09:30
I am battling with my current socket.
When I put it on first thing in the morning, it is great. But soon the stump goes farther and farther into the socket, and puts more force on the stump end. Inflating the bladders helps, but I feel I need many more bladders. Especially up high in the back of the stump. This is where I need to add stump socks a few times a day. Yesterday I had on 4 socks by the end of the day. That means 4 times during the day I have to take off pants, take off leg, add sock, then put leg back on and then get dressed again.
Around the house I only wear my underwear. It makes life a lot easier.
I wanted to find a more permanent solution to the problem of the silicone liner pulling my pubic hairs as I walk. I tried shaving, and that sort of works, but stubble is worse than hair, so I have to shave every day.
Yesterday I went shopping at the Pharmacy.
I went straight to the "wrist brace" department, and tried on different braces to make my cane walking easier. I wore it from then on, and bought the empty box.
I stopped a white lady in her 50s and asked her about removing pubic hairs. She advised hair removal creams, because the new hair that grows, is not a stubble, but new hairs. I bought some.
Then I got my prescription drugs from my one legged buddy pharmacist. We chatted a bit.
When I got home I wanted to test the hair removal cream.
The box says to first test the cream on the inside of my elbow to see if there is any allergic reaction. The box also says to...
"Leave the cream on from between 3, and 10 minutes. Don't guess at the time, use a watch to make the time accurate."
So, I used a watch to make sure I was precisely accurate between 3 and 10 minutes. :-)
There was no rash or pain, so I smeared some on my crotch hairs, and 5 minutes later wiped the brown, sticky, goo off. It seemed to work, and this morning I did not put on a pair of cut up pantyhose before the liner. I'll have to wait and see if it is a good thing or not.
--
Oct 26 - 03:40
I went to bed at 23:00, and woke up at 03:00. My stump itches, and I have a burning pain below where my left knee should be.
I don't know where this PLP came from, and the itching isn't from where I did the hair removal.
Yesterday was an easy day. I drove to the mall where I had lunch with a friend. We then did a short walk to a knife store and a book store. Then back home.
Sometimes if there is a bit of glycerin or cream inside the silicone liner, there will form blisters. Where the skin and the silicone are stuck to each other, and where the skin slides next to the silicone will form blisters from the stretching of the skin between the two areas. I think that is what happened. There was no sign of discomfort as I walked today, but now there are blisters about half way up my stump on the outside of the stump. Why is nothing ever easy?
My buddy has high speed internet, and downloads financial news videos for me. I have a few Kaiser reports I can watch till I feel sleepy, or the pain quits. I did some drugs again. I thought the drug use was over. Not so.
--
Showing posts with label phantom_pain. Show all posts
Showing posts with label phantom_pain. Show all posts
Wednesday, 26 October 2016
Monday, 24 October 2016
Oct 24 2016 - PLP and can't sleep.
01:15
There are many reasons why I can't sleep.
I have been trying to increase my daily walking to get ready for another park run before I go to the states. This socket really hurts on my ischail bone, and I have blisters and a rubbed raw spot. The prosthesis place is making a new socket with air bladders inside it. I so hope it works well. The new socket should be ready by Thursday.
This next socket will probably be the one I go to the states with, so it better be good enough for 6 months. I seem to average about 3 weeks per socket. Needless to say I am concerned about that.
I walked about 1.5 km every day last week. Any farther is very painful. The whole air bladder thing is good because it allows me to change the fit of the socket. But with the increase flexibility come increase complexity. The best way for me to inflate the bladders is through the zipper in front of my shorts. It is a little shocking to other people. They see me unzip, play around inside there, then starts pumping a rubber pump. They all have dirty minds. :-)
On Friday, I was walking back from the shops, and my Achilles tendon started hurting. I had that a few years ago, and had to wear a moon boot for a month to fix it. I don't think I could use a prosthetic leg AND a moon boot at the same time.
I walked slow and gentle the rest of the way to the house. I was almost to the front door, when I fell in the driveway. As usual, I don't know why. I was walking, then I was face down. I hurt my right wrist. I'm sure it is just sprained. It is swollen a bit and tender, but everything seems to work OK.
Now I can't use the cane or the crutches. Even the wheel chair is difficult. I have to use the wrist bone to push on the tire.
With blisters on my ischail, sitting in the wheel chair sucks a bit, add to that a sore wrist, and I decided to play computer games all day Sunday.
I had planned on buying food this Sunday, because I am so close to being on a forced diet. For real food, I only have eggs and Muesli. But getting around with this wrist means I couldn't shop.
I did find some old, unopened bran self raising flour, so I made some flat pan bread. Not healthy, but tastes good with enough peanut butter and jelly on it. Actually anything tastes good with enough peanut butter and jelly on it. :-) If my wrist doesn't get better soon, I may find out how eggs and peanut butter taste.
(and Muesli?)
I went to bed at about 22:30 and couldn't sleep. When I turn out the light, I start a one hour white noise generator. I have not heard it quit in a month. I am sound asleep by then. But tonight I was still awake when it quit. I started it again.
For some reason I was having PLP. First time in a long time. My wrist also hurt when I moved in bed.
Having only one leg means it is harder to sit up in bed. I used to just hold both feet in the air, with my legs straight, and I could sit up. Now nothing happens when I do that. I now have to roll onto my side, then push up sideways with my arms, until I sit. I didn't think about my wrist, and I hurt it.
When the noise generator quit the second time, I just got up. I took some pain drugs for the first time in many weeks, and I am now waiting for them to kick in. I don't know if I took the drug for the wrist pain, or the PLP, or the ischail blisters. I guess it doesn't really matter.
---
There are many reasons why I can't sleep.
I have been trying to increase my daily walking to get ready for another park run before I go to the states. This socket really hurts on my ischail bone, and I have blisters and a rubbed raw spot. The prosthesis place is making a new socket with air bladders inside it. I so hope it works well. The new socket should be ready by Thursday.
This next socket will probably be the one I go to the states with, so it better be good enough for 6 months. I seem to average about 3 weeks per socket. Needless to say I am concerned about that.
I walked about 1.5 km every day last week. Any farther is very painful. The whole air bladder thing is good because it allows me to change the fit of the socket. But with the increase flexibility come increase complexity. The best way for me to inflate the bladders is through the zipper in front of my shorts. It is a little shocking to other people. They see me unzip, play around inside there, then starts pumping a rubber pump. They all have dirty minds. :-)
On Friday, I was walking back from the shops, and my Achilles tendon started hurting. I had that a few years ago, and had to wear a moon boot for a month to fix it. I don't think I could use a prosthetic leg AND a moon boot at the same time.
I walked slow and gentle the rest of the way to the house. I was almost to the front door, when I fell in the driveway. As usual, I don't know why. I was walking, then I was face down. I hurt my right wrist. I'm sure it is just sprained. It is swollen a bit and tender, but everything seems to work OK.
Now I can't use the cane or the crutches. Even the wheel chair is difficult. I have to use the wrist bone to push on the tire.
With blisters on my ischail, sitting in the wheel chair sucks a bit, add to that a sore wrist, and I decided to play computer games all day Sunday.
I had planned on buying food this Sunday, because I am so close to being on a forced diet. For real food, I only have eggs and Muesli. But getting around with this wrist means I couldn't shop.
I did find some old, unopened bran self raising flour, so I made some flat pan bread. Not healthy, but tastes good with enough peanut butter and jelly on it. Actually anything tastes good with enough peanut butter and jelly on it. :-) If my wrist doesn't get better soon, I may find out how eggs and peanut butter taste.
(and Muesli?)
I went to bed at about 22:30 and couldn't sleep. When I turn out the light, I start a one hour white noise generator. I have not heard it quit in a month. I am sound asleep by then. But tonight I was still awake when it quit. I started it again.
For some reason I was having PLP. First time in a long time. My wrist also hurt when I moved in bed.
Having only one leg means it is harder to sit up in bed. I used to just hold both feet in the air, with my legs straight, and I could sit up. Now nothing happens when I do that. I now have to roll onto my side, then push up sideways with my arms, until I sit. I didn't think about my wrist, and I hurt it.
When the noise generator quit the second time, I just got up. I took some pain drugs for the first time in many weeks, and I am now waiting for them to kick in. I don't know if I took the drug for the wrist pain, or the PLP, or the ischail blisters. I guess it doesn't really matter.
---
Saturday, 2 July 2016
2 July 2016 - Cold on a Saturday morning
01:30
A blog at this time of the night is never a good thing. I can not believe I am having such bad PLP. I thought that was a thing of the past. Not so.
I wore the silicone liner for a few hours yesterday evening. That extra compression on the stump may be the cause.
I have not been able to get the silicone liner on for weeks now. Today I found that if I press the stump down hard onto the wheel chair cushion, I can get the liner on with only a little pain. Too bad I can't do the same with the socket.
Plan "A", had me being in George with Maddie by early next week. Now I have blood tests on Tuesday, and Oncologist on Wednesday.
My prosthesis guy called, and wants to try to design a different socket on Wednesday also. He will probably make another mold then, and I'll get the new socket on Thursday. I think there is still to much pain for me to be able to judge the value of another socket. I still have 2 sockets, and both cause lots of pain. Both were good sockets in their time. The stump shrunk to much for the one, and the second one was much better, and I was able to walk, and even do the park runs.
I removed the latest socket with the Texas flag and the holes, and installed the old, big one onto the knee. I did this myself at home. This socket was too big 3 weeks ago, and now my stump has swollen up so much over the last few weeks, that socket is now to small. I would have to push lots to get the stump in it now, and any pushing is painful. I am such a wimp!
As I am feeling sorry for myself right now, I have decided to make and consume a hot dog, jalapeno omelet.
I don't know why, but jalapenos always cheer me up.
Feeling sorry for myself, makes me feel sorry for myself.
Feeling sorry for myself is recursive.
Have you ever seen a sad three legged dog? Not me. They still just want love and someone to play with. I could learn lots from dogs.
A baby bird that falls out of the nest doesn't feel sorry for itself. Even as it gets eaten by a cat. I could learn lots from baby birds.
--
02:20
Great omelet.
Lots of jalapenos. Now I have hiccups.
It has been cold the last few days. There is a cold front coming through, and tonight will be just above freezing. Most South African houses don't have any form of insulation. At least I have solar panels, so once the sun is up I can cheaply run a small heater.
Day before yesterday I drug a ladder from the shed, and got up to the attic. I put a desktop fan up there blowing down through a hole on a board that fits in the trap door. This blows hot attic air down into the bedroom. It also blows dust and small attic trivia. The attic got up to 28C yesterday while the outside temperature never got above 18C. I also built it a trap door held up with magnets to try and keep the night time heat in.
Climbing the ladder with only one leg is not for the faint hearted. Falling could be the start of some real problems. But then again it could also be the end of most of my problems. So I figured 50/50, and up I went.
The biggest difficulty was my good leg getting tired. There is no place to sit and rest on a ladder. So I would climb up, work for a bit, then down to the wheel chair for a rest, then back up again. 5 times to get everything done.
Yesterday was a laundry day. I managed to get all the clean, wet clothes out of the washing machine, and into the laundry basket. While I was in the wheel chair, with the basket on my lap, navigating around the house toward the back yard, the basket mysteriously fell off my lap. Clothes stops/pegs/pins and laundry all over the ground. So I started picking things up and fell forward out of the wheel chair. It takes some doing to fall out of a wheel chair. I can add that to my "Been there, Done that." list.
As I was laying on my "clean" clothes on the ground, I figured this was a good time to pick stuff up and refill the laundry basket, then clumsily got back into the wheel chair.
Back inside to rinse the laundry in the machine again. I figured the dirt wasn't really "dirty" like the stink from my armpits is, so I didn't bother with soap this time.
I found a bungee cord that I used to use for holding stuff on the back of a motorcycle, and once the laundry basket was again on my lap, I secured it there with the bungee cord. A few hours later I brought in all the still damp laundry.
I'm sure my many friends had a busy productive day doing many things. I just did laundry.
This PLP is not getting less. It used to go away whenever I was busy. Not this time. I think I am going to drug up with pain killers, read a bit, and then probably sleep till past noon.
I had a friend once that always slept late. He used to say that if you get out of bed before noon, then you just wasted half the day. :-)
03:17
---
A blog at this time of the night is never a good thing. I can not believe I am having such bad PLP. I thought that was a thing of the past. Not so.
I wore the silicone liner for a few hours yesterday evening. That extra compression on the stump may be the cause.
I have not been able to get the silicone liner on for weeks now. Today I found that if I press the stump down hard onto the wheel chair cushion, I can get the liner on with only a little pain. Too bad I can't do the same with the socket.
Plan "A", had me being in George with Maddie by early next week. Now I have blood tests on Tuesday, and Oncologist on Wednesday.
My prosthesis guy called, and wants to try to design a different socket on Wednesday also. He will probably make another mold then, and I'll get the new socket on Thursday. I think there is still to much pain for me to be able to judge the value of another socket. I still have 2 sockets, and both cause lots of pain. Both were good sockets in their time. The stump shrunk to much for the one, and the second one was much better, and I was able to walk, and even do the park runs.
I removed the latest socket with the Texas flag and the holes, and installed the old, big one onto the knee. I did this myself at home. This socket was too big 3 weeks ago, and now my stump has swollen up so much over the last few weeks, that socket is now to small. I would have to push lots to get the stump in it now, and any pushing is painful. I am such a wimp!
As I am feeling sorry for myself right now, I have decided to make and consume a hot dog, jalapeno omelet.
I don't know why, but jalapenos always cheer me up.
Feeling sorry for myself, makes me feel sorry for myself.
Feeling sorry for myself is recursive.
Have you ever seen a sad three legged dog? Not me. They still just want love and someone to play with. I could learn lots from dogs.
A baby bird that falls out of the nest doesn't feel sorry for itself. Even as it gets eaten by a cat. I could learn lots from baby birds.
--
02:20
Great omelet.
It has been cold the last few days. There is a cold front coming through, and tonight will be just above freezing. Most South African houses don't have any form of insulation. At least I have solar panels, so once the sun is up I can cheaply run a small heater.
Day before yesterday I drug a ladder from the shed, and got up to the attic. I put a desktop fan up there blowing down through a hole on a board that fits in the trap door. This blows hot attic air down into the bedroom. It also blows dust and small attic trivia. The attic got up to 28C yesterday while the outside temperature never got above 18C. I also built it a trap door held up with magnets to try and keep the night time heat in.
The biggest difficulty was my good leg getting tired. There is no place to sit and rest on a ladder. So I would climb up, work for a bit, then down to the wheel chair for a rest, then back up again. 5 times to get everything done.
Yesterday was a laundry day. I managed to get all the clean, wet clothes out of the washing machine, and into the laundry basket. While I was in the wheel chair, with the basket on my lap, navigating around the house toward the back yard, the basket mysteriously fell off my lap. Clothes stops/pegs/pins and laundry all over the ground. So I started picking things up and fell forward out of the wheel chair. It takes some doing to fall out of a wheel chair. I can add that to my "Been there, Done that." list.
As I was laying on my "clean" clothes on the ground, I figured this was a good time to pick stuff up and refill the laundry basket, then clumsily got back into the wheel chair.
Back inside to rinse the laundry in the machine again. I figured the dirt wasn't really "dirty" like the stink from my armpits is, so I didn't bother with soap this time.
I found a bungee cord that I used to use for holding stuff on the back of a motorcycle, and once the laundry basket was again on my lap, I secured it there with the bungee cord. A few hours later I brought in all the still damp laundry.
I'm sure my many friends had a busy productive day doing many things. I just did laundry.
This PLP is not getting less. It used to go away whenever I was busy. Not this time. I think I am going to drug up with pain killers, read a bit, and then probably sleep till past noon.
I had a friend once that always slept late. He used to say that if you get out of bed before noon, then you just wasted half the day. :-)
03:17
---
Saturday, 28 May 2016
May 28 2016 - My first Park Run on Prosthesis
This morning I awoke to the desire for a long walk.
Then I remembered it was Saturday, and every Saturday there are Park Runs through out Pretoria. (and throughout the world)
I chose the Voortrekker Monument Park Run, as I have done this run a few times (when I had two legs). My best time (when I had two legs) was 35 minutes for the 5 km (3.1 miles) run.
This Park Run is around the Voortrekker Monument. It is also in a game reserve, so I should see different types of antelopes.
The Voortrekker Monument is an Afrikaans monument to the early Dutch settlers. It is sometimes controversial because it is a monument to the same people that gave us Apartheid.
I see many similarities, between the people that this monument is in honor of, and the people the Alamo is in honor of.
http://www.vtm.org.za/
I arrived at the Voortrekker Monument early, and talked with the officials. I explained that I know they only keep times up to one hour, but I would probably take 2 hours. Is there any plan we could make so I could get credit for doing the run.
Everyone was so nice. They scanned my bar-code which is normally done at the finish line, and said that I could call the head lady with my time when I finished. So refreshing to find people that just solve a problem. No Paperwork, No Committees, and No Bureaucracies.
The start was about 300 yards/meters from the finish line where I had talked with the officials. I had to rush to get all my body armor on, and get up the steep hill to the start.
I got to the start line and sat gasping. I was dripping with sweat. A lady came by and said "You do know that this is only the start, NOT the finish?" I assured her that I was aware of that.
There were about 800 runners at the start line. The full spectrum of people was there. Some were hard core athletes, some were trying to get fit, some were trying to loose weight, and some were just on an outing with their children. There were maybe 20 people pushing prams.
Usually there are many dogs on a Park Run, but since this one was in a game reserve, no dogs were allowed.
As everyone got ready, the group of runners sorts itself out. The fastest to the front, and the children and baby strollers more toward the rear, and cripples at the far back.
I positioned myself way at the back, behind some parents with a 1 year old toddler in diapers. I asked if the child would be carried later. The man said probably, but this was the kids 3rd Park run.
I would initially just walk behind the toddler, and not try to pass him to early in the race.
The organizers gave the word, and off the herd went.
And the toddler took off like a rocket. I felt like I was in "Park". Maybe because of me, is why they call it the "Park" Run?
By the time I got to the "start" line the nearest person was about 20 meters ahead of me, and I couldn't even see the toddler. Fortunately the route is well marked because a few minutes later, I was all alone.
At about the halfway mark, I passed the finish line. (going in the opposite direction to everyone else). There was already a huge automobile traffic jam of the runners going home after finishing, cooling off, and chatting to all their buddies. Most of the people had finished. I was only about half way.
The first half was on fairly level ground, but the second half was up a 100 meter hill and back down from it.
I found the walking uphill to be much easier than I had expected. That meant to angle of my prosthetic foot was a bit off, and the downhill part would be much harder.
At the top of the hill, waiting, was one of the officials. He said he just wanted to make sure I was OK. I checked my GPS and saw that my time was 1:17, and my average speed so far was a blistering 3.2 km/hr.
What a unique view of Pretoria.
At the top of the hill is Fort Schanskop.
There is a very steep ramp around it that spirals down. This ramp was long and very difficult for me. For that 100 meters, my leg never unlocked. Very slow and awkward. This was followed by 200 meters of steep downhill of cobble stones. Again the leg would not unlock, and my biggest steps were the width of a cobblestone. During this section I felt blisters coming at the top of the socket. I stopped and lubed everything with some glycerin I had thankfully brought with me. Before the bottom of the cobblestone I stopped again to lube the stump. I could now feel definite blisters forming at the top of the socket.
The last 400 meters was moderate downhill. Not a problem, except the blisters were now getting worse.
At the finish line were 4 of the officials. They read out my time... 1 hr, 47 min, 30 sec.
I told them they should all be at home now, not waiting for me. They said that they normally stop the race and all timing at 1 hour. But because they waited for me, they also recorded an extra 20 people that normally would not have gotten timed. The one lady said they have to rethink the 1 hour limit. She said maybe at 1 hour they could start packing up, but leave one person at the finish line for slow people.
This would be a good thing, as anyone that finishes after an hour must really be the sort of person whom the whole Park Run philosophy is aimed at.
My average speed was 2.7 km/hr. That steep downhill really slowed me down.
The slowest part was at the top of Fort Schanskop. But I did notice that there were stairs also in addition to the ramp. I asked if I could have used the stairs instead of the ramp. The officials said yes, as it would actually have been farther, not shorter. For me the stairs with banisters followed by a flat grassy area would definitely be faster.
I finished 806th.
http://www.parkrun.co.za/voortrekkermonument/results/athletehistory/?athleteNumber=836071
I can only get better.
But for now I am experiencing PLP and twitching. There is a burning spot above my left outside ankle. (That is the leg that is not there.)
--
Then I remembered it was Saturday, and every Saturday there are Park Runs through out Pretoria. (and throughout the world)
I chose the Voortrekker Monument Park Run, as I have done this run a few times (when I had two legs). My best time (when I had two legs) was 35 minutes for the 5 km (3.1 miles) run.
This Park Run is around the Voortrekker Monument. It is also in a game reserve, so I should see different types of antelopes.
The Voortrekker Monument is an Afrikaans monument to the early Dutch settlers. It is sometimes controversial because it is a monument to the same people that gave us Apartheid.
I see many similarities, between the people that this monument is in honor of, and the people the Alamo is in honor of.
 |
| The Monument from the start line. |
I arrived at the Voortrekker Monument early, and talked with the officials. I explained that I know they only keep times up to one hour, but I would probably take 2 hours. Is there any plan we could make so I could get credit for doing the run.
Everyone was so nice. They scanned my bar-code which is normally done at the finish line, and said that I could call the head lady with my time when I finished. So refreshing to find people that just solve a problem. No Paperwork, No Committees, and No Bureaucracies.
The start was about 300 yards/meters from the finish line where I had talked with the officials. I had to rush to get all my body armor on, and get up the steep hill to the start.
I got to the start line and sat gasping. I was dripping with sweat. A lady came by and said "You do know that this is only the start, NOT the finish?" I assured her that I was aware of that.
There were about 800 runners at the start line. The full spectrum of people was there. Some were hard core athletes, some were trying to get fit, some were trying to loose weight, and some were just on an outing with their children. There were maybe 20 people pushing prams.
Usually there are many dogs on a Park Run, but since this one was in a game reserve, no dogs were allowed.
As everyone got ready, the group of runners sorts itself out. The fastest to the front, and the children and baby strollers more toward the rear, and cripples at the far back.
I positioned myself way at the back, behind some parents with a 1 year old toddler in diapers. I asked if the child would be carried later. The man said probably, but this was the kids 3rd Park run.
I would initially just walk behind the toddler, and not try to pass him to early in the race.
The organizers gave the word, and off the herd went.
And the toddler took off like a rocket. I felt like I was in "Park". Maybe because of me, is why they call it the "Park" Run?
By the time I got to the "start" line the nearest person was about 20 meters ahead of me, and I couldn't even see the toddler. Fortunately the route is well marked because a few minutes later, I was all alone.
At about the halfway mark, I passed the finish line. (going in the opposite direction to everyone else). There was already a huge automobile traffic jam of the runners going home after finishing, cooling off, and chatting to all their buddies. Most of the people had finished. I was only about half way.
 |
| Green teardrop is the start, and Red teardrop is finish. |
The first half was on fairly level ground, but the second half was up a 100 meter hill and back down from it.
I found the walking uphill to be much easier than I had expected. That meant to angle of my prosthetic foot was a bit off, and the downhill part would be much harder.
At the top of the hill, waiting, was one of the officials. He said he just wanted to make sure I was OK. I checked my GPS and saw that my time was 1:17, and my average speed so far was a blistering 3.2 km/hr.
What a unique view of Pretoria.
At the top of the hill is Fort Schanskop.
There is a very steep ramp around it that spirals down. This ramp was long and very difficult for me. For that 100 meters, my leg never unlocked. Very slow and awkward. This was followed by 200 meters of steep downhill of cobble stones. Again the leg would not unlock, and my biggest steps were the width of a cobblestone. During this section I felt blisters coming at the top of the socket. I stopped and lubed everything with some glycerin I had thankfully brought with me. Before the bottom of the cobblestone I stopped again to lube the stump. I could now feel definite blisters forming at the top of the socket.
The last 400 meters was moderate downhill. Not a problem, except the blisters were now getting worse.
At the finish line were 4 of the officials. They read out my time... 1 hr, 47 min, 30 sec.
I told them they should all be at home now, not waiting for me. They said that they normally stop the race and all timing at 1 hour. But because they waited for me, they also recorded an extra 20 people that normally would not have gotten timed. The one lady said they have to rethink the 1 hour limit. She said maybe at 1 hour they could start packing up, but leave one person at the finish line for slow people.
This would be a good thing, as anyone that finishes after an hour must really be the sort of person whom the whole Park Run philosophy is aimed at.
My average speed was 2.7 km/hr. That steep downhill really slowed me down.
The slowest part was at the top of Fort Schanskop. But I did notice that there were stairs also in addition to the ramp. I asked if I could have used the stairs instead of the ramp. The officials said yes, as it would actually have been farther, not shorter. For me the stairs with banisters followed by a flat grassy area would definitely be faster.
I finished 806th.
http://www.parkrun.co.za/voortrekkermonument/results/athletehistory/?athleteNumber=836071
I can only get better.
But for now I am experiencing PLP and twitching. There is a burning spot above my left outside ankle. (That is the leg that is not there.)
--
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, 29 April 2016
April 29 2016 - Ground hog days
09:00
How did I sleep last night?
See previous blog.
What did I do yesterday?
See previous blog.
It is like I am living the same day over and over.
Go to bed at 22:00 and fight PLP until about 02:00 then sleep till 10:00 the next day. Wake up have an egg and coffee. Take a nap. Wash dishes. Eat. Take drugs. Play train game. Watch TV. Go to bed at 22:00 and fight PLP until about 02:00 then sleep till 10:00 the next day. Wake up have an egg and coffee. Take a nap. Do laundry. Eat. Take drugs. Play train game. Watch TV. Go to bed at 22:00 and fight PLP until about 02:00 then sleep till 10:00 the next day. Wake up have an egg and coffee. Take a nap. Wash dishes. Eat. Take drugs. Play train game. Watch TV.
Today I am setting a goal of getting all my Arduino stuff out, and getting it hooked up to my Linux desktop so I can start programming the Arduino. I want to make the Arduino be voice activated to control my house.
The prosthesis seems to be relegated to doing walk duty only. In the house, it is so much easier to use the wheelchair.
It really is a pain to put the leg on and take it off. But today I need to go out to the shed to get some cables for the Arduino. If I am going to do that, then I might as well do laundry. I need the leg on for both.
Also today my TENS (Transcutaneous Electrical Nerve Stimulation) unit should be delivered. I need to go to school on using it.
My friend (Google) tells me that Doctors and Physiotherapists say to not use a TENS unit for more than 20 minutes. One hour is Maximum. But many people on the internet use it constantly. It seems to me to be whether the pain is muscular, or nerve only.
Sciatica is 100% nerve pain, but most back pain is muscle cramping. 20 minute should be enough to stop a cramping muscle. Stopping nerve pain is different. TENS only works on nerves while it is actually on.
--
Here is my Arduino project so far...
Notice the empty TV tray. That is as far as I have gotten. An empty tray.
--
How did I sleep last night?
See previous blog.
What did I do yesterday?
See previous blog.
It is like I am living the same day over and over.
Go to bed at 22:00 and fight PLP until about 02:00 then sleep till 10:00 the next day. Wake up have an egg and coffee. Take a nap. Wash dishes. Eat. Take drugs. Play train game. Watch TV. Go to bed at 22:00 and fight PLP until about 02:00 then sleep till 10:00 the next day. Wake up have an egg and coffee. Take a nap. Do laundry. Eat. Take drugs. Play train game. Watch TV. Go to bed at 22:00 and fight PLP until about 02:00 then sleep till 10:00 the next day. Wake up have an egg and coffee. Take a nap. Wash dishes. Eat. Take drugs. Play train game. Watch TV.
Today I am setting a goal of getting all my Arduino stuff out, and getting it hooked up to my Linux desktop so I can start programming the Arduino. I want to make the Arduino be voice activated to control my house.
The prosthesis seems to be relegated to doing walk duty only. In the house, it is so much easier to use the wheelchair.
It really is a pain to put the leg on and take it off. But today I need to go out to the shed to get some cables for the Arduino. If I am going to do that, then I might as well do laundry. I need the leg on for both.
Also today my TENS (Transcutaneous Electrical Nerve Stimulation) unit should be delivered. I need to go to school on using it.
My friend (Google) tells me that Doctors and Physiotherapists say to not use a TENS unit for more than 20 minutes. One hour is Maximum. But many people on the internet use it constantly. It seems to me to be whether the pain is muscular, or nerve only.
Sciatica is 100% nerve pain, but most back pain is muscle cramping. 20 minute should be enough to stop a cramping muscle. Stopping nerve pain is different. TENS only works on nerves while it is actually on.
--
Here is my Arduino project so far...
--
Saturday, 23 April 2016
April 23 2016 - Breaking the blog fast.
03:02
I am sure you are aware of what a three in the morning blog means...PLP.
I was in bed and sleepy by 22:00 and I slept very well till about 02:30. I don't expect to get any more sleep tonight.
I am also sure that the PLP is getting less. It still rears it's head up from time to time, but the 24 hour average is definitely less. This bout seems to be the result of a long walk I did yesterday.
I have been convinced to try TENS ( Transcutaneous electrical nerve stimulation ). Maybe it can help with PLP. It is a small machine that supplies a small shock to the nerves to try to deaden them. Maybe if the stump nerves can be deadened, then the PLP will have no reason to be there. I will order a TENS unit tomorrow. It should be here by next week.
My Mauch knee started having some slop in the hydraulic piston. It was only there in one mode, but that mode made the risk of a fall much more likely. That knee has been sent to Iceland for repair, so I have a loaner knee. I was hoping the loaner knee would be a different type of knee, so I could try something new, but my loaner is another Mauch knee.
Yesterday I decided to do a long walk. I want to be able to walk to the closest mall and back, which is just over 5 km. I am not ready for that yet, but I did manage to walk 4.26 km around my neighborhood. My average walking speed is also getting faster. My average speed yesterday was 3.4 km/hr.
Maddie was visiting me for 2 weeks. She has now returned to her house down in George. Now I have to make my own meals, and do my own laundry. I don't know if it is fair to make me have to be responsible for folding my own socks.
We need to come up with a way to see more of each other. I very much like being with her.
Maddie is in car buying mode. She needs something like a small city car that can also do the occasional freeway trip. She is favoring a Toyota Yaris.
I am making my Lyrica and Cymgen (Cimbalta) doses gradually less. I am trying to kick both drugs over a 6 week period. Of course that is assuming the PLP reduction is not from those drugs. If the reduction of PLP is from the Lyrica or Cymgen, then I will have a life changing decision to make.
I will have to choose between a blurry, lackadaisical, sheep like life, or a pain filled life with a clear head.
Unfortunately, there is no option for short term PLP relief except by reducing consciousness.
My next house hold mission is to get an Arduino computer to listen to me talk, and to do what I tell it to do. I have always been interested in voice controlled smart homes.
I started a new Science fiction book. It is about a world where Math doesn't work exactly the same as in our world. This means that physics also works different. So I will live in a strange world till the book is done.
I am sure you are aware of what a three in the morning blog means...PLP.
I was in bed and sleepy by 22:00 and I slept very well till about 02:30. I don't expect to get any more sleep tonight.
I am also sure that the PLP is getting less. It still rears it's head up from time to time, but the 24 hour average is definitely less. This bout seems to be the result of a long walk I did yesterday.
I have been convinced to try TENS ( Transcutaneous electrical nerve stimulation ). Maybe it can help with PLP. It is a small machine that supplies a small shock to the nerves to try to deaden them. Maybe if the stump nerves can be deadened, then the PLP will have no reason to be there. I will order a TENS unit tomorrow. It should be here by next week.
My Mauch knee started having some slop in the hydraulic piston. It was only there in one mode, but that mode made the risk of a fall much more likely. That knee has been sent to Iceland for repair, so I have a loaner knee. I was hoping the loaner knee would be a different type of knee, so I could try something new, but my loaner is another Mauch knee.
Yesterday I decided to do a long walk. I want to be able to walk to the closest mall and back, which is just over 5 km. I am not ready for that yet, but I did manage to walk 4.26 km around my neighborhood. My average walking speed is also getting faster. My average speed yesterday was 3.4 km/hr.
Maddie was visiting me for 2 weeks. She has now returned to her house down in George. Now I have to make my own meals, and do my own laundry. I don't know if it is fair to make me have to be responsible for folding my own socks.
We need to come up with a way to see more of each other. I very much like being with her.
Maddie is in car buying mode. She needs something like a small city car that can also do the occasional freeway trip. She is favoring a Toyota Yaris.
I am making my Lyrica and Cymgen (Cimbalta) doses gradually less. I am trying to kick both drugs over a 6 week period. Of course that is assuming the PLP reduction is not from those drugs. If the reduction of PLP is from the Lyrica or Cymgen, then I will have a life changing decision to make.
I will have to choose between a blurry, lackadaisical, sheep like life, or a pain filled life with a clear head.
Unfortunately, there is no option for short term PLP relief except by reducing consciousness.
My next house hold mission is to get an Arduino computer to listen to me talk, and to do what I tell it to do. I have always been interested in voice controlled smart homes.
I started a new Science fiction book. It is about a world where Math doesn't work exactly the same as in our world. This means that physics also works different. So I will live in a strange world till the book is done.
Monday, 11 April 2016
April 11 2016 - Lyrica and NFC
19:00
Last night I couldn't sleep from about 1:30 till 08:30. Very bad Phantom pain (PLP). The pain got bad so I took 2 Tramacet at 05:00. Tramacet doesn't stop PLP, but it does knock me out. They take a few hours to start working. I slept from 08:30 till after 13:00.
If I google "Lyrica withdrawal side effects" I get about 500,000 hits. Trust me people, Lyrica and Cymgyn (Cybalta) are bad things. They are prescribed so often because Doctors are told they are less risky from a legal perspective than opiates.
There are SOOO many people trying to get off Lyrica and Cybalta. The withdrawal symptoms are terrible, and usually the normal side effects are often worse than the original disease.
If I miss a Lyrica or Cybbalta dose I get the jerks, tingling in my phantom leg, and can't sleep, OR can't stay awake. When things get bad, is when I sleep through the time to take a Lyrica, and the effects start to snowball. Lyrica is very sensitive to under, or over dosing. So taking a Lyrica 3 hours late, means I both under dose, then overdose. I get insomnia mixed with narcolepsy. Duh!!
It doesn't feel quite like narcolepsy. It is more like my brain just shuts down for about 15 minutes. Like a super strong nap attack. But it never quite feels like sleep. Sort of like the brain is deprived of oxygen, and ceases to work. I believe in my case it is neurological, and caused by Lyrica and or Cymgen.
I have spent a very large amount of time to try to figure a mental way to deal with an obvious mental problem. Today I had about 5 of the "nap attacks". My brain would be functioning very well, then within a few minutes, I would get stupid, start slurring my words, and then pass out for 10 - 15 minutes.
While I was in awake mode, the PLP was between bad and very bad. Talking or doing something busy was not as much relief as it had been in the past. I noticed that as I slipped from smart, to stupid, to comatose, My PLP would decrease, and disappear right before I passed out. On awaking the opposite happened. As I gradually became more awake, the pain increased.
I think the Lyrica/Cymgen combination does reduce the PLP. But at a tremendous price.
Do I want the hell of being stupid and fading out, or do I want the hell of pain.
It seem that either way is bad news for me.
--
April 11 10:00
I slept well last night.
I called the PET scan place and asked if I can have a report of the scan. They say I have to see the doctor first, before they will give me the report. My doctor appointment is only for Wednesday afternoon.
So maybe today, I will walk to the mall. Maddie can drive there and we can have lunch. The mall is about 2.5 km away. I should be able to walk that. The road to the mall is a slight downhill. It would be easier for me to walk back home from the mall. Uphills are harder from an energy point of view, but easier from a prosthetic point of view.
The washing machine and Maddie are currently having a conversation. They are bleating at each other.
My buddy gave me some NFC tags. Some are thin like a small band aid. Some are like a key chain. One is smaller than a little finger nail.
If a tag is held very close to my phone, the information on the tag is inputted into my phone. This is the same technology that is used in a passport, and new credit cards. My phone tries to read a passport, but fails. I think the passport is encrypted, or else it is some proprietary protocol.
A friend uses them to change the settings on his phone. He puts a programmed tag in his car, so when he gets into the car, his phone knows to turn on blue tooth, and turn the GPS on. He has another tag near his bed, so when he goes to bed the phone knows to go to silent mode.
They are a wonderful solution to a problem that I have yet to find.
--
Last night I couldn't sleep from about 1:30 till 08:30. Very bad Phantom pain (PLP). The pain got bad so I took 2 Tramacet at 05:00. Tramacet doesn't stop PLP, but it does knock me out. They take a few hours to start working. I slept from 08:30 till after 13:00.
If I google "Lyrica withdrawal side effects" I get about 500,000 hits. Trust me people, Lyrica and Cymgyn (Cybalta) are bad things. They are prescribed so often because Doctors are told they are less risky from a legal perspective than opiates.
There are SOOO many people trying to get off Lyrica and Cybalta. The withdrawal symptoms are terrible, and usually the normal side effects are often worse than the original disease.
If I miss a Lyrica or Cybbalta dose I get the jerks, tingling in my phantom leg, and can't sleep, OR can't stay awake. When things get bad, is when I sleep through the time to take a Lyrica, and the effects start to snowball. Lyrica is very sensitive to under, or over dosing. So taking a Lyrica 3 hours late, means I both under dose, then overdose. I get insomnia mixed with narcolepsy. Duh!!
It doesn't feel quite like narcolepsy. It is more like my brain just shuts down for about 15 minutes. Like a super strong nap attack. But it never quite feels like sleep. Sort of like the brain is deprived of oxygen, and ceases to work. I believe in my case it is neurological, and caused by Lyrica and or Cymgen.
I have spent a very large amount of time to try to figure a mental way to deal with an obvious mental problem. Today I had about 5 of the "nap attacks". My brain would be functioning very well, then within a few minutes, I would get stupid, start slurring my words, and then pass out for 10 - 15 minutes.
While I was in awake mode, the PLP was between bad and very bad. Talking or doing something busy was not as much relief as it had been in the past. I noticed that as I slipped from smart, to stupid, to comatose, My PLP would decrease, and disappear right before I passed out. On awaking the opposite happened. As I gradually became more awake, the pain increased.
I think the Lyrica/Cymgen combination does reduce the PLP. But at a tremendous price.
Do I want the hell of being stupid and fading out, or do I want the hell of pain.
It seem that either way is bad news for me.
--
April 11 10:00
I slept well last night.
I called the PET scan place and asked if I can have a report of the scan. They say I have to see the doctor first, before they will give me the report. My doctor appointment is only for Wednesday afternoon.
So maybe today, I will walk to the mall. Maddie can drive there and we can have lunch. The mall is about 2.5 km away. I should be able to walk that. The road to the mall is a slight downhill. It would be easier for me to walk back home from the mall. Uphills are harder from an energy point of view, but easier from a prosthetic point of view.
The washing machine and Maddie are currently having a conversation. They are bleating at each other.
My buddy gave me some NFC tags. Some are thin like a small band aid. Some are like a key chain. One is smaller than a little finger nail.
If a tag is held very close to my phone, the information on the tag is inputted into my phone. This is the same technology that is used in a passport, and new credit cards. My phone tries to read a passport, but fails. I think the passport is encrypted, or else it is some proprietary protocol.
A friend uses them to change the settings on his phone. He puts a programmed tag in his car, so when he gets into the car, his phone knows to turn on blue tooth, and turn the GPS on. He has another tag near his bed, so when he goes to bed the phone knows to go to silent mode.
They are a wonderful solution to a problem that I have yet to find.
--
Sunday, 10 April 2016
April 9 2016 - Pretoria Botanical Garden
April 10 2016
03:04
As I'm sure you can guess from the time, that PLP has me in it's grip.
We went to bed at about 23:00, and I slept very well till about 1:30 when I got up to pee. As I laid back down the PLP started. Finally at 2:30 I just got up, and moved to the other room, so hopefully Maddie won't be disturbed.
Yesterday (Saturday) we went to the Pretoria Botanical Garden. Very large and well done.
We both really enjoyed walking through the gardens.
My prosthesis is now at a weird stage, where it shrinks very fast during the day. I start the day with just the silicone liner, and soon the socket is to loose. I have to take the leg off, and put a wool sock over the liner to make it bigger to fill the socket, then put the leg back on. On some days I will keep adding socks through out the day. A few days ago, I needed three socks to thicken the stump enough to be able to use the leg.
The socks are special and expensive.
I carry a bag with all my special leg tools in it. I always carry a small spray bottle with a glycerin, alcohol mix to lubricate the leg as I put it on over the stump. I also carry spare socks, a small towel, an allen wrench set, and a tool for adjusting hydraulic movements on the leg.
At the gate to get in the Garden we had to pay. I convinced the cashier that not only was I disabled, but also a pensioner. If I was also a student, they would have had to pay "me" at the gate.
There were many things going on in the garden. three separate weddings, many family picnics, and a few kids parties. We seemed to be the only people there to just look at the gardens.
All throughout the garden were large metal sculptures of different insects. Each was about 2 meters (6 feet) long. Very well done. Here is a mosquito.
They had a special display of ways to save water in a garden. Ways like water tanks, and using mulch.
They also showed many ways of gardening with succulents. Here is one small attractive garden.
They had a display of tricks for disabled people to garden easier. The caption for all the pictures was also done in braille. I wonder if that just explained the picture, or was for the blind people as they looked at the pictures.
Here is Maddie in a posed picture.
And me sitting in the branch of a nice tree.
03:04
As I'm sure you can guess from the time, that PLP has me in it's grip.
We went to bed at about 23:00, and I slept very well till about 1:30 when I got up to pee. As I laid back down the PLP started. Finally at 2:30 I just got up, and moved to the other room, so hopefully Maddie won't be disturbed.
Yesterday (Saturday) we went to the Pretoria Botanical Garden. Very large and well done.
We both really enjoyed walking through the gardens.
My prosthesis is now at a weird stage, where it shrinks very fast during the day. I start the day with just the silicone liner, and soon the socket is to loose. I have to take the leg off, and put a wool sock over the liner to make it bigger to fill the socket, then put the leg back on. On some days I will keep adding socks through out the day. A few days ago, I needed three socks to thicken the stump enough to be able to use the leg.
The socks are special and expensive.
I carry a bag with all my special leg tools in it. I always carry a small spray bottle with a glycerin, alcohol mix to lubricate the leg as I put it on over the stump. I also carry spare socks, a small towel, an allen wrench set, and a tool for adjusting hydraulic movements on the leg.
At the gate to get in the Garden we had to pay. I convinced the cashier that not only was I disabled, but also a pensioner. If I was also a student, they would have had to pay "me" at the gate.
There were many things going on in the garden. three separate weddings, many family picnics, and a few kids parties. We seemed to be the only people there to just look at the gardens.
All throughout the garden were large metal sculptures of different insects. Each was about 2 meters (6 feet) long. Very well done. Here is a mosquito.
They also showed many ways of gardening with succulents. Here is one small attractive garden.
They had a display of tricks for disabled people to garden easier. The caption for all the pictures was also done in braille. I wonder if that just explained the picture, or was for the blind people as they looked at the pictures.
Here is Maddie in a posed picture.
And me sitting in the branch of a nice tree.
I got real good exercise walking on the grass. Uneven ground is a challenge.
Often I would rest on a bench and Maddie would zoom off to take pictures of boring plants.
We stopped at one of the cafes for some coffee and a muffin.
Here is spy Maddie trying to take a secret picture of me at the restaurant. Me taking her picture, must mean I am a counter spy.
At the cafe was a great tree. We both thought it needed it's picture taken.
While walking we passed a flock of Guinea Fowl. A minute later we came across a single male making noise. It looked like he had lost the flock He would stop and make a funny squeak, then look around and listen.
I don't think he was impressed by me being in his way.
We stayed at the Garden for about 4 hours, and I walked about 2 km.
I hope this staying awake doesn't spoil our Sunday plans.
--
Friday, 1 April 2016
April 1 2016 - Long day trip
12:00
On the 28th of March, Maddie and I did a long day trip to many surrounding towns near George.
We drove just over 430 kms (260 miles). We started at 08:00 and got back home at 19:30. I wore the leg the whole day. By the time we got home, I really wanted that leg off.
Our route followed R62. It follows between the Langeberg and Swartberg mountains. That long thin valley is called the "Klein Karoo".
We started by heading north through the Outeniqua pass to Oudtshoorn. Ostrich capital of the world. We tried to get pictures of ostriches. They were shy that day. Here is a picture of Maddie getting ready to sneak up on some, and here is a picture of them running away from Maddie.
On the 28th of March, Maddie and I did a long day trip to many surrounding towns near George.
We drove just over 430 kms (260 miles). We started at 08:00 and got back home at 19:30. I wore the leg the whole day. By the time we got home, I really wanted that leg off.
Our route followed R62. It follows between the Langeberg and Swartberg mountains. That long thin valley is called the "Klein Karoo".
We started by heading north through the Outeniqua pass to Oudtshoorn. Ostrich capital of the world. We tried to get pictures of ostriches. They were shy that day. Here is a picture of Maddie getting ready to sneak up on some, and here is a picture of them running away from Maddie.
A great picture of 8 Ostrich asses.
We then drove to a small town called De Hoop. It wasn't even on the map. Many farmers around the turn of the century would get together and build a big church to serve all the farmers in the area.
Huge church in a town with population 31. The clocks even had the right time.
Often a small town would grow around the isolated church.
De Hoop soon got a railway through it.
I wanted to steal this railroad sign.
The next town we visited was Calitzdorp. It was established 1821 and currently has a population of 4300. Calitzdorp is a very arty, crafty town. It felt like a hippy town. And as usual, it is built around a big church.
At one time in the early 1800's, within the British realm, the determining factor of whether a settlement was a town or a city, was whether or not, it had a Cathedral. The small settlement of George had a Cathedral, and at one time, George was the smallest "city" in the world.
We then passed through the towns of Zoar, and Ladismith.
Ladismith Church, from 1874. (We did not take this picture.)
To the north most of the day was the Swartberg mountains.
And to the South was the Langeberg mountains.
Soon we arrived at the wonderful town of Barrydale.
We stopped for lunch.
Note the dainty little finger. :-)
Barrydale's claim to fame is the fact that it has the Fynbos ecosystem to the South and the Klein Karoo to the North. These two ecosystems are about 10 kilometers apart, with Barrydale in between.
Barrydale is also the start of the Tradouw Pass through the Langeberg mountains.
When we did motorcycle tours, The Tradouw Pass was one of the motorcycling highlights. 17 kilometers of tight, twisty, canyon road.
After the pass, we were now between the Langeberg mountains and the ocean.
We approached the small town of Heidleberg. Of course there was a church.
We both were tired, so we got on the freeway and just went straight back to George.
I had been wearing the leg for 12 hours now, and the stump had shrunk so much it was very hard to walk. The stump was bottoming out in the socket. Back at the house, I took off the leg.
On freeing the stump, the blood rushed in and PLP was there very strong. I quickly washed the stump, and put on a nylon shrink stocking, and took anti-inflamatories. Trying to keep the swelling contained.
We were both very tired, and bed called early. I was battling with PLP. I drugged up and waited. I sat in the kitchen and watched CNN and read my book.
At about 2 in the morning, I SMSed my Texas buddy. He then called me, and we had a wonderful chat for 1hr42min. Having a chat with him, helped take my mind off the PLP. Finally I headed for bed at a bit after 4 in the morning. Awake 22 hours.
At about 6:30 I woke to pee, and got a rush of PLP... really strong. I was not able to reduce it by action or keeping busy.
The best thing for me to do, was drugs, wait, nap,...drugs, wait, nap,......(rinse and repeat). The next 48 hours were a blur.
Now I am sort of recovering. Even with the compression stocking on for 2 days, the stump is swollen.
This pain and drugs life, is just not sustainable.
A teaspoon of pleasure, for a bucket of pain.
I need to try to get the silicon liner on the stump, and maybe go for a short walk.
--
Thursday, 24 March 2016
Mar 24 2016 - Cool rainy day.
14:18
No news from George.
It has rained for 3 days straight. Good because the average rain fall this year is below average.
Last night I tried to go to bed with no drugs. I slept well till 1:00. Then I awoke with very bad PLP. I got up, got dressed, drugged up, went into the kitchen, watched CNN and read my book until about 3:30. Then I slept in a spare room so as not to wake Maddie.
Belgium and France have both been bending over backwards to assimilate the muslim population into their society. Obama would like to do the same thing for the USA.
Hey Belgium!...How is that working out for you?
I want to read my book now, but it is way over on the other side of the room.
My cell phone is on charge.
I have had 2 cups of coffee today.
It has rained for 3 days straight.
That's all the exciting news, the rest is boring.
Maddie just went to bed to get under the duvet and read her book. Smart Lady. I am going to follow.
--
No news from George.
It has rained for 3 days straight. Good because the average rain fall this year is below average.
Last night I tried to go to bed with no drugs. I slept well till 1:00. Then I awoke with very bad PLP. I got up, got dressed, drugged up, went into the kitchen, watched CNN and read my book until about 3:30. Then I slept in a spare room so as not to wake Maddie.
Belgium and France have both been bending over backwards to assimilate the muslim population into their society. Obama would like to do the same thing for the USA.
Hey Belgium!...How is that working out for you?
I want to read my book now, but it is way over on the other side of the room.
My cell phone is on charge.
I have had 2 cups of coffee today.
It has rained for 3 days straight.
That's all the exciting news, the rest is boring.
Maddie just went to bed to get under the duvet and read her book. Smart Lady. I am going to follow.
--
Thursday, 17 March 2016
Mar 17 - Lackadaisicalness
20:10
Not much to blog about. I have been feeling very un-connected to the real world.
Today I walked 3.35 km in 1:07. Thats 3 km/hr. A new dan record.
We sure seem to be busy all the time. I carried my latest book around for a week, and I was 5 pages from the end. The hero was about to die and the lady hero was trying to save him. I just couldn't be bothered to finish it.
I blame my drugs for the lackadaisicalness. But the alternative is worse PLP. Talk about hard decisions.
Common side effects of Lyrica include dizziness, drowsiness, loss of balance or coordination, dry mouth, constipation, edema, breast swelling, tremors, blurred vision, weight gain, and problems with memory or concentration.
Common side effects of Cymgen (Cymbalta) are Nausea, dry mouth, constipation, loss of appetite, tiredness, drowsiness.
Both drugs are very hard to get off of, and the withdrawal on both is supposed to be terrible.
I read about one of these.
http://powersports.honda.com/2013/vfr1200f.aspx
It is a motorcycle with an automatic transmission.
I had a blood test yesterday. I got the results today. All looks OK. Maddie has been feeding me well.
I tried to call the oncologist today, but she was busy both times. She will call me. After 3 weeks I was supposed to have an interview with her, but I am not in Pretoria, so I will have to call.
Africa is worried about Trump. He has said that weak people should not concern strong people, because they are weak. Also that strong people should not care what weak people think. I bet he would feel the same with countries.
--
Not much to blog about. I have been feeling very un-connected to the real world.
Today I walked 3.35 km in 1:07. Thats 3 km/hr. A new dan record.
We sure seem to be busy all the time. I carried my latest book around for a week, and I was 5 pages from the end. The hero was about to die and the lady hero was trying to save him. I just couldn't be bothered to finish it.
I blame my drugs for the lackadaisicalness. But the alternative is worse PLP. Talk about hard decisions.
Common side effects of Lyrica include dizziness, drowsiness, loss of balance or coordination, dry mouth, constipation, edema, breast swelling, tremors, blurred vision, weight gain, and problems with memory or concentration.
Common side effects of Cymgen (Cymbalta) are Nausea, dry mouth, constipation, loss of appetite, tiredness, drowsiness.
Both drugs are very hard to get off of, and the withdrawal on both is supposed to be terrible.
I read about one of these.
http://powersports.honda.com/2013/vfr1200f.aspx
It is a motorcycle with an automatic transmission.
I had a blood test yesterday. I got the results today. All looks OK. Maddie has been feeding me well.
I tried to call the oncologist today, but she was busy both times. She will call me. After 3 weeks I was supposed to have an interview with her, but I am not in Pretoria, so I will have to call.
Africa is worried about Trump. He has said that weak people should not concern strong people, because they are weak. Also that strong people should not care what weak people think. I bet he would feel the same with countries.
--
Thursday, 18 February 2016
Feb 18 - Wasted day
19:30
Yesterday's 15th Chemo was nominal. I chatted lots with a fat lady. She had lymphoma cancer.
Afterwards, it was pouring with rain. I couldn't even see the parking lot from the doors, so I sat in the hospital cafe and ate lots.
I had a bad night after chemo, and only got to bed after 3:30. Lots of Phantom Pain. I think the physio session made the pain worse.
It works much better to just stay up till I am falling asleep, then go to bed. That saying "bed is for sleep only" works well.
I only awoke this morning at 10:30. I have had many 1 and 2 hour naps today. I had a long list of things to do, but I never even got my leg on, or opened the front door. All I have eaten today is one peanut butter sandwich.
I need to start getting ready for the George trip. I wanted to start the beetle, get the tool set out of it and put it in the Atos. The Atos horn stopped yesterday while I was using it. Internet says probably bad steering wheel airbag ... $$$. I'm hoping for a loose wire.
I laid down after almost falling out of my wheel chair at 15:00. I try to stop the wheel chair with something soft in front of me. I just got up at 19:00. Sleep will be hard to come tonight.
--
Yesterday's 15th Chemo was nominal. I chatted lots with a fat lady. She had lymphoma cancer.
Afterwards, it was pouring with rain. I couldn't even see the parking lot from the doors, so I sat in the hospital cafe and ate lots.
I had a bad night after chemo, and only got to bed after 3:30. Lots of Phantom Pain. I think the physio session made the pain worse.
It works much better to just stay up till I am falling asleep, then go to bed. That saying "bed is for sleep only" works well.
I only awoke this morning at 10:30. I have had many 1 and 2 hour naps today. I had a long list of things to do, but I never even got my leg on, or opened the front door. All I have eaten today is one peanut butter sandwich.
I need to start getting ready for the George trip. I wanted to start the beetle, get the tool set out of it and put it in the Atos. The Atos horn stopped yesterday while I was using it. Internet says probably bad steering wheel airbag ... $$$. I'm hoping for a loose wire.
I laid down after almost falling out of my wheel chair at 15:00. I try to stop the wheel chair with something soft in front of me. I just got up at 19:00. Sleep will be hard to come tonight.
--
Monday, 25 January 2016
Jan 23-24-25 - More Phantom Pain
Jan 23 23:15
Last night was a drug night. Lots of phantom pain. But an excess of drugs seems to be the only thing that works. I need an "unconscious"pill. When the phantom pain comes, I don't want consciousness. If I can't stop the pain, I want to stop thought.
I don't seem to have phantom pain when I am walking or when I am busy. It comes when I am relaxed, or bored. Wearing the prosthetic leg for long periods seems to make it worse later on. Also when I walk lots, and get tired, it seems to be worse a few hours later. I remember before the prosthesis, when I would crutch lots, I would have phantom pain later that evening. Maybe I need to take tomorrow off, and let the stump just rest the whole day and see if the pain is less in the evening.
One thing I forgot to mention the other day about employment disability, is chronic pain. The use of narcotics and strong pain killers to stop pain is as bad for an employer as the physical inability of an employee to do a job related task. So even if the physical amputation does not result is being "officially" disabled, the use of drugs for phantom pain can make you "officially" disabled.
--
My friend and I went to the big mall today. They have expanded the mall with about 20 new stores in a new section. We ate and chatted at a restaurant that I used to enjoy. Now it is very big. I think I will spend lots of money there.
My friend was explaining about a network security misconfiguration he has been dealing with. I listened, and understood all that he said, but I could not put it all together to understand why it was bad. He explained it many times in different ways. My intelligence was just to low. I almost started crying. It was so sad.
I figured that I would be able to do all the computer network related things I used to do. After all, cancer, and a leg amputation doesn't stop computer use. But the phantom pain does. With the drugs I take to be able to sleep, my mind is too fuzzy to be of any use when real thinking is required.
--
I have been reading lots about Doctors trying to use prosthetics to relieve phantom pain. One good article said:
Phantom Limb Pain (PLP) causes important disabilities to many of those living with it. It has been shown that PLP has a negative impact on people's social participation and health-related quality of life.
Moreover, some studies suggest that pain could be associated with difficulties with the prosthesis and could be a reason for prosthesis abandonment. However, the association between prosthesis use and PLP remains unclear because negative, positive, or no association has been found between these two variables in different studies.
On guy said the following, which sounds very much like me:
"PLP does not change, except that when I wear my prosthesis and I work on machinery, on tractors, I think about what I'm doing and less about it [PLP]. When I sit, in the evening, it is more painful. When I'm not active, it is more painful. So it has to be drowned in something, in work." [Patient 9–43 years of experience]
The article also said:
One Professional reported that the prosthesis allows patients to engage in significant activities that often direct their attention away from their PLP. She also suggested that the prosthesis may have a normalizing effect by allowing patients to use their amputated limb which could contribute to decreasing PLP. However, three health professionals also said that the prosthesis can increase PLP when it is poorly adjusted, when it stimulates a trigger point, or when it is too heavy. Moreover, one of them reported, as did the patients, that after wearing the prosthesis for many hours, PLP seems to increase.
One good thing this article taught me was to write PLP instead of writing out phantom pain. :-)
--
Sunday 24 Jan 11:00
I just got out of bed. I had a good 12 hour drug induced sleep.
Cancer, then loosing a leg, then phantom pain, now loosing my intelligence.
There are many battles in this war of life. Sometimes I am not sure which battle I am currently fighting.
Today I am not using the prosthetic leg. Wearing it seems to make the phantom pain worse, which means more drugs, which means more stupid.
I have a choice: Interact with the physical world, or interact with the mental world. Choose one. :-(
--
Monday 25 Jan 00:20
Lots of PLP. I spent the whole day laying in bed, or sitting in the wheel chair. No crutching, and no prosthetic leg. Tonight at 20:00 I only took a celebrex. No lyrica. I then took a 25 mg Tripiline. Hoping that I would be able to sleep without strong stupid making pills.
But by 23:00 I was in pain. I don't want to read, or play Sudoku, or play computer. It just hurts. My left toes are cramping bad. I took a muscle relaxer.
at 00:10 I took 2 Tramacet pain pills.
As usual when there is pain now, you want to take more drugs because the pain is worst, and you want relief NOW. I think the smart thing is to take lots of pills, but take them plenty early, so the PLP never gets a head start. But ...It hurts NOW!
I don't know why they don't make an "unconscious" pill. That would work great for chronic pain.
It is 01:40 and I guess I'll just publish this.
--
Last night was a drug night. Lots of phantom pain. But an excess of drugs seems to be the only thing that works. I need an "unconscious"pill. When the phantom pain comes, I don't want consciousness. If I can't stop the pain, I want to stop thought.
I don't seem to have phantom pain when I am walking or when I am busy. It comes when I am relaxed, or bored. Wearing the prosthetic leg for long periods seems to make it worse later on. Also when I walk lots, and get tired, it seems to be worse a few hours later. I remember before the prosthesis, when I would crutch lots, I would have phantom pain later that evening. Maybe I need to take tomorrow off, and let the stump just rest the whole day and see if the pain is less in the evening.
One thing I forgot to mention the other day about employment disability, is chronic pain. The use of narcotics and strong pain killers to stop pain is as bad for an employer as the physical inability of an employee to do a job related task. So even if the physical amputation does not result is being "officially" disabled, the use of drugs for phantom pain can make you "officially" disabled.
--
My friend and I went to the big mall today. They have expanded the mall with about 20 new stores in a new section. We ate and chatted at a restaurant that I used to enjoy. Now it is very big. I think I will spend lots of money there.
My friend was explaining about a network security misconfiguration he has been dealing with. I listened, and understood all that he said, but I could not put it all together to understand why it was bad. He explained it many times in different ways. My intelligence was just to low. I almost started crying. It was so sad.
I figured that I would be able to do all the computer network related things I used to do. After all, cancer, and a leg amputation doesn't stop computer use. But the phantom pain does. With the drugs I take to be able to sleep, my mind is too fuzzy to be of any use when real thinking is required.
--
I have been reading lots about Doctors trying to use prosthetics to relieve phantom pain. One good article said:
Phantom Limb Pain (PLP) causes important disabilities to many of those living with it. It has been shown that PLP has a negative impact on people's social participation and health-related quality of life.
Moreover, some studies suggest that pain could be associated with difficulties with the prosthesis and could be a reason for prosthesis abandonment. However, the association between prosthesis use and PLP remains unclear because negative, positive, or no association has been found between these two variables in different studies.
On guy said the following, which sounds very much like me:
"PLP does not change, except that when I wear my prosthesis and I work on machinery, on tractors, I think about what I'm doing and less about it [PLP]. When I sit, in the evening, it is more painful. When I'm not active, it is more painful. So it has to be drowned in something, in work." [Patient 9–43 years of experience]
The article also said:
One Professional reported that the prosthesis allows patients to engage in significant activities that often direct their attention away from their PLP. She also suggested that the prosthesis may have a normalizing effect by allowing patients to use their amputated limb which could contribute to decreasing PLP. However, three health professionals also said that the prosthesis can increase PLP when it is poorly adjusted, when it stimulates a trigger point, or when it is too heavy. Moreover, one of them reported, as did the patients, that after wearing the prosthesis for many hours, PLP seems to increase.
One good thing this article taught me was to write PLP instead of writing out phantom pain. :-)
--
Sunday 24 Jan 11:00
I just got out of bed. I had a good 12 hour drug induced sleep.
Cancer, then loosing a leg, then phantom pain, now loosing my intelligence.
There are many battles in this war of life. Sometimes I am not sure which battle I am currently fighting.
Today I am not using the prosthetic leg. Wearing it seems to make the phantom pain worse, which means more drugs, which means more stupid.
I have a choice: Interact with the physical world, or interact with the mental world. Choose one. :-(
--
Monday 25 Jan 00:20
Lots of PLP. I spent the whole day laying in bed, or sitting in the wheel chair. No crutching, and no prosthetic leg. Tonight at 20:00 I only took a celebrex. No lyrica. I then took a 25 mg Tripiline. Hoping that I would be able to sleep without strong stupid making pills.
But by 23:00 I was in pain. I don't want to read, or play Sudoku, or play computer. It just hurts. My left toes are cramping bad. I took a muscle relaxer.
at 00:10 I took 2 Tramacet pain pills.
As usual when there is pain now, you want to take more drugs because the pain is worst, and you want relief NOW. I think the smart thing is to take lots of pills, but take them plenty early, so the PLP never gets a head start. But ...It hurts NOW!
I don't know why they don't make an "unconscious" pill. That would work great for chronic pain.
It is 01:40 and I guess I'll just publish this.
--
Saturday, 28 November 2015
Day 113 - Fat and Pain
11:45
I slept well, and was up at 07:30, with little pain. I had breakfast, then needed a nap, and slept till 11:00.
Maddie sorted out the plane tickets to George. What a hassle. We are both booked to George on the 4th of Dec. I am coming back alone on the 13th. It is such a hassle getting all the forms filled out for special needs air travel.
I will rent a wheelchair there in George. It is R80 a week. ($5.80) You can tell George is a small town when it costs less than a dollar a day to rent a wheelchair.
The same company also sells wheelchairs. We will shop there and maybe get a bargain. :-)
17:00
I just crutched 1.62km (1 mile). I could have kept going, but I got bored. I am definitely getting stronger.
22:00
I am having one of the worst bouts of phantom pain. Maddie always says that exercise brings the pain.
This morning I weighed 82.5. Right after amputation, I weighed 77.8. That is almost 5 kg (10.4pds) in less than a month. All fat. Mostly in my tits, and gut.
I used to do much more exercise, and I used to eat far less. So tomorrow, I will start eating about half of what I have eaten in the last few days. I need to crutch lots more, and stop being a slug.
I just took a double dose of pain pills. They don't help that much with the pain, but they do tend to knock me out.
I hate the bed. Any time I am awake in bed, it is because there is phantom pain. If I am asleep, then I have no pain.
Consciousness + Bed = Pain
--
The French Angiosarcoma Unit released a good report in 2011.
http://annonc.oxfordjournals.org/content/early/2011/05/12/annonc.mdr138.full
It does good comparisons of the different chemo treatments.
It looks like weekly Paclitaxel is the best that modern science can offer for angiosarcoma patients.
Yet right now, I am concerned with phantom pain. The elephant is not here now.
--
I slept well, and was up at 07:30, with little pain. I had breakfast, then needed a nap, and slept till 11:00.
Maddie sorted out the plane tickets to George. What a hassle. We are both booked to George on the 4th of Dec. I am coming back alone on the 13th. It is such a hassle getting all the forms filled out for special needs air travel.
I will rent a wheelchair there in George. It is R80 a week. ($5.80) You can tell George is a small town when it costs less than a dollar a day to rent a wheelchair.
The same company also sells wheelchairs. We will shop there and maybe get a bargain. :-)
17:00
I just crutched 1.62km (1 mile). I could have kept going, but I got bored. I am definitely getting stronger.
22:00
I am having one of the worst bouts of phantom pain. Maddie always says that exercise brings the pain.
This morning I weighed 82.5. Right after amputation, I weighed 77.8. That is almost 5 kg (10.4pds) in less than a month. All fat. Mostly in my tits, and gut.
I used to do much more exercise, and I used to eat far less. So tomorrow, I will start eating about half of what I have eaten in the last few days. I need to crutch lots more, and stop being a slug.
I just took a double dose of pain pills. They don't help that much with the pain, but they do tend to knock me out.
I hate the bed. Any time I am awake in bed, it is because there is phantom pain. If I am asleep, then I have no pain.
Consciousness + Bed = Pain
--
The French Angiosarcoma Unit released a good report in 2011.
http://annonc.oxfordjournals.org/content/early/2011/05/12/annonc.mdr138.full
It does good comparisons of the different chemo treatments.
It looks like weekly Paclitaxel is the best that modern science can offer for angiosarcoma patients.
Yet right now, I am concerned with phantom pain. The elephant is not here now.
--
Tuesday, 24 November 2015
Day 109 - Wheelchair and phantom_pain
Last night was a pain night till about 12:00, then sleep.
It is difficult to remember the angiosarcoma while in pain from phantom pain.
This morning I wanted to crutch to the small shopping center near my home and have breakfast.
We decided that Maddie would drive there in case I needed help. The distance was .9km. After breakfast we went to the blood test place. We will get the results tomorrow morning before chemo.
This morning I wanted to crutch to the small shopping center near my home and have breakfast.
We decided that Maddie would drive there in case I needed help. The distance was .9km. After breakfast we went to the blood test place. We will get the results tomorrow morning before chemo.
I am sure I could repeatably crutch to the shopping center. As soon as I can do 2km in one walk, I will try the shopping center and back to the house.
My Brother sent me a package from the USA. In it was a watch. It is a single hand, pure mechanical, wind up watch made in Russia. Super cool.
In the package was also goodies from the http://www.cureasc.org web site.
A shopping bag, a small flashlight (torch), and 3 bracelets.
We went shopping for a good office chair. We found a good one for R6100.00. Shriek! Nice chair, but I could see me computing the cost per sit down.
We then decided to not buy a chair because once the prosthesis socket is on, the whole dynamics of the leg on the chair will change. We might buy something that makes sense now, but is wrong in a month or two.
Also an office chair may be a problem with a prosthesis because the prosthesis will just drag on the floor without someplace to place the foot.
We also decided to try a wheelchair in the house, and see if maybe one would suffice. We used the old beat up one that the prosthesis place loaned us.
It works better than I thought it would. I can zoom around like in an office chair, without the possibility of falling over. A wheel chair will go into the bathroom, and with the grab bars I can get up and down safely. Also getting into and out of bed is easy. It may be a better "in house" mobility chair than an office chair. A good wheelchair costs R3000. About half price of an office chair. It could also be used in a trip to the mall, or going outside in the yard.
I am having lots of phantom pain right now. It is like the bottom of my foot is cramping, and curling the toes under the foot. Very painful.
I dread going to bed.
Bed sucks.
--
Saturday, 21 November 2015
Day 106 - A bed ridden Saturday
13:00
I slept lots. No pain while asleep.
We were in bed at 23:30 last night. I woke up at 08:00 and had a smoothie, then laid down, and just got up at 13:00. 15 of last 16 hours sleeping.
Now I have phantom pain. It stops when I sleep. It is strong when I try to fall asleep.
When I crutch around, I am unsteady. Like my balance is off.
The long crutches are much better for around the house. They are more stable, and they allow hands free when stopped. But the short ones are much better for going places. The short ones allow you to pick up the crutch tip. Great for uneven ground.
Maddie has been doing laundry and cleaning. She works while I sleep.
--
22:30
I never went outside today. It was a beautiful day. I wasted it in bed.
Just showered. Now lots of pain. Actually not 'lots' of pain. Maybe a 3 or 4. Just enough to make sleep difficult.
I think that anytime blood pressure in the stump is high , I have more pain. Exercise, and hanging the stump seem to make it worse. This day of sleep has kept the stump swelling down.
I read that if you make your good foot toes curl up, like trying to grip the carpet with your toes, that the phantom pain goes away. It really does work, but the pain comes back real quick.
I will ask the wound care lady on Monday if we can start wrapping it to keep swelling down. I tried wrapping the stump this morning like the prosthesis guy showed me, but we don't have the correct bandages.
I have been constipated the last few days. I blame all the pills. A side effect of each pill is constipation. Combining pills makes it worse. The best cure is a syrup that lubricates, rather than something that makes the bowels secrete water.
I can't believe I just shared my turd problems in the blog.
--
I slept lots. No pain while asleep.
We were in bed at 23:30 last night. I woke up at 08:00 and had a smoothie, then laid down, and just got up at 13:00. 15 of last 16 hours sleeping.
Now I have phantom pain. It stops when I sleep. It is strong when I try to fall asleep.
When I crutch around, I am unsteady. Like my balance is off.
The long crutches are much better for around the house. They are more stable, and they allow hands free when stopped. But the short ones are much better for going places. The short ones allow you to pick up the crutch tip. Great for uneven ground.
Maddie has been doing laundry and cleaning. She works while I sleep.
--
22:30
I never went outside today. It was a beautiful day. I wasted it in bed.
Just showered. Now lots of pain. Actually not 'lots' of pain. Maybe a 3 or 4. Just enough to make sleep difficult.
I think that anytime blood pressure in the stump is high , I have more pain. Exercise, and hanging the stump seem to make it worse. This day of sleep has kept the stump swelling down.
I read that if you make your good foot toes curl up, like trying to grip the carpet with your toes, that the phantom pain goes away. It really does work, but the pain comes back real quick.
I will ask the wound care lady on Monday if we can start wrapping it to keep swelling down. I tried wrapping the stump this morning like the prosthesis guy showed me, but we don't have the correct bandages.
I have been constipated the last few days. I blame all the pills. A side effect of each pill is constipation. Combining pills makes it worse. The best cure is a syrup that lubricates, rather than something that makes the bowels secrete water.
I can't believe I just shared my turd problems in the blog.
--
Saturday, 7 November 2015
Day 93 - Stairs at the mall
We slept well and I got up late. Maddie was waiting to make breakfast.
I still have lots of Phantom Pain. It causes my legs to spasm and shake. The Phantom Pain seems less if I am real busy, or asleep. That again makes me think it is mental, not physical.
We decided to do some shopping. We are low on veggies. Maddie drove us to a nearby shopping center. It is laid out like a huge strip mall. It is about 1 km long and on 3 levels.
She dropped me at the lowest end, and we would meet at the car near the top end. She would shop, and I would crutch.
I started at the lowest end of the mall, and climbed up the stairs, then went down the stairs, then back up the stairs. The stairs are right next to the escalator, so few people were using the stairs.
An old man stopped and asked me if I was practicing. I said yes. He said that my technique looked good, but I need to work on strength. Then he walked off.
The next obstacle was an escalator that was out of service. There were no elevator or stairs visible. The downward stream of people coming down the escalator made it hard for the up people to push past. Me going up would jam the whole thing for a few minutes.
I stopped a guy that collects the used shopping trolleys from the parking lot. I greeted him in Setswana, hoping he wasn't Zulu. We traded pleasantries, then I asked him where the stairs were. He walked and showed me. When he left he parted with the phrase. "Hamba Gahle N'Kosi". That is Zulu for "Travel well my King". That was nice. :-)
Another level of stairs and I was on the final level. I found the beetle and sat inside. I was tired, and my good leg was tired.
Today is a dry, windy, clear, hot day. Temp is 32C (90F). The dark green beetle heated up quickly. When Maddie got to the car we both decided to head home, and do veggie shopping another day.
At home I got the shakes. I took a muscle relaxer, and 2 pain pills. Maddie massaged my stump for awhile. The phantom pain stays away while the stump is being massaged. This proves that phantom pain is physical.
I went to bed and slept for an hour. I awoke to no Phantom Pain. Maddie had lunch ready, and we sat down, Then the Pain started up. It has to be mental if it stops when I sleep. Maybe I just need to be unconscious the rest of my life to remain pain free. There has to be a trigger to start the pain. There also has to be a mental state of mind that tells the pain to take a break. Then there must be a trigger to start the pain.
--
21:00
I am getting ready to shower. Showers are nightmare.
On Monday morning a Handyman is coming to quote on redoing the shower. He will also quote on putting up bed rails, and more grab bars in the bathroom. I want to replace all towel rails with grab bars, and use them as towel rails.
I need to work on the mental aspects of Phantom Pain. I am sure that somewhere is a switch to stop it. I have read many good articles on Phantom Pain .
http://brain.oxfordjournals.org/content/126/3/579
http://www.bbc.com/future/story/20140708-the-man-who-treats-phantom-pain
It seems that when I am unconscious, that there is no pain. It does not wake me up. Some times physical stump pain wakes me, but not the Phantom Pain. When I awake, there is no pain for up to a minute, then it starts. Sometimes when I am very busy doing something, there is no Phantom Pain. Like today on the stairs.
Now to shower....
--
I still have lots of Phantom Pain. It causes my legs to spasm and shake. The Phantom Pain seems less if I am real busy, or asleep. That again makes me think it is mental, not physical.
We decided to do some shopping. We are low on veggies. Maddie drove us to a nearby shopping center. It is laid out like a huge strip mall. It is about 1 km long and on 3 levels.
She dropped me at the lowest end, and we would meet at the car near the top end. She would shop, and I would crutch.
I started at the lowest end of the mall, and climbed up the stairs, then went down the stairs, then back up the stairs. The stairs are right next to the escalator, so few people were using the stairs.
An old man stopped and asked me if I was practicing. I said yes. He said that my technique looked good, but I need to work on strength. Then he walked off.
The next obstacle was an escalator that was out of service. There were no elevator or stairs visible. The downward stream of people coming down the escalator made it hard for the up people to push past. Me going up would jam the whole thing for a few minutes.
I stopped a guy that collects the used shopping trolleys from the parking lot. I greeted him in Setswana, hoping he wasn't Zulu. We traded pleasantries, then I asked him where the stairs were. He walked and showed me. When he left he parted with the phrase. "Hamba Gahle N'Kosi". That is Zulu for "Travel well my King". That was nice. :-)
Another level of stairs and I was on the final level. I found the beetle and sat inside. I was tired, and my good leg was tired.
Today is a dry, windy, clear, hot day. Temp is 32C (90F). The dark green beetle heated up quickly. When Maddie got to the car we both decided to head home, and do veggie shopping another day.
At home I got the shakes. I took a muscle relaxer, and 2 pain pills. Maddie massaged my stump for awhile. The phantom pain stays away while the stump is being massaged. This proves that phantom pain is physical.
I went to bed and slept for an hour. I awoke to no Phantom Pain. Maddie had lunch ready, and we sat down, Then the Pain started up. It has to be mental if it stops when I sleep. Maybe I just need to be unconscious the rest of my life to remain pain free. There has to be a trigger to start the pain. There also has to be a mental state of mind that tells the pain to take a break. Then there must be a trigger to start the pain.
--
21:00
I am getting ready to shower. Showers are nightmare.
On Monday morning a Handyman is coming to quote on redoing the shower. He will also quote on putting up bed rails, and more grab bars in the bathroom. I want to replace all towel rails with grab bars, and use them as towel rails.
I need to work on the mental aspects of Phantom Pain. I am sure that somewhere is a switch to stop it. I have read many good articles on Phantom Pain .
http://brain.oxfordjournals.org/content/126/3/579
http://www.bbc.com/future/story/20140708-the-man-who-treats-phantom-pain
It seems that when I am unconscious, that there is no pain. It does not wake me up. Some times physical stump pain wakes me, but not the Phantom Pain. When I awake, there is no pain for up to a minute, then it starts. Sometimes when I am very busy doing something, there is no Phantom Pain. Like today on the stairs.
Now to shower....
--
Tuesday, 3 November 2015
Day 89 - Reality of Phantom Pain.
09:00
Yesterday afternoon I had way to much pain. I couldn't function, I got the shakes with the pain, and that was all the world for me. Pain sure focuses the mind. There are no longer world problems. ISIS, Nuclear Iran, US dept, Global warming, and Government interference. All these thing were trivial and could affect me not. My world was Pain, Pain, Pain.
Poor Maddie. She so wanted to help me, but what could she possibly do?
We finally just gave in to the drugs. Thankfully we had prepared emergency pill food. All the pills must be taken with food. I took max of all pain killers, muscle relaxers, and neural blockers. 30 minutes later I fell asleep in a chair. Three hours later I crawled into bed, and sat up on the new wedge we bought. I stayed unmoving for 4 hours, then around midnight, finally laid down. I got up at around 8 this morning. 17 hours removed from my life.
What would I have done without Maddie? I can't imagine. Probably just laid on a very urine soaked bed for 17 hours, and got stomach ulcers of note. Thank You Maddie.
--
11:00
This whole phantom pain is a subject, that even the internet seem to be ignorant of.
I have read many doctor reports, clinical trials, and "cures" for phantom pain on the internet. The only written words that seem even remotely connected to reality, is from amputation bloggers. They may not have any medical training, but they have been there. They understand more about phantom pain than any doctor can ever understand.
I like the word "Grok". That is when your knowledge of a subject is so extensive, that it has become instinctive. No conscious thought is necessary to understand the subject. The knowledge is no longer just mental understanding, but it resides deep in the soul.
No doctor will ever grok phantom pain, unless he looses a limb.
I have spent days analyzing and trying to figure out this phantom pain. It can hurt so bad, yet the pain is focused on something that doesn't exist.
When a lover dumps you, and walks away, the pain can be bad, and that is also not a physical pain.
When you are driving along, and some idiot cuts in front of you, almost causing a collision, a strong, gross, emotional sensation develops quickly. There is no physical reason for the strong anger felt.
If it is not physical, then, it must be in the mind.
I did Transcendental Meditation for 17 years, and Buddhist Vipassana meditation for the last 6 years. Add to this many years of fighting many types of pain, and this Phantom has met its match.
Some of the cause of phantom pain is from actual stimulation of nerve endings left over from the amputation. This pain is difficult to isolate and focus on. Mainly because the pain is not felt at the source of the pain.
For years, I have had many problems with sciatica pain from my bad back. There again, the pain is felt in the back of my leg, but is caused by the pinching of nerves in the spine. Do I try to fight this at the spine that doesn't hurt at all, or the leg which is not the source of the pain? Sciatica is very difficult to deal with mentally.
If it is all in the mind, then it has a problem, because it has met a worthy opponent. I am very good at mind defense and warfare. This phantom pain is in the same threat category as sciatica.
One of the tools Vipassana has taught me is "Equanimity".
By mentally "sweeping" over the entire body, you can note any sensations, both negative (pain) and positive (pleasurable). By noting any sensation, and concentrating and understanding it, it is possible that on the next "sweep", that sensation is no longer detectable. We call that - Equanimitization. A sensation (pain) that has been equanimitized is no longer detectable by the senses.
In Vipassana, we would sit motionless for about 120 hours on a 10 day course. A lot of pain builds up in the back and knees. I got pretty good with equanimity of pain. The better you get with practice, the better you can equanimitize stronger pain. Soon, even gross, solidified sensations become impermanent.
You soon learn that everything, is impermanent.
This technique is used by people like David Blaine. He held his breath for 17 minutes and 4 seconds live on Oprah. The choking, gasping feeling, you get when holding your breath is not a lack of oxygen. It is a carbon dioxide poisoning alarm the body gives. This alarm can be equanimitized.
This skill can also be applied to nonphysical sensations. Fear, sadness or when someone does something that angers you. Instead of a reactive emotion, you can respond with equanimity, and not get angry, because their action becomes a non-event.
Trying to equanimitize sciatica or Phantom pain is a whole different level than simple physical pain. That is a skill I will be working on for the next few days. I may not be able to stop the pain, but I should be able to stop the suffering.
Pain is inevitable, suffering is optional.
Equanimity is one of many mental weapons to fight this Phantom. Some weapons are powerful, requiring strong concentration, and some are weaker, but easier to use.
Phantom Pain, Standby for Bolo!
--
Yesterday afternoon I had way to much pain. I couldn't function, I got the shakes with the pain, and that was all the world for me. Pain sure focuses the mind. There are no longer world problems. ISIS, Nuclear Iran, US dept, Global warming, and Government interference. All these thing were trivial and could affect me not. My world was Pain, Pain, Pain.
Poor Maddie. She so wanted to help me, but what could she possibly do?
We finally just gave in to the drugs. Thankfully we had prepared emergency pill food. All the pills must be taken with food. I took max of all pain killers, muscle relaxers, and neural blockers. 30 minutes later I fell asleep in a chair. Three hours later I crawled into bed, and sat up on the new wedge we bought. I stayed unmoving for 4 hours, then around midnight, finally laid down. I got up at around 8 this morning. 17 hours removed from my life.
What would I have done without Maddie? I can't imagine. Probably just laid on a very urine soaked bed for 17 hours, and got stomach ulcers of note. Thank You Maddie.
--
11:00
This whole phantom pain is a subject, that even the internet seem to be ignorant of.
I have read many doctor reports, clinical trials, and "cures" for phantom pain on the internet. The only written words that seem even remotely connected to reality, is from amputation bloggers. They may not have any medical training, but they have been there. They understand more about phantom pain than any doctor can ever understand.
I like the word "Grok". That is when your knowledge of a subject is so extensive, that it has become instinctive. No conscious thought is necessary to understand the subject. The knowledge is no longer just mental understanding, but it resides deep in the soul.
No doctor will ever grok phantom pain, unless he looses a limb.
I have spent days analyzing and trying to figure out this phantom pain. It can hurt so bad, yet the pain is focused on something that doesn't exist.
When a lover dumps you, and walks away, the pain can be bad, and that is also not a physical pain.
When you are driving along, and some idiot cuts in front of you, almost causing a collision, a strong, gross, emotional sensation develops quickly. There is no physical reason for the strong anger felt.
If it is not physical, then, it must be in the mind.
I did Transcendental Meditation for 17 years, and Buddhist Vipassana meditation for the last 6 years. Add to this many years of fighting many types of pain, and this Phantom has met its match.
Some of the cause of phantom pain is from actual stimulation of nerve endings left over from the amputation. This pain is difficult to isolate and focus on. Mainly because the pain is not felt at the source of the pain.
For years, I have had many problems with sciatica pain from my bad back. There again, the pain is felt in the back of my leg, but is caused by the pinching of nerves in the spine. Do I try to fight this at the spine that doesn't hurt at all, or the leg which is not the source of the pain? Sciatica is very difficult to deal with mentally.
If it is all in the mind, then it has a problem, because it has met a worthy opponent. I am very good at mind defense and warfare. This phantom pain is in the same threat category as sciatica.
One of the tools Vipassana has taught me is "Equanimity".
By mentally "sweeping" over the entire body, you can note any sensations, both negative (pain) and positive (pleasurable). By noting any sensation, and concentrating and understanding it, it is possible that on the next "sweep", that sensation is no longer detectable. We call that - Equanimitization. A sensation (pain) that has been equanimitized is no longer detectable by the senses.
In Vipassana, we would sit motionless for about 120 hours on a 10 day course. A lot of pain builds up in the back and knees. I got pretty good with equanimity of pain. The better you get with practice, the better you can equanimitize stronger pain. Soon, even gross, solidified sensations become impermanent.
You soon learn that everything, is impermanent.
This technique is used by people like David Blaine. He held his breath for 17 minutes and 4 seconds live on Oprah. The choking, gasping feeling, you get when holding your breath is not a lack of oxygen. It is a carbon dioxide poisoning alarm the body gives. This alarm can be equanimitized.
This skill can also be applied to nonphysical sensations. Fear, sadness or when someone does something that angers you. Instead of a reactive emotion, you can respond with equanimity, and not get angry, because their action becomes a non-event.
Trying to equanimitize sciatica or Phantom pain is a whole different level than simple physical pain. That is a skill I will be working on for the next few days. I may not be able to stop the pain, but I should be able to stop the suffering.
Pain is inevitable, suffering is optional.
Equanimity is one of many mental weapons to fight this Phantom. Some weapons are powerful, requiring strong concentration, and some are weaker, but easier to use.
Phantom Pain, Standby for Bolo!
--
Sunday, 1 November 2015
Day 87 - Pain 101
I slept OK, not well. I still have bad phantom pain. The pain is till my broken toes on the missing leg.
Maddie wanted to go to Church this morning, so she was busy with the typical woman fluffing hair routine. She did look nice though.
While she was busy getting ready, I made myself a cup of coffee for the first time in weeks. The biggest problem was moving the full cup to the computer. During this comedy skit, I dropped a crutch. What a mission. I finally ended up smacking the fallen crutch with the other crutch till it got jammed on a cupboard, and I was able to get it up to my hip and grab it.
I was unable to move the coffee cup without spilling, so I found a travel mug that has a lid. I decanted the coffee into it, then sort of held the cup and crutched at the same time. It felt more like crutching the coffee, and the body coming along, was a secondary thing.
While I was in the hospital, there was a fat, spoiled teenager in the next bed. He had broken his ankle. After surgery he was moaning lots.
When the nurse comes by every hour, to take blood pressure and temperature, she always asks if I have nausea, and what is the current level of pain I am feeling. They explained the pain scale to everyone in the ward. She came by and asked my pain level. I told her about a 3, so hold my pills. I may want them later.
The nurse asked the kid his pain level, and he whines it is a TEN. I told him don't say it is a ten, but tell the actual truth. He then whined louder "It is a TEN a TEN."
I told him they just cut my leg off, and the pain never got above a 7.
But he insisted the pain level was a ten, so the nurse presses the button and Doctors zoom in and drug him unconscious.
Pain is a subjective thing. Some people suffer some pains better than others. A person may be able to handle steady, constant pain, but sharp, stabbing pain bothers them much more, or visa versa.
Unfortunately I am a bit of a pain expert. I wish I was ignorant of pain like that teenager was. I suffered migraines for many years, I suffered lower back pain for many years, and now I have cancer and they chopped off my leg.
There is a pain scale, that attempts to quantify pain into usable values. Different Doctors have different pain scales, and different types of pain, affect different people, differently.
Basically a 0 pain level is no pain or discomfort.
1-2-3 - are more of discomforts, than actual pains.
4-5-6 - are real pains, that significantly affect your daily activities, and your quality of life.
7-8-9-10 - these are severe and disabling. No daily routines or actions are possible.
I have arthritis in my one hand. It is a constant discomfort. I can still do anything with that hand, but I am conscious that it is unpleasant to do that action. I call that pain a 2, and sometimes a 3.
When I stub a toe, it is like a 5 for a few seconds, then quickly drops to a 2 or 3.
A bee sting is a like a 4 that soon drops to a 2 or 3.
The sciatica from my back was often a 5 or 6. It would make me think of little else than the pain. No coffee, no lunch, and normal daily tasks are impossible.
After the leg amputation, the pain was a 7, but drugs took it down to a 3. I never suffered much from pain after the amputation. The Doctor that did the surgery said he believes that pain is a strong negative to quick recovery. He never wanted me to feel more than a 3. This phantom pain becomes a 4 or 5, and when Maddie talks to me my mind quickly drifts to the pain.
The worse were the migraines. When ever a migraine snuck up, and got out of control, it was a real 7 or 8. There was no other thought on earth but the stupor of pain. It was my entire world.
I had one migraine that was a 9 or 10. It was life threatening. Suicide was a pleasant relief that I was unable to perform due to the pain.
Some pills like Celebrex are wonderful additions to my life. I take 2 a day, and they seem to lower my whole pain down 1 or maybe 2 points, but only if the original pain is below a 4.
I have been taking way to much Tramacet lately. Tramacet lowers steady pains down a few points as long as the pain is steady, and below a 6 to start with.
When I get a sharp phantom pain, the Tramacet seems to do little. But it is very hard to tell what it would have been with a different dosage.
Ok, now back to the real world.
Maddie is back from Church with food shopping. She showed what she bought, and all of a sudden I am hungry.
I put the carpet sliders on our 2 living room chairs, so they slide easier on the tiles.
--
Evening -
Maddie is busy making supper. She just swept the driveway. I am a real slave driver.
We just went for a walk. About 50 meters to the gate and back, twice.
I lengthened the crutches, and they are more comfortable, but now they sometimes catch on the ground when bringing them forward. Whether I leave them this long will depend on whether I trip tomorrow or not. :-)
Tomorrow morning at 11:00 is an appointment with the Wound Care Lady so she can inspect and re-wrap the stump. I am going to nag her about a prosthesis. But I am sure they will want another 2 weeks for the wound to heal.
I am still having bad phantom pain. It is a steady pain level 3 with a jump up to 5 every minute or so. It is very distracting to have a strong pain every few minutes. I spend much time anticipating the pain.
My pain killing tablets seem to reduce the steady pain to about a 1, but they have little affect on the strong sharp pains. My sleep comes in many short naps.
I did a total of 30 minutes of "mirroring" today. If it helps, it will be a slow solution.
Maddie just served supper. I challenge anyone to find a healthier supper :-)
Yummy.
--
Maddie wanted to go to Church this morning, so she was busy with the typical woman fluffing hair routine. She did look nice though.
While she was busy getting ready, I made myself a cup of coffee for the first time in weeks. The biggest problem was moving the full cup to the computer. During this comedy skit, I dropped a crutch. What a mission. I finally ended up smacking the fallen crutch with the other crutch till it got jammed on a cupboard, and I was able to get it up to my hip and grab it.
I was unable to move the coffee cup without spilling, so I found a travel mug that has a lid. I decanted the coffee into it, then sort of held the cup and crutched at the same time. It felt more like crutching the coffee, and the body coming along, was a secondary thing.
While I was in the hospital, there was a fat, spoiled teenager in the next bed. He had broken his ankle. After surgery he was moaning lots.
When the nurse comes by every hour, to take blood pressure and temperature, she always asks if I have nausea, and what is the current level of pain I am feeling. They explained the pain scale to everyone in the ward. She came by and asked my pain level. I told her about a 3, so hold my pills. I may want them later.
The nurse asked the kid his pain level, and he whines it is a TEN. I told him don't say it is a ten, but tell the actual truth. He then whined louder "It is a TEN a TEN."
I told him they just cut my leg off, and the pain never got above a 7.
But he insisted the pain level was a ten, so the nurse presses the button and Doctors zoom in and drug him unconscious.
Pain is a subjective thing. Some people suffer some pains better than others. A person may be able to handle steady, constant pain, but sharp, stabbing pain bothers them much more, or visa versa.
Unfortunately I am a bit of a pain expert. I wish I was ignorant of pain like that teenager was. I suffered migraines for many years, I suffered lower back pain for many years, and now I have cancer and they chopped off my leg.
There is a pain scale, that attempts to quantify pain into usable values. Different Doctors have different pain scales, and different types of pain, affect different people, differently.
Basically a 0 pain level is no pain or discomfort.
1-2-3 - are more of discomforts, than actual pains.
4-5-6 - are real pains, that significantly affect your daily activities, and your quality of life.
7-8-9-10 - these are severe and disabling. No daily routines or actions are possible.
I have arthritis in my one hand. It is a constant discomfort. I can still do anything with that hand, but I am conscious that it is unpleasant to do that action. I call that pain a 2, and sometimes a 3.
When I stub a toe, it is like a 5 for a few seconds, then quickly drops to a 2 or 3.
A bee sting is a like a 4 that soon drops to a 2 or 3.
The sciatica from my back was often a 5 or 6. It would make me think of little else than the pain. No coffee, no lunch, and normal daily tasks are impossible.
After the leg amputation, the pain was a 7, but drugs took it down to a 3. I never suffered much from pain after the amputation. The Doctor that did the surgery said he believes that pain is a strong negative to quick recovery. He never wanted me to feel more than a 3. This phantom pain becomes a 4 or 5, and when Maddie talks to me my mind quickly drifts to the pain.
The worse were the migraines. When ever a migraine snuck up, and got out of control, it was a real 7 or 8. There was no other thought on earth but the stupor of pain. It was my entire world.
I had one migraine that was a 9 or 10. It was life threatening. Suicide was a pleasant relief that I was unable to perform due to the pain.
Some pills like Celebrex are wonderful additions to my life. I take 2 a day, and they seem to lower my whole pain down 1 or maybe 2 points, but only if the original pain is below a 4.
I have been taking way to much Tramacet lately. Tramacet lowers steady pains down a few points as long as the pain is steady, and below a 6 to start with.
When I get a sharp phantom pain, the Tramacet seems to do little. But it is very hard to tell what it would have been with a different dosage.
Ok, now back to the real world.
Maddie is back from Church with food shopping. She showed what she bought, and all of a sudden I am hungry.
I put the carpet sliders on our 2 living room chairs, so they slide easier on the tiles.
--
Evening -
Maddie is busy making supper. She just swept the driveway. I am a real slave driver.
We just went for a walk. About 50 meters to the gate and back, twice.
I lengthened the crutches, and they are more comfortable, but now they sometimes catch on the ground when bringing them forward. Whether I leave them this long will depend on whether I trip tomorrow or not. :-)
Tomorrow morning at 11:00 is an appointment with the Wound Care Lady so she can inspect and re-wrap the stump. I am going to nag her about a prosthesis. But I am sure they will want another 2 weeks for the wound to heal.
I am still having bad phantom pain. It is a steady pain level 3 with a jump up to 5 every minute or so. It is very distracting to have a strong pain every few minutes. I spend much time anticipating the pain.
My pain killing tablets seem to reduce the steady pain to about a 1, but they have little affect on the strong sharp pains. My sleep comes in many short naps.
I did a total of 30 minutes of "mirroring" today. If it helps, it will be a slow solution.
Maddie just served supper. I challenge anyone to find a healthier supper :-)
Yummy.
--
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