Rock-n-Ink

That's right we have a name for the event that is taking place on December 7th.

Getting Sprung

That's right, I should be out of the hospital tomorrow. I will still need to be on IV antibiotics from home but there really is no place like home. I aced my 6 minute walk test that I needed to do for my lung transplant evaluation. I had to walk at least 1100 feet and I walked 1970 feet in 6 minutes. Oh course, I was using 3 liters of oxygen.

I think I am actually feeling better. I am able to cough stuff up.

Event update:

On Sunday December 7th, Memory Lane in Standish, ME is holding a 3 band benefit for me: Bill Lake, Strange Brew and ICGYRO. Plus Infinity tattoo will be doing tatoos starting at $30. 100% of the proceeds from the tattoos will be donated to me. The bar will open at 2pm and stay open until 1am. $3 cover 100% of the cover is being donated to my lung transplant fund. Let's kick this fundraising off right with load music and tattoos!

If you are asking what Roses have to do with Cystic Fibrosis

"65 Roses" is what some children with cystic fibrosis (CF) call their disease because the words are much easier for them to pronounce.

Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's 4-year-old son, Richard, listened closely to his mother as she made each call.

After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless.

He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."

Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation.


65 Roses® is a registered trademark of the Cystic Fibrosis Foundation.

My thoughts

I am on emotional over load right now. When I go to bed I am going to crash.

I had a doctors appointment today. My lung functions were better then when I went to B&W but I am not at my base line. Though that being said we are going to pull the Picc and let my body have some time to heal.

I talked about my lung evaluation at B&W and my Doctor was actually happy that I didn't feel good when I was there.

I talked to the Social worker about how I am dealing with the whole transplant thing and I think I shocked him. It took me a while to realize that I am at the point I am at with my health. Every day that passes that I need Oxygen or get short of breath just walking convinces me more that I need to get new lungs. Some days I feel like I am giving up but most days I feel like I am definitely doing the right thing.

Today, I got a call from my sister that I have been waiting for. She is in the middle of a custody battle with her ex-husband. The guardian finally wrote his report and suggested that primary residence should be with my sister. Yeah! The girls are going to be so happy! All I want is the best for those 2 girls. They mean the world to me. I love them like they were my own.

I had a great weekend. I got to surround myself with all my loved ones. Saturday, Andrea gave me 4 tickets to the Portland Pirates, which is the local NHL AA team. I was able to bring my 2 nieces, my sister and her boyfriend. Earlier in the day I went to the local farm with my nieces and my sister. We picked out pumpkins, went on a hay ride, drank spiced cider and the girls did a hay maze. Sunday I picked the girls up from my sister to bring them back to their dad's because I was going that way to go celebrate my mom's birthday with her. I got the idea to see if the girls could come with me. Their dad said yes so they spent the next 24 hours with me. I think my mom was happy to see them. Sunday night I went to my friend, Andrea's house and did fundraising stuff. My mom, my nieces, my friend tracy, her daughter and Andrea's 2 kids were all there. It was so great to spend time with all of them. Monday, I went to breakfast with my mom and Dad and them went and visited my Grandmother and Nana.

I am very tired but very happy!

Girls weekend

Last weekend was our annual Girls weekend. This year we went to Mt. Pocono, PA. We Stayed at Mount Airy Casino and Resort. I swear our room was haunted. Every time we spent time in the room, I got sick. I had fevers, need my oxygen, had night sweats and lost my appetite. I would always feel better once we left the room.

We spent a lot of time just relaxing. When we did leave the room we either went shopping or went to get something to eat. We literally shopped until we drooped. The best part of the trip was definitely the 3 hours we spent in the spa. I found my new love...eucalyptus steam sauna! Wow, I could breath!
By the end of the trip I ran out of oxygen which terrified Diana and Kim. So we got a wheelchair from the Hotel. That was loads of laughs. We also had a huge issue with the heat in our room. It was hot and stuffy we complained many times. After 3 maintenance visits, I finally lost my cool and ended up getting us a free night!
I had a blast. It is always nice to be surrounded by loved ones. I have learned that laughter is the best medicine. I love you Diana and Kim. I can't wait until next year.

Sharing this lovely letter of Support

Dear Friend,

I am writing to you today to let you about an a friend in need. Our friend Stephanie (Tutlis) Briggs is currently going through the evaluation process for a lung transplant. Stephanie has cystic fibrosis. This is not only an extensive surgery but it is also going to be extremely expensive. Stephanie has been advised to raise between $100,000 and $300,000. Stephanie will have the procedure at Brigham and Women's Hospital in Boston, Mass.

Stephanie is an extremely positive person and she is always willing to help others. You can always count on Steph to look for a smile, laugh and encouragement. Even when she is in the hospital for yet another infection, Steph can still make me laugh. Stephanie is very supportive of others. I know everyone who has come in contact with Steph can tell about a time that Stephanie has made them laugh, held their hand, made them smile or helped them out of a jam. She is a true friend to so many people and now she needs our support. My life has been blessed by having Stephanie in my world, I know many others can say the same thing.

If you can find it in your heart to donate to Stephanie's transplant fund I know Stephanie and her family would really appreciate it. Any amount that you donate will help reach her goal.

Stephanie's fundraising campaign is being supported by the National Transplant Assistance Fund. Her page is http://www.transplantfund.org/Restricted/patient-detail.cfm?pat_id=2630&CFID=7662373&CFTOKEN=74167330.

Our new website http://www.newbreath4steph.com/ has a lot of wonderful information and ways to donate. We update this often, adding pictures and more. I know Stephanie loves to read the messages many people have left in the guestbook. The pictures and notes people have uploaded onto the fundraising wall are wonderful. We really appreciate everyone who has supported her.

We will be holding a dinner/dance for Stephanie. This will be help on January 17th at the Rumford Eagles. The spaghetti supper will be from 6pm-7pm with the dance from 8 pm- midnight. The band Monsta will be playing and we will have a Chinese auction. Please contact me at 357-5606 or ayork@msad21.org to get your tickets. This promises to be a night of fun and I know Stephanie would love to see all of you there.We have begun selling 50/50 tickets to be drawn on the January 17th at the dance also. We are also having a pie and cake sale, you can find those details on our website also.

Please feel free to contact myself or Stephanie for more information.

Thank you for your time and your support.

Sincerely,Andrea (Mitchell) York

Please forward to all of your friends.