In It For The Parking

I hate my attitude at the moment.

I say this because I was two seconds away from typing "I hate my life."

Of course, earlier this morning, I also said that I was going to kill myself, and I was entertaining thoughts of it again.

I thought I was done with that part of my life. I know I don't want to die. I know I don't want it to be my my hand, at least. There's a part of me that wonders if I've lost the will to live...

but I don't believe it. I stayed here today. I stay here this moment despite the pain.

I stay here for myself, but today I stayed for Adam because I couldn't remember any other reason to stick around.

One of the things that is horrible about MS is that sometimes you just can't remember things you really need to remember... like coping techniques. So, one of the things that I need to do for myself is to get together my list - my reasons why life is worth living, and the steps that I need to take, or that I need Adam or a friend to take if I come to them and let them know that I'm having suicidal thoughts.

See, that's the kind of stuff that I never thought I'd forget. You don't spend time in therapy learning coping techniques against suicidal ideation or compulsion only to expect that in the time of need, that *poof* all those years of daily work won't have mattered for shit, except that you made sure to tell someone.

You know, when I was in high school, my mom gave me a blue ribbon that said in gold letters "Who I Am Makes A Difference." and I stuck it on the mirror in my bedroom. When she gave it to me, it came with a sheet that explained all about the campaign behind it. Apparently the campaign still exists.

Some days, it's enough for me that I stick around and exist to write in this journal in the hopes that it helps others who are in similar situations feel less alone. So, I guess, in the end, I took the step that really mattered, because I talked it out and didn't kill myself, and I'm here to write this lovely entry.

Anyway, I've spent this whole day being miserable and in pain for no other reason than that I doubt Dr. G will put me on steroids even if I need them, firstly, and secondly, I'm always so shy to call doctors on the weekend because I think of my family and I don't want to take them away from theirs.

Amazing how considerate I can be to my doctor, while I'm ready to be so inconsiderate to myself, huh? *huff* One thing at a time, huh?

If you're shopping at Amazon, please click through my link! It'll help me earn money this holiday season without you doing anything you wouldn't normally do! :)


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I didn't pass the 2009 California bar exam.

I guess I should be surprised, but I'm not. I wasn't when I saw it either, except for how they let you know. I mean, you type in your numbers and they say that they couldn't find you on a list... and that this could be possible because you didn't pass. I'll know "for sure" when I get back home and get the letter that says I didn't pass, even though I already know for sure. I mean, I had seizures all the way through taking the test. I even had one that was so big that I hit my head on the desk and fell out of the chair, but at least I got back up and finished.

So, it is what it is.

Am I gonna get back up on the horse and take the test again?

Maybe. Heck, I'll even go so far as saying probably.

In February? No way in hell.

I've decided that taking a licensing exam while going through seizures when it's an as-of-yet uncontrolled condition is choosing misery. STUDYING for a licensing exam while going through seizures and MS is an exercise in frustration and ignoring your body's current limitations. It's like trying to learn to walk on broken legs. You can do it! It's just painful as all hell, you can't do it for long, and you're never gonna do it the same way exactly twice. Later, when you're trying to walk that exact same way, you may or may not be able to do it. Odds are, your body won't let you.

Now, don't get me wrong. I AM PROUD AS HELL OF MYSELF for what I did. I set a goal in 2004. Go to law school, graduate, and take the bar exam. DESPITE BEING DIAGNOSED WITH MS AND A SEIZURE DISORDER, I COMPLETED THAT GOAL. I've proven to myself that I don't let anything stop me when I have a goal in mind.

If my current goal in life were to be an attorney, I would change that "Maybe" up there to a "Definitely." but my current goal in life is much more difficult than "become an attorney." It's THE BIG GOAL - the one most people unfortunately shift to the backburner without realizing it all too often - I want to find a way of living that makes me joyful.

Of course, this would be easy if I were independently wealthy - but that's not the case, and yours truly loves a challenge anyway. That being said, you have to enjoy the process of life! The process of studying, I love. I do! I can complain til the cows come home, but I sit on this computer all day long, researching things, reading, learning... I LOVE to learn. I LOVE to teach! I hate being BORED. The bar exam asks about areas of law that I really REALLY don't like studying. So, right now, I need a break in that area. Also, I can't put Adam through that again right now... and my seizures are still prevalent. Timing is everything!

So, this is a great adventure I'm embarking upon. The first time I'll be stepping into the great unknown. This is the first time in my life I haven't had a plan. I have no idea what exactly I want to do with the next year of my life, let alone the next 5 or 10.

I can't wait to meet the woman I'll become. I have a feeling she's going to be amazing. :)

Or, at the very least, a joy to be, which is, in my mind, amazing all on its own after so many years of self-loathing. While I deeply hate having this disease, I'm so glad for the healing that's occurred because of it.


Finally, FINALLY, I'm starting to like me.


And if you ask me, that's better than passing ANY ol' bar exam.

So Poppy, father of my father, hug-giver since birth, and physician since long before that, sent me an article in the mail out of the Memphis Commercial Appeal newspaper which discussed a practice that some people are using to treat MS.

Bleeding.

Well, not exactly bleeding. More like filtering the blood and then putting it back in...

I'm not kidding here folks. The practice is actually called Plasma Exchange.

Here's the lowdown skinny on it according to the Mayo Clinic:

This procedure involves removing some blood and mechanically separating the blood cells from the fluid (plasma). Blood cells then are mixed with a replacement solution, typically albumin or a synthetic fluid with properties like plasma. The solution with the blood is then returned to the body.

It is not clear why plasma exchange works. Replacing plasma may dilute the activity of the destructive factors in the immune system.

This treatment is only for people with sudden, severe attacks of MS-related disability who don't respond to high doses of steroid treatment. The treatment is most helpful for people with a mild pre-existing disability before the attack. Plasma exchange has no proven benefit beyond three months from the onset of neurologic symptoms.

Now, if that were the long and the short of it, I could very simply say to Poppy, "Thanks for the article, but that's clearly not for me, since I do respond to steroids." But it's not.

Of course, it's not, when you get headlines like this all over the country, thanks to Reuters, who in late April of this year prints an article with this title:
Research Shows Plasma Exchange Helps Multiple Sclerosis Patients

True, the first sentence says,

"Researchers at Aurora St. Luke's Medical Center in Milwaukee report that plasma exchange therapy or PLEX dramatically improves the health of multiple sclerosis patients who fail to respond to conventional therapies."

But all that people who LOVE people who have MS see is that headline -- that promise they have been looking for... the promise of hope. They heart starts screaming "OH MY GOSH, OH MY GOSH, THERE IS SOMETHING OUT THERE THAT WILL MAKE MY DAUGHTER/ SON/ FRIEND/ LOVER/ WIFE/ MOTHER/ FATHER FEEL BETTER!!! I HAVE TO TELL THEM NOW! I CAN SAVE THEM FROM PAIN AND SUFFERING!"

And it isn't true.

Well, MAYBE it's true, but it PROBABLY isn't. See, it's only good for those of us who DON'T respond to steroids... for those of us who are NOT seeing any help from Copaxone, Betaseron, Rebif, or Avonex. That means it's only good for MAYBE 10% of us... tops.

But it gets worse, y'all.

You're excited, and you want to share it with your loved one. Your heart is jumping up and down with excitement! But this process -- taking ALL OF THE BLOOD OUT OF OUR BODY, FILTERING IT, ADDING SYNTHETIC PLASMA, AND THEN JUICIN' US BACK UP -- it doesn't cure MS. And not only does it not CURE it, you have to keep doing it... every 3-6 months... and it's almost universally NOT covered by insurance because it's NOT 100% accepted within the MS community as safe or proper for all MS patients! Did I mention it's about $1000 a pop? Yeah. That.

Needless to say, Plasma Exchange is nowhere in my immediate future. I put it BEFORE the total annihilation of my immune system through Chemotherapy, and AFTER, well, pretty much everything else.

This is one of my BIGGEST pet peeves with sensationalist media: Any step forward is headlined as if it were a cure.

I'm so tired of false hope. I'm so tired of having to be the one to dash the hopes of my loved ones by explaining how something is a treatment and not a cure, or how something is in trials and isn't ready to go to market yet... or having to explain to people who are uneducated about the disease that NO, it has NOT been cured yet... the news story headline was sensationalistic and not actual. It's enough to have the disease and to be an educator, but to see the lights go out of someone's eyes when they are so happy and feel as if they've brought you the best gift in the world with the news of health... that one's tough. Being kind to them and not displacing your anger that the media has once again gotten a practical joke over on you is a skill that's good to pick up fast.

So, I've taken to looking at "Cures" and "Treatments" for MS the same way I look at diets and exercise programs. Until something's been successful for several other people for enough years that doctors agree that it's a really good thing, I think it's a fad. :)

You hear that, Poppy? I may not be 93, but I'll let those kids try their new, hip mumbo jumbo. :) This girl's stickin' with the classics til her Neurologists suggest otherwise. :)

Well, if my own boyfriend, who LIVES with me, could forget, odds are anyone could!

I wanted to take a moment to remind everyone that I am an affiliate with Amazon.com!

PLEASE take a moment to click through my link before you make whatever purchases you would normally make with them. I'm not trying to tell you that you OUGHT to shop with them -- just that if you DO normally shop with them, AND you use my link, you not only get the good feeling of getting exactly what you wanted from the store you wanted to shop from, but you also get to feel good about knowing that you've helped a friend who is very in need!


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