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The nature of the site

Posted by Dorothy on 2/23/04 at 16:18 (145114)

I want to say something that has been on my mind for a little while about this site and about recent comments about this site that repeat previously made comments. From time to time it is said, in one way or another, that people who have ' been cured....had successful this or that...gotten better...' do not come to this site anymore. These people, supposedly, are now all out running, walking, going to malls - and all of the variations on the imagined activities that these 'healed' ones engage in. Variations on that theme say, in various ways, that the people who come to this site essentially are without hope of improvement or progress or cure. I can't put my finger on it, but somehow it is a denigrating, grim opinion that categorizes and dismisses all at the same time. I always have a negative reaction whenever I read it, first of all, and, secondly, it is simply not true.
This site serves many people in many stages and at many points along the continuum of foot problems, from despair to well, for a long time. It also encompasses people who have good days/weeks/months/years and then setbacks. It serves as a touchstone, a continuing education source, and a well for understanding. It also provides for a kind of 'mentor' to help others who are in early stages, or despondent stages or frightened stages, of problems. It aggravates me greatly whenever I read the false characterization of this site as a sort of 'trash heap of unfortunates' and I think it is an attitude that should be rejected. Even those among us who have a very long and painful history with these problems are among the most remarkable and courageous people who continue to learn and share and grow, even through pain and loss. The fact is there are many wonderful posters here who are, for all intents and purposes, well, yet they continue to maintain old relationships here, form new ones, teach others and, one presumes, continue to learn themselves. It's a lovely (for the most part, with a few ugly exceptions) little foot-bridge, pardon the pun.
I hope, for example, that when Ed Davis sends his patients here to read about the perils and pitfalls of surgery (good for him!), that he also sends patients here for examples of gutsiness and drive in the face of pain and, often, horrendous obstacles. THAT, to me, is the real story here - all the people who don't give up and who find ways to live their lives.

Re: The nature of the site

Julie on 2/23/04 at 17:07 (145116)

Absolutely right, Dorothy, and you put it very cogently. I have always felt as you do, that this is a terribly misleading and off-putting way of regarding what happens here.

Re: The nature of the site

Pauline on 2/23/04 at 17:34 (145118)

You know I never thought about the subject you bring to light in your post until today. For me, it's an eye opening observation and one that will now come to mind each and every time I read a post.

You're certainly correct. We are not all hard core failed P.F. cure attempts. We are certainly at different stages in our dealing with this condition, some beginning, some cured and some long term suffers.

We do our best to encourage each other, shed hope, educate and cry together. We try to feel each others pain whether it be because of a P.F. set back, new case of P.F, or another one of life's trials tossed in our direction, breast cancer, miscarrage, bladder cancer, loss of a loved one. You know we've seen and read a lot over the years. We also took time to laugh together too and hand out hugs for birthdays, engagements and gave thanks for good test results, or a child coming home.

Glad you voiced your opinion and posted this observation. I think it will help us grow in a good direction.

Re: The nature of the site

Dr. Z on 2/23/04 at 17:54 (145120)

Very good point. People meet others and work together to help each other. The tough stay and don't give up.

Re: The nature of the site

Sher A on 2/23/04 at 19:51 (145125)

You're right.. I for one haven't been too active here lately, although I stop in and read the posts often. I've given up. I've been told now that it's pain or surgery - no surgery then no help for pain. After having tried everything, I don't believe that PF EVER goes away and I feel that there is no cure. I've read all the posts about people like me, who have tried everything, but surgery. A positive attitude is living a lie because the pain is still there constantly. I felt shunned and ridiculed once because I mentioned that money was a big object in trying ESWT. That's another reason for my silence. Not only that, but I haven't seen enough people praising it to even give me the feeling that it _could_ work. I do find solace in the absolute care and feeling that goes out to others in here. I remain in the hopes that one day there will be an actual cure without all the bs of try this try that, or cutting. I'm learning that pain is my constant companion now and just try to deny it and press on. It's just kind of hard to try to give hope to others when I don't have any myself.

Re: The nature of the site Agree with Sher A

Bud on 2/23/04 at 22:46 (145141)

I've only been reading this site for about 20 months. I also feel that sometimes if I say it cost too much or this didn't work ,some people take it wrong. Now that I feel I'm on my way to recovery and I express my happiness that surgery was a success for me or I suggest surgery for anyone. There is always someone that is quick to snap we're not all as lucky as you or make me feel like I shouldn't be advising surgery because of all the terrible things that can happen. The way I look at it or the way I felt is it couldn't get much worse. If I can save someone the money or the pain by skipping some of the treatments I went through,I'm happy I could. I all most let somone talk me out of the surgery or scare me out of it,I'm glad now I had it done. I was tired of the stretches, the yoga the PT the night splint Etc.Maybe some of the people that got better from surgery or night splint felt like I do sometimes and just decided it wasn't worth the hassle. I'll be around for a long time and hopefully all I'll have to complain about is how good my feet feel. Thanks I feel better already.


Re: You are a talented writer, Dorothy

Pam S. on 2/23/04 at 23:55 (145154)

I am always impressed by your posts. I hope I have learned to express myself better from reading many posts from the past not just from Dorothy but from others as well. Many of you have such a great way of expressing yourselves. I have learned from all of you.

I think it is very tricky giving poeple advice when some of us,myself included, have not had such good luck. I would never want to TALK someone out of having a needed procedure. I often just do not post at all for fear I will SAY the wrong thing. BUT sometimes when I read how little people know about surgeries or procedures and they are getting ready to do it THE NEXT DAY or something like that I just cannot help but explain how I did the same thing and the mistakes I made.

Once again its late and I may not make any sense....night all pam

Re: You are a talented writer, Dorothy

Dorothy on 2/24/04 at 02:01 (145157)

Pam ~ I am very touched by your words. You express yourself wonderfully (and not just because you said a nice thing to me :-) )
This place (this site) that we all visit together does so many things for each of us, and maybe one of the things is to help us be less afraid - of whatever it is we're afraid of, whether it's pain or speaking to others about our experiences or of being judged by others. Your words are very kind.
Best wishes ~

Re: The nature of the site

patty t on 2/26/04 at 14:35 (145440)

Hi...I stumbled on this site while looking for my doc's phone number..I dont know if i belong here or even where this will go...or if i will be able to find it again (LOL) but I wanted to put some input here, if its ok...I have tried everything they threw at me too...except surgery..(time off from work is not really an option to me)..I did the shots, the wraps, the orthodics...and just last week, the shock therapy thing...I am in the restaurant business so I walk on a cement floor all day..Its gotten pretty bad..I really am at my wits end, which is why I spent the money (insurance wont cover it) for the eswt..First week, no difference...He says it takes time so I am waiting , but in the meantime, i have to take painpills to get me through the day..Pretty bad..but I have my fingers crossed that the end result is something i can write about...Truth is, I am already down about 3000 dollars with nothing to show for it...but hope springs eternal...

Re: The nature of the site

Julie on 2/26/04 at 16:31 (145455)

Patty, you really should be resting for awhile after ESWT. Have you not taken any time off? Please try to arrange some - it would be a pity to have spent all that money just to undo the possible good effects of the treatment.

Walking on cement floors is about the worst possible thing for PF, and one of its most common causes.

Re: The nature of the site

patty t on 2/26/04 at 20:47 (145474)

I keep reminding the doc what I do for a living and he says it's ok to work

Re: The nature of the site

Julie on 2/27/04 at 01:58 (145491)

Patty, are you saying that your doctor believes it is all right for you to be on your feet on cement floors all day with PF, and shortly after ESWT treatment?

We have had many people over the years whose PF was caused by work that requires standing all day, especially on hard floors, and there is nothing worse than cement. It is an extremely common cause of PF. Furthermore it is extremely difficult to get rid of PF if the person continues to work in that way. Several people have realised eventually that they had change their occupation, and I know of at least one regular poster who worked through the pain and finally had to give up work altogether and is living on disability.

I am sorry to alarm you, but I really think that if you want your PF to be a thing of the past, you will probably need to make some changes in your life style.

What painkillers are you taking? We have been told here that it is best not to take anti-inflammatory medicines for a period (how long is a matter of debate) after ESWT. This is because ESWT sets up an inflammatory response that kickstarts the healing process, and anti-inflammatories such as Ibuprofen can hinder it.

Re: inflammatory and pain pills after eswt....for Julie...

patty t on 2/27/04 at 22:45 (145555)

Yep...I told him quite a few times that I work at a restaurant with a cement floor and that I put miles on my feet in the course of a day,and asked him if it was ok, and he said yes.. As far as the inflamatory medicine and the pain pills...I was taking Lodine?..(that was my stupid idea but I will stop that now)..The pain pills are Hydrocodeine?? I told the doc and he said he would give me one that had a pain pill and an inflammatory all in one