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Weve Arrived guys...Venus Williams article/Sjogrens in New People Magazine

Started by gurs, December 31, 2011, 10:25:10 AM

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gurs

Just picked up a new People magazine today (January 9th double issue) and it has an article about Venus and Sjogrens.

Excellent!

Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

Jellyb

Thanks Gurs, I am heading to the store today I will pick up a copy

susanep

Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

Katybarstool


ohiolady

My daughter just told me about the article.  She said it talked about the fatigue and also how we look fine on the outside and people don't realize how badly we feel.  I'm sure sorry Venus has to deal with this at such a young age.

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 62

DragonflyC

Very exciting!

I feel terrible for Ms. Williams, but the press is certainly great for us.

I've been reading a lot about Venus Williams (and about Stephen McPhail, an Irish soccer player who has Sjogren's). The best article I've run into so far is written by a woman who actually has Sjogren's and writes frequently for Yahoo: http://sports.yahoo.com/top/news?slug=ycn-10732943

annken

yes, i believe she spoke of her arms feeling like cement blocks, pretty good one that when trying to wield a tennis racket, she looked drop dead wonderful in the picture, her diet is extreme and wonder how people feel on this vegan diet and no red meat etc.
its all a worry how people try to find ways, but then if nothing else is proving so good i guess anything is better than say, chems etc.

eyeamdry

Gursie, I tried to post this awhile ago but my darn computer wouldn't work.  I did see that you wrote the most important things on here.

I was thrilled when I saw the article was in the magazine.  Mine comes through the mail, so I didn't "pick" it out.  I thought the article was interesting, well written, written with Venus as the subject.  It will be an easy but important read for others who take the few minutes to do so.  Venus is an important person and people will follow this.  Before, no one knew what "it" was, at least it is being talked about in the press.  Two articles that we know of in the past few months re: Venus.  Get well Venus and keep SJS in the limelight.

gurs

No way I could do a raw diet...my only joy in life right now is eating (or trying to anyways)? ha ha...but, im going to try and make some major diet changes too....no gluten, cut down diet pop, etc..I cant eat much because of the gastroparesis.

I wonder what med's she is on? prob plaquenil?

Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

valene2009

im trying a new diet..not a total raw diet tho.. i eat oatmeal fruits veggies, eggs and salmon, shrimp, etc.. also beans and almonds.. almond butter.. it is hard but she is prob being way stricter i dont know.. i have only been following it for 4 days.. its tough--i didnt realize omega 6  is in everything including eggs but i am cutting down on them..

gurs

My gastroparesis wont let me eat all those raw veggies and i def cant have oatmeal. I find that fiber makes my tummy even worse. I miss it so much..and cereal with milk. Im also finding that i feel very ill after dairy, so im avoiding that too..its nuts...cant have much anymore.
I have been eating more fish and eggs, which i love ,and is good for me.

Anyone notice their tastebuds are almost gone..nothing tastes good and is very bland. When I try to eat something with more flavor, the spices burn my mouth and upset my tummy. I cant seem to taste anything anymore either..bummer

Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

valene2009

yes.. my tummy doesnt get upset but my tastebuds have really been gone over the years.. i think that is why when i pick up a candy bar or something sweet i cannot stop... i have been avoiding that lately as i think the sugar made me feel worse-particularly my dry eyes and mouth.. the jury is still out on that one... time will tell.. 

i also notice that i love peppermint gum but most days i have to change it out constantly as the taste wanes fast.. i dont know anyone else who changes gum like i do every few minutes sometimes.. lol.. its better than smoking right?  lol

valene2009

it says she is on a "raw food" diet but i also read she is still eating wheat-like mushroom burgers... as i said before all these diets are so confusing .. a lot of these diets say to stay away from wheat as it can aggravate sjogrens.... i really dont think there is 1 complete diet to "eliminate" all sjogren's "triggers".. what doyou guys think??? i think its prob trial and error-and like many have said diet doesnt affect everyone wtih sjogrens--i understand those with IBS, Candida and Celiac but those with sjogrens alone i wonder if it does... i am still eating super strict.. i did allow some oatmeal this am but could only eat part of it-i get so full and dont enjoy the taste much... i would love a big bowl of yummy cereal. lol

DragonflyC

Valene,

I think you are totally right. This disease is a little different for each of us, and what helps is probably unique to each of us, too. I don't really seem to have any food triggers, myself (gluten, spicy, sugar, fiber . . . no major ill effects from any of those), though I try to avoid soy because of my thyroid problems.

--C.

eyeamdry

I doubt if any of us, except Venus has a dietician and chef on hand to meet her every need.  Sometimes I'm lucky if I can snarfle down a peanut butter sandwich.  Venus will have the best of everything.  Who knows, we may learn more about Sjogrens from her.  I doubt if eating a "raw" diet or "vegan" diet is the SJS cure.  We all have to sort of work around with what works with us.  I could write Venus and offer to stay with her for a couple of weeks and see what I can learn from her and vice versa.  lol.  My idea.