How This Blogging Adventure Began

“The journey of a thousand milesbegins with a single step.%22

September 15th, 2009

Dearest friends and family,

Yes, it is past 3:45 am and I am still up. Don’t be mad, it’s the steroids’ fault.  It doesn’t let me sleep sometimes.  Tonight is one of those nights.  I just wanted to tell you that I have started a blog about my journey living with Lupus.  This is a big step for me.  I’ve found it hard to share my struggles or even the fact that I have this disease, but I was inspired by an actress named Lisa Ray.  She was in the Canadian film “Water,” which I saw and I was captivated by her performance.  I found out the other day that she had been diagnosed with a rare form of bone cancer and that she had started a blog to share her experience with the world (lisaraniray.wordpress.com).  I went to the blog and was surprised to see that she is undergoing chemo and taking steroids… just like me.  I read in amazement as she talked about her sleepness nights and her weight gain and her “moon face.”  It gave me so much comfort to read her blog, to see how strong and beautiful she is and to know that right now she is probably wide awake in Toronto, just how I am here.  So I started one, too, and I hope I can inspire other people with lupus and show them that they can get through it, that they aren’t alone.  And maybe it will help the medical community solve this mystery called lupus or even solve some of the mysteries of the brain.  I am offering myself up as a lab rat to the world and the best thing is that no animals get hurt (PETA would love me!).  This blog also serves as a way to keep my family and friends informed and updated on my medical condition.  It gives me a way to post questions as I do my research and empower myself by finding out more about my disease.

I used to be scared of the “blogger universe” with all the personal sharing and all that, but now I see it as a powerful tool that, if used correctly, can instigate powerful change if only in the form of one girl finally realizing that she is not alone.  There is someone else who feels the way she does and look at her –  she’s still here.   And I am still here, people.  I’m not going anywhere.

I love you all.  I hope you enjoy reading it because I really enjoy writing it.

I wrote this email during a severe flare-up of Lupus Cerebritis (brain tissue inflammation), which, in combination with a high dose of Prednisone, resulted in a period of psychosis similar to that of bipolar mania. For eight years, I was very private about my struggles living with Lupus.  When my lucid mind returned, I was horrified to realize that I had been broadcasting my very personal, and at the time, very manic experiences for the entire internet universe to see.  Ultimately, I chose to continue telling my story, because although I was not entirely myself when I wrote the letter above, my desire to reach out and connect with people remains the same. Originally called “Lupus Face: One in a Sea of a Thousand,” now titled, “Face Forward,” this blog is meant to be a meeting place, a virtual hug to my readers (lupus and non-lupus warriors alike), and a way of keeping myself accountable in my journey to live a life of balance, health, and epic adventure. The domain name,  lupusfaceforward.com, merges the original and current blog title. It reminds me to move forward, but to never forget the lessons of the past.

Thank you for coming by and being part of my journey and hopefully, sharing some of yours with me.

Elena

Since its inception in 2009, Face Forward has been:

12 thoughts on “How This Blogging Adventure Began

  1. I did read an article today in The Hindu.. wr it shares about Ms.Lisaray diagnosed for Cancer.. Just wanted to see her blog ended up reading your’s.It is so nice to see a positive air around you even at times of difficulty. I am a just born for blogging.. jus created it say a while ago…but really getting surprised for the confidence you showing.

    Keep writing more for we all love to read the way u write.

    God Bless you..
    Ramya Rajagopal.

  2. Hello,

    Read your blog and related to much of it. I am a mother to a daughter with Lupus. It took months to have a diagnosis I suffered with her to find answers.

    It wasn’t till she was with a friend on a shopping trip she suffered multiple seizures (luckily a paramedic just happened to witness and came a running) She had a blood clot to the brain, stroke and severe brain celebritis.

    That was 2007, We, and I say we have went through this as a family -the methelpredisone pulses of 1000mg x3, the chemo, the hair loss, the many meds we tried to put this horrible disease in some sort of remission (she relapsed twice). My daughter doesn’t remember much, it took a long time for to come back to us.
    Remarkable today she is a 2nd year BioScience student at university. She takes allot of medications She is on Myfortic, still on evil p, antiseizure meds etc. etc.

    Your blog is wonderful, you are a very captivating person. Its a comfort to me that you are living a rather normal life right now. I need hope somedays that everthing will be alright. You never know how much you love someone till you almost loose them, and you never hurt so much until you see someone you love suffer.

    Thank you for sharing

    Sharon

    • Hi Sharon,

      Thank you so much for taking the time to write me. I am so glad that your daughter is in school now and that, despite the trauma of her experiences and the barrage of meds, she is on her way to better things and times. Never forget how much your presence and love is helping your daughter. I would not be here if it weren’t for the strength and love of my parents. I can’t imagine what it would have been like for both you and my parents, to face the chance that the daughter they knew would never return to them. In many ways, and because I also did not remember very much, I feel that the trauma was more my family’s than mine.

      I will keep you and your daughter in my thoughts. Things do feel much better for me these days, but I still have so much to learn about what it takes to keep things this way. It does feel better to know that through my blog, I am figuring things out alongside families like yours. :)

      Take good care.

      – Elena

  3. Hello, you have a beautiful name. I’ve never liked my name. I came across your blog while searching Hugh Laurie, and the lupus connection. I had read a piece in a magazine that said “insert your favorite lupus joke here”
    Not understanding I googled the two. I have Lupus, but I don’t know any jokes about it. Anyway, I would like to hear from you, I hope you are doing ok. Bye for now. Vernette

    • Hi Vernette,
      I am glad you stumbled on my blog! The jokes I think refers to how Dr. House and his team of doctors on the show always think the disease they are dealing with is Lupus and almost always they are wrong. As for how I am doing, I am doing much better than when I wrote the letter posted above. It’s been two and a half years since then and with a lot of hard work and lifestyle changes, I’m feeling the best I have in my entire “lupus life.” There are still struggles as there always will be, but it helps me to write here and connect with people like you. How long have you had lupus?
      Elena

  4. Hi Elena I stumbled onto your blog also by mistake and its the best mistake I have ever made. I was diagnosed with Lupus 4 years ago, and Rheumatoid Arthritis. As you know its a struggle everyday, a real kick ass challenge. I love reading your blog, you have a way of expressing your thoughts, the truth as it is, the facts, and you are able to say what I am thinking and no one else understands. I love your bucket list, I also have on my list to write a book of publishable poetry, which I am working on right now. It is a collection called “God stories” and was initiated by my time spent in hospital last year when I was diagnosed with Ovarian Cancer. I just thought I would say Hi.
    Regards Marcelle

    • Hi Marcelle,
      Thank you so much for your kind words. The reason why I continue to write this blog is to connect with people like you. It sounds like you’ve had an intense health journey with the different ailments you’ve had. I think it’s great that you’re telling your story through poetry. Do you have a blog? I would love to read it! I hope that you are doing well and thank you again for choosing to spend time exploring my blog after you stumbled upon it. I hope to be responding to more of your comments in the future!
      – Elena

  5. Hi Elena,
    I am still in the ‘scared to post’ phase. I have been on a roller coaster of Lupus for the past 6 years, and finally starting to get the hang of it. I absolutely loved your last line ‘and a way of keeping myself accountable in my journey to live a life of balance, health, and epic adventure.’ That is absolutely the right attitude to have!
    You are a beautiful writer, and if I were half as good of a writer as you I would be posting daily. :P Thank you for your courage, your spirit, and dedication to putting a beautiful and powerful face to Lupus!
    Many Blessings and thanks,
    Valerie

    • Thank you for your thoughtful and supportive message, Valerie. It made my day. :) Yes, it is scary (even after almost five years of blogging) to broadcast what is so intimately personal and what can be so hard to articulate, not only to others, but to ourselves. I encourage you to write though, even if it’s just you creating a blog and setting it to private till you’re ready or just writing your thoughts in a journal. All the physical and emotional pain we experience when we deal with lupus builds up quickly and it is important to release it. I feel like being self-aware is one of the most powerful weapons you can have when dealing with a chronic illness and for some of us, writing is an important part of that. Keep me updated on your journey. Your story is important! It’s so nice to meet you here, Valerie. Visit anytime and let me know if you have any suggestions of topics you’d like me to post on!

      Sending healing vibes your way,

      Elena

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