Diabetes Awareness: But she's too skinny to have diabetes......

We have been extremely busy the last few months and I have gotten behind on my bloggin'.....A lot has happened in the Dean house since my last post so I have plans for several posts over the next few weeks!

However, with this post I want to discuss type 1 diabetes misconceptions.  I've touched on this topic in the past, but this issue has been coming up a lot more lately.  I used to get defensive when people would make these types of comments, but then I realized its because they don't know any better.

There are many misconceptions about this disease, but I've put together the ones I feel strongly about.  Here is my top 5 list of type 1 diabetes misconceptions:

1. "But she's too skinny to have diabetes." Although diet and weight are factors for type 2 diabetes, it is not the cause of type 1 diabetes.
2. "She can't eat that cupcake." As is should be for us all, moderation is key.  Also, there are times when sugar levels can drop too low and sugar is needed to raise it.
3. "She can't play sports because her sugar will drop." Exercise is important for everyone including those with diabetes.  Precautionary measures like eating snacks and frequent bg checks can help avoid hypoglycemia.
4. "She'll never be able to have children."  Diabetic pregnancy require closer monitoring, but there is no reason,  with excellent blood sugar control and diabetes management, that mother and baby will remain healthy throughout the pregnancy and birth.
5. "Taking insulin will cure diabetes." Insulin is not a cure, it is their life support.  Unfortunately there currently is no cure for diabetes.

Diabetes stinks....

This morning while I was straightening Alyssa’s hair (today is picture day at school), I asked her, “If someone asked you what it was like to have diabetes, what would you say?” She replied simply with, “Diabetes stinks.” Now, for those of you who know Alyssa, you know that she can be quite dramatic. For instance, if she’s has a headache, her head is “killing her to deathhhh” or when she’s told to clean her room, she‘s been known to lay out in the floor explaining she‘s way too exhausted to take on such a task. So, as you can imagine, I was expecting a much more elaborate answer….like “diabetes is horrible!”, or “diabetes is the worst thing ever invented!”

Now most would think that this reply was a good thing. That Alyssa has adjusted to having diabetes, and that although it’s not great, it really isn’t that bad. Instead, her answer saddened me at first. What child should have to endure this? What child should not be able to eat a piece of candy without thinking about it or be able to eat a piece of their friends birthday cake without looking to their mother to be sure it’s ok. (Side note: at a recent birthday party she told me that she wanted to give up eating pizza so that she could have a slice of cake.) What child should have to prick her finger so that it bleeds before each meal, before physical activity, after physical activity, before she goes to bed, in the middle of the night, and every time she doesn’t feel just right. That’s any where from at minimum 4 and up to 8 times a day. What child should have to have 2 SHOTS in her bottom after breakfast, a SHOT in one of her arms after lunch and a SHOT in her other arm after dinner and sometimes a SHOT before bed if her glucose levels are too high.  What child should have to face the risks of heart and kidney disease, blindness, amputations, and early death?  More simply, what child should not be able to go to a sleep over or anywhere without their mom?

I know there are many diseases out there, and each one of them sadden me….especially any disease that robs a kid of the childhood they are entitled to. Diabetes is a disease that can do just that….if its allowed to….. My husband and I refuse to let this happen. The day Alyssa was diagnosed, I prayed that God would let me take this from her. I think in a small way He has because she has no fear or anxiety about the future of her disease.  I think she sees how diligent we are in advocating for her and researching for new treatments as well as preparing her to be able to manage this on her own one day.  She notices all the people who love, support, and push for finding ways to improve her life.  She knows that without research insulin would never have been discovered and meters wouldn’t be improving each time a new one comes out. Without research insulin pumps would not have been invented (We are so excited that Alyssa’s first pump is on the way and how its going to make life a little bit easier. And instead of 4 SHOTS a day, it will be a new infusion site every 3 days!!) Through all of this she believes living with diabetes will get a little bit easier over time. Most importantly, she trusts my words when I say there will be a cure one day.

I’ve said this many times….Diabetes is the first thing I think about in the morning and the last thing I think about before I go to sleep, and I will gladly take that on for her.  In Alyssa’s eyes diabetes is just a small part of her life and I‘m happy in that.


*This year our team, Alyssa's Army, will be walking in JDRF's event, Walk to a Cure at Elon University in Burlington, NC.  If you would like to make a donation to our team, you can do so through the link below.

Alyssa's Army Walk Page 

 

 

Treating Lows

When I ask Alyssa what it feels like when her blood sugar is low, she says that she feels like she's shaking and her heart feels like its going to beat out of it's chest.  What I notice when she's low is that her face pales and although she's cool to the touch, she breaks into a sweat.  Also, her pupils dilate and her speech is affected.....it appears as though she's drunk.  Last night, just before bed she came to me and said she was low.  She was already treating herself with a juice box, as she had checked her sugar and it was 34!!  I sat her down and retrieved the Smarties from our supply cabinet and gave her a few of those after she finished the juice box.  This is always a touchy time because there is always the chance she'll lose consciousness.  The 15 minutes before re-check seems to last forever.  Then just as quick as the low came on, the color starts to return to her cheeks, her words become clearer and she says she feels better.  Re-check 92.  I gave her 4 peanut butter crackers.  At about 2:30 a.m., I checked again.....bg of 187. 

She had an 1 1/2 hour cheer practice earlier that evening, but her bg's were good before and after.  And what was crazy, was that at this time she was just playing on the laptop, nothing physical. She had a normal bg before dinner and ate really well.  Ughh....unpredictable!!

Changes

The endocrinologist made a few changes to Lu's regimen because her hemoglobin A1C had gone up .2 since our last quarter visit.  Yesterday was the first day of the dose change and also her 3 hour cheer practice.  I was a little nervous to give her the higher doses with breakfast, but didn't want her to spike before the 10:30 practice time.  Her Lantus was increased from 9 units, to 10 units and her Novolog rate was increased from 1 unit for every 20 grams of carbohydrates, to 1 unit for every 15 grams of carbohydrates.  I gave her the updated dose with breakfast at 7:30 and on the way to practice, checked her blood glucose levels.  258 at 10:15.....we are back to those post breakfast spikes where the insulin is taking a little longer to kick in.  Practice immediately started with warm-up and practicing jumps.  After about 20 minutes of that, they started tumbling and that lasted about 30 minutes.  At 11:30, we did a recheck of her bg's and she was at 115.  She had a snack, apple slices, peanut butter crackers and low-calorie Gatorade.  They practiced their competition routine and around 1:00, she gave me 'the look', which I knew meant that she didn't feel good.  Re-check, bg's 62.  Quick juice and a snack and the timing was good because the team decided to take a break.  10 minutes later,she perked right back up and finished practice with energy left over.

I thought I had it together.....ugh

So, today was our quarterly visit with the pediatric endocrinologist.  Interesting morning, to say the least.  To start things off, I didn't sleep well last night, so when the alarm rang this morning, I didn't want to get up.  Thinking maybe I shouldn't have....  We did Alyssa's normal morning regimen and she asked if she could have a little coffee this morning. So, since she was up earlier than she had been in a few weeks I thought a little 'children's coffee' might help her get going.  I measured the milk, sugar free creamer and mixed them with a little coffee.  I accounted for that with her Novolog dose and we hit the road to drop her brother off at his first day of driver's ed and then on the see the doctor.

When the nurse called us back, she wanted to check Alyssa's blood glucose levels and I thought for sure it was going to be within range.  At this time it had been 2 hours since she had eaten....but a reading of 405.  I was floored!  She hasn't had a reading like that is such a long time.  Re-check...305...better, but what the heck??  I felt terrible.... I mean, I carefully measured her food, counted the carbohydrates, and calculated the insulin dose.... all of a sudden I felt like the worst mom in the world.  I mean, I know realistically that things like this happen and diabetes is a very tricky disease.  Sometimes bg's fluctuate for reasons out of our control like stress or excitement.  I know Alyssa and I both were excited to discuss the insulin pump with the endo.  Another blow, her A1C was 8.2, up from the last visit.  Ideally, they would like to see it 8 or less.  Ugh!

Well, on a happier note we did discuss the pump.  We are scheduled for an insulin pump class on Tuesday evening.  After we pick out the pump we want, the next step will be to contact the insulin pump company to start the purchasing process and see what pump and how much our insurance company will pay for.  I'll go into more detail in another post about the process of getting Alyssa started on the pump and the steps we'll take in the near future.

More than diabetes....

Alyssa is a beautiful, active, silly, sassy 9 year old girl who just so happens to have type 1 diabetes. She is so much more than a diabetic....Alyssa loves to cheer, tumble, dance, swim, sing, read, give make-overs to her girlfriends, paint nails, and play with her cat, Cookie, and Chihuahua, Poppy. She would rather be outside than in... loves riding her bike and her brother's four-wheeler. If she must stay in, she loves watching music videos on YouTube and playing on Stardoll.com. Her favorite color is green and she loves all things that glitter.....

"Hey I'm a wildflower, growin' in the sunshine
Soakin' up the way of life I was raised in
Runnin' barefoot bloomin' in a summer shower
Ponytail dancin' I can't help it, I'm a wildflower"
(Jane Dear Girls)

 

Diabetes doesn't define who you are....

Today was our church's Memorial Day Service.  This is a service where family and friends honor those who have passed on during the last year and a special guest speaker talks to the congregation about life and death and how we, as Christians, should not take for granted the time we have before we go on to glory.  This year's  guest speaker's subject was "Who are you?"  He believes when most people are asked this question, their first response is their name and then their profession when describing who they are.  His hope was that the congregation would see they should define themselves as how they live their life through acts and service for others.....as a child of God.  A person is more than their name; more than what they do for a living; more than some one's spouse or some one's parent or child. 

This question got me to thinking about my daughter and how many may think her disease defines who she is.  My daughter has type 1 diabetes, but that is not who she is.  Diabetes is just one part of her life.  Although, the disease can be overwhelming and attribute to how she feels, it is important to remember that this does not decide who Alyssa is or who she is going to be..... if anything, diabetes will make her stronger.

It's time to gear up for walking season!!

Yesterday I re-upped for JDRF's walk to a cure on Oct. 6th in Elon, NC.  This year our team name will be Alyssa's Army!  I'm so excited about all the response we have already gotten!!  Research is so important, not only for a cure, but to also make the lives of people living with diabetes a little bit easier.  Remember, without research there would not be life saving insulin or meters or pumps...the list goes on and on!  It's very likely that each of us has been touched in some way by this disease; so, each one of us has a reason to support the Juvenile Diabetes Research Foundation.....my #1 reason is Alyssa!

I just wanted to add that Advanced Auto, Ford Motor Co., Marshall's and Walgreen's are all huge supporters of JDRF.  (I am not recieving any compensation ;)  So the next time you have a choice of where to shop, support companies that support JDRF!! 

Below: Some pictures from last year's walk!!

Alyssa's Birthday!!

Alyssa celebrated her 9th birthday this past Friday on June 15th.  The first thing she said that morning was that she wished she didn't have to have diabetes on her birthday.  So, it became my goal to keep diabetes from the forefront.  We had a fun day hanging at the pool with friends.  I knew she would be swimming and running, so I let her eat anything she wanted.  (Of course I kept the meter close by :)).  But she had mini cupcakes, Doritos, chocolate pudding; and, crackers, ham, and cheese.  When we left the pool, bg was 112!  So we stopped at McDonalds for a happy meal where she had a burger and fries and an injection.  That evening she had a few friends sleep over so, we went out for pizza.  Bedtime bg was 200 even!  What a great day!

Now, her party was the following day and her bg's were a different story.  They started off well in the morning, but by the time of her party at 3 pm, she was around 80 ( a little low for her in the afternoon).  She had several friends over and I'm sure her low was because she was so active.  They played on the slip 'n slide and in the jacuzzi.  When it was time for cake, Alyssa went in to change out of her swim suite and it seemed to be taking her a long time.  I went in to check on her, and she was incoherent.  She was trying to put her dry clothes on top of her bathing suite and when I asked her if she was ok, she said she was very tired.  She was very pale and her eyes seemed to be in a daze.  After she answered me,  she immediately started crying.  I knew she was low.  I grabbed a juice box, a container of frosting, and her meter.  Luckily when I stuck the straw in her mouth she began to drink the juice and I checked her bg..... 30!!  That's the lowest I've seen it.  She quickly finished the juice and I started taking finger fulls of icing and putting in her mouth.  In just a few minutes I could see the color coming back into her face.  I helped her get dressed and held her....she continued to cry...she was scared and so was I.  Ten minutes later, bg's back up to 90!!  Relief!!


(We had 2 cakes, this one Alyssa and her friend decorated)

We went back out on the porch where our family and friends were waiting for us and I said, "take 2!"

Packing for Grandma's

Since Alyssa's diagnosis, the only people she has been left with are her two older brothers and her grandmothers.  On Thursday, my hubby and I will be leaving for the Florida Keys to celebrate our 18th wedding anniversary.  Ahhhh.....4 sun-filled days in paradise!!

Before Lu's DX, all I had to pack were her clothes when she'd spend the night away from home.  Now, packing takes much more preparation.

Alyssa's Packing List

*Diabetes supplies (meter, strips, lancets, alcohol swabs, syringes, & insulin)
*Emergency Kit for lows (Glucagon, smartie candies, and juice boxes)
*4 Breakfasts, 4 lunches, 4 dinners, and 24 snacks
 (I pack snacks and meals that I prepare ahead of time that have the exact amount of carbs that she needs for each meal)
*sugar free drinks & water bottles to mix sugar free Kool Aid in
*Schedule
(I type up her schedule and instructions for what to do in the event of highs or lows and add the emergency endocrinologist's number)
*clothes
*favorite pillow & stuffed animal
*games
*movies
*toiletries

Our car will be loaded down on the way to the airport until we drop her off.  What's funny is that everything that I am taking can fit into 1 rolling carry on bag!

Math skills needed....

After dinner last night, Alyssa went in her room to work on a puzzle.  About an hour later, I went into check on her because she was too quiet and she was fast asleep in her bed....7:30p and way early for her?  I pricked her finger (she doesn't wake anymore) and the meter read 434...wth!!  recheck....413!  I calculated the carbs, she had eaten something she had eaten many times before and had gotten her insulin.  I woke her up and had her get in the shower while I made another injection.  Here is where math skills come in handy....

Oddly, Alyssa usually drops about 100 pts during the night...I'm not sure what crazy girl does in her sleep....but normally I try to make sure her levels are between 180-200 when she goes to bed.  Alyssa's correction rate is .5 units for every 50 over 150, but since her bedtime goal is around 200 and I wanted her to drop about 200 pts., I gave her 2.0 units.  Another problem, sometimes the insulin brings her down too quickly and she feels the affects of a low even if she is not (and if she doesn't eat as well).  So, I also gave her a 15 g carb snack.  I estimated with the insulin and the snack that she would wake up with a bg of about 150.  This morning....the meter read 136... pretty darn close!!

I'm not sure where this spike came from (I searched for evidence of a secret snack, but didn't find any??) I think its instinct to want to find the culprit, although there may not be a tangible one.  I mean really, there is no known cause for this disease so it's understandable that there is no known cause for occasional spikes or lows.   I try not to stress too much when situations like this happen, but its hard not to when your a control freak like me :-/

Packing for the Pool

Packing for the Pool

Today we are celebrating my son’s 17^th birthday with a family pool party at my sister-in-law’s home and as I prepare for the afternoon, I realize how much goes into preparing for Alyssa. This has become second nature and has become part of our ’check off list’ before we leave the house. This prep is not only today, this is anytime we go anywhere. Another reminder that diabetes doesn’t take a break.

In addition to packing sunscreen and beach towels, we have to pack a bag full of diabetes supplies. In her backpack: bg meter, strips, lancets, alcohol swabs, insulin, syringes, juice boxes, glucagon emergency kit, snacks, water bottles, and candy.

Alyssa is a very active little girl and rarely takes a break; and because we are going to a party where there will be swimming and lots of play with cousins, the chances of low blood sugar are very likely. On the upside, she’ll probably be able to enjoy a piece of birthday cake without an extra injection!