Welcome to Redefining Myself!

My inward journey to living a mindful and quality life

while living with NP-SLE, RRMS and CIDP

and their overlapping accessories.

Slapping the face of many things demyelinating.

Wednesday, January 23, 2013

Beware of the pity-pot

I've explained to my baby preteen girl, that even though by American standards that we are living at the poverty level, we are still so blessed to have a roof over our heads (even though it is a fight to keep it over our heads, which I'm sure a few of you can relate to). 

That if we lived in other countries with my diseases and their secondary companions and her with her bleeding disorder, we'd most likely have no health care, no medications, and living as a financial burden on family members, and living in extreme poverty. I told her that, for example, we'd be effed if we lived in my great grandparents native Russia or Poland or her dad's native country, Mexico; unless we had very wealthy family to depend on.

When benlysta™ (very expensive infusional medication) was approved by the FDA here in the US, I spoke with an Egyptian rheumatologist at Cairo University about it and he explained to me that many patients in his country couldn't even afford to pay for the cheaper off label drugs, let alone this new medication.

One Ukrainian neurologist explained to me that I'd be in terrible shape in any of the Eastern Block countries. I told her that I understood that I'd be very F'd and that I am very mindful to other people around the world who have even more grave illnesses, that have dependent children and do not have the medical care or governmental assistance that I have.

I try to keep this perspective when I'm feeling overwhelmed with my little corner of the world.

Wishing you well and a pity pot free day!


#SickChickPMA/#CNSGrrrl