Last year was my first year at JDRF and my first year experiencing Beat the Bridge. It was kind of amazing to see 10,000 people in one place, supporting me...well type 1 diabetes. Many of you were so extremely generous and donated to the team I'm on. So generous in fact, I had to up my goal! So this year, I've decided to aim high and have set a goal of raising $5,000.
In order to achieve that goal, I've decided I'll be mixing up my messaging all the way up to the big day, May 19th. My hope is that one of the posts will strike a cord and you'll donate that day. Or you'll forward it onto a friend another day. Or, maybe you'll send me a fun message. Whatever it is, I appreciate you taking the time to read about my story and type 1 diabetes. That is truly enough support for me!
For Installment 3 I have asked my brother to do a guest post as T1D does not simply impact the person or persons in the case of my family with T1D...
I am writing this at the request of my sister who is a Type One Diabetic (T1D). I am also writing this for myself as it may help me to better understand the impact of growing up with a Dad who battled to manage this disease and, I suppose, I am writing this so that in some way, it might help others who have been impacted by this disease.
My first memories that relate to this disease are of a small faux leather pouch which contained several small glass syringes. I used to see it on the counter with all my dad's stuff, it always seemed so cool, neatly organized, with moving parts (plungers) that just begged to be played with! It didn't seem too out of the ordinary, it was just something that my Dad did. I remember seeing him "shoot up" in his butt and being embarrassed when I would walk into a room and get "mooned". Up until about the age of 10, diabetes had little impact on my life.
This was about to change. My Dad worked as a welder starting on large ships in southern Californiaand working on large barges and crab boats when we moved toWashington. When his eyesight began to fail he was working for a fabrication shop doing all kinds of welding work. Whether it was the failed eyesight or failing kidney function which caused him to go onto disability, I don't recall. What I do remember was that my Mom started working and money was tight and he had difficulty welding my mini bike handlebar because his eyesight was failing.
My Dad's health was rapidly declining. For a period of several years it seems as though he spent more time in the hospital than at home. I would go to my aunt and uncles house after school until my Mom got off work. Some days we would travel the hour down the Columbia River Gorge toPortlandand visit him, other days we would go home where my Mom would prepare dinner for us after having worked all day and we would call my Dad and talk to him on the phone. When he was home, he was limited in what he could do. The peritoneal and hemo dialysis he was using in place of his now failed kidneys, was only just sustaining him. I remember him walking up four or five stairs and having to sit down and rest. No playing catch, no doing yard-work, limited family outings...about those. Some background on dialysis, it requires large bags of a saline solution which must be drained into the peritoneum left there for about four hours and then drained back out. Our basement was filled with the boxes a stack 5 feet wide by 10 feet long by 8 feet high would have to be replenished every couple of weeks. To take a family trip required incredible logistics skills to fit everything and everyone into a vehicle and we were very limited on trip duration. We didn't take many trips.
I distinctly recall the timing, it was a day or two after the space shuttle challenger accident when the call came that a match had been found for my Dad, he was going to get a new kidney. I have to pause to say that diabetes had, at this point become a "background" issue. Kidney failure had brought my dad to deaths door. This did not mean that the day to day management of diabetes had gone away...there were still constant conversations about diet, less salt, less sugar...waking up to my Mom's voice "Richard!!! drink the juice!", my Dad "Howwwww Nowwwww Browwwn Cowww [sound of spitting juice]". My Mom "RICHAAAARD DRINK THE JUICE!!!". Occasionally, my Mom would have to call my uncle who was a paramedic to come up and help her. I just remember laying in my bed waiting for quiet to return, it seemed normal. On a side note, the syringes my Dad used for both his insulin injections, and some larger ones which I think were used to inject meds into his saline bags were great, if not dangerous, squirt guns. I also remember injecting water into all nature of things, fruit in particular was fun. I also did some things which, in hindsight were pretty dumb...so dumb I won't even expose the level of my transgressions! I did enjoy the utility of the syringe!
My Dad's kidney transplant was successful and besides the cyclosporin (anti rejection meds) in apple juice and insulin many of the drugs my Dad had been taking went away. My Dad always struggled to manage his blood sugar. I don't know exactly why, other than even at that time the level of knowledge and technology available to manage the disease was still limited. My Dad also had a stubborn streak I think and he wanted to eat and live how he wanted to eat and live and he did. By this point I was in High School. There were now at regular yells from my Mom in the night to come help in some way, "He's low again". I remember having to restrain his legs as he kicked wildly on the floor, I still don't know how he didn't break the bones in his heels. Coming down stairs in the morning (my Dad often slept on the couch) was like playing roulette, "is he low this morning?" At some point in High School my Dad had a toe amputated and then another. Then I graduated high school and only lived at home during the summer, and eventually only visited home.
I did not see the daily challenges faced by my Mom and sisters in living with a T1D. These seemed to be the good years from my perspective, my dad was relatively healthy. He was active in the community, played the role of "Mr. Mom" and thoroughly enjoyed supporting my sisters in their athletic pursuits. My second year of living away from home year round, my grandfather passed away. I drove with my Dad toLos Angelesand he and I cleaned out what remained at his home. It was then that I experienced one of the more disturbing "lows" of my Dad's. It happened how it always did, for some reason, the dog, a sound, silence, caused me to wake up in my grandfathers empty house. My Dad was moaning and then started yelling "The blood! The blood!" He was sweating profusely and crying, I grabbed the tube of Glucagon and coaxed him into taking it. Gradually he returned to normal. I asked him about why he was talking about blood. I learned that his Mom, my grandmother had died in that house in his arms while bleeding. The combination of being in the house and being low had brought it all back to him in a vivid way.
The years and hospital stays blend together for me now, I don't recall if the amputation below the knee or the massive heat attack happened first. Regardless, the late 90's saw my Dad's health declining again. I remember phone calls with my Mom and sisters about his health and how he wasn't able or willing to do much around the house anymore. My Dad was always a car buff, he had amassed a wide variety of tools, thousands and thousands of dollars worth. Growing up he would always get on me about keeping the basement shop clean. In the later years, I would come home to a mess in the basement. I confronted my Dad one day thinking I would motivate him to clean the basement he was always so insistent on being clean and organized. I launched into him about how he had always insisted that I keep it clean and now look at it...he just stood there in silence never saying a word back to his belligerent son. I think, looking back, that by then just walking down the stairs to the basement and back up was a chore for him. He never talked about how he felt, physically or emotionally. Some might think this good, he didn't complain about the difficulties he was facing. I think it ended up isolating him from us, his family. More on this later.
After the amputation he had 6 months or so where he was fitted with a prosthetic and began to learn to use it. There was still a light in his eyes, he had his mobility. A short while later more bad news, he had another sore that would not heal on his "good" foot. Around the same time he began having digestive problems. His other leg was amputated. There were increasing visits to the hospital for "stomach issues". Eventually my dad was diagnosed with terminal cancer that had originated in his colon and spread to his liver. There was conjecture that diabetes had contributed to this through deadened nerves, he didn't feel the pain which would have been evident. In addition, doctors were focused on diabetic complications and I don't think cancer was considered until it was too late.
I said goodbye to my Dad sometime around Halloween in 2003. He was in hospice at home and on pain medications. I was leaving to return toBoiseand I walked into the living room where he was sitting slumped over, head hanging. I stood beside him and stroked his head telling him I loved him. I was surprised as I walked away when he whispered a barely discernible "I love you". He died less than two weeks later.
How did growing up with a Type 1 Diabetic father impact me? I am still struggling to understand how it impacted me. I know that the stress my Mom was under impacted her reactions to some of my childhood follies, the reactions seemed amplified. I spent some of the important "formative" years visiting my Dad in a hospital instead of learning how to throw a baseball or ride a bike. Not that I didn't learn these skills, but I did not learn them from my Dad. Looking back there was always a very real crisis occurring, low blood sugar, kidney failure...our house had a different "normal" than my friends houses. It taught me the importance of resilience and a positive outlook, or perhaps my Dad taught me the importance of resilience and a positive outlook. It taught me the importance of support. From family to friends to strangers the love and support our family received through years of difficulty is amazing! I am sure there is more which I will continue to discover through family conversations and introspection.
Brief but deep thanks to Hospice of the Gorge for their support during my Dad's final days. Love and thanks to my Uncle Jack who, despite his eccentricity was an incredible help to my Mom and sister. To my Uncle Pete and Aunt Paula for always being there and finally, respect, admiration and love for my courageous sister Annie!
Second Installment I recently watched a video that made me laugh. It was basically talking about the difference between Diabetes and Dye-a-BEETUS, as in "I'm Wilford Brimley and I have Dye-a-BEETUS." But it got me thinking that most people are not very familiar with TYPE ONE DIABETES, what it is, why it happens, what it means etc etc.
So, I though this installment would be a bit of an education about TYPE ONE DIABETES and my life with it.
What is Diabetes?
Diabetes mellitus (MEL-it-us) is the medical name given to disorders of the regulation of blood glucose (also called "blood sugar") in the body. The two major types of diabetes are T1D and T2D.
About TYPE ONE DIABETES (T1D)
T1D is an autoimmune disease that strikes both children and adults at any age. It occurs when the bodies own immune system destroys the beta cells in the pancreas. Beta cells produce insulin, which is an essential hormone needed by the body to obtain energy from food. The onset of T1D has nothing to do with diet or lifestyle. T1D strikes suddenly, causes lifelong dependence on injected or pumped insulin, and carries the constant threat of devastating complications. Type one is an AUTOIMMUNE DISEASE.
T2D is a metabolic disease (also called "metabolic disorder") in which a person's body still produces insulin but is unable to use it effectively. T2D is usually diagnosed in adulthood, but there is a growing number of cases of T2D in children due to an increase in childhood obesity. T2D sometimes can be treated with diet and lifestyle interventions, as well as oral medications. T2D does not always require injected or pumped insulin.
As a type one diabetic, we are certainly in the minority of the diabetes world. This can be frustrating as clearly stated above, type one diabetes is very, very different from type 2, but most people do not know the difference.
What does insulin do? Why is it important?
When you eat, your body converts it into quite simply put, sugar (glucose). Glucose is what all the cells in your body use to function, it is the fuel for all body systems including your brain.
You can think of insulin as a key. It is what allows glucose to get from the blood stream into the cells.
In a non-type one diabetic, you eat a sandwich, that sandwich converts to glucose, your body releases insulin so that the glucose can go from your blood into your cells. Your "blood sugar" is easily regulated.
For me, a type one diabetic, I eat a sandwich, that sandwich converts to glucose, but my body does not produce insulin anymore so the glucose that was sent off in my blood to fuel the rest of my body is stuck. Unable to enter the cells without the "key"- insulin.
Left untreated, blood sugar will continue to rise. Your body is literally starved, even though you are eating and drinking normally.
The symptoms of type one diabetes make much more sense when you understand the above. I lost about 30 pounds in a very short time. Right before my diagnosis I was fitting in size 0 to 2 clothes. I was eating normally, but unable to fuel my cells, my body was forced to start "eating itself" and using my own fat & muscle for fuel.
My body was working overtime to flush out all of that excess sugar, so I was peeing ALL THE TIME. Shortly before diagnosis I was in a building with 3 floors. I was unable to go from the 1st floor to the 3rd floor without having to use the restroom on the 1st floor, wait for the elevator and RUN to the 3rd floor bathroom. It was normal for me to pee every 20 minutes, easily.
Because I was peeing all the time, I was thirsty ALL THE TIME. I remember showering and drinking the shower water. Sitting on the toilet peeing while I had a super size cup of water. The thirst was overwhelming and all consuming.
I was exhausted, falling asleep in my classes at school, taking 3 hour naps twice a day.
I finally called student health services and said I need to be tested for type one diabetes. My blood sugar came back over 500. A normal blood sugar is 80-120.
I am a bit embarrassed to say that even though I was well aware of the symptoms of type one, I was definitely in denial and explained them away. Looking back now, it?s shocking to me how sick I was and how awful I must?ve been feeling...more on that in the next installment.
Management of T1D
Because I no longer make insulin and as you learned above, insulin is VERY important. I wear an insulin pump 24 hours a day, 7 days a week. It looks kind of like a pager (or so it?s been mistaken as...Brent Wigen) with a tube coming out of it. This holds insulin and gives me micro doses throughout the day as well as large bolus amounts when I eat. I also wear a continuous glucose monitor, a device that monitors my blood sugar also 24 hours a day, 7 days a week. In addition, I have a glucometer that tests my blood sugar about 8-10 times a day. All in all, I have 2 devices attached to me at all times that are inserted with a needle and have either a catheter or wiring sticking into me. To check my blood sugar, I have to poke my finger with another needle. Needless to say, it?s a lot of poking, prodding, carrying around, adjusting, planning and managing. But, I am so thankful for each of these devices as they have allowed me to maintain a healthy life. This was not the case for my father who did not have such "luxuries." Each of these devices and their accessibility to the T1D population is a direct result of YOUR donation to JDRF and my Beat the Bridge Team.
Thank you as always for taking a few moments to learn about my life with type one. XOXO, much love!
Most of you know that I am a type 1 diabetic. I was diagnosed 12 years ago at age 21. You also probably know that my father was a type 1 diabetic and passed away due to diabetic complications.
You all also know that I don't talk about being type 1 that often if at all. It is just a part of my life, just like brushing my teeth. It?s just something that I "do" everyday.
But, the reality is that it is NOT like brushing my teeth. At all. I mean, if it were like brushing my teeth it would be as easy as...
I brush my teeth because it keeps my teeth healthy, gives me fresh breath and pearly whites.
I put toothpaste on my toothbrush every morning and night and sometimes during the day and brush my teeth.
That's it. Plain and simple.
Instead it's more like this...
I take insulin everyday because it is keeps me healthy...errrr alive. I take insulin everyday because it keeps me alive.
I wake up in the morning and check my blood sugar, because I want some coffee and need to make sure I give myself insulin to cover my coffee. But wait, I'm high, so why am I high? What did I eat last night? But I checked my blood sugar before I went to bed and it was "in range" so am I getting sick? Is my pump working alright? Did it become disconnected? Or is it just high because it's high?
Decision-It's high because it's high, will research further if blood sugar is high tomorrow morning as well. Bolus with a correction, but subtract one unit because I have a busy morning and don?t want to possibly go low in my morning meeting.
Time to shower, but need to wait a few minutes to allow the correction bolus to finish.
Ok, now I can shower. Unplug pump. Put pump in a somewhat safe place, because pump costs $5,000. You don?t want to accidentally drop that in the toilet or something!
Plug pump back in, jimmy rig my bathrobe pocket so the pump will fit in it.
Time for breakfast.
Check blood sugar.
Count the carbohydrates in the breakfast. Actually, I eat the same thing EVERY morning, because then I don't have to count the carbs EVERY morning. I just know exactly what they are and how the food will react with my body. How quickly my blood sugar will rise, when I will be hungry again, what it will do to my blood sugar after a few hours. Pretty exciting right? But I think about what I eat because fat, carbohydrates, fiber, protein, all of that makes a difference in how I will treat my blood sugar.
Enter blood sugar into my pump, enter carbohydrates into my pump, hit ACT, hit ACT, hit ACT, hit ACT. Get insulin.
Ooops, I forgot my coffee on the counter at home. Ok, am I going to be stuck in traffic long? If so, what do I have in my car that I can use to replace the coffee? How many carbs worth of coffee was that? Can I make it to the office to get a new cup of coffee in time? Let?s wait and see what traffic is like.
Traffic is bad, and I'm stuck. I have a juice box, so I'm alright. But, now I'm low and correcting while driving. That's great. Focus. Focus. Focus.
Now my CGM is alarming (a CGM is a continuous glucose monitor), and it's telling me I'm low. So I have to clear that alarm. It will continue to alarm until my blood sugar goes up. Annoying, but possibly life saving. Does the guy driving next to me think I'm texting while driving? Playing a video game? I?m a type 1 diabetic-quit glaring at me!
Make sure CGM receiver is in a safe place, CGM costs $3,000. So I have $8,000 worth of diabetic equipment on me all day, everyday. That?s awesome. And stressful.
And that's just the first 1 ½ hours of my day. Multiply that by 24 hours.
So it's not like brushing my teeth really. At all.
But I work very hard to make it seem like it is. Because to be perfectly honest--it's not about me, never was, I don't think it ever will be. I am a type 1 diabetic. This is my life. I of course have hopes that it will get better (more on that in the second installment), but it's not about me.
I started working at JDRF because I wanted to do something for my dad. I was unable to communicate to him when he was alive how much I wanted to help. How much I loved him. So this is my way of making up for that.
And then, Brent and I got married. And I want to do this for the babies that we want to have. JDRF is working to prevent type 1 diabetes from ever happening. Ever.
And of course there is Buggy Lou, Jessie Sue and Wilbur. My nieces and nephew. JDRF supports research to identify those at risk for developing type 1 diabetes before it happens.
It's plain and simple.
JDRF funds research to prevent, treat and ultimately cure type 1 diabetes.
With your support of donations, forwarding on emails, posting this on facebook, reading this message, talking about me (in a nice way please), whatever it is you can do you are helping.
I cannot say thank you enough. It means more than you could ever imagine
Plain and simple.
Until next time--I'll be updating everyone on my participation in a human clinical trial. Exciting stuff!!
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