On the 6th they reached out to me about Study 4. They had a person drop out last minute and wanted to know if I could or was interested in participating in a study with Libre sensors. The first appointment would be on the 10th and a clinic day on the 13th. I said yes! So I went into the office on the 8th for an initial screening to make sure that I fit the criteria.
This study is being sponsored by Abbott and the primary purpose is to see the “Effect of Ascorbic Acid on Accuracy of the FreeStyle Libre Flash Glucose Monitoring System”. Ascorbic Acid is Vitamin C. I did ask ‘Why Vitamin C?’ because I know there are some drugs that can affect readings of CGM’s and they told me ‘well that is why we are studying it, to see if it does affect the readings’. I have used the Libre system before and had a great experience with it. The only downside was that it wasn’t continuous and wouldn’t alert me until I physically scanned the sensor. I also upgraded my pump and wanted the Control IQ from Tandem/Dexcom.
The study is made up of 3 visits.
*Something they told me (and I didn’t know) was that if you are wanting to participate in sensor/device studies you can not give blood regularly or within 30 days (for this study). She explained that she has seen some studies say that you can’t give blood in the last 120 days.
**This then led to a conversation about giving blood. I was always told that as a T1D I can’t give blood or shouldn’t but she said that the recommendations changed. Now, as long as your numbers are controlled and stable and you have not used pig or cow insulin you can give blood! (As always, check with your doctor first)
*On a side note, a huge perk to participating in the study is the….compensation! For 4 days of wearing the sensors, 13 scans at home, and a 13-hour clinic, I am getting reimbursed just under $800!
In preparation for this day, they let me know that they would be providing meals, snacks and drinks. They have a TV with streaming services, wifi, and comfy chairs. They kept saying it was a long day…...and to be prepared and bring whatever I needed. So I made my list. Book, Charger, computer (so I can work), computer cord…… I just hope that is all that I need.
On the day I got there and they placed my IV. There were 5 of us in the room. I got to pick the first movie. They staggered our blood draws so we weren't at the same time. When they drew the blood we scanned both sensors. Our arms with the IV had a warming blanket over them. (Which I got to take home) They fed us sausage and egg McMuffins for breakfast, chicken wraps and a side salad for lunch, and salmon, green beans and Mashed potatoes for dinner. At each meal we took 100mg of Vitamin C. Usually we take turns picking movies but the guy next to me "lets his grandkids run that thing". So we put on a series. There were type 1 and 2's there. Anytime we shot a correction or bonuses for a meal they documented it.
At the end of the day, they removed the iv and sensors. We returned the receivers and left. I had my check a week later.
Would I do it again? YES! I have a medical condition that doesn't have a lot of positives to it. If I can use it to help other diabetics have better care or more options, I am all for it. For some, it isn't something they want to do but I liked it. Now that I have completed one study they have my name, contact info, and medical history and will invite me for more.
If that is something you are interested in I'd highly suggest seeing if there are any studies near you. Near me, there are a few sensor studies, pump/sensor studies (I am starting a one in about a month) and medicine studies. There are several to choose from, so you don't have to do one that you are uncomfortable with.
-Kami (Diagnosed in 2009)
]]>It is more and more a steady game of “cat and mouse”. Some insurance requires high deductibles on top of a high monthly payment, some insurance dictates what medications are covered or removed from coverage based on formularies, and yet some insurance even makes you jump through insane hoops to see a particular doctor for care.
This is my insurance story….we had insurance through my husband’s employer. Each year, the cost increased…again and again, until a couple of years ago it became more than our monthly house payment, with high deductibles to boot. We had no choice but to “shop” around. We checked many avenues, some we did not qualify due to income status, which is another joke – if we were divorced and filed separately I would qualify in a heartbeat! We decided on a cost sharing plan as the best fit budget wise and what was best for our family. The cost sharing plan pays for Dr visits but not prescription meds, so another challenge had to be addressed as diabetes needs constant prescriptions. For insulin, before Covid, we drove to Canada to pay a more affordable, more appropriate price tag. For supplies, I researched online and found a company based out of FL called ADW Diabetes. I am on a monthly shipment for reservoirs and infusion sets at a cost of about $128 per month. For sensors, I checked into Costco. If you are uninsured, which is what a cost sharing plan falls under, they will run medications through their prescription program, and although it is not “cheap”, it is more cost effective than the online options I researched.
It is unfortunate that we have to negotiate our healthcare in such a way that we can afford the choices of everyday life and still get the medicines we need without breaking the bank. The root cause that is not being addressed is the pricing from the manufacturers. It is fact that it costs $6 to make a vial of insulin, but the cost over the years has ramped us up to an average, whopping $300 per vial!
In the midst of the madness, we have to take control of our own health, decide what is acceptable and unacceptable, and do our own research to find solutions that we can manage. I went through all the emotions of anger, fear, and frustration of “what do I do next”. I refused to settle on “this is how it is” or “this is how it’s going to be”. My husband and I even thought of the extreme of filing for divorce just to be able to afford healthcare! How crazy things can get if we let them push us to a negative tone!! Life is made up of all these events and the choice is to be proactive or to be put on the defensive.
The American Heritage Dictionary of the English Language defines health insurance as “insurance against expenses incurred through illness of the insured”. Wow!! If companies would look at this simplest of explanations, they would see it does not say “for the profit of corporate executives”, or “for the highest bidder on the money trail”, or “for quarterly bonuses that fall in the hundreds of thousands”. NO….it is to help with “expenses incurred through illness of the insured”….how sad and broken our healthcare system has become and how jaded it has made those of us on the other side.
It is more and more a steady game of “cat and mouse”. Some insurance requires high deductibles on top of a high monthly payment, some insurance dictates what medications are covered or removed from coverage based on formularies, and yet some insurance even makes you jump through insane hoops to see a particular doctor for care.
This is my insurance story….we had insurance through my husband’s employer. Each year, the cost increased…again and again, until a couple of years ago it became more than our monthly house payment, with high deductibles to boot. We had no choice but to “shop” around. We checked many avenues, some we did not qualify due to income status, which is another joke – if we were divorced and filed separately I would qualify in a heartbeat! We decided on a cost sharing plan as the best fit budget wise and what was best for our family. The cost sharing plan pays for Dr visits but not prescription meds, so another challenge had to be addressed as diabetes needs constant prescriptions. For insulin, before Covid, we drove to Canada to pay a more affordable, more appropriate price tag. For supplies, I researched online and found a company based out of FL called ADW Diabetes. I am on a monthly shipment for reservoirs and infusion sets at a cost of about $128 per month. For sensors, I checked into Costco. If you are uninsured, which is what a cost sharing plan falls under, they will run medications through their prescription program, and although it is not “cheap”, it is more cost effective than the online options I researched.
It is unfortunate that we have to negotiate our healthcare in such a way that we can afford the choices of everyday life and still get the medicines we need without breaking the bank. The root cause that is not being addressed is the pricing from the manufacturers. It is fact that it costs $6 to make a vial of insulin, but the cost over the years has ramped us up to an average, whopping $300 per vial!
In the midst of the madness, we have to take control of our own health, decide what is acceptable and unacceptable, and do our own research to find solutions that we can manage. I went through all the emotions of anger, fear, and frustration of “what do I do next”. I refused to settle on “this is how it is” or “this is how it’s going to be”. My husband and I even thought of the extreme of filing for divorce just to be able to afford healthcare! How crazy things can get if we let them push us to a negative tone!! Life is made up of all these events and the choice is to be proactive or to be put on the defensive.
The American Heritage Dictionary of the English Language defines health insurance as “insurance against expenses incurred through illness of the insured”. Wow!! If companies would look at this simplest of explanations, they would see it does not say “for the profit of corporate executives”, or “for the highest bidder on the money trail”, or “for quarterly bonuses that fall in the hundreds of thousands”. NO….it is to help with “expenses incurred through illness of the insured”….how sad and broken our healthcare system has become and how jaded it has made those of us on the other side.
]]>I think we all remember the first time we were diagnosed with either Type 1 or type 2 diabetes. I felt like my whole world was crashing down with so many questions after hanging up the phone from hearing those words, “You have diabetes”.
I was working an hour drive from home, so 2 hours in the car daily. I would have to stop on that one hour drive to use the bathroom. I would be so thirsty I would NEED to stop for a drink, usually a 32 ounce diet soda – not the healthiest choice, drink ALL of it, THEN eat the ice because I had cotton mouth even after all that liquid.
I knew something was wrong. I went to the doctor and they dismissed it as “the renal threshold of the kidneys is low." Okay, well…what does that mean? The issues continued and fatigue set in. I dismissed the fatigue as work related, the long drive, the stress of my job at the time, we all seem to find excuses to get us through to the next day.
My husband and I had an appointment for life insurance, the nurse came to our apartment to do the paperwork and we had to do a physical. The agent called a couple days later and said I needed to go to the doctor for further testing, that my sugar number was “off the charts”. I scheduled yet another appointment. With the results from the insurance physical, my Dr. said I had Type 2 diabetes even though he said I did not “fit the category”. I was in the normal body weight range, I exercised regularly, I ate clean on most occasions, and I was 25 years old. I was prescribed oral medications and sent on my way.
Fast forward, the oral medications were not controlling my sugar. I was on the worst roller coaster ride of my life, fighting fatigue, trying to eat low carbs and no sugar, my mood swings were horrible, and I was not well.
Another doctor appointment…..this time he decided to run a T-Cell test to determine what exactly was happening. The T-Cell test came back that I had minimal Beta cells working and they would soon be “caput”. “Type 1 diabetes is a chronic T-cell mediated disease that leads to the destruction of the insulin-secreting islet B-cells resulting in absolute insulin deficiency and hyperglycemia” – www.immunology.org …finally, an answer to move forward.
My life in that long few months was forever changed. I started on insulin shots and tested my sugar 7 times a day. A new routine had to be established and I had to completely envelope myself in my care to avoid long term health issues such as neuropathy, eye problems, and heart disease to name a few.
I decided I could be proactive or reactive with this disease. Fast forward to today…..I have two amazing children ages 20 and 18, I have been teaching exercise for the past 20 years and love helping others be healthy and negotiate their own obstacles, I am the Chapter Lead for Kentucky #insulin4all T1International where we advocate for accessible and affordable insulin. We have a choice: let the disease control us, or we control the disease. Be healthy, be strong, be a fighter….because your life is worth it!!
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What is your typical day like? For most of us I think it looks something like this….
The morning alarm goes off and we are ready to roll out from under the comfy covers to tackle the day that awaits….”BEEP, BEEP, BEEP”!!! Pump alarm….low sugar! As the dog is barking, we run to open the door to let poochie out for the morning duties and we grab the glucose tablets. Cramming a couple in, dog scratching on the door to come back in, time moving on, we stumble to the stove to make some eggs. “BEEP, BEEP, BEEP”!!! Second alarm goes off to remind us of the first alarm….grrrrrr! Glucose tablets not working fast enough! We push the buttons and traverse the dog toys to make it down the hall to take a shower. Bathroom business sometimes wreaks havoc as our waistline gets caught on our pump port and “BAM”!....out comes the port….can you be serious?!?! Jump in shower, in and out, towel around the hair, back to the kitchen, dig in the medicine cabinet and insert a new port. The day is already exhausting and it has only been 45 minutes!! Ahhhhhhhh!!! We have two choices at this point….saddle up and get it done or melt into an oblivion and crawl back under the covers!
Sound familiar? This has been a “typical” day for me. Managing diabetes and all the stress that comes with it. It seems like if something is going to happen, it happens when I need to be somewhere, need to be out the door, and ten million other things need attention as well. I find many times I am “self commentating” just to get through the chaos….”Yeah, I hear you beeping”, “Yeah, I know my sugar is low”, “Yeah, it figures” all verbally come out of my mouth. It is important that we acknowledge what we go through and allow ourselves those vulnerable moments so we can mentally deal with the day/events ahead of us. Some things we can plan ahead for and some things we cannot. After 20+ years of living with this disease and with all the bells and whistles of technology, it still does not get any easier. The management of the disease becomes robotic, but the mental and emotional toll can become overwhelming.
It is also important for us to find our calm. What settles our soul and helps us breathe easier? Sitting outside in the sun with a gentle breeze, listening to a playlist of ocean and nature, going for a barefoot walk to connect and feel grounded, reading a good book. The key is to be proactive in bringing the “happy” into your physical, mental, and spiritual self to balance the chaos we deal with on the other side. Being content is the ultimate, more challenging goal.
“It is common for people to spend too much time working out ways they could be happy, that they forget to focus on the things that already make them feel this way.” ~relaxlikeaboss.com
“Feeling contented is having positive vibes across all aspects of your life.” ~ relaxlikeaboss.com
I know living in these diabetes shoes is hard, more is asked of us in terms of life. Maybe that’s why we can say we are stronger, we have true grit, we are more resilient, and we rise above.
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We all have goals, desires, dreams to achieve something, to do something, to imagine ourselves being on Cloud 9 smiling so big that we did it! When I turned 40, I had an unbelievable goal, one that did not even fit my personality or my diabetes disease….I wanted to compete in a bodybuilding show!! Wow! Really?!?! Get on a stage, in a bling-bling bikini, be “judged”, and enjoy the journey???!! You had to be joking, right?!
I remember driving to work and passing Kristal…she was a known IFBB Pro living in my community at the time…and I thought, “Why not? Ask her if she can help.” She exercised in the gym that I worked at. I parked the car, marched in, determined no matter what to at least ask. And guess what? She said “Yes!” And off we started, this journey of exercising 3 times a day, literally watching what I ate and knowing what foods I had to stay away from, and managing diabetes on top of it all. Was I crazy? No! I was committed, more than ever, to show this disease who was in control. I worked, I sweated, I cried, I started over again and again, knowing that if I could do this, anyone could. People started following my journey, watching on the sidelines, asking questions about everything, being curious of the outcome. Kristal was pivotal in guiding me both physically and mentally as this was wayyyyyyy out of my comfort zone. I went through weeks of exercise cycles, heavy lifting, pyramid lifting, metabolic workouts, cardio cardio cardio, timing my food intake and keeping a close eye on my sugar. Fatigue was a weekly monster always on my back. I kept going. I was noticing changes and so was everyone else. I had more muscle definition, I was losing weight, I was getting stronger, my endurance was improving…and my sugar was leveling with the better nutrition choices of proteins and veggies coupled with the exercise.
The day finally came!! The hard work was done, the variables were managed and conquered, and the stage fright…well, that was still there! With my husband cheering me on and Kristal prepping me backstage, it was my turn to shine. With all the thoughts in my head, I pushed everything aside, whispered a prayer, and with 5-inch high heels and my headstrong determination, I walked on that stage to prove someone with diabetes CAN accomplish amazing things. My very first bodybuilding competition, I brought home a 4th place trophy and an intense “fever” to do it again!! I was so proud and so in awe of that moment and I made it happen, with the help of my husband and a couple close friends who believed in me as much as I did, we accomplished more than we could have imagined. Others gained confidence knowing my story, they started setting goals they thought were previously unattainable. They congratulated me and literally said “And you did that with diabetes!” Yes, yes I did! Since that day I have competed in 9 bodybuilding competitions and brought home 13 trophies!!
Don’t let diabetes stop you from doing something big, something impactful, something out of your comfort zone. We have diabetes, it is a disease, do not allow it to be a “Debbie Downer” for how we live our life. Set your goal, find your passion, and go get it!!
]]>It was Friday, March 7th 2014, at 5 am, and despite a sleepless night rocking Levi, I was anxiously waiting for the doctor's office to open. He had been sick since January with RSV, a nasty respiratory infection, common in everyone though usually harder on infants. The doctors told me the cold-like symtoms could last up to 6 weeks, but as long as Levi was still growing and otherwise healthy, we shouldn't have to worry too much. However not too long after that I started noticing odd things about his eating habits, the number of wet diapers, the way he felt in my arms, compared to the way his older siblings had felt at that age. There were times when he would nurse and nurse and nurse, then cry for more, but then he would spit up, or rather "launch" it, and we would start all over again. I tried feeding him rice cereal, formula, other types of baby food, anything, but nothing seemed to satiate him or settle well. As February rolled around he started to get worse, in addition to the worsening eating habits, and increasing lethargy, my husband started noticing a strange smell on Levi's breath, he described it as metallic. Another day, my Dad commented to me that Levi didn't smell right to him, that Levi didn't smell like a normal baby.
At Levi's 6 month check up I brought a list of my concerns with me to the doctor. Again, they told me that he seemed fine, there were no red flags that they could see, his weight was good, 18 lbs, a little small maybe, but not enough to really matter at that point, he seemed to be making most of his goals for that age group, so not to worry. A week went by and his health seemed to deteriorate in a way that I hadn't seen. Then, the second week, he started vomiting. I brought him back in to the doctors and he had lost 2 lbs. They gave him some glucose water, had us wait to see if he would vomit, and when he didn't, they sent us home. That was Thursday March 6th. As soon as we got home he went to sleep but woke an hour later, and threw up what little water he had drank at the doctors. I called again and said I was going to keep pushing the sugar water like they suggested but was bringing him in first thing the next morning. That evening he stopped drinking altogether, and his cries were slowly getting quieter and quieter. I brought Levi in the next morning, and in 12 hours he had lost another 2 oz, and was weighing in at 15lbs 8oz, as if that weren't enough, the dry heaving had begun.
Shortly after our arrival, we were hustled up to the hospital, they finally agreed that something was definitely wrong. We were brought to a room on the general floor where they attempted to give him an IV but his veins were so disiccated that after four tries they called their best nurse up and did a scalp IV. I will never, ever forget how my baby looked on that table. He was so weak, just barely turning his head, dry retching to the side, his poor body convulsing with the intensity of it, blood from the IV trickling down his tiny head like a tear drop. We were shuffled from general care, to Intensive Care, and from Intensive Care, to Isolation by the nurse's station. The next two hours were a blur, tests were done, tubes were hooked and unhooked, wires tweaked and twisted, machines beeped incessantly. There was a tiny 15 minute window of quiet, my Mom who had arrived at some point had just put some food in my hands instructing me to eat, when the doctor came in and told me that Levi had Diabetes. At first I didn't understand "Diabetes?" You mean, you think he has Diabetes?" I asked. "No" the doctor told me "His blood sugar is over 800, LifeFlight will be taking you to Spokane, to the Children's Hospital, the helicopter will be here in 20 minutes...." at that point I heard a buzzing in my ears interspersed with words like "coma", "fluid transfer"...."Death" the word reverbrated through my mind, and I couldn't hear anything else.
A wave of people came in, prepping Levi for the flight, since I couldn't do anything except get in the way, I stepped out, tears flowing. There were two women in the lobby, an older one and a younger one, they hadn't been there earlier. They were dressed in plain homemade dresses, and had bonnets on their heads, I looked at them and they looked at me, I found myself begging them to pray for my son, to pray for my baby boy, he was only 7 months old. I heard the helicoptor land and rushed back in to Levi. They had him on the stretcher and were ready to go, telling me to leave everything, there wouldn't be room. My mom and my husband were left at the door to the hospital, and with a rumbling of engines and rotors we lifted into the air and were off. For the first time in two weeks, I started to relax, the thrum of the helicoptor, the quiet murmuring of the nurses attending Levi, the fact that finally, Thank God, we were moving, we were doing something, all served as balm to my spirit. We even flew over my parents farm, I could see the cows and horses grazing in the field, and my Dad on the porch, normalcy...and though it felt good to me, my Dad told me later that seeing that helicoptor and knowing that Levi and I were on it, made him feel as if someone had punched him in the gut.
After about an hour, the lights of Spokane rose up around us, and the landing pad, marked with a giant white " X" came into view. Levi was wheeled into the hospital, nurses on either side, me trailing right behind, and brought to the "PICU" unit, the place we would be calling home for the next 7 days. I remember them bringing Levi to his room, the on call doctor talking to me, asking me about Levi's history, asking if anyone in our family had Type 1 Diabetes, (no one does) and explaining to me about RSV and how even though my three year old most likely had RSV as well, it probably wouldn't affect him the same way it had effected Levi. Most clearly, I remember the yellow crash-cart being wheeled in, just in case, with a card stating that Levi had a high likelihood of coding. I don't remember what the doctor looked like, but I remember that crash cart.
Finally after more talking, more nurses, more tubes and wires, and more monitors, Levi was stabilized. The lights were dimmed and for the first time in what seemed ages, Levi was actually resting, his breathing though shallow, was even, and now instead of being gray, his little face was white, his lips fuller and not as chapped. Sometime later my brother who was living in Spokane at the time came. When I looked up he was standing in the doorway his silhouette outlined by the bright lights outside, he seemed so strong and steady that I practically jumped into his arms and collapsed against him. His presence, so much like my Dad's, made me feel like maybe, just maybe it was going to be okay. We sat side by side for a little while until one of the nurses came and got me, insisting that I sleep, they had a room for me and my husband, who was driving up. My brother assured me that he wouldn't leave Levi's side until my Mom and Greg arrived, without further a-do the nurse led me to our room. Once there, I kicked off my shoes, said a prayer, and let the tears and oblivion take me. In the night, I felt my husband come in and wrap his arms around me, the warmth and comfort we took from being together and the knowledge that our precious baby was being cared for by the best people in the state gave us strength. That strength I think carried over to Levi as well.
In the following days, Levi slowly began coming out of it. By Monday, his color was coming back, he even smiled at us. On Tuesday, he was sitting up and the nurses had to move the rails on the crib, what a triumph that was. Wednesday the doctor told us we could start thinking about going home. For the next day and a half, it felt like we were in college again. We had to learn so much about caring for Levi, how to mix his insulin, how different foods would effect him, warning signs, etc. it was exhausting. Finally Friday arrived and equipped with our JDRF backpack, books, medicines and our little "poke me here" bear, we were able to take our "new" baby boy home.
I don't know how we would have done it all if it hadn't been for our wonderful family. My husband's parents and my Mom took turns caring for our older children while we were in Spokane with Levi, making it possible for Greg and I to stay up there together. They were integral in the weeks following Levi's diagnosis which included another hospital stay, this time with pneumonia. In the year and a half since DX they have always been willing to step up to the plate and help out when necessary.
Diabetes has changed our lives but my older children and Levi never cease to amaze me. My 10 year old son carb counts, my 8 year old daughter knows how to check Levi's blood sugar and does it for me when my hands are full. My 5 year old son is incredibly protective of his baby brother, and is always telling people what they can and can't feed Levi, he even makes sure the juice I mix up for Levi is sugar free. Levi packs his pump around, takes his "pokes" as he calls them like a champ, and is just as rambunctious, funny and playful as any other 2 year old. As for me, I have a supportive family, beautiful children, and an amazing husband. In short, I have been blessed.
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The following is a warrior story from a friend of mine. He had a rough go of it, but has found what works for him and is now thriving! Sometimes it takes going through a storm and coming out on the other side to enable us to get better, get stronger, and reach out to help others. We hope this story inspires you.
***We are not promoting any certain type of diet…this is Joshua’s story and has been successful for him. Please consult your Doctor when considering any changes to your current regimen.
After needing my life revived not once, but twice – thanks to severely low blood sugar levels due to life-threatening diabetes – I knew I was on borrowed time. Suffering from morbid obesity as well as a host of other ailments that were leading me into severe depression and physical agony, it was a powerful encounter that changed everything for me. Josh LaJaunie has been a long time friend of mine who had lost 230 pounds. He is a long distance runner and his personal transformation inspired me.
Up until then I had been living a reckless life, turning a blind eye to the over abundance of fried junk foods I would regularly consume. My mother had recently died of a heart attack and mourning her loss added to my depression. I was feeling sicker by the minute and the little voice inside me kept urging me to get up and get well. I did not like the road I was on. I reached out to my friend, Josh LaJaunie. His friendship turned into a pivotal role in helping me transform the bad path I was on. I allowed him to mentor me – in exercise, in nutrition, in health. He slowly started whittling out animal products and junk foods: red meat, then cheese, then diet sodas. I started to notice that whenever I consumed even a small amount of animal products, my blood sugar would be sky-high the next morning. So, one day I cut them out completely – “cold turkey”… pun intended. 😊 Just 2 days after making that decision, my blood sugar levels were back to normal and have remained there. I have since lost a staggering 100 pounds. My friend knew first-hand that person to person advocacy can change the course of one’s life, and perhaps it is what saved mine. Ever since I found my antidote to the painful symptoms associated with Type 1 diabetes and reclaimed my life, I try to inspire others living with Type 1 and Type 2 to do the same. Surprising even myself, I have now pivoted my life to revolve around running instead of fast food. I have taken to the pavement, to the trails, and I am not slowing down anytime soon. I have accomplished many things since getting my life back and I want to help others by showing them anything is possible, do not let diabetes get in your way. I am proud to say I have completed numerous half marathons and full marathons with finish line times that even shock me! Life gives us bumps in the road, it is up to us to figure out how to get over them. Much love.
]]>You might think, “Oh, my story is not so important”, or “My story is just ordinary”…No!! It isn’t!! You are extraordinary and you are fearfully and wonderfully made. We all remember the moment we heard that diagnosis, “You have diabetes”. Processing the initial sounds of those words and learning how to proceed are overwhelming steps and affect each of us differently.
Your story could be the catalyst that brings about much needed change. Look at Kevin’s Law and Alec’s Bill now passing in individual states. Unfortunately, Kevin and Alec passed away from insulin rationing but their lives were not forgotten. Their lives mean something….it is a demand for improved legislation so others have access to medication they need.
We must focus on what we can do, one step at a time. Impossible has no place as we fight the battle to survive. Our story can bring education and awareness to those unfamiliar with diabetes, unfamiliar with the health challenges, and unfamiliar with the cost to live. I shared parts of my story on Facebook and received many comments from those who had “no idea” what I am going through and how the broken healthcare system is structured for big pharma benefit and not the patients benefit. The story of positive change surrounds Alec Smith’s memory. Alec’s mom, Nicole Smith Holt, is a strong advocate fighting for high insulin prices to be lowered. She engages beyond her own state as she has experienced firsthand the loss of her son due to high insulin costs. Nicole Smith Holt is the T1International #insulin4all leader of her state. She is sharing Alec’s story and keeping his memory alive and active in these legal battles, doing good in his name.
I challenge you to share your story, the good, the bad, and the ugly. Connecting with our community of friends and family to share how diabetes impacts us opens doors of opportunity. Education needs to happen on all levels. I recently filed an appeal with a healthcare cost sharing organization regarding a higher required monthly premium due to my diabetes. They will not consider my appeal until I provide nutrition and exercise logs. I became so angry and realize that education also needs to happen at the most inner levels of insurance companies. My response to them was, “I can provide exercise and nutrition logs to you until I am blue in the face, it will not change the fact that I am diagnosed with Type 1 diabetes. This is a disease not a lifestyle choice”. A letter from my endocrinologist was not enough to push through my appeal. I have yet to get a response, it has been right at a month.
Our stories can push boundaries, educate the ignorant, and bring clarity to those who lack understanding about this disease.
Share your story, use your voice and experience, we truly can change the future. Your story is significant, your story has meaning, your story can be the catalyst for change. It is not impossible.
]]>I researched different advocacy groups to educate myself on their purpose and activities towards battling a seemingly huge pharma monster. I have already learned so much in the past few months. I want to be in the midst of changing a broken and corrupted healthcare system. I want to see people like me smiling because they aren’t worried about how they will pay for their needed medical devices and prescriptions. I am beyond sad and frustrated hearing about the passing of someone because they had to ration insulin or they could not afford their insulin so they stopped eating. This is a huge problem and we must address it and we must change it. We should not have to travel to another country to get what we need. It is available, here and now, and costs pennies on the dollar to manufacture. We need to use the anger we have over this situation to stir and invoke a movement of positive change. People need us to speak out, people want to live freely without worry, people need advocacy to bring about a lifestyle where they can achieve their dreams. Here is a list of advocacy organizations if you need a starting point:
T1International
Diabetes Patient Advocacy Coalition
American Diabetes Association (become an ADA influencer)
This is a battle with many branches: there is a legislative fight at the federal and state levels, there is big pharma influence with the insulin manufacturers linked to the pharmacy benefit managers, and there is educating and involving our local communities who aren’t aware. We were never meant to “do life” alone thus we were never meant to fight alone.
Wars can be won. It takes motivation, desire, vision, purpose, and determination...a wave just has to start with one person, then it catches on to another, and another until it builds momentum and cannot be stopped.
]]>Pocket Innerwear specializes in making life with Diabetes easier. We supply superior Diabetes Insulin Pumps and diabetes accessories for kids, teens and adults. If you need a Diabetes Insulin Pump, a Pump Pak or Diabetes Pump Accessories, you are in the right place! We take care of diabetics of every age: you and your child on an insulin pump can live the best life possible through pump pockets. You can find great diabetes blogs and diabetes accessories like insulin pump cases, insulin pump paks, and insulin pump clothing to make the transition less stressful. And we service type 1 diabetes beyond transition and create a diabetes management system. A new Type 1 Diabetes diagnosis is a complete lifestyle change and shocks the entire family. Pocket Innerwear wants to make that change easier on everyone. A toddler new to an insulin pump takes careful thought. There are many insulin pump packs available, but none as well done or as secure as our insulin pump pockets. Our pump pockets make rough and tumble toddler life still safe. And Pocket Innerwear insulin pump pockets offer total freedom in all clothing choices. Just layer them under any regular clothing. Our store offers insulin pump cases for teens, insulin pump accessories for adults and forgets tired and annoying insulin pump pouches. Insulin pump cases and clips are out and pump pockets are the new way to manage your insulin pump . Watch our site for diabetes clothing for children and diabetes clothing for adults with new styles for holidays. The great thing about our selection of diabetic accessories is that you can wear your insulin pump pocket to show off your pump or your can choose to conceal your pump and hide it away. It does not matter which insulin pump you wear. If you wear a Medtronic insulin pump, an Animas insulin pump, a Tandem T slim insulin pump, or an Omnipod insulin pump, you will find our diabetes pump accessories work with all pumps and all styles. Do you wear a DexCom or other CGM? Our pockets will carry a DexCom, iphone or even your diabetes low supplies like glucose tablets and emergency diabetes supplies. Pump accessories can be fun and convenient. Send your child with type 1 diabetes out into the world with confidence knowing his insulin pump accessories are keeping him safe and prepared. Pocket Innerwear is determined to make life with Type 1 diabetes and insulin pumps more positive and more manageable. Get patented insulin pump clothing to make wearing an insulin pump easier. For anyone with diabetes, Pump Paks need to be a comfortable and routine part of life. Making life with Diabetes easier is our mission at Pocket Innerwear.
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You may know of Kevin Gates. You may not. That’s not important.
Diabetes is a condition where you hear the word “can’t” quite often. People LOVE to tell you no, you can’t do (fill in the blank). I heard it all the time growing up and still hear it to this day.
What matters more is how you RESPOND to that doubt, that questioning, and how you turn it into motivation.
Diabetes does knock you on your butt sometimes. It’s not the easiest thing to manage. You’re dealing with something 24/7/365, with no days off.
Ever.
You’re manipulating a hormone that can kill you if you aren’t careful with it, whether you take too much or too little. Your blood sugar has an “ideal range” to stay within, and 20+ factors can influence blood sugar, so even if you do EVERYTHING right, that may not be enough.
So when it does come around and knock you down, you pick yourself up, dust yourself off, and go back at it again.
3 ways diabetes has challenged me over the years:
Whether you’ve been T1D for a month, a year, or 25 years, I can guarantee that you’ve had a situation where you went low at the ONE TIME you didn’t want to drop.
I’ve had the pleasure of being low during workouts and athletic competitions, where I had to sit patiently, drink my carbs, and wait for my blood sugar to come up. More often than not, it takes longer than the 15 minutes I hoped it would take, and suddenly, I’ve missed half my game or need to warmup again for my workout.
I went low during AP testing in high school. My brain went completely cloudy, my focus disappeared, and I spent the next 45 minutes waiting to feel good enough to continue. Thankfully, I had accommodations so it didn’t hurt my score, but still…
I’ve been low on dates. That’s a fun conversation to have…
Her: “OMG I’m so glad to finally get to hang out for real!”
(Mind thinking: I’m low – must eat.)
Me: “Yeah…”
(Awkward 30 second pause)
Her: “Are you good?”
You can imagine the rest from there.
Maybe this isn’t such a bad thing, given I’m dedicated my career to food and becoming a registered dietitian, and this undoubtedly influenced my decision to go this route. But since I was 7, my thoughts look like this:
Scene: At restaurant with my friends
Friend 1: “Wow, this (fill in the blank) looks awesome!”
My brain: “Well, this probably has 60g carbs in it, plus there’s fat, which is going to require an extended bolus. Now what percent of my bolus do I take up front and how much over what, 3 hours? Do I need to consider protein? What if I eat dessert after the fact? Oh snap, I just ate a whole loaf of the bread that they give you when you sit down…probably should bolus for that. I missed the pre-bolus window, $#%#”
You get the idea. Diabetes has always challenged me to think about what I’m putting into my body and how it will affect me, quite simply because I want to feel good two, three, four hours from now.
Nearly everything we eat affects our blood sugar, so we need to account for that.
People think I’m OCD for entering most of my food on MyFitnessPal, but if I can stay on top of what I eat to maintain better blood sugars, why not?
It does get really tiring after awhile when I just want to indulge without thinking about it.
Y’all know this one only too well.
You’re in the aforementioned situation and don’t have the slightest clue what amount of insulin to take, so you…
GUESS. Yikes.
It’s like Russian Roulette. Sometimes, you’re handsomely rewarded with an in-range blood sugar hours later.
Other times, you’re forcing yourself to shove glucose tabs down your throat when the thought of food repulses you. Or you’re taking insulin on insulin trying to lower your 350 that seemingly wont budge.
It’s not fun, but you have to live a little too, and this is the risk we sometimes take.
This one is brutal, especially in my graduate school experience.
In today’s world, it seems like everyone is ridiculously busy and overcommitted, without giving himself or herself a chance to catch their breath.
Stress mounts. And you know what?
Stress and blood sugars are like oil and water. They don’t mix.
Tons of stress will elevate your blood sugar, and…drumroll…
…not allow it to drop quickly, even with insulin.
I’ve had days where my blood sugar has just SAT at 225, no matter how much insulin I took, how much I exercises, how much water I drank, etc.
The moment the stress went away, BAM. I was 130 without doing ANYTHING.
It’s insane how the mind-body connection really has such a drastic impact on health.
These are just a few ways in which diabetes has challenged me over the past 18 years – how has it challenged you? Leave a story in the comments below!
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I was 7 years old. I had just moved to Wisconsin, and my family had driven about an hour to Six Flags: Great America for my first ever experience at an amusement park.
After a ton of anticipation, we got to the gates and walked through. My eyes were big. I was in awe at the massive rollercoasters and overwhelmed by all the gigantic stuffed animals.
Ten minutes later, my dad’s cell phone buzzed. It’s Children’s Hospital of Milwaukee. I was still still in lala land – I’m 7, how could you blame me?
It was then that my dad found out I was diagnosed with Type 1 Diabetes. He told my mom and then me.
Did I care? Nope. I was at Six Flags!
Reality hit me HARD the next day when it was time to go to the hospital for educational sessions that lasted ALL DAY LONG. I didn’t know what was going on – after all, I was more focused on starting second grade in a few days and all the new friends I would meet than I was about some random condition that I hadn’t heard of previously.
I learned what a blood sugar was, why I needed to check it, and how to do so. At diagnosis, my blood sugar was 240 mg/dl. Numbers meant nothing to me at that point in time, but I was told I should be lucky – many people are diagnosed in the 600s, 700s, 800s, and spend a week in the hospital.
Me? I was living a normal life and was suddenly told I had to constantly prick my finger with a painful lancet (my, have we come a long way or what?) and wait a full minute for my blood sugar (repeat: my, have we come a long way or what?) on a meter that was the size of a Stephen King novel.
I didn’t really understand it, and then we went over carbohydrate counting and insulin dosing. I liked math (I still do), so I honestly didn’t mind this portion of it…
…until the injections were involved. Then it wasn’t so fun anymore. They hurt.
I asked if this is temporary. They told me it’s for life.
“So you mean I’m going to have to check my blood sugar, count my carbs, and dial up insulin until I’m old?” I ask.
Yes.
I really wish I could give you an accurate depiction of my emotions in that very moment, but I blocked them out, intentionally, so they must not have been very good. I do, however, remember someone saying that with T1D, you have to grow up faster than the average kid and take on a lot more responsibility, whether you want to take it on or not.
I won’t lie and say that I embraced it fully and approached it with the same attitude I currently have about it, because that would be a lie. I was starting a new school in a new place with new friends with a new chronic condition. That’s a lot for anyone to handle, let alone a 7 year old.
I will say, however, that I rose to the challenge.
One month later, I was taking injections on my own and testing my blood sugar on my own. Two months later, I was active in the carb counting process. I wasn’t perfect by any stretch of the imagination, but I certainly was trying my hardest.
It started to become integrated into my daily routine as I got better and better with time. Fast forward 18 years and POOF! Here I am, with a FAR greater understanding, a wealth of knowledge and experience, and an entirely new outlook on T1D.
It’s crazy to think about how far I’ve come and how far the diabetes world has come since then. I recently celebrated my 18th diabetes anniversary with peanut butter cheesecake (entering food heaven, be back soon). I entered my bolus into a colorful, touch screen pump (Tandem T-slim) after seeing my blood sugar on my Dexcom G5 receiver on my phone, took the bolus, and enjoyed the deliciousness as my blood sugar rose and came right back to target range.
When I started out, I had a meter that took so long that the hospital programmed ads to run like a ticker across the bottom. REAL ADS. I think they were about classes at the hospital that I never went to, but after a few months, I had memorized them all. I mixed clear and cloudy insulin (Humalog and Ultralente, the latter of which isn’t even made anymore), and every meal was a glycemic adventure: I never knew what was going to happen to my blood sugars. It’s like another universe, and one in which I am thankful I no longer live.
It’s not a bed of roses. It’s not easy despite all the technological advances. There are still days of uncertainty and frustration. But, I can say that T1D has definitely shaped me into the person I am today, and I have found a way to appreciate the lessons it has taught me.
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^^Me at 9 years old
I’ve always been obsessed with sports, both spectating and participating. A diehard fan of the Minnesota Vikings and Twins, I played baseball as a pitcher and outfielder for 12 years before my body succumbed to injuries. During my career, I started working out to become better, faster, and stronger and fell in love with training for speed and strength. I dove into the research to learn as much as I possibly could, and subsequently became a certified strength and conditioning specialist (CSCS) through the National Strength and Conditioning Association. While I’ve been in school, I train a variety of clients, both in-person and online. I LOVE being active, indoors or outdoors, in a competitive way or just for fun. I have also dabbled in bodybuilding competitions (I took 2nd in my first ever show!) and am a published fitness model.
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^^circa 2011
I always want to achieve more, and I’ve never allowed diabetes to slow me down. At this point, it’s woven into the fabric of who I am since I was 7 years old when I was diagnosed (more on that to come). Life without it has been a bit of a distant memory. At first, I treated diabetes like an unwanted guest at a party – lurking awkwardly in the background, occasionally interrupting the festivities – until I finally decided to get to know it and embrace it.
That took awhile. Years actually. It took until my first Children with Diabetes conference in 2008, when I realized I wasn’t the only one dealing with the highs and low of diabetes, to finally understand that rather than allowing it to control my life, I could start living my life to the fullest.
Every. Single. Day.
Life became WAY more fun once that started happening. New doors started opening, new opportunities flowing my direction. My confidence soared.
Now, I’m an advocate for the T1D community and want to become a certified diabetes educator to give back to the awesome community that has been so life changing for me.
And now, I find myself here as a brand ambassador for Pocket Innerwear, writing this intro post to you.
^^^PocketInnerwear model
Welcome to my life.
Some more random fun facts about me (but feel free to ask more and I’ll answer): I’m Midwest-raised, but call Florida home…my favorite food is peanut butter and favorite vegetable cauliflower (this is important to a future dietitian!)…I wear a tandem T-slim and a Dexcom G5 platinum…I was in one of the early bionic pancreas trials…favorite animal is a panther…I have two younger siblings…add me on IG @manoftzeel.
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