OUR VOICE
The voice of people living with Sickle Cell Disease. Information, education and communication, finally, with our voice.
Wednesday, October 12, 2022
Wednesday, February 14, 2018
AVN - Newest Year New Hip
After this blog post I'm going on vacation. My vacation will consist of renewed focus. I'm not going to talk about pain, surviving Sickle Cell or any of my past comments. After this blog post, I'm going to celebrate every new day, every moment of breath, every hour of life.
In a nut shell; going to surgeon, getting date, have surgery, recover and live.
This time, really live.
Sunday, September 24, 2017
A New Day...Again
September 2017 was supposed to kickoff Sickle Cell Awareness Month by having the "1st Annual Sickle Cell Awareness Event at my ranch. At the time, we were also going to kick-off the birth of Joneswood Foundation, an advocacy, educational and sickle cell awareness organization.
A forest fire ended all of those good intentions.
But what it could NOT destroy was my goal: the birth of Joneswood Foundation. There's still work to be done to advocate and educate the world about Sickle Cell Disease.
So, it is a new day for us at Joneswood Foundation. We will continue the vision and continue the cause: Sickle Cell Disease Advocacy, Education and Awareness.
Wednesday, July 5, 2017
A Do-Over - New Year New Hips
#NewYearNewHips
Infection can be a burden in more ways than one. Always a possibility, "one out of a thousand" as my surgeon told me, I hit the lottery. May 5 was not only Cinco De Mayo, it was the day I got the news. "We're going to have to go back in," after that everything was a blur.
My mind raced through the last month of my supposed recovery. How I got a second chance, how my guardian angel watched over me, and I woke up to the aftermath...recovery. A month after surgery, with a wound that would NOT close, now "they have to go back in", Lord help me!!!!
I never thought to blame anyone, I quickly moved into survival mode. Let's fix it mode.
Looking back now I see it was all Gods plan. I had some personality problems that needed fixing.
- I was an over planner, no one could have planned for this.
- I didn't want to ask for help, I was forced to ask people to help me.
God forced my self-reliance to God-reliance in every aspect of my life.
When I asked God to show me the purpose of this "new" challenge, He showed me myself. The pride, the arrogance, I needed an attitude adjustment. He took me through (still taking me) the Truth where He said, "Humble yourself before the mighty hand of God."
I'm still in training, nowhere near done, but I see the destination...heaven.
Infection can be a burden in more ways than one. Always a possibility, "one out of a thousand" as my surgeon told me, I hit the lottery. May 5 was not only Cinco De Mayo, it was the day I got the news. "We're going to have to go back in," after that everything was a blur.
My mind raced through the last month of my supposed recovery. How I got a second chance, how my guardian angel watched over me, and I woke up to the aftermath...recovery. A month after surgery, with a wound that would NOT close, now "they have to go back in", Lord help me!!!!
I never thought to blame anyone, I quickly moved into survival mode. Let's fix it mode.
Looking back now I see it was all Gods plan. I had some personality problems that needed fixing.
- I was an over planner, no one could have planned for this.
- I didn't want to ask for help, I was forced to ask people to help me.
God forced my self-reliance to God-reliance in every aspect of my life.
When I asked God to show me the purpose of this "new" challenge, He showed me myself. The pride, the arrogance, I needed an attitude adjustment. He took me through (still taking me) the Truth where He said, "Humble yourself before the mighty hand of God."
I'm still in training, nowhere near done, but I see the destination...heaven.
Thursday, April 27, 2017
Second Chance- New Year New Hips
My #NewYearNewHip
Having lost my mother-in-law two days before surgery
both my husband and I were numb. We were going through the motions like robots, not
feeling our loss, not feeling anything.
In the pre-op waiting room, the nurse who was
preparing me turned the television on and I saw something, I don't remember
what, but it reminded me of my mother-in-law and I started to cry. I was mourning
my mother-in-law's loss right there in the pre-op nurses’ station.
For the first time, I assumed I saw God’s plan. I
believed that my mother-in-law was assigned to me as a guardian angel to carry
me emotionally through the surgery and to help remove any pain, any sorrow, any
fear that I felt. I believed she was acting in behalf of God for me and I felt
her presence. At that moment, I felt safe.
Seeing tears and hearing of my mother-in-law's loss, the nurse tried to comfort me. She offered a reassuring hug and her
condolences for my loss. But this moment was between me and God. My
mother-in-law loved the Lord and I knew she was in heaven.
My daughter Christina came into the room afterword
and offered comforting words. I told her that I felt my mother-in-law was
looking over me, protecting me. Christina
knows my faith, so she didn’t doubt that I felt I would be OK.
Then, my husband Rick came back into the room and I
told him what I thought. He, being still numb from losing his mom one day and
being here with me the next, it didn't register to him. He didn’t know my hidden
fear which was right under the surface of my strong fearless exterior. He
didn't understand because it was between me and God, as well.
Everything after that was a blur.
I remember them wheeling to me into the operating
room, I remember the anesthesiologist standing over me asking me to think of
someplace beautiful to which my response was "heaven", because part
of me did not want to wake-up. I did not want to survive and deal with the
repercussions of the aftercare conditions. Part of me wanted to unplug and die.
But my anesthesiologist his response was no we're not
going to heaven yet think of a beautiful place where you want to go and when I
put my mind to that focus I inhaled once twice and then I went into darkness.
Waking up after surgery caught me by surprise. For
one thing I couldn't believe that I went through with it. Previously, I was on
auto-pilot preparing for surgery. I had so much to do to prepare, I
intentionally focused on my list of things-to-do and did not allow myself to
think about the aftermath.
I don't even remember the sound of the heart monitor beeping
or oxygen tanks filling, which I've heard before when I’ve had surgeries. I
just remember being awake and thinking to myself, ‘I survived.’
I remember thinking that my mother-in-law watched over it all. And,
I remember thanking God for not hearing my prayers “to take me to heaven.”
I remember my husband waiting for me to wake-up and when I opened
my eyes he was the first person I saw.
Thank You Jesus for a second chance.
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