Saturday, July 4, 2009

Holiday Memories And A Little Magic

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

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

Thursday, July 2, 2009

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

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

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

Thursday, May 21, 2009

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

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

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

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

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

Tuesday, May 5, 2009

UN-Happy Anniversary To Me

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

"What Is Your Idea Of Bliss?"

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

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

Thursday, April 23, 2009

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

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

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

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

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

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

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

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

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

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

Tuesday, April 14, 2009

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

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

Thursday, April 2, 2009

The Picture

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

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

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

Hope you all like it.

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

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.

Wednesday, March 25, 2009

I Found A Little Something

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!

Sunday, March 22, 2009

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

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!"

Friday, March 20, 2009

Sometimes The Truth Can Be So Refreshing

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.

Sunday, March 1, 2009

Just Wanted To Make Sure You're Aware

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.

Thursday, February 26, 2009

One Of Those Days

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.


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?

Wednesday, February 11, 2009

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

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!

Friday, January 23, 2009

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

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 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!

Tuesday, January 20, 2009

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

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!

Wednesday, January 14, 2009

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

You all warned me, but did I listen?

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


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!

Wednesday, January 7, 2009

When A Month Lasts An Eternity

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!

Friday, January 2, 2009

Oh Geesh, This Can Be Hard Work!!!

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.
Me: Hey, honey?
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.