Mind you, I do need to update the start of this blog, as things have changed, and new events have occurred. For example, I no longer have a booth anymore but do intend to set up a site at some point. I do hope to do something with myself in the area of bringing home some money and enjoying art and music again. I'm super sad, mad, and very tired.. that really shouldn't be an excuse for grammar or spelling for me but sound like a good one for today
Well on to the point. As negative as it sounds, please know my chin is up and I know I'm lucky, however if something happens at the same time for 3 years in a row, anyone would be a little nervous. Three years ago today I was rushed to Emory in horrible pain and shut up in room 601 and suddenly had spinal taps, huge needles in my bones, and wonderful aunts fighting for pain meds, and away from my 4 month old baby. Seems like a life time away and definitely a different person. I think I'm a better person. I'm glad to not have passed on, as I was beginning to think I might the the 3, in the " they come in three" saying. What I have is a very rare infection called mycobacterium chelonae, google it if you must, but I prefer not to know anything else about it at this point. One can only handle so much. This horrible rash is painful, itchy, and very ugly and it all goes back to when I had my port taken out, without the call to order and without any numbing, due to it being put in wrong, and the malpracticing wound care lady, whom I shall know the name of when my medical records get here, did not following or bother to read the order of how to take care of the wound, leading to the first infection... almost a year ago. Do I want revenge, not really. I'd say compensation... gas, time, nightmares, medical supplies, medication that is horrible for my kidneys and hearing (weird), pain, distrust, scars, and possibly my life. The least I can do for my family and for myself is to keep up the fight, not only against cancer, but for self advocacy. Anyhow, I got my fourth picc/port but this time it's on the inside of my left arm and covered with an itchy netted sleeve thing. Back to flushing every night, taste of saline, home health, ordering medical supplies that insurance doesn't cover, more doctors appointments, more blaring bad news on the T.v. at the doctors office,changing dressings, weekly blood work , and have to get a hearing doctor, etc. At least when it's in my chest I can hide it. My new plus size model career is over, not that I was banking on it. Geez, it's like cancer 101 all over again. So I guess the prayer for me would be to have a good attitude, not look in too many mirrors, take ALL my medicines, IV each day, shots, drops, mists, and inhalants and try to go about my merry business of living and living abundantly. I been at this too long to question God really, or fate, or myself. I'm still here for a reason and if I can focus my will on the task at hand I know I can continue to do the Lord's will. That saying, as my cousin said, I can still be pissed off. Would I choose this, no. Do I trust God has a plan, YES. I'm just going to hold on to that. There.
Enough about me. More importantly, there are many people who are hurting because they have lost loves ones this week. According to the news this morning and facebook this week, a lot more than the ones I'm mentioning below. (Thinking of you April) Jonathan's coworker and the person that hired him passed away suddenly. Then a dear neighbor of ours passed Monday. Closer to our heart, our dear uncle passed today. He was diagnosed soon after I was and never in my dreams did I think he would go first. He was always so strong and positive and would come and see me when he could at Emory. Always positive and the memory of his smile and his positive energy will continue to give me hope. Please pray for us and Jonathan's huge family during this very difficult time. May I be a light of hope to others during my treatments as he was to me and others. I smile thinking of him now. He even wants a party instead of a funeral... my kinda man and a handsome one too, if I do say so myself. You will be missed and I'll drink to ya.
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.