Tuesday, September 15, 2009

Invisible and NOT-SO Invisible Illness

Have you ever seen someone who has a really bad headache? I mean, the kind you can just look at and tell they are in pain. They may try to hide it, but it dulls their eyes. It wrinkles the forehead a bit. It makes sounds louder and lights brighter. It can be consuming.

Well, I don't have a headache, but my hips are driving me crazy. Going to the fair and walking that much was probably one of the dumbest things I've done in life...But I so didn't want to miss out on watching my little one having so much fun!

I have myasthenia gravis, but I'm not always in severe pain. With the fibromyalgia, that actually causes more pain, but it's usually when Jacob climbs on me or I bump into things. You should see my legs from the knees down....They are worse than Jacob's! So many bruises! There is some pain associated with the trach, but not chronic. This hip pain is chronic. People who live with pain like this all the time...I just can't imagine. Chronic pain is a jealous thing. It vies for attention from anyone or anything else in your life. I'm so crabby. I snap at Jacob, which I NEVER do. The voice coming out of my mouth just doesn't sound like me...it sounds like a grumpy, tired, mean old lady. It makes me want to weep for my son. He doesn't deserve this.

Then there's the stress of the upcoming MRI which hasn't been scheduled yet. Waiting to hear back from my neurologist...he is a terrific doctor that I would recommend to anyone, but his "getting back to you" skills are well, less than desirable. Especially for someone as patient as I am... (yah, I hear ya laughing....)

I KNOW the Lord has big plans for me, for my family, for my son...I just sometimes wish it didn't include so much pain. I could handle it if it didn't effect my husband and son...if it was just me. But unfortunately, we don't live in bubbles (although a nice germ-free plastic bubble would suit me just fine!). Our actions always effect someone else.

However, when all is said and done, I say with Job: "I KNOW that my Redeemer lives!"


Beverly said...

God bless you girl! What a terrible thing to have so much pain. Yesterday I was the girl with the headache...I feel for you.

Stephanie Faris said...

So tough. I'm so sorry! I have heard of myesthenia gravis (sp?). I remember when I was a teen, a character on Days of Our Lives (Maggie) had it...and then I actually worked with a young girl who had it. One side of her face would sometimes go completely numb.

Lacie E. said...

I wish for more healthy days in yoyr future

Pam said...

Thank you for sharing from your heart...It is so comforting to know that I am not alone as I deal with my (hidden illness & so much pain in lower back/hip) I want to walk I want to clean my own house, I want to drive, today I called my cousin who was willing to take me to the doctor, one of these days...( I hope it is next week Tuesday & Wednesday ~ I am going with my mom, cousin and her mom for a whole two days...with NO doctors or hospital...Lord willing...I need a girls day!!! with no hubbys, I love him dearly however no kids allowed and no rules! :) but in the waiting I too am Praise the Lord for the fact the He is in control, and He makes all things beautiful in His Time!

In His time, in His time,
He makes all thing beautiful in His time.
Lord, my life to You I bring,
May each song I have to sing,
Be to You a lovely thing, in Your time.

In Your time, in Your time,
You make all thing beautiful in Your time.
Lord, my life to You I bring,
May each song I have to sing,
Be to You a lovely thing, in Your time.

Lots of love & Prayers, Pam

Pam said...


I just came across this blog have you heard of it?


Kerri said...

Pam, YES!!! I have written blog posts for them! Lisa Copen is the director of Rest Ministries, part of HopeKeepers, in association with Joni and Friends! That's who started National Invisible Illness Awareness Week! Cool!