tag:blogger.com,1999:blog-8824828113983189391.post8241025353999080958..comments2024-03-22T07:23:12.169-04:00Comments on Despite Lupus: Lupus education - you know where it has to startSara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-8824828113983189391.post-43678094394292838512010-09-22T22:53:46.232-04:002010-09-22T22:53:46.232-04:00Aymie - Some days, it's hard to choose the wor...Aymie - Some days, it's hard to choose the worst of it, isn't it? :)<br /><br />Hope you know you're not alone. I devote a whole chapter in my book to dealing with others...I found it to be such a challenging part of the process. But learning when and how to talk about the disease with others was so important to my ability to move forward. So glad you have a friend who understands. That must make all the difference! Thanks for sharing - SGSara Gormanhttps://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-17249897159663563252010-09-22T22:50:06.315-04:002010-09-22T22:50:06.315-04:00Maria - Thanks so much for your thoughts! So glad ...Maria - Thanks so much for your thoughts! So glad you agree - and I think it does keep us sharp and on our toes to constantly be looking for opportunities to share our experiences with and, more importantly, our knowledge of lupus with others.Sara Gormanhttps://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-59716726599435322232010-09-22T22:47:46.141-04:002010-09-22T22:47:46.141-04:00Anonymous - Hope you've fully recovered! Ideal...Anonymous - Hope you've fully recovered! Ideally, though, you now have a springboard to explain your everyday pain...what a perfect example to use to help people try and "get it". Most people can even visualize the pain involved in a car crash...so that's even better.<br />I recall writing something in my book about every bone in my hands, wrists, and fingers "feeling like they'd been crushed to bits..." That's along the same lines, right? :) Thanks for sharing!Sara Gormanhttps://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-75129359079979666982010-09-14T04:52:50.624-04:002010-09-14T04:52:50.624-04:00In answer to those (rhetorical?) questions, only o...In answer to those (rhetorical?) questions, only one of my friends knows exactly what lupus can do, and that's because her mum's had it for 20-odd years. When I'm sore, the rest of them just look at me with a sort of confused pity and don't seem to understand just how bad it can be even after me telling them. <br /><br />I honestly think that's the worst part of lupus. Well, that along with the pain, photosensitivity and tiredness...Aymienoreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-81251203229671115982010-09-13T18:22:58.440-04:002010-09-13T18:22:58.440-04:00Hey, Sara,
I am in full agreement about PSAs, in g...Hey, Sara,<br />I am in full agreement about PSAs, in general. We focus a lot on personal stories, as well we should because we all experience lupus in our own way. However, it is a lot easier for people to then misunderstand the magnitude of how many live with it.<br /><br />I've heard of "elevator speeches" or "conference" and "writing" blurbs that are power-packed with concise info while you have that window called "attention span". Whatever you want to call it, I think it's important to practice it regularly in order to keep it fresh in my mind and genuine, because there is constantly an opportunity to jump in with one.<br /><br />Above all, I make sure to thank the person for listening. We are used to the ugliness of living with it, but it really isn't easy for people on the 'outside' of our experiences to know what to do with it. Any time they give is gold towards building support.Maria Pfeiferhttp://www.mylifeworkstoday.comnoreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-71634802678222734952010-09-13T16:13:04.010-04:002010-09-13T16:13:04.010-04:00This spring I was in a head-on collision. Luckily ...This spring I was in a head-on collision. Luckily it was on a side street, low speed. No one was seriously hurt, but my car was totalled. The best thing to come out of the car crash? An explanation for the pain and stiffness I feel every morning. All of my very concerned friends and family kept saying, "oh you're really going to hurt tomorrow." And I did, but it wasn't any worse than what I deal with every day. The only difference was the that the pain and stiffness was just in a very specific place where the seatbelt crossed my chest and shoulder versus in my hands, feet, knees and hips symmetrically (seronegative RA). They couldn't understand why I was so chipper after a car crash, but it was because I was so used to that level of pain and I finally had a good explaination of what I normally feel in the rest of my joints.Anonymousnoreply@blogger.com