The Emory appointment went well but we don't have any of the results yet from the MRI and CT, I could have waited but decided to leave early instead. If they find something that requires immediate attention, I'm sure they will let me know. I will call on Mon or Tues to see and get copies. The CT was easy but the MRI was not what I expected. I had to change into scrubs and was in a tiny tube that had very loud buzzes for a good 20-25 mine. I should have been more informed so I would have known what to expect. They dropped the steroids down so that is good, please pray the rashes and whatever else is under control by my new immune system, and I don't have to go back up on the meds. My sugar is high, I'm still swollen, still having headache and cramps. Mom said that this is a fat stage and everyone has them. Whatever, I say screw steroids and all their side effects. I read that even if I starved myself, I wouldn't lose it because it increase the stress hormone cordisol that redestribues fat to these areas. I asked my friends if I could borrow their maternity clothes for a while, this baby should here within 6 weeks :). I hope that baby is named " no more steroids".
I was able to get some people, hopefully, to sign up for Be the Match as a donar (physicially) and a donar (financially) for the run/walk in Sept. Click HERE, if you want to join my team or donate.
Help save a life like mine!
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.
Have you had MRIs before? Were they the "open" kind? Definitely you should be informed about that! From what I have read about the weight gain side effect of steroids, there's really nothing you can do until you're off of them and they are out of your system. So you might as well eat what you want.
ReplyDeleteand that's just what I'm going to do!! Nope first MRI, nope defiantly not "open". It wasn't so bad but I could see how some people could wig out. I'm on two many meds and too tired to get too upset about anything :) It's kinda nice.
ReplyDeleteI'll be praying for you to be able to stop the steroids as soon as possible! and I am planning on signing up for your team on Friday- hopefully I can get a few family runners to sign up too! :)
ReplyDeleteMaybe if you need another one you can get an "open" one but I am sure they're more expensive and not everyone has them yet. At least you weren't too upset by it...I know people have panic attacks in them sometimes.
ReplyDeleteLily,
ReplyDeleteThat would be great! We are going to go out to eat afterward if you want to join the team! I just love the item you all make, I go to get my aunt Lisa to your store.