Category — Lupus and I

Everytime I go for a check up on my rheuma’s clinic, I always end up chatting with his patient for the following reason : one, to entertain ourself as we wait for our turn, two, i’m curious if they also have lupus like me or what is the reason they are going for a check up and three what they think of my rheuma.

Over conversation, they always end up telling me that I do not look sick. Which I always answer with “I have a good rheuma but I have been through worst”.

It’s not yet 10pm so I still have time to blog about today.

My day started early with the princess waking me up around 4 am. Yes, 4am! And she wanted to play. To entertain here, I turn on the laptop and show her the Dora screensaver. Well, that did the trick. After 30 mins, I was able to put her back to sleep. We ended waking up at around 8am.

LUPIE, is the word I got from a LUPUS forum way back 2002. When I am researching about my illness. From then on  I call myself a LUPIE and those that suffered the autoimmune disease associated with wolf (latin LUPUS) and butterfly (rash).

LUPUS is a rare disease not known to many. And in the Philippines its not that popular. In fact, I was a guinea pig to the first hospital I was confined. And to think they are a big hospital, I was the first case of lupus to them.

Am too lazy to write something sensible right now.

My morning started pretty well, with Anevay waking me up at around 8am. She always touches my face when she sees me sleeping and when i open my eyes, she would give me her biggest smile. She really is the light of my life.

But as the day progress, i feel different kind of emotions : anger, sadness, dissapointment, frustrations. It seems I am attracting all the negative feelings one can have. I somehow got some idea why this is happening to me but the negativity is just strong that I think the big D is visiting me again.

I should have been sleeping right now but I decided to take 30 mins before i nap to check on my email. But as I browse to my mail, the hubby sent me a YM message so the nap was cancelled.

Fortunately, I did check my mail, because 2 more money making opps came my way or came my blog way ;). Although the other one sent me into confusion. I will deal with that later in the evening. Since, my internet connection as usual is intermittent. I cannot even access GMAIL, i needed to access it so that I can send my application for the DSL to PLDT

Someone is offering me this vitamin FERN C. Its an alkaline vitamin C. I am actually interested in trying it because according to that someone, his sibling who has LUPUS is taking it and have been helping her fight LUPUS.

HMMM….

No, I am experiencing any flare right now. I am just thinking of ways to avoid any flares. As the adage goes “an ounce of prevention is better that a pound of cure”.

I cannot afford to be sick. Now that Anevay is growing and we wanted to accomplish another plan which needed me to be healthy.

The princess is already sleeping. I on the other hand has just finished talking to hubby through YM.

I am not sure if my friend LUPUS is trying to visit me again. But there are subtle signs that he might just be around the corner. Waiting for my immune system to go low and it will strike.

I have seeing hair in my pillow, in our bathroom and even the living room. Hair fall days are here again. Making me think if I should cut my hair short again. Also, depression is hitting on me this past few days. Not sure if its because of LUPUS or its the OFW wife syndrome. Whatever it is, I am trying to fight it but sometimes I succumb to tears just like right now.

Not sure why..but my body has been surrendering to the fatigue and stress that has been coming my way.

For the past few days, it seems i am always sleepy and drowsy. Maybe because of the NEOZEP i am taking.

Speaking of NEOZEP. It still is not taking effect on me. I still have cough and cold and its DAY 2. If tomorrow I still have cough and cold, on Monday I will be asking for a chest XRAY. To determine if this is already pneumonia. Or worst the fluid in the lungs have return.

Its been almost a week of me not feeling well. I am trying to disregard it and somehow I was able to do my task even if I have persistent cought and cold.

I am not sure if this is a flare up. Today I went to St. Lukes for my check up. I should have gone two weeks ago but I was not able to. Actually, that check up would focus on my pulmonary embolism and the next scheduled check up which is today is on my lupus.

Last week have been busy for me. As in its the busiest. Starting May 17. Because hubby was able to come home for vacation and that vacation was spent mostly outside the house, taking care of some documents or shopping for his things. I am not complaining though because it was time well spent. Although I wish it was longer.

I would write another entry for his visit.

Right now what I wanted to write about is the most fearful day of my life. That day that have changed a part of me. It made me realize the value of taking care of myself for the sake of my family.