Wednesday, April 29, 2015

Do you ever wonder what they think...

Do you ever wonder if going on about life despite not feeling good affects the care you receive? I do and yet I don't know that answer.
The reason I've been wondering this is I guess b/c of having been in Boston the other week and with going to Boston/Providence this week (sort of an last minute trip) and wondering do drs. ever not entirely believe pts. (the symptoms they claim) if their drs. know they con't to try to stay busy despite? I don't know but do wonder.

I know with Dr.Bragg she seems to believe me (?) and tries to help me control my symptoms as best she can by tapping the VP Shunt and removing CSF (to relieve the L leg/spine nerve irritation) and headaches temporarily.
This removing pressure although the headache relief is very short lived, honestly in some ways the leg nerve symptom relief b/c it lasts longer is wonderful and I greatly appreciate her trying to help me.
I know without a shadow of doubt that Dr.Bragg would NOT have to do these intermittent/periodic taps and in all honestly the drive to Madison is kind of a pain in the arsh (2 separate trips this wk for 2 different reasons on top of 2 trips to Milw. this wk.) but at the same time well worth the temporary relief and especially given I am traveling this wknd.
So why do I wonder what drs. think about pts. and their symptoms and yet pts. continuing to try to live? Honestly, I don't know what has made me think of this, I guess maybe just b/c in some ways it has been a bit difficult of few days and between the headaches/leg symptoms and then the intermittent SOB and heart rate it all is a little wearing on a person..
This last wknd I was with my Mom, Sister, a friend of my Sisters and Zander garage sailing (sp?) and I am amazed sometimes how much energy I used to have or feel like I used to have for this sort of thing. I think I spent 1/2-3/4 of the time just waiting in the van b/c it is simply tiring and wears me out so. =/ Honestly I still had a good time and Zan spent Sat night., which he is not at all hard to have over so it was still a good wknd.
I was back at Sunday School teaching Sunday (one of my fellow friends and teachers is taking my class this wknd) which was nice albeit there to so tiring b/c while not at all hard it's just one more thing in a day! I wouldn't give this up for anything, I love these kids but it can get to be exhausting at times.
I am hoping this coming wknd flying to Boston and then the Marathon Sun in Providence is ok! I know i'll be without a doubt exhausted by the time I get back but is sometimes worth it. I am really looking fwd to meeting my 2 runners (both are from Tx) and seeing Jessi who ran at the Boston Marathon, was my runner the past 2 yrs and is also (obviously) on our 'Running for Rare Diseases' Team as she will be in Providence with the rest of our Team cheering to..
Thankfully my Cardiology Appt which had been changed from Thurs to Weds this wk in order that I could see Dr.Bragg on Thurs (she was willing to see me on her non-clinic day otherwise) was switched again to next Weds. Dr.Earing's Secretary had called this wk to see if that would work ok for me.
I am not entirely looking fwd. to this appt (not that 1 really looks forward to any appt!?) as heart rate has been slightly on the ridiculous side since we switched the beta blocker to a calcium channel blocker.
HR's have ranged from high 80's to mid-120's and at times like earlier tonight in the 190s. There is an app that came pre-installed on my phone (an android) and so I can track heart rate on this and even when I've not necessarily noticed heart rate being high/fast it is never below high 80's and often times has taken me by surprise being in the 120's.
I don't make a point to track heart rates normally but have been periodically over the past month for my Cardiologist given the Event monitor didn't go to well (reacted reallllyyy badly to the leads) and this app keeps all recordings in it's system. Given we started the new Calcium Channel blocker a month ago using this app seemed like the next easiest way to let my Cardiologist see what heart rates have been like w the new med and cardiac meds I am on in general.
If there is anything noteworthy to update on after tomorrow's appt with Dr.Bragg I will do so here or otherwise will update again sometime next wk. On a really side note it was 3 yrs ago a couple days ago that Dr.Bragg 1st put in the 2nd shunt. I know it's not been perfect and YES I wish the 2 shunts together worked better BUT I am grateful these 2 shunts together has been better than before!
Thanks for stopping by,


  1. Oh Erica, you are such an inspiring brave women, at times I would just want to throw in the towel. But not you, you move forward trying and hoping for the best outcome. Advocating and educating, and all along in pain. I admire you strength, bravery, and perseverance to keep on keepin on. Always praying for you E!

  2. Oops, its me Jamie for some reason it says Unknown.