Thursday, April 26, 2012

My First Date with Tysabri

Infusion without incident.  That’s how I would describe my first Tysabri treatment. It was not terribly exciting, kind of boring actually. My nervousness was more eventful then the actual infusion and its aftermath, or lack thereof.

We arrived to my appointment about 2-3 minutes late and had to wait for some time before entering the Infusion Room. As my sweetie and I sat, my stress and anxiety began to swell. Did we arrive too late? What if they won’t take me now? What if I have to reschedule this infusion? This will force me to reschedule all the subsequent appointments I already have booked because they must be every 28 days. It would be great not to have to go through this infusion because I am really nervous. But not nervous like I’m about to give a solo performance at a concert but I am still nervous. And, how is Tysabri pronounced anyway? I’ve heard it at least three different ways. TIE-SA-BREE, TEE-SAH-BREE, TE-SAY-BREE? TIE-SAY-BREE? TEE-SAY-BREE?

Christine Germans?!, a voice called out, interrupting my neurosis. Yes! We stood and grabbed our belongings which for me consisted of a 20-pound tote filled with my laptop, Kindle, notebook, power cords, cell phone, camera, wallet, papers. You know, the type of stuff one needs to pass the time during an infusion. First infusion?, asked Nurse Jackie (true story) as we walked towards the Infusion Room from the Waiting Room. Yes, I replied. As we entered through the Infusion Room doorway Nurse AJ handed me the Tysabri booklet. Read the pamphlet, she demanded but in a nice, nurturing yet this is a serious situation sort of way. Okay!
Read the pamphlet!
Nurse AJ and Nurse Jackie taking care of me

The Infusion Room was not very exciting. The décor consisted of a nurse’s station, about six or seven infusion lounge chairs and a bunch of IV stands. Not much else. I remember the floor was nice. Laminate wood flooring. Homey touch.

We walked over to my chair, my relaxing spot for the next two hours. Nurse Jackie instructed me to read the Please Don’t Sue Tysabri card while she gathered up the gear for my infusion. I hopped in the chair while Nurse AJ got me warm blankets and pillows. This will be very relaxing. Cozy, I thought, as I stretched out and cuddled up.

Lidacaine?, asked Nurse Jackie as she prepped my forearm for the IV.  Huh? What’s that?, I asked, absolutely clueless about IVs because I’ve never had one before except for outpatient surgery over 15 years ago. That was way too long ago and my MS brain erased that experience right out of my memory bank. Lidacaine, explained my sweetie and Nurse Jackie, is to numb the area to prep for inserting the IV needle. Hmmm. So, that would be two needles? I reasoned the pros and cons of an additional pinch on my skin and decided that if I could handle daily injections for nearly two years, I could handle a quick needle for the IV.  No. Let’s go for it.  Just one pinch please! And in went the needle…

Yikes. Okay. That hurt. But it was very short lived. By the time I registered the pain of the IV needle it was all over. I didn’t even get a chance to slow down my breathing and do some quick visualization exercises. Later I came to realize this was indeed the worst part of the infusion.

Nurse Jackie hung up a bag on the coat rack next to me and popped some tube into my IV. Is that it? Is that the Tysabri (te-SAY-bree)?, I asked, not wanting to miss the moment of first contact because we brought a video camera to capture everything. Saline first, she said, the pharmacist is mixing the Tysabri (tie-SA-bree) in the other room. While the saline dripped through, I chatted with my sweetie who sat right next to me. Eventually, Nurse Jackie placed the Tysabri package on the table next to me. It’s neon yellow! I observed quite loudly. No, that’s just the packaging Nurse Jackie informed me, giggling. How embarrassing. Sorry, it’s my first time. It looks like some kind of magic potion.
The magic potion

After a few moments, Nurse Jackie hung up the Tysabri bag on the IV rack and connected the tube to my IV. Tysabri (tie-SA-bree)? Do your magic, I said. I expected Tysabri to announce itself as it dripped through my veins. Here I come!, I imagined I’d hear. Yet I felt nothing so I tried to relax into it.

No such luck. I was still distracted as I waited to feel fire in my veins, pass out at some point along the way or maybe develop a headache but nothing. It was all very uneventful. Yet, the seriousness didn’t evade me when I looked up at the Tysabri bag. This is some crazy shit, I said out loud. Who could have imagined that I’d be sitting in an infusion room getting pumped with Tysabri because my initially prescribed MS drugs weren’t strong enough to deal with those stupid lesions?!?!

All this in the first five minutes. This is going to be a long two hours I thought to myself. 


Friday, April 6, 2012

My MS Haiku

vast cool open grey
its power envelops me
settle into calm

(c) 2012 Christie Germans

Tuesday, April 3, 2012

Subtract Negative for More Positive

“Every time you subtract negative from your life, you make room for more positive”.

I would love to say that I am the type of MSer who always focuses on the positive wearing rose colored glasses while holding the proverbial glass of water that is indeed half full. Yet, sometimes I have bad days and the negative seeps in and before I know it I am wearing very dark sunglasses while holding a completely empty glass of water.

Why? Well, first I am not positively perfect. I get cranky. I have bad days. Sometimes I am sad. Sometimes I am angry. Sometimes I am just not in the mood to see the bright side of things. Ever have these kinds of days? It happens. For me these days come up when I do not feel good, when those pesky lesions along my spinal cord cause me a little more grief.

During these moments, I grow resentment towards my MS and I find it difficult to sway towards the positive. I resent the fact that, sometimes, my MS keeps me from doing things that I want to do. When I feel my hand flares up with pins and needles, I do not feel like drawing. When my legs get super wonky, I do not feel like riding my bicycle. When my optic neuritis flares up, I just want to close my eyes. When I am fatigued, I simply do not want to do anything at all. I want to yell at my MS because of this. &%$! You MS! Luckily for me, these moments are usually short lived. It’s not my nature to be so angry and negative yet I do need reminders that it is okay once in awhile to feel these emotions.

How do I deal? Sometimes I simply bid ‘farewell’ to the day, go to sleep and wake up to a new day. I start over. I welcome the day with fresh eyes that allow me to see the negative that I can get rid of and this opens up my life to make a bit more room for the positive. Corny, I know. But for me it works.


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