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

 

 

« DON'T SWEAT IT | Main | NO NEWS IS GOOD NEWS »
Monday
Mar282011

WHAT'S GOING ON?

Finding my way and trying not get too frustrated by the horribly painful episode of muscle stiffness the developed in my legs Saturday night. I thought last week was challenging, but have to say last week seems mild in comparison.

I cannot believe the pain and discomfort I experienced. Very atypical symptom for me. I wonder if it's the avonex or if it's the anemia or could it possibly just be an MS episode?

Multiple sclerosis has such a huge range of symptoms and I was reminded how unfair it can be too. I ran into the parents of a young woman I met years ago. Their daughter had MS and I was sad to learn that she has been enduring so much more than I. Her mother looked me in the eye and said how can we possibly have the same disease? I didn't know what to say at first. But I did say that I guess we are all different and that I was sorry that MS has taken so much from such a lovely person. And then I was happy to find out their daughter is one of those people who is traveling and living despite the challenges. I think she's lucky to have had such great parents, too.

Anyway, I left a message for my neurologist and called the support line for avonex. Avonex was quite professional and suggested that my doctor may cut back my dose for a while, but really didn't have an explanation. I was then transferred to person that reports side effect of avonex to the FDA. Interesting…I had no idea they did that.

Today I am much better although I am quite exhausted. I couldn't run my 9 miles yesterday and that isn't my style. So I hope I can get my miles in this week to stay up on my training schedule. Kilimanjaro is my ultimate goal so I need to stay focused and stay healthy. I think it was good to be reminded how fortunate I am to be able to live such a full life.

 

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