BP65 - 26 JULAI 2009 : AHAD

The rain started early in the morning. I thought, "Hey... today would be a good day to buy 'the hard to get because the line's too long' Section 14 lontong! People would be too lazy to go out in the rain!"

I was no. 3 in the queue. I could have been no. 2 or no. 1, but I went first to buy Metro Ahad thinking that I would need something to pass the time.

When life gives you lemons... make lemonade!

I managed to do work... fighting off sleep most of the time but I succeed! I must be getting better, Alhamdulillah :)

Haris (son in law of Ibu Noraini, sister of Paman Salleh) called informing that he would be in UPM till Wednesday. He called from KLCC but he didn't know the program scheduled for him & 39 others who came along with him.

I thought of going to KLCC by LRT after 'Asr. He was supposed to call back so that arrangements could be made. Well, I fell asleep on the floor till 6.30pm while reading through Khairuddin's proposal! Zzz...

Osh-Azmi & kids dropped in on way back to Ipoh, after visiting Hanan. Then, Una-Mat & Syabil @ Uncle Pet (who'll be turning 4 years old next month!) came. Una's BP was pretty high (160/100). However, her pulse is low <70... that helps!

BP64 - 25 JULAI 2009 : SABTU

Went to TS hospital with Suami. I think the doctor could tell I was feeling tired & weak. I got 5 needles this time on my head & Suami said I was snoring away during the 20 minutes session.

After the session, we picked up Aiman to bring him to see Dr. Selva @ Bangsar. He was having fever... not surprising. Most likely, he got it from Amzar!

Dr Selve saw me for the first time since I got Bell's Palsy. Straight away he asked me, "Why is your face all puffed up?" So, told him what happened & he basically confirmed every bad thing prednisolone could do to a person... of course the effect differs depending on the person! He also told me that it would a few months to get my system back to normal.

When I went home I googled to find out what others got to say about the phase of getting off prednisolone. Some examples:

http://www.everydayhealth.com/blog/kelly-building-a-crohns-disease-community/prednisone-and-withdrawal/
April 5, 2007: Prednisone and withdrawal

Every week, I am supposed to go down 1 mg of prednisone. I like this therapy because I am going down slowly which my body seems to handle better, but it is bad because every week I go through withdrawal. I have heard some people (and some doctors) say that you can’t feel withdrawal from just a 1 mg decrease but I know that is not true for me. After about three to four days is when I usually will start to feel it. It seems like I have a harder time processing information and making sense of things. I have learned that I need to be more organized during these times because I am not able to do my typical five tasks at the same time routine. I have to focus on only one task at a time and make sure I outline what steps I have to do to complete them. I also become easily irritated and many times pick fights with my husband (mostly because I become a little irrational and obsessed).

Sometimes I make it through the withdrawal without noticing, but most of the time I feel it. I have also been having a lot of pain in my arms and in my body around the time that I decrease my prednisone. My rheumatologist says that it is from the decrease in the prednisone.

I have learned to warn my husband when I am going down on the prednisone. He is supposed to keep this in mind when I am acting crazy or get irrationally mad at him for things that make no difference to anything. Before, when I was on a really high dosage, I was going down 5 mg at a time but not every week. I would go down, and then have to remain at that level for a few weeks until I could go down again. Now that I am going down every week, I feel that it is hard work to keep myself under control and calm because it is a few days out of every week that I have to work harder.

But I think that it is worth it because I am getting down off the steroids, and all I want is to get off of them. I know I say that in almost every blog, and it is a daily thought. One day, I will not take the blasted prednisone.

But, one day at a time!!
Or as they say in French – petit a petit (little by little –or gradually)

There are many more...
The important thing is at least I know what I'm going through is normal :)

BP63 - 24 JULAI 2009 : JUMAAT

Woke up about 5 am.
Did my solat Isya'. Alhamdulillah, still alive...

Oh no... there were so many things I thought I wanted to do for today.
I had already scheduled to meet my 8 project students, 1st year students under my wings (4 international & 3 Msians), then the 2nd year students!
There would also be practical session in the afternoon.

Adoi... belum lagi janji dengan Zulfa!

I hope she would go easy on me & understand the situation that I'm in.
Seriously, I could fall asleep while I'm sms-ing!

BP62 - 23 JULAI 2009 : KHAMIS

Lecture in the morning & practical session in the afternoon.
What a tiring day.

Accidentally went to sleep at 8pm till 5am !!

The 'herotness' of my face is almost gone but the body is feeling like a sick body!

BP61 - 22 JULAI 2009 : RABU

BP60 - 21 JULAI 2009 : SELASA

BP59 - 20 JULAI 2009 : ISNIN

Treated the group to lunch at K's Restaurant. MdNoor @RA will be officially leaving the group end of this month. The other RA that went away before this was Wan Adriyani who's currently doing her PhD in UK. It was also to thank all of them for their support that was in many forms, including helping me carry my stuff up & down!!

BP58 - 19 JULAI 2009 : AHAD

BP57 - 18 JULAI 2009 : SABTU

BP56 - 17 JULAI 2009 : JUMAAT

BP55 - 16 JULAI 2009 : KHAMIS

BP54 - 15 JULAI 2009 : RABU

BP53 - 14 JULAI 2009 : SELASA

Day 2 off prednisolone.

HAPPY B'DAY KAK ERAH!
Muga ALLAH SWT terus merahmati kehidupan dengan semua yang baik-baik untuk dunia & akhirat.
We have sort of celebrated her b'day this weekend with a carrot cake ! The cake cuting was done after the meeting about Muaz's up coming engagement with Zura (3 October 2009, InsyaAllah -- IPOH MALI)

BP52 - 13 JULAI 2009 : ISNIN

Day 1 off prednisolonone

As usual, early in the morning Suami sent me for the facial electrotherapy @ UMMC.
Met CT Aishah but have to rush off, ie no breakfast with her. Class & all :(

I seriously am so very tired, especially by late afternoon.
Part of me felt maybe, I should just pop 1 of the blue colored prednisolone pills into my mouth!

It doesn't even give me a high... just a healthy + 'get up & go' feeling. Think of what goes on in the mind of an addict!

Had lunch with 3 of my former project students at the nearby KFC. Asked them about their Industrial Training experience & what next after B.Sc. (Science Biohealth)... very interesting, e.g one was at this place that normally gave about $300/month to a student who did 3 months of Industrial Training with them, but since this girl only did a 2 months worth of Industrial Training... she wasn't paid a single cent!! Hmm...

http://angel-angeline-angelicious.blogspot.com/2009/07/when-life-gives-you-lemon-make-lemonade.html

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http://www.youtube.com/watch?v=8dtSRvyfxc4http://www.youtube.com/watch?v=8dtSRvyfxc4

BP51 - 12 JULAI 2009: AHAD

Day 9 tapering off prednisolonone : 5 mg (1 pill)

I went early to my sekolah menengah gathering, since there was also the invitation of Adli Isa's 1st b'day later in the day.
Before that, managed to get T.Mak ready so that AbangEm could pick her up in his new MyVi.

Rather dissapointing because from our batch there were only Mawar, Ida & me. Of course there were others... Amy's batch turned up in full force!
Found out that Puan Arfah had Bell's Palsy twice & another teacher had it when she was small. Didn't get to talk to them too long because so many former students/teachers also wanted to say HELLO to them.
I ended up only leaving the place at 3.30pm.

Solat Zohor & we're off to the b'day party.
Well... we got lost... again. We called up Adli's father & he was kind enough to pick us up. Phew :)
We were one of the first to leave. We had to rush for solat Asar & I was also feeling very tired already.
Told Kak Erah who wanted to use the house for a PP family meeting about Muaz's engagement to take care of the food, etc.

After solat Maghrib, I slept & when I woke up... they have had their makan (Syed's beriyani Bukhari, mee goreng GI's Yasin, sate, etc) & the meeting had started (in the next house).
Looked like everything went well with Kak Erah chairing the meeting with others interrupting with serious & silly suggestions (eg having ants as the decoration for each hantaran because Naufal will do his thesis on ants!)

BP50 - 11 JULAI 2009 : SABTU

Day 8 tapering off prednisolonone : 5 mg (1 pill)

Slightly after midnight Durrah woke up menggeletar, but high fever. We didn't want to take chances, so brought her to UMMC.

Well... viral fever. NOT the dreaded H1N1, Alhamdulillah.

BP48 - 9 JULAI 2009 : KHAMIS

Day 7 tapering off prednisolonone : 10 mg (2 pills)

Would push myself further today... lecture in the morning & a quick lab late afternoon.

BP49 - 10 JULAI 2009 : JUMAAT

Day 7 tapering off prednisolonone : 10 mg (2 pills)

Went to TS Hospital for acupuncture session. CT Aishah went along to see what could be done to her situation.

We went to F&B cafe at PD after that! Wonderful cheesecake... :)

BP47 - 8 JULAI 2009 : RABU

Day 6 tapering off prednisolonone : 15 mg (3 pills)

Another 1st that I had to face: Neuro lecture

BP46 - 7 JULAI 2009 : SELASA

Day 5 tapering off prednisolonone : 15 mg (3 pills)

Went straight from home for my 1st Histo lecture @ DK Ixora.
Couldn't help being anxious... Could I physically deliver a 50 minutes lecture? Would it be too much for my body? I knew my speech could already be understood, but I wasn't sure whether having to talk non-stop for long would cause herotness of my face becoming worse? Too gruesome?

Again those many pairs of eyes were on me. There were about 80 students.
My 1st slide was actually on my situation.
As usual I prefer to deal with something head on...

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BP45 - 6 JULAI 2009 : ISNIN

Day 4 tapering off prednisolonone : 20 mg (4 pills)

After sending Durrah to her sekolah ugama, I went straight to work. Suami was already waiting for me at the parking lot up front of the department to send me to UMMC for my faicial electrotherapy & also an appointment with the E&T group.

By abot 9.30am I was done with the electrotherapy. Met CT who was waiting for her name to be called in. Told her we couldn't go to breakfast since not only I had to rush for my E&T appointment, I also had a briefing for the new students @11.30am!

Quickly registered @ E&T. While waiting, I was pondering about how I'd go about in doing the briefing. I had 2 parts of power point presentations done up; 'introduction to who's who' & 'academic matters'. I would have to do the latter & I was mulling about whether I should contact Eda & make her do the first part. Originally, I had asked Yati but with her mum doing an angioplasty procedure today... Yati's place should be with her MOTHER!

By 10.30am I decided that Edah should do it & started making phone calls-arrangements.

I finally got in to see DrL @ 11am. DrTS was on emergency leave. Commended DrL on her suggestions about 'directly putting a tape on my right eye' + me going to RUKA (it was then I got new dosage for my BP & it had been under control since then, Alhamdulillah).

Took a taxi back to where my car was parked & rushed to the lecture hall where the briefing had been scheduled.
To be honest, I was feeling feeling anxious about this whole event.
It was going to be my 1st event going in front of a lecture hall of students.
All in all there should be 35 new students + 20 of the committee members of the student's BH club. Staff members of the program (2 tutors + 4 support staff + 6 academic staff) should also be joining the event. Some already knew about my Bell's Palsy & this event would give them a chance to see for themselves how I looked like.

When I came into the hall, they were there already except for the new students who're still stuck in another briefing. I took time to address the BH club about the kind of assistance that I hope they could give, etc. From their facial expression, I seriously doubt that they really heard what I was saying at the beginning. Some looked like they were about to burst into tears...

Then the new students came & the whole event went well. It was good that Eda did the first part of the briefing. She was FABULOUS & FUNNY... the students loved her!

By late afternoon, I was feeling like I need to lie down...
However, 5 foreign students were brought to me; 3 of them for BH program (1 Indonesian, 1 Somalian & I Jordan) & the other 2 going to other programs (Bioinformatics & Microbiology).
So, I gave them 'a quick' briefing of what was given earlier by both me & Eda.

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BP44 - 5 JULAI 2009 : AHAD

Day 3 tapering off prednisolonone : 20 mg (4 pills)

BP43 - 4 JULAI 2009 : SABTU

Day 2 tapering off prednisolonone : 25 mg (5 pills)

Woke up later than usual. Apa lagi, Suami purposely woke me up late! Of course, he did it because he felt that I needed the sleep!

Suami had PIBG meeting today.
Amzar in Nilai this weekend for an activity & Aiman had Carnival Day to raise $. His class was going to sell Domino's pizza!
So, went to TS Hospital with Durrah as my companion :)
We set out a bit late from home & so by the time we got there it was already 9.30am & had to park at the visitors 2nd level parking area. But, actually, it's better than the normal place we parked. Each lot is big & there were ample spaces available. Of course we had to walk a bit, but it was OK.

We were than scanned at the entrance. Today, it was round blue labels :)

The place was rather crowded than weekdays. However, as usual, it didn't take long. Durrah said I had 25 needles altogether. One number up than the last time! However, when the good doctor poked 2 needles on my right leg, I could feel a surge like an electrical shock being passed into my nerve. Maybe it had something to do with the muscle pain I was having this morning, due to the slight fall I had yesterday on my way towards the parking lot at work.

As usual, once done I would just get out of KL quickly before the jam.
As a token of my appreciation to Durrah, treated her to big breakfast at Bangsar Village, then to MPH for her to spend her $. She bought the novel INKHEART.
I really have to be careful. She didn't do so well in her Penulisan BM in the last exam!
After breakfast I took my 5x5mg (i.e. 25mg) Prednisolone, ie this would be my 2nd day of cutting down the steroid which had been in my body FAR too long!

Bought different types of vegetables at the grocer. I now heaped my plate with vegetables :)
I had to watch the blood glucose.

When we arrived home, woke T.Mak up for a lunch of take away Nando's. The lemon & herbs flavor with it's fries, mediterranean rice, cole slaw & salad actually is rather similar to something one could buy at the foodcourt in the Hilton's Complex in front of Masjidil Haram! \
So, now you know why I loved Nando's :)

My blood pressure was on the low side (compared to the recent weeks).
So, I only took half of the Myacardis.
Deep down, I was hoping that my test-tube body was on its way of getting back to normal, InsyaAllah.

I took time after lunch to re-organize the blog.
Had it really been 43 days since the onset of Bell's Palsy?

I hope people do realize that the entries were written later than the events, themselves. I relied on sms in my phone for facts/notes. Unfortunately, those notes were gone when the phone kena air.

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BP42 - 3 JULAI 2009 - JUMAAT

In my blurry state of mind (macam dalam pantang) I agreed to lunch with a few girl frineds from Chico at a Chinese Muslim restaurant in KJ... when actually:
a) it was my duty to send Durrah to school (school starts at 2 pm on Fridays) &
b) there's also one of my more important appointment with ProfKJG of UMMC at 2pm!
The last time I saw him was way back in June.
Kena buat clone!

Well, told Suami I just had to make sure that I get to UMMC before the clinic closed. Certainly wouldn't want to miss this particular appointment.

There was also the driving, because with my blurry right eye, driving in unfamiliar territory would be BAD!
Luckily, Saadah was back but she had to go ASM after lunch.
Like I told Nina "sempat tak sempat... kita sempatkan aja..."
So, the arrangement was for me to sedn Durrah very early to school... then Nina & I would get a ride from Saadah. Suami would pick us up after lunch to send us to UMMC. Nina would get her way back from there.

Kiah, Yusri & Yam had their lunch already when we got there. Umi couldn't make it due to her younger sister pulang ke rahmatullah.
Al Fatihah!
Topics of conversation was on status of health (mine, Rahman's, Yam's, Saadah's & our parents ) + health food + Michael Jackson + former Chico's Charlie's angel is now "an Amirah" (KEEP UP THE GOOD WORK) + etc.
Kiah, Yusri & Nina are healthy, Alhamdulillah!
It was such a short lunch, so maybe Kiah will organize another one maybe next month, huh?

Saadah dropped me at UMMC & after I registered myself, I went to my favourite surau in UMMC, up at the 5th floor!
My number was still not up when I got back down to the clinic at level 1.
Then, my number was flashed but I was assigned another doctor.
Noo... I wanted to see Prof KJG, so that there would be continuity. When I told that to the ladies at the registration table, I was told that I should had requested.
Then, I saw Prof KJG coming out of his no. 35 room. After I told him of my case he went lover to room no. 32 to get my file though of course he politely told me that I could also see the other doctor & that she's a very good doctor, etc.
Anyway, I just had to wait some more because there were others ahead of me to see him. I ended up getting to know the lady who was to see him before me: a Parkinson's Disease patient.

ProfKJG told me to taper off my steroid intake:
So, from 40mg (which I actually had done for a week, under suggestion of DrTS) I should be doing:
30mg (6 pills) for 2 days then
20mg (4 pills) for 2 days then
15mg (3 pills) for 2 days then
10mg (2 pills) for 2 days then
5mg (1 pill) for 2 days
before stopping for good.

Well, that morning I dah taken 5 pills (25mg) & I thought I would take the other 3 pills (15mg) after dinner.
I decided, well since this steroid was an unfriendly alien in my body... I would just go ahead & stopped my tapering off at 5 pills (25mg), ie 5 mg less than what was being suggested by ProfKJG :)

Prof KJG told me that I had another 30-40% more to fully recover.
I told him, "It doesn't really matter. I'll continue as as I have. After all I've organized 2 half-day seminar for the program post-grad students this week & last week I was attending a conference :)"

I was so delighted by the news that I could taper off the steroid... I was about to walk back to the department! Af course it was too far & luckily a taxi was willing to take me. Did some work at the office & went back late for the first time since I got the Bell's Palsy.

Unfortunately, the day had been long & for my current condition the activities were more than I could handle (?).
As I wss walking to the car which I parked up front... I took a wrong step & fell. Scratched my right knee :(



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EVEN THE SUN & THE EARTH DON'T LAST FOREVER... Dust in the wind...

http://www.youtube.com/watch?v=2DSKHZ1TcZE

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BP41 - 2 JULAI 2009 - KHAMIS

BP40 - 1 JULAI 2009 : RABU

BP39 - 30 JUN 2009 : SELASA

BP38 - 29 JUN 2009 : ISNIN

BP37 - 28 JUN 2009 : AHAD

BP36 - 27 JUN 2009 : SABTU

BP31-->35 - (22-->26 JUN 2009) : ISNIN -->JUMAAT

For the first time I skipped my facial electrotherapy Monday morning session at UMMC. Instead, I was boarding the LRT from Taman Jaya after parking BFX at the last slot in the parking area. No place to sit, but luckily I was at a corner & so I could lean a bit.
I was on my way to KLCC Convention Center to attend the 14th ICOT!

Did on the spot registration because it seemed the online registration I did on Friday did not go through. After quickly sampling the snacks available, I went straight to Plenary Hall for the keynote speaker by Gardner (to be followed by the opening Ceremony).
Surprise... surprise... guess who happened to be at the door 'receiving' me. THE CONVENOR of the conference, Net's sister, herself!
The next surprise... as I was walking up the aisle, trying to get a seat... someone called up my name. It was Hazami, a close friend. Ada gang!

So, that's what I did for the next 5 days, except for Tuesday.
I'd be in Plenary Hall for the keynote speakers at 9am & I normally stayed on till late afternoon. Lunch was provided.
It was rather tiring, especially on days that I didn't get a seat in LRT... but the fact that I got to be in attendance & listening to individuals like Buzan & de Bono was well worth it.
Net's sister & her committee member did very well! They bid to be the host all the way in 2005! I cringed at *the challenges they had to face to manage an event of this size with big local & international names.
*2 small examples that happened right in front of my eyes:
a) A participant from Indonesia complaining to the convenor the fact that the organizer failed to supply face masks to each participant (in reference to the H1N1). Convenor looked frazzled... but, I thought the guy had a point!
b) A local speaker complaining that she felt very dissappointed that at an event billed as 'a workshop', it did not take place as her expectation about what a workshop should be. Exasperated convenor said something about 'one couldn't actually dictate these big names & 'workshop' could mean differently to individuals of different background'. Good answer :)

During the closing ceremony, there was a standing ovation for her & lots of accolades. Net's sister, the convenor, was all teary eyed & surely very thankful that she's passing on the baton to the next convenor, another lady, for the 15th ICOT in 2011 to be held in Belfast.

On Tuesday, I was at the department for 2 meetings -- agihan projek penyelidikan called by Yati & a Buku Panduan meeting for coordinators. I missed the talk by TunM. He was the main speaker for Tuesday.
On that day, I forced Zulfa & Amzari to use my pass to go. It was actually a conference for their kind of work & I wanted them to have a feel of attending a big conference.

I was very grateful that I was given the rezeki to attend a talk & get to know a couple who for the past 6 years had taken care their eldest son who had brain injury. I shared my experience at the session. We also discussed about the lack of support group available & I volunteered myself to be part of the association that they are going to form. Most probably, I would invite someone from their group for my Diseases of the Nervous System. I had also urged them to write a book of whatever aspect of their experience that they wanted to share with the public.

Of course another big news is the death of Michael Jackson @ Mikaeel (There were reports that he converted to Islam in November 2008).
Al Fatihah.
However, there are also some write ups against this news.

http://trueslant.com/alieteraz/2009/06/26/was-michael-jackson-muslim-and-his-islamic-burial/

I also 'grew up' with Michael Jackson's songs, especially when I was studying in Chico. Song like "She's Out Of My Life" will forever be stuck in my mind... Saadah you almost drove me crazy playing that song over & over again!

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a href="http://www.youtube.com/watch?v=BD5tqRqkWCI&feature=related">
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BP30 - 21 JUN 2009 : AHAD

BP29 - 20 JUN 2009 : SABTU

BP28 - 19 JUN 2009 : JUMAAT

BP27 - 18 JUN 2009 : KHAMIS

BP26 - 17 JUN 2009 : RABU

BP25 - 16 JUN 2009 : SELASA

BP24 - 15 JUN 2009 : ISNIN

BP23 - 14 JUN 2009 : AHAD

!

BP22 - 13 JUN 2009 : SABTU

Went to TS Hospital with husband since I planned to attend ICOT next week. This was the first time that I went for an acupuncture session on a Saturday.
As we came in at teh door, body temperature was checked. A small yellow round sticker was put on each of our clothing to indicate that we passed the test :)
There were many people & both of us thought we were in for a long wait.
Yet, just as I was about to sit at the waiting area in fron of Room 120, a nurse waived to me & asked me to come in to a 3 beds room. There were already 2 elederly Chinese ladies & so I became the 3rd person!
Rezeki, Alhamdullillah :)
However, Suami was not allowed to come in.

We went out of KL straight away & headed to Bangsar Village for breakfast at one of the cafe located within the grocery store. 2 big breakfasts :)

BP21 - 12 JUN 2009 : JUMAAT