MS, FRIENDSHIP AND THE TIES THAT BIND

So many faces in and out of my life

Some will last
Some will just be now and then

Life is a series of hellos and goodbyes

I'm afraid it's time for goodbye again – Billy Joel, “Say Goodbye to Hollywood”


One of the most significant aspects of coping with the effects or mere fact of multiple sclerosis in our lives is the reaction of the people when they learn we have it. The response from individuals close and far can vary widely. I’ll never forget when I was at my last job, following a day out sick as a result of a high, debilitating fever, I decided to tell my boss (the woman who hired me about six months before) that I had MS. I hoped she would be sympathetic to my situation.  Instead, she made it about herself ("How could I do this to her?") and was shocked that I hadn’t been forthcoming in the first place. Our relationship had always been turbulent, but after that incident, there is little doubt in my mind that she treated me differently, in a negative way. Unfortunately, we always have to worry about how people in all areas of our lives -- supervisors, colleagues, friends, relatives, neighbors -- will respond to discovering our "dirty little secret."


Many years ago, shortly after I was diagnosed, a friend from college with whom I had always been very close reacted to news of my illness with shock and confusion. My wife is convinced he couldn't cope with the fact of my disease. Our relationship deteriorated quickly after I told him about it. Though we'd been best friends for many years, we fell out of touch very quickly thereafter, despite his living just a few hours away. Clearly, physical distance was not why we went our separate ways, a fact that still pains me today.


I’ve been pondering the general nature of friendship as a result of recently reconnecting with another old college friend via Facebook. When we got together for lunch the other day, we picked up precisely, and reassuringly, where we had left off some 24 years ago. I was extremely grateful that my obvious disability didn't freak him out (I did prepare him on the phone, but still). Despite my general comfort living with the disease, you never know for sure when it is safe to divulge. And so much depends on who you choose to tell; from my personal experiences, some people can handle this news; others, not so much.


Those of us living with MS have to accept whether or not to share a unique, often damaging, secret with friends, family, co-workers, even if we "look so well." For many of us, it can feel as though we are, as the cliché goes, "circus clowns smiling on the outside but in tears on the inside." By letting the metaphorical cat out of the bag, our vulnerability reveals itself. We are faced with choices about who we can and cannot tell about our disease; in the process, we learn important lessons about ourselves. Still, it can also be liberating to find out who our true friends really are. And we can make new friends, too, by joining a community of MS patients either locally or via the internet. Whatever would we do without the electronic superhighway?


Enjoy the spring. Keep fighting the good fight.


All my best,


Marc
marc@empirelifecoaching.com
914.715.9496

"Say Goodbye to Hollywood"
http://www.youtube.com/watch?v=47PtUvHIQpk

VIAGRA: SECRET REVEALED

“Medicine sometimes snatches away health, sometimes gives it.”
 - Ovid 



Multiple sclerosis is the disease that keeps on taking. It takes away our mobility, our basic functions, touch, feel, bladder control, and diminished sensations.  We take medications to treat the symptoms, to prevent the progressive disease from progressing.  Sometimes, the side effects of these drugs can be more severe than the disease itself.  Oh man, when I was on steroids (prednisone, dexamethosone, oral, intravenous), it really sucked: the sleeplessness, the withdrawal, the highs, the lows, the feeling that I was being electrocuted.  We can invest so much faith in these medications, hoping upon hope that maybe, just maybe, they'll be beneficial.  I just finished a year-and-a-half tour with Tysabri.  Did it work or didn't it?  I couldn't say for sure, but my doctor was concerned about PML (the scary brain infection).  Onward ho to Rituxan.



Occasionally, we get a little something back, as evidenced by the following experience: When it comes to intimacy, the disease has caused what is, from my understanding, a not uncommon effect on my sexual function.  What is the number they name in the ad for men who live with the issue, MS or no?  20,000,000 men are using it, this little pill called Viagra.  Add this one to the long list of medicines and treatments I never expected to be using.  The affliction it treats is commonly known as ED (erectile dysfunction).  I didn't know the official name for it until I heard an ad on the radio a while back talking about a remedy for "ED."  The reason I am going public with this secret is that I recently noticed an uptick in over-all function (not just down there) whenever I use Viagra.  I even notice a little more energy the next day at the gym.



So, being the modern guy that I am, I went on the Internet and Googled "Viagra MS" to see if there is anything to my little theory and, lo-and-behold, what did I find but the results of a study on mice published last year describing the benefits of Viagra for restoring function.  Read about it here: http://www.sciencedaily.com/releases/2011/05/110519090354.htm.  Of course Stu at Stu's Views and MS News was on this one last year shortly after it was published: (http://wwwmsviewsandrelatednews.blogspot.com/2011/05/viagra-could-reduce-multiple-sclerosis.html). Beginning this week I'll be taking a generic form of Cialis, a daily pill that contains the same active ingredient (tadalafil) as Viagra to see if I can get the benefit all the time.  What this means for women with MS I am not entirely sure.  



My other little secret: I am tapering off Baclofen.  Why, you ask?  Well, I got thrown out of whack when I slept through the night.  Usually, I take a Baclofen along with Tizanidine and Clonozepam when I wake up in the middle of the night.  Instead, I took the combination when I woke up.  Five hours later I went to physical therapy and had the best session I've had in months, since last summer.  Crazy, right?  Then I remembered the reason I stopped taking Baclofen many years ago: It made my legs heavy and, thereby, more difficult to walk.  I will live with a little more spasticity if it might make it easier to walk.



Here's the thing: we're always hoping to somehow get better, even completely recover, as unlikely as the possibility can sometimes seem.  Our anxieties can interfere, too. We may be willing to try anything, hoping to improve our condition – or nothing at all, out of fear or denial.  We each have our own ways of coping.  Myself, I've always kept an open mind. Hey something's got to work, right?  And I am fortunate enough to have a doctor I can trust like a brother.  But in the end, we must be our own best advocates and remain aware and informed in order to make decisions that keep our best interests in mind.

Be well,

Marc
marc@empirelifecoaching.com