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.
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.
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.
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.
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.