Saturday, January 22, 2011

The Obligatory New Year's Post

First, Happy New Year. Second, since this is my first blog, I think a New Year's post is quite expected. I was planning on skipping it altogether. For though most Lyme patients' New Year posts can be found recapping the difficulties of the disease while simultaneously uncovering the small gifts we have been given through this journey, I was not ready to go there. Until now (a couple weeks after Jan 1).

Since I have been sick off and on since late 2005, and was diagnosed with Lyme in 2008, I'm kind of over hearing "this is your year, Mona. I can feel it." Yeah, I felt it at the end of 2008, 4 months into treatment. Nope...didn't feel anything at the end of 2008, oh other than the bitter cold pile of snow stuck against my back while lying flat in the snow in my parents' backyard at 3 am crying hysterically waiting for my parents to come home from a New Year's Eve party. Now that New Year's I will never forget. Those were some dark times.

2009 would be my year of FULL recovery! Oh but then December 2009 rolled around and I was back in Michigan AGAIN, though this time I had my 3rd date with my to-be-boyfriend. It was wonderful to get dressed up and go to a nice dinner but I was so ill that day I barely made it to the date in one piece, though of course I did a marvelous job hiding this. I almost vomited the fancy lamb dinner he bought me. And I had vertigo the entire night. But, I made it through without throwing up on my date or severely embarrassing myself, and at least I was not alone in my parents' yard in the snow crying! I was happy...So yes, then I heard again from my friends, "2010 is going to be your year, Mona. I know it!"

Well 2010 just passed. I will say I have come a loooong way from the girl in the snowpants in the backyard, but I wasn't 100% healthy. December 31, 2010 was just a few weeks ago and I'm still not working, exercising, or 100% Mona again. Of course I've made great progress, with PAINFUL ups and downs, plaguing me like a never-ending rollercoaster. You'd think the rollercoaster would get easier, sometimes it does, sometimes you're knocked out for 2 weeks and think your going to just wither away and die. But then you get back up again, and boom, you resume some sense of who you were before you dipped down that steep hill on the Matterhorn (you know the rollercoaster).

So now you can see why I was hesitant to say "Happy New Year, this is my year, I know it!" but you know what, I DO know it. I didn't know it January 1st but I KNOW it now, January 11, 2011. So it's my year. I feel it so strongly like I've never felt anything before. I think the word they use to describe that is HOPE or PERSEVERANCE. Together, it makes for a wonderful start to 2011.

And I can snowboard next year! Dr. G (my Lyme specialist) told me this. I had a 1 hour monthly check up with her and after our session, I ran back to knock on her office door, interrupting her sacred lunch time, and asked flat out, "Do you think I'll be able to snowboard in a year?" She answered "Yes, not this year, but next year."

"WHAT!??? Really!!??" I was so excited I couldnt stop smiling.

A sidenote: Dr. G almost NEVER gives a categorical answer - YES or NO - when you ask questions like this. When will I be able to stop treatment? When will I be better? When will I be able to go back to work? There is NEVER a definitive answer to this because there is no way of knowing; every patient is SO different. However, I usually ask, "is it possibly I can go back to working part-time in 6-9 months?" that kind of thing, and she can say, "yes it's likely." Never has she ever said flat out YES to ANY of my questions of what I could do.

(Had someone told me with certainty back in 2007 when I was mysteriously ill (before my Lyme diagnosis) that it would take FIVE years for me to be able to exercise and SNOWBOARD again (or mountain bike, surf, or rock climb for that matter), I'm pretty sure I would have run to Golden Gate Bridge and tried to jump off. The outdoors/sports is my life. But when hope keeps carrying you from year to year, 4 years have gone by and I'm still here...)

So this gave me great hope. In the end, it doesn't matter what ANYONE tells you - your doctor, your family, your friends, your healers, your acupuncturists, it only matters what YOU tell YOURSELF. And as I have learned to reweave my story and truly BELIEVE in getting better, and not characterize my identity as a "Lyme patient" though I sometimes refer to that term as I did above, I am NOT a Lyme patient. And what my friends and family and healers have taught me is that I AM not this disease. YES, I will advocate for late-stage Lyme patients forever. YES, I will educate others about it and be vigilant about it so they can prevent it. YES, I will use my law degree in a major way to advocate for adequate treatment of this disease, insurance coverage, and disability coverage. YES, I will be testifying before medical boards and Congress until things change. YES, I will take pro bono cases for sick Lyme patients (or other chronically ill people) who cannot afford legal counsel. BUT, that does NOT make me the POSTER child for the disease.

Identifying myself as the poster child for late-stage Lyme makes me feel more sick. And I find myself more and more not thinking of myself as a Lyme patient, but as MONA, real MONA, who happens to be dealing with Lyme. And that mindset (which believe me is MUCH easier to accomplish when you are feeling well and not like death) has propelled me, I believe, to new heights of health and happiness. I feel so free, amazing, I am FINALLY living on my own for the first time in 15 months... More on this in the next post...

But for now, I feel awakened, alive, blessed, as my friend Yael (and Bryan) said, "You will look back on this whole experience as a complete gift." Of course I will. I can do that already (on many days, not all)!! A blessing in the blog is aptly named about my metamorphosis, literally. The disease was just the vehicle in which my mind, body, and soul would transform...slowly into that butterfly I keep dreaming of.

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