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Lyfestories: Rebekah’s Journey with Ulcerative Colitis (IBD)

I was diagnosed in 2009 with Ulcerative Colitis, I literally had no idea what this disease was, or how it would have such a huge impact on my life. After about a year and a half of trying every medication to try and control the flare up I was having, an extremely kind doctor suggested for me to have this life changing operation, to remove my bowel and replace it with an Ileostomy. He promised me I’d wake up symptom free and he was not wrong.

To this day, he is my hero, this amazing person who didn’t even know who I was, saved my life and gave me my life back and to this day I can’t thank him enough for that. I went from being in and out of hospital every other week, going to the toilet 20+ times, not being able to hold a job down to being this whole new independent person that could leave the house without worrying I was going to have an accident! I even got myself a job and I saved for a house.  I was also told I’d never be able to have kids and in 2015 I had the most precious little boy.

I created my Instagram account to raise awareness for others just like myself who have possibly been newly diagnosed, going through a flare up or have had a life changing operation and to show them that they are not alone in this battle. I’ve also been battling a condition called pyoderma gangreosum which is an incredibly rare skin condition to have next to the Stoma site and is usually associated with crohn’s patients. Again, I didn’t even know that this existed until I was diagnosed. My goal is to raise awareness–to let people into “thebaglifeofbeck” and for them to know the good and the bad times, and it’s OK to not be OK. It just helps us separate the good days from the bad, and since I’ve had my bag, the good days outweigh the bad. We’ve got this.

Lyfestories: Learning to Love Yourself, Despite IBD

 

 

 

I started experiencing my first symptoms about a year out of school. I’ve always been a perfectionist and an over-achiever, and I suffer from an extreme fear of missing out, so I was really frustrated when I started experiencing what I thought was just persistent and unrelenting gastro. I was in my second year of University and had just started dating my first serious boyfriend. I was insecure and shy and didn’t want to draw attention to the fact I had bathroom issues, let alone used the bathroom for anything other than a wee in the first place (because I’m a girl and god-forbid we poo) so I didn’t tell anyone what I was experiencing and covered my dramatic weight loss with a lie that I was shredding for summer.

It wasn’t until I went on an annual family skiing trip to New Zealand that my parents witnessed the extent of my diarrhoea and my mum urged me to see the doctor. Assuming it was just a tummy bug my doctor prescribed me an antibiotic. Well, 3 courses of antibiotics later and the diarrhoea was still just as bad, if not worse than when I first started them. I was too self-conscious to go back to say they hadn’t worked for a 4th time so I ignored my symptoms for a further few months. It was only when I started seeing masses of blood in every bowel motion that I went back to tell my doctor.

……And just like that, I went from a carefree 19 year old with the world at her feet to a walking pharmacy forever fighting her own body.

I woke up from my very first colonoscopy and was diagnosed with Ulcerative Colitis in April 2012. I remember feeling completely overwhelmed, isolated and helpless. I’d never even heard of Ulcerative Colitis before and here I was being told how I’d never live a normal life again.

Massive doses of prednisone and chemo drugs managed to mask my symptoms for a good few years and I was able to return to some sort of normality until November 2014 when my health rapidly declined again and I began a 2 year long colitis flare.

You can run away from a bad situation but you can’t run away from a bad body, you have to stay and fight it. So that’s what I did. I stopped studying and dedicated 2 years of my life to healing myself. I tried everything from steroids and biologics to faecal transplantation, medical marijuana and cabbage juice, but every day I woke up I was sicker than the day before.

I’d love to stay I remained optimistic despite everything, but the truth is I didn’t at all. I had bad days. Really bad days. Days when I’d just sit on the bathroom floor with blood and stool running down my legs because I hadn’t made it to the toilet in time and cry hysterically at the life I’d be dealt. What I learned was that if you just change your mindset everything bad doesn’t seem so terrible. I found comfort in thinking that either way these diseases are rationed out by the Universe and someone out there was bound to get it, so in a sense I’m saving someone else from having it – almost like I’m doing a stranger a favor.

In September 2016 I had my first near death hospital admission where I was so malnourished that my body had started eating away at it’s own muscle and tissues for energy. I had my next stroke of death two months later when unbeknown to me my body had stopped producing it’s own hemoglobin and I was rushed to hospital for blood transfusions. At this stage I had exhausted all my options in both Western and alternative treatments and surgery became my only option. However, I’m incredibly stubborn and was completely opposed to having an ostomy bag. I remember saying I’d rather die than have surgery. But in December of 2016 I was actually faced with that decision….obviously I chose the latter. One year later I underwent my second surgery to create a j-pouch: an internal pouch with my small intestines. Now all I have to show for what I’ve been through are 10 very little scars on my tummy.

I always thought losing a part of me would make me lose who I am as a whole, but I’m actually more myself now than I ever was with my large intestine. I’ve learned to stress less about the little things, love myself as I am right now and always search for the positives, because almost every situation has them. Having IBD has shaped my life in weird and wonderful ways and even if I had the chance I’d never change what I’ve been through because it’s made me who I am today.

Real Talk With Dave: Diabetics Take Over Disneyland

Ever since I was diagnosed with Type 1, I had always felt like something was missing. I was missing the social aspect of Diabetes. I had always wanted to be friends with another Diabetic or perhaps be a part of a Diabetic group of some sort. I had tried and tried to find a group, but for some reason, things weren’t working out for me. When I was in high school, I decided to go to a support group for T1D in hope of finding other Diabetics my age who I could be friends with and connect on a greater level with, but for some reason, it didn’t do the trick for me.

Fast forward to this year, this new year, 2018, things changed for the better. I had always been shy around new people at first and somehow developed a form of anxiety from not knowing the people I was with and not feeling a sense of comfort and safety around those I was with, however, this year, I made it my goal to get out of my comfort zone and be more involved in the Diabetic community and do more than just connecting with other Diabetics via Instagram.

During the first week of this new year, I saw an ad for a Type 1 Diabetic meet-up at Disneyland hosted by the organization, Beyond Type 1. If you know me, you would know that I am obsessed with all things Disney and am in love with Disneyland, so I felt like that was a sign that I just had to go. After thinking about it, going back and forth, I remembered my goal for this year, to get more involved and out of my comfort zone, and so I did, and boy am I glad I did!

On Sunday, January 7, 2018, I woke up bright and early to go to the Happiest Place on Earth to meet up with a group of some very amazing Diabetics doing some very amazing things!

I hadn’t met any of them before, only through social media, and some I didn’t even know via Instagram, so I was a bit nervous, but very excited to meet everyone. As I walked into Disneyland alone in search for the group, I couldn’t help but be filled with thrill and excitement as I was finally going to be with people that I could be completely myself around, as could they, and we wouldn’t necessarily have to worry about Diabetic things as we were all together, dealing with the same exact things.

As I finally found the group, I was ever so kindly greeted by some of the nicest and realist people out there. Everyone who came to the meet-up were rocking their Dexcoms (CGMs), Insulin Pumps, blood glucometers, and Insulin pens. When I found that everyone was wearing their sites so proudly, I suddenly felt very comfortable to be a part of such an amazing group. I had never been around Diabetics who seemed to understand completely all the struggles from wearing sites in public to dealing with lows and highs on the go, so it was very refreshing to stop and just think how it was okay to experience all the Diabetic issues that day as literally everyone was dealing with lows and highs throughout the day.

As we walked around the park, went on some fun rides, ate lunch and had ice cream, we all shared some really special moments! Comparing Insulin pumps, recommending Endocrinologists, treating lows, sharing diagnosis stories, hashing out all the daily struggles, and pumping Insulin, we all just understood it. Most of us had never met face to face, yet because we were all Diabetic, we instantly became friends because of that one special bond we shared. As the day progressed, we all got closer with each other and shared many laughs and good times with one another.

For once, I was very comfortable being a Type 1 Diabetic because this time, I wasn’t the only one. It almost felt like we were the honorary guests of Disneyland that day as we all knew how hard T1D is and we came to celebrate for a day the hard work and effort we put each day into our health! By the end of the day, we had all become the best of friends, leaving us with nothing but hope and happiness!

This was honestly one of the best Diabetic days I had ever experienced in my 9 years of living with Type 1. After seeing how each person from the group had dealt with their health so confidently, I felt so hopeful about the future of living with Diabetes and I felt as though I can keep on going in this fight against T1D.

We all came from different backgrounds and we all had a different story to tell, but when we all came together, we felt like the most powerful group of people as that is what Diabetics truly are, brave and amazing people!

So don’t be afraid to try new things that will benefit you and your overall sense of wellbeing. Had I not gone to this T1D meet-up, I would have been feeling a bit lonely and depressed about my Diabetes. Now, I feel energized and revived in a sense, with new hope and assurance for all things Diabetes! Maybe even you could start a Diabetic meet-up in your town, you may end up meeting lifelong friends and finding hope of a cure one day!

 

Live well,

 

Dave

Call to Action for Innovators and Patient Entrepreneurs

A call for action to patient entrepreneurs in the area of cancer to compete at the Lyfebulb-Helsinn Summit for the first ever Lyfebulb- Helsinn Innovation Award

  • The Award recognizes Patient Entrepreneurs’ Innovative Efforts and Ideas for cancer and cancer supportive care using drugs, medical devices, consumer products, or healthcare information technologies
  • Newly appointed jury panel members unveiled
  • Deadline for submissions: January 22, 2018

 

MONACO, PRINCIPALITY OF MONACO and NEW YORK, NY, JANUARY, 9, 2018:

Lyfebulb and Helsinn Investment Fund S.A., a fund focused on early-stage investments in areas of high unmet patient need, invite patient entrepreneurs that have embraced and endured the real life experiences of cancer to compete for the Lyfebulb-Helsinn Innovation Award.

It has been announced today that:

  • Carolyn R. “Bo” Aldige, President and Founder of the Prevent Cancer Foundation
  • Stephen Squinto, PhD, Lyfebulb Chairman and Co-Founder, Venture Partner at Orbimed, and Co-Founder of Alexion
  • Professor Patrick Rampal, MD, President of the Scientific Center of Monaco
  • Professor Franco Cavalli, MD, Director of Oncology, Oncology Institute of Southern Switzerland
  • Professor Françoise Meunier, MD, EORTC Director Special Projects

 

are the newly-appointed jury panel members of the first Lyfebulb- Helsinn Innovation Award.

The Award will recognize outstanding entrepreneurial potential to commercialize innovative efforts and ideas to better manage and improve the quality of life of cancer patients with respect, integrity, and quality, using drugs, medical devices, consumer products and healthcare information technologies. Established companies of all sizes founded by cancer patients, cancer survivors, or those having a close relative with cancer, who have created a product to address issues encountered by cancer patients, are invited to submit applications by January 22, 2018,  through the Lyfebulb-Helsinn Innovation Summit & Award website, where more information regarding eligibility and key criteria can also be found.

Ten finalists will be selected by Karin Hehenberger, MD PhD, CEO and Founder of Lyfebulb, and Mr. Riccardo Braglia, Helsinn Group Vice Chairman and CEO, and invited to compete at the Innovation Summit which will be hosted on 26-27 March 2018, by Helsinn Investment Fund at the Monte-Carlo Bay Hotel and Resort, in Monaco, Principality of Monaco. The Summit is founded upon Lyfebulb’s concept of Patient Entrepreneurship and Helsinn’s determination to provide the best supportive care for cancer patients and to improve the health and quality of life of every person affected by cancer. At the summit, the top finalists will be chosen by a panel of experts through a special “pitch session.” In recognition of the best innovative efforts and ideas, a symbolic monetary prize of USD 25’000 will be given to the entrepreneur winner to advance his/her business and use his/her life expertise to help manage the burden of cancer.

“At Lyfebulb, we come into contact with many people who are putting their own experiences with cancer towards developing solutions to help others. Now, for the first time, patient entrepreneurs have the opportunity to receive exposure and financing toward their companies through a targeted event to help them advance their cause,” says Dr. Karin Hehenberger.

Riccardo Braglia added, “Lyfebulb is about encouraging the best in patient entrepreneurship, drawing on the talents of people with first-hand experience of the cancer journey to help develop innovative approaches to cancer supportive care, and this is very much aligned with Helsinn’s journey. We are delighted of the jury panel – their expertise, experience, industry knowledge and dynamism in helping people with cancer will be invaluable.”

 

About Helsinn Investment Fund

The Helsinn Investment Fund is focused on early-stage investments in areas of high unmet patient need. Backed by the Helsinn Group, and guided by Helsinn’s core values of quality, integrity and respect, Helsinn Investment Fund aims to help companies with innovative technologies to transform new ideas into commercial solutions with the potential to impact health-related quality of life of patients.

Drawing on Helsinn’s over 40 years of investment into research and development and commercial expertise, the investment fund selects companies with technologies in a range of areas including cancer therapeutics and diagnostics, cancer supportive care, metabolic and gastrointestinal disorders, and dermatology conditions.

For more information, visit www.helsinninvestmentfund.com

 

About the Helsinn Group

Helsinn is a privately owned pharmaceutical group with an extensive portfolio of marketed cancer care products and a robust drug development pipeline. Since 1976, Helsinn has been improving the everyday lives of patients, guided by core family values of respect, integrity and quality. The Group works across pharmaceuticals, biotechnology, medical devices and nutritional supplements and has expertise in research, development, manufacture and the commercialization of therapeutic and supportive care products for cancer, pain and inflammation and gastroenterology. In 2016, Helsinn created the Helsinn Investment Fund to support early-stage investment opportunities in areas of unmet patient need. Since 2012, Helsinn has been coordinating clinical and regulatory activities in China from Beijing and in 2017 established an office in Shanghai to pursue commercial activities. The company is headquartered in Lugano, Switzerland, with operating subsidiaries in Switzerland, Ireland, and the U.S., as well as a product presence in approximately 190 countries globally.

How to Turn Your LYFE on in 2018

The holiday season is the best time of the year, filled with family, food, and laughter! As much as everyone loves gingerbread cookies, pumpkin bread, and all of the holiday drinks, too much of a good thing can take a toll on our health goals. Here are some recommendations on how to start the new year off strong, and stick to your goals!

  1. Make sure your health and fitness goals are attainable! Setting goals that are challenging, but reachable, is key. An example of this could be, going for a 30-minute walk or run everyday, cutting refined sugar out the diet, consuming less meat (especially red).  For Type 1’s, having a lower A1C, eating less carbohydrates, or food logging daily could be great goals!
  2. Don’t forget about your mental health.  This time of year drives motivation to get healthy and “fit”, but often, we forget to take care of our mental health. The holidays can be a stressful time, and it is important to recharge mental so you can start 2018 fresh! Yoga, meditation, reading, journaling–  anything that brings you joy and releases stress should be a priority, just as much as a hard workout!
  3. Find a friend! Whether it is a workout buddy, an “Instagram friend”, or just a close friend who you share your goals with– it is important to have someone to share the journey with, and keep you accountable!

Remember to give yourself some credit! Celebrate the victories along the way, big or small.  

Lyfestories: Jon Tijerina– Outsmarting His Diabetes

3 years ago, my persistent nerdiness brought me from Texas out to sunny California to study at Stanford School of Medicine. I was surprised to find incredible research and developments not only at the medical school, but in the overwhelmingly supportive and innovative diabetic community!

After years of feeling like I had to go it alone, in and out of diabetic burn-out and meal-time anxiety, I finally found the encouragement and positivity I needed to refresh my mindset and management.

Diabetes has been part of my life for as long as I can remember. I’ve seen the full gamut of treatments, from my grandmother explaining that her “medicines” came from cows, to my father’s diagnosis and all the finger-pricking, pill-swallowing, and (eventual) groan-inducing injections that followed. There had to be a better way.

13 years ago, I was diagnosed with Type 1 Diabetes after a family trip to Guatemala (which I mostly spoiled with my constant trips to the bathroom and incessant napping). Thinking I had to resign myself to pinching together the little fat I had to inject the rest of my life, I was all-in when offered the chance for an insulin pump and CGM in college.

The technologies weren’t exactly a silver bullet (big shout out to CGM alarms for sleep loss), but they instantly made running collegiate track and maintaining my glucose during times of stress (i.e. college finals) more manageable.

I never expected that 5 years after going on a pump system, I would be “jailbreaking” my own insulin pump to receive instructions from an incredible (but NOT FDA-approved) app called Loop. But here we are!

After a lot of research, a lot of discussion with my endocrinologist, and a lotttt of CGM sharing with my mom (mistake), girlfriend and basically anyone who would be ok with getting annoying alarms for me, I decided to download this software that allows an algorithm on your phone to send temp basals to your insulin pump…. all by itself… every 5 minutes!

The Loop system takes your CGM readings, insulin-on-board, and carbohydrates-eaten into account when making its calculations and can even predict when you’ve miscalculated your carb intake and make an automatic correction! This functions similarly to the FDA-approved Medtronic 670G hybrid closed-loop system (the only FDA-approved closed-loop to date) that has recently become available, although it allows you to choose which CGM you prefer and is highly configurable. Again, Loop is NOT FDA-approved (see below for disclaimer).

3 weeks after beginning my journey with this closed-loop system, I have to reiterate nothing is a silver bullet for diabetes management. The system requires some computer and programming competency, and like any computer program can have malfunctions. Electronics and connectivity come with their own troubleshooting, but I couldn’t be happier with how this system has drastically reduced my mental workload (and the sleep!).

After a lifetime being surrounded by diabetes management, I feel incredibly lucky to be riding the next wave in treatment. A huge and profound thank you to the diabetes community for coming together around issues in our treatment, and solving the problems we know need to be addressed now!

*The opinions expressed in this blog do not reflect professional treatment recommendations, the opinions of Stanford University, Stanford School of Medicine, or Stanford Hospital and Clinics. Any changes to diabetes management regimes should be discussed with the patient’s endocrinologist or primary care doctor. Any persons adopting a non-FDA-approved system of treatment do so at their own risk and should proceed with appropriate caution.

Jonathan Tijerina is a 3rd year medical student and research coordinator at Stanford School of Medicine. He teaches the med school course, Diabetes 101 for Healthcare Providers, and started the Bay Area Running Group for diabetic teens learning to manage their glucose on long running ventures. IG: Jonathan_David_Tijerina

 

Real Talk with Dave: You Don’t Know What It’s Like To Feel So Low

 

            Each day, we are each given a choice as Diabetics. A choice to take the best care of our health or the choice to be laid back and not as careful. Diabetes is hard work and sometimes, we go through a burnout phase where we may be care free of our Diabetes and not put as much focus on it as usual. However, each day, whether we work hard at our T1D or not, we each face lows, highs, sick moments, and feelings that are indescribable. The main focus I’d like to discuss is primarily on lows.

Lows are the absolute worst feeling a Diabetic can get. Low in terms of blood sugar, energy, focus, strength, and mental capacity. Lows take so much out of us. They make us feel like we’re dying in a sense, and yes that sounds a bit dramatic, but that is the honest description that a Diabetic will say it feels like, just ask any person with Type 1 Diabetes. I often say that lows “hurt” and that could mean a variety of things. My body, my muscles, my bones, my mind, or even my emotions. Lows have a way of playing with the person who it decides to attack.

As a Diabetic of 9 years, I have learned several different ways to cope with and manage lows in all sorts of settings, as each low is unique and different, yet all have some similar symptoms. Throughout the years, I have tried to explain to people who don’t have Diabetes what it’s really like to have a low blood sugar. Though many people just don’t understand, some do try and empathize with me and see how horrible they can be. As much of a description I may give, I always mention though that a non-Diabetic will truly never know what it feels like to have a low, as much as I try and describe it. The pain, the fear, and the shock it has on the person is something I wish nobody had to face.

Some lows are better than others. Low blood sugars in the 60mg/dL-70mg/dL range are not so bad, but anything below 50mg/dL, that’s where things can get scary. Severe lows contain symptoms such as shakiness, sweating, fast heart beat, fear, panic, nausea, lethargy, etc., just to name a few, but, as mentioned, each low is different and each Diabetic can feel their own unique symptoms. I think most of us know the cause of a low blood sugar, but for those who don’t know, intense exercise, too much insulin, and not enough consumption of carbohydrates/sugars are the main ways low blood sugars come to be.

The reason I am writing about lows are to mainly spread awareness on this issue. I can remember countless times in which I simply avoided doing certain activities or sat in fear during a certain situation (such as classes, work, travel, etc.) as I was constantly worrying about going low. High blood sugars are different in the sense in which you may feel very sick still, but you have a larger and somewhat safer timeframe to treat the blood sugar before it gets too serious. Yes, I have had Diabetes for 9 years, but I almost feel as though I will never fully get over my constant fear of lows. Lots of people have shared over time that they are very afraid to go to bed each night as they are worried they’ll go low and not be able to wake up from that low and that is exactly why I am writing on this specific topic, to share what us Diabetics truly go through on a daily basis.

Diabetics are fearless and I think it’s safe to say that we put up with so much and have gone through so much over the years of being Diabetic. We face so many scary and life altering challenges every moment of every day, most of which goes unnoticed, that is why we must continue to spread awareness, seek support from as many people as possible, and create a safe environment in which if emergencies do arise, we will at least feel as though we are in good hands.

Diabetes is tough, but we are strong. Diabetes is scary, but we are brave. Diabetes is a big deal, but we are so much bigger than this disease.

Live well,

Dave

 

It’s Cancer of the Lymphatic System

I was sat in the ENT department waiting room, dreading hearing my name being called. It all began a month earlier. I had just arrived back home from a long overdue honeymoon. I was well rested and eager to get back to my dream job, which I had not long started. This is when I noticed several lymph nodes on my neck began to swell. I went to see my doctor who urgently referred me to a specialist. After many tests and biopsies, I was awaiting the results.

My name was finally called, my husband and I were escorted into the specialist’s office. We sat down and the doctor said, “There’s no good way for me to tell you, I’m really sorry but you have Hodgkin’s Lymphoma. Do you know what that is Kate?” I nodded. I had watched a few people go through this horrid disease at a similar age to mine. “It’s a cancer of the Lymphatic System.” I replied. I looked over at my husband, his eyes were wide. We both felt like we had just been hit by a bus. I didn’t cry until we left the doctor’s office. I was trying to process it all in my head; how could this happen.

I was 26, healthy, happy, fit, no history of cancer in my family. Why was this happening. Was this it? I have two young children, are they even going to remember me?

How bad is it? Has it spread to my organs, or my bones? I spent most the journey home asking why, and how.

I felt out of control. To confirm the stage and the treatment plan it could take a month. I could not go through feeling this broken for another month. I decided to take control! I believe that everything happens for a reason, so I started thinking back to some memory or experience that would help me here.

I finally knew why had taken all those nutritional advisor courses. I had done some work in the nutrition field and had studies many cases where dietary change had cured people of certain illnesses. I knew all about the foods I should and shouldn’t be eat. My diet was something I could control. I knew that although curing cancer with diet alone is almost unheard of, if I use my knowledge alongside chemotherapy, I would surely be improving my odds of beating cancer.

Instead of going home we went to the local supermarket and started filling the trolley full of fruits, vegetables, whole grains and anything plant based. Completely giving up meat, and dairy for the most part. I began researching about anti-cancer diets, superfoods and Hodgkin’s Lymphoma, because I knew that knowledge was power. The best way to win the war is to know your enemy and its plans.

I began chemotherapy on 26th October. My treatment plan was set for 6 cycles, that’s 12 chemo sessions, each two week apart. That amounted to 6 months of going through chemotherapy.

Now I am a person whose glass is always half full even if there is nothing left in the glass. But cancer and treatment has really tested my optimism. But I have learnt to deal with many of the ‘glamorous’ side effect that chemotherapy has brought:

  • Establish a routine – Take the first cycle to familiarise yourself with how you feel and on which day this starts and end. Keep a journal of what you eat, roughly when and what medication you take. Although the time scale and intensity of the side effect can be different after each treatment, overall there will be a pattern. For me the worst is the bone pain which begins on day four or five.

 

  • The 6 P’sPrior Preparation Prevents Piss Poor Performance – It’s a saying that the British army like to drill into the recruits from the very beginning. I find it very fitting for most things in life. Having established a routine, prepare accordingly. If you know you get constipated, take some medicines to prevent this. If you get a sore mouth on day two, start gargling that mouthwash.
  • Drink Water and Eat Plant Based – Water will help flush toxins and drugs out of the system, while plant based nutrition is the most natural and will help heal and mend your body. Refer to your note’s, and figure out which foods make you feel better or worse. There will be many taste bud changes, so eat what you can stomach.
  • Reach out to people I stated an Instagram page @cancerchemocarbs. I wanted to reach out to others who are going through cancer and treatment. If I could help just one person, in any way, I would feel better. I have met some beautiful people. From different backgrounds, cultures, and countries. It really makes you realize that cancer can affect anyone.

 

The most important thing I’ve learned: stop dreaming and start living. For years, my husband and I have spoken of grand plans, and what we want to do, but have never gotten to fulfilling these plans. This illness has happened for a reason, one that in ten years’ time I will know, I’m sure. I am determined and I know that something good will come from this illness. The best view comes after the hardest climb!

 

Real Talk With Dave: Living With Diabetes, LITERALLY.

Each day, most people wake up to a fresh new start. People living with Type 1 Diabetes, however, tend to be going through something 24/7, to the point where they don’t end one day and start a new day. Diabetes carries throughout the night, waking up the person with low blood sugars, ripped out sites, alert messages from various medical devices, frequent trips to the bathroom, or no insulin going through. Through these experiences, one may feel as though they are not actually living, almost as if they are just doing what they need to in order to cater to the demanding needs of Type 1 Diabetes. That doesn’t have to be the case.

When we think about our lives, we each have different drives, motives, and passions in life that we want to achieve. Having a chronic disease may make it very difficult to find a balance between a normal life and a life where we are actually healthy and doing everything in our power to stay in control. It’s all in the mind, though.

If we tell ourselves how we truly want to live our lives to the fullest, we will get there.

Nobody wants to sit at home and worry about their Diabetes, having to constantly do what it tells us to do. We are the ones who are in control.

The day to day experiences we go through with our Diabetes can be very draining and overwhelming to cope with, so we need to find a balance where we can still maintain our life outside of the Diabetes world. Living your very own purpose can and should be done. If Diabetes seems to get in the way, it’s really not. It’s just adding more experiences to go through and to have knowledge on for the future or to help others. Don’t get me wrong though, we still have those very dark days where we can’t seem to find peace with our numbers and overall wellbeing, but it is the good days in which we can be a light for others and show them that despite what we go through every moment of our lives, we can still be kind to one another and live, actually live.

I personally have had my own personal battle with Diabetes and though I still fight the fight like no other each and every day, I live the life I choose to live. I want to be helpful to others. I want to share, create, and learn. I want to go out and explore the world, and you know what, that is exactly what I do. I don’t let Diabetes determine what type of life, let alone what type of day I am going to live. We all go through Diabetes a little differently and it takes time for one to truly own this disease and not let it be in control, but trust me, it can and will happen to you, and when it does, you will feel like you have just crossed the finish line to the race of life!

Dave

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?

weronika-kowalska-coming-out

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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