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