Thursday, April 13, 2017

Is it really have to be this hard? Shunt frustrations

Why does life as  a Rare Disease Pt have to be so difficult? Why do some Specialists who are good at their fields have to be so dense to the not straight fwd/not as simple' aspects of rare disease issues?

I feel so frustrated, actually distressed in a way this past 2 wks. I do not normally experience anxiety much and I have to say I feel distressed. Frustrated that the answer is so evident, the NP got it, Dr.Bragg I think (?) believes its shunt issue (she originally stated she felt a revision was needed not sure now after she's seemed to talked to my Nrsgn. Regardless the shunt taps where very abnormal. My Primary dr. wondered how it isn't clear (that its my "normal" pattern with shunt issues) but this Neurosurgeon seems to have no clue?
Why can't he understand that in my MPS we often have difficult Hydrocephalus that isn't very straight fwd. Yet why also can't there be/or isn't there more drs in the MPS Community who treat this sort of issue-why isn't there more Neurosurgeons aware? Is Discouraging waking up every day feeling like this and little hope. =/

Between this shunt issues, the pressure being so typical to me when shunts not working right (pressure worst at night, early morning, slowly improves as the day goes on till finally about dinner time I feel better albeit imperfect). And then the Insur.-Infusion stuff. It's so tempting to me to just drop my primary insur. and use Medicare as primary thus I wouldn't be as stuck re where I could infuse at and I could stay at FMLH. The local community hospital has no business doing this infusion and the drive to my Primary (whom I really like) is more difficult than is my drive to FMLH/Milw.
 Neurosurgery wise unfortunately there is no good option, the Peds Neurosurgeon that works with mine now (replaced Dr.Bragg) feels the same as my Nrsgn does, that there's nothing he can do to help. Dr.Bragg of course isn't local and for that matter apparently can't treat Adults at her new hospital so seeing her in AZ isn't even an option. That makes me sad (wouldn't be ideal even if could but atleast I'd have an option).

I JUST FEEL DISCOURAGED AND ANGRY AND UPSET. Why does it have to be so difficult?
Sorry to basically just vent,

                     Reminder to myself. There has to be someone who can help, who will help, right? =/ I pray God leads me to whoever this is. =(

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