WHO IS SUSIE WEBER?

It seems my life is always pointing me in some new direction. I tend to follow my heart and try to embrace and recognize new opportunities when they present themselves. Life has certainly provided me with obstacles along the way. My life changed forever when I was diagnosed with Multiple Sclerosis in 1987.

I used to say that I’ve worked very hard to never let my MS define me. How ironic is that? I realize now that that’s exactly what it’s done. It DOES define me – not by the negative aspects of the disease – but by the  positive way I tackle life. You don’t need to know that I have MS to recognize that I am very compassionate and have an extraordinary amount of personal drive. It would seem that MS has actually made me a better person.

My 12-year-old son is on the autism spectrum, my daughter has been struggling with ADHD since first grade and my oldest son became insulin dependent at age eight. Because of my experience with MS, I am better equipped than most to endure  these challenges and guide my children over their latest hurdles. In turn, they have become amazing people in and of themselves.

About 6 years ago, I decided to try exercising again. I wanted to see if my body would cooperate. I could barely walk a mile when I started, but have since run 7 half marathons. I am not a star, but find that I am a positive role model, especially when I influence others to be healthier in some small way.

Until now, only my closest friends and long-time associates are aware of my health challenges. I was afraid that learning about my disease might make my business associates and clients apprehensive. I am writing this blog to share with you what's  possible with MS, how I'm dealing with it on a daily basis and what I've learned from my MS peers 

I had the great opportunity to participate in the Leap of Fairth MS/PD expedition to Mt. Kilimanjaro in July 2011. I got me out there sharing the story of what's possible with MS. I am motivated to raise awareness for the disease and learn more from my MS peers everyday. MS has made me stronger in ways I cannot comprehend. 

 

CYBERCAST LINK FOR 
THE MS/PD KILIMANJARO
CLIMB (July 10 - 24, 2011)

I believe we are Team 2


PRINTS

Limited edition prints signed by Susie Weber are still available.

 

MUSIC check out the song

 

SUSIE'S EVER-CHANGING BUCKET LIST

Here it goes (in no particular order)

Climb Mt. Kilamanjaro

Half Marathon on the Great Wall of China

Complete a Triathalon

Draw every day in a sketchbook. Just for me, not for anyone else.

Spend more time with my kids 

Help my parents

Garden (not just in spring, but all summer long)

Submit a short story to a magazine

Take voice lessons (I am sure some of you are amused by this)

Practice Spanish with Josh

Run a full marathon

Travel more

Cook new recipes

Advocate, Advocate, Advocate (for those who cannot and for causes that I believe in)

World peace

Collaborate with Sher on the books we have been discussing

Match all the socks in the basket

See more of the USA

Shoot a pistol

Go fly fishing

Trail run in the Italian Alps

Do Service Work

 

 

Thursday
Jun232011

WELLNESS

I took the night to process everything that transpired at my doctor's appointment yesterday. So here's the scoop. After having an MS set back at the end of March, I finally decided to change neurologists. But where should I go? I've learned about (and met) several neurologists over the years that are well-known for specializing in multiple sclerosis, but I felt this time a referral from a fellow MSer would be the best for me. And that's when I decided to call Lori Schneider to see who she might recommend. Lori is one of the few active people with MS that I encountered that seem share a similar list of symptoms and philosophies. Lori recommend a specialist at UW-Madison neurology clinic, Dr. Luzzio. I jumped through the insurance hoops and scheduled the first available appointment which was yesterday – only a 3-month wait! My goal was to get some sound medical advice before the Kili climb. 

I left Jackson at 7:00 and was in the city at about 8:50. I was supposed to be at the clinic at 9:00 for registration and my appointment with the doctor was to begin at 9:30. I should have been right on time. But, there was a horrible bus accident in the square that caused me to be re-routed. Since I am not too familiar with Madison I did my best to use my google map print outs and iphone gps to navigate alternate routes. Everything I tried got messed up and traffic was standing still. At 9:15 I finally called the clinic and was on the phone until about 10:00 with their “directions person”. Finally my husband, AKA Mr. Map, piloted me in. I was 1.5 hours late for my appointment. Dr. Luzzio was accommodating and took my history for about 30 minutes and asked me come back after lunch to finish up our appointment. 

While waiting for the second half of my visit the Wisconsin MS Chapter's Education and Outreach Director introduced herself and we had an interesting exchange. We talked about the benefits of exercise and discovered that we both have discovered a love for running. It was a great opportunity for me to talk about how tremendous I think the re-brand of the MS Society as a whole has been and what a big fan of their new marketing efforts I am. When I was diagnosed back in 1987, the messaging was anything but uplifting and this new approach feels perfect to me.

Dr. Luzzio is easy to talk to and I enjoyed how effortlessly he could float between mini chemistry lessons (diagraming molecules to demonstrate for me the mirror-imaging concept of provigil vs.nuvigil) and inquiring about topics like incontinence and sexual disfunction. He tackled all the hot buttons worked hard to put the pieces of my MS puzzle together. He encouraged me to continue using ALL parts of my brain and liked the fact that I have become more physically active than ever before in my life, am artistic and have successfully run my own business for 20 plus years. That was reassuring as I have real concerns about the cognitive effects of MS. So did you hear that? Exercise your whole brain! It's a good thing! I understand he tells his patients to do stuff like draw something in their house everyday as part of their therapy. 

He helped my understand that the cramping issues I am experiencing are without doubt multiple sclerosis. 
But, I was most fascinated at how astute he was with the MRIs. My previous neurologist usually just read excerpts from the imaging report. This doctor showed me the largest of my spots and could tell me that it was most likely affecting the left side of my body. He also shared with me a comparison of my 2004 and 2010 MRI. He showed me that several of the spots from 2004 are now gone in my 2010 MRI. I am not kidding. I saw it with my own eyes. (Wish I would have snapped and iphone photo for my Dad!) He said there is no scientific explanation for this and I think that's the part of all of this day that will forever keep me hopeful. 

I keep asking myself what's different in my life since 2004. Is it my new found love of running, is it my commitment to healthy living, is it the vitamin D? Was it my brief encounter with copaxone? Because I am a religious person I cannot overlook the possibility of divine intervention. 

Don't misunderstand. I still have a gazillion other plaques in my brain and continue to have MS. But I truly feel even more inspired and hopeful for those of us working hard every day to win our battles over MS. 

(Hey Lori, thanks for the referral!)

 

Wednesday
Jun222011

NEW NEUROLOGIST IN MADISON

It toook forever to get here, but today was the day I met Dr. Luzzio from Madison. So far I like everything about him and feel like he answered so many questions I haven't resolved previously. More tomorrow.

Tuesday
Jun212011

ANOMALY

I just recently started seeing a new chiropractor and was complimented when he called me an anomaly. Seems with all my health history (multiple sclerosis, arthritis, age, etc.) he was quite impressed with my current state of wellness. That never seems to happen to me and was a nice change to the usual responses I get. 

When I told him about the MS Kilimanjaro climb he truly fascinated. What a nice experience.

Monday
Jun202011

COMPRESSION SOCKS

Thinking about wearing some of this on the climb....

http://www.cepsocks.com/

 

Friday
Jun172011

SOAP?

Yesterday at lunch we were discussing leg cramps and to my surprise my friend had a new remedy to try. I am pretty sure she might be the smartest woman alive, so I was amused by how she seemed almost embarrassed to tell me her solution. The secret remedy is a bar of soap in your bed. Seriously. We laughed about it and I googled it. People swear all you need to go is put the soap at the foot of your bed (I understand it's easiest to place it between the fitted sheet and mattress pad. 

I am going to give it a try (we only have liquid soap at are house : )) and if it works I am going to toss a bar into my sleeping bag on the Kili climb! 

Thursday
Jun162011

More Than a Mountain Song Available

Don't miss the chance to hear the song that was written for our MS/PD Kilimanjaro Climb. It was written by two of my Kili teammates Gina Anderson and Suz Thomson. Take a minute and enjoy. Here's the link.

PS-Gina is using this a way to raise funds for the climb. It would be great to support her.

Tuesday
Jun142011

HAT HEAD

Finding the right hat for this trip has been tough for me. With my MS they say I need to keep cool, but the minute I wear a hat I start to melt (long hair, hot head) The only time I ever wear a hat is when I ski and it's below zero. Otherwise I'm a headband gal. Since we won't be able to shower regularly I expect my hat will become one of your favorite accessories on the mountain.

So I think I found the one. Sounds like it will travel well, provide some sun protection yet keep me cool  and feel more like “me” than a “chick” baseball hat.

Check out this website.

Monday
Jun132011

ALWAYS MORE TO LEARN

Last Saturday I spent some time with my friend's Mom in the kitchen doing dishes. We always talk about the latest and greatest news of our families and of course the conversation eventually gets down to what's going on with our latest MS challenges. 

I knew this woman for years before I met met her. Her son and I spent countless hours together in college and would talk for hours while we worked on our projects. I remember learning bits and pieces of his life and what a strong woman his mother was. 

By the time my friend got married I had been newly diagnosed with multiple sclerosis and remember watching his proud Mom walk down the aisle with such strength of character it brought tears to my eyes. Until that moment I had forgotten that she had MS. Every step seemed to take courage and I wondered how my disease would impact my life.

Fast forward 25 years. I continue to learn a lot from this woman. It seems like every time we talk she reveals some aspect of the disease that I need to know. This time I finally understood what she was talking about regarding spasticity. Because she's lived through so much MS I am lucky to have such an amazing resource. There's always more to learn.

She's in a wheelchair now but still maintains a level of spunk that I like. She married her high school sweetheart and the two of them are the biggest possible fans of children and grandchildren and attend as many activities as possible. (BTW - I understand they celebrated their 50th wedding anniversary a few days ago.)

I told her about the upcoming MS/PD Kilimanjaro Climb and that I would be climbing it for her and my many other MS peers. Our climb is so symbolic. The mountain metaphor is easily understood no matter what your daily challenge may be. 

The next couple of weeks I need to figure out a way to honor all my supporters and MS peers properly. I understand that some of my fellow climbers are bringing banners with names on them to the top for photo opportunities. Others are collecting personal notes from their supporters to read at the end of each day for encouragement, etc.

I am not sure how I will do this yet. Please let me know if you have any suggestions.

Friday
Jun102011

30 days until the big adventure. Even though I have most of my big gear (thanks to my supporters) I can't believe how much I still need to collect in the next couple of weeks. (stuff like energy bars, wipes, baggies, sunscreen, etc.)

It was so nice to receive the pocket knife with all the right gadgets including the cork screw! Check it out. Thanks so much CT!

And Macy has come to love the new Cosmic Down sleeping bag from Kelty.


Sorry I disturbed your nap Macy!

Thursday
Jun092011

JANESVILLE HIKE

Today a group of from the Wisconsin area connected to hike together before we head out July 10th for our climb in Tanzania (MS/PD Kilimanjaro Climb). Here are couple of candid iphone photos from our pre-climb get-together. What a great group!

Left to right: Niel, Kristy, Jeanne, Lori, Tina and Colleen.

Some of the faces for the upcoming MS/PD Kilimanjaro 2011 Climb!

Wednesday
Jun082011

CHRISTMAS IN JUNE?

Well, that's what it feels like. Even though it's been close to 100 degrees the last several days, it feels like Christmas for me. 

Today I receive a couple boxes from Kelty and Sierra Designs containing some of the essential items I will need on the MS/PD Kilimanjaro Climb. I love it all...thank you so much!

 

Gear and apparel from Sierra Designs and Kelty.

 

 

Monday
Jun062011

MY GEAR HAS BEEN SHIPPED

Sounds like my Kelty and Sierra Designs gear and apparel has been shipped. Can't wait!

Sunday
Jun052011

ANOTHER MILESTONE

Another milestone. My daughter just graduated from high school yesterday. It was a beautiful day and I think she's ready to carve out her future. I couldn't be a prouder Mom if I tried. Funny how children grow up despite life's obstacles. Congratulations!

BTW - I have to mention that her 3200 relay took fifth at State this past weekend, too! 

Graduation 2011 (Susie Weber, Rachel Weber, Terry Weber)

Thursday
Jun022011

CYBERCASTS FROM KILIMANJARO

So here are the official links for cybercasts from Alpine Ascents regarding our climb.

CYBERCAST – Audio Cybercast

We are planning to cybercast your expedition over the world wide web.  The format will be similar to our previous cybercasts of the past, with brief daily dispatches given by the team via phone with audio posted on our website. If you have any objections to having your name included in the cybercast as a team member, please contact us as soon as possible. The address for the cybercast is www.AlpineAscents.com/kilimanjaro-cybercast.asp  Please let your family & friends know that the lack of a current cybercast does not indicate a problem with the team.

Wednesday
Jun012011

FORTY DAYS

Forty days until departure! It getting so exciting. Everyday there are emails from my teammates. Everything seems to be coming up from whether or not some people are comfortable getting the yellow fever shots to what to do with batteries so they hold up in the cold. BTW the they're recommending foot warms for batteries!

I am starting to pile up all the stuff I hope to pack in an effort to remember everything!

Sunday
May292011

SAD NEWS

I just learned that one of the guides for the upcoming MS/PD Kilimanjaro climb, Suzanne Allen tragically lost her life in Danali National park. Please read the article. 

 

“She's packed more life into 34 years
than most people do in 60. She lived life,
and there's no regrets.”


– Tim Allen, Suzanne's father

Friday
May272011

EVERY DAY IS A GIFT

As I continue to train for the upcoming MS Kilimanjaro trip I am constantly reminded how fortunate I am to partake in this adventure.

Everyday I push myself in my workouts and I think about the times I could hardly carry my kids because I was so weak or the times I lost my eyesight. I remember praying to stay awake and functional enough until someone could help and I could deal with the extreme fatigue that plagued me. I still have areas of my face that I cannot feel at all and vividly recall what it felt like the first time the right side of my body became numb in 1987. I drag my right foot when I am super tired and my speech can become slurred. I get muscle cramps in my legs and tingling and burning sensations throughout my body that come and go as they please. But some how all of those experiences just make me work harder and more thankful each day I can still do it.

But all that I experience seems insignificant compared to my peers with MS that are unable to walk without assistance or have lost control over their bodily functions. Some people with MS have severe pain 24/7 and even more challenging is the possibility of cognitive disfunction.

There are several different types of MS and I am fortunate enough to have one of the less severe forms of the disease. Still I cannot even imagine living disease-free anymore. I think the MS has made me more driven and determined to be successful in life than I can explain.

Several years ago I decided to see if I could regain some of the physical fitmess I had lost. And I just finished my sixth half marathon this month. While I am not a star athlete I really enjoy and even look forward to my workouts. I so appreciate that I have gotten to this level of fitness and consider every day that I can still excerise at this level a gift both mentally and physically.

So when I work out I dedicate my miles to my family and friends and yes, to my fellow MSers. I want to be strong and encourage others with MS to take care of their bodies and maybe even inspire them to work at feeling better. Every day truly seems like a gift.

And when I finally make it to Mt. Kilimanjaro I will be climbing for all of us with MS.

 

 

Wednesday
May252011

HAPPY WORLD MS DAY TO YOU, TOO!

So it's World MS Day today. Did you know? Here's a link to check it out. 

It a day acknowledged by 67 countries and is a way to raise awareness for MS just by mentioning it. The above organization estimates that over 2,000,000 in the world have multiple sclerosis. 

The leader of our MS Kilimanjaro climb, Lori Schneider climbed the Eiffel Tower (all 1665 stairs) as part of the World MS Day events in Paris, France. 

Way to go Lori!

Wednesday
May182011

20 POUNDS

I think I have about 20 pounds in my pack and am off to conquer some hilly terrain to see how much altitude training I can simulate here in Wisconsin! Now that the half marathon is over I need to really focus on training with a weighted pack.

Monday
May162011

PERSONAL BEST

It's interesting to me to talk with runners after events like the Green Bay Marathon. I am 46 and didn't even know I could do this until 2008. Funny how different my goals are in comparison to my peers.

I sat with a friend after the race who has been an amazing athlete her entire life. We huddled together from the wind and cold on the asphalt waiting for the full marthoners to finish. She was so disappointed in her run although she was sleep deprived and taped for injuries. Here she's disappointed in her performance and I think she's my hero because she toughed it out and ran smart. She resisted further injury and encouraged her friend to do her personal best. As a matter of fact this run was never about her at all. It was always about empowering her friend to do it. How bittersweet the experience was for her. I gently reminded her what a great role model she is to have chosen to run easy this time and listen to her body. The truth is we both knew she could have run through the pain and probably PRed. 

As for me, I am thankful every time I finish and realize I can never compare myself to these “real” athletes. Multiple Sclerosis and Ankylosing Spondylitis challenge me everyday even when I am not running. But it's events like this that give me more strength and chance to inspire others.