Saturday, 31 March 2012

A Voice in the Dark

The reason I started this blog was primarily to look for people like me. And find them, I did! Haha!


Living with Idiopathic Anaphylaxis has made me feel many times, as though I am in the shoes of Luke Skywalker when he crashed into Yoda's swamp planet, Dagobah. IA tends to wear one's patience and aptitude out. Aptitude for persevering and fighting on and on with no end in sight. Yoda had to break the young Skywalker to build and train where Luke's patience was concerned and the-never-give-up attitude. That is how I felt and still feel, forever being tested where my patience is concerned. And also where the 'fighting-spirit' is concerned. The never-give-up attitude. And to fight the best that I can and come out alive, in one piece.


No one will ever understand what we people with anaphylaxis go through. We can explain till the cows come home but they will never fully understand until and unless they step into our shoes and live our lives. The best that they can do is to encourage, sympathize and empathize with us.


So fellow 'Anaphylaxis-ians', I am glad that we have found each other. Though we are hundreds of miles apart, I am glad that we can share our stories, learn from each other new ways to survive or cope, and just to listen to each others' rants and frustrations!


Anaphylaxis is still not well-known by the mass out there. Let's join forces and spread the word out. Let's be the 'force' that will educate people of this condition. That there ARE people who are living with this condition, who have had to give up their jobs, their lives and their passion (and sometimes, even put their family life on hold) or even re-locate because anaphylaxis came along and turned their lives upside-down and inside-out. They are NOT demented people, not 'craving-and-crying-for-attention' people, not 'joy-suckers' people, not 'faithless-backslidden' people, and certainly NOT people of 'great-IMAGINATION-that-manifests-and-results-in-trips-to-the-ER!' I mean, if someone wanted attention, they would have joined some reality TV show to the likes of The Kardashians or 19 and Counting. Or maybe even Hell's Kitchen? Jersey Shore?


So let's be a voice in the dark until there comes a time, that we are no longer in the dark. That doctors will acknowledge that what we have and go through is REAL! And the scales will fall off the peoples' eyes.


Let's keep on fighting! What say you?


Like Yoda said, 'Do or do not. There Is No Try.'



Friday, 30 March 2012

Container Gardening - An Update

Grubs!
Grubs that come from these beetles!
They seem to be forever mating!

These grubs are actually very damaging to the garden as they suck the life out of the plants through the roots! It is a loosing battle fighting them! Then the sparrows came to dig them out from the pots and in the process killed many of my seedlings!

This is my THIRD attempt in trying to grow parsley! I can't seem to get the seeds to grow!
More bougainvillea flowers!
Another round of kangkung harvest!
The Okra plants!


A day's harvest!
Another day's harvest!
This one was attacked by a worm which burrowed a hole in it.

A sea of pink Periwinkles!

A very busy bee in the Japanese rose!
Zucchini! And I have four pots of them. I am growing them for the first time. Hope they all will grow fat and delicious zucchinis!
I allowed a tray of red spinach to bolt as I wanted to harvest the seeds. I have not been buying spinach seeds. One stalk can yield A LOT of seeds!!
This tray of spinach came from the seeds I gathered from a few flowers from the stalk above.
New trays of Siu Pak Choy!
Japanese Roses!
The Jasmine plant which is now 6 feet tall!
Lovely Okra flower!




Wednesday, 28 March 2012

Salicylate-Free Banana Scones

Ingredients:

1. Self-raising flour (2 cups)
2. 2 large eggs
3. 1 1/2 cups of home-made soya+oats milk
4. 5 large bananas
5. 3 tablespoons of sunflower oil
6. 1 teaspoon of sea-salt
7. 1 teaspoon of brown sugar

-------------------------------------------------

1. Sieve the flour, salt and brown sugar into a large bowl.

2. Beat the eggs.

3. Mash the bananas.

4. Make a well in the dry combination and pour half of the beaten eggs, bananas and soya milk.

5. Mix the ingredients thoroughly.

6. Add the remaining eggs, bananas, soya milk and sunflower oil and continue stirring until everything is thoroughly mixed.

7. Heat a frying pan.

8. Place tablespoons of the mixture on the hot pan. Flip it over when one side is browned.

9. Once it is done, allow it to cool.

10. Serve when it is warm.

Bon appétit!








Tuesday, 27 March 2012

Mall-Culture Society

The thing with living in Malaysia is that we are a mall-culture-society. We hardly have parks. And when we do have, it is either situated at one end of the world where driving is the only option (and where you have to brave the traffic jams in order to reach them). OR they are packed with people to the point you feel like sardines in a can. And if it's not packed, it is a damn hazy day! We have haze perpetually all year round now. Here, have a look at this picture below and then tell me how can we go out for a 'picnic' at the park to enjoy the 'fresh' air.




Malls. They are places which sell everything from nail clippers to crook-locks for cars. They have spas, nail spas, slimming centres, cinemas, furniture outlets, hair saloons, gyms and supermarkets (which sell raw food too!). Some even have clinics in them. Not forgetting pet shops! Oh and yes, how could I not mention this. Eateries. They are EVERYWHERE! We Malaysians love to eat. It is second nature to us. Food ranging from Chinese to fast food to Western to Indian to many, many, MANY more.

So what point am I trying to drive home today, you asked? Imagine the smell each and every mall has. The onslaught of perfumes, food smells, and chemicals all mixed up in one lethal combination. Even a person with a non-smelling nose would be able to smell it. Smells so pungent that it could cover the smell of rotting corpses!

Let me paint for you the smells that are in malls the moment you step into one.

The air in the parking lot itself would be filled with the smell of petrol. You will also smell the smell of deep-fried recycled oil blasting from the vents above. And nicotine from smokers  hanging out at the parking lots. And then when you walk into the lobby, one would be blasted with fragrance from the air fresheners trying to mask the smell of petrol and deep-fried-oil which had seeped in. Once you are inside the mall, there will be MORE fragrance coming from each and every shop (in an attempt to lure customers into their nice-smelling shops), perfume wafting from the perfume shop; new plastic smells from shops which sells things that are made of plastic; chemical, paint and industrial smells from the vacant shop lots which are undergoing major renovations; incense from the incense shop; food smell of all kinds and last but not least powerful, cleaning detergents from the restrooms. AND air-fresherners too!

On top of all these smells, there are air cons that do not function properly. Many are blocked with dust and grime. And I can smell the musty smells that are emitting from the air-cons and sometimes even mold.

Going to malls is equivalent to walking into a 'fragrance-induced-nuclear-bomb'. Patrons are bombarded by fragrance, ordour, chemical smells of all kinds and food smells. A combination of these smells can make a well person quite sick. And end up in anaphylactic shock for people like me. Oh did I forget to mention the perfumes, colognes, hair-creams, clothing detergents and softeners that waft pass me all the time?

And outside the malls we have 'The Haze'.

My ENT shared with me that he has a patient who is a Caucasian female living in Malaysia who upon breathing in the smell of seafood dropped dead from an anaphactic attack. And the market was about 500 meters away! She was lucky that her husband was with her. He jabbed her with the Epi-Pen and rushed her to the hospital. She survived. All by breathing in something she could not smell.

So we wonder why Malaysians are falling sick more than often. Why children's asthma is on the rise. Why allergies are on the rise. Why a lot of people are constantly bugged by the 'allergy-cough'. Why we have sinusitis.

I say it's the hazards of smells!







Sunday, 25 March 2012

NO HOME-COOKED FOOD!

(Even if I am weak with hunger, and starving to death!)

Joel had his school's cross country run yesterday. He had loads of fun and really enjoyed the run. And he wished that it was held every month!

Though he did not win, he was among the top 20 and as a reward, I took him to eat his favourite food. Which is PIZZA, of course! The usual pizza joint that we frequent was located at the other side of the mall and the air in that area was 'soaked' with lacquer, fresh paint, spirit, glue and chemical fumes because of a huge renovation going on. Smells that would definitely trigger an anaphylactic shock for me. And it was only the both of us. Hubby had gone outstation for work. Definitely could not take any risks!

I have never been told 'NO' to consuming my own home-cooked meal at restaurants after I had explained to the manager/owner of my life-threatening sensitivities. And I always tell them that the food is 'halal' (which means no pork, because of Muslim patrons). But this pizza parlor would not allow it. Even after going into lengthy explanation. I seriously wanted to leave but decided against it as I had to go through the 'danger zone' to reach to the other outlet. 

When Joel's pizza arrived, my brain started screaming loud sirens the moment the smell entered my nostrils. I quickly wore my masks. And the one-kind-vibes that were emanating from the people who worked there were palpable! I ignored the vibes and started to write this post. HAH!

My one-million-dollar question to all the people like me, who are mothers or fathers to young children is this: How do you handle outings with your family (who are normal and healthy with no sensitivities whatsoever)? How do you have meals with your families in the eateries out there? 

Trust me, majority of Malaysians haven't the faintest clue what anaphylaxis, MCS, smell sensitivity or salicylate is. Some are not even aware of allergies! The general surgeon who performed an emergency appendectomy on me told me that it was ok to give me painkillers in small doses even though I had told him that I was allergic to painkillers! And when I woke up from the GA, struggling to breathe and with an accelerated heart-rate, the anesthetist told me that I was having side-effects from the GA which was manifesting in the form of nightmares and couldn't wait to kick me out of the post-operation waiting bay. She was irritated beyond words. And these are doctors!! What more the lay people.

I can hardly find even one dish in eating places in Malaysia that do not contain preservatives, flavorings, additives, colourings, and MSG. Even in organic shops, the sauces that they use contain salicylate. And many places serve overnight food. Outside food is definitely a big NO for me! And don't get me started on the smells!!!!! That will be another post. 

Maybe I need to be 'friends' with owners who own 'non-smelly' eateries, who cook 'un-smelly' food and who only welcome 'smell-free' customers! I think such a place would only exist in space!




Friday, 23 March 2012

Epi-Pens in Malaysia (An Update)

So I finally got a doctor who is from a company who orders the Epi-Pens in bulk directly from MERCK to keep in their airplanes. For NOW, I can obtain new Epis. I spoke to a lady who is the one who deals with MERCK and apparently MERCK was the one who brought the Epi-Pens into Malaysia. Because of low-demand, they discontinued. And now they have brought them in again BUT we have to wait for more than a month to get our refills. Why the long wait? So explain to me how can I survive IF (GOD FORBID) at any point of time I use up my two pens and yet have to wait for more than a month for my refills?

Anaphylaxis is no small matter. It is a life-threatening situation which require quick administration of Epi-Pen to save lives! I have been told to 'try not to fall sick' during this period of time! Oh my God! My emotions are numb.

Mine is expiring in June so I have some time. My son's Epi Pen has expired a long time ago and I have yet to get hold of any!

The hospitals that I have contacted have said that they do not have stock. The one that has stock has the same expiry dates as mine. And they only have TWO! And I was told it could have been 'booked' by another patient!

I appeal to the Ministry of Health to look into this matter. This is a matter of life and death for people like me. Not everybody can go overseas to buy them. And hospitals need to have non-expired stock in their pharmacy! At all times!



Thursday, 22 March 2012

Epi-Pens Distribution in Malaysia Discontinued

Dear MERCK,

I am a 34 year old female who met death 3 years ago due to an anaphylactic reaction. Suffice to say, the Epi-Pen saved my life. In fact, it saved my life TWICE, as I had ANOTHER anaphylactic shock months down the road.

The very disturbing thing is that I have found out that there are currently NO distributors for the Epi-Pen in Malaysia. I have been scouring clinics, asking doctors to help me look high and low for Epi-Pens, asking pharmacists to look for ways to obtain the Epi-Pen to no avail. Apparently the sales of Epi-Pens in Malaysia is low and with its short life-span, no one wants to be the distributor. So my question to you MERCK, is why can't you bypass the distributors, go directly and sell them to hospitals. There are hospitals which DO NOT have Epi-Pens in stock. I know this because I went to the pharmacy and asked them.  A student of an ex-colleague of mine had to go all the way to Australia to get her Epi-Pens! And this was in November 2011! It is sad that there is a huge MERCK company in Malaysia and yet people have to go all the way to Australia to buy their Epi-Pens.

So today, I finally found one hospital who said that they could help me. Don't smile so fast. Here is the catch. I have to wait for more than one month for my order to arrive!

Let me illustrate a situation for you. If a new patient with anaphylaxis winds up in hospital and with all the luck in the whole universe, manages to survive and gets discharged but has to wait for more than one month for an Epi-Pen. How is this person equipped to deal with another anaphylaxis attack?! It is equivalent to sending a soldier into the battle fields with no armour. So if I get another anaphylactic attack and use up my Epi-Pens, I have to wait for more than a month to get my refill?! Where is the logic in that? It is equivalent to sending me to my death. I was even told by a pharmacist to 'try to rush to the nearest hospital as fast as possible!' I had thought that my hearing had gone wrong for that moment. Rush to the hospital? By the time I reach the hospital, I would be ready to be buried six feet under! I am sure that you MERCK understand what an anaphylaxis is since you are selling the Epi-Pens. Right?

Now MERCK, I noticed that that your motto is 'Be Well'. How can I be alive, what more well, if I cannot have my Epi-Pens with me, ensuring that I have time to rush to the ER to be saved. The Epi-Pen was invented to give people time to rush to the hospital to be saved. Before the Epi-Pen was invented, there was no chance for a person with anaphylaxis. You know that.

I saw this on your website and I will quote it here.

'We try to remember that the medicine is for the patient. We try never to forget that medicine is for the people. It is not for the profits. The profits follow, and if we remember that, they have never failed to appear. The better we have remembered that, the larger they have been.'
George W. Merck, December 1950
President of MERCK 1925 - 1950
Chairman of MERCK 1949 - 1957

So MERCK, resolve this issue ASAP. People like me need our EPi-Pens to ensure our survival.  




Anaphylaxis - An Introduction

What Anaphylaxis Is

I have been asked what anaphylaxis is one too many times. Before I had an anaphylaxis attack, I too did not know the term 'anaphylaxis'. I only knew that people could die from allergy, but never knew the 'how' of it. Until I experienced it myself. 


What is anaphylaxis? Anaphylaxis is a fast moving hypersensitivity reaction that can either lead to death either by circulatory collapse (shock) or by obstruction of a person's airway. Click here for more information.The term comes from the Greek words ἀνά ana, against, and φύλαξις phylaxis, protection. (See here)


Many times people think anaphylaxis is a result of an allergy reaction. The thing is there are people who go through all sorts of blood tests and have results which are negative and yet experience anaphylaxis. I am one of those who fall in this category. People like me are categorized under the term idiopathic anaphylaxis. The term idiopathic is an adjective used primarily in medicine meaning arising spontaneously or from an obscure or unknown cause. From Greek ἴδιος, idios (one's own) + πάθος, pathos (suffering), it means approximately "a disease of its own kind". A doctor I once saw told me that today's medical technology is not advanced enough to find out what is wrong with people like me! Tests like these do not exist!


Signs & Symptoms of Anaphylaxis


Anaphylaxis can present itself in a wide range of symptoms. Anaphylaxis can happen within seconds or minutes or even hours later after exposure. It is important to know that anaphylaxis can happen anytime!

Below are some of the symptoms:


* Abdominal pain or cramps
* Abnormal (high-pitched) breathing sounds (also known as stridor)
* Anxiety
* Confusion
* Cough
* Diarrhea
* Difficulty breathing
* Difficulty swallowing
* Fainting, light-headedness, dizziness
* Hives, itchiness
* Nasal congestion
* Nausea, vomiting
* Palpitations
* Skin redness
* Slurred speech
* Wheezing


Signs of anaphylaxis:


* Abnormal heart rhythm (arrhythmia)
* Fluid in the lungs (pulmonary edema)
* Hives
* Low blood pressure
* Mental confusion
* Rapid pulse
* Skin that is blue from lack of oxygen or pale from shock
* Swelling of the eyes or face
* Weakness
* Wheezing


Causes of Anaphylaxis


Anything could cause anaphylaxis! It can occur as a response to almost any foreign substance. Common triggers include venom from insect bites or stings, foods and medication. Less common causes include: physical factors, biological agents such as semen, latex, hormonal changes, food additives such as monosodium glutamate and food colors, and topical medications. Physical factors such as exercise (known as exercise-induced anaphylaxis) or temperature (either hot or cold) may also act as triggers through their direct effects on mast cells. Exercise induced events are frequently associated with the ingestion of certain foods. During anesthesia, neuromuscular blocking agents, antibiotics, and latex are the most common causes.The cause remains unknown in 32-50% of cases, referred to as "idiopathic anaphylaxis". (see here)


Our Saviour


Adrenaline (epinephrine) seems to be the only emergency treatment of anaphylaxis. Carry yours with you wherever you go. I have my Epi-Pen with me all the time!





Wednesday, 21 March 2012

Wants & Have

We always want what we don't have
And yet many of us have what we do not want.

Those who have all of their wants fulfilled
Are those who actually have nothing.

Those who have little wants
Are those who have much

Those who say that they do not want anything at all
Are those who secretly want everything and all

Those whose wants that are always on their mind
Are those who have much to loose

And those who are contented with what they have
And want of things the eyes cannot see nor be measured
These people are wanted
For they are indeed rare
They have everything and want not!


Monday, 19 March 2012

Of Balloons, Paragliders, LED Lights & Fireworks! (Part 3)

17th March 2012 - Saturday

We had never gone for the fireworks show at the hot air balloon fiesta. We felt that Joel would be really thrilled with the spectacular show. And it was worth the almost 3-hour wait!

We came across some paragliders gliding during early in the evening. And they put on a great show. (Though at one point I had thought that one of them was going to crash into the tree behind us! Haha!!)









Perfect landing!






Patiently waiting for the fireworks!





video
video

Here are some snapshots that I took while we were up in the tethered balloon ride!



That was how high we went!
The tethered rides!

Some snapshots from last year!







The 'force' was with us!











The clown that got away!
The 'force' no longer!