Wednesday, February 25, 2009

it could be worse.

That's my general attitude about my health.

People ask me how I answer; It could be worse.

It's the first thing I said when I was diagnosed 3 years ago. I don't have cancer right? It could be worse.

I couldn't feel my right leg, I couldn't turn my head and walk at the same time without falling over.

It could be worse.

Then I got better, so much better...and then pregnant, and then 100% better. And when people asked me how I was I said "I've been worse".

So now that disease begins to creep back into my body, now that it starts to win the occasional battle I remind myself. It could be worse, it has been worse and if it's up to me it's not going to get any worse then it is right now.

I have gone to bed everyday for the last few weeks saying the same thing. 3 years ago you could stick a needle in my right ankle and I wouldn't have felt it. Today, that is not the case and I think I would kick you if you tried.

So I lay my head on my pillow and repeat it again and again and I concentrate on my left eye. In the morning maybe my vision wont be as blurry. A week from now maybe I won't be getting headaches anymore from straining to see. 3 years from now I will look back at this time in my disease and remember.

It's been worse.

Friday, February 20, 2009

for the benefit of your search engine.

I started back on my MS medication, Rebif about a month ago.

Originally I avoided returning to my thrice weekly injections because I thought it would mean I had to stop breast feeding (and I was like totally La Leche crazy about breast feeding). For a year I risked my own health to continue nursing.

When my doctors told me I no longer had a choice I was devastated. Nursing was so second nature, so much a part of my relationship with my child that I couldn't, wouldn't walk away. I became my own advocate. I started researching and talking and investigating.

At the end of a month I was privy to information that is not so easy to come by. And for the benefit of any other woman with MS who needs the answers to the same questions I had, I say wrap your Google keywords around this.

Multiple Sclerosis, Breast Feeding, Nursing, Rebif, Interferon.

Here is what I found out.

Nursing and taking Rebif is possible. I was given information from my local lactation consultant who used a book written by a Dr. Hale. I brought this research to my doctors and the baby's doctor. They are fully supportive of the information I found.

The drug company has a blanket statement of "don't do it" because they a) have done insufficient research and b) refuse legal responsibilities. I get that. But it's not the whole story.

Dr. Hale has done studies on breast feeding mothers and this drug. He has tested the milk.

Rebif is an Interferon. A protein naturally produced in the human body.

On a molecular level it is too large to pass into breast milk in measurable amounts.

Even if it did, the reason why it's an injectable is because the GI track of the human body destroys it.

Call me crazy but that was good enough for me and I am still nursing. Granted Riley is 15 months old and can go days without wanting it, but if she asks it's there.

I only wish I had taken hold of the situation sooner. Because while medication is no cure for MS, it can certainly slow its progression....and that's what it has been doing for the last year. Progressing.

Nursing or not nursing is a personal choice. Dealing with this disease and negotiating the options is personal. No one is going to do it for you, no one is going to make your choices.

I agonized over this decision. Even with the knowledge I have today I would still have waited 6 months before returning to the medication, but I would have been informed. Personally, I like to know all sides of a story.

Monday, February 16, 2009

then don't say anything at all.

So I haven't exactly been the best blogger of late. I checked the stamp on my last post. December 4th, gawd. Talk about being a slacker. I've been reading but I can't tell you the last time I commented.

Well ok, I can. It was like 5 minutes ago on The New Girls new news.

The thing is though I try to subscribe to the "If you can't say anything nice" theory. And lately I just haven't been up to nice.

Whats dragged me from my hole? This...

Where is Clink? Where is Clink?
Hope you're ok! Hope you're ok!
We miss your witty self We miss your witty self
Come back please Come back please
Sung to the tune of "where is thumbkin"

That was a comment from Swiggy. Too much right. So I figured I owed maybe a teeny little update to my reader(s).

Well...I'm not up for it. It's just too much right now. In the thick of it you see.

So. Something I have spent a good amount of time thinking about these last few months.

Fucking Sesame Street., when Riley turned one I realized that crap! I had never let this kid watch TV with the exception of Football like 24-7 for 16 weeks ; so maybe I owed her a little puppet time. I flipped on the big Sesame for the first time since I watched it as a kid.


This is what I have learned and I am none too happy.

Snuffalufagus is no longer invisible. WTF?

Elmo is the MC leaving poor Big Bird to sit on a door step and shake a cup for spare change just so he and Snuffy can get by one more day.

Oh and on that Elmo thing...totally baby crack. Riley is obsessed, this is her guy. So much so that when an older episode comes on when Big Bird was still top puppet, she points and whines at the TV until I make Elmo magically appear with the power of my modern day DVR.

Oscar the Grouch has a girlfriend. ummm....

Maria and Gordon NEVER age....which makes me wonder...are they perhaps puppets? Because they look just as fresh as they did in "Follow That Bird" which is the last time I remember seeing them.

The little letter and number of the day skits are EXACTLY the same as 20 years ago.

Bert and Ernie totally don't get any play and I wonder if it's because of all the rumors.

Elmo has a chick in his life called "Abby" and she is a fairy and can fly and talk to her Mommy through her wand. They are reaching here right? Or is it just me?

Regardless, Riley loves this stuff so I suffer through. I buy the merchandise and make her Elmo dance for her at bed time because it makes her laugh and laugh.

And that's what its all about right? Making them happy? Even if it means we have to buy into imaginary friends no longer being imaginary and furry little monsters who refer to themselves in the third person all the time! So maddening.

But in all fairness to said furry red monster. When Elmo goes to "ask a baby" in his little bit it makes me smile. And for a moment I see what Riley sees. The cutest friendliest furriest cat there ever was.

Because that's what she calls him. Loudly...and a lot....CAAAATTTTTTTT!!!!!!

Now...Promise. A real update and real comments and real involvement back in my blogger life...sooner then later.