tag:blogger.com,1999:blog-690850457652849477.post581720920599561962..comments2024-03-19T09:10:47.280-07:00Comments on Reasonably Well: Autoimmune Disease Changes Everything Julia Oleinikhttp://www.blogger.com/profile/04857783768340014545noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-690850457652849477.post-41141310271140112872013-07-01T16:33:57.020-07:002013-07-01T16:33:57.020-07:00I'm thinking that your comments to this woman ...I'm thinking that your comments to this woman could just as easily have come from an elderly person lamenting their change of life. (Not implying that you're old, heaven forbid!!!) But really, how different is what we go thru different than elderly people? Who remember all the things they USED to do. Who can't get around anymore as easily. Who have to find comfy shoes. Who are now retired and want to find meaning in their lives. Who go to so many doctor appts. Etc, etc, etc. Hey, maybe this is giving us a jump start on being able to deal with old age when we get there!stephaniehttps://www.blogger.com/profile/01590844358772463697noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-61623401671109997762013-06-30T19:24:36.677-07:002013-06-30T19:24:36.677-07:00I've had Sjogren's for nearly 20 years, an...I've had Sjogren's for nearly 20 years, and my purpose seems to be educating the various medical personnel that I see about Sjogren's-I've taken brochures and literature to my dentist, eye doctor, and other specialists as it seems so many doctors are not really that knowledgeable about the various ways that Sjogren's can manifest itself (beside dry eyes & mouth). <br /><br />A couple of members in my local Sjogren's support group even buy the Sjogren's Handbook (from the Sjogren's Foundation)to give to their doctors! <br /><br />BeckyJoAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-15138943923548065182013-06-30T17:01:34.263-07:002013-06-30T17:01:34.263-07:00I've complained in the past that I hate the pa...I've complained in the past that I hate the pace of autoimmune disease. You just don't get a fast resolution or quick and certain answer.<br />It's always a "let's try this for a while"<br />Blogging helps me too. It took a long time to learn what I know and it is satisfying to share it with people, though I admit to being more helpful when it is purely local advice. Your blog is very detailed and you're always there. It is a lot of work to blog and you are so thorough.<br />CongratulationsAnnettehttp://yourgoldwatch.blogspot.ca/noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-11154953944071529102013-06-30T15:29:11.092-07:002013-06-30T15:29:11.092-07:00Its really hard , esp if you have spent years dedi...Its really hard , esp if you have spent years dedicated to the education and then working at your career, as it seems to form a good part of our identity. It is hard when you have to give that up..though I have had many people tell me that once a nurse, always a nurse. <br /><br />I think all the ideas offered up are really good. I would add that it takes time, and months and years but gradually , you will find your way. I have found many other RAer and sjogrens friends online, and I try to use part of what i liked about nursing, to help them by just being encouraging,,,and also sharing anything , if they ask, that may be of benefit, of having gone through many years of RA and Sjogrens and related autoimmune disease problems, doctors and frequent hospitalizations, and meds I have tried...such as the 6 bios that did nothing for the RA, but remain on the methotrexate and now Rituxan.... And always , just trying to give hope, and not to sound like I have all the answers but in many things,I have learned the chronic disease is a marathon, not a sprint. Or another way i call it: A hurry up and wait disease....Hurry up and wait for the diagnosis, hurry up and wait for the right meds, hurry up and wait, some more!<br /><br />Our friendships, family relationships all have to often be redefined as well, but though we have a chronic disease, we still have our hearts and souls to share with others. Even if i could not physically attend my sons' school events sometimes, for example, I am always here for them and can talk, share and guide them as best i can. I can still encourage and love my husband, despite these diseases... That is just a few ways I have found, to still feel like a worthwhile , contributing person to this world. Juliehttps://www.blogger.com/profile/03246323949942772639noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-19949756787101859772013-06-30T11:57:51.216-07:002013-06-30T11:57:51.216-07:00You also need to focus on enjoying what you do man...You also need to focus on enjoying what you do manage to accomplish. Good advice all around, everyone. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-791654871795544552013-06-30T09:08:55.578-07:002013-06-30T09:08:55.578-07:00Trying to re-find an identity is difficult. My si...Trying to re-find an identity is difficult. My sister once gave me a refrigerator magnet that said "Life is not about finding yourself. It's about creating yourself." Fortunately, I can still read, research and create jewelry and art. -- SallyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-1082848276167046432013-06-30T08:44:44.841-07:002013-06-30T08:44:44.841-07:00I focus on what I CAN do and thankful for every go...I focus on what I CAN do and thankful for every good day! It also helps having a great family!Anonymoushttps://www.blogger.com/profile/16620604486747713220noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-45802990664334620992013-06-30T08:05:42.191-07:002013-06-30T08:05:42.191-07:00So... My advice is everything you said and find so...So... My advice is <i>everything you said</i> <b>and</b> find something to do that takes you out of your self. That's going to be different things for different people, but might be things like making music or arts or crafts (or baking Julia!). <br /><br />For me, I've discovered I feel much better when I'm doing something for someone else. Now the range of useful things I can do is much reduced, but I volunteered at my local library, helping people with computers (something I knew about from when I worked). Two hours a week, I met a lot of nice people, and I felt useful. <br /><br />Can't do that any more, but I'm often picking up little projects - help someone revise her resume, doing genealogy for family and friends. I'm not focusing on me, feel like I'm being helpful. <br /><br />On the days when I think too much I do get worried about the meaning of it all, I feel like I don't know if I have a purpose, but I'm learning to push those thoughts aside, and remind myself that my purpose is to love my friends and family the best I can, keep my self as well as I can, and try to be a nice person in a complicated world. <br /><br />It's a really different list from my "purpose" before Sjogren's, but it's not an entirely bad one1Kate Stouthttps://www.blogger.com/profile/11787830412834889481noreply@blogger.com