Guest guest Posted November 28, 2007 Report Share Posted November 28, 2007 , I am so sorry, it’s so hard to work with docs who don’t care, and I think in those big hospitals they think of there patients as a number rather then a name that way it’s not personal. When I was going to Nat. Jewish in Denver I felt the same way, I finally told my primary doc that I was not going back there, and he agreed. Sometimes it’s hard to know what to do, sue them or not? We are fighting the insurance company to get some different medication, so far 3 denials as “that” drug is not on the list for neurosarc, OK first show me you even have a list that “NeuroSarc” on it, then show me what drugs are approved, ya none I’m sure, but I think we will Sue if they continue to refuse, as the last line of the letter is always, However, if you’re doctor feels this is medically necessary (no he just wanted to mess with your mind) then you will have to pay for the medication, get out of here. I am just so sorry you are going through this, it is this type of sh_ _ that gets us all depressed, then they get to jump on the oh she’s just depressed wagonJ it never ends, but you be strong girlfriend, hang in there, and fight what you can, I know that takes a lot of energy out of us, but at least we go down fighting, or we might ever win, “Glory Day”, it happens. On the news the other night they showed a mom in her 50s with kids, holding a check for 4 million dollars, that’s what she gets after taxes, but the day before she won the lottery, he house went into foreclosure and she felt doomed. See good things happen to those of us who sometimes feel we are at the end of the road, and then we see the light! One of my silly sayings, as I say all kinds of things I am not thinking. Here’s two for a laugh, first is a few years ago we were having trouble with our oldest son, (Bi-Polar) and I was driving with my husband and I looked ahead and said, “oh look honey there is sun at the end of the tunnel” he started laughing, then told me what I said. Light sun, same thing! The other was really not funny, but I feel like I have turrets syndrome, as the wrong word always seems to find a way out of my mouth, I was doing my Kay business and giving a customer a facial and makeover, and somehow in the conversation I called her a B_ _ _ h, we both looked totally shocked, and I had to talk fast to get out of that one! Now I just warn them if I say something strange, ignore it, my brain tends to talk independently of me lol. I hope I at least caused a smile out of you? Blessing to you, Marla Marla Bramer Independent Beauty Consultant Kay cosmetics mbramer@... www.marykay.com From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of topdat@... Sent: Tuesday, November 27, 2007 7:48 AM To: Neurosarcoidosis Subject: Confrontations, grrrr Hey gang, for some of you newer people you won't know what I'm talking about, but unfortunately I'm afraid you may run into similar problems such as this.. for you older gang, you all know how it is to feel you are not being taken seriously, or they are just not listening.. etc.. I live in Nashville, and go to Vanderbilt hospital, a teaching hospital..where they think they can't be taught anything else, so they don't want any outside help.. they had just as soon let you die.. Several months ago I fired my PCP, because she refused to take my symptoms seriously, I had just had cataract surgery, then a staph infection which prompted 3 more surgeries.. while in the hospital she refused to come see me, because I was hurting from head to toe and I was afraid that I had gone out of remission.. She hated the mere mention of " Sarc " coming out of my mouth and you could actually see her blood boil when I did mention it.. Yesterday my pulmo, which is her partner, has blown me off for the last 5 years..I saw...I told the nurse that they were starting a new sarcoidosis clinic there at the hospital and I wanted a referral there.. that according to what the doctor said that a stage 4 pulmonary sarc has, " Scaring, actelectasis, and low lung volumes. " and though my doctor has never mentioned these to me, I did see a copy of my chest xray and while he told me it was normal, according to the other doctor it was far from normal.. To make an already long story short.. The doctor came in and started to address my issues, and I guess I wasn't in the best of moods.. that I felt like he had blown me off for the last 5 years, that he has never mentioned staging to me, that he tells me evertying is fine when in truth its not, and it didn't take a brain surgeon to see that I couldn't breath.. YIKES!!! His face was a bright red, though he didn't say much, he did agree that I had some valid issues.. now I sit waiting on my letter saying " dont come back " haha it was a huge weight lifted off my shoulders.. I had had enough and soooo the boom got lowered on him.. He called the cardiologist and they are now looking into the possiblitiy of cardiac sarc, my arts were normal but my pressures where high... they've increased my fluid tablets three times the normal dose..He may be trying to kill me ya thing? lol last time they doubled it I went into renal failure, fell and broke both legs, was taken to the er unresponsive.. a nightmare.. If you've made it this far, know its appreciated..if you didn't make it this far.. its ok.. Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2007 Report Share Posted November 28, 2007 , I am so sorry, it’s so hard to work with docs who don’t care, and I think in those big hospitals they think of there patients as a number rather then a name that way it’s not personal. When I was going to Nat. Jewish in Denver I felt the same way, I finally told my primary doc that I was not going back there, and he agreed. Sometimes it’s hard to know what to do, sue them or not? We are fighting the insurance company to get some different medication, so far 3 denials as “that” drug is not on the list for neurosarc, OK first show me you even have a list that “NeuroSarc” on it, then show me what drugs are approved, ya none I’m sure, but I think we will Sue if they continue to refuse, as the last line of the letter is always, However, if you’re doctor feels this is medically necessary (no he just wanted to mess with your mind) then you will have to pay for the medication, get out of here. I am just so sorry you are going through this, it is this type of sh_ _ that gets us all depressed, then they get to jump on the oh she’s just depressed wagonJ it never ends, but you be strong girlfriend, hang in there, and fight what you can, I know that takes a lot of energy out of us, but at least we go down fighting, or we might ever win, “Glory Day”, it happens. On the news the other night they showed a mom in her 50s with kids, holding a check for 4 million dollars, that’s what she gets after taxes, but the day before she won the lottery, he house went into foreclosure and she felt doomed. See good things happen to those of us who sometimes feel we are at the end of the road, and then we see the light! One of my silly sayings, as I say all kinds of things I am not thinking. Here’s two for a laugh, first is a few years ago we were having trouble with our oldest son, (Bi-Polar) and I was driving with my husband and I looked ahead and said, “oh look honey there is sun at the end of the tunnel” he started laughing, then told me what I said. Light sun, same thing! The other was really not funny, but I feel like I have turrets syndrome, as the wrong word always seems to find a way out of my mouth, I was doing my Kay business and giving a customer a facial and makeover, and somehow in the conversation I called her a B_ _ _ h, we both looked totally shocked, and I had to talk fast to get out of that one! Now I just warn them if I say something strange, ignore it, my brain tends to talk independently of me lol. I hope I at least caused a smile out of you? Blessing to you, Marla Marla Bramer Independent Beauty Consultant Kay cosmetics mbramer@... www.marykay.com From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of topdat@... Sent: Tuesday, November 27, 2007 7:48 AM To: Neurosarcoidosis Subject: Confrontations, grrrr Hey gang, for some of you newer people you won't know what I'm talking about, but unfortunately I'm afraid you may run into similar problems such as this.. for you older gang, you all know how it is to feel you are not being taken seriously, or they are just not listening.. etc.. I live in Nashville, and go to Vanderbilt hospital, a teaching hospital..where they think they can't be taught anything else, so they don't want any outside help.. they had just as soon let you die.. Several months ago I fired my PCP, because she refused to take my symptoms seriously, I had just had cataract surgery, then a staph infection which prompted 3 more surgeries.. while in the hospital she refused to come see me, because I was hurting from head to toe and I was afraid that I had gone out of remission.. She hated the mere mention of " Sarc " coming out of my mouth and you could actually see her blood boil when I did mention it.. Yesterday my pulmo, which is her partner, has blown me off for the last 5 years..I saw...I told the nurse that they were starting a new sarcoidosis clinic there at the hospital and I wanted a referral there.. that according to what the doctor said that a stage 4 pulmonary sarc has, " Scaring, actelectasis, and low lung volumes. " and though my doctor has never mentioned these to me, I did see a copy of my chest xray and while he told me it was normal, according to the other doctor it was far from normal.. To make an already long story short.. The doctor came in and started to address my issues, and I guess I wasn't in the best of moods.. that I felt like he had blown me off for the last 5 years, that he has never mentioned staging to me, that he tells me evertying is fine when in truth its not, and it didn't take a brain surgeon to see that I couldn't breath.. YIKES!!! His face was a bright red, though he didn't say much, he did agree that I had some valid issues.. now I sit waiting on my letter saying " dont come back " haha it was a huge weight lifted off my shoulders.. I had had enough and soooo the boom got lowered on him.. He called the cardiologist and they are now looking into the possiblitiy of cardiac sarc, my arts were normal but my pressures where high... they've increased my fluid tablets three times the normal dose..He may be trying to kill me ya thing? lol last time they doubled it I went into renal failure, fell and broke both legs, was taken to the er unresponsive.. a nightmare.. If you've made it this far, know its appreciated..if you didn't make it this far.. its ok.. Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2007 Report Share Posted November 28, 2007 Marla, it totally brough a smile.. I do the same thing, but I speak backwards sometimes and I don't realize it until someone looks at me really crazy.. then I ask.. what did I say? They tell me and I have to try again..and of course my son if the first to tell me that I forgot to do something or if he thinks he told me something, then when he's missing in action and I get upset, he uses the excuse.. oh mom you just forgot.. hmm That one particurally has gotten really really old.. lol But thanks for the encouragement, and for the smile.. Hugs, RE: hang in there , I am so sorry, it’s so hard to work with docs who don’t care, and I think in those big hospitals they think of there patients as a number rather then a name that way it’s not personal. When I was going to Nat. Jewish in Denver I felt the same way, I finally told my primary doc that I was not going back there, and he agreed. Sometimes it’s hard to know what to do, sue them or not? We are fighting the insurance company to get some different medication, so far 3 denials as “that” drug is not on the list for neurosarc, OK first show me you even have a list that “NeuroSarc” on it, then show me what drugs are approved, ya none I’m sure, but I think we will Sue if they continue to refuse, as the last line of the letter is always, However, if you’re doctor feels this is medically necessary (no he just wanted to mess with your mind) then you will have to pay for the medication, get out of here. I am just so sorry you are going through this, it is this type of sh_ _ that gets us all depressed, then they get to jump on the oh she’s just depressed wagonJ it never ends, but you be strong girlfriend, hang in there, and fight what you can, I know that takes a lot of energy out of us, but at least we go down fighting, or we might ever win, “Glory Day”, it happens. On the news the other night they showed a mom in her 50s with kids, holding a check for 4 million dollars, that’s what she gets after taxes, but the day before she won the lottery, he house went into foreclosure and she felt doomed. See good things happen to those of us who sometimes feel we are at the end of the road, and then we see the light! One of my silly sayings, as I say all kinds of things I am not thinking. Here’s two for a laugh, first is a few years ago we were having trouble with our oldest son, (Bi-Polar) and I was driving with my husband and I looked ahead and said, “oh look honey there is sun at the end of the tunnel” he started laughing, then told me what I said. Light sun, same thing! The other was really not funny, but I feel like I have turrets syndrome, as the wrong word always seems to find a way out of my mouth, I was doing my Kay business and giving a customer a facial and makeover, and somehow in the conversation I called her a B_ _ _ h, we both looked totally shocked, and I had to talk fast to get out of that one! Now I just warn them if I say something strange, ignore it, my brain tends to talk independently of me lol. I hope I at least caused a smile out of you? Blessing to you, Marla Marla Bramer Independent Beauty Consultant Kay cosmetics mbramer (AT) marykay (DOT) com www.marykay.com From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of topdat (AT) bellsouth (DOT) netSent: Tuesday, November 27, 2007 7:48 AMTo: Neurosarcoidosis Subject: Confrontations, grrrr Hey gang, for some of you newer people you won't know what I'm talking about, but unfortunately I'm afraid you may run into similar problems such as this.. for you older gang, you all know how it is to feel you are not being taken seriously, or they are just not listening.. etc.. I live in Nashville, and go to Vanderbilt hospital, a teaching hospital..where they think they can't be taught anything else, so they don't want any outside help.. they had just as soon let you die.. Several months ago I fired my PCP, because she refused to take my symptoms seriously, I had just had cataract surgery, then a staph infection which prompted 3 more surgeries.. while in the hospital she refused to come see me, because I was hurting from head to toe and I was afraid that I had gone out of remission.. She hated the mere mention of "Sarc" coming out of my mouth and you could actually see her blood boil when I did mention it.. Yesterday my pulmo, which is her partner, has blown me off for the last 5 years..I saw...I told the nurse that they were starting a new sarcoidosis clinic there at the hospital and I wanted a referral there.. that according to what the doctor said that a stage 4 pulmonary sarc has, "Scaring, actelectasis, and low lung volumes." and though my doctor has never mentioned these to me, I did see a copy of my chest xray and while he told me it was normal, according to the other doctor it was far from normal.. To make an already long story short.. The doctor came in and started to address my issues, and I guess I wasn't in the best of moods.. that I felt like he had blown me off for the last 5 years, that he has never mentioned staging to me, that he tells me evertying is fine when in truth its not, and it didn't take a brain surgeon to see that I couldn't breath.. YIKES!!! His face was a bright red, though he didn't say much, he did agree that I had some valid issues.. now I sit waiting on my letter saying " dont come back" haha it was a huge weight lifted off my shoulders.. I had had enough and soooo the boom got lowered on him.. He called the cardiologist and they are now looking into the possiblitiy of cardiac sarc, my arts were normal but my pressures where high... they've increased my fluid tablets three times the normal dose..He may be trying to kill me ya thing? lol last time they doubled it I went into renal failure, fell and broke both legs, was taken to the er unresponsive.. a nightmare.. If you've made it this far, know its appreciated..if you didn't make it this far.. its ok.. Hugs, No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.16.9/1155 - Release Date: 11/27/2007 8:30 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2007 Report Share Posted November 28, 2007 Marla, it totally brough a smile.. I do the same thing, but I speak backwards sometimes and I don't realize it until someone looks at me really crazy.. then I ask.. what did I say? They tell me and I have to try again..and of course my son if the first to tell me that I forgot to do something or if he thinks he told me something, then when he's missing in action and I get upset, he uses the excuse.. oh mom you just forgot.. hmm That one particurally has gotten really really old.. lol But thanks for the encouragement, and for the smile.. Hugs, RE: hang in there , I am so sorry, it’s so hard to work with docs who don’t care, and I think in those big hospitals they think of there patients as a number rather then a name that way it’s not personal. When I was going to Nat. Jewish in Denver I felt the same way, I finally told my primary doc that I was not going back there, and he agreed. Sometimes it’s hard to know what to do, sue them or not? We are fighting the insurance company to get some different medication, so far 3 denials as “that” drug is not on the list for neurosarc, OK first show me you even have a list that “NeuroSarc” on it, then show me what drugs are approved, ya none I’m sure, but I think we will Sue if they continue to refuse, as the last line of the letter is always, However, if you’re doctor feels this is medically necessary (no he just wanted to mess with your mind) then you will have to pay for the medication, get out of here. I am just so sorry you are going through this, it is this type of sh_ _ that gets us all depressed, then they get to jump on the oh she’s just depressed wagonJ it never ends, but you be strong girlfriend, hang in there, and fight what you can, I know that takes a lot of energy out of us, but at least we go down fighting, or we might ever win, “Glory Day”, it happens. On the news the other night they showed a mom in her 50s with kids, holding a check for 4 million dollars, that’s what she gets after taxes, but the day before she won the lottery, he house went into foreclosure and she felt doomed. See good things happen to those of us who sometimes feel we are at the end of the road, and then we see the light! One of my silly sayings, as I say all kinds of things I am not thinking. Here’s two for a laugh, first is a few years ago we were having trouble with our oldest son, (Bi-Polar) and I was driving with my husband and I looked ahead and said, “oh look honey there is sun at the end of the tunnel” he started laughing, then told me what I said. Light sun, same thing! The other was really not funny, but I feel like I have turrets syndrome, as the wrong word always seems to find a way out of my mouth, I was doing my Kay business and giving a customer a facial and makeover, and somehow in the conversation I called her a B_ _ _ h, we both looked totally shocked, and I had to talk fast to get out of that one! Now I just warn them if I say something strange, ignore it, my brain tends to talk independently of me lol. I hope I at least caused a smile out of you? Blessing to you, Marla Marla Bramer Independent Beauty Consultant Kay cosmetics mbramer (AT) marykay (DOT) com www.marykay.com From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of topdat (AT) bellsouth (DOT) netSent: Tuesday, November 27, 2007 7:48 AMTo: Neurosarcoidosis Subject: Confrontations, grrrr Hey gang, for some of you newer people you won't know what I'm talking about, but unfortunately I'm afraid you may run into similar problems such as this.. for you older gang, you all know how it is to feel you are not being taken seriously, or they are just not listening.. etc.. I live in Nashville, and go to Vanderbilt hospital, a teaching hospital..where they think they can't be taught anything else, so they don't want any outside help.. they had just as soon let you die.. Several months ago I fired my PCP, because she refused to take my symptoms seriously, I had just had cataract surgery, then a staph infection which prompted 3 more surgeries.. while in the hospital she refused to come see me, because I was hurting from head to toe and I was afraid that I had gone out of remission.. She hated the mere mention of "Sarc" coming out of my mouth and you could actually see her blood boil when I did mention it.. Yesterday my pulmo, which is her partner, has blown me off for the last 5 years..I saw...I told the nurse that they were starting a new sarcoidosis clinic there at the hospital and I wanted a referral there.. that according to what the doctor said that a stage 4 pulmonary sarc has, "Scaring, actelectasis, and low lung volumes." and though my doctor has never mentioned these to me, I did see a copy of my chest xray and while he told me it was normal, according to the other doctor it was far from normal.. To make an already long story short.. The doctor came in and started to address my issues, and I guess I wasn't in the best of moods.. that I felt like he had blown me off for the last 5 years, that he has never mentioned staging to me, that he tells me evertying is fine when in truth its not, and it didn't take a brain surgeon to see that I couldn't breath.. YIKES!!! His face was a bright red, though he didn't say much, he did agree that I had some valid issues.. now I sit waiting on my letter saying " dont come back" haha it was a huge weight lifted off my shoulders.. I had had enough and soooo the boom got lowered on him.. He called the cardiologist and they are now looking into the possiblitiy of cardiac sarc, my arts were normal but my pressures where high... they've increased my fluid tablets three times the normal dose..He may be trying to kill me ya thing? lol last time they doubled it I went into renal failure, fell and broke both legs, was taken to the er unresponsive.. a nightmare.. If you've made it this far, know its appreciated..if you didn't make it this far.. its ok.. Hugs, No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.16.9/1155 - Release Date: 11/27/2007 8:30 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 I just warn them if I say something strange, ignore it, my brain tends to talk independently of me lol. LOL! This is a big one for me also-- it's like my mind and my mouth have different objectives (adjectives and verbs also) and it is not a good thing! I have a topper for Marla, I called my boss a prick-- and sat there explaining that the difference between the owner of a BMW and a cactus is that with the cactus, the pricks are on the outside. OOOPS. Forget that raise--- LOL, TracieCheck out AOL Money Finance's list of the hottest products and top money wasters of 2007. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 I just warn them if I say something strange, ignore it, my brain tends to talk independently of me lol. LOL! This is a big one for me also-- it's like my mind and my mouth have different objectives (adjectives and verbs also) and it is not a good thing! I have a topper for Marla, I called my boss a prick-- and sat there explaining that the difference between the owner of a BMW and a cactus is that with the cactus, the pricks are on the outside. OOOPS. Forget that raise--- LOL, TracieCheck out AOL Money Finance's list of the hottest products and top money wasters of 2007. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2007 Report Share Posted December 2, 2007 Hi guys, I have the same issues. One of my problems is that I start a sentence and then halfway through can't find the word or the gist of what I am trying to say, so the first part of my sentence just hangs there. I struggle to continue but people usually have to guess and finish what I am trying to say for me. They look at me kind of funny. It's very embarrasing. I also forget all the time when my kids or husband tells me something (just like you Marla). My kids will tell me they are going somewhere and I can't remember what they said or when. Or my husband tells me he is not coming home for lunch and I go and make something for him and it sits there, because I forgot that he told me he wasn't coming home. This is all very frustrating and makes me feel so foolish all the time. Debbie T. Co-Moderator Confrontations, grrrr Hey gang, for some of you newer people you won't know what I'm talking about, but unfortunately I'm afraid you may run into similar problems such as this.. for you older gang, you all know how it is to feel you are not being taken seriously, or they are just not listening.. etc.. I live in Nashville , and go to Vanderbilt hospital, a teaching hospital..where they think they can't be taught anything else, so they don't want any outside help.. they had just as soon let you die.. Several months ago I fired my PCP, because she refused to take my symptoms seriously, I had just had cataract surgery, then a staph infection which prompted 3 more surgeries.. while in the hospital she refused to come see me, because I was hurting from head to toe and I was afraid that I had gone out of remission.. She hated the mere mention of "Sarc" coming out of my mouth and you could actually see her blood boil when I did mention it.. Yesterday my pulmo, which is her partner, has blown me off for the last 5 years..I saw...I told the nurse that they were starting a new sarcoidosis clinic there at the hospital and I wanted a referral there.. that according to what the doctor said that a stage 4 pulmonary sarc has, "Scaring, actelectasis, and low lung volumes." and though my doctor has never mentioned these to me, I did see a copy of my chest xray and while he told me it was normal, according to the other doctor it was far from normal.. To make an already long story short.. The doctor came in and started to address my issues, and I guess I wasn't in the best of moods.. that I felt like he had blown me off for the last 5 years, that he has never mentioned staging to me, that he tells me evertying is fine when in truth its not, and it didn't take a brain surgeon to see that I couldn't breath.. YIKES!!! His face was a bright red, though he didn't say much, he did agree that I had some valid issues.. now I sit waiting on my letter saying " dont come back" haha it was a huge weight lifted off my shoulders.. I had had enough and soooo the boom got lowered on him.. He called the cardiologist and they are now looking into the possiblitiy of cardiac sarc, my arts were normal but my pressures where high... they've increased my fluid tablets three times the normal dose..He may be trying to kill me ya thing? lol last time they doubled it I went into renal failure, fell and broke both legs, was taken to the er unresponsive. . a nightmare.. If you've made it this far, know its appreciated. .if you didn't make it this far.. its ok.. Hugs, No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.16.9/1155 - Release Date: 11/27/2007 8:30 PM Be a better pen pal. Text or chat with friends inside Yahoo! Mail. See how. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2007 Report Share Posted December 2, 2007 Hi guys, I have the same issues. One of my problems is that I start a sentence and then halfway through can't find the word or the gist of what I am trying to say, so the first part of my sentence just hangs there. I struggle to continue but people usually have to guess and finish what I am trying to say for me. They look at me kind of funny. It's very embarrasing. I also forget all the time when my kids or husband tells me something (just like you Marla). My kids will tell me they are going somewhere and I can't remember what they said or when. Or my husband tells me he is not coming home for lunch and I go and make something for him and it sits there, because I forgot that he told me he wasn't coming home. This is all very frustrating and makes me feel so foolish all the time. Debbie T. Co-Moderator Confrontations, grrrr Hey gang, for some of you newer people you won't know what I'm talking about, but unfortunately I'm afraid you may run into similar problems such as this.. for you older gang, you all know how it is to feel you are not being taken seriously, or they are just not listening.. etc.. I live in Nashville , and go to Vanderbilt hospital, a teaching hospital..where they think they can't be taught anything else, so they don't want any outside help.. they had just as soon let you die.. Several months ago I fired my PCP, because she refused to take my symptoms seriously, I had just had cataract surgery, then a staph infection which prompted 3 more surgeries.. while in the hospital she refused to come see me, because I was hurting from head to toe and I was afraid that I had gone out of remission.. She hated the mere mention of "Sarc" coming out of my mouth and you could actually see her blood boil when I did mention it.. Yesterday my pulmo, which is her partner, has blown me off for the last 5 years..I saw...I told the nurse that they were starting a new sarcoidosis clinic there at the hospital and I wanted a referral there.. that according to what the doctor said that a stage 4 pulmonary sarc has, "Scaring, actelectasis, and low lung volumes." and though my doctor has never mentioned these to me, I did see a copy of my chest xray and while he told me it was normal, according to the other doctor it was far from normal.. To make an already long story short.. The doctor came in and started to address my issues, and I guess I wasn't in the best of moods.. that I felt like he had blown me off for the last 5 years, that he has never mentioned staging to me, that he tells me evertying is fine when in truth its not, and it didn't take a brain surgeon to see that I couldn't breath.. YIKES!!! His face was a bright red, though he didn't say much, he did agree that I had some valid issues.. now I sit waiting on my letter saying " dont come back" haha it was a huge weight lifted off my shoulders.. I had had enough and soooo the boom got lowered on him.. He called the cardiologist and they are now looking into the possiblitiy of cardiac sarc, my arts were normal but my pressures where high... they've increased my fluid tablets three times the normal dose..He may be trying to kill me ya thing? lol last time they doubled it I went into renal failure, fell and broke both legs, was taken to the er unresponsive. . a nightmare.. If you've made it this far, know its appreciated. .if you didn't make it this far.. its ok.. Hugs, No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.16.9/1155 - Release Date: 11/27/2007 8:30 PM Be a better pen pal. Text or chat with friends inside Yahoo! Mail. See how. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2007 Report Share Posted December 2, 2007 Debbie I will let you know if O.T. helps at all. So far I think we are still in the testing process trying to figure out what I need help with. Marla Marla Bramer Independent Beauty Consultant Kay cosmetics mbramer@... www.marykay.com From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Debbie Sent: Sunday, December 02, 2007 5:35 AM To: Neurosarcoidosis Subject: Re: hang in there Hi guys, I have the same issues. One of my problems is that I start a sentence and then halfway through can't find the word or the gist of what I am trying to say, so the first part of my sentence just hangs there. I struggle to continue but people usually have to guess and finish what I am trying to say for me. They look at me kind of funny. It's very embarrasing. I also forget all the time when my kids or husband tells me something (just like you Marla). My kids will tell me they are going somewhere and I can't remember what they said or when. Or my husband tells me he is not coming home for lunch and I go and make something for him and it sits there, because I forgot that he told me he wasn't coming home. This is all very frustrating and makes me feel so foolish all the time. Debbie T. Co-Moderator Confrontations, grrrr Hey gang, for some of you newer people you won't know what I'm talking about, but unfortunately I'm afraid you may run into similar problems such as this.. for you older gang, you all know how it is to feel you are not being taken seriously, or they are just not listening.. etc.. I live in Nashville , and go to Vanderbilt hospital, a teaching hospital..where they think they can't be taught anything else, so they don't want any outside help.. they had just as soon let you die.. Several months ago I fired my PCP, because she refused to take my symptoms seriously, I had just had cataract surgery, then a staph infection which prompted 3 more surgeries.. while in the hospital she refused to come see me, because I was hurting from head to toe and I was afraid that I had gone out of remission.. She hated the mere mention of " Sarc " coming out of my mouth and you could actually see her blood boil when I did mention it.. Yesterday my pulmo, which is her partner, has blown me off for the last 5 years..I saw...I told the nurse that they were starting a new sarcoidosis clinic there at the hospital and I wanted a referral there.. that according to what the doctor said that a stage 4 pulmonary sarc has, " Scaring, actelectasis, and low lung volumes. " and though my doctor has never mentioned these to me, I did see a copy of my chest xray and while he told me it was normal, according to the other doctor it was far from normal.. To make an already long story short.. The doctor came in and started to address my issues, and I guess I wasn't in the best of moods.. that I felt like he had blown me off for the last 5 years, that he has never mentioned staging to me, that he tells me evertying is fine when in truth its not, and it didn't take a brain surgeon to see that I couldn't breath.. YIKES!!! His face was a bright red, though he didn't say much, he did agree that I had some valid issues.. now I sit waiting on my letter saying " dont come back " haha it was a huge weight lifted off my shoulders.. I had had enough and soooo the boom got lowered on him.. He called the cardiologist and they are now looking into the possiblitiy of cardiac sarc, my arts were normal but my pressures where high... they've increased my fluid tablets three times the normal dose..He may be trying to kill me ya thing? lol last time they doubled it I went into renal failure, fell and broke both legs, was taken to the er unresponsive. . a nightmare.. If you've made it this far, know its appreciated. .if you didn't make it this far.. its ok.. Hugs, No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.16.9/1155 - Release Date: 11/27/2007 8:30 PM Be a better pen pal. Text or chat with friends inside Yahoo! Mail. See how. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2007 Report Share Posted December 2, 2007 Debbie I will let you know if O.T. helps at all. So far I think we are still in the testing process trying to figure out what I need help with. Marla Marla Bramer Independent Beauty Consultant Kay cosmetics mbramer@... www.marykay.com From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Debbie Sent: Sunday, December 02, 2007 5:35 AM To: Neurosarcoidosis Subject: Re: hang in there Hi guys, I have the same issues. One of my problems is that I start a sentence and then halfway through can't find the word or the gist of what I am trying to say, so the first part of my sentence just hangs there. I struggle to continue but people usually have to guess and finish what I am trying to say for me. They look at me kind of funny. It's very embarrasing. I also forget all the time when my kids or husband tells me something (just like you Marla). My kids will tell me they are going somewhere and I can't remember what they said or when. Or my husband tells me he is not coming home for lunch and I go and make something for him and it sits there, because I forgot that he told me he wasn't coming home. This is all very frustrating and makes me feel so foolish all the time. Debbie T. Co-Moderator Confrontations, grrrr Hey gang, for some of you newer people you won't know what I'm talking about, but unfortunately I'm afraid you may run into similar problems such as this.. for you older gang, you all know how it is to feel you are not being taken seriously, or they are just not listening.. etc.. I live in Nashville , and go to Vanderbilt hospital, a teaching hospital..where they think they can't be taught anything else, so they don't want any outside help.. they had just as soon let you die.. Several months ago I fired my PCP, because she refused to take my symptoms seriously, I had just had cataract surgery, then a staph infection which prompted 3 more surgeries.. while in the hospital she refused to come see me, because I was hurting from head to toe and I was afraid that I had gone out of remission.. She hated the mere mention of " Sarc " coming out of my mouth and you could actually see her blood boil when I did mention it.. Yesterday my pulmo, which is her partner, has blown me off for the last 5 years..I saw...I told the nurse that they were starting a new sarcoidosis clinic there at the hospital and I wanted a referral there.. that according to what the doctor said that a stage 4 pulmonary sarc has, " Scaring, actelectasis, and low lung volumes. " and though my doctor has never mentioned these to me, I did see a copy of my chest xray and while he told me it was normal, according to the other doctor it was far from normal.. To make an already long story short.. The doctor came in and started to address my issues, and I guess I wasn't in the best of moods.. that I felt like he had blown me off for the last 5 years, that he has never mentioned staging to me, that he tells me evertying is fine when in truth its not, and it didn't take a brain surgeon to see that I couldn't breath.. YIKES!!! His face was a bright red, though he didn't say much, he did agree that I had some valid issues.. now I sit waiting on my letter saying " dont come back " haha it was a huge weight lifted off my shoulders.. I had had enough and soooo the boom got lowered on him.. He called the cardiologist and they are now looking into the possiblitiy of cardiac sarc, my arts were normal but my pressures where high... they've increased my fluid tablets three times the normal dose..He may be trying to kill me ya thing? lol last time they doubled it I went into renal failure, fell and broke both legs, was taken to the er unresponsive. . a nightmare.. If you've made it this far, know its appreciated. .if you didn't make it this far.. its ok.. Hugs, No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.16.9/1155 - Release Date: 11/27/2007 8:30 PM Be a better pen pal. Text or chat with friends inside Yahoo! Mail. See how. Quote Link to comment Share on other sites More sharing options...
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