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.
