BLESSING IN DISGUISE
It’s all started in the year 2001. I was thirteen, and as a first grader in the junior high, I was thrilled to do lots of new things: join the intern student organization, take guitar class, join theater club, doing scouts activities, etc. I also met new friends, I started going out with them…I have a great school, lots of friends, good scores… I felt happy and my life feels perfect at that time. Then I had the fever.
My name’s Olivia Elena Hakim. October 2001, I had a very bad fever, I felt so weak. I was hospitalized at St.Carolus, and the doctor diagnosed me with dengue fever. I recovered from my sickness only to found my self hospitalized again several days later. I recovered, sick again, recovered again, it drives me crazy. Between October 2001 to February 2002, I was hospitalized for four times, made me, my family, and (especially) the doctor confused. Even the staffs at hospital started to recognize me. Every time I was dragged to the hospital, they would say something like ‘back so soon?’ or ‘check-in again?’
My sickness was getting worse, I started to have dehydration because I would vomit everything that went into my stomach (even a little biscuits), weird reddish rash appeared in my legs, hands, and face (I guess I looked like strawberry at that time), and my joints ached badly.
I took several tests and finally, the doctor came up with the right verdict. But my family thought that I would be depressed or shocked, so they hid the truth. But if all your family members kept whispering around and always been in a serious discussion with doctors, sooner or later you’ll know that there’s something serious about your health. Moreover, a dengue fever patient shouldn’t need to take corticosteroid therapy, right?
Lup..lup…what??!!!
At last, I figured it out. I have Systemic Lupus Erythematosus, an autoimmune disease. Surprisingly enough, I was pretty cool about it, no big shock, no shrieking, no tears-jerking scene….nothing. I was just like ‘oh, okay…so this is what you people have been talking recently…’
Maybe it’s simply because my family told me the truth at time where I started to recover, I was no longer hospitalized, and the medicine worked great, I haven’t fully understand how scary my disease could be and I haven’t felt the side effects of corticosteroid. It’s amazing how good the power of smart timing could be…
Rules and Side Effect
Now that I know what’s going on in my body, the doctor told me several rules that I must obey. I’ve given a high dose of prednisone. It’s not the type of drugs that you can take this day and stop taking it tomorrow. I can’t just stop taking the drugs, but the doctor will reduce the dosage slowly if my condition is getting better. But I may have to take this drug for my whole life. Then, I would have to avoid three things in my life: direct sunlight, tiredness, and stress. Those are things that can influence my SLE to ‘wake-ups’ and attacks my body again. Sounds pretty easy? Mmmm….the sunshine part is quite easy, but avoiding stress? Yeah right…
Then, there goes the side effects of corticosteroid…it makes you suffer more psychologically than physically. Corticosteroid makes you fat and it causes moon face syndrome (I shouldn’t have to explain it, right?). It also makes your hair thinning, causes dry skin and weak bone.
One day I saw my reflection in the mirror and wonder in despair why should I turn into a fat stranger (or fat vampire, to be precise…)
Facing a New life (under the shadow)
But, so far, there were still no tears, no shock, nothing. Then on my first days back at school…after three months of absent! (Phew, I’m really glad my school gave me second chance) I started to feel the different. I was changing, suddenly my uniform is no longer fit in my body, no more sports, no more clubs, no more after school activities, even walking to my class in the third floor is another struggle because every stairs mean another aching joint to me and I really hate those ‘oh-so-sad’ stare people gave me!! I lost my self-esteem, my pride…it’s so horrible. I started to study crazily because I think maybe good points in theoretical subjects will be the last thing I could put my pride on (but later on, I realize that putting your pride on a piece of report card is pathetic..)
One day, when I sit on my class and watching all my friends was doing sports activities downstairs, suddenly I found my self in tears. That was the first time I cried after I was diagnosed with SLE.
Adapting to a new life was really hard, there were some emotional moments, stressful feelings, denials, it’s really hard on the first months… but I believe it’s God Himself that being there all the time, because surely I wouldn’t be able to pass through all these obstacles alone.
After then, I was quite relaxed about my condition. I wasn’t trying to change anything, I focused my self on new hobbies, I even started to feel glad for not being in sport class and scouts activities, because it gave me spare times to study (remember, I was three months absent!) or just simply relaxed reading comics…I also able to make jokes on my condition…and also getting used to the ‘oh-so-sad’ stares as a sign that people cares about me.
Present & Future
Now I’m 19 years old, I have already graduated from my high school, and this year I am studying communication at London School of Public Relations. I’m planning to work in prints media in the future.
More good news: I’ve just had several tests and the doctor declared that my SLE was non active right now (he also keeps on reminding me not to ‘wake’ it up!). My corticosteroid drugs have been reduced to a very low dosage, no more excruciating side effect! I started to get slimmer and the moon face syndrome is no longer disturbing me…but miraculously it’s no longer a big deal for me. Fat or not, what really matter is my health. (Isn’t it amazing? When I was getting fat for the first time, I’ll do anything to get to my normal weight…)
I can say that this disease is a blessing in disguise, because it has turned me into a better person and it bounds my family in a new way, making our relationship closer than before.
Another ‘blessing’ I received from God is real friends. After my sickness, I realized who is my real friends that really care and always support me, and who is the fake friends that leave me afterwards.
In the past, I used to makes jokes on ‘fat’ people, and I wouldn’t want to make friends with people that I judged as ‘nerdy’ or ‘not cool’…but, voila! In just several weeks I became ‘fat and nerdy.‘ This experience taught me that there were no such things like ‘cool or nerdy,’ ‘fat or slim,’ etc. I stopped judging people from their appearance and I started to respect all people just the way they are.
Now, I’m feeling healthy, I’ve just started my new life as college student, I study new things, meet new friends, also started some charity works at local church… I feel almost like normal person… and I really thanked God for the chance He has given me to change.
“To every thing there is a season, and a time to every purpose under the heaven: A time to weep, and a time to laugh; a time to mourn, and a time to dance. He hath made every thing beautiful in his time”
What is Systemic Lupus Erythematosus?
Lupus (latin=wolf) Erythematosus (latin=reddish)
SLE is an autoimmune disease. It means that the body produced too much antibody. We know that antibody works to protect our body from disease/illness. But unfortunately for SLE patients, the antibody lost its ability to differ virus/bacteria to body tissues/organs. Then, the antibody started to attack the patient’s own body.
This disease is named in such a way because people in the past thought that wolf was the culprit of this disease. Scientist today thinks that hormonal factor may influence SLE because 90% of SLE patients are women. But until today, the real cause of SLE remains a mystery.
As the culprit remains unknown, it’s vice versa with the medication.
Corticosteroid therapy taken by patients only cures the symptom, but don’t cure SLE. So, once someone is diagnosed by SLE, she/he has to adjust him/herself and prepare to live with the disease.
The symptoms of SLE is highly vary that this disease is called as the one-thousand-faced disease or the great imitator. It gives a very hard time for doctors to make the right diagnostic that most of Lupus patients died because of wrong diagnostic, or it’s way too late when the doctor finally figured out the disease. Some of the symptoms are:
o Arthralgia (painful joints)
o Fever
o Arthritis
o Fatigue
o Butterfly rash
o Anemia
o Kidney disease
o Pleurisy (chest hurts when taking deep breath)
o Rash in body
o Photosensitivity
o Losing hair
o Etc
For more information about SLE, contact: www.lupusindonesia.org
