This is where I will put my biography information.
This is a quick run-down of my life from diagnosis to present.
- Diagnosed with Ulcerative Colitis at age 17
- Went on Meds to keep everything under control
WORKING ON CLEANING UP AND ORGANIZING THE INFORMATION BELOW. SORRY FOR ALL THE DELAYS.
I mentioned I was disabled. Well, first of all, I have asperger's syndrome. Not a physical disability, more of a social disorder. That might explain the chaoticness of my emails and my lack of inability to know when I've "crossed that line," socially speaking. I have a tendency to ramble on about minutia things and really don't have inhibitions about talking about any topic. Just keep that in mind. I do have an eidetic memory, mainly when it comes to things I see like videos. To a lesser extent, audio. And an even lesser extent, things I read. I also have had an IQ of around 187 since I was in 6th grade. I still take online IQ tests every few years to see how it is declining. As of 3 years ago it still averaged 185 out of 10 different tests. I don't know why I feel like you need to know that exactly. I think it will help explain some of the comments I have made in the Wiki Forums and Message Walls, etc. My physical disability is a very long story. Basically, and this is a short short version, I was diagnosed with Ulcerative Colitis at age 17. After first being misdiagnosed with Cystic Fibrosis and being told I wouldn't make it to my 18th birthday. Needless to say, I got a 2nd opinion. After a few years of being on medication that was working, it stopped working. At the time, I was working on a Help Desk at General Electric Appliance Park in Louisville, and just got so sick I had to quit working. I was referred to a Gastroenterology Surgeon who said I needed immediate surgery to remove my entire colon. That was supposed to be a cure for all my Ulcerative Colitis symptoms. Again, very short version, even though it's taken a lot of lines in this email (LoL), it did not help, I only got worse. I had my colon removed in 2002 and as of early last year I was CORRECTLY diagnosed by the same Gastro Surgeon with having Severe Chronic Crohn's Disease. And not having a colon only makes things 10x worse for me. I'm currently on the right kind of meds, but unable to leave my house to drive or for any activity. I can only, barely, go to the doctor when I need to. Diarrhea is the main symptom right now. Again, not having a colon only makes things worse. I suffer through anywhere from 7-25 bowel movements a day. I can become dehydrated in one day if I eat the wrong thing, or if I have a bad enough flare up. I can also lose up to 15 pounds in one day in the same situation. The meds I am on now prevent the flare ups from being as bad and as frequent, but it's still enough to keep me from doing anything. I just spend too much time in the bathroom, anywhere from 10-15 hours per day. I know this is a wonderful topic. Welcome to my world! I lost all dignity when it comes to all this years ago. Crohn's is a serious disease anyway and I have one of the worst cases in the world. My Gastro Surgeon is Dr. Galandiuk. She's the #1 doctor in that area in the world. Literally. She travels all over the world teaching her methods and researching new ideas. She told me she has only seen one person who is worse off than I am. Next month I'll be having an experimental surgery that she just came up with a few years ago. I'll be the 9th or 10th person to go through it. So far of the 2 people that I know of that have had the surgery and are healed have improved greatly and healed completely. I won't go into details on this one, it's far too graphic and frankly embarrassing. Even for me. If successful, it will not be a cure, but should improve my quality of life a bit. I can use all that I can get. Another thing you should know is since the surgery in 2002, I have not been able to lay flat in a bed, either my stomach, or on either side. I have to lay on a couch with my head and feet elevated. I got rid of my bed years ago and sleep on the couch in the same position everyday. For some reason, I think it's the scar tissue from the surgery in 2002, the pain is just too severe in my abdomen and prevents me from laying flat. The only thing she can do to fix it, if it is the scar tissue, is to have another surgery to remove the tissue, which would cause more scar tissue. Catch 21. No other doctor has been able to find anything besides the scar tissue that would cause so much pain. So as a result of my frequent trips to the bathroom and inability to lay comfortably, I'm lucky if I get 3-4 hours of sleep a day. Since 2002. And the number of times I have slept for more than 2 hours at a time, I can count on one hand. Getting "naps" of only an hour or so a few times a day just is not the same as sleeping for 8 hours straight. So between my body's inability to absorb nutrients from the food I eat and the lack of sleep I am able to get, I pretty much stay exhausted all the time. When I have flare ups, which occur every 2-3 weeks and last anywhere from 3-10 days, I get even worse. But like I said, the meds I am on now are the best I have been on since all this started. I won't even tell you how bad things were before this combination of meds. It will frighten you. LoL On a brighter note though, having all this free time on my hands has allowed me to understand and grow my faith and knowledge of the Bible. I truly believe that had I not gotten sick how I did and when I did I never would've come back to God. As messed up as it sounds, I was meant for all this, it appears. Believe me when I say I have prayed for healing, and so has my family. I live with my parents who pretty much do everything for me. My dad is disabled too with heart and lung issues. My mom is the only one who works. I'm an only child. I have no girlfriend, wife, or children. That is all depressing, but I am very thankful I have my parents and between all our incomes we can afford the house we live in and pay all the bills. That's probably enough for now. I can go into details about my religious experiences another time. You need to get better anyway! I hope all this doesn't freak you out. I appreciate very much having someone to talk to about all this. All of my friends are married with children (I miss Al Bundy) so I understand they all have lives and don't like to be bothered by my issues. Not that I plan on dumping everything on you, LoL. As you will find out, going through all this makes for great witnessing and praising for the Lord. Just one more thing. You mentioned you were almost done with the BA Wiki. If you like, I can take over as admin for you for that site. It's put together enough already that I can just continue filling out the Quest data and various things. I've gotten used to the format and language for that site. I have you to thank for that. I know I probably drove you crazy asking about every little detail. Heheh. Sorry about that. It didn't go to waste though. I keep all my notes in Google Drive though. I don't use notebooks. I've developed a sufficient system for tracking the Quests and Rewards and triggers and requirements. If you like I can share it with you. I'd rather not share it like I did my Neighbors spreadsheet though. I'll have to figure out how to give it a password and send it to you that way. If you're even interested in looking at it. God sure does work in mysterious and amazing ways the way you took over the Wiki and I came along interested in what you were doing. I know you're an electrical engineer and have your own way of doing the Wiki. I used to be a programmer, so I understand where you're coming from, for the most part. I haven't done any actual programming since C was the language of choice though. LoL It's pretty hard for me to even sit here on a laptop I have by my couch. It's too heavy to lay on my stomach and too hot to lay on my legs so I have it on a tray and I have to sit on the edge of the couch in order to type on it. I just got a smart phone late last year and anything I can do on there, I do it that way. Some things like most emailing and Wiki editing are better done on the laptop though. See I'm just rambling now. Have a good and blessed day! Hope you get to feeling better soon. I hate the way the flu makes you feel. The flu plus a stomach virus is how a flare up makes me feel so I know very well how you feel right now. -Slim aka CB P.S. I have CoolBurn tattooed on my arm. That's how much the name means to me. I got it before I truly came back to God. I wish now I hadn't, but I think God understands me more than I do. :o)
I have to be honest, the first few times I read your email back to me, I couldn't tell if you were being sarcastic and making fun of me and my issues, or if you were serious. If it weren't for the fact that I've heard of "bare handedness" from a few people that I know who've been to Afghanistan, etc, I still wouldn't think you were being serious! LoL And I do use tp, but only for the heavy lifting and I use moist wipes for everything else. I have to put so much ointment and lotion on my rear that I hardly notice the rawness. OK, well, here's the bad part of my email. I am not healthy enough to keep keeping track of BA the way I have been. I am having a very hard time right now. I'm doing everything I can not to have to go to the hospital before my surgery next month. I am in a lot of pain and my abscess on my small intestine is draining and bleeding a lot right now. I probably won't be on the laptop much at all between now and after New Year's. I'll still be playing Westbound, BA, Jungle Town, Golden Kingdom, and Shipwrecked, but I won't be keeping notes or anything like that. It's up to you if you want to pass the Admin over to me on BA, or put it up for adoption. At least I would be able to pass it to someone who will take as good of care as you have with it. That decision is your's. I'm going to be fading in the background as Michelle takes over (completely) for Westbound. (Man I hope you get your laptop back - not only for that reason, but I know how moch I would panic if someone stole mine!) The surgery I'll be having next month is an experimental surgery. I don't know if I got to cover that part or not. It's called a Stem Cell Fistula Plug procedure. What they'll do is do liposuction on my stomach to get fat cells. They'll then separate out the stem cells from my own fat and stuff the stem cells inside the fistulas formed from the abscess in my small intestine. I'll only be like the 8th or 9th person in the world to have this done. So far it's worked well in the others before me, so other than the liposuction part, I'm looking forward to it. It won't cure my Crohn's, far from it, but it should help give me more energy which I desperately need. I'm here man if you ever need anything!! Take your time responding. I probably won't keep an eyee on my Gmail like I usually do. It all depends on how well this fistula thing goes over the next few days.
One more quick thing. My mom told me the Lord is healing my abscess and fistulas so I won't have to have the surgery next month. If that's what is going on with it, you bet your butt I'll be shouting that one from the mountaintops!!
i'm kinda bummed and kinda delighted.. i talked to my dr yesterday and my surgery won't happen until either the last friday of this month (the day before my birthday - joy) or the middle of january.. so now i get to wait in pain and suffer til then.. on the bright side it gives me a chance to get back on my feet and regain some lost strength between now and then.. i'd hate to have the surgery (outpatient) and them have to keep me because i'm dehydrated or something.. i dunno.. i also want it to be over..
edit 09/23/2k15 Edit (to keep full control of this Wiki