Thursday, November 27, 2008

Carnival of MS Bloggers #24 - Thanksgiving Edition

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Hope, Thanksgiving, and Community

Once upon a time there was a little girl who had MS. She lived in Indiana with her Auntie Vi, Uncle Arthur, and Mother Rosie. She loved her life with her family, but dreamed of a place faraway, a place full of adventure and a cure for MS…some place over the rainbow.

One especially dark night, there was a tornado that blew the little girl up, up, and away. When she awoke, she was in a very strange land and she was afraid. She saw a sign: “Welcome to the Emerald City, Seattle!” Before she could think about that, a blue seagull flew over her and sat down in front of her.

“Hello, little girl,” spoke the blue seagull. A talking bird! How wonderful, the little girl thought. The blue seagull twisted his head all around until he was looking at her upside down, “What’s your name?” The shy little girl cleared her throat and said softly, “Diane?” The blue seagull’s head spun all around like a top before screeching to a halt, “Are you telling me or ASKING ME?”

Then muttering something through his beak, he flew away, leaving Diane all alone again. She grew frightened and wondered aloud, “What should I do? Where should I go? I have MS and I’m scared.”

“Follow the yellow sick road!” Diane jerked her head to the right, looking for who had said that. “Yes! Follow the yellow sick road!” shouted another voice, but where were the voices coming from? So many voices began screaming the same command: “Follow it! Follow it.”

Diane saw before her a path of yellow. With each step she encountered an odd sensation: vertigo, stars in her eyes, numb feet, weak hands, piercing migraines, depression, and a heaviness in her legs. As she walked further, she saw a corn field ahead and hoped there might be a cob to snack on. If only she could make it one…more…step… suddenly Diane felt a soft tap on her shoulder.

Standing behind Diane was a beautiful woman in a billowing dress holding a wand with a bright white star on the tip. “Dear, where are you headed?” spoke the gentle lady.

“I’m looking for a cure for MS,” said Diane with great authority. “WHO are YOU?”

“I am the good witch of the north. The person you seek is the Wizard of Plaus; he is very plausible.”

“How do I find him?”

“You must stay on the yellow sick road. But be very careful along the way,” said the good witch as she started to be blown upward, “the wicked witch of the west coast is never far away. Stay on course, my precious child. And good fortune to yooooooou,” her dress blew up like a sail and she floated into the clouds as silently as she had appeared.

“No! Don’t leave me all alone with MS!” cried Diane.

“Oh, my sweet, dearest, ugly, little slime. Your MS is my delight. T-Cells! Take flight! Attack her nerves! Eat her myelin.” Rubbing her mole infested rumpled hands together, the wicked witch of the west, gazed into her foggy magic ball as the winged T-Cells and viruses began flying out the cracked windows of her crumbling castle walls. With her 13 inch fingernails she grabbed a passing T-Cell. “And don’t forget her spinal cord and brain.”

“BREAK THE BLOOD BRAIN BARRIER!” they screeched as they flew.

Diane fell near the corn field. Looking up at the pastel sky, two large eyeballs stared back at her! “AHH!” she screamed to an echoed “AHHH!” from the scarecrow attached to the eyeballs. “Who are YOU?” asked the scarecrow. “I’m Diane. I need to talk to the Wizard of Plaus. I need a cure for MS.”

The scarecrow helped her up. “Mrs? Miss?” “No, no, MS—Multiple Sclerosis. It is a disease of the central nervous system.” The scarecrow frowned; his stitched rag mouth turned upside down, “Oh, the brain. If I only had a brain. I’m going with you and ask the Wiz of Plaus for a brain.”

Off the two went, both falling and getting back up as they moved, neither expecting what jumped out in front of them---a lion! He roared so loudly that the straw blew out of the scarecrow and all that remained was his hat and two button-eyeballs. “Look what you did!” shouted Diane.

The cowardly lion hit his head with his giant paw. “Aw shucks. I’m so sorry. What was I thinking? You both came upon me out of nowhere and scared the fur balls out of me. What are you doing way out here?”

The scarecrow’s stitched rag mouth started speaking. “We are going to see the Wizard of Plaus. She wants a cure for MS and I want a brain. Now help put me back together. With that said, he directed the lion and Diane exactly how to build him back together. “I am, am, am, I mean if you don’t mind, I um, would like to, uh, go along and, well…well…”

In unison Diane and the scarecrow impatiently barked, “Well, WHAT?!”

With his tail between his legs, the lion said meekly, “Ask for some courage?”

After continuing along their way, the troop of three soon saw an enormous structure rising high into the sky, up into space like a needle. The Emerald city’s Wizard of Plaus was only a skip, or twenty, away. SQUEEEEEEEEEL

What was that, they wondered. KEEERRR-PLUNK. In their path a tin can fell. “Help me. Please help me.” Diane thought--- what next? A talking scarecrow, a cowardly lion, and now a talking tin can? A glance to the right showed that in fact this was the head of a tin MAN! The scarecrow took off running, returned with an oil can and began to oil and reconnect the tin man’s head.

“Oh, that feels chicken-biskets good! Thank you. Who are you wonderful creatures?” asked the well-oiled tin man. After introductions were made the troop became four. The tin man wanted a heart. But before they began to skip, the flying T-Cells and viruses had arrived. They swarmed Diane, causing her body to stiffen like iron.

“Lion, swat them!” commanded the scarecrow, “Tin man, put your cool metal on her. I’ll give her my stick arm to walk with.” The tin man wrapped his cool arms around Diane and the lion bit and swatted the T-Cells until they gave up and flew away.

The wicked witch of the west coast was furious at her immune system “mission unaccomplished” and she took a step outside to shoot her returning warriors with Solu-medrol; but the Emerald city rain dealt her a deadly blow. “I’m melting.” The Seattle rain melted her away forever. Her anger blinded her to the effect fresh rain had on her.

“We are here,” said the troop as they eyed the huge tower. A guard with a bad haircut blocked the entrance. “Don’t worry,” said the tin man, “he is the bill and gates keeper; just throw apples at him and he runs away.”

“WHO GOES THERE?” bellowed a booming voice from the top of the space jousting needle. The lion began to shiver and the scarecrow turned to leave, stopped only by the tin man. Diane spoke, “I want a cure for MS. Scarecrow wants a brain, Lion wants courage and Tin Man wants a heart.” “GO AWAY” Go away? That’s it? “Look, an elevator, let’s go to the top,” said the scarecrow. Up they went until the doors opened and there, standing with a microphone was: Madonna.

Diane couldn’t believe her eyes. “YOU are the great Wizard of Plaus?! You are just Madonna!”

“Excuse me? JUST? I am a music legend, a cultural icon. Yeah, I’m a frigging wizard too AND I write children’s books. I’ve been watching you. You are all jerks. Lion. You want courage? YOU’RE A FRIGGIN’ LION, King of the Jungle. You gave an arse whuppin’ to those T-Cells. Tin man, woe is me; you want a heart, WHAT ARE YOU A VIRGIN? You hugged Diane when she was down. You cared about her. That takes heart, you dope.

And YOU, scarecrow, you want a brain? WELL JOIN THE CLUB! You figured out how to save Diane and fix tinny and put your own SELF back together WITHOUT YOGA OR BOTOX. You bowlbeepers already HAVE what you want.

The lion let out a roar that shook Mt. Rainier; the tin man felt his heart beat; the scarecrow straightened his hat and stood tall…Diane walked slowly up to Madonna. “What about me? Where is my cure?”

Madonna took off her cone bra and put her hands on her hips. “Listen Kid, right now there is only one cure for MS that’s plausible, and the good witch gave it to you the moment you landed in Plaus; and that is hope, a belief that if you just follow your dream anything is plausible. Anything is possible."

Anything is possible. Anything is possible. “Diane? Diane?” “Auntie Vi?”
“Time to wake up. Here, let me help you with your hair. There’s a piece of straw in there…”

A few discussions floating around the MS Community blogosphere:

Lanette returns from her wedding in Jamaica. Yeah Mon, photos included.

Shauna visited Jack's Lake and saw deer tracks and an old bridge.

Lisa discussed Spasticity, Disabilty, and Solumedrol at Multiple Sclerosis Central.


Nadja, the Denver Refashionista, is Cured!! No, not that kinda cured. Go read.

Anne thanks everybody for More Success!! in raising funds for Herrad's cushion. I thank you too and Herrad received the funds yesterday. Whooohoooo!!

Richie, Herrad's Sweetie, shares what a typical day entails for a caregiver. Thank you Richie for all that you do.

And Serina shares a favorite Christmas Story about Big Wheel in Indiana.

This concludes the 24th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on December 11, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Monday, December 8, 2008.

Thank you.
Comments for this post.

Thursday, November 13, 2008

Carnival of MS Bloggers #23 - MS Change Edition

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
The MS Changes Edition

I've started to notice that a lot of my friends are starting to disappear. It's like this widespread epidemic!
From a medical point of view, I knew that my life was going to change when I was diagnosed with MS seven months ago. Hell, it had already started changing before I was diagnosed. I was worried about things like losing the ability to walk and see. I was worried about how I would go on to be a stay at home mom if I could barely take care of myself. I still worry about that now.

My MIL told me that she has a friend with MS and he says that it stands for "Many Surprises" and I think that's pretty fitting. Atleast in my case, I never know how I'm going to wake up one day to the next.

What I didn't expect to change was how people who knew me before MS would start to look at me differently. They talked to me in a different way. I had some who would try to help out by asking me everything about MS and then I had some who figured that they would just ignore it all together.

The thing was..I used to be a pretty fun person to be around. I loved to laugh and most of the words that came out of my mouth had a sarcastic tone to them. But suddenly, to my friends, I'm this broken, fragile little person who can't be toyed with.

I've had some that have stopped calling all together. Two of my closest friends used to call everyday and we could spend hours on the phone. Now I haven't heard from either one of them in months.

But I will say, I have found some funny sides to this kind of thing.

The hubs has a Great Aunt who is in her 90's and lives in Connecticut. She's a very interesting lady, spent her life working for the FBI but she won't tell you what she did, at 80 she wanted a new car (new car to her meant used car new to her) but the one she wanted was a stick shift so she taught herself how to drive it. She's never been married or have any children and she's not exactly the kind of person to pity someone.

During a phone call, my MIL was talking to her and Aunt said "So where is Tracy? Is she around, could I talk to her?" My MIL told her that I had just gone upstairs to use the bathroom. Aunt did this tisk, tisk noise and said "Oh that poor thing."

When I got on the phone I said "I know, right? You'd think that they could fix something! I mean, I have MS and I still have to go pee..where's the justice in that?"

See, I'm still me.

The thing is, I'm a little more dangerous now. Think about it. Most of the time I use a cane. The cane is long. One time, the hubs said something and I wanted to hit him but he was out of reach so I whacked him with the cane. The hubs says that the cane hurts.

And I just found out yesterday that I'm getting my motorized scooter. Just think of the damage I'll be able to do to someone with that puppy! And I can double it if I hold the cane while driving the scooter. No one is safe!

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

At Everyone Here is Jim Dandy, we find Cure Or Curse, Part II
Let me explain.

Yesterday I wrote of the built-in caveat afforded by MS to the MS sufferer, which goes something like this:

I would really like to rake up those leaves in the yard, but the MS fatigue has just totally wiped me out today. Perhaps I’ll feel better tomorrow (or maybe it will rain and render the idea moot anyway).

I would really love to work overtime for the next five days, but my body simply will not cooperate. As a matter of fact, I need some time off (and, btw, you’re required by law to give it to me). Damn MS!

Honey, I absolutely intended to take your car to the DMV and to stop by the bank and to pick up those things you wanted at the craft shop, but I just simply forgot. It all just fell through a hole in my brain.

You see?

Now have I ever used my disease in such an insincere and dishonorable manner? Of course not. God forbid. I’m just saying.

The thing is, there is really no need for dishonesty, for the conditions referred to above—fatigue, exhaustion, confusion, limitation—are baseline with MS, always present. These are the things we struggle daily and hourly against. We may sometimes feel a bit better (in fits and starts, anyway), and we may sometimes feel a bit worse. Sometimes we feel a lot worse.

We may be slow, lazy, and stupid, but at least we have a good excuse for it.

But, of course, people don’t like excuses (when they are, that is, the excuses of other people), nor do we who have MS like excuses, even our own. We make choices on a daily basis whether to give in to our illness, and thus end up feeling guilty and worthless, or whether to press on against the increasing solidity of the wall thrown up in our path by the symptoms which define our disease.

We have, to begin with, our own expectations. As healthy, non-diseased people, we were used to coming at least somewhere near to satisfying our own expectations. Now, with MS, what we expect from ourselves has not changed, but the ability, or anything like it, to live up our expectations has deteriorated quite significantly (kind of like the present economic situation in the US). It would be nice if our investments could reach anticipated goals, as they used to do, but the fact is that the bank is broke, the market has crashed, and our resources are sadly diminished.

The first rule of having to disappoint others is that this comes only after disappointing ourselves.

This is the key most often overlooked by those who do not have our disease. Often I find myself wishing that people would think this through a little more completely.

What, are we happy with being lazy, happy with being weak, happy with being exhausted, happy with being stupid?

Think again, right?

Please try to remember me as I was before. If I seem different now from what I was then, please ask yourself what happened in between. And believe me when I tell you that I'm trying, and that I am trying much harder now than I would have then.

This concludes the 23rd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 27, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Monday, November 24, 2008.

Thank you.
Comments for this post.

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