A Long Day

All morning, the ascites tube was not draining properly, my tummy was painful. The nurses told me to wait till Monday. I felt like getting angry, “Why does a hospital tell patient to wait for two days to ease her pains? Surely someone could help?”

As the pains became more intense, I decided to take matters to my hand. I got out of the bed to look for the weekend medical consultant. I found one in white gown and went up to him, “Please don’t let me suffer for the whole weekend, just take a look at the tube!” I insisted. “I am not going back to my bed till you have a look.”

The weekend medical consultant promised me he would come.  “There are bubbles in the tube, that is why it is not draining.”

He injected water with a syringe to flush the tube. It was a sudden cold shock again but it worked. I was so happy seeing the fluid filling up the tube.

Several hours later, I let out a big long fart, air stuck by the peritoneal fluid for hours….. and the tummy ache was gone.

The Indian man in the next room came into my room, howling, “I want to see my boss! Let me go!”

Nurses came to coax him to go back to his bed but he wouldn’t budge. Security men were called in to carry him back to the bed. When I walked passed his room, I saw that his legs were tied to the bed railings. He continued to howl hauntingly, “I want to see my boss! Let me go!”

It was so sad to hear this. Perhaps he was worried about losing his job when did couldn’t show up for work. He must a laborer or some sort. His family looked quite unkempt and deprived. I heard the nurse telling his wife about buying more diapers for him. She nodded, all the time touching her gold bracelets.I wondered if she was going to pawn her bracelet to help her husband.

One thing I know is that it is not cheap to be a patient. And if you don’t have the things needed in the ward such as adult diapers, you lose your dignity.

By Ching Ching

Only My God Cares

I am now allergic to certain religious people. People who declare that there is only one truth and no other truths. All others are fake, devilish and must be eliminated.

These people use aggressive ways to make sure others convert to their religions, this include coercion of a better life after death, the use of guilt and fear, and even the use of ‘help” ( If I help you when you are down, then my God help me to help you, then you should come to my religion, otherwise why should I help you?)

And people who take my hospitalization as an opportunity to convert me at my death bed. They can spend hours to lecture me even when I am in pains or too tired to understand anything. They just keep talking and talking.

My sister was stressed from another family member’s constant forceful urging to join his religion. She was made guilty for not doing the chants and the practices. I refused to be forced as I believe that I know more about this family member’s religion than him. As a new convert, he is so gungho about his religion that his family spent whole weekends at religious places all around the city they live in. His wish is to get me, my daughter, my sister and my mother to be just as devoted. Anyone who resists get a verbal lashing about our un-gratefulness of good things.

The same goes with aggressive people who are bent on converting me to their religions. When I question them or ask them why they can’t help me as humans, friends, relatives, but only as someone from the own religions, some insist, “God sends me to help you to go to a better place after you die! If you don’t embrace my religion, you are missing out of good things.”

Guan Yin sitting on a lotus.Guan 

 The only religious people I like are those who don’t force  me, but always tell me they keep me in theirprayers and that their Gods love me.They don’t convert me nor force me to follow their truths.

After seeing deaths in the hospital wards and living for several months in the zone where anything can happen to me, I now pray to God in English about eHomemakers, that God will help eHomemakers to break through. I pray to Goddess of Mercy in Mandarin for support, friends, and loving kindness around me. I chant Buddist ‘Oom mani pak mei home’ to protect my body.

And the energy people have taught me to think. “I share, I touch, I am one with others. I love, I forgive, I nurture, I grow. Every minute of my life is fulfilled.”

Guan Yin with many hands and eyes

How can I be forgotten when I am loved by three Gods?

Of course, it is a scandal for the religious people to hear me declaring my allegiance to three different Gods. “You can only believe in my God to get the protection and the blessings!” They insisted.

When you have several people, all pulling you to their Gods, you wonder why none of the Gods is generous enough to love the unbelievers and why they have to condemn the unbelievers into sufferings and
more bad lives in spiritual journeys.

Some of the verses the religious people show me from their holy books say that they should not help those who don’t embrace the religion nor mix with the unbelievers. Goose pimples stand on my skin when I read verses like these.

Meanwhile, I am standing firm in my beliefs.

By Ching Ching

Pain Management

One of the key things that a patient must learn to cope with is pain management. Some pains that you have to bear with, almost daily -- the needle when they take lots of blood from your arms, the anesthetic needles before a surgery. 

I squirmed every time I see a needle－that was before I got sick. Then with this peritoneal fluid retention, more jabs come.  In March, my arms were so bruised that there was no way to find a functioning vein but to poke my toes or thighs. My veins collapsed from inexperienced nurses in Damansara Specialist Hospital jabbing me to draw blood.

Then in the emergency room in University Hospital, five doctors tried to take blood from me the first time I was admitted. ‘What happened to your veins?” they asked. After one hour, one of them managed to insert the triangular thing onto my right thumb. I was exhausted and spent by then.

God where are you? So much pains in life? Give me a break, please?

Eventually, I figured out that being humorous take my mind off the pains. So during surgeries, I cracked jokes with the nurses and the surgeons. I felt good to hear laughter in the operating theatre.And when I go back to my ward, I try to look at the surgery wounds as ‘windows to a better future’, and I assured myself that these wounds are temporary.

Chinese characters: Pains

“The pains are only today, and it will go away tomorrow!” I told myself repeatedly.

And I learn to take deep breaths and make myself calm. Enduring pains is stressful. But if I change my attitude and look at the needle pains at the moment of pain as ‘This is good for me’, “Just a prick and it will go away”, “Good medication to get you well, just breathe deeply and you will be alright, ” then the pains are more bearable.

With real pains and feared pains, my appetite has gone down. Since the tapping take away my blood protein, the doctor’s team has prescribed protein powder in the form of ‘Ensure’ so that I don’t lose more weight. I could get the powder in can form, in the form of a drink or in powder form. I chose the can form.

Attitude makes all the difference. 

All that can protect me

 The book “Living in the Now’, a Christmas present from my best friend five years ago has been in my current reading list. So for three days at the hospital, I slowly digested part of the content and learn to live in the NOW.

Just like Pong. The Pong who didn’t want morphine even when in deep pains because she wanted to talk to me.

Breathe deeply, think of all the good things around me. And be calm.

Think of my dreams, and the good feelings that come with achieving my dreams. Visualize success to get rid of the feeling of pains in the body.

 And also prayer for divine intervention.

And when I need human encouragement, I look for Lucy. She has been a lupus patient for almost three decades.  Ten years ago, she recovered from a one year Lupus flare-up and she almost died. When she got over it, she swore to God that she would devote her life to help Lupus patients. So since she has been with Salaam Wanita project for so long, she has become a trusted friend, and the only one I would listen to when I feel like giving up.

Her counseling consisted of advice to accept the illness and then move on with gusto. Some of the patients she counseled refuse to accept Lupus as the illness that had come onto them, therefore they refused to take steroid and the proper care needed. They choose to neglect. “You must forget the old you, and become a new person!”

I thank God that Lucy is the Angel Gabriel in human form.

By Ching Ching

Sitting in the Mess

One of the medications given to me is a laxative, this means I had to go do big business every two hours or so. It is that effective.

But when you are in the hospital ward and you are not allowed to go to the toilet, it is inhuman to be subjected to long hours of ‘sitting in the shit’!

The laxative gave me a good movement in the morning after breakfast. My mother came to see me. She asked the nurses to change my diapers.  “Tolong-lah,” she appealed nicely.  Two young ones finally came, drew the curtain and took off my diapers.

“Where are your wet tissues?” We have to buy disposable wet tissues for nurses to clean us up. These tissues are not cheap especially if you have a few runs in the day.

  Adult diapers, something I loaf to wear…………….

 

(I found a site for people who wear adult diapers, http://www.experienceproject.com/groups/Wear-Adult-Diapers/139333)

Then, after lunch in the afternoon, a big wet one came.  I tried to restrain myself but failed. 

The rush was all the way URGENT.

“Sorry, mother, I know it stinks.” I was embarrassed.

My mother went to find the nurses but they were all buzy. The first year trainee nurses just smiled and walked away when they heard it was ‘berak’ (big business). We have to wait for the nurses on duty to do something. All the nurses said they were buzy, obviously. No one liked to change brown diapers.

These pictures depict the real life in the hospital ward. Unflushable toilet bowls, brown mess on the toilet floor.

That afternoon, I sat in the messy diapers for more than three hours.  When I sat up to drink, I felt like I mashed up something round and soft!  It felt so uncomfortable.  When I lay down, I felt like the mash was further meshed! I tried tol let my mind go somewhere by reading a book, but the mush was down there, and I could feel it then and there. It was uncomfortable to know that bacteria are brewing down there, feasting on my discharge! Yak!

I complained that it took me three hours to have my diapers changed. The nurse was irritated, “We got a lot of work to do. You are not the only patient here!”

That afternoon, I decided that independence is the way to go if I were to heal in this ward. No way, will I let myself be subject to this inhuman condition any more. I must get the order of ‘cannot go to toilet on own’ overturned as fast as possible.

When doctor P came at 5 pm to give me one more check, I told him about the messy mess. “I’ve little dignity left!” I told him, “please let me go to toilet by myself, I promise I will not fall and I will ask my mother to wait at the door.”

My mother helped me to argue my case too. “Very bad, she had to sit on her diapers for a long time. Bad wind goes into body if she does this every day.”

The doctor finally relented, “Ok, I will give instructions but you must make sure you don’t faint in the toilets.”

“I will ask my ward mates to also help out if my mother is not here,” I gave more solution to the situation, desperate to be independent.

That day, I learnt that the freedom to clean your own shit is not a born right!!

By Ching Ching

A Burden Lifted

Today is my sister’s birthday. I waited on the yellow chairs at Menara Utama in front of Secret Recipe.  People-watching is great for the soul, I concluded.

For two hours, I saw wheelchair-bound persons carrying their own bags to go up to the wards. A few were on crutches, but they carried their bags and walked with much dignity.

My home carers came to pick me up for lunch. We went to a Western restaurant in Section 17, PJ. I had a ‘duck l’orange’ that tasted like heaven….and chocolate cream pie that melted in the mouth. My sister enjoyed her pasta and my daughter enjoyed hers. My mother got her soft lasangne for her teeth. Every one was happy.

As I looked around the table, I realized that the past few months since I got sick had really changed our relationship with each other. Not only that they are supportive with what I do in eHomemakers, my sister and my mother have been paying for meals!  And we actually talk and laugh without me being criticized. The support I envision whenever I pray to Goddess of Mercy is working!

 

Remove the blockades and let good energy flow freely in me and around me!

Buoyant by the new bondings, I decided to follow the advice given my energy people. Forgive people so that the energy can move, so that the universe can channel the good energy into and onto you. Forgiveness removes blockades. So I must forgive my home carers for everything－ for their skepticism of my non-profit work, their unsupportive past and all the misgivings I have as a patient needing their care and understanding.

In the car, I said to my mother, “I forgive you!” And I hugged her.Taken aback at first, she finally said, “I gave birth to you, how can I not support you.”

Then I said to my sister, “I forgive you!” And I hugged her. She said, “Ok-lah!”

And then to my daughter, “I also forgive you for yelling at your mommy!” And I hugged her tightly.

They dropped me back to the hospital and I slept at 1 am instead of 4 am.

By Ching Ching

Another Departing Soul

I came back to the hospital early in the morning.

My tests came back. The result showed that there was high level of autoimmune activity. The Lupus medical team came to see me. They asked questions as to my sensitivity to the sun and checked if I had the butterfly imprint on my cheeks. My blood test for Lupus was negative.

 “I got sun burnt just like any Chinese lady,” I told them.

“It can take 3-5 years to diagnose lupus, meanwhile we have to classified you as having auto-immuned disease.”

The Chinese elderly lady who had been on oxygen passed away. She didn’t eat nor open her eyes for ove a week.  Her daughter cried. I felt tears on my cheeks just listening to her sobbing and the ‘Why are you leaving us?”  Strong love warms my heart.

Calming the soul when the ashes
from cremation are spread  to nature.

She was wrapped with a white cloth. A few hours later, Buddhist monks came to chant for the departing soul. The family cried softly. Then she was wheeled away to the mortuary.

A living life was thus gone.  May her soul be blessed for the next life.

Seeing deaths in the ward has made me more circumspect.  It is really true that one can’t bring anything to the other side after one takes the last breath.  And when a patient is faced with the impending arrival  of death, what would she do?

Will seeing angels help one to feel better at such moments? 

By Ching Ching

Things You Take for Granted

One Friday 9 pm, I was discharged from the ward for home healing. Elated, I changed into my clothes.

" Oh oh, I don’t have any underwear!” My home carers had forgotten to give me a new change of clothes, all I had were dirty clothes. I wore the blouse and the pants but the underwear!!!

“You don’t have enough stretched underwears! Only a few old ones are suitable for you, the rest are too tight on your belly! ” My daughter lamented when I chided her for forgetting to bring me clothes for the discharge. “And it has been raining, the clothes are not drying fast enough!”

“We don’t have time, we will have to go to get you L size underwear.” My sister suggested.

“After I get well, what do I do with the L size?”

“Donate to Ah Poh (my mother)!”

“Why not borrow from Ah Poh? Now that you have to stick menstrual pad and towels inside the underwear to soak the liquid, Ah Poh’s are perfect, even the L size of modern underwear is too tight for you! ”My daughter suggested.

All of a sudden, we burst out laughing except Ah Poh.

“What is so funny?” Ah Poh cocked her eyebrows. “My underwear is comfortable and useful. And low cost. ”

MY daughter snickered, “Ah Poh, your underwear design is number 1.”  Ah Poh still wears underwears she made from old cloth.

LASTING TRADITIONAL DESIGN

This underwear design makes it airy 
and with lots of space to wrap thing on the top.

How an ascites patient can make full use of such functional and low cost wear? See the diagram below for instructions on how to roll a small towel onto the top of the underwear, and how to tape menstrual pads around the top of the underwear. This way, you have a low cost wear to stop the peritonel fluid from wetting your blouses and your pants or skirts. If you use medical gauze that the hospital use, not only that it is difficult to find, it is also more costly.

Do remember to bring several small towels if you are out for at least eight hours. Chuck the towel away when it is wet and smelly and put it into a plastic bag. Change into a new one. You have to wash the towels daily for they can smell badly after a few hours. Remember, they come from your body and the water is pressed through the internal organs!

Use menstrual pads that are meant for night time. Those which are highly absorbent are the best for you don’t have to change the pad at night and you can sleep through!

Then the most touching thing that happened: my sister handed me a bunch of M size ( she is two sizes bigger than me) underwear with ‘stretched’ tops,  “I lend you my underwear, already washed with Dettol, so no germs from me. You don’t have to buy so many underwears now cause your sizes keep changing. ”

Underwear is a very private thing, for someone to lend you theirs means they really want to help.

Wow!! 

By Ching Ching