tag:blogger.com,1999:blog-32053362.post1371716464294371556..comments2024-03-26T00:25:34.026-04:00Comments on Not Running a Hospital: Not enough time for lupusPaul Levyhttp://www.blogger.com/profile/17065446378970179507noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-32053362.post-82280737092378899842014-03-11T14:48:35.384-04:002014-03-11T14:48:35.384-04:00I appreciate the line 'manage themelves' ...I appreciate the line 'manage themelves' that after 25 years of blood tests, scans, biopsies, medications, including 'buckets of cortisone' and chemotherapy my daughter now 43 years old has chosen to manage the symptoms as best she can.<br /><br />"If I find another Dr who reads my path results and says these results are off the radar' I will scream. <br /><br />Websites (for what they are worth) focus on diagnosis and more 'tests'. There is minimal information on how to manage life when you can be up and about for 4-6 days a month. The rest of the time is spent managing the overwhelming fatigue, nausea, constipation and cluster headaches. <br /><br />I am a registered Nurse and her carer. Lupus support groups were useful in the past, but today we live a day-at-a-time. <br /><br />Community education nearly zero. Support the same - It is not for the lack of trying.<br /><br />Lorraine PhDAnonymoushttps://www.blogger.com/profile/17695222792485265537noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-10667015885234416062012-08-20T08:23:49.115-04:002012-08-20T08:23:49.115-04:00My white, Irish Dad (not the typical patient profi...My white, Irish Dad (not the typical patient profile) died of Lupus at age 40 in 1967. He had both the systemic and discoid type and suffered tremendous daily pain for 25 years. During my childhood, he spent months at a time in a chronic disease hospital and was a willing "guinea pig" for steroid and methotrexate treatments. He had a lot of respect for his health care workers, especially the nurses, which is probably why I became one.Marilynhttps://www.blogger.com/profile/09719735197987181280noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-12202079585326156652012-08-20T07:35:36.618-04:002012-08-20T07:35:36.618-04:00Can't wait to see how we treat lupus and other...Can't wait to see how we treat lupus and other complex medical conditions when big medicine steps in and we're working on the Cheesecake Factory assembly line!<br /><br />http://www.newyorker.com/reporting/2012/08/13/120813fa_fact_gawandedrrjvhttp://drrjv.comnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-50437534918100346982012-08-20T06:10:10.169-04:002012-08-20T06:10:10.169-04:00One of my earliest memories of being a 3rd year me...One of my earliest memories of being a 3rd year medical student was a 16 year old girl with lupus who died of renal failure. We have come a long way 37 years later, but this is still a dread disease.<br /><br />nonlocalAnonymousnoreply@blogger.com