Hitting A Nerve: My Diagnosis Story... Please share yours


(Tegan) #1

The Faded Denim Dress:
As I sat on the floor next to my 3rd grade cubby, I carefully chose the thickest part of my tiny eight year old thigh, and pinched a few inches between my thumb, and index finger. “Does it hurt?” my class mate asked, as she intensely monitored my every move… cringing, wincing, squirming, knowing what was coming next. “Yes, of course, it hurts,” was the answer that came to mind, but instead, I shook my head, and with a down turned smile of sympathy “No, I’m use to it” were the words that came from my mouth.
I pushed the needle into my tender skin until I broke its first layer, injected myself with a roughly calculated amount of insulin, snapped the bright orange cap back onto the tiny syringe, threw my kit back into my cubby, and walked, with my slightly queasy friend, back to our elementary school’s cafeteria for lunch time.
My Mom tells me I was such a nervous child. Nervous and sickly… “you were scared of everything! Chronically anxious. I mean you were terrified of eve-ry-thing! I’m talking about two or three nurses having to hold you down to give you a shot. And Oh my God, loud noises. You seriously almost had a heart attack when the firetruck came to your preschool. I didn’t believe you’d be able to handle it…” —It’s been terribly hard being brave
It was the weekend before Halloween in 1996. My mom had taken my brothers, and I to stay at Lake Byrd Lodge, a spacious, wooden structure, built on the shores of Lake Byrd. “There was candy laid out for you kids all over the lodge,” my mom recalls to me. “Treats for Halloween. I didn’t notice anything funny about your behavior that weekend. You were eating a ton of sugar, but so was everyone else”
The following Monday we headed to my pre-school at Plymouth Congregational Church in Coral Gables, FL. My mom hadn’t remembered, but that morning was picture day… she was in a major tizzy about my less than perfect outfit. So, she grabbed me by my little hand, and dragged me to the church’s, “poor box.” As she shuffled through the pile of hand-me-downs something caught my attention, I was fixated on a faded denim dress. “This one,” I said to her, and she slipped me into the cloth I would remain in for the next seven days.
We stopped by my pediatrician’s office for a quick visit that afternoon when I came home whining about a tummy ache. After running some routine tests, Dr. Vega came in to our examination room visibly upset. “Do you or your husband have any chronic illnesses?” “No.” Mom answered. “What kind of diseases run in your family?” he pried on. “What’s going on here?” She questioned, “What’s wrong? You’re starting to scare me.”
When I arrived to the hospital soon after my blood sugar was in the 800s, the highest reading the Miami Children’s Hospital staff had ever seen. I was diagnosed with Type One Diabetes that day, when I was four years old
I remember being scared. I remember missing home. I remember all the people who came to visit. I remember my dad crying. And my mom being taught how to administer shots by practicing on an orange over, and over, and over again. But mostly I remember trick or treating through the pediatric ICU. That year I was a wolf.
I have never lived in a reality without needles, finger pricks, calorie counting, or portion control. It’s all I’ve ever known, and for that I am thankful. But as I’ve grown, lived and learned, navigated the complexities of life, I have realized the profound effect my diabetes has had on me, and how I’ve pretended for so long that it didn’t.
As a child the embarrassment I felt about my chronic illness was constant heartache. Like most young kids, I wanted so badly to fit in, not to be different, but I was, and I hated my disease for it, in turn I began to hate myself.


(joe) #2

@TeganLane Hi Tegan,

thanks for sharing that, I think what you will find is many people share that “thought I was going to die, went to the doctors and the blood sugar was high” part of the story. There is commonality in getting a cold or the flu, excessive thirst/urination and catastrophic weight loss, then a dx and typically a hospital stay. Mine is no different, sun poisoning was the only kickoff I can remember. I was 12-13 and it was very scary. Scariest was overhearing the doctor telling my dad I’d be severely disabled by 30. it put a real dent in my head and I was depressed for the next 20 years.

Anyway I found it interesting in the way you end off, literally the last 2 sentences, The entire way I came to acceptance and eventually grieved the loss of my good health originated in that hatred of myself and the shame of getting punished for an illness I didn’t deserve. After re-framing that hatred, it was the beginning of change for me. Change that would eventually lead to a new “friendship” with myself and discovery of the importance of self-esteem.

I’m 53 now, 40 years with t1 and I am glad to say that I exceeded the expectations of that hospital doctor.! as for that kid in the hospital, after I put my guns down I ended up working in health care and as someone who was supposed to be dead by now, hopefully have helped a few people along the way.

I hope your story doesn’t end where it ended, I hope you have found a way to have peace and acceptance. Good luck.


(Tegan) #3

Thank you so much, Joe!

You’re definitely a great example for me moving forward. With the help of therapy, which I think is vital in T1D care, I am learning to accept myself exactly as I am. The power of positive thinking has really started to change my feelings towards my diagnosis. It’s a journey, but I think I am on the right path!


(allison) #4

hi tegan,
my story started in second grade when my teacher emailed my parents saying that I was going to the bathroom a lot. so my dad made an appointment with my pediatrician and the day of the appointment was september 17, 2009. i got out of school at 1:30 and my dad picked me up and we went to the pediatrician. at the appointment they checked my blood sugar and it was 348. and they told us that i have type one diabetes and i had no clue what it was at the time and my dad couldn’t even talk. so then they told us to go to albany medical arts which is a huge hospital in upstate ny. we got to the hospital and they put an iv in me and they tried to get my blood sugar down. my blood sugar came down to 89. we ended up leaving the hospital that night which is rare for when people get diagnosed! i ended up having to NOT take any insulin for my first year and a half of having type one diabetes and just monitor my blood sugar! then i went onto a pen for 2 years and then onto a pump and i’ve been on a pump ever since! i currently have the medtronic 670g! i will have had type one diabetes for 10 years in september! i cannot remember life without pricking my finger and taking insulin! i hope this helps someone out!


(Alexandra) #5

That is almost my story. The only two things different is that I was hospitalized on the 4th of July in 1996 at the same age, and I have never hated myself though it was difficult. Instead I took it upon myself to help educate other kids using my doctor and the hospital’s resources. It helps at that age for a kid to know they aren’t alone.


(Andrea Roth) #6

Dear TeganLane:
May I post this story to my blog, please? Wonderfully written, it’s an essential benefit to read.
Sincerely,
A. K. Buckroth
www.mydiabeticsoul.com


(RichardV) #7

Hello Tegan, your story is much like mine, but still different because of the times we were diagnosed. I was diagnosed in 1945, when I was 6. Not much was known about diabetes back then, and the T1, T2 designations did not exist. Everyone diagnosed with diabetes used the same insulin taken from animals. My doctor told me to not eat sugar, and he taught my Dad how to give me shots. We used urine testing since there were no glucose meters during my first 40 years. I did not know about the possible complications I might have until I was 30, so I was not scared. I considered my diabetes an aggravation, and an inconvenience, but I never hated myself.
Now I have been type 1 for 73 years, and I am doing very well. I have some neuropathy in my feet and legs, but there are no other complications.
We can have long, healthy and happy lives with type 1 diabetes.
I hope you have had a good life, and that you do not hate yourself now.
IN ten more years you can apply for the Joslin 50 year medal. It is a very nice medal. Lilly, the insulin company, also offers a 25 and 50 year medals.
Good luck to you in the years ahead!! :slight_smile:


(Amber) #8

Hi there! Just joined here today, so why not start with my diagnosis! I am 25 and am fully resonating with the last little paragraph of your story at this exact point in my life, so thanks for sharing that!
I was 15, in my 2nd year of high school when I was at a pep rally with my friends and could not focus on anything. Vision was blurry, room was spinning and I felt like I was going to faint- I chalked it up as hunger and went about my day.
Over the next week or so I was waking 5-6x per night to CHUG literally gallons of water, only to urinate them immediately out. Insatiable thirst. Constantly.
I googled my symptoms and self diagnosed my self as diabetic, ran to my parents to tell them in hopes they would tell me I was crazy. They did. My mom burst into hysterical laughter “HA- Amber, not ONE person in our entire family history was diabetic”. This sufficed until I was baking cookies in Home Ec., tasting the batter along the way, and nearly collapsed onto the floor.
My dad made me a doctors appointment- but I couldn’t be seen for a few more days. When the appointment arrived, my dad and I sat in the room and talked with the doctor about how I had been feeling- this triggered a urine test. We were told to hang tight for 5 minutes and he’d be back with results.
We sat there for an hour. Laughing at this point figuring the doctor forgot about me and that it must not be anything major. Literally putting on my jacket- the nurse comes in and orders us to drive to the local trauma center as fast as possible. I was diagnosed that moment with sugars over 600 and would be hospitalized for 2 weeks and out of school for 2 months proceeding.
I had a stomach bug about a week prior to this all starting- the doctor’s said this would be the only explanation for the sudden onset as I was 100% healthy otherwise with no family history of the disease. Claimed that cells in my body working to fight off the infection got “confused” and in turn killed all of the insulin making cells in my pancreas… yay!!

So there’s that! Obviously much more to my diabetes story but that covers the diagnosis lol I am now at a point in my life where I am struggling to find balance. I either am super on top of things or completely drop the ball- obviously a recipe for disaster with diabetes. If you ever want to chat feel free to personal message! I’ve learned being open and discussing my condition has made it a positive thing versus a negative one!


(joe) #9

@amberaalonzo Hi Amber, welcome to Type One Nation. lots of us go through periods of “burnout”, it’s common… esp when we’ve had diabetes for more than 10 years. hope you are ok!