LUPUS AND ME
I am a
soon-to-be 30-something (currently on a 2-week countdown) latina jew who has been diagnosed officially with lupus for three two one years. I am one of those many cases that should have been diagnosed years before.
Here is what gave the final clue to the lupus diagnosis: I started feeling like death warmed-over when I was experiencing 24/7 flu-like body aches, joint pains, headaches, numbness/weakness in my limbs and skin rashes (for which many years was attributed to dermatitis). Also, I started to loose my hair… and FAST! What started out with a small bald spot (which I blamed on stress caused by shady boyfriend at the time, Mr. Rudy Aguinaga- and yes- he was cheating on me) spread like wild-fire. So not only was I feeling crappy, my hair was everywhere except on my head. Finally, after a positive biopsy from my scalp and meeting other criteria for diagnosis, I was given the official title as a lupus patient.
Treatment has been a series of trial and error. After no success with Plaquenil (anti-malaria drug that takes 6-months to come into effect) and steriods, I am now on a regimen of
shooting myself up with Methotrexate (anti-metabolite aka a form of chemotherapy) once a week belimumab (Benlysta), methotrexate, azathioprine (Imuran), daily steroids, and other pain-relievers (yay!). So far, I am seeing the benefits but am dealing with the drug side effects feel like I am on a rollercoaster that has its extreme lows with the mid-highs. Long story short, I am still waiting on the magical state of remission and starting to accept a different norm.
To take over the situation, I decided to start this blog to express my point-of-view of my experience. I welcome all comments and experiences, as we can learn from each other. Lupus impacts everyone differently.
I currently live in Houston. I was born in Venezuela but was raised as a true boluda from Argentina. How is that possible you ask? My mother is from Venezuela and Jewish (my maternal grandmother is Polish-Jew and my grandfather is Spanish… technically Basque). My father (known as viejo) is from Argentina and his parents are from Italy. My family is also known as the Mafia. Do not be alarmed but its true ;). I am blessed with an extreme support system. My family and friends are my secret to success.
I have a degree in psychology with an emphasis on research. I am currently trying to finish my graduate degree (lupus keeps getting in the way!). I have 8-years of experience as a project coordinator/research manager in the health-services research field. My team’s research focuses on shared medical decision-making and increasing proactive and collaborative communication between the patient and the doctor. I am also an active member of the Lupus Foundation of America- Texas Gulf Chapter. Lupus has not only put everything into perspective but it has become my wake-up call to enjoy life, my family and friends. I love music, art, and expressing myself in anyway possible.
Follow me on Twitter: @divawithlupus
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