Saturday, September 18, 2010

Invisable Illness Awareness Week: beyond the illness...

It seems as if I raised a little concern with my last post. Sorry about that! No worries friends, I am not about to drive my car off the cliff or anything. Maybe I can clear a few things up throughout this post.


I was going to skip this topic due to being in my "funk" and all, but I decided that I may have something to add to Invisible Illness Awareness Week even if there are already some GREAT posts out there already.
Speaking of... to read a few of the amazing posts already written, you can visit Hallie, Alexis or Heidi.

 So back to the post...


It's hard to believe that with a name as popular as "diabetes", Type 1 would be so unknown. I mean... "diabetes" is all over the place. It stars in commercials, talk shows have entire episodes blocked out for it and it even gets a cameo mention on the Disney channel. Not to mention all the grandmas, aunts, uncles and sisters-boyfriends-cousins-moms who have it... right?


So why so invisible? Maybe it's like growing up in the shadow of your older sister(I don't know how exactly, but work with me here). They both have the same looks, the same last name, but their personalities are different. No one notices the younger "bratier" sister because the older sister is more popular, she knows more people, EVERYONE knows her and they all talk about her... not that she is well liked or anything. The younger sister is quiet, silent even, but make no mistake... she is BRUTAL if ignored. She can throw a tantrum like you've never seen... sneaking up on you and attacking everything you can imagine. But she is slick... she knows when to stomp her foot so no one sees it. She knows how to sucker punch those closest to her without batting an eye. She can keep a smile on her face and turn your whole world upside down. Heck, she does it 40 times a day and still stays "invisible" to many.


But what about beyond the illness? What about the invisible things that go on because of the disease? The things that even those who might see the illness don't know.

The above mentioned posts talked about the dark circles from sleepless nights, battered finger tips and endless carb counts. But what about the financial toll these "illnesses" take. They are ongoing. There is no remission or break from them. Simple grocery shopping and back to school supplies costs more because of them. Hallie talks about Celiac... do you think special gluten free items go on sale?? Sure, some everyday brands are Gluten free, but you don't always have the option of picking up that BOGO sale or the cheaper store brand.


Lower carb counts cost more too. We use to use Publix bread($.99 - $1.49). Publix bakery is not to far from us and their bread ALWAYS stayed fresh the longest. Then, dx day came and we realized that when your only allowed 45 carbs at a meal(on MDI)... 8 carbs makes a HUGE difference. After dx we started using white wheat($2.19 - $2.99) (Justin does not like "brown bread"). * 8 carbs less allowed for a cookie OR that 9 carb bag of Cheetos in his lunch. Sounds silly to the outside world??


It's not JUST bread... sugar free/reduced sugar... that stuff doesn't go on sale. That's the stuff with the little Astrix sayin **does not include. Maybe I'm crazy. Maybe I am on my own in my thoughts here. But, lets face it... THIS.ECONOMY.SUCKS!


People are loosing their jobs everyday. With those jobs goes the health insurance. A lapse in health insurance sometimes means not being able to get coverage because, OF COURSE, to the insurance companies these illnesses are NOT invisible and they don't want any part the them. People are loosing their houses. Their life savings just trying to keep themselves(or their child) alive.

**Disclaimer: BREATH! My hubby is not loosing his job and we are not loosing our health insurance or our house... just so you know!. But this IS HAPPENING everyday. And it's sad, unfortunate and just plain wrong.


So whats my issue you ask? Well the "funds ARE funky" over at our house(thats what we call it). We sat down the other day and added up the medical expenses that we pay and IT.WAS.NOT.PRETTY!! I didn't realize it until it was added up and it was pointing and laughing at me. And we DO have pretty darn good health insurance... It's CRAZINESS!


Would you believe that all that babbling has lead you to my life's intersection?

Thing is... my goal was to get Justin to middle school before I went back to work. These days I am just not sure if that is do-able anymore with the cost of D in the mix. Then again, without D... going back to work wouldn't be AS MUCH of an issue. IT'S ALL ABOUT THE D... ALWAYS!


My intersections look like this... continue on with the straight path while slowly running out if gas.


To the right is a dream job that allows me to be home in the afternoons... waiting is key to turning right. Downfall is that there may never be an opening to that dream job for me to merge into.


And left... always the hardest turn. Is a possible full time job if I choose to accept it. This job may mean the dreaded daycare. My kids have never stepped foot in a daycare. I KNOW, people do it everyday. But D throws a caution sign ahead. I don't even know if I can find an opening or one that will take Justin at this point.
So I ask... how much is it worth? How much money is worth putting my child's medical care in the hands of a stranger?

My heart knows all the money in the world is not enough.

But my reality says I need to settle on a price.


As I told a good friend :)
I feel like D is on both sides of this decision. It's creating the need to go back, yet it also makes it hard to do.

In true Lora fashion... as soon as I have all the details, I will weigh my options. For now, I worry and I pray for the strength and guidance to do what is right. Whatever "right" may be.


Thank you all for your advice... Love you all!

10 comments:

Tracy (The Crazy Pancreas) said...

That is definitely a TOUGH decision. I will pray for you too. Whatever decision you end up with will be the RIGHT one, no matter which one it is. God will steer you down the right path for YOU and for His plan.

I will keep praying for you, my friend.

Love you.

Meri said...

My heart aches for you. I KNOW how hard this decision must be. I will pray for the dream job...because remember? I totally believe in miracles! And you my friend, are due for one.

Love ya!

Wendy said...

OH MAN, I feel this one.

I am praying for your intersection....praying, praying, praying....

Beautiful post.

htimm=) said...

Great post! (thanks for the love) I'm praying you find just the right fit. God is our provider and He cares about the intimate details of our lives. He will bring just the right job at just the right time.

Reyna said...

WOW...this one is HARD Lora. I know, and I was fortunate enough to have the "right" turn. It is not a job I am passionate about, but I am here for the children after school.

I will be thinking of you and hoping some clarity on the situation evolves soon. The situation is a double-edged sword for sure.

Lorraine of "This is Caleb..." said...

I wish it were easier. I'm happy for you that you have several options, but sorry for the heaviness that making such a decision brings.

Good luck to you. I hope your heart or gut or whatever inside you, helps lead the way.

Heidi / D-Tales said...

Oh, Lora, I send you big hugs as you work through this. I can see the need that D has created and I can see the road blocks that D presents. Ugh...life with D is just never easy, is it?!

And the bit about D striking our finances -- that hit close to home! With D in the family and with a self-employed husband, the ONLY health insurance we could get was one with a very high deductible. As a result we not only pay through the roof to have this lousy insurance, but we pay out of pocket for all D supplies, lab tests, doctors' visits, etc. Imagine how much those test strip error messages get to me! And the extra food costs, and the extra school supplies, the time my husband takes off of work because of D, and the list goes on... sigh... you are not alone in your thoughts or your "funky" funds.

I have a lot of empathy for you right now. I get it, and I have my fingers crossed with hope for you!

connie said...

Whatever you decide, which ever path you take...it will be the right one for you!

Good luck and I hope that all works out for the best :)

Hallie said...

I so wish for an easy answer for you. But life with D is never easy. Never. I will pray - pray that the path meant for you and your family is made clear and that you will be filled with peace about the direction you take. I agree with Meri- being on the miracles! ((hugs))

Misty said...

Lora, I'm thinking about you and praying that you will work this out and be comfortable with your decision. Hugs to you!

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