What's A Flare?

In the midst of a flare, and it is not time yet though. I am associating that it due to the Lunar New Year period, whereby I have been lack of proper rest, sleep and stressing over some home matters.

Just a little insight of what this auto-immune condition called Behcet's Disease does to me and how it affects me... 

So what's a flare for me? 

- multiple ulcers in the oral cavity (usually more than 3 that can be on my tongue, inner lips, tonsils or even gums). Making eating, speech, drinking, swallowing and oral movements more difficult than usual. 

- gum inflammation resulting in sensitive pain when consuming cold liquids or food.

- hypersalivation due to the body's own mechanism to 'lubricate' the ulcers, attempting to lessen the pain due to friction of oral movements. 

- various skin pustules, acne and abscess. This occurs at any part of the body, including scalp. 

- aches at any random joint, usually fingers, elbow, rib cage and even knee. 

So you may ask how do I cope? 

Basically:

A) eating as normally as I can. If I can't eat, I will drink soy milk to meet my nutrients needs. 

B) basically wearing long pants to cover up the skin abscess, tops with sleeve as shaving the armpit area would be painful. (yes, I will have abscess there too) 

C) living my life as normal as possible. Behcet's Disease is an Invisible Disease, which means, you won't really know unless I tell you or rather if you observant enough about me, then you notice the subtle change in my speech, eating habits or dressing. 

D) Sleep with a towel on my pillow to absorb the saliva and prevent soiling the pillow case with abscess that bursts during sleep. 

E) Accept my hair loss with each comb, shower and frequent vacuum of the floors. 

What medications are you on? 

Regular ones:

1) colchicine twice a day

2) multivitamin once a day

3) probiotics once a day

If flare starts:

4) tramadol for the pain before bedtime

5) Xanax for mental calmness before bedtime 

If flare worsens:

5) Dexamethasone in the morning 

6) Omeprazole in the morning

How do you feel now that you are nearly one year into this diagnosis? 

Honestly, I have accepted this is part of me, be it karma or whatever people would like to think it as, it doesn't matter as I have to live with it, like it or not. I have a supportive husband to understand my condition and its downtime it causes, so he copes with my flare with same mentality as me. More of my close friends and close cousins have been informed of this issue that I am living with. I also have my Thai Master and friends in the same religion who encourages me to always stay positive, think positively and live positively. Hence, this disease doesn't gets me too depressed as it did initially when I was newly-diagnosed. 

What's the outlook now? 

Basically live one day at a time and see how this disease progresses or improves. For the time being, my autoimmune doctor can't do much as my liver blood tests isn't optimal to start any stronger medications to suppress the flares occurences. 

Of course, I have read about the complications of this disease progression that can lead to stroke, blindness, deep-vein thrombosis and intestinal issues. I leave those in the hands of the One up there. No use worrying about it! It would come if it is meant to come. Just pray that when those more serious complications occur, my parents would be in Heaven by then and my darling Charcoal would have passed on, so as not to have extra burden on my husband. I don't fear the death that results from this disease, more of fear for the suffering of pain as well as burdening my husband to take care of me. I have adequate medical insurance to cover financial aspects if I have any disabilities due to the disease progression, so finances shouldn't be a much worrying issue. 

Ending my post to readers, whether you do me personally or just randomly chanced upon my blog, wishing you good health and happiness. Cherish your health, 'cause you may not never know when it can suddenly turn against you for no rhythm or reason. 

First Post of 2021-Lunar New Year Day 3

I would like to start the post wishing all that celebrates Lunar New Year aka Sping Festival aka Chinese New Year, a Prosperous year of the Ox ahead and Blessed 2021 With Much More Joys than 2020.

The past 6 weeks of 2021, has just gone by like that. But lots of emotions that I have been reflecting on...

1) My own divorce that had indirectly inspired my cousin to finally leave her husband, whom she had been married for about 17 years. She had enough of his infidelity and she is currently expecting a baby in April this year with her live-in bf. She is more worried of what our relatives in Sg may judge or say about her situation. So I told her that as long as she is sure about this guy, why bother what the gossipy relatives may say, its her life not theirs. Just like me, when I first decided to date my current husband, my parents, especially my mum, was not supportive of the relationship, constantly making unfair judgement about him based on his looks. However, now she realizes that I am happier person being with him and he is equally filial towards her. They now get very much along and I frequently enjoy our dinner as a family, chitting and socialising. (Something that I didn't get when I was with my ex-husband.) 

2) I had to deal with training 2 new staffs after receiving news of resignation of 2 staff. Dealing with an insecure newbie was really tedious, however, she is slowly gaining her confidence to deal with clinical administrative work. Then another staff has the experience in a private GP clinic, so she initially thought she knew it all but realized that private specialist sector can be more stressful, demanding and challenging, hence, her attitude is more tamed now.

3) My autoimmune has been more subdued. But of course, I still have those ulcer and abscess recurring monthly along with my menstrual cycle. Just that I am more about to cope with the flares with medications and self-psychology, instead of wallowing in self-pity. I kinda feel that this is gonna be a part of me until I die. Something that I have got to live with. So there isn't anything much I can do about hating or dreading it, as those negative feelings that makes which flare feel worse.

4) Did my prayers to 太岁 yesterday and to Rahu. Hopefully my 2021 would be more smooth-sailing than 2020. No more bad news to my health, no more work crappy politics, no more worries about crazy neighbours complaining of ceiling leakage once I settle my renovations probably during mid-end March.

That's so far my updates for past 6 weeks of 2021. Or rather my gripes and rant of my life so far in 2021. So till I blog again... Cya! 

Last Post of 2020

Let's end 2020 with a Top 10 List!

Things/Matters I Am Grateful For:

1) My immediate family, In-Laws and I stayed safe during the Covid outbreak. 

2) People I know and around me (those I truly care for) had their jobs secured.

3) Charcoal remained in good health and didn't need her annual vet visit. 

4) Financially being still stable during the Covid-19 period, although my husband had to make do with lower income by switching to doing food deliveries instead.

5) Being able to explore more recipes to try out whilst being forced to cook at home more often due to the 'circuit breaker' period

6) Having constant winning streak in 4D luck

7) Still having a close bunch of friends around me to cheer me despite knowing my autoimmune condition. 

8) Managed to spruce up my home with some new furnitures and fixtures as planned (when we bought the house, hubs and I planned to change furnitures around the house once every 5yrs).

9) Finally untying a knot from the past and not harping on an apology which I have been enlightened that doesn't matter a difference now since I am happily married.

10) One step nearer to getting my promotion if I manage to handle all the stress and workload thrown upon me.

Songs That I Still Enjoy Listening:

1) Astromania 

2) 体面 

3) Goodbye My Lover 

4) Memories (Maroon 5)

5) 男人女人

6) Fix You

7) 爱自己更深

8) 2002

9) Bad Guy

10) Someone You Love

Things I Hope For in 2021:

1) Getting the promotion I deserve after so long

2) Better Health

3) Better Wealth

4) More peace and serenity in my life 

5) Family members and close friends to be safe and sound. Happy and blessed. 

6) The Pandemic to blow over and life can fully resumed back to where you used to be- No mask, self-serviced buffets, no need to safe entry check-ins, travelling whenever you want, no hassle of needing to book appointments or time slots of entry into tourist attractions.

7) House toilet renovation works to be completed without much hassle

8) More money (tell me who doesn't love money?) 

9) Charcoal to continue staying healthy 

10) Marital bliss to be continued or to be even better! 

领悟

Recently, I had a heart to heart talk with my 师傅. He suddenly ask me about the knot that I had been carrying for the past 8 years. He asked why have I not been able to 把你放下 and my replied was due to the fact that I have few unanswered questions as well as that I feel you owe me an apology for wasting my time and effort to make our marriage work.

He made me realized a few things:

1) my current life wouldn't change a bit now even if I had your answers to my question? So what if the answer was that indeed there was a 3rd party in our marriage? Does it matter to me now that our cracks started from the day that I confessed to you about my mistake of almost choosing someone else instead of you?

2) Even if you did apologize for the divorce that was the ending of our marriage, does it matter to the ending? We still would have head for the divorce anyway, we still would gone our own ways, we still would moved on with our lives without one another existing. Our 缘分 would have ended.

3) I mentioned that you wasted 12 years of my life and my efforts to make the relationship and marriage work. You also did spent the same amount of time with me. So indirectly, you also wasted 12 years of your life with me. That is 扯平.

4) I am being unfair and selfish towards to my current husband, who all 旁观者 can see that loves me a lot, with my constant 放不下 of you. I am depriving him back of the love he deserves due to my own holding back of giving him my all. I should love me as much as I did love you. Since I married him, I should let all my worries of history repeating itself go, I allow myself to love him as much as I did with you. The words used on me is '生在福中，不知福'. Those words were never said to me when I was married to you. Rather the words and questions asked to me while I was with you were why did I chose to hold on to you when the world could see that I was miserable being your wife and that I wasn't happily married to you. 

5) My current life is better and happier without you to hold me down, without restrictions that you had for me, without the expectations that you wanted of me as a wife repenting for my erroneous decision of briefly two-timing you when you were my bf. My current life is also more at peace and ease without the fear of you leaving, as you already did. I am more confident with myself and no longer the same person you know me to be. Hence, I shouldn't blame you anymore for our divorce.

With the above all said, you will always remain part of my memories but I no longer hold it against you for our divorce. I no longer need your apology. I am reminding myself to give my husband back his fairness of my full love without anything holding me back. 

Goodbye Jeff (unless you decided to change your English name again). Hope our fate will end here and this life. I don't wish to 亏欠 nor need you to 还我 anything if we have the next life. 

Behcet's 4th Month In...

Been slightly more than 4 months has past since I am dealing with Behcet's Disease and I am coping with whatever it has brought along: oral ulcers, skin lesions (acne & abscess), at times, nausea, and not to forget the side effects of medications that includes, diarrhoea and hair loss. 

So how am I doing? Honestly? I would say there are the good and bad periods of this disease to me. Eg:

1) there have been days whereby when my flare is real bad, when my ulcers hurts real bad and plagued with painful abscesses. Those are the days when I am unable to eat any solids without tearing up, when I feel unpretty due to the abscesses on body + facial acne, when psychologically I wonder why all these are happening to me. These are the days that I would end up crying to my husband and feel kind of defeated. These are the days whereby I would not have any appetite to eat and only drink liquids such as soy milk, Ribena and of course water to 'survive'. Let's not forget the fatigue that comes along that is akin to having flu, that no matter how much I want to rest yet can't seem to sleep properly. 

2) Then there are days, like now, I am coping fine. Not that I am really ulcer free or skin lesion free, just that they don't bother me that badly. In fact, since the day of diagnosis, I have forgotten how it feels to not have a single ulcer in my mouth or on my tongue. I don't remember what it feels like to have a normal sensation when eating or drinking. I have also forgotten what or how chew my food properly before swallowing, as I would chew my food a bit then swallow it as soon as possible to avoid much pain to discomfort from food being in my mouth too long. Stronger tasting food, like spicy or salty food tends to invoke a higher pain level when eating but that doesn't stop me from eating them though. Just that I avoid them when the ulcers get too many or big.

My daily tablets including my Colchicine three times a day, probiotic once a day and multi-vit Gummies once a day. If my flare is bad, then painkillers are taken to help me sleep and oral gargle to numb my mouth before I brush teeth.

All and in all, I am still very much trying to catch the flare cycles and learning how to deal with this disease. It is going to be a lifelong thing that I have cope with. I have to keep an open-mind that it may bring along other issues in future. Just like any other Autoimmune disease, there isn't any cure. Medications are just for symptomatic relief and helps to control the number of times of flare.

But one important lesson this disease has taught me would be to put myself first rather to force myself to do stuff that I feel unwilling. I have learnt to rest when tired, to reject things that makes me uncomfortable and to listen to my body cues. I have learnt to prioritise myself first, no more do I fight fatigue to head out to meet people or force myself to go all out at work when I feel unwell. So those who know that I am down with this autoimmune problem have to understand and those who don't, I also am not much bothered to explain myself to them. 

Finally, I am grateful that my husband has been quite on the ball with me throughout this journey so far. Although he doesn't fully understand what I go through, but he is empathetic enough to respect my decisions to not eat out, when I want to sleep early, not in the mood to cook or eat anything solid and when I have my breakdowns due to the discomforts. The above mentioned are good enough for me coming from him...

Coming Clean

Been diagnosed with Behçets Disease after all the recurrent abscesses, oral ulcers and skin lesions that I had been experiencing since 2019. Not sure how to say this but, yes, I am officially an autoimmune patient. 

For the past 2-3 months since the diagnosis, I have suffered hair loss due to medications, in constant discomfort and pain due to the multiple oral ulcers, having skin lesions like acne with scarring, and lastly feeling easily tired-out. 

So far only my husband and 3 of my close friends know of this diagnosis. Even I, myself, is still in a bad place or mental state to announce it as a form of my identity. Having an autoimmune condition is akin to cancer, the only difference is with cancer you know that it would be fatal when you are diagnosed at the last stage and there are ways a doctor can stage of it to inform you how serious it is. With an autoimmune condition, you are exposed to repeated flares of it, making your life a living drag and you are left dangling wondering how to deal with each flares comfortably, waiting for time (days/weeks) to past for the flare to subside. You would be able to gauge the cycle of when to expect the flare, yet, nothing can cushion you fully from the discomfort, inconvenience and pain of the flare. You would never be fully well and without reminder symptoms of the autoimmune condition.

As a female, losing hair and having scars fm the skin lesions is affecting my self-image and body-image. 

Ending my post on a bitter-sweet note, hoping that moving forward, I would be an inspiration for those diagnosed with Behcet's Disease. You may not know me but just know that you are not alone and there are also other females out there, suffering the same rare condition as you do. 

其实 - I Loved You More Than You Did Love Me

不需要借口

爱淡了就放手

我不想听

你也没说平静的交错

随便找个理由

决定了就别回头

不爱你的人

说什么都没用

分开时难过不能说

谁没谁不能好好过

那天我们走了很久没有争吵过

分开时难过不要说

如果被你一笑而过

还不如让你选择想要的生活

分开后我会笑着说

当朋友问你关于我

我都会轻描淡写仿佛没爱过

其实我根本没人说

其实我没你不能活

其实我给你的爱比你想的多