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| Iris Carden |
I'm a Uniting Church minister (retired through ill health) and a former journalist, in Australia. I have a bachelor's degree in journalism and literature, and a master's in theology.
I was diagnosed with lupus in 2006. I'd had lupus symptoms on and off throughout my life up to that point, but no-one had "connected the dots."
In May 2011, when International Lupus Day happened, I joked that the best way to celebrate Lupus was with a handful of painkillers and a long nap.
Sometimes, it is Lupus is an attempt at something more constructive - helping to create awareness of my condition.
I started with the Blog, what you find on the "Home" tab here.
The Sometimes, it is Lupus Facebook Page, the Sometimes, it is Lupus Google + Page and the Sometimes, it is Lupus Pinterest Board (along with Lupus Book, and another book I'm working on now) have grown from that.
The Lupus Business Directory has also grown out of that as a way to help promote businesses owned/run by people with chronic illnesses, as a means to help us help ourselves.
More recently, as a project for World Lupus Day 2013, The Warriors' Wall was established, as a means to allow lupies around the world to share what they'd like the world to know about lupus.
I'm divorced, a single mum of two, now adult, offspring who are currently both full-time students. I also live with assorted animals - and if you go across to the cat's blog, you can get to know all of them through the cat-it-orials.
While you're here, I'd love to hear back from you. Just click the "comments" section after any of the posts and tell me a bit about how and why you came to this blog, and if there's anything you'd particularly like me to talk about. If you want to contact me directly, my email is iris@sometimesitislupus.com .
Dear, Iris:
ReplyDeleteI have enjoyed reading your posts and how you give practical advice to others who suffer from lupus about topics that many doctors probably never touch.
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
Hi Donald, I'll email you.
Deleteiris, would you contact me, by filling out the 'contact me' form at http://lupuscronicles.com ? Annie
ReplyDeleteHello
ReplyDeleteMy name is Chelsea Stark I was recently diagnosed with Lupus.
I have been looking online for other people who are living with this invisible companion called Lupus. So I can add their stories and think you better improve their day-to-day today.
I started two blogs titled Lupus My invisible Companion. If anybody wants to reach out to me here is the link to my main blog http://chelseastarkcom.blogspot.com/ and you can leave a comment.
Looking forward to hear from anyone.
So if you are interested please reach out to me. I would loved to turn this blog into a place for all of us to share. And place that we can learn from one another. My mother and grandmother all have lupus. But not very many people have someone to talk to that understand what you go through every day. And I think this is the most important reason why I started this blog. Those who do not have family members or friends that have lupus need someone to chat with. So come here and chat with me. I will listen and help you every way I can.
I know some people may only have wordPress or blogger so I want to make sure we cover everyone. I will make sure that majority of the post I do on Word Press and blogger are the same postings so everybody can get the same information. I would love to speak with you if you're interested.
Thank you Chelsea
Here is the links to the blogs.
http://lupusinvisiblecompanion.blogspot.com
https://www.tumblr.com/blog/lupusmyinvisiblecompanion
https://lupusmyinvisiblecompanion.wordpress.com
Hi! I would love to be on your warrior wall. I have been a warrior for so long my website is called Wellness Warrior as well as my book. After 4 rounds of cancer and 2 autoimmunes, I earned the title. Life is about thriving and learning. My website ishttps://wellnesswarrioronline.com/blog if you want to check me out. Thanks
ReplyDeleteHi Lisa, please send your photo, and details to me at iris@sometimesitislupus.com for inclusion on the Warriors Wall.
DeleteIris: thank you so much for your blog. I was diagnosed today with Systemic Lupus. I've had a rough past 16 months. The disease targets my CNS and joints/bones. I had to have a spine reconstruction surgery this past February. I have a laundry list of diagnosis from the past several years that can all now be attributed to the SLE. My question is about the sulfasalazine. You mentioned it in your posts briefly from June 2012. I found it on a google search. Can you tell me how it worked for you? My doctor wants to do a combination sulfasalazine and plaquenil - but is having me build up on the sulfa drug for the next four weeks before starting the plaquenil. Did this regimen continue to be success for you? I've read online how sulfa drugs can cause drug-induced lupus and I'm afraid to take it now. Any help would be greatly appreciated. I am in the midwest, USA. My email is gamegirl151@gmail.com and my blog is Letters Landing - Spine Guardian.
ReplyDeleteHi, Sulfasalazine was designed for Chron's Disease, and I think it works on gut inflammation. I know that when I'm taking it, my gut symptoms are better, and I can even get away with eating small amounts of gluten without the dramatic ill effects. I don't know if it does anything else, because really, what I notice is the overall effect of the drug cocktail.
DeleteI think the thing about sulfur drugs is about about sulfur-based antibiotics.
I do know that sulfasalazine is a fairly standard drug for lupus, and I doubt it would be used like that if it was likely to cause lupus.
You're going to read all kinds of things online. Not all of them are reliable. If you're worried ask your rheumatologist - you pay an expert, you may as well get your money's worth.
At the moment, we've taken away my plaquenil, to see what I can go without. I tried a trial without sulfasalazine for a couple of months, and my gut just went beserk, so I have it back now.