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Submitted by PatientsEngage on 11 October 2017

There is a lot to learn from the life story of Jacqueline Colaco, 68, a National Hockey Champion and highly successful banker, who was struck by Rheumatoid Arthritis at age 36. But she bravely fought the disease with surgeries, medications and a positive winning-over-whining approach. Today, she is a beacon of hope and inspiration to fellow sufferers.

She was what every girl aspires to be. A school Head Girl, National Champion of Women’s Hockey, distinction in BCom in college, a highly successful banking career, choral singer, occasional model and vivacious personality. For 36-year-old Jacqueline Colaco, everything was going perfect. She had a prestigious overseas posting with Bank of Baroda at their New York branch and was in top form.

Till one day in 1986, she began feeling pain and inflammation under her feet and toes. She presumed it was her body reacting to the cold weather, and ignored it. But when it became unbearable, she consulted a local doctor and was diagnosed with aggressive Rheumatoid Arthritis (RA).

Jacqueline’s (or Jackie as she is better known) RA progressed rapidly, rendering her weak and stiff. Her joints weakened. Her limbs were no longer able to perform normally. “I went through a period of hopelessness. I was inclined to clutch at any straw that promised some relief, but that left me more confused and more depressed too. Towards the end of my term, I requested that I be sent back to India where the climate was warmer and I had family to give me support,” she says.

Jackie returned to Bangalore at Christmas time 1987, and tried indigenous treatments in a warmer climate, but over a period of time, it began to sink in that she had to live with this disease that was slowly taking away her mobility, ability and independence. “I knew the disease to be lifelong, extremely painful, degenerative and debilitating, but not terminal. The chances were that I could be bedridden or crippled, and to date no cure has been found.”

In 1995, she bid adieu to her 25-year-long banking career, fifteen years ahead of retirement. Repeated surgeries, hospitalization, heavy medication, pain and discomfort became part of her life. Yet, Jackie refused to let these problems dampen her spirit. She started a support organization, Arthritis Foundation (India), to reach out to other arthritis sufferers. For the last 20 years, she has been creating awareness about arthritis, treatment options, coping mechanisms and even extending financial support to needy patients.

With regular physiotherapy and a balanced lifestyle she keeps fairly well and active enough to be involved with people on a social basis. Her recent focus has broadened to the field of disability awareness and the glaring need of the disabled in our country to have an improved quality of life.

Jackie has participated in several wheelchair marathons, organized and led the Global Walk for India’s Missing Girls in Bangalore in her wheelchair, campaigned against female foeticide/infanticide, organized concerts and participated in book clubs. She began writing motivational pieces for newspapers and magazines and also published her autobiography, Just me, Jacqueline, On My Way.

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Jackie was greatly inspired by her mother who was also afflicted with RA. “My mother was a shining example of this. She kept herself going the best she could upto age eighty six with thirty five years of RA behind her, and twenty five of them mostly housebound.”

“Although arthritis has forced me to give up many of my favourite pursuits like going for walks, swimming and sports, and travelling afar, I look back on the many experiences I’ve had in these areas, and remain ever grateful for them,” she says.

“All said and done, I count myself as very fortunate in the support I received from family and friends. It’s only a positive attitude to take illness in your stride that can make life meaningful and change you from ‘Whiner to Winner’!” she maintains.

Interview with Jacqueline Colaco

There is no way one can prevent or cure RA. But is there any way one can stop or slow down its progression?

As soon as the first symptoms of stiffness and swelling appear consult a rheumatologist and undergo related blood tests. If positive, discuss treatment options available depending on severity of initial symptoms, relate to side effects, keeping in mind age and economic responsibility, family responsibility of person and decide accordingly. Person needs rest coupled with mobility, lack of avoidable stress, family understanding, support and medical treatment. Movement of joints through pain is essential - enabled with painkiller, etc. and external gel/hot pack. Also, a rational diet that suits the individual/ sufficient sleep/proper body weight is essential. So are regular check-ups and blood monitoring/other prescribed tests essential under doc’s supervision and X-rays if required.

What would be some of the coping strategies for rheumatoid arthritis?

When in pain do not strain. Use a tried and tested school of medication and give it a chance to work under guidance and supervision of a qualified medical practitioner with all it prescribes with regard to medication and lifestyle including diet if any, exercise, yoga, physiotherapy, spiritual exercises as per individual choice. Forget what you could do and concentrate on what you still can even if to a lesser extent. You’ll find tons and newer interests too! You are the best judge of your condition but don’t indulge in self pity. Look beyond yourself to a support group.

As a final recourse, when recommended, joint replacement surgeries restore an excellently functional degree of mobility to degenerated joints and, if managed according to prescribed protocol, serve long and faithfully. Post operation physiotherapy is very important. No pain no gain to restore range of motion. I have had 4 replacement surgeries. All doing well and I can walk independently on a flat surface. Besides, I’ve undergone hysterectomy and removal of gangrenous intestines. Life and death surgery, but here am I.

Ask your doctor your questions and doubts especially. With regard to minimising and managing side effects, check on alternative medicines. Plenty in RA.

What are some of things you did to manage chronic pain and depression?

I continued to work for 12 years after illness hit me despite the struggles of being in an executive position in a bank. I co-founded Arthritis Foundation (India). Thereafter, I moved into the wider disability arena where much needs to be fulfilled for PWDs (People with Disabilities) to be mainstreamed into Indian society. I wrote my story at age 60, I wrote in the newspapers and in magazines. I still attended parties, picnics and have visitors over, emphasizing a ‘take me as I am’ and ‘self-help from them’ aspect so I was unstressed. I interacted on social media sites. I’ve organized concerts with friends performing for my charitable causes.

When I feel down and out I lie low, but not for long. Life has to be lived! A hot pack is a great enlivener when it gets chilly in Bengaluru. So is a hot bath! Keeping good cheer and humour going among caregivers is important too. They are your lifeline to enabling much of what you are able to tackle. Weight control, proper diet and 9pm-6am shut off time is a must for me. Spot dancing or running is essential daily as are prayer, music and reading. A bit of news on TV. A film off and on DVD. I assist at a soup kitchen Saturdays now for homeless hungry. Fight those blue moods. They’ll fly away!

It has been nearly a decade since your autobiography was published. How have you taken the RA crusade forward since then?

I resigned from AF(I) in 2011. On my own I meet individually or write to any interested enquirers to share my experiences; my book has gone far and wide, almost 800 copies I guess, the film ‘That’s What Friends are For’ too, and with my foray into the disability sector as a trustee at premier organizations like ADD (Action on Disability and Development) and APD (Association of People with Disability) at Bengaluru for almost two decades.

What is a typical day like for you as a RA patient?

At its peak, I’d suffer a pretty sleepless night despite the NSAIDs (nonsteroidal anti-inflammatory drugs) for pain, sometimes moan helplessly and cringe at the thought of attending work the following morning. This more so in the early days at New York when I lived on my own, travelled a fair distance to work and had a long day to deal with, later home to fend for by myself as well. Back in India, there was family and caregivers to lend much love and support through hard days.

Once I quit I continued to drive a Maruti automatic specially made for handicapped till 1999 when my hands began to resist. Being fairly housebound thereafter, I began to write, I got a computer and slowly learned the ropes. Would rest some in the afternoon. I love my garden and have 100 potted plants. Vicarious TLC (tender, loving care)! I manage my home and entertain somewhat. I read two newspapers, belong to a book club. The day flies. I do some spiritual reading early in the morning, exercise outdoors, chat cum listen awhile with the oldies at the senior city home where I live. By 7pm I shut shop, return to read, some phone chats, supper and bed at 9! Sweet dreams thereafter.

I am on a weekly dose of methotrexate now. I developed epilepsy some years ago. On the wane now but I still am on medication. Recently two clots were found in my brain which fortunately dissolved with statins but now I’m on aspirin. The minimum of medicines. A daily dose of sunlight and sunshine in my attitude. No NSAIDs as I feel my RA has gone into remission. The power of a positive mind!

Winning over whining? Remaining busy yet resting? A people’s person yet alone? Enjoying revelling in the ordinary pursuits of my home!

 

Recommended: How to stay active at home with Arthritis

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