Archive for September, 2010

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…

More Mind Exploding Talent From Kid2

September 24th, 2010

I’m going to keep this short and sweet. Kid2 finished writing this yesterday. And remember folks, he is 11. I can’t wait for this to finally have some music behind it. If you haven’t heard his other partial song, check out this post.

So Crazy


Intro:

When the dragon squeals the secret is revealed
And tells me the story on why every body heals
And why every body gets a second chance
Except me and shuts me in the dark
In a closet of skeletons that scared me

Verse 1:

When I was just a boy
When I would just play with my toys
When I go to sleep my closet
Would make so much noise
And you think it is cool to trap me here
Face to face with all my sins
That are cased up in a ton of bins

Chorus:

My life’s so crazy
But I can’t seem to shake the fact that
I’m just so crazy
And I won’t live to see the world end
My life is over
And I can’t take any more of this torture
That you have brought upon me
Why oh why

Verse 2:

This is how I do it this is how I survive
The torture of you and many I have hidden
And taken away so that no one will ever face
The devil that I am and that I make people believe in
I am evil I am a vicious crazy lunatic
I am psychopathic I am more or less about it
That’s all about it I’m crazy

Chorus:

My life’s so crazy
But I can’t seem to shake the fact that
I’m just so crazy
And I won’t live to see the world end
My life is over
And I can’t take any more of this torture
That you have brought upon me
Why oh why

Verse 3:

That is my story this is the end
I say it once I don’t want to say it agian
I’m crazy but I stand in front of you all
Powerful after the danger I went through
It’s terrible I admit it now
I’m never going to again
I am a terrible man
With a terrible brain

Chorus:

My life’s so crazy
But I can’t seem to shake the fact that
I’m just so crazy
And I won’t live to see the world end
My life is over
And I can’t take any more of this torture
That you have brought upon me
Why oh why

In Which Kid2 BLOWS MY FRACKING MIND With Amazing Talent

September 22nd, 2010

I just came home from a short walk with kid2. I am not well and thought the walk, even so it really hurt, would be good for the both of us. We have some of the most amazing conversations while we are walking.

On this walk there were many hilarious moments, leading me to ask him, “Do you mind if I tweet this when we get home?” He responded, “Nope. I don’t mind at all. Then you can show the entire world how your brain fails in both hilarious and awesome ways.” One such moment of fail occurred when he was painting for me a picture, with very vivid details, of a book his class is currently reading. And then this moment:

Kid2: […] You know how there are islands off the coast of California? The island was inspired by one of those islands.

Me: Yes, I do know. Azkaban being one of those islands.

Kid2: Really? She named the prison in Harry Potter after one of those islands?

Me (bewildered): Wait. No. I meant to say Alcatraz .

Kid2: Didn’t that use to be a prison for the worst criminals?

Me: Yes.

Kid2: Well then I guess I can understand how you mixed the two up.

Throughout the walk, he kept making me laugh and telling me the most amazing stories. And the way he was telling the stories was actually a work of art and so very entertaining. In case you don’t know, when kid2 grows up, one of the many things he wants to be is a writer. He has been using his writing voice more and more while he speaks. It really is art in motion. I had told him that I need to start bringing my digital audio recorder with me when we go for walks because these conversations are just so fantabulous.

Kid2: No!

Me: Why not?

Kid2: Because you’ll post our convos on the internets and you do not have my permission for that.

Me: *sigh* Fine.

We continued our walk and that is when he blew me away even more! Aside from writing prose, he has been writing a number of songs recently. He was talking with me about his creative process and how he finds he gets his best ideas while he is alone in the morning, walking to school. How it is frustrating when noises from the outside world disrupt him when he is busy thinking and creating (this is when I said, “Now you know how I feel when you interrupt me while I’m writing and creating). And that is when it happened. He shared with me one of his unfinished raps.

This is not mother’s pride speaking when I say it is brilliant! And keep in mind, he is only 11. If he is coming up with this type of lyric at 11, he has a very amazing future ahead of him (he just finished telling me that one day I’ll be interviewing him). With a little bit of “AWWWWW PLEASE! Don’t make me beg.. PLEASE”, I was able to convince him to record this piece of awesome and let me share it with you all.

The Boy – By Kid2

Hey I’m not Dre
I’m not Slim Shady
I’m a boy who can rap
Rap stuff you can’t
Rap stuff that can run you over
As fast as you can puff

Puff the stuff your mom does
The stuff that gets you high
The stuff that lies
You know the stuff that dies
When you smoke it
It goes to your heart and strokes it
Pokes it then you’ll die

Die like how Freddy Krueger died
By Eminem, 50 cent, Dr Dre
And now I
I bye liddidy diddy die
If you don’t shut up
I might cry
Then beat your head with an extra 5

By 5 I mean an extra fist
That will come and strike your dick
Oops did I say that in a song
No no don’t take me to jail
I know I failed
Failed like Luke Skywalker ’cause
He turned to the dark side
And Leia killed him
Took him and shot him with his own gun
What a bum

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.

A Year In History

September 17th, 2010

One year ago today, I received an email that would forever change my life. At the time, I had no idea this would be the case. If present me had gone back to tell one year ago me how things would have played out, I would have told present me that I’m a daft loon and off my rocker.

He kept emailing me and tweeting me and asking me to check out this or that and “begged” me to follow him back on Twitter. Now, I lovingly like to say this person harangued me with his wonderful tenacity. However, to be quite honest, the “haranguing” was very mutual. What would have normally been one email turned into many conversations over the course of months. There was a lot of flirting back and forth. At first, I just chalked it up to two very flirty people (who could win gold medals if it were an Olympic sport) doing one of the things they do best. And then something changed. The relationship changed from that of a “fan” and “personality” into a close and trust friendship, which later morphed into a romantic relationship.

One year ago, if someone were to have told me that someone would enter my life and have an impact to the degree where I could not image my life without them, I would have laughed my fool head off. I do not form such attachments with people. Yes, I do have a few very close friends. But I grew up with a lot of change in my life and quickly learned that people come and go, so no point getting tied up in someone. Also, my emotions do not quite work like they do with normals. The way I go about forming attachments is quite different. As I’ve said before, doesn’t mean I do not care. I care deeply. I’m just a logic driven person who has the mindset where only things that matter at the end of the day are worth attaching very strong emotions to. Aside from my children, I never thought anyone would matter that much at the end of the day.

One year ago today, if someone were to have told me that I would be in love, there would have been an epic debate over how the concept “in love” is a fallacy. It is a term people use to make themselves feel better. True love is not something you fall in and out of. Lust is. True love, once you love someone, it never stops. And I suppose this is why I still have issues saying I’m “in love”. I think what I’ve found is better. I have True Love.

Six months ago, when the labels changed from really close friends, I will admit I was a little hesitant. My idea of the ideal relationship was one where the other person would be my best friend first. One where both parties would put any feelings they may have aside and actually talk with and be there for the other person. I can do this with great ease. It isn’t until I’ve had time to think about a situation before I feel anything about it. I realize this is not true for a good portion of people.

Because of this, 99% of my romantic relationship have evolved from good, solid, close friendships. However, as soon as the label was changed, they would get weird. I could no longer talk to them the same way as before without their feelings getting hurt. They had expected me to change and I couldn’t understand why they entered into the relationship, knowing full well who I am, if this was an issue for them. The relationships would mutually end with no hard feelings and revert back to friendship. I was worried that this may happen again. I was worried that it was yet another person who claimed to accept me 100% for who I am but was still looking at me with rose-tinted glasses.  I was afraid it was another person claiming to be in love with me but, in reality, was in love with the idea of me. I was worried that because he is very much human and I am very much Data or Spock, feeling would get hurt. However, I still said yes because life is all about taking chances. I had nothing to lose and everything to gain. Best decision ever.

In the last year, our lives have not been any where near “okay.” Both of us has had a lot of upheaval. Both of us have experienced some pretty big life changes in a negative directions.  Yes, we have had a lot of awesome and win as well, however our relationship has been a trial by fire. We have experience more than our fair share of things that will either make or break a relationship. And as suck ass as part of the past year has been, it has been bearable because we endure it together.

In the last year, we have laughed together, we have cried together, we have shared together, we have kept our secrets together, we have gone toe-to-toe together, we have worked together, we have played together, we have feared together, we have loved together and we have built a life together. One of the things I enjoy the most about this relationship (and have from the very first moment of coming into each other’s life) is the going toe-to-toe together. And he has noticed things about me and has asked me questions about them, that nobody has ever taken the time to notice or ask about before.

We are both very strong-minded, strong-willed and very passionate people. When we have an opinion on something, a real opinion, it is a very strong one. Overall, we agree. But the odd time that we do disagree, we have never been afraid to be brutally honest with each other, share and respectfully disagree. I am so glad this never changed. At times, I find it humourous when those who know about this relationship see us going toe-to-toe now, think there is a problem between us. Somehow, they forget this is how we have always been together. Why should that change just because the label changed? It is one of the things that make this relationship actually work. We always know where we stand with each other. We always know exactly what the other person thinks or feels about anything we have said, done or created. Other times, I find it down right annoying and intrusive that people forget this has been and always will be our dynamic.

Despite the fact we are each going through our own different trials at the moment, (separately we are not fine), together we are hunky dory. In my observances of other people and due to past experiences, I have come to the conclusion that people change who they are and how they talk to their partners in times of stress. This really baffles me. I am off the mind that is when you should be talking to your partner the most and be the most honest.

I love the fact, that even so we are troubled individually and despite fears left as wounds from other people, our trust in each other is still there. We are still completely honest with each other. We still trust each other even if we are fearful to lose the other person.  We can acknowledge that our fear has nothing to do with what is currently going on. We understand any fear is not the result of the other person. We can openly discuss these fears and we “get” each other because of these fears. We still accept each other for exactly who we are and wouldn’t want to change it for the world. We would still go to the ends of the earth for the other person if that is what it takes.

In the last year, we have grown together. We have both learned more about ourselves. Sometimes, I think I have learned more about myself. Or maybe, it is just that for the first time in my life, I have a romantic interest who accepts my flaws, my feelings, my fear, my strengths, my quirks, my stubbornness, the peculiar way my brain works and myriad of other things. For the first time in my life, I have someone who sees me exactly for who I am and honestly wants to have that in their life beyond “friendship.” I have someone in my life that allows me to wear my thousands of hats and equally, loves and accepts them.

Our relationship has been largely a secret. Not because we are ashamed of it. But because it really is complicated in the true sense of the word. One year ago, I thought using “complicated relationship” as your status on Facebook was totally stupid. Either you are in one or you are not. How complicated can it be? Then this relationship happened. Our secret was suppose to become completely public in June but then life decided to throw us yet another curve ball. In June, our first major major step to the “forever and always” plan we had negotiated during our talk about what we want from this relationship and how we are going to navigate it, had to be postponed.

I am a person of planning. I am one of these people who needs to know. When we first sat down to negotiate our relationship, I foolishly said something along the lines of, “I don’t want this to be a causal thing. I don’t do casual. If we do this, we are going to plan for the long term. So I need to know when certain crucial steps will be taken because I can’t wait around forever.” Reading this, I am laughing my ass off because it really is a total contradiction. When I said forever and when he said forever, we didn’t mean “as long as things are easy.”

We made a plan. It didn’t work out how we wanted it to because life had other ideas, not because it isn’t what we wanted. The important part of that plan was forever and always. Forever and always requires a tonne-load of work. However, if the last few months have been any indication, we are more than up for the challenge, whether it takes 6 months or 1 year or forever. Because after all, forever is the goal.

We have kept this relationship largely secret because a lot of people will not understand. A lot of people will make judgments, especially as both of our lives are somewhat public. At first, I didn’t like this idea (our relationship being public) because our relationship is sacred. We are the ones who are living it and know what is going on. To borrow a line from a song, “We’re the ones who are out here/ Out past the edge of what they know/ We can only be who we are/ It doesn’t matter if they don’t understand.” I’m normally the type who does not care what people think. That does change when it comes to things I hold dearly. But on the other hand, I’m tired of hiding something that truly is amazing.

I don’t believe in fairy tales. Well to clarify, I do not believe in the Disney version of fairy tales. But I do believe in True Love. I’m tired of hiding something that has made my life so much better. Our relationship is so much “The Princess Bride“. He is my Wesley and I’m his Princess Buttercup. There is nothing we would not do for each other.

Those who actually know me are probably thinking, “Wow. Is this really Jules talking? She is not this type at all. She is pragmatic and realistic and not traditionally romantic. This must be one special relationship.” Well, it is. The guy sent me an external hard drive as flowers! He wanted to send real flowers because he is that type. I am not. He put aside his idea of romance and used my idea of romance. He also serenaded me in front of the world, among a myriad of other awesome things. That is special!

Joe, thank you for always believing in me, especially when I do not believe in myself. Thank you for being my Alfred. Thank you for your patience, caring, love and compassion. I hope I have shown you even a small fraction of what you have shown me in the past year. You are the most chivalrous, emotional, caring, loving and romantic man on the face of this planet, who wears his heart on his sleeve. I, on the other hand, am quite inept when it comes to emotions and showing outwardly what I am feeling on the inside, who likes to keep these things private. The fact you not only tolerate who I am, but actually love who I am, astounds me. I am a better person for knowing you and having you in my life. I hope the rest of our years are amazing as our first year has been (with less curve balls thrown our way). I will remain forever and always yours.

Intelligent But Hilarious Children And Critical Thinking

September 14th, 2010

Today has been one of those day where the slightest thing has tried my patience. A normally even-tempered Jules had to avoid much of the internet today. Things that normally would cause me to say, OH FOR FUCK’S SAKE!”, had me yelling, “OH FOR FUCK OFF!” to my monitor. This is not good. So I spent a lot of my day avoiding blogs, which I normally love to read, and avoiding reading my Facebook news feed. I was in such a mood that I would have not felt any remorse at all when I inevitably stopped biting my tongue, so to speak, and lashed out.

In an attempt to calm the raging monster lurking inside of me, waiting for a moment to devour the first of many unsuspecting but deserving victims, I decided to listen to the one time that I was interviewed. Kid2 decided to join me for the last few minutes of the interview. And am I ever glad that he did. The conversations that occurred as a result managed to not only calm this savage beast but also subdue it into fits of roaring laughter.

Near the end of this interview, I was asked who I liked better, Wil Wheaton or Phil Plait. He came in just to hear the end of the conversation, where I say, “That is like asking me who I like better, Kirk or Picard” and some banter on that subject. Kid2 asked me, “Did Joe just ask you who you like better, Kirk or Picard?” I replied, “No. He asked who I like better, Wil or Phil.” His eyes became wide as saucers as he said, “OUCH! That is even more difficult to choose between! How could he ask you to choose?!” I howled and said, “You’re awesome! Yes, it is a more difficult choice.”

He sat with me for the remaining 10 minutes of the interview. We laughed together over the ridiculousness of it and other things; such as having Joe and Sammy team up on me being just as bad as if it were him and a myriad of other people, who are very good at teasing me, team up on me. Once it was done, I told him it was time for his shower.  Still laughing, he went to the shower and I checked Twitter. That is when I saw the following tweet from my friend Travis, “Just saw a good-looking woman I’ve never heard of accepting some kind of important Republican nomination on CNN. Most unpleasant deja vu.”

I HOWLED! I giggled and snorted for a good few minutes. I was still giggling when Kid2 got out of the shower. He asked me if I was still laughing from our discussion prior to his shower. I said, “No. I’m laughing at something a friend said on Twitter.” He asked me to tell him what it was. I told him he wouldn’t understand. He gave me that puppy dog look, which only children can give their parents, so I told him what it said.

Wanting to be part of the conversation, he laughed. I smiled at him and said, “You don’t get it, do you?” He shook his head, “No.” So, that is when I explained to him that it was a reference to Sarah Palin. He cocked his head and said, “That name sounds familiar, but I don’t know who she is.” I then explained to him that she was a candidate for the Vice President of the USA, she is pretty but she is not that smart. She believes that the earth is 6000 years old and that she can see Russia from her house in Alaska, among other things.

The look on his face and the ensuing conversation was priceless!

Kid2: Wait a minute. She thinks she can see Russia from her house?

Me: Well, that is what she said.

Kid2: Okay, well… that seems a little ridiculous to me. But what I have more issue with is, SHE THINKS THE WORLD IS 6000 YEARS OLD! REALLY? Has she ever heard of Science, mom?!?”

I smiled and said, “About 50% of Americans are what is known as “Young Earth Creationists”. Meaning, they believe that the Bible is literal, therefor the Earth is only 6000 years old and people and dinosaurs inhabited the planet together.

Kid2: Seriously?!? Again, have they not heard of Science??? Do they not go to school? How can they believe this?

It was then he gave me a demonstration of the history of the Universe using his arms. He held his arms as wide apart as they could go, told me to imagine this was the entire time line of the Universe and then showed me the minuscule portion of when the Earth formed, the even smaller portion of when dinosaurs inhabited the planet and the yet even smaller portion of human existence.

Kid2: It’s more complicated than that, mom. But that is basically it. That is SCIENCE! How can they rationally believe anything else?

Me: I didn’t say it was rational. I said that is what Young Earth Creationists believe. They believe that people rode dinosaurs, etc.

Kid2: Honestly!? You mean to tell me, what? That they think the time that the earth was all molten rock and stuff… and what about the ice ages, mom?!? What about those? So they think the earth being a molten lava pit and the ice ages, happened in like what? Minutes from each other?!?

Me: Pretty much. Well, you see, love. They have their own “scientists” who, with their own “science”, “prove” Science wrong.

Kid2: Well, isn’t that just stupid! That isn’t how you do Science! They are purposely going to find the answers they are looking for! That isn’t how it’s done! It’s like…  ummm… okay… as an example, if I go out searching for proof that God doesn’t exist, of course I’m going to find proof to suit my own beliefs because I’ve made my mind up on what the answer is. The same is if I go search for proof that God does exist! Of course I’m going to find “proof”. That isn’t finding answers or proof! That’s just trying to find things to support the ideas you already have! That isn’t how you are suppose to do it! And they call that science?!?

Me: Yes, hun. And you are exactly right. When you have an idea about something, you are not suppose to make up your mind first regarding the results but just test your theory and go from there. You gather the data, apply the math and let it give you the answers, not the other way around.

Kid2: I still can’t believe in this day and age people still think the Earth is only 6000 years old! That is just insane!

And with that, he went to bed.

I smiled. I am still smiling. I have some of the best conversations with my children. It makes me happy that I’m teaching them how to think critically and be skeptical about the world around them. I worry sometimes because Kid2 will see something on YouTube or elsewhere (2012 being a big one lately) and we have to have long discussions about the faulty science behind it. But then he will have a rant of Jules Epic Proportions or we will laugh and geek out about things together, and I can be content.

Aside from being able to laugh with my child tonight, chasing away the monster within, I had the opportunity to have a very good discussion about the world in which we live and the people we share it with. And to think, those comments came out of the mouth of an 11 year old child.

It is too bad that many adults still do not know how to apply such logic to the world around them.

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

Rainy Holidays And In Which Kid1 Builds Kid2 A Tree House

September 6th, 2010

Today is the last day of summer holidays. And of course it is raining (much needed rain). The last day to sit, relax and really enjoy my children before another crazy school year begins tomorrow morning. Two more days to enjoy having a 14 year-old before he turns into a 15 year-old. One day filled with soaking in all that is Kid2. You see, he has been away for the last 23 days. What was suppose to be 1 night with my sister, turned in 2 which turned into 5 which turned into, “I’m going to keep him until either I can’t afford to keep him anymore or I can’t handle him anymore.” (He isn’t a handful but he does talk A LOT.)

She then emailed me a few days ago, offering to keep him for a few more months. It was more of her telling me rather than offering. There are many reasons for this offer. I told her, as much as I appreciate her help recently (she was not always this helpful), I really need my baby home. I have missed him terribly and things are just not the same without his incessant chatter. Today he came back home, loaded with new clothes, school supplies, an xbox and xbox games, Star Trek Transporter toy (which caused me to squee), at least an inch taller, looking, sounding and smelling more like a man. (From Twitter: Kid2 is home. YAY! Kid2: Mom. I’m expecting a squee. Me: Why? Kid2: Come look. Me: *sees Star Trek transporter set* SQUEE! Kid2: tee hee)

When he had finished showing me all of the things he brought home (the transporter is SERIOUSLY AWESOME!), he finally gave me another huge, great big long, bear hug. He looked up at me and said, “You missed me, didn’t you?” I responded, “Boy, did I ever! I am so happy you are home.” He smiled and said, “I bet.” (Later he made comments about how I was probably happy to have the break as I needed it. I said, “Not really even so it was nice not to have the constant chatter all day long.” He laughed and said, “That is why I think it was a nice break for you. I really don’t know when to shut up.” I laughed and said, “Yeah… maybe. But I missed you more than not. Things are not the same when you are not around.”)

While he was away, Kid1 made him the best gift ever! He built him a tree house in the backyard forested area. Seriously, how many nearly 15 year-old boys spend days hauling material and building a tree house for their 11 year-old brother to come home to as special surprise? Not many. When Kid2 discovered the tree house, his reaction was, “OMG! OMG! THIS IS AWESOME! OMG! OMG! OMG! THIS IS SOOOOOOOOO AWESOME!!!!” My boys are seriously beyond amazing. They may argue like all siblings do, but over all they are rather fabulous together. Kid1 really takes the time for Kid2 (when he isn’t complaining about his annoying younger brother).

A couple weeks ago, I decided to take some video of his efforts shortly before kid1 installed the laminate flooring. Alas, you will now all find out the name of kid1 as I am too lazy to edit the video. The quality is shitty. I took it with my very ancient (4 year-old) camera. It is also rather shaky. But I think it rather cool. And you get a bit of a tour of what is my backyard.

How many kids get to have a tree house (built by their older brother nonetheless) in their backyard? Pretty groovy!

UPDATE: YouTube FUBAR’d the video. I tried to re-encode the video and YouTube still FUBAR’d it. So, here it is hosted on my server. Please be patient while it buffers.

Another Update: The video is out of sync again. Even so when I previewed it, it was fine. I don’t know why. Technology is deciding to hate me again. I may fix it over the next few days.

Yet Another Update: Okay, uploaded in original format. You’ll need to QuickTime plugin to view. When I viewed it, it was in sync. Hopefully it stays that way. Or you can click the link below to download the video. Once again, you will need to be patient while it buffers.

Kid1 builds Kid2 a Tree House