Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 Sunny I am so sorry to hear you are going through so much. I will be praying special prayers for you. Take Care of you. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Since my fundo when I went in to 3 hours of Gran Mal Seizures I have been having them pretty regular except not as severe. They put me on Neurontin 300 mg 3 times a day. I am having severe nerve pain in my extremeties as well. Does anyone know if this could be a size effect of the surgery. I am so miserable I just want to die. The pain is wearing me down and I feel so alone. Any input would be nice. I am sorry that I hurt Bruce with my email a while back. Bruce won't you please accept my apology. You know so much and I need help. I can't take anymore. Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009  SUNNY...I'LL DITTO PEGGY HERE. JUST HAPPENED TO CATCH THIS POST OF YOU GOING THROUGH SO MUCH. I WISH I COULD SAY SOMETHING THAT WOULD HELP YOU! I'M SURE YOU ARE NO DOUBT RESTING AND GATHERING WHAT STRENGTH YOU CAN. I CAN PRAY FOR YOU SUNNY. AND I DO. GOD BLESS. MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Re: Miserable Sunny I am so sorry to hear you are going through so much. I will be praying special prayers for you. Take Care of you. Love and Prayers, Peggy IPF 2004, Florida Worry looks around, Sorry looks back, Faith looks up. Since my fundo when I went in to 3 hours of Gran Mal Seizures I have been having them pretty regular except not as severe. They put me on Neurontin 300 mg 3 times a day. I am having severe nerve pain in my extremeties as well. Does anyone know if this could be a size effect of the surgery. I am so miserable I just want to die. The pain is wearing me down and I feel so alone. Any input would be nice. I am sorry that I hurt Bruce with my email a while back. Bruce won't you please accept my apology. You know so much and I need help. I can't take anymore. Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 Sunny, I'm so sorry that you are going through this. I can't imagine what is causing it though it's hard to imagine it's a side effect of the fundoplication. Though I suppose it could be part of a reaction to the anesthesia or possibly some type of damage from lack of oxygen at some point? I'm really speculating here cause I have no idea at all. Have you been to a neurologist? Please seek out the care of someone who is specialist in dealing with seizure disorders. What tests have they done? Know that we are pulling for you here. I hope things get better soon! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Tuesday, August 11, 2009 2:45:47 PMSubject: Miserable Since my fundo when I went in to 3 hours of Gran Mal Seizures I have been having them pretty regular except not as severe. They put me on Neurontin 300 mg 3 times a day. I am having severe nerve pain in my extremeties as well. Does anyone know if this could be a size effect of the surgery. I am so miserable I just want to die. The pain is wearing me down and I feel so alone. Any input would be nice. I am sorry that I hurt Bruce with my email a while back. Bruce won't you please accept my apology. You know so much and I need help. I can't take anymore. Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 glad to heaar from you sunny, even if you feel like sh--- at least yu are able to type Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: MiserableTo: Breathe-Support Date: Tuesday, August 11, 2009, 2:45 PM Since my fundo when I went in to 3 hours of Gran Mal Seizures I have been having them pretty regular except not as severe. They put me on Neurontin 300 mg 3 times a day. I am having severe nerve pain in my extremeties as well. Does anyone know if this could be a size effect of the surgery. I am so miserable I just want to die. The pain is wearing me down and I feel so alone. Any input would be nice. I am sorry that I hurt Bruce with my email a while back. Bruce won't you please accept my apology. You know so much and I need help. I can't take anymore. Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 I have been referred to a neurologist so I am just waiting to talk to him. The Neurontin causes depression. Like I need more of that. Thanks for responding. I thought everyone was mad at me. Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho From: Beth Sent: Tuesday, August 11, 2009 12:49 PM To: Breathe-Support Subject: Re: Miserable Sunny, I'm so sorry that you are going through this. I can't imagine what is causing it though it's hard to imagine it's a side effect of the fundoplication. Though I suppose it could be part of a reaction to the anesthesia or possibly some type of damage from lack of oxygen at some point? I'm really speculating here cause I have no idea at all. Have you been to a neurologist? Please seek out the care of someone who is specialist in dealing with seizure disorders. What tests have they done? Know that we are pulling for you here. I hope things get better soon! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support Sent: Tuesday, August 11, 2009 2:45:47 PMSubject: Miserable Since my fundo when I went in to 3 hours of Gran Mal Seizures I have been having them pretty regular except not as severe. They put me on Neurontin 300 mg 3 times a day. I am having severe nerve pain in my extremeties as well. Does anyone know if this could be a size effect of the surgery. I am so miserable I just want to die. The pain is wearing me down and I feel so alone. Any input would be nice. I am sorry that I hurt Bruce with my email a while back. Bruce won't you please accept my apology. You know so much and I need help. I can't take anymore. Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 Thank you Sher. I just feel all alone. Knowing someone is praying for me helps a lot. Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho From: Sher Bauman Sent: Tuesday, August 11, 2009 12:15 PM To: Breathe-Support Subject: Re: Miserable  SUNNY...I'LL DITTO PEGGY HERE. JUST HAPPENED TO CATCH THIS POST OF YOU GOING THROUGH SO MUCH. I WISH I COULD SAY SOMETHING THAT WOULD HELP YOU! I'M SURE YOU ARE NO DOUBT RESTING AND GATHERING WHAT STRENGTH YOU CAN. I CAN PRAY FOR YOU SUNNY. AND I DO. GOD BLESS. MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Re: Miserable Sunny I am so sorry to hear you are going through so much. I will be praying special prayers for you. Take Care of you. Love and Prayers, Peggy IPF 2004, Florida Worry looks around, Sorry looks back, Faith looks up. On Aug 11, 2009, at 2:45 PM, <rpickel1 (AT) msn (DOT) com> wrote: Since my fundo when I went in to 3 hours of Gran Mal Seizures I have been having them pretty regular except not as severe. They put me on Neurontin 300 mg 3 times a day. I am having severe nerve pain in my extremeties as well. Does anyone know if this could be a size effect of the surgery. I am so miserable I just want to die. The pain is wearing me down and I feel so alone. Any input would be nice. I am sorry that I hurt Bruce with my email a while back. Bruce won't you please accept my apology. You know so much and I need help. I can't take anymore. Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 Sunny, I'm sorry you are still doing so bad. I have e-mailed you and called you with no answer to either one. I don't know what more I can do.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: MiserableTo: Breathe-Support Date: Tuesday, August 11, 2009, 11:45 AM Since my fundo when I went in to 3 hours of Gran Mal Seizures I have been having them pretty regular except not as severe. They put me on Neurontin 300 mg 3 times a day. I am having severe nerve pain in my extremeties as well. Does anyone know if this could be a size effect of the surgery. I am so miserable I just want to die. The pain is wearing me down and I feel so alone. Any input would be nice. I am sorry that I hurt Bruce with my email a while back. Bruce won't you please accept my apology. You know so much and I need help. I can't take anymore. Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 Sunny, I take neurontin, too. I take 300 mg mornings and 800 mgs at night. My doctor once told me that the dose could go as high as 1500 mg for some people but that I was on a lower dose. Nerve pain is awful. I have it constantly in my feet. Sometimes my left arm has a flair-up. My dose has gradually increased since I started on this med. I started with 300 mg. Then was precribed 600 mg at night and 200 mg mornings. There are some other meds that can be prescribed for nerve pain. Maybe you could talk to your doctor about it. Last Saturday,morning I was napping on the recliner in the living room and was rudely awakened by horrible cramps at the same time in both feet. I attributed it to ye old neuropathy. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> Sunny,> I'm so sorry that you are going through this. I can't imagine what is causing it though it's hard to imagine it's a side effect of the fundoplication. Though I suppose it could be part of a reaction to the anesthesia or possibly some type of damage from lack of oxygen at some point? I'm really speculating here cause I have no idea at all.> > Have you been to a neurologist? Please seek out the care of someone who is specialist in dealing with seizure disorders. What tests have they done? > > Know that we are pulling for you here. I hope things get better soon!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > ________________________________> To: Breathe-Support > Sent: Tuesday, August 11, 2009 2:45:47 PM> Subject: Miserable> > > Since my fundo when I went in to 3 hours of Gran Mal Seizures I have been having them pretty regular except not as severe. They put me on Neurontin 300 mg 3 times a day. I am having severe nerve pain in my extremeties as well. Does anyone know if this could be a size effect of the surgery. I am so miserable I just want to die. The pain is wearing me down and I feel so alone. Any input would be nice. I am sorry that I hurt Bruce with my email a while back. Bruce won't you please accept my apology. You know so much and I need help. I can't take anymore.> > Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 Dear Sunny,I wondered where you were. I haven't seen a post in awhile. Sorry your having such a difficult time.I hate pain. I'll pray for yours to go away. I have Sjogren's also. I had a terrible time with numbness and tingling and pain in my hands from my fingertips all the way to my shoulders at times. It was discovered that I had severe carpal tunnel in both wrists after I had an EMG (electromyography ?) I had surgery on both (one at a time) and had great results. It did take me a full year but I have regained most of my strength in both upper extremities, and best of all no pain or numbness and tingling. So keep your chin up and know that I'm hoping the best for you.PJ in OHIO, 54(yipee), Sjogren's '95, IPF '09 Miserable Since my fundo when I went in to 3 hours of Gran Mal Seizures I have been having them pretty regular except not as severe. They put me on Neurontin 300 mg 3 times a day. I am having severe nerve pain in my extremeties as well. Does anyone know if this could be a size effect of the surgery. I am so miserable I just want to die. The pain is wearing me down and I feel so alone. Any input would be nice. I am sorry that I hurt Bruce with my email a while back. Bruce won't you please accept my apology. You know so much and I need help. I can't take anymore. Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 I used to take Neurontin but it didn't help me. I take Lyrica and I call it my wonder drug. It helps my fibromyalgia too.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: Re: MiserableTo: Breathe-Support Date: Tuesday, August 11, 2009, 6:30 PM Sunny, I take neurontin, too. I take 300 mg mornings and 800 mgs at night. My doctor once told me that the dose could go as high as 1500 mg for some people but that I was on a lower dose. Nerve pain is awful. I have it constantly in my feet. Sometimes my left arm has a flair-up. My dose has gradually increased since I started on this med. I started with 300 mg. Then was precribed 600 mg at night and 200 mg mornings. There are some other meds that can be prescribed for nerve pain. Maybe you could talk to your doctor about it. Last Saturday,morning I was napping on the recliner in the living room and was rudely awakened by horrible cramps at the same time in both feet. I attributed it to ye old neuropathy. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> Sunny,> I'm so sorry that you are going through this. I can't imagine what is causing it though it's hard to imagine it's a side effect of the fundoplication. Though I suppose it could be part of a reaction to the anesthesia or possibly some type of damage from lack of oxygen at some point? I'm really speculating here cause I have no idea at all.> > Have you been to a neurologist? Please seek out the care of someone who is specialist in dealing with seizure disorders. What tests have they done? > > Know that we are pulling for you here. I hope things get better soon!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Tuesday, August 11, 2009 2:45:47 PM> Subject: Miserable> > > Since my fundo when I went in to 3 hours of Gran Mal Seizures I have been having them pretty regular except not as severe. They put me on Neurontin 300 mg 3 times a day. I am having severe nerve pain in my extremeties as well. Does anyone know if this could be a size effect of the surgery. I am so miserable I just want to die. The pain is wearing me down and I feel so alone. Any input would be nice. I am sorry that I hurt Bruce with my email a while back. Bruce won't you please accept my apology. You know so much and I need help. I can't take anymore.> > Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 I have noticed several who have fibromalgia. I makes one wonder. Or maybe I am behind the curve. Jerry/Mississippi/54/IPF/dx April 05 Who believes that hard times help us appreciate the good times even more. From: Jane <jjarrett (AT) optilink (DOT) us>Subject: Re: MiserableTo: Breathe-Support@ yahoogroups. comDate: Tuesday, August 11, 2009, 6:30 PM Sunny, I take neurontin, too. I take 300 mg mornings and 800 mgs at night. My doctor once told me that the dose could go as high as 1500 mg for some people but that I was on a lower dose. Nerve pain is awful. I have it constantly in my feet. Sometimes my left arm has a flair-up. My dose has gradually increased since I started on this med. I started with 300 mg. Then was precribed 600 mg at night and 200 mg mornings. There are some other meds that can be prescribed for nerve pain. Maybe you could talk to your doctor about it. Last Saturday,morning I was napping on the recliner in the living room and was rudely awakened by horrible cramps at the same time in both feet. I attributed it to ye old neuropathy. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> Sunny,> I'm so sorry that you are going through this. I can't imagine what is causing it though it's hard to imagine it's a side effect of the fundoplication. Though I suppose it could be part of a reaction to the anesthesia or possibly some type of damage from lack of oxygen at some point? I'm really speculating here cause I have no idea at all.> > Have you been to a neurologist? Please seek out the care of someone who is specialist in dealing with seizure disorders. What tests have they done? > > Know that we are pulling for you here. I hope things get better soon!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Tuesday, August 11, 2009 2:45:47 PM> Subject: Miserable> > > Since my fundo when I went in to 3 hours of Gran Mal Seizures I have been having them pretty regular except not as severe. They put me on Neurontin 300 mg 3 times a day. I am having severe nerve pain in my extremeties as well. Does anyone know if this could be a size effect of the surgery. I am so miserable I just want to die. The pain is wearing me down and I feel so alone. Any input would be nice. I am sorry that I hurt Bruce with my email a while back. Bruce won't you please accept my apology. You know so much and I need help. I can't take anymore.> > Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 Jerry, I've had fibromyalgia for over 20 years. I learned to live with it a long time ago. I wish I could say the same for the PFBeverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho From: Jane <jjarrett (AT) optilink (DOT) us>Subject: Re: MiserableTo: Breathe-Support@ yahoogroups. comDate: Tuesday, August 11, 2009, 6:30 PM Sunny, I take neurontin, too. I take 300 mg mornings and 800 mgs at night. My doctor once told me that the dose could go as high as 1500 mg for some people but that I was on a lower dose. Nerve pain is awful. I have it constantly in my feet. Sometimes my left arm has a flair-up. My dose has gradually increased since I started on this med. I started with 300 mg. Then was precribed 600 mg at night and 200 mg mornings. There are some other meds that can be prescribed for nerve pain. Maybe you could talk to your doctor about it. Last Saturday,morning I was napping on the recliner in the living room and was rudely awakened by horrible cramps at the same time in both feet. I attributed it to ye old neuropathy. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> Sunny,> I'm so sorry that you are going through this. I can't imagine what is causing it though it's hard to imagine it's a side effect of the fundoplication. Though I suppose it could be part of a reaction to the anesthesia or possibly some type of damage from lack of oxygen at some point? I'm really speculating here cause I have no idea at all.> > Have you been to a neurologist? Please seek out the care of someone who is specialist in dealing with seizure disorders. What tests have they done? > > Know that we are pulling for you here. I hope things get better soon!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Tuesday, August 11, 2009 2:45:47 PM> Subject: Miserable> > > Since my fundo when I went in to 3 hours of Gran Mal Seizures I have been having them pretty regular except not as severe. They put me on Neurontin 300 mg 3 times a day. I am having severe nerve pain in my extremeties as well. Does anyone know if this could be a size effect of the surgery. I am so miserable I just want to die. The pain is wearing me down and I feel so alone. Any input would be nice. I am sorry that I hurt Bruce with my email a while back. Bruce won't you please accept my apology. You know so much and I need help. I can't take anymore.> > Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 Beverley Joy, I know what you mean. Seems like we have to accept PF and all his friends into the bargin. You do pretty well considering all you have to live with. While I was reading the posts, I noticed that you like to sail. I haven't looked, but I hope you have pictures of your outings. That is so interesting, and I won't read a post from you but what I won't have that peaceful picture of you out on a sialboat in my mind. Hopefully you have been sailing lately during these warmer summer months. I'll think about sailing on my way to sleep tonight. Jerry/Mississippi/54/IPF/dx April 05Who believes that hard times help us appreciate the good times even more. From: Jane <jjarrett (AT) optilink (DOT) us>Subject: Re: MiserableTo: Breathe-Support@ yahoogroups. comDate: Tuesday, August 11, 2009, 6:30 PM Sunny, I take neurontin, too. I take 300 mg mornings and 800 mgs at night. My doctor once told me that the dose could go as high as 1500 mg for some people but that I was on a lower dose. Nerve pain is awful. I have it constantly in my feet. Sometimes my left arm has a flair-up. My dose has gradually increased since I started on this med. I started with 300 mg. Then was precribed 600 mg at night and 200 mg mornings. There are some other meds that can be prescribed for nerve pain. Maybe you could talk to your doctor about it. Last Saturday,morning I was napping on the recliner in the living room and was rudely awakened by horrible cramps at the same time in both feet. I attributed it to ye old neuropathy. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> Sunny,> I'm so sorry that you are going through this. I can't imagine what is causing it though it's hard to imagine it's a side effect of the fundoplication. Though I suppose it could be part of a reaction to the anesthesia or possibly some type of damage from lack of oxygen at some point? I'm really speculating here cause I have no idea at all.> > Have you been to a neurologist? Please seek out the care of someone who is specialist in dealing with seizure disorders. What tests have they done? > > Know that we are pulling for you here. I hope things get better soon!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Tuesday, August 11, 2009 2:45:47 PM> Subject: Miserable> > > Since my fundo when I went in to 3 hours of Gran Mal Seizures I have been having them pretty regular except not as severe. They put me on Neurontin 300 mg 3 times a day. I am having severe nerve pain in my extremeties as well. Does anyone know if this could be a size effect of the surgery. I am so miserable I just want to die. The pain is wearing me down and I feel so alone. Any input would be nice. I am sorry that I hurt Bruce with my email a while back. Bruce won't you please accept my apology. You know so much and I need help. I can't take anymore.> > Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2009 Report Share Posted August 12, 2009 Bob has a 38 ft. sailboat but it is a bit much for us to handle now so we just motor. I love it on the water without the hassle of the sails. I couldn't move fast enough now. Bob has emphysema so breathing is a problem for both of us. Lincare has figured a way that I can go our for at least 4 nights. We did it the first of July. Bob had to go out for a longer time so I went to my daughters for two weeks. We are planning on going again the first of September. After that it will probably be getting a bit cold for me. In talked to my real estate agent today and tomorrow we are going to see what else we can try to sell the house. I tend to wonder what I need him for. I am the one that keeps coming up witth the ideas. My property can go commercial and he hasn't pushed that at all . I think that I will lower the price again and he will put up signs saying that it is reduced. I don't have pictures except of the boat. I have pictures of mama seals and their babies from the marina we used to be at. I miss it. I loves watching those seals.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho From: Jane <jjarrett (AT) optilink (DOT) us>Subject: Re: MiserableTo: Breathe-Support@ yahoogroups. comDate: Tuesday, August 11, 2009, 6:30 PM Sunny, I take neurontin, too. I take 300 mg mornings and 800 mgs at night. My doctor once told me that the dose could go as high as 1500 mg for some people but that I was on a lower dose. Nerve pain is awful. I have it constantly in my feet. Sometimes my left arm has a flair-up. My dose has gradually increased since I started on this med. I started with 300 mg. Then was precribed 600 mg at night and 200 mg mornings. There are some other meds that can be prescribed for nerve pain. Maybe you could talk to your doctor about it. Last Saturday,morning I was napping on the recliner in the living room and was rudely awakened by horrible cramps at the same time in both feet. I attributed it to ye old neuropathy. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> Sunny,> I'm so sorry that you are going through this. I can't imagine what is causing it though it's hard to imagine it's a side effect of the fundoplication. Though I suppose it could be part of a reaction to the anesthesia or possibly some type of damage from lack of oxygen at some point? I'm really speculating here cause I have no idea at all.> > Have you been to a neurologist? Please seek out the care of someone who is specialist in dealing with seizure disorders. What tests have they done? > > Know that we are pulling for you here. I hope things get better soon!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Tuesday, August 11, 2009 2:45:47 PM> Subject: Miserable> > > Since my fundo when I went in to 3 hours of Gran Mal Seizures I have been having them pretty regular except not as severe. They put me on Neurontin 300 mg 3 times a day. I am having severe nerve pain in my extremeties as well. Does anyone know if this could be a size effect of the surgery. I am so miserable I just want to die. The pain is wearing me down and I feel so alone. Any input would be nice. I am sorry that I hurt Bruce with my email a while back. Bruce won't you please accept my apology. You know so much and I need help. I can't take anymore.> > Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho> Quote Link to comment Share on other sites More sharing options...
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