Just picked up a new People magazine today (January 9th double issue) and it has an article about Venus and Sjogrens.
Excellent!
Gursie
Thanks Gurs, I am heading to the store today I will pick up a copy
I will also get a copy when I can.
susanep :)
Please will you post a link if it goes online?
Kathyx
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
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
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.
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.
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
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..
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
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
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
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.
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.
She is pretty young as well....my SS was pretty manageable until I hit the 30's, then every year after that, things grew progressively worse.
Now, I almost 48 and things are a nightmare, and Im guessing hormones play a huge part in all this....for me anyways.
I'm sure she is seeing the top rheumies too...I wish they would get into what medications etc they are on or have tried. Most of them dont
do that though?
Lets hope she can bring some awareness to this and will champion for some research etc.
Gursie
Quote from: gurs on January 03, 2012, 04:07:54 AM
I'm sure she is seeing the top rheumies too...
Gurs, I'm sure she must have good specialists now. But from what I've read, Venus has done her time on the Sjogrens diagnostic merry-go-round just like the rest of us.
i love that idea Lucy! ha ha.. that would be great. well i am trying a "diet".. the only carb besides veggies and fruits i have had is oatmeal and i cannot stand the taste of it anymore. i dont know.. im basically eating fruits veggies, sweet potatoes and all kinds of good fish-unbreaded or fried of course.i even stopped eating mixed nuts out of the can cause i noticed they has cottonseed oil in them.. i bought some raw almonds--not as tasty at all. i eat an occasional egg and egg whites a lot..
time will tell. i am hoping i can do this for about 4 months.. i know that is what they say you have to do.. i guess i am kind of eating "raw".. except i have to get more protein then just from beans... i wonder what else she is eating for protein since athletes need more.. i also wonder what we will hear about her in the upcoming months... it would be great if this led to more research on sjogrens (not great for her) but you know