Re: Pain med withdrawal

[Guest guest]

Kerry

But you're so alive and well.....even in the mess and the issues, I just

hear and feel your strength and determination.

As to the pain meds, we've been overconditioned a bit to want to be

strong and want to be off and want to show how macho we are. Your

warning is one I'm sure most of us need. I didn't start using them after

my VATS. Well, I was fine, but my lungs needed them to breathe right.

They felt the pain even if I didn't. So, on pain meds and breathing

improved. I know you're on so many things that you'd love to reduce.

But, your body and other things will tell you at what pace. Remember,

you have a lifetime to do it now.

As to your daughter, yes, it sucks that one so young has to be exposed

to such hard issues. I think of it as their " loss of innocence. "

Everything isn't as we wish it was. On the other hand, she's getting to

experience some amazing things that have to be teaching her lessons many

adults don't appreciate. She's seen a miracle in you. She's seeing a

model of strength and when she faces problems in life she'll relate

back. I'd guarantee she's experiencing a family closeness that few have.

Her family isn't just spending time together, but sharing and supporting

and feeling. She feels bad she forgets and you feel bad you had to

remind. But, she'd feel so much worse if she made you sick on top of how

you'd feel. It's another hard sacrifice for both of you, but even there

it teaches a lot about decisions based on circumstances.

I think she knows how lucky she is to have such an incredible mother. I

know you feel lucky to have her.

Thanks for sharing what is going on. Your cheering section here is

active and loud.

>

> I have a little note of warning for all (and praise for my daughter)

>

> I posted the other night and said that I was having problems due to

> moving down on the pain meds too quickly. I cannot overstate how

> incredibly bad this feels. I had just about every symptom listed on

> the pamphlet and online. I was hot/cold, shivering, diarrhea,

> nausea, vomiting and just plain icky ALL over. I went back up to 50

> w/ 2 -25's on Thursday, but had to change them sooner than the 72

> hrs. after vomiting at 1am on Saturday night. I am now on my 3rd

> dose of the 50 after dropping (stupidly down to 25 for one dose) and

> hoping to feel better today. I spent almost the entire day

> yesterday laying around/sleeping. To top it off my daughter got the

> stomach bug and had problems both ends yesterday and both kids are

> home the last couple days for snow days (big snow ice storm here).

> So, I was really stressed w/ feeling bad myself and worried about

> catching her germs and all of this has made my blood sugar go crazy

> and that's not helping. So speaking of my daughter, let me tell you

> I was an emotional basketcase last night. We spent the day taking

> care of her and trying to keep things clean for me. My husband was

> cleaning both bathrooms and kept telling her to stay out of my

> bathroom and bedroom. After the 50th time of cleaning and lysol she

> came in again and had her hands all over my treadmill. I said

> you've got to stop. She looked like I'd just called her a lepper

> and I felt so bad. I was in tears in my bathroom after that and

> told my husband I felt bad and surely hurt her feelings. He said he

> would talk to her at bedtime. Shortly after I walked into the

> kitchen and she jumped. I didn't know what she was doing at the

> time, she flipped over a piece of paper and started drawing a

> flower. A few minutes later, she handed me this paper. Of course,

> it was a purple (my favorite color) flower and on the other side

> said, I'm gonna get it so I don't mess it up...

>

> Dear Mom,

> When I heard and saw your face and turned around a tear fell down my

> face. It was not because that you hurt my feelings. It was because

> I really wanted to play with you and hang with you. Love, Kami

>

> I really started bawling then. I called her in and told her I was

> so upset because I didn't like to tell her to not be around me or

> spend time with her, but that because of all the medication I'm on I

> have to be extra careful about getting sick. I have to be careful

> with the new lungs and any colds are even more serious and I'm way

> more likely to get hers or anyones germs right now. Not only did

> she write me a note to console me, but now as I was explaining it to

> her she was wiping my tears w/ tissue. I told her I just loved her

> so much and I wanted to be a good mom and was babbling. She told me

> that I was the best mom ever and it didn't matter if I had tubes,

> hoses, the new lungs or whatever. She was so grown up in dealing w/

> everything in the hospital, in all the follow up recovery, and now

> again. Of course as soon as I think this to myself I feel guilty

> that she has to be " grown up " and dealing w/ it. I just need to

> stop that cycle of thought or I'll drive myself crazy. I just need

> to feel lucky that I have such a wonderful, strong and caring

> child. Also, I just wanted to tell everyone that these withdrawal

> symptoms are horrendous and when they went to reduce my meds I was

> only led to believe I'd be dealing w/ the increase in pain by

> decreasing the pain meds. I never should have been decreased this

> quick, first it was dangerous, second it was stupid and unneccessary

> to put me through this. There is too much going on to have to had

> figured out that all this was withdrawal and not

> infection/rejection/blood sugar problems, etc. I will be doing the

> rest of this weening down very, very gradually. Warning to all,

> never stop asking questions, researching and looking into things

> yourself... you are your own and best medical advocate.

> Take care,

> Kerry

> Bi-lateral 12/18/08

>

[Guest guest]

Kerry,

You are one of the most courageous individuals (along with our other transplantees) that I've every had the privilege of knowing. Congratulations on having such a wonderful family. Your children and your husband love you so much and are showing their committment to you every day.

Lesson learned when it comes to reducing the pain medication. It's good information and a good reminder for all of us.

Keep going Kerry. Just one breath at a time. We're all in your corner!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wednesday, January 28, 2009 11:00:19 AMSubject: Pain med withdrawal

I have a little note of warning for all (and praise for my daughter)I posted the other night and said that I was having problems due to moving down on the pain meds too quickly. I cannot overstate how incredibly bad this feels. I had just about every symptom listed on the pamphlet and online. I was hot/cold, shivering, diarrhea, nausea, vomiting and just plain icky ALL over. I went back up to 50 w/ 2 -25's on Thursday, but had to change them sooner than the 72 hrs. after vomiting at 1am on Saturday night. I am now on my 3rd dose of the 50 after dropping (stupidly down to 25 for one dose) and hoping to feel better today. I spent almost the entire day yesterday laying around/sleeping. To top it off my daughter got the stomach bug and had problems both ends yesterday and both kids are home the last couple days for snow days (big snow ice storm here). So, I was really stressed w/ feeling bad myself

and worried about catching her germs and all of this has made my blood sugar go crazy and that's not helping. So speaking of my daughter, let me tell you I was an emotional basketcase last night. We spent the day taking care of her and trying to keep things clean for me. My husband was cleaning both bathrooms and kept telling her to stay out of my bathroom and bedroom. After the 50th time of cleaning and lysol she came in again and had her hands all over my treadmill. I said you've got to stop. She looked like I'd just called her a lepper and I felt so bad. I was in tears in my bathroom after that and told my husband I felt bad and surely hurt her feelings. He said he would talk to her at bedtime. Shortly after I walked into the kitchen and she jumped. I didn't know what she was doing at the time, she flipped over a piece of paper and started drawing a flower. A few minutes later, she handed me

this paper. Of course, it was a purple (my favorite color) flower and on the other side said, I'm gonna get it so I don't mess it up...Dear Mom,When I heard and saw your face and turned around a tear fell down my face. It was not because that you hurt my feelings. It was because I really wanted to play with you and hang with you. Love, KamiI really started bawling then. I called her in and told her I was so upset because I didn't like to tell her to not be around me or spend time with her, but that because of all the medication I'm on I have to be extra careful about getting sick. I have to be careful with the new lungs and any colds are even more serious and I'm way more likely to get hers or anyones germs right now. Not only did she write me a note to console me, but now as I was explaining it to her she was wiping my tears w/ tissue. I told her I just loved her so much and I wanted

to be a good mom and was babbling. She told me that I was the best mom ever and it didn't matter if I had tubes, hoses, the new lungs or whatever. She was so grown up in dealing w/ everything in the hospital, in all the follow up recovery, and now again. Of course as soon as I think this to myself I feel guilty that she has to be "grown up" and dealing w/ it. I just need to stop that cycle of thought or I'll drive myself crazy. I just need to feel lucky that I have such a wonderful, strong and caring child. Also, I just wanted to tell everyone that these withdrawal symptoms are horrendous and when they went to reduce my meds I was only led to believe I'd be dealing w/ the increase in pain by decreasing the pain meds. I never should have been decreased this quick, first it was dangerous, second it was stupid and unneccessary to put me through this. There is too much going on to have to had figured

out that all this was withdrawal and not infection/rejection /blood sugar problems, etc. I will be doing the rest of this weening down very, very gradually. Warning to all, never stop asking questions, researching and looking into things yourself... you are your own and best medical advocate. Take care,KerryBi-lateral 12/18/08

[Guest guest]

Kerry,

You are one of the most courageous individuals (along with our other transplantees) that I've every had the privilege of knowing. Congratulations on having such a wonderful family. Your children and your husband love you so much and are showing their committment to you every day.

Lesson learned when it comes to reducing the pain medication. It's good information and a good reminder for all of us.

Keep going Kerry. Just one breath at a time. We're all in your corner!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wednesday, January 28, 2009 11:00:19 AMSubject: Pain med withdrawal

I have a little note of warning for all (and praise for my daughter)I posted the other night and said that I was having problems due to moving down on the pain meds too quickly. I cannot overstate how incredibly bad this feels. I had just about every symptom listed on the pamphlet and online. I was hot/cold, shivering, diarrhea, nausea, vomiting and just plain icky ALL over. I went back up to 50 w/ 2 -25's on Thursday, but had to change them sooner than the 72 hrs. after vomiting at 1am on Saturday night. I am now on my 3rd dose of the 50 after dropping (stupidly down to 25 for one dose) and hoping to feel better today. I spent almost the entire day yesterday laying around/sleeping. To top it off my daughter got the stomach bug and had problems both ends yesterday and both kids are home the last couple days for snow days (big snow ice storm here). So, I was really stressed w/ feeling bad myself

and worried about catching her germs and all of this has made my blood sugar go crazy and that's not helping. So speaking of my daughter, let me tell you I was an emotional basketcase last night. We spent the day taking care of her and trying to keep things clean for me. My husband was cleaning both bathrooms and kept telling her to stay out of my bathroom and bedroom. After the 50th time of cleaning and lysol she came in again and had her hands all over my treadmill. I said you've got to stop. She looked like I'd just called her a lepper and I felt so bad. I was in tears in my bathroom after that and told my husband I felt bad and surely hurt her feelings. He said he would talk to her at bedtime. Shortly after I walked into the kitchen and she jumped. I didn't know what she was doing at the time, she flipped over a piece of paper and started drawing a flower. A few minutes later, she handed me

this paper. Of course, it was a purple (my favorite color) flower and on the other side said, I'm gonna get it so I don't mess it up...Dear Mom,When I heard and saw your face and turned around a tear fell down my face. It was not because that you hurt my feelings. It was because I really wanted to play with you and hang with you. Love, KamiI really started bawling then. I called her in and told her I was so upset because I didn't like to tell her to not be around me or spend time with her, but that because of all the medication I'm on I have to be extra careful about getting sick. I have to be careful with the new lungs and any colds are even more serious and I'm way more likely to get hers or anyones germs right now. Not only did she write me a note to console me, but now as I was explaining it to her she was wiping my tears w/ tissue. I told her I just loved her so much and I wanted

to be a good mom and was babbling. She told me that I was the best mom ever and it didn't matter if I had tubes, hoses, the new lungs or whatever. She was so grown up in dealing w/ everything in the hospital, in all the follow up recovery, and now again. Of course as soon as I think this to myself I feel guilty that she has to be "grown up" and dealing w/ it. I just need to stop that cycle of thought or I'll drive myself crazy. I just need to feel lucky that I have such a wonderful, strong and caring child. Also, I just wanted to tell everyone that these withdrawal symptoms are horrendous and when they went to reduce my meds I was only led to believe I'd be dealing w/ the increase in pain by decreasing the pain meds. I never should have been decreased this quick, first it was dangerous, second it was stupid and unneccessary to put me through this. There is too much going on to have to had figured

out that all this was withdrawal and not infection/rejection /blood sugar problems, etc. I will be doing the rest of this weening down very, very gradually. Warning to all, never stop asking questions, researching and looking into things yourself... you are your own and best medical advocate. Take care,KerryBi-lateral 12/18/08

[Guest guest]

Kerry...you and Kami will be ok. Love gets us through so much and you both have that for each other. She really misses "you" doesn't she...

I mentioned to you before, I really really relate to coming off the pain patch. I had the same horrible withdrawal at first and then went up again and then it took me about two months to get "off". Couldn't breathe well, increased O2.

You have so much to deal with. Hang on...this too shall pass.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Pain med withdrawal

I have a little note of warning for all (and praise for my daughter)I posted the other night and said that I was having problems due to moving down on the pain meds too quickly. I cannot overstate how incredibly bad this feels. I had just about every symptom listed on the pamphlet and online. I was hot/cold, shivering, diarrhea, nausea, vomiting and just plain icky ALL over. I went back up to 50 w/ 2 -25's on Thursday, but had to change them sooner than the 72 hrs. after vomiting at 1am on Saturday night. I am now on my 3rd dose of the 50 after dropping (stupidly down to 25 for one dose) and hoping to feel better today. I spent almost the entire day yesterday laying around/sleeping. To top it off my daughter got the stomach bug and had problems both ends yesterday and both kids are home the last couple days for snow days (big snow ice storm here). So, I was really stressed w/ feeling bad myself and worried about catching her germs and all of this has made my blood sugar go crazy and that's not helping. So speaking of my daughter, let me tell you I was an emotional basketcase last night. We spent the day taking care of her and trying to keep things clean for me. My husband was cleaning both bathrooms and kept telling her to stay out of my bathroom and bedroom. After the 50th time of cleaning and lysol she came in again and had her hands all over my treadmill. I said you've got to stop. She looked like I'd just called her a lepper and I felt so bad. I was in tears in my bathroom after that and told my husband I felt bad and surely hurt her feelings. He said he would talk to her at bedtime. Shortly after I walked into the kitchen and she jumped. I didn't know what she was doing at the time, she flipped over a piece of paper and started drawing a flower. A few minutes later, she handed me this paper. Of course, it was a purple (my favorite color) flower and on the other side said, I'm gonna get it so I don't mess it up...Dear Mom,When I heard and saw your face and turned around a tear fell down my face. It was not because that you hurt my feelings. It was because I really wanted to play with you and hang with you. Love, KamiI really started bawling then. I called her in and told her I was so upset because I didn't like to tell her to not be around me or spend time with her, but that because of all the medication I'm on I have to be extra careful about getting sick. I have to be careful with the new lungs and any colds are even more serious and I'm way more likely to get hers or anyones germs right now. Not only did she write me a note to console me, but now as I was explaining it to her she was wiping my tears w/ tissue. I told her I just loved her so much and I wanted to be a good mom and was babbling. She told me that I was the best mom ever and it didn't matter if I had tubes, hoses, the new lungs or whatever. She was so grown up in dealing w/ everything in the hospital, in all the follow up recovery, and now again. Of course as soon as I think this to myself I feel guilty that she has to be "grown up" and dealing w/ it. I just need to stop that cycle of thought or I'll drive myself crazy. I just need to feel lucky that I have such a wonderful, strong and caring child. Also, I just wanted to tell everyone that these withdrawal symptoms are horrendous and when they went to reduce my meds I was only led to believe I'd be dealing w/ the increase in pain by decreasing the pain meds. I never should have been decreased this quick, first it was dangerous, second it was stupid and unneccessary to put me through this. There is too much going on to have to had figured out that all this was withdrawal and not infection/rejection/blood sugar problems, etc. I will be doing the rest of this weening down very, very gradually. Warning to all, never stop asking questions, researching and looking into things yourself... you are your own and best medical advocate. Take care,KerryBi-lateral 12/18/08

[Guest guest]

Kerry...you and Kami will be ok. Love gets us through so much and you both have that for each other. She really misses "you" doesn't she...

I mentioned to you before, I really really relate to coming off the pain patch. I had the same horrible withdrawal at first and then went up again and then it took me about two months to get "off". Couldn't breathe well, increased O2.

You have so much to deal with. Hang on...this too shall pass.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Pain med withdrawal

I have a little note of warning for all (and praise for my daughter)I posted the other night and said that I was having problems due to moving down on the pain meds too quickly. I cannot overstate how incredibly bad this feels. I had just about every symptom listed on the pamphlet and online. I was hot/cold, shivering, diarrhea, nausea, vomiting and just plain icky ALL over. I went back up to 50 w/ 2 -25's on Thursday, but had to change them sooner than the 72 hrs. after vomiting at 1am on Saturday night. I am now on my 3rd dose of the 50 after dropping (stupidly down to 25 for one dose) and hoping to feel better today. I spent almost the entire day yesterday laying around/sleeping. To top it off my daughter got the stomach bug and had problems both ends yesterday and both kids are home the last couple days for snow days (big snow ice storm here). So, I was really stressed w/ feeling bad myself and worried about catching her germs and all of this has made my blood sugar go crazy and that's not helping. So speaking of my daughter, let me tell you I was an emotional basketcase last night. We spent the day taking care of her and trying to keep things clean for me. My husband was cleaning both bathrooms and kept telling her to stay out of my bathroom and bedroom. After the 50th time of cleaning and lysol she came in again and had her hands all over my treadmill. I said you've got to stop. She looked like I'd just called her a lepper and I felt so bad. I was in tears in my bathroom after that and told my husband I felt bad and surely hurt her feelings. He said he would talk to her at bedtime. Shortly after I walked into the kitchen and she jumped. I didn't know what she was doing at the time, she flipped over a piece of paper and started drawing a flower. A few minutes later, she handed me this paper. Of course, it was a purple (my favorite color) flower and on the other side said, I'm gonna get it so I don't mess it up...Dear Mom,When I heard and saw your face and turned around a tear fell down my face. It was not because that you hurt my feelings. It was because I really wanted to play with you and hang with you. Love, KamiI really started bawling then. I called her in and told her I was so upset because I didn't like to tell her to not be around me or spend time with her, but that because of all the medication I'm on I have to be extra careful about getting sick. I have to be careful with the new lungs and any colds are even more serious and I'm way more likely to get hers or anyones germs right now. Not only did she write me a note to console me, but now as I was explaining it to her she was wiping my tears w/ tissue. I told her I just loved her so much and I wanted to be a good mom and was babbling. She told me that I was the best mom ever and it didn't matter if I had tubes, hoses, the new lungs or whatever. She was so grown up in dealing w/ everything in the hospital, in all the follow up recovery, and now again. Of course as soon as I think this to myself I feel guilty that she has to be "grown up" and dealing w/ it. I just need to stop that cycle of thought or I'll drive myself crazy. I just need to feel lucky that I have such a wonderful, strong and caring child. Also, I just wanted to tell everyone that these withdrawal symptoms are horrendous and when they went to reduce my meds I was only led to believe I'd be dealing w/ the increase in pain by decreasing the pain meds. I never should have been decreased this quick, first it was dangerous, second it was stupid and unneccessary to put me through this. There is too much going on to have to had figured out that all this was withdrawal and not infection/rejection/blood sugar problems, etc. I will be doing the rest of this weening down very, very gradually. Warning to all, never stop asking questions, researching and looking into things yourself... you are your own and best medical advocate. Take care,KerryBi-lateral 12/18/08

[Guest guest]

Kerry...you and Kami will be ok. Love gets us through so much and you both have that for each other. She really misses "you" doesn't she...

I mentioned to you before, I really really relate to coming off the pain patch. I had the same horrible withdrawal at first and then went up again and then it took me about two months to get "off". Couldn't breathe well, increased O2.

You have so much to deal with. Hang on...this too shall pass.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Pain med withdrawal

I have a little note of warning for all (and praise for my daughter)I posted the other night and said that I was having problems due to moving down on the pain meds too quickly. I cannot overstate how incredibly bad this feels. I had just about every symptom listed on the pamphlet and online. I was hot/cold, shivering, diarrhea, nausea, vomiting and just plain icky ALL over. I went back up to 50 w/ 2 -25's on Thursday, but had to change them sooner than the 72 hrs. after vomiting at 1am on Saturday night. I am now on my 3rd dose of the 50 after dropping (stupidly down to 25 for one dose) and hoping to feel better today. I spent almost the entire day yesterday laying around/sleeping. To top it off my daughter got the stomach bug and had problems both ends yesterday and both kids are home the last couple days for snow days (big snow ice storm here). So, I was really stressed w/ feeling bad myself and worried about catching her germs and all of this has made my blood sugar go crazy and that's not helping. So speaking of my daughter, let me tell you I was an emotional basketcase last night. We spent the day taking care of her and trying to keep things clean for me. My husband was cleaning both bathrooms and kept telling her to stay out of my bathroom and bedroom. After the 50th time of cleaning and lysol she came in again and had her hands all over my treadmill. I said you've got to stop. She looked like I'd just called her a lepper and I felt so bad. I was in tears in my bathroom after that and told my husband I felt bad and surely hurt her feelings. He said he would talk to her at bedtime. Shortly after I walked into the kitchen and she jumped. I didn't know what she was doing at the time, she flipped over a piece of paper and started drawing a flower. A few minutes later, she handed me this paper. Of course, it was a purple (my favorite color) flower and on the other side said, I'm gonna get it so I don't mess it up...Dear Mom,When I heard and saw your face and turned around a tear fell down my face. It was not because that you hurt my feelings. It was because I really wanted to play with you and hang with you. Love, KamiI really started bawling then. I called her in and told her I was so upset because I didn't like to tell her to not be around me or spend time with her, but that because of all the medication I'm on I have to be extra careful about getting sick. I have to be careful with the new lungs and any colds are even more serious and I'm way more likely to get hers or anyones germs right now. Not only did she write me a note to console me, but now as I was explaining it to her she was wiping my tears w/ tissue. I told her I just loved her so much and I wanted to be a good mom and was babbling. She told me that I was the best mom ever and it didn't matter if I had tubes, hoses, the new lungs or whatever. She was so grown up in dealing w/ everything in the hospital, in all the follow up recovery, and now again. Of course as soon as I think this to myself I feel guilty that she has to be "grown up" and dealing w/ it. I just need to stop that cycle of thought or I'll drive myself crazy. I just need to feel lucky that I have such a wonderful, strong and caring child. Also, I just wanted to tell everyone that these withdrawal symptoms are horrendous and when they went to reduce my meds I was only led to believe I'd be dealing w/ the increase in pain by decreasing the pain meds. I never should have been decreased this quick, first it was dangerous, second it was stupid and unneccessary to put me through this. There is too much going on to have to had figured out that all this was withdrawal and not infection/rejection/blood sugar problems, etc. I will be doing the rest of this weening down very, very gradually. Warning to all, never stop asking questions, researching and looking into things yourself... you are your own and best medical advocate. Take care,KerryBi-lateral 12/18/08