One Patient's Positive Perspectives

xxx

Michelle

Lupus Awareness Blogger No. 4 – Life in the Autoimmune Lane

The journey toward a lupus diagnosis can be like the “long and winding road” sung about by the Beatles in their Lennon-McCartney ballad and last song written in 1969.  Today’s post highlights long-time lupus blogger Michelle, who has blogged for six years.

Michelle explains that before her auto-immune journey started, she thought her “life was pretty normal married, kids, grandkids, working, living the American Dream… Everything has been turned upside down” and now she is “trying to figure out how to right” herself again. She tells in her recently updated “About Me” page, “In the past I’ve been told that I’ve had about 5 different autoimmune diseases and then by next visit well, um maybe no.  The frustration and fear of not knowing was driving me nuts. So for now, I’m just thankful I have a name to the face of the disease that has turned my world upside down.”

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In the Autoimmune Lane

Many lupus patients can relate to the relief of finally having a name for the many faces of lupus attacking their body’s systems.  I know I can!

Michelle tells about her first motivations to blog.  “If anyone out there is battling an autoimmune disease they can know that they’re not alone. All of your fears and frustrations I share with you. I feel it all too. It’s a very scary thing to know that your body is attacking itself and there is no cure. All we can do is take the medicine that they tell us to take, try and stay as healthy as we can, stay away from stress (ha) and pray.” Check out the story about Michelle’s lengthy, and sometimes frustrating emerging, possible lupus diagnosis at Life in the Autoimmune Lane.

4-purple1Lupus Truth No. 4 – Immune System Off Course

Understanding Lupus: In lupus, something goes wrong with the immune system, which is the part of the body that fights off viruses, bacteria, and germs. The result is the production of auto-antibodies that cause inflammation.

To learn more about this lupus fact, please read my post from last year, published on  May 4, 2012.

Plan to POP — Put on Purple — for Lupus May 17th

Remember to coördinate your colors to get ready to “POP” — Put on Purple — for Lupus on Friday, May 17th!

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Comments on: "Lupus Fact & Blog of the Day – No. 4 In the Autoimmune Lane & Slightly Off Course" (4)

  1. Elizabeth said:

    Have you ever noticed that about a week prior to Benlysta infusions you start to feel icky again? One of my BF’s noticed that each month I start to hurt and swell more, I get extremely depressed and very kranky. Have you ever experienced this?
    Thank you

    • Elizabeth: Thanks for your comment, it is a great question!!

      Short answer? Yep!

      Long answer? It happens every month. Why? Because the little Blys messenger proteins that our stem cells produce are starting to build up again (after Benlysta killed them the month before) and they start doing their evil “stuff” again.

      The problem in lupus is that there are so many of these Blys messengers, that they crowd around the B-cells and confuse them – as if they were a throng of crazy people screaming at them – and the poor bombarded B-cells get so confused they start making lupus antibodies in huge numbers that go out and attack our cells again.

      If the Blys guys are gone, they B-cells don’t go crazy and make the antibodies. In people without lupus there should really be no ANA antibodies! When the Blys guys come back in numbers, around week #3 after the infusion, the B-cells start getting confused by all the screaming Blys guys around them and just simply start “freaking out” again. Just like you, about 3 weeks after my infusion, I start getting inflamed sore joints, more deep bone pain, neuropathy in my legs starts overpowering my Neurontin meds and my CNS symptoms start showing up again.

      That is why Benlysta in not a cure, or a lasting remission triggering med, it is long-term maintenance drug. However, it is a drug that allows the rest of my body to get healthier while the Benlysta keeps the Blys guys under control, and the increased body health over the long term has helped me have less severe lupus symptoms. 21 months into treatment, I am overall in a much better place.

      But, still every 3 weeks I get reminded that lupus is hiding out, waiting in the wings to come out and take over the stage again. So, I am extra attentive and pay extra care with rest, etc. if I flare during that last week of the month.

      The less we flare, the less we flare. Period!

      LA

  2. butudontlooksick said:

    Hiya LA, I love love love the new series of lupus bloggers you have coming out. Just wanted to say GREAT JOB and SUPERB IDEA!!!!!!.

    I make lupus music videos when I can to help create lupus awareness..I attached the links in case you want to share them with anyone. The Lupus Pals video uses the song, “You’ve Got a Friend” by Carole King WITH permission. That was very exciting!!!

    I’ll put my blog addresses on the bottom too. If it’s ok I’d also like to share some of lupus friends videos. 🙂

    My Lupus Music Videos
    My lupus youtube channel: http://www.youtube.com/user/jujubeee714?feature=mhee
    11 criteria to dx lupus: http://youtu.be/iNiXZFmHx-g
    Lupus pals video: http://youtu.be/nuQW8zMkKN4
    Lupus pals qt for apple ipads: http://youtu.be/n8A-8xClIdo
    My Lupus video: http://youtu.be/7CyhNS8tLOM
    Malar Rash: http://youtu.be/M8OQbHkofIY
    Headaches: http://youtu.be/1jdeExzKkx0
    Discoid rash lupus: http://youtu.be/QVYn1f5YJKM
    Lupus Fatigue: http://youtu.be/foHX-Hp-dE4
    Myoclonic Seizures: http://youtu.be/ATniV0drkC8

    My blog:
    http://butudontlooksick.wordpress.com/
    http://jujuslupus.blogspot.com/

    Some of my lupus friends youtube channels about lupus:
    http://www.youtube.com/user/TalaSmith
    http://www.youtube.com/user/treappling1 I’m sure you know Tremia already she’s had over 100.000 hits on youtube and is THE VIDEO LUPUS BLOGGER ELITE, lol 🙂
    http://www.youtube.com/user/TheAnnamarie49?feature=watch

    Again, thank you for all you do. Your blog inspires others to blog…I know other lupus bloggers are who inspired me to start blogging and making music videos…

    Love and HUGS, Julie

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