Friday, August 29, 2014

"I don't..."

"I don't agree with the plan and theory". Those are the words included in a message from my Pain Mngmt dr this morning. She is good so I know she wouldn't say it lightly. She knows me well and knew me before I began seeing Dr.Bragg (just over 3 yrs now) so she (Dr.B) has seen the pre-2 shunts ups and downs. Prior to Dr.Bragg Dr.B tried many, many different medications (medication classes) over a long-ish period of time to try and improve the headaches. She was always a firm believer the symptoms I was having where headaches/symptoms from the then LP Shunt and tried many, many times to get others to help. Some of my Specialists at the time tried also to help her but others where of little help.
Thankfully through a friend (someone I worked w a bit at APF who formerly worked at UW) I was able to find a Neurosurgeon willing to see me and in turn through that dr. found Dr.Bragg. I am forever grateful to her (Dr.B., and Dr.Bragg) for having believed me when I am sure there where many reasons why she did not have to see me (including her partner who had not believed me nor believed drs. of mine who where communicating with him).
Although I don't think she has given up (I hope not, it scares me actually) I do see how different it is then in the beginning, everything takes so much longer. In the past if I'd have called with a question (regarding changes in symptoms) they would have called back but now I just feel like a pain in the arsh pt. (whether true or not on my part I don't know). I am sure part of it is that she is just much busier given likely she has more things to do having been in practice longer. That said as any patient knows it doesn't make feeling worse and feeling like everyday is a big question mark any easier.
For as long as I've been dealing with a lot of Specialists I've still just never gotten used to having to rely on someone else to feel better or having to ask for help! I admire pts. (or families) who have no qualms about calling their Providers or pushing for answers (I think I am pushy but I am not sure if it's a good thing).
Honestly to I think I could do better to have better patience, which has never been a particular strength of mine when dealing w medical stuff, waiting for answers (solutions).
I wrote on fb earlier "I can honestly understand why pts just go to the ER, atleast your likelier to get answers, though I don't think it's the right thing for me to do right now". After not hearing back from Dr.Bragg's office today (called her Secretary regarding my PM drs. thoughts and regarding vision changes w the headaches) I really can understand why pts just get to a point where they feel bad enough or feel bad even if intermittently and you feel like it's just not going anywhere fast that going to the ER might get a solution or at least feeling a little better, faster. I'm not going but boy do I wish I felt better. =/

Honestly b/c I don't always come up w questions to things we talk about right away after appts. I miss being able to email and she would respond. I miss us coming up with solutions faster, even if it didn't always work we atleast got relief intermittently and sometimes just having a small bit of hope, that relief might happen or even when we'd get temporary relief it was enough to re-charge me to keep on dealing w this, to keep on pushing.
I realize it may sound like I am giving up, or depressed and I am not but I am discouraged and that is hard. I just want to be able to have hope. I just want to be able to do things without thinking about (praying) i'll feel ok or at least ok enough and almost most of all I just want to be able to read without feeling "the dizzies" (as a friend whose daughter who also experiences the same vision issues when having shunt issues calls it). I also want to not feel like an annoying, high maintenance pt!
As I am sure is more than obvious from this I am feeling more than a little discouraged by these symptoms, sure they may be intermittent but it frustrates me that reading, most of the time is so difficult (a problem when headaches are a problem but these have been occurring more often). And as I wrote above that everyday, especially mornings and for that matter nights are so crappy. I get up hours before I have to do anything so at least the worst H/A's are somewhat improved (though they repeatedly recur, just to a milder degree) and honestly I might sell my R foot to sleep through the night once!?!

Most of all I just wish I felt like I had hope, that I would never have to ask Dr.Bragg for help again with headaches/shunt issues and that it was easier to communicate with Providers (as well to getting them to communicate).
I think I feel most discouraged b/c while Dr.Bragg always said something to the effect of 'we have options, I'm not going to give up' I admittedly still feel like we don't have as many options and it is sometimes really hard spending so much time, feeling so bad. I know (as I've written before) I look fine when people see me so that to while a good thing in a way doesn't exactly help getting answers.
I guess i'll just keep praying we can come up with something sooner. I honestly am not sure I can deal w these symptoms long enough to find out if we could get IT approved in an IRB (I kind of have my doubts but trying to be a little hopeful).
I can wish, right?
Anyways, sorry if this is awfully discouraging. I guess really I don't have to apologize since it is my own blog but it would be nicer (and is) when I am posting about something positive or even better when I am posting that something we tried helped!!!!

In any case, thanks for stopping by,
P.S: I've come to the conclusion maybe I need to go to Church everyday (we have service 1x weekly or the same service on Th night and on Sun). I feel restored in a way after Church but then my doubts resurface even though I know I should put my faith, hurts and pains to God.

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