Littlesisknits Blog: September 2011

I have had a terrible time expressing how I feel even when I pour my heart out and cry as I write. Today I want to include 2 posts from another blogger in my post with her permission. She has come a long way in her 30 months fighting the unknown darkness. She doesn't use her epipen frequently like I do and isn't on 25+ medications, but she is following a diet from Hades.

I thank the others in my situation who share feelings, triumphs and failures. It makes me feel like I am not fighting the unseen enemy alone. Here are the entries from Evelyn's blog.

The Day I Met Death

The sensational news of the 33 miners stuck for 2 months plus in a hot, humid tunnel 2,050 feet underground in Chile captivated the attention of the world. And for the first 17 days they were cut off for from the world above them. No communication whatsoever. And nobody above ground knew whether these 33 men were alive or dead. The amazing part is that they survived for 17 days with death breathing down their necks. Their determination and sheer will to survive is astounding. This experience will stay with them forever. Their lives will be transformed. I hope that they will progress and not regress. To give up in life after overcoming death would be such a waste.

It has been 30 months now since I met Death. And these 30 months have been life-changing for me. It has been nothing but difficult and challenging, but the journey of self-discovery, of seeing things in a whole new perspective or learning to live again has been necessary. It has taught me how to make lemonade out of the lemons that life has thrown at me.

At the mere mention of the word 'death', many would cringe, touch wood, change the subject abruptly or even say, 'CHOY!' But it is 'death' that I am going to talk about today. By encountering 'death', I was rudely awakened from my slumber and learned to live all over again. And honestly looking back at the years I have lived, I was never alive. I was like the living dead. A person with a living body, but with a dead soul. Are you one of those living dead? Just barely scraping through each day of your life. Dragging your life through each day waiting for the next to end. Or living a life with no passion or purpose or joy.

March 2nd 2009 was just like any other day for me. Waking up, going about my normal routine: looking after my child, preparing meals and normal house chores. The first encounter happened during lunchtime. After chewing the peanuts from the chicken and peanut soup for the umpteenth time, a very strong foreboding feeling washed over me. I knew something was terribly wrong but didn't know what it was as this has never happened to me. I immediately went to my mother and told her that if I collapsed, my Epi-Pen was just in the cabinet. The foreboding feeling left and I didn't give it much thought after that.

Dinnertime came and I drank the same soup again! This time the reaction manifested physically. My lips swelled to the size that it would put Angelina Jolie to shame! And by the time I reached the hospital, my blood pressure had plunged, my throat and tongue had swelled to the point I had difficulty talking. I was given steroids and anti-histamine and was admitted for two days. Two days of continuos steroids and anti-histamines. I was discharged on Wednesday morning and was rushed to the ER again on Wednesday night. I kept reacting, to what I didn't know at that time. This time the ER doctor sent me home saying that 'I looked fine and was fine' even after we told them of what happened on Monday. I was very lucky that we did not meet this doctor in the wee hours of Saturday morning.

On Saturday at 1.30am, the worst allergy reaction struck. I was very stoned and groggy from all the medication, but a voice in my heart told me not to sleep. I think if I had slept, I would have died in my sleep. I felt my heart failing, my whole system shutting down and going into shock and I was blacking out. I woke my husband up and he jabbed me with the Epi-Pen and once again we rushed to the ER. This time I knew that I might not return at all. I was slipping into unconsciousness in the car and then I wasn't in my body anymore. I was moving into this dimly lit tunnel and Death was embracing me. I was in Death's arms and it was leading me to go deeper into the tunnel. The coldness that Death is can never be measured with all the eons of winters on this earth combined. As I moved into the tunnel with Death, I heard my husband’s voice calling me from a distance, calling my name, asking me to go back and that our son needs me. And in an instance, I was back in my body.

By the time we arrived at the ER, my veins had collapsed and they had to prick anywhere and everywhere to get a vein. I was lucky that the ER doctor that night had also experienced an anaphylactic attack and thus understood what allergy was and the seriousness of an allergy attack. When they finally found a vein and when the steroids coursed through my veins, I felt such relief. I could breathe. I could feel my heart returning to normal. And I knew that I was safe, for now.

I was admitted again, pumped up with medications and I was pricked by the daytime vampires, night time vampires and afternoon vampires constantly. Blood for this test, that test and every test that is imaginable. Up till today I still bear some scars of the needle marks. They remind me of how much I've been through and the things that I've learned throughout this journey.

The following months were hell. Someone had to be with me all the time. People who have had anaphylactic shocks were susceptible to having recurrent attacks. And when that happens, we could just collapse. And with no one around to administer the Epi-Pen, it would be fatal.

All the test results came back negative. That is good news AND bad news. The good news was that there was nothing wrong that they could find with me. Bad news was, what was it that happened to me then? What triggered the attacks? More trips to doctors, hospitals and tests and still NO answer. The only answer was in the years of experience of Dr.Yadav, Malaysia's only immunologist allergist. Even his tests came back negative. But because of his years of experience and the vast knowledge that he had, he believed strongly that I was salicylate sensitive. Salicylate is a component in aspirin. Salicylate is practically in everything. It is in food flavouring, sauces, food colouring, additives, spices, herbs, food preservatives, and even in fruits and vegetables. Salicylate is used in shampoos, soaps, paint, creams, toothpastes, detergents, mouthwash, lotions and etc. You get my drift, they are in EVERYTHING! How was I supposed to live a 'normal' life or even stay alive when everything had salicylate? My diet was reduced to fresh food: chicken, fish and a selected few fruits and vegetables. And the only thing that I could cook them with was salt, sugar and sunflower oil. No outside and processed food AT ALL! For months I was just eating the same food, day-in and day-out. Even the smell of belacan, durian, petai, detergents, shampoos, soaps or even hair-creams would trigger an allergy reaction. Because of the fear of anaphylactic shock, I had to go for a colonoscopy anesthetic-free. The doctors said I was too high-a-risk. When I'm in pain, I have no painkillers, NSAIDS, or even Panadol. Doctors tell me the same lines all the time, 'You're a doctor's worst nightmare because you're allergic to EVERYTHING!’ ‘Try not to fall sick.’ ‘I don't know what medicine to give to you.' And if I had to try a new medicine, as there are no more options, I would have to be admitted and be placed on high-alert, in case I react to the medication.

I became very depressed. I was very frustrated, angry and became a recluse. I am very, very blessed to have a strong and loving family. Without them I would not have survived those difficult days. There were days so bad that the neighbor's detergent could trigger a reaction so bad that all I could do was curl on the bed and just pray for all of it to end. Smells that triggered migraines from the depths of Hades and severe burning sensation on my tongue as though it was sprayed with acid and then dipped in salt, experimentation with new foods that caused loose bowels until I thought even my entrails would be expunged permanently, attacks so bad that my husband and I actually went to the hospital to wait just in case I dropped dead.

I was fed-up with everything. I was on anti-histamines everyday. And when the attacks came, I would have to double or triple the dose. And I was so stoned from all these anti-histamines. I couldn't even function as a person, as a wife, as a mother or a daughter. I decided to take charge of my life. I didn't cheat death to end up with a life like this. Of course it was difficult at first. I had to experiment with new foods bit by bit. If I reacted to the new food, I had to go back to the 'salicylate-free' diet and when I am out of it, I'll try again. I had to learn to cook, to make food in new ways. I had to learn to make my own chemical-free bread, cookies, biscuits, cakes, and basically everything that I put in my mouth. I had to flee many times in shopping malls when someone's perfume suffocated my air space. I had to forgo many outings and gatherings. And whenever I go out, I have to cook my own food and bring it out. I had to keep my house 'chemical free'. I hate it when people give me looks of sympathy, or said, 'WAH, everything also cannot eat, so poor thing! What kind of life is that?'

It was during these 30 months that I've learned to be resilient, to know which battles are worth fighting for, which ones to let go. I've learned the important things in life are in our hearts not in things. I've learned to live a life free of fear. What is to fear? I have met Death. I've learned the meaning of love. I've learned joy. I've learned to never give up. I've learned to appreciate. I have rediscovered my passion in life again. My vision of life and what life is can never be the same.

It took me 30 months to reach where I am today. Of course some days are 'Moderato', some 'Adagio', some 'Allegro'. I have days where I throw hissy fits. I have days where my mood is of a woman with PMS and menopause combined. There are days where I keep walking into a brick wall. There are days where I feel like I’m clawing my way up a steep, icy mountain with my bare hands. But I take a day at a time. One hurdle at a time. In this period of 30 months, I have had relapses. I have had long periods of time where I did not react to anything. Today I can eat so many more types of food (and reaction-free) compared to 30 months ago. I can even eat foods with a small amount of salicylate. Of course I have yet to try eating 'outside food'. That is my next goal.

To the people who are reading this, don't wait till Death comes knocking at your door before you realise the life that you've been living has been a farce, a facade. Live your life with passion. Get your priorities right. Ask yourself, 'Why are you alive? What is it that you want out of your life? What do you plan to achieve in your life? Are you working towards your dreams? Are you happy and contented with who and what you are?' Live your life before it’s too late.

‘Life is something that everyone should try at least once.’ – Henry J. Tillman

‘There is no wealth but life.’ –John Ruskin

The Journey Thus Far

I wrote this while I was going through a very, very tough period during the month of August. I would like to share this with you here.

29 months. That’s roughly 870 days. A total of 20,880 hours. Which is equivalent to 1, 252, 800 minutes or 75, 168, 000 seconds. Time which is enough to have 3 babies and yet have an extra 2 months. In 29 months, a baby would have learned to eat, smile, turn-over, crawl, walk, run, talk, hum, sing and do a multitude of tasks. For me, 29 months has been a journey of waking up everyday wondering whether it would be my last, whether some chemical would trigger another episode from hell, whether my body would overload and go into overdrive or silence in my head, bowels and senses. 29 months of taking one day at a time. 29 months of pushing my body daily to overcome this condition. 29 months of roller coaster rides. 29 months of wondering why I was spared from death to face so many challenges everyday.

These 29 months can be likened to being enrolled in the school of hard knocks. It’s like standing, getting slammed by a bullet train, getting up again and standing up and trying to be strong again. And then the cycle repeats itself. It’s like the scene from Matrix where Neo fought with Agent Smith in the underground train station. One can never know when or the direction of the next blow or kick is coming from or what ‘form’ or ‘person’ Agent Smith will take. Or when the attacks are going to cease or escalate. It’s a continuous fight everyday. I just can’t wait for the day where I am strong enough that when the attacks come, all I have to do is to just raise my palm and the bullets will stop in mid-air and drop to the ground. And all the attacks of Agent Smith will be futile and I can overcome and destroy ‘my Agent Smith’.

In these 29 months, I have learned how to survive in a chemical world when it was chemicals that almost killed me. I have fought and lost a lot of battles. I have gone through a lot pain, frustrations, anger, denial, defeat and depression. I have asked myself countless times, ‘Am I a failure?’ ‘What kind of life am I living?’ ‘What’s the point of cheating death and living in pain?’ And then one day it struck me. Who said that people like me who struggle with life are failures? And then I thought of the people who fight for their lives daily like me but who are worse off than me. People with incurable diseases. The girl who is allergic to water. Or the boy who is allergic to air and who has to live in a bubble for the rest of his life. And the girl who goes into anaphylactic shock when exposed to cold or cool temperature. These are people who live victoriously even in their imperfect circumstances. These are the people who persevere to be a shining light in this world even though their lives are engulfed in darkness many times.

People in general tend to applaud for the people who overcome their hurdles triumphantly. We tend to not give credit to those who are still in the midst of fighting their battles. I beg to differ. I think people who are in the midst of fighting their battles, who persevere even when they are down trodden, who refuse to let the darkness blind them are to be applauded as winners. They are the champions my friends. Why? It’s because they refuse to back down from the fight. They refuse to wallow in self-pity. They go on day to day ‘living’ their lives. And by living, it’s not living by waking up, going through the motions of the daily routines and then going to bed and repeating the whole cycle the next day and the day after that. They live their lives everyday not knowing whether there will be a tomorrow. And they make an impact with their lives EVERYDAY. They shine like a beacon. They affect others to live their lives to the fullest. They encourage, motivate and help others to ‘LIVE’ when they themselves struggle with the simplest thing in life.

Michael J. Fox is one of the winners whom I applaud. He was such a talented and brilliant actor. And to be struck with Parkinson’s disease at such a young age and at the peak of his career must have been a terrible blow for him. But yet today, he thanks Parkinson’s for saving his life, as it was a turn-around-point for him. His life was spiraling down with his drinking addiction. And when he was diagnosed with Parkinson’s he drank even harder and fell into depression and it affected his marriage and his relationship with his eldest son. He said that it was during a lucid moment that he realized that his life was in his own hands and thus turned himself around. He said, ‘‘In fact, Parkinson’s has made me a better person. A better husband, father and overall human being. Life delivered me a catastrophe, but I found a richness of soul. I owe it to Parkinson’s, no doubt about that.”[1] And today he continuously contributes to the research of Parkinson’s and continues to encourage fellow patients even though his disease has progressed. And to me, this man is a winner.

Another person whom I applaud is Christopher Reeves. Yes, the original Superman who wore his undies on the outside. Paralyzed after a riding accident, the man who once ‘flew’ high up in the sky became a quadriplegic. The accident had separated his head from his spine. He fell into depression, contemplated with suicide, and went through operations to re-attach his spine to his head, and painful rehabilitation. Though he could not walk ever again, he was a winner because he spent his remaining years of his life helping and encouraging patients who were in the same situation as him. Though he never walked again, he regained back some motor function, and was able to sense hot and cold temperatures on his body. And that was impossible for someone in his situation. He also battled allergies and asthma since childhood. And he reacted severely to the many medications that he had to take after the accident. In Kessler, he tried a drug named Sygen, which was theorized to help reduce damage to the spinal cord. The drug caused him to go into anaphylactic shock and his heart stopped. He believed he had an out-of-body experience and remembered saying, "I'm sorry, but I have to go now", during the event. In his autobiography, he wrote, "and then I left my body. I was up on the ceiling...I looked down and saw my body stretched out on the bed, not moving, while everybody—there were 15 or 20 people, the doctors, the EMTs, the nurses—was working on me. The noise and commotion grew quieter as though someone were gradually turning down the volume." After receiving a large dose of epinephrine, he woke up and was able to stabilize later that night.[2] Though he died at the age of 52 and did not walk again, he was a winner because of the decision to live life at its fullest even in his despairing and depressing condition.

For me, though I’ve been hit, smacked, smashed, knocked down continuously in this month of August, I hope that I will rise above my challenges and setbacks and be a winner even in my losses.

We Are The Champions – Queen

I've paid my dues

Time after time

I've done my sentence

But committed no crime

And bad mistakes

I've made a few

I've had my share of sand kicked in my face

But I've come through

We are the champions, my friends

And we'll keep on fighting ‘till the end

We are the champions

We are the champions

No time for losers

'Cause we are the champions of the world

I've taken my bows

And my curtain calls

You brought me fame and fortune and everything that goes with it

I thank you all

But it's been no bed of roses

No pleasure cruise

I consider it a challenge before the whole human race

And I ain't gonna lose

We are the champions, my friends

And we'll keep on fighting till the end

We are the champions

We are the champions

No time for losers

'Cause we are the champions of the world

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1] http://www.dailymail.co.uk/tvshowbiz/article-1326832/Michael-J-Fox-Parkinsons-saved-life-better-man.html#ixzz1UpIwuSnZ

[2] http://en.wikipedia.org/wiki/Christopher_Reeve

Thank you Evelyn for allowing me to share your words and your world with my friends and family. I hope it helps them understand my world just a little more.