I’m so doofy, I forgot to title this post for several hours.

Priorities.

I just finished reading a great article on “debugging” our brains. As I was reading it, I came across this gem: facebookforever

Every morning, I wake up, feed the dog, text my husband, and immediately check both my email and Facebook notifications. This sometimes leads me to forgetting to eat breakfast until nearly noon. All I could think was, “How does he know?!”  Rather quickly, I realized, “I’m not the only one.”

Fortunately, the article lead to me getting off the computer (for at least a few minutes) and eating breakfast. I quickly followed that up with starting this entry, lest I forget to blog today.

It’s a beautiful day outside today in Chicago, so if I don’t get dressed and walk around outside for a while, I know I’ll be sore with myself. For me, weather doesn’t get any better than mostly sunny and in the low 60s. Hoodie-optional weather. It’s the best.  Fortunately, I live very close to both Marshalls and a couple of decent grocery stores.  I think when I’m done with this, I’ll put up some laundry to wash, get dressed, and head out to enjoy the weather and go shopping.

Of course, it’ll be easier to finish this entry if I stop bouncing back and forth between writing this, checking a couple of message boards, and answering email… No! Right! NOW! 🙂

So, what are my priorities for today?

  1. Figure out what on earth to make for dinner, so I can get the ingredients while I’m out.
  2. Do laundry so we have clothes to wear.
  3. Maybe even fold some of it… (Ok, let’s be real. This one belongs dead last on the list.)
  4. Make an appointment for Brisco to get groomed.
  5. Unstack the dishwasher.
  6. Do as many of the dishes that are hanging out in the kitchen waiting to be cleaned as I can before I start feeling punk.
  7. Make the bed and refill the humidifier.
  8. Tidy the living room.
  9. Go to the gym or at least get Adam to go on a walk with you for a half hour at the park.

Any more than that, and I know I am setting myself up for failure… so let’s focus on the good to get my attitude moving in the right direction!

Edit – 2 or 3 hours after I initially posted: I didn’t make it out of the house before storm clouds invaded. I constantly forget that my body is in far more control of the outcome of my day than my intentions. I figured out dinner. Laundry is up, dishes are soaking, lunch is baking… and I’m calling that a win.

awesome6

3 Great Things About Yesterday

  1. Spent some quality time with the in-laws.
  2. Had brunch with some friends we haven’t seen in a long time who are always great to be around.
  3. I know it’s gonna sound cheesy as hell – but there was a moment yesterday when, out of nowhere, Adam came over to me and said, “You need snuggles.” and proceeded to cuddle with me. That was, without a doubt, the best moment of the entire day. I love that man.

What made YOUR Sunday special?
 

Daily Cute

Please ignore that this is a commercial. Without the branding, it’s adorable.

Everyday Earbug

I can’t even explain why I like this song and particular mix so much, but I really do.
 
monday

Mostly Better

It’s been a week. My last entry happened on a day when I had more than 20 seizures. I’ve learned that if I’m that incapacitated by seizures, I’m definitely having an MS relapse. I called my neurologist to follow up, and he called in a medrol dose pack on Friday afternoon. The effect was damn near instant. Thursday: 20+ seizures, Friday prior to meds: 13 seizures (I took the first day’s worth after dinner), Saturday: 0 seizures. NONE. Not one.

I wish I could say that I haven’t had any since Saturday, but that wouldn’t be true. Yesterday I had a couple, but they were simple partials (facial twitches), so I’m not worried about them. I’ve come to the point in my experience having seizure disorder where 1-2 simple partial seizures a day doesn’t feel like any big deal to me at all. Today, so far, I’m good. Maybe that means that tomorrow I can get back to the gym. I’d really like that.

Doing The Right Thing

Sometimes, I do the right thing without even realizing that I’m doing it. It always makes me smile when that happens. Take that letter that I wrote myself last week, for example. Apparently, science has proven that writing yourself compassionate letters is good for your mental health. It stops you from ruminating on the negative and allows you to take positive action. (Like taking a much-needed nap!)

Today, I’m doing my best not to ruminate on an irrational concept that a friend brought up in reference to herself. She said that she didn’t want to live a mediocre life.

A Mediocre Life? There’s No Such Thing.

For whatever reason, reading the phrase “living a mediocre life” felt like a punch in the chest. The idea that I might be living what she considered to be a mediocre life stuck in my craw. What upset me worse was the idea that I might think that I’m living a mediocre life.

I mean, I spend most of my days alone in an apartment, doing household chores and participating on social media.  It’s not exactly the stuff of legend.  Back in the day, before seizures, I used to be much more social and was very career-driven. But does a change from that way of being mean that my life is second-rate or ordinary? Since when has anything about me been ordinary?

Truth be told, I spent a significant amount of time in therapy wrestling with the question of why I’m even alive, if I’m not doing anything important. The answer to that question was remarkably simple: Because it’s better than the alternative! And, besides, how am I supposed to accurately know what is or isn’t “important” in the grand scheme of Life, The Universe, and Everything? That requires a level of objectivity that no human can possibly attain.

So, sure, I’m not living life the way that I had hoped for myself. So what? What person living with a chronic illness is? Hell, I’d go so far as to wager that no one is! We all deal with shit being thrown at us that we neither expected nor wanted, and we deal with it. Does living a life that is different from the one “of my dreams” mean that my life is inferior, insignificant, or of poor quality?  No, it doesn’t.

Just Because You’re Not Living The Life Of Your Dreams Doesn’t Mean You’re Not Living Well.

There’s so much pressure in our society to stand out and be considered important, and it’s totally unnecessary. It comes from our constant consumption of narratives: TV shows and movies and books. And most of these narratives are fictitious. In real life, we’re each the protagonist of our own story, but none of us knows the whole story because it’s constantly unfolding before us.

Hell, the US military even capitalized on this idea by asking the question, “If your life was a story, would anybody read it?” in recruitment ads. It’s such a silly way of thinking. Comparing stories from our lives with other people’s stories based on entertainment value is fruitless. It’s a directive for misery. There will always be people who have it better and those who have it worse. There will always be people achieving more and those who aspire to far less.

I mean, let’s take a step back from the question of “Is my life mediocre?” and ask an even more important question: who’s judging? Society? The media? History? Why should I care what anyone (other than me) thinks of my life? I’m the one living it, and I’m proud of who I am. That’s what studying Tao is all about: the idea that your path is unique to you, and that you can’t do life wrong.

If we must put ourselves up for judgment, I think it’s better to focus on a set of objective metrics.

  1. Do you do something to learn and grow as a person every day?
  2. Do you engage in activities that contribute positively to your community, such as philanthropy, charity, or advocacy?
  3. Do you treat yourself and others with kindness, compassion, and respect?
  4. Do you make an effort to use your unique talents when you’re able to?
  5. Do you take time to express gratitude and to appreciate the people and things in your life?
  6. Do you share your knowledge with others? Everybody knows something you don’t! It’s one of humanity’s greatest gifts!
  7. Do you make an effort to be empathetic and honor the experiences of others?

I think that if you can say “yes” to those questions, then you’re living a life you can be proud of.  And to be honest, even if you can’t answer “yes” to all of them, it doesn’t mean that your life is mediocre.
 

Shake It Off

Today’s earbug is a pop song by Taylor Swift. I usually don’t like her music, but I’ve had this song stuck in my head for a few days, and it works with the theme of today’s post. I hope it makes you want to shake your booty too.

A Letter to Myself

Hey, Rae.

You’re having a tough day today. You’ve already had so many seizures that you’ve lost count. You barely have enough energy to get up and do things, but you’re still trying your hardest. You’ve put up some laundry, made the bed, and most importantly, you called your neurologist to request medicine.

Having seizures is no fun. They mess with your memory and perception of time. They mess with your motivation. They mess with your ability to be the kind of person that you want to be. Please, don’t ever let them stop you from trying to be that person anyway.

I’m not sure, when you start having multiple seizures per day and are getting tingles on your back and feet and left side, why you don’t immediately call the doctor to ask for medication, but you don’t. Ok, that’s not entirely true. I know you cling to the hope that it’ll pass. You reason to yourself that you’re either overheated somehow or are fighting off an infection that you don’t know about. The most treacherous part of regularly having pseudoexacerbations is not that they occur, but that you can never trust your body to let you know when what you’re feeling is not a pseudoexacerbation, but a real relapse. Pseudoexacerbations rob you of your ability to trust yourself. Keep listening to your body anyway.

Today, it’s a beautiful day. It’s mostly sunny and a perfect 68 degrees outside. I know you desperately want to get up and walk the dog and then walk to and from the grocery store to make some kind of delicious dinner in the slow cooker, but your body is telling you that you really shouldn’t try to do that, for your own safety, and you’re angry about it. It sucks! Nobody wants to be trapped indoors by their body.

But remember, it’s not always like this. There will be days when you can do 45 minutes of cardio as well as weightlifting at the gym. Just not today. Today is about exercising self-compassion and resting.

I hear you, raging in the same brain that is writing this letter. I hear you crying and screaming about how this is all terribly unfair, and you’re absolutely right. It is! There is nothing fair about multiple sclerosis. And that’s okay. Life’s not fair. We all do the best we can with the life we’ve got.

Even though I know you want to get up and do a million different things – putting up the dishes, folding the laundry, cooking something for lunch, washing out the bathtub, or any of the other things you keep fixating on, like practicing yoga, playing guitar, or learning to sew… I’m telling you to take a nap. I don’t care that you only woke up 3 hours ago. You’re tired. You’re so tired you can barely keep your eyes open as you type this. Please stop pushing yourself so hard and being so mean to yourself about what you’re unable to accomplish. It’s not helpful. It doesn’t make you feel good, and it doesn’t accomplish anything productive.

Thank you for letting me write this letter. I know it’s weird and embarrassing to be publishing something like this to the public, but maybe someone else needs to hear the same things you do… so I’m saying them.

You don’t have to compare yourself to anyone else. They’re walking their path. You’re walking yours. Just do the best job of taking care of yourself that you can. That’s all anyone who loves you actually wants from you.

The Irony Is Not Lost On Me.

In the wake of Robin Williams’ death, I’ve been talking with a lot of my friends about the topic of suicide.

Suicidal Thinking: I know a little about it…

suicideThe first time I tried to kill myself, I was very young. I want to say I was 8. I might have been 9. I was in 3rd grade. I had been through some shit. I took double the adult dosage of some cough syrup. (What can I say? As a kid, I didn’t understand how it worked.) To my surprise, I didn’t die. I did, however, faint, and get to deal with EMTs. I actually was glad I lived, but I never stopped thinking about it. Any time I was down on myself or dealing with bullies, it seemed like the natural, appropriate answer to the situation. It wasn’t.

In early 2003, at the age of 22, I walked into Lakeside and said, “I need help. I can’t stop thinking about killing myself.” The week that followed was horrifying, but helpful. They put me in a room with an anorexic lady who stole my down jacket so that she could sweat off more weight, and I actually had to spend a significant amount of time in group therapy with the very woman who had abused me as a kid at child care and convinced me that I was nothing more than a burden to my parents.

In a very everything-happens-for-a-reason sort of way, I learned all about the abuse she suffered as a child and her messed up reasoning for abusing me. Turns out, I was actually her favorite child from day care, ever. At the time, she was unmedicated, undiagnosed, and suffering from schizophrenia. She genuinely believed that she was trying to teach me necessary life skills and the reality of the world we are living in. Abusers often don’t understand that what they’re doing is harmful because they’re repeating a cycle from their own lives. So, I had to forgive her, in front of a group of strangers, so she could begin to forgive herself. She had been red-banded (a red wrist band told hospital workers not to allow her outside or near anything she could use to harm herself) for more than 6 months. In contrast, I was red-banded for 2 of my 5 days.

The second time I was hospitalized thanks to suicide was 7 years later. Even after going through EMDR therapy to help stop seizures and deal with trauma from earlier in life (much of which I have intentionally kept off this blog), I genuinely believed that I was nothing more than a burden to my family and friends. In the course of 2 years, I had gone from being a socially adventurous academic overachiever to someone who had seizures almost all day long, every day, who couldn’t work and spent all of her days either on the couch or in bed.

suicide2When my parents suddenly let me know that they could no longer help us with rent, Adam and I faced an immediate choice between heading to a homeless shelter and leaving the Los Angeles area to move in with his brother in Romeoville, IL. Either way, we would lose most of our possessions and pride. I felt entirely responsible for our situation, regardless of the facts that Adam had been unemployed for 2 years thanks to the recession and I had no control over having MS or a seizure disorder. I simply wasn’t willing to pull Adam down any further, and I could no longer handle my shame.

I was put on a 72-hour mandatory hold at Glendale Adventist after he called the police because I walked directly into traffic on a busy street. It was the most loving thing anyone has ever done for me, and it helped transform my life. It was there that I learned the truthful phrase, “Suicide is a liar demon.”

I wish I could say that my fight against suicidal thinking ended in that hospital, but it didn’t. It did, however, jump-start some better behaviors, like using aromatherapy to help keep you in the present moment. Unfortunately, I still couldn’t cope with the fact that I’d failed the CA bar exam twice (and wasted $20,000 in the process) or that I still couldn’t magically make myself better enough to be able to work.

It wasn’t until January of 2013, when I started working with a cognitive behavioral therapist to really break the cycle of suicide addiction, that I learned how to stop suicidal thinking in its tracks. It’s probably the most valuable set of rituals I’ve ever learned.

How I Kick Suicidal Thinking’s Sorry Ass Every Single Day

behappyThe best advice I got from CBT was to keep busy. My therapist often said, “An idle mind is the devil’s playground.” But just keeping busy doesn’t get the job done. It only helps distract you from your thoughts so you can get a word in edgewise with your thoughts. You still have to be pro-active. You still have to recognize when you have irrational thoughts and fight them. And any suicidal thought is irrational. Trust me on this one.

Here’s what I do to keep suicidal thoughts at bay:

1.) Every morning, I list 3 Great Things About Yesterday to remember the good that happened in the past and trick my brain into forgetting about or at least not focusing on the bad. Sometimes I write it here. Sometimes I write it on Facebook. Sometimes, I write in a real paper journal.

2.) Daily gratitude rampages help me focus on what’s good in the moment. Most of mine are in the journal, but sometimes I do them here or on Facebook.

3.) Daily meditation helps me focus my intentions. Right now, Chopra Center has a free 21-day meditation challenge going on, if you want some guidance to start your practice.

4.) I am constantly examining my thoughts for truth to figure out what’s real and what’s an ANT (automatic negative thought). If I find out that a thought is an ANT, I challenge it. It’s like running virus protection for your mind.

5.) Move! Even if you only take a 5-10 minute walk a day or do a few minutes of chair yoga because your legs don’t want to cooperate, getting your body in motion makes a huge difference in your ability to be happy.

When I started these practices, they were very difficult and a constant pain in the ass, but so was enduring life! Nowadays, they’re usually easy, quick, and enjoyable.

Rest In Peace, Mr. Williams.

robinwilliamsI have to say though, that I wouldn’t have written any of this if not for the fact that Robin Williams choked himself to death with a belt.

This guy — this actor/comedian whose roles were so intensely life-affirming that I watched many of them (especially Robots, Dead Poets Society, Good Will Hunting, and Hook) multiple times while fighting suicidal ideation — he did the world a horrible favor by dying this way. He brought suicide into popular consciousness in the worst imaginable way — by being the very last person anyone would have expected to do it. The irony is not lost on me.

Robin Williams got us talking about how international fame, ludicrous amounts money, and talent-without-match are absolutely fucking meaningless when you’re dealing with addiction and suicidal thoughts. He reminded us that just because someone is smiling doesn’t mean they’re okay. He reminded us that actors can completely miss the messages for which they’re so loved. It’s profoundly sad.

Here are my favorite quotes from his incredible body of work:

Sean Maguire in Good Will Hunting: “You’ll have bad times, but it’ll always wake you up to the good stuff you weren’t paying attention to.”

Armand Goldman in The Birdcage: “So what? The important thing to remember is not to go to pieces when that happens. You have to react like a man, calmly. You have to say to yourself, ‘Albert, you pierced the toast, so what? It’s not the end of your life.’”

Fender in Robots: “You know Rodney, even if you know you had an discouraging day, remember. There is another one coming tomorrow!”

Genie in Aladdin: “To be my own master. Such a thing would be greater than all the magic and all the treasures in all the world.”

Peter Banning in Hook: “To live… to live would be an awfully big adventure.”

John Keating in Dead Poets Society: “They’re not that different from you, are they? Same haircuts. Full of hormones, just like you. Invincible, just like you feel. The world is their oyster. They believe they’re destined for great things, just like many of you, their eyes are full of hope, just like you. Did they wait until it was too late to make from their lives even one iota of what they were capable? Because, you see gentlemen, these boys are now fertilizing daffodils. But if you listen real close, you can hear them whisper their legacy to you. Go on, lean in. Listen, you hear it? – – Carpe – – hear it? – – Carpe, carpe diem, seize the day boys, make your lives extraordinary.”

The fact that I posted a “Carpe Diem” graphic yesterday felt like a kick in the gut. It deserves repeating.

carpediem

You’ve Got To Be Kidding.

Fucking Awesome.

This weekend, I got a comment from a stranger on this blog. She let me know that whenever she does a Google search that includes both profanity and MS, my blog pops up.

On the one hand, there’s the tiniest amount of shame because, truthfully, my parents and grandparents did their best to encourage me to have clean language. (In high school, I was constantly getting corrected for using coarse language. When I came home from my first semester of college, my grandfather joked that I had become a sailor. In truth, I did use some variant of the word “fuck” between every phrase that came out of my mouth. It had become a verbal crutch.) On the other hand, I feel a bit of pride. It means that I’m unabashedly honest about this bitch of a disease.

Who would have thought that my use of “bad” words would drive traffic to this site? Hilarious and awesome. Or, as my friend J.R. would say, “Rich and compelling.”

I’m not gonna lie.

Last week, I received an email from Healthline asking me to participate in their campaign for MS called “You’ve Got This” where individuals living with MS can record a short video to give hope and inspiration those recently diagnosed with MS. For each video, Healthline is planning to donate $10 to the National MS Society.

I thought, long and hard, before choosing not to participate. At the end of the day, I couldn’t in good conscience tell someone who’s newly diagnosed that MS isn’t a big deal and that they’ve “got this.”

Had Healthline approached me to do this during my first year after diagnosis, I would have been all over it. Despite the MS diagnosis, I both completed a legal externship with a record label and graduated law school. I refused to let MS stop me from doing the things I wanted to do in life. I believed that nothing could stand in my way if I just tried hard enough.

But then I developed a seizure disorder, thanks to the MS.

That seizure disorder meant that I missed the first bar exam that I prepared for, and that I would fail the bar exam twice, despite my best efforts, because it’s impossible to pass that test when you’re repeatedly seizing during it. It would mean that I would not be a CA attorney or even be able to continue to live in CA. It would mean moving in with my husband’s brother in a small town that I did not like because my medical expenses had financially fucked us.

Having a seizure disorder caused by MS meant that it would be 4 full years before I even felt safe enough to try exercising (which also meant 60 pounds of weight gain). It meant not ever being able to have a career, not being able to be in a hot kitchen with sharp knives and cook safely, and not being able to perform with a band as a vocalist.

It would mean never being allowed to drive a car again, and because of that, suffering years of isolation and being trapped in the apartment while Adam went to work for us. It meant that it would take more than 2 years to come off seizure, MS, and depression medications before I could even have the opportunity to be told by an OB/GYN that I still needed to get my hypertension under control and lose 20 pounds before I could even think about pregnancy.

Having MS and seizure disorder took all of my plans for life, laughed derisively, and then took a big nasty shit on them, then looked me in the eyes and dared me to try making more plans.

So, all that being considered, I think it would be at best disingenuous for me to tell someone who just was diagnosed that they’ve “got this,” and at worst, it would be straight up lying.

A Healthy Respect For MS

Anyone who tells you, when you let them know that you’ve got MS, that “you’ve got this,” or who tries to minimize it by suggesting that it’s not a big deal, is totally blowing smoke up your ass.

Multiple Sclerosis is different for everyone who has it. Some folks are lucky enough that it’s “benign” for them. Most of us are not so lucky.

Most of us deal with many of the conditions on this list, caused entirely by MS.

  • Blurred or double vision
  • Thinking problems
  • Clumsiness or a lack of coordination
  • Loss of balance
  • Numbness, tingling, and/or burning sensations
  • Chronic pain
  • Weakness in an arm or leg
  • Muscle stiffness or spasms
  • Fatigue
  • Paralysis, most typically in the legs
  • Problems with bladder, bowel or sexual function
  • Depression and other mood disorders
  • Epilepsy

That list is great, and all, but it doesn’t tell you the larger truth behind what it means to live with MS.

Living with MS means being the embodiment of resilience. You will learn how to live in the moment, if you’re smart, because none of us knows when MS will make our lives more difficult. It means that this disease will, more than likely, knock you down, over and over and over again (sometimes literally!), and that you will have to find a way to get back up every time. It will redefine your idea of what it means to be successful, grateful, or patient.

Living with MS necessitates learning how to deal with insurance companies, just to get the coverage you need to be okay. And, unless you’re extremely wealthy, it will also cause you accept charity, usually in the form of copay assistance for medications that are priced in such a way that you may consider it punitive.

Life with MS forces you to question your faith in both God and man. For some, that means that their faith becomes stronger. Prayer and meditation have certainly been comforting for me. For others, it means leaving religious communities that are not supportive of receiving medical help. Personally, the experience has increased my faith in mankind and decreased my faith in the idea that God’s got a plan for everything. I just can’t believe that the suffering of so many people is part of a plan towards some greater good.

If anything, MS has made me painfully aware of my mortality. I am aware that at any moment, I could suddenly not be able to breathe, or my heart could stop, or any of the other functions that are controlled by neurons in the brain stem could just stop working.

MS is like a box of poisoned chocolates. You never know what you’re gonna get, but you know it’s not gonna be good.

On Maintaining Individuality

One of the biggest challenges, for me, has been fighting against isolation and loss of individuality. For more than 5 years now, any time I leave the apartment, I’m with someone else. Usually, that someone else is my husband. This has been out of necessity, for safety’s sake. I’ve made it to the mall once. I took myself to an ophthalmology appointment once. But, those 2 times are not enough. It’s kind of dangerous just wandering around town with an uncontrollable seizure disorder, but my other option involves a level of entropy to which I’m not willing to succumb.

And Adam’s not sick. He needs the freedom to go to game stores and get his geek on. He deserves the time to go to a writer’s group for his screenwriting…but he feels bad doing either of these things because it just means more time alone for me.

That means I need to find a way to stop being “forever alone.”

My challenge is to find a way to make new friends in a city that I barely know, to find hobbies that don’t seem impossible with my physical challenges, and to dare to live normally.

Step one: getting some breakfast so I can take the meds I should have taken 2 hours ago.

SSDD. (Same shit, different day.)

Time Traveler’s Log

Yesterday, I had another time travel seizure. Fortunately, nowadays, they’re much more rare. Unfortunately, because they’re so rare, they really shake me when they happen. If we’re friends on FB, you’ve already read most of this section, but I wanted to blog it so I don’t lose it and because there are a lot of folks who are not on FB who I think will appreciate it.

Sometime around 2 p.m. yesterday, I had a complex seizure. I woke up very confused. I had no idea where I was. The last thing I could remember was going to sleep next to Chris in my apartment in Boston in 2000. This laptop was open on my lap, though, open to Facebook, and according to the computer, it was 2014. I didn’t recognize my apartment, my pets, or the name next to my picture.

I clicked my picture. The page it surfed to (my timeline) had a name on it that I recognized (Rachael Shapiro) and it said that I was married to someone named Adam, so I messaged him but he didn’t type back. It also said I had a webpage, so I visited it and got very confused about why I would be writing about MS, seizure disorder, or the paleo diet. I read several entries and felt bad for whoever wrote them. (guh.) I saw on the FB page that it said I had gone to law school. That’s when I decided I was clearly having a bad dream.

I looked all over the apartment and couldn’t find a telephone, and Adam’s timeline page didn’t have his phone number anyway. The TV was playing the same 3 songs over and over again. (I now know I had been having several seizures and in an attempt to stop time travel from occurring, had set up Spotify to play my post-ictal playlist. There were 3 songs there that were supposed to make me remember when I am. It failed. Last night, we added several more songs.)

The next thing I knew, this thing that looks like a TV but that’s the same size as a deck of cards started playing the same music over and over again. I couldn’t make it stop. I kept pushing the green button on the screen that looked like a telephone, but nothing happened. I kept shouting, “Hello?” “Pick up.” “Answer.” and nothing happened. I pushed on the green button again and slid my finger in the direction of the arrows (towards the red button), and that worked. Surprise! It’s a phone. (?!?)

Nearly 24 hours later, I still feel stupid for not recognizing it as a phone.

Adam assured me that this was not a bad dream and walked me through using a program that looks a lot like WinAmp (apparently Spotify) to find a song that helped some of my memories come back. “Call Me Maybe” was the song that worked. I immediately remembered being on I-55 on the way back to Nick’s house after a neurology appointment.

Eventually, my memories came back to bring me up to date. I hate that sort of confusion.

Making Time Travel Easier

In an effort to curb some of the absolute terror that I feel when I go through this stuff, I wrote myself an email. I’m going to post it here too, just in case I end up on this site before I end up on email. Here it is!

Hey, me!

This is Past Rachael, with an important message for Future (present) Rachael.

First of all, everything is okay. I know you’re feeling sick and panicked, but everything will be alright if you read through this email and react calmly.

I’ve been through this situation so many times before that I wanted to find an easier/better way to handle things. I decided to write this to let you know what’s going on and how to get through it! These are things that I know you will want to know if you just woke up, and you’re really confused about where you are, how you got there, and/or how you look.

1.) This is not a dream. You had a seizure! You were not in a car accident, and nobody beat you up. Do you feel like someone hit you upside the back of your head with a 2×4? Are you either super sick at your stomach and think you’re going to puke or super hungry and panicky about it? Those things are completely normal when you’ve just had a complex seizure. Take a few deep breaths and keep reading.

2.) Call your husband, Adam.

You will not find a regular old-school telephone anywhere in your apartment. You do have a cell phone.

It looks like this:
Samsung_Exhibit_II_4G_sidebyside_610x581
It has a purple rubber cover on it, and is about the size of a deck of cards. It’s usually on the arm of the couch, charging. Sometimes, you accidentally leave it in your jacket pocket.

Press the button on the right hand side of the phone, and the screen will light up. Press your finger on the screen and move it to the side, and you should see a home screen. If that’s not what you see, press the little house icon on the bottom of the phone. A screen that looks like a desktop should appear.

Click on the “Phone” icon. It will bring up a dialer program. You can either type in Adam’s number and then press the green phone icon to dial, or you can press and hold down the number 2 and speed dial will dial him for you.

Don’t trust me that your husband’s name is Adam? Think you’re either too young to get married or that you’re still married to Chris? That’s post-ictal (after-seizure) confusion messing with your mind.

You’ve been with Adam since 2006. (That would be 7 years as of the writing of this email.) He was in the room, holding your hand, both times when you were diagnosed — first with multiple sclerosis, and second with seizure disorder. He knows your illnesses better than you do, and he loves you deeply. No one on the face of the planet will be able to offer you more comfort, support, or direction than he will.

Adam and I’ve been through this kind of confusion together a ton of times. You can trust me about who you’re married to and who is safe because I’m you!

Not convinced? Doubting that this is real? Still feeling like calling a “stranger” is a bad idea? Call Mom! She is always speed dial #5 on your phone. Follow the instructions that are above and press and hold down 5 to get Mom. She will probably be a bit upset by the news, and she might get flustered when it happens, but she knows what’s going on. Odds are, she will call Adam immediately if you haven’t already.

Can’t get in touch with Adam or Mom over the phone? EMAIL THEM. You’ve been using webmail since Shadowscape, so I’m hoping you don’t need directions.

To make life even easier on you right now, I added them to the email you will find in your Inbox (It’s the same as what you’re reading!) as recipients so that you just have to “reply to all” on that email, and you’ll get in touch with both of them. It doesn’t get a lot easier than that.

3.) Listen to some music that might jog your memory. I’d say “Turn on Spotify and pull up the post-ictal playlist” but that’s a lot of work for someone who doesn’t know what’s going on. Our TV setup is not simple.

Here are some links to songs that ought to make everything easier.

Click here to listen to “Call Me Maybe” by Carly Rae Jespen.  This song has a strong association in your mind. It usually brings you back up to 2012. If you’ve got that knowledge, it’s a lot easier to do more to help yourself because you understand what’s going on with your body and why you’re in Chicago. (Yes, you’re in Chicago.)

Click here to listen to “Timber” by Pitbull & Ke$ha. This admittedly annoying song usually brings you back to November 2013. Your brain’s not messing with you. You *do* have a cardiologist now. You’re following a diet and exercising regularly to treat hypertension.

Click here to listen to “Happy” by Pharell Williams. If we’re lucky, this will bring you back to February of 2014. That’s where I am right now.

4.) Treat your pain. Look around at the coffee table and the boxes under it. Do you have any marijuana? If so, it will probably be in one of those orange prescription pill containers to keep it airtight. If you can, pack yourself a bowl and smoke it. It will help your headache, your stomach ache, and your anxiety. Seriously.

I know it probably sounds crazy, considering how anti-drug you were raised, but it really is a good idea to smoke some weed. Multiple doctors (reputable psychiatrists and neurologists!) have actually prescribed this for you. You’re not doing anything wrong by smoking it. You’ve got MS and a seizure disorder, and it’s good medicine for both.

5.) Relax. Just find a couch and chill. There’s honestly nothing you can do right now, other than what I’ve listed above, that will be helpful in any capacity, so it’s not worth fretting about. Nothing bad will happen if you don’t clean.

Other important things:
This is not a punishment of any kind. God does not hate you. You didn’t do anything to deserve this. Don’t take a bath. It might feel like a good idea, but getting overheated is dangerous for you.

I hope this helps!

Thoughts about Food.

The Paleo Diet’s doing good things for me.

For a while there, I was not sure whether or not the paleo diet was making any real difference in my life. As of Valentine’s Day, I am sure that it’s doing good things. What significance does Valentine’s Day have? I broke diet for half the weekend. Chocolate. Sushi. Cheeseburger. Pad Thai. I was loving the break… until Saturday night (1 full day into the sugar and wheat binge), when I had so many time-travel seizures that even Adam lost count.

I am now trying to figure out if I have a problem with wheat (since gliadin antibodies are higher in folks with MS, suggesting a sensitivity to wheat), dairy (which would make sense since MS has been linked to consumption of cow’s milk), a combination of the two, or something completely different. I’m not too worried about legumes, since the only legumes I had were crushed peanuts in the pad thai, and that was during Saturday night’s seizure funfest.

I got back to sticking to the diet on Sunday, and had a total of 1 seizure that day, which was a simple partial. (No time travel!)

Splenda – not so sweet.

In the last several days, I’ve also been doing some research on Splenda. There have been a lot of hoaxes and half-true infographics circulating around FB recently, and I’m genuinely worried for my folks, who drink it in beverages regularly. I found a bunch of studies that claim that sucralose is totally safe for you as long as you don’t have too much. I was more concerned with finding peer-reviewed studies that were not funded by the makers of Splenda or a sugar corporation.

Here’s what I found:

Splenda is not an inert compound.
“Sucralose and one of its hydrolysis products were found to be mutagenic at elevated concentrations in several testing methods. Cooking with sucralose at high temperatures was reported to generate chloropropanols, a potentially toxic class of compounds. Both human and rodent studies demonstrated that sucralose may alter glucose, insulin, and glucagon-like peptide 1 (GLP-1) levels. Taken together, these findings indicate that sucralose is not a biologically inert compound.” http://www.tandfonline.com/doi/abs/10.1080/10937404.2013.842523#.UwFpL_ldUkZ

Splenda is immunosupressive.
“The cumulative suppression of Interleukin-6 and Interleukin-10 levels induced by sucralose may contribute to the inability in mounting an effective humoral response when posed with an exogenous threat.” http://www.ncbi.nlm.nih.gov/pubmed/24063614

“[E]xposure to sucralose induces a reduced humoral response that may be associated with adverse effects on the immune system.” http://etd.uwc.ac.za/usrfiles/modules/etd/docs/etd_gen8Srv25Nme4_5780_1319022717.pdf

Splenda can reduce glucose absorption and can increase the presence of cholesterol in your blood.
“It could be concluded that consumption of sucralose didn’t induce oxidative stress, has no effect on insulin, reduce glucose absorption and intensify hypercholesterolemia in STZ-induced diabetic rats. Accordingly it is advised that diabetic people consuming high amount of sucralose must check their lipid profile to avoid diabetic complications.” http://www.scirp.org/journal/PaperInformation.aspx?paperID=34006#.UwFqI_ldUkY

The more Splenda you consume, the higher your likelihood of developing leukemia.
“Dr. Morando Soffritti, director of the Ramazzini Institute in Bologna, Italy, and team fed 843 laboratory mice varying doses of sucralose from when they were fetuses until they died. Post-mortems showed an association between leukemia risk and lifetime sucralose consumption – the more sucralose they consumed, the higher their risk of leukemia.” http://www.medicalnewstoday.com/articles/262475.php

Splenda is a known migraine trigger.
“This observation of a potential causal relationship between sucralose and migraines may be important for physicians to remember this can be a possible trigger during dietary history taking.” http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4610.2006.00543_1.x/abstract?deniedAccessCustomisedMessage=&userIsAuthenticated=false

Splenda can negatively affect your insulin response, if you’re obese and haven’t been regularly using it.
“[S]ucralose affects the glycemic and insulin responses to an oral glucose load in obese people who do not normally consume NNS.” http://care.diabetesjournals.org/content/36/9/2530.short

I don’t think there’s such a thing as a safe artificial sweetener right now. Thankfully, liquid stevia, raw honey, and maple syrup are ok.