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