Thursday, April 30, 2009

a very special kid

You all know how much I love to share stories about people who do something special for a person with MS.
Well, this time, I was the honored recipient of a very special little girl who did something for me and for all of us with MS.
On Sunday, our town held our MS Walk. One of my team members, Kaitlyn, who is ten years old, showed up with her mom ( who also has MS).
Both of them had the idea that they wanted to do the walk. I was very concerned about my friend being able to pull off three miles. I sat her down and told her I want to support you but please don't do this if you are not up to it.
It was pouring rain and well as we all know, rain tends to tighten your muscles even more.
My friend, Jackie, decided it probably wasn't a great idea for her to attempt to do the walk. Instead we decided to train together for next year.
Kaitlyn wanted to do it so we set her up with another team member who she knew ( thanks Nancy) and off they went.
They arrived back a short time later. Kaitlyn wasn't up to the walk that day. Ok, she hung with us.
She took control of my table and was such a huge help selling bears and shirts. A regular pro. I wanted to hire her on the spot.
I think she just needed to show her Mom she was willing to do so much to help find a cure for MS.
The moment that made me want to cry was when she told me she asked her teachers for donations. I'm not sure exactly how much she raised but I believe it was about $133.00.

Now that's a kid I want to salute. It will take the next generation to help find a cure for this hideous disease.
Good job Jackie on being a great parent. Kaitlyn has been thru a lot and I am very proud of her for dealing with alot of adult problems a kid should never have to deal with.
I am even more proud of her for her help with this MS fight. Even if she had just raised $10 I still would have wanted to cry.

My DNA parents, didn't make that effort or anywhere close to it. I never even got a phone call for support before or after the walk.
Thanks again Kaitlyn, you are my hero.


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Busy, busy, busy

I have been so busy lately I realized I haven't blogged in a few days.
Not like me but I seem to move a few steps forward and several steps back and nothing is getting done.

I'd like to start by saying a huge Thank You to some of my fellow MS bloggers.

As in my last post I mentioned I wanted to add some new shirts to my business and I was looking for ideas. A couple of my blogger friends asked if they could post my request on their sites. Wow ! Thanks Ladies. I really appreciate it.
So when y'all (Oh my god , the North Carolina girl came out in me again ) have a chance
please check out their sites.

The blogging world is alot different than I had ever imagined. It has all types. I have been fortunate to find some wonderful people behind the blogs that I would consider my friends.

I have also found a few skunks. Those bloggers who don't have a life, have nothing worthy to say and those who nobody wants to listen to.

It's no secret I have one out there who wants me off the blogging circuit. Well, it ain't gonna happen. So grow up and stop bad mouthing me. You look like the idiot you are.
I recently read a post from another blogger who I believe is probably being harassed by the same blogger I am.

I am grateful I have found the bloggers I have. This is a tough disease to deal with without having to deal with insecure bloggers who are basically jealous.
Personally, I am kind of proud this blogger is jealous of little ol me.

Well, I have a business to run and a blog to write. A zillion volunteer obligations, respect in my community, the face of MS in my county.
I just raised alot of money of NMSS, volunteered at the MS Walk, had a team for the MS Walk
oh and ethics.
Top that little insignificant blogger. I will try to step over you as I move my MS leg up onto the curb from your home in the gutter.
Get a life ! You can't have mine.


Monday, April 27, 2009

Attn: Creative people

I am looking to add a few new shirts to my product line....

I am looking for a few good and clever MS ( Multiple Sclerosis) related sayings to put on shirts.

I want to have a contest so my readers can vote on them and the winner or winners will recieve a free shirt.
Sound good !

So if you are one of those creative and clever people who would like to win this contest. ( for bragging rights, of course). please email any ideas to

I have a few ideas but I would love your input.

A few rules...Nothing religious, nothing political, nothing racist and no swear words ( or keep it to a minimum) LOL

Thanks for your help. I know some of you are very creative so let's get that the creative side of our brain going !
rah rah rah !


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MS Walk a day after

Here are some pictures we took yesterday.

Only half the team. It was hard to round up everybody at once.

The second picture is of Mark & I.

Mark did so much set up they gave a neon green shirt. I'm surprised he put it on.

Sunday, April 26, 2009

MS Walk

Today was our MS Walk. It was a huge sccuess despite the pouring rain.

The rain seem to go away just as the MS Walk began.
We got there about 7:30 am and set up our table for our business. I had brought some products to showcase as well as some products to sell.
It got a little crazy.People loved my MS Bear Hugs. These bears are sooo cute and so huggable and I sold a bunch of them today.

The State Representaive showed up for the ribbon cutting but the Senator did not and other State rep. did not show. Nobody from NMSS was surprised by the no shows. I was really hurt and surprised. See if they get my vote next time they are running.

The one State Rep that did show up came last year as well. I have met him several times before and he is truly supportive of not only NMSS but our small town. When he ran for re-election
recently I wanted to be his campaign manager. You just don't find guys like him very often. He is truly an asset to our community.
While he was there. He wrote me a check as a donation. I was flabbergasted.

I have a zillion orders to process and inventory to do so I know what I have to reorder but all in all it was a success.
3 of my team members didn't show up. One I not surpised by but the other two I am.

Thanks to all my team members, Nancy,Bob, Steve and Larry ( the dog). To Barb and Matthew ( sorry you weren't feeling well, but I know that chocolate chip cookie helped) Jackie and Kaitlyn.
who weathered thru this dreary and cold weather for me. It means more to me than you will
ever know. Thanks to Larry who got his little white paws wet for me.

Thanks so much to Jackie and Kaitlyn who helped me at my table. Kaityln you were great with the bears.
Thanks to all of you who learned about my business and who purchased something.

Thanks most of all to Mark who did so much, as always, for this MS Walk. They even gave him a volunteer shirt in neon green. Thanks so much for making my life wonderful. I can't imagine life without you.


Saturday, April 25, 2009

MS Walk set up

We just got back from the set up for the MS Walk tomorrow.

As usual with our incredibly lazy committee there were those showed up to work and those that didn't bother to show up at all. One showed up almost an hour late with fast food in hand and sat on her ass while the rest of us worked.

We met the NMSS employee at an inkind location to help pick up the water and donuts for the event. There was no way she was going to fit all that stuff in her van. so we loaded into our truck and headed over to the university for set up. We got there early and I thought as long as we have time we made a quick trip home and retireved our dolly. Boy, did that help later on.

We had less to set up because Miss Lazy Ass decided she wasn't going to pick up the tablecloths like she was suppose to. Great decision, Miss Lazy Ass. I noticed you had time to pick up junk food to make your ass even bigger. That kind of help we all could have done without.

Mark worked his butt off. I was exhausted when we left.

Tomorrow should be a great day, despite the rain. I always believe when it rains it is good luck. At least that's what everybody told me when it rained on our wedding day.
It is God's way of expressing happy tears.

Have a great day everybody.


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We got it set up and

Mark's birthday clebration

Last night Mark & I went out to dinner to celebrate his birthday.
It was kind of hard to top last year's celebration and I really didn't want to.
Last year it was a special number which called for a special celebration and
this year it was going to a nice quiet celebration for two.

As many of you know our favorite resturant in town closed the end of March
so we had to do plan B. I am not much of a drinker, in fact I have often been referred to as a cheap date. But last night I had a " coyote ugly" ( served in a 23 oz glass) I was bouncing off the walls when I got home and I only drank half of it.

I was so proud of myself because I only used my cane, Mark's arm and I was wearing heels. My latest attempt to regain my life before MS. I di really well but I did better after I had the drink.

Mark and I had a nice quiet evening, which is what we both needed before the crazyness of the MS Walk weekend.

It is raining and thundering and I think Mark is goingto go to the grocery store aloneso I can stay home with our rescue dog who is so afraid of thunderstorms. Just like a mom !!

Have a great day yeverybody.
Stay dry if you are in Wisconsin. I think I will addtowels to my list of things to bring for my team for tomorrow. I am the team captian after all.


Friday, April 24, 2009

Keep your cool with Cooling vests

I spent the morning adding a bunch of new products to my website
and I haven't got most of what I want on it.
This is a new product line for me and I am very excited. I made myself the promise that I wouldn't put crap on my site and so far I believe I haven't.
These items might be a little more expensive that some of the ones you have seen around but I truly believe the quality is the difference.

I am the last one who wants to be out somewhere with a cooling vest that doesn't work.
I also wanted one that didn't scream " I am going hunting or fishing." At least these come in different colors so well I'm going to say it " they a little more girly".
The bottom line for me is comfort and not passing out in the upcoming months of heat.

There are some great new hats ( not all of which are on the site yet) and neck wraps ( not all of which are on the site yet).
I have included a wonderful explanation of the different types of vests and depending on what you are doing as to what you can expect.
My head feels like it is going to explode. It is very very time consuming work and very very hard on my brain to add even one item and this morning I added several.
So, please check back from time to time. I will be adding more as my head allows.
Burst ! I think it is time to lay down !
Today is Mark's birthday and we have plans to go to dinner. (something we rarely do anymore)
Happy birthday sweetheart ! I love you !


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Thursday, April 23, 2009

My 15 minutes of fame..

Today I got my 15 minutes of fame as they say, however, I think it was more like 5 minutes of nerves.
Today I did the phone interview with a local radio station Sunny 97.7 to help promote our MS Walk here in town.
I was asked on Monday if I could set up a phone interview with a radio station some time this week. A little short notice but once again I pulled it off.

It was a nice short interview about my struggle with MS, the change in location for this year's walk, and what MS is.

I was honored to be asked to do however I was a nervous wreck. That in itself makes no sense to me because I have been giving speeches in my professional life for a long time and since I became a patient advocate for Tysabri I have been speaking all over the State of Wisconsin.
Whatever the reason, I was really feeling the nerves.

It went well and I am really glad it is over. Still have a lot to do for my business for the walk but just about everything else is done. Yeah !


Wednesday, April 22, 2009

What's next? Posing in an orange bikini !

This story is about my friend Shelley who I met at the NMSS Conference in Chicago last year.
You know I love to highlight positive people with MS and especially when they are my friends.
We love you Shelley and all that you do for the MS Community.

MADISON, Wis. -- Wisconsin currently has one of the highest incidences of multiple sclerosis in the country. More than 10,000 people live with the disease, and 10 percent have a primary progressive course.

One of that number is a familiar face to WISC-TV viewers. Shelley Peterman Schwarz is a warrior in the fight against multiple sclerosis, and soon she will share her personal journey with a national audience. Schwarz once a month, she hosts a segment called "Making Life Easier" at noon, where she offers advice, tips and coping strategies for people with disabilities, WISC-TV reported.
"I hope that we can put a face on MS, and also show them that life does go on," said Schwarz.
Soon, people across the country will be able to watch and hear her advice, as she has been chosen by the National MS Society to produce videos and a DVD for their Web site.
A camera crew from Denver spent three days following Schwarz around her house, recording her tips for things like making the bed.
"We're showing some of the things that I do to give people ideas, and also to give them permission to do things differently," Schwarz said.
Schwarz was 32 years old, newly married and had two young children when she was diagnosed with primary progressive multiple sclerosis.
"Knowing where I've been in those sad, dark days to where I am today is a great transition and I hope it encourages people to say, 'You know what? I can enjoy the things I can enjoy, and don't worry about all the cant's and can't do's,'" she said.
Schwarz has dedicated her life to spreading that positive message. She has written seven books, runs her own business, and will soon be a national celebrity.
"She reaches out to the community. She tells her story from the heart. She helps people who are newly diagnosed realize that life will continue to go on in a positive way as long as they have a positive attitude," said Colleen Kalt, president of the Wisconsin MS Society. "When you have someone who has the disease telling the story from their experiences, it really truly makes a tremendous difference."
Schwarz's Webcasts will begin to be posted on the Web site for the National MS Society in August.
The DVD, which offers tips specifically for people with primary progressive MS, will also be available there.
Schwarz's local Web site is, and her next segment will air on May 19.

So, my title has to do what I won't do next for the upcoming MS Walk. I draw the line at posing in an orange bikini, especially because it snowed yesterday. LOL


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Tuesday, April 21, 2009

Tysabri done for the month

Yesterday was my Tysabri day. Boy with everything I have going on I reallllllly needed my Tysabri fix.

Felt energized when I got home but then my infamous stomach problems kicked in. Not related to the Tysabri infusion but a "perk" of my MS. So I got very little done after I came home other than spending time in the bathroom.
Later in the evening I started to experience vertigo problems. Wow, it's been a long time since I had to deal with a spinning room. I think I need to cut my activities way back. My body is talking to me and I better listen up.

I dropped off a Thank you note at my physical therapists while I was at the hospital. They got together and made a donation to my MS Walk team. I was so excited and touched when they called and told me. It means so much to Mark and I that we have such a wonderful support system.

Still nothing in the way of support from my family. But I don't expect much from them anymore. It is just really hard this year because my dad told everyone they were going to support the MSWalk and basically they lied. Surprise surprise. Anybody who knows the pathetic crew knew better than to believe anything that comes out of their mouths.

I am trying to do a last minute interview with a radio station to help promote the walk and our last MS Walk meeting is tonight. Did I mention that it snowed last night and this morning???
We might have to rename our MS Walk to the MS tromp thru the snow event !!

Feeling better today. The stomach problems have subsided. Not completely gone away but getting better. At least the room isn't spinning as fast as it was last night.

I'm going to put some music on and make some bracelets for the MS Walk. That will relax me a bit.
The dogs are snoring ( too much fun in the snow this morning). They are wiped out sometimes I would love to be a dog. Eat, sleep, poop,sleep some more, have someone else make your bed.
I want to be reincarnated as a sheltie when I die.


Sunday, April 19, 2009

MS Walk a week away

Next Sunday is the MS Walk here in town. We still have alot to do

I am on the committee so I have still have a few things left to do, but of course, I don't have the info I need to get them done. I think I am going to wing it and do it myself.

I am also the team captain for our MS Walk team conincidentally named after our business.
Team is very excited about this opportunity. I have 14 team members. I think these people are so special that they would walk for me. They have all been so supportive of my decision to attempt to walk it next year.
You guys are the best support system a person could ever have.

This morning I realized that tomorrow is my Tysabri infusion. How could we both have forgotten that? I think we both have way too much going on.
Neither one of us could roll out of bed this morning. I had over 9 hours sleep. A couple cups of coffee and we were good to go.

Mark and I made a sign today for our team photo. Who knew he had so much talent.
I cut out the letters ( compliments of my cricut machine) and he arranged and glued them onto a board. With his straight edge in hand he went to work. Only an engineer could make a cheap sign look like a piece of art. Thanks honey !

We reviewed all of our travel documents for the upcoming cruise. They emailed them a couple of days ago but we didn't have a chance to review anything until today.
I know we are both excited. His mom is fixing a gown for me. It was a little short so I asked her to lengthen it. Now that I can't wear heels anymore I really want to hide my shoes. No, I am not going to wear my nikes.
I told Mark he can pick out my bikini wear. LOL ! I need a tan though. I wonder if you can mailorder a tan.

It's been one of those days to get caught up. Sleep! Work! Orders!(yeah) Playing with the dogs! Etc.
Have a good one everybody. It's gloomy and about to rain here. We might even see snow tomorrow. No, that was not a typo I did say Snow. That is starting to be one of those four letter words I don't want to hear.


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Saturday, April 18, 2009

Wow ! My legs got a workout

Yesterday Mark took the day off ( vacation from last year that runneth over so he had to take a day off).
We went to a really large mall about 40 minutes away and decided to just shop. Just in case I overdid it we brought my manual wheelchair.
When we walked in we noticed a restaurant we go to on the river with our boat.
I din't realize they also had a location at the mall. We decdied we would treat ourselves to a sit down lunch. A nice restaurant instead of fast food. We all know how I feel about fast food. Yuck !
I had a wonderful blackened salmom wrap ( that probably was a 1000 calories disguised as healthy)

I had my pedometer on and we just walked and shopped. He was on a mission to buy a new suit. One store advertised a great sale ( which sucked) and we ended up in Macy's. A real store. We don't have real stores in the city I live in. I almost fell over watching and looking at all the pretty displays.
It has been a long time since we were at a Macy's. I would probably like shopping more if we had any decent places to shop in town. We also have a hard time finding the sizes we need here so we have to shop elsewhere. I could never find a small size here. I do most of my shopping online.

After the mall, we went grocery shopping. An employee at the store and I always compare pedometers. She walked 14,000 steps one day. Wow! She is always running around the store
helping customers so I am not surpised.

I probably walked close to 2 miles yeaterday. Last night was rough, my calves kept cramping.

Today I have to finish up some stuff for the walk, make a few thank you notes, a sign for our team photo. No orders so far today but I wouldn't mind working that into my schedule.
This month has been so busy for all parts of our lives. Except Mark's travel. Yeah!

So I am off to do some stretching exercises and maybe later we'll do a lap around the block. It is suppose to be 70 degrees today so I am not sure a walk outside is a good idea.

Have a great day everybody !


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Wednesday, April 15, 2009

Walking on sunshine

I've been so busy lately I haven't had much time to post anything or read everybody else's blog. I am getting caught up.

The MS Walk is on April 26 and I am on the committee plus I am the team captain for our team. Although I am not walking this year I have so much to do.

Mark is in Detroit,one of his favorite places, and will be home tonight. He's been complaining about the rain and I am having a hard time being compassionate because I am sitting here in shorts. Yeeks ! April in Wisconsin and I'm in shorts.
Ok, so I just worked out and I wanted to be comfortable and not overheat.
I think I may have worked my abs too much becauseI am feeling some pain. Oops!
People with multple sclerosis shouldn't over heat. yada yada yada.

Tomorrow I am going to the mall to go for a walk. I have had numerous offers to join me but I really want or need to go by myself so I don't get sidetracked. It's hard enough with all the sales signs in the windows.
Once I get in more practice I will take you all up on your offers. I will probably need some motivation by that point so get your knock knock jokes ready incase I need a laugh.
3 miles is my goal so I can walk the MS Walk next year. I'm okay with how my body is doing.

This morning I put ribbons around the necks of all my bears that are on my website for sale.
The office had cute little bear faces looking at me from every angle. I had to package them up because I was laughing instead of working. they are all done and ready to bring to sell at the MSWalk.
I am also making bracelets to bring but my fingers aren't working so well today so I will do that later.
I made a flyer to put in the goodie bags for the walkers however as I was folding them last night I got a really bad paper cut. No bandaids nearby so I had to throw out the flyers that I bled on. Ooooh ! I'm a bleeder.

The dogs are sleeping. One, as usual, is snoring. Only 100 more things to do on my to do list. By tomorrow I'll have several more. I'd like to toss the Blackberry in the trash because it keeps flashing. Isn't there an "app" that tells the Blackberry I already have too much to do.

Have a great sunny warm beautiful day !


Tuesday, April 14, 2009

Vacation plans are done !

After many hours of deliberations we have finally pulled our vacation plans together.

My primary focus was to find a way for Mark to escape where no one could reach him. LOL. that wasn't reality butthe second one was so we could both relax.
His job is stressing him out which is stressing me out. He has so much on his plate and while he loves what he is doing it is job overload.

So our plans are... the drumroll please....
We are going to fly to Venice and cruise Italy, Greece and Croatia.
No I'm not kidding !

We found a wonderful deal and have traveled with this company before. We tried so many options and drove the companies involved crazy trying to fit our crazy schedules into a vacation.

I have to work around my Tysabri infusion and he has to work around job conflicts. Amongst other things.

So we are both excited about the trip. I have always dreamed of cruising Greece. I love Greek food. And he has been to Italy before so he can mini tour guide. We have to fly in early and spend two nights in Venice ( boo hoo). I want to take a gondola ride and eat pizza.

I'll share more details as the time approaches but for now we are very excited. Hopefully nothing will interfere with this. We both really need a vacation together.


Less than two weeks til our MS Walk.

Sunday, April 12, 2009

MS Walk training update

Mark and I just got back from a walk around the block. The weather was great and NO coat was required.
This is Wisconsin and weather has well basically sucked for so long that NO coat is wonderful.

I was really dragging near the end but Mark kept talking and I could focus on that instead of the steps I was taking.
I could see the park so I was motivated. I'm really starting to believe I can pull this off next year.
3 miles is a long distance for someone with multiple sclerosis but I want it so bad.

I had a conversation with someone the other day( whom I have never met in person). She is just a phone voice. She said in short that if I attempt it she will be there at the finish line for me.
Wow ! That's the motivation I need and so much appreciate.
Maybe she can call my parents and explain support to them. hahahahahahaha !

Gotta laugh about it because the alternative is tears and I promised myself I wouldn't shed another tear about my family walking away.
I am enjoying walking again. I'm going to the mall again on Thursday and hopefully do two laps of the mall instead of one. We shall see.

We finalized our vacation plans and I will post about it shortly. I'm very excited.
It'll be a romantic, relaxing vacation in a place I never thought I would go to.
So a hint. No, just a teaser.



Saturday, April 11, 2009

Planning a vacation

Mark & I have been trying to plan a summer vacaion and have gone back and forth as to where to go.

We thought about Hawaii, about a weekend in New York, trying to get together with my cousins from Philly and about a half dozen other options.
Traveling with MS has always had those barriers. Not everywhere is handicap accessible. What about the heat? Steps? Walking distances?
I think everywhere has some kind of obstacle but I am convinced we can find a solution.
Especially since I am feeling better. I believe we need to do this before I can't do it.
We have gone around and around in circles trying to chose a place.
I think we both just need a week off where we don't have to do anything.

We are close to finalizing a decsion and will report shortly what we have decided.
Haven't figured out how to deal with the business while we are gone but I am sure we will figure it out.
Mark needs to get away so nobody can find him. good luck !


Thursday, April 9, 2009

too much going on

It's been one of those weeks where so much is going on I can't seem to
get anywhere close to caught up.
From adding two new team members to my MS Walk team to the envelopes
arriving daily with donations ( and then writing thank you notes)to the craziness of this business.

Today I got an envelope in the mail that brought tears to my eyes.
I am so blessed to have such wonderful people in my lives.
You know who you are so a big thank you from the bottom of my heart.

I am in the process of adding a new vendor. One that I am very excited about.
Except that means adding products to my website, myself. It is not a long process
but a process I can only do when my brain is fully charged.

I am having significant problems with another vendor and I'm ready to call
my attorney because I don't want to deal with it anymore.

I have been exrcising alot lately and honestly I think that is what is keeping
me from going completely crazy.

My husband and I have been trying to plan a summer vacation together. What
a concept. I think we finalized an incredible deal last night. More details later.
I am going to ask my mother in law to tweak a dress for me so I can wear it again.
It is one of the most beautiful gowns I have ever owned and I really want to wear it again.
I'll take a picture and post it soon.

Then of course, we have housework, laundry, cooking, the dogs, the husband,yada yada
I had my hair done yesterday which is normally very relaxing for me but I couldn't
sleep last night at all. My brain was running a mile a minute so today I am feeling
hungover. Maybe I should have a drink. LOL

Mark has tomorrow off for Good Friday so we are going to run away from home.

Maybe I just need a day off.

Hope everybody has awonderful Good Friday, Passover, and Easter !


Tuesday, April 7, 2009

Why my dogs make me laugh !

This morning my dogs were so eager to go outside they did something that
made me laugh.
I have tried very hard to teach them doggie etiquette and to respect each other but sometimes
excitement takes over and well, they forget.
This morning they attempted to run thru the doggie door together. Now, I know they love each other but there wasn't much love going on when I was trying to unwedge their asses from between the sides of the doggie door. It was however very funny after they were unwedged.
I guess I'll have to retrain them on doggie doors. Classes start tommorow morning. We'll call it doogie door 101.

I went out for a little while today and when I arrived home I was greeted with the usual excitement of " mommies home". They danced around me and I gave them both hugs. I had a few things to carry in so I grabbed a large box that UPS left on my doorstep, my purse, my cane and the mail which was on the foyer floor.
I scooped it all up in two trips and settled down on the couch to regroup. I realized I was a dog short. I called Noelle and got no response. I thought she was outside but I couldn't find her.
Lately, she has been running upstairs as a little game so I drug myself upstairs to look for her.

All the while, I called her name. I started to panic. Where the heck was she? I hoped she hadn't jumped the fence in all that excitement of me coming home.
I came in the house and looked everywhere. Still calling her name and almost in tears by this point I heard her bark.
But I still couldn't find her. I decided if this was a game I wasn't having fun.
Meanwhile, Ripley is hugging my legs like I was going to lose him too.
Finally I heard her bark again and realized when I closed the door to the foyer she was inside.
oops! When I opened the door she came slithering out real close to the ground and darted outside. I followed her but she was moving much faster than I was.
When I got out back she was squatting and doing her business.

I guess I literally scared the s*&t out of the poor thing.

A couple of hugs later and I was forgiven and all was forgotten. Except for me, who was wiping the teary mascara ( or what was left of it) off my face.
Good grief. why is we have dogs anyway? Because they make me laugh, and they make me cry and I can't imagine my life without those furry creatures.


Monday, April 6, 2009

A walk in the Mall

I just got back from my Mall Walk. I was excited about going for a walk but also dreading it.

I realized if I couldn't do one lap I would never be able to do the MS Walk in 2010 like I want to.
I finished one lap and was so pumped I wanted to do a second lap. But I figured maybe not overdue it.
Instead I choase to go shopping. I really don't like to shop but I never ever get the chance to shop alone anymore and I was feeling fiercly independent. So I went shopping.
The first store on my list was Victoria's Secret. I rarely get to go shopping for those kinds of things by myself so I seized the opportunity. And the reason I hate to shop is as a disabled person salespeople have a tendency to run for their lives.I'm not contagious, I have MS.
Anyway, the sales woman was soooooo nice. I couldn't believe it. She helped me so much and I ended up making a nice purchase. ( incase she works on commision or some other sales incentives)
As I was checking out, I couldn't find her and told the woman at the checkout I wanted to make sure she got credit for this sale because she was so helpful. As it turned out the woman checking me out was the manager.

I did see my sales woman as I was finished and thanked her for treating me with repsect. Not realizing who this other woman was at the time. So her manager heard everything I said in thanking her. Maybe she will get a raise.
Victoria's Secret was the only store that had people in it and they were actually quite busy. The economy doesn't seem to have put a damper on the intimate purchases.
I ran into my friend who works at the mall and hung with her til the Handi Van came for me. I think I did enough walking for today. I'll get caught up on reading everyone else's blog


Friday, April 3, 2009

Tysabri Patient Education Program

Last night I gave my speech for a patient education program sponsored by Biogen Idec, the makers of the drug Tysabri.
It probably was one of the best events I have attended. It was the first time I gave my " new and somewhat tweaked" version of my speech. I like the changes I made to it. It helps set the stage for how things were before I began Tysabri.
It's no secret that I have had tremendous success with this drug. I am very proud of myself and my success.
As we all know success doesn't include a "magic pill".Or in this case an IV once a month.
It takes alot of hard work and the right attitude. ( ok, stop with the attitude jokes) Plus taking care of yourself. Eating right, exercise. Nothing is going to have success unless you can formulate a plan to include all of these factors.
I work really really hard at doing these things. Although I did eat a big cookie last night and then stole one for the drive home LOL
This event was alot of fun for me because I knew so many people there. They brought their friends and so on. I usually don't like to speak in front of friends.
Thanks for behaving yourself and not heckling me. I know some of you were dying to do it.
Thanks for not making funny faces at me while I was speaking. I know a few of you probably wanted to that to.
But most of all, thanks for being there. As you heard from my speech I have no family support
so friends are important to me.
I met so many wonderful people. In fact I had to duck out to use the restroom ( surprise, surpise) and when I returned people were waiting at the door for me.
I am sincere about my offer to listen. So to those of you who had a private moment with me, please call me. It'll be okay. We'll get you thru this together.

Hopefully, I'll be speaking for Biogen Idec again soon and will have the chance to meet others on Tysabri or considering Tysabri.


Tell a friend !

Wednesday, April 1, 2009

My Tysabri Story

Tomorrow I am giving my speech at a patient education program sponsored by Biogen Idec, the makers of the drug Tysabri.
I have been on Tysabri for 2 years and my body has gone thru many changes. All for the positive.
A couple of things I would like to clear up though. I was NEVER wheelchair bound. I don't ever want to mislead people.
I live in a two story home. A home we purchased two months before my diagnosis. They thought it was a neck problem that would go away with surgery.
I was walking with a cane before my diagnosis and crashed and burned shortly thereafter. My life sucked very quickly. I lost my job, couldn't function like I used to ( too many examples but you all know what I am talking about). I NEVER left my home with the use of my wheelchair because I always fell or was completely exhausted. I had two years of this and it kept getting worse. I could hardly cut my food. My husabnd had to do that for me.
Once I began Tysabri my body began changing and I was able to function better. After six months of being on Tysabri I walked into the hospital for the first time in 3 years. A huge thing. My wheelchair now sits in my living room collecting dust. I refuse to dust it.

I went snow skiing for the first time in my life STANDING in January 2008. I travel by myself and I stand while cooking dinner every night. Right now I am training to do the MS Walk in 2010. It's 3 miles and I am determined to do it. I have an entire year to train.

Today I rode my exercise bike 3 miles. The most I have ever ridden. I only got the bike in December and the first time I sat on it my husband had to get my legs started. There is no way I can say Tysabri is not responsible for this. But it is also alot of hardwork and determination on my part. I am not going down without a fight.
I realize I may not be able to get out of bed tomorrow. Welcome to the world of MS. I know I may have to use that wheelchair again.
Right now, I am loving life. I've been rock bottom and I am fighting back.

If anybody has questions about my progress with Tysabri, I would more than happy to share all the details. I might even share my speech with you ( as long as you don't mimic me as I give it) LOL

I am so in love with Tysabri for what it has done for me. All drugs have risks. Betaseron caused my liver to misfunction. Copaxone screwed up my kidneys.

I was a pedestrian in a crosswalk hit by a car .( And the son of a bitch left me there ) There are risks in life.

I am delighted I canshare my story with people considering a change in meds. But, people, the decision, is your and yours alone. Please don't let anyone influence you in any way, even my story.


Tell a friend !