I have snatched some entries from my 1st blogs. Entries which were written in random and are talking about my lupus.
This one was posted in my blog, January 3. When I was feeling down because something had slipped my hand. Something that I have long for for a long time.
Me
I know I am unique
Despite and inspite of having lupus
I continue to struggle
Through the daily battles of life
Sometimes I win
Sometimes I lost
That I’m on the verge of giving up
There are times when I want to do something
But my sickness kept me from doing it
I wanna run, I wanna jump
I want to climb the mountain
And reach the top
But somehow along the way
I crumble And stumble and fall
Before I would cry and cry
And ask god why
But now I’m contend to reach what I can
I have accepted the reality
That I’m no longer the healthy girl I used to be
But rather a woman
Who has limitation
And has learn how to deal
The scorns of LuPUs
I may not reach the top
And may grope along the way
But still I’m glad and proud
That I was able to MaKe It
Even half the way!!!
This one was written when I was depressed, way back January 26.
Dear God
Dear god,
For all the test you have given me
For all the pains that I have to endure
For all the uncertainty that I have to unveil
For the future that is waiting to unfold..Thank You.
Thank You..
Because for all these test
I find myself growing stonger in faith
Because for all the pains
I have Mahal’s hand to hold
Because for all the uncertainty
I see the unwavering support of Mahal and my family
Because in the future
I know No matter what happen to me
It was ur YOUR WILL that I have followed
But God please help me…
To find courage and the will to fight
That I may always see the positive side
And that I may be able to recognize
the love that the people around me showered
May I also be an inspiration to those
Who have been experiencing their darkest hour
May I be able to show them
That YOU are god inspite of the bad things that is happening
There will always be a rainbow after the rain
Also, may I always be able to thank
Mahal..for always being there and for being my pillar of strenght
My family…my kuya, sister in law, ate, my brother in law and the three kids
Who have been supportive of me and have understand my conditions
My friends who have been bringing laugther to my life
Despite and inspite
Of having lupus, pulmonary embolism and cyst
I still feel lucky and blessed
Because I still can live a blessed normal life
Thank You, Lord. Be with me always.
Posted January 26
Some thoughts…
1. When you are sick, I mean really really sick and it was your first time to be sick..you are into denial period. You kept on insisting that you are okay and that you can still do things which you are doing before. This was my feelings way back 2002 when I was first diagnosed with LUPUS. Even if i have high fever i still managed to go to the office. Even with joint pains i still managed to walk and climb the stairs. Even if I’m tired and exhausted I managed to say “Kaya pa!”. I hated meds then. The sight of capsule and that red Iberet makes me want to throw up. I am not sure if its will power or stubborness. Looking back its a mixture of both. But thank nothing untowards happen during those times of hard headedness.
2. When you are sick, it really bothers you when people stares at your condition. For me, its irritating especially when my butterlfy rash wishes to appear or my joints are not cooperative. When I walk people stares at me like I am an alien from outer space. Maybe, its human nature — when something is different human tends to STARE! not knowing that their stare will create havoc to their subject’s(the one their staring) confidence. What would i suggest people do? Its ok to stare but don’t be too obvious. Sometimes, I want to approach the person staring at me and asked him or her what’s wrong. Obviously, abnormalities occurs to people who are sick. And those staring won’t help. So, please…don’t be obvious.
3. Doctors matter. For the first year of being sick with LUPUS i have been seeing a nephrologist. That is, her field of expertise is the kidney. If your commuting, it will be a long walk just to reach her clinic. Everytime I have check up I have to skip two days of work just to be able to go for a check up. First day will be the test, CBC and urinalysis. and second day would be my check up with her. That means I have to go to her clinic as early as eight o clock just to make sure I am on the top of the list and have to deal with her unfriendly secretary/receptionist. Then she will come at around 10 o clock, so she will start seeing patients that time. If I’m lucky I would see her before lunch but if I’m not then that means I have to wait. And she doesn’t have a Saturday schedule. It was really exhausting. Not to mention, expensive because I have to ride a cab to go to her clinic. And when I see her all she have done is to lessen or add up my dosage of pred. She doesn’t even told me that I have to drink milk for starters. All this pave the way for my search for a new doctor. Because all she have done is to check my CBC and urinalysis. And she doesn’t recommend any other medications. It seems to me she was clueless about my sickness. Well, I was the first case of LUPUS in that hospital and the first to fall on her lap(figuratively speaking). I think I have more knowledge about my sickness than her because I have been surfing the net about it every since i was afflicted by this disease. Showing no progress at all I started to look for a new doctor. It was not easy. And I stumbled with my rheuma accidentally. Through surfing I learn that RHEUMATOLOGIST are the most knowlegdeable about LUPUS. Its their field of expertise. I met him at a Charity clinic but was not able to have a follow up check up. When I got sick and needed hospitalization, I went to one of the oldest hospital but recognized for its excellent service and good doctors. And God really wants me to have him as my doctor because he is the RHEUMA which is accredited by my HMO. AT first, because of my previous experience with that nephro I doubt his capabilities. But through constant check up and nagging I started to believe him. For three confinement and numerous check up, I can say I trust him with my life. Not to mention the he helps me out deal with my HMO. And that the result of the lab test in the hospital he is associated with is the same day and he have clinics during Saturday! SEE! It’s convenient! And he has a good and friendly secretary. Finding a good doctor is not an easy journey but if you stumbled upon one, well, follow him or else he will know you are not doing what he orders you to and he will scold you…ha..ha..ha. Just follow him because he really knows his job. thanks, dr. i! from the bottom of my heart. although i know you have tag me as HARD HEADED! ha..ha..ha!
4. Friends who truly understand you matters. Or those who have tried to understand although they have difficulty comprehending the situation. Some of those I considered as friends doesn’t realized that my sickness is not a spur of the moment. It was, before I was diagnosed but now, my sickness is here to say as long as I am alive. They are as affected as I was but they thought that I am just making my sickness as an excuse. I avoided going out with them because I don’t want to burden them of my sickness. And this have been a big deal to them. They thought I dislike them but the truth is I am having problems when I am going out with friends who does not know my condition or has problems dealing with my condition. I make it a point that Mahal is always on my side when I go out. Because he knows that I might be uncomfortable with the chair i am sitting or I will have difficulty walking along a rocky path way. Some just don’t understand my predicament. But there are few who did and I thank god for them.
5. Family matters. Even if they won’t be always the one who would take care of you when you are in the hospital. Even if they would scold you and tell you its your fault why you are sick. Eat this and eat that. Don’t do this and don’t do that. They are still family who understand that life was never fair. They have accepted the fact that I am sick and now have limitations. And have done some adjustments to accomodate those limitations. I love it when Buma would act as if she will carry me when I cannot get up and walk, I love it when Mulong will asked me if I’m okay. I love it when my sister in law would hang my wash clothes because she knows im too tired to do it. I love it when my sister would nag me for a check up and I love it when kuya would repeatedly asked if i am okay because we are miles apart. I love every single part of my family.
5. One true love. who will never leave you, who would sat beside your hospital bed and hold your hand. Who would cry when he thinks the pain was too much for me to bear. Who would laugh at a serious situation and find the positive side of it all. Who would seek other means of medication just to see me cured. One who would pray for me before he prays for himself. And one who will LOVE YOU no matter what.
6. ACCEPTANCE. All the efforts will be put to waste if you will not learn to accept the fact that you are sick. Yes, this means a change in your lifestyle. You cannot grow your hair or you should expect falling hair from now on. You cannot expose yourself to direct sun. You have to wear long sleeves, use sun glasses and of course, SUN BLOCK! You cannot used ordinary soap and lotion. You cannot used any perfume and make up and be cautious in selecting your shoes and dress. Flat shoes are in and if you are having a LUPUS DAY report to work wearing rubber shoes. yes! I always wear my black rubber shoes to work. They are fine. Dress should be easy to put on and undress. Especially during bad lupus days. Watch what you eat. Even if its delicious. I even learned that food that taste bad sometimes are good for the health. Don’t stress yourself to much. Don’t walk too much. Because if you do expect a consequence of not having to walk straight the next day. don’t stand too long. don’t sit too long. avoid the stairs. if possible use the elevator and the escalator. if you use the stairs make sure that therere are not many people who will be irritated because of your slow movement. Expect half of your money to be spent on medicines and soap and lotion and sunblock that your derma recommend. Your are not the first option for promotion but you are the first option for to do jobs! duh! you will be spending all your sick leave and vacation leave for the year plus leave without pay may be incurred. You have to try to eat or drink herbal even if it taste bad because this may help. and you would even try to consult quack doctors for hopeless cases. ha..ha.ha.
7. No matter what happens turn to GOD. He may not answer you by healing you but he works in mysterious yet helpful ways. God, God, God, will always be the answer.
Nga pala. Feel free to comment on my tag board so that i know you pass a long. And if you have blogs also, please tell me so that I could link you up!
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