Tag Archives: music

And today I’m fine. (So far.)

Posted in Just Life., Uncategorized by

MS is so weird. One day, I’m damn near immobilized by fatigue and seizures, and the next, I’m feeling great and am having a genuine debate as to whether it’s smarter for me to blog or fold and put away ALL. THE. THINGS. (It can’t be some of the laundry. That’s just not enough. I’m adulting so hard today!)

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Happiness > Folded Laundry

Of course, since you’re reading this, you know what choice I’ve made. Surely, I’ll make a dent in the mountain of clean laundry at some point today, but I felt like writing was a better use of the short time that I have while Henry naps.  Why?  Because writing is one thing that makes me genuinely happy, even if I’m writing about tough stuff… and if I don’t do simple things that make me happy, I have no one to blame but myself.

I think that’s one of the hardest things about being a SAHP (Stay-At-Home Parent, for the uninitiated). It’s way too easy to spend the entire day focusing on your child’s needs and housekeeping and to completely neglect yourself.

If you can sing every jingle from every Daniel Tiger episode, but you haven’t listened to a new release from one of your favorite artists that was released almost a year ago (like this one for me), you just might have your priorities slightly out of whack. (And that’s ok.  Friends help each other. Yes, they do. It’s true!)

If you don’t carve out time for things that make you smile, you can become overwhelmed and sad so easily. Heck, when I first started this gig, I had to set alarms to remind myself to eat (Ok, I’ll be honest. I still use those alarms.) and take showers. (More than 1 a week! It’s important!)

After going back to therapy, this time for postpartum depression, I realized something: I’m doing a fantastic job of challenging automatic negative thoughts… but I’m doing a crap job of giving myself credit for the things I do and an even worse job of having fun.

A thought really struck me hard the other day — Henry is learning how to be a person from watching me.  If I don’t do things that make me happy, I’m teaching him (by example) how to be miserable. We can’t have that. I refuse.

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So, I’m gonna keep doing my best to show him that you rest when you feel bad, and you do whatever you can when you’re feeling well.

On that note, I’ll be busting out the guitar this week…finally bringing it out of retirement. It’s been almost a year and a half now since I played. (Baby belly bumps get in the way!)  I’m not expecting that it’ll sound particularly good — but something is so much better than nothing. I’ve been thinking about it for weeks now, and I think he’s finally at an age where I could play it and he wouldn’t automatically try to wrestle it away from me.

Truth be told, I miss parts of my identity from before I became a mommy… from before MS made my life wonky… from before I stopped thinking that I could be and do anything I wanted to do be and do. It’s time for that thinking to end. My mindset is in my control. Self-empowerment is about owning your bullshit and choosing to powerfully move past it.  You can’t be proud of yourself and be mired in self-pity at the same time.

How do you kick self-pity’s ass?  Gratitude and credit.

The Sticker List

Y’all have heard me talk about how important Gratitude Rampages are, and how you can rewire your brain to be more positive by writing down 3 great things that happened yesterday, every day.  Well, we can add another exercise — one that I made up myself that is helping me out loads.  The Sticker List.

What’s “The Sticker List?”  It’s a simple list of everything that you believe you deserve a sticker for.  See, we give kids stickers (or other little treats) when they behave well, in an effort to give them positive feedback and attention so that they will develop good habits. Some kids gets stickers for using the potty. Others get them for brushing their teeth or doing basic chores.

Today, I believe I deserve a sticker because I’ve chosen to write… and I think I probably also deserve a sticker for:

  • changing 3 poopy diapers before noon
  • remembering to take all of my morning meds
  • eating within an hour of waking up
  • not being ashamed of sharing this. 🙂

It’s like a to-do list in reverse… a “Done” list, if you will.

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This would be the sticker I would give myself for changing diapers. Have you ever seen such a happy crap?

And, now that I’ve shared this, I actually want to go fold clothes. (Who am I becoming?!?)

Hope you’re all having a wonderful day. ❤

 

Celebrations

Posted in Just Life. by

It’s been quite a Decemberween so far!

danandjeninlove

Mr. & Mrs. Boych

Daniel turned 32 on the second night of Chanukkah. He and Jen got married in beautiful Tamarindo, Costa Rica on the 4th night. It was great to spend almost a week in a tropical paradise at a swanky resort with my family.

MomandDadatDanielswedding

Proud parents

I missed Adam and Henry terribly, but absence truly did make the heart grow fonder. I came back to a husband who appreciates my work at home even more than he used to, and I haven’t been nearly as grouchy about Henry’s shenanigans since I got home. (Truthfully, though, I’m still not a fan of diaper rodeo.)

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I actually missed the kid so much I was looking at baby food at the market.

Nick (my brother-in-law) & I turned 35 yesterday, and we celebrated on Saturday by having free birthday dinner entrees and desserts at Houlihan’s and checking out the closest hole-in-the-wall karaoke bar near my home with Adam & Lizzie (Nick’s girlfriend). I got a free apple pie shot from the bartender and had the chance to sing “Biscuits” to a crowd that appreciated it. Couldn’t have asked for a better time.

I’m not sure what it is about turning 35 that made me ever so slightly melancholy. Honestly, I’m completely stoked that I’m still around. Every year that I make it around the sun again is a victory.

I think that there’s just some sort of arbitrary checklist in my mind that activates when I have a birthday… like some sort of silly, shitty, self-imposed performance review — as though there are metrics to hit. I’ve decided that, while I’m disappointed that I can’t always get everything done, I’ve handled my promotion to “mommy” with aplomb, and I am deserving of a bonus.

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For my Decemberween gift (aka birthday/chanukkah/christmas all rolled into one), Adam has said that I can do whatever I want to do in order to get back into shape.  He says he wants me to look at myself and feel as beautiful as he thinks I am every time he looks at me. My favorite thing about my husband is that he always wants to support me in being the best version of myself possible. 🙂 I feel very lucky to have him in my life.

Truth be told, the last time I felt genuinely beautiful was before I was diagnosed with MS.  I lost 75 pounds before I started law school and was working out every day. Fitness (and by extension, confidence) was one of the biggest things that seizure disorder took from me, and I’m looking forward to reclaiming it.

So, I’ve decided to take a 2 pronged approach and to both work with a personal trainer and go to BodyLogicMD to get my hormones checked out and balanced. I am convinced that I either have a thyroid issue or leptin resistance.  Regardless of changes in diet and exercise over the last several years (and there was a whole year when I did weightlifting 3 times a week and was 80/20 paleo), I saw no change in weight, so I’ve decided to find out why and do something about it.

Apparently, that’s what a grown-up romantic present looks like… lots of trips to the doctor and the gym. *lol*

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Thursday night, we head over to the in-laws to celebrate Christmas Eve. I’m looking forward to it to the point that I didn’t buy any wine — just a lot of good food and some energy drinks. Without them, I’d never be able to keep up with the kiddos.

All that, and I’ve even sent out holiday cards on time this year! I knew it could happen! 🙂

Hope that you and yours are enjoying the holiday season, whatever holiday you’re celebrating.

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Mostly Better

Posted in Just Life., Multiple Sclerosis, Seizure Disorder by

It’s been a week. My last entry happened on a day when I had more than 20 seizures. I’ve learned that if I’m that incapacitated by seizures, I’m definitely having an MS relapse. I called my neurologist to follow up, and he called in a medrol dose pack on Friday afternoon. The effect was damn near instant. Thursday: 20+ seizures, Friday prior to meds: 13 seizures (I took the first day’s worth after dinner), Saturday: 0 seizures. NONE. Not one.

I wish I could say that I haven’t had any since Saturday, but that wouldn’t be true. Yesterday I had a couple, but they were simple partials (facial twitches), so I’m not worried about them. I’ve come to the point in my experience having seizure disorder where 1-2 simple partial seizures a day doesn’t feel like any big deal to me at all. Today, so far, I’m good. Maybe that means that tomorrow I can get back to the gym. I’d really like that.

Doing The Right Thing

Sometimes, I do the right thing without even realizing that I’m doing it. It always makes me smile when that happens. Take that letter that I wrote myself last week, for example. Apparently, science has proven that writing yourself compassionate letters is good for your mental health. It stops you from ruminating on the negative and allows you to take positive action. (Like taking a much-needed nap!)

Today, I’m doing my best not to ruminate on an irrational concept that a friend brought up in reference to herself. She said that she didn’t want to live a mediocre life.

A Mediocre Life? There’s No Such Thing.

For whatever reason, reading the phrase “living a mediocre life” felt like a punch in the chest. The idea that I might be living what she considered to be a mediocre life stuck in my craw. What upset me worse was the idea that I might think that I’m living a mediocre life.

I mean, I spend most of my days alone in an apartment, doing household chores and participating on social media.  It’s not exactly the stuff of legend.  Back in the day, before seizures, I used to be much more social and was very career-driven. But does a change from that way of being mean that my life is second-rate or ordinary? Since when has anything about me been ordinary?

Truth be told, I spent a significant amount of time in therapy wrestling with the question of why I’m even alive, if I’m not doing anything important. The answer to that question was remarkably simple: Because it’s better than the alternative! And, besides, how am I supposed to accurately know what is or isn’t “important” in the grand scheme of Life, The Universe, and Everything? That requires a level of objectivity that no human can possibly attain.

So, sure, I’m not living life the way that I had hoped for myself. So what? What person living with a chronic illness is? Hell, I’d go so far as to wager that no one is! We all deal with shit being thrown at us that we neither expected nor wanted, and we deal with it. Does living a life that is different from the one “of my dreams” mean that my life is inferior, insignificant, or of poor quality?  No, it doesn’t.

Just Because You’re Not Living The Life Of Your Dreams Doesn’t Mean You’re Not Living Well.

There’s so much pressure in our society to stand out and be considered important, and it’s totally unnecessary. It comes from our constant consumption of narratives: TV shows and movies and books. And most of these narratives are fictitious. In real life, we’re each the protagonist of our own story, but none of us knows the whole story because it’s constantly unfolding before us.

Hell, the US military even capitalized on this idea by asking the question, “If your life was a story, would anybody read it?” in recruitment ads. It’s such a silly way of thinking. Comparing stories from our lives with other people’s stories based on entertainment value is fruitless. It’s a directive for misery. There will always be people who have it better and those who have it worse. There will always be people achieving more and those who aspire to far less.

I mean, let’s take a step back from the question of “Is my life mediocre?” and ask an even more important question: who’s judging? Society? The media? History? Why should I care what anyone (other than me) thinks of my life? I’m the one living it, and I’m proud of who I am. That’s what studying Tao is all about: the idea that your path is unique to you, and that you can’t do life wrong.

If we must put ourselves up for judgment, I think it’s better to focus on a set of objective metrics.

  1. Do you do something to learn and grow as a person every day?
  2. Do you engage in activities that contribute positively to your community, such as philanthropy, charity, or advocacy?
  3. Do you treat yourself and others with kindness, compassion, and respect?
  4. Do you make an effort to use your unique talents when you’re able to?
  5. Do you take time to express gratitude and to appreciate the people and things in your life?
  6. Do you share your knowledge with others? Everybody knows something you don’t! It’s one of humanity’s greatest gifts!
  7. Do you make an effort to be empathetic and honor the experiences of others?

I think that if you can say “yes” to those questions, then you’re living a life you can be proud of.  And to be honest, even if you can’t answer “yes” to all of them, it doesn’t mean that your life is mediocre.
 

Shake It Off

Today’s earbug is a pop song by Taylor Swift. I usually don’t like her music, but I’ve had this song stuck in my head for a few days, and it works with the theme of today’s post. I hope it makes you want to shake your booty too.

Life and things.

Posted in Just Life., Music, Seizure Disorder by

It seems like every time I start to do daily updates, something happens that knocks me off my game within a week. Don’t worry — no promises this time about being “better” or any of that garbage. I’m just gonna keep writing when it feels right and I have time. I figure y’all will appreciate quality over quantity.

The Great Housing Hunt of 2014 Continues.

nohouseSo, first thing to update you on – the house. We got to experience deja vu! A bidder came in with a cash offer, and we lost the property again. Adam and I actually have a bet going as to whether or not this bidder will pull out just like the last one did when they realize that the property has 2 PINs and thus has double the taxes they were expecting to pay. We figure we’ll just keep looking. If it comes back up, cool. If not, whatever.

In the meantime, I’m just enjoying our apartment and am doing my best to take advantage of its perks, like proximity to certain friends, easy bus access to get pretty much wherever I want to go, and having a Walgreens and 2 good grocery stores close enough that we can get to them with fewer than 5 minutes of walking.

Shaken, not Stirred

Every time I see "seize the day," all I think about is crossing out the word "the" and replacing it with the word "all."

Every time I see “seize the day,” all I think is about crossing out the word “the” and replacing it with the word “all.”

As for my health, things are super annoying right now. I miss being on birth control and having my hormones balanced by them. I’m having a ton more seizures than I used to, but it’s not an every day thing… just most days. And truthfully, it’s not something that lasts the whole day either. I’m just back to having to really question my ok-ness before I do things.

Fortunately, despite having seizures in the morning, I was able to visit with friends on Saturday night who had just had their second child earlier in the week. I didn’t want to go over to their house if I was seizing because I wanted the opportunity to actually hold their son and not have everyone worry. That’s actually why we waited until Saturday instead of visiting them on Friday night.

There’s a sort of inexplicable joy that comes from the knowledge that I can hold a kid without them being in danger. Truthfully, one of my bigger fears about becoming a mother has been whether or not my kids will be safe with me. I’m incredibly glad that I’ve learned when I need to put on a cold pack or lie down. It’s an important bit of knowledge to have.

She’s c-cold as ice.

cool58vestSpeaking of cold packs, I’ve finally made a decision as to what cooling vest I’m gonna buy. I’m ordering the Cool58 Secrets Vest. I decided on it because it’s supposed to keep you cool for 2-3 hours and the cold packs it uses don’t require a freezer to reactivate. This means, if I’m out for more than 3 hours and need to get them cold again, I can put them in cold water and they’ll be good to go again. I also was happy to see that you can purchase the Cool58 packs without a vest, which means if I end up wanting to create a different vest design later, I can still use the same cold packs.

And now, for a bit of the Awesome.

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3 Great Things About Yesterday

  1. Tried a Rainbow Cone for the first time.
  2. Got the first Dirk Gently book. Life is always better with a little Douglas Adams in it.
  3. Enjoyed the 3rd to last new TrueBlood episode ever.

Daily Cute

Can any species defy the affection of a baby kitten? I don’t think so.

Everyday Earbug
Today’s video makes me smile on a personal level, not just because it makes me want to shake my booty, but because they have a sorority in it called “Electro Phi Beta.” For those of you not in-the-know, when I was in college, I founded the Beta Zeta chapter of Phi Beta Fraternity at Berklee College of Music. I’m not sure if the chapter is still active. Sadly, I don’t think it is, but it tickles me to think of all the amazing women I’ve met through Phi Beta who fit this song. I also am amused by the idea of using a lightning bolt as a Greek letter.

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I wonder if that means folks with HIV get osteoperosis less frequently…

Posted in Multiple Sclerosis, Music, Science by

Folks with HIV get MS less frequently than average folks.

hivScientists from the Albion Centre at the Prince of Wales Hospital in Sydney, Australia have found that patients with HIV are 62% less likely to develop MS, compared with control patients. It doesn’t end there, though — it appears that the longer someone has been diagnosed with HIV, the lower their risk of MS. This finding has scientists excited about the possibility of treating MS with antiretroviral therapy that is currently in use for patients with HIV.

There are a few reasons that people with HIV might be more resistant to developing MS. The first is pretty obvious: HIV destroys your immune system. Your immune system can’t very well get on with the job of destroying your nervous system if it’s being eradicated. Suppression of the immune system is one of the primary functions of many current treatments for MS, such as Gilenya and Tecfidera.

The second reason is less obvious. There is a theory out there that multiple sclerosis may be triggered by infectious or viral agents, such as the Epstein-Barr virus or herpesvirus 6. If this theory is accurate, it completely makes sense that antiretroviral therapy would have a positive effect on the course of the disease.

Watch out for Osteoperosis!

osteoporosisAlso in MS news today is the finding that folks with MS end up with osteoperosis more frequently than folks who don’t have MS. This makes sense, since both diseases share risk factors (age, history, family history, race, gender, inactivity, low vitamin D levels, smoking), and steroid treatments for MS negatively affect bone density.

What can you do, if you have MS, to help avoid osteoperosis? Increase calcium and vitamin D intake, avoid smoking and excessive alcohol intake, and regularly exercise.

And now, time for some Awesome.

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Three Great Things About Yesterday

  1. Had 4 seizures while on the treadmill at the gym – kept walking through all of them. Adam said, when he caught me at #4 (The others were simple partial facial seizures.) that he thought it was hilarious that I was still walking. I just kept thinking over and over again “Just keep going.”  Well, sometimes you can’t… but having someone there to catch you is great.
  2. Got to wear my new, pretty, purple cross-trainers. Yay for shoes that make me smile!
  3. Sushi for lunch.

 

Daily Cute

The chirps slay me!

 

Everyday Earbug

Every Monday Deserves Corgis.

Posted in Just Life. by

Happy Monday!

mondaycorgiToday, I’m trying my best to have a good day and to stop thinking about the fact that today we should hear back from the bank about the house.

Obsessing doesn’t help anything. We either have it or we don’t. Still, the truth is that I’m both excited and scared. Homeownership is both super cool and potentially difficult. I keep thinking about how we’d set the place up, where our furniture would go, and what work we need to do on it… I both keep thinking about how great it’ll be to have our own place with enough rooms that we could have 3 kids and still be comfortable and how incredibly worried I am that we somehow won’t be able to afford it — even though I did the math and know for absolutely certain that it’s in our price range. The fear is totally irrational but intense.

Truth be told, I’ve gotten very comfortable at our current apartment. I like where we live. It’s big enough to not feel cooped-up when you stay there for days on end and small enough that it’s easy to keep clean. I know how to get around here, and I like the gym we go to. All of that might be changing. I honestly think I’m more afraid of the change than anything.

I Want The Crown!

Tomorrow, I have a rare double-neurologist visit. I’m seeing both my MS specialist and seizure doctor at the same time. Usually, I would be excited by this, but I have been lucky — nothing’s really been out of the ordinary for me, recently. I am aware, however, that my “ordinary” is anything but. I know it’s important to keep the doctors in the loop about everything, anyway, and not to sugar coat things just because I’m handling them well.

I don’t know if anyone else does this, but I have a terrible habit of showing up to neurology appointments and smiling through them and saying I’m fine… like I’m auditioning to be a contestant on America’s Happiest Cripple or something. Doing this helps exactly no one. It’s like on some sick, subconscious level, I’m trying to get my doctor to like me. I honestly feel more of an instinctual need to hide my infirmity from them than I do towards anyone else. It’s messed up. The worst thing to hear from a doctor (which I have heard countless times) is, “You’re complicated.” or “Your case is challenging.” I don’t want to be a challenge or a bother. I just want to be better, and for doctors to stop grimacing when they read my chart.

Hello, is there anybody in there?

(Why, yes, I am referencing a Pink Floyd song.) I’ve been feeling kind of lonely recently, and I realized it’s because I’m not really connected with my friends anymore. I mean, we post memes and occasionally chat on Facebook, but there’s rarely deeper conversation.

I started blogging about 12 years ago on a platform called LiveJournal. I made some of the best friends I’ve ever had through that service. Most of them, I still keep up with over Facebook. But I realized, the other day, that I’m really missing the deeper level of communication that comes from sharing your life through blogging, so I re-joined in the hopes that I could regain that closeness with them. I was saddened to find that only 2 of my friends still regularly post there.

I wonder how many of my friends still blog at all, honestly. I only usually read what people cross-post to FB, and that’s not much. I should probably make more of an effort if I genuinely want the deeper relationships that we used to have. That might even mean emailing people directly to see how they’re doing, or, God-forbid, picking up a phone or using Skype to have an actual conversation. (Crazy, right?)

Speaking of making an effort, I have got to get up and get off the computer. If I don’t get dressed and go to the grocery store, we won’t have dinner at a reasonable time tonight, and that would suck. I should also probably eat some lunch, because, you know, eating is a good thing.

BTW — I asked my FB friends for suggestions for delicious weeknight meals, and I got several great recipes. I’ll be sure to hook you up with them tomorrow.

And the Awesomeness

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Three Great Things About Yesterday
I’ve been doing Three Great Things About Yesterday for over a year now, but it’s only just made it to this blog. I have to say, I end up with the best insights on days that, for whatever reason, pretty much sucked. The toughest days to come up with 3 great things for are days like yesterday, where nothing particularly good or bad seemed to happen. It was just relaxing. Still, you gotta look for the good, so here goes nothing.

  1. Accidentally found a kitchy, adorable coffee shop while waiting for a table at the Bongo Room. It was full of 80s movie memorabilia and couches. There was a mock Back to the Future Delorean parked near the ceiling and a replica flux capacitor on the wall. I don’t mind that the coffee is overpriced if I am that amused.
     
  2. Enjoyed a new episode of my favorite soap opera, TrueBlood. (Interestingly enough, the folks at HBO have created a blog that’s “written” by one of the characters on the show. It’s a pretty decent time-waster.)
     
  3. Deeply appreciated spending time relaxing with Adam. Loving that man is my joy.

What made your Sunday special?
 
Daily Cute


Somebody loves his teddybear. ❤
 
Everyday Earbug


I’m really digging this song because it both makes me want to shake my butt and laugh it off. I mean, how can you not be amused by TwerkBot?

entertained

Cool. Cool cool cool.

Posted in Just Life., Multiple Sclerosis, Music by

Well, that lasted a day…

ohwellI decided it was not worth it to stay off Facebook because I couldn’t listen to my Spotify playlists or publish this blog to all my friends on there. Also, I missed everybody, and it is my primary way to socialize, thanks to MS.

It wasn’t a total loss, though. I did get some graphic design work done yesterday for a good friend and have realized that I want to include things on this blog that I do every day on FB. From now on, 3 Great Things is gonna be a staple here. I’m thinking that the Daily Cute belongs here as well. One last “daily” item that I will be adding is a music video, because I watch at least 1 decent music video a day.

Awesomeness for Thursday, July 31st.

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3 Great Things About Yesterday

  1. Made it back to the gym and put in a half hour on the treadmill without seizing from overheating.
     
  2. After Adam sent back the Skin Balancing Kit I’d purchased from Paula’s Choice (which irritated the everlovin’ hell out of my skin and made it bright red, tight, and embarrassingly flaky), I was able to find good skincare at Walgreens for about half the cost. I will never order skincare from a mail order company ever again. If I can’t swap it out immediately and for free if it doesn’t work for me, I’m not interested. While Paula’s Choice says they refund all your money if you’re not satisfied, you still have to pay to ship it back and then wait up to 2 full months for your refund. 😛  I’m calling it a learning expense.
     
    For any interested parties, I’m now using CeraVe hydrating cleanser, Olay Regenerist micro-sculpting fragrance-free serum, CeraVe SA renewing lotion, and CeraVe PM moisturizer. The only things I’m missing are toner and sunscreen, and since I’m in the apartment 99% of the time, I’m really not that concerned about either.
     
  3. Really enjoyed dinner: baked salmon, asparagus, and rice w/ some moscato wine.

Daily Cute
Today’s Daily Cute comes by way of my friend Fox Circe… so it is, of course, foxy. 🙂



Today’s Earbug
Today’s Earbug is a catchy little ditty (written by a Big Machine’s Aaron Scherz) that, on its surface, empowers women by complaining in the lyrics about how the country music industry has made them into sex objects, but subversively maintains the status quo in the video.

Feminism aside, it’s been stuck in my head all damn day.

Staying cool…

staycool
I still have not settled on a cooling vest. There are too many options out there, and I have no idea which one is right for me. I have, at least, decided against an evaporative cooling vest.

I’ve had a tab open to this one for a full week now. I haven’t gotten it because it’s pricey and goes over your boobs. In my case, that means that it’s going to sit on top of my chest and not under my breasts and against my abdomen (which is where a lot of heat accumulates.) Because of that, I don’t think it’s probably my best bet.

This one looks like it’s adjustable for the female form, but I can’t reasonably go for it because for it to work, you also have to wear a $400 water reservoir and power supply.

The Kool Max Secrets Vest is the least expensive of all of them at $54 and looks to me like it might be the best design for me because I would not need to worry about my chest at all. It’s basically a 5″ long waist-cincher made of cold packs.

The only complication to making my decision is that there are 2 other waist-cincher model vests by the same company that are very similar — the Kool Max Slim Torso Vest that is longer by 1.75″ and contains 2 extra cooling packs for only $10 more, and the Cool58™ Secrets Vest which is the same size as the Kool Max Secrets Vest, but costs about $25 more because the cooling packs do not need to be frozen in order to be effective. Why am I not immediately sold on that one? Because the Cool58 packs do not remain effective as long as the Kool Max packs do. I’m torn.

Do you have a cooling vest? Do you like it? Any thoughts or suggestions are appreciated!

Life: It has it’s ups and downs.

Posted in Just Life., Multiple Sclerosis, Uncategorized by

DOWN: I still have no MS medicine.

The monthly copayment for my Copaxone is $1,790.53. Needless to say, I cannot afford that, so I’m looking for help.

Copayment Assistance Programs for Copaxone

The Assistance Fund – They’re out of funds, but say to check back online daily.

Patient Access Network – They’re also out of funds, but say to check back online daily.

Chronic Disease Fund – must call daily to check if they have funds. I’ve already been approved. They just have no money…today, anyway.

It has been tough asking for help repeatedly and being turned down, but I’m not giving up. My neurological safety is at stake!

UP: I had a great second audition tonight.

The second audition with the band went really well tonight. I had a fun time making music with them and am looking forward to making more music in the future — especially since they are interested in hearing some of my songwriting.

I am looking forward to making music a bigger part of my everyday life. It is clearly key to my happiness.

I am also stoked that the members of the band and I have more in common than just music.  I found out tonight that most of them are attorneys, which tickles me, since I was so close to becoming one myself.

Overall, things are hopeful and good.

Welcoming the Day

Posted in Just Life. by

It’s a beautiful morning here in Chicago.

Sure, it rained, but that’s part of living in the Windy City. It comes with weather. It’s kind of like the opposite of Los Angeles in that. Things are messy here, even the sky, and that’s okay. It’s very real, very “not on tape” and very in-your-face about it. The people wear their emotions on their face, sometimes smiling, often not, but never being afraid to make eye contact. They smile back at you though, when you’re brave enough to smile at a stranger.

And that’s what I did as I walked to Walgreens this morning to pick up some Red Bull, a Get Well Soon card for my Poppy, and some much-needed red hair dye.

See, I’m doing today a little differently from the way that I’ve been doing most of my days so far, and as it turns out, the day is already better, and it’s not even 11 am yet. (And yes, that does mean that I still haven’t eaten breakfast. What? I have bad eating habits…)

Today, I’m following some advice that I picked up while I was in the hospital: to try to be fully present where you are… not thinking about other things, but to be absolutely involved in your environment and to interact with it because you are a part of it.

The first, and most important part of being fully present is to Welcome the Day. Well, how do you do that?

How to Welcome The Day

  • First, you stretch (and I like to do this part in bed first, and out of bed next): You let yourself feel what it means to be inside your whole body. You reach to the sky as hard as you can, from the tips of your fingers to the tips of your toes digging into the ground. You want to feel your whole soul trying to escape your skin, like your very spirit is going to explode out of you. You have to let yourself get really big to do this! Arms Up! Legs Out! Take up as much space as you can! Twist around and realize that you are part of your environment, and next…
  • You stand tall, and proudly, and take a deep breath or two to welcome life-giving air into you. Out with the old, and in with the new.
  • Now is a good time for some light physical activity, if you have the energy. Some people like to run or go to the gym. Others like to do yoga. Me, I like to put on 2-3 songs and dance, when I remember to. At the hospital, they even had special morning mixes of songs that they would put on for us to dance to. It’s a really great idea to make yourself some playlists to get yourself going in the morning.
  • Next, you go wash up! This could mean a shower or simply washing your face and brushing your teeth — whatever your personal morning ritual for cleaning up is, so long as you do something positive to improve your hygiene and show yourself good self-care.
  • And now for breakfast! It’s important to give yourself delicious, healthy food to sustain you throughout the day so that you can be your best self and feel good.

Maybe you haven’t done your dancing for today… I know I haven’t, and I’m about to clean up the house to make it a place in which I want to be present.

Here are some great songs to boogie to, so we can have a great day together!

Awake and feeling able

Posted in Just Life., Music by

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.