Thursday, July 19, 2012

Live radio interview, Met new PCP, etc..

Today I did a live interview on BlogTalk Radio almost entirely on MPS Awareness: If this link doesnt work go to my fb page:

7/12/12 - week of
Saw new (potential) PCP today and while I was really nervous (which sometimes I get and sometimes I dont with providers and especially new providers) I really liked this docs approach and she seemed genuinely interested and even despite her knowing I may still chose the other PCP-Family Practice doc I am also 'meeting/interviewing' she gave a few potential suggestions to possibly improve my care. She didnt want to just implement it without my talking to my Endocrine dr as she commented "I dont want to step on any toes" which I really appreciated her not wanting to just do something but being interested in potentially improving my care and she commented that if I do chose her as my PCP she would in the future be moret than willing to reach out to pertinent specialsits regarding my care and helping it be more fluid and/or if she had questions or possible suggestions which I like that. In this case one of the suggestions that pertained to my endocrine dr (who is one of the drs that was approved as an out of network specialist but in-network auth.) was potentially having a 'rescue drug' (not entirely sure what that is) for times when I would normally take an increased dose of the cortisol-stress dose replacement but may not be able to keep it down such as if nauseous/throwing up.  Cortisol replacement is something I take 2x's daily to replace the cortisol my body is not making properly and helps control many of the bodies normal functions including reactions to little and big stresses and is a drug replacement that is given in a much higher dose by IV before any surgeries or procedures as well to help the body cope and without the replacement the body can have severe issues. ----*Update to this my Endocrine dr is prescribing and having me do a class at her hospital on stress dose emergency Hydrocortisone (solu-cortef) replacement which is given by IV at times when I wouldnt be able to keep down the increased hydrocortisone dose. My insur is being ridiculous about covering the solu-cortef injection (nice, huh!?) so that is being worked out and I set up the class for 2 weeks from tomorrow to give time.

I think the biggest but maybe not big thing is for the past few weeks (maybe longer?)  is losing my balance even when I am just standing in plaec or walking but doesnt happen bc I am dizzy episodes or bc I tripped over something. Its very unusual.. The other day I was at the local raceway and stepping over one of the seats (no back and cement) to get to the neck seat which was plasticky and had a back on it and anyways my Dad, sister and brother-in-law where going to sit in front of me and just out of the blue I lost my footing for no apparent reason and almost toppled my Dad who is a big guy at 6ft some inches and over 200pds - needless that was comical and a bit embarrassing.

The LP shunt is rubbing on a nerve or something in my low back which is quite uncomfortable and worse w any amount of standing and laying on my stomach - and also well causes pain right along my L side which is actually not the side the shunt is tunneled around but my nrsgn had thought it had something to do w the spine she thought the catheter was sitting on.  I am hoping this improves as it goes around to my left side and ooh fierce! I see her in 2 weeks and my niece will be here so will find something fun to do in Madison likely before w Lis. :) Hopefully will be feeling ok the week Lis is here, right now I have really good times and H/A's are mainly worse at night or mornings and improve after a few hrs and otherwise just vision ebbs and flows.

Cardiac med I got permission to increase the beta blocker for breathing issues so hopefully does the trick asd at the 1/2 dose it actually did make a difference to.

The only other thing is insurance, lots and lots of time spent on insur stuff (ooh joy)  and trying to figure out a way to stay w my current Pain dr who is trying (for the 2nd time) to become an in-network provider w my insur plan and today told me she wanted me to stay w her, that we have made such good progress together (so true!) and she still had ideas + she would miss not having me as an insur. I am praying so hard something works out!! She is AWESOME and one of my best providers on top of has ALWAYS trusted and believed in what ive said be it the shunt or other symptoms - never any second guessing which the same cant be said for all of my providers though now I have a pretty great bunch. :)
This is about it for now, if you listen to the interview or even parts of it let me know what you think - not my first radio interview but first one live!


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