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.

Tuesday, August 9, 2011

It's a new life.... and I'm feeling good

Birds flying high
You know how I feel
Sun in the sky
You know how I feel
Reeds driftin' on by
You know how I feel
It's a new dawn
It's a new day
It's a new life
For me
And I'm feeling good

Fish in the sea
You know how I feel
River running free
You know how I feel
Blossom in the tree
You know how I feel
It's a new dawn
It's a new day
It's a new life
For me
And I'm feeling good

Dragonfly out in the sun you know what I mean, don't you know
Butterflies all havin' fun you know what I mean
Sleep in peace when the day is done, that's what I mean
And this old world is a new world
And a bold world
For me
Fooor me

Stars when you shine
You know how I feel
Scent of the pine
You know how I feel
Yeah freedom is mine
And I know how I feel
It's a new dawn
It's a new day
It's a new life
hu
It's a new dawn
It's a new day
It's a new life

It's a new dawn
It's a new day
It's a new life
It's a new life
For me

And I'm feeling good



       I love that song. Not sure if I like the Nina Simone version better or the Michael Buble, but either way, "feeling good" is a great song. Hmmm.... Muse does a cool rock'in version that I just found. It's so awesome when you take a leap of faith and are obedient to what God wants even when it may not make sense in the worlds eyes, how God will start to open other doors. Just in the last few days, I have been given a scholarship to Full Bloom so that Evalyn and I can go to all the group classes for free, I have had a cousin call just to see how I was doing and is volunteering to come up and visit and help out for a day, my aunt and uncle seem open to coming up every once in while to sit so that we can have a date, my Dad and Faye are going to start sitting for a couple hours on Wed and Pop and I are going to do our grocery shopping together. He's going to push the cart and I'm the "runner." Hee hee. I have been given 3 singing opprotunities: I'm leading the children's music group next Thursday at Full bloom, I'm singing at the Mama Baby fashion show Sept. 3rd, and I'm waiting to here about me singing the National Anthem at the Be the Match run on Sept. 24th. It's that step of faith, not knowing what is on the other side, not being in control. Man, we are control freaks aren't we? Not that I believe God just wants us to sit away and let life happen to our idle selves. I watched Evalyn trying to figure out her new outside chair. She doesn't have the trust or understand yet to just look at the chair, turn around, and sit down. She has to look at it, climb in almost standing, then sit down. This can get kinda dangerous. Sometimes we just need to sit down in God's chair he gave us or we are going to fall off the chair, scrap our knee, and get dirt in our hair.
Evalyn is always the star of any party. 

               WARNING  SOAP BOX: Ha, if only our consequences as adults were so simple. Finances are still an issues and things will be tight till Jonathan gets a better paying job, or I get better enough to start working again. This is mostly because of insurance issues, aka health care, let's not go there. Ok, I'll go there, but you don't have to. Let's just say we fall in the middle class preexisting condition crack where if I did not have the option for cobra, or Jonathan didn't have a job, I would die because no insurance would pick me up. We make JUST over the limit for a family for me to get medicaid insurance. So when we do the math, someone making less than us actually ends up taking home more than us because we have to pay so much for insurance. So if I magically get another kid or Jonathan get laid off and get's unemployment, or gets a pay cu,t half of our money would not go to getting the care I need and we would come out ahead. BS. No wonder there are people that can't get off the system. I'm thankful for what insurance I can get right now, even though it is expensive.... this new medication is over $13,000 for a 90 supply. That's just one of my meds.
AJ and Ben. I threw a wedding shower for them with the help of  some ladies at the farm. 

         I'm already feeling better not being at the computer for hours at a time. My bones are not aching as much and I'm having as many cramps. I'm still working my butt off on house stuff but "moving" is so much better than just sitting. Still have to get permission to vacuum and clean fish, but I'm going to pick that bone with Dr. Khoury on Friday. I was hoping to go Kayaking on Sat with my sis and bro, but I still have this rash on my legs so I'm thinking that he is going to say no. If it is a no, then we are going to an indoor rock climbing place and out to lunch... coupon books in hand of course. I got kinda freaked out at church the other day, the girl at the nursery had wrappings around her legs. She said that she has a brier cut, some kind of sand tick got in there, had babies in her blood stream, and she has big blood blisters from the infection. Bless her heart, they gave her 50 mg of predisone and nothing to help her sleep or calm her. Some doctors can be so cruel. I usually don't push drugs but I let her know what has helped me and she doesn't have to feel like a chicken with her head cut off.
            We tried a new church on Sunday. It was pretty good, they gave us a spiritual gifts test and I scored the highest in Creativity and Leadership. There is a lot of them. I'm make a copy and get my cuz to help make a printable link if you want to do it. The sermon was good and explained the difference between talents and gifts. The pastor mentioned that the church always burns people out by not letting them serve where their true gift is. For example, if someone is a teacher, the first thing a church my ask them to do, or they may think it is all they can do, is teach. Now why would anyone want to teach all week and then teach on Sunday. Not me. I had someone the other day tell me how great I would be at event planning and could have a good paying job doing it. Well,  I do like event planning, but that usually always leads to working on the weekends, most weekends. I don't think I could handle psycho brides. I think I'll just use that talent for friends and family and put on some fun parties. I'm working on a "Double Dare" birthday party idea in my head now..... if you don't know what that is..... Google.  I liked the music because it was the old hymns I grew up with, nice and simple, no cheese. I do think there should be a 2 comment limit per greeter, about coming back. Not sure why that gets on my nerves, but good greif, my cheeks start to hurt from fake smiling. We didn't get up and leave, so that is a good sign. My grandparents acually went to that church for quite a while. Next week, we are trying Athens church, they are starting a 12 pm service...... HOW  COOL IS THAT? This is lead by Andy Stanley and I've watch some of his stuff online and I really like him..... now the music.... we shall see.
                     This week I have to start that new medication, Exjade, that I have been dreading. I'm so glad that my mom is coming up for a few days! Our friend Marlin is coming up also, he makes us steaks and brings me good cookies. I will be going to Emory on Friday for level checks and hope that they continue to reduce my predisone and other medications. Hopefully, my snoring will get better soon, poor Jonathan is not sleeping well because of it, and I'm getting tired of him waking me up. My nexk is all swollen still so hopefully that will go down soon! Please Lord!



Feeling 80%,
Love, Heather
               

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