Ann, sorry if you took something I said the wrong way. I'm not as ...gosh I can't even think of the word that describes a person who can't think of the right words! (Have to laugh or I'd cry.) Anyway I can't do it as well as you. My brain is slowly recovering from a scary level of low functioning, thanks to Ginkgo Biloba, but late at night r in severe pain, it's not as sharp. Yeah I love Carla too and so glad she's a member here.I think one of the Williams girls who play tennis also has lupus but I don't know how symptomatic they are.There are many videos showing so many lupus fighters, but I guess it's human nature that people (general public) wouldn't understand the accomplishment of a person without a visible loss, as you said earlier.Only we who have been through so much would understand such a poster. I have a couple of friends with Lupus who are my sheroes, they go through one unbearable thing after another, getting toes and fingers cut off, various surgeries, organ damage, and horrendous life situations all at the same time. It all seems too much to survive, but with God's help, they do. One left the site last month, you might remember Jujubeee (Julie Kohler).Another iis the author I mentioned, Katleen S. Lewis.
Pardon Michele? You mean the main page? We can read that but not sure what you mean about joining it.
MICHELE MCNEILL said:
PLEASE JOIN IN THE MAIN ROOM
Venus Williams has Sjogren’s. I think she is playing tennis again after having to stop for a while because of her illness.
Sheila W. said:
Ann, sorry if you took something I said the wrong way. I'm not as ...gosh I can't even think of the word that describes a person who can't think of the right words! (Have to laugh or I'd cry.) Anyway I can't do it as well as you. My brain is slowly recovering from a scary level of low functioning, thanks to Ginkgo Biloba, but late at night r in severe pain, it's not as sharp. Yeah I love Carla too and so glad she's a member here.I think one of the Williams girls who play tennis also has lupus but I don't know how symptomatic they are.There are many videos showing so many lupus fighters, but I guess it's human nature that people (general public) wouldn't understand the accomplishment of a person without a visible loss, as you said earlier.Only we who have been through so much would understand such a poster. I have a couple of friends with Lupus who are my sheroes, they go through one unbearable thing after another, getting toes and fingers cut off, various surgeries, organ damage, and horrendous life situations all at the same time. It all seems too much to survive, but with God's help, they do. One left the site last month, you might remember Jujubeee (Julie Kohler).Another iis the author I mentioned, Katleen S. Lewis.
Yes Ann, you're right. Thanks for explaining further.
I have to disagree with this philosophy. I’ve had this disease since I was around the age of 7, dx’d with Sjogren’s first, lupus a decade later but had all the symptoms long before dx. I do the things that matter the most to me but will no longer push myself to get out and do when I don’t feel up to it. I used to hit the gym every day, body fat percentage was 17, resting heart rate in the 40’s and kept pushing myself to do more. All that did was put me flat on my back for months. I have days where just walking makes involuntary tears run down my face despite the sjogren’s drying my eyes out. My pain is pretty much always a 7 or 8. A 10 on my scale is when I’m in a cold sweat, shaking uncontrollably, about to vomit and purge my bowels and bladder, my vision has tunneled and I’m on the cusp of passing out. Unfortunately I have been in that state more than I would like. Heck, labor and delivery was a walk in the park for me. Opening up my hand with a sledgehammer hurts less than my 10. While I’m glad that you are able to go out and do in spite of it all, I find your desire to inspire us to do the same a bit misguided if not demeaning. I beat myself up mentally enough and don’t need someone else doing it too. That might not have been your intention but to me it feels that way.
One of the Lupus pages on facebook is always posting articles or volunteer blogs about famous athletes who were diagnosed with lupus and still manage to "beat" lupus. I commented that this really does nothing for me. How about more articles about how most of the lupus community deal with lupus. I think I made them a bit angry with me. : )
No one intended this discussion to offend anyone. We are here to support each other and not pass judgement. As lupus is unpredicatable, so it is with how it affects each of us. And many of us also have other autoimmune issues to deal with in addition to the lupus. Ann A posted that she sees "balance" from the picture, and that is a wonderful way to look at it. Balance for each of us in our own situation.