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Sky

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Posts: 56
 #1 
I just recd a notice from Michigan Lupus Foundation regarding a symposium on June 3, 2017. Will be held in Detroit. (I live outside of Detroit, 45 minutes away). Dr Wallace will be speaking. There will be
Break out sessions, one on one communications, vendors etc. I may have one of his books? I'm signed up. The last type of symposium I went to was probably 30-years ago. Wondering who is familiar w/this doctor and if I would get a chance to ask questions and you had a chance; what would you ask?? What would be your main objective and what would you say in your frustrations with autoimmune diseases??
Anyone want to come to the motor capital of Detroit???
Sky

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Posts: 56
 #2 
I've been trying to stay away from researching autoimmune diseases but it's been difficult. Having the dx of a systemic disease, lupus nephritis (lupus) in 1980, I didn't think much about cause and effect. I have to say that I just accepted it. Well, at times. Spent most of those years sleeping due to fatigue. This is not related to the above mentioned doctor but related to a text from my daughter regarding a Dr. Terry Wahls. The web site put me into her book, and her research regarding how nutrition etc can help w/autoimmune diseases. And a testimonial from a patient dx with M.S. Which, I could not get into, website knocked me out. I have a very old iPhone. Well I threw off the handle w/my daughter; texted her with "I was dx in 1980 and so I'm assuming my diet put me in renal disease. I mentioned that I'm checking into genetic testing so no one in the next generation would have to go through this disease. She's aware of my visit to U of M and what the rheumy had thought which was I (Don't have lupus)... ??? But some sort of CTD
I get along very well w/ my daughter. She knows what it was like for me to come home from work at 5 pm and sleep either for an hour or two, or until the next morning. Which increased throughout the year. I was totally drained when I got home and I went to bed until the next day. What A Life.
Her text came at a very bad moment as I'm trying to deal with IRS and paying my bills. Trying to stay in my house, etc.
Think I'm slowly given up on my life. What's the point. I tried so many times to be strong; it's getting to the point that I can't do it anymore.
You can look up this doc by google.
Dr Terry Wahls if interested in her info.
Can't copy and paste due to my extinct iPhone. I get locked out.
wings65

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Posts: 319
 #3 
Dr. Daniel Wallace is the author of "The Lupus Book: A Guide for Patients and Their Families" (I think that's the name). You can find this book at Amazon. Wish I lived close to Detroit, I would love to hear him. Hopefully, there will be a Q & A session where you can ask questions and, perhaps, get an update on Lupus and current research (if any).

Your second post have me concerned. A lot of us are, or have been, where you are now. The key is to take one day at a time. You might be thinking "easier said than done," but that is what we do because what is the alternative? I'm assuming your daughter is an adult? Perhaps you can share your concerns with her or someone else who you're close to and who has your best interest at heart. We, as mothers, oftentimes don't want to confide some things to our children because we don't want them to worry. Sometimes, just talking to someone can alleviate some of the stress we're under.

I wish you the best.
Sky

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Posts: 56
 #4 
Wings65, thank you for the encouraging words. I had an awful week; the wall just closed up on me. Lupus is one day at a time as you mentioned and I needed to hear that. I can be extremely hard on myself. I apologized to my daughter re: the text she sent. I know it was not intended the way I took it. We get along extremely well and I don't tell her if I'm having a bad day or complain about my symptoms. I keep a low profile regarding it.
Like you mentioned; we don't want to confide something's and your absolutely right.
Thanks for your support. Hope all is well with you.
RufusRick

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Posts: 8
 #5 
Dr. Daniel J. Wallace has written and collaborated on numerous books, "The Sjogren's Book," "The Lupus Book,"  "Making Sense of Fibromyalgia," being the more well known among lay people.  He has also authored numerous text books on rheumatology for medical school rheumatology classes.  He is one of the leading experts on rheumatological disorders.  I wish the average rheumatologist knew half of what he knows.
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