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Is Anyone Having a Good Week, Please Tell Us about It

Posted by salina on 10/10/00 at 17:45 (030203)

Hi To All,
I am so upset about what Laurie R. is going through, and Beverly, and everyone else going through a trying time right now.
I, too, am feeling like this is becoming insurmountable (is that a word?)
This week feels like a long uphill climb that I am not prepared to make.
I go back to my pod on Thursday, but I'm not sure why. What I mean is, I can either get another shot, or just say, 'Oh, my feet still hurt', hi and bye. This is just so old and repetitive to me now.
I guess its good news that my husband promised me he can take leave from work in November, so I can get a cast on my right foot.
I plan on sitting on the couch resting BOTH feet for a few weeks. I dont care if the man serves me a ham sandwich every night, as long as I don't have to get it myself. I am wore out from taking care of my family and dealing with this PF day in and day out.
If someone is having a really good week, please share it.
I think it will help me, and maybe others, get out of the doldrums.
I keep crying for no reason, and its scaring my husband, he thought I was pregnant again. Umm...Not gonna happen.
You are all in my thoughts and prayers. One of my boys who sometimes sees me reading or posting to the board, asked me if I wanted him to pray for yall as he prays for me. This both warmed and broke my heart, cause I never knew he was praying for me each night. I'm glad he is such a sweet and thoughtful child, but it reminded me how much this affects him too.
Oh, by the way, I did answer 'yes' to his question.

Re: Is Anyone Having a Good Week -- no, I'm sorry

Nancy S. on 10/10/00 at 18:33 (030212)

Hi Salina, I hear you, and there are weeks when I can post a good response to a question like yours but this isn't one of them. So I'm writing mostly to sympathize and empathize. I hear a 'I'm so tired of it all' throughout your post, and that's how I'm feeling -- so I'm glad you asked your question and hope there are responses better than mine! I will benefit too.
I've had steps of improvement, but it's 1.5 years now with PF and then tendonitis. And for some reason this week my mental outlook has taken a nosedive. I keep getting glimpses in my mind of what life was like Before -- how active it was, and able to do simple things, never mind big challenging things -- flying around happily, working hard, visiting with the real characters involved in my work, with no obstacles at all. And I can see that life in my head (though it's growing dimmer), but I can't remember what it felt like anymore. I and my life are so s l o w now, so lowkey, everything measured and careful and with constant fear of making something worse.
This weekend we're having a giant barn sale to sell all my antiques and other old stuff. So it's a big goodbye to a life I loved, and I feel heartbroken. Maybe I'll be able to start over again someday. But I can't spend another winter, like last, waiting to pick it up again at any moment and watch it not happen. I did a crummy job this year and can't keep trying at something that I can't do justice to and sets my feet back.
It's wonderful that your husband will take time off next month and give you a real rest. You really deserve it and I bet it will help you, so hang on to that thought. And thank you for your son's prayers -- what a sweet boy!
All the best to you, Salina, from Nancy

Re: My "Silent Retreat" Weekend, a few weeks ago.

Kim B. on 10/10/00 at 18:47 (030219)

Salina, Bev and Laurie and everyone, maybe this will be of help to some of you.

Posting it will probably jinx it, but this week has acctually been better for me and my feet. Of course, from where I was a few weeks ago, I could only go up. I think I am doing better at them moment because after the ER Neck/out of control situation a couple of weeks ago, my doc made some changes in the medications for my Fibromyagia, (FM) and my feet are getting a 'trickle down' sort of benefit form it.

A few weeks ago, I was in the bathtub, crying. I had the loud jaccuzzi jets on, and didn't think anyone would hear me, so I was boo-hooing all over the place (again), I just had to let it out. My husband came in, (Yes Salina, he had 'that look' too.) I told him I was at the end of my rope with all the pain, fustration, doctor visits, and medications, all while trying to be a good parent to a little boy.

Anyway, long story short, he and I soon arranged for me to go on a 3 day/night 'silent retreat' at a nearby (40 miles) 'Jesuit Retreat House'. From what I understand, they have these all over the world.

I knew very little about it, or what to expect, just that they would feed me and I could rest. No talking, No phone, no TVs, nothing except some prayer conferences, that I could either skip or attend. It was just a twin bed, private bath and lots of rest and prayer time. (3.5 days anyway.) I remember telling my husband, I don't care if they just shove a plate of rice under the door, I just couldn't take much more of my 'normal' life.

I am not a Cathlolic, but it was a women's weekend silent retreat open to all person's of all religious faiths (though most of them seemed to be catholic, btw).

The cost or fee is based on your ability to make a donation. Some can afford more, some can afford less, that kind of thing. Because of my state of mind, it was the safest place for me to spend a few days, alone, but not alone. Though I hated leaving my little boy, I was no good to him the way I was.

I took a wide mouth ice bag, cause they have an ice machine for the retreatants. I nursed my feet and other achey muscles. I read, napped, reflected, and attended many of the 'prayer conferences.' They fed me very GOOD nutritious food and they had plenty of snacks and beverages on hand for us. I even took along some M&Ms and snacks incase the food was horrible. But it was delicious, and well balanced meals.

I came back with renewed hope and a little more will power to keep trying to do what I have to do. A week later, I STILL ended up in the ER because of my Neck spasams and FM, but it was probably because I had pushed and pushed myself until I was at the breaking point anyway, and nothing could have prevented the train wreck that was ahead. I had literally become exhausted by the PF and FM battles of my life. I wish I hadn't waited so long to take controll of the situation, given in to my human limitations and spritual needs.

So check your yellow pages for Retreats. We have to take the time to nurse ourselves and rest, body, mind and soul. I wish you the best and Salina, thanks for telling me about your little boy's compassion for us. It warms my heart. There ARE so many good people in the world, and he is well on his way to being one of them.

Regards, Kim B.

Re: Is Anyone Having a Good Week -- no, I'm sorry

Laurie R on 10/10/00 at 18:57 (030220)

Hi Salina,
First of all, please give your son a big hug from me. What an angel .I will say when a child says that it just makes my day God bless him. I wish I had something good to say ,well i guess i do . I do feel better that I took the tour .But I am not going to lie .I am still scared. Why ? I have no clue. I know they are not going to hurt me.I think it is just everything. My foot has gone down hill ever since the cast came off last Friday.I went to PT today and my therapist thinks that I already have nerve damage (that's one reason why my Pod wants me to have the MRI) . The sad thing is I think he is right. There is just so much going on in my family right now not only with me. It all is just very sad. Here is one thing that has me very upset. My older brother is 40 ,he was in the hospital all day yesterday getting a liver biopsy .He has Hep A Hep B and Hep C ,yse all three . I feel so bad for him . He lives alone and I have been talking to him alot trying to make him feel better . There is alot more but I think I have complained enough for one day .May God bless all of you and thank you for listening.

Also my heart goes out to Nancy S . I am so sorry that this has made you give up your work you truly love so much.

And Beverly my heart also goes out to you . You are such a kind lady and I am so sorry you also are going through such a hard time. I am here for anyone that needs me.You all have been so wonderful to me .I appreciate all of you......Thank you and God Bless ,Laurie R

Re: My "Silent Retreat" Weekend, a few weeks ago. Re Kim

Laurie R on 10/10/00 at 19:04 (030222)

Hi Kim,
Thank you so much for your post.Wow, I am so glad you got to go and do that for your self. I think you have a wonderful husband too. Thank for your kindness and for thinking of me while you are also going through pain. We are all very lucky to have each other . Thank you again Kim. My very best to you .I hope you continue to feel better . You have the right attitude .Laurie R

Re: Is Anyone Having a Good Week, Please Tell Us about It

Barbara TX on 10/10/00 at 23:40 (030257)

Hey - I'm having a pretty good week, and I'll step up to the plate and tell you about it, because next week I'll be balling to y'all to tell ME a happy story. My foot still hurts, but I am managing not to be in too much pain while sitting or doing light walking from room to room Here is the week: I finally got the guts up to be seen in my bathing suit with all the beautiful people swimming laps at the local college. I swam for 40 minutes in FREEZING water. Hoo-ray for my motivation! I was the slowest one in the pool, but its a miracle that I could get there. I walked very slowly, but I got there. I also am finally sleeping better (without my evil nightsplint). I bought a pair of Birk Boston clogs that I like. I bought a toaster, also through the internet. My son's homeschooling supplies arrived and we are busy with that - so, lots of kindergarten things to play with. I am also happy that eswt is on my list of things to do, so I have a little more hope than usual. AND, I am trying to be happy in the moment, whether or not my feet comply - that is the hardest thing of all. There are still days when I just can't walk. My son rolls my office chair into the bedroom and we start from there, and I live my day on the chair or scooting around on the floor. But this is not every day. I used to cry ALL THE TIME and EVERY DAY. I am taking an antidepressant for this, and it has helped greatly. You might consider that as well.

Salina - your son is a sweetie, and your feet are teaching him to be a compassionate, loving person. I know that you hate you feet right now, but thank them for that! Sometimes it is so overwhelming, caring for a family with this thing. It is heartbreaking to lose your former way of life, but it is depression that tells you that this is forever- all the foot folks here have such positive stories at times. I cling to those, and I hope that you will too. Tell your son that we all love and need his prayers! Thanks! B.

Re: Having a Very Good Week!

Susan S on 10/11/00 at 07:43 (030268)

Me! Me! I took another injection 3 weeks ago and have had wonderful results. I've even work pretty shoes a time or two. Now before you get worked up, I am still being very careful and still stretching and splinting and doing all the things I feel like will be a part of my lifestyle for the rest of my life. But it really is wonderful to be thinking of maintenace rather than cure.
It is interesting to me the difference in the injection from one doctor to another. I'll remind you that origionally I saw a pod who was the devil, who gouged my foot and my insurance. I switched to a ortho who's last resort was the injections. I asked him at the last visit if this was just something that I was going to have to live with and he immediately told me NO and said his theory is that recovery is relative to the time you have had PF before you found the treatment that worked for you. And that the treatment that works for some does not work for others. (just a little justification for us all)
Salina, I know it's tough. My baby is a teen and it is had been hard on him at times. My heart goes out to all of you with small children. But look up! I played football in the yard Sunday afternoon and ran for passes and everything!
Kim, I leave tomorrow for my own little retreat from the world. Unfortunately, my husband is going with me but our schedule is for some serious R & R. After hearing your story there is a retreat not too far from here that I think I'll contact after the holidays when I'll need it the most!
x

Re: Having a Very Good Week!

Cynthia on 10/11/00 at 09:46 (030275)

I'm happy to report that I, too, had actually TWO good weeks after three years of suffering from hs and pf.
I think what did it for me was a new pod who was more aggressive than the first. I got shots in both feet, new
orthotics, the night splints (very helpful) and stretch A LOT, feet and calves and hamstrings. However, being an avid
tennis player, I feel the pain returning and slowing worsening. I'll probably get more shots next week, they must be
wearing off. But I was so happy not to take 9 Advils every day for two whole weeks! Is there hope? PS - he also approved a handicap parking pass which I only use when I am in pain and really need it, maybe this will help others,
too. And using a (gulp) wheelchair at Disneyworld was the only way I could go with my kids.

Re: Having a Very Good Week!

salina on 10/11/00 at 13:55 (030293)

Hey you guys. It does sound like some of us are on the upswing these days. Good to hear.
I am feeling much more positive today.
A retreat sounds like heaven to me right now. But just getting a cast and getting some relaxation that way will have to suffice for the time being.
I have seriously thought about hopping to one of the other islands and getting lost for a few days.
My birthday is coming up, and I told hubby all I want is to go spend the day by myself. I don't know if I'll go to the beach, or pool, or shopping (NOT!!). Oh yeah, and I will definately try out one of the restaurants we can't afford to go to with the kids. Don't worry, I don't have any hang ups about eating alone in restaurants like some people do. Won't bother me at all. Oh, Oh, and a movie. A movie that WAS NOT made by Disney. Thanks guys, I am plumb giddy about my birthday NOW. I think I have listed at least four things I will enjoy doing that don't involve hurting my feet.
So many of you are going through much more than I could imagine. And giving up things that you love to do. My heart goes out to everyone.
x

Re: Having a Very Good Week!

Scott R on 10/11/00 at 20:04 (030326)

Cynthia,
Which night splint are you using that you said is 'very helpful'?

Re: Who is this Scott R. guy that posts sometimes?

Kim B. on 10/11/00 at 21:37 (030340)

Just wondering.

Re: Is Anyone Having a Good Week -- no, I'm sorry

Nancy S. on 10/10/00 at 18:33 (030212)

Hi Salina, I hear you, and there are weeks when I can post a good response to a question like yours but this isn't one of them. So I'm writing mostly to sympathize and empathize. I hear a 'I'm so tired of it all' throughout your post, and that's how I'm feeling -- so I'm glad you asked your question and hope there are responses better than mine! I will benefit too.
I've had steps of improvement, but it's 1.5 years now with PF and then tendonitis. And for some reason this week my mental outlook has taken a nosedive. I keep getting glimpses in my mind of what life was like Before -- how active it was, and able to do simple things, never mind big challenging things -- flying around happily, working hard, visiting with the real characters involved in my work, with no obstacles at all. And I can see that life in my head (though it's growing dimmer), but I can't remember what it felt like anymore. I and my life are so s l o w now, so lowkey, everything measured and careful and with constant fear of making something worse.
This weekend we're having a giant barn sale to sell all my antiques and other old stuff. So it's a big goodbye to a life I loved, and I feel heartbroken. Maybe I'll be able to start over again someday. But I can't spend another winter, like last, waiting to pick it up again at any moment and watch it not happen. I did a crummy job this year and can't keep trying at something that I can't do justice to and sets my feet back.
It's wonderful that your husband will take time off next month and give you a real rest. You really deserve it and I bet it will help you, so hang on to that thought. And thank you for your son's prayers -- what a sweet boy!
All the best to you, Salina, from Nancy

Re: My "Silent Retreat" Weekend, a few weeks ago.

Kim B. on 10/10/00 at 18:47 (030219)

Salina, Bev and Laurie and everyone, maybe this will be of help to some of you.

Posting it will probably jinx it, but this week has acctually been better for me and my feet. Of course, from where I was a few weeks ago, I could only go up. I think I am doing better at them moment because after the ER Neck/out of control situation a couple of weeks ago, my doc made some changes in the medications for my Fibromyagia, (FM) and my feet are getting a 'trickle down' sort of benefit form it.

A few weeks ago, I was in the bathtub, crying. I had the loud jaccuzzi jets on, and didn't think anyone would hear me, so I was boo-hooing all over the place (again), I just had to let it out. My husband came in, (Yes Salina, he had 'that look' too.) I told him I was at the end of my rope with all the pain, fustration, doctor visits, and medications, all while trying to be a good parent to a little boy.

Anyway, long story short, he and I soon arranged for me to go on a 3 day/night 'silent retreat' at a nearby (40 miles) 'Jesuit Retreat House'. From what I understand, they have these all over the world.

I knew very little about it, or what to expect, just that they would feed me and I could rest. No talking, No phone, no TVs, nothing except some prayer conferences, that I could either skip or attend. It was just a twin bed, private bath and lots of rest and prayer time. (3.5 days anyway.) I remember telling my husband, I don't care if they just shove a plate of rice under the door, I just couldn't take much more of my 'normal' life.

I am not a Cathlolic, but it was a women's weekend silent retreat open to all person's of all religious faiths (though most of them seemed to be catholic, btw).

The cost or fee is based on your ability to make a donation. Some can afford more, some can afford less, that kind of thing. Because of my state of mind, it was the safest place for me to spend a few days, alone, but not alone. Though I hated leaving my little boy, I was no good to him the way I was.

I took a wide mouth ice bag, cause they have an ice machine for the retreatants. I nursed my feet and other achey muscles. I read, napped, reflected, and attended many of the 'prayer conferences.' They fed me very GOOD nutritious food and they had plenty of snacks and beverages on hand for us. I even took along some M&Ms and snacks incase the food was horrible. But it was delicious, and well balanced meals.

I came back with renewed hope and a little more will power to keep trying to do what I have to do. A week later, I STILL ended up in the ER because of my Neck spasams and FM, but it was probably because I had pushed and pushed myself until I was at the breaking point anyway, and nothing could have prevented the train wreck that was ahead. I had literally become exhausted by the PF and FM battles of my life. I wish I hadn't waited so long to take controll of the situation, given in to my human limitations and spritual needs.

So check your yellow pages for Retreats. We have to take the time to nurse ourselves and rest, body, mind and soul. I wish you the best and Salina, thanks for telling me about your little boy's compassion for us. It warms my heart. There ARE so many good people in the world, and he is well on his way to being one of them.

Regards, Kim B.

Re: Is Anyone Having a Good Week -- no, I'm sorry

Laurie R on 10/10/00 at 18:57 (030220)

Hi Salina,
First of all, please give your son a big hug from me. What an angel .I will say when a child says that it just makes my day God bless him. I wish I had something good to say ,well i guess i do . I do feel better that I took the tour .But I am not going to lie .I am still scared. Why ? I have no clue. I know they are not going to hurt me.I think it is just everything. My foot has gone down hill ever since the cast came off last Friday.I went to PT today and my therapist thinks that I already have nerve damage (that's one reason why my Pod wants me to have the MRI) . The sad thing is I think he is right. There is just so much going on in my family right now not only with me. It all is just very sad. Here is one thing that has me very upset. My older brother is 40 ,he was in the hospital all day yesterday getting a liver biopsy .He has Hep A Hep B and Hep C ,yse all three . I feel so bad for him . He lives alone and I have been talking to him alot trying to make him feel better . There is alot more but I think I have complained enough for one day .May God bless all of you and thank you for listening.

Also my heart goes out to Nancy S . I am so sorry that this has made you give up your work you truly love so much.

And Beverly my heart also goes out to you . You are such a kind lady and I am so sorry you also are going through such a hard time. I am here for anyone that needs me.You all have been so wonderful to me .I appreciate all of you......Thank you and God Bless ,Laurie R

Re: My "Silent Retreat" Weekend, a few weeks ago. Re Kim

Laurie R on 10/10/00 at 19:04 (030222)

Hi Kim,
Thank you so much for your post.Wow, I am so glad you got to go and do that for your self. I think you have a wonderful husband too. Thank for your kindness and for thinking of me while you are also going through pain. We are all very lucky to have each other . Thank you again Kim. My very best to you .I hope you continue to feel better . You have the right attitude .Laurie R

Re: Is Anyone Having a Good Week, Please Tell Us about It

Barbara TX on 10/10/00 at 23:40 (030257)

Hey - I'm having a pretty good week, and I'll step up to the plate and tell you about it, because next week I'll be balling to y'all to tell ME a happy story. My foot still hurts, but I am managing not to be in too much pain while sitting or doing light walking from room to room Here is the week: I finally got the guts up to be seen in my bathing suit with all the beautiful people swimming laps at the local college. I swam for 40 minutes in FREEZING water. Hoo-ray for my motivation! I was the slowest one in the pool, but its a miracle that I could get there. I walked very slowly, but I got there. I also am finally sleeping better (without my evil nightsplint). I bought a pair of Birk Boston clogs that I like. I bought a toaster, also through the internet. My son's homeschooling supplies arrived and we are busy with that - so, lots of kindergarten things to play with. I am also happy that eswt is on my list of things to do, so I have a little more hope than usual. AND, I am trying to be happy in the moment, whether or not my feet comply - that is the hardest thing of all. There are still days when I just can't walk. My son rolls my office chair into the bedroom and we start from there, and I live my day on the chair or scooting around on the floor. But this is not every day. I used to cry ALL THE TIME and EVERY DAY. I am taking an antidepressant for this, and it has helped greatly. You might consider that as well.

Salina - your son is a sweetie, and your feet are teaching him to be a compassionate, loving person. I know that you hate you feet right now, but thank them for that! Sometimes it is so overwhelming, caring for a family with this thing. It is heartbreaking to lose your former way of life, but it is depression that tells you that this is forever- all the foot folks here have such positive stories at times. I cling to those, and I hope that you will too. Tell your son that we all love and need his prayers! Thanks! B.

Re: Having a Very Good Week!

Susan S on 10/11/00 at 07:43 (030268)

Me! Me! I took another injection 3 weeks ago and have had wonderful results. I've even work pretty shoes a time or two. Now before you get worked up, I am still being very careful and still stretching and splinting and doing all the things I feel like will be a part of my lifestyle for the rest of my life. But it really is wonderful to be thinking of maintenace rather than cure.
It is interesting to me the difference in the injection from one doctor to another. I'll remind you that origionally I saw a pod who was the devil, who gouged my foot and my insurance. I switched to a ortho who's last resort was the injections. I asked him at the last visit if this was just something that I was going to have to live with and he immediately told me NO and said his theory is that recovery is relative to the time you have had PF before you found the treatment that worked for you. And that the treatment that works for some does not work for others. (just a little justification for us all)
Salina, I know it's tough. My baby is a teen and it is had been hard on him at times. My heart goes out to all of you with small children. But look up! I played football in the yard Sunday afternoon and ran for passes and everything!
Kim, I leave tomorrow for my own little retreat from the world. Unfortunately, my husband is going with me but our schedule is for some serious R & R. After hearing your story there is a retreat not too far from here that I think I'll contact after the holidays when I'll need it the most!
x

Re: Having a Very Good Week!

Cynthia on 10/11/00 at 09:46 (030275)

I'm happy to report that I, too, had actually TWO good weeks after three years of suffering from hs and pf.
I think what did it for me was a new pod who was more aggressive than the first. I got shots in both feet, new
orthotics, the night splints (very helpful) and stretch A LOT, feet and calves and hamstrings. However, being an avid
tennis player, I feel the pain returning and slowing worsening. I'll probably get more shots next week, they must be
wearing off. But I was so happy not to take 9 Advils every day for two whole weeks! Is there hope? PS - he also approved a handicap parking pass which I only use when I am in pain and really need it, maybe this will help others,
too. And using a (gulp) wheelchair at Disneyworld was the only way I could go with my kids.

Re: Having a Very Good Week!

salina on 10/11/00 at 13:55 (030293)

Hey you guys. It does sound like some of us are on the upswing these days. Good to hear.
I am feeling much more positive today.
A retreat sounds like heaven to me right now. But just getting a cast and getting some relaxation that way will have to suffice for the time being.
I have seriously thought about hopping to one of the other islands and getting lost for a few days.
My birthday is coming up, and I told hubby all I want is to go spend the day by myself. I don't know if I'll go to the beach, or pool, or shopping (NOT!!). Oh yeah, and I will definately try out one of the restaurants we can't afford to go to with the kids. Don't worry, I don't have any hang ups about eating alone in restaurants like some people do. Won't bother me at all. Oh, Oh, and a movie. A movie that WAS NOT made by Disney. Thanks guys, I am plumb giddy about my birthday NOW. I think I have listed at least four things I will enjoy doing that don't involve hurting my feet.
So many of you are going through much more than I could imagine. And giving up things that you love to do. My heart goes out to everyone.
x

Re: Having a Very Good Week!

Scott R on 10/11/00 at 20:04 (030326)

Cynthia,
Which night splint are you using that you said is 'very helpful'?

Re: Who is this Scott R. guy that posts sometimes?

Kim B. on 10/11/00 at 21:37 (030340)

Just wondering.