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

Cool. Cool cool cool.

Well, that lasted a day…

ohwellI decided it was not worth it to stay off Facebook because I couldn’t listen to my Spotify playlists or publish this blog to all my friends on there. Also, I missed everybody, and it is my primary way to socialize, thanks to MS.

It wasn’t a total loss, though. I did get some graphic design work done yesterday for a good friend and have realized that I want to include things on this blog that I do every day on FB. From now on, 3 Great Things is gonna be a staple here. I’m thinking that the Daily Cute belongs here as well. One last “daily” item that I will be adding is a music video, because I watch at least 1 decent music video a day.

Awesomeness for Thursday, July 31st.

awesome
3 Great Things About Yesterday

  1. Made it back to the gym and put in a half hour on the treadmill without seizing from overheating.
     
  2. After Adam sent back the Skin Balancing Kit I’d purchased from Paula’s Choice (which irritated the everlovin’ hell out of my skin and made it bright red, tight, and embarrassingly flaky), I was able to find good skincare at Walgreens for about half the cost. I will never order skincare from a mail order company ever again. If I can’t swap it out immediately and for free if it doesn’t work for me, I’m not interested. While Paula’s Choice says they refund all your money if you’re not satisfied, you still have to pay to ship it back and then wait up to 2 full months for your refund. 😛  I’m calling it a learning expense.
     
    For any interested parties, I’m now using CeraVe hydrating cleanser, Olay Regenerist micro-sculpting fragrance-free serum, CeraVe SA renewing lotion, and CeraVe PM moisturizer. The only things I’m missing are toner and sunscreen, and since I’m in the apartment 99% of the time, I’m really not that concerned about either.
     
  3. Really enjoyed dinner: baked salmon, asparagus, and rice w/ some moscato wine.

Daily Cute
Today’s Daily Cute comes by way of my friend Fox Circe… so it is, of course, foxy. 🙂



Today’s Earbug
Today’s Earbug is a catchy little ditty (written by a Big Machine’s Aaron Scherz) that, on its surface, empowers women by complaining in the lyrics about how the country music industry has made them into sex objects, but subversively maintains the status quo in the video.

Feminism aside, it’s been stuck in my head all damn day.

Staying cool…

staycool
I still have not settled on a cooling vest. There are too many options out there, and I have no idea which one is right for me. I have, at least, decided against an evaporative cooling vest.

I’ve had a tab open to this one for a full week now. I haven’t gotten it because it’s pricey and goes over your boobs. In my case, that means that it’s going to sit on top of my chest and not under my breasts and against my abdomen (which is where a lot of heat accumulates.) Because of that, I don’t think it’s probably my best bet.

This one looks like it’s adjustable for the female form, but I can’t reasonably go for it because for it to work, you also have to wear a $400 water reservoir and power supply.

The Kool Max Secrets Vest is the least expensive of all of them at $54 and looks to me like it might be the best design for me because I would not need to worry about my chest at all. It’s basically a 5″ long waist-cincher made of cold packs.

The only complication to making my decision is that there are 2 other waist-cincher model vests by the same company that are very similar — the Kool Max Slim Torso Vest that is longer by 1.75″ and contains 2 extra cooling packs for only $10 more, and the Cool58™ Secrets Vest which is the same size as the Kool Max Secrets Vest, but costs about $25 more because the cooling packs do not need to be frozen in order to be effective. Why am I not immediately sold on that one? Because the Cool58 packs do not remain effective as long as the Kool Max packs do. I’m torn.

Do you have a cooling vest? Do you like it? Any thoughts or suggestions are appreciated!

The Quantum Mechanics Of Babymaking

Basic Quantum Mechanics

For those of you who aren’t brushed up on your quantum physics (or fans of the Big Bang Theory), please let me introduce you to the concept of Schrödinger’s cat in a nutshell.

Schrödinger’s experiment involved putting his cat in a sealed box with a flask of poison and a device that had the potential to break the flask of poison, killing the cat. After a certain amount of time you can’t know for sure whether the cat is alive or dead. Thus, quantum mechanics implies that, for the purposes of making any kind of predictions, the cat must be viewed as simultaneously alive and dead. (Basically, you have to consider both possibilities as equally valid.)

The same kind of thinking applies when you are in the process of trying to start a family. During a month when you’ve had sex with your partner in an effort to conceive a baby, but prior to the pee test showing a positive or you getting your period, you are both pregnant (P) and not pregnant (NP). This presents several paradoxes that can cause anxiety.

Do This, Don’t Do This

Currently, my head is spinning with the number of things that I should do if I’m not pregnant, but should not do if I am pregnant. As I am presently both P & NP, I often am at a loss for determining the correct course of action and am sort of shooting from the hip.

Losing Weight
I am currently overweight. My doctors all want me to lose weight. I want to lose weight. How do you achieve this? By limiting caloric intake and maintaining or increasing physical activity.

What are you not supposed to try to do if you’re pregnant? Lose weight or restrict calories.

What am I doing? Recording every bite I eat in a journal and damn near losing my mind wondering whether I’m eating properly. I’m focusing mainly on having good nutrition and not overeating. I aim for between 1400 and 1600 calories a day. I’m taking prenatal vitamins every day and making sure that I drink enough water.  I’m honestly hoping to continue to lose weight until I have a pregnancy test that comes back officially saying “positive.”

Weightlifting
One of the best ways to increase your caloric burn while also keeping your body healthy is to lift weights. If you are not pregnant, there’s no question that weightlifting is good for you.

If you’re pregnant, the answer isn’t quite so clear. There are people who say that lifting weights while pregnant is a good thing. There are people who say it’s bad.

What am I doing? Following the advice of the camp that is in favor of weight lifting with resistance machines during pregnancy, while listening to my body and not pushing for gains, but rather endurance. I also am avoiding plank pose. (Though to be honest, that’s got way more to do with laziness than anything else.)

Protecting My Nervous System
I have MS. This means that I need to be taking a disease modifying drug (DMD) to slow the progression of the disease if I’m not pregnant.

The only DMD that is acceptable to be on while you are actively trying to conceive is Copaxone, and most neurologists have you quit taking it once you are pregnant. I no longer take Copaxone because my neurologist determined that it was doing absolutely nothing for me, so it’s not even an option.

What am I doing? I’m not taking any DMDs. This leads to a lot of anxiety for me. On the one hand, I want to conceive and carry a healthy baby — and I feel healthier and better because I’m not dealing with the side effects of medications that suppress my immune system. On the other hand, I’m having a marked increase in seizure activity, fatigue, and muscle spasticity.

Fostering Kittens
If you’re not pregnant, fostering kittens is rewarding and fun. It’s something I’ve done for many years that brings me a great deal of joy, not only from my interactions with the kittens but from the knowledge that, despite my disability, I’m making a positive difference in the world.

If you are pregnant, it can be dangerous to deal with kittens because of the danger of toxoplasmosis.

What am I doing? Sadly, even though Adam has said he’ll take care of scooping the litter box for the duration — we’re taking a break from kitten fostering. Better safe than sorry.

Eating Sushi or having Alcohol in Moderation
There are actually scientific studies that suggest that light drinking while pregnant can be a good thing. At the very least, drinking as little as I do and as infrequently as normal will not harm the kid.

If you’re Japanese, sushi is considered good neonatal nutrition.

If you’re American, you’re not supposed to have any sushi or alcohol. And it sucks.

What am I doing? So far, not drinking or having sushi. And it’s making me cranky.

The best things in life are not safe for pregnancy.

I just want to take a moment to recognize the things that I deeply appreciate that I am foregoing while in this quantum state… the things that if I’m actually not pregnant, I’m missing out on for no other reason than caution.

  • Medical cannabis to help with muscle spasms and neuropathic pain… I miss you, bud.
  • Aleve… because Tylenol doesn’t actually do shit.
  • 5 Hour Energy/Caffeine… Naps are just not as effective as you are.
  • Afrin… Nasal washes just aren’t the same, but at least they do something short-term.
  • Soft cheeses… feta, I miss you the most.

I hope this is all worth it.

An Unexpected Change of Perspective

Yesterday, at the gym (because, really, it would be way too convenient for this shit to happen at home), I had a “time travel” seizure. (Let’s shorten that to TTS.) I was not over-heated. I did not have an aura before it. I had barely even started working out. Honestly, I don’t know what caused it. Could be hormones. Could just be MS fucking with me. But the cause isn’t the reason I’m talking about this particular seizure. I bring it up because it’s the first time I’ve had a TTS where I’ve woken up believing I was at the beginning of my MS journey.

2007 Rachael, Welcome To 2014.

Usually, when I have a TTS, music will bring me back pretty quickly. That was not the case yesterday.

Several things were thrown at me all at once, upon the combination of waking up confused and music not helping. “New” information: I got married to Adam. I regularly have seizures, and those seizures are definitely a progression from “the nods” that I was experiencing in 2007. Oh, and I have MS, not narcolepsy. I live in Chicago, of all places (which was my least favorite city in the world prior to being forced to live here), and I’ve never taken the IL bar exam. I graduated law school, but never became an attorney. I have no job at all, and I have gotten fat. (Nevermind the fact that I’ve lost 20 pounds in the last 6 months. Right then, it didn’t matter. 2007 Rae was in the best shape of her life…and was 50 pounds lighter than I am now.)

I was *super-pissed*. And I don’t mean I was just upset and stewing. I was actually shouting mad. I grieved everything all at once: No career as a film and music attorney. No interns looking up to me. No submissives to toy with. No clubs to perform in. No beach. No Los Angeles. No free shows because “DO YOU KNOW WHO I AM?” No pride in my body. No driving. No “dream life.”

And sadly, because I was, for all intents and purposes, 2007 Rae, I had none of the very necessary psychological coping skills I’ve developed over the last 7 years.

The number of times the phrase, “I SHOULD JUST KILL MYSELF” went through my head were innumerable and intensely painful.

Fortunately, when Adam put on “Timber” by Ke$ha & Pitbull, I remembered a Bulls game… and then a cardiology appointment… and then just about everything up through November of last year. And I felt very embarrassed.

We Are Our Harshest Critics.

When I fully came back to myself, about an hour or so later, several things occurred to me: that 2007 Rachael was shallow, power-hungry, and very unforgiving… that I have gained a lot of inner strength, patience, compassion, and empathy through the hard work that I put in with several therapists… that I don’t really like who I was as a person back then, even if I thought I was cool. I wasn’t cool. I was trying too hard, all the time.

Honestly, I don’t even know if 2007 and 2014 Rachael would be friends with one another. 2007 Rachael was so disenchanted with the world that she had questionable ethics with regard to how she treated herself and others. She put “reaching for her dreams” above everything and everyone. And her dreams? They had everything to do with control. The dream was to be a taste-maker, somehow being able to promote the bands I liked to stardom. The dream was to become completely independent and rich, so I’d never have to depend on anyone else for money or care. Heck, even though Adam and I had already moved in together at that point, she never thought it would last. The words out of her mouth last night? “I never thought we’d stay together. You’re too nice.” I’m glad I was wrong.

Being Okay With Today

Whenever I time travel, the insights I take away from it tend to echo in my mind for a while, really shaking up my perspective on the way I’m living. I always have to question those thoughts for truth.

When I found out that I wasn’t an attorney, and that I don’t have a career, the words out of my mouth were, “I don’t help anyone!” Adam was quick to correct me. He said that I make a positive difference with this blog. He said I make a difference in the lives of my friends who I interact with on Facebook and PatientsLikeMe. He said I make a positive difference in his life.

Honestly, I don’t know how I could do life without Adam. And that scares the shit out of me. Hold onto anything too tightly, and it will slip from your grasp. The fact that he stays with me despite this shit boggles my mind. I’m not sure what I ever did to deserve this kind of unconditional love, but I’m deeply and profoundly appreciative of it.

And really, after revisiting my 2007 self, I don’t totally understand how he fell for me in the first place. Sometimes, it’s hard to remember that I am not the sum of my problems. I guess there was a lot of good there that I’m presently ignoring. I was actually living up to what I thought was cool… doing yoga several times a week, going to farmers markets, being ambitious and persistent with regard to law school, writing regularly in my LJ, clubbing with friends, hiking, and coloring my hair blue. I could have done a lot worse.

So… what now?

This just leaves me wondering what I can do nowadays to feel as good about myself as I did then. I want to genuinely believe I’m cool, and that’s something only I can control.

So what’s cool to me? Being creative. Being social. Being helpful. Being healthy.

I know the first thing that came to mind was writing more regularly in this blog, and about more things than just how seizures and MS affect me. I used to live life for the stories that I’d tell on Live Journal. That wasn’t necessarily a bad way of living. It got me out of the house on days when I otherwise would have just turned on the TV and zoned out.

There’s nothing terribly interesting about spending my days on the couch, scrolling through Facebook for hours at a time, doing chores, hitting the gym, and then watching TV until it’s time to sleep – over and over again. Moreover, there’s no good reason for me to be living that way. It doesn’t exactly scream “joi de vivre.”

As far as physical activities go, I know I’m headed in the right direction with our 3-4 x a week gym habit, but I really miss yoga. I hope I can find a place where they don’t crank up the heat and don’t charge over $100 a month. Maybe I just need to find some good routines online. Suggestions are both welcomed and appreciated.

I also miss the health benefits and social aspects of Hike the Geek. Heck, Reichart even said a few years ago that if I put together a HtG group here in Chicago, he’d join us when he’s in town… but in the few months since I’ve regained the ability to hike, it’s been too hot outside for me to do so.

I keep talking about buying a cooling vest, but I haven’t pulled the trigger. I’m not sure why, other than I keep thinking I can create one for myself that will be more cost effective, since most quality cooling vests are both ugly and pricey. (We’re talking $125-$450.) That being said, being cheap with myself has done nothing but create stress for me recently, and nobody has time for that nonsense. I certainly shouldn’t let a couple hundred bucks hold me back from being active, being with friends, and being happy.

I guess, if I’m taking anything positive away from yesterday’s experience, it’s remembering that I’m both in control of being awesome and am happy to do the work.

Fitness & MS… My Complicated Relationship

In the 3 years prior to my MS diagnosis, I lost 70 pounds. I didn’t count calories. I wasn’t on any particular diet. I was single, and had decided that when I had nothing else to do (work, school, chores, or hanging with friends) that I would spend my time at the gym, doing whatever class was available or swimming. It kept me from feeling sorry for myself — especially when I was living with my grandfather right after the divorce.

When I was diagnosed in 2007, I was at my absolute healthiest. I even was in a great relationship with the guy who became my husband. I worked out at least every other day, and I was at my lowest weight since freshman year of high school, when I marched for about 3 hours a day, 4 days a week with a 30 pound bass drum. I was a mere 5 pounds away from a “healthy” BMI.

The diagnosis didn’t stop me from working out… but about a year later, seizures most certainly did. I was afraid of falling off the cardio machines. I was afraid of embarrassing myself in yoga class. I was afraid of falling down on a walk. And none of this was baseless fear. I was having hundreds of seizures a day at that point.

This lead to the only logical thing it could lead to: weight gain… and not a little bit either. I managed to gain it *all* back.

The Paleo Diet & Dances with Orthorexia

When one of my good friends found out that I was diagnosed with MS, she suggested that I start following the Paleo Diet. I laughed her off for a couple of years. It seemed like way more work than it was worth, and there was no reputable, repeatable scientific research that suggested that it would actually help me in any way.

Fast-forward to a couple of years after my seizure disorder diagnosis, and I was desperate for a way to lose weight that didn’t involve exercise. I started compiling a cookbook for myself that later became The Paleo Compendium.

My repeated attempts to adhere to the strict diet are well documented on this blog. For a short period of time in 2011, I was successful. But for the most part, it was a challenge that caused me to think about food almost all day, every day. When my therapist mentioned the word, “orthorexia,” I had never heard of it before… but I had many of the symptoms.

I worried constantly about what I was putting in my mouth. I wanted so badly to get better, and all of the propaganda that I was reading said that food was the only answer. Not medication. Not exercise. Just food. I mean, major news networks were reporting that Dr. Wahls “cured” herself with her protocol & the paleo diet. (Nevermind the fact that, in reality, she did not cure herself, but rather significantly decreased the severity of her symptoms.) If I wasn’t following that diet, I must have wanted to deal with the deterioration I was experiencing from MS, right?

I constantly worried that I was causing my MS to be worse by not being strict enough. If I “caved” and ate food at a restaurant or my in-laws’ house, I felt like a horrible person – a failure with no self-control who was causing misery to myself and anyone who cared about me. (My loving, wonderful in-laws are Polish. If there’s not bread, pierogi, or some preparation of potatoes, it’s just not a meal. Saying “no” to their hospitality always made me sad and embarrassed.)

I spent days (not just hours, but actual days at a time) adding recipes to the Compendium. I spent hours every week planning menus and making grocery lists. I started asking Adam if we could go longer between visits to his parents’ house, just so I could avoid looking my mother-in-law in the eye and telling her that I couldn’t eat whatever she’d made. I became increasingly depressed by the fact that even though I was doing everything I could do to control my eating, I was still experiencing MS symptoms. I felt guilty for craving bread, even after I acknowledged that wheat is addictive.

I was so embarrassed about having a “new” eating disorder that I didn’t even tell my husband about it… or anyone else, for that matter. It wasn’t until a friend posted about orthorexia on FB today that I felt that it was important to share my experience with others. It was only today, after several months off of the diet and 3 weeks of working with a FitBit that’s making me crazy in a whole other way, that I felt like I should come out.

The Paleo Diet is especially hard to follow for those of us with MS because of fatigue. So tired you can barely move? Tough. You can’t pick up any convenience foods. Everything you eat has to be made from scratch. Raw fruits and veggies and nitrate-free lunch meats are convenience foods to folks who are on the paleo diet.

“Eating clean” meant putting more effort into making food every day than I used to put into food prep for an entire week, not to mention the avalanche of dishes that it created every day. I would calm myself by telling myself that I was doing what I could do to keep myself as healthy as I could, despite MS. I would tell myself I was doing this for my husband, for my family, for my friends. I was hopeful that I was keeping the really bad stuff at bay.

But then, even though I was eating clean, I had an MS exacerbation where I lost feeling in my hands. It forced me to acknowledge that I cannot control my MS. Not by diet. Not by medication. MS is simply uncontrollable… but orthorexia is not. When I realized that eating paleo wasn’t stopping the MS from doing its worst, I gave it up for good. I’m pretty sure Adam and I wouldn’t have made it through that last exacerbation without Grubhub & Delivery.com.

That’s not to say that nothing good came from the experience, nor is it to say that you shouldn’t follow the paleo diet if you feel it’s right for you. There are many people who have experienced a decrease in symptoms due to its focus on anti-inflammatory foods. I know, at the very least, eating more nutrient dense food helped abate some of my fatigue.

I am happy to say that because of my time trying to follow the diet, I’ve substantially increased my intake of vegetables and still keep my grain consumption much lower than I used to. Fewer sandwiches, more salads. Fewer bagels, more smoothies. Honestly, just yesterday, I picked up a loaf of 100% whole wheat bread and felt deeply guilty…but I enjoyed the sandwich I had for lunch. Baby steps.

Working Out & Pseudoexacerbations

Regardless of diet, exercise is important for people with MS. It helps fight fatigue and depression, keeps your heart healthier, and helps regulate bowel and bladder function. Honestly, there’s no downside to exercising besides being sore the next day. The only problem is that it’s scary.

Why’s it scary? Because it can easily make you feel like crap. Uhthoff’s phenomenon causes MS symptoms to show up temporarily when your body temperature rises by even half a degree for some people… and exercise, well, it raises your body temperature. The good part of Uhthoff’s phenomenon, however, is that once your body temperature gets back to normal, the MS wonkiness stops. Because of this, I’ve decided that it’s well past time that I invest in a cooling vest.

When I looked at the scale in 2012 and saw a number that was higher than I’ve ever seen, I decided that I could no longer afford the “luxury” of being afraid of working out. Since my seizures are entirely caused by MS, this means that I have a disproportionate amount of seizures at the gym.

Fortunately, I’ve stopped worrying about what will happen if I seize while on a machine. I can tell you exactly what will happen because it’s happened so many times I can’t even keep count anymore. Adam will pull me off the machine and I will sit down until I feel better enough to walk to the car, and then I’ll try again the next day.

I’d hoped that I would be able to lose weight as quickly as I did in 2004-2007, especially since I was dieting and exercising, but that just hasn’t been the case. I started back at the gym in 2012, and here in 2014, I’ve only lost about 20 pounds — and 10 of those were in the last month alone.

Curious what changed in the last month or so? I stopped taking all medications other than my blood pressure medication and got a FitBit One.

FitBit Makes Me Crazy, But It’s Effective.

As I mentioned in a previous entry, I received a FitBit One as a part of a study on the effectiveness of activity trackers on improving MS symptoms. So, for the last 3 weeks, I’ve been logging all my foods in MyFitnessPal and all of my activities on Fitbit’s website.

Yesterday, I stepped on the scale, expecting to see no change. FitBit had told me that I was only at a deficit of 637 calories for the week. I was shocked to find that instead, I’d dropped another 4 pounds. FitBit’s calculations had to be wrong. I realized that all of the information it provides is an estimation at best. I have come to the conclusion that the simple act of food and activity journaling is enough to make me mindful to the point that I change my habits to conform as well as I possibly can with my goals. This little device has shown itself to be as helpful for my weight loss journey as meditation has been to my overall well-being.

Because I really want to get back down to the weight I was when I was diagnosed, I’m going to keep using the device even now that the study is over. Even if counting calories makes me feel crazy some days, looking in the mirror and hating what I see consistently makes me sad. At the end of the day, I’d rather be crazy and hopeful than sad and hopeless.

Then again, I fully admit this might be about controlling what I can in a life filled with things I cannot control. *shrug* As long as it gets me to a healthy BMI, and it doesn’t negatively affect my relationships with the people I love, I don’t really care.

I Would Like A Break, Please.

My MS is better. My hypertension is worse.

Health has been a struggle for me over the last month. MS relapse. Tons of seizures. And now, because I haven’t been able to exercise, and we’ve been eating convenience foods because it’s just too much work to do all the dishes and cook on top of dealing with regular household chores and being ill. Thus, my hypertension is out of control.

Adam – 1, Seizures – 0.
My husband, being the observant person he is, helped me realize that the amlodipine I’ve been taking to help control my blood pressure has been causing me seizures. It’s a side effect that happens to fewer than 1% of people who take it. So, I stopped taking it yesterday. It didn’t really seem to be helping me anyway, considering that my blood pressure WITH the drug in my system was 167/102 first thing in the morning.

Today, with no amlodipine in my system, it was 158/111, and I haven’t had any seizures. I would rather have no seizures and high blood pressure than to have seizures and high blood pressure. Quitting that med actually improved my health. 😛

I have an appointment with my cardiologist tomorrow afternoon. I have MRIs on Friday afternoon.

I don’t want to sound like I’m unappreciative of modern medicine, but it’d be super-great if my medications didn’t cause more problems than they helped.

It’d be even better if I could just be healthy. Seriously. Any time now.

Self-Compassion Level: Critical

One of the things that I’ve had to work intensely on since being diagnosed with MS is self-compassion.

I am a ruthless tyrant to myself far more often than I’m friendly, and I’m not proud of that. I mean, really, who would make herself take the CA bar exam twice while having MS and dealing with 30+ seizures a day, and then convince herself that failing that exam is evidence that she doesn’t deserve to live? Someone who has absolutely no compassion for herself. None.

It’s the same unhealthy mindset that lets a person believe that they deserve whatever abuse they’re dished out, by anyone. It’s not healthy. It smacks of low self-esteem.

When I can’t do chores or exercise, instead of feeling sorry for myself, instead of getting angry at MS or seizure disorder, I tend to get angry with myself. It’s as though I genuinely believe that I can do anything I put my mind to, and that all I need is a positive attitude… but positive attitude doesn’t cure paresthesia, muscle cramping, weakness in your limbs, or fatigue.

When I’m frustrated and angry, I forget that I didn’t choose MS. I’ve had to acknowledge that if I hold myself responsible for all the bullshit caused by a disease that I didn’t choose and that science doesn’t know the cause of, I’m actually engaging in victim-blaming. I’m being abusive to myself.

It’s too easy for me to blame myself for things I can’t control because it makes me feel like I have some control, when I don’t. And that combo of Automatic Negative Thoughts is called “Emotional Reasoning” with a side of “Personalization” *sigh* At least I recognize it.

Keeping It Real

The truth of the matter is that I’m having a hard time grieving for the life I had hoped for and worked towards. I’m stuck in the bargaining phase. I keep thinking stupid, irrational things — like, if I eat healthy enough and I exercise enough, maybe MS will stop bothering me forever, and I can try to have a normal life again. One where I can drive a car and have a job… or even go out for more than an hour or two by myself, safely.

I see stories like Dr. Wahls or Tanya Penny or Kristen – stories of women who have, one way or another, managed to improve their physical condition despite MS, who think that if you do the same things they do, your MS symptoms will vanish. Their stories used to inspire me to make positive changes in my life, but honestly, at this point, they just make me angry as hell. And jealous to boot.

Why does it make me so angry? Because they all try to tell you that through behavioral modification (eating paleo, doing yoga, “releasing stress”), you can stop your suffering. They suggest that you can control this disease through willpower. Their points of view make you responsible for the way that MS has been ruining your life. It means that *you* are the problem and not MS.

Do I think it’s a good idea to do yoga? Absolutely. Exercise is important!

Do I think it’s a good idea to eat paleo? Yes! Eating less processed food, sugars, and salts is good for almost anyone. (Folks with low blood pressure need salt, though.)

Do I think you should strive to be stress-free? Of course. Stress is awful. Everyone should try to have less stress. In a perfect world, having nothing to do would mean you were stress-free, but not having things to do causes stress too!

But has doing any or all of those things made my MS better at all? No. Not even kind of. Not ever.

It’s like being flipped the middle finger by reality.

The Shame/Guilt Pit

So what do you do when you have first been forced to admit that you’re not in control of MS (so that you show proper self-compassion and are not abusing yourself), and then are continually bombarded by the message “You can control your MS” by people who are just plain fucking lucky?

You constantly question yourself. You try everything you can, whether science backs it or not. And when nothing makes any difference, you get to feel the disappointment of failing yourself on a fundamental level.

If you haven’t tried absolutely everything, you get to feel like you’re causing the intense, chronic pain and muscle spasms. You get to feel guilty about being cared for and guilty for whatever emotional pain you’ve caused your friends and family by simply enduring this — because no one would have to endure this with you, if you would just get on with the business of curing yourself.

So am I a victim of MS? Or do I buy into the often proudly-touted ideal that we are not victims — that somehow, magically, I can kick MS’s ass, and that I am just not doing enough to make it stop?

Do I buy into the idea that I am a knowing accomplice to my autoimmune function, or do I admit that I am being forced to deal with its fallout? Is it really a good idea to choose to take responsibility for something I cannot control by convincing myself that contrary to medical scientific evidence, I can control it? Nope. That’s delusional.

The troll in my inner monologue is constantly asking me, “WHY DON’T YOU MAKE YOURSELF BETTER ALREADY, RAE?! CLEARLY THIS IS YOUR FAULT.”

Y U NO CURE MS?!?

Y U NO CURE?!?!?

But it’s not my fault. I am not the bad guy. If I were, we’d have some idea as to why people get MS. We’d know how to avoid it.

Maybe I am an asshole for thinking that until anyone can provide repeatable medical evidence that their methods stop MS in its tracks, they should shut the fuck up and stop pretending that they have a cure. Shaming millions of people who are suffering with a frightening disease for not acting like you do is not ok. At least Dr. Wahls is doing the research studies…

If there were a real, proven way to make MS stop, I’d do whatever it took. I am beyond ready to stop feeling bad.

Owning my Bullshit

Learning To Accept Compliments

Yesterday, I wrote about how some friends had called me “an inspiration” and I took it to mean that they felt intensely sorry for me. Fortunately, my mom disagreed with my assessment and called me to tell me as much. She made me really think about it, and the truth of the matter is that I was projecting my own self-pity onto their statements.

It’s very hard, when I’m feeling bad about myself and am physically unwell, to accept compliments. Because I’m trapped in a mindset of low self-esteem and am feeling sad, I can’t believe any compliment would be sincere. Why? Because I’m feeling bad. And if I’m feeling bad, I must be bad, right? Wrong!

Confusing how you feel with how you actually are is one of the automatic negative thoughts that I learned to challenge while in therapy last year. It’s called Emotional Reasoning. Emotional reasoning is what occurs when we assume that because we feel a certain way, what we think/feel must be true. For example: I feel embarrassed so I must be an embarrassment.

Putting the “reason” back in Emotional Reasoning.

The only way to fight emotional reasoning is with rationality. You have to look at facts vs. feelings…

And the truth of the matter is that I have no good reason to feel like I’m anything less than awesome.

I have plenty of bad reasons — like the magical thinking that enables me to believe that I could have somehow avoided having MS and a seizure disorder if I had only done something differently in life. And that because I didn’t know to do that “thing” differently, I’ve brought the sadness and difficulty of MS and seizure disorder down on myself, and worse yet, I’ve forced my family and friends to deal with it with me. (Oh, look another ANT! Personalization. Blaming myself for something I can’t control. Moreover, I can’t force anyone to be supportive.)

Ooh, or the undeniable shame that I feel for being over-educated and unemployed. (ANT: Disqualifying the Positive.) Having a job isn’t what makes someone awesome, and even if it were, I have a job! I’m a homemaker. It just doesn’t pay cash.

If I’m going to allow myself to think like someone who can’t self-validate, I don’t have far to look for positive reinforcement. My friends and family are incredibly supportive. My husband is happy with me, and he doesn’t base his love for me on the things that I do or the money that I earn. I’m his chosen life companion, and I know that he deeply appreciates my efforts when it comes to keeping the house clean and making food happen when I’m feeling well enough.

What’s actually happening is that I’m putting too much stock into what I think. I’m a terrible bully to myself. I am pressuring myself to do more because I want to do more, and I believe that I can do more. And both of those are positive things. They’re not excuses for self-berating.

Being Mindful

What this experience has taught me is that recently, I’m not spending enough time policing my thoughts. I’m letting the Automatic Negative Thoughts take the wheel, and I’m not meditating enough. I’m not questioning my inner voice for truth. I need to spend some time on Calm.com. It’s been way too long.

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!