|Photo Credit: Michelle Claessens|
In 2012 I struggled through four months of being in and out of the hospital during Hurricane Sandy were brutal. I am thankful that the power of social media helped me receive safe passage to my family hospital. I remember being in a E.R. where all of the nurses on the floor had no clue what lupus was! What kept me safe was having a health care proxy that was well informed about what to do should I be unable to make health care decisions on my own. No treatment was done until it got past mama bear!
Lupus can be a cruel mistress. An un-spotted UTI gone sepsis in my blood stream led to failing organs and mental health issues. MRIs, brain scans, spinal taps, blood transfusions were some of the many procedures prescribed for me. I almost didn't make it out the health care system alive. I remember asking for DNRs (Do Not Resuscitate) forms in case my quality of life became a vegetative state. I remember having to re-learn how to become accustomed to daily living and caring for myself.
|My awesome family being supportive during my 2012 hospital stay.|
It's been almost 2 whole years since my major hospitalization and I'm only just recently during these past few months feeling back to my normal glitterati self. There were days when I looked in the mirror and didn't recognize myself. Steroids had ravaged my body. Psych medicine had tormented my mind.
So I ask you this now, what burning questions do YOU have about life with lupus? What do YOU wish there was more of for us patients? Let me know!