MS News Update/NY Times

MS Disease Guide

The Dating Game

Dating with MS is definitely an adventure of its own. At what point do you tell the person you have a chronic illness? It adds to the multitude of unknowns in any relationship. You know ... the questions of when do you tell them that you're really falling for them ... or when do you call after a date ... or any of those silly quandaries that we manage to create for ourselves. After three dates? Three months? We do make things complicated, don't we?

I live with a sense of fair play that others sometimes find a bit ridiculous ... but really ... don't you think someone should know something like this before they've totally committed to a relationship? Don't you think they should know what they're getting into?

You see ... in many ways, I am incredibly fortunate. To the casual observer ... and sometimes even the not so casual ... MS is virtually invisible in my life. An outsider can't see my fatigue ... or know that the pain in my neck and shoulder are making focusing on the simplest things difficult. Even that invisibility is double-edged, though. It means that I have the benefit of not having an instant strike against me when people first meet me. And as much as I would like to believe that a wheelchair or a cane or weakness in an arm or leg don't produce bias in others, I don't really believe that. Now, don't get me wrong ... I believe those are hurdles we can overcome ... I just find it unfortunate that the overcoming is necessary. Who I am hasn't changed because I have MS and my intelligence hasn't been diminished by my time keeping its company.

Oh, and the fear that comes along with the decision to tell! The wondering if the person will bolt in fear ... or treat us differently ... or judge us for not telling sooner ... or a million other things. And the immeasurable joy of having someone merely say "Oh, okay" and treat you no differently.

Your comments and contributions on the topic are eagerly anticipated ...

Dance

A few years ago ... before the diagnosis ... I decided that I'd been told not to dance long enough. So I talked some friends into coming along for the ride and I began to dance. At first, free-style and fun ... then I decided I wanted to do some of the cool things I saw other people doing ... and signed up for lessons. Of course, by the time I reached that point, I had officially been told that I had MS ... and had some (very minor) balance issues when I became excessively tired or overheated. I began slow ... with waltz and some social/ballroom kind of stuff. Then some country ... and then some Latin. There is a distinct hum in the background - the sound of dozens of people saying 'can't' or 'shouldn't' - the naysayers. But do you know how much fun I'm having? Do you realize that three or four nights a week I get a work-out that is not at all boring or unpleasant? Do you understand that I'm living life and squeezing every second of joy from it that I can? Do you see that I refuse to allow a moment of life pass by unlived? So I will never win a dance competition ... instead I'll laugh and make friends and treasure the moments. And, as they say ... "Dance like no one is watching." :)

"I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible. I choose to risk my significance. To live so that which comes to me as seed ... goes to the next as blossom. And that which comes to me as blossom, goes on as fruit."

How many moments of your life do you allow to drift by unused because of the MS label?

Your Health

Previously mentioned article ... let people know that you want action taken on these drugs. They've been on the back burner long enough.

MS Patients May Soon Bypass Painful Injections : NPR

www.npr.org

About 400,000 Americans have multiple sclerosis, and up until now, the only drugs offered to them to slow the course of the disease had to be injected or dripped into a vein. But soon, it seems, they will have an alternative to this painful regimen: drugs that can be taken by mouth.

MS Patients May Soon Bypass Painful Injections

The first round of testing for two oral MS therapies has been completed. Go here to read more in this story from NPR. Not only would these therapies eliminate the need for regular injections, their results are significantly higher than that of therapies like Copaxone.

Perfectly Fine

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.

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

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?

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.

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.

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 :)

"Tackle MS With Positive Thought"

Must read article... Tackle MS With Positive Thought

Inspiring and validating... go read it!

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.

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.

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.

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"

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 )

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.

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.

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.