A Journey with Type 1 Diabetes

Today I’m excited to have my first guest blogger share a story that’s near and dear to her heart. Kim Gordon and I met in college and were music majors together. Our friendship has only grown stronger in the many years that have passed since graduation, and I’m excited to introduce her to you today as she sheds some light on a health issue that affects so many.

JDFR 

Most of you will not be surprised by the fact that I have Type 1 Diabetes (T1D). (Although I am shocked when people I have known for a couple years notice my insulin pump for the first time.) I want to share my T1D Journey with you. This coming September will mark 25 years since my diagnosis. I have signed-up to participate in the Juvenile Diabetes Research Foundation (JDRF) One Walk on October 21, 2017, in honor of my journey with diabetes. I count it a celebration because the Lord has sustained my life throughout this time, and He will continue to do so as I journey on.

As you read my story, please do not feel sorry for me! That’s not the point! My disease is treatable. Tough? OH yes, sometimes so frustrating and hard to figure out. But I want you to understand where I’ve been and how far I’ve come: to see how far medical science has helped change my life. I was in high school when I realized that if I had been born just 50 years earlier, I would probably have died very young and quite possibly very painfully. I want you to understand the life of a Type 1 Diabetic so that you can see why finding a cure is so important to me and many others!

My journey began in 1992. I was just living my 7-year- old life, preparing to start 2 nd grade, and enjoying one last summer hoorah with my family. We were headed to Savannah, GA for a few days of fun before school started back. My sister and I were prone to UTI’s and, low and behold, on the way down, I started showing signs of yet another UTI (with no public restrooms to be found along the country backroads). As any wonderful parents would do, mine stopped and purchased some cranberry juice to help rid my system of bacteria. I chugged it for a few days until we could get back home to see a doctor. I was also thirsty non-stop, but this made sense with all the sugar in fruit juice, right? So, we made it back home and started a new school year. On Friday of the first week back, I was still just not feeling well. My mom worked at my school, so she called my dad to come get me and take me to the doctor. Her “motherly instincts”—and, I believe, the Lord—led her to have our family practitioner, Dr. Pennington, test my blood sugar. Just as she suspected, my blood sugar was a good bit elevated: two-hundred and something. I don’t really recall what happened right after that discovery, but what I do
remember, was that, before long I was being admitted to the children’s floor at NEGA Medical Center.

Unfortunately, as my mom likes to point out on a regular basis: WE HAD NO CLUE WHAT WE WERE DOING! I was 7 years old, due to turn 8 the following month. We didn’t know what a Pediatric Endocrinologist was—at least I certainly didn’t, and we didn’t have Google back in those days. We were paired with an Endocrinologist in Gainesville who was not accustomed to juvenile patients. He admitted me to the hospital—something we later learned was not necessary. I wasn’t comatose, or even close. Again, we didn’t know. So I spent a night or 2 or 3 in NEGA learning about counting fats (yes, fats!), giving myself shots, “sticking my finger” (aka testing my blood sugar), and living life with diabetes. Whatever that meant!? (I also learned, at about 1 o’clock in the morning—when I couldn’t sleep because I was home sick—that men could be nurses, too! Ask my mom sometime how embarrassed she was during this discovery of mine!)

The evening I was discharged from the hospital, we immediately went to join my sister and the rest of my dad’s family for a cook-out. People felt badly for me of course, and with me already being the baby of the family, I was no stranger to being petted and doted on. I vividly remember my mom silently scolding someone who told me “sorry” to my face. I honestly didn’t realize that it wasn’t very common for 2 nd graders to have diabetes. It was just normal to me because my parents and the doctor always presented my situation in a very matter-of- fact way. And the reality is, that mindset has probably spared my life in many ways. My parents supported me tremendously, but diabetes was never an excuse to seek unnecessary attention or exceptions. Which leads me to my next point: I have always been supported on this journey.

The greatest support of all has come from my parents. My mom likes to refer to herself as “The Old, Mean Mama”. I didn’t fall into pity parties often. I have always been happy-go- lucky and enjoyed life to the fullest, but there were some tough times. I remember in 2 nd grade a boy laughed at me because I couldn’t eat the icing on a cupcake. Not a big deal, but when you’re already frustrated with your situation, it’s like the last straw. After a nice, long talk, my Old Mean Mama told me I had a few minutes to cry and then move on. Because, “Kimberly, if you cry and feel bad for yourself will you still have diabetes? Yes, you will. So cry and get it out, and move on with life!” Little did I know, she promptly
went to her room, shut the door, and had a good cry herself. My dad always put on a supportive face in front of me, but later in my life I have learned that he also struggled a good bit himself. He told my mom that I wouldn’t have to “do this forever”: meaning finger pricks, shots, etc. After all, “It’s 1992, Susan! There is something they can do!” Well, it’s now 2017, and I’m still doing a good bit of the same therapies.  I can remember my mom fussing with insurance companies over the phone, getting up at all hours of the morning – every 3 months – to drive me to Egleston for my check-ups so she could get
back to work for half a day, searching for insulin in the middle of the night in a town with NO 24 -hour pharmacies, searching for strange sizes of batteries for my first insulin pump, being chased by a cop when she was speeding to my aid in 6 th grade, making-up and altering recipes to be “sugar-free” so I could enjoy close to normal treats, and everything in-between.

I hate to start giving shout-outs because I know I’ll miss people. To my sister, who has always been my defender, comforter and second mom (only when she feels she HAS to be, which she still does today), has been willing to support and help me in any way she can. Well, almost. I don’t think she has ever put a needle through my skin. She has always come to my rescue with low blood sugar in the middle of the night and short-lived pity parties…even at the age of 32. (Sorry, Mama!) There were pharmacists and pharmacy techs who ordered the uncommon meds I had to try. My 3 rd Grade teacher, Mrs. Burns, kept “50/fifty” candy so that I could have similar treats with the rest of my peers. To the school secretary, Mrs. Nancy, in 4 – 6 th grades, who kept all my supplies in her office and would call my mom and give her updates to my high and low blood sugar surprises…something she certainly was not trained or paid to do. My church leaders who took me on trips without fearing the worst. My family and my friends’ families who trusted me to take care of myself and invited me to sleep-over and on trips, making sure
they had diet drinks and sugar-free treats for me.

The greatest part of my writing this is to give credit and glory where it is due! Ultimately, to my Heavenly Father, who has sustained me these 25 years…well, really all 32 ½. I have not once passed out due to low blood sugars (in fact I have woken up from a dead sleep and registered 12), I have never been in a coma or even close—not even an episode of ketoacidosis. I currently have no known damage to my eyes, veins/arteries in my legs or near my heart. I also have no known nerve damage in my extremities or anywhere in between. I am blessed—blessed beyond measure! And I do not boast in my own power and strength, because I know that these are all gifts from the Lord!

Has diabetes changed my life? Oh, yes! In many ways! If you did not have the pleasure of knowing me as a young child, you should know I was a QUIET child—especially in public. Shocking, I know! I spoke only when spoken to (because my parents wouldn’t let me be rude), and most of the time I was a nervous and easily frightened child. I was fairly obedient, and always wanted to follow the rules—i.e. didn’t talk a lot out of turn or when I was in class. Again, shocking! So if you ask my parents, especially my Mama, they will tell you that diabetes truly turned me into a different person. My mom says I haven’t stopped talking since we left NEGA on Labor Day in 1992. Sorry, not sorry! I had to learn to speak up for my needs, which has helped me learn to speak up for others. I had to be more responsible at a young age in order to care for myself and keep my body healthy. I can fill in my name, DOB, SS#, and all my ailments and medications for medical files in a matter of seconds! The list could go on…

Do I have fears about the effects of T1D? Most certainly. I fear the things that are yet to come. Many of the negative effects of diabetes don’t rear their ugly heads immediately. The reality of this disease is that it can slowly and silently cause damage not immediately recognizable to the human eye. I fear that I should not become pregnant (which at the rate I’m going with marriage—or the lack thereof, this may never be a problem!) for fear of losing my vision, kidney function, or even my life. I fear eventually losing fingers, toes, limbs, sensations, kidney function, having a heart attack or stroke, etc. I fear that my family may one day have to care for me when I should be caring for them. I’m a fairly fearful person, so I won’t continue with listing my fears because regardless of what happens to this body of mine, I have a hope that lasts beyond this life. Part of my story includes the fact that I am insulin resistant. I have a condition called Poly-Cystic Ovarian
Syndrome. One of the major side-effects of PCOS is insulin resistance. So I give my body insulin through my insulin pump, but my body does not use it properly. If you are familiar with the endocrine/hormonal systems of your body, then you know that when one major organ goes…more will usually follow. At the age of 7, we discovered my pancreas was no longer functioning; in my early 20’s I was diagnosed with PCOS; and at 25, we discovered my thyroid was UNDER-active. Of course it was, because over-active
would’ve just been too convenient. All of these factors play major roles in weight gain and retention. This is why my weight has been and will be a constant battle. I like to say if you just looked at my medical charts, you’d think I was 65 years old. And then I laugh, because sometimes you just have to!

Where did my Type 1 gene come from? My Granny Ruth. My daddy’s mother was the mother to 8 children, and she was diagnosed “Type II” because of her age (she was over 18 years old) in the early 60’s. BUT, she was insulin dependent until her death at age 68. After her death in 1998, the medical world determined that you can be over the age of 18 and still have Type 1 (insulin dependent), and you can be under the age of 18 and have Type 2 (not insulin dependent). My first cousin, Josh, was diagnosed with T1D at age 24. We most likely inherited the gene from the same place.

T1D is an expensive disease. Without medical insurance, and my wonderful family, I would be in debt up to my ears—or in poor health. I have gone without medical insurance only for a few months since 1992, and those were some trying times. Yet even in those days, God sustained me, and I never went without ONE thing that I needed. Ever! Did you know that one blood sugar test strip costs over $1? One test strip. Most T1’s use 4 – 5 daily. My 3 month supply of insulin without insurance is over $2,000, and the Symlin injections I take 3 times daily to help my body correctly use insulin would be over $5,000 for a 3-month supply. This is another reason why I have chosen to raise money for the JDRF. I may never see a cure for diabetes in my lifetime, but I would love to help provide hope for the generations after me. Hopefully we will soon see fewer and fewer children and adults be insulin-dependent diabetics. Maybe one day a 7-year- old will get the diagnosis of T1D, but she will undergo one procedure with many needles and tests for several days, and then the rest of her life will be “normal” and mostly needle-less. Maybe one day, someone will get a T1D diagnosis and pay a few large medical bills up front and then move on with life without 100’s of them.

Again, I just wanted to share my story. I’ve never shared it publically – mainly because many people have far more severe diseases that aren’t even treatable, much less curable – and I don’t want pity or pats on the back. There are those who are in far worse situations than me! Please DO NOT feel obligated to make a donation to my JDRF One Walk fundraiser. There are many causes that we all feel pulled and obligated to give to. Please don’t feel that way in this case! If you are able to donate please follow this link:

Kim’s JDRF One Walk

AND if you want to join me Saturday, October 21st for the Atlanta One Walk to celebrate my T1Diaversary, sign-up at:

JDRF Walk Georgia Chapter 4147

and I will see you there! (When you register, you can make your donation/fundraiser amount $0 with no problem at all!) *Also, if you are going to walk and would like to be included on a t-shirt order let me know that as well! 

***The following is just a friendly PSA based on my personal interactions with well-meaning people. The statements are TRUE, but if you don’t have a great sense of humor you should stop reading here.***

Things I wish people knew and understood about the ‘betus:

1. “Sugar” is not a disease. Sugar is a compound. No one can medically be diagnosed with “Sugar”. It’s called Diabetes… Type 1 or Type 2. I do not have “sugar”. I have Type 1 Diabetes.

2. Diabetes is not diagnosed based on a scale or stages. There is Type 1 Diabetes, and there is Type 2 Diabetes. That is all. For instance: If a person is diagnosed with cancer they may have Stage 1, 2, 3, or 4. Diabetes is either controlled or not controlled. I want to laugh out loud when I hear someone say, “Did you hear about Blanche? She has ‘dia’betus REAL bad!” Well, Blanche may have Diabetes, but she either chooses to do what it takes to keep it under control or she does whatever she wants and does not care to take control of her disease.

3. Type 1 and Type 2 Diabetes are two DIFFERENT beasts! I know my body type is listed as “more to love”, but I could lose every inch and ounce of fat on my body, and I will STILL have T1D! Walking is an excellent activity, and it does help reduce blood glucose levels. Just know that I could walk the distance around the globe 3 times, and I will STILL have T1D. If you have Type 2 Diabetes please do NOT boast of your 4.7 and 5.2 A1C’s to those of us with T1D… we are NOT happy for you (only in your moment of boasting, but we will eventually be reminded of our happiness for you and your excellent A1C), and our diseases are a good bit different from each other. Some of us T1’s work diligently for 7.0 – 8.0 A1C results.

4. If a Diabetic has seen a medical professional or has simply Googled their disease, they know what they can and cannot eat (The real question is SHOULD, and we can all ask ourselves that question). We do not need the “sugar police” at church, family, or friend gatherings watching what we put on our plates or in our mouths. There are sliding scales that we use to determine the amount of insulin we take for the amount of carbohydrates we eat (different for every person)…therefore, with insulin intake, the only difference is the number of carbohydrates we eat. For example: a small apple, a slice of bread, and one regular size Reese’s cup share similar carbohydrate counts. You would take nearly the same amount of insulin for either of these 3 choices.

5. Diabetics were not asked who we wanted our television spokesman to be, but if they had taken a poll we would still have voted Wilford Brimley as the one to remind us: “Check your blood sugar. Check it often.”