I was diagnosed with lupus in 2009. The symptoms came on quickly, joints hurting, lots of pain. I was on Benlysta infusions until my health insurance company changed the handling of getting the drug to my doctor’s office. The doctor’s office would not allow a 3rd party in handling this drug. They did not want the quality of the medicine to be compromised. This was in 2018.

Since then I have been having to take Benlysta injections which my husband or niece give me weekly. These injections are painful and I feel are only about 75 to 80% effective. In November of 2019 I had to resign from my job at an early childhood center, which was very hard for me as I loved my job. My health started to decline including mental/cognitive. It has been very hard to accept that this is my new normal.

I have a nephrologist, a neurologist, a neurosurgeon – I have a gastroenterologist, hearing doctor and primary care doctor. No one wants to be handed this sentence. My quality of life has been deeply affected. It seems most people do not understand lupus and think that we are “faking” this disease. I am now on disability... which I never thought would happen to me. I feel like such a failure to my family on a daily basis.