Thursday, June 25, 2015

"I'm ok.. but i'm not ok.. and that's ok"... sometimes it's so hard; wishing for what I can't have.

This has been a really busy week, not a bad week necessarily just a busy one but admittedly there have been many moments where I've wondered more than a few times why, just why did I try this single shunt and the 1st valve we tried last month vs going back to 2.
I still know I'd have regretted it if I had not opted to try the 0 pressure valve and I guess I truly did believe if it didn't work we'd go back to the 2 shunt system which albeit imperfect atleast I felt some better and I keep on wondering, like as in wondering - my mind in a broken record what if we'd tried the former TPL Shunt in the current LP location and then also placed the VP Shunt could it/would it have been better? I think it would have been and if it where possible could kick myself, I so, so regret this and hate how it is now.
I hate the way I feel and how in many ways I feel worse then I did before. Hell I'd take the way I felt before but I really do think if we had a shunt draining in the lumbar space and then the VP Shunt we'd be in a better place. Ugh. =/

I know Dr.Bragg is really against going back to the 2 shunt system which admittedly I get (sort of) but I also so wish we could try. It amazes me, just simply amazes me how many of my other drs have said to me including my Pain Mngmt dr today, who wasn't aware of what exactly we did last month that she (and others who've seen me in the past wks) can see something is different and can see in my eyes when I don't feel good (I have no clue what it is about my eyes? Have always wondered this as more than a few Providers have said the same at times over the yrs).
Non-the-less life has continued on, both other medical stuff and other things/other plans which atleast those are fun things w friends and hanging out w the VBS kids 1 day this wk.
Life has to go on, whether I always feel like it or not is literally 1 day at a time sometimes. I have my moments of sort of pity part I guess of sorts when I am alone bc I feel so so frustrated about all of this and why can't I just feel better, why couldn't we just go back to the 2 shunt system and try it with the 1 in the LP Space but for whatever reason I guess it's not meant to be. =/ So que sera sera, right? Doesn't mean I don't want to take a drill and make a hole for CSF to leak out myself though without causing the extreme irritation to mine spine nerves that occurs w just the 1 shunt.

I know Dr.Bragg was planning to talk to her Secretary the other day re coming up w a plan so I'm not sure if she has but will call I guess about that tmrw (Fri) if her Secretary is there (I can never remember what days she is) or otherwise on Mon.
I know my Parents want my Sister and I and the kids to go camping w them for a night in a couple wks (actually I hate camping) - they have their tow behind and my Sister and I generally do tents and I sleep on a lay out chair in the tent that sits up or in the back of the truck.
Honestly sort of dreading it w these headaches which are made even worse at night but I know the cardiac cath-EP (Heart Rhythm study and ablation) is scheduled for next Weds and given I don't know a plan yet it's not like if we did do a shunt valve swap should that be what Dr.Bragg decides is going to happen next wk.
Ugh!!! I just freaking want to feel good!!! I think I could sort of like the camping thing given it's just a night if I knew I wouldn't pee 10,000x's throughout the night due to the shunt (have no idea what it's about but no doubt in my mind it's a shunt thing) and wouldn't have the headaches/symptoms!
Just cross your fingers I guess no matter Dr.Bragg was or is able to come up w an idea to try.. And either way i'll survive for the kids sake sleeping in a tent overnight for a night I guess. I am totally not an outdoorsy sleeping kind of person!
In any case, will update once I know any details from Dr.Bragg, if you would say a prayer she is able to come up w a better plan and God's wisdom may be with her as she tries to figure something out. Please don't think this update is anything against Dr.Bragg, it is not, I truly like her and appreciate her and trust her I just simply feel frustrated and being perfectly honest here wish we could turn back and go to before. Now it just feels like what we had before the 2 shunts, like 2 or 3 steps backward vs. progress.

If you would say a prayer for next weeks Cardiac-Electrophysiology Study that my Team may have success, whether that be just mapping the heart or whether that be mapping the heart, finding an arrhythmia and being able to potentially ablate it. The study is being done under a form of anesthesia, conscious sedation and several catheters will be threaded up my legs through the groin to reach the heart to map the electrical (rhythm) system + if needed electricity can be given through to the catheters to rid the heart of abnormal signal pathways if any are found.
This humid weather is really difficult on breathing so any progress we could make towards improving breathing (and thus stalling mitral valve replacement) ;) either through the EP Study or if we have to the new med would be great!
In any case will update soon,
Thanks so much for stopping by,

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