Driving Game

So yesterday (sunday) my mom and I wanted to get out of the house and go someplace, but neither one had any idea of where to go. That is late in the day after my many naps and battles with seizing stomach cramps and fighting with drains and redressing them. So since we had no set destination on where, I told my mom “Second star on the left and straight on till morning” but she didn’t know how to get there. I also told her I will close my eyes for a while she drives someplace, to try to get us lost and when she is super lost have me see how long it takes to find my way home. My mom has issues with the whole N-W-S-E, she gets mixed up which side of State street she is on. “I want to get to 700 e, I am at 600 w and the numbers are getting smaller, I need to turn or do I turn around? I am lost”

Finally I had the bright idea since I had some loose change in my car we flip a coin to see which direction we should go whenever we hit a red light or the road ends in a T (or dead end). Heads turn right, tails turn left, and if I drop the coin go straight. It would be easy to think that playing a game like this could make us just go around in circles. It almost did we started out heading west then south for a ways and then north, then west(under I-15), then north through Rose Park area. By this point I lost the 4 pennies I had under my seat, and I finally thought of a place we coul go watch the sunset. (Bountiful Blvd). And since we were in the area I showed her a really cool park/Trail (Mueller Park) where before transplant I have enjoyed riding my bike. Hopefully one of those days I will be back on it again with strength to ride all the way up to elephant rock and beyond.

So that is where the following pictures were taken.

A few Picts to enjoy

I like mountian creeks...




Aren't sunsets nice.

I don't know what to say

I have ok days, and I have some really not so good ones. And I can have good hours and I can have some really painful hours. Today I seemed to all parts of the spectrum today. No energy not wanting to do anything, and I have some energy and want to go hang out with friends. Unfortunately there was no church this evening because it was the all church campout. I was really looking forward to going. I like camping, especially for the change of scenery. But my body wasn’t feeling up for being outside my comfort zone right now. By how rough my day today was I am glad wasn’t away from home.

No new news

Nothing new is happening in my life I am just breathing air waiting for time to pass. No new news from the transplant team, I haven’t had to go back in for unexplained pains or infections. The doctors are taking a break from the game of stump the doctor. I have been sleeping a lot and watching TV not wanting to do anything that causes the drains to start complaining.
It has been so hot lately working with my laptop on my lap gets extra hot after 5 minutes, and I haven’t wanted any more heat in my life.

I guess this is the long slow hill that takes you the roller-coaster so it can get even more speed and excitement during the flips and loops. So I am still hanging on and trying to enjoy the ride. God is still on His thrown and in control, and knows what is ahead of me where I can’t see.

FYI- Did you know that Rhinoceroses have very poor eyesight. They cannot see a person standing motionless if they are more than 100 feet away, and they can run at 30 miles an hour. Now that has to be quite a ride for the Rhino, running at top speed not being able to see what is in front of him. But knowing it better move before your horn gets to it because it is bigger.

Sometimes I think that is how running by faith is. Lord you know what is 101 feet in front of me cause I can’t see that far. Lord take control and move me, cause I feel out of control and feel like we are going to crash. But it can be quite an adrenaline rush at the same time the ultimate amusement park thrill ride.

Rip Van Winkle

I have promised a friend that I would write a blog for them since I haven’t updated in while. So now that I am awake for a few minutes I guess it is time for another update. I haven’t done much of anything lately other then sleep. I have been sleeping almost all the time. I wake up in the morning 8:30ish for about an hour then back to sleep then I wake around lunch. Awake for a few hours and then I am back asleep for an hour or two. Then I am up for several hours at night then back asleep around 12:30 or so. So right now I have almost no clue what is going on in the world outside of my apartment. I feel like Rip Van Winkle in sleeping my life away.

I do try to get out to make it to work so far it has only happened once in the last week. And I try to make it to church also I haven’t been the most successful at that either. By the time I am ready to go all of my energy is gone so it is back to sleep again.

Where did all the energy go

There are a lot of things in my life right now that seem to be taking my energy. My mind has several things that I would like to do, but I am finding that none of them are getting done. I want to blame it on my “bad” liver, but my liver levels were a lot higher back in January prior to transplant. I want to blame it on my muscles being week, but that just means I need to get out and move more. I want to say it is because of the pain, which there have been a number of days I have had a lot it, the doctors finally found some pain medicine that really works well. I go from a 6 or 7 on the pain scale to 1 or 2. I wish I could feel this good without any drugs. It would be easy to try to blame it on the heat. My mom is hating this Utah hot weather. I don’t mind it to much. I wish I could be outside doing something in it, like swimming, or hiking in the mountains, or something fun.

So in reality I want to blame it on everything else but the real problem which is me. My own lazyness. Tonight I heard there was going to be some fireworks set off downtown. So After many hours of trying to get me going (unfortunately missed church by taking to long) I got myself moving which right now is one speed slow and stopped. My mom and I walked downtown and saw a small show. It felt good to get out and go for a walk. I was thinking why I don’t do this more often and it hit me I spend to much time right now watching tv and trying to find “comfortable places”. I often try to go back to sleep. One reason I am probably tired all the time is that I haven’t been pushing myself to do more. It is easy to say it but it is a fight against myself to actually do it. You don’t use it you loose it. And I probably haven’t pushed myself hard enough to not loose it. But the one thing this doesn’t answer is the sick nasty feelings I have in my gut. You know the ones that tell you your not back to normal yet. And the 2 plastic tubes coming out of my liver doesn’t help to motivate either.

And I am out again

Once again I have been checked out of the hospital and am now home. They still don’t really know to much more about why I was feeling. Lately all I have been wanting to do is sleep. It is crazy I am not used to sleeping so much. Then after sleeping for about an hour I wake up and still only have about 5 minutes of energy. I am going back to sleep now.

Another scope

Most people only have to have one or two colonoscopys in their life. This is my 3rd one this year. I think all total I am up to 7 or 8. The doctors saw on the cat scan that my colon was enlarged so now they want to go in and figure out why. That might me our problem, This time. So in the mean time we just wait. And sleep...

Another weekend in...

Once again I stat not feeling so good. So once again we make our late night run to the Hospital emergency... This time has been different than anything I have previously felt. It is everything in my gut all at once. And of corse they start off with blood culters and a cat scan and then admitted to the hospital, to play another fun round of stump the doctor. Symptoms: Pain in the belly low back, drains slowing, stomach churning overall blah. I feel like I am going to pass out when I move, throw up and go diarrhea all at the same time. Food Poisoning? To much dairy? Infection? CMV? Heat exhaustion? Sleep depravation? or something else. Hopefully the doctors can figure me out..

Patience

Patience is a hard lesson to learn. I am so sick right now of the way I am feeling. I can go from having a little bit of energy and motivate myself to do “... (something)” then less then 5 min too I no energy and all I want is to sleep. It doesn’t help when belly feels funky. It is hard to describe, you know the feeling when your foot or hand falls asleep and it tingles pins and needles, That is what my skin feels like. Then inside my intestines feel like they are Jello with no muscles holding them in place, so they bounce and wiggle and jiggle. Then add two drains going into the belly and everytime something moves inside the drains are pulled a different way. And just for the fun of it add some diarrhea to the mix and I think we are getting close to what my middle feels like most of the time, It is super frustrating and a real pain. So not moving or doing anything that would cause my belly to move or bounce is where I am most comfortable right now. My mind has all of these ideas of things I want to do, (which usually involves moving) so my body revolts in the process. I want this second transplant to happen soon just so I can get a life back. But there is no garentee that it will work any better the second time. I really want to just rip out my food processor, but that would probably cause other issues.

This whole process has been big test of patience and faith. There is nothing I can do to “speed” things up. It is totally out of my hands and completely in God’s. I am getting to learn more patience one day at a time. If God decides to miraculously heal me and I don’t have to go through a second transplant and we stump all the doctors, I can only say “Praise God”. Or the second liver comes available and I go back in under the knife. As much as I would like to complain and ask why did it take so long? The answer is always the same. It happened at the perfect time, and place, so God can get the most Glory, and I could get the most out of the lesson that God is trying to teach me.

I guess that means I need to change my attitude. I need to learn how to be content in my weakness and sickness. I have been wanting to be someplace else in life for the last several months. Like wanting to be 100% healthy and be able to enjoy summer, hang out with friends, work crazy hours at the TV station. I have been wanting some other life. Even dreaming about what I used to have, wanting to have a girlfriend/marriage partner, instead of enjoying and appreciating were I am at right now in my singleness. It is hard to not get discouraged and loose hope, and remember this too will soon pass.

From my very small view of the world it seems so overwhelming. But that is where more faith comes in and we just hang on and enjoy the ride.

New Prayer request

I have gotten the word today from the Hospital that they have re-evaluated my meld score for another liver transplant. They have granted me a few bonus points so that I can be higher on the transplant list. I don’t know what my new calculated meld score is but now I am 3rd on the A blood-type list. Which basically means I will be considered sooner if a liver comes available. But if it is the wrong size or something else it will go to the “Best” match. It doesn’t mean that I will be the third person to be transplanted. I was fifth on the list in march when I got transplanted and when I was first listed in november I was number 1. So ultimately the number doesn’t matter, it is in God’s hands when I go under the knife.

Prayer request 1:
Somebody, somewhere is going to meet their maker and they probably don’t know that there time is up. My prayer is that they have already found Christ as their personal Lord and savior, and when I am going to be walking around here on earth praising God, I hope they will be walking in Heaven praising God.

Prayer request 2:
I also want to pray for the Family of the person who is about to loose someone they love. It is a strange place to be again. Someone has to die so I can live. Just like Christ died for me so I can have eternal life.
There is a big part of me who would like it if no one else had to die for me, or I die and my parts/organs could be used for someone else to live. And I could spend my days walking streets of gold praising God, in no more pain or suffering with a fully functioning food processor. :-)

Prayer Request 3:
The doctors as the liver comes available will have the wisdom and discernment, when evaluating the organ. I know I can have faith that God has the perfect liver picked out for me.

Prayer Request 4:
The first transplant operation worked so well I hope and pray that the second one can be as good if not better. No complication! Another miracle! And that my body will accept it and everything will work so I can get my strength back and can serve God in this valley at Church, at the TV station, with friends fellowshipping.

Prayer Request 5:
That God can take control of all my fears, and weakness. So he can get all the glory from what I am going through. Since it is not about me, I hope I can continue to have the faith to just hang on and enjoy the ride.

Audience of One

It is so easy for me to get caught up in what is going on in my little world how I feel, and what I want, or need. I forget about the bigger picture that it is not about me. Being in the hospital and having nurses or doctors coming in all the time almost makes me feel like the world revolves around me. Then it hits me how selfish I have been in the center of my little world. Everything feels totally out of whack and it is easy to get worried and stressed out, but when I get out of the way and give up control, all the pressure goes away.

There is a song by Big Daddy Weave “Audience Of One” that reminds me of what it is all about.
To my audience of one, You are Father, and you are Son. As your spirit flows free, Let it find within me A heart that beats to praise you. And now just to know you more Has become my great reward To see your kingdom come And your will be done I only desire to be yours, Lord

(Ecclesiastes 12:13)
13 Now all has been heard; here is the conclusion of the matter: Fear God and keep his commandments, for this is the whole duty of man.

It takes a lot of pressure off when I don’t try to be in the center. I just have to hang on and enjoy the ride. This too will soon pass... (I hope it happens sooner then later)

Back out Again

Well now I have been sent home from the hospital again. They gave me another PICC line in my arm so I can get IV antibiotics since the bugs growing in my liver have become resistant to levaquin (Which is really strong oral stuff) so now I am on even stronger stuff.

So now I have 3 painful tubes into my body, two in my belly one in my arm, and the best part is there is no end in site. They don’t know when they can come out. I am becoming a mutant, with all the plastic attached to me. I am so ready for it to be all over.

Happy Forth!

Since I am stuck in the Hospital on this forth of July and can't go see fireworks and take pictures of them. I went looking through my photo library at my past years taking pictures of fire. Here are a few of my favorites to help celebrate the time.

The Hospital isn't all bad the 8th Floor does have a pretty good view south. I went walking in the hall and found a window that I could see Sugarhouse, Murry, Holladay? Sandy? West Jordan? Some staff came down from the Helipad and said they had a great view of the U Stadium. But I couldn't see it. Even though I have lived at the hospital I haven't met the right people to get me access to the roof :-( Oh well I still have time before the 24th :-)

So for the quick update I am still alive. Not feeling the greatest but we are still waiting on God to finish what he started.

Back in again

Once again I am back in the hospital with these stupid drains having issues. Now I have 2 of them. And haven’t felt like doing anything. Even writing a note for the world to read.