3 Important Things I Want My Child To Do

Earlier today, I read an article that inspired me. A father-to-be wrote out 14 things that he wants his future child(ren) to know… things that he doesn’t embody right now, but that he’ll probably strive to embody as his child grows.

I’m not so arrogant as to say that I feel prepared to be a mother.  I honestly don’t know anyone who isn’t either totally narcissistic or uniformed about the complexities of parenthood that can say they feel totally ready. Hell, I don’t even know if it’s possible to be ready.  But that’s the first thing I want my kid to know.

Try new things, especially if they scare you.

As a kid, this is gonna be easy because everything’s new. You don’t really have a say in the matter. You’re going to be presented with challenges over and over again. It’s part of growing up. But… as you get older, you’ll notice there are some things that you’re great at and other things that make you feel uncomfortable because you aren’t yet proficient. You’ll get comfortable with the idea of who you are and what you can do. That’s when you need to try something out of your comfort zone.themagic

The scary things — the things you see other people doing that make you think, “WOW, they are awesome!” Those are the things I want you to do, especially if you are afraid that you will fail or that people will laugh at you. Neither of those things are a good reason to stop yourself from growing.

When you think about doing those things, part of you will be excited and giddy… but there will also be a tiny, cowardly voice inside you saying, “Are you sure you can do that?” or “They’re so much cooler than you. There’s no way you can do that.” I want you to respond to that voice in a loud and powerful thunder inside. Respond to that voice by saying, “WATCH ME KICK SOME ASS.”  And then do whatever needs to be done. Don’t shy away from the hard work. It’s the most important work you can do.

Embrace the suck.

I’m gonna bet that well before you’re an inevitably foul-mouthed teenager, you will have already heard the following phrases so many times that they seem reasonable to you. I say this, not because your father and I will say them frequently, but because they’re pervasive in pop culture, and real people say and think things like this all the time.

“Life sucks.” … “Work sucks.” … “I suck.” … “The Bears suck.” (Okay, that last one might be true.)

First, I apologize for cussing through your whole childhood. I’d like to pretend that becoming pregnant with you magically improved my vocabulary, but it didn’t.

Secondly, I’m gonna let you in on a secret that most people in our day and age have forgotten: Life is supposed to be hard. It’s a feature, not a bug! Sure, there will be times that are awesome and fun and happy and easy. It is my greatest hope that those times are a much bigger part of your life than the others… but you can’t have the good without the bad.


I know, for a fact, there are going to be moments in your life that just, well, suck. You’re going to face loss. You’re going to face failure. You’re going to have your heart broken. You’ll lose hope. We all do, from time to time.

But, if your dad and I do our jobs well, you’re going to become resilient. You will know that nothing lasts forever – not sadness or happiness. You’re going to understand failure as a step towards success.  You’re going to accept loss as a natural progression that comes from having people and things in your life that you truly value, and you’re going to appreciate people and things while they’re around as best as you can. You’re going to learn that your heart is stronger and bigger than it ever feels like it is at any given moment. You will learn that time heals most pain, and that hope and happiness are things that you choose.


There are gonna be times when you’re building skill at something and you’ll get frustrated and think to yourself, “I suck at this!”  That’s a good thing, really! It means you have good taste, and that you should keep working.


I can’t tell you the number of times I heard classmates at Berklee College of Music say that they sucked at their instruments. It was almost mandatory to believe that you weren’t good enough. Heck, it might as well have been an entry requirement. Truthfully, nobody who attends that school sucks at their instrument. They all are just humble and know how much better they could be. Everybody there was working hard to get better every day. I would go so far as to say at least half the folks at my college were perfectionists, and I don’t think that’s a bad thing.  There are folks out there who say that “perfect” is the enemy of “good”… but really, the enemy of good is quitting.  This is as true for honing your skill in any art form as it is for gaining skill and technique with bodybuilding, gardening, carpentry, or any other pursuit in life.

KMBA-Ira Glass Quote

There are also folks out there who will tell you to follow your dreams. I’m one of them!  But in all the dreamy talk, people often forget that the actual act of doing what you love is still damn hard work. It really doesn’t matter what you choose, honestly. The way you’ll know that you’re on the right path is that you will not hate the hard work or yourself for doing it. Sure, it’ll still suck. Work almost always sucks. That’s why it’s called work and not “fun.”  But if you’re doing the right kind of work, you won’t mind it so much. You’ll think to yourself, “Well, at least I’m doing this and not [insert something you truly hate here].”

One of my friends in college had a gross saying that used to make me laugh pretty hard, but it’s dead on in this regard. He would say, “Being happy is all about deciding the right flavor of shit sandwich to chow down on.”

So, embrace “the suck” in all of its forms. Doing so will make your life so much more enjoyable. Resistance to pain only makes it subsist.

Love Yourself.

For some people, this is one of the hardest lessons they will ever learn in life, if they ever learn it.  The world is full of folks who exist in a state of sadness that comes from years of untreated trauma. They have low self-esteem. They believe they somehow deserved whatever bad treatment they’ve endured. They don’t believe they deserve good things. They don’t feel like they deserve unconditional love. I know this person.  I’ve been this person, and I healed because of your father (and our family)’s unwavering and unconditional love and patience, and a lot of work with several good psychologists. It took years for me to be able to say that I love myself without feeling guilty or like a fraud.  I will do everything in my power to make sure you never have that same challenge.

I want to assure you, right now, that you are unquestionably loveable.  I can say this without hesitation because I already love you like crazy, and you’re not even born yet. Heck, you were created from love. I thought this world needed more of your father in it… and he thought the same thing about me.  If you ever find yourself wondering, “Why did my parents have me?” the answer is very simple. We loved the idea of you before you were part of our world. We wanted to hug you and love you and teach you and watch you grow. We wanted to leave a legacy of goodness and love, and the best way we could think to do that was through you.  And that goes for any siblings you might have later too.

So please, treat yourself with the same compassion you would treat anyone else. Be kind to yourself. If you ever find yourself beating yourself up over anything at all, ask yourself, “What would Mom say to me?” I promise, I’d say something nice. 🙂


Advertisements, magazines, and many TV shows exist to make you believe that you’re not enough exactly the way you are. Companies, in an effort to sell you things, will tell you that you need to be thinner, faster, sexier, richer. Don’t believe any of it. You are the only one of you that has ever existed or will ever exist. Your existence is unique event in the history of the universe.


Right now, you are the size of a sweet potato… and I know there are many more important things that I want to teach you.  Those lessons will have to wait for another day because I desperately need a nap.


Apples & Oranges

Week 15!

week15-2I’m currently very amused by the fact that some websites say our baby is the size of an apple and others say s/he is the size of an orange. There’s something poetic and hilarious about it because it means that you really can compare apples an oranges, at least as far as size is concerned. 🙂

week15 For all interested parties, I am now showing!  Most of my clothes, though, are loose, so unless you felt my belly, you still wouldn’t know.  One of the perks of losing ~20 pounds before conception has been that most of my clothes still fit very comfortably, jeans aside.  I basically am living in my pajama pants and t-shirts. That hasn’t stopped me from falling in love with maternity clothing, however.  I honestly believe that belly panels and shirred sides on shirts are some things that plus-sized women’s fashion has been desperately needing for a long time.

And can I just say how totally bizarre it feels to have all of your organs shifted around and up, and for your lower abdomen to start feeling kind of like an inflated ball?  Because it’s straight-up weird. And it’s occasionally acutely painful.  The best way I can describe it for guys or ladies who haven’t experienced it yet is that sometimes you get cramps that feel sort of like the cramps you get when you are super constipated and really have to make a bowel movement, but slightly higher in your abdomen… and no amount of pooping is going to make anything better, so eating a big handful of prunes, while great for its fiber and nutrients, is ultimately folly.

This week has been much better in the realm of tummy issues, though. Only 1 day where I got sick – otherwise, things are alright!

One thing that has been a bit disturbing to me is that I’ve had a few seizures.  Not like, a ton or anything – heck, it’s nowhere close to what I dealt with prior to pregnancy, but it still freaks me out when it happens.  I got so used to not seizing! I got some tinglies in my feet and back yesterday too, so I’m willing to bet money that I’m fighting off some kind of ickyness. It’s nothing to be worried about, just so you know. My epileptologist told me that as long as I continue breathing through the seizures and am not falling, it’s not likely to harm the baby. Her biggest concern is making sure that me and Hush Puppy have sufficient oxygen at all times.

Pre-Birth (or “Soul”) Contracts


So, one thing that Facebook is really great for is introducing me to concepts that are second-nature to friends of friends but are totally unusual and bizarre to me.  One of these things is the concept of the Pre-Birth Contract.

A quick summary: Before you were born, you and a bunch of spirit guides got together, reviewed your last lives for what was good and bad, and decided a path or “destiny” for yourself to move towards enlightenment — to better understand what life is all about — to better understand how you are a part of God.  This solidifies the idea that there are no coincidences or accidents — this was all part of God’s (and your) plan. The curve ball?  You forget all about the contract you made upon incarnation and have to experience it without the knowledge that you’ve chosen your path for your higher self’s greater good. That’s the only way for you to experience free will and the ability to creatively problem solve.

At first blush, this notion made me angry (It seemed like the cruelest form of victim blaming I’d ever seen.) and then it amused me greatly. My response to my friend’s friend was, “If I planned the life I’ve gone through for my greatest good, I am a serious pain in my own ass.”

I mentioned it to Adam, who is an even bigger fan of table-top roleplaying games than I am, and his immediate response was, “What a neat idea! It’s like cosmic character creation.” He made a joke about how there’s got to be real estate in Heaven, and that we’re all just trying to get to the de-luxe apartment in the sky — that folks with harder lives get better quarters.  Imagining that I’d get better digs because of MS and seizure disorder gave me the giggles.  When I said, “I’m doin’ it all for us,” he was quick to remind me that we’re only married until death, so he’d have his own place.  I asked him a moment later if my eyes were actually shooting laser beams into his face or if I was just imagining it. 🙂

I wondered if Hush Puppy was currently in negotiations, or if that happened before conception.  Then I wondered, with all the things I’ve endured (and continue to endure), what enlightenment my soul was after.

Why NOT me?

whynotmeYesterday, my friend Erika wrote a great blog entry about how she deals with self-pity in regard to having MS. Her tactic is not to say, “Why me?” but rather “Why not me?”  She reminded us all that everybody’s got their burdens to bear, and that it’s better to do so without unnecessary sadness over the hand you’ve been dealt — but then she said something that I’ve seen many, many folks with MS say.  She said, “I want my ‘old’ life back.”

For whatever reason, when I read that, it made me think about those Pre-Birth Contracts. It made me wonder, “What am I trying to learn?” I can’t count the number of times over the last 7 years that I’ve wished that I never developed MS… the number of times I thought about how much better life would be if I were still able to drive… to be a full-time attorney and to still perform musically without fear of experiencing seizures on stage… the number of times I have shamed myself for not being an equal financial contributor to our household… the number of times that I worried about being a burden to the people I love, or worried about frightening children with my seizures… the number of times I’ve had to fight suicidal ideation.

It got me thinking: what good has come out of dealing with MS and seizures?  And the answer was, “Quite a lot.”

The Upside of Down

findthegoodHaving MS and seizures has caused me to learn many lessons that I would not have otherwise have learned.

  • It’s absolutely forced me to learn the importance of regular meditation and/or prayer for physical and mental health.
  • It has highlighted the need for self-compassion and made me learn how to practice it.
  • It’s made me question the way that I think about everything – and to constantly examine those thoughts for truth and rationality.
  • It’s made me wildly change my expectations of myself and others.
  • It’s made me face some of my biggest fears (like spending huge amounts of time alone or being locked up in a mental hospital against my will) and to learn how, not only to cope, but to thrive in situations that prior to seizures, I would have avoided at any cost.
  • It’s required me to face demons of past abuse and to do the hard work to move as far past those memories as possible by both growing as a person and learning to forgive the people who caused me harm to begin with.
  • It’s made me take a long, hard look at what I thought was important and to reassess my priorities.
  • It’s made me redefine what love means, and to see how vital it is to not only feel gratitude, but to express it loudly and regularly.
  • It’s made me a more kind, empathetic, compassionate person to others.
  • It’s made me much, much more patient. (Which isn’t saying much, since, emotionally, I’m still wildly impatient – especially with myself. Still, 2014 Rae is way more patient than 2006 Rae.)
  • It’s made me redefine what it means to be a good friend, and to more fully appreciate the people who are willing to be on this ride with me.
  • It’s made me painfully aware of mortality, of the importance of never taking any aspect of your body or health for granted, and of the fact that doctors are just people who are doing their best to help people with the knowledge that they currently possess.
  • It’s helped me to recognize what’s really important versus what society and advertisers suggest are the things we should be focused on.

If it weren’t for my disability, I wouldn’t have the privilege of staying at home with my future children. I wouldn’t know, deep down, that the most important work I will do in my life will be to raise kind, emotionally intelligent, community-minded, curious kids. I would be trapped in the Quest for More Stuff and More Power.

I wouldn’t know the joy of the double-nap day or the freedom that comes with being able to say, “The dishes and laundry will be there tomorrow.”  I wouldn’t be able to laugh about people who are genuinely fretting over fashion or other “first world problems.”

Does that mean that I’m grateful for my challenges?  OF COURSE NOT. That would be silly. Challenges suck! Nobody’s genuinely grateful for disability.  But I am genuinely grateful that there’s gold to mine from the rubble. I am genuinely grateful for growth that wouldn’t have otherwise occurred.

When I think about my “old” life and my current existence, it really feels like looking at two very different people… sort of like comparing apples and oranges. 🙂

But either way, the fruit is sweet. Life is good.

Everyday Earbug

And just because life is amusing in its serendipity, while I was writing this, I found out that one of my favorite bands (Marina and the Diamonds) has released a new single.  The name? “Froot.”  I couldn’t make this up if I wanted to. 🙂 Hope you enjoy.

Happy Friday!

Exercising My Right To Abstain.


Today’s the mid-term election in America. Damn near every post on my Facebook feed is the same digital sticker saying “I voted.” that is otherwise completely devoid of content. For everyone who is proud of themselves for participating, I say, “Good for you!”  I, for one, will be abstaining.

Why?  Because of 3 reasons:

The first is logistical: I can’t get to the polling place.  When we moved to the Chicagoland area, we moved in to my brother-in-law’s house in Romeoville (a town that’s an hour away from where we live now). That’s where my ID says I still live, and hence is where I’m registered to vote.  Yes. I know that I need to get that ID updated. Adam and I have delayed that process because we thought we were going to be getting a house somewhere, and that it would be a lot of unnecessary waiting in line and filling out of paperwork. We expected to live in this apartment for maybe a year.  It’s been almost 3 now. So, we will be remedying that soon. Strictly logistically speaking, thanks to my seizure disorder, I lack the ability to drive way the fuck out there while Adam is at work. So, there’s no way for me to voice my opinion, if I even had one.

The second is practical.  I am not remotely invested in this community, and I am not educated on any of the races. Other than not wanting Bruce Rauner to be governor because his family gave $700,000 to the lobbying groups behind the terribly flawed SCOTUS Hobby Lobby decision, I have absolutely no opinion whatsoever on anything that’s being voted on.

Honestly, I am just starting to accept that Chicago is going to be my permanent home, and that I don’t have any say in the matter. I absolutely hated this city before being forced to make the best of being here.   I wanted to live in Los Angeles.  I still do, but I know it will never happen again. I did all the hard work necessary to get out there… but disability completely stripped me of my autonomy. I couldn’t support myself anymore, and when Adam couldn’t get a job there for over 2 years, we had to choose between going to a homeless shelter or moving in with family. Not a tough choice, especially considering that Adam had a job here within a week of our arrival — but it has been a long, difficult adjustment for me.  These days, I look hard to see what’s good about Chicago… (and there’s a lot!) but I still don’t feel like a Chicagoan. I don’t know if I ever will. I feel like the people who live here and love this place should have a louder voice than me when it comes to their local politics.

The third reason is intellectual honesty. I factually know that my vote wouldn’t matter anyway. I would only be playing my part in a nation-wide charade. We are no longer living in a representative democracy. We are living in a society where the only people who make it to the ballot are there because they have the financial support of oligarchs. We are living in a society where votes are lost all the time by malfunctioning hardware, where the Republican party actively works to stop poor people from voting and miraculously has the SCOTUS’s aid in doing so, where the only real votes we have are with our dollars.  You know, because money is speech now. Voting gives us the ability to PRETEND that we have any say in what goes on here. It gives us the ability to PRETEND that we’re not succumbing to neo-feudalism. This pageant gets played out because people buy in to partisan marketing messages and can’t be convinced of truth afterward.  I have had to accept that very, very rich people are the only ones whose voices will actually be heard by our government, and that those people, by and large lack empathy and are out of touch with the needs of the common person.

Personally, I don’t like participating in a farce, even if it’s the “American” thing to do.

Chasing the American Dream

Remember how I said we had a contract on a house? (This would be the 7th house we bid on in the last 6 months…)  Well, we don’t anymore. We had a housing inspector out on Saturday and found out that the property we were slated to buy had all sorts of interesting problems.

Electrical issues! There was no electricity to the kitchen, wiring to the main breaker using wires that aren’t even available in this country, and all of the electricity to the garage was not grounded, and was therefore a fire hazard. Also, the connection to the city’s power was not up to code, and there were wires just randomly sticking out of the ground that could hurt people!

Plumbing issues! All of the spigots on the outside of the house were leaky. None of the showers or tubs drain properly. The sump pumps were both homemade, rigged incorrectly, and non-functional. The whirlpool tub was non-functional. The hot water heater needed to be replaced.

Safety issues!  The door to the basement opened over the stairs. The outside stairs, both in the front and back were irregular in size and could cause people to fall. There were cracks in the foundation.

For these reasons and more, we decided to step away from the property.  At this point, I’m completely over the idea of owning a house. Other than wanting to be closer to family and friends, I don’t see a benefit. Our 2 bed/2 bath apartment has good access to public transportation and damn near everything you could want in walking distance, for a good price.  If Adam finds a place he wants me to check out, I’ll give it a look, but I’m absolutely done spending time on Zillow and RedFin for the time being.

Pregnancy Update

It’s been over a week now since I last worshiped at the porcelain altar! Morning sickness has been replaced with extreme crankiness and bacne.

Tomorrow, we enter week 14. The traditional “size” this week is “lemon.”  I much preferred this graphic, however.

Our next OB appointment isn’t for another 2 weeks, so there really isn’t much to report. Things are just rockin’ along.  I have, however, come to a very important conclusion – and that is that I don’t need to participate in The Bump’s May 2015 mommy board anymore.

Why I left TheBump: Somebody asked about whether or not it’s ok to host your own baby shower, and she got mercilessly flamed. She was told, “If no one throws one for you, you don’t get one.” I jumped in to say that I vehemently disagree, and that Emily Post and Dear Abby’s opinions should never mean more than your personal experience and your genuine relationships with the people in your life. I said that folks are going to be giving their unkind, unwanted opinions regarding motherhood for the rest of time, so she should start getting in good practice on telling people where they can shove those unwanted opinions, and that she should do whatever makes her happy. At that point, I became the target for the catty, hormonal bitches, and decided that if I actually stood by my opinion, the correct next move was to completely ignore theirs.

I have found it interesting, however, that when I’m super cranky, I have an unreasonable desire to click back on that thread and see the mean things that these women have said and get upset and fight.  Resisting that urge has been a big deal for me.

3 Great Things About Yesterday

  1. Started a new 21-day meditation challenge by Oprah & Deepak Chopra. I always enjoy those.
  2. I was taking the bus home from my chiropractor appointment, and on the second leg of it, when I tapped my Ventra card, it said “insufficient funds.” I started to look for the money, and a total stranger offered her card. She said, “Happened to me just last week, and somebody took care of me. I’m just payin it forward.”
  3. Was an effective housewife – got dinner on the table, did the shopping, did the laundry.


Daily Cute

Everyday Earbug

And now, it’s time for me to go do all the things! You know, things like actually eating breakfast… 🙂

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.

Real Estate Law Is Borked.

Didn’t get the house. Someone came in with a cash offer after us, and so the bank went with them.

I have to be very honest: as someone who studied contracts in multiple classes in law school (heck, almost all of my elective classes were contracts-based), I thought I had a reasonable understanding of the way contract law works. I don’t understand real estate contracts even a little.

I mean, let’s take this house buying experience as an example. A bank lists a house for sale for $150K and advertises it on Zillow, RedFin, and other websites. If you did that with a piece of personal property or with services that you would perform, that would very clearly constitute an offer. But in the wild world of real estate it’s not considered an offer. I honestly don’t know what it’s considered.

In real estate contracts, the purchaser makes an offer to the seller to buy a house that’s been advertised. This puts all the power in the seller’s hands and allows them to pit bidders against one another so they can come out with the best offer for them. Oftentimes, because purchasers are expecting that haggling is a necessary part of the process, they low-ball their first offer.

Can you imagine if this was the way commerce worked for regular goods?


Upping my game.

Only In Dreams

The other night, I had a crazy dream. Because of MS, I peed my pants in public, so I just took off my jeans, socks, and shoes and kept walking — rocking teal sequin-covered pee-stained panties with bare feet and an internet-meme t-shirt… which somehow lead to meeting Lady Gaga, who said she loved my style.

In this dream, she, apparently, was good friends with my friend Mike, who had vouched for my awesomeness via quick video cell phone chat. We got into a deep, philosophical discussion over dinner, and she said to me, “If you don’t do something fun, just to please yourself, everyday, you’re doing life wrong. I don’t stay friends with people who can’t have a good time.”

I woke up the next morning feeling very inspired, and I decided that it’s time to change my current way of being and live the sort of life that I would hope for my future children to live. My goal is to become a good example of how to be a happy adult to kids who don’t even exist yet, in the hopes that when they do manifest, I’ll already be a good role model for them.

This means less time spent on FB, more time spent reading quality books, writing both in this blog and for my novel, and creating art – whether it’s making jewelry, cooking, or creating clothes. It means the return of the daily “to-do” list and yoga. It means exploring Chicago in my free time instead of staying in my apartment all the time. It means conquering my fear of using the sewing machine when I’m alone, and cutting the excuses for not practicing guitar.

It means getting back to coding and learning the newest language updates to what I already know. HTML is now HTML5, CSS is now an all-the-time thing. I don’t even know if javascript is used anymore. I need to finish learning PHP, MYSQL, and I want to find out what it takes to create apps for Andriod and iPhones.

Basically, I want to be the independent, web-slinging, hard rocking, well-read woman I used to be… and I want to have fun doing it.

Easier Said Than Done

Of course, as soon as I had this revelation, my body decided that it was time to fuck with me. Maybe it was to see if the revelation wasn’t just passing fancy. Who knows. I had one good day, and then the next one was so bad that I couldn’t even get out of bed. I literally slept all day long (20 hours total!) and only ate dinner that night because Adam ordered pho for me. I was even having a hard time drinking.

I’ve had 3 weird episodes where my body gets super hot, and I start sweating profusely – like through clothes and bed sheets, it’s that much. I’m going through one right now. It’s 70 degrees in my apartment (that’s 21 for all you fans of celcius), and I want to rip off my skin, I’m so hot.

It feels, physically, just like having a panic attack, but I’ve got absolutely nothing to be stressing about. I’m not pregnant yet. We still haven’t found the house that’s right for us – so we’re not in the moving process. I’m just struggling to be a version of myself that I am happy with and get out of this rut of being a Facebook addict with no ambition, career, or hobbies.

I don’t know whether the sweating and heat is hormonal or caused by MS, so I made an appointment with my gynecologist next Tuesday to figure things out.

In the meantime, I’m just trying to wrap my head around the whole situation and be reasonable. I can’t expect myself to go out and explore Chicago when I’ve been having seizures for 2 days straight. I can’t learn code when I’m falling asleep. The only things I think I can do is to put time limits on FB, focus on being an effective housewife, and instead of yoga, do pilates, because it’s almost all floor-based work. Obviously, I’m also doing more writing.

All I Need Is Just A Little Patience

I know that change doesn’t happen all at once. I know that I need to be patient with myself while I transition into a better way of being. But anyone who knows me well knows that patience is, without a doubt, my worst quality.

Even though I’ve become far more patient over the last 7 years thanks to MS, I still want everything, all at once, changed to fit my ideal when I make up my mind about something. But that’s magical thinking and not how human behavior or thought patterns work. It takes steps and tons of conscious decisions to get out of a rut this deep.

It also takes a commitment to treating yourself compassionately. And, as usual, I’m down on the job there. I’m already salty with myself for not having eaten breakfast this morning or having attempted morning yoga. I keep bullying myself, as though hearing “GET WITH THE PROGRAM” is going to actually motivate me, make anything better, or make the change happen any more quickly.

What’s worse is that now that I’ve decided how I want to live my life, looking at how I have been living my life for the last 4 years or so causes me sadness and shame. To put it bluntly, in many ways, I gave up on life. I let the seizures win and became a shut-in. I didn’t even allow myself to imagine that I could do more. I mean, I still went to the gym 3-4 times a week in the hopes of improving my physical condition, but I haven’t had any lasting positive change to show for it other than now having a positive emotional response to the idea of going to the gym. At least that’s something.

The truth of the matter is that growth is difficult and painful even when it’s positive and totally desired. So, I’ll struggle in the muck today. Hopefully I’ll have an easier time struggling in the muck tomorrow, and eventually I won’t be in the muck at all.

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.

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.

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?!?!?

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.