Science is so supercool!

Have you checked out 23 and me?

Right now, for $99 (and $9 a month to continue to get the Personal Genome Service updates), you can find out your carrier status for 24 diseases, your disease risk for 98 others (MS included!), your responsiveness to 19 drugs, and 49 genetically inherited traits: including whether or not you’re carrying the gene for male pattern baldness!

Heck, they’ll even hook you up with your extended family that you didn’t know you had, so long as they’re also 23 and me members. (You know you’re related when the genes say so!)

It also gives you an opportunity to give more info to your doctors, and to help research along the way.

So, for a complete cost of just under $220, you get an awful lot of potentially useful information about yourself. I think it’s something I’d like to do and have Adam do before we start trying for a baby. Why not see what our 2 DNA samples have going for them before we smack em together?

And yeah. You read the b word. Don’t get too excited. It’s a ways off. πŸ™‚ I’d have to come off my seizure meds, my antidepressants, and Copaxone… But motherhood is definitely visible in the distance.

It’s all about using your tools.

Well howdy, party people!

I got an email this morning from Teva Pharmaceuticals letting me know about the launch of their website for Shared Solutions.

Now, I am a BIG fan of Shared Solutions for several reasons, not least of which is the fact that they have taken care of me by immediately accepting me into their copay assistance program from the beginning when I started using Copaxone in 2006, when I was first diagnosed with MS. I tell you this because I am of the opinion that it is always important to be up front about these things when you are writing to an audience, not because I think that the work that they do is any less valuable or important to our MS community.

They have a wonderful tool called the More Solutions Planner on their website that can be used by anyone! It doesn’t matter if you have MS or not (but it helps! – The injection planner probably wouldn’t be as useful for those of you who aren’t injecting meds.) This planner helps by letting you set up optional reminders for medications, ordering refills of those medications, keeping your health insurance current, and giving you reminders about your doctor’s appointments and any other appointments you choose to put in there.

Prior to this, I had been using Google Calendar to do something very similar, but I hadn’t included a “where I injected” thingamabober or a “how am I feeling” part of it, so this gives me an opportunity to track my health at the same time as keeping up my planner. It sort of takes the health and community upkeep of Patients Like Me and mixes it with the organizational convenience of a calendar program. And anything that makes self-care easier and more efficient is good in my book.

To that end, I’ve created a tool to help myself and others with some basic self-care needs.

One of the things I’ve been having a very hard time with, thanks to a mixture of crushing depression and cog-fog is remembering to do the basics. And I mean the very basics, like brushing my teeth and showering for days. Sometimes, just having a self-care chart to tell you what needs to be done, and that you can put a sticker or a checkmark in after you’ve done them, helps you to stay on track. I mean, it’s one thing to think, “Eh, who cares if I brush my teeth.” for one day. It’s quite another to go several. With a self-care chart, you can see how many days you’ve gone as well as how much better you’ve gotten if you started back after you’ve fallen off track. That, and it gives you an excuse to use stickers! Hooray for stars and smiley faces!

I’ve uploaded em to my server – the pdfs look sideways because they’re landscape format. Once you print them, they’re good to go. I kept the spreadsheet in an open database file so you can edit it using a program other than excel if you want to edit it. It’s just pre-populated with my stuff. So, if you want to follow my routine, you don’t have to change a thing. πŸ™‚

Self-Care Awesomeness Chart – In Black & White
Self-Care Awesomeness Chart – In Color
Self-Care Awesomeness Chart in Open Database Format

Because sometimes, even grown-ups need to be able to take it back to nothin. And there ain’t no shame in that game.

We all fall down. It’s how we conduct ourselves when we’re gettin back up that makes all the difference.

I hope I’ve made it a little easier for any of you all to stand on your own when it’s hard. Scrounging for the little bits of what make us human can be tough sometimes. ❀

Where have I heard that before…?

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


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

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

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

It’s been a while.

Hi there.

There’s been a bit of radio silence, and that’s not an accident.

I’m coming to realize that there’s a whole part of myself that I don’t understand. Maybe I can’t understand it. Maybe I don’t *want* to because it scares me too much.

Yesterday was a bad day for me.

And I can’t blame it on any new drug.

But there I was, once again, a crying mess, on the floor of the bathroom, in the dark, desperately trying to figure out what way I was going to kill myself. I was actually wondering what the quickest, cleanest way to go would be for the convenience of my family. I’m not even interested in my old plan of going somewhere like a hotel anymore. I wasn’t even concerned about the most painless way to go. Just the fastest and cleanest.

The level of physical pain that comes and goes is so severe now that I don’t feel Copaxone shots anymore. Those alone used to make me cry. Now, I barely feel pressure as the needle goes in.

It’s almost a given that I will be hurting at bedtime. Sure, the medical marijuana helps, but it doesn’t get rid of it. It really helps quiet the “freak out” behind it. Because for some reason pain makes you freak out. It turns you into something you think you’re not… but apparently, you are.

I kind of loathe Rae + pain. She can be cold and mean and unnecessarily judgmental. And apparently she smacks people when they don’t listen repeatedly. “Leave me alone,” *means* “Leave me alone and don’t touch me” when you’re dealing with a crying, shaking, out-of-sorts, not-in-her-right-mind Rachael Renee, just in case anyone’s wondering.

I try to be a nicer, kinder, more creative, fun person. More me. But pain really sucks my will to live. It sucks my essence right out of me.

And the worst part is that I don’t even fully trust that it’s all caused by MS. I mean, yes this is MS… but I think this is being exacerbated by chronic stress.

The body doesn’t distinguish between physical and psychological threats. When you’re stressed over a busy schedule, an argument with a friend, a traffic jam, or a mountain of bills, your body reacts just as strongly as if you were facing a life-or-death situation. If you have a lot of responsibilities and worries, your emergency stress response may be β€œon” most of the time. The more your body’s stress system is activated, the easier it is to trip and the harder it is to shut off.

From: http://www.helpguide.org/mental/stress_signs.htm

I don’t remember the last time something ZOMG-STRESSFUL wasn’t happening in my life. Divorce. Move to CA. Law School. Add MS to the mix. Preparing for Bar Exam. POOF Seizure Disorder. Preparing for Bar Exam Again. Fail. Prepare for Bar Exam Again. Fail. Planning My Wedding. Best In-town Girlfriend of 5 Years Dumps Me For *No* Good Reason And Drops Out Of The Bridal Party, Still Waiting on SSDI, and Adam’s Still Part of America’s 9.5% Unemployed…

I mean, I’m getting married, and life is good… We have our needs taken care of. We have a roof over our heads. We have food to eat. We have all the creature comforts we need. I have *no* reason to be suicidal. And yet I am *wickedly* depressed and can’t stop absolutely obsessing about how I think I’m not good enough. How I’m not earning money, how I’m not an attorney even though I’m not sure I want to be one because I think I only want to pass the test now because I couldn’t before (It’s like I have to prove something to myself.), how I talk about making music but can’t seem to get anything out, how fat I am, and how ugly I feel.

I feel like the meanest, grumpiest, nastiest, most awful burden that ever walked the earth, and despite how much love is showered on me, it makes no sense to me because I’m physically hurting so badly, and I think, even though I *logically know better* that somehow I deserve it because I’m that much of a worthless piece of shit.

So I spend every day of my life, fighting like mad just to keep a positive attitude. Just to be a normal person. Just to make choices that will bring me back to happiness.

I make myself shower at least every 3-4 days now. It’s better than I was doing. It’s easier to do now that I have a shower chair. I’m brushing my teeth every day again. Hell, I’ve even brought back out my “cue cards for life” that I made myself at one point. I’m reading them every morning.

But something’s gotta give.

I had an MRI last Friday of my lower lumbar region, and I have an appointment on Tuesday with my pain specialist. I hope so much that there’s something they can do.

I can’t keep going on like this.

CCSVI – Chronic Cerebrospinal Venous Insufficiency

It’s been a long time since I said that I was going to make a post, or a series of posts about CCSVI. I started this post way back when I was on an oral medrol pack right now and was going through a ridiculously loooong relapse, I can promise, that I will do my best to link to each source that I got information from, and that I will do my best to explain things to the best of my understanding.

So! First and foremost, the big question:

What exactly is CCSVI, or Chronic Cerebrospinal Venous Insufficiency?
To put it plainly, in people who suffer from CCSVI, the veins responsible for getting blood to flow properly away from the brain and spine are not doing their job. They are, as the title of the condition says, insufficient in their current state. They’re either too small, not there, twisted up and needing to be ballooned out, or they have some other problem.

That sounds like a circulatory system problem. What does CCSVI have to do with multiple sclerosis?
Ah! Now there’s where the story gets both romantic and convoluted.

Dr. Zamboni, the brilliant man who discovered this issue, did so when he was seeking a cure and/or treatment for multiple sclerosis because his wife suffers from it. It’s a totally sweet story, and Canada’s TV5 does the best job of giving you the public interest sappy telling of it, as well as having fantastic TV quality explanations about what CCSVI is.

Check out Canada’s TV5 and their coverage of Dr. Zamboni’s discovery. It’s like watching Dateline or 60 Minutes for those of us who are only used to American network TV. It’ll explain things much more thoroughly than I ever will. I’m a much bigger fan of the brass tacks "What really matters" to friends/family style of explanation.

CCSVI is hypothesized to be the cause of MS.
AND it’s a congenital defect. This means I was born this way, and my body adapted. Dr. Zamboni and the doctors whose research follows his believe that the immune response (MS) to the reflux of blood in the brain and the deposits of heavy metals is that adaptation.

So, what exactly is the Liberation Treatment, then?
Angioplasty, plain and simple, just like they do day in and day out for people who have heart attacks. Only difference: It’s for veins. Crazy thought: Allow proper blood drainage from the brain, perhaps the metals will be removed, and some of the function will return or problems will abate. Not surprisingly, it seems to work.

Unfortunately, sometimes it has to be done more than once because the veins don’t always stay open.

Will it CURE your MS?
No. It is not a cure.

It simply means that my brain will be able to receive and release blood flow normally, as it ought to be able to.

The Liberation Treatment is a treatment for CCSVI. It just happens to make symptoms of MS better. Go figure, you help the brain, problems that happen because of the brain get better. (This is not rocket science.)

I will still need Copaxone to help with my current lesions and to help fight off future lesions. My immune system will still try to eat my nervous system. I will still HAVE multiple sclerosis, but I probably will not hurt as much or as often. 100% of patients who have received the surgery have had more energy and clearer thinking. I might get feeling back in part of my left chest and side. That would be cool. Who knows, it might even help with some of the seizures. It’s helped others.

But is it safe? This is your life we’re talking about…
This is Dr. Salvi (a pro CCSVI-treatment neurologist) from Italy, talking at a conference two weeks ago. Vince, a fellow MS sufferer who is a member of the same CCSVI group as me on Facebook kindly translated the Italian of this video for those of us in the group who wanted to watch it.

Read Below for the translation – the video is in Italian but has English Powerpoint Slides to view.

Dr. Salvi:

      "What interests me, since there has been a lot of bull in these matters, there have been people fabricating things that have never happened. This procedure is simple and well tolerated. Whoever says there has been a death in Italy is a total idiot, (applause,someone holding sign "liberate us") and also people saying its dangerous. I personally have brought a lot of patients to undergo the procedure, and really, come and see for yourself, simple, next.

      "This is the population of the first studies (in yellow). And the most important thing, I always say, and another accusation we have been getting is that we take away the therapies from everyone. We are idiots for performing these procedures, while the only thing patients need is these therapies, and accused us as outsiders.

      "We have not taken therapies away from anyone. We have not taken away any traditional therapies from no one. These are stents, the famous stent they have accused us of putting everywhere and to be the cause of death. There has been one death in the world that had a stent put in, but her death had nothing to do with the stent. We do not have stents for the jugular, so we do not reccomend them."

This is all I can do for now. I’ll put more CCSVI and MS info up later, but I hope this is helpful for anyone out there other than me. I think this is a good start towards improvement for all of us.

.

I just don’t even know.

There are times, like today, where I just don’t even know what to do with myself.

I get these emails from Berklee with job opportunities and things going on and I think to myself, “MY GOD! I BELONG HERE! I WANT TO DO ***THAT***!!!” and then I wake up and smell the armpit and realize that I still haven’t showered in 4 days and that my hair only looks halfway decent because I got it colored professionally today, and that my body decided to crap out on me in the middle of the day today. I did parts 1 and 2 today with a 3 hour nap in between. I can’t keep trying to convince myself to have a normal job.

And then I’m pissed about the National MS Society thing on one hand, and on the other, I get it — they want to protect their jobs and their families. I compassionately understand. It just still makes me angry that rather than wanting to treat what is so obviously a problem, they are trying to not only ignore it, but to stop it from getting treated at all.

If we didn’t have MS to begin with, and they just happened to notice that these people had vein blockage, there would be no debate about treating this condition. We would be taken care of. But because we happen to have MS, they are debating whether or not we ought to have these vein blockages cared for. It’s absolutely inane. There’s no question whether or not it’s good or bad for a human to allow iron to build within the brain. It’s not good. We shouldn’t allow it.

Does it cause MS? Is it THE CAUSE of MS? Maybe. Maybe not. Frankly, I don’t give a shit.

What I *do* care about is this:

1.) Because thus far it’s been shown that something like 90% of the patients with MS who have been scanned have this vein blockage, I am curious to see if I too have this vein blockage.

2.) If I have this vein blockage, I want it unblocked. I don’t give a good goddamn whether or not the National Multiple Sclerosis Society or Neurology Today or someone’s great grandpappy says it’s okay by American medical hooohaw.

If my brain isn’t working properly because it’s not draining blood properly and (1) we can show this on current technology, and (2) it can be FIXED by current technology, there is no convincing reason to leave a problem like this alone, to continue to get worse. It just makes no medical sense.

It doesn’t mean I’m not going to keep taking my MS meds like a good girl. It doesn’t mean I’m not going to still need my Copaxone to heal up the lesion areas or act like mylin.

It means my brain will be able to get blood and get rid of blood properly. If you ask me, it has jack shit to do with multiple sclerosis.

I don’t think I’m being unreasonable about this. If I were, I would hope that someone, like my newly doctor-ed father would tell me.

Readers, what do you think? Am I thinking about this wrong?

Full of Win or Full of Fail, You Decide.

Wow, today has a lot of ups and downs for those of us with MS. Since I like to end on an up note, I’m going to start with the really shitty:

The National Multiple Sclerosis Society is spending our money on studies about CCSVI designed specifically to prove that there is no such thing, and that helping us have better blood flow to and from our brains won’t help us be healthier or feel better. They are using the money that we raised for them, for our health and wellbeing to conduct studies in the hopes of proving that even if our veins are blocked by 90%, unblocking them will have no effect on us.

Here’s the “links or it didn’t happen proof.”

Pretty awesome, huh?

On the potentially upside, the FDA has voted to approve Gilenia, the first oral MS drug. Gilena is, of course, the marketing name that was given to Fingolimod.

I first started following fingolimod in December of 2008. Anyway, after several years of following friends who are on it on Patients Like Me, Facebook, and also on the blog that I linked to on the prior post, I am avidly and happily awaiting the release of Gilena. It means no more needles and no more sore injection spots! Unfortunately, I’ll be more susceptible to infection, but that just means that I need to be more cleanly. Considering MS happens because of an overactive immune system, worse things have been known to happen. (Then again, what if MS is a vein disease?) I will stay on Copaxone until Anthem/Blue Cross ads it to their formulary.

I wonder how often they update that thing.

Way to go Anthem Blue Cross! Adjusting my rate by 29.9%

Got it in the mail today.

Rate change effective March 1, 2010
While we strive to keep costs as low as possible, it is necessary to adjust our rates to cover the escalating cost of health care. As of March 1, 2010, the monthly rate on your HMO Saver will change from $329.00 to $427.00. Anthem Blue Cross will usually adjust rates every 12 months; however, we may adjust more frequently in accordance with the terms of your health benefit plan.

——-

Now, please excuse me for a moment while I ask the insurance company where they expect the policy holder with multiple sclerosis and seizure disorder to come up with another hundred bucks a month… assholes.

Thing is, they don’t. They REALLY want to drop me. *lol*

See, this is something that most people wouldn’t notice, I don’t think, but that going to law school has done for me. It taught me how to look at the world through my Genuine, Certified “So-This-Is-How-They-Screw-You” Lawyer GogglesTM. And the second that I saw that my premium didn’t jump a nice neat $100, but rather $98, I knew something was up. (Who ends a number in a 7? Honestly?!) It bugged me. So I decided to figure out what percentage we were looking at. Sure enough, 29.9%. You know what that means, boys and girls? It means they’re not allowed to raise my premium by 30% or more. There’s a rule, somewhere, saying they can’t. They’re raising it as much as they can.

It is rules like this that we need more of.

When I talk about healthcare reform, I am talking about making more rules like this. Maybe Insurance reform is more what is important to me. I dunno.

It seems crazy to me that the amount of money it costs for my healthcare per year is more than I have made per year.

I mean, let’s do the math –

Monthly Insurance Premium: $427
Topamax (copay): $30
Cymbalta(copay): $30
Seasonale (copay): $30
Lisinopril/HCTZ (copay): $10
Gabapentin (copay): $10
Herbal Meds: $50
Psychologyist for therapy – One Visit:$90
Psychiatrist, monthly visit: $10
One visit to a doctor if I feel sick: $10
Total before Copaxone even comes into the picture: $697

Copaxone would be $780 (and that’s the 30% copay) if I weren’t incredibly lucky and having my copay taken care of by Shared Solution’s copay assistance program.

If I didn’t have Shared Solutions’ help, it would cost me $1477 before I even started thinking about things like rent, food, or utilities.

That blows my mind. Lets add to that my student loans. How the hell am I supposed to conquer THAT?

I am NOT a stupid individual, nor am I lazy. I have a bachelor of music in music business from Berklee College of Music. I have a juris doctor from Southwestern University. I am 29 years old. But even my best job didn’t pay me enough to do everything up there and take care of all my needs.

Anthem is counting on that.

This company that is supposed to exist to help people is trying to bully me out of my policy by making it too expensive to have the good coverage that I found through them in the first place before we discovered that I was ill.

Well, guess what, Anthem Blue Cross?

You can’t bully me.

I will always find a way to keep my ass covered, and if I can’t do it, my crazyass awesome family and friends will. Because that’s what we do for each other.

Now THAT is more like it!

Up before the alarm by, like, 5 minutes.

Dog fed, watered, walked, and played with.

Already gave a phone interview regarding life with MS and seizure disorder that started as a survey of how I felt about my experience calling Shared Solutions. Suggested to the Teva representative that they throw some money at CCSVI research because I think that Copaxone and CCSVI treatments are not competing goods, but complimentary science that should be studied together. While I was at it, I volunteered to be a patient. *lol*

And it’s only 8:30 a.m.!

If he hadn’t told me he had a headache when I woke up an hour ago, I’d surprise Adam with breakfast in bed.

Instead, I’m going to drink a Mix1 and organize my stuff for today’s Real Property Funfest.

I said it on Facebook, and I’ll say it here too, for posterity’s sake: For the next 48 hours, I don’t care what the book says… I own Blackacre, with my awesome powers of ROCK. There are 5 covenants of title in every general warranty deed, and there should be a black metal song about that. It’s already in my punkin head. *lol*

Don’t make promises you can’t keep.

That subject line right there — that’s a warning to all you good folks out there as much as it is a reminder to me.

See, in my last post, I promised a better entry “tomorrow.” Well, “tomorrow” is now “yesterday” and, as you can see, there was no entry yesterday. I was too busy studying for the bar exam, a test full of fact patterns comprised of people making promises they didn’t keep.

And I probably should continue studying for that test right now.

Oh fart. There’s that word again. “Should.”

I will not “should” on myself this season. As soon as you start with the “I should be studying” talk, that’s when the unbearable mountain of stress starts.

Well, I will have none of that. I either will or will not study, and I either will or will not be prepared come test time. I prefer “will.” That’s why I started studying at 7 a.m., and why it’s reasonable that at 7:53 p.m., my brain is screaming “FOR GOD’S SAKE, NO MORE, WOMAN!!!”

I suppose there’s only so much information one can retain in a day anyway. I’ve certainly put in 8-10 full hours of work today. Since I haven’t eaten dinner, and I have work tomorrow morning, it probably wouldn’t be so bad to stop for now.

The thing about me and prepping for the exam is that I get absolutely obsessed and I never feel like I’m doing enough. I tend to get really down on myself, and I don’t cut my body any slack. I accidentally undernourish myself by forgetting to eat and drink. I get crabby with myself when I have seizures, and heaven help me if I need to take a nap! That’s almost a personal failure. And when I am smart enough to put alarms on my phone (like to take my pills), I somehow manage to work through them without hearing the alarms go off. I’m like a woman possessed!

Like today, once again, I forgot to call Shared Solutions to find out if they’re willing to help with my copay for Copaxone this year. I’m down to 1 week’s worth of medicine, which is frightening.

Again, I forgot to call Dr. Giesser’s office to schedule an appointment. I’m rich with MRIs and have no appointment. It’s ridiculous.

I had a small breakfast at 9:30 am and then forgot to eat lunch til 4:30 – and I just realized that Adam put up a bowl of soup for me before he went to Writer’s Group nearly an hour ago… and I forgot it was in the microwave because I was too busy doing multiple choice questions.

ALRIGHT! Let’s turn this around and look at things in a better light.

  • Obviously, I’m motivated! πŸ™‚
  • I’m feeling better, or I wouldn’t be able to do this. (Triple hip hooray for that!)
  • Taking 3mg of Melatonin at night seems to be helping IMMENSELY in the restful sleep department too, without adding any kind of unknown pharmaceutical to the mix. Big thumbs up there.
  • Adam is awesome, and he made me easily reheatable soup, which is still/already in the microwave. Easy fix. Easy dinner. Almost already ready already. πŸ™‚
  • At least I’m upset with myself over the right things this time – like not taking care of my body from the get go, as opposed to berating myself for not knowing everything perfectly yet! I’m actually glad I fucked up so much on my MBEs today. Bad days on multiple choice now mean good grades later! That’s what studying is for!

As for health, today’s been great. I’ve only had 1 *real* seizure and a few brain farts. Haven’t been this good in I don’t know how long.

I’m sure part of it is due to working out on the Wii Fit. πŸ™‚ I’m so glad I have something where I can work out for 2-5 minutes at a time, and fall back on the couch if I need to. I’d gift one of these to everyone with MS if I could. The balance games and yoga help me so much! Heck, even just the one where you do deep breathing and have to stay balanced while you breathe is helpful, believe it or not. Yeah, you read that right. The Wii Fit is helping me learn how to stand and breathe better.

Yes, there is a “better.” And I’m getting there. And not just because I sometimes need to be reminded to breathe… πŸ™‚ Sometimes I also have to be reminded to eat and take my nighttime medicine, but not right now. Right now, I can do it all by myself. πŸ˜‰