Pity Party

Everyone falls off the wagon. And right now, I'm feeling sorry for myself.

I'm sick, and I'm highly symptomatic. I'm constantly being reminded of all the reasons I hate having MS.

This past weekend, some little bug must have arrived in my system, unbeknownst to me. I wasn't feeling sick yet, but something was there. Because as I was walking home from Trent's house on Sunday, I began to feel as though BUGS were crawling all over my back. Quick, prickly little electrical sensations, shooting in every direction. I kept trying to rub or scratch them out, but it was just impossible. I felt lightheaded from time to time. It was frustrating, and disorienting. I was crying. It was the longest mile-walk home ever. But I walked it. I didn't turn back, I didn't call a cab, I didn't even wait for a bus.

The little sensations nagged at me throughout the day Sunday, but by evening I was learning to ignore them. Even after I saw a movie that brought back some horribly painful memories and put me in an emotional tailspin. Monday passed fairly uneventfully. I got some nice recognition at work. I thought, "hey, maybe this week is off to a good start!"

And then on Tuesday, the bugs REALLY arrived.

Whatever cold or flu strain had settled in my system decided to wake up on Tuesday, the biggest day of my year thus far. I had a major project alpha release happening at work. I was majorly stressed out. This has something to do with it, I'm sure. I've known for a while now that MS and stress go hand-in-hand. Well...

By 3:00 in the afternoon I could barely hold my head up. I must have been running a fever because I was going to the bathroom every 15 minutes or so to get paper towel to wipe the sweat off my face, just so I could keep up my "normal" appearance until the project went out the door at 4:00 on the UPS truck.

I didn't eat a thing all day. I just worked, worked, worked, until it was done. Once I saw that truck drive away, I was outtie. I went home, walked in the door, and collapsed in a pool of my own sweat. I sweated out the fever, all night long. I didn't even move. I was in so much pain -- every inch of my body hurt -- I couldn't even stand to move under the covers. I was hot, I was cold, but I just lay there.

Now, I woke up in the morning and I felt slightly better. I was thinking more clearly, at least. But I felt like a weighty cold was setting in. And then the worry began. Because the pieces of the puzzle started to fall together... Stress... Flu-like symptoms... MS symptoms flaring... It was like winter 2006 all over again.

People with MS cannot get stressed out. Of course we DO, but beyond a certain point, we can't. And I did. This lead to me catching something really nasty. Because when I get stressed (and this is just Dr. Lisa talking here), my brain goes, "Ooh... BUSY BUSY BUSY!!!" And my immune system goes, "Alright -- LUNCH!"

So I wound up with this killer flu, plus all my favorite MS symptoms. Because my immune system has been busy doing things it's not supposed to do. Like EATING MY BRAIN AND SPINAL CORD. Which caused my favorite MS symptom of all, on Thursday...

I started shitting myself.

It's so, so wonderful, to be 30 years old and to spontaneously shit yourself on the sidewalk outside your house at 7:30 in the morning. It gives you such glorious visions of your future. Gosh, I LOVE that little pea-sized lesion on my cervical spinal cord that screws up all my internal workings. It really has made me stop caring about SO much in this life.

My hair? FUCK IT.

My clothes? FUCK 'EM (they all have stains you-know-where, anyway).

My weight? WHATEVER!

What I'm doing Saturday night? FUCK IF I CARE!!!

And just to add a nice, extra helping of stress to my life yesterday, I went to the pharmacy and they tried to randomly charge me $2,465 for a monthly kit of my daily injections and $685 for a monthly refill of my "brain pills." They dropped a bombshell on me and told me that my neurologist (Kaiser San Francisco's Chief of Neurology) had left Kaiser without informing me. That I had been prescribed this stuff by a "non-provider."

Uh, mistake. But all I could do was shriek, throw my planner at the clerk, and burst into tears in the middle of the (very crowded) hospital pharmacy.

Wait -- another glorious vision of the future: I better never get laid off, and lose my health insurance...

So now it's Friday afternoon and I'm still exhaustingly sick, and I have all these other crazy MS symptoms going on. Because now I can't stop my immune system from doing the stupid shit it's doing to my brain. I can't turn it off there and make it go do what it's supposed to do. And let me tell you, when MS people get the flu, we don't get it like you do. You have a healthy immune system that makes even the easy shit easier.

You think you feel bad, but you could feel so much worse. Even if I wasn't stressed out right now, my body would still by confused about how to kill this asshole bug. Confused naturally, and confused thanks to all the (expensive!) drugs I take to intentionally confuse it.

Just because I have some bug, it's automatically harder to move. Like, harder to pick up my legs. Walking up the six shallow steps to my office is like the hardest thing I do all day, because it's in plain sight of everyone I work with. And I seriously doubt I can do it.

Just because I have a few germs, I might be sitting in a meeting making eye contact with you, and all of a sudden, my whole field of vision starts to shake. It makes me want to puke, but I just pretend like all's normal, and keep talking -- "YES, we can do this for 21k!"

Just because I'm sick, and I have MS I might be driving the carpool car and my feet start to burn so bad I feel like I can't keep them on the gas pedal any more. But I better -- because I could kill us if I don't!

We all have our crosses to bear. But this is why I feel sorry for myself right now. And why I won't now that I've written it.

Attitude -- back UP!!!

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 :)