The Past Month

I know.. I know... It has been a while...  But there is nothing really nice to talk about...

What did I do this past month?

I just had a scare of my life before thanksgiving.

I had really shortness of breathe and I thought maybe I am just way too fat. But my weight had been constant for the past months that I have been put on steroids. And I should be losing weight now since I am off of it. It wasn't a really big deal but gradually as weeks pass by, I can't even climb the stairs to my apartment. Which was fairly short. I got scared of having the possibility of water in the sac around my lungs. I know it could happen with anyone with lupus. But I was hoping it wouldn't happen to me.

After a few days I have an appointment with my doctor. She advised me that I should, if it ever happens again, that I can't breathe, to go to the ER,  as a precaution. I know I should have. But I thought, I'm going to see her anyway.

And as a precaution, they sent me to the lab so they could take my EKG. EKG came back normal. So they, my rheumatology doctor and the head rheumatology doctor of the hospital, wanted to do a lot of different exams so they could be sure of what is happening to me.

They would want another EKG, an X-ray and an ultrasound of my chest cavity. So, they sent me to the ER.

That ER experience was the worst experience I ever had with any ER. And the worst part of it is what I learned afterwards.

I was wheeled into the ER, from the Out Patient Clinic to the ER, which is fairly far when you are being wheeled. So I got to the ER, to the triage, told the nurse that I was sent here from the rheumatology clinic to see a certain doctor. Got my papers printed out with the doctors name, so that I could take the exam and go. But no one listened. Not a single one if them. Since I wasn't able to take the tests my doctors wanted, they made an appointment for me after one day. Yes, I went to my doctors appointment twice in a week. The head doctor insisted that I do so. I was seen by the doctor who was suppose to see me in the ER and asked me what happened. He told me he went to the ER and looked for me twice. I told him I was there from the time they wheeled me in until 7 at night. He was expecting me to be on one of the beds, which they didn't let me even though I told them I was suppose to meet a doctor their that my rheumies already talked to. The ER nurse told me that they are of different department and since all my vitals are normal, I am nor in eminent danger of dying any moment soon. And here I quote what she said, "you may be waiting for 30 hours and you won't die" My dear friends, specially to the people who aim to be nurses or are nurses, your purpose in the hospital is to help people feel better, may it psychologically or physically, but this kind of remark won't make anyone, even if they are not dying, feel bad. Your words are the only thing that could actually make us, patients, feel better, in any condition we may be in. You may be tired and over worked, but we are in pain, and remarks like this are not tolerable, not even if you have an excuse.

I told my doctor about this, and they are surprised that this happened to me, when earlier in the week, they did that same thing and it was done in less than 5 hours. I guess, I was the lucky one. 

The following appointment, I was seen very early due of a special request, and was seen, taken lab and exams. Everything is normal. They said it was probably due to my removal from Prednisone that caused this.

I am currently on 5mg of Prednisone, which I am doing fine with. And will be weaned off of it soon, I hope. I guess I am more stressed than usual. I have personal problems that I have to deal with too you know. But other than that, all is well. 

I do hope you guys had an awesome Thanksgiving. I had, with family and friends. We had  20 lbs turkey! a 15 lbs ham, mash potatoes, corn on cob and pumpkin pie! :)

This is basically my past month. And I hope I will be able to write on this blog soon. A bit busy recently, the holidays are coming, and I just moved to a new apartment. :)

My EKG, which is normal.

I lost count... No steroids and the effects...

I am not sure how long I have not been using Prednisone, but i am quite sure there has been a lot of changes already...

Recently, I have been having hives on my face.. Like it's a row of swollen patch of skin which I do not know the reason. I am allergic to a bunch of stuff, but I have been avoiding them for a long time, it's mostly food so I do not know what happened here.

I also have been having a bunch of pimple on my face. Like little nasty red ones, that has pus on the tip. There are little, so it's not really that nasty, but it's still pimples!!!! Not A pimple, but pimples!!

When I wasn't yet fully diagnosed with Lupus, I usually have this pain on my right foot. Maybe because I walk lazy or my steps are weird, but it's only the right one, on a specific spot. I think I have a tear or two by my middle foot arch, but it's posed no problem until a few months before I had my Lupus. But now it's back. I am not sure if it is because of my lupus, I will tell my doctor on my next appointment.

I have been feeling weird lately, I feel really depressed most of the time. Like depressed. It's a feeling of hopelessness that I have never felt before. I mean I do have my ups and down, but it's not like this. Maybe I am impatient, maybe. I don't know, I think I really need to be checked. Physically and mentally.

Oh well... My life has been a constant struggle. Just wish me luck.

Steroids free for 3 days...

My doctor advised me to stop taking steroids (Prednisone) after taking half of a 5mg pill for a week.

So, the first time that I took half a pill, my body was feeling a little bit achy... maybe because it is also around the time that I should be getting my period, but since I am in Depo, I wasn't having it, and my body, was just in turmoil. So I need to go back to a week of drinking a whole pill like I used to.

 I did went back to a whole 5mg pill for a work, and the week after I went to the half pill that was advised by my new doctor (My former doctor is already done with her internship, I assumed), and I did the half pill for a week.

Today marks the 3rd day of my "no steroids" day. I think I will stop counting when I lost track of it. There aren't many or major changes that happened. I notice that my fingers at the moment, 09/19/12 1:30pm, that my fingers on my right hand, only the pointer and middle finger, is a bit swollen on the first joints. My right foot, just a few inches from the ball of my feet, is hurting since last week, and I don't think it is part of the "no steroids" side effects. But if it become unbearable, I will drink ibuprofen. But hopefully, it's just caused I wore slippers too much the past month.

I am happy, that right now, I am on my way to better health and hopefully, will be able to have my baby soon... :) I am old you know, and my biological clock is ticking, and my baby envy at full mode!

But as for now... Yey!! One less pill a day!!!

Drinking.. Again... :P

I haven't touched alcohol for quite sometime since I have been diagnosed with lupus. I have researched about my medicines a few months ago like the things I am not suppose to do or don't do while I am taking it. And one of them is Prednisone and Alcohol.

I mean, it's not prohibited, but it would be better if you consume none of it. I do believe that everything done in moderation is ok. Like too much exercise can hurt you but too little or no exercise can hurt you too. :) But, since I am taking at least 20 mg of Prednisone in the beginning of the treatment I decide not to drink at all. :D It's an easy decision, as I am not a heavy drinker.

So last Thursday I just want to try, out of the blue, to drink. :) I choose the B&J Strawberry Daquiri. It's a wine cooler. It's basically water for me before and doesn't even make me drunk. But drinking it for the first time.. It was just weird!! :D

DAY ONE: I feel feverish. Like i feel like I am burning, literally. I asked my boyfriend if it was really hot but he said no, he also said I was red. So there I was, drunk faced but not drunk. :D after one bottle.

DAY TWO: Now day 2 is like normal day. I only drank one bottle but it just did nothing to me. I guess it was just my body wasn't really expecting alcohol. Or the other day was just the first time in months that I drank a bit of alcohol. But this day was different. No burning up, no redness, just sleepy. And that was exactly what I did.

I only did it for 2 days. I am not a drunkie and I do not expect to be one anytime soon. I am still taking Prednisone but only 5mg every day. So, I guess I could really drink once in a while, but not get drunk. I do not want additional side effects to the side effects of the medicines I am already drinking be made worst by alchohol. :)

1 week...

I have been delayed for one week. And no, I don't think I am pregnant. But as a precausion I will be buying pregnancy test. 

So you ask why I ended up with this conclusion? It is very simple actually. I have done my research about Prednisone, about Lupus and the other drugs I drink.

What is Prednisone?

It is a steroid medicine, that suppress my overactive immune system, so I will be able to control my Lupus flare ups.

What is a Lupus flare up?

Well it comes out in different ways in people. I, for example, have facial rashes and joint pain. But for some, who have misjudge some of its symptoms and found it late, could have kidney failure at worst.

Why did I think I am not pregnant and not worrying about pregnancy?

It is a fact that Prednisone could affect your hormone level. And I am currently down to one pill a day of Prednisone after being on 3 to 2 and half, to 2 to 1 and half, for months. And during those months that I have a huge dosage of Prednisone I am down to 1. And I have been on one pill a day for only 2 weeks before my period. And I think this affected it. Before, I was, coincidentally, just about to have my period or was done for only a couple of days after my period that my hormone levels (i think) was able to cope with the change.

Since all of this are only my hunch, why, you ask, I am not worried that I not pregnant? For one reason. :)

I know when I had sex and the past holiday, I have none! No time and place, and very busy with the holiday preps and my boyfriend's sisters being in town. And those babies are quite a handful. Lovely little ladies who are such spoiled brats (in a very loving way) Such smartasses too!

For example, after getting a Monster High doll for Christmas.

T: (brushing the doll's hair for the first time) Oh no! My baby (the doll) has Lupus!! It's losing its hair!

I was mixed emotions on this one. I don't know if I should be annoyed coz they are making fun of my sickness, or laugh coz of the funny comment, or be happy coz at least they know what I have and is aware of why I lost my hair.

They are young, but sometimes it gives me heartaches when they ask why am I losing my hair? why do you have that on your face? will it go? I tried to explain but sometimes, it's a little bit hard for them to understand. They don't understand, like some other people, why the one that makes me sick, are the same ones that keep them healthy. Oh dear Lupus researchers, I do wish you well and tell me how this happened to me.

Maybe one day, they will... (fingers crossed) and I hope to see them.

Happy New Year!

Happy New Year my loves!! :)

Another year to battle this disease, that you and me both hate. But, we have to deal with it. We can't do anything anyway. Might as well, right?

So, for the last days I haven't done anything really, just hanging out with friends, normal daily activities. The thing I am quite uneasy of is I am not on time with my period. The reason might because I am down to 1 pill of prednisone. We all know that prednisone affects hormones, so hopefully, it is all that there is.

I do want to be pregnant, but not during this time, not during this flare up.

Someday, I will have my family and be happy with my family.

Lupus, I hate you. But then I have to live with you. Hohummm... Another year with lupus, another year to survive...

Christmas is near!

Even though I am broke as broke can be, I am happy that a few days more, it's CHRISTMAS!! Yey!
I don't believe in Santa Clause, and still wondering why we are celebrating Jesus Christ's birthday in December when it has been proven scientifically that he was born during the summer. Personally, I don't really care that much.

So, I don't even care if it is the mood swings, the steroids (i bumped up my steroid a few days ago since I wasn't feeling better with 1 tablet of Prednisone) or whatever I am happy right now. :)

It's Christmas!!! Then it's New Year! Then it's my Birthday! Then it's my Papi's Birthday!! Then it's our 4TH Anniversary!!! Yey!!!! :)

So, Happy Holidays! Merry Christmas! Happy Hannukah, Happy Kwanzaa, Happy Winter Solstice! don't know what you celebrate! but Happy..... !!!

Christmas... and more photo ops to come...

It's a few days before Christmas, and my rashes are still there. It  really sucks when you have psoriasis at the same time you have lupus. I am still taking Prednisone, and taking a topical ointment that has steroids for my body psoriasis, and another topical steroid ointment for my face... ugh! I HAVE SO MANY STEROID THING  I WILL TURN TO A SHE-HULK SOON! But I don't actually mind being she-hulk, she is pretty hot even with green skin. :)

So, I am wishing that by Christmas, the redness of my rashes will be gone. Even only for that day. Oh well, this is my life now, I just need to accept and live it.

this is she-hulk, click to go to wiki for description

MERRY CHRISTMAS TO ALL! HAPPY HOLIDAYS! maybe I will post of our food if we have some.. LOL

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!!

Good days are here.. Part 2

If you have been reading my blog, or just crossed it sometime... There was this part when I thought that that the "good days" are here... by just drinking pain relievers in the morning, like Aleve or Tylenol, for my arthritis. Unfortunately, I was wrong.

I WAS SO WRONG!

Since I've drank steroids, Prednisone, I have been allergic to Aleve. I feel little ants crawling up my leg but in a bit painful way. A little like, maybe, restless leg syndrome (!?!). I'm not sure. It was annoying, painful and I wanna scratch it but it seems so much under the skin. So, Aleve for my arthritis is not an option anymore... :(

One drug down.

Next.

So since I can't tale Aleve, the other pain reliever that I want to take or the only thing that I like was Tylenol. I really like acetaminophen compared to ibuprofen, it works better for me. I even saw on the news at least only a month ago, that compared to other pain relievers, Tylenol or acetaminophen has less damaging effect to people who are pregnant or who want to be pregnant. And if you are a girl, this is important.

So, I thought I made the right decision. So, I thought I was being smart about this. I was wrong.

I wasn't addicted to the pain relievers. Because, when there are days that I don't feel pain, I don't take it. But it was the effect of the pain reliever and an empty stomach that got me. Not only do I have Lupus, I also have GERD. Its Gastroesophageal Reflux Disease, it's like heartburn but in the very worst of it. I also drink coffee in the morning, regularly. Just a cup, nothing more. But those were a bit of a NO NO.

Those doesn't cause Ascites though, which was the reason for my 1 week hospital hopping. I still need to find out how I had that. But at least, because of the GERD, I am now getting checked and have a primary doctor. Will be in touch with them soon. :)

"So, no more pain relievers for me, I can't have them since I am back on Prendnisone. I am taking 30 mg daily, unlike before which are like 10 only... sucks, they have to wean me down or else my body might go into some other kind of shock which is very dangerous. I hate being sick. So everyone else, take care OK? It's hard being sick."