Living Life With Sarcasm, Kids, and MS

Holiday Memories And A Little Magic

2009-07-04T06:45:00.000-07:00

"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!

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

2009-07-02T06:22:00.000-07:00

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....

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

2009-05-21T19:09:00.000-07:00

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!

UN-Happy Anniversary To Me

2009-05-05T19:41:00.000-07:00

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.

-Tracy

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!

2009-04-23T06:29:00.000-07:00

**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!

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

2009-04-14T15:32:00.000-07:00

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.

The Picture

2009-04-02T09:19:00.000-07:00

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.

It Hasn't Taken All Of My Memories Away....

2009-04-02T04:55:00.001-07:00

I'm sure that, unless you were a big fan of country music in 1985, you might not know the song I've posted the video for. This song was performed by Dan Seals and I haven't heard it in years but, today when I was reading the headlines on AOL this morning, I saw that Dan Seals passed away at the young age of 61 on March 25th, 2009.
It took me a few minutes before I recognized his name and then I couldn't remember why I remembered him so I searched YouTube for some of his videos and when I saw the title to this song, I instantly remembered who he was and why I remembered him.
In 1985, when this song came out, I was 7 years old. I was the baby of the family out of my cousins, so while they were off doing what teenagers do, I was going to my grandparents house in a very rural part of southern West Virginia with my mom during the summers.
Their house was the greatest place on earth to me as a child. My grandparents, Emma and Clyde lived in the same house that they built together so many years ago, and if you went upstairs to my mom and her sisters old bedroom or to my uncles old room, and opened a closet, you would still find things like their old prom gowns and clothes that were no longer in fashion. There were also countless boxes of photos of people long gone and a box of notes that my mom and aunt had written to each other when they weren't speaking over something. Grandma kept everything.
My grandparents had opened a country store together that sat in front of their house. Back in the "old days", long before I was a shimmer in the sky, my grandparents worked together every day in that store. My grandfather was a postmaster and ran the end of the building that was designated as the post office and pumped gas when a car pulled up to the tanks and ran over a rubber wire that made a bell go off inside the store.
Grandma ran the register at the store and a person could stop by and fill their tank with gas, buy new overalls and workboots, order parts for their tractor or a box of peeps that they would raise for eggs and meat and a few times, people would even order hunting dogs that would arrive in the mail. They would also get their groceries, in bulk of course because it was a long trip from their "hollow" to the store, and they always made sure to catch up on the local gossip before heading home.
In the center of the store was an old gas stove for heat and surrounding it were five or six chairs that were always filled with people who would sit and talk to hear the gossip in comfort.
The National Geographic even came out in the early 50's to do a story on Grandpa's post office. He had an employee that still delivered mail on horsback, the last one in the country to do so and the magazine had sent a repoter and a photographer out to do a story on it. But when the photographer got there to take pictures of the mail carrier on his horse, they fell in love with the atmosphere of the store. I'm sure someone from the city had never heard of going to a store like this and, long after their shopping was finished, the shoppers still could be found sitting in the chairs around the stove, even if it were summer time and the stove wasn't even on, chatting and laughing over the latest news. So, along with the photos of my grandfather's post office and his horseback mail carrier, there was also a picture of the people sitting around the stove talking. My mom is in that picture as a wise girl of probably all of six or seven years old. I was lucky enough to recieve a copy of this picture, blown up and framed, from my mother and it now hangs on my wall. I also have a copy of the National Geographic too. Not many people can say that their mother was in a National Geographic, after all. Of course, I then always have to go on to explain that she wasn't one of those women with the disc in her mouth and the rings around her neck, with no shirt on, and her boobs hanging out.
By the time I came around, my grandparents had retired and sold the store to a distant cousin and her husband who had it still going strong. I remember times, probably when I was getting a little too wild, someone would give me a dollar and send me down to the store to get myself a pop (soda for you city folk) and a candy bar. Back then, a dollar bought both and you still had change left over for a few pieces of bubble gum.
I can still remember being excited, almost giddy, when we were on our way to my grandparents house. Even though it was rural, it was the greatest place on earth to me as a kid. I can remember the smell of the hot country air and the way the door creaked when you went inside the house. I remember the smells inside of the house too. Scents of grandma's cooking, usually something that she and grandpa had grown in their garden, the "squeak-squeak" sound that grandpa's chair made when he rocked in it. The tick-tock and then the chiming on the hour of the Grandfather Clock in the corner. And the always constant, soft sounds of country music playing on a radio somewhere in the house.
That was how I first heard this song. I remember that my favorite part of this song was the way Dan Seals could make his voice go up so high on some notes. I had no idea what the song meant but I loved it.
I also remember the time that we all piled into my grandparents Ford LTD, which was a boat of a car, and drove for what seemed like eternity into the closest "town" which, if I remember correctly, didn't consist of more than a small grocery store, a drug store, a funeral home, and maybe a stoplight.
On one of these trips, Grandpa and I were wandering around the drug store, while my mom and grandmother were shopping for things that didn't interest an older man and a young girl, when grandpa happened upon a cassette tape of the Dan Seals album that this song was on. When we got back to their house, grandpa surprised me with this cassette tape. I was so excited, as this was my first real music cassette. I played this song over and over until the tape just wore out. And even after it quit working, I kept it and I still have it, safely stored away in one of my many boxes of memories. I guess I inherited the trait of keeping everything from my grandmother.
My grandparents are both gone now and even though I always think of them everyday, when I heard this song this morning I was instantly taken back to that time when grandpa presented me with this cassette tape. It's amazing to me the things a song can do.
I have spent so many days angry at my MS and the fact that it robs me of my memory everyday. There are days that I couldn't tell you at noon what I had for breakfast. But this morning, hearing this song, I realized that there are some things, some memories, that my MS cannot rob me of.
I miss those times so much it makes me ache at times, but atleast now I realize that I can take comfort in the fact that MS can't steal these memories from me because they were long etched in my brainlong before MS and it's lesions showed up.
I hope you enjoyed this walk down "Memory Lane" with me. And even if you're not a fan of country music, give the video a try and listen to it. The song really is beautiful and Dan's voice and his ability to hit those high notes are what made it so memorable back then and still today.
RIP Dan Seals. Thanks for the memories.

I Found A Little Something

2009-03-25T06:23:00.001-07:00

When I first started this blog, I got two huge welcomes: one from Lisa at Brass and Ivory and another from Braincheese. I can't tell you how much I appreciated both.

But I do remember that Braincheese welcomed me onto the "Shortbus" so when I found this today, I found it fitting to show all of you and I'm also going to put it in my sidebar. I would love it if you feel free to do so on your own blog.

Because we really do have all the special people!

I'm Not Ashamed To Admit When I'm Wrong

2009-03-22T11:04:00.001-07:00

If you read my previous post, you know that I sang the praises for Montel Williams going on Oprah and telling his story about his battle with MS.
I guess I should have actually watched the show before I started my singing.
One of my favorite bloggers is Bald Ben at Did You Know Montel Williams Has That? He writes with humor, honesty, and he has a way of opening my eyes to things I would not have seen before. I admire him for writing and sharing his feelings and opinions in a way without sounding bitter or like he's giving up his "manhood" to do so.
After writing my post, I read Ben's comment and found that he disagreed with my take on Montel's appearence on Oprah. He, too, wrote a post about it but it went in a much different direction than mine. His post was also a bit more informed than mine as he actually watched the show and I wrote after reading the recap on Oprah's website and from other peoples opinions who watched it.
Montel had a great opportunity to tell all of Oprah's viewers the hardships that we have to deal with on a day to day basis while living our lives with MS. Instead, he failed. He was there to sell his book afterall.
The video I'm posting with this post is one from a cartoon called Chowder that my kids love and the pepper spray bit is one that my middle child used to act out for us millions of times a day for months.
But, somehow, I feel that it's fitting for me to use for this.
Chowder thought pepper spray would be delicious until he learned the horrible truth.
I thought Montel would shine a light on real life when you're living with MS. But, in the words of the ever wise Chowder, "I was wrong, I was horribly wrong!"

Sometimes The Truth Can Be So Refreshing

2009-03-20T19:17:00.000-07:00

I am not an avid viewer of the Oprah Winfrey show. It's not because I don't like her, it's just that her show comes on right after The Hubs gets home from work and takes control of the remote, usually while grumbling something like "I'm not watching any of this woman shit". In other words, Oprah just has really bad timing for my house.
But my Mother-In-Law called me the other day and told me that Oprah had Montel Williams on her show last week to talk about his life with MS (I'm sure you all are surprised to hear that he actually had MS, right? Nobody's ever mentioned that to you before, right?).
Montel told the story of how he was diagnosed, how he took the news badly, how he deals with pain everyday (and to think that doctors will still tell us that our MS doesn't cause pain) and, of course, he was also on there plugging the new book he just wrote.
I haven't been able to find the video of the show online but from what I've read on Oprah's site and from the recap my Mother-In-Law gave me, Montel gave a very honest and open interview about his ride on the MS ride.
It turns out, that in the beginning, he didn't take it too well. You know, because the rest of us took it like someone just handed us a ticket to a place where unicorns run free and it rains gumdrops and the rivers are made of chocolate and all of the vegetation is made of candy.
No, wait, I'm thinking of Charlie and The Chocolate Factory.
According to Montel, he took the news so badly that he attempted suidcide by throwing himself in front of an oncoming taxi. The taxi driver stopped, just in the nick of time of course, and jumped out of his cab and started to apologize to Montel and saying things like "Your show has made such a difference in my life. The world is a better place with you in it" you know, yada yada yada.
Even though I'm not so sure that I believe his dramatic movie-esque suicide attempt, I will admit that I found it refreshing that he admitted that this horrible disease drove him to that point.
I'm not suggesting that we all start throwing ourselves in front of taxi's to find our "epiphany" because I'm pretty sure that, even though we're "blog world famous", I've never gotten a comment from a taxi driver telling me how I've changed the world with my ramblings and complaining. So, I'm pretty sure that my taxi driver would just mow me over and keep on going. I'd end up as just another notch on his "pedestrian speed bump" tally.
I will admit though, there have been times, especially in the beginning of my MS ride, that I thought "Something HAS to give because I can't go on like this much longer." The alternative almost seemed like a vacation compared to what I, and I'm sure most of you, have dealt with and still are dealing with.
I have always had severe pain, mainly stationed in my lower back, hips, and legs. I battle fatigue, migraines, loss of balance, foot drop, limbs deciding to take the day off without giving me any notice. And then there's the changes that have slowly started and gotten worse over time. I now have the attention span of a gnat. I once prided myself on being so well spoken and now I find myself searching for simple words while in conversation. I'm forgetful, and while it bothers me, it bothers those around me much more so. Especially my husband who goes to work everyday and doesn't always have the time to make phonecalls to schedule doctors appointments, vet appointments for the funny farm animals, and other things like that. So, he asks me to take care of these things. And I have the best of intentions when I tell him that I'll get them done.
And then I'm surprised and hurt when he gets angry at me the next day for not doing these things for him. And the next day, and the next day, and the next day.
I've had people give me their advice on how I should handle these things. I have daily planners in every room, multiple calendars, notebooks, "To do" lists. The Hubs even surprised me with a gift one day that was one of those personal recorders, you know, where you can leave yourself messages to remind yourself to do things. The only problem is, it doesn't remind you where you put it the last time you used it and it also doesn't remind you to listen to the messages you left yourself earlier. That can be problematic.
I have met a few people who have MS and they've been lucky to find the right therapy right away and haven't had a flare in ten years. I'm honestly happy for them but people need to know that it's not always like that. In fact, more than not, it's quite the opposite.
So, while I sometimes find it annoying that the first thing that people say when they hear that I have MS is to say either "Oh yeah, you know, Montel has that" or "Oh that's horrible! My great aunts nephew's sister has that and that poor thing is in a wheel chair and drools all over herself", I am greatful that Montel is out there, spreading the news that having MS sucks, even if he is plugging his book along with it.

Just Wanted To Make Sure You're Aware

2009-03-01T14:03:00.000-08:00

According to the National MS Society, March 2-8 is National MS Awareness Week.

I expect all of you with Ms to get out there and make sure the world knows it.

Hit them with your cane, bump them with your scooter, whatever it takes, do your part to make sure that everyone knows about MS!

I know I'll be doing my part!

Just so you know, that man in the picture is not me. I borrowed this image with love from here.

One Of Those Days

2009-02-26T09:22:00.000-08:00

Ever have one of those days where you wake up and you just know that that day is going to be shit and you should stay in bed, but you get up anyways?

Today is one of those days for me.

And I should have known better too because, yesterday, I had a fantastic day. I felt great, got a lot of stuff done, actually cooked a meal. The kids were happy.

That was the calm before the storm.

I hate my new(er) local neurologist and am considering going somewhere else. And I don't think that it's me being irrational here.

For example:

Last Friday was my #2 Tysabri Infusion (which is going great!) and I'm in my little infusion room, watching Snapped (makes the hubs nervous), when my doctor walks in looking for samples of something.

I said "Hi, Dr. Goober" and she said "Oh, yes, well, hmm, hello."

I then said "I'm glad I saw you today, I need to ask you a question if you have a minute."

After that, I'm pretty sure that I witnessed her having a mini-breakdown. She was running her hands through her hair, and she said "No, no minutes today. There's never enough minutes! Where are those samples? I don't have time, make an appointment."

And she whisked out the door just as fast as she came in.

Odd, I thought.

But then the infusion nurse, who is really cool and a fellow Alabama dweller, tells me that she's like that a lot because she can't handle it being so busy.

Now, before I go on, I want you all to understand that I think a woman can do anything she sets her mind to.

But......

For me, I don't like my doctors to be women. It's a personal preference.

I just think about how I kind of get a little...well....crazy when things are hectic and I just don't think I would be good being in that stressful position.

I mean, think about it, if say, you were allergic to nuts, would you go to work for Planters where you're handling the nuts and putting them in the little tins?

I wouldn't.

If you were once a woman but switched yourself to a man, but kept your nether organs, and then have a baby with your wife and you say "We don't want this baby to be picked on because of a different lifestyle", would you go on TV, magazine covers, countless interviews announcing to the whole world?

Well, that one wasn't a good example, but you get what I'm saying, right?

But then I start thinking about starting the whole, painful, long, drawnout process of starting over again with another local neuro.

There are a million other painful things I would rather have done to me than to have to do that again.

Here's my wish:

I would like to find a MALE neurologist who is on the cutting edge of everything with MS, have the compassion of a woman but the stability of a man, and who doesn't want to bother me with driving to his office, he'll just come to mine! And best of all, ALL SERVICES WOULD BE FREE!

What are the odds?

This One Might Get A Bit...Well...Bit%cy...Consider Yourselves Warned!

2009-02-11T01:04:00.000-08:00

I have had so many reasons to get up on my soapbox lately. The problem is, I haven't had the energy to climb up there, nevermind unload all of my ramblings once I get there.

I guess my first gripe would have to be about that lady that just gave birth to eight babies, making her offspring total a whopping 14 children.

Here's my thing and if I offend you, I do hope you forgive me sooner or later and come back. I'm usually not this serious but there are just times when one needs to bitch and my time has come.

I had a doctors appointment this morning and as I was sitting in the waiting room, trying to control the weemonkey, I overhear on CNN on the TV, that the lady that just squished out eight babies is planning to support her family with her food stamps.

Listen, I know that times are tough and everyone hits a rough patch and you've gotta do what you gotta do to put food in your babies mouths.

But from what CNN said, she's had this plan since she went in there and told them to put every live embryo within a 100 mile radius in her uterus and to wish her luck!

I have no problem with the fact that she's a single mom. Sometimes a womans life doesn't go the way they planned but they still want to be a mother, husband or no, and science has given them a way to do that. I was actually raised by a single mom from the time I was 12 until I married and move out on my own. My mom had no college degrees. She was a beautician in the 60's but she really couldn't fall back on that since nobody was looking for a sky high teased beehive in the early 90's. Oh, if only Amy Winehouse had come along sooner!

So, to make ends meet, my mom spent her days working as a secretary in a Real Estate Office and her evenings were spent working at a Wendy's. You should have seen our dog go nuts every night mom came home from her evening job! That dog would barely let mom in the door before she started licking every inch of mom's shoes, lower pants legs, and when mom changed, the dog tried to devour her shirt and hat. The point is, my mom suddenly found herself divorced, unemployed, raising a rebellious teenage daughter, living in a house that had a mortgage she didn't think she could pay, and she was scared to death.

But instead of doing nothing and running to the government offices (I honestly have no idea who passes out the food stamps) mom went out and filled out applications for any place that had employees. And she was exhausted by the time she got home from working her second job of the day, but she was making it on her own. I can only imagine what the must have felt like.

** On A Side Note: You know, I bet that's why food scented perfumes have never been big. Guys probably loved it when their ladies smelled like a nice New York Strip, the problem was, dogs loved them even more!**

Amyway, the single mom thing is not my problem.

My problem is that the government will pay for this woman to help support her growing family. The more she pops out, the more money she gets. It wasn't like she accidently got pregnant with eight babies. It was all very much planned. And now she has 14 children, her mother seems to be a bit of a psycho, and our tax dollars are paying for all of it.

On the other hand, here I am, diagnosed with MS, unable to walk most of the time, unable to get a job, and paying an arm and a leg once a month to get my Tysabri infusions. That's ONE medication. That's not even counting the Provigil for fatigue, the anti-depressant to treat the depression that comes from MS and the depression that comes from the medications that I'm taking for MS. Then there's pain medicine, baquelofen (spelled that one wrong) for spacsticity, co-pays for the endless doctors visits, the walker, the scooter, the cane, the handicap accessible bathroom renovation.

The government didn't offer to help us with that.

And to make it worse, until I became a mother, I went to work at some sort of job from the age of 16. At 21, I was blessed to become a mother and married to a man who had the same family values and thought it was important for me to be a stay-at-home mother.

In the beginning, it was a hard road to travel. The baby had all these allergies and needed a special formula that was $25 a can and she went through a can and a half a day. I was clipping coupons for everything on my list and if I didn't have a coupon, that item didn't make the list.

When I quit working, I got a pamphlet in the mail saying that I had all of the required credits if I should ever become disabled. Imagine my surprise when I called a few months ago and was told that since all but two of those credits were earned BEFORE I turned 21, they didn't count. Magically disappeared. And now, I've got nothing.

I can't get any kind of government assistance at all. And yet, this woman can choose to have more children and she gets foodstamps, not to mention that she'll probably get WIC while those eight babies are little. Then she'll get a book deal or a reality TV show and have more money than I'll ever see in my lifetime. And I'll still be sitting here, worrying about how I'm going to pay for my next prescription.

Liberty and Justice For All....You don't say......

Another thing that's been bothering me is that I've been getting told from all different angles that I need to find a daycare for my 2 year old son for my "bad days".

For a while, I tried to convince myself that I agreed with everyone.

But then I sat down and thought "What do I want and what would be best for the weemonkey?"

I decided that I couldn't make any kind of informed decisions without going and checking one out. The place was run by the owner/only employee and she seemed really nice. She only takes in 8 kids at a time and I thought a small group could be good. The place was clean, the toys were newer and seemed to have all parts intact. There was a lot of natural light, great views out the windows. Healthy snacks and meals were served.

Maybe this could work.

Then I stood back and watched the dynamic of this facility. Well, I was told to stand where none of the kids could see me "Maybe it will help you and your son finally cut that cord!" she said.

I watched as every half hour to 45 minutes, the owner/only employee would open on of the second story windows where she already had the screen popped out. She would then lean out the window as far as she could and smoke 1 or 2 ciggarettes. Her back to the kids, she didn't know that a lot of them noticed what she was doing, hanging out the window like that, and by the looks on their faces, they thought that looked like fun.

Then it was snack time. She brings out 10 cups of juice and sets them on a child height table. Then she leaves and returns with a tray of fruits and veggies and a bowl of ranch dressing. She leaves this on the child height table with the cups. Then she remembers that she was supposed to take one of the kids to the potty twenty minutes ago and rushes him off to the bathroom.

I then watched in horror as these two kids, who were obviously sick, meander over to the table and drink out of every cup. Then on grabbed a carrot. He sucked on it for a minute and then stuck it in the ranch dressing bowl. Then he sucked the dressing off of the carrot twice before putting the carrot back on the tray with the other carrots. The other child kept sticking his grubby hands in the ranch dressing, licking the dressing off, and then repeating about a gagillion times.

When the owner/only employee finally came back, I told her about the food bandits and she laughed and said "Oh, you must have just thought they did that! They wouldn't take a flea if they thought it belonged to a dog! hahahahahhahahahaha"

I coyly walked over to my enormous purse/bag and grabbed a bag of fruit snacks, some animal crackers, and the weemonkey's sippy cup and that was his snack. I'm sure he's the only one that was there that day that doens't have a stream of neon green snot coming out of their noses. YUCK!!!

Now, I know that not all daycares are like this. And I do understand that some people have no choice but to use daycare so they can work. But I have to say, I was ashamed at myself because the reason I was looking at a daycare was because sometimes I have bad days and need to take naps to make it through.

Then I started looking back over those bad days and realized that they weren't so bad.

The weeman loves to nap so when I took a nap, he was right beside me, snoring away.

And while on a normal day, I read six or more books to him, on these bad days I always read atleast two. He was given snacks and lunches that hadn't already been tasted, and he was the only one drinking out of his cup.

We still practiced writing and did his ABC flashcards that he loves. And he always seemed happy, never cheated.

So, why do I need to take him to a daycare where someone isn't going to watch him as well as I do or know what he's trying to say when he's speaking caveman?

All of that being said, I've decided that, while I do have MS, it hasn't taken my ability to be a mother away from me.

No daycare for us. Thank you for the concerns but it's just not going to happen.

As I've said before, sometime MS might get me down but don't ever count me out. I'm still kicking ass here!

I Did It, It's Done, It's Over..For This Month Anyway

2009-01-23T12:20:00.000-08:00

Well, I did it. It finally happened. It's done. For this month anyway.

That's right, yesterday I went to my local neuros office and had my first Tysabri infusion done. After six long weeks of waiting, some mistakes (theirs, not mine), and a snow day that cancelled school, I finally had it done yesterday!

Would you like to hear my funny little story from yesterday?

Oh, I'm sure you don't.....
I don't want to waste your time.....
It's probably not that funny anyways......

OK FINE! I'll tell you! You don't have to yell!

So, my appointment was scheduled for yesterday (Thursday) at 9:30 a.m.
I can't tell you how many times I called to confirm that this was still going on and every time I was assured that everything was fine.
My friend Angie (who I thank the stars for every night!) was set to watch the weemonkey while I went.
The night before my appointment, I was on the phone with her and she asked if I would be ok to drive. I said "I hope so. I really don't know what to expect."
So, not only did she watch the weeman, she also drove me (and bought me lunch which was awesome!). And for good measure, her hubs came along too!

I arrived at the doctors office 15 minutes early with a bag packed with reading, writing, and listening supplies as well as a blanket and wearing my comfy sweatsuit that doesn't look like a sweat suit.
I walk up to the window and tell the receptionist who I am and why I'm there.
She starts going through papers and then gets a confused look on her face and comes back to the window, slides it open and says "Umm, funny but I don't have you on the schedule...Are you certain that you have an appointment today?"

I'm pretty sure that this was the moment where my face turned bright red, smoke started coming out of my ears, and alarm bells started ringing.
If this girl told me that I didn't have an appointment today and sent me home, I was going to hurt someone.

But all was well when they called the Infusion Nurse who confirmed that she managed to squeeze me in and told her to send me back.
That receptionist girl was lucky. Very, very lucky.

So, it's done for this month but, I have to say, I am so glad that Angie did drive me because I was exhausted and still am. I really don't know what to expect so I'm just kind of riding it out in the hopes that it subsides.

In other news, I had my first interview yesterday on my other blog and since it started with a question about MS, I thought I would share the interview with you all too.
Hope you enjoy it!

Question #1:
You've got MS. How did you react to hearing that you contracted this and how do you and your family cope?

Me: Wait a minute..what? I've contracted what you say? Is that like a VD or something that kids these days made up, like cooties?
Oh, just kidding.
Yes, for those of you new or ignorant, I do have MS (Multiple Sclerosis). I'm not sure that you "contract" it so much as it just grows there, in the white matter of your brain. (I actually blame all of my old high school friends for all of the peer pressure that they put me through because I would NOT have smoked so much...um...special ciggies..if it weren't for them!)
Well, first I tried to ignore it.
I had always heard that saying "Ignorance is Bliss" and thought maybe that would work out for me.
Unfortunately, that was not the case.
Then I got really angry, except for I didn't have anyone to be angry with. So, I attacked the unassuming people around me for doing things like breathing in my area. I'm not kidding here.
My poor husband saw that I was having trouble with my leg so one day he brought home a cane for me. While that was a nice jesture, at the time, it made me really mad and I think I smacked him with it. And have several times since. (That's one thing the cane is great for!)

At this moment in my life, I am not so much in the "acceptance phase" as I am the "I'm tired of feeling like crap so I've got to do something about it" phase.
With the help of my wonderful husband, I have come to the conclusion that this is not going to go away so I'm going to plan B: I'm gonna kick it's ass.

Question #2:
If you could pick one dream of yours to come true in your lifetime, what would it be and why?

Me: Since my father's passing, I've often had this dream where I'm at a party and I sit down on a couch and turn my head to realize that I've sat down beside my father. In some subconscious state, I knew that this wasn't possible, since he had died when I was 19 and pregnant with the first monkey, but in the dream it feels very real. So, we sit and have a conversation, my father was always big on theories and destinies in life, and this was the kind of conversation we had in my dream. I asked him if he knew that I had children and he said that he watched them everyday and he promised me that there was something else after this life. Then he says that he has to go back and gets up and I watch him walk down this really long hallway.
That is the dream I would love to have come true. One last conversation with my father, knowing that he sees his only grandchildren, would give me so much peace.

Question #3:
You've got many online blogger friends. If you could hold an annual blogger friend reunion, would you and who would you have host the event?

Me: I honestly never thought it could be possible to call people your "friends" when you've never met them, but I do consider them my friends.
I think it would be fun to have a "Blogger Reunion"!
When you read someone's blog regularly, you get an idea of what the person is like in real life. I think it would be interesting to find out how close I am in life.
To host it? That's a tough one...
Ok, how about this?
I want it to be somewhere warm and not always raining so we'd have it at Jean Knee's house BUT seeing as how the contents of her fridge (and freezer) can be creepy, I want Bee's mom to cook (I hear she's an amazing cook).

Question #4:
Name 3 Real Life heroes of yours and why they effect you so much.

Me: 1. Not to get all smooshy gooshy, but my husband would definately be #1. He is a truly good man, a wonderful father, and he put up with me before I had MS (and I was kooky back then!). And I know that I wouldn't be where I am if it weren't for him, especially healthwise. If not for him, I would still be sitting in a dark room with my fingers in my ears, going "LA LA LA I CAN'T HEAR YOU!!!"
2. My Grandma Emma. She was 1 of 13 children who were raised poor, with a father that could be a bit abusive, and she only went to 8th grade in school. But she went on to marry and spend the rest of his life with my Grandpa, birth and raise three children, and worked a country store with my Grandpa in rural WV.
And she could swat your butt with a flyswatter so fast that you wouldn't see it coming or going!
3.Bob Ross is definately up there too. Seriously, have you seen how happy his little trees and little squirrels are?

Question #5:
If you could come back after dying and see the impact you've made, what would you want that impact to be and why?

Me: Well, since my dreams of being a super hot, super talented, world known rock star who played guitar and wrote her own songs didn't work out (Thanks mom for not buying me that guitar and lessons when I was 10!)(no that I'm bitter about that anymore) I would come back to check on my kids to make sure they're still following everything I taught them.
Examples Would Be:
*Are they good people?
*Are they litter bugs? (cause if they are after all of my in car lectures of how wrong that is, I will haunt them!)
*Do they replace the toilet paper roll or paper towel roll when it's empty?
*Are they wearing clean undies?
*Do they talk to each other every day and have good relationships?
*Have they set up a shrine in my honor?
*Are they hard workers?
If I should happen to go to the great beyond before the hubs, I plan to check in on him too. I don't want any unsavory women in my house, looking at my things, or talking to my children.
In fact, maybe I will be stuffed and put in the corner of our bedroom and that way he will neer feel safe bringing any of these unsavories home. Something to think about.

The interview questions were sent to me by Jormengrund after I left a few tantrums in his comment section. Someone finally took the hint! Thanks Jorm!

It's Kind Of Like "Hide N' Seek" Except for I Don't Stop Hiding And I'm Definately Not seeking..

2009-01-20T12:33:00.001-08:00

My husband seems to think that I've become a recluse. I have no idea why he would think such a thing.

What just because I don't ever leave the house?

Or answer the phone?

Or invite friends over?

Ok, it would seem that I'm not making a great argument for myself here.

It's not because I'm a recluse, though. I have valid reasons for each of those examples.

*I don't leave the house because it's winter here in West By God Virginia (if you're a native, that's how you have to say it) and it's colder than a witches hoohaa outside. I don't do cold. That's nothing new.

I hate all of the bundling up then getting in the car and getting hot cause the heater is on high so I have to un-bundle, then when I get to my destination I have to bundle up again.

I hate the wind, the snow, the bitterness of winter. Always have, always will.

Nothing new there.

*And yes, I may have stopped answering the phone but that's because I feel that I just don't have anything to say. I hate making small talk about nothing and I hate even more that every conversation leads to me talking about my MS and then the person on the other end of the line starts feeling all sorry for me.

Plus, there are times when the phone will ring and I look at the caller ID and think "Ugh, I just cannot deal with a conversation with so and so right now."

*I haven't invited anyone over lately because that means that I would have to:

1. clean up the house

2. shower and change out of my sweatpants and long sleeved t-shirt that has become my uniform.

3. Put on a Bra. Ugh...I would rather fight a bear than put that contraption on.

4. Have interesting things to talk about.

Ok, yes I get it. Those are horrible reasons and I need to snap out of it. But for some reason I just feel, well, stuck.

Kind of like that but with a few changes. First of all, I would not be outside, nevermind climbling a tree, and of course, it's missing my sweat pants. Oh and I'm not a dog. Yeesh, I haven't let myself go that bad! But other than that, I feel exactly like that.

The thing is, though, I don't feel isolated or alone. I'm not wandering around the house, wringing my hands, crying, and depressed because I'm alone.

In fact, it's quite the opposite.

The weemonkey and I hang out, watch cartoons, and play. And then we take a nice nap. Then we wake up, have lunch, do some coloring. It's all very important stuff we do. I've almost taught him how to write his name, we're in the process of potty training (the weemonkey, not myself) and we stay inside, warm and unbothered.

I know that I should be calling my friends (all two or three of them) and having them over for playdates and coffee but I'm just not up to it. And it has nothing to do with my friends or their kids. I just prefer my days to be the way they are.

No schedule, no structure, just me and the weeman. And then when the older monkeys get home, we do homework and wait for The Hubs to get home.

I'll be the first to admit that it's not exactly the "jet setter" life that some people feel they need to have. I know those people, I once was one. I was Super Mom! Always on the go, always volunteering at the school, taking the kids to dance classes, having playdates, go, go, go.

Then I realized, that in all that time playing Super Mom, I wasn't taking care of myself and I wasn't really spending time with my family. I guess, in that way, you could say that the MS has been a blessing or a wake up call.

I have decided to look at it this way.

Maybe I'm not becoming a recluse so much as I'm in a form of hibernation, waiting for the Winter and all of it's cold and bitterness to go away so that I can come back out and "bloom" in the Spring.

Now, doesn't that sound so much better than being a recluse?

P.S. I still haven't gotten my first injection of Tysabri. They've rescheduled me for the third time now. Supposedly, this Thursday is my day. We'll see. Maybe the 3rd time will be a charm!

Is There A Time Frame On How Long I Have To Wait To Strangle Them?? Cause I'm Ready NOW!

2009-01-14T03:59:00.000-08:00

You all warned me, but did I listen?

Oh no, I chose to give them a chance. I had hopes.

I was wrong. I WAS HORRIBLY WRONG!

Who am I speaking of, you ask?

I'm talking about the office staff at my new local neurologists office.

You all told me to watch out for them but I didn't listen and now I want to strangle every one of them!

As I may (or may not have, I can't remember) told you, I am in the process of switching MS Therapies from Rebif to Tysabri. I stopped taking the Rebif when the nurse from the doctors office told me to and was waiting for the call that would tell me when my first injection would be.

When the call didn't come, I started to get nervous. The month off from Rebif was hell for me. I've had two major flare ups, my fatigue is at an all time high, I'm forgetting stuff all over the place, and my body hurts like I've played a game of football by myself against the Steelers (I love Big Ben!).

Finally, I called their office and was told that they were having trouble getting the insurance to approve the medication. "That's funny" I thought, our insurance usually doesn't require approvals.

When I explained it to The Doc, aka the hubs, he thought it sounded funny too so he called the insurance people and was told that, not only did we NOT need an approval, but that there was no request for the Tysabri on record. THEY HADN'T EVEN CALLED ABOUT IT YET!

So, the hubs called my neuros office and worked his magic (and by that I mean he scared the crap out of everyone there) and an hour later I got a call saying that the insurance had "approved" my Tysabri and that my first injection would be Jan. 10th, which was last Friday.

Thursday, I got a call from a mail order pharmacy called Caremark, not the one we use, who informed me that my medication was ready to be shipped out but they had to tell me of my co-pay first. Wanna know how much they wanted???

$698.00! A MONTH!!!!!

When I called the nurse again to ask her why she didn't use our mail-order pharmacy, who would only charge us a co-pay of $50 for three months, she told me that I told her that Caremark was our pharmacy. Oh, so now it's my fault?? I guess when all else fails, you blame the patient.

Then I thought back to when I had to fill out this book of forms that they mailed me before my first visit and I distinctly remembered (well, not remembered so much as found the copy that I made of it) that I had filled out a paper telling them the information on my mail order pharmacy. I told the nurse that I had not given her the wrong information and she said, very snottily (is that a word? snottily? snidely?) that she was holding the original in her hand at that very moment and said that I had written down this other pharmacy. "Oh, really?" I asked her, trying to be as snotty to her as she was to me, "because I made copies of all of those forms and I'm holding the copy and mine has the correct information on it.

After all was said and done, it turns out that the office staff was the ones who had made the mistake.

I KNOW! I was just as shocked as you are now!

It has now been six weeks since I have been on an MS Therapy and it has been six weeks of pure hell with a couple of good days mixed in here and there. When the nurse called me the last time, I tried to explain this to her. I told her that I understood that I wasn't their only patient and I know I'm not the Jiminy Cricket on her shoulder at night, not letting her sleep. Then I tried to explain to her what the past six weeks have been like for me. I've had three flare ups, two that effected my speech and balance, and all three gave me fatigue to the point that my husband had to stay home from work a couple of days because I could not keep myself awake for more than 15 minutes at a time.

Would you like to know what her response was? Ok good, cause you're getting it!

She said "Well, through it all, it sounds like you've been getting by just fine."

Oh yeah, I'm getting by just fine and dandy thanks.

Before I go, I have to tell you something that I did. It's one of those "Everyone is already laughing at you so you might as well laugh too" kind of things.

I have an email account that I use just for an online MS support group that I'm a member of. But every time I went to sign in, I would always end up mispelling my password once or twice and it was starting to drive me crazy.

So, two days ago, I changed my password and I remember thinking "This is something I will never be able to forget".

Well, I forgot it.

And I have no clue as to what it might be or what it pertained to. Yesterday, I tried so many passwords and zipcodes that my account was locked for 24 hours and I think I'm getting pretty close to that again today!

Do any of you have any ideas what I could have changed it to? You all probably know better than I do right now!

When A Month Lasts An Eternity

2009-01-07T12:03:00.000-08:00

I had all of these great ideas to write about for this post but, like a dummy, I forgot to write them down and now I'm sitting here, staring at my computer screen, trying to figure out what those great ideas were. This whole forgetfulness, that I'm told is called MS Brain, is such a wonderful thing to have.

I start my Tysabri injections on Friday. I have a lot of hope that this will help me to become a somewhat normal person again. Well, no that's no right. I was never a normal person.

Hows This? I'm hoping that it helps me to be some of the person I was before the whole MS thing came along. That's better.

I will say that being off of any MS Therapies has been a hellish ride for me.

**On a side note, are any of you on Tysabri? I would love to hear some feedback on what it's like, how you're doing, what to expect immediately after the injection, etc. etc.**

For the past month and one week, I have been an all over the spectrum mess.

In the beginning, I felt horrible. I was fatigued to the point that I couldn't keep my eyes open, my entire body was in immense pain, and I could have ripped the head off of Mr. Rogers just for asking me to be his neighbor.

I've had three flare ups where my speech was affected, as well as my walking, and sleep. I find it kind of ironic and somewhat cruel that this disease can make you so fatigued and you have to fight through it during the day and simple tasks, like emptying the dishwasher take you an hour and a half. Then it's finally time to go to bed and suddenly, you're wide awake and cannot lay still so you get up and go watch TV until four in the morning. Good times.

I've had some really good days too. Days where I could go, go, go without needing to sit down for a second. I did so many errands, organizing, cleaning, and laundry that you would have thought I was on crack.

And you wanna hear something funny? After not being able to do a lot of things for yourself for a long time, I found myself excited, almost giddy, to do laundry! Seriously, I can't explain why I was excited about it because normally, I hate laundry. I would go into the laundry room like I was walking into a pit where I would have to wrestle a lion.

But on these good days, I was a laundry fool. I washed, I treated for stains, I even separated the whites and used bleach! And then I would wait and pace, and keep going into the laundry room to see if the washer was done, always disappointed if it were still going. And then I did the same with the dryer. I hung clothes on hangers, folded the others in pristine folds, organized my daughter's closets so that it would be easier for them to find their clothes.

I was laundry crazy!!

But of course, after two or three days, the good days came to an end and I was back in bed, watching Snapped marathons on the Oxygen channel and making the hubs nervous. At one point he even said to me "If you're planning on killing me, just know that you're a terrible liar and you will get caught." to which I replied "Honey, I'm not watching this show for ideas on how to kill you! All of these women got caught for crying out loud!" For some reason, that did not put his mind at ease....

But I have to say that my proudest accomplishment thus far of this month happened on my other blog. You can check it out here.

Here's the scene:

It was one of those nights where I couldn't sleep and I was in a lot of pain. So, I got up, took one of my pain pills and headed into the living room to watch some more episodes of Snapped or something. Of course, the show you want to watch is never on when you need it so I picked up my laptop and was surfing the web. By this time, the pill was kicking in and I was feeling a little loopy at best.

One article lead to another and I had come to the conclusion that some, notice that I say SOME of the more extreme animal rights activists groups are a little...well...insane.

Now, don't get me wrong, I'm all for the protection of animals and all of that but there are some cases when I think they've gone a little too far. I'm not going to get in to it on here, you'll have to go read the post but lets just say breast milk in Ben and Jerry's Ice cream is not a good idea.

Long story short, I wrote a post, not naming any names, about how funny I found some of these extreme groups ideas. (Who goes to KFC for a vegan meal?? Anyone?)

Of course, the next morning I woke up thinking that maybe that post might have been a bit offensive. I had no idea how right I was! All I can say is that I hope the Vegan Commenter isn't homicidal.

So, yeah, I made someone mad and it might not have helped that my faithful blogger friends left comments for her like:

*She needs a good cheeseburger, then she would chill out.

*Did somebody just mention veal? Oh, now my mouth is watering!

*It sounds like she's going through steak withdrawal.

But secretly, I have to admit, I'm kind of enjoying it. But don't tell anyone!

Oh Geesh, This Can Be Hard Work!!!

2009-01-02T22:40:00.000-08:00

I happened to look at my blogger dashboard and was appalled that I haven't posted since December 23rd! That's last year, for crying out loud!
I keep finding myself in a daze, as if I'm unable to convince my brain that it actually is 2009.
I mean, yes I'm forgetful and I do tend to misplace things, but it would appear that I've gone and misplaced a whole entire year! Well, not exactly the ENTIRE year, more like from May to December. You do the math..then get back to me on how long exactly that is, okay?

I'm not one to make resolutions for the new year. I find that if I make a resolution, this impossible goal that suddenly seems possible after several glasses of champagne or Old Milwakees Best (hey, I don't judge), then you're already setting the year ahead up for failure, depression, and anger.
I think that I unwillingly go through that enough already, don't you?

So, since I don't have to do all of that thinking over what resolutions I'm going to not stick with, I've had a lot of thinking time. And, even more bizarre, I found a lot of things funny.

This is what I've realised: I have said more bizarre, childlike, even spacey things to people over the last eight months than I have in my entire life.
Here are just a few that I remember:

1. To the Dodson's Exterminator "What time do you think you'll be here because my naptime is between 11-2 and I can't be disturbed during my naptime."

2. The conversation with the DirecTV guy who came to move our lines after our renovations:
Him: Mam, would it be ok if I use your phone?
Me: Sure. Would you like to push or look?
Him: Uhmmm, excuse me?
Me: [HUGE sigh as if he's the idiot] Do you want to push or look?
Him: I just want to use your phone?
Me: Yes, I understand that you want to use the phone. What you don't understand is the fact that I tend to put things in places that I don't remember and that don't make sense. So, would you like to push the "page" button for the phone or look for the phone?
Him: Uhm, push?
Me: Ok then! Get to pushin!

And do you know where I found the phone? In the dryer. The dryer that was running, drying towels. Yeah, I know.

3. I told my "center" child to pick up her suitcase. She looked around the room and said "Where is it?" "It's right at your feet, child! Look down and you'll see your suitcase!"
She then looked down, then the lightbulb visibly went on in her head, she had realized that her mother was a boob. She then looked at me and said "This here {pointing at the "suitcase" to which I shook my head "yes"] Well, I'll pick it up and put it away but I refuse to call my SLEEPING BAG my SUITCASE!"
Yeah, I was trying to tell her to pick up her sleeping bag but for some reason, suitcase was what was coming out.

4. I have said, on numerous occasions, to my husband "You really do love me, dontcha?"
That statement usually followed conversations like this:
12:15 p.m.
Me:Hey, honey? Did you get the mail today?
Him: No, it hasn't come yet.
Me: Oh, okay.
12:30 p.m.
Me: Hey, honey? Did you get the mail today?
Him: [letting out a slow, deep, meditation like breath then says through gritted teeth] No, it hasn't come yet.
Me: Oh, okay.
12:45
Me: Hey, honey?
Him: No IT HASN'T COME YET!
Me: How did you know what I was going to ask you?
Him: Because this is the third time you've asked in the last half hour.
Me: And you didn't strangle me?
Him: No, but the urge might have been there.
Me: Awww, babe, you really do love me, dontcha?
Him: Yes and who would raise the kids if I strangle you and then get myself put in jail?
Me: I'm going to ignore that last part and just go with "You really do love me".

I guess that's one of the good things about having this disease. When I feel like I'm going crazy, it's always comforting to know that I'm driving the people around me just as crazy so I'm not alone.

Ahhhh..The Holidays Are Coming..Whether I Like It Or Not

2008-12-23T07:41:00.000-08:00

Well, Christmas is officially on it's way. Only 2 days away.

I'm in such a strange place. I'm not in the "Christmas Spirit" at all. And this is very unlike me.

I am usually one of those people who get so excited about the holidays. I have about ten totes filled to the brim with Christmas decorations, dishes, a Dickens Style village, and an enormous Santa figurine collection.

Every year before, you would walk in my house into a house that looks like Christmas threw up all over it.

This year, I had to be forced to get a tree. And the decor is at a bare minimum.

What is wrong with me?

This is kind of what I'm dealing with:

Before:

Okay, this is not really my house but you get the idea.

And Now:

Sad, isn't it?

The funny thing is, though, is that nobody has noticed. Well, I have but none of the other people in the house haven't noticed a thing.

None of the children have said "Hey mom? Where's the Dickens villiage that you always tell us not to touch?" or "Where are all of those weird Santas that you stick everywhere around the house?"

It's amazing. They're as happy as can be and they don't even care that it's the bare minimum.

Which leaves me to wonder, who the hell was I doing all of that for? The hubs could have cared less, the kids seem almost relieved that there's nothing that they will be yelled at if they touch, and I'm not exhausted from putting everything out and then dreading putting it all away when the holiday was over.

It's all kind of strange and wonderful at the same time.

Another thing that has changed about this Christmas is that we are staying home for the first time ever. Before, we always traveled to see family. We would either fly to Arizona to see my inlaws. And while it was always nice to see both of them (I mean that, I have truly been blessed with wonderful in-laws) have you ever tried to fight through an airport with three little kids and a thousand carry-ons, rushing to your gate so that you don't miss your flight only to find out that it's been delayed for three hours?

So, you open the carry on that has all of the activities that you were planning on using for the plane and try to entertain them for three hours. Then you finally get on the plane for the five hour flight and you've spent all of your activities in the airport and the kids are bored and they don't want to sit still and the guy in front of you reclines his seat as you're bent over, digging through bags trying to find snacks or ipods or DVD players. You finally find that thing that your one child wants and she's happy but then the other asks for something so you're digging again and that is the moment that your two year old son decides to find out how the table works and it slams down on the back of your head. And you're trying not to lose it because you haven't even LEFT THE GROUND YET but it's getting really hard. Then there's the endless trips to the bathroom and then the baby decides to poop and have you ever tried to change the poopy diaper of a toddler in an airplane bathroom????

The times we didn't fly to Arizona, we normally drove to Connecticutt to see the rest of the hubs family and while driving is a little better than the plane, there's the endless potty stops and complaints about being cold/hot/bothered/unhappy with the world in general.

Then you get to your destination, where a family member has offered to let you stay in their guestroom and sleeping arrangements are insane and you really don't want the kids touching anything in the house. And you're spending the whole time trying to convince the hubs' side of the family that just because you are from West By God Virginia, you are not a hillbilly and yet your children are walking around acting like the Clampets and you just want to scream!

Now, don't get me wrong, I love seeing the family but I always end up stressed out because I want my children to look perfect and act perfect and WHO ARE WE KIDDING? They are children!

So, this year, we have decided that we are making Christmas all about us and our little family of five. We are going to have the traditional Catholic/Italian Christmas Eve dinner of seafood and then we're going to watch...oh I'm so giddy about this!!!!....The first one of the marathon of A Christmas Story on TNT!!! I have watched that marathon every year of my existence and I love it. Then we'll wake up Christmas morning and open presents in, get this, our pajamas!!!! Then the hubs will make his famous "Big Breakfast" and I am going to make a Christmas dinner that involves making my first ever turkey. Pray for us that I don't kill us all from salmonela!

It may not sound as exciting as going to Arizona or Conecticutt but it's going to be ours and I can't tell you how happy I am about this.

Now, if I could just get that Christmas Spirit that everyone is talking about.....

Um, Say What?

2008-12-12T04:16:00.000-08:00

This is my 20th post on this blog. It's funny to me since I have 665 on my other one.
So, do you ever sit down and start thinking about life and your MS comes to mind and even though you already knew it, it hits you again:

Wow, this IS for the rest of my life. Holy S*%t!

Maybe it's still the fact that all of this is still new to me and, honestly, it's made my life really crappy for the last eight months, but I honestly do have those times when that thought comes to my head.
For instance, my oldest monkey came up to me the other night and said "Remember when we made those plans to go to Disney World in a year? That's still happening right?"
Without thinking, I said "Sure honey, why wouldn't we be going? We already have reservations and things. Why would you think we wouldn't go?"
"Um, well, because of your MS."
And I sat there for a second and it hit me, oh yeah, I'll still have "my MS" in a year, right. Cause it's here forever. Right.

I guess I'm still getting used to all of this.

But there could be perks to going to Disney now.

I'll have my scooter and by then I plan on switching out those wimpy wheels and horn for something more, how shall we put this? Substandstial?

Yeah, like that but only four more of those.

And the horn we've already discussed.

Oh, there will be danger, my friend. In fact, Danger is my middle name. (Actually it's not but I was on a roll of coolness.)

On a serious note, I've made myself a goal. I'm calling it the:

"No Weather Permitting Will Be Said Goal"

I know that doesn't make sense but I can help you. During the winter months, whenever my mother is making any plans to come and visit us, at the end of every conversation she will say "Of course, you know, this is all Weather Permitting, right?"

I don't want to tell my kids "Yeah, we'll go to Disney, As Long As Mommy Feels Good. It's the same difference, to me atleast. Because, just like snow in the winter, we all know that we can go from feeling great to poo in 2.4 seconds.

So, I am keeping our plans. If I need to add a nanny, I can handle that. In fact, we might do that anyway. But my children will see enormous rodents next spring!

How do you all manage family vacations?

A Huge Thank You And Some Random Thoughts

2008-12-05T19:27:00.000-08:00

I hope that you all have noticed that Sarcasm, Kids, and MS has been pimped out!

You have noticed right?

Ok, I'm gonna stop for a minute and you take the time to look around......

.........

It's awesome, I know!

I owe it all to AngieSS who writes at the blog Cup of Snarky. Thanks Angie!!!

It's funny how it all came about, Angie pimping out my blog.

See, I went over to visit one of my favorite people, Bee at BeesMusings and I realized that everything was different and amazing. Bee had been pimped!

I then read her post where she bragged and rubbed in everyone's face about how AngieSS had pimped her blog all out and look at what a great job she did.

So, in the comments, I wrote something completely subtle and humble cause that's just who I am (stop laughing!). I think my comment went something like "I sure wish Angie would come and pimp my blog. I'm so bored with it. It's actually considering jumping off a bridge cause it's soooo boring." (I'm not talking about Sarcasm, I'm talking about my other blog Rambling Thoughts)

A few days go by and I had actually forgotten about that comment (ha, along with about a million other things) when I get this email. Angie wanted to pimp me out! So she did! And I sent her an email, thanking her from the bottom of my heart, and I may have mentioned that I had another blog she could pimp..hint hint...and she did!

I have to say, I am so thankful to her that she did because I tend to be a bit computer illiterate. Seriously! For example, I just now learned how to use the Paint program on my computer. And isn't Paint like a gagillion years old?

So, Thank you so much Angie! I love the new look and Lord knows, I couldn't have done it without you!

In other news, I have been dealing with the mother of exacerbations!

The pain that I'm always in is doubled and yesterday I woke up talking like Forrest Gump (well, not exactly like Forrest but that's kind of how I feel. I keep feeling like I should say "I'm not a smart man Ginny, But I know what love is!"), and my balance is way off. I mean WAY OFF.

Let me try to explain it to you: Most people know when they're standing up or even when they're falling over right? Well, I feel completely normal until I feel myself hit the floor.

What is up with that?

And as most of you know, having your eyes closed doesn't help much but there are some times when you just can't help it.

For Example: My neurologist asked me if I closed my eyes when washing my hair in the shower. I said "Of course I do, have you ever gotten shampoo in your eyes? It hurts!"

By the way, I think this is why my neuro at Georgetown treats me, I tend to be a bit entertaining.

Anyways, he says "Well, you've got to stop it. Wash your hair with your eyes open so that you don't fall."

And I've tried to do it but the thing is, it's been built into my daily habits. When I was "Little Tracy" and my mom was teaching me how to wash my hair, she told me to "keep my eyes shut". And then there would be times when I would forget to shut my eyes and the soap would get in and I would start screaming things like "Owe! Soap is in my eyeballs! Owwwwwww!" and I remember my mom saying "Well, I said to keep your dadblamed eyes shut! Whatsamatter with you??"

So, yeah, now I am having trouble keeping my eyes OPEN when I know that they should be SHUT. And I really don't think that this is where I intended on going when I started writing about my flare up but, hey, the mind has a...um....mind of it's own right?

And I'm still not in the "Christmas Spirit" and I don't mean all of those crazy shoppers version of the Christmas Spririt where you have to trample and shoot people.

I'm just not feeling it this year.

Normally, we would get a tree the weekend after Thanksgiving. This year, still no tree.

I have totes of decorations that are always put out the same weekend as the tree. This year they are still toted.

I don't know why I'm feeling like this. Does this fall into the "First Year of MS" category or is this something all it's own?

Well, one thing I did do was get the kids Christmas portraits taken. And that is what I'll leave you with.

The World Is Not Safe For Anyone Right Now!

2008-11-30T12:52:00.000-08:00

I hope everyone had a happy Thanksgiving. Mine was pretty good. It went by quickly though. We couldn't find anyone to watch the Funny Farm animals so we had to make the three hour trip to my mom's on Wednesday and then do the three hour drive back home on Thursday after we had stuffed ourselves to the point of popping.
I don't know why, but long drives seem to kick my butt now. When I was 18, I could pack a duffel bag with a change of clothes and a toothbrush and take a road trip with my best friend without a moments notice.
But when we got home Thursday evening, I felt like I had been in the boxing ring for 12 rounds and lost terribly. I don't think I got out of bed at all on Friday.
It's good that we didn't stay all weekend at my moms like we normally do because she would have talked me in to going shopping on Black Friday like she always does. I don't know how this happens, really. Every year, we get to my moms and I make the declaration "I don't care if you go or not, but I am NOT going shopping on Black Friday!" And then I suddenly find myself in the middle of the mall or WalMart, fighting for my life.
This year I knew that the marathon shopping was not going to happen for me. I'm starting to acknowledge that I have limitations. I don't like them, but I know that they are there. And I know that one of those limitations definately include not going shopping on black Friday.
And after watching the news, I am so glad that I stayed put in my comfy bed!
I know that the people that go shopping on black Friday are looking for great deals but I didn't know that this meant that they would throw aside all of their manners, compassion, empathy, and human decency to do it. And for the love of all that's holy, where is the Christmas Spirit?
Stampedeing over a WalMart Employee? Shootings in a Toys R Us?
It's like they've turned into wild animals!
Can't you just imagine Christmas morning with one of these people?
Gift Recipient: Oh wow, a laptop! Thanks..But I already have a laptop..
Gift Giver/Rabid Animal: Do you know how many people I had to TRAMPLE OVER to get you that laptop? You better smile like you like it!

I am just so glad I didn't go. I would have hate to put dents and scratches all over my brand new scooter by running over these rude people. And I haven't even upgraded my horn yet so the only warning they would have is a tiny little "beep beep" before I plowed them.

This year, I'm sticking to shopping online. How are you all doing it?

Memories.....Oh and Happy Turkey Day!

2008-11-26T11:01:00.000-08:00

I'm sorry I've been MIA lately on this blog. I guess I'm in sort of a funk and I don't want to keep moaning on and on about it and chase you all away, you know? I've kind of grown to like you little boogers and I wouldn't want you to run away because of me being...well..funky.
I don't know if I told you all about how we're in the finishing touches of a huge home renovation. Did I tell you? I can't remember..
Ok, so we're in the finishing touches of a huge home renovation, there happy?
And the other day, we were moving totes in from the garage and the hubs gave me the most dreadful job of going through all of the stuff that I had hoarded in them. (I happen to be a bit of a hoarder. I come from a long line of them. My grandmother use to serve stuff in plastic butter bowls from, like, 1950)
So, there I am, going through the totes. No big deal.
And then I started finding some things that kind of hit me.
Like all of the kids scrap books that I've made them. Pictures of me being very young and very pregnant. Me as a young mom with two tiny baby monkeys born so close together that everyone thought they were twins. Pictures of me and the hubs before marriage and babies and home mortgages.
Then he brought in, and this is going to sound really stupid, but it was the final straw.
He brought in my pink golf bag.
See, the hubs loves to golf. Would do it everyday if there weren't this pain in his side called "work".
One weekend, two years ago, he had plans to go golfing but his buddy cancelled on him. The hubs looked like someone has shot his puppy. He just looked so sad. So, I offered to go. I don't remember if I was thinking that he would say "Thanks, but no" or "Okay, get in the car!" but he took me up on the offer. I had never been golfing in my life. I had seen a golf coarse and I've seen golfers play on TV so I thought it would be no big deal.
We played 18 holes, I wrecked the golf cart twice before he said I wasn't allowed to drive anymore, and it turns out that I'm one of those people who can whack at that ball with all of my might and it will only go like twenty feet. But the cool thing was, he didn't care. We had a great time, laughing and just being relaxed and hanging out. It was a great day.
After that, I started recieving gifts for no reason.
First came a huge box that contained my brand new pink golf bag.
Then I got some "girlie golf clubs" as he called them.
Then I got some pink, pearly golf balls.
We started golfing together as often as we could. And every time, it was a great time.
But then this summer came and there was no golfing.
I was too sick and he felt too guilty to go.
And I really missed it. I missed us together on the golf coarse.
So, that's why the funk rolled in.

But, in other news, as I'm sure you all already know, tomorrow is Thanksgiving. A day where we worship the turkey, football, and gigantic floats in parades. I hope you all enjoy your day!
Happy Thanksgiving To All!!!

Here Are Some Things I Do Remember

2008-11-23T08:05:00.000-08:00

I'll warn you all now, this one might not be funny. I'm feeling a little...what's the word? Maudlin? Not depressed really, just, well, blah.

My therapist, whom I love dearly, has given me the task of journeling again. So far, only random things have been written down but last night I started writing about the things I remembered about myself before MS moved in and I thought that I would share a few of them with you.

Here goes:

Things I Remember About Myself Before MS

I remember laughter, I remembering enjoying the feeling. I remember the hubs and I laughing together a lot.

What I can't remember is the last time I actually laughed. I mean truly, unabashedly laughed. Sure there have been times when I've done a "ha ha" to make someone think that I thought whatever they were telling me was funny, but I can't remember the last time I laughed and meant it.

Smiling is another thing I remember.

Sure, I smile now but it's not a genuine smile with feelings behind it.

No, now the smiles are used to put everyone else around me at ease.

I see the look on someone else's face and I know that they need some sort of assurance that, even thought I feel like I've been hit by a truck who then backed over me and hit me again, all is right with the world.

So, I wake up those old, rusty smile muscles and give them the best smile I've got in me.

And you can see their shoulders become lighter. All is now right in the world. Their world anyways. My world is still turned upside down.

That's one of the things that I have found so interesting about this disease.

Since being diagnosed eight months ago, I've spent a majority of that time assuring everyone else that it will all be okay.

What I really feel like doing is throwing a full on, two year old, body thrown to the floor, feet kicking, arms swinging, screaming at the top of my lungs, temper tantrum. But then someone might knowthat everything is not okay, right?

Another thing I remember, back in my "Super Mom" days, going non-stop all day, volunteering all day at school, dance classes, girl scout meetings, etc. and when I finally to bed, I would climb in between the silky sheets and just breathe.

I loved that feeling. The contentment and happiness to get into my bed. I would even say, either to my husband or to no one at all "God, I love this bed!" sigh....

I now hate my bed.

When fatigue set in and then came the exacerbations, I was forced to spend so much time in my bed, alone, away from my family who were downstairs going on with life. I grew to hate that very same bed, with those very same silky sheets. I wanted to join my family. I wanted to fill my chair for family dinner. Hell, I wanted to cook the meal for family dinner, but my body wouldn't let me.

I would lay there, in that bed, alone, and yell to an empty room "I HATE THIS BED!!" Then I would go on to add "And for that matter, I'm starting to hate my body! What kind of a body just decides to just STOP WORKING???"

Another thing I remember is being able to actually remember. I didn't need to make millions of lists and post it notes just to get through the day. I could remember an entire grocery list in my head. Now, if I have to go to the store for one thing, say coffee beans, I have to write it down! One thing!

I'm starting to feel like a child again who shouldn't be trusted on their own. I push myself too far, I can't remember to turn off the oven (that actually has not happened yet by the way) and honestly, I'm a bit of a mess. Maybe I need a nanny.

So, there you have it. Just a few of the things I remember about me and life before MS came to live in my body. Do you all remember anything?

I'm Still Alive And Kickin'..Well, Maybe Not Kicking Exactly...

2008-11-20T15:26:00.000-08:00

Ok, all of you fellow "veteran" MS people, I have one question for you (actually, I could pelt you with questions until your eyes roll back in your head). Are you ready for my one question?

Does this first year of never ending crap ever stop? Is there a light at the end of my tunnel or is that a train coming straight at me??

Yes, I realise now that those were two questions but they're grouped together into a cluster for one answer.

Ugh...

I just do not get this whole disease! And, to be honest, I'm pissed at it all the same!

I didn't want to turn this post into a whiny, woes me, I must be the only person on earth dealing with this so everyone must feel sorry for me post.

I guess that I should have made some sort of disclaimer when you all started showing up so that you wouldn't be disappointed. Something like:

**Warning:This person is NOT always funny! In fact, sometimes she's rather bland and whiny!

I guess that I was hoping that the first doctor, the one who diagnosed me, would be right. That I would start the Rebif injections and start popping the Provigil and I would instantly be right back to my old self.

Now I'm worried that "my old self" may be a goner.

Let's talk about something else....lalalala..I know!

Ooh! I forgot to tell you all that I got my "new ride"!

That's right, I am now the proud owner of a scooter. But I have to tell you, I'm a bit dangerous on the thing. Seriously! As in I've had it for two days and I've already put a few scuffs on it from running in to stuff. Nothing major and nothing was broken.

The picture here is kind of what it looks like except for I got four wheels instead of three. I wouldn't want any tipping over happening!

We did have two "near hit and runs" happen though.

The first one happened when the Scooter Store guy was still here, teaching me how to use the new ride. He told me to get in the chair so that he could "measure me" (which we all know what that means right? That's right, I'm still hot! Oh, that wasn't what you were thinking?) So I got in the chair and then the wee monkey decided that he needed to climb in too. So, I'm sitting there, the littlest monkey in my lap, and this guy is behind me "measuring me" *wink wink* when the little monkey decides that we're going to go for a drive. In reverse.

I tried to explain all of this to the guy but I'm pretty sure that he left here thinking it was me.

The second happened when The Hubs decided that he was going to take it for a spin. He was like a chipmunk on crack on that thing!

The first thing he figured out was how to crank up the speed all the way up and then he just started going around all over the place. Then he would yell "How do you stop??" I would say "Take your finger off the gas thingy!" and he's say "Where is it?" as he was nearing mowing me over. After a few minutes I figured out that the best thing for me to do was to round up the kids and get us all to higher, non-scooter friendly ground and wait until he had his fun.
Of course, I am a little disappointed in a few things. The first would be the sissy "horn" they put on it. They can call it a horn but I would have better luck pulling one of the kids hair to get them to yell than I would with that horn. It's highly disappointing.
Also, there isn't a lot of room for my flames. I was really looking forward to having flames painted on it. But as you can tell from the picture, the red doesn't cover a whole lot.
And the tires are teeny tiny! Where am I going to find rims to find those teeny tiny tires? Maybe the wee man has some cool ones on a Hot Wheels car around here.
But the most disappointing thing about it is the fact that it's mine.
Before I had kids and a hubs, I had a boyfriend who had taught me how to drive a Harley by myself. I was told that it was "HOT" to see a chick driving her own hog.
But try as I may, this scooter will never be a hog. But then again, I'm not that young chick anymore either so I guess we're even.

Oh Yeah! My Sisters, Cousins, Neices, Boyfriends, Uncle Had That!

2008-11-17T10:10:00.000-08:00

One thing that I can't complain about, living in a small country town, is people trying to find some way to relate to your illness. (Hence, the title of this post)
Normally I don't go around telling everyone what's wrong with me, if I can help it. I've always been a private person and I would just rather not tell people who are basically strangers, like the other moms picking their kids up at school, all of the gory details of my walk down MS Lane.
But you always find that one person, I know that every one of you reading know exactly who I'm talking about, who not only completely understand what you're going through but they can relate in some very, extremely, not even "Seven Degrees To Kevin Bacon" sort of way.
Here are just a few of the responses I've gotten when I've told people that I had MS (after them badgering me because TRUST ME, they didn't get it easily!) Followed by what I wanted to say but didn't:

1. Oh yeah! MS. Oh that's some nasty stuff! When I was little, back in the 50's, we would go and visit my aunt who lived in Florida, and she had a neighbor who's daughter had MS. Oh she was such a mess! She had to live with her parents for her entire life cause she just couldn't take care of herself. Isn't that a shame!

*Well, yes, actually that is a shame. But you wanna know what's even more of a shame? The fact that you have no idea that you shouldn't have told me that story! Was it supposed to help in some sort of way? Funny, I don't feel helped.

2. Well, I'm sorry that you have MS but I just want you to know that I donate money every year to that Jerry Lee Lewis Telethon so in a way, if they ever find a cure, I paid for it for you!

*Ummm, thank you? Wrong disease though. That would me Muscular Dystrophy, not even the same initials, but thank you for paying for someone's cure!

3. That's just the worst thing that could ever happen, isn't it? What will you do? How will you go on? What kind of life is that? Not a good one, I'll tell you that!

* Well, up until THIS very second I was planning on actually, you know, living my life. Granted in a different way. But now I guess I'll just send the kids home on the bus and go jump of a bridge. Thanks!

Seriously! What is wrong with people?
It reminds me of when I was pregnant with my first child and still working and everyone, seriously everyone, even people I didn't know would walk up to me in stores and try to touch my belly and then tell me this horrible labor story!
It wasn't exactly the best time to tell me all that stuff! And where is this law written that anyone can touch a pregnant woman's belly, by the way? What, they figure somebody's already touched her so it's ok?
But that's a different rant for another day.
I have just never understood why people feel that they need to so desperately say something that they say these things. It doesn't make me feel better and I cannot believe that this person would walk away from the conversation thinking "Wow, I'm like Dr. Phil!"
The truth is, it's okay to just not say anything.
I don't need to hear the horror stories. I already have enough worry and what if's on my shoulders to last me.
I don't need you to say you're sorry. You didn't give it to me. Nobody knows how we get it.
I just feel like it's part of my life. That's it.

Maybe someone should start making shirts that say "It's MS, No not the thing Jerry Lewis does the telethon for, please don't say anything else unless you want to tell me how great my shoes are."
Cause I still wear great shoes.

Isn't That Innnnteresting?

2008-11-14T17:39:00.000-08:00

So, I had the appointment today with my new local neurologist. I will say that she passed the hub's inspection and got the "She's Not A Quack Or An A%&Hole...YET" stamp of approval. Seeing as he's the active medical proffessional in the family, and he's a really hard one to get by, she did pretty good.
He's the kind that goes in looking for intelligence, knowledge of the disease we're dealing with, the ability to make decisions about said disease, and they also have to be ok with the fact that he's going to be very involved (he's a doc) and will be with me at every appointment. If they pass all of these things, then we will proceed with forming a doctor/patient relationship.
I, on the other hand, go in and base my very factual opinion on things like bad breath, hair styles, do their shoes squeak when they walk (I know this sounds weird but it drives me bananas!), are their pants too short, do they talk with their eyes closed, and do they wear too much cologne/perfume. Oh, and they can't be "close talkers". If any of you were ever Seinfeld fans you would know what that means, but for those of you anti-Seinfeld-ites, it means that they get way too close to your face when they talk and it's really uncomfortable. This is a huge no no if you're anywhere near me. I need my personal space, and if you come into that, you might get hurt.
As you can see, both the hubs and myself base our judgments on highly educated check lists.

One thing I've noticed since being diagnosed with MS and local neuro shopping, is that they seem to think that all of my symptoms started the day I was diagnosed. Have you all noticed this?
Like today, we're going over the usual first appointment snoozefest stuff and she would say things like "Have you ever had numbness or tingling in your feet?" And I would answer "yes" and then she would ask how long ago and I would tell her off and on for two years. She would then look at me, puzzled (and they all have), and say "But you've only been diagnosed for seven months, right?"
So, I'm guessing that I'm completely abnormal in this field right?
None of you had ANY symptoms until the doctor came in and said "Well, it looks like you have MS". Then, on your way out of the doctors office, you fell down twice, you lost the ability to speak, you went blind in one or both eyes, and you started forgetting things like where you parked your car.
Then come the questions like "When did you have your first exacerbation?"
See, this question for me is a hard one to answer. I remember as a teenager that I always got migraines and that one time I couldn't see out of my eye and I do remember it hurting to move my eyes (you know, like look around) but seeing as how I'm 30 now, I don't exactly remember what age that happened. Plus, I used to fake a lot of illnesses so I know my parents didn't take me to the doctor for it.
So, I explain all of that (again) and she says "Well, do you think you were 19?" No, I know I wasn't 19.
"How about 18? Do you think it was when you were 18?" Nope.
We did this until we got to 16 and I said "Yes! You know, I was 16 when I had optic neuritis." I had an epiphany people!

But, like I said, she made it through the hub's check list and I liked her shoes so I think we'll give her a chance. Plus my neuro at Georgetown wants me to switch from Rebif to Tysabri and they have a really cool infusion center there so that will be nice.
Who would have thought that at 30 I would be impressed by nice shoes and great infusion centers?

Just A Few Ramblings From A Foggy Mind

2008-11-13T07:39:00.001-08:00

I swear, lately I have been in such a fog! I just wander around, forgetting things, wondering what it is exactly that I'm supposed to be doing, and always getting distracted. It's like I suddenly have aquired the attention span of a gnat. "Ooooh, look, something shiny!" and away I go. I'm sure for a lot of you who have had this wonderful disease longer than me, this is nothing new to you. For me, it's infuriating. I've tried making lists but then I lose the first list so I start a second and on and on until I've paid the Post It employees salaries for an entire year.

I don't know if any of you have been over to visit my other blog, but it's called Rambling Thoughts and I named it that for a reason. That's usually what I've got going on in my head. Just rambling, random thoughts floating around up there and I mostly just type down the dialog that's going on in my head. I just want to warn you that you'll get a lot of rambling from me. It happens. I can't help it. Deal with it. Everyone will be happy.

Oh, I wanted to say that I was surprised by the comments for yesterdays post. While I'm glad to hear that most of your all's friends have stuck by you, I was really expecting more to say that they had been through what I'm going through now with the amazing disappearing friend show. I will say that the friends that have stuck around have been so amazing through all of this and are always willing to lend a helping hand. I guess I just wasn't expecting that part of my life to change much.

In other news, I have another wonderful blogger to thank for welcoming me to the MS Blogging community. Lisa Emrich from Brass and Ivory wrote a post welcoming me and she only asked for a couple of things in return! :)

Thank you Lisa and all of you for making me feel welcome. I know that none of us asked to be here but it makes it so much better that we're in it together than dealing with it alone.

You can also visit Brass and Ivory by clicking on the link in my blog roll (which she only hinted a little that she wanted me to put her in) I saw something on there about how she's going to take us all to a carnival or something so that should be fun, right? I love carnivals!

Also new on my blog list is Ben at Did You Know That Montel Williams Has That? First of all, I loved the name of his blog since I've heard that question a lot since being diagnosed and he also left the most interesting comment in yesterdays post and this is just a little part of it:

"So at the risk of sounding all Charles Manson here...I'm gonna add you to my page as well. Let me know if that is weird or whatever, but I'm gonna do it. There aren't too many dudes out here for some reason. That's cool though, I guess I'm just the sensitive type."

Ahh, Ben you had me at "at the risk of sounding all Charles Manson". And if you haven't been over to visit Ben's page, or Bald Ben as he calls himself (hmmm, I wonder if that means he's bald?) you totally should because I did yesterday and he's really funny. And he's right, I haven't seen a lot of guys out there and it's nice to get a guy's point of view for a change!

One last rambling before I head off into the fog. I have another appointment tomorrow with another new neurologist. See, I have a neurologist at the University of Georgetown Hospital who is amazing. The only down side is the drive. It takes three hours to get there, or more if D.C. traffic is bad. The hubs and I both agree that it would be good for me to have a local neuro established if anything should come up.

I've been down this road about four times now. There are a lot of quacks out there calling themselved Neurologists! There was one who, on the first visit, saw me walking in with a limp, and said "You don't have to walk like that. If you have disability papers just give them to me. I'll fill them out." Nice.

Number Two told me that none of my symptoms were from MS. At the time I had right leg weakness, foot drop, trouble with my speech, and fatigue. #2 says that MS didn't cause any of those things. He says that I was just really stressed out. He wanted to send me out of there with some pretty heavy duty antidepressants and a lot of Xanax. Movin on.

I have some hope for this one though. A woman that I've been exchanging emails with for a while sees her for her MS and says she's great. We'll see. Wish me luck!

Now I'm off, into the fog, to look for something shiny!

Hey, Where Did Everybody Go?

2008-11-12T07:34:00.000-08:00

I've started to notice that a lot of my friends are starting to disappear. It's like this widespread epidemic!
From a medical point of view, I knew that my life was going to change when I was diagnosed with MS seven months ago. Hell, it had already started changing before I was diagnosed. I was worried about things like losing the ability to walk and see. I was worried about how I would go on to be a stay at home mom if I could barely take care of myself. I still worry about that now.
My MIL told me that she has a friend with MS and he says that it stands for "Many Surprises" and I think that's pretty fitting. Atleast in my case, I never know how I'm going to wake up one day to the next.
What I didn't expect to change was how people who knew me before MS would start to look at me differently. They talked to me in a different way. I had some who would try to help out by asking me everything about MS and then I had some who figured that they would just ignore it all together.
The thing was..I used to be a pretty fun person to be around. I loved to laugh and most of the words that came out of my mouth had a sarcastic tone to them. But suddenly, to my friends, I'm this broken, fragile little person who can't be toyed with.
I've had some that have stopped calling all together. Two of my closest friends used to call everyday and we could spend hours on the phone. Now I haven't heard from either one of them in months.
But I will say, I have found some funny sides to this kind of thing.
The hubs has a Great Aunt who is in her 90's and lives in Connecticut. She's a very interesting lady, spent her life working for the FBI but she won't tell you what she did, at 80 she wanted a new car (new car to her meant used car new to her) but the one she wanted was a stick shift so she taught herself how to drive it. She's never been married or have any children and she's not exactly the kind of person to pity someone.
During a phone call, my MIL was talking to her and Aunt said "So where is Tracy? Is she around, could I talk to her?" My MIL told her that I had just gone upstairs to use the bathroom. Aunt did this tisk, tisk noise and said "Oh that poor thing."
When I got on the phone I said "I know, right? You'd think that they could fix something! I mean, I have MS and I still have to go pee..where's the justice in that?"

See, I'm still me.
The thing is, I'm a little more dangerous now. Think about it. Most of the time I use a cane. The cane is long. One time, the hubs said something and I wanted to hit him but he was out of reach so I whacked him with the cane. The hubs says that the cane hurts.
And I just found out yesterday that I'm getting my motorized scooter. Just think of the damage I'll be able to do to someone with that puppy! And I can double it if I hold the cane while driving the scooter. No one is safe!

I'm not saying that it doesn't hurt that these people have disappeared from my life or some of the ones who have stayed look at me differently. I'm just hoping that if I keep showing them that I'm still here, they'll get it. And the ones that are gone, I guess they were in my life as long as they were supposed to be, right?

It Appears That I've Been Brought Out Of Hiding

2008-11-11T11:12:00.001-08:00

I don't usually get a lot of comments on this blog (although who am I kidding? I don't get more than 11 a day on my other blog either!) so imagine my surprise when I signed on to this one last night and saw that I had, like 10 comments for my last post! I just figured that maybe all of my blog buddies followed me over here and started commenting here too but to my even more surprise, all of the comments were from people that were new!

So, for all you new people visiting the zoo, I'd like to say

Welcome and Thanks For Comin'! Feel Free To Take Your Coat Off And Stay A While! But Don't Plan on Stayin' Too Long Cause' You Might Mess Up My Nap Time!

I've actually been stalking a lot of your all's blogs lately but I haven't been leaving a lot of comments out there in the blogosphere. I'm still new to this whole MS thing and I didn't want to intrude.

But today, when I went stalking, I found that Brain Cheese did a whole post on me and she welcomed me "Onto The Short Bus" (which for some reason cracks me up every time I hear or read that!).

I might have left a teeny tiny little comment about wanting my MS blog put on her blog roll but I totally wasn't expecting all of this! She even did a blog review, which she says she never does because she doesn't want anyone to review her blog.

So, as you can tell, I was feeling pretty happy. My ego was a little puffed up. Tracy was now welcomed onto the short bus. Rock on!

Then I read in the Brain Cheese Comments that one Miss Lisa Emrich wrote this:

" I was planning on announcing/welcoming Tracy tomorrow...but now.... well, humphf... I'll have to find something else"

What? Is there an almost fight going on over me? People, people, listen to me, there's totally enough Tracy to go around! Lisa, don't you go finding something else! Announce me anways! And as I said to you in my reply comment, if you need me to act all surprised, I totally can do that!

I started a blog list and have put some of the ones who commented up there. I'm almost certain that I missed some of you. Please don't take that personally, as I tend to have the attention span of a gnat most days (Ahh, the joys of MS). Plus, I kind of got sleepy and there was this whole thing with a chicken following me around but that's a story for another day. The point is, if I missed you or I didn't miss you and you just want your blog up there, leave me a comment!

And, seriously, thanks for the welcome. I'm still not exactly sure how I got to be on the short bus. I don't know if you grabbed me off the street and knocked me out and when I came to welcomed me, but all the same thanks!

I wanted to share with you all this kind of awesome comeback that I had the other day. (yeah, I'm kind of proud of myself, so what?)

Have you all noticed that when you have an illness or disease like, oh I don't know, MS and you tell someone and you see that moment when it hits them that they have no idea what to say to you now? Then this switch flips and it's like "I must throw as many analogies at her as possible" and then you're hit with all of these sentences that make no sense and half don't even pertain to you? Well, this is one I had the other day.

Random Mom at Kids School: Oh, MS huh? Wow. Well, I guess that Forrest Gump was right. Life really is like a box of chocolates. You never know what you're gonna get.

Me: Well, I mean, I guess if the box of chocolates was the kind filled with the gross goo inside and you knew that every one you bit in to was going to be disgusting and you'll want to put it back in the box but you totally can't, then yeah it's a lot like what I'm going through with MS.

Blahhh

2008-11-08T14:33:00.000-08:00

The title really says it all. For the past three days I have been..well... blahhhhhh.

This is what infuriates me about this disease. Exactly one week ago (well, one week and a day..ok it was Halloween for crying out loud people!) I was hitting school parties and then that night the hubs and I took all three of them trick-or-treating and I was the one that the kids had to say "Mommmm, it's time to goooo!"

Then exactly one week ago (and yes I do mean exactly one week, wait..today is Saturday right?) I was baking a cake and getting ready for a date with a hot guy for our 9th anniversary. We went to dinner and talked and it was all wonderful.

And this week?

Blahhh...

I seem to be starting another flare up. My speech is slurred and I stutter a lot and I'm exhausted and my balance is way off (and by way off, I mean that when I think I'm standing up, I'm actually not). I've basically slept for the last three days straight. Luckily, the wee man is a great napper and stayed right beside me. And now the hubs and my mom are here for reinforcements.

I just hate being like this. The hubs keeps doing the laundry (which is really a wonderful thing or we would all be naked) but then he dumps the baskets out into a chair in the living room/our temporary bedroom and it becomes the Mountain of Doom. It's my Mt. Everest if you will.

I know that I'm lucky that he even does the laundry but would it kill him to fold something now and then?

Oh, right, "Real men never fold laundry!"
So, here I am, stuck in bed, feeling like crap, and Mt. Everest is slowly growing up in front of me.

Imagine this but made out of laundry. Oh, and without the snow of course.

What to do..what to do...

For now, I think I will just pull the covers up over my eyes and go back to sleep. Everest will always be there when I wake up I'm sure.

Distance Means Nothing

2008-11-06T08:25:00.000-08:00

One person that I feel truly lucky to have in my life is my mother in law, Mary Jane. She's one of those women you wish you could be like, who tells you like it is even if that's not what you wanted to hear, and she gives you encouragement (although at times it may seem like she's just telling you what to do).
When I told her that I had MS she set out to learn everything she possible could about my disease. She's been going to an MS support group, she get's newsletters and emails, and she sent the kids a DVD about MS that eplained it to them in their terms. Plus it was a cartoon. You can't go wrong with having the kids watch a cartoon.
She's always managed to show up when we need her most and help in ways you can't imagine. And the funny thing is, she lives in Arizona. It's not exactly a quick car trip over to West Virginia from her house!
The last time she was here visiting, we went to Target. I wasn't doing too well and my legs were giving out a lot which lead to me falling a lot. When we got into the store to get our shopping carts, we had a conversation that went a little something like this:
MJ: Get one of those motorized scooters for yourself.
ME: Oh, no. I don't think I need one today.
MJ: Get one of those motorized scooters for yourself.
ME: No, I think I can just hold on to the buggie and shop. I'll be fine.
MJ: (a little more stern) Get a scooter!
ME: Ok fine!

And then I got in the scooter, end of discussion. The thing is, she and I both knew that me being in the scooter was what was best for me, but my pride wasn't allowing me to take that first step. So, she made me. I have a feeling that the conversation could have gone on forever like that if I hadn't given in. Who knows? We could still be in the front of Target, months later, arguing about how I was going to get around the store.
When I told her that I wanted to start journeling but I couldn't find any pretty Journals to write in, she sent me about 15 journals from her business. They were all beautiful, different shapes and sizes. I'm now set to journal for the rest of my life.
We tak by email several times a week and we try to talk on the phone atleast once a week but, of course, life sometimes gets in the way. But with all of that, her living across the country, only talking through email, etc, I've never felt closer to her than I do now.
I guess a "support system" doesn't have to be right there at your door to really be of support.
Thank you Mary Jane, from the bottom of my heart!
And I promise to always "eat my peas!"

Can I Turn A Kick To The Ego Into A Hot Ride?

2008-11-02T11:58:00.000-08:00

I went to see my neurologist at the University of Georgetown last Wednesday and, for the most part, it was actually a very productive meeting.

Since I'm still managing to trip over air a lot of the time, he sent me home with an order for a four wheeled walker with the seat thingy built in (and yes "seat thingy" is not the proper term but you're in Tracy Land now so that is what it's called) and another order for a motorized cart. While I understand that I probably, maybe, definately need these things, it's still a bit of a kick to the ego, you know? Cause there's nothing sexier than a 30 year old woman yelling at her children from her motorized cart.

Or something like this could happen, which for me is very likely:

You would just have to imagine a younger woman with great shoes and an awesome handbag instead of the purple sweater thing that woman is wearing but our facial expression would probably be the same.
My brother has already offered to put some big tires and rims on it for me. And he does have a friend who does auto painting so I could have him paint it pink and maybe put some flames on it or something. That's just a few of the advantages of living in West Virginia. People know how important it is for your vehicle to not only look good but to be prepared for any unexpected off roading trips. I'd also like a horn for it that's really loud, unlike the ones they have on the scooters at places like Target. They claim it's a horn but all it does it a tiny little "beep".

I think this one would suit me pretty well. Not only would it say "Hey, I'm a badass" when not in use, but it also claims to be extremely loud. I bet I could clear an entire department store out with one blow from this puppy.

Although, I found this picture of a walker here that might work out for me:

That thing is ready for an off road adventure anytime. And just look at those shiny rims. Honestly though, I hate this. I had a moment where, as I was sitting in the doctors office and he and my husband were talking about how badly I needed this things, and I found myself thinking "When in the hell did this become my life?" I keep hoping that this is some kind of bad, really bad, terrible, horrible, awful, realistic nightmare that I'll wake up from soon and all of this will be gone. I'll tell myself "It was just a dream" and I'll get out of bed without any pain and I'll go in the kitchen and fix my coffee and not have to take ten fricking pills and I'll go about my day the way I used to.

I guess I'm just having a "poor me" kind of day. I've never asked "Why me?" I know there's no rhyme or reason to why I got MS and I wouldn't wish it upon anyone else in the world.

I guess there are just days where I don't feel up to fighting the monster.

This One Is Gonna Be An Angry One...Just Thought I Would Warn You

2008-10-26T07:10:00.000-07:00

I'm a bit aggrivated...not the right word...miffed? No...mad...getting closer...

Ok, I am way kind of definately, whole heartedly PISSED OFF!

And what am I pissed off at? This mother frippin disease that shows it's ugly head when I least expect it, making my body defy me, let me down, disappoint me in ways ones body should never do.

Let me try to make some sort of sense out of my ramblings for you.

Think of what you do, say, on an average morning from the moment you wake up to the second you walk out the door to work, take your kids to school, go to Dunkin Donuts and then come home and eat two dozen jelly filled donuts, whatever it is you do.

Now, imagine it with these little gems added in:

1. You husband, wife, gay lover (there is NOTHING wrong with that), dogs, children, etc. has to come and tell you to get out of bed about fifty times after the alarm has gone off for twenty five minutes waking everyone up in the house but you because of all the meds you have to take for you illness.

2. You finally get up, still in a fog from the meds, and have to get everyone dressed, pack lunches, fix hair, feed the monkeys, and get them out the door and into the super mini van before 7:15 a.m. to get them to school on time.

Add in the fact that your right leg really doesn't work so you're dragging it behind you like the Hunchback of Notre Dame and you have to bring your cane with you everywhere you go.

It's all enough to make even the most sane of people go crazy. And as I'm sure you all have figured out by now, I am not one of the most sane of people.

One of my main problems is that I'm stubborn. Really stubborn. To the point of being stupid.

For so long, I have fought this illness and the limitations it's put on me.

I have what my therapist calls a case of the "I shoulds".

I should be able to carry a laundry basket up the twelve steep farmhouse steps and put it away.

I should be able to go back up the stairs to get my own clothes.

I should be able to clean the house, make dinner, make it through the day without a damn nap, go to the grocery store, volunteer at the school, go on the school field trips with my kids.

I should, I should, I should.

In turn, I end up exhausting myself and just plain screwing myself.

Friday had been a crazy day. I took the kids to school, came home and put away loads of laundry that had been sitting there taunting me, bathed the littlest monkey, showered myself, and then had to get back in the car and drive and hour to two doctors appointments for myself. Then it was off to the pharmacy and I made it back in town just in time to surprise the girls by picking them up from school instead of them having to take the bus home.

Busy day. No nap. My butt was kicked.

But did I stop? Oh no. I was being the supermom.

There was dinner to be made, homework to be done, baths to give.

The hubs kept telling me "Don't over do it. Sit down if you need to, I can take over whenever you need me to."

In my head I thought "Oh, you're very sweet, but I've got this. I should be able to do this."

By the time all of the things were done, I was exhausted. I had overdone it. I refused help when I should have said "Oh God, yes please!"

But by this time, my stubborn self kicked in and said "Just one more trip up the stairs for your pj's and then you can relax. On more trip up those stairs. It's only 12 stairs."

I made it up the stairs but by the time I got there my muscles in my legs were weak and shaking. But I didn't stop, oh no, I kept going. And that's when it happened.

My body said "Ok lady, enough!" And I fell.

It wasn't a big fall. I was coming out of the bathroom and fell on a part of the floor that is waiting for carpet. I fell to my knees and skinned them pretty good, hit my arm and my head on the wall, added a few new bruises to the collection that I have going, and really beat up my pride.

The hubs came running up the stairs, he knew what had happened. And he found me there, in the floor like I had landed, crying like a little baby. I wasn't crying because I was hurt physically, I was crying because of the "I shoulds".

In a way, when the hubs got there, it was kind of funny. He kept going between asking me if I was ok and yelling at me for pushing myself and not asking for the help that I so needed.

It was:

Are you ok? God that was a loud one!

WHY DO YOU KEEP DOING THIS TO YOURSELF?? YOU JUST KEEP PUSHING!

But are you ok? Is anything broken? Are you bleeding anywhere?

WHY DIDN'T YOU ASK ME TO GET YOUR CLOTHES? YOU DIDN'T HAVE TO CLIMB THE STAIRS! I WAS RIGHT HERE!

But seriously, are you ok? God you scared the shit out of me! Are you ok?

He ended up going to get my pj's and I ended up sliding on my butt back down the twelve stairs that I had just climbed up.

Remember when you were a little kid and you'd slide down the stairs on your butt? I used to do it at my grandparents house all the time. Thump thump thump. Then I'd run back up and do it again. It was so much fun.

Now, as an adult, not so much. Now, I feel every thump through my entire body, it gives me an atomic wedgie, and I wasn't doing if for fun, I was doing it because I couldn't walk myself back down.

This is what MS has done to me and my body. My body and I are no longer on the same team.

Thank you MS.

Maybe I should get one of these put in the house. I wonder if my insurance would pay for that?

Don't Mess With Naptime...Or Else

2008-10-23T09:13:00.001-07:00

As I've mentioned before, fatigue has been one of the main and most problematic symptoms for me with my MS. Before I was diagnosed, I would wake up at 8 a.m., go for two hours, take a two hour nap, go for two more hours, take another nap, go for a few more hours, then go to bed. That was my day.
After my diagnosis, I was given some meds that help fight the fatigue and for the most part, they have made a huge difference. I am almost a half of a functioning person again. I do still need a nap but it's just one and it's only and hour and a half to two hours long. Not bad.
With the home renovation going on the past five months, the workers started to understand how important my having a nap was. If I got a nap, I was happy and chipper in the afternoon. No nap, watch out for the swinging cane. And since they're nice guys, they would work a little more quietly so that I could get my nap. I trained them well.
One group of people that I cannot get trained, though, is DirecTV. I can't tell you how much of a pain in my ass these people have become! All we want is for them to hook up the boxes in the new parts of the house and move one. That sounds simple enough right? Well, three times these people have come out, during naptime, only to find out that their workorder didn't say "You will actually have to work" on it and they all left without doing anything.
So, we rescheduled again for today. The hubs even made sure to schedule the guys to come before naptime so that I wouldn't kill them. The hours that they were supposed to show up were from 8 a.m. to 12 noon. I could handle that.
At 11:30, this really rude lady called from DirecTV to tell me that the guys are running late and they will now be here anywhere from now and between the hours of 2:30-5:30. Which, how in the world is that even a time frame?
I got a little, for lack of a nicer word, angry. I was going to have my nap today damnitt!
So, I taped a little note to the door for the guys for whenever they do decide to show up. It looks a little something like this:

I sure hope I hear them knock!

Sometimes You Just Gotta Do It, Even If Spite Is The Only Reason

2008-10-20T07:51:00.000-07:00

Before MS showed up and changed my life, I used to do a lot of things. One of my favorite things was baking. I used to bake all the time. Seriously. I was one of those people who went to Costco, the bulk food heaven on earth, and bought the ginormous bags of flour, sugar, and chocolate chips.
I remember one time, as we were leaving Costco with my baking purchases, the guy at the door who checks your receipt said "Oh, you have a lot of baking stuff. You must have a baking business." I smiled politely and said "Nope, I'm just one of those people who is contributing to the ever growing obesity population in the country." Then I took my reciept, left the man standing there with a blank look on his face, and pushed my cart full of baking goods to the car.
Since the MS monster decided to show it's ugly face, one of my main problems has been fatigue. I've had months pass the I don't remember because I slept through them. Almost literally.
Today, I decided that I was no longer going to cower in the face of the monster. I was going to bake something if it killed me! I figured it wouldn't hurt me since i've lost almost 100 lbs. because of the meds the doctor has me on. I want a homemade cookie damnitt!
That's what I did too. I baked almost three dozen chocolate chip cookies. Remember the kind your mom or grandmother used to make that you knew you couldn't buy in any store because these were made with love? That's the ones I made.
So, I did it. I'm exhausted now, but I did it. The way I look at it is, sometimes, you've just got to do it, even if the only reason you've got is spite.

The Value Of A Good Therapist

2008-10-19T06:24:00.000-07:00

The day I was diagnosed with MS, this change started happening to my so very extremely nice all the time personality. And the more the MS started to effect or change my life, the worse it got.

I was...well for a lack of a better word PISSED. I was so pissed off. At so many things really.

I was pissed at the doctor who told me that even though I definately had MS, once I started the Rebif therapy, I might not even know that I have it for ten years or more.

Really Doc? Because I've known that I've had it every single day since, thanks.

I've been pissed at the way I see my illness effecting my family. My husband is always watching me like I might shoot off into space if he takes his eyes off of me, my kids were terrified that I was going to die and they were also sad because the mom who used to be "Supermom" now couldn't get out of bed long enough to make them breakfast.

I was pissed at the constant pain that I've been in, pissed as my leg for not letting me know when it's going to decide to stop working, pissed at falling down, at fatigue, at the neurologist, who was supposed to be an MS specialist, who kept telling me that MS didn't cause pain, that my leg had full strength, and that when I started talking like Forrest Gump that wasn't MS either.

That's another thing I've been mad about, I never know what's going to happen when I wake up one day to the next. Honestly, one day I took a nap with my two year old son and I had been feeling different that day. I couldn't figure out what it was, not worse. Just tired. When I woke up, I couldn't speak. Then when I could get words out my speech was all broken and I couldn't complete big words and sentences were impossible.

The next day, my husband drove me to this "specialist" who told me that it wasn't my MS causing my speech. It was stress. I thought, but couldn't say or I totally would have, "STRESS? Really? Cause I have three kids, a farm, a house to run, and all of that was there before and I never started talking like Forrest Gump before!!!" His solution was to up my antidepressant (that I have to take because the Rebif is known to cause depression) and give me a script for Xanax. My husband basically told him to stick the scripts up his bum and we left. I haven't seen him since.

I honestly felt like I was drowning. MS had changed everything about my life, it made me feel like I was on the outside of my life looking in, and I knew I couldn't deal with all of this anger on my own. So, I went to see a couselor and I am so glad that I did.

She's been helping me deal with all of this anger and has helped me to find ways to still be involved with my family without wearing myself out. I've been seeing her now for almost five months and it has made such a world of difference. I'm not as angry anymore, although I do still have my moments of rage at this stinking illness, but I'm dealing with it. I can see the difference it's made in me and in my family who no longer feel like they're walking on eggshells around me anymore.

I highly suggest counseling or therapy to anyone going through this. Therapy isn't just for crazy people, which is what I always thought before.

There's nothing more valuable than a good therapist!

Welcome To The Zoo

2008-10-03T13:26:00.000-07:00

Hi, My name is Tracy and I have MS {ahem, this is where you would all say "Hi Tracy" in your most somber AA voices...What? Nobody wants to play along? Fine.}

Well, I guess I'll try it again.

Hi, I'm Tracy. I have three kids who are insane monkeys most of the time. More often than not, I feel like the zoo keeper instead of the homemaker. No, seriously, I'm told they're great so that's good right? My oldest, who was probably the biggest surprise I've ever had in my entire life, will be 9 soon but she acts like a raging, pms-ing, 16 year old most of the time. My favorite thing that she says is "I want to be treated like an adult!" So I'll treat her like an adult and then she gets mad and stomps off to cry in her room. As I watch her go, I think "Gee, if only we could all choose when we want to be adults like she can."

My second child, also a girl, is 7. She was probably the second most biggest surprise of my life since my first baby wasn't even a year old yet when I found out she was on her way. She's an interesting kid. I'm pretty sure that she is a reincarnated 80 year old woman from Jersey who used to smoke a lot of Pall Malls. Actually, I'm pretty sure that Em has lived a lot of passed lives because there are times when she starts talking in a brittish accent, then suddenly she's southern sounding like Scarlett O'Hara. But the Jersey thing has lasted the longest. Plus, she always gives you the feeling that she's way smarter than you and she's just tolerating you until she can reach world domination.

Then there's the wee-man. My little two year old tazmanian devil. I swear, I thought I knew what I was doing with this whole mothering thing until I had a boy. Geesh. He never stops moving, what he can't climb, he eats, and he's more than happy to piss his sisters off. He also has times when he's cuddly and sweet. Usually he's sleeping during those times but they still count.

I'm not going to give you the long, detailed road of how I came to be diagnosed with MS. I'll just give you the important stuff and we'll build up from there.
Here's the low down. Around the age of 16 or so, I remember having a week when I had a horrible headache, a blind spot in my right eye, and it hurt just to move my eyes. I didn't really mention it to anyone and after a week it went away. Problem solved. I just assumed that I had taken some bad drugs or something. I know now that what I had was Optic Neuritis and that was probably my onset to MS.
Years went by, a marriage happened between myself and my wonderful husband, and lots of babies kept appearing out of nowhere (and by nowhere I mean my whooohaaaa!) and life went on.
Over the past ten years, I've had times when I was a little "extra clumsy" and I would trip over random things, like oh, say, air, but I always managed to explain these things away. It doesn't do for mother to get sick afterall.
Two years ago, after my son was born, I started having a lot of migraines. Like three to four crippling migraines a week. I had the blindspot, sensitivity to light, smell, noise, and people. I started seeking help from neurologists for these migraines and since none of them knew what to do with me but were to arrogant to admit it, they would just write me a prescription for some pill that would do nothing and then send me on my way.
About eight months ago, I had a migraine that was so bad I ended up in the E.R. The next day I followed up with my family doctor who was an elderly, smalltown doctor that I basically used for antibiotics. He said "Hey, you know, you've never had an MRI. We should maybe get one of those." So, I did.
Two hours after my first MRI, my family doctor called me to tell me that I needed to see a neurologist ASAP. That I had 19-20 lesions in the white matter of my brain, consistent with MS.
My life changed at that exact moment.
I do have another blog that I've had for about four years called Rambling Thoughts of The Neverending Mind but it's more of my funny, everything is peaches and cream and everyone is shitting snowcones kind of blog. I didn't want to weigh it down with MS stuff so I decided to start this one.
I'm hoping to find some people who also have MS. Right now I only have one person that I exchange emails with and I would really love to hear from more people, compare some notes, curse the illness, whatever hits our fancy.
So, Wecome to the Zoo!