Lupus Warrior's Story

I am a 32-year working female from India, and this is my Lupus Story -

Everything was going normal until one day every joint in my body started aching like anything. It was an evening of May 2018; I felt like some was breaking my bones from inside. It was 3 AM in the morning when I was rushed to the hospital and around 2 hours later my pain started getting mild as the doctor gave me high dose of pain killers.

My hospitalization

Upon further checkup, we got to know that the joint pain was because of Plural Effusion (fluid buildup in my lungs). the doctors had to remove the water from my lungs through pleural tap (Thoracentesis).
Since then, I was hospitalized for continuous 2 months due to continuous fever and fatigue. It was the time when I was also diagnosed with Typhoid as well. I was losing all my hair from my head.
There were tests after tests were done almost every day to check why my fever is not going, from TB test to bone marrow test, everything was done even I met an Oncologist as well but luckily it was not a cancer.

Endless tests

After almost one and a half month, I was asked to undergo Kidney Biopsy, when the doctors found that I have " Lupus Nephritis" an Autoimmune Disorder.
The term was new for me, but I remember doctors calling it a "chronic kidney disease" (CKD) and that it is something which cannot be cured ever so I will have to be on medication for my entire life.

I was shattered, thinking what have I done to deserve this. But later I realized that how lucky I am that it's just an infection which has been caused to my Kidneys, at least I they are working (Touchwood). Doctors told me to be careful when I am out in public and sun, since it's an auto immune disorder, I have to be more cautious as I have the high chances to get ill as compared to the normal people.

More symptoms

3 Years later in Sept 2022, I found a round shaped knot in my neck, I thought my cervical TB has flared up again (yes, I was diagnosed with Cervical TB in 2015). But luckily it was not a TB, It was just a knot which was removed through a small surgery/biopsy.

After few days I was diagnosed with impaired saccades and then doctor suggested to do one more test - Lumbar Puncture (Spinal Tap) where he took out the fluid from my spinal cord to know the reason for my impaired saccades.
According to the report I was diagnosed with CNS Lupus (Central Nervous System Lupus).
My world again sort of paused, and again I went to thinking is to why this was happening to me but anyways, this is called life, I guess.

Since then, I have been juggling between Nephrologist, Neurologist and Rheumatologist.

Struggling through the symptoms and side effects

It's been 6 years now and I am still surviving with both the conditions along with my impaired saccades which has affected my few of the daily routines like, I can no longer ride any vehicle on my own, I am always scared to cross the road when I am alone, difficult to follow directions, etc.

The medications also have their own side effects like high BP, fasten heartbeat, increase in body heat etc., Now I am used to this lifestyle now, and it's pretty normal I guess now to survive on medicines.

Just I make sure to be careful and take my life and illness seriously. I don't eat outside food, intake low sodium, low sugar, eat more leafy vegetables, exercise, yoga and dance and most importantly try to stay positive and stress free after all its only one life you get so live it fully and fearlessly :)

PS: Sorry for any kind of mistake in grammar or the language.