Know Thy Rights

 Since I am a member of the Lupus Foundation here in the Philippines, I am updated with the current news and studies about SLE. I found out people with disability due to chronic illness - a disease that is long-lasting or recurrent like lupus / SLE or rheumatoid arthritis - can now avail of benefits such as discounts for products and services that they need, inclusive of transportation, medical services and products, and basic commodities. This was realized by Republic Act 9442 amended RA 7277 -- the country’s Magna Carta for Disabled Persons.

So, I research for related articles and for the requirements needed. On the first week of September, I decided to go to DSWD office in our municipal hall. I thought it would be difficult for me to get an application form but I was wrong. Ma'am Pineda gave me one then asked me to present a clinical abstract from my doctor and to bring 1x1 pictures. I didn't waste my time and prepared the needed documents. Last September 26, 2011, I got my Person with Disability ID wherein I can get discounts for products and other services. 

Visit http://www.ncda.gov.ph/ for more detailed information about this law. Know your rights. 

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

medicine of LOVE ♥

GROW OLD WITH YOU :)

Click the link and watch the video on youtube. 

Every scene in the video reminds me of J especially when I’m in pain. 

  

"Carry you around when your arthritis is bad." ♪♫♪♫♪♫♪♫

I'm just so thankful that I have him in my life. 

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. 

CHECK UP

Every month, I need to go back to my doctor so that he can monitor my condition. So, I was used to syringes, needles, test tubes, urine cup. We spend a lot because of laboratory test and professional fee of my doctor every check-up. It was hard for me also to go out and walk under the sun and go to my doctor’s clinic because rashes easily appear on my face or body when exposed to heat.

ID :)

          Currently, I go to Hi-precision Diagnostics everytime I need baseline data for my monthly check up. Since I am a member of the diagnostic center, I get 10% discount which only cost me for about less than 400 in all tests that I needed. Usually, the tests are ESR, Creatinine, CBC and Urinalysis. 

Jacoud's arthropathy

Pictures were taken on the night of September 7, 2011 here in our house. The pictures do not really show the appearance of the Jacoud’s arthropathy since they were just mild in appearance. When symptoms started last December 2008, they are edematous, they swell and red in color. When there is confirmation already that it is Lupus, I started to learn how to manage the symptoms but today I’m confused why the pain keeps coming back despite of the steroids and NSAIDs I’m taking. The pain is so excruciating to the point that I can see myself crying while holding my hand. Good thing, lupus headache is not active to me these days. This pain reminds me when I was in second year college wherein our PE focused on badminton and volleyball. I suffered with the pain when my hand needs to bend and my wrists need to be flexed in order to win the game. In volleyball, my hands suffered from redness – not only from the ball but also from the swelling. Everytime the ball strikes into my hands, I keep the pain inside me and I tried to be strong because I’m playing with others. And for the group to win I need to cooperate and to focus. I cannot excuse myself then because I still don’t know what my diagnosis is. Sometimes, I was assigned to position under the sun which is much contraindicated to a Lupus patient. But how would I know? I never knew Lupus before.

My three doctors advised me to do warm compress or to soak my hands or the painful part in warm water. And yes, it works. It provides temporary relief.

But today, the pain is constant. I can’t bend my wrist. I’m starting to be dependent to the people around me. I can’t open a bottle. I can’t put toothpaste on my toothbrush. I can’t handle heavy objects. I can’t handle the broom properly to sweep the floor in our house. I can’t do the proper way of shampooing the hair, scrubbing my body and I can’t change my clothes easily. When I feel urinating, I can’t pull down my pants or shorts and underwear faster because of the pain. J

My concern now focuses on thinking about my duties and responsibilities as a nurse. How can I perform the right care and interventions to my patients if my hands are in pain? On September 25, I’m attending BLS training from IMET and I keep on praying that hopefully the pain will subside and let my wrists bend without feeling the pain. How can I perform cardiac compressions if it only brings pain to my wrists? I am bothered now because my knees are also in pain. I want to cry.

Lord, thank you for giving me the title of being a registered nurse. You allow me to take care and show Your love to my future patients. May you give me strength and forget the pain I feel. Bless my mind, my heart and my hands in taking care of Your people.  

PROTECT YOURSELF

Yesterday, I helped my Mom in carrying and fixing the things she brought from their office. Look what I've found - a mosquito net (Olyset Net - brand name). Since here in the Philippines, Dengue Fever may happen to anyone and can be fatal, it is very important to be knowledgeable about the preventive measures. Mom decided to give it to our neighbors and to other people who may be at risk of the said condition.

So here are the words written in the pack:

Olyset Net

When mosquitoes come into  contact with Olyset Net, they are knocked down and killed.

Conventional Mosquito Net

When conventional mosquito net is damaged or improperly used, mosquitoes can easily enter and bite sleepers.

Directions for use

• Use the same way as a Conventional Mosquito Net. After stretching the net, tuck lower edge under sleeping mattress all the way around in order to prevent mosquitoes from invading.
• Do not wash your net in a lake, river or pond. Always dispose of water used for washing and rinsing the net in the lantrine or on the ground, away from home, animals and wells,
• Use only as a bednet.
• Efficacy against mosquitoes and physical strength is guaranteed for 5 years. There should be no extended exposure to sunlight or other heat sources.
• Insecticide and dosage: Permethrin 2% (W/W)
• Wide mesh size for improved airflow.
• Net composed of tough fibre.

To my fellow Lupus fighters, take care of yourself from whatever microorganism that may harm you. You know that we are very prone to infection. As much as possible, treat simple conditions like fever immediately before it can lead to complications that may be fatal. Also, a clean environment is a must. So LIVE HEALTHY and NEVER GIVE UP.

Nurse's Responsibility :)

            Nursing clients with autoimmune disease can prove to be challenging. Clients can experience acute exacerbations or crises with almost all of these diseases. Systemic manifestations can be as devastating as the musculoskeletal manifestations. Whether in remission or exacerbation, these diseases are always present. These results in considerable uncertainty, which can lead to a cycle of ineffective coping, disturbed self esteem, helplessness and powerlessness.  In many respects, the psychological and social problems that are associated with these chronic illnesses can be as disabling as the physical complaints. Physiologically, clients experience many common problems. The triad of pain, fatigue and stiffness must be controlled so that function is enhanced and maintained. Difficulty with self care is usually accompanied by sleep disturbances, altered nutrition, and impaired mobility. These can adversely affect the individual’s self concept and self-esteem and lead to social isolation.

            Because of the chronicity of these disorders, clients need skilled, knowledgeable nursing care that draws on the discipline of rehabilitation, counselling, and self-care. The unique role of the nurse for these clients is one that assumes accountability and responsibility for guiding and directing the client through the health care maze. Clients with chronic, usually systemic illness require multiple therapies and follow-up appointments for pharmacologic management, nutritional counselling, lifestyle assessment, physical and occupational therapy and psychological support. The personal and financial cost can exhaust the client’s enthusiasm, job security, support systems, and sense of purpose in life. The nurse can provide a sense of consistency, hope, and reassurance that the client can learn to cope with, and positively adapt to, the demands of a chronic illness. Clients with arthritis need the nurse’s expertise to teach them how to explore new self care strategies so successful adaptation to the disease is a reality. Nurses help clients learn to become partners with the entire health care team as well as with themselves. When clients assume the role of partner, they exhibit greater control, greater accountability, and increased self esteem as they learn self-management skills. This is nowhere more evident than clients giving themselves their bi-weekly or daily injections of some of the newer treatments.


Source: Black, Joyce. Et al.  (2008). Medical Surgical Nursing (8^th Ed.) J.B. Lippincott Company.

SYSTEMIC CHANGES with the PATHOGENESIS of SLE

©      Nervous System: Immune complex deposition, antineuronal antibody activity leading to cerebritis, seizures, organic brain syndrome and peripheral neuropathies

©      Integumentary System: Immune complex deposition, inflammation of dermal-epidermal junctions, vasculitis (fixed erythema, flat or raised over the malar eminences tending to spare nasolabial folds, erythematous atrophied plaques, scaling areas on the face, neck, and arms, petechiae, purpuric lesions, paleness)

© Musculoskeletal System: Increased fibrin deposits at synovial surfaces, inflammation of arterioles, venules and tendon sheaths; eventual necrosis, degeneration, and fibrosis of muscle tissue (joint pain and swelling, stiffness, limited movement, ulnar deviation of the second to fifth fingers and subluxation of the metacarpophalangeal (MCP) joints (Jaccoud’s arthropathy)

© Cardiovascular System: Diffuse vasculitis; inflammation and scarring of atrioventricular and sinoatrial nodes; inflammation of pericardial sac (high blood pressure)

©    Respiratory System: pleural inflammation, pneumonitis, pulmonary hypertension

© Digestive System: collagen degeneration and vasculitis leading to mucous membrane ulcers; vasculitis leading to organ infarction and necrosis

© Urinary System: Deposition of immune complexes in glomerular basement membranes (resulting to edema, proteinuria, hypertension, flank pain)

Source: Black, Joyce. Et al.  (2008). Medical Surgical Nursing (8^th Ed.) J.B. Lippincott Company.

CASE STUDY (Introduction)

“From the bitterness of disease man learns the sweetness of health.”

Everyone who has suffered some form of sickness or disease can reply with all certainty that good health is most sweet indeed. Most people realized how important a thing is once it’s already gone. This is perfectly seen in health. As we all know, health is very important to our life because it is in health where we achieve our optimal functioning as a being. It is in good health that we can do whatever we want. But due to modernization, we tend to abuse our health. We engage into different vices like smoking, drinking and worst is the use of prohibited drugs. And later we realized that even though we enjoy those things, we are only making our life shorter. And sometimes, we ignore those simple things without thinking that it might lead to bigger problem.

Systemic lupus erythematosus is a multisustem, inflammatory disorder associated with abnormalities of the immune system. Autoimmune diseases are illnesses that occur when the body's tissues are attacked by its own immune system. It is a chronic condition characterized by various degrees of increased disease activity that are generally followed by a less active, remitting course. So many classic immunologic abnormalities can be present in SLE that is considered the prototype of an autoimmune disease. Typically, multiple body organs and systems are affected at different times, thus producing widespread damage to connective tissues, blood vessels and serous and mucous membranes (Black, 2009).

Lupus nephritis is a serious complication of systemic lupus erythematosus (SLE; lupus) and is a major predictor of poor outcome. Most commonly, lupus nephritis develops early in the course of disease, but it can be a late complication as well (called delayed lupus nephritis [DLN]). Mortality is higher for lupus patients who develop nephritis than for those who do not (http://www.arthritis.org/lupus-nephritis-predictors.php).

  

Early detection and treatment of kidney disease in lupus patients can lead to a longer and better-quality life since lupus is one of many autoimmune diseases that attack internal organs, tissues, joints and other parts of the body. The researchers focused on systemic lupus erythematosus affecting the kidneys, the most common and serious form of lupus. In an animal study, researchers found out that four proteins (protease, PGDS, SAP and SOD) in urine test might be able to detect early kidney disease in lupus patients. Their goal was to detect something in the urine that appears only in disease. This study, if proven to be effective in humans, might be able to predict, diagnose and monitor kidney damage noninvasively. In the current study, the researchers screened the urine for proteins of mice both before and after the mice showed symptoms of kidney disease and focused on four proteins that were present in high levels after symptoms appeared. These proteins or their analogs had not previously been known to be present in the urine of patients or mice with lupus kidney disease. Monitoring urinary levels of these four proteins might also reveal more about the mechanisms of lupus since each protein is involved in a different biochemical process, so the stage of the disease at which each appears in urine might prove informative. Testing for these proteins might also have the potential to monitor kidney damage that results from diabetes, hypertension and other conditions (http://www.sciencedaily.com/releases/2010/02/100216101208.htm).

SLE is primarily a disease of young women. Peak incidence occurs between the ages 15 and 40 during childbearing years, with a female to male ratio of 5:1. However, the onset can range from infancy to advanced age. In both pediatric and older-onset clients, the female to male ratio is 2:1 (Black, 2009). Prevalence is 1.5 million Americans suffer from Lupus that is 1 out of every 200 Americans. Lupus affects African Americans three times more commonly than Caucasians. Asians, Hispanics, and Native Americans are also more commonly affected. 20% of people with Lupus will have a close relative (parent or sibling) who already has Lupus or may develop Lupus (http://cure4lupus.org). Estimates of the prevalence of clinical renal involvement in persons with SLE range from 30-90% in published studies. The true prevalence of clinical lupus nephritis in persons with SLE is probably around 50%, being more common in certain ethnic groups and in children (http://emedicine.medscape.com/article/330369-overview). Locally, the prevalence of lupus in the Philippines is 443,891 among the population of 86,241,697 wherein the word prevalence of lupus usually means the estimated population of people who are managing lupus at any given time. This statistics is based on an article entitled “Statistics by Country for Lupus”.

While lupus is a very common condition, many people are not aware of what it is and what can be done to treat it. With this case report, researchers and readers will learn more regarding the nursing and medical treatment of lupus nephritis that they can incorporate in their nursing practice. Knowing the possible outcomes and other complications of SLE, nurses and nursing students can plan and improve nursing care given to the patients. Awareness is the main reason in choosing the case. There is a survey that only 18 percent of women are personally concerned about lupus. The majority of respondents expressed concern about other health-related conditions, including cancer (67%), depression (61%), high blood pressure (58%), diabetes (57%) and arthritis (52%). Furthermore, approximately 29% could not correctly define lupus as an autoimmune disease, and 31% were not aware that women of childbearing age are most at risk. 50% of Lupus patients see at least 3 doctors, over at least 4 years before being diagnosed. In a nationwide poll of 1,000 adults conducted for the Lupus Foundation of America, 61% said they knew little to nothing about Lupus (http://cure4lupus.org).

(Last November 10, 2010, I submitted a case study about Lupus Nephritis. Our clinical instructor gave us the chance to choose a topic of interest. When we're having our orientation, I got interested when I saw the diagnosis "LUPUS NEPHRITIS" written on the white board. It was a challenge for me but at the same time, I enjoyed doing this case study. It was easy for me to understand since other tests were performed to me already. Hopefully, I can summarize or give you random facts about lupus someday and I'll post them in bulleted form.)

I HAVE LUPUS, but I will NEVER let LUPUS HAVE ME! :)

God is my STRENGTH :)

Fight fight fight!!

saw this quote somewhere in the net. I can't remember the source or the link. Then I decided to put a background on it.

Someday..

Dealing with Pain.

This picture speaks for itself. :)

SEPTEMBER is SUICIDE PREVENTION MONTH

At 7:30am the alarm went off and it was time to drag myself out of bed and start hurriedly getting ready for the day. I need to finish lot of things (wash clothes, pay the monthly electric bill, visit my grandma, help her to the dentist, attend the dance aerobics session and to meet J hopefully). But I decided to surf the net first before doing all the scheduled tasks. While reading Google News, I've learned that this September is suicide prevention month.

My question now to you readers - "Have you tried to talk to a friend or even a stranger?" Suicidal ideation may affect our loved ones or the people we know without even noticing it. So, it is very important to keep in touch with a classmate, friend, co-worker or a family member. Spend time together and find time to talk about problems. In that way,they could express their feelings. But beware my dear readers, sudden outburst of energy doesn't mean that a person who has suicidal ideation means that he or she's okay already. If that would be the case, never leave him/her alone. 

To all who have suicidal thoughts -

YOU ARE LOVED.

YOU MATTER.

YOU ARE NOT ALONE.

NEVER NEVER GIVE UP.

GOD LOVES YOU. 

If you need someone to listen to your problems, I am here. 

or if you're not comfortable in telling your problems to other people... 

Let God heal your broken heart.

Let God wipe your tears. 

Allow God into your life. 

 

ANGEL in DISGUISE :)

 

 Life is too short to waste time hating anyone. Don’t hate others. Forgive everyone for everything no matter how hard it may be. Remember fellow fighters hating someone is not good for your health. It may only give you STRESS which can lead to flare ups. STAY HAPPY and BEAUTIFUL!

What happen last September 23, 2010?

September 23, 2010

Life is too short to be angry at people around you. I know it’s wrong to lose hope now, but today I choose to be happy and spend a meaningful life. I want my last days to be momentous and exciting at the same time.

Being diagnosed with an autoimmune disease was a challenge given to me. I may not survive this battle but I’ve tried to fight -- fight for every pain, the struggle of taking different kinds of medicines just not to have a relapse of the disease condition and the most difficult of all is showing that you’re strong just to make your loved ones blissful.

Yes, I’ve been hurt by others. Well, those “others” refer to the people I once loved and still love. They are killing me emotionally and I ‘m just here left at the corner crying alone. Good thing, my Mom is there to support me and my heart really melts whenever she is giving me words of encouragement. She is the reason why I’m still here. Without her, I won’t be able to survive the pain I felt last year. Though, she offers lot of herbal medicines and ointments to me .. oh plus the Complete capsules she was selling, she never give up on me, trying to find a palliative treatment in my condition. God sent her to me as God gave me to her as her happiness.

I know, God is giving me more more more time to thank everyone. And sorry for those who are expecting that I’ll be strong until the end. Everyone has his own saturation point. Each individual has his own limits. And I guess I’ve got mine already. And now I offer to God my pain and my happiness.

(I was browsing my files in my laptop when I saw this document. Seems that last September 23, I want to give up. But look at me now - stronger, better and still fighting. I know depression may come into our lives especially when the pain strikes. But I assure you that being close to God can heal whatever pain you feel. Take a rest, PRAY, then sleep.)