#LHandSign for Lupus Awareness

"..but you don't look sick, you look healthy and fine."

We usually hear these words from other people. But we want them to realize that not every disability uses a wheelchair, not all disabilities/illnesses are visible. 

So here I am..supporting lupus awareness by  throwing my LHandSign for the first time. :) 

I know, this is not an easy challenge but giving up is never an option. We must keep fighting lupus for lupus doesn't define who we are. We still have a choice to be happy, to live our lives to the fullest. If you need someone to talk to.. I'm here. You are not alone. 

Sending my hugs & kisses for you my dear lupus fighters! :)

CT Scan Part 2

Few days after my lower abdominal CT Scan with IV and rectal contrast, here I am again ready to conquer another challenge of my lupus life. :)

Lupus can affect or attack the central nervous system. Since I have SLE, I've been having severe headaches/migraines commonly known as lupus headaches. And lately, this migraine-like headache makes me wanna give up. So my doctor referred me to a neurologist.

Dr. Mamangun, my neurologist asked me few questions and I told him my past and present illnesses. He also performed neuropsychoclogical tests. To be sure and to rule out CNS lupus since I experienced vasculitis few years ago, he ordered CRANIAL CT SCAN with IV CONTRAST. So what is CNS Vasculitis? CNS Vasculitis is a very rare complication of SLE caused by inflammation of the blood vessels of the brain. It is diagnosed by a blood vessel study and requires treatment with high dose steroids. 

After my check up with Dr. Mamangun, I went at Angeles University Foundation Medical Center to have Cranial CT Scan (a diagnostic tool used to create detailed picture of the skull, brain, paranasal sinuses and eye sockets. The contrast dye helps highlight some areas better on the images. Good thing I did not eat or drink for several hours prior to the test because I'll be receiving contrast. My creatinine was normal too. 

The procedure itself is painless. Their instruction to me is to remain still. At first, they took images without the contrast. Then, a nurse inserted an intravenous injection where the contrast will pass through. A doctor also assisted me while the contrast dye is being inserted. I was reminded to notify the scanner operator and the doctor immediately if there is difficulty in breathing, nausea, feeling of warmth, vomiting or itchiness. I did not feel anything except for the metallic taste of the dye and the cold feeling in my right hand. 

So here is the interpretation/result of my CT Scan:

TECHNIQUE: Non-contrast and contrast enhanced 16-multislice axial CT images of the BRAIN

FINDINGS: 

1. No evidence of extraaxial and intraaxial hemorrhage. No territorial infarct is evident.

2. No focal mass lesion or edema.

3. No abnormal parenchymal and meningeal enhancement.

4. No gross ectatic vessel seen in the major vascular structures.

5. The sulci, cisterns, extraaxial spaces and ventricles are normal.

6. The posterior fossa is relatively preserved.

7. The paranasal sinuses and tympanomastoids are well aerated.

8. The calvarium is intact.

In short, all normal. So that's it. It was merely lupus headache. Keeping the mind and spirit healthy is as important as keeping the body healthy. Cut down your stress. Do not be a pessimist.  Exercise and diet are nice combination to be healthy. Also, know when to take a rest and sleep. Eat healthy foods and avoid caffeine and processed foods. Do not abuse yourself  and know your limitations. Remember to avoid things that may trigger lupus like stress and sunlight. 

As of now, I'm still experiencing migraines and lupus headaches. But still I'm trying my best to have healthy lifestyle and take my medicines religiously. 

And if you're feeling like giving up.. JUST PRAY and feel your pulse. Never forget to thank the Lord for the pain and for another priceless gift - the gift of life. 

Lupus and Ovarian Cyst

Hi there my dear lupies! :)))) Been through the darkness of life these past few days... Another challenge. Another test of faith. 

Last week, I texted my doctor about the pain in my right pelvis, lower back, and can feel inguinal pain too. I also noticed that there is swelling or bulge on my anterior abdominal wall. I complained this pain when I was in  third year college. My doctor suspected hernia so he referred me to a surgeon. But the surgeon ruled out hernia and said it was peripheral neuropathy and ordered me to take vitamin B. 

On second week of June 2014, I felt severe pain.. severe pain.. severe pain. Same part. But the pain was really severe and I can also feel pain on other parts of my body.  So I texted my doctor. Again, he asked me to consult to a surgeon for he is again suspecting a hernia. Again, the hernia was ruled out. The surgeon ordered CT scan to confirm his diagnosis of Abdominal Wall Mass t/c Fibroma.

It was my first time to experience this. In fact, I enjoyed the procedure itself except for the contrast that was inserted thru IV and rectal which made me uncomfortable before the procedure. Luckily, my friend Gade assisted me so I'm not that anxious throughout the procedure.

The next day... I got the result.. and findings showed that it may be ovarian cyst. So for now, we're only doing "watchful waiting". Will monitor myself for 6 months then will have ultrasound to know if there are changes in the cyst. For now, we're praying that it is only a functional harmless cyst and not a pathological one. 

Yes, I've been through the darkness of life but I realized that life is filled with more light than darkness. I want to thank my family especially my Mom, aunties, uncles, cousins, J's family and of course J, and my friends who never fail to remind me not to give up and letting me feel that I am loved. 

At the age of 23, I knew what it feels like to have Systemic Lupus Erythematosus. This diagnosis is only one of the thousands illnesses I may have. For in SLE, we must accept the fact that we are vulnerable to different illnesses BUT you must also accept that belief in recovery and living a positive life can lead to healthy and happy living. So, it doesn't mean that you have SLE, you will just lose hope. There will be always light. 

Just believe.

Btw, I can endure all the pain brought by SLE but not the feeling of seeing my family unhappy because of my condition.. so for them, I will smile, I will stay strong, I will be brave. I will never give up.

Sunday Thoughts

Secret to have healthy life - be happy!

It's not always about medications, doctors, eating what is right, doing what is right. Happiness is the key to have less stressful life. Spend time with friends and family. And PRAY. Pray because we should thank God that He allows us to wake up every morning and always gives us unlimited chances to enjoy and appreciate His blessings. Whatever problems, illness, disease, painful symptoms you're experiencing right now.. just hold on, never give up. Remember let us be thankful that we can still feel pain because pain reminds us that we are alive.. that we are humans. Always look on the brighter side of everything. Life is not perfect but it is in our hands on how we can spend our life meaningful. 

HAVE A NICE AND MEANINGFUL DAY MY FELLOW FIGHTERS. :)

Lupus and Exercise

My favorite! Flat abs workout :)

Due to fear of having osteonecrosis, my doctor advise me to have healthy lifestyle, diet and EXERCISE! As much as possible, he did not want me to gain weight. Caltrate + a glass of milk is a must also since I've been taking steroids for years. :) So, I keep on encouraging myself that I should exercise and maintain my body. Kuya Jr, my cousin/kuya, suggested Zumba for my daily exercise. He even gave me a copy of flat abs workout, cardio, live zumba and zumba basics. 

Felt so great after doing the flat abs workout :)))))) Sorry for my puffy eyes! :D

Lupus and Sunlight

It does not mean that you will not enjoy life if your doctor diagnosed you with Systemic Lupus Erythematosus. Protecting yourself from sun exposure is an essential part of lupus management because it may cause lupus rash or can even trigger a serious flare of the disease itself. But what can I do? It's summer time! I'm not avoiding the sunlight but I'm trying to avoid excessive sun exposure. (still a compliant patient here :) ) Make sure you are equipped with the proper protection from the sun.  Sunblock lotion with high SPF, hat, pashmina, umbrella, shades especially those who are photosensitive like me. 

So here are some pictures from our Baler trip. (plus our 5th year anniversary celebration ) 

With my date :)

Before going up.

Pashmina: To keep me safe from sun exposure. :)

with ate Rachel :) still I'm ok :)

MOTHER FALLS :)

But first, consult your doctor if he will allow you  to do these kind of activities. ;) 

Obligatory jumpshot :)

ROUTINE.ROUTINE.ROUTINE

Learn to love needles when you have an autoimmune disease. :) Needles, medicines, checkups.. etc etc .. Keep fighting dear lupies! :D I love you all.

I'm Back! :)

Hello my dear Lupus fighters :) I miss my blog. I miss writing here in my blog.
FINALLY.. had the chance to write again.
Been into remission and flares of Lupus. But here I am. Still have the ability to manage, to fight, to believe.. believing that I can.
I know you can do it also. Never give up. I'm here for you. ♥

-happylupuslife

Heart's Day

February 14, 2013 :) It feels so good knowing I am a part of their Valentine's Day. People from other countries asked me if I can surprise their loved ones here in the Philippines. Also, I made this candy roses and sell them on the day itself. I put the butterfly not only for design purposes but it represents my SLE journey. If you want to see more pictures or the detailed story you can go to www.facebook.com/mixedstuffs

Candy Roses

Lovely butterflies <3

Ready for business :)

Wide awake o.o  Did not sleep just to finish these candy roses. But it's all worth it. So thankful for this day.

Future.

Happiness at Work :D

Who would have thought I'm sick? :) SMILE!

Done with my part! SPEAKER # 2 :)

will never miss a camera shot! haha

and I'm busy doing the powerpoint. But I love doing such things!

It is indeed true that there will be positive result at work if you're in good terms with your co-workers. As the saying goes, "Two heads are better than one." Working at RHU is a great opportunity for me to apply my nursing skills. And I've got the great blessing you can find at work -- NEW FRIENDS! :)

Old to New

Say hello to my new Twitter background! :))))) Supporting Lupus fighters all the way! I love it. 


BTW. Happy Mother's Day to all mothers out there especially to my angel - my Mama. :)

10th of May :)

Decided to update my blog before going back to work :) 

HAPPY WORLD LUPUS DAY!

And to show my support, I'm wearing my butterfly scrub suit. NEVER EVER GIVE UP! Please help me in spreading awareness about Lupus. Thank you! ♥

I Know I Can

Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time.

Thomas A. Edison

To my fellow fighters, please be strong. Please hold on even for one day. Then try to live the next day until everything will be okay. I know you can. I'm with you. Lets do this together. Together we will fight Lupus. 

Our Day

Thursday 10th May, 2012 is WORLD LUPUS DAY!!!!! 

Don't forget - text or e-mail 10 people who do not have lupus and tell them.

The Voice of Lupus Foundation (VLF) has deemed the day PURPLE THURSDAY. We are asking persons to wear purple on this day!! How far can we spread the message? 

Message from The Voice of Lupus Foundation.

Last Post for 2011

I'm not the type of person who would spend money just to buy an expensive coffee. But someone told me that I should enjoy life, try new things and to spoil myself. So before another year ends, I bought myself a Starbucks planner. It means starting a new chapter in one's life.. a new beginning.. an opportunity to change what's wrong.. to ask forgiveness.. to forgive others.. to spread love and thank God. Hopefully, I can inspire more people and let them know what SLE is. Goodbye 2011. Good vibes 2012! :)

Existing in Spite of Adversity

Sudden Thoughts

Praying for more days, weeks and years to be in this world.. to experience life.. to be with the people I love.. to meet different people in the community and learn from them.  

EVERY SECOND COUNTS.

To Participate or Not?

My doctor gave me something to think about. He opened a topic about this BLyS and BAFF and explained it to me. Currently, they are doing a clinical trial about this BLys-BAFF and their subjects are lupus patients. He asked me to do research first before deciding. He also asked for my Mom’s consent. If ever I’ll pass the screening, the treatment process will be every two weeks and drug will be administered via subcutaneous route. 

WHAT IS BLyS or BAFF?

BLyS or BAFF in Lupus and Other Autoimmune Diseases

B lymphocyte stimulator (BLyS), or B cell activating factor (BAFF), has been associated with a wide range of B-cell mediated autoimmune diseases, including lupus, lupus nephritis, rheumatoid arthritis, multiple sclerosis, Sjögren’s Syndrome, Graves’ Disease and others. BLyS, or BAFF, is a critical survival factor for B cells, and is required for B cell development and maintenance. Its involvement in B cell survival has been demonstrated in animal studies (Kalled 2005) and in human (Avery 2003) in vitro studies. BAFF is primarily expressed by macrophages, monocytes, and dendritic cells; BAFF receptor (BAFF-R) is expressed primarily on peripheral B cells. BAFF is specifically up-regulated in human and animal models of autoimmune diseases, such as systemic lupus erythematosus (SLE), Sjögren’s syndrome, and rheumatoid arthritis (Gross 2000; Cheema 2001; Zhang 2001; Groom 2002; Kawasaki 2002). These finding suggests that high levels of BAFF may cause excessive survival signals to auto-reactive B cells, possibly as they pass through a critical tolerance checkpoint while maturing in the spleen. Inhibition of BAFF is expected to block stages of B cell maturation, and subsequent antibody formation. Through this pathway, a BAFF antagonist could potentially modulate a variety of inflammatory and autoimmune conditions.

Although the cause of lupus is still not completely understood, B-cell activation and auto-antibody production are known to be central to the process. Evidence has emerged that over-expression of BLyS plays an important role in this disease process. In preclinical studies, transgenic mice created to over-express BLyS begin to exhibit symptoms similar to lupus. In addition, treatment of these same mice with BLyS antagonists appears to ameliorate the disease.

Source: http://anthera.com/science_blys_baff.asp

Doctor’s Prescription

Aspirin

Drug classification:

·         Non-opiod analgesic

·         Anti-inflammatory

·         Antiplatelet

·         Antipyretic

·         Antirheumatic

·         NSAID

·         Salicylate

Due to elevated Erythrocyte Sedimentation Rate (ESR) and reactive Anti-streptolysin O (ASO titer), Rheumatoid arthritis was the first diagnosis made by the first doctor who examined me. I took them twice a day for about 1 month.

Amoxicillin

Drug classification:

·         Antibiotic (penicillin-ampicillin type)

My second doctor asked me if I was allergic to Penicillin. My mother answered that I am allergic to penicillin and seafoods. But she was not sure about it. So the doctor decided not to give me penicillin. Instead, he prescribed Amoxicillin to me because of my first diagnosis.

Mucosta

I remember that the doctor prescribed this drug to me because I’m having gastric upset. Maybe it was due to aspirin intake.

Methylprednisolone

Drug classification:

·         Corticosteroid

·         Glucocorticoid

Since Aspirin cannot relieve the pain I feel, my second doctor decided to give me methylprednisolone. I only took them for one week. The pain diminished after taking the steroid drug. And I chose not to go back to my doctor as he told me since I do not feel the pain anymore. But after one week, the pain came back and it alarmed me. My Mom and I decided to have second opinion to other doctors.

Ciprofloxacin, Cefuroxime

            These antibiotics were prescribed to me because of abnormal results found in urinalysis.

Prednisone

Drug classification:

·         Corticosteroid

·         Glucocorticoid

This drug became my best friend for almost 3 years already. The dosage depends on the signs and symptoms I experience. Prednisone may bring adverse effects like vertigo, headache, paresthesia, insomnia, seizures, psychosis, cataracts, increased IOP, euphoria, depression and glaucoma for long term therapy. There will be a problem also in sodium and fluid retention, hypokalemia and hypocalcemia. Once you are in this drug therapy, there will be immunosuppression and you are prone to have osteoporosis. What I hate most among the effects??? – WEIGHT GAIN!

Methotrexate

            The action of the drug is to inhibit cellular replication. This drug let me experience episodes of dizziness, malaise, blurred vision, acne, nausea, vomiting and photosensitivity. I also experienced having hair loss especially on the front part. When I comb my hair, strands of hair were easily removed and I can see hair on my pillow when I woke up every morning.

Folic acid

            This drug was administered day after I took methotrexate to reduce the side/adverse effects that methotrexate may bring to me. 

Arcoxia

            This is a pain reliever drug that is so expensive but very effective.

Nutrilite B complex

            My doctor referred to me to a general surgeon since he was suspecting hernia because of the pain and lump below the right lower part of the abdomen or the hip. The surgeon examined it and said that it was not hernia but Neuritis. So, she prescribed me vitamin B complex as an intervention. There was a decreased in pain but eventually, pain keeps coming back.

Virlix

            This drug was given to me because of the rashes appeared in my whole body. I researched on the internet and asked my fellow patients about this kind of rash. I send picture to them and they said that they also experienced it and their doctors diagnosed them Vasculitis. But my doctor did not tell me about vasculitis.

Caltrate

            Since I am prone to osteoporosis and because of the pain I feel in the hip, my doctor prescribed me this drug. He also added that I should exercise to have weight loss because I need to prevent Osteonecrosis. He doesn’t believe that it is neuritis but he believes that it is related to osteopenia and if not prevented can lead to osteonecrosis.

NSAIDs and Paracetamol

I’m taking these drugs when I’m in severe pain and when I’m having fever and lupus headaches.

Reminders:

·         Be a compliant patient.
·         Take drugs religiously.
·         Have time to research on drugs you are taking.
·         Report immediately to your doctor if there are adverse reactions experienced.
 ·         As much as possible, do non pharmacologic methods in order for you not to exhaust yourself in drinking sooooo many drugs.