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.