Hillary Ann Rollpole and reality checks

So, it has been a little interesting around here lately. I never really know what is going on and neither does anybody else. I thought the PICC line thing was settled then it wasn't then nobody knew anything and everyone's brain fell out through there nasal cavity it all was just crazy. So I said I give up just do the normal IV's good luck they will blow a lot so dear nurse you might want to think about moving in. I finally get a call that says they they found a surgeon who might be willing to put in a port but per protocol they see you for an appointment and then schedule the surgery from there. Well, problem #1-- I do not want a port in my chest I want a PICC line but I went ahead and made the appointment since I knew a nurse was going to come out and do a regular IV in a couple of days anyway so we will do those until I know more and see this surgeon.

When the nurse came we were discussing it and she got the IV in on the 2nd try (miracle) and got me all hooked up and then called my doctors office to see if she could learn what the deal was. She "just so happened" aka God moment to call right when my Dr was standing near the phone and the MA on the phone let my nurse speak with the Dr directly. I couldn't really hear the conversation but when she got off,  the nurse said now I didn't know this part and I know you do but she said to put it delicately since it takes awhile to sink in; she is not refusing to do a PICC line she wants to do what is in your best interest and because your BP is really low at 90/70 which is an obvious sign of dehydration and your body has already shown us that it cannot keep itself hydrated it will need help. Your condition is not like a 3 month deal if it was then the PICC line would be perfect but since it will be something you will have for your whole life she wants to do a port because they can stay in forever with maybe a replacement needed every 10 years but you will probably need hydration therapy your entire life. Given that; the port is under your skin and as long as it isn't accessed you can swim and shower and live a  more normal life than with a PICC line that we would have to change every 4 months. SIGH. I am now going to introduce you to my new roomie Hillary Ann Rollpole: She takes 8 hours of my time twice a week and beeps at me really loudly when she is angry. I feel like I might have to kick her out one of these days but we will just have to see.

REALITY CHECK. I do know that my disease will never go away but just to hear it put that  way makes it real and I am still pretending it is fake. One of these days It will become reality but I am not there quite yet. The nurse explained that if she was me she would do the port and the reasons why and I completely agree with her so I have a surgeon consultation on Tuesday and then the surgery to have it placed will occur after that. Here is a non graphic pictorial example of a port so you have an idea of what I am referring too: When the port is accessed it is the same as what is above so Hillary gets to stay!