Need to fix my blog...

I want my blog to be more personal...
I want it to be more like me than just getting something out of the usual blogs...
I am not your usual girl... And I am more than what people think of me...
I think, while I have a lot of free time in the world, I will study HTML codes too... :) maybe there will be some improvement in my blog... :)

Oh how I miss you...

I know, I know, it's been 3 days... the thing is, I spend too much time doing nothing recently. I guess since I am out of my period my depression is slowly going away. I am not really depress ok, nor do I have depression. I just felt a little low during the days I have my period. Maybe that is why I was craving for sweets and stuff.

So have you heard? I have made my final decision! I WILL NOT BECOME A NURSE. I mean, it's not for me. I am not a people person. I would rather be left alone, and leave people alone. I have been in a hospital, and I can't do what they do. I imagine myself in their position, working with me while I was in the hospital. I was a whiner, and I still would whine all the time! I don't even remember how many times I pressed the nurse button just to ask for an apple juice or ice. Hehehe :) You have to understand, that was all I could eat and drink. Even though I was on normal diet at the hospital i can't eat it. My mouth and stomach can't handle it for the first few days.

My salute to the people who want to be a nurse, but my goals are Biologist, MicroBiologist and Physicist. General courses, no majors, just for my brain. But if you are asking how will I make money, I will be a researcher with a business on the side. :)

My life is only complete when I marry my papi and have babies of my own. The rest are trivial. So, for the moment, the goal is to be healthy, stay healthy and be Flare up free... :)

Lupus is a girl!

I just realize that Lupus is girl. 

 

Why do I think it is a girl? isn't it obvious? It's affected by hormones, which makes it Hormonal (LOL) and has it's ups and downs (Flares). And it mostly attack women. Also, like any other woman, it can't be controlled other than itself. :)

Just a few analogies that I can't think of. I am still in my way in accepting Lupus in my life. It just came to me all too sudden at the peak of my womanhood. This is how I cope, with humor and weird quirky analogies.

I'm bored, still haven't done my readings... I am thinking of not thinking about Lupus, then maybe it will stop existing. I forgot what it is called in Logic. Oh well, another day... another day...

i need more time...

I am a slacker, and i think I always need more time for everything. But I just realize that I don't actually need time, I just need to adjust more on my time thing. :) So here I go to adjusting and time management.

Soon, I will really start to do my research. I don't want my blog to just be completely ignored and just left out.  I want this disease and what I am dealing with be well know. I may look OK, but I am not.

Another frustration - part 2

I can't get or even be seen by a financial agent because I do not have an i.d. I guess it's the world conspiring. Following up on all the things I have been slacking on. It's just hard for a slacker like me. :) but then, I need these stuff. It's important for me anyway. Oh well, c'est la vie...

10/26/11
**edit: thugs to things "i think that is why I have so many views! LOL**

p.s. still haven't got time to go to the DMV.. maybe Monday.. :)

Frustrations - part 1

I know I have been slacking writing in my blog. I haven't been feeling good lately. Frustration after frustration comes.

I got my skin biopsy result last Monday. I don't know wether to take it as a good news or a bad news. I wanna look at it this way. The good news is I don't have discoid lupus (skin lupus). The bad news is I got something that is almost the same thing as lupus, psoriasis.

I haven't actually read anything about psoriasis so I don't actually know what I am dealing with. So I need to research about it too.

Speaking of research, I have been slacking on my research too. I want to do all this research so I will know more about what I have. But all I am able to read are also exactly what my doctors told me. What I already know. Which sucks. I want to read something new. I want to read advancement in this disease that I have. I know it's not deadly if well maintained but to have something that is not curable is like holding a bubble in your hand and trying not to pop it. Which eventually happens anyway. I feel fragile. I don't want to feel breakable.

I always thought I was immortal. Or at least I hope that I am. I want to try everything. I don't want to be held back just because I have lupus. But I have to for the moment. I have to wait. I have to get healthier. How long will it take? I don't know. With this "flare up" disease, I don't even know when or what will happen the next time I will get it.

Sleep Deprived. Part 2

Still not able to get a straight sleep of at least 6 hours. Still wakes up in the middle of the night and awake for at least 2 or 3 hours after. Still waking up at the same time though. I think it is because I took a nap or something in the middle of the day. I am thinking of trying this, sleep if you can thing.

I don't exactly know what it is called, but one of my classmate some semesters ago is doing it. He sleeps anywhere, anytime, if he can. Like you I saw him sleeping for a good 10 minutes in class. But in total, he would only sleep like 3 hours a day. it's like he has a power nap all the time that keeps he alert and awake. But I don't think I would be that intense. I still try to go back to sleep every time i wake up. But then sometimes I would think of something to do that I forgot or would like to see. I blame Facebook for being sleep deprived! LOL

I would try to discuss it my doctor when I see her again.

Also, I took 25mg of Prednisone today, some of my joints, which don't hurt even when I have my Lupus flare up, are hurting. And I think it's because I went from a 30 to 25 mg in 2 weeks, and 25 to 20 in a week. I don't know for sure, but I am hurting. And since my doctor told me that if I am not feeling well about I just raise it back to what it was. So, i only have been drinking 20mg for 3 or 4 days. Sucks. I would really like to be out of the steroid pill. It's a bit hard to be weaned down from it. But then that is the only thing that's actually controlling my skin rashes and joint pain. Noticed too, that I have been eating a lot, so I am trying to control that... hehehe

So far, and as far as I am concerned. I think I am getting good health. :) so thank God!!

My First - 10 Things I am Thankful For...

All the time I complain about a lot of things, and I forgot to thank about things I should thank about. So I decided to make a list of things I should thank about every Friday. :)

10 THINGS I AM THANKFUL FOR:

1. I am thankful for the doctors and nurses at the LAC-USC Medical center for giving me the best experience during my medical appointments.
2. I am thankful for my baby, Omar, who goes with me all the time to my medical appointments, most specially when I forgot my medicine. He took it to downtown so I could drink it on time.
3. I am thankful for my mom, who arrived yesterday, safe and sound. She said she will take care of me.
4. I am thankful for the belly pain that happened, because of you I now have the best medical insurance that anyone could have in the Los Angeles City.
5. I am thankful for my housemates for waking me up every time I have an appointment.
6. I am thankful for the bus and train drivers that drove me safely to my destinations.
7. I am thankful for my boss, who is understanding and gives me time for my appointments.
8. I am thankful for my dad, who gives me support and help, financially. I love papa!
9. I am thankful for my brother and sister, for sometimes helping me with the housework.
10. I am thankful for our friend, Adrian, for feeding us all the time.

For the first every 10 things I am thankful for...  this is something I will do every Friday. :) will blog about something else later...

Sleep deprived...

So these past few days, I have been sleep deprived... I only sleep for four hours and wakes up. Feels refreshed and normal... It's weird.. I love to sleep. I guess my body, with all the pills and medications that I have been drinking my body got too much energy stored.

The thing is, my brain isn't catching up with my body... It still needs more sleep. So I have noticed. I've been forgetful this week. I even forgot my medication yesterday! ;(

Right now, I have been trying to go to sleep normally. I try to make myself tired to be able to go to sleep for at least longer than 6 hours. Alas, to no avail, I woke up at 2 am today and fell back to sleep around 4. Woke up at 6:10 to get ready for my medical appointment...

It's almost 12pm now... I'm so sleepy... Will go sleep maybe...

My paper crane family

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"Paper crane family..."

Thank God for Blogger App!

I'm right here, right now at my doctor's appointment. They need to do a TB test on my just to make sure that the symptoms I have are not from tb. Since most of my complications are not of the normal lupus kind.

Example? I have ascetis. Means I got fluid in the sac that surrounds my stomach, liver, intestines, etc. While the most common kind for people with lupus is having fluid in the sac that surrounds the heart. So what if my complications are different?!? It is way safer and less painful than the one that lupus patients normally have.

Also, they are figuring out if I only have systemic lupus. Remember a week ago I had skin biopsy. They are thinking of psoriasis or discoid lupus. So hopefully that ends well for me. Will be coming back Monday, October 17, so they could remove the thread from my back. It's healing so it's itchy and annoying...

It's 7:51. My appointment is at 8. Think I will be sleeping for a few minutes on the office today. I woke up at 4:30. I think I'm getting a sleep disorder because of the medication that I'm taking. Oh well, whatever that makes me better.

@ LAC-USC Medical Center

Research...

I haven't even done or read anything yet. I just have them printed out and ready to be highlighted. I am lagging it. I guess I too lazy. Hahaha

I have a doctor's appointment tom. They need to put a TB test, so they could determine that my skin rashes and stuff are not because I have tuberculosis, that it is Lupus. Maybe they are just making sure that I am not sick or anything. :)

I have to wake up early tomorrow. :) So I could go to the doctor and be there at 8:30. Will be eating Popeye's tomorrow!! Wohoo!! They have one by the hospital that's why. Hehehe.

Lazy Weekend..

It's not all the time that I get something to share. Like yesterday. There is nothing really important yesterday. Just a lazy Saturday in Los Angeles. I have good news though. Yesterday I started taking 25mg of Prednisone. My doctors are starting to wean me down on the steroids. But they put me on a medicine that I can't be pregnant while taking it. They advise me to let them first figure out what I have, make sure that it is Lupus. If they know what they are dealing with it would be better for me.

They decided that it is better to put me in contraceptive, so right now I am still figuring out what kind I would like to try. I think I would rather try the pill, since it is daily, and I am not sure when my next period will be. I am not really comfortable in putting in something in there, and then it has to stay there (?!?) So maybe the patch... Maybe the pill. Definitely not depo-provera or lunelle, since it actually stops you from having periods, and makes you gain weight too! Knowing me, I will probably gain weight and be like a TON!!! Oh well, all these will be discussed once I am with the gynecologist. :)

If you have any questions, comments and well wishes, don't hesitate to comment below. :)

Thanks!

First Doc Appointment

I was able to meet former President Marcos' doctor yesterday! He's a tiny little Filipino guy, I forgot his name, but I will take a not of it next time.

Well, I saw my doctor yesterday. She is really very accommodating regarding my questions, and does seems a little concern on my health. Not all doctor radiates concern. Maybe it her eyes. Its very gentle. :) My boyfriend even wan't to even ask her of her number. Hehehe! She is very pretty.

So they are putting me on medication that I can't have a baby or else it will be very dangerous for me and the baby. They have to put me on contraceptives just to make sure. So I am researching on contraceptives and see what I should get. If you have any suggestions, you could comment down there. I don't want to take depo ok? It will make me fat, and will make my period stop from coming. I don't want to mess up my cycle like that.

Will start my new research on my meds and stuff... :) i need to know what I have, and what I need to be healthy. I need to know what they are giving me, and need to know more about the possible side effects of the medicines.

Oh well, that is life. :)

Look at my prescriptions... :(

It's a lot.. :(( I don't want to drink pills anymore.. :((

Rain Pain. :(

It's cold today in Los Angeles. And my belly is hurting. I am not sure that there is a connection but I think the puncture that I have on my belly, when they drained the fluid out, is hurting me a little. It might be healing but it is like poking me right now. :( But not a lot, bearable. Hohumm.. So many things I don't understand, so many things to learn. And I need to learn them fast too!

Living life is hard already. Living life with Lupus, is harder. So be thankful y'all! Because you are well and fine. I am thankful because even though I have lupus, I am ok, and will be ok! :D

It's cold out there, bundle up and make sure you keep yourselves warm! HAPPY HUMP DAY!
Doc's appointment in LAC-USC tomorrow. Wonder how long they will be keeping me there. Sucks! I think I will be getting more tests again... Sheeshh!! When will be the blood and urine taking stop!!!

I think I becoming a MUTANT!!

Or it could only also be the affects of steroids in my body.. hehehe
I didn't mean that I became stronger, but maybe, since I am on steroids, the pains are not felt a lot. It's nice to be back to my normal self again. :)
Thank you for my loving friends who worries about. I am fine, and I will be fine...

Busy busy Monday

It was a very busy, busy Monday.

I had my first appointment today... I went to the Los Angeles County - Edward R Roybal Comprehensive Health Clinic. So many first time thing to do. And they didn't even have my appointment on the computer! Ugh! I have to go to a lot of different rooms, wait for minutes and go come in and back to different rooms. I was there around 7:40 and when I was seen by the doctor it was already almost 11 am.

I went in for a skin biopsy, they wanted to know if the things I have on my skin is also a type of lupus, Discoid Lupus. So hopefully, it's just some allergic reaction to whatever not another kind of Lupus. Oh well, it's better to know about what I have than not to know anything about it.

Educate self, learn and move on...

That is what I am doing... I need to learn more about what I have then maybe I could live life according to me, not according to Lupus. :) Life is hard, but life is boring if there are no challenges. This is my challenge and cross to bear. Live life and move on... My goal is just to be healthy, when all the water in my belly is gone, I will be back in my bike again... :D

Oh, last complaint for the day... They wanted to take blood samples so they could test me for syphilis and stuff like that, so she did put the needle in my elbow pit and MISSED MY EFFIN VEIN!! I already told her my vein is still swollen from the time I was in the county hospital. So she moved the needle around. It hurts!!! I got a bruised over a bruise... Sheesh! Very incompetent. I thought they were suppose to be very good. She wasn't. Thumbs down on that part!!!

I applied for ORSA today. It's a health plan for people of Los Angeles County. I applied, and I got approved! I have free outpatient visits until next year!! YEY!!

It's 1 am... gtg sleep, will see what will happen tomorrow. By the way, I got a new perscription too, an ointment for the skin stuff I have... 2 times a day, until Friday. hmmm... Good Luck with that.

Here are pictures of my skin before the biopsy, and the suture I have. No shower for me for a day... :(

This is the rash on my back

This is the sutures after they punched a hole through my skin. That's what my boyfriend said it look liked. 

I'm nervous...

I am going to have a skin biopsy tomorrow, due to some rashes on my skin since I got the Lupus. I wonder what kind of meds the dermatologist will be giving me again...

Hohummm... I need to be really careful. This Lupus thing is manageable. I could survive, live life to the fullest. Have the family I want.

 I need to get better... I will get better!!!

Over and Underactive...

According to what I have read, from the Lupus Foundation of America website. Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS. In AIDS and HIV the immune system is UNDERACTIVE, while in Lupus the immune system is OVERACTIVE.

According to http://immunedisorders.homestead.com/

Immune dysfunction classically comes in two types:

• Underactive, weakened immune function, or immunodeficiency.

• Overactive function, autoimmunity or autoimmmune disease

"Are you thinking what I'm thinking???"

Maybe, there is a cure for AIDS and HIV. Maybe, it is through other people's disease. Maybe, Lupus, if only known how people acquire it, might be the solution for AIDS and HIV. But then, it's kinda hard to think that I would like to have AIDS than to keep having Lupus. So maybe, its only one way around.

I would like to think that someday Lupus could be the cure for AIDS. :) Imagine how many Africans out there who has the disease since they were babies. So hopefully, we soon will get a better understanding of LUPUS, then maybe, it could be a way to save other people's lives... :D

"If you have more than you need, please visit http://www.lupus.org/newsite/index.html. Donate and make this disease known which affects 5 million people through out the world!"

Links:

• http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnunderstanding.aspx?articleid=2232&zoneid=523
• http://www.lupus.org/newsite/index.html

I'm starting my own research... LUPUS

I am a scientist. :) LOL. And the best way for me to understand things is to read and experiment about them. But since in the matter I can't experiment. I think it would be better if I just do a research for better understand of this matter. Casually of course, so I would be able to understand more about what I am dealing with, and what I should be looking out, forward and to.

Wish me lots of luck!! :D

Bowel... Moving!! and Fast!!

I was scared some days ago since I haven't been going to the bathroom regularly. I specially take note of whatever that is happening in my abdominal region recently, like since a week ago, since I have some liquids drain from it due to ascites. It was the most painful procedure that was ever done to me! Although there is localized anesthesia, you still can feel the needles.. Yes! NEEDLES!! I can still feel being poked inside!! It was painful!!!

Well, whatever right, so I am scared and what do I do when I am scared or nervous? Comfort food... and I have been craving for ice cream, asked my papi to buy me a dulce de leche flavored ice cream and sooner or later!! Voila! Poop!! Lol (TMI?!? maybe) For someone who just suffered so much pain because of her abdominal region, movement there is crucial. I need less pressure there. I still think I have water roaming around in there so I still have a little pressure there. hooooh!!! it was fun! running in and out of the bathroom again! hehehe

I got my ice cream. I got my bowels moving. This was a good day! :)

References/Links Used:

• Ascetis - http://en.wikipedia.org/wiki/Ascites
• dulce de leche - http://www.haagen-dazs.com/products/product.aspx?id=73