Archive for the ‘chronic illness’ category

Counting The Wrinkles And Picking Up The Pieces 5 Years Later

June 24th, 2011

Five years ago today, the unthinkable happened. I had a full-blown left-sided stroke.

It was a rather bizarre event. When the symptoms began, I was talking on the phone with a friend. My left foot had suddenly gone numb and heavy. My first thought was that I was sitting funny and it was just asleep. So in an attempt to wake it up, I changed position and tried to wriggle my toes, only to discover that I could not. Rapidly, the numbness started to spread. That is when I told my friend, “I have to go. I think I’m having a stroke.”

I can only imagine the look on the person’s face when they heard those words coming through the phone. They sputtered. The only response I can clearly remember was something about me being okay and the word stroke being echoed back. Not thinking, I repeated, “Gotta go. Having a stoke” and I hung up the phone and went to the emergency room.

What happened within the next hour was a rush of events as they tried to get a medical history from someone who could now no longer move any part of the left side of their body and had no feeling in it. I was half confused and half coherent. Time was ticking as they only had one hour to decide if it was a stroke or neuro issues as a result of my lupus. You have one hour to administer TPA if you have any hope of reversing the effects.

It felt as if days had passed but it was less than an hour before I was giving consent to one of the most dangerous procedures I had even underwent—having a hysterectomy the year before with only a sedative because of how many times I’ve been under a general anesthetic and subsequent allergy was nothing compared to the risks of TPA.

Consent was given. Loved ones were called. The TPA was administered. Then we waited to see if it would eventually do its job or would I bleed out.

The next week I spent in ICU, in isolation, undergoing more tests and the beginning of rehab. I was to stay in the hospital for months as I had to relearn how to hold objects, talk, walk, dress and bathe myself, wipe my own arse and the list goes on.

A couple days after my stroke, my body played a cruel joke on me. The physiotherapist asked me to move my toes. My brain told me that I did and I cheered, “Yes, I did it!” Grimly, the therapist looked at me and said, “No. Sorry. You didn’t.” I felt defeated.

I was 30-years-old. I had to be fed. I couldn’t pee without a tube. I couldn’t take a shit without someone putting me on a toilet and wiping my ass. I couldn’t walk, never mind crawl. It was bad enough that lupus took my uterus the year before. But I was 30 and needed to be cared for like I was an infant.

I was dehumanised.

It shouldn’t have been surprising that I had a stroke at 30. I had my first TIA (a mini-stroke) when I was 19. Up until that day, I had at least 10 TIA—could’ve been more but I stopped counting. Regardless of the history, who has a fucking stroke when they are 30?! Apparently, I do. But that is something that is difficult to accept.

I forced them to release me from the hospital 6 days after the stroke. I no longer needed to be in ICU. They didn’t have a medical bed available for me. I was only there to rehabilitate and I felt it was a waste of money as I could get the same care at home. Plus, I had promised to take my boys to see Superman that night—it was the opening night—and I’d never broken a promise to them. A pesky stroke wasn’t going to be the cause. They were already terrified that their mum was not going to leave the hospital alive. So, after much convincing and many meetings between the different doctors, they released me.

I fought with all I could to be well again. I also raged A LOT and many times, I just wanted to give up and stay in a wheelchair. It was just so bloody difficult. By September, I was mostly walking on my own. But that took me doing 4 hours of physio at home, every day, and 2 hours, twice a week, at the hospital.

Some are surprised that I’ve had a stroke. If I’m not tired or if one is only exposed to me in small bursts, they don’t see the longterm effects. My brain has problems with communication, especially type communication. I will think one thing but, many times, what greets the person reading my words is complete gibberish. Well, not gibberish per se. They are proper words. Sometimes, they are even proper sentences. But it isn’t even any where near close to what I was actually thinking.

At times, people ignorantly—not willfully ignorant, mind you—will comment on this. My first reaction is to want to yell, “I had a fucking stroke, okay?! Please forgive me if I’m not bright enough for you!” Instead, I just give myself the mental tongue-lashing, call myself a stupid twit and cry on the inside, plus mourn for the brilliant brain I once had. It isn’t until later that I remind myself what exactly it is that I have overcome and continually overcome just to be able to communicate. Considering that a lot of what I do involved typed communication, I overcome obstacles every moment of the day. But because these obstacles are invisible and I make it appear that I do things so effortless, most people don’t see the struggles and just think I’m stupid or incompetent or can’t string together a grammatically correct sentence; leaving me once again to want to scream, “I HAD A FUCKING STROKE!” But that seems a bit like victimisation to me and I’m a survivor, damn it!

It is also because of the above that when I am really exhausted and ill, I don’t do type communication, or at least, I scale it back to essentials only and don’t chat with friends. You may as well be asking me to sprint to the Sun and back. It require so much effort on my part to do so.

The only noticeable longterm effect is that when I am tired, the left side of my face will droop and my left side becomes a little bit weaker.

There are times, especially when I am ill, that I think, “Why do I bother even fighting?”

There is the obvious answer that I do it for my two sons. They are my reasons. They are why I get up in the morning and am thankful for taking a breath of air, even if those breaths feel as if my lungs are being ripped to shreds… such as days like today.

Despite the fact I have moments of rage and frustration, moments where I feel life is passing me by, there are some effects that I am thankful for. These effects of signs of aging.

People are constantly telling me that I look much younger than I am. They tell me that they can’t believe that I have a 12-year-old and a near 16-year-old. I find this frustrating. Yes, I know they mean it as a compliment. But you see, I am a fighter. And, I’M ALIVE!

Each line and wrinkle, each white hair that is FINALLY beginning to crop-up, each section of skin that is becoming discoloured with age has a story. They were earned. As ridiculous as this sounds, I feel cheated that I do not have more. Because, boy, do I have stories to tell. These stories deserve to have a voice. Every fine line around my eyes is there because someone made me smile. Every deep line in my forehead is there because someone or something made me think or feel something. The fine lines around my mouth are there because I can continue to speak, laugh and smile.

I’m getting older. Lupus has not prevented this yet. My lines and wrinkles deserve a chance to share all of the stories of who I am. They too deserve a life. Hopefully, they will get their chance to really shine and be celebrated for the triumphs they are.

If you were to really look at my face, you’ll notice that I barely have any lines on the right side. However, if you look at the left side, there are now, even if really small, permanent lines around my eyes and on my cheeks. The left side of my face tells the story of how I managed to survive a stroke and 5 years later, jump over the obstacles it continues to throw at me, whilst still attempting to pick up the pieces.

There are many days where I do not feel brilliant. If I didn’t have any recollection of how truly fabulous I once was, surviving this may be easier. But I do remember and I know that it didn’t always feel like I was attempting to run with mud up to my neck when thinking. It is hard not to feel dim.

But then I look at my lines and wrinkles, they tell me the stories of my struggles and survival and I celebrate.

Five years ago I had to start over. It has been far from easy. Every day is a battle. But anything worth anything is a lot of hard work. Isn’t being alive worth the effort?

Despite having days where I feel life is passing me by, deep down I know I am living it to the fullest. I am living a fuller life than a lot of people who don’t have such struggles. Yes, I’d like just one day were I didn’t have to fight and could just enjoy it.

But holy shit, I’m alive.

Happy anniversary.

Harry Potter and Lupus

June 23rd, 2011

Another too long for Twitter thought. I have loads of these. I think they are too short for blogs. They cause me to think for a terrible split second that I should create a Tumblr account but… yeah… no.

Anyway, here are some silly and dorkish Lupus induced thoughts. Please forgive them, I’m ill and very frustrated with my illness at the moment, as I feel life is passing me by as I have to pass up another encounter with loved ones.

Lupus can go suck big, blue, hairy, sweaty, monkey balls.

Lupus is the Dementor, lurking in the shadows, slowly sucking the life, joy and happiness out of your soul, replacing it with despair and depression, leaving you with barely enough inner strength to summon your Patronus. Thankfully, I have my own set of witches and wizards in my life, ready to summon their Patronuses for me; shielding me from my inner demons which have become external; giving me enough protection to regain my strength; allowing me to fight them off, before they lay their final kiss of death upon my lips.

Told you it was silly and dorkish. I should have added stupid as well, but I need these silly and stupid and magical and hopeful childish thoughts to keep me from falling apart.

Oh yeah… tomorrow is the 5 year anniversary of my stroke. That may be adding to my mood.

Happy Anniversary?

How I Survive Lupus (AKA My 12 Step Programme)

April 7th, 2011

Earlier this week, I was asked by one of my twitter followers (@robtclements) how do I cope with my lupus and the things it does to me. I tried my best to answer him via Twitter, but that isn’t always the best medium. I thought it would be a good idea to write about it great detail. If you are a long time reader of my blog, this will not be new information. However, I realise there are a lot of new people to this part of my world and, in cases such as these, it isn’t a bad idea to repeat it; not only to serve as a reminder to others, but also myself.

There are a few things that I do to get through it:

  1. If something is bothering me on an emotion level (fear, doubt, anger, frustration, etc.), I name it. Naming it allows my brain to make it tangible. It allows me face it head on. I believe you can’t fight something that you cannot, or are unwilling to name.
  2. I do not internalise by feelings. I get them out in the open, either through telling one person or blogging. For me, this is very necessary step in moving onto my plan of action to win whatever battle I am facing. Also, internalising it is never a good idea. I use to do that, isolating myself in the process and causing depression to set in. Some times (read a lot of the time) this is scary because I face rejection and all of my abandonment issues rear its ugly head. However, despite my fear of rejection, I open up about them because:
  3. There is no shame in admitting to fear, anger, despair, grief, frustration, doubt, etc. Admitting to it, especially openly, take a huge amount of courage. It means you are willing to stand up face whatever it is, even if you are shaking in your trousers while doing so.
  4. I remind myself that raging openly about the fear, anger, despair, grief, frustration and doubt means that I am still alive and am fighting. The day I stop being angry, afraid, grieving, frustrated, doubtful means that I’ve given up and am probably extremely depressed.
  5. If I fall down, metaphorically and literally, I pick myself up and try again. I do this as many times as necessary, each time going through steps 1 -4.
  6. I try my best to focus on all the positive things that are currently going on (no matter how small or trivial it may seem) and, in the process, reminding myself why I am fighting. I remain thankful for all the wonderful things I get to do despite lupus trying to kick my butt. Sometimes this can be quite difficult as living with lupus can get pretty bleak. I also remind myself that people are fighting with me and doing their best to carry me when I cannot carry myself. I am not alone, either in this battle or in the way I am feeling.
  7. I breathe.
  8. I erect strict mental boundaries as I’m someone who needs a lot of space and room to contemplate. I am a cave dweller by nature. Sharing does not come easy to me. I can share once and only once. It is one of the reasons I blog, so that I don’t have to repeat the same story over and over. Doing so causes me to become even more angry and frustrated and I find it very emotionally and mentally fatiguing.
  9. I find humour in the silliest and most morbid of places and laugh, even if it is through tears.
  10. I remind myself that, even though I share a lot of qualities with Spock or Data, I am only human.
  11. I remind myself that sometimes you need to crawl before you can walk.
  12. I think most importantly, I deal with lupus like someone would deals with an addiction: day by day. Sometimes the day by day is very difficult because so much can be thrown at you in a 24 hour period. That is when I take it moment by moment. I remind myself, “You survived this moment. You can survive the next.” That does not mean that I am not crying or raging in the process.

For those of you who are new to this part of my world and want to learn more, I invite you to read and download this plus read this and listen to this.

And once again, I’d like to thank every one for all they’ve done to support me over the last little while. It is appreciate more than I could ever articulate.

Literally Losing My Brain

April 3rd, 2011

I’m going to preface this blog by letting you all know that I’m scared and worried right now. Today, I was slapped, yet again, with some Lupus reality. And now I fear I am going truly senile instead of just the normal lupus brain fog and cognitive issues which were compounded when I had my stroke.

I’m on antibiotics right now. I’m extremely careful when reading medication labels. Misreading medication labels is a huge cause of a word that is escaping me at the moment. Even medications I’ve been taking for nearly a decade now, I read the label each and every time I take them. I suppose it is one of my OCD things.

Today, I was cursing the antibiotics because the cure is worse than the disease at this point. I can’t eat because they make me nauseated yet you are suppose to take them with food. There are… let’s just say… bowel issues as well. The antibiotics they put me on are extremely powerful. So I picked up my bottle of antibiotics while attempting to contemplate the current feeling icky thing. And that is when, for the first time, my brain actually registered what the label said.

“Hello senility! Nice to see that you interfered to such a degree that I forgot how to read and comprehend written words for nearly four days. You caused me to seriously overdose. “

What my brain was seeing: take 2 tablets twice a day until finished.

What the label actually says: take 2 tablets once a day until finished.

No wonder I am feeling extra crumby. I’ve been taking 2 grams of this killer antibiotic instead of one. And now here are the ramifications of losing the ability to comprehend type: 1) I’ve completely wiped out any immune system that the once a week chemo hasn’t already wiped out; 2) I’ll be short 3 days of treatment. That is not good as failure to finish a course of antibiotics can the original infections to come back with even greater ferocity. 3) Increased risk of new infections on top of the 4 my body is currently trying to combat.

Now, that is scary enough in itself. But the thing that has me the most afraid is that I was senile and the results are dangerous. If you’ve listened to the podcast I did last year re: lupus, you’ll know that my brain and intelligence is of the most importance to me. It is my best asset. I use to be beyond brilliant. I’ve moments of being dull, but this is a new low. Going senile and losing my ability to be intelligent is my biggest fear. I need my brain. I need to figure stuff out. I need my almost eidetic memory. I need to think. I need to rationalise.

And I’m losing it.  Death does not scare me. Perhaps losing my ability to walk, yet again, does not scare me. Organ failure does not scare me. Well they do, but not the level of being petrified and terrified. For me, if I lose my brain, I do not want to be living any more. I do not want to be one of these people who no longer recognise their loved ones and needs 24 hour care. There is no point in being alive any more as you’ve lost your ability to truly experience. And I wish Canada had laws like Holland does that supports some one if they want to be euthanised. I already have it in my living will that no extraordinary measures are to be taken to safe my life. I do not want to be hooked up to machines. I want to die with dignity.

Well this is depressing isn’t it. I think it is safe to say that I am once again in a state of grieving. That is one of the sucky things about lupus, you are always in some state of grief and it doesn’t get resolved, unlike with the death of a loved one. I miss my brilliance.

And I think that is all I care about this right now. Only sharing it because the lovely Denise Hudson (@RangerDenni), who has been one of my greatest supports during this last fight, said I should.

Surviving the Fear and Frustration

March 31st, 2011

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

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

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

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

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

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

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

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

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

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

Just an idea.

In Which I Survive My First ER Trip of 2011

March 30th, 2011

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.

Taking Stock

December 31st, 2010

I’ve been doing a lot of thinking lately. Despite being busier than I have in a very long time, I find my mind drifting off, as I mechanically go through the necessary tasks of each day.

Writing this blog is a bit premature, as it will lack a little bit of background. This background (for those who are unfamiliar) will be in my article for the January edition of The Lupus Magazine. I will say this has been yet another year in my life where I have had to reinvent myself (some of the other times are described in January’s article). I’ve had to take sizable setbacks and disadvantages and try my best to turn them into something positive.

When 2010 started, I had no idea what I was going to do with my future. I had just finished what I thought would be my last broadcast. I had tried my best to remain optimistic, that another radio opportunity was just around the corner. But as the months passed, nothing was on the horizon. I had lost every luxury (cable, internet connection and telephone). If it were not for my landlady, I would not have been online at all passed March. If it were not for a couple of donations on Geeky Pleasures, that website and this blog would have gone dead in March, as I could no longer afford even the 10 dollars a month for hosting.

Then slowly, things started to improve. Extremely slowly. Painfully so. And not only did I spend 2010 fighting off financial ruin, but I spent almost the entire year experiencing one of the worst Lupus flares I have had in years. I was extremely worried that more organ failure, or worse, another stroke was just around the corner. I think I did a very good job hiding that fear, even so I did allow the stabby to be public now and then.

In July, every thing was in threat of going dark, yet again, including my newest project The Lupus Awareness Virtual Art Gallery, launched World Lupus Day 2010. But thanks to Will Bradley and a fabulous offer to sponsor my hosting, every thing stayed online and I was able to keep fighting and attempt to build a new life and career for myself, all the while fighting off what felt like death waiting just around the corner.

By the end of the year, my health FINALLY started to improve, plus opportunities were finally starting to present themselves. Now I end this year running my three websites, contributing to two others, writing for a magazine, being the layout and design editor of another, plus building a brand new radio station with a more than amazing staff. I’m far from in a stable financial situation again as most of this is a labour of love. But I am much better off, physically and emotionally, than I was at the beginning of this year. It will take a few more events before I’m finally able to breathe again, as far as finances are concerned (regular paying sponsors/advertisers for Geeky Pleasures would be more than fantabulous) but I am not starting 2011 with dread and not knowing how I’ll manage to feed and clothe my children, never mind put a roof over their heads.

Most importantly, I have made some amazing friendships this year, thanks to this wonderful thing called the internet. Plus, I’m in a pretty groovy relationship, which brings me a lot of inner calm and helps me to find my center when I’m having moments of OCD/ Aspie Spiraling /Twitchy Brain/ Toaster/ FUCK THIS SHIT! Without all of you, rebuilding my life, yet again, would have been extremely difficult. The last few times I went through periods like this, I had no supports, neither physical nor emotional, and it nearly broke me both mentally and emotionally. I still may not have the physical supports I need to get through the nasty lupus periods, but all of your emotional support has meant the Universe to me.

Thanks for travelling from the mundane to the insane with me. Thanks for deciding to join me in another year of this wonderful journey, without a destination.

<3 <3 <3

xoxo

Is It January Yet?

November 28th, 2010

I know damn well it isn’t. Jeebus, it isn’t even December yet. But I am chomping at the bit to get back on air in the New Year. A part of me worries that people are going to get sick of me talking about it but HOLY JUMPING SHEEP SHIT, I’M EXCITED!

I feel like a bit of a superhero this week. The station was in danger of falling 2 weeks behind in schedule. Talk about stress when there is an unexpected happenstance, which really threatens to bugger things up. But I seem to work my best when under pressure. After my brain went through its series of, “OH FFS! There is no way we’ll be able to launch on the 3rd if this happens!” thoughts, it quickly jumped into warp speed and came up with a brilliant idea, which would put the Kobayashi Maru to shame. Somehow, I managed to get the station from threatening to be dangerously behind 2 weeks in schedule to being ahead 3 days of schedule. At least 1 portion of it.

The website will not launch on December 1st as originally scheduled. This means the “open to the public” hiring process will have to be cut by however many days delay there is in that. There is no fix for this as it has to do with a funding hiccough and not anything I can control. But everything else is right on schedule and running tickity-boo.  Right now, I am at the point where I’m having to wait on others to get certain things to me. I don’t do well in the “hurry up and wait” game. Especially when I get into a good working rhythm, only to have it suddenly halted. Up side to this, managing to fit 2 weeks of work into 3 days means that when I have to start on the layout and design of the next issue of The Vaccine Times in a couple of days, my time will be much easier to manage.

I’m also chomping at the bit to announce one of the people I’ve hired to do a show and be one of the Music Directors. Sitting on this one is extremely difficult. We’ve been wanting to work with each other in this type of capacity for some time now, so to finally have the opportunity is really awesome. I’m quite excited to work with all of the staff that we’ve hired up to this point. Something would be odd if I weren’t, as they’ve all been hand selected.

I’m excited about the interviews. I have a list of 7 people/groups that I plan on interviewing in the next year. I need to get that list to 12. I don’t have to do an interview once a month, but it would be cool if I were able to swing it. I’m also really really really looking forward to receiving submissions for the Geeky Pleasures theme song.

Hell, I’m excited about every thing! I’ve had a few moments of wanting to blow things up. But they haven’t lasted long. So far, this experience has been a lot better than my previous experience running a radio station. The other experience wasn’t bad per se, it just lacked a few flavours and dynamics that I need in order to be at my best.

A part of me was worried that taking on this project would cause my lupus to flare up even more. I’ve been having the worst lupus flare for over a year now. It hasn’t been this bad in about 4 years. This flare had started to subside shortly before I was asked to come aboard this project. I knew there would be added stress and stress is one of the biggest things to exacerbate and cause flares. So far though, I seem to be running pretty smoothly. I’m not at 100% form (that never happens). I think it safe to say I’m running at about 50% capacity at the moment. I was running at about 10-20% for way too long. Imagine how superpower-ish I’d be if all of my lupus symptoms suddenly disappeared and I was at 100% once more? I think the reason why my health has been staying pretty level is because I am experiencing a good kind of stress. I’m feeling alive, useful, exhilarated and invigorated.

Let’s just hope it keeps up!