General Comments
One Patient's Positive Perspectives
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Lupus, the Adventure Between the Lines 
Comments on: "General Comments" (21)
PLEASE HELP ME SHARE MY STORY!
My name is Toya Terry. I was born in Cincinnati, Ohio and raised there for a short period of time. I was diagnosed with Systemic Lupus Erythematosus in 1995, and then I moved to California. When I first moved to California my diagnosis was changed to MCTD (mixed connective tissue disease). Since my first diagnosis, I have discovered that I have the factor V Leiden mutation, pulmonary embolism, ITP (idiopathic thrombocytopenia purpura), anemia, arthritis, membranous lupus nephritis and possibly fibromyalgia. Aside of that I am the mother of a very handsome and vibrant little boy. My life has been extremely challenging since my time as a young girl. But I’ve managed to make the best of it. I choose to express my hurt, pain and experiences with lupus through poetry. I wrote a poetry book called, “A Piece of Me”. For more information check out my website: http://www.toydeann.com
We definitely don’t get the recognition that we deserve. I’m hoping that you are able to share this with others in hopes that they will better understand our experiences. Please share and like my page: https://www.facebook.com/ToyDeann/?fref=ts
Thank you for your strong stand on your faith and Godly manner in which this site is kept. It is refreshing to have a place with sisters/brothers in Christ. Lupus can tear us down physically, mentally, emotionally and even make us question our faith…we need the love and support of other Christians desperately…and you have given us just that……Blessings and Prayers….Jo White
Dear, Lupus Adventurer:
I have enjoyed reading your posts and like how you add a human touch sharing your experiences with your followers as they can learn from them. I also like how you share your faith, which is so important as we are all in the hands of the Great Physician.
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
Thank you for this consideration.
Donald Thomas, MD
lupusencyclopedia@gmail.com
http://www.facebook.com/LupusEncyclopedia
btw… please feel free to take of the pic of my book, I am not trying to spam your blog by any means….
Dr T
Dr. Thomas, I am humbled and honored by your kind words of support and request for my review of your book, and would appreciate receiving an advance reader copy for that purpose. I post occasionally on a book review blog, http://obsessivebookworm.wordpress.com/, and will publish a formal book review there, here on Lupus Adventures, and provide an email copy to you and any other book sale/publisher sites you request.
Thank you so much for your visit here, and for your affirming support. Please communicate off line with me at lupusadventurer@cox.net about the snail mail or email address you need for sending the advance reader copy of your book. I am looking forward to reading it, and communicating with you aside from my blog persona.
Lupus Adventurer
When I wasn’t looking, you brushed my fingertips. I turned to see but you were gone…I closed my eyes for a second in time and closed my eyes again. when I wasn’t looking, you grabbed my hand…I looked to see, and there was nothing. I was laughing at a party and you wrapped your arms around me,I could not break free…You squeezed tighter and tighter till you took my breath away……and then you were gone again. I told others of your grip on me and they searched all around me, and saw nothing. Then one day you showed yourself, the one who took my breathe away, the one who gripped me so hard, I couldn’t move in your presence. Your face is ugly, your being can’t live within it’s self.. then others saw you, who you were…you are Lupus, you are my enemy, you are my foe…….I shall defeat you, one day you shall never hold me again…
BB: Thank you for visiting my blog, and for your comments sharing this interesting perspective on lupus! You give us something to think about! LA
Brought tears to my eyes – I can so relate to your words.
Whoa…that hits so close to home. When I was diagnosed with SLE in 2006, I collapsed and was rushed to the hospital. Amongst multiple symptoms, my lungs were shutting down and unbeknownst to me they were at a mere 30% capacity! After many tests, it was then that I was diagnosed. Lupus literally TOOK MY BREATH AWAY!! I praise The Lord for letting Benlysta work for me!!!
Thanks so much for finding my blog so I could find yours. 🙂 Following back! I also added your blog to links on my blog. I look forward to reading about your Benlysta adventures as you’re far ahead of me. TY and God bless you abundantly!
Rose: Thanks! It’s nice to find a sister in the Lord out there with lupus. LA
adventurer; could you contact me at anowlin@mac.com? I need to pick your brain!
Adventurer, could you contact me? Annie anowlin@mac.com
Hello Ms. Lupus Adventurer – thank you for taking the time to share your story, excellent facts, and resources. Your message is vital to all those impacted by this disease and provides hope, messages of faith, and education to all. Stay strong!
Thank you for your kind words and for visiting my blog! Have a great day. 🙂
I’m sorry it took me this long to check out your blog–but I’m glad I did! You provide so much information and links to great websites and blogs, that I just wanted to thank you for being a great resource. Also, I’m intensely interested in how Benlysta works for you, so thank you for sharing your experiences with it. One last note, I added you to my blog roll, and then I noticed you’d already added me–that was such a nice surprise!
You have an inspiring blog. Thanks for subscribing. It’s lovely to meet you here 🙂
I am honored to be added to your blog roll! Thanks 🙂
Thank you so much, i enjoyed your Blog so much I’ve added the link into mine. I hope you don’t mind.
This blog is having some major technical difficulties. We are working with Healthblogs.org “under the hood” to try to resolve a problem blocking my access to administrate my blog.
I am posting today as a “visitor” but hope to be able to soon be writing new blog posts again, as soon as the technical problem is resolved.
Thanks for coming to visit my blog, and your interest in learning more about lupus! Have a great day 🙂
SLE is one of several diseases known as “the great imitators” because it often mimics or is mistaken for other illnesses.[6] SLE is a classical item in differential diagnosis,[2] because SLE symptoms are can go unpredictable for years.