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.

New Lesions

I found out last Thursday that my MRI showed that I had new lesions in my neck.  My neck and spine have previously been untouched, but this shows that my MS is still active.  But my doc is jumping on it fast and will schedule 5 days of iv Solu-medrol to hopefully take the inflammation down.  Good thing I was at the grocery when he called, I picked up a few extra groceries so I could use my forced laziness to not leave my house too often while the IV is in.  On the flip side of that, my house is actually clean, so if anyone wants to visit. I will be kinda bored.

so on Friday when the pharmacy called to set up my infusion to begin on Saturday, I instantly became non-dizzy and could walk a semi-street line, I actually thought to myself, "Do I really need this? 5 days?"

Then the next morning, I woke up and stumbled into the wall. 5 days it is.

One of my best friends always says we are all on our own journey. I guess this is mine. Although, I would like to learn how to journey around the walls once in awhile.

Sometimes I like to sing the names of my medications....

To some of my favorite '80's songs.  Today, waiting on Lisa to pick me up for my second MRI of the week, I was enjoying my Ativan cocktail while humming the chorus of "Xanadu".  I think it fits quite well.  Sing it with me "Ativan.....Ativa-an".   See? Not bad.  Earlier in the night, say oh about 3 am when I couldn't sleep AT ALL, my mood was a little different and I really thought I would be singing to the tune of "Amadeus, Amadeus".  See what you think about this "Ativan, ativan, ativan, ativan, ativan, ativan, ativan, ativan, at-at-at-ativan oh, rock me ativan!"

It was a long night. 

I really thought I wasn't one to get nervous over things like this, it was just an MRI.  But when the last one didn't take because of my muscle spasms on the inside, that I can't even feel, messes it up, I guess I realize I'm at a new level.  It's a strange sensation to wish that the scans show something is wrong, or something new has raised it's ugly head.  I am kind of tried of being frustrated and thinking people look at me like there is nothing wrong with me.  Or when I stumble getting up from a chair, or walk into a wall.  First thought seems to be, what is she drinking!  And while I may have a glass of wine on occasion, it's not usually before work. 

I have been doing a lot of praying lately because of some work crossroads that I possibly will have to face.  About 4am this morning, I realized that while I may have said I was frustrated, I think I'm really scared.  Wacky things are going on and I'm just trying to deal with them the best I can.  I start to feel like I shouldn't ask people to help me, cause what if that's just the last time they got for me. 

I don't wanna be a bother.  I get that from my Aunt.

I'm gonna get in bed and read now. Tomorrow could be a whole other adventure, especially if the doctor calls.

Sigh....

Big day for me today! MRI of my brain, neck and spine.  I wake up on time, mainly because I didn't sleep well at all.  Got dresses, took my ativan. Fun drug, by the way. Kept me calm, comfortable and basically carefree! Happy-ish.  The main issue that I had with my symptoms is the tightening of my leg muscles and my brain's refusal to let me relax them. And then there is the little issue of my muscle spasms. Uncontrolled, of course.  So if I happen to walk by and hit or kick you, chances are you can blame that on the muscle spasms.  Chances are....

So now, I get to blame the spasms on going  back on Wednesday to finish the MRI. Apparently, even though I thought I was being still, the spasms inside made a lot of the pictures blurry.

I wanna be sedated.....

Another MRI? So soon?

I'm really, really looking forward to Monday!  No, really!  My doctor gave me Ativan to get through my very long MRI of my brain, neck and spine.  I haven't taken Ativan before, and I'm not opposed to new medications.  It's no Nyquil, of course....

I spent 2 hours at the neurologist's office today, discussing why I may be starting an episode...dizzy, funny eyes, twitching and muscle issues.  And hearing my doctor tell me that he doesn't know what the next few years hold for me.  I'm not mad with him, just frustrated with how many times I (and anyone with MS) has to hear the words, "I'm not sure", "It's too early to tell", "It's different for everyone". 

But life is about growth.  And I am learning to trust God with things I can't control.  Definitely, multiple sclerosis is one of those things.