Might want to read this book

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Regular Member

Date Joined Feb 2005
Total Posts : 25
   Posted 4/28/2009 7:20 AM (GMT -6)   
Hi everyone,
I haven't been on the site much lately. I wanted to recommend a book I just read. Dancing at the River's Edge (A Paient and her Doctor Negotiate Life with Chronic Illness) by Alida Brill and Michael D Lockshin MD. I was diagnosed with lupus 5 years ago and most lupus related books I have read dealt with the newly diagnosed. After you have read everything you can possibly find and you understand your disease almost as well as your doctors you still have to cope. This book gives you a look at dealing with this forever disease.
On a not so upbeat topic, I was just diagnosed with breast cancer yesterday. I found a lump about 6 weeks ago and after a biopsy they confirmed it was malignant. Now I have to have further testing to see if it has spread and then we will talk about treatment. In my mind I guess I never thought I would get breast cancer since my immune system fights everything else.  They say God never gives you more than you can handle. This will do just fine, thank you.
I have been participating in the trivia quiz everyday and they are so much fun. Thanks for organizing that. Christi

Diagnosed with SLE 10/2003, Reynauds in 2005, Sjogrens 5/2008 Currently taking 1500mg dose of cellcept and plaquenil along with a whole list stuff.

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 4/28/2009 10:03 AM (GMT -6)   
Hi Christi,
Oh dear, I am so sorry about your breast cancer diagnosis. It's so difficult to understand why we have to suffer with so much.  Lupus is enough, but to add bc to the mix just seems out of the world cruel.  I'm so sorry.
When you're ready, you might want to visit the breast cancer forum here. Please keep us updated on how you are doing, okay?
The book you recommended sounds very good.  I think the coping process for us is extremely difficult. I was diagnosed 9 years ago, and I'm still having a very hard time coping and adjusting.  Thank you for the book recommendation.
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
Co-Moderator for the Lupus and Fibromyalgia forums

Regular Member

Date Joined May 2007
Total Posts : 474
   Posted 4/28/2009 10:16 AM (GMT -6)   
Christi, Thank you for the book recommendation. I will have to check it out. I am sorry to hear about the bc diagnosis. That stinks. Stay strong and please let us know how you are doing. You are right about the tivia quiz - somedays I can't even think straight, but that quiz gets me to at least TRY and focus! Not always well, but, hey, any little bit is something.
Hope you feel better.
Take care,

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR.
Daily Supplements: Calcium, B-100 Complex.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.

Regular Member

Date Joined Feb 2007
Total Posts : 102
   Posted 4/28/2009 6:19 PM (GMT -6)   


 Hi Christi,

  I plan to look for the book also.  I'm so sorry to here about your diagnoses.  I had breast cancer 7 years ago and I had the surgery, went through cemo. and now I am cancer free but I'll have to tell you that I have suffered more from Lupus and RA than I did with the cancer treatments.

    You  will be in my prayers, Hugs, Linda


Lupus, RA, OA, Raynard diseases, Hypothyroidism and a Breast cancer survivor.
Meds. Plaquenil,Synthroid,Lexapro,Mobic,Hydrocodon5/500 for sever pain.

Forum Moderator

Date Joined Jun 2008
Total Posts : 1469
   Posted 4/28/2009 6:32 PM (GMT -6)   
Hey Christi,
I am gonna jump on ebay and see about that book. thank you for the recomendation. I have been trying to find and collect books about lupus/chronic illness.

So sorry about your diagnoses, you will def be in my thoughts and prayers!



21 years old...Systemic Lupus 11/07, lupus nephritis 01/09, raynoids 03/08, Carpal Tunnel 03/08

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 4/28/2009 9:10 PM (GMT -6)   
(((((((((( Christi )))))))))))) So sorry to hear your difficult news. I hope the gals at in the breast cancer forum will have some great info and support for you!!

I'm glad you are enjoying the trivia challenge!! I haven't played in quite a while. Maybe I should start playing again.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Veteran Member

Date Joined Jun 2008
Total Posts : 669
   Posted 4/28/2009 10:07 PM (GMT -6)   

Christi - Very sorry you have yet another battle to fight!  It just isn't fair.  I checked the library for your book recommendation.  Wasn't there, so it's on to Amazon.  Really appreciate the suggestion.  Hope you find all the help and support you need through this. 

I love the trivia challenge, too!  The interaction makes it more fun than the crosswords - it just doesn't take as long.

Blessings to you!


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn

Regular Member

Date Joined Feb 2005
Total Posts : 25
   Posted 4/29/2009 3:04 PM (GMT -6)   
Thank you all for your kind words. Christi
Diagnosed with SLE 10/2003, Reynauds in 2005, Sjogrens 5/2008 Currently taking 1500mg dose of cellcept and plaquenil along with a whole list of stuff.

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