I'm not really sure where to begin and it will probably take me a couple of days to write this since I have some serious short term memory issues and a full time job of a medical coordinator/ advocate for myself. Don't forget the 2.5 year old, although she is probably the only reason I am still on this earth, that girl of min is fast, strong, and way to smart for her own good.
A quick medical update.... guess what..... they don't know. That's right, they don't know. They don't know what these cysts are that are popping up under my skin. They don't know if a hip replacement is going to work since my bone are falling apart, so they don't know if I will need other surguries or be lame forever. They don't know if it would be best to take all my teeth at one time or risk getting something call OMJ if my teeth continue to chip away. It's when your on osteoporosis medication and you have dental work done and can cause problems in your jaw not to mention deformities. They don't know why my body is not adsorbing Vit D and in my spine it is the lowest the specialist in Atlanta has every seen. I guess the good thing is that they are not afraid to say "i don't know.
OK so I just stopped writing this post like a week ago, so if I just change tone, I'm not a schizo, no offense if you are....., at least not yet. It could be on the side effects list of the next med they decide to try me out on a new med. Of course, then I will stop taking all of them. That will show 'em.
Last Friday, I made a hard decision to have all my teeth removed in to eliminate the risk of having dental work later on which according to how bad they were, genetics, treatment, and research, there was a pretty good chance the above mentioned would happen to me. They were literal falling apart and to save them would have cost more money and more pain. So I'm recovering and they said it hurts worse the first day but I'm on the third. I'm awaiting tons of appointments having to with pain to vitimin D shots. You name it, I've had it or got or the stats say I will. I just seem to keep getting lucky enough to be in the 1 percent.
On a good note, I'm also lucky enough to know true love and that is what my sweet husband Jonathan has given me. Toothless, in pain, can't walk, can barely read, can't drive, etc etc. He loves me anyway. The things this man does for me you would not believe. Maybe I'm in the 1 percent there too. They can't say I don't know all they want. But I know , I love you, Jonathan Cape.
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.
Saturday, February 23, 2013
I do believe that I was in the hospital for part of Dec., ah yea, that was went I got my port out and it was suppose to be just an outpatient procedure and it turned into a traumatic 5 day stay because of some malpractice. I still have to take care of some of this and haven't quite decided what I'm going to do about it, but I can't just let it go or it will happen to someone else.
We had a great time at the Zoo with Sarah, Noah, Evalyn, and Amma had a great time at the Zoo. Sarah's step dad was great to drive us there. We also went to Rock City, walking through the lights are a lot of fun and magical.
Anyway, Evalyn was very excited about Christmas this year. We didn't push the whole Santa thing but didn't not acknowledge it either. She is so sweet and giving that when she woke up and saw all her presents she turned and said " Mommy where are your presents." and then proceeded to want to hand out everyone elses gifts. We were so blessed with love over the last year and we had a great we had a great Christmas.
|Sarah and I.... a rare pic since we are chasing afterr two year olds.|
|This Lion was awesome. He went to the highest rock and roared for like 3 or 4 min.|
|They call each other best friends.|
|I love this pic!!|
|She got this during the party game and came home and gave it it me.|
|We went to rock city and the lights were beautiful . Evalyn had her light up shoes on so we could see her!|
|This girl loves her care bears.|