Friday, November 2, 2012

Not knowing, complex decisions, Care

Dr.Bragg was in a really long surgery (well in to the night) so I didn't see/talk to her at all today but her NP stopped by this afternoon and we talked for quite a bit about this all similar really to the conversation I had w her other NP yesterday about giving each option a trial period which was something Dr.Bragg talked about on the phone on Mon when she called me (ie if this smaller surgery to remove the 2nd valve didn't work as we hope she'd like to give it a week or two before we did anything else.) and making sure we don't do to many things at once and if something does help not know what it was that helped. Its a good plan to have and I appreciate Dr.Bragg being tentative just need to remind myself one day at a time is better and even though I desperately want to feel better I need to be patient.

I was a little confused talking to Sue about getting out of here as on one hand she said if Dr.Bragg where to decide to do something early next week (seems un-likely) it would be better for me to stay in-patient but then she also said she wasn't sure what Dr.Bragg would want ie my getting out/care and it was probably be better to talk to her when she came around (Sat morning I think) and make sure she thinks the ultrasound was ok (we never heard anything about it from Radiology) and see what her thoughts are ie cont to wait and see or something else.

Admittedly as I've talked about in the past the hardest thing I have always struggled with regarding the medical stuff is simply not knowing a plan or even more so not having a (if even just) tentative timeline for when things might occur. I am the type of person who does well w plans, information and knowledge of when things might happen or what we/my draw are thinking and might consider trying. I think part of that is knowing that the provider(s) care (which I know Dr.Bragg's team does) and even more so being able to arm yourself ahead of time, I suppose to give yourself a distraction and feel like I am doing something (I don't know this one) for my care. Again about the best I can figure to explain my quirks...

I am hoping to be able to talk to Dr.Bragg for a few mind in the morning and see if her thoughts follow along what she was thinking Thursday and if she will let me go home as well regardless if we're waiting and watching (my first guess what she'll chose), trying one of the things previously talked about or?? I always feel more settled when I know a little of her ideas no matter the situation. Thankfully she is patient and seems to like to share her thoughts or possible ideas.

I in all this as usual just desperately want these headaches to GO AWAY! For good! It was a semi-rough day emotionally on top of the physical headache symptoms that very ebb and flow. I try to not focus on the un-knowns to much but today and even yesterday was failing semi-miserably at not having control and not knowing + even the worry am I going to spend the rest of ny life feeling this crummy so much of the time..(obviousmy none of us could answer that anyways as it is ultimately in God's hands). This afternoon my sis happened to call and I vented some to her as well some good friends in the MPS community left sweet messages in text and fb messages trying to cheer me up as they know the roller coaster ups and downs and how hard it is in not having simple answers or easy fixes/solutions.

I am grateful for those friends many whom are parents of MPS kiddos not actual Adults w MPS and for family who cares even though they don't always really get the actual frustration. (There is simply know way one can understand unless you've been in endless decision making, coordinating and day to day-ness of a chronic, complex and very time consuming issues like MPS care.) But my family is still there and tries and for them I am grateful, very grateful!

Thanks for stopping by,


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