The Speech

The night before the Martha's Vineyard, I was lucky enough to speak to the participants at the kick off event. I was a little nervous and didn't say everything I wanted to say, but it went something like this:

Welcome to MS Ride the Vineyard 2008. I am visiting today from Salt Lake City, Utah. I grew up in New Hampshire and moved to Salt Lake four years ago to find deeper snow. Being here today is exciting for me. This is truly a full circle moment.

Two years ago in the Spring of 2006, I was training for the MS 150 in Salt Lake City Utah. The owner of my company has MS and inspired me to raise money for the NMSS. He has been in wheelchair for more than 20 years and I was going to ride for him. John Shuff was my face of MS. During that time, I had just returned from a trip to Germany and what I thought was a little jet lag turned into a lot of vertigo. I had experienced vertigo before and I figured it was just some type of ear infection. My doctor thought the same thing. As the weeks progressed, I couldn’t walk a straight line let alone ride a bike. Two months later, I still felt like I was stumbling out of a bar whenever I stood up and went back to the doctor In the beginning of July, I had missed the MS ride, still could not get on my bike and was diagnosed with MS.

I started MS therapy and spent a few weeks, in my mind, putting myself in a wheelchair, selling my bike and my skis and picturing my future as forever changed. What I didn’t know then is that my MS diagnosis would forever change my future in the very best way.

In August, I went to my first meeting at the local MS society chapter for the newly diagnosed. My husband and daughter and my parents came with me. Not only did I learn more about MS and all of the services that were available to me and my family but I met a pharmaceutical rep from Biogen Idec that helped me change the course of my disease. I asked him a lot of questions and started to take his answers more seriously when I found out that he had been living with MS for more than eight years. And living well. He was racing his bike, working a high stress job, traveling and his wife had just had her second child. Linde Smith became my new face of MS. I took his card and a free Avonex water bottle and left.

I called Linde a week later and asked him if my husband and I could take he and his wife to lunch. He agreed and my husband I learned more about Avonex and Tysabri but more importantly what Linde and his wife did to make MS work for them. It was a personal story that we needed to hear. From there, I went online to find stories of more MS success stories. I couldn’t find all of the answers I was looking for in a blog so I started my own. I knew I had an important message and important questions and wanted to put them out to the universe in a very world wide web kind of way.

During the first six months of my diagnosis, I went from wheelchair thoughts to fighting for my life. I knew I wasn’t going to die but I was going to fight for the future I had planned, for the lifestyle that I dreamed about. I changed my diet, my sleep habits and the way I responded to stress. The side effects from the interferons made it difficult to feel great but I knew I was making progress.

In July 2007, one year after my diagnosis, I had my first Tysabri infusion. Today, ten infusions later, I feel better than I have in ten years. I still have occasional MS symptoms but my mind is clear and focused, my body is strong and I am ready to fight.

Two weeks ago, a women that reads my blog called and asked me to lunch to talk about Tysabri and how I was doing so well. I was thrilled to help and to make a new friend and to know that I could make a positive impact. I was her face of MS.

So how as MS changed my life for the best?

1. I take better care of myself.
2. The relationships with my friends and family have become unbreakable. We always loved each other but now we appreciate each other in a very different way.
3. I have met the coolest people in the MS world that I would not have had an opportunity to meet without this diagnosis.
4. I am more hopeful and determined than ever.

Last year, my sister in law, Anne- Marie started TEAM TLC and raised $5000 at Ride the Vineyard 2007.Team TLC was awarded “Rookie Team of the Year” Anne Marie has held my hand through so many things and been a vital part of my team, and I knew I had to be a part of hers. I have been training for this ride for two years and I am so proud and honored to do it with all of you.

You are my new face of MS!

The Ride

My trip to Martha's Vineyard was amazing. I got to do everything I planned except for dipping my toes in the ocean. It was one of the coldest rainiest "Ride the Vineyard" weekends ever. The bad weather did not dampen my spirits because the Energy of Team TLC kept me really motivated. Until this ride, I have never been on my bike for more than forty miles (really thirty-eight but I like to round up sometimes). With my team, I finished a one hundred kilometers, sixty-two miles, in the rain and wind.

There were plenty of opportunities to cut the course, or find a ride to the finish but nothing was going to stop me from finishing. My hips tried to stop me. My quads tried to stop me. My neck tried to stop me. Even my mind starting asking questions after about fifty miles. "How Long?" "How much further?" "Are we close?" "Why does an island have so many damn hills?"

Finishing the ride was really overwhelming and I get a little teary writing about it now. It was such a great feeling to finish with my team and to see the pride in Mark's eyes. Bailey and my mother-in law were waiting at the finish with a big hug. I was tired, and I was sore but more than that, I was overjoyed with all of the support that I had from my friends and family through the ride on Martha's Vineyard and in my everyday MS ride.

One week

One week from today I will be on Martha's Vineyard about halfway through my 100 kilometer ride to raise funds for MS research and programs through the NMSS. As promised, I am going to donate $5.00 for each person that has donated to my ride. So far, I have had thirty donations totaling $1510.00!! I will be adding $150.00 to the fund or more if more donations come in this week.

I have been working out to get in shape for this ride. Mark and I riding 30+ miles tomorrow!

I cannot wait to....
Go on a trip with Mark and Bailey
See my East Coast Friends and Family
Have dinner with my Father in Law
Cry when I see my Mother in Law for the first time in a year
Meet new people active in the MS community
Celebrate with all the members of Team TLC
Have a glass of Cava on the Ferry
Eat Oysters, Lobster & Shrimp
Dip my toes in the ocean
Come home and share my great experience and pictures with my parents.

Thank you so much (all of you) for your overwhelming support by...
contributing to MS Ride the Vineyard
driving me to Tysabri Appointments
listening to my fears and struggles
moving me past my fears and struggles
eating meat free dinners
riding with me
starting a bike team for me
calling me from overseas
raising money at your work
raising money at your school
sending me great articles
educating me
fighting with me
loving me.

Extra Curricular Activities

I love reading blogs that are frequently updated. That being said...why has it been almost a month since I last blogged? It's not that I don't have anything interesting to say, I just haven't set aside the time to put it in writing.

I feel like I only have so much time for extra curricular activities. Because I have been devoting much of my time to exercise and photography lately, I haven't had a lot of blogging time. I know, lame excuse!

I can't remember where I left off so I will just tell you where I am today. Last week I had Tysabri infusion #10. It was my best infusion yet with not so much as a hint of a side effect. The Benedryl made me sleepy but I don't think that is something I can control. I think that taking my new herbs has really helped me tolerate the drug better. My energy levels are much better and more consistent and I am really feeling good.

I spent this past weekend in sunny Las Vegas with my sister, her best friend and a few other girls to celebrate the best friend's birthday. We had such a blast. I ate too much, drank too much, stayed up too late and got to much sun and enjoyed every minute of it. Mark joined me on my last night there and we went out for a great Italian Dinner and an exciting Cirque du Soleil show.

(What happens in Vegas stays in Vegas so I can't really give you any more details of my amazing weekend).

Tysabri has really increased my heat tolerance. Last year in Mexico, laying in the sun, my feet would get tingly and I would have to go in the pool to cool off. This year in Vegas, I was in the sun all day and never had a problem.

Now that I am back from Vegas, into reality, I am back to training for the Ride the Vineyard 100k MS ride coming up on May 3rd. If only it would stop snowing here, I could get out on my bike!!

I had my second phone consultation with Dr. John Doulliard, the Ayurvedic Doctor from Boulder and I am really pleased with my progress in following his recommendations. This session we focused on breathing exercises. He explained to me that breathing in and out of the nose, especially during exercise is so important. Scarring happens when there is a lack of oxygen. With deep breathing exercises, I can hyper-oxygenate (I made that word up I think) and avoid further scarring. It makes sense to me as hyperbaric oxygen therapy is used most frequently for wound healing. I am also adding in a new herb that I will tell you about in the next post.

So that's it for now. I will try harder to post more often!

Is it Terminal?

A neighbor from where I grew up in New Hampshire has cancer. I don't know the whole story but I know that she had cancer years ago, was treated with chemotherapy and now the cancer is back. This time, her doctor says that it is terminal. Is she going to give up or fight for her life?

I don't know her very well but I hope she chooses to fight. She is young and has a lot of life left to live. I hope she looks for another doctor or other patients surviving the same type of Cancer that she has. I hope she asks for help. I hope that she looks for inspiration and finds it.

How many MS patients have been told that they would be in a wheelchair in six months? How many of those same patients are running marathons or skiing in the powder today? How many "miracles" do you hear about in Cancer patients beating the odds? Of those beating the odds, how many gave up, and how many fought like hell? The only way to have a chance is to do whatever it takes.

Fighting may include lifestyle changes, doctor changes, new medicines, alternative healing. Fighting may include a total change of heart or change of mind but what other choice do you have? With Cancer, MS, or any other disease that threatens your happiness, your mobility and your life, what other choice do you have other than to fight?

I am in fight mode right now as I prepare for battle. As MS is typically not terminal, I am not fighting to stay alive but I am fighting for my life. I am fighting to maintain the same quality of life that I have right now. I am fighting to maintain my current state of health so that I can hike and bike and ski and do whatever I want for as long as I want. I am fighting to stay off steroids and out of doctors offices. I am fighting to maintain the energy to laugh and play with my family.

It is not terminal until you say its terminal. I am fighting for my life.
Fight with me.

Preparing for Battle - How to

I have recommitted myself to healing and preparing for battle. While I am no expert, not perfect and can not promise that what I do will make you feel better, hopefully some of what I share will be helpful.

Two weeks ago, I had a phone consultation with Dr. John Douillard. He is an Ayurvedic Doctor out of Boulder, Colorado. You can google him or check him out at youtube. He has written several books including The Three Season Diet.

My Sister-in-Law heard about him at Kripalu, a center for Yoga and Health in the Berkshires. After reading The Three Season Diet, and doing a little bit of research, I set up a phone consultation. Between Dr. Douillards book, his advice based on my health history and current health and lifestyle, everything I know to be right for my body and input from my neurologist, I have put together a plan for better health and no more steroids. The plan is will evolve and change but for now, here it is:

1. Wake up with or before the sunrise.
2. Eat three meals a day, no snacks. (70% Fruits and Veggies)
3. Move Daily with a variety of exercise
4. Eat largest meal at lunch
5. Make meals relaxing
6. Walk after lunch for ten minutes
7. Take a multi-vitamin & calcium supplement
8. Take recommended herbs, Ashwaganda and Manjistha
9. Yoga
10. Go to sleep before 10:00 p.m.

I am not perfect everyday with every part but for the most part have stuck to the plan. I haven't walked after lunch that often but am trying to figure out how to fit that in. After ten days, I honestly believe that the Ashwaganda is making a difference. I am also adding back the other supplements that I used to take, but slowly. I am going to follow up with Dr. Douillard in another three weeks and if things continue to go well, I hope to visit him in the fall or next spring.

So, will this plan replace the need for Tysabri or another MS drug? Not yet, but maybe someday.

Preparing for Battle

MS waits until your defenses are down. If you are sick, or stressed or in someway, you are not ready for a fight, MS strikes. After being sick in January, I had a relapse which included vertigo, fatigue and a little bit of weakness. I tried to fight it on my own but ended up with Solumedrol as a last resort to fight back.

Now, almost three weeks later, I am preparing for the next battle. I don't know when it will be, but I know that the stronger I am, the more unlikely it is that MS will attack. I let my guard down over the holidays which contributed to my latest relapse and I plan to take drastic measures to be sure that I do not have to rely on Solumedrol in the future.

The simple decisions I make every day, like what time to get up, what to eat, how much to exercise, who to spend time with, how hard to work, what supplements to take, and what time to go to bed are all instrumental in building strength and preparing for battle. Sometimes I don't make the best decisions because I don't think about how important they are.

I am thinking about it now.