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!
...
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!
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