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!