Usha Ravi Eppaturi, 49 has been living with Lupus for a long time and it took a while for her diagnosis. She talks about Lupus as well as other challenges with which she lives but remains undaunted.
Please tell us a bit about your condition
Identified with auto immune condition Lupus, with a relapse of AVN (Avascular Necrosis) which has left me with 3 artificial implants i.e. both my hip joints and right shoulder joint.
When were you diagnosed?
Diagnosed in September 1986 when I was 16 years old
What were the early symptoms?
Used to get intermittent very high fever during the day and night at odd intervals. Ulcer in the mouth made eating very difficult
Please describe your experience of managing the condition?
Managing Lupus has not been easy, it’s over the last 2 decades with support from my family and friends that I have learnt to discipline and ensure a routine which involves swimming and pushing myself to do all the house work. The more active I am during the day including my days when I am unwell, in pain or feeling low, ensures I keep going and have a positive outlook towards life.
What were your main challenges?
Lupus was an unknown condition in 1986, due to lack of awareness, and diagnosis was possible by only a few selected medical facilities in the country., One of the doctors accidently diagnosed my Lupus condition and was willing to treat me.
I do regret missing out on my teenage days as I spent more days in hospitals than at home, or going to college.
Steroid side effects had put me in an odd social position as I started putting on a lot of weight, lost hair, eyes became squint. The social and family stigma started impacting my morale, self-esteem and confidence.
Due to low immunity, I was twice diagnosed with herpes, I would easily catch flu, common cold and cough whenever I visited any crowded place or social gathering.
Till date I have to regularly visit hospitals for minor and major surgeries such as new joints, replacement of existing joints etc.
Every day my body presents me with a new challenge, my artificial joints hold me back and I have constrained body movements. On certain days, I need assistance to get dressed. I am advised against walking on hard surfaces for a long time such as on concrete / tiled surfaces. I have to take extra care to maintain my health.
What medications are you on? Were there any side-effects of the medicines?
Steroids, anti-inflammatory drugs, thyroid medication, calcium and multi-vitamin supplements in addition to my diabetic medication.
All medicines have some or other side effects and I have to be regularly in touch with my doctors and rheumatologist to maintain and control my lupus condition.
What were some of the challenges you faced and what is your advice to patients who face similar challenges?
I cannot plan my day, I can fall sick with any ailment suddenly, pain is a part of my life. I need to self-motivate and push myself to think beyond the challenges to live life to the fullest.
My advise to patients is always believe in your own self, you are your best friend, motivator and should focus on living a good life and learn to ignore the society stigma, noise and nuisance. You are blessed and better placed than many others who have more serious aliments. Look forward to the good days.
What kind of specialists do you consult and how often?
I consult a rheumatologist and a diabetes specialist every 3 months.
Have you had to make some changes to your lifestyle because of your condition?
I have become very careful of what and when I eat, how and where I go, I ensure I follow my exercise routine to stay fit and healthy, take my medication on time, surround myself with friends and family who care for me and motivate me.
Have you tried complementary medicine or therapies, like homeopathy or yoga?
Tried both homeopathy and ayurvedic medication without any success. Due to my artificial joints I have given yoga a pass.
Has it been difficult emotionally to cope with your condition?
Life has never been the same since I was diagnosed with Lupus in 1986. I have been emotionally drained due to regular social and family backlashes due to my appearance and ill health. My parents also had to bear the huge and never ending expenses towards my treatment, rehabilitation and reinstatement within the society, which left me emotionally challenged. All the love, affection, prayers and care of my parents and brother has helped me to overcome my emotional challenges and made me strong woman today.
How has your family supported you?
They have been my pillars of strength and support throughout my fight with lupus. I am very very lucky to have such positive and loving parents who have selflessly taken care of me. They have prayed for me in almost every popular religious place for my good health and well-being. My elder brother too has sacrificed his growing up years to attend and take care of me.
Is there any personal anecdote that you would like to share with us?
Life always gives all of us a second chance in life …
When I was 16 years, I was well known as a sport loving child and a dancer who suddenly fell very sick. Life changed for me. Instead of spending time on the playground and dance floor, I was now regularly visiting different doctors, endless days turning into months at hospitals to get a proper diagnosis of why was I so sick. Accidently one of the progressive doctors shared his diagnosis that I have an auto immune condition called Lupus…
I was slowly exposed of the serious disorder and realised I was on steroids. The side effects were visible with increased weight, loss of hair and low immunity. My resolve ensured I went to the board examination halls all covered up in an ambulance and came back to the hospital while I had herpes. I am proud to share I passed with flying colours.
As I got better, life again took a turn, as I was married while I was still a teenager. I did share my medical condition and lupus with my fiancé before the marriage. The next 10 years were the most stressful, full of mental and physical abuse together with my husband having numerous extra marital affairs. To get me out of his life, he even conspired to kill me and planned with a doctor to inject over 6000 mg of steroids in my body.
God had other plans for me, he sent my brother who took me away from the hospital and got me back home in the other city. Again, I spent numerous nights in rehabilitation asking myself “WHY ME”. One night I got my answer, “You are my special child, you are a fighter and you are a woman of substance”
My joints started getting impacted due to necrosis, first my right hip joints had to replaced. My father somehow managed the cost of the surgery in Mumbai Hospital. While I was recovering, I received my divorce papers. While fighting my case I had to also get my left hip joint replaced and learnt to walk with a help of walker. Today I confidently walk without any support.
God has his own benevolent ways to take care of his special children. Ravi entered my life, I found love again, he accepted me as I am with my medical and lupus condition. We soon got married. Over the last 14 years he has been supportive, loving and understanding. He has been with me during major surgeries to replace my right hip joint again and right shoulder joint. My tryst with lupus continues, I also got diagnosed with diabetes and thyroid over the years.
I keep going on with life smiling with my challenges as am reassured of having Ravi by my side.
Stay positive, believe in yourself, you will never know what GOD has planned for you.. Let the magic of living a good life continue.
