July 8, 2014

Down The Lupus Rabbit Hole!

Photo Credit: Michelle Claessens
It's been a long time since I picked up my writing pen, but here I am back at it again. So much has transpired since we last spoke...I almost don't even know where to begin. It's as if I have been swirling down a rabbit-hole of health care and boy has it been a scary road to walk....or tumble in.

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.
Everyday I strove to do better, and wondered how the outside world was doing. My family was very closed via social media on my condition. I now have instructions on who is to be informed about my health while I am away and unable to be online. So many of you were worried sick and (heaven forbid) if there is a next time I fall ill, my family will know how to communicate better so that my online lupus/health family are in the know.

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. There needs to be more discussion on lupus life for those of us who are living with it. Which medications affect how dangerous sun rays damage our skin? When is it time to seek a therapist? What foods can help ease inflammation? What are the top 10 questions to ask your rheumatologist? There is so much we NEED to know and not enough current information on how we can have a better quality of life.

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!