Tag: type 1 diabetes

Inspiring Healthy Living with T1D

Inspiring Healthy Living with T1D

By: Jennifer Levi


I was diagnosed with Type 1 Diabetes when I was 29 years old and 9 weeks pregnant with my son. It rocked my world and I was crushed.

My family is no stranger to Diabetes. My brother and sister BOTH have been Type 1 Diabetics since they were each 7, now 29 and 32. My initial worry was that my son would be in danger. I also started thinking now life is going to be hard. Life is going to be complicated. Life is going to be scary, I’m never going to be able to lose my baby weight, or feel good about my body. It took a little while for my diagnosis to sink in. I let it take control over me. I let it control my emotions. I let it control my limitations. I blamed it for my weakness and poor eating habits.

At 38 weeks pregnant, my son’s heart stopped beating. He had died in utero due to an umbilical cord accident. I searched and searched for answers but Connor was a healthy baby, it was just an accident.

My family and I were devastated but we were determined to have a family. And so a couple months later we found out we were pregnant with our rainbow baby, our daughter. Life without our son is difficult but we were focused on having a successful pregnancy. When she was 17 weeks gestation, we found out she had a fatal birth defect affecting her brain, and she died a week later. Again, this has nothing to do with my diabetes. I can’t even describe the emotions the past year has brought for my family and I.

After my 2nd pregnancy ended in April, I vowed to not let my diagnosis control my life anymore.

I vowed to not live like a victim of my circumstances. And so I started my health journey towards healthy living that has helped improve my mind/body/soul. I’ve lost (and kept off) 35lbs, gained my energy back, and have peace of mind knowing I am not limited because of my diagnosis.

healthy living with t1d

I’ve created a great routine that works for my diabetes that includes healthy, whole food meals, and daily workouts that have helped stabilize my blood sugars throughout my day.

I’ve realized that this is how I want to live for the rest of my life. It has taken some time for me to slow down and realize that my health is my #1 priority. I live for my kids. They are my motivation and inspiration everyday. I rarely suffer from extreme highs and lows that used to play with my emotions throughout the day. Now I control my T1D; my T1D does NOT control me.

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Follow my journey of inspiring healthy living through grief as a Type 1 Diabetic @jbucks2, Jennifer Helen on Facebook!


How My Other Illnesses Helped Me Accept My Type 1

How My Other Illnesses Helped Me Accept My Type 1

Blog: Love, Light, and Insulin


It took me 10 years to truly accept that I have Type 1 Diabetes. I know, that sounds impossible, but it really did. My mom was diagnosed with Type 1 Diabetes at the age of 8. So I grew up in a Type 1 household. Our family didn’t need to be taught fresh. We already lived surrounded by needles, meters, and glucose tabs.

I was 12 when I was diagnosed. Just entering high school.

I have no dramatic diagnosis story because with my mom’s knowledge we actually caught it early. It was a full year until my pancreas completely stopped making insulin.

12 is a strange age. I was just entering high school. I was an awkward tween with braces. I just wanted people to like me, but I didn’t even know who I was yet. So I kind of just pushed my Diabetes to the side. It’s not that I completely ignored it, but I just dealt with it without having any sort of grieving process. I followed along with what my mom did and continued with life, hiding in the bathroom at school to give my insulin, and pretended it wasn’t a big deal.

Then at 20 I was hit with a mystery illness.

I was in school for professional photography and I just felt awful every day. My legs started to feel like lead when I walked. The trek from my suburb to school downtown began to feel nearly impossible. I developed a wide gait and walking, something that used to be so natural, became difficult. That was the last time I was in school. At this point I had been to my doctor and she had asked me if I was depressed… if my Diabetes was under control… if I was exercising, because all my tests were coming back normal.

Next came scarier and stranger issues. I had stroke-like episodes. I started going into urinary retention. My gastrointestinal problems that I’d always had became more severe. I was lightheaded and nauseous standing up. It just felt like my body was falling apart.

And it was a uphill battle to get doctors to believe me and take me seriously. In the meantime, I was not well at all, and the realization hit me that having Type 1 wasn’t no big deal. It hit me that this disease was just as important, and just as scary and serious as all these other issues I was dealing with. It was a big deal and a complete full time job. One that I couldn’t forget to do when I wasn’t feeling well. One that I had to keep in good control to prove to my doctors that I was a compliant patient. One that was even harder to care for than some of my other issues.

So while I didn’t know what was wrong with me in every other way… I knew I had Type 1 Diabetes.

This is when I started venturing into the Diabetes Online Community. Talking to all these people who got it was such a miracle for me. From there, I found the whole chronic illness community, and both of them together helped to get me through all the years of the unknown. I found others who had both Type 1 and other unrelated illnesses. I wasn’t alone and I wasn’t the only one going through all this.

And then some tests started to come back positive. Through urodynamics I was diagnosed with Bladder Sphincter Dyssynergia, a form of Neurogenic Bladder. Through a Sitz Marker study I was diagnosed with slow intestinal motility. Through a tilt table test I was diagnosed with Postural Orthostatic Tachycardia Syndrome, or POTS for short.

But my walking and balance problems were still a mystery. I had about 4 neurologists tell me I had conversion disorder but kept fighting, because I knew that wasn’t right. There so many tears shed after appointments, so many let downs. So many medical professionals who just didn’t take me seriously. Until this year.

My neurologist (one who had previously thought I had conversion disorder), called and asked me to come in and discuss some results. She told me that she thinks I have Stiff Person Syndrome, a literal one in a million disease, and started me on treatment. Stiff Person Syndrome is a rare neurological autoimmune disease that you can probably guess from the name, causes progressive stiffness and muscle spasms. So I don’t know what my future holds. I don’t know how much worse things could get or how quickly.

So right now I’m trying to live out my life the best I can with a disability.

I’m trying to go out of my comfort zone and go on adventures. And now, I can take a step back from this 5 year search for answers and breathe the biggest sigh of relief. Because although having a debilitating, progressive illness is no fun, I would rather know than not know.

Fun fact: Though Stiff Person Syndrome is thought to occur in fewer than one million people, 60% of people who do have Stiff Person Syndrome have Type 1 Diabetes.

And if I had any advice, it would be that you know your body best. Be your own advocate. Let your voice be heard and let it be strong. Don’t let the sounds from others get in the way. You are always stronger than you think you are.


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What It’s Like To Live With Type 1 Diabetes

What It’s Like To Live With Type 1 Diabetes

By: Valeria Guerrero

What’s it like?

It’s pricking your finger endlessly throughout the day.

It’s not being afraid of blood because you get used to seeing so much of it.

It’s no longer feeling tremor to a needle because you’ve had no choice than to be poked by them every day.

It’s being woken up countless times throughout the night to fix blood sugars that just won’t become stable.

It’s waking up feeling hung over because your sugars were high all night no matter the amount of corrections you gave yourself.

It’s not being able to eat whatever you want before carb counting and analyzing how it will affect your sugars later.

It’s having to put on a fake smile every time you have to explain to someone that type 1 and type 2 diabetes are NOT the same thing.

It’s not being able to go a single work out without stressing if you’re going to go too low, drop too fast or go high.

It’s seeing all the scars all over our tummy, arms and legs from all the site changes and pokes and just cry.

It’s people staring at you while you poke yourself and watching you like something is wrong with you.

It’s people telling you “you can’ t have that” or “should you be eating that?”

It’s people assuming you have type 2 when you say you have diabetes.

It’s watching people look at you like you’re breaking the law by having a candy.

It’s asking yourself what you did wrong because you got this disease even when they say it isn’t your fault.

It’s remembering what it was like before being diagnosed and feeling nostalgic.

It’s struggling with money and possibly going into debt because supplies are just so expensive.

Photo Credit: Josie Nicole

It’s wanting to cry whenever you hear a representative say “your insurance doesn’t cover that entirely so your out of pocket cost will be…”

It’s seeing a medical bill in the mail and getting a knot in your throat.

It’s thinking of all the money you could’ve had if you didn’t have diabetes.

It’s watching people turn their head away when you’re about to poke your finger or give yourself a shot.

It’s watching your mom walk out of the hospital room because she wasn’t able to handle watching you give yourself your first shot.

It’s worrying if you will wake up the next day because you don’t know how your sugars will be throughout the night.

It’s being terrified to think about even having babies in the future because you’re terrified there might be complications.

It’s feeling lost and in a haze when you’re going low.

It’s panicking that you don’t have a juice box around that you’re dropping too fast.

It’s waking up in the middle of the night dripping in sweat as your body is begging for sugar.

Photo Credit: Ashlyn M.

It’s not being able to go straight back to sleep after a low because you have to wait until you come back up.

It’s eating anything and everything in your fridge when you have a low sugar.

It’s avoiding anyone who is sick because you don’t want to get sick and have to deal with high blood sugars.

It’s the possibility of ending up in the hospital over a stupid cold.

It’s finding test strips everywhere you could possibly think of.

It’s looking like robotron with so many devices connected to you (CGM, pump).

It’s your pump tubing getting caught on something and tearing out and trying not to scream in pain while trying to stop the bleeding.

It’s having people ask you and assume that your CGM is a nicotine patch.

It’s people telling you to correct your blood sugars over and over when little do they know that you’ve been trying everything you could for hours.

It’s having to go to the doctor every 3 months.

It’s having to have medical insurance no matter what.

It’s having to throw out a vial of insulin that has gone bad and just thinking about the money that you just threw away.

It’s ensuring you have all your supplies anytime you plan to leave the house.

It’s the fear that it’s too much for a loved one to handle and love you for.

It’s wanting and praying that your mom will eventually try to learn more about the disease so she understands you a little bit better.

It’s wanting your loved ones to know how you feel to know how hard it is; that this isn’t easy but knowing they don’t.

It’s being in denial for years after being diagnosed because you don’t want to accept it.

It’s worrying more if you have enough money for your supplies more than buying a shirt you’ve been wanting for months.

It’s having to always have a purse with you because you have to carry your supplies with you. It’s hating the word “disability” because it makes you feel less of a person.

It’s the feeling that no one gets you because everything you feel is invisible.

It’s arguing with your dad and having to yell at him that your sugars are high and that it only makes you more irritable.

It’s arguing with your boyfriend over the stupidest things because your blood sugars are high.

 

It’s your friends getting upset with you because you tell them you can’t go out for some reason, but in reality diabetes just has you feeling like shit.

It’s putting up listening to people who think they know more than you on this disease.

It’s having to be okay with death because in reality, it’s a possibility at any given time with this disease.

It’s seeing all the people who pass away from this disease and feeling your heart drop to your stomach because you know that could be you.

It’s having people tell you “there will be a cure soon” but you just feel like soon is never soon enough.

It’s not worse than cancer but this stays with you forever.

It’s not something I would ever wish on my worst enemy.

It’s hard. Man, does it get hard.

It isn’t easy. There’s so much more to it. More than anyone could see or understand. I could go on forever. There are and have been so many times where I want to give up. Where I just want to go a day or two without the pokes. To try and feel “normal” again.

But I know I can’t. I know better. Because my life depends on it. But it has shaped me into who I am today. I thank God every day because I could’ve been one of the many children who die from a misdiagnosis. I was close to it. But I didn’t. I believe and I know I am stronger than what people believe me to be.

I have gone through hell and back. There will be rainy days. But the sun will always shine again. No matter how hard the rain may have beat down on me. But I won’t let diabetes win. 

What It's Like Living With Type 1 Diabetes

 

“With my chin up, I still stand here. Strong. I wear these scars proudly. I’m a warrior. No blood sugar nor person will tell me otherwise.”

-Valeria Guerrero, Type 1 Diabetic


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Diabetes Has Become My Passion In Life

Diabetes Has Become My Passion In Life

Diabetes Has Become My Passion In Life

By: Austin Fuerst

At the age of two, I was diagnosed with type one diabetes. This didn’t just mean that my life would change, but the lives of my parents, family, and friends as well. As a two-year-old, I clearly didn’t know what was going on so all the credit goes to my parents for taking care of me. My mom and dad were always wonderful with taking care of my diabetes and making sure everything was done correctly, from insulin injections, to counting my carbs.

Needless to say, I was very fortunate. My parents also taught me early on to be independent at a young age, starting off giving myself insulin injections when I turned four-years-old, and counting carbs when I turned six-years old. My parents also taught me to not hide, or to be ashamed of my diabetes. They refused to take me to the bathroom of a restaurant to take an insulin shot, and before every school year, they would have a class meeting with all the other kids and let me explain my diabetes to them; the lows, the highs, and how it all worked. That’s where my love of education comes from. My parents helped ingrain it in me at a very early age.

As I got older, diabetes became more and more of something that was a nuisance to me, with middle school being the worst stage of it. I went into the sixth grade with a new insulin pump; the Deltec Cozmo for those who remember it. It was honestly one of the best pumps I have ever had. The only problem with it was that as a sixth grader, I didn’t have the maturity to us it as it was intended.  I would bolus without checking my sugars or without even counting my carbs. This led to me lying to my parents about what my numbers were. Telling them that they were a perfect 120, when in reality it was upwards of 300.  I could only get away with that for so long because of the dreaded endocrinologist. You smile your way through that because, well, the numbers don’t lie.

When my A1c results came back I was honestly scared for my life. It came back at a 14. I was afraid my parents would be furious at me, and I was right. They weren’t furious at me for having a bad A1c, but they were angry because I had been lying to them about my numbers. That was a big wake up call for me. I realized that the number, whether good or bad, was vital and helped steer me on the path that I needed to be on. After the endocrinologist appointment, I took a break from the pump and went back on shots to bring my A1c down, and get my diabetes back under control.

Through all this time, I attended a summer camp called Camp Sweeney, which is a summer camp specifically for type one diabetics. When I was younger, I loved going just because it was fun. It wasn’t until I reached high school that I realized what the camp was all about. Sure it was fun, but they really opened my eyes to what my diabetes really was. Diabetes was a blessing and something that grew more and more to be a burning passion in my heart.

At Camp Sweeney, they taught us how to take care of ourselves in the “real world”, what was going on inside our bodies, and helped us understand what diabetes really is. They helped spark my dormant love for diabetes education. As I went through high school I became more involved and helped in programs where I was able to go to Children’s Hospital in Dallas, TX. At the hospital, I could talk to newly diagnosed families and their children about diabetes, encourage and give them hope that their life isn’t over- it just got a little more complicated.

I have always been a very active person. Up until my freshman year of college, playing lacrosse was a huge part of my life. Over the last 2 years, my passion has switched to personal fitness and working out . Throughout high school my blood sugars and A1c were always “ok”. It wasn’t until I started getting into fitness, working out and eating right that my blood sugars decided to be amazing! After about two years of working hard, eating right and working out five to seven days a week, my most recent A1c was the lowest it has been in the 19 years that I have had diabetes. My A1c was 6.5 and I couldn’t be happier with it!

Through my fitness endeavors, I felt compelled to find a way to help encourage other T1d’s that diabetes shouldn’t stop them from doing what they love and their passion. No matter if its fitness related or not. That’s when I came up with the idea of Everyday_T1d. My goal is to spread awareness, help T1d’s become more confident, and help them realize that diabetes doesn’t have to control their lives but just be kept on a leash. Diabetes can be a blessing rather than a burden, it’s all a matter of perspective.

Through all of my experiences with diabetes, it took me a while to figure out what I wanted to do with my life. My passion started with music, then it was marketing, and it took me so long to figure out that it was in front of my nose the entire time. Diabetes. It makes perfect sense to do something I’m so passionate about as my career.  I’m currently going to school to receive a nutrition degree with hopes of being a registered dietician and one day, a diabetes educator. Now that I know my path, I am ecstatic to get there. To turn my passion and dream into reality. Diabetes has and always will be a part of me, and I am so blessed to have it in my life.


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my silver lining

The Silver Lining of Living With Diabetes

The Silver Lining of Living With Diabetes

Having this disease for so long I’ve noticed that I’ve grown accustomed to this “normal”. Being told “you have it good, at least it’s not cancer” and that pains me because I often feel like my struggle doesn’t matter. I then question my attitude towards this disease, whether I’m capable, whether I’m just ungrateful.

But in all honestly, this disease is hard. Not once in awhile… But. Every. Single. Day. Nowadays I just feel like I’m on autopilot. I’m not one to sit in sorrow. I know there’s many who have it far worse. I’m blessed to be typing this and sharing my story with the world. But for not one moment will I forget the horror I have witnessed. The nightmares I’ve experienced that were actually real. I’ve been in lows so deep that if you would have pinched me, I wouldn’t have felt it. Highs were I was in DKA and my body was depleted and fighting to gain energy.

Every experience, every nightmare, every close call has taught me a lot about myself. I’ve grown stronger than I could have ever imagined. I enjoy the simple things in life. I appreciate the devices and insulin that keeps me alive. I thank god every morning I wake up, and get the opportunity to be around my family. Some may think that seems awfully dramatic. “It’s a manageable disease…” Yes, it’s manageable but any minor slip up and it can be catastrophic. I walk a fine line everyday. I respect diabetes. I hate it, but I’ve learned to take control over it and not let it control me. And to never take life for granted.

At this point in my life, I know I could go on and live happy and manage this disease as best as I can, and not really speak about it. But I’m tired. And I know others are tired too. When you put years of sleepless nights, no days off, the rollercoaster ride all rolled into one, it takes a toll. I can put my happy face on and pretend everything’s okay, but there’s going to be days when things aren’t exactly okay, and that fight will never end until there’s a cure.

Some days it does feel like it’s all too much. Like I’m a hamster on a wheel. Wondering where the finish line is. So that I can finally let all my worries escape me. I’ll admit the internal scars of this disease has shaped me. I don’t know who I would be if I didn’t have diabetes. Sometimes I think I even feed off of it. It keeps me grounded. It’s given me the utmost compassion and empathy for others. I’ve endured the worst but I’ve also experienced the absolute best in this life.. and even more so to come. And with this journey, while immensely chaotic, it is my silver lining.

“We are the silver lining in any and every dark cloud we could ever find. There is no need to go looking for the light when you bring it with you.” —Tyler Knott Gregson


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misdiagnosed with type 2 diabetes

How I Was Misdiagnosed with Type 2 Diabetes In My 40’s

How I Was Misdiagnosed with Type 2 Diabetes In My 40’s

Written By: Erin Clausen

In my 42 years leading up to my Type 1 diabetes diagnosis, I’d never been the type of person to get sick much at all. An occasional cold every couple of years. Maybe a quick 24-hour flu a couple of times in my entire life. My immune system always seemed to function incredibly well. Better than most I’d always thought.

Eight months before my diagnosis, I had the flu. It was the most awful three days. I couldn’t keep anything down. My bones ached miserably. A seemingly inescapable relentless aching that made me want to scream. I could do nothing but hope to sleep in between diarrhea, vomiting, and dry heaves.

In the months that followed that horrible flu. I noticed I wasn’t feeling up to par. I started having to use the bathroom in the middle if the night. Where before, I almost never got up to pee during the night. It soon became two to three times a night. I also noticed that I was often very thirsty. I would wake up every couple of hours and drink from the 32-ounce glass of water on my nightstand.

I even started to run out halfway through the night and needed to refill my cup. Then the frequent urination became five to six times a night. The conversations I’d have in my mind every time I’d wake up needing to pee went like this. “Dammit Erin, stop drinking so much water and you won’t have to pee so much!” or “I wonder if I should see my doctor about overactive bladder issues?”

I had also been losing weight easily. I chalked it up to the fact that I was a massage therapist and I expended a ton of energy during the day working on clients. I even wore a fitness activity/calorie burn monitor. It confirmed that I was burning a lot of calories. In hindsight, my job and level of activity probably saved me from super high blood sugars and DKA. I had been exercising my blood sugar down every day.

When I finally had enough of the frequent bathroom trips, thirst, and shear exhaustion I decided to get in with my doctor’s office. I saw a female Physician’s Assistant at that time. I loved her. She listened to my complaints and said:

“It sounds like diabetes.”WHAT?? Diabetes never even entered my mind. “But I’m the healthiest person! I’m the low carb, broccoli, quinoa, nutrition peddling queen!”, I said. “I’ve never really had bad blood glucose tests in my life!  She replied, “well, let us just run a bunch of tests and see what comes back.” She ran tests for thyroid, blood glucose, cancer, etc, etc…

misdiagnosed with type 2 diabetes

A few days later, there was a voicemail on my home phone when I’d returned home from work. “Erin. I need you to come by my office tomorrow. You don’t need an appointment, just come by. One of your tests came back with some distressing results.” OH, MY GOODNESS! I just knew it was something bad, like cancer. Still, not even thinking how I could possibly have diabetes.

I got to her office the following day and was quickly taken back to an exam room. She entered the room and greeted me. She immediately got to the point. “Erin, you’re diabetic. Your fasting blood sugar was 356.” I was instantly stunned. “But how did this happen?” I’ve always been so healthy!” She and the physician she worked under assumed and misdiagnosed me with Type 2 (because of my age) and sent me home with a prescription for Metformin. She was sent a referral to the Endocrinologist. Our small town doesn’t have any Endocrinologists. The closest one is 90 miles away. She told me they should be calling me soon to schedule an appointment.

It was Friday—I went back to my work and tried to get my mind on something other than the terrible news I’d just gotten. I worked until 5 pm, went to dinner with my husband and told him the details of my day. When I arrived home that night, there was a voicemail from the Endocrinology office wanting to schedule my appointment. Shoot!! I missed the call. Now I’ll have to wait until Monday to call them back.

After some brief reading online about blood sugar ranges, and quickly learning that a BG in the 350 range was not good at all, and I should probably be on insulin.

The next day, I was afraid to eat anything with carbs for fear that my blood sugars would go even higher. My breakfast consisted of string cheese and almonds. I also started my own research into diabetes. Type 2, just made no sense at all to me. Generally, I had always thought Type 2 was gradual in its onset of increasing blood sugar levels. My diabetes just came almost out of nowhere!

My limited knowledge of Type 1 or Type 2, was that Type 1 was the juvenile type, and the “bad” kind that you were born with or happened or in your childhood and you needed insulin to survive. And Type 2 was what adults got… What “grandma” got. Although no one in my family had Type 1 or Type 2, even grandma… I quickly stumbled across information on other types I never even knew existed. Like Type 1.5 LADA. “THIS!!! This makes more sense! This is probably what I have!”, I said out loud.

Sunday mid-afternoon, still on my string cheese and almonds meal plan, I found a Facebook group on 1.5 LADA and started talking with people. I explained my situation about my diagnosis of Type 2. The people in the group asked if my doctor had given me a blood glucose meter or if I had tested my urine for ketones. I explained that I hadn’t been given a meter and I didn’t know how to test for ketones. After a couple of them urged me to go get a meter, and ketone test strips, my husband jumped in the car and headed to the drugstore to purchase the items I needed.

It was early evening now. The people on the group walked me through how to use my meter and how to test my ketones. The color on the ketone strip was dark. Not the darkest color on the strip but it was the dark pinkish purple block right below it. Took a picture of the strip and posted it in the comments on the group thread. I also posted that my blood sugar was still 350, and I hadn’t eaten hardly anything except a couple handfuls of almonds and string cheese. They all kept commenting, “GO TO THE EMERGENCY ROOM!” So off we went!

The small-town hospital ER where I live took me back to a private room in the ER department. They tested my urine and blood sugar. Not in DKA. But they gave me a shot of 4 units of fast-acting insulin to start out, put me on an IV for fluids and monitored me with multiple finger sticks over the next few hours. They gave me 2 more units and then sent me home around 2 a.m., once they decided my blood sugar was within normal range and my ketones were down.

At 7 a.m. the next morning, Monday morning, I had to leave on the 90-mile drive for a routine appointment I had with the spine surgeon. I had some neck issues due to my job that would most likely result in a surgical fusion at some point. I felt like death warmed over when I woke up. I tested my blood sugar. It was 120. That’s okay. So, why did I feel so hungover??

I decided to leave earlier than necessary for my 12 p.m. spine doctor’s appointment and thought I’d take a chance on calling and possibly getting in to see the Endocrinologist that day. I felt so nauseous and I couldn’t stomach anything to eat. I drove with a bowl on the passenger side at the ready should the urge to vomit arise. I pulled over at 9 a.m., at the halfway point in my journey.

I called the Endocrinologist office. Told them who I was, that I went to the ER the night before, that I had another doctor appointment across the street from their office at noon, but I could be there as early as 10:15 or anytime after 1 p.m. in case the doctor could see me or if he got any cancellations. The receptionist put me on hold so she could talk to the doctor. She came back on and said the doctor could see me if I could be there at 10:15. “I’ll be there!”, I said. And I was back on the road.

I arrived at the Endo’s office. Still looking and feeling horrible. I was shown into his private office. Awards for Excellence in Endocrinology were everywhere. A reassuring sign! A tall, slim gentlemen in his 70s entered the room and introduced himself as Dr. Atcheson. He asked me many questions, then asked if he could do an examination in his patient room next door. I was shown there by his assistant. She tested my blood sugar at that point. It had already climbed to 210, without me having eaten anything that morning.

After his examination. He said, “Well young lady. I’d be very surprised to find that you’re Type 2. I’m 90% certain you have Type 1 diabetes. But I’m going to send you to the lab for a couple more blood tests….” “But I thought mostly babies and children got Type 1, I said. He told me that about a quarter of all Type 1’s were diagnosed after the age of 25. Many are diagnosed in their 40s and 50s.

Misdiagnosed with type 2 diabetes

Then he brought his assistant back in to show me how to use insulin pens. Told me to go get my blood work done, then have a sensible lunch, and give myself 3 units of fast-acting insulin and he’d be calling me frequently the next few days. I went to my next doctor appointment. Then, still not feeling up to eating, I pulled into a convenience store. There I found my staple sustenance, string cheese, and almonds. I pulled around to the back parking lot and injected my first self-administered shot of insulin. I thought to myself, “Is this really happening?” I proceeded to cry my eyes out for a few minutes. Then I was back on the highway toward home.

The next day, Dr. Atcheson called me with the additional test results. I was definitely Type 1, not Type 2. Ironically it was April Fool’s Day. I guess I can never forget my D-Day! The week and a half that followed, that 70-year-old doctor, called me four times a day. At 9.a.m., then at noon or 1 p.m., then around 5-6 p.m., then again around 9 p.m. He’d ask me what my blood sugar reading was, what I had eaten, told me how to calculate my fast-acting insulin to cover the carbohydrate in my meals, told me how much long-actings insulin to give myself at night and made adjustments for my dosages as needed. Judging from the caller ID, he always called from his office.

After a week and a half, he said he felt I had a good enough grasp on carbohydrate counting and administering my insulin and he didn’t need to continue calling. He then set me up for an appointment with a diabetic nutritionist to make sure I was proficient at carb counting. He also recommended I consider a Dexcom Continuous Glucose Monitor and an insulin pump in the future. I later found out he didn’t usually deal with diabetic patients in his practice anymore. I was switched to the other endocrinologist/diabetes specialist in the office for my continued visits. As it happened, that doctor was on vacation when I was diagnosed.

I feel very fortunate to have been diagnosed quickly and without being admitted into the hospital for a week due to DKA. It could’ve been so much worse. Life is in my mid-40s is so very different. I’m on a continuous glucose monitor and an insulin pump. Doing well. Many would say I do so well, it seems effortless. It’s not nearly as effortless as I make it appear to everyone around me.

Not an hour goes by without thinking about, treating, dosing and planning my day around diabetes. I’m approaching my three-year Diaversary this April Fool’s Day, 2017. I haven’t celebrated my last couple of Diaversaries, but think I’ll celebrate this year, and maybe even have the cake. Just a little extra insulin added to my celebration of being alive.


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The Tribe Of The Unglamorous Heroes

The Tribe Of The Unglamorous Heroes Of The Night

The Tribe Of The Unglamorous Heroes Of The Night

– Written by Michellè Dreeckmeier

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Last night I probably saved our daughter’s life.

It was not the first time I had done that.

And neither would it be the last.

Do you want to know what it feels like being dubbed a so-called ‘life saver hero’?

I’ll tell ya. It feels (unglamorously) TIRED.

My ‘heroic act’ – if you want to call it that – comes wrapped in a frenetic package made up of a malfunctioning organ, erratic sleeping patterns, math, carbohydrates, pajamas, insulin, alarm clocks, blood sugars, quiet wee hours of the night, a bad case of bed hair, worry, the promise of a manifesting head-ache the following morning and a young brave person who is inestimably loved.

I am the mother of a daughter who has a chronic, life-threatening, high maintenance, autoimmune disease for which there is no cure…yet. Without any warning our daughter’s body turned on itself and killed off almost all of the insulin producing beta cells in her pancreas. The result: erratic blood sugars which (drama alert) could potentially take her life without much notice. It was two years ago when we received this diagnosis which we wish weren’t: our 11 year old daughter was diagnosed with Type 1 Diabetes. In that single moment our lives changed forever.

Since that day our daughter has been called:

BRAVE.

COURAGEOUS.

A HERO.

A WARRIOR.

I too use these words when referring to my daughter. Because in my eyes she certainly is all of these things – as is every person living with Type 1 Diabetes.

Each day my husband and I act mostly as standbys – we offer our support wherever and whenever she requires or might need it. Our daughter prefers to manage this complicated autoimmune disease mostly on her own. She’s been like this forever. Independant. Self-reliant. Responsible. Conscientious. She is so (wait for it) BRAVE and COURAGEOUS.

At nighttimes, when she sleeps, we take over and monitor her blood sugars and keep her safe. She needs her rest and we are thankful to do this for her. And since a (much desired!) continues glucose monitor is not covered by our health insurance we get to be on ‘night time pancreas duty’ every single night.

My husband and I have been dubbed brave and courageous heroes as well. Yet, owning these words does not seem real and neither do we feel worthy to be even called that. Let me be clear, my picture of a hero most certainly does not match the tired individual with weary eyes who stares back at me in the mirror in the morning after one of those D-nights. None of our family pursue or aspire to the title of courageous, brave hero. We just do what we have to do to keep our daughter safe and alive.

What we do chase after, however,

is LIFE,

and the HOPE for a cure.

D-life is not about titles and labels and feeling brave and courageous and parading around like hailed surviving heroes. There certainly is no time for that! And even though I myself call my daughter a brave and courageous hero I am very aware that she more often than not does not feel like she is any of those things. In the end it comes down to LIFE and living it to the fullest, and enjoying what life offers us in the gift of FAMILY, the gift of TODAY, the gift of NOW.

Like me sitting here, in the NOW, typing these words while drinking a big mug of strong caffeine laden coffee. Because I am a D-mom. Who slept little last night and now own a pounding headache but, thank GOD, did caught an awful episode of hypoglycemia just in time before things got really ugly last night. This cup of coffee may as well be a glass of champagne. Because despite me losing hours of sleep each month thanks to Type 1 Diabetes I am so very thankful that I did caught last night’s unforeseen and unexpected hypo since I almost opted to not check her blood glucose during that specific time slot. I prefer to not ponder any further on the ‘what if I didn’t’ scenarios pertaining last night.

Right now, for a brief moment, I will silently acknowledge the following to myself: Last night I probably saved my daughter’s life. I fought Type 1 Diabetes and I won that round. And because of that my daughter woke up this morning and I am now the proud owner of war scars in the form of exhaustion which will last for the remain of this day. But thanks to the gift of coffee and GOD I will prevail.

During nights like last night I often like to remind myself that I’m not alone. Somewhere in the quiet of the night there are other parents who also fight for their child’s life, sustains them and help keep them alive and safe.

It might be a different disease or a disability or another condition but ultimately we are fighting the same fight.

And to that I raise my big coffee mug and declare:

Here is to us, the tribe of the unglamorous, reluctant heroes of the night who fight battles of life and death in our pajamas.


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We Are Not Letting Diabetes Win Anymore

We Are Not Letting Diabetes Win Anymore

We Are Not Letting Diabetes Win Anymore

By: Jodi Otis

10 years ago our lives were forever changed when my then 6-year-old son, Bailey, was diagnosed as a Type 1 Diabetic. I will never forget the day his beautiful brown eyes looked at me as he uttered the words….”Mom, am I going to die?

I swear my heart stopped for that moment in time. I saw his life flash before me in just a matter of seconds. The tears softly rolled down my cheeks as I promised him he was going to be OK, that no matter what, he was going to feel better soon.

Before we knew it we were off to Children’s Hospital where his blood sugar was almost 800 and he had large ketones but was not in DKA. We spent the night and as many T1D parents do—you admire them as they sleep. As I sat in the darkness and silence the tears fell like rain.

And I prayed—I prayed for him to find peace and the strength to handle this. He was six, 6. He should be worrying about if he was going to jump in mud puddles or ride his bike not what his blood sugar is. I knew we had a long road ahead of us.

The next two days we had training so we could take our child home with us and be experts in diabetes. I should have known he would have had the most amazing courage, he took the poker and meter from the nurse and tested his sugar all by himself. He really has no fear of anything!

4 years later, when he was just 10, his 14-year-old sister, Bree, wasn’t feeling well and he could see the telltale signs and he told her to take his meter and check her sugar and if my heart did not stop again….her blood sugar was almost 300.

I couldn’t help but feel anger—not towards her but for her. Anger that she will have to struggle for the rest of her life after seeing him go into DKA twice and be hospitalized. After seeing him have high blood sugars and low blood sugars and feel awful. After seeing him get sick with the slightest cold or virus sometimes. Seeing him have to adjust….EVERY…SINGLE… THING…HE…DOES….TO ….SURVIVE.

I knew she would have a hard time, she is such a picky eater and not a good sleeper, meaning she can sleep for 12 hours at a time, crazy teenagers! She went through a period of depression and I felt her slipping through my fingers and she used her diabetes as a weapon.

I was heartbroken and angry for so long, I felt like diabetes had won, it had taken over my family and my life. Until we decided that we are not just surviving anymore. We are not going to let diabetes win anymore. She had to find the courage to come out on the other side of depression, not an easy thing to do.

Bree has an amazing spirit. Her smile lights up the world. Bailey has the strength of a million men. His courage is far beyond words. Both Bree and Bailey have raced Motocross for several years. It is mentally and physically demanding. Diabetes could have robbed them from a sport they love but they never gave in or gave up. They are my heroes, they are my true warriors. We choose how we live each day, you, me, we choose. Not the disease.

Every day that we fight, we win.


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manageable disease

Trying To Manage a So-Called Manageable Disease

Trying To Manage a So-Called “Manageable Disease”

By: Amy Waddington

“It’s a manageable disease”. Yes, it’s manageable…but it’s also ugly, hard, and exhausting. From the time he wakes up till the time he goes to bed we think about diabetes, what we’re going to eat, when did he eat last, what are his numbers, why does he look so tired and worn out.

Oh nooo, I hope he isn’t getting sick. Navigating through high & low blood sugar throughout the day is SO much more then the number. It effects his concentration, vision, causes fatigue, makes him irritable, and have daily flu like symptoms, as his blood sugar fluctuates.

Every single day he battles and our days are full with “managing the disease”.

Like the moment I suddenly realize I haven’t heard from my son for a couple hours and I’m 45 minutes away. So I check the app on my phone that gives me a peek at his blood sugar and there is no reading.

Not only is there no reading but there hasn’t been one for hours. How terrible of me to not catch this sooner. I desperately try calling him. But he’s not answering his phone, and I’m unable to get a hold of him.

The panic sets in…”is he ok?!?!” Is he passed out needing me to come to his rescue????” That’s the thoughts that go through my head.

I call every single neighbor until one finally answers and graciously runs to the house to check on him, all while he is swimming in the backyard with his dogs.

Then there’s having to watch my teenage son turn away food because he wants to maintain his current blood sugar. He’ll sneak treats because all he wants is a piece of candy or a bag of chips. But knows he shouldn’t have it because at the moment he is “too high” and although he craves it, he can’t have it. It’s heartbreaking.

We’ll be enjoying a day at a Theme Park and my son will be under a shade tree because he is down with low blood sugar from all the activity. And now he needs to eat some more, rest and wait for it to go back up again. So he can get his color and life back in him and maybe enjoy a few more hours of fun he desperately needs.

Then there’s me sleeping with one eye open. Constantly peeking at my phone to reading his blood sugar because caring for a child with type 1 diabetes is 24 hours a day and 7 days a week. There are no breaks or end to my worry. So yes, “it’s a manageable disease”, but please don’t tell me that because we already know. We manage it every single minute of every single day.

My heart behind sharing about Ashton’s Type 1 Diabetes is to educate people about the disease.

My hope is that we would continue to be transparent and authentic while spreading as much awareness as we possibly can. If you know of anyone living with a chronic disease give them some extra grace maybe even take a few minutes to give a high five, thumbs up or take the time to encourage them.


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A Heartbreak Like No Other

It’s a Heartbreak Like No Other

By: Jessica Hale

It’s a moment of heartbreak unlike any other I have ever experienced in my life. That moment that you realize that your 2-year-old child gets it. She knows that you’re different and your lifestyle is different than any other person she interacts with. She’s 2 years old and she understands as selfishly as this may sound; that I have medical needs that sometimes require me to put myself before the wants and sometimes needs of my own child. That alone rips me to pieces inside.

But the moment you realize that your child gets the fact that there is something not right with you and she tries to help. Everything that you’re supposed to stand for as a parent seems to be ripped out from under your feet, you are the protector, the comforter, the nurturer. But when that role gets flipped and you’re staring up at your 2-year-old who’s trying to help you with your low blood sugarit’s a heartbreak like no other.

A Heartbreak Like No Other

I was in the middle of getting Chey ready for bed and out of nowhere I’m too weak to stand or walk. So I have to crawl my way to the fridge and sit there in front of it trying to stay coherent and not nod out of consciousness before the sugar has time to hit my system. While doing that I didn’t notice that Chey had moved a box over to the cabinet to where she could step on it and reach on top of the counter to grab my sugar kit. She brings it to me and says “here is your ouch momma” because she knows that it’s used to draw blood and it’s an ouch when you see blood.

And when she handed me my blood sugar tester and put her hand on my shoulder and asked “are you alright“? My heart broke in pieces I never knew existed. I can’t hide this disease at times no matter how hard I try to keep her away from it and as a parent, it hurts because you want to seem invincible; to never show weakness. But with a disease like mine, you get the shit knocked out of you sometimes, and your child is there watching you take that beating and it makes you feel like a failure.

But at the same time of the heartbreak, my heart also swelled with such adoration in the type of child I am raising. One who is 2 years old but with a soul as old as time, the one who already has her hand out to help another one up, and the one whose compassion shines through her very core. A 2-year-old that can show an adult how to be selfless at times and I can’t express to you how much I adore this child of mine. She’s my silver lining, forever and always…