In 1986, at age forty-nine, Lucia (not her real name) was diagnosed with rheumatoid arthritis, a progressive debilitating disease for which there is no cure. What began as a simple pain in her wrist, led to blood tests and these frightening words of confirmation from her doctor: "Okay you have arthritis, that is what it is and it will shorten your life span by about 15 years." How does any individual deal with such a prognosis? "I did not think I would get better but never, never knew all it entailed. You learn to look at quality rather than quantity of life, and go on."
There are many different types of arthritis. Lucia's rheumatoid arthritis causes inflammation in the lining of the joints and/or other internal organs. This inflammation separates RA from other forms, such as, osteoarthritis, also a part of Lucia's ailment which affects the bone and can lead to deformity.
The cause of this degenerative disease is not yet known. What is known is that the gene that influences the likelihood or a tendency to have RA is one of the genes that controls the function of the immune system. Scientists currently are doing research to increase our understanding of genetic and environmental factors that can influence the development of RA. While the tendency to develop RA can be hereditary, it is not inherited in the usual sense, that is, it is not passed directly from parents to children.
Lucia has educated herself thoroughly on the disease with which she must live daily. "You take every new medication that is discovered, and since your health care provider is aware that they cannot cure your disease, they must be more of a calm temperament giving solace and showing patience; that is all they could do and bring you each new drug that comes on the market."
Over the 14 year period since diagnosis, Lucia has learned many things. How to live with pain on a daily basis. That she is on medication for life: the anti-inflammatory drug which quells the inflammatory process and alleviates the pain in the joints, can play havoc with your stomach. Methrotrexate inhibits the progress of the disease. The dreaded steroids, which have ended many an athlete's career, is the wonder drug which is widely used especially for arthritis, but with devastating side effects. Not to mention the cross-section of vitamins she must take to get through the day.
"The steroids, it so happens are the cheapest and most effective, but can cause diabetes, high blood pressure, and even more difficult to deal with are the visible side-effects which change your entire physical appearance. It affects your life adversely and causes very poor self image. I never look in a mirror again."
Prolonged use of steroids has caused steroid-dependency, but without it Lucia just does not feel well.
Many of the things non-arthritic persons take for granted become difficult to achieve. Some mornings Lucia must move her face from side to side to brush her teeth: "The elbow cannot bend to allow movement of the toothbrush. I walk with my head down because I have to watch everywhere I put my foot, I cannot even step on a pebble, I will fall. Climbing on a chair or ladder to get something out of the cupboard is a no no, so to is driving a car. I have learned to cope in the kitchen by making changes, for instance to peel a dasheen, I cut it in smaller parts first."
Persistent inflammation can lead to destruction of nearby cartilage, bone, tendons and ligaments and the joints are no longer able to support body weight, so that Lucia has already had one knee replacement, which is "really, really wonderful but then right after my elbow went and the other knee started to bother me." How much surgery can an individual stand and what about the high costs involved.
Although it has not been scientifically proven, Lucia finds there are some foods that aggravate her condition, such as, curry, sugar and anything with preservatives.
To deal with all that arthritis entails, she has had to internalise, depend on family and spirituality "as the disease changes your personality. I have become quieter as living with the pain I tend to stay still. You withdraw. You cannot dance anymore, you go out and you have to sit down, your social life is down to nothing. And you are faced with your partner who could still dance. You learn how important your support system is or life can be one hundred times more miserable."
She stresses for her fellow arthritic sufferers that family is all important. "They need to understand what the disease is about because you look well, but you do not ever feel well." Lucia has at times felt to give up. "When I have bad flare ups, I have my crying bouts but above all I realise that I have lots to be very thankful for, especially that there is the financial wherewithal which is so very important to buy the medicine, as I think of other people out there who cannot buy the medicine and can never get joint replacement. What you have to tell yourself is there are other people with other illnesses worst than mine."
What is a flare-up like and what causes them? Something would aggravate the disease, whether emotional, a flu virus, overwork or the ingestion of food or drug to which you may be allergic. "A bad flare- up brings nausea, vomitting, fever, joint pains, it is totally crippling you have to be under doctor's supervision. The thing is you just do not know what will cause one or when it will happen. When I have a flare there are times they have to lift me bodily, it is terrible, and you do not know when to expect them."
Then there is the question of upping the steroids to six times the normal dosage during a flare, "and you know what it is doing with your face and body, and you have to bring it down gradually over a period of days, it is dangerous to stop them suddenly."
"And although it is recommended that you stay active, there can be no vigorous exercise so you try to exercise when you are not in a flare, the main thing is to learn to listen and respond to your body's signals, such as sitting in higher chairs, lying on a very firm bed with board preferably. There is no more vanity of wearing high heels although the practical shoes, unfortunately, are unattractive."
The roller-coaster of deterioration with Rheumatoid Arthritis goes on and on as the disease can affect the back, lungs, heart and connective tissue organs which make climbing stairs or speaking for lengthy periods cause breathlessness. "The doorbell rings and you just can't get up to go to the door. There are plenty limitations, but my grandchildren and family life have become very, very important. And my friends are very, very close and supportive.
Being mostly sedentary now, Lucia has lots of time for thought and she is aggravated at the lack of medical insurance for those over 65 years "and that is when things start going apart. There is no quality, health care unless you have money in this country. My medicines cost about $50 a day, not to mention the joint which cost $50,000 and hydrotherapy (water aerobics) could cost $80 per month."
Lucia has tried every method of treatment, including very costly alternative medicine. "In Miami I did tests for allergies through strands of hair and was told I was allergic to 102 things. I exchanged the prescribed medicine for the costly herbal medicines. This caused a flare so I decided to stay with the conventional medicine."
She is a founder member of the Supporters of Physical Medicine and Rehabilitation (SOPMAR), which seeks to support the Physical Unit and Rehab Centre at St James, and the less fortunate in our society who are patients at the unit, but SOPMAR is floundering because of a lack of membership. "However" says this very brave woman "if I can help one body a year to get some quality of life, it's okay because you do not know it unless you walk the road."
Lucia's words of advice to fellow arthritis sufferers: "Find some hobby that occupies your time and that you enjoy, even if you are not ambulatory."