Sometimes our lives have to be completely shaken up, changed, and re-arranged to make us what we’re meant to be. And, that’s what my struggle with LUPUS taught me – it made me STRONGER!
How it all started?
My husband & I started our journey together in 2008. As a happy couple, our life revolved around watching movies, going out with friends and having parties. We always felt blessed as we were doing great in our careers and living a happy life.
After 2 years of our marriage, smartphones entered into our lives. We started spending our weekends on the couch and playing games on the phone. On one such weekend, I felt immense pain in my finger joints while playing on the phone. I thought it was because of continuously playing and hence, ignored it.
Over the next few days, I started experiencing this pain in my finger joints early morning, and even while driving or picking up small things.
And, this was not just pain, I also noticed swelling in my fingers. I tried ignoring it thinking maybe it’s the weather change or age factor as I was turning 25. But, things just kept adding up – swelled gums, fatigue, irritation.
In the last 25 years, I had hardly visited any doctors as I never felt the need. My mom always used to call me her “Strongest bachcha (kid)”. I hated taking medicines, but when things just kept getting worse we decided it was time to visit the doctor.
We visited Neuro Physician as we thought it might be related to nerves. After hearing the symptoms, he asked us to get some tests done. One of the tests came out positive and the doctor told us that my RA factor is high and I have Rheumatoid Arthritis.
I had never heard about RA in my life. It came as a shock to me – Arthritis at such a young age! That’s when the doctor told us that it’s an autoimmune disorder that primarily affects smaller joints and happens in child-bearing age.
What is an auto-immune disorder?
Our immune system is a critical part of the body. Normally, this system protects us from any germs, bacteria or viruses to keep us healthy. When it senses any dangerous element in the body, it sends out an army of proteins called auto-antibodies to fight them.
But when you are suffering from an autoimmune disease, your immune system itself starts attacking your body. It treats healthy body cells as aliens and thus starts producing auto=antibodies to attack the healthy cells. So in short, your own body starts fighting and killing itself.
After hearing about RA, I was really scared!
We asked the doctor how long it will take to be cured and why did this ailment happen to me? He just replied that it can be triggered due to many reasons and I’ll have to be on medication for the rest of my life. Additionally, I’ll have to make sure I’m leading a healthy lifestyle as stress can make it worse. I was devastated. Why did this happen to me? What had I done wrong? All these questions kept hounding me for days.
I started taking the medication but somehow instead of getting better, the things started getting worse. The medicines were so strong that I felt drowsy and tired all the time. I started losing weight and things were not going right at all.
We visited the doctor twice in the next few days and after seeing my condition he referred us to a Rheumatologist. Ah!! One more new term in my life. We visited the new doctor and narrated the whole story.
After hearing patiently for over 20 minutes and going through all my medical reports, he looked at me and said, “You have Lupus”.
I was confused. I said, “No doctor I have been diagnosed with RA”. But as per him, the redness on my face and the rashes around my hands were the clear indicators of Lupus. Before I could ask what Lupus is, he asked if I had issues going out in the Sun. I said, of course, I do just like everybody else. He said that everybody doesn’t have an issue going out in the Sun! This is known as photosensitivity. This came as a shock to me, and I remembered that since my childhood, I used to hate going out even in the mildest sun because I used to get rashes and used to get drained & tired.
To confirm his diagnosis of LUPUS, the doctor asked us to take another test. We got the test done and guess what – it was negative. We were so happy!
But, that happiness didn’t last too long. Unlike other genetic diseases, lupus is linked to multiple genetic variants and thus is very difficult to detect and treat. But the symptoms persisted, and hence the doctor asked us to get the test done again.
This time it came +ve for LUPUS.
What surprised me is that 90% of LUPUS patients are female in the age of 15-45. It affects 8-11 patients out of every one lakh in India and, still, we know so less about this disease. The funny part of this disease is – it acts differently for different people and even the medication and treatment are specific to every individual.
For the people who are not aware of LUPUS: SLE (Systemic Lupus Erythematosus) is an autoimmune disease where your immune system mistakenly attacks your own healthy tissues. This can affect your kidneys, skin, joints, heart, lungs, brain or any other critical organ. Therefore, timely medication is very essential otherwise your own immune system can take your life.
My struggle with LUPUS
I was put on steroids for life. Inspite of the medication, there were mornings when my joints would be completely stiff, and the pain would be unbearable. On other days, I would have rashes all over my skin.
Sun became my biggest enemy and I was told to apply sunscreen at all times. The tiniest bit of stress would trigger reactions all over my body. The worst thing was that I started losing my hair. I used to love my hair but the doctor said if you don’t want to see them fall daily, chop them as short as you could. So I did. I cut my beautiful long hair, which I had not even touched once in the last 8 years.
Over time, things started getting stable and the medication started showing its positive effects. My body accepted the medicines and my mind accepted the fact that this was my life – dependency on steroids and a healthy lifestyle with minimal stress. Now, Lupus was part of me and we needed to make sure that it does not reach its fatal state.
It took me some time, but I made sure that I don’t let the disease win over me. And, the days when I wanted to give up, my husband gave me all the strength that I needed to fight against this battle.
My win over LUPUS
When we planned to start a family, we knew it was going to be tough. But, thankfully with God’s grace, we were blessed with an angel daughter after 36 super critical weeks.
Lupus is a rare disease and I’m lucky enough to have been diagnosed with it early on in my life before it could cause fatal harm to any of my organs. It made me realize how short our lives could be and pushed me to appreciate it even more than ever.
And, hence, I’ve made a decision to change my career and get out of a typical 10-12 hours job. I would rather live and enjoy my life with the two people who care about me the most – my husband and my daughter. And of course, I will continue and build on my biggest passion – dancing (that’s the story for another day).
Through my story, I want to reach out and make people on IForHer community aware of this disease and the challenges it brings. If you think any of your friends or relatives might be suffering from this disease, do get them treated by good doctors and extend your emotional support to them. And most importantly, make sure they keep their hopes up and live a healthy and enjoyable life!
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