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Our office is located at
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near Hospital Pharmacy.
Tan Tock Seng Hospital,
11 Jalan Tan Tock Seng,
Singapore 308433
Tel: 6357 8037
Fax: 6357 8039
Send Comments to:
info@rass.org.sg
weihowekoh@gmail.com
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Hands
To illustrate rheumatoid arthritis (RA), a pair of hands is inevitably used. It would be a pair of misshapen hands, when put together; the fingers would be pointing outwards. The knuckles would be knobby and it's not a nice picture. Usually the phrase used would be: arthritic-gnarled hands.
I have a pair of such hands and they are not entirely useless, but there are certain tasks that I can't do. I can't use a pair of chopsticks effectively, so I eat noodles with a fork, twirling the noodles with it Italian style. I can't do needlework as gripping a fine needle takes tremendous effort. Handling small objects can be challenging, but on a daily basis, I can manage.
However, there are people who need to use their hands effectively in their work. Then, the consequences can be devastating.
An episode of TV series 'Strong Medicine' had a story about a young woman who was diagnosed with Rheumatoid Arthritis. She was hearing-impaired and relied on sign language to communicate. The pain and deformity caused by RA prevented her from signing effectively, and the story ended when she opted for surgery. I suspect the writer of this story might have had first hand information about RA
I recalled this particular episode of the series when I read an article in the magazine 'Arthritis Today' (USA) about actress Camrym Manheim (from TV's legal drama The Practice). Besides acting, she's a sign language interpreter and teacher. Like the woman in the above story, she found that she couldn't sign properly and sought treatment. But it was only after numerous consultations that she was diagnosed with RA.
Perhaps a more poignant example would be that of the late Dr. Christian Bernard. He was the South African surgeon who performed the world's first open heart transplant operation in December 1967. But the renowned surgeon was forced to retire in 1983, due to stiffness brought on by RA in his hands. He continued to teach and write and died in 2001.
There are a few ways that I relax by and one of them is watching movies. This in turn can lead me to read a book, or find out about things mentioned in the movies. The different movie locations can also be armchair traveling destinations. But once I noticed a pair of hands. Yes, a pair of RA hands and they belonged to the late actor James Coburn. That led to an article in a magazine which confirmed that the actor had RA and his convictions about alternative remedies. His hands gave him away, and in later movies that he appeared in, I noticed that the actor usually had his hands in his pockets or the camera will close up on his face. Or am I being overly sensitive? You decide. James Coburn died in 2002.
My hands gave me away too. Once I was holding on to the grab bar on the MRT and a lady was also holding on to it. I noticed her looking at my hands, and after a couple of minutes, she diplomatically asked if I had a medical problem. Turned out that she is a TCM practitioner, and gave me her card, mentioning that I could call her to talk. I took the card and thanked her. I guess she knows that I have a chronic illness, and it wasn't the time and place to talk about it at length. Another time was a bank teller when attending to me. She knew because her mother too has RA and hands like mine. I surmise that people who know about RA can spot the hands, others stare and wonder. I will take it in my stride, and I will answer their queries if I am asked.
A picture paints a thousand words, as the saying goes, and I can only imagine what goes through the mind of a pianist (or anyone who needs to use his hands effectively in his job or vocation) when he sees the pair of hands illustrating RA. Stare and wonder, or proceed to find out?
This is where RA Society can play a role in educating the public, isn't it?
Chin Yew Marn, Amy.
The Story of a Rheumatoid Arthritis Patient
My sickness started with some pain in the middle finger of my right hand. I attributed the pain to an injury by a car door a few months earlier and I just ignored it. Then one morning, the pain recurred suddenly whilst I was in bed. I could not get out of the bed. I needed someone to carry me out of bed and to send me to a doctor. On another occasion, the joint pain occurred when I turned the ignition key of the car parked at the school carpark. I found that I couldn't get out if the car. I had to enlist the help of a friend to get me out of the car.
I saw my doctor, a private practitioner, several times before I went to the hospital for a check up. When I was told that I was suffering from rheumatoid arthritis, my dream was shattered and my world collapsed. I remembered on one visit, when I was being examined by the doctor, there was a "cracking" sound in my neck. Midway during the examination, another doctor came into the examination room. The tactless doctor said to the first doctor: "That patient's neck is gone case". The minute I left the doctor's room, I just couldn't contain my tears and they came running down my cheeks. I went home and prayed and sought solace in God.
The first medication the doctor prescribed was aspirin. I felt this drug had great side effects on my heart. At the same time, I was persuaded to see a Chinese Sinseh. He administered acupuncture and provided herbal medicine in the form of round marbles. The medicine was like a wonder drug. It dispelled all pains and aches, except that my face became puffy and round. After taking the medicine for about eight months, I discovered that the drug contained steroid. I immediately stopped the herbal medicine. Unfortunately, there were withdrawal symptoms and I suffered pains and aches, and I couldn't move and walk.
I then consulted a rheumatoid arthritis specialist. The medicine she prescribed, methotrexate, did not help. It made my hands and arms very weak. When I told the doctor about the side effects, she refused to believe me. I had no choice but to go back to the hospital. I tried numerous types of pills and tablets before I struck on the right one, that is penicillamine. I had taken this drug for about twelve years before I had to stop taking it because of side effects. The next tablet I was prescribed was Sulfasalazine and I am still taking it after ten years.
I reckon my sickness was caused by strain and stress, especially marital stress, as well as personal worries. Later on, hatred and grievances aggravated the situation. Somehow I struggled on with my teaching profession. I even gave private tuition at home in order to save money for my three children's higher education.
Unfortunately after my retirement in 1992,one after another, my joints started to give me problems. I suffered tremendous pain each time. Within three years, I had replacement if both hips and knees. Three of the surgeries were done in Tan Tock Seng Hospital. After the surgery, my mobility was reduced. I was really down and depressed. For months I was house-bound. I started to withdraw into my shell. Very often I indulged in self-pity because I was incapable of doing anything and I had to depend on the maid to do things for me. Luckily, my children, sisters and relatives were very caring and concerned about me. They gave me moral support. They encouraged me to go out by buying a wheel-chair and equipments to make me exercise my limbs. They took turns to bring me to church, the theatre, park, seaside and even overseas. Slowly, I came out of my shell.
With advanced medical research, good doctors and surgeons, I believe a RA patient can live quite comfortably and control the pain with a smile.
Carol Ong.
Living with Rheumatoid Arthritis
On my 50th birthday some months ago, I took a moment to reflect on what have been, and what might have been. What might have been would be speculation, whilst what have been is living with rheumatoid arthritis for more than 25 years. It has been a difficult journey, but I've overcome some obstacles, and I am still taking this journey at my own pace, hopefully a comfortable one.
I contracted rheumatoid arthritis (RA) at a time when not much was known about the disease. It started with severe pain in my left knee each time I bent it. It got worse with swelling, and the right knee was affected too. Getting up in the morning was a chore, my legs were very stiff. Doctors just gave me pain killers, but the pain didn't go away. The logical step then was to turn to traditional medical cures, including acupuncture. It did bring relief. As the pain and stiffness was confined to my knees, I was able to work (clerical job) and carry on as normally as I could. As mysteriously as it hit me, the RA also disappeared for awhile. Although by now deformity of my left knee had gradually started, and it was bent inward.
Then the RA flared up again with a vengeance. This time I was so severely anemic that the doctor ordered me to be admitted to hospital immediately for blood transfusion. That led to several blood tests which finally gave a proper diagnosis to my condition. I was then referred to Tan Tock Seng Hospital to get proper treatment from a rheumatologist. During this time, I was also coping with my job, and it was a trying period. Getting to work each morning was tedious, and at the end of each day, I was completely exhausted. Fortunately, the doctor (from my employer's designated GP practice) treating me recommended that I needed rest, and I was given 6 months medical leave. By now the rheumatologist at TTSH had started my treatment to control the RA. I was put on myocrisin (gold) injections once a week and my condition gradually improved. At the end of the 6 month medical leave I was well enough to start work again. On hindsight, I realized that I would have been an easy target for depression to take hold of (especially when I was told that there is no cure for RA), had it not been for the tremendous support I had from my family. Being single and living alone, my brother and sister-in-law organized the household to accommodate my needs, at times rearranging schedules in order to ferry me to hospital for treatment. Friends gave emotional support and I willed myself not to give in to depression.
About one and a half years later, with the proper care and treatment given by my rheumatologist, I was very much better and the RA appeared to be under control. I was still on gold injections, although instead of weekly it was paced out to bi-weekly and then monthly. By this time I was not afraid of needles anymore! Although deformity in on my left knee had it bending inwards and thus making my left leg a crooked one, I was not in pain and was able to walk as normally as I could. I was by now in my 30s and surgery on my knee then was not an option. I was coping rather well with my job and maintained comfortable living conditions on my own.
It has always been my dream to see a bit of the world outside of Singapore, and I'm glad to say that I did realize that dream. After consulting with my doctor, who advised on a leisurely trip and not an exerting one, I went off on my first overseas trip to New Zealand. It was an exhilarating experience! That was in 1990, and from then on, I saved money and vacation leave and traveled once a year. The trick was to arrange travel schedules in between doctor's appointments and I become quite adept at that! Not to mention the prescription medication I have to pack as the first and most important item on my checklist. I was determined to at least visit a few of the countries that are on a list I made, and travel while I can. I did right up to 1997, when after a trip to the UK, I began to feel the RA flare coming on again.
I began to feel fatigue, lost my appetite, thus becoming weak and anemic. The pain in my left knee was getting worse and it was excruciating getting out of bed in the morning. I was practically dragging my left leg when I walked. It was time for surgery and my rheumatologist told me that I would have to prepare for both knees to be replaced. I was referred to an orthopedic surgeon who explained clearly what actually will be done and promised to straighten my crooked leg. Although I know very well that surgery was imminent, I was very apprehensive, but then I can't envisage myself dependent on a wheelchair! I want to walk independently. After arranging for the appropriate length of medical leave, I had my first operation in December 1998. I can still remember vividly what happened in the operating theatre on that day (I was awake as anesthetic was given only from waist down) but that's another story. When I was wheeled out to the recovery room, I saw my bandaged left leg straightened! I was so relieved, not to mention amazed that I didn't feel any pain at that moment. This same feeling prevailed when 3 days later; I could get out of bed and stood for the first time with my new knee. The next operation was in July 1999 and for the year 2000 I was coping very well with my new knees. What I did not expect was for my left hip to start aching and collapsed. Now its time for a new hip! It did seem that I was in for a mechanical overhaul. October 2001 was the left hip replacement surgery and August 2002 the right one. Thankfully each operation went well and as my surgeon said 'piece of cake'. By now I've also been termed 'bionic'!
I have been asked how I got through the 4 operations and still maintain a cheerful disposition.
My answers: strong family support was behind me propping me up. Grateful to have a skilful and caring surgeon to depend on. Friends were there for me to reach out to. So, for the first three operations I went back to work after each recovery period. When necessary I used a walking stick and even wore a knee brace. Colleagues helped out at work. I am an optimist and having a sense of humour helps. The walking stick I used was sometimes referred to as my 'third leg' which incidentally 'opened' doors too, when strangers would offer help when using escalators and taxi drivers will assist without being asked. Neighbours with whom I exchange greetings in the morning would offer words of comfort. I did not allow myself to be overwhelmed by pain and difficulties. When I lost my job just before my 4th operation (right hip), I took control and stay focused on the positive, which is to get a new hip and be able to walk independently. I am glad to say I have achieved that! Now that I have artificial hip and knee joints, I have to be mindful of what I can or cannot do with them. Stairs do not seem as imposing as before, although I do try to look for escalators! The height of my sofa seat is raised and a plastic chair for use in the shower. A pair of long handled kitchen tongs is extremely helpful when I need to pick things up from the floor.
Life isn't over if you have chronic RA. With the adjustments you need to make, life is just different. Manage RA closely with your doctors, they are there to help.
My favorite cliché: Look on the bright side of life. I'm doing just that!
I did not let the travel bug go away during the time when I had my joint-replacement surgeries. When I was well enough, I went on a short trip to Sydney, Australia earlier this year. Walking around Sydney Harbour was a breeze! Travel with metal joints come with a new set of procedures, but that's another story. I am looking forward to seeing the world bit by bit, but in the mean time, armchair travel will do just as well!
Chin Yew Marn (Ms)
A Patient's Perspective
In 1981, when I was in my teens, I was very athletic, more active than most boys in
my class. I played every kind of game. One day, during the Christmas holidays, I suffered
a bad sprain on my ankle and dislocated my hip which led me to see a doctor. The doctor
bandaged the injured leg but he didn’t seem to make a big deal out of it and
neither did I.
My condition got from bad to worse. My joints ached and lumps started to appear on my
joints and I lost most of my energy. My neck began to be painful and at first I thought
it was the position I slept in. The pain spread to my shoulders. The pain in my jaw became
so intense that I was unable to chew, I could only tolerate drinking soup and beverages.
My appetite decreased and subsequently, I lost about 5 kg. By the time I saw the doctor,
I had new pain in one knee and the opposite hip. There were days when I noticed my wrists
and hands becoming so stiff and painful and I had trouble using them. I had this bad
experience every day, the affected joints will be red, swollen, hot, painful and very
stiff usually in the morning, and gradually feeling much better during the day.
For several months, I didn’t talk to anyone about my illness. The hopefulness and
excitement for the future had gone out of me. I just could not concentrate on my
studies anymore. I could not cope alone. I was feeling very sick, in a lot of pain and
very depressed. I didn’t like my family and friends to see what I was going through, so
I made an effort to pretend that everything was find but that didn’t fool anyone. I
was obviously in terrible shape.
Even after I was diagnosed to have rheumatoid arthritis, I didn’t quite believe the
doctor because I thought arthritis affected only the elderly. The doctor showed no
concern and told me that I would have to learn to live with the disease. He told me
that he couldn’t hold out any hope for me for the future. He resented the questions I
asked for information about the disease. Soon I felt betrayed and dislike visiting
the clinic. Later, instead of getting any better I ended up bedridden for more than
2 years. I really didn’t care. My dad was usually the one making the decisions and
all he got from me was tears. I didn’t have any hope and was always thinking of suicide.
My mum was sympathetic and supportive. My dad was always seeking doctors and Chinese
physicians for advise and I had taken tons of medication and herbs. Delay in seeking the
right teatment had worsened my condition.
Subsequently, for some reasons, I got better. The inflammation and pain just went away for
a couple of years. But I was quite disabled. I was unable to walk or stand without
the help of the walking stick for years. My joints were deformed and my mobility was
restricted. I was walking with a terrible limp. Slowly I was physically and mentally
prepared to face the surrounding. I was unable to squat or lift my legs more than 6
inches above the ground. Without my mum’s help I was unable to do simple daily routines
like dressing, bathing, eating, getting into and out of a chair and bed. Slowly I
realised that with an extended stick and assisted apparatus I would do a lot of things on
my own. I had to get a seat cushion to increase its height and bought another mattress to
raise the bed. As for bathing, the washroom was installed with railings and a high
chair ready for my use.
The disease went into remission until late 1994 when I could feel that this time around,
the pain was more severe on my hip joints. There were some deformities and restriction
to my movement. I tire easily and was unable to walk more than an hour or two. Eventually,
in early 1995, I was referred to Tan Tock Seng Hospital for treatment. I was told
my disease had not been well controlled and both my hip joints were severely eroded.
Then my doctor suggested I consider a total hip replacement surgery and referred me
to an orthopaedic surgeon for further examination. I regret neglecting my illness for so
long. I was very shocked and fearful that the disease would limit my life and increase my
dependence on others again. I was very scared of going through the operation not only
once but twice within a year, a new situation in which I had limited knowledge. A joint
replacement provides an increase range of movements without pain and may last about 15
years or so, I was told.
Finally my right hip was operated on, in early April 1996 and I was discharged after
9 days in hospital. I was walking on clutches and mindful about putting too much body
weight on the operated leg. After recuperating at home for 2 months, I finally returned
to work. My second operation on the left hip was operated a few months ago and I am now
using a walking stick to support my left leg whose hip and thigh muscles are very weak.
Presently I am doing strengthening exercises daily. The two surgeries may bring relief
but they do not cure my conditon.
I am here today, sharing my experience, enjoying life within my limitations and looking
forward to what can be done rather than looking back. I am a happier and active person
today. Sharing with others can be one of the best ways of learning to cope and educate
oneself. I am currently a volunteer with the Rheumatoid Arthritis Society (S) which was
recently formed under the care of the Department of Rheumatology & Immunology, Tan Tock
Seng Hospital. This society is a non-profit voluntary support organisation for patients.
Lastly I welcome each and everyone of you to join as members.
Katherine Lim
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