***Steroids** I did get a little bit up sleep so I'm lucky. I woke up with my mind racing and hungry.... that's what Steroids do. No, I don't want to take anything for sleep. I can sleep anytime I want, well except when I should be. I called my nurse to let her know she could go ahead and take my blood the tech could do the vitals. Hopefully I'll get some more sleep in a little while. At least my mind is on good and positive things: thinking about my husbands b day, visits this week, and the Lord. Well, my hair is super awesome.... and I just caught a glimpse.... it's rad. I'm more calm this week then last week and I'm not trying to run the show. Don't get me wrong... I still have a list.... a very well thought out list that I will meeting with the director about in my little office this week. I still have a letter to write to the president and already have the social working talking to her boss about a voting system here.... wouldn't it be awesome if Emory was the first? I can just see a little booth where you have to put on gloves and a mask to be able to vote to reduce the risk of something spreading :)
**Nurse Omena** Funny, I requested my weekend night shift nurse, Shirley, she is the one that was here last week for the dream. I didn't get my requested. Didn't really bother me too much, Omena, seemed nice. She is Indian.... dot not Ho ho... as my Nanny Cox would say. No offense Indian's, but that is funny, I don't care who ya are. I can make fun of my own race too, got to keep it light! Omena and I talked some while she was doing vitals. I didn't realize the Emory really specializes in Leukemia. She said there is a whole floor for leukemia, and BMT's, and one other floor for just other medical oncology. Well, then of course they have the clinic that treats out patient. Weird how we think of people based on race. For example the other night, a nurse said " are you not watching the country music awards?"
"Um no, that T.V. is staying off, but I may watch some highlights online to see what that cute little Taylor Swift did and listen to Carrie Underwood's amazing voice."
Now, would she have asked me that question if I was Indian or Black... probably not... and that is OK.
So, I say that to say that I would not have assumed that my nurse Omena was a Christian. Why? Well, I don't know, I guess I have not met many Indian Christians, just like I have not met many Hispanics that are not Catholic. So sue me. We all have are little things we assume about people. Wonder what people will assume when they see me with my blue hair :) Brave, wild, crazy, a rocker, unruly, a rebel, 18 years old, hmmmmm. I should take a poll.
Omena ended up being such a blessing to me tonight, I was lucky to get her! She asked if I was a Christian. I said "yes!" She said "Trust in God" with her cute little accent. I was able to tell her a little bit about the dream and how God is already using this situation to bring people closer to the Lord, closer together, and changing me for the better. Her eyes lit up as she spoke about how God can heal me and that she is so glad that I'm "In God." I think she means seeking the Lord instead of just believing in a cookie cutter Jesus relationship. She probably doesn't say cookie cutter. She probably uses an analogy about rice.... way more healthy. I hope I get her again!
** Knowing the Lord** This brings me to thinking about our small group study. We did a very slow, long, and wonderful study on Ephsians. We talked a lot about the difference between knowing who God is and KNOWING him. You can read about me on paper, you can talk to people that know me, you can watch me on a video, you can read what I write, but you could never really KNOW me unless you spent time with me. Right Pat R. and Michelle S. ? ( and my peeps) People do that with God. I am guilty too. I spent many many years, even as a Christian, trying to feel my heart and life with things not of God. Wasted time. I knew about God but did not KNOW him. When you KNOW him, you are filled with him and not the things of this world. Does that mean that you are not still human and do stupid stuff... ummmm.... I'm with stupid right now. I'm seeing some people close to me right now, doing that. It's sad because you always get heart broken... always. God won't break your heart. Seek him. Been there, tried that, got burned? Yea, me too, more than you know. It was a fallen world and people that burnt you, not him. Seek HIM.
In Ephesians 1, the first part, vs 3-14 talks about God. Most Christians, whether they are living for God or not would not disagree with the Theology in these verses. Well, I'm sure people would disagree on anything. The second half of the Chapter, vs 15-23, talks about KNOWING him. This requires work people. Kinda like married and your relationships with anyone that you value. Don't call your mom for a month and see how that goes.....just kidding. You better call your mom if you have not. I'm really bad at this. I get comfortable in my knowing about, get busy with life, and let it slip by. That's why it is so exciting to see a new Christian, really wanting to learn and study the Lord. Growing up in a bible based church and seeking the Lord a lot during certain points in my life, I tend to have my theology intact and honestly don't really like going to church to hear something that I feel I can speak on myself. Sorry... this is me.... honest. That's one reason I love the small group setting so much. I see God working in our lives because we are talking about him, talking about knowing him, praying for each other every day. I love bouncing ideas off people and hearing another point of view. Yes, EVEN when we disagree. Inf act, I like it when my thoughts are different than someone else. I can debate but really if you believe in the main things.... I'm not going to judge for other crazy things your think. Just kidding....well not really.
I think that is why I like the idea of home churches too. An old friend of mine, Leslie, and I knew of a home church. I was able to visit for a weekend. It was great. Everyone was able to give and speak. Everyone was included. We didn't sit in rows and listen to one person speak. Many things that we do in "church" is not how the first churches started out. I read a great book called the "History of Christianity", I think.... I'll have to make sure, so don't try to find it yet. It explained in one part about when the Roman Emperor Constantine, a pagan, when he became a Christian, he naturally adopted some of the Pagan traditions to make the new "religion of the country" easier to accept and so on. The pews where there, there were a lot of people, why not? Now... don't read too much into what I think. I won't judge you so don't judge me either. If you like going to your church, that's awesome. Just make sure that you are also building relationships with HIM and with other people. Too many times, I have walked into a church, said my hallelujahs and hellos, and walked into Monday with a pat on my back but not much else. People are important. There are awesome ministries at most churches that only a hand full choose to get involved in them. Without people, who Jesus loves, what is the point of all this. God calls us to reach out belong our little lives. People are busy.... they have tee ball, T.V, bad marriages, tantrums between church friends, trying different things to fill the hole, trying to keep up with the Jones by working all the time and accumulating stuff. Been there.
In the book by Donald Miller," A million miles in a thousand years." He talks about choosing a better story for you and your family. What is really going to matter in 50 years? I'm sure you know what won't. Spend time with people. No, not just on Holidays.... yuck. Make a call, send a card, volunteer, get your family out together to do something that matters. Something that they will remember your family did together. Something you created out of nothing. That book really is wonderful in so many ways... it changed my attuide on a lot things and is helping with deal with all this. I wish I could get you all copies.
**Hippies** Well that got me off on a tangent. Back to home churches and me being part hippie. I really like hippies. They are so caring, take time to enjoy nature, life, each other, healthy food, the soil. They seem to be more willing to listen, really listen, and don't care when a show is coming on T.V. Hippies are people people. They slow down. That's hard for us to do, isn't it? Right now, I'm really missing my November retreat I go on every year. I found it to replace my yearly Ossabaw island camping trip trip I used to go on. I will go there again, I just have to take a college class to go, insurence issues for people that want to audit. It's a little place I call the Hippie compound in south GA and I try to go in Nov and March. I live in a tree house for a few days, eat organic food grown in the garden, meet the most incredible people, do yoga in the glass house, learn about edible plants and mushrooms that have healing properties, learn about solar power, and grey water systems, get fresh eggs from the chickens, and rest, lots of rest. I love those chickens. Chickens are funny. I love to hear the rosters try to out crow each other in the woods in the morning. OH, how I miss you. There are no cell phones allowed in front of anyone.... they will throw you in the lake. No Internet....awesome. They have different retreats but I liked going on a non busy weekend. Every night, we "circle up" before dinner and say where we are from and who we are. Some people say a state, some people say a planet, ha ha. In the circle, we say what we are thankful for. It's so great to hear people say things that are not material or the usual, my kids, my husband, roof over my head, my job, yada yada. It's more like, the eagle I saw at Jekyll island today, the sun on my body while I was sun bathing, the fresh carrot I ate out of the garden, music, dancing, laughter, the chickens, yummy food, not being on a clock, the people, it's very refreshing to me. I'm going to let my friends there know what is going on.... it will take a year or so to reach them all. They are trickle in and out of the place :) I never exchanged numbers or facebooks, just see you again one day my friend. I think that is why I like children and people with developmental disabilities so much. They see the things in the world that busy adults seem to miss and dismiss, because they are too busy. They are too tired and then sit around and watch T.V. because the are too tired or have lost things that really are worthwhile. Stay inside for a long time as I have and the next time you go outside your senses will be overcome and it can bring tears to your eyes. Boy, did I get a retreat this time ;).
Jonathan told me about our friend Wade yesterday. Wade and his oldest daughter are living in GA and the rest of the family is in Canada. Job and school reasons right now but they hope and I believe they will be together again soon. They went to Blood mountain yesterday and hiked it together and she practiced her driving. Wade, you didn't know it was going to be so curvy did you?!! That's going to be a great story! I know she loves her Daddy so much for spending time with her besides T.V. and homework!
I have been recently trying to choose a better story for my immediate family and they seem excited about it. Mom and Dad are going to go hiking together next weekend! We used to do more. Be outside more. My parents have a nice house, a pool, T.V., we all have dogs, a kitchen, nice beds, so it is easy to just stay there all the time on a visit. We used to camping a lot when I was kid and I feel that my brother and sister missed out, ya'll just don't know it. A few weeks ago, we went to Cloudland Canyon to hike. We hiked almost 5 miles with a 3month old, it took and hour and a half to get there, cost $5 dollors to get in, we were tired and hungry, Evalyn did great, the scenery was beautiful, we talked, we laughed, we were so tired it felt good, was it worth it?.... oh yea. It's a great story. Nothing worthwhile is easy.... not even T.V. :) Don't get me wrong, I love a good Cosby show or PBS show. I'm a nerd too, if you didn't figure that out yet.
**Home Churches** Our small group is our home church right now. I know that as Evalyn gets older, we will need to find something more so that she will grow up around other believers. I know God has a plan for that.... maybe it will be a traditional church, maybe not. It will be right because it is God's plan, not mine. The good part about organized churches is the accountability for the leaders not to be able to do anything too hurtful before the are booted out. You have have to have some accountable or people end up moving to Africa and drinking koolaid to kill themselves. So as with most things, there is a fine line, a balance.
I have a family member who has recently mentioned praying to me in the last year or so and has been a big
blessing to us through these hard time.... I feel that they are searching. I pray they find God and peace. Nope, no names.
** The rain **Well that's enough for tonight. Get a snack and try to back to sleep.... wake up with my mask and room service. Tomorrow, it is going to rain all day. I'm going to ask any of my scheduled visitors to stay at home, especially my bro, because people can't drive in rain. When it rains, I do everything in my power not to leave the house unless I get to play in the rain :). Only a scheduled work meeting will me out and I even call the families just to make sure they are not scared of storms and want to reschedule. If someone doesn't mind and lives closer... they can still come if they want. I know you want to see my hair! I'm going to the clinic tomorrow to pick out a wig!! Fun!!!
I hope you all have a wonderful day!
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.
Heather,
ReplyDeleteThank you for sending me the link to your Caringbridge site. You write so beautifully ! I enjoyed my visit with you this morning, and you seem to be doing so well. I pray that you enjoyed your time with your baby and that your spirits were lifted, How blessesd you are to have such a caring family and friends, but most of all, al loving God. Remember He is Jehovah-Rapha- the God who heals!
Love and continuous prayers,
Susan
Susan Hill