it could be worse.

That's my general attitude about my health.

People ask me how I am...my 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.

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.

well crap.

My heart is breaking.

My MS flared out of nowhere, I don't know what triggered it but it seems to be firing on all cylinders. I submitted to my doctor and had new MRI's run. They came back 'active'. Dangerous.

Tomorrow will be day 4 of The Juice. It could stretch to day 5. I'm a pin cushion. Today was my 8th stick with a needle/IV. If it weren't for the bruises I would have lost count.

I have to go back on my regular medication. Rebif. An injectable drug I can not breastfeed while taking.

I have to stop breastfeeding the baby. For good. Now.

And for that, not my illness, or the sticks, or the hours in an infusion room away from my family; my heart is breaking.

I have to stop. For real this time.

I have to keep saying it because I can not even begin to process this without hysterics.

I know I'm lucky, I know so many woman who don't get 2 hours; 2 weeks; 2 months nursing.

I've had almost 11 months.

And for every break of my heart I have a baby pulling at my shirt in tears; banging her head against me. She is getting desperate. I feel as if a fissure has opened up between us, I don't know what to do.

I try to look at the bright side. I can buy real bras again and be comfortable...

Maybe I'll get some new non-mommy undies to go with them?

Now I don't have to stress about being bit?

Not much of a bright side.

For the record; 2 years ago tonight, Halloween night, was my last shot of Rebif. I remembered the elation I felt when I took it. Freedom, for at least a little while. From the constant needles and medications. We were going to try and have a baby. That last shot meant the first step for a whole new life.

In the back of my mind the reality of having to go back to it was always there. I just didn't realize when it came down to it, how much it was going to sting...or how much nursing would change me.

Tonight those 2 years of freedom and our 11 nursing months just doesn't feel like enough for me.

It certainly isn't enough for her.

dirty nickels.

Well I should have had no worries on the baby weening front. She has been refusing the bottle more and more. Especially from me.

Instead she tears at my shirt and bangs her head against my chest in frustration. She wants to nurse.

I need her to nurse.

Today was my last day of treatment. While there is conflicting evidence as to what the drugs would do to her...most doctors say nothing...lactation consultant says...nothing...I just can not reconcile myself with it.

Because if The Juice makes me feel like this....

What is it going to do to my baby?

all juiced up with nowhere to go.

I settled back into the hospital grade Lazy Boy and took in my surroundings. I looked out the window to the same river stone covered rooftop that I saw from the birthing center only 6 months ago. I was just on the other side of the building now; this time at least I could see blue sky and patches of the green tree line. All too familiar with the process of infusion this was my first time at my country hospitals Day IV unit.

It made the same effort towards comfort as the treatment center at The University of Pennsylvania where I brought my father for his Chemo 12 years ago. The only major difference was the cozy size of the room in which I now sat. Only four chairs instead of the countless rows of cubbies, tubes and stands at the large hospital...the drone of the hundred or so infusion boxes pumping away.

Now it was just me, just my tubes and droning and pumping.

The paralysing fear of a few weeks ago finally settled into bitter acceptance. While I have been plagued by problems in my right foot for years, the numbness on the bottom of my toes and in the arch of my foot was definitively new.

That is one of the things about MS. It keeps you guessing. New symptom or not new? Sick or not sick? When do you call for help?

For me the final straw was last Thursday when I realized that each time the tingles in my leg and foot subsided I had just lost a little bit more sensation. For me, I call when the fear of damage out weighs the fear of treatment.

Spouse and I were in a heated discussion about the complications of treatment. We were making the short list of the people who could maybe, possibly lend us a hand with the baby so I could get help. The phone rang and it was one of my best friends, my blanket girl (that is what I call my ladies, blanket girls) Uma. She was calling to say hello; rare that we get that chance in our busy lives.

My question was immediate, a teacher she was just starting her summer vacation.

Could she come?

The answer, as it always is with old trusted friends. Of course.

I was rattled with guilt when I hung up the phone. Her husbands birthday, gas prices, her second job...the things which people sacrifice for dear friends. For friends who are family.

I was distracted over the weekend with yet another trip to New Jersey. When we returned home my pending infusion of 'The Juice' (Solumedrol steroids) was all I could focus on. I whined until I made myself sick. I promised Spouse as we lay in bed Sunday night that in the morning I would 'Mom Up', I would suck it up and get it done.

The infusion was much smoother then I anticipated. The advantage of moving to a small town. I read my book uninterrupted and reacquainted myself with the cool sensation of the IV drip and the taste of dirty nickels flooding my senses.

That is a fun side effect of The Juice, your mouth and nose filled with spare change. Your skin crawling from the foreign substance flowing into your veins. The oncoming hot flashes and ravenous bouts of hunger.

The being wide awake at 4AM to blog about being wide awake at 4AM.

My guilt and fears are subsiding. Uma and Riley adore each other. Riley is taking to the bottle and the formula (just as long as it is 98.6 degrees...that one took a little while to figure out).

I have lingering bits of fear over loosing my milk, over my sweet little girl weaning herself this week. But I know now that there is nothing I can do. I have no choice, she needs me healthy more then she needs to breast feed. My heart broke a little when I nursed her for the last time before leaving for the hospital. She curled against my skin and I stroked her hair. She let out a deep satisfied sigh and she stroked me back.

I am exhausted. Terrible that my doctors tell me to rest all the while giving me a drug that makes it impossible. I am exhausted, but I am amped.

I will eat, I will pump and then I will go curl myself around a sleeping Spouse and wait for morning.

Another day of being away from my baby and in a plastic covered Lazy Boy. Another day of dirty nickels and a patch of green tree line.

I look forward to another day closer to life returning to normal and pretending that this week never happened.