Her Secret world - Living with Type 1
WHAT YOU WILL SEE.
What you will see is a girl that wants to be normal. She will roll down the hill with her friends, jump in the pool, and laugh loud as can while she bounces on the trampoline. What you will see is a girl that is busy with her schoolwork, arts & crafts, who is making silly faces at her baby brother and chasing her sister through the house. She is strong and brave and you may know she has diabetes. But she's normal too. She's her normal.
You may catch glimpses of what she does. She won't make a big deal when she is having a sugar low. She will just make her way to her snacks and take care of it. She won't tell you when her blood sugar is high. She will just grab her remote and fix it. And if her site goes bad she will make her way to a private place and change it. She checks her blood sugar when needed with no shame but no words. She may share with you or answer your questions if you ask. Sometimes there are storm clouds in her eyes or her emotions are on her sleeve but you think it's just her personality and thats ok with her because these emotions ARE part of her, too. She's brave & happy and she has dreams. She's quirky and not always easy to read that's why I call her my rainbow.
She's a ray of sun, a good friend and a hard worker. She's her dad's shadow and her moms helper. She smiles and she laughs and that's what you see. But there is a hidden world and in the name of diabetes awareness I will reveal a little bit of it. This isn't to complain, this is to explain what type 1s go through and share a bit of their secret life.
REVEALING A GLIMPSE OF HER SECRET WORLD
Make no mistakes, both sides are real. She is so much more than what she has to do but what she has to do IS part of her. I will explain the algebra she does each day, the Jeckle & Hyde of emotions and chasing the invisible monster. I will tell you about the physical and mental battles and how she fights. And this is only really a glimpse into her life from a parent perspective.
CHASING BLOOD SUGAR
A big part of the life of a T1 is chasing a monster that relentlessly stalks them. My girl chases it with blood sugar checks, CGM device and insulin. Her blood sugar is different every minute of the day and many factors drastically change it. She isn't perfect but how many other people have to think for their pancreas at all times? I think she is amazing.
Why does she chase her blood sugar ? She tries to keep her blood sugar a normal range because when it's higher than normal it damages organs and creates havoc in her body. Extreme highs can cause her body to be toxic or go into a coma or even worse. When it's lower than normal the body can't function properly and of it goes too low it can be instantly life threatening. Constantly doing the balancing act is her secret world because a lot of thinking, calculating and chasing is going on. Blood sugar changes constantly and this is no exaggeration and she CHASES IT, stalks it and thinks about it ALL the time.
WHAT YOU WON'T SEE
What you won't see is her looking at her food and trying to calculate how many carbs each bite has so she can match it with insulin. Sometimes she reads labels, sometimes she weighs or measures food, & sometimes she uses her judgements based on what she knows and the past. You won't see her adding and subtracting insulin calculations based on her number, her upcoming activity & other factors. But she does. Sometimes she has to drink or eat when she is not hungry and sometimes she is hungry but her blood sugar isn't in check and and has to wait or limit it until it's better.
Every time - every day - this is her normal but most of this is quiet and hidden. She's an Algebra Genius when it comes to her blood sugar. Well, except when she's wrong and then she just keeps correcting and waiting until she gets it right. The hidden part of this is all the thought that goes into it.
ANOTHER PART OF THE HIDDEN WORLD...
Another part of her world that stays hidden is the Jeckel & Hyde of emotions that toy with her. On a hormone roller coaster, there is no denying just as the blood sugars go up and down so do her emotions. She can't help it so all she can do is learn to deal with it to the best of her ability. She won't tell you she was low 3 times last night, that her head was pounding and and was she was shaky. She won't tell you how cranky or confused diabetes can make her. You won't know the after effects of lows and highs that occur daily. She won't tell you that she feels terrible or like a train wreck sometimes.
She has just accepted that she must do her best no matter what she feels. You won't know that her blood sugar ran in the 300-400s for hours because of her site going bad or fighting a cold. Those highs make her feel terrible but she still has things to do, classes to attend and it won't stop her. She will NOT use it as an excuse. But she does feel bad sometimes and usually her eyes will show it.
As her parents, we encourage her to push through and live her best life despite how she feels sometimes. But my compassion still runs deep and I like her to choose how she deals. It's her life and I can not bare the full weight of her MONSTER no matter how bad I want to take it from her. ThIs is one battle I can't fight for her although I can do is my best to support her and help her through it.
PHYSICAL AND MENTAL BATTLES
Her physical battles choke me up a little bit... All the the constant needles, attachments and scars make me take a deep breath. She's only 11 and her tummy, arms and fingers have war marks. Her stomach is scarred and her fingers have visible holes. She never gets a break. She NEVER gets a break.
She will never tell you this bothers her. This is part of her secret world and her new normal. She has no complaints. This Type 1 Diabetes monster is beating up my girl on the inside with every high. The damage is hidden. It's remains secret for now and I can't allow it to overcome me.
She won't tell you that she's worried and deep down as long as she is doing her best I don't want her dwelling on this. Her legs get sores that don't want to heal and her feet and joints bother her sometimes. Simple things like toenails can cause her problems because infection leads to higher blood sugars. She gets aches and pains and all I can do for her is tell her I'm sorry. This is her hidden world and sometimes there are lots of physical pains. And when she gets sick, well, that's a whole different set of equations that we have to deal with to keep her safe & healthy. Things can be serious so we have to be extra cautious.
She won't tell you that even though she had the courage to run cross country this year that a few of those days her blood sugar ran so high that she came home and threw up. She has her own secrets and reasons why she doesn't share. She wants people to see her for what she is and her strength and she doesn't want diabetes to be an excuse. But sadly, diabetes is sometimes a reason even if she doesn't say anything. And I agree, we have to stay focused on the positive even when the negative is there. We try not to give our energy to the things we can't change but rather focus on what we can do.
THE MENTAL BATTLES ARE HERS.
The mental battles are hers and I can not even reveal all those secrets. But how I know she hurts when people mix her diabetes up with lifestyle and act as if she can do something to make it go away. When people think she has a diet or weight or self control problem, it's then I can only imagine that the burden can feel heavy to her. I see it in her eyes. But she won't tell you. She has learned to accept many people won't understand and to do the best she can to educate them and then overlook them. Many people think she can control this type of diabetes when the truth is all she can do is manage it. She knows who cares and what is important. She had to mature and become independent very young.
My girl has many sides to her and they are all real. Today, I wanted to share the some of her hidden world for all the type 1s who hold their heads up and move forward as if what they do is no big deal. Because these people may fight everyday and you may never know it. They want you to see the best side, the positive side and the happy side because they are more than what they have to do to survive. And they are uplifting and do bare their own burdens often.
You won't see most of the battles. You can only glimpse into their hidden world. You can only imagine. And yet, how is it that T1s have more courage, more endurance & the ability to inspire even more often than could ever be expected? They don't want to burden you with their problems but rather they just want a little understanding sometimes. T1s are warriors in a battle against their own bodies against an Invisible monster that leaves visible damage. And still, this won't get them down. It makes me want to be a better person.
Does this reveal things you didn't know about type 1s?
Three years ago tonight - my daughter received her first insulin shot. Not a day or even a stretch of more than a few hours has ever passed since that she hasn't needed constant needle injections/ or her pump or finger pokes. And while this saves her- and we are ever grateful- this disease has changed our lives forever.
Every day - she is strong -Still, she calculates her foods - changes her injection sites - pokes her fingers - wears her CGM- fights mood swings - highs and lows or battles some type of diabetic situation.
And yet, it's normal, our new normal. She has such a great attitude and she just does what needs to be done while doing her best to inspire others to do the same. This is a family disease- I wish I were as strong as she is.
So one night- November 22nd- I find myself just being a mom who cries for her baby. My heart remains tender and I never want it to harden. So I allow myself - this day to grieve - to imagine her without diabetes - to remember her before diabetes.
Never once am I ungrateful of what a gift she has - insulin - tools- and the will to fight but I am her mom and since she is my baby- I allow myself to be vulnerable even if just for a moment.
Tomorrow - back to "normal." Tonight I just may cry.
Kayla Perry- Great Papa Claude & Jada Perry
What an amazing response of comments and stories I received after this posted on AOL news! Please keep the inspiring stories coming! Here are just a few after this article posted; http://www.everydayhealth.com/columns/my-health-story/a-new-life-with-type-one-diabetes-jadas-story/ Hi Kristie, Wanted to take a second to send you an email. Just saw your article in Everyday Health; very well written, reminded me of when my son Alex was diagnosed with Type-1 back in August of 2012. Alex blogs and does videos over at his site, www.alexcomics.com; he has a big writeup of how he came to be diagnosed and a video where he talks about Type-1 for the ADA ride (he has a bit of a pet peeve about the misunderstandings that exist over Type-1). ...... Personal note shared here..... Thanks so much for sharing Jada's story; I'm going to pass it along to Alex, because he always likes to read about other young people who are living with Type-1. I've been living with Diabetes for over 35 years has been challenging but in some way's uplifting. Would I chose to have Diabetes, no but as my father said to me so many years ago "look around you can always' find someone in far worse shape". Please let Jada know she is not alone in her fight and I will be thinking of her and wishing her the best as she continues her battle and let's hope and pray we/they will find a cure sooner rather than later. Bless you and your family and thank you for what your doing the more exposure we can bring the better. Cheers, Jason Schmidt Hi Kristie, I discovered your blog through the AOL homepage. I have a 13 year-old sister who was diagnosed with diabetes three years ago, so I thought I'd share my family's story. I know you asked for stories from parents, but as a sister of someone with T1D, who is also studying pre-med in college, I've found it interesting to sort of see both sides of the story simultaneously. I thought I might be able to provide a unique perspective: This October was the three year mark since my younger sister was diagnosed with type 1 diabetes. It was a month before her 10th birthday. She had been complaining about always being tired for quite some time, but we had thought it could be due to a lack of sleep, lack of healthy food, or a high level of daily activity. However, she then began to use the bathroom more frequently than normal. My mom decided it was time to go see the doctor. It was fall break of my freshman year of college, the first time I had been home to see my family since I started college. I was at my high school’s football game, and I got a call saying that my parents needed to take my sister to a larger hospital, about an hour away, to get a better look at the problem. A little while later, the diagnosis of type 1 diabetes was made. Her blood glucose level was 460 at the time. My sister is always on the go, spending a lot of her time playing sports, acting in plays, or hanging out with friends, so it was difficult at first to figure out the correct balance of carbohydrates and insulin. There were many times in the beginning where my sister had to be pulled from her soccer games because her numbers were either too high or too low, both of which resulted in a noticeable sluggishness on the field. This proved very frustrating, and at times, embarrassing for her because she was constantly being pulled off the field to test her blood sugar when all of her teammates only had to focus on the game. It took a good portion of the season to figure out a good balance of simple carbs, proteins, starches, and insulin that would keep her going throughout the game; however, it still remains to be perfected. It is such an intricate process to determine, since so many factors, such as the outside temperature, her stress levels, and the levels of activity both before and during the game impact her numbers. Puberty has brought on challenges of its own; however, the insulin pump has made this much more manageable. My sister's diagnosis was understandably difficult for my parents, but now it is just a normal part of the day. When I was home from school, I joined my parents to sit in on some of the classes that were required to help us learn to manage the blood sugar levels. It was difficult to focus on these classes so soon after receiving the diagnosis, but it was important information for us to hear. I cannot end this story without mentioning how amazing my sister has been through this whole process. My parents were visibly upset, but I never saw even a glimpse of fear or pity in my sister's eyes. A week and a half after her diagnosis, she was already giving herself shots and figuring out carb counts and the amount of insulin she needed. I admire my sister's strength through the process because even today, I don't think I would handle such a thing as well as she did at 9 years of age. At the time, it was difficult and overwhelming; however, at this point, it has become much more routine and manageable. Despite the bills, the worrying about glucose levels, and the preparation required at all times, it is comforting to know that there is a treatment available to those with T1D, especially when so many other diseases/disorders/ailments still lack a reliable treatment. Here are some of the things that helped us get through the initial shock and are still great reminders, even today: 1. T1D has a reliable treatment! Treatments continue to become better and more advanced. The continuous glucose monitors and insulin pumps are already able to mimic (in a more simple form) the activities of a healthy pancreas! Imagine how much researchers will accomplish in the next couple of years! 2. Eating healthily, watching blood sugar levels, and exercising regularly will greatly reduce the chances of experiencing the negative effects of T1D. 3. Being more health-conscious will not only help the person affected by T1D, but it can also help the entire family. Get everyone involved, and you can all become healthier together. 4. The artificial pancreas is currently being tested in outpatient trials! This is a great step toward the further improvement of how people with T1D are able to control their blood glucose levels. 5. People with T1D are not forced to give up doing the things they love. They can, and are encouraged to play sports, exercise, and do anything else they want to do! It might take some initial adjustments, but there are countless people who have achieved great goals despite their diagnosis. My sister was particularly interested when she found out that former Philadelphia Flyer Bobby Clark, musician Nick Jonas, and even a coach at her school have each been diagnosed with T1D. Best of luck with your daughter and the rest of your family, Laura Kristie...I happened upon your site, Beautifully Broken Pancreas, today and read your daughter's story. The emotions you felt were reflective of those that my wife Tami and I felt when our son was diagnosed on December 22nd three years ago. It was the worst day of our lives. Through the grace of God, our son was immediately able to "embrace" this disease as his new normal, as he told while in the hospital. He is just about to complete his first college semester and is doing well. We are very hopeful for a cure especially after visiting and touring the Diabetes Research Institute in Miami, Florida. Click here: DRI & DRIF: Cure For Diabetes There are, as you probably already know, over 30 separate labs in this building with only one goal which is to cure this disease. It was an incredible and comforting visit knowing that there are so many researchers all working to the same end. Tami started a charity last year called Help A Diabetic Child Inc. www.helpadiabeticchild.org whose mission is to purchase blood glucose testing supplies and insulin for kids who are in financial distress. As you are well aware, diabetes is a costly condition. I never realized just how many children are going without supplies due to lack of finances...it is truly heartbreaking. Would it be OK with you if we add a link to your site on our website? Joe Balavage Help A Diabetic Child Inc. 239-821-2296 www.helpadiabeticchild.org dear kristie, just to let you know, I had almost the same experience at you. my daughter was 9 and she had the same symptoms. I was taking my older daughter for a physical and asked the doctor if i could bring my little one in for a checkup as she was not feeling well. not expecting a diabetes diagnosis (never knew anything about the disease) i was in complete shock. we spent a week in the hospital together. now my daughter is 25, a beautiful and intelligent young woman who is in total control (most of the time) of her diabetesand is very diligent in caring for her disease. of course, there are ups and downs and there always will be but she does the best she can. i always try to think of the brighter side and thank God it wasn't anything worse. i'm sure your daughter will be fine as long as she does the best she can. i know all too well the pain you are feeling - i went through all the pain also, but that has subsided. i even spent many years when she was diagnosed testing her as she lay asleep. (they didn't have the tools that they have today). until there is a cure, we can only hope for the best. God bless you, your daughter and your family & happy holidays. Best Wishes, Pat Comment I am the mother of a beautiful 41 year old daughter who was diagnosed in 1976 at age 4 with type 1 diabetes. Deanna was the youngest of my four children. She was diagnosed in the emergency room and then hospitalized with blood surgars over 500. It was a miracle she was not in a coma. After the initial shock, learning to care for her, she was released seven days later. We did not have blood testing kits, etc. at that time. It was very difficult at that time to have accurate counts, but as the years went by we were able to use the newest technology. Deanna's diabetes though at times was very demanding she never let it interfere with her life or participating in school activities, fun times with friends, marriage and two beautiful children. Deanna keeps fit, eats healthy, works full time. I just want families to know that children living with diabetes 1 has its challenging moments, but when you see how far they can go and live a healthy happy life, it is an amazing gift. I am so proud of my daughter Deanna and all she has overcome in her life. I hope these few words will help other parents know that with the love and support of your family and doctors your children will thrive as my daughter has done. I still hope and pray for a cure so that one day my daughter and so many others fighting this disease will enjoy life without diabetes.Thank you for sharing your story with so many people. Mary Lou Ferrel
2013 ADA STEP OUT WALK IN NASHVILLE, TN.
......TO RAISE AWARENESS! NOVEMBER IS DIABETES AWARENESS MONTH.
The American Diabetes Association's STEP OUT WALK at Centennial Park in Nashville, Tennessee was another success! What a great way to show support and raise awareness for diabetes! Jada's Ninjas had a great time again raising awareness.
Each November- We do remember.
Three years ago on November 22nd, I made my way to the doctors office with my 8 year old and her 11 year old sister. My 8 year old little hazel eyed girl that had been up all night feeling terrible with what I thought was a bad bladder infection. We stopped for an early lunch and got a sub sandwich and a cream soda.
The circles around her eyes had been there for weeks or maybe even months as she had not been herself for some time. I didn't know what was wrong but my sister-in-law had said that we should ask for a diabetes test because she had been thirsty and going to the bathroom a lot. Sure, I will ask I told her and did just that. Thinking to myself- we are healthy so I'm sure it's no big deal.
After the finger poke they came back for another and a few minutes later came back for a blood draw. By this time, I realized the nurses were not looking at me directly but rather silently sending me a signal that I didn't understand. I asked what's her blood sugar was and the nurse said it was 427. In reality, I didn't know if that was good or bad so I asked what was normal and she said 80-120. My heart sunk.
I stared at my girl as my emotions began to run wild. But Jada, she just sat there looking sickly but content and quiet and my older daughter was just ready to leave but none of us fully understood what was to come.
What did this mean? I had been texting my husband through the process and also posted on FB asking what does a high blood sugar off 427 mean? Immediately, a friend replied to me via text & a call giving me info that I craved and my husband headed our way because I told him it was serious. The doctors came back and said they were contacting Vanderbilt Children's Hospital now to see what the next step was. But the bottom line went kinda like this;
Your daughter is diabetic. What? Did we eat too much sugar because she just had lunch ? No it's not like that, she didn't cause this. What does it mean then? Will she have to a shot? Shots. Plural. Always. She's will need insulin ASAP. She would have went into a diabetic coma if we didn't catch it now. A person can't go long like this. We can't answer your questions that's why you have to see an Endocrinologist. And honestly, they really told us very little.
And the world-wind began! That night Jada received her insulin shot right in her stomach. I cried and she says she did too but all I remember is her brave face. Daddy's tears were real too but after that he did his crying in the shower mostly. The next few months were life changing as we worked hand in hand with doctors, nurses, dietitians on learning all we could to keep our girl healthy and alive.
Never has a day passed since that her little body hasn't had multiple injections or finger pokes. Once I calculated the first year and it was crazy. She had an average of 5 shots a day at the time and about 6-10 finger pokes which was about 1,825 shots and well over 3,000 pokes the first year. It's mind boggling! My baby - my sweet little baby - having to fight like this..
Time revealed the what was happening and we learned so much those first few months. We learned her pancreas was sputtering insulin here and there but that eventually and in a fairly short period that all the cells that produce insulin would be killed off because once type 1 begins - it does not stop. She was insulin dependent for life and there was no cure, no diet, nothing that would change it. We accepted this but not easily. And not quickly, either.
We became ever grateful for the gift of insulin even though we can hope for more - we can hope for a cure and at the same time we can be thankful for our daughters life no matter what the cost.
Some things have changed. Now she uses 2 permanent but removal devices 1. An insulin pump that she changes every 3 days and 2. A Dexcom sensor that detects her blood sugar and charts it every 5 minutes. Her finger pokes are about 2-3 a day because of the sensor that stays in.
Looking back, all the signs that her body was under attack was there but I was clueless. Her thirst was unquenchable, she would be walking and just fall, she continuously had to go to the bathroom, her emotions were all over the place, the circles around her eyes were dark and deep. Did I mention her emotions were out of this world? She wouldn't stay at Girl Scouts, she would cry or be angry for no reason. I thought maybe it's a phase and that she was overreacting to silly things. She had been so hungry and thirsty and yet had lost over 10 pounds. Why didn't I put it together?
I'm not going to say it's not the hardest thing we have ever been through or that it will ever go away but it does get easier. It gets more manageable- not the disease but how you deal with it.
Looking back, these 3 years have had a lot of ups and downs and although diabetes is always present it doesn't keep my daughter from living her very best life. She does camps, clubs & sports and this year is working hard on excellent grades & she is playing trombone. She is now a big sister and I know she will be a wonderful mom one day. She is the bravest person I know. She has vowed to do her part to educate and speak openly about diabetes to help advocate for all the voices that need to be heard. I can say she is my inspiration & a fighter and that all diabetics have a special place in my heart because of a compassion I have found for them.
So why do we remember where it all started in November?
November 21st would be the last day she would ever go without having to inject or think about calculating or chasing diabetes. Some joys ended but new ones began. November 22nd marked a new beginning with a heart full of gratitude. It's another year I got to spend with my beautiful daughter with no major complications. It's another year to fight & live & love for her and with her. And so each Thanksgiving is a little more special because although she fights diabetes, diabetes doesn't win. She is so much more than this disease.
Jada & Jason Perry. These two make a great team!