An Awesome First Lyme Walk

Turn the Corner walk T-shirt!

Today, May 15, 2011, is the 1st Annual International Virtual Walk to Turn the Corner on Lyme! 

Thanks to all of YOU for your incredibly generous support, I raised over $1000!!!! ($1042 to be exact). This is more than four times my goal of $250! If you would still like to contribute please click here. My fundraising page will be available through mid-August. 

Me and Mom all dressed for the walk! She is at the grocery store right now raising awareness while she shops! :)

Over the last few weeks I've be uplifted by the messages from FirstGiving letting me know a donation had been made. You all overwhelmed and humbled me with your kindness, enthusiasm, support and generosity towards this cause. I want so much to send you all personal hand-written thank you notes, but I know that is just not possible right now. I hope you will accept my thanks in the form of this blog, and if you have not yet received a personal email or text from me you will. Soon!

One of my youngest supporters! :)
I woke up this morning to this photo of Lana and the message: "Good luck on your walk today, Auntie Em! We love you!!!" Lana looks a little unsure about how this shirt is impeding her ability to be mobile! Oh, how I am in love with Lanadoodles!

I remember when I first got sick and was diagnosed with Chronic Fatigue Syndrome. The CFIDS (Chronic Fatigue and Immune Deficiency Syndrome) Association of America was a small, fledgling organization fighting for awareness of an often-dismissed and little supported illness. Over the years, the CFIDS Association of America has been instrumental in changing public opinion about CFS, funding research, advocating for funding of CFS research, providing support and information to patients and doctors, raising awareness, and even calling out the NIH for misappropriation of funds designated for CFS research. It's an incredible organization that has grown tremendously over the past 13 years since I first discovered it. While CFS has a long ways to go in research and understanding, the resources, awareness, and research has grown tremendously. Patients like myself are indebted to the CFIDS Association for fighting the good fight on our behalf.


I also spent many years finding great solace in DINET (The Dysautonomia Information Network) where I found a group of supportive and wonderful people, many of whom are my close friends now. I have been in touch with some of the same women for over 10 years now. Every day, I am in touch with women I met on this forum. Together, we support one another, understand one another, make each other laugh, help each other navigate the symptoms we are experiencing, and combat the isolation and loneliness that chronic illness often brings. Many days, we may just be in touch via FB or texting, but we are always supporting one another. It was on DINET that I first met two women who led me to pursue the diagnosis of Lyme Disease. There is a lot of overlap between CFS, Dysautonomia and Lyme.

Rachel, one of my close DINET friends, all decked out in her Lyme Walk shirt. Her cutie patootie, Adelaide, wanted to be in the photo too! :) Thanks for wearing your shirt Rachel, and for using your precious energy points to take a photo! My phone just dinged with a text from you!

I share this story about the CFIDS Association of America and DINET because I now find myself living with another misunderstood and invalidated illness. I feel so strongly about supporting fledgling non-profits like Turn the Corner Foundation, CALDA (California Lyme Disease Association) and Time for Lyme who work tirelessly to raise awareness, educate, support, advocate and fund research. 

In many ways, the support I have found from all of these organizations has literally been a life-saver--emotionally and physically. My life has been greatly enriched by the personal relationships I have formed as well as by the information, awareness and research these organizations support.

Lyme disease is an urgent and growing health-care crisis. Without organizations like Turn the Corner we would not have the much-needed efforts being made to raise awareness, provide support, fund research, educate doctors, and so much more! Seriously, how did I end up with all of these little understood illnesses? Without organizations like Turn the Corner Foundation who would speak up against the IDSA and its denial that Chronic Lyme even exists? 

I'm excited to watch and support the Lyme organizations grow and bloom, as I did (and continue to) the CFIDS Association of America. I am excited to see the difference that such organizations of dedicated people will continue to make. I am excited to help turn the corner on Lyme! Thanks to all of you who are helping to pioneer these efforts to turn the corner on Lyme. Every time you make a donation, watch Under Our Skin, or talk to another person about Lyme disease you help to create the ripple that will turn the corner on Lyme. 

Blessings and thank you,

Emily

NOTE: Blogger has been having a LOT of issues lately with losing posts, retrieving them, republishing them, etc. Last night I wrote a much better post on this topic and lost it. I am trying to re-create it. :P If you are a subscriber and have been receiving old blog posts that you've already read, it is because Blogger is a bit messed up lately! Hopefully they will have things fixed SOON! :)

Happy Birthday Mom!

Mom makes a wish (or two or three?).

Happy 66th Birthday Mom! 

Birthday balloons from Jeannine.

In addition to celebrating Mother's Day over the weekend, we also celebrated Mom's birthday. Didn't Jeannine do a great job with the balloons? :) The best part was when Mom spotted Jeannine walking down the street towards our house with these HUGE balloons. At first, Mom saw the balloons and thought: "Hmmmm, someone in the neighborhood must be having a birthday." Then she realized they were moving, and that Jeannine was carrying them! :)

Jeannine and her Mama S.

Jeannine came over on Saturday evening for a wonderful dinner of fresh local asparagus, shrimp and scallops, and a wild rice salad. We had chocolate truffles from the market for dessert. After dinner we got out for a little StRoll.

Me and the birthday girl.

I was struggling a bit Saturday evening to get through the 'party', but we still had a lovely time celebrating with Jeannine (aka Mom's second daughter).

Usually, I push myself really hard to try to get gifts and cards together for Mom. This year, I used all of my energy towards time with Mom and we ended up having a lovely, low-key, low-stress, and fun weekend together. Mom is always encouraging me to let go of the gifts and cards and notes, but it somehow feels like a failure on my part not to do these things for her. It pains me to have to make the choice between energy for dinner or energy to make a card. It was really hard for me to let go of the unrealistic expectations I place on myself, but in the end we had such a great celebration that worked for both of us.

Me and my bestest friend.

After Mom turned 65, she seemed to have one medical problem after another, and this past year has been a really difficult one for mom with the heart attack, bleeding ulcer, and major pain from her stenosis. Jeannine joked that maybe her warranty had expired and perhaps she needed a new one. Our greatest hope for Mom this year is that she will have two successful spinal surgeries and ultimately better health (i.e. a renewed warranty!).

Flower planting (with help from Asher) on Mother's Day.

For Mother's Day, Mom got her favorite thing: a perfect day weather-wise. We spent the afternoon outside. Mom filled the pots with potting soil and I did the planting/design. We make a good team! As you can see from the photo, Asher didn't want to miss out on the action either. 

Checking out the fruits of my labor and enjoying the day.

Since dinner on Saturday, Mom and I have been packing in the fun before her big cervical fusion surgery on Tuesday May 17. 

Over the weekend I think I finally turned the corner post port removal (fingers crossed), and started to be able to enjoy things again. We had a birthday dinner with Jeannine, flower-planting and sitting outside on Mother's Day, a trip to the arboretum on Monday, and a trip to the Farmer's Market on Tuesday.

After a Spring filled with rainy dreary days, we are now enjoying the benefits of all of the rain: one of the most glorious Springs ever. To top it off, we have had perfect weather this week to enjoy our outings.

It has felt good to unplug a bit, spend some time with Mom, enjoy some time outside (new allergy meds from Dr. Complex seem to be making this possible!), and finally feeling like I can engage in life a bit again. 

I plan to write a blog post in the next couple of days with the details of the cervical fusion surgery and what it entails. 

Blessings,

Emily

Happy Mother's Day

Weeping Cherry tree in full bloom a couple of weeks ago in our front yard.

Mother's Day blessings to all of the wonderful and loving mothers I am blessed to know, to all of the amazing women who mother me, to all of the women who long to be mothers themselves, to all of you missing your own mother, to all of you missing a child how has passed on too soon, and most of all, Happy Mother's Day to my own mom.


I have been blessed with Abbie, aunts, friends, grandmothers, and so many beautiful women who have mothered and continue to mother me. I thank you all for this. I am wiser and more fully myself because of you. 


At the end of every day, no matter how hard the day, someone has always mothered me. I am a very, very, very lucky woman. I am also getting to watch many of my friends grow into amazing mothers themselves.


Each day, I feel brought down to my knees with gratitude and appreciation for all that my own mother does for me. My mom plays more roles than most moms do for their 35 year old daughters from chef to friend to occupational therapist. Just the other day, she bought a bunch of pansies and potting soil. She filled a large pot with the potting soil so that I could plant the pansies. While I planted the pansies, I realized that Mom had basically come up with some fun occupational and physical therapy for the day--she had gone to the store, bought the supplies, and made the activity doable for me. This may seem simple or insignificant. But such gestures, that occur day in and day out, change the course of my days, especially because they are done with such intuitiveness. Planting the pansies was my main activity for the day.


We've found a way to take an unexpected and difficult situation and love each other more deeply and more fully. She's my closest confidante, my mother, my caregiver, and my role model.


Day in and day out, intuitively, selflessly and lovingly I am nurtured, I am cared for, I am hugged, I am fed good food, I am listened to, I am encouraged, I am asked what I need, I am loved.


I love you Mom.




Blessings,


Emily

Happy 'Gotcha Day' To My Favorite Little Guy!

Kisses from my favorite little guy.

Today, May 6th, is Asher's 'Gotcha Day'. Other than a little taste of some leftover fish from dinner (which Asher LOVED!), the celebration here was low-key.


Still, the significance of the day and the joyful spirit that is Asher did not go unnoticed. 


Mom snapped this photo of me and Asher last weekend in our yard after we had been on our little picnic. I was trying to get him to pose for a photo, but he wasn't sitting still!


As you can see, he makes me smile fully and completely.  Even on the days when I don't think I have it in me to smile or laugh he finds a way to make me--by digging for just the right toy in his toy boxes, by reminding us it's time to eat darnit, by galloping around the house squeaking toys, by jumping up on 'his' ottoman/throne and sitting there as if he is king, by needing to be wherever we are at all times even if it means we trip over him, by snuggling in bed next to me snoring, by enjoying a really good scratch on the toosh, by thinking going for a ride in the car is the best things since that fish he had for a treat tonight.


  In the mornings when I am trying to wake up, Asher is usually waiting outside my door for me to get up. I say: "Good morning Sunshine!" He responds by shaking off, sitting down to scratch, looking at me, and finally jumping up on the bed to smother me with kisses. How can that not make me smile?


We have had three dogs now, all of them wonderful, but none with the super-sized personality that Asher has. 


Asher: We hope your nine years here with us bring you as much joy as you bring us. We think you are a bit dramatic when you act as if you've had a rough life!


Blessings,


Emily

Under Our Skin to Air on PBS

As of now, there really is no medicine for someone like me. The reasons why there is no medicine for Lyme disease are complicated, overly-politicized, and outrageous. For me, seeing Under Our Skin was the first time I truly understood the complexities of this illness and the powerful ways in which patients are being neglected and doctors are being kept from treating people like me. There is a reason the production company for Under Our Skin is called Open Eye Pictures. This movie will move you. 


As part of Lyme Disease Awareness Month, PBS stations across the country will be airing a shorter version of the film Under Our Skin.


Click here for a schedule and list of stations.


For those of you who haven't yet seen the film, I highly recommend watching it. The film is also available on demand from iTunes, Netflix, Comcast and many other ways. I still have copies available to lend and it is probably at your local library.


Interestingly, the decision by PBS stations to air the film has been met with resistance by the Infectious Disease Society of America (IDSA). The IDSA has been working hard to get PBS stations to pull the broadcasts, claiming the film is "dangerous for viewers" and full of "conspiracies."


So far, one Minnesota PBS station did pull the airing of the film after discussions with the IDSA. Thankfully, most stations have not changed their decision to air the film.


As stated on the Under Our Skin blog post on this topic: The Public Broadcasting Service (PBS) was created in 1967 to "provide a voice for groups in the community that may otherwise be unheard," and serve as "a forum for controversy and debate" by broadcasting programs that "help us see America whole, in all its diversity."


I am so grateful to the people of Open Eye Pictures who were willing to shed light on such a controversial subject. I'm grateful to PBS for staying true to its mission, for making this film available for viewing to so many more people, and for allowing those of us who feel unheard to be heard. 


On the subject of gratitude, THANK YOU so very much to those of you who have pledged to support me in the 1st Annual International Virtual Walk to Turn the Corner!!!! Because of your generosity I have more than doubled my fundraising goal of $250! I've been so lifted up and encouraged by your support. (Click here for my blog post on the topic and click here to go to my fundraising page.)


With efforts from so many people on so many fronts to raise awareness about Lyme disease and other tick-borne illnesses our hope is that someday soon there will be a medicine for someone like me.


Blessings,


Emily

Picnic

LOTS of dandelions.

"Make hay when the sun is shining" is definitely a favorite phrase of Mom's. When I woke up on Saturday and asked for a 'weather report', Mom said it was 'perfect' outside. 

I had just written my blog post on loss of freedom and finding ways to make choices within my constraints. On Saturday, I felt that I got to freely choose some things during the day that made me happy. I decided it was most important to enjoy the beautiful weather (of which we haven't had much!).

We quickly made some sandwiches and headed to a little park that is just five minutes away, where we had a picnic lunch and Mom pushed me for a short ride in the Rolls.

Asher was very excited about the outing too!

I think Asher can be so clown-like, so I like this photo of him with his tongue hanging out. He might not think it is the best of the photos I got that day, though.

Barn and community garden located in the park.

Lots of people were out in the community garden planting. 

Mom and I rarely take a day just to 'have fun'. (Neither of us is very good at 'fun' these days.) We spent the afternoon outside and that evening we had Thai food delivered. I took a bath and watched part of a movie. Mom pretty much never takes a night off from cooking and we rarely take a whole day to just relax. 

I did pay a price with autonomic symptoms in the afternoon, but overall the day was a happy one. I felt a lot of freedom in my choice to enjoy the beautiful day, spend time with Mom, and ditch the to-do list. We had our own little Staycation.

Blessings,

Emily

Virtual Walk to Turn the Corner on Lyme Disease

Me and Mr. Fuzz outside in the yard today.
Sadly, it is easy enough to get a tick bite in your own backyard.

Today is May 1st. May Day. The 2nd birthday of one of my favorite little boys. Time for the May flowers that come after April showers. 


Today is also the first day of Lyme Disease Awareness Month, in which I am very excited to be participating for the first time this year. I have decided to be a part of the 1st Annual International Virtual Walk to Turn the Corner on May 15th, 2011. 


Please check out my very own fundraising page to learn more about this event and to read my summary of why I am participating in it. I encourage you to visit my page even if you are not able to or are not interested in making a donation.

As much as we all love Spring, it brings with it the unwelcome presence of ticks. Throughout this month, and beyond, I hope to continue to blog more about Lyme Disease and why I hope to become more involved in speaking up about it.  (I do not have the intention of changing the focus of my blog, only to add another dimension to it over time.)

For now, please consider joining me on May 15th, 2011 by making a small donation ($5 or $10) and cheering me on with your Lime green pom poms! (I'd pick pink, but that's just not the color for Lyme Disease awareness!).


Today, Mom and I will also engage in our ritual of applying Asher's monthly dose of Frontline to keep him as safe as possible from Lyme disease and ticks. Please keep yourself and your loved ones as safe as possible from ticks, Lyme disease and other tick-borne illnesses during what is looking to be a prolific year for ticks all over the country.


Blessings and Thank you in advance for your support!


Emily