May 7 2016 - I used to like ants.

02:42
I went to bed at about midnight.  I wasn't sleepy.
At 02:00 I awoke covered in crawling ants. They were all over me. I started slapping them and trying to get them off. They seemed to cover my entire body. I turned on the light, and there were no ants. But I could feel them everywhere. I wheeled into the bathroom to use the mirror. There were no ants. But I could feel them crawling all over me.
Now I was wide awake, and my heart was pounding. I went into the kitchen and turned on all the lights and got a small mirror to re check.
 No ants.
I itched everywhere there was skin, and even places with no skin like my left leg. I sat calmly and tried to think the itching away. Nope, it was real.
I took a Tramacet, and popped out another in case I decided to take it later. I decide on a Robaxin also, because of the twitching and jerking. Now almost an hour later the itching is still there. Even my non existent left leg has the sensation of crawling ants.
But now I wonder if I need pain killers to deaden the nerves, or a Lyrica or Cymbalta . The itching is probably a withdrawal symptom from them.
This withdrawal symptom is because of drugs for PLP, from an amputation, because of cancer. So many facets of my life have changed because of Angiosarcoma.
I believe that people should be willing to accept the consequences of their actions. The consequence was cancer, but what was the precipitating action that launched the cancer? Always more questions than answers.

I just heard 2 gun shots. Sounded like a pistol. Not far away, but not to close either.
Hmm..Maybe a good time to clean my gun.
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04:15
My 9mm is now super cleaned and oiled. I am ashamed. It was so dirty and dry.

Now I don't know whether to try to sleep again, or just stay up. The Tramacet, Lyrica and Robaxin seemed to have calmed the itching. I fear the Lyrica did most of the cure.

I am to stupid now to work on my Arduino project. Yesterday I got the voice recognition unit to talk to the Arduino. Next is to change the voltage out of the Arduino to a voltage that my relay board can see.
 I dug through the shed yesterday, and found all the boards and boxes I had built, and used, about 13 years ago to make my house voice activated. I had a desktop computer that could recognize different voice commands, and an analog to digital board to control eight separate lights and fans in the house.
Here is a picture of my old project. (minus the computer)

And here is a picture of the current project.

I want to do the same "voice controlling the house" thing now, but with 13 years newer technology.
I will use the same relay board. The lower blue board is the Arduino, and the upper board is the voice recognition unit. The small blue board on the right (that I bought yesterday) is a voltage changing board to change the Arduino output voltage into what the relay board needs for input.
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05:02
So this blog is about ants, guns, electronics, smart houses, pain, drugs, amputations, and Angiosarcoma.

Maybe I need some hot Horliks. then I'll try to sleep.
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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.
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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."

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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.

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.
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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.
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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.

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