tag:blogger.com,1999:blog-1104578032634659547.post4089861274428132152..comments2023-12-16T09:55:55.411-05:00Comments on Diary of a Dying Mom: Update on the Line "Exchange"Michelle Mayerhttp://www.blogger.com/profile/02318613737219902794noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-1104578032634659547.post-68226025109731203402008-09-17T20:24:00.000-04:002008-09-17T20:24:00.000-04:00Scleroderma greetings!Why oh why do doctors NOT li...Scleroderma greetings!<BR/><BR/>Why oh why do doctors NOT listen to the patient? During treatment for interstitial cycstitis, my 1st autoimmune friend, I said the planned painkiller would not work. It didn't and I needed a nerve block after the procedure. It's so hard always being right!<BR/><BR/>As far as my 2nd auntoimmune friend and yours SSc I have not had any issues as thankfully all my treatment to date has been at a centre of excellence for scleroderma.<BR/><BR/>Your blog is excellent because it is real. It shows what this disease can do, how serious it is and the wide ranging impact it has on EVERYONE involved.<BR/><BR/>I look forward to reading more and thank you for the priveledge of being able to share in you experience.ohboyoklahomahttps://www.blogger.com/profile/13672552200303325381noreply@blogger.comtag:blogger.com,1999:blog-1104578032634659547.post-68644239324426340962008-09-12T08:13:00.000-04:002008-09-12T08:13:00.000-04:00Glad to hear the re-placement of the line went (re...Glad to hear the re-placement of the line went (relatively) well. Love you!<BR/><BR/>ConnieConniehttps://www.blogger.com/profile/03398917435162744064noreply@blogger.comtag:blogger.com,1999:blog-1104578032634659547.post-49650324423452628532008-09-12T01:38:00.000-04:002008-09-12T01:38:00.000-04:00I was reading your last couple of posts, and you a...I was reading your last couple of posts, and you are an insperation, to me. a healthy mom who is menopausal, who has night sweats and mood swing and yells alot because i'm iratated for no apparant reason, then i read your blog, and well it is uplifting..and then i think, it =could be much worse...and you seem so upbeat... its good to see people like you..and know you make the best of what was dealt...my attidude bye the way after reading your blog has changed me.. thank you...desert dirt divahttps://www.blogger.com/profile/04911578434974184759noreply@blogger.comtag:blogger.com,1999:blog-1104578032634659547.post-52098769720388968742008-09-12T00:43:00.000-04:002008-09-12T00:43:00.000-04:00Hi-Just found your blog via an article detailing y...Hi-<BR/><BR/>Just found your blog via an article detailing your struggle as a patient to be correctly diagnosed, etc..<BR/><BR/>Amen! I am a fellow UNC School of Public Health alumni. A couple years ago I worked on an entire Health Literacy curriculum trying to help patients assert themselves and get what they need from healthcare (called "Navigating Your Healthcare System"). Ironically, I was pregnant at the time and using the same skills at my doctors office and only getting smug responses and condescending stares. Rather discouraging to try to empower people and realizing that all the assertiveness wont work unless, as you said- the relationship changes in both directions (from patient to doctor and doctor to patient). While limited time is surely part of the problem- I think there are very few doctors that really have the empathy for the details necessary to make the doctor/patient relationship work....it's too bad!! <BR/><BR/>God Bless! Laura J. UNC '99Laura J.https://www.blogger.com/profile/00286229554923052409noreply@blogger.comtag:blogger.com,1999:blog-1104578032634659547.post-2446302056576601482008-09-11T23:13:00.000-04:002008-09-11T23:13:00.000-04:00ahhh. i ache for you right now. i can't imagine th...ahhh. i ache for you right now. i can't imagine that happening to me. i do know that if it had, i'd be in that dr's face. dilaudid, is great though. i remember having that for my last couple of surgeries. once injected, i slept for a day and a half. how did it effect you? <BR/><BR/>all in all, how are you feeling? hope you're well.<BR/><BR/>*annie.Samaire Ansonhttps://www.blogger.com/profile/18026578481036956860noreply@blogger.comtag:blogger.com,1999:blog-1104578032634659547.post-39554651223209261262008-09-11T22:01:00.000-04:002008-09-11T22:01:00.000-04:00Glad you're doing OK.I enjoy imagining you telling...Glad you're doing OK.<BR/><BR/>I enjoy imagining you telling the Attending that Fentanyl doesn't work "fast" if it doesn't "work" at all!Lizhttps://www.blogger.com/profile/00642467015109640679noreply@blogger.comtag:blogger.com,1999:blog-1104578032634659547.post-37175429518384228502008-09-11T19:31:00.000-04:002008-09-11T19:31:00.000-04:00Michelle, I bless your spirit, soul and mind in fa...Michelle, <BR/><BR/>I bless your spirit, soul and mind in faith that you will feel the positive reaction from this engagement.<BR/><BR/>Namaste,<BR/>AmandaAmandahttps://www.blogger.com/profile/17495649560358446427noreply@blogger.comtag:blogger.com,1999:blog-1104578032634659547.post-58646118561120390942008-09-11T17:44:00.000-04:002008-09-11T17:44:00.000-04:00Glad your home and it's going well. AnaGlad your home and it's going well. AnaAna's Worldhttps://www.blogger.com/profile/05479861502071834700noreply@blogger.comtag:blogger.com,1999:blog-1104578032634659547.post-6255977439981611822008-09-11T16:56:00.000-04:002008-09-11T16:56:00.000-04:00Glad you got through it and you've got a good norm...Glad you got through it and you've got a good normal beat. Michelle, thanks for letting us know and hope you have a good restful night.Chiphttps://www.blogger.com/profile/06720804693550769658noreply@blogger.comtag:blogger.com,1999:blog-1104578032634659547.post-87706473542428105072008-09-11T16:33:00.000-04:002008-09-11T16:33:00.000-04:00Just found your blog via medicalnewstoday.com - a ...Just found your blog via medicalnewstoday.com - a great news story and a wonderful essay. <BR/><BR/>As a fellow "difficult" scleroderma patient, thank you so much. I knew I'd arrived at that level when the ICU nurse called my hubby at 3:00am to tell him to make me co-operate. Hah, wrong person to say THAT to! He deferred expertise on my case back to me. Ooo, they love me at that hospital now.<BR/><BR/>(another) AmeliaAmiehttps://www.blogger.com/profile/01386283845320981658noreply@blogger.com