So Damn Lucky…

I had to take a step back this week after getting extremely frustrated people were not understanding what I was going through as the weather changed, I flared, I was swollen in weird places, I was tired, I was grumpy and I just wanted someone to know exactly what I was going through.  I’m beyond frustrated to start over with a new diagnosis.  I don’t want to learn how to manage all over again.  I don’t want to re-learn how to explain it to people all over again. I just don’t want to start from the beginning…all over again.

But I have to…

Sometimes I think the pain and exhaustion of my chronic illness is so strong it should read across my forehead.  I had to come to the realization, once again, that beyond some visible swelling or skin issues, my conditions are invisible.

If I tell someone I’m hurting, they don’t know what that entails.  I wanted to visually put into perspective what is going on and hope that can help to clarify a little of what I’m learning to go through.

There is a typical body “graph” at doctor or physical therapy offices that want you to “show” them where you’re hurting.  Usually the patient circles an ankle, or maybe a spot on their back, or maybe both knees…

Welcome to the “where does it hurt” body graph for me…

On any one day I could hurt in one of these places, ten of the places or I could start the day hurting in one place and it moves to another.  On my very worse days, I could hurt in all of them all at once.

 

 

Here is where I hurt from Fibro…

Fibro2


Here is where I hurt from psoriatic arthritis….

PSA2

Put them together and I look like this….

Combined2

Add headaches, irritable bowel, methotrexate side effects, extreme fatigue and memory loss and I have quickly realized learning this new diagnosis with my fibromyalgia is going to make this one of the most challenging times in my life.  My pain is different, my energy is different, my body is different…oh yeah…and I also have an 8 month old son,a marriage, a full time job and life to lead.

I grieved for the “old me” when I was diagnosed with fibro.

I am grieving once again with the psoriatic.

Acceptance will come, but as I know from before that its going to take some time.  Now is the time for me to lean on family, friends and my stubbornness to get through.

 

 

  • Dave Matthews said at his Radio City show: “This is a song about where you’re about to trip and fall and smash your face but everything slows down to the point where you comprehend you’re gonna get hurt but it’s not enough time to do anything about it. And this song is about how not to forget about counting your blessings.”

“So Damn Lucky”

Everything’s different

My head in the clouds

I hit this corner
With my foot on the gas
I started sliding, I lose it
Everything’s different just like that

Oh my God, wait and see
What will soon become of me?
Frozen heart
Screaming wheels
Does that screaming come from me?
So damn lucky, when went on ahead
You say, you say
I see you later
I heard what you said a few minutes later
I’m sliding
Everything’s different, again

Oh my God, wait and see
What will soon become of me?
This frozen heart
Screaming wheels
But does that screaming come from me?
I’m dizzy from all this spinning
Now I’m thinking that you did all you could
When you said my love
Take it slowly
Ok, is what I said
Oh my God, wait and see
What will soon become of me?
Frozen heart
Screaming wheels
But does that screaming come from me?
Take me back, just before I was spinning
Take me back, just before I got dizzy
Take me back, amazing what a minute can do
Just like you
So, so, so, so, up, around, around, around
Amazing what a minute can do
Around, Around, Around
Ok….

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Dear Baby A…

Dear Baby A,

Years from now if you ever read this blog there are a few things I want you to know. ..

I may go into detail in my blog that my pregnancy with you may have triggered my psoriatic arthritis.  I may mention that being up all night with you while you cut a tooth sent me into a fibro flare.  I may talk about sadness or frustrations I have with being a chronic pain Mommy (or as you call me-Mum Mum).  You may see me down.  You may see me sleep a lot.  You may see me feel pretty bad after Dad gives me my shot.

NONE of this is your fault.

If being pregnant with you caused pain-it is worth every ache and pain I’ve had-and will ever have.  You were the most amazing surprise to me and Daddy (or as you call him “Boof”), please don’t ever have guilt for my chronic illness!

I remember once when I was little MY mommy (your Mimi) got into a car accident.  She was in so much pain.  I felt so bad, my stomach ached for her. I couldn’t stand to see her hurting! I can’t even imagine what you’re going to feel since my pain is every day.   If your stomach starts to hurt for my pain-I promise you can make it SOO much better with just a hug or snuggle with me.  Play with me, sing to me, distract me from the bad so I can remember all the good there is with you.

I promise to try to never make you feel like any of this is your fault.  I promise to play, snuggle, sing, laugh and cry with you as much as I possibly can and I won’t let my chronic illnesses ever come before that time with you.

I promise to continue to educate myself on treatments and management so that I can have the most quality time with you as possible.

I promise to include you in my fight against chronic pain and I fully expect you to be one of my biggest supporters!  I want to teach you and I want you to pass down what you learn from me to help other chronic pain survivors!

I love you so much, don’t ever forget it.  If I’m having a bad day-please re-read this letter-None of this will ever be your fault.

LOVE YOU TO THE MOON AND BACK!

Mom

Aiden and Me