Arthritis

Soooo...I need to get this off my chest :(

I have spent way too much time lately 
scouring the internet for any and all information I can find 

about the chronic illness that Lily has recently been diagnosed with.

(Lily has the official diagnoses of 

Oligoarticular Juvenile Idiopathic Arthritis - ANA Negative)

[To see posts on the medical journey leading up to now, click here]

Gotta say... I'm freaking out a little!

It started with Facebook.

I thought, hey, 

I'll find a supportive Canadian JIA group 

who can be informative and comforting, 

and it'll be all good.

No such group exists.

If it does, I can't find it.

So I branched out,

and started looking at blogs,

like this one, and this one, whose beginnings are eerily familiar to where we are now.
(Though these mamas are inspiring... crazy-strong, and hold fast to faith)...

Reading those blogs was a 
Baaaad idea!!

I have deducted that:

people who only mildly suffer from this disease must not find it blog worthy,

and/or

we're in for a really scaaaaary journey :(

Also, that other parents are so organized about everything!

They know not only what their kids are on,

but what it all means.

(Did you know that the Methotrexate that they put them on 
is actually a chemotherapy drug?).
They keep binders of symptom journals and test results,
and get copies of Dr's files on their kids.

Some parents even email their physicians back and forth 

about symptom development and results of tests.

Can I be this organized?

I just don't know.

The other part that terrifies me,

is that we have no medical insurance.

As a single mom, I couldn't afford it, 

so I put Lily on the provincial plan,

(since I made under a certain amount, and at least she'd be covered)

but it ended when she turned 6 in April,

and by then, we were in the process of getting a diagnoses.

I've tried several avenues,

but she keeps getting denied.

Silver lining...

Luckily Craig's work will cover us, 

but only when we become common law/married.

We can apply in August to add Lily and I to Craig's plan,

but the down side is that once I'm no longer taxed as a single mom,

I end up with significantly less $ each month.

We can't really win here, 

but the silver lining is at least she'll have coverage.

So, essentially I've worked myself into a quiet storm of emotional frenzy :(
On the outside, I'm fine.
Inside though...

What I'm afraid of:

My daughter loosing her sight

My daughter needing risky surgeries

My daughter needing treatment I can't afford

My daughter being in pain, and not only can I not fix it, nobody can.

The chances of these things happening,

at times seem impossible,

and at other times seem certain.

Her health can change on a dime.

Each morning when she wakes up,

I feel her forehead, and ask her how she feels,

and my body clenches while I wait for her answer.

One bug.

That's all it will take to take her down and send her to hospital

for shots in her joints.

One stupid flu bug that other kids will get,

and be sick with and will move on from...

Could spell lasting damage to Lily's joints.

Frickin Scary!!!

I feel like she's a sitting duck,

just waiting for flu season!!

She's "healthy" right now.

By healthy I mean, 

her affected joints are only minimally inflamed,

and this is maintained by her taking 6 Jr. Advil a day.

(Advil, because it's cheaper than the Naproxen the Dr would prefer her on)

And so for the time being,

my fears are just unfounded ramblings,

(Thanks be to God!).

But I worry :(

I'm a mom... that's our job, right?

As much as I want to give it all to God, 

let go of the fear, and just trust Him,

I find it soooo hard.

(Losing my 3 y/o brother to cancer puts me somewhat on edge)

(How do I know His plan isn't pain and hardship??)

I pray that God keeps her healthy,

but at the same time,

I worry that part of His plan includes some reeeaally hard times ahead :(

Sooo, that's where I'm at.

Lily's lunches are still going to be the focus of this blog,

but for my own sanity,

I'll be talking a bit more about her journey with Arthritis.


I may even be experimenting with some things in her lunches
in relation to reducing inflammation.

I'll keep you updated as things progress!

Thanks for reading Lily's Lunch!!!

♥Michelle

Happy Halloween!!

In This Lunch:

Cucumber slices with pumpkin cutouts

Apple ghosties

Green grapes

Celery bats

Marble cheddar pumpkin

Soy nut butter sandwich on whole wheat

Chocolate chip granola bar

Miss Lily was Rapunzel from the movie "Tangled"

Her costume was the first dress I had ever sewn,

and it was entirely sewn by hand with no pattern...

Not a terrible job if I do say so myself :)

Happy Halloween!

And then one day... she stopped :/

Lily does not like bentos, creative lunches, cookie cutter designs,

or anything fun in her lunches.

It happened somewhere near the end of last school year.

She wanted "normal" lunches!

Assuming perhaps that someone had said something at school,

I persisted in making them,

just to show Lily that 

no one should make you stop doing things you like.

September came, and I was psyched for another year of lunches!

I had some new bento supplies, 

and was going to go to town on those lunches, 

and was taking Craig's lunches with me!

Well, one can only stay excited for so long,

when each morning their efforts are met with 

disgust, whining, and discouragement :(

Lily: "Maaawm!  Why can't I just have a nooormal lunch??"

"It's easy, you just put things in the bag, and I eat them!"

Me: "I love to make you smile with fun lunches!"

"It's another way to show you I love you!"

"and they are just as easy!"

"I put things in the bento, and you eat them!"

But it persisted,

and lunches I'd spent time lovingly making for both Craig and Lily

would end up largely untouched.

and after weeks of this each day,

one day...

I just stopped being creative.

I had lost the desire.

Gone.

Some mornings, I'd try to sneak in a little something,

like the pumpkins in this lunch,

But they came home untouched.

A silent protest of creativity :(

I just don't know what to do :(

Part of me says it's the arthritis; it's known to decrease appetites.

Even with the lunches shown in this post,

she only eats about half the sandwich

1 snack, and drinks her juice.

Some days she's hungry, and eats it all,

but it's rare.

On the off chance she's having a hungry day though,

I always put in a little extra.

Lunch for school covers recess, lunch and after school snack.

Considering it's supposed to feed her for 6-7 hrs,

she really hardly eats :(

So, as per Lily's lunch... well...

I might just have to find other creative outlets!

I'll blog as we go...

Mmm, Gluten-Free Apple Crisp, om nom nom...

In This Lunch:

GF Apple crisp (Made with apples Lily picked herself)

Green grapes

Whipped cream

Soy nut butter sandwich on whole wheat

Recipe for Crisp to follow...

Mishmash Lunches

In Lily's Lunch:

Soy nut butter sandwich on whole wheat

Fruit-to-go "L-O-V-E"

Green grapes

Carrot sticks

Apple slices

Marble cheddar pumpkins

In Craig's Lunch:

Chicken Stew

Ingredients:

Chicken

2 cans of Cream of Mushroom soup

Water

Fresh crushed garlic

Onions

Potatoes

Carrots

Snow peas

Green pepper

Broccoli

Celery

Spices

Rice

Happy Thanksgiving!!

In Craig's Lunch:

Roasted turkey breast sandwich with lettuce and tomato on w/w bread

Mozzarella heart

Marble cheddar turkey

Green grapes

In Lily's Lunch:

Marble cheddar turkeys

Green grapes

Chocolate chip granola bar

Strawberry jam sandwich on whole wheat

Fruit-to-go pumpkins

Leaks and Fires... Oh My!

In Craig's Lunch:

Gluten-Free Chicken noodle soup from scratch!

Ingredients:

Egg noodles

Chicken

Potatoes

Carrots

Snow peas

Onion

Summer savory

Fresh basil

Spices

Tbsp MSG-Free GF Chicken soup powder

In Lily's Lunch:

Green grapes

Carrot sticks

Marble cheddar umbrellas

Soy nut butter sandwich on whole wheat

Fruit to go Lily and flames

Chocolate chip granola bar

So the day before this lunch was a crazy day!!

We had started the morning off with our first leak,

(See previous post),

and then had some house guests for the morning 

who had come from Pictou, and I was so glad to see them :)

They left, and it all went downhill after that :(

I apparently left my brain somewhere,

and went to pick Lily and my 3pm Wed voice student

up from school while leaving the dryer on downstairs.

I was gone about 20 minutes, and when we got home,

we immediately smelled smoke!

We went around to the back door, and saw smoke billowing 

out of the dryer vent!!

I ran inside, 

(Which I'm positive is the exact opposite thing I should have done),

telling the kids to stay out,

and turned off the dryer.

There was no smoke in the house,

but the inside of the dryer was smokey,

leaving the clothes with the smell.

Long story short,

We had a clog! 

Our vent is easily about 20 ft long,

and goes up inside the walls of the house to reach the outside.

I don't know what the culprit was, but it's in my vaccume bag now!

Yeesh, it was a close call!

What if I'd gone out for the day?

Would I still have had a home to come home to??

I knew better than to leave with it on, 

but as I said, 

I left my brain somewhere :/

Never again, (hopefully!)!!