Alyssa's Journey with Type 1 Diabetes





An outlet, a diary of sorts, a place for thoughts, a place to connect,
an expression of feelings about Juvenile Diabetes......



Wednesday, September 26, 2012

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 

 
 

Sunday, September 23, 2012

It's walk season.... Fundraising ideas

We have so many fundraising events that will benefit this year's walk. Of course we have the online donating through JDRF's walk page. We had a fundraising yard sale a couple weeks ago that was successful. Currently, we have 2 catalog/online shows going with Pampered Chef and 31. Next weekend some friends of ours are hosting a pig pick in' fundraiser. We asked one of our company's suppliers and they agreed to sell JDRF sneakers and another hairstylist friend is donating a portion from each client for the month of September. Our church also has been extremely generous with love offerings and donations for our yard sale.

With a little less then two weeks to go, I do not see how we can not reach our team goal of $3500!!

Tuesday, August 28, 2012

First day of school

With the first day of school came a new diabetes schedule. Left behind were the late nights and sleep in mornings. We started the new schedule a few days before school started, but I still knew the lazy days of summer that fit her current diabetes protocol was sure to change with the active life of a new 4th grader. I knew she would be more active so the morning of the first day I reduced her fast acting insulin. Mid morning she had her provided snack, but at lunch time a bg of 70. 2nd day of school, reduced insulin even more, usual snack and a lunch bg of 63. On the plus side, bg's have been normal at dinner which means her dose is good at lunch as well as the carbs in her afternoon snack. Tomorrow I'll make another reduction to see if that helps with the low blood sugar at lunch.

Monday, August 20, 2012

Going back to school

School starts 1 week from today, so I broke out Alyssa's most recent diabetes plan and starting filling out the paperwork for my meeting with the school nurse on Thursday. I will also give a brief training to her teacher on what to look for with Alyssa. The teacher will be attending a diabetes class provided by the school that usually happens sometime during the first week of school as well. So, this little training session is just so she knows what to expect the first few days of school.

I purchased enough snacks to last a month for the teacher to keep in her room as well as several juice box packs to treat lows. I've started getting her diabetes bag ready that stays in the office that will contain her meter, strips, syringes, glucose tablets, alcohol swabs and insulin. Ideally I would have liked for Alyssa to be on the pump before school started, but at least we have the ball rolling.... hopefully final approval in the next couple of weeks!!

Friday, August 17, 2012

Beaching it....

Vacation to Key West was great and the trip through airport security on the way back was much better than on the way there. Blood sugars behaved for the most part. We did have a few lows at the beach, but we were well prepared since we expected it.

Wednesday, August 8, 2012

Airport Security

The start of this trip reminded me of the Griswalds..... We were an airport security train wreck. I was so concerned with letting security know about Alyssa's diabetes supplies that forgot to remind her to remove her laptop from her bag and to toss her bottled water. So that was a little hold up...

I packed all of Alyssa's supplies in a little bag cooler. Inside was also a 4-pack of juice boxes and the security officer told me they needed to be less than 3oz umm no...4oz is 15 grams of carbs. I cleared it all up, she swabbed the juice and after running everything back through the scanner, we were on our way.

Overall, not too bad for Alyssa's first time flying since diagnosis. I'll be better on the return flight!

Monday, August 6, 2012

Getting ready for vacation

We are nearly packed for vacation. This is Alyssa's first time flying since her diagnosis. I got a letter from her endocrinologist and packed double the supplies we will need for the week long trip. I'll let you all know how it goes on Wednesday :) This afternoon, we even had time to hit the nail shop... Key West here we come!