[tchr012]

Well, I have been trying really hard to stay optimistic and keep hope that I would get my pain appt and then I called and they did not have my REFERRAL or even know my doctor was getting me an appointment! After that I had to head to my hematologist office for bloodwork and the usual and I was in alot of pain but trying to hold it in. I was in my wheelchair because of all the pain and not being able to walk today because my stim was not charging and causing problems to both legs. Anyway, the nurse came to take me back and I started crying. I never ever cry in public and here I am really crying and I cried all the way back there and finally stopped after the blood pressure was taken and the nurse had given me some water. I thought I had it together but then a new doctor came in and he was so nice and actually seemed to care about me and asked me if I was all right, I cried again and he was not mad or made fun of me he actually listened to me! I explained the whole horrible experience with my stim doctor and how she wont help me and how the records and referral won't get sent over and he patiently listened and I also told him about the cat scan. He had a copy and said that there are no pinched nerves or anything and that the STIMULATOR was the problem! Finally, someone who listened and actually said what I had been thinking all along, I was so happy to finally feel like I wasn't with someone putting me down and fighting me! Then he said he is personally getting me into their pain specialist office and that I will not have to deal with my stim doctor's office and that this whole thing is ridiculous and that he was going to make sure I finally was given some help that I needed and deserved! I feel like my prayers were answered in this appointment and even though I was embarassed about causing a scene (crying in front of everyone at the doctor office) I think people there took me seriously and understood how bad things are and that I am suffering a lot and need help! My husband was great during all this too and was not mad that I cried in front of the doctor. I just wanted to share this because I think I learned a lesson that sometimes you need to let your true feelings out instead of trying to hold everything in just to not make other people feel uncomfortable! I also learned that it was okay to cry when I was in pain and that the more I hold it in the worse it is and it just actually felt a bit better to let all of those feelings out and just cry. So anyway, I shared this because I know other people that go through pain and I am hoping by sharing this they can see that it is okay to let our feelings show and we don't have to keep everything in all the time! Now I am truly having optimism because I know that this new doctor cares and will really get me into someone that is going to help me and I will be able to have a life again! I will let you all know when I get my appointment set up. Thank you so much for listening to me and giving me support and encouragement! Tara

[Rrae]

THANK YOU for sharing this!!
You know what this almost looks to me like??? Regarding your SCS Dr and that she won't get the referral notes sent..... It's almost as tho she 'knows' she screwed up the SCS and doesn't want to have to fess up to another Dr about it!!
I honestly think this SCS Dr needs to be confronted!!
Please correct me if I'm wrong!
But @#$%^& she'd just rather let you suffer as opposed to getting her paperwork into the hands of a doctor that can HELP you!!
omg i'm pist.

On the good note, I'm SO GLAD your new Dr heard you out and is determined to get you the help you need!
This may sound a bit 'heavy', but I almost feel like that SCS Dr should be reported to the AMA or something.......
For the sake of future screw ups and what she's put you through!
She has not complied with several issues and this has cost you an incredible amount of mental anguish.
I really feel like she needs confronted.....
I hate what you've been thru.

[smae]

Hugs hugs hugs! You've been through a lot and I'm so glad that you are finally getting the help you need and deserve! Huge hugs sent your way and lots of prayers as well!

[Mark56]

Yea Tara- Finally you have a professional on your side who understands your plight and is pushing you to the next level to get your stim issue addressed.

Crying in public? Sure it can feel embarrassing, but we are ALL oh so HUMAN. I remember when just before falling of the edge of the earth into the chasm of surgical medical care I have been through I was in a lawfirm conference room one day on the West Coast preparing a client for an important deposition. Such work is hard, pressing, demanding, and the travel was excrutiating given my injuries. I broke down bawling like a calf in front of my client. My Client. He knew what I had been through. Everyone did, but it didn't necessarily make me feel better, and at that moment the mortification..... but, one is only human. Then again at both a discogram and an epiduragram, the modern industrial equivalent to torture a' la the Inquisition------ afterward I did not bawl.... I was sobbing. SOBBING. And could not stop.

You are in the blessed arms of your husband, surrounded by those who care for you, and physicians who now understand your plight. ALL know pain produces emotions no human can fully control. Let yourself be human. Just understand some shed tears are OK..... they are truly OK. I understand your situation today. I do. AND I am so glad you are going to get H E L P!

ASAP,
Mark56 PJ

[smae]

Originally Posted by Mark56

ALL know pain produces emotions no human can fully control. Let yourself be human.

Quite possibly the simplest four words I've read on this site, yet the most profound. Let yourself be human.

That touched me in ways I cannot explain right now.. maybe not ever.

Thank you, Mark.

[fionab]

I am so so glad for you that you've FINALLY got a dr. who is both listening to you and taking steps to help you. I'm so sorry you've had to suffer at the hands of other "professionals" who have obviously dropped the ball in your situation. You can now put them on your "fired" list.

However, before you do or say anything to them (that they rightly deserve), it may be a good time to ask them for a copy of your chart as you do have a right to have a copy of it. That way you may get some valuable information that you can use towards building your own chart on yourself. Ask for bloodwork results from past 6 months, any test results from past year (MRI's, CT scans etc.), any doctor's notes (if you can read them), and any notes from other doctors that may be in your chart.

If you haven't already started collecting your records, this would be a good place to start. And with this new dr. and whomever he refers you to, get in the practice of asking for copies of your records from them, too. There's been many a time I've been glad I was able to look back on something. If you are unable to go in personally to your old dr., have them fax you a release of information form, fill it out saying you want a copy of the aforementioned items, sign it and have your husband go in to the office and wait while they make the copies for you. Given the bad way they've treated you in the past, I wouldn't trust them to copy/mail them to you.

Another thought...maybe your new dr. will be asking for those records from your old dr.?? If so, maybe he/she will give you a copy.

Sorry to but with you being so young it would be good for you to begin having a copy of your own records. Throwing a stack of paperwork down in front of a dr. can go a long way in getting them passed their preconceived ideas of whether you're "really" sick/in pain or not. This, unfortunately, is the reality of dealing with chronic pain.

Hang in there!!

Originally Posted by fionab

I am so so glad for you that you've FINALLY got a dr. who is both listening to you and taking steps to help you. I'm so sorry you've had to suffer at the hands of other "professionals" who have obviously dropped the ball in your situation. You can now put them on your "fired" list.

However, before you do or say anything to them (that they rightly deserve), it may be a good time to ask them for a copy of your chart as you do have a right to have a copy of it. That way you may get some valuable information that you can use towards building your own chart on yourself. Ask for bloodwork results from past 6 months, any test results from past year (MRI's, CT scans etc.), any doctor's notes (if you can read them), and any notes from other doctors that may be in your chart.

If you haven't already started collecting your records, this would be a good place to start. And with this new dr. and whomever he refers you to, get in the practice of asking for copies of your records from them, too. There's been many a time I've been glad I was able to look back on something. If you are unable to go in personally to your old dr., have them fax you a release of information form, fill it out saying you want a copy of the aforementioned items, sign it and have your husband go in to the office and wait while they make the copies for you. Given the bad way they've treated you in the past, I wouldn't trust them to copy/mail them to you.

Another thought...maybe your new dr. will be asking for those records from your old dr.?? If so, maybe he/she will give you a copy.

Sorry to but with you being so young it would be good for you to begin having a copy of your own records. Throwing a stack of paperwork down in front of a dr. can go a long way in getting them passed their preconceived ideas of whether you're "really" sick/in pain or not. This, unfortunately, is the reality of dealing with chronic pain.

Hang in there!!

WHat a fantastic idea Fiona. I never would have thought of getting copies of various tests I have had done over the past few years. I do remember at one time gettins MRI scans and taking them home, only to bring them back again, and never see them again
But excellent advice!

Originally Posted by tchr012

Well, I have been trying really hard to stay optimistic and keep hope that I would get my pain appt and then I called and they did not have my REFERRAL or even know my doctor was getting me an appointment! After that I had to head to my hematologist office for bloodwork and the usual and I was in alot of pain but trying to hold it in. I was in my wheelchair because of all the pain and not being able to walk today because my stim was not charging and causing problems to both legs. Anyway, the nurse came to take me back and I started crying. I never ever cry in public and here I am really crying and I cried all the way back there and finally stopped after the blood pressure was taken and the nurse had given me some water. I thought I had it together but then a new doctor came in and he was so nice and actually seemed to care about me and asked me if I was all right, I cried again and he was not mad or made fun of me he actually listened to me! I explained the whole horrible experience with my stim doctor and how she wont help me and how the records and referral won't get sent over and he patiently listened and I also told him about the cat scan. He had a copy and said that there are no pinched nerves or anything and that the STIMULATOR was the problem! Finally, someone who listened and actually said what I had been thinking all along, I was so happy to finally feel like I wasn't with someone putting me down and fighting me! Then he said he is personally getting me into their pain specialist office and that I will not have to deal with my stim doctor's office and that this whole thing is ridiculous and that he was going to make sure I finally was given some help that I needed and deserved! I feel like my prayers were answered in this appointment and even though I was embarassed about causing a scene (crying in front of everyone at the doctor office) I think people there took me seriously and understood how bad things are and that I am suffering a lot and need help! My husband was great during all this too and was not mad that I cried in front of the doctor. I just wanted to share this because I think I learned a lesson that sometimes you need to let your true feelings out instead of trying to hold everything in just to not make other people feel uncomfortable! I also learned that it was okay to cry when I was in pain and that the more I hold it in the worse it is and it just actually felt a bit better to let all of those feelings out and just cry. So anyway, I shared this because I know other people that go through pain and I am hoping by sharing this they can see that it is okay to let our feelings show and we don't have to keep everything in all the time! Now I am truly having optimism because I know that this new doctor cares and will really get me into someone that is going to help me and I will be able to have a life again! I will let you all know when I get my appointment set up. Thank you so much for listening to me and giving me support and encouragement! Tara

Tara

Its great to hear that FINALLY you are getting the Dr and the medical attention that you truely deserve. Its just unimaginable to think that your previous DR cant or wont send on all your paperwork. Its outrageous!.
Its true what Rae said, maybe she DOES know that she has messed up. Maybe she should be CONFRONTED and tell her exactly how you feel about HER and the situation. I hate people who say one thing and do the other

As regards crying in public! WELL you have EVERY right to. So what if people look and stare or even feel embarrassed. TOUGH . This is your life. This is your pain. This is your right to have proper medical attention in a proper manner. This new Dr sounds lovely and Im sure he will put you on the right road from now on.
But if you want to or need to cry at any time in public JUST DO IT!!!!! dont give a hoot what others think..........

So very pleased for you

[burntangel]

i know how you are feeling, some days we just have to cry, there isnt anything else we can do. i have rsd, its uncureable,and untreatable most of the time unless i want to be doped up to the point of not knowing who i am, or sleeping all day long. i dont know about you, but my life wont allow for either one, so pain it is.
i would like to ask you a question though if you dont mind. my scs is only six months old, and is already showing signs that its not what its cracked up to be. i fell in love with the trial version, but the per isnt the same. it dosnt mask the pain as well. do you have these problems?

[tchr012]

Originally Posted by burntangel

i know how you are feeling, some days we just have to cry, there isnt anything else we can do. i have rsd, its uncureable,and untreatable most of the time unless i want to be doped up to the point of not knowing who i am, or sleeping all day long. i dont know about you, but my life wont allow for either one, so pain it is.
i would like to ask you a question though if you dont mind. my scs is only six months old, and is already showing signs that its not what its cracked up to be. i fell in love with the trial version, but the per isnt the same. it dosnt mask the pain as well. do you have these problems?

burntangel to our group! I am so sorry that you are in pain and having a rough time. I understand what you are going through and I have pretty much been in chronic pain for at least 14 years now although a car accident made me end up getting my stim. My stim used to work great and took away my pain in my lower back and both legs so I was able to walk and even exercise. I fell last September and it caused my leads to move and since then things have been really bad. I cannot charge properly, I have pain when I turn it up, it only covers about barely 10 percent maybe 20 percent pain coverage right now. Since my original stim doctor had to do a revision in 2009 she has said she gives up on me and will no longer see me or help me. So, that is why everything is so bad right now. I used to love my stim so much to the point I gave speeches about it at college to some classes but now its the opposite. However, since you have only had yours 6 months (mine was implanted in 08) I would talk to your doctor about the problems you are still having. I know that the stim helps some people and not others so I am not sure about yours. Also, even with my pain gone when it was working I still had RSD symptoms but my pain was worse than those so I took it as a trade off because I was not on any pain meds. I hope that helps answer your questions I really think you need to talk to your stim implant doctor to see if there is anything that needs adjusted and you can also talk to your stim rep as well because maybe they can reprogram you and that would be able to help! Let me know if I can do anything else to help you! take care 'sTara