Elvis is Back in the Blog

Well, had a bad round with MS over the winter break .. but feeling better .. so look for more post on the great EiMB network soon .. like tomorrow .. really.

Tysabri Day

It's Tysabri day .. Once a month, I have to sit in a hospital version of a La-Z-Boy recliner and watch a thick, yellow liquid pumped into my veins for an hour, then wait another hour as the nurses make sure I don't die from the drug. Of course, I'm being a bit dramatic; it's not nearly as bad as I make it out to be. Actually, the nurses here at Sunrise are very nice and the side effects are (so far) pretty mild.

Hopefully this medication makes my MS bearable through the summer.The worst part are all the unbearable noises from the other patients - gurgling coughs, sneezes, burps and loud snoring. Not to mention the cell phone conversations as some dude thinks the infusion center is his own personal office away from the office.

Had a conversation with SageMax yesterday. It was almost surreal. I recorded the whole thing and I think I'll put it up on YouTube as soon as I edit out all the on-hold music. Quite frankly though, I like to see if SageMax does the right thing and just refunds the money as offered in their contract. If they do the right thing, I'm just going to drop the whole matter and forget that SageMax or B&H exist.

So, I think I will work on my story for a bit - already have around 20k and then maybe I'll throw an orange at this guy snoring loudly in the other chair.

*** UPDATE - nothing like catching a cancer patient, still hooked up to their chemo smoking in the men's restroom. Really, you can't wait a couple of hours before lighting up a ciggie? And to think these people are allowed to vote.

Tysabri: In for a Penny - In for a Pound

Tysabri Away!

Today is my first infusion of a new MS medication called Tysabri. It's kind of dangerous because you can die from a brain virus while you are on it. I'm told the odds are very low like one in a thousand, but to a guy who makes slot machines - dem are scary odds - especially considering I hit two royal flushes in one month. 

The infusion center is a basically a large room with a whole bunch of recliner chairs. An old Korean bomber pilot is sitting next to me telling a story how he fell asleep flying a plane from Phoenix to New York. He was awaken by one of the crew somewhere - lost over the Atlantic. They finally were able to get in touch with an air control tower but they could not find the plane on radar. Finally, he had to make a guess and turned west. They landed safely with the engines sputtering from lack of fuel.

I'm the youngest one here. Most are in their 70's and 80's getting cancer treatments. There's the typical variation - one friendly, cordial old guy (the bomber pilot), one grumpy old guy (arguing with the IRS) and one old guy sleeping and snoring loudly.

I have about another hour or so here. The worst part is the boredom. I'm glad I brought the netbook; at least I can get something productive done.

I hate when people have to do that loud, annoying yawn - completely opened mouth. It's the grumpy old man. Now the guy is talking loudly on the phone - about how his drivers are screwing him out of money. Why do you have to do your business here at the center?

This guy won't get off phone. He talks more than a teenage girl waiting in line to see Justin Bieber. Now he's called someone and describing how he read the newspaper. Describing all the things he found in the newspaper. I would have preferred the bomber pilot.

He's called his daughter. He's asking her if the baby's father is still around. Now he wants to take the father to court to get more money for his daughter. The grumpy old man is going make sure the missing father pays twice a week.


This guys is practically on the other side of the room and is talking so loud I can hear him clearly and so can everyone else. We are all giving each other that look like - get a load of this guy. And he doesn't even have MS just some of the markers for MS - they're loading him up on steroids. Maybe that's the problem? Steroid can kind of freak you out - especially if it's your first time.

Now the man has called a friend and is asking the friend if he will be a reference for man's son, who has just got out of prison and is in a half-way house. He's telling the friend that his son has repented of his dastardly ways and is now off drugs and working out.

I guess we all live lives of quiet desperation.

Finally, my infusion is over and I can step out of this room ... thank you for spending my infusion with me .. see you on the other end.

Close to 10k

I've had the goal of reaching 10k visitors and soon that goal will be accomplished. I've been thinking about expanding this blog by encapsulating it into WordPress. This would give me the opportunity to create individual pages and themes; as well as offer other types of gadgets and features.

I've used WordPress before and I'm familiar with CSS and HTML; so I don't think it's beyond my abilities. However, the site right now is manageable and easy to update every day. My MS has gotten worse and so I'm not able to do as much.

All of this means, I think I'll keep the original format for a while and set a new goal of 50k. Maybe then I'll change up the formatting.

Thank you - all of my loyal subjects.

Ps. I've added Google AdSense and Amazon advertising. I have no hopes of making any money from this (although I appreciate any clicks I can get). This was done more for additional tracking stats than anything else. This site is still and probably always will be self-funded.

Weed Card

As I've written before I have MS and can qualify for medical marijuana in Nevada. And no, I do not have a "weed card" - for three reasons:

1. It's still a federal crime and the DEA will bust you even though you have a state-approved license.
2. There are no good medical studies yet that prove any concrete benefits to using pot for MS.
3. In Nevada, you have grow and harvest your own marijuana and I just don't want to go through the hassle. Also I have a child and I don't want to expose her to the whole process.

Don't get me wrong - there's nothing inherently evil in pot. It's a drug and like all other drugs (including alcohol and tobacco) it can be abused. And like all other drugs it is a toxin. But the toxic and behavioral affects of pot, compared to legal drugs like caffeine, tobacco and alcohol are far less.

Such is the bizzzaro-world of American drug enforcement. By the way, I don't drink or smoke either.

All of that above to show this very funny video I found on G4 sung by the girls Garfunkel & Oates.

A Big Pain

My loyal readers time to serious it up for a bit and talk about pain. I have MS (Multiple Sclerosis) which means that the myelin sheaths around the neurons in my brain are deteriorating and my brain and spine short circuit.

Sometimes this results in strange experiences - like everything smelling like cheese for a week or the spectral creatures that appear at the side of my vision see "Little Gods of Vegas". But the most common and consistent symptom is pain. Specifically my right leg feels like it is on fire. It is a burning, buzzing electrical sensation.

The really strange thing is that the pain does not originate in my leg at all, but in my spine and brain. You could cut my leg off (please don't) and I would have the exact same pain. There are other strange affects like hot water feels cold and cold water feels hot. I get these things I call "oil squirts" which  feels like globs of hot oil are traveling up and down my leg.

Pain is addicting to the brain. The longer the body has pain the more the brain expects to have pain. It's like the pathways of pain to the brain are reinforced and solidified. Also the brain tends to start spreading the pain out from the origin. I notice that my pain has slowly crept up my back.

Pain medication has no affect on this kind of pain and I think sometimes can make it worse. Pain medication for the most part just makes it so you don't care about the pain, more than relieving it

An article in Science Daily seems to back up this theory.  "Placebo Effect Works Both Ways: Beliefs About Pain Levels Appear to Override Effects of Potent Pain-Relieving Drug" states the following:

The study of the placebo effect -- and its opposite the nocebo effect -- is published in Science Translational Medicine. The findings suggest that doctors may need to consider dealing with patients' beliefs about the effectiveness of any treatment, as well as determining which drug might be the best for that patient. - Science Daily, February 26, 2011

 I am such a huge believer in the power of cognitive control of pain. It is just as important to train your brain on how to desensitize itself to the pain signal and to reroute the generalization of the pain area. Pain treatment must not only focus on the physical aspects but must also include the mental - psychological processes.

This showed the volunteers really did experience different levels of pain when their expectations were changed, although the administration of pain relief remained constant - Science Daily, February 26, 2011

My dear, loyal readers - all twelve of you - if you're experiencing chronic pain, it is so important to work on cognitive and behavioral treatment. I humbly suggest CBT (cognitive behavioral therapy). CBT isn't some BS, lay on a couch and talk about your mother. CBT is about cognitively being aware of yourself and taking responsibility for your thoughts, feelings and actions. It about letting go of the past and not worrying about the future and just living in the moment.

I've found that my pain decreases when I release the expectation of having pain and stop worrying about what pain I will have in the future.

Okay, enough of the serious stuff .. next time it's all fun - I promise.

Read Science Daily article
Read NACBT article

The Raven hanging out ...

I received a few emails requesting a picture of the raven. I did a quick drawing of the raven I see at the corner of my eye from time to time. Once again this only an illusion created by whatever optical damage I have in my right eye. But it can be entertaining from time to time. Especially late at night.

Crow on my eye

Little Gods of Vegas

Before I was diagnosed with MS (Multiple Sclerosis) I used to see ghosts. In the corner of my vision, shadow figures of men and animals - darting from the closet to the door or the from bottom of the window flowing down the wall and under the bed.

Man with Hat

The most common was the shape of a large man with meatloaf shoulders and a square hat. He would sit behind me to my right wavering in out an out.

Of course when I turned to gaze upon the creature it would vanish. So illusive these spirit beings are.

Then there were the elementals - flashes of light, orbs streaming across the ceiling, black spots - holes in the universe.

And the noises .. knocking and pinging and ringing.

For a long time I ignored that there was something really wrong with my brain. I was scared it was cancer .. I don't fear dying, but I do fear suffering.

My brain still short circuits from time to time. Like a computer with a loose wire or two. Little glitches .. here and there. My old friend with the hat and the ragged woman who perches in the corner .. The black bird by the window arrive in  my back-stepping vision now and then.

I take photographs .. because things still catch in my brain like a leaf stuck on the side of the gutter as the rainwater rushes past. I thought capturing it as a picture would help. It does sometimes.

Lately, I've noticed Little Gods along the side of the road .. in the deserted lots with old "For Sale" signs. Little Gods .. some taller than others .. mostly stacked stones but some with pieces of wood or plastic on top.

And not in just one spot, but for miles down the road. Little Gods here and there .. So I took some pictures of these immortal beings .. I don't know who stacks these stones or exactly why. I think they're guardians, either to keep the demons out or perhaps to keep the demons in.