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

 

 

Sunday
May152011

DONE! (Cellcom Green Bay Half Marathon)

It was quite windy for today's run but the sun helped to made it more enjoyable. My Jackson running partner (who is definitely a stronger runner than I) decided we should try to run this one together. And we did almost the whole thing together (including a few potty stops, etc.) We are going to sign up for the Whistle Stop in fall.

At the GB Expo this past Saturday we were excited to learn about Rapid Force, a Milwaukee-based company. Since my achilles injury last summer I learned about the benefits of kinesio tape. But these new Rapid Force products are really cool and are and easier way to deal with the traditional tape. As a graphic designer, I love the design as well. Take a look below.

 

Even though this half marathon was not my strongest but I feel good about is since I have had quite a few set backs with my health during the March training. On to some trail running and hills with the new gear for the MS/PD Kilimanjaro trip in the next several weeks.

 

 

Tuesday
May102011

MAP & LINKS

Here's a map of Tanzania. My Dad asked me where exactly in Tanzania is Mt. Kilimanjaro. So here you go .

 

Plus a couple links for one of my fellow climbers. : )

 

 

 

 

Monday
May092011

Green Bay Half

This coming Sunday, May 25, 2011, is the Cellcom Green Bay Marathon. I am looking forward to it although this year's training schedule was less than perfect. I feel as ready as I can be and am awaiting one more IV to deal with recurring my low ferritin levels and anemia

Sunday
May082011

HAPPY MOTHER'S DAY

I can't pass up this opportunity to post for the world to see the an amazing mother I have. 

No words can really describe how creative and energetic she is (even in her seventies). While she's never been a typical mother, she took care of us....the laundry was always done, supper was on the table, etc. Because she was always doing artsy projects it provided the environment that nurtured our creativity. My brother and I always got involved and Mom was encouraging. We made paintbox cookies (cookie cutter cookies you actually painted with an yolk-based edible paint). we made spice plaques to sell at the local art fair (Rob “Bee” and Sue “Bee” plaques), we decorated the gingerbread cutouts seasonally (it's hard to explain), we were trusted to iron and hot glue. Our neighborhood friends were always included and everyone was like family. We had an antique player piano that was constantly generating music by someone and it never phased my Mom even a tiny bit. She always took the chaotic household in stride. I think she actually craves a busy lifestyle.

We tagged along on adventures at antique shops before “antiquing” was popular. My Mom and her very good friend loved to find new places to go and their collection of kids would pile into the back of the GTO or red station wagon and go. No seatbelts and squished together we had fun. The places we went to were often old farmhouses. Our Moms let us explore...and we did. We would often find ourselves trying to catch the farm cats and wandering through the barns and out buildings. It was always fun.

My Mom has always loved fashion and it's rare to see her without makeup and accessories. She used to mow the lawn in her bikini and wore hot pants to the PTA meetings. She has had every hair style including the “frizz”.  I could never be that glamourous and always look forward to seeing what she's wearing. 

We had every possible childhood experience from music lessons to two litters of dachshund puppies. We had hamsters, mice, cats, rabbits, fish and turtles. 

My mother is extremely talented with sewing. My brother's room is now her sewing studio and it is covered floor to ceiling and is a creative paradise. She has a knack for putting together out of the ordinary fabrics and techniques. Creativity beams from within her.

One of my favorite things about my Mom is that she always finds time from her busy life to watch over her friends that are in the hospital or sick.

When I was young I seemed to always have bronchitis or strep. At seventeen I almost died from a severe case of mono that was misdiagnosed and spent 6 months before college trying to recover. My Mom slept on the floor in my room and advocated for me until I finally got the medical help I needed. I remember how relieved she was when they finally wheeled me into the hospital. So, in 1987 when I was diagnosed with multiple sclerosis I think it was a bigger blow to her than me. As a mother I understand this now and I know she never stops looking for a cure and ways to improve the quality of my life with MS. 

Mom my is the perfect Mom for me and as I get older I think I appreciate her more. I am thankful for all she has taught me and realize how lucky I am. Love you Mom!

Thursday
Apr282011

WHAT PEOPLE SAY TO ME

But you've never climbed a mountain?

That's right. I've never climbed a physical mountain. But everyday I climb the proverbial MS mountain. Every day those of us struggling with chronic illnesses like multiple sclerosis practice this exercise daily. It's a great analogy and helps develop a inner strength and integrity (some of the the only benefits of living with less than fabulous health). 

Are you afraid?

No. It doesn't even occur to me to be afraid or apprehensive. That's how I've always been put together. If I decided to do something I am 100% committed. I am learning everything I can about having a successful climb and on a solid training plan. Maybe I will feel differently when I am actually standing at the foot of Kilimanjaro with monkeys staring at me, but right now I couldn't be more excited about the opportunity.

. . . . . . . . . . . .. . . . . . . . . .

So without being too preachy....go out there and challenge yourself everyday....one mountain a time.

 

Wednesday
Apr272011

WPR INTERVIEW

Here's link to the Wisconsin Public Radio Interview about our MS/PD Kilimanjaro Climb as reported by Mike Simonson.

 Mike interviewed Lori Schneider and I several weeks ago and I understand it just aired April 25th. Lori sounded so professional, and well um, I sounded like I always do!

Tuesday
Apr262011

GRATITUDE

Just catching up from being torn in many directions this past holiday. Friday night egg coloring at my sister-in-law's, Saturday Easter with my husband's family and Sunday is with my side.

Holidays and family time can be good but I don't think we can ever express enough thanks for these events. Or understand how we will treasure them when they change or become extinct. No matter how prepared you are for such events they take a lot of effort and coordination. For instance, I wonder if my parents will ever know what a wonderful tradition they have established for us all. Not only does my Mother put together a gorgeous table and culinary masterpieces that are unforgettable (BTW I need to add that my Mom is has been doing this long before anyone ever heard of Martha Stewart), but she makes sure the grandchildren continue to be amused by the easter egg hunt (even if the ages range from 10 to 21). 

I have come to appreciate the handing down of recipes and the fact that now I get the chance to bring something to add to the feast as well. I am grateful for the years I was able to just show up and partake when my kids were babies and my health was sketchy. Still it all is a lot of work and  I hope my children recognize how special these holiday gatherings are. As my father's health declines my brother and I felt the need this year inquire whether of not our family should continue gathering at my parent's place or if it was time we stepped up to relieve our parents of the responsibility.

None of us really want the tradition to end or change, we just don't want our family holidays to cause undue stress or burden. I am not sure we know the outcome of this inquiry yet. Nothing needs to be determined until Thanksgiving anyway. 

Still I wonder how it feels to be in their shoes. I know when my MS causes me to make choices I don't want to make. These choices can make you feel like you aren't in charge anymore. But I suspect my parents will think it all through and when they truly believe it's time to pass on the baton they will. At least they officially know they have options now. Funny, as I write this it occurs to me that I bet they knew this all along and find it amusing on some level that my brother and I thought we needed to bring it up.

 

 

Friday
Apr222011

ART DAY

My life is always overloaded and chaotic. There are never enough hours in the day to accomplish everything I want to do. But since December I think it's been more stressful than enjoyable. Today is the first day in a while I actually and doing to work on my children's book that I am developing for the ipad. My long-time mentor and friend are getting together today to do some painting and experimental patterns and textures. What a great way to end the week.

As I prepare for the Kili climb I have had some MS set backs physically (like the walking scare a few weeks ago) and I believe a better job of managing the stress in my life is the next thing I have to deal with. When I train it gives me the time to unwind but it's not enough. 

So today is art day for a while and I can't wait.

Wednesday
Apr202011

GETTING STRONGER

Got my visa back and according to the dates it looks like I could hang out in Tanzania for about a year!

It's less than 90 days until the climb and my training schedule is finally getting back on track. The Green Bay half marathon is a month away and I think I will able to do it. Sunday is the 11-miler and then the taper begins.

Training for these events has been difficult due to health set backs (MS and AS complications due to Avonex side effects. At least that's the best explanation I have so far). I am gaining my strength back a little more every day. I am reminded everyday as I train how lucky I am to be as physically active as I am today. There were times in my life that I could only take one trip up the stairs per day. So I am trying to rest when I can and keep pushing so that I can be stronger and reach my goals. (I am laughing to myself as mind is humming the theme song from Rocky! -- HA!)

Saturday
Apr162011

HIBERNATING

When I was first diagnosed with multiple sclerosis (MS) in 1987 I had a hard time figuring out which symptoms were MS and which symptoms were just normal everyday health issues. Then in 1994 I was diagnosed with Ankylosing Spondylitis (AS). I tried real hard to determine which disease was causing which symptom. Truth was it didn't really matter much because very little could be done to relieve the symptoms of either disease. But sleep on the other hand seems to have some magic in it. Sleep rejuvenates me like nothing else. Problem is if I would allow myself to sleep as much as my body craves, I would miss much of my life. 

The past several weeks have been difficult as I have had more pain and muscle stiffness than ever before. I have been trying acupuncture and have found that it can really help with pain management. But nothing would be better than hibernating for a couple weeks.

 

 

Friday
Apr082011

PAPERWORK

I think I have completed the final paperwork for the Kili Trip! It feels good and I am very excited.

Tuesday
Apr052011

MY BROTHER HAS A BIRTHDAY TODAY!

Just so everyone knows, it's my brother's birthday today. He is of course older than I am and I cannot pass up the opportunity to with him well today! So Happy Birthday, Rob (Robbie, Uncle Rob, Steamboat, Tiger, Ape face (you almost killed for that one), I am sure there are more. Feel free to post any I've missed.

Monday
Apr042011

PASSING THE BUCK

Last Friday I had an MRI of the lower spine and hip area. Turns out that my arthritis (Ankylosing Spondylitis) is “notably changed”. At least that's what my neurologist's nurse says. 

So even though skipping the avonex Friday night clearly showed such dramatic improvement my neurologist wants me to start taking a full dose again on April 15. (The experts at avonex recommended only injecting about half of the dose, but my neurologist ignored that suggestion all together). What? I said...you've got to be joking.

Then I asked the nurse to explain the strategy behind this. The answer was he's my neurologist and needs to treat me for the MS, the arthritis will need be treated by somebody else.

WOW! Now that's really passing the buck and I think it's a horrible way handle the situation.

Sunday
Apr032011

LIFE IS GOOD

I am feeling good. I am back on my training schedule and am so happy to have made it through my long run. I did have to walk a little, but felt pretty good through out. Thank you Lord!

Sunday
Apr032011

HOORAY

My neurologist had me stop the Friday night injections of avonex and I actually had the first Friday/Saturday since January that I wasn't miserable. I am still pretty worn out but so much better I can hardly believe it. I think I get used to feeling badly and don't realize how bad it was until I actually have a good day. Other than being massively tired and still a little weak I am definitely on the mend. I hope to get a power nap today and try to get my long run in for my upcoming half marathon (even if I have to walk). : )

I understand that Wisconsin Public Radio is going to air our Kili interview tomorrow sometime, too. Hooray!

Saturday
Apr022011

GATHERING

Kristy and I went to the Oshkosh outlet malls in search of more gear for the climb. It was fun but I ended up buying 2 skirts and pair of metallic, high-heel sandals. Hmmmm...I blame my Mother for that!   : )

Friday
Apr012011

HAPPY BIRTHDAY JANE

Just have to say Happy Birthday, Jane (my BFF since childhood!) Congratulations, I hope you have a great day.

Wednesday
Mar302011

FEELING BETTER

Today was another full day and I am starting to get back some of my energy from the Saturday's episode. Still not sure if it was an MS exacerbation, anemia issue, avonex side effect, Ankylosing Spondylitis flare up, reaction to the vaccines or a litany of other possible causes. But I do fell like I am getting back on track today. Only one more test on Friday and I might have some more answers. I am thankful and know that if I am patient I will be back to my training schedule before long.

The crazy thing about multiple sclerosis is that there are so many flavors of the disease. Plus if you get one autoimmune disease you are likely to get more. So it's a constant struggle to untangle what's what. I remember when I was first diagnosed in the summer of 1987 every little hiccup caused me MS concern. I would constantly wonder if the slightest symptom was an MS symptom. But today there is so much more information out there and I think I have gravitated to the other end of the worry spectrum. I usually blame the MS last for any health issues. It is interesting to note that most physicians could be more educated about MS (this comment is bases on my personal experience). I find that I have a better exam if MS is the last bit of info I share. Just saying.

 

Tuesday
Mar292011

DON'T SWEAT IT

Today the I received the nicest phone call from Mike Simonson, from Wisconsin Public Radio/Superior Bureau.

Just for a brief second I felt maybe a little famous...being interviewed is not something I do every day. Fortunately Mike was patient while I pulled over to park the car and strapped my brain on! 

What a cool opportunity to be asked about our the upcoming MS/PD Kili climb and our team. I can't even remember what I said....it just kept bubbling out. I emailed him right away when I got back to my office to be sure I didn't miss the big picture. I wanted to be sure I officially said all the right stuff about the purpose of the climb…raising awareness for multiple sclerosis…helping people with and without challenges live fully and achieve goals…blah, blah....

He was kind enough to respond right away and reassured me the message will be in there. The best part about his email was this “Don't sweat it. Just sweat getting ready for the climb.” 

Now that was well put and made me smile. Thanks Mike.

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.