Sunday, January 27, 2013

Those 'second guessing voices' inside my head...

I have a really hard time with really wanting to feel better and wanting to be able to tell family (especially) that for instance a shunt surgery hasnt necessarily worked as well as we might have hoped.. I have an incredibly hard time when say my parents call in the morning or my sister calls and I can tell they are truly hoping "this will have been the one" and I just want to be done and one to work longer term and not good at really expressing my feelings as evidenced I guess if even Dr.Bragg makes comments to my parents how I keep things inside.

How do you do this 'one day at a time' thing when everyone around you is thinking '3 months ahead' as far as something working or not? I know my family gets this stuff as much as anyone can if your not the one sorting it out but it's so incredibly hard to be the patient and to watch their feelings and know it's hard on them but to feel a little like I am causing heartache. I know it all bothers my Mom alot and that on fri she was apparently really upset during the surgery and crying when Dr.Bragg came out probably bc it was somewhat un-expected surgery and kind of last minute and she probably wishes she could fix it. I wish I could fix it and I wish I knew better sometimes how to relate to howmy parents feel about all of this - my Mom and I are close but I dont think we've ever really been the type to talk a whole lot about these kinds of things untill we get pissed about something anyways. :)

I am glad I dont need to rely on other people to deal with this stuff and I can just compartmentalize when it gets to be a bit much at times and I can research my questions  to get more information +  learn about what my docs are thinking of wanting to do. I am glad I can get along w the nurses well and the residents for the mot part as I learn from them to. On the other hand I wouldnt want to give up my independent "i'll figure it out first for myself  and tell you when im ready" personality but I do kind of wish I could do a better job of sharing my feelings, asking for help sometimes (vs keeping things to myself or stressing about asking for help) - I have an entirely hard time picking up the phone and asking providers for help and hate relying on my parents for things like post-surgeries. Not bc I dont love them but bc I wish I could just make them my family and not so much like they have to care for me. Yah, I know its what parents do but it doesmt mean I like having to have help from others any better! I could be better  at understanding other peoples need to ask questions or work through their feelings (my Dad) in seeming more open ways as I dont always want to talk about how I feel. I guess all of us could be better in one way or another and these are just things I cant help but think about sometimes. I doubt i'll ever really like telling another person what I feel (vs an impersonal "this is what ive experienced and what has helped me") and will probably always be a loner in the sense id rather go to my Apt at night then out with friends or pick up my nephew vs something wild and crazy. I share alot about myself  here but dont always feel that comfortable sharing some of it and  then on the other hand feel like I wished there was someone who could have told me some of the quesitons I wondered pre-and-post diagnosis (MPS). I sometimes think if my writing this can help others both w MPS and w hydro (which it seems to from the emails and messages I get) then I can write it and sometimes share more. Writing is always mroe impersonal thankfully anyways!

As far as the shunts Im not sure what the next step is ie if Dr.Bragg will discharge me and we'll wait and see or what but i'll update probably monday if there is anything great to wite about otherwise again soon.
And if you are her great partner then when I asked hm today if he had any 'magic' tricks to flash (in front of my nurse) he (I guess) jokingly but I also think rather stuck up like told me: "I did my magic trick and gave you to Dr.Bragg" - I had afew comments to that on the tip of my tongue but didnt say them and thought to myself "You didnt pass me to anyone, you told me I was making up my symptoms and essentially wrote as much in his clinic note + then it was through my reaching out to someone I knew personall at UW I found the Adult Neurosurgeon willing to take my case + he talked to Dr.Bragg and really recommended her. I dont often admit it but his comments kind of bothered me; I am bad at second guessing myself sometimes and despite things she JUST SAID TO ME SAT couldnt help but think "does she ever regret taking me as a patient of hers?" I hope not and am guessing maybe not by all the things she does but dont  know..

Thanks for stopping by the rare and true confessionals of my inner feelings,

Thanks for stopping by,


1 comment:

  1. Erica,

    I started to remark that it is amazing to me that after all you've been through, you can still focus on the impact it has on others.

    But clearly, this is both hard on you and hard on your family. And each of you watching the other deal with everything just seems to put additional stress into the mix.

    I don't know that there is any solution to that, except for you all to hug one another closely and know that you and your family are all, truly, in this together.

    Wishing you all peace and strength.