I was diagnosed with type 1 diabetes on January 19, 1999, at a small clinic in my hometown of Bridgetown, Barbados. On this morning in January, my life changed in such an unusual way. A simple visit to our family doctor – not for myself, but for my Nan! – resulted in a urine sample that would change my life forever. Now, after more than 20 years of living with type 1 diabetes, I look back on this day as the day I started to LIVE.
For many years after my diabetes diagnosis, I struggled. I struggled to feel normal, in a country where there are few people with type 1 diabetes, I struggled to cope in an environment where I felt different to my friends and family, and I struggled to be understood. My first few years after my diagnosis were littered with failure, disappointment, loneliness, stigma, sleepless nights and many do overs. It felt like the race I was running, started late, and was filled with obstacles that no one else had in their lane.
In 2011, my life changed, when I attended the first Young Leaders in Diabetes Programme, hosted by the International Diabetes Federation, in Dubai UAE. Imagine, a young adult from the Caribbean, who walked her whole life feeling like she was alone and disadvantaged, entering a world where diabetes was looked at positively and where, people who were thriving with their condition gathered. It was like seeing in colour for the first time. Looking through my new diabetes glasses, life was so vibrant, and full of many possibilities that were in my blind spot before.
The years that followed completely shaped who I am today. As my passion for helping people living with diabetes grew, it slowly turned into my career. Working and volunteering in diabetes and Non-Communicable Diseases took me to every corner of the globe and taught me so many lessons. I truly believe that I am made up of pieces of every person, interaction and opportunity I was given. From volunteering in Tanzania, to climbing Mount Kilimanjaro, to speaking on panels and stages around the world and consulting in the Caribbean Community, I have learnt that every individual you interact with is extremely important, and that every single life matters. When you focus on changing one life, empowering one soul and educating one mind, this transforms the world.
My love for people living with diabetes, grew to a passion to help people living with all NCDS to now a focus on empowering all people living with and/ or affected by any allergy, condition or disease. In addition, I truly believe that all people, regardless of the country that they live, should have equal access to quality medication, supplies and the tools needed to live their best life possible, with their condition. This is the mission of The Living Collection.
The Living Collection, which is the first of its kind in the Caribbean, is a lifestyle brand that specializes in designing custom medical products that enhance your health, your style and your life. With our first products launched, The Living Collection focuses on creating fashionable and functional medical jewellery, created in Barbados, and shipped worldwide. As a person who has lived with a chronic condition for more than 20 years, I have always strived to find ways to empower people AND save lives! This is the perfect blend!
I have dreamt about The Living Collection for many many years. For many years I doubted that I had what it took. Would it resonate with people on my home island and throughout the Caribbean? Was it was worth the risk? I was scared to fail, and I was scared that this disease that I grew to “love” and manage so well, would hold me back once again.
As my diabetes career grew, and the opportunities constantly came, I found myself constantly giving up what I wanted most, for what I wanted now. So….with the support of my family…I launched The Living Collection Inc.
2020 was a year unlike any other in our history. It brought out vulnerability in all of us. But as Brené Brown says, “Where there is vulnerability, there is great innovation, creativity and change.” It’s my mission to use these moments to change the world.
T1D Mastery helps people master type 1 diabetes by navigating the overwhelming amount of diabetes information, and delivering it in a way that sticks!
Since becoming a parent I’ve had to make my own type 1 more of a priority, which can be hard at times with two young children. Thanks to the support I get from my whānau, I’ve learned that it’s ok to take some time out for myself – and I’m proud to say I’m the founder and learning designer behind T1D Mastery.
What’s been the most surprising thing you’ve learned since you started?
Everything takes longer than I expect it to. I’ve really had to adjust my expectations and timeframes, especially when navigating my own type 1 diabetes myself and a young family that we’re raising here in New Zealand. 2020 definitely put a hold on lots of my big T1D Mastery business dreams, as my priorities had to move to our plumbing business. BUT as we move towards the end of the energy I can feel the fire in my belly coming back.
What reservations did you have when you were first launching? Did any of those worries come true?
I was nervous that being open and honest about my type 1 journey that people would think I was being dramatic. However, I found with every post or blog my confidence grew and I was able to loudly and proudly take ownership of the highs and lows of my diabetes journey.
I realised I wasn’t being ‘dramatic,’ I was raising awareness. Lately I’ve been very involved in advocating for better coverage through PHARMAC, New Zealand’s healthcare agency, with groups like Patient Voice Aotearoa. We are continually fighting for fully funded technology for diabetes management, like CGMs, for New Zealand’s diabetes community.
So far, no one has actually outright said I was being dramatic, however they have reached out to check I was okay and now have a better understanding of the challenges people living with type 1 diabetes face daily.
How has it felt to share details about yourself in order to support the diabetes community this way?
I started T1D Mastery as part of my own journey to master type 1, knowing that if it helped one person it was worth it. Connecting with other people living with diabetes online has been incredible and I no longer feel alone. I hope by sharing my story encourages others to do the same.
T1D Mastery also impacts those who are not living with diabetes: While we may not be defined by our diabetes diagnosis, the fact is it is a massive part of our lives and to truly master diabetes we must embrace it.
I often share about the mental load of living with diabetes which can help parents and supporters of people with type 1 understand how their ‘T1 warrior’ may feel or what they’re going through. This can be incredibly powerful if the person with diabetes they support doesn’t or can’t openly share how they´re feeling.
What advice would you give to someone who is thinking of building their own business?
Do it! What have you got to lose?
Before starting, have a good think about why you want to do this. What is driving you to do this mahi? (work in Māori) This can be incredibly helpful when things get tough or don’t go to plan.
Don’t be afraid to reach out for help. You can’t expect to be good at every part of running a business. Focus on what you love to do and what you´re good at and utilise the strengths of others to help or to teach you how.
Hey everyone, my name is Ben. I’m 24 years of age and I’m a surfer and a Physiotherapy student, and I was diagnosed with type 1 diabetes when I was 11.
As a competitive surfer with type 1 diabetes, good management is crucial to being able to focus on my long-term goals, upcoming contests, and training. The last thing you want to have happen is for an unexpected hypo event to take your focus away from the situation at hand entirely. But training and contests can be tricky, especially when this active lifestyle contrasts with the rest days and rest weeks I need as I complete my Physiotherapy course at university. That’s why I’ve made a point over the last few years to create and stick to some systems that I know will allow me to stay on top of my diabetes no matter the circumstance I’m in.
Eating before bed: I have found that if I stay disciplined with snacking and when I eat my main meals, I am able to keep great control over my BGLs. The main thing here is trying to have my last meal about an hour and a half before I go to bed. This is definitely something I don’t stick to 100% of the time but by doing this consistently I have found that it gives me an eight-hour window where I really don’t need to worry about my levels.
Fasting for basals: I have found by giving myself days where I may do some form of time restricted eating (typically missing breakfast and eating lunch anywhere from 12:00pm – 2:00pm) I can ensure that my basal settings are great which is another bonus as getting this right takes the stress out of wondering whether my glucose levels will be trending upwards or downwards between meals.
Consistent meals, less snacking: Now I have had a number of things that have worked for me, one of which being intermittent fasting. The reason this has worked, similar to not eating before bed, is that if my basal levels are great then I essentially have another part of the day where I don’t need to worry about my levels. Eating within a 8-10 hour window just means that I’ve got a larger percentage of my day where I’m less stressed about my levels. Now intermittent fasting can be good but the same goes for eating a great breakfast, lunch and dinner without the in-between snacks. These in-between snacks are what I’ve found typically throw things out of sorts where it might be something we see as not big enough to bolus for or may be something we grab out of a jar.
Sure, diabetes can be very demanding, but a good way I’ve heard it explained before is to gamify the situation. Now this isn’t to say that diabetes is fun and that we should play around with it like it doesn’t matter, but with all of the technology we now have available, like being able to see the glucose trends using a CGM and being able to watch in real time how the basal and bolus doses are going, we can set some realistic short term goals for ourselves. This has been a real change in perspective for me, as we all have a long term condition, but these short term wins keep me motivated and prevent me from slipping into a rut.
Personally, I don’t know how my life would have gone if I wasn’t diagnosed with type 1 diabetes at 11. But what I do know is that diabetes has been a strong factor in influencing me to be very health conscious. Would I have developed an interest in strength and conditioning? Or Physiotherapy? I’m so interested in learning how my body responds to different forms of exercises, different foods, stress levels whether this be in the lead-up to competition or being put on the spot through Physiotherapy placements. I like to be optimistic with my diabetes. I personally believe that these systems I have put in place so far make keeping my blood sugar within range easier and less of a hassle.
I don’t want to limit my perspective to being just a healthy diabetic. By exploring what works for me, exercising regularly and developing a real interest in health and well-being I’ve set the important goal of striving to be the healthiest human I can be.
My name is Mellissa and I am 23 years old. I have been living with type 1 diabetes for the past seven years.
It has taken seven years for me to get to a point where I no longer am afraid of my disease. I had lived in fear for so long – fear of the number on the screen, or not waking up in the morning. I realize now that what I feared most was losing my sense of self.
However, in 2020 my life had changed completely when I found out I was pregnant. Living with type 1 diabetes at the same time was a big shift and required a tremendous amount of adjusting. Diabetes + pregnancy was always my fear! Why!? I now realize it was because of all the stories and cautionary tales I heard and read about, but I can say now I did not have to be afraid in the same way that I first thought.
The only fear I had was going into diabetic ketoacidosis (DKA). As the months went by, my glucose fluctuated a lot, which it was hard at first. I had to get used to having another person to care for inside of me. I had to always make sure I watched what I ate and how much insulin I needed so I wouldn’t go hypoglycemia or hypoglycemic. During the second trimester, everything was going back to normal and the growth of my baby was developing great. At that point I knew that I was doing well with my diabetes and my pregnancy.
Managing all of this during Covid-19 was hard because at first I could invite two people to come into the room with me when I went to the doctor, but then it went down to just one. At one point I had to be admitted to the hospital because of my sugars fluctuating all the time and my doctor wanted my glucose numbers to be between 4-7 mmol/L (72-126 mg/dL). I did not want to come into contact with other people while wearing the mask because it was so uncomfortable for me as I was getting short of breath fast, which I had to consider when I wanted to buy clothes and other stuff to prepare for the baby. Thankfully I was able to solve for that by ordering most of the things I needed.
Most of my challenges occurred as I was entering my third trimester. I had high blood pressure, shortness of breath, and preeclampsia. Weeks later I was admitted to the hospital to be kept under observation. While my pregnant days were coming to an end on the 7th of September, 2020, my bouncing baby boy came at 37 weeks!
When I gave birth I had to get an emergency cesarean section because he was so big (4.3kg/9lb.8oz.) and I had diabetes among underlying issues. At that point I was all afraid and crying. I knew that this was a possibility, but my expectations were still different: I was the type to butter up and oil down my stomach for my entire pregnancy so I wouldn’t have stretch marks! It worked for the most part, but after I had the surgery I ended up with a few around my navel. However I would say they were worth it!
Living with type 1 diabetes and being pregnant was a high risk, but knowing what I know now I would tell expecting parents in the diabetes community not to be afraid. Everyone has different experiences and bodies are different but you won’t know what to expect until you do it yourself. Ihad a great support system throughout my pregnancy, so I encourage other people with diabetes to build up their own communities and networks that are there to offer some really necessary support when it’s most needed. Be prepared and keep your physician’s number close so if you do have issues you can call and ask questions!
After the C-section, I was in a bit of pain and needed to take a few days to recover. While getting accustomed to my incision, I kept in mind that I did not want to walk with a slouched back despite the pain – so I made sure to walk with my back up straight as a proud mother with her big blessing. At that point I was so proud of myself and it built up my determination and brought me a lot of happiness, because I knew that I came a long way from where I started.
Much of this is based on my own journey and in observations and conversations with family, friends, and First Nations people I’ve encountered in my professional, personal and cultural lives. I was diagnosed with type 2 diabetes back in 2014, and it’s been a difficult journey to discover what my condition was, what it was doing to my body, and how I can manage it better.
I was brought up in a family of 14 living in a 4-bedroom housing commission house in Darwin on the outskirts of the Aboriginal camp in Bagot. I grew up amidst the struggle of feeding, clothing and schooling such a tribe, and I started my career as a storyteller soon after leaving high school when I took up a traineeship at the Central Australian Aboriginal Media Association (CAAMA) in Alice Springs. I was immersed in a world of Centralian First Nations languages, people, cultural protocols, and LORE.
I was fortunate to live and work on the Pitajantjatjarra homelands in the community of Ernabella (Pukatja) working at Ernabella Video and Television (EVTV) in a language only workplace where the Aunties ruled, and everyone did what they told us to do. This was a period of intense cultural immersion and learning cultural lessons: After stints of teaching remote media students at Batchelor College and setting up the national body, I entered the criminal justice system as a youth worker at the Brisbane Youth Detention Centre. So many young, lost, mainly First Nations souls. I moved to the adult system first as a Custodial Correctional Officer and then returned as a Cultural Liaison Officer. Much of my time working the adult system was explaining documents, rules and encouraging the First Nations boys to get educated to break the cycle of offending.
Many experienced trauma, were illiterate, and suffered from substance abuse (inhalants were the biggie at that time) and from abusive and broken homes. Life on the streets felt safe, and it was where they found a sense of family and camaraderie through other street kids. Crime seemed like almost a natural progression after dealing with food and housing insecurities and dulling childhood trauma through a substance habit, so these adolescents rotated through the juvenile justice system until they graduated to the adult system to join other incarcerated family.
I worked with a trauma-informed legal, therapeutic, and cultural support service on the Royal Commission into Institutional Responses to Child Sexual Abuse as the Queensland and Northern Territory First Nations engagement manager. I led First Nations community engagement and established a culturally safe space for First Nations survivors to give evidence to the Royal Commission. It was an absolutely traumatizing time for all involved. Throughout these positions, my main role was to digest then translate difficult and sensitive information and raise it in consultation with survivors, offenders, and suspicious clients in a way that engages them in the conversations.
This was such an important foundation to where I’m at today.
My lived experience is the basis of my role at Diabetes Australia, where, as I said in a 2020 interview with the Melbourne School of Population and Global Health, I work to “provide an Aboriginal and Torres Strait Islander cultural lens on our range of projects, resources and policies which seek to reduce the terrible burden and impact of diabetes in Aboriginal and Torres Strait Islander people and communities.” There are many well-articulated reports and directives out there which outline many ways to provide culturally competent care by making small changes to accommodate cultural differences and be more culturally responsive. The Indigenous Allied Health Association (www.iaha.com.au) has published a fantastic report titled ‘Cultural Responsiveness in Action; An IAHA Framework’ which is incredibly informative.
I believe it’s critical to provide the non-First Nations reader, clinician, or health professional with some understanding of the First Nations patient perspectives, in addition to offering some small changes to clinical practice which may improve the clinical experience for First Nations people and encourage greater participation in the journey. A wide range of obstacles get in the way of effective First Nations participation in the clinical experience, and it’s my goal to use my own journey to educate and empower Aboriginal and Torres Strait Islander people as well as clinicians to build stronger connections around diabetes management.
I was accepted into my nutrition course around the same time I was diagnosed with type 1 diabetes (I was diagnosed August 2015 at age 24). When I graduated, I wanted to create a space where women can find balance within their lives through nutrition and wellbeing. I went through many ideas within diet culture before discovering my true passion with a non-diet approach to diabetes management and weigh-inclusive care after reading the Laura Thomas book about intuitive eating, Just Eat It, and attending a workshop with AHEI, a NZ based social enterprise that do intuitive eating workshops around the Waikato.
That led me to start Find Balance: a non diet, weight inclusive nutrition clinic. We focus on helping women heal their relationships between food, their bodies, and themselves. I discovered that I love being able to truly help women to break away from diets and find real balance, and that it feels good to share details about myself and my diabetes. Find Balance assists people without diabetes in a clinic setting but it also allows them to see into the life of someone with diabetes and become more educated.
I had a lot of imposter thoughts when first launching: I’m not skilled enough. I won’tget any clients. I can’t do this. I had, and still have, anxious thoughts about not having enough clients to run a business – but that all seems so silly when I sit down and think about it, as none of those worries have come true. Our brains are hardwired to look at the negatives to keep ourselves safe – survival mode! – but what kind of life is living in the safe zone?! I learned to trust myself and believe that I can do anything I put my heart into. I encourage others who are thinking of starting their own businesses to stick to your values and your passion: Remember your “why!” It’s so easy to get sidetracked, but being able to bring yourself back to why you are following through with your idea is a great reminder!
Trusting myself and my body is one major thing I’ve learnt since living with diabetes. When I was first diagnosed, and still a wee bit now, I was hyper-focused on how much insulin I was taking (my total daily dose), and was obsessively checking my blood sugars 24/7. I was constantly comparing my insulin amounts and my numbers to previous days or to other people’s stats. I’ve slowly learnt that together, my body and me are trying our best, and if that means high numbers and more insulin one day compared to another, that’s okay! There’s no reason to judge or feel guilty; I need to just trust my body and myself and inject and move on.
My long-term goals are focused on education and dismantling diet culture, and I want to be able to support the diabetes community in any way that I can. I am the only person in my family with type 1, and when I was diagnosed I did not know a lot about diabetes. I would love to expand and educate the general public as well as people with diabetes on the non-diet approach, aiding them in breaking away from diet culture and trusting their own bodies. I would also love to educate adolescents around dieting in order to break the disordered eating cycle before it begins. I’m hoping to see the diabetes community be more open to a balanced approach to managing diabetes. Whether this will be with workshops or podcasts or another approach, I am not too sure yet, but I’m confident in the process.
Shaina Hatchell, BSN, RN, CDCES, is the author of Shia Learns and a recent Beta Change Minisode guest based in Washington, D.C.
I am a strong believer that my talents and life story are not for me. There is triumph in speaking about my life and using what some may see as my pain to fuel my passions.
My career as a CDCES nurse and now being an author of the Shia Learns series are all products of my career affirmations. When I started my personal journey of changing my life with affirmations, manifesting, and intentional living, my biggest goals were to become a certified diabetes educator and a published author. Today, I have accomplished both.
Shia Learns is a small percent of my company, E1T1D Assembly. Each 1 Teach 1 Diabetes (E1T1D) Assembly is a company I created to be a community for people living with T1D, their allies, and educators. The E1T1D business umbrella also encompasses diabetes education programs, and a mentorship program for future BIPOC nutritionists and nurses at historically Black colleges and universities. I will also be doing freelance diabetes education for teachers/non medical staff and starting a mentorship program for RN/RD students at HBCUs to increase BIPOC educators.
Since starting my own business, I have learned that it is okay to start over. Until December 2020, I was the CEO of Product of My Affirmation, lovingly called “POMYA”. It is an oasis of stories and products geared to helping women and men on their journey to becoming the best version of themselves. I started this business after overcoming suicidal ideation. I was extremely unhappy with my life until I decided to move across the country (to Los Angeles) and turn my life into one that I wanted to live. I did this by stating daily affirmations, choosing to live intentionally, setting life goals, and working towards them day by day. I wanted to start a brand that allowed for a community to come together, find inspiration and feel uplifted while having a safe space to share their stories.
Now that I have published my first book and am in the process of publishing the second, I am working on merging POMYA’s brand initiatives with my passion of being an advocate and devoted ally to the diabetes community – inspired by my brother’s type 1 diagnosis. I decided to step away from POMYA full-time to focus on E1T1D Assembly. At the same time, self love, self care, and believing in an individual’s ability to achieve whatever it is that they want are ideas I continue to reinforce to my patients and their families as a CDCES! I am patient with myself and my brand’s growth, which has made this journey rewarding.
I have received many personal messages from T1D siblings and people with suicidal ideation who have thanked me for my ability to share my life and family’s story. It is so important to step up as allies! We are the individuals who can bridge the gap and help better normalize diabetes conversations. Individuals living with diabetes deserve to feel normal and I will not stop until saying “I have diabetes” is normal and understood. I love speaking about both mental health and diabetes on my platforms. If being so transparent helps one person/family, then it has been worth it.
Follow @shialearns on Instagram, and check out Shai’s Minisode with Pei Yan Heng here!
In Latin America and in my country, Mexico, there is a lot of misinformation, taboos, and a general lack of education about diabetes – just as it happens around the world. Thanks to this attitude in our society, shame and silence come hand in hand for many people with a diabetes diagnosis. The situation worsens when they have suffered from stigma in their social, school, and even family environment.
As a person who has lived with diabetes for almost ten years, I know how it feels to speak out with fear of rejection just for having diabetes; for five years I went through a time of profound silence, where I wasn’t confident enough to tell someone about my condition or how I felt about it. Later, I met a huge diabetes community who supported me and gave me the confidence I needed to speak up for my diabetes. I was lucky to have found support in that community and in my loved ones, that’s why I couldn’t stop thinking about those who still lived in silence.
When I joined the International Diabetes Federation (IDF) Young Leaders in Diabetes Programme in 2019, I set myself the task of working on a project that would promote freedom of expression among people with diabetes and where they could empathize with those who felt like them.
That’s how my Instagram account Diabetes through Art was born. The name seeks to give diabetes a creative aesthetic and communicative look, proposing a different perspective toward something in life that doesn’t seem like that at first sight. The project consists of being a platform where the diabetes community, including people with diabetes, their parents, loved ones, or people in care of someone with the condition, can discover creative ways to express their vision of the world, or emotions related to diabetes, while promoting human understanding and respect alongside diabetes education.
While we still have a long way to go, nowadays Diabetes through Art has taught me that creativity is a beautiful way to break the silence and help people find better ways to manage their diabetes. I firmly believe that art it is a powerful tool that we should experience someday, especially if we live with diabetes.
My name is Andrea. I’m 21 years old and I’m an interior design student passionate about art and to give meaning to all things around me; that includes my type 1 diabetes.
Lea su postal en español:
En América Latina y en mi país, México, hay mucha desinformación, tabús y falta de educación sobre diabetes; tal como sucede en todos los rincones del mundo. Gracias a esta característica en nuestra sociedad, para muchas personas, la vergüenza y el silencio vienen de la mano con su diagnóstico de diabetes, y la situación empeora cuando han sufrido de estigma en su círculo social, escolar e incluso familiar.
Como persona que ha vivido casi diez años con diabetes, sé lo que se siente hablar con miedo a que te juzguen por tener diabetes; durante cinco años pasé una época de profundo silencio, donde no me sentía lo suficientemente segura para contarle a alguien de mi condición o cómo me sentía respecto a ella. Tiempo después, conocí una enorme comunidad de diabetes que me brindó su apoyo y me dio la confianza que necesitaba para hablar por mi diabetes. Fui afortunada de haber encontrado apoyo en esa comunidad y en mis seres queridos, por ello no podía dejar de pensar en quienes aún vivían en silencio.
Al unirme al programa “Jóvenes Líderes en Diabetes” de la Federación Internacional de Diabetes (IDF) en el 2019, me puse la tarea de trabajar en un proyecto que promoviera, la libertad de expresión de las personas con diabetes, y donde pudieran empatizar con quienes se sintieran como ellos.
Así fue como nació “Diabetes a través del arte” en Instagram, cuyo nombre viene a darle una mirada creativa, estética y comunicativa a la diabetes; una condición de vida que en primera instancia no pareciera serlo. El proyecto consiste en ser una plataforma en donde cualquier persona con diabetes, sus padres, seres queridos o personas al cuidado de alguien con la condición, descubran maneras creativas de expresar su visión del mundo o emociones relacionadas a la diabetes, mientras promueven el entendimiento humano, el respeto y la educación en diabetes.
Hoy en día “Diabetes a través del arte” me ha enseñado que la creatividad es una forma bellísima de romper el silencio y ayudar a las personas a encontrar mejores caminos para manejar su diabetes. Creo firmemente que el arte es una herramienta poderosa que deberíamos experimentar algún día, especialmente si vivimos con diabetes.
Mi nombre es Andrea, tengo 21 años, soy una estudiante de diseño de interiores apasionada por el arte y por dar significado a todas las cosas que me rodean; eso incluye mi diabetes tipo 1.
Do you know that song from the Miss USA pageants (“You’re one in a million” by Bosson)? Well, that’s sure how I felt when I was diagnosed with insulin allergy on top of having type 1 diabetes.
It’s a very rare condition, with only 0.1% of insulin-requiring people also living with an allergy. (Okay, fine, that percentage makes it like 1 in a thousand instead of 1 in a million…but still.) Along with type 1 itself and having a gluten sensitivity, it sucked. To top it off, there was no information available besides some scientific papers stating it was rare.
I learned that following my diabetes and gluten diagnoses, it helped so incredibly much to find others who were in the same situation, and see how they managed their daily lives and learn how I could obtain some of their wisdom. But now, there was nothing apart from the one A4 pamphlet the hospital gave me. Writing for me has always been a coping mechanism and I decided to share my ‘journal’ in the form of a blog, BlueGlu10, in the hope that the next person diagnosed with insulin allergy didn’t have to feel so alone and that they would know it can get better.
I’ve been lucky, six years after my treatment and I don’t have any recurring symptoms yet. But at least if it does happen again, I now know there is a solution. Scientists still don’t completely know how it works but it’s called desensitization and basically means that you get exposed to the insulin in increasing doses in the hospital. Starting with homeopathic amounts increased to a ‘normal’ dose of insulin after a couple of days. Each time your body does not show signs of allergy you can increase the dose. Sounds simple but don’t try it at home! The despair, the lack of knowledge, the insecurities, and the big lingering question of ‘what if this treatment doesn’t help’ were a lot to cope with back then.
Since then I’ve continued writing about my so-called ‘adventures’. For a while I focused more on the gluten free aspect of living my life, whereas now I’m starting to write up my pregnancy and there are plenty of hilarious draft posts on my phone about the new-mom life in combination with diabetes and trying to keep those sticky gluten-containing fingers out of my mouth.
As always, there’s the slight challenge of finding time and energy to write things up. Even though my blog doesn’t have a lot of followers, the ones that do read my stories are grateful, especially the fellow insulin-allergy adventurers. At the very least, my blog helps me to put my woes and sorrows in a different perspective.
In the Netherlands there’s a children’s show (Bassie & Adriaan) with a key message to keep laughing, no matter what. I try to write my posts with dry humor and a splash of irony / self-wit so that I can try to put a semi-positive spin on my everyday life, even if nobody actually reads it (which happens with some posts.) What my blog and my social media presence does for me is to put my mishaps in a more positive light and remind me that I’m not alone, even if I’m one in a thousand. With all the negativity in the world, there’s never enough #positivethinking!
Ken je dat liedje van de Miss USA beauty wedstrijden (“You’re one in a million” by Bosson)? Nou zou voelde ik me wel toen ik de diagnose insuline allergie kreeg bovenop mijn type 1 diabetes.
Het is (gelukkig) zeer zeldzaam, maar 0.1% van de mensen die insuline nodig hebben krijgen te maken met een allergie. Vooruit, dat is natuurlijk maar 1 per duizend mensen en niet 1 per miljoen maar toch. Bovenop het al hebben van type 1 diabetes en glutensensitiviteit kon dat er óók nog wel bij! Bovendien was er maar zeer beperkt informatie over te vinden behalve wat wetenschappelijke artikelen die benoemde dat het maar zelden voorkwam. Bedankt, daar was ik inmiddels al acther.
Na mijn diagnose van zowel de diabetes als de gluten merkte ik dat het zo ongelofelijk veel hielp om met andere die in hetzelfde schuitje zaten te sparren. Zo kon ik leren van hun ervaringen en zien dat het met een beetje tijd allemaal wel goed zou komen. Nu was er behalve een A4 brochure dat het ziekenhuis mee gaf niets te vinden. Schrijven is voor mij altijd al een uitlaatklep geweest en zo besloot ik om mijn hersenspinsels met anderen te delen in de vorm van een blog, BlueGlu10. Zo hoopte ik dat er voor de volgende die hiermee gediagnosticeerd werd wél informatie te vinden was en zij niet de eenzaamheid hoefden te ervaren zoals ik dat had.
Ik heb mazzel gehad, zes jaar na mijn behandeling is het nog niet teruggekomen. Maar, mocht dat wel gebeuren weet ik nu tenminste wat er over mij heen komt én dat er een oplossing voor is. Wetenschappers weten nog steeds niet precies hoe het werkt maar het process heet desensitizatie en houdt in dat je steeds een mini beetje insuline toegediend krijgt in een oplopende dosis. Met een ziekenhuisopname wordt er begonnen met een homeopatische hoeveelheid die uiteindelijk wordt uitgebouwd naar een ‘normale’ dosis. Telkens als je lichaam geen tekenen van allergie vertoont mag je weer een ‘trede’ hoger. Het klinkt heel simpel maar probeer het toch maar niet zelf! De vertwijfeling, onwetendheid, onzekerheden en vooral die grote vraag die steeds in je achterhoofd zit ‘wat als dit óók niet helpt’ was een behoorlijke last om dagelijks mee te dragen.
Sindsdien ben ik over mijn dagelijkse ‘avonturen’ blijven schrijven. Een tijdje ging dat wat meer over het glutenvrije leven, op dit moment ben ik bezig mijn zwangerschap te verwerken en er staan al meerdere hilarische punten op mijn telefoon om uit te werken over het leven van kersverse moeder in combinatie met diabetes en al die plakkende gluten handjes uit je mond te houden.
Zoals altijd is het lastig om de tijd en energie te vinden dus ik loop wat achter. Ook al heeft mijn blog niet bijster veel volgers, degene die het lezen zijn dankbaar, vooral diegene met insuline allergie. Zelfs als niemand het zou lezen zet mijn blog op zijn allerminste mijn dagelijkse frustratie in een ander perspectief. Net zoals er in Bassie & Adriaan gezegd werd; “altijd blijven lachen”. Dus probeer ik in mijn blogs maar met humeur en een vleugje sarcasme/zelfspot mijn avonturen op te schrijven. Want met alle negativiteit in de wereld kun je niet genoeg positiviteit hebben!
This year marks sixteen years since I was diagnosed with diabetes. I am now 32 years old, a teacher, the editor of Diastyl magazine – my country’s only diabetes magazine published by the IDF member organization VAZ Diabetiku Ceské Republiky – and above all, the mother of a two-year-old son.
I still remember the day I was diagnosed with diabetes. I hadn’t felt well in a long time because I had mononucleosis. I was hospitalized with a lot of sugar in my urine. I still remember that feeling; someone made a mistake, I thought…I don’t have diabetes, maybe someone else has it, but not me. I was absolutely convinced that the doctors were wrong – I even literally kicked the diabetes educator out of my hospital room, saying that I definitely didn’t have diabetes!
Well, it turned out that I did actually have diabetes and the diabetes educator came back the next day to try again.
I also remember feeling different and weird compared to my peers; I didn’t know anyone with diabetes and I had no one to share my experiences with. But a lot has changed since then; I have met a lot of great people with diabetes and I am grateful to be able to help organize various projects. For eight years I have been a leader at camps for children with diabetes. That’s where I met a number of friends and, best of all, where I met my wonderful husband, who also has diabetes. I also run Diastyl magazine, which deals with the lives and treatment of people with diabetes. It’s great to be part of a worldwide family!
I was also allowed to become a Young Leader in Diabetes (YLD), representing the Czech Republic in the International Diabetes Federation (IDF) World Diabetes Congress training program. I completed my training in Vancouver, Canada and I am very grateful for this opportunity. It was great to meet young people with diabetes from all over the world; I remember it very much and to this day, I stay in touch with the friends I made. I also took part in a European camp in Cyprus and I still like to remember the friendly atmosphere full of interesting and creative ideas! I would like to thank the IDF for providing these opportunities, and all those involved in organizing and promoting similar activities. It is so important that we meet and share our experiences and ideas!
Living with diabetes is not easy, but I am very happy to live in the Czech Republic. I don’t have to pay for insulin or other devices such as insulin pumps, syringes, glucometers, etc. In the Czech Republic, we have access to the latest equipment and technology to manage diabetes. Since last year, we can use up to 24 CGM sensors per year for free. I am very sorry that not all people with diabetes have the same access to insulin and advanced or basic treatment. This is an unfortunate reality. Diabetes treatment should not be affected by where a person lives or how much money they have!
I often think about what diabetes took from me. I have lost some freedom because I will never go without insulin and my insulin pump again, I will always have to think about the food I eat, and I need to be prepared to experience hypoglycemia. I will never be able to fast all day, regardless of my blood glucose. I will always have to pack all of my diabetes supplies into my purse or suitcase. I will never buy a mini handbag again, because I need to carry enough things with me to manage my diabetes 🙂
Still, I feel like diabetes has given me more things than it has taken away. Thanks to diabetes, I met many new friends both in the Czech Republic and around the world. Thanks to diabetes, I can help in camps for children with diabetes and participate in a number of interesting projects. One that I care very much about is a project I am involved with together with my boss and team. We organized an event for young people with diabetes aged 18 to 30 years where we talked about things like sex and diabetes, alcohol and diabetes, or diabetes and pregnancy with input from doctors and psychologists. I believe that sharing experiences between people with diabetes is very important and beneficial – for instance, since not everyone has a husband who also has diabetes, we talk about relationships and when and how to tell our partners we have diabetes.
Diabetes is actually such a challenge for me. For example, I had to figure out where to hide an insulin pump on my wedding day and how to handle pregnancy and childbirth. I also challenge myself to make the most of living with diabetes and I have learned a lot through adventures like trips in the mountains with a backpack on my back. Diabetes has also taught me more tolerance for others and for myself because it teaches me to appreciate the good things in life…as we say in the Czech Republic, if it’s not about living, it’s about all the shit that happens!
Přečtěte si pohlednici v češtině:
Letos uplyne už šestnáct let od chvíle, kdy mi byla diagnostikována cukrovka. Je mi 32 let, jsem učitelkou, redaktorkou časopisu Diastyl, jediného časopisu o cukrovce v mé zemi, a především jsem matkou dvouletého syna.
Stále si pamatuji na den, kdy mi byl diabetes diagnostikován. Tehdy jsem se už delší dobu necítila dobře, protože jsem onemocněla mononukleózou. Byl jsem hospitalizována kvůli tomu, že jsem měla zvýšený cukr v moči. Dobře si pamatuji na svůj tehdejší pocit: někdo udělal chybu, říkala jsem si …Já nemám cukrovku, možná ji má někdo jiný, ale já ne. Byla jsem absolutně přesvědčena, že se lékaři zmýlili – dokonce jsem doslova vyhodila edukační sestru z mého nemocničního pokoje s tím, že já rozhodně nemám cukrovku a edukovat nepotřebuji!
Samozřejmě se ukázalo, že mám diabetes a edukační sestra se druhý den opět vrátila zpátky.
Také si pamatuji, jak jsem se tehdy mezi svými vrtevníky cítila – tak nějak divně a prostě jinak; Neznala jsem tehdy nikoho s diabetem a neměla jsem tedy s kým sdílet své zkušenosti. Od té doby se ale hodně změnilo: potkala jsem spoustu skvělých lidí s cukrovkou a jsem vděčná za to, že mohu pomáhat s organizací různých projektů. Osm let jezdím jako oddílová vedoucí na tábory pro děti s diabetem. Tam jsem potkala řadu přátel a také svého manžela, který má rovněž cukrovku. Pomáhám také s vydáváním časopisu Diastyl, který přináší informace o životě s diabetem.
Také mi bylo umožněno stát se Young Leader in Diabetes (YLD) a zastupovat Českou republiku ve vzdělávacím programu IDF na světovém kongresu Mezinárodní diabetické organizace. Absolvovala jsem výcvik v kanadském Vancouveru a jsem za tuto příležitost velmi vděčná. Bylo skvělé setkat se s mladými diabetiky z celého světa; Ráda na to vzpomínám a dodnes zůstávám s některými z nich v kontaktu. Také jsem se zúčastnila tábora IDF pro zástupce evropských diabetiků na Kypru a často ráda vzpomínám na přátelskou atmosféru plnou zajímavých a kreativních nápadů! Ráda bych IDF a všem, kteří se podílejí na organizování a propagaci podobných aktivit, poděkovala za tyto skvělé příležitosti. Je tak důležité, abychom se jako diabetici setkávali a mohli sdílet své zkušenosti a nápady!
Život s diabetem není snadný, ale jsem velmi šťastná, že žiji v České republice. Nemusím platit za inzulín nebo jiné pomůcky, jako jsou inzulínové pumpy, glukometry atd. V České republice máme přístup k nejnovějšímu vybavení a technologii pro léčbu cukrovky: od loňského roku můžeme používat až 24 senzorů (v mém případě G5) ročně zdarma. Je mi velmi líto, že ne všichni diabetici mají stejný přístup k inzulínu a pokročilé nebo základní léčbě cukrovky. To je ovšem smutná realita. Léčba diabetu by neměla být ovlivněna tím, kde člověk žije nebo kolik peněz má!
Občas přemýšlím o tom, co mi cukrovka vzala. Ztratila jsem určitou míru své svobody, protože se už nikdy neobejdu bez inzulinu a inzulinové pumpy, vždy budu muset přemýšlet o tom, co jím, a musím být neustále připravena na hrozící hypoglykemii. Nikdy se nebudu moci celý den postit bez starostí o svou glykémii. Vždy bude mé zavazadlo kvůli kompenzačním pomůckám, jako jsou sety či zásobníky a sladkosti na hypo, těžší a větší, než kufry ostatních cestujících. Už si nikdy pravděpodobně nekoupím malou kabelku nebo psaníčko k šatům, protože s sebou neustále nosím spoustu dia-věcí.
Přesto mám pocit, že mi cukrovka více věcí dala, než vzala. Díky cukrovce jsem potkala mnoho nových přátel jak v České republice, tak po celém světě. Kvůli diabetu mohu pomáhat v táborech pro děti s cukrovkou a účastnit se řady zajímavých projektů. Pomáhala jsem například organizovat akci pro mladé lidi s diabetem ve věku od 18 do 30 let, kde jsme mluvili mimo jiné o různých “tabu” tématech jako je cukrovka a alkohol či diabetes a sex. Řešilo se také téma těhotenství při diabetu 1. typu. Akce se vedle lékařky účastnila také psycholožka a výživová poradkyně. Věřím, že sdílení zkušeností mezi lidmi s diabetem je velmi důležité a přínosné.
Cukrovka pro mě vlastně často představuje takovou výzvu. Například když jsem během svého svatebního dne musela přijít na to, kam schovat inzulínovou pumpu nebo když jsem řešila, jak zvládnout těhotenství a porod s čím jak nejlepší kompenzací. Snažím se žít aktivní život s diabetem a plnit různé výzvy, jako jsou například výlety do hor s batohem na zádech. Cukrovka mě také naučila větší toleranci vůči ostatním a vůči sobě samé. Díky nemoci se snažím svou energii věnovat především důležitým věcem a zbytečně neprožívat nepodstatné věci… protože jak se říká – když nejde o život, jde o hovno…