Re: Fustrated

[Guest guest]

Hi Cinder, I am a bit foggy now, but if I read right, I hope when you see the doc you can get some pain meds.Hugs, ny From: Cinder <datagrey@...> Sent: Mon, August 2, 2010 10:15:19 AMSubject: [ ] Fustrated

Hi Well My GP that I had left a message with about me being in pain and wanted referred to a pain management called this morning to tell me I had a appt next week with her. She contacted the arthritis doc again and now they contacted me again talking to me about well we tried to get you to do all our meds and you turned them all down. well yeah they are all chemo therapy that will raise my viral loads so much that the hep doc won't be able to keep track of my readings. She did not want me to take the chemo they had. I can't afford to do their chemo and turn around and do the hep chemo. Crap. I can't drive myself to Kansas city. My doc seems to be against me getting anything for pain. I am in pain. The chemo will help maybe slow my arthritis but will it help with my pain??? no not really just slows the arthritis.

Next week when I see my GP she will see me after work so hopefully I will be hurting bad by then so she can see how bad the pain is. I won't take any pain meds that night. Getting sick of people playing like they know more about our pain than us. The RA docs nurse asked doesn't that Trammadol do any good. I said well sometimes. Sometimes the pain is worse sometimes it doesn't hurt as bad. Everyone has good and bad days. I am so mad. They act like I am some kind of drug addict or something if I ask for some help with my pain other than chemo. Why? I just want to work without feeling like crying all the time because it hurts like someone ran me over with a truck.

[Guest guest]

I hope so. I hope you get to feeling better too. Love

From: Barrett <barrjohnm@...>Subject: Re: [ ] Fustrated Date: Monday, August 2, 2010, 4:32 PM

Hi Cinder, I am a bit foggy now, but if I read right, I hope when you see the doc you can get some pain meds.Hugs, ny

From: Cinder <datagrey (DOT) com> Sent: Mon, August 2, 2010 10:15:19 AMSubject: [ ] Fustrated

Hi Well My GP that I had left a message with about me being in pain and wanted referred to a pain management called this morning to tell me I had a appt next week with her. She contacted the arthritis doc again and now they contacted me again talking to me about well we tried to get you to do all our meds and you turned them all down. well yeah they are all chemo therapy that will raise my viral loads so much that the hep doc won't be able to keep track of my readings. She did not want me to take the chemo they had. I can't afford to do their chemo and turn around and do the hep chemo. Crap. I can't drive myself to Kansas city. My doc seems to be against me getting anything for pain. I am in pain. The chemo will help maybe slow my arthritis but will it help with my pain??? no not really just slows the arthritis. Next week when I see my GP she will see me after work so hopefully I will be hurting bad by then so she can see how bad the pain is. I

won't take any pain meds that night. Getting sick of people playing like they know more about our pain than us. The RA docs nurse asked doesn't that Trammadol do any good. I said well sometimes. Sometimes the pain is worse sometimes it doesn't hurt as bad. Everyone has good and bad days. I am so mad. They act like I am some kind of drug addict or something if I ask for some help with my pain other than chemo. Why? I just want to work without feeling like crying all the time because it hurts like someone ran me over with a truck.

[Guest guest]

Cinder, honey.... breathe. I can give you an honest answer to why your doctors are very hesitant about pain meds in 6 words.MICHAEL JACKSON AND ANNA NICOLE SMITHThose two deaths have put the fear of God into the minds of most all doctors right now. The doctors who provided drugs to those people are being put on trial for their deaths. I believe one of the doctors involved in the case has lost her license to practice. It is now much harder to get pain relief from doctors. They are very cautious and yes, you have to prove to them that you are in pain and then that you are not over taking those drugs.

That is what has happened because a couple of high profile people abused the system and died. Hope that makes the situation make a little more sense. But that is what we are up against right now.Hugs,Teri From: Cinder <datagrey@...> Sent: Mon, August 2, 2010 3:15:19 PMSubject: [ ] Fustrated

Hi Well My GP that I had left a message with about me being in pain and wanted referred to a pain management called this morning to tell me I had a appt next week with her. She contacted the arthritis doc again and now they contacted me again talking to me about well we tried to get you to do all our meds and you turned them all down. well yeah they are all chemo therapy that will raise my viral loads so much that the hep doc won't be able to keep track of my readings. She did not want me to take the chemo they had. I can't afford to do their chemo and turn around and do the hep chemo. Crap. I can't drive myself to Kansas city. My doc seems to be against me getting anything for pain. I am in pain. The chemo will help maybe slow my arthritis but will it help with my pain??? no not really just slows the arthritis.

Next week when I see my GP she will see me after work so hopefully I will be hurting bad by then so she can see how bad the pain is. I won't take any pain meds that night. Getting sick of people playing like they know more about our pain than us. The RA docs nurse asked doesn't that Trammadol do any good. I said well sometimes. Sometimes the pain is worse sometimes it doesn't hurt as bad. Everyone has good and bad days. I am so mad. They act like I am some kind of drug addict or something if I ask for some help with my pain other than chemo. Why? I just want to work without feeling like crying all the time because it hurts like someone ran me over with a truck.

[Guest guest]

Yep only the legal drug addicts can get the pain meds not those of us who really need it. I am speaking from experince, I live right next door to one, my son-in-law is another one.

From: Barrett <barrjohnm@...>Subject: Re: [ ] Fustrated Date: Monday, August 2, 2010, 5:32 PM

Hi Cinder, I am a bit foggy now, but if I read right, I hope when you see the doc you can get some pain meds.Hugs, ny

From: Cinder <datagrey (DOT) com> Sent: Mon, August 2, 2010 10:15:19 AMSubject: [ ] Fustrated

Hi Well My GP that I had left a message with about me being in pain and wanted referred to a pain management called this morning to tell me I had a appt next week with her. She contacted the arthritis doc again and now they contacted me again talking to me about well we tried to get you to do all our meds and you turned them all down. well yeah they are all chemo therapy that will raise my viral loads so much that the hep doc won't be able to keep track of my readings. She did not want me to take the chemo they had. I can't afford to do their chemo and turn around and do the hep chemo. Crap. I can't drive myself to Kansas city. My doc seems to be against me getting anything for pain. I am in pain. The chemo will help maybe slow my arthritis but will it help with my pain??? no not really just slows the arthritis. Next week when I see my GP she will see me after work so hopefully I will be hurting bad by then so she can see how bad the pain is. I

won't take any pain meds that night. Getting sick of people playing like they know more about our pain than us. The RA docs nurse asked doesn't that Trammadol do any good. I said well sometimes. Sometimes the pain is worse sometimes it doesn't hurt as bad. Everyone has good and bad days. I am so mad. They act like I am some kind of drug addict or something if I ask for some help with my pain other than chemo. Why? I just want to work without feeling like crying all the time because it hurts like someone ran me over with a truck.

[Guest guest]

Responding to the last paragraph about how the docs behave I think it is that stigma thing that you must be a iv drug user and thats why you have hepititisis. So you get what you get. That is how I think they feel, even though they cant really say how we got it or where it came from. Me I think my is from a hospital! Where do you get staff infection? From the hospital! Dont get me on my box I still deal with anger issues from this. But you need your doctors help to work if they want to get paid and you probley need to tell them that.

From: Cinder <datagrey@...>Subject: [ ] Fustrated Date: Monday, August 2, 2010, 4:15 PM

Hi Well My GP that I had left a message with about me being in pain and wanted referred to a pain management called this morning to tell me I had a appt next week with her. She contacted the arthritis doc again and now they contacted me again talking to me about well we tried to get you to do all our meds and you turned them all down. well yeah they are all chemo therapy that will raise my viral loads so much that the hep doc won't be able to keep track of my readings. She did not want me to take the chemo they had. I can't afford to do their chemo and turn around and do the hep chemo. Crap. I can't drive myself to Kansas city. My doc seems to be against me getting anything for pain. I am in pain. The chemo will help maybe slow my arthritis but will it help with my pain??? no not really just slows the arthritis. Next week when I see my GP she will see me after work so hopefully I will be hurting bad by then so she can see how bad the pain is. I

won't take any pain meds that night. Getting sick of people playing like they know more about our pain than us. The RA docs nurse asked doesn't that Trammadol do any good. I said well sometimes. Sometimes the pain is worse sometimes it doesn't hurt as bad. Everyone has good and bad days. I am so mad. They act like I am some kind of drug addict or something if I ask for some help with my pain other than chemo. Why? I just want to work without feeling like crying all the time because it hurts like someone ran me over with a truck.

[Guest guest]

Beth,You are so right on this one. Yes, more people go into a hospital for something minor and wind up dying from a staph infection that they got from the hospital. It happens all the time. When I was diagnosed, my doc immediately went to my years working in a hospital and the labs I worked with and asked me if I ever stuck myself accidentally with a needle. My response "haven't you?" I can't count the times I got stuck. So they immediately thought that was where it came from. Then came the biopsy and the timing was all off. It was off by 10 years to have gotten it when I was working. But it was right on the money for when I had my son and they hung 5 units of untested blood. 1980. I hate when

they assume this virus comes only from IV drug use. It can come from that, sure. And I don't buy for one minute that Pam got hers by sharing tattoo needle with Tommy Lee.... maybe another needle or a rolled up hundred dollar bill that they used to do lines with. But this virus can be transmitted other ways than by IV drug use and I wish that stigma would go away. I hate it. All we can do is educate people we come in contact with. For now, that's our best defense.Hugs,TeriFrom: Beth Frey <bethfrey42301@...> Sent: Mon, August 2, 2010 6:23:25 PMSubject: Re: [ ] Fustrated

Responding to the last paragraph about how the docs behave I think it is that stigma thing that you must be a iv drug user and thats why you have hepititisis. So you get what you get. That is how I think they feel, even though they cant really say how we got it or where it came from. Me I think my is from a hospital! Where do you get staff infection? From the hospital! Dont get me on my box I still deal with anger issues from this. But you need your doctors help to work if they want to get paid and you probley need to tell them that.

From: Cinder <datagrey (DOT) com>Subject: [ ] Fustrated Date: Monday, August 2, 2010, 4:15 PM

Hi Well My GP that I had left a message with about me being in pain and wanted referred to a pain management called this morning to tell me I had a appt next week with her. She contacted the arthritis doc again and now they contacted me again talking to me about well we tried to get you to do all our meds and you turned them all down. well yeah they are all chemo therapy that will raise my viral loads so much that the hep doc won't be able to keep track of my readings. She did not want me to take the chemo they had. I can't afford to do their chemo and turn around and do the hep chemo. Crap. I can't drive myself to Kansas city. My doc seems to be against me getting anything for pain. I am in pain. The chemo will help maybe slow my arthritis but will it help with my pain??? no not really just slows the arthritis. Next week when I see my GP she will see me after work so hopefully I will be hurting bad by then so she can see how bad the pain is. I

won't take any pain meds that night. Getting sick of people playing like they know more about our pain than us. The RA docs nurse asked doesn't that Trammadol do any good. I said well sometimes. Sometimes the pain is worse sometimes it doesn't hurt as bad. Everyone has good and bad days. I am so mad. They act like I am some kind of drug addict or something if I ask for some help with my pain other than chemo. Why? I just want to work without feeling like crying all the time because it hurts like someone ran me over with a truck.

[Guest guest]

Why do you think that all these "pain" meds are some form of chemo?? I'm just not understanding that at all. My brother literally has to take morhpine etc. for his pain from "myofacial" pain syndrome. From everything that I can understand - this is an even more debilitating pain than the Fibromyalgia. However, he will begin treatment in September for his Genotype 3 HepC. Quite simply, they can not take away his pain pills, period. The other thing that I really wanted to ask you earlier was - do you not know anyone that could take you back and forth to Kansas City for treatment?? Is there anything like a bus or van

for say the elderly that goes back and forth?? Is there anything whatsoever that goes to and from the city??Maybe even,

if you were to ask, the clinic in KC might be willing to work with your Gastro that is closer, for you AND DON to be able to do a Clinical Trial!!Yes, I was so very fortunate that I had many people in my life that would make that kind of 12 hr. trip with me. By particularly the last few trips, I felt that I could do them on my own and it was just my mother that wouldn't let me. You see, after my visit at the end of July, then I was only to be going over there every 3 months. The only reason that I had to go in September and then October as well, is because there had been a shortage of meds and they could only give me enough for two months at the end of July. If the meds had come in in time in Sept. they were actually going to send it to my Pharmacy for me to pick up. But, as it happened. They only got to the main clinic, the morning that I needed them.Have either you or Don investigated further

about travel for a Trial????Gloria Hi Well My GP that I had left a message with about me being in pain and wanted referred to a pain management called

this morning to tell me I had a appt next week with her. She contacted the arthritis doc again and now they contacted me again talking to me about well we tried to get you to do all our meds and you turned them all down. well yeah they are all chemo therapy that will raise my viral loads so much that the hep doc won't be able to keep track of my readings. She did not want me to take the chemo they had. I can't afford to do their chemo and turn around and do the hep chemo. Crap. I can't drive myself to Kansas city. My doc seems to be against me getting anything for pain. I am in pain. The chemo will help maybe slow my arthritis but will it help with my pain??? no not really just slows the arthritis. Next week when I see my GP she will see me after work so hopefully I will be hurting bad by then so she can see how bad the pain is. I won't take any pain meds that night. Getting sick of people playing like they know more about our pain than us. The RA

docs nurse asked doesn't that Trammadol do any good. I said well sometimes. Sometimes the pain is worse sometimes it doesn't hurt as bad. Everyone has good and bad days. I am so mad. They act like I am some kind of drug addict or something if I ask for some help with my pain other than chemo. Why? I just want to work without feeling like crying all the time because it hurts like someone ran me over with a truck.

[Guest guest]

Hi Teri, 2 questions?hospitals are sterile, and the cleanest place you can be?you get get hep C from sharing a straw/bill from snoring coke?ny From: Teri Gottlieb <theresagottlieb@...> Sent: Mon, August 2, 2010 2:18:04 PMSubject: Re: [ ] Fustrated

Beth,You are so right on this one. Yes, more people go into a hospital for something minor and wind up dying from a staph infection that they got from the hospital. It happens all the time. When I was diagnosed, my doc immediately went to my years working in a hospital and the labs I worked with and asked me if I ever stuck myself accidentally with a needle. My response "haven't you?" I can't count the times I got stuck. So they immediately thought that was where it came from. Then came the biopsy and the timing was all off. It was off by 10 years to have gotten it when I was working. But it was right on the money for when I had my son and they hung 5 units of untested blood. 1980. I hate when

they assume this virus comes only from IV drug use. It can come from that, sure. And I don't buy for one minute that Pam got hers by sharing tattoo needle with Tommy Lee.... maybe another needle or a rolled up hundred dollar bill that they used to do lines with. But this virus can be transmitted other ways than by IV drug use and I wish that stigma would go away. I hate it. All we can do is educate people we come in contact with. For now, that's our best defense.Hugs,TeriFrom: Beth Frey <bethfrey42301> Sent: Mon, August 2, 2010 6:23:25 PMSubject: Re: [ ] Fustrated

Responding to the last paragraph about how the docs behave I think it is that stigma thing that you must be a iv drug user and thats why you have hepititisis. So you get what you get. That is how I think they feel, even though they cant really say how we got it or where it came from. Me I think my is from a hospital! Where do you get staff infection? From the hospital! Dont get me on my box I still deal with anger issues from this. But you need your doctors help to work if they want to get paid and you probley need to tell them that.

From: Cinder <datagrey (DOT) com>Subject: [ ] Fustrated Date: Monday, August 2, 2010, 4:15 PM

Hi Well My GP that I had left a message with about me being in pain and wanted referred to a pain management called this morning to tell me I had a appt next week with her. She contacted the arthritis doc again and now they contacted me again talking to me about well we tried to get you to do all our meds and you turned them all down. well yeah they are all chemo therapy that will raise my viral loads so much that the hep doc won't be able to keep track of my readings. She did not want me to take the chemo they had. I can't afford to do their chemo and turn around and do the hep chemo. Crap. I can't drive myself to Kansas city. My doc seems to be against me getting anything for pain. I am in pain. The chemo will help maybe slow my arthritis but will it help with my pain??? no not really just slows the arthritis. Next week when I see my GP she will see me after work so hopefully I will be hurting bad by then so she can see how bad the pain is. I

won't take any pain meds that night. Getting sick of people playing like they know more about our pain than us. The RA docs nurse asked doesn't that Trammadol do any good. I said well sometimes. Sometimes the pain is worse sometimes it doesn't hurt as bad. Everyone has good and bad days. I am so mad. They act like I am some kind of drug addict or something if I ask for some help with my pain other than chemo. Why? I just want to work without feeling like crying all the time because it hurts like someone ran me over with a truck.

[Guest guest]

,2 answers.No andYesHospitals are supposed to be sterile, but they in fact are not. It would be impossible to sterilize a hospital completely. Take the Emergency Room as an example. You go in there to be treated. The ER is busy. The linens on the bed have been changed since the last person was in there. Who knows what kind of trauma that room had just seen before you. Blood has been cleaned up and the room tidied but, housekeeping does not come in between patients. It doesn't happen. There is no time. So the counters in there are a mess microscopically. They might look clean to you but

they probably haven't been wiped down since the day before. If then. The main bacterial culprit in a hospital is staphylococcus. Big word, nasty bacteria. But it's everywhere. It's on your hands right now unless you just washed them. Staph as it's called is not dangerous to the average person, but if you are sick, it's a killer. If your immune defenses are down, it can grab hold easily. Case in point. My ex husband, back when he was still my husband, was in a hospital after having a heart attack. They did a heart cath on him or an angiogram, same thing. They go in thru an artery in the groin and feed a camera into the heart. As it happens, either the camera or the line they used had staph on it. He wound up in more serious trouble from the staph infection than he was already in with the heart condition. He wound up with what looked like a banana on the top of his thigh.

It was a staph infection and it was now circulating thru his bloodstream. This was back in the days when I worked for a lab. The doctor was stumped as to what the bacteria was because they couldn't isolate it. I had to tell them how to find it so they would know how to treat it. The doc listened and did what I said and they were able to isolate the bacteria. Staph. His stay was extended by almost a week due to the infection. He's pretty strong so he was able to fight it. Older people who are sick already, people with AIDS, cancer patients, anyone with a compromised immune system can catch a staph infection at a hospital. It happens more than you realize. As for the straw thing. Think about this a minute. Have you ever seen somebody snort coke and then get a nosebleed? It happens when people do a lot of it. Now, one person uses a

bill to snort the coke, passes the bill to the next person who had just had a nosebleed on the last line... that person uses the bill and passes it to the next. The blood is on the bill and the coke is passing right over it. If the person with the nosebleed has Hep C, guess what? They may have just infected the next person. It happens.There is your lesson for today kiddies! From your teacher the Lab Tech!Hugs,TeriFrom: Barrett <barrjohnm@...> Sent: Tue, August 3, 2010 1:38:02 AMSubject: Re: [ ] Fustrated

Hi Teri, 2 questions?hospitals are sterile, and the cleanest place you can be?you get get hep C from sharing a straw/bill from snoring coke?ny From: Teri Gottlieb <theresagottlieb> Sent: Mon, August 2, 2010 2:18:04 PMSubject: Re: [ ] Fustrated

Beth,You are so right on this one. Yes, more people go into a hospital for something minor and wind up dying from a staph infection that they got from the hospital. It happens all the time. When I was diagnosed, my doc immediately went to my years working in a hospital and the labs I worked with and asked me if I ever stuck myself accidentally with a needle. My response "haven't you?" I can't count the times I got stuck. So they immediately thought that was where it came from. Then came the biopsy and the timing was all off. It was off by 10 years to have gotten it when I was working. But it was right on the money for when I had my son and they hung 5 units of untested blood. 1980. I hate when

they assume this virus comes only from IV drug use. It can come from that, sure. And I don't buy for one minute that Pam got hers by sharing tattoo needle with Tommy Lee.... maybe another needle or a rolled up hundred dollar bill that they used to do lines with. But this virus can be transmitted other ways than by IV drug use and I wish that stigma would go away. I hate it. All we can do is educate people we come in contact with. For now, that's our best defense.Hugs,TeriFrom: Beth Frey <bethfrey42301> Sent: Mon, August 2, 2010 6:23:25 PMSubject: Re: [ ] Fustrated

Responding to the last paragraph about how the docs behave I think it is that stigma thing that you must be a iv drug user and thats why you have hepititisis. So you get what you get. That is how I think they feel, even though they cant really say how we got it or where it came from. Me I think my is from a hospital! Where do you get staff infection? From the hospital! Dont get me on my box I still deal with anger issues from this. But you need your doctors help to work if they want to get paid and you probley need to tell them that.

From: Cinder <datagrey (DOT) com>Subject: [ ] Fustrated Date: Monday, August 2, 2010, 4:15 PM

Hi Well My GP that I had left a message with about me being in pain and wanted referred to a pain management called this morning to tell me I had a appt next week with her. She contacted the arthritis doc again and now they contacted me again talking to me about well we tried to get you to do all our meds and you turned them all down. well yeah they are all chemo therapy that will raise my viral loads so much that the hep doc won't be able to keep track of my readings. She did not want me to take the chemo they had. I can't afford to do their chemo and turn around and do the hep chemo. Crap. I can't drive myself to Kansas city. My doc seems to be against me getting anything for pain. I am in pain. The chemo will help maybe slow my arthritis but will it help with my pain??? no not really just slows the arthritis. Next week when I see my GP she will see me after work so hopefully I will be hurting bad by then so she can see how bad the pain is. I

won't take any pain meds that night. Getting sick of people playing like they know more about our pain than us. The RA docs nurse asked doesn't that Trammadol do any good. I said well sometimes. Sometimes the pain is worse sometimes it doesn't hurt as bad. Everyone has good and bad days. I am so mad. They act like I am some kind of drug addict or something if I ask for some help with my pain other than chemo. Why? I just want to work without feeling like crying all the time because it hurts like someone ran me over with a truck.

[Guest guest]

Hi Teri,thanks. I guess never working in a hospital, I thought they were much cleaner. I guess the ER does not have time between people to clean everything. That is a horrible story about your ex getting a staph infection for being in the hospital for his heart, and the doc could not find the bacteria.yikes, I lived that story for years with the straw. maybe that is how I got Hep C, but I really have no idea how I did, there are lots of maybes, but I am just treating now, so it does not matter how it came in me, just it is important how I get it out of me.thanks,Hugs, ny From: Teri Gottlieb <theresagottlieb@...> Sent: Mon, August 2, 2010 9:43:26 PMSubject: Re: [ ] Fustrated

,2 answers.No andYesHospitals are supposed to be sterile, but they in fact are not. It would be impossible to sterilize a hospital completely. Take the Emergency Room as an example. You go in there to be treated. The ER is busy. The linens on the bed have been changed since the last person was in there. Who knows what kind of trauma that room had just seen before you. Blood has been cleaned up and the room tidied but, housekeeping does not come in between patients. It doesn't happen. There is no time. So the counters in there are a mess microscopically. They might look clean to you but

they probably haven't been wiped down since the day before. If then. The main bacterial culprit in a hospital is staphylococcus. Big word, nasty bacteria. But it's everywhere. It's on your hands right now unless you just washed them. Staph as it's called is not dangerous to the average person, but if you are sick, it's a killer. If your immune defenses are down, it can grab hold easily. Case in point. My ex husband, back when he was still my husband, was in a hospital after having a heart attack. They did a heart cath on him or an angiogram, same thing. They go in thru an artery in the groin and feed a camera into the heart. As it happens, either the camera or the line they used had staph on it. He wound up in more serious trouble from the staph infection than he was already in with the heart condition. He wound up with what looked like a banana on the top of his thigh.

It was a staph infection and it was now circulating thru his bloodstream. This was back in the days when I worked for a lab. The doctor was stumped as to what the bacteria was because they couldn't isolate it. I had to tell them how to find it so they would know how to treat it. The doc listened and did what I said and they were able to isolate the bacteria. Staph. His stay was extended by almost a week due to the infection. He's pretty strong so he was able to fight it. Older people who are sick already, people with AIDS, cancer patients, anyone with a compromised immune system can catch a staph infection at a hospital. It happens more than you realize. As for the straw thing. Think about this a minute. Have you ever seen somebody snort coke and then get a nosebleed? It happens when people do a lot of it. Now, one person uses a

bill to snort the coke, passes the bill to the next person who had just had a nosebleed on the last line... that person uses the bill and passes it to the next. The blood is on the bill and the coke is passing right over it. If the person with the nosebleed has Hep C, guess what? They may have just infected the next person. It happens.There is your lesson for today kiddies! From your teacher the Lab Tech!Hugs,TeriFrom: Barrett <barrjohnm (DOT) com> Sent: Tue, August 3, 2010 1:38:02 AMSubject: Re: [ ] Fustrated

Hi Teri, 2 questions?hospitals are sterile, and the cleanest place you can be?you get get hep C from sharing a straw/bill from snoring coke?ny From: Teri Gottlieb <theresagottlieb> Sent: Mon, August 2, 2010 2:18:04

PMSubject: Re: [ ] Fustrated

Beth,You are so right on this one. Yes, more people go into a hospital for something minor and wind up dying from a staph infection that they got from the hospital. It happens all the time. When I was diagnosed, my doc immediately went to my years working in a hospital and the labs I worked with and asked me if I ever stuck myself accidentally with a needle. My response "haven't you?" I can't count the times I got stuck. So they immediately thought that was where it came from. Then came the biopsy and the timing was all off. It was off by 10 years to have gotten it when I was working. But it was right on the money for when I had my son and they hung 5 units of untested blood. 1980. I hate when

they assume this virus comes only from IV drug use. It can come from that, sure. And I don't buy for one minute that Pam got hers by sharing tattoo needle with Tommy Lee.... maybe another needle or a rolled up hundred dollar bill that they used to do lines with. But this virus can be transmitted other ways than by IV drug use and I wish that stigma would go away. I hate it. All we can do is educate people we come in contact with. For now, that's our best defense.Hugs,TeriFrom: Beth Frey <bethfrey42301> Sent: Mon, August 2, 2010 6:23:25 PMSubject: Re: [ ] Fustrated

Responding to the last paragraph about how the docs behave I think it is that stigma thing that you must be a iv drug user and thats why you have hepititisis. So you get what you get. That is how I think they feel, even though they cant really say how we got it or where it came from. Me I think my is from a hospital! Where do you get staff infection? From the hospital! Dont get me on my box I still deal with anger issues from this. But you need your doctors help to work if they want to get paid and you probley need to tell them that.

From: Cinder <datagrey (DOT) com>Subject: [ ] Fustrated Date: Monday, August 2, 2010, 4:15 PM

Hi Well My GP that I had left a message with about me being in pain and wanted referred to a pain management called this morning to tell me I had a appt next week with her. She contacted the arthritis doc again and now they contacted me again talking to me about well we tried to get you to do all our meds and you turned them all down. well yeah they are all chemo therapy that will raise my viral loads so much that the hep doc won't be able to keep track of my readings. She did not want me to take the chemo they had. I can't afford to do their chemo and turn around and do the hep chemo. Crap. I can't drive myself to Kansas city. My doc seems to be against me getting anything for pain. I am in pain. The chemo will help maybe slow my arthritis but will it help with my pain??? no not really just slows the arthritis. Next week when I see my GP she will see me after work so hopefully I will be hurting bad by then so she can see how bad the pain is. I

won't take any pain meds that night. Getting sick of people playing like they know more about our pain than us. The RA docs nurse asked doesn't that Trammadol do any good. I said well sometimes. Sometimes the pain is worse sometimes it doesn't hurt as bad. Everyone has good and bad days. I am so mad. They act like I am some kind of drug addict or something if I ask for some help with my pain other than chemo. Why? I just want to work without feeling like crying all the time because it hurts like someone ran me over with a truck.

[Guest guest]

The ones from the RA clinic that the Arthritis doc wants to treat me with were a form of chemotherapy. There are other meds he was going to try on me that were not also but were still going to mess with my viral load readings and the hep doc told me she would rather not have me on them. The doc himself said they were chemo. They do treat Rhuematoid arthritis with a chemotherapy now.He did try a sulfer drug along with another I can't remember the name on and I was seeing double with it. I quite taking it. The RA doc was mainly to try and slow down my arthritis. Now my GP is sending me to a Pain Management clinic. They should be calling today or tomorrow to set up the appt. The misunderstanding I had was I thought the RA doc would handle the pain of the arthritis too. He only handles working on keeping it from going further mainly. He does not do

a whole lot of pain relief.

There is not transport to Kansas City. I don't hang around with anybody at all. I have no one else to take me anywhere. I have put off tx for an indefinite time for now anyway. I had to due to the stress. We are cleaning and packing a house and going through the dying of Ricks father right now. I am working 50-60 hours a week. I can't do anything else right now. I have a full plate right now. I asked my hep doc before deciding to put chemo on hold if it would be okay. She said I could even as long as a couple of years as long as we kept up on good labs. A trip to Kansas City and back very often would be hard as heck for Don I am afraid. I also don't know if he could honestly do TX without pain meds for a pure study. He is in a lot of pain already. I am in quite a bit of pain myself but seeing Don makes me feel guilty for even saying I have pain. But I don't want to do Tx without pain meds to help more. They want you to come to KC way too

often and I could not afford that gas even if I could go. After getting rid of this house and moving me to the base we will be able to afford tx much better. I am putting money away already so I can pay for it right out on the copays. I will be prepared. I know now more what to expect.

From: Gloria <gadamscan@...>Subject: Re: [ ] Fustrated Date: Monday, August 2, 2010, 7:38 PM

Why do you think that all these "pain" meds are some form of chemo?? I'm just not understanding that at all. My brother literally has to take morhpine etc. for his pain from "myofacial" pain syndrome. From everything that I can understand - this is an even more debilitating pain than the Fibromyalgia. However, he will begin treatment in September for his Genotype 3 HepC. Quite simply, they can not take away his pain pills, period. The other thing that I really wanted to ask you earlier was - do you not know anyone that could take you back and forth to Kansas City for treatment?? Is there anything like a bus or van for say the elderly that goes back and forth?? Is there anything whatsoever that goes to and from the city??Maybe even, if you were to ask, the clinic in KC might be willing to work with your Gastro that is

closer, for you AND DON to be able to do a Clinical Trial!!Yes, I was so very fortunate that I had many people in my life that would make that kind of 12 hr. trip with me. By particularly the last few trips, I felt that I could do them on my own and it was just my mother that wouldn't let me. You see, after my visit at the end of July, then I was only to be going over there every 3 months. The only reason that I had to go in September and then October as well, is because there had been a shortage of meds and they could only give me enough for two months at the end of July. If the meds had come in in time in Sept. they were actually going to send it to my Pharmacy for me to pick up. But, as it happened. They only got to the main clinic, the morning that I needed them.Have either you or Don investigated further about travel for a Trial????Gloria

[Guest guest]

I just didn't know that anything with chemo in it was being prescribed for that awful form of arthritis. By gawd , it's a wonder that you can even hold down a job and especially doing what you do.I just wanted to understand and also suggest, if a person is already on medications for other problems, then whatever affects it might have on the liver is already being read in the labs. I know the most important part in my Clinical Trial, was that I made them aware of any changes to the list of scripts I was already taking.Gloria

The ones from the RA clinic that the Arthritis doc wants to treat me with were a form of chemotherapy. There are other meds he was going to try on me that were not also but were still going to mess with my viral load readings and the hep doc told me she would rather not have me on them. The doc himself said they were chemo. They do treat Rhuematoid arthritis with a chemotherapy now.He did try a sulfer drug along with another I can't remember the name on and I was seeing double with it. I quite taking it. The RA doc was mainly to try and slow down my arthritis. Now my GP is sending me to a Pain Management

clinic. They should be calling today or tomorrow to set up the appt. The misunderstanding I had was I thought the RA doc would handle the pain of the arthritis too. He only handles working on keeping it from going further mainly. He does not do

a whole lot of pain relief.

There is not transport to Kansas City. I don't hang around with anybody at all. I have no one else to take me anywhere. I have put off tx for an indefinite time for now anyway. I had to due to the stress. We are cleaning and packing a house and going through the dying of Ricks father right now. I am working 50-60 hours a week. I can't do anything else right now. I have a full plate right now. I asked my hep doc before deciding to put chemo on hold if it would be okay. She said I could even as long as a couple of years as long as we kept up on good labs. A trip to Kansas City and back very often would be hard as heck for Don I am afraid. I also don't know if he could honestly do TX without pain meds for a pure study. He is in a lot of pain already. I am in quite a bit of pain myself but seeing Don makes me feel guilty for even saying I have pain. But I don't want to do

Tx without pain meds to help more. They want you to come to KC way too

often and I could not afford that gas even if I could go. After getting rid of this house and moving me to the base we will be able to afford tx much better. I am putting money away already so I can pay for it right out on the copays. I will be prepared. I know now more what to expect.

From: Gloria <gadamscan (DOT) ca>Subject: Re: [ ] Fustrated Date: Monday, August 2, 2010, 7:38 PM

Why do you think that all these "pain" meds are some form of chemo?? I'm just not understanding that at all. My brother literally has to take morhpine etc. for his pain from "myofacial" pain syndrome. From everything that I can understand - this is an even more debilitating pain than the Fibromyalgia. However, he will begin treatment in September for his Genotype 3 HepC. Quite simply, they can not take away his pain pills, period. The other thing that I really wanted to ask you earlier was - do you not know anyone that could take you back and forth to Kansas City for treatment?? Is there anything like a bus or van for say the elderly that goes back and forth?? Is there anything whatsoever that goes to and from the city??Maybe even, if you were to ask, the clinic in KC might be willing to work with your Gastro that is

closer, for you AND DON to be able to do a Clinical Trial!!Yes, I was so very fortunate that I had many people in my life that would make that kind of 12 hr. trip with me. By particularly the last few trips, I felt that I could do them on my own and it was just my mother that wouldn't let me. You see, after my visit at the end of July, then I was only to be going over there every 3 months. The only reason that I had to go in September and then October as well, is because there had been a shortage of meds and they could only give me enough for two months at the end of July. If the meds had come in in time in Sept. they were actually going to send it to my Pharmacy for me to pick up. But, as it happened. They only got to the main clinic, the morning that I needed them.Have either you or Don investigated further about travel for a Trial????Gloria

[Guest guest]

Yep. I do make them aware but it seems each doc thinks their area of expertise is more important to my health than any of the others. I just have gotten where I tell them yea or nea as to what I feel comes next and what I see as harmful or helpful. I will not let the RA doc give me chemo for Arthritis. I can't do that on top of all the other stuff I am going to be doing.

I am so worn out. I hurt all the time.

I am going to a pain management clinic. They gave me an appt but expect me to get off work and stay up till 9 45 am after working 13 hours at night and see them for however long and then I got to work that night too. I am going to have to rescedule. I will have to do that or call in to work. We don't really have anyone to fill in at work right now so they better change my appt. I have a appt at 845 this week on Wed after work with my GP. She is probably going to be mad at me because I called and insisted she get me an appt with a pain management place not the RA guy. I will have to explain to her I thought not only did I think they would help figure a way to help get a way to try and keep the RA from getting worse they would help with the pain of it. They didn't want to give me anything different than I already had. Well what I have works yeah. Most the time. Once in a while I have times that it is not enough and I just sit and bawl because it hurts

so bad I can't stand it. I guess I should have gone to the ER for help but why. What would they do for me.? nothing.

I don't abuse the drugs either. I take the tramadol one every six hours. I was told to over lap them though to avoid ever letting the pain get worse. Sometimes it is't enough. When I packed those books that one day. I hurt the whole next day horrible. I never know when I will hurt that bad. I never know how often. Sometimes I get home and I can't hardly get out of my car. Or in bed I can't turn over but if I stay laying like I am I hurt too bad. I slowly but very painfully turn myself over crying the whole time. Then I get up at four and get dressed and ready for work and go another night. I work a little sit a little work sit work sit. The pain is also exhausting. Well better go for now. Kind of got off subject I guess. Cinder

jessicay18@...

From: Gloria <gadamscan (DOT) ca>Subject: Re: [ ] Fustrated Date: Monday, August 2, 2010, 7:38 PM

Why do you think that all these "pain" meds are some form of chemo?? I'm just not understanding that at all. My brother literally has to take morhpine etc. for his pain from "myofacial" pain syndrome. From everything that I can understand - this is an even more debilitating pain than the Fibromyalgia. However, he will begin treatment in September for his Genotype 3 HepC. Quite simply, they can not take away his pain pills, period. The other thing that I really wanted to ask you earlier was - do you not know anyone that could take you back and forth to Kansas City for treatment?? Is there anything like a bus or van for say the elderly that goes back and forth?? Is there anything whatsoever that goes to and from the city??Maybe even, if you were to ask, the clinic in KC might be willing to work with your Gastro that is

closer, for you AND DON to be able to do a Clinical Trial!!Yes, I was so very fortunate that I had many people in my life that would make that kind of 12 hr. trip with me. By particularly the last few trips, I felt that I could do them on my own and it was just my mother that wouldn't let me. You see, after my visit at the end of July, then I was only to be going over there every 3 months. The only reason that I had to go in September and then October as well, is because there had been a shortage of meds and they could only give me enough for two months at the end of July. If the meds had come in in time in Sept. they were actually going to send it to my Pharmacy for me to pick up. But, as it happened. They only got to the main clinic, the morning that I needed them.Have either you or Don investigated further about travel for a Trial????Gloria