tag:blogger.com,1999:blog-1720872153813357167.post6589614956079510475..comments2024-01-16T01:42:41.699+11:00Comments on Tune into Radio Carly: Ichthyosis and medical shaming.Carly Findlayhttp://www.blogger.com/profile/01368145710452826385noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-1720872153813357167.post-58970619702954535942016-12-07T06:56:43.002+11:002016-12-07T06:56:43.002+11:00THANK YOU. Even on the ichthyosis facebook page pe...THANK YOU. Even on the ichthyosis facebook page people keep telling me all the natural crap I should be doing when I specifically asked about prescriptions. Arihttps://www.blogger.com/profile/11223656813163888679noreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-66118352185657088812016-11-18T08:29:00.367+11:002016-11-18T08:29:00.367+11:00Ah yes the holier than thou who insist on trying t...Ah yes the holier than thou who insist on trying to force their ideas on you. As if we don't have enough to contend with. I once had to endure a reiki session (it was free! but never again) at which the practitioner kept going on about "western chemicals" as though they were dog excrement when he discovered I was on insulin. Insulin's been the only thing keeping me alive since I was a baby, don't make out I should be ashamed to rely on it as though I haven't tried hard enough with "natural" therapies.Mel@TwiceDiabeteshttps://www.blogger.com/profile/06704077874293411964noreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-84362214810411990442016-11-16T04:11:45.796+11:002016-11-16T04:11:45.796+11:00LOVE your blog! I was once told by a priest, my p...LOVE your blog! I was once told by a priest, my praying was faulty, and that I should pray better to god to make me taller. How does one politely tell a priest to take his rosary and... I'll stop there.Frank_Vhttps://www.blogger.com/profile/15707525224938640688noreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-20767309930891216362016-11-15T12:16:38.034+11:002016-11-15T12:16:38.034+11:00I have hEDS too and so many people try to "cu...I have hEDS too and so many people try to "cure" me with collagen supplements.... Nope, it doesn't work that way, and I'm probably allergic to your supplements anyway thanks to the systemic mastocytosis that so often goes with hEDS.<br /><br />Well said, Carly, we should be able to depend on others in the rare disease community to support our making informed choices for ourselves, without subjecting us to drama.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-37845068463117871382016-11-15T10:07:41.323+11:002016-11-15T10:07:41.323+11:00I've just started researcheng hEDS which is a ...I've just started researcheng hEDS which is a defective collagen condition that I believe affects some in our family. It explains why we have intolerances including to many medications, even those prescribed by medical authorities. I think all people, unfortunately also those in the medical community, need to understand the differences that seperate people may not necessarily be obvious. They may even be molecular. What works for one - emotionally, physically or mentally - may be totally wrong for another persons body. So if we share our successful methods we also need to accept that these methods have a good chance of not working for others.willywagtailhttps://www.blogger.com/profile/04161501326916060091noreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-49592946344669699452016-11-14T22:28:26.620+11:002016-11-14T22:28:26.620+11:00In other words, awesome post. Always able to put i...In other words, awesome post. Always able to put into words things my brain is still processing.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-45962994766120594362016-11-14T22:27:44.583+11:002016-11-14T22:27:44.583+11:00A friend of mine owns a fancy, boutique skincare c...A friend of mine owns a fancy, boutique skincare company that is quite prominent and well renowned. But just because it works for me, I don't go running around telling everybody with a skin condition that it can work for them as well. I think for people who are new to the illness fall for the false promises of charlatans, rather than the more difficult reality from fellow travellers. And it is precisely that which causes people to hold on to false hope for so long, where unscrupulous people can see that vulnerability in a play on it to make money. I honestly cannot count the amount of times people have told me about cures that simply won't work, and when I point out that it would not work with me the standard response is "gee I was only trying to help."Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-31692837059340658592016-11-14T08:13:50.228+11:002016-11-14T08:13:50.228+11:00I never thought of this term before but I am all t...I never thought of this term before but I am all too familiar with the concept. Drives me nuts!! :-(Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-27363206803944761582016-11-14T07:55:50.891+11:002016-11-14T07:55:50.891+11:00Parents have enough worry without this. I agree so...Parents have enough worry without this. I agree so wholeheartedly! Fear monger tactics are horrible.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-21736106171959352602016-11-14T07:43:32.803+11:002016-11-14T07:43:32.803+11:00I have been told to drink horsemilk. I had a cherr...I have been told to drink horsemilk. I had a cherry diet. Some alternative doctor made homeopatic medicins with sheds of my skin. The one thing that works for me is a batha with dead sea salt. Antibiotics. Steroid cream in a low dose. Avoid chocolate and most painkillers. Not an every day shower. Eat just a little sugar. Lots of sleep.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-86331790643684942962016-11-14T07:42:18.442+11:002016-11-14T07:42:18.442+11:00The worst I've encountered was a spouse of a m...The worst I've encountered was a spouse of a man with Ichthyosis. I tried to tell her as politely as I could that I have my own treatment, yet she pushed and pushed this natural cream. I gave her the example of the pharmacist giving me something that caused an awful reaction. Then she told me how rude and ungrateful I was.Carly Findlaynoreply@blogger.comtag:blogger.com,1999:blog-1720872153813357167.post-5180405774584125452016-11-14T07:41:21.113+11:002016-11-14T07:41:21.113+11:00I know im a bad mom for using prescription ointme...I know im a bad mom for using prescription ointments on my son instead of letting him suffer in pain n uncontrollable itching 😕 I think its great that we can share stories, idea n suggestions with each other but I hate people telling me that their routines wld be better than our routine. While I wish we cold go all natural, I will stick to what I know works for him even if it is Dr. Prescribed. I love ur posts Carly!Anonymousnoreply@blogger.com