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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: The Bright Side of Type 1 Diabetes

Hey there! Welcome back to Real Talk with Dave! This week, I wanted to talk about something that some may not always want to think about. First of all, in any situation in life, there is always something to be grateful for. When that concept is applied to Diabetes, for example, it may be hard to think of the positives over the negatives. However, there is so much to be grateful for and so much light amidst the darkness of T1D.

Last week, as I offered a giveaway on my Instagram, @type1livabetic, for my amazing followers, one of the requirements to enter in the giveaway was to comment on my photo one thing that they actually like about Type 1 Diabetes. After receiving many comments on the photo from different people living with Type 1 Diabetes around the world, it made me think about it and ask myself that very question. When I sat down and thought about Diabetes as a whole, there were many things that I was reminded of as to why Diabetes is a horrible thing on its own, but the more I thought about it, I remembered how many blessings have come from T1D in my life.

For starters, I was diagnosed when I was only 11 years old. Obviously, as a kid who was transitioning into becoming a teen, I felt like I had lost a big part of my life. When you’re only 11, it can be hard to think positively and think of things that you are potentially grateful for in your Diabetic journey. The last few years, though, I have really opened my eyes and saw the big picture of T1D. It was clear to me on what Diabetes really is. Diabetes is manageable and livable (that’s something to be grateful for, right?). Don’t get me wrong, there are some really hard days along the way, but despite that, we have the proper medication and treatment solutions to help ease the difficulty of T1D.

One thing that I have really enjoyed and that has brought me so much joy and support the last few years has been the growing amount of support in the Diabetic community. Lots of people had mentioned this when they commented on my photo with their own honest answers. We have all somehow formed a bond with each other, whether it be online or in person, where we all just get each other, all because of this one thing we like to call Diabetes. Who would have thought such a horrible disease could bring millions of people together for the greater good?

We have all somehow formed a bond with each other, whether it be online or in person, where we all just get each other, all because of this one thing we like to call Diabetes.

A few other things I personally enjoy about T1D would definitely be the responsibility it teaches you to have, the independence you’re given, and also the added knowledge you are given as a person. How many of you reading this have taken a test before where there was a question about Diabetes and you automatically knew the answer because, well… you have Diabetes yourself and go through it every single moment of your life (especially during that test!). It’s always good to know more about life and how we as humans work, so by having Diabetes, you are able to know more than you would have ever imagined.

Last but not least, the one thing that I can honestly say is the thing I love the most about living with Diabetes every day, every single moment of every day, and every big and major life event I go through is the gift of empathy. People have asked me what I feel I have gained from living with this disease and my go-to answer is simply… empathy! One of the coolest things in life is being able to understand how someone else may be feeling, maybe not exactly, but by having an idea of what they are going through, and being able to connect with them one-on-one, regardless of their situation. In my 9 years of living along side T1D, I have come across several people who go through different challenges, whether it be a health issue or just a stressful life problem, and being able to feel for them, as well as with them, and by knowing how hard it can be to go through something so bad is so good for the soul in which you can take time to stop and listen to each other, offering help and support, which in the end, that’s what we should do for one another, right?

In my 9 years of living alongside T1D, I have come across several people who go through different challenges, whether it be a health issue or just a stressful life problem, and being able to feel for them, as well as with them, and by knowing how hard it can be to go through something so bad is so good for the soul in which you can take time to stop and listen to each other, offering help and support, which in the end, that’s what we should do for one another, right?

Regardless of the fact that Type 1 Diabetes is difficult and has its ups and downs, there is always something to be grateful for. We each may have different views and answers, but whatever pleases you and makes you appreciate the life you live, Diabetic or not, that in itself is something to be thankful for. And the bottom line is that we’re all still alive, isn’t that worth being thankful for?!

So, if you haven’t already, ask yourself: What do you like about Type 1 Diabetes?

Live well,

Dave

The Highs and Lows of Diabetes

Diabetes is not easy. This is not news to anyone who suffers from this disease, or is close to someone who has Type-1 Diabetes. This life is full of highs and lows.

After being diagnosed at the age of 4, I knew my life would forever change. I vividly remember shortly after I was diagnosed, my babysitter at the time giving me a shot in my stomach. I remember tears streaming down my face as I crutched onto the sides of the chair experiencing a pain that unfortunately would become my new normal.

As a diabetic, we all have those memories that can’t seem to escape our daily reality, both highs and lows.

The day we were diagnosed, a bad hypo that resulted in using a glucagon, or an extreme high blood sugar that led to DKA. How about the moment when you had to leave a friends house because your pump site failed and you didn’t bring extras, sitting and asking the question, “why me?”

When I had initially started my diabetes Instagram, I was at a low point in my diabetes. I was going through another bout of burnout, and I felt like this disease was taking over my life. I needed to make a change; I needed to get out of this low.

I began documenting my every day with this disease. I’ll be the first to admit that I do not have a spectacular A1c. I fall victim to blood sugars in the 300’s because I forgot to bolus for that cookie I had at lunch. I eat just about everything in my sight when my blood sugar hits 50. I’m not perfect, and neither is this disease. It is important to be transparent and realistic about this disease. We must remember that even though it feels like we experience these highs and lows alone, we are not alone. It is so important to have a good support system to help us through our lows, and cheer us on during our high moments (unless our blood sugar is 300, then please give us some water).

Despite dealing with many lows, I’ve also experienced many highs. My family grew closer and became very involved with my diabetes. I gained many friends both diabetic and non-diabetic. I was able to attend Camp Needlepoint, work with recently diagnosed children and their families, and use my own experiences to advocate and educate. Through diabetes, I’ve become a more compassionate, and empathetic person. My true passion is to help people, and I have diabetes to thank for that. It’s given me the tools to help others; a helping hand, listening ears, open arms for those who feel hopeless or lost. My mission is to continue to help others and also use this disease to inspire change. One of my biggest mottos is “everything happens for a reason.”

Although I’ve had many low moments, diabetes has given me the opportunity to experience many positives.

I’m thankful for those who continue to support me, and for the numerous opportunities that I’m able to take advantage of.

Diabetes is not easy. There are many highs and lows that we face as diabetics. However, even in your lowest lows, know that there are also sweeter moments ahead.

 

With Diabetes, You Can Do Anything!

Diabetes has been a part of my life for 22 years. On February 9th, I celebrated my Diaversary. I always knew diabetes wasn’t my purpose, my purpose is to live my life the fullest and that’s what I communicate to all people with diabetes –

“you’re the purpose, not diabetes, so do everything you can to not let diabetes stand in the way of your dreams”.

I have had type one diabetes since the age of 4 (1995). Many people think that I’m used to it because I was diagnosed as I child and I don’t remember life as a healthy person. But as every person with a chronic disease, I dream of a life without it. Unfortunately, I remember some images from the hospital and feelings of pain, fear, and sadness. Till this day I’m afraid of taking venous blood samples for tests in clinics, because of how traumatic it was to me when I was diagnosed.

In the begging I was treated with insulin injections, then I was on insulin pens and in 2003 I got my first insulin pump. Since that time I became a “full-time pumper” with no breaks. For most of the time, diabetes was just a normal part of my everyday life, nothing special. I only experienced some teasing and discrimination in elementary school, but time heals wounds, especially when you meet some nice people after a tough time in your life.

Now I am a Diabetes Youth Advocate, a Diabetes Educator, and a Diabetes Blogger. Raising diabetes awareness is an important issue to me…but how did it happen?

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It all started with my diabetes burnout in 2013 – when my disease “turned 18.” I felt kind of depressed that it’s “an adult” now, and so many years have already passed. I was exhausted and unhappy at that time. One day I thought that maybe I could overcome it with running a blog. I was writing a lot of poems, stories, and songs, so that’s why this idea came to me in a natural way. With the support of my family and boyfriend, the blog was finally created.

I’ve decided that the symbol of my blog will be a blue sugar cube because I think sugar cubes are so cute and of course blue is our color. 🙂 At first, it was only my personal thing, but to my surprise, people started to read my posts! It turned out that I’m not only helping myself but also other people with diabetes, and parents of children with diabetes.

Then many things in my life changed for the better! I received both Bachelors Degree and Masters Degree with honors (in Exhibition Design Study) and my Masters’ diploma was presented on Coming OuT Best Diplomas of Academy of Fine Arts 2014. I also managed to finish my second field of study on the Academy – Pedagogical Study, which allowed me to gain experience in teaching arts and crafts to children, adults, and people with disabilities.

I wanted to use my artistic skills to change diabetes somehow. That’s why in 2014 I have created two adorable monsters – Hypo (blue) and Hyper (red), which represent hypoglycemia and hyperglycemia. I wanted to encourage people with diabetes to talk about symptoms and emotions related to those states and to explain to healthy people how it works. Hypo and Hyper were heroes of the calendar which were designed for diabetes clinics in Poland in 2014.

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I’ve started to be involved in many different social campaigns and actions (Menu for diabetic, How to Live with Diabetes, Human Library and more), write articles and feuilletons for diabetes magazines or portals and even lead free lectures and educational meetings for people with different types of diabetes in Polish Diabetes Association. I became certificated Diabetes Educator by participating in course organized by one of the polish diabetes foundations. Recently I founded the diabetes group Blue Sugar Cubes on Facebook to give people with diabetes and their families more support.

Last year was truly a turning point in my life. I was a participant in International Diabetes Federation Europe Youth Leadership Camp 2016 and now I act as IDFE Diabetes Youth Advocate. For World Diabetes Day 2016, together with two friends from camp, we led our first diabetes campaign eUrMOVE in collaboration with IDFE. I designed logo and graphics with Hypo and Hyper. The campaign was a huge success and we look forward to doing more for diabetes cause this year.

Now I only hope that my fiance’s patience will stay on its’ high level forever, because I’m one crazy diabetic girl 😉 With diabetes you can do anything!

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My Diagnosis With Type 1 Diabetes

Everyones’ diagnosis with Type 1 Diabetes is different. This is why I started my blog – to share my story and this post was the very beginning.

This is my story…

Every person diagnosed with Type 1 Diabetes may have similar symptoms but not everybody’s diagnosis is the same. This story is from my account but parts within my memory are hazy. I don’t know whether It is because I was so ill or that It was a sensitive time so I’ve blocked it out.

It all started when I was in year 7 around the summer term. Everyone who took part in the stage production of Oliver at my high school was taken down to London to see Hairspray the musical as a reward. All I can remember was being incredibly thirsty. Within a few hours of my journey, I had drunk nearly all 3 bottles of my water. So as you can imagine after drinking all that water I started to need the toilet. Realizing myself that I’d drunk a lot on the way there, but just putting it down to the fact that it was a novelty to be allowed flavored water, on the way back I tried not to drink any. However, after falling asleep, I woke up to find my mouth incredibly dry, resulting in me drinking another bottle. It’s just the hot weather making you drink a lot I thought to myself.

Later in the term, I was becoming incredibly tired. By the end of the term, I was exhausted. I was still drinking lots and during the end of year exams, I started to annoy one or two of my teachers constantly asking to fill up my bottle and asking to go to the toilet. Standing outside my form room, I remember this like yesterday, I fiddled with my skirt and it very nearly fell to the floor. That night we had to buy a new skirt from the school shop before speech day at the end of the week. My mum and dad put it down to a growth spurt and I thought nothing of it.

The summer holidays rolled around. At the beginning of the holidays my cousins, sister and myself went to Filey for a week with my grandparents, something we did nearly ever year since being little. I continued drinking lots and going to the toilet a lot. My gran always tells me how she remembers I was drinking so much Robinsons fruit squash – looking back I agree. Constantly needing the toilet when you are at the beach leads to many difficulties – mainly the lack of toilet! Dragging my gran to the sailing club many times a day she knew something was wrong.

‘Promise me you will go to the Doctors when you get back from Spain’ – Gran the Pan (as we call my Gran haha)

 I dismissed it – I didn’t think anything was wrong.

Our holiday in Filey ended and we headed straight for our friend’s villa in Spain. This time with my parents, sister, cousins, auntie and uncle. This is where I became ill quickly. I was eating constantly  (I developed a love for ham toasties) and losing dramatic weight. Every night I would get up around 5 times and every morning I’d have drunk around 4 litres of water (It’s hard to hide how much you have drunk when the water is in a bottle abroad!) Every morning when I’d wake up I was as tired as I had been that night when I had gone to bed. But everybody is sleepy and lazy on holiday – that’s what I thought my tiredness was down too! My dad and uncle tried to throw me in the pool, ‘don’t snap her she’s like a twig!’ my dad joked (unknowingly of course!)

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When we arrived home my mum took me to the doctors, I tried to persuade her not to go but it was no use. This is a TMI warning – so they wanted me to wee in a bottle and as a 12-year-old girl, I refused. We took the bottle home and was told to bring it back the next morning. Finally, after sleeping on the idea I reluctantly did. The doctors then ran some tests and told my mum the results should be there later that day and they would ring us. But an hour later there was a phone call…

It was Doctor Brophy my godparent and GP. He told my mum and dad that I urgently needed to go to the hospital because I had extremely high blood sugar and ketone readings. We rushed all the way to the hospital and I had some more tests. They weighed me and took some blood samples. My mum and dad were both really nervous but I didn’t really understand. They told me that I was Type 1 Diabetic and that my bloods were 38! They explained to me that a non-diabetics blood sugar is between 4 and 7. I weighed around 4.3 stone and my condition at the time was severe. They told us that I was very lucky and that if we had not gone to the doctors on that day I would have been in a coma (shortly followed by death from DKA (diabetic ketoacidosis))

5th August 2009 – The date I was diagnosed.

It was really hard being diagnosed with a ‘disease’ (ergh I hate that term!) that you have never heard of and there is no cure for. It hit my parents especially hard. I remember being sat in a room and my dad having to leave – I know it was because he was trying to process it and didn’t want me to see him upset. My mum with soft Northern Irish heart just cried. (I’ve just cried writing this). I refused to stay in hospital that night. I just wanted to go home. I was told I was allowed if I did my own injection at home and came straight back the next morning. ‘ (From what I recall – my dad may have a different version) What would you like?’ My dad asked when we were sat in the hospital. Instant laughter from the nurses and my dad when they found out it was going to cost my parents an iPhone 3. Every cloud and all that ? haha!

The rest of the summer is just a blur to me – I remember going to Clumber Park in our caravan, we always go to Clumber when a big event happens in our life. But apart from that, all I remember from the rest of the summer is my parents helping me (mostly them) carb counting my dinner, scales, carb ratios and insulin injections.I did my own injections from the start – I refused to let anyone else inject me.

September rolled around and with all my new diabetic supplies I headed off to my first day of year 8. I was lucky enough for my mum to work at school so she let all the staff know that I had Type 1 – however, I was petrified of telling my friends. Our first lesson was Biology and I think all the stress got to me because I felt really strange. From what I remember I’d only had this feeling once before. I checked my blood sugars and they were low. I remember being really embarrassed having to tell my teacher I was low but she was lovely. Some of the symptoms of low blood sugars are lack of concentration, dizziness, and shakiness. I had two plain digestive biscuits to bring me back up as my eyes were welled up with tears. My friends on my table asked what was wrong. Newly diagnosed I didn’t know how everyone would react. Only knowing about Type 2 before I was diagnosed and how it was portrayed in the media I thought they’d think it was because of my weight (which to be honest) you must have been able to tell it wasn’t!

 I wrote it on my wrist – ‘I have Type 1 Diabetes’ – That took so much of my courage.

Being Diagnosed with Type 1 wasn’t the be all and end all. It was the beginning and the start of a long journey but not a bad one – it’s a roller coaster. It was a learning process, it still is and it always will be. I hope by sharing my story it will be relatable to other Type 1’s – the unknown, the confusion and the symptoms. If you didn’t know what it was like to be diagnosed with Type 1 I hope it’s given you more of an understanding (and well done for reading to the end!)

Lots of love The Backpacker and the Pod xxx

If You Are Living With Diabetes, You Are Not Alone

My name is Bia and I have been a type 1 diabetic for 16 years. I was diagnosed when I was six-years-old. I don’t remember much, but I remember my parents crying and I remember my doctor saying: if you learn how to control it, you can live a normal life.

My parents understood that and they taught me to be a strong and responsible person. I knew that I had a chronic disease and I couldn’t play with it. My life depended on my decisions. I had some bad days when I didn’t want to check my blood sugar or count carbs correctly, but it was only days. I don’t have these days anymore. I haven’t for years 🙂

I’ve worn an insulin pump for 10 years and it’s my best friend! I call it “bombinha,” and I love it as I love my family. It helps me control my blood glucose, and has given me wonderful freedom!

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I have the support of my parents, friends, and boyfriend in every decision that I make. They are everything to me. I believe that everything in life must be conquered. Good things happen to the good people. If you are kind to others, life will be kind to you. We need to put our heart into the things we do, and not only think about the life prizes.

In 2015 I decided to write about my diabetes to my Facebook and Instagram friends. I’ve never hidden it, but I began to explain everything to everyone online. People used to stop me on the street to ask about my insulin pump and I always loved to explain how it works! Writing a blog about diabetes it’s one of the best things I’ve ever done! I LOVE to answer questions and share some good information for the diabetic public.

In Brazil, we have a poor public health system when it comes to diabetes and knowledge. I believe that with my blog I help more than some of the doctors here.

Controlling diabetes it’s not an easy task, but with patience, self-love, and knowledge, it can be possible!

My plans for the future is to continue my work with Biabética and help more diabetics every day. I want to be known so I can reach more and more people with good information about diabetes! Let’s be more positive, and let’s help those who need support and love to treat their own chronic disease!

My message to everyone is: you are not alone. The internet is the best way to find others like you. Don’t hide your condition, don’t be ashamed of it! You are beautiful and great with it. ❤

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Using Diabetes To Inspire Others

Diabetes has been a constant in my life for the past 9 years. It’s been a rough and bumpy few years, and I can honestly say that this disease has really shaped me to be the person that I am today.

This disease is real. It has no breaks, vacations, or a pause button. Since the day I was diagnosed, I remember sitting in my hospital bed and my mom telling me how I will use this disease to help others, but at the time I didn’t think I could do that task. I struggled as a young teen dealing with Diabetes and wanting to feel “normal”. Growing up, I always felt like I had this thing that I could never get rid of. I wanted so badly to go out with friends and feel safe knowing that I won’t have a low blood sugar or have to lug my meter case around everywhere I went, and have to explain to them what I had in it. I remember feeling like I wanted to just give up. I ended up slacking a lot on my health. I didn’t check my blood sugar as frequently as I should have. I didn’t count carbs the way I used to. I seemed to have lost all means of being a Type 1 Diabetic. As a normal Diabetic does, I went to the Endocrinologist and received my life-changing news.

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I had just gotten my Hemoglobin A1C blood test and the Diabetes educator sat me down to tell me that my blood sugar average had been very high for a long time and if I didn’t gain control of my numbers, I could loose my vision, have arm and leg amputations, or have heart problems. Since that day, something clicked in me and I decided I needed to make a difference in my life and in the lives of those that I came in contact with on a day to day basis. I began making better choices in what I ate, exercised more frequently, and took initiative in dealing with this chronic disease. Shortly after, I went for a visit to the Endo and I began to improve more and more each time. That motivated me to use my positivity and excitement for improvement to create something that I could share with others going through the same thing or something similar as me. That’s when I got the idea to create @type1livabetic on Instagram.

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I chose to create something that I can use my love and passion for photography as well as my love for sharing positivity in Type 1 Diabetes. Since then, I feel as though I have really grown as a Type 1 Diabetic and became a part of this wonderful growing community. I am so blessed and privileged to do what I get to do every day. My goal is to inspire others with my disease so that they know that they can do whatever it is they put their mind to.

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This is why I am here, to be a voice in the Diabetic community in hope of one day being freed from this life altering disease! One day at a time! 


If you would like to share your story with Lyfebulb and our readers, please e-mail contact@lyfebulb.com.

Life With Crohn’s Is A Struggle, But I Am DETERMINED.

Normal. This is what everyone seems to strive for. However, this is definitely not me. I live my everyday life experiencing things a normal person doesn’t, and hopefully never will.

For an eighteen-year-old, I have endured a lot of pain. How? When I was sixteen, I started experiencing weight loss, abdominal pains, loss of menstrual cycles, fatigue, the list goes on. I thought it was just from being so busy with school and basketball, so I shook it off. Then, at the basketball state championships, my body started to act much worse. Eating food was irritating me, drinking water was irritating me, any activity was hard; I just wasn’t myself. So, I decided it was time to do something about it.

In all honesty, I never thought this would end up changing my life, but that is exactly what happened. I went to my pediatrician and they gave me a pregnancy test. I knew that wasn’t what I was experiencing, so I knew the test would be negative.  They sent me to a gastro doctor. He ordered me to take some tests and gave me a colonoscopy and endoscopy. Immediately, he diagnosed me with Crohn’s disease. Being a sixteen-year-old, I immediately thought …”What? My chromosomes are off?!” Then, he explained what Crohn’s Disease was.

Being a sixteen-year-old, I immediately thought …”What? My chromosomes are off?!” Then, he explained what Crohn’s Disease was.

Crohn’s Disease is a chronic disease and a form of Irritable Bowel Disease. Basically, my immune system attacked my intestines, causing ulcers and things of that nature. So, all throughout my intestines are painful sores. Certain foods – in all reality most foods – activities, rest, and life in general, irritate them. This causes extreme abdominal pain, diarrhea, constipation, fatigue, being sore, mood swings, and causes life to be very difficult. Also, the intestines don’t absorb nutrients like it is supposed to, causing malnutrition, weight loss, and loss of menstrual cycles.

My gastro started me off on Asocol and Prednisone. When I took those, I got way worse. I started dropping weight left and right. People thought that I had an eating disorder. I heard that so much I began to believe them. This all caused me so much pain. I even noticed people distancing away from me because they got depressed just looking at me. I started to get weak, sports became harder for me. However, I somehow managed to train harder and make the All-Star basketball team, captain of the basketball team, and the MVP award. I am a person that won’t let anything stop me. I have tons of determination and love to prove others wrong.

Despite all this, my life was a wreck. I could barely eat or drink anything. I couldn’t keep food in because of how much pain it gave me. All I wanted to do was exercise because it helped me feel better.  But I began to notice that I grew tired faster, and surfing became way harder for me. This realization depressed me. Surfing is something I really enjoy.

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Myself, my family, friends, and even my doctors were all watching me slowly wither away. I lost around 30 pounds very fast and was way underweight. My gastro ordered me to take more tests, gave me another colonoscopy and endoscopy, but couldn’t seem to figure out how to help. Desperately, my gastro tried a new medicine on me called Imuran. This has not helped either. The summer after I graduated high school, I felt God telling me to go see a holistic doctor. I remember thinking, “Lord, You know we don’t have money for this! If this is your will, however, I trust You to supply the way like You graciously promised in Your Word.” We took a step of faith and acted on His request. I have to say, I DO NOT regret it!

Yes, this is expensive, but I am able to eat, drink, and to live! No, my body is not like it used to be, and I still experience these symptoms, but I am way better than I was in just a few months! I have gained around twenty pounds, started lifting instead of cardio, and am eating more. I changed my mindset and am starting to enjoy life more again. I started a blog on Instagram called @thenuttycrohnie, drum for my church worship band, (of course) ball at the courts, attend college, surf, and work.

I have to admit that all of this is still very hard for me. I still don’t have my menstrual cycle. (Not that I’m complaining about that! I hate periods as it is!) But, I know it is something I should have. Unfortunately, I can only work one day a week due to my health, and even that is hard. But I am so happy to see these improvements! A little goes a long way! I know one day I will be a bodybuilder, I will be able to work, I will have more energy! It’s all in time and effort! Yes, life is a struggle, but as always, I am DETERMINED to prove others wrong.

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Much love! Would appreciate you follow my journey and recipes on my Instagram blog @thenuttycrohnie. Thinking about starting a blog page on a different site as well! Should I? All credit to my Savior Jesus Christ! Thanks for reading!! Blessings!

Mood Boosters

Weekends are for spending time with family and friends, running errands, and relaxing, but as most people know, there is never enough time between Friday night and Monday morning. Those pesky Monday mornings always come too quickly.

Here are four little things that help me get through the week.

  • That first sip of coffee:

Nothing pulls me out of my warm bed more than the thought of drinking coffee. It’s an addiction I’m only slightly ashamed of. I look forward to drinking my first sip of warm coffee, freshly brewed with just a dash of almond milk. (Honestly, I look forward to drinking coffee all the time — in the morning, during the afternoon lull. The best time for coffee is when you get to grab a cup with a good friend.)

  • Hearing your favorite song on the radio:

I have no shame about admitting I cannot sing. Even still, when my favorite song comes on the radio I can’t help but sing along. It’s a good thing there’s usually no one else in the car to hear it. If you’re feeling blue, turn your favorite song on and don’t be afraid to sing and dance along, it definitely can bring a smile to not only your face, but anyone who happens to see your sweet moves. Might I suggest ‘You Make My Dreams’ by Hall & Oates.

  • A quick workout:

Even if I can’t get in a full workout during the day, I always try to do a little something. Whether that’s a yoga session, a walk around the neighborhood, or dancing around to a few songs, the littlest amount of exercise can improve one’s mood. As Elle Wood’s once said, “Exercise gives you endorphins. Endorphins make you happy. Happy people just don’t shoot their husbands, they just don’t.” All Legal Blonde quotes aside, get out there and go. I promise it’ll significantly improve your wellbeing.

  • Casual Fridays:

I sincerely apologize if your office doesn’t have a casual Fridays policy, because being able to dress a touch more comfortably does wonders for brightening the mood. As superficial as it may sound, I think that sometimes how you look helps you to feel like you can take on the world. Whether that’s wearing your favorite pair of shoes, your workout clothes, or throwing on a touch of red lipstick before you head out the door.

All About That Positivity

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We all sometimes find ourselves feeling a little down. Homesickness, stress, and many other reasons can lead one to feel a little saddened or perhaps lacking in enthusiasm. It is during these times that I find having a certain hobby or activity, can really help turn things around. For some that activity is drawing, reading, cooking, etc. There are a variety of hobbies out there that you can try and I believe it is important to find that one thing that will always put a smile on your face. So here are my five suggestions for simple things that can perhaps help you out next time you find yourself a little down.

1. Watch a movie or t.v. show from your childhood.

There is something comforting about watching one of those classic films or shows that you grew up on, whether it is a classic Disney movie or saturday morning cartoons.

2. Do something artistic.

Art has a certain element to it that allows it to serve as the perfect method of expression, and sometimes what we really need most is a way to express our feelings. Whether you participate in one of those paint night sessions or do some arts & crafts at home, doing something that requires you to engage and think will help get your mind off other things.

3. Take a walk.

I once learned that something as minor as a small change of scenery could help one feel a little more positive. Next time the stress is getting you down, grab your comfy shoes and go stroll around to explore parts of your neighborhood that you rarely find yourself in.

4. Participate in a workout class.

We are often told that exercise helps boost endorphins and thus makes us happier, but I think that you can actually take this a step further. One of the best ways to enjoy exercise is through a class such as Zumba or yoga. When everyone in the room is working towards the same goal it can make for fun times, be more motivational, and you can also make news friends in your workout class!

5. Try something out of the ordinary.

There are may be certain hobbies that you particularly enjoy, but there’s probably many more out there that you haven’t tried. Try something new next time, whether it’s archery, paddle boarding, pottery class, etc. There are so many things for you to choose from and you may even discover a new affinity or talent!

Anxiety & Health

It is common knowledge that anxiety and stress can have detrimental effects on your health.  Countless articles have been published on the subject, and WebMD has a page dedicated to the subject.  (See http://www.webmd.com/depression/stress-anxiety-depression.)  As described in the WebMD page, “[s]tress is linked to six of the leading causes of death: heart disease, cancer, lung ailments, accidents, cirrhosis of the liver, and even suicide.”

I have experienced some of the side effects of stress first hand.  When anxious, it is more difficult to sleep, one tends to make unhealthy choices when it comes to food, and as such the body becomes more susceptible to infection and disease.  While under abnormal stress, I am much more likely to develop colds or worse.

This week, however, I wanted to take a moment to focus not on my struggle with controlling and handling stress in the most healthful and productive way possible, but to highlight how excellent stress management can cause miraculous results when a person is faced with serious health problems.

My dear friend, let me refer to him as John, was diagnosed with an unusual disorder a few years ago, severe aplastic anemia.  (See http://bethematch.org/for-patients-and-families/learning-about-your-disease/severe-aplastic-anemia/.)  As a result, he was referred to Johns Hopkins in Baltimore for treatment.  After rounds of chemotherapy and countless transfusions, John was able to return to a normal life.  This sense of normality lasted only a few years, however, and earlier this year it was determined that John required a bone marrow transplant.

When I heard the news I burst into tears because I thought that he has fought hard and long enough.  But when I reached out to John to see how he was doing, I could not have heard a more positive attitude on the other end of the line.  John’s father donated bone marrow to him, and the results have been quite positive.  John is producing his own blood cells now and continues to smile.

A positive attitude is but one factor in John’s continuous recovery, of course.  Happy and relaxed people undoubtedly become sick.  However, a positive attitude and a fight to overcome whatever unfair obstacle your body places in your path to health can only benefit those suffering from chronic disease, as well as anyone fighting the common cold.

I see a clear resemblance in the attitude of my friend John, as well as that of my sister, Lyfebulb’s founder, Karin Hehenberger.  I have often wondered how Karin does it; how she continues to smile, to compete, to grow.  But I suppose that when you do not actually have a choice because the alternative could be deadly, the choice is clear.  Both Karin and John inspire me to not let work stress, arguments with friends and family, or superficial issues like dress size, bring me down.  I thank them both for the everyday motivation to smile, laugh, and move forward.  

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