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Hey Robin, did you get well? Where are you?

Posted by Beverly on 5/13/00 at 13:34 (020339)

Robin,

I've noticed we have not heard from you in awhile. It seems like last time I read one of your post you were doing better. Do you feel well.. or at least almost better? If you have a success story, I'd love to hear it since like you, rest is my primary tool besides good shoes.

Give us a buzz,
Beverly


Re: I'm still here

Robin B. on 5/14/00 at 10:33 (020357)

Hi Beverly,

I'm still here -- thanks for asking -- although I don't post much anymore. Yes, I am doing a lot better. I have had PF for more than 2 years now -- and at one level, I think I will always have it. But I am TONS better than I used to be, and very grateful for it, too. In fact, I have resumed a fairly normal life -- although I do take great care of my feet, and I suspect I always will from now on.

Birkenstocks were (and are) the backbone of my recovery. Birks are all I wear now, and in fact, I am increasingly limiting myself to only leather varieties of Arizona and Florida models, which make my feet feel the best. I long ago gave up caring what people thought about my shoes. Now that I have found a shoe that works for me, I care even less if I don't look stylish or in vogue. My feet feel pretty good and that's what counts.

I also take bromelain. Lately I have been forgetting to take it in the middle of the day, and after about a week or so of this behavior, I can feel the difference. So -- I'm getting back to being religious about it. Also, I follow a fairly rigid low carb diet. I am probably the only person in the world to have not lost major weight with the Adkins diet -- but weight aside (and I wish it were), I feel incredibly better without a heavy carbohydrate diet. My feet feel the difference too, although it took a looooong time for the low carb effects to kick in.

I'm a big believer in rest. I rested my feet for eons (or so it seemed), doing only the bare necessities of life on my feet, and 'parking it' for the rest. Most of my exercise is via a bike now, although I do miss my marathon walks. But -- although I can walk 2-3 miles, I find I almost prefer biking. (I can also go shopping for 5-6 hours on my feet without subsequent pain -- and while that may not qualify as exercise, it sure is something I couldn't do last year at this time.)

There is not a day that passes that I don't thank God for my recovery. It is not yet a complete recovery -- but it's pretty darn close. I find I can do the activities that are important to me without being in pain, and that's what counts. Even though it's not a terribly 'serious' or terminal or life-threatening condition, I have never had anything put my life on hold the way PF did. I have never have a malady that ran my life, every second of it, the way PF did. I hope I never do again.

There IS hope for everyone. When I first found this board, people used to say that as they were in the throes of recovering and leaving. I wanted to believe them, but I was new, and the pain was agonizing -- and the despair and depression were pretty bad too. Now I have learned that they were right -- there IS hope. Whether it is shoes or stretching or casting or taping or PT or bromelain or surgery or a variety of other measures, there are so many things to try and so many different ways to approach PF.

One of the hardest parts for me, and I think for most of us, is the feeling that I was in it alone. No one around me understood the pain and 24-hour discomfort. People just thought my feet hurt, the way your feet hurt if you wear cheap shoes for a day. For many months, this board was my only solace. The experience has been a humbling one, and one that had made me far more conscious of other peoples' pain.

To me, patience is the key, even in the face of despair. Patience and a willigness to try yet another remedy, yet another treatment, because you just never know which one will be THE one. I wish everyone here a recovery that, at minimum, enables a return to normal life and normal activities. Many of us will have to accommdate PF by making changes in our lives -- but being able to HAVE relatively painfree lives is my wish for all. Being able to return to normalcy -- even at about 80%, which is where I think I am -- is absolutely wonderful.


Re: I'm still here

Nancy S. on 5/14/00 at 16:14 (020362)

Hi Robin. It's great to hear that you're still doing so well -- and writing eloquently about it. I think your posts about your recovery/ing must provide solace for many. They have for me, since I first found this board 8 months into PF.
I would put myself at about 60-65% on the recovery road at this point. It's only very recently that I felt I was truly on that road. Before, I would have a few good days and THINK I was on the road, and then fall back too far to be able to say that. But now, I have many more good days than bad, and now and then a totally pain-free one. I no longer panic when I have a not-so-good day, because I do feel I'm on that recovery road -- and I come out of a not great day within a day or two.
For a long time, when despair was pretty high in me, I think I was looking at recovery as an all-or-nothing thing. Now I realize it's a process, and every little gain feels huge to me. I've been a bit giddy about it lately, I think! (Maybe you could tell . . .) Most of what has helped you is helping me too. I can't pin down the bromelain as definitely part of it, but I've been taking it during this time of improvement, so I'm not about to stop.
I also agree with you completely about low carb. Although the yeast-killing diet, which is low carb, did get rid of the extra pounds from PF, I know I would stick with low carb even if I hadn't lost a pound. Like you, I feel SO much better not loaded down with that heavy food. I only miss it for tiny moments now and then, but the nostalgia passes quickly because it can't compare to how much better I feel overall. I sense that it has helped everything, physically and mentally, and so I can't help suspecting that it has helped the PF too. Why wouldn't it extend that far, after all!
I'm glad you read every day and post when someone needs you. --Nancy

Re: I'm still here

Steve P on 5/14/00 at 20:07 (020367)

Robin & Nancy --- Thank you both for your insightful comments. As one who is experiencing the good day / bad day pattern, I need all the encouragement I can get! I really appreciate your messages. They help put things into perspective. Thanks again.

Re: Nice Post Robin. Stay well! eom.

Kim B. on 5/14/00 at 20:51 (020368)

eom

Re: Steve P

Nancy S. on 5/14/00 at 22:56 (020373)

Hi Steve,
I do know the need for encouragement you're talking about, and I have found it here many times. As I recall, you've had PF for 2 or 3 months, yes? You've caught it early and are trying the best you can to take care of your feet -- you have every reason to feel encouraged. I didn't have ANY good days for 8 months, until I found this site. And then it was up and down (still plenty of downs for a while), but now the up days are increasing, and if you keep taking care of your feet I believe this will happen for you too. Some days it will seem like it's taking forever, but hang in there and your efforts will likely pay off. Best of luck to you --Nancy

Re: Robin, glad you're better. Stretching yet?

Beverly on 5/15/00 at 00:09 (020374)

Dear Robin,

I'm so glad you're doing well! It is very encouraging for me since as I recall at your worst you could barely get around. And I especially appreciate how you went into such detail on your recovery.

Like you, I am a great advocate of rest as my primary treatment. I have not tried Bromelain, but I am considering it. A couple of weeks ago, I started taking Vioxx. So far, my stomach is okay.

One thing I am wondering about, are you stretching yet? So far I'm in the 'no stretching' camp, but I still have mixed feelings about this.

How wonderful that you are in recovery. I can't remember if you ever used the night splints or wore a cast, but I'm curious about that too.

Beverly


Re: Steve P

Steve P on 5/15/00 at 09:49 (020393)

Nancy --- Yes indeed, I'm at 2 1/2 months, 1 1/2 since diagnosis. My onset was sudden, literally overnight. As you know so well, the mental side of PF is tough & I know I speak for many in thanking you & the other 'veterans' for your postings. They are really valuable & much appreciated.

Re: Steve P

Nancy S on 5/15/00 at 10:01 (020394)

I'm glad you feel that way, Steve, and thanks for expressing it.
The mental side of PF can be very, very tough -- people who have never had it sometimes have a hard time understanding that, but it's certainly real and I think needs to be addressed as much as the affliction itself. It's pretty difficult to move along with recovery and take control over one's treatment when one is paralyzed with depression.
I'm hoping that the toughness of the situation will ultimately make me a tougher person, in a good sort of way!
--Nancy

Re: Nope, no stretching

Robin B. on 5/15/00 at 17:48 (020411)

Well, Beverly, I guess I am the non-stretcher of this board. My recovery seems to be doing well without stretching, and although it works for the vast majority of people, I continue to do better without it.

No, I never tried casting. I did have my feet taped once by a physical therapist -- but I couldn't stand it. I have some 'unresolved conflict' with constraints such as taping my feet, so I only tried it for a couple of days and then threw in the towel. If I were going to try anything else, it might be a nightsplint. A nightsplint makes sense to me, logically. If I were in the modality-testing mindset, I might go that route.

The real key for PF for me is arch support. That's why I am such a Birks devotee. I wear them every waking moment, except for in the shower, although I do have arch-reinforced rubber shower shoes too.

Beverly, you are right -- there were indeed days in the last two years when I could barely get around. Often I made choices such as -- if I were to vacuum the carpet, then I wouldn't be able to do anything else on my feet that day. Ditto, grocery shopping. Ditto washing the car. A 20-minute or 30-minute activity might be 'it' for the day for me. Going to art shows or craft fairs was out. Going to a museum was out. Walking the mall was out. And just because I was sitting on my butt, it didn't mean my feet didn't hurt. They DID hurt, every waking minute.

I am a believer in whatever works for the individual. To experience the lessening and sometimes even absence of pain is magnificent -- so for each of us, how we get there isn't the issue. THAT we get there is the issue. I hope everyone gets there in whatever way works for each person. Keep hanging in there and trying whatever your logic and spirit say might be a viable option for you. Sometimes it's really hard to keep your chin up in the face of PF -- but if I can recover from bilateral PF and 24-hour pain, then I honestly believe recovery can happen for everyone.


Re: I'm still here

Robin B. on 5/14/00 at 10:33 (020357)

Hi Beverly,

I'm still here -- thanks for asking -- although I don't post much anymore. Yes, I am doing a lot better. I have had PF for more than 2 years now -- and at one level, I think I will always have it. But I am TONS better than I used to be, and very grateful for it, too. In fact, I have resumed a fairly normal life -- although I do take great care of my feet, and I suspect I always will from now on.

Birkenstocks were (and are) the backbone of my recovery. Birks are all I wear now, and in fact, I am increasingly limiting myself to only leather varieties of Arizona and Florida models, which make my feet feel the best. I long ago gave up caring what people thought about my shoes. Now that I have found a shoe that works for me, I care even less if I don't look stylish or in vogue. My feet feel pretty good and that's what counts.

I also take bromelain. Lately I have been forgetting to take it in the middle of the day, and after about a week or so of this behavior, I can feel the difference. So -- I'm getting back to being religious about it. Also, I follow a fairly rigid low carb diet. I am probably the only person in the world to have not lost major weight with the Adkins diet -- but weight aside (and I wish it were), I feel incredibly better without a heavy carbohydrate diet. My feet feel the difference too, although it took a looooong time for the low carb effects to kick in.

I'm a big believer in rest. I rested my feet for eons (or so it seemed), doing only the bare necessities of life on my feet, and 'parking it' for the rest. Most of my exercise is via a bike now, although I do miss my marathon walks. But -- although I can walk 2-3 miles, I find I almost prefer biking. (I can also go shopping for 5-6 hours on my feet without subsequent pain -- and while that may not qualify as exercise, it sure is something I couldn't do last year at this time.)

There is not a day that passes that I don't thank God for my recovery. It is not yet a complete recovery -- but it's pretty darn close. I find I can do the activities that are important to me without being in pain, and that's what counts. Even though it's not a terribly 'serious' or terminal or life-threatening condition, I have never had anything put my life on hold the way PF did. I have never have a malady that ran my life, every second of it, the way PF did. I hope I never do again.

There IS hope for everyone. When I first found this board, people used to say that as they were in the throes of recovering and leaving. I wanted to believe them, but I was new, and the pain was agonizing -- and the despair and depression were pretty bad too. Now I have learned that they were right -- there IS hope. Whether it is shoes or stretching or casting or taping or PT or bromelain or surgery or a variety of other measures, there are so many things to try and so many different ways to approach PF.

One of the hardest parts for me, and I think for most of us, is the feeling that I was in it alone. No one around me understood the pain and 24-hour discomfort. People just thought my feet hurt, the way your feet hurt if you wear cheap shoes for a day. For many months, this board was my only solace. The experience has been a humbling one, and one that had made me far more conscious of other peoples' pain.

To me, patience is the key, even in the face of despair. Patience and a willigness to try yet another remedy, yet another treatment, because you just never know which one will be THE one. I wish everyone here a recovery that, at minimum, enables a return to normal life and normal activities. Many of us will have to accommdate PF by making changes in our lives -- but being able to HAVE relatively painfree lives is my wish for all. Being able to return to normalcy -- even at about 80%, which is where I think I am -- is absolutely wonderful.


Re: I'm still here

Nancy S. on 5/14/00 at 16:14 (020362)

Hi Robin. It's great to hear that you're still doing so well -- and writing eloquently about it. I think your posts about your recovery/ing must provide solace for many. They have for me, since I first found this board 8 months into PF.
I would put myself at about 60-65% on the recovery road at this point. It's only very recently that I felt I was truly on that road. Before, I would have a few good days and THINK I was on the road, and then fall back too far to be able to say that. But now, I have many more good days than bad, and now and then a totally pain-free one. I no longer panic when I have a not-so-good day, because I do feel I'm on that recovery road -- and I come out of a not great day within a day or two.
For a long time, when despair was pretty high in me, I think I was looking at recovery as an all-or-nothing thing. Now I realize it's a process, and every little gain feels huge to me. I've been a bit giddy about it lately, I think! (Maybe you could tell . . .) Most of what has helped you is helping me too. I can't pin down the bromelain as definitely part of it, but I've been taking it during this time of improvement, so I'm not about to stop.
I also agree with you completely about low carb. Although the yeast-killing diet, which is low carb, did get rid of the extra pounds from PF, I know I would stick with low carb even if I hadn't lost a pound. Like you, I feel SO much better not loaded down with that heavy food. I only miss it for tiny moments now and then, but the nostalgia passes quickly because it can't compare to how much better I feel overall. I sense that it has helped everything, physically and mentally, and so I can't help suspecting that it has helped the PF too. Why wouldn't it extend that far, after all!
I'm glad you read every day and post when someone needs you. --Nancy

Re: I'm still here

Steve P on 5/14/00 at 20:07 (020367)

Robin & Nancy --- Thank you both for your insightful comments. As one who is experiencing the good day / bad day pattern, I need all the encouragement I can get! I really appreciate your messages. They help put things into perspective. Thanks again.

Re: Nice Post Robin. Stay well! eom.

Kim B. on 5/14/00 at 20:51 (020368)

eom

Re: Steve P

Nancy S. on 5/14/00 at 22:56 (020373)

Hi Steve,
I do know the need for encouragement you're talking about, and I have found it here many times. As I recall, you've had PF for 2 or 3 months, yes? You've caught it early and are trying the best you can to take care of your feet -- you have every reason to feel encouraged. I didn't have ANY good days for 8 months, until I found this site. And then it was up and down (still plenty of downs for a while), but now the up days are increasing, and if you keep taking care of your feet I believe this will happen for you too. Some days it will seem like it's taking forever, but hang in there and your efforts will likely pay off. Best of luck to you --Nancy

Re: Robin, glad you're better. Stretching yet?

Beverly on 5/15/00 at 00:09 (020374)

Dear Robin,

I'm so glad you're doing well! It is very encouraging for me since as I recall at your worst you could barely get around. And I especially appreciate how you went into such detail on your recovery.

Like you, I am a great advocate of rest as my primary treatment. I have not tried Bromelain, but I am considering it. A couple of weeks ago, I started taking Vioxx. So far, my stomach is okay.

One thing I am wondering about, are you stretching yet? So far I'm in the 'no stretching' camp, but I still have mixed feelings about this.

How wonderful that you are in recovery. I can't remember if you ever used the night splints or wore a cast, but I'm curious about that too.

Beverly


Re: Steve P

Steve P on 5/15/00 at 09:49 (020393)

Nancy --- Yes indeed, I'm at 2 1/2 months, 1 1/2 since diagnosis. My onset was sudden, literally overnight. As you know so well, the mental side of PF is tough & I know I speak for many in thanking you & the other 'veterans' for your postings. They are really valuable & much appreciated.

Re: Steve P

Nancy S on 5/15/00 at 10:01 (020394)

I'm glad you feel that way, Steve, and thanks for expressing it.
The mental side of PF can be very, very tough -- people who have never had it sometimes have a hard time understanding that, but it's certainly real and I think needs to be addressed as much as the affliction itself. It's pretty difficult to move along with recovery and take control over one's treatment when one is paralyzed with depression.
I'm hoping that the toughness of the situation will ultimately make me a tougher person, in a good sort of way!
--Nancy

Re: Nope, no stretching

Robin B. on 5/15/00 at 17:48 (020411)

Well, Beverly, I guess I am the non-stretcher of this board. My recovery seems to be doing well without stretching, and although it works for the vast majority of people, I continue to do better without it.

No, I never tried casting. I did have my feet taped once by a physical therapist -- but I couldn't stand it. I have some 'unresolved conflict' with constraints such as taping my feet, so I only tried it for a couple of days and then threw in the towel. If I were going to try anything else, it might be a nightsplint. A nightsplint makes sense to me, logically. If I were in the modality-testing mindset, I might go that route.

The real key for PF for me is arch support. That's why I am such a Birks devotee. I wear them every waking moment, except for in the shower, although I do have arch-reinforced rubber shower shoes too.

Beverly, you are right -- there were indeed days in the last two years when I could barely get around. Often I made choices such as -- if I were to vacuum the carpet, then I wouldn't be able to do anything else on my feet that day. Ditto, grocery shopping. Ditto washing the car. A 20-minute or 30-minute activity might be 'it' for the day for me. Going to art shows or craft fairs was out. Going to a museum was out. Walking the mall was out. And just because I was sitting on my butt, it didn't mean my feet didn't hurt. They DID hurt, every waking minute.

I am a believer in whatever works for the individual. To experience the lessening and sometimes even absence of pain is magnificent -- so for each of us, how we get there isn't the issue. THAT we get there is the issue. I hope everyone gets there in whatever way works for each person. Keep hanging in there and trying whatever your logic and spirit say might be a viable option for you. Sometimes it's really hard to keep your chin up in the face of PF -- but if I can recover from bilateral PF and 24-hour pain, then I honestly believe recovery can happen for everyone.