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Venting...Round Two

Posted by Steve L on 12/16/99 at 00:00 (013833)

Some days you step in it, some days you don't...
I had to pull off the road three times tonight on my way home to heave my guts out. Had my ten year old son with me. I am as concerned about PF's impact on his young mind as I am for my own pain. He should not have to witness such things. My first post was laden with positive thoughts, and, as one of you so accurately responded, the next day's pain can return us to our emotional depths. There is so much to say, yet I have grown sick of saying it. The helplessness some of us feel can be as debilitating as the pain.

But, hey, there's always the chance that tomorrow will be better, right? That is my wish for all of you.

Once again, thanks for tolerating my rant.
Steve


Re: Venting...Round Two

Elise M. on 12/17/99 at 00:00 (013836)

Dear Steve,
We are all hear for you to listen to your successes as well as your suffering. I hear what you are saying, I too have a ten year old child who has to see my suffering. She's very good about it as she is naturally a nurturer. There are times when I feel very badly about not being able to do some of the things that we both used to enjoy. She accepts it just like she accepts all the changes in her life, it's just that, it's a change. We find other things to do, things that don't require such high energy activities. I find myself watching her play school basketball instead of playing basketball out in the driveway with her. If I read your comment right, you were physically sick....how does that tie into PF? Are you on high dose antiinflammatories that might upset the stomach? I sincerely hope you are feeling better and once again, we are all hear to help each other feel better. God Bless.....
El.

Re: Venting...Round Two

Nancy S. on 12/17/99 at 00:00 (013841)

Dear Steve, I'm so sorry you had a bad day yesterday. This is such a rollercoaster ride, no wonder you got sick! Had you overdone activities yesterday and just got sick from the pain? I find myself with a nauseous feeling about 3 days a week.
I posted a really positive message a couple of days ago, and then the very next day had bad pain, felt sad about the things I can't do right now, and cried half the day. But today I feel better, mentally and physically. So it goes, I guess. The sun is shining like crazy here in Maine this morning -- I hope it is where you are too. As my ex-Buddhist husband says, Everything is temporary -- on a bad day, that's a comfort to me. I hope today is better for you, and that the better days become more and more frequent. Best, from Nancy S.

Re: Venting...Round Two

alan k on 12/17/99 at 00:00 (013843)

I had a really bad day yesterday too.

I had a grease fire which became a plastic fire from a microwave the house owners so wisely installed over the grill. The whole house was filled with black smoke, and with wet rag to my face I proceded to put it out, and then wash the walls, etc. A rugged day for someone in my condition. While trying to wash the ceiling I fell off my chair and landed HARD on my poor little feets.

I am a not-yet ex-Buddhist and hopefully always will be. I have even trained seriously in Asia, spending all night in meditation wracked with incredible pain (far surpassing anything with PF or anything else), contemplating my body as a corpse, negotiating my mind in isolation and without distractions to take me away for a while. This may have helped a tiny bit with dealing with my condition, but I can clearly state that the condition gave me a nice hard emotional wallop far exceeding anything I would have thought possible. Despite the fact that, after all, it's just one part of the body and it's not like everything in life is ruined, I have found it too much for me to deal with.

My experience with this foot pain, and the revolution it caused in my life (including making walking meditation-- my favorite-- perhaps forever beyond my reach), has been at least as instructive as all that I have worked so hard on in the past. I still can't believe how upsetting this whole thing has been. I had no idea how addicted I was to walking! I used to look out the window at people walking and pine. I don't do that too much anymore, but still everyday presents a challenge of some sort, and so I am %100 sure that my mind is in Buddhist training every day, whether I like it or not. There are many things about how I feel in life now which are better than the way I was before.

And still, after the fire (which came with other recent dissappointments I won't go into), I was seriously beaten down again. I am sure if I was healthy that I wouldn't have been too bad off, but it was the last thing I needed now.
I sometimes over-estimate my ability to deal with trouble like this, which then leads me to loosen my watch over my mind, and then I get a lickin' for that. One has to always guard the mind against repetitive thinking down certain tracks. If you ever think you don't need to do that, that you are 'over it' or 'strong' you are confusing the action of guarding your mind (or heart) with some property pertaining to 'you.' Actually, it is the guarding of the heart and not 'you' which is strong.

I definitely know how you feel about these sudden returns to sadness.

At least we know that the sadness changes just as fast as anything else. I always tell myself, in the midst of bad feelings, that soon I won't feel this way but some other way, and not to give how I feel at any one moment too much importance. Of course, this doesn't completely eliminate the problem, but helps.


alan k


Re: Venting...Round Two

melody on 12/17/99 at 00:00 (013850)

Sorry to hear that you are having such a bad time.

In respect of your son.....please please please be honest with him about why you feel the way you do. He will understand so much better if you tell him what is wrong rather than protect him from it all. I teach much younger children and if they are not told the truth they start to imagine the worst..after all as one of my 5 year olds told me everyone who is sick dies! I think a 10year old mind probably works in a similar way. Children are very resilient and can cope with far more than we think they can. This is also meant to be saying that I am sure he will be ok and I hope you will too!

Bye
Mel


Re: Venting...Round Two

vlj on 12/17/99 at 00:00 (013852)

Until I was crippled two years ago with pf I never truly understood the meaning of: 'That which does not kill me makes me grow stronger.' I am grateful to learn that I can cope with these losses and learn new ways to find joy, but there are days...
Don't try to protect your son. Being honest with him is the best gift you can give him and in talking with him he can talk back and find ways to feel he can be a part of your life, and maybe even help in small, sweet ways...and he will know the name of the scary monster that has crippled his father. 'Protecting him' is a burden to both of you.

Re: Venting...Round Two

Nancy S. on 12/17/99 at 00:00 (013854)

Alan, maybe I shouldn't have referred to my husband as an ex Buddhist. He was part of the 'official' organization in Boulder for many years. He left it ten years ago, but now goes once a week to a Tibetan Buddhist meditation group in Portland, and much Buddhist philosophy is still an integral part of his thinking. I have learned so much from him in his approach to life, and I attribute plenty of it to Buddhism. I'm glad it helps you too. Sorry about the fire and the pain it caused you! Yikes. Here's to no more of that -- Nancy S.

Re: Venting...Round Two

Elise M. on 12/17/99 at 00:00 (013865)

Hi Nancy,
It was nice to hear that you are from Maine as I too am from Maine. We just moved here in June, same time my PF set in. I question whether it was climate related or terrain related. Maybe you could share some insite with me on this topic. Would appreciate talking to you in detail. I am in aol instant messenger as LemLpn. You might want to try and catch me in there. Until I hear from you, feel better.
El.

Re: Venting...Round Two

Steve L on 12/18/99 at 00:00 (013879)

Elise, the vomiting is an all too regular occurance resulting from prolonged pain with little or no relief. As to how much of this is the result of the periferal emotional strain of PF, I cannot say with certainty. I only know that it strikes almost without warning and is not the result of excess anti-inflamatories, as they are no longer a part of my treatment.

Thanks for your concern,

Steve


Re: Venting...Round Two

Steve L on 12/18/99 at 00:00 (013880)

vlj, Melody, I appreciate your opinions and input. My sons have known this disease their entire lives, and please don't think that it is not a frequent and open topic for discussion amongst us. With that said, I do not retract my earlier comments regarding my desire to minimize PF's impact on their daily lives. I sincerely wish my problem was not their's, and that was the point of my post.(That and the desire for some anonymous whining!)

Wishing you a Joyous Holiday season,

Steve


Re: Venting...Round Two

vlj on 12/18/99 at 00:00 (013889)

My heart goes out to you Steve, and it sounds to me like you are a terrific dad...I send all the good thoughts and wishes I possibly can your way in hopes that one day...as soon as possible...you'll experience some relief for you and your family.



Re: Venting...Round Two -- to Elise

Nancy S. on 12/18/99 at 00:00 (013897)

Hi Elise -- Thanks for your responses to my messages on here. Hey, nice to find a fellow Mainiac! Welcome to Maine. I've been here 11 years, so I can't attribute my PF to climate or terrain, but have you been doing different activities since coming here in June? Or same activities on our famous rockier terrain? The terrain around my barn, which is not very smooth, did not help my condition, I'm sure, but it isn't related to Maine per se. You have written nice supportive messages to others on this board, I've noticed. You're a positive presence. I only have WebTV so I think can't access you where you mentioned. But if you'd like to email me, my address is:
(email removed)
Sounds like you're having a lot of good days mixed in with the bad. I'd like to hear your prior experiences in dealing with this thing. I've had a lousy podiatrist, and didn't figure that out till I first found this site, only about a week ago. So I'm trying a lot of things now that I never even heard of till I read Scott's site. So far so good, I'd say. I did have a really bad day after writing my positive treatise 3 or 4 days ago -- cried all day over having to cut back on my antiquing work. But I'm adjusting to the idea (the necessity) again. Hope you're having a less-pain day today. --Nancy S.

Re: Venting...Round Two

melody on 12/18/99 at 00:00 (013903)

Steve,
Anonymous whining is good for the soul!!!!!

I am a newcomer to the pain related to PF but have suffered with a rare wrist problem for years and years..... know a little bit about dealing with pain!!!*S* One thing my pain management manual suggests is that one should keep a 'bitchin' book!!! Just write down all those negative thoughs about how you feel. Research has shown that this really does help people with a chronoc pain problem. Also means you don't complain over and over to the people who will listen!!!!!

I wish you luck with your recovery and whine on here whenever you want to!!!

Mel


Re: Venting...Round Two

Elise M. on 12/17/99 at 00:00 (013836)

Dear Steve,
We are all hear for you to listen to your successes as well as your suffering. I hear what you are saying, I too have a ten year old child who has to see my suffering. She's very good about it as she is naturally a nurturer. There are times when I feel very badly about not being able to do some of the things that we both used to enjoy. She accepts it just like she accepts all the changes in her life, it's just that, it's a change. We find other things to do, things that don't require such high energy activities. I find myself watching her play school basketball instead of playing basketball out in the driveway with her. If I read your comment right, you were physically sick....how does that tie into PF? Are you on high dose antiinflammatories that might upset the stomach? I sincerely hope you are feeling better and once again, we are all hear to help each other feel better. God Bless.....
El.

Re: Venting...Round Two

Nancy S. on 12/17/99 at 00:00 (013841)

Dear Steve, I'm so sorry you had a bad day yesterday. This is such a rollercoaster ride, no wonder you got sick! Had you overdone activities yesterday and just got sick from the pain? I find myself with a nauseous feeling about 3 days a week.
I posted a really positive message a couple of days ago, and then the very next day had bad pain, felt sad about the things I can't do right now, and cried half the day. But today I feel better, mentally and physically. So it goes, I guess. The sun is shining like crazy here in Maine this morning -- I hope it is where you are too. As my ex-Buddhist husband says, Everything is temporary -- on a bad day, that's a comfort to me. I hope today is better for you, and that the better days become more and more frequent. Best, from Nancy S.

Re: Venting...Round Two

alan k on 12/17/99 at 00:00 (013843)

I had a really bad day yesterday too.

I had a grease fire which became a plastic fire from a microwave the house owners so wisely installed over the grill. The whole house was filled with black smoke, and with wet rag to my face I proceded to put it out, and then wash the walls, etc. A rugged day for someone in my condition. While trying to wash the ceiling I fell off my chair and landed HARD on my poor little feets.

I am a not-yet ex-Buddhist and hopefully always will be. I have even trained seriously in Asia, spending all night in meditation wracked with incredible pain (far surpassing anything with PF or anything else), contemplating my body as a corpse, negotiating my mind in isolation and without distractions to take me away for a while. This may have helped a tiny bit with dealing with my condition, but I can clearly state that the condition gave me a nice hard emotional wallop far exceeding anything I would have thought possible. Despite the fact that, after all, it's just one part of the body and it's not like everything in life is ruined, I have found it too much for me to deal with.

My experience with this foot pain, and the revolution it caused in my life (including making walking meditation-- my favorite-- perhaps forever beyond my reach), has been at least as instructive as all that I have worked so hard on in the past. I still can't believe how upsetting this whole thing has been. I had no idea how addicted I was to walking! I used to look out the window at people walking and pine. I don't do that too much anymore, but still everyday presents a challenge of some sort, and so I am %100 sure that my mind is in Buddhist training every day, whether I like it or not. There are many things about how I feel in life now which are better than the way I was before.

And still, after the fire (which came with other recent dissappointments I won't go into), I was seriously beaten down again. I am sure if I was healthy that I wouldn't have been too bad off, but it was the last thing I needed now.
I sometimes over-estimate my ability to deal with trouble like this, which then leads me to loosen my watch over my mind, and then I get a lickin' for that. One has to always guard the mind against repetitive thinking down certain tracks. If you ever think you don't need to do that, that you are 'over it' or 'strong' you are confusing the action of guarding your mind (or heart) with some property pertaining to 'you.' Actually, it is the guarding of the heart and not 'you' which is strong.

I definitely know how you feel about these sudden returns to sadness.

At least we know that the sadness changes just as fast as anything else. I always tell myself, in the midst of bad feelings, that soon I won't feel this way but some other way, and not to give how I feel at any one moment too much importance. Of course, this doesn't completely eliminate the problem, but helps.


alan k


Re: Venting...Round Two

melody on 12/17/99 at 00:00 (013850)

Sorry to hear that you are having such a bad time.

In respect of your son.....please please please be honest with him about why you feel the way you do. He will understand so much better if you tell him what is wrong rather than protect him from it all. I teach much younger children and if they are not told the truth they start to imagine the worst..after all as one of my 5 year olds told me everyone who is sick dies! I think a 10year old mind probably works in a similar way. Children are very resilient and can cope with far more than we think they can. This is also meant to be saying that I am sure he will be ok and I hope you will too!

Bye
Mel


Re: Venting...Round Two

vlj on 12/17/99 at 00:00 (013852)

Until I was crippled two years ago with pf I never truly understood the meaning of: 'That which does not kill me makes me grow stronger.' I am grateful to learn that I can cope with these losses and learn new ways to find joy, but there are days...
Don't try to protect your son. Being honest with him is the best gift you can give him and in talking with him he can talk back and find ways to feel he can be a part of your life, and maybe even help in small, sweet ways...and he will know the name of the scary monster that has crippled his father. 'Protecting him' is a burden to both of you.

Re: Venting...Round Two

Nancy S. on 12/17/99 at 00:00 (013854)

Alan, maybe I shouldn't have referred to my husband as an ex Buddhist. He was part of the 'official' organization in Boulder for many years. He left it ten years ago, but now goes once a week to a Tibetan Buddhist meditation group in Portland, and much Buddhist philosophy is still an integral part of his thinking. I have learned so much from him in his approach to life, and I attribute plenty of it to Buddhism. I'm glad it helps you too. Sorry about the fire and the pain it caused you! Yikes. Here's to no more of that -- Nancy S.

Re: Venting...Round Two

Elise M. on 12/17/99 at 00:00 (013865)

Hi Nancy,
It was nice to hear that you are from Maine as I too am from Maine. We just moved here in June, same time my PF set in. I question whether it was climate related or terrain related. Maybe you could share some insite with me on this topic. Would appreciate talking to you in detail. I am in aol instant messenger as LemLpn. You might want to try and catch me in there. Until I hear from you, feel better.
El.

Re: Venting...Round Two

Steve L on 12/18/99 at 00:00 (013879)

Elise, the vomiting is an all too regular occurance resulting from prolonged pain with little or no relief. As to how much of this is the result of the periferal emotional strain of PF, I cannot say with certainty. I only know that it strikes almost without warning and is not the result of excess anti-inflamatories, as they are no longer a part of my treatment.

Thanks for your concern,

Steve


Re: Venting...Round Two

Steve L on 12/18/99 at 00:00 (013880)

vlj, Melody, I appreciate your opinions and input. My sons have known this disease their entire lives, and please don't think that it is not a frequent and open topic for discussion amongst us. With that said, I do not retract my earlier comments regarding my desire to minimize PF's impact on their daily lives. I sincerely wish my problem was not their's, and that was the point of my post.(That and the desire for some anonymous whining!)

Wishing you a Joyous Holiday season,

Steve


Re: Venting...Round Two

vlj on 12/18/99 at 00:00 (013889)

My heart goes out to you Steve, and it sounds to me like you are a terrific dad...I send all the good thoughts and wishes I possibly can your way in hopes that one day...as soon as possible...you'll experience some relief for you and your family.



Re: Venting...Round Two -- to Elise

Nancy S. on 12/18/99 at 00:00 (013897)

Hi Elise -- Thanks for your responses to my messages on here. Hey, nice to find a fellow Mainiac! Welcome to Maine. I've been here 11 years, so I can't attribute my PF to climate or terrain, but have you been doing different activities since coming here in June? Or same activities on our famous rockier terrain? The terrain around my barn, which is not very smooth, did not help my condition, I'm sure, but it isn't related to Maine per se. You have written nice supportive messages to others on this board, I've noticed. You're a positive presence. I only have WebTV so I think can't access you where you mentioned. But if you'd like to email me, my address is:
(email removed)
Sounds like you're having a lot of good days mixed in with the bad. I'd like to hear your prior experiences in dealing with this thing. I've had a lousy podiatrist, and didn't figure that out till I first found this site, only about a week ago. So I'm trying a lot of things now that I never even heard of till I read Scott's site. So far so good, I'd say. I did have a really bad day after writing my positive treatise 3 or 4 days ago -- cried all day over having to cut back on my antiquing work. But I'm adjusting to the idea (the necessity) again. Hope you're having a less-pain day today. --Nancy S.

Re: Venting...Round Two

melody on 12/18/99 at 00:00 (013903)

Steve,
Anonymous whining is good for the soul!!!!!

I am a newcomer to the pain related to PF but have suffered with a rare wrist problem for years and years..... know a little bit about dealing with pain!!!*S* One thing my pain management manual suggests is that one should keep a 'bitchin' book!!! Just write down all those negative thoughs about how you feel. Research has shown that this really does help people with a chronoc pain problem. Also means you don't complain over and over to the people who will listen!!!!!

I wish you luck with your recovery and whine on here whenever you want to!!!

Mel