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Living With My Diabetes Diva

I have been living with my Diabetes Diva for nearly six years now.

Six years filled with drama, sleepless nights, and frustration, but also amazing memories and lots of special encounters with inspiring people from all over the world.

I got diagnosed with a pensionary at the age of 14 on my first day of upper school. It was a pretty stressful time then – my mom, my two siblings and I were moving into a new house because my parents got divorced. Besides drinking a lot, I remember having to go to the toilet constantly, getting sick all the time, being super tired and struggling with painful foot cramps.

Fortunately, my aunt’s sister, who is working as a doctor at the children’s medical unit, instantly told my mom to take me to the hospital to get some blood tests done. If it were not for her, I don’t know what would have happened if she had not sent me to the hospital since my blood sugar was above 1200mg/dl (66.6 mmol/L) at the time of my diagnosis. There I had to stay for nearly 2 months, however, thanks to the amazing support of my medical team at the hospital, I quickly learned how to adapt to my new full-time job as working as my pancreas.

The first few weeks after getting out of the hospital were a bit challenging. Having to think about so many new things like testing your blood sugar, injecting insulin and carb counting while getting back to school, moving into a new place and preparing for upcoming exams. At first, I was a bit scared of what my new classmates & teachers would think about me – would they judge me because of my pensionary pancreas? During the first few weeks I would go to the toilet to inject my insulin because I was worried about what they might say to me. However, I quickly overcame my fear and became comfortable with injecting and testing my blood sugar in front of other people because there is nothing to hide. I started fully embracing type 1 diabetes, holding lectures about T1D in front of my classmates and visiting newly diagnosed kids to give them strength, support and to show them that they are not alone. Living with Type 1 Diabetes can be really tough and nerve-wracking sometimes. Having to take care of your body 24/7, 365 day of the year is a huge responsibility a performance you can be very proud of.

To share my thoughts & experiences, to motivate show other type 1 diabetics that you can live a great life with a pensionary pancreas, I got inspired to start an Instagram account  (https://www.instagram.com/onnepe/) and writing my blog www.onne-pe.com where I write nutrition, vegan food, traveling and my journey with my Diabetes Diva. 

Since then I got to attend medical conferences and blogger meetings in different cities & countries and got to meet so many inspiring & strong people from all over the world. Being part of the amazing diabetes online community is like having in a huge family. I just love how everyone is so supportive and that there is always someone you can talk to when you need something or when just feel the need to vent when it is one of those days where dealing with T1D feels a bit more challenging than on other days.  

Like Oscar Wilde said: “What seems to us as bitter trials are often blessings in disguise” and I strongly agree with that. Living with Type 1 Diabetes is a challenge – but sometimes only the most challenging times only make us stronger.

I’ve grown and changed so much over the past years and diabetes definitely was a huge part of it. Living with a Diabetes is a large part of who I am, but it does not stop me from doing the things that I love or living the life that I choose.

Even though I would sometimes appreciate just taking a day off from all the blood sugar drama, thinking about changing infusion sets, lancets and counting carbs – I can definitely say that the diagnosis has changed my life for the better. I am extremely grateful for having access to insulin and advanced technology within diabetes care & the opportunity to wear an insulin pump as well as a CGM which makes everyday life so much easier. Dealing with diabetes can be very difficult and frustrating sometimes however it made me work harder and healthier. It taught me so much about my body, to love myself and to never give up. I want to inspire other diabetics to live beyond and to show them that living with this disease certainly does not stop you from living your best life. You can eat the food I enjoy, travel the world and explore new & exciting things.  

All the love,

 Anna xx

When Life Is Not Kind To You, Be Kind To Life

Sometimes you feel like life is not kind to you, but if you are kind to life, it makes it a better place.

I was 21 years old in 1999 when I was diagnosed with IBD / Chrons disease. I had my first bowel surgery in January 2000. Since then, my life has been crazy with surgeries.

I have been through 15 big bowel surgeries and one of them went so wrong – they put an epidural in the wrong spot-  that I had nerve damage and a part of my leg became paralysed. I also had a lot of fistulas and surgery for that.

In 2010, I had to have an ostomy bag, and at the same time they found out I had diabetes. They believed it was a type 1.5 also called LADA Latent Autoimmune Diabetes Adulthood. But after a fail blood test, where they were not sure, they decided it was a Type 2.

I struggled a lot with way too high blood sugars because of my IBD, and I could not control it. Then in 2014, a new doctor thought it was strange for a type 2 to have such high blood sugars, so he took another blood sample and it showed up as Type 1.5, so now I had to inject insulin, like a Type 1.

I have 3 autoimmune diseases now. IBD, Type 1.5 and mild psoriasis. It’s often that if you have one, you can get more. BUT! Life is great after all. I am happily married and I have a great and beautiful daughter who is 14 years old now️. I have an electric small scooter that I totally blinged, that’s just me. BLING makes me happy every day and everywhere I go.

When I had to start injecting insulin many times a day, I decided to make “Bling Your Pen,” a small case for your insulin pen. I loved it! And so did a lot of others. Especially children, teens and women! Lyfebulb has made such a big difference for me, loving the “Bling Your Pen” just as much as me, and choosing to help me make it real on the Market Place. I am so HAPPY!

I choose to make it a good day every day, even though I am very sick now, and in the hospital almost 20-30 % of my life for pain treatment.

 I will continue to try and make a positive difference in the world as long as I live. So far, the world is also giving so much back to me.

My motto is: Don’t worry be happy! And “Bling Your Pen!”

The First Canadian T1D to Climb Mt. Everest

Sebastien Sasseville was diagnosed with type 1 diabetes at age 22. He recalls being faced with a choice: cave in and let the disease get the best of him or grab the obstacle by the hand learn to live well with it. Despite reaching the summit of Mt Everest to prove that diabetes should never keep us from living to the fullest, the heart of Sebastien’s philosophy is not about beating diabetes, but rather welcoming it in our lives and embracing it. Sasseville didn’t choose diabetes, but he chose to make te best of his life with it and used it to motivate him to reach new heights (literally.). His difficult and humbling journey toward acceptance has been filled with powerful lessons. There have been so many positive lessons that sometimes diabetes has felt like a vehicle of growth and empowerment, and therefore a gift to Sasseville.
Hear more about his journey in the video below.

Why I Hate Diabetes, But Love Being A Diabetic

Diagnosed just a little over seven years ago, diabetes has become “the norm”. By now, the carb counting, injecting in public, and answering looks and questions from strangers when I stab a needle in my stomach, is all second nature; it doesn’t phase me anymore. But, when I was first diagnosed, at age thirteen, it did. I did not want the world to see me as “disabled”. I thought that if people were aware of my disease, they would see me as weak. Seven years later, I am still the same girl, with the same autoimmune disease, but now, I show the world I am stronger than ever because I am a diabetic.

I was practically born with a tennis racket in my hand. Growing up, there wasn’t a day where I wasn’t in a gym, on a court, or in a field for at least an hour or two.  Sports made sense to me, and I thrived on the heat of competition. When I was taken to the doctor on the morning of January 28, 2010, and soon told I had an autoimmune disease that would potentially hinder my ability to compete at a high level, my earth shattered. My immediate family had no history or real knowledge of T1D, but now I would be surviving on multiple daily injections and religious carbohydrate counting. Cool.

My mother, a tennis coach, urged me to consider “just playing local tennis and volleyball tournaments”, and to not stress if I couldn’t become a Division 1 athlete, my lifelong dream. Her comments and the lack of knowledge my doctor had around competitive athletics and diabetes were my driving force. I realized I would have to train harder and smarter than my competitors, but I didn’t need easy– I needed doable.

Four years later, I ended up graduating high school a year early, at age 17, to accept a tennis scholarship at Seattle University. Since coming to college, in the fall of 2015, I have made diabetes my life. I started the first College Diabetes Network Chapter in the state of Washington, at Seattle University. I started volunteering at my local JDRF chapter, and even babysitting diabetic children. I began experimenting with dietary changes to help negate the highs and lows that can come with poor diet choices. The transition to Division 1 athletics required more of me physically and mentally, and I soon realized optimal diabetes care was more important than ever. By embracing my disease, and advocating as a type 1 diabetic and division 1 athlete, I truly embraced that I was a diabetic, not just someone with diabetes.

I used to hate being associated with the disease and all of the negative impacts it had on my life, but now I rejoice the person diabetes has made me. I realized I cannot change the fact that I am a type 1 diabetic, but I can change how I let diabetes influence my life. I can set a positive example by participating in clinical research, by making healthy dietary decisions, by being active, and by teaching the public about type 1 diabetes and its implications. I can show the world that I am more than diabetes– I am a strong, capable, passionate diabetic.

Yes, diabetes can be grueling, and tiresome, and I would never wish it upon anyone. But, the diabetic community, the friends and connections I’ve made through my broken pancreas, are invaluable. Being a diabetic is the most rewarding, demanding, empowering roller-coaster I’ve ever been on, but I learned how to embrace the ride.

 

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.

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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Painting To Heal My Body From Crohn’s

“Art is a wound turned into light” – Georges Braque

I was 21 when I was diagnosed with Crohn’s disease.  I was at the age where I was just beginning my adult life.  My life journey suddenly took me into a direction I wasn’t prepared for.  I was an outgoing social person who suddenly had everything taken away.  I had no control over my sickness.

For three years I battled with Crohn’s at its worst.  I lost an extreme amount of weight from not being able to eat.  Everything that was put in my mouth gave me agonizing stomach pain which then turned into extreme diarrhea.  I was a prisoner in my own home. Having to go to the bathroom 20 plus times a day became my normal.  But I could cope with the diarrhea, I could cope with the chronic tiredness, I could cope with the pain, I could cope with the joint pain that plagued my body, I could cope with the endless medication and the side effects it gave, but what I couldn’t cope with was the loneliness, the lack of control I felt I had over my life, and most of all, I couldn’t cope with not being the person I wanted to be.

After years of symptoms and trying medication to settle the Crohn’s, I formed an abscess on my large intestine which grew to the size of a football.  I was taken in for emergency surgery.  I was told when I wake up I will have a colostomy bag as there was probably too much damage to my bowel. I didn’t care.  I just wanted everything to be fixed.  I just wanted my life back.  When I woke up I remember the nurse saying ‘you didn’t need a bag’  I felt this was the first positive thing that had happened to me in years.  I slowly recovered from the surgery.  My body was so sick (before having the surgery), and the abscess had been slowly leaking poison into my body, so my recovery was very slow.

For the next few years, I suffered from bowel obstructions due to the scarring in my bowel.  I was placed in the hospital for a week, given IV medication and fluids, had a nasogastric tube inserted. The the pain and symptoms would pass.  My body started to heal.  My symptoms of Crohn’s started to stop.  I stopped all the medication, I stopped worrying about leaving the house in case I had chronic diarrhea,  I had no pain, I had my life back!

For 14 years I lived as if I didn’t have Crohn’s.  I knew the monster was being dormant in my body, but I lived like it wasn’t there. I met the love of my life and started a family.  I became a mother to 5 children and started working full time.  My life was extremely busy and I used that excuse not to look after myself.  My diet consisted of coffee all day and the take out food at night.  I would read and research different diets that people had success with to manage their Crohn’s.  I knew all the right things to do and eat, but my attitude always was ‘I’ll start tomorrow,’ but that tomorrow never came.  I knew I was a ticking time bomb, and if I didn’t change my lifestyle soon I would pay the price.  But I always had an excuse.  I started to destress my life by painting. I had always been creative and a free spirit.  I started to create art and found it was a way to emerge into emerge into a world where I could express who I was and who I wanted to be.

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Art became who I was and I finally found something I was passionate about and made me feel free.  I felt this was my way of doing something right for my body and mind, a way to destress from the hectic life I was living.  I continued to research different diets and lifestyles to heal my body.  But that research continued to only live in my mind and didn’t  make it into my day to day life.  My love of art and creating became my passion.  I felt my mind and soul healing and it had a calming effect on my life.

Then one day late 2015 I ate breakfast, and within 5 minutes I had diarrhea.  That one day turned into a daily occurrence.  Then the pain started. I pretended it wasn’t there.  I thought, if I could ignore it, it will go away.  But my ability to ignore it became harder and harder.  I started to take days off work, and started to have to cancel my plans with my friends and family.  But I still ignored it and didn’t want to face it.  I was too busy to deal with sickness.  I continued with my art as a way to escape what life was about to throw at me.

The day I knew the Crohn’s had awakened was the day I couldn’t wear jeans.  Wearing anything tight around my stomach was agony.  I knew the Crohn’s was back and I knew I needed to do something about it.  I went once again to my GP who told me straight ‘If you don’t deal with this now you will do no good to anyone’  she told me.  I thought of my kids and I thought of my husband.  I needed to face this.  My GP sent me to the ER.  They straight away admitted me to the hospital and started all the tests.  The MRI showed I had 30cms of my bowel affected by active Crohn’s.  I also had small perforations of the bowel.  I could no longer ignore it.  I was in the hospital for a week that time, then discharged for a week and back in for 10 days.  I was put on a high dose of steroids and started many long term medication that had success treating Crohn’s.  But the side effects from these medications are horrendous. I suffer from major tremors, my hair is falling out, major weight gain, insomnia, bad skin, extreme fatigue, low heart rate, painful joint pain in my hips, constant viruses, and my mental health was declining.  I took long unpaid sick leave from work.

Once again I was faced with everything being taken away from me. But this time I was a Mother, a wife and I had responsibilities that I never had when I was first diagnosed with Crohn’s.  The feeling of lack of control is one of the hardest things I find to deal with.  I learned very quickly I can only take it one day at a time, because how I feel today may not be how  I will feel tomorrow.  My home life quickly adapted to me being sick.   My husband and children quickly learned that they couldn’t rely on me anymore.  They all stepped up and helped out in their own ways.  Cuddles on the couch with me quickly became our way of making things better.

I started declining in my mental state.  Working in mental health I already knew how quickly it would be for me to sink into depression.  The feeling of loneliness is such a big part of this disease.  I found only a small handful of family and friends really understood what I was going through and supported me.  It is very easy to become let down and hurt by people when dealing with any chronic illness.  Most people didn’t understand how sick I was, or just assumed I was better.  Soon the invites, phone calls, and text messages stopped.  I started joining online social media support groups.  I was amazed how much this helped.  I gained so much knowledge on my disease and realized that the things I was experiencing, others were dealing with the same thing. Suddenly didn’t feel so alone.

I was able to work on my mental health.  I started trying to understand my emotions and why I was feeling the way I was at the time.  If I was feeling angry I would stop and focus on the real reason why I was feeling this way, most times anger equaled pain. When I was feeling lonely that was mostly because I had been in my bed all day, so I got up and laid on the couch around my family.  So each negative emotion I felt, I tried to connect with a reason and then changed my situation. I also kept reminding myself that the medication I was taking is playing a major part in my thoughts and feelings.

I continued with my art, but my whole way of creating changed.  Somedays I would only complete a background on canvas.  My hands shook so much I was unable to do anything with detail.  Somedays my art turned out dark and gloomy, other days it was bright and shiny.  I realized art was a way to express every feeling I was going through.  My art quickly became my therapy.  It became my healing.  Every piece of my art became an expression of my journey.  Every single detail that is on a canvas tells a story of what and how I was feeling when I painted it. I started creating journals.  I painted, drew and wrote every feeling down.  It was healing to read back and see how far I had come.  I started creating journals for others.  I gave them away to friends and family for presents, it soon became my passion for others to heal through being creative.

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I wish I could end my story saying I have gone back into remission and living life again, but I can’t.  Each day is a battle for me.  One day I will almost feel normal, and the next day I’m completely bedridden from pain and sickness.  I’m taking many prescription medications to settle the Crohn’s.  I struggle taking these as the side effects are sometimes worse than the Crohn’s symptoms.  I’ve also changed my diet, and am putting into practice everything I have learned.  I’m filling my body with probiotics, healing my gut with bone broth and eating clean and healthy foods.  I’m taking small steps to heal myself with diet, but most of all I’m continuing with my art as this is my biggest self-healing I can do.  I have found an amazing online community of people who experience what I do in their day to day lives.  It’s so helpful to have people who truly understand the struggle we all face living with a chronic illness.  Somedays I am able to support others, and then some days they are able to support me.

My future is still uncertain.  I’m still yet to find the right medication that works for me.  I’m still taking knowledge of different diets and lifestyles and making it work for me.  Trying to find the right combination is trial and error, but I do know that everything I am doing will eventually have a positive impact on my body and mind and hopefully put me back into remission one day.

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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.

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

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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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