As I said in the last post.... I'm having a bad rash... and it's getting worse. I finally broke down and called emory today and it only took 3 hours to get in touch with someone. We didn't know if we were going or staying or trying to find a sitter or what. So, I'm going into tomorrow, and Friday. An itchy rash is awful, you can't do anything really because it's all you can think about. It can drive you to drink. No kidding. A rash can mean that the GVHD or the CMV is coming back so please pray that is not the case but pray that I'm not allergic to something I really like, like chocolate, or my husband. ha ha
I'm also having some stomach issues, headache, bone pain, and a tiredness I have never know. I guess making new bone marrow takes a lot of work. Today I have been in bed most the day and just felt like I could get up. I'm going to try and work some now, getting fired at this point would kill me, literally. They have been wonderful to me..... Gosh I'm itching so baddddddd!!!!!
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.
I am so sorry that you're dealing with an itchy rash. So am I! Obviously it is not anywhere on the level of yours, and with the potential for something like GVHD or CMV; I find out on Friday if it is being caused by celiac disease (gluten intolerance). If so, no more wheat or barley for me! Not the worst thing in the world of course but not fun.
ReplyDeleteI will think of you scratching as I am scratching. :P I hope that everything is under control for you soon!