My Zen Den

We lay there & looked up at the night sky & she told me about stars called blue squares & red swirls & I told her I'd never heard of them. Of course not, she said, the really important stuff they never tell you. You have to imagine it on your own.

So, I'm "wistful" again.....what's new? Summer is nearing its end and I am preparing to send my daughter off to college. Although I'm not prepared to dive back in to posting again, I would like to share the continuation of my essay about my daughter and her best friend. Tomorrow, we are having a cook-out to wish good luck to both of them as they begin a new chapter of their lives. (Here's the first part of the essay......previously posted) http://www.blogit.com/Blogs/Blog.aspx/MS_Mom/508169 And, now........as they pack up and get ready to leave............ And now, another major challenge looms before them, as individuals and friends, as they each prepare to separate from one another in order to live their next great adventure. Once again, the strength of their friendship will be tested as they will be attending different colleges. Now, the monumental challenge becomes my own, as Rose’s Mother and Lindsey’s “other” Mother. The little girls that I watched grow ...

I had my first treatment with Tysabri, the newest drug on the market used to battle MS. It’s a once-a-month infusion (IV hook-up), administered in the doctor’s office. When my doctor talked to me about this new drug, he said “it will stop MS in its tracks”. However, I was still hesitant and had been vacillating for the past year as to whether I should switch from my Avonex (weekly injections) to Tysabri. I felt like “if it ain’t broken, why mess with it”. But, recently I have noticed that my feet are numb more often and there is increased spascicity in the muscles in my thighs. spasticity Tysabri was first approved in 2004 but was temporarily taken off the market in 2005 over concerns about a serious brain infection, known as progressive multifocal leukoencephalopathy (PML). It seems that three patients developed the disorder, characterized by destruction of the myelin sheath that covers nerve cells. To put this in everyday language, the brain deteriorates. There is no cure for PML, no...

The other evening, I was lying in my bed watching television, which is my normal nightly routine before I fall asleep. I usually watch the Jon Stewart Show.....or at least I begin to watch it and usually doze off before it ends. On this night, I could not fall asleep because I was hearing a noise that, at first, sounded like a motor running outside. It was driving me crazy. I got out of bed, walked around the bedroom, opened all the windows one by one......hoping that the source of the noise would become apparent. Well, it was not a car running. I remember hearing a similar noise last summer before the electrical transformer behind our house "popped", plunging most of our block into darkness. It made this "buzzing" sound that was extremely irritating........kinda made my insides "buzz" also. (Seriously, due to my MS, my "system" is somewhat sensitive to certain sounds, sensations, etc.). Well, it was not the transformer. Again, I remembered the m...

I see I have drifted away from writing about my Multiple Sclerosis here and it does not surprise me. Ever since being diagnosed in 2000, I have found myself NOT talking about it much. Originally, I thought it was because I didn’t want to be one of those people; you know the type. At the drop of a hat, they will tell you all about their skin lesions, hot flashes and itchy vulva. (Please Mom; no more…I never want to hear you use the word vulva again.) For some reason I have always been more focused on those people who really have it hard; people with illnesses that are sure to cut short their lives or those living with chronic diseases that prevent them from living a normal life. My favorite singer/songwriter Dan Fogelberg died of cancer a few weeks ago; out sailing his boat all summer and dead by Christmas. So, I say to myself; what have I got to complain about? It’s a personal philosophy for living life. One of my favorite movie quotes is “Get busy living or get busy dying” from The Sh...

Calling a "snow day" for myself. Woke up this morning at 5am, looked out the window to see everything covered in snow. So, I decided; I won't be there. I'm not going. Don't expect to see me. Count me out. Made a pot of coffee, turned the Xmas tree lights on and sat in my chair watching the day break. This is something my MS has taught me. Take more snow days.

I can't quite put my finger on it........i'm feeling more tired than usual and I'm not sure why. It's been raining here in Chicago for the better part of two days. Usually I like the rain but, right now I'm feeling pretty blue. I am longing for one of those gorgeous summer days, hanging out in the yard, floating in the pool. My husband Jeff put this unbelievable koi pond in the yard about three years ago and it has become my favorite place during the summer to read and meditate. Maybe it's just that simple. I know there is a "disorder" call SAD (seasonal something disorder) that is the result of not getting enough exposure to the sun. Who knows what the heck is going on? As I've said before, the fatigue is pretty much "always there" and, weather permitting, I would go for a long walk, listening to my music. But, that's not going to happen tonight. So, it's on to Plan B...........nice hot bath and a cigar........new episode later o...