How to live with lupus

LUPUS (SLE - SYSTEMIC LUPUS ERYTHEMATOSUS)

Lupus (SLE) is a chronic autoimmune disease that can affect several parts of the body including the skin (with its characteristic butterfly shaped allergic lesions), joints, muscles, blood, kidneys, liver and possibly other organs.  The body’s immune system has lost its ability to distinguish between natural antigens (the body’s enemies such as bacteria, viruses and foreign materials) and its own cell tissues. In simple terms, lupus seem to develop antibodies (which usually fight bacteria and viruses) that attack healthy tissues instead. 

Symptoms of lupus:  chronic fatigue, arthritis of the joints, ankle swelling on both sides, ulcers inside the mouth, hair loss, aches and pain, , skin rash after exposure to the sun or ultraviolet light, rash over the cheeks and bridge of the nose.

Cause of lupus is extremely complex; research suggests that when a specific predisposing set of genes is exposed to the combination of environmental elements, infectious agents or other factors seem to trigger the disease.

Treatment:  Because lupus is an unpredictable disease, in most cases it can be successfully treated and managed.  An effective treatment program for lupus includes medications, getting enough rest and avoiding sun exposure.  It is very important for lupus patient to keep to the program and to inform the doctor of any change in symptoms so that medications can be modified.  It is important to keep to the prescribed dose as flare-ups of the disease can occur if the dose is reduced too rapidly.

Medications:  The drug treatment of lupus is to reduce the inflammation within tissues affected by the disease and to suppress abnormalities of the immune system that are considered to be responsible for the tissue inflammation.  The principal drugs used in the primary management of lupus are:  corticosteroids (cortisone), anti-inflammatory drugs, anti-malarial drugs and chemotherapy.  It is also important to note that lupus patients often require other drugs for the treatment of complications commonly seen with the disease.  Examples of these types of medications include anti-hypertensive drugs for increased blood pressure, diuretics for fluid retention, anti-convulsants for seizure disorders and antibiotics for the treatment of infections.
 
Corticosteroids:  Prednisone is damaging but it is an extremely effective drug to control active lupus.  Steroids are powerful drugs that suppress inflammation and with long-term use, there are problems with it.  Even low doses can lead to fractures and osteoporosis.  It also increases the risk of coronary artery disease.  You must take calcium and vitamin D to prevent fractures and you must follow a lot fat, low cholesterol diet to prevent cardiovascular disease.  Other side effects that may be caused by the long period use include cataracts, muscle weakness and avascular necrosis of bone.

A high dose of steroids given over an extended period of time is more likely to cause side effects than a lower dosage given over a shorter period of time. 

Side Effects:  Some of the more common side effects associated with steroids are:

Changes in physical appearance:
acne
a round or moon-shaped face
puffiness of the cheeks
weight gain
thinning of the skin & hair
easy bruising

Stomach discomfort such as:
dyspepsia or heartburn

Psychological problems:
agitation
depression
irritability
insomnia

Increases levels of:
cholesterol
triglycerides

May cause:
diabetes
cataracts
increase in susceptibility to infections

Caution:  Steroids must not be stopped suddenly without first discussing it with your doctor.  Stopping or changing the dosage quickly can make you very ill.
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Many patients refuse to acknowledge that they are in a depressive state and will actually deny that they are feeling unhappy, demoralized or depressed.  This group of individuals often experience what physicians called ‘masked’ depression.  These patients resist the notion of emotional distress, substituting in its place various physical complaints.  Physicians, who are familiar with their patients’ usual mood and personality, as well as their lifestyle and situation, are more likely to recognize changes associated with Depressive Illness.

Similarly, patients are more apt to open up about their feelings when they are encouraged to do so by a physician they trust and with whom they are familiar.  Emotional drain caused by the continuous series of stresses and strains associated with coping with the chronic illness and medical condition.  Other causes may be the many sacrifices and losses required by the continuous life adjustments that a person with a chronic illness must make.  Depression is very stressful and anxiety producing which may exacerbate the lupus.  Live with your lupus but we can help prevent complications.

 

Build Up One’s Health Through Nourishing Food:

1.Eat food high in iodine i.e. kelp, seaweed, algae/crude salt.

2.‘mao gen’ (a type of root of a plant)

3.Lily Bulb and Lotus Seed Thick soup:  30g lily bulb, 15g lotus seed, 750cc water
Wash ingredients and place in a pot, add water and bring to boil and simmer till all ingredients are cooked.

4.Wild Yam and Green Bean Porridge: 60g wild yam,30g green bean, 0g brown rice,750cc water.
Remove skin of  yam, wash and cut into cubes. Wash beans and rice and soak for 4 hours. 
Place all ingredients into an electric cooker.  Suitable for breakfast.

5.Mixed Juices (5 types of veggies & fruit):  1 apple, 150g cucumber, 150g bitter gourd, 100g green capsicum, 120g celery. 
Wash all ingredients. Remove skin of apple and cucumber and cut into pieces. 
Remove seeds from bitter gourd and  capsicum and cut into pieces. 
Chop the celery and place all ingredients into a fruit juicer and extract juice. 
Drink immediately.

6.Kangkong Vegetable & White Radish Juice:  500g organic kangkong, 250g organic radish
Quick-boil kangkong for 1 minute, cut radish into smaller pieces.  Place both in fruit juicer and extract juice. Drink immediately.

7.Double Fungus Soup: 5g dried white fungus, 5g dried black fungus
Wash the fungus and soak in water to soften. Add 1000cc water into a pot with the fungus and boil till fungus is thoroughly cooked. Add raw sugar or crude salt for taste.  Suitable as light snack.

8.Drink 2500cc or above of water daily.

9.All 3 meals must be low calories high fiber food and also before bath to scrub the body as part of detoxification.

10.Cultivate the habit of clearing your bowels before bedtime.  This will clear your large intestine thus allowing your small intestine and stomach towards digesting food smoothly to the large intestines increasing metabolism and healing.
Food To Avoid:

1.  Avoid eating chilli, garlic, pepper.
2.  Avoid eating types of bamboo shoot.
3.  Avoid eating ‘heaty’ fruits i.e. durian, lychee, longan, plum, mango, cherry, custard apple.
4.  Avoid eating food that are fried, deep-fried, smoked, grill/barbeque, and bake.
5.  Avoid eating alfalfa sprouts, broad bean, soybean, green pea and other beans.
6.  Avoid all alcoholic drinks.
7.  Avoid eating prawn, crab, shellfish, mutton, which can set off an allergy.
8.  No processed food i.e. fish ball, sweet non-spicy, instant noodles, canned food, smelly tofu.
9.  Avoid food high in sodium.
10. Avoid exposure to sunray, use an umbrella for protection.

 

 

Good Friends, Anne & Steven

Tonight I received a telephone call from my good friend Anne, we (my husband and I) were very sad to hear of the passing away of her beloved father and her mother in-law. We grieved together with them at this time of their loss.

Both Anne and her husband Steven have been friends to us for many years. In was way back in the 1990s when we first met at a church camp with their sons, Gary and Ivan were very young then. There’s a bond present between us that has gradually strengthened throughout the years, whether we are close together or miles apart.

Just last December, we attended Gary’s wedding and Ivan is now in the University. How time flies!

We are very blessed to have friends like Anne & Steven. Always giving and going out of their way to help. I remembered a few years back, they were so kind as to drive me to Malaysia to see my husband who was working there then. How thoughtful! We were caught in a traffic jam at the causeway and ended up having a very late dinner. This buffet dinner picture was taken by me with their camera.

Anne & Steven have graciously shared their love with us which is the most of any individual can offer another. It’s very important that they know just how beautiful our life is with them in it and because we are so close, we simply want to remind them that they truly are our best friends.

We want them to know that we grieved together with them at this time of their loss and that we stand by them always.

People Can’t Tell How Sick You Really Are

I was officially married two months after I returned from my missions’ trip and went to Israel for my honeymoon. I wasn’t exactly feeling at the top of the world as there were so much changes that I could not cope. As the new flat was not ready, I had to stay for two weeks with my in-laws and moved again to stay temporary with a friend’s family. Being quite a private person and having to share my space now with my husband’sfamily and a friend’sfamily proved too much for me to handle. I don’t take changes very well and tried to adapt to my new married life.

But I was very unhappy and also very tired from all the long hours of work and traveling time. Saturdays and Sundays were very trying for me as by this time of the week, I was so drained of my energy. Especially on Sundays, after church service, it would be back to work till 5pm. After work in the evenings, we would visit my in-laws or my mother before returning home. Mondays may be my off days but it was also a cleaning and laundry day. Eventually my visits to my mother and my in-laws became less frequent as I was experiencing chronic fatigue.

I believed all these could have added more stress to my existing health condition. Imagine in just a short span of less than a year, I had changed job, went for an overseas mission trip, got married, went for honeymoon and moved house three times.

Most people would not understand that one of the major things that happened in lupus is chronic fatigue and there is no way to measure that. The problem with lupus is people can€™t tell how sick you really are!

The only person who knew I was really sick and unwell was none other than my husband. He had been trying to convince me to consult a doctor but I was afraid and kept pushing it off. One day, we coincidentally met my mother in the bus and my husband grab this once in a life time chance and reported everything to my mother that I was sick and my legs were swollen and I refused to consult a doctor! My mother threatened me that should I refused to see the doctor the next day, she would be in my office to personally see to it!

I went to consult a GP and was later referred to a local hospital because of edema. Further blood tests confirmed that my SLE had flare up. Because of my nephritic syndrome and I was also leucopenia and thrombocytopenia, I was put on prednisolone 45mg/day and started IV Cyclophosphamide. However I had frequent URTI as well as pneumonia, the IV cyclophosphamide was abandoned after 4 doses. I was given amongst other drugs Azathioprine but was later stopped because of my low platelets count. By this time, I had all the side effects of the drugs: nausea, vomiting, malaise, hair loss, fever, increased susceptibility to infections, unusual bruising etc. After 3 months of medical leave and no pay leave, I had to quit my job. It was really tough without a job! No job means no income!

My dog Zapper.

She lived to a ripe old age of 14 yrs old and 10 months.

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1.My sister bought this 3mths old Tshih Tze from a pet shop and brought it to my house. I was so surprised how dirty she was!

2.Pappy’s first toy, my bathroom slipper.

3. Two weeks with us, what a difference!

4.This is when she’s 8 months old.

5. Please I must at least take a nap.

6. Pappy, can you show me your tongue?

7. An angel.

8. One of her favourite pink bear.

Eat and Live Healthy…..start from here

STEP ONE

Feeling stressed?  Because you don’t know what you should do or where to start?  You can start right here.  Remember, we cannot rush it, make changes one step at a time.  Start with one thing healthy and reduce the other unhealthy thing.  Example:  Drink sufficient amount of water daily and cut down on sodium intake.

Thought I shared with you that I have benefited very much from this book ‘Complete DIY Food Guide For Life (in Chinese) by Mr. Billy Wang and Mr. Oyoung.  For a start, we can get lost in the world of healthy living and healthy eating but with the help of this book, at least I know where to start and also because it is from a trusted source.   I have gained much knowledge with the help of this book.  It covers from the different types of acidic food to high alkaline food, the classification of yin and yang principles in food, the energies and flavors of foods.  The different types of diseases and ailments and how to find a diet/recipe and lifestyle that is most suited to your needs.  And it has hundreds of healthy recipes and pictures from noodles, rice, juices, soups, beverages etc.  Now you too, can put this knowledge to use.
 
If you are suffering from SLE, you may find the instructions on page 76 of this book helpful.  This translated version in English is my way of helping those who do not understand or cannot read Chinese.   It gives you the basic information on what food to take and what food to avoid.
 
Note:  This is intended to serve as a guide only.

Building Up One’s Health:  

1.  Eat food high in iodine i.e. kelp, seaweed, algae.

2. ‘Mao gen’ (a type of root of a plant) Soup:  60g fresh ‘mao gen’, 60g fresh ‘Lu gen’ (reed rhizome), 1000cc water.
Wash all ingredients and place in a pot, add water and bring to boil, turn down heat and simmer for further 30 minutes, drink the soup only.

3.  Lily Bulb and Lotus Seed Thick soup:  30g lily bulb, 15g lotus seed, 750cc water.
Wash ingredients and place all in a pot, add water and bring to boil, turn down heat and simmer till all ingredients are cooked.

4.  Chinese Yam (Shan Yao) and Green Bean Porridge:  60g yam, 30g green bean, 30g brown rice, 750cc water.
Peel the yam, wash and cut into cubes. Wash beans and rice and soak in water for 4 hours. Place all ingredients into an electric cooker to cook.  Suitable as a breakfast.

5.  Mixed Juices (5 types of veggies & fruit):  1 apple, 150g cucumber, 150g bitter gourd, 100g green capsicum, 120g celery. 
Wash all ingredients.   Peel the apple and cucumber and cut into small pieces.  Remove seeds from bitter gourd and capsicum and cut into small pieces. Chop the celery and place all ingredients into a fruit juicer and extract juice.  Drink immediately.

6.  Water Spinach (Kang Kung) Vegetable & White Radish Juice:  500g organic water spinach, 250g organic radish.
Quick-boil water spinach for 1 minute. Cut the radish into smaller pieces.  Place both in fruit juicer to extract the juice. Drink immediately.

7.  Double Fungus Soup: 5g dried white fungus, 5g dried black fungus.
Wash the fungus and soak in water to soften.  Add 1000cc water into a pot with the fungus and boil till fungus is thoroughly cooked.  Add raw sugar or sea salt for taste.  Suitable as a light snack.

8.  Drink 2500cc water daily. (inclusive of soups, beverages)

9.  Ensure all three meals must be low calories and high fiber food.  And as part of detoxification, scrub your body with loofah before bath.

10.Cultivate the good habit of clearing your bowels before bedtime.  It will allow the small intestine and stomach to digest food more efficiently and passing through the large intestine thus increasing metabolism and healing.

Food To Avoid:

1.  Avoid eating chilli, garlic, pepper.
2.  Avoid eating types of bamboo shoot.
3.  Avoid eating hot energy fruits i.e. durian, lychee, longan, plum, mango, cherry, custard apple.
4.  Avoid eating food that is fried, deep-fried, smoked, grill/barbeque, baked.
5.  Avoid eating alfalfa sprouts, broad bean, soybean, green pea and other beans.
6.  Avoid all alcoholic drinks.
7.  Avoid eating prawn, crab, shellfish, mutton, which can trigger off an allergy.
8.  No processed food i.e. fish ball, sweet non-spicy, instant noodles, canned food, smelly tofu.
9.  Avoid food high in sodium.
10. Avoid exposure to sunray, use an umbrella for protection.
For other healthy recipes/lifestyle, you can check these websites: 
www.billywang.com.sg  and www.oyoung.com.tw 
Mr. Billy Wang is a multi-talented person. A very famous DJ with Mediacorp Radio, Founder of Care Cancer Society and a healthy lifestyle teacher/trainer/nutritionist and Mr. Oyoung, nutritionist & teacher, with an extensive 24 years experience is from Taiwan.  
 

Kindness Is Always In Season

Bring God’s love and kindness into someone’s life today.
Expressed in acts of kindness and helpfulness for those less fortunate than we are.

 

 

My Story: My Struggles and Victory in Living with SLE (Lupus)

Discharged From Hospital

After been discharged from the hospital, I had to return for weekly reviews, as I got better it became fortnightly then monthly. I was glad that my condition was getting better but I was also experiencing the side effects of the prednisolone. I got worried when I saw the puffiness on my face. Friends were also making comments like I have put on weight and my face looked different. I was quite upset and decided to stop taking my prednisolone.
That was a great mistake! I remembered the shocked look on the doctor’s face and I got reprimanded as the doctor explained the consequences that could have killed me.

I had no one to talk to about my fear, I did not know what I should do and I did not know where I could turn to for help. The things that kept me strong were my faith in God, the emotional support from my beloved fiance and friends who kept me in their prayers. (I was already engaged in 19th August 1990 before I had SLE)

The months that followed, I defaulted in my follow-up visits to the doctor. Despite my SLE condition, I went for a missions trip to the Philippines, again it nearly cost me my life. During my trip, I had to walk for miles under the hot sun, trekked through the thick jungles, climbed two mountains before I could reach the destination. In total, it took 3½ days to arrive in one of the mountain tribes of the Philippines. The mountain climbing was really tough! I remembered, the mountains were very steep and we had no ropes, you just had to hold on to anything you can find. Before we could reach our destination,
I was already thinking about the possibility of returning via the plane or any form of land transport i.e. horse, cow or whatever!

Mission accomplished via walking but itâ’s a different route altogether as we were headed toward another village. In all, I had been in the Philippines for almost three weeks and had finished what the team and I were sent to do. We headed back to HQ in the city and spent the last two days at the quarters before returning back to Singapore. Then I became very sick - I vomited, had fever and diarrhea, my pastor was ready to send me to a local hospital but I refused. I hanged on and made it back to Singapore. Thank God I survived!

My Story: My Struggles and Victory in Living with SLE (Lupus)

More Bad News

The doctors said that additional tests were needed to evaluate the extent of the damages done to my kidneys caused by SLE. If it was serious, I might have to go for dialysis or a kidney transplant. It scared the wits out of me! “I want my mum!”, “God where are you?” I became a very frightened little girl thinking that my days were numbered.

After the biopsy and tests, it was confirmed that I had SLE marked with nephritis. There was no need for dialysis or a transplant yet but more drugs were added onto my existing concoction to control the disease. I was informed of some of the side effects of my medicines. That one drug that left a deep impression on me was prednisolone a corticosteroid drug - to control lupus. Corticosteroid drugs when used for an extended period may produce changes in physical appearance such as weight gain, puffiness of the cheeks, thinning of the skin and hair, easy bruising, stomach discomfort, depression and mood swings, diabetes, increase the risk of infections, cataracts, osteoporosis (thinning of bone). Because of my lupus nephritis, I was also given a cytotoxic drug “azathioprine”, a highly toxicities drug that would cause gastrointestinal disturbances and increases a patient’s risk for the development of cancer. These side effects that were mentioned, I have “tasted” them all. (I will share my experiences with you in the later part of my story.)

My dengue fever was actually a blessing in disguise according to the doctors. As SLE was not easily detected, the symptoms were somewhat similar to be flu-like. Had it not been for my dengue fever, my lupus condition might not be detected at this stage. The consequences would have been disastrous.

I had experienced fear, depression, confusion, anger, pain, anxiety during my stay at the hospital. I wished I could just sleep it off and wake up feeling a new person again. Indeed I had become a new person who had to live with Lupus for the rest of my life! I did not want to think anymore, I just wanted to go home.

My Story: My Struggles And Victory In Living With SLE (Lupus)

Diagnosed With SLE

I was diagnosed with Systemic Lupus Erythematosus in the year 1991. Two days before Christmas, I felt really sick but could not make time to see the company’s doctor due to my heavy work schedule. I finally dragged my body to the clinic just before lunch time. Even with the 2 days medical leave given by the doctor, I still had to returned to work. I just had to make do with the medication given. Just within two hours, red tiny spots began appearing all over my arms and neck. I panicked and telephoned the doctor and had to return to the clinic. The doctor suspected it could be dengue fever as I was also running a fever and called for an ambulance but I declined it. I had to finish some work first and promised to go to the A & E department at the hospital. I finished my work at about 6.00pm and went home to take a shower hoping to feel better. But instead I felt weaker than before. I took a cab to the hospital myself.

By then, the red spots were all over my body when I arrived at A & E department. I had to be admitted immediately but I asked the doctor for permission to go home just to bring my pajamas & toothbrush! Actually, I really didn’t have the strength to walk anymore as I felt pain in my bones & joints and was also feeling feverish. That night in the ward, the pain became unbearable. Painkiller was administered to me but it did not help at all. A few hours later, the doctor reported that my blood platelets plunged to a very low level and confirmed what was suspected as Dengue Fever! The next 3 days of my life was excruciating painful.The blood platelets were still going dangerously low. On my fifth day, the doctors confirmed that besides the dengue fever, I also had what they termed as “Systemic Lupus Erythematosus” (SLE). After all the explanation given on SLE, I still couldn’t get it! Simply because I have never heard of SLE.