Prologue for My Book

Here is the prologue for my book, talking about what the book will be about.  For those that don't know, a prologue is an introduction to a written work.  Usually it sums up what is going to talked about in the book, at least the bigger parts.  Let me hear any and all criticism, I like constructive criticism, it allows us to grow. Let me know what you think and if there is something that is incorrect then let me know.  Enjoy!

Prologue

One of the Lucky Ones

Hello everyone, my name is Steven Denney and I would like to share my story of what I have gone through in my life, at least medically, with you.  If anything sounds too fantastical to you then write to me, I will have a website set up so I can answer questions from everyone. So bear with me, I have never written anything before besides a blog and am not a trained writer in any sense but I am going to try my hardest to make this book easy to understand.  I am going to try to make this book as conversational as possible; there may be times when I delve into the more scientific stuff surrounding the health conditions that I have had all my life, but I will do my best to make it “plain speak”. I will also try to go into what my psychology is during these events and how it has affected me.  One thing that you may want to do is ask your doctor or someone who has a good grasp on medical knowledge about anything I have dealt with all my life. Also, I would like you to remember that I am not a trained writer or journalism major in college but a history major with a focus on Arabic language and culture but am writing this book because I want to get my story out there.  Everything I am writing is from my memory and experiences; some of this has been filled in by my mother and father because there were times when I just do not remember anything. If you have had a serious health condition, then you will understand what I am speaking of. When you are in extreme amounts of pain, doctors will usually put so many pain meds into you that you just cannot remember what happened.  I sincerely hope that this book can help some people or at least gives inspiration to a few as well. So, I hope you enjoy this and maybe find some of this book interesting. Thank you very much. 

I am writing this book to recount my life and what it was like to grow up with and trying to be an adult with a few different medical conditions.  Being an adult is tough by itself but throw in some serious medical problems and then it gets interesting. The medical conditions I am speaking of are Addison’s Disease, ALD, AMN, and GBS along with a back problem called Scheuermann’s; which most people have never heard of, even medical professionals.  I will explain what the conditions are when I get to them in the timeline of the story and just a little bit in the following paragraphs. Those conditions are difficult on their own but all together they make for an inconvenient mix. I want this book to flow more like a conversation, like I stated before but there may be times where I get lost in all the scientific stuff about my conditions.  I am not a doctor, nor do I try to be one, even though some will say different, I will do my best when explaining about my conditions to make it easy to understand for everyone. When I was diagnosed with the first condition at the age of 9, I did not have the luxury of the internet so all the research I had done was by reading big books on medical science. So if you have any problems or cannot understand something, I will set up a page on a popular social media website where you can ask me questions or you can go talk to a medical professional.    

         Let me start with Addison’s Disease, since it was the first major condition that I was diagnosed with, now I want you to remember that I am not a doctor and what I am writing is information that has been given to me by medical professionals and what research I have found myself.  Addison’s Disease is a condition in which the adrenal glands do not produce enough of certain hormones, chief among them being adrenaline, which is very important to everyday life, not just the fight or flight syndrome, which most people have heard of. I was diagnosed with Addison’s when I was 9 years old in July of 1989.  The way to treat Addison’s Disease or most any adrenal condition, is for you to take a hormone replacement; this will be taken for the rest of your life, which I take in the form of hydrocortisone. It is not a bad thing to have to take meds all the time but I do forget a dose here and there. You do not want to miss a lot of doses in a row; I was told that you can either go into adrenal crisis or renal failure and neither one of those is much fun as I have already gone through one.  As of writing this I have been on this medicine for almost 30 years. The effect that Addison’s has had on my life is small, all I really notice day to day is the medicine I must take and that I need to watch out for the sodium content in food, which is really pretty easy to do. It is easy to figure out when a type of food has too much sodium but when I was younger, I took another medicine called Florinef that would help regulate the sodium levels in my body. I will have more of an explanation on Addison’s when I do get there in the story.  I have most of the types of male phenotypes for adrenal insufficiency so that makes my case even more rare. 

         Next, I also have adrenoleukodystrophy, this is a disease linked to the X chromosome or X-ALD or X linked adrenoleukodystrophy.  If you go by the definition that is on Wikipedia, it is a buildup of fatty acids and causing damage to the myelin sheath around the nerves.  Myelin is like the rubber coating on electrical wires, it protects them from outside sources. Now I am not going to get into the real scientific definition of the disease as you can easily look it up with Google or whatever search engine you want to use.  ALD is were Very Long Chain Fatty Acid buildup comes from. It affects the white matter of the brain which is behind your ear. The main myelin that is affected is the sheathing around the central nervous system. That in turn can affect a lot of things. There are seven different phenotypes of this disease; childhood cerebral, adolescent, adrenomyloneuropathy or AMN, adult cerebral, Olivio-ponto-cerebellar, Addison’s Disease only and asymptomatic and I have all but one of the phenotypes, which is not that common.   

         The scary condition of the three is adrenomyloneuropathy or AMN, all of these conditions I have can be scary but this one presents effects that can really hinder you when symptoms appear.  This is another form of X-linked ALD. AMN can affect a wide range of abilities that are essential to daily life such as walking, vision, taking orders or speech. When symptoms manifest themselves, which they have not for me as of writing this, some of the effects would be; vision impairment or loss, loss of muscle movement, and fainting spells. So far I do not have or at least have not presented any symptoms of cerebral or spinal involvement yet with this disease and hopefully do not at all or at least for a very long time.  This one can just stay away. 

 One form of treatment for Addison’s, ALD and AMN is Lorenzo’s Oil.  I was on this oil back in 1991 and 1992 as an experiment. At that time the oil was only approved in Europe, which is still the case because the FDA has not approved use in the United States as of this writing.  I was among the first in America to be given the oil as a treatment for these conditions. The oil since has been used in many different clinical trials and I am now trying to get into a clinical trial for it but on every trial I have looked at it says, “patient needs to be able to walk for 30 feet unassisted”.  Well that screens me out since I am in a wheelchair. When I was diagnosed with ALD in 1989, I was given a corticosteroid to take daily to combat the disease. After taking this medicine, I gained a lot of weight, anyone that has taken a steroid for any amount of time can attest to this. In 1991 I went to the Kennedy Krieger Institute in Baltimore and started taking Lorenzo’s Oil while also taking the steroids.  This was combined with a diet that was mostly devoid of saturated fats; Lorenzo’s Oil is an unsaturated fatty oil so this worked well together. The oil would need to be added to whatever foods you ate, which was very hard for a young boy to remember to do. My mother had this cookbook that I have now but she was not a fan of doing this but it was to help her son, so she continued. One of the hardest things about this was that as kid I wanted to eat what my friends were eating, cheeseburgers and hot dogs, but I could not afford to do that or it would mess up the diet with the oil.  After a few months of being in this diet I shrank in size, basically I lost all the weight I had gained from the steroids. This was a huge change for me when I was that young, around 11 and 12 years old. The change can be seen in family photographs at the time and my baseball pictures. 

The next condition is Scheuermann’s kyphosis or Scheunemann’s disease, this is a bad bending of the spine.  It occurs for me around the middle of the shoulder blades for me. This is what is considered a self-limiting skeletal disorder of childhood.  People with this condition cannot consciously correct their posture and will always have a curve somewhere in their back, mine is in about the middle towards the bottom of your shoulder blades.  This causes a lot of pain that sort of radiates out from that area. Imagine it is similar to something like scoliosis but is a whole lot worse than that. I only used scoliosis because that is something most people know about as most kids are checked for this in grade school when you are young, I remember getting checked for this when I was about 10 or so, guess they didn’t catch this though.  I also have a few different types of arthritis in most of my body, mostly dealing with me being in the chair and being active. Sometimes you can get in trouble with your body by doing a little too much. My pain is basically another condition that I have, at least that is how I have started treating it lately, because it has gotten so bad over the last couple of years. There have been days when the pain is too much to even get out of bed.  I am now right in the middle of the opioid epidemic because I am taking opioids to control my pain. Plus it is hard to get people or more specifically doctors to understand that I cannot become addicted nor do I have any withdraw issues because of not having any adrenaline. But I think my newest pain doctor understands that point. This condition has been troubling, mostly in later years because of the pain but also some in the younger years since I was never able to correct my posture. 

Last is Gullian-Barre Syndrome or GBS as it is commonly referred to.  This is a peripheral nerve condition that attacks the myelin, which is a sheathing of fatty substance that surrounds the axon, or nerve.  I had a severe case of GBS; I am still in a wheelchair after being diagnosed with this back in 2004. Now over 14 years later I am still in the chair but am completely independent.  I can drive, play sports, I work, live by myself and can do anything else I want to do. I am not limited by much but maybe getting something off the top shelf. My case was severe; the paralysis went all the way from my toes to my eyes, I had to be put on a ventilator because I was unable to breathe on my own, also I had a feeding tube put into me since I could not pass anything through my mouth or throat.  This lasted for almost 12 weeks, getting better every few days once the paralysis reached my eyes, which is the highest it will go. One of the hardest parts was that I wasn’t able to communicate with anyone, at least for the first 5 weeks or so, which was really tough when you need some pain meds or you would like the fan turned up or down and you cannot relay that to anyone. This newer condition brought with it more challenges of living with health issues.  One thing this condition brought with it is the emotional and social challenges I was not ready for. Being in a wheelchair is a lot harder than most think, the physical part is very easy, if your body has to do something it will adapt no matter what, it is just all the other things that are a serious challenge and it takes years to get better with them. I think I have done a pretty good job though but like everything else, I’ll expand on this more.   

There are many difficult times I have had to go through with these conditions, but I think the one that has given me the most difficulty would be GBS, mostly because of the fact that I am still in a wheelchair and there was a lot for me to master getting in a wheelchair and get ready for it in everyday life.  The stares I will get from time to time, the way some people try to talk down to me, the way I am just treated overall by some or just ignored by others. Most people I have met are way more accepting than some, although there have been a few rude ones out there, but that is to be expected. And possibly the worst part of all of this is the way I have been unfairly treated by women, just because I am in a wheelchair.  There are certain people that tell me, “oh that’s not it”, but apparently it is because before the chair I could attract any woman and now I am unable to. It seems that when they see the chair they freak out and think that I need to be taken care of all the time, a 5 minute conversation with me will tell you that I don’t need help with anything except maybe reaching stuff on a top shelf but I have a grabber for that. I had no problem dating back then and I am still the same person as I was before, just a little shorter and with a new accessory plus a lot smarter.  Well, no matter what I will keep looking and talking to women to find the right one, I cannot give up now. Plus, I like to say this about most things in life, I’ve been through a lot worse. 

         Getting support for the conditions I have is sometimes very challenging.  I have a great support system with my parents who have stood by me for everything and truly keep me going and some great friends that help me out.  It is hard to find anyone that has gone through the same sort of problems I have with Addison’s and GBS with Scheuremann’s mixed in. But I still try not to give up hope because sometimes that is all you have.  The important thing to remember is that every person goes through something but it is not our place to say which conditions are better or worse. I try to do my best helping people with any of these conditions because we can all use a little help, no matter how tough you think you are.  I have some really good friends that help me out with things and I am grateful of the support around me. One of the best coping mechanisms is laughter, if you cannot laugh at yourself then life is going to be pretty boring, no matter what you are going through. Now, onto the story.