got some more bad news today

MiddleAgedLady · Nov 7, 2009

The IV antibiotics wipe me out every time. It takes me two weeks afterward to get back to normal energy levels. I thought it was just me! And I find everything looks worse when I'm tired. Melissa, I'm encouraged by what you said about the Bactrim. I just started on it. Josh, keep writing to us. Thinking good thoughts for you.
Joan

MiddleAgedLady · Nov 7, 2009

The IV antibiotics wipe me out every time. It takes me two weeks afterward to get back to normal energy levels. I thought it was just me! And I find everything looks worse when I'm tired. Melissa, I'm encouraged by what you said about the Bactrim. I just started on it. Josh, keep writing to us. Thinking good thoughts for you.
Joan

MiddleAgedLady · Nov 7, 2009

The IV antibiotics wipe me out every time. It takes me two weeks afterward to get back to normal energy levels. I thought it was just me! And I find everything looks worse when I'm tired. Melissa, I'm encouraged by what you said about the Bactrim. I just started on it. Josh, keep writing to us. Thinking good thoughts for you.
Joan

MiddleAgedLady · Nov 7, 2009

The IV antibiotics wipe me out every time. It takes me two weeks afterward to get back to normal energy levels. I thought it was just me! And I find everything looks worse when I'm tired. Melissa, I'm encouraged by what you said about the Bactrim. I just started on it. Josh, keep writing to us. Thinking good thoughts for you.
Joan

MiddleAgedLady · Nov 7, 2009

The IV antibiotics wipe me out every time. It takes me two weeks afterward to get back to normal energy levels. I thought it was just me! And I find everything looks worse when I'm tired. Melissa, I'm encouraged by what you said about the Bactrim. I just started on it. Josh, keep writing to us. Thinking good thoughts for you.
 Joan

melx · Nov 7, 2009

Hey Josh
I love that everyone is recommending music. Yes Yes music. Make sure it's something that you like. Preference really it the key. Also if you are trying to keep motivated the tempo should be upbeat, something above 60 beats per minute. And, if you need to relax 60 beats or less per minute. Also if you just do some gentle stretching there at bedside a couple minutes a few times a day. Maybe Physical therapy can get involved and maybe they can incorporate music into your PT. Music motivates and relaxes. And what Melissa said about singing .... do it.... don't worry about what you sound like. Just do it! The other great thing about music - if you are using earbuds or earphones - it masks the obnoxious sounds of the hospital environment (beeps, buzzes, loud conversation.) THose noises can be so stress producing.
Rest up and get that strength back.

melx · Nov 7, 2009

Hey Josh
I love that everyone is recommending music. Yes Yes music. Make sure it's something that you like. Preference really it the key. Also if you are trying to keep motivated the tempo should be upbeat, something above 60 beats per minute. And, if you need to relax 60 beats or less per minute. Also if you just do some gentle stretching there at bedside a couple minutes a few times a day. Maybe Physical therapy can get involved and maybe they can incorporate music into your PT. Music motivates and relaxes. And what Melissa said about singing .... do it.... don't worry about what you sound like. Just do it! The other great thing about music - if you are using earbuds or earphones - it masks the obnoxious sounds of the hospital environment (beeps, buzzes, loud conversation.) THose noises can be so stress producing.
Rest up and get that strength back.

melx · Nov 7, 2009

Hey Josh
I love that everyone is recommending music. Yes Yes music. Make sure it's something that you like. Preference really it the key. Also if you are trying to keep motivated the tempo should be upbeat, something above 60 beats per minute. And, if you need to relax 60 beats or less per minute. Also if you just do some gentle stretching there at bedside a couple minutes a few times a day. Maybe Physical therapy can get involved and maybe they can incorporate music into your PT. Music motivates and relaxes. And what Melissa said about singing .... do it.... don't worry about what you sound like. Just do it! The other great thing about music - if you are using earbuds or earphones - it masks the obnoxious sounds of the hospital environment (beeps, buzzes, loud conversation.) THose noises can be so stress producing.
Rest up and get that strength back.

melx · Nov 7, 2009

Hey Josh
I love that everyone is recommending music. Yes Yes music. Make sure it's something that you like. Preference really it the key. Also if you are trying to keep motivated the tempo should be upbeat, something above 60 beats per minute. And, if you need to relax 60 beats or less per minute. Also if you just do some gentle stretching there at bedside a couple minutes a few times a day. Maybe Physical therapy can get involved and maybe they can incorporate music into your PT. Music motivates and relaxes. And what Melissa said about singing .... do it.... don't worry about what you sound like. Just do it! The other great thing about music - if you are using earbuds or earphones - it masks the obnoxious sounds of the hospital environment (beeps, buzzes, loud conversation.) THose noises can be so stress producing.
Rest up and get that strength back.

melx · Nov 7, 2009

Hey Josh
 I love that everyone is recommending music. Yes Yes music. Make sure it's something that you like. Preference really it the key. Also if you are trying to keep motivated the tempo should be upbeat, something above 60 beats per minute. And, if you need to relax 60 beats or less per minute. Also if you just do some gentle stretching there at bedside a couple minutes a few times a day. Maybe Physical therapy can get involved and maybe they can incorporate music into your PT. Music motivates and relaxes. And what Melissa said about singing .... do it.... don't worry about what you sound like. Just do it! The other great thing about music - if you are using earbuds or earphones - it masks the obnoxious sounds of the hospital environment (beeps, buzzes, loud conversation.) THose noises can be so stress producing.
 Rest up and get that strength back.

Jbenjamin152 · Nov 10, 2009

HEY EVERYONE...
I finally made it back to the computers It has been a few days....the team changed doctors today and everything was going great till this afternoon, when the doctor came in asked me how I was...I told him I'm weak, and hurting(I also have Kyphosis of the spine...t 9,10,11 are all F*CK*D up...) so he said "I understand we will get physical therapy up here for you" I am on a P.C.A. for the pain...they give me fentanyl and when he left the room he, without telling me, put an order in for the pca to be taken away!!!!! and then I would recieve 1/10th of the medcine I was getting an hour, a day...So with out need to say I wasn't mad I was FURIOUS!!! I demanded to see him face to face....so what did he do he sent a lacky down...I chewed him up spit him out and DEMANDED again, claming" I know my f*cking patient rights!" and the lacky turned as white as his second year coat. He then went upstairs and sent down a second lacky...one year below him. I'm not sure if he wanted him to figure out how to deal with a pissed off person in pain. I chewed his a@@ out and he ran to the boss and said "u better go see him before he leaves becaue he said if u don't he will come find you...he doesn't care if he has to search ALL of the 12 floor hospital." Finally before he came down my nurse, who had been trying to get him on the phone finally got him on the phone and he put in an order for pain meds..., he came to my door...4 hours after I had recieved the last pain dose and he said and I quote "Is there a Problem here"...I almost got out of bed and beat him with my I.V. pole...but I was Way too weak and in to damn much pain. I said yes...lets resolve it, and we did. I had 4 hours to cool off, and lie there in sweat and from no meds...next at 8 hours would have been the shakes and pukes...I know. I still am very weak the good news is I am feeling a little...yes a little bit better...maybe monday I can go home...definatly not friday...we will see how the healing process goes...they have raised my vancomyocin levels 6 times...if it doesn't start working it's another failure and I get 2 more weeks of weakness...pray for me and pray for my wife...I miss u baby. Stay strong...ur my anchor, without u This would be beyond hard...everyone on here that responds and even reads THANKS
Joshua Benjamin

Jbenjamin152 · Nov 10, 2009

HEY EVERYONE...
I finally made it back to the computers It has been a few days....the team changed doctors today and everything was going great till this afternoon, when the doctor came in asked me how I was...I told him I'm weak, and hurting(I also have Kyphosis of the spine...t 9,10,11 are all F*CK*D up...) so he said "I understand we will get physical therapy up here for you" I am on a P.C.A. for the pain...they give me fentanyl and when he left the room he, without telling me, put an order in for the pca to be taken away!!!!! and then I would recieve 1/10th of the medcine I was getting an hour, a day...So with out need to say I wasn't mad I was FURIOUS!!! I demanded to see him face to face....so what did he do he sent a lacky down...I chewed him up spit him out and DEMANDED again, claming" I know my f*cking patient rights!" and the lacky turned as white as his second year coat. He then went upstairs and sent down a second lacky...one year below him. I'm not sure if he wanted him to figure out how to deal with a pissed off person in pain. I chewed his a@@ out and he ran to the boss and said "u better go see him before he leaves becaue he said if u don't he will come find you...he doesn't care if he has to search ALL of the 12 floor hospital." Finally before he came down my nurse, who had been trying to get him on the phone finally got him on the phone and he put in an order for pain meds..., he came to my door...4 hours after I had recieved the last pain dose and he said and I quote "Is there a Problem here"...I almost got out of bed and beat him with my I.V. pole...but I was Way too weak and in to damn much pain. I said yes...lets resolve it, and we did. I had 4 hours to cool off, and lie there in sweat and from no meds...next at 8 hours would have been the shakes and pukes...I know. I still am very weak the good news is I am feeling a little...yes a little bit better...maybe monday I can go home...definatly not friday...we will see how the healing process goes...they have raised my vancomyocin levels 6 times...if it doesn't start working it's another failure and I get 2 more weeks of weakness...pray for me and pray for my wife...I miss u baby. Stay strong...ur my anchor, without u This would be beyond hard...everyone on here that responds and even reads THANKS
Joshua Benjamin

Jbenjamin152 · Nov 10, 2009

HEY EVERYONE...
I finally made it back to the computers It has been a few days....the team changed doctors today and everything was going great till this afternoon, when the doctor came in asked me how I was...I told him I'm weak, and hurting(I also have Kyphosis of the spine...t 9,10,11 are all F*CK*D up...) so he said "I understand we will get physical therapy up here for you" I am on a P.C.A. for the pain...they give me fentanyl and when he left the room he, without telling me, put an order in for the pca to be taken away!!!!! and then I would recieve 1/10th of the medcine I was getting an hour, a day...So with out need to say I wasn't mad I was FURIOUS!!! I demanded to see him face to face....so what did he do he sent a lacky down...I chewed him up spit him out and DEMANDED again, claming" I know my f*cking patient rights!" and the lacky turned as white as his second year coat. He then went upstairs and sent down a second lacky...one year below him. I'm not sure if he wanted him to figure out how to deal with a pissed off person in pain. I chewed his a@@ out and he ran to the boss and said "u better go see him before he leaves becaue he said if u don't he will come find you...he doesn't care if he has to search ALL of the 12 floor hospital." Finally before he came down my nurse, who had been trying to get him on the phone finally got him on the phone and he put in an order for pain meds..., he came to my door...4 hours after I had recieved the last pain dose and he said and I quote "Is there a Problem here"...I almost got out of bed and beat him with my I.V. pole...but I was Way too weak and in to damn much pain. I said yes...lets resolve it, and we did. I had 4 hours to cool off, and lie there in sweat and from no meds...next at 8 hours would have been the shakes and pukes...I know. I still am very weak the good news is I am feeling a little...yes a little bit better...maybe monday I can go home...definatly not friday...we will see how the healing process goes...they have raised my vancomyocin levels 6 times...if it doesn't start working it's another failure and I get 2 more weeks of weakness...pray for me and pray for my wife...I miss u baby. Stay strong...ur my anchor, without u This would be beyond hard...everyone on here that responds and even reads THANKS
Joshua Benjamin

Jbenjamin152 · Nov 10, 2009

HEY EVERYONE...
I finally made it back to the computers It has been a few days....the team changed doctors today and everything was going great till this afternoon, when the doctor came in asked me how I was...I told him I'm weak, and hurting(I also have Kyphosis of the spine...t 9,10,11 are all F*CK*D up...) so he said "I understand we will get physical therapy up here for you" I am on a P.C.A. for the pain...they give me fentanyl and when he left the room he, without telling me, put an order in for the pca to be taken away!!!!! and then I would recieve 1/10th of the medcine I was getting an hour, a day...So with out need to say I wasn't mad I was FURIOUS!!! I demanded to see him face to face....so what did he do he sent a lacky down...I chewed him up spit him out and DEMANDED again, claming" I know my f*cking patient rights!" and the lacky turned as white as his second year coat. He then went upstairs and sent down a second lacky...one year below him. I'm not sure if he wanted him to figure out how to deal with a pissed off person in pain. I chewed his a@@ out and he ran to the boss and said "u better go see him before he leaves becaue he said if u don't he will come find you...he doesn't care if he has to search ALL of the 12 floor hospital." Finally before he came down my nurse, who had been trying to get him on the phone finally got him on the phone and he put in an order for pain meds..., he came to my door...4 hours after I had recieved the last pain dose and he said and I quote "Is there a Problem here"...I almost got out of bed and beat him with my I.V. pole...but I was Way too weak and in to damn much pain. I said yes...lets resolve it, and we did. I had 4 hours to cool off, and lie there in sweat and from no meds...next at 8 hours would have been the shakes and pukes...I know. I still am very weak the good news is I am feeling a little...yes a little bit better...maybe monday I can go home...definatly not friday...we will see how the healing process goes...they have raised my vancomyocin levels 6 times...if it doesn't start working it's another failure and I get 2 more weeks of weakness...pray for me and pray for my wife...I miss u baby. Stay strong...ur my anchor, without u This would be beyond hard...everyone on here that responds and even reads THANKS
Joshua Benjamin

Jbenjamin152 · Nov 10, 2009

HEY EVERYONE...
 I finally made it back to the computers It has been a few days....the team changed doctors today and everything was going great till this afternoon, when the doctor came in asked me how I was...I told him I'm weak, and hurting(I also have Kyphosis of the spine...t 9,10,11 are all F*CK*D up...) so he said "I understand we will get physical therapy up here for you" I am on a P.C.A. for the pain...they give me fentanyl and when he left the room he, without telling me, put an order in for the pca to be taken away!!!!! and then I would recieve 1/10th of the medcine I was getting an hour, a day...So with out need to say I wasn't mad I was FURIOUS!!! I demanded to see him face to face....so what did he do he sent a lacky down...I chewed him up spit him out and DEMANDED again, claming" I know my f*cking patient rights!" and the lacky turned as white as his second year coat. He then went upstairs and sent down a second lacky...one year below him. I'm not sure if he wanted him to figure out how to deal with a pissed off person in pain. I chewed his a@@ out and he ran to the boss and said "u better go see him before he leaves becaue he said if u don't he will come find you...he doesn't care if he has to search ALL of the 12 floor hospital." Finally before he came down my nurse, who had been trying to get him on the phone finally got him on the phone and he put in an order for pain meds..., he came to my door...4 hours after I had recieved the last pain dose and he said and I quote "Is there a Problem here"...I almost got out of bed and beat him with my I.V. pole...but I was Way too weak and in to damn much pain. I said yes...lets resolve it, and we did. I had 4 hours to cool off, and lie there in sweat and from no meds...next at 8 hours would have been the shakes and pukes...I know. I still am very weak the good news is I am feeling a little...yes a little bit better...maybe monday I can go home...definatly not friday...we will see how the healing process goes...they have raised my vancomyocin levels 6 times...if it doesn't start working it's another failure and I get 2 more weeks of weakness...pray for me and pray for my wife...I miss u baby. Stay strong...ur my anchor, without u This would be beyond hard...everyone on here that responds and even reads THANKS
 Joshua Benjamin

ladybug · Nov 10, 2009

Josh,

I'm so sorry you're going through all of this! Just know you're in my thoughts and prayers that they can find the right dose of med and you can start to HEAL. I can't imagine how difficult it would be to be in so much pain and so sick with infection! Urgh. Honestly, if someone wants to wean you off pain meds, during a hospital stay where you are very very sick and struggling is NOT the time! Shame on them!

I'm sure you've already thought about this, but maybe once you start feeling better, talk to the patient rep and/or write a letter to hospital administration. I've done this before when unhappy with disrespectful staff. I have to be honest, it didn't change anything, but it did make me feel better and hopefully it kept the certain people responsible from doing it again.

Anyway, all my best to you and your wife and family.

I second the idea to listen to music... I find even at home, I can loose myself in whatever I'm doing when I have music on. I also suggest any sort of activity you can muster. I find I feel MUCH worse when on IVs if I just lay in a hospital bed (that's why I usually demand home IVs). I even spike fevers that won't come down when I lay around, whereas, if I keep moving (even just to walk around my room - I know not really logical for you right now) I feel better. The more I lay around, the worse I feel. Anyway, just my two cents.

((hugs))

ladybug · Nov 10, 2009

Josh,

I'm so sorry you're going through all of this! Just know you're in my thoughts and prayers that they can find the right dose of med and you can start to HEAL. I can't imagine how difficult it would be to be in so much pain and so sick with infection! Urgh. Honestly, if someone wants to wean you off pain meds, during a hospital stay where you are very very sick and struggling is NOT the time! Shame on them!

I'm sure you've already thought about this, but maybe once you start feeling better, talk to the patient rep and/or write a letter to hospital administration. I've done this before when unhappy with disrespectful staff. I have to be honest, it didn't change anything, but it did make me feel better and hopefully it kept the certain people responsible from doing it again.

Anyway, all my best to you and your wife and family.

I second the idea to listen to music... I find even at home, I can loose myself in whatever I'm doing when I have music on. I also suggest any sort of activity you can muster. I find I feel MUCH worse when on IVs if I just lay in a hospital bed (that's why I usually demand home IVs). I even spike fevers that won't come down when I lay around, whereas, if I keep moving (even just to walk around my room - I know not really logical for you right now) I feel better. The more I lay around, the worse I feel. Anyway, just my two cents.

((hugs))

ladybug · Nov 10, 2009

Josh,

I'm so sorry you're going through all of this! Just know you're in my thoughts and prayers that they can find the right dose of med and you can start to HEAL. I can't imagine how difficult it would be to be in so much pain and so sick with infection! Urgh. Honestly, if someone wants to wean you off pain meds, during a hospital stay where you are very very sick and struggling is NOT the time! Shame on them!

I'm sure you've already thought about this, but maybe once you start feeling better, talk to the patient rep and/or write a letter to hospital administration. I've done this before when unhappy with disrespectful staff. I have to be honest, it didn't change anything, but it did make me feel better and hopefully it kept the certain people responsible from doing it again.

Anyway, all my best to you and your wife and family.

I second the idea to listen to music... I find even at home, I can loose myself in whatever I'm doing when I have music on. I also suggest any sort of activity you can muster. I find I feel MUCH worse when on IVs if I just lay in a hospital bed (that's why I usually demand home IVs). I even spike fevers that won't come down when I lay around, whereas, if I keep moving (even just to walk around my room - I know not really logical for you right now) I feel better. The more I lay around, the worse I feel. Anyway, just my two cents.

((hugs))

ladybug · Nov 10, 2009

Josh,

I'm so sorry you're going through all of this! Just know you're in my thoughts and prayers that they can find the right dose of med and you can start to HEAL. I can't imagine how difficult it would be to be in so much pain and so sick with infection! Urgh. Honestly, if someone wants to wean you off pain meds, during a hospital stay where you are very very sick and struggling is NOT the time! Shame on them!

I'm sure you've already thought about this, but maybe once you start feeling better, talk to the patient rep and/or write a letter to hospital administration. I've done this before when unhappy with disrespectful staff. I have to be honest, it didn't change anything, but it did make me feel better and hopefully it kept the certain people responsible from doing it again.

Anyway, all my best to you and your wife and family.

I second the idea to listen to music... I find even at home, I can loose myself in whatever I'm doing when I have music on. I also suggest any sort of activity you can muster. I find I feel MUCH worse when on IVs if I just lay in a hospital bed (that's why I usually demand home IVs). I even spike fevers that won't come down when I lay around, whereas, if I keep moving (even just to walk around my room - I know not really logical for you right now) I feel better. The more I lay around, the worse I feel. Anyway, just my two cents.

((hugs))

ladybug · Nov 10, 2009

Josh,
 
 I'm so sorry you're going through all of this! Just know you're in my thoughts and prayers that they can find the right dose of med and you can start to HEAL. I can't imagine how difficult it would be to be in so much pain and so sick with infection! Urgh. Honestly, if someone wants to wean you off pain meds, during a hospital stay where you are very very sick and struggling is NOT the time! Shame on them!
 
 I'm sure you've already thought about this, but maybe once you start feeling better, talk to the patient rep and/or write a letter to hospital administration. I've done this before when unhappy with disrespectful staff. I have to be honest, it didn't change anything, but it did make me feel better and hopefully it kept the certain people responsible from doing it again.
 
 Anyway, all my best to you and your wife and family.
 
 I second the idea to listen to music... I find even at home, I can loose myself in whatever I'm doing when I have music on. I also suggest any sort of activity you can muster. I find I feel MUCH worse when on IVs if I just lay in a hospital bed (that's why I usually demand home IVs). I even spike fevers that won't come down when I lay around, whereas, if I keep moving (even just to walk around my room - I know not really logical for you right now) I feel better. The more I lay around, the worse I feel. Anyway, just my two cents.
 
 ((hugs))

got some more bad news today

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