As the parent of a T1 who is winding up her 8th "live-a-betes" year (that's diabetes language for: she's had T1 for almost 9 years and she's only 14), I KNOW all the statistics regarding the cost of living with this disease. People living with the disease have medical expenses at a rate that's two times higher than for those living without it. In 2007, U.S. citizens spent a combined 174 BILLION dollars on medical expenses - directly and indirectly related to diabetes.
This year we have simply been blown out of the water with medical bills -- and we have great insurance! It's one thing to read the stats and shake your head, and another thing COMPLETELY to realize that your family of 4 people has spent a total, out-of-pocket, of $13,000 on medical bills in ONE YEAR. 92%of that cost was due to T1 and our newest addition, Celiac Disease.
As if that's not enough of a financial hit, we had to PAY the federal government $52 in federal taxes because we supposedly just make too much money. Oh really? I suppose I'm driving a 13 year old car because I love it so much I can't part with it. I'm just so dang angry. I believe the majority of my anger comes from the fact that I know one day all these bills will - technically - be Nikki's responsibilty and that just stinks. Of course, we will never not be her partners in this fight -- financially and emotionally; but if I needed another reason to get remotivated on fundraising and education efforts, this was it.
Hoping, praying and demanding a cure!
Sunday, February 26, 2012
These last few weeks have been crazy busy, which is probably my 'normal' and I just don't realize it. However, I must have been way more tired than I realized. I sat down "for a few minutes" last night around 6:30 p.m. and when I woke up it was 10:00 a.m. SATURDAY MORNING. Talk about being discombobulated - hee hee. I suffer from insomnia or rather my brain has no 'off' switch; Because of this, I can honestly say I don't remember ever sleeping that many hours straight in my entire life. I have to add that I can't say I now feel refreshed and ready to go; just completely out of sorts. So maybe insomnia has its perks?
It is now midnight (however it IS the weekend) and I feel WIDE AWAKE....why not blog. Nikki's blood sugars have been fairly great and we've had no celiac issues; both things are reasons to happy dance. I also have a new obsession; Pinterest. It's been an amazing site for T1 support and gluten free food ideas. I'm totally hooked and recommend checking it out. A friend of mine described it as a "mini vacation for your brain" and I totally agree with her.
In fact, I think Pinterest sounds like a good idea; I'll make it my next stop this evening. All for now.
Tuesday, February 21, 2012
Just a quick update because I needed another opportunity to show off my beautiful 'baby' girl. Nikki's 8th grade formal was last Friday and I'm happy to say that she was feeling great and had wonderful blood sugar numbers for the whole weekend!
Nikki loves any and every opportunity to get dressed up, so she more than enjoyed the process of getting ready for the dance. I got a kick out of big sister Amber, because she was full of advice and compliments for her little sister; and I think she was like the rest of us -- a little shocked that Nikki isn't really 'our baby' any more.
I am happy to report that I did not 'cellphone stalk' (that is: repeatedly text Nikki throughout the night to make sure everything was okay).....I did it through Amber (that is: I made Amber text her repeatedly). Of course, they both caught on to this tactic rather early and I was given the -- very firm -- message "tell mom to stop worrying". So I ceased. It's a good thing my girls know I'm crazy and allow me to be me -- to a point, of course.
Thursday, February 16, 2012
14 years ago today I gave birth to one of the most precious, amazing gifts I've ever been given. Nikki Marie Turner arrived on February 16, 1998 at 1:19 p.m. We called her our 'smiley baby' because she was, well, always smiling. That sweet spirit has grown and become stronger & brighter along with her; in spite of T1 and Celiac Disease -- and all the 'stuff' that goes along with both of those.
As I've mentioned before, Nikki is a blooming artist. I decided this was the perfect time to have one of her designs placed permanently on my wrist. It will serve as a constant reminder of all she faces every day; and of her bravery and shining spirit. I also hope it opens doors, allowing many opportunities to educate others about T1 and Celiac.
Happy Birthday Nikki Mouse. You are my baby girl and my hero. I love you.
Tuesday, February 14, 2012
Nikki has been at home sick with a virus for the last 2 days. Its been harder for her to shake because her blood sugars have been crazy high. Nikki has some pretty important events going on this week, so she is understandably frustrated with T1.
I walked into my bedroom tonight and found this sketch -- drawn by Nikki. She doesn't feel sorry for herself because of T1 OR celiac; and she rarely complains. This sketch really made me catch my breath. It describes her feelings of being held captive by these diseases AND describes her hopes for her future (& everyone else on the same journey). It shows a Phoenix rising from the ashes. However, in this case the 'ashes' its rising from is a mixture of needles, blood and tubing.
I looked up "released" and here is how Webster's defines the word:
(1) to set free from restraint, confinement, or servitude
(2) to relieve from something that confines, burdens, or oppresses
I don't think I need to add anything more.
GOD Bless My Mouse.
Monday, February 13, 2012
Nikki's birthday week started out so great but has taken a 'not so great' turn. She started feeling bad during our family celebration on Sunday and by the evening she was down for the count. Congestion, sore throat and --- of course --- HIGH blood sugars. It's about 5:25 a.m., I just rechecked her and she's still hovering around 452 UGGGGHHHHHHH. In Nikki's words, "Mom, I can't be sick, I have too much to do this week".
I'm staying at home with her today and Bryan will be home with her tomorrow. Thank goodness he's not traveling too far away this week and was able to change his plans and return home late tonight. Between today and tomorrow she'll visit the doctor where, I'm more than sure, I'll get a report of "sinus infection" and we'll start another round of antibiotics. But, like every other thing in her life, the virus has thrown her blood sugar levels into a tail spin.
Nikki is very 'bummed' about being sick. This week has many important events scheduled: Valentine's Day, her birthday, freshman orientation at her high school and most importantly 8TH GRADE FORMAL. So here's hoping and praying that the antibiotics will work their magic and we get the virus & her blood sugar back under control before Thursday. I must admit to feeling frustrated myself. Something that is most likely a minor virus shouldn't turn into a big deal for her (high blood sugars, ketones) and yet it does and in most cases always will -- it's part of living with T1.
All for now.....
Saturday, February 11, 2012
Nikki, like thousands of other teenage girls, loves Hello Kitty. It's so hard to find a bakery that makes tasty, cute, GLUTEN FREE birthday cakes. Years ago, one of my hobbies was character cakes; so we decided this year was the perfect year for me to start baking again. I made Nikki a Hello Kitty GLUTEN FREE birthday cake. It was delicious and, most importantly, Nikki loved it.
She is celebrating her birthday today with her 2 life-long best friends, Samantha & Brooke; along with her big sister Amber, bro Cody and her cousin Shyan. They are off to the movies (in her brand new Hunger Games t-shirt, with a blood sugar of 133) giggling and enjoying being young. Once again T1 and celiac were not able to dampen the day.
GOD is good
Wednesday, February 8, 2012
I was listening to the song "This Ain't Nothin'" by Craig Morgan today and I realized how enormously -- and simply -- true the song's message is. The monotony of life tends to overcome us as we go about the business of day to day living. Often, that monotony tricks us into focusing on petty, unimportant moments which can consume us, if we aren't paying attention.
One of the many lessons I've learned in the years since Nikki's T1 diagnosis, and the recent months with her additional diagnosis of Celiac, is that life is too short to let insignificant 'things' become a significant part of your life. I was joking with my mother yesterday that I just wanted everyone to learn to get along (to which she responded "you sound like a flower child"...okay, so my mom gets me). I realize wanting everyone to 'just get along' may be naive; but seriously, wouldn't it be wonderful?
As I watch my daughter face and battle diabetes and celiac disease every hour of every day (something she will do for the rest of her life), I am constantly reminded of what is really important and what is not. Nikki (and all others in her boat) not only have to face life & death every day, but since they don't "look sick" they also face the reality that the majority of the world just simply does not understand diabetes or celiac; and they do not understand the seriousness and life changing consequences of those illnesses. There are many times I feel like saying to other people "give me a break, trying dealing with what my 13 year old deals with and then come to me and complain about your life" -- of course, I don't actually come out and say it. I do try to remember that everyone has to deal with what life throws at them -- real or imagined, big or small -- in their own way.
So anyway.......this rather 'ranty' blog was totally inspired by Craig Morgan's song. It is not meant to sound like a pity party or anything remotely close to that. After listening to and thinking about the words to that song, I truly found myself wishing that someday every person, everywhere, will have that one moment of pure and absolute clarity in their life, when they realize "this ain't nothing".