20091231

Finally

The holidays are coming to an end. That is actually a good thing. As fun as it has been with Ms. K, I could certainly use some time to unwind.

I'm doing pretty well on the MS front, as I have mentioned before. I seem to be in a medicine induced remission that leaves my MR scans clean. Hopefully things will stay that way.

The Kid is doing great! She is growing in leaps and bounds. She is getting so fun to interact with, developing such a personality. Here is to hoping everything keeps going well.

So lastly I want to say Happy New year to all that keep up with my MS blog. Here is to hoping for another year of good news!

20091227

Expanding on my latest MRI

I went and saw my neurologist last week, and he is extremely pleased with my MRI results. He confirmed what the radiologist @ NW Comm said, that there was no enhancing activity, which I basically take as my MS going into remission thanks to the Tysabri. It's good stuff, now if they could just figure out why it is associated with PML. Man, I don't want to get that!

Merry Christmas, Happy holidays

A day late (two technically), but I just want to say thank you to the good folks at Biogen for creating Tysabri, a drug which has lead my MS to pretty much be in remission - if I'm understanding things correctly. I'd also like to thank my Neurologist Dr. George Katsamakis, a very cool dude with a major reputation in the area of MS. And lastly I'd like to thank my body's immune system for reacting positively to my new treatment, and no longer causing inflammation in my brain. Wait, it's thanksgiving where you give thanks. Man, I'm like a month off. Oh well...

Merry Christmas (or applicable holiday) to all! ; )

20091216

seriously?

I can't believe it. I felt like it was months since my last infusion last month. Unfortunately my next one is one week away. Bummer. I'll also be seeing my neurologist soon.

20091209

Went for my six month Tysabri MRI checkup

And early reports are that everything is looking good. Unofficially, no legions enhanced w/contrast (I am not incurring any attacks), and that is the most important part from what I understand. I'll have Shelby debrief me tomorrow, and I'll be seeing Dr. K later this month for the official report. Hopefully Dr. K will agree the MRI looks good, and my new treatment Tysabri is working at the best level one could hope. Of course, my loving wife Shelby will get me a CD of the test in the next few days. I'll post a few images if anyone is interested, after I scrub any very personal information. Of course, everything I am saying could be false. My MS could just be quiet and is waiting to strike. Though how I hope it is not. Time will tell.

20091125

getting infused

im @ hospital getting my next tysabri infusion. Everything is going well, except one of the nurses with whom I most often deal is a packers fan : (
And I just realized i'm probably one of the few tysabri patients, if not the only one, who does live updates during the infusion.
And the hardest part, providing updates w/ one hand!


20091124

Already

When I got my last infusion, like always, I felt that my infusion was a long time away. But here it is scheduled for tomorrow : ( FML : (
Figures I'd get the disease which is only treatable via injections. FMLx2

20091122

Early thanksgiving

@ the hospital this year getting my infusion. My date to go, if strictly followed, would've been thanksgiving day, but who wants to spend thanksgiving getting infused? Not to mention that the infusion clinic isn't open on that day. Who wants to go see the walking dead on a happy day you are supposed to spend with you family.

The walking dead to which I am referring is cancer patients that go to the infusion center to receive their chemotherapy. but I'd rather deal with nurses somewhat skilled at giving IVs - most of the people going to the clinic have 'mediports' (no thanks, I'll deal with a needlestick every 28 days). I hear the lady at my doctor's infusion site is absolutely terrible at starting IVs, and knowing how I am with needles, that would be absolute terror every 28 days.

None-the-less, I'm expecting a typical infusion without trouble or issue.


teh suxor

20091116

So all is quiet on my MS front

Nothing exciting to post, and I suppose that is a good thing. The MS fairy has never brought me a good gift.
Never-the-less, I'm doing extremely well. And that is the most important part.
What neurological deficits I do possess are minimal and barely show. I don't think anyone would know something is wrong with me just by looking at me.

I'm only suffering from numbness in my left cheek and hand which I had acquired from that first nasty attack I had. Its a good thing I had just seen a nuerologist - due to my wife's using me as a test subject in a new MRI unit they had at her hospital - as I was put on a oral steroids (prednisone). Oral steroids aren't anything when compared to solu-medrol (aka methylprednisolone). That stuff taught me what hunger really is. After constant eating and feeling so full I felt like I was going to puke and still feeling hungry and getting so bloated I felt like I was having a period. That is when I realize how serious this disease can be. Without a doubt this was the worst episode from which I suffered.

The second diagnosed attack that I had - that lead to me being put on Avonex (Interferon Beta-1a) and then Tysabri (Natalizumab) - was a bought of optic neuritis. Man, was that terrible! I thankfully didn't have any vision loss, but I couldn't successfully track a single object with both of my eyes at the same time (aka I was crossed-eyed). I had to wear a pirate-patch during that episode. Man was that humiliating.

My first attack I didn't even realize was MS, as I hadn't yet had the MRI that revealed my condition. I thought it was just an ear infection as it had only lasted a week, but I clearly remember thinking to myself in passing, 'what if this is something more serious?' But that thought passed quicker than the symptoms. I had to reschedule an interview I had for a new job downtown, which I had landed and eventually quit two months later, as it seemed to be a lot more difficult than all the other jobs I had in my life, In retrospect I really think that was an attack.

So thats the story of my MS life, which I had to post the details as I have started a new TK blog.
I've already put a replacement server up @ home, but I think I'll leave this site on google's servers as they are much better equipped to handle traffic.

A good example...

of how idiotic people can be with the use of their words. I ran across an article slamming blockbuster , when I read David's synopsis from which the following is taken, '...someone in a cinema with what seemed to be a low resolution web cam and Multiple Sclerosis.'

Even though I don't believe in hell, I hope you rot in the seventh level of it for such a stupid statement you dumb cunt! I have MS, and I assure you I'm just as capable of holding a camera still as a person who doesn't have MS, probably more so as fatigu is a primary symptom, not spasticity. I suffer from a debilitating chronic disease which through no fault of my own I've been diagnosed. Let the jokes and criticism fly, you insensitive clod! (thanks to the millions of /. forum posters for that awesome statement)

Fuck you David, fuck you very much! I hope you are soon found to have MS, or something worse, so that someone can make an insensitive comment about your condition. FOAD!!!

FYI:
With today's treatments MS isn't what it used to be. One can avoid disease progression with such treatments, and therefore people with MS are capable of holding a camera still. A more appropriate choice would be Parkinson's Disease (aka Michael J Fox's disease), just in case you wanted to insult more of your readers. I wish a terrible AIDS death upon you aussie cunt!

BTW, those are terrible movies with the exception of HaK:EFGB. So I guess that makes you a cunt with bad taste. Fuck you you fucking fuck! Its called a movie theater!

20090930

4th infusion

So I'm going for my 4th infusion tomorrow (01-10-09).

I've got to say that the IV once/month is much easier than the huge needle in your leg once-a-week.

No MS related news though, the medications I've been on seem to be working! I say while I'm knocking on wood (or performing some other ritualistic ceremony)

20090910

Politics : (

You know, when politicians were playing games with issues that didn't really matter, it was laughable. Now that they're playing politics with something that is really broken and affects me directly, it really pisses me off. Stop playing politics you fucking useless politicians, you can go back to the game after you fix this issue that affects so many Americans. For the 'You Lie' guy, he should be dragged onto the capital steps and shot right on the primetime news. This isn't about rep v. dems anymore, this is about the people of American. Fucking stop bickering and fix it. Lead, follow or get out of the way.

20090729

Bad Science

WTF?^^ I need to start a bad science blog! This article says traffic jams are reduced by some of the people in that jam drive like jerks, but makes no mention of increased accidents or other risks. Bad science at its core.

Wow

Too bad that clunkers car program wasn't in effect when we got the civic. It is easily a 10mpg gain. The truck is listed at 17 combined (thats a stretch), and the civic gets 36 hwy. That would've been a $4,500 credit. Suprise, guess the government isn't able to quickly put things into effect. Check fuelecconomy.gov for your info

It really grinds my gears

You know what pisses me off. I have a disease that is abbreviated MS. Of all the illnesses out there, I get the one that resembles Micro$oft, which as you can tell by my blog I really dislike. I think I'd still rather have MS than AIDS or Cancer or something else fatal.

Microoo!

Yahoo and Micro$oft are partnering for a Search deal. Sucks

20090728

(Mostly) Everything is moved over

I've changed DNS settings on most everything and moved over to google based hosting...except for the michaeljohnston.net domain, still gotta figure out what to do with that. Also have to give this site some serious customations...keep your eye out.

The old waiting game

known as DNS propagation.

UH-OH

I think the mainboard on my server crapped out. I'm getting power, just no output. Perhaps its the video card, but I don't think I'm hearing any POST beeps. Tragic : ( I'll be moving the sites to new homes as time allows. At least the HDDs should be intact, as i havent made a backup in a long time : (

20090726

Tainted Kernel Replacement

My server took a nasty dump. I'll use this page until I get the server worked out.