The Life That We Go Through (With IA)

We had a new member who joined our Idiopathic Anaphylaxis support group last month. This is Candace's reply to her e-mail. (Candace has given me permission to share this here). Hopefully by reading this, you would 'develope' some empathy and understand that nobody wants to be 'sick' and that Idiopathic Anaphylaxis is not some imaginary sickness. And we are certainly NOT crazy!

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Welcome to the club that no one wants to belong to. 

Most of us in this group are diagnosed with "Idiopathic Anaphylaxis," which means that we can have anaphylaxis for a variety of reason -- not all of them "allergic" -- or for no reason at all. Some of us have food or environmental allergies, but those, alone, are not enough to account for all of our attacks. Some of us have the symptoms of mast cell degranulation (for example, diarrhea, hyperacidity in stomach, hives or swelling) on a daily basis -- even if we don't progress to full-blown anaphylaxis. 

Some of us just have an occasional, discrete episode of anaphylaxis, and carrying an EpiPen (or two) at all times is enough. But for others of us, it may take lots of meds to control our attacks. I've had IA for 40 years now -- in fact, I have had it longer than it's been a disease! <grin> In my case, i need a regimen of daily medications to keep me from having anaphylaxis. 

Two uncommon medications that really help many of us are:

Gastrocrom (sodium cromolyn), which is a mast cell stabilizer. Taken daily, it can really help, especially those of us given to severe GI symptoms.

Ketotifen, a first generation H1 antihistamine that has strong mast cell-stabilizing properties. It is not available in the US, but with a doctor's prescription, we can get it from Canada or another country. Taking between 2 and 8 mg per day of Ketotifen has stabilized many of us.

Also, being on a leukotriene inhibitor, like Zyflo, Singulair or Accolate, can help to stabilize us. And taking daily H2 antihistamines (Zantac, Pepcid) can help with the stomach hyperacidity that many of us are prone to. 

How much medication, and what kinds, that are needed to suppress your attacks varies from person to person. I tend to take a _lot_ of meds, and so I'm a fairly extreme example. My daily regiment, right now, consists of:

12 ampoules of Gastrocrom (mixed with water)

4 mg of Ketotifen

2400 mg of Zyflo

20 mg of Chlorpheniramine Maleate (12 of that at bedtime in extended release form), another 1st generation antihistamine with mast cell-stabilizing properties

100 mg of Atarax (another old H1 antihistamine that's good for skin reactions, like hives)

600 mg of Zantac (ranitidine)

With all that in me, I'm fairly stable as long as I'm in an environment that doesn't contain things that are known triggers for me. In my case that includes, raw cut onion, burnt toast, fresh asphalt, artificial scents or perfumes, and a bunch of other odd things I've managed to suss out over the years.

In my case, if they do skin testing, I react to everything in the world (except oak trees?!?), but on RAST (blood testing for antibodies) I show no allergy to anything at all. I asked my IA specialist what this meant, and he said, "It means that you're broken!" In other words, folks with IA do not follow the rules that folks with "normal" allergies follow. 

There are folks at Brigham and Women's Hospital in Boston (Drs. Mariana Castells, Cem Akin, and Richard Horan) who really understand this kind of disease. Seeing one of them could help you, and they are usually good about doing telephone consults with a local doctor to help figure out how to get your attacks under control.

I am living proof that one can live a good, long time with this disease (I've met two other women who've had it even longer than me). It's important to avoid anaphylaxis, because there can be a kind of snowball attack: The more attacks you have, the easier it becomes to have another. So, the most important job right now is to get the attacks under control. (Also, anaphylaxis is extremely hard on your heart.)

You might find some of the articles on my website, the IA Information Center, to be helpful. You can access it athttp://www.iainfoct.com or http://www.mastcellhell.com. Also, according to the medical literature, about 50% of people with IA go into remission after a time -- so if you're lucky, you may get over this as mysteriously as you came down with it. But in the meantime, you need to control your attacks.

I hope that something in what I have written is helpful to you,

--Candace

Home-Made Granola Bars

The usual granola bars are packed with nuts and dried fruits. Being a salicylate sensitive person, nuts and dried fruits are out of the question. Below, is my own healthy, home-made granola bars recipe.

Ingredients:

1. 2 cups of organic rolled oats
2. 1 cup of quinoa
3. 2 tablespoons of soft, brown sugar
4. 1 cup of home-made sugar syrup
5. 1 egg
6. 1 teaspoon of baking soda
7. 1 cup of sunflower oil

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1. Pour the rolled oats, quinoa, soft brown sugar, baking soda into a large bowl. Mix them thoroughly.

2. In another bowl, pour the sunflower oil and egg together and whisk until thoroughly mixed.

3. Pour the liquid concoction onto the dry ingredients and mix thoroughly.

4. Preheat oven at 190C.

5. Pour the mixture into a baking pan.

6. Drizzle the home-made sugar syrup onto the mixture.

7. Bake for about 1/2 hour or until golden brown.

8. Once it is cooled, cut the whole chunk into bars.

9. Serve with warm drink.

Bon appétit!

Oat and quinoa granola bars!

Pre-Menopause

For the past few months I have been asking myself, my husband and my parents to whether I could be experiencing menopause.

I have been staining very frequently.

Periods have been erratic.

PMS had gotten worse.

I have been extremely, extremely, extremely shitty a week before the period arrives.

I have severely, crazy mood swings.

I cannot sleep for 2 weeks before the periods come. 

Periods have extended to almost 2 weeks.

The hormonal migraine which I had only experienced when I first had my period 30 years ago and when I was on extensive hormones when I was pregnant with Joel had become a constant companion EVERY MONTH! And the migraines can last for 2 weeks when in fact I had been VERY obedient with my diet and lifestyle where salicylates are concerned.  

I have hot flushes and would be drenched in an air-con room where everybody is shivering.

I have had to go to the toilet almost after every meal. The bowels have been very sensitive and disruptive even on a salicylate-free diet.

So when the results from the gynacologist arrived and when I saw 'PRE-MENOPAUSE' in bold, I wasn't really surprised. 

But I'm only 35.

And I am a person who has Idiopathic Anaphylaxis, who is salicylate sensitive and who has not taken synthetic stuff for almost 4 years now. 

I wonder what will happen if the day arises where I will need hormone replacement therapy...

If you are in the same boat as I am in, do share your survival tips with me!

100% Home-Made Pumpkin+Potato Soup

Ingredients:

1. 1 large pumpkin (cut into cubes)
2. 3 large potatoes (skin removed and sliced into cubes)
3. 4 tablespoons of butter (softened at room temperature)
4. 3 big onions (sliced into thin slices)
5. 1/2 bulb garlic (outer layer removed)
6. 2 cups of chicken broth
7. Sea-salt
8. Sunflower oil

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1. Heat a wok/frying pan.

2. Drizzle some sunflower oil into the wok/frying pan.

3. Add the pumpkin, potatoes, big onions and garlic and stir-fry for about 5 minutes.

4. Close the wok/frying pan with a lid and allow to simmer until potatoes soften.

5. Once the potatoes have softened, pour the mixture into a blender/food processor. Add the 2 cups of chicken broth and blend until everything is well blended.

6. Pour the blended mixture back into the pot and allow to boil. Add the butter and sea-salt.

7. Simmer for about 10 minutes.

8. Serve the soup with some buns or bread.

Bon appétit!

The Perfect 'Instant' Egg Dish!

Ingredients:

1. 5 hard-boiled eggs
2. Sea-salt
3. Sunflower oil

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1. Boil 5 eggs with their shells intact.

2. Once they are cooked, soak them in room temperature water.

3. Once they have cooled down, peel the shells and place them in a bowl.

4. Break them and mash them with a fork.

5. Add sea-salt and sunflower oil to taste.

6. Serve with bread or with rice.

Bon appétit!

Totally yummy-li-cious!!

Container Garden - A Drowning Update

Rain. Everyday. Let me rephrase that. Storms. Every single day. Howling winds. Torrential downpours. Hence, the garden drowned and died.

Look at all the WEEDS!!

I have my very own special escargot farm right at my doorstep! HAHA!

Planted these spring onions for my mom. She loves them!

I found these round, crunchy spheres in the garden. I knew they were eggs but did not know whose eggs  they were. And I had goosebumps thinking that it could be some reptile lurking somewhere in the pots! HAHA! I crushed all of them with the spade not knowing that there was another group of them in another pot. Below are the 'creatures' that emerged from the eggs! 

JUNIOR ESCARGOTS! Oh my God!

I planted some organic leeks cutting and they started growing overnight. I hope they will survive and thrive. I placed this pot under the shade.

Waterlogged everyday after the storms. Nothing can survive... It's 'close shop time' for the garden. We'll see you next year!

Well, everything is 'closed shop' except for these two!!! Joel called them the 'Wedding Snails'! LOL!

And of course, Terry the Toad!

Stir-Fried Minced Chicken With Chayote

Ingredients:

1. 500gm of minced chicken (marinate with sunflower oil and sea-salt)
2. 1 chayote (skin peeled and sliced into thin slices)
3. 1/2 bulb of garlic (sliced into thin slices)
4. Sunflower oil
5. Sea-salt

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1. Heat a wok/frying pan.

2. Pour about 3 tablespoons of sunflower oil onto the wok/frying pan.

3. Add the garlic to the wok and fry until garlic turns slightly browned.

4. Add the minced chicken and cook until 90% cooked.

5. Break the minced chicken into tiny pieces and add the chayote.

6. Cover the wok/frying pan with a lid for about 5 minutes to until chayote is softened.

7. Add some sea-salt to taste and mix the dish thoroughly.

8. Once the chayote is softened, scoop the dish up onto a serving dish.

9. Serve hot with rice.

Bon appétit!

Chayote

Sliced into thin slices

Stir-fried chayote dish

*Chayote is low in salicylate.

Mediterranean Rice

Ingredients:

1. 4 cups of uncooked sushi rice
2. 2 big onions (outer layer removed and sliced into half)
3. 1 bulb of washed garlic (outer layer intact and broken into cloves)
4. 2 moderate sized carrots (peeled and cut into dices)
5. 2 cups of chicken stock/broth
6. Sea-salt
7. 60gm of butter (melted)
8. 2 tablespoons of butter
9. 1/4 cup of water
10. 2 tablespoons of sunflower oil

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1. Wash the rice.

2. Pour the rice into a large pot.

3. Add carrots, garlic, cut onions and sea-salt. Mix all the ingredients together thoroughly.

4. Pour the 2 cups of chicken stock/broth and 1/4 cup of water.

5. Add the melted butter, sunflower oil and stir until all blended well.

6. Boil the rice at high heat for 16 minutes and then 13 minutes on low heat until all liquid has been absorbed and rice is fluffy.

7. Serve hot.

Bon appétit!

You can eat it on its own or serve it with other dishes. I served the rice with chicken stew and stir-fried nai pak veggie.

The Monsoon Season That Came One Month Early

We have been having storms EVERY SINGLE DAY!

It can be freaking hot with bright, clear skies in the morning. But by 11 am or 12 noon, you can see the storm brewing on the horizon. 

I have been driving in lashing rains, with extremely poor visibility every single day. We have been stuck in 1 hour plus long traffic jams. I even tried detouring as we were stuck in a standstill traffic jam as the flood was so bad that no car could pass. Not even lorries. I ended driving into a wrong lane on the OPPOSITE direction in the rain!!!

Joel said this to me, 'Mommie, even though I am not driving the car, I am extremely stressed out sitting at the back here!' 

It was very stressful as we had to even drive through flash floods. I really am very grateful to be driving a four-wheel drive. I am VERY thankful to have discovered WAZE, which is a GPS system. Yesterday, we took a road which I had only used once, back in March. I roughly remembered the road but in the rain, and with some road closures, WAZE was indeed a comfort.

The river which is next to the road to Joel's school rose to a very scary level. It has not risen to this level at all.

Thus, we stayed at home today. And yes, the lashing storm came again today and I was very glad that we were not on the road. Besides, my blood pressure was low in the afternoon and I sort of collapsed on the bed and fell into a drowning sleep. Joel was amazing, played by himself and as usual build his inventions and told stories. 

The current was very strong and fast. We could see the rubbish flowing along at great speed. And many tall trees which were at the bank of the river were all submerged. Only the tip of the top leaves were visible.

The river looking very ominous!

I felt like the river was going to burst onto the road and sweep us away! Definitely too many Hollywood movies! Haha!

Click here to read more about our current monsoon season. We were caught in two of the flash floods that happened yesterday.

The Little Engine

Little Engine had gotten its engine fixed. It also had brand new spanking tires and a body wax that shone 'till one could use it as a mirror! Little Engine was pleased that it could now resume its journey.  

Little Engine revved up its brand new engine and was all ready to go. And as the Little Engine stepped on the accelerator, it slammed on its brakes. 

'Where should I go?'

Oh my God!!!

'I do not know where to go!!!!!'

Little Engine switched off its engine and went deep into thought.

'I could go to the sea to play with the dolphins.' 

'Or I could go to the mountains to enjoy the fresh, mountain air.'

'Better still, I could be in the fields of gold and enjoy the beautiful sunset.'

Little Engine decided to Waze to find out which roads were the best roads to take. But as Little Engine started to Waze, it realized that it did not know where to go... 

Little Engine was stumped. Even with a brand new engine, it was heading no where...

A Halloween Fried Rice!

I was too tired to blog last night and here I am one day late! Oh well, better late than never.

A few days before Halloween, I did a Halloween pumpkin fried rice for Joel.

Here's the recipe:

Ingredients:

1. 1 pumpkin (Mine was from the garden and it wasn't very big. You can also use a big pumpkin.)
2. 4 cups sushi rice (Cooked on the day before and kept in the freezer)
3. 6 home-made chick-pea patties
4. Sunflower oil
5. 1/2 bulb of garlic
6. Sea-salt

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1. First of all, cut off the top of the pumpkin so that it looks like a little pot with a lid.

2. Then put this in the oven and bake for about 20 minutes at 200C. Bear in mind that the top part will be cooked faster and you would need to take it out from the oven after 10 minutes. (Make sure that the 'handle' of the pumpkin lid is facing upwards. Refer to the picture below)

3. Once it has soften, scoop out the pumpkin and set aside in a bowl.

4. Set aside the pumpkin.

5. Heat up a wok/frying pan.

6. Slice the 1/2 bulb of garlic into thin slices.

7. Drizzle some sunflower oil onto the heated wok/frying pan.

8. Throw the garlic in and fry until slightly browned.

9. Mash the home-made chick-pea patties until they resemble bread crumbs.

10. Pour the chick-pea crumbs into the wok/frying pan and fry until fragrant.

11. Add the rice and the scooped-out-pumpkin-meat and mix all ingredients thoroughly.

12. Add sea-salt to taste. Continue frying for about 5 minutes.

13. Scoop the rice into the pumpkin and close the lid.

14. Serve warm.

Bon appétit!

Yes, my pumpkin did not look scary at all! I totally suck at carving. I should have asked Miss MCS for some tips!!!

The little young man totally enjoyed his dinner and told me that this was the best dinner EVER! That made my day. The hard work was worth it.