Archive for April, 2011

In Which I Survive Some Shit and Denise Hudson Writes Me Another Song

April 29th, 2011

Back story is required for this piece of awesomeness, which you are about to hear. If you are not new to these parts, then you are most likely familiar with this story. If you are new, as I realise more and more of you are, then sit down and allow me to tell you a story.

A month ago, I got really ill. Ill to the point where I required emergency medical care because I could not breathe and was combating four infections. Ill to the point where I became senile for nearly four days. Ill to the point where many held their breath, waiting to see if I would survive yet another battle with Lupus. It was also during this time, that I gave up profanity for 46 days, during a period known as Lent.

Normally when I’m going through Lupus bullshit, I make the most inappropriate and morbid jokes. So do those close to me. The above mentioned battle scared many to the point where nobody knew exactly what jokes would be okay and my partner refused to make any, which is highly abnormal. It was during that time that the awesome that is Jay Biggsy (@BiggsyJay) created the following image, in an attempt to make me laugh and succeeding brilliantly:

Now to go even further back, last year I gave up double entendre and sexual innuendo for Lent. Once Lent was over, the lovely Denise Hudson (@RangerDenni) wrote me a super awesome song, in order to help me celebrate. This year, she has done it again.

This song is a two-for. There are eight *bleeps* in the song, as I swore eight times during Lent. Considering I swear at least 10 times a day, I call that a success. The other part of the song helps me celebrate kicking Lupus’ ass, yet again. I may still be recovering but I’m kicking its ass nonetheless. She’s named this song Sinus Ninja Hates Your Face and I love it! It is extremely silly. She claims that it is rough. Rough or not, it is a very appreciated gesture and I adore it, especially for the silly factor. It will cause me to giglesnort for a very long time.

It isn’t every day that people write songs about you or for you because you’ve inspired them in some way. I’ve been so extremely blessed that people have written more than a handful of songs, with me as their inspiration. This is the third time I’ve been blessed with such a thing from Denise, alone. Four, if you count the “naked” version of of last year’s Lent song I am deeply touched and humbled.

You will find the song embedded below, with lyrics. If you are viewing this in an RSS reader, you’ll probably need to visit the site in order to listen to it.

SQUEE!

what’s that!? -in your nose?
is it snot?
f%^& i dunno [IT’S SNOT!!]
didn’t you deal with that d$5! before?
jump back! He’s back! Lookin’ for more
because…

[rousing chorus]
Sinus Ninja hates your face…
(get your booty back up on that wagon)
there’s no way you can escape
(give a kick to the head to the *shaggin’ bastard*…)
He comes stealthy in the night, you know..
so you have to kick his a## like a commando

Yes you are going to win the day
Sinus Ninja has no say
in your final destiny into an early grave!

You will insult his gluteus maximus
without uttering a nastiness.

AWWWWW… s#$5! I think you kicked him in the t!&!
Now he’s writhin’ on the floor, cuz you’re a
Lupus Warrior!
(cuz you a fiesty…..{horrible word of Xondorian origin which means “bad assed female})

CH
Sinus Ninja hates your face
There’s no way you can escape
kick him down into the depths of hell
Mutha F3%$kah what’s that smell?

Sinus Ninja hates your face
{repeat thill the a@@ho%e is dead. fade out}

In Which I Yell ‘SHUT THE FRONT DOOR!’ And My Brain Implodes

April 21st, 2011

Today started off uber awesome. I received a very exciting email that I cannot talk about. I had a very exciting meeting about the new radio station that I cannot talk about. Today has been awesome.

Just when I think things cannot get any better and I cannot contain my excitement any longer, while at the same time warding off an impending panic attack because things can become equally horrible within a second if it all fall apart, I noticed ‘it’. The thing which nearly caused me to break LENT but instead caused me to exclaim, “SHUT THE FRONT DOOR!” and make my brain implode.

I’m neurotic about my stats. I was checking them, as I do obsessively throughout the day. That is when I noticed a link referral to Geeky Pleasures from a site I have not seen link to me before. Being OCD about such things, I clicked on the referral link. This referral link was from an online entertainment magazine that I hadn’t heard of before. So, I did what any good OCD nerd would do. I decided to investigate this website. I searched it out on Alexa. My brain sputtered when I saw that it has a worldwide rank 384.

That is when I decided to look it up on the good old Wikipedia and read the following:

Zimbio.com, a San Carlos, California, USA-based company is an online magazine publisher. It was founded by Tony Mamone and Danny Khatib. Mamone is the CEO of the company, Khatib is its president, and John Newlin is the Editor-in-Chief.

Zimbio publishes a blend of professionally written featured stories, user contributed articles, videos and high resolution photography. The site commonly covers headlines in entertainment, style, current events, and more.

Zimbio has also launched “Zimbio TV” that features various videos from very popular TV series and syndicated shows.

According to Quantcast, Zimbio is ranked the 141 most visited US site on the Internet. In September 2010, it received around 21 million visits.[2] In February 2009, Zimbio was one of the fastest growing community sites on the internet.[3]

The company is venture-backed by Menlo Ventures and Draper Richards.

 

Want to know what article of mine they posted, added by CEO Tony Mamone? Click the clip below:

 

Tony, I don’t know how you found my site but thank you for linking to it. It makes my brain especially implode that you linked to one of my articles about the space shuttle program and William Shatner. For something like that to hit a high traffic, mainstream entertainment section of a website which receives over 8 million unique visitors a month, in the USA alone, is both wonderful and bizarre. Especially when stuff like this is not what I had planned for.

Sorry if this seems like I’m name dropping or something. But this is a major thing for me and I don’t know what to make of it. Things like this just don’t happen to small town girls from Canada and I am grateful and currently a wee bit overwhelmed by it all.

Now please excuse me while I faint.

How I Survive Lupus (AKA My 12 Step Programme)

April 7th, 2011

Earlier this week, I was asked by one of my twitter followers (@robtclements) how do I cope with my lupus and the things it does to me. I tried my best to answer him via Twitter, but that isn’t always the best medium. I thought it would be a good idea to write about it great detail. If you are a long time reader of my blog, this will not be new information. However, I realise there are a lot of new people to this part of my world and, in cases such as these, it isn’t a bad idea to repeat it; not only to serve as a reminder to others, but also myself.

There are a few things that I do to get through it:

  1. If something is bothering me on an emotion level (fear, doubt, anger, frustration, etc.), I name it. Naming it allows my brain to make it tangible. It allows me face it head on. I believe you can’t fight something that you cannot, or are unwilling to name.
  2. I do not internalise by feelings. I get them out in the open, either through telling one person or blogging. For me, this is very necessary step in moving onto my plan of action to win whatever battle I am facing. Also, internalising it is never a good idea. I use to do that, isolating myself in the process and causing depression to set in. Some times (read a lot of the time) this is scary because I face rejection and all of my abandonment issues rear its ugly head. However, despite my fear of rejection, I open up about them because:
  3. There is no shame in admitting to fear, anger, despair, grief, frustration, doubt, etc. Admitting to it, especially openly, take a huge amount of courage. It means you are willing to stand up face whatever it is, even if you are shaking in your trousers while doing so.
  4. I remind myself that raging openly about the fear, anger, despair, grief, frustration and doubt means that I am still alive and am fighting. The day I stop being angry, afraid, grieving, frustrated, doubtful means that I’ve given up and am probably extremely depressed.
  5. If I fall down, metaphorically and literally, I pick myself up and try again. I do this as many times as necessary, each time going through steps 1 -4.
  6. I try my best to focus on all the positive things that are currently going on (no matter how small or trivial it may seem) and, in the process, reminding myself why I am fighting. I remain thankful for all the wonderful things I get to do despite lupus trying to kick my butt. Sometimes this can be quite difficult as living with lupus can get pretty bleak. I also remind myself that people are fighting with me and doing their best to carry me when I cannot carry myself. I am not alone, either in this battle or in the way I am feeling.
  7. I breathe.
  8. I erect strict mental boundaries as I’m someone who needs a lot of space and room to contemplate. I am a cave dweller by nature. Sharing does not come easy to me. I can share once and only once. It is one of the reasons I blog, so that I don’t have to repeat the same story over and over. Doing so causes me to become even more angry and frustrated and I find it very emotionally and mentally fatiguing.
  9. I find humour in the silliest and most morbid of places and laugh, even if it is through tears.
  10. I remind myself that, even though I share a lot of qualities with Spock or Data, I am only human.
  11. I remind myself that sometimes you need to crawl before you can walk.
  12. I think most importantly, I deal with lupus like someone would deals with an addiction: day by day. Sometimes the day by day is very difficult because so much can be thrown at you in a 24 hour period. That is when I take it moment by moment. I remind myself, “You survived this moment. You can survive the next.” That does not mean that I am not crying or raging in the process.

For those of you who are new to this part of my world and want to learn more, I invite you to read and download this plus read this and listen to this.

And once again, I’d like to thank every one for all they’ve done to support me over the last little while. It is appreciate more than I could ever articulate.

Literally Losing My Brain

April 3rd, 2011

I’m going to preface this blog by letting you all know that I’m scared and worried right now. Today, I was slapped, yet again, with some Lupus reality. And now I fear I am going truly senile instead of just the normal lupus brain fog and cognitive issues which were compounded when I had my stroke.

I’m on antibiotics right now. I’m extremely careful when reading medication labels. Misreading medication labels is a huge cause of a word that is escaping me at the moment. Even medications I’ve been taking for nearly a decade now, I read the label each and every time I take them. I suppose it is one of my OCD things.

Today, I was cursing the antibiotics because the cure is worse than the disease at this point. I can’t eat because they make me nauseated yet you are suppose to take them with food. There are… let’s just say… bowel issues as well. The antibiotics they put me on are extremely powerful. So I picked up my bottle of antibiotics while attempting to contemplate the current feeling icky thing. And that is when, for the first time, my brain actually registered what the label said.

“Hello senility! Nice to see that you interfered to such a degree that I forgot how to read and comprehend written words for nearly four days. You caused me to seriously overdose. “

What my brain was seeing: take 2 tablets twice a day until finished.

What the label actually says: take 2 tablets once a day until finished.

No wonder I am feeling extra crumby. I’ve been taking 2 grams of this killer antibiotic instead of one. And now here are the ramifications of losing the ability to comprehend type: 1) I’ve completely wiped out any immune system that the once a week chemo hasn’t already wiped out; 2) I’ll be short 3 days of treatment. That is not good as failure to finish a course of antibiotics can the original infections to come back with even greater ferocity. 3) Increased risk of new infections on top of the 4 my body is currently trying to combat.

Now, that is scary enough in itself. But the thing that has me the most afraid is that I was senile and the results are dangerous. If you’ve listened to the podcast I did last year re: lupus, you’ll know that my brain and intelligence is of the most importance to me. It is my best asset. I use to be beyond brilliant. I’ve moments of being dull, but this is a new low. Going senile and losing my ability to be intelligent is my biggest fear. I need my brain. I need to figure stuff out. I need my almost eidetic memory. I need to think. I need to rationalise.

And I’m losing it.  Death does not scare me. Perhaps losing my ability to walk, yet again, does not scare me. Organ failure does not scare me. Well they do, but not the level of being petrified and terrified. For me, if I lose my brain, I do not want to be living any more. I do not want to be one of these people who no longer recognise their loved ones and needs 24 hour care. There is no point in being alive any more as you’ve lost your ability to truly experience. And I wish Canada had laws like Holland does that supports some one if they want to be euthanised. I already have it in my living will that no extraordinary measures are to be taken to safe my life. I do not want to be hooked up to machines. I want to die with dignity.

Well this is depressing isn’t it. I think it is safe to say that I am once again in a state of grieving. That is one of the sucky things about lupus, you are always in some state of grief and it doesn’t get resolved, unlike with the death of a loved one. I miss my brilliance.

And I think that is all I care about this right now. Only sharing it because the lovely Denise Hudson (@RangerDenni), who has been one of my greatest supports during this last fight, said I should.