Monthly Archives: November 2010

I absolutely love giving thanks.

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I have had such a great visit with my folks and brother that I don’t want to go home today. 🙂 And Adam doesn’t either, so we’re staying until Monday.

This is the way that visits with family oughta be. 🙂 I hope that everyone else has had a good Thanksgiving too.

There’s an awful lot that I’m thankful for this year.

Obviously, I’m thankful for family and friends. I try as often as possible to let everyone know how much I love and value them, but sometimes it’s tough to really get it across because I’m complaining so much about my body or about what I can’t do.

My family and friends are so empowering and kind and loving and accepting of all the stuff that goes on with me. You all wrap me in a cocoon of care that lets me get through anything no matter how bad it is, and I can never thank you enough for that with just words. So I just love you big bunches, and keep on keeping on. Some days are pretty freakin’ awesome. 🙂 It’s always worth it, and I can never possibly thank you all enough for the love, support, friendship, fun, hugs, silliness, and awesome times I get to share with you. Thank you all for putting up with my bitching and whining and moping and yelling and crankying so we can all enjoy the good times together too.

I’m extremely thankful to be American and protected and lifted up by the support of everyone who is able to work in the country. SSDI is extremely helpful. Medicare is on its way in March. I know that I must have sounded terribly ungrateful when I first got it because I was hoping for more than $758/mo (That’s what they give people whose earnings prior to disability are only minimum wage, and having completed graduate school, I thought I’d have at least $1200/mo to live off of.)

I’m totally thankful for the high quality of medical care I’ve received this year. All bitching aside, we’ve come very far with controlling my seizures and pain. This is the 3rd day in a row I’ve been the first one awake at 8 a.m., made coffee, and started working on my book. The seizures I have now are all pseudoseizures and most of them are flashbacks. I’m able to admit the shit that happened earlier in my life that is causing this stuff and deal with it. That’s megahuge. I don’t know that I would have been able to heal this much without the care of such good doctors.

I’m deeply thankful that I am alive and mostly well. As you all are well aware, I struggle with suicidal thinking and existentialism from time to time, but there is nothing good about death. I celebrate life and even recently, when asked if I get resentful of having to take so many pills everyday, explained that I see it like an affirmation of life. 9 am and 9 pm are times to pray at the altar of modern medicine. 🙂

I am so thankful for my husband, Adam, who understands everything going on (both in life and with me) on a level that I don’t. When people talk about your spouse being your “better half,” I had never understood what that meant before — but he understands damn near everything I don’t understand, and does a damn decent job explaining to me or having patience with me when I just can’t accept, understand, or have patience with myself or the world for not conforming to the way I think things “should” be… and I’m coming to find that there is an awful lot of things in this world that simply don’t work the way I think they do. I’m immensely grateful that I have his hand to hold while I walk (or stumble) through this life.

I’m incredibly thankful that I took the month of November off of Facebook. I was on it all the time, and wasn’t living. I wasn’t playing guitar or piano. I wasn’t cooking. I wasn’t living. I had let myself spend all my time trying to keep in touch with my friends. I had actually let myself believe that my Facebook friends were real friends.

But really for really-real friends read blog posts, talk on the phone, email, stuff like that. Facebook friends are acquaintances. They’re the folks you chatted with in the halls in high school – not the folks who hung out with you for real. There’s a significant difference. Keeping it real is important. And so is keeping your personal drama to the handful of people who really care, as opposed to the 500 or so of your closest judgmental acquaintances. I know that even though this is public and will be posted to Facebook, the only people reading it care. And that is significant.

I am thankful for limitless opportunity. Despite all the challenges I’ve gone through and have yet to hit, life is full of opportunity. Berklee alumni stuff happens all the time. Sam (an old friend of the family) has opened the door for me to his publisher, for the MS book that I’m writing, and the future has not eclipsed the possibility of me taking another bar exam in CA or another state. And that is just off the top of my head. When I’m not so busy having seizures out of fear of the past, a beautiful future is ready to open up for me. You really can’t ask for better than that.

My life is wonderful right now, aside from the scary, painful seizure here and there, the unexpected freakouts, and spontaneous numbness/tingling/pain. When I let myself just roll with it, I’m incredibly happy. And when I’m not… well, I just deal with it as best I can. And really, that’s what life is, isn’t it?

I hope you’re all having a good Thanksgiving weekend. 🙂

Here’s a link to a really yummy soup that we had last night (and that Adam and I like to make with chicken sometimes) that uses up leftover turkey meat well!

Tex Mex Turkey Soup on AllRecipes

Enjoy! 🙂

Who says the world can’t be powered by bullshit? :)

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As a kid, cursing was one of those things that you were just not supposed to do. My parents did their best to raise me better. I got good and trained to have a lady’s tongue and proper etiquette. (It’s true! At St. Mary’s School for Girls, bad language is never tolerated, etiquette is taught for seemliness, and so is ballet for grace!)

Prior to puberty, I was a ham, but I was basically demure, polite, and pure. For better or for worse, though, all of that went out the window because almost all of my favorite people to hang out with were loud, lewd, crude, and rude. Can I help it if I enjoy being around people who know how to have a good time? 🙂

As for curse words, aside from “fuck” (which is clearly the most versatile word ever created), “bullshit” is one of my favorite words in the English language. Anyone who’s met my family or played cards with me will understand why. 🙂 That’s why, when I read about this, I got so excited.

A Chinese Dairy Farm Made The World’s Largest Machine For Turning Crap Into Power

No lie. The Chinese have figured out a way to turn bullshit — actual bullshit — into electricity. According to the article, the methane generated from the poop of 60,000 cows is enough to power 3500 homes, and if we use the technology over here in America, we stand to reduce carbon emissions by over 180,000 tons!

This is fantastic!!

BECAUSE AMERICA WILL NEVER RUN OUT OF BULLSHIT!!!!!!!!

It’s a renewable resource. We can always make more. 🙂

Independence from foreign oil is only an awful lot of crap away. 🙂

Credit, it all of its forms.

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First, credit where credit is due!

CONGRATULATIONS TO MY BROTHER, DANIEL, ON PASSING THE CALIFORNIA BAR EXAM ON HIS FIRST TRY! YOU, SIR, ARE TRULY COMPETENT!!!

Seriously, words can’t describe how proud I am of my brother. He is as smart as can be, twice as clever, and is going to make an excellent attorney. Though I doubt he’ll have as much *fun* practicing as I would, since he’s interested in business, international relations, finance, securities, and the like. He’s going to be making money. 🙂 (What? We can’t all use our advanced degrees to get into movie premieres and concerts and awesome clubs and hanging out with people who make art. Some people must concern themselves with important work, like dealing with big business and buying and selling incredibly posh homes and whatnot.) 🙂

Secondly, I’d like to give the Federal government, specifically the DEA, a great big noogie.

The Full Faith And Credit Clause of the Constitution is becoming more and more of a joke, thanks to an unnecessary prohibition of helpful medication.

There are 15 states in the union that have legalized marijuana for medicinal use. One of which, obviously is California. Another is Nevada, which is a very recent thing. This excited me because as someone who has studied the law, I know that it is legal for me to use my medicine in my home, but it is not legal for me to bring it in the car to my parents house when I visit for Thanksgiving because it is interstate drug trafficking, technically speaking. I was hoping that this trip, since they have recently opened about 15 dispensaries in the Las Vegas area that I could follow federal law and leave my necessary medicine at home and purchase some in the great state of Nevada, thus following the laws of both California and the Federal government while bringing new business to NV.

To this end, I called one of the local Las Vegas dispensaries, only to find out that you must be a Nevada resident and have a Nevada recommendation to become a member of one of their clubs and purchase medicine. They do not accept doctors recommendations from CA.

Isn’t that terrible? Locals only.

Now, I know that President Obama, son-in-law to a multiple sclerosis sufferer, has specifically told the DEA not to prosecute medical marijuana users, so I shouldn’t flip out about this, but these are the things my law brain thinks about. I guess if you have a condition that requires MMJ, you just shouldn’t travel at this point in history, or you should just not be worried about bringing it with you from home. *shrug*

Next, I want to talk about something that I think we all do from time to time, whether you have an illness or not: buying yourself time to process things that have happened in your life by repressing your emotions, only to later pay the price.

Paying the Piper: When Repressed Memories and Emotions Affect Today. Why it’s no good living on Emotional Credit.

I finally realized yesterday that a big part of what’s going on with me has to do with dealing with some extremely bad stuff that happened in my past that I simply repressed to the point of not acknowledging or even remembering, and that my body and psyche is simply dealing with it now. I become suicidal or violent to myself when I hit at things that I simply cannot process without changing my whole world view. I just…flip out or seize. It’s like pushing some kind of button. Add that to the emotional lability and I’m like a loaded gun, ready to go off, with a lack of understanding of my place in the world when sudden flashbacks happen. It’s not good for me or for anyone who loves me. Apparently, my mind is like a trained rottweiler. It’s just been trained incorrectly, and there’s very little I can do but try to accept that things are as they are and work to retrain it.

Finding out that a lot of my seizures are my brain trying to protect me from necessary (but painful) personal growth is frustrating to say the least. Needless to say while some people have a hard time being wrong, this puts it in a whole other category. And here I thought I was humble. Apparently not. Still, it suggests that the work with EMDR should alleviate many of the seizures I do have. So that’s something.

At least I can give myself credit for doing the hard work and not giving up.

You can take the girl out of the Dirty South, but you can’t take Dirty South outta the girl.

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I arrived this morning at Dr. G’s office for my 6-month MS checkup at 10:36 am. This was 6 minutes later than the 10:30 appointment time because there was construction on the electric wires on Coldwater Canyon.

(A side note: Is there ever a time when you need to get to an important doctor’s appointment, when you leave just right on time when there isn’t surprise construction? I think there’s some kind of Magic Construction Gremlins whose job it is to make sure that traffic is slowed specifically to annoyance or maximum anxiety level. At this point in the game, I’ve started expecting them and leave 15 minutes earlier for appointments. But still. every time. No matter what. *shrug*)

I’m sitting there in the waiting room for more than 15 minutes when I get called up finally and am told that because I was late, the patient coordinator for the doctor has decided that the doctor won’t be seeing me because the doctor is so busy with patients that she wants to see the person who is on time and came after me.

Call it IIED. Call it me being pissed. Call it being high class, but before I could blink, breathe, or think, the words out of my mouth were, in very loud, very southern near-redneck twang “THIS IS SOME BULL-SHIT! I was stuck on a damn canyon road with construction, and I was 6 minutes late and have been here for near 20. I can see the doctor from here, and I had IV Solumedrol last week. If she wants to sign my piece of paper* and she can’t spare her precious time for me because my schedule didn’t match hers, that’s fine. I’m feeling okay today, but sign the paper. I took over an hour to get here, and this ain’t right.”

You should have seen the place. Full of old people, and some folks in their 30s and 40s who were obviously hurting. It went up like a damn beauty shop.

“SIX minutes? That’s how exact you have to be here, or they’ll turn you away??” “That’s just ridiculous. Traffic here is terrible. They should at least give you 10 minutes.” “That poor girl was obviously on IVs last week. Look at her arm. It’s bruised all over, the least her doctor can do is give her a moment.””

There’s even a sign, at the front, saying if you’re more than 15 minutes late, they can reschedule you, but you would seriously think those people at UCLA had never had a late patient in their life. 6 minutes is not 15.

The reality of the situation was that the Patient Coordinator, S, is the same person who always gives me trouble when I need IV-SM and who I have to run a dance with regarding faxing things to Healthcare Partners Arcadia, so she was trying to lord her power over me, and once again, she made Dr. G look bad: this time to an entire room full of patients. Sure, I was acting out, but I got seen.

And at the end of the day, that’s what matters: getting good medical care.

Adam and I have been discussing whether or not I ought to get a new neurologist. Dr. G. is incredibly knowledgable, kind, patient, and easy to work with, but working with the UCLA/Healthcare Partners Arcadia dynamic when her patient care coordinator gets irritated and irritating at every interaction makes a part of my necessary healthcare unnecessarily filled with bad feeling.

Still, there’s no guarantees anywhere, and there’s something good about knowing your situation. Maybe the best thing to do here is really embrace the Southern-ness in me and pour some sugar towards that vinegar bitch who’s workin with my good doctor. Tis the season and all, what with Thanksgiving and Decemberween upon us. She might hate doin the work, but she’s gettin it done, and I need her to do her job. Saying “thank you” is not only the right and nice thing to do, but doing it right nice might make all the difference in the world.

I wonder what says, “Thanks for doing my paperwork and taking care of me, even though I’m sure you have an intense dislike of me.” Cookies? I wish I could afford Edible Arrangements. Fruit is so much better tasting and better for you! But I bake good cookies. And brownies.

And I can totally understand why this woman would dislike me. Every time we have to interact, it’s when I’m feeling my absolute worst, and we’re mired in red tape that is stopping me from being able to get treatment. We fight bureaucratic red tape together, and each of us is given a different set of instructions. My instructions say to call her and tell her to fax to a particular number. Her instructions say to do something else. When I contact her and tell her to fax to the particular number, it’s like me telling her how to do her job, every time. But that’s my job. Otherwise, the HMO doesn’t do their work for 2-3 more days, and I’m just not that patient when I’m hurting that badly.

Who am I kidding? I’m not that patient when I’m not hurting. Still, I also don’t want to reward bad behavior. It shouldn’t be like “be a cunt, get a cookie,” but the world’s not fair anyway, and I wouldn’t be feeling better if she didn’t help me anyway, every. single. time. (You’d think it was her job or something!) Deserves thanks and respect.

Speaking of thanks, I have thank you notes to get to! I’ve sent several out, but there are a lot that I’ve already written that I just haven’t put addresses and stamps on, so that’s next on the hit parade.

Oh, and I TOTALLY SCREWED UP and got on Facebook for a hot minute today. I picked out photos for a wedding album and left my computer up for several hours while we were away when we were at the doctor’s office, and when I came back people had thought I was up to chat with, and so I came back and accepted a friend request and status updated that I messed up. But I’m still sticking with it til Dec. 1 because I’m doing more than just staying on that page and seeing what’s going on with my friends. I’m actually doing… life.

**BLATANT ATTENTION WHORING** 🙂

Seriously though, I miss socializing. Badly. I have had very few emails or calls from friends this month, so it’s been good for handling my business, but for real, folks, I genuinely, deeply care about most of you. And if you don’t know if I’m talking about you, or you’re not reading my posts and therefore don’t think this line means “Rachael is specifically asking you — yes you! — to email her or call her or comment on this entry because she’s feeling better and wants to do stuff and is frickin lonely and can only hang out with Adam so much,” then you are a dork, and not in the usual, loveable fun way. 🙂

Please, let me know how you’re doing. Get in touch.

* – I’d brought a form from Glendale Water and Power to get $10 off a month b/c we have to keep the air temperature reasonable so I don’t overheat. Your doctor has to confirm you have MS. I recommend that you check for this perk if you have MS and are having trouble affording utilities!

What does Everyday look like again?

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I am falling in love with Wolfgang Amadeus Phoenix. 🙂

To be really honest, I’m falling in love with actively listening to music again. It’s like I’d forgotten that I could do that.

It probably sounds daft… forgetting that you can listen to music, but there are lots of ways of living life.

One thing that going in and out of seizures, in and out of confusion about what I’m doing damn-near-constantly, that sucks on one hand but that is good on the other, is that I get a really crystal clear picture every once in a while of what I’m actually *doing*… which has been very little besides sleeping, web surfing (but sadly not on social networks, and I desperately miss *everyone*), and watching whatever Adam has playing on the TV recently.

This puts me in a position that most people don’t get, once the IV-SM has done its job. I get to re-learn how to live – and if I’m smart, I’ll stay focused on what I can do, not on what I can’t.

Me Against The Disease: The Battle Rages On
One of the things that makes “coming back to life” hard is the resistance to do it at all: the persistent, heavy thought that any positive changes that I make in my life are all for naught. The terrible idea that anything I do doesn’t matter, and that in a few months, (may as well be in a few minutes) I’ll just be back on an IV, and whatever changes I make are struggles that I cause myself for no good reason anyway.

That is stinkin’ thinkin. And it will always be there after a relapse. I know that. It’s the MS talkin’ through me… trying to make me accept defeat, even when I just whooped its sorry butt with a round of IV steroids.

It’s as if I can hear my felled opponent, beaten, whimpering, and pleading with me. “Truly, you need to stay on the couch (doing jack crap and not having a life). If you stay at home (and don’t go and see friends and family and don’t accomplish anything else with your life), then I won’t be taking anything else away from you. You’ll be nice and safe here on the couch… And just think, if and when you start having seizures again, you’ll already be where you need to be!”

Like anyone with half a brain would bargain with their disease. You can’t fool me, MS. I WIN. 🙂

Time To Put MS Back In It’s Place
I was talking to a friend today about how difficult it can be not to let your disease become all-encompassing in your life. He was wondering how I did it, since seizures eclipse your consciousness.

Honestly, there are days where it’s just dealing with seizures, one after another, most of the day. Those days belong to MS and seizure disorder. But there are also days when I don’t have seizures at all. Those days, I try my absolute best to take back for myself. I try not to let MS and seizure disorder to take away my fun or my life. I *strive* to remember who I am and to be the best Rachael I can be, because otherwise, the MS and seizure disorder wins.

I think it might help to explain to everyone the way that I view MS, seizure disorder, science, and my place in the universe as to how I cope with my disease.

It’s a great time to be alive, comparatively.
When it comes to the human body, to the brain, to chemistry and medicine, I believe that we (humans – or any living thing) are essentially very, very complicated “robots” (for lack of a better word), with none of the intelligence being artificial. For whatever reason, I’m currently living in an age where we can’t fix me yet. We don’t have the technology. Multiple Sclerosis is a disease where the body’s immune system attacks its neurological system. My seizure disorder stems from that. So, in my book, the two go hand in hand where fixing is concerned. Someday, new synapses might be as simple to replace as capacitors are today. Until then, it’s a waiting game.

When I think about the future, I do so hopefully. I always think about sticking around, because who knows when they’ll be able to fix my problems, and who knows how wonderful the world will be then. I am so hopeful for the advances of science, for the achievements that I cannot wait to hear about. I have faith in the future. I think about how 25 years ago, the Apple 2e was the hottest technology, and about how 25 years before that, a personal computer wasn’t but a thing of imagination. I can’t fathom what medical technology will look like 25 years from now, other than to know that it means good things for health… for us all.

But for now, this disease remains the enemy of everything “Rae.” That’s why, every day, it’s a battle of Me vs. the Disease.

So that got me to thinking: What things can I do every day to be the best player on Team Rae? Objectives: Weaken MS’s hold on my life. Increase Overall Awesomeness. 🙂 How else do you live without it being in charge?

Well, right now I’m doing a good job with taking my medicines on time every day. That is necessary. The medicines buy me time. They are a constant affirmation of life.

But what does MS really hate? The way I see it, the first thing that it stops me from doing is moving, and, according to all of my doctors (and good common sense), exercise is good for me. Therefore, objective #1 of things to add into my everyday routine is some form of daily exercise.

I think the second thing that MS seems to really hate is letting me feel secure in having a path or a plan. It likes to mess things up for me and take away my opportunities. Well, I am writing a book. Whether or not it gets published is another thing entirely, but I can write this book regardless of (and in fact because of) my physical condition. I’ve even had the good fortune of a family friend tell me that he’s helping me get my foot in the door with his publisher. 🙂 I have a table of contents already. I can write in that book every day. In fact, I ought to.

And music. The love of doing. The act of being in the moment. Practice that makes perfect, but demands daily diligence. If ever there were a prescription for how to be in the moment, it is to make music. It demands presence and focus and love and respect.

The Key To Living Well With Chronic Illness Is Actually Living, Despite the Illness
For the longest time in my life, I have searched for “why” I am here, sometimes to the depths of anguish. I’ve often wondered why I suffer. I think I know why now.

Because I’m willing to share. Because I’m willing to explore. Because I write. Because it helps others and it does make a difference, not only to me.

I may have hoped to be a rockstar or a DJ when I was little. I may have hoped to be a power attorney, brokering Hollywood deals when I was a grown up. But in my heart of hearts, who I am has never changed. I always look for hope. I always look for answers to my question of, “why?” — especially “Why do I feel this way?” or “Why is life like this?” And I always try to leave a clear trail of understanding behind me. All I ever really wanted was to make a real, positive, lasting difference in the world, and I think I’m doing that.

When I wake up in the mornings now, working on my book, writing in this blog, I have purpose. I know this is part of who I am, and nothing can take that away from me.

YAY! The proofs are up! :)

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Adam and I have been waiting forever and a day for this and I even just broke my “No Getting Straight On Facebook” rule to post this on there.

Go here to view proofs of our wedding pictures!

http://www.myeventorder.com/event/index.php?id=shapiro_majka

Just log in by using your email address and the password is the date of the event, 10/03/10, but without slashes.

There are only about a bajillion pics. 🙂 (Seriously, almost 1300 in total!)

Hope you enjoy!

Like Night and Day.

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I am feeling better.

I’m not 100% yet, but I would definitely say that this morning I’m rockin’ 87% at least. I was up and dressed, teeth brushed, dog walked and all by 8:30 in the morning. Nevermind the facts that I haven’t showered or that I went to bed at 8:30 p.m. last night. 🙂 The boiler in our apartment building is broken, so no one in our complex is smelling their fresh best today. Thus, I consider this a win!

Actually having energy and not feeling like whimpering just from being awake makes a huge difference in your outlook for the day, as well as getting your mind wrapped around what you want to do with it.

I feel like I should leave myself a note somehow. “If waking up consistently makes you want to cry and go back to bed, it is time for IV-SM.” Like there should be some kind of list for me and Adam that over time I’ve put together. “IF X, then IV-SM.” Because, I swear it’s not even like being in the same body. It’s the difference between feeling like you’re dying and feeling like you have life in you.

I have actually been endeavoring to still have an identity, believe it or not. Some days it proves easier than others. Still, I have found, over time, some answers that needed finding for myself.

I said that if my brother didn’t pass the bar exam that I would study for it and take it one last time with him. I don’t know that I am feeling that. I am currently helping a friend here and there with learning 1st year cases and whatnot, but the idea of putting myself under the kind of pressure that the Bar Exam puts you under just doesn’t jive with me anymore. It’s like asking to get sick again. I don’t want to. It doesn’t sound like a good time. Neither does wasting a thousand dollars on the test.

I mean, I’m working on a to-be-published legal paper with another friend of mine. That’s totally legitimate. I can still teach classes to help musicians and whatnot or just give advice here and there without being an attorney. There’s no shame in that. I have to wonder what it is about attaining the license that has such a hold on me, especially considering that I don’t even want to do the paperwork that the license gives me the right (and often obligation) to do.

Maybe I’m just seeking a “Stamp of Approval” from an objective source.

The thing is, I don’t think I need it.

On the day-to-day, there’s not a ton of stuff I can be depended upon to do, what with the unpredictability of my body/brain, if I’m going to be honest with myself, (and really, that’s the only way to be) I need to craft a life that works within the parameters of my abilities so that I can be happy.

So, I’m going to take some time to focus on the things I can do, and figure out ways to build a happier Rae. I know that madbard and mixophrygian are due some music from me at the very least. Making music on Garageband makes me very happy, even if it takes me forever because I am slow and keep forgetting how to do what I just did. Between that and guitar with Shane, I know that I’ll get back to myself.

That’s what I’m trying to do right now, really. Be a better wife: clip coupons online and off, learn how to better manage a home, make music, do some legal stuff, and not suck as a person. Hell, I’ll even go so far as to say I’m trying to be a good person.

And oddly, that’s hard right now. I remember when this would have been a walk in the park. I guess I’m not Supergirl anymore. Maybe I never was… but I worked really hard. At least, I had myself fooled. I guess that’s what it comes down to. You can do anything you put your mind to, as long as you’re ignoring your body. 🙂 I just can’t ignore mine anymore… or at least, I don’t want to.

Emotional Lability is not Bipolar Disorder.

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One of the things that makes life with multiple sclerosis incredibly difficult for me is emotional lability.

It’s not something I talk a lot about because, well, it doesn’t merit it. Most of the time, I am able to handle myself like a normal human being. It is surprising to me, however, how little information is out there for most of us, and how quickly people are able to jump from, “You have mood swings” to “You have bipolar disorder” when emotional lability comes into play.

What Is Emotional Lability?
Emotional lability, also called Involuntary Emotional Expression Disorder (IEED) or the Pseudobulbar Affect, is a medical condition that causes sudden and unpredictable episodes of crying, laughing or other emotional displays. (You know, like anger or yelling…)

IEED is seen most often following brain injury or in people with dementia, motor neuron disease, and multiple sclerosis. It can appear at any stage of the associated diseases. It is found in 10-20% of people with MS, currently.

IEED is underdiagnosed because the symptoms mimic other clinical emotional disorders, including depression, bipolar disorder, schizophrenia, generalized anxiety disorder, and even epilepsy.

Of the 59% of patients who told a physician about their symptoms, less than half received a diagnosis or treatment, and the diagnosis was most often depression.

Bradley (The doctor who was running the study) said, “This is unfortunate because IEED seriously hampers social interactions and can have a significant deleterious effect on patients’ and their families’ quality of life.”

If that ain’t an understatement, I don’t know what is.

I can personally attest to the world of suck that is Emotional Lability. It has lead me to having crying jags on the bathroom floor of a public restaurant on more than one occasion for reasons that I could not give. It’s lead me to screaming at the top of my lungs at my husband for absolutely no good reason, and I honestly believe it’s got a lot to do with a lot of the confusion and swirling self-hatred I have for my inability to pull myself together and have any kind of momentary self-control and act like an adult while going through strong emotional episodes recently.

Emotional Lability or IEED makes you seem like a crazy person because, for that moment, you *are* a crazy person. You completely lack the capability to control yourself or your emotions. Your brain meats — they do not work the way they should. It’s a physical failure that turns you into a monster or a pathetic freak. I have yet to experience the inappropriate laughter, but I’m sure it’s no less fun being a spectacle from that angle.

Still, it’s good to know that it’s a short circuit. At that point, it puts it squarely in the, “How do we prevent these things from happening, and how do we manage the aftermath?” way of thinking. *sigh*

Just one more part of how MS is *broken*.

http://www.wisegeek.com/what-is-emotional-lability.htm
http://psychcentral.com/lib/2009/involuntary-emotional-expression-disorder/
http://ms.about.com/od/signssymptoms/a/cmp_ieed.htm
http://www.pbainfo.org/patient/living_with_pba/understanding-impact-pba

All sorts of things!

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But first something awesome, whose time has long since come, courtesy of The Daily What, I give you,


“Sparkles,” My Little Soldering Pony

What can I say? She makes me laugh. 🙂 And point to her as an argument for intelligent design. 🙂

First thing’s first! Medicare.
*in a Movie Announcer-Guy Voice* Coming soon to a disabled me (not necessarily near you): Medicare A (hospital insurance) & B (medical insurance) in March 2011! :)*end movie voice* That’s only 3 months away!

What’s the significance of March? Well, March of 2009 is when I applied for Social Security. For whatever reason, that’s what’s determinative for when you become eligible for Medicare! 24 months after the date of application. Not when you became disabled, not when you started getting aid, but when you applied. Good to know! (Though I’m not sure why. Probably for the book.)

I’ve also put in for extra help with prescription drug costs. Hopefully, that will come through. I can’t see why it wouldn’t, especially when they mailed me the form. Usually when the government does something like that, it’s a hint. 🙂

Ok, maybe the gubment’s not always tryin to fuck you. There’s just a system in place, and I have no idea how it works, so I’m panicking like anyone would when they’re entirely out of control of damn near every aspect of their life that used to make them feel like who they are.

That is very good news, if you ask me, since my current insurance is on the order of $400/month, which doesn’t include the $230 or so that I have in prescription copays after that. $630 is how much of the $758 that SSDI gives me on the 4th Wednesday of the month? Medicare could make a very big difference for us. I’m not sure if it’s meant to replace my current insurance or supplement it. I’m going to need to read up and learn about it.

What I really need to do is figure out how to make whatever the figure of money is that you’re allowed to make while you’re disabled without losing disability, while being disabled. Because it is just not cheap to live, not for anyone, really. AND I also need to learn how to make what money we DO have stretch as far as it possibly can.

Money, Money, Money, Money…Money!
Ok, so one of the things that I’m doing that I thought would be helpful is clipping coupons from the Sunday paper and figuring out where to shop using those coupons, but that’s only marginally helpful unless you’re going to be buying in bulk and stocking up on things. And I wonder for a couple, how much sense it makes to buy in bulk.

Another way I’ve thought about saving money is using dried beans instead of canned beans, when beans come into play at all. I love that site. It has so many great ways to use your crock pot to save money. (Did you know that your crockpot can double as a rice cooker? I didn’t either! But I’m stoked about it for Thanksgiving!)

I love sites like Money Saving Mom and Real Simple, so I’ve set out to learn what I can from them, and sit down and do the hard work.

Adam has been doing a lot of work looking at Android apps that might make grocery shopping and whatnot easier for us. I know there are a lot of coupon apps too.

I wonder – do you all have any suggestions of websites or apps that make you feel more competent as a homemaker, or as an adult — that help you organize or help you get better deals or whatever?

Oh Yeah, I’m on the Drips too.
So, Nurse Debbie came out yesterday for day 1 of 3 yesterday and I got to log on to Facebook to show her wedding pictures. 🙂 That was pretty awesome. I’m tellin you, even without the professional shots, which I’m certain are fantabulous (and have been promised to us in the requisite 6 weeks after the event which is ohmygahsonotsoonenough,right?), between cargile24 and rawee1, we practically have a wedding album online already on Facebook at least. It’s my goal to have a gallery of the good shots up on http://www.rachael-and-adam.com by time for the holidays, along with the video of our first dance and some other goodies. 🙂

This go round of the infusions has me very awake. I woke up with a tension headache at 6 am, so I came down here to check email and vaporize in the hopes of getting back to sleep. It’s 8:08 now. We can see how well that worked out. 🙂 Ah well, 6 am’s not too terribly early though, so at least I got some sleep! I’m seriously on the edge of panicky, and am having extra muscle tension. Fortunately, with the extra energy, I ought to be able to do yoga. I’ll just have to text the nurse beforehand to make sure it’s ok to do w/ the IV still in.

I hope you’re all having a very happy Thursday. It’s 11/11! Make a wish! 😉

Relapse? Or just a few bad days?

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If there’s one thing I truly despise about my condition, it’s not knowing whether or not I’m having pseudoexacerbations or an actual exacerbation of my condition.

Pseudoexacerbations are just like exacerbations or relapses, but tend to last 24 hours or less and are triggered by your body fighting off an infection or healing from something non-MS related. And yes, it is possible to have one pseudoexacerbation after another for several days, which mimics an actual exacerbation.

This makes it very difficult to know whether or not I need to call Dr. G and say, “Hey! I think I need an IV-SM drip.”

I have had terrible sleep for the last several nights, littered with nightmares. This has lead to days with more seizures than normal because adequate sleep is required to have days that are primarily seizure-free. Last night was no exception. In fact, Adam let me know that he was up with me most of the night and that I’ve been both talking and having seizures in my sleep.

This is very not good. If I can’t sleep, seizures will eat me. Ok, that’s a little dramatic, but I think you get my point. Sleep, real good sleep is necessary, or the seizures just keep getting more frequent and longer. Seizing hard enough during sleep that I wake the person next to me, when I’m on a memory foam mattress, despite being on the right dose of meds, leads me to believe that either a.)I have some other illness of which I am completely unaware, or b.)I’m having an MS flare.

GRAWR!!! I’m supposed to go to Berkeley this weekend to visit abitbattyhere and mgnficntbastard!!! WTF, body!?! I HAVE JUST STARTED GETTING A LIFE! I HAVE GUITAR LESSONS ON WEDNESDAY. I ALREADY MISSED LAST WEEK BECAUSE OF SEIZURES!

Fuck. I already missed last week because of seizures. I’ve already waited a week.

I remember this game. When we wait and see, we wait and see me get worse until I’m seizing all the time and I finally give in when I can’t do anything at all because my optimism holds out until I’m hospitalized.

I’m already hurting from the moment I wake up until I go to sleep almost, even with the extra meds. I’ve stopped vaporizing weed to make me feel better unless I’m hurting to the point that I’m either crying or about to start crying, because I’ve stopped seeing the point, and I’ve started feeling suicidal again… like all of this is pointless and like I’m a cursed creature that for whatever reason, God hates.

Yeah. *sigh* It might be time for the drips.