, for all of us at the Crohn’s and Colitis Foundation.

Real Talk with Dave: What Some Like to Call “Dia-versaries”

Hi there! Today is my 9th year of living with Type 1 Juvenile Diabetes. Today is what I call my “Dia-versary”. I have lived almost half my life now with this chronic disease and I am here to share my experience of the last 9 years and what it has truly been like. I’m David and this is my story.

On October 13, 2008, I was 11 years old and had just started 6th grade, when one Sunday morning, as I was getting ready for the day, we got a phone call from the doctors telling me that I had to come straight to the doctors office, as my blood work I had gotten done days before had come in and the results were what nobody ever wants to receive. Being only 11 years old, I was absolutely terrified as my mom and I rushed over to the doctors office. I had no idea what to expect.

As we sat in the doctors office, a nurse came in and broke down the bad news to us. I had been diagnosed with Type 1 Diabetes.

It was like someone had punched me in the face with such horrible news. It was as though life had paused and everything went blank for a moment. As the nurse and my mom tried to comfort me and stop me from crying my eyes out, I couldn’t help but think how my life was over. But that wasn’t the case.

As I rushed back home to grab a few items from my house to keep with me for the next 4 days during my hospital stay, I was a ball of mixed emotions: nervous, scared, confused, lost, sad, and depressed, just to name a few. Then, my parents and I headed back out to the hospital, where I was immediately admitted, feeling as though I didn’t have control over my life anymore. Being hooked up to an IV machine, getting my fingers pricked for the first time, and having to somehow be okay with all that I was facing right then and there was very stressful and overwhelming for me.

Over the next few days, I had to learn how to check my blood sugar, take insulin injections on my own (which was such a crazy concept to me at the time), count carbs, and regulate my blood sugars.

Through all that, I had some family come in and visit with me from time to time, as well as this amazing therapy dog that honestly was the highlight of my stay in the hospital. Through all that, I felt like I had seen it all. I had seen pain, sadness, happiness, love, and support. All that was packed into a short few days, but I am honestly so grateful to this day for my amazing doctors and nurses that helped me since then on educating, comforting, and healing me (essentially).

Fast forward to today, October 13, 2017. I am alive, I am well, and I am at peace with my health. I look back to my time in the hospital, that dark and challenging time in my life, and it just reminds me of how blessed I have been within the last 9 years. Within these past few years, I have grown, matured, formed a sense of responsibility for my health and wellness, and found happiness within myself as I try and cope with the fact that is Type 1 Diabetes. I have been ultimately blessed to have formed my little Diabetic community via Instagram and make some really amazing friends through it, as we have something to bond and connect over, Diabetes. It truly has become a blessing in disguise and I am (as weird as it may sound) happy that I was selected in this life to have T1D as it has definitely shaped me to be the person I am today. Don’t get me wrong, I would give up this disease in a heartbeat and I am ready for that cure, but until then, I feel as though I am in the right place. Had I not been diagnosed with T1D, my life would have been one big mess and my health would have been the opposite of what it is now.

So I thank you all for your constant support and love towards me and the Diabetic community as we face our daily challenges and struggles.

The Diabetic community is amazing! I don’t feel alone anymore as I have the support I need to deal with my Diabetes because of all the amazing connections out there for us Diabetics.

I am sure of good things coming our way in the near future, but until then, this disease is manageable, livable, and treatable. We are all capable of battling Diabetes daily and proving all the stereotypes wrong. We are the ones who are in control, Diabetes should never get the best of us. Live your purpose and fight like no other, because in the end, when Type 1 Diabetes is a thing of the past, we will be able to say we are survivors and warriors!

Now if you’ll excuse me, I have to go and celebrate my Dia-versary!

Live well,


Coming of Age With Chronic Illness and Mental Health

Usually, there’s more than one thing going on in life. But sometimes you or the people in your life put all of the focus on one thing.

For me, that focus has often been my type 1 diabetes (T1D). I’ve done this, but so have the people in my life and the rest of the world around me. I firmly believe this caused some other things to get missed or not acknowledged enough while I was growing up.  

I was diagnosed with T1D when I was seven years old. I wasn’t diagnosed with ADHD, anxiety, and OCD until was 22, and I wasn’t diagnosed with PCOS and endometriosis until I was 23. One thing from these new diagnoses that remained consistent? It’s obviously been around for awhile.

My anxiety, ADHD, and OCD diagnosis all stated that I presented with symptoms before the age of 12, but the person who screened me believed that it was even before my T1D diagnosis.

After I was diagnosed with PCOS and endometriosis, my doctor and I talked about the fact that my periods have been miserable since my first period when I was 13.

Why did this all take so long? I know a lot of factors come into play. I know there isn’t one key thing. But I have some resentment I need to channel. I need somewhat of an explanation so I can focus on how to try and fix it. But I also believe that a big part of this was the focus on my T1D.

Everything was about the T1D. It was the focus or the blame.

Was I anxious? Well, yes, because I have diabetes. Did I have major issues with my period? It was probably because I have diabetes. So people stopped there, including me. I didn’t look for further explanation even if I knew it wasn’t diabetes. I had had those conversations too many times. I knew when I just needed to focus on how to deal with it. I’d figure out how to work around it on my own if possible.

I haven’t decided if I wished I had gotten these diagnoses earlier. I do wish that people looked beyond diabetes and the numbers. It is nice to have explanations for things in my past- making things clearer. Maybe some things would have been easier? Who knows!

But now that I know what I have along for the ride, I can work with it. I can do something about it. I can find my community, just like with diabetes.

I now don’t have a period because it’s not good for my health overall- including my mental health and diabetes.

I now take medications for the ADHD and anxiety/OCD.

This all helps with my diabetes management which is still the focus of the world around me (and sometimes myself), but it helps my life overall. It improves my quality of life. It makes things easier. It helps me be happier.

Of course, these things can still suck, and it is okay to admit it! Things can suck (always or at the time), but you can still live your life.

All of these experiences (and more!) pushed me in the direction of a project I started about two years ago. I’ve written a book, and I’m pursuing self-publishing. It’s about coming of age with chronic illness and mental health. I want to balance the positive with the negative of life experiences with honesty. I’ve always wanted to be an author, but to be perfectly honest, I never saw myself writing this type of book. I have though, and I have also decided to utilize crowdfunding to make this dream a reality!

Mindy is self-publishing an honest book about growing up with chronic illness and mental health. She wrote the content before rose-colored glasses impacted her experiences too much. To help this book get published, you can visit the crowdfunding page to learn more, back her project, and help spread the word. You can also follow Mindy on Instagram, Twitter, Facebook, and her blog “There’s More to the Story”.

Instagram Has Been A Lifesaver Since My T1D Diagnosis

I was 28 when I was diagnosed with Type 1 Diabetes. Like most people, I grew up not really understanding the difference. I thought there was one you got as a child, and one you got as an adult. There is no history of diabetes or autoimmune disease in my family, so honestly, I never really gave either much thought.

Then, I happened to have my yearly physical. Since everything else looked good, and I was always healthy, I lagged on getting my blood work completed. A couple of weeks later I got a really, really heavy period (sorry fellas) and went to urgent care. Long story short, they found multiple fibroid tumors (the largest was the size of a bocce ball) and told me to get that blood work taken care of right away. I got it done that day, which was when the rest of the whirlwind started.

Still thinking I was healthy with nothing to worry about, my husband and I left on a week long climbing/kayaking trip. A few days into the trip, I received a call that my fasting glucose was 300. They assured me it was probably a fluke but said that I needed to come in and have my a1c tested when I got home. During our trip I started to notice some other things- that my close had been fitting looser, and I was drinking a lot of water. We are really active so I thought maybe I just needed to adjust my calorie intake, and it was 4th of July weekend in Arizona so the water intake didn’t seem too odd. I should also mention that for probably 90% of this trip we were without cell coverage- something that still gives me the chills to look back on.

When I got home I had my a1c tested. By this point I had lost 25 pounds. Diabetes was still not even on my radar, in fact my team scheduled CT scans to get a closer look at the fibroids- suspecting cancer. Then my a1c came back at 12.3. I was misdiagnosed as Type 2 for about 6 hours (thankfully not by my doctor). My doctor knows how healthy and active I am, and she ordered a rush test for the antibodies that Friday afternoon. She told if my sugars didn’t go down I needed to go to the ER. That night I tested at 634 and to the ER we went.

I was in DKA, and dangerously close to a diabetic coma. I was immediately given insulin, and Monday was setup with my endocrinologist. A few days later the test confirmed Type 1.

The scariest part for me was how little the medical world seemed to understand about my condition.

When I was diagnosed I immediately researched the difference, and realized a lot of the information I was given in the ER only applied to type 2.

I was thankful that my general doctor knew as much as she did, but fast discovered that was not the norm. This diagnosis is scary enough, but it is worse to feel like you are not always in capable hands. As a newbie, I decided pretty much right away that I needed support of other people who actually knew what they were doing. Instagram and the community I have met through there have been such a life saver for me. I am thankful to have such a great endocrinologist, but there are some things you don’t understand unless you live with it everyday.

I owe so much to this community.

From the helpful tips to the endless support and words of encouragement, this community helps make this doable. It seems so much less daunting when you such an awesome support network. This July will be my first Diaversary, and I am so glad I decided to join this 24 hour support group we call Instagram. 🙂

Why I Helped Save Camp Ho Mita Koda

Until Monday, October 25, 1999, I was a “normal” second grader. One afternoon, my mom picked me up from the bus stop and told me I was not going to ballet class. She brought me to an appointment at my pediatrician’s office where I was diagnosed with type 1 diabetes by our family nurse practitioner. I was immediately admitted to Yale New Haven Children’s Hospital where I was poked, prodded and drowning in tears. After that first night, I decided I was a trooper. I decided I was over diabetes being physically painful and I accepted the needles. However, when I returned to elementary school the following week, I didn’t feel “normal”.

Everyone knew why I was in the hospital for a week. I didn’t like being in the spotlight. I especially didn’t like having to raise my hand when I felt low or high to go to the nurse’s office. I was tired of adults asking me if I felt okay.
<blockquote>I wanted everyone to forget I had diabetes. I wanted everything to go back to the way it was before.</blockquote>
However, a few months later, I started using an insulin pump which was a constant reminder that I was not normal. The overwhelmingly large, rectangular device that bulged out of my pocket made me even more self-conscious. One time on the playground at recess, a classmate asked me about my pump… and I ran the other direction. I was not comfortable in my own skin, and I wanted to hide my diabetes.

Then, the third year I lived with diabetes, I told my mom I wanted to go to sleep away camp like all of my friends. She said that our family nurse practitioner told her about an extraordinary camp where I would meet other children with type 1 diabetes. My nurse even worked there for a few summers! I was so excited to go to the camp.

Upon arriving at camp, I was my usual shy self. After meeting my new childhood best friend the first night, everything changed.
<blockquote>Camp was the first place where I felt “normal” since my diabetes diagnosis.</blockquote>
I was able to talk to other girls my age who experienced the same fears, struggles, and emotions. I was not singled out for feeling low, checking my blood sugar or having to count carbohydrates before lunch. I didn’t even feel the need to hide my insulin pump! I made some of my best childhood friends at diabetes camp.

My camp friends helped me through my difficult teenage years. They made me proud, and the real me revealed. The real me is fearless, bold and full of enthusiasm when opening up about living with diabetes. In high school, I was confident about my diabetes and shared my experiences with my friends. I felt supported! I even worked as a counselor at a diabetes day camp where I became aware of my own strength in being a positive diabetes role model. By the end of high-school, I decided I wanted to study nursing and become a diabetes researcher or educator.

<img class=”aligncenter wp-image-11549 size-full” src=”http://lyfebulb.com/wp-content/uploads/2017/05/11800421_2474603019611_1481508784763211646_n.jpg” alt=”” width=”960″ height=”960″ />

In August 2010, I left for nursing school at Case Western Reserve University (CWRU) in Cleveland, OH– 500 miles away from my dear friends and family. My plan was never to be in the Midwest or to end up so far away from everything and everyone I knew. CWRU was certainly the best choice for my aspirations. However, it was difficult, at first, learning how to manage my diabetes on my own. I was so far from home and had little support. I was still open to all of my college friends and my nursing class about growing up with type 1 diabetes. However, I spent four years opening up about my experiences but lacking a diabetes support system.

I graduated with my BSN in 2014 and continued my education by pursuing a Ph.D. in nursing science, also at CWRU. I was confident in the decision to dedicate my life to diabetes nursing and research. To gain RN experience while studying, I took an RN job at Camp Ho Mita Koda in summer 2015. That summer, I listened to and observed the psychosocial issues that campers of all ages faced. That summer was when I was certain that the Ph.D. in nursing with a focus on type 1 diabetes self-management in emerging adults was where my knowledge and work was unquestionably needed. Summer 2015 was also the summer that I met Paul McGuigen, a BSN, RN, CDE, and research nurse at a local pediatric hospital, Rainbow Babies and Children’s Hospital. Paul had been coming to camp since he was diagnosed with diabetes. In fact, living with diabetes also inspired Paul’s career choice. [[We can’t wait to share more about Paul’s story with you on another blog post!]]

Like Paul, I have also been touched by Camp Ho Mita Koda to pursue my career path. I meet so many children at Camp Ho Mita Koda who remind me of how my journey began. I watch these children grow into confident, “normal” feeling young adults with type 1 diabetes, who advocate for and take care of themselves. After years of missing a significant piece of my life, I find myself at home with the diabetes community in Northeast Ohio. Camp Ho Mita Koda has given me the support system that I was missing for so many years.
<blockquote>Diabetes camp has guided my career path and my life journey. Today, I am a diabetes advocate and believer in diabetes camps.</blockquote>
So, thank you so much for the lives you touch, Camp Ho Mita Koda, you truly make a difference.

<hr />

To support Camp Ho Mita Koda and the new nonprofit managing it, Camp Ho Mita Koda Foundation, please visit: <a href=”http://www.chmkfoundation.org/”>http://www.chmkfoundation.org/</a>


To contribute to Camp Ho Mita Koda Foundation’s first fundraiser, please visit: <a href=”https://rafflecreator.com/pages/15457/camp-ho-mita-koda-cash-calendar-raffle”>https://rafflecreator.com/pages/15457/camp-ho-mita-koda-cash-calendar-raffle#</a>


For questions, please contact Camp Ho Mita Koda foundation at <a href=”mailto:info@chmkfoundation.org”>info@chmkfoundation.org</a>

“Good Morning Carolina, Did You Know You Were a Diabetic?”

“Good morning Carolina. I need you to come back for a shot of insulin and IV fluids immediately. Did you know you were diabetic?”

That was the unwanted wake-up call I received the morning of Friday, February 26, 2016. I had been feeling terrible for weeks and just spent the night drinking water and using the bathroom almost every hour. I was confused, nauseous and beyond exhausted. Little did I know I had been experiencing all of the horrible symptoms that could lead to diabetic ketoacidosis (DKA). I lost about 25lbs, my eyes were sunken, I refused to eat, was extremely irritable and I was fighting a horrible infection from an unhealed wound. Napping a few times a day had become my new normal.  The only knowledge I had about diabetes, however, was what I learned about ten years ago in my 8th grade biology class.

Insulin, blood sugar, syringes, etc. were all foreign terms that were about to become a part of me.

“How could this be happening to me?” I thought. Just two months ago I was in the best physical shape I had ever been. I was a CrossFitter 5-6 times a week and I generally ate very healthy –even counted calories and sometimes carbs (ironic, I know). I was also an MBA student, a graduate assistant, a babysitter, and a CPA candidate. Stress had become a part of everyday life, and although I refused to let it take control over me, that wasn’t my choice to make and my body wasn’t taking it anymore. It was slowly but surely flipping a switch on me.

On February 27, 2016 I was admitted into the ER with a blood sugar of 373 mg/dL, shortness of breath, and the chills—I was FREEZING. Within the first few hours of my first hospital stay, I had X-rays taken of both my chest and my shin, IV lines placed in both arms, a bacterial culture was taken of the unhealed wound on my shin, and best of all I was told I was going into DKA –a brand new term which I refused to learn more about at the moment because I didn’t want to freak out and make the situation worse.

I heard the doctors and nurses throwing around terms I had never even heard of and it felt like I was on an episode of Grey’s Anatomy, except I felt like total crap and I wasn’t getting paid to act.  

After spending about 36 hours as an ICU patient and three days in a regular hospital room I was finally released into the real world where I now had control my own blood sugar by giving myself shots of insulin. In the beginning I was in shock. I couldn’t believe that after 22 glorious “normal” years, my life now depended on tiny amounts of this weird smelling clear liquid, which I had to inject with a needle.

The first few weeks I refused to research the topic because I was scared that WebMD would tell me I was dying, and to add to that I had a visiting nurse who further instilled fear by telling me I should no longer get my nails done at the nail salon or that I could no longer wear my favorite pair of heals anymore because I had to take care of my feet. I was emotionally drained and just wanted to go back and live at the hospital so my diabetes could be taken care of for me.

Thankfully those days didn’t last too long. As I began to get the hang of having to give insulin to control my blood sugars, I began to research the topic more and follow other diabetics on social media. I was able to get on an insulin pump and continuous glucose monitor after only a month and lowered my A1C to a healthy level a few months later. Diabetes was extremely scary and discouraging in the beginning but over the past year this full time job has taught me a lifetime of knowledge.

I’ve learned that my perfectionist ways of the past won’t work with diabetes.

It’s a disease that is affected by so many factors which makes it nearly impossible to manage perfectly. You kind of just have to go with the flow, roll with the punches, and keep living as if it hasn’t made a dent in your life.

I was lucky to have found the JDRF Young Leadership Committee, a group of diabetics that are in my age group in New York City. Some of these people have become my “diabesties” and have truly helped me feel like I’m not in this alone. I’ve also started my own Instagram page with the hopes of inspiring and supporting others in the t1d community. In addition, I recently rejoined CrossFit with the goal of becoming even stronger than I was before I was diabetic.

Having diabetes has become my new normal and although I wish I didn’t have it, it’s taught me to take each day as it comes and to look for the silver lining in absolutely everything. I only got one life to live and I will NEVER let diabetes bring me down.  

Follow Carolina on Instagram: @beatinbetes

How I Accepted My Type 1 Diabetes

My name is Rebecca Sellin. I’m 22 years old and I live in a city called Jönköping in Sweden. Right now I’m studying to become a pre-school teacher at Jönköping University. I’ve been living with type 1 diabetes for the past 6 years, but sometimes it feels like even longer, because I can’t even remember how it’s like to live a “normal” life.

But what is a normal life anyway? Everyone is struggling with something, T1D is my struggle.

But I have decided to see the positive sides of it. I love to have an active and healthy lifestyle, but I don’t like to be treated differently because of my T1D, and that’s why I hid my condition for some years, because I didn’t want people to see me as a weak person.

My diabetes was discovered when I was involved in a minor car accident in my neighborhood when I was 16 years old. Thank God I wasn’t badly hurt, but in the hospital a doctor asked me if I had diabetes, since my blood glucose was really high. I told them that I didn’t have diabetes. At that point, I didn’t know anything about diabetes, except I had a lot of prejudices about it. In hindsight, I can see I had all the classic symptoms such as thirst, weight loss and lack of energy. I had to stay in the hospital for almost a week to learn about T1D and how to manage it. I’m still learning new things and it has taken me 6 years to accept my condition. Diabetes is like a puzzle where some pieces are always missing, and you can’t see the whole picture. It’s like a full time job where you get no vacations, not even on your birthday.

I used to always take my insulin shots in the bathroom, or hide my insulin pump. But eventually I learned that I made my disease even harder when trying to hide it from everyone and trying to fit in. I felt so alone, since I didn’t know anyone with diabetes, and I knew I just had to meet other people with diabetes that fully understands what it’s like. My family and friends are super supportive, but they will never fully understand what it’s like to always have diabetes, and constantly be thinking about it. So I decided to start a group on Facebook to organize meetings and be able to meet with other T1Ds in my city. We meet up a couple of times a month and do stuff together like bowling, taking walks and going to cafes. This has been so helpful for me in the process of accepting my disease, and I can only thank my diabetes for meeting all my new friends, or my diabuddies, as I like to call them.

Also, I’m really happy for the diabetes community that I found on Instagram. To be able to meet people who go through the same things on a daily basis as I do gives me energy to keep on fighting every single day. Together we are stronger and can support each other. My goal is to inspire others who live with T1D, and to never let diabetes stop me from doing what I want in my life and chasing my dreams. I’ve grown so much since my diagnosis, and I’m so excited to see what life will bring.

A month ago I got a diabetes tattoo with my diabuddie, Elin. The tattoo says “I am greater than my highs and lows” which is a great reminder everyday when struggling with your blood glucose.

Follow Becca on Instagram @type1becca

How to Form Healthy Habits after a Diabetes Diagnosis

When someone gets a diagnosis of diabetes, the first question often is, “What can I do?” Patients want to know what changes they can make to better manage their diabetes. Often, the answer is that you can make lifestyle changes, like exercising more and improving your diet. These changes, however, can often be easier said than done.

Breaking the Habits of a Lifetime

To make lifestyle changes, you have to change your habits. This can be challenging, because you may have built up some of these habits over a lifetime, but it’s not impossible.

The first step is to understand how habits form. There are three steps. Step one is a cue that tells your brain to do something. The second step is the behavior itself. The third step is the reward you get from performing the behavior.

If you want to form a healthy habit, you’ll need to determine what your cue will be. You know what the behavior is – that’s the healthy habit you’re trying to instill. Then, you’ll need a reward.

Putting Your Plan Into Action

Here’s an example. One of the key habits you want to develop if you’ve recently gotten a diabetes diagnosis is to get more exercise. Let’s decide you’ll walk for half an hour to start. You’ll need a cue to lace up those sneakers and get on the treadmill.

If you are used to watching the local news for half an hour every day at 6:00, set up your treadmill so you can see the TV from it, and take your walk while you’re watching the news. Your cue to start walking is the beginning of the news.

Just as the news begins, get on your treadmill and start walking. Keep going until the news is over. Time spent on a treadmill can get a little boring, so watching the news at the same time can be a nice distraction.

Developing an Appropriate Reward System

Now you need to reward yourself for taking your walk. This part can get a little tricky because, for many people, the idea of a reward is synonymous with food. But you’re also trying to watch what you eat, so you’ll have to come up with another reward. Perhaps you can keep track of the number of days you accomplished your new habit, and when you’ve reached a certain number of days, treat yourself to a shopping trip or a movie.

After a month or two, you will have gotten into the habit of walking for half an hour a day. Next, you can develop healthier eating habits, another change you’ll want to make if you’ve recently been diagnosed with diabetes. Use the same three steps – cue, behavior, reward.

To increase your chances of succeeding at making this new behavior a habit, here are some tips.

Focus on one habit at a time. You may be trying to get more exercise and eat healthier at the same time, but focus on one goal first to make it a habit. Once it’s second nature, move to the other goal.

Be positive. Your new habits will make you a stronger, healthier person, so focus on that. Don’t think of it as depriving yourself of your favorite foods or forcing yourself to exercise.

Forming new habits like daily exercise and healthy eating will help you better manage your diabetes or another chronic disease.

A Personal Story of Struggle and Triumph over Mesothelioma

Mesothelioma is a devastating and aggressive form of cancer. It is most often caused by exposure to asbestos, a harmful natural mineral that was used for decades in a variety of applications. Getting a diagnosis of this type of cancer can feel like your world is ending; the prognosis is rarely good. There are hopeful stories, though, like that of Katherine Keys who was diagnosed with mesothelioma ten years ago and today is thriving and telling her story to give others hope.

Flu-Like Symptoms
Her story began when Katherine was 49 years old. She started to feel some persistent symptoms, like difficulty breathing, shortness of breath, a frequent cough, and chest pains. She thought she must have some type of respiratory infection, like the flu. But the symptoms just wouldn’t go away, and eventually she went to the emergency room where she ultimately got the diagnosis of stage I mesothelioma.

Mesothelioma is a cancer that attacks the mesothelium, the tissue lining the inside of the body and most organs. Katherine was diagnosed with the most common form of the disease, which affects the pleura, the part of the mesothelium that surrounds the lungs in the chest cavity. This is why her symptoms resembled those of an upper respiratory infection.

Katherine was luckier than most people with mesothelioma in that she got her diagnosis in stage I of the disease. Because the symptoms are so similar to more common illnesses, and because the cancer has a long latency period, many people never get an accurate diagnosis of mesothelioma until it is already advanced to a later stage. This makes it much more difficult to treat. Katherine, at stage I, still did not get a good prognosis from her doctors, but her early staging gave her hope that she could fight the cancer and possibly win.

Ready for a Fight
Determined to give the fight her all, Katherine realized she needed an ally and turned to MesotheliomaLaywerCenter.org. Here, victims of asbestos exposure and those who have received a mesothelioma diagnosis can find the support and guidance needed to fight back. The site provides resources to help inform patients about everything related to mesothelioma. It also provides access to medical experts who can provide the best treatment and legal experts who can provide services to help patients fight for compensation through settlements and asbestos trust funds.

With guidance from MesotheliomaLawyerCenter.org and access to medical teams that could provide her with the most advanced treatments, Katherine chose to go with the most aggressive attack against her cancer. She chose to undergo a very radical type of surgery that is risky and only performed by experienced surgeons. Called an extrapleural pneumonectomy, this surgery involves opening the chest cavity and removing one entire lung, all of the pleura surrounding that lung, part of the diaphragm, and even some of the lymph nodes. This extensive surgery is the best chance a mesothelioma patient has of achieving remission and Katherine was prepared to take the risks and hope for the best outcome.

After the surgery, Katherine had to face life with just one lung, but her treatment wasn’t over yet. To reduce the risk of the cancer recurring, she received radiation therapy five times a week for several months. Although she had also been scheduled to receive chemotherapy, the success of surgery and radiation mean she could avoid that treatment.

Recovery and Remission
Recovery from this aggressive line of treatment took Katherine months, and even after a year she still had limitations. In fact, she will always live with some physical limitations because she has only one lung. After her treatment Katherine’s doctors could not find any signs of cancer, but there was still a possibility of recurrence. Every month for several months she had to undergo blood tests, X-rays, PET scans, and other tests to confirm that the cancer had not come back.

Those check-ups were eventually reduced to every two months, three months, six months, and then once a year. The cancer never came back. After one year Katherine was thrilled to be cancer-free. Ten years later, she celebrates life like never before because she is still cancer-free.

Katherine beat mesothelioma, not something that many people can say. She credits her survival to her own hope and optimism, her amazing medical team, the love and support of her family, and the resources she received from MesotheliomaLawyerCenter.org. Now, as a mesothelioma survivor, Katherine relishes having time with her family, but she also loves telling her story and bringing hope to other people who are going through the same struggle.

Accepting Diabetes And Using Social Media For Positivity

My name is Rowena. I am a professional dancer/ choreographer/ instructor based in Liverpool, UK. I was diagnosed with Type 1 Diabetes in 2014, 2 days before my 24

I was diagnosed with Type 1 Diabetes in 2014, 2 days before my 24thbirthday. During the lead up to diagnosis, I had all of the classic symptoms of diabetes such as extreme thirst, serious lack of energy, weight loss, unexplained hunger, and loss of strength. I looked very worn too, but because I was training a lot (around 20 hours per week), I delayed going to the doctor because I just thought I might be overworking myself and not getting enough sleep. However, when it got to the point of me drinking about 7 liters of water a day, I went to the doctor. I told her all of the symptoms I was experiencing and she said I could be diabetic. It was strange hearing that as I had so many preconceived ideas and misconceptions about what diabetes was – including inactivity and poor diet. I wondered how I could be diabetic when I was so fit and healthy. I mean, I was full-time dance training at the time, with a good diet and good general overall health.

Two weeks after taking multiple daily injections, I started insulin pump therapy and have not looked back since. I am still as active as ever and I actually feel like I have much more control of diabetes when I am at my busiest. Oftentimes, I collect data about my own experiences of living an active life with diabetes, and I then translate this information into easy to follow tips, published on my website www.type1active.com. This not only helps me to log my progress with my management and fitness, it is also a great way to help other diabetics learn about exercise and nutrition. The website also contains an online training portal that provides goal specific training programs for diabetics around the world. I find great pleasure in helping others achieve their goals whilst showing them that type 1 diabetes does not need to stand in the way of living an active, full life.

Overall, I think attitude plays an important role in diabetes. We can complain that we have it, or we can accept it and use that energy to find ways to work around it. For instance, from the get-go, I have been, and still am, so grateful for social media; Instagram and Twitter. It has connected me to so many other diabetics who inspire me to stay positive. I learn from them and they learn from me, which is what the management of this disease requires… research, trial, and error.

I hope to connect with you all soon. Keep an eye out for more fitness videos.

Rowena x

Diabetes Doesn’t Control Me

At 49 years old there couldn’t have been a more pronounced time when I needed my mommy most, but at 80 years old she was suffering through her umpteenth battle with cancer and a complicated surgery.  Somehow it didn’t feel right to burden her with my diagnosis.  So there I was, just shy of turning 50, with a life-changing, devastating diagnosis of Type I Diabetes and without my mother to console me. No one can feel your pain or offer support in times of crisis like a mother. As a mother of 2 boys myself who have been afflicted with food allergies, Celiac disease, ADHD and Asperger’s I was no stranger to offering comfort.  I’m just not accustomed to receiving it. I’ve always been strong, emotionally strong I mean.  There was no time for self-pity, for sadness for failure.  Failure meant death.  My friends and family offered support and kindness but no one can really understand the depth of fatigue and fear the disease brings. The persistent need to monitor my blood sugar and account for every scrap of food takes its toll; it’s exhausting.  

Ultimately I made a new best friend, my Dexcom CGM.  I go low in the middle of the night, more often than I should, and definitely more often than I like.  It’s always there for me and I’m thankful for my little pink receiver that wakes me up and shouts EAT SUGAR, figuratively of course.  I’m doing great: still exercising a ton, eating healthy, and living life. My purse is heavier, the TSA screening takes longer and everyone has seen my muffin top when I inject in a restaurant. Despite all that I’m in control.  I’m winning.  Diabetes doesn’t control me.

Becoming a Chronic Patient

26 June, 2009

I had woken up with Michael Jacksons’ “Ben” streaming out the radio. The news of his death had reached South Africa. I wrote my last mid-year examination of Grade 10 and celebrated by watching the newly released “The Hangover”. While we discussed the obsceneness of the film, I received a not-so-average phone call from my mom who had taken my little brother to see a doctor.

“Tracy, your brother has been diagnosed with type one diabetes”

Sure, my brother David had looked exceptionally unwell, stick thin and couch ridden, a far cry from his athletic build and energetic character. But what on earth is type one diabetes (T1D)?

“So what does that mean? Does he need antibiotics?” I replied.

Little did I know the whirlwind that was about to hit my brother and my family. We all grappled with the concept of T1D. What do you feed a type one? Is sugar bad? Insulin injections? What is insulin? Daily monitoring of blood sugars? We were a family unit exceptionally confused and desperate to help David through this diagnosis, but not fully understanding how.

David had gone from carefree 14-year-old to being his own doctor and primary caregiver- administering his medication every day.  He singularly experienced crippling low blood sugars when injecting excess insulin and the exhaustion of high sugars when he did not take enough. He was alone with these feelings as we could only try to understand and help where we could.

The integration of diabetes into an individual’s life and further more into a family’s life is challenging with mental, emotional and physical hurdles. Education regarding T1D came through websites, the endocrinologist, courses, and books, but more potently- through the experience living with a T1. We learned together through trial and error. We now knew and understood the symptoms, lifestyle of consequences of this chronic illness. (That most definitely does not require antibiotics, thank you Tracy of ‘09.)

At least, we all thought we had the subject waxed.

20 October, 2013


I stared at my skeletal body in the mirror, my 20-year-old, incapable and broken body. My body and mind were permanently exhausted and constantly failing me. My bloodshot eyes searched and traced my bones. My head was surging and nausea scratched at my dry throat. Surely not, I thought.

With a knotted stomach and shattered threshold, I asked David to test my blood sugar. The countdown of the tester was excruciating, how could 8 seconds feel like an eternity? The monitor greeted me with a beep and a cheeky “HI”. Simple as that, I was diagnosed with type one diabetes. The tears flooded my eyes and streamed across my face.

My heart felt an incredible amount all at once.

It broke and ached.

It felt immense relief finally knowing why I was sick.

It broke again, for now I needed to break my parents’ hearts.

It sang that my brother and I were now a team.

I went from standing on the outside of T1D, curiously and helplessly peering in at my brother, to stepping in, right by his side with my own T1D diagnosis. I watched David tackle it for four years, expressing my sympathy and support. Now I was fully thrust into a position of empathy – I now knew what he felt.

With 10 years of exposure to T1D from David’s diagnosis to my own, I have felt the obvious lack of knowledge surrounding T1D in society. We don’t know the symptoms and we cannot seem to recognize the lethal combination of exhaustion, excessive thirst and bathroom breaks, unintended weight loss, blurry vision, irritability, and nausea. I was a second-year medical student, with a T1D brother yet it still took me months, to acknowledge my symptoms, to recognize my disease and act accordingly.

The thought that I possibly had T1D did flash across my mind in my last weeks leading up to my diagnosis but I kept dismissing my symptoms:

I am exhausted from being so busy.

I am thirsty and losing weight because I am doing Bikram Yoga.

I am crying, angry and frustrated each day because it has been a tough year.

I am simply burnt out.

The symptoms are problematic as they can be explained by most stressors in modern daily activities, which effectively delay an important diagnosis. Further impairing prompt and vital healthcare falls upon the shoulders of health-care professionals. The T1D diagnosis is often missed. It is a tragic oversight as it can be suspected by simply taking a patient’s history and performing affordable bedside tests. A urine dipstick or a finger prick glucose test can often scream T1D. The delay and failure of diagnosing T1D carries a heavy price, such as the heart-breaking stories of little Kycie Jai Terry (5), Claire Taylor (17) and Nicola Rigby (26), all losing their lives to undiagnosed T1D.

Living with this chronic illness has made me acutely aware of spreading my knowledge and insight into T1D. This inspired me to start my own Instagram account, type1tracy. Diabetes has enriched my approach in my medical studies, as I have become the chronic patient. It has made me mindful, grateful and present. Accepting my diagnosis, I have achieved more than imaginable and am blessed with appropriate medical health care. It has made me strive to be the best doctor I can be.

If you have T1D, you are empowered with knowledge. You never know whose life you may change by injecting your insulin in public, sharing your diagnosis, your symptoms, and your experiences. Above all, you can change lives and your own, by fully embracing type one diabetes – all while being unapologetically you.


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