I don’t know what I was expecting but this was not it. I realize that I do have a progressive disease-that means that I will die from it or complications from it. I think that I expected to just at some point to get sick and not recover from it-to go quickly. However, this is very different. My lungs are slowly dying. The past two days have been very hard. I have been off of IV’s for almost 3 weeks and I am getting sick. Coughing up crud, tired, really struggling.
This is that progressive part. It is almost as if your body is holding you hostage, laughing at you, because there is not anything you can do about it. It is very wearing physically, mentally and emotionally. There has been times this weekend where I have struggled with just quitting-wanting to stop the fight. Now, don’t freak out on me that is not going to happen but it is something that I have thought.
In the quiet hours, after coughing for 1 1/2 hrs and struggling to go back to sleep, when everything aches, when you just want some moments of relief-these are the times when progressive really hits home. I feel guilty for putting my DH, my family, my friends, my coworkers through this. Although I know that many of them have chosen to walk beside me for this journey it doesn’t make it easier. My brother is getting married next summer and I have told DH several times that I HAVE to be at his wedding (of course, the unspoken fear is that I won’t be). Don’t worry Brother....I plan on being there!
"My flesh and my heart may fail,
but God is the strength [rock] of my heart and my portion forever." Psalm 73:26
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8 Response to Progressive
Praying for you in this difficult time. I know that God doesn't give us more than we can handle. His is there with open arms to give you rest and peace in His will.
Hi friend,
My heart is heavy for you tonight, I hear your struggle. Know that I'm prayin and our Heavenly Father hears your cries!
I love you!!!
Andra
If you think it would help to connect with someone who has walked your walk, check out this blog.
amatteroflifeandbreath.blogspot.com
I started following Piper's blog because my 18 year-old daughter has CF and the thought of her having a lung transplant scares me. I always try to move closer to my fears, befriend them so to speak. And that is what Piper's blog has helped me do.
May you be held in compassion
May your pain and sorrow be eased.
May you be at peace. Noan
Thanks for the website -- Tiffany and I have actually been following Piper's blog for awhile -- don't know if you ordered one of her shirts -- they are pretty cool with lungs on the front of them. It has been exciting to watch her story from a distance and see how her transplant has gone. DH
I figured you had probably already stumbled onto Piper's blog but thought it was worth a mention, just in case. And yes, we did order her shirts - one for every member of the family! Noan
We are praying for you and your family, Tiffany! Hugs!
Love you. Just added your brother's wedding to my list of specifics to pray for!
Both Kyle and I love you very much, you are always in our prayers!! You'll be at our wedding I just know it!! Keep fighting, soon to be Sister-In- Law!;)
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