3 Years...

I'm approaching my three-year MS remission anniversary.

Just as I started thinking about it, JUST as I started getting excited, I got an email request from my mother to counsel a family friend who was dealing with the news of a loved one newly-diagnosed.

I happened to be on my way to an MS focus group that night, too.

As I've moved farther away from the role of "traumatized patient," through the land of "damaged goods," to "triumphant survivor," it's interesting to me to hear/observe the difference in how I tell my story now. This sounds infinitely more confident -- wise -- than how I told it at the one- and two-year marks (because let's face it; I like to blab; I've been writing it down for a while).

I like the ring it's got to it now...

Subject: Hi from San Francisco!
From: Lisa Wisniewski
Sent: Mon 1/05/09 4:22 PM
To: Mary Granata
Cc: Marge Wisniewski

Hi Mary!

Hope you don't mind -- my mom gave me your email address. She told me that Angie's brother-in-law was just diagnosed with MS and that they're very worried. That makes sense -- it's very scary! Especially in the beginning. But it doesn't stay that scary, so I just thought I would drop you a note that might hopefully make you all feel a little better...

It's been almost four years now since I was diagnosed; you might remember. Things were bad in the beginning for me; really bad. I had two relapses in the first 8 months, went through two different treatment courses and nothing seemed to be helping it. Just more brain lesions, more hospital stays... Blah blah blah. I was pretty sure the way things were going, I'd be spending half of every year on my back in bed, IF I was lucky... But it just takes some time to figure it out.

The way they talk to you about it in the beginning... It seems hopeless. The very first thing they said to me after my follow-up appointment was, "Well, as you know, you now have a clinically definite diagnosis. There is no cure for multiple sclerosis." I was like, "FXXX YOU! Two weeks ago I was perfectly normal! I didn't even COUGH, for crying out loud!"

And that's the worst thing they can do for you, because MS is in your brain. You can't get freaked out, you can't get stressed out, worn out, you can't get depressed. It WILL affect it. You have to stay positive, you have to believe you can control it. The day things turned around for me was the day I stopped being afraid.

About that, I DO NOT KID.

He should start treatment right away, like they tell him to, but he shouldn't put all his eggs in that basket. The first treatment I was on failed me. It didn't do ANYTHING for me. For eight months I gave myself awful, painful, intramuscular injections believing they would save me from being a cripple. I got the flu after every single injection. I ran a fever for eight months. I struggled through eight months of work, so sick from interferon that I could barely function (it was winter in Detroit, too; ugh). And then one day I woke up without legs or a torso again. And my MRI showed all kinds of new lesion activity. Man, did I feel cheated. But that's how this disease works. Not every drug works for everyone. It will take time, and I had to start all over. A new drug. A new nurse, coming to my house to train me. New injection techniques. A new system to keep track of everything. New paperwork with the insurance company...

Which is why I believe you have to seek out a deeper treatment than drugs.

You have to make tough decisions to simplify life, and remove stressors. I quit my job. I ended a relationship that was crippling me. I moved far away and got a fresh start. Maybe he can't do all those things, but he has to look hard and uncover what he CAN do to make himself truly happy. Happiness will equal health.

That strategy -- that won't fail him.

And don't be afraid to look at alternative therapy. Until the early 90s, there was absolutely NOTHING they did for people with MS. They just sent you home, and told you to hope for the best. Obviously, a lot of people weren't willing to accept that. So there is TONS of information on alternative therapies out there. I've become very devoted to healthy eating. I don't eat any animal products other than fish (because they're rich in omega fatty acids, which strengthen the blood-brain barrier, and which some doctors believe MS patients are in dire need of).

Since I finally landed on a cocktail of the right therapy (in the end I chose the one that DOESN'T have the greatest clinical data, but it doesn't make me as sick, and I value my quality of life), got my diet going, and made some major life revisions to put myself in a better state of mind, I have been nearly symptom-free. On Valentine's Day, I'll celebrate my three-year remission anniversary. On Valentine's Day 2006, they briefly thought I might be progressive. That's a huge stride.

But the most important thing is that I'm not afraid of MS any more. It bothers me some times, sure -- but no more than a lot of other things in life.

So best of luck to him. Please feel free to give him my email if he ever wants to talk, and all my love to you and yours. Happy new year!

Love,

Lisa :)