First let me apologize for any sp and grammar errors in this post as I am unsure how to enlarge this screen (to make it more visible/less blurry) and well it is just that VERY blurry. =/
I called Dr.Bragg's ofc yesterday and talked to her partners nurse who in turn talked to Dr.Bragg + then Catie (nurse) called me back. She (Dr.Bragg) was just going to try calling this other dr she was wanting to talk to and told Catie to let me know she would call me back today (Weds). Ive not heard anything today so assume Dr.Bragg must be waiting to hear back from this other dr. which is understandable they all have busy schedules. I admittedly cant help but wonder though how come in cases like this our drs cant or dont have their nurses or secretary's let us know they are waiting to hear back, where they are in the process or that they will get back to us as soon as they can? I would sure feel alot better. =/
I get it, I really do and so I get this probably sounds harsh to which I dont mean for it to I guess I just feel so badly and so little energy and you sometimes just cant help but feel like your watching life pass by... By that I mean you dont really have the energy to do much, you dont feel great at all and your taking the max you can on the meds you have some of which are already being given in unconventional ways (IV Zofran, Ativan some nights oral)... and those arent always doing enough or anything though thankfully that isnt the case all of the time, just some of the time.
Instead you do those things you are committed to and reschedule the things you can, put off the specialists yet again that you can (Neuro-opthalm, Neurologist-for botox, Urologist for bladder symptoms, trip to Mn, etc) over and over and over again.. though some or many of the things are supposed to be done on a routine basis for maximum effect or in the case of Mn for study reasons. What can you do? To be perfectly honest you begin to doubt yourself, wonder if your depressed even though you know w absolute conviction your not but still it's still a nagging voice sometimes... Sometimes for me the hardest is how hard a simple thing like reading a book is, bc the words and pages blur together and so you spend more time getting frustrated trying to make out the words than you do reading the actual story line. Reading has always been a favorite past-time of mine, extremely relaxing and just nice I suppose bc you get lost in something less meaninful for awhile. I definitely would like normal vision so shunts please just work a little harder, please? Thank you!
Tomorrow's another day in which i'll pray I wake up feeling better, have a little more energy, feel a little more optimistic about all this shunt stuff and in general hope i'll feel a little more as if im letting people down a little less. With God all things are possible and so in him I must put my trust!
If you believe in it as I do please say a prayer I will hear from Dr.Bragg tomorrow. Honestly ive had a few moments tonight ive considered going to the ER but then I feel like what would that solve? We still wouldnt know what to do, id just end up (likely) back at UW and still without a plan so instead i'll stay here and hope for better days and answers and a call with some thoughts from Dr.Bragg.
Thanks for stopping by, my apologies if this seems melodramatic (or something), it's just how I feel,
Erica
Ps: Tomorrow Febr 28th is Rare disease Awareness Day, toast to a year of better answers, better treatments and more researchers studying these disorders - in my case especially a researcher(s) studying the CNS storage issues and headache issue in MPS would be wonderful.
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