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Inside the Patient Entrepreneur’s Mind: Ira Spector, PhD

Ira Spector Blog

Managing a chronic illness is challenging, whether it is your own or a loved one’s. Starting and running a business also poses unique challenges. If you struggle with a chronic illness, have started a business, or want to start a business, this blog series can help guide you. “Inside the Patient Entrepreneur’s Mind” offers key insights into chronic disease and mission-driven entrepreneurship by some of the most innovative patient entrepreneurs in the world. 

Ira Spector, PhD is CEO & Co-Founder of SFA Therapeutics. He is also a finalist of the 2019 Lyfebulb-Helsinn Innovation Summit & Award in cancer.

As a patient entrepreneur, can you describe your personal experience with cancer and how this experience drove you to innovate the space?

I had two parathyroid tumors removed in 2013 and I was very lucky that they were both caught early and localized. The only problem I had was a sequela of cancer treatment, because there is almost always other damage that occurs. For me, my body was overproducing calcium after cancer treatment so I have calcium deposits in all of my joints as well as my heart valve that required a lot of follow up cardiac care. In my case, I feel lucky that my tumors were caught early. Unfortunately, I have a lot of other personal connections to cancer and other illnesses that resulted differently than my case. My mother and father both had cancer, we lost my father-in-law to colon cancer and my brother-in-law to what we think was glioblastoma. I was also heavily influenced growing up with a seriously ill sibling in terms of guiding me to do what I do now. I’m fairly unique because I am in the drug development industry.  In terms of cancer, specifically, when I found the technology that was the basis for SFA, it was supposed to start as an anti-inflammatory platform. Almost  by happenstance, after looking at the pathways downregulated by this anti-inflammatory platform, I found them to also be oncogenes. When I discovered the downregulating effect of this anti-inflammatory platform on certain oncogenes, I learned that there were other cancers with an inflammatory component that we could go after with this therapy. 

What makes SFA Therapeutics unique and how does it meet an unmet need of the cancer community?

Cancer patients live the rest of their lives looking over their shoulder waiting for the cancer to come back—we think our drugs are the metaphorical umbrella to prevent recurrence. Other than addressing environmental factors like smoking, cancer prevention doesn’t get a lot of attention on the Big Pharma or development side. What we’re saying is wait a second, there are millions of people who have already been treated and now they are just living in fear—what about them! We think we have an approach to reach this community of people. With the exception of certain type of breast cancer, there are very few cancers where other drugs are used to prevent relapse recurrence. At least in terms of CLL and ALL, the path to reduce recurrence comes from this drug we are developing at SFA. We think there is a whole generation of drugs that are very safe and non-chemotoxic to help prevent relapse.

Traditional treatment of cancer has been based on the theory that cancer cells grow more rapidly than normal cells. Agents like chemotherapy or radiation have been used to kill those cells, while also killing healthy cells in the process, to reduce the cancer burden. Our thesis differs in that we believe certain cancers have an inflammatory component and there is a way to control that inflammatory response in the cell. Our drugs are designed to prevent recurrence of tumors by reducing chronic inflammation.

Are there any other unmet needs of the cancer community that you think take priority in working to address? How are patient entrepreneurs well-suited to meet these needs?

Cancer is all too often treated with the ‘let’s just get it out’ mentality and we need a more integrative approach involving the family and disease experience. There are others working on this too, and although we have to be focused with resources, we recognize that there clearly needs to be an integrated approach that improves cancer aftercare. Although we are focused on drug development at SFA, we as Patient Entrepreneurs recognize the general needs of the community are huge. There is a lot of stigma and psychology that could be addressed here. I have a tremendous sensitivity to the broader issues here and I recognize that is also not a very well met need societally. 

Where do you draw your inspiration and motivation from to keep forging ahead as an entrepreneur in the healthcare industry?

Patients. I’m an industry veteran involved in household name drugs. That being said, I get up every morning thinking about patients who haven’t been treated and patients who could’ve been treated by drugs that failed. The inspiration comes from the fact that we are not done and there is still a lot left to do. I know that has become my mantra now in the industry, but it has always been my driver. Getting out of the lab or business setting and going out into the field to talk to physicians, patients, and families—that’s why we are here. Almost everyone who gets into this have personal connections—both of my co-founders have personal connections. It’s just that simple. Pharma and biotech are rated the lowest of the low in public opinion polls, even though most of us who work in this industry are trying to change the world. Despite making a fair amount of progress, we are all vilified based on perceptions about things like costs and the opioid epidemic. We just soldier on regardless of the public opinion in the hopes of changing public understanding of how hard we work to help patients. 

Lastly, what do you do for fun to manage the stress of running a business as both a cancer survivor and an entrepreneur? Do you have any similar advice on work-life-disease management balance to others out there thinking of starting a business to meet an unmet need of a chronic disease patient community?

There are two activities that I engage in. In the summer, we move to the beach so I average 3-4 miles per day walking on the beach. I’m also an active swimmer. However, my other big passion is restoring antique cars. The goal isn’t to finish, but to just decouple by putting on the stereo (I’ve worked on a car for 5 years). On a bad day, if I can’t get anything done on a car because of the calcium deposits in my hands, I walk away and do something else like walk or swim. My advice to other budding patient entrepreneurs is that you need to have activities that totally decouple from what you’re doing and enable you to have a recreation that clears your mind. Do something completely different in order to unplug. You just need to have something, whether it’s music or sports, to decouple from the stress of the day.

Ira Spector Car Restoration

On Letting Go + Self Acceptance While Living With Multiple Sclerosis

The Ideal Self is an idealized version of yourself created out of what you have learned from your life experiences, the demands of society, and what you admire in your role models.

My former ideal self was a smart business owner and writer who had a funny blog and a thriving consulting business. She also wrote a book.

My real self was, and is, a person living with a chronic illness with symptoms that would never allow for any of that to become true. Symptoms like brain fog, racing thoughts, and clinical depression. I’ll get into specifics of each symptom in subsequent posts but here’s the definition of brain fog so you can get an idea.

Brain fog can make a person feel as if the processes of thinking, understanding, and remembering are not working as they should. It can affect their: memory, including the ability to store and recall information.

I clunge so desperately to my vision of what life should be. Of who I should be. Even though I could never be.

I wanted to be like everyone else.

But my brain isn’t like everyone else’s. I kept getting disappointed. And depressed. I remained insecure and I was my own biggest bully. Brain fog made me feel stupid, like a loser, and to me, there was nothing worse I could be. It was unacceptable.

It felt like my mind was a melting pot of chaos. And I wasn’t making it any easier. I was too busy trying to improve myself instead of healing myself.

It was a vicious cycle that was powered by a disturbed mindset. A mindset that said I was the problem. And if I would just change the bad qualities that were bestowed upon me by MS, I would be able to live a happy ideal-self life.

My mind was an unsupervised circus and I attempted to reign myself in with therapy, meditation, medication, spiritual stuff, Instagram quote stuff, religious stuff…ALL THE STUFF. I just wanted to feel better. But mostly, I wanted to achieve whatever goals I set for myself at any given time.

I probably released an ocean’s worth of cortisol during this time because as I’ve said, that is impossible.

CUT TO:

My mind didn’t allow me to let go of my expectations until it was ready.

It was a Thursday in January 2019 when it finally clicked. I was in therapy and verbalizing my racing thoughts. It just came out.

“I am a sick person playing the role of a healthy person.”

I shocked myself, and when the doctored uncharacteristically nodded his head yes, I knew it was time.

Saying it out loud made it real. But also, I had reached a dead end. Each time I tried something new, I did some mental gymnastics and found ways to convince myself this time was different. I wouldn’t fail because (insert skillful justification here.)

This time I tried to become a freelance writer and editor on Upwork. I was chill about the process but quickly learned I’m not capable. The market demands 5000 words for $2 and quick turnaround times. I’m slow like molasses. I realized there was no way I’d be able to deliver quality work consistently.

I gave up one last time. I retired. I was tired, mostly of myself. Things needed to be different. I had a new goal: no new goals. Retirement was about taking it easy. I had spent so much time on my self-help journey so I was already equipped with a mental health tool kit to take me through my days. I also had a new responsibility that was more important: Valentina.

Not trying to live up to an unreachable standard set me free. I felt empowered because I suddenly released the blame. Surrendering made me feel in control. I accepted my lane and no longer felt stupid. I felt like a person who has multiple sclerosis.

I let go and accepted my messy life. I try my best and give myself space when I don’t think it’s good enough. I’m figuring out what I think is good enough. It’s always going to be a journey. For now, I’m buckled in and ready for what’s next. I will certainly keep you posted.

Originally posted on Medium.

New Workout App for People With Diabetes – And Christel is an Instructor!

Have you ever dreamt of working out with a trainer who understands diabetes, who might even live with diabetes, and who gets what it takes to get through a workout without wonky blood sugars?

Well, that trainer could be me!

Today, my 12-week fitness program “STRONGER”, that I developed for GlucoseZone, is available in the GlucoseZone app. I’d like to personally invite you to come train with me. To join me for a program that will push you to be a stronger version of yourself.

Sign up HERE and use the “STRONGER” code to get 30% off your monthly subscription

The beauty of joining GlucoseZone is that you’ll get access to not only my program but to 6 other exercise programs, as well as live workouts, all developed specifically for people living with diabetes. You can do all of the workouts in your own home or bring it to the gym.

Regardless of your fitness level, you can find qualified instructors to take you through the workouts that are right for you, and always with your diabetes in mind.

One of the reasons why I’m so excited about working with GlucoseZone is that it’s the first-ever clinically validated digital exercise therapeutic for people living with diabetes, and it’s endorsed by the American Diabetes Association.

Stronger Getting Started

Sign up HERE and use the “STRONGER” code to get 30% off the monthly retail (You’ll only pay $9.09 per month) when you sign up for the GlucoseZone app.

 

Connect with Christel on Facebook: @DiabetesStrong; Instagram: @diabetesstrong_ig.

To End The Weekend In A Perfect Way

The human body is an incredible thing. Yes, it can fall apart and let you down, but it also holds amazing minds that dream up things like insulin and glucose pills that can save someone’s life and help you work around the parts of your body that can’t keep up anymore.

Weight isn’t everything — health is. I grew up battling an eating disorder and now that my focus is on health, and not weight, I feel much more connected to my body. It’s like meeting an old friend I haven’t talked to in a long time (and we have a lot to catch up on). Having to count, track and balance every bit of food or drink that goes in my body is definitely a trigger for me, but I’m getting to know what food makes my body healthy now.

It’s okay to be sad and let go.

There is no perfect health zone. There will be days when I can’t “beat” diabetes no matter what and there will be days when I need to treat myself and not focus on only eating things I know I can control well. Life needs little moments like that to stay sane and right now, the only path to staying happy I can see is one that embraces ups and downs and doesn’t try to turn them into a perfect straight road.

Last and most importantly: LIFE CHANGES. It is important to remember. Life looks and will not look the same even though we have a disease that will need the same type of treatment.

Working Out With No Obstacles

Hello friends! My name is Judy and I’ve been a T1 diabetic for 18 years now! You may know me from my Instagram account @hyper.hypo and blog/shop (www.diahyperhypo.com), and you may already know how much I love to help other T1s with my experiences and tips. I believe that diabetes should never be a limitation, and with a positive attitude and positive thoughts, it is easier to live with this disease that often feels like riding a rollercoaster.

I know that having T1 can often lead to a lot of questions:  ‘’Should I inject for this’’, ‘’Should I eat now?’, ‘’Should I tell people I’m low and not actually drunk?’’ However, in my opinion, one of the main subjects that us T1s tend to ask questions about is type one diabetes and exercise. A lot of diabuddies think that they need to workout less or not at all because of their numbers, or even limit themselves to a type of exercise but I am telling you with full confidence: THAT IS NOT TRUE!

I believe so much in the affirmation: ‘’Diabetes is not a limitation’’ that I decided to launch my own line of diabetes sportswear.

I decided to create something that will empower a lot of type ones when exercising: a sports bra with an integrated pocket to put the insulin pump (or PDM or supplies or phone, you decide!). I know that working out while having T1 diabetes brings extra responsibilities, so having a pocket that will let you have an intensive and satisfying workout will motivate you to get off your couch and move!

In my case, every time I work out, I feel good. You may think: ‘’Okay Judy that is so cliché!’’ It is, I have to admit it, but it’s the truth! Here are my 3 main tips that help me exercise with type one diabetes:

  1. It’s okay to change your schedule

Be mindful. Accept the fact that you didn’t stick to your workout plan. Accept the fact that you exercised during the evening and not in the morning like you planned to because of your numbers. Once you accept that your schedule might me modified, you will be happier while working out. Things happen!

2. Try to workout with no insulin on board

Working out in the morning works best because there is no insulin in the body (well usually). Sometimes, the blood sugar might spike, so it is important to know your body and to know that a correction might be needed. If there is insulin on board (meaning you injected yourself not so long before), you might need to set a temporary basal rate (if you’re on the pump) or try to inject less insulin before a meal/snack before a workout for next time.

3. Yes, what you eat is important!

Food. Everybody loves food, right? The thing with food is that it can give you instant satisfaction, but might get you lazy if you don’t eat something good for you. Eating a lot of vegetables, fruits and fibers will get you motivated and won’t make you say:

“Ugh yeah I’ll go to the gym tomorrow.” Eating proteins and carbs coming from non-fatty foods will make you feel good, help with your digestion, and affect your numbers before/ after a workout in a beautiful way!

And always remember: Train 30mn a day to avoid being tired 24h a day!

– Judy

Real Talk with Dave: All About the JDRF Type One Nation Summit

Last Sunday, April 22, 2018, I had the amazing opportunity to volunteer at my very first Type 1 event. JDRF hosted their annual Type One Nation Summit in Pasadena as part of the Los Angeles chapter. My goal for this year has been to get more involved in the Diabetic community, so I just knew that I had to reach out and see if I could be a part of this amazing event! I was given the privilege to work with children who also have Type 1 Diabetes, which was such a surreal and eye-opening experience. Also, throughout the day, I was able to meet many new and amazing Diabetics, many of whom I have met through the online community and now was able to meet them in person.

As the day started, I was greeted by some very kind people working the event who helped get me situated and allowed me to find my way around the place. As I walked through the convention center, many different Type 1 brands and companies were there with their very own booths, which allowed us T1Ds to get some more knowledge and have our questions answered. Brands such as Dexcom, Medtronic, OmniPod, Myabetic, and so many others were there with a few very kind reps from each brand. They were all so nice in welcoming quests and helping them find their new favorite T1D brand. I for one was fascinated by the Dexcom booth as they were promoting their latest and greatest device, the Dexcom G6. It was so neat to be able to see the product right then and there as the Dexcom reps were there showing how it works.

As I went to help the children who lived with T1D, I found myself in a room of so many wonderful kids. You would think that these kids would be somewhat down for the fact that they have to live with T1D, but that wasn’t the case at all. The kids I worked with were so happy to be at the event and meet new friends. I would ask them different questions such as how long they have had Type 1 for, what their blood sugars were (and we would compare our numbers with each other), and what devices they use. There was an instant connection with many of the kids as they were so responsive and excited to share. The day went by and they were thrilled to be in this space with each other as they worked on different projects and had different guests come in and talk with them.

Throughout the event, I would go back and forth from the T1D kids to the T1D adults and found myself fascinated with each and every special bond that was formed with one another. I was able to attend a few break-out sessions and listen in on some very interesting panels, some of which I was familiar with the speakers, which made them much more interesting and enjoyable. I must say that whoever put together this event really knew what Diabetes is actually like as they thought of everything to be presented that day. The topics that they talked about were so relatable to people living with Type 1, which made it so special to be a part of. We even got to meet a T1D hero who has been living with Type 1 for 58 years! He was such an inspiration.

As the day went by, more friendships were formed, more amazing T1D brands were discovered with some amazing purposes in the Diabetic community, and all in all, this event was a beautiful space where we could all come together as one big T1D family. Whoever was there was in support of one another and would lift each other up. New people came, but were immediately invited into the group and fit in right away. Many traveled from near and far to be together on this special day for this extra special event, and that right there made me realize how when we stick together as one big T1D family, this disease has nothing on us. We are brave, strong, and true fighters, we won’t give up and we will rise above in times of trouble. Diabetes doesn’t own us.

If you want to get more involved with the T1D community (which I highly recommend, it will definitely change your life for the better), get in contact with your local T1D organizations and be on the lookout for events/meet-ups in your area and just go for it! It just takes one time to get involved and you will be hooked! Being with other Diabetics is contagious and you will want to meet even more Diabetics each time!

 

Live well,

 

Dave

Real Talk With Dave: The Importance of Wearing a Medical ID

Wearing a form of medical ID can be the factor that can potentially save your life. As a Type 1 Diabetic, it is important that we wear some type of medical ID at all times (especially when out alone in public). When we go out into the world and live our lives, we may often times face situations that we might not have control over. Thankfully, we have devices to hopefully help us be in the know at all times with our Diabetes, such as a continuous glucose monitor (CGM), but still, at times, we may experience severe situations with our blood sugars that may result in an emergency.

Without getting too deep into a dark topic (as I am sure we all already know about), I do have to say, there is always a danger, regardless, when it comes to Diabetes. Let’s be real, T1D is considered a “disease” which does have some pretty serious consequences such as really high blood sugars (ending up in DKA) or severe low blood sugars to the point where we may pass out or go into a coma. These are fears none of us want to think about, but somehow, they’re always on our minds. Fear. Something that takes over when diagnosed with T1D. There is nothing to worry about though! We are all on top of our Diabetes and know all the potential risk factors, we just have to be aware and plan ahead.

Where does the role of medical ID come in? Well, say we do experience a medical emergency, if we are alone but are wearing some form of medical ID, such as a bracelet, necklace, ring, tattoo, or ever a simple wallet card, that will help the general public/paramedics know what may have caused the emergency and they can help out as much as possible in saving our lives as they will know what actions they need to take, as essentially, time is everything in an emergency.

I guess you could say that medical ID is more for someone to be able to reference in the case of an emergency. Either way, it will give you the assurance and peace of mind in knowing that you will be taken care of properly in the case of an emergency.

I know that you may not want to wear a medical ID all the time, as it may make you feel “labeled” as a Diabetic, and trust me, I have felt that way at some point in my life, however, so many amazing brands have created casual and modern medical ID jewelry that can go with just about anything on any day. You have to find what your style is and what you feel most comfortable wearing. Once you do so, you will be able to wear your ID wherever you go, feeling confident and safe all the time!

Live your life and don’t let T1D slow you down one bit! All you have to do is take a few simple steps towards your safety as a Diabetic and you will be good to go!

Live well,

 

Dave

 

 

 

Breast Cancer Warrior Thankful for Early Detection

I am a 70-year-old wife, mother, grandmother and university administrator. My cancer journey began October of 2014 with my annual mammogram followed by the mail notice of an abnormality and the ultrasound to check it out.   I was alone in my office when I got the dreaded call from my doctor telling me it was cancer and that I would need to find a surgeon.

After the initial jolt, I picked up the phone, called my husband and made it real by telling him the terrifying news. I tried to minimize the severity by telling him my doctor said it was small, we got it early, and that I likely could get away with a lumpectomy. I have no history of breast cancer in my family.  

Since it was now almost Christmas, I made the decision to tell only immediate family and deal with everything after the Holidays. So we made it through dinners, parties, Santa and all the fun with the diagnosis hanging in the background like Scrooge. And did I say there were tears…..lots of tears.

The first part of January, I saw a surgeon.  He explained that I could have a lumpectomy or a “mastectomy”– the word took my breath away. No one had talked about a mastectomy. He explained with a lumpectomy came radiation and with radiation came difficulties with reconstruction and increased risks of other cancers. Radiation was a must according to the standard of care.  Mind you, this was a very kind qualified doctor doing his job but delivering news that I was not prepared to hear.

I am a take charge person so for the next month, I visited doctors and plastic surgeons, visited with friends and friends of friends who had gone through breast cancer, researched on the internet to the wee hours of the morning, read studies, sent my doctor daughter in Seattle studies to interrupt in the middle of her 80 hour a week residency, drove my husband crazy with the what ifs, and railed against the forces in the universe that brought me to this untenable spot.  

I was having an incredibly hard time accepting that I really did have cancer and that I was going to have to make a decision about how to deal with it.  

When visiting blogs at 2 AM, it became apparent that I was not the only one out there in my predicament. Many women were doing the same thing trying to sift through all the information by themselves and come up with the decision that worked for them.

As I tell this story, keep it mind it is MY story. Not all woman chose to deal with the diagnosis as I did.  There are many types of treatment options and many types of breast cancer.  It is confusing at best and paralyzing at worst.

At the end of all my research, I decided a unilateral mastectomy with reconstruction was best for me given my fear of the side effects of radiation.  So, on March 9th  2014, I had a relatively new nipple and skin sparing mastectomy which leaves the outer part of the breast intact allowing for a good reconstruction outcome.  The pathology report came back with the great news: I had the “best type of cancer” if you must have cancer and would not need radiation or chemo.

The next three months were tougher than I imagined both physically and especially emotionally. June 1st was the reconstruction day and for the short term the end of the physical journey.  Healing has gone well and results are good.  The emotional journey continues, however.  The grief process is one that takes a little more time and doesn’t move in a linear fashion.  You go through the stages of shock, anger, sadness, and acceptance but not necessarily in that order.  I have entered the stage of acceptance– but on any given day anger and sadness can reappear. I know, however, acceptance is where I want and need to be for my continued healing and well- being.  

I am a stronger, more empathic person because of my breast cancer journey and try to be a spokesperson where ever possible to push the importance of mammograms for early detection.  

Medicine has come so far in what can be done both with the surgeries and the drug therapies for women with breast cancer. I pray my daughters and granddaughters will not have to go through what I have. But if you happen to find that you are one of the unlucky one in eight that end up with breast cancer, there are treatments and options and a marvelous life after cancer if you detect it early.

 

Real Talk With Dave: Achieving Your Goals With Diabetes

It has been said over and over again, but you can do what ever you set your mind to! Since the day you were diagnosed, you probably were told by friends, family, and other loved ones that you can still lead a normal life and do what ever you want with Type 1 Diabetes. When I was first diagnosed, I felt like I was at the bottom of a huge boulder that I had to overcome and climb at some point or another just to get to the top. But I was so unsure as to how I could get to the top, all while lugging a heavy weight on my shoulder, my Diabetes. Well, it just so happens that 9 years later (going on 10) I have definitely discovered that it is possible to get to the top and accomplish all the goals I have set for myself. That goes for you as well. Set your goals and dreams, because you are going to achieve them at some point or another, Diabetes or not.

Over the course of my Diabetic journey I have seen so many others who face T1D grow and accomplish so much. Every day there is someone new in the Diabetic community that is going above and beyond in doing what they love, and not slowing down one bit because of their Diabetes. Sure we all get our bad days where Diabetes seems so impossible to beat, but remember, it’s the good days in which we are to make the best out of them and live our purpose. So many people have gone on to do great things- becoming musical artists, doctors, actors, the list goes on- but what makes it so special is that they were able to get to those points in life, all while going through T1D. Was it difficult? Yeah, I’m sure it was. Many non-Diabetics may not realize how difficult it must have been, given their Diabetes, but for those who are aware and know how much Diabetes tends to take out of a person, I’m sure we all applaud them for doing so.

 

The thought of never being able to do many things anymore when first diagnosed is a common thought most people think of while lying in their hospital bed on day 1 of their diagnosis. Little do they know that life is just about to get a whole lot better. More opportunities come from Diabetes. More knowledge, responsibility, and (my favorite) empathy. Knowing the true struggle someone may be facing and being able to relate to the person is one of the coolest things you can have as instantly, you get that person and are able to help each other out. Diabetes also provides friendships, social connections, and a community to be a part of and belong to. Guess you could say we’re some pretty cool people, am I right?!

I do the things that I want to do, because the thought of having to say no to doing an exciting activity because of Diabetes does not sit well with me.

When I want to go out on an adventure, I do stop for a second and think how I will deal with my Diabetes in that event. However, I do the things that I want to do, because the thought of having to say no to doing an exciting activity because of Diabetes does not sit well with me. I don’t ever want Diabetes to determine how much fun I have or what I set out to do in life, socially, academically, etc. All the activities I have done in my Diabetic life, I have done them. Some were more difficult than others, but either way, it was a learning experience in which I was able to gain a whole lot. For me personally, seeing a Diabetic do something so awesome, such as running a marathon, playing a sport for a famous team, or killing the game everyday in a really cool job is so inspiring to see and we all have to keep beating the odds and proving the stereotypes wrong.

So I leave you with this, do what you love and do what you want, because you only get this one life to live, so make the best of it! If you want to be a pro surfer, do it. If you want to be a doctor, do it! If you even want to be the next CEO for one of the biggest companies on earth, DO IT! And show everyone how you did just that at the same time you were managing your Diabetes. Prove those stereotypes wrong and show them who’s boss!

 

Live well,

Dave

The Highs and Lows of Diabetes

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

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

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

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

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

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

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

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

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

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

 

25 Years of Type 1 Diabetes

On Friday 13th, 1992 at the age of 13 I was diagnosed with Type 1 Diabetes.

It was also a historic flood in my town and looking back on the pictures from it, I could clearly see how sick I was. I had all the classics symptoms: thirst, urination, significant weight loss, fatigue and looked gaunt like a ghost. My blood sugar was around 1000, which at that point I had no idea what a dangerous situation I was facing.

Little did I know how much my life would truly change that day due to my diagnosis. Many people would think it would be devastating and this would be a negative thing, but this diagnosis made me who I am today. Don’t get me wrong there have been some high’s and low’s, literally and figuratively, but I always had the thought process that there are two paths you go with this disease. You either let it control you or you control it! I chose to control it and let this be a diagnosis that I would do my absolute best to not let define me.

I just hit my 25 year anniversary living with diabetes and that is something I am extremely proud of. I even got my Eli Lilly 25 year medal! I decided to go into the nursing field after finding out at a young age all the mis-information that was out there, even among medical professionals surrounding diabetes. Then, of course, my next step was to become a Certified Diabetes Educator. After college I became the Nursing Coordinator at Joslin Diabetes camps and then transitioned to a Pediatric Diabetes Nurse educator there as well. I always loved working with children and their families since I felt I truly could relate to what they were all going through. I really think having them see someone that had been living with this disease for so long and was healthy without complications was a really motivating and positive thing for many of them.

After starting a family or my own (6 year old son and 8 year old daughter), I continued as a diabetes educator, but now work with adults and pregnancy patients along with being a lifestyle health and fitness coach.

I was fortunate enough to be a part of the Bionic Pancreas trial in 2015-2016, which gave me such hope for the future for myself and my patients and friends living with this disease. I was told when I was diagnosed that there would be a cure in 10 years and obviously that didn’t happen, so having a device that could make life a little easier and more manageable with diabetes would be outstanding! Living without the constant fear of hyperglycemia, having to count every single carbohydrate you eat, being able to exercise without fear of hypoglycemia would be a true dream come true. Dare I say it….make me feel a little more “normal”.

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