Monday, April 2, 2012

I Stared at My Computer for 5 Minutes Trying to Come Up With a Clever Title. I Failed.

I've been avoiding making this post. I don't know how to make it funny or enjoyable to read. And I don't want you to know how much I'm struggling. I'm angry and bitter and the reflex reaction of everyone I've told is to pity me, which only makes it even more clear that I'm fuckity fuck fuck fucked. Which kind of makes me want to punch things. I think you all know where this is going:

I got the results of my spinal tap, which have confirmed MS (as much as you can confirm MS without a recurrent episode). Doctor says I have all the markers for it, plus blah blah blah medical stuff. And so I have to start on treatment.

On the upside, apparently my insurance is going to cover all but a $50 per month co-pay on my medication, and I qualify for the pharmaceutical company's co-pay program so they are actually even going to cover the $50 a month for me. That is pretty much the only upside though, the fact that this incredibly expensive medication isn't going to bankrupt me.

When I had my first symptoms, back at the end of December/early January, it took me almost 2 months to feel completely back to normal. And during that time when I felt tired and fuzzy and off, it was easier to say "yeah, there is definitely something wrong here", but once I snapped back to being me again, I guess I went into denial. My spinal MRI came back clean. My hearing and vision tests were normal. And so I started to think about how stressed I was in December, running around every day after work and then every weekend, trying to get ready for Christmas. I had myself pretty convinced that it was all a big coincidence. The brain lesions could have been from anything, especially considering my klutzy nature and my tendency to fall and smack my head on shit. And the lesions? They weren't even inflamed! They were tiny, inconsequential things that showed no exacerbation and no improvement. And the weakness and exhaustion were surely side effects of the steroids.

Truth be told, when I went in to get that spinal tap, I fully expected it to come back showing nothing of consequence. My doctor had already made it clear that that doesn't actually rule out MS, but in my own mind, it was going to. Because I'm too strong to have something like this.

Except that clearly, I am not. Because I do have it.

There's the immediate stuff I need to deal with. The fact that I finally feel like myself again, not sick or tired like I did for the first 2 months of this year, is making it really hard for me to deal with starting this medication. It's an injectable, which sucks right off the bat. But I've done that before. I took Lovenox when I was pregnant with Caitlyn. I don't look forward to the injections, but I can handle them. It's dealing with the side effects that's getting to me. It's the fact that the "flu-like symptoms" "USUALLY go away in 2-3 months". Usually. It's a little ironic to me. To finally feel like myself again, to be able to stay me as long as possible, to try to stop the progression of this disease, I have to inject myself with this medicine that is going to make me feel sick for the next several months. It's a cycle that will seemingly go on forever, as is the nature of this disease. Exacerbation and remission. So starting the meds, to me, is like a trial run for being sick all the time. I get a few months of being myself- the person, the wife, the friend, the mother that I see myself as, then I have to give that up and slip into being this person I don't even know: sick, tired, fuzzy, unable to focus on my daughter and my relationships and the things that matter most to me. A person in survival mode. Survival mode is not how I want to live half of my life.

Then there's the longer term stuff. I've waffled a bit on having another baby, even before I knew I would spend my life being sick. It's been a tough decision. As a person who grew up with 3 siblings, the idea of Caitlyn being an only child feels wrong to me, like I'm depriving her of something in not giving her a brother or sister. On the one hand, with this new information, I feel more inclined to have another baby. I don't know how long I'll have before this disease becomes unmanagable. Hopefully decades, but that certainly isn't guaranteed. So I think of Caitlyn being a little older, a teenager maybe, trying to cope with going through her own changes and maturation and having her childhood taken from her by having to help take care of her disease-stricken mother. And I wonder if having a sibling, someone who truly understands what she's going through, someone in the same boat, someone to talk to when she needs to say how much she hates taking care of me and she wishes she had a normal mom like all her friends, might ease that burden a little bit. Because burdening Caitlyn feels like the biggest failure I could have as a parent. I can't relieve her of the burden completely, she loves me and I know she will be there for me even if I tell her she doesn't need to be, but maybe having a sibling to help carry it will make it easier for her, to give her a break, a sense that she doesn't always have to be there.

On the other side of that coin, having another baby feels so selfish. Because relieving some of Caitlyn's burden, a burden I certainly didn't choose for her because I didn't know about this disease before she was born, means choosing to actively inflict it on another child. And how can I make a choice like that?

If I do decide to have another child, it's a decision that needs to happen soon. The longer I wait, the more likely it is that I'll have progression of my symptoms. If I'm going to do this, I can't afford to wait. Which wouldn't be so bad, if I just had to have Rodolfo roll on top of me for a few minutes a couple of weeks after I had my period. But it doesn't happen like that for us. So in addition to everything else that makes this decision so hard, all the pros and cons that already exist, now we have to figure out if we can afford to spend $8000 or so on IVF (we can't, in case you are wondering. Which really means we have to decide if we want to go back into debt to have another baby.)

And then, if I decide to wait, or not have a baby at all, there's the issue of birth control. The medication I'll be on causes miscarriages, so I would absolutely need to stop taking it before deciding to get pregnant. And that isn't such a problem, really. The problem is the fact that, because of our fertility issues, we don't use any birth control, ever (or at least not in the last 5 or 6 years). Not even the trusty old pull-out. Because our chances of me getting pregnant are so slim that it would be a miracle if it happened. A miracle we would have happily welcomed. A miracle I've always secretly hoped for. Yet another thing MS will take from me. Because I can't hope for that anymore. I can't hope to get miraculously pregnant, because my medications could kill my baby. And so I have to go on some sort of birth control, JUST IN CASE.

In fact, with all these tests and shit, I've found the issue of birth control comes up a lot. When I had contrast MRIs, I was grilled about the possibility of being pregnant. Same for when I had the spinal tap. As it turns out, medical professionals don't really appreciate the answer "probably not because my husband has shitty sperm, but I guess it's technically possible". They do not appreciate that answer at all. It's really frustrating because I always wanted to keep that little bit of hope alive that maybe it would happen on it's own, and now I can't even have that.

I don't know. I'm pissed off and bitter and scared, and I don't know what to do with any of it. My current plan is to get very, very drunk when I go on vacation in 2 weeks.

10 comments:

Nadine Nell said...

Why is this labeled with "blame it on the alcohol?" Two weeks, my dude. Less than two weeks.

It sucks you have MS but maybe you won't even HAVE side effects. They're possible but not a certainty! I go into any medication scenario with the thought of "I probably will not have side effects." And then I usually don't. Because of the power of positive thinking, prayer and God.

Yes God. Because with MS, you need to turn to salvation now. Or make a pact with the devil. A choice must be made.

Totally get pregnant right after vacation.

And the other thing, I'll send you that stuff from the Montel Williams episode of Dr. Oz how he naturally deals with his MS with different foods, smoothies and vitamin supplements. He says it helps his energy and he feels completely normal now vs. before when he was fatigued all the time.

But that doesn't have to be you anyways. This thing, whatever it is to you, is personal to YOU and no two cases are identical. You gonna be ok yo.

Helen said...

I am new to your blog, but was struck by the "About Me" page and you saying that you write for your daughter so she knows who you are.

I think, that after you face these initial revelations that treatment and medications and fitting this new diagnosis into your big picture, you will find a way to make it your own, to own it, and to keep going.

You've done tragedy. You made it through. As I said, I'm a new reader, but from what I've read so far, I think that you can and will kick ass.

And that doesn't mean, of course, that this whole situation doesn't suck big time. It does. I'm scared and sad for you. Use all those emotions and go with your gut. There's no way to know what the right decision is, so make the decision that feels right to you.

Gia said...

Ugh, I am so so so sorry the news isn't better. What an awful thing you have to struggle with.

That being said, I think you have a great plan: booze and vacation.

Jana said...

I've been reading your blog for a while and I've only started commenting recently, but I believe that you can make it. I know that it will take a tremendous amount of energy and that some days will totally suck hairy balls. But your daughter and whatever new baby might come up, will give their mom mad props for fighting for them and fighting for herself. My mom always tells me that you can only have one day to have a pity party. Then after that day, you gotta pick yourself up and deal with the shit. Take your vacation - make it filled with booze and fun. Then come back and tackle it all again, because I know that you can do it!

AKD said...

I don't want to give you the sweet, kind words of sympathy that naturally spring to my fingers, because I know you don't want that.

What you deserve is to be pissed off for a little while. First infertility, then Nicholas being taken, now this. It isn't fair, and it shouldn't always have to be you who has to be strong.

All that said... You are going to make MS your bitch. After you get done being Madame frustrated, you will have a plan. Just like you had with IVF and Lovenox. You will get through this because you are a fighter.

I wish the decision about another child were easy for you. I know how hard it is even WITHOUT the MS issue, and this is a huge wrinkle. I don't know if you are one to pray or meditate, but I hope you are brought clarity.

Hugs, hugs.

AKD said...

Madame? Thanks, autocorrect.

Front Desk Ninja said...

Dude, you know my thoughts.

But I do think that another baby should happen.
And its middle name should be Tiberius. Boy or girl.

I'm an only child. I hate it. I have slapped my friends with siblings before for cursing them and hating them, because it's true. You nailed it, with the only child never having anyone else who really understands why she's so fucking crazy.

I think you're going to be fine.
And I really hope for some drunk ...Voxes? that's totally a word.... in two weeks.
Seriously.

Nadine Nell said...

Ninja brings up a valid point.

We know what happens to someone that is an only child.

kids need another kid around to antagonize and teach them life lessons about sharing, revenge, lying, companionship, bribery, blackmail and family.

and for fuck's sake get rid of this "prove you're not a robot" crap. i never know what these words are.

Jaclyn said...

@Nadine- I am preemptively blaming things on the alcohol. And if there is a way to get rid of the robot thing, please tell me. Better yet, do it for me. You know this entire blog would be in a notebook somewhere if it weren't for the fact that you understand technology and shit.

@Helen- new readers give me a blog boner. Thanks for being sure I can kick some ass.

@Gia- boozeapalooza is the answer to everything.

@Jana- I know I don't always respond to comments, but for the record, I read them all and I love getting comments so very much. I would reply more if I had the time, but I mostly blog at work and I can't actually access my own blog because my job thinks its "porn". I guess I do say fuck a lot. But seriously, always comment. I heart comments so hard.

@Angie- Your words are always kind, even if you are trying not to be. I know you're here, understanding parts of me no one else does, and that means so much.

@Ninja- you really like to slap people, don't you? Crazy bitch. In any case, it's nice to get the perspective of an only child. And there will be all the drunken Voxes. And maybe I'll send you a picture of my boobs. I do that sometimes when I'm drunk. You're welcome in advance.

Misty said...

Oh damn, girl. Sorry to hear the diagnosis is MS. But with anything, you just have to face the ridiculousness of it, and own that son of a bitch. It will be a serious something in your life you have to deal with. Everyone has that. Not trying to minimize the suckitude of it, but also not tryign to dole out the pity.

I don't think having another child is a bad thing. Just because you have MS, you are not necessarily burdening another kid with it. You wanted another one anyway, and this shouldn't change that. You are an awesome mom and any kid will be lucky to have you as a mother. Baggage and all. You should meet my mom. Yikes. Everyone has their issues with their parents. You are just giving them ample ammunition for therapy is all!! :) Seriously though, do it if you feel you want to. Everyone needs a sibling. It is an inalienable right! What are you, un-American?? Damn commie.