This is mostly complaining so you can stop reading now. Go ahead, I don't care.
Well, I guess it has been a while. Not much has changed medical wise and Evalyn has been a handful with her Mommy to say the least. But she is learning and I'm being consistent while at the same time letting her sleep an extra hour if I can just have some silence. It's been very hard for me to get on the computer. I'm having a lot of issues with my eyes with the GVHD and I'm so exhausted from being sick to my stomach and getting up in the middle of the night to pee with this water pill that I can just fall asleep mid type or read. Concentration is so hard. Last week. I just forgot what day it was and we didn't go to small group. I think I had to go to Emory on Tues (with my bro and sis, when we should have having fun), so that got me confused. I'm frustrated that I can't keep up with everything I need to do for myself. Give myself insulin today or do my eye stuff? nope Poop my pants, with a phone book on, while running errands and trying to make a little money? Yep Evalyn sure is sweet, she tries to help me so much. From unloading the car, putting on my shoes, kissing my boo boos, putting lotion on me the best she can, and just being a sweet girl, besides the yelling no in my face every 5 sec. That's ok, I always win, and she says yes unless it was a choice then she just gets in trouble for how she is speaking. She is learning so much so fast it blows my mind.
We have so much going on in our family right now. My poor Dad had a daughter, brother, and mother all with cancer and getting treatment. I have a cuz that is having some health issues and another uncle who just had back surgery. Jennifer just moved to California, which I'm so proud of and will be flying out soon if I have to wear a space suit!!!, Daniel is getting ready to make some big decisions and I feel in my heart of hearts will take him from GA for a while, I just started a new business with my art and booth lots of fun but lots of work and I Owe people money from just being broke and starting a business (hey God told me too), Jonathan's getting laid off with the potential for a couple more jobs that we know nothing about, I can't exercise due to the horror of thinking I will shit my pants while doing a zumba move, we can't find the medication that I need for when I get unbearable pain in the middle of the night and can't afford to go to the ER. Jen and Dan had to deal with that pain last week and had to take me to Emory in the morning and Daniel took me home. Thanks Dan! They want me on some pain medication everyday for something that happens every once in a while and I won't do it. I can't sleep on pain meds, heck I'm not sleeping anyway. I did sleep last night because I took something and I almost wet the bed. No kidding. My feet, ohhhh my poor poor piggy feet. I will force myself to post a pick of them tomorrow. Please no suggestions, nothing works, it's the heat and the steroids. I suppose if I sat all day they would go down some, but I can't do it. Babysitters have been difficult to find and keep right now, but I'm glad to be at home when I can when the treat of the hospital is always looming.
Ummm .... something positive. I sang two songs at an open mic night last Monday night when my bro and sis where in town and we had a yummy dinner at the Grit. I'm planning on trying to sing at least 2x per month and build up to a 1/2 hour set. Jonathan had a great guy trip this past weekend which he deserves even more than that with all he has to deal with. My Pop seems to be feeling better and Evalyn finally said Granny.... clear as a bell. My cuz and I have plans to take the kids to the children's museum next Thursday and I sure hope it works out. I continue to meet people that I seem to be able to help and inspire for Be the Match, the Lord, and just that I'm living in general. Meet a women today that is going back to school for Behavioral Sciences, which was on, and maybe still is one day, for behavior sciences. I was able to discuss services for her son that has autism and talked to her about how God showed me to go and do my art at this point instead. I'm still working on getting people to sign up for the be the match run and raise money. I have a lot of exciting art ideas that are just pouring out of me that I can't keep up. Daniel and I are getting to go to the Monastery in Conyers basically for free because I called about my situation and they had two spots available. Please pray that this renews my strength and provides some healing and Daniel finds what he is looking for under God's direction. If I live the next 6 days, I will have made it to 32... going on 70. People ask what I want something. Lows, roof has to be fixed, hobby lobby, kroger, gas, Inokos, i tunes, vacuum, dusting, babysitting, cooking, and another year to be with my loved ones. Mostly, prayers. Liquor is good too. A good Scotch. I have way more in common with them right now than people my own age. Although, I am starting to meet with other moms and kids and that has been fun. I'll try to post some pics soon of our last play date. It was 3 boys and one girl this time!
I have to go to Emory tomorrow... Just pray that I'm in and out without any changes this week and they just leave me alone for a little while. I'm requesting a week off, or demanding. Just one week where I don't have to go there and do something else on hump day.One less co pay, parking ticket, and gas.
I need onion soup.
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.