Re: pain management - ny + Beth

[Guest guest]

Two things came to mind as I was reading Beth's post. First, I got fed up with people not understanding how we feel while doing tx. I guess that since we don't really look sick, they don't get it. But, even as upset as I would get, I still wouldn't have wished another soul to feel how I was feeling. However, my niece said something that I thought was great. She said "No, but wouldn't you love for them to feel like you for 24 hrs?" Now, I liked that one.The other thing - I was talking with one of the Hep C nurses on the phone and we were discussing getting a support group started. I liked what she said about that. As she said, they know all the medical things about the Hep

and even the treatment; but, they honestly can not comprehend how any of us heppers feel.Uugg, I just remembered when I had that conversation with the nurse. It was the 7th of January, 2010. It was that conversation that set my husband off for all of that year until he died. He'd say that he was sick of hearing about Hep C. I'd try to point out to him that it wasn't much different than doing something about our alcoholism. They are both chronic conditions!! But, he just wanted to focus on something so he could take his frustrations out on it. Especially when he wanted to have his way!!Gloriany I know it isnt funny but I had to laugh at the prison comment. I feel you pain, they dont give a flying flip it isnt them that has had to go to hell and back they have no idea. have you ever watched that movie patch adams where the students had to go through some of the same things their paitents did. That is what I wish for them. I say that and I did wish it when I couldnt get my GP to understand what was going on with me. Not that I wanted her ill; just a little empthay and not so much dont forget to pay me. Well any way she is now having to go through chemo herself due to kidney cancer. Not pretty at all. It has attacked her whole body. I didnt wish for her to get sick just wanted her to experince what I was going through.

I agree with Don you dont want to damage your self with taking all that combo of drugs cant be good for you. You know depression can cause you body to have pain as well. You need to rest and give yourself time to heal from tx.

Take a deep breath and go in there, make sure your prepared write down what you are going to say - ask. That way if they get off track you can put them right back on it.

Good luck tomorrow I will be praying for you.

[Guest guest]

I was lucky enough to meet with a group of nurses last week that will be manning a 800 line for hep c.  After I told them my story they had questions...  their first question was " What is treatment really like? "  I quickly dispelled the myth that the medications produced " flu like symptoms " .  I also asked them to please not use that term when describing this treatment to others...  that it was an insult to the flu because the flu is not that mean.  I told them it was the flu on steroids..   Conseco style.  They laughed but they understood.  I was able to tell them about the really rough times...  and what they could do to help people that were just diagnosed and those that were going thru treatment.  It was nice to know that there are actually going to be people out there ready to help the next group of folks going thru treatment...  and that this group of nurses will know how to help patients and their families cope a little better.

On Thu, Jan 27, 2011 at 10:17 PM, Gloria <gadamscan@...> wrote:

 

Two things came to mind as I was reading Beth's post. 

First, I got fed up with people not understanding how we feel while doing tx. I guess that since we don't really look sick, they don't get it.  But, even as upset as I would get, I still wouldn't have wished another soul to feel how I was feeling.  However, my niece said something that I thought was great.  She said " No, but wouldn't you love for them to feel like you for 24 hrs? "   Now, I liked that one.

The other thing - I was talking with one of the Hep C nurses on the phone and we were discussing getting a support group started.  I liked what she said about that.  As she said, they know all the medical things about the Hep

and even the treatment; but, they honestly can not comprehend how any of us heppers feel.Uugg, I just remembered when I had that conversation with the nurse. It was the 7th of January, 2010.  It was that conversation that set my husband off for all of that year until he died.  He'd say that he was sick of hearing about Hep C.  I'd try to point out to him that it wasn't much different than doing something about our alcoholism.  They are both chronic conditions!!  But, he just wanted to focus on something so he could take his frustrations out on it.  Especially when he wanted to have his way!!

Gloria

ny I know it isnt funny but I  had to laugh at the prison comment. I feel you pain, they dont give a flying flip it isnt them that has had to go to hell and back they have no idea. have you ever watched that movie patch adams where the students had to go through some of the same things their paitents did. That is what I wish for them. I say that and I did wish it when I couldnt get my GP to understand what was going on with me. Not that I wanted her ill; just a little empthay and not so much dont forget to pay me. Well any way she is now having to go through chemo herself due to kidney cancer. Not pretty at all. It has attacked her whole body. I didnt wish for her to get sick just wanted her to experince what I was going through.

 

I agree with Don you dont want to damage your self with taking all that combo of drugs cant be good for you. You know depression can cause you body to have pain as well. You need to rest and give yourself time to heal from tx.

 

Take a deep breath and go in there, make sure your prepared write down what you are going to say - ask. That way if they get off track you can put them right back on it.

 

Good luck tomorrow I will be praying for you.

 

[Guest guest]

I can sure tell you that I don't think I would have made it, the first time around without the Hep C nurses. All my lab tests were sent to them as well as the Drs. So, if something didn't look right, they would be the first ones to see it. Then, I could rely on at least a weekly phone call, if not more often.During the clinical, I had the cute little clinician; but, I sure couldn't see weeping on his shoulders about my mental health. I don't think he was as old as my son. Yet, he was always there for me. But, when it would get really bad, I would call the local Hep

C nurses. It turned out that the nurse that I always spoke with, was also good friends with the Hep C nurse at the clinic. That time that I had met with the surgeon before my surgery and I came away just burning with anger at his bedside manner, I sent the local nurse an email. Well, she answered back really quick; but, told me that she was at a medical conference in Toronto, with the nurse from the clinic AND my Gastro was due to give a talk. LOL

I was lucky enough to meet with a group of nurses last week that will be manning a 800 line for hep c. After I told them my story they had questions... their first question was "What is treatment really like?" I quickly dispelled the myth that the medications produced "flu like symptoms". I also asked them to please not use that term when describing this treatment to others... that it was an insult to the flu because the flu is not that mean. I told them it was the flu on steroids.. Conseco style. They laughed but they understood. I was able to tell them about the really rough times... and what they could do to help people that were just diagnosed and those that were going thru treatment. It was nice to know that there are actually going to be people out there ready to help the next group of folks going thru treatment... and that this group of nurses will know how to

help patients and their families cope a little better.

On Thu, Jan 27, 2011 at 10:17 PM, Gloria <gadamscan@...> wrote:

Two things came to mind as I was reading Beth's post.

First, I got fed up with people not understanding how we feel while doing tx. I guess that since we don't really look sick, they don't get it. But, even as upset as I would get, I still wouldn't have wished another soul to feel how I was feeling. However, my niece said something that I thought was great. She said "No, but wouldn't you love for them to feel like you for 24 hrs?" Now, I liked that one.

The other thing - I was talking with one of the Hep C nurses on the phone and we were discussing getting a support group started. I liked what she said about that. As she said, they know all the medical things about the Hep

and even the treatment; but, they honestly can not comprehend how any of us heppers feel.Uugg, I just remembered when I had that conversation with the nurse. It was the 7th of January, 2010. It was that conversation that set my husband off for all of that year until he died. He'd say that he was sick of hearing about Hep C. I'd try to point out to him that it wasn't much different than doing something about our alcoholism. They are both chronic conditions!! But, he just wanted to focus on something so he could take his frustrations out on it. Especially when he wanted to have his way!!

Gloria

ny I know it isnt funny but I had to laugh at the prison comment. I feel you pain, they dont give a flying flip it isnt them that has had to go to hell and back they have no idea. have you ever watched that movie patch adams where the students had to go through some of the same things their paitents did. That is what I wish for them. I say that and I did wish it when I couldnt get my GP to understand what was going on with me. Not that I wanted her ill; just a little empthay and not so much dont forget to pay me. Well any way she is now having to go through chemo herself due to kidney cancer. Not pretty at all. It has attacked her whole body. I didnt wish for her to get sick just wanted her to experince what I was going through.

I agree with Don you dont want to damage your self with taking all that combo of drugs cant be good for you. You know depression can cause you body to have pain as well. You need to rest and give yourself time to heal from tx.

Take a deep breath and go in there, make sure your prepared write down what you are going to say - ask. That way if they get off track you can put them right back on it.

Good luck tomorrow I will be praying for you.

[Guest guest]

I told these nurses the story about my nurse ...  I asked them to please be for someone else.  I think my story had an impact on them. On Thu, Jan 27, 2011 at 11:22 PM, Gloria <gadamscan@...> wrote:

 

I can sure tell you that I don't think I would have made it, the first time around without the Hep C nurses.  All my lab tests were sent to them as well as the Drs.  So, if something didn't look right, they would be the first ones to see it.  Then, I could rely on at least a weekly phone call, if not more often.

During the clinical, I had the cute little clinician; but, I sure couldn't see weeping on his shoulders about my mental health.  I don't think he was as old as my son.  Yet, he was always there for me.  But, when it would get really bad, I would call the local Hep

C nurses.  It turned out that the nurse that I always spoke with, was also good friends with the Hep C nurse at the clinic.  That time that I had met with the surgeon before my surgery and I came away just burning with anger at his bedside manner, I sent the local nurse an email.  Well, she answered back really quick; but, told me that she was at a medical conference in Toronto, with the nurse from the clinic AND my Gastro was due to give a talk.  LOL

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