Has anyone with this SS , ever just want to throw in the towel and say WTF.. Its like my doctor i feel don't really know what the hell he is dealing with ,but he just loves giving me more and more drugs.. Does anyone want to do that..? or what about your love ones..do they really understand..I mean my mom has celiac dieasese but no one in her family has it, and i tell her i have SS and its like I never heard about this SS..I've been through hell and back from age 12-now..But with all the research and money this Foundation is getting what in the heck is the money going ?..I/m sorry just frustrated...letting off some steam..Love you all ladies
Hi Kat! It sounds like you’re really frustrated. There is so little known about Sjogren’s, and many doctors seem to not have a good treatment plan in place. Have you considered a second opinion, maybe at a major University center? Even if your regular doc is still local, you may be able to get more on top of things.
I understand the frustration….one of the best things about finding this group is having people who "get it" without endless explanation. Everyone here is what keeps me going. Sadly, we have a largely unknown and invisible disease. I know advocating for yourself all of the time is tiring but ya gotta hang in there.
Thank you Enjoy Life..I have dealt with Hardship..Just when you think things will be ok, you get this kind of report from your Doctor..Now on Sept 10th i go in for drops in my eyes, they are ruling out Glaucoma, & told me that I might be going color blind..they will see after the drops what is next for me...
Well I think us ladies are doing exactly that staying strong
Kat,
I'm right there with you. My pcp is an idiot I'm educating her. We battled over her putting me on plaquenil and I was getting frustrated she knew it. I finally got furious made my very valid points on the benefits of the medication she went to her higher up who agreed with me! I actually have them programmed in my phone as the circus. I told my mom it's like going to the circus and watching a bunch of friggin untrained elephants lol. It's true though. I have a new rheumy appointment Monday now I go in with my list of questions and literally interrogate them! It's the only way I deal w/them now. I can usually hold my own with medical terms to a point so I can out talk some of them. Remember you are paying them I've reminded them on that before lol. Don't let them make you want to throw in the towel. Fight girl you've got it in you I know you do. Believe me I've wanted to throw the towel at them before or run them over with my walker lol instead I get pissed and fight back harder. Best of luck.
Ann
LOL...the circus made me laugh. For all of my docs (and I have a good team now) I use a picture of the Minions. It makes me smile now at least when one of them calls, or I have to call them.