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.

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.

Right...so, 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.

Seriously.

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.

twelve. II

I remember the doctor telling us that "we have a girl". I know the exact moment I heard you cry. Your first smile, your first laughter and your first word. I remember the day you first crawled away from me and when you first stood. I'm sure your many firsts to come will dim some of these memories for me. You will grow and time will move faster every year.

But for all the days and years to come the one thing I will never ever forget is the first time you looked in my eyes.

My sweet girl, happy first birthday.

twelve.

I wasn't going to write about today because I didn't want to burst into tears. Especially right now. Make-up and hair just so. I'm going to a fancy mall this afternoon and I want to look like a person, not an exhausted mommy.

But from the moment I woke up this morning I just couldn't get it out of my head. 12 years. My mother has been gone for 12 years.

For some reason I just cant wrap my head around that. It feels like I lost her yesterday.

It will always feel like yesterday.

But 12 years? It's not as profound as 10, not as emotional as 3.

No where near as devastating as 30 will be. When I will officially be the oldest she ever was.

12 seems to suggest a kind of acceptance of the years passing. A finality that only time can provide. It reminds me that no matter how much I would like to do otherwise, I measure my life in terms of years without her.

I still dream of her. Its not like it used to be though, the moment of pure elation upon seeing her; "OH! You're not dead!". Still smelling her in those foggy seconds between sleep and awake. The crushing blow of realization upon waking.

Now I feel almost a sense of trepidation upon meeting her. She's not supposed to be there, in the kitchen by the sink. This is my fathers house now. I feel as if I'm meeting an old friend and I don't know where to begin. My mind always snapping back to my father; wondering where he is.

Long before her death my mother told me that if ever one of them were to die, I should pray it was her. That for security, for safety, my brother and I needed my father.

I'm not sure if she really believed that to be true or the trauma of loosing her own father at 15 was so deeply set that she could not imagine that option for her children.

When my father was diagnosed with cancer, erm 12 years ago, I could see it in her eyes. If it was up to her, she would be the one to leave us.

Even then I saw her in my minds eye. Making a deal with God. Her bargain still rings in my head. Little more then a month from his diagnosis; she was gone.

I remember being little and finding my mother crying in her room over her father. It was ingrained in me so young to fear the loss of a parent. I don't wish that for my daughter, but how am I to avoid it? When with each passing year I take her hand to help light the candle in my mothers memory...and the next day light her birthday candle in celebration.

For now I know this, I miss my mother every day of my life.

But never more then today when I lost her.

And never more then tomorrow when I became her.

my dog ate my blogosphere.

Not that I even have a dog but if I did I bet you it would have....

I've been a total flake the last few months I admit, and I'm starting to feel really guilty about it. When I think about it I have all of these perfectly sound explanations for my absence...but when you pile them all together they just sound like excuses.

I am famous for excuses.

So here they are, my lame attempts to rationalize my guilt over my blog abandonment issues.

-I have been really really sick. Truly. For over a month I was on my back. A cold, MS, recovery, some weird hacking disease transmitted to me by an evil mouth breather at a play group.

-Due to said illnesses I have been napping when the baby naps and therefore loosing all of my off-duty parent web surfing time.

-I've struck a deal with Spouse that when he comes home the computer gets turned off.

-My absence from the computer is in direct proportion to the mobility of my baby.

-My absence from the computer is in direct proportion to the neediness of my baby who, whenever I plop down at the desk, immediately stops what she is doing to whine and cry at my feet until I return to my spot on the floor where she promptly leaves me to go chase cats.

-98% of my computer time is spent on Facebook playing Scrabble. I have a serious addiction issue but I'm also frighteningly good at it.

-My computer is a relic. I have 0% left on my hard drive (seriously) and loading any website, much less my blog reader, takes for-evah. This gives my baby ample time to shoot on over here and commence whining...and bouncing up and down while pulling on my pant leg...it's so freaking cute!

-Even when said blog reader does load it has a gazillion error messages and won't let me read/link to the hundreds of back logged posts I am yet to read. Therefore I eventually give up and walk away.

-Something did seriously eat my blogosphere...well blog reader really. Among all of those error messages I have the mystery of the disappearing~reappearing posts. I was so relieved to see no one else was really writing either. It made me feel like I wasn't the only one. This was until one day I checked and people had like 30 some odd posts out of no where. Just a little glitch and I swear me and my ancient computer are trying to catch up.

-I am totally depressed and don't want to talk about it.

-Ok, I'll talk about it, a little. This is the time of year my Mom died. We are quickly approaching the day, December 3rd, and each day it gets just a little harder to function. On that same note however I have the pending first birthday of my baby, December 4th, and I'm really struggling with the duality of the whole situation. What a great opportunity to write and share my feelings with others who know exactly what I'm going through you say? How healthy it would be for me to get this crap off the hamster wheel in my head? Yeah well, since when do we do what we know is healthy for us?

Since when do I do what is healthy for me?

Well I guess that last one really is the heart of it.

Thank you for those of you who stick with me even though I am totally giving nothing back right now in our relationship.

You and Spouse are in the same boat.

bubble.

Dear Fellow Mommy,

You selfish twit.

Did you think it was a good idea to venture out to a play group activity sick?

What stroke of genius did it take for you to not only park you snuffly ass next to me and my baby but for you to turn your head in our direction and cough.

Twice.

I understand I can't live in a bubble (although I certainly do try my hardest) but I would expect a certain amount of common sense and courtesy when nursing whatever illness you have.

Why haven't you seen me in three weeks? That's easy, because we have been sick. Unlike you I choose to stay within the confines of my home when down with disease.

I have been living the last month or so of my life mentally curled under my blankets in the fetal position; things are not all rosy and half full for me right now. I made a considerable effort this week to attend the play group activity for the good of my cagey daughter; we both needed to get out.

And the thanks I get? A cough. A sore throat. Geee thanks.

Now even if my immune system was not seriously compromised on a level you could not understand, I would be miffed.

Because you are sick and have no business around other moms and their babys. Got that? Food store I get, we all have to live....superfluous 1/2 hour activity that your aggressive and mean baby doesn't even seem to enjoy? Not so much.

So in short. To you and to your fellow germ ridden bone heads.

Stay the hell home.

Thanks!