OK back again,,,,saw my programmer and Doc yesterday,,,,here's the scoop

This is normal,,,,go figure. I spent an hour and an half trying to get something to work,,,and it's better but not great,,,,then did another hour after a break,,still not great...
but you can't get beat up like that forever,,,so I go back tomorrow and will have better info for my programmer and she will be able to come up with something that will be liveable for a while,,,,then I'll come back up later in October when I can plan this trip better and we will try again,,,just so long as I can eat and say my name without pain,, I'll take it,,,, then later on we'll go after the beast again,,,,

She is confidant that she'll get me a lot better than this but it will take time. For anyone who has gone through programming when in severe pain you know,,for those who don't after too long you can't tell what is hurting or making it better because it just hurts so damn much. So you have to take a break to let things simmer down and then try again,,,,it takes the patience of Job to try and figure out what is helping or hurting and how the combinations of programs work together as a group,,,,,not everyone can do that job,,, I am LUCKY to have her,,,,

I was so scared and holding it together well,,,,until,,,,,I was getting on the elevator and my Doc was getting off and I saw him and I LOST IT!!! I threw myself into his arms and sobbed " please, please help me" and he stood there in his beautiful clean suit as I cried all my makeup on to his collar,,,, and he stood there,,,,just holding me saying "it's ok,,it's ok,, we'll make it better,,I promise" over and over again until I stopped,,,,,,he didn't have to do that,,, his compassion made him do it,,,,,that's who he is,,,he's human,,,,,,

After that all during my xrays and all the waiting I couldn't stop crying,,,,ask BM (Tina),,, that aint' like this girl,,I'm tough,,,,but seeing him made me break down,,,kinda' funny..

I went in to start the programming and at one point he came in again to just see how I was,, he didn't need to,, he wanted to,,, and I started sobbing again,,, and he came over and held me,,,he didn't say anything he just knew I needed him,,,,trust me crying like that during your programming doesn't help but they both understood,,,,,

So he left and I put on my strong face again and got back to the process,,,,I asked Erica my programmer,,"is this normal??" and she (who is not the warm touchy feely kinda' person) ,,put her hand on my arm and looked me in the eye and said " yes this is normal,,,sometimes your brain stops registering the signal and we have to change it,,,you will be okay" and then I knew that every dollar we went into debt for me to go there and get this done was worth it,,,,,this is my life!!! what value does that hold??? to have been able to go to the best clinic for my disorder,,,I was o blessed,,,,

The hardest part to all this has been the fear,,,7 months of real life,,,eating salads,,,kissing my husband,,,talking without fear,,,, was all taken away and I was left believing that it would never be back,,,because of not knowing,,I let my imagination run away with me,,,I thought the worst,,,,,just knowing that this will happen again makes living through this time easier,,,,today I am recovering from getting beat up yesterday,,figuring out what programs are good and what need to be changed,,,and just decompressing,,,getting me head around the fact that I will be better (perhaps not great,,,this time) and this will happen again,,and again,,and again,,,and sometimes will be great and others won't,,,it's a tool not a cure,,,,I kinda' forgot that,,,,it won't always give me the same coverage,,,but will always help,,, and help enough to get my life back to as normal as anyone with such a severe case of TN/AD as I have,,,,,

I thank you all for your good thoughts and prayers (to whatever higher power you believe in) they helped just by knowing they were there,,,,

And now because I can never end anything on a positive note I have a question,,,,,where are all of you from the beginnings of this thread??? I don't know you but I spent some time reading last night,,,all those people in the early stages of this who needed help and got it,,who were there for each other??? where did you go?? I get it that not everyone got the help they deserved,,,,but did someone out there go through what I just did??? was there one person who knew,,,she'll be ok,, it just needs reprogramming or even it sounds like it just needs reprogramming,,,,,ANYONE????

Because I could have really used you,,your help and support ,,,your knowledge,,,I know these systems have changed ( but dear god they're not as old as Tina's and she's still hanging in here helping us),,,but isn't the basic idea the same?? I will now know to not let it get so bad,, to pay attention more to the changes and to see Erica sooner,, not let this kind of terrible pain happen again,,,I learned and I will pass this knowledge onto anyone I can so they know,, so they do not go through the terror I did,,,
dId you decide that once you got help or are still struggling that you no longer needed us?? what about those of us who still need you???
Your knowledge, your input, support, disagreement??? whatever,,,where did you all go,,, because I could have really used your help in facing this,,,,,,ok

I love you all even though I don't know many of you,,I thank you all and am grateful for your thoughts and prayers even though I may not have been aware of them,,,they helped,,,I will always be eternally grateful for God getting me to the Cleveland Clinic and even more grateful for my Doc and Erica the worlds greatest programmer,,,words can not say how grateful I am for the support of my family and that my Stim worked well enough so I could kick my son out to find his own life and not worry about mine,,,I am grateful for Ken and 30 years of not killing each other yet,,,,,and words can not express how grateful I am for Tina who got me through the initial Stim process and continues to bless me in ways she doesn't even know,,although her life right now has been full of pain she brings me nothing but joy,,I don't know how she does it,,, MY warrior sister,,,,,thanks to you all

Beth I hope today was better all around for you. You are right I know NOTHING about having programs, settings or rechargeable battery . but I do know that those you mentioned 3 arent doing well... one had pns removed is candidate for MCS but dose not want to do it . so they are stuck in the cage with only meds to try and fight the pain monster another has pns in one of the 2 leads works well the other not so much so they are just keeping it as is and not having it out to have a MCS. when they are on the flip side of the ugly. I am sure they will be posting again. sometimes members forget they posted and are in other forums or f.b. ... But they are out . and ya know honestly having one get their life back and not look back is the best freaking thing ever. and on that note You get rest get back regroup . we will be in touch.
PEACE
BMW

Me again,,,,sorry if I came across as harsh,,it was not intended,,just fearful,,,,
There are those of you who came before me and I WANT no perhaps NEED to know how you are even if it's not good...because everything I can learn about this help me,,,,the good and the bad....knowledge is power,, it helps with our fears and tells us the right questions to ask....

OK,,so here it is.after three very long programming sessions I have a group that helps but not as much as I would like,,,,
SO I will live with this for now. The pain is not gone but much reduced,,,, and I will have to accept that for now...even the amazing Erica could not find something that could cover it all...we agreed that trying to program me in short sessions is not the best ,,for me.

So I will go back again in October after this has had some time to work and see if in time it helps more,,,that seems to be,,,for me,,the best approach...there is just too much pain involved on trying to do it this way.....
when I go back I will plan it for over a week,,when she can work in shorter times,,,less pain for me and the ability to give her better responses,,,,after a while it's too hard to tell what is helping and what isn't,,,, so shorter session every other day over the course of a week and with some pain already reduced,,,she is certain we can do better,,,,

It helps having a programmer who understands that it hurts me more than it does her,,,,but who still BELIEVES she can do better,,,,she has not given up and said,,,oh well that's it,live with it,,,, she encourages me and understands that not everyone can be programmed the same way,,,,it is reassuring,,,, I respect and appreciate her for that,,,,

So I will plan for this next trip and she can plan me in rather than coming in on her day off just to try and help me,,,,she had things in her life that needed to be done but took the time to help me anyway,,,,these people care about me and helping me control this pain,,,,,she is looking ahead and does not want me to face the Holidays and the winter without better pain control....
and every visit my Doc has made time to stop in and see me to see how I'm doing and he is genuinely concerned that we did not do better this time,,,,but he too understands that you can't always get it right the first time,,,,,,

Perhaps that is why I am so convinced that this hospital and Doc is the place to go,,,,for us TN/AD patients,,,,they really care and don't give up,,,,they keep trying,,,keep believing that they can do better,,,,it makes you feel that you are not the only one fighting for you to get better,,,,as I was leaving,,it was clear he had other places to be as well,,but he was with me,,one patient among the many,,,,
He gave me a hug and said "don't give up,,we haven't,, we will get this better" that's what you need to hear from your Doc,,,,
He's really done with me,,,there's nothing left for him to do,,no surgeries,,then why did he make the time to be there??? because he cares,,,,,he REALLY cares,,,,
knowing that everyone is with you in this journey,,,calms the fears and gives you hope,,,,,
I thank God daily that I was lucky enough to get to THIS hospital with THESE people,,,

No I am not pain free or even as pain controlled as I would like but I know we are not done at this,,,,we are fighting this pain together and that takes that burden from my shoulders and puts it on OUR shoulders,,,,,that weight I can bear.....

So now I head home,,,better but not great,,but still better,,,and I will come back and fight this beast together with these people who care about me,,,, and that I can face with less fear,,,,in the end that's all I can ask for,,,,

My love and thanks to you all,,,For the prayers and "good low pain vibes",,,,,I will stay here with you through the good and the bad and hopefully my knowledge may help someone else make this difficult choice or perhaps I may help someone who feels like the medical system has passed them by,,,,get the courage to go where I did and maybe ind the hejp they need,,,,,,Good Luck to all of us,,,,,Beth