Kickin' MS with HSCT

Over the last couple of months I’ve received many cards and notes from people all over the world with words of encouragement and prayers. These mean so much to me, I read them often. I wish I could take them all with me while in the hospital, but not sure I could pack them all. Thank you everyone for you kind words of encouragement.

Yesterday I decided to go ride my bike on the same River Trails where Thomas and I rode on Sunday. The weather was overcast and it was sprinkling rain, but I didn’t let that stop me, off I went. Bold, by myself. I completed the ride, 6.24 miles, and was feeling pretty proud of myself. At the end of my rides my legs are like Jello, they are very weak and I have to ride up next to something to hold on to just to get off my bike, it’s not graceful at all. Anyway, got off the bike, and then the daunting task of lifting the bike into the back of my SUV. Guess I didn’t think this all the way through. Anyway after a couple of attempts I get the wheel up high enough to clear the lip of the back and that’s when I lost my balance (yes, balance is a big issue for me) and fell with the bike landing on top of me. So, I’m laying in the parking lot with my bike on top of me and I hear a car come by. Oh good, someone to help me out. NOOOO… they just drove past with my laying there. Wait, it gets better. They have to loop around a round-about and pass me a second time, surely they’ll stop then. Oh no, they just speed on past me. I couldn’t believe it, I’m laying there with a bike on top of me and someone just drives on by. Did they think I was down there on purpose? Who knows? Anyway, I was able to get myself up and the bike loaded in the SUV a bit bruised and scraped, I don’t think I’ll attempt the solo bike ride again anytime soon. Any bike riders out there who want to take short rides and help a girl out? I won’t back down… 🙂

My sister, Wendy, suggested a song for me to post, so this is for you Wendy. Hope these words give you strength you as well. VW

Bet you didn’t know Johnny Cash recorded it as well.

When I started this journey I was told, there is no treatment or cure for Primary Progressive Multiple Sclerosis. I didn’t take that as the final answer and I kept searching until I found something that would help me, HSCT. The other obstacle I see people considering HSCT is financial. I often see post where people give up when they see the cost of this treatment and that insurance won’t cover it. How can you get this close and not go the distance. You have to jump out there with a leap of faith that you will be able to raise the funds needed to get the treatment. $40,000 just for the treatment in Russia, this doesn’t include travel, hotels, visa, after care required and the list goes on, it’s expensive. But some how, some way you can do it.

So, don’t give up, there are answers out there, you just have to search for them. Whether it’s an illness or other obstacle in your life, don’t give up.

You’re getting Jason Mraz again today, I love his music. And since this is my blog I get to pick the songs. 🙂
VW

16 days until I leave, 21 days until I’m admitted to the hospital in Moscow. It’s hard to believe I’m just days away from going to Moscow, and starting my treatment. Since we’ve had so much going on over the past few months, this was put on the back burner in my life, but now it’s here staring me in the face and it’s a little scary.

I went riding my bike for the first time in a couple of months yesterday, on the River Trails, they’re down by the Arkansas River. When I was a kid this area was just a road that fishermen would go down to launch their boats, or kids would go at night to drink beer. (No, never me Mom and Pop ;)) But, now it’s an amazing park with trails everywhere, even over to an island that was nothing more than a spot of land in the river you’d see when crossing the bridge. I’m going to go ride my bike over that bridge this week and take some photos. The view is beautiful, you can see Pinnacle Mt. in the background, I used to love and hike up to the top.

I took Tom there on one of our last trips into town a few years ago, and we trekked up to the top, I could do it then, but it was difficult, I couldn’t even think of trying now. I knew something was wrong even then, my legs were weak when they shouldn’t have been. There were signs as far back as 4 years ago, I saw them but not even my husband did. Walking along the beach to the pier was easy, then my legs starting feeling heavy at the end of the walk. I’d make my walks shorter, but I’d still have difficulty at the end. This had to be just me being out of shape and under a lot of stress from my job, nothing was really wrong. When we were in Italy a few years back, was when I think Tom was starting to notice I couldn’t walk as far. But, I think he thought the same, “she’s getting out of shape”. But then when it was getting difficult just to walk the half a mile around the block to walk Dottie, I knew I had to go to the doctor. Who knew this would all lead me to this journey of going to Moscow for treatment, but here I am just a couple of weeks away. I hope that one day I can climb to the top of Pinnacle again and see the beautiful views. Even that hike seems like 93 million miles for me today, but hope is what I have.

VW

I saw my countdown clock yesterday post 25 days until Russia…It’s all becoming so real. I have very mixed emotions right now. I’m excited, scared, hopeful, the list goes on. Mostly hopeful for the opportunity to Kick MS and hopefully help others learn about this treatment. I was out shopping yesterday wearing my Keep Calm and Kick MS shirt and the cashier asked who I knew with MS, and I told her me. She frowned and said, “I’m sorry”. Then told me it ran in her family and had taken it’s toll on them. So, it gave me the perfect opportunity to tell her about HSCT, she seemed greatful… or just wanted me to move along, 🙂 who knows.

Ho Hey! Enjoy, I love this song.
VW

My load is slowly being lifted up off my shoulders, thanks to many friends and family helping us out.  This is happening in many ways; closing on our house in Florida, my family helping unpack and getting settled in our house in Little Rock, Fundraising efforts in full swing, many prayers and positive thoughts for us, and many other small things are just working out.

One big thing is the fund raiser in Jacksonville, Florida I just attended on Tuesday night, what a party. The design community really came out in full force to help out. We had 125 attend and raised $16,000!!! Wow! Even more amazing was how these groups of people that are normally competing against each other all came together to put on this wonderful event. OK, except for the highly competitive side bets of who could raise the most money.

So, my load is being lifted and I’m so ready to get to Russia and Kick MS out the door.

So, thanks everyone for your help, “take a load off Sally/Vicki”  Enjoy!

http://www.youtube.com/watch?v=HmRDM7GyJXE&list=PL3EC386125CE3FE50&index=2

VW

There is little difference in people, but that little difference makes a big difference. That little difference is attitude. The big difference is whether it is positive or negative.Robert Collier

I met an amazing woman yesterday, full of energy and positive attitude. You couldn’t walk away from the meeting without feeling energy and motivation. You think, “sure, nothing bad has happened to her”, oh, how wrong you are. She and her husband have both suffered terrible injuries this year, but they are both recovering and looking forward to their next adventure. Getting back on the bicycle so to speak. She is the type of person I hope to be, someone that inspires you to push forward and help others, to be uplifting. We all go through difficult times in life, the difference is how you come out at the end. Full of self pity, or drive and motivation to push through and get to the other side a better person, we all have the ability to make this choice. I’ve been to a couple of MS support group meetings and I must say, those were the most depressing few hours of my life. I couldn’t get out of there fast enough. They all seemed to be drinking the kool-aide, and just accepted what the doctors told them. They didn’t have any drive or fight to find other answers. I can’t have those types of people around me, I’ve made the choice to fight this disease, it’s not taking me down without kicking and screaming. So, let’s just see who is still standing in a few years, I’m putting my money on me.

A lot of times people look at the negative side of what they feel they can’t do. I always look on the positive side of what I can do.
Chuck Norris

A little Bob Marley for you this morning… “No woman, no cry”

“Everything’s gonna be alright”
VW

Last night Thomas and I went to my parents house for dinner to celebrate the 4th of July, Independence Day. This was the first time in many, many years I’ve been in town for this holiday, or any holiday other than Thanksgiving. When I walked in everyone was wearing my fundraising shirts, Keep Calm and Kick MS, what a nice surprise to see the family all out in support to do what they can to help me get to Russia.

The treatment in Russia is very expensive and insurance does not cover it, since it is overseas, but this treatment can save my life, so I’ll do anything possible to make it happen, including one of the things I like the least, asking for help. All shame has gone out the window for me at this time.

Many people have asked what they can do to help, so here is a list of things you can do.

1. Prayers and positive thoughts have gotten me this far, keep them coming.

2. Buy a T Shirt, $15 or wrist band, $5.

3. Make a donation through PayPal on my web site. http://www.kickinms.com (guess you know that since you are reading this blog :0)

4. Tax deductible donations can also be made to The Pointe Church, with a cover sheet stating it’s for Vicki’s treatment in Russia. Just ask me or any member of my family for us to e-mail specific instructions on how this needs to be made out. 100% of those donations will go for my treatment and expenses.

A little Bon Jovi to get you going this morning.

http://www.youtube.com/watch?v=abzbVFuxigg

Keep Kickin’ it!

VW

 

Happy 4th of July!

I hope everyone enjoys this Independence Day! Just wanted to share some quotes.

“All men are created equal…„

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.
~ The Declaration of Independence July 4, 1776

You have to love a nation that celebrates its independence every July 4, not with a parade of guns, tanks, and soldiers who file by the White House in a show of strength and muscle, but with family picnics where kids throw Frisbees, the potato salad gets iffy, and the flies die from happiness. You may think you have overeaten, but it is patriotism.
~ Erma Bombeck