Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 Jo, Thanks, I will definitely keep everyone posted after Monday. I do have a bit more news though, I went to the ortho doc today - he's a foot specialist - for my left foot. He took a bunch of x-rays and determined it was not broken, but he examined it and said it was definitely from the RSD. He was real worried that if they didn't do something then my foot would be crooked and deformed permanently. So, I now have a cast on my left foot up to just below my knee. I can walk on it, thankfully, but I need crutches or a walker for balance. I'm using a crutch right now and am trying to save up money for a walker <sigh> I won't be able to drive because I brake with my left foot since my right leg is so bad, now I can't even do that. I go back in a week or earlier if the cast bothers the RSD...in which case he will put a brace or boot-like thing on. I swear, it just never ends...I'm falling apart so bad. Has anyone ever had a cast put on due to the RSD? I'm just curious. Well anyway, take care and have a good weekend...I'll talk to you soon. <hugs> Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 Ginny, Does the facility that you are having the MRIs in have an "open" MRI machine? These days, they are as accurate as the closed ones, and they are much more pleasant (if these things can actually be pleasant). I would ask about that before you go in for your next MRI. Let us know what they find out! Hugs, Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 > > I just had one a few months ago and had to ask for a sleeping pill before I > could even go near the machine..... > So, maybe if you call ahead and ask them for something to relax you during > the MRI, they'll give you a Valium to help you out. > > Thats a great idea, i remember many pts getting Valium when they were going for MRIs when I worked for a neurologist office. Its just enough to take the edge off. Hugs Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2008 Report Share Posted July 25, 2008 Hi Joyce, I hope things will settle soon and you will feel much better. I know the feeling of having no appetite, and having to put some food in the stomach. I'm glad to hear you're getting Hope from your dr's and they are trying very hard to help you! Have a good weekend and I'm hoping you're not going to be in so much pain. IrenePF 03/07 Raynaud's Disease 09/07Crohn's Disease 03/95 Asthma 02/92 Update on ME The pulmo is having a tough time controlling my use of Coumadin, which is a necessity with Flolan. Every time my weight fluctuates, the numbers change....then it is back to square one. I am having a problem with nausea. I have no appetite. I have to force myself to eat. We can not find the cause, so we don't know how to make it stop. I weighed 134 this morning. I haven't weighed 134 since 6th grade. I am now taking Phenegran to get through the day and Remeran at night. Neither of these drugs promote clear thinking!! I am taking Xanax because of panic attacks. Another mood pill. On top of this, I began having severe pain in my knee. So, while waiting for my ortho appt, I am taking pain pills. I have to really concentrate to make a simple decision. So, keep me in your prayers. I get hope from my doctors. They are working like mad dogs to keep me alive. My pulmo told me on Wednesday that he was not ready to discuss mortality. I had said something about dying. I don't think the word is in his vocabulary. So, if they believe..... I will believe. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 Yahoo! Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2008 Report Share Posted July 25, 2008 Hi Joyce, Like all of us, I too am sorry for your new issues! Everyday we read about something terrible one of us must face, so our rewards better be great!!!!! lol I'll add my prayers to the rest and hope your weekend brings peace and some happiness. I;m sending much love, TerryTerry Pennisi 11/07 IPF Nevada Subject: Update on METo: Breathe-Support Date: Friday, July 25, 2008, 11:00 PM The pulmo is having a tough time controlling my use of Coumadin, which is a necessity with Flolan. Every time my weight fluctuates, the numbers change....then it is back to square one. I am having a problem with nausea. I have no appetite. I have to force myself to eat. We can not find the cause, so we don't know how to make it stop. I weighed 134 this morning. I haven't weighed 134 since 6th grade. I am now taking Phenegran to get through the day and Remeran at night. Neither of these drugs promote clear thinking!! I am taking Xanax because of panic attacks. Another mood pill. On top of this, I began having severe pain in my knee. So, while waiting for my ortho appt, I am taking pain pills. I have to really concentrate to make a simple decision. So, keep me in your prayers. I get hope from my doctors. They are working like mad dogs to keep me alive. My pulmo told me on Wednesday that he was not ready to discuss mortality. I had said something about dying. I don't think the word is in his vocabulary. So, if they believe..... I will believe. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2008 Report Share Posted July 25, 2008 Joyce, My goodness it amazes me that you can manage to right a coherent email with everything that's going on and all your meds. I'm so sorry that you're coping with all this, it makes me want to scream ENOUGH!! on your behalf. Please remember and know in your heart that you are always in my thoughts and prayers. I love you! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Update on ME The pulmo is having a tough time controlling my use of Coumadin, which is a necessity with Flolan. Every time my weight fluctuates, the numbers change....then it is back to square one. I am having a problem with nausea. I have no appetite. I have to force myself to eat. We can not find the cause, so we don't know how to make it stop. I weighed 134 this morning. I haven't weighed 134 since 6th grade. I am now taking Phenegran to get through the day and Remeran at night. Neither of these drugs promote clear thinking!! I am taking Xanax because of panic attacks. Another mood pill. On top of this, I began having severe pain in my knee. So, while waiting for my ortho appt, I am taking pain pills. I have to really concentrate to make a simple decision. So, keep me in your prayers. I get hope from my doctors. They are working like mad dogs to keep me alive. My pulmo told me on Wednesday that he was not ready to discuss mortality. I had said something about dying. I don't think the word is in his vocabulary. So, if they believe..... I will believe. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2008 Report Share Posted July 25, 2008 Joyce I just hate that you have to go through all this strange stuff and suffer so. I say enough already too. I love you and continue to pray. Love and Prayers, Peggy IPF 2004, Florida"Worry looks around, Sorry looks back, Faith looks up." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2008 Report Share Posted July 25, 2008 Joyce D..Queen that you are...You are having too much trouble!!! I also haven't seen 134 on the scale for decades..I'd be happy with 160! I'm doing the "dreadmill" now that the Vertigo and the cracked ribs are healed! I've gotten to 8 minutes at 1.5 mph...used to in my other life go30-45 minutes at 3.5. Well those days are so over!! but I'm walking just the same!!! Hope your week-end is a good one. I got to have Sara here today and I'll have both my baby grand daughters here on Sunday...What joy they bring! Z fibriotic NSIP/05 Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Joyce wrote: The pulmo is having a tough time controlling my use of Coumadin, which is a necessity with Flolan. Every time my weight fluctuates, the numbers change....then it is back to square one. I am having a problem with nausea. I have no appetite. I have to force myself to eat. We can not find the cause, so we don't know how to make it stop. I weighed 134 this morning. I haven't weighed 134 since 6th grade. I am now taking Phenegran to get through the day and Remeran at night. Neither of these drugs promote clear thinking!! I am taking Xanax because of panic attacks. Another mood pill. On top of this, I began having severe pain in my knee. So, while waiting for my ortho appt, I am taking pain pills. I have to really concentrate to make a simple decision. So, keep me in your prayers. I get hope from my doctors. They are working like mad dogs to keep me alive. My pulmo told me on Wednesday that he was not ready to discuss mortality. I had said something about dying. I don't think the word is in his vocabulary. So, if they believe.....I will believe. Hugs, Joyce D. Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 ......I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.5.5/1571 - Release Date: 7/24/2008 5:42 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2008 Report Share Posted July 26, 2008 Joyce Seems the only ways we ever lose weight are the cases where we'd certainly prefer not to. > > > The pulmo is having a tough time controlling my use of Coumadin, which > > is a necessity with Flolan. Every time my weight fluctuates, the > > numbers change....then it is back to square one. I am having a > > problem with nausea. I have no appetite. I have to force myself to > > eat. We can not find the cause, so we don't know how to make it stop. > > > > I weighed 134 this morning. I haven't weighed 134 since 6th grade. I > > am now taking Phenegran to get through the day and Remeran at night. > > Neither of these drugs promote clear thinking!! I am taking Xanax > > because of panic attacks. Another mood pill. On top of this, I began > > having severe pain in my knee. So, while waiting for my ortho appt, I > > am taking pain pills. I have to really concentrate to make a simple > > decision. > > > > So, keep me in your prayers. I get hope from my doctors. They are > > working like mad dogs to keep me alive. My pulmo told me on Wednesday > > that he was not ready to discuss mortality. I had said something > > about dying. I don't think the word is in his vocabulary. So, if > > they believe.....I will believe. > > > > Hugs, Joyce D. > > > > Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary > > Hypertension 2008 > > Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected > > for Transplant 2006 > > .....I will not forget you. Behold, I have engraved you on the palm > > of my hands. Isaiah 49: 15-16 > > > > > > > > > > > > > > > >No virus found in this incoming message. > >Checked by AVG - http://www.avg.com > >Version: 8.0.138 / Virus Database: 270.5.5/1571 - Release Date: 7/24/2008 5:42 PM > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2008 Report Share Posted July 26, 2008 Joyce, This disease is so strange. The rest of us are trying not to eat everything in our cupboards and you are trying to find the appetite just to sample a little. I am so sad you are still having to battle so many ailments and so happy that you are STILL battling and not giving up! I have always hated the Book of Job because it seemed so unfair that he had to suffer such vast and deep afflictions and I feel that you are a living example of Job- through every new trial, new medical procedure, new round of drugs, you have kept your faith, kept your hope, kept your wonderful loving heart. For some one who is taking a slew of things that cause confusion -you have such clear posts, and for someone who is going through the worst of trials, you are always such a source of encouragement and strength to everyone. God bless you Joyce- Sarcoid/PF 3/2006 California Update on ME The pulmo is having a tough time controlling my use of Coumadin, which is a necessity with Flolan. Every time my weight fluctuates, the numbers change....then it is back to square one. I am having a problem with nausea. I have no appetite. I have to force myself to eat. We can not find the cause, so we don't know how to make it stop. I weighed 134 this morning. I haven't weighed 134 since 6th grade. I am now taking Phenegran to get through the day and Remeran at night. Neither of these drugs promote clear thinking!! I am taking Xanax because of panic attacks. Another mood pill. On top of this, I began having severe pain in my knee. So, while waiting for my ortho appt, I am taking pain pills. I have to really concentrate to make a simple decision. So, keep me in your prayers. I get hope from my doctors. They are working like mad dogs to keep me alive. My pulmo told me on Wednesday that he was not ready to discuss mortality. I had said something about dying. I don't think the word is in his vocabulary. So, if they believe..... I will believe. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2008 Report Share Posted July 26, 2008 joyce much love and prayers to you. i'm awful sorry to hear your struggles and hope your doctors pull something out of the hat. may uip 0606 glasgow, scotland > > > The pulmo is having a tough time controlling my use of Coumadin, which > is a necessity with Flolan. Every time my weight fluctuates, the > numbers change....then it is back to square one. I am having a problem > with nausea. I have no appetite. I have to force myself to eat. We > can not find the cause, so we don't know how to make it stop. > > I weighed 134 this morning. I haven't weighed 134 since 6th grade. I > am now taking Phenegran to get through the day and Remeran at night. > Neither of these drugs promote clear thinking!! I am taking Xanax > because of panic attacks. Another mood pill. On top of this, I began > having severe pain in my knee. So, while waiting for my ortho appt, I > am taking pain pills. I have to really concentrate to make a simple > decision. > > So, keep me in your prayers. I get hope from my doctors. They are > working like mad dogs to keep me alive. My pulmo told me on Wednesday > that he was not ready to discuss mortality. I had said something about > dying. I don't think the word is in his vocabulary. So, if they > believe.....I will believe. > > Hugs, Joyce D. > > Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension > 2008 > Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected > for Transplant 2006 > .....I will not forget you. Behold, I have engraved you on the palm of > my hands. Isaiah 49: 15-16 > Quote Link to comment Share on other sites More sharing options...
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