Archive for February, 2011

Finding The Silver Lining

February 24th, 2011

In the last 8 or so days, I’ve been hit with a serious blows to my psyche. It has come to my attention that four fellow lupus warriors have died due to the complications of lupus. The most recent of whom passed away today. Not only did she have lupus, but she also had my other primary condition, antiphospholipid syndrome. I haven’t been this upset over a death since learning that a fellow lupie took her own life last September.

Despite better treatments for lupus, lupus is still potentially fatal. Because I’m well aware of this fact and am not afraid to face it head on, as a general rule, when I hear that its complications have taken another life, I’m not terribly bothered even if I am a little bit upset over it. But when it is 4 deaths in a very short period of time or a suicide, remaining rational is a lot of work.

Those who are familiar with my story know that overall, I remain very positive regarding my illness. I have kicked its ass more times than I care to count. Once in awhile I have to retreat from a battle in order to survive the entire war. This disease has resulted in me requiring a hysterectomy when I was 29, having over 12 TIAs (first one when I was 19) and one full-blown CVA (stroke) at 30. I think it is fair to say that I am a fighter, even if it causes me to rant every now and then. The day I stop ranting is the day I have no fight left in me.

My brain is currently doing all that it can to fight through this next dark patch in what is just another dark period one has to walk through. Regardless of what we go through in our lives, regardless if you live with a chronic illness or not, we all have them.

When reality decides to slap you HARD, I think it is even more imperative that you fight, even when it is through tears and wanting to scream ENOUGH! I also think it is time to try and find the good in the very dark, while still remaining realistic to the situation. Doing so is what got me through relearning how to walk and talk and eat and dress and bathe, even if it is was simple as reminding myself, “Today my toe moved for the first time in a month. I am making progress” and trying my best to not focus on the fact the rest of one side of my body was still immobile. For me, surviving this mentally is so very much about the small things. It is also about venting the really shitastic things so that they don’t get bottled up and gnaw away at me, until the load becomes way too much and I collapse under it.

Right now, I am thankful for the people who have reached out and offered me real, tangible, support. Right now, I am thankful for a wonderful staff. I am thankful for a staff member who asked if he could write an article for me because my brain is just too tired. I am thankful for a staff who steps in when I have reached my limit. I am thankful for a staff who does not tell me to cheer up while I’m a hot sick mess of tears and think I am mental. I am thankful for a staff who I can say to them very bluntly that they’ve screwed up and they know it isn’t personal. I may vent now and then about my staff. At times, I may have to hold their hands more than I would like to. But I am thankful that when I have reached that point of “no more”, I can simply state it and they know it must be something major. I am thankful for a staff who, except for a couple exceptions, may not “get” it but they try and they care.

I am thankful to all those who sent me silly and stupid jokes today and helped me to laugh through my tears.

I am thankful for a significant other who let’s me go off on them from, what may appear as, out of no where and just instinctively knows I have reasons, I’m just unable to articulate them as I normally can and that when I am ready, I will. I am thankful for a significant other who may want to tell me to sod off but just lets me have my moment, knowing that it will quickly pass. I am thankful for a significant other who always knows what I need to hear and doesn’t tell me what he thinks I want to hear. I am thankful for a significant other who offers to take the load off before I become overburdened.

Yes, I am still beyond frustrated at the moment. I am a millisecond away from telling the world to bugger off. But I am thankful that I can express these things and more people than not try to understand. I am thankful that I have a way to shed some of my burden and that there are a handful of people out there willing to pick up the load.

I know there will be some who read this who will want to send me their prayers and/or well wishes. I ask that you save those. Not because the well wishes are not appreciated. I know I have many supporters who just want to see me get through yet another battle with the crap lupus likes to through out. But if you really want to help in a way that is tangible, then educate yourself.

Whenever I talk about my lupus with someone new, often I hear, “I know someone with lupus” but they still do not know exactly what lupus is or what it can do. If you’ve tried to navigate the web and just can’t understand it, then ask me questions. They answers may not be sunshine and roses, and can be quite depressing but ask. If I can’t type out the answers because my brain is toaster, I’ll record the answers and make the audio available.

You can also donate to your local lupus organisation. There are so many mysteries surrounding this disease and it desperately needs money for research and treatment. I would really like to see a day where they can give a prognosis like they can with cancer, instead of having to make guesses all the time.

Be proactive. Sure prayer and well wishes can make people feel warm and fuzzy. Sure feeling warm and fuzzy and trying to remain positive can help in the healing process but it isn’t going to find a cure. Education and money is.

I was hoping that my next blog entry was going to be something full of joy. Things haven’t exactly been cheery in this corner of my internet world.

I will try to leave it on a positive note.

Sincerely, thank you to every single one of you who is helping to carry my burden. Thank you to every single one of you who has let me vent and cry so that I can move on in the next  step of my plan of action to resolve this situation. Thank you to every one of you who has taken even 5 minutes to educate yourself regarding lupus. I may generally rant from time to time because at times I feel people are not doing enough. That does not mean I do not appreciate it any less. It just means I have moments of being human.

I will get through this. I don’t know when but I know I will. And yes, I am taking some time to myself. I have informed the general population, meaning my staff ,that I am not to be bothered for any reason until March 1. I know when I’ve reached my limit.

Honestly, guys. I know I’ve said it before but I will say it again, I do not think my mental well being would be nearly as intact as it is, if it were not for you reaching me via code and fiber optics. I am very fortunate to have so many people, most of whom I’ve never met in real life, who genuinely care and are supportive. And knowing that is my silver lining.

PS: If I do not respond individually to people over the next few days, it isn’t because I’m not appreciative. I’m just needing some extra me time and am currently in my cave, tending to my wounds.

My Grandmother: November 27, 1919 – February 14, 1993

February 14th, 2011

In the early hours of February 14, 1993, my grandma peacefully passed away in her sleep. The events surrounding her death still deeply bother me to this day. I miss her terribly. As of this year, she has been gone for more years than I had her in my life. You’d think this day would get easier for me after all these years, but it just gets more difficult.

I used to recall every thing about her with the greatest of ease. Now, I have trouble recalling her voice or the way she smells. And when I do recall her voice, it isn’t the happy memories but the memories of her gasping for breath when she walked and saying, “Oh bother.”

Today, I managed to successfully bury myself in a mountain of work and stave off the tears… until two minutes ago when I watched the following video of Makeshift Innocence‘s latest single:

My grandma was the one who taught me how to love and be a giving person. She is largely responsible for my moral compass. My grandma is the one who taught me that I was loved. She showed me that I mattered, regardless of how others treated me. She taught me how to be a proper lady and live with dignity. (Yes, I can be a lady). My grandma was the matriarch of the family and when she passed on, what was left of the family completely splintered apart.

I really miss having toast with marmalade with her in the morning, afternoon tea with her, warmed apple juice with her in the evening, crafting with her for hours and crawling into her adjustable bed and listening to stories. I miss wearing her gawdy jewelry. I miss going to  the washroom in the middle of the night and seeing her dentures soaking in a cup of water and Polident, by the sink.

I miss being unconditionally loved by a mum.

I just miss her.

My grandma was the epitome of a proper lady. However, she was not without a sense of humour and the ability to “let her hair down” when in private company. The following poem was my grandma’s favourite poem and read at her Celebration of Life. The poem characterises part of my grandma quite well.

Warning – When I Am an Old Woman I Shall Wear Purple
By Jenny Joseph

When I am an old woman, I shall wear purple
with a red hat that doesn’t go, and doesn’t suit me.
And I shall spend my pension on brandy and summer gloves
and satin candles, and say we’ve no money for butter.
I shall sit down on the pavement when I am tired
and gobble up samples in shops and press alarm bells
and run my stick along the public railings
and make up for the sobriety of my youth.
I shall go out in my slippers in the rain
and pick the flowers in other people’s gardens
and learn to spit.

You can wear terrible shirts and grow more fat
and eat three pounds of sausages at a go
or only bread and pickles for a week
and hoard pens and pencils and beer nuts and things in boxes.

But now we must have clothes that keep us dry
and pay our rent and not swear in the street
and set a good example for the children.
We must have friends to dinner and read the papers.
But maybe I ought to practice a little now?
So people who know me are not too shocked and surprised
When suddenly I am old, and start to wear purple.

Being Attacked From Within

February 13th, 2011

If you “live” in any capacity on the internet, you’ve probably run into “trolls”. For the sake of clarity, I am referring to those who appear to be going out of their way to be mean and rude online. There are those who vigilantly monitor certain bloggers, waiting for an opportunity to comment and say some pretty dick things. When one does any form of online interactions, these things are expected and one has to grow a thick skin if they are going to survive the nasty that the internet can be from time to time.

As of late, I have been running into these situations with greater frequency. Not only have I been hounded by woo “practitioners” and “doctors” on Twitter anytime I mention Lupus, I’ve received what could be perceived as death threats for my pro-vaccine work and association with atheists and skeptics (this is quite peculiar) but most recently, I’ve been receiving emails from these quacks trying to sell me their snakeoil. There are days where I feel like I’ve slipped through the rabbit hole and I have to make a very conscious effort to breathe and not let it bother me or detract me from doing the various things that I do online. I was well aware these things occur. I just never imagined I’d be in any position where I’d be trolled on what has now become at least once a day. Yes, I know there are others who get it worse. Point is, I always thought I would fly under the radar as so many do. I’m probably very naive.

It takes me very little effort to shake off the above incidences, after the initial “WTF BUTTERCUP!” sends my brain into a tizzy. But what happens when these trolls are those within your own community? In the most recent situation that has me really bothered, it is within the Lupus community. An anonymous troll, who’s goals are opposite than your own, is very easy to laugh at. Especially because they lack balls. But when these attacks and/or pieces of misinformation come from within what is normally a very tight circle, it becomes very disheartening and takes a lot more contemplation to figure out how to address the situation.

The other day, I received an email from a fellow lupus warrior who was quite upset over a blog post. Apparently, this blog post is causing quite the stir in a lot of online lupus support communities because our struggles have been shat on. (Click the clip to the left to read the blog in question).

I was asked if I wouldn’t mind weighing in and giving my point of view on what was said in this post.

First, I’ll start by posting a video of the talk that is being attacked. Some of you may have already seen this talk as I’ve tweeted about it, have posted it on Facebook and it gets shared quite often amongst fellow lupies.

When I shared this video, I said something to the effect of, “Pretty good video explaining a bit of how I tackle my day with lupus.”

Notice, I used the words “explaining a bit” and “pretty good”, meaning the video doesn’t exactly describe my own struggles and there are a few things that I have some issue with. That being said, the video still has merit. In fact, there are a lot of people who think this video is great, as it articulates their struggles quite accurately and in a simplistic fashion. Because of these reasons and because no two lupus patients are the same, it is a video I’d recommend. It helps to bring a wider understanding to this disease and what it means for some people who have to live with it.

Lupus is different for every one. I do not think I can stress this point enough. Some people only experience minor annoyances because of it, some people lose all ability to walk, talk, have to have organs removed, need weekly chemo therapy, have strokes and heart attacks, and the list goes on.

I think one of the parts I found most offensive about the above blog is the following (there are a lot more venomous comments):

Christine hands her friend the spoons, and tells her that the spoons are basically her health/wellness, and asks her friend to talk her through a typical day in her life. She then starts taking spoons away from her for every tiny task she does, saying things akin to ‘you can’t just get out of bed, you idiot. People with Lupus need to haul themselves up on a pulley system’.

By the way she’s illustrating the severity of even the simplest tasks I’m thinking to myself, “biotch you need to take better care of yourself if the consequence for brushing your teeth too hard is a day in bed”.

What she wrote completely negates what is a very real situation for a good number of those who live with lupus. Just because this writer was lucky enough to not ever have to experience relearning how to walk, talk, dress, eat, get on and off the crapper, shower; does not mean these things cannot and do not happen. For a good number of people, that is their reality. For a good number of people, they spend a good part of their day trying to muster all of their strength just to stay awake, never mind be productive. For the most part, I take damn good care of myself and regardless, I have many days where it takes me at least 2 hours to drag my sorry ass out of bed, because that is just how bad my lupus is.

For those who’ve had to fight the really dark sides of lupus, they need to know that is safe to be honest about these things and talk about it. Not only for their own sanity but in order to raise awareness. Just because you can acknowledge the shittastic that is lupus does not mean you are dwelling on it or that it is consuming you. It means you are being real about your situation and have the strength to face things head-on instead of trying to run and hide from the truth. It does not mean you cannot see the light in the dark. I think I can be a good example of that. After all, lupus has tried to kick my ass from many possible angles and I continue to do some pretty amazing things despite my daily struggles. I can be honest about it and I know it allows others to feel safe in facing and fighting their own lupus demons.

I may not agree with a number of things Christine has said, either in this video or on the website that she runs. That does not mean her experiences are not valid and real. It just means we have different experiences and deal with things differently. My personal opinions also do not invalidate the community of lupus patience who do find comfort in Christine’s video and writings, because that is also their reality. And when you live with something like lupus, any amount of finding a community of those who you can relate with does wonders to help you cope and get through your day to day.

Bottom line, this video is a good tool to illustrate one of the thousands of faces of lupus. And I’m very disheartened that one of our own (wow, doesn’t that sound snobbish and elitist) has attacked in such a fashion that will undo a lot of awareness for this disease. I’m worried that it may leave some thinking, yet again, lupus is not that bad and people who bitch about it, are hypochondriacs.

Way to shit upon people’s real experiences and their reality, Diana.

Warning: May Be Prone To Irrational Outbursts of Tristesse and Tears

February 12th, 2011

Typically, during the upcoming week, I have random bought of tears and just wanting to tell the world to bugger off.

This year, it began a week earlier than normal and much more frequently than normal.

On the 14th of February is the anniversary of my grandma’s death. I’ll have more to say about that on that day. On the 17th of February, is the anniversary of when I had my hysterectomy.

I have been trying to figure out why this year has been much more difficult for me to deal with. After all, as of this year, my grandma has been gone for more years than I had her in my life. But I am having a more difficult time this year recalling the things that once gave me comfort when I thought about her, such as the sound of her voice and her smell. I feel as if her memory is going to be lost forever. And for some odd reason, it is really bothering me. Maybe by Monday, I’ll be able to talk about this more. Right now, I end up in uncontrollable tears every time I try and remember those sensory memories, only to find they have decayed to an almost non-existent level. If you are new these parts, you may not understand why, when growing up, she was the most important person in my life.

And as for the hysterectomy, well that is just a suckass thing to have to go through when one is 29 and the doctors are FINALLY starting to put your lupus diagnosis together, after over a decade of various diagnoses.

I hate making excuses for not good behaviour. But I just want to let as many people know at once, that I am far from myself and that this year, the emotional baggage and wounds have been ripped open earlier than usual. All that I ask is that you are patient with me and if I appear antisocial, it is because I’m going through some stuff that I hope, this year, I can finally deal with once and for all, getting some form of closure on these events.

I should probably talk about these things (with an actual voice instead of type) but it is difficult to talk when you are crying. At least for me it is. There are very few people (read 1 or 2) who I feel comfortable crying in front of and around. I’m more of the “cry in private” type.

Hopefully with more quiet contemplation, I’ll be able to purge things once and for all.

All this being said, I find it quite fascinating the things that haunt us as humans. I’ve gone through a lot of crap in my life and have always bounced back from it with grace and ease. I’ve had many people die. I’ve had lupus do some pretty fucked up things to my body. And yet, I have yet to recover from these two events. It would be wonderful if I could figure out the cause so that I can finally deal with it.

If I seem off, it is because I am. I’m not asking that you understand, especially as I do not understand it myself. However, patience would be awesometastic.