Don't Panic?

It was hard not to panic when I got my first bill for my Tysabri treatments. Any guesses on how much it costs, before insurance and the Active Access Co-Pay Program kicks in? I didn't sleep a wink that night, worrying about what would be covered and what would not be. I should have been wearing my "Don't Panic" button because now everything seems to be falling into place. Whew!

I Should Always Wear the Don't Panic Button

Gallop. Do you believe in magic?

Once you're in it, it's okay

I just finished Augusten Burroughs’ latest book, “This Is How: Proven Aid in Overcoming Shyness, Molestation, Fatness, Spinsterhood, Grief, Disease, Lushery, Decrepitude & More. For Young and Old Alike”. While I do not agree with his point of view on everything, one chapter in particular stuck with me, “How to Be Sick” and in that chapter, one passage hit home:

“Once you’re in it, it’s okay.”

Whoa.  Profound. How does Mr. Burroughs know this about me?

Is this true for you?

When I first was diagnosed, I suffered a lot with imagining how bad everything was undoubtedly going to get, allowing the anxiety to swell my brain yet when I finally reached that point, it never ended up being all that bad.  It was (and is) worse in my head.

Allow me to share. When the first pang of pain came on in my left eye and the colors got all whacked out, I thought my life, my visual and artsy life, was over. I manifested in my head that I would go completely blind in that eye or, at the very least, I would not be able to enjoy colors the way I “normally” did. I propelled my anxiety into even worse things and went bonkers thinking that I’d go completely blind in both eyes. I stressed that I would not be able to photograph or color or create or read or drive or watch the sunset or see my loved ones. Well, over a year later, I’m in it and it’s not at all what I feared. The optic neuritis never turned out to be as bad as I imagined. It was so much bigger in my head. While I have some compromised vision, it’s stable and manageable and not at all the utter dread I thought it would be.

I am now within my MS and it’s okay.

Three months ago I switched to a more aggressive treatment, ditching the daily injections of Copaxone for a monthly drip of the Big T. Tysabri. I remember my fears very clearly. I allowed the anxiety in my head to get massive. I imagined that the infusions would be excruciating. I never had an IV drip before so what did I know. In my head, I saw black and blue marks on my arm. I saw myself in pain with the insertion of the IV needle. I was convinced that I would suffer in such a major way that I would need sedatives to survive. Don’t get me started on what I imagined about the side effects. I built a horror story in my head.

I had my third infusion last week and it was another without incident. These infusions are so uneventful that I want to scratch my eyes out from boredom while I sit there for two hours. Not at all what I imagined so many weeks ago.

I am now within my MS and it’s okay.

Don’t get me wrong. I do realize the seriousness of my MS and am very aware of what may (or may not) happen to me and what symptoms I may still meet. But, as Burroughs describes in his book, I do not want to accept them in advance. And, I will try to not empower them. With this, I want to greet my new symptoms waiting to meet me. “Well, you’re new around here and I will adjust to you and then you will no longer be new but just familiar.” It won’t be long after that I say again...

I am now within my MS and it’s okay.

--

Is this true for you, this notion of building things up to be bigger in your head rather than how it turns out to be? I would love to hear your stories.

Hope you’re well.

C

Marlo Rocks!

Every time I read something written by Marlo Donato, I am reminded that she is indeed one of my MS heroes. She should have a cape, preferably one designed by Donna Karan.

She recently posted five reasons, one a day, Monday through Friday, on why companies should hire folks with multiple sclerosis. Her list is great! They range from cost effectiveness and time efficiency to delegating and sharing knowledge.

Cheers to some great articles! I, for one, appreciate the message of empowerment conveyed in each of these five posts. Thanks Marlo!

To read the articles, check out her blog here: http://marlodonato.tumblr.com/

Ciao for now.

Christie

Lobster Arms, Food Trailers and My New Theme Song

Greetings Earthlings.

I hope this post finds that you are all doing well out there on our lovely planet, wherever you may be, whatever you may be doing.  Me? I am doing super swell.  I'm on my way to Texas to congratulate my nephew on his graduation.  Very excited to spend time with the family. Yee-Haw!

Meanwhile, back in sunny San Diego, my life with MS continues.  I am getting on my bicycle as often as I can, whenever my abled body allows me. Love the wind in my hair, not loving the head winds that make the ride a complete struggle! Ugh. I need some rockets on my pedals.

Here’s what’s kept me entertained these last few weeks and things that are on my cluttered mind. Yes, I am entirely too lazy to write something longer so I choose to write in bullets. They are very effective in organizing my running-around-like-a-crazy-person scattered thoughts. Cheers to compartmentalization in the form of a bulleted list!

• Lobster Arms. This is what happens when you go for a bike ride and forget to put on sunblock. I look ridiculous and am now sporting a nice T-shirt tan. Yes!
•  The spinning hasn’t stopped and reminds me now of the song, “You Spin Me Round (Like a Record)”. I’ve declared this my new theme song to celebrate the vertigo. Round, round, round, round. I sang this the other day as I walked down an aisle at the office, dragging my hand along the gray felted cube walls to keep me on the straight and narrow all while hoping that none of my co-workers pass me so I don’t have to try my mightiest to convince someone that I have not had a morning cocktail. Round, round, round, round.
• Can’t wait to check out the Austin Food Trailers and meet up with fellow MSer McCall T. We are going to hang out and chat over some crepes. Oui! Oui!
• Another infusion without incident. I had my second dose of Tysabri last week and I’ve got nothing to report because nothing really happened. Well, except for the flow of the big T and that minor heart palpation. That’s pretty major I suppose.
• Old age or an MS symptom I really need to start stressing about? You tell me. Here’s what went down: I went out to dinner last weekend and ordered what I thought was a Cesar salad with shrimp. I said it out loud while reading the menu. Cesar salad with shrimp please. Our server was not on the same page.  She brought out this said salad with salmon. I never order salmon. Ever. My sweetie told me I ordered salmon. My parents told me I ordered salmon. Impossible. I swear it was shrimp. It was rather delicious but that’s beside the point. I ordered shrimp. And, of course whirls of thoughts enter my MS brain. What if I mix up my words all the time and I’m not aware of it? Doing this at work could be problematic. Seriously. I can see it now. “Sales are up 7%!” When in fact sales are down 7%...
• The heat and humidity of Texas is on my mind and I’m anxious about it. They have AC in Texas, right? My sister-in-law is getting misters for my nephews graduation party. Suh-weet. I shall relax in the midst of spraying water while guarding my hearing aids with the umbrella of my hands and sipping iced water no, let’s make that an iced vodka drink, through a straw because my hands will be busy protecting my hearing aids. As long as I stay cool, that is all that matters. Whatever it takes.
• Bam! That is the sound of me hitting a majorly big brick wall. Or, commonly known as MS fatigue. Totally knocked me out and I was confined to a full day of rest. Poo.

I hope you are more settled than me at the moment. How are y’all out there?  

Ciao for now from deep in the heart of Texas.

C

Hey San Diego!

My neuro is hosting a great seminar series on living with MS. I went to his first of the summer and it was great. He’s informative and funny which makes for a great presentation. If you live in the San Diego area, check out these upcoming seminars:

Multiple Sclerosis and Your Emotions

May 10, 2012 at 6:30PM

Multiple Sclerosis and Heat Management

June 14, 2012 at 6:30PM

Best,

Christie

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.

tie-SA-bree

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. 

C