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I will keep this short but TY

Posted by Tammie on 2/13/02 at 20:03 (073651)

Thank you a million times, I am scared and I am confused today, I was very surprised to read the answers tonight, it meant more then I can ever say! To each of you a big ((((HUG))) I am sorry, I have so much to think of and I am so unsure of what it is I need to find out.I promised I would be short tonight, as I did not sleep well , and I am going to turn in early, and take brians advice ,Thank you each and EVERY ONE of you ! A special prayer to you all! Now I am awaiting elliott to put me in order, he seems to have taken a leave, I hope that he is alright! He is not afraid to say what may need said. But I am very thankful for all of my wonderful supportive friends, now please help me find myself! Love to all of u! Tammy aka Tammie

Re: I will keep this short but TY

Laurie R on 2/13/02 at 20:14 (073657)

Hi Tammie , I hope you got the email I sent you on Wendyn post about RSD . If not I will resend it .... You know you have every reason to be scared and confused , I was the same way when I first found out I had RSD . I did not want to even believe it at first ... And I didn't I thought the doctor was wrong . Then I saw two other doctors and they both said I did have RSD . It takes time , believe me on this one... Like I have said to you , Janet C has been so wonderful to me through all the RSD and other foot stuff. She is very intelligent and compassionate and caring and that is even with all she has to deal with everyday ... She is my angel ....

We are in this together Tammie , wheather it's RSD or PF or TTS or any other foot problem .....

let me know if I can help you in any way to understand the treatments for RSD or anything about RSD . I am still learning as I go . I have some wonderful web sites Janet has shared with me , I will be glad to give them to you ..

The most important thing I can tell you is , early treatment is the most important thing when it comes to RSD ....

I hope you get some good sleep tonight , you are in my prayers ..

Much love to you Tammie , Laurie R

Re: I will keep this short but TY

Janet C on 2/13/02 at 22:49 (073664)

I've been thinking about you all day long, Tammie. I'll continue to keep you in my prayers. As my teenage son often complains, 'Life isn't fair!' And I have to tell him, he's right, life isn't fair... I think it's a long, difficult, grieving process that our disabilities not only inflict on us personally, but on all of our family's lives as well... but we will all be here to help you through it.

And thank you, Laurie, for all the wonderful things you've said about me - you're such a great friend! I wish we didn't have to meet through this awful ordeal, but I'm so grateful I've gotten to know you! You're my Angel, too!

Blessings to you all ~ Janet

Re: Tammie

Necee on 2/13/02 at 23:46 (073666)

Hang in there Tammie, you know how much we all love you here. I think about you daily and remember you always in my prayers. This is a very difficult time in your life, but your not alone.
I'm always here for you friend, because you've always been there for me.
Love and prayers,
Necee

Re: To ALL Thank u for the piece of your wing, You to Dr. Z thank u from my heart!

Tammie on 2/14/02 at 09:00 (073682)

Thank u for helping me with a piece of your wing friends. It is a scary road and the hill has been great,I often fall down. I have been blessed by the special angels here , who scoop me up and stand by me untill I find my balance again! Never leaving my side and holding my hand and a piece of my heart close to them each time! I am very scared, the hill seems huge, I am afraid of more pain, I am afraid of loosing , I feel weak and sad.I fear more Dr.s I fear there glances and there questioning eyes and the bored looks as they tell me Pain, hmmmmmmm maybe you should get on with your life,it might go away.. Those cold words hurting my heart as much as the pain I feel in my foot.Who thinks of the word pain? Who understands it? The people who feel it. The people who live with it , sometimes it is physical, sometimes it is in their heart, sometimes it is everywear, sometimes its brief sometimes it never stops.How do you explain that to someone who is unaware?

I am blessed with this board and the angels here who carry the pain ridden bodies, and hearts on there wings while they heal enough to stand up again and carry on ,nurturing thier heart till it gets strong.Helping with there wings outstreatched to those in need. Please forgive me as my wings are heavy right now and I need a lift, I need to head to the sun and find my sunshine in my heart as it seems to have grown dim and heavy with pain. Please my angels please stay with me in flightI am scared .Love and best wishes to all of those who carry the burden of helping those that carry the darkness in there hearts t finding the sunshine again and lightness of there wings.Thank u.I would like to carry you and take your pain ,but I am weak with heaveyness and need to find the sun!

Re: Re:To Tammie, I will share a little story with you

Laurie R on 2/14/02 at 11:39 (073702)

Dear Tammie , I wanted to share my RSD story with you and how I have come to terms with it .... When I first hurt my foot back in June of 99 , I was diagnosed with PF . I have a cousin and a aunt that both have RSD , so I knew what it was . They both were being treated for it by two different Pain doctors. They were both going through the spinal injections ... Niether one complained about the injections and they helped both of them with the terrible pain that comes with RSD... So I no matter how bad my PF pain would get , I kept thanking God saying at least I don't have RSD..

I understood all the pain they both had had ... It jsut scared me to even think I may have RSD . My Pod had told me one day , I think you may have something besides PF and TTS and my tendon problems , but I want to make sure . That is when he set me to see a foot specialist . This was the one I waited for almost 5 months to see due to my WC. Well My Pod did not tell me what he thought . He did not want to scare me at the time . This is when my bad anxiety started and he knew how I was .

So I go and see the foot specialist and he looked at all my films . Then he asked me all kinds of questions about my pain . Then he asked if he could look at my foot. Well Tammie , I wanted to tell him no , but I knew he had to check it ... So I said yes ,but I said please don't hurt me .. I am just like you , I hate for anyone to touch my foot ..... He did check it without hurting me . He is the doctor that diagnosed me with RSD .

I did not believe him , I should say I did not want to believe him . I do not have the same symptoms as my auntie or my cousin ... So I thought he was wrong . I went back to my Pod and he said the same thing RSD . Then he explained to me how important it was to get early treatment for it . And yes it can spread to other parts of your body ..... So that really scared me .

To make this short , I was to start going to one pain clinic for the RSD . It was to far for me to drive . So my Pod found a pain clinic near me . I have been going there now since Sept . I realy like my PM doctor ,I feel he understands RSD . I have had 4 spinal injections .... Learning to deal with a diagnosis like RSD was very hard for me.

Like I have said before , it was Janet C that has helped me more then anyone to understand RSD . She has been so very kind and wonderful to me .. Janet and I would both like to help you if you would like . WE both understand how hard this is on you to hear you have RSD .

The way they diagnose you for RSD is by your symptoms , their is no tests .. An MRI will not show RSD if my understanding is right . It is a nerve condishion that is so very painful ...

Anything I could do for you , please know I am here for you . I felt very comfortable with Janet from the start. I knew she had already gone through what I was about to .... She explained everything I needed to know , and really eased my mind with so much ...

WE are here for you Tammie .......

Much love to you , Laurie R

Re: To Tammie

Pauline on 2/14/02 at 20:14 (073744)

Dear Tammie,
After all the surgeries you have been through, time trying to heal and now hit with a new diagnosis, my suggestion for you is to get a comprehensive exam performed at a major medical center as quickly as possible. While we can provide you with support and encouragement, I don't think any of us are equipt to deal with the sum total of various difficulties you are having.

Your problems have continued to increase to a point where it is critical for you have a correct diagnosis to receive proper treatment, or you will continue to find yourself going in circles, becomming more discouraged and still in intense pain.

I personally think you put yourself at greater risk if you continue with a bits and pieces approach to address your various health issues.

My suggestion is that you journal, if you haven't already, your medical history from the time this all started, who you saw for treatment, treatments provided, all surgery dates, all tests and their result. Then secure hard copies of all xrays, Ultrasounds, MRI and any others tests you had along with their matching written reports, obtain the medical records from every physician you visited and all surgical reports.

Make copies of the paper work and your Journel so after your new appointment is made you can forward this information with a cover letter, including the date and time of your appointment, to the physician or physicians you will be seeing.

Tell them that you will be bringing the xrays, ultrasounds and MRI and any other tests with you, however, if they would like to have them before your appointment for review you will see that they get them.

Ask them to review your paperwork prior to your visit to familiarize them with your case. This will give them more time to examine and discuss your prior diagnoses and treatments with you at the time of your appointment. (Make sure you keep copies for yourself and bring them to the appointment as well). Sometimes things get lost or misplaced and you want to have your history and your test copies and results with you when you walk in that door.

You've had enough pain, heartache, disappointment, and frustration for a lifetime. Sometimes people find the solution to their illness in their own hometown, but sometimes they must travel to secure the best and most knowledgable experts to obtain their cure. Begin calling various medical centers and ask them who is top on their campus, check their credentials and only see the best. Don't settle for anything less.

My prayer will be that you will quickly find a physician or physicians who will finally diagnosis you properly and put an end to your pain.

Re: To Tammie - are you using your printer???

Julie on 2/15/02 at 02:56 (073763)

Hi Tammie

Here's a thought that occurred to me as I read Pauline's post to you. (I agree with her that you must forge forward and get an accurate diagnosis so that if you really do have RSD you lose no more time in getting treatment for it.)

Over the last few weeks, and particularly since your last doctor's appointment the other day, and his suggestion that you might have RSD, you've had a raft of suggestions and ideas from people. Some of these have contained useful information and advice which will be helpful to you as you proceed in your search for clarification and the right treatment.

Are you printing all these posts out? I think you should. It would be easy (and natural) in your present state of distress, just to welcome the support and be grateful for it, but there has been plenty of hard vactual stuff' too, and good advice, and you ought to keep it for future reference. I'm thinking particularly of Janet's recent post, and Laurie's - but there have been many others, too

So use your printer, and keep a file of hard copies of all this stuff - it so quickly gets lost in the archives if you don't.

I hope you're beginning to feel a little better, Tammie, and that you'll soon be ready to dig out the names of those specialists Elliott and others have mentioned, and start walking forward again.

Re: I will keep this short but TY

Laurie R on 2/13/02 at 20:14 (073657)

Hi Tammie , I hope you got the email I sent you on Wendyn post about RSD . If not I will resend it .... You know you have every reason to be scared and confused , I was the same way when I first found out I had RSD . I did not want to even believe it at first ... And I didn't I thought the doctor was wrong . Then I saw two other doctors and they both said I did have RSD . It takes time , believe me on this one... Like I have said to you , Janet C has been so wonderful to me through all the RSD and other foot stuff. She is very intelligent and compassionate and caring and that is even with all she has to deal with everyday ... She is my angel ....

We are in this together Tammie , wheather it's RSD or PF or TTS or any other foot problem .....

let me know if I can help you in any way to understand the treatments for RSD or anything about RSD . I am still learning as I go . I have some wonderful web sites Janet has shared with me , I will be glad to give them to you ..

The most important thing I can tell you is , early treatment is the most important thing when it comes to RSD ....

I hope you get some good sleep tonight , you are in my prayers ..

Much love to you Tammie , Laurie R

Re: I will keep this short but TY

Janet C on 2/13/02 at 22:49 (073664)

I've been thinking about you all day long, Tammie. I'll continue to keep you in my prayers. As my teenage son often complains, 'Life isn't fair!' And I have to tell him, he's right, life isn't fair... I think it's a long, difficult, grieving process that our disabilities not only inflict on us personally, but on all of our family's lives as well... but we will all be here to help you through it.

And thank you, Laurie, for all the wonderful things you've said about me - you're such a great friend! I wish we didn't have to meet through this awful ordeal, but I'm so grateful I've gotten to know you! You're my Angel, too!

Blessings to you all ~ Janet

Re: Tammie

Necee on 2/13/02 at 23:46 (073666)

Hang in there Tammie, you know how much we all love you here. I think about you daily and remember you always in my prayers. This is a very difficult time in your life, but your not alone.
I'm always here for you friend, because you've always been there for me.
Love and prayers,
Necee

Re: To ALL Thank u for the piece of your wing, You to Dr. Z thank u from my heart!

Tammie on 2/14/02 at 09:00 (073682)

Thank u for helping me with a piece of your wing friends. It is a scary road and the hill has been great,I often fall down. I have been blessed by the special angels here , who scoop me up and stand by me untill I find my balance again! Never leaving my side and holding my hand and a piece of my heart close to them each time! I am very scared, the hill seems huge, I am afraid of more pain, I am afraid of loosing , I feel weak and sad.I fear more Dr.s I fear there glances and there questioning eyes and the bored looks as they tell me Pain, hmmmmmmm maybe you should get on with your life,it might go away.. Those cold words hurting my heart as much as the pain I feel in my foot.Who thinks of the word pain? Who understands it? The people who feel it. The people who live with it , sometimes it is physical, sometimes it is in their heart, sometimes it is everywear, sometimes its brief sometimes it never stops.How do you explain that to someone who is unaware?

I am blessed with this board and the angels here who carry the pain ridden bodies, and hearts on there wings while they heal enough to stand up again and carry on ,nurturing thier heart till it gets strong.Helping with there wings outstreatched to those in need. Please forgive me as my wings are heavy right now and I need a lift, I need to head to the sun and find my sunshine in my heart as it seems to have grown dim and heavy with pain. Please my angels please stay with me in flightI am scared .Love and best wishes to all of those who carry the burden of helping those that carry the darkness in there hearts t finding the sunshine again and lightness of there wings.Thank u.I would like to carry you and take your pain ,but I am weak with heaveyness and need to find the sun!

Re: Re:To Tammie, I will share a little story with you

Laurie R on 2/14/02 at 11:39 (073702)

Dear Tammie , I wanted to share my RSD story with you and how I have come to terms with it .... When I first hurt my foot back in June of 99 , I was diagnosed with PF . I have a cousin and a aunt that both have RSD , so I knew what it was . They both were being treated for it by two different Pain doctors. They were both going through the spinal injections ... Niether one complained about the injections and they helped both of them with the terrible pain that comes with RSD... So I no matter how bad my PF pain would get , I kept thanking God saying at least I don't have RSD..

I understood all the pain they both had had ... It jsut scared me to even think I may have RSD . My Pod had told me one day , I think you may have something besides PF and TTS and my tendon problems , but I want to make sure . That is when he set me to see a foot specialist . This was the one I waited for almost 5 months to see due to my WC. Well My Pod did not tell me what he thought . He did not want to scare me at the time . This is when my bad anxiety started and he knew how I was .

So I go and see the foot specialist and he looked at all my films . Then he asked me all kinds of questions about my pain . Then he asked if he could look at my foot. Well Tammie , I wanted to tell him no , but I knew he had to check it ... So I said yes ,but I said please don't hurt me .. I am just like you , I hate for anyone to touch my foot ..... He did check it without hurting me . He is the doctor that diagnosed me with RSD .

I did not believe him , I should say I did not want to believe him . I do not have the same symptoms as my auntie or my cousin ... So I thought he was wrong . I went back to my Pod and he said the same thing RSD . Then he explained to me how important it was to get early treatment for it . And yes it can spread to other parts of your body ..... So that really scared me .

To make this short , I was to start going to one pain clinic for the RSD . It was to far for me to drive . So my Pod found a pain clinic near me . I have been going there now since Sept . I realy like my PM doctor ,I feel he understands RSD . I have had 4 spinal injections .... Learning to deal with a diagnosis like RSD was very hard for me.

Like I have said before , it was Janet C that has helped me more then anyone to understand RSD . She has been so very kind and wonderful to me .. Janet and I would both like to help you if you would like . WE both understand how hard this is on you to hear you have RSD .

The way they diagnose you for RSD is by your symptoms , their is no tests .. An MRI will not show RSD if my understanding is right . It is a nerve condishion that is so very painful ...

Anything I could do for you , please know I am here for you . I felt very comfortable with Janet from the start. I knew she had already gone through what I was about to .... She explained everything I needed to know , and really eased my mind with so much ...

WE are here for you Tammie .......

Much love to you , Laurie R

Re: To Tammie

Pauline on 2/14/02 at 20:14 (073744)

Dear Tammie,
After all the surgeries you have been through, time trying to heal and now hit with a new diagnosis, my suggestion for you is to get a comprehensive exam performed at a major medical center as quickly as possible. While we can provide you with support and encouragement, I don't think any of us are equipt to deal with the sum total of various difficulties you are having.

Your problems have continued to increase to a point where it is critical for you have a correct diagnosis to receive proper treatment, or you will continue to find yourself going in circles, becomming more discouraged and still in intense pain.

I personally think you put yourself at greater risk if you continue with a bits and pieces approach to address your various health issues.

My suggestion is that you journal, if you haven't already, your medical history from the time this all started, who you saw for treatment, treatments provided, all surgery dates, all tests and their result. Then secure hard copies of all xrays, Ultrasounds, MRI and any others tests you had along with their matching written reports, obtain the medical records from every physician you visited and all surgical reports.

Make copies of the paper work and your Journel so after your new appointment is made you can forward this information with a cover letter, including the date and time of your appointment, to the physician or physicians you will be seeing.

Tell them that you will be bringing the xrays, ultrasounds and MRI and any other tests with you, however, if they would like to have them before your appointment for review you will see that they get them.

Ask them to review your paperwork prior to your visit to familiarize them with your case. This will give them more time to examine and discuss your prior diagnoses and treatments with you at the time of your appointment. (Make sure you keep copies for yourself and bring them to the appointment as well). Sometimes things get lost or misplaced and you want to have your history and your test copies and results with you when you walk in that door.

You've had enough pain, heartache, disappointment, and frustration for a lifetime. Sometimes people find the solution to their illness in their own hometown, but sometimes they must travel to secure the best and most knowledgable experts to obtain their cure. Begin calling various medical centers and ask them who is top on their campus, check their credentials and only see the best. Don't settle for anything less.

My prayer will be that you will quickly find a physician or physicians who will finally diagnosis you properly and put an end to your pain.

Re: To Tammie - are you using your printer???

Julie on 2/15/02 at 02:56 (073763)

Hi Tammie

Here's a thought that occurred to me as I read Pauline's post to you. (I agree with her that you must forge forward and get an accurate diagnosis so that if you really do have RSD you lose no more time in getting treatment for it.)

Over the last few weeks, and particularly since your last doctor's appointment the other day, and his suggestion that you might have RSD, you've had a raft of suggestions and ideas from people. Some of these have contained useful information and advice which will be helpful to you as you proceed in your search for clarification and the right treatment.

Are you printing all these posts out? I think you should. It would be easy (and natural) in your present state of distress, just to welcome the support and be grateful for it, but there has been plenty of hard vactual stuff' too, and good advice, and you ought to keep it for future reference. I'm thinking particularly of Janet's recent post, and Laurie's - but there have been many others, too

So use your printer, and keep a file of hard copies of all this stuff - it so quickly gets lost in the archives if you don't.

I hope you're beginning to feel a little better, Tammie, and that you'll soon be ready to dig out the names of those specialists Elliott and others have mentioned, and start walking forward again.