Saturday, January 31, 2009

Happening in Arizona

Upcoming Events You Don't Want to Miss

MS: WALK ON THE WILD SIDE Tucson - February 14, 2009 Tucson Zoo at Reid Park8:00 a.m. -10:00 a.m.
JOIN THE MOVEMENT We look forward to seeing you in Tucson! There is no registration fee but keep in mind that it costs the NMSS $25.00 per walker for YOUR experience that is priceless.The average walker fundraises $235! Every dollar raised will move us closer to a world free of multiple sclerosis. Register Today!http://www.walkaza.nationalMSsociety.orgor call 1-800-344-4867
Britto Tours America Monday, February 169:30 a.m. - 11:00 a.m. Christown Spectrum Mall
A special event for children and their families. Romero Britto, one of the youngest and most successful pop artists of this generation, is coming to Phoenix! Britto Tours America is an exciting celebration featuring his joyful works of art. Kids and parents will have an opportunity to paint wtih Britto!For more information: brittotoursamerica.comTo RSVP: 1-602-249-0670Space is limited, sign up today!
Hurry 4 Curry February 20 and 21, 200911:00 a.m. - 2:00 p.m. and 5:00 p.m. - 8:00 p.m.
Hurry 4 Curry is a redefined, contemporary indian restaraunt and is having its grand opening! All proceeds and donations will benefit the National Multiple Sclerosis Society Arizona Chapter!Hurry 4 CurryArizona Center355 North 3rd St.Phoenix 602-252-8900
Round-Up Ride 2009 presented by Discount Tire March 28-29, 2009 REGISTRATION IS OPEN AND TRAINING RIDES FOR BEGINNERS AND SEASONED RIDERS HAVE BEGUN.Register now:http://bikeaza.nationalmssociety.orgJoin Us on February 28th from 8:30 a.m. - 11:30 a.m. for a Training Ride with breakfast to follow hosted by Discount Tire Company to celebrate our 2009 bike MS Round Up Ride.Location:Discount Tire Corporate Parking Lot20225 N. Scottsdale Rd.Scottsdale, AZ 85255 Women and beginners:Read about beginner rides, beginner issues, the love of cycling and Girls Gone Riding at Sheryl Keeme’s blog at
Join the Phoenix Coyotes for Multiple Sclerosis Awareness Night!
Come join the Phoenix Coyotes, the National Multiple Sclerosis Society - Arizona Chapter and those living with MS in raising awareness at the season finale versus division rival Anaheim Ducks. Part of the proceeds from each ticket you purchase will go toward fighting MS and raising awareness.Saturday, April 11, 20095:00 ArenaFor Tickets Contact:Sean Sanford at (623) 772-3468 or
Join us for our 4th Annual Women Against MS (WAMS) Luncheon Wednesday, April 29, 200911:00 a.m. - 1:00 p.m.
Intercontinental Montelucia Resort and Spa Paradise Valley4949 E Lincoln DrParadise Valley, AZ 85253(602) 956-9400
Martha Madison, former star of NBC's Days of our Lives will speak about her mother who has MS and what it's like being an MS Caregiver.To register visit our website:

Friday, January 30, 2009


She feels the sunshine on her face. The warmth had called her from sleep. She pretends to still sleep, savoring the moment before the questions begin their march. Eyes held tightly closed, she imagines what it would be to live with this darkness forever… to feel the sunshine but never be bathed in its light… to never see the dancing of fireflies or the pink of cotton candy or the green of jade. This has been the fear the diagnosis brought… of all the possibilities the words multiple sclerosis thrust upon her… this loss of color was the one that consumed her days… that sent her manically collecting rainbows and absorbing sunsets, harvesting for the days of darkness.

She opens her eyes… and smiles into the sunshine of another day.

(Since being diagnosed, my biggest nagging fear is that MS will take my vision... for me, everything else, all the other looming possibilities, are workable... the thought of not seeing still steals my sleep...)

Tuesday, January 27, 2009

Body Temperature

Today is a bad temperature day... one minute I'm burning up... the next I'm freezing. It seems that one of my 'MS Things' is poor temperature regulation. While a healthy person's body temperature adjusts itself almost instantaneously to changes in the environment around them, mine seems to take a while... sometimes an hour or more to adapt. Something as minor as another person's hand on mine can pop my body temperature up a degree or two... and while that doesn't sound like much... believe me, it makes a difference.

Cold doesn't seem to be as big an issue... but it does take me longer to get warm after being cold than others around me.

Add to that the nudging of symptoms caused by the increase in temperature and it's not a fun thing... has me constantly adjusting the temperature... and not wanting to be touched... and freezing out my family... lying awake at night because I'm much too warm... and just being uncomfortable.

There are times that it seems almost unbelieveable that this could be happening... I know my family certainly finds it weird at times... and it's not their body!!

More about MS and body temperature can be found HERE and HERE and HERE.

Monday, January 26, 2009

The Choice

Today, I want to be able to work outside in the sunshine that fills my backyard... trimming shrubs... pulling errant weeks... moving things around on the patio.

But I know that if I spend more than 15 minutes or so out there in the 80* weather, there will be a price to pay later.... first, the feeling of nausea that comes with absolutely overwhelming fatigue... then my left eye will go a little nuts and my range of vision will shrink... it'll be hard to read a book or type a blog or play a video game... and my energy will run out long before the day does.

Always a choice... usually made internally... seldom given voice... and even less seldom revealed to those closest to me... generally my decision is based on whether or not the consequences are something that I can keep hidden from my family... so as not to worry them.

If I spend some time doing what I want to do in the backyard, will I still be able to bluff my way through the rest of the day with my family? Will I be able to convince them that I'm perfectly okay... even if I'm not?

That's the real choice... the real question.

Merck Continues Progress Toward Oral Therapy Option

German drugmaker Merck Serono is one step closer to releasing the first pill to treat multiple sclerosis, the company said Friday.

In a press statement, Merck said that patients taking cladribine tablets had a nearly 60 percent lower relapse rate than those on placebo pills. The two-year study included 1,326 MS patients who were randomly divided into three groups. Two groups received different doses of cladribine and one group received fake pills.

Patients on cladribine had up to a 60 percent reduced chance of having a relapse compared to patients on placebo. The study was paid for by Merck.

"This is promising news," said Dr. Lee Dunster, head of research for the Multiple Sclerosis Society in the United Kingdom. Dunster was not linked to the Merck study. He said cladribine appeared to be twice as effective as current primary treatments for MS.

The full story HERE

Sunday, January 25, 2009

In the Phoenix Area

Gaining Momentum 2009 Annual Meeting and Expo

Important Event Details

January 24th, 200910:00 a.m. - 1:00 p.m.
Hyatt Regency PhoenixMain Ballroom
122 North Second Street
Phoenix, Arizona 85004

Parking:Parking is available in the Regency Parking garage on the corner of Adams St. and 2nd St.Parking will be free for the first two hours with a validation sticker, which will be provided by the MS SocietyParking will be $3 for each additional hour.Valet Parking will be available for $12 for the first hour and $1 for each additional hour

Literature and information will be available from event sponsors, chapter events, programs, advocacy and self-help groups starting at 10:00 a.m. with our exciting program to follow.Breakfast will be served.We look forward to celebrating the movement with you!

MS stops people from moving. We exist to make sure it doesn't.National MS Society, AZ Chapter5025 E. Washington St., Ste. 102Phoenix, AZ 850341-800-344-4867

A Voice

Today is one of those days. A late night last night (unavoidable) is, of course, kicking my butt today. But those around me will never know if I can help it...

My left eye is exhausted... it doesn't want to see everything I want it to. My shoulder is aching... after several pain-free weeks... spasticity is something I never ever thought of until MS... now it's a daily thing... often minor enough to be ignored... but just as often not.

It makes me angry... this illness that so quietly has taken so much of my inner life... my hidden life... captive.

The choices are to
A) Whine and complain... which I obviously am doing here... but genuinely despise in myself and others.
B) Put on a happy face and deal with it... protecting the family around me from the sordid details of what's going on beneath the surface.

I have no tolerance for whining... my own or that of others... and so I sincerely try to avoid it whenever possible. As a result, others assume that I'd doing great... my own fault.

I want a world where people factor in this illness... and acknowledge its presence... without surrendering to its demands. I want to be considered without becoming 'poor me'... I don't want pity... really, I don't... no sympathy, please... but I do want empathy.

My goal in writing this is to perhaps be the voice for others who feel the same way and like me, hesitate to say it out loud.... perhaps in writing the words, we are all given validity and value.

Saturday, January 24, 2009


A friend of mine talked to me about one of her family members who has MS... she said that she never talked much about her illness and that others tended to act as if it wasn't there...
This was part of my response to her....

MS is... or can be... such an invisible culprit. For some of us, there aren't a lot of outward signs... to the casual observer, it seems that indeed, nothing IS wrong... so it's easy for people to pretend that nothing is there.

My children... who obviously knew me 'before MS' are so keyed into me that they often notice that something is 'off' even before it completely registers with me... and that is such a blessing. They'll step in and say, "Mom, you're getting tired... or too warm... or shaky... or whatever" and pick up on what I'm doing.

Fatigue is invisible... as are most muscle spasms. To look at me, you would never know that on the right side of my body, I've lost about 30% of my original strength... or that one of my eyes doesn't always judge perception correctly... or that my coordination tanks if I overheat... or a dozen other things.

I don't say any of this in a spirit of "Poor Me"... because honestly, I don't feel that way at all. By the time I was handed a definitive MS diagnosis, it was a relief... most of the other things the doctors had been testing for involved my imminent death. And at the time, I was in a disaster of a marriage (yep, part of the long, messy story) and MS was a cake-walk next to the day-to-day of that.

No... the reason I say these things is perhaps to shine some light on your loved one. Because of her positive attitude, she most likely never points out the 'ouchies' to anyone... and unless she has extremely perceptive people in her life, chances are no one ever notices. The fact that you have the balls to say it out loud and acknowledge her reality is a precious gift that you give her. In a world where most people choose to still expect her to move mountains and smile continually, you give her a place where it's safe to say... "Not such a great day today"

Friday, January 23, 2009


Today is a good day. I can walk. I can run. My vision is in focus. Nothing hurts... a very rare occasion. I'm thankful for now... because tomorrow... or next week... or even this afternoon... things could be different.

I was diagnosed with multiple sclerosis in 2003. My diagnosis was deemed 'definitive' in October of that year... which means that my diagnosis fit into the standards established by the United States government to define disability. Amazing that even in something as clearly medical in nature as the diagnosis of a chronic illness, the government still has hoops to be jumped through. Of course, the insurance companies also played a part... without the definitive diagnosis, my drug therapies would not be covered.

For several months... actually a couple of years... I had shown up in my doctor's office with a series of seemingly random and unrelated symptoms. Shoulder pain... vision disturbances... extreme fatigue... numbness in an arm... and others... just little things that independently didn't seem all that important. Various diagnoses were made... and treatments prescribed and adjusted... and abandoned. Until, finally I showed up there one afternoon with a severe headache that just would NOT respond to any medication. My doctor, a general practitioner who in my mind should be knighted... or nominated for sainthood... or something like that... asked me if I would be okay with going for an MRI... and of course, I said yes. He was focused on the headache... and it's migraine properties... and sent me for a vascular MRI.

So... there I am... inside the tunnel... listening to some of my favorite music... when the voice of the technician says "We'd like to get a clearer picture... would you mind if we did some neurological pictures while you're here?" And again... of course, I said yes. Out of the tunnel for an injection of dye to enhance the images... and back into the tunnel.

Then a day or so later, back to my doctor... who tells me gently that the images show lesions very similar to those created by multiple sclerosis... and then tells me that the neurologist that he would really like me to see is out of the country doing lectures in Europe... and asks if I will be okay waiting for a couple of weeks or if the waiting would make me insane. And... since sanity is not one of my strong suits to begin with... I said I would wait. Which I'm thankful for... the neurologist turned out to be another angel placed in my life.

He scheduled evoke potential testing... and a spinal tap... or in the more pc phrasing... a lumbar puncture... among other things.... more on that another day.

Thankfully... even before the diagnosis was confirmed, he suggested that I immediately begin a therapy... Copaxone daily injections... and I immediately agreed. I've now been doing the injections for five years. And more on that another day.

Today was just a brief... as brief as I could make it... overview of my diagnosis. I hope to expand on each step of that process as well as share information here about living with MS... supporting and encouraging a loved one with MS... available resources... and just doing life with a chronic illness... an adventure it is!!