It’s Not Cancer!!!

The tumors in my liver are benign, likely caused by ~20 years of hormonal birth control. My bone marrow looks good. Chromosomes look good. Doc thinks that the high LDH was caused by nonalcoholic steatohepatitis (NASH) — a specific type of fatty liver disease, which we already knew I was dealing with.

So, amazingly enough, there’s nothing new to deal with here — just another situation where I’m being told to lose weight and increase activity. I’m on board. I’m eating less, thanks to gastritis, and I’m almost done meal planning for a month’s worth of AIP. Part of me is looking forward to it.  It’s gonna be my form of Lent.

One great side effect of genuinely believing that I was about to have to fight cancer is that I have a fucking long to-do list, filled with awesome things.  Stuff like, “Record all your original songs, even the ones that you think are mediocre.” and “Remember how to have fun by going on lots of adventures and writing about it.”


I will try harder. This health bullshit is boring AF.

I think I’m going to need to hire someone to transcribe music for me. For too many years, I’ve let my distaste for transcription (read: knowledge that my skills are so weak that it’s painful, slow, and often inaccurate) stand in the way of my songwriting.  It’s actually the reason that I dropped out of Songwriting I at Berklee.  I rocked all available lyric writing classes and absolutely loved them, but when it came to actually writing out my own music, to be judged by a guy who has taught iconic songwriters, I cowered. There’s no other word for it.  I felt like I just couldn’t do it… so I couldn’t. And I haven’t. Add the facts that the class was at 9 a.m. and I’d just chosen music business as my major, and dropping the class seemed like a no-brainer at the time.  If ever I wished I had pushed myself harder while in college, it’s then.  Opportunities like Berklee songwriting classes don’t come around every day.

One thing that 2 weeks of wondering about my mortality was good for was recognizing areas where I’ve let myself down, and I’m kind of sick at my stomach over my level of cowardice. I’m gonna work a lot harder on feeling bad about myself for actually making mistakes instead of feeling bad about myself for not doing things that I’m afraid I’m going to fuck up. You can’t fail if you don’t try… but if you don’t try, you’re kinda failing at life.




Life and things.

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.

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.


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

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.


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

Bang Bang!

30 WHOLE Minutes Without Facebook

fbclosedThe last half hour of my life was illuminating.

At noon EDT, Facebook went down for most of us in the US. All it took was 5 minutes of it not functioning for me to get up, start doing laundry, and finally pour myself some cereal for breakfast. I came back to the computer, and it was still down… so I hopped on Twitter and blamed Hamas for the outage. (Because who else could possibly be responsible? Clearly, it was some terrorist act!) I read through my feed in less than 10 minutes. And then I hopped on G+ and did the same thing.

It’s amazing to me that I can eat breakfast and entirely catch up on 2 social media platforms in 20 minutes, but often stay on Facebook, scrolling through articles and witty shit my friends say for hours. It makes me wonder what it is about that site that has the ability to keep my attention. It must be the conversations.

Annnnnnd SWITCH!

So, I’ve gotten the heads up from GoDaddy that my domain name is fixing to expire in October. They’re trying to convince me to renew 3 months early and pay $14.99/year for the privilege. I wonder how many people are stupid enough to just go along with it. If I transfer my domain name to a different service, I’ll pay about half of that.

This has me thinking: I’ve already got web server space at and I also pay WordPress $13 a year for the privilege of using my domain here. This seems like a silly waste of money, especially considering that WordPress puts banner ads at the bottom of my entries, which means they’re actually making money off my blogging. (And I’m not…)

To transfer a .com domain to 1and1 is $7.99 for the first year, $14.99 every year afterward… so essentially, there’s an incentive to transfer your domain to a different service every year. What a pain in the ass!

Awesomeness for August 1, 2014

3 Great Things About Yesterday

  1. Remember that awesome house I wrote about that Adam and I put a bid on and lost to someone who came in with a cash offer? Well, it turns out that the bank had misrepresented the amount of taxes on the property, since it’s on a double lot — so the deal fell through, and yesterday, the house went back on the market. 🙂 (We put in an offer today!)
  2. 20 minutes of bike riding at the gym with no seizures.
  3. Deep, deep love for the ability to use 5 Hr Energy, Aleve, and Afrin.

Daily Cute
The folks at Animal Planet are pretty much the world’s experts in cute. What’s cuter than baby animals? Cross-species friendships with baby animals.

Hold on tight, here come all the feels.

Everyday Earbug
I love funk & soul music. Have since I was a small kid. I blame the Muppets! Today’s earbug is my favorite modern, girl group jam since the Moulin Rouge remake of Lady Marmalade. I can’t help but dance to this… and for whatever reason, I’ve convinced myself that it’ll end up as one of the songs in the Sims4. It just seems like even AI would want to shake its booty to it.

And Some Good News In The MS Research Dept.

Scientists have generated stem cells from skin samples and turned those stem cells into myelin-builders.

Check it out.

“For the first time, New York Stem Cell Foundation (NYSCF) scientists generated induced pluripotent stem (iPS) cells lines from skin samples of patients with primary progressive multiple sclerosis and further, they developed an accelerated protocol to induce these stem cells into becoming oligodendrocytes, the myelin-forming cells of the central nervous system implicated in multiple sclerosis and many other diseases.”

I’m guessing that a treatment based off of this research will be available in the next 10 to 20 years… because science is slow.


Cool. Cool cool cool.

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.

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…

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!

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.

Getting back to myself.

I caught myself singing to the radio the other day.

That hasn’t happened in a long time. I used to sing every day, almost all day. First year at Berklee, when I should have been practicing yet another percussion instrument, I was taking voice lessons and hoping to switch to the vocal department, which I did, second semester.

So I’m sitting here, as I write this, listening to the electronic tag on, and I can’t help but think that some of this stuff sounds like some of the stuff I made for arranging that year. (with massive help from Matt Cahoon) 🙂 I had no idea how dependent I’d be on Studio Vision — that learning Garageband would take a bit of effort, and now I’m learning Cakewalk 6.

I finally feel like I’m *present* and am in the moment as well. I am not only creating art, but I’m doing it for no reason but because it makes me happy — and the second it doesn’t — then I can walk away from it and come back later. It sits heavily with me that *gulp* I am responsible for making my album. And it doesn’t get done by hearing the songs in my head, humming on the couch.

I have more than 10 songs. I haven’t created accompaniment for any of them on guitar or piano. I have no reason for that other than that I wrote the melodies to sing, but that doesn’t mean I can play harmonies for them. Yet. I’ll figure this out, though. I’m smirking on the inside thinking, “So THIS is why I took Harmony classes!”

But more importantly, I have a goal: to self-produce an album of electronic pop music

And fortunately for me, the larger goal has lots of mini-goals. Songs. And songs have parts.

Even better, with the move coming up, I’m about to be able to play piano almost all the time without worrying about waking anybody up. The best thing about my grandma and grandpa’s old piano is that there’s joy and no judgment on that keyboard. It’s where I come up with my best stuff.

And, if I don’t come through on this, I know have no one to blame but myself. And it would be pretty sad, because I know I could make some pretty cool stuff if I would just stop being lazy and/or a scardy cat.

I’m issuing myself a challenge. It’s the thing I’m most afraid of, to tell you the truth. So, I’m going to do it, and that’s all there is to it! I wish I were afraid of something easy, like bungee jumping. That’s at least quick. Nope. I’ve got to be scared shitless of whether or not people will actually like my music. So, I have to release an album, knowing that there absolutely, unquestionably, will be haters to go with the admirers.

But at least I won’t be stagnating. I’ll be learning and growing. I’ll be striving towards something and not spending my whole day on Facebook, doing laundry, and doing the dishes. That’ll just be part of my day. 😉

Besides, I’m out of excuses that I’m willing to accept. Marketability means nothing to me regarding this. I want a piece of me that I can leave behind for the generations and for the world. If I can get better to the point that I have increased energy and no longer have seizures every day by changing my eating habits, like I have, I sure as hellfire can learn how to use a computer program that will allow me to make music at home while my man is at work, and learn to record my guitar and my voice, and create an album that I can be proud of.

I like to tease that I’m not really on SSDI, but that I’m a government subsidized musician, artist, and blogger. Truth be told, I’ve been lucky that my MS has been playing nice recently. I want to say it’s because I’ve been so rigid about staying paleo, but I really feel it every time I cheat (which I really did this past weekend with… oh, every meal…).

I want so badly to run away from this challenge that I’ve almost erased this entry 3 times. But I’m not wussing out. I’m gonna put a hard time limit on the first song. I’ll have that one done and ready to hear by August 15. I’m giving myself extra time because of the move.

A Ragtime For the Bedraggled

I just wrote some lyrics. I’m gonna post em here – so I guess it’s more of a poem for y’all, since I haven’t recorded any sound with it. It’s about MS. I’m in a bit of pain at the moment: achy all over, tired, and I was thinking about how hard some of us work (at least I know I have at times) to be super happy and present — it’s about like putting on a Vaudeville act. I started hearing ragtime music in my head, and this is what came out.

A Ragtime For The Bedraggled

Silent inner predator,
It’s as though you are the
p h y s i c a l
manifestation of my
seething self hatred;
And I think
now that I’ve
Gotten it
Under Control
You Should Be Tooooo…

[:You should cooperate.
Why don’t you just play nice?
You seem to be the only part of me
that don’t know how. (ba-dump ba-dump!)

And maybe that’s why you devour me.
It’s cause I’m so sweet!
Well maybe I’ll never get that
Under Control,
But I will get you.
OooooooOoooooooOooOoo…. :]

Theme Song – “Dare You to Move”

Well, today in the Health Activists’ Monthly Awareness Challange, I’m supposed to come up with a theme song for my blog.

This is challenging, for many reasons, but primarily because the focus of my blog is so splintered. I talk about MS, seizure disorder, the paleo diet, the Tao de Ching, and my life… but the focus of the blog is supposed to be about living well with any disorder.

Those of us with chronic illness are constantly doing the best we can.

I think I’d have to choose Switchfoot’s “Dare You to Move” as this blog’s theme song. It talks about picking yourself off the floor, which so many of us with MS and seizure disorder and depression have to do on a regular basis. It’s all about fighting against the negative and continuing forward.

I hope you enjoy it.

Well… that was awkward, but necessary.

So, earlier this week, I set up an audition with a band who is looking for a female vocalist. (yay! right?)

Or I *was* trying out for a band as of last night. I’m not sure if they still want me now that they know that I have a seizure disorder. They acted like it’s no big deal, but it felt like a horribly big deal letting them know that the reason I can’t drive is because sometimes I shake uncontrollably.

*sigh* And that wouldn’t be such a big deal if I weren’t auditioning to be the front person for a band. But what does being a front person mean? It means being in front of a lot of flashing lights. It means cameras flashing. It means strobe lights flashing on stage — the same ones that made me go into a simple partial seizure the other day on the table at the doctor’s office, even with meds in my system.

It means I’m fooling myself, thinking that I can be a stage performer that tries to “make it” anymore. And that’s a hard truth that I have to accept. Maybe I can be in a cover band that plays for fun, but that’s about it… and it sucks to admit it.

But it doesn’t mean that I can’t song-write, because I already do that anyway.

So now, I just have to figure out how to get a new Mac so I can record my songs in demo form in Garageband and those songs to the right people.

And I might know a couple of the right people, come to think of it…

Ah, music publishing: where all the big money really is, anyway, coming in 5.3 cents at a time, even though it really should be 7.1 cents at a time… I never stop being glad I that studied you.