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

 

 

Wednesday
Feb162011

BUYING A LITTLE TIME?

I heard another story about a person with multiple sclerosis who is training for the Ironman in Hawaii. Wow, that's all I can really say. Everyone is affected so differently is mystifies me. Are the disease modifying drugs somehow empowering us to do more and more? There is no proof that they are making us better – their job is to keep us from getting worse. Are we just buying a little extra time then? Is it a good idea to push your body to these limits when you have MS? I believe the mental piece of training for any endurance sport is life-changing and I do know being committed to exercise and healthy living  has certainly improved my life. BUT no one can really tell me how much is too much of a good thing...Are endurance sports a good idea for people with MS? I don't think the doctors really know for sure...so I think it's up to us to let them know the benefits of being active at our check ups. 

Over the last several years I have met a few other people with MS who are able to be quite active. Our Kilimanjaro group is proof of that. I can't wait to exchange stories with these people. I hope they will share their secrets of success.

Monday
Feb142011

HAPPY HEART DAY

Happy Valentine's Day.

Sunday
Feb132011

GOT POLES?

Today I am going to try out my poles....they are quite nice and will be hiking in the area with my sister-in-law today. 

Wednesday
Feb092011

CAMPING BUDDIES

I was so happy to hear from my long-time friend (below on the right), today. Ironically we both were diagnosed with  ankylosing spondylitis in our adult years. He's always been tougher than me and has managed to cope with his disease with dignity. I've always been proud of his accomplishments including being an expert marshmallow stick whittler and becoming a PA. But one of his greatest strengths has been showing me how to persevere when life threw him so many unexpected challenges. My friend, I hope your are well and happy.


Sometimes it's hard to tell the difference between family and friends! I am sure I will draw upon these capming experiences as I climb Kili.

Tuesday
Feb082011

“THE SNOWS OF KILIMANJARO”

We watched The Snows of Kilimanjaro last night. This 1952 film starred Gregory Peck, Susan Hayward and Ava Gardner. The story is based on a short story by Ernest Hemingway. It's definitely a classic from that era. I was a mused by the primitive scenery and filming technique. Wow, have movies come a long way since then. Still it nicely documents life and society at that time. I found myself intrigued by many things like how they glamorized smoking, stereotypes of relationships between husbands and wives, the vintage clothes and how perfectly made-up the women were even when they were on safari. The mountain was really nothing more than a backdrop and I can't wait to see it with my own eyes.

 

Monday
Feb072011

HOW MUCH IS TOO MUCH?

I am preplexed by this question. I am wondering what my fellow MS Kili climbers are doing to train for our climb in July. I have found lots of ideas on the web and suggestions of hiking with weighted packs. But, how much and what exact activities are all you people with multiple sclerosis really doing? Do you do it every day? How are you preparing for the altitude if you don't have altitude where you live? 

Because of my blog the universe knows my training schedule so far and the fact that I am training for a half marathon in May, but is that enough? I hope you post your comments and suggestions.

 

Sunday
Feb062011

GO PACKERS

What kind of a Wisconsinite would I be if I didn't acknowledge the great super bowl game tonight? It was an exciting game to watch and everyone at my house was happy that the Packers won. Josh was the biggest fan at our house with his cheese hat on!

Saturday
Feb052011

17 TIMES

My mother-in-law shared and article from the Milwaukee Journal Sentinel this past week. It features the Macon Dunnagan, well know for climbing Mount Kilimanjaro 17 times and recently climbing Kili 3 times in just 27 days. 

One of the tips in the interview was the necessity of wearing antimicrobial base layers. This technical fabric wicks wetness away from your skin to keep you warm and comfortable. The big benefit is the antimicrobial part....no odor. And that's a benefit for the whole team of climbers. : ) 

Dunnagan is featured in video footage on the Polarmax website. Check it out.

Thursday
Feb032011

ONLY TIME WILL TELL

Tomorrow my daughter, Rachel will be 18. I couldn't be prouder. Rachel is an incredible young woman and I hope that she truly has the foundation she needs to be successful in the world today. There's really nothing more I can do except be a resource and continue to love her more than she will ever know (or understand). I often wonder how having a Mom with multiple sclerosis has affected her.

I think she's grounded and don't think she has ever missed out on anything because of my disease. If anything has negatively affect my daughter it's probably my workaholic tendencies. Still I watch carefully and hope that MS will only show her how to be stronger and wiser every day.

So just to check in with her I hollered to her over sounds of American Idol and asked if she felt my MS has affected her negatively in any way. At first she laughed and said “probably” and then said “no”, she really couldn't think of anything, but would “let me know.” All I can say is I am sure she will.

Only time will tell.

 

Tuesday
Feb012011

VACCINES

I am sitting here thinking about all the getting the ready for the shots required to travel to Africa. My neurologist indicated to me that people with MS need to be careful about the Hepatitis vaccines. The hepatitis B vaccination seems to be a hot topic because there was speculation that hepatitis B caused MS. That myth has been officially busted. So I need more info.

I thought it would be helpful to see what the national multiple sclerosis (MS) society has to say about vaccinations and MS. Here's what I understood...if you have MS don't take any live-virus vaccines. Inactivated vaccines are generally considered safe even if you are taking one of the interferon medication like avonex.  

Here's what our expedition group Alpine Ascents has to say about necessary shots for traveling to Tanzania:

The most common considerations are 1) polio and tetanus; 2) Hepatitis A; 3) Malaria prophylactics. If you are coming from another east African country (transit not included) such as Ethiopia and Kenya, climbers must have a Yellow Fever shot and certificate.

Climbers should bring a medical kit which can include prescription drugs and Diamox for altitude.

More after I meet with my primary care physician. I must say that I am leery of all vaccines and prefer a more holistic/natural approach to health in general.

Monday
Jan312011

MONDAY

It was a Monday for sure. My daughter was home with a fever and I was reminded of debilitating corporate process and committees can be. I got through lots of obstacles today and am happy to be settling in to read with Joshua (maybe a little Spanish if he's up for it...we will see.).

Sunday
Jan302011

GOOD FRIENDS

Just got back from dinner with friends. We don't see each other often enough, but when we do it's always a good time. I am amazed by how easy it is to reconnect. We each tell our stories and catch up on the months that have passed. We laugh, we tear up a little and support each other. There is never enough time, but we talk about real life – not just the surface stuff. It renews our friendship and reminds me what a wonderful gift friendship is.

Thursday
Jan272011

NOTHING

Every once in a while I need to just plain slow down a little and relax. I am hoping to do that this weekend. I am not good at slowing down either, but it's time to unwind and recharge. So, if you ask me what I am doing, the answer is  –  nothing!

Wednesday
Jan262011

TWINKLE TOES

It's official, my neurologist confirmed that my toe issue is my MS. 

My left big toe actually points up randomly when I run (right around 3 miles) and it stays that way for the entire run. It feels weird and I can't make it stop. I get blisters on the next toe from the big toe. And when I stop running I get cramps for hours. I think my feet as screaming pedicure.

Still I am committed to running and this is just a bump in the road. Actually it's not even a new bump for me because, I've been annoyed by this for the last couple years. I just get lost in lots of other thoughts when I run and don't think about it again until I see the blisters. I just got around to asking about it again. (I have asked before, but my doc finally heard me yesterday).

I have been contemplating these toe socks (Injinji Tetrasoks) I heard about at the Fox Cities Half a couple years ago. AND I am kinda intrigued by the barefare running shoes. I will have to try them especially now that I see them in these funky colors...If you're gonna have a goofy toe you might as well deal with it in style.

 

Tuesday
Jan252011

NOT THAT SUSIE WEBER

Just for the record, I am NOT the legendary Susie Weber who biked herself to the hospital to give birth! I have gotten a few inquiries about this and thought I should clear things up.

While we both are from Wisconsin and have the same name, I drove myself in our Jeep when my water broke with baby number 3! My husband was at work at least 30 minutes away, my other two children were in school and it seemed like the thing to do. 

I am utterly impressed with this woman's commitment to fitness during pregnancy…WOW!

Tuesday
Jan252011

Facebook

It was fun yesterday to meet a couple of my fellow climbers yesterday via Facebook. Thanks for reaching out! I didn't realize I need to sign up for my travel shots already! Guess I better get that on the to do list. 

Sunday
Jan232011

GREEN BAY HALF 76% FULL

Just finished registering for the Cellcom Green Bay Half Marathon May 13-15. It'll be my 6th half since I started running. I am looking forward to it, but aspire to run the full marathon someday. I am not a star, but feel fortunate that I am able to participate considering my health issues.

Because the Kili climb is my priority and I still tweak my achilles every so often I am going to have to wait another year do the full marathon or who knows....maybe the Whistlestop in fall (October 14 & 15 starts in Iron River, WI and finishes in Ashland, WI on the south shore of Lake Supeior)? 

Saturday
Jan222011

BACK ON TRACK

Since my Avonex finally arrived from Curscript I was able to take my Friday shot. (Pharmacy/doctor issue caused me to miss last weeks dose.)

Unfortunately, it was like starting over and I suffered through some side effects for several hours. The other surprise was that the needles were different this time. Last time I had the option in my package of a finer needle. This time is was  only the thicker one. I will see my neurologist Tuesday and hope to find out what the heck he's thinking. 

Today I got the chance to read the bios of my fellow Kili climbers. They all sound like great people and many of them are amazing athletes. Here's a link so you can see the 2011 Empowerment through adventure team.

Friday
Jan212011

RAISING FUNDS, RAISING AWARENESS

On Monday, January 24 I am going to attempt to start offering limited edition prints of the artwork I created for just for this blog. Seems I can't stop there. I am also going to offer some fun t-shirts, etc. So you can take a look now if you want to see a few things, but stop back on Monday and there will be an order form!

Wednesday
Jan192011

WE BOOKED OUR FLIGHT TODAY!

Another step closer. We booked the flight, next is getting the visa!