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.

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600th Post!

I’ve wanted to make a post for the past several days, but for whatever reason, writing just hasn’t happened. There’s been a lot going on.

First visit with the high-risk pregnancy specialist

Last week, Adam and I saw the high-risk pregnancy doctor, in the hopes that we’d be cleared to start trying for a family. Unfortunately, my blood pressure was insane at the visit. 174/95. Crazy, right? The doc wants me to lose 20 pounds and get my blood pressure under control before I see him again.

Challenge Accepted.

Doubled the hypertension medication. Got back to the gym. Fortunately, the relapse is over, and because of that, seizures aren’t stopping me from exercising. Yesterday, I was finally able to do 45 minutes of cardio again. We also keep saying that we’re going to go paleo again. We did well yesterday, but tonight, we’re going to a Blackhawks playoff game… so I guess we’re aiming for 80/20 this week.

Awesome Find: Once A Month Cooking

One of my friends introduced me to Once A Month Cooking, which has more than 2 years worth of paleo menus and recipes already made. Talk about a time-saver.

And if that weren’t enough, there are other sites for once a month cooking too, such as this Whole 30 Freezer Menu, and this article about how to freezer-cook in the first place.

Big 600!

And apparently, this is my 600th post here. That blows my mind.

Hope you’re all doing well!

Make The Most Of Every Day.

Nothing throws your worldview into sharp perspective like losing someone you care about.

This morning, one of my friends from college died. He was only 35. He also happened to be the best guitarist I’d ever heard play (in person) in my entire life. And that’s saying something, honestly, because we went to Berklee College of Music and there is no shortage of amazing guitar players there.

Officially, the cause of death was that they couldn’t get his blood to clot… but he was in the hospital in the first place because of health complications caused by alcoholism. He’d struggled with it for years, but the last time we’d talked, he had things under control.

Alcoholism and RRMS are similar in many respects. You have to deal with them for the rest of your life. There are times of remission and there are times of relapse. It’s a rollercoaster you can’t get off or ignore. Alcohol addiction is a disease… it’s not all about choice. It’s actually a neurological disorder, just like MS. Unlike, MS, however, alcoholism will absolutely kill you. Alcohol doesn’t care who you are or what you do. It just poisons you. It just fucking sucks.

Shane’s death especially sucks because of how much inspiration he gave others just by being himself. He was a rock star. Literally. He played guitar on tour for Korn! He had 2 awesome metal bands of his own, Schwarzenator & stOrk that played in Los Angeles, and he taught guitar lessons to folks all over the world using Skype.

I remember meeting him. He was practicing guitar, sitting outside the classroom before ear training. I thought he was way too hot and talented to talk to. Fortunately, he didn’t think I was unapproachable. We even had mutual friends, and it was only the first week of our freshman year. I got to know him, and found out that he was just as big a goof as I am. Actually, goofier at times. 🙂

When I made the switch from percussion to voice, it was Shane who helped me get over nearly crippling stage fright. He didn’t tell me to think about people being naked. He didn’t tell me to stare at a place on the back wall. He didn’t even tell me to pretend that I thought I was awesome. He said (and of course I’m paraphrasing), “Everybody here (Berklee) thinks they suck. That’s why we practice so much. Focus on the music because that’s what it’s about. It’s not about you.”

When I was totally confused in Harmony 4, Shane was the one who explained chord scales to me. I never would have graduated without his help. Heck, aside from ear training and harmony classes that we had together, the guy sat next to me at our college graduation and walked right behind me when we were picking up our degrees. I told him that he should wear pink more often. 🙂 (When you graduate with a degree in music, you get a pink sash to wear.)

8 years after graduation, in what felt like another lifetime entirely, I was lucky enough to spend some time with him again. He helped me learn to play guitar and encouraged me to keep at it, even when I was dealing with the worst part of learning to live with seizure disorder. I remember feeling so embarrassed while I was seizing in his living room. He reminded me that he graduated with a degree in music therapy, and that I wasn’t the first person he’d seen have a seizure. He said that if anything can help me feel more “in control,” it would be practicing.

I feel very lucky to have had him in my life.

Random Message Generator: For The Win

There’s this random message generator on Facebook called “God Wants You To Know.” Occasionally, I click on it for shits and giggles. I do this because I very firmly believe that everyone and everything in creation is God. God is, in my mind, comprised of the totality of existence. Because of that, I find myself smirking at this random message generator, occasionally thinking that maybe it *is* telling me what I need to know at a certain moment.

Today, its message was this:

“[I]t’s time to STOP going through the motions of living, and START living.”

If that wasn’t a bit on-the-nose for today, I don’t know what is. There’s nothing like the death of a friend to remind you both of your own mortality and the importance of living each day to the fullest.

Sometimes, while dealing with MS and seizure disorder, making goals and being creative feels impossible. I think it’s important, though, that we never let ourselves stop dreaming.

Daring to Dream

I know that I try to live every day the best that I can. Sometimes, just existing is a tough gig. But just existing isn’t why we’re here.

My dreams right now are fairly straightforward, and I’m doing my best to achieve those dreams.

I want to be a mother. Been working towards that for a couple of years now. Day after tomorrow, I actually have an appointment with a high-risk pregnancy OB, and I’ve just finished my last pack of birth control pills. The only medication left to stop before conception is Prilosec, and I’m probably gonna stop taking that at the end of the week.

I want to travel. There are places I’ve always wanted to go, and one of the best things that Adam and I made when we were dating was our “world tour” plan. Sure, it’ll take a lifetime to see even half of the places on our list, but I’m game to try. I want to see New Zealand, Australia, Italy, Greece, France, and Japan at some point. I wouldn’t hate spending more time in the tropics either.

I want to be happy with my body. I say this as someone who has felt like she has been at war with her body since elementary school. I go to the gym any day that I’m well enough to do so. I struggle with what’s “right” to eat. I hate looking in the mirror. I feel like a weirdo when I wear makeup, but I feel like I’m supposed to wear it or else I’m not feminine enough. Body issues blow. It’s a genuine dream of mine to one day be happy with my body as it is.

I want to create art of lasting value. I don’t know whether or not this blog counts as art. More often than not, it feels like some sort of confessional. I songwrite from time to time, but I stubbornly refuse to write out the music to any of it. I feel like the computer should be able to “hear” it and make the notation happen. I can’t explain it. It’s a weird bit of resistance that I’ve struggled against since high school. More than that, though, I don’t know if my songs are a real contribution to the world. Maybe my big contribution is a novel. I’ve started and tossed 3 books so far, all of them with about 3 chapters written. Hell, maybe my future kids are the real art project. Whatever the case, I just want to be remembered for something good.

I want to inspire people to live life as well as they possibly can by living my life as well as I can. I want for folks to be able to say that because they knew me, their lives were better. I don’t want to always be complaining about MS. I want to be able to show people that they don’t need to hold themselves back from happiness because of chronic illness.

Those aren’t even close to the dreams I had as a kid. Back then, I wanted to be a rockstar. I wanted my music to magically change the world into a kinder and cooler place. I wanted people to carry my songs in their hearts.

In college, I saw how many incredibly talented musicians had the exact same dream as me… so my dream changed. I learned all about how the music business worked. I wanted to start a business that would revolutionize the music industry. I wanted to promote indie music until it became mainstream. I wanted to be a multi-millionaire and to have enough money to be able to make lasting, positive changes in politics.

When I was in law school, I wanted to be able to protect people who couldn’t protect themselves. I wanted to make it possible for folks who had the talent, drive, and passion to create art to do so without fear of being screwed over. I wanted to enable people to film their movies and record albums.

My dreams nowadays seem banal in comparison. I just really want to be happy and healthy. And I don’t think that’s necessarily a bad thing. I think, instead, maybe it’s a sign of maturity.

Today, I’m just really grateful to still be alive. When I consider how many times I’ve struggled with suicidal ideation, I’m grateful for all of the love and support that kept me going to therapy until I conquered it. I’m grateful to still have the chance to make a positive difference. I’m glad to be living the life I have, and I’m going to keep doing my best to make the most of it.

Let’s Try This A Different Way…

Being An Empty Vessel

One of the things I learned while translating the Tao De Ching was the importance of emptiness… that a vase or purse or cup only has value because its emptiness allows it to hold things. There’s been a lot of emptiness in my life recently because I haven’t been able to do much besides being online and watching stuff on TV. Here and there, I’ve berated myself because I feel like I should be doing more… as if reading books or practicing guitar has more value. (They don’t.) I’ve been frustrated and depressed because of how life has been during this relapse, but I’m starting to see the value in how I’ve been spending my time.

Are We Done Relapsing Yet?

It’s gotten to the point that I am having a hard time remembering what it is like to be healthy enough to go to the gym and actually work out for more than 15 minutes. It sucks, because I love working out, and I’m starting to gain weight. Super uncool. Still, gaining only 4 pounds after 3 medrol dose packs isn’t bad.

Actually, the truth is that working out is always frustrating to me… but I love the feeling of overcoming my own whining. I love beating the Blerch. I love feeling proud of myself for having done something difficult. And some days, just getting through the day is one of those things.

Back before I was diagnosed with seizure disorder, I used to experience this thing we called “the nods.” I would blink uncontrollably and fall asleep for a few moments. This could happen several times an hour. Doctors were talking with me about a diagnosis of narcolepsy. Later on, I found out that these were seizures.

I haven’t had this particular kind of seizure in years. Yesterday, however, I couldn’t escape them. I kept falling asleep over and over again. I felt so sick that I couldn’t even handle being in a car. From around 11 a.m. until we went to bed around 11 p.m., every several minutes, I’d have a seizure.

Fortunately, I’m only having simple partial facial seizures today. Still, everything in my body feels inflamed. My legs hurt. My back hurts. My skin hurts. I keep trying to tell myself that hurting is preferable to not feeling. Invalidating the emotions that come with chronic pain, however, does not help it stop. And my choice is to hurt and be awake or smoke some bud and be overcome by fatigue and sleep most of the day.

I remember when I used to have a long list of daily goals. Cleaning, laundry, studying, shopping, working out… I’d do all 5 of those things in a day and think nothing of it. After 6 weeks of relapsing, I have cut myself off at 1 goal a day.

Today, my goal is to get as much laundry clean as I can. I’m sure getting off my butt and actually putting up a load will improve the likelihood of achieving that goal.

Best Foster Kitten EVAR

A few months ago, Adam and I took in a litter of 4 black kittens. They were amazingly sweet and awesome to care for. We had them for a month before they went to PetSmart so they could be adopted. Only 1 of them has not been adopted yet. His name is Han (as in Han Solo), and he is the first foster kitten I’ve had that has made me actually, seriously think that I should give up fostering and just adopt him… because they don’t make better cats.

My Snugglebuddy

My Snugglebuddy, Han

What’s so special about this one? He’s a perfect companion. Yesterday, while I was having the nods, I fell asleep on the couch watching “The Croods,” and when I woke up, Han was in my arms, snuggled up close to me like a teddybear.

How can you say "No" to this face?!?

How can you say “No” to this face?!?

This kitty wants to be next to me all the time, and he even understands where on a laptop to walk and where not to. He’s super affectionate, and only gets vocal when we put him in the bathroom (instead of the crate) because we’re leaving the house or going to sleep. I think he might have separation anxiety, actually.

And if that weren’t enough, he and Brisco play well together. I have a feeling that if we don’t adopt him, I’ll end up regretting it… I’ve already broken the first rule of fostering: don’t fall in love. I can’t help but love this guy… even his annoying qualities. He tries to catch things on TV. It drives Adam nuts. It makes me giggle.

So, yeah…

I’m trying really hard to stay positive. I mean, I can feel my hands… so that’s pretty much all that matters to me. I just keep losing perspective.

Truthfully, I’ve been watching a lot of girlie schlock on Netflix…terrible Katherine Heigl movies… Drop Dead DivaMean Girls… and I’m starting to realize that it’s not such a great idea. When I’m not feeling bad, physically, I’ve been feeling disappointed in myself for having no sense of style, still being heavy, and not regularly wearing makeup.

It’s not necessarily a bad thing, recognizing that. It’s inspired me to create a hidden style board on Pinterest, and I found 3 sites with clothes that I actually like in plus sizes (IGIGI, Ashley Stewart, and SWAK). Don’t get me wrong, I’m not happy or proud to once again have to admit to myself that I’m in the Lane Bryant club, but I’ve got to clothe this body, and at least I’ve been able to find clothes I don’t hate.

I’m tired of not feeling good about myself. The good thing is, that’s something that’s totally in my control. No one can change my opinion about me but me.

I mean, MS takes a lot from you, but at least it doesn’t make you look bad. It just makes it hard to exercise some days…and it’s made me permanently unable to shower until Adam comes home. Truly accepting that I have MS means I need to be more accepting of myself and stop holding myself to a standard that even healthy people have a hard time achieving.

I’ve learned that I need to treat myself with the same kindness I would if I were at goal weight… and I’ve been saving that self-respect and kindness for that mythical “someday” since I was 8 years old and in Weight Watchers. I think 25 years of self-hate is long enough.

Treating myself with kindness means buying clothes that fit me properly. It means an attitude makeover. It means trying to feel pretty by doing things that make me feel pretty, like using scented lotion and not constantly judging myself for whatever it is that I’m eating. It means giving up the dream of a flat stomach or bikini body and just being happy with being able to use my body as MS will allow on any given day.

Calling yourself fat doesn’t make you any skinnier or any happier. Berating yourself for not doing things your body can’t do doesn’t make you more able.

But maybe, just maybe, being less judgmental of myself will make me more happy. We’ll see.