It's been way too long....

I have been away from this blog for way too long.  And in my head, my reasoning was a good one.  Things have been going great for me!  My MS is really, really being controlled by the miracle poison, uh, I mean, drug, Tysabri.  I'm back to full duty at work, which means when we do a search warrant I can be the first one in!  Now if I can just convince someone to refuse to answer the door so I can bust it down.....

So, since everything has been so good, I felt like I didn't really have anything to write about.  And then a friend mentioned to me that he thought I should still be writing, in case someone was going through what I went through just a year ago.  Maybe they would want to hear that things really can get better.  I need to remember that 2 years ago I was using a walker....now I'm busting down doors (all legally, of course).

And, well, the timing really couldn't be better.  It was two years ago that I was dizzy and thinking that I had an ear or sinus infection.  My diagnosis anniversary is next week....

I have been on Tysabri for a year now.  In fact, I am getting my semi-annual MRI later this morning to make sure everything is still good.  Frankly, I don't think I need the MRI to tell me that.  I can go by what I feel, and I have gotten very good at listening and reading my body.  For example, I can walk a pretty straight line!  I haven't tipped over in a very long time.  I still like my naps, but if you know me, you know that I liked them long before MS. 

So, I may have a picture or two of my brain in the next day or so, for a couple of reasons....one, so I can see if my favorite lesion is still with me, and two, so I can prove to some of you that I actually have one (a brain, that is).

I'll be back soon and more frequently....Get ready.

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Knowledge is Power....

Usually.  In this case, it just gives me more to be concerned with. 

Tomorrow, I start my new MS treatment, Tysabri.  It's an infusion that I will get every 4 weeks at the Barrett Center at UC.  I have read through all of the information I got from my doctor, including the big-worded medication guide given out by the pharmaceutical company.  Here is what sticks out:

"Tysabri increases your chance of getting a rare brain infection that usually causes death or severe disability.  This infection is called progressive multifocal leukoencephalopathy (PML)."

Those 2 sentences are the first thing written on every piece of literature and it's always in big, bold letters.  I am starting to think it's like the signs on the road when the bridge is out, "Bridge out in 1000ft", "Turn around, Bridge out", and finally, "Last chance..."

With the course of my MS, I sort of feel like the bridge is out.  New lesions on every MRI, new symptoms, and it's not been a year yet.  If I don't do something more aggressive now, my quality of life is sure to continue to spiral downward.  I would like to dance at my 40th birthday party in September.

So, now that I knew a lot about the really big, bad side effect, I started to think about the benefits.  No one has gotten PML in the first year of Tysabri treatment.  It is supposed to significantly cut down the number of relapses.  There is a small possibility that it may help some of the symptoms I already have.  And, most people get no new lesions while on the treatment.

For me, it was kind of obvious.  The benefits definitely outweigh the risks.

But, that doesn't mean I'm not nervous to get the first treatment over with.  And I'm hoping that I don't start with my hypochondriac-ness and think every twinge I feel is something terrible lurking in the corner of my brain. 

I did let everyone know what to look for just in case I start with a weird reaction or side effect.  One thing is yellowing of the skin and eyes.  The other is if I start acting really wacky.  I have gotten responses that ranged from, "How will we know?", "More wackier than usual?", "I think I'll just watch for the yellow eyes...".

I also have been threatened not to die on my friend's couch tomorrow night, post-infusion. 

With friends like these.....I'm a lucky chick.

Ahhh, Normalcy....

Well, it seems I'm finally back to "normal".  Finished my 5 days of steroids, and my week or so of using a cane.  I'm actually kind of glad I had my first real relapse.  Now all the mystique is gone and I don't have to worry about when it's going to hit me, or what it's going to feel like.  The one thing I was definitely not ready for, was the weird exhaustion.  I had maybe been a little more tired when I was first diagnosed, and I knew I needed to make sure I got my rest (you will get no arguing out of me when it comes to taking naps...) but this was a lot different.  I had trouble getting up my stairs to my bedroom.  I haven't had that happen yet.  Luckily it was the weekend and I spent time just resting.  By Monday, I was back at regular work with regular hours and, while I took a nap before dinner, I was almost back to my normal laziness.  By the end of the week, you wouldn't know anything was wrong with me except for the occasional stumbling, and then you would just think I was tipsy.

Then I had my follow-up with my neurologist.  He agreed that I am back to my pre-relapse self.  My walk is still off, but honestly, I'm not really expecting that to ever get back to normal.  I kind of thought we would stay the way things are, but he had other plans.  Since it's not even been a year since I was diagnosed, and I have been on Betaseron since June, and since every time i get a MRI, I come up with new lesions, my doctor thought I should consider something else.  Tysabri.  He told me some of the risks and I read about them also.  Going with what I know from him and what I read, I think, for me, the benefits outweigh the risks.  I can't keep getting new lesions and new symptoms.  I just can't.  If I do, my disability will most likely continue, which won't be good for me and my job, or just me personally.  As my bff, Renee (the mighty smart Microbiologist, who was able to read about the medicine and tell me what the big words meant) said, "Your brain is already being attacked...."  Um, thank you?

Tomorrow I meet with the infusion specialist and will get all the inside scoop.  Should be interesting, and I hope only mildly frightening.

Day 3 of Infusion

And apparently, the third time actually is a charm when sticking me for the new IV, cause it took 3 times.  Finally, she got a good one, unfortunately it's in the vein by my thumb and wrist on my right hand, so it makes doing certain things mighty tricky.

I'm having a mental issue with deciding whether or not I have to get my cane back out.  My balance hasn't been this bad since the beginning.  It's just really hard for me to go back to that.  I had always had some balance issues, but it's always been controllable.  It's not so much right now.

And of course, now that I have the steroids coursing through my body, a new set of questions comes up - will the steroids work?  When will the inflammation go down?  Will my balance get back to normal?

Good thing I'm an inquisitive one.  I think the questions are just going to keep piling up.

Have they made a "Mary Alert" yet?

'cause clearly on Sunday I needed one.  I had to make a quick trip to the bank, to switch some money around to cover for my large co-pay for my medicine. Now on any other day, I know my way to my bank. Today, I turned left off of my street and it totally confused me. I finally got to an intersection and actually said outloud "Mary, where are you?".  I finally made it to the bank, just by going the really really long way.  I'm guessing this is some sort of the multiple sclerosis fog I have been hearing about.  Can't wait til it starts to hug me too!

but once I was safely home, I laid on the couch and enjoyed the superbowl in a very controlled environment, watched over by my cats.  Now if only I can teach them to bring me snacks while I'm laid up.

Infusion, confusion

Saturday, I get up at a decent hour to clean my house before the home health nurse gets here to start my IV, even though I have it on pretty good authority that they don't really care too much as long as you don't have bed bugs, which, thankfully I do not.  I also wanted to take a shower before the iv, cause it's kinda hard to take one with it in.  The nurse was nice,but had to stick me twice. Then broke the news that they would  have to come back and change it on Monday, some crazy rule about only having it in for 3 days. Oh well.  The nurse stayed with me throuhout my infusion to make sure I didn't have a reaction.  The good thing was that "Wipeout" was on.  I gotta admit that I kinda enjoyed laughing at people getting hit in the face and wiping out, and not just because I was hooked up to crazy medicine.