It's Good For Your Health, They Said...

Those who knew that I am actually sick, sometimes came up and told me that such and such took this and that supplement/herbal/drugs and it helped their cancer/disease/etc.

Depending on my mood my reaction would be smile, nod, move on; or, I would tell them that it won't work with me because it is different than autoimmune. There were times when I was too tired to discuss about their suggestion and too upset as they kept insisted that I said, 'look, if I tried that, I might die'. Then I left. The truth is, I might not die from it... but I'd be in agony just like two nights ago and yesterday.

So several people has been saying that I should've tried chlorophyl or spirulina. I wasn't sure. I figured it might increase my fiber intake. So I was asking this pharmacist about it. He said it is good and ok to try, but there is a better one: astaxanthin. Then a fellow autoimmune patient said she took if for a while and it's been great. That was weeks ago.

On Sunday I managed to go to a pharmacy and remember about buying it. The remembering part is crucial as I have brain fog often. Not as sever as last year when I forgot my name. I bought the lowest strength. I took it on Sunday, Monday, Wednesday and Thursday.

I remember on Tuesday I woke up with pain in my left foot where the ligament was torn last year. I found it so strange as I had never had any problem before. the pain subsided in an hour or so. In the middle of the night of Wednesday I woke up due to pain in my right hip as I was sleeping on my right side. I changed position but the pain persisted. on Thursday I was in pain, I haven't been in such pain for along time. my right side was in pain from head to toe.
Only after I took another astaxathin after dinner I was thinking what was different in the last several days, and it was astaxanthin. I started to search pubmed. and there it was: benefit: increase immune.

As someone who needs to tame her immune because it was too strong, taking a 'harmless' supplement which turned out increasing the said immune is just plain stupid. I learnt my lesson.

It Is Life, Jim, But Not As We Know It

A year ago today, I slipped. That split second event has changed my life forever.
It has been hard, physically and mentally, but life goes on and so must I.
I know I am still lucky that I still have my job, that I can still function pretty normal, that my friends and family support me.

I guess this is part of growing up. One of my friends said, if I pass this trial, it means I graduated to the next level.  To be honest, I don't care about the next level.  I do believe in what that lady said to me back in Rotterdam: "every thing is going to be alright".. eventually.  I don't know when, I don't know how, but It will somehow.

Just Saying..

The Stick

I carry a walking stick with me most of the time I am not home now. My mom and O complained about it, saying I look like an elderly. That all I need is to do physiotherapy and be done with the stick. Tonight I met this guy who works across the floor who asked about my stick and after I explained why I carry it with me, told me that I shouldn't make a habit out of carrying it. Isn't it great when someone who talked with you for about 5 minutes be the expert of your life and told you what to do? :) Let's back track to where it started. Last June, 19th of June to be exact, which was The anniversary of grandfather's death, also known as the death of my previous live I fell off the stairs at work. Apparently I was one of many victims of that precise stairs. I was quite lucky, if one can call it lucky, that I didn't need any surgery or broke any bone. I do, however, left with torn ligaments and an autoimmune disease. I graduated from a wheelchair to a walker to a walking stick as my feet is getting better in 2 months. The problem is with my autoimmune, I now have the tendency of getting dizzy when I am tired or stress out or both. It comes and goes as it pleases. My podiatrist agrees that it is better for me to carry the walking stick in case I was by myself and get dizzy so I have less chance of falling. I don't use it at home or at the office as there are plenty of furniture that I can grab to steady myself. However, to go to the restroom at the office I still carry my stick when I go there by myself as the floor is slippery enough when it is dry and most of the time the restroom floor is wet due to people doing ablution before praying on the faucet which they are not supposed to do. Did I mention I fell twice there between February and May almost knocking my head on the wall? I don't get why all these people object my carrying my stick when they are not there 24/7 with me to help me when I feel dizzy or about to faint. By carrying it I can maintain my independence at some degrees, as I don't have to wait for anyone to get around. I wish there is a walking stick that you can fold like an umbrella which you only open when you need it, sort of like the stick that is use by the blind, only it has to be sturdy enough to hold my body weight. This might be the beginning of a project.. like they say, every ending is a new beginning you just don't know it at the time.

Life threw a curveball...

I slipped and fell off the stairs at work mid June. Not a single bone was broken, but it swelled rapidly and hurt more than when I had hairline fracture. I knew something wasn't right.

My orthopedic doctor told me I have torn ligaments and not to walk for 3 weeks. I duly used a wheelchair to get about. Gradually I began using a walker and now using a stick to stabilize. I joked that I can do a race with the elderly I met, and probably they are winning. I started to be forgetful, confused and had trouble concentrating by July. Toward the end of July I started having headaches.

During that time my breast hurt so much I wanted to cry. I did an usg, and emailed the result to my consultant in KL. She said if I still have problem after my period I need to see a doctor.  It is still hurting but not so much. I started to notice that my mouth is so dry, at one point I drank 3 liters of water while being at the office for 9 hours. At times, my nails turn blue and painful from the airco.

Meanwhile, I saw my internist who also happened to be my dad's friend. The moment he saw me he suspected that I have vasculitis and I'm low on vitamin D, and told me to do some blood test. I thought it was routine tests, until I saw that he ticked on the box next to ANA under rheumatology test. Something is not right.

Three days later the result came back. Everything was good except that I have high cholesterol and my ANA results were positive. It points to Sjogren's Syndrome, an autoimmune disease. Not. Good.

Now I take 7-8 different pills a day, dealing with dry eyes, dry mouth and throat, rash, brain fog, and joints pain. I try to live my life as normal as possible but sometimes it is frustrating.

Not only I have to be careful with what I eat (apparently sugar, dairy, gluten are not my friends anymore, which is suck as I love my cakes and my comfort food is mac & cheese), light and sun are not agreeing with me. I've notice each time I went to carrefour with its bright UV-emitting-flourescent lights I feel so weak after about 30 minutes. Stress is a big problem. Once, due to traffic I was late for an appointment even though I left the house 1.5 hours prior to the schedule. It supposed to be a 40 minutes ride which turned into more than 2 hours ride. After catching the end of the meeting, and on a taxi back to the office, I felt like collapsing. I paid for the stress right away.

So, now I close my eyes to things that might agitate me, I let go a lot of things. Seeing the brighter things, like now I have something in common with Venus Williams. It's been 24 days since my diagnosis, and every day is a learning process. It's a new way of living, but life goes on.

Close Call

+Who do you think is going to win? Not you hope to win, but going to win.
-Look, you how I feel about this, the question is how big the winning is going to be. I think the margin is going to be less than 5% and it might lead to chaos.
+Nah, it's going to be more than 10%

That was taken place the night before the election.

At present we have three presidents: SBY, JKW and PS; the incumbent, winner of quick count,and  that of TVOne.

All joke aside, we have to wait until July 22 to know which one has the most votes. That being said, today the head of election committee announced that the result is not final. Seriously?? Why do we even bother.

How to Travel After a Fracture

One rainy night toward the end of October I slipped when I tried getting into the bus. It started to swell pretty quickly, as soon as I arrived home I put on Thrombopop (a salve against swelling) and param kocok (traditional concoction for bruising) and wrapped it tightly.

The next day I went to the hospital, got an xray, and yes, another hairline fracture. This time on my left cuboid bone. The doctor said I didnt need any cast, just properly wrapped it and no high heels.

Two days later I was at the airport, checking in. I asked the person in charged if I was allowed to board along with family with kids. She asked why, and I told the story. 'ok, you'll be in a wheelchair' she said.
'My gosh, I dont need a wheelchair, I can walk slowly and it is still 3 hours prior to departure' I rejected her command. But she wont take no, so I had to be wheeled in after checking in.

I felt embarrassed, yet grateful. I was healthy enough bar that one bone, people didnt see that I had swollen foot. And I'd been walking around in the last two days, for crying out loud.

As we transited, I was glad she put me in a wheelchair, it was quite a walk, up and down 2 flight of stairs. It was quite funny when we were about to board, there were 12 (yes, twelve) people in a wheelchair! Each has their own person who pushed it. It felt like a race. I was probably the youngest.

When we landed in SFO, they didnt have any wheelchair for me. I was about to walk, when they said I should get one. So, I did, except this time there were only 3 people pushing all the wheelchairs! Poor them. They had to do a relay pushing us. And, they also helped us getting our luggage. The good thing about being in a wheelchair was we didnt have to wait for long for immigration.

On my way back I didnt ask for a wheelchair. My foot was more stable and I had been walking (slowly) every where for a week anyway. Granted travelling with broken bone disturbed some of my plans and I have to walk slowly and rest often.  But it was a fab trip none the less.

Foodilicious

Things that I miss are usually food

How Old Are Your Ears?

When it comes to our body, what is stated on our birth certificate could means nothing much. You were born in such and such day, but your body could be older or younger than that number.

Back in NL my Chinese doctor jokingly told me that my face looked 25, while my body was 50. There's some truth in what she said, as I was coming to her office on weekly basis (sometimes twice a week) for acupuncture and tui na massage to heal some nerves damage & fibromyalgia which took toll on my body.

That being said, my ears are younger than I am, as I could still hear some high pitch sound which normally someone my age won't be able to hear, such as 17,000Hz. I even took the medical hearing test to prove it.

Below is a free simple test to check your hearing, all you need is to set it to 1080p and use a headset in a quiet room on a normal sound setting.

Judging from the comments, there are plenty youngsters who are not able to hear according their age level. I assume they are using a lot of headset to hear very loud music on daily basis which ruins their hair cells. I hope they change their habit and preserve their hair cells longer.


 

Start Again

I went to another vipassana retreat the other day. There were only 4 other women and 7 guys with 3 volunteers (1 guy, 2 ladies) and a Kiwi teacher. 

This time I felt a lot of energy that I felt like doing somersault every now and then. The food was great, much improved than the first session I had in Indonesia. 

To be honest, I went because I blew up at work about a week before. Not. Good. At. All. A client was pressuring this urgent thing and the guy who supposed to handle it didn't do much. That day he came and did nothing on the matter even though I told him it's urgent every day for a week. I had a report to write so I couldn't go and take care of it myself, plus at the end of that day I had to go out of town for several days. I asked him to do go nicely twice during the day, so it would be done by the end of the day. Until I lost it. Yes, I know: terrible. I'm ashamed of it. 

The aftermath of that episode was: he finally took care of it the next day and an hour before he finalized it, we lost that account. Oh, well.

I thought I would've felt more rage in my meditation, but I didn't. However, between meditation I wasn't at peace. I was scared, actually. Normally, while waiting for the nightly Indonesian discourse to finish (because the English discourse is shorter) I normally just walk around the yard and watch the city light from above. This time I just waited in front of the hall. I felt something is lurking in the dark. 

I know no meditation is the same, but this is the first time I was scared in that place. Even when I was trapped in the bathroom with a snake years ago I wasn't as scared like this time. 

Perhaps I need to confront my fear in the eye. Well, that and anger. Yupe, got a lot to do. 

Start again.. Work diligently. Work patiently and persistently.    

Mala Educación a.k.a Grandma's Sex Education

I learnt how my maternal grandmother taught her kids about sex today. I was laughing until I cried of all the stories my aunts (who are all older than 70 year old) told me. Mind you the first 8 (eight!) out of 10 kids in the family are female, so they had never seen penis for years.

Aunt #1:
When she was about 12 year old her friend told her that baby came out of the body via vagina.
Aunt: No, it's from the belly button
Friend: No, silly girl, it's from down there
A: No, that is for peeing...baby comes out from the belly button, my mother told me so, she wouldn't lie

Aunt #1 said that her mother said that to have a baby you wrap a carrot with gauze and put it on your belly, then you cover them in some sort corset for a while until it disappeared in the belly.

She was already in the last year of high school at the time this story took place at a dance event.
When this guy she was dancing with began to pant, this conversation took place:
Aunt: Are you tired? Because we could stop now.
Boy: Np, no,, not tired
A: Then why are you panting?
Dancing again
A: Hey, what is that? Do you have a battery in your pocket?
B: ....

Aunt #2:
Staying over at her aunt's who had several sons. One day the sons were taking a bath (mandi) and somehow she saw penis for the first time
A: Ibu (mother), ibu... what's wrong with him... he has a worm!

Years later after she was kissed she said she thought she's not virgin anymore and she washed it 3 days in a row. This is because her mother said that you could get pregnant from a kiss (mom also had been taught this story)

Gosh, so glad my dad taught me well :)

On Food For Thought

Last night it all became real, my internist said that I have Colitis, an inflammation of the colon. Great. At least now we have a name for it so people can't say that I'm acting up. I've been suffering from cramps every now and then since the beginning of last week. My stomach doesn't feel right. I lost my appetite, I've been shunning my veggies.

I think my body told me what I need, if I listen to it closely. About two weeks ago, I was looking for vitamin B12, but my pharmacy didn't have any stock, so I settled with some vitamin B for kids. I was also looking for some iron supplement.

On Saturday when we were at the mall near our place I was thinking if I need to get Enzyplex for my stomach. I was also thinking about asking my internist some for Librax, which needs a prescription because Chlordiazepoxide can be addictive.    Guess what internist gave me? Librax and Enzyplex along with Mucosta because I'm alergic to all sulfa-medication, which actually works for colitis.

So, now I'm faced to even more limited dietary in take.  I have to avoid all the things that I love such as chocolate, dairy products, brocolli, mushroom, raisin, and god knows what else. The safest bet is eating Japanese food, which is not very budget friendly.

It's a wake up call to listen more to my body.
Who would have guess, high fiber is not good for your body?

Legal Female Genital 'Mutilation'?

I wonder about this new trend of kids younger than 14 year old having designer vagina surgery. How much different it was with female genital mutilation practices in some countries, including Indonesia?

To my knowledge, the official stand of Indonesian Doctors Association is not to endorse FGM practices. That being said, I heard some doctors practice "FGM" in the notion to provide a 'better' care of the victims when the parents insist that their daughter must be submitted into FGM practices based on religious belief. In such case, the doctor didnt cut anything, only pricked the clitoris.

To my disgust, I was told that the traditional practitioners cut a little.

Now, reading that in the Europe kids, as young as 9 year old, go through surgical procedure citing due to some psychological reasoning is beyond me. Most of adults having the same procedure are because they compare their vagina to that of porn stars. I wonder if the internet helps creating such trend among young children, too.

I could understand the need of surgery if it was a congenital abnormality, but how many people out there having such problem?

What happens in Europe is a form of legal mutilation, because the underlaying reason of having such procedure is similar as in FGM countries: Someone (parents) wants that their daughter/ themselves conforming with certain idea that the small part of society holds about female genital that looks a certain way.

In FGM countries we could cite that people who do FGM are mostly coming from a low educated background. What can we say about their European/Western counterparts?

My Fave Patient

Years ago, I was doing my own thing when I met the ever sweet Mrs vdP. She was in her 50s, had an overjet and whole baggage of medical problems. Her dentist referred her to our surgery. Soon, she had to decide about getting a braces and an orthognathic surgery. Mrs vdP was hesitant and the doctor told her to talk to me. I discussed with her and her husband about my experience and showed her my pictures. In the end, she agreed to do the whole thing which would take more than one year of her life.

Each time she came by for her check-up, she looked for me. "Girl, let me see you teeth" asked her each time as soon as I showed up in front of her. I smiled. She said "Wonderful", then left. That's our routine.

After about three months, she had much less overjet that she could close her lips. I chatted with her, telling her how good her progress was. She was so happy. She told me some of her friends didnt recognized her and how doctor H is her angel.

After her surgery, due to her medical condition she looked black and blue for the longest time, we joked that her husband has been beating her up. I gave some tips about eating, cleaning wired-shut teeth and reducing the bruises. Her end result was splendid. She couldnt be happier. And her husband, too. She thanked me for encouraging her to take the step, while all I did was sharing my experience.

Today, I just found out that she passed away a couple months ago.

Dag Mevrouw vdP... Rust Zacht.

Closer To Home

I got home to a zombie like maid the other day. She got sick again when I was away. Feverish, coughing, headache, nauseated, sleepless plus I know she has ulcer. She refused to go to the doctor, until I made our security guy practically dragged her.

The doctor that saw her, I think, was a newbie. the doctor did nothing about the fact she's not eating well and feverish. All that she got was an antihistamine. I gave her some meds for her ulcer and she felt a bit better, but still practically refusing to eat whatever food I gave her.

Today, mom & I took her to the hospital to see my dad's colleague, an internist. After an x-ray, the verdict is TB and next Thursday she has to see a Pulmologist. Our maid refused to be admitted to the hospital. I threatened her that if she still refused to eat properly, I will put her in the hospital and told them to give her an intravenous drip. Mom said if the pulmologist said that she has to be admitted to hospital, she wont be allowed to refuse.

I just hope it wont be the resistance type of TB and that both my mom and I wont catch any. The internist did check my mom (who is still coughing for weeks now) and said that she doesnt have TB. I think I had my vaccine booster before moving back here. In any case, I'm scheduled to have my thorax x ray in 2 months anyway.

On a lighter note, there was a funny moment when we were in the hospital. As soon as the internist said  'fleck' after examining her, I knew she needs an x ray. So instinctively I told her to come along with me to the radiology dept. The internist was half laughing and half yelling that I have to wait for the referral note when I was already out of his office, leaving mom chatting with him. His nurse commented that I'm the proof of growing up in the hospital. :)

Birthing

Now, you know.. Uterus & vagina are amazingly powerful. SOURCE: Bamberg C, Rademacher G, Güttler F, et al. Human birth observed in real-time open magnetic resonance imaging. Am J Obstet Gynecol 2012;206:505.e1-6.

On Commitment

One of the first questions when you meet Indonesians is are you married. That's how committed Indonesians are to family and married lives.

As a single female in Indonesia, it is a given part of life to be harass by people about getting hitched and produce babies, lots of babies, as soon as possible. Because, the clock is ticking... rapidly in my case. It's like you are only half a human if you are unable to accomplished those feats. 

On the other hand, I kept reading and meeting people, especially Westerners, who supposed to have commitment problem so severe that they've decided that they are not the marrying kind. What I dont understand about these type of folks is that they refused to get married but have no problem having not just a kid, but kids, with their partner.

Personally, having kids is a much bigger commitment than just marrying some guy. With no kids involved, if things didnt work out with the guy it's easy to get a divorce/separation, but not when kids are involved. Having kids means putting (a) person(s) in this crazy, full of suffering, yet enchanting world, which also means you are committed to that new person and also to the former partner to bring the kid up the best you can. Having both parents involve helps.

So why people are scared of getting married but not scared of having kids? Is it because that piece of paper that makes things finalized?

Orang Pinggiran - People on the Outskirt

By accident I saw an episode of this program on telly about a 9 year old kid named Herman who lives with his grandmother as his mom left him and both of his father and grandfather are already passed away. He only managed to go to school for two years due to financial hardship.

By financial hardship I mean he has to work to help his grandmother collecting pine tree chips that he sold for IDR 2000 a sack of 5 kilo. His grandmother only earn about IDR 3000 a day. They still have a bamboo house which was renovated a while back with the help of his neighbors. The boy was very small for his age due to malnutrition but he was tenacious, willing to work, and eager to go back to school.

Mom was very distraught upon seeing the program and wanted to take him into our home so that he could go to school. I was more concern that we are not separating the duo.

We tried calling the number shown in the end of the program but no body picked up the phone. That was almost two weeks ago. Tonight by accident I found a contact person for him on Facebook. I called her up, and was told that an orphanage in Slawi is taking him and his grandmother in and already register him for the next school year. They are ready to move to Slawi any day now.

Somehow when I heard that news, my gut feeling is telling me to keep in touch with the contact person to monitor. I hope I'll be proven wrong and Herman & his grandmother will be alright in the new place.

Cooking Mood

Last year January Pat asked if I cook. I used to cook everyday back in lowland. In fact I used to bake once a week and took it to the office. I enjoyed baking more than cooking actually. I heart Delia Smith. She gives detailed instruction and pictures,which help a lot.

Back in Nusantara, I cook on average once or twice a year, perhaps three times if I had good mood. I baked just once. The fact that we have a good cook at home and it's always hot in the kitchen doesnt help. As for baking, I still havent figured out how to use English recipes in Indonesia properly and dont feel like experimenting anyways.

Since I've been sick two weeks or so ago, I've been on porridge/soft rice diet and had enough them. I started to look for recipes again. The most frustrating thing about cooking is most of the time I was in the mood of cooking, I missed an ingredient or two at home. Just like in the weekend when I was looking forward for some French onion soup. I've cooked the onion for about an hour already when I found out someone nicked my wine, all 3 bottles of them! There went my soup, because I couldnt pour whatever left from my Pineau de Charantes bottle as a substitute for white wine. Had I found out before starting cooking I might've experiment with some substitute ingredient for whatever missing like tonight, but that day I was so pissed I stopped cooking altogether.

Tonight I experimented making Enoki en papillotte. Not that great, but it was in the right direction as in the restaurant. I just put a bit too much rice vinegar and lime juice to substitute ponzu. Oh well, at least I'm cooking again. Next stop: Chawan Mushi & Salmon en papillotte. See the trend here?

Important Note To Self

After all these time, I made a rocky mistake. I forgot to divulge to my doctor all the medications I'm currently taking. Now, I'm paying for my stupid mistake. The very medication I thought that will have nothing to do with my cough is possibly the reason why my cough is getting worse. Brutally worse that it took me not to change my position to get rid the itchiness inside my throat. As soon as I've changed my position, the cough starts and can last for two hours, to the point I almost vomit with each cough. I havent been able to sleep in the last two nights since I took the new cough meds.

I've just realized it about an hour ago when I re-read the leaflet. Apparently my other meds increases the amount of serum in my cough meds, which, I think, making my ulcer worse and the expectorant part of the meds working above and beyond measure.

I called up the pharmacy but I guess the guys (I talked to two peeps) didnt really know what they are doing.  The bloke said I took the right amount of meds, but he couldnt tell me how much the interaction of the two meds will work in my body. Logically, if the interaction increases the amount of the serum, I overdosed my cough meds just by taking the prescribed amount of meds.

So, I've texted my doc. Still got no reply.

At this moment I'm wary of taking my other meds, but I have to since I'm under strict order to taking it until May by my other doc. Probably the best thing to do for the time being is not taking any cough meds until my doc is getting back to me.

Note to self: DIVULGE ALL YOUR MEDS!
ps: my doc said I have to lower my cough meds to a third of whatever the leaflet said. So be it. but in the meantime, still cant sleep. Grrr...