FYI... writing this with eyes closed and edited it with one eye open and seeing double...Yes, I did say I was going to update the introduction of the blog because it really needs updating and the blog needs some organization, but I have forgotten how to edit that part and haven't asked for help yet... I also said I would post about all the wonderful things that that happened with beautiful pics and I have acually managed to get them off the camera, which I had to find. But I just watched like 5 episodes of mob wives in the middle of the night, weired because I say I hate shows like that. The music is kinda cool and maybe it made my drama not look so bad. I pretty sure I'm not going to have FBI agents arrest my husband at 5am or knock one of my girlfriends upside the head. That saying... I should be sleeping, but sleep has been even harder the last six months or so because of not being on the med routine I was on, and was working, until I had the whole IV thing start up in November. I'm in pain. What was working thatI felt comfortable with and I could sleep on conteracted with those new meds and so I have been up and down.
I told, and shared some gross pics , in the last medical update, the GVHD attack I had on my skin,, mouth, and eyes, which I am still dealing with. Now I had to start another med for the GVHD which is messing with the last newest med and just has made me feel worse. I'm acually typing with my eyes closed right now because I can't see well enough to type and will have to edit on more sleep. Ha but even my editing needs editing. I just hope I'm keeping my fingers where they need to be so I can read this later.
So the most recent medical news is relatively positive. I'm getting my picc line out this week and have stopped two of the medications that I started in november. Glad to stop the IV drug because it is so bad for me. However, the reason isn't because I don't necessarily need it any more but because there is no protocol for me and we are just making it up as we go. Gosh, I'm such a lab rat. So since the arm infection is better right now, the doc said he was going to talk to someone else and then we would stop. I gave him a week to call back and so I've decided to stop it and the oral med that goes with it and get this damn picc line out of my arm I have been subjected to for the last 7 months. What is another couple weeks going to do except swimming with my sweet daughter and ruining all my fashion ideas since I have to have it covered. FYI, cutting panty hose to cover is less hot, less to match with, as if I should care, and even though you can see through, well at least people don't have to don't have to wonder.
Now I can go back and mes with my meds and hopefully get back on track on getting off of them all. I think I'm pretty much telling the docs the plan and then they are oking it or not. Is it too late to go to medical school because I can go into a medical appt and pretty much tell my driver what the docis going to say and what they are going to do and even give them ideas. Medical school in Costa rica doesn't sound too bad, suely I'd get a job if I survived this and paved the way for others. It's just cheaper outside the country then I'd get more training hrere. Who am I kidding I don't want to spend anymore time in the hospital as possible because when I grow up I'm going to be a professinal artist, dancer, and singer, right?
I have had a lot of pain in my right hip and was so scared that it was going out too, but the doc said no, and added two more diagnoses to my list. Tendinitis in my knees and bursitis in my hips. That makes me feel so old. They also discovered castrates due to the long term use of medication., oh so thats 3 more diagnosis. Got a couple more with critical low calcium and high potassium, but now they say that has stablelized.
Yes, I'm still shedding. not as bad of course but bad enough that I can still just pull some off is you arein the mood to get out the microscope and still thick enough not to be able to get a stray tan without out looking like a new species of of an African animal.
Mentally, I'm a little crazy. Been through a lot with family, deaths, dealing with not being able to drive but being too depressed to do anything that needs to be done, and soooo tired. When I was teaching I thought summers where the best. What was I thinking? Evalyn wore me out so much in the first week out of preschool I spent a whole day in bed, missed so activities, and had to call my in laws to come get her. When I have sleep I have the crazy dreams and so many are from God and are overwhelming. Hey at least we are communicating right?
My poor mouth. Most of the sores are gone but still having issues swallowing, and eating anything that my have been in the same state with something spicey. I love spicey food. But even things that should n't be spices can hurt and then I just don't eat, or eat chocolate. New diagnosis... scizophenic tasted budes. You know they have strawberry whoppers now?
A week after I saw the hip doc and he said what he siad I started having really bad painds in my froin muscle. I'm missing the three times a week PT so it could heal, if it is indeed a pulled muscle. I rested it up and thought it would be fine then bam the pain is back. So now I have to get some more radiation thrown at me to see what's going on. I'm going to put that off this next week.
Also self image is huge, stop eating sweets right heather, thats not the issue with weight going. I have learned over four years that predizone is the weight, not piece of chocolate. Chocolate has saved my life, And I guess the predizone has too. But normal people go through a slow aging process but I just feel so ugly so fast. I'm alive, shouldn't I be thankful instead of pissed that instead of people saying, oh this must be your sister, I have to be introduced. I never got to grow old, I just got old.
Financial stress without know too many details and just feeling the stress from Jonathan was bad enough but now I see that how much of our income and debt is medical bills. I really want to find a job or really set up my epsy site with my art like I have said. People love my hand made recycled jewelry, paintings, prints, etc and have already sold some just in person. I just have to commit to the whole mailing process where they will come pick it up cause for some reason the post office seems so hard, well everything is harder when you can't drive or are too tired. I don't want to sell stuff just to pay off medical bills but also so I don't have to feel bad about doing things for myself that I shouldn't have to feel bad like getting my hair cut or a spray tan. Then I watched too many pawn shows and started thinking of all the stuff I could sell like my vintage Raggity Ann and Andy that
s going for fifty and I got for ten, But I don't want to sell them, I like them. If I start selling stuff like that then there goes my vintage clothing collection and a few other things I really like. I'd think I'd rather eat sandwiches for a month or two... I don't know. Got some stuff to put on craiglist but all that money is suppose to go to big magnolia tree to plant in my Granny's honor at the farm. Anyone own a tree farm? We do and plan little vacations here and there but most are paid for through points from paying medical bills. Yea, I don't think I want to know anymore about medical bills.
Going to Emory next week to get the special breathing treatment and IVIG to help with my immune system but don't have a ride or a sitter yet but pray that all goes well and works. I know that Dr. K wants me to go to Philly sometime soon to see a doc and get a second opinion about doing a stem cell boost, which of course no one has tried on someone like me, cause no one is like me.
Well wanted to put the good and bad out there for you all to pray for. Wish those of you that talk to me about reading to blog would comment so I could remember your pray requests and advice could be part of the blog one day book!
Thank you for your prayers and words of encouragement!
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.