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. :-)