Saturday, July 4, 2009

Holiday Memories And A Little Magic

"Freedom is nothing else but a chance to be better."
-Albert Camus

I've always tried to take my kids to see fireworks on the 4th.
But with last summer being my first with MS, and it being the hottest summer in existence (atleast to me) we didn't make it and I can't tell you how sad I was to miss it.
When I was a little girl, my parents would always take me to the next town over to the festivities at this huge park. They had carnival rides, food vendors, and an orchestra that would play patriotic music while you waited for it to get dark enough for the fireworks to start.
I always knew it was time when my mom would lay out my favorite old quilt on the grass and my father would say "Ok boogitt (that was his nickname for me because I loved to dance or "boogie", if you will) it's time to get ready." Then he and I would lay down on the quilt and stare up at the sky.
When the fireworks started, it looked like they were bursting right over our heads. My favorites were the ones that had the little sparkles that would rain down and they always looked like they were going to land right on us.
Two years ago, the summer before my diagnosis, I took my monkeys to my hometown for the holiday and we went to the same park and, when it came time for the fireworks to start, I remembered what I used to do with my dad and I decided to do the same thing with my kids.
They didn't understand what we were doing until the first firework burst in the sky and it looked like it was sparking right above our heads, just for us. After two or three fireworks had gone off, the oldest monkey turned her head towards me (but still keeping her eyes on the sky, just in case) and whispered "Momma! I had no idea you could do magic!!"
I didn't know if they would remember that night, that would probably seem so long ago in "kid years" but, this morning, when I told them we were going to go see fireworks, both girls got so excited and the center monkey said to me "Can you do that thing with the magic again, momma? Please?!?!?" I can't even put into words how happy it made me that they remembered that night the way I do.
I hope all of you enjoy your holiday in any way you can.
I just have one request.
No matter what you do today, stay safe, take care of yourselves, and don't forget to add a little magic.
Happy 4th of July!

Thursday, July 2, 2009

I Guess It's Been A While....

It seems a little funny to me that I started this blog as a form of therapy to help me deal with my journey down the winding road of MS, and yet, when it gets rough the last thing I feel like doing is writing about it.

I've made some decisions over the last few months that I feel were the best for me.
First of all, I decided to stop taking the antidepressant that I was put on the same day I was diagnosed.
I was taking Effexor XR 75 mgs, two a day, which adds up to 150 mgs.
Now, I'm not going to bash antidepressants because, honestly, I don't know how I would have made it through the first six months, hell even the first year, after my diagnosis without them. They made me numb and during those times, numbness was very welcome.
After I hit my year mark, even though I was feeling better physically at times, mentally I was in a very negative place. Pessimism has never really been my thing, you know?
But more than that, even though I wasn't "depressed", I also noticed that I wasn't anything else either. I was never happy or excited, I didn't look forward to things the way I used to. I was just here, a body on the floor, going through the motions but never truly experiencing any of it.
I couldn't make decisions for myself, even about simple things like what to make for dinner. I would stand in front of the freezer, door open, staring blankly at nothing and then I always ended up texting The Hubs to ask him what he wanted for dinner.
I decided that it was time for me to see how I was without the anti's.
I honestly felt like I was wandering into something unknown. I didn't know myself with MS without the numbness.
I wish I had taken a picture of The Hubs' and my MS specialist's faces when I told them at one of my appointments that I was going to quit taking the Effexor. My specialist said "Oh, it's not working? I'll write you a script for something better then."
Then I sprung it on them.."No they aren't working but, for now, my plan is to wean off of the Effexor and then see how I am without antidepressants."
{SILENCE}This picture is almost perfect because this is basically the expression on both of their faces.
They both tried to talk me out of it but, for the first time in over a year, I had made a decision and I was sticking with it. The ironic thing, atleast to me, is that they feel they should watch me like a ticking bomb now since I've stopped them. I didn't say it but I thought "You should have been watching before, when I was still on them." But I didn't think it was neccessary to draw unwanted attention to myself.
I started weaning myself off of them, hoping that if I did it slowly I wouldn't go through withdrawal from them. It didn't work and the withdrawal was awful!
For two and a half weeks I couldn't keep any food down, I was in the most intense pain that went throughout my entire body, and I didn't have the energy to do anything. I also lost 22 pounds in those two and a half weeks. That was rough.
But I stayed strong and kept myself focussed on the end goal: I wanted to have feelings again. I wanted to see if any of my old self still existed inside of my body.
And eight days in, I knew it was going to be worth it.
I was getting the girls ready for school one morning and the oldest monkey did something goofy and it made me laugh. Both of them stopped what they were doing and stared at me like I had grown horns. When I asked them what was wrong, the oldest monkey replied "You haven't laughed like that in a long time!" and the center monkey followed up with "That was a real laugh, not like when you're doing a fake laugh just to make us happy!"
I didn't know what to say but my mind went insane. I started thinking things like "I thought I was doing great at playing the role of a real person but they knew anyway. What have I been giving them all this time?"
And now, six weeks free of them, I feel better than I have in a long, long time.
That's not to say I haven't had my bad moments but, honestly, who doesn't have them? They're a part of life, whether we like it or not, right?
Honestly, I'll gladly welcome those bad moments if it means that they will be followed up by some really great ones too.
And, on the brighter side, I've found that some of the "Original Me" is still in here and she's been dying to get out.
Go figure....

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.

Thursday, April 23, 2009

I'm A Little PO'd So I'm Gonna Rant And Rave And Try Not To Use Any Cuss Words So That I Don't Offend Anyone!

**Image borrowed with love from CartoonStock **
I'm sure I can't be the only one who is having these problems.

There have to be others of you out there, fighting back the anger, tears, curses, screams of agony.

You might be afraid to come out of the shadows and talk about it, and I understand why you would choose to hide.

I'm talking about dealing with the Bermuda Triangle of Medicine:

1. Getting past the office staff to see or speak to the doctor.

2. Getting the doctor to agree to write you a script for the medication needed and for the amount needed.

3. Getting your insurance and your mail order pharmacy or retail pharmacy (I don't judge) to actually fill the frippin script in a timely matter, without confusion, mistakes, or having to call them everyday to speak to someone different everytime, which means you have to retell your story again and again and again, only to have the person tell you that they have solved all of your problems and also fixed world hunger on top of it.

Then you wait. And you wait and you wait and you wait.

After a few days of waiting with no reward at the end, you call again, only to find out that your script is not, in fact, in the mail as the previous fourty million people had told you, but this new person is going to solve all of your problems and end the war.
I feel like I am fighting the biggest battle of my life here. It's not the MS monster, it's not bullies at my childrens schools, it's not the economy, it's none of the things that should be a battle for me.
I am fighting my insurance and my mail order pharmacy because, even though I have been diagnosed for almost a year now, they still don't see the need in some of my MS medications. And I'm starting to get to a point where I don't see the need in having to explain why I need these medications to every Tom, Dick, and Shrilankitalutaria in India.
I understand that medications, such as Provigil, are outrageously expensive and, if I were the insurance company, I probably would want verification before I dispensed them to everyone and their brother too.
But I've done all of that. I have verificated until I thought my head was going to explode.
Yet, every time I call to order my refill, the battle begins again.
Maybe it's because the insurance companies know that people with MS tire out easily, especially if you don't send them their Provigil, and they're hoping that we'll just get so tired of fighting that we'll stop.
Little do they know that, while I may be exhausted, I am also extremeley stubborn.
I also hate to lose.
And I like to to have the last word, even if it's in a language I don't understand, I'm still crafty enough to make something up.
Don't get me wrong, I know how lucky I am to actually have insurance and that they do, eventually, cover my meds. I know people who do not have insurance and are now fighting "The Man" to pay for their meds.
I'd rather fight with someone in India whom I can't understand than fight with "The Man".
My point to all of this is.........what was my point?
Oh, right! Now I remember.
My point is, why do we all have to fight?
Why is every step a battle to win or lose?
And why is Provigil so freakin expensive?????
I guess my problem is this: Everyday I have an "Ahhh-Haaa!" moment where I realize that my MS is here for the rest of my life. I don't know if those moments will wear off in a few years, when all of this isn't still new to me, but I have been diagnosed with MS for almost a year now and I'm still having those moments.
It may come after a fall or on a day when I'm in a tremendous amount of pain. Other days it might show up when I'm walking around in circles because my memory is so bad that I can't remember anything that I needed to do.
Maybe it's the moment that I have to tell my daughter that I can't go with her as a chaperone on her field trip this year, even though I've gone every year before, because I can't walk as much and I can barely keep track of myself, nevermind five children that are not mine.
The look on her face and the tone of her voice when she said "It's ok mom, I understand." is an "Ahh-Haaaa" moment that hits you like a slap to the face.
But now I find myself wondering if living with MS for the rest of my life also includes fighting with my insurance company and my mail order pharmacy for the rest of my life as well?
I'm willing to go into battle for a lot of things: my husband who didn't plan on taking care of me at 30 when he married me at 20, my kids who don't deserve to have a disease come in and take their mother away, and even for myself because I once was, still am, a person who was involved with my childrens lives, who loved to laugh, who kept having ideas for books she was going to write, who loved to read romance novels constantly. All of those are worthy reasons to go into battle.
I just don't know if I'm up for battling the Bermuda Triangle Of Medicine.
How many of you out there have the same problems?
Please tell me that I'm not alone in this!

Tuesday, April 14, 2009

I Would Like To Know Who The Wise Man/Woman Was That Said That Quote So That I Can Find Them And Punch Them In The Forehead

I've had a rough couple of weeks.
What's funny about that statement, though, is that they were also pretty wonderful too.
Contradicting, I know.
But I've been told many times, by different people, that I tend to be a "Walking Contradiction" so I'm basically just sticking to form.
The wonderful part was that my mother-in-law, whom I've spoken about on here before, left today after a 12 day visit.
And even though we didn't plan it to happen this way, her visit happened during the same time that my two oldest monkeys were out of school for Spring Break.
I don't know if it's because I'm a stay-at-home mother and I don't have to conform to a 9-5 job schedule, but dates, times, and even days of the week just slip past me without my knowing it.
I knew that Mary Jane was planning a visit sometime in April but I could never remember the dates and, for some reason, I guess I thought that April was six week long.
So, when she called last Monday to give me her flight schedule so that I could set up a car service to pick her up at the airport and bring her to our house, my reply to her was "Oh yes, I'll get all of that taken care of. I have plenty of time to take care of all of that."
To which she replied "Well, I suppose so if you consider from Monday to Thursday being plenty of time".
That's when the old brain motors started firing up (and I do believe smoke started coming out of my ears from my brain not having to function in a while) and I said "Wait a second...You mean this Thursday? As in: Today is Monday, then there's Tuesday, Wednesday, and then you're coming Thursday?"
The good news is, she's been going to MS support group meetings and so she knows that I'm not an idiot. She said "Yes, that's the Thursday I'm talking about."
She arrived on that Thursday, the last day of school for the monkeys before Spring break started, and stayed 12 days and left today, the day the monkeys went back to school.
How amazing was that for not planning?
While she was here, she did so many of the things that have been on my "To Do" list for months now and so much more. She cooked amazing food and even made extra so that we have ready meals in the freezer, she painted the girl monkey's future bedroom (I had been planning to do that for two months and could never get enough energy worked up to do it), she drove me to doctors appointments and shopping spots, which was wonderful as my eyesight has been a bit blurry lately, kept the monkeys in line, and most of all was just here.
Just her being here was such a tremendous comfort to me. I spend most of my days holed up in the house, most of the time not even getting out of my pj's until it's time to put on clean ones, and having conversations with a 3 year old boy monkey, who I'm pretty sure doesn't listen to me. I think he must get that from his father.
The bad part was that I felt like poo the entire time.
In fact, I've felt like poo for the past three weeks and nothing seems to be making it better.
My fatigue is worse than ever, I have severe pain in my neck, lower back, hips, and legs, and have a constant headache. To top that off, I'm falling down frequently. I'm kind of starting to feel like a bowling pin being constantly knocked down by an enormous, invisible bowling ball.
I've alway had a problem asking others for help.
I don't know if I'm afraid of being told "no" or looking weak or lazy, but asking for help has just never been something that I've ever been good at.
That's why having Mary Jane here is so great.
She doesn't wait for you to ask. She just does.
No questions asked, no accusations of laziness or weakness, and there are no strings attached.
Another great thing about having her here is that she makes me do things that I've been avoiding. I call it "procrastination" or "waiting for just the right moment". Both she and The Hubs call it "avoidence".
Potato, potaaaato I say.
And before I knew it, 12 days had flown by like the blink of an eye and I woke up this morning and sat with her while we waited for the car service to come and pick her up and take her back to the airport to go back to her land of sunshine and warmth.
Appropriately, it's rained here all day. Even Mother Nature is matching my mood.
And so, now I'm back to sitting around in my pj's all day, watching countless hours of cartoons, and having conversations on a 3 year old level to a WeeBoy Monkey who probably isn't listening.
But such is life.
As one wise person (I'm sure they had to be wise) once said
"All Good Things Must Come To An End."
That has never been more true for me than today.
Thanks for being here Mary Jane. You truly are a wonderful, amazing person who always seems to show up right when I need you most.

Thursday, April 2, 2009

The Picture

I tried my best to get a decent picture of the one I described in the post I wrote this morning.
I don't know why but every time I try to add it to the post from this morning, the video from YouTube won't work.
Ahhh, just one of the joys of blogging when you don't really know how to use a computer.
So, here's the picture that I talked about in my previous post. Please read the other post to get the story.

I had to call my mom to find out what year this was taken.

This picture waas in the National Geographic in July 1954. My mom is the little girl in the red sweater. Everyone who sees this picture hanging on my wall always asks if these people just showed up to pose for this picture and are always amazed to find out that this was the atmosphere of the store everyday, not just for the picture.

Hope you all like it.