Update on me
 

Hi everyone, I just wanted to post an update. I have not been around in a few days because my husband and I went on a little get away to brown county in Nashville Indiana. Since we weren't able to do our original honeymoon trip we came up with this alternative one which was very good for us! It was a nice time and great to be away from the city even though we only live an hour away:winky: lol. It was sad though because I was in so much pain I did not get to walk around and explore and go to the shops. We did bring my wheelchair but none of the stores were accessible and I tried just using my walker and that was way too painful :icon_cry: Luckily, we had a nice room with a hot tub which I spent most of my time in! We just got back and he is going to take me to a romantic dinner tonight so that will be fun.

We also talked to my stim rep and my doctor and she is sending me to some one else because according to her she has done all she can do with me. But my stim guy said he would still be with me which makes me very happy! I guess this is the best thing because she has not been very helpful lately and just makes me more upset and does not seem to care that I am in pain even though she was the one that put the stim in me. I am going to try to be optimistic that this new pain doctor will be able to help me and if this one is not good I will find someone else because I should not have to suffer like this :icon_cry: especially after going through all these surgeries! But that is life I guess and I am trying to come to terms with the fact I will probably never have the life I used to have and I may not ever have my stim working as good as it used too either. I have a CT scan tomorrow because my new neuro wanted me to have it after my EMG but he thinks that it won't show anything either so we will see.

I probably won't be around too much because we start school on Monday and I have other doctor/conditions I have to deal with and hopefully get help with. I also am having a very VERY ROUGH time in dealing with all this and am very frustrated, angry, sad, and depressed that my stim has let me down after it was such a great help :icon_cry::icon_cry::icon_cry:And when I get like this I am not much help to anyone so I tend to keep to myself. Also, I ended up not being able to take some of my courses I wanted because I just cannot physically do the on campus classes right now and to make things easier on myself I am doing classes online (although classes online are not easy I just meant easy in a physical way). I am hoping to get an appt with this new pain doctor very soon because I am having so much trouble walking due to my stim not working right. It is really hard for me to do much of anything right now because of all this pain :icon_cry: but I am still trying to hang in there and to focus on my goals (graduating in May and keeping my grades high so that I can get into teaching program!). I will definitely post back on here after I get that new doctor or if I get any test results.

I just wanted to let you all know this and just because I won't be able to be very active in posting I still read responses and postings and will be keeping you all in my thoughts and prayers! Good luck to all the new stim recipients, I hope that you find the pain relief you need and are able to have better lives ;) I also hope that the whole group of stim users that I have come to know and lean on and learn from are doing great too:grouphug:! You are all amazing and very strong and have helped me so much and made me feel like I am no longer alone :circlelove: Take care!

:hug:Tara

You are Never Alone
 

Tara, our dear friend-

You are the bravest of the brave. You have forged paths not trod before by we who follow. You know the trauma of a fall, and maybe other traumas, which coalesce into causation for your stim disruption.

Your rep feels as though the leads have moved, then that is a major victory. Going to another doc because the current one did not feel competent to help furher is a definite step into a new and brighter direction. Perhaps new eyes and better hands will notice your needs much more quickly. Aided by your longstanding rep relationship, your new doc should be poised to right the wrong done you in the fall.

I have my doubts about percutaneous leads and the movement risks you and others have pointed out, feeling so blessed myself that my docs, collectively, knowing I am an active athlete wanna return to be, opted for paddles. Already I feel secure in the direction of my healing.

The prayers I utter for you are in the direction of hope, peace, healing, comfort, resolution of your stim and pain profile picture. You and your husband need this and it is my hope and prayer.

Prayin,:circlelove::smileypray::Heart:
Mark56 PJ:) :hug:z

Tara -- I hope in that you going through all this process, you will soon find that silver lining. And hopefully, it will be in the form that the repaired/replaced stim works just as well or BETTER than the previous one. I'll be keeping my fingers crossed for you ;)

Thanks for the update. It sounds like you're on the right road. And don't worry about being upset about not getting back the life you used to have. Totally normal, and I'm sure all of us hurting people fantasize about what our lives would/should be like had we not been burdened with this beast. But, I can tell you this...... through this process, I've learned a heck of a lot more about people and life than I could have in my healthy body. Now, I just hope that this earthbound wisdom grants me some major brownie points when it comes to the afterlife........:rolleyes:

God Bless and Good Luck!! :hug:Vanna

Never forget you are a fighter!!!
 

Tara,

As Mark said, you are the bravest of brave!!! You have experienced things that no one should have to experience; however, you have also accomplished so many things during your struggles that it is truly AMAZING!!! YOU ARE AMAZING!! I seriously don't know too many people who have gone through all that you have yet at the same time achieved so much!

I truly believe that you are well on your way to finding your answers.....you have a new pain doc, a new husband who loves you unconditionally, and this group of crazy bionic butt buzzers that will support you every step of the way. With those odds, you can't lose!!

Take care and my prayers are with you!! :grouphug:

gemtle hugz:grouphug::hug:z

Things are getting worse!!!
 

Hi all my new friends, I am having such a hard time right now! I feel like whatever is going on with me be it stim or whatever is getting worse. I am now pretty much in constant pain and since my old doctor was not giving me anything besides neurontin and injections that made things worse I am doing very bad! I am also having more trouble recharging (its like my battery cannot find my implant) it takes so much time and then half the time it still won't work! My implant is actually in my lower back, she had to fix it during the revision because it was sticking out from under my skin and became really painful. But after the revision my charging was fine and I could do it really easy with the belt or the sticky things and I think it got harder to charge after my fall. It makes me cry from frustration and my old doctor the stim doctor laughed at me when I told her. And of course my stim rep still cannot reprogram me so even when I get the stim to work if I turn it up high enough to even give me a little relief it jumps in my stomach or middle and causes too much pressure! And within the last few days I am feeling pain around where my battery is inside and usually I do not even notice it is in there but now there is burning pain around that area too! I had my CT scan on friday and they originally were only going to scan my back and right leg but they also included where my leads are (thank goodness) because I told the tech I was having problems with my stim! I think I am going to try to call that new pain doctor office tomorrow (even though I am scared to) and see if I could get in quicker because I am truly suffering and I cry a lot because that is about all I can do right now! Thanks for listening I will be back when I get an appointment lined up or hear any results. I am feeling really REALLY down right now :Sob::Sob::Sob::Sob::Sob::Sob::Sob::Sob::Sob:

Prayin
 

Oh Tara- I am crying for you. How things go from bad to worse. If only the CT will reveal to your new doc the information necessary to receive TRULY BENEFICIAL help.

I'll pray more,:smileypray:
Mark56 :)

((((Tara))))
 

http://dl7.glitter-graphics.net/pub/...ilgbq8ovlu.gif

Praying for you Tara....

Don't be afraid to reach out for help - those Dr's are there to treat pain....
If it gets too unbearable, Tara, consider going to the ER.
No one should be in the condition you are in right now.....
I'm so sorry

Rae
:hug:

I am now my own advocate!
 

:hug:Rrae and :hug:Mark56 and :hug:pooh_ac and :hug:kzlrogue! Thank you so much for your caring thoughts and replies! I really appreciate the prayers as well. So, I called the pain doctor to get my appointment and I found out that I cannot have an appt until my stim doctor (the current pain dr) has sent a referral over! And of course no one had done that even though it was supposed to happen a couple months ago so I was quite upset but I did do something productive. I called her office myself and told them that I needed this referral ASAP because I am so bad and cannot walk and school has started but I am in so much I cannot sit still at the computer! She said that she would fax it over today or first thing tomorrow! So, I have learned that I cannot rely on doctors and offices to send over my paperwork I have to check in very often (even if I feel like a bother) in order to make sure my health gets taken care of! This is very important and it also makes me feel more in control even though everything going wrong in my body makes me feel so out of control! I am also going to finally see that female doctor in a few days and get that situation taken care of too. I am tired of feeling helpless and at the mercy of everyone in charge of my healthcare and treatment! At least I am a step closer to getting the new pain doc appt;)! I will let you all know what happens when I get anymore news! Take care and have a good week! :hug:Tara

So sorry to hear that things are dragging on so much. I understand where you are coming from... I've had many doctors over the years (these SCS implants are just the latest in a long line of health problems I have had to deal with since I was a child), and have "fired" many of them. Now I'm at the point where I go in, meet the dr. and assess whether I will take THEM on as one of my dr.'s or if I'm going to move on to find another doctor. I don't suffer fools gladly, anymore.

I have found that you often have to really stay on top of the doctor (that doesn't sound good :eek:...you know what I mean). At the first meeting I try to get chummy with the nurse and get her name and ask her if I may call her if I have any questions about my care, meds., referrals etc. Then I specifically call her and work with her to make sure things get done in a timely manner.

Also I make sure to get copies of everything...bloodwork, surgery notes, office notes, etc. and keep them in my records at home. Many times I've gone in to see a dr. that I've been referred to, and the only thing he/she has in their hand is my referral from my dr. and that's all. So they are thrilled (well, usually thrilled as my chart is so thick) when I have all this past info. to give them.

Sorry to go on so, but you struck a sore nerve here when you mentioned your dr. not sending your referral and you feeling like you have to chase after them to do it. Having copies from other doctors helps relay and confirm what you say your difficulties are, and when they see other doctors mentioning having treated you for that problem it goes a long way in validating your needing help.

I don't know if it's incompetence on the part of doctors or the fact that a lot of doctors and their staff are overloaded with patients and paperwork. I do know that my having copies of my records from all my doctors has made a huge difference when I go in to see a new doctor or even a current doctor. They can get patients confused and it's easy to pull out a copy of past bloodwork, an office note that another doctor may have made, or a past surgery transcription. I do whatever I can to make the office visit as smooth and worthwhile as possible. Again, sorry to ramble on:Talkative: Hopefully one or two things are helpful to you. Please know that you are in my prayers and thoughts. :hug::hug:

Bingo!
 

Fiona said it all! (with the extra benefit of 'staying on top of your Dr' :cool:)

Couldn't have said it better myself!
VERY wisdom-filled girl!!

Tara
 

Hi Tara:)

Im a newbie here in the past week, I too have a SCS implant in the past 3 weeks , so early days for me.

I been reading your posts and boy have you had so much to deal with in your short life. I hope that you get to see your new Pain Dr ASAP. Its soooo frustating when you find out that ,hey my old DR should have sent on a referral and then they didnt!! that makes me soooo mad:mad::mad: And you know at times you do have to DO IT YOURSELF and annoy them so much that they will be sick of your calls and requests and they will get the job done:winky:

Good luck with your new Dr and I pray that you will have relief very soon too..

Jackie :hug:

Another bad experience with a doctor's office!
 

I am back again (sorry:Bang-Head::ranting:) because I ended up in another argument with another doctor office because they did not have my records. The lady was extremely rude and told me that if I did not have my records in 24 hours (appt was supposed to be tomorrow) I could not have my appointment! I told her that this appt was important and I wanted to even see if I wanted to continue treatment with this new doctor and just at least talk with her about options and stuff. She then told me this was not a meet and greet and that I would not be able to talk to the doctor at all without those records! I have never been treated like this and I even explained to her that I had given my release to everyone else and that they were supposed to fax it over. I then took a breath and said I would call her back. I decided that I was over this whole thing where receptionists and doctors are allowed to treat me bad and I called her office back and basically told her that I did not appreciate being talked to that way and that I was going to find another doctor, this was the first time I have ever had to do anything like this regarding a receptionist or doctor. I was so angry I was shaking! I am so sick of all of my doctors or front desk people not following through on anything because meanwhile I get worse and feel worse. And it makes things worse when the front desk people or doctors treat you like you are bothering them and you should not even be there! ARGHHHHH!!!! I have to call tomorrow to find out if my new pain doctor even got a referral and if not (again) I am going to have to talk to that other office again I wish they would get it together! I mean, I am having a rough time as it is dealing with constant pain, my stim not charging right, hardly sleeping, and still trying to function and do my schoolwork! This whole episode is why I get nervous to see or talk to new doctors in the first place :mad: Just thought I would share that I had to get this out. It just gets me that people in healthcare (who are supposed to want to help us) get to treat us like dirt, I treated people better than I get treated (at the doctor) back when I was in sales and working! I guess I just expect to much from them or people that are supposed to help me. Oh well, I guess I have to get used to firing doctors:Sigh:

:hug:z:grouphug:

More
 

:hug:Z :grouphug:
Mark56

Tara
 

Next time you are up against a rude %^&*# receptionist,......do the intimidation stare......keep calm, then look at her badge and ask her name.
Then say you'd like to see her supervisor.

If all else fails, tell them all where they can stick their 'Meet and Greet' and let them know that your team of NT buttbuzz warriors will be making a grand entrance to show them what a MEET and GREET is really all about when dealing with a crew of people racked with PAIN!!! :eek::eek:

I'm sorry you are dealing with this. Sometimes we HAVE to be a bit intimidating to get the right kind of respect.
Go above that receptionist's head. She could use a nice refreshing reminder from her higher ups that she is not performing her duties up to par.

I've even used the words "My Attorney will need documentation as to why...."........alot of times THAT will get them to sit up straight and get the ball rolling. NObody wants to have to deal with answering to a legal issue.!

Just some thoughts
:hug:
I call it 'tough love' :)

Gets 'Em Every Time
 

Yep, those words you have "even used" tend to strike sanity into otherwise insane situations. People have used them referring to me, and I shook my head responding that I don't just go around threatening people. But, it does work. I remember dictating a letter of thanks to our O.B. onetime after the birth of one of our children. It went out on the wrong letterhead. Next time we saw the O.B. he was both dead serious and laughing about the havoc a letter from an "ugh" attorney caused, UNTIL they realized its content. Oops.

I drop the attorney bit from my reality unless absolutely necessary as it tends to frighten.

;) Mark56 PJ

Thanks guys ;)
 

Thank you for the replies. You all really know how to make me smile and I appreciate the support! Yesterday was my husband's birthday so I was busy spending time with him all day and tried to make up for our not so good honeymoon:winky:. I am so frustrated right now because I have spent 4 hours trying to charge and it did nothing so now my stim is on sleeping mode which is really bad because that means both legs get screwed up and the pain is even worse. Of course, I still do not have a pain doctor appt yet and of course no one sent my records or did anything. I am so sick of all this and besides that my attorney emailed me to check in on all my doctor stuff and we are going to try to appeal my case again which makes me nervous (I hate the court stuff). I am trying to keep a positive attitude about things so I won't be so much of a burden on everyone but it gets really hard. Tomorrow I have to go a class meeting on campus and I am nervous because well, I always get anxious on campus especially when I have to be in the wheel chair. And then after that I am supposed to go with my husband to one of my old friends from high school' birthday party. I am extremely nervous about that too because I have not been too social since my accident and hardly see my friends (but only a couple are still in my life still) and I am really nervous because they have not seen me like this. I know this is silly to worry about things like that but I do because at least when I had my stim implanted no one could really tell but now I am having to use my walker and chair and I guess it makes me nervous. I have to go and do homework. Have a great weekend everyone :grouphug:

You are not a 'burden'.....
 

You are going thru a very rough time right now. You are NOT a burden :hug:

I hope your weekend goes smoothly.....try not to 'worry' about what others will 'perceive' you as due to your accident. You'd be surprised to know that most people 'perceive' you as a very strong young woman trying and working hard to make your way thru this...
Relax in to it (i know that is easier said than done when in pain :( )

If people 'seem' a bit uncomfortable around you, it's probably because they want desperately to be able to say the right things of encouragement to you and they may doubt their ability to live up to what you deserve to hear.

I'm glad you've got your attorney working on your behalf
And your husband by your side.

Come here as often as it takes to 'unload'......you'll never be a broken rocord to us.
We are here for you

Rae
:hug:

I went to the party after all!
 

:hug:Rrae, thank you so much for that reply. It was really funny because I was secretly hoping we would get lost and not find the party but for the first time ever we made it there and I still did not want to go. But, after talking with my husband and he was with me I ended up going and you are right, people were actually nice! In fact, the old friends I had not talked to were nicer and more understanding then the new real time friends that I currently have. It was really fun and I made a new friend too so I am really proud of myself because the old me would have just not gone. Actually what was neat was that "Betsy" is a real conversation piece and everyone was asking me about it lol. And the people I did talk to said that I was brave and very strong to go through all this and still have a positive attitude (which I am getting better at that ;) It was really great to be around people my own age and since we are all turning 30 we shared the whole "its weird turning 30" idea and that made me feel better too. My friend who was having the party was really happy that I made it there and now I really know who my real friends are :) So, I am going to try to keep this positive and optimism going as I call my new pain doctor tomorrow to check on my referral status. This whole situation has really given me back some hope and made me more determined to go up against these doctors that are not helping and to approach this new doctor with an open mind. I am also working on trying to handle my stress better which its probably worse due to not being in therapy for 3 weeks with the added extra pain and of course the stress with my doctor. I will be back to post again after I get my ct scan results and of course let you all know when I see the pain doctor. Again, thank you all for the support and encouragement! And Rrae all of your smilies in your post always brighten my day :winky:

You GO girl!!
 

http://dl6.glitter-graphics.net/pub/...e99zncu2jq.gif

You just keep on being YOU. You bring a bright spot to people more than I think you realize!!

Congrats!!!!
 

Hi Tara:)


So good to hear that you had a great time AND that everyone was kind to you. And they should be;)

I hope that you have some good news tomorrow regarding your referral......and you make sure you GIVE EM HELL if they dont!!!!!!!!

Take care

Jackie :hug:

Yea tara
 

You went, you saw, you enjoyed!!! And besides, if you don't turn 30, you cannot possibly turn 56 which is my end of the time continuum thus far!!!:hug::grouphug::eek::circlelove::yahoo::I-Agree::Popcorn::icon_smile::Trapeze 2::You-Rock::Heart::Dancing-Chilli::partytime2:

Mark56 PJ:)

I nominate 'Betsy' to honor us with our next cyber party!
 

Tara, you and Betsy can host our next chatroom Bionic Buzzer Party!
Whataya say!

http://dl.glitter-graphics.net/pub/1...o2yeck58ez.gif

That is so COOL
 

I hope Tara says YES! I will so try to get there this time. And besides which, Rae has such cool access to these wompin great graphics! I just click on the stock standard stuff. Too much going on to get a big graphic thing set up. So, I just revel in Rae's art. Nice.

Mark56 PJ :)

Greetings Tara
 

Hi Tara- Today may be another hard day, but I just wanted to send a Happy Monday greeting to you in hopes that it will help as you advocate your way through the day. You are a very strong young woman [I speak as one with gray hair], and you can do this!

Blessings on you and your husband,
Mark56 PJ :)

Totally off topic!!
 

Rae this is just totally off topic but WHERE do you get the fabulous graphics......I use the 'usual' ones on the side bar but yours are just terrific!!!:hug:

GIVE US A CLUE:winky::cool:

Jackie :grouphug: