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.

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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.
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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
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16:44
A scooter just drove up with my medicine.
When the system works, it is fantastic.
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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).
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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.
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Day 112 - Wheelchair shopping

It was a pretty normal night. In bed at 23:00 and finally asleep at 01:00, and up at 08:00.
Maddie has a hair appointment, and there is a nice coffee shop that I like, next to the hair place.

I drove us there, and I sat, drank coffee, and read, till Maddie finished next door.
When I arrived at the coffee shop, the manager was giving a talk to the staff. He was a large Afrikaner about 30 years old. He looked very like a rugby player on steroids. The way he was talking to the staff was like from the apartheid era. Not with the words he used, but with the tone of the words. The government can legislate the words you can say, but how do you legislate voice tone?
As I finally got to the top of the steps, one young waiter came over and started moving a table and chairs away to give more room for me with my crutches. The boss man yelled at him saying " Hey!. If you want to keep working here, you better listen to me when I am talking to you."
The boss man never even looked at me. I gave the waiter a good tip.


It is funny, but most of the times I get a good feeling about the future of this country, is from encounters with young black people. Not from agood work ethics, or a good education, but from a "good manners" point of view. They seem to have a built in respect for an old, crippled, man. It must be a cultural thing.

I then drove us to a wheelchair store. It was a large store and just wheelchairs. The manager showed us the 4 chairs that seemed to fit my needs best. One had too few features, one was just right, and one had too many bells and whistles. Then she showed a very nice $$$ one.
The best folding wheelchair was R80,000 ($6,000). That is more than I paid for the car. The one I liked best was still expensive at about R10,000 ($725).

There are many things about this chair that I like. The front caster wheels are large, and as a free option, can be fat  carpet friendly wheels. The main tires can be either solid rubber (no flats), or pneumatic bicycle tires. The air filled tires are lighter, and they allow varying the tire pressure depending on terrain.
The main wheels come off very easily to make it easier to load and unload in the car.
From my hip to the end of my stump is 53cm. (21in.) All the chairs we have looked at have a set base depth of 40cm (15in). That means my stump hangs over the edge, and hurts after only a few minutes. The cheap, old chair we are borrowing, also has a 40cm base, so I have to put a large book under the stump, and a towel on top. The chair I like, can come with a 53cm long seat base for an extra R500 ($40).
The armrests height is not adjustable, but they do fold back out of the way so you can fit under a table, like to eat, or compute. The length of armrests is important because I use them to help get up out of the chair. Some armrests are only about half length, and don't help at all.
This chair comes with little wheels that stick out the back to prevent falling backwards. They adjust many ways to stop tipping right where you want it to.

I am wondering if me going to George with Maddie is a good idea. I would like to see where she lives, but that money would probably be better spent on a better wheel chair.

Lots to think about.
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Day 111 - Toxal and money

13:00
I battled to fall asleep with the phantom pain, but when I finally did, I slept for 11 hours.
One good thing about phantom pain, is that I concentrate on it and don't see the angiosarcoma elephant in the room.
 
I have been reading about Taxol. That is the main ingredient in Paclitaxel, the anti cancer drug I get in my chemo treatment.

Throughout history the Yew tree has been used for many purposes. The wood was used by English archers to make the long bow, and it was used to make barrels. It was also used as a poison, hence the name Taxol (Latin for Toxic). The Latin name for the Pacific Yew tree is "Taxus brevifolia".

In the 1960's, the bark was stripped off the Pacific Yew tree, and the poison taken out. Stripping the bark kills the tree. It took about 2000 mature trees to make 1kg of Paclitaxel. In 1990 they found that Taxol was also in the needles of the English Yew tree. It was in higher concentrations, and the tree was not killed harvesting the needles.

They have since been able to produce Taxol synthetically in the laboratory,
but it is still cheaper to use the needles from the English Yew tree. This is how the main supplier of Taxel, Bristol-Myers, does it. There was some controversy about patenting something that is found in nature. But then most of our drugs today are from plants. Aspirin, morphine, quinine, cocaine, and many many others. That is one reason to protect the environment.
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22:00
I just fell off my wheelchair. It gave me such a fright. I wasn't playing around at all. I was just moving forward near the big chair. One of the front caster wheels met the chair at an angle, and the rubber tire rode up the front of the chair on an incline, and tipped the chair backwards. I was lucky because as the front of the chair lifted, the front caster wheel got stuck under the chair cushion, and slowed the fall into slow motion.
I would never have believed such a thing could happen, but it did.

I fear that I will soon need to get some money from somewhere. I am in debt to my friend, and Maddie. I do not do "debt" very well.
I need a wheel chair, and I need plane tickets to George and back. I dread to think what the tickets to the US will cost early next year.
I need to get into the mode of spending all my wealth in the next few years, and not try to plan for living another 20 years. I think that 5 years is max, so I better start spending quick.
It is a very difficult thing for me. I am a cheap, frugal person. and spending money on a wheel chair when I have crutches is silly to me. But it would make my life MUCH easier.
Spending all my money in the next few years, then living another 20 years would be a soul destroying event. Having planed so careful all my life, then have everything turn out so wrong....I guess that is why they call events like angiosarcoma, "Black Swans".
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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.

 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.

I don't think it is designed for longevity, But then, neither am I.

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.
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