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

 

 

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Friday
Jan142011

MORE THAN A LITTLE TIRED

I'm tired. No, really. People just don't know what to think about it either. They mostly just think you're tired and you need more than an average amount of sleep. And it's true, many of us (people with Multiple Sclerosis) are tired – fatigued beyond what most people can comprehend – every single day. And, sleeping does help, but it is not enough. I am dragging my butt, head-bobbing tired even when I wake up. If I allow myself to I am fall asleep instantly. (I slept for 4 days once, when I was first diagnosed and I still woke up tired. How about that!)

I am obsessed with putting forth my best image and not sleeping my life away. I am to blame for the fact that most people don't even know I am struggling with this nagging symptom of MS. MS can really be an invisible disease.

I have been called the “Queen of Denial“ and it's true…well partially true. I think it's my best coping mechanism. My approach is sort of the “power of positive thinking” on steroids. I believe I will be okay and I get through. I don't allow myself to think otherwise. I believe it's my responsibility as an MSer to do everything possible to avoid being a burden to my loved ones. That way when something more significant (like vision loss, speech issues, tremors, etc.) than my daily MS struggles pops up my support people don't mind helping. I am sure they also appreciate my “no whining” rule, too. I don't whine about my MS either. It's just part of who I am now. (What kind of an example to my kids would I be if I complained all the time anyway? And nobody likes a whiner)

My quality of life improved significantly when I started taking Provigil several years ago. Provigil is a drug widely used to treat narcolepsy and now they realize it can help people with MS, too. The recently released Nuvigil While Nuvigil did not work for me (made me horribly thirsty and still tired) my closest MS friend takes Nuvigil and loves it. I understand that insurance companies are more apt to cover Nuvigil than Provigil too. Seriously, taking this med was life-changing for me. 

Don't get me wrong, I am still over-the-top tired, even with the meds, but I can put in a solid, productive day more easily. Just sharing.

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