Thursday, May 21, 2009

A Flare Up, Some Good News (Or So I'm Told), Some Confusion, And Traces Of Complaints...This Post Covers A Lot Of Ground!

I had my first real flare-up since starting the Tysabri infusions five months ago. It happened three weeks ago and, while I am grateful for only one flare-up in a whole five months, I have to say that this one was quite impressive in it's intensity.
I've had some pretty impressive flares during my life with MS (in my book anyway)(I cannot believe I'm bragging about how impressive my flares have been..ugh!) but this one took the cake.
For the first time, MS decided to screw with my eyesight. No, that's not right. This is the second time, the first being my Optic Neuritis.
Anywho, I woke up one morning and blindly shuffled from the bedroom to my chaise lounger in the living room and spent the next two hours waiting for my eyesight to stop being so annoyingly blurry.
Then I lost my peripheral vision. I then spent the rest of the day wandering around and bumping into things that had obviously moved from their normal places and doing a lot of cursing.
Lots and lots of cursing.
The next morning, I awoke and immediately opened my eyes to see if it had cleared up.
Peripheral Vision? Check!
Lack of blurriness? Check!
Huge, black, blind spot in the center of my vision? Uhmmm, not on the invite list.
And yet it was there, this black spot right in the middle of my line of site.
Basically, I could see up above me (you know, like when you're looking at a person's face and you can still see the ceiling?) and below me (same thing but BE low), my peripheral had come back but if I were looking at someones face, basically all I saw was hair, chest/shirt, right shoulder, left shoulder, nothing else beyond three feet of me.

I've been able to handle a lot of stuff in the past year that I never imagined I would have to deal with but when it starts messing with my eyesight, I kind of start to freak out a bit.
Then more symptoms, familiar symptoms started to show up throughout the next two days. Fatigue, foot drop, dizziness, total loss of balance, really need I go on?
Four days after that first blurry morning, my husband suggested we call my MS specialist in Georgetown. He ordered an MRI and penciled me into his schedule for the next day.

*Sigh...Another three hour drive to Georgetown.**

On the bright side, there was some good news that came from that visit. My new MRI showed that I hadn't grew any new lesions (When I was on Rebif, my brain turned into Miracle Gro) and that all but 3 of my 18 lesions appeared dormant.
"Good for YOU!" he shouted in his thick, Arab accent.
He was priding me like a kind parent to "that kid" (You know who that kid is, right? The one who is always picked last on teams and yet still goes home and says to his/her parents "I was chosen for a team as their last player and I almost touched the ball as I lay on the ground in a ball, shrieking "Get it away from me!" as it went whizzing by my head!" To which his/her parents would say "Oh, Good for you, honey" as they mentally say a prayer that this kid is a genius since sports aren't going to pay his/her way through college.
Not that I had anything to do with my brain not acquiring new lesions. If I had control over that then I wouldn't have let the existing ones set up shop!
The visit to Georgetown also included a suggestion in changing medication.
I know that most people don't talk about taking antidepressants for fear that others will think they're crazy, however, I am not one of those people.
I know that everyone has an opinion on the subject (Wanna Fight, Tom Cruise? I can assure you that I will not be "glib") and I would never dare to ask any of you with MS what you're taking or if you are taking an antidepressant. That's not to say I wouldn't want to hear it.
I had been on Effexor XR 150mgs everyday for a year. Actually, the day the doctor I was seeing then diagnosed me with MS he sent me home with that prescription and the one for Rebif.
But lately I have felt like it's stopped working.
So, I am now in the weaning down process, cutting my dosage in half every 10 days so that I can start a different medication in the hopes that it will work.
You can certainly tell when I've just cut the dosage back too! Talk about mood swings!
What I didn't expect was that weaning off of an antidepressant would cause insomnia.I wasn't expecting the weaning process to bring friends!
I have spent the last year and a half fighting fatigue and losing. I couldn't make myself stay awake.
Now I can't make myself go to sleep!
Oh the irony!
Counting today, I have gone 11 days without taking a nap and only being able to sleep three to four hours at night.
Yeah, it's fun.
You know, I remember saying to The Hubs a few years ago that it appeared that we had become an old boring couple. Nothing ever changed, nothing interesting or different happened.
We were stuck in a rut.
And now things certainly have changed, doctors find my brain interesting, and I'm afraid of something different happening everyday.
I think I miss that rut!

Tuesday, May 5, 2009

UN-Happy Anniversary To Me

Today is my "One Year Anniversary".
Exactly one year ago today, I had my life turned upside down by a diagnosis I didn't expect and an illness I will never understand.
I don't know if any of you have ever had this happen, but last week I was sitting in the waiting room of my neurologist's office, flipping through a magazine that was older than my youngest child, when I saw an article that asked:

"What Is Your Idea Of Bliss?"

Out of the blue, something happened that hasn't happened to me since I was 16 and had great plans of being a world known author, all of these things and ideas rushed to my head and I needed to write them down RIGHT NOW because they were things I didn't want to forget.
Bitten by the "Writing Bug".
I grabbed the little journal that I always carry with me, just in case and started writing.
And with this being an important day and all, I thought I would share what I wrote with you. I hope you enjoy it.
My Bliss

If you had asked me what my idea of "Bliss" was one year ago, I would have looked at you-
My hair falling out of my sloppy "Mom Bun", my faded shirt covered in baby drool and ketchup fingerprints, my jeans faded and extremely worn in- I would have replied, after a yawn from being up too late the night before with a sick child and awoken way too early by the other child, who is not sick and very full of energy- that my idea of Bliss would be:
"A day spent in a spa that has a never ending supply of chocolate. A day spent far away from the kids and their constant chaos, far from the responsibilities that come with life as a stay-at-home mother and a wife/homemaker to my husband.
Of course, I wasn't planning on TODAY.
I didn't expect a today where my world would be turned upside down by an illness and a disease I didn't understand.
I was diagnosed with MS and had to learn how to deal with being a "disabled person" and still being a mother/wife.
Now, my idea of Bliss would not only include the endless supply of chocolate, it would also include a day where I had the energy to take my kids to the park and climbs around on the jungle gym with them.
Bliss would be an evening where I felt well enough to go on a "date night" with my husband, where we would go to our favorite restaurant and order the Chocolate Brownie with Peanut Butter Ice Cream dessert.
Bliss would be not having to ever set foot inside a doctors office again or ever needing another medication for as long as I live.
Bliss would be being able to make plans with a friend and actually committing to them ahead of time because I don't have to worry about how I'm going to feel in a week.
Bliss would be having my daughter look at me with confidence and excitement because I told her that we were "going to go shopping and get mani/pedis on Saturday" instead of looking at me with apprehension and worry that I might not be able to see well enough to drive us or not have the energy to get out of bed at all.
My idea of Bliss is now to fight MS. A disease I am now well-educated on but still don't understand so that I can be a part of my life instead of being stuck in the bleachers as a spectator.
I want to live a full life.
A life that others wouldn't know the feeling of living unless they experienced it.
Bliss would be a life filled with laughter, love, and family.
Bliss would be a life filled with energy and adventure.
Bliss would be a day spent in a shirt covered in baby drool and ketchup stains.
Bliss would be a night spent being up too late taking care of a sick child and then waking too early by a child full of energy and excitement about living another day.
And, of course, Bliss would be a never ending supply of chocolate.