It's been a long time since I have wrote a blog. I have several excuses such as not being able to stare at a computer for a long time, not having much feeling in my right two fingers, adding more and more doctors to my lists, changes in medicines, surgeries, and just living life more and more. In truth though I think it has been more about my emotional state over the last year. I always try to blog when I'm in a more or less positive or at least neutral mood, but it seemed like every time I would think of writing something else would come along and knock me down making me not want to share the bad with good. I have always aimed to be as transparent in my writing even more so now that I know how many people from all over the world have read and been helped by my blog. I also felt and still do feel alone in my condition. Not that I would expect or want someone to go through as much as I have and still be living, but as humans we find comfort the most from others who have have empathy and not only sympathy. By feeling this way and not feeling comfortable with my usual long rants with misspelling and lots of dots, I avoided the thing that helped me the most, writing and sharing my story, being there as a support for others going through a BMT and beyond, sharing how the Lord continues to lead and guide me, and getting more people aware that signing up to be a bone marrow donor does not mean they are going to actually cut you open to get it.
I have been just strong enough, subborn enough, and helped enough for me to be able to enjoy so many experiences over the last year. See I knew this right total hip replacement was going to have to happen sooner or later to be able to live my life, I just had to jump through some hoops to get it approved. The surgery is today and after all I have been through you would think it would be a walk in the park and a year ago I probably would not be feeling this way. I am glad that I have not had to be inpatient for more than a day or two at a time. I got so used to regular hospital stays, I had it down to an art, with even a checklist my husband made.
The hoops I had to jump through was getting my eye better, they are somewhat but have a lot of issues with vision and had a failed cataract surgery but they made drops from my blood, weird, and that has helped with the burning. I also had to get surgery on my ulna nerved which proved to be a more difficult recovery than I thought so the left one is on hold for now. I had my big GVHD (graft versus host disease) last Feb and still recovering from it with continued skin issues, eyes, but my mouth is better and good thing cause I have to get used to my new teeth. I'm doing great with the top but not really the bottom. The experiences that I have been able to enjoy have been vital to my state of mind. Concerts,being in my sisters wedding church, yoga, seeing friends and family, being able to do a little more for myself, the joy I get from having the most wonderful dogs, traveling to Gatlinburg with Jonathan's family, birthday parties, and amazing trip to Sea World and Disney World over Christmas, unforgettable trip with Evalyn to the hostel, seeing my cuz on his break from boot camp, being with Jonathan and Evalyn, people blessing us in so many ways, from rides, sewing, dog care, food, love, support, prayers and much more. But the thing that has held me together and continues to give me hope in my faith.
As my hip become worse and I spent more and more time not being able to do anything but talk on phone (which I don't like very much) and listening to sermons online, and praying more than I ever have in my life. I shared with my small group that being in this state I have really been able to fill my cup with the love of the Lord and know that he has a plan to use the continued overflow to help others. But in the meantime and in the thick of it I went though some very depressing times, and medication changes and at one point given false hope that I could be on a medication that would help me get off the steroids, Evalyn being at school all day, not being able to do house work due to pain, risk of falling, or chronic fatigue, not being able to exercise to help the fatigue, and just dealing with the crap like paperwork that keeps having to be filled out over and over, and honestly difficult times that are too personal tor the world to read just year, all of this together I believe could have made me bitter, more depressed, and at one time I just wanted to give up. Hitting wall after wall, breaking my first bone, my toe, itching all the time, side effects of meds, all I have been though, who would judged me for wanting to right? Luckily I made the choice that I have come this far and needed to seek God. Not being able to read or get on the computer much, I found listening to online sermons.
As a family we kinda have three different churches, our small group that we have been in for five years, the Vineyard where we have met the most wonderful people who I love so much, not just because of all the support, but who they are. The people have been so sweet and caring and for once in a long time I realized there where still Jesus followers that really followed him and served others and not just for show. I still have a lot of healing to do with some of my bad church experiences, which leads me too the online messages I listen to the most and they actually have messages called "My bad church experience" Then there is Athens Church, an partner church of North Point Community Church, where I love the organization, the style of teaching , and possible small groups that we may look into.So as I said not being able to do much but lay here, I started listening to messages off of the Vineyard site as well as North Point and all their partner churches. I found myself craving more and more of the word of God and messages that inspire, teach, and for goodness sake interesting, non judgmental, as well as transparency from the speakers. This may sound awful, but i grew up in church from eight years old and up and if I could just walk up and give a sermon on the chosen topic and verses just as well as the person speaker, well I hate to say it, but I feel like it is a waste of time. Not judging or saying others are not enjoying it, just not for me. I despise waste, and wasting time is my least favorite, especially with all I have been through, but everyone should live like they would if they knew they could die at anytime. It takes so much time and effort for me to go anywhere and know I'm going to pay for it the next day I have to choose wisely. I love how adding history, being explained the Greek words and thoughts that have been lost in translation, real people sharing life together for better or for worse, and feeling for sure that who ever is speaking has searched, worked, and prayed over the message, and share personal stories that many times are hidden in fear of judgment and keeping up the appearance that when you trust in the Lord, you life with suddenly be perfect and bad things wont happen to good people. Well we all know that is not true and the biggest reason why I feel that after seeing so many leaders fail, hypocrites that have too much pride to ask for help, and those that are asked either say they will or dont, or don't do it out of love for the person. Church, real church, the way Jesus intended, should be first, a group of believers, not just a place, where people can come in their most broken state and not feel they have to "get there act together" before someone will be willing to show the love of the Lord with patience, not trying to force feed the ABC's of accepting Christ. The bible says we work out our salvation, so many people have prayed the little magic prayer and then left alone to feel that for some reason the magic didn't work for them, and then they leave the church, and I hate to say it, didn't seem to be missed, cause most churches want there people to keep it together. Ok.. I could soap box that one for a while. I don't have much time today cause I got to pack and go to Atlanta to spend the night and I'm going to eat with family and then ride the ferris wheel downtown, which is one of thing on my increasing bucket list, everyone should have one. So back to the point.
I came upon a series of messages from the church North Point called "In the Meantime" which has really helped me to deal with the "why me" the "what if:" and "what now" that at some point everyone asked. It's always seem that God had a purpose through my Cancer and recovery because I naturally love to talk to people and seemed to have something about me that people want to share how they feel, even when I didn't want to hear, ha ha. I know that Lord has lead me though hell and back and back a few more times, but there I was able to rise above to help spead the word about people becoming a bone marrow donor, raised money, met wonderful people that I would have never known and not to mention all the changes in myself. I listened to the eight messages three times... yes I do have short term memory loss, but I just had to digest every word of it. I went on to listen to other sermons and even ones that inspired me to rethink how I felt about the old testament. No longer did it not bore me, it was interesting, and useful to apply to my life.
I have a mountain to clime right now. To get through this surgery and the long and painful recovery and seeking what the Lord has for me on the other side. And that is where some fear comes in... I have gotten my hopes up so many times that I could do the things I wanted and needed to do only to have to deal with something else. There is so much I want to do, to be a part or, to help others, be a better wife and mother, and give God the glory for it all.
Due to common risks with surgeries I just have to say that if I don't wake up for some reasons words cannot describe the how much I am blessed to have had so many opportunities, knowing love on certain levels, choosing to be a follower of Christ and I do expect all of you that been there for us to continue to be. We are so lucky so have so much family and friends and I couldn't even name them for fear I would miss someone.
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.