Coming out (with a lupus blog)

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

3 thoughts on “Coming out (with a lupus blog)

  1. Great blog! I have lupus too and am also in the “coming out” phase with my blog. It takes a lot of courage, and it’s scary at first. But keep writing– I love that you’re trying to expose people to the PATIENTS perspective on lupus. I’m sick of hearing doctors telling me what to expect… because lupus effects everyone differently, so doctors can’t possibly know what to expect next! So continue to share your experiences!

  2. Any reccomendations on where to buy head wraps online? I’ve heard that silk one’s are a no-no. By the way, LOVE LOVE LOVE your blog. Thank you for writing and sharing your thoughts. I’m a lupie newbie and although I don’t wish this on anyone, it’s great to know there are others out there dealing with similiar things.

    • Thank you for your comment and compliment!! It brings me absolute joy.

      Let me be honest with you, when I first went shopping for head scarves, I was completely frustrated! I did not know how and where to get these necessary pieces!

      You are correct- some silk scarves are a no-no because they tend to easily slip out of place and they do not allow your head to breathe! I do recommend using scarves made from Indian Silk. My best friend, who is from India, introduced me to this material. The silk is a bit different from the conventional silk I was accustomed to- as it is a lighter material that not only “breathes” but also stick in place. You can find this material in many random shops and you will find these scarves come in variety of sizes (and on the cheap). Also, you will be overwhelmed with the different and gorgeous patterns! I would not recommend buying Indian Silk on-line. This is a material that you need to see, feel and try-out. Also, try going to departmental stores or even thrift stores. My first scarves were handed-down to me from my aunts- who use to wear them as a fashion statement in the 60s (just make sure you stay away from that “silky” silk). Many of the scarves that I own were intended to be for multiple purpose (i.e., used to tie around the neck, as a headband, etc)- you just have a scarf that is large enough to tie around the head.

      As for buying head-scarves on line, I have used the following site from the American Cancer Society. This was one of my first scarf purchases and it was super easy to use:

      http://www.tlcdirect.org/subcategory/AmericanCancerSocietyHeadScarvesandKerchiefs.html?crcat=headcoverings~headscarf-cancer-patient&crsource=adwords&crkw=%2Bhead%20%2Bscarves%20%2Bfor%20%2Bcancer%20%2Bpatients&crcampaign=6953792434&gclid=CK2-l82H36sCFQFS7AodqhrYNQ

      Luckily, my body is responding to my treatments and my hair is starting to grow back (happy dance). The growth, however, is NOT at an uniform rate (DAMN!). I do still rock some bald spots (I think they give me character- ha!). After a year of being bald, I am at a point where I am comfortable rocking this look. However, like I have mentioned, there are times and occasions where we use cover-up products (i.e., wigs and scarves). Sometimes I do feel a bit self-conscious about my “character spots”. I am become aware of people who are taller than me or behind me who may be starring at my spots. There are other products that cover-up just these bald spots. If you are in the same situation as me, where we do not need a full cover-up, may I recommend the following product: The Joan Rivers Great Hair-Day (http://www.joanriversgreathairday.com/?gclid=CMmnlNT03qsCFQTu7QodkjFaOA). This product comes in different shades (brown, blonde, light-blonde, red, etc) and was marketed for women with thinning-hair. I find this cover-up to last through a night of cutting-loose and did not smear, smudge and etc. However, you will see the product on your pillow case the next morning.

      I hope this information works. Please let me know if you need more information.

      Good luck with everything and remember to keep smiling.

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