Monthly Archives: December 2009

*waves*

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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.

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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!

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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…

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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!

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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…

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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.

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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…

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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!!!

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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. 😀

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!

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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?