Saturday, December 20, 2008

#$%@%! I don't curse much, but there are times, like this morning when I opened up a claims denial for MRI from the insurance company that it is more than appropriate. I am kicking myself, hard, because it is my fault that I will have to dole out $2020. I got proactive when I scheduled the MRI, but in the process didn't follow all of the appropriate steps--mainly, getting a referral from Student Health Services for the MRI. It didn't even occur to me that I would need one because I am under the care of the neurologist for the MS and I had a referral from him. Unfortunately, not good enough! I will appeal the decision, but in the meantime #$%@%! 

Sunday, December 14, 2008

I just called to say I love you

This is a love letter to you, my dear, dear "village".  I have felt your overwhelming support and it has truly made all the difference. I wanted to let you know that I have felt energized and deeply nourished by your tender, loving, care. 

  • DM who accompanied me to my spinal tap, reassured me that these procedures always go better with love, and while I laid down for the mandatory 4-hour post-procedure resting period, read to me from Sara Water's luscious lesbian love story, Tipping the Velvet.  
  • SS who came when I called and helped me figure out the next step after she found me lying on my bed, crying, unable to think clearly or stop throwing up.
  • JR, BK, MM, and SS who visited me in the hospital  and sent e-mails on my behalf       
  • K, B, and A who gave me rides to therapy and the grocery store when walking was a challenge.    
  • MD who sent me the MS Workbook, the Collection of New Yorker cartoons, listened to me as I grappled with being so sick and suggested I keep an illness journal (which helped immensely)
  • LB who listened and said, "tell me about your anger"; LB who promised to come be with me if I needed that soon or in five years  
  • SK who visited from NYC and lolled around with me for a whole weekend--eating good food, watching "candy," lazing around AND sent me a turkey hat (for T-day and funny, sweet note)
  • TP who drove out of her way and stopped by en route to Philadelphia to go out for Korean food and for breakfast, just to see me. 
  • C whom spent oodles of time with me cooking meals including Thai food, taking silly pictures of squash on our heads, and making me laugh, and sending me e-hugs. 
  • EK who organized my birthday, contacted all of my friends, and sent me luscious Zingerman scones made from cream, butter, and sugar.
  • SC who knows how much I love reading memoirs and how inspired I have always been by Natalie Goldberg and sent me an autographed copy of Goldberg's memoir writing book.  
  • KB who gave me a brochure on really neat, useful MS materials including yoga, etc. 
  • APC who embodies my own spirit for cooking and helped me cook up a post T-day storm--creamed cauliflower, pan-seared chicken with sage butter, oven-roasted potatoes dressed with lemon juice, baguettes with fresh pesto and goat cheese. 
  • SS who went with me to the follow-up appointment and heard the Dr. say, "Yes, you have MS" and went to lunch with me afterwards.  
  • S who sent me links to website like passive-agressive notes.com to make me laugh and offered to bring me soup and the entire collection of Freaks and Geeks. 
  • EK who housed and fed me while I was in Philadelphia and came with me to my 2nd opinion appointment.
  • O who gave me wonderful poetry books on the body and spent a soothing, delightful afternoon hanging out with me. 
  • SW who talks to me often, is a wonderful conversationalist, and sent me a great book on a spirited, adventurous chicken!
  • RB who sent me a fun, new food memoir.
  • P who put me into contact with a friend who has MS and is on the drug I plan to go on.  
  • To everyone who called, e-mailed, asked me how I was doing and wanted to hear about my life.
Thank you. Thank you. Thank you. I have felt blessed, fortunate, and loved by each and every one of you. 

Friday, December 12, 2008

My trip to Philadelphia was satisfying and nourishing. In a mere 48 hours, I packed it in. I saw several dear friends, I ate my favorite Thai dish, Evil Jungle Princess, and later a divinely tart raspberry sour at the Bubble House. I soaked in the noise (incessant honking, construction clatter, the hum of conversation) and the people (the rent-a-cop directing traffic, the harried waitress, the throngs of hospital workers and college students) and the sights (lunch carts, thirtieth street station, city holiday lights). In the midst of the pulsing, throbbing city, I felt like some comic or cartoon book character, sucking in the energy to renew my own strength. As I drove out of the city after my time in Philadelphia and zoomed down 76 west in a mad rush of four-lanes-in-one-direction-city-traffic, I felt renewed through connecting with the city. And, more importantly, loved and reconnected by sharing some time with my friends whom I love and don't get to see nearly often enough. 

Moreover, the visit with Dr. Wu at the MS Center, was everything I hoped it would be. In the waiting room, I swept up a gazillion MS pamphlets on Yoga, medicinal treatment, etc. Then, when I met with Dr. Wu, I was reassured by his calm, interested manner. He was a good listener, he asked lots of questions and answered all of mine; he laughed at my jokes and made his own. Most importantly, the consultation was thorough. He educated me on all of the medicines, confirmed the diagnosis, reviewed my medical history, and performed a series of neurological tests. He affirmed that I would need to go on medication, but he was more even-handed in his recommendation--suggesting that any of the medicines might make a good choice; it was up to me to decide which risks and side effects I wanted to take on. 

In terms of medication, I still haven't decided on which one I will go on. Do I want to deal with the flu-like symptoms of the interferons and potential liver damage or do I want to deal with the potential, but rare IPIR (instant post injection reaction) that feels like a heart attack?  I'm not sure. 

Yet, I feel light, less preoccupied and much more available, since I have returned. The whole process: tuning into my considerable fear, making plans A-E, doing the footwork, has been so important and crucial. Empowering


Sunday, December 7, 2008

Last night, I shoved Dave Chapelle's Block Party into my dvd player, pressed play, and laughed, vibed, and grooved for two hours straight. I felt light and light-hearted. Once again, I've proved my motto: Feeling better is just about feeling better [not necessarily about anything actually getting better]. 

When I was at my sickest in the spring--it was the silliest, most content-free media that gave me the most comfort. I've never been a Will Ferrell fan, but I laughed hysterically while watching Blades of Glory--the retro hairdos, the glam costumes, the outrageous physical comedy. I reconnected with my childhood through a link to the on-line Sesame Street video sent to me by a friend; I  watched Cookie Monster sing about the importance of eating vegetables and chuckled. I watched the skit of The Count who returns to the castle with his date. What did you do on your date, count's mother asks. "We counted!" replies the count with such disarming glee, I laughed all the way through his song about counting.  

It's true that I am best known for watching documentaries of intractable social problems, and having the audacity to consider this "a break" or "fun". Now, though, I have cued up my netflix with real fun: silly romantic comedies, muppets movies, and episodes of the office are all on cue. 

Friday, December 5, 2008

If I were to write my memoir, I would use my relationship to language as a persistent narrative thread. It's through language that I remember my experiences: The tantrum I threw when learning how to read was not instantaneous. The hilarious pencil scribblings in my first grade diary. My first words in German (I went to elementary school in Germany). More recently, my M.A. degree in poetry, my poetry manuscript, Cargo, and now earning my Ph.D.

The first inkling, though, that something might be wrong started a few years ago when I began to note that repeatedly I was having problems with language, little tiny cognitive difficulties. So mild and small and yet I noticed. It's like going into storage retrieval for a word and not being able to retrieve it or coming up with the wrong one. I keep calling an acquaintance Saul, not Sal. Recently, I meant to type vitamin C and typed Vitamin See. Small, innocuous and yet I noticed. When this first began, I remember asking myself, "Is this an early sign of dementia or alzheimers?"

In my research, I have read that cognitive problems are the first signs of MS, they often show up before anything else.

I am keeping a journal of my symptoms. Right now, they are so small, so slight it seems silly to write them down. The tingling in my feet, a very slight feeling of them being asleep. Last week when I couldn't move three of my toes? At first, I thought I was exaggerating or misunderstanding my toes, but no, the next day when they were back to normal, I knew I had not imagined this brief impairment.

I notice these small glitches and track them, so I have them on record, but then I get back to the many blessings I feel because I feel good right now and terms of organizing treatment, being able to travel for a second opinion, and all that goes with it, that is so welcome.

Thursday, December 4, 2008

Yesterday, as a treat, I bought Deborah Madison's gorgeously illustrated and delectable cookbook, Vegetable Soups. Wild Rice Chowder. Spicy Chickpea and Tomato Soup. Summer Squash in Broth with Cilantro Salsa. Oh my! Just thumbing through her book gives me satisfaction. I'm already starting an ingredient list for this weekend's soup. 

Then today, I bought a long string of white lights to hang across the built-in bookshelf in the living room, an small advent calendar, and one red candle. I looked for snowflakes to hang on the window and couldn't find any, but may make my own. 

Now this is the me, I know and love and whom it gives me comfort to come back to. The me who is creative and grounded. The me who takes joy in simple pleasures. 

For me, health is having a w-h-o-l-e  l-i-f-e. Good work, rewarding play 


Wednesday, December 3, 2008

For the last 48 hours, my head has been a swirl. All the voices of the last few weeks have converged until my head has vibrated loudly with a noisy buzz of all the well-meaning, yet overwhelming advice on alternative treatments, suggestions for holistic approaches, and rants against Western medicine and the pharmaceutical industry. I've listened and I've nodded. Where I have disagreed, I have held my tongue. Now, I need a different approach. 

I think it's hard to understand how overwhelming charting a treatment course for MS is. There is so much conflicting advice and there is tons of downright quackery. Moreover, there are seas of paperwork and multiple insurance hurdles, complex emotions, and a troublesome, complex, overburdened healthcare system full of harried healthcare workers who do not have the time to really help me navigate this illness. Add in all the random, maybe even ill-informed advice on alternative treatments, not to mention the research it takes to sort through what alternative treatments might be helpful, and what I end up with is "overwhelmed soup." 

Ooooffff

Worse, still, somehow, amongst all the "have you tried..." and "you should really...." and "I would...", I have felt--as irrational as it is--blamed for this illness. Yuck

Time to simplify. 

Today, I plan to focus first and foremost on what I can do to take care of myself right now in this moment and assume that all the complex questions about treatment will resolve themselves in time. 


My victory has been short lived. This afternoon I realized that I had confused awesomely well-qualified Grant Liu with resident Greg Wu. Both are neurologists, but Greg Wu is still in training and not the experienced expert I had been hoping for; unfortunately, Dr. Liu only sees MS patients who are having trouble with their eyes. Back to the drawing board. At least now, I know what I am looking for and can re-double my efforts to search out someone I am comfortable with. 

Monday, December 1, 2008

Jackpot. Score. I spent the morning in a whirl of phone calls. Now, I have an appointment with a neurologist at the University of Pennsylvania's Multiple Sclerosis Center in Philadelphia. He specializes in MS. He graduated from Columbia; he had a fellowship at Harvard and, bonus, he was honored in Philadelphia Magazine's May 2002, 2004, 2005, 2006, 2007, and 2008 Top Docs issue and in Best Doctors in America 2003-2004, 2005-2006, 2007-2008. Woohee! I can not overstate how relieved I am. I have found what I am looking for: experience, expertise, excellence. 

Although I have full confidence that my current neurologist has diagnosed me accurately,  I don't have full confidence in his long-term care and treatment plan. As I have listened to my fears, done some more research, and tuned into my frustrations and growing doubts about my current care, I have realized: Oh. It's not a second opinion on the diagnosis that I need, it's a second opinion on the treatment. MS is a long-haul, long-term progressive disease, and it requires a doctor and treatment plan I can have confidence in. 

Did I mention how relieved I am?

Ever since I made that appointment this morning, I have felt lifted. Yes. I feel good