I broke down at the doctor's office....
 

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:winky:! 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:mad:! 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:winky:! 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:grouphug:! :hug:Tara

Wow! Tara
 

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..... :eek: 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!! :eek::eek:
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.
:hug:

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!

FINALLY Tara
 

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 :)

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. :hug:

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. :Bang-Head:

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 :deadhorse: 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!! :hug:

Hey Tara
 

Tara:hug:

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:mad:

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..........:hug:

So very pleased for you:grouphug:

Excellent advice
 

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:confused:
But excellent advice!:winky:

Hi friends, well the last few days were very stressful and emotional for me and I had to get some stuff done for school (more like catch up on a lot of homework). Thank you for understanding about my crying episode at the doctor. The reason why I said that I was scared to cry in public was because I was taught to never show bad emotions in public or I would be in a lot of trouble so I guess that kind of sticks with me. Also, I was embarassed because I know that there are people that are going through way worse than me so I feel kind of guilty crying over me just being in pain especially since I am so used to it unfortunately. I know that it is important to get my notes from other doctors but they cost money and sometimes I cannot afford them especially since my medical history is extremely large and very complicated. Also, I have having some weird problems with getting a pain doctor (yet again). I am still trying to get my pain dr appt but every time I call them I cannot get through or they make me leave a message. Well, the referral people left me messages saying that I can only be called 3 times and then they will not see me in the pain clinic! Isn't that crazy and then when she does leave a message it is super fast so you can barely understand what she is saying! This pain doctor I am trying to see was actually the original one my stim doctor was wanting me to see but never sent the referral until I guess yesterday (which was after the whole episode with me in the blood doctor office that i wrote about). So, if I don't get in with that one because we keep playing phone tag as they said then at least I have a back up pain doctor to try to get into so I have some options which is better than not having any at all.

*This is off topic but I am also upset because I have been getting my records from old doctors and I finally got the records regarding what happened during my hysterectomy 4 years ago. I found out that there was nothing wrong with the organs they took out and there was no endometriosis even though they told me there was! They also told me that I had have one and it was my last resort to fixing my pelvic pain I had for 10 years so anyway, I know I should just let it go but I just do not understand why they did this to me when things were normal and my dad (whom I am no longer in contact with) and my ex husband had also lied and told me that the doctors had found a lot of endometriosis. Its just kinda sad because I am still in pain after going through it besides the fact of not being able to have kids. I mean I was at a place that I was okay with not having kids and just adopting in order for me to get better but now it feels like I did all of it for nothing:icon_cry:. I am sorry I know that is totally off topic but its something that is really bothering me and made me upset.*

I also agree that maybe my stim doctor won't send records because this does reflect on her work and she does not want to look like she is to blame. I had to get a letter from her before so that I could give it to school to get ADA accommodations and I practically had to fight her office just to get a letter that cost me thirty dollars! I am really going to keep trying to be optimistic however, that this new pain doctor (whichever one I get to) will be able to help me. As always, thanks for listening! Will give you an update as soon as I can :hug:Tara

Oh Tara
 

Tara:hug:

Im so sorry that you are upset tonight. I mean as if you dont have enough on your plate and now this:hug: You know I dont think anyone would mind the fact that you 'went off topic' at all. Afterall, if you can share all the other pains in your life why not open up here to the people you know are kind and going thought the same pain and want to help and listen.

I dont have the words to describe how sad I feel for you. You sound like a lovely young woman and to read that you are getting messed around by you PAIN DOCTOR is dreadful. But Im sure that it will all be sorted out soon. In fact Im sure you are FAR better off getting rid of this old pain doctor because basically SHE IS A PAIN HERSELF :wink:.......I hope that you will feel happier soon and get that appointment which you truely deserve!!

Take care

Jackie :hug:

Oh Tara
 

Opening your history to us in this way is so tender, special, and the offering up a travesty of the system that healthy organ tissue was the target of any removal procedure. I cannot bring to mind a way to get around anyone, any professional taking such advantage of one who, as you, had untreated and difficult to diagnose pain episodes. There is no way if the pathology indicates healthy tissue that such a professional should be practicing. I am so saddened by your history to learn of this terrible result. And now you know.

In my case, a doctor did not want to treat me. Told my wife and me that he found no reason to treat me at all [I hope he reads this because he know who he is]. Point is, when I demanded ALL of my records so I could go elsewhere because the pain was incapacitating, he did me the kindness of dictating a letter to file covering the whole mess with "the patient is a lawyer." The point of relevance to need for care..... none. The result to me permanent irreversible nerve damage because in the next few weeks before I could get care EVERYTHING went to heck in a handbasket, including I could no longer void or defacate. Patient is a lawyer....... posh. Who Cares!! Evidently this mouse of a physician did.

You, being human have suffered much at the hands of others. May you at long last be rendered care which is befitting one who is in need of treatment so you may live life fully as the teacher and wife you are meant to be, enjoying every moment.

Blessings on you,
Mark56 PJ :)

Pain doctor one is a no go
 

Well, the pain clinic I was talking about earlier that I had to leave messages I finally talked to them. And they said that I cannot be seen here since they had to contact me three times so they are not going to keep my chart (or whatever it is). I figured this would happen because their office really does not sound organized or professional anytime that I talked to them. Also, it might be good if I don't go there because the last time I was at the hospital they are with I had a really bad experience! The uro-gyno who was treating me for IC, used way too big catheters for my treatments and never numbed me and she tortured me for weeks (again because bad insurance) and when I finally got away from her (better insurance) I found out she should not even be doing the treatments according to my urologist and it caused more damage! So, I am not new to mistreatment from doctors I have a long list of horrible experiences and some were even beyond the realm of medical treatment (like several people holding me down for an exam (the private kind that was not needed) when I cried and yelled and protested) and of course the hysterectomy so yeah, I have suffered a lot because of bad BAD doctors! Anyway, lost my train of thought.
However, I did get a call from pain doctor office 2 but the problem with that is this doctor usually won't see patients with stims already in BUT I talked to the nurse and plead my case and she is going to talk to the doctor to see if she will help me. The catch to this is if she does take me as a patient they will probably take my current one out and do another surgery with a new stim which at this point may be the right way to go! So anyway please say a little prayer for me that pain doc 2 will take me and that I will finally be getting help that I desperately need.:hug:Tara

That is horrible!
 

:hug:Mark56, that is so horrible what that doctor did to you! I can understand that though because I know how some doctors and even nurses can be the complete opposite of caring about us patients! I am so glad though that you finally have a good set of doctors to take care of you because that is really important and I am really glad the stim helped you :) I remember one time I went to see a new uro at this one hospital and he was so awful and told me there was nothing wrong with me and that i was wasting his time. He took me off all my meds and things got so bad that one of my kidneys is permanently damaged and does not work as good as the other one! I really think that if doctors could experience what we go through it would give them some perspective that is much needed :winky:

My Physiatrist
 

Thanks Tara- and one cool thing, is that my physiatrist has been through the back pain and surgery stuff as a patient, although not as an implant patient. He is one good guy, Doc Sacha, board certified, and honorable. A patient's doctor.
Mark56:)

Both pain doctors are not going to help!
 

Well, I reported yesterday that the first pain doctor office said no because they had to contact me more than 3 times and now the 2nd pain doctor is not going to help either! They want me to see another doctor that works with Boston Scie instead of Medtronic implants which is what they do! And that is all fine and wonderful except now I need yet another referral and the only choice or option I have left is to plead my case to my internist and see if he can give me some help or do something! I am so angry and upset right now because I am not on anything for this horrible pain that keeps getting worse (especially when charging problems happen) and I cannot sleep or really want to do much of anything! At this point I just want this ripped out of me and to start all over because I feel way worse than before they put it in the first place! Its extremely ridiculous that I have been suffering so long and yet no one has been able to help me even giving me something for the pain! I have an appt with internist next Tuesday so hopefully something good will come out of this! I just do not understand how something that was changing my life and made me feel so much better is now doing the opposite especially since it gives off new pain when I try to turn it up! I am at the end of my rope today :Bawling::hissyfit::Sob::Sob::Sob:

I'm so sorry that all these doctors are treating you like this :hug: Would your internist be willing to give you pain mgmt. until you can get into see someone? He/she may be unwilling to if they think it's a permanent sort of thing, but if you let them know it's just temporary until you can get this mess sorted out he/she may be willing to. I know I've had doctors in the past that were willing to give me a pain med. if they knew it was just until I could get into see a new doctor who'd take the situation over.

Could you do this in reverse and contact Boston Scientific and ask them names/contact info. for doctors they work with in your area? Then you could call them and see how they go about taking on new patients and hopefully find one who'll just need a referral from your dr. (I know, when I say "just need a referral" sounds like here we go again:mad:)

As a last resort, have you tried going to an UrgentCare for pain help? One time I was fortunate at an UrgentCare and the dr. that I saw had some insight into the medical community in my area and she was able to give me some names of dr.'s who I went on to see (she'd left her last practice to join Urgentcare so she'd be just treating colds/accidents as she'd gotten burnt out).

Praying for you :smileypray::smileypray:

rsd with scs
 

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?

The problems with my stim....
 

:hug:burntangel :welcome_sign: 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 :hug:'sTara

Thanks fionab
 

Thanks for the suggestions! I won't be able to do anything until I see the internist next week and even then it is hard to get pain meds from him. Maybe when he sees me crying in my wheelchair he will be more apt to believe that I really am in bad shape and give me something. Our urgentcare places don't give you pain meds or much of anything and if you go to ER they give you an IV of pain meds while you are there then send you home without anything and tell you to talk to your family doctor. I also talked to Boston scientific and they don't help with the whole pain doctor thing and that is also what my rep said too. So, guess I am stuck here still in pain until next week. At least when I get the referral to the other doctor that pain clinic suggested I would be able to see them and hopefully get my stim fixed! I appreciate the kind thoughts and prayers though! take care :hug:'sTara

Just a question!
 

As I'm from Ireland some of our language differs from yours. So if you don't mind me asking , what is an internist? And what is a revision? (review??) maybe)

Thanks.

Jackie:grouphug:

To answer your questions:)
 

Hi Jackie, my internist is basically someone that takes care of all my medical problems by overseeing all of my specialists. I have a lot of complicated health problems so I can't see a regular family doctor and instead I have an internist. All he really does for me is give me referrals and hooks me up with specialists that I need. He also watches over all my meds (I am on 8) and sometimes I talk to him about changing them. I also see him after I have been in the hospital or get injured or need to change my blood pressure meds.

The revision actually was a surgery to fix my stimulator. Sometime after my permanent implant my leads moved (one went up the other moved down) and my stim did not work right anymore so she had to go in and fix my leads and during the revision she also put my battery pack in deeper because it was sticking out and was sore for me. Oh yeah, and we found it out because my rep could not reprogram me and they had me do an xray and they could not find my leads! No one knew why my leads moved and she said that it had never happened like that before. Hope that helps, I am always happy to answer questions :winky: take care :hug:'sTara

Oh Wow!
 

The situation just seems to compound injury on insult for you Tara. I like Fiona's suggestion of contacting Boston Sci to see which physicians they work with in your area. And doggone it, if they cannot/will not come through with something right away, I will contact my rep and ask Mike. Maybe he could give some heads up.

Burntangel, welcome, and it is sad to hear you are also experiencing difficulty with your stim now. It just seems like there are many for whom we need to pray here..... many. Mine is only since 29 June, so I am still a newbie when it comes to stim life, although Rae seems to have a more positive outlook. Tara's hit came more from injury which seems to have moved long standing percutaneous leads which her then doc tried to correct surgically... we think. Is that right Tara? Now, she is just trying to get someone to look into her situation since the pain is so high.

Jackie- think of an internist as a doc who treats adults whereas a pediatrics doc treats children. The revision Tara underwent was to attempt repositioning leads which seemed to move when she took a fall. Her story is really much more laid out in this and other threads of hers under Tchr012.

Praying for ALL,
Mark56 PJ
:grouphug::grouphug:

I'm having trouble putting this into perspective ?
 

As i know you are and my heart is going out to you.

Didn't you say you've got an attorney overseeing this?
Where is he in all of this?
And NO, I'm not suggesting using the 'threatening as a 'ploy'......
I just don't understand where your attorney is in all of this? Is he just in the part regarding the car accident? Or is he trying to get your first Dr (the one who revised you and then 'gave up' on you?) to fess up to her mistake and at least hold her responsible in getting this SCS taken out of YOU??

This is obviously going in circles. Fiona mentioned what I suggested awhile back, that if things are getting THIS bad....Go to ER.! THEY will contact your original SCS Dr to say 'what gives?'.
Why are you letting your first Dr off the hook by not making her responsible for the SCS that does not work? Instead, you are running around looking for NEW referrals, when in fact, it's gonna be hard to get ANYone to take on a case of someone else's mess up.
So AGAIN i ask WHERE is your attorney in this?????

For your 1st SCS Dr to just say to you that she is 'giving up on you' is patient neglect.
Something isn't coming together here.
You are going to get some 'tough love' somewhere in here, either by this 'new' Dr office that you will be in and no, there is absolutely nothing wrong with breaking down crying.....but SOMEone is going to look beyond your tears at some point and tell you that YOU need to be your advocate!
And I thought you had an attorney. :confused:

You are going to be in and out of many offices before you get someone to say they'd be willing to take on your case until after you have your botched SCS removed so they can start over.
Your 1st SCS Dr is RESPONSIBLE to take this SCS OUT!

If there is something here I am not seeing, PLEASE enlighten me.
You need to stand UP for yourself (if your attorney is not who I thought he was in your prior posts) and make that 1st Dr accountable.

I truly do care and want to see you get the help you need.
I just don't comprehend WHY you are allowing your first DR to 'walk away' from the ScS SHE implanted and is needing to be taken out. She is responsible to do this.

I'm sorry, maybe I've missed something and I've had a pretty bad few @#$% days myself, so it's very possible I've missed something here.

Caring
Rae
:hug:

Thanks Tara ,now that makes sense:D

Well I do hope that you get yourself sorted out and SOON. As Rae was saying Dr no 1 is RESPONSIBLE for the botched job so Dr 1 needs to address this situation and NOT walk away from it........

Jackie:hug:

Dear Rae
 

Dear Rae:hug:

I hope you are having a better day today than of late. You know you are here reading everyones posts and give invaluable advice and encouragement. And behind it all you are having dreadful days yourself. You are such a positive person and my goodness you do help us all with our 'problems' . Let us help you whenever we can please :grouphug:

Jackie:hug:

My attorney is only for my accident
 

:hug:Rrae, I am so sorry you have been feeling bad lately. I hope that you get to feeling better.
Now, I am going to try to address your reply. My attorney is only there for my car accident and is there to help my case against the people that hit me. I have told him about all of the doctor stuff and he does not give me advice about it and just tells me that he hopes I feel better. I am not letting my doctor get away with anything and I have definitely been acting as my own advocate with all of these doctors. Its a very complicated situation and there is a lot involved especially since me having to get the stim as a result of the accident is a major part of my lawsuit so she is one of the doctors that we have to use in order to defend my case. I also cannot just go back into her office if she won't even see me and today I left a message for my stim rep to tell him what all the new tests showed and ask him what I should do in regards to trying to get her to do something or just go to another doctor. I also have more than just the stim situation going on so I am extremely stressed and have a lot of pressure and am trying to do school even though things are so bad. I am trying to handle everything the best I can right now but its hard because I am exhausted and tired of dealing with rude doctors and nurses. And also like I said before the ER is not helpful at this point because I have been there for the same reason and all they ever tell me is to talk to my internist about all of it. And you have to stay around there all day just to even be seen and then they stick the IV in and send you on your way. And I was not talking about using tears to get my way at the doctor office if anything it was just because I usually force myself not to cry when I see him so I meant I will let him see my true feelings and how bad the situation is. I know it is a really complicated and messed up situation and is extremely overwhelming but I am definitely being my own advocate and sticking up for myself. That other stim doctor (with the second pain clinic) was going to see me but she chose not to because I do not have a medtronic brand stim in. So the only options I have left are to talk to my stim rep to see if there is a way he could help me to convince the stim doctor to take it out or fix it (which is what I am working on) and the other option is to talk to my internist about my problems with that doctor and to see if he knows a better stim doctor as well as place that would manage my pain. So, that is where I am at right now and like I said I am doing the best I can with everything right now.

Tara:hug: I will pray that all will work out real soon :hug:

At the risk.....
 

If counsel recognizes legally pertinent issues relating to the ongoing profile of a client whom they serve, commonly they will bring up the newer aspect of the issue pattern, namely, the care resulting in exacerbation of your pain picture. Rae is trying to help you, Tara, to focus on the responsibility portion of what is happening beyond the very fact of the original procuring cause of the car wreck.

In my situation, not desiring to attempt brain surgery on myself while pain ridden and under severe medication, I had two counsel, and to this day have such reps. One for the wreck aspect, the other for my CARE. Distinct issues, and some counsel feel the need to step back and separate from one or the other due to their experience and expertise.

Now, given such a view to the points, perhaps Rae's commentary makes a bit more headway as you review where you are.

I am glad I have counsel keeping docs and insuror on their toes. Makes for care worthy of the profession all around because accountability comes into play.

Caring as is Rae,
Mark56:)

This whole situation is a mess....
 

:hug:Mark56 and :hug:Rrae, I appreciate your advice and I understand what you are saying. But again the situation is way more complicated and I cannot hire more attorneys and go after everyone even though the stim doctor does deserve that. I understand what you are saying about having separate counsel and that would be good but that just won't be able to happen right now and I have to make due with the lawyer I have at the moment. And since this was not a regular car accident (well parts of it were) its become a very stressful and complicated case. There is a lot of money involved and everytime I have to have a stim surgery or spinal procedure my lawyers adds it on my case. And I also need certain doctors to stay on my side especially if they have had to treat me after the accident. This whole process with the case has been horrible and all I want is to be better. And when they put in my stim I was doing better up until the leads moving.

I also ended up going to the ER last night because of the pain got so bad it made me get sick and as soon as I said I have a stimulator (and even explained the whole story) they said they could not do much for me and I would need to see my internist. The only thing they did was put IV's in me for fluids because I was really dehydrated from throwing up which affects my kidney problems and they also gave me pain meds (morphine) by IV. Since I had just had ct scan they saw it and said that there was nothing wrong but it sounded like all of this was happening because of my stim problems. They kept me a few hours and sent me home with a script for nausea meds and told me to take Ibuprofen 300's for the pain (which does not do anything but I still trying it none the less. It was just like every other time I went to the ER! And for some reason the pain has been getting worse within the last couple weeks or so and I am not sure what that means or why it is happening.

I am still waiting on my stim rep to call me back with his thoughts and see what he thinks about it and besides that I will just have to wait til my dr. appt. on Tuesday so that I can talk him into giving me the referral to a new pain doctor that deals with Boston Scie stims. I am probably feeling worse too because I have not seen my therapist in close to 4 weeks and things just keep piling on and its hard to think or do much of anything when your pain is this high! Its hard enough for me to keep all my assignments up and remember when things are due. Its just so hard because my family wants me to keep being all smiley and happy and not dwell on this but it kind of makes things worse. I'm either worried it won't get fixed or that it will never be like it was before (back when it helped me). Lately, I have been worried about the future too. Also, lack of sleep is probably taking its toll on me as well! Hope you all have a great weekend! Take care :hug:'s Tara.

Rrae, I hope that you are feeling better. I hate that you are having a rough time because you always make us feel so much better around here! You are one of the most inspirational people on here and a big support and motivator! I really hope that you are taking it easy and that things get better for you! Big BIG:hug:'s and prayers for you :)

((((Tara))))
 

I'm sitting here with tears in my eyes trying to find words.... I am so sorry about all of this.
I don't even know what to say. :( I was going to put something on your visitor page to try to be encouraging and when I saw the picture of you and what a beautiful young woman you are.......then seeing your avatar...."Betsy".....i pretty much lost it.
That's all I can say.
You are so incredibly brave it just breaks my heart. You come here to this little 'family' of ours to try to get things to come in to perspective for you and I feel as though I added extra weight on to what you are so desperately trying to stay above. My intensions were good, in that I want so badly to see you be able to get your life back, yet I feel as though I put undue demand on you in trying to get an understanding of what you are up against.
Thank you for explaining your situation to make it clearer to try and grasp. Lately I've been letting the reality of the unrighteous neglect of innocent patients get the better of me. I am so angry at what I've been seeing and it's eating at me from the inside out.

I'm sorry you ended up in ER last night, only to be treated as you have before.....it's as though you are being 'brushed off' and nobody will take your medical case and make something happen for you.
I pray that your appointment on tuesday sets you on a higher path. I pray that your Dr will realize how important it is that you get the attention you deserve.
I understand what lack of sleep can do to a person.
I'm on day 4 of hardly getting any sleep and frankly I don't even know which way is up it seems.

I was doing a google search recently on a certain medication that I was needing more information on and I was wanting to find out if the generic form of this medication had a different effect than the name brand....
It made me absolutely sick to my stomach what I stumbled upon.
It was a forum made exclusively for drug users/abusers! These people were sharing on their forum how the best way to get 'high' from the very medications that half the people on OUR forum can't even get prescribed for their serious pain conditions such as RSD, neuropathies, and all the other ailments that have plagued the innocent people here.......
I could not believe my eyes. I felt as though I had wandered into a horrible dream blanketed in shear evil!!
The reality of what really goes on in this world is appalling.
There are so many hurting people coming to this forum looking for encouragement and answers and at the very same time, there is an entire forum out there dedicated to people who want to share with each other everything that goes against what the DEA is attempting to keep a control over. And WE are the ones who are paying the price for it!
I've never felt so sick in all my life.
I had to just completely shut my computer down and walk away.

I owe a special thanks to Mark, Jackie, and a wonderful new woman here named Tabbycat - who all just 'happened' to be here in our chat lounge as the sun was rising this morning. Thanks to them and the fellowship we shared, I was able to snap back in to reality of how precious people actually CAN be. It made me realize that we all need each other to stay strong.

YOU have been an inspiration to me as well, Tara, and I just wanted to tell you this. You are a very strong and beautiful person and someday you will be able to put this nightmare behind you.
Keep your 'armour' on and stand firm and fight the good fight of FAITH and you WILL come out a winner.

God Bless you my friend
Rae
:grouphug:

:hug:z:grouphug::hug:

Rrae you are so amazing!!!
 

:hug:Rrae, thank you so much for writing me back. Thank you for saying that I am strong because I am feeling very weak right now and like I keep letting everyone down:(. I was really worried that I made everyone mad the other day and I do not want that. This "family" on here is so important to me because you guys are the only ones that I have that really understand what I am going through. You are also the only ones that I can be myself without fear of being made fun of or people ignoring me! Yesterday, was an extremely rough day for me and I apologize if I came across as rude or anything in fact, it was just so bad that I just started bawling last night and could not stop. I just feel like I am dealing with a lot of loss right now and some of it is stim related but their are other things as well. I mean I had to cancel our wedding (because of all this), my teenage cousin is pregnant and its really affecting me and just going through all this lack of health care it really is wearing me down. Especially when both pain doctors dropped me I guess it was like a smack in the face. I guess to it is really hard that my stim helped out so much at one time and now I am left with this so yeah its hurting me so much, I am hurting so much right now! I do believe that the stim is a life changer which is why I always try to post to other people using the experience I was having with it (when it was working) and try to be a positive as I can and then talk about the current stim situation on my own threads. I don't like to bring other people down so I try really hard to not constantly post negative things but the truth is I am having a hard time and I do not know what I would do without this new family! Like I said when I went through it a couple years ago I had no one to talk to and I was terrified and I pretty much went through it all on my own but it was the same situation with some of my other surgeries. Going through the hysterectomy by myself was the worst experience because my dad just made me stay shut up in a room the whole recovery period, then made me go back to school way too soon and it caused more pain!
I am glad though to read your post to me because at least I know you are not mad at me or anything, because I really would be sad! I know you are also going though your own health issues and pain and you have a life so I always include you and all my other friends on here in all of my prayers. But I think you were one of the first people to actually welcome me and made me feel wanted and you are always there for other people and you need to take care of yourself too :) I appreciate each and every smilie and post you send me ;):circlelove:
That is really sad about the drug abuser site, but I am not surprised. I do get really mad when people talk about that because I get treated so much like I am just an addict wanting to get high when I really am just in pain and would like to live my life. Sometimes I want to say to my doctors is it to much to ask that I just want to be able to live again and finish school, go to work, get a house with a puppy, and adopt? Well, thats all I am going to say for now ;) I have to get some school work done. Take care and BIG :hug:'s!!!

Thank you
 

See! That just goes to show you how strong you are!
If anything, Tara, I feel like I should be a dartboard right now!

.......(aim high.......shoot low......:o )

How on earth could anyone be mad at you!!

I shouldn't even have been on here in the frame of mind I was in......mad YES. but oh GoodLordHaveMercy not at you! I was mad FOR you!
.......:rolleyes: does that make sense?

Mad at the medical neglects..... (not YOU Pooh!! :hug: )
Mad at the DEA........
Just .....mad.
bleah.

You precious precious people
 

It is painful emotionally to learn of the difficulty a friend is enduring and those who have endured so much so very young that it boggles the capacity to get our hands around. Like you, Tara, to be treated as you were through the eradication of healthy tissue so that now you have feelings of sorrow when seeing your relative with a child you know cannot be yours. To be ignored as you have been Tara, and yet you struggle up each and every time. Oh, how I wish you and Pooh could connect right now because each of you deal with some pain by reason of the limitations or failures of your units. Just wish you could connect.

Sarah, who now frequents other boards, with her pains and aches from childhood having felt deprived for so long while enduring such overwhelming pain.

And Rae, dear Rae, who sees depravity in some fora where folks speak openly about abusing pain meds some of us struggle to receive. Yes, and then there is Tom, who on another thread is deeply deeply troubled because his aching profile evades the masterful diagnosis of a professional who could help.

All I can say is that through this means of sharing, caring, and praying one for the other as Rae so aptly put it, we can rise above our own pain and in and through that pain reaching out to others become the stronger because of the reaching. I feel it everyday. When tempted because pain hits or the neuropathy which stim cannot and will not help in my lower legs so that I feel a tug to reach for the supply of meds I still readily have to take because being med dulled, I could not feel the lower limb neuropathy so much. Yeah. But through all of you, through my faith, through the embrace of God, I do not reach for the meds. They languish unused in the safe. Out of my reach. There if the doc says so, but away from my system because that is a goal of purity I want to hold to fastly.

You people all humble me over and over ad infinitum through your generous spirit that reaches out and says, "one more time..... you can make it one more time." You are strength. You are support. You are what makes NT so much the better for your participation.

Thank you for blessing me,
Mark56:)

Sorry I've not been on the computer. Felt like I needed to give myself a few days away from being caught up in this SCS thing. My husband needed my attention and I felt like I've been neglecting him, what with my recovery and being in pain.

I'm so sorry that you're having to deal with all of this. I can sympathize with you as I've had health problems since my teens and I'm now 51. Started out as serious female problems when I was 12 (I, too, ended up having a hysterectomy...was a no brainer as I was told I couldn't have children anyhow and the back pain was intolerable). So have had to help my husband who mourns not having any children as he so wanted to be a dad. I struggle with not being able to give him that blessing everyday. Then on top of that, serious hormone problems since a teenager. Then 5 back/neck surgeries. Then finding out I was so sick since a child, infection wise, because I was born with a genetic immune system problem. The treatment for that is doing daily infusions that take 3 hours and costs $6,000 per month for the rest of my life.

I was like you in that I dragged myself through college, dragged myself to work everyday and finally had to close my practice approx. 6 years ago when everything hit me and I crashed and burned. Now I've just had 2 SCSs' implanted and wonder what the future holds for me, health wise.

I, too, did not have any support with most of my health problems. My family were not supportive at all and basically accused me of being a hypochondriac. My husband, while being with me through some of it, has had his struggles with all my health problems. It almost wrecked our marriage a few times, but our commitment to one another and our marriage is what has pulled us through.

I'm saying all this to let you know that I understand perfectly where you're coming from. I cried myself to sleep many, many times and often felt like everyone would be better off (and possibly happier) if I wasn't around. Often, the pain would be so unbearable that I would have to pretend the house was on fire just in order to force myself mentally to push past the pain and force myself to get up out of bed.

Then there were the doctors who either blew me off, wanted to put me on antidepressants, told me I was lazy and needed to lose weight. Then there were the doctors who, when physically examining me, would yank me in various positions to where I would start crying and they would look at me as if I were crazy. I actually had one dr. say, "what do you want ME to do??" when I started crying. So, as I've mentioned in the past, many doctors have been fired by yours truly but it took being mistreated by many doctors to finally get to the point where I would do that. I thought I needed to go in, be the compliant and nice patient and then I'd get help. Then I'd try to be the angry, you need to help me patient. It all seemed to be worthless. Fortunately I've finally found some good doctors who've helped but it hasn't been because it's been easy.

I'll be praying for you because I truly understand what you're going through. Don't worry about us getting mad, or upset at you....you have enough to deal with right now. We all understand the need to vent and that we oftentimes type things in a way that we really don't mean to say. Hang in there, kiddo. We all love you and are rooting for you!!!

To I Cried...
 

I cried for two solid days last week. I am like you...I never cry. I feel like I have been given enought in the last few months...I just do not think I can stand more...Now that I am not crying I am looking for support groups and advoctes. I am realizing that I can not do this alone. I have RSD, I am tired of explaining this, I am tired of being in pain 24/7, I am tired of meds. not working, I am tired of not having a doctor who is there to explain this more, I am tired of not having my life, I am sick to death of new normal.....So I finally cried. I do not know what the answers will be but this week I am going to advocate for myself, make phone calls, get a doctor's office or clinic to listen....THIS IS MY LIFE....My prayers are with you. I truly understand.

Hello Marjmlk
 

It's so good that you've come upon this forum! :hug:
Your post is very touching.... and inspiring. Just seeing people reaching out to one another is priceless.
It's good to see that you are making a determined stand for yourself.
Neurotalk is FULL of people who care, understand, comprehend, and 'know'.
I hope you stick around and get to know more folks here.

I'm so sorry about the RSD nightmare you face. The world around us doesn't seem to truly comprehend what a horrible thing this is and what it does to us.
Pain is the common bond that brings us all together and we gain strength, understanding and wisdom from one another.

Among the many forums here at NT, there is a specific one for RSD. It is a very active forum and many friends will embrace your words and share their stories of how they cope....
Here is the direct link to get you there, if you aren't familiar with the main menu.....click on:
http://neurotalk.psychcentral.com/fo...aysprune=&f=21

Again, thank you for sharing and it will be great if you stick around.
Your words of understanding and determination will take you (and others) far.

God Bless
Rae
:hug:

Tomorrow is the doctor appointment!
 

Hi friends, hope everyone had a good weekend. I was really busy with school stuff and then a friend came here for a visit so we were spending time with her. My grandma also visited and brought her dog which that was fun because I love dogs :) Thanks for everyone that replied and shared their advice, wisdom, experiences and encouraging thoughts! I appreciate it very much! Tomorrow I am going to see my internist and also hopefully I am going to hear from my stim rep. I will let you all know what happens after my appt. I am really just going to go to my appointment hoping for the best and be open to whatever suggestions he has for me. I also have therapy too which is good because I am going through so much and talking to her helps me a lot! I have to make this short because we have a lot to do to get ready for tomorrow. I will write a bigger reply tomorrow ;) Take care:hug:'sTara

:hug:fionab, Thank you for sharing your experiences with me. I am so sorry that you have had to go through all of that pain and illness! I really hope that the stimulators give you good pain relief :) take care!

:hug:Marjmlk, :welcome_sign: I am deeply sorry that you are in so much pain and that you have been ignored too. I am so sorry that you are going through this! Thank you for sharing your story and I hope that you get some help for your RSD pain very soon! take care of yourself.

Thank you Dear Fiona
 

For making the time to share what you did in this post. You are one remarkable person so full of strength to take, work with, then share of your triumphs and your challenges. The blessings you bring to these pages are far beyond measure.

Grateful,:grouphug:
Mark56:)

Fiona thank you
 

:hug::hug:Fiona:hug:

Thanks for sharing your story and your life. You are remarkable and you are so inspiring. It puts everything into respective when I read your post

Thank you:hug: