Direct links

15 Sep

Hello there!

This post will be on top of all my other posts so that it’ll be easier for new readers.

If you’re interested to know more about my story, here are some links.
Be sure to read my first few entries in Nov-Dec 2012.

https://oceansizedlovee.wordpress.com/2013/01/ [my first Anti-NMDA experience]
https://oceansizedlovee.wordpress.com/2013/03/ [my relapse]
https://oceansizedlovee.wordpress.com/2014/02/22/world-encephalitis-day/ [raising awareness]

Through Facebook, I found Liz Molly from UK. She too is a survivor and has since done a ton to raise awareness! Here is a link to her blog. She has collaborated other links too. Do check them out if keen!
http://mybrokenbrain.org/resources/useful-blogs/

I found Ceri through Facebook too. She is from UK as well. She has informative stuff on NMDA on her blog so do spend some time visiting her site!
http://ceriphillipa.wordpress.com/tag/encephalitis/

Alright, I hope this helps!

Feb update

25 Feb

Hello hello!

I can’t believe February is coming to an end! How has this month been for you guys?

Well for myself, I celebrated Chinese New Year whereby I caught up with my relatives and friends over CNY goodies and some gambling. I also had a good one week break from work, something that I was looking forward since last Christmas! Haha.

I’m clearing my leave today therefore, updating this dying blog of mine. Hmm anyway my main purpose of today’s post is that World Encephalitis Day was just two days back. I didn’t manage to post anything on FB or Instagram but will do so soon. Based on my previous post, I mentioned that my dad and I would be meeting a mother whose daughter was recently diagnosed with NMDA encephalitis too. It was a good sharing experience and I hope our discussion has helped them one way or another. She is now discharged and recovering slowly but surely and we have our parents, family, friends and God to thank for.

As for myself, I have been medicine free for two months now. All has been good. I guess I am in the remission stage? I’m always asking my neurologist whether has a cure been found or has there been any new research done up? Speaking about that, my next appt with him would be in March so hope all goes well!

Alright, I shall be off now to grab some lunch and enjoy the rest of my off day😀

Thanks for your time dear readers!

Love, D

 

 

 

Medicine FREE :D

21 Jan

Hello dear readers!

Once again, I’m terribly sorry for the lack of updates to this dying blog.

How has your new year been? Good or even better I hope!

For myself, all has been great. My family and I returned from Phuket few days back. It was a good break for all of us. Work has occupied 80% of my time? So Phuket was where I really felt relaxed. Wished it could last forever.

Anyway, the purpose of today’s post is to update you guys on my medical status and the upcoming World Encephalitis Day happening on 22 Feb 2016.

So last Dec, my neurologist has agreed to stop my immunosuppressant (Azathioprine), which I was on for close to two to three years. It was the best Christmas gift ever. Thank you everyone for your constant prayers. You may want to know if I noticed any changes/difference behaviour wise. I still get slight headaches though, I’m still monitoring. I’m just so relieved that I’m medicine free! (:

Next up, World Encephalitis Day – 22 Feb 2016! 

For first time readers, you may want to read this post in 2014>>https://oceansizedlovee.wordpress.com/2014/02/22/world-encephalitis-day/

Speaking about raising awareness on Anti-NMDA Receptor Encephalitis, someone came across my story in our local newspaper, Weekender. It was published in 2013. This is the link to my story>>https://oceansizedlovee.wordpress.com/2013/07/22/in-her-shoes/

Thanks to the ever powerful source of social media, someone contacted me, keen to know more about my experiences etc. It turns out that his friend is currently suffering from NMDA too. Just when I thought no one was reading my blog, I was wrong. He came across the article while researching online and I’m glad he did. My father and I will be meeting her mother this afternoon to help her with whatever doubts and questions that she has. I wonder how I would feel upon visiting her. Will memories of my hospitalisation come back? What kind of thoughts would come cross my mind.

I shall leave all that till later. I just want to help this family get through this period of time. Hoping my dad (he can give a parent’s perspective) and mine can help in whatever way possible.

Once again, I’d like to thank all my loved ones especially my family who stood by me during this entire journey. We all have gone through so much, thank you for your sacrifices made. It is their continuous encouragement and support that have made me come this far today. Most of all, thanks to the greatest Man above.

Alright, I’m done here. Thanks for your time dear readers!

Love, D.

Wisdom tooth fairy?

31 Jul

Hello hello hello!

So I had surgery on my bottom right wisdom tooth two days ago.

And yes, THE PAIN I experienced oh my goodness.

I shouldn’t have seen the needle, that thin LONG needle (4 in total!!) that the dentist used to numb my gums before surgery.I don’t remember my previous surgery being this painful but anyway I survived so all’s good! Forced myself not to take painkillers as I had bad experiences with it. I must say I’m quite amazed at how quick my dentist extracted both my teeth out. A total of 15-20mins? My wisdom tooth was lying sideways therefore it had to be removed in pieces.The sound of drilling is still pretty clear in my head. I’m just lucky and thank God for a successful surgery.

So my dentist gave me 5 days MC but I will probably be back at work tmr. The pain has reduced quite abit, but still hurts a little when I swallow as there are many nerves surrounding that area. Oh and yes, my lower cheek is still a little swollen. Hope it gets better tmr!

Okay onto my new pastry job! Its been two months already, wow!

Am I happy with it? Well like everyone else, I have my good and bad days. But I must say I’m lucky to have good, supportive colleagues. Learning wise, I still have much to learn so I have to continue to think positively, focus on my responsibilities and prove to chef I am capable of doing more. I will probably be more busy from end Aug till end Sep due to the mooncake festival. I gotta prepare myself for more late days. Nowadays, my body clock auto ‘wakes up’ at 530am? even on my off days! Thankfully I can resume my sleep most of the time.

I think it’s still too early to know whether this is the right job for me but I told myself to stick to this for at least a year. Something’s telling me that I should do social work but I know it isn’t easy. Qualification is needed meaning going back to school, getting proper qualifications etc. If you refer to some of my previous posts, I’ve shared that I always wanted to give back to society. Having my life back on track ever since my recovery since 2013, I always had that intention of giving back to society be it in a small or big way. I registered myself for an event in which the organisers will explain how we, young adults can live out our social mission so I hope I will benefit from that! Perhaps I can do start off doing social work voluntarily? Priority is my pastry job, yes yes yes. However, I feel I will definitely gain more self-actualisation from doing social work. Who knows what the future will bring uh?! Oh well, I quote my mum “just leave it in the Lord’s hands”. So that’s what I’m gonna do!

Alrighty ohh yes! I have another thing to share with you readers.

For those whom have read my old posts on my recovery stage, you should know that I have an auto immune condition called Anti-NMDA receptor encephalitis. Skip forward till June, I met up with my auto immune Singapore support group I joined (found through FB). A few of us met up over lunch. Although we do not have similar conditions, it was a good two hours, listening and sharing our different stories. I learnt so much during that gathering. We shared similar feelings, thoughts etc. I guess I’m really grateful to have met them. I hope we all get a cure one day.

Thanks for your time dear readers!

Till next time (:

Love, D

Approaching a new adventure

13 May

Gooooood morning dear followers and new readers!

I’m finally back to update this neglected space, sorry for the lack of updates.

Starting off, the most important highlight for me would be my 18 months of pastry school came to an end in April. It ended off  with each student presenting their dish to invited guests, family and friends. As always, my family was there to give their utmost support and I’m very grateful for that. If it weren’t for them, I’ll probably would not be in this industry.

You may ask how I feel about leaving school. Well, it’s a mixed feeling. I’m definitely happy to be moving onto the next chapter in life, pursuing my passion for pastry. However, it’s also a closing to this 18 months worth of close friendship with my classmates. Yes, I am upset we won’t be able to see each other as often as we move on with our separate lives.

I had and still have a close bond with some of them. To be honest, I did not think that I’d have such a close bunch with me. Thanks to the Man above for always providing me with what He thinks is best for me.

Speaking of the Almighty, his wondrous works has yet again worked for me. He has given me the job that I’ve been looking for! I will be commencing next Monday. I am so so thrilled yet nervous for my first day. I am definitely hoping for a smooth going first week, absorbing whatever I can from my Chef like a sponge. So hello to 5am mornings!! Lets hope this is the right job for me and remember to enjoy what I’m doing! It is only when you have the right attitude, can you bring success (money wise or self wise).

For now, all I can say is that most of the time, things won’t just appear in front of you. You have to chase and work for it, just like how I made sure I got enrolled into school as I wasn’t getting a reply from them after submitting my application. I’ll never forget what Chef Christophe Megel said during my first day of school, you must have that burning desire within you. Be hungry for what you want in life! So with this hunger, I want to succeed in this line one day. *keeping my positivity*

Moving onto my health in general…for those who have stumbled upon my blog for the first time, one thing you need to know is that 3 years ago, I was diagnosed with an auto immune condition called Anti-NMDAR Encephalitis. All sorts of things unimaginable, unpredictable happened to me, a 360 degree change in me, thus affecting my loved ones. You can refer to my previous or first few posts that I wrote. But all’s alright now. Despite still being under a low dosage of medication, I’m back to my healthy self, happier than ever!

Okay, I think this shall be all. Next post would be in June I hope! Will update you readers about my new job! (:

Thanks for your time.

Love,

D

It’s World Encephalitis Day 2015!

22 Feb

Hello dear readers!

My apologies for not keeping this page updated as often as I would like to.

Today is a special day and I’m dedicating this post to ALL recovering/recovered patients and their families and whoever has/have been involved with someone diagnosed with NMDA Encephalitis.

Therefore the purpose of today’s post is to do all I can to spread AWARENESS of NMDA. Full name: ANTI-NMDA Receptor Encephalitis.

If this is your first time coming across this medical term, let me enlighten you.

NMDA is a type of autoimmune encephalitis. This occurs when our body’s own immune system attacks the brain.

Do keep in mind that seizures are one of the initial symptoms, it does not equal to the person being epileptic!

NMDA Receptor Antibody Encephalitis is a recently identified autoimmune disease that causes psychiatric features, confusion, memory loss and seizures followed by a movement disorder, loss of consciousness and changes in blood pressure, heart rate and temperature. The disease can respond well to various therapies that dampen down the immune system and the removal of an underlying tumour if one is found, but improvement is often slow.

If you are keen to know a deeper insight of NMDA, this link should do good. It is where I got my facts from: CLICK HERE

For those of you new to my blog, I first showed symptoms (seizure in school) in Nov 2011 and was only given a proper diagnosis in Jan 2012. I was hospitalised for a month and with the help of my doctors, I was discharged on 8 Feb 2012. Being hospitalised for a month may have seemed long for me but as I compare mine to other patients’ experiences, I have to be thankful. Some have been in bed for months, some are much younger than me and for some faced the worst, death.

Since then, I was under a high dosage of Keppra. It was to manage my seizures. In Feb 2013, I was in my last 2 months of university studies and I unexpectedly had a relapse at home. I had multiple seizures more severe ones compared to the year before. So I was given IVIG treatment, a steroid for 5 days which was used to lower my immune system.

To cut everything short, after being discharged, the medication I was given was appalling. I never had so much drugs in my system before (and to factor in those terrible side effects!!). I however tried to keep a positive outlook of it (I know many will say it’s easier said than done). It definitely has helped me cope with life. Today, all steroids and other medicine except for one are OUT!! (:

Besides this intention of spreading awareness about WED222, my other highlight is to let people out there know that having NMDA leads to not only bad but good outcomes too.

Despite the horrific memories and whatever bad that came out with it, life is well and I’m contented, happy, happy where I am now. I know there’ll be others who disagree but what I feel that came out best was myself helping other families who have loved ones suffering with the same diagnosis as myself. Through facebook support groups and this dear blog, I’ve connected with some, some even here in Singapore! I want to help them because being alone battling this daily is obviously bad and I’ve always wanted to give back to the society. It gives me a good feel and I’m happy doing this. I want to help as many, I feel the need to.

Therefore, this leads me back to my main purpose of today’s post>> awareness awareness AWARENESS of NMDA!

I hope my post has given you followers/readers some knowledge of NMDA. Please help to spread further. You may never know who or which family you are helping.

Till here, stay tuned for more updates hopefully! For more detailed experiences of my story, CLICK HERE

Thanks so much for time.

Love, D

Have yourself a merry merry christmas

29 Dec

Hi there!

I finally have the chance to update this (dead for 3 months) blog. Apologies apologies apologies..
How have you been doing?? Over at my side, so SO much has happened over this span of 3 months. Where to begin!? Hmm okay, the last time I updated, I know I was complaining about work being stressful. Well, you could say which job isn’t stressful right? Everyone goes through stress, it’s just a matter of how we deal with it.

So I’m glad work has been slightly better, well I feel better so that’s a good sign. Need to keep up this positive attitude! Anyway, it’s an apprenticeship, ending next Feb. Time really flies! I can’t believe 2015 is approaching! I begin my final term 5 next Jan and end in Apr. Everything is happening so quickly. It feels as if I was just ushering in 2014 at my friend’s house last year.

As each year goes by, I feel that I am always against time. And always complain, no time for this and that. Sometimes I feel like I just need a getaway to a beautiful island, just me myself and I, enjoying the simple things in life, not forgetting the serenity etc. Maybe it’s just the pace we are living in. I’ve watched documentaries where people live really simply and I tend to question myself, will I be able to survive those conditions that they are living in daily?

Anyway, so back to the stress topic.. it was kinda stressful in school too due to individual and group projects. So glad term 4 is done. There were good and bad moments. Skip skip skip to Christmas!! Yessss, my favourite time of the year although I didn’t really feel the mood this time round. Having the company of my family and friends, all the catch ups and what not. It all made me feel a ton better! What made this year more special was attending the Lorong Boys perform at the Esplanade. Their music pieces were played so well and the band made it interactive with the crowd.. Great job, great job! (:

Ah yes, for those loyal readers of mine, here’s an update on my current condition.
I’m on a lower dosage of Keppra. Next doc appt would be in Mar and I have to make a decision as to stop my Aza completely or to carry on but with a tiny dosage due to the long term effects. I’m glad that I’m left with 2 types of medication although I think they contribute to my mood changes and many other things. I want to stop everything completely but on the other hand, I have this paranoid feeling deep within me, that what if a relapse occurs. So many ‘what ifs?’. But I told myself to worry less and take it day by day and see how things go. To be glad that I’m doing something that I like, with no regrets. I now know how to phrase “to live life to the fullest” came from.

Hokay! It’s almost bedtime.
Tomorrow is another baking adventure day! Gonna try out a new recipe. Hope all turns out good, no hiccups!
Thanks for your time dear readers! Hope you had a lovely Christmas and have a merry new year!!

That word= STRESS.

15 Sep

Hello dear followers/new comers!

Very sorry for the lack of updates here. YET, I still see that it is being read thus, feeling terribly guilty!!!

So as school begins later in the afternoon, I shall update a little.

Hmm well, for starters, someone from Singapore came across my blog and found it useful as one of her family members has Anti-NMDA as well. I’m glad that it has somewhat helped her. Compare the public’s awareness here in SG and in other countries such as UK, US..I just wished more awareness was done especially that this illness is on the rise. For now, I think social media yes, it’s a powerful tool but there is definitely more that can be done! IF ONLY i had more time on my side.

So yup, hopefully I can find more people with NMDA here in SG. I’ve met other survivors apart from SG too through the FB support grps I joined. I always remind myself to be thankful because there are others younger/older going through worse. My heart goes out to all current and recovering patients. Ya’ll are in my prayers.

Whilst on this topic of mental health, I read this article in the newspapers about a 17 year old girl who suffered from a brain tumour right smack in the middle of her brain, making it difficult for the surgeons to remove it. She underwent treatment and eventually had to stop her studies because she became immobile. She unfortunately passed on leaving her loving and supportive family in June. I believe it was stress that played a role in that horrid tumour. I was lucky to not have a tumour found and received treatment in time.

I will never forget the period where I had to learn to walk, talk, eat. I had physio and speech therapy sessions. How I felt so useless, how restricted I was and I had to be on the wheelchair whenever I was out of my ward. The list goes on. It’s been 2 and a half years already. Life goes on. I’m still on medication, zero steriods so YAY to that. Family and friends keep me going. And yes the Man watching over all of us. Where would we be without Him.

Before I end off, I think I’ll put up some links I feel are relevant for future readers who come across this page. Oh it’ll be on a separate post. Okay, time to check on my cookies (they’ve been cooling off for awhile now). Thanks for your time dear readers/followers!! I’ll try my best to keep those posts coming😀

Love, D

What is your battle?

22 Jul

Hello followers/readers!

Before I head to bed, I’ve decided to type a short entry regarding the latest status of my condition.

for those reading my blog for the first time, my first few entries were about my experience dealing with the rare (well not so rare as the number of cases are increasing) neurological condition. It’s called Anti-NMDA Receptor Auto Immune Encephalitis. Yup, it’s a long name and much research has yet to be done.

It’s been about two and a half years since I was first properly diagnosed with NMDA. Time really flies.

 

Two years may seem long but sometimes I ask myself have I really moved on with life? I know I post a lot on being positive etc and I do try. Tiny details such as the ambulance siren or just by reading the word mental/neuro/brain/ whatever words that is related, it just triggers my brain into remembering those days you know what I mean?

Those constant headaches I had since secondary school (I shouldn’t have taken them lightly), my bizarre behaviour, horrid hallucinations, 360 deg change in personality, things I never thought I’d do, my inability to walk, talk, eat basically the necessities in life etc…

I am glad all is OVER. Although life is back to normal for me, one thing that frustrates me is that my eyes tend to become dry easily (no idea why), causing me to blink more. It’s irritating because it makes me look tired even though I’m not? I’m trying to include more kiwi fruit into my daily intake..I heard it benefits our eyes so hopefully I’ll see some improvement.

Medication wise, I’m taking them at a lower dosage(hooray). Thanks to my neurologist who has been slowly reducing it.  Next appt with him is next month. I will try to update by then!

So what is your battle in life? For myself, getting through everyday without thinking about my hospitalisation period and post hospitalisation, when my body was getting used to all sorts of pills (steriods, eew). Medicine really gives negative side effects. It doesn’t cure, it just prevents. But anyhow, it has gotten me to this stage today and I’m very grateful for that. My prayers go out to all current and recovering patients including their loved ones who are journeying with them. WE CAN WIN THIS BATTLE.

Thanks for your time!

Love, D

 

Dedicated to my dad

19 Jul

Yes, the title above says it all. I know I should’ve done this long ago but anyhow, it’s never too late right?

Even though fathers day has long been over, I just feel the need to share with you readers/followers of how grateful I am towards my dad. He’s been there for me every step of the way, and I mean EVERY step. Even before I was born, he had me in mind. I must thank God for him. He is truly irreplaceable. I must remind myself of how blessed I am to have my daddyo with me till today.

I know how blessed I am when my friends tell me how lucky I am to have him as my dad.He sacrifices his time, he listens, he loves, he supports, he understands, he cares, he is patient. Most of all, what I’m really happy is that he bothered to learn about Facebook and even joined the NMDA group because I was a member too. He even reads and shares my blog to his friends so as to raise awareness of NMDA. *so dad, if you’re reading this, no matter how many ‘thank yous’ I say to you, does not equate to the amount of love I have for you. Love you x infinity!!!