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Recap: Hospital admission, Paracentesis, and Lupus Positive Diagnosis

After I was discharged from the hospital comes a lot of almost bi-monthly visit to the Rheumatology doctor, new other symptoms and other kinds of diseases accompanied my Lupus. Medicines to take care of the symptoms; medicines to take care of the side effect of the main medicine used for my symptoms.

Well, I can't really do anything about it really, just need to swallow the pills, drink my water and move on with life, anticipating the next time I need to drink medicine. Which is usually after 8 or 12 hours.

Life with lupus can be tiresome, devastating to some, but it is definitely life changing to all inflicted by it. It is hard at first, you go through all the stages of grief.

Grief doesn't only imply to the loss of a loved one, in my case, it is a loss of good health. We must recognize that we all are grieving, once recognized, I know we will all be level-headed, and will move on in bettering ourselves. 

Systemic Lupus Erythematosus or SLE is the most common lupus. The type that affects every single organ of the body.

I had the textbook SLE, Lupus, from the very beginning. I had the malar rash or butterfly rash to some. And the accompanying joint pains that is experienced by more than half of the people with lupus. I actually have a tell-tale spot, that when it hurts, it means I need to increase Prednisone just for that one day, or at the minimum, drink a pain reliever. When my right heel hurts, I am about to have a flare. That is my tell-tale spot.

I think people with lupus should listen more to their body, and notice the differences that happen before a flare up. I have one, my right heel pain, maybe you have one too!

I am actually really lucky to have the most common symptoms of Lupus. They were able to diagnose me easy, and not like other people who had to wait and some wait for months or even years just to find out they have lupus and not some other disease their doctor was treating them for before. Even with this, it is still not easy to deal with lupus. The most annoying part with Lupus, in my case, is when one thing is better, another messes up. This is the summation of my 4 years diagnosed with lupus. 

SLE positive diagnosis -- labs are good -- lab found protein in urine -- c4 almost at normal, kidneys not so much -- admitted to hospital for feeling sick -- kidney biopsy -- LUPUS NEPHRITIS 5 -- kidney doing good -- PULMONARY EMBOLISM (1 day before my birthday on 2013) -- Kidney doing better -- managed kidney a lot better -- DIABETES (because of weight gain and being on prednisone for years) 

Awesome right, something positive happens, something bad happens next. It feels that I can't get a break. Seriously!! :(


References:
Definition of SLE: https://www.nlm.nih.gov/medlineplus/ency/article/000435.htm
Definition of Malar rash: https://en.wikipedia.org/wiki/Malar_rash
Malar Rash photo: http://www.cbsnews.com/pictures/what-your-looks-say-about-your-health/10/
Definition of Lupus Nephritis: http://www.webmd.com/lupus/lupus-nephritis
Definition of Pulmonary Embolism: http://www.mayoclinic.org/diseases-conditions/pulmonary-embolism/basics/definition/con-20022849
Definition of Diabetes: http://www.mayoclinic.org/diseases-conditions/type-2-diabetes/basics/definition/con-20031902

It's done... Not going to be bothered by it...

So finally it pushed through after a long time of asking for it to be done..

I finally have my kidney biopsy done...

I was taking Coumadin for at least 6 mos now, and I was hoping of not taking it for the rest of my life... My INR is finally on good levels recently, (that's what they said) so I am hopeful that it is not for my entire lifetime.

They are holding my Coumadin for now... I hopefully I do not need to take it.

So... At exactly 1:30 pm I was on my belly being ultrasound. So they could find my kidneys. They had to poke my at least 3 times. It sucks knowing a bit of medical terms and it gets frustrating when this medical students do not know cephalic, and caudal means. And it's awesome for them to use adipose instead of fat.

Apparently, my back has too much adipose that they hit that a lot... I get it I am fat OK? Goddammit! I was in the hospital for already 3-4 days and I was already starting to swell up.

It wasn't a fun time. It was numb but i still feel it for some reason, I mean the pressure no pain. It really wasn't a fun time. After the biopsy thing, I had to be on my back for 24 hours, meaning I need to use the bed pan. I do not like bed pans, the are weird. And I really do not like asking someone to help me pee. Why would I want that?? I am a grown woman!! But I got no choice.

Oh well... now that is done... :) results next blog... :))

I am not happy right now...

Actually, I do not really know what I am feeling.

Fatigue? Lower leg edema? What??

That is the thing that sucks about lupus. It's like you have this mixed feeling, and you are not even sure if it is your emotions, your hormonal change, or your lupus acting up.

And today is one of those days... :(

hopefully tomorrow won't be the same as today...

my nth "It's been a while"...

It has been a while since I wrote on my blog. I do not really know what to write recently of all the things that has been happening. But as of right now, I want to inform you guys that I am alright and will continuously going to be alright. :)

For a few months now, I have been nursing a bilateral pulmonary embolism for trying to get healthy as part of my new year's resolution. Which apparently is not good for me, or for any with Lupus for that matter. Although, I do not have that antibody that makes people with Lupus have blood clot. the antibody is called Antiphospholipid antibody or APS. .By itself, APS is already an autoimmune disease, but it also comes out to people with SLE. So I am always checked it this antibody is out on my lab exams. My doctors have been checking and I do not have it, so they were wondering how I got my blood clot. But, as with everyone else new to having lupus, every day is a different day.

I have been getting my daily encouraging inspiration on instagram. I followed this bunch of people who also have Lupus. There is a lot of us out there. And all, fighting an invisible war inside us. There are good days, there are bad days. Well, hopefully, today is a good day for me. :)

And I leave you with a repost from someone, I forgot who. I will note it next time.

I shared it on my facebook (which is private) but it came from  this  person.
Check them out.

References:

Antiphospholipid antibody - http://en.wikipedia.org/wiki/Antiphospholipid_syndrome

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!!

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

Lupus and Me... yes me...

Hi, I am Joan Paula Ocol-Abella. I am 27 years old. I have been divorced for 3 to 4 years now. And I have Lupus.


I think I should write that every time, what do you think? I should I should own it. Remember that I do have it and it will be a long way and struggle to be better. I have lupus, lupus doesn't have me. OK, I might have gotten that from some cancer survival thing from long time ago, but whatever keeps me going right? Support guys. :)


First, this is what you need to know about Lupus. It is an autoimmune disease which no one knows why it happens to certain people, and how to end it.

Second, there are different kinds of Lupus, some minor or mild, some very aggressive and makes a lot of people very sick. I unfortunately, have the most common kind but if not followed up or treated right could make me end up in a very bad state. I have, wait for it, Systemic Lupus Erthematosus (SLE).


So, who does actually have Lupus? I know no one in my family having it. As I have researched before, here are the most common people who could have Lupus:

• women
• ages 25 - 40
• asian, hispanic, african american

And I was like, "WHAT THE HECK?!? Is this disease targeting on me or what?"

this is what it said according to womenshealth.gov 

Anyone can get lupus. About 9 out of 10 adults with lupus are women ages 15 to 45. African-American women are three times more likely to get lupus than white women. Lupus is also more common in Latina, Asian, and Native American women. Men are at a higher risk before puberty and after age 50. Despite an increase in lupus in men in these age groups, two-thirds of the people who have lupus before puberty and after age 50 are women.

So dear women of the world, be careful. You may think you are very healthy but is not. 

Unlike other people, I have only been recently diagnosed with Lupus. Some people who had suffered great pain as they were growing up because of this disease have been living a normal life now, most probably. You see, Lupus is and will always be there, I was just diagnosed later or my "Flare ups" came in a little late. Maybe its the stress, maybe its the change of conditions in my surroundings. For the past year, there has been a lot of changes in my life, some good, some bad but it's a change. I think Lupus was my body's response to this change that this change is wrong for me.

I am Joan Paula Ocol-Abella, I am 27 years old. I have Lupus at the peak of my life.


Links/References:

1. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001471/
2. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004008/
3. http://www.womenshealth.gov/publications/our-publications/fact-sheet/lupus.cfm#b