Caregivers: The Greatest Blessing of All

ibd-caretakers

As we wrap up Crohn’s & Colitis Awareness Week,

I reflect on the greatest blessing of all in my IBD journey: my caregivers, my dear mother and husband. From the constant rides into the city for doctors’ visits to packing wounds and changing PICC line dressings while helping me walk and shower after surgery, Mom, you picked me up when I was at my lowest points in life. From driving me to Cleveland Clinic and flying me to Mayo Clinic for surgery while spending countless sleepless nights in the hospital, Anand, you stood by my side when society told you you could have done better.

Many of our IBD journeys

would be incomplete without creating awareness for our caregivers and the act of caregiving. You see, folks, caregiving takes courage; it takes guts! When most people disappear from our lives, our caregivers stick around and show us our true worth as human beings, as partners, as sons or daughters, and not just as sick patients. Caregiving takes a real, unconditional love for the person who needs care and help during major illness. And, in the case of my caregivers, it has taken true dedication and perseverance to care for me through 20+ surgeries and hundreds of hospitalizations and procedures. In many ways, for my two caregivers, giving me life again has become their modus operandi, and for me, their love and support has become my ode for survival.

The thing is when we are young and chronically ill, it is next to impossible to ask for help. It makes us feel useless and ashamed that we can’t be as able-bodied as the rest of our peers. But to have two caregivers who swoop in every time, like the guardian angels that they are, is truly my greatest blessing. Thank you, Mom, and thank you, Anand, for being my two rocks. Every time I have wanted to give up, you have encouraged me to press on, insisting that my existence matters oh-so-much. So, if there is a single reason as to why I have kept fighting and facing this monster of a disease, it’s you both. You are my lifeline, the embodiment of love, and truly, my entire universe.

So, own your Crohn’s,

own your need for tender love and care, for there is nothing wrong with being taken care of sometimes. We too will have the opportunity to pay that kindness forward one day in our very own ways.

**This blog and my advocacy work are an extension of the love and support I’ve received from my caregivers over the years. It is an act of paying their compassion and humanity forward to you all, my followers and supporters. I dedicate this blog to my mother, my husband and my late father who fought Crohn’s Disease and colorectal cancer so valiantly and passed nearly 27 years ago. My IBD journey would be incomplete without the three of you.**

Keep Fighting Toward Your Fitness Goals

So I thought I’d share how difficult it is to live with a chronic illness and try and stay fit.

The picture on the right was last year… when I had just had a colonoscopy to determine how inflamed my bowel was. Shortly after, I was hospitalized due to my colitis. In that week I had lost around 8kg in weight in the space of 5 days. Everything I ate went straight out. I had been in decent physical shape externally but internally I was in bits. I felt incredibly weak. I had no energy, but I still tried to work and live my life as normally as possible. At the time I even tried to celebrate the fact I looked half decent. 🙈 But when you look at the photo closely, I look very skinny. I was then put on some heavy duty drugs to get my colitis in check. Gained loads of weight in hospital and then went home.

Fast forward to may of this year. I’ve managed to get to a decent shape however I’m the strongest I have ever been. I manage to beat my personal gym goals every week and my colitis seems to be under control. 🤛👏

I saw this photo in my feed and wanted you to understand that physically and mentally I’m in a much better place. Everything is going in the right direction and with more hardwork and dedication I’ll get to where I want to be.

Even last year I said I’ll have to start my journey again. It really got me down but if something is worth doing… it wouldn’t be easy….or everyone would do it 😅👌

It doesn’t matter where you are in your IBD journey. It will always keep moving forward it you BELIEVE you can do it

IBD May Be a Beast, But It Is Worth Fighting

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Real Talk with Dave: All about the Dexcom G6

Many people have been eagerly waiting for the Dexcom G6 to be announced.

Well, it just so happens that it is now FDA approved and available in June. I had the special privilege of being sent a Dexcom G6 to try out and so far, I am loving it. As promised, I wanted to share my open and honest opinion about this device, so I thought what better way to share my thoughts than through a blog.

First and foremost, I want to say how incredible this device is. I had the opportunity to see a mock-up of the device at the JDRF Type One Nation Summit and was even more excited to use this new product! The whole site and transmitter is about 33% thinner than the Dexcom G5. It is much more user friendly and has a longer wear time than the G5. You can now wear your site and get continuous glucose readings for 10 full days before you have to change out your site. You can also view your blood sugar readings on your phone, watch, and receiver that comes with the device.

One really exciting feature is that the Dexcom G6 does not require any fingerstick calibrations, which means you no longer have to prick your fingers for a manual blood sugar check anymore. You can now fully depend on this device to be even more accurate than before and allow you to have even more freedom in knowing what your blood sugars are. I have been wearing the Dexcom G6 for about a week now and have been comparing the G6 to the G5. For the first few days, I was wearing both CGMs just out of curiosity on how much more accurate the G6 really is. From what I observed, the G6 was way more accurate in comparison to the G5. I also would still check my blood sugars manually just to compare the numbers and my Dexcom was very close to the actual reading. It is intended to be 20 points above or below the actual reading, which it has been.

The device also has a new app in which there is a whole new design (similar to that of the G5, only better), and there are now more options for alerts and settings in which you can customize to your liking. Now, when having a low blood sugar, this device will alert you 20 minutes before a predicted severe low of 55 mg/dL, which I think is amazing that it can detect that for you. It truly does give peace of mind in knowing what to expect and when, giving you alerts ahead of time so you can try and prevent a bad low before it hits you.

The part of this device that I cannot praise enough is the insertion. Before, you would have to plunge a big needle into your skin and then remove it, leaving a plastic cannula deep into your skin. Now, all you do is apply to device to your skin, push a button, and within seconds, the device is in your body! When people ask me what it feels like to insert the G6, I like to describe it as “a puff of air hitting your skin, that’s it!”. The first (and only) time I inserted my CGM, I was blown away at how painless it truly was. This is going to be a huge game changer for children who have to wear a CGM as they will not feel a thing when the time comes to insert the device into their skin.

All in all, this device is great. I am obsessed at how this product works and helps me feel as a Type 1 Diabetic. It definitely allows me to live my life and not worry as much as I truly can trust what my readings are and know what is going on inside of my body. If medical technology is this good now, I am even more excited as to what the future holds for Type 1 Diabetes. With the Dexcom G6, Diabetes is not all bad.

Live well,

Dave

Real Talk with Dave: How to Stay Positive with T1D (Dealing with Burnout)

Have you ever felt overwhelmed with Type 1 Diabetes to the point where you just don’t want to deal with it anymore? You may feel the need to cope with your Diabetes in a different way. Many will go off their Insulin pump for a while and go back to daily syringes/ pen injections as a way to feel a sense of freedom from this disease. Unfortunately, us Diabetics cannot just “stop” Diabetes. We have to fight daily in order to stay alive. We have to take Insulin in different moments throughout the day and watch our blood sugars fluctuate from stubborn highs to difficult lows. At some point, we all go through a burnout phase where T1D just doesn’t feel bearable anymore, that is why I have put together a little guide as to how you can stand up to the burnout phase and keep on pushing through!

1/ Keep a positive mindset – This seems easier said than done, but trust me, in order to feel a positive presence on you as you go about your day, every morning, start the day fresh and new and remind yourself of all your accomplishments in life and how far you have come. Always let yourself know who you are and how brave and strong you are.

2/ Self-talk – Every day is different and some days (as we all know) can be very bad in terms of our Diabetes. There is a lot to think about throughout our day, things such as what our blood sugars may be, what supplies we need to have with us as we go somewhere during the day, and also planning for emergencies, that being said, we must make room for thoughts of reassurance. We need to talk ourselves through a bad low and tell ourselves that everything will be okay, just like it always is. We need to be our own friend who will be there when no one else is. Having positive and calm self-talk is a good way to walk you through your day and be your own hero.

3/ Do what makes you feel alive – we all face Diabetes every moment of everyday, and it can almost feel as though everything is about Diabetes. Sometimes, we may not want to think about Diabetes all the time (within reason), that is why we need to make time for other things in life that bring us true joy and help take our minds off of T1D for a bit. Doing something you love, such as going out with friends, playing a sport, or spending time with family can be the very thing that can help you cope with T1D burnout.

4/ Take a pump holiday – Though it may be difficult to keep your blood sugars in your normal range, taking a break from wearing your Insulin pump (if you wear one) can make you feel free and have one less thing constantly reminding you of your Diabetes. You can do this for a day, a week, or even a whole month, it’s really up to you. However long you need to take a break from wearing your pump, go for it, because what some don’t realize is that wearing a pump can change a person and mess with their emotions (in some cases) to the point where they feel “different”, which isn’t that case at all. Wearing a pump is a blessing and is what essentially keeps us alive each and every day.

5/ Accept your struggle – Just know that eventually, this T1D burnout phase you may be going through will go away and you will be able to get back in the game. Remember, we ALL face burnout periods in our life, but guess what? We all get over them eventually. Accepting the fact that you are stressed out, annoyed, and tired of T1D is sometimes what we need to get over that phase. Sometimes, just feeling the sadness you are going through is important and perfectly okay, because when you feel it, you work through it. It’s all one big learning process on how to cope with your thoughts and emotions. At the end of the day, we’re all humans. Diabetic or not, we go through tough life situations and working through them is just one way to grow as a person and be able to allow for empathy towards others going through difficult life situations.

6/ You are not alone – When you feel like all things are going wrong with your Diabetes, a great way to vent off and work through it all is turning to the amazing T1D community that is out there, waiting to help out in any way. Connecting with others (in person or online via social media) can help you as you will soon realize that you are not the only one dealing with burnout at the moment and that you can fight T1D together. This has been especially helpful to me as I was in a dark place for a while until I turned to the community for help and support. Now, I am at the happiest place I have ever been with my Diabetes and I realized that T1D is not all that bad.

7/ Live your life! – I get it, T1D is a horrible disease. But just remember, you are bigger, better, and stronger than T1D. Remember to smile through it all, laugh daily, and be kind to others. Make life how you want and always choose to stay actively positive, because when you are positive, whether you’re high or low, you will have motivation and strength to keep on going and T1D will just be one of those things in life we end up getting used to. When we feel like we’ve mastered T1D, we’ll be able to accept what’s on our plate at the moment.

I truly hope these tips and tricks on how to cope with T1D burnout helped you out if you are feeling this at the moment. It’s okay to be frustrated at times, but be sure to never stay in that phase forever. Life is too short to stay in a bad place with your Diabetes.

Live well,

Dave

Moving for Your Body

Let’s be real, working out can suck. Like really, really suck.


Growing up, running was always my punishment for the other sports I played (tennis, volleyball, and softball). We would run if we missed, run if we lost, etc. Running was never something I got to do, but had to do, rather. I’d had a distorted view of working out (outside of playing sports competitively) and I saw working out as punishment for what I ate, etc.

By pushing my body too hard, at the age of 21, I’ve already had shoulder surgery, five stress fractures in both my shins and lumbar spine, as well as four cortisone injections. So after years of putting my body through intense workouts to train, I am finally working out to heal my body and mind.

So what shifted in my love-hate relationship with “movement”? My mindset. While I used to view running, cycling, swimming as the enemy or the “worst part” of training, I now view it as something I GET to do. I get to move my body, as quickly or slowly as I please. I get to be outside. I get an hour to move how I want to– however feels good for my body. 

I used to push myself through a run when I could hardly walk, or through shin splints on a long run, now I don’t. Now, I run or bike when I want, put on a great playlist, and enjoy the movement, the celebration of what my body CAN do. I practice yoga daily because it is sustainable for me, and I love the mental and physical reset it provides for me. I focus on how it feels, what I need, and am very consious of my blood glucose levels when working out.

My advice to those who have a distorted view of gyms or physical activity, or even just need motivation to start working out is to find something you love, that you can sustain. Maybe for you this is dance, yoga, boxing, a long walk– or a multitude of act ivies combined.

“Speak like you love yourself. Eat like you love yourself. Move like you love yourself.”

Real Talk with Dave: Trusting Your Gut

When first diagnosed with Type 1 Diabetes, we are told how we will feel. Doctors and nurses come in and tell us what we may experience when we are faced with a low or a high blood sugar, but that’s about it. Mind you most of these medical professionals are NOT Diabetic, which means that they don’t truly know what Diabetes “feels” like. Not only are we not able to fully know what symptoms of T1D feel like until we experience them on our own, but we are never actually mentally prepared for how life is going to feel like from now on, from the good times, to the not so good moments. How we know how Diabetes is exactly like is by simply living with it and experiencing all the possible situations on our own time.

For example, in the hospital, a doctor would typically educate you on low and high symptoms (shakiness, headache, fast heartbeat, etc.), but that doctor doesn’t actually know what it genuinely feels like. When we are faced with our first low blood sugar as a Type 1 Diabetic, it can be a real shocker in the sense that we are not expecting it to feel the way it actually does.

I can remember my very first low when I was essentially “on my own”. I had just gone back to school (6th grade) two weeks after being diagnosed and hadn’t fully understood how important carbohydrates were when on Insulin. I went to lunch that day and didn’t like the bread on the sandwich I was eating, so I decided to not eat the bread and eat the protein inside the sandwich instead, as I thought I was being healthy. Of course, shortly after lunch and having not eaten the carbs I took Insulin for, I had a very bad low. The sweats, shaking, and fast heart beat were so prominent in that low of mine and I needed a friend to walk me to the nurse’s office, where I was given some apple juice to quickly bring my sugar levels back up. Scary, I know, but that was necessary as I then learned why this happened and how to prevent it from happening again.

Trusting your gut is key in living with T1D. You may have just checked your blood sugar minutes before and had a good number. Minutes later, you feel a bit funny but don’t think you could have gone low (or high) in such a short amount of time, but then, you do. You listen to your gut and trust your feelings and, you guessed it, a low. Had you not trusted your own gut, you could have been in for a really bad experience. This can happen in a variety of different situations as a Type 1 Diabetic. You can feel low symptoms when you are actually just fine. You can feel as though your blood sugar is high, when actually, you’re low. Knowing your body and how you feel when certain situations arise can be the thing that saves your life.

Nowadays, we have Continuous Glucose Monitors (CGMs) that tell us what our blood sugars are and where they’re headed, which can give us peace of mind as we go about our day, but can also create anxiety as we can see when we may be going severely low or high at a bad time (work, school, meetings, etc.). Though we can see our blood sugar readings being updated every few minutes, we should not rely on the level of accuracy 100% of the time. Often times, the readings on our CGMs can be way off. That is why we must trust our gut and know our bodies. Every now and then, I may find my CGM readings to be about 100 points off of what my actual blood sugar is, which is extremely dangerous. That just comes to show, always be the one in control of your body and your feelings. You can only depend on yourself to determine how you are truly feeling, and when you do, there is a level of peace in knowing that you were able to catch a bad Diabetic feeling before it caused an emergency.

 So always remember, YOU are in control of how you feel. Not your CGM, not your Doctor, but you.

Live well,

 

Dave

Havas Health & You and Lyfebulb join forces to improve the quality of life for people living with chronic diseases

Havas Health & You has announced a strategic partnership Lyfebulb that will provide a unique, differentiated means of putting the voice and needs of the patient at the center of everything Havas Health & You does for its clients

NEW YORK (PRWEB) MARCH 06, 2018

Havas Health & You, a global leader in health-and-wellness communications, announced today a strategic partnership with Lyfebulb, a patient empowerment platform that promotes a healthy, take-charge lifestyle for those affected by chronic disease. The mission of Havas Health & You is to support its clients in promoting healthy-living decisions across the entire health ecosystem.

“The Havas Health & You and Lyfebulb partnership further strengthens our shared commitment to creating meaningful connections that inspire healthy living,” said Dennis Urbaniak, chief digital officer of Havas Health & You. “By leveraging Lyfebulb’s successful track record of delivering innovative solutions for some of the most complex chronic conditions, we are demonstrating our focus on real-life results that matter.”

Lyfebulb connects patients, industry, and investors to support user-driven innovation. It has built communities of patients with chronic diseases and supported leaders in these communities through its Patient Ambassador and Patient Entrepreneur programs. By bringing Lyfebulb’s community into the Havas Health & You network offering, this partnership will provide a unique, differentiated means of putting the voice and needs of the patient at the center of everything Havas Health & You does for its clients.

“Our goal is to reduce the burden of disease in patients by bringing user-driven innovation at a large scale,” said Karin Hehenberger, M.D., Ph.D., the CEO, and founder of Lyfebulb. “Together with Havas Health & You and its broad network of clients, we will accelerate our ability to bring more comprehensive, patient-focused solutions to the marketplace.”

Presenting the full picture of any disease, from patient insights to their solutions, is a key differentiator for Havas Health & You in this new partnership. The relationships that Havas Health & You have with multinational healthcare companies, in turn, will enhance Lyfebulb’s ability to execute upon its mission to reduce disease burden for people with chronic disease.

# # #

About Havas Health & You
Havas Health & You join together the agencies and companies of Havas Health with the consumer health-and-wellness marketing communications practices across Havas companies around the world. The broadened entity and new name reflect the group’s future-forward positioning and expanded capability. Havas Health & You have built out best-in-class disciplines and integrated the many products and services the Havas agencies and companies offer across the health and wellness continuum, from Rx and OTC to health solutions.

About Lyfebulb
Lyfebulb is a chronic-disease focused patient empowerment platform that connects patients, industry (manufacturers and payers) and investors to support user-driven innovation. Lyfebulb promotes a healthy, take-charge lifestyle for those affected by chronic disease. Grounded with its strong foundation in diabetes, the company has expanded disease states covered into cancer, inflammatory bowel disease, and other autoimmune diseases.

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

Lyfestories: Jen White– Kidney Transplant Recipient

Hi my name is Jen (@mytransplantlife on Instagram). My page is educational in nature, as I’m a Registered Nurse with a graduate degree, having worked as a nurse educator, combining my health knowledge with my health experiences. My goal in starting my page was to be able to help others in their own health journey, whether with a chronic illness or through having a transplant, because it really is about spreading the LOVE!
I was diagnosed with Chronic Kidney Disease in my early 20s, as a result of idiopathic glomulernephritis (filtering units in the kidneys failing for no definitive reason). I was on hemodialysis for 3 months prior to receiving a kidney transplant in November 2008.
Both dialysis and transplantation are treatments for renal failure. I did not do well on dialysis, feeling sick before and after treatments. I was at very low kidney function when I started dialysis, in denial and also stubborn, as there was no way I was living on a machine for the rest of my life! After multiple ED visits and increasingly high creatinine levels, I was forced into doing something about my health and had a central line inserted for my dialysis treatments. I kept trying to live my normal life, running and working out, but it was too much for my body. I remember hardly being able to walk up 3 flights of stairs without being out of breath before I had my transplant.
My kidney transplant is a living unrelated donor, from my mom’s best friend and our antigen match was very high for 2 unrelated people. My donor is doing very well with her health having only 1 kidney. I have had a few complications following my transplant, include hydronephrosis and a bad infection because the stent in the ureter was blocked. My kidney function is stable after 9 years, with a few health issues here and there, including Melanoma (skin cancer), which is a risk factor associated with taking immunosuppression medication.
Overall, I would not change my decision to have a transplant. Yes, there are risks associated with medications, but for me, those risks outweighed having to live my life attached to a machine.
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