10 Days Since #6!

It may seem crazy to admit this; but in the whirlwind of the last few months I totally forgot about this blog. I am frustrated about it too, because there have been some incredibly hard days that I wished I could have recorded to look back on. Not to dwell, but to learn all I can from them. 

Today it donned on me that I needed to update everyone on my progress since May 19th. I had my 6th craniotomy just 10 days ago. It seems like just yesterday in some ways, and in others it feels like its already been months. I would say generally I am healing faster than I would expect, and in other ways I am still in quite a bit of pain. 

I am still experiencing a considerable amount of swelling, and pain. When I wake up each day my left eye is very swollen. Since I don't take pain medicine all night, my first feeling when waking up is sharp, severe pain. I hurry and get medicine in my system, and start ice-ing my head. I am surprised by the incision, and how it is looking. I got my staples out on Friday, and it already feels better, and is healing quicker. I am surprised how much pain I am still in, even in weird places. My head as whole hurts, and feels different. This time they cut into the jaw part of my skull; and it hurts pretty bad to open my mouth. I am also having a ton of pain in my leg; where they took the fat graph to use to patch the sinus....

I still have a pretty good limp, and am just trying to allow myself to heal, and to take every thing as slowly as I can. I thought this whole surgery would be easier, since I had done it 5 times before, but in all seriousness this whole process has been the hardest by far...even coming out of surgery I was in unbelievable pain. Quite honestly I don't think I would have done it if my friends weren't there. MAJOR thank you to two beautiful ladies Brooke Dayley and Gretchen Myler, who both stayed with me for hours after surgery, and both drove up from Idaho just to be with me. My mom also came and dedicated several hours with me, and it made me feel surrounded by love in one of the hardest moments of my life. I love you guys, and don't think I could ever repay the love you have shown me.... Also Kayla Adams, my good friend who has been by my side every single surgery. She has chosen to love and stand by me, and even drove me home with just a little notice. She will never know what her friendship has meant to me! 

THE BIG QUESTION....Am I still leaking CSF? I don't have an answer really, as it takes a few weeks usually to get normal surgical swelling and fluids gone before I truly know if the surgery was successful. I am hopeful, but not allowing myself to get too excited. I promise to keep you posted! 

I just spent the last several minutes trying to put into actual thoughts, and words how I feel, and how I am today. Truthfully, and without exaggeration I can say that the last month has been the hardest of my entire life. I have experienced pain in the last several days that I never knew was possible. I am grateful for it in some ways, because it has allowed me to be open, and real with myself. I truly believe pain can make us better, more refined human beings. I am trying to allow my pain to make me the man God needs me to be. Pain comes in all ways, and truthfully emotional pain is far more painful than any physical pain I have ever experienced. 

As I look back at the last few years, even further than fighting this CSF leak the last two years...I can see where God has really given me opportunities to learn. I have to believe that there is something incredible ahead of me...and if I allow myself to change, I can be an even better human being, father, friend, son, and inspire many people around me to be better in the face of their trials. One day I want to elaborate on something that happened to me when I had to decide what surgery I was going to do....when I was faced with the possibility of death, or being a vegetable, or not doing surgery I thought to myself about all we have accomplished through HARD THINGS; and I got brave and made my hard decisions.... 

WE CAN DO HARD THINGS! But, thats not it....we can also LEARN and INSPIRE though those hard things. We have the ability to change and inspire those around us! Look at this movement. I simply share my scary moments, and am as vulnerable with Facebook as I am with my family....and we have inspired many many people to overcome their scary moment. Steve Jobs said "The people who are CRAZY enough to think they can change the world; are the ones who ACTUALLY change the world" and we can...we can make changes for the positive.  

I am scared of the future. I have nightmares every night about my medical debt. I have nightmares about my funeral. I lose sleep about the future, about my health. I am scared that I have given nearly all I have to live, and now I am to a point where I don't want to fight it anymore. I don't think I can do another surgery. I don't think I will fight this CSF leak if it wasnt fixed this surgery. I don't think I want to fight for people who won't fight for me anymore. I have spent my whole life wanting my Dad to want me, and have literally done everything I can to earn his respect, and now I just don't care anymore. I know my worth. I am good enough, and if someone chooses not to see my worth, that is their loss. 

Maybe thats what God wanted from me all along; just to be ok with the things that I can't control, and focus more on the things that I can control. I know that the last paragraph sounds sad, and depressing...but its not. It is actually a great place for me to be, and I am proud to say I am here. I can see a great future, or a bumpy road ahead. The choice is mine...and I want to remain close to God, and the positive things this world has to offer.... 

That being said, the biggest weight of mine is financial. I have $79,000 in debt that I can not pay. I will work for the rest of my life to try to pay it...and hope and pray that a path opens to help me take care of those obligations. Because I didn't fight this hard to survive, only to feel trapped by the weight of money. 

I hope you can appreciate my openness, and find a way to be open with your struggles. Its ok to be real, and its ok to struggle. We all have battles we fight...its how we fight them that determines who we really are....I wrote this in the middle of the night while having quite a bit of pain, and on several medications....dont judge me for spelling errors, and grammar issues, Please! 

God Bless You! Thank you in advance for your support! I would love to know your feedback; please comment!

I am tired....

Happy Wednesday!

I have been thinking and really feeling something the last few months. Its something that I haven't really wanted to admit, or give too much of my attention to, because I learned a long time ago to ignore my problems, and try to press on...but at this stage in my life, I am learning that isn't the smart, or even the healthy thing to do anymore. Thankfully I have learned that lesson...as it has made my life easier...

The feeling is simple, and yet profound. I am tired. Thats it...that is the major thought that is controlling my mind. Its holding me back, and limiting me from being in my happy place...

I am tired? Yes. I am tired of a lot of things. I am tried of begin sick. I am tired of feeling alone. I am tired of having to try so hard to have a normal day. I am tired of being scared of the future. I am tired of fighting so hard to have people near me. I am tired of fighting to have a family near me. I am tired of feeling inadequate. I am tired of feeling like I should doubt my heart. I am tired of having to be so strong. I am tried of having to ask people to pay attention to my needs. I am tired of watching my mother suffer, and not getting the help she deserves. I am tired of feeling like my Dad is just a guy that never wanted me to be in his life. I am tried of feeling like I am not living up to the standard I should be with my kids. I am tired of having to be the bigger person. I am tired of being afraid to show certain parts of who I am. I am tired of loving others so hard, when I feel so much of the returned love is conditional.

Obviously not all of those make sense. I know some of them are just silly as well; but it goes to the point where I feel like I have had to fight so hard to be alive, and well this last year, that I just feel exhausted. I realize that I have come so far from this trial, and other trails that I quietly face, and to that end I am extremely grateful, but I am ready for a break. I feel like I need that I need something to come into my life that wants to be here, that chooses my whole heartedly, and who is willing to be next to me as I go through the storms that life plans to sent to me. I think that is another reason I feel like I do...I have had a lot of support this last 18 months, but I haven't been able to let down my walls and fully rely on someone to be there when I need them. Some of that is my fault, and my fears to let them down, and the others are that there just hasn't been someone who could fill in that role, and fully become all that I have needed them to be.

I will continue in spite of begin tired though. Even if I have to slow way down, and even take the smallest of baby steps each day, I will do that. I am just saying that my hope is that God has a plan that will allow me to go through the remainder of my trial, and have the ability to fully let someone in to be there, and choose me to the extent that I won't have to worry about whether or not I will be alone...

As always these are just my chaotic thoughts through my crazy life, especially today as I set up my next Neurosurgery appointment today, and fear what 2017 will bring. I am begin open and vulnerable with my real thoughts in the hopes that it helps you steer through this life a little more clearly, and realize that you are not alone in your struggles...

We can do hard things. I am proof of that, and so are you!

Goodnight!

The More REAL I Get...

As we are preparing for Christmas in our home...we have been extremely busy. I have been trying to overcome my new found short term memory struggles, and as such I feel like I am running around in circles. I believe that we all go through cycles in this life when we are trying to overcome a new trial, or a new change. At times we find ourselves in the area of struggle, or uncomfort. It has been the new normal for me as this last 18 months has played out...as each stage of my sickness has manifested itself, I have had to adjust, and at times the level of discomfort has been hard to deal, but we always find a way don't we? We may have to dig deep, and push to lengths that would try the strongest among us, but still find a way.

I may be the only one in the world that does this...but I have found myself finally getting in a quiet moment, and just literally breaking down. The chaos of life is at times brain melting isn't it? In a senerio when you are fighting for your life, or the basic principles of life, it becomes nearly impossible for anyone to understand, and yet we still find a way. We still don't allow ourselves to completely give up.

Since my first onset of sickness, to today, I increasingly get to a point when I am finally in a quiet safe place, I break down. I allow myself to show my truest emotions, and often cry. I allow all the walls of strength, or pride, to come crashing down, and tears fall! Normally I would run from that, or quickly wipe them away...but in these moments I have found that the more real I get with myself, the better I feel. I also allow myself to pray, out loud! I have a deep and open conversation with God! What a blessing it is to be able to be frank, and honest with such a man. I express my frustration and my anger that HE is allowing me to go through this, and then after it is all done, I re commit my relationship to him, and re build those walls that need to be standing to live a normal life. Some may read that, and think wow Dusty, your a wreak, or a weak man, or that I might need to rush to my nearest psychologist. But it is in THAT very thought that I believe contributes to depression, and the strong level of unhappiness that I see all around me in this life. LIFE is HARD. It is UNFAIR, and IT IS OK to be sad, and frustrated. It is ok to cry, and it is very much so ok to let it out, as long as afterward you can recommit your goals, and get to a place where you can keep pushing. 

It is IN THIS process that I have found gets me to my highest level of happiness in this life. I have to be ok with who I am. I am different, and that is a blessing! We aren't all supposed to be the same, look the same, and have the same reactions in this journey we call life....

My journey is different. It has been different from the day I was born, and will continue to be through out the rest of my journey. My goal is to make it balance out, and to be able to use my differences aka strengths to help those around me. To be a light, instead of the guy who rushes past you, and flips you off because you cut him off on the interstate. I have a long, long way to go....but I am going to get there. Even if it takes the rest of my life!

To the future my friends....

Dad Your Breath Stinks!!!

Today was a good day.

The last few weeks, there has been one thing thats been consistent. I have felt like I have been swirling in the land of disappointment, and frustration. I have bounced around from feeling ok, to being really frustrated. Logically I know that its just me trying to adjust to this new life. It is also me just trying to be ok with the circumstances I find myself in...but it isn't always easy to think logically.

But today was good because I kept positive. I kept my eye on the prize; aka being better. There were plenty of things that could have frustrated me, and pushed me over to the "agitated" side, but today I won, and it felt good. I think this life is about building a foundation of "good" bricks. When we all face a bad day, we learn to build around that, and keep building toward the places we want. Not all of us are able to do that though, certainly not everyone even cares. I do though, and want to be my best self at all times, mostly because I have two little dudes who depend on me to be that best self. I know that when I am able to be that person, their lives will be better.

I have them sleeping in the room next to mine. Tonight we watched Santa Clause with Tim Allen, and it is fun to watch it with them, as I can clearly remember being that young, and loving the magic of that show, and mostly the belief in Christmas. As we cuddled on the couch, yes we cuddle, and by cuddle I mean them laying next to me with their legs intertwined around me. They have to be touching me, and I love to have them near. I know these guys have been mine for much longer than this short life we live... But as we watched the movie Rustin leaned into me and said, Dad your breath stinks...I laughed so so hard! I can't smell anything, so I was embarrassed and had no idea. We both laughed, and I quickly brushed my teeth!

While going to get them in Logan, I finally stopped at my "spot" to get a picture. 18 months ago my life was changed in this very spot...and I am glad I am able to feel as good as I do today. Rustin also told me that he remembers when I got sick, and that he was being loud, and I snapped at him because he was hurting my head...when we talked about that tonight, I was feeling sad that he remembers my sickness so vividly, and I am sad that he remembers he made my head hurt more...I made sure he knew that it wasn't him that made me sick, and I took the opportunity to make sure he knew that I was sorry for snapping at him. I held him close, and told him how much I loved him. I never, ever had that from my father...I can't ever remember feeling loved and wanted by him, and it is clear to me that both of my kids need that from me. I haven't been able to do that in the ways I have wanted to in the last 18 months of being sick, but the beauty of life is that we get opportunities every single day to make the changes we need to make, and I am going to give all I have to make sure the little men I get to raise know they are loved, and that I will always stand beside them and be there...

Thank you for reading my ramblings...I hope it all makes sense. I never go back and read, or change because I want this to be real, and raw....until next time! Dusty

What Do YOU Want? What MUST You Do To Get There?!

Happy Thanksgiving!

Last night I couldn't sleep. In fact I had more nightmares; and they were pretty intense. It seems thats a new normal for me, at least for now. I believe it is because of the 12 surgeries over the last 18 months, and the damage it has caused to my body. Even just the amount of medication that I have been under would cause damage, and I think as it cleans out of my system, I will be having these symptoms. Its a small price to pay to be alive, and I am going to truck through it with as positive of an attitude as I can....

But because I didnt sleep last night, I have been fighting a massive migraine all day. Its another new normal for me, but this one is a little harder to fight. I am grateful that it came on a day off, so I don't have to miss work. I had to miss Thanksgiving Dinner today, because if I got out of bed, I would have been in the bathroom, throwing up.

As I finally felt good enough to get out of bed, I found myself feeling sorry for myself. When I get into that mode, it is a slippery slope, and suddenly I am reliving the whole trial again. Suddenly I am sad about the things I have lost in the last 18 months. I am sad about where I am currently, and how hard I am having to push myself just to live a normal life. Thankfully after a little bit of sad song-ing it, I find my bearings....

I honestly believe I am where I am at, alive, and as healthy as I am blessed to be, because of my positive attitude. There as been a big monster, that has tried to take my life, and so far, I have fought back, and won! So I push myself to get back to that place in every way, as quickly as I can. But tonight as I finally got to that "whole" place, I realized something, and then as I was looking at memes, I noticed a theme...

What do I want? Where do I want to be? What do I need to do to get there? What do I need to change to put me in line with the things I want?

I think in order to reach the placed we aspire to, we must be able to answer these....

--Dusty

Out of Sight; Out of Mind...

Well today marks the 22nd day after my 5th craniotomy. My forehead is now mostly normal, and I am feeling better everyday, at least physically. I have been sleeping better, and have just a minimal headache most of the time. My implant that was placed in my #holeintheskull is pretty noticeable as the swelling has gone down, but I am hoping that will fade as time goes on. Honestly I didnt expect to feel as good this quickly, again physically speaking. My hope is that as I push myself, I will continue to quickly improve, and be able to stay away from the hospital, and from surgery for a very long time.

Emotionally, it is a different story. I feel like I am in a fog, a dense fog that is hard to navigate at times. Partly because I think I just disconnected emotionally this last year, just to survive. I think we as humans are given the ability to do that, out of survival. While I think that not only led to my positivity, and being able to inspire others, it also led to my survival. Yet, the things that NEED to be processed are still waiting for me to honestly address them. The thought of doing so is terrifying, because I can feel in my soul that its a BIG thing that has happened to me, and I am afraid processing them emotionally will change me even further that I have already changed.

In the last 22 days, I have gradually pushed myself. I have been working, and loving it by the way. I am able to go out, and be the Dusty that I have always wanted to be. I am trying to be the guy who loves deeply, and works harder than anyone of my peers. The guy who tries to leave every person better than found them, and hopefully leaves a lasting mark, to spare those I meet from the pains I have experienced in my short life...I now work at Costco, and am back at 100myFM on the weekdays. I have been able to set myself apart in each venture, and have received praise for being extraordinary. Good seeds have been planted, and I will continue to push myself in these areas to be successful, and hopefully dig myself out of the hole that is left now that I am on this side of an 18 month/12 surgery battle.

But as I get into a quiet moment, and when I am finally alone, I feel a piece of my heart aching. It is aching for love, and respect. It is aching for the praise that comes from people that truly love you. I am wanting now more than ever to know that the people that are in my life, are truly there, and that they want to be here, with me. I am hoping that the people that I have chosen to be in my life, are seeing me, and loving me, as I love them. I feel like I have always been the one to love deeper, and to be stronger. I have been the one to hold on when others get weak, and to ignore my own needs, when they need to take care of themselves.

I am trying to let things go that have held me back. I am wanting to change the cycle that I have been living in for so long. My family, well I guess I should say people that should be my family haven't been there for me in this last 18 months like I have wanted. I have had to rely on a few people who have been there for me, some more than others. But as I look back at my life, there hasn't ever really been a great deal of support for me, from my parents, or even grandparents. I have always justified it, and tried as hard as I could to be the bigger person. to suck it up if you will, and to keep loving them, and being there for them, like I always wanted someone there for me, because it was the "right" thing to do...and because my conscience wouldn't allow me to be anything less...I have always felt as if the people that "love" me, they do it with reservations.

The saying "Out of SIGHT; OUT of MIND" has been popping up in my mind lately. I truly feel like as soon as I am not around, people that should love me, forget about me, and then just take care of their own needs. It is something that I am learning to deal with, and I am learning to be ok with pushing myself, and loving myself. I just so badly want to be loved, and respected, in the same ways I  love, and respect. As I look around at this present moment, I don't feel that from the people that I would hope to feel it from, and in fact I feel now more than ever that the love that is given, can be taken away, or forgotten about when it isn't convenient anymore, and that is one of the most frightening things that I have ever dealt with....

I am 31 years old, and feel a huge hole in my life. There is only one thing that makes it all fall into place for me, and one thing that rights the wrongs in my mind, and that is when I am being open, and vulnerable, and helping people who find themselves in a similar situation as me. I don't know what the future holds, in many areas, but I do know that is what I want to continue.

Being KIND to ONE another is truly more than just a motto, I want it to be my way of life.....

Just some thoughts from a man who finds himself on the other side of a life changing trial. and one who just wants to make a difference in the world, and to change the course of my life, and to reach a place of happiness, and peace....

Dusty

The BIGGEST update I hope to ever make....

The Johns Boys in Oct 2016

I am a little sad that this page hasn't been updated with the events of my 2016! Its been quite the roller coaster! I will do my best to update in all of the area's that I can remember(I am struggling in the memory department these days, I guess 4 craniotomies will do that to you)and then I will send you to The Bee Happy Movement Facebook Page www.facebook.com/thebeehappypage to see all the videos, and posts that I have made there. It was easier for me to pop on there after a big surgery, or following a disappointing medical appointment, and talk about my frustrations. I have wanted to always be open, and vulnerable during this time, to use it as a platform to do good, and hopefully inspire someone else who was going through a hard patch, to "bee stronger" and "bee better. My hope is that as these days become a distant memory for me, those who see this blog, and who are members of the Facebook page, will say it has helped them, even in a small way. 

After several lumbar punctures, and hours in an MRI to confirm CSF LEAK in JAN 2016!

So starting off 2016, as I remember it, we were told that I needed to go see a neurosurgeon. My sinus doctors felt like they had done all they could, that they weren't going to be able to stop the leak. Looking back I wished they would have said that after they had failed with the 2nd surgery, or the 3rd. They openly told me they had never had anyone require more than 2, and they attempted 5 sinus flap repairs to stop my csf leak. I fought them hard on the idea of going to a neurologist. I knew deep down it would be a hard battle, yet I didn't think it would be as hard as it turned out to be. After fighting with them over, and over, I finally saw the neurologist. 

The other problem that came up, which I am still quite upset about is that in 2016, my insurance decided that they would change EVERYONE in Idaho to a new plan, that made me out of network for The University of Utah, which is where I had received all of my care. They didn't say a word about the change, until it was too late for me, so I had to switch to Intermountain Medical Center in Murray Utah. I honestly believe that THIS change will be known as a reason I am still struggling, and undergoing surgery, after surgery. I don't tend to hold on to things that have happened in the past, but I am still angry about this one. I did however "Just Keep Swimming" as little Nemo on Fining  Nemo would teach me so many years ago. 

I finally got an appointment with Dr. Macdonald. A 20 year veteran in the neurosurgery field, and in our appointment he pointed out that I actually had a few csf leaks in my skull base, and one of them would never stop until I had this craniotomy that I had been dreading. As soon as he said that, I was in, I have every single day promised to do whatever I could to get back to full health. I have been scared, and experienced more pain than I ever had in my life, but in my mind it was a small price to pay to get better for my kids, for my family, and to become an even better person through it. I agreed to it, and thought to myself....how can I make THIS hard thing I am going through a GOOD thing....and it was just then that I heard of a young mother who had died. I was instantly grateful that even though I was pushed to my brink, I was still alive. I was still given this gift to live, and become something. It was almost as if the idea was planted in my mind, and we pushed forward. I told my supporters, and the people on my radio station that if we could raise $10,000 I would have Tayt Anderson(the little boy who needed a new heart, and Ellen's Boyfriend) shave my head. First of all the idea of shaving my head is something that I would never consider if I didnt have too, but it was for a good cause. I through a huge number out there, and WE HIT THE GOAL! A beautiful family had $10,000 to help them with the huge burden of funeral expenses, and we shaved my head as promised! 

Tayt Shaving Dusty's Head!

The awesome thing about Tayt, and his beautiful mother Chrissy, is when I met them many years before doing a Primary Children's Radio-thon. I developed a beautiful relationship with Tayt. He touched my heart. The second I saw this magical little dude, who had been fighting for his life, he changed me. I thank God that he allotted that to happen, because when I very first got sick, I knew I could choose to "Just Keep Swimming" and to make a difference through my trial. And so The Bee Happy Movement, and my positive attitude was created. I am so grateful that this young man shaved my head, and then helped me have the courage to have my first craniotomy. 

The other thing that gave me the courage to go, and do as I needed to do was the people around me. I have some incredible supporters, and they started to help me push The Bee Happy Movement. I had this crazy idea that on the day, and time of my surgery, we would have people holding signs to remind people to BEE HAPPY! People from all over Idaho, and really several other locations in the United States!

In fact as my good friend and I pulled into the hospital, there were like 30 people holding up signs supporting me! Telling me to BEE HAPPY, and to BEE STRONG! Another strong friend of my Kayla Adams was there every single day with me in the hospital, every moment she stood by...

Day of Surgery - MARCH 11, 2016

I will say that surgery was rough. Craniotomies are the tough. When I woke up, I was just grateful to have survived. I was trying to be tough during that whole week being stuck in the hospital, but honestly I was really struggling deep inside. I didnt ever think about what it would feel like to have your face peeled off, and your skull sawed into....I didnt anticipate not being able to recognize myself. I would honestly look in the mirror, and just cry. It shook me to my core, but I learned a long time ago that it is much easier to be positive, than it is to be negative. I also am grateful that so many people were watching, and emailing me saying my story helped them, because it gave me the drive I needed to "Just Keep Swimming" 

During all of this, and still to this day as I write this update, the HARDEST thing of all has been missing my sons. It has been not being right next to them, not seeing them, and having them worry about me. I would take any pain over that emotional pain, and seeing worry in their little eyes. I had them stop by the hospital, and it was good and bad. As I look at the picture below; I am saddened by the sadness I see in my oldest son. It was good because it again gave me strength to keep going... 

Hospital visit 6 days after craniotomy! 

I was in the hospital in Salt Lake for one week, and then I got to go home. Honestly I knew instantly that something was off, I still tasted fluid, only this time it was more intense. I couldn't smell ANYTHING, and couldn't taste any food, but I could distinctly taste fluid. I was only home one day when I called Dr Macdonald to tell him. He wanted me to wait a few days, to see if we could get the leak to stop...and instead of stopping, it got worse. Anytime I would exert myself, it would drip. They gave me until Monday morning, and if it hadn't stopped, I would need to go back down to Intermountain Medical Center. I got on Facebook, and begged for people to fast, and pray. I honestly believe in miracles, and felt like I deserved one...turns out it wasn't part of my path, and so I returned to Salt Lake that Monday to be re-admitted to IMC! 

When I got there, they got me all set up, put another lumbar drain in, where they drained my CSF so they could see where I was leaking. Turns out that I was actually leaking through the exact same spot they had just fixed. I had somehow blown a hole through the repair, and had air pockets in my brain. I was expecting to be in the CT, and MRI scanner for hours. 10 minutes after the first test, they rushed me back to my room, and Dr. Macdonald came to tell me the news. It meant that I needed another craniotomy to fix. I was devastated but I knew I was out of options. The next morning as they wheeled me down to surgery something felt off...and the Doctor was in such a hurry. As they put me under he was yelling at everyone to make sure they hurried too. When I woke up, the leaking seemed slower, and I went home in 7 days with out any more incident. 

Although three weeks later, out of the blue, after all of the swelling had gone down, I started to notice some swelling above my eyebrow. The next day it got a little bit worse, and then it kept getting worse until my eye was completely swollen shut. I called the doctor, and he was out of town, so his assistant dismissed it as csf, and then told me I would be fine. So I waited another day, feeling like crap, and called again, the swelling kept getting worse, my fever was getting higher and higher, and so I finally went into to ER in Pocatello. The Doctors there called my Dr, and his assistant said? Its csf, leave it be! They didnt do any tests because of this one particular nurse...the problem with that is that csf didnt have any access to my forehead. It couldn't have been causing the swelling. Finally they told me to casually come back to SLC. They admitted me to the hospital, and the second the doctor saw me, he hurried and grabbed a needle, and said that swelling is infection. I lost it! What?!? 

Right - Swelling Day Before Admission -- Left - 6 Weeks later

Everyone left me, because they had to go back to work, and I was all alone, getting a tremendous amount of antibiotics. The next morning they out of the blue come into my room to take me to surgery. I was shocked, and totally unprepared. Nobody was near me, no family, no friends, it was just me, and I was going to go down to have a life threatening surgery performed to remove the infection. I can say this with absolute clarity, and positivity...I have never been more scared, and never felt more alone. I couldn't breathe, and I did everything I could to get out of it. Three nurses were there, waiting for me, and I begged them not to take me. While they were there I scrambled and was texting my best friend. He messaged be back, calmed me down, and then they took my phone, put it in a closet, and off we went. I literally bawled my eyes out the whole way from the 14th floor to the 2nd surgical floor...something different happened this time though. Instead of being on an inside operating room, with no sun light, we rounded the corner, and the Salt Lake Mountains were beaming with the amazing sun shining through the floor to ceiling windows. Right at that moment the warmth from the Sun was a sign to me. I was going to be ok, and I could do this. At that moment I repeated to myself "I can do hard things..." and took a deep breath, and entered that operating room with faith, and positivity. That surgery actually went really well, considering what it could have been. They were able to save the bone(at least for a little while) and I was alive! I didn't have to go to the ICU either!  The infection was so bad that they removed TWO solo cups full of infection. It was actually sitting on my csf sack on the brain, and had it penetrated through that, I would have almost certainly died. 

Blessed? In more ways than one, and in this experience its is hard not to see, and feel the blessings, that come from my maker. He knows me, and all of the pain, sadness, sorrow, and frustrations are for a reason, even if I don't completely understand. That was my THIRD craniotomy. A few hours after I got out of surgery, they had me on round the clock antibiotics, and an infectious disease doctor came up to my room. He had to know why I didnt have the shunt put in weeks prior?! I told him that after Dr. Macdonald wanted to do it, I just didnt feel right about it, and felt strongly enough about not doing it that I made up an excuse that I just needed a few weeks off medications. The doctor said to me he as astonished, and believed had I gotten the shunt a few weeks prior, I would have died long before I had been treated at the hospital. Again; I have been very very blessed. I know that there is a higher power keeping me safe. 

After the swelling came down, my #holeintheskull 

Since then, I have had three rounds of 6 week long antibiotic treatments. I did have a 4th craniotomy to remove my skull flap, and have been looking rather weird to say the least with a missing hole on my head. I have fought off a blood clot, and had two surgeries to remove a kidney stone. I have pushed harder than I have ever had to push before, and I know that I have come to this point as a stronger, better version of myself. I am now going to counseling, and opening up not only about this trial, but my whole life, and recognizing areas where I need improvement. I have put up boundaries with people, especially some of my family that have needed them, even though that hurts me so badly, I know it must be that way, so I hope for things to be better in the future. I have even in the last few days realized hard lessons about my current situation that need to change, and I am pushing myself to be brave enough to deal with them. I am now just 5 days away from my 5th craniotomy to place a prosthetic piece to protect my skull, and that will be a huge relief off my plate. 

I am what I choose to be. I am a good person, who's had my share of trials, but I am proud of the way I have handled most of them, and know we are making a change with the Bee Happy Movement! I get emails from people nearly everyday expressing how my openness has helped them, and so I keep doing what I feel is right! 

Tomorrow is a new day, and a new chance to make all my dreams come true, and to be the Father, and friend I have always wanted to be... 

I STILL want to MEET Ellen...

We CAN do HARD things....

Dusty 

A time for reflection...

A time for reflection... 

I have felt over the last few days that my head, and my heart are trying to unite. They have seemed divided for some time. I think as I experience this, it's interesting to me that we have to allow our minds to teach us, in small tender moments. 

It seems like every day I am being taught so much more then even I understand. Sometimes life isn't fair, and sometimes things don't work out the way we want. I have certainly had my fair share of that happening. I hope that as I near the end of this health trial, my next chapter of life will be able to come, and happiness will surround me, and my little family.  

I am not the same person I was yesterday, a month ago, and certainly a much better person than I was a year ago. I am anxious to be healthy finally to be able to work hard, and put myself in the life I have always wanted. The things I want seem more clear than ever! I do really believe the best is yet to come, and there are hard decisions to be made, and definetly situations that will push me to my brink; but the rewards will be worth it. I am worth it. I deserve the best, and can't settle for less! 

My battle is making sure than I take care of myself, while remaining true to being the guy who cares deeply for those around me, even if they don't show me the same respect. I determine my attitude, and my reactions. Someone else's inability to see my worth doesn't make me any less valuable. 

Video Update - December 12, 2015

Love you all!

Dusty

Truth. Honesty. Integrity

Truth. Honesty. Integrity.

Words that are more than words. They are qualities that seem to have been lost in our generation. It seems everyone is just out to 'look' the best they can! The story you tell in word, and in action in our lives seems more and more to be a facade. Its easy to go and buy a new car, new shiny clothes, and fancy makeup to make you feel better about who you are, but I don't think it means a whole lot honestly.

Actions speak louder than words. You ever heard that saying before? I would like to take it a step further. Who you are when no one is watching, and the REAL truths that make up who you are are the things that matter in this life! THOSE things are the real defining characteristics that make up your happiness level. You can lie to yourself, and to those around you all you want. In the end it will only equal more unhappiness, and more discontent with yourself, and that will not lead to anything positive, I assure you.

I have been a part of this wave of trying to fit it, and look at my shiny new iPhone. I have also realized that they are a distraction from the real things that are going on. I am tired of seeing people around me tell me what they think I want to hear. I am tired of trying to figure out if someone is lying to me. Just be honest, tell me the truth, and if that happens, I will be more than happy to be completely open with you in return.

My main goal at this moment in my life, after being changed so much by this #csfleak, is to be honest, faithful, and true; ALWAYS! That isn't easy, but I am deeply committed to it, because I know from experience that it equals the highest level of happiness in my life. I am also going to be less, and less welcoming to those people around me who aren't being that, to me, and in their own life.

Just some things that are on my mind this night! I hope you agree. We nee more Truth, Honesty, and Integrity in our world.

Know your insecurities...and BEE strong!

Today has been quite a day. As I woke up I could feel it, physically today was going to be challenging. It was one of the worse days I have had in months. Sometimes it effects just my head, like headaches, and pressure that are hard to control, but go away as quick as I lay down. Today though my vision was quite blurry, and my whole body ached. Its hard I think because I expect so much of myself, and I always have. It is in some ways why I made it out of my childhood as good off as I did. Its hard too because I know people around me expect a lot out of me too, and that adds a lot of pressure, again mostly my own fault. I will learn to deal with this, as I am learning to deal with so much change in my life. I do know that when this trial is behind me, I will come out the other end a much better human being.

This message has been on my mind a little bit tonight as I have thought about my life, and the issues that surround it. I do really agree with this quote. I think though if I am being open and honest with myself one of the biggest things that hold me back is my fear that nobody around me truly loves me the way that I love them. I come from a broken home, in every letter of the word. My Mom and Dad divorced when I was young. I wont go into too much detail but I didnt really get the love that I think a child should have, it was always about what they needed, and where they needed it. I babysat, and helped to raise my younger siblings, and didnt ever really feel like my Mom was there. With my Dad, it was never enough. The two times per year that I saw him, and he made sure everyone around me knew I wasn't planned, and he didn't want kids. My life is much better now, and my relationship with my parents is better. I use those experiences as fuel, and I know without any question I will be a better parent. Really that is the goal in this life I think. To give your offspring a better life than you had. While there are things that I wished were different with my family situation, I know that especially my mom worked really hard to make my life better than her youth, and for that I will always be grateful, and those are the memories I choose to remember! 

I mention these things because it's so important to be real about your past, and your insecurities that hold you back. You need to know them better than you know anything. Knowing mine makes me grateful for the things I DO have, and the people that ARE in my life. We can't fix our life's issues in one swipe. They can be only changed one issue, and ine step at a time. 

If you don't already; please be open at least to yourself about your insecurities. 

The BEE Update

I get a lot of questions as to what my current health status is...and because I'm trying my hardest to live a normal life in spite of it being hard, I don't like thinking about it. 

So because it means a lot that you care enough to ask, and me trying to be as open as possible for the goal of helping someone through this I will update on this blog! 

We're now almost 8 months into this journey. I could say with certainty that I am having a harder time now, then ever before. Headaches are a constant thing. Fluid leak is dripping down my throat all day, but it is worse at times. I walked into a resturaunt the other day and my hands were full of fluid. It's embarrassing, and then stuffing tissue up my nose is quite noticeable. But I think that it's an opportunity to teach, and show people about my "BEE Happy Movement" and hopefully leave them better off, so I justify the embarrassment for that opportunity. 

I hate pain pills. Always have, and now I am literally in them every day! I wake up in the morning feeling quite normal, then by afternoon it's taking all I have to keep going, by 7:00 I'm having to take a pill. They give me an opportunity to get ahead of the mental game. 

Most of my day is mental. Can I keep going? I force myself to push on...while that is very heavy, it is the only way I am not in bed all day. 

Surgery will hopefully be this year. Brain surgery is what I am leaning towards. The thought terrifies me though. I pray that by the time that comes, I will be prepared emotionally. 

The biggest lesson I have learned in the last 8 months is that I am the most happy when I am helping someone else, helping them feel happy inside. There is so much power in having your heart and soul happy and strong. If more people helped each other, and truly cared about the people they see struggling, this would would change for the better nearly immediately. The Bee Happy Award starts in January, where we will award people in our community for being above reproach, and for being happy inspire of trials! I get to see many of these awesome people, it's time we show the world there is ALOT to BEE Happy about...I hope I can make a difference to at least one person.  

*I wrote this on my phone. Please forgive spelling errors, and punctuation. 

Be Thankful, and KNOW the changes you need to make...

As Thanksgiving has come and gone, it has given me a moment to reflect on the things I have in my life to be grateful for, and I have also been in thought about the things I want to be different in my life. 

I believe it's extremely healthy to know both the good, and the not as perfect things that surround your life. In order to achieve a space in your life where you are happy, you must be progressing. 

I have made a lot of changes in 2015. Some have been forced upon me. Some have come from being sick, and knowing what it's like to dream of a normal day, and others have been shaped because of relationships I am in, and people that I know. It's been the hardest year of my life, but I am better for it! 

I still have a long road. I am not where I want to be. There are many things as I sit here writing this that I want different. More than I can even say here...but I know them, and will do all I can to make the changes I need to make! 

We can change our own lives, our own future; I know it is true. It starts with BEEing Happy, and BEEing Positive. Tomorrow is the first day of the rest of your life!