Never say Die Spirit!

Neetu wadhwa (Scleroderma Warrior)

Co-founder, sclerodermaIndia

In Jan 2006, i saw my fingers turning blue in extreme cold, but i ignored them. And during the same year, i started having bronchitis, but did not think about it much as i have family history of Asthma. My doctor prescribed an inhaler and i went on with my life.

I shifted cities for Job in Nov 2006 and i started having dry cough daily. Immediately i started Homeopathic medicines for the same but relief was sort lived. I also started having stomach issues like pain in stomach or indigestion issues. Went from doctor to doctor but even after ultrasound i was told it’s normal gastric problem and nothing to worry about.

I then consulted Senior Doctors at Wockhardt Hospital Bangalore and after a long series of tests i was diagnosed with Bronchitis, for which medicines were given. Besides that, Acid Reflux was being diagnosed which was a new term for me. I was immediately put onto Acidity Tablet.

Breathing Issues were still bothering a lot, so I shifted back to Delhi and after under supervision of my Family Doctor and with Inhaler my condition stabilized. Another Issue which was bothering me was Constant Weight gain. Even after good exercise regime i was unable to lose weight. So, after series of tests, I was diagnosed with Hypothyroidism. This was in 2008.

Starting in 2009, My family doctor observed Calcium deposits on my finger and asked me certain questions regarding Raynaud’s. I was still experiencing Blue Fingers and puffiness in Joints and toes. I was again put on few tests and the Results showed that i have Scleroderma.

I was referred to a Specialist who after series of other tests put me onto Steroids with other medicines starting from March 2009. In between i had a part of my toe amputated because it started developing gangrene. After almost 2 Years we realised that the disease progression is too much and medicines are not able to give me much needed relief so i was referred to another specialist for Dexamethasone therapy with Cyclophosphamide (Pulse Therapy).

For 1 Year, I was onto this therapy. But my Lung Complications increased and all of a sudden i would start feeling Breathless, not only during Climbing stairs but during Inactive time too. A Chest Specialist put me onto medicines for Lung Improvement for 1 Year. During that time My Pulse Therapy was stopped. After 1 Year i got some relief and My Pulse Therapy was restarted in May 2014.

This got over in June 2016 and i was on Oral Endoxan for a year or so. The condition was manageable. In November 2017, i started feeling breathless again and consulted a Rheumatologist who diagnosed me with PAH and my PAH journey started from there.
In June 2018, suddenly i was not able to breathe and started feeling restless and I was put on 24*7 oxygen support, with complete bed rest.

The journey since then has its ups and downs and by end of Year 2019, i am still in the same condition,
But the spirit to fight with this disease is not yet over. I have started believing that What does not break you, makes you Stronger in Life. II have also learned the importance of small things in life. Also, We should not take things for granted in life like Health and the Love of people who are close to us. In this Journey few things which kept me going :-

1. Never say Die Spirit
2. Eating small Meals on time
3. Taking proper Rest
4. Stress is to be thrown out of the system ASAP
5. Small Exercise regime too can work wonders
6. Never eat late at night or else ready to face consequences
7.Take Responsibility of your own Health.

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