ApprovedAs a child I was almost never poorly. Growing up I always had a feeling illnesses were for other people, for the “weak”. You see my family is made up of generations of rather mad and wonderfully weird Greek people whose binding characteristic is their sheer stubbornness and their “head on” approach to anything life throws them. Stories of my grandmother dancing the night away whilst having pneumonia and a temperature of 105 degrees and of my mum not even dreaming of missing school when severely ill with whooping cough, coloured my childhood. So imagine my surprise and embarrassment when at the age of 20 I began experiencing bouts of extreme fatigue. I hid it best I could for as long as I could (which in truth wasn’t very long at all) and carried on. That summer I went to give blood and the doctor noticing my pale colour decided to run a full blood count instead.
And so came strike number one, I was anemic, shortly followed by strike number two, blurry vision and incomprehensible eye pain. And so the tests began. And the strikes continued unabated for two and a half years… No matter how many meds I took, how many tests I got, how many specialists I talked to and how many hours I spend wishing, hoping I had dreamt it all, that it was just a nightmare and that I was bound to wake up at some point; the diseases that by then had been identified and diagnosed as APS and lupus always seemed to be one step ahead.
My lupus was resistant to almost every single med, strange and pretty severe symptoms kept landing me back in hospital and the future seemed pretty bleak. I got oral steroids, oral iron tablets, iv iron, almost 40.000 ml worth of iv steroids, cellcept, cytoxan, rituxan, plasmapheresis, immunoglobulins, iv heparin, sub-q heparin, aspirin and so many more meds but no matter what immunossupressants and how much pred I was on the disease progressed without missing a beat. I went through endless bouts of pleuritis, pericarditis, nephritis, seizures, DVTs, superficial venus clots, acrocyanosis, PEs, brain clots, fevers going up to 106 degrees, bilateral optic neuritis, meningo-encephalitis…. I could go on and on and on…
Thus was my life for 2.5 years; a journey of the unremitting onslaught of my diseases full of pieces of my life being stripped away from me in front of my very eyes… And just when I thought things couldn’t get any worse; they did. I landed in hospital, the ICU, with an extremely rare complication of aps, something called catastrophic antiphospholipid syndrome in which various organs, veins and arteries all over one’s body clot practically simultaneously. I walked to my ICU room, my kidney doctor on one side, my rheumatologist holding my hand, that was by that time shaking like a leaf, on the other into a room full of machines, equipment, nurses and ICU docs ready to put me on drips, do EEGs, insert central lines and with a plasmapheresis machine with its technician waiting just outside the room ready to enter and start plasma exchange. I stayed in hospital for so long, and that at the time was nearly unbearable. What seems more important now though is that I lived to tell the tale!
I know it sounds a bit silly now, but at the time I was petrified. Not of dying or being disabled, that hadn’t even occurred to me then, but of this “monster” overshadowing my whole existence, of lupus and aps swallowing the essence of what made me me; of losing myself to this “thing”.
At the moment, I’m as healthy as can be. In the past few months I’ve gone back to university and will graduate in May, I’ve stayed out of hospital and am on as few meds as possible. The joy of being able to get up in the morning in my own bed, in my own house, having a cup of coffee and taking my dog for a walk is beyond words. I never thought such a simple thing could ever make anyone so happy!
Being ill at any age is incredibly hard, but being ill at 20 is I think just a little harder (and I may biased here!) for oh so many reasons. Having lupus or aps does make you grow up a little faster and deal with things previously unheard and un-thought of… For me the tough thing was to realize that I wasn’t letting anyone down, that people didn’t think less me of me, that I wasn’t lazy or weak. You see people generally equate youth with vitality and health; the opposite is often unthought-of.
The two years I was so ill were harder than I could have ever imagined life could be. But in truth, speaking from where I am now, if I had the choice to go back and change the course of things, if I had the option to undo whatever it is in me that went so wrong and made me so ill in the first place I wouldn’t dream of doing anything any differently, of being any different. Now don’t get me wrong, I don’t enjoy being ill nor would I wish it on anyone. But lupus and aps, for me, have been as much a spiritual adventure as a physical one; and I wouldn’t change that for the world. What I was afraid of, losing myself in the monster of my illnesses may have happened but the pieces of me that were “re-born” because of it are better for it. And the person that I am now, the person I’ve become during those the relatively short time I’ve tried to come to terms with having two chronic, incurable diseases is a much happier, open, relaxed, accepting, peaceful person; not in spite having being ill, but because of it….
I hope I'll remain healthy for a long, long time but even if I don't I'll still be forever gratefull for the time (however little that is) that I spend in good health and for the wonderful people that I've had the honour of meeting here! :bigsmile:
Zoi
And so came strike number one, I was anemic, shortly followed by strike number two, blurry vision and incomprehensible eye pain. And so the tests began. And the strikes continued unabated for two and a half years… No matter how many meds I took, how many tests I got, how many specialists I talked to and how many hours I spend wishing, hoping I had dreamt it all, that it was just a nightmare and that I was bound to wake up at some point; the diseases that by then had been identified and diagnosed as APS and lupus always seemed to be one step ahead.
My lupus was resistant to almost every single med, strange and pretty severe symptoms kept landing me back in hospital and the future seemed pretty bleak. I got oral steroids, oral iron tablets, iv iron, almost 40.000 ml worth of iv steroids, cellcept, cytoxan, rituxan, plasmapheresis, immunoglobulins, iv heparin, sub-q heparin, aspirin and so many more meds but no matter what immunossupressants and how much pred I was on the disease progressed without missing a beat. I went through endless bouts of pleuritis, pericarditis, nephritis, seizures, DVTs, superficial venus clots, acrocyanosis, PEs, brain clots, fevers going up to 106 degrees, bilateral optic neuritis, meningo-encephalitis…. I could go on and on and on…
Thus was my life for 2.5 years; a journey of the unremitting onslaught of my diseases full of pieces of my life being stripped away from me in front of my very eyes… And just when I thought things couldn’t get any worse; they did. I landed in hospital, the ICU, with an extremely rare complication of aps, something called catastrophic antiphospholipid syndrome in which various organs, veins and arteries all over one’s body clot practically simultaneously. I walked to my ICU room, my kidney doctor on one side, my rheumatologist holding my hand, that was by that time shaking like a leaf, on the other into a room full of machines, equipment, nurses and ICU docs ready to put me on drips, do EEGs, insert central lines and with a plasmapheresis machine with its technician waiting just outside the room ready to enter and start plasma exchange. I stayed in hospital for so long, and that at the time was nearly unbearable. What seems more important now though is that I lived to tell the tale!
I know it sounds a bit silly now, but at the time I was petrified. Not of dying or being disabled, that hadn’t even occurred to me then, but of this “monster” overshadowing my whole existence, of lupus and aps swallowing the essence of what made me me; of losing myself to this “thing”.
At the moment, I’m as healthy as can be. In the past few months I’ve gone back to university and will graduate in May, I’ve stayed out of hospital and am on as few meds as possible. The joy of being able to get up in the morning in my own bed, in my own house, having a cup of coffee and taking my dog for a walk is beyond words. I never thought such a simple thing could ever make anyone so happy!
Being ill at any age is incredibly hard, but being ill at 20 is I think just a little harder (and I may biased here!) for oh so many reasons. Having lupus or aps does make you grow up a little faster and deal with things previously unheard and un-thought of… For me the tough thing was to realize that I wasn’t letting anyone down, that people didn’t think less me of me, that I wasn’t lazy or weak. You see people generally equate youth with vitality and health; the opposite is often unthought-of.
The two years I was so ill were harder than I could have ever imagined life could be. But in truth, speaking from where I am now, if I had the choice to go back and change the course of things, if I had the option to undo whatever it is in me that went so wrong and made me so ill in the first place I wouldn’t dream of doing anything any differently, of being any different. Now don’t get me wrong, I don’t enjoy being ill nor would I wish it on anyone. But lupus and aps, for me, have been as much a spiritual adventure as a physical one; and I wouldn’t change that for the world. What I was afraid of, losing myself in the monster of my illnesses may have happened but the pieces of me that were “re-born” because of it are better for it. And the person that I am now, the person I’ve become during those the relatively short time I’ve tried to come to terms with having two chronic, incurable diseases is a much happier, open, relaxed, accepting, peaceful person; not in spite having being ill, but because of it….
I hope I'll remain healthy for a long, long time but even if I don't I'll still be forever gratefull for the time (however little that is) that I spend in good health and for the wonderful people that I've had the honour of meeting here! :bigsmile:
Zoi
