I have had SS for over 20 years now, when I first was diagnosed with it, it was very dilbilitating for 3 years, didn"t get out of bed for about 2 years, couldn't hardly eat and lost about 6 stone, so tired going to the toilet was a mission, never went any where or did anything but I sort of went into remission for quite a few years, for about another 10 where I had no real side effects from it and felt great , But now I am really feeling it now, you can go into remission for some years, this will only last so long for her as it did me, and then the effects will take its toll on her, sooner or later.
I am sorry to hear that you have had such issues. I know that I cannot count on the fact that I will feel as well as I do (under the circumstances). I know that it is inevitable. In the meantime, I am living life to the fullest...but also planning for the time when I will not be doing as well.
I did not want to downplay anyone's situation; I just did not think that Venus makes it look that the disease is not serious. I agree that we all have to plan for that day when we cannot do as much. In the meantime, I am trying to live to the fullest...mindfull and thoughtful, one day at a time...and I am sure she is too.
exjbnz said:
I have had SS for over 20 years now, when I first was diagnosed with it, it was very dilbilitating for 3 years, didn"t get out of bed for about 2 years, couldn't hardly eat and lost about 6 stone, so tired going to the toilet was a mission, never went any where or did anything but I sort of went into remission for quite a few years, for about another 10 where I had no real side effects from it and felt great , But now I am really feeling it now, you can go into remission for some years, this will only last so long for her as it did me, and then the effects will take its toll on her, sooner or later.
Iabarbosa…you are dealing with so much! What symptoms do you have when your parotid gland gets infected? Does it swell? I’m so sorry to read of your cancer dx. Do you think SS makes us more prone? I know there are concerns about Lymphoma. Do you use an integrative doctor? To me, this seems like such a potentially helpful way to go…but they don’t seem prevalent in my area. You have such a strong and beautiful way of looking at things. For me, I’m grateful that Venus is trying to promote (for lack of a better word) SS, but I do see the potential conflict. I also saw for myself, her futile attempt to explain that there was more to the illness than dryness. I DO wish if she has some scientific evidence backing to that diet, she would share it with us SS patients. What are the main changes you’ve made to your diet that have been helpful? Again, love your demeanor. 
Lately, my own health has been a bit tricky and it has made me more appreciative of good days…and yes, to live life to the fullest. And, I’m no longer even tempted to eat sugar, etc. sorry so many questions. So glad you are doing well…
I am sorry too to hear about your cancer Labarbosa, I know through my own research that SS That you can have more of chance developing a certain type of cancer so sorry that you have to battle with this, I am thinking of you
Venus Williams is a vegan and through my own life with SS I believe diet is the most important thing we can do for out bodies, not to eat sugar, not to eat diary, I have a very limited amount like if I am out I will have milk in a cup of tea or coffee for a treat but try to avoid it altogether , I do not eat glueton, I have a very limited amount of meat, I will eat fish, but choose to eat meat once per week because of the ,iron it is something I have been lacking lately And I have found eating this way I have felt a lot better through the years probably more than other people,, because of my diet I have been extremely strict on my self, and feel better for it,
Thank you xjbnz !I too feel/sense diet is extremely important! I’m desperately trying to piece together an excellent diet for myself and animal protein is still a bit of a questiOn. Right now, I seem to need it because I just don’t lose weight without it. I hope to cut back to perhaps three portions total per week when I get to goal weight and add even more vegetables and low glycemic fruit. I keep on experimenting and this time will keep weighing and observing my weight and how I feel once I get to goal weight and make a few changes. I don’t think I wish to be a vegetarian, but see a benefit in reduction Of animal protein. How nice to read that after twenty years you are basically not on meds! Awesome!!!
Thank you for your support. As part of my treatment at Memorial Sloan Kettering, I am going to see an Integrative Medicine doctor. Hopefully, this will help in my overall treatment. I am also looking at ways of handling my almost chronic parotid inflammation. I continue to look for ways to improve my day to day experience. I think that diet makes a difference. I have noticed that when I follow an anti-inflammatory diet that I feel better. I am not sure that there is a one solution. I think that we have to listen to our bodies and what makes sense.
I believe that we do have ups and downs. I think that the fatigue is the one issue I struggle with as well. Since I started working only 40 hours per week it has made a difference. (Yes, I was used to working 60-70 hours a week...that I cannot do any more.) So if occasionally I work 50 it is OK. I also do not make it very public that I have SS and try to work through. Work environments are not such that allow for room to be sick. I understand if she does not want much to be public. You do not want your disease to define or limit you. But everyone is different.
Again, I thank everyone in this forum. The discussions are always very insightful.
Exjbnz…is the majority of your diet made up of vegetables? Cooked, raw or both? I’m doing both and I sense it is helping my energy.
I do cooked and raw whatever I feel like really, but I do have one rule if the sun does not grow it don"t eat it, apart from I have pasta once per week with no clueton, and fish twice, and meat once per week, the rest is fruits, vegetables, nuts,I have to say that having SS for twenty years back when I got this, there was not a lot of information on it and and we did not have a computer back in the day, I have done a a lot of research into food and have found this diet to be the best for me, hence 20 years on and no medication, there is something in this, I do have a gel that I rub into my sore musles Although I did have to give up work a job I loved because I could not work 40 hours per week anymore, although I am not working at the moment and have not for nearly 2 years When I feel better getting over a bout of phumonia I would like to go back to work for a couple of days a week,I could handle that
Iabarbosa…yep, work environments don’t seem to allow room for being sick. They can be unforgiving places. And I agree about how there might not be one solution re diet for everyone. But, for me it’s been helpful seeing what others are doing and seeing the research re anti inflammation diets, etc. thank you so much for sharing. So wise re not letting our health problems define us.
Exjbnz…I too could no longer work forty hours and this was a very hard decision for me. Lately, my problems are such, I’m not sure I could work any regular hours at all. But, I’m at peace with it of late. Every hour that is a good one, I’m thrilled. And if diet helps, as we believe it does, I’m more than willing to work hard at finding the right diet. Thank you for your helpful, positive and encouraging input!!! Awesome!
I can relate to Venus' story. I first developed symptoms at 20 and was diagnosed a couple months after my 21st birthday.I have to say the diagnosis initially derailed my life. I had to take a quarter off my senior year of college. I looked completely different because of prednisone. I physically wasn't capable of moving at my worst.
I have been so fortunate that there is a combination that's been working for me. I would read the stories and just felt terrified that my health was just going to deteriorate. It was awful to think my life was over at 21. I found a lot of encouragement when my dad shared Venus' story with me. I have been able to get much better and know that many people do not have the same fate.
Currently I my SS is made much more manageable by the medicines and the doctors. I've made the mistake of treating it as if it were a cold, meaning when I felt better give less attention to taking all the necessary medicines and eating well. I still have trouble grasping that this is lifelong, especially when I don't feel the effects every single day.