About The Diva

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.

JUST ME 

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.

030_Hagrid_Softphoto-4-1_Polak_Black

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

Add me to your Google+ circle

2011

2011

wpid-facebook_1533618324-TonyBlack.jpg

Rocking in 2012

2013 with my g-g-g-gorgeous brother

2013 with my g-g-g-gorgeous brother

Advertisements

14 thoughts on “About The Diva

  1. Hi I am a 43 year old single mom of two boys a
    19 year old and two year old I was l have lupus raynauds and scherlerdermia. I found out two years ago when my son was 7 months old. I find myself angry and resentful of my health issues. I have two master degrees and find myself limited to the job market due to the frequent doctor appointment I have and other things that occur with this disease I feel jilted

  2. Hi Shana, Thanks for your comment! I think this is a very IMPORTANT topic. I completely understand your frustration as I have been and still experiencing first hand. HOW ARE WE SUPPOSE TO DO OUR BEST WHEN WE ARE GIVEN THE SHORTEST STRAW? I will be dedicating a blog within the next 2 days about my experiences with work/school and lupus. I hope that it will help. Until then remember that you have one life to live and to take it day by day/step by step. Let’s live for today.

  3. Hi I am 39 and was diagnosed with lupus at age 21 while pregnant with my first child. Your stories inspire me and make me laugh. Thank you for that. I have found the only thing that helps me is opiates but have become very hard to come by these days as all the abusers are screwing it up for those of us who need them. I will check back often to follow your blog.

  4. Hi, I recently found your blog and must say you’ve answered an issue I have with myself. I’ve suddenly started thinking I am grossly fat. My mom says I am not but my wonderously foggy head thinks I am. You’ve explained it better than any doc could as to why I’ve started thinking this. I doubt this thought will go away anytime soon, but Thank You for giving me the bit of knowledge that all of the issues I am dealing with does not necessarily make me mental(too much). I am still learning things-been diagnosed with SLE and RA for 21/2 years now. Thank You for being honest about what you are going thru.

  5. I just found your blog and have to say it’s very refreshing. Especially the pimp cane. I’d JUST been telling someone I need a cane,but I’m young ….and wanted to do it n a pimp way lol

  6. Hello! Someone in my Facebook group shared this website with us so I came to check it out.
    I’m definitely enjoying the information. I’m book-marking and will
    be tweeting this to my followers! Outstanding blog and fantastic style and design.

  7. This is the perfect site for anyone who would like to understand this topic.
    You understand so much its almost tough to argue with
    you (not that I personally will need to…HaHa).
    You certainly put a fresh spin on a topic that’s been written about for decades.
    Great stuff, just wonderful!

  8. Pingback: Lupus: The hard to diagnose disease affecting many of our people

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s