Saturday, 17 September 2011

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 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



41 comments:

  1. I cannot understand why such a terrifying and depressing thing can happen to anyone, and I can't even to imagine the horror of it, but I'm proud if you, you're fighting this with such strength and positivity, it's really inspiring. I'm sure your story will inspire and encourage many out there in a similar situation of hopelessness. Keep sharing dear. Hugs (no perfume heheh)

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  2. Thank you Marina! I appreciate the support. Thanks for the 'non-perfume' hug!!! :) hehehe...

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  3. Thanks for sharing your inspirational story. I was also at one point suffering from Multiple Chemical Sensitivities that developed and worsened years after being diagnosed with a rare autoimmune illness. I can truly empathize with all that you had to go through - absolutely chemical-free home, body care products, couldn't go anywhere without getting sick, simple home-made organic foods, etc. I did put some of my experiences in my Health Matters blog http://wealthhealthwise.blogspot.com/2008/01/my-disease-defines-me.html . Let's get together for a cuppa some time :)

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  4. Thanks Gracie. It is so great to meet someone who has gone through the same road. Yes, let's meet up! :)

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  5. I've read this a few times & it never fails to bring tears to my eyes. This serves as a reminder to not take things for granted & show more appreciation. Whenever i feel like an angry bird, i take a deep breath, count to 10, think of this article & tell myself not to grumble over small little things. Thanks Evelyn & take care :)

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  6. Thank you .... I am going trough the same... I have had 3 episodes... the first one was on a cruise going to the Bahamas, i did not know what it was. But i was ithcy all over and with hives... the second one was 1 week after... with an anaphalaxia shock... was taking to the ER...and the third one was 3 weeks ago.. i was intubated and in CCU... it is very scary... fear was to come upon me... i still get hives and itchy... I am a christian..and i believe that the LORD will heal me.... i will not give in to fear... God has not given us a spirit of fear.... so I am trusting in the LORD JESUS CHRIST that i am healed..... and the same for everyone else... i am believing for us all...

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  7. @ Anonymous: Hi there! Thank you for taking the time to read. Yes, it is a scary ride to go through what we go through. But it WILL get better. I hope you have gone for tests and have seen an immunologist/allergist. And yes, trusting in God does help. Because it gives us hope and strength. I wish you all the best in your journey and that you will find peace in difficult times and that yes, your healing. Take care! And I hope to hear more from you.

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  8. Wow! So doctors haven't determined what triggered all this? What were you using the EPI-Pen for to begin with? You must have a history of allergies prior to this?

    I don't know if you should try any outside food! Stick to homemade "real" fresh foods and that's it. Healthier anyway. I haven't used shampoos, conditioners, lotions, deodorants, toothpastes, pain killers for years...makes for a cheap grocery bill, too!

    By the way, you are an awesome writer! Excellent.

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  9. @ Rumraisinful: Hi! All the blood tests that were done came back negative. The likeliest thing that triggered all these episodes are salicylates and chemicals. It all actually started after I had my son. The pregnancy was a difficult one. I almost miscarriage 3 times. I was placed on hormones till about 5 months. When my son was about a year old, I started falling sick. The sorethroat just wouldn't leave. And I had it for months. The doctor decided to give me NSAIDs and that was the trigger point. I started reacting to Panadols, cough mixtures, antibiotics, painkillers. I did not have an anaphylactic shock back then. Just hives that made my eyes swelled shut and some labored breathing. The doctors gave me the Epi-Pen for standby. The serious attack was 30 months back.

    By the way, how do you travel if you cannot consume any 'outside food'?

    Thank you for your encouragement! :)

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  10. Have you been tested for any autoimmune diseases? Like Hashimoto's which is an autoimmune that attacks they thyroid, contributes to increase in allergies. I know Hashi's can make pregnancy really difficult.

    I was assuming outside food meant outside the home? Is that right? I drive, but other than that no traveling. I can go into my local food co-op during slow shopping times and just be careful of smelly people.

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  11. @ Rumraisinful: Oh yes, I have been tested on that. It's the test on the T3. As I have said, all my tests were negative. Yes, outside food is food that is bought from outside. Hahahaha... 'Smelly people!' They will be so overly offended! They are not smelly, they are just over-saturated with POISON! Ehehehehehehe.....

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  12. It's utterly life-changing isn't it? But you are the first person I've heard of who has gone into shock from salicylate overload. Time it was taken seriously!

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  13. @ RAS: I didn't even know what salicylates was! It was like something foreign thrown into my life. And I am not the first to have had an anaphylactic shock from an over-accumulation of salicylates. It is definitely life changing.

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  14. What a beautifully written entry about a terrifying experience! You have a wonderful attitude toward life. I have allergies to all corn derivatives (and even airborn perfumes and air fresheners can set me off) The drs know very little about it and are alternately afraid to touch me and determined to see it for themselves. :( It's hard to fund your place in society again when so many aspects are dangerous to you...but you are so right that it's important to do. To live, and if not for ourselves, for our children. (((hugs)))

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  15. Thank you for visiting my blog! Your story is heart-wrenching. I have a Facebook friend who has the same reactions as you. They finally, finally diagnosed her with Mast Cell Disorder, which basically makes your body your own worst enemy.

    I had my knee replaced on Wednesday, and boy did I send them into a tizzy with my list of allergens. I can take very few painkillers, so mostly existed on Tylenol. I had a spinal, which worked well, but even pairing the narcotics with Zophram failed to stop the nausea. I'm home and doing well, thanks to much prayer but hope I don't have to have surgery again for a looooonnnnggg time! BTW-hubby brought "safe" snacks for me and they kept them in the frig in the nurses' station-saved my life today when my blood sugar dropped and my heart started racing. I wore THREE yellow allergy bracelets!

    Good luck to you and stay safe.

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  16. @Violets: Thank you for replying. :) Yes, it is important for us to do so. Especially when we have children (who are still so young). Big hugs back to you!

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  17. @Marty: Thank you and I wish you all the best too! :) You stay safe too.

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  18. My son is intolerant to salicylates, glutamates and most artificial additives, preservatives, colours and flavours. I've never heard of such a severe reaction to salicylates.. I can emphasis completely with having to change your life around. We also had to go through a stage where we cooked everything from scratch - and we still do a lot of it, even though we have managed to find some same manufactured products.
    I write about this at http://cookingforoscar.com

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  19. @Oscar's Mum: Thank you for dropping by. If you don't mind me asking, what are the manufactured products that you managed to find? Yes, I will check out your blog! :)

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  20. Evelyn, I loved reading your story. By sharing, you really enlighten people about food sensitivities and how dangerous they can be. I had an anaphylactic reactin to hair dye 2 years ago and have to carry an epi-pen. My son (possibly 2 of them) have celiac, which led me to a gluten, dairy free diet. I make everything we eat from scatch and that has helped tremendously for my allergies that have come up since my reaction. I probably have celiac but won't start eating the foods to have the biopsy to confirm. My oldest son did not sleep hardly at all after he was born. He was always happy but rarely slept. I took him off all foods with salicylates when he was 10 months old and low and behold, he started to sleep. Even good foods can make people react. Good luck to you.

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  21. @Jamie: Thank you for sharing. I wish you all the best with both of your sons and yourself too! Do stay in touch! Take care.

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  22. WOW! I am so glad you shared your story. I have had about five anaphylactic attacks in my life now. That last was the worst. I couldn't speak at all my throat and lips were so swollen. I have passed out and thankfully woken again but you are so right. We have to take what we're given and work with it to live the best life possible. Thank you so much for sharing this on my blog http://www.whatallergy.com and if you would like to keep in touch I have a weekly newsletter. www.whatallergy.com/subscribe Salicylate allergy is something I haven't written about and don't know much about so if you don't mind, I might write about and if I do I'll include a link to your story. It's very touching.

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  23. Hi Ruth. Thanks for dropping by. :)

    You can have a look at the link below:
    http://en.wikipedia.org/wiki/Salicylate_sensitivity

    http://www.webmd.com/allergies/guide/salicylate-allergy

    Yes, I will take a look at your newsletter.

    Thank you again. :)

    Take care,
    Evelyn

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  24. I am crying as I read this. I know exactly what you are talking about. I thought I was free from all of it for the past few years. I had been fortunate enough to have healed but it seems, it is back. I have to go back on the chemical-free path and not lose hope and not let fear take me over. Thank you for your words. You are a strong hand waving me on. God bless.

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  25. Hi there! Heliotrope is a very nice colour! :) I wish you the best and yes, we shall move on and fight on and win this battle. I am glad to know you. Keep in touch. I await the day where you will tell me the good news: That you are well again! All the best!

    Lots of hugs,
    Evelyn

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  26. Evelyn, I read your post with deep admiration for you, thanking God at the same time for your perseverance, new outlook and never say die attitude. I got the link to your website from Sharon, pauleman's wife. My 7yo girl is highly allergic to dust mites and eggs and yeast/candida. She is also seeing dr yadav for consultation, but a lot we have to research ourselves. She gets, or sometimes we get this annoying reactions from people who go "what? So poor thing! Everything also cannot eat!" but yea, she gets the best food, mostly organic, fresh and home cooked! She is not well yet, many times I cry out to God

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    1. Hi Irene! Thank you for dropping by. Tell Sharon thanks. I have not even met her! :) Your daughter has to eat only flat breads? What type/kinds of bread do you make or buy for her? Do keep in touch. And all the best for your daughter. You are doing an amazing job in caring for her and giving her the best.

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  27. Thanks for sharing your story.
    I am now following the Failsafe Diet at the moment...http://failsafediet.wordpress.com/the-rpah-elimination-diet-failsafe/ They have excellent information about living chemical free and if you can get hold of the book Friendly Food that is helpful as well, as it has recipes as well.
    Sue Dengate's website is also good. http://fedup.com.au/ She also has a good book called The Failsafe Cookbook as well. There is also a Failsafe eating support group on facebook as well.
    Thanks for reading my blog. :) (thekiwione wordpress)

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    1. Hi Tigger! Thanks for dropping by. Yes, I have heard and read snippets on that book. Thank you! I wish you health!

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  28. I have to add to this because I have had my daughter following the Failsafe diet and I have been using the Failsafe Cookbook since 2005. She is now 12 and well when she keeps to her diet. I have great fear regarding medication and have spent more time than I can tell you trying to get accurate information and help. More people need to know about the dangers of salicylate intolerance. I am so glad people are responding to you. It has been a very isolating experience for my daughter and myself but we are so happy that her health has gradually improved but still frustrated. It seems that there is a problem with lack of enzymes in the body and the phenol sulphur transferese pathway but it is very complicated and needs to be researched and studied.

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    1. Thank you! :)

      I wish your daughter even better health. Yes, it is very frustrating. To keep on keeping tabs on the amount of salicylate I consume, was exposed to or used. I never know when an attack will come. I try my best and hope for the best. And I pray that I will be around and in one piece until my 7-year old son is a grown-up!

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  29. Oh my gosh. I feel like I've found a relative. I had anaphylaxis that wouldn't quit and I guess I am in the throws of trying to get out of a reactive state, reacting to smells, foods you name it. I would be SO interested in what you found helped as you are one of few that seem to have gone through something similar... are you off medications now? I am on SO many and trying to get off steroids. How did your doc know it was salicylate sensitivity? Do you think it was?

    Here is my blog

    http://mastcelladrenalinsufficiencypots.blogspot.ca/

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    1. Hi! The reason I started this blog was to look for people like me as up till today, I have yet to find someone like me in Malaysia. But I have found so many people like me all over the world through the internet! :) Something which is not a celebration, but I don't feel so alone.

      I am on 2 tablets of Xyzal 5mg everyday. I consume them after lunch. If I eat them after breakfast or dinner, I am a hallucinating zombie for the next two days. But after lunch, I am fine. Don't ask me why. I was on Prednisolone for about 2weeks after the major attack which I almost died 3 years ago. I had multiple jabs of Hydrocortisone in a duration of 1 week.

      No tests showed anything positive, which meant that they couldn't find out what was wrong with me. But my immunologist/allergist did a background study and history of my life and with his years of experience (he is 80 already!), he concluded that I was salicylate sensitive.

      I did go on the salicylate-free diet and I did improve. And if I pigged out on salicylate and did not keep a tab on what I was eating, the attacks would come again.

      Of late, I have become EXTREMELY smell-sensitive. Smells which did not affect me 3 years ago, now affects me very much and can trigger an anaphylactic attack in me. My allergist/immunologist said that somewhere along the line, I have become chemically sensitive too.

      Today, I can consume small amounts of food with salicylate. Still no outside food. But vegetables with salicylates are ok. But I still play it safe and limit them in minute amounts. I do not want it to add up in my system and trigger an anaphylactic attack again!

      Here is a link which the moderator of the online support group that I joined started. Have a read:

      http://www.iainfoctr.com/index.php

      You could also e-mail Candace Van Auken and share with her about your condition and she could help you. She herself is an anaphylaxis sufferer.

      Alternatively, you could join my support group and write about your condition and the women there could help you. They are from UK, USA, Canada, Brazil ... etc.

      Here is the link:

      http://health.groups.yahoo.com/group/iasupport/

      Take care and I hope I have helped you somehow.
      Evelyn

      Once you have determined your triggers, things will settle down. Mine did. That is if I do not blow and explode in anger like a crazy woman and cause chemicals in my body to go haywire and trigger an anaphylaxis. That is what I noticed about myself.

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  30. Thanks Evelyn, I am part of the canadian and US mastocytosis society forums, the mast cell/IA forum, a yahoo group for people with mast cell disease, POTS etc and had visited the IA info center blog but had not yet joined the yahoo IA group, so I just did!

    I have been on steroids, ketotifen, cromolyn, cetirizine, ranitidine and singulair for ten months but trying to wean the steroid.

    That is bizarre that your smell reactions just started. Mine started three months after my first anaphylaxis and I presumed was related to the steroid taper but it was after being exposed to garlic roasting. Ever since I can't smell anything without reacting.

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    1. Their reply is a bit slow. But don't worry, you'll get replies.

      Yeah, sometimes things happen. I was supposed to be salicylate-sensitive, but somehow it has progressed to chemicals too. My nose is super sensitive. I can tell the 'grade' of the food just by smelling it. I can tell whether the oil is recycled or not, the nitrates in the sausages, the cockroach which is hiding somewhere at the back of the house, the type of food which is being cooked by the neighbour, whether the food which is being reheated is overnight or fresh ... etc. I am a vampire where smells are concerned! HAHA! Or maybe a scent-dog!
      I feel like I am going though morning-sickness all over again (just ten times worse)! Can't take smells!

      I was sensitive to smells after the anaphylactic attack, just not THIS sensitive. And it was mostly chemicals from detergents, paints, petrol smell at the petrol station, cleaning fluids, etc. Now it is food too!

      I am sure you have been given some kind of stomach meds like Controlloc or Nexium? I had Controlloc. The gastric and heartburns and stomach upsets caused by the steroids were horrible!

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  31. Dear Evelyn,

    Just some comfort that I had my first anaphylaxis shock about 25 years ago. At that time I was in AU studying and had repeated admissions during my studies. The doctors had done all the test and they could not narrow down the culprits but suspect strongly due to MSG, Penicilin and Metabysuphate.

    Initial years I was very careful what I consume but as time goes, has now managed to venture out to outside food with caution. I still occassionally have about 3-4 episodes of allergy attack per year with different degree of severity.

    All I can say after all these years is that life goes on and after some years it becomes easier. I even have a case where the ER doctor had made a remark that I am "still alive".

    So wishing the very best and hope things stabilizes for you with less surprises.

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    1. Dear Pl, thank you for sharing your story and encouraging words. 25 years is a long time!!!! I am glad that you have fought the good fight and that you are doing well.

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    2. Good health to the both of us! :)

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  32. Evelyn,

    I am proud of you too. Some people learn what you have learned early, some late. Some learn it quickly during a short period of mishap. Some take longer to learn it and need to go through tough trials to help them learn. You are definitely a fast learner.

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    1. Thank you Yvonne. You are an amazing and strong person! :)

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