I May Not Be A Rockstar, But I Have Rockstar Parking.
Just Life.
The Perfect Day
01 month ago
by Rae
in Just Life.
HAWMC Day #14: My Dream Day. Describe your ideal day. How would you spend your time? Who would you spend it with? Have you had this day? If not – how could you make it happen?
I am fortunate. I have lived a dream day. It was the day of Adam and my wedding.
I was surrounded by the people I love most in the world, and despite being ridiculously sick (I had the flu – on top of the MS and seizure disorder!), it was damn near perfect.
Could I have lived without the illness? ABSOLUTELY. But the day had everything about it that a perfect day ought to have.
- I got married to the love of my life – a man who treats me with kindness, respect, patience, caring, compassion, and all the love I could ever ask for, whose kiss lights my soul on fire and whose bedroom skills still make me blush. I felt so deeply loved and was able to reciprocate that love fully in a way that is everlasting. And the best part is, we still feel that way about each other and get to rekindle that commitment daily.
- I was surrounded by my best friends and family from all over the country. I felt totally loved and as though I completely “fit in” and was safe wherever I was. That secure feeling is one I will never forget.
- We all got to eat incredibly delicious food! (I’m a simple girl. Delicious food makes my whole day!)
- There was great music and dancing at the reception! I love to dance, even though I look silly doing it. It’s my favorite way to be active and work out. Can you say, “Living room dance time Me-party?” I can!
- We had a karaoke after-party for everyone that night, which meant that there was singing! I love to sing. I try to do it every day, even if I’m alone.
- Despite my illnesses, we didn’t let the seizures or feeling bad get in the way of having a good time. My happiness showed through all day long. That’s the way I want to live my whole life.
- We didn’t spend our time worrying about anything but what was going on that day, and we were just in the moment. It made that time very special.
- I fell asleep the second my head hit the pillow, and I had the best sleep! There are few things better than that.
Care to see our wedding ceremony? It was a lot of fun! Adam and I wrote it ourselves, and even got feedback from the wedding DJ that it was the best ceremony he’d seen in 30 years of DJing!
You can check it out at http://www.rachael-and-adam.com — just let it load for a while. It’s a pretty big file.
10 Things I Could Not Live Without
01 month ago
Today’s suggested topic is “10 things I could not live without,” and truth be told — there isn’t much I couldn’t live without. I know Maslow’s hierarchy of needs. I know I need food, water, shelter, security…
So I guess I’ve got to take this prompt a little tongue in cheek, realizing that I am a spoiled brat, and I’m going to think of things where, if they suddenly disappeared from the world, it would TOTALLY SUCK.
1.) Toilets and indoor plumbing with clean running water.
People in America take this for granted, but there are still parts of the world where this is not commonplace. I admit my prissiness. I could not live somewhere that lacked this.
2.) Electricity
Just like indoor plumbing, I am spoiled on the juice! Even my toothbrush is electric.
3.) Central Air Conditioning/Heating
With my condition (MS), when it gets above 80 degrees, my body starts doing wonky things! So, wherever I live has to have air conditioning. Besides, I think Kevin Smith wrote the best line about central air in the movie Dogma.
No pleasure, no rapture, no exquisite sin greater… than central air. – Azrael
4.) The Internet and all its vast goodies
Ok, #4 is probably a lie. I lived before the internet and computers. I could live without them. But I spend most of my days online. It would be a major lifestyle switch to no longer be able to look up answers to life’s questions quickly, or to not talk to friends about minor bullshit over Facebook immediately, or to not be able to stream TV shows, or not to be able to get directions from my phone from wherever I am. OH WHAT A HORRIBLE WORLD IT WAS 25 YEARS AGO. *lol*
5.) CARS
I cannot drive, so it is very obvious to me how much the world runs on people’s ability to drive places. If it weren’t for cars, our economy would not exist in the state that it is in. Our communities would be planned differently. We would all be in better shape because we’d have to bike everywhere or ride trains places. Holy crap, do we use our cars, people.
I CANNOT WAIT TO GET A SELF-DRIVING CAR. Have you seen this?
6.) Amazon.com
I remember a time when if you couldn’t find something at the store in your area, you were totally screwed. Amazon has everything. Everything! And I’m an affiliate, which means, if you click my link, I get credit for your purchase. I get credit for my own purchases! Amazon rocks my world. So I’m saying I couldn’t live without it.
7.) EMDR
On a more personal note, I don’t think I’d still be alive if it weren’t for EMDR therapy. Eye Movement Desensitization and Reprocessing is responsible for why I no longer carry the diagnosis of Post Traumatic Stress Disorder, and why I no longer am suicidal or deal with suicidal ideation or compulsion as I have for years.
I have a big-ole lesion in my corpus collosum which stops my brain from naturally being able to communicate from the left side to the right, so EMDR, which focuses on whole brain activation, helps information move between the sides of my brain. It allowed me to heal from old wounds.
8.) Music
I have practiced a musical instrument or voice pretty much every day since I was 7. I cannot imagine a life without music. In fact, we found out that music is the key to bringing me back to a proper memory-place-in-time from post-ictal confusion! Neurologists are using music theory to help old folks with Alzheimers in the same way right now too. Music is pretty much magic.
9.) Medicine
There. I said it. I have an active seizure disorder, and without my meds, I’d be shaking all day. I could not live without my meds, much as it’s a shame to say and to know.
10.) LOVE
I saved the best for last, you cheeky monkeys.
Stream of Consciousness
41 month ago
by Rae
in Just Life.
This morning I looked at myself in the mirror and realized that I am 31 years old, a housewife, and not a mom yet. And that this color of blonde is not flattering. But that’s a whole other thing, and not at all worth blogging about.
Truth be told, I’ve been baby-crazy for about a year now – but all it takes is a day with my niece for me to say to my husband, “I don’t have enough energy for kids.” The beautiful, talented, smart, and fantastic Dottie Lou is on a constant sugar high at Buscha’s (Grandma’s) house, when I see her. There’s just no keeping up! 
Not even for her mommy… so I feel a little better at least.
MS is supposed to go into remission during pregnancy, so I kinda have mixed feelings on the whole “becoming a mother” thing, but I feel, deep in my heart, that I want to have at least a couple of kids, if not 3. My Dad joked that I should just stay pregnant to keep the MS at bay when we first found that out. Adam didn’t think it was a bad idea. Part of me didn’t think so either…
There’s something unusual in me when it comes to being a baby-maker there — a pull, as if to say that our family’s not complete, and that I need – *need* to be making life. Like that’s the whole point, and I’m missing it, if I’m not using my femininity to its utmost. Like baby-making is my JOB and everything else I do is just window-dressing.
But I know things will happen when they need to happen and I need to just focus on the “now.”
It helps that I have so many friends whose parents have MS, because I was worried for a while that my kid(s) would think of me as a burden, and none of my friends view their parents that way. So that’s good.
I just feel this horrible tug right now that something — someone — important is missing. And that I love them, and need them with me, very much. I guess that’s what they mean when they talk about maternal instincts. And this whole time, I didn’t even think I had any!
But if my kid(s) ever read this, I hope they know they were thought of and very loved well before they came to be. And that their father and I considered the possibility, albeit 5% that they could end up with MS, and that their daddy and I were willing to gamble that possibility because life is worth it, even with challenges. Besides, everybody has something, and DNA only accounts for 30% of the crap you can die from, or so I read today!
Don’t you love little stupid factoids like that? I do.
Anyway, today is Adam’s 33rd birthday, and the house is a bit messy, so I really ought to take the time to do some dishes, put up some laundry, and tidy up the place a little while I still have some energy going from breakfast and my purple Zipfizz.
I don’t know how I’d make it without that stuff. I know that Zipfizz is so NOT paleo, but without either Zipfizz or 5hr Energy or a ton of coffee, I don’t know how I’d get through the day. Fatigue is just a bear. Or a ton of lead weights. You choose.
Anyway, I hope everyone is having a really good day. I’ll probably get on here later to translate Chapter 40 of the Tao de Ching, because, well, I like translating it, and it’s good for me spiritually. And content is good: what’s a blog without content? Boring, that’s what.
Love, Peace, and hopefully not too much grease – because that just makes cleaning tougher.
-Rae
Theme Song – “Dare You to Move”
11 month ago
Well, today in the Health Activists’ Monthly Awareness Challange, I’m supposed to come up with a theme song for my blog.
This is challenging, for many reasons, but primarily because the focus of my blog is so splintered. I talk about MS, seizure disorder, the paleo diet, the Tao de Ching, and my life… but the focus of the blog is supposed to be about living well with any disorder.
Those of us with chronic illness are constantly doing the best we can.
I think I’d have to choose Switchfoot’s “Dare You to Move” as this blog’s theme song. It talks about picking yourself off the floor, which so many of us with MS and seizure disorder and depression have to do on a regular basis. It’s all about fighting against the negative and continuing forward.
I hope you enjoy it.
Dear 16 Year-Old Me…
21 month ago
If I’m remembering things correctly, you’re a junior in high school, are section leader of the pit percussion section of the marching band, the percussion section leader of the wind ensemble band, are first chair of the west TN orchestra, and have just made all-state vocal ladies ensemble. You’re also in Southern Exposure Choir, Honor Choir, and have been helping out at Temple Israel teaching kiddie choir with Cantor Kaplan. This summer, you’re going to TN governor’s school for the arts instead of Sewanee Summer Music Center, and you’ll be first chair percussionist there as well, for the 2 weeks you’ll be able to stay there before a family emergency.
You are at the height of your musical career, right now. ENJOY IT.
That’s not to say you won’t keep studying your art, but there will never in your life be so many performance opportunities that are scheduled for you – ever. Being an adult means you have to make your own performance opportunities and find your own bands to be in.
But that’s not what this letter’s supposed to be about.
You know how I hate spoilers, so this one is going to be a real shit. You have 10 years left to enjoy nearly perfect health, and though you waste 5 of them on a relationship that scars you emotionally and physically, you survive those years, come out stronger and end up meeting the love of your life: a man who treats you with immense respect, care, and gratitude, who shows you what marriage is supposed to be like.
Everything deeply and thoroughly inappropriate about which you tease, will bring you severe suffering.
“Gee, I wonder what his handicap is? Must be stupidity.” — Nope. Might be Multiple Sclerosis. Or Fibromyalgia. Or arthritis at an early age. Be prepared for people to leer at you and shout nasty things.
Those retard shaking motions you and Mandy make, with your hand on your chest, whenever someone’s being stupid? They happen to you frequently during seizures.
There will even come a day, when you say, “My age should not be my pants size.” and it’s not in your teenage years, babygirl.
You will learn the meaning of the word “humility.”
But you will also learn what a fighter you are.
You won’t allow yourself to stay in pants that are larger than a size 14 for very long. You will find medications so you’re not constantly shaking. And trust me when I say you love your rockstar parking.
Nothing I can tell you will stop you from being diagnosed with multiple sclerosis at the age of 26. They don’t know what causes it. And it’s not your fault (or mine!).
So keep doing things the way you are: fill every minute of every day with as much activity as you can and keep dreaming of getting the fuck out of Memphis, because you do make it out. Twice. And you even see the beauty of the city by the second time.
And don’t think, “This’ll never happen to me.”
BTW — Watch out for that word “Never” – every time you use it, it’s as though the Universe makes a promise.
You said you’d never go to law school, and now you’re a JD. You said you’d never stay longer than a day in Chicago again, and now you live here. You said you’d never smoke pot, and now it’s the only medicine that makes certain pain go away – you use it almost daily. If “never” means “DEFINITELY” – then you’re gonna end up back in Boston someday too. Just warning you.
I want to say just one more thing before I end this letter.
I am incredibly proud of your achievements to this point. As a child you have done admirably. As a sister, you protect the everloving crap out of your brother, and as a daughter, you work like crazy to make your parents proud. Don’t forget that you’re doing this work for yourself too. These grades, these accolades: they’re on Rachael’s resume… no one else’s.
Just look at what you can do when you put your mind to it.
Chapter 38: Goodness Theory (Like Music Theory, but with Virtue)
31 month ago
The highest form of goodness
is not kindness or morality.
It’s inherently virtuous.
Inferior goodness can still be considered goodness,
because the acts are inherently good, but they aren’t the best.
The highest form of goodness
is known as “Wu Wei” – or being yourself –
as well as doing nothing but trusting in the divine plan that you are in the right place at the right time, simply because you’re there.
Inferior goodness lacks a sense of self. It doesn’t believe in its own wu-wei, so it pushes its own agenda, unintentionally muckin’ stuff up here and there while it pretends to be who it thinks it is.
The highest acts of benevolence occur without pretense.
In constrast, higher acts of “righteousness” are nothing but pretense.
Superior acts of morality or correct ethics occur,
And when no one responds, those ethics impose their righteous obedience.
Thus, when one loses “Tao” (the way) there is still “De” (good acts/benevolence).
One may lose the good acts!
Forsake benevolence, and righteousness still remains.
Forsake righteousness and justice, and there’s still morality and ethics.
Propriety alone: morality and ethics done because it’s the right thing to do
reduces loyalty and faith to almost nothing.
It is the beginning of disorder.
And in this stupidity – this emptiness where loyalty and faith do not exist
This tradition is the “flower” of the Tao,
its ignorant beginnings.
(Where else does the hollow begin, but in an emptiness?)
Thus, it is a Great person who dwells in the Solid and not the shadow.
She dwells in the fruit of the Tao and not in its flower,
preferring Benevolence over empty tradition,
she leaves propriety for beginners and focuses on what she can do to make things better for people now.
Keep Calm and Carry On…
01 month ago
So my mom actually bought me one of those pictures — no bologna. And it’s helped me immensely with post ictal confusion. When you come back from a seizure and one of the first things you see is a command to keep calm and carry on, you tend to obey.
Is it trendy? Sure. But it helps to remember that by keeping a calm head in almost all situations, you give yourself the opportunity to make things better instead of worse.
You gotta give the Brits credit for that. 
The best conversation I had this week…
01 month ago
by Rae
in Just Life.
is what I’d be writing about, if I could concentrate on anything aside from the ridiculous pain in my hip area.
I cannot believe I feel the absolute need to show my MRI to my mother-in-law, but after mentioning deep hip pain to a woman who has had surgery on her hip, I personally feel like I would show my oligonical bands to her if I could – tough lady that she is. (And I should clarify, she’s tough – not tough on me!)
Today was hard, despite my being in a great mood, surrounded by family and love, and having a good time. And honestly, writing this right now is hard, when it doesn’t need to be.
Some days you just have to give yourself over to medication and then sleep after a while. It’s better to have a jam-packed few hours of wonderfulness with folks you love and then a sleep coma than no fun at all.
REMEMBER: When playing hold em with chips with family members, you always stay in for the flop. Always. Or you’re a pansy.
Happy Passover & Happy Easter!
11 month ago
by Rae
in Just Life.
Hey Party People!
It’s a good weekend all around. It’s time to celebrate, regardless of what religion you are, really. If you’re Jewish, it’s time for Passover. If you’re a flavor of Christian, it’s time for Easter. If you’re non-religious, it’s finally springtime!
The sun is finally staying out longer, the temperatures are rising slightly, and the flowers are blooming. Winter is officially OVER.
Today, I’m going out to get an inexpensive stock pot so that I can make Matzo Ball Soup for my family.
YES, I’m painfully aware of how non-Paleo that is. NO, I don’t care. Some things are worth breaking the diet for. This is one of them. Besides, it’s a once a year type thing, and in a very funny non-traditional sort of way, it’s going to be paired with ham as a main course, so it’s not like I’m going carb crazy or something! (or keeping kosher!)
The best part about spring, in my opinion, aside from all the beautiful blooming flowers and trees is that we can take walks outside again, and that really helps me incorporate exercise into my daily life.
Exercise is so important for folks with MS because if we let our muscles atrophy, we can end up in a wheelchair so much faster! I am determined to stay out of a wheelchair for as long as possible! That means walking some every day.
Besides just getting some good exercise, it’s also really great for the spirit and good for relationships if you have a buddy who walks with you. Adam and my relationship really blossommed when we were going on walks to Blockbuster or to the park together back when we were living in Glendale, and so whenever we go on walks nowadays, it’s got a romantic throw-back feel to it, which makes exercising that much easier for me.
I hope that no matter what you’re doing this weekend, it involves some sort of activity that gets you off your couch and out into the sunshine!
This weekend celebration is all about appreciating the newness all around us as the world sheds its old, and puts on a new coat of pretty! It’s time for cleaning, freshening, and for beauty and good attitudes to get their start.
I hope everyone reading has a wonderful beginning to their Spring!
I write about my health because…
31 month ago
by Rae
in Just Life.
I write about my health because I think it’s important to show how different that MS and seizure disorder is for every person is who has it. I write because it is cathartic and because it helps me to express and feel at least a modicum of control over the life that I live.
I’m unsure how I’m supposed to freewrite for 15-20 minutes about that. It seems pretty simple and straight forward to me.
MS is a disease that takes away the illusion of control. Writing gives that illusion back to you, at least in some part, because you’re recognizing, accepting, and holding your weaknesses in a special form of reverence.
MS hides inside you because you look fine. And I can’t tell you how many times I’ve heard, “You look great!” as if to say, “You’re faking.” I write to fight against the perception that I’m faking.
Hell, I’ve even considered posting my MRI on this blog just so others can see what I’ve seen… my brain riddled with its 7 lovely lesions. Gaping holes, where there used to be functionality.
I write about my health because if I don’t give the mourning part of me credence, it will take over the rest of my life, and I can’t give it that much power.
I write so I don’t feel sorry for myself.
