Time For Some Changes

Time for some changes. Not huge changes, but significant ones. Tomorrow, I drop another 10 mg of Cymbalta and 25mg of Lamictal. I also am ending my on-again-off-again love affair with the Paleo Diet. Instead, I am creating a modified diet that works just for me. I’m calling it the Rachael Diet, because it is mine.

Yesterday, when I had to be weighed for my neurology appointment, the scales tipped at 200. I haven’t been 200 lbs since 2004. I worked my ass off to lose 70 pounds once, when the scales had hit 225, and I swore I would never see 200 again. Well, it’s happened, due to inactivity and fatty foods. (I wonder if part of the difference has been eating grain-fed meat instead of grass-fed meat, but because the cost of grass-fed meat is so high, I will likely never know.)

According to FitDay.com, if I want to be 135 (my goal weight) by my husband’s birthday next year, I need to restrict my calories to 1200/day. This means either that I can eat 1200 calories, or that I can eat more than that and exercise the rest of them off. 1200 is not a lot of calories, just for the record. Most people can consume that in a meal at McDonalds — but I remember being on a 1400 calorie diet for a long time, so I know that I can do this.

The diet is simple caloric restriction + the best of the paleo diet – removal of foods that cause inflammation. What I plan to do is combine being on a 1200-1400 calorie diet while also staying away from corn, peanuts, and other foods that give me problems or cause inflammation.

I’ve taken an allergy test, and I’m not allergic to anything. I’ve just noticed inflammation is worse with certain foods than with others, (for instance, I can have a few pieces of cheese – but feel like hell the day after too much pizza) so I am going to try to continue to eat as “cleanly” as possible. I’m still staying away from straight up sugar as much as possible.

I’ll keep you updated on my progress here. I’ll be exercising too.

Lamictal, for me, is lame.

So I’m coming off of Lamictal. I’ve been taking it for my seizure disorder, but it is causing me to have suicidal ideation and horrific depressed feelings, just like last time I took it, back in 2009.

This means I have to call Dr. R, my epileptologist, and see about getting on either a different seizure med for pregnancy or we might try a very low dose of Topamax, since it’s the only seizure med that seems to have any real efficacy for my seizures.

For those of you who are concerned about birth defects and whatnot with Topamax and our baby – we are being as careful as we can be, which is why we were trying to switch to Lamictal to begin with. The sorts of birth defects that are common with epilepsy medicines, like cleft palate, are usually 1% without seizure meds and are about 3% with seizure meds. Taking high amounts of folic acid and keeping up the Omega 3 fatty acids in your diet are supposed to help.

Right now, I’m trying my best not to feel disheartened and worried about what it takes to carry a child. I’ve already come down 20 mg of Cymbalta (from 90 mg to 70), and that’s a good start. I come down another 10 mg next week. I’m moving down 10 mg a month so that it doesn’t hurt too badly… which is why I’ll be down to no Cymbalta by February. Then comes the Nortriptyline, 10 mg a month, done in April, and I ought to be good to go, assuming that during that time, I’m also coming off of Topamax by a goodly amount. The less of the drug that is in my system, the better.

I haven’t written for the last couple of days because I have felt like there wasn’t really anything to say that was worth writing down. One moment, I’m okay, and the next moment, I’m in tears. Being on steroids for the MS relapse I’m having doesn’t help the mood swings one bit.

When I write on this blog, it’s my goal to share useful information that will somehow help people.

I don’t know if hearing about my struggles with medication help or not, but at least the people who care about me the most will know exactly what’s going on.

I crumpled down in a dark closet today, just like I used to when I was obsessed with killing myself, thinking that I am unworthy of carrying life, today, and that there is no way that I’ll be able to be a mother. It was when I mindfully realized that I was repeating that hateful, self-hate-filled pattern that I was able to let Adam in and we talked about how the steroids and Lamictal were affecting me.

If I hadn’t started meditating again, I might have thought that these emotions were real and that I really wanted to die again – like when I had been hospitalized, but I am happy overall. I love my life. I love my husband, and I want to expand our family. I am simply emotionally exhausted from the pain of MS (which is getting better thanks to the medrol pack that I’m on), the unexpected nature of the seizures that I have, and the isolation that I throw myself into when I think that I’m not performing up to the standards that I set for myself — especially when I set those standards arbitrarily and high.

I have an appointment tomorrow with my MS neurologist, Dr. J, and I’m hoping he’ll agree with me and Adam on our choice to take Lamictal out of the routine. I’d be surprised if he doesn’t.

I’ve also realized that my life seems kind of lame, in that “She just does housework” kind of way — but I am still practicing instruments and songwriting, and that’s not lame at all.

Making a career is just not at the forefront of my mind because my immediate health is sort of right in my face — and what I really want out of life is to be a good mother, and to teach my children, and to love my home and my husband and my family as best as I am able… I just want to be healthy and effective at bringing happiness to those I love. So right now, I’m a stay-at-home-mom with no children. I’m working on making the babies and getting better at life skills – some of which I’ve got down, and some of which, I need practice with.

At the end of the day, my life is totally focused on feeling better, making food, making house, making music, and making babies. And I know, without a doubt, that’s worth living for.

Just another day

Well, officially, I’m having an MS relapse.

My left big toe is keeps going back and forth between pins and needles and totally numb. Walking is tough. My whole body is aching like crazy, and I’ve been having tons more seizures than usual. (Actually, about what I was having before Topamax.)

Dr. J really impressed me today. I called and left a message at his office just before they opened, and he called around noon. It was only 2 p.m. before I had a medrol dose pack waiting for me at the pharmacy. I have an appointment with him on Monday.

I spent most of my morning on Facebook, and I honestly don’t know how I would have made it through the morning without all the love and support of my friends there.

Right now, I’m watching an episode of Extreme Makeover: Home Edition where a child committed suicide, and they’re making over the home of that child’s family, in part so they don’t have to continue living in the house where their family member killed himself.

I thank God every day that I wasn’t successful in my childhood suicide attempts, and that as an adult, I was given the psychiatric treatment that I so badly needed to help me get past that inaccurate desire. I never wanted to die. I always wanted to stop hurting and to communicate the level of my pain and frustration.

Please, please, please, talk lovingly with your children, and help remove them from situations where they are being consistently bullied. You may save a life.

I think the most important to teach, though, is how to not be a bully to yourself, also. I’ve been waiting more than a week to call the doctor, and there’s no good reason for that. Once a symptom sticks around for 3 days, it’s not a pseudoexacerbation. I’m just stubborn. I stick to things until I have to change, and that’s something I’d like to change about myself.

Earlier this week, a few friends on Facebook were talking about the importance of language in our inner monologue and I couldn’t help but be struck by that truth. “I will not be negative” and “I will be positive” are not the same. When you use “not” language, you force yourself to think of the very thing you’re trying to avoid. When you use positive language “I am/will be,” you are sending yourself a positive affirmation.

Everyone has an inner monologue, and yours can be your best friend or your worst enemy. Sometimes both! Mine’s kind of a bitch, and I would like her to be more friendly, so for the past year or so, I’ve been working on word choices. I no longer wake up to, “Get up, you lazy sack of crap.” I decided that I deserve more self-respect as a person. Now, I wake myself up to, “Rise and shine! Time to make the awesome!”

I decided I was tired of being a victim, and that I was, from that moment on, going to live my life as a creator – spending more time thinking my way through situations than worrying about what got me into them in the first place. I was going to empower myself, regardless of how dire the situation seemed.

Besides, living in the here-and-now is a lot more engaging than living in the past. And now that I’ve dealt with my past, the present is much easier to deal with.

Thank you for your time and attention.

I realized this afternoon that I’d forgotten that a blog is like a lover. It needs time and attention, not at my whim, but every day. I realize that by posting irregularly, I abandon my readers, and for that, I genuinely apologize.

I tend to forget that this blog is for more than just me… that it’s more than catharsis or a note to my imaginary friend.

See, I’ve been online so long that when I write my blog, I never imagine that anyone is going to see it aside from me, and maybe my mom if she has a minute. So, when I check my site views and see that this place has been visited more than 6000 times, it kind of blows my mind.

So, you’re here for me. I’m here for you.

To start things off, I want to thank you for your time and for your attention. I hope my blog helps you in some way. I’m never sure how it’s going to come out, but sometimes it’s better than others.

I write about my life, what I eat, the kinds of things I do, what it’s like to have MS and a seizure disorder because I hope it’ll help others with MS and/or seizure disorder feel less alone and feel more hopeful, and I hope it’ll help others who are healthy feel more empathy for those of us who aren’t.

Lately, I haven’t been connecting to my best self. I’ve been moving and setting up house. I’ve been unashamedly eating fried rice, beef chop suey, pepperoni pizza, and birthday cakes almost weekly. (July is brutal!!!) I feel gross and have gained an embarrassing amount of weight in a short amount of time.

Adam and I are looking at gyms right now. I have a “free” membership at the YMCA that’s a 15 min walk from our home through the SilverSneakers program, but we are both worried about me getting home after the workout. Right now, after about 20 minutes of walking, I start having problems seeing, and after 30, I start having seizures. So, there’s no telling how I’ll be after a workout.

See, it’s Uhthoff’s syndrome. Sometimes, when my body temperature rises (sometimes even half a degree), my MS symptoms start to show up. First my numb toes, then pain in my legs, then my eyes start to suck, then I have seizures. It’s awesome, let me tell you.

But I can’t keep being sedentary. I refuse to do that. My body shouldn’t deteriorate simply because I can’t heat up. There are swimming pools, at the very least, even if it’s scary to be in them w/ the seizure disorder. They have lifeguards for those situations. Anyone could have a seizure underwater. I’m just more aware of it, and I won’t be ruled by fear.

Anyway, I’ll be sure to let you know how it works out.

Tonight, Adam and I are going to work out a menu for ourselves for the week. We’re redoubling our efforts to eat Paleo because it leads to good things, like weight loss and less pain.

I’ll be sure to keep y’all posted with the things that we make that we haven’t seen anywhere else.

Hope you’re having a good day!

I’m an aunt again! :)

This weekend was so great, if for no other reason than that our family welcomed a new member into it.

Alexander James Majka was born on Friday, July 20th. Holding him, and watching Adam hold him let me know everything I needed to know about whether or not we’re going to have a child next year.

We definitely are going to try our best to do so. Seeing our beautiful nephew was inspiring, and let me know just how “worth it” it is to continue to remove the medicines that are helping me, so that I can bear children.

This weekend, Adam and I also spent a good amount of time alone at home. Adam cleaned up the study, got rid of a lot of boxes and put away many of our books. You can really tell a lot about each of us just by looking at the books we have.

One of the things that we did, on Adam’s suggestion, was to get new frames for my degrees. It’s kind of funny to me, seeing my high school, college, and law school degrees on the wall. I cried, thinking that they were worthless, until the Hollywood Reporter decided to come out with an article about the top 10 Entertainment Law Schools in the country, and Southwestern ranked #4 – just beneath Harvard.

I’m not sure how I’m going to use my education, but I know I will. Life works things out, and things happen for a reason, usually.

Today, I’m heading over to LA Fitness to see about a gym membership. I’ve been mean to my body with sedentary behavior for too long. Maybe they’ll even accept my silver sneakers gym benefit from Medicare. Here’s hoping!

I hope everyone has been doing well. Much love.

Thank goodness the pain doesn’t last!

Okay, for all the bitching and complaining I did in the last post, I’m doing okay now. Titrating down may be painful for a day or two, but that’s it.

I can handle a day or two of pain — especially in the name of expanding our family. That’s called having the courage of your convictions.

My psychiatrist and I have worked out a plan where I’m going to be coming down 10 mg a month, every month, until I’m off Cymbalta. And then, we go for the Nortriptyline. That means that 9 months from now (April 2013), I ought to be free of anti-depressants. By that time, I also ought to be fully on Lamictal and off of Topamax.

I guess Adam’s 2013 birthday present could be the ability to start trying for a child, if everything goes as planned. 🙂

Right now, I’m trying to get better at the day to day management of basic life skills: getting the dishes, the laundry, the shopping — all of it done for just me and Adam. I know things will get massively more difficult once a baby enters the picture.

This morning, I’ve got grocery shopping to do. Fortunately, I’m not feeling any auras, and my legs seem to be cooperating despite the fact that we broke Paleo all weekend.

Today, I’m determined to get right back on the wagon, to add more to the Paleo Compendium, and to meal plan for this week. Nothing good happens with food without some planning.

Anyway, I hope that everyone is having a very good Monday, and that you are all doing and feeling well! ❤

Just… ow.

Coming off of Cymbalta is painful. I just dropped another 10 mg, and it’s an all-over ache that makes me want to whimper.

Shit like this makes me question how much I want to have children. I get that it’s important to be healthy and to not be on medications that will harm the fetus, but part of me is like, “Is it worth what I’m putting myself through to have kids that are genetically mine?” I’m sure the answer is yes and that I’m just crabby from the pain today. It’s only day one and the change is really a minimal one.

And I’m sure there are those of you wondering, “What if her kids see this one day?” I think they’d probably think, “Wow, Mom went through a lot for us.” Because I am going through a lot and its a labor of love.

I have to say that it makes me angry. I hate multiple sclerosis so much. Most people can just get knocked up and not have to go through this kind of crap. It’s not fair. And I know. Life is not fair. But whatever. It’s just one more thing in this honors course for humanity. I have to really REALLY mean it if I want kids. Really. And I guess this is how I prove it… by enduring unbelievable fucking pain in small amounts of time, over and over again.

Right now, I’ve gone down from 90mg/day to 70mg. I have to completely get off of Cymbalta and Nortriptyline, both of which handle severe neuropathic pain for me. And I will be replacing that pain medication with… nothing. With love for my someday children.

Yeah, it sounds nuts to me too. I’m going to hurt all day long and do it in the name of being able to carry life. And I’m hoping that the paleo diet is going to be enough to block the kind of pain that requires not only an amount of Cymbalta that is above dosage recommendations, but also Nortriptyline and weed – with the hopes that with MS taking a vacation during pregnancy, I won’t hurt so bad for 9 months.

I already am looking longingly at adoption and wanting to stop this craziness. But I don’t think it seems like madness to anyone but me. Maybe it’s because no one else feels what I feel. Maybe I’m just not tough enough. Maybe I’m just not tough tonight. That’s far more likely.

Tough happens in moments. So a re-commitment to the paleo diet, and a stiff upper lip.

Chapter 58: Favorable Transformation

Whoever’s government is smothering, stuffy and melancholy —
(like a parent giving a child room to grow)
their citizens will be the most honest, genuine, and pure.

Whoever’s government examines, inquires, and observes their people —
(like a helicopter parent)
their citizens will be most needy.

Disaster! Good fortune actually relies upon it!
Good fortune! Disaster is quietly concealed in it.
Who knows its extreme polarity?

They lack principles also.
To recover principles, act weird and wonderful.
Be good again because of the Devil.

People are lost and confused,
yet their time is solid and enduring.

To be like a saint,
Be a “square” without cutting people off.
Be incorruptible without needing to injure others.
Be upright without needing to be fraud-proof.
Be bright without needing to be glorious.

Things are changing for the better.

My activity levels, for example. Every time I take the dog out, I walk 0.4 of a mile around the building. 3 times a day, and that’s 1.2 miles or 30 minutes of walking. I don’t even have to add in an exercise routine if I don’t want to. I’m already walking 30 minutes a day more than I was before we moved in here!

And then there’s the “doing stuff during the day.”

I used to consider myself a good wife if I at least did 1 load of laundry and 1 load of dishes. Laughable, I say. If I haven’t done 3-4 loads of laundry in a day, something’s up. The dirty laundry pile here seems neverending. Everything in a bag or box is being washed before being put away or donated to Goodwill.

Right now, I’m sitting here, waiting impatiently for FedEx to deliver our dining room table and chairs. I know they’re supposed to come today, so I’ve put off coloring my hair red and taking a much needed and deserved shower until they’re delivered or Adam gets home from work (whichever comes first).

As far as everything else goes, I had a really fun weekend. We celebrated Adam’s father’s birthday, and we attended a party in Indiana where fireworks are still very much legal. The after-the-4th celebration was amazing.

I have to say that I’m proud of myself for my conduct this weekend. I had a serious panic attack at the party when some of the paper from the firecrackers hit me in the face, right under my eye, and I went to the car wanting to leave — but after I took some of my anti-anxiety medication, I was able to rejoin the party and enjoy some really beautiful fireworks with some great people. I even had a seizure that night, and no one noticed (I don’t think) but Adam, because he was holding me.

So, I guess you could say that our social lives are improving too. 🙂 I even met a guy who composes who might be down for songwriting with me.

All in all, life couldn’t be better right now if I asked for it to be. I mean, a money fairy could always come by and drop some goodies down on us, my friends, and my family. I wouldn’t shy away from that. But you’ll never catch me complaining about my current situation.

I love the location of our new apartment. I love the family-owned meat and produce market that’s up the street. I love the shopping around here and the easy access to transportation. I love our apartment itself. I feel like my whole life got upgraded.


Howdy party people.

I know it’s been, like, a week since I last updated. Adam and I have moved from Romeoville to Chicago proper, and into our own apartment. No more living with family! It’s self-sufficiency, all the way!

So, let me tell you what the first big adjustment has been: lack of a couch. Fret not! Ours will be delivered on Friday, so really, we have 1 more day of waiting. And it’s not like we’ve been sitting on the floor. The camping chairs that I got as a prize for fundraising for walkMS 2008 have kept our fannies comfortable. I’m sure you were worried! I know I was. 😉 Comfort first! 😀

We’ve almost built all of the IKEA furniture we bought this past weekend too — we’re only down one dresser, and it’s the big one. I’m thinking about tackling it while Adam’s at work today. What? I’m handy when my fingers aren’t fuzzy!

So far, living in this apartment has been great. I’ve walked to Jewel-Osco twice to go grocery shopping on my own, Walgreens once. Walgreens is actually on the first floor of our building, so it’s crazy easy to get to, and it has damn near everything you could want for living. Jewel is slightly more of a trek, but when I say slightly, I mean just that. It’s maybe a tenth of a mile farther away. Heck, there’s even a Dollar Tree a block away in the other direction! If it weren’t hot and muggy, I would have absolutely nothing to consider kvetching about — and I’m not kvetching!

One thing I’ve really noticed while unpacking is that we managed to box up and keep a ton of our books (which we could easily have lived without), but we had to give away a lot of stuff we really liked and should have packed because we were so bad about packing up stuff on time when we were living in CA. The same thing is true of this move. We are still missing stuff that is at Nick’s house that we’ve got to pick up on Friday night. We are just not good at prioritizing what goes in boxes. But we ARE good at making organized heaps of stuff. 🙂

As the place comes together, I really am more and more pleased by it. This apartment is just as “adult” looking as our last place in Glendale. I’m already able to tell that I’ll be proud to have folks over and say, “This is my home.”

What really rocks, though, is that I’m truly able to take care of myself, so far. If I need to go get something, my legs have taken me where I need to go, reliably. If I want to carry something into another room – my arms have complied. Sure, I’ve been experiencing fatigue here and there, but that’s to be expected with this much stress and heat.

Hands down, I can call this move a success.