About


The Purpose of This Blog

Hello there!

My primary purpose is to join the existing community of people who either have lupus or love someone who has it.

But I’d also like to demonstrate that lupus does not define who I am; I am a writer, a wife, a mother, a friend, and I also just happen to have lupus. So I write about whatever’s happening in my life at the time. Sometimes you may find the content relevant to your own life, and at other times perhaps not. With a little humor and a lot of sarcasm, LupineLife aims to entertain, educate, and inspire–or at least to provide brief respite from your workday.

My Story

I began developing arthritis when I was 28. But without health insurance (I was a part-time college instructor), I didn’t get officially diagnosed with lupus until a year later, after my symptoms had become unbearable enough that my in-laws graciously paid for me to have private insurance.

I first wrote about my experience of getting diagnosed and navigating the health-care system on a now-defunct blog. But the story is still available:

Part I

Part II

Since I first told my story, I’ve worked at physically demanding jobs in order to pay the bills and, ultimately, to have health insurance without my in-laws’ assistance. I eventually landed a desk job that was much easier on my body and stimulated my mind. Now I’m a stay-at-home mom and freelance copyeditor, and my greatest challenge is to ensure that I’m taking care of my needs (sleep & food) as well as those of my baby.

I’ve developed new symptoms over the years and am continuing to learn more about how lupus operates. But I’m excited that this blog has allowed me to meet new people and become part of a larger community of people who are passionate about educating the public about lupus and about just living their lives to their fullest potential. That’s my intention as well. So thank you for taking the time to read about me and my blog, and I hope you’ll keep in touch.

~ Amber, lupinelife.com

Amber Dickey      best_of-badge-lupus

Comments
14 Responses to “About”
  1. Lee-Anne says:

    Hi Amber
    I have enjoyed reading your blog and it has defiantly helped me through out my own Lupus diagnoses and journey, ]Today you inspired me to write a post about my Lupus on my blog which It was kind of a big deal for me as many if my friends and colleagues don’t know that I suffer with Lupus and those that do don’t seem to understand the disease. I’m hoping that reading the blog post will encourage the to ask me questions or perhaps encourage others to have a conversation about Lupus and how it can affect its suffers

    If you could take a look I would appreciate it and if you could leave a comment I would love it!

    http://wotshernameagain.blogspot.co.uk/2014/03/living-with-lupus-but-still-blogging.html

  2. Dear, Amber:

    I have enjoyed reading your posts and like how you add a human touch sharing your experiences with your followers.

    My book entitled “The Lupus Encyclopedia” will be coming out in print this May. My editors at Johns Hopkins Press are looking for active online lupus advocates to review the book (a copy would be sent for free). If you are interested in reading and reviewing it, please reply back and I will put you into contact with my editor.

    You can find out more about my book at:
    My facebook page http://www.facebook.com/LupusEncyclopedia or at

    http://www.amazon.com/gp/product/1421409844/ref=s9_simh_gw_p14_d1_i2?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-2&pf_rd_r=0DZN5JNVZW694C877PQ3&pf_rd_t=101&pf_rd_p=1688200382&pf_rd_i=507846

    Thank you for this consideration.

    Donald Thomas, MD
    lupusencyclopedia@gmail.com
    http://www.facebook.com/LupusEncyclopedia

  3. Tali Wee says:

    Hi Amber,

    Thank you for sharing your story! I related to your post about finding a new rheumatologist who ended up being a bad fit and poor doctor. There should be a forum for the best docs in each area, because finding the right partner/mentor/problem-solver in the mystery of autoimmunity is so valuable. You’re mom’s advice is my personal mantra – we are our best advocates; we have to be! Congratulations on your perfect baby Kai, and I’m so sorry to hear about that lousy birth story. That wasn’t right – so insensitive! Did you feel comfortable with that doc before labor? Also, have you experienced flares post pregnancy? I recently started a blog of my own and would love to contribute to your blog if you’re accepting guest posts. I’d love to share my story of finding the right doc and autoimmune diagnosis.

    Thanks for tackling the tough topics.

    Best,
    Tali

    • lupinelife says:

      Hi Tali,

      Thank you for your comments! I agree: it would be wonderful if there was a forum for the best docs in your area. I tried to do my research, but I guess you just never know until it’s too late. As far as my son goes, thank you so much! My labor and delivery doc wound up being different than my OB (who scheduled vacation at the same time as my due date :/ ). But throughout my labor, the doc was excellent. It was only after I delivered that things went wrong, and the doc had disappeared by then. I never saw her again. And unfortunately, after having had such a long period of remission, I had a bad flare recently. I wrote about it briefly here.

      Your blog looks great–you had me with the banana pie… Let’s talk more about a guest post. I’ll contact you privately.

  4. Jenny Gordon says:

    I’m reaching out to give you a heads-up about a Facebook chat on the topic of “Lupus and General Health” hosted by Hospital for Special Surgery in conjunction with the S.L.E. Lupus Foundation on May 14 (5:30 – 6:30 pm EST). To join, all you have to do is visit https://www.facebook.com/hspecialsurgery, “Like” our page and join the conversation.

    I enjoyed reading your blog and hope you are able to participate in the chat.

    Please feel free to email me with any questions. Also, please let me know if you would like a flyer to share with your followers.

    Best,

    Jennifer Gordon
    Goodman Media International, Inc.

    • lupinelife says:

      Thanks for sharing this information, and thank you for checking out my blog! I’d be happy to post your flyer, and I look forward to the Facebook chat.

      Take care,

      Amber Dickey

  5. Dana HendersonMoore- says:

    Hi Amber
    We used to ride the train together 🙂 Anyway, what an inspirationala story! My mom has lupus and it’s totally changed her life since she was diagnosed too late.Thanks for posting this link to facebook!
    Dana

    • lupinelife says:

      Hey Dana! It’s nice to hear from you. Thank you for you comment. I’m sorry that your mom has lupus; it sounds like it’s had a much more negative impact on her life than it’s had on mine. If you don’t mind me asking, what do you mean by diagnosed too late?

      • Minjung says:

        Thank you for your encouraging words. I’ve had AS since I was in my early teens. Ironically, I knew what I had but it did not have a name. For years, i was told i was hetalhy and simply needed more exercise. Anyone with AS understands my frustration. I cant believe how strong I can be and how much I’ve pushed through. Only three weeks ago and two weeks before my 50th birthday did I get a diagnosis. I was hanging on by a thread. Now I can research not only what I can do to ease my symptoms but how to manage my perception of the ailments. You offer a glimpse of the sunshine in life I refuse to live without. HOPE

  6. I was diagnosed with ankylosing spondylitis at age 28, and then with lupus at age 35. I’ve always been very athletic, so these were shocking to me. Thankfully, I’m doing fairly well most days and continue to work out. The ankylosing spondylitis was much more painful than the lupus for me, but I know it may be different for other people.

    I’m glad you now have a job that is less stressful for your body.

    • lupinelife says:

      I’d never heard of ankylosing spondylitis until now, and I had to look it up. It sounds very painful, and I’m sorry you’ve had to deal with that AND lupus. But it gives me hope to know that you have good days and are able to stay active.

      As far as my job goes, I’m starting to understand that it’s a trade-off: I’m not as physically tired now, but the lack of physical activity has it’s downsides, too. I really need to make regular exercise a priority…

      • Rebecca says:

        Hi Lauren,Thank you for such kind words. I will have to think on that I believe there are so many renasos really. And, doing an all of the above approach has worked for me. I’ve written about a lot of my journey on my blog that is linked to above but it is in bits and pieces so I really appreciate your comment because I know that it would be good for me to put it together in a more cohesive and timelined manner.I wish you all the best. Keep fighting!Jenna

    • Doen says:

      i just thought id write a short note ffor ereyvone i lived’ undiagnosed with as from the age of 15 until 38 being told i had sciatica and all other pains were supposedly consequences of the sciatica until i was sent to an eye speciallist suffering with severe irisitis who then refered me for test for as (the two are strongly linked) so after tests and mri scan to confirm as my rheumatologist put me on Ethanercept (Embrel) injections once a week and i am a new woman i can honestly state that after all those years with some degree of pain every single day from the first injection i have not had a single twinge of pain since!

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