Living with lupus

A few weeks ago, on my fiftieth birthday, I woke up in the morning and quickly made a comeback of my life. Maybe everybody, who reaches this benchmark, does it. But in my case, it was a personal triumph like no other. Over the past two decades, my body has been beaten by two life-threatening diseases. In my thirties, it was bad cancer . And in 2001, while I thought I had conquered cancer through my last radiation, I learned that I had lupus – an irreversible and incurable autoimmune disease that attacks the body in various ways, including by cutting the organs. I did not know that morning, but my sisters and close friends had planned a surprise party that night. It was perhaps astonishing to them as to me that despite six or seven almost fatal emergencies and many hospital stays in recent years, I'm still around.

There is no known cure for lupus. According to Lupus Foundation of India about 5 million people in the world suffer from lupus and women are more likely to reach it ( Lady GaGa singers and Selena Gomez both suffer from lupus). In fact, last year, the Indian Institute of Medical Sciences demanded that lupus be included in the list of noncommunicable diseases of the Ministry of Health.

Managing Lupus

Living with lupus can be difficult. Or not, depending on your point of view. Thanks to advances in medicine, my quality of life has been affected but not killed. I avoid going to the movies or the mall for fear of catching something in a confined space. But that did not stop me from visiting friends for gettogethers. I can not eat fried and greasy foods or red meat. I am satisfied with my diet (mainly) based on fish, vegetables and fruits. More importantly, lupus requires you to listen to your body – and your quality of life, like mine, depends to a large extent on your alertness to triggers and your ability to act accordingly. For me, the first sign is a sharp increase in blood pressure. As soon as my head or eyes start to feel heavy and I feel tingling at the back of my head, I check my blood pressure and take the necessary medications. If I feel nauseous or start to vomit, that's another sign. Now, I often have the ability to prevent accidents by adjusting my senses to possible "flare-ups" (as one calls a lupus tip) and by acting quickly.

Continue the fight

In 2001, I suddenly felt an excruciating pain crossing my joints, followed by a mild fever. At first I thought it was a virus and I took paracetamol tablets. But when the fever refused to go there, I had blood tests done and doctors found that my CSR rates – one of the markers of autoimmune disease – were out of control.

Another symptom quickly began to appear: big red patches on my skin. When lupus starts closing your organs, you begin to feel flare-ups. And the drugs also have their side effects. In 2012 – during the first of many incidents, I had kidney failure, high blood pressure and was at the threshold of a multi-organ failure. My nephrologist Rajesh Kumar and my general practitioner Naresh Shetty literally got me out of the mug of death. My kidneys, however, have never recovered; Since then, I have been on dialysis and almost continuously since 2016.

Lupus m & # 39; s cost my job, as well as the public relations business that I had created with a partner. A few years after the virus was detected, the doctors told me to withdraw and work less, and I finally had to give up. Lupus also broke the last nail in the coffin of my marriage, which was already deteriorating. There were days when I suffered so much, or I was so depressed, that I could not get out of bed, I had to continue, for my sons, Viraj and Dhruv. I had to be strong for them, so some days, after putting them to bed, I went into the bathroom and cried. The other days they were sitting outside the intensive care unit, while I was fighting for my life inside. I was determined to be with them and to see them go through difficult years. Now they have grown up and settled in their careers. But what is good is that taking care of me has transformed Dhruv and Viraj into sensitive, protective and caring young men. In fact, my family has helped.

Find the inner strength

I believe that the key to managing any debilitating chronic disease is the inner strength. I have never let cancer, lupus or even kidney failure possess me. In fact, in the days following my dialysis, I feel so energetic, happy and positive that sometimes my sisters have to hold me back. The disease disappears if you fight to be normal. Your body begins to accept that, if your mind did it, and "give in" to be normal. Indeed, the only time I almost gave up was in 2016. One night, my blood sugar started to go down and I had six or seven hypoglycemia attacks in a few hours. In the morning, I was paralyzed from the neck to the feet. I was transported to the hospital, where I developed a good coughing fit. The pain was so intense that I remember, between two breathing aspirations, asking my brother-in-law Indranil to tell the doctors to let me go.

Of course not. And my family and my friends either. There is not one place of worship they have ever visited, nor one God whom they have not prayed for me. I also have two obstinate doctors who have taken up the challenge of staying with me. With so many people rooted for me, how can I possibly lose?
– As told to Labonita Ghosh