7/19/15 - JP update

Rachel Perez took the time to send me this update tonight about JP and the trip to Shands last Tues.  Please really take the time to let this (her words) sink in deep!  "This disease is chronic and incurable, it is progressive".  My heart is so broken between what I saw with Shakey last weekend and now this with JP, 2 brother's with NO CURES in sight.  I ask that everyone who reads this to please SHARE THIS BLOG - We need to make as much noise as we can about what is happening here.  We need help and we need it soon.  No more turning our heads and wishing these away anymore.  I need sponsors so I can keep the funds going to these people each month...Tomorrow is day 100 in the journey of Squatting for Shakey and JP....It is just the beginning.  PLEASE REACH OUT TO THESE families PLEASE reach out to me.................Below is JP's newest partner in crime "The ZIPPSTER"..and Rachel's update below that.  More tomorrow my friends....Peace and God's Blessings - Bull

ZIP & JP
Shands was not a very eventful experience. The neurologist of course completed a very thorough exam and asked lots of questions. He still needs to review lots of John's medical records over the past 3 years. And of course he wants to do more tests. JP goes back to see him in October unless an earlier apt for the test he needs opens up sooner. Of course this Dr. has access to the latest evidence and testing available, but it takes time. This disease is chronic and incurable. It is progressive, and it seems like progression has happened fairly quickly these last 3 months, ever since the chemo.

In the meantime, JP is just trying to get through each day. Going to the mailbox equals a workout. Playing with Zip for 10 minutes takes all of his energy. 

Please keep the prayers coming and donate if you can. Time trades are over at the end of July, and then the long, legally complicated road to disability starts. Much love and appreciation to Bull and everyone else who cares for us and is helping us, in whatever capacity you are able. JP gets lonely when I'm working, and texts/phone calls are great (just know that it may take a while for him to answer, especially if he's having a bad day). Please arrange visitation through me or JP, since he is not always up for visitors.

Take care and appreciate life. Be grateful for your health. We are beyond grateful for our friends and family, and the community that is there for us during this time. 

Rachel & JP

Thank you Rachel again for sharing.  We love you both.  Bull

Sometimes we gotta show that we ARE human and that not every attempt we make is successful... Today Tom showed me that no matter what we do - there are gonna be hard times... getting back up and brushing yourself off is the simpliest form of not quitting! He's ok and will just have some banged up shins (and maybe a bruised up pride) ~ Rachel

THANK YOU Lt. Tracy Farmer from Polk County Fire Rescue (pictured on the right) for this great reminder!  We all can tend to get complacent with our nomex hoods!  One small thing like this and being proactive in your health may save your life!!

7/17/15

 For you brother!  Hoping they will allow your plaque in the calendar to help raise awareness....

7/15/2015  DAY 95

Please PRAY for the boys as this week has been tougher than the norm.  I also want to THANK everyone who has trudged this road together with us.  Without YOU, I could not do what I am doing and without YOU, these 2 families would be a bit lost.

The older I get...the more this becomes my truth---Bull
As you read this poster please understand that I posted this  for you who are helping, by sponsoring, by praying, by reaching out in one way or another to help these 2 families.  You are living in a way most do not live - which is a shame, you are giving at a time when just getting by is the norm.   The older I get, the more I believe this is a true statement.  How I choose to serve is something I have to decide for my self, BUT there must be a decision and I believe that it is the key to my freedom, to your freedom...The freedom I mean is - FREEDOM FROM SELF - we are our own worst enemies, and in many ways we can "BS"ourselves better than anyone.  Each day that I squat, each day when I put these boys first, even for just a few minutes-my day becomes BETTER...it is hard to explain how this happens but it does.  I ask each of you to kneel tonight on the floor and think about these 2 men, these 2 heroes and raise them up to the GOD of your understanding.  While you are there please do the same with their loving and faithful wives who have been the strong support by their sides from the beginning and then also please love on the children.  Thank you all for doing this, for doing this with me tonight, because I believe when more than one of us is doing the same thing, that BIG things can happen!...Rest well tonight, be safe and many thanks!....love Bull 

FOR

Shakey & JP

I came home last night from visiting Stephen and Lisa, doing the squats then driving to Melbourne to do the shoot and finally getting to Groveland about 10 pm, and I had to find motivation!  I was mentally beaten and physically done.... so I went to YOU TUBE looking for one of my favorite clips...'POWERFUL BEYOND MEASURE"'...which speaks volumes to me in words and in actions, after that I went on to watch some more and started trying to figure out how this could help my brother's in your long battle NOW and in the DAYS COMING.  I know this is not a game and I am not in your shoes but I do know that when a "Specialist" sat with me and Rach a few years back and told me I should be OR would be in a wheelchair in the next few months to years because of my spine damage,  ya know I wanted to quit living right then and now with the knees so horrible that too makes life a bitch.  I know I am not living with a death sentence but I am living with a sentence that is trying to tell me HOW I should be living with the issues I have, with the pain I have....The difference is I try to tell IT daily WHAT I AM GOING TO DO!!!!  When I made the choice to squat for you to suffer with you, I wasn't sure I would make it this far BUT i had to do something OR life was gonna define me on IT"S weak ass terms.  YOU make me strong!  I watched this video tonight I am gonna share the words with you both- "I AM A CHAMPION- who am I"- is the name and I wish you would watch it.  I know you are fighting BUT we need to be doing more because YOU STILL have a life to live.  As painful and as sick as we are ....life is still in your grasp and you can still make it what you want to make of it.  I love you both and we need to get up and kick the shit out of fear and sadness and anything else that is telling you -your done.  BECAUSE YOU ARE NOT DONE-

I will conquer what has not been conquered
Defeat will not be in my creed
I will believe that other will doubted
I will always endeavor the prestige, honor, and respect of my team
I have trained my mind and my body will follow
…Who am I ???
I AM A CHAMPION

I will acknowledge that a fact that my opponent don’t expect me to win
But I will never surrender
Weakness will not be in my heart
I will look to my comrades,to those who have brought me into this world and those who have trained me
And I will draw strength from them
…Who am I ????
I AM A CHAMPION

I will gladly go out into the field of battle
And I will move, groove, and do everything I can do
And I will reach my field of battle by any means at my disposal
And when I get there I will arrive violently
I will the heart of my enemy and leave it bleeding on the ground, because he can’t stop me
…Who am I ????
I AM A CHAMPION

To my side I have comrades
Comrades that have been with me through stick and thin
Through sacrifice, through blood, through sweat, through tears
Never will I let them fall
Never will I let them down
…And I will ever leave an enemy behind
Because our opponent doesn’t know my heart
Who am I ????
I AM A CHAMPION

No one will deny me
No one will defy me
And no one will tell me who and what I am and can be
Believe will change my world
It has moved continents, and countries, and put man on the moon
…And it will carry me through this battle
Who am I ????
I AM A CHAMPION

Defeat, retreat those are not in my words
I don’t understand those definitions
I don’t understand when things go wrong
I don’t understand mistakes
But I do understand this
…I understand Victory and I understand never surrendering
No matter how bad things go
My heart and my mind will carry my body when my limbs are too weak
WHo am I .???
I AM A CHAMPION

Today will be that day
Not tomorrow, not next week, but right now, right here, in your house and in your home
Who am I ???
I AM A CHAMPION

History will remember me
And I’ll not worry about him being kind
I’ll define myself
I’ll write my own praises
And no one will tell me what I can and cannot be
…I will never go home, not without giving everything I have got
‘Coz Who am I..?
I AM A CHAMPION
Who am I ???
I AM A CHAMPION
WHO AM I ???
I AM A CHAMPION

You are my brother's and we will fight together-Bull

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.

Sunday 7-12-15

Rach and I went to visit Shakey and his family today, just a short visit that has been a long time coming.  I know that their lives have been upside down and inside out since this whole thing started and with the girls athletics going on and camps out of state I hated bugging them about letting me visit...But I am selfish and I NEEDED to see and talk and hug and listen to Shakey in the flesh.  Lisa was gracious enough to allow me the visit.  I will share about that later this week but I will share with ya'll some pictures from the day.  I want everyone to also know that this family is in a BATTLE in many ways and is need of your prayers and continued support and THEY ARE EXTREMELY THANKFUL to everyone for all that has been done so far.  I don't think Stephen's eyes were dry much of the time as he shared so much with us.  More later- here is my buddy and his queen.

Miss Lisa-Shakster-Bull-Rachel

There is so much to share with you all and I will in the next day or so but I got home around 10:30 tonight and received a text from Rachel Perez, she wanted to share with everyone about JP so I need to post that email before it gets too late....Thanks Bull

*** DAY 91 ***

Saturday July 11, 2015-11 pm.  I really wanted to get a post in this week but as you see I did not.  I can blame it on being too busy but I could have made time.  Truth is I could not find the words, or should I say, I did not like the words that came to me.  Since the thoughts and squats of July 1st my thinking has stayed pretty dark.  I keep going to that place of finality "The END" thoughts.  I am trying to be honest here so please understand.  See, before when my brother's were sick I didn't think of them daily like I do now, because I was too busy with "DOING" life as it is expected of me and of how I had come to believe life should be lived.  Now everything I thought I knew has been thrown out the window.  The things that were important, are not as important as before and I am still trying to figure out how to do this living the RIGHT way, if there is such a thing as how to actually live life!...I mean we are taught how we should act and how we should live but as I look at things now I see things I need to change or should have changed a long time ago.  I went to a friends new gym this morning in St Cloud to help coach (and to squat in a different place.)  It was a 1 hour drive from my house to there.  I wanted to sleep in and maybe I should have, but like I said earlier, I need to change things and this was a change for me.  I wanted to put Joel and Genny ( owner's of The Strength Station) first this morning. I got there at 8 and I left about 10:45 so I could go help coach/support Trebor, Doss, Paul and Steve compete at the F3 crossfit competition in Winter Springs.  The place was packed and they were all doing great, then Katie grabs me and says Treb has been injured!...I have been there 20 min and now I am driving Trebor to the ER because it appears he tore his bicep!  A couple hours later we are back at the comp to watch our brothers and Treb is now in a ace bandage wrapped up!  While I was waiting with Treb at the ER I got a text from Doss that read..."Thank you for taking care of Trebor"...I loved that message and it mean't a lot to me. But isn't this what friends do?  I missed a lot of the comp but that's ok... I know now I wasn't there to watch...the "Director" had different plans for me!  Later, Rach texted me to let me know that Shakey had posted on FB....I read what was written and I read it again and I can not imagine how hard it is to fight daily with this illness.... but I know this..that LIFE IS NOT EASY or fair or fun or what ever other cliche there is BUT I know this.... there are a BUNCH OF US who LOVE you Shakey and Lisa and JP and Rachel and both your families and we are gonna do our best to keep fighting and praying and standing next to you all daily.  We will do our damnedest to be at our best at being next to you all every day.  I was not taught how to do this from my parents, or what to do when a friend is dying.  Nobody showed me the way to act or feel or even what words to say.  We have "How To Do's" in everything else...but I will tell you this...we as a group of brother's and sister's will be there for you-day in and day out!...Here's some pic's from the week y brother's!

Me and my Shakey shirt with 320# x 2 reps 1 for Shakey and 1 for JP

Dave Coughlin in his Shakey shirt on a mountain in Ga

at The Strength Sta with Rach, Joel, Genny, Me

Brother and new LT Treb Jones in Oviedo ER with bicep tear

Rest well tonight my brothers and know you were in our thought's and prayers today and you all will be tomorrow also.  Stay Strong, love Bull

Squatting for Shakey and JP

400#

400# Safety Bar Box Squat

I gotta tell ya, squatting on the night of the 4th of July took me to some dark crevasses in my mind.  I started wondering if this was the last 4th for my buddies and what was going on at their homes.  I started questioning my sanity and if this was doing any good at all.  I was getting angry that I hadn't been able to gain any more sponsors and wondered what I was going to do if I could not raise any more money.  I have been saying that the website is coming but it is not here yet.  I tried to figure out how I was gonna keep this up after my double knee replacement this Oct. or Nov....I have a lot of people tell me lately that this probably is not the best thing for me and that I need to take a day or 2 of rest.  It is amazing how much I can think of or how much bullshit runs rampant through my head when I allow it....luckily it was only about 30 minutes of squatting!  I probably would have PUNCHED myself if it would have been another 30 minutes of my head talking to my head!

"We must travel in the direction of our fear".
-John Berryman,
"A Point of Age"

I'll finish tomorrow.