My Real Hope: No Dairy, No Legumes, No Grains = No Shots

My copay for Copaxone this month is $539. That’s just the copayment, keep in mind. Copaxone is anything but an inexpensive medication.

Social Security gives me $643 a month to live on, so until and unless I get some assistance from Shared Solutions, I am without my DMD. I mean, while I could see what living on $104 for the month would be like, I doubt it’s the lifestyle that any of us wants me to become accustomed to.

Happily, I can report that being without Copaxone has not lead to any ill side effects. If anything, I feel better not having to give myself a shot every night before bed. The nightly “bee sting” is something I can happily do without, though I’m not sure how it’s affecting my brain chemistry to be completely honest.

One thing I’ve always hated about taking the drug is that it’s supposed to reduce the formation of new lesions and relapses by up to 40% – but you just have to trust em on that. You’re still gonna get new plaques and you’re still gonna have relapses. You’ll just have fewer. PROMISE. Just keep poking yourself with needles… *smirk*

It really does go to show how broken our system is, however. My monthly living stipend from the government doesn’t even cover the copay on my drugs, let alone the cost of the pharmaceutical copays + the cost of copays for my doctors visits that I need to go to just to keep me functional. And the government is the entity choosing the plans available through Medicare, so they know exactly how much I’m paying and why. You’d think that they would take those things under consideration. I mean, it’s not like you can fake multiple sclerosis or the seizure disorder I have. The lesions show up on the fMRI scans. The seizure activity shows on ictal spec and on EEG… so it’s not like I’m using government funds for lollipops and hookers. (I’m not in Congress! Sheesh!) Based on that, if I were doing the algorhythm for fund allocation, I would put something in the “Extra Help” fund for folks like me.

But that’s because I’m me, and I need extra help. πŸ™‚

Or do I? I mean, I am on this fantastic new diet… and Dr. Wahls hasn’t needed any DMDs for some time.

Maybe I’ll make myself some kale chips, meditate a little while they bake, and see if I can’t save myself and my country some money by attempting to control this disease with diet.

I mean, what’s the worst that could happen? I’m only gambling with my brain. I could do worse with Malort.

I absolutely love giving thanks.

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

This is the way that visits with family oughta be. πŸ™‚ 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. πŸ™‚ 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. πŸ™‚

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. πŸ™‚

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! πŸ™‚

All sorts of things!

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. πŸ™‚ And point to her as an argument for intelligent design. πŸ™‚

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. πŸ™‚

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. πŸ™‚ 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 by time for the holidays, along with the video of our first dance and some other goodies. πŸ™‚

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. πŸ™‚ 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! πŸ˜‰

bang. head. desk.

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.

Finding Worth.

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.

I think I’m finally getting back to myself, at least, a little.

Crazy as it might sound, I think I’m finally, just now, finally getting back to myself… recovering from the stress of the bar exam… from the 100% stopping of life but for the eat-sleep-study-worry-blog/waste-time-on-Facebook cycle.

I actually showered today instead of taking a bath!

I know that might not sound like much, but standing, for more than 10 minutes, in cool water versus laying in warm water is a big difference. It requires a lot more energy. And I had it in me today. πŸ™‚

Not only that, but yesterday I wrote a horribly bad song and ran to the other room to record it before I realized how bad it was and decided not to record it. BUT I DID NOT RIP UP THE LYRICS! So, there’s that. Progress. I’m beginning to get out of my own way there at least. I can show the song-o-the-day for March 12. πŸ™‚ I have yet to write one for March 13, but I’m confident I will write… something by the end of the day.

I know that my most pressing commitment at the moment that I’ve been neglecting has been the MS Walk. I haven’t done anything to really ask for donations or to bother people to join my team. Right now, I’m the team leader of a team of three. Now don’t get me wrong, we are an awesome team of three, but I really envisioned Cripplocalype 2010 being a great HOARDE of people. So I’m asking because I really want people to walk with me and have fun together, please, whether you can afford to contribute even 1 CENT of your own money – PLEASE, JOIN CRIPPLOCALYPSE 2010 AND HELP US BRING AN END TO MS!. I promise, there may be other teams, but none will make fun of themselves as hard as we will, and none will rock so hard. m/

Speaking of things that rock SO hard – few things are as fucking metal as weight-lifting. Starting this week, I’m getting back into using free weights after months and months of what can only be described as muscle atrophy. No matter how much it sucks, I’m going to try to use the same gumption I used every day to study in order to make myself exercise – because I know it’s something that I genuinely DO want to do, whether I feel like I want to do it or not. I mean, hey… it’s worked out so far, right?

This week is looking like it’s going to be good. I’ve got lunches set up with friends. I’m trying to do things. I’m trying to always be better and do more – whether or not it messes with SSDI. I want to be better. Better is always the objective. Better is the best possible thing. And I’ve been feeling pretty good. I just wish it were good enough to be really looking forward to the board game night tonight. It’s only 6 pm right now and I’m so ready to go to bed.

Oh well! I could sleep all day anyway. Do I take another 5 hr energy or do I go for a Red Bull? Believe it or not, one is actually more healthy than the other here. *lol* Last 5 hr energy I had was at 10 am.

Talk about resistance.

All that it takes for me to get rid of the majority of my student loan debt, is to print out this form and get the my doctors (who are being contacted about SSDI stuff anyway) to help me here. It will be no shock to them to have this form there. It will require no additional information than that which they will already have gathered for Social Security.

But it freaking makes me feel awful to read the line “Diagnosis/explanation of the borrower’s present medical condition (identify the borrower’s condition and explain how it prevents the borrower from working and earning money in any capacity).”

…in any capacity.

*sigh* any.

There is a part of me that rages angrily against that. It’s the same part that writes this blog, I think. And the same part that pushed me to take the bar exam. Twice. The same part that believes there will be a cure sometime soon for MS.

But it doesn’t stop the pain in my wrists or my ankles or knees. It doesn’t un-numb the left side of my chest. It doesn’t keep me from falling over from seizures or from a sudden lack of feeling in my feet.

And somehow, my sense of self-worth is so tied up in the ability to make money that even though I know the Social Security office will be contacting all my doctors for the purposes of determining a claim for SSDI, I am hesitant to ask them to help me with this.

Making money… making businesses… It’s been such a part of my life before.

And now, this is something I never comprehended. Now, because there’s no way that I can work at the moment, I’m asking my doctors to tell the government that I won’t ever be able to do it again.

*I* have to be the one to ask them.

I don’t want to admit the loss of that part of myself. It feels like a punishment already having to endure it.

But what’s one more humbling event, right? At least this one acts to cancel debts I cannot pay. At least I know I’m helping my family.

In it fo’ tha pennies too.

Well, it’s official. As of March 1st, 2010, I have swallowed my pride and admitted that I need the system’s help.

That’s right, boys and girls. I applied for Social Security Disability Insurance (SSDI) today.

Now, I know what you’re thinking: I haven’t worked long enough. Well, I’m under 30, so there are some different rules. There’s a chance I could get it.

I also need to apply for SSI and food stamps. But I can’t do that today because it’s too late in the day already. I’ll have to jump on that gravy train to survivable poverty tomorrow.

But don’t let that make you think I’m being pessimistic. I know that Vimprat’s out on the market now and that there’s a snowball’s chance in hell that it could work on controlling my seizures. So who knows. I mean, I did apply for a job that reads like my dream-job today…

…the job I hope I’ll have