21:45
I am in a very lackadaisical mood. I don't know why, and I can't blame drugs.
I am doing a good series of exercises for all stump muscles and range of movement of the stump. Trying to get the stump muscles and skin stretched so not to cause pressure on the sore spot.
My brother mentioned shoulder exercises to strengthen my shoulder so I could use the crutches better. I used some old weights laying around and did five sets of right shoulder exercises. Then I tried the left side. I couldn't even do one set. My left arm and shoulder are so weak. I was shocked.
At first I thought I must have had a small stroke, and didn't know it. Then I started noticing how many actions around the house use my right arm. The toilet grab bars use the right arm. The bed brace for getting in and out of bed is also right arm. I don't ever seem to use the left arm. Now I have added shoulder exercises to my daily routines.
I have been trying to "invent" a way of getting the silicone liner on without pain.
My latest invention is a string of round beads on a piece of wire. The two ends of the wire are held together with a rubber band. I put the liner against the stump end, then insert the beads against the inside of the liner. When I pull the liner, it rolls over the beads. It causes much less pain, but still not near zero pain.
Next I want to make a tube, of PVC that the liner is stretched over, and when the liner/tube is put over the stump, the tube takes all the strain, and the liner is then slid off the tube onto the stump.
So today I went shopping for a 185mm PVC pipe. All PVC pipes are 160mm or 200mm. One plumbing place gave me great deal in 1 meter of 160mm PVC pipe. I bought it, even though it is a bit to tight. The only 200mm pipe was sold in 4 meter lengths. R600. Shriek!
I got very tired crutching around. I was being very gentile on my shoulder, and that was hard work.
I went to a hamburger place for lunch, and just sat in the car. The hassle of crutching into the restaurant was not worth the getting to eat. I finally just drove away.
--
This is a story of my treatment for Angiosarcoma, and my thoughts concerning it. The Angiosarcoma resulted in the removal of my left leg above the knee, and the wearing of a prosthesis.
Wednesday, 24 August 2016
Wednesday, 17 August 2016
Aug 17 2016 - MRI results, and getting up from a fall
09:00
After my success in getting up from my wheelchair without using my hands, I decided it was time to learn to get up from the floor without using any aids.
I have been healing from an internal stump pain for the last 8 weeks. During this time I have been doing exercises to strengthen and stretch parts of my body that will assist my one leg lifestyle.
I have been able to get up after falling by using my cane reduced to it's shortest length, (about 18 inches) or by climbing up something or someone. A strong kitchen chair seems to be the best and most sturdy getting up aid. Lately with my sore shoulder, getting up with the cane is not possible.
I am hoping that much of my stump pain can be relieved if the muscles in the stump are stretched more, so to be not as tight. Being not as tight, means they should be less likely to strain or tear. So I have been on the floor doing lots stretches and flexibility exercises.
I do a set of basic stretches every morning, but I am now doing much more, and doing it twice a day. While I don't see or feel any immediate benefit from this extra stretching, I also don't think it can, in any way, be a bad thing.
Having a more stretched hamstring in my good leg, allows me to have the leg straighter when I am bent over at the waist.
I do my teeth brushing in a semi squat position. When I am done, the good leg thigh muscle is screaming and burning. While washing dishes I do the same. This now allows a one leg, deeper squat position than I have ever had.
The combination of these two exercises, means if I am on the floor, I can get up by my self. The secret is to get in the position like I am on starting blocks. The good foot behind with toes bent. Sort of like being on all fours, except there are only three, so I am on all threes.
Then I push my bum up in the air so my third point is now my foot, not the knee. Then I slowly walk my hands back toward the foot. Soon I can stand up. My balance is not so good, so it helps if there is something to grab, or fall onto.
--
11:30
I just talked to the surgeon. He looked at the MRI and the blood test results.
The blood test show no signs of gout.
The MRI is pretty conclusive.
Myositis Ossificans.
That is normally caused by a broken or damaged bone, and muscle injury. I think amputation qualifies as both.
There is excessive calcium present where the bone is healing. Some of this calcium can sneak into a damaged muscle, and start growing. It is slow to grow, sometimes 4 to 6 months. This bone growing inside the muscle causes pain in the muscle.
The "cure" is exercise, and drugs. I currently spend about an hour a day doing stretches and exercising the stump and core muscles. I can't see any increase in exercises helping much. I am close to overdoing it as it is.
There are drugs that help to break up the small bone growing in the muscle. Also stronger anti-inflammatory drugs. The doctor sent the prescription to my phone. He says the pharmacy will accept that, and issue the drugs. There "should" be noticeable results within 4 weeks. I'll go see him again in a month.
I still can't use the crutches because of my shoulder. I don't know how I will get these drugs.
--
12:30
I tried calling the pharmacy to get the email address, so I can email the prescription.
I could not even tell what language the person on the phone at the pharmacy was speaking. It sounded like Zulu, so she was probably spelling the email address in phonetic Zulu. I would have had better luck if she had been using Arabic, or Mandarin.
Three phone calls, stress, bullshit, hassle, and I am still no closer to getting my pills.
My life is now complex, for what used to be simple things. This sucks.
My buddy says he will come by and fetch the drugs from the pharmacy. But it would be a huge inconvenience for him. The pharmacy will deliver in 5 days, but only if I can send the prescription.
I called the pharmacy help line. After 5 minutes of listening to computer music, the computer told me to call back later. Grrr.
I called the pharmacy AGAIN, and asked to speak to an English speaker. This time I got someone that speaks English better than I do. She was very helpful and said they would deliver everything for free right after lunch.
Solved.......Maybe
--
16:44
A scooter just drove up with my medicine.
When the system works, it is fantastic.
--
After my success in getting up from my wheelchair without using my hands, I decided it was time to learn to get up from the floor without using any aids.
I have been healing from an internal stump pain for the last 8 weeks. During this time I have been doing exercises to strengthen and stretch parts of my body that will assist my one leg lifestyle.
I have been able to get up after falling by using my cane reduced to it's shortest length, (about 18 inches) or by climbing up something or someone. A strong kitchen chair seems to be the best and most sturdy getting up aid. Lately with my sore shoulder, getting up with the cane is not possible.
I am hoping that much of my stump pain can be relieved if the muscles in the stump are stretched more, so to be not as tight. Being not as tight, means they should be less likely to strain or tear. So I have been on the floor doing lots stretches and flexibility exercises.
I do a set of basic stretches every morning, but I am now doing much more, and doing it twice a day. While I don't see or feel any immediate benefit from this extra stretching, I also don't think it can, in any way, be a bad thing.
Having a more stretched hamstring in my good leg, allows me to have the leg straighter when I am bent over at the waist.
The combination of these two exercises, means if I am on the floor, I can get up by my self. The secret is to get in the position like I am on starting blocks. The good foot behind with toes bent. Sort of like being on all fours, except there are only three, so I am on all threes.
Then I push my bum up in the air so my third point is now my foot, not the knee. Then I slowly walk my hands back toward the foot. Soon I can stand up. My balance is not so good, so it helps if there is something to grab, or fall onto.
--
11:30
I just talked to the surgeon. He looked at the MRI and the blood test results.
The blood test show no signs of gout.
The MRI is pretty conclusive.
Myositis Ossificans.
That is normally caused by a broken or damaged bone, and muscle injury. I think amputation qualifies as both.
There is excessive calcium present where the bone is healing. Some of this calcium can sneak into a damaged muscle, and start growing. It is slow to grow, sometimes 4 to 6 months. This bone growing inside the muscle causes pain in the muscle.
The "cure" is exercise, and drugs. I currently spend about an hour a day doing stretches and exercising the stump and core muscles. I can't see any increase in exercises helping much. I am close to overdoing it as it is.
There are drugs that help to break up the small bone growing in the muscle. Also stronger anti-inflammatory drugs. The doctor sent the prescription to my phone. He says the pharmacy will accept that, and issue the drugs. There "should" be noticeable results within 4 weeks. I'll go see him again in a month.
I still can't use the crutches because of my shoulder. I don't know how I will get these drugs.
--
12:30
I tried calling the pharmacy to get the email address, so I can email the prescription.
I could not even tell what language the person on the phone at the pharmacy was speaking. It sounded like Zulu, so she was probably spelling the email address in phonetic Zulu. I would have had better luck if she had been using Arabic, or Mandarin.
Three phone calls, stress, bullshit, hassle, and I am still no closer to getting my pills.
My life is now complex, for what used to be simple things. This sucks.
My buddy says he will come by and fetch the drugs from the pharmacy. But it would be a huge inconvenience for him. The pharmacy will deliver in 5 days, but only if I can send the prescription.
I called the pharmacy help line. After 5 minutes of listening to computer music, the computer told me to call back later. Grrr.
I called the pharmacy AGAIN, and asked to speak to an English speaker. This time I got someone that speaks English better than I do. She was very helpful and said they would deliver everything for free right after lunch.
Solved.......Maybe
--
16:44
A scooter just drove up with my medicine.
When the system works, it is fantastic.
--
Monday, 15 August 2016
Aug 15 2016 - Doctor visits....Again, and an MRI
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.
--
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, 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.
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