Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 I wouldn't mind trying to do a book especially if we could throw in helpful information for people to learn about RSD..... I was thinking the same thing! Healthcare Provider's say the damdest things by RSD Patients who have heard them! Hoping for Pain Free Days, Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 hmm...I wonder... I wouldn't mind trying to do a book especially if we could throw in helpful information for people to learn about RSD..... Chris Barbara Roman wrote: > Maybe there's a book in here for all of us to send in our > contributions to: Healthcare Providers Say the Darndest Things! > > beth > > Hi Beth, I would have a load of things to tell them to put in their > book. Wish there was one. It would probably be a best seller. Take > care and have a good night. > Hugs, > babs > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Well we could give it a shot...I've been doing a lot of writing lately...I'm game... PINEY7@... wrote: > In a message dated 1/13/2004 1:47:18 AM Eastern Standard Time, > chris@... writes: > > I wouldn't mind trying to do a book especially if we > could throw in helpful information for people to learn about RSD..... > > I was thinking the same thing! > > Healthcare Provider's say the damdest things by RSD Patients who have > heard them! > > Hoping for Pain Free Days, > Sandi > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 Hey, I've been to plenty of Quacks.....so many, that they could have their own Season when it comes to hunting! lol And, I swear, I've heard a bunch of crap coming out of their mouths.....some of it no one would believe!! So, I'm game here too! Tonia -------Original Message------- Well we could give it a shot...I've been doing a lot of writing lately...I'm game... PINEY7@... wrote: I wouldn't mind trying to do a book especially if we could throw in helpful information for people to learn about RSD..... I was thinking the same thing! Healthcare Provider's say the damdest things by RSD Patients who have heard them! Hoping for Pain Free Days, This email was cleaned by emailStripper, available for free from http://www.papercut.biz/emailStripper.htm ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2004 Report Share Posted February 7, 2004 Beth, Sounds like you are all ready for your upcoming surgery, and I wish you all the best. I hope this brings you a LOT of pain relief. Congrats on the stopping smoking. I quit 6 years + ago (my Dr. swore I would have less pain if I did - and who knows what I could be like if I didn't) I know how hard it is, you should be very proud of yourself Hugs, Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Hi Beth, Good luck! I will keep you in my prayers. Hugs, babs ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 Peggy, Yep, that about sums it up, getting ready to get ready! The next month is going to be busy, busy, busy. We have furniture deliveries, the new tv installation, and my sister , her hubby and their growing brood will be visiting for about a week in February. So, lots to look forward to I got to see a sonogram picture of the new baby. Cutie, patootie that's for sure. Can't wait till he/she gets here. I'm a sucker for a tiny baby! I worry about my sister.... I have to be honest. She's such a great mom and enjoys the heck out of the kids. I just wish she didn't have to work full time. That's part of the reason they're working on being able to move down here to NC. The cost of living is dramatically less. We just need my brother in law to be able to find a good job down here. It will all happen in God's time. I know and believe it with all my heart. It's just hard to be patient sometimes. Anywho, I can't wait to see you and Lojack (I think Leanne has a new name!) and too! Tell him all is well her in Raleigh Durham! Love, Beth in NC age 48 Fibrotic NSIP 06/06 "For as long as I shall live, I will testify to Love." Re: [ Beth Hey Lady, Are you getting ready to get ready ??? I am getting awfully excited. 30 some to go. Love and Prayers, Peggy ipf 6/04 Worry looks around. Sorry looks back, Faith looks up. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 Peggy, You are a mind reader lady! I was just about to email you when yours popped up. Here's my plan, tell me if it works for you. I'm planning to leave here Wednesday March 5th and arrive at your house Thursday the 6th in the afternoon. (Wednesday night I'm staying overnight in Savannah and getting takeout from Lady and Sons!! Can't wait!) That gives me a day to rest up before Lojack arrives.I'll probably leave either Monday or Tuesday depending on how tired you get of me. Don't go too crazy planning menus, I'm so not fussy and would be very happy with canned soup and crackers!! All I really care about is seeing you guys again! Hugs! Beth in NC age 48 Fibrotic NSIP 06/06 "For as long as I shall live, I will testify to Love." Pulmonologist the way they should be I had my second appointment with my new pulmonologist today but first one that he's had all my medical records. Also, I'd gone through them in detail making a list of questions and things that had never been mentioned to me. I said to him that I knew we probably wouldn't get through it all today, but we did. We covered five pages I'd typed up of issues, questions, information. I was with him over an hour talking (I believe about an hour and 15 minutes). Now, I have no open questions, no items in my charts I don't understand. I know what I need to do about various issues and other doctors I need to see, particularly if I'm going to pursue a transplant. Also, he's making that referral today. It was amazing to leave there feeling educated. Now, I do have to go for another echo, see an ENT, see my Gastroenterologist and get another upper endoscopy, see an Nephrologist, and see a Rheumatologist. Oh, and talk to my Oncologist but nothing of issue at this point there. But he listened and understood that all the things I had written about, all the previous out of range findings and CT findings that hadn't been addressed were important. So, he could tell me which ones didn't matter and which ones did. Nothing about it changes my condition nor the steadily declining PFT's, but it sure is nice to not be sitting wondering about so many things and to now be fully informed about all the previous tests done. Its sad that so many things in them had never been brought to my attention and only came up when I got copies of all my charts. Areminder to everyone. Get a copy of all reports, tests, everything. He also agreed that the sleep study I had, a split night study, was a bunch of garbage, that in no way did it show the need for a CPAP. Basically it shows nothing of any real value. It contradicted itself many times, saying they switched me from CPAP to BIPAP because CPAP didn't work for me and then recommending putting me on CPAP. They were also dumb enough to say that my oxygen prior to anything dropped to 52%. Obviously, I hit or knocked the oximeter off or something. At 52% I would have been gasping desparately for air and headed next door to ER. Only were able to do part of the PFT's but FVC went from 44% in August to 37% in October to 30% now and FEV1 went from 55% in August to 49% in October to 37% now. Nice little pattern there. Thats whatis so strange about this disease is I feel fine, still on moderate levels of oxygen, but FVC is dropping steadily and almost to transplant eligible stage. Based on trend it would be below the magic 25% next time. Although obviously I am nowhere close to the point I would want a transplant. Remaining pain in chest he says is external to lung and probably from VATS, so nothing really to do but wait. Oh well, enough medical crap for the day. Now back to fun and games. I just feel good about seeing someone who took the time to cover everything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 YEAH, I would not get tired of you, that is a fact... We have the other house for y'all to sleep if you want, if you want quite time ---It is about 20 to 25 yards away, across the yard. Or I have one extra room here w/ queen bed so you two can decide where ya wanna sleep. Shoot we may all wind up with a major all night chat,,lol  I talked to yesterday and she is going to have a bunch in Ca. in Sept.. I told her we are going to talk about her..LOLOh I am excited...Love and Prayers, Peggyipf 6/04Worry looks around.Sorry looks back,Faith looks up. Peggy,You are a mind reader lady! I was just about to email you when yours popped up.  Here's my plan, tell me if it works for you. I'm planning to leave here Wednesday March 5th and arrive at your house Thursday the 6th in the afternoon. (Wednesday night I'm staying overnight in Savannah and getting takeout from Lady and Sons!! Can't wait!) That gives me a day to rest up before Lojack arrives.I'll probably leave either Monday or Tuesday depending on how tired you get of me. Don't go too crazy planning menus, I'm so not fussy and would be very happy with canned soup and crackers!! All I really care about is seeing you guys again!Hugs! Beth in NC age 48 Fibrotic NSIP 06/06 "For as long as I shall live, I will testify to Love."   Pulmonologist the way they should beI had my second appointment with my new pulmonologist today but first one that he's had all my medical records. Also, I'd gone through them in detail making a list of questions and things that had never been mentioned to me. I said to him that I knew we probably wouldn't get through it all today, but we did. We covered five pages I'd typed up of issues, questions, information. I was with him over an hour talking (I believe about an hour and 15 minutes). Now, I have no open questions, no items in my charts I don't understand. I know what I need to do about various issues and other doctors I need to see, particularly if I'm going to pursue a transplant. Also, he's making that referral today. It was amazing to leave there feeling educated. Now, I do have to go for another echo, see an ENT, see my Gastroenterologist and get another upper endoscopy, see an Nephrologist, and see a Rheumatologist. Oh, and talk to my Oncologist but nothing of issue at this point there. But he listened and understood that all the things I had written about, all the previous out of range findings and CT findings that hadn't been addressed were important. So, he could tell me which ones didn't matter and which ones did. Nothing about it changes my condition nor the steadily declining PFT's, but it sure is nice to not be sitting wondering about so many things and to now be fully informed about all the previous tests done. Its sad that so many things in them had never been brought to my attention and only came up when I got copies of all my charts. Areminder to everyone. Get a copy of all reports, tests, everything. He also agreed that the sleep study I had, a split night study, was a bunch of garbage, that in no way did it show the need for a CPAP. Basically it shows nothing of any real value. It contradicted itself many times, saying they switched me from CPAP to BIPAP because CPAP didn't work for me and then recommending putting me on CPAP. They were also dumb enough to say that my oxygen prior to anything dropped to 52%. Obviously, I hit or knocked the oximeter off or something. At 52% I would have been gasping desparately for air and headed next door to ER. Only were able to do part of the PFT's but FVC went from 44% in August to 37% in October to 30% now and FEV1 went from 55% in August to 49% in October to 37% now. Nice little pattern there. Thats whatis so strange about this disease is I feel fine, still on moderate levels of oxygen, but FVC is dropping steadily and almost to transplant eligible stage. Based on trend it would be below the magic 25% next time. Although obviously I am nowhere close to the point I would want a transplant. Remaining pain in chest he says is external to lung and probably from VATS, so nothing really to do but wait. Oh well, enough medical crap for the day. Now back to fun and games. I just feel good about seeing someone who took the time to cover everything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 Menus? Did I hear Menus? Which Friday? Menus? What's on the menu? Ok, I'll calm down......lol > > > Sher, > I'm so glad your appointment went well and you're happy with the > doctor! It sounds like she was very thorough and that's what we all > need. Also glad you're going back on the O2, it will help! I'm so > happy you're being taken care of the way you deserve!!! > Hugs and love, > > Beth in NC age 48 Fibrotic NSIP 06/06 > > " For as long as I shall live, I will testify to Love. " > > > > > Pulmonologist the way they should be > > I had my second appointment with my new pulmonologist today but first > one that he's had all my medical records. Also, I'd gone through them > in detail making a list of questions and things that had never been > mentioned to me. I said to him that I knew we probably wouldn't get > through it all today, but we did. We covered five pages I'd typed up > of issues, questions, information. I was with him over an hour > talking (I believe about an hour and 15 minutes). Now, I have no open > questions, no items in my charts I don't understand. I know what I > need to do about various issues and other doctors I need to see, > particularly if I'm going to pursue a transplant. Also, he's making > that referral today. It was amazing to leave there feeling educated. > Now, I do have to go for another echo, see an ENT, see my > Gastroenterologist and get another upper endoscopy, see an > Nephrologist, and see a Rheumatologist. Oh, and talk to my Oncologist > but nothing of issue at this point there. But he listened and > understood that all the things I had written about, all the previous > out of range findings and CT findings that hadn't been addressed were > important. So, he could tell me which ones didn't matter and which > ones did. > > Nothing about it changes my condition nor the steadily declining > PFT's, but it sure is nice to not be sitting wondering about so many > things and to now be fully informed about all the previous tests > done. Its sad that so many things in them had never been brought to > my attention and only came up when I got copies of all my charts. A > reminder to everyone. Get a copy of all reports, tests, everything. > > He also agreed that the sleep study I had, a split night study, was a > bunch of garbage, that in no way did it show the need for a CPAP. > Basically it shows nothing of any real value. It contradicted itself > many times, saying they switched me from CPAP to BIPAP because CPAP > didn't work for me and then recommending putting me on CPAP. They > were also dumb enough to say that my oxygen prior to anything dropped > to 52%. Obviously, I hit or knocked the oximeter off or something. At > 52% I would have been gasping desparately for air and headed next > door to ER. > > Only were able to do part of the PFT's but FVC went from 44% in > August to 37% in October to 30% now and FEV1 went from 55% in August > to 49% in October to 37% now. Nice little pattern there. Thats what > is so strange about this disease is I feel fine, still on moderate > levels of oxygen, but FVC is dropping steadily and almost to > transplant eligible stage. Based on trend it would be below the magic > 25% next time. Although obviously I am nowhere close to the point I > would want a transplant. Remaining pain in chest he says is external > to lung and probably from VATS, so nothing really to do but wait. Oh > well, enough medical crap for the day. Now back to fun and games. > > I just feel good about seeing someone who took the time to cover > everything. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 Speaking of menus. A piece of information you might not know. Many major chains test their new menu items in the Orlando area, near Disneyworld. Its the easiest place to get the widest crosssection of people from around the country. Now you people made me think of food: Shula's Steak House, Miami Lakes and Chicago Joes' Stone Crab, Miami Beach One Long Gone-Kapok Tree Inn, Clearwater Ok, back on track, but now hungry. > > > > > Sher, > I'm so glad your appointment went well and you're happy with the doctor! It sounds like she was very thorough and that's what we all need. Also glad you're going back on the O2, it will help! I'm so happy you're being taken care of the way you deserve!!! > Hugs and love, > > Beth in NC age 48 Fibrotic NSIP 06/06 > > " For as long as I shall live, I will testify to Love. " > > > > > > Pulmonologist the way they should be > > > I had my second appointment with my new pulmonologist today but first > one that he's had all my medical records. Also, I'd gone through them > in detail making a list of questions and things that had never been > mentioned to me. I said to him that I knew we probably wouldn't get > through it all today, but we did. We covered five pages I'd typed up > of issues, questions, information. I was with him over an hour > talking (I believe about an hour and 15 minutes). Now, I have no open > questions, no items in my charts I don't understand. I know what I > need to do about various issues and other doctors I need to see, > particularly if I'm going to pursue a transplant. Also, he's making > that referral today. It was amazing to leave there feeling educated. > Now, I do have to go for another echo, see an ENT, see my > Gastroenterologist and get another upper endoscopy, see an > Nephrologist, and see a Rheumatologist. Oh, and talk to my Oncologist > but nothing of issue at this point there. But he listened and > understood that all the things I had written about, all the previous > out of range findings and CT findings that hadn't been addressed were > important. So, he could tell me which ones didn't matter and which > ones did. > > Nothing about it changes my condition nor the steadily declining > PFT's, but it sure is nice to not be sitting wondering about so many > things and to now be fully informed about all the previous tests > done. Its sad that so many things in them had never been brought to > my attention and only came up when I got copies of all my charts. A > reminder to everyone. Get a copy of all reports, tests, everything. > > He also agreed that the sleep study I had, a split night study, was a > bunch of garbage, that in no way did it show the need for a CPAP. > Basically it shows nothing of any real value. It contradicted itself > many times, saying they switched me from CPAP to BIPAP because CPAP > didn't work for me and then recommending putting me on CPAP. They > were also dumb enough to say that my oxygen prior to anything dropped > to 52%. Obviously, I hit or knocked the oximeter off or something. At > 52% I would have been gasping desparately for air and headed next > door to ER. > > Only were able to do part of the PFT's but FVC went from 44% in > August to 37% in October to 30% now and FEV1 went from 55% in August > to 49% in October to 37% now. Nice little pattern there. Thats what > is so strange about this disease is I feel fine, still on moderate > levels of oxygen, but FVC is dropping steadily and almost to > transplant eligible stage. Based on trend it would be below the magic > 25% next time. Although obviously I am nowhere close to the point I > would want a transplant. Remaining pain in chest he says is external > to lung and probably from VATS, so nothing really to do but wait. Oh > well, enough medical crap for the day. Now back to fun and games. > > I just feel good about seeing someone who took the time to cover > everything. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 Peggy, I'll sleep anywhere you want to put me, I'll sleep in the woods if it comes to it!! I just can't wait to see you! Beth in NC age 48 Fibrotic NSIP 06/06 "For as long as I shall live, I will testify to Love." Pulmonologist the way they should be I had my second appointment with my new pulmonologist today but first one that he's had all my medical records. Also, I'd gone through them in detail making a list of questions and things that had never been mentioned to me. I said to him that I knew we probably wouldn't get through it all today, but we did. We covered five pages I'd typed up of issues, questions, information. I was with him over an hour talking (I believe about an hour and 15 minutes). Now, I have no open questions, no items in my charts I don't understand. I know what I need to do about various issues and other doctors I need to see, particularly if I'm going to pursue a transplant. Also, he's making that referral today. It was amazing to leave there feeling educated. Now, I do have to go for another echo, see an ENT, see my Gastroenterologist and get another upper endoscopy, see an Nephrologist, and see a Rheumatologist. Oh, and talk to my Oncologist but nothing of issue at this point there. But he listened and understood that all the things I had written about, all the previous out of range findings and CT findings that hadn't been addressed were important. So, he could tell me which ones didn't matter and which ones did. Nothing about it changes my condition nor the steadily declining PFT's, but it sure is nice to not be sitting wondering about so many things and to now be fully informed about all the previous tests done. Its sad that so many things in them had never been brought to my attention and only came up when I got copies of all my charts. Areminder to everyone. Get a copy of all reports, tests, everything. He also agreed that the sleep study I had, a split night study, was a bunch of garbage, that in no way did it show the need for a CPAP. Basically it shows nothing of any real value. It contradicted itself many times, saying they switched me from CPAP to BIPAP because CPAP didn't work for me and then recommending putting me on CPAP. They were also dumb enough to say that my oxygen prior to anything dropped to 52%. Obviously, I hit or knocked the oximeter off or something. At 52% I would have been gasping desparately for air and headed next door to ER. Only were able to do part of the PFT's but FVC went from 44% in August to 37% in October to 30% now and FEV1 went from 55% in August to 49% in October to 37% now. Nice little pattern there. Thats whatis so strange about this disease is I feel fine, still on moderate levels of oxygen, but FVC is dropping steadily and almost to transplant eligible stage. Based on trend it would be below the magic 25% next time. Although obviously I am nowhere close to the point I would want a transplant. Remaining pain in chest he says is external to lung and probably from VATS, so nothing really to do but wait. Oh well, enough medical crap for the day. Now back to fun and games. I just feel good about seeing someone who took the time to cover everything. Quote Link to comment Share on other sites More sharing options...
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