Sunday, March 6, 2016

How to replace the seeming irreplaceable? Worry, Uncertainty, Loss

5yrs, it will have been 5yrs I've been seeing Dr.Bragg when she leaves her UW practice  and moves to AZ. :/
5yrs I didn't always trust her enough but 5yrs she never gave up and never stopped trying to help.
5yrs she kept learning about my disorder (MPS I) and 5yrs she worked with my Team in an effort I've never seen in another Neurosurgeon. 5yrs she believed me, became like family and became a Dr I truly respected, trusted and knew wouldn't give up (my trust may have wavered at 1st, yet (and especially ) she never gave up or lost trust in me and stopped trying to help me and I always respected her for this and  continually gave her high favorable ratings to my other Providers. I don't know if others ever did but many asked me if I though she would see other Patients  of theirs.
She was exactly what I needed for my Hydrocephalus and I can't tell you how hard this has been thinking of her moving, of her not being at UW when I have shunt or other neurological issues and as my Mom, who also really liked Dr.Bragg, said (in as many words) 'I can't imagine how much her not being there must scare you'  as my Parents know what it was like before Dr.Bragg came and my struggling to get someone to believe me and take on my shunt issues).- My Mom is right, I try to not think of it but as I've tried to fall asleep many nights I've fallen asleep in tears,  out of worry (whose going to take on and believe me and not give up like she has; is it going to go back to how it was before).
I know worry is wasted energy yet how do I not worry about an issue that isn't exactly my most stable?
I think sometimes about if say my Cardiologist ever left (unlike Dr.Bragg, in Dr.E's case seems less likely) there are 3 or 4 other ACHD Dr's in his clinic I get along with well and who he's  taught some about my MPS).

I HATE WORRYING And yet I am, alot. :/
Last wk, while in San Diego I was so tired and wasn't feeling good so between being busy w the few sessions I did attend (I didn't go to any of the mornings ones though several looked really good and there where others I just was flat worn out/not feeling great so I skipped) but what I did attend was a decent distraction topped with being around the friends who where also there (we often hung out in 1 of our 3 hotel rooms or the 1 night I had dinner with a former Pharma-BioTech friend and that to was very low key.
These where good, needed distractions.
I got back in to Madison Fri night in the snowstorm which was a peach to drive home in (normal 45mins approx drive took 2hrs) and Sat, my Bday ironically I slept, cleaned a little and slept through the rest of the day. Not exactly exciting  but much needed  and helped some.
The headaches and some cardiac symptoms have been kicking my arsh - sort of ironic given how many people said to me how good I looked in pics or they couldn't do what I was doing being at the Conf. so soon after the OHS. (which is a nice compliment even if I didn't feel great much of the time, I am the person that if I'm not puking keeps going, trying to not let MPS stop me to much).
If I never did anything when I didnt feel good seriously I'd probably do something once in a blue moon? I do wonder sometimes if that stops my getting  answers when having issues sooner but I just can't sit and feel bad about feeling bad.
I felt good for approx. 2- 2.5mo after we put the 2nd (VPL) Shunt back in,  up till we did the 3rd OHS and that I honestly think had to do w the surgery  and fluid affecting the shunt but who knows really. 

While wasn't perfect I sure accomplished more many days even while dealing w significant heart issues. Was nice and I pray so hard we can figure that out again before Dr.Bragg leaves. :/
Now? Now I feel like a sack of potatoes or something between the return of some of the heart symptoms (probably due to ridiculous fast heart rate despite the stupid boat load of heart meds I am on) and the headaches, oh the freaking headaches. They may come and go, worse at night but they sure suck! :/

Talking to my Mom Sun, we where talking about Dr.Bragg and her leaving come the end of May, my stressing about who to see (Dr.Bragg's said she'll help and won't let it go back to the way it was at UW prior to her coming BUT I worry, I worry a lot and have spend so many nights since finding out admittedly crying myself to sleep thinking about what will happen when she's gone ). I hate having to rely on someone so much. :/
I don't often let people see my emotions and often when people think they know what I feel they don't but lately my emotions are on my sleeve I imagine.
I am worried, really, really worried about her leaving and will there really be someone who gets what Dr.Bragg did that my hydrocephalus and MPS (which caused the Hydro) isn't a  'normal' presentation' or issues?
Worried and stressed about this is putting it midly and I wonder will it ever be like it was (currently is till the end of May) with Dr.Bragg where she actually cares, gets my issues and doesn't give up?
She's not your typical Neurosurgeon and I worry about this that I won't find another someone like her..
As Mom and I where talking about this the other day, my Mom asking questions about different Hospitals and Neurosurgeons (like where my former, 1st Nrsgn was) and 1 at Dr.Bragg's hospital but who is Adult trained not Pediatric who we liked but are uncertain could that Dr take my care or manage it for awhile till I potentially found either the Dr that's apparently coming late summer or just someone different? I don't know, have to talk to Dr.Bragg.
I don't think it would be good to see her Partner as he clearly doesn't like me and I don't in turn trust him so I honestly don't know.

I'll for sure talk to Dr.Bragg more when I see her in clinic and pray she can help me feel better before she leaves so we have time to sort a longer term replacement. I wish she wasn't leaving though!!! :/ Why do the good ones always end up leaving and my basically perfect team  now has to be put back together? 

In talking to a few of my Providers (primary dr, Genzyme Case Manager, Insur. Case Man. and Endocrine dr) have all said to keep them up to date and as my PCP put it "it is disappointing to hear, she's been a great Provider for your care and will be a huge loss, hard to lose and hard to replace her." - They all essentially said the same and none are certain how to move fwd, we all hope Dr.Bragg can help sort a good plan, with by some chance someone good to replace her. I pray she will stay in touch, she doesn't have to but to have her help and thus support maybe that would make it a little easier. All of these Providers above minus my PCP where there before Dr.Bragg so they know exactly how hard it was before she came to my Team.

I see her in clinic on Thurs so will try to update after and am praying she has some ideas. As she said "we always figure it out" so I hope this time to.

So nervous about this change and scared and uncertain and wish it was a bad dream - she's so good I don't want to lose her and I know for a fact I'm not the only one who thinks this and worries some.
I know God has a plan, I have  prayed repeatedly for God's grace as I continually have doubted him.

I apologize to sound whiny or whatever I sound, just scared I guess.


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