Just a short medical update. I got a call this week that my CMV virus level is getting higher... that is the virus that most people carry but doesn't affect them, just mostly transplant people. Google it.... anyway besides starting the whole 3 part eye care twice a day, the new immuno suppressant, the triple steroids on Saturdays, and now back on the CMV medication, that of course has to come from a "special pharmacy", my body is bound to be freaking out.... better than dying, yes. They also want me to wear a blue mask when I'm outside.... poo. My anxiety at this point is that last week when I had to take the extra steroids on Sat, I had bone pain Sat, Sun, and Mon night, getting less painful as the nights went on, but nevertheless, no sleep doesn't help, just to take another dose of steroids to jack me up again. Thank God I was able to get some sleep last night. Well, like 5 hours, but taking a nap today will be impossible because I will probably be too busy running around doing things I'm not suppose to do like dusting, vacuuming, or planning our 25 wedding anniversary. Hopefully, I don't drive Jonathan crazy today and luckily, he is usually a calming presence. He got to sleep late this morning so hopefully if I spin out of control he will have some. I wish I could be Mary Poppins just on Steroid Saturdays.
Please pray that I find supernatural releif from the bone pain, because nothing seems to work. Someone gave me the idea of using an electric blanket, but the comfy ones are so expensive, and I want a comfy one... can't have something itchy. So in the mean time, I will be in my recliner, with awkward heating pads wrapped around what ever hurts. I'm also having some belly issues due to some of the meds,still molting, eyes are manic, and my lack of ability to concentrate my be frustrating other people. My wrists and forearms are having a lot pain, probably from trying to clean that big ass fish yesterday. I meant big bass, ha ha.
Other prayers needed is that I found out one of my friends Amanda, relapsed 5 weeks ago, but is doing well, but it's a bummer. She has a husband and I son. She has been such an encouragement to me. Her faith in the Lord is so strong. Also, one of my family members was contacted through Be the Match to be a potential donor for a 4 years boy in Calafornia... so exciting. If my illness can help save anyone else, I would do it all over again. Thank you for everyone that continues to sign up! www.bethematch.org
Check this video out....http://www.youtube.com/watch?v=TUP3XqjN69M&feature=share ..... it is so funny.... I went through so much of this. I would sneak into other patients rooms and show them where their mute button was on their machine. I also put magic erasers over my speakers because the amount of noise was killing me. Thank God for Ipods.
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.
Saturday, February 25, 2012
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