India – Holding Out for Hope #LupusLife

After that little bounce backwards where it almost seemed like we wouldn’t make it, friends and family stepped in a big way! Mum and I arrived in New Delhi, at 1am on 27th June.

The flight was tough. Altitude and the strain of travel made me so ill that by the time we arrived it made sense to check in at the hospital immediately. In the one week we’ve been here, I’ve stopped by the emergency room 3 times, but so far we’ve managed to keep to the general plan to not get hospitalized so that finances can stretch out.

The first week has been for the most part screening, testing and more screening. Because I have major crossover between autoimmune and endocrine disorders the doctors have to be extra diligent not to mess things up.

The most unpleasant experience so far was the endoscopy and biopsy done to check on continuing gastric issues. I couldn’t quite go under because the anaesthiologist was afraid that my cushingoid neck might cause some choking. So I pretty much felt everything.

Interestingly, the double MRIs done just a day later were so much less unpleasant. But then there was no invasion.

The next part will be planning, planning and more planning. We are seriously short of cash, so the goal is to be done with this part before we ran out of cash and have to be held hostage or something. (See about my fundraiser)

I must talk about the guest house we’ve been staying at. What happens is that arrangements are made for patients and their caregivers to live in relatively cheap guest houses or hotels right next to the hospital.

BLK Super Specialty Hospital is in an area called Karol Bagh, New Delhi. Just a few meters away, we were placed at a guest house called Bajaj Home Stay. In the last few days, I’ve come to the conclusion that it might not be entirely the cheapest room, but it is the cheapest guest house with clean rooms, air conditioning and decent food. 

The first few days here I just wanted to go home. I was so sick, it was so incredibly hot, and I missed my pets. The staff and manager here have been super kind.

I got sick late Wednesday night, and the manager gave out her own car to rush me to the emergency room. The next few days were tough because my gall bladder and stomach were inflamed. The manager made me a sweet drink that I’ve been drinking everyday that’s helped to soothe when I’m burning up. And when I couldn’t think to eat, she went and made ugali, albeit with yellow maize flour, and chicken stew, which I was able to eat and which made me get some strength back. 

I’ve experienced little bits of humanity here and back home, that have made me a lot more hopeful while dealing with a disease that for the most part sucks away hope. 

Lupus is cruel. We need hope to keep going, to keep fighting. I realize that I may not find a cure in India, but even a better understanding of what I’m dealing with, is an offer of hope.

Until next time… Love and light.

The Online Fundraiser towards my Medical bills is still live. All donations will be greatly appreciated.


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