I'm tired, I'm worn...

This song below speaks volumes to me. I really feel like the words were written for me.  I'm having a bit of an upsetting week- I wonder if there will be anything easy in our lives. Physically I'm having a bit of a setback and trying to lay low as I was diagnosed with double pneumonia on Tuesday.  I hadn't been feeling well since Friday.  I've never gotten as sick as I now do since my BO diagnosis.  I've never had pneumonia until this disease invaded my lungs- and I've had it every year since my lung biopsy.

Yes I try and maintain a happy demeanor but some days like today I'm screaming inside: "ENOUGH!"  How much can one person take?!??!? I've had physical issues since I was 2- as far back as I can remember and now the pathway before me is a double lung transplant which is NOT curative?!?!? This is mind blowing, unfathomable, and completely unfair!  LIFE IS UNFAIR!  I know people personally that have skated thru life untouched and it angers me.  Yes I'm aware "you don't know what it's like to be someone until you walk in their shoes", but I've seen many ungrateful and selfish people that abuse their body and take it for granted.
Yes I'm aware God did not promise smooth roads and challenges are a guarantee, but when is enough  enough???????
I'm not even going into the challenges my son faces with his speech apraxia or the fact that a six year old has such severe sleep apnea that removing his tonsils didn't help and he has to wear a c-pap. Really? A six year old? So I did go into some of the other issues are family has to deal with but this blog is mainly about my journey.  That gives you just a taste of the other battles being fought.

I know God is there but right now I have a hard time feeling Him, does he hear my cries, does he feel my anguish?  I need something to go right, go smoothly, go without battle.

So please take time to read the lyrics, listen to the song, and pray for our family.



I’m tired, I’m worn
My heart is heavy
From the work it takes
To keep on breathing
I’ve made mistakes
I’ve let my hope fail
My soul feels crushed
By the weight of this world
And I know that You can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That You can mend a heart that’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
‘Cause I’m worn

I know I need
To lift my eyes up
But I’m too weak
Life just won’t let up
And I know that You can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That You can mend a heart that’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
‘Cause I’m worn

My prayers are wearing thin
I’m worn
Even before the day begins
I’m worn
I’ve lost my will to fight
I’m worn
So Heaven come and flood my eyes

Let me see redemption win
Let me know the struggle ends
That You can mend a heart that’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn

Yes, all that’s dead inside will be reborn
Though, I’m worn
Yeah, I’m worn

By Tenth Avenue North


http://m.youtube.com/watch?v=UUEy8nZvpdM

How to save a life...

It's really simple...sign up to be an organ donor! Www.giftoflifemichigan.org or www.organ donor.gov

I never get tired of seeing programs about organ donation and the process. I just watched NY Med ( thx Kelly) and a young man was waiting for a heart transplant. He got the call and he seemed so calm and him mom was freaking out.  The heart was in ice for 6.5 hrs which is a bit long and his new heart had to be shocked many times but it started!

The mother said the waiting is a very unnatural way to live and she's right.  I just want to be free- free to breathe, free to run, free to travel, free to eat whatever I want , I want to be free.

There have been a few misconceptions about the transplant process, let's clear them up.

1. I do not know when my surgery is, this is something that is NOT scheduled.  I get my surgery when someone dies! There is no other way. That's heavy- I will have someone's lungs inside of me. I hope they like me ( I eat pretty healthy except for chocolate ), I hope my internal body is welcoming as it will be seen as a foreign invader and my body goes on attack mode.  This is why I'm given so many immunosuppressive meds.  Acute rejection is pretty common in first few yrs, it's the long term rejection that is a MAJOR problem - I will then have another type of BO-chronic rejection BO.
2. I do not know when the call will come- wouldn't that be nice tho?  I could make sure I was clean and spiffy before my chest is ripped open.
I have a feeling the call will come in the middle of the night or when I'm seeing patients at work. Chaos will surely ensue.

3. Lungs are hard to come by- most motor vehicle accidents that cause death also cause chest trauma.
4. Transplant is NOT a cure. 

https://m.youtube.com/watch?v=W7xocblW6mI