Monthly Archives: October 2010

Where have I heard that before…?

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So I was reading an article today, "How Friends Matter To Your Brain," when I read the following passage,


"It turns out that the brain’s frontal midline, an area between the two hemispheres that is associated with socialization and the way you think about yourself, also shows a greater response from friends than strangers, even strangers with similar interests and lifestyles, said Fenna Krienen, graduate student at Harvard University and lead author of a new study on the subject.

"What we ended up finding is that closeness really seems to matter to these circuits in the brain much more than similarity," she said."

I had to chew on that for a moment because I could have sworn that that’s where I have 2 lesions. Time to look at my MRI report. I’d never considered looking up where my lesions are and how that may have affected me. Not that there’s any damn point to it, really – but if that’s what’s up, it might explain to me why, despite anti-depressants and a buttload of therapy, when life is going in such a *great* direction, I still battle with sadness or warped perceptions of myself that should not be there, where the only explanation can be the pain I consistently numb… and even though it’s definitely the real cause, I still blame the flu for us not having our honeymoon when I asked if we could go home. 🙂 Grr. With teeth. *sigh* Someday we’ll get to go somewhere together just the two of us, healthy-ish. *looks off into that brighter tomorrow* *smirk*
In lighter news, there’s a new oral MS Drug that’s testing at 31% reduction in relapses! Still not as good as Copaxone, unfortunately. Booo! Come on, Science! GET YOUR GAME FACE ON!!! Get me a pill that does BETTER THAN my shot. Pretty please, with sugar on top? 40% or higher! You’re only 9% away. YOU CAN DO IT!!!

Good Morning.

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Morning is always the best time for me. That little window between when I wake up and take my pills has got to be my most productive and mentally clear time of the day, bar none.

I woke up inspired to work on The Handbook for the Recently Diseased. 🙂

I just figured if I didn’t take a moment to pay respects to the work done yesterday, I’d be remiss!

Yesterday, Adam and I went to Social Security and the DMV and I did some rather significant things.

First, I let the social security dept. know that we are married, and I requested a new card with my new name.

I am now, officially, Rachael Renee Shapiro Majka. 🙂

So of course, we had to head off to the DMV to fix my driver’s license to say the same thing. There was, however, on the application for name change, a question regarding health. One that specifically addressed seizures. I was forced to answer under penalty of perjury. So I told the DMV about the seizure disorder and multiple sclerosis… and had the choice either to take a driver’s test to prove that I am safe on the road or to voluntarily turn in my license and instead receive a state issued ID.

I did the right thing and turned in my driver’s license.

It wasn’t the easiest thing to do for my pride, let me tell you that. I mean, sure, I haven’t driven in a few years now. I know that I’m not safe on the road, and I would not deign to put myself or others in danger by trying to drive. I am not that selfish or that foolish. But it still hurt a little. I had an *awesome* ID photo, and it was my first and only CA driver’s license. I would have liked to have been able to keep it.

BUT! In 2-3 weeks, I ought to have a new CA state ID with my new name and a new horrible ID picture because it was taken with no makeup in a black MTV Headbanger’s Ball T-shirt (I didn’t think I’d have to take a picture!) so if I ever do show it to someone, they’ll be able to recognize me by my photo really easily at least! 🙂

I have no idea what’s on tap for today aside from working on the book. I just know that it’s up to me to prove to myself that I make a difference every day. Maybe getting help from social security is a good thing in that it really makes me feel like I owe something to society, because I constantly feel the need to give back — moreso than I did before, if that’s possible. *shrug* I know I don’t “owe” anyone anything. I just like proving my worth.

*waves*

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Hey.

Tons of seizures today. Okay. Tons is an overstatement. Actually, it makes no sense since it’s a measurement of weight, but whatever. Colloquialisms. You gotta love em. In all seriousness, though, I can only recall time travel 3 or 4 times today and 2 naps. I’d be worried that I was having an MS relapse if not for the fact that we saw this coming months ago. Hell, we even planned the wedding around it. The dreaded “monthly” or, in my case “quarterly” visitor.

It really is astonishing to me how significant a player hormones are in not only a person’s ability to control their mood but in their body’s ability to control itself. My usual way of handling things (sitting on the couch watching what is available for free on the internet and on Netflix or Blockbuster and letting the pain pass as it needs to) is unfortunately not helping at the moment due to my choice of subject matter.

I’ve been watching Deadwood.

Now, you’d think that an awesome HBO series about the Old West and Bill Hickock and Calamity Jane and old town saloons and whores and gun slingin’ and poker would have shit all to do with MS and seizure disorder.

But you would be wrong.

Because, see, there’s this fuckin AWESOME good character in there who is the right Reverend of this community. And the Reverend suffers from something that no one knows the cause of. The doctor suspects it’s lesions in his brain. Yep. MS. In the Old West. Speaking prophecy between sermons. Later he starts having seizures. I shit you not.

About then’s when I looked up at the ceiling in real life and thought to myself, “Really, God? REALLY?” (And yes, for that moment and a half, I was that narcissistic in my thinking. ALL OF THAT PRODUCTION WORK WAS JUST FOR ME!!! FOR THAT MOMENT!) I mean, ultimately what he had going on took a rather gnarly turn — that’s where we’re at in the show right now, and I have to say, it’s upsetting to watch.

Then again, it was the old west, and he was without a whole lot of the doctors and medicine I have in my corner right now. And he was ….fictional. There is that. Just based on someone real. That matters to me.

Still, I don’t think it was a mistake that I see this show.

I don’t think it’s a mistake that I take further interest in the man who the Reverend was based on. He did a lot of good despite his condition, despite poverty, and despite corruption and lack of law in his area. And I do believe that if there is a God that it is his will that I exist the way that I do for some reason, and that it need not be one that I understand, simply one that I accept… that being the case, and my knowing he felt the same way, for some reason, when I saw that part today, it felt like something unlocked in me, sort of like how something “pings” in a video game. “Quest Unlocked” I don’t know why, but there’s something of the Old West in me. I just know it.

I am very glad to be a resident of the State of California once again today, as being one has allowed me the freedom to medicate myself in a way that has allowed me to find a way to accept my condition today. Too many seizures and too much arthritis pain have made me angry at this disease. I feel trapped in the house. I feel that I have been made “lesser than”, and it is my will, my fondest desire to fight back, and to fight back hard with all of my heart against it. To rise up and to beat it down into its place.

I want to go out and do things. I want to have a life. Instead, I’m hurting all over.

Just last week, I got to hang out with my friends Laura and Nathan for dinner so I know I’m blowing shit all out of proportion like a crybaby, and the worst thing is… *smirk* this is so … normal! 🙂

LOL! Oh thank God, as I’m writing this, I’m ready to sob like a girl because I’m having PMS like I ought to.

I’m a freakin mess. *lol* Apparently it’s time to go to bed. One of these days, I’ll actually phone a friend instead of whine online.

Missy Till, I miss you. Melissa Meridith, I miss you. Robin, Nina, Sarah, Mandy, Deb, AH HELL, IF YOU WERE AT THE WEDDING, ASSUME IT. I love you people. xxoxoxoxox night.

bang. head. desk.

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I wrote an entry earlier that let people know about SSDI and what I’m dealing with and how I’m trying to figure things out in my life right now.

TMI again, I think.

There’s a fine line to walk between bravery and stupidity and it’s the line between public and private exposure of potentially harmful facts about your personal life.

While I believe government ought to be transparent, I needn’t be to all at all times, even if it seems to me that I must, in order to be held in good esteem by many. To those who I feel it is somehow my duty to live beyond reproach because it is by their kindness I survive, I promise you, I do my best.

And again, to think that I owe the masses because I survived for 4 years on federal student loans that were then forgiven because of my condition, though not an agreement I entered into knowingly, I would gladly give a daily accounting of things I’ve learned from my condition for as long as they saw reasonably fit.

I’m sorry I’m sick, America. I’m sorry I’m hurting. I’m sorry I overshared, if it upset you. I’m sorry that your tax dollars are what’s helping me survive, and that I’m part of a problem that needs solving.

I hate MS so much. I hate myself for having it, so much. And I hate that I’m not supposed to ever let anyone know that, because talking badly about yourself is supposedly the worst thing in the world. It supposedly makes people like you less.

But I know how many of you see me. I know that to so many people, I am a waste of needed resources. I’m just another hungry mouth to feed and someone who is using needed money to fix pain problems that are caused by lesions in her neurological system. I cost SO MUCH MONEY. It would be SO MUCH MORE COST EFFECTIVE TO KILL ME. You know, unless I happen to be somebody awesome, like Bill Gates and you just don’t know it yet…

Because you know… I am so creative! I write so many songs… I write blog entries. I talk to people about their lives and how they’re doing and am supportive and kind… It makes me wonder what a life’s worth. *smirk*

I mean, apparently, the Social Security Dept has told me what my life is worth to the U.S Govt at the moment. And it’s not nothin. I mean, for what it’s worth, I *am* worth minimum wage. *Pff* And in 2 years, Medicaid.

That is, if they let me keep my benefits after I see them tomorrow and let them know that I’m married and want to change my last name. They say there’s a chance they’ll want to discontinue benefits after they find out how much your husband makes. I *really* hope that’s not the case.

The thing is, everyone knows there’s no money in Social Security. All the money is on Wall Street.

A friend of mine once told me about the Human Stock Exchange.

The Human Stock Exchange is a place for independent artists, musicians, filmmakers, writers, inventors, and entrepreneurs, to raise the financing they require to pursue and accomplish their respective projects. It is also a place where investors can discover unique and promising investment opportunities which would otherwise remain unavailable.

The Human Stock Exchange (HSE) employs several levels of functionality. Aside from being a revolutionary online marketplace where stocks in humans are traded, The HSE offers artists, entrepreneurs, and other sellers, the opportunity to utilize such a network to propagate interest and exposure beyond that of financial support.

I wonder, if all else were to fail, if I listed my qualifications, skills, and condition, if I could find employment somehow on there. Because, I’m money. And, dammit, I know it. I just have to find a way TO it.

I think I want to start a philanthropy.

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Today, my mom’s very good friend Jan Collins died unexpectedly. I say “my mom’s” very good friend, but Jan was a very good friend to me as well. A fellow red-head that was absolutely full of life, she was (and is) an inspiration to me.

During the years I could not move from the couch because of seizures and had no money, she and her husband, Eddie, sent me medicine that the pharmaceutical reps gave to Eddie as samples, and saved me a ton of money on anti-seizure and psych meds. In fact, aside from the KitchenAid mixer that Adam and I had secretly lusted after for years, Jan and Eddie had even sent me 2 full months worth of Cymbalta, saving me and Adam $120 in prescription copay money.

Jan made an indelible mark on my life, and I want to try and help others the same way she helped me. To that end, I’m going to try to start a philanthropy.

I’m calling it the Medicine Cabinet. It’s for people who can’t afford medicine and need help, especially before they are able to get on social security. I’m hoping to involve doctors who have extra pills leftover from drug reps, because pills have a shelf life, instead of those pills going bad, they can be there for the less fortunate. We could get drug companies involved too… and see about what laws there are about getting meds from people when they get their medicines changed because medicine gets wasted every day, and other people need it.

Jan helped me immensely in that way. I want to honor her memory forever.

HOME AND MARRIED!!!!!!!

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OMG YAY!

Okay, so this is a very late posting to say this, BUT

Adam and I are married!!! 🙂 YAY!

And the video of the ceremony, which we wrote together, and was awesome (if I do say so myself!), is available to view at

http://www.rachael-and-adam.com

Please go watch it! It’s about a half-hour long, is really fun and you’ll even get to hear me sing! 🙂

We came home instead of going to the Pocanos because I still feel like I have the flu, and I’m having a lot of Time Travel seizures. It just doesn’t seem like a good time to go to a cabin in the middle of nowhere, Pennsylvania. 🙂

It is however, a wonderful time to be home. 🙂