Archive for the ‘personal’ category

Because Some Stories Are A Wee Bit Too Long For Twitter

June 3rd, 2011

For approximately seven days, Kid2 has been trying to get the Spice Girl’s song ‘Wannabe’ stuck in my head. First, don’t ask me how he knows that song. I have no bloody clue. Second, he picks up too many of my evil tricks. Example: Kid2: “Do you know what I don’t get?” Me: “Quantum Physics?” Kid2: “Well, yeah… but… Damn it! You made me forget! Damn you, vile woman!”

As I recently announced on Twitter, Kid2 is terribly sunburned. He has the misunderstanding that this gives him extra room to be cheeky. He may be correct on that assumption, but we will never tell him that. I went into the kitchen to make some tea. After seeing me, he started to sing ‘Wannabe’. That is when I began to sing, “I spank your ass til it’s red. I spank your ass til it’s red. I spank your ass til it’s red”, to the tune of Willow Smith’s”Whip My Hair”.

Before I continue, let me assure you, I would never spank his ass til it’s red. I would never spank it, period. He knows this. I was giving him back some of the cheek that he was dishing out at me and I thought I’d do it at the expense of his cheeks. Let’s not turn a cute story into a discussion on spanking, joking about it, parenting styles, etc. Thank you. Now back to the story.

He looked at me, stunned, for a few moments, not sure how to respond in an equally annoying and quippy fashion. After a brief pause and moments hesitation, he said, as he was bending over, “Go for it. May as well have my ass be the same colour as the rest of my body.”

I think he gets the point for this round.

Remembering To Breathe

May 29th, 2011

Apparently it’s been a month since I’ve updated this space. I’m not even sure where to begin with things. I’m very much in my cave at the moment. Those who follow me on Twitter may be surprised to read this as, in public, I appear to be quite sociable. This may sound like a terrible thing, but my public “appearances” are very much work. Sometimes, I wish I still had the luxery of completely withdrawing, without sending out so much of an “I’m still alive. No need to worry.” message. There are a lot of days recently where I’m so very tempted to just completely unplug, once again.

But I can’t do that. As comforting as that thought is, there is a large part of me that is thankful for the fact I have a “job” which requires me to stay somewhat in touch with others. I know that if I were to unplug, I would miss doing every thing I do. I would also miss all of the outpouring of quick burst of support on Twitter. I would not miss the current sense of being overwhelmed by way too many things. But when I do my pros and cons lists, the pros are still outweighing the cons.

In the last month, I’ve had to launch my new radio station a month early due to circumstances beyond my control; I’ve had to purchase a “new” computer because my love of near 7 or 8 years died a month before I was ready for it to die; my health has been a rollercoaster from hell; I’ve had unexpected and emotionally challenging changes in my personal life; I’ve taken on another job (you don’t need to say it, I already know what you’re thinking); my host transfered my sites to a new box, plus a change of theme on Geeky Pleasures, leaving me to have to rebuild part of Geeky Pleasures; my World Lupus Day update to the Lupus Awareness Virtual Art Gallery crashed and burned; I had someone rip me off for a bunch of money; plus loads of other things which have left me wanting to tell the world to just fuck off.

Now, if the above happened gradually over the course of the last month, I think I would have felt less overwhelmed. But the majority of it happened within days of each other. No sooner would I figure out a solution to one problem, another one would rear its ugly face, leaving me to solve another crisis before having the chance to implement the plan to resolve the previous crisis. Superman has nothing on me.

I’ve had some friends understand that they just need to leave me the fuck alone and let me deal. I’ve had others email me daily, asking if I need to talk and that they are there. The latter is so very frustrating for me. No, I don’t need to talk. Talking doesn’t solve a thing. I need to be left alone and attempt to wrap my head around every thing going on and figure out how the hell I’m going to emerge from all of this in one piece. I understand they say these things to let me know they are there and that they care. But I already know this. I know where to go for help if I feel I should need it.

Right now, the best help is just to give me my space. The more I have to tend to other people and reassure them that I am as fine as I can be under the circumstances, the more I feel overwhelmed and smothered, the more other things don’t get done because taking 5 minutes to answer someone’s email takes away way too many spoons than I can afford to spend, causing me to have to find more “me” time so that I have the energy to do the things that must be done so that my entire world doesn’t fall apart. The other week, every thing became overwhelming to the point where I couldn’t keep my eyes open for more than one hour before I was back in bed for another 4-6 hours.

I have come to realise through all of this that people are still trying to make a cave-dwelling me into a more social me. Coming to this realisation makes me cry. Typing that last sentence and I’m crying again. I suddenly feel invisible, once more. It has been years since I’ve felt invisible. My heart breaks as a result. People say they know me, blah, blah, blah and that they are here for me. Great. Fantabulous. Then please understand that my need to retreat into my cave is for self-preservation. If I don’t, I’ll become overwhelmed, depressed and want to slip, yet again, into complete oblivion. Because what is the point of being alive when you are walking through the world, invisible and unseen. I can’t live like that. I just can’t. I spent too many years of my life being what others wanted and expected from me. I’m almost at the point of no longer caring about others because I don’t feel like I’m cared for, even if that isn’t the reality.

I don’t think it is too much to want people to respect my needs. These are not wants. They needs that are integral to my mental survival. I am a huge creature of habit and routine. My routine is necessary for me to be able to navigate my day to day life. The slightest change or deviation from my routine and I am filled with anxiety, my brain becomes twitchy and I feel as if I am drowning. I become extremely overwhelmed. There are always things that I cannot plan for. Those things are only manageable because I know that when I wake up in the morning, there is a set of things that will occur. If those things don’t occur, if there is a change, even if slight, it makes dealing with the outside world feel impossible. So when something as simple as waking up in the morning, reading my email and checking my overnight tweets is longer possible or the way in which I have to do that task changes… well for me it isn’t a simple change and I need more space to navigate the world until I can find a new routine and new normal.

(I feel like such a cow sharing all this. As much as I need to assert my boundaries—thanks to the horror that was my childhood—I feel like a little cunt every time I do anything to make sure they are not stepped on or walked over.)

I get very disheartened when people either forget this about me or just don’t want to accept it and want me to behave in a different way because it is easier on them or makes them feel better about the situation. It especially hurts because I don’t think I do this to others. I ask them what they need and then I try my best to accomodate, even if it is difficult, because I know what it feels like to be invisible when surrounded by a sea of people.

It hasn’t been all bad though. This is where the pros outweigh the cons. I had friend drive 2+ hours, round-trip, to bring me a laptop until my “new” computer arrived. I had another friend show up unexpectantly in town, wanting to take me out for lunch. However, they added to the invite that they understand I hate unplanned events and would completely understand if I said no. They would have been happy to just bring me a cup of coffee and talk outside of my house for 5 minutes. We ended up going for lunch. I had 2 hours of actually being heard. 2 hours of being able to just rant without any unwanted or unneeded advice being offered up. 2 hours free from, “I’m sorry.” 2 hours of understanding. It was a much needed mental health break and in that 2 hours, I felt seen, yet again.

Those two events helped to undo part of the horrible that was the last month. Those two events helped to remind me that there are people who do see me. Those two events will help me to re-emerging from my cave sooner rather than later. It will still be a few weeks before I’ll have the required mental energy to really talk to people again. It will be at least 2 more weeks before I can firmly establish a new routine and finish resolving a month’s worth of stupid, messed up situations.

Until then, I ask that you be patient and just wait. I will come out of my cave. I always do. The more you push me to or ask what is up, the longer this will take. Leaving me to find my new center will not send me the message that you’ve forgotten about me or don’t care. In fact, it will do quite the opposite. I know who you are and where to find you. Trust me, please. Especially if you want me to trust you.

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.

Surviving the Fear and Frustration

March 31st, 2011

I’m driving myself mental at the moment. I’m too ill to do anything of great significance. Even typing up this blog is going to be an all day event. There is a very heavy feeling in the air at the moment and it is rather distracting. Currently there is no distraction from that which is distracting those around me and me.

I can’t play games as that requires too much physical activity. Yes, that is how ill I am right now. Mashing buttons is just too much work. I can’t read because my brain is too busy spinning to focus, never mind too fatigued after both a physically and emotionally draining 24 hours. I want to be distracted from the fact that I was hit with a large dose of reality yesterday but that is hard to accomplish when those closest to you are all suffering from the same thing: fear, frustration, helplessness and worry. And nobody wants to admit to it for a variety of reasons.

Things that are normally okay to poke fun at or joke about are currently off the table. I can understand this phenomena when it comes to my relationship. Before going to the hospital yesterday, I made an attempt to tease about something before getting to the seriousness of “Okay, I’m off to the hospital now.” This was not met in a way that would be normal. I was basically told that it wasn’t the time for such things and all he cared to know about was how I was doing. And that is where my inner conflict comes in: on one hand, I am so very grateful that he doesn’t want to make jokes for once; on the other hand, I feel terrible that he has to go through the worry, fear, frustration, emotional garbage one goes through when they make the choice to walk this path with someone. Yes, I do it for him as well but it is really difficult for me to not feel guilty when it is returned.

My children are not good with this right now. They are putting on the best brave front that they are capable. My youngest wouldn’t go to school today. Thankfully his school understands. He keeps asking me, with such fear in his voice at what the response might be, if I’m going to be okay. I really do not like that he is adding the words “are you sure?” to his questions because he knows damn fine that we can never be sure. We can just hope for the best that we caught this latest set of infections in time. And despite the chances being overwhelmingly in favour of the best outcome, things can change in a heartbeat. The rapid way in which this infection spread and took me completely out of the game is proof of this. All I can do is give him lots of hugs, reassure him that I should be fine within the week and tell him I love him. My oldest isn’t talking about it. That is not a good thing.

My friends are sitting there not sure how to react and being very careful to not say something to create more guilt within me. They are being loving and supportive and trying to figure out ways in which they can be of physical help despite the miles that separate a lot of us.

Yet despite all the outpouring of love and support, you can hear a pin drop. The life has been sucked out of the room while every one waits for me to get better and win yet another battle with lupus. The thing I hate the most about this disease is that with this flare, there is a lot of collateral damage. More than I would like. It is taking all of my emotional energy to not erect the wall and push people away because I really hate that people are having to deal with this as well. I HATE IT! And then comes more internal struggles as I am so very appreciative of it at the same time. I really do not want people to go away. I just feel terrible that my disease is the source of a lot of pain and worry at the moment. But I am so very thankful that people are pushing for me to push through, all the while being afraid and frustrated, feeling helpless and full of worry.

All day today I’ve been fighting the urge to say “If lupus doesn’t kill me, my current boredom currently will.” We all know that I find humour in the most inappropriate of places. But even I’m not sure how I feel about that joke right now. It is a little too close to home at the moment. I don’t know why but this latest health crisis has me as worried, if not more worried, that I was after my stroke. It was a very hard reminder about how terrible and sudden lupus can strike. Unlike other onsets of infection, I had no warning. There wasn’t even a little bit of a warming up period. Yes, I’ve had a cold for what seems to be forever. Yes, I’ve been extremely fatigued and stressed lately. But I’ve been no more sick that what is considered “normal” for me. Normally when I get infection, I have a couple days where I think, “Okay… I think something is building up here… I feel just a little bit more off than normal” before the big BLAMO hit. Yesterday, I awoke to “BLAMO! Be prepared for 10 days of high dose antibiotics and at least 2 weeks on an inhaler to keep your lungs open. And if the inhaler doesn’t work, be prepared for oxygen and a nebuliser.”

I’m afraid. I hate to admit that because then other people will become more afraid than they already aware because if I’m not being my normal “I’m fine” self and reassuring every one, something big must be up. But this is what I am thinking. Maybe we are too busy trying to hide from the fact that there is a lot of fear, frustration, guilt, helplessness, anger, worry, heavy feelings going around at the moment.

So how about we make a deal. I will try my best to not want to pull away when you admit that you are afraid and stuff, in an attempt to let me know you care and in return, you try to not protect me from how you are feeling because I know damn fine. I think we are all a little bit sick with worry right now and it may help if we all just admit to it. I know I’ll feel better about things. Maybe perhaps people are watching what they say because they know that I do have a few triggers about these things and things like telling me to rest (because I’m not a child and can take care of myself [stubborn Jules is stubborn]) and people know things like “feel better soon” can cause me to not talk about what is going on because the look on people’s faces when I am unable to tell them I am better soon is heartbreaking.

All of this is just so bloody heartbreaking and terrible and emotional. Screw the physical garbage. That is a cakewalk compared to the rest. The next few days, where I have to sit idly and wait to get better, giving me plenty of time to focus on the emotional junk, is where the real surviving comes in. And just maybe if we all were to admit to the fact this is difficult on many of us emotionally, we will all survive it together and come through it stronger.

Just an idea.

In Which I Survive My First ER Trip of 2011

March 30th, 2011

I wish I could say today began like any other day. But it didn’t. I woke up this morning with what felt like a sinus infection. Within an hour of waking up, my breathing was very laboured and I was unable to catch my breath. Then, within the next hour or so,  I found I had blood in my urine. In less than a 4 hour period, I went from being more normal level of sick to not having enough air to talk and wanting to die because the pain of breathing was so unbearable.

Initiate emergency plan to get my behind to the hospital. Thank goodness I have an amazing landlady to take care of the kids and take me to the hospital in such instances. Unfortunately, today our timing was off and I had to wait a couple hours longer than normal. But what is a couple more hours, right? Well when you have lupus to the severity that I do, a couple hours means that much more time for the infection to spread through my body like wildfire.

I’m going to try and make the rest of this long story short. I arrived at the ER. My blood pressure was much higher than normal. My oxygen levels were starting to take a nose dive. My heart rate was elevated. Taking a deep breath was impossible. Even so they marked me as urgent, I was still coherent so they had to treat the more urgent patients first.

Finally, it was my turn to see the doctor. And that is when the first event took place which makes me hate ERs. ER doctors are great trauma doctors and overall doctors. They kinda suck when it comes to treating patients with diseases like mine.

After she listened to my chest, lungs, felt my glands and tapped my sinuses, she asked, “Why did you wait so long to see a doctor?” I looked at her with a look which probably was not too nice and said, “I only got sick today. I had to wait for transportation and someone to watch my kids. I’m a single mum with no vehicle.” She looked at me as if I slapped her (or maybe she just felt bad) and replied, “Fair enough.” I wanted to call her something not entirely nice. But then I realised she probably doesn’t fully understand that I can be fine (for me) one day and wake up on deaths door with respiratory distress the next day.

And that is when they hooked me up to the oxygen and gave me a nebuliser filled with steroids in an attempt to get my breathing back under control. Once I was done with that, they doses me up with a high dose of antibiotics. Then I had to wait for another hour after treatment for them to recheck my vitals and make sure it was safe to send me home.

That hour was the worst hour ever, because that dude was there. You know that dude. He’s the dude who’s in the ER for something stupid he did and asks every one, “So… what are you in here for?” I hate that dude. That dude was also complaining about how long he had to wait. He wasn’t dying or sick. He was just stupid and either broke or sprained his ankle.

Finally, after giving me a prescription for 10 days of high dose antibiotics and a steroid inhaler to keep my lungs open, they sent me home. Final diagnosis: sinus, throat, lung and kidney infection.

Today’s events were the toughest on kid2. He was terrified that I would not come home. He asked me those tough questions, such as, “Are you having another stroke? Are you going to be all right? Are you sure you’re going to get better?” When I returned home, he was in bed, wide awake, waiting for me. He asked in a very quiet and scared voice if he could stay at home tomorrow to make sure I’m okay. He’s afraid that he’ll go to school tomorrow and come back home with me in the hospital. I can deal with all that lupus does to me. What it does to my children causes my heart to break. He will not be “okay” with this until I’m back to my normal sick self instead of my can’t breathe sick self.

And that is just another small snapshot into the life of someone with lupus. You can be your normal sick one day and then within hours and without warning, needing to be hooked up to oxygen because an infection spread throughout your entire body within hours, putting you into respiratory distress.

And before any one says anything, yes I am taking some time off. I don’t think I have much of a choice. Even if I wanted to work, a certain someone would kick my behind. I’m under orders from a certain man in my life. Geeky Pleasures will not be updated tomorrow except for Stephanie’s weekly review. I may update Geeky Pleasures on Friday. It all depends on how I’m feeling. I will not be doing any work for the station until at least Monday. This means, my Friday night shows will be cancelled. Well, there is a small chance that someone will broadcast for a bit in my place for reasons they can explain if they do.

And if you see me make stupid jokes over the next few days, it is just my way of trying to cope with yet another health crisis.

The Facebook Saga Conclusion… Hopefully

March 29th, 2011

A question on Formspring reminded me that I hadn’t updated you all about my Facebook Saga.

Well I don’t know how much of a saga it was but rather a bunch of drama and frustration. If you do not know what happened, Facebook locked me out of my account two days after some one hacked into my account, plus created a new email account in my name and started to impersonate me in an attempt to scam people out of money.

If you do not want to read (or haven’t read) the back story, as soon as I became aware of my account having been compromised a week ago Saturday, I changed my passwords and did my best to inform my Facebook friends. Two days later, one of those “friends” reported me to Facebook as a scammer and Facebook locked me out, plus they made the contents of my wall so that they were not visible to any of my friends who would try and look at my account.

I was beyond livid, at both Facebook (because if they had done their job, they’d have seen that I was already aware of the situation and took the steps they had me take, multiple times, to re-secure my account) and the person (who has yet to grow a pair and admit to it) who reported me. I even broke Lent and swore at my computer and the people at Facebook after they had me fill out yet another form where I had to prove my identity.

Over 24 hours after they locked me out and 6 forms, plus 3 changes of passwords later, they let me back into my account.

I had to tell them in great detail my most recent activity on Facebook (I had to do this 4 times). I had to send them a copy of my current profile picture. I had to answer a security question. I had to put names to the faces of my friends (this was difficult as I do not pay attention to who has what profile picture and if it isn’t of a face, then I’m really screwed). I had to give them all email address attached to my Facebook profile. The kicker was having to send them a copy of the email the person who was impersonating me was sending to every one. The first time I filled out the form, they said it was optional. Then they came back and told me that I hadn’t filled out the form completely. Thankfully, a couple of my friends had already forwarded the scam email to my regular email address and not Facebook (as some did), otherwise I would have been screwed there.

Anyway, I think Facebook finally became satisfied that it wasn’t my email that had been compromised (this is what they originally tried to tell me) and that it was a case of someone looking through my friends list for people who had their emails listed publicly, created an email in my name and then proceeded to email them. Whomever did this, went to a lot of trouble. Take a lot of time and effort to go through someone’s friends list one by one. As this is the second time I’ve been hacked in a 3 week period, it is difficult to not take this as a personal attack. Especially because of the time involved in this last one.

A couple of protips:

  1. Do not make your friends list public. To hide it from every one or every one but your friends, go to your privacy settings – connecting on Facebook and change the “see your friends list”.
  2. Do not make your email public. To hide your email address, go to your privacy settings – click custom settings – change all your contact info so that only you can see it. If someone wants your email, phone number, IM, address, etc., then they can take the time to send you a message on Facebook.
  3. I also have my profile almost completely private when being searched (was at the time of this as well, except stupid me had my friends list public). I highly recommend you do that. When scammers take the time to parse your profile to find information to use (they even used my children in their scam email… another reason I don’t give out their names in public or online), it is important to take these steps.

I really hope this is the end of the cyber garbage for a good long time. I can handle trolls (unfortunately they don’t take the time to come out and play that often; the majority of you are so very wonderful). However, when someone goes to such great lengths to either hack your websites or to impersonate you in an attempt to scam your friends, it is very difficult to not just throw your hands up in the air and walk away. It is quite difficult to remain rational, reminding yourself that it is random and not think that someone is out to get you, especially when it is 2 random attacks in such a short period of time.

Needless to say, the stress of this last month has finally hit me really hard. My body has exited fight mode and is now crashing hard. Hopefully, I can carve out some “me” time soon.

And once again, I’d like to thank you all for your support. My life gets really crazy at times and the fact there are so many of you who support me through it and make it feel safe for me to share the crazy means a lot. <3

So Full of Rage and Junk

March 21st, 2011

I am so angry! RAGING!

When does enough actually become enough? If you’ve been following my happening on either Facebook or Twitter, you know that despite the really awesometastic stuff that has been going on, there has been a lot of cow dung as well.

A couple weeks ago, Geeky Pleasures and the Lupus Awareness Virtual Art Gallery were hacked, without mercy, for close to 72 hours straight. I almost had to pull them completely offline and start from scratch. Just when I think I can breathe, on Saturday I found out, while I was on-air no less, that my Facebook account was hacked. The person who hacked my Facebook, created a ymail account in my name, accessed my friend’s list and proceeded to email every one who had their emails listed publicly that I was in Londan, England, had been robbed and to please send money fast. The hacker also changed all of my privacy settings and sent a bunch of chat messages to people (as me) asking them to email me at said ymail address.

Some of my friends are smart and decided to email me both on and off Facebook to let me know what happened. I did all the necessary steps to resecure my account (because unlike some of my other friends, I am not an imbecile) and updated my status twice to let people know my account had been compromised and to ignore any emails or chats from that have anything to do with ymail (which I don’t even have a ymail account) or being stranded in London.

I thought it was done and dealt with. WRONG! Because one of my supposed friends decided to report me to Facebook and have my account locked. I found this out after receiving the following email:

Hi Julia,
We have locked your account for security purposes. Our systems indicate that your Facebook account may have been compromised by cyber criminals attempting to impersonate you. These criminals often will try to trick your friends into sending them money by claiming that you are stuck in a far away location and need assistance. It is likely that your email account has been compromised as well. As such, we have sent this email to all email addresses recently associated with your account. Obtaining access to a victim’s email is one of the primary ways these cyber criminals have been operating. Please take the following steps to regain control of your account:

* Reset your email passwords: Select new and unique passwords for all of your email addresses. Do not use the same password for different online accounts as this allows hackers to easily gain access to your other accounts, such as Facebook, once one account has been compromised.
* Disable email forwarding (if enabled): Check the Preferences/Settings of your email account to make sure the scammer did not add any unauthorised forwarding rules to your email. This is becoming a common practice for scammers to use, so it is important that you complete this extra step. If you need further assistance with this, please contact your email provider.
* After you have performed the above actions, click on the link (labeled ‘Proceed to account recovery’) at the bottom of this email to recover your account. You will be prompted to prove your identity in order to regain access.

It is very important that you complete the above steps in order to protect yourself and your friends. Please pay close attention to suspicious activity on your email account. Another individual may be reading and responding to your messages.

Hello idiots at Facebook: I did that TWO DAYS AGO when my account was compromised.

This cow dung just actually caused me to break Lent, AGAIN, because I swore at my computer when Facebook told me this, YET AGAIN:

Thank you for completing the necessary steps to protect the security of your account.

We are very sorry for the inconvenience, but at this time our security systems are unable to complete the verification of your account.

In order to continue with the account recovery process, please contact our User Operations team.

I already filled out that bloody form after you sent me the first email and making all the necessary changes AGAIN. How many freaking forms do I have to fill out??!! How many times do I have to change emails and passwords before you let me back in!?

One of the things that really pisses me off about this the most is that one of my so-called friends would have had to report me to Facebook. It boggles my mind that the people I know in real life I feel as if I can’t trust and the so-called strangers on Twitter have to be some of the best people and supports that I’ve ever had the pleasure of knowing. I’m almost tempted to delete all of the real life people because you think a friend would take the time to see if you were aware of the situation or not, instead of reporting your account to Facebook.

I’m livid. Absolutely livid. I still have hours of work to do and now I will not be able to finish it tonight as it involves posting things to the station’s Facebook page. I have no idea when they will let me back into my account.

I wonder how many of my “friends” will quietly remove themselves from my list after reading this (if they take the time to) and after I update my status to call out the imbecile who caused me to be locked out.

Sometimes I wish people had to take a competency test in order to be allowed to use the internet.

To my many friends and supporters on Twitter: You guys are awesome! Thanks for being there while I rant and rage, offering me support and laughs.

To my friends on Facebook who’ve actually been there through all this (whenever I’m allowed back on to post this): You guys are also awesome.

To the rest: Prepared to be broomed. I have enough to deal with without my private place turning into a place I am loathe to log into.

Yes, Jules is very surly at the moment. But really, enough is enough. The line must be drawn. HERE!  This far, NO FURTHER!

*Huge Sigh*