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

 

 

Friday
Mar252011

NO NEWS IS GOOD NEWS

Still no answers about this anemia/internal bleeding issue. The colonoscopy seemed unremarkable although the doctor did take some routine biopsies. The next step is to swallow some sort of a pill with a tiny camera in it that wirelessly sends images to a device for the review. No news is good news.

Wednesday
Mar232011

DONE

The worst is over. I think I can finally get some sleep – I am done drinking the prep stuff for tomorrow's colonoscopy. What a pain.

Monday
Mar212011

LISTEN TO YOUR BODY

“Listen to your body,” people say that all the time and I am trying to do that. I have been taking it easy for the last several days (I might add not be choice, either). I went for my vaccines for the trip and had some other routine blood work done and found out I am very anemic. My eight miler was grueling and I have been really wiped out so I guess it makes sense. Had to have a 2-hour IV last week and have been too weak to do much training. Not sure I will be able to run for a couple more days. Need to set up an appointment for a colonoscopy this week as they suspect some sort of internal bleeding. I've been fighting low iron and anemia for a couple years,, so now maybe we will get the problem resolved. 

Guess I better listen, my body is talking pretty loud these days.

 

 

Wednesday
Mar162011

CRAMPS AND PICKLE JUICE

Did anyone else read that blurb of copy in Runner's World that suggested drinking pickle juice to stop leg cramps? I did. 

I get foot cramps and leg cramps regularly (lots of people with multiple sclerosis experience this , too) and a little relief would be nice. And so I wondered if eating a pickle a day might be the replacement for the old apple a day strategy. Last Saturday at the Milwaukee Sport Show I ate one of those gigantic dill pickles and guess what? no cramping that night. Coincidence? I am going to put it to the test.

Apparently pickle juice relieved muscle cramps 45% faster than drinking no fluids and 37% fast than water alone. But here's link to a pickle juice sports drink...who knew?

I also googled home remedies for “leg cramps” to see other suggestion remedies that might work.

  • 2 tsp apple cider vinegar to 1 tsp of honey -- guess the vinegar is high in potassium
  • mustard - a couple spoonfuls - an old coaching trick - mustard has acetic acid and helps the body make more acetylcholine to stimulate your muscles...work just like the pickle juice.
  • Quinine/tonic water -- drink 4-8 ounces before bedtime.

Tuesday
Mar152011

MS = 

Nice video from the National MS Society.

Sunday
Mar132011

MS Awareness Week

Tomorrow kicks of the week of the year dedicated to raise awareness of multiple sclerosis. Get involved and share your stories of how MS has impacted your life. 

Wednesday
Mar092011

NEXT WEEK

Next week is MS Awareness Week. Did you know? 

May 25 is world MS Day. This year's focus is MS and work.

 

 

Monday
Mar072011

NEVER GIVE UP

The second half marathon I ran was in the Fox Cities, in 2008. I promised a good friend that I would run with her and help her train. She excelled and finished well ahead of me. We still run together when our lives permit and are signed up for the Green Bay half this May. 

But the most memorable part about this half was the feature in the morning paper. The story was about a local woman who was participating with a hand-crank wheelchair. The real story is that she was the top female runner for many years and continues to participate. She has multiple sclerosis (MS) and doesn't let it stop her from partaking in her sport of choice. 

As I read the article I was a bit freaked out. I didn't want to think about my MS — not on race day. As selfish as it sounds, I didn't want my disease floating around in my head as I pounded out my 13.1. Then I suddenly knew I had to meet her. 

She arrived surrounded by a flock of people and wheeled up about 10 feet from where I was standing. It was fate no doubt. I approached her and said I had read the morning paper and was inspired. This wasn't really true. I was more curious than anything. I wondered what she would be like. Her body was fit and frail at the same time, but her eyes had strength. As she grabbed my hand hard I could feel her shake. I told her that I had MS too and was hoping to finish. That's when she spoke. Her words were labored and slow and time stood still. I knew she was telling me to never give up and keep running as long as I can. But I fixated on how difficult it was for her to get her words out and my eyes started to well up. All I could do was to say “thank you” and find my place in the sea of people.

The race started. And, this woman captivated my thoughts throughout the race. I thought about her perseverance, contentment and strength. She still inspires me. I finished and decided I would continue to run or hand-crank. “Never give up” sounded like a good plan.

 

 

 

 

 

Sunday
Mar062011

LIFE HAPPENS

I understand that one of one our MS climbers will not be able to join us on the climb, but we are lucky to have another member ready to join us. Check out our team!

Saturday
Mar052011

MY FRIEND'S MOM

The very last house on the end of our street was the house of one of my dearest childhood friends. I can still recall the smell of fried bologna sandwiches and spaghetti sauce that lingered in the kitchen. We have so many memories from those early years and I smile when I think about the fun we had. The sleepovers, playing Barbies, riding bikes, watching reruns of I Love Lucy – we lived at each other's houses and had many adventures especially during summer vacation. Even though our lives took us in different directions by the time we finished middle school, we will always be friends.

As an adult, I have come to treasure the moments when I see her mother. Our Mom's have continued to be friends all these years. The way their personalities balance each other out is priceless. It's funny how neighbors become friends that become family. 

My friend's Mom has a great big heart and a spunk that you just have to experience to understand. When she's on a roll her language is so animated you can't help be laugh so hard that you cry. She's hilarious but I think it's her no-nonsense way of caring and how you know exactly what 's on her mind that is so endearing. No matter what the subject, it comes straight from her heart. Once you meet her you will remember her.

I often think about the many trials and triumphs their family endured. The joy of watching their youngest daughter beat childhood cancer, marry and have children. The grace by which they live with her passing because the cancer came back. The courage she possesses as she continues to survive breast cancer, quadruple bypass, high-risk surgery for aortic aneurysm, and a litany of other intertwined and complex health issues. I never expected the unsung wisdom and strength of this woman to influence my life, but it did.

Thursday
Mar032011

MILESTONES

Just got back from taking a look at studio apartment my son will be renting in June. It's just great and I can tell he's looking forward to having his own place. Time keeps slipping away, yet I am a proud Mom.

Tuesday
Mar012011

MS IN THE WORKPLACE

I had a nice discussion yesterday with one of my long-time clients that also has multiple sclerosis (MS). He's one of the people in my life that has influenced me to share me story. It's been great to watch him gracefully integrate his story into his career without issue. As a matter of fact I believe it's made him a better and more respected leader. Thank you for all the encouragement, John.

Monday
Feb282011

MS CURE FUND

Our fearless leader, Lori Schneider has set up fund raising opportunities for our group's climb with the MS Cure Fund. Lori keeps helping us all raise awareness and continues to advocate as our group seeks sponsorship and financial support. Today I posted my page on our group site.

Sunday
Feb272011

NAPPING

There is nothing as rejuvenating as nap on a Sunday afternoon.

Saturday
Feb262011

INFLAMMATION

My family will forever be on a quest to find holistic solutions to the challenges of bigger health issues like multiple sclerosis (MS) and interstitial lung disease (ILD) to name a few. Because there are not concrete causes or cures for diseases like these we all keep our eyes and ears open to new solutions. 

Recently my Dad, who is fighting interstitial lung disease, went to Mayo Clinic and found out that the use Proteolytic Enzymes to treat the inflammation associated with diseases like MS and ILD can be effective. Here's how I understand it:

• These enzymes cannot regenerate damaged tissue, but can slow and possibly stop that process. 

• By reducing inflammation overall circulation improves and benefits the whole body on a cellular level. Sort of clears out the bad stuff and gives the body a chance to get back on track.

• Because the enzymes breakdown hard and fibrotic tissues they prevent additional sclerosis to occur. 

• Blood viscosity is lowered because these enzymes are blood-thinners. Sort of like the benefits of aspirin without the gastrointestinal side effects.

• It will take many months to see the benefits of taking these enzymes and there are no guarantees.

I've read many articles about eating the right food to keep inflammation like “The Zone” diet by Dr. Sears. I think there is validity to including proteolytic enzymes into your daily routine but think if you're really serious you should also choice to eat foods that support the reduction of inflammation.

Thursday
Feb242011

BROKEN MUGS : (

Thanks to one of my gracious and generous mug purchaser, today I learned that bubble wrap is definitely a smarter choice than shredded paper! I sincerely hope this is the only incident, but please just let me know if anyone experiences that same problem -- I really do need to know.  : )

Wednesday
Feb232011

MS HUG

Somehow I knew I wasn't having a heart attack, but the chest pain and difficulty breathing was debilitating to say the least. It was the 2nd episode within the last three months. Still the pain was really intense and the symptoms led me to the doctor. My heart tests were all good, including the treadmill stress test where they inject you with radioactive die and take picture with something that looks like a cat scan but called the “gamma camera”.  

So what the heck? I am glad my heart is healthy  – I run almost everyday and am really trying to be fit and healthy. My doctor suggests it's musculoskeletal in natural. I read a lot about musculoskeletal chest pain and it really didn't seem right to me. I am not sensitive to touch and list of other symptoms didn't match up from my perspective. That's when I ran across an article that described the “MS Hug”. Bingo. I believe that's it. I've never heard of this before, but I believe it is what I am experiencing. 

I can't believe there yet one more symptom linked to MS, but I guess it's good to learn something new everyday.

Tuesday
Feb222011

PAIN AND MS

Some people believe multuple scloersis is a pain-free disease. It's just not true. 

The pain differs from person to person – just as the symptoms of the disease vary. MS pain can affect several areas of the body at once and the duration and triggers fluctuate as well. For me I frequently get intense burning throughout my body. I also get tingling sensations in my extremities, electric-shock type sensations, pain from spasticity, acing joints, muscle tightening and the latest issue has been defined as musculoskeletical. Others talk about aches and sensations of intense pressure. 

It's the nervous system overreacting to the disease and trying to signal the body to avoid the source of pain. But our source of pain is not possible to localize and correct....it's a neurological misfire. Misfire or not, the pain is real. The only way to cope is to practice the mental game of pain management and coach yourself through the pain.

Because I also have Ankylosing Spondylitis, it's tough for me to discern which autoimmune disease is causing what. Either way it's neurological and you have to accept it and cope with it.

There are several drugs available like Neurtin but I think it's best to just learn some pain management techniques and only take the meds when it the last resort.

 

Monday
Feb212011

BEST HELP EVER

Budding cartoonist, Josh W. enjoyed drawing on the More than a Mountain shipping boxes.

A few lucky mug recipients will be receiving original package design by Josh W. Joshie loves to draw cartoons and enjoyed drawing on the boxes of mugs before they were shipped out. Our yellow lab, Macy also got in the act as did my parents.

More than a Mountain prints and mugs are available at Purloin Studio in Menomonee Falls, WI. Purloin Studio promotes art and artists in the community and has an exciting new gallery space. Visit Purloin Studio's new location on Main Street across from Associated Bank. 

Josh W. and his faithful sidekick Macy take a break from their hard work. 

 

Saturday
Feb192011

YOU GO GIRL?

My mother sent me this link this morning. It's for sure the funnel of choice for me...great package design and marketing! Apparently female urination devices (FUD) have been around since 1918 and patented in 1922. Gogirl rebranded this concept and is creating a buzz with active women everywhere. Check it out. Maybe Gogirl would consider sponsoring us for our climb!