WELCOME

Hello,
Welcome to my Blog! Yes, I have been in the fight of my life against Leukemia, insomnia, depression, side effects of medications, molting skin, pooping my pants and this list goes on.... however, I still love my life, and that's what this blog is about Real Life. I hope to meet others who trails have brought them closer to the Lord and molded them for the next step in God's will. In January 2011 , my family, physician, and Be the Match was featured on a Fox 5 news story about bone marrow donors and transplants. In March, I was interviewed on Atlanta and Company along with Be the Match. I was chosen to sing the national anthem at the Be the Match Run last year and will also be doing it this year, along with some other songs. My team, no thanks to me, raised over $4,000 and raised more than any other team! Please join my team this year or consider donating here at the Run those Stem cells out ! Team I was also chosen for a patient advocacy panel for the international council meeting at Be the Match in MN in November. How exciting!! I ended up not being able to attend due to the relapse. I had hoped I could help raise awareness about how easy it is to sign up to be a donor and how many people need your help! Please go to bethematch.org and sign up! I was able to have my bone marrow (same as stem cell) transplant at the end of March thanks to a 22 year old donor oversees that I hope to meet her one day. As I came up on my 6th month mark and continued to add more normal activities to our lives, I relapsed, meaning that the that the cancer had mutated and the leukemia came back. I spent 2 more weeks at Emory and some other nights here and there and now I'm on a drug from the FDA. I have a compassion waiver so I am able to get it. I have to take it day by day sometimes hour by hour. Time keeps moving and my little girl is growing up. I'm lucky that I'm getting to see it. I continue to praise God for his wonderful blessings he has shown us including my wonderful husband Jonathan, baby girl Evalyn Rose, supportive family and friend, great medical care, new readers, and the chance to make a big difference, even if that means being a Lab Rat.
God Bless You!

Please read, comment, enjoy, learn, grow, LOVE LIFE.

Most Recently I have started a booth at a local consignment store with handmade jewelry from friends, crafts, and my own art from recycled materials. It is called DAY by DAY. God was very clear with me starting this. Please look over to the right of blog and click on Day by Day to see some pictures. I'm just getting started but I am taking orders from people that I know. You will be able to personalize items, etc. I just haven't decided how I will be selling them via internet yet. But for now, the jewelry is at A Weekend A'fair in Athens, GA and will hopefully be at some stores downtown soon.

Friday, November 5, 2010

Nov. 5th OPEN EYES, Wine Please?


Hey,
        Today I have to get 2 bags of blood. That was a surprise to me. I'm feeling ok, I just got really tired. It has been nice to not have so many visitors today so I could get some rest. I will be here for a while and will be back a lot, so I'm glad that visits are getting spread out so I don't get so many and then get lonely.            
My bro Dan came today, that was awesome. He is so cool to talk to.He's going to turn out ok. hee hee  I got to see Wallace today. He was cold because we had to be outside, but i still let him kiss me. Jonathan was great today. He brought my guitar, crochet stuff, more pics to put up, clean clothes. Bless his heart, he even tried to help me wash my hair.... he doesn't have much so he doesn't have much experience.... and lets just say that with bruises all over me and weird tubes, it probably was not what he had in mind for a shower with the wife.... ha ha..  

         So, there is a great Donald Miller book called " A million miles in thousand years" Thank goodness I read this book. I won't tell you too much about it.  But, let me tell you, as a character (a tree) in this story about a forest (the world) I am completely humbled and I'm amazed at what I have learned about myself, others, and how much I still have to learn. Whats the point of a good story if the character doesn't change?  A boring story. This story is not boring that's for sure.

  So my friends and family, in the last few days I have learned that an elderly women in a facility may not be as crazy as everyone thinks. I didn't know what day it was because no one bothered to change the date on my white board. An it is nice when people write there name down. It's nice to be able to express feelings and have them validated without someone telling you what you need to "do" to not feel that way anymore. Also it is annoying to have your potty chair have stuff in it and you ask to have it emptied and and they forget. And got forbid you have to asked 3 times to get something to drink when your mouth is so dry from side effects . And people what to know what the meds are they are taking whether they are 30 or 80 period.... either way it is hard to remember and it  is important. I've already caught 2 mistakes here. I've learned that another elderly lady in my life takes forever to take her medications because they really do suck. Uppers, downers, Anti this, side effects, etc, etc, And it's so annoying when people say... have you taken the rest of your million meds.... blah blah.  Which brings me to having more empathy for the DD people on my caseload. I never had much compassion for SIB (self injurious behaviors) because I didn't understand it. Well after having a reaction to platelets and having to use every ounce of will power not to scratch my face off or pull my hair out, I can see how someone with MR, Autism, etc , could not control themselves.  Lesson learned. Don't even get me started on constipation...... bad bad bad.  I need a glass of wine to get things moving.  I did do some advocating here at the hospital today.... lets just say the front staff is going to start being a lot nicer to patients, nurses, techs, and they will do it with a smile on their face.  They just needed a patient to stand up and say something to the director.... so I scheduled a meeting.... in my room. And she said I was right and something needs to be done. I should have asked for a discount. 

Thank you all for your prayers. Please pray that my little girl doesn't miss me as much as I miss her. Her heart is too little to break. I have only seen her twice this week for 50 min at a time.

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