10 Aug --
I'm just back from a lot of running around.
I crutched a lot today, and my left shoulder is complaining.
First to Bradley's. We chatted lots, and decided that anything we do now may be good for learning about making sockets, but not so good for getting me walking.
This stupid pain MUST stop first. I wore the liner all day yesterday, but after showering this morning, I could not get it back on because of the pain.
We talked about the Paralympics, and the latest prosthesis inventions and techniques. We think alike in a lot of ways. He says the problem isn't building a prosthesis for me, but building the best prosthesis possible within the constraints of pain and comfort.
Next I went to the Pharmacy to get some pantyhose. The nylon stockings I wear now start rolling down my stump, and then form a tourniquet. So I am thinking maybe pantyhose and cut out the crotch and the right leg, and leave only the stump and waist. That way it shouldn't roll down any.
When I got to the pharmacy, I didn't have a clue about pantyhose, so I found the most fashionable white lady there and asked her to help me chose pantyhose. The chosen lady was very nice and we chatted for about 10 minutes. She said I would be better off going to Woolworth's, and buying woman's tights. The closest thing at the pharmacy was pantyhose, but they are thin and wouldn't last long with me using them. They had some long underwear that might have worked, but too much $$.
Then to the Hospital for lunch at the cafe. I had a Feta and Spinach trammazine. Then I went to the surgeons office, and got an appointment for Monday. Since this stupid pain is not going away, I think he may have to go in and see what the problem is. I dread that something fierce.
Then 14:30 for the Oncologist lady. She says that the blood report showed phosphates, which the kidneys should remove. My kidneys took strain with the chemo and drugs.The normal limit is .75 to 1.2. Mine was 1.23. She said that she is glad that it is so low after chemo. Some of her patients after three months have 5 to 6 phosphate. She says that the phosphate level is high, but so much lower than she expected. Everything else was good. She poked all my lymph glands. No pain at all. She made an appointment for 8 November. X-rays and scans. Also another blood test.
Then to Woolworth's. I saw some customer ladies standing around chatting. Customer ladies are usually much more knowledgeable than the store staff, and friendlier to talk with. I asked them if they could help my select tights or pantyhose. They all suggested tights. Tights are supposed to last longer, and they don't fray as easily after cutting. They said to smear silicone or fingernail polish where I cut them, to stop fraying. I bought a pair of Ladies large black tights.
At home I just tried on the tights. I might not need to cut them. they are quite comfortable. Of course to pee is a big deal. I mainly wanted them to stop my compression stockings from rolling down.
My shoulder needs a rest. Crutching hurts it.
--
15 Aug --
Today was a visit to the surgeon. This pain in the stump has only got about 10% less in the 63 days since the stump pain happened. I have been without the prosthesis all that time. At this rate, I will be wheelchair bound my whole life.
He poked, twisted, and pushed all over my stump to identify where the sore areas were. He narrowed it down to the area between the stump end, and the bone end. Right where we knew it was. Nothing learned from that.
He said that because of the denseness of a stump, it is impossible to use less invasive surgery to work in there. He said it requires a major opening, similar to the original surgery. He wants to avoid that at all costs. So do I.
Without something definite to fix, he would be wasting time cutting. The only thing that indicates something is wrong, is me saying I have pain. We have done x-rays, sonograms, and we have the results of the old PET scan and an old CT scan. There seems to be no physical reason for the pain.
He prescribed another blood test. This one for gout. Gout sometimes forms in stump ends.
He also told me to get an MRI of the stump.
I crutched to the MRI place to book an appointment. The ladies there were very nice. They said they are booked so solid it would be weeks till they could squeeze me in. Unless I did it tonight. There is a doctor that examines the MRI as it is done. He approves the MRI, or orders it redone. The MRI place is getting a new MRI Doctor. He and the old doctor will be there training tonight.
I said yes, I will wait almost 3 hours till their day is done. Meanwhile, I went and did the blood test. My shoulder was limiting my mobility on the crutches.
I started the MRI at about 17:30 and I was in that stupid machine for over an hour. Near the end, the Doctor said to the nurse to now include my spine, in case the pain is a spine related pain like sciatica. Good thinking that.
After that was done, the doctor ordered a shot. That shot hurt, and then back in the machine. The shot was to emphasize any cancer tumors that may be growing in the stump between the bone and the stump end.
I hadn't thought of that. Scary stuff.
At the end I asked if they saw any tumors. They said they are not allowed to talk about the MRI results ever, so don't even ask. They asked the name of my oncologist, so they could send her the results in addition to the surgeon.
I'll call first thing in the morning to find out all the results from the Oncologist and the surgeon.
When I tried to leave the hospital, my shoulder was really bad. I didn't think I could crutch out to the car. Along came a porter pushing a wheelchair. I asked if he would give me a ride to the car, he said sure get in.
At home I battled to get from the car to the front door.
Pushing the wheel chair is even hard on my shoulder.
I have ordered online food shopping. The food should be delivered tomorrow at 14:00. Good thing I did that, I could not go shopping with this shoulder.
It looks like another few days of wheelchair, and playing computer games.
--
Monday, 15 August 2016
Monday, 8 August 2016
August 8 2016 - The Paralympics: Inspiration for all amputees.
The Paralympics are a wonderful test ground for new prosthetic developments.
Prosthetics are getting good enough to challenge able bodied people at most sports, and better than able bodied people at some sports. (If a person can wear a socket without stump pain.)
Many traditional sports (skiing, archery) use mechanical devices. This man/machine combination is better than man alone. How about a prosthetic arm and hand for archery, or rifle shooting. No unsteadiness, no shaking, no heartbeat, and no fatigue.
The rules in the Paralympics say a high jumper must leave the ground with a "foot". You cannot leave the ground with a prosthesis. That event is called pole vaulting.
Most of the single leg, high jumpers, hop up to the bar and do a forward somersault over the bar.
If the residual stump is long enough, then some will use a prosthetic leg and run up to the bar like a normal high jumper. But then they must carry the dead weight of the prosthesis over the bar with them.
I tried to get better at hopping. Hopping makes my stump hurt. Maybe from the bouncing of the blood in the stump.
In the Paralympics, they have a classification for "Single leg amputee above the knee". T42/ F42.
The T stands for track, and F stands for field.
Some of the other classifications are:
11–13 – Visual impairment. Compete with a sighted guide.
20 – Intellectual disability
31–38 – Cerebral palsy
41–46 – Amputation, and others (including athletes with dwarfism)
51–58 – Wheelchair
The ones that are most relevant to me are:
T42 - single and double above knee
T43 - double below knee
T44 - single below knee amputation
T45 - double arm amputation
T46 - single above elbow amputation
The times for T43 (double below knee) running events are less than the times for T44 (single below knee) events. The symmetry of having both legs amputated gives a distinct advantage over the single leg amputee. Recently this has been evident in the T42 (above knee) class as well. There is no separate class for double above knee amputations, so single, and double above knee amputees run in the same class.
The Gold Medal at the 2012 Paralympics in the 400 Meter T42 run, was won by a double above knee amputee. This guy ran with no knees in the prosthesis. That makes for a funny looking run, but the weight savings means he has a very quick leg swing.
It also means that if you are a serious, single legged T42 runner, you should have your other leg amputated in order to remain competitive.
Creating a fair Paralympic classification system, is almost an impossible task. The simple extension of the length of the leg shaft between the knee and ankle can give a distinct and unfair advantage to a runner. How do you accurately determine how tall a person would have been, if he had been born with legs instead of without legs?
Oscar Pistorious was born with deformed lower legs that were amputated when he was a child. He runs with carbon fiber feet in the T43 (double below knee) class.
Prosthesis keep getting better and better. Soon the "disabled" person will be the healthy, whole person.
Sunday, 31 July 2016
July 31 2016 - Sitting and standing
Not much to blog about.
I have been letting my stump heal as much as possible. Yesterday I put the silicone liner on my stump. It took a long time, and any time I forced it on, it hurt.
Today I am pain free, and when the phantom pain acts up, it is more of "phantom uncomfortable" than "phantom pain". It did wake me up a few times last night, but there was no real pain.
I have been practicing standing up from the wheel chair.
Anytime I try to get up from being down, it is more about balance than strength. I tell my friends thats if I fall, to never try to help me up. Just protect me from any damage, and keep others from "helping" me up. Balancing as I get up is hard, and if someone pulls or touches me, then my balance is thrown off. It is best for them to stand strong, and let me "climb" up them.
Getting up from a chair, or wheel chair, is difficult without hanging on to something to help keep my balance. With my foot in front of the chair, my center of gravity is far to the rear of my foot, and so I can't get my weight forward enough to be able to stand unless I pull forward on something. That is why I have grab bars bolted onto the walls in the bathroom.
With the pain being less in my stump, it means I can push down and rearward on the chair seat hard with the stump while getting up. This means I do not need a grab bar to pull forward. Creating pressure with the stump, also makes me much more stable while getting up and down.
So today I have been practicing getting up and down from the wheel chair without gripping anything. It takes a lot of stump pressure, and good balance. This will make my life easier, as I can get up from the wheelchair with something in my hands, like taking dishes to the sink.
Next I want to work on getting up from the floor, without using the cane.
My solar system is working well. I just did the math on all the log files from my power monitor. My total electricity usage averages out to be 34.7 KWH/ day for the last 3 months. At R1.65 a KWH, thats R171.90 a month. (or $11.85 a month).
--
I have been letting my stump heal as much as possible. Yesterday I put the silicone liner on my stump. It took a long time, and any time I forced it on, it hurt.
Today I am pain free, and when the phantom pain acts up, it is more of "phantom uncomfortable" than "phantom pain". It did wake me up a few times last night, but there was no real pain.
I have been practicing standing up from the wheel chair.
Anytime I try to get up from being down, it is more about balance than strength. I tell my friends thats if I fall, to never try to help me up. Just protect me from any damage, and keep others from "helping" me up. Balancing as I get up is hard, and if someone pulls or touches me, then my balance is thrown off. It is best for them to stand strong, and let me "climb" up them.
Getting up from a chair, or wheel chair, is difficult without hanging on to something to help keep my balance. With my foot in front of the chair, my center of gravity is far to the rear of my foot, and so I can't get my weight forward enough to be able to stand unless I pull forward on something. That is why I have grab bars bolted onto the walls in the bathroom.
With the pain being less in my stump, it means I can push down and rearward on the chair seat hard with the stump while getting up. This means I do not need a grab bar to pull forward. Creating pressure with the stump, also makes me much more stable while getting up and down.
So today I have been practicing getting up and down from the wheel chair without gripping anything. It takes a lot of stump pressure, and good balance. This will make my life easier, as I can get up from the wheelchair with something in my hands, like taking dishes to the sink.
Next I want to work on getting up from the floor, without using the cane.
My solar system is working well. I just did the math on all the log files from my power monitor. My total electricity usage averages out to be 34.7 KWH/ day for the last 3 months. At R1.65 a KWH, thats R171.90 a month. (or $11.85 a month).
--
Tuesday, 26 July 2016
July 26 2016 - Back in Pretoria
16:00
It has been a cold and rainy day. High was 12C (53F). It is currently hailing.
I am SOOO much a hot and dry kind of guy!
After my latest fall and the resulting hurt back, I have been using way to many drugs. While sitting in the wheel chair in George, feeling sorry for myself, and wanting to take pills for my back,...and pills for my stump,...and pills for my PLP, it is very easy to just take lots of pills, and let the body sort out what it needs.
I have been thinking a lot about how some guys on the internet are playing with open source hardware prosthesis. They are not trying to make a leg or arm replacement, they are trying to do better than that.
One guy has BBK (Bilateral Below Knee) amputations. That is both legs amputated below the knee. He is a semi-pro rock climber. His prosthesis have multiple shapes on the prosthetic foot for jamming in crevices, and standing on tiny ledges. He also made both legs much longer so he can reach far away stepping points. He now has climbed some routes that are humanly impossible.
On the TV show Bionic Builders they have a lower leg prosthesis that has a strong spring in the pylon to allow the user to dunk a basketball.
Maybe trying to mimic a knee is a small step. Why not do much more?
They have prosthetic hands with led lights in the fingertips, and sharp knives that come out of the fingers.
--
I had planned on driving back to Pretoria from George, but a friend had a son that wanted a ride from George to Pretoria on Monday, so I came back a day early, but then he could drive the whole way. I could take pills that may not be best while driving.
My "chauffeur" was an interesting guy. He gave me a good feeling about the world future. I have met so many young people that are useless, and a waste of air. (I consider anyone under 50 to be young.) Talking to a good person, that is also young, was a pleasure.
About a third of the way into the drive back, we ran into snow. Snow in the Karoo desert.
It has been a cold and rainy day. High was 12C (53F). It is currently hailing.
I am SOOO much a hot and dry kind of guy!
After my latest fall and the resulting hurt back, I have been using way to many drugs. While sitting in the wheel chair in George, feeling sorry for myself, and wanting to take pills for my back,...and pills for my stump,...and pills for my PLP, it is very easy to just take lots of pills, and let the body sort out what it needs.
I have been thinking a lot about how some guys on the internet are playing with open source hardware prosthesis. They are not trying to make a leg or arm replacement, they are trying to do better than that.
One guy has BBK (Bilateral Below Knee) amputations. That is both legs amputated below the knee. He is a semi-pro rock climber. His prosthesis have multiple shapes on the prosthetic foot for jamming in crevices, and standing on tiny ledges. He also made both legs much longer so he can reach far away stepping points. He now has climbed some routes that are humanly impossible.
On the TV show Bionic Builders they have a lower leg prosthesis that has a strong spring in the pylon to allow the user to dunk a basketball.
Maybe trying to mimic a knee is a small step. Why not do much more?
They have prosthetic hands with led lights in the fingertips, and sharp knives that come out of the fingers.
--
I had planned on driving back to Pretoria from George, but a friend had a son that wanted a ride from George to Pretoria on Monday, so I came back a day early, but then he could drive the whole way. I could take pills that may not be best while driving.
My "chauffeur" was an interesting guy. He gave me a good feeling about the world future. I have met so many young people that are useless, and a waste of air. (I consider anyone under 50 to be young.) Talking to a good person, that is also young, was a pleasure.
About a third of the way into the drive back, we ran into snow. Snow in the Karoo desert.
Fortunately I talked my chauffeur out of throwing a snowball at me. I held the Padkos (Road Food) that Maddie had made us for the trip, as hostage. Included in the Padkos was some excellent meatballs that he wouldn't want to give up.
The trip took about 4 hours less than when I drove it last. But then, I stopped to nap lots. My driver just drove straight through with only stops for fuel.
I miss Maddie. I'm sure she is busy getting ready for her trip to Ireland. I am not sure when we will be together again. Maybe in September. As usual, everything depends on the prosthesis guy, and the Oncologist. Not only do I feel I have little say in my future, but sometimes I feel that I am not even consulted.
One thing I do think about is whether I want to try to get the prosthesis working again. I am relatively pain free right now, and the risk of hurting the stump and increasing the PLP just doesn't seem like it is worth the price. Absence of pain is a wonderful thing. But walking with a prosthetic leg is also a good thing.
What do I do?
--
Sunday, 24 July 2016
July 24 2016 - Leaving George
Just some quick thoughts.
I still am having lots of back pain, but it is getting better. I'm also having stump pain, and PLP.
I have been doing the TENS on my stump and back before bed. It is so hard to tell if it helps or not.
Tomorrow morning I leave Maddie :-( and head back to Pretoria.
My back is a worry for me. Sitting in the car for 13 hours will not be easy.
A niece of Maddie, has her son visiting her here in George, and he has to be in Pretoria for work on Tuesday morning. He already bought a ticket for last week, but wanted to stay a few more days, so he will go up with me. He has offered to drive the whole way, so I will be able to drug up if needed.
I should be back in my home by 21:00 on Monday night.
Maddie gets to prepare for her 3 weeks in Ireland and get some precious "ME" time, with out having to babysit her crippled, druggy boyfriend :-) She will spend most of August in Ireland with her one daughter. I'm jealous of Ireland.
My next month should be boring. I need to try to get a prosthetic socket working on my sore stump. I also have an Oncologist appointment on the 10th of August.
I may have to throw money at the backyard of my Pretoria house to allow better wheelchair access.
I so miss my stateside friends.
--
I still am having lots of back pain, but it is getting better. I'm also having stump pain, and PLP.
I have been doing the TENS on my stump and back before bed. It is so hard to tell if it helps or not.
Tomorrow morning I leave Maddie :-( and head back to Pretoria.
My back is a worry for me. Sitting in the car for 13 hours will not be easy.
A niece of Maddie, has her son visiting her here in George, and he has to be in Pretoria for work on Tuesday morning. He already bought a ticket for last week, but wanted to stay a few more days, so he will go up with me. He has offered to drive the whole way, so I will be able to drug up if needed.
I should be back in my home by 21:00 on Monday night.
Maddie gets to prepare for her 3 weeks in Ireland and get some precious "ME" time, with out having to babysit her crippled, druggy boyfriend :-) She will spend most of August in Ireland with her one daughter. I'm jealous of Ireland.
My next month should be boring. I need to try to get a prosthetic socket working on my sore stump. I also have an Oncologist appointment on the 10th of August.
I may have to throw money at the backyard of my Pretoria house to allow better wheelchair access.
I so miss my stateside friends.
--
Tuesday, 19 July 2016
July 19 2016 - Comforted by an old pain.
05:00
I am sitting in the wheel chair, in the kitchen, eating a hot dog omelet.
My back was screaming for relief while in bed, so I decided to just get up, and drug up. Muscle relaxers, pain pills, and anti-inflamatories. Some of these pills eat my stomach, so food is important.
I don't like eating when I don't need nourishment. I don't want food to be entertainment. I don't want food to be ulcer prevention.
I have no stump pain, no phantom pain, just old, familiar, back pain.
Like being lost, in a strange place, then seeing someone you know, but don't really like, right next to you. Your not quite happy to see them, but some how comforted by their presence. The enemy you know.
I laid in bed and did the full set of back exercises and stretches. I haven't done them for a long time. My mind has been distracted with cancer and loosing a leg.
I'm not alone now. Millions and millions of people have back pain. I'm back in the flock.
--
06:50
OK I feel the pills doing their job. Maybe I can get an hour nap before Maddie wakes up.
--
Monday, 18 July 2016
July 18 2016 - Another fall, and another pain.
10:30
From a chilly George.
It is a beautiful, clear day out side.
Maddie is hanging laundry.
I am drugged up and stupid.
Yesterday I wanted to make coffee and help Maddie get ready for church. We set the alarm for 7, but at 6 I had to pee. So I decided to crutch to the toilet. The light switch is up on the wall, and with crutches is a pain in the ass, and I didn't want to wake Maddie, so I crutched in the dark.
I made it up the steps to the dressing room. While crutching to the bathroom I went to move the crutches forward to put weight on them before moving my good foot forward. But it was like the crutches never got to the ground. I felt like I was falling forward down steps, and the crutches were only hitting air.
Then the back of my head hit the closet doors, and I landed hard on my tailbone. Shock and back pain. I cried out and woke Maddie. I had been falling backwards while thinking I was falling forward.
The pain in my lower back was intense. I just laid there moaning. Thankfully Maddie did not try and move me. She did good. Laying on my back on the floor just happens to be the best thing for lower back pain, and I was in that position already. Maddie brought some blankets, and a pillow, and left me alone. About an hour later she wanted to get me back down the stairs to the bedroom, but first up into the wheelchair. She brought a strong kitchen chair, and I was able to crawl up it into the wheel chair, but sitting hurt my back to much, and I fell/crawled back onto the floor.
Maddie brought my pills, and quickly made an omelet, and I took pain, anti-inflamatories, and muscle relaxers. I ate the omelet laying on the dressing room floor.
I then dragged myself down the stairs, and again using the kitchen chair, was able to get into bed. It was late afternoon before I could move and sit up. I took my drug cocktail every 4 hours.
Today I am able to sit in the wheelchair, but I must sit still, and sit straight up.
I dread thinking about driving back to Pretoria in a weeks time.
Shame, Maddie wants to go to the Botanical gardens, and maybe a movie. I want to be safe in bed or the wheelchair. I read about some amputee veteran from Afganistan that had lots of falls on crutches and with his prosthetic leg. He says he has the choice of a semi normal life with his prosthesis, or a zero pain life by staying in his wheel chair. He chose the wheel chair, with occasional use of the prosthesis.
There is much advantage to a low pain, no falling lifestyle. My desire for a pain free existence is becoming more important than a traveling, socializing, or going out of the house.
I am becoming a hermit.
--
From a chilly George.
It is a beautiful, clear day out side.
Maddie is hanging laundry.
I am drugged up and stupid.
Yesterday I wanted to make coffee and help Maddie get ready for church. We set the alarm for 7, but at 6 I had to pee. So I decided to crutch to the toilet. The light switch is up on the wall, and with crutches is a pain in the ass, and I didn't want to wake Maddie, so I crutched in the dark.
I made it up the steps to the dressing room. While crutching to the bathroom I went to move the crutches forward to put weight on them before moving my good foot forward. But it was like the crutches never got to the ground. I felt like I was falling forward down steps, and the crutches were only hitting air.
Then the back of my head hit the closet doors, and I landed hard on my tailbone. Shock and back pain. I cried out and woke Maddie. I had been falling backwards while thinking I was falling forward.
The pain in my lower back was intense. I just laid there moaning. Thankfully Maddie did not try and move me. She did good. Laying on my back on the floor just happens to be the best thing for lower back pain, and I was in that position already. Maddie brought some blankets, and a pillow, and left me alone. About an hour later she wanted to get me back down the stairs to the bedroom, but first up into the wheelchair. She brought a strong kitchen chair, and I was able to crawl up it into the wheel chair, but sitting hurt my back to much, and I fell/crawled back onto the floor.
Maddie brought my pills, and quickly made an omelet, and I took pain, anti-inflamatories, and muscle relaxers. I ate the omelet laying on the dressing room floor.
I then dragged myself down the stairs, and again using the kitchen chair, was able to get into bed. It was late afternoon before I could move and sit up. I took my drug cocktail every 4 hours.
Today I am able to sit in the wheelchair, but I must sit still, and sit straight up.
I dread thinking about driving back to Pretoria in a weeks time.
Shame, Maddie wants to go to the Botanical gardens, and maybe a movie. I want to be safe in bed or the wheelchair. I read about some amputee veteran from Afganistan that had lots of falls on crutches and with his prosthetic leg. He says he has the choice of a semi normal life with his prosthesis, or a zero pain life by staying in his wheel chair. He chose the wheel chair, with occasional use of the prosthesis.
There is much advantage to a low pain, no falling lifestyle. My desire for a pain free existence is becoming more important than a traveling, socializing, or going out of the house.
I am becoming a hermit.
--
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