I am beginning to sound like a broken record, but I am back in the hospital again…
It is not a pressure sore. It is not an infection. And it's not me getting the latest medical device implanted into my body.
It is pain. Intense, mind numbing,… The kind where you scream out loud and are scared at the horrendous noise that you hear back…it was pain that brought me to the hospital a month ago. But what I am experiencing now is a whole new category of anguish.
If you know me, or have read some of my writing before, you know that I have had terrible nerve pain for years. I have a baclofen pump, a spinal cord stimulator, and I am taking gabapentin, Lyrica, and Cymbalta all for nerve pain. I also have another assortment of painkillers that I can use as well. All of this gets locked away in a safe.
This system was doing OK for the most part. I have had a bad day or two a week, but it almost never kept me away from any sort of event that I wanted or needed to be at. This leads me to last Friday (November 30).
It was a pretty difficult workday. By early afternoon, as I worked at my computer, the backs of my legs and my rectum were on fire. It felt like someone had microwaved a golf ball for 10 minutes and shoved it inside me. This is the type of pain that I've been struggling on and off with for a couple of years. Then, totally unexpectedly, the pressure and heat grew and expanded until the point that it encompassed all of my genitals and most of my thighs.
It was terrifying.
I drove my wheelchair as fast as I could into the elevator. Pressed the up button. The feeling and heat still increasing. I drove my chair towards the bedroom, yelling for Shelly and for the home health care aid who was still there. Never mind the lift... "throw me in bed!"
Reclining brings me relief. Within a half hour, I could catch my breath and my thoughts again. I tried sitting up again Saturday morning - immediate pain. I tried sitting up again Sunday morning - immediate pain. I tried sitting up again Monday morning - staggering pain. I had to go to the ER. (I have not been able to sit up in my wheelchair since then.)
After a rough ambulance ride, I lay on the ER table writhing in agony. Doctors tried different cocktails of IV painkillers… Percocet, Valium, Dilauded, and Fentonyl. They finally got me to a reasonably comfortable state.
With recently being in the hospital with an infection, that's where the doctors automatically want to start… Sepsis. But it is obvious right away that there is no infection. So, for the first time in three trips to the hospital, we finally start to diagnose.
With the fact that my pain is so positional, it seems like it could be some sort of a pinched nerve. But it has nerve pain components and hypersensitivity components. I need an MRI.
But my spinal cord stimulator is so experimental, that it is not MRI compliant yet. I knew this when I was getting it. So… disheartenment. But the doctors have a good alternative, a myelogram, basically a CT Scan with contrast right into my spinal column. And when the scans were complete… a little bit of cramped quarters in some areas of my spinal column, but no pinching. And I was so sure there would be some!
It is so obvious to everyone that there's something wrong with the nerves at the end of my spine. The problem is finding which ones and figuring out what to do with them. Should we shave the bone nearby? Should we kill the nerve? I would personally like to take a knife and cut the bottom several inches of my spinal cord off.
After one very disappointing meeting with a doctor that I've known for 10 years, and after a somewhat encouraging meeting with a doctor that I have known for 2, I feel like we have somewhat of a plan for the next few days, but there is still a lot up in the air. And it is simply not an option for me to lie down for the rest of my life!
Please be praying for us. Pray that we find the right advocate for us. Pray for doctors hands as they perform procedures. Pray for strength for our families as they help to hold down the fort.
As I type from my hospital bed and Shelly sleeps on the (surprisingly comfortable) couch across the room, we feel weak and vulnerable. This is not a new thing for us to feel, but it can be so isolating and so discouraging. We know that he makes beauty from the ashes of our lives (Isaiah 61:3), but the refining process hurts.
God bless you all,
J & S
"Blessed be the God and Father of our Lord Jesus Christ... who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God."
2 Corinthians 1:3-4
It is pain. Intense, mind numbing,… The kind where you scream out loud and are scared at the horrendous noise that you hear back…it was pain that brought me to the hospital a month ago. But what I am experiencing now is a whole new category of anguish.
If you know me, or have read some of my writing before, you know that I have had terrible nerve pain for years. I have a baclofen pump, a spinal cord stimulator, and I am taking gabapentin, Lyrica, and Cymbalta all for nerve pain. I also have another assortment of painkillers that I can use as well. All of this gets locked away in a safe.
This system was doing OK for the most part. I have had a bad day or two a week, but it almost never kept me away from any sort of event that I wanted or needed to be at. This leads me to last Friday (November 30).
It was a pretty difficult workday. By early afternoon, as I worked at my computer, the backs of my legs and my rectum were on fire. It felt like someone had microwaved a golf ball for 10 minutes and shoved it inside me. This is the type of pain that I've been struggling on and off with for a couple of years. Then, totally unexpectedly, the pressure and heat grew and expanded until the point that it encompassed all of my genitals and most of my thighs.
It was terrifying.
I drove my wheelchair as fast as I could into the elevator. Pressed the up button. The feeling and heat still increasing. I drove my chair towards the bedroom, yelling for Shelly and for the home health care aid who was still there. Never mind the lift... "throw me in bed!"
Reclining brings me relief. Within a half hour, I could catch my breath and my thoughts again. I tried sitting up again Saturday morning - immediate pain. I tried sitting up again Sunday morning - immediate pain. I tried sitting up again Monday morning - staggering pain. I had to go to the ER. (I have not been able to sit up in my wheelchair since then.)
After a rough ambulance ride, I lay on the ER table writhing in agony. Doctors tried different cocktails of IV painkillers… Percocet, Valium, Dilauded, and Fentonyl. They finally got me to a reasonably comfortable state.
With recently being in the hospital with an infection, that's where the doctors automatically want to start… Sepsis. But it is obvious right away that there is no infection. So, for the first time in three trips to the hospital, we finally start to diagnose.
With the fact that my pain is so positional, it seems like it could be some sort of a pinched nerve. But it has nerve pain components and hypersensitivity components. I need an MRI.
But my spinal cord stimulator is so experimental, that it is not MRI compliant yet. I knew this when I was getting it. So… disheartenment. But the doctors have a good alternative, a myelogram, basically a CT Scan with contrast right into my spinal column. And when the scans were complete… a little bit of cramped quarters in some areas of my spinal column, but no pinching. And I was so sure there would be some!
It is so obvious to everyone that there's something wrong with the nerves at the end of my spine. The problem is finding which ones and figuring out what to do with them. Should we shave the bone nearby? Should we kill the nerve? I would personally like to take a knife and cut the bottom several inches of my spinal cord off.
After one very disappointing meeting with a doctor that I've known for 10 years, and after a somewhat encouraging meeting with a doctor that I have known for 2, I feel like we have somewhat of a plan for the next few days, but there is still a lot up in the air. And it is simply not an option for me to lie down for the rest of my life!
Please be praying for us. Pray that we find the right advocate for us. Pray for doctors hands as they perform procedures. Pray for strength for our families as they help to hold down the fort.
As I type from my hospital bed and Shelly sleeps on the (surprisingly comfortable) couch across the room, we feel weak and vulnerable. This is not a new thing for us to feel, but it can be so isolating and so discouraging. We know that he makes beauty from the ashes of our lives (Isaiah 61:3), but the refining process hurts.
God bless you all,
J & S
"Blessed be the God and Father of our Lord Jesus Christ... who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God."
2 Corinthians 1:3-4
