Giving THANKS!!

Thank you to everyone that contributed to such an amazing day!!!

A special thanks to Bob Mapes Jr, because I love him and he gives me something to celebrate everyday!

Thank you to our parents (all of them! including Bob, Victoria, Joy, Steve, Carol, Dan, and Sue)- for teaching us how to give and receive LOVE. And LOVE is what LIFE is all about. You guys were the first to show us what it means to truly love unconditionally. (oh and thanks for putting up with our wild ways, lol)

Thank you to my Dad (Steve) and Carol, for dinner at Lovin Cup. We really could not have done it without your help.

Thank you to Leslie Zink & Eric Ward at Lovin' Cup for making our rockin roll fantasy wedding a reality. Thanks you to Willy O'reilly for organizing the music and entertainment. Thank you to the Niche (including Willy O'reilly, Eric Ward, Todd Nestor, and Jay Schreiber) for melting faces! You guys sounded awesome. (Thanks for the signed drum head with the set list too. So cool!) Thank you to RootsCollider (including Wil Mckenna, Dexter Redic, Bill Smith, and Jim Grillo ) for the epic acoustic set. You guys looked and sounded great! The music was just perfect!!

Thank you to all the amazing staff at Lovin Cup. Everyone was impressed with your service. Really excellent team!!

Thank you to our photographers Jocelyn and Laura Mesiti. Also a big thanks to Ronald Robert Morales at Rocpic.com for the photos and videography. We will cherish those images for years to come.

Thank you to Heather Saffer at Dollop cupcakery for providing our delicious mini-cupcakes.

Thank you to all our family that came out.  And thank you to family that couldn‘t make it but still sent their best wishes. We are so grateful to have you in our lives. Thank you for your love and support along the way. We would also like to thank you for all the generous gifts, it really means a lot to us both. A special thanks to my sister for just being the best ever! (and for my beautiful dress!)

Thank you to all the friends for enriching our lives. I tell ya, we would not have nearly as much fun without you guys!! Thanks for the tickets to see Phish in NYC at MSG. We were so surprised. We are so excited!! Last year we live streamed from the couch, this year we will be there!! We really can‘t wait!!!

A super special thanks to our BFF‘s for always being there for us!! (you guys know who you are, love ya!!)

In this spirit of Thanksgiving Bob and I are just overflowing with gratitude. We are still in awe of how successful our speical night was. It was the best night of our lives. So, thank you to all that participated and contributed to an EPIC night. Thanks for being a part of our lives and loving us and supporting us along the way. It’s these connections that we value most. We LOVE you guys!!

One LOVE

My little car

My little car

written 3/25/09

"My little car, she’s one of my best friends. She always took care of me, kept me safe. She taught Bob how to drive. She taught me a little something about faith. She could run on fumes for days, when I couldn’t afford to feed myself. She acted as my primary shelter during many fun weekends, and when I had no where to go. 100,000 miles in seven long years. Oh the places we went. We traveled alone, and weighted down with as many friends as we could fit. We traveled in sheer bliss and utter despair. She was always there for me, something I could rely on.  In rain, ice, and snow, on road and off, there was nothing you couldn’t do.

            But now after 12 hard years your age is showing. You’re stalling at red lights, and chewing through tires. We are starting to question if you’re safe. So what now? Replace you? I have such anxiety about your future. How long do you have left? Or is it already over?"

Yeah, it was pretty much over. This car was sold in October of 2009. But it is still a topic of conversation between Bob and I. She was a great little car. The hood was forever etched with a giant heart and said "dirty hippy car" from a time I drew on it while covered in dirt at a festival. I just could not contain my impulse. But I could not get a good picture of it, it was slightly subtle. It had many dings and dents. But I always thought it was the best car ever!

I had received this car near the end of winter in 2002. It was a gift from my father. My great aunt Irene passed away and my dad got her car and I got my step-moms old car. At the time he gave me the car, my van had just died and I had nothing to drive. I had been praying and my prayers were answered. I had always felt extra blessed driving that car. I felt as though my (great) aunt Irene was keeping a watch over me. I did a LOT of praying in that car. 

The bumper sticker said "None but ourselves can free our minds"

Bob and I were recently talking about what the 11th of the month and reflecting on what it meant and will mean to us. I joked that car insurance is due the 11th of the month. But then I thought about it... It must have been the 11th of the month the car was put on the road.

God winks at me again :)

sunset 7/25/11

Monday was a nice night, finally a little break from this heat wave. I had not been feeling well and spent the weekend mostly in bed. By Monday I was ready to get out of the house. Normally, if we go to Cobbs Hill we walk around the reservoir. But this time we just sat on a blanket over the dead dry grass and watched the sun set over our beloved city. We made each other laugh, and commented on the contrast of the geometric cityscape and fractal nature of the trees around us. We discussed future plans and past memories. We sat quietly and soaked up the last few rays of sunlight. To end our evening we went and got ice cream.  I really adore spending quality time like this with my soul mate. Moments like this are what its all about.



SuperBall IX *Phish's Biggest. Ball. Ever.*

Over the Fourth of July weekend I went to my first Phish festival, SuperBall IX at Watkins Glen.

(this photo taken just as we got in line to go in and minutes before our beloved Jeep overheated.)

Still a little surprised we managed to pull this weekend off...

We decided Tuesday (as in June 28th) we would go and got our tickets Wednesday (day before gates opened). On Thursday as my pain increased so did my anxiety, was this really going to work? Did we just waste a bunch of money we tried so hard to save? (I mean, after we added up everything, this weekend cost us more then a month of rent at our apartment!) We rushed around to quickly pack and get ready. After an emergency chiropractic appointment (and a quick stop at my Dad's to borrow an air mattress and a cooler, Thanks Dad!) we left Friday afternoon. Most of our friends had this planned for months and showed up soon after the gates opened on Thursday. We showed up an hour before Phish hit the stage Friday evening and barely planned anything, that's how we roll. We had one slight issue waiting in line, our Jeep overheated. But with a little patience and some water, it was easily remedied. That was about it as far as issues over the weekend. Unless you count me leaving early...

We camped in the "Accessible" (aka-handicap) lot. It was close to the stage and the medic. And it also happened to be right where they parked the "pace" cars. I took this as a sign and made sure to pace myself. The accessible lot was just that, with clean flush bathrooms and showers and really close to the stage area. I was quite impressed. It was a huge help. Nothing like living in a tent city to celebrated the United States!

Bob and I were so happy to be there. We really needed a get-a-way together.

 What could be better then drinking delicious cold beer on a beautiful day with my soulmate at a Phish festival??

Answer: All that and a hammock!

(we really need to get one of these!)

Oh, and add some of the most awesome people eva!

3 of my favorites!

 Ahhhhhhhh!

A few other photos from the weekend: 

 Mercy Flight

So many balls!! 

Phish played 8 sets including a secret late night set Saturday night. I got to see 6 of them and live streamed the last 2 from livephish.com. Well, to be honest, I slept through the first set of Sunday night, I was totally exhausted. It was an EPIC weekend to say the least. The weather was so nice, sunny and hot. While I am a bit sad I missed out on Sunday night, I am so happy I made it through the first 2 nights. It was a major accomplishment for me! I am really sore now, and probably will be for a while. But it was so worth it! Fibromyalgia and camping do not mix to well. It is very physically demanding and there is little protection from the elements. Most people go on vacation to escape reality a bit. I do not have that option, Fibromaylgia follows me everywhere. I don't ever get a day "off," but thats just how it is for me. I am still learning to live with a chronic illness, its not easy. But I have learned to have fun despite my chronic pain. It all worked out though, and since it was so close, Bob was able to take me home and go back to enjoy Sunday night.

 

Me on the ride home. Very tired and really sore, but all in all- content. 

The map

Set List:

Friday July 1, 2011

SET ONE

Possum

Peaches En Regalia

The Moma Dance

Torn & Frayed

NICU

Bathtub Gin

Life On Mars

My Friend, My Friend

Wolfman's Brother

Roses Are Free

Funky Bitch

Quinn The Eskimo

SET TWO

Crosseyed And Painless >

Chalk Dust Torture

Sand >

The Wedge

Mike's Song >

Simple >

Bug

The Horse >

Silent In The Morning

Weekapaug Groove

Joy

Character Zero

ENCORE

Show Of Life

Saturday July 2, 2011

SET ONE

Tube

Kill Devil Falls

Ocelot

Lawn Boy

Divided Sky

Boogie On Reggae Woman

Camel Walk

Cities

Poor Heart

46 Days

Susskind Hotel

When The Circus Comes To Town

Timber

Back On The Train

Suzy Greenberg

Monkey Man

SET TWO

Runaway Jim

McGrupp and the Watchful Hosemasters

Axilla I

Birds Of A Feather

Stash

Sample In A Jar

Heavy Things

Horn

It's Ice

The Mango Song

Rift

Scents and Subtle Sounds

Run Like An Antelope

SET THREE

Golden Age >

Prince Caspian >

Piper >

Tweezer >

Julius

Backwards Down The Number Line

Twist >

2001

Harry Hood

Cavern

Golgi Apparatus

A Day In The Life

ENCORE

Loving Cup

Tweezer Reprise

****Plus a secret Late Night Jam session set

Sunday July 3, 2011

SET ONE

Soul Shakedown

AC/DC Bag

The Curtain >

Colonel Forbin's Ascent >

Fly Famous Mockingbird

Destiny Unbound

Big Black Furry Creature From Mars

Wilson

Mound

A Song I Heard The Ocean Sing

Time Loves A Hero

Reba

David Bowie

SET TWO

Big Balls ** 

Down With Disease >

No Quarter

Party Time

Ghost >

Gotta Jibboo

Light

Waves >

What's The Use

Meatstick

Stealing Time From The Faulty Plan

The Star-Spangled Banner

ENCORE

First Tube

**(I soooo called that AC/DC cover, Big Balls!!)

Phish's SuperBall IX, the Biggest. Ball. Ever.
Was the BEST. Weekend. Ever!

The Power of Prayer

Asking

Receiving

Gratitude

If you look closely you can see I am live streaming the eclipse, thanks to google.

Cupcake Bliss

Bob and I went to  Dollop a cute little cupcakery today and had these specialty cupcakes made.

This is me is cupcake heaven.

Petals from Heaven

Our Jeep sprinkled with pink heart shaped petals 

I love little things like this. I can see the beauty everywhere!



Its raining

This post was written in November 2010, I just noticed it was never published.

Days like today suck. Its raining. My back is killing me and I am bored. Really bored. I should be cleaning, and I'd love to be painting, or going out for drinks with my friends. But I am sitting here bored, too tired and too much pain to do much of anything. Its difficult to concentrate on anything else then the pain. I let my mind wander to happy places that make me smile. I was laying in bed this afternoon wondering if it was even worth it to get dressed? Suddenly, I am thinking of unicorns farting rainbows. WTF?! Really?! Whats wrong with me? I laughed out loud, got up, threw on some jeans and a tee shirt. I was surfing the interwebz when I came across this CNN article on mindfulness in dealing with pain and mental illness. Mindfulness and positive thinking is a very big part of how I cope.

http://www.cnn.com/2010/HEALTH/11/16/mindfulness.therapy.meditation/index.html?hpt=C2

I do my best to enjoy the little things in life. Stay in the moment. I do my best to think positively and keep my eyes open for the silver lining. But I can't seem to "positive think" my way healthy, trust me I have tried! In the 5 years since my diagnosis of Fibromyalgia I feel like I have tried everything. I refuse to accept or believe I will live the rest of my life like this-- it's much to daunting. I take it one day at a time. Sometimes I can go a week or even 2 keeping up with day to day life fairly well, I get my hopes up. "I am getting better" I think. But then soon enough I end up in too much pain and stuck in bed all day. All hopes dashed. I don't get a say in which days I am sick. It could be your birthday or even my own, Christmas, or that concert I have tickets for. The weather has a big part in how I feel. But not always, it can be a beautiful summer day and I am in bed exhausted. But when I am stuck in bed, that when being mindful and present really helps. Sure its easy to be happy and present in the park frolicking in the sunshine, but to remain present in the pain? Its hard. Especially because being in pain causes me to be more spacey then I am on painkillers. I still don't get this. In fact most of the crap I deal with from the Fibro, I just don't "get." Like why do some fabrics make me cringe? Why am I so sensitive to fragrances? It really makes no sense to me. I don't really expect people to understand what life with Fibro is like, because I don't really understand it myself. I do expect people to at least try. I am lucky to be surrounded by and supported by so many good people. I wonder if that is due to positive thinking? Would I have attracted negative, mean people if I had a bad attitude? Would my perspective be skewed into thinking my life was a living hell with negative thinking? I think that's fair to say so. Sometimes I slip into that dark side, and from over there my life looks like it sucks. But over here on the bright side, life is not too bad, and I am getting by, and having some fun along the way. Over here on the bright side life gets better everyday. It's not the life I planned, or would have picked for myself, but its mine. So, even though is raining, I got a little sunshine in my heart. I'll lay in bed with my heating pad on my back singing along with Bob Marley ---"Positive vibrations, yeah, Positive!"

http://www.youtube.com/watch?v=cvVyg77j0YY

Delusional

I am an optimist. Always have been always will be. I think that where there is a will, there is a way. I can keep my hopes up when faced with the impossible. I have Fibromyalgia and I think I can cure myself. Crazy right? I think I can do something doctors and scientists can‘t. I think with proper nutrition, exercise, sleep, and lots of love and support- I can cure myself! I truly believe with LOVE anything is possible. I am not interested in ”accepting” that I have a chronic illness. I am not even interested in ”dealing” or ”coping.” My one track mind is focused on one thing- getting better. I have made lots of progress in the past few years, but I still have a ways to go. I try not to get too ahead of myself, so I don‘t get too disappointed when I have a set back. Maybe I am totally delusional for believing in a cure? But it is what gets me out of bed each day. It‘s what makes me keep trying. It’s not easy to be in pain and be exhausted all the time. It was no shock that people with Fibromyalgia have a higher rate of suicide then people with bi-polar disorder (manic-depression). If I thought I was going to have to live like this for the rest of my life, I would want to kill myself too. Luckily, I don‘t think it will be like this forever. I have faith that God has a plan for me and it includes being restored to perfect health. I believe in miracles. I have to. There is no other option for me. I believe in the power of prayer. Maybe you could say a little one for me? I pray everyday that God will cure me and I will live the rest of my days pain-free and healthy. Maybe if there were enough of you out there praying for me, I will get my miracle? It couldn‘t hurt. So, if you could take a second and send some healing thoughts my way it would be much appreciated. Pray a cure will be found for all of us. 

May 12th is Fibromyalgia awareness Day.

So be aware :)

A year later…

Baby, you did not break my heart, you opened it ♥

Happy first birthday in Heaven, we miss you and we LOVE you so much!!

 ♥ Page ♥ 3/13/10

What can I say baby? I still miss you. I will always LOVE you! We will always LOVE you!! Page, you changed us both forever. We will never forget. You will always be our baby. Our first born. Our son.

It still boggles my mind that I am a mom. I am a mom, to an angel. I do not comfort my baby in the middle of the night; he comforts me when I wake up crying in the middle of the night. No one calls to see how the baby is, they just check in to make sure I am ok. There are no pictures. Only a scrapbook of ultrasounds, one of you alive and healthy and the one that delivered the tragic news you had died. I kept the first few things I bought for you and gave the rest away. I kept the little Phish onesie and the Phish hat, they were the very first things I bought. I kept the sympathy cards. I kept the baby‘s breath from the flowers that were sent. I needed these things, something tangible to touch, something to hold.

I miss you and LOVE you more then I can express in words. You will always be a part of our life. A momma never forgets. Thank you for the little signs to remind us, that we are loved too.

I love you too!