Setting the bar too high?

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!

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…

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*

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.

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 EffectTM *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!

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…

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.