This week an unexpected nudge from an even more unexpected source reminded me that I’ve neglected this place for far too long. Honesty requires that I confess that my absence here is probably a form of denial … an opportunity to make MS invisible in some imaginary way. And another part of the avoidance is that, in many ways, I feel not only incredibly blessed … but also intensely guilty that my MS experience is so easy compared to what so many others face.
A couple of down weeks around Thanksgiving have lingered through the holidays. One Sunday afternoon, I went from perfectly wonderful to incredibly dizzy and nauseous in a matter of moments. And as usual, first there’s the little voice trying to convince me that it’s just a bug or food-poisoning or some other benign thing that everyone gets and passes quickly. A couple of days trapped in bed cured me of that delusion.
How do I explain that feeling? It felt like being extremely car sick … or extremely drunk … except it was there even when I wasn’t moving … and I hadn’t had anything except tea to drink. And it didn’t go away … ever. MS patients become expert at discriminating between ‘normal’ stuff and ‘MS’ stuff. Then there’s the whole process of determining whether it’s something to just wait out or if we should visit the doctor, jump on the steroid bandwagon and take whatever other medicines he prescribes for the symptoms. I opted for a phone call … which got me the advice to take Dramamine, but for no more than 10 days in a row … and a prescription for Prednisone. The Prednisone is an adventure all of its own … starts with a high dose then tapers off over 10 days … a much kinder option than Solu-Medrol. The first two days are awesome … I’m in a good mood, happy, energetic. Then the sleeplessness sets in and I go a few days without sleep … literally. And then I am grumpy and irritable for a few more days. And then, blissfully back to ‘normal’ again.
That’s the external process. The internal is more complex. Inside the voices begin whispering. They wonder if this is the flare-up that doesn’t get better … if this is the time that a symptom becomes a permanent part of my life. You see, I have been so blessed to this point … my symptoms all ‘sleep’ most of the time … most of the time my life is not very different than it would be without MS. I have no real reason to believe that will change for me. My diagnosis was early. The therapies work well for me. But the voices still whisper. And I know that the voices whisper in the minds of my children. I can see it in their faces and hear it in their questions. And because I’m the mom … because no matter how adult they get, I will always be the mom … I tease them and tell them how silly they are and that I’m perfectly fine.
And I am.
Sunday, December 27, 2009
Tuesday, May 26, 2009
First MS Day
World MS Day GOAL:
50,000 letters to Congress
by midnight on
Wednesday, May 27th!
Demand quality, affordable health care for Americans living with MS.
Click here to send a letter to your elected officials:
Rep. Harry Mitchell
Sen. Jon Kyl
Sen. John McCain
May 27 marks the first-ever World MS Day and over 100 nations around the globe are joining together to build awareness for multiple sclerosis. One of the greatest overarching needs around the world is for quality, affordable health care to ensure all people with MS can lead a life of possibility, dignity and fulfillment.
Here in the United States, for the first time in nearly 17 years Washington leaders appear serious about fixing our broken health care system. Tell Congress that now is the time to fix health care. Help us reach our goal: 50,000 letters to Congress by midnight on May 27th!
We have an incredible opportunity to make our voices heard in support of accessible, affordable health care coverage for all. Our legislators need to know that it is time for the right reforms right now.
As I write this, National MS Society staff and volunteers are meeting with members of Congress about the Society's health care reforms principles. These principles need to be incorporated into new health care policies if people with MS are going to be able to move forward with their lives.
In honor of World MS Day, let us unite to support these efforts with a national wave of grassroots action. Will you help? Write your legislators and speak out for quality, affordable health care by midnight on World MS Day, May 27th.
Decisions your elected leaders are about to make will impact how we receive our health care for generations to come. We can't miss this opportunity!
Below is the set of health care reform principles developed by Society volunteers and activists. With your help, we can put these principles in front of our policymakers. They include:
Accessible health care coverage
Affordable health care services and coverage
Standards for coverage of specific treatments
Elimination of disparities in care
Comprehensive, quality health care available to all
Increased value of health care
Access to high-quality, long-term supports and services
Take action now - tell your legislators to create health care policies that work for people living with MS and their families.
If we can deliver 50,000 letters to Congress by midnight on World MS Day, we will send the message that we are united on behalf of all people affected by MS.
Thank you for standing with me at this important moment,
Scott Hanson
MS Activist, diagnosed in 1998
50,000 letters to Congress
by midnight on
Wednesday, May 27th!
Demand quality, affordable health care for Americans living with MS.
Click here to send a letter to your elected officials:
Rep. Harry Mitchell
Sen. Jon Kyl
Sen. John McCain
May 27 marks the first-ever World MS Day and over 100 nations around the globe are joining together to build awareness for multiple sclerosis. One of the greatest overarching needs around the world is for quality, affordable health care to ensure all people with MS can lead a life of possibility, dignity and fulfillment.
Here in the United States, for the first time in nearly 17 years Washington leaders appear serious about fixing our broken health care system. Tell Congress that now is the time to fix health care. Help us reach our goal: 50,000 letters to Congress by midnight on May 27th!
We have an incredible opportunity to make our voices heard in support of accessible, affordable health care coverage for all. Our legislators need to know that it is time for the right reforms right now.
As I write this, National MS Society staff and volunteers are meeting with members of Congress about the Society's health care reforms principles. These principles need to be incorporated into new health care policies if people with MS are going to be able to move forward with their lives.
In honor of World MS Day, let us unite to support these efforts with a national wave of grassroots action. Will you help? Write your legislators and speak out for quality, affordable health care by midnight on World MS Day, May 27th.
Decisions your elected leaders are about to make will impact how we receive our health care for generations to come. We can't miss this opportunity!
Below is the set of health care reform principles developed by Society volunteers and activists. With your help, we can put these principles in front of our policymakers. They include:
Accessible health care coverage
Affordable health care services and coverage
Standards for coverage of specific treatments
Elimination of disparities in care
Comprehensive, quality health care available to all
Increased value of health care
Access to high-quality, long-term supports and services
Take action now - tell your legislators to create health care policies that work for people living with MS and their families.
If we can deliver 50,000 letters to Congress by midnight on World MS Day, we will send the message that we are united on behalf of all people affected by MS.
Thank you for standing with me at this important moment,
Scott Hanson
MS Activist, diagnosed in 1998
Saturday, May 23, 2009
Vanity
Vanity is an often amusing thing. I'm 47 years old. You'd think I'd be past that.
I give myself a daily injection (my therapy is Copaxone). Do you think it bothers me to do the injection each night? Nope, not at all. Do you think that the needle bothers me? Nope, not at all. Do you think I have trouble remembering the routine? Nope, not at all.
I'm very blessed in that I have absolutely no reactions or side effects to the actual drug.
No ... do you know what I fume about?!? I fume because no matter how often I go to the gym ... no matter how flat my stomach actually is ... no matter what efforts I go to ... my stomach will always be less than perfect because of the injections.
Pitiful, huh?
I give myself a daily injection (my therapy is Copaxone). Do you think it bothers me to do the injection each night? Nope, not at all. Do you think that the needle bothers me? Nope, not at all. Do you think I have trouble remembering the routine? Nope, not at all.
I'm very blessed in that I have absolutely no reactions or side effects to the actual drug.
No ... do you know what I fume about?!? I fume because no matter how often I go to the gym ... no matter how flat my stomach actually is ... no matter what efforts I go to ... my stomach will always be less than perfect because of the injections.
Pitiful, huh?
Friday, May 22, 2009
Good
Today I ran and jumped and played with the dogs at the park.
Today I spent time with friends who allow me to be absolutely real with no worries about interpretation.
Today I had carrot cake.
Today I slept in an hour later than usual.
Today is barely half over and I have many moments left to spend.
Today is good and I am thankful.
Today I spent time with friends who allow me to be absolutely real with no worries about interpretation.
Today I had carrot cake.
Today I slept in an hour later than usual.
Today is barely half over and I have many moments left to spend.
Today is good and I am thankful.
Sunday, May 3, 2009
Lingering
A month of busy-ness has flown by, my life continuing to adapt to the concept of being a student again. Work, home, kids, and now study fill my days and almost make me forget "it".
Until the day scheduled for the semi-annual testing rolls around. And then I am reminded in technicolor and panavision that indeed I do have a chronic illness - one that requires MRI's, dye injections, evoked potential testing, therapy evaluations. Thankfully, all appears well.
However, the frustration of the reminder lingers.
Until the day scheduled for the semi-annual testing rolls around. And then I am reminded in technicolor and panavision that indeed I do have a chronic illness - one that requires MRI's, dye injections, evoked potential testing, therapy evaluations. Thankfully, all appears well.
However, the frustration of the reminder lingers.
Tuesday, March 31, 2009
Tumble
I went out for the evening run on Saturday night. Generally my theory for running is to go just a tiny bit past the point that I begin to think I've used half of my energy resources... then I start wandering back toward home. Which is sort of what happened on Saturday ... except it was feeling so wonderful that on the way back, I decided to push just a bit farther and take a path through a park just for the heck of it. And then fell.
Now, you must understand ... it was just a fall. It was the same kind of fall that ordinary people have all the time in ordinary lives. There was a small ledge ... I decided to step down from it to another area I wanted to explore ... and the landing spot was significantly lower than I anticipated. It was dark. There were shadows. One of those moments when you turn around and look behind you and say "Wow, I didn't realize that step was that deep ... or shallow ... or whatever. Except instead of turning around, I sat up.
Now... you're probably sitting there thinking "Okay, so what does this have to do with MS?"
THAT part began when I got home. Let me point out that I fell ... wiped the blood ... used the light from my phone to do a summary parts check ... then got up, brushed off, and walked the rest of the two miles home. Clearly I was NOT at death's door. But when I walked through the door and my children got the first glance, you would have thought that I had been attacked by coyotes instead of a tumble in the gravel.
And now they've decided that I'm bordering into insanity. You see, I told them how good it felt to sometimes just be a normal person ... without a label ... taking a tumble.
Then ... just to spite the fates ... I ran again Sunday :)
Now, you must understand ... it was just a fall. It was the same kind of fall that ordinary people have all the time in ordinary lives. There was a small ledge ... I decided to step down from it to another area I wanted to explore ... and the landing spot was significantly lower than I anticipated. It was dark. There were shadows. One of those moments when you turn around and look behind you and say "Wow, I didn't realize that step was that deep ... or shallow ... or whatever. Except instead of turning around, I sat up.
Now... you're probably sitting there thinking "Okay, so what does this have to do with MS?"
THAT part began when I got home. Let me point out that I fell ... wiped the blood ... used the light from my phone to do a summary parts check ... then got up, brushed off, and walked the rest of the two miles home. Clearly I was NOT at death's door. But when I walked through the door and my children got the first glance, you would have thought that I had been attacked by coyotes instead of a tumble in the gravel.
And now they've decided that I'm bordering into insanity. You see, I told them how good it felt to sometimes just be a normal person ... without a label ... taking a tumble.
Then ... just to spite the fates ... I ran again Sunday :)
Wednesday, March 25, 2009
Monday, March 23, 2009
Just Because
Today is a day of thankfulness. I have projects to work on... submissions that finally passed scrutiny... kids being silly in the background. I'm blessed to work in an office space that makes me happy, full of favorite things. Yes, it's a girly room... but it's mine :) MS is quiet... blessedly quiet. So today, there are lots of smiles... and today my heart is happy... and today, when the word count is met... I'm going to celebrate... just because.
Friday, March 6, 2009
Guest Post
Guest post at CreatingAGoodLife.com this week ... please stop by and check it out. This is a great site put together by Sara and well worth the visit... excellent content on a variety of subjects.
Thursday, March 5, 2009
Body and Soul
The quilt I snuggle beneath on cold and rainy days wraps me in the love and wisdom of decades of maternal warmth, stitched together with memory. It’s a simple cover, wrought of plain multi-color squares of fabric salvaged from countless sewing projects, no elaborate patterns or fancy needlework. The pink floral my mother wore for family photos in 1969, when my brother and I were tiny towheads with mischief twinkling in our eyes. The orange and white window-pane polyester earned my teen-age self a helping of my father’s rare discipline; you see, I insisted on wearing it adjusted to fit into the age of the mini skirt. The delicate aqua with rosebuds clothed four generations of women at a family gathering by the river, dresses crafted by my great-grandmother on a treadle machine.
Each square tells a different story, wakes a different memory, nurtures a smile or brings a tear… and warms me from the inside out… body and soul.
Each square tells a different story, wakes a different memory, nurtures a smile or brings a tear… and warms me from the inside out… body and soul.
Tuesday, February 24, 2009
Momentum
Couldn't get this to transfer to the post properly... so click the link to go to Momentum... it's worth the visit!!
The magazine of the National Multiple Sclerosis Society
Spring 2009
Volume 2, Number 2
(formerly InsideMS)
Momentum wants to know... about your pet. See the “The many pluses of pets” story in the Healthy Living section and then take our survey.
Table of Contents
COVER STORY
Activism Now! - 2009 Public Policy Priorities for the National MS Society
The first lady on living with MS
Two big wins in 2008
Feature Story
A Heart for Walking
by Judy Hasson
Readers Report on their treatment team
From the Editor: Lighten up
Low Vision Alert: Fitness and low vision? Yes!
On my mind: "If I could... then I would walk a million miles"
The magazine of the National Multiple Sclerosis Society
Spring 2009
Volume 2, Number 2
(formerly InsideMS)
Momentum wants to know... about your pet. See the “The many pluses of pets” story in the Healthy Living section and then take our survey.
Table of Contents
COVER STORY
Activism Now! - 2009 Public Policy Priorities for the National MS Society
The first lady on living with MS
Two big wins in 2008
Feature Story
A Heart for Walking
by Judy Hasson
Readers Report on their treatment team
From the Editor: Lighten up
Low Vision Alert: Fitness and low vision? Yes!
On my mind: "If I could... then I would walk a million miles"
Monday, February 9, 2009
Possibilities
Yesterday I had a mission. A mountain of miscellanea had accumulated in my garage... a thing here, a thing there. When three people tell themselves that they'll just 'put it here until I get to it'... well, it accumulates fast. So I told myself I would sort it and then heft the appropriate pieces to the attic... via the pull down ladder also located in the garage.
With high hopes and high energy, I set to the mission. Only to have to take repeated breaks to bring myself back into the house to cool down... this IS Arizona after all. THEN, the ultimate smack in the face... the ladder proved to be something I could not overcome. The pulling down and 'popping' up of said ladder is something that I've done repeatedly in the time we have lived in this house... but yesterday, my arms simply wouldn't do it. Mind says 'do it'... arms don't obey. And I can't begin to describe the anger and frustration that brought... or how it gnawed at my mind to have to ask for help with it.
You see, MS isn't just invisible to those around us... it's often invisible to the patient themselves. Truthfully, when I set out to do my garage mission, it never crossed my mind that I wouldn't be able to do it... I usually don't think in terms of *can't*. And the treason of my arms... the mutiny of my strength... it comes as a total surprise and often jolts me off my feet. A slap in the face that says "No".
So understand when those around you 'forget' about the MS... and capture every moment of your own that you're allowed to forget. Live the moments as fully as possible... whatever is possible.
(And oh... I've added a new link to my blog list... check it out... full of encouragement and information... Creating a Good Life )
With high hopes and high energy, I set to the mission. Only to have to take repeated breaks to bring myself back into the house to cool down... this IS Arizona after all. THEN, the ultimate smack in the face... the ladder proved to be something I could not overcome. The pulling down and 'popping' up of said ladder is something that I've done repeatedly in the time we have lived in this house... but yesterday, my arms simply wouldn't do it. Mind says 'do it'... arms don't obey. And I can't begin to describe the anger and frustration that brought... or how it gnawed at my mind to have to ask for help with it.
You see, MS isn't just invisible to those around us... it's often invisible to the patient themselves. Truthfully, when I set out to do my garage mission, it never crossed my mind that I wouldn't be able to do it... I usually don't think in terms of *can't*. And the treason of my arms... the mutiny of my strength... it comes as a total surprise and often jolts me off my feet. A slap in the face that says "No".
So understand when those around you 'forget' about the MS... and capture every moment of your own that you're allowed to forget. Live the moments as fully as possible... whatever is possible.
(And oh... I've added a new link to my blog list... check it out... full of encouragement and information... Creating a Good Life )
Friday, February 6, 2009
Naps
I grew up in a family that considered naps a very good thing. My mother and grandparents even had my brother and me convinced that snuggling under a quilt on our beds was a luxurious indulgence... quite the accomplishment! I carried that mindset with me into my married life... and passed it on to my children (who, amazingly enough, bought into the concept as well). One of the things to look forward to on Sunday afternoons was a nice, long nap following church and a big lunch.
In the last few years, more notably during the last three or four, naps have increasingly become a necessity as opposed to a privilege. I have come to resent the time that I am required to 'rest'. I resent having to give up waking hours and the myriad activities associated with that time. I resent having something forced upon me instead of having the freedom to indulge myself as inclined. I resent that what was once an absolute extravagance is now a basic requirement.
In the last few years, more notably during the last three or four, naps have increasingly become a necessity as opposed to a privilege. I have come to resent the time that I am required to 'rest'. I resent having to give up waking hours and the myriad activities associated with that time. I resent having something forced upon me instead of having the freedom to indulge myself as inclined. I resent that what was once an absolute extravagance is now a basic requirement.
Thursday, February 5, 2009
Foggy
Today is foggy... not outside... but inside my head. My neurologist calls it 'MS Mud'... that foggy muck that my thoughts and actions have to battle through some days just to get to the surface.
I live in one of the sunniest places in the world and there are still days when the world seems gray... days when everything seems weighted down by dozens of tiny anchors. Motion seems delayed by seconds.... thoughts require a head start to form. My daughter says "I'm still trying to get used to you having days like this. It isn't you."
She's right. It isn't me. It's MS. And tomorrow, I pray, the fog will clear and once again the real me will be able to come out to play.
I live in one of the sunniest places in the world and there are still days when the world seems gray... days when everything seems weighted down by dozens of tiny anchors. Motion seems delayed by seconds.... thoughts require a head start to form. My daughter says "I'm still trying to get used to you having days like this. It isn't you."
She's right. It isn't me. It's MS. And tomorrow, I pray, the fog will clear and once again the real me will be able to come out to play.
Tuesday, February 3, 2009
Get It
Yesterday was a tough day... woke up feeling like I hadn't been asleep... and actually for the most part I hadn't.
I parked myself on my bed with a book and a quilt... dozed off (thankfully... that was the goal...) and slept for three hours... and of course, woke feeling no more rested than when I closed my eyes.
That is one of my frustrations with MS fatigue. The general assumption is that if one takes a nap, one will wake feeling more rested and refreshed... thus making the investment of time (that could have been spent doing something else) a good one. With MS I can sleep an entire day... or day and night... and not wake feeling any less fatigued than before I slept.... which leaves me feeling that I have wasted a huge block of time... lost time.
I slept fairly well last night... with the help of medication... and still this morning, I'm exhausted.
My family is great... when I'm tired they tell me to go lay down... there's (usually) no guilt trip associated with it either... but it's very hard to explain the extreme frustration that comes with not having the energy to do the things I want to do. They have valid frustrations about things not getting done... but generally seem to believe that it doesn't bother me that I'm not doing what we all think I should be doing. I feel like I've lost a big part of my life at 47... and no one seems to 'get' it.
I parked myself on my bed with a book and a quilt... dozed off (thankfully... that was the goal...) and slept for three hours... and of course, woke feeling no more rested than when I closed my eyes.
That is one of my frustrations with MS fatigue. The general assumption is that if one takes a nap, one will wake feeling more rested and refreshed... thus making the investment of time (that could have been spent doing something else) a good one. With MS I can sleep an entire day... or day and night... and not wake feeling any less fatigued than before I slept.... which leaves me feeling that I have wasted a huge block of time... lost time.
I slept fairly well last night... with the help of medication... and still this morning, I'm exhausted.
My family is great... when I'm tired they tell me to go lay down... there's (usually) no guilt trip associated with it either... but it's very hard to explain the extreme frustration that comes with not having the energy to do the things I want to do. They have valid frustrations about things not getting done... but generally seem to believe that it doesn't bother me that I'm not doing what we all think I should be doing. I feel like I've lost a big part of my life at 47... and no one seems to 'get' it.
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 athttp://www.girlsgoneriding.blogspot.com
______________________________________________________
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 p.m.Jobing.com ArenaFor Tickets Contact:Sean Sanford at (623) 772-3468 or sean.sanford@phoenixcoyotes.com
__________________________________________________
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: http://aza.nationalMSsociety.org
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 athttp://www.girlsgoneriding.blogspot.com
______________________________________________________
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 p.m.Jobing.com ArenaFor Tickets Contact:Sean Sanford at (623) 772-3468 or sean.sanford@phoenixcoyotes.com
__________________________________________________
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: http://aza.nationalMSsociety.org
Friday, January 30, 2009
Sunshine
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...)
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.
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.
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
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 850341-800-344-4867http://aza.nationalMSsociety.org
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 850341-800-344-4867http://aza.nationalMSsociety.org
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.
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.
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.
or
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
Invisible
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
Diagnosis
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!!
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!!
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