Archive for the ‘chronic illness’ category

In Which I Am Deeply Touched and Overwhelmed With Emotion

October 29th, 2010

It is difficult for me to express myself when I become emotional. I know I’ve said this many times before and at times I probably sound like a broken record. I have a hell of a time coming to some form of rational expression. And this past month has been one long emotional roller-coaster.

I have this “thing” where I need to understand as much as I can about anything I come into contact with. This also translates into a need for understanding from others.  And at times such as these, I find is even more paramount that people understand where I am coming from, as the cause for this emotion is incredible acts done by others. I am very good at saying I feel (emotion) because of (action). However, putting a fitting label to that emotion or translating how that emotion is affecting me remains a near impossible task for me. I need a lot of time to contemplate the state. And until that process is finished, overwhelmed or touched are the only words I can apply. They never seem fitting or adequate enough. A small handful of people understand me to a great extent. One person has taken the time to really see me, understand me and “get” me, when no others can. I don’t even have to attempt to explain it, this person just knows. Which I find pretty amazing as he is emotionally driven and I am driven by logic. But we always seem to come to the same place even if the drive is from opposing sides.

Maybe a refresher on some of my history is in order here to try and articulate all of the causes that have led to this effect. Growing up, I was invisible. I was only “seen” when I showed qualities that made others happy. However, if the real me ever decided to make an appearance, it was quickly told that it was unacceptable. If I wasn’t the perfect and happy child, I was fed messages such as “Jules, you’re a happy child. Nobody likes you otherwise”, or “Jules, you never make mistakes. Nobody likes a failure.” And being as I was a born perfectionist, this did not help. There is a comment on my Grade 1 report card which reads: “Julia is trying hard in all areas. She shows anxiety at times as she wants her work done to a high standard of quality. She would benefit from learning to relax and take some of the pressure off herself.” The last thing I needed was for people to add to this.

Then I developed an invisible illness, which for the longest time, nobody wanted to acknowledge. It was whispered about and gossiped about. I was told I was a hypochondriac. I was told I was not allowed to be sick. One comment that really struck me to the core when I was very ill as a child, “You cannot be sick. I grew up with a sick mother and there is no way I can handle a sick daughter.” I had to hide everything that made me who I was: physically, emotionally and mentally.

And now I have people who see me. And I get really emotionally overwhelmed when they do things to illustrate this to me. When you go your entire life being invisible and then suddenly you are visible, there is quite the adjustment. Well for me there is. I’m not always sure what to do with it beyond saying thank you, that is means a lot to me and is so very appreciated. Unfortunately, that never seems like enough.

I’ve had people reach out to me in the last year and a bit in ways that I find extraordinary. And I will admit, there is the small, broken child in me that feels it is undeserved and questions it. The rational part of me knows I deserve it. But feelings and rational thought are not all that congruent. The result, I find myself struggling to incorporate the two and be comfortable with it all.

As with the World Lupus Day in May of this year, some very amazing support has been shown towards me. However, I have to say this past month has been a month that has been filled with turmoil. There has been so much crap thrown at me. I’ve had a lot of extra work to do (I’m not complaining as I did bring it upon myself). My health has been very poorly. But despite this, I haven’t found myself thinking a single time this month, “Why me!?! I’m a good person! Why do I have to have all of this shit?!? What have I done to deserve this?” Tears have been shed, yes. But those tears are the result of these beyond amazing things people have done for me and have said to me. I honestly do not think I would have survived this past month without all of the people who’ve shown me even the smallest bit of kindness and appreciation. It may sound trite, but I cannot think of any better words at the moment.

Not only have people accepted that fact that my brain does not work like “normals”, they’ve accepted the periods where I have been dark instead of my normal positive self and they’ve accepted my disease. People choose to listen to me when I need to vent. People have chosen to walk this road with me. And a good chunk of these people who’ve made these difficult choices have done so because they want to, not because it was asked of them.

I was fed messages telling me that nobody will ever love and accept me if I did not remain perfect all the time and that nobody loves someone who is ill. I was told nobody would ever be with me if I was anything less than expected. Despite being told this is how the world works, I still went out of my way to be there for others in any way that I could. I never expected that it would ever be returned. Yes, I had hoped it would be but I’ve never done things with an agenda or with this idea of, “If I do this, they will owe me.” Given this, it takes me a while to incorporate this new, unexpected reality into my preexisting schema.

Normally, I hate to single people out who’ve touched me because I never want people to feel they are any less appreciated than others. I know how that hurts. I don’t have a hierarchy when it comes to those I have decided have great importance in my life. I may appreciate them for different reasons, but they are appreciated equally. However, there are three things done this past month (aside from Phil Plait and Stephen Fry helping me to spread awareness) that really touched me to my core that I think deserve special recognition.

The first thing was done by JoAnn Abbott. For the Lupus Awareness Virtual Art Gallery, she folded 1000 origami butterflies and sewed them into curtains. She started this project back at the end of April. So for 6 months, she poured her heart into it. Now if that wasn’t grand enough, she added a lot of personal touches to some of these butterflies by including pictures of those who love me and I love back, pictures of some of my biggest supporters. These are people that if I were to lose them… well I can’t even think about that. You would think JoAnn and I are close friends for her to do something like this. We are not. We have had some issues. I am thankful though that we’ve been able to sit down and discuss them. Our issues don’t have anything to do with dislike but we do have conflicting personalities. Despite this though, I believe I can consider her a friend. She tries and her effort causes me to want to try in return. And I can say that regardless of what issues we may have, she does honestly care. And for that, I am grateful.

The second thing was done by Stephanie. She contributed yet again to the art gallery and what she did was beyond words touching. It was such a wonderful gift and I was shaking when I read it yesterday. Her contribution went live today. Please read it.

And finally, there is Joe. Dear, sweet, Joe. The man who teaches me about my emotions through logic. The man who always finds the right thing to say exactly when I need it. I don’t even need to say something is going on with me. Before I get the chance to, he sees what is going on and will  do or say something that allows me to move forward. He brings a calm to the center of my storm. Amazingly, he finds new ways to surprise me. Seriously, this is not at all easy.

Earlier this week, he made an announcement that he’d be reading The Halloween Tree as a special broadcast on Halloween. And then yesterday, he announced on Twitter that this special broadcast would be to raise money for lupus charities. Halloween marks the end of World Lupus Awareness month. I cannot say why this event has me a quivering mess without getting too personal. I can say he had already done enough and more than I could ever expect from him. He may tell you otherwise. He may even claim he hasn’t done enough or could never do enough. But I’ll argue differently.

And just when I think I’ve had enough awesome events to cause me to go into an emotional tailspin, within a couple hours of announcing this event and the donate link becoming live, Joe reached 60% of his fundraising goal. Because of this, Joe has increased his goal from £100 to £150. Seriously people, the fact people are acknowledging Lupus and supporting Joe’s event… all I can see is that it feels weird not being invisible as that is how I spent 33 years of my life. If you cannot attend on Sunday, please check out http://www.justgiving.com/JoeLamb. Regardless if you can or cannot attend, or if  you can or cannot donate, please pass on the link and information.

Anyway, I think I’ve babbled long enough and have vented some of this emotion and tears. Now, I must get back to work. There are still two days worth of updates to the gallery and a bunch of other work I need to do. Even so I know I’ll survive the last couple of days emotionally thanks to all of your support, I will not physically if I am up all night instead of resting.

You all are rock stars. And I feel like some inept buffoon, unable to articulate how much I truly appreciate it all.

Thank you for reaching back when I have so clumsily reached out. <3

Insert Clever Title Here

October 16th, 2010

Holy exhaustion, Batman! But for the first time in quite awhile, I’m very content with this exhaustion as it is the result of more positive events than negative. Yes, part of the exhaustion is a result of this never ending Lupus flare. The majority of it though, I’d have to attribute to a couple of weeks that have been out of this world and coming down from a really big adrenalin rush. My life is feeling quite surreal at the moment, filled with a lot of beyond HOLY SHIT moments. And for the first time in like forever, I don’t feel bad bragging about them. I don’t feel any guilt giving myself a well earned pat on the back. Just over one month ago, this was not the case.

I mentioned in my last blog, that the wonderful Phil Plait sent a tweet about the book I created for the Lupus Awareness Virtual Art Gallery. That was super awesome of him and caused me to squee. This project is obviously of super importance to me, so it is beyond words wonderful when someone who has more influence than I do agrees to help promote it. And just as I was getting over the glow of that, Stephen Fry sent a tweet about it. I could have vomited due to excitement.

The first email I read on Monday morning was to let me know that a tweet would be going out on Wednesday regarding it and at what time. It was very nice to receive a warning so that I could alert my host and prepare for the overload of traffic. It was also the best way I could have started my week. However, hardest damn moment of squee to keep to myself. I thought I was going to explode while I waited.

I knew there was no way I was going to sleep the night that the tweet was to happen. Are you kidding me? This is Stephen Fry! And even so I was stupid with giddy over Phil’s tweet, for me there is the difference between the two. Phil was on my radio show when it was on the air. Phil helped me out with my book, From the Mundane to the Insane. Phil has linked to Geeky Pleasures and this blog a few times now and the list can go on. Each time Phil does these things, I get stupid with giddy. However, even so I’ll never probably get completely use to it for a million different reasons, he is different than Stephen Fry. Stephen doesn’t know me from Adam, where as Phil knows me to a certain extent. And well, obviously Stephen’s influence is a bit more far reaching. Now that I read what I’ve written, I’m afraid that it may sound a wee bit smug. I hope not. I’m still just really dumbstruck over the overwhelming nature of it all.

This has been a really good month for Lupus awareness. Before the month started, Wil Wheaton and John Scalzi released Clash of the Geeks, where all the proceeds are going to The Lupus Alliance of America. And then Phil and Stephen help promote my pet project… four people whom I have the hugest respect for have done things to make this Lupus warrior “obnoxiously happy” as one person put it. I’m content with things. I feel as if I’ve made a difference, even if it is a small difference. And for me that is very important. I need to feel that. It helps me to come to terms with living with this terrible disease. And for once (but only on Wednesday), the stupid House jokes didn’t bother me. I actually found them humourous considering Hugh Laurie and Stephen Fry are good friends. I did feel sorry for Stephen though, as his reply stream on Twitter was filled with them and he probably missed all of the thank yous he received.

Now if that isn’t enough to put some much needed sunshine in my life, I started on another project this week. As if I wasn’t busy enough with Geeky Pleasures, the art gallery, this blog, The Lupus Magazine, Nerds in Babeland and Star Wars vs Star Trek. But the art gallery will be done with its updates in two more weeks (until May), The Lupus Magazine is monthly, Nerds in Babeland and Star Wars vs Star Trek are whenever I find time, this blog whenever I’m inspired, leaving Geeky Pleasures as my only daily thing. This new project is quarterly and it is another cause which is near and dear to me. That is all I’m going to say about that for now but it really is something that I am extremely proud to be a part of. There should be a full announcement regarding it on Geeky Pleasures this week.

Those who’ve read my blog for awhile now know this past year and a bit has been very rough on me. My health has not been cooperating. Money has been a huge issue. On some days, things in my personal life can be enough to drive me to scream. But you know what, I’m content. My ass may be getting kicked at the moment but I’m still kicking ass in return.

And from time to time, I think it is okay that I give myself permission to say, “Look world! I’ve done something pretty damn groovy!” and not worry that it looks like I’m being boastful or vain. Now if only I can get back to feeling as if my life is real (who am I trying to kid, right?).

Let’s Show Them A Whole New Meaning For Lupus Flare

October 9th, 2010

The first week of updates to the Lupus Awareness Virtual Art Gallery were a success if I do say so myself. Not only did I receive a handful of really fabulous submissions but I’ve received some very nice feedback. The free eBook and audiobook I created for the gallery got a really nice boost of traffic thanks to a certain Bad Astronomer being nice enough to send out a tweet regarding it. That same day, the gallery was nominated for a Mashable award in the Most Creative Social Good Campaign category and I received a shout-out in a Mashable article regarding start-up communities. By Thursday, my week was looking more than hunky dory. And then…

I’m neurotic about stats. I knew Thursday was going to be a busy day for the art gallery so I did something I normally don’t do: I monitored the Twitter feed for the search term “lupus.” What I saw that day managed to turn my really elated mood into one filled with rage, anger and disgust in a nanosecond. I saw multiple Twitter accounts tweeting about a natural lupus “cure.” Knowing it would cause my blood to boil but being the type that need to know all information available on any given topic, I clicked the links. Sure enough, I became all shades of livid. I’m not going to give links, but I will give you enough information so that you can find these links on your own and inform yourself on this quackery which is preying on those who are desperate for a cure.

The link led me to one of those used car salesman type, pages upon pages, sales letters. You know the ones I am talking about, with highlighted text and trumped up user testimonials where you have to scroll down for what seems to be an hour to find out cost and purchasing info. It contained thing such as (to paraphrase): “This will make you better. Ignore doctors and research, it is all BigPharma conspiracy!” and “I now consider my cured! I can show you the cure for a fraction of the cost of what you pay your doctor.”

I sent an email venting about this. Yet another piece of woo for me to have to battle. I sent a tweet about it so that I wouldn’t allow the anger, threatening to consume me, to ruin what was an overwhelming (in a good way) day. I had let it go, even so all day long multiple twitter accounts were sending the same garbage link. And then last night, I saw the following status update from one of my fellow Lupus Warriors on Facebook:

LIVID! Offended! Lupus Snake Oil Salesperson pissing me right the F off! I will NOT be adding your snake oil sales pitching freak ass to my friends list. You and lupus can both kiss my mixed breed ass.. and bloody hell, there go some of my peeps ogling over the fuckers tent! WTF?!

My reactions consisted of:

Is it that fucking book! “Find out how I “cured” my Lupus at a fraction of the cost that doctors charge you with their BigPharma conspiracy meds?”

You should have seen me rant on Twitter yesterday when I found a link to it. And I send a really ranty email re: it.

UGH! Unfortunately, there are people desperate enough to buy into that bullshit.

After some discussion, it was discovered that we were talking about two different books! Two different books selling the exact same bullshit but disguised with different packaging. I asked for the name of the Facebook account who is going around trying to friend every one on  Facebook with Lupus in their profile, in an attempt to peddle their snake oil. Why?

Maybe we should request to be her friend then bombard her page with FIRE! Give a whole new meaning to Lupus Flare!

Some people made comments that we could be reported and yet they continue to sell their garbage with no reprimand. My reply to the question, “are we going on a bombard her page campaign? If so then I’ll add her I think she’s friend requesting everyone on our group!” and subsequent comment about being reported:

Well, that is what I plan to do. However, we have to be careful so that she doesn’t report us for harassment or something.

I plan on very simply stating, “How dare you prey on those who are desperate, alone and scared! How dare you make a profit off of those who will grasp at any straw because they are terrified! If you had a cure, why are you not giving it for free? Or why are you not donating the money to Lupus orgs so that they can give real help to others! You make me more ill than my Lupus ever could!”

Then I expect to be blocked and removed.

Yes, we could be reported. But as long as we don’t swear or threaten her, then we should be fine.

It really pisses me off that the likes of people like her can get away with the stuff they do.

[…]I’d rather be reported and be heard than remain silent and people buy into her crap.

I was given the name to this profile, Lupus Bible. I sent a friend request. Thankfully, the page was public so I could see the links to the book they are peddling. And that is when I noticed all of the links on the page were through an affiliate program called Clickbank. I decided to go to this website and search “lupus”. And that is when I discovered 3, THREE of these books:

  1. Yours for only 27 dollars!
  2. Yours for only 37 dollars but act fast! Only 5 copies left before it isn’t avail for another 120 days
  3. Yours for only 47 dollars!

Two of these books had pretty much identical sales copy, except one was a “female” selling the book and one was a “male”. But within the first couple phrases on both of them read:

Close the door, turn of your cell phone and put a “Do Not Disturb” sign on the door

And the title of the other is equally telling:

Warning…
Do Not Read This Page If You Believe Everything Your Doctor Tells You About Your Lupus Condition… Click The Back Button Now, If Your Current Lupus Medication Works For You.

I am beyond livid. It is beyond disgusting that there are people out there preying on and trying to make a profit off of those who are desperate. As one fellow Lupus Warrior stated:

You have a Lupus Cure and you are SELLING it? What is wrong with you? As an alleged Lupus Sufferer you should know what we go through on a daily basis. I suggest if your cure is so good peddle it to the Docs, The Research Centres or the Lupus Charities. Are you for REAL??? Puhlease!!!!

Beware of people trying play into your emotional turmoil and desperation. Science works. Woo doesn’t, except to be emotional terrorist.

Also, they accepted my friend request. I put up my message. Now waiting for it to be removed, reported and blocked.

UPDATE: I do not know if it is because of the fire a few of us Lupus Warriors set to the profile in question or someone complained to Facebook about the offending profile, but it no longer exists! Hopefully, it stays gone. Now if only the 3 books and multiple Twitter accounts would disappear as well.

Reflections From Within The Calm Before The Storm

September 30th, 2010

All week long, my inner monologue has consisted of, “Breathe, Jules. BREATHE!” Tomorrow begins what I’m hoping to be a very busy months of updates to the Lupus Awareness Virtual Art Gallery.

I started this week in a celebratory mood, which quickly change to anxiety and a sense of being overwhelmed. The anxiety stems from thoughts of, “What if nobody contributes? Yes, I’ve already received a handful of contributions, but what if that is it? What if nobody actually cares enough and are just blowing smoke up my ass saying that they’ll contribute something? Worse still, what if nobody bothers to visit the site to see the wonderful things that have been contributed? What if it doesn’t raise any awareness? What if my grand hopes and dreams of actually making a difference, completely and utterly fail?” The sense of being overwhelmed come from exact opposite thoughts. Damn me, my duality and ability to think rationally, seeing all sides of the situation. Plus add illness, children and a busy schedule. This combo can create chaos and this is when living moment to moment really helps.

I am also very… ummm… emotional? I am not quite sure what label to attach to my current state. When I launched the gallery in May for World Lupus Day, it brought up a lot of emotions for me that I normally do not have to deal with on a day to day basis. I’m having to look the elephant straight into its eyes and really face it. This project forces me to be real with and about my disease in ways that I don’t always have to be. The elephant is never completely ignored or denied but I can paint its toes red and hide it in cherry trees when needed.

I’m also still very angry with my disease at the moment. I have been running a fever for two weeks straight, my vision and brain are being attacked, I’m not sleeping, I’m on day three of a migraine from Hades and the list can go on. But I have had some really good emotional supports and have been able to mostly turn my mood around, even so I’m still quietly raging in the back of my mind.

I woke up this morning with an added spring in my step, despite the fact if I were any more tired, I would be dead. I woke up this morning in a very good mood. I woke up this morning filled with hope. I woke up this morning filled with excitement over the possibilities for the month ahead. I woke up this morning going over my final list of every thing that needs to get done today in order to facilitate the smooth operation of both the Lupus Awareness Gallery and Geeky Pleasures. I woke up this morning and began finalizing my battle plan, created to help reduce any undo stress this month may cause. I woke up trying to pin down what my contribution for this update will be.

My joy, happiness, excitement, wonder and anticipation was turned into profound sadness. I am still filled with intense sorrow over the suicide of one of my former students. Today, I learned that a fellow Lupus Warrior committed suicide because she could no longer deal with the pain of this horrible disease. Sadly, this is not uncommon. I’ve said it before and I’ll say it again, I believe the psychological effects of Lupus are much more difficult to deal with than the physical.

It is rather difficult hearing, over and over again, “But you look fine”, “Are you really sick?”, “You have what?” “It’s never lupus”, “What do you mean you’re tired?”, “Stop being so lazy!”, “Oh don’t pay her any mind. She’s a hypochondriac.”, and the list can go on and on and on. It gets really lonely when you are surrounded by people who do not understand. To make it worse, they choose to not understand. It makes it more difficult when it is your own family who makes the choice not to make an attempt to understand. Boy, do I ever have stories about that one. Aside from suicide, a number of those who suffer from Lupus turn to drugs and alcohol. The Lupus road is far from an easy one.

I’m so very sad right now and really do not feel as if I should be celebrating. This sadness led to the following status update on Facebook,

As Lupus Awareness Month starts tomorrow, it breaks my heart to learn a fellow Lupus Warrior could no longer cope with the disease and decided that taking her own life was the only way out. Many of my fellow Lupus Warriors are currently getting their asses handed to them, including myself. I hope we can continue to find the strength within ourselves and each other to continue the fight.

Lord knows I will need the added strength to get through this next month. Today’s news has drastically changed my outlook for the coming month and what I want my aim to be. I never want another person to feel alone again, especially someone who has to live with Lupus. I wish I could reach out to every single of the estimated 5 million Lupus patients worldwide and really let them know they are not alone.

I want to let them know that it is okay to be angry. It is okay to be sad. It is okay to rant and rage and say, “FUCK YOU LUPUS!” I think it is so very unhealthy to paint your face with a smile, all the while you are screaming on the inside. This just leads to a feeling of being further isolated and feeling as if nobody gets it. Which leads to a feeling that you cannot talk to anyone about it because they will try and shove rainbows and unicorns and positive thinking down your throat. Which leads to you feelings as if you truly are alone and isolated. Which leads some to think they have no other option than to leave this life because it is all just way too painful and they cannot go on pretending otherwise any longer. It leads to thinking that if they were honest, they feel they will be rejected.

I want for people to have a place where it is safe for them to just say what it is that they have to say. A place where they do not get met with any sort of, “Cheer up.” A place where they are told, “That sucks! And it is perfectly normal for you to be angry. It means that you are alive and still fighting.” In my own experiences, having such a place has caused my moods to go from angry to once again finding the humour in situations in quicker fashion. A place of real love, understanding and acceptance. If I had not found that place, I do not think I’d be alive today.

I’m heartbroken. Lupus fucking sucks big blue hairy monkey balls.

Maybe I’ll find a way to dedicate the Lupus Awareness Art Gallery to all of those Lupus Warriors who couldn’t find their place and succumbed to the part of this disease that is the hardest part to battle, the psychological effects. Their battles and their pain cannot go unforgotten or be in vain. I just don’t know how to accomplish this without it being a downer, even so it is really quite sad. I want their lives to be acknowledged and celebrated for all that it was, both the good and the bad.

I don’t know. Maybe I’ll figure it out. I’m just really heartbroken right now and feeling a bit useless, with many thoughts of “I wish there was something real I could do”.

So there we have it. The good. The bad. And the down right miserable. I suppose bottom line as I take time to reflect in this calm before the storm, I still hope…

The Lonely Among Us

September 20th, 2010

I am not quite sure where to begin with this. I’ve said a few times today, “I DON’T UNDERSTAND!” However, the reality is I understand all too well. Perhaps that is why my heart is breaking into trillions of tiny shards filled with sadness, grief and overwhelming loss.

The first email I read this morning was to let me know that one of my old Sunday School students hung herself last night. She had just turned 27 a couple months ago, her son just turned five last month and had his first day of Kindergarten last Thursday. Aside from her son, she leaves behind 2 sisters, 1 brother, her dad plus many nieces and nephews. And because we grew up in a town of 1200, a community filled with grief and broken hearts. This loss is being felt on a global level.

She was so beautiful. She was kind, sweet, loving and caring. She had a smile and a laugh that would light up the darkest room. I wish she didn’t feel so alone and was able to shine the light she showed to others, towards herself. She was loved greatly. I wish she felt she had someone to turn to. I tweeted earlier,  “I wish you could CTRL+Z your day.” That tweet was directed towards her. I wish that whatever that final straw was could just be undone forever. Her Facebook page is full of messages about how she was loved, will be missed and how people do not understand, especially when some just saw her shortly beforehand. We will never get these answers. There was no note. She was one of the lonely among us.

I’ve been one of the lonely among us. I am not ashamed or afraid to admit this. I battled a great deal of depression as I was growing up. If you had my life, you’d understand. I grew up with both physical and sexual abuse, neglect, alcoholic and mentally ill parents, and the list goes on. I first thought about suicide when I was 9. I attempted suicide for the first time when I was 14. I continued to have suicidal thoughts until my late 20s. I was surrounded by many people but always felt so very alone and isolated. Thankfully, I learned how to reach out and vocalize those moments.

There are lonely among you right at this very moment. You work with them. You go to school with them. You socialize with them. You take the bus with them. They paint their faces with a smile, all the while they are screaming and crying on the inside, afraid of whatever the demon is that haunts them.

The last little period has been very difficult on me. I have had moments of feeling alone and isolated. I’ve been stabby and angry. I’ve lashed out and have told people to bugger themselves with their rainbows and unicorns. But I thank whatever it is you want to thank at these times that you all realize I’m just angry and venting. Because if it were not for your rainbows and unicorns and well wishes, I would once again become the lonely among you. There is a fine line between having moments of sadness and clinical depression. This line is so very easy to fall over, however it is a mountain to climb in order to reach the other side once again.

I saw a forum post the other day asking how often do you talk to strangers on the internet. Until they had become a member of a certain community, the idea to reach out to strangers never crossed their mind. For me, the internet is a life jacket. Because of my Lupus, I have to spend a lot of my time either in bed, resting or just generally avoiding the general population of the world because their little germs can kill me. Lupus isolates me both psychologically as I think people do not understand and physically. If I did not have all you wonderful people who reach my eyes via fiber optics and code, my mental well being would be completely different. And I know I am not the only one (for whatever reason), who has to spend a lot of their time as a shut-in.

I really do not think I could ever properly thank every single one of you who has ever showed me any type of caring or compassion. A lot of people have this idea that the internet is evil and bad. My family does not understand how I can consider some people whom I’ve never met in meat space to be real and true friends. Well those people who are codes reaching my eyes and are “Strangers” to those who don’t get it, reach out to me and support me even so I’m just code reaching their eyes as well. That is more than I can say about the majority of the people I know in meat space. Thank you for being my friend. You’ve probably helped save my life more times than I care to admit.

Today, my heart is breaking for every single one of the lonely among us. Your pain is my pain. I feel it to the very depth of my soul. I wish I knew who you are so that I can pass on some of the love that has been given to me. I wish I knew who you are so that I could give you a hug, even if it is just an ehug. I wish for you to find peace and understanding.

I hope that the person I just lost has found some peace. I wish she didn’t feel so alone and picked up the phone to dial the crisis line.  I wish she wasn’t the lonely among us. And I hope her family and our community can find some type of closure soon. This will be difficult as we will never know for sure why. All we can do is speculate and make educated guesses.

Die In A Fire, Lupus!

September 19th, 2010

I think I should start this blog with a disclaimer. Any angry remarks directed towards people is not directed towards anyone in particular. I’m just angry at the moment. I’m in a lot of pain and am just overall “stabby”. It is quite difficult to remain my normally rational self when my body is saying, “Oh. You want to be productive today? HA HA! I’m gonna fuck up your vision, put sores in your mouth so that eating is painful, boil your blood and cause you to pass out for 4 hours thus messing up your sleep schedule more than I have already and there is isn’t a bloody thing you can do about it. You’re MY bitch today!”

I am so angry right now. I haven’t been angry with my disease in a very long time. I’m at the point where I’ve lost all compassion and sympathy for others. Any time I hear someone complain about anything, I want to scream, “I’m fucking dying but you don’t hear me pissing and moaning that I had to crawl to the bathroom today, do you?!? I had a stroke when I was 30. 30! I had to relearn how to walk, talk, dress, feed myself and a bunch of other things. I had to have people wipe my ass and my own children feed me dinner! And you’re complaining about what exactly? Suck it up buttercup and get on with your life! Oh… you want me to understand what it is you are going through? Please tell me then, have you made any attempt to understand Lupus and what it is that *I* am going through? No? Then shut your hole!” But then my brain tell me, “We are all dying, sweetheart. Some of us just quicker than others.”

I am at the point where anybody wishes me well, I want to say, “Take your fucking unicorns and rainbows and bugger yourself with them! Your well wishes do not cook dinner for my children when my body has decided to knock me out for hours, when the intent was just to lie down to relieve pain in my back! Your well wished do not wash the dishes in my kitchen sink! Your well wishes do not remove all of my hair that is falling out, currently clogging my pipes, out of the bathtub drain! Your well wishes do not provide me a car or transportation to get my grocery shopping done! Your well wishes do not provide me a car or transportation to the doctor’s office so that I can get weekly injections in my ass checks and joints! All your well wishes are doing is reminding me of the fact I do not have the bloody physical supports I need right now in order to get better!”

Fuck, I am such a hag! I told you I was stabby. Because really, if I were not this ill, I would appreciate it. But truth be told, I haven’t been this ill since right before my stroke 4 years ago. And before that, when my road to diagnosis had begun and I had to stop dancing because I could no longer move any joint in my body without it feeling as if knives were being twisted and turned inside of them.

People keep telling me to take it easy and rest. It seems all I do is take it easy and rest. Yes, I keep myself busy with my websites and contributing to a few others but lately, a good part of my day is spent lying down in between times that posts are scheduled. I’m not doing a lot. I actually feel quite useless and as if I were a lame horse that should just be shot and turned into glue. I don’t like feeling this way. What I don’t like even more, is the tongue lashing my brain gives me when I feel this way. The venom above directed towards nobody in particular, I also direct at myself. I tell myself to quit feeling sorry for myself and just get the fuck on with my life because I am not a bloody victim. I’m a survivor damn it! But I am human. I would be more worried if I did not get angry from time to time.

And then I read something from one of my fellow chronic illness sufferers filled with rainbows and unicorns and “positive thinking will get you blah blah blah blah” SHUT UP! Just shut the hell up with the positive thinking stuff! I bloody well know this. Have you not read or listened to me talk. I know how to survive my disease, both mentally and physically. I get that you are trying to help but SHUT UP! Your rainbows and unicorns are invalidating my feelings. These are MY FEELINGS! Let me bloody well have them! They will pass and I will go back to being Data or Spock. Trust me on this! I’m already giving myself a hard enough time and telling myself to cram my anger up my bunghole! I don’t need you to tell me the same thing but disguise it with passive aggressive unicorn and rainbows!

Yeah, I’m angry. Irrationally, I feel as if I am failing my children, myself and my friends. I cannot be the things I think and feel I should or need to be and I have no control over it. I’ve been having to decide if I’m going to up my normal meds from 7 to 9. The extra 2 will just be temporary. But I am having to weigh “is the cure worse than the disease”. Because these two treatments require me to go to the doctor, once a week, for painful injections. These injections consists of gold salts in my ass cheeks. This bloody hurts! Because of the solution it is in, if you do not completely relax the injection site, the muscle spasms are ferocious. Once, I was afraid the needle was going to snap off because of it. And the spasms continue for hours after ward. And the other is cortisone injections into my joints. Let the 2 inch needle jabbing and digging in between the joints begin! JOY!

So aside from the pain to heap on top of the pain I’m currently experiencing, there would be added fatigue. I don’t have a car and I have no physical supports. I have to rely on public transport. And of course, it doesn’t do a straight line from my house to the doctors office. So what would be a 20 minute round trip (including doctors appointment) if I did have a vehicle, turns into a 20 minute walk (round trip) + 1 hour bus ride (round trip) + 10 minute doctor appointment + time waiting for bus to return home. These trips would require me 2 days to recover from and leave me in a lot of pain. So how am I going to cook dinner, clean and take care of two children? Do I continue with the heavy meds I am already on and hope they get the disease back under control or do I do the extra measures which will make things worse but could bring the disease back under control quicker however, they are not guaranteed to work?

I am angry. I woke up this morning feeling shitty. But as I blogged earlier, at least I had laughter. Well that was before I decided to take advantage of kid2 playing outside and lie down to relieve pain. I ended up passing out. He burst into the house as he always does, exclaiming, “Bonjour, mon ami!” I yelled, “I’m sleeping! How many times do I have to ask you to check if I am resting or not before you start yelling and wake me up!”, causing me to feel like a complete jerk! But I was so exhausted, instead of apologizing like I wanted to for being a sodding mean monster of a mother, I immediately passed back out. I awoke 4 hours later to discover it was 10 pm and the kid asleep. I hope he got himself something to eat. I feel like the worst mother on the face of the planet at this moment. I’m terrible.

I am angry. I have good reason to be angry. But why am I sitting here in tears calling myself an idiot if this is true? Why do I feel as if I have let down not only myself, but everyone around me and most importantly, my children.

I am angry. I AM ANGRY!

DIE IN A BLOODY FIRE, LUPUS!

Saturday Simplicity

September 18th, 2010

I’m ill. I’m ill to the status of turning into a “sucky baby”. I don’t complain unless it is really bad. My Lupus is really trying to kick my ass, showing me no mercy. I haven’t had a flare last for this long in a very long time. Even so I always live with a good amount of pain, I had forgotten just how bad bad can be. I’ve been running a fever since I awoke yesterday. Today, I woke up with mouth ulcers. I’m grumpy. I’m irritable. I’m liable to lash out at any poor unsuspecting soul. But thank Bob for my children. At least they can keep me laughing through all of this.

It started this morning. I got up feeling like shit and as if someone beat the crap out of me in my sleep, yet again. I put on my glasses and hobbled down to the kitchen to put on a pot of coffee. I sat down in front of my computer to check my email and Twitter while I waited for the blessed coffee to brew. Because I’m ill, my vision is also being affected and every thing was blurry and as if it had a white film across it. That is when the following conversation took place:

Me: Where are my glasses?

Kid2: What?

Me: I can’t find my glass. Help me find them. (Starts searching). Wait. Never mind. They are on my face.

Kid2: BWAHAHAHA! OMG! I thought that only happens in movies! Too funny. Mom, that was pro. You are so fail today! Way too funny, mom.

Shortly afterward, his dad picked him up to do some clothes shopping. Upon his return, I hear the following:

Kid2: Mom, look at this! I picked it out all on my own. You want it, don’t you? You’re jealous aren’t you? You’d wear this to your next convention, wouldn’t you?

Me: OMG! DUDE! That is so awesome! YES! I do want it! Man, you’re awesome!

Kid2: *giggles* I knew it!

And just now, the following conversation occurred while I was outside getting some fresh air as I’m burning up.

(After Kid2 and his friend rounded the corner into the backyard)

Kid2’s friend: I hear that you can walk on your hands.

Me: Yes, I can.

Kid2: She can also lick her elbows! I don’t know how she does it. It is freaky but still cool. Mom, show her!

Me: Honey, I’m not feeling well. My body really hurts right now. Otherwise, I’d love to show my freaky skills.

(Kid2 and Kid2’s friend try to lick their elbows while conversing over how they don’t understand how it is possible.)

Me: Fine! I’ll do it! (licks elbow).

Kid2’s friend: WOW!

Kid2: SEE! Told you! They say it isn’t possible to lick your elbows, but my mom can!

Me: Well, what “they” say is false. It isn’t impossible, it is just rare.

Kid2 to his friend: She makes a good point. My mom is a rare breed of person. It is one of the things that makes her so awesome. She’s rare and weird but in a really good way. (To Me) She also doesn’t believe that you squee’d when I showed you my Mario shirt.

Me: Yes, I did squee.

Kid2’s friend: Then you’d squee over my brother’s shirt as he has the same one.

Me: I probably would.

Kid2: Okay, mom. I have to go into the back forest now. I left my winter coat back there.

Me: Why is your winter coat back there?

Kid2: Because I needed it to sing The Mountain Climber song while climbing trees.

Despite feeling like death waiting to happen, at least I can look forward to a day filled with laughter.

Lupus *IS* My Superpower

September 9th, 2010

Now, isn’t that such a strange statement. And today I got to use this superpower to do some real good. This story involves other people and normally I wouldn’t share without first talking with the others involved. However, as the bulk of this story played itself out (thanks to the wonderful internets) on Twitter, I think it is safe to share.

There is this guy that I know. I’ll call him @rulesaremyenemy. I know him through PAX but more specifically, through a group of us Twitter PAXers aka The Twitter Shitters. He has this other friend. I’ll call her @alexandrathegr8. I had no idea who alexandrathegr8 was until a couple of hours ago. She had tweeted something, to which rulesaremyenemy replied, “Sorry to hear that :(. I suggest that you talk to @geekyjules.” Being curious as to why I was suggested as a person to talk to, I clicked on the “in reply to” link to find this, “Parents know. I’ve pretty much been in tears for the past hour and a half. I tested positive for lupus, which runs in my family.”

My heart dropped into the pit of my stomach and tears came to my eyes. I replied, “Please do. I have lupus myself and do a lot of work (including write for a Lupus mag) surrounding this.” Alexandrathegr8 sent back the message, “@rulesaremyenemy Thank you so much. I appreciate that so much. @geekyjules, would you mind if I emailed you? :)” I told her, “Please do!”, and gave her my email address.

I am not going to go into the details of the emails as those are private. I think it is safe to share she asked many questions. There are many things which run through your mind when you face a disease that has a thousand faces and a thousand manifestations for each face. Questions, fears, anger, loneliness, sadness, desperation, naturally come into play. To make it even more difficult,  she lost a family member to Lupus. My heart goes out to her. She has a difficult road ahead of her and she will be faced with a huge amount of misunderstanding from those around her. I really wish I lived closer to her so that I could hold her in my arms and allow ourselves to cry together.

I wish I had that when I was going through this, someone to just hold me and cry with me without telling me it is all going to be okay. Because at the very moment this road begins, you do not think or feel that things will ever be okay again. You have to face things you don’t want to in order to give yourself the best tools possible to tackle this demon head-on.

Unfortunately, she lives in the States and I live in Canada. So all that I could do was answer her questions, give her links to some resources she will need, give her e-hugs and insist upon her once more to please ask me any question at any time and I cried for her. I’m still crying for her. Her life totally sucks right now. It won’t always be this way. She is a smart girl and she will get through this. But this really sucks big blue hairy monkey balls and she needs to know it is okay to admit that. You can have fear yet still be brave enough to fight it.

After we exchanged our first in what will be many emails to come, she tweeted, “i thank god for people like @geekyjules.” This touched me. And I cried some more. When I made the decision last year to start talking publicly about my Lupus, I was a lot nervous. I didn’t want to be known for the girl with Lupus. I didn’t want people to see me just for this disease. It was something my Alfred and I discussed when I was preparing for the interview I did with Patrizia Hernandez for “Love Simple.” Yes, I have Lupus. Yes, it can certainly kick my ass in painful and unpredictable ways. But that doesn’t mean I, myself, cannot kick ass and take no prisoners. I am still quite productive despite Lupus. I still get a lot of stuff done, I just have to go about it differently. Both my Alfred and I were afraid that doors would close, rather than open, for me if I got too vocal regarding my Lupus.

Today, I got to use Lupus to help someone else when they needed it the most.  Today, my Lupus did some good. Yet again today, Lupus was my superpower. I think I needed it as well. Today has been a wee bit painful. I have Chandler Claw Hand and I haven’t even been gaming.

And people wonder why I love the internet so much. A few years ago, I don’t think my Lupus would have been a power in this way. And thank you, rulesaremyenemy, for telling alexandrathegr8 to talk to me. It means a lot! <3

In Which I Attempt To Hold Down My Thoughts Floating In The Aether

September 4th, 2010

Oh yes. You guessed it. It is going to be another one of those rambling thought blogs. I find them necessary in order to vomit out some of the copious amounts of thoughts that run through my brain at any given time.

Many of you are probably aware that the last little period of time in my life has been quite difficult for me: financially, mentally, physically and emotionally. My Lupus has been attempting to beat my ass down in ways that are very painful. In the last week, I think I’ve managed all of 24 hours sleep due to it. My life has undergone an extraordinary amount of change recently. I’ve had many obstacles thrown in front of me. Most days, I feel as if I am running an octagintathlon, leaping and flailing from one event to the next in an effort to finish the trial alive. Winning and finishing unscathed, without any bumps or bruises, is not the goal. Survival and just making it through has become the objective.

I have loved ones who are poorly. I have baby’s daddy’s who are trying to make my life as difficult as possible. I have children who are each going through their own trials. I have family members who I wish would just cease to exist. I have people trying to attach themselves to me, not because of who I am but what they think they can gain from it. There are people who attach labels to me that I am not at all comfortable with. I have fear. I have doubt. I have moments of feeling defeated and then…

Somebody will reach out and say something to me, small things, that mean the world to me. I am all about the little things. This can be good and it can be not so good. It means that I’m easily pleased and can get quite giddy and squee with the utmost ease. It also means that I am easy to frustrate and want to bang heads. Thankfully for those around me, I am more patient than I am not. I can hold myself back in the moments where all I really want to do is rage against something. These small things give me the strength, power and energy to leap and flail over my next hurdle. They help me find my inner strength when I am unable to see it. And they always come when I need them the most. Lately, with such a frequency, it is almost unbearable and I feel as if I am going to explode. Unbearable may me a peculiar word to attribute to something that is quite positive. However, I grew up with more negatives in my life than positives. At times, the positives are more difficult to accept than the negatives.

Examples of these small but enormous things are: friends who know that I have an uncomfortableness around being referred to as a ‘celeb’ (Seriously. People call me that and with greater frequency lately), jokingly telling me on Twitter: “Liek OH-EM-GEE! It’s Jules! Let’s all be fan-kids over her and swoon!” Somebody sending me short but sweet email telling me that something I’ve writing really touched them or when people tell me that I’ve inspired them. And not because of who I supposedly know but for who I am and how I live my life. For me, this is really important. I need this in order to tell myself that living with Lupus is not for nothing. I need to know my life is not in vain and that I am doing actual good, even if it is inspiring just one person. I have been so very lucky to inspire more than just one. Somebody saying something or playing a song when I’m feeling the most vulnerable, reaching out in a very sweet and romantic way, a way that only the two of us know what is going on.

And I suppose this is where part of the paradox comes in. When I started with my radio show and online things, I honestly did not think anything would come out of it. It was purely for my own pleasure and needs. And then something happened. Somehow, I got noticed. For some strange reason, people started to pay attention and I had no bloody clue what to make of it or what to do with it. It was not anything I had intended nor planned. It was not my goal. There is one event that I can point to and say, “This is when I stopped being anonymous.” Sometimes I want to both thank and curse the person involved in this turning point. And then I stop myself. Not because I am not thankful for some parts they have played in it but because I actually earned it. I got the recognition, the head nod if you will, because of my work and talent. It was not asked for. Any recognition or head nods I have received have been unsolicited. In fact, I specifically said, “You don’t need to promote this. It is just for fun.” Well… for some crazy reason, they did.

And I suppose in reality, it is not for a crazy reason. I remember a wonderful conversation that I had a few months ago when I needed help regarding a crazy (but awesome) idea I had for a project (which I still hope to make a reality sooner rather than later). Somehow the conversation changed from tips to sharing moments of  (to paraphrase), “OMG! When did this become our lives?!?” I remember saying something like, “Sometimes I want to ask these people [who have helped in ways that I never asked for or have gone out their way to do something for me], why me? But obviously I’m not going to ask them. That would be stupid.” The response and following conversation will be something that I will keep with me for rest of my days.

The response I received was, “Why not? I mean don’t ask them but I think the question you should be asking is ‘why not you?'” I had a quick reply to that, “Because I’m just this girl from a very small city in Canada. There is no reason for anybody to do anything for me. And yes I realize they are just people too. You know that. But they are extremely busy and probably get a load of stupid requests all the time. And yet, when they can, they find moments for me. Something  I do not expect but is nonetheless appreciated.” And then he said (and I’ll never forget this), “It doesn’t matter what town you’re from when you live on the internet.” This conversation helped illustrate to me that I must be doing something right. That I may have more talent and abilities than I’m willing to give myself credit for. Most importantly, it helped to teach me that I’ve earned (through my own talents and hard work) any moderate successes (that for me, on a personal level, are HUGE) I have achieved. At the end of the day, I can proudly say I’ve gotten to where I am through my own blood, sweat and tears, not through the work of others. And I think it may all finally pay of, with real money (I’ll get to that eventually).

The last week and a bit has been a blur of events. I was finally able to announce one of my sooper sekrit projects (if you missed the news, check out this post and this post over on Geeky Pleasures). I figured out what it is I’m going to write about for clp.ly. And then there are more people reaching out in ways that cause me to want to yell, “SHUT THE FRONT DOOR! I want to tell you to fuck off right now. But only because I don’t know how to deal with this event as you just blew apart my brain!”

One example of this, is someone (not going to name names) leaving a comment on something I posted somewhere which reads, “I just came here to say “Hi Jules!” It was another moment where I wanted to get all melty and d’awwwwh and say, “thank you for taking a little bit of your time out for me and stopping by just to say hi” in ways that are even less eloquent than that, in ways that would leave me looking like a downright idiot. And in reality, I wouldn’t be an idiot but it is a result of me truly appreciating the really small things that people do, especially when there is no need for it.

And then, I received this email (Email shared with permission. Names removed to protect privacy):

Well then, Jules… If I haven’t made it abundantly clear yet…

I’m just this guy, you know? But when I say it, it’s not like when Wil says it. I’m actually at the bottom of the totem pole. So, whenever you do something as gracious as shamelessly finding a way to mention us when there’s no need to… Well… You’re like, MY [Name redacted. Me being compared to this person (not Wil Wheaton) left me at a complete loss for words and rational thought as it is someone I have a HUGE respect for]. It geeks me out to no end. Thank you again and always; I know you’re not just doing it because we’ve become friends, but on that note I’m so glad that we’ve become friends.

It was all I could do to not call this person an asshole for saying something that caused me to become extremely overwhelmed. But the thing I appreciated the most about his comment was not that they likened me to someone I have a huge respect for. It was because they see and appreciate that I don’t promote something just because they are my friend. And it doesn’t matter what it is that I put on Geeky Pleasures, except for the gaming press releases that I receive. It doesn’t matter how big of a name or how small of a name somebody has. I promote things on my site that I truly believe in. Not because it was asked of me. Not because it is expected of me. It is because I truly enjoy it and am very happy that I’m given the privileged to consume these things that people have made (we are not entitled to these things). I want to share the things I like with others. So when I see something I like or believe in, I’ll write about it because I chose to. I get quite pissy when people ask or expect me to mention something.

That being said, if you come across something you think I’ll like, I have no problem with an email being sent to me saying something like, “I thought you may enjoy this.” And if I feel it necessary, then I’ll make a mention of it. Also, if you want me to review something you’ve done, great! I’d be more than happy to. This doesn’t mean it will be a good review, even if you are my friend. It will be an honest review. This is one of the reason I found writing a review for Memories of the Future so difficult.

I’ve also been getting a lot of “guidance” type questions from people in the last couple of weeks. This is very strange. I am trying to figure out when did I go from the person who seeks others for questions and become the person people want to ask questions regarding media related things. Most days I still feel as if I’m a novice even so I’ve been working in various parts of the industry for years. I am still the person who asks others for advice on these things. And now people are asking me. It is such a strange phenomena. Sometimes I want to ask the people who’ve been nice enough to give me their advice, “How do you manage your life without wanting to explode with awesome giddy, squee and excitement over it all? Especially since etiquette tells us, in public, we are not to show our excitement. We are to remain ‘cool’.” But I stop myself because I know they are just normal people, who like me, keep asking themselves, “When did this become my life?!? Holy shit, this is awesome!!”

Now to make things even more awesome for me, I think it is all finally starting to pay off in a way that goes beyond HUGE personal satisfaction. As I’ve mentioned many a times in the past, when I started on all of this, it was for my pleasure only. I never planned, expected nor wanted to make a living from it. It was purely a hobby (in many ways). Then life threw me a curve ball and I’ve had to attempt to turn all these things that I’ve built into money. Without being an egotistical asshat, I am quite good at what I do. I am so very self-critical (I think this is true of a lot of creative types). I know when something I’ve produced is crap (even so others will tell me otherwise) and I know when it is good. I know what my strengths and weaknesses are in any given task. I know that I have many valuable skills, abilities and attributes.

I’ve gotten where I am because I have never been afraid to try. When I applied at the radio station, I went into it thinking I will not get the job because thousands of people will be applying. Sure enough, thousands did. But for some strange reason (well it isn’t strange, I just have a really hard time giving myself compliments), within a couple hours of sending in my application I was contacted for an interview. During the interview, I was hired on the spot and within a couple of weeks, I was asked if I wanted to be the Program Director. I’ve taken many such “risks” since then. Every single time I approach someone about something, I always expect a no. The results have been far from my expectation.

Last night, I decided to take another such risk. I saw another ad. This time for a writing gig which I thought for sure thousands would be applying for. To make it even better, it is a paying job which I get to do from the comfort of my home (something that is necessary). It is a writing job that, in many ways, is quite prestigious or at least has the potential to be. In the application process, you only had 2 paragraphs to illustrate why you think you would be a good addition to the publication. ONLY 2! Well, we all know long-winded Jules is long-winded. I wrote my two paragraphs, gave the links asked for and sent off the email. I went to sleep thinking I would be damn lucky to hear anything back because 1) The ad was over a week old, and 2) I know the industry and I know how much crap has to be waded through to get to the good things. Today, I got a response from the founder and publisher.

I’m assuming he liked what I wrote as he is forwarding my information on to the rest of the team. I suppose you can say I’ve been short listed. This really is a major accomplishment for me. I didn’t fail the audition process. I was able to impress in only two paragraphs. My inner editor did its job (I’m sure some of you wish my inner editor would do its job as I type out yet another blog that is sure to be near 3000 words). And to make me even happier about this success, I was asked my advice (once more), this time as a writer. Keyword here: writer. Not as a blogger. There is nothing wrong with being a blogger but there is this bad taste associated with “bloggers”, “self-publishers”, etc. There is this very unfair image of the blogging community. A very misinformed image, perpetuated by mainstream media. And I do consider myself to be a writer as well as a blogger. So it felt nice to have someone ask me advice “as a writer” and from a publisher no less.

This put a (much needed) added spring to my step. I woke up once more after only a couple hours of sleep, feeling beyond exhausted and like someone beat the shit out of me in my sleep. I was at a point of wanting to curse every thing and every one.

Then immediately afterwards, kid2 came whizzing into the house (my sister has had him for the last 3 weeks). I got extremely happy (because I miss his terribly) thinking my sister was bringing him back 3 days early. He quickly dashed my happy to sad by informing me, “I’m only here to get my iPod charger and then I’m going back to auntie Catherine’s.” However, before my sadness got the better of me, he added, “Can I have a hug?” I said, “Of course! I’ve missed you so very much!” And then he gave me the hardest bear hug he has ever given me. It was so very much needed and exactly at that moment too. My week and a bit has been yet another one filled with really high highs and really low lows. At times, I’m having great difficulties navigating it all.

My children are my reasons. I have been very lonely without the constant chatter from kid2. He will be 12 soon but he still finds excuses to crawl into bed with me. And he still wants my hugs. After giving me the longest and hardest hug ever, he whisked down the hall to get his charger and out of the house he shot. But not before “I love you”s were exchanged. I cried for a bit after he left for two reasons: 1) I was sad to see him leave when he has been gone for so long; 2) He still wants hugs from mommy.

These are just a small fraction of my thoughts floating in the aether and the events of the past little bit. Aren’t you glad I don’t share them all? However, now that I’ve purged some of them, hopefully I can get back to more focused writing soon. And at just over 3000 words, I’ll stop.

Setec Astronomy

August 25th, 2010

You all may hate me after this post. And by hate I mean, you really love me but you are getting even more frustrated with my secrets. Trust me, I’m frustrated with them as well. I swear, if I don’t get to unleash some of the SQUEE, and soon, I’m going to implode in ways that are both ferocious and disgustingly disturbing. It was suggested to me after I wrote my last blog, to write in code. Well, if you actually knew me (and I don’t mean that in a condescending sort of way), you know that would require me completely changing the way I think and process information.

I’m the person who has a hard time with rhetorics. I’m the person who is honest to a fault. The ability to be dishonest is something I need to work on. (Not really. I’m proud of my brutal honesty.) I’m the person who saw a video on Facebook, almost shared it, but was going to add “There is no way she accepted millions of friends requests! Sure she may have received millions, but you can only have so many thousand friends.” But then my brain quickly stopped me. Because the message of the video was to be careful of what person information you share and if you are going to accept strangers on Facebook, make sure your home address is not listed. (The video was about some girl who was brutally raped and murdered after adding the wrong person on Facebook). If I had posted my automatic, “Well that is just not possible and it is a complete over-exaggeration” literal/ skeptical/ critical/ scientific thoughts, I would have come off as cold-hearted and unfeeling. The message of the video was quite valid, but the way my brain works, it automatically goes to the logic of the situation and not the feeling and/or intent. And there was another instance where a comment was left somewhere and my first reaction was to correct a timezone remark. I suppose no harm is done by miscalculating 1 hour. I’ve had to stop reading the comments on that blog because my brain keeps screaming, “That is incorrect!” But then I’d come off as a know-it-all (which isn’t my intent), instead of some person who’s brain works in very peculiar ways. (I swear, I’ll get to the Setec Astronomy soon).

Another suggestion to help me uncork some of my need to share but not quite knowing how to go about it or what to write, was to write about gay rights. Well, I want to. But I am conflicted. In order for me to write about my views on gay rights beyond just saying “I believe they should have equal rights and that is that”, I’d have to talk about religion and my religious upbringing. Yeah… I don’t talk about religion in public. But under the circumstances it may not be a bad thing as it was my church who taught me gays should have equal rights. Whodda thunk? Organized religion being supportive of gays? Some may say, “Only in Canada.” So maybe I will write that post. I just need to ponder it a bit more.

Where was I going with this post? Oh yeah… I have some super awesometastic sooper sekrit things happening right now. I’ve told my Alfred. (Now, that is code! But in a way it isn’t as some know of whom I am talking and if you’ve read my blog long enough, he’s been mentioned before.) And after I’ve shared my moments of squee with him, he is nice enough to put on his logic hat and ask, “Jules, are you getting paid for this?” To which I sigh and respond, “No.” To which he sighs and responds, “Jules…” To which I smile, attempt to contain the giddy and say, “I know. I’ve thought the same things you are thinking. BUT this is giving me more exposure. I get to have a voice outside of my own content. It will give (insert things here) more exposure and awareness. It will give me more credibility. It is for a cause that is near and dear to me (or it is something I quite enjoy, brings me pleasure to participate in and makes me happy). And with all the extra, unsolicited exposure and writing opportunities, hopefully it leads to something paying soon. Because we both know, I really need the money. And even so when I started on all of this just over a year ago, money was the furthest thing from my mind, I am in desperate need of it right now. I’ve thought this through. I know I’ve said a million times that the next time someone asks me to create for them, I’ll ask them ‘How much?’ But these are really special circumstances.” And then he agrees (even so I’m sure he is still shaking his head on the inside but he is very nice and supportive and only wants what is best for me) and says, “That is really groovy! I’m happy for you.” And that is when I cannot contain my happy any longer and exclaim, “ISN’T IT THOUGH?!? This is so totally awesome! I can’t wait until I can share it with every one!”

And I really can’t. It is bloody KILLING me! So, I think I’ve come up with a happy compromise. Hopefully this will accomplish a few things. 1) I can release some of my SQUEE pressure that has left me feeling as if I am drowning and being suffocated by a whirlpool of ecstatic (if that is possible). 2) I don’t divulge the things I really cannot right now. If I were to divulge them, I think future possibilities will turn from many to zero in short order. Yet, I divulge enough for others to be happy for me (even so I think you’ll want to kill me at the same time for a variety of reasons). 3) Fill you in on some things that I feel are safe to share since they have been discussed (even so mostly quietly) on Twitter and other places online. And we all know, once it is online it really isn’t a secret anymore. 4) I don’t come off as some self-promoting, pompous asshat.  I’m afraid some of this may teeter on the edge of name dropping and name dropping isn’t all that kosher. Hopefully I can find a balance here that works for everyone.

So, without further ado:

Secrets That Aren’t Really Secrets: (click on clips below to visit the sites that I mention)

1) There is this awesome site/ service/ blogging tool call clp.ly. I’ve been part of the beta since it first launched. I’m affectionately known as “The Number 1 customer.” I adore them (both the people who work there and the service). And it is safe to say, they adore me. They used my site to demo their service at a tech conference thing a few weeks ago. It felt so unbelievable cool when they asked my permission to use Geeky Pleasures for their demo (and that same day, I awarded their service Geek of the Week). They’ve used Geeky Pleasures in a number of blog posts and were nice enough to feature it prominently on their press page. All of this I’ve shared via Twitter and Facebook but what I haven’t share yet – I was asked if I wanted to be a guest blogger. I said I’d love to. Now I just have to figure out what the hell it is I’m going to write!

Clipped from: clp.ly (share this clip)

Clipped from: clp.ly (share this clip)

Clipped from: clp.ly (share this clip)

If you do any type of blogging and content sharing, then I highly recommend you check out clp.ly.

Now moving on.

2) There is this site. It is still in its infancy. It is dedicated to one of the greatest nerd/geek fights of all time: Which is better: Star Wars or Star Trek? I also featured this site for Geek of the Week. I’ve gotten to know both creators through various different things.

Well, I was asked if I wanted to write for the site from time to time. Are you kidding? Writing about why Star Trek is so much better than Star Wars? Being able to have epic debates, not having to worry about language, throwing it down like never before? Of course! And I can see some people who read this taking a bit of an issue (especially some family members). Especially as I’m helping someone out and for nothing.

However, how can I turn down another space to write about things that cause me to have juicy geekasms? And besides, I want to help them out. If someone didn’t give me a hand when I was a nobody Program Director with a radio show called Geeky Pleasures, I wouldn’t have had the moderate success that I have been able to enjoy over the past little bit. And here is the thing, when those people did what they did for me, it wasn’t because I was seeking any type of “fame”. I just wanted to geek out and have fun. I had no expectations for anything. And the same goes for this. They asked me because they thought it would be fun for me and not to get themselves further ahead. Now, the results may end up being something quite different.

Oh, and they’ll be interviewing me for something. It will be quite unlike anything I’ve ever done before or they’ve done before. There will be some things that are quite familiar (like geeking out over things) but… well… you’ll just have to wait and see.

I think that is it for the things that are secret but not really which I feel are safe to share.

Sooper Sekrit Things

I’ll try to keep this short and sweet. (I realize I am now over 1600 words. I thought this was going to be a short blog when I started. Go figure.)

1) I wrote a review a little while ago. (Sorry, I can’t tell you what review I’m speaking to, otherwise it may totally blow the secret). I was asked my permission for it to be used for something that really is beyond amazing and feature it in a way that… well… to put it plainly… I was so very humbled and touched that they want to use it and for this purpose. I responded to the email with, “Quote whatever you want”, but what I really wanted to say was, “FUCK YES!” And tears formed in my eyes, my soul was touched and I was deeply humbled.

2, 3, 4) The Lupus Awareness Virtual Art Gallery is going to get some really nice press. I emailed some place asking if they’d feature the October project in their next issue. They said they would be more than happy to. They said they were very happy I contacted them. They had read my review of Love Simple and listened to my interview with Patrizia Hernandez and are very happy that I made contact with them. This led to them asking me if I wouldn’t mind writing for their magazine. (Before you ask, as I stated above… the answer is no.) SQUEE! Of course! Be able to write about Lupus to a more focused audience… I’d be crazy to say no. Then this subsequently led to my book also being featured.

(Seeing as their are a number of Lupus related magazines and such, I feel it safe to disclose this much information. This is really completely awesome. I’m not sure if you can truly comprehend how much it means to me that my voice is one they want to hear and feel others will want to hear as well. In the next few days, after the press release goes out, I can say for what magazine.)

Oh man, there is more. There is so much more. But I think this is the extent of what I can safely share at this moment in time. Sure, none of it is paying monetarily but what it is paying in other ways more than compensates. And all of these things are building blocks. All of these have the potential to lead to bigger things. All of these allow me to use my various voices. And maybe, just maybe, next time someone asks me to write, it will be a paying job. Because we all know, I’m in desperate need at the moment.

Thanks once again for sharing with me my moments of squee.