Aug 08 2007

Weird…

Published by at 1:33 pm
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I don’t feel as hungry as I used to. I don’t get it. It’s like I’ve eaten my fill and I don’t want to overeat. I feel content with the amount of food I’m consuming. I went to the pizza buffet at Round Table with the guys and I didn’t over eat. Is this way it’s like to be “properly nourished”? I’ve been “malnourished” as is expected from Crohn’s, but I didn’t expect to see results this fast. I mean they say this drug works fast, but THIS fast? Maybe again this is my brain screwing with me, but it seems like I have more pigment in my skin since I got on this stuff. I’ve already noticed a difference this morning in the lack of pain in my joints, that I can tell is working quickly although as I type this my wrists hurt. Again today I feel great, better than last night, although I feel drowsy like I did yesterday. Expect a lot of posts about my health in the coming days, I want to track my day to day progress of how well the Remicade is doing. Overall I feel better than I’ve been since all this started and I’m pretty relaxed right now, which is saying a lot.

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Aug 07 2007

Remicade

Published by at 4:30 pm
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It wasn’t a big deal. I got a needle in me, some blood drawn, and got pumped full of some stuff. Overall it wasn’t painful or annoying, in fact I felt in a way like I slept in because I was half asleep to asleep during the whole thing. I don’t seem to be having reactions to the medication so I’m pretty happy about that. Between being nervous about the needle and nervious about reactions to the medication, these were my primary concerns. Now I just need to get over the fear of coming down deathly ill. That will pass in time I guess. I feel “better” but at the same time I feel quite drowsy. I don’t know how to think about it, we’ll see how I feel in the morning.

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Aug 05 2007

Simply, relaxing.

Published by at 11:22 pm
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Today I woke up late, had some breakfast, and jumped on first thing to do some homework. I did all my CIS homework, posts, and my mid-term only to be interupted in the middle by hearing that Baliku had just /gquit. After putting an immediate band-aide on the situation I jumped back to my mid-term and kicked it’s ass.

I played WoW for a little bit helping my brother blow through STV quests with his alt, then proceeded to play some Paper Mario. That game is so fun and relaxing, it’s nice on Sunday to get away from WoW and just do something non-WoW, but gaming related. I think I’m going to continue to do this. I mean even if I’m together with Kerrie on Sunday, when I get home wind down with an hour or two of Mario before bed. Good times.

Ended up having a long talk with Brian about his health and his friendship with Amanda. It seems like she is putting undo distance between them amoung other things. I tried to give him as much advice as I could and tried to make him not feel “crazy” about what is going on. I just want the three of them to be in game again, drama free, and not hating each other. Regardless about what goes on IRL, it shouldn’t affect everyone’s ability to enjoy each other’s time in game and having fun.

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Aug 01 2007

Remicade first appointment: Tuesday

Published by at 8:34 am
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It’s both a good thing because the hope is that I will be better. The daunting thought is that it’s the first treatment of the rest of my life. Every two months I will be coming back and getting more of this stuff pumped into me. Meh, I guess it’s really no different than a pill every day for the rest of my life…

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Jul 31 2007

Out of control?!?

Published by at 2:08 pm
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My brain is out of control. I don’t know what I’m doing. I think the root of it all is my health. I think deep down I have no real control over my illness, so I’m trying to make everything right. I’m trying to make everything perfect and complete because this is one aspect of myself that I can’t fix myself, not directly so I feel out of control and I’m trying to medicate myself by making everything else perfect. When those things don’t go as planned I take it extra hard.

Is this what depression is like? Feeling out of control and redirecting my own misunderstood emotions onto other things? I’m used to maybe obsessing a little bit about WoW, but not to the degree I have been. I am getting depressed over the lack of coordination and getting upset at raids for no decent reason. This isn’t like me. I’m obssessing over things that normally I don’t care about, or if I do, it’s not to this degree. My brain is so scrabled now that I can’t focus on school, as a result I’m WAY behind on my math class (which is self-paced). I’m obssessing over my financials. I’m obssessing over a my house plans. I’m obsessing about Kerrie, about “us”. I’m obssessed with helping Kerrie with her business. I want to help her launch her website and get wrapped up in making her business launch “perfect”. I’ve started obssessing about my weight. What ever random thought enters my brain I start obssessing about it and I can’t stop until I redirect my attention to something else.

I’m not acting like myself and I think my parents are seeing it and being all worried. My dad brought me coffee yesterday, in the middle of the evening, which is not… normal. How do I break this cycle. Do I shut everything off? Do I shut half the things off in my life right now? Do I need to spend a night just lost in my own self thought? Am I going crazy? I’m sneezing again (my weird self defense mechanism), this tells me how worried I am about this subject. Sigh… I’m confused.

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Jul 26 2007

Drugs aren’t working

Published by at 11:44 am
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I told my doctor how things were going with my drugs and he agreed based on my continued symptoms and the degree of them that the drugs aren’t working. In his mind I should have already been coming off the drugs, so since it’s not working he gave me two options.

Remicade which is an IV Infusion once every two months.

or

Azathioprine which is a once daily drug.

Both achieve ths same thing but work differently. Both have possible long term side affects. Both potentially I’m going to have to take for the rest of my life. One requires at first weekly blood tests then blood tests monthly because there are possible blood complications, marrow complications, liver, and paceras complications. The other has long term risk of never being able to come off of it. Both have increased risk of Lymphoma. One has been around for about 5 years, the other 10+ years. One I have to take for 3 months to see results and during that time I’ll have to take a systemic steroid, the other works within days of taking it.

There is no easy answer… but I must decide. I’m leaning toward the Remicade.

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Jun 18 2007

Knee at 95% – Bowels… Meh

Published by at 9:56 am
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Well my knee is almost back to status quo although my Crohn’s is doing kinda meh. I’m definitely not 100% and had a nasty sinus infection on Friday and had to call in sick. My Aunt Gretter is worrried about me and is sending me a bunch of stuff in email about Crohn’s (like I haven’t already done research myself), but it’s nice to know she cares and is thinking about me. I’m contemplating doing some healing rituals, it’s funny how regardless of religion people get more “spiritual” when they are in time of stress or illness. Kinda makes me feel like I should pay more attention to my beliefs.

On a more awesome and less health related note, the guild’s 1 year anniversary was on Friday and totally awesome. I took some decent sinus drugs, slept till 3:00 and the festivities began at 5:30. We had a really nice meeting in the Ring of Valor in Orgrimar (which was symbolic because we formed the guild in Org). Ray opened up with meeting with some trivia of the past. I gave a nice speach and recognized all the officers and members who have stuck with us through the thick and the thin. I took a lot of video including everyone taking turns waving at the camera. I’m going to make a nice video montage of all that. Finally we ended the evening by engaging in some world PVP and destroying ZG.

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Jun 05 2007

Ileocolic Crohn’s Disease (ICD)

Published by at 10:17 am
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So confirmed I have Ileocolic Crohn’s Disease (ICD) which affects both the ileum (the last part of the small intestine that connects to the large intestine) and the large intestine, accounts for fifty percent of cases of Crohn’s Disease. The disease can attack any part of the digestive tract, from mouth to anus.
http://en.wikipedia.org/wiki/Crohn’s_disease

Crohn’s disease is a chronic condition that cannot be cured. It is characterized by periods of improvement followed by episodes when symptoms flare up. With treatment, most people achieve a healthy height and weight, and the mortality rate for the disease is low. Crohn’s disease is associated with an increased risk of small bowel and colorectal carcinoma.

In summary, my doctor is putting me on budesonide which is a special, expensive steroid which I have to take 3 pills once a day. This steroid is very cool because it only activates in the intestines which means I don’t get all the nasty side affects of steroids.

I’ll get through it.

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Jun 04 2007

1 in 51,460

Published by at 2:09 pm
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Yeah I’m a winner! Doh, not really. I think I am one of the 10,000 estimated people in North America with the rare bowel disease known as Ulcerative Colitis.
http://en.wikipedia.org/wiki/Ulcerative_colitis.

Confirmation back from the doctor tomorrow but this article mentions arthritic knees and aphthous ulcers if the mouth which I’ve gotten before (on the sides, top, and inner lips). The pictures look almost exactly like what my colon looked like when my doctor showed me. Sounds like I have “Left-sided colitis” because it’s the upper portion of the color and the very bottom portion of the small intestine. It probably started when I was 25 or younger when I thought I had gallstones I probably had pain the colon and it flaring up. They also say that with Ulcerative Colitis you have continuous area of inflammation (which is what the doctor saw) where as Crohn’s is patchy. Also interestingly enough my Aunt Liz has Ulcerative Colitis. So the guess in the medical community that it’s genetic isn’t a bad guess when 2 in 10,0000 estimated people in North America (of 515,600,000 people) are related.

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May 29 2007

Doing a lot better

Published by at 12:43 pm
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So Friday along with all the stuff I got done I also went by and finally got my knee brace. It’s made a big difference and even though at times it’s uncomfortable on my skin, it’s still very nice to have. I feel like RoboCop when I have it on. The doctor says I have a “severe anterolateral femoral condylar contusion and medial patellar contusion… consistent with a trancient lateral dislocation of the patella”. Translaction: “severely tore up the tendon on the right side of the left knee because I dislocated my knee cap to the left outside of the knee”. Apprently the tendon on the bottom side of the knee is damaged too, though perfectly “intact”.

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