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| The writer wih his nephew: Amore. Several years ago when flare-up, carrying a small child like this is a suffering action. |
"Dinosaurs
in its day were the most powerful beings on earth. Now they became extinct because did not want to change "─ Anonymous
Diagnosed
with an auto-immune disease that cannot be cured normally assumed to be frustrating
for many people. In
mid August 2002; after being confirmed by the results of blood tests, physical test and other medical specialist’s,
an orthopedic specialist sentenced me got Ankylosing
Spondylitis (AS).
AS is an autoimmune disease that attacks the spine. Also known as bamboo spine;
because on
advanced stage, of all the spine
become fused together.
If
the spine examined
by an X-ray or MRI
it looks like a bamboo stem segments. The body becomes
stiff. Depend on
the body position when spine-fusing process happen, the body would become stooped
or hunchback. The process of unification of the spine is very
painful because
of inflammation. Make patients more aware of life and death. It looks like you were forced
to marry somebody you hate. Many patients are depressed because a lot of things
and simple movements that previously could be done smoothly become very
difficult or even not possible anymore. Many
have to change careers and if their age still young they
have to change the ideals because physical condition had been changed.
If you want to know the bad things that happened
because of the AS, please join with AS
support group in Facebook. Read and listen to the patient's
complaints. But if you want to know good things happen because the AS,
please keep reading this article.
If you
see a 500 ml cup filled with 250 ml of water,
what do you see? Did you see a half-empty cup or half-full cup? Both are true. Depending on the way you look. But as humans we can
make a choice. If anything bad happens in ourselves, we can choose to accept
and surrender OR bad things motivate us to be more creative. That's what separates us
than other
creatures. By the grace of God, I am very grateful for making
the right decisions; i.e. to be in the neighborhood and positive friends and often pray for me, so that my paradigm to be positive as well.
I wrote this article to motivate reader friends who
diagnosed with AS and other auto-immune disease that claimed by the
doctor is incurable and also inspire the patient's family in order to have a
new paradigm, a different and positive point
of view.
I will
share the good things in a holistic manner that is
physical, mental, social and spiritual.
Let's start,
shall we?
Physical
1.
Eat and drinking pattern become healthier. Affected
by AS makes you become very selective. Why? One wrong meal
or one wrong drink would make AS flare-up. And it
will make my spine or sacroiliac joint feel very painful. So with the passage of time, we
as AS patients have internal radar to guide ourself
to choose foods and beverages are
good and do not make AS relapse. Depending on the chemical structure of the body of any person,
food and drinks were good for me is not necessarily the same as another and the
majority of AS patients different from a healthy individuals. Salmon, pomfret-fish, marlin, white meat (chicken not pork),
tofu, tempeh, fresh vegetables, fresh
vegie salads with olive oil dressings, green chili
sauce, brown rice, garlic, tamarind, mix fruit
salad, fresh fruits, and so on are good for me.
Natural fruit juice
withour sugar and drink plenty of mineral water is very useful. Too
much shrimp, squid, catfish, Soto Betawi
(Indonesian cuisine which combined cooked fatty-beef with densed coconut milk), beef steak
and other red meat (lamb, mutton), too many alcohol (source of sugar),
cane sugar, soft drinks and man-made drinks
with artificial sweetener (aspartame) will make the body aches in the morning. Natural green tea leaves and ground coffee beans and served without sugar in the amount of max 2 portions
were good for me. More than that, making difficult to sleep; so lack of sleep, impaired immune
system and even provoke AS to relapse. How about a cheap instant coffee sachet? That's not coffee, but
sugar was given essence of coffee. Or powdered corn roasted to chocolate,
mashed and given the essence of coffee and sugar or (worst) aspartame. Very dangerous to AS patient.
2.
More efficient in moving and working. AS patients are unique. Too much motion and fatigue will trigger pain. Too little exercise will be stiff. Therefore, when shopping at the
big-sized mall or big
plaza we planned first: where
outlet
we want to go, what
items to buy, how long, where the nearest parking area, and
so on. So we are not forget
and doing unnecessary movements. When doing my job, I'll think in advance how to finish the job with most efficiently
and effectively
way. I
was forced by my mind and body to do this because uneffectiveness and inefficiency
will make the inflammation
pain attack
(flare-up).
3.
More frequent exercise so stamina is better and physically become more active. Before
exposured to the AS, my body
was feel good
and for any reasons, thus rarely exercised. Once exposed to the AS I was forced
to exercise. Why? Lack of movement will make the body pain and stiffness. So as
it used to exercising, the better stamina. Increased energy. Mileage runs into
more distant. Body's ability to withstand pain / soreness range will increase. Better sex life. Orgasm
when high stamina and body fit and healthy it is good because it produces
endorphins, a natural pain-killer. And so the good things happen because of the
exercise will be obtained. Swimming
in pool, ride a stationary bike, pilates,
yoga, tai-chi, and AS gymnastics, very good. The latest popular exercises:
freeletics (especially
AS patient under 30 years old and without burpees,
without sit-ups or any other movement that compresses the spinal cord or knee)
if you want to and your
body in fit
condition; still possible. Note:
When flare-up, reduce intimate relationships
(coitus)
because muscle twitches when orgasm instead will cause pain.
4.
More sensitive to weather changed. It's one of the strange things that happen to AS patient. Before diagnosed with the AS, my body is not too sensitive. Once exposed to the AS,
changes in weather outdoors or indoors without air conditioning on will
feel / affect my body. Sometimes the weather outisde building is
very hot, but suddenly the temperature dropped, although the sun was shining
brightly, I know, rain
is coming soon. One again, it was cold weather also
will make AS more easily relapse. The
solution? More frequent exercise and drinking hot ginger water will make body becomes warmer.
Mental
5.
Life’s Priority becomes better. Recognizing AS in my
body can flare-up any time, I became more selective in this short life.
Unwilling indiscriminate in activity. Reschedule life's priorities. So that priorities in life became better, more balanced and
meaningful.
6.
Talents become clearer. Before
exposure to the AS, I would do things in the work that supports the achievement of
objectives. Once exposed to the AS, not all things can be done, so I just focus on the things that become
strengths / talents and my life
calling. To
teach, to
coach, to empower others, to
write and inspire others provide additional energy to
live a happy and
meaningful life with the family I loved. I
now dare to reject without hesitation (and still feel happy) to work or job although it seems gives
a lot of money but contrary to my life calling. Thank God.
7.
Conceptual skills become more developed. If enter a new
building I tried to see the layout of the room or
floor plan first. If it goes further
to other areas or between city I use viewed on Google Map first. Why? Getting lost
would make the AS
patient feels tired and can trigger
flare-up. So the habit of seeing the big picture in mind and
to imagine making conceptual abilities becomes more developed. Now I can
see the big picture with ease. I
can read people’s
body language more precisely. And can make decisions more
accurately. All because conceptual
and mind exercise.
8.
Become more creative. People who are physically fit will be more likely to
follow and realize the physical motions. As AS patients, please do not be lose to people who are still healthy. Your body limited movement if addressed properly, will make you think more frequently and more than
a healthy person. Remember scientist Stephen Hawking or other great people in
history with body weaknesses or limitations. You
will be able to see with
different eyes and see more various alternatives. So you'll be more creative. New fresh and
creative ideas more precisely arise when people use their rare-to-used brain to really think-hard.
Social
9.
More selective in choosing friends. All friends are directly and indirectly lead to things
that violate the principles, priorities and my life calling; intensely I left them one by
one. Why? Quite simply, spend time with them makes me upset dan trigger flare-up. The book of life states: "Bad
company corrupts good character". In exchange, the Lord even sends me
far more qualified friends who have almost the same vision and calling. I reduced communicate with friends who like to gossip or meet family member who always talk negatively. More communicate and get together with friends with a
positive and look at life from the wider and deeper view. Therefore,
my life becomes more beautiful, meaningful and produce endorphins hormone, a natural painkiller, so reduce
the dose of painkiller that I consumed.
Spiritual
10. So much easier to grateful. In this changing
world, many
sufferings will go on.
Not to be affected by auto-immune disease
only. There are many people who suffer much heavier and no
cure. Or there is a
cure but someone
cannot afford or they
have the money
but the cure is not available in
area where they lived. There are people who are healthy and want to get married in a week,
but the next day
they suddenly died
because his/her plane crash
or exploded
by terrorist and their bodies were never found. Some people are rich, healthy and loved by his wife and children but chose to commit suicide when his business went
bankrupt or lose a bet on the stock market. There were massive dead in suicide bombing, the death an accident due to the mistakes of
others, natural disasters, or eaten by crocodile at Disney Land. There are
people who are blind or have no
hands and feet but with passion still motivate others
are much more healthy and perfect. Reading and watch
all of this makes
me grateful. If there is a temptation to feel sorry for
yourself (self-pity), the temptation was immediately destroyed by reading and
analyzing the environment that occurs in the world today.
11.
More often prayed. Indeed,
pain, despair and feel incapable-self
going to force you to pray and ask for help from the
power of the Most High. If you are already experiencing this you
will understand. If you have not experienced, later in time you will
understand. Prayer is scientifically proven to make you feel calmer. The heart
rate is normal and regular. Blood pressure becomes better. Stress is
reduced. Thus reduce pain and speed recovery from illness or injury after
surgery. Prayerful out of the deepest heart will make a person's spirituality
will rise to the next level.
12.
Spirituality becomes more mature. Suffering will strengthen you. Seriously. As someone says: what did not kill you will make you stronger. As an AS patient you will suffer endlessly / chronically.
Because already suffering for
many years, naturally
you were trained more than other people and spiritually
you can motivate others who are still healthy and possibly spiritually
immature.
Overall, because of this AS, my life becomes more organized and better. Do not be a crybaby. Be responsible. Get up. Take
a shower. Make yourself clean, neat, and smell good.
Dress in style. Rise. Speak. May
the shine of the Lord will rise upon you!
I pray for all who are reading this article can be given
the correct paradigm so can experienced
a life full of joy, passion and
peace.
LV22072016
