I do feel that I have very cleaver and interesting things to write about but this medicine makes my head feel all weird. I must say, I'm terribly exhausted. We have all had a cold for what seems like forever. I haven't had that much sleep, shedding like a snake (GVHD rash), have had more bone pain, on anti rejection meds again that make me feel like an air head, and my eyes are either watering or super dry. At my last appt., my sugar is high, my platlets are low, the CMV (that virus I don't want but have) tested a "weak" positive, and he said that soon I will start going back down on the steriods but up on the anti rejection. Now the GVHD is effecting my eyes so I have to go see another doctor and get some drops. Between drops, sprays, creams, pills, I'm so tired of spending so much time to take care of myself. Do I sound like I'm complaining? Yep.
The good, is that I was able to go see The Artist and go out to eat with my cuz Andy, see my friend Danielle and her family at lunch before my emory appt, had lots of people help with Evalyn this week. She is still obsessed with having her hair fixed, her skicker earrings on, and not having socks on. I wish now, I would have had her ears done when she was little.... better go buy some more of those stickers. We have also had someone come and clean the house some and my grandparents have been feeding up some great breakfasts.I also got asked to sing the National Anthem again at the Be the Match Run in the fall.
Jonathan is going away for a night to see a friend this Sat and Evalyn is going to her Grandma Carols.... momma needs a break and I'm sure that he does also. I could make all these plans of what I'm going to do, what I have meant to do, like clean out my closet, finish a painting, but I will probably just sleep a whole lot and go eat at my grandparents house. I hope to get a picture of her and Poppa watching cartoons together, It's just too cute.
When I'm on so many meds and/or not feeling well. It is so easy to feel like a horrible wife and mother. We have eaten like crap all week. I feel like the house is all cluttered and messy. I feel that there is something I'm suppose to be doing but I just don't know what that is at the moment. Right now, I'm trying to decide if I should like Evalyn to the doctor about her cough and risk gettting something worse, or ride it out a couple more days. Oh, you mom's and maybe Dad's will appreciate this story. On the way to Emory, I looked down at my nail and one of Evalyn's boogers were still there. Gross.
As for me and my relationship with the Lord at this moment, well, it's been very hard to read with my eyes like this and the medication is making me numb. I've been doing a lot of praying, sometimes yelling, when things get really hard. I used to feel there was a purpose to all this, and at times I don't feel like that anymore. I feel like a lab rat that's just paving the way for research. Where's the cheese?
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, February 10, 2012
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