Monday, April 23, 2012

Back From the Brink

Did you miss me? Oh wait, what's that? You didn't even notice I was gone? (I'm discounting you, Ninja, since you are the best stalker ever). Well, I WAS gone. Very gone. Very, very gone, in fact.

I was in the mountains at a bad ass cabin with an indoor pool and hot tub. You know, because I'm fucking fancy. But you know what they take away when they give you a hot tub? CELL PHONE RECEPTION. And Wifi. I think we all had a mini panic attack when we realized we wouldn't be able to check Facebook for 5 whole days. You know what I realized though? I needed to not check Facebook for 5 days. I needed it so hard.

 As for the actual vacation, I had the best time ever. I relaxed. I napped. I hot-tubbed. I got drunk every single night (though, I'm kind of ashamed to admit that my tolerance for alcohol is practically non-existent at this point. When I say I got drunk, I mean I had 2-3 drinks every night). One of the most enjoyable things for me was not to be overscheduled. I'm usually that asshole on vacation who has every minute of every day planned down to the potty breaks. I could blame Caitlyn, because having a toddler does make it kind of necessary to plan poop breaks, but we've only really been on one vacation with her. I guess I'm just a planner when it comes to relaxation. Because everyone knows that (despite my usual tendency to be late for EVERYTHING) being a militant asshole if anyone (RODOLFO) throws off my plans, is the one true path to relaxation and enjoyment.

Anyway. There were a few activities. We went horseback riding. We visited some local caverns and took pictures of particularly phallic stalagmites. We swept up dead bugs (and really. That was an activity. There were so many dead bugs. And live bugs, for that matter. All the bugs. All of them). Mostly though, we hung out and drank and read books and ate barbecue.

I think I mentioned it in another post, but for the record, this was a vacation I took with a group of my friends. My husband and child stayed home. I bring it up now because I had a pretty shitty revelation on my way home. As I mentioned before, there was no cell phone reception at all. None. There was, however, a house phone. I could not even get a text out to Rodolfo because I have pauper phone company, T-Mobile. Nadine, however, has Verizon so I could at least send him a text with the house number to have him call me.

He did not call me. Well, that's not exactly true. He called me the first night. Then I received daily calls from our babysitter (who I later found out he questioned every day to be sure I didn't call her, because he was convinced I was lying about not having reception). On our way back home, I figured I'd call him when we stopped for lunch, but he called me before I had a chance and was pissed that I was within cell phone range and didn't immediately call him, despite his ignoring me for 4 days.

 So that's when I realized it. The thing I needed a vacation from the most. It wasn't Caitlyn or MS or house hunting or even work. It's him. He is the number one stress factor in my life. So I don't know (I also don't know how this post went from "fun vacation stuff" to "maybe my marriage sucks"). That's it I guess. Not really sure where to go from here.

Monday, April 9, 2012

I'm Going to Whine About Being Tired. You're Welcome.

I'm sure I've mentioned my upcoming vacation. T-minus 6 days, motherfuckers.

The thing about this vacation is that my husband and child are staying home. This is the "say goodbye to my 20s" vacation where I spend the week getting hammered with my friends.

Do you want to hear something pathetic, though? The things I'm looking forward to the most are things like sleeping in and reading books and shitting and showering in solitude. Because I haven't shit or showered in solitude since Caitlyn started walking. I'm looking forward to shaving my legs too, because, if I'm being honest, I shave my legs maybe once every 3 weeks now. I just don't have time to do it more than that, and anyone who knows me realizes that is long enough for me to look like a bear. Summer is coming, you guys, and my legs are unprepared.

I feel so old. A few years ago I would have been seriously looking forward to spending a lot of time really, really drunk. And I am looking forward to that. But, honestly, I'm more looking forward to being able to read more than one page of a book per day.

The point I think I'm trying to make here, is that I am burnt the fuck out. BURNT. OUT. I can usually handle the trials of being a parent, but all the shit that has been recently heaped on top of that has me basically crawling through this week like I'm in a desert and vacation is an oasis. I'm completely and utterly exhausted. Run down.

House hunting is killing me. And it's not just the physical part- not just the running around after work and every weekend, looking at houses that are inevitably NOT the house. It's the mental part too. The part where I feel like we won't ever find a house. The part where I fall desperately in love with a place only to find out there is some bank related issue that will make it nearly impossible for us to buy it. The part where I want to give up and live in my shitty one bedroom apartment forever.

The other thing that's been getting to me is the amount of time and effort it has taken me to coordinate the delivery of the medication I'll be starting after vacation. I swear it's taken no less than a dozen phone calls to get this shit to my house. And it's kind of bullshit to put that much effort into something you are dreading.

Oh. And did I mention that Caitlyn's birthday is in less than a month and I've done literally nothing to prepare for it? Literally nothing. Awesome.

So I dunno. That's it. I guess this vacation could not have been timed more perfectly. Ideally, I'll get home showered, shaved, and well-rested, and my husband will tell me he found us the perfect house.

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.