In It For The Parking

Wii Did It!

2009-12-29T03:17:39Z

Adam really wanted a Wii. Apparently, he's been wanting one since it came out, and the fact that I suddenly wanted one even a little was enough to put it over the edge. (Who knew?)

When we realized 1.) that it would increase the percentage of all of the Amazon purchases made through me for the month considerably (to the point that the New Super Mario Brothers game would essentially pay for itself), 2.) that I remembered that we can download and play 2 player Dr. Mario, and 3.) that it also means we get to play games online with friends all over the world, my resistance to purchase the thing that would make me happiest was broken.

Sure, the bed makes more sense in the, you-spend-1/3rd-of-your-life-in-it way. But we also would have had to buy sheets and a new blanket and all that. Right now, we have a very comfy setup, even if it is small.

As for the couch, we didn't blow our entire wad, and I have some ideas on how to comfy it up... involving pillows and memory foam.

SO! WHO'S GOT A WII AND WANTS TO PLAY GAMES WITH ME? :-D

"To Wii, Or Not To Wii?" - That Is The Question

2009-12-29T00:40:13Z

For my birthday, Chanukkah, and Adam's Christmas present, all wrapped into one, my parents have given us a sum of money, so that we could either get a new couch (ours is getting worn out) or a new bed (2 adults sleeping together on a full sized mattress is doable, and not uncomfortable, but also not spacious).

But then, this weekend, I spent a good deal of time playing around with my parents new Wii and the Wii Fit balance board, and I got this crazy idea in my head about getting one for us so we could play games and have fun and get fit too, and even play games with my folks over the internet on their Wii. The best part is, working on my balance and doing games on the Wii Fit balance board would really be the kind of stuff to help me out with MS-related balance problems too, and give me and Adam a constant way to have fun new ways to work out at home - not to mention all the fun games we could play that have nothing to do with working out.

I asked Mom and Dad how they would feel if we used the money to get a Wii and Wii Fit instead, and they said, "It's your birthday/Chanukkah/Christmas money! Do what you want with it!"

And yes, I do realize if we get the Wii, we'll be sitting on the worn out couch to play it...

Don't get me wrong. This is half Adam's decision too, but before this weekend, I was all about getting a new couch. And now I might want a video game system. And I might be using MS to justify it to myself. *lol* Messed up, but true.

Edit: Also, if I buy the Wii and all the games through Amazon, I'll get money back, since I'm an affilliate - so I essentially get 10% back.

What do you think makes the most sense?

View Poll: Bed, Couch, or Wii?

This is what happens when I'm up late...

2009-12-24T08:21:07Z

I filled out the volunteer questionnaire for the Combined Transcranial and Extracranial Venous Doppler (CTEVD) Evaluation in MS and related Diseases study in Buffalo, NY.

The main goal of the CTEVD study is to investigate the prevalence (frequency) of CCSVI in patients with multiple sclerosis (MS) when compared to healthy controls (HC) and controls with other neurological disorders (OND). Another important aim of the CTEVD study is to investigate the relationship between CCSVI and clinical, magnetic resonance imaging (MRI) and environmental-genetic outcomes in MS patients, HC, and controls with OND.

There are no treatment interventions planned in this study. The study procedures include doppler/ultrasound testing, blood collection, a clinical examination and completion of an Environmental Questionnaire. Interested participants can also have an MRI performed. A subset of these individuals with also have an MRI of the neck veins.

Setting the bar too high?

2009-12-24T07:45:43Z

Just a quick note to let everyone know I haven't dropped off the face of the planet.

I have a part-time job on Tuesdays and Fridays, but this week, I worked on Wednesday too. I've got a little bit of a head cold, and I haven't really had time to think enough for a good entry.

I keep thinking about taking the bar exam again in February. But it's a bad idea. But if I don't do it now, I have to take the MPRE again, if I want my license. It makes it that much more unlikely that I'll ever be an attorney because taking the Bar Exam is bad enough, but having to retake that test too is just ridiculous.

The moment I felt healthy again, I wanted to take the Bar Exam again, and I thought I could do it. The moment I got a head cold and felt unhealthy again, I thought I'd be ok, but wasn't sure - then the MS symptoms kicked in, and I thought there was no way.

I mean, do I really want to try to take the test again in February while keeping a part-time job as a file clerk? How much of a superwoman do I have to be? What am I trying to prove? Is it that I can pass any test? Is it that I'm worthy to be an attorney? I don't need a license to work with production companies or musicians doing the kind of work I want to do. I can be a manager or an agent or any other number of intermediaries. I just worked so hard for it. I want to see it through.

That's just IT though... I *DID* see it through. I *TOOK* the test. For me, that *WAS* seeing it through. I spent 3 years working hard and I earned the J.D. That was my goal, and I did it. I wasn't even sure if I was going to take the bar exam, but I decided to. Then I got hospitalized. TAKING THE TEST WAS THE GOAL, AND THE GOAL WAS COMPLETED!

If I'm honest with myself, I'm struggling at work right now. I had a HARD day today, and all I did was work on contacts and file things for 5 hours. My body is weak. My mind is slower than it used to be.

Is it that I won't accept that I have limitations? Do I just like making myself miserable? Or do I really think I'm going to end up being one of those people who helps set up contracts for a movie or two or three and can afford to buy a house and send her kids to college?

IT'S WORTH THE WORK IF MY BODY WILL COOPERATE!!!

I just need to be as well as I was when I was in law school. And, in theory, this is just a stupid headcold. These zinc losenges should take care of it. I wouldn't have quit law school because I got a headcold. If I can commit myself to 2 months of working on stuff I don't like, I can have the future I worked hard towards for 4 years still. The only things standing in the way right now are fear about my health and my inadequacies, and my health and my inadequacies.

*takes a deep breath*

Thanks again, journal. You've helped me once again realize that I am more disabled by fear than I am by multiple sclerosis.

I'd be foolish not to give it another shot in February. If I could do it before, I definitely can do it again. I just need to find a way to manage the stress better this time.

It's my birthday! I just want to CELEBRATE!

2009-12-22T00:20:47Z

So true! So true. Since it turned midnight last night, I've practically been shaking my booty in my pj pants, I'm so excited to be 29 years old.

Now, technically, I shouldn't have been excited until around morning-time, but I don't care. The 21st is the 21st. If it's close enough for public record, it's close enough for jazz... and that's close enough for me.

I BEAT 28. HA!

Now, those of you who know me really well will know that the "Ha!" just there was punctuated and created specifically to look like David Tennant's version of The Doctor from BBC's Doctor Who. And I guess those of you who don't know me really well will now know that too. :)

I love Doctor Who. There are people out there who don't love the show, and who will talk about the massive plot holes and its detractors, and I can *fully* appreciate where they are coming from, but I love the program. Specifically, I like it because regardless of its preachy nature (yes, I can admit that it's got more than a little bit of a self-righteous science vs. God bent) it constantly pounds home the following ideas:

Almost any problem can be solved if you stop panicking and use your resources and your brain.
No matter how much we may like it to be otherwise, each of us has a unique place in time and space, and that cannot be changed.
The length of a life cannot begin to measure the impact it has on the future, not for a family, a community, or even the whole of creation

Now, don't get me wrong. I'm no BBC advert over here. I just was thinking about the most recent episode earlier today. The next one comes out on Christmas. Adam got a new episode on his birthday, and I think I'm just jealous. :)

By the way - this is SO not the entry I set out to write. Maybe that one will come later. I guess that's what happens sometimes.

Or Fork? Diets...

2009-12-21T06:28:41Z

Okay, so before, I jumped on the Swank thing because Dr. Swank had talked about the veins narrowing back in the 1950s... but I didn't take the time to go through all the different diets out there that are supposed to help people with multiple sclerosis to figure out which one is right for me.

I'm in love with http://www.direct-ms.org/ right now, just for existing. I could seriously hug the people who have put so much hard work into the site. Especially the http://www.direct-ms.org/recommendations.html

So - here are the options of what's out there. This is what I'm lookin at.

The Swank Diet, which is very simple, and thus is the front-runner:

Saturated fat should not exceed 15 grams per day.
Unsaturated fat (oils) should be kept to 20-50 grams per day.
No red meat for the first year. After the first year, 3 oz. of red meat is allowed once per week.
Dairy products must contain 1% or less butterfat unless otherwise noted.
No processed foods containing saturated fat.
A good source of omega-3 along with a multi-vitamin and mineral supplement are recommended daily.
There are no restrictions on wheat, gluten or dairy, but any foods that an MS sufferer is intolerant to should be avoided.

Best Bet, another diet, which I think may be overly restrictive:

Avoid all dairy, grains, legumes, eggs and yeast.
Avoid all allergenic foods which are identified by skin and ELISA tests.
Avoid all red meat and margarine
Eat fish and skinless breast of chicken and turkey, for protein fruits and vegetables for carbohydrates and micro-nutrients and extra virgin olive oil and unrefined sunflower oil for fats.
Take as many of the 17 recommended supplements as your budget allows.

More as time and my patience allows...

waves

2009-12-20T19:40:38Z

Good morning, everybody.

I have GOT to remember the following things:

1.) Sometimes waking and baking is not something to laugh about or even an option. Sometimes, it's *exactly* what I ought to be doing. Because, really, the hour-to-hour and a half that I spent feeling like absolute crap before taking care of pain management adequately was not worth it! I spent that time whining and driving Adam nuts by asking his opinion and then questioning it and then changing my mind because I knew he was in his right mind and I wasn't. It's Sunday morning, for goodness sake. The man deserves a break. Even the Lord thinks so.

2.) I am not on the Swank Diet yet. Until I actually start the diet, I can't freak out at every meal. I know that I said I was starting it the other day, but it was a big knee-jerk reaction, and I until I can fully remember reading the parts that explain how the diet helps, I'm not starting. Besides, it's still the holidays and Adam's family keeps sending us cured meats in the mail. Sweet, delicious, not-allowed-on-the-diet holiday meats. That might make my brain explode. AIIGH!

So, yeah. I've been having anxiety attacks at almost every meal, worrying that everything I put in my mouth now is contributing to the decline of my health. It's awesome. Add that to the appetite suppressant of the Topamax and the Cymbalta and I am pretty high on the "I don't feel like eating." scale.

3.) Next year, I need to plan a birthday brunch, because no one else is gonna do it for me. I didn't plan anything because my health's been so up and down, and only one person even asked me if I was doing anything. Bums me out more than a little. I should be celebrating that I've made it through another year. Also, it should be a brunch, because I feel best in the mornings.

I wish I could feel stable this morning, but every time I get up, I'm wobbly. I want to shower, but I don't feel safe to do so at all, so even though Adam's offering, I think it's a bad idea.

But! Jenny's gonna be here in an hour and a half, and I'm supposed to go out for a birthday lunch with her.

So I'd better get to feeling better fast. *sigh*

I am actually trying to psyche myself up to have energy to go out with a friend for lunch. what the fuck.

Been a few days.

2009-12-19T19:51:25Z

Hey world!

Been a few days since my last post here, I know. I've been really overwhelmed.

Yesterday deserved a post, no lie. The Day after Steroids. It's like it should have it's own movie... or at least it's own warning label.

WARNING: Sudden lack of corticosteroids in the system may lead to the Kryptonite Effect^TM *lol*

I was so proud of myself and feeling good yesterday morning - getting up at 7:30, going to work and getting there by 9:30 - getting my 1st paycheck... but I didn't make it through the whole day before I started having blurred vision, atonic seizures, and MASSIVE fatigue.

See, I forgot that my body had gotten used to getting that IV-SM infusion at 11 am and getting to go to sleep when it wanted to around 12:30. So at about 1 p.m., when it had no more super-juice, my body went, "WHAT THE HELL, SHAPIRO?! WHERE IS MY MAGIC JUICE THAT MAKES YOU ABLE TO FUNCTION!?! AND MY SLEEP! GIVE ME WHAT I WANT!!!" and I simply didn't have it. So I did what any normal person would do and called Adam to pick me up. He was already on his way - and I ended up being at work the whole time I would normally be there, though, unfortunately, I was worthless for the last hour and a half.

I've been really frightened on and off recently about my vision. It's been blurring a lot, on and off, and I know it's a totally common problem with MS - but with how much I read and write, and how random it is that the fuzzy happens, I don't even know how long it's gonna be before I need glasses. At least I'm not worried about going blind for real - just worried about when it's gonna stick around. So there's something! I'm feeling lucky about that.

I'm not feeling so lucky about what's gone on at Stanford, though. I was really hoping against hope that out of all the locations that are working on the Liberation treatment that I would be able to go there to be a part of the trials, or at least to get the treatment there - but it appears that one of the patients who got the treatment with the stints put in has died - so they stopped the program there. Bleh.

Well, death vs. life with MS. Always choose life, right? Yes. Always life, even when it hurts. Too much good. Too much magic. Too many gifts in this world. Too much love. Too much good to just let go because of fear or pain.

As much as I hate to say it, if I *must* be patient and let other people go through more testing of this stuff before I jump in to get my condition treated or fixed, I can be patient. I just don't want to get a whole hell of a lot worse. Earlier, the better, you know?

Anyway - I'm feeling TONS and TONS better than I have been in a long time. I've got a 5 hr energy in my system and I'm excited about spending more time outside of the house. I'm also glad that I'm at my workstation in the study near Adam and not on the couch in the living room. I have a desire to be living as opposed to wanting to crawl back into bed and escape life. Whether that's positive attitude, medicine, or some combination, I don't care. I'm just glad that I'm thriving at the moment.

I'm glad I remembered that there is no objective point to living. We all just do it our own way and try to have as much fun as we can while we're doing it. :) I'm glad I remembered that I can't do it wrong... because even if God is judging, what's he gonna do - give me a 6.5 for couch sitting? "You really could have made better use of that wireless network connection, Rachael!" That's what God would say. *lol* Yeah, right.

I spend too much time thinking about what I "ought" to be doing or thinking... too much time punishing myself for what I can't do or what I'm not doing, and not enough thinking about what I am doing. There are actually times where I think I haven't accomplished anything in the last couple of years since being diagnosed with the seizure disorder. Isn't that nuts?

But that's ok. This is a struggle and a half, but hey! It's life! THAT'S THE POINT! :)

Well, that and eating good food. That's life too. And dammit, I'm hungry. It's time for food. :)

Things to think about!

2009-12-16T07:28:27Z

I'm not one to jump on a band wagon of "OMG THERE'S A CURE!!!" or even to get my hopes up, especially about something as serious as MS.

That being said, I'm extremely optimistic about The Liberation Treatment. (<-- Awesome Canadian TV show behind the link with a ton of explanation and science, if you're interested!)

An Italian doctor may have found the cure for MS in an attempt to cure his wife - the situation being that the veins in the jugular, chest, and sometimes spines of MS sufferers narrow so significantly that heavy metals, such as iron, are not properly removed from the brain.

It's called the Liberation Treatment because they use an angioplasty treatment to open the twisted veins (which they believe form that way during pregnancy), and it liberates the blood from the twisted vein. Of course, many treated patients said they were liberated.

I've been reading and reading about it, and I'm going to make myself (and whoever cares to read) a good post on it and what's been found so far - the resources so far that are out there and whatnot as I find them.

I'm very serious about finding out the level of my blockage and fixing it, if it's significant, which I'd bet good money that it is. Whether it's just "temporary relief" or a total cure, it's sound science.

Step #1 for me is going to be finding out the level of blockage.

Another thing for me to think about is a diet change - maybe to the Swank Diet.

Now, I know what you're thinking... "But Rae! Wasn't that the first thing that you asked Dr. Giesser about? And wasn't her RESOUNDING answer, "NO!"

Yes, and yes.

I wanted to jump onto whatever "cure MS NOW!" I could, and she said that there was not enough science to back the diet up - that it was more important to eat healthfully, and that she didn't want to give me false hope on unproven "cures." I see the above-mentioned information as science that backs up the Swank diet, and I'm almost certain she'll feel similarly about the Liberation Treatment.

Now, I'm not saying that I think the Swank diet by any STRETCH of the imagination would be a cure, but that by keeping a diet low in whatever the problem things are in my blood-stream that are filtered by my blood, I can at least help things out while doing what can be done.

Besides, I gave the Swank Diet a good look over tonight, and it doesn't look all that much different from the South Beach Diet. Worst case scenario, I'm unnecessarily limiting my dietary choices and giving myself a false sense of hope during a time where I have very little. (very little down side) Best case scenario, it helps!

Basically, I've come to the realization, that if I want to live, and moreover, if I want to live well, I'm going to have to fight for it. Everyday. Maybe every moment. I mean, I've had to deal with what I thought was mental illness for years, and knowing that it's been at the hand of MS and questioning myself for years when I really DID have problems... among other things... it's just *sigh* beyond time for ME to be a fighter against MS.

I really feel like this is it for me.

The fight for my life.

Don't get me wrong. I know that sounds melodramatic, but it's not. I spend 88-95% of my waking hours in pain of some kind. I constantly question my stomach. I wonder, if I feel hungry, if I'm hungry, or if it's an aura... if it means I should walk into the kitchen to fix myself a snack, or stay as far away from tile and cooking implements as humanly possible. I never know if it's safe to walk, even to the bathroom, and my spirit is to strong for this weak body.

On days like today, where I was lucky enough to get an IV-SM treatment, I had about 2 hours of feeling good where I got to sit at the computer and play Sims 3 with Adam before I started feeling hungry and then dizzy, and then was having seizures again. So I took a nap, woke up, ate some lunch, watched TV, and then did it again.

But I'm sitting here writing an entry right now, and that's what matters! :)

Because I want to live. I want to write my book, and sing my songs, and someday be a momma to Adam's kids. Yeah, I said it.

I realized that this might be the fight for my life when I realized I no longer even held out hope that someday I'd be a mother. Not even that someone would let me adopt. I didn't even want to go on, thinking that I wouldn't have the energy to even see my kid, or that if I did, they'd have to take care of me. Because, let's be real, I sleep, like, all the time.

But! As Aerosmith said in "Livin on the Edge," - If you do what you always do, you'll always get what you always got.

So, like Avis, I will continue trying harder.

Tomorrow is another round of IV-SM, and then therapy. I have all the info for doctors who are researching the Liberation Treatment, and I will be systematically contacting them starting tomorrow. And I'll start the Swank Diet. Lucky me, I already started the Vit. D supplements on my own last week.

Now if only I could drink enough water to feel hydrated... for some reason, a half gallon a day isn't even kinda gettin the job done, which is odd, considering all the not moving around I'm doing.

***note to self, add Gatorade to grocery list.

I'm so on this. ;)

There are no accidents...

2009-12-14T23:47:25Z

I called my psychiatrist's office this morning requesting to set up an appointment. It seemed the logical thing to do with the kind of thoughts I had upon waking, especially considering that I'd missed my appointment last week because of the drips.

They wanted to schedule me in January. I wasn't having it. Next, the assistant offered to schedule me as the doctor's very last appointment on Dec. 21st (a week from today)... also known as my birthday. I said, "Well, ok... I guess, I could come in on my birthday."

But then I stopped and explained why I wanted to come in earlier and how I thought it would be a really quick visit. (It was.) I even offered to come in today. To my amazement, there was an opening at 2.

Fast forward to 2:00.

I'm sitting in the all-but-empty waiting room, listening to a kind-faced, middle-aged woman talk to the doctor's assistant about the crimes that have been committed against her... about how her wallet was stolen, which contained her social security card (Don't EVER carry your social security card around with you without good reason!!!), and being the sort of woman I am, I join in on the conversation.

Thieves took her purse, stole her car, and are just playing havoc with her identity; her daughter is in Iraq, and this is all going on during the holidays. She's doing her best to keep it together, but she just doesn't know what to do. I offered to give her a great big hug, which she accepted happily. I wondered when the last time was that someone gave her a good hug.

So, I told her my story, but just a tiny little bit of it. As it turns out, she is being tested for multiple sclerosis, and is scheduled for a spinal tap over at USC to boot.

There I was, feeling sorry for myself, wondering the point of my life, if it's worth living, and going on in my head about the pain I'm in, and it's nothing compared to what this lady is going through.

But I was there at the right time to give her a hug, and to give her my contact information, just in case she does have MS. I told her to email me and let me know - that the first year is a heck of a learning curve. I was able to offer her some comfort. I was able to know that I was at the right place at the right time.

I never would have been in that office if I hadn't been taking care of my mental well-being, or if I hadn't demanded care, or if I'd given up on myself or on life.

I was given a chance to make a positive difference in someone's life today simply by being there and giving of myself. If I hadn't told her I have MS, she never would have shared.

I got to make her feel less alone and less scared.

So even if parts of today have sucked mightily in the "holy crap, why is my body doing this!?" department, at least there was a damn good reason for me to be alive today.

Last week... take two!

2009-12-14T18:35:29Z

When your first thought on waking up is, "I want to die," you know you have your work set out for you for the morning.

Now, before I get a talking to from my parents and whoever else, or a knock on the door from the police and men in white coats, I have absolutely no intention of ending my own life. I've taken MANY steps to make sure that doesn't happen - in fact, steps that I intend to outline here.

The thing is-- Waking up and thinking, "I want to die," is not, at least in my ever so humble opinion, a sign that the treatment for your relapse was successful and finished, when it's precipitated by the same pain in my lower back, hips, knees, and ankles.

It makes me wonder if I'll ever be better.

Better.

Is better even possible with a degenerative disorder? Of course it is. I'm just whiny right now. I'm already better today than I was last week.

Anyway - since I started this entry, I called Dr. G. and I have another 3 days of IV-SM on their way to me.

And I am excited about it. I actually fell to the floor, crying, thankful to God that she listened. She actually got quiet and listened when I told her that the IV-SM nurse thought I needed another few days and when I explained to her about the pain moving up and down my back.

My doctors are listening. I just have to speak up and say exactly what I want and why. I have to not be afraid to advocate for myself.

I have to be an expert in my own body because no one can explain how I feel but me, and so no expert can help me treat it until I can explain what's happening.

I think that's true for everyone - chronic illness or otherwise. The best thing we can do for ourselves and for our physicians is to be open and honest and extremely descriptive with how we feel.

Dear Me. Never forget steroids are also a type of hormone...

2009-12-14T04:27:10Z

Well, this is the first time in my life that I've ever had to make the decision as to whether or not to call my doctor AFTER having had 3 days of IV-SM (Solumedrol) to ask her for more.

This, for some odd reason, seems to require bravery on my part.

Bravery, to sit on the other side of the phone, telling someone whose job it is to help me feel healthy and well, that after a 6 day pack of oral steroids and a 3 day regimen of IV steroids, I'm reasonably certain I need another day, possibly 2, and that I think that ought to do it.

And I'm scared of her saying, "no." because "no" means that I get to sit here in the same pain that I'm in right now.

Well, godDAMMIT if that doesn't just make me crazy!

Because where am I now?

I'm better than I was last week! That's for sure! Better than I've been since before I took the bar exam... and there are moments - PRECIOUS, FLEETING MOMENTS of NO PAIN AT ALL and I just want to hold on to them so tightly and not let go.

And maybe that's what I'm doing, greedily. Hoping one more day of treatment might make this pain that seeps inside my spine and makes it hard to even breathe without noticing it will just... leave.

And so I sit here, at 8:14, wondering silently if it's wrong for me to ask for another IV, because I'm afraid of a pain that will likely always exist if I lack the courage to ask for the help I need.

This is the kind of madness that MS works in me. A sort of fear of confronting my doctors to let them know that they're going in the right direction, but that we're just not quite there yet...

Thank goodness for the black and white of the page!!!
Woe is me and the melodrama that can come from the crazy juices that are hormones! What would I tell a friend? If you're sick and the medicine's getting the job done, but you need some more, you need some more. Call the doctor, and get over the drama! You're not making a value judgment on their worth as a doctor. You're asking for the help you need and deserve. Finish your treatment.

*sigh*

Needless to say, I'm calling Dr G. in the morning.

There has to be a better way.

2009-12-12T19:10:59Z

Every month, when I order my Copaxone, it comes to me in a 1 foot by 1 foot styrofoam cube, covered in butcher's paper with frozen gel packs on either side. This makes very good sense, since Copaxone needs to be refrigerated.

However, once it's at my apartment, it goes in the refrigerator - hence, no more need for the cube-o-styrofoam. For a long time there, I kept the gel packs, because, well, with MS you can get pseudoexacerbations when you're overheated. Having cool gel packs around means quick relief... but after 2 years, I have 48 ice packs. That's kinda crazy. Needless to say, I share with family and friends.

But what about the styrofoam containers? I know that I'm now responsible for 50 square feet of non-biodegradable styrofoam waste, just chillin out in a landfill somewhere. In my book, that is NOT cool.

I mean, really, it's enough to know that my immune system is slowly eating my brain... and that it's costing $140K/yr for this medicine... do we have to receive it in a way that causes us to also pollute so egregiously?

And what about all the plastic bottles from our regular prescriptions? I must throw 5-6 of those bottles away a month. Couldn't we recycle those? I mean, wouldn't those pharmacies make themselves look great if they gave you a credit of like $1 for every 5 prescription bottles you bring in? Or even just collecting them so they could be sanitized and used again?

And what about the leftover meds you have when you find out you're allergic to something? What about the poor who could REALLY benefit from those meds? If we flush them down the toilet or put em in the sink, we pollute our water supply. We throw them away, they eventually leach into the earth anyway. Why aren't we using them to help people?

Things like this swim in my head all the time. I don't know how to do something about it.

I think about collecting the styrofoam containers to make art, but I'm not much of a visual artist. Then I think about trying to find a way to contact others who receive their meds the same way. I wonder how many medicines are delivered like this, and I think about how many "Walks for the Cure" or "Walk MS" events there are -- and I think about how many frozen gel packs we could have on the side of the walks for people.

I dunno. I'm not even sure how I would organize it. Or if it's mine to do. But if I'm thinking about it, then why not? It's a positive difference to make. A really positive one.

Recycle, reduce, reuse, right?

I mean, in the short term, we should at least find a way to use what's being currently used for more than one go-round. I could also use them as planters. Then later, I know styrofoam can be used for insulation purposes too.

Maybe there's something bigger here. Who knows. Readers -- I could really use some help here, if you have any ideas.

I just don't want to make the world die faster in an attempt to make my life more enjoyable for the few years I get to be here. I want to help make it a better place, and that it begins with me.

42 -- Or the Meaning of My Life, Anyway...

2009-12-11T04:45:20Z

If I ever worry that my life has no meaning whatsoever, there's always the internet. I may just exist to make people smile. If I can brighten at least one person's day, every day, what an good life I will have lead.

As a child, I always knew the meaning of life was to make the world a better place. And I always knew that it begins with me - the things I do, the things I say, the way I act to other people.

I know that I make a difference, even when I'm trapped in bed, as long as I'm willing to use my fingers to let my mind out on the internet.

There are so many people I love. So many people whose lives I read about every day, and every chance I get to say an encouraging word, I do so. Every chance I get to nurture, I take. Any work I can do from where I am, I do.

It's enough for me, every day, right now, to know that I give others silent permission to tell the world how they feel, even if the way they feel is bad, or scary, or not what they think other people want to hear by telling everyone what's going on with me while I'm dealing with life with MS.

Sometimes, the saddest, heaviest burdens we carry are those that we aren't willing to share with the ones we love, thinking that we are protecting them from our pain or shame, when just by complaining (yes, I know, it's horrible to say but it's the way we think!), we let them know how we feel. We share our experience with them. We let them love us, and in doing so, we strengthen our relationship not only with them, but with ourselves. We give credence to our own experiences. We self-validate. We get stronger. And it's so important.

It's enough for me, every day, to simply say "Happy Birthday" to someone I haven't seen in person in 4 years, to know that I made them smile from ear to ear because I linked them a version of Steven Tyler singing it to Joan Jett, and her name is Jen and it sounded like he said Jen, and she just happens to enjoy Aerosmith.

In my entire life, the one constant for me, since I started getting on BBSes when I was 11 has been that I love talking to people online. I love keeping in touch with friends. I love that there are people in Memphis who I know would end up being great friends with fantastic people here in LA, or others in Portland, or wherever else.

I *am* a friend. I help people. It's just who I am. It's why I moved toward a job like a lawyer, a counselor - an advocate when I found out that musicians get screwed over. It was more important to me to protect musicians than to continue playing, even though playing and singing is what gives me more joy. It's more important to me to nurture and protect.

I'm here to make the world a better place by helping to make people happier. I'm here to nurture and protect.

Because the world is our home. And to make it a better place, we need to nurture and protect each other from harm as best we can. We need to bring more joy into it.

Even when I'm in great pain, I can do that. Thankfully, the treatments are working, and at the moment, I'm doing more than a little bit better. :)

I am becoming SOLDIER tough!!!

2009-12-10T18:38:02Z

I woke up this morning, like I do every morning, to the sound of my dog barking. He's come to anticipate my 8 a.m. medicine alarm, and for whatever reason, his bladder and colon no longer have the patience to wait those 15 extra minutes for it. I wasn't sore about it. I love Brisco, my little "helper" dog (who I think finally said "screw it, if she's gonna have seizures all day long, there's no way I can warn her" and just became an awesome pet).

I walked outside with him and felt, for the first time in God-only-knows how long, normal. And happy. No pain in my back. No pain in my hips or knees or ankles or anything. We walked halfway down the block! It was awesome. The loose stool wasn't so awesome, but I'm guessing Brisco didn't enjoy it anymore than I did, except I'm guessing we're both very glad it wasn't done in the house. :)

It wasn't until I was back in bed (Please don't judge me harshly, I'm due for another Solumedrol IV at 11 am today!) that the back and leg pain suddenly reappeared in a very real way.

I know it's not as bad as it has been because this is after a 6 day long oral steroid pack and a day of IV-SM, but HOLY CRAPSTICKS!!! The pain is bad. Ok, that's like saying "Slimer from Ghostbusters was gooey."

I had no idea I'd been just going about my days handling the kind of pain that very literally zaps you of your will to live life normally. I was all but tied with invisible ropes to the bed.

You know, my mom told me that a nurse who worked on my grandfather just knew that he was a WWII veteran because he never let anyone know he was hurting. He died of undiagnosed lung cancer. No one had any idea because the man didn't really complain. She said old soldiers just learn to live with the pain, they just walk around with it and don't start complaining until it's too bad to handle.

Yesterday, when the nurse put the needle in, she said it was gonna hurt -- the needle slipped, and I didn't even flinch. This from the girl who used to have to be chased around the pediatrician's office to be given a shot. This from the girl who used to have to use the autoject to do her nightly Copaxone shot! *flexes imaginary toughness muscles* :)

So, told Adam what was up, and loving, wonderful man that he is, he got me some water and the Gabapentin. I am medicated and awaiting the nurse for my 11 a.m. appointment. At home. :-D

Whoever created the at-home IV-SM service, I salute you! Anyone who can remove the necessity to wait 1.5 - 3 hours in an Urgent Care waiting room, and then 3 hours for the drip to run and instead replace that with having a nurse come to your home and run the IV for a total of 1 hour while you watch TV from the comfort of your own bed or couch deserves a salute. Or a parade. Or fireworks. Or all of the above. With honors. :) I mean it! :) And what I say GOES!

Because in the war against MS, I am the very model of a modern major-general. ;)

Thank you, Michelle!

2009-12-09T22:36:02Z

Thank you, Michelle at Healthcare Partners Arcadia!

She put through the referral as soon as she got it, and some IV Solumedrol is on its way to me.

Anthem Blue Cross didn't do anything wrong. The assistant at UCLA just faxed them the request instead of sending it to my HMO. Gotta send the request to the right people to get the money you need. That's nothin new.

My pain isn't nearly as bad as it has been, and after sleeping mostly through yesterday and this morning, I at least have a little of my own energy, which is nice.

If I had more energy and less pain, I would dance at the news, but since I can't, I feel justified in needing the drip still. :)

...and you know - that's one of the things about MS that is maddening - the trying to convince yourself that it's all in your mind, but it's so not. I just think, for a girl who hated needles so much growing up, that it's hilarious that I'm so excited about medicine coming to the house. You'd think I was getting a visit from a long-lost friend.

Maybe I should shower or something. *lol* Emphasis on the "or something." I'd fall if I were to try and shower right now, and a bath would make my symptoms worse. Still, the level of stink on me is unacceptable. Yes, these are the things that people with MS think about.

Sexy, no?

Really? Another insurance problem?

2009-12-09T06:20:42Z

I want to know what the problem was with my insurance today and why they would not cover the solumedrol IV drip that I need. Dr. G's office just told Adam that it was a problem. I don't know if it was that the problem was that they don't want to cover the service that comes to my house, or that they don't want to cover the drug or what.

I was too ill to talk earlier when I asked Adam to handle it.

I am so tired of this. I am angry at Anthem BlueCross for not just letting that service come to my house and give me steroids like I need and like my doctor wants.

Rampages of DOOM.

2009-12-07T21:43:59Z

Back in the day, when I was in high school, I used to like to joke about going on massive rampages of doom... You know, Godzilla-style. As in, RAE-SMASH!!!

I'd like to imagine that with all my teen angst and fury, I could stomp the city I was living in, leaving everyone in a the wake of my anger and confusion. This was, of course, usually accompanied by everyone's favorite monthly visitor and was just as easily avoided with Ben and Jerry's Chubby Hubby ice cream and a good long cry.

Unfortunately, the MS and seizure disorder combo does not work the same way.

See, I finished the oral steroid pack yesterday and I am still hurting. Granted, I'm not hurting NEARLY as much. I'm not spontaneously crying from the pain. I'm not having seizures every 3-5 minutes. So there's something.

But I'm not done treating the relapse because I'm still hurting so badly that the pain makes me want to vomit or not eat, and frankly, I'm tired of forcing myself to eat when I don't want to. I'm overweight. I can afford to shrink for a few days, thanks to disease.

Thing is, you can't really go on massive rampages of doom unless you have energy. And you can't make energy unless you eat.

So, now that things are better, I'm going on stronger drugs. I'm NOW going on IV steroids.

What's THAT? you say? Stronger drugs would have made sense when I was hurting so badly I wanted to die and thought that life wasn't worth living because I was hurting so much? WOWOWEWOWWOW! That's what ***I*** thought too. But no, apparently we save STRONG drugs for when the weak ones don't do the trick.

If my spirit weren't tired too, it would want to go on Rampages of Doom right now over this. Instead, like the rest of me, it just wants to go back to bed too.

Normal!? Please.

2009-12-05T21:21:48Z

Finally got my labs back from my doctor's appointment. I thought I might have a Vitamin D deficiency. Healthy range for Vitamin D is 32-100. Any lower than 32 and you're DEFINITELY deficient and need to have a prescription or follow up or whatever.

Mine is 32.

She says that's normal. It's the LOWEST threshold. According to the Vitamin D counsel, I want to be at LEAST at 50, preferably closer to 60 - and that it's worse if I have (omgz guess what) hypertension (!), an autoimmune disease (!!), or depression (!!!). Vitamin D deficiency is actually linked to all of that.

So guess what I'm getting at the store today? D3. Not even a joke.

.

Right now, I'm at home. I should be at the adoption fair, pimping my kittens, but I had a big seizure there. I've been taking steroids since Tuesday. I'm on day 5 of 6. You'd think I'd be all better. But I'm not. My back is hurting like a bitch right now. So is my wrist. So is my elbow. So is my ankle. So are my knees.

I'm so pissed! Super pissed! But what am I gonna do about it, you know? I guess I'll call my doctor on Monday, again. Be like, "Hi, Doc! I was doing great the first couple of days on the higher dose of steroids, and now I'm hurting like a mofo again! Can I have some more pain relief please? Or do I have to go to the hospital? I kinda hate doing it, but I'll do what I have to."

*sigh* I'm so tired of feeling like my doctors don't hear me. It's like they listen, but they don't understand. Or worse, that they've heard things so many times that they lack empathy and just kind of shrug things off...

It's just so weird WANTING to go to the hospital every day. So bizarre WANTING a Solumedrol IV... but I guess that's what this disease does to you. You learn what makes things better, and sometimes you learn that the best thing you can do is just submit... There are medicines they can give you at the hospital that you cannot give yourself at home. They can make the pain STOP, and it's WORTH it sometimes.

I'm losing my patience with these seizures and this relapse. Funny thing about health though, you can rage all you want, it's gonna do what it's gonna do. So you just gotta roll with it.

Who I Am Makes A Difference

2009-11-30T08:22:12Z

I hate my attitude at the moment.

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

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

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

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

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

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

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

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

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

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

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

It's beginning to look a lot like Gift-mas...

2009-11-27T17:45:11Z

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

Rachael's Amazon.com Link

Thanks so much! :)

Well, at least now I know!

2009-11-24T20:47:52Z

I didn't pass the 2009 California bar exam.

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

So, it is what it is.

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

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

In February? No way in hell.

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

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

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

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

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

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

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

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

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

You want me to do WHAT with my blood!?!

2009-10-18T22:58:40Z

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

Bleeding.

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

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

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

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

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

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

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

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

True, the first sentence says,

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

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

And it isn't true.

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

But it gets worse, y'all.

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

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

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

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

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

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

Absolutely Shameless Self Promotion

2009-10-18T21:37:45Z

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

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badtoday

2009-10-12T23:37:11Z

seizures are really bad today. Don't know how long they've been lasting or what time it is when I wake up. Thought it was around noon. Turns out it's 4 pm. Feel like I'm losing my mind. Kitten woke me up just now from confusion by jumping on Adam's laptop and turning on a song that brought me back to the appropriate time period.

I hate jumping back in time.

I hate the feeling of being lost in my own home, in my own skin.

Sometimes, I'm lucky. I get stuck. The seizure hits me hard enough that I'm tired. I'm so tired that I don't want to move, or I still can't move because it hasn't let go of my body. Sometimes, I just give in to that and usually by the time I wake up, Adam's turned on the Doctor Who or Entourage theme song.

I don't know why that works, but it does. My mind is so strange the way it works, but I remember the moment I first heard music that I've memorized. If I hear the Entourage theme music and I'm in a mindframe that is earlier in time - hearing that music RIPS me right back from where I was in consciousness into "today's" me... or at least the me that has seen Entourage. The rest comes back fast enough. The important stuff is there: I'm the right age. I know I have MS and a seizure disorder. I know where I am. I know who Adam is. I know I'm safe.

Adam jokes sometimes about how I should write Doctor Who and Jane's Addiction to let them both know how their music's positively affected my life, since that's the sort of thing that I would like to know about as a musician. I think I may. Who knows. :)

There are times where I think that if I ever wrote about any of this, I'd get sent to an insane asylum, but then I realized that if I write it on the internet, it's more tame than most things. heh.

I'd say I'm not crazy, but I know I'm not in control of any of this. Not in control of the seizures. Not in control of where in time I wake up... whether I'm suddenly 4 years old, 10 years old, 20, or 28. And it still amazes me that I'm that young. I could swear I'm in my 80s.

I called Dr. Sutherling's office and told them that I'm having an increase in the number of seizures that I'm having over the last couple of days. I'm waiting for them to call back.

These consciousness knocking trips are what make me question my ability to live a good life.

I worry that I'll lose my sanity. I worry that I'll lose the love of my life. I worry that I'll forget the most important or beautiful things...

But oddly when I'm "transported" - I remember, with exacting detail, so much I thought I had forgotten. It would even be as if I were there. I remember the feel of the rock that the fireplace was made of...the one at my parent's first house. I remember the feel of the carpet where it met the hearth and how I always made it more crumbly and it made Mom crazy... It's funny but I almost always start repeating the address to myself. When my inner child gets scared, apparently, it's very important to give your address, phone number, and where they can find your parents and grandparents... At least she's trying to stay safe! :) And Adam almost always gets music on faster than I get worried, if I'm in that frame of mind.

*sigh*

I feel so out of control. I wish I could just accept it.