tag:blogger.com,1999:blog-2464163302553827777.post4063987734685947659..comments2023-11-02T13:52:32.145+02:00Comments on Chronicles of an NF survivor: my pilot light is dimmingSarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-2464163302553827777.post-5723647356096649392018-07-01T21:12:32.654+03:002018-07-01T21:12:32.654+03:00I'm so sorry Sarah. I'm glad you've fo...I'm so sorry Sarah. I'm glad you've found doctors willing to at least listen and who are trying to help. The bent mesh, if accurate, would explain so much. I'm praying (literally) that you find the relief you so, so desperately deserve. michelehttps://www.blogger.com/profile/13867062282650501107noreply@blogger.comtag:blogger.com,1999:blog-2464163302553827777.post-64207432285840461802018-06-29T03:50:38.949+03:002018-06-29T03:50:38.949+03:00I don't know that I have anything intelligent ...I don't know that I have anything intelligent to say but I read all your updates and greatly emphathise with what it means to have a body that feels like it has betrayed you or at least metamorphosed in to something you do not understand or recognise. Pain induced sleep deprivation is a raw deal, don't underestimate the profound effect it can have on mood, perspective and ability to think. I pray that between Mayo and Afula doc someone will have a new insight and be able to help you. Wish we lived closer. Hazak veematz, hugs to you.Princesshttps://www.blogger.com/profile/03699664247859826025noreply@blogger.comtag:blogger.com,1999:blog-2464163302553827777.post-22726062542922692412018-06-28T08:26:12.243+03:002018-06-28T08:26:12.243+03:00Hi, Sarah. We read. We feel for you. We care. But ...Hi, Sarah. We read. We feel for you. We care. But we just don't know how to help. If you are in bed with a migraine - do you want visitors? You are strong and you can get thru this.Tamarhttps://www.blogger.com/profile/14344783071478993190noreply@blogger.comtag:blogger.com,1999:blog-2464163302553827777.post-27675956096192529242018-06-27T06:34:39.814+03:002018-06-27T06:34:39.814+03:00Sending prayers and love to you Sarah. Let me kno...Sending prayers and love to you Sarah. Let me know what's going on in July with your visit to America. So glad Robert is coming.Devorahhttps://www.blogger.com/profile/10541207787297148613noreply@blogger.comtag:blogger.com,1999:blog-2464163302553827777.post-21968972487107895702018-06-26T23:30:34.076+03:002018-06-26T23:30:34.076+03:00Sounds just too hard and I wish it were not. I wil...Sounds just too hard and I wish it were not. I will say again that I’m truly hopeful for the Mayo Clinic. Really. I am so glad Robert is going with you. I’m sending prayers to you, with lots of love —AriellaAnonymoushttps://www.blogger.com/profile/11575004795104285827noreply@blogger.comtag:blogger.com,1999:blog-2464163302553827777.post-46099628572848706662018-06-26T22:24:00.503+03:002018-06-26T22:24:00.503+03:00sending you hugs from Modiin. I can relate to a lo...sending you hugs from Modiin. I can relate to a lot of what you feel. It hurts so much when your body won't let you be even a tenth of the person you know you're meant to be. <br /><br />And when other people don't realize that your body is keeping you from it, not your desires or inner strength or whatever. <br /><br />I can very much relate to living in a body that's betrayed me. <br /><br />Sending you spoons and comfort. Leah<br />I wish I could offer more. Leah Goodmanhttps://www.blogger.com/profile/16546935038863589318noreply@blogger.comtag:blogger.com,1999:blog-2464163302553827777.post-20164302090408171772018-06-26T22:21:34.583+03:002018-06-26T22:21:34.583+03:00Sarah, Oh sweetie you are about my daughter's ...Sarah, Oh sweetie you are about my daughter's age so I think I can give you some mom'n. Hang in there. I know it is disappointing to not have an answer right away. But that tell's me how thoughtful this new Dr. is and that can be a good thing for you. Many years ago my Mother was dying and this Surgeon <br /> was called in. He told us he would have to think about trying surgery. It took about two weeks before he got back to us. He had decided to give it a go if that is what my Mom wanted. We talked it over and decided yes she would give it a shot. That was 25 years ago.A few years ago I went in with her to see her Dr and we where talking about the first time we met and he told me " If someone had asked if my Mom would be around 25 years later he would have said No way, My Mom even out lived that thoughtful skilled surgeon, that saved her life. So if you are still reading this hang in there, the Dr taking his time getting back to you show's me he is thoughtful and trying to see this problem from all sides. <br /> Peace be with you <br /> karen<br />Anonymoushttps://www.blogger.com/profile/13099337855580953912noreply@blogger.comtag:blogger.com,1999:blog-2464163302553827777.post-81842923586628164032018-06-26T21:26:52.365+03:002018-06-26T21:26:52.365+03:00B"H Dearest Sarah ......... Love from ChanaB"H Dearest Sarah ......... Love from ChanaAnonymoushttps://www.blogger.com/profile/14273463647328235620noreply@blogger.comtag:blogger.com,1999:blog-2464163302553827777.post-72000381856197836312018-06-26T20:32:08.351+03:002018-06-26T20:32:08.351+03:00At least know that I care enough to read your upda...At least know that I care enough to read your updates and pray for you everyday....Normanhttps://www.blogger.com/profile/17782451626082195639noreply@blogger.com