, , , , , , , , ,


John William Waterhouse: Pandora, 1896

I received an early Christmas gift on December 6, 2011. It wasn’t a gift in the traditional sense, but it is definitely one that I have yet to finish unwrapping. This gift was delivered in the form of a telephone call from my MS specialist. I had been waiting to hear from Dr. K since my early November follow up MRI. Describing this as a gift may lead you to believe that the phone call delivered some good news; a clean MRI. On the contrary, Dr. K was calling to tell me that she had just read my MRI and that I had two new spots on my brain, “They aren’t in an area of great concern, but we need to consider a new medication for you.”  She went on to recite her often repeated list of the various options and before she could continue, I asked her if it was just too soon after starting the Copaxone; maybe I would have had spots in areas that were of concern if not for the Copaxone.

I felt like a junky, defending my drug of choice. My healing euphoria was being challenged. It was the beginning of my intervention. Had I been fooled into a false sense of empowerment, while only shooting blanks? My troop of one was about to have a very serious drop in morale. I was having a hard time paying attention to Dr. K as she spoke, after all, I was in the parking lot of Walmart preparing to meet my husband to buy Christmas lights. She caught me by surprise, though I had been waiting to hear from her since the first week in November and it was now already December.

I interrupted her spiel about the medication choices, and asked her if she could just send me the information. I was sitting in my car; I didn’t even have a pen. My expectations, once again, were a little out of sync with the reality because what I thought she would send was a letter, or maybe an email, with personal and professional opinion regarding these choices.  What I really wanted to know was, if she were me, what would she choose for herself?  If I were her sister or her mother, what would she recommend. What I received instead, two days later, were three large envelopes delivered by Fed Ex, containing glossy brochures, produced by the pharmaceutical companies, touting the various drug I was to once again consider.  I also came home to a message from my insurance company’s home delivery service which was waiting to ship my Copaxone refills.  They were calling to arrange it.  I guess I needed to decide quickly. I emailed Dr. K to thank her for the advertisements; the information I could have just as easily obtained on the web; the glossy ads showing smiling paid spokes-MSers walking through wheat fields unassisted. I also needed to ask her if I should refill my medication for at least one more month while making my decision.  She quickly, immediately in fact, replied in all capital letters: DO NOT REFILL YOUR COPAXONE.  Was this really happening?  If the MRI was so dire, why did it take her a month to call me? She apologized for not calling sooner.  She didn’t know I had rescheduled the MRI because no one had sent her the results.

You may still be wondering why this disappointing phone call is being described as a gift.  Up until 3:07 pm on December 6, I had, for lack of a better phrase, been feeling pretty groovy.  I was the master of my domain.  A soldier with a perfect kill rate. I had been giving myself daily injections, not having any noticeable side effects, still not having finished informing all of my family, when just like that, I’m told it’s not working.  I was more devastated from that phone call, than I was the day I was diagnosed.  But here is the gift I began to unwrap on that day; I finally faced up to reality and I told my youngest son I have MS. I began to talk about my MS with my husband.  I felt as though I was finally shedding the last bits of denial that I had been clinging to despite the comfort it was affording.  It marked my first effort at truly seeking out alternative treatment options beyond the medication I had been banking on.  I needed to take back control and the call was a gift because it motivated me to do that.

I called my MS specialist and told her I wasn’t changing medications.  I was going to stay on the Copaxone for a while longer, and try other means of amplifying its effectiveness.  After researching my options I decided that the cons of the other medications far outweighed the pros.  Dr. K recommended Tysabri or Gilenya; she wanted to take an aggressive approach.  I couldn’t see making myself sicker to prevent that which may never come, or that which may possibly be inevitable.  It was at this time that my daughter happened to mention that she saw a YouTube video about dietary changes used in controlling the effects of MS.  I watched the Terry Wahls lecture and immediately decided to give the diet a try.  I’ve never eaten better in my life, and while it’s too soon to tell, I really hope it works.  It makes me feel very “clean” and clear headed, though it could be argued that it’s a combination of all the other changes I’ve incorporated.  I made an appointment for acupuncture and continue to go for treatments once a week.  I found a yoga class that I now participate in twice a week and I simply love it.  I began practicing Qi Gong everyday.  I started doing things specifically targeted towards a positive focus for healing.  I am not ready to throw medical science and pharmaceutical research out of the window, but there is also science behind the nutritional benefits of an Multiple Sclerosis diet.  There is science behind the benefits of Vitamin D3 supplements; I now take 4,000 IUs per day. My acupuncturist is a medical doctor and she truly believes in the merits of Chinese medicine.  I am beginning to see them as well.  The stress reduction value of yoga has long been established.  My mind became open to all these wonderful new concepts of energy healing; ironic seeing this disease is one in which your brain shrinks and mine seems to be growing.  The gift that I received with that December phone call is still being unwrapped.  I am relishing the tearing open of my gift, with the anticipation that the best is yet to come.