Let it be…

Dottie

Dottie

Italy 2010 421Scotland 2013 105

OK, off in the morning, so I’m going to let it be, and going to Kick MS.
Just a few songs I like below.

I’ll be posting all along the journey to Kick MS, it’s nice to have everyone along with me. Thank you.

When I walk…

I leave day after tomorrow, Wednesday, for Moscow and the HSCT that will stop my PPMS and save my life. I’ve been thinking about this a lot recently, do you all really know what I’m going through? Do you know what it looks like when I walk? People see me and always say, “you look great!”, well, I do, and I feel good too. I don’t look sick, I don’t feel sick, you’d never know anything was wrong with me until you see me walk. I lay in bed most mornings for a while before I get up, just because at that moment I feel normal, nothing is wrong. I usually read e-mails, facebook post and news on my iPhone before getting up. I cherish those few moments that my body doesn’t show me it’s sick.

We went on our normal Sunday morning bike ride, down on the trails along the Arkansas river, I love to ride, always have. Today it’s one of the things I can do that you’d not know anything was wrong, I feel free, until I have to go up a hill or you see me try and get off my bike and try not to fall. I can still ride, 6.5 miles, but I pay the price the rest of the day and some of the following day. My legs are very weak, no matter how hard I push them. I have to think about what I’m going to need to do that day, to see if I can exercise or ride my bike. I knew on Saturday I shouldn’t ride, since my family was coming over for dinner, I needed my leg strength to make it through the evening.

Riding bikes up to a castle in France.  I want to be able to do that again.

Riding bikes up to a castle in France. I want to be able to do that again.


I know this post is not my typical upbeat post, but you need to know the truth and know what is happening to me. This disease will take away everything, it’s slowing paralyzing me, from the legs up. I also have some weakness in my hands, bladder urgency, fatigue, and some cognitive issues. It’s slowly taking away my life. So as extreme as it may seem to go to Moscow for HSCT, it’s not to me. It’s giving me a chance to stop this beast in it’s track. I don’t know if I’ll get anything back that I’ve lost, but it’s not totally off the table. I always have HOPE.

So, I thank everyone that has supported me to get this far, we’ve raised a lot of money to help with my medical expenses and the cost of the trip. I will have additional expenses when I return, including MRI’s which cost $2000 a pop, or more if they do multiple views. Also, physical therapy to help gain strength after being the hospital for 5 weeks. So, I will use everything to help me get better. If I have more than I need, I will be donating it to others seeking this treatment. And I will pay it forward by spreading the word about HSCT, and helping others get this life saving treatment.

I want to share with you some videos from Jason Dasilva, he too has Primary Progressive Multiple Sclerosis, and has made a short film that was presented at Sundance Film Festival.

http://wheniwalk.com/
This is a link to his blog, check out a few of them, it’s very interesting and they’re short.
http://wheniwalk.com/blog/?p=528

video of the day…Imagine.

You can close your eyes… and I see kickin’ MS

We’ll the gathering of things to pack has begun, in our house this means laying everything out on the guestroom bed. I waited as long as possible, since this totally stresses out our dog Dottie. I even had a box in the guest room closet I’ve been collecting things in secretly, but now they are on the guest room bed in full view of her. So, Dottie is starting to get clingy and following me around. We just got her over the stress of the move and here we go again. Well, at least Thomas will be here for her, which really makes me feel better. She’s such a mommy’s girl. She’s not allowed on furniture, but at night I have one blanket that I get out and put on the ottoman, and she is allowed up there with me while I watch TV in the evenings. Thomas says when I’m not here he tries to get her to come up for “cuddle time”, he even will pick her up and put her on the ottoman, but she sits there for a few minutes looking miserable, then jumps down and goes on her bed. So, this will be hard on her for sure, possibly Thomas too??

Dottie

Dottie


I ran to the store the other night to start buying the items I need for the hospital stay. Things like, tissues, toothpaste, Depends… WHAT! Adult Diapers?? Yes, or as I like to call them, “big girl pull-ups”. During one procedure, Apheresis, when they actually are gathering my stem cells. You have to lay very still in bed for 4-5 hours, so if you need to, umm “go”, you just have to “go”. So, some of the trailblazers have suggested bringing two big girl pull-ups so you’re not worrying about “going”. (two, encase this takes two days) Hopefully they won’t be needed, but if I do, I’m prepared. Anyone need some extras, I have 15 left, 17 came in a box. 🙂 Anyway, I’m well on my way to gathering the items I need for the trip.

Another thing I thought of is getting my new Arkansas Driver’s License before I’m bald. This one almost slipped by me, and so glad it didn’t. Just the thought of being bald in my photos for years to come made me laugh. Then I was speaking with a trailblazer and she said her’s expires on 9/11 and she will still be bald. Laughed so hard I almost peed in my pants. Big girl pull-ups might of come in handy there, maybe I’ll hang on to them for when I Skype with her, she always makes me laugh.

Anyway, the packing is started. My last minutes “to do list” is getting chipped away, along with catching up with good friends before I leave. I’ve been really packing it in.

Well, I need to run to the DMV now to get that photo made while I have hair. 😉

Two of my favorite artist for you this morning.
Enjoy!
VW

Stir it up…

I was at the post office mailing off some Keep Calm and Kick MS T-shirts. I asked the couple in front of me where they got the box they had, they pointed me in the right direction and then offered me some tape to close it up. While doing that they wife noticed my shirt and asked what they said, I pulled one out and she exclaimed, “I just saw those posted on FB.” I told her they were for my fundraiser. So, come to find out this lady is a neighbor, and saw the post on our neighborhood FB page. She wanted to know about the treatment, which I shared, and the lady behind us in line started asking questions about it as well. Sharing the HSCT story right in the post office. Then, my sister walks in… Little Rock is much smaller than I thought, I’m going to need to watch myself.
1980-01-01 00.00.23-1
$15 for the T-Shirt

Earlier that day, I was folding the shirts from a recent delivery and a contractor was at the house doing some tweaking of some doors. He saw the pile of shirts and asked what they said, I showed him and he told me he had a buddy with MS, and he is now in a wheelchair. He also asked if he could by a couple, of course I said yes. So, I set a couple aside for him while he finished his tweaking. When he was about to leave he pulled out a couple of bills and I told him I could get some change, I figured they were two $20’s. He said no need, I looked down and they were two $100’s. I couldn’t believe it. I told him more about the treatment and he teared up, gave me a bear hug, and had to rush out the door. He sent me a text shortly apologizing for rushing out, but said I hit is soft spot. Such a kind soul.

$5

$5 for the bracelet

So, stir it up, get you a cool T-Shirt and bracelet and help others learn about HSCT for MS.
VW

Life is wonderful…

I had the most amazing day yesterday. I had lunch with two of my closet friends that I’ve not seen for 5 years, well, lunch turned into all afternoon. We were the only people left in the restaurant as they were preparing for the dinner crowd. It is wonderful to have friends like that, you’ve not seen in years and you can pick up and carry on without missing a beat. We were talking about how everything for this treatment has just fallen into place in the last few months, so I KNOW it’s going to work…it has to.

Together again

Together again

1. We found out that Thomas could telecommute with his job and live anywhere. So, even though we live in Little Rock now, he still works for Florida Blue (Blue Cross and Blue Shield of Florida), so he has the same job, same pay, same benefits, it’s awesome.

2. Right after we found out Thomas could move, I jumped on a plane and found our house. It just spoke to me when I walked in. Every house I’ve owned has spoken to me, so don’t judge.

3. While we pulled into the driveway of “the” house to look at it for the first time I check my email and there was one from the hospital in Russia, Dr. Fedorenko had sent me an email letting me know I’d been accepted to the program there for HSCT.

4. I get home after buying the house in LR and receive another email from Dr. Fedorenko letting me know they would like me to be admitted on Aug. 19th. Well, well, this just so happens to be my Birthday!! REALLY!

5. We listed our house and sold it in 10 days, that included the back and forth negotiations and everything.

6. We got the price for our house that we had discussed in advance we wanted…  on the first offer.

I’m just saying, you can’t just make this stuff up. It’s going to work, it couldn’t be lining up this perfectly not to. No one would be that cruel to me.

Life is wonderful!  VW

I will wait…

My sister and I went to see my 93 year old great aunt yesterday, she now lives in an assisted living center. On my mother’s side of the family living into your 80’s and 90’s is the norm. My grandfather is 93 and his sister is 91, sharp as tacks. Anyway, I hadn’t seen her in a few years, I just didn’t make it to Little Rock often when we lived in Florida. She didn’t know we were we coming, and as we walked in she recognized my sister, and then me. She was asking about going to Russia and when I was leaving. Apparently they’ve kept her up on what I’m going through and she was fully aware of they treatment in Russia. Again, amazing. I hope I’m half as sharp as these relatives when I’m their age. She is one of the most positive people you will ever meet, the glass is truly half full for her. She always looks at the positive, never a negative word about anyone or anything. Truly a wonderful example to us all. Her husband, or as she said, her current husband :), is in a different facility to be closer to his family, this is their second marriages after their first spouses passed away. She was able to go and see him recently and she just glowed telling us about it. I can’t imagine not spending my last days with Thomas, but I guess you have to do what you have to do. Again, she never complained about the situation, just said when it’s her time she would be ready to go, because she knew where she was going. I believe that.

Mumford and Sons for you this morning.
VW

I won’t back down…

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.

I won’t give up…

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

93 Million Miles… we’ll that’s how far it seems :)

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.
Pinnacle_Mountain_Sunrise
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.

Sunrise over Pinnacle Mountain

Sunrise over Pinnacle Mountain

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

Ho Hey – Russia here I come

Wear this shirt and good looking guys will want to have their photo made with you.

Wear this shirt and good looking guys will want to have their photo made with you.

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

Previous Older Entries Next Newer Entries