Another week of decisions not quite clear--however there have been changes that have been written on my soul. My heart is forever changed and I will never be the same because of these experiences, sometimes I wonder if it better or worse..Mostly because I know when the storms come in my life they seem to rest and stay ever entwined in my heart until I can figure them out on my own. When I say "on my own" all that means is that I have to come to a higher mountain, much higher than the hills I've been climbing. So many times I have been down or in despair but this time is the worse I have ever experienced, and forced me to get my knees calloused as I have begged for answers. Many times I have spent times in my car, crying out loud wondering if I have been abandoned--no answers have come. Earlier this week I received a beautiful note from a young girl who has come to be a 2nd daughter to us. I was so touched by the wisdom she offered it brought me to tears, and it was at that moment, she needed to hear from me as well as me hear from her. I have not been able to get this conversation out of my head--It's words I've told myself over and over again, but somehow when I think them, they don't quite seem the same. I've truly seen and felt the truth of the love our Heavenly Father, he's always there, right there just waiting to see how in tune I am......not quite on the same page this week--but the fact is, I am living proof that modern day miracles happen everyday--he hears every prayer, he knows every struggle--it has to make Him feel sad or disappointed when my complaints come in handfuls. I imagine He thinks, "I've really out done myself with this young lady, she can't even see the possibilities and strength she has" I know this for sure, we can never enjoy the good in our lives unless we have felt of the bad or the trials that life often times brings. We can't enjoy joy without living through some life changing events.
I will never deny what I have felt, and some of the experiences I've had this past few weeks are so sacred to me, I will not share them on this blog, but will keep them sacred in a draft for my children to read--maybe it will redeem myself from my last post--(I cussed) sorry about that--it was real and raw, should of given a disclaimer before you read.
I knew my family including my sisters would be nervous when they read my last post--BTW--I'm not planning on killing myself--just at that very moment-I wished it was me, and I was happy for that lady at Mayo Clinic, don't misunderstand and send me emails as to why I shouldn't write or say what I feel--I am no longer amused nor do I want to be entertained by your negative energy. I'll say it again, please don't read this blog if you are not willing to listen with an open heart--this is not your journey--it's mine--and as the Lord has created us all different we all have different philosophies of how to deal with life changing events--this is my way and I will not apologize for my feelings, and one more thing, I am a Christian woman,who rarely says anything other than what I'm feeling, this does not mean I don't also have to ask for repentance--EVERYDAY--mostly for the uncomfortable feelings I get when I read your emails of criticism. With that being said, let me update on this weeks activities.
I began by getting my records from Mayo Clinic, we picked them up....we as in Frenches my driver. I am going to the Cleveland Clinic for my 2nd opinion, the doctor is renown for his facial paralysis reanimation surgery for people like me--when his office received the first batch of records and pictures, they were amazed at what they saw--Debbie, was friendly and more than helpful, and I do need to insert here my friend Diana Lents is the person who knows how to get this stuff done, not only that but she is a nurse and will be able to give me my infusions in my picc line twice a day. If Cleveland Clinic does not work out with have a connection with a doctor from Baylor and Mayo in Rochester. I insisted on Eric staying home--I can keep him updated--I don't want to put him through anymore than he has to, especially when he needs to work. So now that I have read all of my reports from Mayo, I think I understand a little more of what is going on. A quick synopsis is when I was 3 my eardrum was broken due to a blow to the head, with that trauma came many surgeries as a child. I was told back then I would never get water in my ear--never did--at age 29 I had a mastoidectomy removed. From that point on, I was told some repairs were done and I could not go under water--the first time I swam was in the Hawaiian ocean when I was 30 years old. Skip forward to now, after going through chemo and radiation, mostly the radiation the beams stirred up some weird stuff in my ear. I went a year ago to see Dr. Barr's, he suggested getting the mastoid out and to possibly do the Baja Implant. I refused at that time to do it, just because I was racking up some surgeries at Mayo and at that moment I was not worried about it. Skip now to October of last year, my ear began to drain again I went to see Dr. Barr's it was determined at that point it would not be a good idea for me to wait for surgery--we started on some anti-biotics to see how they may help, on December 10th Dr. Barr's went in and took out the mastoid, at that point he took some skin from my upper arm to create a new eardrum because it was completely blown out too. I took a 2 month leave from work--everything in my ear looked good, it just was not healing like we wanted it to, I was concerned about infection but was told there was no infection and it had been tested by infectious disease. I was also given a neurology appointment and consult--nothing. After a couple of months on antibiotics my ear began to heal, in fact they were extremely happy with the outcome. Still one more surgery on the schedule to get all the debris out and re-evaluate, this surgery was successful but since the doctor in the OR before us went over by 5 hours I had to return for another surgery--even after this one it looked good--Dr. Barr's grafted skin from my upper arm to cover some spots that were beginning to show bone. Now all was good, I had one week to wait for my follow up, Tuesday the night before my appointment, something popped in the back of my head near my skull , an immense pain took over my body,, and not wanting Eric to worry, I went into a different bedroom and hugged a pillow to scream inside it, I crawled back in bed next to Eric around 5, I didn't want him to know anything was wrong. I then drove myself to the Mayo Clinic and was admitted immediately. My face looked like it had palsy, no feeling on the right side, and my speech was off-I also could not raise that eyebrow or smile from the right side. This was on a Wednesday, on Friday I had another surgery--the pictures he showed Eric were nasty--it showed where he had taken more skin to graft around the nerve, but within a few days it had gone gangrene, and partially killing off some of the facial nerves. This is not palsy. Now we are a deciding point, as I visited in length with Dr. Barr's, I didn't like any of his options, and he was open for us to get another opinion, so we are. I realize there is a window of opportunity for nerves, we are asking the family, close friends and now ward and stake members to pray for me and specifically for me to feel peace with whatever decision we decide is best. I want to include all my decisions with the Lord, he has not let me down yet. With the strength of so many people praying I KNOW an answer will come, one that I will more than likely have to accept and forward in faith hoping I can find some peace--My face will never be the same, but it was never perfect before anyway--I'm ready--well I should say I am ready today and hopeful with all the fasting and prayers going out for me--the spirit will strengthen me to another height and again prepare me for what it is the Lord has in store for me, and what I'm learning will help others, even if it gives them a bit of strength to go on for another day, then do it again and again until life becomes a school of learning and a place where they too can pay it forward.
|black dead skin December 10,2013|
|After 1st surgery in December--impressive staples huh?|
|January--looks like infection|
|April 28th Surgery|
|One week after my last surgery, in for a follow up my face has already began to take on a new look.|
THIS IS MY SPECIAL TEXT I RECEIVED THIS WEEK--THANK YOU I NEEDED IT.