Thursday, December 09, 2010

My New Ride

I opened a big envelope earlier today and read that the MBTA said "yes" to my application for The Ride. According to their large-print handbook that accompanied the certification letter, "The Ride is [the MBTA's] paratransit program, which provides door-to-door public transportation to eligible people...who cannot use public transportation, all or some of the time, because of a physical, cognitive or mental disability."

I have optic nerve damage and vision loss as the result of my MS. I don't walk with a red-tipped cane, have a seeing-eye dog, or read Braille but I do have low vision and I no longer drive. I take regular public transportation almost everywhere that it goes but it doesn't go everywhere that I want to go. And, depending on my destination, I sometimes have to take a trolley, a bus, and a train for an hour and a half to get somewhere that's only a 30-minute drive away. I get a lot of rides from my wonderful friends and neighbors, but it's nice to go places by myself and on my own schedule sometimes.

In spite of all these no-brainer reasons for The Ride, I waited about a year after I stopped driving to ask my neurologist to sign the application, and then I waited another year to mail it in. I had a whole lot of excuses but only one real reason. Pride. I didn't want to be someone who needed The Ride.

And, I have to say, I still don't. And it's still all about pride. What will the other riders will think of me? ("Why the heck is this able-bodied woman scamming a seat on The Ride?") What about the neighbors? ("Oh! Julie must be going down the tubes with her MS. Poor thing!"). What happens if I flirt with a handsome man in Ikea and he walks me outside and is about to ask for my number when my short bus pulls up?

I'm thinking that, for my inaugural trip, I should pick a place to go all by myself that I couldn't get to on the train. It should be something fun and not something absolutely necessary like a doctor's appointment. Maybe I'll go to Ikea (to troll for cute men who don't have anything against visually-impaired people) or to the DeCordova Museum.

Or maybe, I'll stare at the certification letter for another year. 

Monday, December 06, 2010

Sunday, December 05, 2010

Partner as Caregiver?

I've been thinking about my last serious boyfriend lately. I think it's just because of the holidays approaching which make me think about people that are no longer with me. Because we broke up less than two weeks before my dad died, the grief of those two events is forever melded together in my mind. So, Christmas is coming, I'm missing my dad, and then I start missing him a little, too.

On bad days, I remember myself as the victim who was heartbroken after the relationship ended against my will.  Awwww. Poor me. Except that's not true. The truth is that I started being honest with myself about what I wanted in a relationship and when I shared that with my ex, we realized that we weren't in the same place and didn't want the same things. I wanted to move forward and he was happy with things they way they were. So, it ended. I'm pretty sure that if I had been content, things would still be going along the same way two years later without any further commitment. Except that that wasn't what I wanted. And, you know what? It's STILL not what I want. Although I miss being in love, I don't miss settling for less. I don't miss silencing my inner voice just to avoid being alone.

I was talking about all this with a friend this weekend and she asked me if I thought MS had anything to do with our break-up. Although the issue was never raised, it's hard to say whether or not MS was a factor. Because I have MS, it's impossible to know if things would have been different without the MS. I've never managed to find a crystal ball that shows me the parallel universe where my life is not exactly as it is in this world. When I met my ex, I didn't have MS. We had been dating exclusively for almost two years at the point that I was diagnosed and then we dated for another year and half before we broke up.  Who knows? Not me.

So, I told my friend honestly that I didn't know, but that it didn't really matter because I am who I am and part of who I am is someone with MS. Love me and accept the MS.. Her response was like a punch in the gut. She said, "Maybe he couldn't commit to being your partner because he worried about being your caregiver in the future."

I don't blame my friend for her brutal honesty. I had thought something similar myself but I never said or heard it outloud before. But there it is.

And because it's the time of year that I have to work extra hard at RSVPing "no" to every possible self-pity party, my mind started to race: "Oh my God! I'm going to be alone forever!;" "No one is going to want me;" etc, etc, etc.

SCRRRRRREEEEEEEECH. Thankfully, I put the breaks on that little trip to nowhere lickety, split. Here's the pep talk I gave myself to get back on track:

I don't need a caregiver today. I care for myself. Anyone that I'm with could be the one to end up needing a caregiver. My MS might bring that possibility to the forefront, but isn't that a possibility in any relationship?  Isn't that part of the risk of spending your life with someone and growing old together?  Most people don't age without issues. I have Multiple Sclerosis and Ulcerative Colitis, but I'm a pretty healthy 46-year old woman in every other respect. I don't drink, smoke, do drugs, I meditate, eat healthy, have loving relationships, and I stay relatively active.

Maybe I'm in denial but I don't think it makes sense to plan my life around potential disability. Am I crazy?  I mean, yes, I have MS, but I've had it for three years and I feel great. My vision issues are real and have taken away my ability to drive, but even if it gets worse, there are plenty of completely blind people who don't need caretakers.

So, the pep talk worked. I've back on my track of gratitude, trusting that, with a higher power that lives inside me, I will never truly be alone and that I will be ok, no matter what.

Saturday, November 20, 2010

Shattered Confidence

I just dropped a full jar of jelly on the kitchen floor. These are the things I thought about as I cleaned up the sticky purple goo-covered shards of glass:
  • Is it MS?
  • People without MS also drop things on the floor.
  • Now I have no jelly for my toast.
  • Am I extra clumsy because I had the fashion show yesterday and then stayed out dancing until after midnight last night with no nap in between?
  • Is it the effects of the sugar in the Halloween candy I stole from my children earlier today?
  • Is it MS?

Friday, November 12, 2010

Good Seats Still Available!

Fashion Plates: A Fashion Show and Luncheon

Fashion Plates
Real women , real stories…all for a good cause!

Please join us at

 “Fashion Plates”
A Luncheon and Fashion Show

to benefit the Greater New England Chapter of the
National Multiple Sclerosis Society
Treat yourself to an enjoyable afternoon of food , fashion and fun!

 Join us on
Friday , November 19 , 2010
11:30AM - 1:30PM

Sheraton Boston Hotel
Grand Ballroom
Boston , Massachusetts

   Individual Seat:     $   100
Tables of 10 Seats: $1 , 000

To purchase tickets , tables , or raffle tickets , please
view the event website.
For sponsorship opportunities , please contact
Kara Kelley or call 781-693-5129.
Presented by:
Ports & Company
Sheraton Boston Hotel

National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue , Suite 6
Waltham , MA 02451-1115
tel:  1 800-344-4867
fax: 1 781-890-2089

Thursday, October 21, 2010

More Than Just Pretty Faces

2009 Fashion Plates Fashion Show
Next month, I'll be walking the runway for the MS Society's Fashion Plates fundraiser for the third consecutive year. In the past, I've gone for the clothes selection with the personal shopper and then showed up the day of the fashion show to have my hair and makeup done by a team of professionals. Not too shabby for a suburban mom who shops at T.J. Maxx and gets her makeup at the drug store.

This year, I decided to help with the event planning, too, and I volunteered to interview my fellow models for the program bios. What a treat!

Each woman I've interviewed has a different diagnosis story and their disease symptoms and treatments vary considerably. I've heard it said more than once that if you put 100 people with MS in a room, they would have 100 different tales to tell. That's certainly been the case for the four women I've talked to so far.

Some had symptoms for years before they were diagnosed and some have similar stories to mine where they went through a whirlwind of specialists and tests that ended with an MS diagnosis just days after presenting with a single issue. I know we get what we get and no one's able to choose how or when they are diagnosed, but I'm incredibly grateful that I'm in the latter group. If I had been visiting doctors for years wondering if I was imagining a list of unrelated symptoms, I might have ended up in a padded room. Or maybe that's just further evidence of my questionable mental state. That's OK. I'm the fun kind of crazy.

But I digress.

For all the differences, I found common themes in these women's stories, too. Maybe it's the kind of person attracted to this event. I guess you have to feel pretty good about yourself--and life, in general--to strut down a runway. Or at least not give a crap about what other people think.

Every woman I interviewed was incredibly positive. When I asked how MS had changed their lives, they each talked about the unexpected gifts they found inside the ugly wrapping paper of MS. I heard about how their priorities shifted after diagnosis and how they now appreciate what they have so much more. Although MS is not a fatal illness (don't get me started on that misconception!), it's made each of these women realize in a new way that the future is uncertain and how important it is to focus on the present.

Without exception, and regardless of their level of disability, everyone wanted me to know that they were not defined by their MS. Like me, they are multi-dimensional people who live fully now and are more active and involved in life than many people who don't have a chronic illness.

I am proud to be in their company. I hope people living in the Boston area (or people who want to visit the Boston area) will consider attending this inspiring event on Friday, November 19.

Thursday, September 23, 2010

Taken by Mouth

The FDA has, at last, approved a new, oral drug to treat MS. This is thrilling news for those of us who do not particularly enjoy daily or even weekly self-injections. I know this medication might not be right for you or for me--I plan to discuss it with my neurologist at my next appointment. Either way, I think this is the first of many oral options that will be available to us so it's worth celebrating.

The NY Times article is here.
Or, check  out the Wall Street Journal's Health Blog.

Tuesday, September 14, 2010

I Pity the Fool Who Pities Me!

I just found out about a Make A Wish type program for people with MS.  Did I miss something? Did the four neurologists I've seen since I was diagnosed with Multiple Sclerosis forget to tell me that I'm dying?  Did I somehow, in my three years of research about my disease, miss the part about it being fatal?

So, why in the world would the fact that I have MS qualify me for a free vacation?  I am many things but I am not pitiable.  If you want to send me on a vacation because I'm clever or otherwise worthy...awesome...but because I have MS???!!!! . I think it's cool that they are also offering power wheelchairs but the vacation piece baffles and offends me.

Maybe I'm missing the boat--literally as well, as figuratively. Maybe I should jump on any opportunity to capitalize on my status as a person with a diagnosed, incurable (so far), chronic illness. Naaaaaaa.  Call me crazy, but I think it's more important to change perceptions. It's programs like this one that inspire others to give me the head tilt, arm squeeze, and puppy dog, teary-eyed reaction I love so much when they find out I have MS. I'd rather save my own money or have a stay-cation than perpetuate the belief that an MS diagnosis is as sad or tragic as a child with leukemia. That is tragic. That is sad.  MS is not. It simply is what it is. It sucks sometimes, and some of us are or will be disabled by the disease, but we are not dying.  But wait...let me speak for myself. I am not dying. I am not dying of MS and, actually, I don't even plan to die with MS.

I consider myself fortunate. I was not diagnosed with stage four ovarian cancer. I would guess that if I was, I would be thrilled to learn that all I had to do to stay alive would be to give myself a shot every day and pay attention to things like nutrition, stress, sleep, etc. that are things everyone should pay attention to anyway.

No one wants MS. But you know what? If we all put our problems into the center of the room and were magically allowed to really see what it was like to live with everybody's various stuff before taking something back out, I bet we'd all end up taking our own crap home with us.

MS has changed me and my whole life, but it's not all bad. In fact, most of it is really, really good. Yes, you heard me say it...again. I get grief from others with MS every time I say that but it doesn't make it any less true for me. Some people tell me that I'm just one of the rare, lucky ones and that I do not know what their pain is like. That may be true. AND...I do know what it's like to lose the vision in one eye due to MS-related vision issues and the resulting optic nerve damage. I know what it's like to have my vision deteriorate to the point when I can no longer drive and sometimes have trouble picking out my own children in a crowd. I know what it's like to experience fatigue. I know how scary it can be to experience a new, temporary symptom like numb feet and not know whether it's the start of something permanent. I know how scary it can be to go into the neurologist's office to get the results of my latest MRI series, not knowing whether or not the shots I hate giving myself so much every single day are working and stopping the progression of the disease. In other words, I have just as much right to my feelings as anyone. I qualify. I've paid my dues. I have MS. And for me, it's a blessing wrapped in a crap-encrusted curse.

I've learned how to take care of myself in a way that I never did or would have otherwise.  I've learned how to prioritize. I've accepted that rest is a perfectly valid activity. I realize that there are only 24 hours in a day and it is no longer my goal to stay busy for as many of those hours as humanly possible.  I've finally, finally, finally learned how to ask for help and accept it when it's offered. I've started to learn the importance of balance. Most days, I live in the present. Most days, I listen to the voice in my heart and tell myself the truth. I've learned to stick up for myself even when it's scary and people don't like it. I've learned how to bitch and whine and vent and then let it go and focus on all the wonderful things that the Universe brings me every single day. MS has made all of that possible for me.

I don't need a wish and I don't need a free, pity vacation. And just for today, I don't need a power wheelchair either but I hope that someone who does need one, gets a really snazzy one with a horn that plays I Will Survive.

Sunday, September 12, 2010

Wise Words by Others

Random quotes about illness:

"The..patient should be made to understand that he or she must take charge of his own life.  Don't take your body to the doctor as if he were a repair shop."  ~Quentin Regestein

"Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.  Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place."  ~Susan Sontag, Illness as Metaphor, 1977

"If I had my way I'd make health catching instead of disease."  ~Robert Ingersoll

"Physical ills are the taxes laid upon this wretched life; some are taxed higher, and some lower, but all pay something."  ~Lord Chesterfield

"To feel keenly the poetry of a morning's roses, one has to have just escaped from the claws of this vulture which we call sickness."  ~Henri Frederic Amiel

"The I in illness is isolation, and the crucial letters in wellness are we."  ~Author unknown, as quoted in Mimi Guarneri, The Heart Speaks: A Cardiologist Reveals the Secret Language of Healing

"Illness is the most heeded of doctors: to goodness and wisdom we only make promises; pain we obey." ~Marcel Proust

"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity."  ~World Health Organization, 1948

"Diseases of the soul are more dangerous and more numerous than those of the body."  ~Cicero

"An imaginary ailment is worse than a disease."  ~Yiddish Proverb

"Every man's disease is his personal property."  ~Alonzo Clark

"When an illness knocks you on your ass, you should stay and relax for a while before trying to get back up."  ~Terri Guillemets 

"The most important thing in illness is never to lose heart."  ~Nikolai Lenin




Tuesday, September 07, 2010

Fashion Show Interview

I'm about to be interviewed for the program blurb they will include about me as one of models for the MS Society Fashion Plates Fashion Show. Should I think of myself as a beauty pageant contestant and ramble on about wanting world peace?  Or maybe I can pull a Sarah Palin and use it as an opportunity to gather printed evidence of my lack of geographic knowledge? Actually, I'm just hoping I can stay awake. I'm a bit wiped out. It's not MS fatigue or anything but the day after a late to bed night and Day Two of the diminished prednisone dose. So, I'm going to just try not to yawn and hope that I form complete sentences.

Wednesday, September 01, 2010

Happy Anniversary MS

I waited until the end of the day to wish my MS a Happy Anniversary. I didn't want to spend the whole day partying with my Mind Sparkles. And I didn't. But now, it's time to acknowledge the passage of another year and head off to bed with my daily injection of my disease-modifying drugs.

Three years ago today, I was diagnosed with Multiple Sclerosis.  I called my primary care physician with what I thought was pink eye and then, three days, a slew of expensive medical tests, and still more specialists later, and a neurologist named Kenny told me that I had Multiple Sclerosis. It was September 1, 2007 and my life was forever changed. And it continues to change with every passing year.

The first year was all about learning--what MS is and isn't, how to be a patient, how to accept the fact that I had MS, how important it is for me to focus on the positive and find the funny, and what kind of support I need and don't need to live with the disease. I started to learn about balance but that's been an ongoing lesson. I should have my PhD in balance by the time all is said and done.

In my second year with MS, I learned how to question my treatment and advocate for myself with people in the medical profession. I also learned that I could pick the people on my medical team and, since it's my disease, I'm kind of the captain of the team and get to pick other members. I also learned that, just because I didn't let my diagnosis change my vision of myself as vibrant, strong, smart, and able to wish and dream just as big as I ever did, doesn't mean that everyone sees me that way. I also learned to surround myself with people who share my vision of myself as Julie who has MS and not MS that has Julie.

In the third year, I learned more about acceptance and letting go. I have no control over the future so why stress about all the possibilities and ruin right now. I also learned how important it is to take care of myself...and not just because of the MS. Even WITHOUT a neurological disease, our bodies are fragile and need us to treat them well with rest, movement, our thoughts and attitudes, and healthy nutrition. Pleasure is awesome and certainly has its place but the quieter, sustained satisfaction I get from self love activities without an instant payoff is pretty damn awesome. Delayed gratification is not as boring as I thought it was.

As I begin my fourth year with MS, I'm imagining what this year will bring. I'm guessing that I will see more evidence of how focusing on helping others is the best medicine for combatting self-centeredness and self pity. I'm trusting that I will have many opportunities to reinforce the lessons I've learned about balance and how important it is to live healthily, have fun, be responsible, and most of all, find joy in as many moments as possible. And where there is no joy, find truth and the ability to express it authentically. I'm also really, really hoping that I commit to the tedious process of editing my book, finalizing a proposal, and shopping it around to agents and publishers.

So, Happy Birthday MS. You are alive and well but I will outlive you. :-)

Tuesday, August 17, 2010

Finding the Funny in Fear

I don't generally let fear rule my life. I've noticed some free-floating anxiety popping up lately. I'm venting it here in an attempt to flush the fears out of the darkness of my mind where they are in danger of festering and growing like a bad mold. So here they are, random, crazy projections and imaginings in no particular order:
  • My neurologist's office has canceled and rescheduled my appointment to discuss my latest MRI results two times already and now I'm not seeing him until October. What if my MS lesions have multiplied and/or grown in size and activity and the delay means that I do not start on a different/better treatment right away? What if the oral meds are not ready an/or the best fit for me and I have to switch to a med administered by intramuscular injection? What if we agree that it's time for Tysabri and I am one of the 1 in whatever who gets a fatal brain infection?
  • My GI doc and I believe that I am well enough to taper off the steroids used to treat my acute exacerbation of Ulcerative Colitis. I'm only doing it .5 mg. per week so it will take a little while. This is a good thing. I know it is. In passing, during our appointment yesterday, the doc mentioned that some people get depressed when they come off Prednisone because they liked the energy boost that the roids gave them. What if I lose the motivation that I've had since I've felt better? What if I start oversleeping every day? What if my feeling better is just a pharmacological side effect and not a true sign that my UC is in remission and that I'm doing such a good job taking care of myself? What if the really horrific symptoms come back? What if I get depressed but don't really recognize it as such until I am nutty and negative and unproductive?
  • What if I never, ever get around to editing my book and finding an agent and publisher and I die without ever publishing my book or even really trying? Will I be on my deathbed, watching my 65 cats circling my bony body and think, "Shit! I was supposed to be on Oprah and pick the actor who plays me in the movie version of Maybe I'm Just Lazy! Now I won't even get a mention on E! Entertainment's Where Are They Now? and people will think my children and grandchildren are lying when they tell people that their mother/grandmother wrote a book."
  • What if my eyesight continues to deteriorate and none of my friends tell me that I have visible facial hair and that I seem to have forgotten where the outline of my lips are located when applying lipstick?
  • What if this post inspires a whole bunch of unsolicited advice and platitudes about staying in the day, focusing on the positive, etc, etc. and the remnants of my roid rage result in me telling people what to do with their guidance, alienating me from everyone who cares about me and hastening my progression to living a pitiable life as a lonely cat lady with no social skills to get or keep friends?
That was fun. I feel better.

Thursday, August 05, 2010


Today was my bi-annual MRI series. As per usual, they took images of my brain, thoracic spine, and cervical spine--with and without IV contrast.  What was atypical, though, was the overall experience.  It really wasn't an old boss of mine used to say when she gave feedback on designs (much to the chagrin of the graphic artist and everyone else in earshot), "I didn't hate it!"

I went to a new (to me) MRI imaging center with nice techs and nurses, awesome headphones (with a bizarre but entertaining mix of Muzak), and I was out of there in an hour and a half. I also did self Reiki throughout the scan which helped me breathe steady and relax. Not too shabby.

In a couple weeks, I have an appointment with my neurologist who will read the MRIs and let me know how my MS lesions are doing. If there are more lesions or they are active, it means I'll probably be rethinking the Copaxone. If  there is no change, I'll probably keep on keeping on with the daily injections for another 6 months.

I'm feeling really grateful. My UC has improved dramatically, my MS is really not bothering me in the least little bit these days, I'm incredibly productive while working at home, I'm really enjoying cooking in general and, specifically, creating my delicious Healthy Soup Creations as a way to reintroduce veggies into my diet, and I have amazing energy (that may or may not be just a side effect of the UC steroid meds...but I'm ok with that).

Thursday, July 01, 2010

Random and Recent MS News

Since my UC is feeling a lot better and I have yet to start that blog ( was taken), I thought I would touch base with some MS news and information I've come across recently. I hope everyone is well and enjoying the start of summer.

Friday, June 18, 2010

MS Has Got Nothing on UC!

If MS and UC (Ulcerative Colitis) were to get in a fight, UC would kick MS's ass...hands down. At least, that's the case in my world. The problem is, they aren't fighting each other. UC is fighting me and, for the last couple of weeks, it's been beating me up something terrible.

Thankfully, MS has been completely invisible. Maybe it's hiding in the corner reading a book like a good little chronic illness.

This isn't the place to bitch and moan about my UC, especially, when some of you are having your asses kicked by MS, but I just wanted to post a brief update on what's going on with me since I've been so silent for a while. Here are the highlights of my last three weeks--sans all the gross details:
  • I started having a UC flare a few weeks ago but had no GI doc to call because I am a non-compliant patient. Basically, because I've been flare free for years now, I ignore the fact that I have UC. I was diagnosed in 1994 and have never had symptoms as severe as what I'm dealing with lately. At times, I've been on GI meds and I've had a lot of luck in the past with acupuncture and Chinese herbs, but for the last several years, I've done squat.
  • After a week of symptoms, I sucked it up and called my primary care physician to ask for a referral to a gastroenterologist, explaining that I no longer had a connection to a GI doc and my insurance has changed a few times since then anyway. I saw the new GI doc who put me on meds that I've had success with in the past and scheduled a colonoscopy for next month. I managed to feign surprise that it has been more than 8 years since my last one. UC patients are supposed to have a colonoscopy every year.
  • Symptoms continued and worsened and the GI doc switched me to another med. Then, I got dehydrated. Then, I spent about 7 hours in the ER on Wednesday night getting IV fluids.
  • Tomorrow, I have to have more lab tests to rule out infectious diseases and, Monday, if things haven't improved, I'll be switching to the next phase of meds.
  • And so it goes.
So, forgive me if MS is not at the forefront of my mind these days. I'm thinking of starting a blog about the UC but, for obvious reasons, it will not be public. MS is so much cooler than an inflammatory bowel disease, don't you think?

Tuesday, June 08, 2010

An Injection Haiku

Belly, butt, or thigh?
Then heat, needle, ice, and bed.
Shots sure beat relapse.

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.

Friday, April 30, 2010

Friday Fun

It's Friday night and I'm thinking about fun. I need fun in my life. If I get too bored I get very, very cranky.

"If you obey all the rules, you miss all the fun." ~Katherine Hepburn

I try to find fun in my everyday life...even when I'm not breaking the rules. The kids and I dance in the kitchen sometimes while we clean up after dinner. We occasionally stomp in puddles and almost always blow dandelion seeds on our walks home from school. I help liven up every work conference call with funny stories and I'm kind of known for my infectious (and loud) laugh in meetings. I joke around with my friends in person and we send each other hilarious and rude videos on Facebook. (If only I had the nerve to post some of the best ones here....! If you like offensive, risque humor, go to and you'll get your fill). I also watch some pretty entertaining TV shows and read really great books to myself and to the kids.

I'm headed into a kid weekend. And it's broke weekend, too. I'm not writing that to inspire pity. I know that we'll find free, fun things to do. We'll probably go on a bike ride, there's church on Sunday (which is actually way more fun than it sounds since I go to a pretty cool church), we'll probably go to the library, and I might do some gardening.We may also do some artwork outside in the yard and I'm guessing we'll  watch a movie and have microwave popcorn tomorrow night.

I mean no disrespect to my children, but sometimes I need grownup fun too. Not the kind that needs to be delivered in a plain brown wrapper or won't make it through internet security filters, but the kind that is for me alone...or me with other grownups. Maybe it's because I'm a single parent and so much of my free time is spent with kids or centered around the little freeloaders that keep me from going out clubbing every night. I jest...mostly.

I don't want to go clubbing every night but sometimes I need loud, live music...or dancing...or noisy crowds...or new places to explore...or seeing a cool performance...or hearing a funny/smart/thoughtful reading...or seeing a movie that's not animated in the actual movie theatre...or meeting new people...or learning something new. no particular order here's a random list of things I think are fun and want to do...or do again...or do more often. This list is by no means exhaustive or complete. It's just a beginning...
  • Dancing to live music or a really good Top 40 D.J. Do they still have clubs that play techno?
  • Hiking
  • Dance Lessons (Salsa or African dance maybe?)
  • Practicing my Spanish
  • Going to a drum circle 
  • Cross country skiing
  • Taking a train to New York City for the weekend
  • Getting more stamps in my passport
  • Seeing a Counting Crows concert from the front row
  • Writing in an outdoor cafe while I sip really good coffee
  • Going on a date
  • Trying a new restaurant with a friend (or the aforementioned date).
  • Seeing a side-splitting movie or comedy show and laughing until I snort and almost (but not quite) pee my pants.
  • Re-learning how to read music and taking flute lessons.
  • Going on a long bike ride with beautiful scenery and low sloping hills.
  • Power walking near the beach with great music in my earbuds.
  • Perusing a museum or art gallery.
  • Riding on the back of a motorcycle with my arms around the driver's waist.
  • Reading on the beach.
  • Skydiving again. 
     What's on your fun list?

                        "It is a happy talent to know how to play." ~Ralph Waldo Emerson

    Monday, April 26, 2010

    Humble Pie is Hard to Swallow but Very Nutritious

    I am one of five contributors to the HowIFightMS blog. I was thrilled to learn that the site was nominated for a Webby award in the Online Film and Video Reality category. If you'd like to vote for us, go here.

    And then I saw the beautifully produced submission video. OMG!

    Let me just say, that I believe that each of us has our own personal Higher it stands to reason, I guess, that mine would have a really twisted sense of humor...kind of like mine. The video essay they chose to use for my clip? It was one line from one video I  recorded about how some people with MS have incontinence issues and my idea for Depends Thongs. For the record, I do NOT have bladder control issues but it's a pretty funny idea for an essay, right? The line they included was the first line I spoke where I was trying to sound  like a June Allison Depends commercial. Out of context, it sounds like I'm confessing  that I, too, have bladder control problems.

    I think the timing of this video submission is hysterically humbling. Two short days ago, I was feeling diseased and defective for having MS and wrote about it here in yesterday's post. Then today, I find out there is a very public perception that I regularly and involuntarily pee my pants. The Universe is a riot sometimes. But you know what? It kind of made me  feel better! It was so insanely absurd that I had to laugh. I am who I am and part of me--the central nervous system part--has Multiple Sclerosis. And all of me chooses to find the humor in that fact. If that is unattractive to others, oh well.

    Sunday, April 25, 2010

    MS Reminder

    Sometimes, I can almost forget that I have MS, especially when I'm feeling great. I have optic nerve damage and other vision issues, but I have no other symptoms in my daily life. Every day, when I inject myself with Copaxone, I get a mini reminder. Since I give myself the shot just before bed, it's kind of a fleeting awareness and I usually forget all about it by morning. And, unlike when I was first diagnosed, MS is not my first waking thought...thank God.

    Of course, I remember when I write in this blog or for I remember when I read someone else's MS blog. I remember when I read that an MS Facebook friend isn't feeling well. But during those times, the realization is sort of like, "Oh ya. I have MS." It's not bad. It just is. I think that's because I truly believe that I am not going to die of MS, die disabled, or even die with MS. I believe there is going to be a cure in my lifetime. So, ya, I have MS like how someone has diabetes or asthma. It's there and I have to manage it, but it doesn't define me. Most of the time, I feel like I am incredibly fortunate.

    The yucky reminders are the ones that come when someone finds out I have MS and they seem to see me differently.  When it's a man I find attractive, it kind of sucks. Especially if I felt strong, sexy, and intelligent in their eyes before. All of a sudden, the person mentions my MS without me mentioning it first (I am kind of all over the place on social networks, etc. so I shouldn't really be surprised) and BOOM. Suddenly, I see myself how they see me...or how I fear that they see me. I feel defective and damaged and just not good enough. It sucks.

    Some guys don't like feminists. I am one so they may not like me. But that feels different. I don't really want to hang out with someone who doesn't respect my core beliefs. It's not really a rejection when you don't care for the person very much in the first place.

    Some guys may just not find me physically attractive.Maybe they like blonds or skinny women. I'm brunette and, while I'm not fat, I'm not skinny either. I suppose if I wanted to kill myself in the gym and cut my calories in half, I might be able to get skinny and I could certainly dye my hair, but I don't want to. Most days, I like the way I look and feel in my body. So that's different, too. I don't find every person attractive and I get that not everyone is going to find me attractive.  Some people like Fettucine Alfredo, some people like Linguine Marinara. One isn't bad and the other good. It's just a matter of taste.

    But my MS is different. It just is. No matter what I eat, wear, or think, it will not go away. And, even though I mean it when I say that it's a blessing in my life, it isn't exactly something that I sought out or put on my Christmas list. I've worked pretty hard to shift my perspective to see it as a blessing and I work pretty hard to keep it from shifting back.

    Today, I am working overtime. I understand that MS is the kind of thing  that brings up lots of misconceptions for people. They hear MS and maybe they think of the one person they know with the disease who is in a wheelchair. No matter what I do or say, some people will view me as sick, disabled, or just different. And, if you don't really know the person very well and they don't voice these thoughts, you just see the reflection of yourself in their eyes and there really isn't space to say anything at all. And that sucks.

    Maybe I'm wrong. Maybe it's not the MS. Maybe I'm using MS as a cop out because I don't want to accept that the person I like doesn't like me back...or least not in the way I want him to. He doesn't LIKE me, like me, as my daughter says. Maybe I'm Vegetarian Lo Mein and he prefers General Gaos Chicken. Maybe he doesn't think I'm funny or find my laugh annoying. Maybe my legs are too heavy or he's the kind of boy who doesn't make passes at girls who wear glasses. But you know what? Because I have MS, the doubt is there. And it sucks.

    And, because I'm me, I sometimes turn that kind of crap inward. All day today, I've been asking my higher power to help me not beat up on myself, woulda/shoulda/coulda myself and to let go of my unrequited crush and point that energy in a positive direction. I'm doing the things that make me feel good about me: church, music, friends, reading, and writing. I need to trust the Universe that I will be taken care of no matter what and that the right people will be put in my life at the right time for the right reasons. I also have to remember that it's a good thing that every good looking guy doesn't want me because I'd be exhausted! 

    I have a friend who often reminds me that I am perfectly worthy. It's just all my fears and misconceptions that make me think I'm not. In the words of Stuart Smalley, my favorite unlicensed therapist, I'm good enough, I'm smart enough. And, Gosh Darnit...people like me.

    Sunday, April 11, 2010

    A Spectacular Sunday

    Here are the highlights of my amazing day today:
    • Jesus This and Jesus That. It was Union Sunday today. Once a year, my Unitarian Universalist, minister, my fellow congregants and I cross the green to go to the Congregational Church that split with our church a couple hundred years ago. They were very nice people but it confirmed for me that I the only possible organized religion I could be a part of is one without a unilateral creed.
    • Sunshine Day. The weather was glorious today. I spent the afternoon hanging out in the yard with the kids, my neighbor, and their new puppy.
    • Bombay Bonding.  I went out for Indian food with Diane the Librarian and two of her friends before the show tonight. We ate garlic non, lamb curry, rice, a tandori seafood dish, a yummy spicy vegaetarian dish and more. Best of all though, we played a new (to me) word game that I will be playing again soon, I hope. I love being with smart women who appreciate my not-so-hidden inner geek.
    • Freaky Motha Fucka. I saw David Sedaris read at Symphony Hall tonight. He told a wet-your-pants funny story that featured a man at an airport wearing a T-shirt with that lovely tagline. I was able to meet him after the reading and have him sign my book with that same memorable phrase. Best of all, though, was when I called my babysitter Ashley from the line and then asked Mr. Sedaris to say hello to her. Here's the conversation:
      •  Me - My babysitter loves you but couldn't come see you tonight since she had to watch my children. Will you say hello to her?
      • David - I won't hold the phone...
      • Me - That's ok. Her name is Ashley. (I hold the phone up to him as he is signing my book.)
      • David - Ashley? Is that the one you told me about who has a drug problem.
      • Me - No, this is the one who is a crack whore on the weekends.
      • David - Oh. She's the one who gives $3 blow jobs...?
      • Me - Yes, that's the one.
      • David - Great and you let her watch your children.
    Unlike my meeting with Anne Lamott earlier this week, I think this interaction was at least memorable.  

      Saturday, April 10, 2010

      Blind Fear

      My vision is blurry today. Actually, I think it's been getting blurrier all week. I have a pretty new glasses prescription so I don't think it's that. And my glasses are clean--or should be since I've polished them with the special cloth multiple times a day this week.

      Because Optic Neuritis with vision loss was my presenting MS symptom (and is still the most troublesome and consistent evidence of the disease in my life), I'm guessing the blurriness is my MS reminding me of its presence.  I'm feeling fine otherwise so I wouldn't think it's a relapse. Still, I will call the neurologist on Monday if it isn't getting any better. Perhaps it's the fact that I stayed up kind of late this week or all the sugar I ate on Easter after being sugar free for several weeks. It would be so much easier to blame my diet...or myself--than to live with the insecurity of an unpredictable illness.

      Blindness scares me. I had a blind grandmother who lost her sight because of a disease that now has a cure--Van something or other. Anyway, my Dad told me that she lost her vision so gradually that she , was, at first, unaware when she went totally blind. When I was a child, she sent my parents letters that she typed on her typewriter. Sometimes her hands were on the wrong keys and I used to like to look at a keyboard and try to decipher what she meant to write.

      When I was in college, I worked for about a year as a reader for a blind attorney. It was the least favorite of three jobs that I had at that time. She was a very, very angry woman. In public, she walked with a cane with a red tip. She told me that when people would approach her at crosswalks and take her arm to help her across the street, she would hit them with her cane and tell them that she learned to cross the street in Kindergarten. She made me read her personal ads from The Phoenix and met several men without telling them ahead of time that she was blind. She said that she didn't see it as a defining characteristic. Apparently the men did. More than one man left the meeting spot when the only woman he saw sitting alone was a blind woman.

      I saw a blind woman at a meeting earlier this week and I avoided her (which is actually pretty easy to do). When she went into the bathroom, I didn't follow her in even though I had to go, because I didn't want to talk to her.  Irrational, I know, but fear often is.  When I was first diagnosed, my minister told me that a woman at church also had MS. She's in a wheelchair.  It took me over a year to introduce myself to her although I saw her most Sundays. I know paralysis isn't contagious but I didn't want to think about MS taking away my ability to walk.

      I don't want to think about MS taking anything from me. I like being the funny one with MS. I like being the one who says that MS is a gift and really mean it. I like being able to see.

      I know that blindness is a very remote possibility but it scares me all the same. Because optimism and the ability to make lemonade out of lemons is now my default, I know I would eventually get to a good place with it, but it would be a difficult path.

      I really like being able to see.

      I like seeing my children wave and mouth "Hi, Mommy" as they recognize me in the audience of a performance at school. I already can't see that if I don't get there early enough to get a seat in one of the front rows.

      I like noticing a handsome man smiling at me from across the room. I've noticed that he has to be pretty close for me to be sure he's smiling at me...or even that he's a man.

      I like reading the menu all by myself on the wall at Starbucks and not asking my friend to read it for me as I did tonight and then resisting the urge to tell the barrista that I am not illiterate.

      I like recognizing my friends in a crowd. I like seeing the restroom sign when I get to the area where a store clerk assures me that it's located. I like reading books. I like watching television and movies and plays.

      When I can't see something or someone very well, it scares me. A lot. Sometimes I get pretty bitchy about it. Like when the after-school counselors at the kids' school gestures that the kids are "over there" and I'm not sure where "there" is as I desperately try to remember what color shirts they wore to school that day so I can pick them out of the visual mess before me. That's what happened when I picked them up yesterday. I ended up screaming at them both for not being where they were supposed to be and all ready to go home. I later apologized and explained that I was scared and shouldn't have taken it out on them.

      I think being blind would require a trust level I just don't have. It would also require that I ask people for help way more often than I already do--and I already do it way more often than I used to.

      But the fact is, I am not blind today. I have MS. I have blurry vision and I am OK. And tomorrow, if it's blurrier, I will still be OK. The rub is remembering that.

      Thursday, April 08, 2010

      Inspired by Anne Lamott

      My friend Diane sent me an announcement last week about a reading at the Coolidge Corner Theatre with Anne Lamott, my absolute favorite author. She is my hero and my a writer, a woman, a mother, and a spiritual person. I used to say that her book, Bird by Bird: Some Instructions on Writing and Life, is what made me be a writer but I now realize that it inspired me to release the writer that was in there all along.

      When I was diagnosed with MS and started writing this book, my goal was (and still is) to create something raw, truthful, authentic, and funny. I would love to write the living with MS equivalent to lher book, Operating Instructions: A Journal of My Son's First Year. I buy the book for all my friends that have babies. It's filled with wisdom and humor and, most importantly of all, it validates the dark, ugly real stuff that we think we aren't supposed to feel as mothers. Usually my friends send me perfunctory thank-you notes while they are still pregnant, but then call me in a few months to really thank me.

      When I called Brookline Booksmith to inquire about tickets to tonight's reading, I was told that they were all sold out. The person I spoke with suggested that I arrive early to wait for possible stand-by seats. I was also told that she would be signing books at the bookstore across from the theatre right after the reading. I resigned myself to the fact that I may not be able to hear the reading but that I would get to buy her new novel, Imperfect Birds, and have her sign it.

      So, I went on faith. I was the first person in the stand-by line but it wasn't long before I was joined by another woman who had driven all the way down from Vermont in the hopes of getting a ticket. A couple minutes later, an employee of the bookstore come up and just handed us tickets!  They were general admission tickets so I figured I would need to sit near the back. I was still ok with that since I was so grateful just to be in the theatre. The doors open and in we went. Because I was alone, I found a single seat in the second row. I was absolutely giddy waiting for her to come out and read.

      She did not disappoint. She told stories, read from the first chapter of the new book which is wonderful so far, and answered questions. I asked a question. A pretty dumb one, actually about how being a grandmother was different for her from being a mother (DUH!), but I'm ok with that, too. Earlier in the day, I mentioned to my friend Christina that I wanted to think of something really witty to say to impress Anne Lamott. Christina had the perfect answer.  "Don't worry about it. It's not like there's anything  you can say that will make her be your best friend." Kind of put it in perspective.

      After the reading, I went across the street to Brookline Booksmith, bought the book, and waited in line for her to sign it. When I got up to the table where she sad, I did not ask her how she felt about her "aunties" these days (that would have been a good question); I did not tell her that she inspired me or that she was my hero, mentor, etc. I told her that I enjoyed the reading and couldn't wait to start the book on my train ride home. And I did. And I'm ok with that, too.

      Thanks, Anne, for inspiring me to embrace my imperfect self. And I know that if you really knew me, you'd love being my friend.

      Monday, March 29, 2010

      "Suzy's Cells are Better Than My Cells! No Fair!"

      According to this CNN Medical Blog Post (which, inexplicably, is credited to the very famous Dr. Sanjay Gupta but is authored by a producer), a new study has found that there are two kinds of MS:
      1. One type that is caused by gamma-interferon-secreting T cells
      2. Another type caused by IL-17-secreting T cells
      The study Dr. Gupta's ghost writer/colleague is writing about is from the Stanford University School of Medicine. Researchers examined the effectiveness of a beta-interferon treatment regime. Apparently, the two types of MS respond to the treatment differently in both mice and humans. (How did they give MS to the mice, I wonder? Or is that a stupid question?)  It stands to reason that, if you are undergoing (or considering) this kind of treatment, doctors should know what kind of MS you have so you aren't doing self injections with just for fun with no hope of slowing the disease. Unfortunately, they have yet to develop a simple blood test to determine which type each of us has, but the National MS Society is excited about the possibilities that this study presents.

      Nature Medicine produced an incredibly boring video where the Stanford University doctor in charge of the study describes the research results in incredibly boring detail:

      But what about the rest of us who are getting different kinds of treatments? Not to sound completely self involved but, does this new information mean anything for MSers who are taking something other than beta-interferon? Does anyone know of similar studies that compare cellular differences between patients taking other therapies? Or, are neurologists just rolling the dice when they prescribe drugs for us, hopefully not taking into consideration the really posh pharmaceutical company lunches and the hefty speaking fees?

      What do you think?

      Friday, March 26, 2010

      Hit Me With Your Best Shot!

      I've now been on daily injections of Copaxone for two weeks and I've figured out how not to give myself painful bruises.
      1. Pick an injection site you haven't used in a week (e.g., back of arm, thigh, butt, or belly).
      2. Place a warm pack on the injection site for about a minute.  
      3. Swab with alcohol and administer the shot. 
      4. Apply an ice pack on the injection site for about 5 minutes.
       Voila! No pain and no bruise. This is huge for a wimpy, vain woman like myself who doesn't want to look like a domestic violence victim when wearing a bathing suit in Myrtle Beach next month.

      Thanks for letting me share.

      Thursday, March 25, 2010

      Another Cure!

      I had a lovely phone conversation with my cousin today. I love my cousin Karen. She is only a year younger than me and our mothers are cousins and pretty close. Although we grew up near each other some of the time when we were kids, we weren't very close until we reached adulthood and both lived with my grandfather in Lake Tahoe for a summer. We had a blast and since then we've faded in and out of each other's lives but always fall back into our comfortable relationship when we come together again. She's now living on the Cape and the kids and I are going down to spend Easter with her and her family. I can't wait.

      Karen is not someone who pities me, ever, which I really, really appreciate. She did, however, tell me today that her husband had found and saved an article about a cure for MS and she wanted me to call him right away to have him give me all the details.

      Karen is a very bright woman. She is a talented painter, a great mom, and has business savvy, too, having partnered with her husband to run a successful restaurant in Hawaii and several World's Fair concession operations around the world.

      Does she really think that there has been a cure for MS that has come in "under the wire" and that I would not have heard anything about it if her husband did not happen upon this article?

      I know...I'm being harsh and probably less than grateful for Karen's obvious interest in my well-being. But I wonder: Is it just me? Does anyone else get a little edgy when well-meaning friends and family pass along "cures" and new treatments? Are any of my fellow MSers not regularly reading the news and various MS publications and websites in the hopes of hearing promising research results? If we see a neurologist at an MS Center or other research hospital, don't we read all the magazines and flyers in their waiting rooms? For those of us who are fortunate enough to have health insurance, don't we go to those offices every six months in the hopes of hearing the latest news and information about how to treat and even cure our MS?  How many of us particuapting in National MS Society events to raise money to find a cure and then we get on their mailing lists to read still more research results?

      Is it just me?