Stardust

So, David Bowie died yesterday… and today we all found out about it. It sucks.  He sparkled — sometimes literally.  Hell, the work he left us to enjoy for the rest of time still sparkles.

It was 4 p.m. before I checked Facebook today, and the first thing that I learned was that David Bowie not only had passed away at the age of 69 (which, let’s be fair, is the age that I think he would have wanted by his name for all time – based entirely on how cheeky it is), but he had managed to release an album saying goodbye to his fans that he put together while battling terminal cancer. He even made one specific music video as a “finale.” Check it out.

If that doesn’t say, “Keep creating art, no matter what,” nothing does.

That’s why I’m writing right now, even though I know I’m not at my best.  These words, and whatever I manage to scratch down on paper or record to video or sound, will one day be all that is left of me for everyone else. All that will be left for Henry.

You don’t have to be terribly creative to leave important parts of yourself behind for others. My Poppy put together several scrapbooks, for example. They’re filled with comics and poetry and articles that meant something to him. I’m lucky enough to have 3. And when I miss him, the contents of those scrapbooks feel like a conversation that I get to have with him through space and time. They, in many ways, remind me of Facebook, and that similarity makes me hope that when I’m gone, Henry will be able to look through the thousands of posts on my timeline when he is missing me and feel like I’m still here for him.

They also make me wish that my other grandparents had kept journals or scrapbooks. And they make me hope that my parents might have the foresight and the time to do so as well.

Today, I had so many time-travel seizures that I honestly don’t remember the day, aside from Adam letting me know that I’d found out about Bowie’s death at least 9 times. Personally, that’s 9 times too many. But, hey, if I’ve got to be shocked and saddened at someone’s demise, at least it’s an artist whose work I have enjoyed since I was a small child.

He didn’t let cancer stop him from being the artist that he was — from giving all of us fans more music and poetry to enjoy for the rest of our lives… so, I’m not going to let MS and seizure disorder stop me from creating either — even if what I’m creating seems completely mundane to me at the time. I have to remember: it’s not mental masturbation; it’s not just for me; and no one else has my point of view. It’s exactly as true for you.

sparkle2

because

stardust

 

 

Sending a Letter Through Time

Henry says, "What are you lookin at?"

Henry says, “What are you lookin at?”

It’s been a good day.  Challenging, but good.

It’s a Tuesday, which means that Adam’s at work, and this is only the second day that I’ve had to take care of Henry and myself without any help.

The morning started out rough.  Yesterday, we ran out of disposable diapers, so we started using cloth diapers from the stash that I’d put together before Henry’s birth. Fortunately, he’s now over 8 pounds, so they fit him. (If cloth diapers had the yellow-turns-blue-so-you-know-he-peed technology, that would rock my world.  Scientists, get on that, won’t you?)

Anyway – the change from velcro-like closures on the disposables to the snaps on a reuseable Best Bottom shell got the better of me this morning in a suuuuper annoying kind of way.  You know that scene in all the baby movies where one of the parents gets peed on, and the baby pees on everything around it too, in an impressive and comedic fashion where you think to yourself, “Wow, kid got a lot of height with that whiz!”  Well, that was how I started my day — but it’s not where I am now.

Somehow, today, I managed to keep the kid fed and mostly clean (He needs a bath, thanks to spit-up, but we’re waiting for Daddy for that one!), to eat breakfast and lunch (Ok, so breakfast was just a Fiber One Protein Bar and a few swigs of RC Cola, but it’s better than nothing!), pump 3.5 oz of breast milk, do 2 loads of laundry, and take the kiddo with me to the grocery store and pharmacy down the street.

I know to a regular SAHM, this is probably not such a big deal — but I’m not a regular SAHM. Today’s the first day that I’ve managed to find time to put clothes on instead of pajamas, and is the first day in 3 weeks that I haven’t had any seizures at all.  Even on a good day, prior to giving birth, I would have been proud of myself for this level of activity. Adding in diapers, bottles, and pumping for breast milk, and I feel like I need some sort of gold star on a chart somewhere… which I guess is what this blog entry really is. I’m proud of myself, my kid is napping, and I get the chance to tell the world how far I’ve come.

If I could send letters back in time, I’d write this today.

Dear early 2011 Rae (the one having so many seizures per day that she has to use a chair to shower, isn’t allowed to cook, is bankrupt and suicidal),

You know how you are worried that you have no good reason to live, and that you are nothing but a burden to your family and society? Well, in 4 years, you’re the woman walking to and from the local (non-chain) grocery store and Walgreens with a 6 week old baby that strangers can’t stop cooing over, to shop for fixings for dinner and baby supplies…and you haven’t had a single seizure today.

Thanks for not killing me! There is more to look forward to than you can allow yourself to imagine.

-2015 Rae

I doubt she’d believe it was real. I’m a cynic — always have been — and depression/suicide is a crafty demon that doesn’t let anything positive in… but if I could show up in a TARDIS and give her a pep talk, I sure as shit would do it.  I hope that sometime in the future, if I need a pep talk, I remember to look back here and see how far I’ve come, and remember that things are never really as bad as they seem.

Look what I had to look forward to!

Look what I had to look forward to!

That being said, it would be totally bitchin’ if 2019 Rae could send me a letter or show up and let me know that we’re gonna make it through this infant stage without me losing my mind or ending up in the hospital because of sleep deprivation and stress. *looks around, expectantly* Well, I guess that’s not happening, so I’m gonna have to just keep doing my best every day, and remember to do my future self as many favors as possible. 🙂

Speaking of — that means getting off my butt, putting a freshly-laundered mattress pad & sheet back on the pack n play, washing all the bottles that have collected around the apartment, putting up another load of laundry, and straightening up a little bit. Heck, I might even go for extra credit and spritz on a little bit of pretty stink.  Adam’s on his way home!

Wooooooahh! We’re halfway there! Woooaaaahh! Livin on a prayer!

21 Weeks!

Officially, we’ve hit the halfway mark on this pregnancy.  Sure, full term is 39 weeks, but it can also go as far as 42 weeks, so I’m calling this halfway.

Wanna see the newest pic of our little wiggleworm?  Here you go! 🙂

3d

I love this picture because he already has so much character. He’s sucking his thumb, and has his other arm stretched out behind his head, just chillin’.  I really hope this is a portent of things to come.

Yes, I know that his hand kind of looks like a foot, but I trust the tech when she says that it’s his hand. She took pictures of his feet too. 5 fingers and 5 toes on each limb! His heart and kidneys look good too. I’m so excited that he’s developing well.

Oh yeah, and there’s also this other little thing I haven’t announced… we know he’s a boy! 🙂  I would post the ultrasound picture that confirmed that, but I don’t want to be the mom who posts pictures of her son’s genitalia on the internet before he gets the chance to make that mistake himself.

The “fruit of the week” to show baby size is either a pomegranate or a banana. I find this perplexing, as the two are very different shapes. At least they agree that the average size is 10.5 inches and 12.7 oz.

I found some weekly questions that I thought might be cool to share with everyone.

Total weight gain/loss: None! Not since conception. Doc’s not worried about it, so neither am I.

Maternity clothes? Um, YES. Belly panels are the best. I might not ever go back. I mean, it’s like having built-in SPANX that make your clothes more comfortable. Why don’t all plus-size pants have these?

Stretch marks? Not yet!

Best moment this week: A tie between turning 34 and Adam surprising me with a Snoogle!

Miss anything? DEAR LORD, YES. I was really sick this past week, and I have really missed decongestants.  I also missed wine at Christmas dinner.

Movement: Loads! He seems to like to wiggle the most when I lay down to go to bed or when I wake up first thing in the morning.

Food cravings: pickles

Anything making you queasy or sick: Not really, but I’m still afraid to try turkey again. It made me so violently ill during my first trimester.

Have you started to show yet: Yes and no. Adam can definitely tell, but other folks might not be able to see it. If I’m naked, you can totally see the roundness of my lower belly, and how much my waist has changed — but with clothes, I just look like I did before I lost weight in order to conceive. The plus side of that is not having any new stretch marks, and still fitting in all my t-shirts.

Labor Signs: Had my first Braxton-Hicks contraction on Christmas day. MAN-OH-MAN do they suck.

Belly Button in or out? In

Wedding rings on or off? Off my hand, but on a necklace.

Happy or Moody most of the time: Mostly happy, with scattered showers of irrational, silly crying over things like cartoons or adorable baby clothes.

Looking forward to: having a big, round pregnancy belly

My Most Recent Adventure With Time Travel

Earlier this week, I had my first time travel seizure in months.  I guess I was due for it, since I’d been really sick for about a week.  Sure, MS goes into remission when you’re in your second and third trimesters, but, sadly, that doesn’t preclude pseudoexacerbations.

I thought it was February of 2013 and couldn’t figure out what was wrong with my tummy, and why it was hurting. I thought I was having some kind of awful gas. (Of course, I was feeling the baby moving around!) Adam asked, in response to my question about what was wrong with my belly, “What’s our goal for this year?” and I said, “To not want to kill myself?” at which point he realized that he was thinking of 2014…and that I was further behind.

The follow up was him showing me ultrasound pictures and me crying and asking him how on earth I’m going to be a good mom if I can’t stop thinking about suicide. He assured me that I’ve gotten much, much better. After the confusion lifted, I was very relieved to have done all the hard work in therapy and continued with good daily mental health habits.

Amusingly enough, I’m halfway through this pregnancy and am actually smaller in size than I was in 2/2013. I was amazed that I could have life inside of me and be “so much smaller.” I was my heaviest then, weighing in at 30 pounds heavier than I am now.

All the things!

As the big day ekes ever closer, I find myself starting to think about things that previously fell under the heading of “Eh, we’ll worry about it closer to time.”  Things like finding a pediatrician (?!?), making a short list of doulas to interview, budgeting for all of the things, making a baby registry (God bless you, Amazon, for having a universal registry.), planning for a nursery, and creating a guest list for the baby shower.

Baby Shower Guest List
Honestly, I don’t even know how to go about putting together a guest list for the baby shower. Most of my friends and family are scattered all around the country. Is a virtual baby shower a thing? Can I Skype/Google Hangouts/Live Stream the shower? What’s the etiquette on that? But more over, does the etiquette even matter, so long as I’m genuine in who I want to include and grateful for whatever gift they give – whether it’s their presence or their presents? I mean this is me we’re talking about. I’m not exactly known for following convention, and I want to include as many people that I love as possible because celebrations like this are rare and awesome. I just also don’t want people thinking that they’re only invited because I want stuff. That’s not the case at all. Then again, anyone I want to invite probably knows me better than that anyway.

Cord Blood Banking
I’ve also started reading up on things like, “what to pack in your hospital bags for you and baby” and whether or not I want to blow ~$3000 on cord blood banking. I mean, as someone with MS, I definitely see the benefit of having my kid’s stem cells available to him. On the other hand, tons of people opt to donate their kid’s cord blood, making it available to people who need it. It’s a much less expensive option, and seems to me like it would be a mitzvah. There’s no telling whether my baby will ever need his extra stem cells, so spending a bunch of money to hoard them for him seems like it might not be the best use of our money.

Then again, there’s a part of me that wonders if I could use those cells, since stem cell therapy has been proving very helpful in the fight against MS. That part of me feels, oddly, like I’m somehow being selfish even thinking that it might be an option. But then again, I’ve grown those cells. That umbilical cord is as much mine as it is his. *shrug* I can’t even begin to understand myself on this topic. I’m hoping my husband and parents will have some helpful thoughts.

The Great House Hunt
And then there’s the whole “finding a house” thing.  Adam is still hopeful that we’ll find the right house for us before the baby is born. I am much, much less hopeful. In fact, I would say that I’m sort of against the idea of moving at this point. My parents are going to be in town for the first month that the kid’s around and they’ll be staying less than 20 minutes from where we are currently residing. The idea of moving is just too stressful and complicated for me right now.  Right now, I just want to figure out how to keep this apartment clean on a regular basis and somehow fit all the baby things in here.  My best guess is that we’re going to need to either get a storage unit for all the already-packed boxes we have, or unpack and sell a ton of stuff that we clearly don’t need (since it’s been sitting in boxes for months).

Clean, Clean, Clean
The need to nest is real. Every day, I wake up and think about all the cleaning and organizing I want to do and then am thwarted by my body’s limitations. At least I’m regularly getting the dishes put away and the laundry done, folded, and mostly put away. It’s becoming increasingly frustrating to bend over and pick stuff up. I am sure it’ll only get worse as the baby gets bigger. Maybe there are some ab exercises I can do to make that better.

Too Hot For My Own Good.
Also, I’m surprised that TV and movies don’t make more fun of how disgustingly sweaty you get during pregnancy. I swear that it’s comical. I’m deeply in love with the Kool Max® Deluxe Cooling Neck Tie that I was gifted by Polar Products. It’s currently 70 degrees in my apartment, I’m in barely any clothes, and I’ve got it on because I can’t stop sweating. Adam, on the other hand, is enjoying his sweatshirt.

Usually, I try to find some kind of witty way to end a blog post, but I’ll be honest with you: today, I’ve got nothin.  Hope you and yours are doing well and that you had happy holidays and are headed for a very happy new year!

happy2015

Mostly Better

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

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

Doing The Right Thing

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

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

A Mediocre Life? There’s No Such Thing.

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

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

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

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

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

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

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

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

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

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

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

Shake It Off

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

Life and things.

It seems like every time I start to do daily updates, something happens that knocks me off my game within a week. Don’t worry — no promises this time about being “better” or any of that garbage. I’m just gonna keep writing when it feels right and I have time. I figure y’all will appreciate quality over quantity.

The Great Housing Hunt of 2014 Continues.

nohouseSo, first thing to update you on – the house. We got to experience deja vu! A bidder came in with a cash offer, and we lost the property again. Adam and I actually have a bet going as to whether or not this bidder will pull out just like the last one did when they realize that the property has 2 PINs and thus has double the taxes they were expecting to pay. We figure we’ll just keep looking. If it comes back up, cool. If not, whatever.

In the meantime, I’m just enjoying our apartment and am doing my best to take advantage of its perks, like proximity to certain friends, easy bus access to get pretty much wherever I want to go, and having a Walgreens and 2 good grocery stores close enough that we can get to them with fewer than 5 minutes of walking.

Shaken, not Stirred

Every time I see "seize the day," all I think about is crossing out the word "the" and replacing it with the word "all."

Every time I see “seize the day,” all I think is about crossing out the word “the” and replacing it with the word “all.”

As for my health, things are super annoying right now. I miss being on birth control and having my hormones balanced by them. I’m having a ton more seizures than I used to, but it’s not an every day thing… just most days. And truthfully, it’s not something that lasts the whole day either. I’m just back to having to really question my ok-ness before I do things.

Fortunately, despite having seizures in the morning, I was able to visit with friends on Saturday night who had just had their second child earlier in the week. I didn’t want to go over to their house if I was seizing because I wanted the opportunity to actually hold their son and not have everyone worry. That’s actually why we waited until Saturday instead of visiting them on Friday night.

There’s a sort of inexplicable joy that comes from the knowledge that I can hold a kid without them being in danger. Truthfully, one of my bigger fears about becoming a mother has been whether or not my kids will be safe with me. I’m incredibly glad that I’ve learned when I need to put on a cold pack or lie down. It’s an important bit of knowledge to have.

She’s c-cold as ice.

cool58vestSpeaking of cold packs, I’ve finally made a decision as to what cooling vest I’m gonna buy. I’m ordering the Cool58 Secrets Vest. I decided on it because it’s supposed to keep you cool for 2-3 hours and the cold packs it uses don’t require a freezer to reactivate. This means, if I’m out for more than 3 hours and need to get them cold again, I can put them in cold water and they’ll be good to go again. I also was happy to see that you can purchase the Cool58 packs without a vest, which means if I end up wanting to create a different vest design later, I can still use the same cold packs.

And now, for a bit of the Awesome.

awesome5
3 Great Things About Yesterday

  1. Tried a Rainbow Cone for the first time.
  2. Got the first Dirk Gently book. Life is always better with a little Douglas Adams in it.
  3. Enjoyed the 3rd to last new TrueBlood episode ever.

Daily Cute

Can any species defy the affection of a baby kitten? I don’t think so.

Everyday Earbug
Today’s video makes me smile on a personal level, not just because it makes me want to shake my booty, but because they have a sorority in it called “Electro Phi Beta.” For those of you not in-the-know, when I was in college, I founded the Beta Zeta chapter of Phi Beta Fraternity at Berklee College of Music. I’m not sure if the chapter is still active. Sadly, I don’t think it is, but it tickles me to think of all the amazing women I’ve met through Phi Beta who fit this song. I also am amused by the idea of using a lightning bolt as a Greek letter.

happymonday

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.

Thoughts…

About being an inspiration…

It’s been a weird and difficult few days. I’ve just been acting normally, but for some unknown reason, I’ve been told by 4 separate friends in separate conversations in the last 2 days that I’m “an inspiration” to them. They usually follow that up by saying that most people are so fake on Facebook, and that it’s refreshing that I’m so real, showing people what it’s really like to deal with MS…

On the one hand, if reading about my struggles makes them feel empowered to do more with their lives and to be appreciative of their health, I think that’s a good thing.

On the other hand, when you’ve been having an MS relapse complete with complex seizures that you’re handling alone while your husband is working 13-14 hour days, the words, “You’re an inspiration,” sound a lot like “I feel so intensely sorry for you that I can’t contain it, but I don’t want to make you feel worse.”

I remember, as a kid, actively wanting to be an inspiration to others. I always thought that it would occur because I’d done something noteworthy or genuinely helpful to humanity. I made sure to do all my homework. I practiced my instruments. I spent hours of my life writing up business plans for enterprises that never saw the light of day.

I never considered the possibility that simply maintaining a constructive attitude while continuing to exist with a disease that is often painful, lonely, and depressing would be how I made a positive difference in the world.

When I think about people thinking about me with that level of pity, it hurts… and yet, I remember the “hero” paper that I wrote about my grandma Gilda when I was in 12th grade. I didn’t pity her. I thought she was incredibly strong.

Grandma died the summer before my senior year. It was probably 3 months before I wrote that paper for AP English, but I thought about her every day. She had leukemia for 12 years, despite the fact that when she was diagnosed, they gave her 6 months. To put it in a way that will help you understand my point of view of her life, Grandma had been living with leukemia since I was 4. For all intents and purposes, I didn’t know her without it.

I didn’t find out about her illness until I was 8 or 9, and I found out accidentally. My mom was talking with her on the phone, and I overheard. She was not happy that I knew. Grandma didn’t tell anyone about her disease because she didn’t want anyone to treat her any differently. But anyone who has lived with an autoimmune disease can tell you — you need people to treat you differently for your own good. They don’t need to be coming over while they’re sick to visit you. They need to have more patience with you. They need to understand that sometimes hugs can hurt, and that it doesn’t mean you love them any less.

There are times when I wonder what Grandma would think about my blog or my raw, honest Facebook updates. I think she would be glad that I was reaching out for the support that I need, but I don’t think she’d want me to feel like I was only an inspiration because I am doing my best in spite of bad health.

The only thing I know for sure is that she always wanted me to feel safe and loved and happy. That’s what I wrote about in my paper… how even though she struggled with autoimmune disease, she still tried to do everything as if she were fine. She danced with Grandpa in the kitchen. She made good food. She was constantly making craft projects. She played with me, my brother, and our cousins, even after chemo. She didn’t let leukemia make her any less of a person. And I worry that I’ve let the seizure disorder rob me of some of my dignity and some of my self.

About being boring.

One of the things that’s very difficult for me to cope with is feeling boring. I can’t drive anywhere, so if I’m going somewhere, I have to take public transportation… but that costs money, and if I’ve had seizures within a week of the time I’m thinking about going somewhere, I get afraid that I’m going to get lost. The combination of my frugality and fear means that I usually don’t go anywhere if I don’t already have a purpose in mind.

To put things in context for you, since I was diagnosed with seizure disorder in 2008, I’ve left the house by myself and taken a bus somewhere exactly 3 times. Once, when we were living in Romeoville, I took a special shuttle to the mall for 3 of the longest, loneliest hours of my life. Since moving to Chicago proper, I’ve gone to an ophthalmologist appointment that Adam couldn’t get off work to take me to, and to the mall that’s 20 minutes from my apartment. I enjoyed the time at the coffee shop that came with that trip.

When I was younger, I did so much different stuff that my parents actually sat me down and made me drop several extra-curricular activities because they were worried I was going to have a nervous breakdown. Band, choir, BBYO, teaching Sunday school, Memphis Youth Symphony, confirmation classes, and that’s just what I can remember off the top of my head. I also was almost constantly online… but back then it was before the WWW. I would chat online with teenagers in my town for hours at a time. I didn’t care that it blocked the phone line.

In college, I started and ran a chapter of Phi Beta Fraternity. When I was in law school, I was part of the student bar association. I did community service projects. I spent endless hours reading case law and writing papers. And in my spare time, I went hiking with amazing people and tried my hand with performance art.

But since I’ve become disabled, I don’t feel like I do much at all. I foster kittens. I try to keep up with all of my FB friends and be supportive. I grocery shop and cook. I do laundry. But I’m not satisfied.

I know there’s more to life than this. I just feel like it’s just outside of my grasp.

Practicing guitar, piano, percussion, or voice seems agonizingly pointless, since there’s no one to play with… but I consistently want to do it until my inner monologue talks me out of it. I’m giving myself points for wanting to want to practice. It means I care enough to be uncomfortable with my lack of motion.

The thing that’s tough about it is that music has always been something that was both challenging and joyful. It meant sharing the experience with other people. It mattered that I practice because my individual performance affected the group’s performance as a whole. Now, it just feels like a way to remind myself about how isolated I am and how much my chops have slipped. I’ve done the Craigslist thing and have abandoned the idea of being the singer of a band. I mean, who wants to watch an overweight unknown 30-something woman trying to belt out rock n roll? I wouldn’t go to that show. I missed my opportunity there.

The only thing I can think that’s positive is in regard to learning guitar, because I’m hoping that eventually, I’ll songwrite for my kids. Having already mastered technique necessary to self-accompany will bring joy to my kids, in theory.

But what makes people interesting? It’s the things they do. And I’m not doing much besides housework, FB, and pinning things to the Paleo Compendium.

I think I need to find a good volunteer opportunity other than just fostering kittens. I need to get out of the house. I need to meet kind people. I want to help, and I know that one of the best ways to show gratitude for the good things in your life is to help folks who are in need. I guess I’ll hit up Volunteer Match.

About being realistic.

Of course, I wouldn’t be me if I didn’t try to take a step back and figure out why I’m such an emotional monster today.

First, I still have steroids in my bloodstream. A medrol dose pack stays active in your system for about a week after you’re done with it. Corticosteroids make you crazy. They just do. Add to that the chemical changes that come from stopping Gilenya and cutting my nortriptyline in half, and you’ve got my current craziness.

Don’t worry, I wasn’t having a bad reaction to Gilenya. I actually stopped this month so that Adam and I can start a family. Gilenya takes 2 months to completely wash out of your system, so there’s no thoughts of even trying until May at least. Adam wants me to keep everything regarding the impending pregnancy hush-hush until we’re actually 12 weeks pregnant. I think that’s totally reasonable. We don’t need an audience to our family planning. I just also think it’s important that I acknowledge that I’m not on any disease modifying drugs right now.

I think that I can reasonably say that I’m handling things mostly well. Rather than crawl into bed and mope, I’ve been cleaning, writing, and actively not self-harming. I thought about day drinking for a half a second today and decided that it would be the equivalent of feeding the beast. Instead, I dyed my hair and am slowly tackling the ginormous mountain of clean clothes that need folding.

Oh, and taking care of the dog, who needs to be taken out right now. I’ll never need to question whether I make a positive difference in Brisco’s life. 🙂 He’s a good dog.

SSDD. (Same shit, different day.)

Time Traveler’s Log

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

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

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

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

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

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

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

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

Making Time Travel Easier

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

Hey, me!

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

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

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

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

2.) Call your husband, Adam.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I hope this helps!

Me & My Big Mouth

Sometimes, I should just keep quiet.

Yesterday, I posted about how I planned to work out every day, regardless of fatigue. I was proud of the work I’d done on Tuesday, and thought I could maintain a tough attitude and get the job done no matter what. Honestly, it sounded like a great idea!  That is, until I got to the gym, was stretching before we started, and had a cluster of 3 or 4 seizures in a row. Adam told me in no uncertain terms that we were going home, and to stop trying to force myself to exercise. He didn’t want me to hurt myself.

Last night’s shaky fun-fest lasted most of the evening. I had so many seizures that I honestly lost count. It’s been a while since I was laid out like that. I vaguely remember being confused about where I was when we were on the car ride home, and I definitely remember being incredibly itchy, especially around my wrists, my neck, the middle of my back, and my toes. Adam suggested that the itching might be an aura, because it was most intense just before having another seizure.

Cannabis to the Rescue!

Adam thought that the itching was probably neuropathic, and not caused by allergies or anything else, because it came on all of the sudden and scratching didn’t make it stop. He suggested that I smoke a little to see if it helps. Not only did it make the seizures stop, but it also made the itching stop.

On January 1st, the medical marijuana pilot program in IL was slated to start. I haven’t read anything about it since then. No idea if people are actually running dispensaries yet or what, but I’m definitely going to ask my doctors to write me a recommendation. Fortunately, I don’t have to wait long. I have appointments coming up with both of my neurologists. I see my epileptologist on Tuesday of this coming week, and then I see my MS specialist on Tuesday of the following week. I’m hopeful that one of them will write it. I refuse to get back on any seizure meds because we’re planning to get pregnant and the seizure meds never helped me anyway. The only thing I can think that might be helpful would be a medrol dose pack, and only if this continues, because it would mean that I’m dealing with a relapse.

Under Pressure…

I’m also scheduled to see my cardiologist on Thursday of this coming week. That means I need to find or fudge my blood pressure journal. I have no idea where I put that piece of paper… but I do remember some of the numbers. So far, limiting sodium and taking the amlodipine and hydrochlorathiazide seems to be making a positive difference. My morning blood pressure has dropped from 165/105 to 141/91. It’s still not awesome, but it’s headed in the right direction.

Yoga tonight!

Tonight, Adam and I have plans to attend the 7:30 p.m. yoga class at our gym. They didn’t have night time yoga during the fall session, so I’m very glad to see they have it back at least 1 night a week. I love yoga. It’s simultaneously relaxing and challenging, and it makes me feel strong. There are also tons of sources out there that suggest that yoga is particularly helpful for folks with MS.

So, I missed 1 day of working out, thanks to seizures. It’s not the worst thing in the world, provided that I get back to it. If the seizures taught me anything last night, it’s to not write checks my ass can’t cash. I just have to keep doing my best.