I have many unfinished drafts with the hope of posting them here one day. Looks like they are for my eyes only..for now. I'm just too lazy to finish those drafts. Probably this will end up as a draft too...

 

Had a very interesting day today. Breakfast at Morib, enjoyed the morning breeze in Morib beach, bought some famous kerepek from the kerepek house in Kanchong Darat, drove to Sri Cheeding (luckily I didn't bump into some Mangosteen rogues), visited the OA church in Busut Baru, visited all the OA villages (Sri Cheeding, Kemandol, Pulau Kempas). What made it more pleasant was that I spent it together with my parents.

 

My heart goes out for the OA kids. I now understand why they are so often late to school. Their houses are about less than 30 km from the main road and then about 10km to Mangosteen school. What's worst  is, these kids have to walk some 3km out of their kampong to wait for the school bus. Despite all the trouble and time spent, these kids have almost full attendance in school. They put the other students to shame.

***

 

It's time to buck up.

 I feel that I am becoming stupid. It's as if my mind is like a desert, devoid of life. It's like you can almost hear the crickets chirping in a quiet place. I feel like my life is wasting away. There are so many changes happening to me now, physically. Loss of hair. Loss of memory. It affects me sometimes, but thank God not all the time. I just get emotional for a while and then I let it pass and move on.

 

***

 

 

 

 

Smiles

 

 

***

I am currently on the following medications.

10 mg prednisolone, 5 pills of Cellcept, 2 pills of Plaquenil, 40mg Micardis, Calciterol, and a whole lot of supplements : Calcium, Omega Fish Oil, Iron, Folic Acid, B-Complex and Co-Quinone.

 

My doctor wants to try me on Benlysta hopefully by next month. I really do not know the outcome of it but reading the long list of side effects is really depressing....

 

My brother says it's good. All doctors will say it's good without emphasizing on the side effects.

 

:(

 

Mrs. Sam!

Adele finally marries!

Living with Lupus.

 

I have not been writing anything about it or even mentioning the word to everyone else.

Maybe I am still coming into terms with it after almost 5 years! Can you imagine, I am in my 5th year already!

 

So let's see how far I have come.

I have endured a lot of mental trauma from all the hospital visits and receiving bad news, one after another from the doctor, the increase and decrease in medications especially steroids. To those who see me so often, you may ask "what mental trauma?! You always seem well, but maybe a little grumpy, that's all. So what mental trauma are you talking about?"

 

You don't know how I feel inside.

This excerpt from a book (Despite Lupus) sums it up so well.

 

 

"Think back to the hardships you’ve encountered up to this point. Beyond the physical torment caused by joint pain, fevers, swelling, skin rashes, poor circulation, chest pain, headaches, sore throat, swollen glands, photosensitivity, heartburn, mysterious lumps and bruises, dizziness, nausea, infections, kidney, heart and lung problems, you have tolerated enormous mental trauma including: the embarrassment of hair loss, memory problems, and cloudy thinking; the inconsistent and inexplicable nature of your symptoms; the sacrificed activities, the missed little moments and forgone milestones. Consider the effort that lupus has demanded from you to attend to the never-ending doctor’s visits, medical tests, and health questionnaires. (Admit it: those hospital admittance papers and new patient forms can be a major pain, especially when you’re checking off every single box under “Symptoms experienced in the last three months.” You even have to write in a few that they’ve left off the sheet, don’t you?) By anyone’s standards, you’ve done your time with hardship, and you’re an expert at enduring. Now let’s turn to the future. It’s time to strive for more. It’s time to strive to be well."

 

The highlighted words are symptoms I so often face.

 

Looking back at the past five years, Lupus has taught me so many things. I don't know how to mention it all here. So often I had to force myself to accept that I am not well and I need treatment as soon as possible. Anything can happen. I may be fine one day and be very sick the next day and I will be 'forced' to see my doctor.

 

'Force'. As I reflect on this word, I realise that the 'driving force' that keeps me going is God's power. It is truly an amazing thing to know that my sanity in still intact despite of all that is going on inside me. Yeah, I have blamed God so many times...with tears and all. Nothing changed. Lupus is still there....the only difference is that God calmly assures me that one day, there will be no more tears and sadness. All will be well.

 

Today I am thankful I don't get major flares like how I used to 2 years ago. I have not been on steroids IV drips for so long. Nowadays, admittance into hospital is due to infection. I have not felt extremely lethargic but I still do feel tired sometimes. However, I am experiencing a few complications. I already have scarring in my kidneys which causes slight protein leakage. Thankfully it is not blood protein. There are some retinal changes in my eyes and I have a little cataract. My eyesight has deteriorated a bit and I am considering of wearing specs...soon. My left ear is very slightly blocked and I have a very mild form of sinusitis. I have lost a lot of weight for the past 6 months.

 

But,

 

I look well on the outside but thinner...I can still do my daily chores. I can still teach ( and shout ). I can still live an almost normal life.

 

Not easy you know...

to be always thinking of what might happen next. It's like having a time bomb inside you.

 

Hope to blog more about this in my later posts.

 

"....you’ve done your time with hardship, and you’re an expert at enduring. Now let’s turn to the future. It’s time to strive for more. It’s time to strive to be well."
http://despitelupus.blogspot.com/

 

 

 

 

 



A gruesome discovery

Naomi. Not so little anymore. I love her curly locks.

Started off my new year with the discovery of a gruesome murder at the William residence. Loopy and Potty brutally murdered a poor, young cat at 3am. Their barks woke me up and I was thinking to myself  'oh, no..hope it's not another cobra'. Then Dad woke up and had a  look outside and saw a cat on the ladder. It was so terrified that it ran and hid underneath the car. Wrong move. Wrong timing. Loopy and his accomplice managed to bite it. And then it died.

Both murder suspects where then apprehended and chained the whole morning and were released at approximately 12pm. They were found to be innocent. The defense team won on the account that suspects were merely protecting the house of their beloved owner.

The murderers struck again.

At approximately 6.30pm, a body of a squirrel was discovered at the William residence. Both suspects were seated next to body, feeling proud of their actions. Both suspects were then apprehended and questioned thoroughly. They were again found to be innocent. The defense team won again, on the account that the two suspects were merely protecting their dignity and honour.

What matters most.

Only with God is there a new way, a new beginning.

Leave your fear behind. Look up at the One who has given you a new beginning. Through him you will forget everything else.

The coming year will be a share of fear, guilt and hardship. But Let it be, our fear, guilt, and hardship a year spent with Christ. Let our new beginning with Christ be followed by a story of going with Christ.

What that means is beginning each day with Him. That is what matters.

Dietrich Bonhoeffer.

Happy new year, AJW. 

Remember what Mummy told certain people who were rather anxious of my birth because she was 40 and there were high risks of an abnormal development?

"God will take care of her"

God took care of me and He will do so for eternity.

Please let me go.

I really need to stop living in my dreams and stop hoping for a miracle to happen. 

Regrets.

There's no time for regrets but how can one not have the feeling of being regretful. Is it possible to be regretful for an action that was done unintentionally?

I may have unintentionally scared certain people away and this makes me feel so regretful. I should have behaved or spoke in a certain way...I might not end up the in this situation I am in today.

I may have also unintentionally scared certain boys away because of what I have in me and this makes me feel..not regretful, but sad. I understand....I mean, how many of us want to end up with someone with Lupus or Multiple Sceloris or a debilitating disease? It's a tough decision.

So how do I live everyday knowing that I may never have a family of my own or a chance to be with someone for the rest of my life? (the personification of that someone comes into my mind)

"Aloneness does not have to mean loneliness" - Josh Grogan author of 'Marley ans Me)

God is enough.

and some dogs too....

May He give me the strength to face whatever the future holds for me.

Stuck

When you like someone and that person doesn't like you back, you take such a long time to move on....because you want to be with somebody like that person. And there is a high probability that you are going to remain single forever unless you meet somebody like him/her...because deep down, you still want to be with the actual person, not a personification of him/her.

Such a sad way of living my life.

Sometimes, I give excuses to myself for feeling like this. "Oh it's because of the medicine, the raging hormones, the stress at school". Maybe those emotions are true regardless of all those external/internal influences....

Waiting.

No where to fly to....

No one to fly with.

Ceasarea and Joppa

Aqueduct built by Herod

Swimming pool!

King Herod's playground.

On the way to Joppa

Tel Aviv