I am truly grateful for all you do to help me stay alive and maintain as good a quality of life as possible. However – Please understand there is more to this process than what you see from your side. Please know when you order stuff for me I’m thankful you are on top of things but also dreading everything going into the order.

Every test involves multiple steps, not just the test itself:
+ Sometimes there is fasting.. sometimes it’s drinking crappy contrast
+ Almost always there is a needle stick somewhere in one of my arms and it’s up to me to remember which side is ‘next’
+ Most require someone to call and ‘review’ my medical history AGAIN & AGAIN… I even have an official appointment scheduled in one portal for one of these calls which was scheduled by someone else.
+ & tests with anesthesia – whole bunch of added calls beforehand asking about my medical history with anesthesia. These also require a driver who must listen to and relay the results later because I’m not awake enough when the doctor visits after.
+ For some tests the script goes to the location directly from the provider, other times I am given the script and have to remember to bring it.
+ Some tests are scheduled for me, others I have to call and make set up the plans – again, keeping track of all this somehow

Every appointment involves more than just showing up:
+ There are multiple confirmation texts & emails – some are reminders, some ask me to confirm – it’s a bit much
+ Then come texts &/or emails (sometimes both) with links to fill out forms prior to the appointment
+ The number of different portals I have requiring access to access my information is ridiculous
+ Throw in a specialist for a new issue – new appointment – new portal – new forms – new number showing up on my phone!

Every procedure has new and exciting extras to go along with those listed above:
+ A simple ’24-hr’ blood pressure monitoring requires wearing a cuff for 24 hours, having it beep & squeeze my arm every 15 minutes. If I moved during the test it gave an error beep and tried again before the next 15 minute test. Sleeping was “easier” – only every 30 minutes with no beeping? Last words from the person in the office when I left “just act normal and do your usual activities” – my interpretation… having to play freeze tag every 15 minutes is NOT NORMAL.
+ A 24-hour urine catch is just as it sounds – collecting for 24 hours – but keep it chilled (fridge or cooler, which is better, easier, less gross?) You are now stuck in the house for 24 hours, don’t make plans. But plan for this when you can return it first thing – keeping it chilled – there are limited times this works in a schedule – oh and don’t forget you have to find a time to pick up the empty container prior to being housebound.
+ The unplanned, ‘not usual’ side effects of a procedure are another story!
+ Near future radiation treatments will involve 2 visits each time (x4) – #1 – get a PICC line installed (a more internal IV) the day before. #2 being admitted to the hospital for the day to receive treatment and get the PICC removed. Then avoiding everyone for 3 days due to being radioactive = housebound again.

++++++ It is never just a test or specialist or procedure or appointment – this is a lot of time & effort just to stay alive.