Coming to terms with my truth.

I made myself an ultimatum on this blog about a month ago… have a song up here, recorded by the end of August, or shut up about being a musician.

I’m not going to have a new recorded song up here this month, and I’m not going to shut up about being a musician.

Why? Because I don’t have to prove anything to anyone but myself. I graduated from Berklee College of Music, so I have a solid musical background, and I practice music almost every day. I legitimately am a musician, but it’s not who I am as a person.

So as far as recording songs go, I’ll get to it when I am ready. I have already recorded an original song, back in February of 2006, cheesey as it was. I don’t need to push myself to some stress-addled crazy-making point. There’s a lot going on with me. I need to be systematic about it.

Am I ever going to be a rockstar? Probably not. And I’m okay with that. It doesn’t change the fact that I am a songwriter.

I’ve got to give myself small, achievable goals that I can pursue in a regular fashion, just like I do with practicing.

I mean, I sing, I play piano, I play guitar, I play drums and percussion, and I write. And I expect myself to put everything together on a computer completely alone. That’s a daunting task – and too often, I let it become overwhelming to me.

Making music is supposed to be fun. So when it’s not fun, or at the very least challenging in a good way, I don’t do it.

Will I ever have an album? Maybe. Am I gonna be hyping it on here? Not until it’s close to finished. Will you hear tracks along the way? You bet your ass.

Right now, my life is all about getting prepared to start a family, fostering kittens, playing with my dog, and doing web and graphic design for family and friends, all while managing MS and a seizure disorder. Music is part of it, just not the most important part.

A week and a day!

Sorry it’s been so long since my last update. I’ve been so busy! First, Tuesday of last week, I had my first experience volunteering outside of the house.

I went to the Uptown location of Treehouse Humane Society to try my hand at being a cat caregiver. I found out, however, that I am a better kitten foster-mother than I am a cat caregiver. I just don’t have the endurance for 4+ hours of laundry and cat socializing. Not only did I miss the bus there and have to take a cab, but my symptoms were flaring while I was there, and I had to leave a little early because I couldn’t handle the heat of the laundry area.

At first, I was really disappointed in myself for having to quit after my first round of volunteering with them, but at least I gave it a shot, which is more than nothing – and I’m still signed up to foster kittens, which is something I know I’m good at and that I enjoy. Treehouse does great work with cats, and I have a lot of respect for the volunteer caregivers who stick with it.

Later on in the week, I chose to use my time for another volunteer opportunity: working with the ovarian cancer foundation in Memphis by making some graphic badges for those folks who are participating in their walk for teal in September. It’s looking very likely that I might do some web design work for these folks too, which I’m looking forward to. It feels good to be making a positive difference in the world by doing some work that doesn’t involve cleaning.

And now, well, now I’m in Birmingham, AL with my parents while my hubby is out-of-town doing work for the rail! So life has been really whirlwind.

Tonight, Daddy and I are gonna make supper for Mom so that after a long day of work she doesn’t have to fix supper as well. I’m thinking of teaching him how to make our chili and sweet potatoes recipe, since it’s so easy and delicious.


So there’s this thing called a Gratitude Rampage that I do almost every day on Facebook. What you do is type “GRATITUDE RAMPAGE!!!!!” and then go for 10 minutes at least, commenting underneath it what you are grateful for.

Today, I’m going to do my Gratitude Rampage here on my blog to share with y’all.

Ready? Set? GRATITUDE RAMPAGE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Tuesday edition. 😉

  • I am grateful that my blog has readers!
  • I am grateful that you are willing to read what I am grateful for.
  • I am grateful for life itself!
  • I am grateful for today and all of its beauty.
  • I am grateful that today, my MS is not bothering me!
  • I am grateful for the opportunity today to work as a caregiver for cats at Treehouse Humane Society.
  • I am grateful for kitties!
  • I am grateful for the clothes
  • I am wearing, and the ones I have put away.
  • I am grateful that Brisco is, as usual, being a well-behaved, sweet and wonderful dog.
  • I am grateful for our messy kitchen that means that we have had good meals and are likely to have more.
  • I am grateful for the cereal that I had in the house this morning to eat for breakfast so I didn’t have to go to the grocery store to get sustenance this morning.
  • I am grateful for the company of good friends on Facebook and AIM.
  • I am grateful for my wonderful husband who brings out the best in me and always takes good care of me.
  • I am grateful for the relationship that I have with both sides of my family that makes me feel like I belong.
  • I am grateful for the talents that I have that were nurtured by good, patient teachers, who made me feel adept in many areas, like music and cooking.
  • I am grateful for the financial security that Adam’s hard work provides that allows me to sleep soundly at night instead of worrying constantly about where our next rent check or meal is going to come from.
  • I am grateful for the bus system in Chicago that’s going to get me to Treehouse today!
  • I am grateful for the books that I am reading that are going to help me not worry while I am on the bus.
  • I am grateful for the medications that are keeping me from having seizures.
  • I am grateful that I was born in this age. I’d have been dead long ago if I were born in an earlier era, just from medical complications.
  • I am grateful for all the sensations that I can still experience, knowing that MS can take any of them away at any moment.
  • And I am grateful for this exercise, which makes me mindful of all the wonderful things in life that I might otherwise take for granted.

Thank you for joining me for my Gratitude Rampage today. I hope you consider doing one of your own. They are very fun to do and they always bring happiness. There’s really nothing like counting your blessings to make you realize just how good your life really is. It even makes your chores look good.

I’m off to go pet kitties and do their laundry! MAKE IT A GREAT DAY, YOU FABULOUS PEOPLE, YOU!

And smile from the inside. It always shows. 😉

I’m Certifiable! :) No, really!

Happy Monday, party people! I hope you had a good weekend.

Today, so far, has been a good day. It’s been storming like the skies are angry at the ground this morning, but it’s all good inside this apartment.

I spent the morning catching up on all the Facebook madness that I missed over the weekend. I ended up buying a present for my sweet new nephew Alex from a very talented friend. I’m excitedly looking forward to getting a Lissa Lou original fashion for him. 🙂 I’m sure Laura and Tony will love a onesie with suspenders and bowtie for the little one. Who doesn’t love a fashionable baby boy? I mean, really!? 🙂 Bowties are cool.

Anyway: After spending far too long on the site that sucks time, I got down to business on taking care of making my personal life a little better and finally called CTA/Pace to get ADA certified. I stayed on hold 10 whole minutes, just to find out that I was in line for an answering machine. Let me tell you how excited I am about that. I’m wondering if I’ll ever get a call back. I certainly hope so. Otherwise, how am I supposed to become certified so that I can do Dial-A-Ride?

The process to become ADA Certified is seriously difficult. First you have to call 312/663-HELP (4357 voice) and get through so they can send you an application, then you have to complete an in-person interview where you have to bring the application and a picture of yourself along with info about your disability, and after that, you might have to complete a 45 minute bus ride so they have proof that you can’t ride the bus by yourself. I’m actually truly worried that even with MS and a seizure disorder that I might not be “disabled enough” for their standards when I can’t drive by myself and I regularly have seizures in the car. To be fair, I’m probably being a pessimist.

Still, it’s definitely worth getting certified because I’d much rather dial-a-ride weekly to get to Treehouse Humane Society than take an hour-long bus ride where I have to change buses. I have to go through a whole rigamarole to try to get reduced bus fare too… so tomorrow, I’ll be paying $5 for the privilege of volunteering. And that’s just to get there. I’m really hoping I don’t have a seizure on the bus, and that I get off at the right spot and don’t get lost. I’m trying really hard to be brave and adult about the whole thing.

Today, the only real work I have on my plate is to fold some clothes and clean the kitchen and living room, and that’s totally self-imposed. Whenever Adam and I spend any real time together in the apartment, with the open floor plan we have, it tends to look like some kind of plate-napkin-and-food bomb went off. Fortunately, I don’t hate cleaning. I like the feeling of empowerment that it gives me when I’m done. The hard part is just getting started, and that just takes the monumental effort of getting off my lazy tuchas.

Speaking of getting off my butt, I totally did that this weekend! We helped our friends the Fosketts move from their home in Aurora to a new one in Lisle on Saturday (though truly Adam did a lot more work than I did), and then on Sunday, Adam and I went for another Sunday “hike!” That’s 2 weekends in a row now! I’m really proud to say that I walked an entire half mile nonstop. My legs may have been jello at the end, but I did it! And so did Brisco! Poor pup was whooped at the end.

So things in life are looking up. I’m taking a lot of personal responsibility for how I feel and for how much of a life I do or don’t have. And I think that’s a good thing.

Something Familiar.

I sit at the computer desk of at my in-law’s place, and realize – this really isn’t the time or the place to make a blog entry. And yet, I must.

You see, we’ve started a tradition of seeing them and having dinner with them at least once a week. We make dinner together. Tonight, it’s our chili and sweet potatoes.

It makes me think of one of the really good parts of my childhood: Sunday afternoons.

Sunday afternoons, no matter what, we saw our grandparents. Daniel and I were very lucky in that: having both sets of grandparents living within 20 minutes of us as we grew up. I don’t know that either of us could have realized it as children. But Mom and Dad made sure that we got to know the folks we came from. And they made sure that we had a routine so that it felt natural to be around them, even when we didn’t see them every day. It’s a big part of how we learned what “I love you” meant.

It makes this current tradition feel very special to me, in that I’ve begun to build that same familiarity with my new …well, family. I only wish Adam had the same chance to do that with my folks. All things in time, I guess.

All I can think right now is, I moved up a rank… It’s my turn to sit in the “Mommy” role… and that kind of blows my mind. Because “Sundays in Worth” has already started. It won’t be stopping any time soon.

The Facebook/Seizure Trap

Oh Facebook, how I love you and how I loathe you… I have begun the (bad) habit of waking up and checking FB first thing in the morning. Next thing I know, it’s noon and not only have I not gotten anything done, but I haven’t taken my pills or eaten breakfast. This, boys and girls, is a problem.

Now, it’s not a problem that I have so many friends who keep me entertained and mentally active. No, that right there is a benefit! But the fact that I can get so distracted that the real world sort of “ceases to be” most certainly is a problem.

To combat the FB addiction, and to do more good in this life, I have chosen to volunteer hours at the Treehouse Humane Society. That will require me to get on a bus. All by myself. Like a real grownup. That means I’ll actually leave the apartment and get off of FB for hours at a time. So what if it’s an hour-long bus ride to the shelter? More time for audiobooks.

That, and there’s the bigger thing… I’m not letting my seizures scare me into staying home alone, sitting on the couch anymore.

Do I still have seizures? Yeah. Do I still have them daily? No. Almost every day? Sure – but they’re almost always at night, when I’m sleepy. And they’re almost always simple partial and not complex partial. And the ones that are complex have auras with them. I feel them coming on for almost 15 minutes, sometimes longer.

Bottom line: I’m tired of sitting on the couch all day, every day, and I’m finally doing something about it.

Awake and feeling able

I think I stopped making music regularly when I was still a student at Berklee College of Music.

I was too busy working on a business plan for a business that I was sure would change the entire landscape of the music industry — and I was too wrapped up both in my extra-curricular activities (being a disc jockey at several online radio stations, starting/participating in Greek life on campus) and being in a wildly dysfunctional romantic relationship to really give a crap about actually making music.

In fact, I remember a moment when one of my sisters from Phi Beta came in the room and shouted, “You guys, I just realized we’re only musicians when we’re in the process of making music!” and I thought to myself, “Wow, I guess I’m not much of a musician at all anymore.” I was in my 4th year of being a music business major.

But I’ll tell you something: with only 1 additional mg of Abilify in my system today, I have original music in my head and a desire to practice today and to write. And that is an awfully good feeling.

See, I forgot to order my 5mg Abilify refill on time, so I have to take what I have left of the 2mg’s – and that means taking 6mgs of Abilify til the 5mg refill shows up. Happy accident – but it lets me know something: I don’t “music” unless I’m happy.

More than that, though, I don’t really write anything – words or music unless I’m at least feeling “ok.” I have been procrastinating writing a couple of guest posts for a friend of mine, and I know that at least one of them will get written today too. It’s the first day that I’ve felt “able” in a while. I’m guessing that’s why they named the drug “Abilify.”

It’s become painfully obvious to me that I build artificial road blocks for myself to make it impossible for me to achieve a recording of a song. It “has” to be on a computer. It “has” to have background music. It “has” to be really good. That’s bullshit. I might just get on Skype and record me with a guitar + vocals. That’d get the job done. And it would be a start in the right direction.

In any event, know that music is coming.

In the meanwhile, enjoy a few videos from artists who are inspiring me lately. I’m in love with Marina and the Diamonds, Florence and the Machine, and Little Boots right now. I’ll give you a song from each of em.

I hope you have a wonderful Tuesday, full of magic and sparkle. And if it’s full of sameness and banality, don’t forget to breathe the spark of life into it by remembering what’s good about life. Gratitude will get you far.

Just another Friday

‘Sup, party people?!

Not much is happening here in the World O’ Rae. I’ve had a pretty good morning. The only thing going on with me is a little leg pain, and it’s really not enough to complain about – just enough to be a good reason to smoke if it gets much worse.

This morning’s been rather productive. I’ve already done dishes, cleaned the kitchen, made the car payment and changed our address with the car company. (Woo! I made it past the computers to a real live person!)

I’m looking forward to the weekend.

Tomorrow, I get to see my friend Elin, who I haven’t seen in over 10 years! We’re going to the gem show here in town, and then to lunch. It’ll be awesome to see her.

And then this Sunday, assuming we’re both well enough, Adam and I are going to go hiking. I used to hike almost every Sunday with Hike the Geek before my MS introduced seizures to the mix. I’ll be glad to take back that part of my life. If I can hike consistently for a month, I’m going to ask Reichart if I can add Chicago to the Hike the Geek page and be the Chicago leader.

Little by little, I’m starting to have a life again.

It’s kinda great. 🙂

Reporting In for Duty!

Yikes! I missed a couple of days! Didn’t mean to do that. Life’s been a bit hectic. Lemme catch you up. First Tuesday.

Fun and Frolic with the Tube that Honks

Bright and early Tuesday morning, I had an appointment with the Box that Knocks, The Tube that Honks, everybody’s favorite claustrophobia inducing device: The MRI machine. It was an 8 am appointment, so Adam and I left the house at 6:45 a.m. to fight traffic and make our way over to the University of Chicago.

Surprisingly enough, traffic wasn’t bad, so we made it a full 30 minutes early and were able to treat ourselves to breakfast at the hospital’s food court. Corned beef hash and scrambled eggs reminded me: don’t end up in the hospital. 🙂 Just kidding. It was good hospital food, but it was still hospital food.

Intake was easy and my appointment started on time, but once I was in the machine for 5 minutes or so, they pulled me out and asked me if I was certain I didn’t have a metal plate in my head.

“Um, last time I checked, I didn’t. You may want to ask Adam, he’s good at remembering things I don’t,” I jested. They actually asked if I was being serious.

The machine needed a reboot, they said, so I waited while they did that, and we tried it again. *HONK HONK HONK HONK Beeeeeeeeeep WHOOOOOONK* No good. Now the back computer needed a reboot. And again, no good!

Ah well, machines break. They said they’d call me later in the day or on another day when the machine was fixed to come back, and that’s just what happened.

I got a call around 2 in the afternoon, and we made up for me to come in after Adam got off of work. When we came back at 6 p.m., the scan went off without a hitch. I’m actually looking forward to seeing the new pictures of my brainmeats!

Clean, Clean… *shake, shake* Clean, clean, clean, clean, clean! *boogies down*

Yesterday, I transformed into The White Tornado of AwesomenessTM and made my kitchen behave.

See, we have this tiny galley kitchen that opens up into our living room, so you can see the entire mess, and if you, like, make a bowl of cereal in it, it looks like something exploded in there… so you can imagine what the room looked like after we had cooked 2 or 3 actual delicious meals in that room.

I spent my Wednesday taming that beast. And doing laundry.

There’s really something about waking up, seeing a horrible mess, and being able to take it down by the time that Adam comes home from work that is empowering to me. I mean, I dislike cleaning as much as the next person, but it does give you a feeling of control over your immediate surroundings.

One thing that I dislike immensely about having MS and seizure disorder is the lack of control that I often feel that I have over my own body. It often dictates what I can and cannot do — so when I can get an entire kitchen clean (including all the dishes and everything in it), and I can do all the laundry in the house on a particular day, I feel accomplished. I feel like I have really done my part in my marriage and that all the responsibility doesn’t fall to my husband. Also, when I can consistently keep the place nice, I feel more like I am prepared or at least on my way to being prepared to become a mother.

Rockin out on my Thursday

As for what I’m up to on this beautiful Thursday, I aim to tidy and keep things nice around the house, to fold the laundry that I did yesterday, write a guest blog for a friend of mine, practice some guitar, and take Brisco for a walk. I’m also going to either go out and get some “Get Well Soon” cards or make some myself because I have a couple of very loved family members who are in the hospital — my grandfather and my uncle — one in TN and one in FL.

I think this “homemaker” gig is starting to get to me, because I want to make them both caramel ribbon brownies to send in the mail, even though I know that’s not wise. “Oh, you’re not feeling well? Here’s a box of unhealthy yumminess.” If life were “fair,” sugar would be a miracle cure for any illness.

Ah well, into every life a little rain must fall. Hope it’s not falling on you today!

Don’t forget, if you need a pick-me-up, that there’s nothing better than a Gratitude Rampage! I’ll be posting mine on Facebook later today, like always. ❤

Make it a great day, readers! I know you can!

Monday, Monday…

Well, it’s been 2 full days without Lamictal now, and I’m starting to actually feel more like myself. I recognized myself in the mirror and I actually smiled this morning. Smiled, like I like myself!

Well if that’s not a step in the right direction, I don’t know what is.

Saturday, we went to the adoption fair at Petco, just like I said we were going to. Unfortunately, we found out that the kittens we were going to foster were a lot older than we are used to, so we had to back out. Brisco can hang with kittens that are 3-8 weeks old when we get them because he treats them like babies… but 18 week old kittens have another name. They’re called cats. I mean, they’re just shy of 6 months old and are basically full grown. They’re done with their socialization period, and Brisco is more likely to chase them down than to lick them and show them the ropes of life. We don’t need that kind of crazy in this house.

So, Adam and I are looking for other rescue organizations in the area and other kittens to foster.

Today, so far has been pretty decent. Coffee, a trip to Walgreens to pick up meds and some cereal, a little Sims 3, and some Facebook.

I wish I were going to Memphis to visit my Poppy, who is not feeling so well. My parents are off to Memphis to visit him and help him get healthier. They say he’s lost 45 pounds this year. I’d like to lose that much! I’d also like to be in Memphis cooking for the old man. I’m certain he wouldn’t say no to some of my lasagna, mac & cheese, or meatloaf. He liked it a lot when I cooked for him while we lived together. And I was working out 2-3 hours a day back then and was not so worried about being super-healthy with my foods.

I’m realizing more and more that I don’t feel like I know what is “healthy” anymore. I think that lean meats, vegetables, fruits, no processed foods, minimal sugar, and minimal grains is good. I think eating rice is okay because I don’t feel bad afterward. I also think I’m okay eating some dairy because I my allergy test didn’t say I was casein or gluten intolerant. I also think that working out more has to happen. I don’t think that just walking is cutting it.

I miss the days when I used to be a “gym person.” You know the type – the ones who go to the gym for at least 2 hours a day… the ones who know what machines do what and who have a routine for each day that changes… I wonder if it’s even realistic to think about being that way again. I know I used to overheat myself regularly and have problems hearing and feeling the bottoms of my feet. It’s probably not smart to go in that direction now that overheating means “having seizures.” But I really miss weightlifting, and know that it’s the fastest way for me to shed weight. At least for now I have Wii Fit and yoga, and really, no valid excuses at all.

This whole “having no excuses” thing is kind of a ballbuster! It’s forcing me to admit to myself that I’m badly overweight and not in a rock band or making music because I’m lazy and/or preoccupied with other things. What’s worse is the realization that I have come to accept these things about myself, when they are things that upset me and that I have the power to change relatively quickly. All I need to do is start working out and recording my practice sessions.

I know blog posts are supposed to have a point usually. This one is more like a diary entry more than anything else. Just another day going by in the life of your everyday, not-so-average MS & seizure disorder girl — fighting the good fight, so you don’t have to. 😉