Sunday 7-12-15
From Rachel Perez.......
When Bull asks if I want him to share anything on the Blog, it's pretty hard for me. Not because I am not grateful for what he is doing, and for what all of our other friends and family have done for us, but because it's difficult to talk about. Still, I feel like I should share. Again, it's hard. My husband is so very private, he does not like the attention, he feels unworthy of donations. He still can't believe his health has deteriorated this much, and the thought of not working anymore terrifies him. He doesn't want you guys to count him out, but he knows that he can't come back to work feeling the way he does right now.
How do I talk about the fact that we are trying to prepare for a life where JP doesn't work on a firetruck, the only thing he's ever wanted to do? And how tough is it to try to prepare for that, yet still hold out hope that he may get strong enough to go back on the job...but we just don't know? How do you tell people you feel guilty for paying to get your hair cut or going out to dinner because you are on the brink of financial disaster so you don't want to spend a dime? But then again, you want to spend a nice evening together when he feels up to it, because you don't know when or if he will feel up to it again for a long while?
When people ask, "how is JP?", it's hard to come up with anything except "the usual, taking it one day at a time." I'm not going to say, "feels like s-h-i-t every day and nothing makes him feel better ever since that F-ing chemo!" Or when they tell him on the phone that he "sounds like he's doing good," they don't realize that it is the first day in a week that he's had the energy to return texts or phone calls. Of course he sounds like himself, because he WON'T call when he's feeling his worst. He just can't. And he will tell jokes and stories and make you laugh, because that's who he is. He just needs a long nap every day and feels like crap all the time. But who wants to hear about that? He'd rather tell jokes and reminisce about working.
We know we are blessed. We know things could be so much worse. We don't want anyone's pity. We are ok, just trying to figure out a "new normal" for us. This means much fewer social engagements and more quiet time at home. JP has to accept the fact that he cannot mow the yard or do outside house maintenance stuff. He can, however, do laundry, so he does! It's still so hard for him to not be working and not be able to do the manly stuff. Just imagine if you had to depend on other people to do things for you that you once were capable of. The puppy was the best decision I ever made. He thanks me for Zip almost every day, and tells me sometimes that he does not have the energy to get out of bed, but he does anyway because Zip needs him to. Yesterday I got a hair cut, my oil changed (2000 miles overdue thanks to JPs trips to the hospial!), and went grocery shopping. He doesn't understand how I have enough energy to do all of that in one day.
We are both nervous about going to Shands tomorrow. Trying to explain the last 3 years of illness isn't easy during an office visit. We have had bad experiences with second opinions in the past and it's hard to have a positive outlook. They might want to do more tests that are painful, JP is trying to prepare himself for that. They might tell us he is screwed. Who knows. At any rate, we are going to see what they have to say.
Thank you for listening. Thank you for caring. Thank you for hoping and praying for our family.
Rachel, JP, Ayana and Reyna
Thank you Rachel for taking the time to put to words what you are going through and how JP is. I will continue to bug you and JP and we will all continue to raise funds, pray, cheer, pray, scream, pray for JP, you and the rest of our brother's and sister's suffering. NO ONE in this department needs to be going through this ALONE-WE ARE A BROTHERHOOD! I sat with Shakey today and listened to the fear as he told me through tears that this might be his last year. I sat there and am helpless in saving him even though I have been on calls where we saved many! But I and the rest of us are not helpless with reaching out to you and JP as well as Shakey and Lisa to help with things at the house as well as financial burdens.....this is what we are suppose to do...this is why I LOVE being a firefighter, being a piece of a family. Rachel and Lisa I beg you both to reach out to us and please let us know what we can do....The Pit is always open for visits and we will come get the boys.---JP you gotta tell us brother...this is how we LOVE and HONOR each brother---this is OUR DUTY and do not take that away from us my friend---YOU would be the first to help another brother!...
I pray for your safe travels tomorrow and you will be in our thought's. Know that we are with you-ALWAYS. Thank you again Rachel for reaching out. Love you both-Bull
This Tuesday, Shakey will be going for chemo to Shands also. Please keep him and Lisa in your prayers.
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