May 24
Today I visited the Oncologist again. I had an appointment also last Thursday.
I renewed my prescriptions. I had planned on canceling all pain medication, as I had not used any in months.
Then the weekend happened. I had terrible PLP. It felt like my left foot (the missing one) was nailed to the floor. I took more pain pills on Saturday and Sunday than I have this year total.
I don't know the cause of the PLP, and am afraid it might return. Today I got a prescription for more pain pills.
I also got my normal Celebrex and Avodart prescriptions.
We decided to have the open sores behind my ears removed and sent for testing. I don't think they are Angiosarcoma, but I do know that AS likes the scalp, and likes areas of the body that are stressed. These sores fit both of those possibilities. I see a surgeon on Monday. She will look at them.
That skin is very thin behind the ears on that bony part. I don't know how to remove a sore from there. I bet it will hurt, and I'll wish I had more pain pills.
The good thing is I'll stop having blood on my pillows in the mornings. I have been wrapping gauze around my head, and then wearing a balaclava over that to keep the blood off the linen.
We decided to go ahead and start the PET scan procedure. So today the Oncologist ordered the PET scan. Next will be Medical aid approval, then the ordering of the radioactive goo that goes into me, then the PET scan place will call and make sure I stick to a strict diet before the scan.
My prosthesist is building a new socket for me. This one is way too big, and I shove lots of foam between my stump and the socket every day. As my stump shrinks, the foam moves around and some comes out the top and some collects at the bottom.
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May 29 2017
I just visited the surgeon. She looked at the sores behind my ears, and she said they should be removed and sent for lab tests. I asked her what she thought it was. She said it was probably basil cell cancer, and not malignant.
I asked when she thinks would be a good time to schedule surgery, and she said " Tomorrow morning."
She said that I would be the first operation scheduled, so should be back in the ward, recovering by about 9:30. If all goes well with the anesthetic, I should be released by noon. I shouldn't drive for 24 hours after the surgery, as it will be a general anesthetic.
My release would be on the condition that someone was there to drive me home.
At home I found my main computer to be "unresponsive". I suspect the CPU temp is to high. Probably needs cleaning of the cooling fans.
-------
May 30 2017
I'm just back from the hospital after the surgery.
The hospital suggested that I only use crutches, instead of the prosthesis on the day of surgery, so it won't get stolen while I am in theater.
My buddy offered to collect me after I am released, but asking him to be at the hospital by 06:00 to drop me off, was to much to ask. So I drove myself there, and planned on driving back after I felt good enough, hopefully before dark.
I went into the theater at 07:00 and woke up about 10:00. I was very groggy. They say there are a few conditions set by the doctor, that were necessary for my release.
I had to eat a meal, pee at least half a liter, and have someone collect me in the ward.
I ate breakfast, but was still drowsy, and fell asleep. I woke up just in time for lunch. I then peed the required 500 ml.
I then fell asleep again, and only woke around 13:30.
They said I could leave as soon as my driver arrived. I told them I wanted a cup of good coffee and a piece of chocolate cake while my buddy was driving to get me. So they released me to go sit in the cafe until my "fictitious driver" collected me.
I drank coffee and had some more lunch. I still did not feel 100%, so I had another cup.
I finally felt better at 15:30, and I drove home. No problems.
Now I sit at home with pain behind both ears. Pain behind ears is not a very "noble, or dignified" pain. But then I guess having pain in a missing foot also isn't a pain to be "proud" of.
The Doctor was going to prescribe pain pills, but said that the pills I already have are much stronger than anything she would prescribe for my newest, aches. I will now take a few pain pills, and see if I can sleep.
The bandages will make any laying on my side a bad thing, as it will put pressure on the stitches. I think I'll just sit up all night for a few nights.
-------
May 31
I slept ok, sitting up right all night. The pain pills work very well on real (versus phantom) pain.
I think today will be a sit in the wheelchair day. My head hurts. But compared to PLP, this pain is easy.
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-------------------
Showing posts with label pain. Show all posts
Showing posts with label pain. Show all posts
Wednesday, 31 May 2017
Monday, 18 July 2016
July 18 2016 - Another fall, and another pain.
10:30
From a chilly George.
It is a beautiful, clear day out side.
Maddie is hanging laundry.
I am drugged up and stupid.
Yesterday I wanted to make coffee and help Maddie get ready for church. We set the alarm for 7, but at 6 I had to pee. So I decided to crutch to the toilet. The light switch is up on the wall, and with crutches is a pain in the ass, and I didn't want to wake Maddie, so I crutched in the dark.
I made it up the steps to the dressing room. While crutching to the bathroom I went to move the crutches forward to put weight on them before moving my good foot forward. But it was like the crutches never got to the ground. I felt like I was falling forward down steps, and the crutches were only hitting air.
Then the back of my head hit the closet doors, and I landed hard on my tailbone. Shock and back pain. I cried out and woke Maddie. I had been falling backwards while thinking I was falling forward.
The pain in my lower back was intense. I just laid there moaning. Thankfully Maddie did not try and move me. She did good. Laying on my back on the floor just happens to be the best thing for lower back pain, and I was in that position already. Maddie brought some blankets, and a pillow, and left me alone. About an hour later she wanted to get me back down the stairs to the bedroom, but first up into the wheelchair. She brought a strong kitchen chair, and I was able to crawl up it into the wheel chair, but sitting hurt my back to much, and I fell/crawled back onto the floor.
Maddie brought my pills, and quickly made an omelet, and I took pain, anti-inflamatories, and muscle relaxers. I ate the omelet laying on the dressing room floor.
I then dragged myself down the stairs, and again using the kitchen chair, was able to get into bed. It was late afternoon before I could move and sit up. I took my drug cocktail every 4 hours.
Today I am able to sit in the wheelchair, but I must sit still, and sit straight up.
I dread thinking about driving back to Pretoria in a weeks time.
Shame, Maddie wants to go to the Botanical gardens, and maybe a movie. I want to be safe in bed or the wheelchair. I read about some amputee veteran from Afganistan that had lots of falls on crutches and with his prosthetic leg. He says he has the choice of a semi normal life with his prosthesis, or a zero pain life by staying in his wheel chair. He chose the wheel chair, with occasional use of the prosthesis.
There is much advantage to a low pain, no falling lifestyle. My desire for a pain free existence is becoming more important than a traveling, socializing, or going out of the house.
I am becoming a hermit.
--
From a chilly George.
It is a beautiful, clear day out side.
Maddie is hanging laundry.
I am drugged up and stupid.
Yesterday I wanted to make coffee and help Maddie get ready for church. We set the alarm for 7, but at 6 I had to pee. So I decided to crutch to the toilet. The light switch is up on the wall, and with crutches is a pain in the ass, and I didn't want to wake Maddie, so I crutched in the dark.
I made it up the steps to the dressing room. While crutching to the bathroom I went to move the crutches forward to put weight on them before moving my good foot forward. But it was like the crutches never got to the ground. I felt like I was falling forward down steps, and the crutches were only hitting air.
Then the back of my head hit the closet doors, and I landed hard on my tailbone. Shock and back pain. I cried out and woke Maddie. I had been falling backwards while thinking I was falling forward.
The pain in my lower back was intense. I just laid there moaning. Thankfully Maddie did not try and move me. She did good. Laying on my back on the floor just happens to be the best thing for lower back pain, and I was in that position already. Maddie brought some blankets, and a pillow, and left me alone. About an hour later she wanted to get me back down the stairs to the bedroom, but first up into the wheelchair. She brought a strong kitchen chair, and I was able to crawl up it into the wheel chair, but sitting hurt my back to much, and I fell/crawled back onto the floor.
Maddie brought my pills, and quickly made an omelet, and I took pain, anti-inflamatories, and muscle relaxers. I ate the omelet laying on the dressing room floor.
I then dragged myself down the stairs, and again using the kitchen chair, was able to get into bed. It was late afternoon before I could move and sit up. I took my drug cocktail every 4 hours.
Today I am able to sit in the wheelchair, but I must sit still, and sit straight up.
I dread thinking about driving back to Pretoria in a weeks time.
Shame, Maddie wants to go to the Botanical gardens, and maybe a movie. I want to be safe in bed or the wheelchair. I read about some amputee veteran from Afganistan that had lots of falls on crutches and with his prosthetic leg. He says he has the choice of a semi normal life with his prosthesis, or a zero pain life by staying in his wheel chair. He chose the wheel chair, with occasional use of the prosthesis.
There is much advantage to a low pain, no falling lifestyle. My desire for a pain free existence is becoming more important than a traveling, socializing, or going out of the house.
I am becoming a hermit.
--
Monday, 2 May 2016
May 2 2016 - Less Lyrica, More PLP
01:00
Whew... what pain! My stump is jumping around. LOTS of PLP. I was in bed at 10:30. But wide awake by midnight. I am drinking Horlics and listening to LOUD music. I only got 2 hours sleep last night, and I am so tired and sleepy. It looks like tonight will be about 2 hours sleep also.
This sucks. It is so hard sometimes, to remember why I allow this to continue.
Surely this can not be part of some "bigger plan".
Cutting back on the Lyrica and Cymgen makes my brain more of my own now, than for many past months. But at what cost? I just took my first Robaxin ( muscle relaxer ) in about a month. I also just took another Tramacet pain killer.
I fear a Lyrica and Cymgen is what I really need, but I am doing so well getting off them, I don't want to screw up the good brain. So I take opioids? Duh! Who am I kidding?
It is cold today. Yesterday morning was 8 C. ( 46 F ) Winter is coming.
I sit here in long johns, fluffy sock, and a balaclava.
I just bought online R300 data airtime for my internet. I bought R300 a few days ago, but had to download lots to try to get my project up and running.
My new project is to make some parts of my house to be voice controlled. Like turning on lights and fans with voice only. I am using an Arduino. I can program the Arduino using my Linux computer, but the voice programming library is a windows only trick. Nothing in my house runs windows.
So I am having to visualize Windows XP in my Linux desktop. I really battled because there is not a lot of support for XP anymore. Yesterday my computer power supply quit, and I had to buy another and replace it. But a whole day finally got XP with Service Pack 3 running in a virtual machine.
Next was to load all the Arduino libraries, example code, and IDE. (Integrated Development Environment)
All that was about 2.5 G of downloads.
There are many tutorials on the internet. But they all assume that I know what I am doing. That is not always the case.
My next task was to get the USB port working on the Virtual machine. That was a convoluted process.
The Arduino is programmed via the USB port.
My next mission will be to make the Arduino listen to me talk. It knows 24 preselected words, but can also learn another 32.
My good leg is swollen, dry, red, and itchy. I just rubbed Volaren on it.
In April I walked 24km. This week I have walked to the local shops 3 times. It is 1.8 km there and back. Not a long walk, but it does get me out of the house. Putting on the leg is a pain in the ass compared with zooming around the house in the wheelchair. I am becoming a house hermit.
--
03:30
I am not hungry, but that Robaxin will tear up my stomach if I don't take it with enough food. So I am eating a peanut butter and jelly sandwich. That will fatten me up some.
"Does anyone know, where the love of God goes,
when the pain, turns the minutes, to hours."
Whew... what pain! My stump is jumping around. LOTS of PLP. I was in bed at 10:30. But wide awake by midnight. I am drinking Horlics and listening to LOUD music. I only got 2 hours sleep last night, and I am so tired and sleepy. It looks like tonight will be about 2 hours sleep also.
This sucks. It is so hard sometimes, to remember why I allow this to continue.
Surely this can not be part of some "bigger plan".
Cutting back on the Lyrica and Cymgen makes my brain more of my own now, than for many past months. But at what cost? I just took my first Robaxin ( muscle relaxer ) in about a month. I also just took another Tramacet pain killer.
I fear a Lyrica and Cymgen is what I really need, but I am doing so well getting off them, I don't want to screw up the good brain. So I take opioids? Duh! Who am I kidding?
It is cold today. Yesterday morning was 8 C. ( 46 F ) Winter is coming.
I sit here in long johns, fluffy sock, and a balaclava.
I just bought online R300 data airtime for my internet. I bought R300 a few days ago, but had to download lots to try to get my project up and running.
My new project is to make some parts of my house to be voice controlled. Like turning on lights and fans with voice only. I am using an Arduino. I can program the Arduino using my Linux computer, but the voice programming library is a windows only trick. Nothing in my house runs windows.
So I am having to visualize Windows XP in my Linux desktop. I really battled because there is not a lot of support for XP anymore. Yesterday my computer power supply quit, and I had to buy another and replace it. But a whole day finally got XP with Service Pack 3 running in a virtual machine.
Next was to load all the Arduino libraries, example code, and IDE. (Integrated Development Environment)
All that was about 2.5 G of downloads.
There are many tutorials on the internet. But they all assume that I know what I am doing. That is not always the case.
My next task was to get the USB port working on the Virtual machine. That was a convoluted process.
The Arduino is programmed via the USB port.
My next mission will be to make the Arduino listen to me talk. It knows 24 preselected words, but can also learn another 32.
My good leg is swollen, dry, red, and itchy. I just rubbed Volaren on it.
In April I walked 24km. This week I have walked to the local shops 3 times. It is 1.8 km there and back. Not a long walk, but it does get me out of the house. Putting on the leg is a pain in the ass compared with zooming around the house in the wheelchair. I am becoming a house hermit.
--
03:30
I am not hungry, but that Robaxin will tear up my stomach if I don't take it with enough food. So I am eating a peanut butter and jelly sandwich. That will fatten me up some.
"Does anyone know, where the love of God goes,
when the pain, turns the minutes, to hours."
--
Friday, 20 November 2015
Day 105 - Busy Pain
Another bad night. I hate sleep time.
We had a busy day. We went to the Tshwane Municipality to try and sort out the big discrepancy between what they say we owe, and what we think we owe. I ended up paying them R7700. I feel sick.
We then went to drop off papers at the doctor. They are to apply for an added benefit for medical aid. It will give better prosthesis cover.
Then to the main medical aid building to get our new medical aid cards.
Then home to nap.
My friend came over, and helped move the microwave, and got the new solar inverter talking to the computer. Now we can see the solar and battery states at any time, and the graphs of the data.
My phantom pain is still bad. I hate this pain. It prevents me from sleeping. Even with a sleeping pill and a pain pill, the pain keeps me awake.
--
We had a busy day. We went to the Tshwane Municipality to try and sort out the big discrepancy between what they say we owe, and what we think we owe. I ended up paying them R7700. I feel sick.
We then went to drop off papers at the doctor. They are to apply for an added benefit for medical aid. It will give better prosthesis cover.
Then to the main medical aid building to get our new medical aid cards.
Then home to nap.
My friend came over, and helped move the microwave, and got the new solar inverter talking to the computer. Now we can see the solar and battery states at any time, and the graphs of the data.
My phantom pain is still bad. I hate this pain. It prevents me from sleeping. Even with a sleeping pill and a pain pill, the pain keeps me awake.
--
Thursday, 19 November 2015
Day 104 - Pain
08:10
I slept from about 20:30 till 08:00. I am very drowsy and need a a nap.
I am up for coffee and breakfast, then back to bed.
I just remembered, that a few evenings ago, I crutched 1.1km. That night I had bad phantom pain. Maddie thinks my activity levels coincide with my phantom pain levels. We will confirm that with the next few days of nothing but sleep.
Oh goody, a super breakfast.
--
nap
--
13:30
Up again. I wake up super refreshed and wanting to do many things. Very clear headed. But maybe I am clear headed like a drunk thinks he is clear headed.
I have slept 16 of the last 18 hours.
Maddie just collected the papers for the new car. it is 100% in her name now.
That is a big check next to our things to do list.
--
nap
--
18:00
I have slept most of the day.
Tomorrow is a busy day. I hope I don't sleep it away. We have to go to the medical aid place, and we have to go to the doctor. We have to go to the municipality because they claim I have not been paying my Rates and Taxes. They have been deducting from my account, but saying they didn't, so we will have to take in bank records and show them.
--
20:00
I am sick of being tired
I am tired of being sick.
Sometimes I feel I will die of pain, in pain.
When people say "I share your pain." They are lying.
Pain is the loneliest thing.
It can't be explained to others, and it can't be shared.
All it does is hurt people.
Pain sucks.
--
I slept from about 20:30 till 08:00. I am very drowsy and need a a nap.
I am up for coffee and breakfast, then back to bed.
I just remembered, that a few evenings ago, I crutched 1.1km. That night I had bad phantom pain. Maddie thinks my activity levels coincide with my phantom pain levels. We will confirm that with the next few days of nothing but sleep.
Oh goody, a super breakfast.
--
nap
--
13:30
Up again. I wake up super refreshed and wanting to do many things. Very clear headed. But maybe I am clear headed like a drunk thinks he is clear headed.
I have slept 16 of the last 18 hours.
Maddie just collected the papers for the new car. it is 100% in her name now.
That is a big check next to our things to do list.
--
nap
--
18:00
I have slept most of the day.
Tomorrow is a busy day. I hope I don't sleep it away. We have to go to the medical aid place, and we have to go to the doctor. We have to go to the municipality because they claim I have not been paying my Rates and Taxes. They have been deducting from my account, but saying they didn't, so we will have to take in bank records and show them.
--
20:00
I am sick of being tired
I am tired of being sick.
Sometimes I feel I will die of pain, in pain.
When people say "I share your pain." They are lying.
Pain is the loneliest thing.
It can't be explained to others, and it can't be shared.
All it does is hurt people.
Pain sucks.
--
Thursday, 5 November 2015
Day 91 - In Pain, and buying a car.
We both slept OK, and we got up early to drive the beetle to see another car for sale.
Maddie really likes this car. It is a 2005 Hyundai Atos with automatic transmission.
I drove it, and it really would suit us very well. It is easy for me to get into and out of. It is about 10 years newer than some of the Mercedes we have been looking at. It is smaller and gets better fuel consumption. I am concerned about the price. It is about R15,000 more than I want to spend on a car.
Even though it seems a fair deal, it is a lot of money. That R15,000 is money that my prosthesis will not get.
We went home to think about it.
But I find it hard to concentrate, and this is a big decision. My mind is fighting phantom pain.
My toes are in spasm. The car will need to go through a roadworthy check. My stump keeps jerking in sympathy with the phantom pain. If we pay the dealer to do the roadworthy, then they must fix any discrepancies. My toes feel they were run over by a steam roller. That much money will leave me with R2000 total in the bank. This pain is real pain. R2000 won't be enough to feed me for the rest of the month. This phantom jerking takes my full attention. I'll be so short of money if I buy this car. Rubbing the stump seems to help. I found this exact car for sale on the internet for R5000 cheaper. But it is now at another dealer. Maybe I need a pain pill. We call the salesman to talk about why the price has gone up. Rubbing does help the stump to not have pain. The salesman says that the lower price does not include roadworthy checks, license fees and the registration. The pain comes in waves. I need a car, and this is a good car at a fair price. Common sense says to buy the car, and worry about other costs later. I wonder if a constant massage would help with the pain.
I think we will buy the car. I need to maybe again try to meditate the pain away.
--
Maddie, the bookkeeper, has attacked my finances. So far she has found about 4000R discrepancies in my favor.
We dumped out seat cushions and gathered up all the money in the house. She drove the beetle to the car dealer while I laid home in pain and tried to equanimitize the phantom pain.
She got the ball rolling, and paid over half to the dealer, and he started the paperwork, and the inspections. We will pay the remaining amount, and collect the car on maybe next Tuesday.
Maddie really likes this car. It is a 2005 Hyundai Atos with automatic transmission.
I drove it, and it really would suit us very well. It is easy for me to get into and out of. It is about 10 years newer than some of the Mercedes we have been looking at. It is smaller and gets better fuel consumption. I am concerned about the price. It is about R15,000 more than I want to spend on a car.
Even though it seems a fair deal, it is a lot of money. That R15,000 is money that my prosthesis will not get.
We went home to think about it.
But I find it hard to concentrate, and this is a big decision. My mind is fighting phantom pain.
My toes are in spasm. The car will need to go through a roadworthy check. My stump keeps jerking in sympathy with the phantom pain. If we pay the dealer to do the roadworthy, then they must fix any discrepancies. My toes feel they were run over by a steam roller. That much money will leave me with R2000 total in the bank. This pain is real pain. R2000 won't be enough to feed me for the rest of the month. This phantom jerking takes my full attention. I'll be so short of money if I buy this car. Rubbing the stump seems to help. I found this exact car for sale on the internet for R5000 cheaper. But it is now at another dealer. Maybe I need a pain pill. We call the salesman to talk about why the price has gone up. Rubbing does help the stump to not have pain. The salesman says that the lower price does not include roadworthy checks, license fees and the registration. The pain comes in waves. I need a car, and this is a good car at a fair price. Common sense says to buy the car, and worry about other costs later. I wonder if a constant massage would help with the pain.
I think we will buy the car. I need to maybe again try to meditate the pain away.
--
Maddie, the bookkeeper, has attacked my finances. So far she has found about 4000R discrepancies in my favor.
We dumped out seat cushions and gathered up all the money in the house. She drove the beetle to the car dealer while I laid home in pain and tried to equanimitize the phantom pain.
She got the ball rolling, and paid over half to the dealer, and he started the paperwork, and the inspections. We will pay the remaining amount, and collect the car on maybe next Tuesday.
I feel useless. Maddie is so busy, and I lay around in pain.
I did 2 meditations today. One was a good one, and I spent about 30 minutes trying to equanimitize the phantom pain. Sweeping the stump only shows very minor sensations, and I get no feedback from the missing foot. The only sensations the missing foot has, are one that it sends out as pain signals. I can detect nothing except the false pain signal. It is like the pain signals have no source. There is nothing to equanimitize.
--
People that know me personally, know I am a very frugal person, and that I get physically ill when I spend money.
For those that don't know me, just ignore all my rants about money. I have enough money, but I will always complain loud and strong if I have to spend any.
--
--
People that know me personally, know I am a very frugal person, and that I get physically ill when I spend money.
For those that don't know me, just ignore all my rants about money. I have enough money, but I will always complain loud and strong if I have to spend any.
--
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