Thursday, February 16, 2012

Between the lines, where there are no lines.

Wow, I had to go back and look at blog posts on here from 2011 to see what number this surgery would be for the VP shunt. Total shunt revision since ive had a shunt it will be 15 since 2006 with 3 of those in 06-07' (6 mo frame) and the other 12 of these now in the past 8-9 months since the end of last May with 1 in May, and I think the rest since august till now. 6 of these have been for the VP shunt and apprently 5-6 where for the LP shunt and 1 for the shunt infection/shunt removal/replacement. I know some may ask well when do you stop and say enough with these issues but the difference is my neurosurgeon feels she can help and that we have options and I see and feel  (and others including family and providers tell me) how improved it is when we do get to that good, sweet spot physically with a working-well shunt. Shunts are finicky and especially seem so in chronic disorders with MPS being no different. We will get to a place where we have a shunt that works well for long it's jsut a matter of finding the right fit essentially as terrible as that may sound. Because the pressure issues have done such havoc to my endocrine system (central hypo-pituitarism, affecting female hormones,  cortisol, thyroid, etc) and we see how these improve (although perhaps now the cortisol may not improve fully any longer) and then improve my autonomic issues (temp regulation like decreased and increased sweating, GI system functions much more normally with functioning shunt, and headaches go away completely, vision improves, nausea and vomiting go away it isnt a  hard decision to try and find a better fix to the shunt.- As they say you either have a shunt that works well or you have a shunt that never works until you just get to a good spot.

I get asked alot how I stay positive and what are my emotions really like underneath as I avoid talking about how I really feel about things. I dont really have an answer to this for people other than what sounds very cliched im sure (it isnt fair to take it our on someone else (though I am not perfect and do have moments) and that it could be worse.)  but I do believe in living 'one day at a time' as an old provider once told me not long after I was dx'd and I believe in asking for help when I need it but that I also dont need to tell everyone everything how I feel deep down. Thats just my personal feelings and it is bound to change day to day sometimes to. And honestly if I want to talk about how I feel i'll tell you but mostly id rather listen to someone else and as I told my psychologist the other day (whom  I hadnt seen since early last fall) if I could/when I can I much prefer to turn it around and ask other people how they are. In truth people read to much in to what I write or even say sometimes, for instance a small group of my providers have asked to be sent updates after bigger surgeries so I do this and certainly not a big deal.  A while back a provider said to me I seemed anxious in what I was updating after one of these surgeries and I knew exactly what she was talking about but was a little surprised/amused really that this person was reading so far in to a simple update. Believe me if im going to tell you how I feel about something it definitely isnt going to be in a group email to all of my core providers or ina group email to anyone. (4 or 5 providers get the update) I will tell you if I am feeling nervous or scared or whatever about something. It drives me a little crazy when people think that everyone has to get nervous or anxious about what is going on. I have a firm faith in God and I have a good group of providers that I work with and as well have a reasonably strong support network - my parents are amazing, I am close with my sister and my sister-in-law and I have friends who rally with support both in-person and online often and honestly my biggest inspiration is my 5 yr old autistic nephew. - His is a hard life between his autism classes, his split family and not the best relationship with his step-dad, adjusting to his little sister (whom he loves but get nervours by) and 2 different other classes 4 and 2 days a week and he still has a smile most every day and is funny as can be so why shouldnt I also try to have a smile everyday?  It is jsut me but for surgeries  unless it is a major surgery the one thing I will likely be a bit on edge (and rightfully so) is anesthesia and making sure that the pre/post cortisol replacement is given as I know how dangerous this is if not given and I know since you rarely have the same anesthesiologist everytime I have to be educated about why this is needed (although my nrsgn is great about it to). Like my Neuro-Endocrine dr said the other day I might sail through surgery with little problem and only have a tougher time recovering if the stress doses of cortisol werent given or my body in the one instance we dont do the stress-dose replacement cortisol may not be able to take it and my body may not recover and that can (another sounds to dramatic but is very true) lead to death. Does this sound dramatic? Sure! Should it? Yes! Between the airway issues and present cardiac issues and neuro-endocrine issues we have reason to be concerned but my drs have cleared me for surgeries and when they are fine (with pre-cautions in place) then I am fine as well.  So please people stop reading more in to what I write then is there, again if I am stressed or need to vent I will vent but otherwise I just am writing or updating pure and simple and for providers if you read this I know you've asked to be updated and I know some of you do read the messages post-op/post-big issues as you reference these but I also will not be heartbroken if there are some who do not, it doesnt hurt my feelings it simply is a mechanism to keep the core providers 'in the loop' and 'on the same page' as alot goes on with my care with very many different providers and not everyone gets all providers reports. I do request copies of all reports but it is still impossible to share these with everyone. If providers do read this then great, although I would hope like with the 'not reading more in to my words then is there' that you are not offended when I vent as  I am human and more than just a patient. Thank you!
**I was thinking about this post this morning (I wrote it last night) and do feel I should add a addt'l comment  - I met with one of my providers after ERT (at another clinic) as well as a girl who is also a Psychologist (newly so, congrats J!)  and if she is here reading this (we have become friends of sorts on fb and she also blogs about her own health issues) please dont think my comments about not talking about my emotions was aimed at you as it wasnt!! There is a big difference between your asking and someone in another specalty asking although in that other providers case I know to they just want to make sure their patietns are ok and thats a good thing I just wish people didnt try to lump everyone in to one category. **

Thanks for reading this - I know it's a bit off the beaten path but seemed like I needed to write it as it is something that like I said I do get asked about alot! (how do I stay positive) - Now if you where to ask my family they might tell you just to hang aroun a bit more and I wouldnt disagree I am stubborn and I do have a temper at times so sometimes my frustration gets taken out (not on purpose) on innocent people I love in my life. I do know to apologize though as apologies mean lots!
I'll update with surgery times here or on facebook and will try to update sometime fri after surgery.


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