Hey everyone. I hope all is well. I am writing with a bit of a different mood today, but I hope that by sharing I can help others out there going through the same. You're not alone...
Since the beginning of this whole thing I have tried to keep positive...find the good in every bad situation. It almost seemed to come naturally. Being positive is just who I am. It's just how I felt. It was how I got through the first two leukemia rounds and a bone marrow transplant.
Enter numerous infections (including meningitis which damaged my cognition and memory and put me in a coma) and GBS. It has truly been a fight. For a long time. One I am still fighting. I am learning to walk and use my hands again which is going well. But lately my emotional state seems to be changing toward the negative despite my best efforts to keep it positive. I don't like this.It's not me.
I cry so easily now. I've had dreams in which I am playing and chasing Lillia and walking. Every time I fall and wake up crying. I feel this agitation and anger and resentment at this beast who doesn't exist.No one to vent to or attack back, and I'm not sure it would help for more than a minute if I did. I find myself looking at pictures of our family before the leukemia and it makes me so sad...one in particular of Lillia and I. We look so happy with the biggest smiles. And instead of enjoying such a beautiful picture, all I feel is this longing to warn them of things to come and protect them. I want to say I'm so sorry to the little girl and the amazing man behind the camera. But I can't make it o.k.
It's on me now to make this better.I have to take control of my own thoughts. Part of this is getting all of this out there. I am also going to be talking with a nurse specialist in this area that can give me the tools to get back to the real me.
Thanks for reading. Love to you all...~H
Monday, June 30, 2014
Sunday, March 30, 2014
Home Sweet Home
After much prodding from my husband, I am back on the blog. I didn't feel much like writing because well...let's just say I have a lot to update.
In November, I started losing strength in my legs and my cognition was starting to degrade. By December, it was at it's worst and I went into the hospital. I had meningitis. I was later diagnosed with Guillae Boron (GBS). a neuromuscular disease that effects the nerves and muscles and weakens the body. In Jan., my O2 dropped drastically. They put me on a mask and took me to the ICU.
In the ICU, I went into a coma. I had histoplasmosis-a lung infection, and a clot in my lung. Also pneumonia so my lungs were a mess. They put me on a nasal tube,and a ventilator. The Dr. told my husband I may not make it. He was wrong. When I woke up, my cognition was really bad. I had terrible,vivid dreams that I thought were real and couldn't tell the differences between reality and visions I was having. I developed adenovirus and other infections.
I finally started getting better and moved out of the ICU in late Jan. However the GBS had taken over and I was so weak I couldn't move. By late Feb I was able to it on the side of the bed and then moved to Dodd-a PT rehab facility for a little over a month.I owe them all of my mobility. I am home now finaly after facing my own version of hell reaping my own version of heaven-my family. Throughout all of this I have never forgot how lucky I am. I am breathing and i have the ability to keep fighting- I sure will. Out patient PT/OT starts Friday. Time to kick some ass ;)
In November, I started losing strength in my legs and my cognition was starting to degrade. By December, it was at it's worst and I went into the hospital. I had meningitis. I was later diagnosed with Guillae Boron (GBS). a neuromuscular disease that effects the nerves and muscles and weakens the body. In Jan., my O2 dropped drastically. They put me on a mask and took me to the ICU.
In the ICU, I went into a coma. I had histoplasmosis-a lung infection, and a clot in my lung. Also pneumonia so my lungs were a mess. They put me on a nasal tube,and a ventilator. The Dr. told my husband I may not make it. He was wrong. When I woke up, my cognition was really bad. I had terrible,vivid dreams that I thought were real and couldn't tell the differences between reality and visions I was having. I developed adenovirus and other infections.
I finally started getting better and moved out of the ICU in late Jan. However the GBS had taken over and I was so weak I couldn't move. By late Feb I was able to it on the side of the bed and then moved to Dodd-a PT rehab facility for a little over a month.I owe them all of my mobility. I am home now finaly after facing my own version of hell reaping my own version of heaven-my family. Throughout all of this I have never forgot how lucky I am. I am breathing and i have the ability to keep fighting- I sure will. Out patient PT/OT starts Friday. Time to kick some ass ;)
Subscribe to:
Comments (Atom)