Change is scary… but scary is good.

This year has been very important to me. I learned many lessons that I think will help me live a better life overall.

I learned about Automatic Negative Thoughts and how to challenge them. I learned about the importance of staying busy, even if it means doing things that I don’t particularly enjoy (like doing dishes or folding laundry). I was able to break my cycle of suicidal thinking, and I have learned that it is not only safe, but sometimes completely necessary to get out of the apartment and rely both on public transportation and my own direction sense.

If you don’t like something, change it. If you can’t change it, change your attitude.
-Maya Angelou

Since January, I have experienced far fewer seizures than I did during 2008-2012. When I finally stopped taking Cymbalta and Abilify in December (which was very difficult), I went from having 30+ seizures in a day to having them only when I’m dealing with a relapse or pseudoexacerbation of my MS.

At first blush, and in truth, this seemed like a wonderful thing… but it created a strange emptiness that was immediately filled with obsessive thoughts of my worthlessness and a desire to end my life. Don’t get me wrong, I’m not pining for seizures – but suddenly, I saw what my life had been for 4 years — primarily Facebooking and doing very little else, sitting on the couch — and often sleeping through days. I suddenly had a lot of free time where I wasn’t either shaking or needing to sleep. And that was a good thing.

Nowadays, I am able to be a mostly-effective housewife. I do dishes. I do laundry. I clean. I grocery shop. I cook. Having the ability to do these things has made me feel as though I am finally a productive member of this family, and not someone who simply needs to be cared for 24/7.

Thanks to working with a great therapist, I’m now able to say (and genuinely believe) that I am worthy of life and happiness simply because I am a unique human being, and there will never be another one of me in all of time and space. I no longer think that what I do for other people or how much money I earn is an appropriate test for how “good” a person I am.

For several months this year, I tried to get back into the working world with no success. I sent out at least 3-5 resumes a day, and I got 1 phone interview in 6 months. 1. I could blame the economy… I could blame the fact that it’s been 5 years since I had “real” work. I could blame this blog “outting” my MS status to the world…but at the end of the day, I really believe that things happen the way they need to, as opposed to the way that we want it. Adam’s job pays enough for us to live comfortably, without me needing to add the stress of work (and getting to and from work) into the equation. As a housewife, I’m able to make the act of coming home into something genuinely pleasant for Adam, and I appreciate that he values my efforts.

The changes in our life must come from the impossibility to live otherwise than according to the demands of our conscience not from our mental resolution to try a new form of life.
-Leo Tolstoy

One of the good things about my lack of employment is that I won’t have to worry about when to go on maternity leave. I don’t have a job dictating when Adam and I can start a family. Unfortunately, I am on a lot of medication… and none of those medications are pregnancy-friendly.

When I stopped taking Cymbalta and Abilify, it was for 2 reasons – 1.) because I wanted my Video EEG to be as accurate as possible and 2.) because I wanted to get pregnant. If I hadn’t wanted to have a baby, I might not have had the willpower to quit, and I’d still be having seizures multiple times per day. Wanting to be a mother has helped propel me to do things that have been very good for me.

Now that Adam and I are really serious about it, I’m looking at what else I have to quit, and I have to admit I’m a little scared.

I have to quit Gilenya and wait at least 2 months before even trying to get pregnant, or else it will negatively affect the fetus. …so no DMD slowing down my MS during the pregnancy. I also can’t take it after the baby is born if I want to breastfeed (which I do). Fortunately, MS is supposed to be better during pregnancy. I can only hope. I just received my Gilenya for January, so I am planning to stop taking it either at the end of this pack or the next.

The daily omeprazole that I take for GERD has a category C rating by the FDA. This rating means that it is not known whether a particular medication will cause harm to an unborn baby if the medication is taken during pregnancy. This also means that, if possible, other alternative therapies should be tried. So, I’ll be asking my doctor about finding a new drug. I really hope there’s something to help with GERD that is pregnancy-friendly. I also know that breastfeeding while on omeprazole is a no-no.

The nightly 50 mg of nortriptyline that I take for MS pain has not been formally assigned to a pregnancy category by the FDA. Limb reduction anomalies (meaning babies being born with short arms or legs) have been reported in humans exposed to nortriptyline, however, no firm association has been made. The prevailing wisdom is that nortriptyline should only be taken during pregnancy when there are no alternatives and benefit outweighs risk. …so I need to get off this too. I also know you can’t breastfeed on it. I’m not sure how I’m going to manage the sometimes intense pain that I have in my legs and back without this, but I’m willing to hurt if it means that our baby will be healthy.

Then there are my hypertension medications – Hydrocholrathiazide and Amlodipine. Hydrochlorothiazide is considered category B by the FDA (same as Tylenol). Retrospective reviews of data have shown an increased risk of malformations associated with thiazide diuretics, so the drug should be used during pregnancy only if clearly needed. Amlodipine has been assigned to pregnancy category C by the FDA and should only be given during pregnancy when benefit outweighs risk. This means that I need to stop taking both of these medications, but I still must have my hypertension in check if the pregnancy is going to go well.

I am trying, right now, to get my blood pressure under control through diet and exercise. That’s a big part of why Adam and I are doing a Whole30 in January and are committing to 45 minutes of daily exercise. Science suggests that by eating less than 2000 mg of sodium a day and increasing my physical activity to 45 minutes of cardio at least 4 times a week, I should be able to conquer my hypertension. My cardiologist wants me to try to aim for 1500 mg if I can. I’m going to do my best.

And then, lastly, and most obviously, there’s my birth control pill. I think I’m most excited (and least afraid) about quitting this. I’ve been on hormonal birth control since I started getting ovarian cysts when I was 12… so it’s been 20 years. It feels like time. I am not, however, going to stop taking it until after I’ve already been off of Gilenya for 2 full months. I’m 2 weeks away from the end of my current 3 month pack, so I figure I’ll get it refilled one more time, and we can start trying in April, if everything goes as planned.

For everyone playing along at home, that means that at the absolute earliest we’d be due in January or February of next year, which feels like forever, even though it’s only a year out. To be really honest, I don’t expect to get pregnant in our first month or two of trying. Thinking this way is the only way I can convince myself that I’m on a good schedule and that I won’t be due during the coldest months of the year. However, since God has a totally sick sense of humor, I’m fully expecting that I’ll be due in late August or early September, in 100+ degree weather. I’m praying for a due date in October or June. I’m pretty sure those are the only 2 months that are genuinely nice in Chicago. Then again, I’m also pretty sure that the baby won’t care what it’s like outside, and it’ll come when it comes.

Sometimes if you want to see a change for the better, you have to take things into your own hands.
-Clint Eastwood

Aside from taking a disease modifying drug to slow progression, there’s not a whole lot that a person with MS can do to improve their physical condition. Sure, exercise is good, and it definitely helps with dealing with muscle spasms and weakness, but it won’t slow down progression. The same is true of diet. For several months in 2011, and a few months here-and-there since, I kept a paleo diet in an effort to reduce inflammation in my body and to be healthier. In early 2011, I was without Copaxone and was trying to manage the disease through diet. I found out that the paleo diet doesn’t stop progression either, but it did help me lose weight and have less pain.

Because of this, Adam and I have made the commitment to a January Whole30 and 45 minutes of daily exercise in an effort to both jump-start our fitness and to help prepare me for coming off of all of these medications.

The secret to making it through a Whole30 is good planning. I’ve created a 30 day meal plan to help us (and others) have a successful month. It’s not 100% finished yet. I still need to add a few meals to the last week. I’ve also left lunches open because I figure that we’ll either have leftovers or a salad of some sort. I’m not sure when we’ll have leftovers and when we won’t, or whether I’ll eat the leftovers for lunch or Adam will, so I didn’t add anything there. The emptiness is intentional — a feature, not a bug! 🙂 I also left off dessert/snacks because I figure everyone who is doing a Whole30 knows that they can have fresh fruit or veggies whenever they want them. I thought the plan needed some wiggle room for spur-of-the-moment personal desires.

As for working out, I’ve been dividing my cardio time among the elliptical trainer, the stationary bike, and walking on the treadmill. I’m not sure if we’re planning to weight train during January as well. That’s kind of up in the air at the moment. I’m also hoping to add swimming to the mix.

When I finish with the meal plan, I’m going to create weekly grocery lists, and I’ll share those here too.

The most difficult thing is the decision to act, the rest is merely tenacity. The fears are paper tigers. You can do anything you decide to do. You can act to change and control your life; and the procedure, the process is its own reward.
-Amelia Earhart

When I think about the life I’ve lived so far, the best and most important things I’ve ever done have made me truly afraid. And rather than the acts themselves, it was the experience of conquering the fear that made me feel truly alive. I remember a time when I couldn’t sing in front of people without throwing up afterwards. I remember when I was terrified of living in an apartment by myself. I remember how scared I was the first time I drove a car… So, when I think about actually giving birth, and the earnest thought alone gives me goosebumps and makes me queasy, I’m pretty sure that means it’s going to be one of the most important things I will do in this life.

And every step towards it is another opportunity to kick fear’s ass.

Thinking too much.

…about health.

I was sick for almost 3 full weeks with something flu-like, and every idea I had for a blog article involved an inordinate amount of whiny complaining. I don’t like to give negative thoughts more power than they deserve, and when I write, I feel like I’m giving power to the ideas that are embodied in my words.

Instead, I’ve been meditating and focusing on the positive. I’ve been doing my best to keep posting 3 Great Things About Yesterday every day on Facebook. Remembering 3 good things about yesterday is one way you can rewire your brain for happiness. It helps you focus on the good instead of the bad.

Be that as it may, none of us can escape the fact that bad things, do, in fact, happen… and sometimes more often than we like. Like seizures.

I almost feel like complaining about the fact that I have seizures when I’m sick is a form of being ungrateful at this point. 2 years ago, I was having 20+ seizures a day. Nowadays, when I’m sick, I still have them… but at my worst, I think I may have had 10 on one day. On days when I’m not fighting off an infection, I get to pretend I don’t have a disorder. I like snapping back into denial. It makes me feel safer than I really am.

…about what other people think.

I’ve been spending/wasting a lot of time on Facebook, and it really has gotten me thinking about how many things people get themselves worked up over. I have many thoughtful friends who are passionate about their perception of what justice is. They fight online, trying to convince others about their rightness in regards to whatever horrible thing Gawker has thrown at them that day.

I’ve gotten really tired of it. I used to fight the good fight right alongside them, and try to change people’s minds about political bullshit, but at the end of the day, I was angry and they still thought whatever position they were defending was correct. I came to the realization that we’re all thinking too much about what someone else is thinking.

Arguing about racism and privilege in the context of celebrities is a sad waste of time and emotion.

I saw people absolutely lose their fool minds over the fact that Miley Cyrus play-spanked one of her dancers, who happened to be black. during the performance. Folks were actually trying to convince me that it meant that Miley is pushing forward a racist agenda, fueled by white privilege. My thoughts were that she was selling sex during a song about sex, and if all they saw was a white person striking a black person, they were the ones who were racist… because why shouldn’t a black girl and a white girl get freaky with each other?

I actually lost multiple friends over this idiocy. My thought is that if they want to end a relationship with me because I refused to adopt their opinion, they’re not the kind of folks I want in my life anyway.

This week, it’s all a big hullabaloo over the comments of the oldest guy on Duck Dynasty about sexual preference. It reminds me of the Paula Deen debacle. I’m just sitting here, thinking “Holy crap, an old person from the deep South has aired an unpopular opinion? NO WAY. That’s a first.”

Why do people even care what these people say? Everyone’s allowed to have opinions. We don’t have to like them. What good is it to try to force our own opinions on others? It shouldn’t be world wide news (or even a surprise) that an old, straight, Christian redneck man doesn’t understand what it feels like to be gay.

I just see folks, over and over again, getting themselves truly worked up over things that don’t actually affect them personally. Recently, it’s even been over the tweets of some no-name PR person. It makes me sad for them that someone else’s crap has become theirs. And it makes me want to find a better way to spend my time.

…about practicing my instruments.

I recently was gifted Rocksmith 2014 for my birthday. I now have a game that will help me learn to play guitar better… but I keep putting off playing it because I’m too busy thinking about how hard it will be. UGH, I have to move the couch and sit on a chair. I have to actually think. This might not be easy. WAAAH.

I’m not any better about the piano, either. OH NOES, I have to move the couch in the other direction. And I’ll probably sound bad for a while. *hand-to-forehead* I CAN’T HANDLE IT! Too much pressure. Brain aneurysm.


I’ve been really worried about my hypertension recently. (If that’s not self-perpetuating, I don’t know what is.) My cardiologist asked me to stop doing the paleo diet and to switch to the DASH diet. It’s supposedly simple, but I keep freaking out about it. I worry that I’m eating more calories than I’m supposed to. I worry about eating the way that the plan wants you to. I food journal and then think, “Did I eat the right amount of everything?” The answer is always “No.” At least I’m more cognizant of my sodium intake now. *shrugs* Baby steps, I guess.

I’m also overthinking my novel and my blog. I constantly question whether what I’ve got to say has any merit or is worthy of publication. Hence the full month with nothing written here…

Thinking too much gets in the way of actually living. At some point, you’ve gotta just do something. Dreading doing the dishes? End your misery by doing them. It’s the only way.

I wish it were as easy to take my own advice when they’re not words in front of my face.