Archive for October, 2010

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 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:

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.