Just For Laughs (28)

Yes, we all would like to tell Death, "Not today!"

*picture taken from HERE

Just For Laughs (27)

*picture taken from HERE

Onward, Forward, No Looking Back

I went back to see Dr. Yadav two weeks after I first saw him in April. My results came back negative. I did not have cockroach allergy. He also tested for dust mites and all of them came back negative. My IgE was also at its lowest ever in history: 15. His conclusion was that I was 'extra-sensitive' to the bites. Usually people take about 2 months to overcome this kind of bites. It took me 7 months.

Dr. Yadav said that I've gotten very much stronger and that it was time to wean off Xyzal. I told him that I've attempted to do that many times but it has always failed. He adviced me to taper off slowly. In the past, I've attempted that but somehow no matter how I tried, it always failed. One day of no Xyzal would result in such terrible itching that I would immediately take Xyzal again to stop the maddening itch. I had even tapered from 2 tablets to 1/4 over the course of almost a year and yet I couldn't wean off it. The 'attack of the itch' was so relentless.

Dr. Yadav was worried about how it would affect my liver and kidneys as 8 years is a long, long time to be on Xyzal. No matter how 'safe' the doctors and pharmaceutical industry claim it to be, it is still medication. The liver and kidneys still need to work hard to detoxify. Add Nexium (PPI) (20 years) to the list and my system has been flooded with a very 'toxic' concoction.

This was further confirmed by the new gastro guy that I have to wean off PPIs and only use it when GERD strikes. 20 years is too long a time to be on PPIs. The damage it can cause to the liver, kidneys and bones is terrible. I'm 'lucky' that I am still fine. I hope that I will be fine until the day I die.

What new gastro said made sense but I needed to experiment to see whether he was right in his diagnosis. I became more aware of the FODMAP food that I put in my mouth. I kept a food diary once again and noted down all the reactions concerning my gut.

22nd of May 2017 was the day I stopped the PPI. New gastro guy had switched me to Controlloc for two weeks earlier and it still did not give me relief where reflux was concerned. I avoided all food with FODMAP. And I began scrutinising what I ate.

It suddenly dawned on me what was causing the 'gastric-like' pain and gassiness.

BROWN RICE.

I knew that brown rice gave me indigestion when I ate it. But when I went gluten-free 2 years back to heal my stomach, I substituted white rice flour with brown rice flour which I ground myself with the TMX. Brown rice is supposed to be healthier! New gastro guy also did share with me that he had one patient who had diarrhoea for many years a few times a day. He had placed him on FODMAP diet but yet he did not get any better. He went through the old man's food diary and told him to stop brown rice. He was well for the first time in so many years. No more diarrhoea. He could eat whatever he wanted, do whatever he wanted and go wherever he wanted! Brown rice is allowed on the FODMAP diet but yet the old man could not take it. New gastro guy said that each and every one of us is different. We need to experiment what works for us.

The pain, gassiness and IBS symptoms disappeared the moment I stopped using the brown rice flour for my baking. The stomach was so quiet. I adhered to the FODMAP diet. Even without PPIs, I did not have reflux. This meant that new gastro guy's theory was right!

I cut my Xyzal into half and was on half dose since April. On the 31st of May 2017, I stopped my Xyzal. This was actually by accident. I was so busy that I had forgotten to take it. And then 1 1/2 days later, I realised that I wasn't itching. Usually before one day was over, I would be in severe, antagonizing itch.

Don't believe me how bad it can get?

Read this LINK.

Zrytec and Xyzal are related. Zrytec is Cetirizine. Xyzal is Levocetirizine.

Click on LINK.

I thought to myself, since I wasn't itching even after 1 1/2 days have passed, why not go on to see whether I could wean off Xyzal?

I stopped eating eggs, prawns and fish as they are high in histamine. I also stopped every experimentation that I was doing and had planned to do during this time. I went back to living 8 years ago - strict with minimal exposure to chemicals and salicylates.

Day 2

Dear God.

My body decided it was time to protest about the absence of Xyzal. And it decided to do so in a very loud and annoying manner. The itch came like a tidal wave. No. Let me rephrase that. It came like a tsunami. The itch was so terrible that I wanted to gauge my eyes out, yank my hair out, scratch my skin until I could reach the insides of the bones. I wanted to dig my organs out. I had one foot inside the boat of insanity. I was going back and forth to my medication box the whole day.

"Should I? Should I not?"

"Should I? Should I not?"

"Should I? Should I not?"

I felt I was being swallowed alive by a pond of thorns.

My son wanted to hug me. I told him not to even touch me even with one strand of his hair. I felt like I was on FIRE. No words can describe the severe itching that one has to go through while going off this drug. Why did no one tell me about this?????

Never in my entire life had I felt this level of desperation. The battle in my mind was intense. I was on the verge of a mental breakdown.

"God, the itch."

"God, I want to die."

"God, I think I can't wean off Xyzal. I think I'm doomed for life."

"God, I've tried so many times and yet I've failed to get off this drug."

"God, I want to die."

"I am defeated."

I had the 'shakings', cold sweat and desperation like a drug addict. I felt ill. Really ill.

And yet my iron will helped me through. I hung on stubbornly and refused to let go. I've never been off Xyzal for two days during these 8 years. Let's see how Day 3 will go.

Day 3

I felt like I was being surrounded by Batman's Joker. I could hear his voice taunting me. I could feel that I was already in the abyss of insanity.

"Dear God, I think I am already dead."

Back and forth whole day again to the medicine box.

"Should I? Should I not?"

"Should I? Should I not?"

"Should I? Should I not?"

"Should I? Should I not?"

"Dear God, just kill me."

"I'm dead."

I took out Xyzal from the medication box and stared at it. I was defeated. I felt so down.

Remember how I said that whenever I was in a dark tunnel, I would always envision light at the end of the tunnel? I couldn't at this point of time. It was just darkness with Joker's laughter echoing on and on all around me. It felt like I was surrounded by insanity.

And then suddenly at about 4pm, a tiny ray of light shone into the dark tunnel.

There was a short window where the itch had actually stopped.

That gave me enough strength to go on.

I slept through that night and it was a very deep and refreshing sleep.

Day 4

The itch continued to torment me. But the intensity had lessened very much. But my mind was going crazy. I kept going to the medicine box as today every atom, nucleus and fibre in my being were screaming,

"WE WANT XYZAL!"

I felt this severe craving for it. Like a pregnant woman with a severe pica. Everything in me was crying out loud for Xyzal.

But the itch was subsiding and I even had 2 hours plus itch-free. That was a very good sign indeed. I needed to reign in my mind and tell myself that I can do this and it will soon be over. I kept on seeing the light at the end of the tunnel.

The body started breaking out in boils at random places. My ear lobes, my scalp, my feet were breaking out in boils. Ulcers too started popping up on the tonsils, at the tip of the tongue and many places in the mouth.

Honestly, I'm drained emotionally and mentally.

We shall see how Day 5 shall go. Keeping fingers crossed.

(...to be continued)

The beginning of this journey: 1000 Kilometres and Candida

The second part of this journey: Candida & Dr. Yadav

The third part of this journey: Pain & Rock Star No More (Part One)

The fourth part of this journey: Pain & Rock Star No More (Part Two)

The fifth part of this journey: The New Hell Called Steroids!

The New Hell Called Steroids!

Prednisolone is a monster even though it is a gift-from-heaven where inflammation is concerned. When I was on steroids 8 years ago, the side effects were A.W.F.U.L. That word is actually an understatement. It is the devil in its truest form.

My mouth began to develope a metallic taste. It felt as though my saliva glands were producing some foreign liquid. My sense of smell heightened 100%. Every single smell became so glaringly strong. I had nightmares the first night itself. My skin 'glowed' with the 'steroids glow'. Every single bite from mosquitoes and the bug-bites-from-November's-holiday vanished. The 'steroidal-migraine' arrived with a loud bang. Bowel movements became goat-manure-pebble-like. And 'bloated-like-a-balloon' was how I looked. My mood became PMS+menopause = deranged woman. I felt like the dragons that Daenerys Targaryen owned in Game of Thrones: always breathing out fire. I felt I was the three dragons combined. The heat that I felt on the insides was terrible. Hubby and son said they could feel the heat emanating out by just sitting next to me. 

BUT.......

On the third day, I started to have short pockets of relief from the pain. As the days went by, the pockets of relief got longer. 

Many times in life, shit happens. And SHIT happened. 

Hubby had to go for an emergency surgery as he had a very badly infected abscess to the point he could not move. And the abscess was at the inner thigh. 

The next day after the surgery.

My plan to rest and take it easy during this period of steroids just vanished into thin air. I had to take over everything as hubby was immobilised and was in so much pain after the surgery. He couldn't sit. Couldn't walk. And I had to bring him to the hospital during the first few days to change his dressing. After that I had to take over cleaning and bandaging his wound! It was his turn to look like a ghost as a result of the pain. Everything fell on my shoulders. It was a VERY trying time. But it was a good thing it happened when the pain was slowly diminishing and not when I was paralysed with pain. 

Exhaustion is an understatement to describe how I was feeling. The steroids caused my emotions to go haywire. I always tell myself that at the end of any dark tunnel, there will an opening and that there will be light. It is only a matter of time. I always play that mantra over and over in my head when tough times come. That's how I encourage myself to hang on and to move on. 

Once the two weeks of steroids were over, I went back to see the new gastro for a follow-up appointment. 

He of course was pleased that the pain was gone. He wrote down every single detail of how I felt during the treatment and when the pain started to subside and when it was completely gone. He said I was his first patient in his entire life as a doctor that he treated in this manner. 

We then talked more about my IBS and GERD problems. He very strongly believed that the IBS that I had was mimicking GERD. He believed that I was consuming certain FODMAP foods which were fermenting in my gut thus causing a built-up of gas which forced the acid in my stomach to go up to my esophagus. My duodenum wasn't the culprit anymore. Since it was the case, PPIs would not work at all! What have I been ingesting all these years for then??!!! Why did Rock Star give me so much PPIs when GERD was no longer the case?

He wanted to try another method at the same time. He changed Nexium to Controlloc and put me on it for two weeks. And then I was to see him again and report to him about the developments of my gut. 

Two weeks had passed and yet I was still having reflux issues. He then put me on Dupastalin for two weeks to stop the IBS. I was to see him again in two weeks.

(...to be continued)

The beginning of this journey: 1000 Kilometres and Candida

The second part of this journey: Candida & Dr. Yadav

The third part of this journey: Pain & Rock Star No More (Part One)

The fourth part of this journey: Pain & Rock Star No More (Part Two)

Pain & Rock Star No More (Part Two)

When we walked into the new gastro's office, my heart actually sank. He looked like a strict headmaster. He looked like he had a whip behind his desk and was ready to whip any of his patients who dared to question him.

He asked me about my problem once we were seated. After explaining to him about my pain, the treatments that were administered at the ER on Monday and Wednesday night, the medication that I had been ingesting, he asked me multiple questions. He was very meticulous and very thorough. He asked about my history. He went through all the documents/X-Rays/test results that we had brought. (Many doctors do not do this. They feel that it is a waste of time.) He then told me to lie down on the bed and proceeded to press my abdomen. I almost jumped through the ceiling from the pain. He continued to press on the left side and right side and continued to asked me about where was more painful and to rate the pain to him on a scale of 1 to 10. I told him it was 100!

And then he dropped the million dollar statement.

It wasn't GERD.

It wasn't my stomach.

It was my intestines!

The food poisoning that I had during the time I saw Dr Yadav wasn't over.

WHAT?!!?!

The bacteria that is usually the culprit for such poisoning is Staphylococcal Enteritis. You can click on LINK to read up about it. New gastro guy said that some people do not have the usual 'thunder and lightning' (diarrhoea and vomiting - which I did not have) when they are struck with this bacteria. This bacteria then exudes a toxin. This toxin causes inflammation in the intestines (panniculitis - inflammation of the fatty tissues of the intestines). Thus, the severe pain which I had. My intestines were INFLAMED! The bacteria and its toxin were long gone. But the inflammation that was caused by the toxin could not go away.

And the best drug for this is Ibuprofen. One of my enemies. It's an NSAID. Which I definitely could not have.

He said both his hands were tied and he has never come across a patient like me before.

Thus, the only solution would be PREDNISOLONE.

Yup. Steroids.

2 weeks of steroids.

I wanted to scream FML.

I had no choice.

So steroids it was. 6 tablets to begin with. 30mg for 3 days and then taper to 25mg for 3 days until it would reach 5 mg.

He also said GERD would never, ever, ever, EVER cause such pain like this. That was why Nexium didn't work. He did mention that overuse of Nexium can also cause it to be useless. Then it would be time to switch PPI. Even though all of them are labelled as PPIs, different brands are created differently. And by switching to another brand of PPI, the GERD can be controlled.

BUT, he did say long term of PPIs are not good. GERD is a life-long chronic disease. One must learn to control it and if an attack does happen, go on the PPI for 5 days and then stop.

New gastro also mentioned that many times IBS (Irritable Bowel Syndrome) mimics GERD. And the cause of IBS 99% of the time is caused by FODMAP! I wanted to cry with joy. I told him that I had just blogged about it a few days ago! A doctor who BELIEVES in food intolerance (other than Dr. Yadav that is). He then proceeded and showed us the Monash FODMAP book and also the FODMAP app in his smartphone. I had wanted to buy the app a few months back but that didn't happen.

I was just so excited that I finally found a doctor who believed in food intolerance and sensitivities.

And so the Prednisolone journey began.....

(...to be continued)

The beginning of this journey: 1000 Kilometres and Candida

The second part of this journey: Candida & Dr. Yadav

The third part of this journey: Pain & Rock Star No More (Part One)

Pain & Rock Star No More (Part One)

The pain in the upper middle region of my abdomen was becoming worse as the days went by. It was so excruciating to the point I was swallowing all sorts of gastric medication which I had. And yet the pain did not go away. It got worse and worse. I couldn't eat or sleep. All I could do was curl up in bed and whimper.

I finally succumbed to the pain and went to the ER on a Monday night (10th April) The usual ER doctor who knew my history of reflux and my allergies gave me Nexium (PPI) via IV. Usually it would work after about two hours. This time the pain didn't diminish at all. Imagine having this kind of pain 24-hours non-stop. I told my dad that it felt like like something was clawing from the insides, eating my insides and that there was a huge cavity in my stomach. He said it sounded like Ripley's Aliens. HAHA!

The climax of that night was fantastic. I had parked my car in the basement of the hospital because of the rainy weather. Also the open carpark was full of cars from visitors. When I left, I took the lift as usual. The lift was slow in arriving but I did not give it much thought because I was in so much pain. I entered and pressed B (for basement). The buttons didn't work. As I was about to step out of the lift, the doors closed and down it went. I walked out of the lift and pushed the doors which led to the carpark. Lo and behold, they were LOCKED! I then walked back to the lift, and that was when it dawned on me that the lift wasn't FUNCTIONING! I was trapped. And the best part was that my phone did not have a SIGNAL as I was in the basement!!!!!!! OMG! I could see my car through the glass window of the door. I was so near yet so far. I shouted for help at the top of my voice and banged the door. No one came. I continued doing it until I realised that nobody could hear me. I tried the lift again. I jabbed the buttons furiously hoping that the lift would descend. The lift did not move. I then walked to every part of the area that I was trapped in trying to get a signal with my phone. No signal at all. Tried banging the door AGAIN and screaming for help at the top of my voice. Tried jabbing the lift buttons AGAIN! Walked at every corner of the area that I was trapped in AGAIN! Suddenly, I had SIGNAL on my phone!!!!!!! I called the ER and told them of the predicament that I was in. They got someone to send the lift down. Then only was I told that the lift ceased operating by 10pm. Then why did the lift worked when I used it? No one could answer me. Twilight zone? By the time I got home, it was 11pm.

Tuesday was no different. The pain was as bad. My part-time cleaning ladies said I looked like hell. I HAD to see a gastroenterologist. I knew that if I went to see Dr. Rock Star, I would be sent for a scope again and he would prescribe me PPIs to no end. My last endoscopy and colonoscopy was only over a year back.

Who should I see?

I did not know of any other gastroenterologist. I decided to go to the hospital's website and check out each and every gastroenterologist that worked there. Finally, one caught my eye. One of the conditions that he had treated was food intolerance! Dr. Rock Star doesn't believe in this. He told me I could still eat whatever I wanted even though I told him that certain food caused me to be sick in the stomach. He instead said that I was stressed or filled with anxiety and proceeded to give me PPIs and anti-anxiety/sleeping medication. I called up the hospital and the new gastroenterologist had a slot available on Thursday afternoon! I couldn't wait.

Wednesday evening came, and I was at the ER again. Hubby had to take emergency leave and bring me to the hospital. I couldn't even drive. The usual ER doctor who saw me on Monday stayed back to attend to me even thought his shift was over. Bless him! He said I was so pale looking that I looked like a ghost. This time he IV-ed Nexium and Tramadol (an opioid group painkiller which I could thankfully take). And he did blood tests and sent me for an ultrasound. Everything came back excellent. He said that I had to see a gastroenterologist ASAP. I told him that I would be seeing one the next day.

Thursday finally arrived.

I would be lying if I told you that I wasn't anxious. Would he be like Rock Star? Or even worse than Rock Star?

My heart sank when I walked into his consulting room.....

(...to be continued)


The beginning of this journey: 1000 Kilometres and Candida
The second part of this journey: Candida and Dr. Yadav

The Crippling Pain, The ER Visits & THE Scope (Part 2)

As you can see, I was to drink 1L of the horrible-diesel-tasting-diarrhoea-inducing-drink at 7 pm (and must be finished doing so by 8pm) and ANOTHER 1L at 8pm (and must be finished doing so by 9pm). You will gag drinking this. And this is not an exaggeration. The taste will be in your mouth, nostrils and brain. You will smell and taste it in everything and everywhere. By 9 something, I was already running to the toilet. If you're ever going to go through this procedure, don't even attempt to wear back your undies or walk out of the toilet. You will never make it before the next wave hits. Put a stool or a chair next to the 'throne' and wait for the next wave. You won't have to wait for long, I assure you. There will be times when you will think that you're done. You will be wrong.

The very helpful nurse at the endoscopy department said that we must excrete to the point where the last stage of excrement looks like liquid that resembles a-somewhat-clear-water (pictures 7 and 8 of the diagram below).

I was up until 2am and had arrived at stage 7 by then. Thoroughly exhausted, I scrubbed the throne clean, showered and went to bed.

By 4 something I was up to make the last 1L to drink (which I had to begin drinking at 5am and was to be finished by 6am). I was sorely tempted to not drink that as my excrement was clear at 2am. But I remembered what the nurse told me the day before. I was to finish all three sachets. Obediently, I chugged down the last one liter. Boy, was I glad I did that as the next toilet visits became stage 5 again which finally cleared up by the time I arrived at the hospital at 8.30am. (Another important point: Wear diapers! The morning rush hour is mad and you might not be able to hold it. I managed to hold but ran and dashed to the endoscopy department's toilet. And the nurse who checked my stools said I was good to go!!!! Yippeee! No need another 1L of that drink called death.) We met a woman who did not drink her 5am drink as she thought her bowels were cleaned enough. She had to drink another 1L of that drink while I could go ahead with my scope. The relief that I felt was euphoric. But I felt terrible for her. She looked disgusted at the drink and totally demoralized sitting there.

So I changed into the hospital gown and got ready to be wheeled into the scoping room.

I would be lying if I said that I wasn't nervous or anxious. The colonoscopy is one awfully painful procedure when one is not sedated. My dad said when my mum had hers, she was screaming even though she was sedated. They had to give her another shot of sedation.

As I was wheeled in, I saw Dr. Rockstar preparing a syringe to sedate me!

Me: NO WAY DOCTOR! I am not to be sedated. I don't want another problem added to my stomach problems. I have enough problems as it is. So no, I do not want to take the risk of having an allergy attack which can spiral into an anaphylactic attack.

Dr. Rockstar: Yes lah. Take it lah. It's going to be very painful.

Me: I know. But you'll be gentle. (That was me hinting very directly at him to be gentle. But of course I know that there's no way of him turning the scope at the corners of my intestines without causing pain.)

Dr. Rockstar: I can be gentle but you'll still be in pain.... Well ok. If you're up to it. (Of course, he wasn't too pleased. But I was stubborn and adamant and he could not change my mind.)

And so it began.........

Nurse: (Turns me on my left side and sprays Xylocaine (to numb my throat so that the scope can enter without me vomiting and gagging non-stop. Once my throat was numb, she placed a plastic mouthpiece to keep it open.)

Dr. Rockstar: (As he is about to start the scope, he discovers some buttons/knobs are missing! Turns to one of the nurses and barks.) Where are the buttons/knobs? I WANT ALL OF THEM!

One of them disappears like Speedy Gonzales or the Road Runner and returns with the parts that the doctor had demanded. (Later when I told hubby what had happened, he said that now he knew why the nurse ran out and returned with such speed.)

Dr. Rockstar then proceeds and inserts the scope into my esophagus.

Dr. Rockstar: Ok, let's start. (Realises that he couldn't proceed as the monitor would not light up and he is about to blow again.) Why isn't this working??!

Nurse: (Answers real quick) The station outside has not registered the patient.

Dr. Rockstar: (He sounds like he is about to eat everyone in the room.) HOW NOW? THE SCOPE IS IN THE PATIENT ALREADY! HOW LONG YOU WANT PATIENT TO WAIT? WHY WAS THE PATIENT PUSHED INTO THE ROOM WHEN SHE WASN'T REGISTERED?! HOW NOW?!!!!

Nurse: (In a very timid voice) We have to wait for them to register before we can proceed.

Dr. Rockstar: HOW LONG MUST THE PATIENT WAIT? HOW LONG DO YOU EXPECT THEY PATIENT TO LIE DOWN HERE? CALL THEM!!!!!!

The nurse makes the call and squeaks faster than a speeding bullet train telling the outside counter to speed it up.

Bear in mind that I was awake, hearing all this and I had this tube down my esophagus into my stomach and I had to wait until I was 'registered'. I could hear my heart rate accelerating and felt a panic attack creeping in. I started breathing in and out to calm myself down (sounding somewhat like a Darth Vader squeaking) and grabbed the pillow with my left hand. I also started chanting in my head, 'I CAN DO THIS. I CAN DO THIS. I CAN DO THIS. I CAN DO THIS.......' My heart rate actually started to slow down.

Dr. Rockstar: (Bangs on the keyboard urgently and impatiently.) WHAT'S TAKING THEM SO LONG???!!!!

SUDDENLY, the screen lights up and everything started to work. I shouted Hallelujah in my mind and praised every god that exists. HAHA! (Yes, I can laugh now. But I assure you, I wasn't laughing then.)

Dr. Rockstar proceeds with the endoscopy and completes it in a few minutes.

They then turned me around and prepped me up for the colonoscopy.

I continued to grab the pillow with my left hand and I then grabbed the bed railing with my right hand. And I started chanting 'I CAN DO THIS' in my mind again. The first turn came and I turned my face into the pillow and groaned. I gripped the bed railing so hard that my hand still hurts today. This round I didn't scream the hospital down. Hubby was worried as it was so quiet that he thought I might have passed out! When he found out I didn't pass out and did not scream, he promoted me from 'Woman of Steel' to 'Woman of Titanium'. HAHA!

Finally they arrived at the end of the large colon.

WHEW! The nurse pried my right hand from the railing. I immediately went and grabbed it again. She then told me that the excruciating-intestine-twisting procedure was over. Only then did I slowly let go of the railing.

Now here's the good news. My esophagitis has healed. I have no lesions, no ulcers, no polyps, no tear, no nothing in both upper and lower gastrointestinal section. There's no sign of acid reflux burning my esophagus. The Hpylori test came back negative.

Dr. Rockstar concluded that it was a severe IBS attack which he firmly believes was triggered by stress. (Yes, everything is triggered by stress.) I wasn't stressed. But I remember the gassiness started after eating french beans. And then during the weekend, I had garlic! I love garlic. But garlic is a major trigger for episodes-from-hell for me. DAMN IT! It's healthy food. It's not even cake or ice-cream. It's goddamn GARLIC! G.A.R.L.I.C.

All this stomach-throwing-hissy-fits started after I fell sick two months back. I guess it'll take time and I have to build it back up again.

The pain is still on and off. At least there are bouts of relief now. Last week it was 24-hours of pain.

The horrible-diesel-tasting-diarrhoea-inducing drink triggered some allergy reaction. I was itching and had some red patches here and there. I had to take a Puriton antihistamine on Friday night itself. Everything cleared up the next day.

It's adapting period again. I hope things will get better soon.

The Crippling Pain, The ER Visits & THE Scope (Part 1)

The pain started last Sunday. I had thought that it was my usual (GERD) reflux problem which was acting up again. So I took my usual GERD meds - Nexium, Motilium and some milk of magnesia. There was no relief at all. This time, it became a full-blown attack which had me doubling over in pain. I increased the meds and took a double dose. The pain did not abate. And I was extremely-super-gassy.

By Tuesday I was a slow-moving-hunched-over-shuffling Evelyn. I added Ganaton to the list of meds.

I went to the ER at the hospital which is a stone's throw away from my place on Wednesday. Hubby had to take an emergency leave. When I told the doctor the list of meds I've been ingesting, he said that I was already on the highest range of medication for reflux. The only option left was to IV the medicine into my system. Since I am allergic to painkillers, this was what they could do for me.  He asked me whether I would want to be admitted! They could IV the meds round the clock.

NO WAY!

I went home after they IV-ed the meds. It gave some slight relief.

By nightfall, I could feel the medicines wearing out.

By Thursday, I could not eat more than 2 spoonful of anything. The pain came back with vengeance. And I developed a mild fever. And my stools became loose stools.

What could it be? I don't have an appendix anymore as I had an appendicitis 8 years ago. I just had an MRI done last month which covered my stomach, gallbladder, liver, pancreas, spleen, ovaries, and bladder. All my blood tests were normal.

What was this pain?

Hubby rushed back and brought me to the ER again. This time we went to the hospital where my gastroenterologist works. I actually had an appointment later with my gastroenterologist but the pain was awful and I couldn't wait for the appointment time.

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

The doctor at the ER was a ........... (I'll let you fill in the blanks yourself to whatever names you can think of.)

Below is the conversation between ER doctor and me.

ER Doctor: So what pain is this you're having?

Me: It's my stomach. I have reflux and this pain which started on Sunday will not let up. (I then proceeded to tell him the list of meds that I have taking and the visit to the ER on Wednesday which I had more meds IV-ed into me.) I actually have an appointment later with Dr. Rockstar but I couldn't wait for it as the pain is horrible and I'm having a mild grade fever. Maybe you could page him to come down to see me instead?

ER Doctor: (Chooses to ignore me and looks bored to death and gives me the impression that I am either on a trip to the hospital for fun or I am making all this up just to make this trip to the hospital so that I can contribute to his September salary. He then proceeds to ask me to lie down and started to press my abdomen to pinpoint to where the pain was.)

ER Doctor: (After pressing my abdomen for awhile...) I think it's your kidneys. I think you might have stones. Let's do an urine test. Also, I would like to give you Tramadol for the pain. (Tramadol is a painkiller).

Me: WHAT?! It's my stomach that's hurting. My kidneys are FINE! F.I.N.E!!!!!! I don't want that Tramadol. Anyway, I have an appointment with my gastroenterologist, Mr. Rockstar later. I'll go see him.

ER Doctor: Ok then. (He had such a look of disdain and an air of boredom about him.)

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

Hubby then wheeled me over to Dr. Rockstar's clinic.

When we arrived at his clinic, Dr. Rockstar's assistant asked to why did the ER not page him to go see me? I told them about ER Doctor's wonderful behaviour and superb diagnosis. They just shook their heads.

Dr. Rockstar was actually quite frustrated with me as I have been seeing him for the few months with this same pain in the same area (though the intensity of the pain wasn't this terrible). (That was why he had sent me to have the MRI done last month.) At that time he was worried that it was my pancreas. My grandfather had died of stomach cancer and my dad's cousin died of some stomach ailment screaming in pain in the hospital until he died. Maybe it is some kind of stomach ailment genes in our family. Imagine MY level of frustration when even my doctor is frustrated and perplexed.

Since everything came back fine, we just left it at that last month.

This round, since there was no answer, and the pain was so debilitating and crippling, an endoscopy and colonoscopy was recommended. And I was to have it on Friday morning, (which was yesterday).

The last meal was to be at 6pm and I was not to have any vegetables, fruits, red meat, bread, oats, cereal and etc. And I was to drink this (picture below) horrible-diesel-tasting-diarrhoea-inducing-drink to prepare for the colonoscopy.

(...to be continued.)

Just For Laughs (5)

*picture taken from HERE

The Happening Placebo Glossary

1. Bowel Anaphylaxis

Diarrhoea to the point you feel that your entrails will be expunged at any minute. It's like an exorcism going on, but it is in the bowels. It's like the devil is having a party and is going to rip out everything from inside you.

2.  Multiple Chemical Survivor

You basically cannot tolerate the scent of anything remotely human as they drown themselves in everything chemical. You're a survivor as you survived the catastrophe of humans-all-chemical.

3. Anal-phylaxis

A disease which chooses to be anal at every wrong point of time. It enjoys being a pain-in-the-ass just like how fleas are to dogs and flies are to cows. It just irritates you to no end and causes you to suffer immensely. It wants to kill you. And transform the angel in you to curse and swear like a sailor.

4. The Walking Dead

Everybody (well, almost everybody) in the the world is awesome as they are like the 'Walking Dead'. Shuffling about sniffing for scents of chemicals. Drooling and warbling like gargling infantiles, the 'Walking Dead' shuffles to the next unsuspecting victim and passes on to them the disease of 'Love Thy Neighbour the Chemical.

5. Allergy

A condition that is basically you reacting adversely to stupid people.

An example of a conversation between Miss A and Miss B.

Miss A: There is no such thing as chemical sensitivity.
Miss B: (Starts to suffocate.) Get away from me!!! I'm severely allergic to you!!!!!!

6. Sensitive

A person who is believed to respond to paranormal influences.

'Paranormal' = Relating to the claimed occurrence of an event or perception without scientific explanation.

Example: You becoming ill upon smelling someone's so-very-faint-fragrance-that-it's-like-not-even-there!
YOU are sensitive. It has never been proven that one can become ill from such non-existent smells!!!

7. HYPERSENSITIVE

You becoming ill upon smelling something which is not even there at all.

Example:

You: (Starts to feel the throat tightening.)
Your friend: Stop being so hypersensitive. I didn't use any perfume today. I only used it last night. Don't tell me you can even smell that from last night. You're being overly-hypersensitive.

8. Hives

Miss X: OMG! I'm breaking out in hives!
Miss Z: Don't be stupid. You can't be breaking out in hives. Hives are the bees' nest.

9. Placebo

You're under the effects of Placebo, an English alternative band. Don't believe me? Click on the link http://en.wikipedia.org/wiki/Placebo_(band).

10. Doctors

People who are supposed to work from 9am to 5pm but in reality work from 10-ish or even 11-ish to 2 or 3, make you exercise your bum on those uncomfortable hospital seats for hours and charge you a leg or an arm for poking and prodding your leg and your arm, and then proceed to hem and haw and then send you for unnecessary tests and then give you sweets medicines which you have never heard about and then send you home once you pay them with your arm and leg!

Another Round at the Hospital & A Conversation with Little Miss Doctor!

Yesterday, Joel and I had gotten worse. The never-ending-spiking-fever which he had since Monday night had rose to 104.3F! I, on the other hand felt a cold in my chest and as though weights have been placed on my chest. I felt that it was getting difficult to breathe.

By 9 something in the morning, we went to the hospital. There was the usual long waiting list at Joel's pediatrician's clinic. And the doctor on call at the ER had a patient with a severe, full-blown heart attack! The doctor had to accompany the patient to another hospital in the ambulance as he wasn't stable. This hospital is not equipped to admit such cases. Thus, we had to wait for another doctor to attend to us.

Joel had a blood test and the results showed that he had a bacterial infection! He was placed on a 5-day-antibiotics treatment. He finally slept through last night after waking at every single night from the raging fevers.

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

Finally it was my turn to see the doctor. Here are the excerpts of the conversation:

Little Miss Doctor: You had high fever?

Me: No. I only have low-grade fever. My son has very high fever. It started on Monday night and he is currently still burning. (We haven't received his blood test results at this point of time.)

LMD: Have you had this before?

Me: I don't know what I have now. But both my son and I had Influenze B last month and we fully recovered 2 weeks ago.

LMD: Did you finish your Tamiflu?

Me: I did not take Tamiflu. But my son finished his Tamiflu.

LMD: (In an appalled tone) Why did you not take the Tamiflu????

Me: I have a condition called Idiopathic Anaphylaxis. I basically have no idea what can kill me or save/heal me.

LMD: (In an irritated tone) What drugs are you allergic to?

Me: NSAIDs, painkillers, panadol, aspirin...

LMD: (With eyes as wide as teacup saucers) WHAT??!! PANADOL??!!

Me: Yes, P.A.N.A.D.O.L! (which is basically paracetamol)

LMD: What about antibiotics?

Me: Bactrim. Sometimes I am able to take medications for the first time. The second time round, I have an allergic reaction.

LMD: (Gives me the look as if I am LYING and says in a matronly and condescending tone) Well, since you did not take Tamiflu, you still might be having Influenza B.

Me: But I recovered and was symptom-free for 2 weeks. The raging fever stopped. In fact, I have not had fever since then, until now. I thought our body is able to fight the influenza virus on its own? I know that it takes longer to recover without Tamiflu. What about people who are allergic to Tamiflu? How do they overcome the viral fever then?

LMD: Ignores my questions AND statements, glares at me and barks out orders to the nurse to give a chest X-Ray, swab for Influenza A & B, blood tests.)

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While I was on the sick bed, behind the curtains at the sick bay waiting for my blood to be drawn, I could feel her irritation as she continued to bark out orders to the nurses. I asked the nurse as she drew my blood (and LMD was within earshot) who this doctor was. I even asked whether she was some locum doctor. (She must have been super-pissed when she heard that! I was super-extremely pissed at her!) Apparently she is a full-time doctor at the hospital!

As a person with this truly pain-in-the-ass condition, I cannot understand why doctors think that I am spewing out crap just to make their job difficult. Do you think I enjoy living my life like this???? Whatever happened to being compassionate to your patients? If you don't have compassion and you think you know everything, you're a sad case of a doctor! Your ignorance, stupidity, arrogance and cold-indifferent attitude will kill your patients sooner or later. You should resign and look for another job where human contact is at a minimal.

Ask yourself, who in their right mind would want to go through sickness, by prolonging it and suffering from the maximum effects of not being able to take medication??? I am certainly not one. I have no choice. I could experiment, but could you guarantee that I will not keel over and die (or worse end up in a comatose state!)

To all doctors out there, please think before you judge us. We are no longer in the medieval times where someone who does something or lives out of the ordinary is a witch, whose end is at the stake, to be burned alive. We have advanced. We have knowledge. We are supposed to be smarter. Allergies, sensitivities, anaphylaxis and idiopathic anaphylaxis are real. People like me are real. We exist. Somewhere along the line, our immune system got screwed up. Instead of wasting your time (and mine) asking and making stupid questions and remarks, go and read up and talk to specialists and doctors who are experts in this line.

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

As I was waiting for my results, the usual ER doctor came back! Hallelujah!!!!!! Though he has never met someone like me, he understands and accepts and always tries to accommodate me where treatment and medications are concerned. And he LISTENS! And remembers what I tell him about my condition.

My results showed that I have a severe viral flu. Not influenza (as the swabs both came back negative), but a viral flu. My platelet and white blood cells are so low that the doctor thought that I have dengue! Luckily, the dengue test came back negative! Thank god!

Joel and I have been weakened tremendously by the Influenza B. When I went to the pharmacist to collect my antihistamines and nasal sprays, the pharmacist thought that I had Influenza! I told her that was last month. This month is another viral attack. She told me that many in the hospital were down with the influenza. One of her colleagues had the influenza in October last year. And it takes a few months for the immune system to be back in tip-top condition! And in-between, we will fall sick more than usual! I went, "WHAT??!!! You mean to say that this isn't going to be the last attack????" The thing is, Joel's pediatrician and the nice ER doctor told us the same thing!

Oh my god....

A Conversation With Doctor Zombie

Let me make myself clear before I begin today's post. I HATE hospitals. Totally loathe it. But then when I'm sick, that's the place I head to. I have no choice.

So after collapsing in bed at 10pm on Monday night, I woke up feeling better on Tuesday morning. The flu-ey-ness wasn't there. The raw throat was gone and the sickly feeling had disappeared. It is wonderful what a good night sleep can do to our body.

And then, I noticed the rash that had broken out on my right leg had gotten worse and it had spread overnight. And it was stinging. I have had shingles and I know how painful shingles can be. This wasn't shingles pain. But I became very worried that I had developed something else which could be passed to Joel (and my brother who is still currently very weak and tired from last week's influenza B attack).

Thus I headed to the hospital at 2 pm yesterday to see a physician. I wanted to find out what on earth I had.

So Mr. Physician took a look at my records online and saw that I had a bacterial AND influenza B infection 10 days ago and was given Zithromax, Tamilfu and anti-histamines. I told him that I did not take the Tamiflu as I did not know whether I would react in an anaphylactic reaction or not. That was when the 'conversation' became 'interesting'.

Note: Words in bold, in red and in brackets are MY THOUGHTS!

Mr. Physician: What are you allergic to, exactly?

Me: Salicylates and a .... (I got cut off before I could even finish answering his question) (WHY THE HELL DID HE EVEN BOTHER TO ASK ME?)

Mr. P: Oh, aspirin. Then why can't you take Tamiflu? Tamiflu is not aspirin, you know.

Me: (DUH! As if I can't tell the difference!) I have Idiopathic Anaphylaxis and do not know which medicines can kill me or help/save me.

Mr. P: What can you NOT take? (And gives me the look as if I have grown two devil's horns)

Me: (Actually, I cannot take idiotic doctors who give me idiotic looks as if I haven't the faintest idea of what I'm sensitive to!) Painkillers, NSAIDs, Paracetamol, Bactrim, tests which use dyes, food with colouring, preservative, flavoring, additives, MSG.

Mr. P: (In an appalled tone) WHAT DO YOU EAT THEN???!!!

Me: (My diet consists of brainless doctors. And there are plenty to go around in the Klang Valley alone!) I make, bake, cook everything that I eat. I eat everything fresh.

Mr. P: WHAT KIND OF LIFE IS THAT??!! What quality of life do you have?!!

Me: (My life definitely has a HIGHER quality than yours obviously.) I have adapted, evolved and I am already used to it. I have lived like this for FOUR years now!

Mr. P: (Sputters and at a loss for words) But to reach to the point of anaphylaxis is SERIOUS!!

Me: (YAWN!!! Blah blah blah.... I am so tempted to smack this idiot on his forehead. As if I don't know that anaphylaxis is a serious thing. I almost died. You mean that is not serious???) Of course it is serious! I carry Epi-Pens with me. I have even used them. TWICE!!!

Mr. P: OOHHHH! You know about Epi-Pens! Where did you get yours? Malaysia no longer sells Epi-Pens!

Me: (BREAKS INTO A THUNDEROUS APPLAUSE!!! BRAVO!! 10 POINTS FOR MR. P FOR KNOWING THAT MALAYSIA NO LONGER SELLS EPI-PENS!!!!! CLAPS HANDS ECSTATICALLY! OF COURSE I KNOW ABOUT EPI-PENS! I HAD A.N.A.P.H.Y.L.A.X.I.S!! DUH!!!!!!!!) I order my Epi-Pens through hospitals. I got mine from Sime Darby. But the procedures takes about 2 months or so as they have to place an order directly to US.

Mr. P: Is there a cure for this thing that you have?

Me: (I wouldn't be sitting down here telling you that I have lived with this for FOUR YEARS if there is a cure for this thing that I have, now would I??) NOPE.

Mr. P: How did this happen to you? What happened that you developed this? Were you like this as a child?

Me: (Now you're using your brain!) No, I did not have this as a child. I had a normal childhood. I started being sensitive to Panadols, NSAIDs, painkillers one year after giving birth to my son. I had a very problematic pregnancy and was on hormones for 5 months as I had 3 near miscarriages. Most of the problems that I have today with my health started after giving birth to my son.

Mr. P: I have never come across someone like you!

Me: (But I've across MANY doctors like YOU! What's NEW??? I hear this all the time.) OK, so what is this rash on my leg? Is is a viral thing or something else?

Mr. P: It should not be dengue rash because your fever has broken for about 3 days now.

Me: What do you think this is? I am worried that it is something viral and that it could spread to my son and brother. (Oh GOD! He hasn't the faintest idea of what I have on my leg!) It does not look like shingles, does it?

Mr. P: Shingles is painful. Is this rash painful?

Me: This rash hurts but it does not hurt like shingles.

Mr. P: How do you know that shingles hurt?

Me: I have had shingles before! (DUH!!!!!!!!!!)

Mr. P: How OLD are you? Shingles usually strike the elderly.

Me: (I AM 120 years old!!!!!! AND I WILL STILL OUTLIVE YOU!) I am 36 this year. I had shingles when I was about 18 or so. Back then, I could never get the chicken pox even though I went near people with the virus. Even when my brother caught it real bad, I did not get it. And when I finally got it, I did not even know I had it because it was so minimal that I thought I had sand fly bites. I only knew that I had chicken pox when my GP noticed that I had shingles on my collar bone and that was only 4 bubbles. But it hurt like hell. So that is how I know that shingles hurt.

Mr. P: Did your doctor give you Acyclovir when you had the shingles back then?

Me: No.

Mr. P: Then what treatment did your doctor give you? Why did she not treat you with an anti-viral? Were you allergic back then?

Me: (HOW THE HELL WOULD I KNOW WHY SHE DID NOT GIVE ME ACYCLOVIR??! AND ARE YOU DEAF? DID YOU NOT HEAR THAT I WASN'T ALLERGIC BACK THEN? WHY MUST EVERYTHING BE TREATED WITH ANTI-VIRAL MEDS? CAN'T OUR BODY FIGHT IT?) No treatment whatsoever...................

Mr. P: Ok, if the rash becomes worse or it becomes bubble-like (as in shingles-like or chicken pox-like), come back and we'll run some blood tests and start you on Acyclovir if it is shingles.

Me: (WTF! I just told you that I am diagnosed as Idiopathic Anaphylaxis and you want to prescribe me Acyclovir. Even if you're the last doctor on earth, you won't see me 100 yards from your clinic. Thanks but no thanks!)

And before I walked out of Mr. P's clinic, I saw this frozen on his laptop screen. It was Plants vs. Zombies. No wonder he behaved in such a manner. The zombies have simply eaten his brains! HAH!

________________________________________________________________

Before I left the hospital, I went to the other side to look for Joel's pediatrician. I basically did NOT trust Mr. P's diagnosis (whatever that was). Dr. Pediatrician said that my immune system is currently very weak and I am picking up bacteria like a vacuum cleaner picking up lint. I must have scratched myself and somehow the follicles got infected with some bacteria. Fucicort twice a day will do the trick for about a week. And she told me to stay at home during this whole week and not go anywhere until I am strengthened.

And the Fucicort seems to be working!

Part of the rash. 

Times of Reflection

Today is December 1st 2011. 30 more days and it will be the end of the year. And so I asked myself what 'achievements' have I achieved this year? How have I grown this year? What have I done with my life this year which is different from the last?

I went through a long period of depression this year. I had a relapse which sent me rushing to the ER in December 2010. And the best part was, it happened on my birthday! A very unique birthday present indeed. The ER doctor wasn't the least bit alarmed when I told him I had jabbed myself with the Epi-Pen and that I have had anaphylactic shocks before. And when he casually asked to what may have caused this visit to the ER, I told him that it was the Peckham pear that I had consumed 2 hours before. You should have seen the look on his face! It was as though I had told him that I was a Martian from planet Jupiter and that I have come to give him moonstones from the sun. My point exactly. He did not believe me and acted like he had just heard the most ridiculous thing in his entire doctor life. It was as though I had completely made the story up and had gone to the ER for fun. It was only after they had a quick look through my file and saw my history, that the doctor became 'concerned' and asked me whether I could breathe or not. If it was a fatal attack, I would have been a corpse by the time he was 'concerned'. I was sent home after a dose of Hydrocortisone and Puriton was administered. I was still strong emotionally and mentally even though I had become sensitive to salivylates again. Prior to this relapse, I could eat food with salicylates with no reaction and could take all sorts of smell with no reaction for almost a year.

But after the relapse, I started contracting viruses and infections like a lint trap. I was constantly ill. Being ill and being super-sensitive to salicylates again wore me down emotionally. I was a wreck mentally. It came to a point that I had to be admitted because of a severe sinus infection which resulted in me blowing out globs of mucus with blood. By the time the whole lint-trap-catching-infections all came to a stop, it was already March 2011! 3 months of being ill continuously with no meds and reacting to every single smell finally broke my spirit. I fell into a depression so deep that I had spiraled out of control. I couldn't wake up in the mornings. And there were many, many mornings that I had woken up just in time to brush my teeth, dump the chicken in the pot to boil chicken soup and then go pick my son up from his school. And this went on for months.

I decided to give myself time. I decided not to push myself into trying to get out of the abyss that I was in. And slowly and steadily, I got out. I began to see the light at the end of the tunnel again.

And then August came. And I started having near-anaphylaxis attacks again! Week after week after week of attacks. Everything and anything was triggering the attacks. Before I could even finish bringing the laundry into the house, my mouth, sinus cavities, nose and throat would be burning and by the time I got into the house, my head would be pounding, my eyes red and I would start to have difficulty breathing. And then the diarrhea and the stupor for days from the double and triple doses of medications. All because the Neighbour was cooking something that irritated my system. Or the Neighbour had her laundry reeking with softener and laundry detergent that smelt like it came from Perfume Factory. I did wear masks. But they were too thin. And so began the hunt for thick cloth masks. And then I went to see my immunologist again and told him what I was using, eating and I told him about my garden. And lo and behold, I discovered that the Lantanas which were in my garden contain high-levels of salicylates! And I had SIX pots of them!!!! I absolutely LOVE Lantanas. And so with a heavy heart, I got rid of them. And it was end September. Finally October came and my system finally stopped reacting to every single thing. Finally the calm after constantly trying to outrun the tsunami for 2 months. And then I got a viral flu in November!!! Talk about being pushed to the limit.

So what have I achieved in 2011? My attempt to eat Nasi Lemak and sushi in 2011 has still not yet materialize. But I have been able to consume a certain brand of pasta in small amounts with no reaction. I can eat small amounts of food with salicylate here and there with no reaction. I have learned to cook salicylate-free food in more ways than I did last year. And that is a great achievement for me. I have grown to be more calm in stormy weathers this year compared to last year. I have corrected more of my imperfections which others have pointed out to me. And I have become even more resilient. Though my body is still weak, but my spirit, soul and mind are not.

I started this blog in order to look for people who are in the same boat as I am in and to share what I have been through. And I did. And these group of people have been a great encouragement. At least to them, I am not speaking Greek! I had also joined online support groups and forums to learn more and to share. And I have found a very good Idiopathic Anaphylaxis support group.

For most of 2011, I have been on battlegrounds, going out to war and battling for victory. I have lost some wars. I have won some. And at times, I have even looted my enemy's spoil and taken back what I have lost and sometimes more than what I have lost. And I am still alive AND free. And to me, that is the greatest achievement in my entire life on this planet Earth.

What Idiopathic Anaphylaxis Has Taught Me

1. Change

Since I have had this condition, change has been a constant companion. I have had to change my lifestyle, the way I think, my attitude and my beliefs.

With this condition, change is very constant for me. One day I am at the top of the world. And the next three months I can be in the valley of death. And by allowing myself to adapt and in being more open to these sudden changes, I am more prepared and am able to maneuver and go with the flow of this Idiopathic Anaphylaxis river.

2. Endurance

I never knew that I had so much stamina to fight in me. I mean, I did not know that I could endure such a difficult journey and yet still have much endurance to continue on this fight. There were many times during the early months that the fatigue was so great that I felt like Frodo when he finally succumbed to the power of the Ring. Many times I had succumbed to depression and exhaustion to the point of being at the brink of giving up the fight. I felt like throwing in the towel. Times like when every single smell, aroma, fragrance or even food that were salicylate-free seem to set off the anaphylaxis alarm.

3. Patience

In all of my years as a human being, patience was never a part of my personality, what more my vocabulary. And after being struck and having to live with this medical condition, it was a painful journey where patience was concerned. I had to learn patience from scratch. I had to be patient when I wanted to go out so much but could not because I was too drugged up, when I was reacting to every single thing or when I was just too exhausted from bouts of almost-anaphylaxis attacks.

I had to learn to be patient where my appetite was concerned. I had so many picas and SEVERE food cravings that I could chew on my own knuckles. Many times during the night in my ‘odourless’ room, I would smell pizza, curry prawn mee, or even fried kuay teow when there wasn’t even a smell in the room to begin with. And it used to drive me insane having all these cravings like a pregnant woman and yet being unable to satisfy the need. It is a good thing that I was born with the ‘strong will’ character. I don’t think I would have lasted if I did not have an iron will. Iron will and patience have pulled me through many times.

I had to learn patience in the area of wanting to do the things that I felt like doing but could not do so. It is akin to a leopard hiding, and waiting for the right time to strike its victim. Being impatient and striking at the wrong time would cost the leopard its meal. And I am that leopard, waiting patiently for my time to ‘strike’ the Idiopathic Anaphylaxis in its head and to have my hearty meal as a reward!

4.  Perseverance

Perseverance is steadfastness in living my life to its fullest, despite of the difficulty or delay in achieving a breakthrough. And I am still persevering on for a breakthrough. And I am persistent in obtaining a breakthrough where my health is concerned. I have had a long period of remission, and I do not believe that I would not have it again.

5. The Ability to Adapt/Think at the Speed of Lightning

There was a time where I was cooking a pasta bake dish for the guys and I felt an attack coming as a result of the smell of the mozzarella cheese that was baking in the oven. I wore a mask and I could still smell it. I ended up wearing THREE masks on top of each other and when I was done baking, I went into the outer kitchen to eat and then hid in my bedroom until the smell was cleared from the house. If I had not done so, I would have had another attack.

6. Learn to Accept Setbacks and to Make the Best Of It

I have learned that if Plan A does not work, then Plan B will have to take place. There was once where we could finally go for a short trip to the beach. The day before the trip, I had a near anaphylaxis attack which left me drained, terribly sick, so drugged-up that I could not even remember what I did for the last five minutes. And we had to postpone the trip at the last minute and pushed it to the following week and changed all of our plans.

7. Being Grateful and Thankful

I know that I am not the worst case scenario though the doctors I have seen have not come across anyone who are worse off than me. But there are worst case scenarios than me. Though there is nothing to be joyful about the other people who are in a condition that is worse than mine, I am grateful and thankful that I am at this place in my life. I am grateful that at least I can still eat the food that I am able to eat. I can still drive. I can garden. I can make music. And I have my family and friends’ continuous support and encouragement. And I am alive!

8. I Learned New Skills

Because of this medical condition, I have had to learn how to cook and make food in a new way, how to bake (I did not bake a single thing before this!), how to grow and maintain a mini organic garden to feed our tummies (I did not garden before this!), and how to live a chemical-free life though I am constantly facing chemicals in my everyday life (I did not live a chemical-free life before this).

And by learning these new skills, it has improved even my family’s living condition. It has definitely given me a miracle where my hair is concerned. My scalp was very unhealthy. And my hair was so sickly, yellow and dropping in clumps that my hairdresser kept on pestering me to do hair treatments to save it. I think it was after one year after the salicylate-free and chemical-free diet that she asked me whether I had dyed my hair or I had gone for a hair treatment. I myself did not even realize that my hair had turned pitch black. Today it is shiny, my scalp is healthy and there isn’t any white hair!! Thanks to the ‘strict and limited chemical and salicylate free diet’. I guess we win some, we lose some!

9. The Meaning of Life

Life is being contented with what we have. Life is having peace in our hearts. Life is us, being alive on the insides and not just by living with a beating heart, a pair of breathing lungs and a ‘functioning’ brain!

Life is what we can take with us in our hearts wherever we go and whatever we do. Life is about living to our fullest even with our setbacks and imperfect conditions. L.I.F.E is Living In Faith Everyday! L.I.F.E is Living In Fullness Everyday. L.I.F.E is DEFINITELY NOT Living In Fear Everyday.

10. You Will Know Who Your ‘True Friends’ Are

Mind Wide Shut

How many of us have minds that are so tightly shut that even with the use of an atomic and nuclear bomb together, it will still be sealed as tightly as ever and inaccessible. A mind that is tightly shut is a decaying mind. It is a haughty mind. It is a lofty mind. It is unteachable. It is a dead mind. It is a rigid mind. And if after reading this you are insulted, then I only have one thing to say to you. 'He who consumes chillies, will feel its spiciness.' Now if you hadn't, you wouldn't, would you?


A RIGID MIND REFUSES TO LEARN AND WILL NOT BE SUSCEPTIBLE TO ANY NEW INFORMATION


Patient: The only different thing which I ate today was the pear. The pear must have caused the allergy.
ER Doctor: What??!! Pear? That is the most ridiculous statement I have ever heard in my entire doctor-life!! Pear??!!

A RIGID MIND WILL ONLY THINK IN A STRAIGHT AND NARROW WAY AND CAN NEVER THINK OUT OF THE BOX. IT IS LIKE TELLING THE LEOPARD TO PAINT ITS SPOTS PINK


Patient upon arriving at ER: I am having an allergy reaction.
Administrator: Please have a seat first and we will register you.
Patient: I am having an allergy reaction, NOT flu or cough. I need to see the doctor NOW!!
Admin: You have to register first before the doctor attends to you. It is our procedure. That is the way we do things here. Have a seat first!

A RIGID MIND WILL THROW HISSY FITS AND SCREAMS LIKE A BITCH WHEN PRODDED, POKED OR QUESTIONED.

Patient: Can you explain this to me in lay man's term and not in your mumbo jumbo medical-terminology-jargon to what you are saying?
Doctor: Why do you want to know so much? Why are you asking so many questions? You want my job issit?! Go to medical school lah then!!!!!


A RIGID MIND IS MISS OR MISTER KNOW-IT-ALL

Patient: Here is a detailed explanation which my immunologist/allergist wrote for doctors to understand me. (hands paper to doctor)
Doctor: (takes paper and chucks it aside at table without even glancing at it) I do not need to look at it. Everything I need to know is already in my mind. You already have eczema, so there is no need to go into details or to understand your allergies. You have allergies. Period.

A RIGID MIND IS A LAZY MIND. AND POOR ATTITUDE IS A SIGN OF A LAZY MIND

Patient: Good afternoon. I need to speak to the surgeon as I am having an allergy reaction to the painkillers. I only had the surgery yesterday.
Doctor's assistant (D.A.): The doctor has gone home and will be on leave for one week.
Patient: Can you get him to call me or can you call him to tell him of my predicament?
D.A.: He is on leave already. I don't have his number.
Patient: What do you mean you don't have his number? He is the hospital's employee. I'm just asking you to call him. I'm not asking you to call the doctor to go BACK to the hospital. I just had my surgery yesterday and it is hurting like hell crazy, and I can't take the painkillers he gave me.
D.A.: I told you he is not here.
Patient: Is there any other doctor I can speak to then?
D.A.: They are all very busy madame. Just eat the medication and you will be fine. (hangs up)

A RIGID MIND HAS NO COMMON SENSE

Customer: Do you have any products which are unscented? I am allergic to fragrances.
Sales assistant: Maybe if you breathe through your mouth when using our products, then you won't be affected by the perfume? Or maybe you breathe less when using the products?

A RIGID MIND IS OBNOXIOUS

Patient: I do not understand what you are saying.
Doctor: Why don't you just go home and surf the Net and find out? Even a child could do it!

A RIGID MIND DOES NOT THINK

Allergy Sufferer: I am allergic to fragrances. I can have a fatal allergy attack from being exposed to them.
Supposedly Friend: Oh ok.
2 Weeks later
Supposedly Friend: I hope you don't mind that I use perfumes, as I just love perfumes and I would just DIE if  I did not use perfumes!!!

Need I say more?

The Midnight Sun

There's Ketotifen,
Puriton, Zrytec, Xyzal, Aerius and many more
Some are able to take Ibuprofen
Some take so many that it seeps out of their pores

Then there's Claritin
And the Zyrtec - D
It supposedly helps your excessive sneezing
But they all make you zzzzz.

The king of it all
Is called Prednisolone
It causes you gastritis, weight gain,
Osteoporosis, paper-thin-skin and makes you look like a ball
Oh, one can feel so alone

No longer do I ask, 'WHY?'
'Will I get better by and by?'
'When will I be able to wean of the meds?'
Or be bothered about the people's stares

I will be tough as nails
Though on some days I am as soft as tofu
On some days I will sail
And I will be as risilient like the bamboo

Yes, it may be incurable
But there is this thing called hope
Of course the doctors say it's totally not probable
One thing's for sure: I will certainly not mope!

So I say to you Idiopathic Anaphylaxis
This life is like a metamorphosis
The ending IS beautiful and glorious
Though the battle may be fierce
I will fight you like a matador
And it is you that I will gore

So spread out the table for me
Where I will drink, feast and be merry
Nasi Lemak, Tortillas, Prawn Mee, Iced Lemon Tea and Sashimi
I will look to the West
And see it at its best
And proclaim, 'How glorious is the Midnight Sun!'

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!