August 10, 2014 – Heading home from Moscow and still fundraising!!!

The day before I left for home, I left the hospital grounds for the 2nd time with my sister and brother – in-law!   They flew back a few days before my flight to help me get home. I was not as ambulatory as many others who were able to see a lot of Moscow.  I was happy to be outside in the sunshine! This is the guarded gate to the hospital.  

The day that I left Moscow was a very sad day for me and many others.  A half hour before I left, I learned that a beloved patient and friend, Kellie van Meurs died of heart complications.  Kellie had Stiff Person Syndrome (SPS) and found out during the testing in Moscow that she also had Chronic Inflammatory Demyelinating Polyneuropathy (CIPD).  She was a strong, sweet, lovely, funny, open and brave woman who fought her disease until the very end.  She will be missed by everyone who had the pleasure of knowing her.  She was a fighter and a strong advocate for her health.  We had many talks about her family, her mom and her two aunts, her life in Australia and how difficult her life was with SPS.  Her Aunt Rosemary, who accompanied Kellie to Moscow was also a delightful and strong person that we were all so happy to meet and get to know.  I was extremely upset to have to leave everyone in Moscow who would be waking up and hearing the devastating news about Kellie.  On the flight home, I told my sister all about Kellie, her strength, determination and her smile even though she was in pain, her son and daughter, her emu from Australia and all our conversations.  She is missed by everyone who had the pleasure of knowing her.   It was very hard to leave after this awful tragedy.

On the flight home, I wore the 3M Particulate Respirator 8233, N100.  I think the N95 was recommended, but this was the one I found.  I bought it on Amazon for  $7.34  I could not believe how comfortable it was for the 11 hour flight.  I only took it off to eat and drink.  

Arriving at JFK, my husband and son were there to meet us on time : )
Look at my swollen legs : (

I had asked my son to bring a futon for me to lay flat on in the back of our car.  My legs were so swollen, I just wanted to elevate them during the 5 hour or so car ride home.  These are my loved ones watching me ‘gracefully’  enter the back of the SUV.

It was not graceful, but comical!

I was extremely comfortable for the first time since leaving Moscow!
My legs were elevated and I slept for most of the ride home : )

Arriving at the beach, I was greeted by beautiful signs made by my neighborhood kids!

and many festive balloons too!

These same kids are the ones who fundraised for two weekends while I was in Moscow.  They sold lemonade, cookies and lollipops by our walkway. They also went up to people on the beach with a huge sign.  Matt Haley, the owner of  Matt’s Fish Camp – a lovely restaurant at the end of our street – said he would match whatever the kids raised, up to $500.  The Tower Shores community was very generous and the kids raised $1000 for my benefit!

Last weekend, these 3 sweet neighbors helped my fundraising efforts again!

They were so proud of their hard work and I was so proud of them too!

They raised $96 in one day and presented it to me in their special pouch!

My friend, Margaret, was so impressed by the 3 girls.  She decided on the spot to match what they had raised!!!
Thank you so much to everyone who has helped me fundraise.  I still have more to raise, but I am over 3/4 of the way to reaching my goal to be able to pay for the treatment and related expenses.

Adam is still fundraising for me whenever he sells sno balls!