THE LUPUS BLOG
This is my coming out; my chance to tell everyone (well…realistically…anyone who wants to hear it) how it REALLY is to live with lupus as a single, young (30-year-old- no comments please) woman. I have been thinking for many months on starting a blog in hopes to help anyone who may be in my shoes. I am lucky to have not only a great support system of family and friends (not to mention a great team of doctors); but in my circle of support I have a dear friend (I will call Veero) who is a “veteran” to lupus. During my “What the hell is happening?! and the “Is this normal?!?” freak-outs, I am able to send her messages and pick up the phone when it hurts to type. But as you may know, lupus is not an equal-opportunity disease, as it affects every person differently. Although we are similar in age (30 and fabulous), single and both trying to live our life, Veero and I have very different lupus-characteristics.
There are many books out there related to lupus. But from my research, they are from a doctor’s point-of-view who is giving you facts and “what-to-expect”. However, these “what-to-expect” seem to be repeats of what you learned from your own physician and from your own web-searching (let’s face it- your Google search history is most likely comprised with Lupus AND fill in the blank). For example, “limit your exposure to the sun. When out in the sun, wear sunscreen” (No SHIT).
The other books come from the patient point-of-view, expressing their journey of lupus-symptoms and frustrations (I will be doing this as well) BUT these patients are different from me. They have their career established, married (some with children), and it seems like the majority of their goals have been met prior to lupus. I am that young-professional who had so much to bring to the table and assumed that I had all the time to do so. YIKES.
During a lupus-hate session over brunch, Veero and I expressed how we do not have voice (me more loudly- I am argentine/jewish/spanish/italian). Finally, after exhaustion from bitching, we decided to become the voice. Because our experiences and perceptions are different, we both have our own blogs. I recommend you visit Veero’s blog (plug!).
So here is my chance to be that voice. Stay tuned as I will be talking (and most likely queening out) over the daily aspects of my life with lupus. This will include social (i.e., dating, keeping a social life), professional (i.e., trying to keep succeeding in work), and personal (i.e., everything else) aspects of life. Although, it may seem like I am bitching, I am not an angry women. I am just saying what everyone else is thinking and saying it with a smile. We can get through this, because of that fabulous attitude we carry.
More to come…
“If you don’t like something change it. If you can’t change it, change your attitude. Don’t complain” – Maya Angelou