MS Disease Guide
Wednesday, August 31, 2011
Saturday, September 4, 2010
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 ...
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 ...
Sunday, March 14, 2010
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?
"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?
Friday, February 12, 2010
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.
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.
Wednesday, January 20, 2010
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.
Sunday, December 27, 2009
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.
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.
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
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