Living with Lupus discussion

Henrietta Aladjem

This is one of the many books and stories I have read about a woman diagnosed with SLE. I would recommend anyone looking for a good read about the topic of Lupus because it is short, informative, and inspiring. Give it a try and let me know what you think. My friend's mother mailed it to me and I adored her for it because its not a widely circulated book but a necessary one for individuals with Lupus. Her explanations are not trite and repetitive like most books on Lupus. Its a great read for when you are tired and lying in bed for the day. Its scientific at points and interesting when it discusses Lupus and dogs.

Angela wrote: "Henrietta Aladjem

This is one of the many books and stories I have read about a woma..."

Thanks for the tip on this book. I had a dog that had phemphigus which is similar to lupus.

I was unable to get this book from the library but got another one by this writer and I am learning much. I should have read this book years ago.

In Search of the Sun Revised Edition

Yes. I saw that you have been reading a revised version? Hmmm. I wonder what's different about it. My copy is in NH at my father's house right now. Hopefully, I will be getting it back soon. No big deal however. I think the older one that I have was out of print because a friend gave me it. I like the author a lot. Keep me updated. I already answered some of your questions regarding the book. Cool.

Angela

Angela wrote: "Yes. I saw that you have been reading a revised version? Hmmm. I wonder what's different about it. My copy is in NH at my father's house right now. Hopefully, I will be getting it back soon. ..."

I still do not have the right copy up but I did get this one from Colorado Springs library system so you can get it too. The cover is bright yellow with red lettering. I just can't get this one up but they are probably similar.

Thanks for doing my questions. Today was very rough due to the six percent humidity.

So I take it the humidity is something you look forward to? See it bothers me. I like it cold and dry.

Angela wrote: "So I take it the humidity is something you look forward to? See it bothers me. I like it cold and dry."

Oh, no, I lived in the San Antonio, TX area for 19 years and I was sicker there than anywhere except FL due to the constant 90% humidity. My lungs are super picky. They like about 40% and act up if its too high or low. I had asthma in the wee hours and couldn't wake up to get a pill. It was horrible.

Hi, I'm Carol, so glad to meet you.

I was diagnosed with SLE and Sjogren's in 1998. Not much available (support groups) where I live. I did a lot of reading to find information. Physically I have been through a lot & I'm on my 4th rheumatologist. Just saw her today and doing very good. I did have antiphosilipid antibodies for 10 years (was on Coumadin) but thank God I tested negative from Jan. to June, so it's gone & I no longer take it. I eat organic food, exercise, avoid the sun, not employed/on disability, I try to stay stress free, avoid drugs (especially Prednisone) as much as possible.

I can't do dry because of Sjorgens (I have 2 plugs in each tear duct) and I used to hate the cold in the winter because of the Coumadin but I will probably like the winter since I'm off it and having hot flashes (I'm 51.)

Hi Carol, I also try hard to avoid Prednisone as I caught CFIDS while I was on it and my life was never the same again. I may or may not have SLE, one doctor tells me I do and another one that I doubt. I have also been told Sjogern's. My latest autoimmune diagnosis was rheumatoid arthritis but oddly enough a hornet sting seems to have helped that. I had heard it could but never believed it.
I was diagnosed with Sjogern's in NM which is even drier than here in Colorado. It seems to affect my eyes and mouth most but also my heels sometimes. I really need to get a book on it and read more as I know so little about it.
I am 62 and the oldest Twilight fan!!! Alice

Hi Alice! I was in excrucitating pain and physically exhausted when I was diagnosed and my blood tests show my numbers were through the roof. (I was a work-a-holic.)

I have visited Sedona (beautiful) and Las Vegas, and it was way to dry for me!! Regarding the Sjogrens, my hospital tests came up as "0"-- my eyes burned, couldn't get enough with eye drops so plugs were the solution. I still use ointment at bedtime. I've lost a lot of teeth (no saliva) so I am always drinking water and rinse with Oasis, and vaginally is a major challenge -- only have topical treatments plus going through menopause, makes its even drier.

My blood pressure was sky high when I was told to quit work due to lupus. I also had pain but the heart blood pressure thing was worse then. I have used steriod eye drops which seem OK and I use Biotene. I have only lost one tooth so far. Like you I often hold water in my mouth or rinse with Biotene. I will have to check out Oasis. I have severe candida now so that actually helps the vaginal dryness. I went thru menopause years ago. I had surgery but kept one ovary as hormones make me sick at my stomach. Thanks for the info. I had never heard of eye plugs. I get black lines in my vision some mornings which I think is due to dryness but not sure.