MS, PML and other fun acronyms

Well, the time has come to make a decision. A very important decision. Perhaps, a life and death decision. I have been living with Multiple Sclerosis for 16 years and I would have to say that it has, overall, been a pretty easy journey. I have always been happy, if not thankful, that God chose this cross for me to bear. There are a lot worse things than having MS. Don't think for one minute that I don't know that.

Over the years, I have tried all kinds of treatments and drugs to combat the devastating effects of this (lovely) disease! In the very beginning, I chose positive mental attitude (PMA) and prayer (otherwise known as OYK - or "on your knees"). That was followed up with a dose of better eating, lots of exercise and a bottle of bleach. It was great: I lost weight, I embraced my "inner blonde", I felt like a million bucks! I truly felt like MS had been a wake up call to live a better life! The life that God had intended me to live! Apparently, God thought I looked better as a blonde too!

A few years later, I started experiencing some numbness and balance issues. My doctor wanted me to consider Avonex, an intramuscular injection self-administered once a week. The only caveat was that they don't recommend getting pregnant while on this drug. My husband and I discussed it and decided that we should try for Baby #2. We'd give ourselves 6 months and if I wasn't pregnant by summer's end, we would close that door for good and I would begin my new treatment. Well, as luck would have it (just kidding, I know it was all God!) we were pregnant by Memorial Day! We were thrilled! AJ was going to have a little sister and our lil' party of three was about to become a foursome!

Marlee was born in January and just a few weeks after she was born, I began having exacerbations which would cause me to lose my balance more easily and my limbs to go numb. I remember being thankful that I was in a season of my life where I was almost always sitting on the couch (nursing) or pushing a stroller or grocery cart so, that I could sort of "fake" it if I needed to! But, I knew I needed to get started on my treatment ASAP! I knew that this meant I needed to wean my baby sooner than I had planned and get serious about fighting this fight. (Studies show that the sooner a person with MS starts treatment, the better their prognosis.) It was a tough decision but, time was not on my side and I had to act fast!

For several years, I was happy with the Avonex. Thankful, again that there was a miracle drug on the market and even more thankful for a husband that wasn't afraid to administer it! He will always be my hero for rising to that occasion. Our wedding vows had said "in sickness and in health" and clearly, he had meant every word.

But, like all good things, it came to an end...an MRI showed new lesions in my brain and my doctor wanted me to "amp it up" where my treatment was concerned. So, we switched to Rebif, another shot type drug but this time, instead of intramuscular, it was subcutaneous (which meant just below the skin) and was to be administered not once but, 3x a week. Oh joy!

Rebif worked for quite awhile, probably 5 or so years. But, in early 2011, I started experiencing dizziness and vertigo, rendering me unable to work and drive, limiting my daily functioning greatly. Again, my doctor ordered an MRI, got me started on multiple days of steroid infusions and started talking to me about this new drug called Tysabri. Tysabri was a once a month IV infusion that had seen great successes but, unfortunately had also seen unfortunate outcomes. Several people on the drug had died from a rare brain infection called PML or progressive multifocal leukoencephalopathy! Phew! Aren't you glad they just call it PML for short?! Anyhoo, the idea of a once a month IV (or as I like to call it "a mommy time out") sounded fabulous! No more shots! No real side effects to speak of, well other than the possibility of that "PM-whatever it was" so, I jumped on that train faster than a sneeze through a screen door!

So, I have been living happily ever after on Tysabri ever since!

...

If only that was the end of the story.

A few weeks ago, my doctor ordered a few routine blood tests and another MRI. The MRI, thankfully, came back very good - no new lesions! Yay me! However, they also tested me for the antibody that causes the JC Virus, which is a major player in this whole PML Russian Roulette game! And, I tested positive.

So, back to that decision that I have to make. My doctor wants me to consider going off of Tysabri and try a new oral pill (taken twice daily) but, I'm not so keen about the side effects or the stuff that is in the pill. It is made from a chemical that has been used in furniture cleaner! What?

I, on the other hand, am not so ready to jump off the Tysabri Wagon just yet. I actually look forward to my monthly infusions as it is seriously one of the rare times in my busy life that I get to recline in a chair, cover up with a cozy blanket and either close my eyes or do a crossword, read or just chill for 2 hours! It's about the closest thing to a spa day that I get on a regular basis!

Besides that, here is what I do know:

I know that testing positive for the JC Virus puts me at a much higher risk for developing PML (1 in 500 I am told) but, I also know that there are other MS patients who continue to take this drug even after receiving a positive result.  I also know that I feel 100% better since I've been taking Tysabri than I ever have while living with MS. I know that life is unpredictable in and of itself and I am willing to take my chances. I know that the God that I believe in already knows how my life on earth will end, and if PML is part of His plan, then so be it. I know for sure that I would rather live a more quality life right now than to have a life where I wasn't able to enjoy the things I enjoy doing. It's about living in the NOW. Yes, I am worried about the possibility of developing PML but, what scares me more is picturing my life without the strength in my legs to run a 5k or the vision to see things clearly and be able to do the work I love. Tysabri has given me a new lease on life and it would be awfully ironic if the very thing that saved me, ends up killing me. But, then again, God works in mysterious ways and who am I to second guess Him?

*on a side note, I love the book Jesus Calling so much that I have it programmed into my phone under the acronym JC so, every time  I typed in those two letter that is what popped up! Kinda funny! I just hope it doesn't mean "Jesus is Calling me home!" Not just yet anyway!

Vitamin D, Tysabri and Running...Rx's for my MS



I just read a very inspiring article on runnersworld.com about a 35 year old man who started running and changed his life. This article resonated with me for several reasons but, mostly because he has MS and started running as a way to lose weight and stay fit for his kids. It got me thinking that more neurologists should recommend Running as a remedy for MS.

I am a big proponent of Vitamin D. I know it can do wonders for people, especially those with MS. I am also a big fan of treatment. Tysabri is my treatment of choice at the moment and I could not be happier with it. I also try and get my daily dose of crossword puzzles because I know it keeps my mind sharp. But, out of everything I've tried, nothing has helped me more than a little ol' drug they call Running.

I started running almost 3 years ago and I cannot emphasize enough what a difference it has made. Not only with my MS but, with my overall health, happiness and well-being. I always joke that if I didn't run, I would surely be in the Nuthouse by now! My daughter said to me recently, "Mom, if you didn't do so many races, we'd have enough money to go on an expensive vacation." I replied, "Ummm, honey, if I didn't run so much, I would be spending ALL of our money on therapy and would be in no condition to even go on vacation." I think she caught my drift!

Now, I realize running is not for everyone. I do know that I am extremely blessed to be able to run. I know there are lots of folks with MS (or not) who cannot run, let alone walk and my heart goes out to them. I have always adhered to the mantra, "Use it or Lose it" because I know there may come a day when I can no longer lace up my shoes and just go for a run. But, for now, since I've learned to run and while I'm able to run, I will. I don't want to look back someday and say, "Man, I wish I'd run while I had the chance."

I know doctor's need to promote their own profession by pushing pharmaceuticals and all, but really the answer is pretty simple: Get moving. Doesn't matter how fast you are. Heck, doesn't even matter if you are walking, rolling or scooting, just as long as you are moving. For me, it is running. For someone else, it may be walking to the mailbox everyday. But, find that thing that makes YOU feel alive and DO IT!

MS Doesn't mean "No Mas"!!

Recently, I have been doing my best to just forget that I have MS. Training for and running my second half marathon (last weekend) makes me feel rather "studly" and makes me feel strong and invincible! I usually don't even think about having MS until my monthly IV. And, then, I'm like "Wait a minute, Why am I sitting in this chair with a needle in my arm? Oh yeah, I have MS!" I sit there for a couple hours and then I walk out the door and go on with my life.

MS is a funny thing. I have heard it referred to as the "But you look so good" disease! Which is a blessing and a curse. It is a blessing because to the outside world, I look normal. I can walk, run, jump and do pretty much anything any of my friends can do...Okay, let's be honest, I often do MORE than any of my friends in a given day. On the other hand, though, it can be a curse because no one really knows just how much it sucks! As much as people try to empathize, unless they've been in my shoes, they just don't know. They don't know the fear that I know. The fear of uncertainty...wondering if I'll end up in a wheelchair someday, wondering if my children will get this disease, or wondering how long I will feel this good. Come to think of it, those are things we all worry about, MS or not, right?

 I consider myself very lucky because at the moment, I don't really have any glaring symptoms (thanks to my medication!) and I feel pretty normal. But, there are times that I'll be laying in bed and cannot feel my lower legs and feet. When I wake up in the morning, it is a bit hard to get my bearings. I stagger to the bathroom...a little unsteady on my feet. There are times when I forget things...mostly short-term stuff, like "why did I walk in this room?" or "what in the hell was I looking for just now?" Then, there are those times when I will be searching frantically for my expensive sunglasses, only to have someone (usually a small child) say, "Aren't those them on your head?" I truly don't know if I can blame MS for all of these mishaps or if some of it is just the natural progression of age. I imagine that it's a little of both.

I guess what I'm trying to get across is that even though I have MS, it does not dictate how I live my life. Life is uncertain for all of us. No one knows what tomorrow will bring. I don't use it as an excuse to not try new things or push myself beyond my limitations...rather, I use it as motivation to go further. I run because I know that someday, my legs may not be as strong and capable as they are today. I do crosswords everyday because I know that someday, my mind may not be as clear as it is today. I try to greet each day with excitement because I know what it's like to want to crawl back under the covers and hide from the world...when it hurts just to get out of bed. I am thankful that God has given me another day, a day that I feel good. MS has been such a gift - a reminder that life is fragile and that everything can change in the blink of an eye. A reminder that none of us is guaranteed tomorrow and we have no right to take a single moment for granted. A reminder to seize the day!

So, just for today, I am going to forget that I have MS. One day at a time, baby. One day at a time.

Taking a break from my busy day to get a stinkin'  IV! And yes, I am rockin' a pair of cowboy boots with my sundress!!



40 days til a new year...

It dawned on me today that 2012 is right around the corner!! 40 days to be exact. I need to get busy on my New Year's resolutions!! Last year, my goal for the year was to run a race each month...and I've accomplished it so far!! I've still got the "I Like Pie" 5k on Thankgsiving and the "Jingle Bell Run" in early December, but God willing, it will happen!!

I want to do something bigger and better for 2012. Here's what I'm thinking:

• 12 Races in 2012
• 12 miles a week
• Run a race on 12/12/12 

How does that sound? I like the idea of having some goals in mind and it's fun to play with the "12" theme! I figure if I put it down on paper for all to see, it makes me more accountable!! And, Lord knows, I need accountability in my life!!

As 2011 comes to a close, I reflect on my life this past year. A year ago today, I had never run a 5k...now, I've got 10 under my belt, plus 3 10ks and a half marathon!! Wow! What a difference a year makes. I have to say that I am a happier, more grounded, content person than I was before I started running. Running gives me the energy I need to get through the day. It gives me the confidence I need to deal with life's little challenges (I always think, "I can do this, I ran for over 2 hours straight"). It truly has given me a new lease on life and has made my MS symptoms all but disappear...well, that and a little help from Tysabri!!

I hope each and every one of you finds that thing that makes you tick, that thing that makes you leap out of bed with excitement each morning, that thing that makes you feel like I am ENOUGH and I am worth investing in. Go out there and find it - Time's a wastin'!!

Tysabri, Take Me Away!

Is it sad that I actually look forward to my monthly IV drug infusion for my MS? I sort of look at it like I would a day at the spa! I bring my little bag of goodies: magazines, book, reading glasses, crosswords...and just sit back in the recliner and RELAX...for 2 hours...without kids!! Man, if that's not livin' I don't know what is!! If I want, I ask for a blankie and take a little snooze...I can ask the nurse to turn on the TV...I can ask for one of those yummy candies they keep in a jar at the front desk...It really is HEAVEN! The only thing missing is a plush white robe and a big jar of cucumber water...but, hey, I can't get picky now!

I am now on month 5 of a new drug, called Tysabri. It is a once a month IV-infused drug...the actual drug itself takes about an hour and then, they have to sit and watch me for an hour afterwards. Not really sure what they are looking for...maybe for my eyes to roll back in my head or for my head to actually explode...but, I humor them and wait as long as they need me to wait. Hey, I am in no hurry to get home and fix dinner! (I score major sympathy points from my family when I walk in the front door at 6pm with a bandage wrapped around my arm - you can bet I am going to MILK this for as long as I can!!)

All kidding aside, there is a very rare brain infection that can occur with this drug...which has been fatal for some. This is VERY RARE though and the chances of it happening to me are next to nill. The way I look at it is like this: "Life is short, you could walk outside right now and get run over by a car...and be dead...so, with everything in life, there are risks. And, the way that this drug makes me feel is worth every second of worry over getting this rare brain infection." When I tell people I have MS, sometimes they look all worried and say "Is it fatal?" I tell them, "Life is fatal...none of us are getting out of here alive!" That usually stops them in their tracks or atleast gets them to buy me a beer!!

I love life...and I want my quality of life to be as good as it can for as long as it can!! Right now, Tysabri is working for me. Since starting on this drug, I have had no MS symptoms or side effects whatsoever so, for me, this is about as good as it gets!! I thank God that I am able to go in once a month for this wonder drug! It may not be a day at the spa, but it comes damn close!!