Join Date: Dec 2007
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