Friday, July 9, 2010

Recognize the changing seasons of my journey through MS and CCSVI

Many years ago I was overweight, not a little chunky or heavy set. I was fat! There were six of us Ruebenesque beauties who got together to talk about the latest diets, the Roman's catalog for larger women, and 'skinny chicks'. Back then I had a sense of humor. I made up some fabulous fat jokes to brighten our little gatherings. There was an unwritten rule that anyone under 200 pounds need not apply for membership. Because I had Type II diabetes, the time came for serious reflection on my weight problem. My endocrinologist told my husband that if he wanted me to be alive in five years, the weight had to go. That sobered me and we both knew the pounds had to go.

Within a year, I was down to around 160 pounds. My girlfriends from my "Lovely Ladies club" supported me all the way. In time,  I began to notice that they weren't laughing at my jokes anymore. Invitations to luncheon dates began to come further and further apart. One day we were sitting at McDonald's, me with a diet soda, them with milkshakes.(Frothy, creamy ,yummy, mouthwatering chocolate milkshakes!)  A couple of teen-aged girls walked by in their Daisy Dukes with Walkman’s hanging out of their pockets. I wasn't sure where they found room to shove them in, but girls that age are very ingenious when it comes to making a fashion statement. One of them looked over at us in our oversized Tee shirts and said, "Look at the fatties sucking up that sugar fix!" At first I was too shocked to react. Grace, the target of the snarky remark started to blow her nose to cover the tears welling up in her eyes. Without thinking I said, "Shake it off Gracie. They’re just a couple of 'skinny chicks' trying to yank our chains!" she gave me a bitter look and replied, "They weren't talking about you, Linda, you're one of 'them'!" It was an awkward moment and the end of a chapter in my life. We stayed in contact, but we all knew I didn't belong there anymore. I didn't have MS back then, but not for long.

For several years after I was diagnosed with Multiple Sclerosis, I lived day to day in denial of the truth. If I didn't think about MS,I didn't have to deal with it. After all, didn't I beat the odds with diabetes and weight? This would all blow over and I would be just like everybody else. I got caught up in trying new diets, treatments and therapy. It gave me a focus for my energy. You know the rest of the story. My symptoms progressed and I had to fight this disease up close and personal.

I began to cultivate new friendships and alliances. It was surprising how many of us there were! Each person seemed to have a very individualized relationship with MS. The Internet became my new best friend. I could research treatments and find buddies in the process. This could all be godsend! As much as my family loved me, they didn't understand what I was going through. I grazed around the web until I found the perfect social match for me. "Patients Like Me", the name was perfect! These people became part of my family. We laughed and cried together, supported and argued and debated.  It was like a real life dysfunctional family. There was even one time they literally saved my life. My husband, Rick, was relieved that I needn’t burden him with every detail of my misery. He knew I was getting the help I needed. My grown children were impressed that I found a new compass for my MS journey. I have written a long story about internet social networking and the impact it has on society at large. It’s not a scientific study, just a personal observation.

When stories about a new cure for MS began to surface, I didn’t comment about it online because I didn’t want to make any observations until I researched more. I was able to find my own team for the testing and procedure and didn’t tell anyone on PLM because I didn’t want to get hopes up if it failed for me. Almost everyone has been supportive and happy for me. People still have questions and I still have opinions.

As helpful as it has been, it was never meant to handle the onslaught of information and chaos that Dr. Zamboli’s discovery would cause. All of us became frustrated. For those of us trying to post information, it was a logistical nightmare. Members not wanting to be involved have begun to tire of the many threads on this particular topic. The hardest thing for me to deal with has been the inability of providing locations and doctors’ names. Everyone deserves the opportunity to be liberated if they so choose. There shouldn’t be special treatment for just a few fortunate enough to have more options to make better choices. There are very few of us who have had the procedure already, although many are on their way. I know six of them who prefer to keep their information private. At first I encouraged them to share their experiences, in hopes that they could provide the rest of us valuable tips and information from many sources. I always respected their decision to opt out. Now I see the wisdom in staying in the background. In an honest attempt to cut through an encyclopedia of material, I posted Dr. Elton Ambry’s paper concerning the use of disease modifying medications in treating MS. The intent was meant to soothe the fears many are having about taking a different approach in their treatment. The response was mixed, but not pretty.It was likened to “eating prime rib in front of starving people”.  

I never considered myself to be so euphoric over the success of my procedure that I would appear patronizing, show condescendence or be unfeeling. Yet here I am, back at McDonald’s making fun of the skinny chicks. Change is inevitable, albeit painful. All that we do now will soon be lost in time as trends slide in another direction. I should be content to explore the new possibilities before me. I am drawn to the options I never thought possible again. When this chapter of my life fills the measure of its creation, I will gracefully move into the next. I will fold my banner and tuck it away as I move toward the next season in my life. That time has not yet come. Until I see the awareness and relief on the faces of those still behind me, I won’t fade away. I may need to expand my horizon, but my feet remain on the ground.



Cindy said...

I love this! You are right, each person has their own unique relationship with MS. No matter how much victory we gain, there is one thing for certain, no one know what tomorrow may bring, good or bad. You have given me so much strength. I am going to talk to my doctor about CCSVI. I am scared. Scared that I won't have blocked veins, that can't be fixed, and what I live with is what I live with. You have given me courage. Your experience and that you shared it, IS the reason I am going to talk to my doctor, no turning back. Thank you for sharing your journey.

Unknown said...

Being scared is part of the process, we know how much it means. Dr. Zamboni reported 92% with MS had CCSVI. From my researching everywhere, I think that is conservative. Many who have been tested negative have retested positive later. We need better testing for everyone,sooner rather than later.Good luck!