Monthly Archives: May 2010

I love my life.

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I’m sitting here at 5:15 p.m. watching home movies of our first batch of foster kittens with our current 3 five-week old foster kittens sleeping (ok, walking) on me. If I haven’t preached the gospel of fostering kittens recently, I should do it again soon, or at least talk about how awesome it is for me because I love my babykitties. I need to be able to nurture and love on something, and these furbabies are all too happy to oblige. 🙂

Anyway, I’m very happy to report that after 4 days of IV-SM, loads of sleep, lots of water, and some quality time with my parents and with Adam, I’m starting to feel a lot more like a human being.

I think sometimes by the time that I allow myself to say, “Ok, I think I might need drips.” I’m probably 2 or 3 weeks past where I ought to have let myself get drips*. It’s like, because MS is one of those remitting-relapsing diseases, I want to always believe that it’s going to just get better, but instead I just end up wearing Adam out for almost a month and causing myself to feel pretty awful for 2-3 weeks while I make good and sure that it’s not my imagination that I feel like crap. I really need to trust myself more when it comes to needing medical attention.

I also tend to forget just how tough it is for my body to deal with the sudden lack of corticosteroid in the system. I am so oversensitive – physically and emotionally. Fortunately, I have medication for that. 🙂 I’m just gonna be REAL slow and be staying in the house. Nothing new.

SO! What’s next on the hit agenda, aside from a Brak Show marathon? (What can I say? I get in moods sometimes and if I’ve asked it once, I’ll ask it at least 10 times…. If you’re not watchin’ some Brak then how do you know you’re relaxed?)

Here’s What I’ll Be Doing With My Life For The Next Little While If I Have Any Say In It (Formerly Goals):

Learning to live a day-to-day-life, calmly, sanely, and in tune with my body
Planning the Wedding 🙂
Being a good kitten foster mommy 🙂
Songwriting
Learning Guitar
Getting Back in Shape as my body allows for it
Continuing to learn yummy, healthy cooking skills
Learning how to use my sewing machine, I hope! Anyone in the Burbank/Los Angeles area feel like teaching me a thing or two? 🙂

I have had a few seizures since I started this post, but I think it says what I want it to. At least, it captures what I want to remember, which is that I’ve already scheduled an IV-SM drip for late August with my nurse as a prophylactic so that I will be in top shape for the wedding. At first, I thought it was so that I wouldn’t have a relapse come time for the wedding. I wonder if MS even works that way. Probably not, or we’d all be on steroids all the time. dee-dee-dee! I r smrt. 🙂 And that’s my queue to stop writing. *lol*

* – “Drips,” for those who are not jive to the lingo, means getting corticosteroids via IV infusion over the course of 3-5 days. It’s what neurologists prescribe when you’re having an MS exacerbation.

I may not be SuperRae, but I can walk the dog!

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That’s right, you heard it first. After 2 days of Solumedrol IV, I was able to take the dog to the end of the block and back this morning and be the pooper scooper all on my own.

And I am awesomely proud of that because Adam got to sleep in. *lol*

Debbie, my super-sweet IV-SM nurse ougtta be here in the next 15 minutes or so, so this is destined to be an entry of the shorter variety.

You know… I just realized that I didn’t even announce on this journal that I was having a really bad relapse and have had a beeyotch of a time getting treatment this time. Ha! SAVED IT FOR FACEBOOK. I guess that’s what happens when you are more interested in thinking about other people’s lives and ignoring the “yuck” in your own. Makes sense, really, if you think about it.

That brings me to a concept that I think everyone needs to know. This is a Southernism (well, I think it is because I’m from the Dirty, dirty south) that applies universally to relationships and to people.

Don’t Poke the Bear.
This is a very simple concept. If you’re in the woods and you poke a bear, it will chase you and can kill you. Despite it looking cute and sweet and fun, you should not poke it. It will end badly for everyone involved.

When I am in pain to the point that I have put myself to bed to lie down, I’m sleeping because I can’t handle the pain. Sleep lets me escape it or at least laying in bed lets me kind of meditate it down to a tolerable level.

Sometimes, Adam (or another friend or family member) will crack the door to check on me, or come in and give me sweet kisses and want to talk to me, thus interrupting my sleep. Doing so can sometimes be detrimental to our relationship depending on the level of pain I’m in, how many times he’s checked on me, how much “crazy juice” I have in my system, and how sensitive that person is at the moment.

What’s damn near impossible for me to keep in mind, coming directly out of sleep or bio-feedback meditation is, “This person is trying to show me love and care” because all that floods my brain is broken concentration and the sudden jolt of all the pain coming back. It’s much harder when I have corticosteroids flowing through my body.

I don’t want to yell at someone I love for caring enough to check on me. That’s just rude and mean. But it happens, sometimes! I’m a human being, and they understand that. But when I’m in that sort of pain, I’m a bear. And they poked the sleeping bear.

Compassion, thankfully, with loved ones, can be an easy thing to come by. Forgiveness, however, is not always as simple. It’s a lot easier to explain to someone, when you’re lying down for one of those, “fuck my life I just need to sleep through this” moments to let everyone know to just leave you alone. That way, if they poke the bear, they know what they’re getting into.

Don’t get me wrong. I’m not advocating grouchiness – just trying to remind everyone that sometimes, for the person hurting, it’s equally important for us to be compassionate while we’re in pain by letting people know to leave us alone, but doing so kindly. It’s hard for those who love us deeply to watch us suffer, and if they realized that by kissing us, holding us, waking us up to remind us that despite our pain we are constantly loved, that they were forcing us back into the harder part, they wouldn’t do it. They want us to feel better, not worse, so try not to let yourself become resentful of their love before you communicate your needs to them. Odds are, they don’t realize how their affection has negatively affected you because it wasn’t their intent.

Like I said! MS is an HONORS COURSE in humanity! It’s not enough to be able to tolerate what wackiness goes on in your body. You have the opportunity to become a better human being, or to become bitter or lazy or just angry.

What I didn’t realize early on is that it’s an honors course for everyone who cares about you too.

My parents came in for the weekend to hang out with me and Adam and help out.

I am one very, very lucky girl. (With a longer post than expected and a late nurse! Oh well!) 🙂

Happy Saturday, everyone!

Another Master Lost — Rest in Peace, Henry Gaffney.

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Henry Gaffney was a brilliant man. He taught me Lyric Writing I and II at Berklee and even talked me into taking Songwriting I when I admitted to him my personal shame of not being able to transcribe music.

He told me that he thought I’d be making a terrible mistake if I didn’t get past that block because lyric writing comes so naturally to me.

And he’s dead. A man who could inspire a kind of joi de vivre in the most homesick, depressed freshman, simply by talking to that kid about how sharp the depths of that freshman’s pain must be and how the sound of the words the student uses should use should sound sharp and also hiss so that other people can feel the pain they’re trying to express in a song they’re writing about being alienated and alone.

I had such a crush on him. Not one of those “naughty professor” crushes, but I seriously thought he hung the moon… and if there were other classes that he taught that I could have taken without getting through more prerequisites, I would have taken them. But that’s the problem with school and life and learning… there are hoops you have to jump through to get to where you want to go– to get to spend time with the people you want to spend time with. And at the time, I thought I was going to be a multi-millionaire with AudioXtacy… which, only now seems like something that would be interesting to people.

I’ve been thinking about songwriting every day for months now. Some days I actually do it. But at least it’s a consistent thought. At least I’m consistently moving towards music. At least I consistently carry my memo pad around again. Henry would be proud of that. It’s because of him that I sleep with one next to me and carry one in my purse.

Thanks for believing in me while you were around, Henry. And thank you for never having class at 8:45 in the morning. Rest in Peace. You’ve earned it.

Henry’s Berklee Bio

2 posts in 1 day?! Is that even possible?

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I know what you’re thinking — 2 posts in one day?! Is that even possible?

Well, yes. Yes it is.

I’ve been quiet for a long time, and I’ve been thinking. Quite a bit, actually. Today, I’m feeling… well, posty.

Have you ever realized that every single person on this planet, and on every other planet, with every action he or she does or doesn’t take, could, in theory, create a different parallel universe or timeline? And that none of the other universes would be aware of each other?

Each person has significance in her time specifically as who she is by doing what she’s doing with what she’s doing it with precisely at that exact moment. Sure, sometimes little things don’t matter, but what’s little and what’s not little isn’t something that we know or that we can even perceive. What would have been significant is only recognizable if you can hop through parallel dimensions where, say, you’d worn a different dress or caught the bus that day, or whatever. I mean, think Sliding Doors or Back to the Future 2 but on an infinite level. AND leading scientists believe the universe is ever-expanding. *lol*

I’ve spent a lot of time over the last year or two very confused because of seizures. In these post-ictal states, I often felt like I’d hopped consciousness. Like I’d wake up thinking I was 12 or something. Out of time. Out of place. But I always somehow have the good fortune of coming back. Between the pervasive mythos of destiny throughout different cultures and this aforementioned plasticity of consciousness that has me convinced that any thought I have regarding ending my own life is entirely born out of chemicals not working right or extreme physical pain.

I want to know the cool stories that come out of my life. Killing myself would just spoil that possibility altogether.

I want to make sure that all my readers understand that. I know that my friends and my family, the people who know me best, know that deep down, I don’t want to die. I’ve got far too much appreciation for the good things that life has to offer, and there are too many amazing things left to experience.

When I talk about suicide on here, it’s because it’s far too easily glossed over IRL. I talk about it here because it’s a real thing that pops up in my head and if I don’t talk about it, I’m not giving my family, doctors, and friends the opportunities they deserve and I deserve to help me when I need it. I also feel like I’m not being true to the cause that I have put in motion with this blog — which is to show what it’s like to be living with MS + Seizure Disorder. I swear I’m not just being emo.

If I just couldn’t cope, that would be one thing, but that’s not the case. I am a coping MONSTER. Giant even. At one point, Amy called me the Grand Poobah of Rolling With It.

So I just wanted to make sure that everyone is clear about that, and I wanted to thank those of you who have been kind enough to offer conversation recently. Several of you have and I’ve been in and out of being okay with talking. Sometimes I’m cool, and sometimes I’m not — but please know that your wanting to talk to me means more than I can possibly express.

Thank you for caring about me.

Results. Thinking. Things.

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Well, the results from the February Bar Exam came back, and yours truly is still not licensed to practice law in the state of California.

I am okay with that, especially considering that my proctor woke me from a seizure in the middle of the exam and I was pretty heavily medicated during it. So, I’m 0 for 2. No biggie. Mayor V took it 4 times. Other friends have taken it more times and are attorneys right now. Really, it’s a matter of taking it until I pass, if I want to be an attorney — which, I’m not convinced I want to be at this point.

I’ve been considering my purpose a lot recently. This is, of course, what happens when you fight with yourself because of suicidal compulsion. Fortunately, since I stopped taking Gabapentin, I haven’t had *any* suicidal compulsion. I think this is incredibly important for Dr. G. to know.

In any event, I’ve decided that I prefer not to have a purpose and instead to simply live without purpose, but with the philosophy that the actions I take should ideally make me happy and lead towards a happier existence for the people I care about.

Because honestly, we cannot know for certain, with our limited ability to perceive the universe around us, whether or not there is a God or an afterlife, and if so, what that being’s desires are for us on a moment-to-moment basis. Even if we were able to do so, why would God’s desires be more valid or important than our own or those of the people who care for us or do good things for us?

I think that putting something as finite as “a” purpose on your life does you a disservice, as you may be here, in this city, on this planet, at this time, as you are, for an infinite number of reasons.

It’s when we feel our smallest, when our self-esteem is at its lowest that we search for THE REASON we are here, when really, there’s no way we can know, and, assuming that God exists in His omnipotence and omniscience, there are likely more reasons for each of us than we could possibly fathom, let alone understand or accept.

Furthermore, when I think about the people I love and the things they’ve either done or tried to do with their lives, I’ve never once actually cared whether or not they succeeded. I’ve cared whether or not they were happy doing what they were doing and whether or not they knew they were loved and supported.

I hated law school by week 3. Preparing for the bar exam makes me miserable. And really, the only time I’ve ever spent working at an attorney’s office, I was working at a family law firm… and it wasn’t the kind of work I’d want to do the rest of my life. When I was at a label, it *definitely* wasn’t the kind of work I wanted to to.

And here’s where I get REALLY smiley… I’m talking about me working. 🙂

That’s right… I’ve been doing better. LOTS better. As in no grand mal seizures in a month good. 🙂

I wish I could trust it.

So, I’m taking a break from making myself miserable in an effort to get a CA Bar card because it’s no longer making me happy, and I don’t think it’s going to make me happy any time soon. There’s no need to be Superwoman and have my physical challenges + the wedding planning + the bar exam.

When and if it’s time for me to become an attorney, I’ll rise to the occasion.

Right now, I’m just going to rise to the occasion of being me.

Personality Reconstruction

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So the whole point of me going to analysis was to work through all the lies I sold myself as I grew up because of the abuse that I went through at the hands of a childcare worker when I was young.

The idea, from what I understand, is to rebuild my personality. To learn to like myself. To learn how to trust certain people who truly deserve it (my folks, for example) and to interpret the world around me as it actually is and not through some horrible lens of… whatever.

Anyway, everyone else has always come first. I’ve always followed directions. I’ve always been good.

So what does this personality reconstruction mean? That I become a more selfish person, right? That I learn to like myself better. That I do things for myself without near-crippling guilt.

Well, today, I walked out of a doctor’s office, rudely, and didn’t pay. I was angry because I didn’t think that I got the care that I deserved, which means I felt like I actually deserved care.

That’s a step in the right direction, at least.

I’m tired of imploding. I’m tired of being sad.

FINALLY, I am angry, and it’s not at myself – at least not for anything besides waiting for so long.

This is my life, and I’m not doing anything but what I want to do anymore.

I chose the icon because it has a knife in it, not for the shallots.

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I just realized I have no “super pissed” icon userpic uploaded yet. I should fix that.

Today, I went to see Amy, my therapist of nearly 5 years, because I still haven’t started analysis (which she recommended strongly), and I have been having a rough go of things. I thought it might help to have a session. I was wrong. I was told that even if I paid her full fee each time, she would not be willing to help me with analysis or continue to work with me because she believes it would re-traumatize her. Essentially, she accepted me as an appointment, was about to happily take my money, and could offer me no assistance. I asked her how she could help and she asked me what insurance I had and she said she could pull up the site and help me find a new therapist. For $90/hr, I can do that on my own.

I walked out, and I didn’t pay. (Pay for what?) Then she left me a message on my cell phone talking about being worried that she needed to hospitalize me for suicidal behavior and that she needed me to contact her to promise that I wasn’t going to hurt myself, and then texted me the same, spelling my name wrong. I let her know that she needed worry, and that she spelled my name wrong. 5 years of spilling my guts and my darkest innermost thoughts and she can’t even spell my name.

I won’t be seeing her again.

Happy Mother’s Day.

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I love you, Mom.

Thank you for life.

Despite the struggles that I go through on a daily basis, I fight with every ounce of my being to keep going.

I appreciate the gift you and Dad gave me 29 years ago, and the support and love you still give me today, despite the fights we have here and there. The best way I know how to show it is to keep going, regardless of the challenges in front of me.

I’ll try to be kinder.

Thank You, Betty White.

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I am watching Betty White right now on Saturday Night Live, and realized that (at least as far as my generation goes), she is best known and loved for her comedy work as an older woman.

She reminded me of the future me that I want to be.

I cannot be an old, hilarious, kind-hearted grandmother who somehow knows how to take care of everything important and always has the best stories if I am dead. I have to live to get there.

Also, even though I know this is a bad place to type this, O.G. Kush 2 seems to be the only strain today that can get through to the lower back pain today. Not sure why, but sativas are no good against it. 3 Gabapentin, 2 tylenol, and 2 aleve to boot. Overall pain is very bad, apparently. Seeing it written out like that, it’s not awesome.

Pain does weird shit to me. It makes it seem okay to make suicide plans. Then again, thinking about what it would do to the people I love always stops me from doing it. But guilt… that’s no reason to live. Blue skies, sunshine, the beach, kittens, good food, sweet puppy dogs, music, all of that… I might trade any or all of them to end pain permanently. I’m so tired of it being a daily thing.

I think about death constantly. I try my best to make light of it to everyone like I’ve got it under control, and truth be told, I’m not currently cutting myself or running off to Mexico to procure barbiturates, so I must have it under control. But seriously, it’s like my brain is on suicide loop. There’s got to be a way to shut that bugger off.

I think one of the worst things for me right now is trying to communicate with family and friends and to try to have a life while I feel miserable. So trying to act normal while this loop in my brain is going “kill yourself” over and over again and my body feels like all kinds of freakin’ awful. It’s hard just to exist, let alone be considerate.

I want to do things and then I quite literally cannot move myself for hours… Whether it’s all in my mind or whatever, I don’t know. I sleep sometimes more than I’m awake in a day. I wonder why God made me. Adam says that asking why is looking backwards. I guess he’s right.

Thing is, if If I’m suicidal again and I can remember Betty White, I can remember that she affected my life as an old lady, and that I could imagine myself as an old woman, and that will help me.

Finding Worth.

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So, it’s been a while since I last posted. There’s a reason for that.

Somewhere along the line I got it in my head that I wasn’t helping anyone with this blog, and that, at worst, it was really just an exercise in narcissism, and at best, it served only to prove to me that I exist in some tangible way, and that my thoughts and experiences may or may not eventually become something worthwhile, like a book. Because books are valid publications that have the approval of others with money, and blogs, well, they’re just verbal vomit that others get to read for free.

I’ve realized the sad truth of the world that I’m living in… that I’ve learned that money = worth in the minds of the masses, and in the minds of most people. In the mind of me.

I guess that’s why when I filled out the forms to get out of my federal student loans stating that there’s no way for me to make money, and my doctor filled out the paperwork to go with it, as well as the paperwork for SSDI, saying that I am incapable of work to support myself, I started sinking in a way that I didn’t really know how to fight.

Over the last several weeks, I’ve received, for the first time in my life, letter after letter, asking me to explain, in detail, why I cannot work, what paid work I’ve done since being diagnosed with the seizure disorder… and every time that I fill one of those out, I get this horrible knot feeling in my throat and churning in my stomach.

I’m 29 years old, and I cannot work. My psychologist left me high and dry by saying analysis was really the only thing that could help me at this point, and none of these places that offer it is getting back with me. So for almost 2 months now, I’ve been going through this and wedding planning (which is an emotional fun time all of its own) all on my own. I think it’s time to find a new therapist, but I’m trying to get into analysis, which is getting a new therapist… but I think I am doing well on my own, all things considered.

I feel a lot better about the suicidal compulsion stuff I’ve had going on, because scientists have been able to track suicidal compulsion over EEG and notice beforehand. This suggests to me that it’s seizure related. In other words, not my fault. Not a personal failing of Rachael Renee. That’s why, despite the fact that I keep having thoughts about it this morning, I can shrug them off because I’m like, “whatever, seizure.” just like when my body ticks. It’s a lot easier for me to deal with. A whole lot less drama. It’s still annoying as all hell. I’d be lying if I said I was in a bright and shiny mood from it, but at least I can call it what it is, and medicate for seizures instead of going on some deep, psychological journey into why I would want to end my life.

Truth be told, I hate myself right now. I’ve always prided myself on being professional – since I was a kid even… professionalism is huge in music — and now, I am anything but. I feel like I’ve lost my identity entirely. There are a few spots in my life where I caught myself liking me, but then I’d get rejected or rebuked by someone I loved and find out I was wrong for liking myself. So that means that I’m only right for liking myself if someone else agrees. The really hilarious thing is that seeing that typed out makes me laugh. I mean, it’s ridiculous. How ridiculous is it to hate yourself? What a waste of personality. Why on Earth would God bother creating a Rachael Renee if she’s just supposed to do what everyone else likes and agrees with?

You know, all my life, everyone’s said “Be Yourself.” and I think I just got it. Because they say that when you’re young, and they don’t really mean it. They really want you to be good. I was good. But now that I’m worthless, there’s no reason that I shouldn’t dress like a weirdo in my own house and play electric guitar in the middle of the living room when I can, at whatever hour I want to, with or without headphones. But I’ll wear headphones when it’s night time because that’s the kind of person I am. A kind person.

And there’s no reason for my hair or makeup to be normal. I can Lady Gaga it up, but do it my way. I feel like I shoulda been doing it for my whole life. But I’m not brave enough to even do it alone. I have problems even practicing, to be honest. And I can lie and say that it sucks to hear myself sound bad, but the truth of the matter is that it’s a question of bravery. Am I willing to let myself learn a new instrument? If I learn a new instrument, does that mean I can earn money? What happens if I do? I don’t want to get in trouble for doing well.

I must be crazy. Look at me acting like I have enough energy or ability to get myself in trouble. Ha! Let’s worry about things as they come. I should TRY to get in trouble like that. Let’s HOPE for me to be doing well enough for me to have to pay back all my law school loans and not need SSDI!

At least I can have that hope now that I’m not having seizures all the time! They started disappearing while I was staying with Adam’s family in Worth, IL. (The irony of the name of the town just tickles me.) I had a lot of time to spend with his family and friends, and Adam and I went out and did a lot of things to plan for the wedding. But what I realized, when I came back to CA, is that being surrounded by family and friends was important and helpful to me feeling better. I feel lonely out here, comparatively. I know that I just need to contact friends though. I have to build a family. Adam’s family made me feel like one of them, and like they wanted me around. It was really nice.

*sigh* So what have I learned? To like myself I have to be able to earn money and receive validation from others. *knocks head on desk* That is the opposite of healthy thinking. I know the ideal is self-validation, and that worth can’t be measured in money alone. Why is it that you can know something logically and educationally, but your psyche can’t get it anyway? I wish I could talk with someone who had some answers for me… any kind of direction for me… but that’s just dodging more of the responsibilities of being an adult – hell, of being alive.

Really, I’d just settle for having someone to talk to, where the conversation isn’t how bad the economy sucks or the obligatory “So how are you feeling?” question. I wish no one ever asked me that question. I will almost always say “fine” unless I’m feeling real bad. The real answer is always the same: crappy. Varying degrees of crappy. Better than usual at the moment, but the devil disease still isn’t letting me go out at night and party. Best I can do is chill out on a couch and watch TV or play games, which to me, is actually a pretty good time with other people. I miss social interactions so badly.

Anyway, in that direction, and towards finding worth in my life, I chose to write today… and apparently, to write quite a bit. Thanks, those of you who have read. I don’t know how this could help anyone, but if I continue to get a bit better every day by being brutally honest with myself, and anyone gets to see my growth through this and it helps them, then that’s cool.

And if not, and it helps me, then that’s cool.

And if it doesn’t help anyone, and I’ve just wasted my entire morning, well, at least I felt, for a few hours, like maybe I was doing something that mattered, at least, for a little while.