I feel as if my heart has broken
and I am stuck in a night
long, dark and forever
Your tears flow as if
rivers and floods
You try to hang onto the music
or hang onto me
but the pain is now
relentless and hunting
Finally you fall asleep
In the end exhaustion wins
Another victory over
the terrors in the night
But somehow I dont feel
too victorious
I pray you sleep and rest
and the day is long and slow
and the night never comes.
We are back to square one.
Doctors can be so cruel and so mean.
If you have read much of this blog at all you know that LInda has serious back problems and is in need of surgery real bad. More and more each day it impacts her and limits what she can do. The nights have become torture. She tells me the pain is worse than being in labor and she is there basically all the time.
Surgery was scheduled last Thursday. On Wednesday she was at the hospital doing preregistration and had a seizure. The doctor canceled the surgery.
We went to see her neurologist as he asked. Linda has had 2 grand mal seizures in the last 3 weeks. For her that is a miracle. Given the level of pain, the lack of sleep, the stress that is simply a miracle. The neurologist said that if Linda would take another med for a month he would write something clearing her for surgery. We agreed. Didnt like it but agreed because he held the keys and we were basically his prisoner.
This past week things got much worse. Her legs got progressively number. She started to experience severe pelvic pain. On Thursday she called her primary care physician. Friday morning he called back and said run dont walk to the nearest emergency room. Her symptoms could he thought be an indication of things getting dangerously worse.
We spent Friday morning in the ER. They did another MRI and it appeared she would be admitted. They called the surgeon who said to hold off, nothing would be done over the weekend and that he would see her Monday to talk about scheduling surgery. I talked to the neurologist who said he no longer had any problems with the surgery although he could not guarantee she would not have a seizure. He said he would tell the surgeon.
We thought it was over with.
We were wrong.
When the surgeon walked in the room on Monday afternoon he immediately began to verbally attack Linda. He told her she needed to “stop the dramatics” and that if she went to the ER again he would discharge her as a patient. I tried to explain that her doctor had told her to come but he wouldnt even listen to any of that. He said the neurologist had not talked to him. I later found out that was not so. His staff had dropped the ball and not told him. He told Linda “even if you became paralyzed I could not help you.” I asked him what she was supposed to do if things got worse. He said “find another doctor.” He threw us out of his office.
I walked out screaming as loud as I can. And wondering what you do when your doctor assaults you.
He is fired. We are trying to find another doctor but not many neurosurgeons take TennCare. At best it will probably be another 30-45 days.
We are at square one again. I have met so many people in the last years who tell me that their greatest problem was not the illness or pain they had, but the people and system that tried to cure it. People with epilepsy have surgery every day. It has been true for Linda and every other person with epilepsy I have ever known. Devastated doesnt begin to describe how I feel. I dont know of a word strong enough to describe how she feels.
Last night the pain came again redoubled. I really wish this day would last forever and tonight never come.
I feel as if my heart has broken
and I am stuck in a night
long, dark and forever
Your tears flow as if
rivers and floods
You try to hang onto the music
or hang onto me
but the pain is now
relentless and hunting
Finally you fall asleep
In the end exhaustion wins
Another victory over
the terrors in the night
But somehow I dont feel
too victorious
I pray you sleep and rest
and the day is long and slow
and the night never comes.
We are back to square one.
Doctors can be so cruel and so mean.
If you have read much of this blog at all you know that LInda has serious back problems and is in need of surgery real bad. More and more each day it impacts her and limits what she can do. The nights have become torture. She tells me the pain is worse than being in labor and she is there basically all the time.
Surgery was scheduled last Thursday. On Wednesday she was at the hospital doing preregistration and had a seizure. The doctor canceled the surgery.
We went to see her neurologist as he asked. Linda has had 2 grand mal seizures in the last 3 weeks. For her that is a miracle. Given the level of pain, the lack of sleep, the stress that is simply a miracle. The neurologist said that if Linda would take another med for a month he would write something clearing her for surgery. We agreed. Didnt like it but agreed because he held the keys and we were basically his prisoner.
This past week things got much worse. Her legs got progressively number. She started to experience severe pelvic pain. On Thursday she called her primary care physician. Friday morning he called back and said run dont walk to the nearest emergency room. Her symptoms could he thought be an indication of things getting dangerously worse.
We spent Friday morning in the ER. They did another MRI and it appeared she would be admitted. They called the surgeon who said to hold off, nothing would be done over the weekend and that he would see her Monday to talk about scheduling surgery. I talked to the neurologist who said he no longer had any problems with the surgery although he could not guarantee she would not have a seizure. He said he would tell the surgeon.
We thought it was over with.
We were wrong.
When the surgeon walked in the room on Monday afternoon he immediately began to verbally attack Linda. He told her she needed to “stop the dramatics” and that if she went to the ER again he would discharge her as a patient. I tried to explain that her doctor had told her to come but he wouldnt even listen to any of that. He said the neurologist had not talked to him. I later found out that was not so. His staff had dropped the ball and not told him. He told Linda “even if you became paralyzed I could not help you.” I asked him what she was supposed to do if things got worse. He said “find another doctor.” He threw us out of his office.
I walked out screaming as loud as I can. And wondering what you do when your doctor assaults you.
He is fired. We are trying to find another doctor but not many neurosurgeons take TennCare. At best it will probably be another 30-45 days.
We are at square one again. I have met so many people in the last years who tell me that their greatest problem was not the illness or pain they had, but the people and system that tried to cure it. People with epilepsy have surgery every day. It has been true for Linda and every other person with epilepsy I have ever known. Devastated doesnt begin to describe how I feel. I dont know of a word strong enough to describe how she feels.
Last night the pain came again redoubled. I really wish this day would last forever and tonight never come.