Cant wait to be in paradise with my honey!

2 days away until I'm in paradise with my honey! I can’t wait! I’m so stoked to be going to Hawaii with the one I love! It is a much-needed vacation that we both need. Time has flown by so fast and we have been so busy lately that we haven't planned our trip out yet. We have ideas on what we want to do and where we want to go, but not sure how it will all pan out.

There are so many things to do, where to start? Snorkeling? Surfing? Swimming? Shopping? Sailing? Lying on the beach? Snuba at Molokini Crater? Zip lining through the rainforests? Kayaking? Biking? Luaus?

Out of all the things we can do, I’m sure we will make the best of it. Once and a lifetime trip and we are going all out. Maybe we will only do a couple of those things, or maybe we will do them all. Either way the thing that matters the most is we are together in paradise! Will take lots of pictures and make a lot of memories.

Amanda Marie Trippet, I love you and am so lucky to have you in my life. 

Burning bridges...

I realized today that no matter how good of friends you are with someone, no matter how much you care about them, or no matter what that friendship means to you it might not always be there. I also realized how two-faced someone might be.

Some of you might know that in the past year I lost my best friend. I used to think he was a brother from another mother…and father. I loved him as if he was my brother all along, even though we had only known each other since junior year of high school. We had been through some ups and downs, but it always seemed to work it out and together we were again like best friends should. I went to him for everything, even if I had other people to go to, I still always went to him to talk to, to look for advice, or to vent to.

After a while he started noticing that I was unhappy, and that my personality had changed. I was having issues in my marriage and he pointed it out to me. He said I could stay with him if I needed to, or while he was out of town I could use his place to crash just to get out of the house. He told me that he didn’t liked seeing me unhappy and that I needed to do something about it. The problem was I had tried already, and I started to realize something. Love isn’t always what it seems. I wasn’t in love with the person I once was. I got married too young, yes, lesson learned, and it was a tough lesson at that. I walked away from my marriage a wiser person, knowing that I did the right thing because if you aren’t in love, why waste yours or the other persons time being married, life is short. It sucks knowing you hurt someone, but the truth is we both learned from it.

One day I was at his house and he had 2 cars in his driveway that he was fixing up to sell. I mentioned to him that my stepbrother needed a cheap car and asked how much he was selling the cars for. The cheapest car he said he would sell to my stepbrother for $1700. I just happened to be on my way to my dad’s house, so I told him I would let them know. I let my stepmom know about the car and gave them his number so they could call him and coordinate things if they were interested.  I know it’s bad to involve friends and family in buying and selling things to each other, but I trusted him.

Time goes by and about a month and a half later I got a call from my dad asking if I talked to my friend. I said yes, cause I was over there almost every day to hang out unless he was working on a car. My dad told me that they could not get in contact with him and they needed to so they could get the car they bought from him registered in their name. They didn’t tell me they had been dealing with this for the last month because they knew he was my best friend and didn’t want to put me in the middle of it, but that didn’t work so they had to. So I called my friend and told him that I couldn’t believe he would do that to my family, and that he just needed to fix it. He was my best friend and all I wanted was him to fix it so they didn’t have to pay more money to get the “cheap” car on the road.  Of course my friend was appalled by me telling him this and was offended that I didn’t fully believe him. That my stepbrother knew the whole time the issue with the title and why should he have to do anything else because he sold the car as-is. I understood he sold the car as-is, but I don’t think he thought about that when he sold it to his best friends family. It didn’t matter, he needed to fix the issue so I was not put in the middle anymore, and all I did was try and help everyone out. At this point my best friend would no longer talk to me. After I was separated from my wife I stopped by my friends house to talk to him, if he wasn’t going to answer my phone calls or texts he would have to talk to me in person. He came outside explained his side of the story, told me why he was upset, and let me explain what I had to deal with. About this time I found out that he had my wife who I was currently separated from getting a divorce over for dinner. I asked him if this was true and he said it was, but you know my business was mine and hers was hers and he wasn’t going to tell either of us about the other. About this time he said he had to go take a shower and went back inside.  I haven’t spoken with him since.

My friend and his fiancé got married this weekend. I was supposed to be the best man, but because of the car issue, and him and his fiancé hanging out with my ex-wife I was not invited. A few days ago I sent him a text message wishing him and his fiancé the best and apologizing for what had happened to our friendship. I know its not all my fault, but I wanted to change things so we could be friends again. I did not receive a text back, no response, or anything of the sort. No matter what happened I didn’t want to throw away a friendship. I have thought about everything that has happened and I realized its stupid to lose a friend over that. I realized that friends are important to have in your life and not to let the little things ruin that. I forgave him and thought he would do the same, but I guess I was wrong. 

Tyler, Texas...not where you would expect a world renowned specialist

So a little over 3 weeks ago I found out I grew a new bacteria in my lungs. What a shocker? A CFer with a new bacteria, not always a big deal, but this time it was a little different. It is a form of Mycobacterium, and this specific mycobacterium is tricky. It is called Mycobacterium Abscessus. I was extremely upset when i found out i grew this bacteria. I have horrible anxiety and as soon as i found out my mind started running, thinking about things that could happen, things that might happen, things that i didn't even know about, things i was making up in my mind, and why this happened to me.

Immediately i emailed my CF nurse to have the doctor call me. I wanted to know answers. I wanted to know why they did not tell me about this when i first grew it, why they neglected to tell me about it until 7 months later, what was the treatment, if i should be treated asap to get rid of it, or if i should worry about it.

Of course the doctor didn't call me until Friday afternoon at 4:45, i was afraid he wasn't going to call and i was going to have to deal with all my anxiety all weekend until Monday when i could start bugging them again to get answers. He told me he was not a specialist in this specific bacteria and that i would need to travel to Tyler to go see the specialist. To me this was not a good sign that I was having to drive 4 hours to go see someone cause my doctor couldn't do anything. He told me the only treatment for this specific bacteria was a year long treatment of IV antibiotics, which terrified me. He told me that "protocol" was that they don't treat it until you grow it 3 times or start having symptoms and a drop in pft's. This amazed me, why would you wait, why wouldn't you eradicate it before it caused health problems. He kept telling me he wanted me to go see the specialist in Tyler, that he could explain everything. Well this just made my anxiety 10 times worse. Since I hadn't been feeling great anyways I talked to him about admitting me for a "tune-up". He thought that was a good idea. On the 16th of July I went in for my admission. I spent 5 days in the hospital and got out on Friday to go home on IVs. I got a call from the University of Texas Health Science Center Tyler to set up my appointment with Dr. David Griffith. The soonest they could get me in was August 3rd, so i took it. Being two weeks out I had to deal with my anxiety until my appointment, which was not easy.

Thursday August 2nd Amanda and I got off work a little early and drove to Tyler. We stayed with a family friend for the night, so we didn't have to pay for a hotel. We got to Tyler at about 8:30pm and decided we better eat something before going to where we were staying. We stopped at Shogun Hibachi Japanese Restaurant for dinner.

Friday Morning we got up, did our treatments, and packed up our stuff. Christie who put us up for the night came home from her workout with some protein smoothies for Amanda and I. We packed up the fit, said our goodbyes and off we were to UTHSCT.

We arrive at UTHSCT and get inside at 8:55am and go into the Lung and Heart Center to check in. About 15 minutes later I went up to the counter and asked the lady if i was in the right places because my appointment was at 9. She told me to go to Radiology and get registered, get my chest x-ray, do spirometry, and when i was done to come back to see the doctor. So off i went. My anxiety was extremely high, i was easily agitated and was not happy with the customer service. At 9:30 I went up and asked what was going on, my appointment was at 9 for the x-ray, 9:15 for the spirometry and my doctor appointment was at 10, and now it was 9:30 and nothing had happened yet. The lady got me registered and said that they didn't order a chest x-ray, i told her they were supposed to and they told me to be there at 9 to do it. After registering she told me to go do my spirometry and then come back. The longer everything took, the more my anxiety got to me. I did my pft's and x-ray and back to the lung and heart center to see the doctor.

One of the first things the doctor told me was that there is no way to avoid Mycobacterium, its everywhere, mostly contaminated water and soil, not passed through people. Then he told me there are sub-species of Abscessus and that with the results he had, it looked like i had an easier sub-species to treat, but at this point he really didn't have enough information to be 100% sure. He told me that right now its a waiting game, and that I needed to just live life and not worry about it until he gets some more information on the bacteria growing. One of the reasons i worry so much is because this could be a life changing decision when it comes to treatment and me working. If I go on a years worth of antibiotics to get rid of this thing, am i going to be able to work. If i cant work then i cant pay for my house, car, bills etc. If i cant work I cant get insurance through work, so what plans am i going to put in place in case of that happening. I am terrified that i will not be able to afford to live. One of the questions Amanda had for him was if this bacteria was one that prevented people from being eligible for a lung transplant. He explained that yes they will not do a lung transplant unless this bacteria is eradicated.

My anxiety was relieved to a point, but not completely. I pray that this bacteria will go away on its own and i wont need treatment. I am scared for the treatment because i don't know how it will affect me. I don't know if i will be able to work while doing a year long treatment of IV antibiotics. I don't know what i would do with my house if i was on a years worth of antibiotics if i cant work. I don't want to not be able to work. I don't know how i will get health insurance if i don't work, or if i can get insurance how i will pay copays. All i can do is put it in God's hands and trust everything will work out the way he plans it.

I scheduled an appointment for October 5th, so an update on this topic will be around then. I hate waiting, I am a planner and don't like that i cant plan anything until i get more information, but don't really have a choice on this one.

Amanda has been my greatest support through all of this. I have never felt so safe. She comforts me that everything will work out, and we will do what we need to take care of this and us. I love her so much, she means the world to me. It is great having someone that knows exactly how i feel with everything going on.

Paco & Ting Ting a.k.a. Monster & Princess

Today was a long day...

Started off with waking up late and having to hurry to get to work. On the way to work I watched 2 pit bulls cross the road to the median, run a ways down the median and cross back to the other side. Not really thinking about it I continued the couple hundred yards on to work. I pulled in my parking space and started to think about it, "what if that was mugen?", "What would I want someone to do if my dog was loose crossing dangerous roads and running free?". So started my car back up and drove back to see where they went. I got back to the shopping center near my work and there they were running around it. I stopped and whistled to see if they would respond. They immediately turned around and ran  up to my car. They were wagging their tails so i wasnt afraid, and as soon as i got out of the car they jumped on me and started licking me like they were excited to see me. I got them to get into my car, which i had set up for Mugen to ride with me so it was dog friendly and ready to go. I took them back to my work and they did not want to get out of the car, they just wanted to sit there inside it in the shade. I finally got them out, but since i did not have leashes for them had to hold them by their collars. I took them to the window outside my moms office and told her to come help me, and bring a leash if she had one. She didnt so she came out with an extension cord to use as one. While she was helping me, someone let Killer out of the office and he ran over to where we were. Immediately he barked at the dogs to protect my mom and that was a mistake, the pit bulls started barking, growing and pulling to get to killer. I yelled at my mom to put Killer back in the office, and we took the dogs into the laundry room and shut the door. 

After getting them situated in the laundry room, i went to make up posters. I printed out some posters and left to hang them up in the area. I stopped by some apartments, dunkin donuts, flex fit gym, and subway to let them know in case the owner came looking for them. As soon as i got back to the office, i posted on craigslist and facebook about the dogs in case someone was looking online for them. I got some work done, and off to lunch i went. I came home for lunch and when i left to go back to work i took 2 leashes and a harness from the house so that i could control the dogs and take them out to go to the bathroom when i got back to work. When i got back to work i put the harness on "Monster" and put the leashes on him and "Princess". I took them outside to use the bathroom, and decided to see if they would lead me "home" since a lot of dogs know where they live even if they wander off. After walking about half a mile they were tired and stopped under a tree. At this point i figured they didnt know where they were going and took them back to work. Still no call and i was starting to get anxious. I was not sure what i was going to do with the dogs when i got off work. I felt bad taking them home cause they would have to stay outside, but i didnt want them to go to the pound and worry about them being given away or euthanized. I figured I had one option left, take them to the vet and see if they were microchipped, and if they werent i could take them home and see if someone else could come get them so i wasnt forced to call the pound. Luckily I got to the vet and they both were microchipped. The vet called the owner to come pick them up. I waited until the owner got there to make sure they went home safely. When he got there he said their names were Paco and Ting Ting. Not what i expected, i liked the names i gave them better, hah. 

When i got home i was interrogated by Mugen, he knew i had been around other dogs and was jealous. He sniffed me all over. At this point i smelled disgusting between me sweating and the dogs slobbering on me, so i took a shower. After the shower I started washing set ups while Amanda cooked dinner. She was making cubed steak parmesan. She is Amazing, and its awesome how she cooks for 2 CFers. Not only does she make the best meals, she gives me the love and support i need. I am so lucky i found her.

Now sitting in bed exhausted doing treatments. Anxious about Friday because I will be in Tyler at the University of Texas Health Science Center talking to Dr. Griffith about Mycobacterium Abscessus which i have grown twice now. I am not sure what will happen with this "bug" and I am worried, but God has a plan for me. I know enough about Abscessus that i know its not an easy treatment, and its long term. It could possibly be a "life-changing" bacteria. Not sure where it will lead me in life, but I will figure it out.