Wednesday, July 1, 2015

Hotel Art Tourist

Most people don't notice the artwork on hotel walls.  I do. 
  
I used to enjoy traveling, but now find it to be physically and mentally challenging, which means that just getting to a hotel room is all the excitement I can take.  

I recently went to the Renaissance Chicago Downtown Hotel for the MS Bloggers Forum, sponsored by Novartis (they provided airfare, travel, hotel, and meals).  While there, a number of participants explored Chicago, wandered along the river, visited the Navy Pier and the Millennium Park.  

I, on the other hand, was just too spent from the travel and conference, so chose to limit my explorations to the hotel lobbies. And what a thrill!  The hotel completed a major renovation by the Gettys Group in May that included art capturing the magic of a big city: "...small pieces coalesce to create a picture."  It was the hidden elements that provided moments of giddy delight for me.

Take, for example, the picture of the huge taxi behind the registration area:
It's pretty obvious, right?

But the excitement comes when you get up close and see that...


... the taxi picture was made from pencils!
I spent a lot of time considering a 3-D piece on the second floor lobby.  Take a look and see if you can read the message (I had to ask the hotel staff):


The answer is:
"THE WINDY CITY SWEET HOME CHICAGO"

So even though I couldn't visit the normal tourist spots in Chicago during my brief visit, I was treated to an amazing art exhibit that gave me the flavor of the city, and an exhibit that I suspect many people just don't notice.

PS - I did get Lou Malnati's deep dish pizza. Yum!

Home

Friday, June 26, 2015

Insecurities: Arise!

There is nothing like being with some of the best MS bloggers and writers in the US to stir up my insecurities.  So when I'm insecure, I blog.

In a few hours, I'm heading to the Philly airport to go to Chicago for an all-expenses paid, Novartis-sponsored MS Bloggers Forum where I'll have a chance to schmooze with some of my favorite MS writers and activists. This is the second time I've been invited, and I'm honored to be asked to come back.  I don't know the complete line-up of luminaries, but here are a few that I'm excited to meet or to see again.

While I'm waiting for the car to pick me up, I'm re-reading Matt Cavallo's "7 Steps to Living With a Chronic Illness" and Yvonne deSousa's very funny "MS Madness."  I'm looking forward to seeing my vibrant guru Jon Chandonnet, whose book, "Shadow Summit," I reviewed back in 2013. I can't wait to see Lisa Emrich again, whose blog "Brass and Ivory" and her work with HealthLine.com/health/multiple-sclerosis, MultipleSclerosis.net, and numerous other health groups helps to make sense of medical information. Then there's Dave Bexfield of Active MSers fame, whose humor makes me forgive the fact that he's so darn active in spite of MS.

But while I wait and realize who I'm going to see, I feel like Bill and Ted (Wayne's World) when they are about to meet Alice Cooper, and my brain keeps chanting their famous line: "We're Not Worthy".  

See you in Chicago, blogger buddies!

Home





  

Monday, June 15, 2015

The Origins of "The Flickering Lamp"

Until Sunday, I thought the most frightening thing in the world was to be the person who reads a children's story (for all ages) during our church services. This Sunday, though, I realized that the most frightening thing in the world was to be the person who reads a children's story (for all ages), but without the story.

Obviously, I'm exaggerating about what frightens me (a little). But what made me nervous this Sunday was that I didn't plan to "read" a story to the children; instead, we had a "conversation" in front of the congregation (anyone remember Art Linkletter?).

Our theme was Body and Soul, so I chose to talk about the Body (left the Soul to the minister) and how some people have hidden broken body parts (aka invisible illness). Other people can't see the broken parts so might think that a person who acts differently is faking or just wanting attention.  I brought along a little table lamp to illustrate a device that has a short in its cord (hidden broken body part) which causes the light bulb to act differently. Sometimes the bulb lights up, sometimes it doesn't, and sometimes it flickers.  No, the lamp is not lazy, it's just wired differently.

The children were very attentive, engaged, and so funny.  "What do you think is wrong with the lamp? I asked. "It's bored," was the first response. The rest of the conversation was just as creative, and in the end the children suggested that we need to be nice to people even though they might act differently.

After the service, more than one adult commented that they noticed a similarity between what I've told them about Multiple Sclerosis and the poor flickering lamp. So for my church friends who didn't already know, the inspiration for last Sunday's children's story, which Rev. Andrew Weber named "A Flickering Lamp," is my e-book titled  A Short in the Cord.

A Short in the Cord:
A Retrospective on Living and Coping with MS

You can download or read an MS Word version by clicking on the link.
https://docs.google.com/file/d/0B2Ok3UFt4v1yeENhV2FkcjFzVEk/edit

Back to Home Page
#MultipleSclerosis

Tuesday, June 2, 2015

The Final Final Results from the MS Walks

UPDATED figures are in, and the Wheeler's Wobblers raised $11,270.72 between our two 2015 MS walks in Wilmington and Newark, Delaware. You did a great job again this year, and I want to say "Thank you for walking, donating, and cheering!"

Because this is my last year as team captain, (feel free to volunteer if you want all the fame and glory), I thought I'd recap and give your our final results.  


In the six years that the Wobblers participated in the Delaware MS Walks, we raised almost $55,000. 

We grew from 8 teammates to almost 50. We expanded to participating in two cities. We had walkers from as far away as Pittsburgh (PA), Baltimore (MD), Landenberg (PA), and Middletown (DE).  We had congressmen and doctors (medical and PhD) and people with MS and people who didn't know anything about MS. 

We had fundraisers, a wine tasting, dinners at Ruby Tuesday, and pendant sales. We had corporate sponsors and for a few years had a team t-shirt. 


Of course, what made us famous was our huge team sign that made us the envy of all who gazed upon it (thanks to The Husband).

But most important, we made a lot of connections with the community and had a blast doing it.

Thank you, everyone. And remember, "Wheelers wobble but we don't fall down thanks to YOUR support!"

Back to Home page

Friday, May 15, 2015

We'll Pause Now for This Station Break

2015 has been a whirlwind already.  As I noted in an earlier blog ("I Can Do This"), I over committed to activities and, believe it or not, I am STILL paying for it physically and mentally.  It was all good stuff, but even the little tasks that only take one or two hours a week or happen only once a month will add up to a demanding, energy-draining schedule. 

Just yesterday, I forgot my fundamental rule for personal energy management: "Do no more than one event a day."  I had blood drawn in the morning, then saw my PCP in the afternoon, then had to spend time at the pharmacy. Sounds like no big deal, but it exhausted me and I had to cancel an evening event (but it's only once a month).

Okay, Universe, message received.

Now that the MS Walks are finished (we raised $11,000!) and I have very few hanging commitments, I'm clearing my schedule to spend some time recharging and reflecting. Coincidentally, blogger Cathy Chester (from "An Empowered Spirit") feels the same way and wrote a beautiful post called "Renewal: It's Time For Me to Take a Short Break." She's more eloquent on the subject, so I'm referencing her post here:  http://www.anempoweredspirit.com/renewal-its-time-for-me-to-take-a-short-break/

As Cathy says in her post

"The year 2015 has been filled with many challenges for us and I need a chance to breathe. Like the budding flowers in our garden I, too, want a chance to feel renewed."

Back to home page


Monday, May 11, 2015

Wheeler's Wobblers MS Walk Results

RESULTS FROM THE TWO 2015 WHEELER'S WOBBLERS MS WALKS IN DELAWARE: 

We raised $11,000 (and 72 cents). WOW is all I can say over and over. THANK YOU!

Wilmington (21 walkers): $6,777.72
Newark (34 walkers): $4,223  

WOW!

Saturday, May 9, 2015

Leap and the Net Will Appear

Quote from John Burroughs, American author and naturalist:
"Leap and the net will appear"
Today, this Eastern Bluebird finally got up the courage to leap from the comfort and safety of its nest box, where it had hatched about two weeks ago. But on the way out, it stumbled and caught itself on the edge of the box. After flapping madly, it landed on the top of the baffle under the box.  It finally flew away to the safety of the trees while its sibling watched from inside the box.

It takes courage to try something new, to leave the comfort of the known.  
But sometimes that effort will bring us a better view.  

Home

Friday, May 1, 2015

Diverse Groups - One Goal

Our Newark (Delaware) Wheeler's Wobblers MS Walk team is made up of diverse groups that at first glance seem to have nothing in common.

For example, the 5th and 6th grade "Roots and Shoots" children from the Unitarian Universalist Fellowship of Newark will be walking along with members from the University of Delaware wrestling team;

Dax, a dog from the Canine Companions for Independence we be walking alongside a woman who has run numerous marathons;

Friends from the Newark Main Street Multiple Sclerosis support group and Middletown Lunch Bunch MS support group will be walking (rolling/being pushed) alongside a woman from western Pennsylvania.

What brings them all together?  The common desire to see an end to Multiple Sclerosis.

It's not too late to be a part of this great movement.  You can join us in Newark, Delaware, Buffalo Wild Wings on Sunday, May 3.  You can still donate to the team or to a walker.  Just go to this site to get details:

http://walkded.nationalmssociety.org/site/TR/Walk/DEDWalkEvents?team_id=407514&pg=team&fr_id=25750


Monday, April 27, 2015

I Can Do This!

The last few months have really challenged my energy management. Between MS walk fundraisers, MS walks, speaking engagements, conducting a workshop, yada yada yada, I lost my routine for rest, exercise, meditation, and proper nutrition.  The tank has been empty for a few weeks. When I get this exhausted, I go on auto-pilot where I can push through the fatigue but not remember anything that I did. Then my body gets back at me with a rerun of all the MS symptoms I've ever experienced all at once. And just for fun, it drops a boulder on me just to show me who's really running this show.

I call that a "physical reaction" to stress. I'm not complaining, really. But when I need to push through because I have committed to something, I look for a theme song.

My current theme song is "I Can Do This." It was written by David Osmond, son of Alan Osmond, nephew of Donnie and Marie.  Both David and his father, Alan, have MS.  David is currently working with Novartis (the national sponsor for this years MS Walks and maker of Gilenya) on a program called "Our Voice in Song" to raise awareness of relapsing-remitting Multiple Sclerosis. Check it out at http://www.ourvoiceinsong.com/info/david-osmond-ms-song.jsp   

The words to I Can Do This resonate with me, especially the refrain, and has kept me going:

I can do this - Just stick around, you'll see
Going through this - takes every part of me
What I'm feeling down inside's like a roller-coaster ride
But it's true, yes - I can, I can

I can do this - I want the world to see
I can do this - Look what I have done with me
I'll keep my hands up high on this roller-coaster ride
Cause it's true, yes - I can do this

I can do this. Just take it one moment at a time. I can do this. Until the roller coaster ride comes to a stop, I can hang on.

Home
#MultipleSclerosis


Wednesday, April 22, 2015

Sponsor Spotlight: East Coast Turnaround Rock Band

Continuing to highlight sponsors of the Wheeler's Wobblers Multiple Sclerosis Walk Team, Newark, Delaware

Thank you to Western PA Wobbler teammate Tina Moore for collecting a donation from the rock band East Coast Turnaround for the Newark MS Walk on May 3. Although they call themselves "The Fathers of Trucker Rock," it feels a bit like what we used to call "southern rock." Whatever you want to call it, it's good music. Some of my favorites include "Midnight Special" and  "Where's My Sunshine?"

Check out their YouTube channel videos, then let's see if "Smyrna at Night" can snag them (they got Lovebettie, so why not another Pittsburgh band?). 
Follow them on Facebook: https://www.facebook.com/pages/East-Coast-Turnaround/188897343877

Thank you, East Coast Turnaround, for your support!

(Photo credit: Tina Moore)
  #MultipleSclerosis

Tuesday, April 21, 2015

Sponsor Spotlight: Susan King, Fused Glass Artist

Susan King, a Newark (Delaware) fused glass artist, has generously donated 23 pendant necklaces as a Wheeler's Wobblers Multiple Sclerosis Walk Team fundraiser, which we are selling for $10. Each is a one-of-a kind piece of art, and we've already sold ten.

They will be sold after the April 26 Sunday service at the Unitarian Universalist Fellowship of Newark by the 5th and 6th graders, who will be joining the MS Walk in Newark on May 3rd. If you can't make it that day, send me a note and I'll hold one for you (local customers only, please). 
Susan King's work is absolutely beautiful. Here she is holding a bowl that I purchased.  Susan will be teaching at Art Space on Main in Elkton, MD, on Saturday May 16, 10:30 - 1:00pm.  They will be marbling with liquid glass! More information is at the end of this post.

She has glass dishes for sale at Art Space on Main (Elkton, MD), the Newark Art Alliance, and The Center for Creative Arts in Yorklyn, DE.


More information about her upcoming marbling glass class:

FUSED WARM GLASS CLASS
SATURDAY MAY 16, 2015
10:30 am to 1pm
Art Space on Main, 133 W Main St, Elkton, MD 21921
MARBLING WITH LIQUID GLASS 

Do you like the look of marbled paper?  Try making it with glass.  We will have patterns for you to follow or create your own.  No experience necessary.  All materials & tools provided.  $40 each class.  Children under 8, $20.  Taught by Susan King.  For information & to register, contact Art Space on Main: 410-620-2464; artspaceonmain@yahoo.comReturning students may work on their own projects.   

Back to Home page
#MultipleSclerosis

Tuesday, April 14, 2015

Wilmington Walk Results!

Update to my last post: 

Wheeler's Wobblers MS Walk Team Wilmington raised $6,742.72!   


Great job, everyone! Thank YOU for your hard work and support!  

http://main.nationalmssociety.org/site/TR/Walk/DEDWalkEvents?pg=team&fr_id=25736&team_id=407378


Monday, April 13, 2015

Thank You!

I'm sending out a big THANK YOU to everyone who supported the Wheeler's Wobblers MS Walk Team efforts in Wilmington last Saturday: the walkers, the donors, the sponsors, the walk staff.

It was a sunny day, but very windy.  We had our famous Wheeler's Wobblers team sign up for a short while before we decided it was not safe and packed it up. Then the wind decided to toss our tent across the parking lot, crashing into the registration tent. Fortunately, the walk had already started so there were not a lot of people in the area.

We didn't have our own registration table this year, so it will be a while before I find out how much we raised, but I know it will be over $6,000!  Way to wobble!

But, no resting on our laurels, yet. We are now gearing up for the MS Walk in Newark, DE on Sunday, May 3rd.  

"Wheeler's wobble but we don't fall down, thanks to YOUR support!"


Friday, April 3, 2015

One Week To Go! Can You Sponsor Me?

Greetings to all friends and followers of A Short in the Cord blog and the Wheeler's Wobblers MS Walk Team! You are the great people interested in helping to rid the world of Multiple Sclerosis.

There is one week left before the Wheeler's Wobblers MS Walk team wobbles for the sixth year in Wilmington, Delaware.  We have raised over $45,000 toward MS research and programs.

Shirt from The MS Shoppe

My personal goal is to raise $3,000 this year. So far, I have received $2,120 in personal donations.  To those who have already contributed, I say THANK YOU!  


Can you help me reach my goal by making a tax-deductible donation? Even a small donation will make a big difference.  Just go to the link below to get to my personal page.

There's still time to join the team, too. 


http://main.nationalmssociety.org/site/TR/Walk/DEDWalkEvents?px=4181026&pg=personal&fr_id=25736


"Wheelers wobble but we don't fall down, thanks to YOUR support!"

Home

Friday, March 27, 2015

Want to Help Me Have a Very Happy Birthday?

Yes, it's that dreaded day again. 

No, not the arrival of the day that reminds me that I am one year older. Although I am one year older today, I am grateful that I am lucky enough to have this complaint.

Rather, this is the arrival of the day every year when I ask you to donate to my fundraising efforts for Multiple Sclerosis research and programs.  Yes, this is the equivalent of an NPR fundraising campaign.


Will you consider making a tax-deductible donation to my MS Walk fundraising efforts?  Every donation will make me very, very happy. And very, very grateful!

If so, you can donate on-line at my walk site here:

http://main.nationalmssociety.org/site/TR/Walk/DEDWalkEvents?px=4181026&pg=personal&fr_id=25736

Thank you for your support!
Back to Home page
#MultipleSclerosis

Tuesday, March 24, 2015

Fundraising: One Step at a Time

Believe me, I know first-hand how challenging it is to ask for help or ask for money.  It’s uncomfortable, it’s scary. It fills you with dread. You don’t want to beg.  I can hear the groaning coming from your belly. "Please, please, please don't make me do this," you plead.

The most important thing to remember is that many people actually WANT to help in some way. It makes them feel good about themselves. You are raising money to help find a cure for a disease that debilitates thousands of people in our area. You are raising money to provide programs for people who need help getting around the house or need help getting through one day at a time. You are raising money to help people who find taking one step to be a major hurdle.

So I encourage all the Wheeler's Wobblers team members to 
take just one step this week for those who can’t. 

Just ask one person to sponsor you, even for $5 or $10. Then if it makes both of you feel good, take another step.  For the reader who is not (yet) a Wobbler, I encourage you to join the team or make a tax-deductible donation to our cause (link is provided below). Any donation, no matter how small or large, will help many people.

For this year’s MS Walks in the Delaware area, here are some incentives to encourage you to ask just a few people to sponsor you in your MS walk fundraising efforts:

Raise at least $25 to receive a post-walk meal.

Raise $100 or more and receive a really cool commemorative Walk MS T-shirt.

Prize levels above the $250 level will be available from our online prize redemption company.

Raise $500 or more to join the elite Orange Club with special prizes AND bragging rights.  Last year’s Orange Club members include Donna Hunt, Eleanor Pollak, and Anne Green. Just ask Anne, the bragging rights are worth it.
Anne Green raised over $500 and became a member of the Orange Club

Raise $1,000 or more to join the even more elite VIP Club. I and The Husband are VIPs, and believe me that life feels good in this club knowing that we are making a difference.

Wheeler's Wobblers MS Walk Team Page for Wilmington:
http://main.nationalmssociety.org/site/TR/Walk/DEDWalkEvents?pg=team&fr_id=25736&team_id=407378



Wednesday, March 18, 2015

Thank You Wobbler Supporters!

A big shout-out to everyone who supported the Wheeler's Wobblers' MS Walk Team fundraisers at Ruby Tuesday. Between the Main Street MS Support Group moving its monthly meeting there last week, to the Unitarian Universalist Fellowship of Newark (UUFN) takeover on St. Patrick's Day, and the Adam's Run neighborhood subdued family night tonight, a lot of personal connections were made. 

Because every connection counts, that's why we do this. 
THANK YOU!
UUFN Takeover of Ruby Tuesday
Home





Monday, March 16, 2015

A Different Way to Celebrate St. Patrick's Day

One of the legends of St. Patrick is that he drove all the snakes out of Ireland.  To celebrate St. Patrick's day, then, let's work to drive out Multiple Sclerosis from our lifetime!  

As you know, I'm raising money for the National Multiple Sclerosis Society through my MS Walk Team, Wheeler's Wobblers. The NMSS supports research to stop and repair damage caused by MS as well as providing services to people struggling with MS.  

Will you support the cause in honor of St. Patrick's Day?  To make a tax-deductible contribution, go to my walk page at
http://main.nationalmssociety.org/site/TR/Walk/DEDWalkEvents?px=4181026&pg=personal&fr_id=25736

Here's a modified Irish Blessing for you:

May the road rise to meet you, (BUT not because you've fallen)
May the wind be always at your back,
May the sun shine warm upon your face, (BUT not too hot)
The rains fall soft upon your fields and,
Until we meet again, (BUT not in the emergency room)

May God hold you in the palm of Her hand.

Slainte! (means "Good Health" btw)

Follow the Wheeler's Wobblers on Facebook at: http://www.facebook.com/wheelerswobblers





Friday, March 13, 2015

A Challenge From Wheeler's Wobblers

Hello readers of A Short in the Cord,

If you follow my MS Walk Team, Wheeler's Wobblers, on Facebook, you already know that I've issued a challenge for Saturday, March 14th: 


On Saturday (3-14-15), let's get 3.14 people to join the team for Wilmington (Delaware) MS Walk coming up on April 11.

OR let's get 314 people to make a donation ($3.14, $31.41, $314, $3,141, or any other number of choice). Rounding UP is acceptable.

Let's see if we can get $314 in donations on Saturday. Can you join in the challenge?

Happy Pi Day! Wobble on...


To join or donate, go to:  http://main.nationalmssociety.org/site/TR/Walk/DEDWalkEvents?pg=team&fr_id=25736&team_id=407378

PS - I don't remember where I got this graphic, so if you know the source please help me to give credit.

Back to home page


Friday, February 27, 2015

Get Ready to Wobble!

March is Multiple Sclerosis Awareness Month.  

You know what that means, right? It's time to wake up the Wheeler's Wobblers MS Walk team and get ready to wobble!

From your interactions with me or others with MS, you are already aware of the debilitating effects of this disease, including blindness, debilitating fatigue, muscle weakness, cognitive impairments, numbness, tingling, and muscle spasms.  And those are just the symptoms I have experienced.  There are many more.

There is still no cure, but medications to slow the progress have seen a marked improvement in the last few years.  Currently, I am benefiting from one of the newer medications and am now able to walk without a cane or walker, and am able to stand long enough to carry on a conversation with you.

Not everyone has been so lucky, so I’m continuing to raise money for research and for programs to help others who live with this unpredictable disease. My walk team, the Wheeler’s Wobblers, will again participate in two of the Delaware MS fundraising walks in Wilmington (Saturday April 11, Riverfront) and Newark (Sunday May 3, Buffalo Wild Wings).

Will you join us? If you can’t walk 3 miles (I can't), then join me at the finish lines to cheer.  We ask that you raise a minimum of $25. There are prizes for higher fundraisers, of course.  If you can’t join the team, then consider a tax-deductible donation to show your support.  And if you’ve already joined or donated, I do thank you for your generosity.

Regardless, remember our team motto: “Wheelers wobble but we don’t fall down thanks to your support!”

To join or donate via credit card, go to one of these walk sites:


Thank you!  Joan Wheeler

FOLLOW THE WOBBLERS ON FACEBOOK:  https://www.facebook.com/wheelerswobblers

Monday, December 22, 2014

Need a Laugh?

The holiday madness has started, so I'm giving you the gift of a laugh. Or four.




Wednesday, December 17, 2014

And So I Choose... Sad

This is a reprint of a post from last December.  Please read all the way to the end before posting a comment telling me not to be sad; the punch line explains the title.  Happy and healthy holidays to everyone!
------------

Oh, Christmastime. So full of merriment.  Parties with lots of people, houses dripping with decorations, wrapped presents under trees and in stockings.  Gatherings, caroling, late nights.  What’s not to love?

Well, let me tell you…

Christmas involves activities that I find exhausting, like shopping for presents. When I simply go grocery shopping, I have to put my list in order by aisle to conserve my energy.  God forbid if the store moves any products around or if labels change (“same product, different look”), then I'll be so worn out that I can do nothing else the rest of the day.  So you won’t find me wandering around a shopping mall unless I’m already at the mall and forgot why I’m there. I get confused and cranky and invent creative cuss words. Then my head pops off.

Then there’s decorating the house.  Decorating usually involves some degree of rearranging furniture which then requires cleaning or at least dusting.  Oh, and what goes up, must come down in January.  Where’s the fun in that? Decorating just turns me into a mercurial super-villain, the likes of which would intimidate Godzilla. 

Now let’s talk parties.  I love my friends, but not all at once. All the noise and stimulation, no matter how much fun, produces an unpleasant physical reaction that sort of feels like porcupines running up and down my body, and bones turning to rubber.  Then I turn into the Hulk.
 
So at this time of year, I have some choices.  I can go to the parties and be around lots of people and then feel like I’ve been blindsided by a sumo wrestler.  I can decorate the house and then implode.  I can shop for presents and then have my body turn to rubber.  I can do these things and turn into a monster from fighting exhaustion and collapse in tears of self-pity.  Or I can limit my holiday activities and feel left out of all the fun, which makes me a little sad.

So I have to choose between turning into a fatigue-induced monster or being a little sad from missing out. 

So I choose sad.  It’s safer.  You’re welcome. 



Wednesday, November 5, 2014

Gilenya: My Third Year Anniversary

Wow, I can't believe that it's been three years since I decided to change my direction and switch my disease modifying drug to Gilenya.

I revisited my old blog posts about the long road leading to the "First Dose Observation." I had forgotten about all the tests required before getting the drug, wrangling with insurance, finding a location to be monitored for the first six hours after swallowing one tiny orange and white pill. I had forgotten how really worried I was the night before.

Now that three years have passed, I'm pleased to report that I'm doing very well. I continue to be monitored for liver enzymes (they spiked initially, but returned to normal levels within six months), for vision abnormalities (all clear), and heart condition (good).  My MRIs have shown no active lesions since I began Gilenya, which is a relief because my pre-drug MRI was all lit up like a holiday tree.

The benefits I saw within the first year include the ability to stand for longer periods of time, which makes it much easier to talk to people face-to-face, or to run errands. I'm now able to walk without a cane or rollater, except for really, really long walks. I've gained some confidence to go out into the world.  During that first year, many people had actually commented that it looked like I was getting around so much better.

Now for a disclaimer: at the same time as starting Gilenya, I began physical therapy with a woman who received training in working with MS patients. She was aware of fatigue issues, and was able to create a good exercise program for me, which may have contributed to my improved mobility.  However, I did not have this degree of success with previous PT experiences, so it's suspected that the Gilenya relieved inflammation enough to allow the PT to be effective. You decide.

Unfortunately, it hasn't cured my fatigue or cognitive brain fog completely, but being able to walk more easily means I don't get as exhausted from a simple grocery trip.

I am aware that Gilenya is NOT for everybody.  I've heard from others who have not been so successful, having some unexpected side effects, so I'm not taking this for granted.  I'm thankful that this drug is working for me.  I just thought I'd share my story with anyone who is contemplating this drug and has been reading lots of horror stories.  Here's one success story.

Home

Friday, October 31, 2014

A Scary Scooter Story


This is a scary story about fear and dread.  No, it's not another Halloween story.  It's an adventure story.  A silly story, really.

Last weekend, The Husband treated me to a weekend at Rehoboth Beach for the Sea Witch festival.
Sea Witch Balloon
"Oh dear, is the witch that scary?" Nah, the Sea Witch is actually the name of a really fast clipper ship that navigated Delaware waters, and a clever woman developed a way to bring people to the shore after Labor Day by blending this nautical theme and Halloween into a huge festival.   But there is a really scary Sea Witch balloon in the costume parade.

What was scary about this story is that I chose to take my scooter.  You see, we used to walk a lot.  For years, we did weekly Volksmarches, organized fun walks of 5-10k.  We went all over the US for conventions, we walked state capitals, saw amazing out-of-the way places, met interesting people.  We racked up miles and events, and even popped up to Toronto for a weekend to do two walks.  As I got weaker, however, we switched from 10k to 5k walks.  Then I developed foot drop/foot flop, increasing fatigue, and loss of coordination.  We went on our last Volksmarch two years before I went on disability.

The loss of my ability to Volksmarch was hardest on The Husband.  It was so fun and meaningful to him. So, knowing that some Volksmarches are wheelchair friendly, I suggested that we do the Sea Witch Volksmarch, but I would use my scooter.

Here's where the scary part comes in.  I've never used my scooter on a Volksmarch before.  I know
from friends that "accessible" can be a misleading term, so I was concerned about the route.  What if it took us on the beach, what if winds had created little dunes in the parking lot?
All that chatter that the brain generates to derail me was in high gear.

The last time I used my scooter for a fundraiser on a flat track, it was horrible.  The cement path had deep ruts between the slabs that led to bone crushing bumps.  I was so sore afterwards, and yet it was "accessible."

Also, I used my scooter once, and fell over.  But I ignored the manufacturers guidelines (no passengers) and had a step-grandchild with me (who just couldn't walk any more).  He decided to pull on the steering bar sending us into a sharp acceleration and a tight turn on a slight hill and we flipped over.  So the specter of falling over remained with me.  Plus I had never stress-tested its battery.  What will happen if it runs out of juice earlier than anticipated?  Will the battery hold its charge even if it's cold?

All sorts of other doomsday scenarios kept running through my mind, just because this was something new.  "Just something new" is the same as "The Unknown."  What's more scary than the unknown?

Of course, the outcome of this story is predictable to you, I'm sure.  Everything worked well.  There were a few problems - no ramp from the starting area to the boardwalk meant we had to figure out an alternative route, which was not marked.  People with strollers insist they have the right of way and are free to come to a dead stop with no warning.  Large puddles blocked some curb cuts; I had to ride out on the street when sidewalks were not too friendly. Crossing streets was frightening, but once I got The Husband to understand that I was scared, he was helpful in getting me across.  I successfully completed a 5k Volksmarch!

I'm pleased that assistive technology enabled me to participate in an activity that I had to give up long ago.  Now, it's not so scary.  And I have a much greater appreciation and respect for people who use wheelchairs and scooters in the real world.  This experience will help me be a better disability advocate, I think.

Home




Thursday, October 16, 2014

Beyond Bone Tired

After my last post, The Biscuit Week, about getting hit with bad fatigue, I discovered an article posted to the On Being website that I want to discuss.

Because I've been dealing with bone-crushing fatigue for years, I have studied how to get help when needed.  I've even lectured on the subject.  Step one: determine what you need. Step Two:  ASK.  This is drastically oversimplified, but you get the idea. Asking for help is hard, often because I don't know what I need. If I do, I usually can't explain.
When I'm that tired, I forget everything I've learned.

So I was very interested in this article by Courtney E. Martin called "Bone Tired and Ready to Be Bossed Around."  

Courtney notes that when people experience bone-crushing fatigue (like any new parent, perhaps), it's hard to ask for help:
Because there is a place beyond tired — bone tired — where you don’t even have the wherewithal to ask for what you need. When you’re in this state of mind, kind humans offer up their time and talent to you, but somehow you can’t receive it. You’re in a fog of exhaustion where you can only see an arms length ahead: reply to this email, return this call, drink this coffee, do this dish, survive, barely. 
Courtney goes on to say that asking for help "... requires energy that the truly down-and-out — whether grieving or overwhelmed or depressed — just don’t have." 

The author suggests that sometimes she just needs someone to step in and do something for her rather than ask her what she needs.  She's ready to be bossed around. 

Yeah, I do get that way.  Sometimes I just need someone else to make a decision about what time to leave, where to sit, what to eat for dinner.  BUT, I really, really don't like to give up control.  Like when I decided to start eating healthier meals, but was tired so asked the roommate to plan dinner for us one night. We had Burger King Whoppers with fries. At least Burger King has the best fries.  But that's not the point...  

I have to ask myself,
"Would I really be open to receive that help unconditionally?"  

Even if that help involves night after night of fried meat on a white bun? 

At the end of her article (which I recommend you read for yourself), the author wants to work toward being more pro-active in helping where she sees a need. She wants to step it up and be the person who makes the decisions for someone in this confused state.  I'm not sure how I would react to be "bossed around" even if it is in my best interest.  

What do you think? Are you willing to receive help unconditionally?  

Home
#multiplesclerosis

Tuesday, October 14, 2014

The Biscuit Week

Wow, the MS fatigue is really bad right now, and I’m blaming last week.

What would seem like a busy week for anybody was a significantly challenging week for me. On Monday, I had a medical appointment. On Tuesday, I spent a few hours with an architect reviewing plans for a sunroom. On Wednesday, another medical appointment. On Thursday, a discussion group in the evening. On Friday morning, a two-hour home repair for women class. On Saturday, a two-hour study hall.

For most people, this may seem like just a full week. But for me, this was a week from hell. 

Each of these events individually should not require a lot of time or energy. But for me, each of these events required a significant amount of energy, and my schedule did not allow for recharging time in between the events.  Yes, I need at least a full day to recharge from most events.

I broke my own rules for energy management. And now I'm paying.  So, what about the biscuits?

On Saturday, I discovered that there was no food in the refrigerator. No edible food that is. I had absolutely no energy to go out; I had no energy to figure out whom to call for help. The Husband was visiting family and would not be home that day.

As I sat in a chair feeling sorry for myself, I was reminded of a time when I had just moved into an apartment in Germany, had no money because my per diem had not yet arrived, and was without food. The previous tenants left behind a box of Bisquick. I discovered that I could make biscuits with Bisquick and water. I lived off of biscuits for two weeks. 


So I summoned up a little energy to make a batch of drop biscuits for lunch and dinner.  Although not a healthy diet, those biscuits got me through the day. With all the discussion about a healthy diet for people with multiple sclerosis, there are times when I’m just trying to get food in my stomach.

Now I have groceries to get me through the week; but, this "biscuit week" made me realize that menu planning needs to be a higher priority. And I have to do a better job of selecting activities to honor my energy limitations.  

In the meantime, thank you, Bisquick.


#multiple sclerosis fatigue

Sunday, September 28, 2014

MS is a Global Disease

After a sojourn to other topics on my social media outlets (complaining about the NFL's wimpy response to domestic violence, getting inspiration from Scotland's vote on independence, and being disappointed that the Asian Games in South Korea would not allow Muslim women to play basketball wearing their headscarves), I feel that I will go back to writing about Multiple Sclerosis for a little while.

It's not that those other topics are not important; to the contrary, they are very important.
Too important.  Globally important.  I like being an informed citizen of the globe, I feel that's important.  It makes me feel less lonely, but at the same time, it makes me feel even more helpless.  I can't fix things in my own backyard, so how can I fix things in South Korea?  

Well, maybe I don't have to.  Maybe I can just listen, and I can bear witness to inequalities. I can share the stories.  

MS is a global disease, and the 2.3 million people in the world (2013) with MS probably have similar stories to mine, similar problems, similar accomplishments, similar fears. But we don't share the same access to resources, doctors, medications.  

The MS International Foundation's 2013 Atlas of MS found that there are inequalities of access to disease modifying therapies between high-income and low-income countries.  One in five countries has no MS support organization.  There are more interesting facts in the Atlas of MS Database, and I suggest you check it out at http://www.atlasofms.org/.    

Globally, people with MS share the same disease, but we experience it differently. We don't all share the same resources or support, but probably share the same fears.  Regardless, we all share one global story.  

Let's not be afraid to be a global citizen. Just start by listening.

Home

Saturday, September 20, 2014

I'd Rather Be a Bimbo

Before the recent NFL domestic abuse problems were uncovered, I had already decided to limit watching NFL games.  I still enjoy the game, but I just got sick of all the commercials.  The play stops for booth reviews and measurements and lots more commercials.  Then there's the bone-crunching sounds from players smashing into each other.  And then more commercials.  Then pans of mostly naked women shaking pom-poms on the sidelines.  Crunch, commercials, repeat.  Superbowl? Who cares about the game, we want to watch the commercials!

Now with the NFL's lame plan to develop decent behavior rules by the END of this season, I'm certain that it's time to switch loyalties to soccer.  It should not take months to implement rules to stop beating women.  I can write up a process in a minute.  "Don't beat up anyone (including women) or you're fired." 

The NFL need look no further than Major League Soccer, which has instituted an outreach program called MLS WORKS, and a public service message called "Don't Cross the Line."  They challenge everyone to take this pledge:

"I pledge to treat others with dignity and respect and will not tolerate discrimination, bias, prejudice or harassment of any kind."

Even more appealing to me is that in soccer there are 45+ minutes of uninterrupted constant action, then halftime commercials, then 45+ minutes of action in the second half. 

Oh yes, here's an explanation of this post's title:  
The Philadelphia Union Major League Soccer Team has a corporate sponsor, "Bimbo," an international Mexican-owned baking company. You might be more familiar with some of their brands:  Sara Lee, POM, Entenmann's, or Arnold. It makes an awkward t-shirt in this country, unfortunately, and I'm sure they are not a perfect company. But I'd rather be a Bimbo and support Major League Soccer, than sit through another season of NFL commercial fests and listen to another NFL player beating up someone and getting slapped on the wrist.

Home