My Silver Jubilee with LUPUS

Hi I am Deepa Harikumar, a lupus fighter since 1994, but the disease got diagnosed in 2009. It took so much time to get diagnosed as during those days people were not aware of such a disease (SLE / Lupus). 

I was in 10^th standard when the symptoms started i.e. high fever, joint pains, and fatigue. As the symptoms developed my blood count came down, I had bald patches on scalp. These led to more fear and depression, as we thought it is some kind of Cancer. I was admitted in hospital for almost 2 months.

Later with blood transfusion and antibiotic medications (Prednisone, iron and vitamin supplements) my condition started to improve and gradually the medication was reduced and discontinued as per doctor’s instructions. I was living a normal happy life with many happy moments to share such as successful completion of schooling, then graduation and then a PGDPM. 

Later got chance to work with good BPO Companies, as Lead Quality, Quality In charge, AM Quality etc.. In 2003, while at work, when I was a bit stressed, I felt unconscious and had an episode of seizure. Later I had seizure once at home and also at office, due to which I had to discontinue my job.

History before diagnosis (1994 – 2012)

High fever, joint pains, fatigue continuously for 2 weeks. Gradually other symptoms developed such as hair loss, memory loss, vomiting sensations etc. Diagnostic tests were done. Hemoglobin count reduced to3.6g/dl before admitting to Sir Ganga Ram Hospital, Delhi. After undergoing the tests it again reduced to 1.8g/dl and had to go for blood transfusion (A-ve Blood Group).

I was on Prednisone, other Iron and Vitamin Tablets for more than 6 years. The medicines were slowly stopped after the monthly blood tests. I am very grateful to my parents, teachers, batch mates who all have very much supported to complete my schooling, then graduation and then PGDPM.

In 2003, I had some episodes of seizure and pleural effusion, due to which I got admitted to RML Hospital New Delhi. The diagnosis were – RHD, MVP with Mild MR, Recurrent Cerebral Infarction. I was on steroids and Antibiotics like – Tegrital, Kaypen penicillin (it was discontinued in 2006) and Warfarin (it was replaced by Acitrom Tablets after a month due to some side effects). 

Marriage got delayed due to my health issues. In 2007, when I was 28 years old, I got married and was living a normal life. After 3-4 months of marriage I got a job in Bangalore. Due to work pressure and shift timings, I had some episodes of seizure at home and also at workplace, due to which I had to discontinue my job.

In 2009, I got pregnant and for further consultation I went to St John’s Hospital, Bangalore were I was asked to discontinue the pregnancy due to health issues. I was admitted there and diagnosis stated – APLA +ve, ANA +ve. Same medication continued (Tegrital and Acitrom Tablets).

Again in 2012, while I was pregnant I had fever, abdominal pain, rashes all over body and vomiting. I got admitted to Fortis Hospital,Bangalore. I had to go for second abortion due to the risks involved for mother and fetus development. There, after the tests (USG, Doppler, EEG) they confirmed Lupus Hepatitis / Auto immune Hepatitis.

After Diagonisis

In Fortis Hospital, Bangalore the diagnosis stated 1. Auto immune hepatitis, 2.APLA, 3.  Seizure disorder (Abnormal EEG) 4. High SGOT/SGPT (2088/2006). I was on steroids and Antibiotics like – Azoran, Prednisone, Levipil, Acitrom. I continued these medicines for 1-1.5 years and slowly got it tapered and stopped the same. I was not allowed to go anywhere or travel without being accompanied by anyone due to blank episodes or seizure issues.

As I was very much concerned about having a healthy baby and was undergoing a depression state, my family members suggested to go for ayurvedic treatment. I followed many food restrictions (still following), meditation and the medications provided, which later on helped me to have a princess in my life in the year 2015 ( after 8 years of marriage) . I continued with the Ayurvedic medication. It helped very much to stop the seizure episodes but still I had some blank episodes, memory loss, fatigue etc.

Present condition

In 2017 my Husband got a transfer to Ernakulam. Due to the climate and lifestyle changes (no job, financial issues, family issues etc..) there was increase in anxiety, depression which further led to blank episodes. I was afraid to apply for any job due to health issues. Hence to divert my mind I tried blogging and also small investments into stock market.

After doing some research on the Doctors related to the treatment of SLE / Lupus, by the end of the year 2017, we came to know about Dr. Padmanabha Shenoy (CARE, Kochi) best Rheumatologist I have ever met, under whom I started my treatment from Jan 2018 (treatment still continued). At present I am taking Ayurvedic medicines as well as Allopathic medicines (HCQs, Epilive, Ecospirin, Acitrom, Vitamin D tablets). Every month I have to experience some or the other health issues or flare ups. Once I feel, I am unable to tolerate the issue or further it will affect any of my organs, I won’t ignore the issue rather get some consultation from any of the Doctors available in or around who have knowledge about SLE.

I am lucky to be part of SLE / Lupus Whatsapp group which has now started a registered Lupus Trust, which further helps to create awareness, spread knowledge, provide any sort of psychological or monetary help to the members.

As a Lupus Warrior I would like to suggest the following - 

Try to lead a simple life with the Lupus challenge. There may be many ups and downs, different types of pain, many instances which may have negative effect on you physically or mentally. Don't give up, listen to your body. The best thing to do is be positive, don't feel down or depressed and always be open to discover the whole new world of possibilities.” 

I always tried to stay strong and positive. SLE can effect any organ in our body. We can’t stop it, but it can’t change our attitude or our faith, so be determined to stay strong and fight until we can.”

Try maximum to spread the awareness regarding the signs and symptoms of Lupus. The people who already have Lupus, always get regular medical tests, take medicines on time, get more sleep, eat right and stay fit.

Also Read:-

Depression(Part 1) - The common cold of mental disorders

Depression(Part 2) - The common cold of mental disorders

Feel Young - Keep yourself physically and mentally fit

Anxiety- Human emotion or Mental disorder

Phobia- A type of anxiety disorder

Any feedback or suggestions, please feel free to Comment.