Sunday, September 25, 2011

This One is Long Overdue


When I first started writing this blog a few years ago it was mostly meant to be a status update for my family and friends that wanted to keep comprised of the ever-changing condition of my health. Over time it began to serve as one of a few personal journals where I could find refuge from the daily fight and banality of chronic sickness coupled with emotional and physical pain. As I continued writing I quickly learned of the catharsis that putting your feelings on paper (so to speak) often brings. Being able to voice, or at least attempt to voice, what I feel inside has become a big part of my recovery.

As I became swept away in the process of dealing with my condition in the physical realm while also trying to put into words what was going on inside of my head, I inadvertently became even more selfish that I was before I became sick (and I consider myself having been a fairly self-consumed individual). Narcissism, in all its forms, unfortunately always leaves the people around you overlooked and unappreciated. Regrettably, such has been the case with my wife Stephanie over the last six-plus years.

The saddest part about this is that it's something that I barely even recognized. I have been so absorbed in dealing with my health issues that I wasn't even aware that I was neglecting her, to whatever degree that may have been. That's a tricky thing about being sick that people fail to mention- often times it's nearly impossible to wrap your head around anything other than your sickness/soreness when you are in its grasps. I think that this has been the case with my discounting Steph.

So here I am over six years later at the very least acknowledging this fact and making an effort to amend my ways.

For those of you that haven't yet had the genuine pleasure of knowing Steph, allow me to make mention of just a few of her endless qualities. For those that already know her, none of this will surprise you.

First off, any spouse that sticks with their significant other through sickness or suffering is a unique individual. The stresses that come with chronic suffering are beyond measure. Of course there are the things that most people would recognize such as having to serve as a pseudo-shrink/counselor/nursemaid and never before experienced financial burdens, but there are so many other responsibilities that it would be impossible and boorish for me to list. The often-used adage "life turned upside down" certainly applies in these instances. Not only was the way that we were living before forever changed, but so to was our priorities, goals and dreams. Think about that for a moment- if everything that you had hoped for and planned for instantly became irrelevant, how easily would that be accepted? Not only did Steph pay no mind to a drastic change in our life-script, but she has done so with a smile on her face and a radiance in her presence. Anyone that knows her knows this.

People that are just meeting her often pull me aside and ask if it is fake, like a front that she puts on for people to hide her true feelings. I can assure you, that is the farthest thing from the truth. As with most people there are bad days, but Steph deals with all of them with such an astonishing degree of dignity and contentment, never losing her cheerful countenance and appreciation for life. She is the person that picks me up when I am down and reminds me of how blessed we are to still have moments together. Without Steph and her incalculable strength (of which she never gives herself enough credit for) I have no doubt that I would not have survived as long as I have. Regardless of how dire the situation, her loyalty and support never waver. I cannot think of any other person that would have stuck with me through all that she has. For all of the reasons that I have listed above, and countless others that I hold dear, I will always be in her debt.

So let this serve as a small "thank you" to my beautiful and amazing wife Stephanie Lynn Reynolds. She is one of the principal reasons that I love my life despite its numerous challenges. I love you Steph :)

Sunday, September 11, 2011

Just Another Post-Surgery Success is All ;)


(Just goes to show that there are Cougar fans everywhere. This is one of my favorite pictures. Really wish that they would have pulled out the win yesterday:( )

Hey there my few and totally appreciated devoted followers :)Just thought that I'd fill you all in on my recent status.

A week ago last Thursday, after spending the previous week getting bruised and somewhat beaten at the hospital infusion room on a daily basis because I literally have no more vein access for IV's following six-plus years of them being tortured and abused, I had surgery to implant my fifth and hopefully final port. Those that have been following my case since the beginning know that this is both good and bad news. The good news is of course obvious, no more needle sticks and much quicker access in case of tests and/or surgeries. The bad news is a bit more complicated.

As a refresher for those that have forgotten or are newer to my case, I currently have a 4-6 inch Dacron graft holding my aorta together that was implanted when my aorta was accidentally severed in 2005. At this point in my recovery process, the graft is entirely endothelialized (forgive spelling) which basically means that it is all scarred-in. This is also both good and bad- the good being it slightly lessens the risk of it getting infected, and the bad being that if it were to get infected it would be nearly impossible to replace. So as you can see, there are a wide range of emotions currently filling the Reynolds household.

I am sad to say that both of our not-so-little-anymore Jack Russell Terriers Junior and Jessie (whom my mom was so wonderful to take care of this last week) have contracted a salmonella-like bacteria that has given them an enormous amount of grief. After multiple Doctor's visits to THE BEST veterinary clinic in the state (Central Valley Animal Hospital off of 33rd and State for those interested- they are genuinely incredibly skilled and compassionate people)they are both battling through with dignity and starting to do better. Even more sad for me, the dogs and I have to remain apart for the time being because of our existing health-related issues. I can't speak for either of them, but I know that not seeing them as much will lengthen my recovery. I just hope that they get feeling better soon.

So back to the surgery. It was a huge success and I was back at home laying in my own bed within hours of the procedure. The following day Steph and I drove up to Park City to spend the week recovering and to celebrate her birthday. We used a gift from my awesome mom which was a one-week long stay at the Mountainside Marriott Vacation Club (thanks again mom :)). Words cannot express what a needed get-away this was for both of us. Thanks to my fabulous Doctors, Nurses, and IMC Infusion staff (particularly my pharmacist friend Dave and Nurse Leslie) I was able to spend the first five days outside and moving around for a good portion of each day. The hotel staff was incredibly good to us, as were the many people that we met in and around the hotel. On Thursday night I was up vomiting the entire night, which led to me spending all of Friday and Saturday in bed sick and sore, but overall it was a wonderful week. Besides the relaxing nature of the trip and the perfect weather, my favorite time was of course spent with Steph. We had a relatively small birthday celebration by most of our friend's standards, but it wasn't one bit less loved and appreciated. If I could give the world to my beautiful and loyal wife I would, but I am certain that she would give away most of it to needier people (except for anything with Sephora on it). More than anything, Steph and I are grateful for the time that we get to spend together because realistically, we weren't even supposed to celebrate her birthday together at any point during the past 6 years.

The thing that people unfortunately fail to remember in our fast-paced, overindulged, get-ahead, often-bored, keeping-up-with-the-Joneses culture is that we are all living in a world where an instant can change your focus and most assuredly your life. Most everyone effortlessly bears in mind that truth today, being the anniversary of the 9/11 attacks, but the reality is that it is too easily forgotten or simply overlooked as we move through our everyday lives.

I don't consider myself any luckier than the next person when it comes to life-expectancy. I've always joked that in addition to outliving everyone that I care about, I will most surely die by way of bus, or lightning, or something else completely unrelated to my health troubles. As I see it, we are all existing on someone elses time-clock and we have no decision in when or how that time will come to an end.

For this reason, I try hard to live every moment as if there will be no more. I try to forgive myself, those that have hurt me, and those too that I may have hurt. I try to spend as much quality time with the ones that I love and that love me and tomake memories matter most. And I try to never forget to be grateful for all of the wonderful blessings that I have at this moment in my life, no matter how difficult things may currently seem. Nothing meant to be prophetic here- just trying to pass along a little thought :)

Thank you all for the many thoughts and prayers, and the undying loyalty and support .

Love you all and God Bless.
J

Tuesday, August 16, 2011

My Reality


Over the last six years, I've heard things from people that cover the entire spectrum of compliments and criticisms. Whether it be friend or foe or someone that I've only met for the first time, it seems that nearly everyone has a thought run through their heads when they see me hooked-up to all of my medical devices. More often than not their thoughts end up coming out of their mouths for all to hear. Almost every time I travel and am being wheeled through security in a wheelchair so that I can be looked over and patted down head to toe, which by the way takes at least twice as long as it does someone going through the "abled-body" line, someone will inevitably shout out a comment regarding how unfair it is that my family and I get to move to the front of the line. It's amazing that someone would see me and all of my medical apparatuses and say anything negative, but it happens. Fortunately it mostly always makes for an entertaining story to tell, so I don't mind it very much.

Of all of the things that I've had people communicate to me, the most common thing has something to do with me having a good/positive attitude considering my circumstances. Where this is something that I always appreciate hearing, it's not entirely true. The fact is, I do have quite a few "bad" days. More than quite a few to be completely candid. My worse days typically start out with me feeling sicker than normal, with me praying that I can throw-up to get some relief. This won't happen quickly, which makes my sickness even worse. By the time that I do vomit I'm so ill that it doesn't bring relief at all, but instead makes my many hernias pop out, which then causes me brutal pain. Once I've made a few trips to the toilet I will begin feeling the effects of severe dehydration: My joints and muscles will stiffen-up and become stuck in awkward positions, I will begin feeling dizzy and unstable when upright, and I get migraines so awful that any light or noise only makes it worse. Predictably, when the physical effects of my sickness have taken hold in this manner, the depression will begin to set in.

I'm not talking about the "I don't want to get out of bed today" depression either- it's more like a "I'm not sure if I can stand-up let alone make it to the bathroom to throw-up without feeling dizzy and passing out." There are honestly days when I feel so depressed, so alone and so helpless that every cell in my body feels as though it is being attacked. I lose all desire to speak with anyone or do anything that normally serves to distract me from my ailments, such as watching television. When I feel this way, I frankly don't want to even be conscious, but unfortunately I am normally too miserable to sleep (I'm currently going through this as I write this).

Thankfully this only happens every now and then, generally about once a month, and it normally lasts for a few days. As miserable as this is for me, it is far worse for my sweet wife. There is little she or anyone can do to make it better, and more often than not the tone of my voice reflects the way that I feel, which isn't enjoyable if you happen to be on the receiving end of it, as Steph generally is.
All that I am left to do is pray to God for strength and comfort, and have enough faith to wait it out.

What's interesting about this wretched routine is that when it's all over with I feel so grateful for even the smallest things. It always humbles me and makes me appreciate things that I may have otherwise ignored, like being alive in general.
What I have learned through all of this is that the trials we go through are necessary so that we may understand all that we are blessed with. In essence, the trials are a gift.

Admittedly it isn't always easy to see your trials as a blessing to learn from, particularly when you are in the middle of whatever it is that you are dealing with. The only way that I make it through mostly unscathed is because I have a great support system of friends and family, and I have learned, through lots of trial and error, to look at each situation from every perspective (hence the blog name- it's all about perspective. Take my word for it though, it truly is) and to put my faith and trust in God that things will work out according to his plan. It also helps that I know that this mortal life isn't the end but rather another step in my journey.

Thursday, August 11, 2011

Hoooray! My Blog is Back!


(Pictured: A massive black hole at the center of a nearby galaxy, Centaurus A, feeds on a smaller galaxy in a spectacular collision)

I was starting to lose hope, and then it happened- my blog was restored! Considering that I have barely made any posts over the last year or so, you'd think that losing it wouldn't have been such a big deal to me. Much like a pubescent lost love, I guess I needed to lose it to remind myself how much it means to me. It's strange how things like that work in life. So often we don't appreciate what we have until it's gone. I think that was an old Whitesnake song......

Since the moment that I thought it was gone forever, I vowed that if I were to get it back I would make regular posts and treat it the way that I had intended to treat it from the beginning- as a journal to comprise my feelings, my failures and my successes. So from this point on that's what I plan on doing.

A quick update on recent things of note. Almost two weeks ago we held a yardsale/fundraiser to help with my medical costs. So many people came forward to assist us. Since it was the first yardsale that Steph or I have ever done we don't have anything to compare it to, but I think it was a HUGE success. We had so much support and help it would be impossible to name everyone, but to all of those that did, we sincerely thank you. We were reassured that there are a lot of people out there that care for us, and that alone gives me strength to fight through the occasional rough patches that I have.

Speaking of rough patches, I am currently in one. I don't know if it's a post-yardsale crash or the summer heat, but I am sicker than usual. Most of my nights for the last two weeks have been spent running to and from the bathroom, which means that I spend the following day trying to catch up on sleep. My nausea and vomiting has been out of control. When I throw-up my hernias always pop out, which then causes me severe abdominal pain. Even worse than the pain though, the excessive vomiting causes me to become dehydrated a lot faster. Between puking, diarrhea and my continuous sweating problem, I feel like every day is a battle to keep hydrated. This is nothing new for me, except for the fact that I am quickly running out of veins for IV's. One time last week it took 11 sticks to find one, and that IV ended up in the knuckle of my thumb. Not a fun spot. I usually don't mind needles, but I don't want to get stuck more than a few times each visit. The Nurses that I see are truly the best in the business so it isn't their fault- it's because my veins have been beaten up from six years of being poked and they've finally had enough. I've known that this day would come, I was just hoping that it would have come later.

So this hydration/vein issue causes me a major dilemma: Do I continue getting stuck as many times as it takes to find a vein, with the IV only lasting a day or two, until they literally can't stick me any more (some Nurses would argue that I'm already at that point)or do I risk another port surgically implanted in my chest, directly in front of the graft in my aorta? A port would certainly solve my vein problem, but it brings about issues of its own. The main issue (for those that are newer to my blog) is the aforementioned graft that holds my aorta together. If/when I get another infection the fear is that it will reach the graft, which is heavily scarred-in and would be nearly impossible to remove/replace. To be blunt, the surgeons told us (the four previous times that I had a port) that my chance of surviving would be around six-percent if the graft were to get infected. With odds that low they may not even attempt surgery to replace it, which would essentially mean a long, slow death from infection. That's obviously a scary thought. The alternative though isn't much better- possible multiple organ failure due to dehydration. Neither option is great, which is the reason for my dilemma.

As scary as this is to me, I have to keep reminding myself that I am fortunate to be alive today, and I have dodged more than a few bullets over the last six years. Whatever is in Gods plan for me is out of my control. All I can do is live the best possible life that I can and be appreciative for all that I have. No one knows when their time is up anyway, and I am no different. Deep down I know that I have a lot more to do in this life and I will probably out-live all of the people that I care about.

I don't mean to sound all dramatic here- these are just the things that I have to concern myself with at this point in my recovery. Fortunately my blog is back because it always helps to get my thoughts out of my head and onto paper (so to speak). Because I have such an amazing support system around me, I know that I can deal with whatever comes my way. And because I have faith in God and his eternal plan for all of us, I know that this mortal life is only a step on an everlasting journey. What a consoling thing it is to know beyond any doubt that I will be with my loved ones beyond this mortal existence. That alone gives me the comfort that I need to make it through anything. Its been said that the man with nothing to lose is the hardest to defeat, and because I know what I know and am basically living on bonus time, I have nothing to lose :)

Thanks for all of the love and support. I am certain that it is the reason that I am still alive today.
God bless you all.
Jason

Monday, July 18, 2011

The Dog Days of Summer...

After promising that I would be back posting on a regular basis, I ran into a few minor issues to deal with.

Almost right after I made my last post I started feeling sicker than usual. After a few days of suffering, Steph was finally able to drag me to the ER where I found out that I had a bad infection accompanied by air leaking into the wall of my bowel. Not being familiar with my case, the ER Doctor immediately recommended that I be admitted and transferred to the U for surgery. Needless to say this was not something that Steph or myself wanted to hear, so we refused admittance and decided to battle the infection from home, hoping to avoid surgery at all costs. Upon following up with my regular Doctors, it was determined that the air in the bowel issue would be something that I will always have to deal with- with the hope that I can manage it without it getting any worse. I guess the problem is a result of my numerous bowel surgeries, but it wasn't something that my GI Doctor seemed overly-concerned about. For the next few weeks I took a heavy dose of antibiotics and the infection eventually went away.

About the time that my infection left, I accidentally fell down the stairs and broke the big toe on my right foot. Nice huh. I have no excuse for my stupidity other than socks on slick carpet. While I carried my IV pole in one hand and a Gatorade (shouldn't I be getting endorsement dollars for as much as I use/rep the drink?)in the other, while trying to carry on a conversation with Steph, I tumbled from the top down. After meeting with the foot Doctor it was determined that during my fall I chipped a piece of bone off of the top of my toe. So now I am hoping to recover on my own without needing surgery (we'll know for sure in a couple of weeks). Obviously surgery is the last thing that I want to do- be it abdomen or toe.

So I'm doing my best to recover from my tumble, and somehow I get Strep-throat, probably from my 3-times a week hospital visits to get my IV's. For a mostly healthy person, Strep wouldn't be a big deal. But for a person like myself, it serves to complicate all of the issues that I regularly deal with- most notably my nutrition and hydration levels. So far though I'm managing pretty well :)

Aside from the few ailments I've been dealing with, the summer has been depressing. Steph and I had planned to take Jeremy to New York to visit family and see some Red Sox/Yankees games in early June, but with the issues that I was dealing with, the Doctor wouldn't give me the "ok" to travel. In fact, I don't have the "ok" to travel at all during the hot summer months ever again, and I've been told to stay inside and out of the heat as much as possible. What a bummer. Things are so complicated with my health that I worry that I'll never be able to travel to a warm climate again- which I would be ok with- but my Hawaii-loving wife may not. Ideally I need a Nurse that can travel with me in case my IV blows and I need another.

Onto more important and exciting news, Steph and I have decided to have a yard sale/fundraiser to help pay for my medical expenses. We are having it on Saturday, July 30th from 7-5. Our address is 2905 East Wardway Drive (4030 South)in Holladay, Utah, 84124. In addition, we are accepting any donations that anyone would like to make. If you have some stuff that's been sitting around for awhile and you want to get rid of those items, you are more than welcome to donate it to us :) or come by and shop while enjoying some food from our bake sale. That sounds totally cheesy, I know, but we have exhausted all other options and have some things that we need to part with in order to keep me alive and as healthy as possible. That's not cheesy, that's simply the reality of the life that we live.

Other than not being able to afford certain necessities, my life is nearly perfect. That's also a reality. I am so blessed to wake-up and have another day. I am so thankful for my incredibly loving and supportive family and friends. I have a beautiful and healthy wife and 2 kids, and for the most part, everyone else in my extended family is mostly healthy as well. The days may often be long and hard, but I am still looking forward to waking-up tomorrow and starting all over again. That's a good thing, right?

I am convinced that I am truly happy because I remember the many things that I have to be grateful for. I know from my experience over the last six-plus years that any life can be loved if the person feels true gratitude for what they have. It doesn't even need to be "big" things like family and friends that you are appreciative of- every single day I feel fortunate that my bowels still work well enough for me to go without a colostomy bag (not that that would be the worst thing). If my bowels eventually give out completely, I will feel lucky that I am able to get the nutrition that I need to survive because of our incredible medical technology that allows me to feed every day through a surgically-implanted tube in my bowel. I believe that as long as you are alive there is something to be grateful for.

Just a though to take with you this week ;) And thanks again for all of the love and support you all have shown me during these last few years. I literally wouldn't be alive without it.

Wednesday, May 4, 2011

My New Venture

Hello again everyone. I hope that you are all as impressed as I am that I'm posting so soon. I think that 7 months is enough time between posts- something that I hope to never do again.

In my previous post I mentioned that I've been struggling with some things lately. One of the things that I am struggling with the most these days isn't necessarily physical. It's more about trying to figure out how to best fit into the world, given my circumstances. It often seems like the world wasn't meant for someone like me and I feel that I don't really belong anywhere. It's so hard to explain or put into words, but I'm going to give it a shot.

Because of my health issues I am not able to work a "normal" job. During all of the struggles that I've faced over the last 6 years, this has been one that resides at the top of the list. It's not so much about the money (although when you've got medical expenses like I do, it certainly helps) but more about all of the other benefits that come from working, specifically the emotional/internal ones. I struggle each and every day trying to figure out how I can possibly impact the world in a positive way, considering my sometimes crippling health issues. Before all of this health stuff happened I never would have imagined a time that I would say that I missed working. Instead, on more than one occasion I dragged myself to work complaining about having to be there. I didn't always appreciate the blessing and privilege that comes with being able to work. It is truly a gift- it's just too bad that it took me not being able to work to realize that. That's how it goes sometimes though.

So I'm going to attempt the kill two birds with one stone, so to speak. I want to speak with people and share an interesting story of despair, hope, resilience, faith, gratitude and triumph. I want to share some of what I've learned by experiencing the things that I have during my life- particularly the last few years. I want to inspire people. I want to remind people. I want to impact people in a positive way. I'm definitely no Tony Robbins and far from a polished speaker, but I have a story to tell that I think may be helpful to a few people out there.

So.....I am available to speak to anyone and everyone, be it church groups, businesses, youth groups, schools, guy's poker night's, women's book clubs, you name it. I will not be charging a fee, but instead I'll be doing it on a donation basis. Where I do have many medical bills to pay, I figure that the universe will work things out and take care of me one way or another :)

I have some experience, albeit limited, speaking at business retreats/seminars, church meetings, and youth groups. Not so much women's book clubs or guy's poker nights, but I'll try almost anything :)

If anyone is interested please feel free to contact me at jdr.go.sox@gmail.com and we can chat about it. I hope that I'm not sounding too cheesy by doing this- I just can't think of a better way to get the word out.

Thanks for reading and I'll be back soon!
Much love to you and yours.
God Bless,
Jason

Sunday, May 1, 2011

Six Years Later.....


I decided to make a post today in honor of my "6-year anniversary" which was April 25th, and was shocked at how long it has been since I last made my last post. It's always amazing to me how the days can sometimes feel so long, yet time seems to fly by. Six years.....as I contemplate that number I have the hardest time grasping how much has happened during that time. Because so much has happened during the last few months, I will have to spread it out in multiple posts- which means that I will have to be better about getting online.

To be honest, I (along with all of my Doctors) didn't think that I would be alive this long. It makes me feel as though I'm living on borrowed time. It's really a crazy feeling, especially when considering the things that I'm struggling the most with these days.

My health is up-and-down. It's a constant battle to stay nourished and hydrated- literally a full-time job. For the last month I have been fortunate to be able to hydrate at home. I go in every 3 days to have the infusion nurses start my IV's, and all of my supplies are delivered to my house. The time spent at the hospital is only about one-third of what it used to be, which is great.

I've also been doing physical therapy 3 days a week for the last two months. It too has made a big difference in my overall health. My therapist spends most of the time during my sessions breaking up the scar tissue in my abdomen. In the long-run, as I strengthen my core muscles, it will keep my many hernias from poking out. Until then though, they will pop out more frequently than ever before while the scars reform and my abdomen heals.

Also news of great note- my oldest son Josh has been diligently serving the people of Dallas, Texas since December 1, 2010 on his Mormon mission. I am so proud of the sacrifice that he has made in choosing to spend two years of his life spreading the word of God and bringing people unto Jesus Christ. Not having served a mission myself, I can't speak of the things that he is going through, but I cannot think of a more unselfish thing for a 19 year-old boy to do. He has been doing a fantastic job and has met a lot of great people, despite recently dealing with some health issues of his own. Overall he is doing great, and I am certain that he will be blessed and that his medical problems will be figured out. BIG props to Josh!

Besides my health, my main priority during the past couple of months has been following my other son Jeremy and the American Fork baseball team. While sitting outside in the dry heat isn't the best thing for a person dealing with hydration issues, the enjoyment that I get out of watching him play is more than worth whatever I may have to deal with physically. There have been many nights spent in the infusion room getting an IV immediately following one of his games, but I consider it a small price to pay.

What a blessing it is that I am alive to see my oldest son go on a mission, and my youngest son play the game that I love. I'd endure anything to be able to experience life the way that I have during these past six years. I am a blessed soul.

I am also blessed to have so many loving and supportive friends and family out there, and all of you have played a distinct role in my recovery and the fact that I am still here today. Whether it's a ride to infusion, a visit when I'm feeling down, a comment on my blog, or a thought and prayer it has meant more to me than words could ever express. I genuinely thank you all for that.

I promise to be back soon and tell the rest of my tale.
Love to all, and God bless :)

Friday, September 3, 2010

Part II: Gratitude

I recently had what will hopefully be the last surgery on my mouth for awhile, and although I'm struggling to recover as quickly as I'd hoped, in many ways I'm feeling better and the outlook is positive. To give a quick explanation, the Oral Surgeon (the incomparable Dr. Jeremy Manwaring) took skin grafts from the roof of my mouth on both sides and used them to build up my lower gum tissue. Because I throw-up regularly, the roof of my mouth has been taking a long time to heal. Even with a mouth guard that covers the inflamed area, it is sore to the point that anything that touches it causes pain. As everyone is already aware by now, this means that eating or drinking by mouth is difficult, if not impossible, so the snowball begins and I quickly become dehydrated and malnourished. I run my feeding tube at the highest rate that I can stand, but because of my absorption and gastroparesis issues, I can't sustain myself with it alone, and it causes intense abdominal pain when I run it in too fast. So I end up doing what I've been doing all summer, laying in bad, slightly upright to help the nausea, but flat from the waist up so I don't hurt. Sometimes taking a deep breath momentarily takes my breath away. Wow, this sounds a bit like complaining to me...I hope that's not the way it's coming across.

Besides the pain and nausea, I guess the biggest thing that I'm feeling right now is discouragement. Not in the sense that I wish for anything different, but more that my body won't allow my mind to do what it wants. Where I genuinely feel blessed for every waking breath that I've had during the last five-plus years, I've mostly just been surviving. Now I'm at a point where I want to live. I want my body to allow me to want to get up and moving, and when I do, to hang in there long enough that I'm able to experience the wonderful moments in life that only come from being around people.....being in the world.....having a bigger role in this process. It's so hard to explain, I shouldn't even try. I don't expect anyone to completely understand what I'm trying to say, just as I will never know what it is like to be any of you. We all suffer in one way or another, and I by no means think that my suffering is any greater than anyone else's. After all, suffering is the human condition. We have to suffer to truly comprehend how amazing life can be. More than anything, I have learned this through my health trials during the last few years. It's taken a long and often difficult process, but it's all been worth it to me just for the things I've learned, if nothing else. I honestly wouldn't change a thing about any of it if it meant that I'd not be where I am at this very moment. I mean that.

Having a bit of alone time during the last few months has allowed me to reflect and work through things from my past- not just mistakes and transgressions, but mostly positive things. I've recalled things that I had completely forgotten about, little seemingly insignificant moments that made an impression on me, even if the other people involved were being impressed at the time by something else. It's an easy thing to do in our fast-paced world, and I know that it's happened to me too many times to count. Whatever the case, I have been blessed to have experienced many of those moments, again, too many times to count. I am more grateful for this than anything else I've ever experienced. I don't feel that I've done anything to deserve the many wonderful people that I have connected with. The connection with each individual person is unique and special beyond description. I don't like to refer to relationships as "deeper" than another, and it's not a matter of "good" or "bad" or "better" or "worse." There's the usual suspects, like my amazing family. There's the many incredible friends that I've made over the years, most of whom always had my best interest in mind. And of course there's the people that I've known for a long time. As far as I'm concerned, these people are family, and I love them as such. It's what life is all about, and I am blessed that I was born into the family that I was. This is truly a blessing, because there are a lot of people in the world that weren't as fortunate as I was. When you consider this, there's not a big difference between myself and any homeless or drug-addicted person in the world. In many ways, the difference is that simple. I was born on 3rd base and acted like I'd hit a triple. There's a lot of people that are handed a bat already down 0-2 in the count, with the bases loaded and 2 outs in the bottom of the 9th, behind 4-3. Despite this, a select few will rise above it all and knock the next pitch into the gap to score the winning runs in walk-off fashion. Others may draw a bases-loaded walk to tie the game. Sadly though, most people with two strikes against them from their moment of conception will strike out. My point is, I understand how fortunate I am to have the family and friends that I do.

But there has also been a small group of people (relative to how many people come in and out of our lives) that has been equally as important to me. They are the people that you come in contact with that stay with you for as long as you live. It may have only seemed like a moment at the time, but that time together can be every bit as powerful as your longest relationship. I have also been blessed with many of these people, some who I still have contact with, some who I don't. I am grateful for all of those that have had a positive impact on my life and who have helped me to grow as a human being. I'm certain that there are some that don't pay me any attention now, and they may not even know that they mean anything to me. I sincerely hope that is not the case. It definitely makes me want to reach out to a few of them.

In addition to all of this, I have even more to be grateful for. I can see a bright light at the end of the tunnel. The light has me excited for the future- which is a strange and new feeling for me, but one that I welcome with open arms. The fact is, I haven't looked ahead beyond the moment very much since this health journey began, so this process is proving more difficult than I would have expected. Although I always loved looking ahead, dreaming of what could be, and making plans, there's a simplicity that you find when your only focus is on the moment.

Regardless, this is a problem that I won't ever complain about having, and I honestly feel blessed because of it. My biggest challenge is keeping myself from getting carried away with making future plans (my "life-list" is getting long) so I am trying to find a happy-medium.

Through all of the health issues that I've been faced with during these last few years, there have been many things and countless people that have helped me survive, too many to name here. In fact, I'm probably going to have to write a book to explain them all. Until that happens, I wanted to share the one general theme that has resonated with me from the beginning- that thing being gratitude. The key to feeling happy and fulfilled is gratitude. Being grateful for all that you have been blessed with. Every little thing. In our culture of excess and competition, this is often easier said than done. I won't lie and say that I don't wish/hope for things- it's human nature to do so and I am very much a mortal being. In our world it's so easy to fall into the trap of desiring more, better, bigger, etc. Unfortunately when we are in this frame of mind, not satisfied with things as they are, it's difficult to recognize the things that we already have. We are led to believe that we will feel fulfilled when such-and-such happens- when we get married, buy the new toy, lose weight, or progress in our career- the list goes on and on. Focusing on all of these things that we think will lead to our happiness only makes us forget the many things that we are already blessed with. And consider this- if even the smallest thing would have happened differently, you may not be where you are now. Just my thoughts :)

I will continue to keep you all in my thoughts and prayers. Thank you for making a difference in my life :) I love you all and God bless you and your loved ones.
Talk soon.
J

Monday, August 23, 2010

Another Season Winds Down

Wow, I can't believe how quickly time goes by, especially when each minute of each day sometimes seem to last forever. It's been a long time since my last post and there's a lot to tell- so I'll get to some of it and try not to make it too long. Because I won't be able to tell everything in this post, consider this the first of a 3 or 4 part series :)

As summer comes to a close and my favorite time of year is just around the corner, I am finally beginning to see some positive change in my physical health. I realize that I may be the only person reading this that feels this way, but this summer has felt extremely long. These past few months have been some of the toughest that I've dealt with in the last few years. Obviously the heat kills me- literally- but I've also been dealing with some dental issues as a result of throwing-up every day. I've needed a bunch of root canals and I recently had gum-graft reconstructive surgery (the bile and acid had disintegrated my gums on both sides of my bottom row of teeth, exposing the roots). More than anything though, my mouth- check that- my entire head- has been hurting to the point that I'm forced to either wear a hospital mask (which I hate doing, because along with my feeding-tube and other medical paraphernalia, people think that I am contagious) or keep my mouth covered with a washcloth. I've even slept with my mouth covered because it hurt to breathe. I don't care that I look ridiculous in public, I just hate feeling miserable.

Long story short, since I've been having mouth pain, I don't want to eat or drink anything, which quickly snowballs into a long list of other problems. If I don't drink, I get dehydrated. If I don't eat, I become malnourished. I've been really good about staying hooked-up to my feeding pump around-the-clock (I run Gatorade during the day and stuff similar to Ensure at night) but because I have problems with digestion and absorption, doing this doesn't keep me stable by itself- I have to be able to do it by mouth as well. So my GI Doctor set me up for daily IV infusions again, which is something that I didn't want to do. To me, having to go back to IV infusions felt like I was taking too many steps backwards, after having pushed forward so much since my last surgery. Knowing this, my Doctor decided to send me to a different hospital. He thought that a change of scenery might make it easier, and boy I am glad that he did. I've been going to the new Intermountain hospital in Murray, and it has felt like a new beginning. I've been trying to go in every other day instead of every day, which has only been working because I spend the rest of my time indoors and in bed. So needless to say, it hasn't been the funnest summer for me. However, things are getting worked out, and in a lot of ways I'm in the best shape that I've been in since the accident happened over 5 years ago.

Reading all of this may make you think that I've got it really bad, and some may even feel sorry for me. But don't think either thing. Even though it's been tough missing out on family vacations, barbecues, pool-parties, baseball/sports, and/or anything else that entails eating or being outside, I have used this time to work on personal growth. Most days its been hard to concentrate long enough to write a sentence, let alone an entire post, but I've had plenty of time to think. And to ponder. And to pray. Let's just say that despite my physical trials, I'm in a great place spiritually. I'm not talking religion here, because as my fellow church members can tell you, I don't have the greatest attendance record. Rather, I'm speaking about feeling at one with the universe and connected to a higher-power. For me, that connection/relationship is with God, and with his Son Jesus Christ. Even after more than 5 years of dealing with this stuff, I still need the humbling that comes with feeling crappy. That may sound strange to some people, but I truly believe that we sometimes do our best work at our lowest points. Knowing how easy it is to get caught up in the things of the world, be it work, school, or play, I am grateful for the constant reminder about what truly matters. This is not to say that I wouldn't love to be at work, at school, or at play, but often times when you do those things it's easy to forget about the thing that makes it all possible- our Father in Heaven. Without Him, nothing else matters, and nothing else is possible. I am so grateful for God and for the Savior. It is because of Them that I am alive today, and only through Them can I experience true happiness. People may think that it's too bad it took losing my physical health to truly understand this, but I'm genuinely grateful that I found out in this mortal life.

I'll get back soon. Until then, thanks again for all of the thoughts and prayers :)
Love to you all.
Jason

Monday, June 14, 2010

Random Stuff



Another Great/Rough Weekend

Good Monday! :)
I'm making a post a lot sooner than I've been doing lately, but I had a really interesting thing happen that I wanted to share. First off, I want to be sure that people don't get the wrong impression from this post. Now that I've done my usual of qualifying everything before I say it- I have to do this a lot when explaining my passion for mixed martial arts- I'll get on with it.

Anyway, I had a mostly awesome weekend. I spent Friday hanging out with Steph and the dogs, and Josh and Jer and their friend Ralph (not to be confused with the Reynolds Ralph, which is the nickname that my dad has had for my mom for as long as I can remember) came over on Saturday night to watch UFC 115. It was great spending time with them, even though I was feeling pretty sick.

Long story short, I ended up spending Sunday in the ER getting IV fluids again. Since that's usually a whole other story unto itself, I'll spare everyone the gory details of my visit. After I finished my last liter of fluid, the Doctor came in and chatted with us. When I first got there I was so dehydrated that, despite a half-full waiting room, they got me right in and hooked up. As usual, the Doctors, Nurses and staff at University Hospital were awesome. Because of some issues I've had recently, the Doctor wanted to rule out another bowel obstruction. Because I've had a few of those in the past that required surgery to fix, he ordered a chest x-ray. He came in after I was hydrated and feeling much better to discuss the results. First, he said that there wasn't an obstruction, which brought Steph and I huge relief, seeing as another surgery is THE LAST thing I want right now. He then explained his reasons for doing the chest x-ray instead of a CT scan. Apparently, since 2005 I've had 45 abdominal CT scans. I know this figure is accurate because the Doctor went back 5 years and counted them one-by-one. The Doctor then explained that while all of those tests were most likely needed because of my health history, he didn't want to make it number 46. He said that I am at a very high risk for cancer because of all of the radiation. This shouldn't have come as a huge surprise to Steph and I, but it did. I honestly haven't given the potential side effects of any tests the Doctors have done any thought what-so-ever. There was no "long-term" worries because my case has always been so day-to-day. This whole cancer thing really doesn't affect me except that it is interesting. Interesting that we hadn't even considered "long-term" possibilities. For me, the fact that the Doctor was saying that this possible future event was something we should consider was music to my ears. None of us know what tomorrow holds, let alone years from now. Anything could happen. None of us are promised tomorrow under any circumstance, and regardless of our current health. This isn't to say that we shouldn't do everything we can to take care of ourselves, because I know as well as anyone the effect that eating right and taking care of our bodies can have on our quality of life.

So I log onto the internet this morning and up pops the Yahoo news. The third item in the news feed is titled "Americans get most radiation from medical scans." I'm pretty shocked at this point, and I immediately read the article and learn some really interesting facts:


- The average abdominal CT scan involves 10 to 20 millisieverts, so 45 CT's would be 450 millisieverts (at a minimum), and 900 (at the most).
- After studying the 1986 Chernobyl nuclear power plant accident and Japanese atomic bomb survivors, it was estimated that each survivor was considered at a very high risk for cancer after being exposed to 50 to 150 millisieverts.

Crazy right?! A-bomb and nuclear power plant survivors are at a high risk for cancer at 150 millisieverts of radiation, and in the last 5 years I've been exposed to between 450-900 millisieverts. I am thinking that this can't be just a coincidence. And since I know that I'm not going to ever get cancer, I felt I should probably warn all of you healthy-bodied readers. Absolutely ZERO worries for me, but I genuinely care about all of you :) If nothing else, it's some incredibly interesting information that most people probably don't know.

In case you didn't get it, the message here is that life is good! Take care of yourself the best that you can, appreciate all that you have, create memories with your family and friends, and never hesitate to let the people you love know it.
As for me, I get 2 more root canals this week on my journey to healing and recovery.
Much love to you all and God bless!