13th April 2015

Dear diary,

Today, we had decided to help out a friend out. Go grocery shopping at her area. The place was out of our comfort zone... but we went there anyways.

As we were heading there... the last traffic light to the grocer... there was a stalled car. We thought that the driver had slept. There were two other cars behind the stalled car. They had started to hon the car. We joined in later. The car finally moved.. and headed the same direction.

We were passing by the car... and did not think about it again. Until we arrived at the parking lot. The car behind us started to hon our car. To a point it got annoying.

When both cars were stopped due to a que, I started to stare at the car behind us. Just as I was turning away, I had noticed a flash from inside that car.

Smile, you are (not so) candid camera.

Hubby decided to stop the car... he got down and I followed suit.

I asked nicely why did the driver hon our car. And I requested for him to delete the photo.

He was under the impression that we were really behind him during the stalled car incident. He also refused to delete the photo. The wife had however agreed to delete the photo.

Needless to say, the wife had no intention to fight. Neither did I. Gave them salam and headed back to the car. Not once had I blurted swear words. I could... but then i didnt.

We bumped into the wife a couple of times... with her 2 children. I was appalled that the kids were in the car during the argument.

On hubby's side.. he managed to locate the car and spoke to the guy. The guy had pushed hubby... alas, hubby's powerful ability to work and think during stressful situations... the anger subsided.

We will meet again. I am sure.

A cup of coffee

It is nice to have a cup of joe... with a group of friends. People who could understand you.

It is even nicer when the barista decides that your cup of joe is a smiling face with cocoa hair.

Having cup of joe with a bit of art is normal. But given a cute one is priceless.

Extra Bitter Chocolate Chip Soft Cookies

It is one of those times that i started to have the mood to bake. So.. I start googling 'Soft Cookie Recipe' online.

There were quite a bit of recipes out there. But... i decided to try out this one. Mainly because she had quite an extensive explaination on her cookie making process. I like her tips. Really something to remember.

Quoting (or pasting) her tips:-

"Underbaked cookies are the secret to softness. Using cornstarch in the dough is another secret to softness, as well as the secret to thickness. Using more brown sugar than white sugar results in a moister, softer cookie.  Adding an extra egg yolk increases chewiness. Rolling the cookie dough balls to be taller than wider increases thickness. Using melted butter (and slightly more flour) increases chewiness. Chilling the dough results in a thicker cookie."

I did my first batch... and it was not too bad. Here's her recipe...

Ingredients:

    2 and 1/4 cups (280 grams) all-purpose flour, measured correctly
    1 teaspoon baking soda
    1 and 1/2 teaspoons cornstarch
    1/2 teaspoon salt
    3/4 cup (1.5 sticks or 170 grams) unsalted butter, melted
    3/4 cup (135 grams) light brown sugar, loosely packed
    1/2 cup (100 grams) granulated sugar
    1 large egg + 1 egg yolk*
    2 teaspoons vanilla extract
    1 cup (180 grams) semi-sweet chocolate chips or chocolate chunks

Directions:-

Toss together the flour, baking soda, cornstarch and salt in a large bowl. Set aside.

In a medium size bowl, whisk the melted butter, brown sugar, and white sugar together until no brown sugar lumps remain. Whisk in the egg, then the egg yolk. Finally, whisk in the vanilla. Pour the wet ingredients into the dry ingredients and mix together with a large spoon or rubber spatula.

The dough will be very soft, yet thick. Fold in the chocolate chips. They may not stick to the dough because of the melted butter, but do your best to have them evenly dispersed among the dough. Cover the dough and chill in the refrigerator for 2 hours, or up to 3 days.

Chilling is mandatory.

Take the dough out of the refrigerator and allow to slightly soften at room temperature for 10 minutes.

Preheat the oven to 325F degrees. Line two large baking sheets with parchment paper or silicone baking mats. Set aside.

Roll the dough into balls, about 3 Tablespoons of dough each. The dough will be crumbly, but the warmth of your hands will allow the balls to stay intact. Roll the cookie dough balls to be taller rather than wide, to ensure the cookies will bake up to be thick.

Bake the cookies for 11-12 minutes. The cookies will look very soft and underbaked. They will continue to bake on the cookie sheet. Allow to cool on the cookie sheet for 10 minutes before moving to a wire rack to cool completely.

Cookies stay soft and fresh for 7 whole days at room temperature. Cookies may be frozen up to 3 months. Rolled cookie dough may be frozen up to three months and baked in their frozen state for 12 minutes.

Additional Notes:

*Salted butter may be used instead. Reduce salt in the cookie dough to 1/4 teaspoon.

Room temperature egg + egg yolk are preferred for even disbursement.  Typically, if a recipe calls for room temperature or melted butter, it's a good idea to use room temperature eggs as well.  To bring eggs to room temperature quickly, simply place the whole eggs into a glass of warm water for 5 minutes.

Try it!

28th March 2014.

28/3/2014

Pt has relapsed lupus nephrithis and not responding to oral steroids.

For Xray today & 3 dose of

IV MIP 250mg --> today
31/3/2014
01/04/2014

Thank you.

Dr. Rizna

Relapsed : 21st February 2014

A month ago, I was getting ready to go for an event in Ipoh... Bandar Seri Iskandar, to be exact. I had volunteered to promote Safer Malaysia thru a talk at the shopping mall.

It was a Friday. Almost closing time. Preparing to go for a trip. Mind is set that way.

The exact moment was at 5pm. One boss in office and the other just went home. I got up... and noticed.

I relapsed.

Bloated feet. Frothy urine... the unsettling feeling. I knew I was back to battling the disease. SLE.

My last relapse was in 2009. It has been 6 years of clear from all signs of SLE.

2 days from my birthday.. a day away from my trip to Ipoh. I had to evaluate and think fast. What should I do...? I had to weight my odds. Should I get admitted in hospital? Should I increase my prednisalone (steroids) to 10mg?

It was a Friday. No matter what, if I get admitted, it would not make any difference. I am familiar to the hospital's protocols. Unless you are dying, which they would act a bit faster, the hospital would not treat your case as of importance.

I had a choice. My choice was to stop everything. Concentrate on the getting better part. OR... I could increase my meds on my own, which I had done once before... and continue living til the weekend is over. After all, I can only deal with the hospitals on clinic days - Thursdays and Fridays.

First things first... I had to go and inform my boss. It was easier to show my bloated feet. So, I did.

His reaction was, Oh Shit.

I explained. My reason of informing was to make sure that... if things go bad this weekend, possibility of ke getting admitted on Monday will be there. Visual of my bloated feet us enough to show that I am having the symptoms of relapse.

Needless to say... I had gotten the ball rolling. First step to healing.. is not eating the meds.. it is acknowledging that you have a problem.

I took a step not to mention my relapse to my mother or my sister. Reason being, I wanted to learn.

Call me selfish.. which I think I am learning that trait too... but, I needed to learn. I want to find out how I would cope with my illness. I needed to grow.

So it begins... my relapse saga.

And this will start my story again. The diary of an SLE patient.

Sarah Kambali.

I've not decided on the next chapter... deviate

This is a little deviation from my determination of making this BLOG into a novel-type thing. I have this aim of making it Chapter by Chapter so that when people read, they can see how I have progress. Furthermore, I do hope that one day I can publish a story on SLE experience as much as the people with heart disease or other problems publish theirs. Not to make money... but to share my experience.

The only reason why I had decided to blog today is because I think I owe to the rest of the people who has been checking regularly a little snip of what has happened to me.

I am still ALIVE and STABLE, thank you. I've been dealing with Life as we speak. Recently, there was a BIG turn of event in my personal life. One which I will only reveal when the day gets closer to the seal of the deal.

But... what I would like to share is my greatful feeling for those who seeks my help to understand the disease. I am touched that they are willing to help their friends/relatives on their emotional quest of discovering SLE.

Believe me, it's not a beautiful picture. Some I know have gave up on life upon knowing that the disease is CHRONIC. The mere word scares the daylights out of anyone.

But fret not... you're not alone. I feel the same. It's only with dedication of love and support from those who have been there in all my 5 years being diagnosed with SLE, have I come to the stage of living with the disease in harmony. Acceptance does not mean defeat... it means you acknowledge that you have a problem and is willing to give life a go.

Well...

Need to have my food now. Do feel free to check out this website :

http://www.lupusmalaysia.org/e/2008/06/pslem-featured-on-popular-tv-programme/

(I was featured in there)

Chapter 1 ~ Summing things UP ~

Sometimes, people forget... that's why it's always nice to have a summary of things. Elaborations can be seen in each Sub-topics below.

In my first subtopic... I had introduced myself. As to how I started to be diagnosed with SLE. "Introduction ~Chapter 1~ When I was diagnosed~" Here, I try out my best to make people understand and see how I was diagnosed. Everyone has different symptoms. Whilst a lot of people have "butterfly rashes", I don't. I have a balding problem and joint pains. Of all which can mean anything. I had to land on SLE; a chronic illness.

Next... "Chapter 1~Background Check (studying life)". This was where I had tried to bring your attention what type of person I am. My determination although I was having SLE. I don't ask praises... in fact, far from it. I hope by reading my determination, you can see that everyone can strive as hard, more over if you have a good health check. If I, a chronic patient can strive hard, what more you. For those who have SLE, I did it thus far... you can too.

Then... in "Chapter 1~Learning to live with pain". I lived through the pain. Months before I had the diagnostics, I had to bear with pain. Excruciating pain. But I gritted my teeth and lived through it. I didn't let the pain overtake my life. Studying was still studying...

When I had problems with my walking due to the results of Prednisalone... I started to use the wheelchair & walking aids. The journey was shown in "Chapter 1~Wheelchairs & walking aids". I had family, a bf and friends who helped a lot with my going about...

Recently, I had completed my two hips replacement... "Chapter 1~Replacing HIPS~".

I think I should head to my Chapter 2... and I'll start off with ~Chapter 2~ Medicines and its effects!~.

~This is the diary of Sarah Kambali, LL.B(Hons) IIUM, SLE Patient.~