Forty Days of Diabetes - Day 13

T1D - What's it all about?

Type 1 Diabetes is an autoimmune disease in which the pancreas can't make insulin because the immune system attacked it and destroyed its insulin producing cells. In autoimmune disorders, the immune system mistakenly attacks the body's healthy tissues as if they were foreign invaders. A severe attack can interfere with the function of that body part. Doctor's still aren't really sure why autoimmune disease occurs, but genetic factors are thought to play an important role.

People with Type 1 Diabetes are at risk for other autoimmune problems, but these disorders are not actually caused by the diabetes. Celiac disease, a disorder which interferes with the intestines ability to tolerate the protein gluten, occurs in about 1 in 20 persons with diabetes. Thyroid disease will affect about 15% to 20% of those with diabetes.  Addison's disease, a type of adrenal insufficiency, is a rare disorder which occurs about 5 times more often in the diabetic population.

So in addition to the constant checking, counting, managing, we screen our children every year for celiac and thyroid disorders. And we keep our fingers crossed while waiting for the results to come back in our favor.  

Forty Days of Diabetes - Day 12

Can I.........

Can I go to the school dance? Can I go rollerskating with Riley? Can I join the cross country team? Can Caitlin sleep over? Can we take Caitlin to the beach? 

Innocent requests. Three years ago yes would have easily slipped off my tongue.  Now it takes a little more effort. What does she need to bring with her? Will she be safe? How much information do I give the parents or friends or coaches that she's with? How old is her pump site? Does it have enough insulin in it? 

The first few times were especially difficult.  I dreaded the moment she'd hand me that little unmistakable envelope. An invitation to a party. I asked myself early on, "if she didn't have diabetes, would I say yes?". I've lived by those words ever since. It's not always easy or stress free but I will not let diabetes rob her of the joy of being a child. Every outing comes with a little extra planning, a little extra baggage. But in the end she has diabetes but I will not let diabetes have her.  

Forty Days of Diabetes - Day 10

Know The Signs

The T1D community was rocked this year by a little girl named Kycie. Six-year-old Kycie became ill on a Monday with flu-like symptoms, saw her pediatrician on Wednesday and was sent home with antibiotics with a strep throat diagnosis. Having not gotten any better by Friday she returned to her doctor's office and was sent to the ER where she was eventually life flighted to her local Children's Hospital with a blood sugar of 1,148. En route to the hospital Kycie experienced seizures which led to permanent brain damage.

She wasn't expected to survive but she did.  Kycie spent the next 4 months in the hospital and was finally able to go home in May.  At 4:30am on July 12, 2015 Kycie lost her battle. Just one drop of blood could have saved her life.  Had her pediatrician done a simple blood test or checked her urine things could have turned out very differently for this family.

Know the signs and symptoms. Type 1 Diabetes strikes both children and adults  at any age.  It comes on suddenly and causes dependence on injected or pumped insulin for life.  Advocate for yourself and loved ones.  If you suspect diabetes and your physician isn't listening to you insist on a urine or blood test. If that doesn't work go to Walmart and buy urine ketone strips or the cheapest blood sugar meter and test strips they have.  Their store brand meter and strips will cost you less than $25. Don't ignore the symptoms like I did. Had our pediatrician not tested Caitlin's blood and urine we might have had a very different outcome.

Forty Days of Diabetes - Day 9

What's that thing on your arm?

Since switching to the tubeless Omnipod pump system she's asked this question often. Her T-Slim sat hooked at the waist of her pants with just a peek of tubing showing. It was discreet, out of the way.  She started the Omnipod the day before leaving for Clara Barton, her diabetes camp. Everyone knows what "that thing" is there. She was over two weeks into wearing it when she went to a regular day camp. She came home a little upset that several children had asked her what that thing was. I know a day will come when she wears her devices with pride and welcomes questions about her gadgets.  But that day is not now. Not for a twelve-year-old girl on the cusp of puberty wanting nothing more than to fit in.

She picked a pretty pod last night, one I'd painted silver with holographic sparkles. "Where do you want to put it", I asked. "Where nobody can see it", said she.  

This little piece of technological marvel keeps my girl alive. I want her to wear it proudly and show the world that she is living well with Type 1 Diabetes. That she's beautiful and smart and active and healthy.  That diabetes isn't what they see on tv. That it comes in all shapes, sizes, and ages and that people, young and old, are thriving with it.  

Until then, we'll hide her pods wherever she wants.

Forty Days of Diabetes - Day 8

Forty Days of Diabetes - Day 8 - Where it all began...

She looks like any other preteen girl. Straddling that space between daddy’s-little-girl and “can I borrow the car please”? Silly, sweet, and sassy one minute…mooning over boy-bands the next.

Rocking her Omnipod!!

Look a little closer. You’ll see pods adhered to her skin, one infuses insulin and the other reads the sugar in her interstitial fluid every 5 minutes.  Both are essential to keep her healthy and alive. You’ll see marks on her belly, arms, and back from multiple injections and pump site changes. You’ll see spots on her fingertips from the thousands of times she’s checked her blood sugar over the last three years. Watch her as she plans for every piece of food she puts in her mouth. Every meal and snack requires carb counts, google searches, and a kitchen scale. She never goes anywhere without her gear. A blood sugar meter, fast acting sugar to counteract hypoglycemia, extra pump sites, insulin, and the dreaded Glucagon. Glucagon is a life-saving injectable to be used only in extreme emergency when a diabetic is so low they are seizing or unable to take fast acting sugar by mouth to reverse a severe low. Look at her again and all you see is a sweet little girl. She takes it all in stride and doesn’t let it slow her down or stop her for one second.

Days before diagnosis

Caitlin was diagnosed with Type 1 Diabetes on October 5, 2012 at age 9. It’s hard for me to put my finger on when I think it all started. She’d been a little moody, tired, complaining of headaches and stomach pains here and there. By the end of September she didn’t want to go to dance class anymore and spent most of her time laying on the couch. I remember the night before diagnosis vividly. I was following her up the stairs to bed and she looked like she was struggling to take every step. I was getting exasperated with her slowness and asked her what her problem was. She answered in such a pathetic voice that it broke my heart. “I don’t know.”

When her school nurse called me at work the next day I was not surprised. I was ready for the words when the pediatrician said them but it was still so shocking. She said “You don’t need to go by ambulance but you need to go home and pack enough things for a few days and report to the emergency room. We’ll let them know you’re coming.”

We were whisked into the ER where she was poked and prodded for what seemed like forever. It was nothing short of miraculous to watch her come back to life as the insulin infusion took over for her pancreas. We soon learned that she was in full blown DKA (diabetic ketoacidosis) upon admittance, a life threatening condition. Her blood sugar was almost 1,000 and we could have lost her had we waited even one more day.

She was admitted to the pediatric intensive care unit where the next three days were spent learning all about how to care for a child with Type 1 Diabetes. Taking her home was scarier than a trip home with your first newborn baby. I didn't know how we could possibly handle caring for her on our own.  But we did it.  We took her home and applauded every milestone  The first time she checked her own blood sugar, her first injection, first trip to diabetes camp, first pump site change. She's come so far, we've all come so far.  

We had no choice because And Then There Was D......

Forty Days of Diabetes - Day 7

How low can you go?

Some people have rescue inhalers with them at all times, we have rescue Skittles. A person with a functioning pancreas can hover around 70 when fasting without feeling symptomatic. A person with T1D might start feeling symtomatic around 80 and get progressively worse as their blood sugar drops lower. Or they might feel symptomatic if they're dropping fast from a recent dose of insulin. 

We treat these lows with the rule of 15's. Check blood sugar, treat with 15 grams of fast acting sugar, recheck blood sugar in 15 minutes. And check, treat, repeat as necessary. In the meantime Caitlin feels horrible and is ravenously hungry. She's trying to inhale a giant bag of skittles and I'm trying desperately to keep track of how many she's shoveling into her mouth while anticipating a rebound high from over treating.

Forty Days of Diabetes - Day 6

Insulin is not a cure...

If you had 5 minutes to evacuate your home what would you grab? Family heirlooms, jewelry, photo albums, your laptop?  Ask any family with T1D and they would all answer the same. Diabetes supplies. Not a thought would be given to anything else in the house, we would make a beeline for that cabinet full of D supplies and load up.  

Without insulin a person with Type 1 Diabetes would begin showing the first signs of Diabetic Ketoacidosis in about 4 hours.  Without insulin your body begins to break down fat as fuel which leads to high levels of blood acids called ketones. Left untreated DKA will lead to seizures, coma, and eventually death. Some Type 1's can have some residual beta cell capacity even years after diagnosis so it's unknown how fast DKA would advance. Someone with 0% insulin production would fall ill within 12-24 hours after their last insulin dose and mortal outcome would likely occur within a day to a week or two.

Insulin is not a cure.  I'm so thankful for the pharmaceuticals and technology we have but to be so dependent on outside sources to keep our children alive is just plain scary.  We need a cure! Help us turn type one into type none with JDRF.  

Caitlin's Ketone Crushers Team Walk Page