Evalyn playing with a toy at Jill and Steve's house, She likes the wind more than the balls.
It's been pretty rough, I'm not going to lie. There have been absolutely wonderful moments in the last few days that I will cherish and by God's grace I was able to enjoy despite the pain and sickness, such as the video above from small group tonight. Evalyn sitting in her chair entertaining herself with her books when I was sick and had no one here. The look on her Daddy and her face when they have not seen each other all day.
I will refer to last nights sleep as "the screams". First, I woke Jonathan up screaming my head off with a horrible cramp in my leg. The cramps and pain in my bones and joints are getting worse this week probably due to reduction in steroids. So it will be worth it in the end. I had one cramp in my hand today that lasted 10 min. Later that night, Jonathan woke up yelling about a spider or a bug that landed on him and was crawling my way. I think he would have knocked me off the bed if he could have to save me from the creature. So after a couple adrenaline rushes, lets just say there was not a lot of sleep. I got up and piddled, not to mark my territory, around for 45 min and then when back to bed, where Wallace was laying upside down on his back.
I woke up with the shits. Yep I said it. Or wrote it. You all think it. Do not think that at certain points today I was not afraid of having to change clothes. It has happened to me before. I changed my plans this morning so I could stay close to the toilet. If I could set up a poll on here, I would, and you could anonymously check if you have pooped in your pants after the age of 10. I just picked a number. My head hurt, my toes hurt, bones hurt, everything hurt, and then on top of that I was thinking I might have to go to Emory since stomach issues are one of the first signs of GHVD, which can happen as the steroids are reduced. I still have some serious hospital anxiety. I really don't want to go back, ever. I took some meds and luckily Evalyn took a pretty good nap so that I could lay down. Then I called my Mommy.
I did start to feel better later, after 3 more pills, and Corynne came over and helped with Evalyn and we were also able to work on some art projects. Tomorrow, I have a CT of my sinuses and a dermatologist appt. Please pray they figure out what the heck these spots are on my leg. Hmm, hand cramp, guess I'm done for now.
Love,
Heather
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.
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Praying for you Heather. I get those cramps too in my wrists, legs, and feet. They literally paralyze you and you never know when they will hit or for how long. And the diarrhea, oh Jeeze, and GVHD too. Sending prayers and you are right to focus on the blessings too. The post-trauma and anxiety with the hospital is our new normal. if you want to talk anytime, you can call me.
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