Book 'em, Danno

So I booked my first trip on The Ride.  They were supposed to pick me up at my office after work tomorrow, take me to the mall, and then bring me home an hour later.  But we had a pretty big snowstorm in the Boston area last night and school is canceled for a second day tomorrow which, of course, means I'm not going into the office.

I have to say, I'm kind of bummed. I haven't been to the mall on my own for more than 2 years now. I would have been racing around for an hour to find a dress for Ruby to wear to a Bat Mizvah party on Saturday, which is not exactly fun shopping, but still!  She ended up borrowing a really pretty dress today so there is no pressing need for the mall trip.  But it's booked. And I want to go. 

Also, because I was getting picked up at work, I warned my boss about it since I didn't want him to get all pitying and ruin the way we joke about my visual impairment. He teased that he was charging the camcorder so he could videotape me climbing on board for the first time.  I'm pretty sure it was an idle threat but I think it would be kind of cool to have visual documentation for the blog.

With or without video, I was really hoping to have a funny story or two to share after the big adventure on my chauffeur-driven short bus. Do I call and cancel or just rearrange and go to the mall after their dad picks them up for dinner?

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. 

Fashion Plates 2010 Fashion Show

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.

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?

Good Seats Still Available!

 

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 and 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 MSnewengland.org

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.

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.

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.

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

 

 








 

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.

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. :-)

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.

MRI Day

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 bad...or...as 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).

Random and Recent MS News

Since my UC is feeling a lot better and I have yet to start that blog (TalkingShit.com 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.

• Interesting article about MS and Depression.
• Exciting research discovery about abolishing relapses in MS.
• New treatment options for people with Primary Progressive MS.
• New University of Buffalo Trial to study CCSVI and MS.  I feel woefully ignorant about this hot MS topic but I know there is a lot of passion in the MS community about CCSVI. I am compiling my pile of research to bring to my post-MRI visit with my neurologist in the fall, including stuff about CCSVI and the new oral meds.
• Study shows processed foods may increase risk of Multiple Sclerosis causing oral and maxillofacial symptoms.
• FDA approves Novartis' MS oral drugs.
• Merck is also seeking approval to test an oral MS drug.
• And finally, my funny favorite: A new study shows that learning to juggle can help people with MS.

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?

An Injection Haiku

Belly, butt, or thigh?

Then heat, needle, ice, and bed.

Shots sure beat relapse.

 

Resting

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

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 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 Cañas 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)