Old timer and newbie/both

Welcome Greetings and Introductions
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Hello. I’m new here. I’m in my mid 50s. I’ve had an on and off career in public relations, journalism, teaching and counseling… my health has pretty much caused many changes and recently, I think I’m DONE!

When I was in my early 20s I had some fatigue issues when suddenly, one day, I woke up with horrible arthritis in my fingers. I recall struggling terribly to get to work that day. My health only worsened from there, with very bad body aches, very bad arthritis in my hands, low platelets, crazy migraines and off and on protein in my urine. I was dx’d with Lupus and put on lots of prednisone. For a short time, I also took Plaquenel.

I had many BAD years…at least 15 of them. It was hell. Then I had a reprieve of sorts. Still had some platelet and fatigue issues, but not as bad and the arthritis pain was much better.

However, a few years ago, I went through some unbelievable stress. My father was dying, had big problems at work, and a dentist make an error in my mouth causing permanent SEVERE pain in the Trigeminal nerve, and finances were a bid of a concern…just craziness from every angle.

Next thing I knew, I had some fatigue, and dry mouth and dry eye. Some minor body aches too. I went to my rheumy and was dx’d with Sjogrens Syndrome. A few appointments and a blood test later, all my lupus tests are now positive again and my platelets are about 50,000.

Knock on wood and crossing myself, my meds for the severe nerve pain might be keeping the lupus and SS stuff in check. I take Baclofen, a med like Elavil called Desipramine and use a special cream on my face (long story). I also have Percocet for breakthrough pain.

I don’t know if this has been discussed here, but after I found out I had SS and now Lupus again, I went on a strict diet. No flour, little to NO sugar, lots of veggies both raw and cooked, moderate amounts of animal protein, reduced dairy and only organic.no junk food. I swear this diet helps with the fatigue and pain.
Ironically (maybe this is why I decided to post today), yesterday we went to a friend’s house for dinner and I drank wine and had dessert. Today, I have sickening fatigue and body aches…I have been sitting in a recliner chair all day with a heating bad.

Has there been any discussion on diet, alternative treatments, foods to try or to avoid, etc? Anyone know of any good books or have any experiences in this area?0

Thank you for listening to my story. Good wishes for a happy and pain free day. I know this stuff is VERY difficult.

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I, too, was a journalist until about a year ago when my lupus and interstitial lung disease forced me to turn to disability, where I reluctantly remain. I experienced a large number of the progressive symptoms you discuss over the last five years since being diagnosed. I have been able to keep the lupus under control for the majority of the time with prednisone and hydrochloroquine, but interstitial has no cure and it is far and away worse than lupus. I am down to 30 percent of my lung capacity and can do little in the way of physical activity anymore.

Maybe we could talk about our journalism careers. I was a sportswriter in Knoxville, Tennessee for years at local paper and for Associated Press. Later took job with a trade publication for the coal industry.

Tell me about your past work if you like.

Thomas Franklin

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I have mixed connective tissue diease ,i cant take alot of the normal meds,they dont agree with me,they make me worse,so i had to try other ways to keep it under control,so i do so with my diet,and yes i have good results,i dont eat any preseratives or artifical flavoing,and i eat as much organic as i can,and i try not to eat alot of sweets,but so far its working good.if u look on the internet,i have found diets for lupus.good look and keep me posted

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Hi! Welcome to the family omnline of Living with LUPUS !!!! Hope that you enjoy and that you enjoy reading /asking questions (even if you think they sound crazy and you don't want to ask them-do it any way smile)/ or just to VENT we are here for it all 24/7/365 days okay just log in and go for it ....Beverly L.

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Hey Nomad I have found a diet of fruits veggies and lean meats with a sprinkling of dairy does me best . I get organic whenever I can and avoid gmo foods when I can. I don't drink soda or eat fast food unless it is soup. Hope that helps Oh and I am drinking 8oz of organic tart cherry juice to keep the pain and inflammation down. Welcome ,God bless Julie

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Thank you everyone.

Thomas…Your career sounds very interesting and I’m sorry to read of your increased symptoms and health heartaches. My work life was very eclectic. I worked in PR, mostly writing and editing newsletters for various companies, including The Chamber of Commerce. I then worked as an assistant Editor at a Parenting Magazine. Then, I did some freelance work. Very long story, but I later did some teaching and counseling work. So, not a “true” journalist, but I did enjoy writing. I have a BA in PR, with a heavy concentration in Journalism and I have a MS in Mental Health Counseling.



Julie, Beverly and Forever Hopeful…many thanks too. I can’t take a lot of meds either. Prednisone gave me a bad retina problem in one eye, etc. I do find that I need to vent at times, we went out Saturday, and Sunday, I could barely move! I strongly suspect diet aids a little with pain…and every little bit that helps brings a smile to my face!!! :slight_smile:

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Hey Nomad,

A BA in PR and MS in mental health counseling is an interesting mix. I did primarily sports writing, but also ventured a little into other areas when needed. I ended up working an enviable job as a writer for a trade publication for the coal industry. We had a super laid back office environment, and I got to take some really nice business trips, including a week in Paris - all fun paid for by the company!

But then came the sobering slap in the face called lupus. Oh, don't forget lung cancer (which I got rid of with six months of chemo), interstitial lung disease and four fractured vertebrae. Now I am on disability and hating it! Would love to keep working, but just can't do it. I still love to read, so that helps, particularly with so much time on my hands. Hah!

I try to maintain a positive attitude despite the cards I have been dealt. It helps to be able to discuss your personal issues related to illnesses on this site, so keep in touch.

Thomas Franklin