Who Am I?

I’m a 20-something year old living with systemic lupus erythematosus and fibromyalgia. I was diagnosed at 16, but was lucky enough to go into remission quickly. I was so grateful to finally have a diagnosis, that I didn’t spend a lot of time thinking about the implications of that diagnosis. As a result, I never truly acknowledged or dealt with what it means to have this disease. Five years later, I went into a full-on flare. Suddenly, my concept of what it means to live with a chronic disease really changed. Trying to get the rest of my life sorted is proving to be a constant challenge, but I’m doing the best I can.

I started this blog for a lot of reasons, but mainly to help people who don’t have lupus or other chronic illness understand what it’s like to live with one. I’ve also found a lot of solace and support in connecting with other people who also have this disease. I was formerly running this blog at http://gradstudentwithlupus.wordpress.com and using the twitter handle @gradstdntwlupus, so you may be familiar with that. I’ve explained why I moved my blog here.

I tend to switch between introspective posts and medical update/life update type posts… I think I’ve got some good rants going as well (don’t we all?) I’ve tried to categorize my posts into what I think are useful categories. If you notice that they aren’t or have any suggestions on how better to categorize them, please let me know! Speaking of… I really love to hear from my readers. I hate to feel like I’m writing on and on and nobody is actually reading it. So please leave comments, questions, agreements, disagreements and any suggestions about what you’d like to hear more about.

Welcome!! 🙂

xoxo

-Shruti

@chr0nicbookworm (note that the o in chronic is actually a zero)

chr0nicbookworm(at)gmail(dot)com  (note that the o in chronic is actually a zero)

19 responses to “Who Am I?

  1. hii.. ^^ nice 2 meet u ^^… i have lupus 2 ^^

  2. Pingback: Cancer Health Center : : Congratulations To….ME! I Received The Versatile Bloggers Award, My Very First Blog Award! - Cancer Health Center

  3. Congratulations, I picked you for a Versatile Blogger Award! Go to my blog post to see how to accept your award.
    Dana
    http://gavertarm2bambidextrous.blogspot.com/2010/07/congratulations-tome-i-received.html

  4. Diana

    I am a nursing student writing a paper on Lupus from three perspectives: the patient, family member, and nurse caring for the patient with this disease. I also have a friend recently diagnosed with Lupus. Reading through your blog has been helpful in understanding what it is like to have this condition. Just wanted to say thank you for what you are doing 🙂

    • So glad that I could help!! It’s great to know that I’m helping more than just the people suffering. I hope you’ll be able to pay that information forward to your patients. (and that you aced your paper!) 🙂

  5. Pingback: 2010 in review « How Can I Explain it to You? The Life of a Grad Student with Lupus

  6. Erica Anderson

    I am just now searching for online support, there isn’t anything locally in the area. I do not have lupus. I do have fibro, trigeminal neuralgia, levido reticularis, degenertive disc disease, and I’m a single mom. Yay for me! Reading your blog has reminded me how important it is to see ALL of my doctors, not just the pain clinic. It has also reminded me that there are others out there like me, I just need to look for them.

    Thank you,
    Erica

  7. Suzanne

    Hi Everyone!

    I’ve read through the discussions in this community and thought that some of you might be interested in a clinical research study. I work with a company that is dedicated solely to connecting people with clinical studies and we’re trying to get the word out about a study for people with skin lupus. If you or someone you know has skin lupus and might be interested in a clinical study, visit our website at http://www.lupusskin.net/sns.htm. Be sure to check out the FAQ page!

    Thank you,
    Suzanne

  8. I HAVE LUPUS AND FIBROMYALGIA. I AM 57 YEARS OLD AND WAS DIAGNOSED WITH BOTH WHEN I WAS 48 YEARS OLD. SOMETIMES, I FEEL LIKE I’M THE ONLY PERSON IN THE WORLD WITH THIS. I HAVE FLAR UPS FROM TIME TO TIMES, BUT THE WORSE, WAS WHEN I WAS FIRST DIADNOSED. I WAS IN BED FOR 5 MONTHS. NO ENERGY TO GET UP, EXCEPT TO GO TO THE BATHROOM. MY LOVING HUSBAND WAS THERE FOR ME THROUGH IT ALL. WHAT A WONDERFUL MAN!! HE PASSED AWAY JUNE 2010 AND I FIGURED THAT WOULD START ANOTHER FLARE UP, BUT GOD PULLED ME THROUGH IT!! WHAT A WONDERFUL MAN! MAY GOD BLESS AND BE WITH EACH AND EVERYONE GOING THROUGH LIFE WITH THESE TERRIBLE DISEASES’. I HOPE MORE PEOPLE UNDERSTAND US ALL, WHEN WE’RE GOING THROUGH LIFE AND HAVING TO SAY “NO, I CAN’T DO IT OR NO I CAN’T GO.” MAY GOD BLESS ALL!!

  9. Hi Everyone!

    I’ve read through the discussions in this community and thought that some of you might be interested in a clinical research study. I work with a company that is dedicated solely to connecting people with clinical studies and we’re trying to get the word out about a study for people with skin lupus. If you or someone you know has skin lupus and might be interested in a clinical study, visit our website at http://www.lupusskin.net/sns.htm. Be sure to check out the FAQ page!

    Thank you,
    Falon

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