The Coburn Blog

Well,  after a long semester, and a short holiday,  my short hiatus before spring semester, is coming to a close.

On a side note, since I’ve been having learning issues at school lately. Reading / understanding my textbooks, and understanding what I listen to on tape, I decided to take the colleges advice, and have myself tested at the Bowen Center, to see what my problem with learning, and memorizing material for tests, is about, because anyone who knows me, knows I have never passed a test in my entire life; grade school, blind school, college, anywhere, homework I have always done ok at, with parents or someone elses help, so I had to find out what the heck that was about.

After they ran a series of memory tests on me, they discovered I have a condition, probably born with it my therapist thinks, called Autism Spectrum, or a more specific name for it is Asperger’s Syndrome. I know you hear the word “Autism” and think of someone who is retarded, screams alot, or mentally disabled, but that is not true. The Spectrum part is important. Since my therapist told me about that, I have been reading up on the subject, and ASD patients generally have problems with

1. an inability to relate to people
2. Impairment of social and interpersonal communication
3. referring to self in 3rd person, Impairment of imagination
4. Narrow interests (the computer, and technology in general thats it)
5. Non-verbal communication problems (which could be vision related too)
6. Makes factual comments, often irrelevant to the social situation
7. Literal interpretation
8. inability to fully understand ones condition (definitely true)
9. difficulty in generalizing concepts (I think this is one of the issues I have with reading & listening, along with a lack of imagination)
10. Inability to be Tactful (which I know I have)

I also notice, problems with short term memory, but my therapist was saying, my lack of imagination and generalizing concepts, is the main reason why I am not able to comprehend what I read and hear alot of times. Reading takes imagination, especially when your reading a a short story or novel. I guess I hadn’t thought about it that way before. The interpersonal communication thing didn’t surprise me at all. Its like my brother inlaw says “The computer is my outlet” which is exactally it. I feel more comfortable talking to people in writing, then I do face to face. When I do write, its all “thesis like”; logical, more lengthy then it has to be, no ability to generalize what I write in a brief and “to the point” manner, inability to be tactful towards other people, which is probably what makes me so unpopular on message boards.

He says a lack of verbal communication the number one symptom of AS, and he noticed it almost immediately in me, especially when I would repeat the same sentence over and over in different wordings. Like I told him, I’m not aware myself that I repeat myself when I write like this. How I wasn’t able to, even verbally, summarize a short story, into a brief manner, like when you go up in front of a class and give a book report for example, telling what the “plot” of the story is, I can’t do that even with movies. He explains, Its not so much a phoba, as it is, I just don’t know how to communicate with people verbally. I even prefer email and writing notes, over telephone communication, and I repeat myself alot when you do get me to say something, and I go on and on about that topic. I also do that “excited thing” that my sisters have always picked on and laughed at me about since I was a kid? Thats an AS symptom also, so I finally figured out what that silly thing I do is all about. I knew I couldn’t control it, I just never knew why it happened, and I still do that excited thing to this day, by the way. Its hard to explain, its like my fingers twitch really fast or something, hard to explain without showing a motion video of it. I’m just better at hiding it then I used to be. hehe.

Even though all this is mentally related, I am still an intelligent person, just a logical thinker is all, which again didn’t surprise me at all. I am not stupid, or crazy, which is a very good thing. hehe. I’m just happy to know what it finally is after all these years of wondering, so the school can teach me how to learn better, and I can finally start getting better grades in school hopefully.

After all this time, I finally understand, why I write 10 page thesis blog posts, write these real technical lengthy emails, technical and lengthy forum posts that everyone I come into contact with seems to get offended over, yet I can’t read 2 sentences out of a book and understand a word of it, read or listen to a book and not be able to form a picture in my head of whats going on in the story, or listen to a 20 minute lecture, on tape or in person, and not understand any of it. after all this time, its as simple as AS. You don’t know how much of a relief that is to me to finally know what is going on in my head. I “knew” it wasn’t vision related. HA!!

I’m not sure if I mentioned this or not, but I found out from one of my friends in Ft Wayne, that there is a National Federation for the Blind local Chapter in Columbia City, which has really been a wonderful Organization to get involved in.

okay, now that I am no longer blacklisted from my own website, hehe, I can make a post to my blog. Oh that was just too funny. For anyone running Wordpress, there is an update to Bad Behavior that fixes a bug from blog owners being blacklisted from their own blogs. Oh that is too funny.

Anyway, this is soo cool! The company that developed the software I use to read the computer screen with, aisquared, has just released a new product called Zoomtext USB that I am extremely happy about today!

The great thing about this product, is it will open up the world of working with Computers for a living, for me . Oh man, you just can’t imagine how excited I am about this product. The product will set me back $100 for the upgrade, which I am hoping I get for Christmas so I can purchase this thing. I don’t know, I hope so.

What is so neat about this, I’ll be able to take my copy of Zoomtext, with me to any Computer I do service on, so lets say I’m working for a company, and they want me to do field work at someones house. All I’d have to do, is plug this little baby in, and instantly have the ability to work on that clients Computer, without having to put any special software on it. This will open up a world of possibilities for me. Field Technician, Systems Administrator, Network Engineer, whatever field I decide to get into. I must say, this has got to be, the coolest thing.

Right now, I am blogging from Ivy Tech.

This is really cool, for Windows Mobile 5.0 enabled smartphones

Smart Hal - Now your Talking!

Since we use Verizon, I looked up WM 5.0 enabled phones. and I like the Verizon Wireless PN-820 smartphone, which looks real slick. This is the phone that I want. Of course, its way beyond my budget, but a guy can dream, can’t he?

Looks like one of those flip-style phones that we like. I’m not much into surfing the web on a telephone, but with this I could run speech enabled software, so my phone would actually be useful to me. It would speak the numbers to me, speak if I have new voice messages, and all that cool stuff.

The CCFA finally posted a news article about The Specific Carbohydrate Diet the other day.. Of course, I have a couple of gripes about this:

http://www.ccfa.org/about/news/scd

First off, I know people with Crohns Disease, who eat nothing but froot loops all day, because they don’t think they can tollerate anything else. You mean to tell me, Ms Gordon, that you can find a doctor that would tell me a bowl of froot loops, is more nutritous then fresh fruits and vegetables?? I DON’T think so!!

Secondly, I highly doubt eating some fresh fruit, like a banana or some cantelope or watermelon, is going to make me any worse then I already am. common, I don’t believe that for a second either!

I mean, do you know how many people there are on Atkins out there in the world? who aren’t getting ANY carbohydrates at all just to loose weight? You can’t tell me SCD is any less-safe then Atkins, you can’t tell me that for a second. SCD is much different then Atkins, I get my carbohydrates by eating nutt flours, fruits, and vegetables. If I start loosing weight, all I have to do, is eat a bowl of apples, honey, and butter mixture, and that one dish alone has over 1,000 calories in it per serving, so don’t tell me SCD don’t have enough calories in it, I don’t believe that for a second either. Thats more calories then a chocolate bar.

The one thing I do agree with in that article though, is about the need for research. It would be nice to have clinical trials, proving what Elaine spent her life doing since the 1950’s. I would be willing to participate my time in these clinical trials, because thanks to SCD, I haven’t had diarrhea ONCE in 4 years, so I’d be willing to prove my testimony!

My story, however, is similar to the guy who has improved, but still suffers with Fistulas every now and then. That wasn’t me who she was talking about, but that has been my experience with it also. I think about it this way; if it wasn’t for SCD, it would be MUCH worse then a couple of Fistulas. If it wasn’t for SCD, I would have had my gall bladder removed along time ago. I know that for a fact, because before I started SCD, I was scheduled to have it removed, and then after I started SCD for the initial 3 weeks, my gall bladder problems went away. I mean, the x-ray tech at KCH even confirmed I had a bad gall bladder, but after I went on SCD, not only did my gall bladder clear up completely, but I haven’t had any problems with it since, and that was almost 5 years ago, so you can’t tell me SCD isn’t doing me some good.

Sure, I still have Fistulas, and I still have 9 areas within my colon that are still infected, but like my GI said, they aren’t any worse, or better, then they were 10 years ago, so what harm has SCD been on me, I ask? I don’t see any. Remicade and imuran haven’t done any better I can guarantee you that much, so I don’t see the harm.

One thing is for certain though, its not making me any worse.. I’ve been continuing to take my Imuran 50mg 2/day every day just as my doctor prescribes. I took Remicade for a year, and asside from a slight gain in weight, I saw no improvement.. So, their saying SCD could make that worse? I don’t buy it for a second! The only thing that could make me worse, is if I wasn’t getting my 5 major food groups in everyday, which I am, probably more so then most americans in the world today. How many people do you know who actually get all their 5 food groups in everyday? not many that I know of.

Take my step-daughter Angie for example, all she eats is fast food, chocolate, ummm romain noodles, mac-n-cheese, junk food like that, so, if I understand this article right, there saying SCD could be more harmful then a diet like that? LOL I don’t think so.. lol Thats what I think is most funny about this article. Why don’t they just come right out and say what their really trying to say there, that doctors get a portion of money from the pharmaceutical companies every time they write a prescription to a patient, so there not going to recommend anything that takes money away from their own pockets…

I mean, doctors are people too, don’t get me wrong, we all have our own opinion, and each of us has a right to our own opinion, doctors and patients alike, I am not disputing that. My doctors have been great, and they have more education and experience then I do, thats for sure, and they have been great friends of mine since the very beginning, but what I am saying, is this article is not entirely true, and SCD could only improve a persons condition, not worsen, I do not agree with that at all, and I don’t think I should be criticized, for having a sound, justified opinion on this issue. After all, she is right, there are much worse diets to worry about out there. So what if SCD doesn’t cure me, medicine hasn’t either, that isn’t the point. The point is, to “try”. Better to be passionate about something then sitting around doing nothing at all about it.

Reading this article makes me want to go to the fridge now and have some yummy almond flour bread, yummmieee!!!!

While doing research for school, I happened to stumble upon this little medpage article, regarding a link between the Rubella Virus and Inflammation (crohns disease family of illnesses)

More evidence links Rubella to Eye Inflammation

what I find most interesting about this article, Eye inflammation is the leading cause of Glaucoma, which is whats taking my sight now. Also, Crohns Disease is an inflammatory digestive tract disorder, so it only seems natural to assume the Rubella virus could cause more then just eye inflammation, why not digestive inflammation too, that only seems logical to assume a virus could spread to more then just a single area of the human body. Isn’t that what a virus does, spreads?

Also, Crohns disease typically hits adults in their early 20’s, which explains why it wasn’t diagnosed until then. I remember as far back as grade school, when family used to make fun of me for getting sick on family vacations, or having to goto the hospital for “gas”. My family was odiously joking, and mean well and I love them for that, but all these things are early symptoms of something I was born with for the most part, from my own findings. This would explain why I’m the only one, so far, with Crohns in the family. I mean, there are others, but those two didn’t get it until their 50’s and 60’s, which in those cases would probably be more environmental related.

Also another thing I find thats interesting, is according to Elaine’s website Breaking the vicious cycle Crohns can be caused by many different factors, not all are family related. Now, although she admits there is no cure for crohns, she does say, everyone has an overgrowth of bacteria in their body. Its just, by reducing the overgrowth, you reduce the symptoms most commonly associated with Crohn’s Disease. She doesn’t claim it to be a cure, no more then regular medical care and medication, but what she does say, is by eliminating the overgrowth, we reduce the inflammation, thus reducing the need for certain medications over time. This is basically all Elaine is saying for the most part. I think the diet gets a bad reputation in the media alot of times, for that very reason. She’s not saying its a cure, or a replacement for medical care and medication, she’s just saying the symptoms associated with Crohns get better, thus increasing the likelihood of going into remission, for longer periods of time. I would think, any medical doctor treating Crohns patients for a living, would be in favor of a treatment option like that, because its in their best intrest to see their patients conditions improve over time, using any means necessary, rather it be medication, or diet, or a combination.

However, even Elaine said, most patients while on the Specific Carbohydrate Diet, may wish to go off their medications. In these cases, she explicitly states, to tell your doctor if you choose to do this. Most people on SCD continue to take their medications, and continue to receive medical care. There are even several SCD friendly doctors around the state, which my friend Gay keeps a list of for anyone who is interested. There is one located in Indianapolis, for example, but I choose my doctors in Warsaw, Elkhart, and South Bend, because they’ve always taken the time to listen to me, and have always kept an open mind. My family doctor, for instance, said that I was doing good with my diet, and I know he would be the first one to tell me if I was doing something wrong. He’s always been a great friend to me, and I think thats whats important more then anything. its very important to keep that line of communication going with your doctors.

Those of us with Crohns, know that even while in remission, we still have Crohns Disease. This is because the symptoms can come and go. A proper Diet does not change this behavior, but what it does do, is decrease the dependence of medical drugs, but it has never claimed to be a replacement for medical care.

I’ve been on the diet for 4 years, and I still get flaires, depression, Fistulas, all these types of things that are commonly associated with Crohns Disease. So why be on the diet at all? because it reduces the need for me to be chained to a restroom the rest of my life. I may still have symptoms, but thanks to this diet, I no longer have to worry about being near a restroom when I leave my home. This is because I no longer have constipation or diarrhea symptoms, which leaves most with this illness chained to a restroom. I also gained from 129 and falling, to 178 and rising, which is a Good thing. It means, my body is able to absorb nutrients in the foods I eat, thus weight gain occurs.

Another important point to remember, the inflammation I have may not have improved, but it hasn’t gotten worse either, which is also a good thing. There is no cure for Crohns, so I’ll probably end up having this the rest of my life, meaning the inflammation will always be there. In my case, the Rubella Virus probably caused this, according to my own research, which means there isn’t anything I can do about it.

What I can do, however, is keep my symptoms down by watching what I eat, so the problem doesn’t get any worse. Also, it may be that someday these Fistulas will disappear, its not unheard of. If they do, it won’t be because of the diet, it will be because my body went into a brief remission period. That much I am sure of.

I just think its interesting, how all these different conditions I have, do seem related to each other. I just think its fascinating, because out of all the doctors I have; family physician, eye, GI, rectal surgeon, etc, not one of them have expressed the concern to research why all these different things are occurring all of a sudden. You know, like the television show “house” where his team of doctors sit around bouncing ideas back and forth to eachother. Sometimes I don’t think doctors in real life do that at all, that alot don’t even communicate with each other half the time. I’m learning in my SLA Academy class, that its important to work together as a team to discover a proposal of a solution to the project at hand. I figured, there’s got to be a relationship somewhere, and I think it all boils down to the Rubella, I really do, not only from this article about eye inflammation and Rubella, but also other articles I’ve read about Congenital Rubella Syndrome, and late manifestations, which are conditions that commonly occur later on in a persons life. I mean, it all fits, so thats gotta be what it is, even if I am alone in my thinking on this.

Now see, if I ever do loose my vision completely, I could just get one of these..

Sighted Guide Horse

Sighted Guide Horsey! I want one!! aren’t those CUTE!? They look like miniature ponies don’t they?

Just need someone to build me a barn, and I’d be all set. hehe Of course, the best idea would be to get a goat. sighted guide goat, there we go. Could ride on his back to take me to school, walk me around walmart, and eat the grass from our lawn.. No more mowing the stupid grass, WOOOHOOO!!!! hehe

Ya know, I wouldn’t mind the yardwork so much, if I had a rider. These push mowers are a pain in the butt. hehe. If it wasn’t for them stupid apples that fall all over the ground, and the bees from the rotten apples, and the weeds all around the inside and outside of the fance

At least now I understand why I can’t moe grass. I fussed and fussed with that growing up at my dads house. I never understood why I can’t moe grass in a straight line, until my independent living skills trainer explained it to me last month. She explains, its because I cannot see the blades of grass like normal people can, the lawn just looks “green” to me, I can’t see the grass itself, just the green color, so I am not able to see where the row was I mowed last.. I always knew that, just didn’t know how to explain it to anyone before. So like, when I moe down a row, I cannot see where I just went down, even if the grass in that row was much shorter, it all just looks “green” to me. She explains, that is why I can’t moe in a straight line, and why I miss big patches of grass in whole rows. So in this house, Susan has to moe. I do get out there and help with it though, because its physically hard for Susan to do by herself. She doesn’t have the strength in her arms to pull the string, so I have to get it started for her while she mows it. In the spots I go, its all crooked, and I miss whole rows of grass. Its perdy though, my dad can tell yah, even as a kid he used to get frustrated with me not being able to moe the grass right. but if I can’t I can’t.. She did tell me a couple of tricks to try though, like setting up 2 chairs and mowing towards the chairs. She doesn’t know how big my yard is, but she says for small yards that should work. In this yard it would take me all day to moe that way though, but it probably would work for small yards, smaller then this one I mean. hehe

I still like the goat idea, or just letting it all die and putting out astro turf! yeah!!! isn’t that what its called, that fake stuff, Astro Turf? hehehehe I did find on the internet one time, I can’t remember the website, but I could find it again, about a special kind of grass seed that only grows so tall, so you only have to moe like once a year at most. That’d be MY kind of grass seed! hehehe

One of the things that really gets me about the world today.

Anyone who is different, rather it be the disabled, someone who is really pretty, someone who is really ugly, someone who is heavy set, or someone who just happens to be a guy, in a womens world

always gets treated like a 2nd class citizen in this country. I’ve been legally blind my whole life. Due to Glaucoma, I have been loosing my sight little by little, plus I have Crohns on top of that, but I am a person just like anyone else; I laugh at funny jokes and at myself, I cried at 9/11, I watch American Idol, house, Law and Order, Iron Chef, and many other TV shows with the rest of the world, I am a person just like anyone else, who just happens to be blind, thats all.

Part of being a Christian, isn’t just talking to people you want to talk to, hanging out with people you want to hang out with, making friends with people you want to be friends with, part of being a Christian, and a good Leader, I think, in any job setting, is learning how to get along with everybody in life.. Its like the Bible says, one of my favorite passages:

” ‘Do not seek revenge or bear a grudge against one of your people, but love your neighbor as yourself. ” Leviticus 19:18

another good one:

“do not plot evil against your neighbor, and do not love to swear falsely. I hate all this,” declares the LORD. “Zechariah 8:16-18

There are reasons why this country is founded on Christian beliefs,. I have always believed that God puts us in situations we don’t like, for a reason. I think its to teach us, how to love one another better, teaching us how to not hold a grudge.. God has a funny way of working in our lives today though, doesn’t he? When we ask for riches, he makes us poor. When we ask for love, he breaks our heart and pairs us with the most unlikely person ever. When we ask for life, he gives us death. I think God puts us in those situations, to teach us how to be better christians. He gives us poverty so we can learn to appreciate what little we do have so when we do become rich one day, we don’t take our money for granted. When we loose a loved one, it teaches us to pay more attention to those who are still living and not take them for granted.. I believe there is a reason for everything, even though it may not seem apparent at first.

In conclusion, I believe disabled people are put on this earth for a reason; to teach others how to not take our luxuries for granted, and to teach others that love comes from within, not the outside wrapping. I believe we can all learn something from the disabled, if allowed the opportunity to reach out, inspire, and really listen to what they have to say to the world.