Saturday, May 22, 2010


I'm am having a lazy day today and it's not MS related. My belly has been really unhappy lately and I decided that it needed to stay home and rest.

Way before MS diagnosis, I was diagnosed with Ulcertive Colitis (UC) I was still in college and I thought it was the worst news ever. I've learned to manage that disease quite well over the years--sometimes with medication and sometimes with nutrition and alternative therapies like Reiki and acupuncture. For the last several years, it's been all about diet although I did mention my belly when I received cranial sacral therapy last week. For the most part, I've been UC medication and UC symptom free. Maybe that's why I got complacent.

I don't know if it's age or what but my body seems to be more and more sensitive to what I eat. I learned early on that dairy was not a good thing and I gave it up. Very, very occasionally, I would indulge in cheese or ice cream and I would immediately suffer from UC symptoms. But now, it's also sugar and maybe wheat, too. So, my decision to start my day yesterday with a coffee (with milk) and a muffin was probably not the best decision. I've been paying for it every since. It doesn't help that I had licorice earlier in the week, I'm sure.

UC symptoms are bad enough but what comes later is almost worse. The symptoms really, really sap my energy. It's not unlike MS fatigue except that I feel as if zombies have invaded my body and sucked out all vitamins and minerals. I don't think I actually am paler but I feel paler and sort of fragile. I'm kind of a bad ass and I hate anything that makes me feel fragile.

So, here I am...lying on the couch, pale and fragile and pissed off. But I also have a new resolve to be kinder to my belly. It is, after all, part of the one body that I have, love, and need to live in for the rest of my life. I slept for about 10 hours last night (with a few interruptions from my cat scratching at the door this morning), I ate scrambled eggs and spinach for breakfast, and now I'm listening to NPR and thinking about an 80s party I'm going to later. I am resting. I am resolving.

“Sometimes the most urgent thing you can possibly do is take a complete rest” ~Ashleigh Brilliant

Thursday, May 20, 2010

Good MS News from Head to Toe

I don't personally experience foot drop or any other MS symptoms that affect my ability to walk (thank God), but I was very touched by this woman's tears of gratitude at the end of this video. I can only imagine how amazing it must feel to return to an earlier mobile state. Why on earth is this not covered by this woman's insurance company???!!!

This video was recorded by a fellow MSer who has done a ton of research about soon-to-be released oral MS drugs. Very exciting news. I would LOVE to stop self injections.

I heard about this last video (MS and Sex-Part 1) before I ever saw it. (There's also an MS and Sex-Part 2 that may be helpful for people who experience pain, spasms or cramping.) I am so glad that this woman was brave enough to record and post this honest account of how MS affects her sexually and how she refuses to let it keep her from fully experiencing pleasure. While I don't personally experience any "intimacy" issues with MS, I enjoy sex immensely so I can appreciate that this would SUCK HUGELY. I will give the same warning that the woman gives at the start of the video: If you don't want to hear some pretty explicit talk about sex and female genitalia, do not watch it. And, on a side note...whether or not you experience numbness issues and want to try some of the devices she suggests, I would HIGHLY recommend Good Vibrations (for mail order) and Athena's by Laurie (for hosting a really fun Tupperware-type party with your friends).

What about you? Do you have any good MS news to share?

Wednesday, May 19, 2010

Wednesday Words of Widsdom

I'm a Facebook addict. More often than not I fill my frequent status updates with quotes and song lyrics. Sometimes, I just like the song so much that I want to inspire the toe tapping and chair dancing that I was enjoying. Sometimes, a quote describe what I'm feeling or thinking in a much more eloquent way than I ever could. Sometimes, I hear romantic song lyrics and  I wish that the singer wrote them about me or that I wrote about some imaginary person yet to enter my life. I hope you enjoy the random and electic words of wisdom below that have been speaking to me lately.

"If you woke up breathing, congratulations! You have another chance." ~Andrea Boynston

"You've got to get up every morning with a smile on your face and show the world all the love in your heart. Then people gonna treat you better, you're gonna find, yes you will, you're as beautiful as you feel." ~ Carole King, Beautiful

"A successful man is one who can lay a firm foundation with bricks that others throw at him." ~ David Brinkley

"If you've never stared off into the distance, then your life is a shame." ~Adam Duritz (Counting Crows), Mrs. Potter's Lullaby

"I've decided that the stuff falling through the cracks is confetti and I'm having a party! ~Betsy CaƱas Garmon

"Make sure the fortune, that you seek is the fortune you need." ~Ben Harper, Diamonds on the Inside

"I don't like that man. I must get to know him better." ~Abraham Lincoln

"I got soul, but I'm not a soldier." ~ The Killers, All These Things That I've Done

"The heart is the only broken instrument that works." ~T.E. Kalem

"Driftin' so long, from myself and from the pain...Driftin' so long, I think I found a better way." ~The Dirty Heads, Driftin'

"When people are laughing, they're generally not killing each other." ~Alan Alda

"Cause Imma be shakin' my hips. You gon' be lickin' your lips." Black Eyed Peas, Imma Be (this one really loses something without the music.)

"Reach out, touch faith." ~Depeche Mode, Personal Jesus
"Don't leave me alone at this time. For I'm afraid of what I'll discover inside." ~Mumford & Sons, Roll Away Your Stone

"Nothing takes the taste out of peanut butter quite like unrequited love." ~Charlie Brown

"I want you to notice..when I'm not around...You're so fu&%$#' special. I wish I was special." ~Radiohead, Creep

"Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body." ~Elizabeth Stone

"Do you believe in rock-n-roll? Can music save your mortal soul? And can you teach me how to dance real slow?" ~Don MacLean, American Pie

"A good friend is a connection to life - a tie to the past, a road to the future, the key to sanity in a totally insane world." ~Lois Wyse

"Your lipstick stains...On the front lobe of my left side brains...I knew I wouldn't forget you...And so I went and let you blow my mind." ~Train, Hey Soul Sister

"May sleep envelop you as a bed sheet floating gently down, tickling your skin and removing every worry. Reminding you to consider only this moment." ~Jeb Dickerson

"I might have to wait...I'll never give up...I guess it's half timing...And the other half's luck...Wherever you are...Whenever it's right...You'll come out of nowhere and into my life." ~Michael Buble, Haven't Met You Yet

"Laughter is an orgasm triggered by the intercourse of sense and nonsense." ~Author Unknown

"I'm not ready and I'm not even close...I'm not like the rest...No I ain't like most." ~Leona Naess, Leave Our Boyfriends Behind (video below)

Tuesday, May 18, 2010

Me and Other Contradictions

I am a walking, talking contradiction.

According to my favorite of the definitions, a contradiction is a "a statement or proposition that contradicts or denies another or itself and is logically incongruous and/or direct opposition between things compared, inconsistency."

Regular blog visitors probably know this about me already. Sometimes I can feel really sure about something, write about it here, and then have some sort of inspiration or gather new information that shifts my entire perspective about the exact same subject. Then, the next time you hear from me on the topic, you may scratch your head and say "Wait a minute! That isn't what she said before!"

Or maybe  you don't notice at all because I'm talking about subtle contradictions. They aren't major core value issues like the fact that I'm a bleeding heart liberal, a feminist, a spiritual person, etc. (Can you imagine if, all of a sudden, I started writing about my decision to become a registered Republican working to get Sarah Palin into the Oval office? Ya right. In the words of Flo from the old Alice sitcom, "When pigs fly!".)

I'm talking about shifts in my perspective in personal situations. I can feel 100% sure that something happened a particular way and I am 100% sure of my opinion--usually that I'm right and someone else is wrong. But then I learn something new about myself and realize maybe...just maybe...I got it wrong or at least partially wrong. It's very disconcerting. I like to think of myself as footloose and flexible but I like black and white. Gray is too mushy for my taste. But I also know that the gray is where I grow. Maybe I should stop thinking of myself as a contradiction and, instead, think of myself as a work in progress.

I'm doing a lot of writing about my family of origin these days and trying to examine situations and tell myself the truth about what I wanted, how I was dishonest, how I reacted, and what I was afraid of.  I want to break some patterns so I don't repeat them with my own kids. That's the goal. Probably, like most things, it will turn out much different...and much better...than I planned. I want to grow and change but I hope I still recognize myself. I want to have an open mind. But I also want to know where I stand and make sure that I hang onto my edge. Is that possible? And, if so, can I get it now, please?!!!!

Monday, May 17, 2010

How do you eat?

Since being diagnosed with MS, I've changed my eating habits tremendously. Full disclosure: I'm eating a piece of cold pizza with the cheese and other toppings peeled off as I write this. In other words, I'm far from perfect or rigid about my eating plan.

Like most things, my MS diet is about progress not perfection. It's loosely based on the Swank MS Diet. Here's a quick overview of the Swank diet which I've reprinted from the Swank MS Foundation site. The pink parenthetical notes are mine.
  1. Saturated fat should not exceed 15 grams per day. (I don't actually count my fat grams but I am very conscious of avoiding things that are high in fsaturated fats--e.g., I rarely eat fried foods.)
  2. Unsaturated fat (oils) should be kept to 20-50 grams per day.
  3. No red meat for the first year.
  4. After the first year, 3 oz. of red meat is allowed once per week. (It's been a couple of years now and I think I've only eaten red meat twice during that time.)
  5. Dairy products must contain 1% or less butterfat unless otherwise noted. (I quit eating and drinking milk products over 10 years ago so this wasn't the huge change it would be for some people.)
  6. No processed foods containing saturated fat.
  7. Cod liver oil (1 tsp. or equivalent capsules) and a multi-vitamin and mineral supplement are recommended daily. (I take fish oil capsules, calcium tablets, Vitamin D, and a multi-vitamin everyday.
I also limit sugar and caffeine...most of the time, anyway. I am, by no means, completely "off" either substance completely. I've realized lately that chocolate, however, is a definite "no" in terms of my digestive well being. I've been abstaining more often during the last several days since I had an ugly run-in with some Reeses peanut butter cups last week. I didn't even partake of this BEAUTIFUL AND DELICIOUS (I'm told) DESSERT that a friend ordered at Radius the other night. Although we didn't take a picture of it (no evidence), I did have a teeny, tiny Earl Grey truffle that made me moan. Mmm-mmmmm.

Because I do a lot of other things for my MS and my general health, it's hard to know what to credit for how good I feel.  In addition to paying attention to what I eat, I do yoga (sporadically), get Reiki (occaisonally--although I'm going to take a Reiki I class in June to learn how to give it to myself.), do other body energy work (I just had my first session with polarity therapy and cranial sacral massage last week), I walk everywhere, meditate and pray, write, dance, and surround myself with loving and positive people. And then, of course, there's my daily Copaxone injections.

How about you? How do you treat your MS? Have you changed your diet since you were diagnosed?

Sunday, May 16, 2010

Just Another Little Piece of Me

I sometimes make fun of reality television or rather...the people who choose to put their lives on display on reality television shows (e.g.,. John and Kate, the Bachelor, etc.)  I know, I know. What a hypocrite! Personal blogs like mine are like the worst of reality shows. My dirty laundry is aired in public and I can't even blame editing for the perceptions that are promoted about me.

When I first started blogging and realized that people actually read my blog, I made a conscious decision to be all out there with my MS. I knew that if I was picking and choosing who I told, I wouldn't be available to help others with this disease. I also knew that if I wasn't visible, I couldn't possibly change public perceptions of what people with MS are like. I also made a decision to be honest and to try, really hard when writing here, to only present my authentic self.

I need to remind myself of those intentions today. Although I am the one who picks and chooses which parts of my life to share, I don't want to start being dishonest because of my fears of what others will think or how they will react. I don't mention names (unless they are people in the public eye) and I don't lie. I present my truth but I realize we each have our own truths and perceptions colored by our experiences. People are free to comment. I don't even moderate comments before allowing them to be posted. The only comments I've ever deleted are flirty ones that are more appropriate for a dating site and ones that I've received in Chinese and I suspect are spam.

I'm glad for everyone with MS who reads this blog. I'm glad for everyone who loves someone with MS who reads. Those who are simply curious perplex me but I figure...whatever. What bothers me though, is when someone reads something here and decides that you know me or that I am speaking to you directly . You don't and I'm not. It's not always about you and you can't always draw conclusions about the whole from one little piece.  Counting Crows say it much better than I can in Have You Seen Me Lately: "You got a piece of me/but it's just a little piece of me."

But I need to let go of that. If I spend too much time defending or explaining myself on or off the blog, I can't do what I want to do here. I won't be able to be honest, authentic, and, ultimately helpful.  What others think of me is none of my business.  Perhaps I should tattoo that little gem on my inner arm to help me remember it.

Friday, May 14, 2010

Just for Today Joys

Just for today, I'm done listening to the sad songs. I will fill my ears with music that make my toes tap and my spirit sing instead of my heart ache.

Just for today, I will take care of myself. I will eat healthily, take my vitamins, give myself my shot, go for a walk, do yoga, and get enough sleep.

Just for today, I will surround myself with people I love and respect who love and respect me back and I will cherish those relationships.

Just for today I will laugh loudly and often and not worry about snorting or cackling.

Just for today, I will treat myself with love and kindness and be my biggest fan and protector.

Just for today, I will be brutally honest with myself and open my heart to hear the truth that others show me.

Just for today, I will do my best work. I will feel proud when I toot my own horn without apologizing or diminishing my talents.

Just for today, I will be open to learning something new and expanding my self-knowledge. I will appreciate the lesson in whatever form it arrives.

Just for today, I will trust that the Universe has much better things in store for me than I could ever imagine on my own. I will strive to be fully present.

Grief is Weird

Grief is weird. It can sneak up on you when you least expect it and come out every which way and sideways. Sometimes I hear a song and start to cry and I'm not always sure what I'm feeling sad about. Or sometimes, I fill my world with so many distractions that are so effective that I temporarily forget what I was distracting myself from. But then they stop working or I get tired of the negative consequences, and I come up for air to realize the truth: The grief was temporarily numbed but it's still there.

I've had a lot of losses. Within the last three years alone, I was diagnosed with MS, my grandfather died, I stopped driving because of my diminished eyesight, my 20-year old cat died, my ex-husband remarried, my dad died, and my boyfriend of 3 1/2 years broke up with me. I could make a much longer list of the joys I've experienced during that same time period but that's not what this post is about.

But it's not about pity either. I just know that I am not unique and that whatever I'm feeling is usually universal. So maybe there are others here who will relate to the grief I'm experiencing this week. Or maybe not. Either way, writing is one of my healthier coping mechanisms so I'm going with it.

This week, chocolate was one of my coping choices. I gave up sugar earlier this year and I quit eating dairy over a decade ago. Chocolate is definitely not good for me. Suffice it to say that there are concrete negative consequences when I eat it. So why did I do it? Because I believed the lie that I told myself. I thought "things will be different this time." They weren't.

Sometimes, I distract myself with crushes...or dating...or obsessing about people who are no longer in my life. While these distractions look different on the surface, they all share one thing in common. They are all based on the lie that my self esteem is dependent on what someone else thinks of me. It's not, by the way.

There is no way through grief but to go through it. Distractions can take me off that path but because I'm a person who tries to live in the truth, I get to a point where I can't believe the lies anymore and I end up right back on the path, in the same exact spot where I jumped off. The truth is that I'm sad sometimes. I miss people I've lost sometimes. Sometimes, I'm sad about the things that MS has taken from me. I'm lonely sometimes. Sometimes, the answer is not to Pollyanna myself through the feelings. Sometimes, I have to feel them and realize that they won't kill me. Sometimes, I have to grieve. And you know what? Loud, ugly booger cries are going to move me along that path a hell of a lot faster than chocolate or dating. And then, I can blow my nose, wipe my eyes, and go out and have fun.

Monday, May 10, 2010

Happy Mother's Day!

To say I have a complicated relationship with my mother is a bit of an understatement. Mother's Day has often been filled with some pretty intense emotions. Today was no different.

Today was no different but as the day comes to a close, I feel more good than bad. Instead of being about how I do not have a mother in my life, it's been about being a mother--the crappiest and most amazing role I will ever have.

If you are a mother or otherwise nurture people, I hope you had a very happy Mother's Day!

Sunday, May 02, 2010

Feel Good Moments

These are the things that made me feel good today:
  • Seeing cool people who I like who like me back at church this morning.
  • Almost bursting with pride when my self-assured 10-year old walked to the front of the "big church" and was eloquent beyond her years making an announcement about her religious education class raising money for the local animal shelter.
  • Having several people notice and compliment my newly painted purple toenails!
  • Having a picnic on the train playground after church with the kids and remembering doing the same thing when Ruby was a toddler.
  • Finding Lovely Bones--a book I've wanted to read--in the large print section of the library.
  • Savoring a single dark chocolate Hershey's Kiss wrapped in purple foil and then saying "no" to a second one because one was enough. (No small feat for this sugar addict.)
  • Playing Sorry with the kids after dinner.
  • Snuggling with my Zane to read a bedtime book that I believe I read when I was younger--Freckle Juice by Judy Blume.
  • Traveling the world vicariously while watching The Amazing Race. 
  • Feeling beautiful all day in my clingy wrap dress but then really enjoying the feeling of taking off my spanx at the end of the day.