The 10 Must-Dos and Must-Haves of an IA Person

1. Epi-Pen 

Carry your Epi-Pen at all times. Even in the house. And yes, even in the toilet. And also it should be at your bedside table when you sleep. (IMPORTANT: Epi-Pens have expiry dates! So be aware of when your pens expire. Get them replaced before they expire. If not, YOU will expire if you have a full-blown anaphylactic attack without an Epi.

2. Medic Alert 

Wear a Medic Alert bracelet or necklace. Yes, even if the ER nurse asks you whether it is an amulet or what language 'Medic Alert' is in.

3.Handphone 

Carry your hand phone with you at all times. Yes, even in the toilet. And please carry a hand phone that has been charged!

4. Medicines 

Carry your medicines with you at all times. Yes, even if it's a walk to the park nearby. You never know what might happen. Shit happens. And it could happen anytime and anywhere. Better to be prepared than dead.

5. Medicines

Eat your meds everyday. Be punctual about it. And don't wait till last minute to get them refilled. They could be out of stock.

6. Letter 

I carry an envelope with the word 'ALLERGY' in capitals, bold and underlined. And in it are letters which some of my doctors wrote, explaining my condition and that I am a patient with a history of anaphylaxis. 

7. Support Group

Find one. It really helps as you will not feel so alone. And when you are down, they can lift you up with encouragement as they speak the same language as you do. Or even find similar people like you. Of course there will be people who will be selfish and not willing to share their survival guide with you. It's ok. Move on until you have found the right one. 

I have found wonderful people from USA, Canada, UK, New Zealand, Australia and even Brazil who have really encouraged me. And I have learned more about my condition and tips on how to survive better.

8. Blood Pressure Machines 

I have one and if I am feeling unwell after an exposure to salicylate or chemicals, I will monitor my blood pressure. If it starts plunging, then I will Epi myself and head to the ER.

9. Know Your Trigger Points 

10. Eat, Sleep and Be Merry 

Easier said than done, but it is necessary for our survival.

Medic Alert

If you have allergies, you should be wearing a Medic Alert bracelet or necklace.

The purpose of Medic Alert is to provide information of an unconscious person concerning their medical history and allergies. Fatality could be avoided in such situations.

For Medic Alert Malaysia, you can go to this website below:

Medic Alert Malaysia

Though I have been asked by a nurse in the ER to whether my Medic Alert bracelet is an amulet, I still believe in wearing it. Better to be safe than sorry.

The Epi Pen

Dear God

Dear God,

How are you feeling today? Hope that you're feeling good today. Me? Well, I'm sure you know that things have not been very well of late. Although life is now bearable with a double dose of Xyzal, two months of  continuos attack can be very taxing for one's body, not to mention the soul and mind.

I know that there are people out there who are worse off than me and that there are people better off than me. But I am not happy at where I am. 

I want to be able to go out on a whim and to not worry and having to rush home after a certain time because I do not have anything to eat. I want to have days where when I don't feel like cooking, I am able to go to the coffee shop down the road  to buy a packet of economy rice and just enjoy. I'd want to travel to countries that I have never been before. I would like to eat Char Kuay Teow with all the delicious sauces and ingredients. I would like to pig out on Spaghetti Bolognese and Hawaiian Delight Pizza and not react. I would like to able to go to the toilets out there without running out of the place the moment I step in and having to hold my pee looking for another toilet because the previous one reeked with bleach, Dettol and air-freshener. I would like to live a life where I do not need to freak out when 'smells' waft over to my air-space.

That being said, I would like to thank you for giving me such great parents, though I've scared the shit out of them many times! Thank you for my hubby who helped me out with the house chores, and in taking on my load when I was totally out of action. Thank you for my only sibling who helped in whatever way that he could. And thank you for my son who at six years old is more mature than a 10 year old kid. He helps me all the time and gives me non-stop Herculean-strength hugs and tells me he loves me frequently everyday.

I also would like to thank you for the friends who have been supporting, encouraging and pushing me to go on. Their messages, e-mails and SMS-es have greatly encouraged me and kept me going on when difficult times came.

So God, here's what I want. I want my life back. I won't say that I have not learnt anything during this 30 months. In fact I've learned far more than I've learned in my entire life. Christmas is coming, so I'm asking you in advance for my 'gift'. Perfect health with no meds, no need to carry Epi-Pens, steroids, meds, no need to wear a Medic Alert bracelet or run from smells and can-eat-and-use anything and everything with no reaction whatsoever.

I thank you in advance for my 'gift' and thank you for not stopping me abruptly like some of the GP doctors who asked me in an irritated tone, 'So what is it that you want?!' I'm grateful for your time and in letting me rant out my frustrations.

Forever Grateful,
Girl, Alive

Understanding People with Idiopathic Anaphylaxis for Dummies

1. Do Not Stare!

• Did your mother never teach you that it is rude to stare? Wearing a mask does not necessarily mean that I am sick. I am merely protecting myself from the combination of the chemicals that is wafting around in the air.
• I am protecting myself from YOUR germs and viruses.
• Me eating from the Thermos does not mean that I am a cheapskate who can't afford to eat from the restaurant (my family ordered and is feasting away at the food by the way). Don't give us that disgusted look. Don't judge before you know the story. Or need I stamp the word, 'ALLERGY' on my forehead?

2. Do Not Ask Stupid Questions

• "Could it be it's all in your mind?" Who in their right mind would 'pretend' to suffer from 'idiopathic anaphylaxis' and be home-bound, drugged up and not live a life of a normal person?!
• "Maybe you need to be MORE positive?" If I'm not positive, I would not have lasted 30 months, mind you.
• "Are you sure you are not imagining all this?" Let me tell you what IMAGINATION is. Imagination is skinning you alive and hanging you on a 10 foot pole and leaving you out there for the vultures to feast on you. Now THAT'S imagination!
• "Maybe you are not praying enough?" "Maybe you need to have MORE faith?" "Have you been reading enough of the Word of GOD?" Just because I don't punctuate my every sentence with 'Hallelujah!' or 'Praise the Lord' does not mean I do not have faith or I don't believe. I believe in God. I don't believe in the commercialization of God. Period.

3. It Is Not About You

• Don't take it personally if I move back, cover my nose or put on a mask because of your over-powering perfume. For me, it's like walking into the gas chamber. I can even taste your perfume and it translates into a chemical taste which burns my mouth, tongue, lips and throat.

4. Don't Say Stupid Things

• Don't tell me, 'You certainly don't look sick! Are you sure you're that sick?' Seriously, who would in their right mind be out if they are LOOKING sick?! Of course I don't. It's my good day. Do you think I would be out if I looked sick???? I would be in bed, drugged up when I am SICK. Certainly not out shopping in a mall!
• Don't tell me that my life is so pitiful, so sad, so terrible and so horrible that I can't go anywhere, eat like a normal person or live like a normal person. Of course I know that! It's like telling a cancer patient on chemotherapy 'You're going bald.' Duh!!!

5. Learn to empathize.

The following four points are for doctors, nurses and people in the medical line.

6. As a doctor, don't tell me that you don't know what is wrong with me, is afraid to dispense medicine and yet keep me in the hospital for 'observation'. Pass me to another doctor who understands and can treat me. Don't sit in front of me and stare into space for eternity and only respond when I interrupt your 'deep thinking' by telling me 'I don't know what to do with you.'

7. When a patient arrives at the ER telling you that he/she is having an allergy attack, don't tell them to have a sit first or register your wife/daughter/mother/god-mother/great grandmother first and then take your own sweet time discussing with the other nurses about the previous patient who almost died. Surprise! Surprise! Now isn't it surprising that your previous patient almost died with your immaculate service?

8. Do not ask me whether my Medic Alert bracelet is an amulet and whether 'Medic Alert' is in Thai language. Shall I  take the Hydrocortisone 250mg and Puriton and jab myself while you go figure out what language 'MEDIC ALERT' is in?

9. Don't snicker or snigger in my face when I tell you that I am allergic to chemicals. Your ignorance and arrogance = death for your patients.

10. Since this is a lesson for dummies, let me offer you some tips on how to deal and interact with people like me.

If you do not know what to say to me:

• Ask me how I am. I will tell you. In a short and sweet manner.

• Tell me that I look good/healthy and NOT 'You certainly don't look sick, you know,' dripping with sarcasm.

• Tell me that I have your prayers and support. I will say thank you from the bottom of my heart.

• Tell me to continue fighting and continue being positive. I will say thank you.

• Don't bore the living daylights out of me by whining to me about your sad, depressing and pathetic life and that you wished that you were dead because you broke a fingernail or because you've been promoted from a size two dress to a size three or because your boobs have begun to sag.

• Do not tell me that I should have MORE faith and try to have another child. This truly pisses me off. Are you going to take over my position as mother and raise my child up if I die as a result of a leap of foolishness?

I welcome genuine and sincere questions from people who want to know more. I despise people who ask questions to shoot me down or dismiss my condition like it's an 'imagined' condition or who pretend to listen and then ask me the same questions over AND over again. 

To all fellow people like me, feel free to add to what I may have missed out. Let's keep on fighting and stay strong my fellow friends!