03 April 2012

Mayo Clinic Adventures

Exactly one week ago today I was getting my blood drawn at the Mayo Clinic is Jacksonville, wanting coffee, and trying not to cry because I had just found out that our “quick visit” was turned into a three day trip full of tests. Contrary to my last post about my visit to the Dr.Phillip’s Hospital, I actually had a really good experience at Mayo. The patient rooms at my gastrointerologist’s office were FABULOUS. You sat and talked to the doctor on a couch, they had a little changing room for you to get into an awful outfit, and there was a big window which looked out into the fountain and trees. Relaxing-ish.

I do have to vent about barium and how atrocious it is. I had assumed (dumb move) that after my last batch of tests in Orlando I would never have to drink that nasty chalky liquid again, but I was mistaken and got to chug two fabulous glasses of it. If you’ve ever had it you know my pain, if you haven’t, well, it tastes like chalk. On top of that I am a baby when it comes to any medicine or foul tasting drink, I have been since I was a wee little one, and it shows.

I hate that because I am twenty all of a sudden I am supposed to be feeling-less or at least portray myself as so. It’s nearly impossible for me. Mom was allowed to go into more areas than she was at the Dr.Phillip's Hospital but I was still left to fend for myself once the tests started. One of the doctors instructed me to take two “big gulps” and you would have thought I was being given tequila. It was a tiny sip, gag, and another tiny sip, and tears. Being twenty means nothing, I’m still that little five year old who has her mouth clenched shut to the awful drinkable medicine I’m supposed to take.

A word of advice for anyone ever going to an appointment where you could possibly be kept. . . or have to take tests. Wear comfy shoes, and by comfy shoes I mean comfy after a long amount of time not just an hour or two. We hadn’t intended on staying so my bag was packed with a bathing suit, pj’s and one outfit along with my gorgeous gold sparkle Lindsey Phillips flip-flops.  During one of my tests in which my colon refused to accept the barium I was instructed to pace a tiny portion of a hallway from 9 to 1.  In my head I was cursing those shoes with words only a sailor would use. I would also like to warn anyone with a short attention span and knack of twirling to keep yourself amused: just because you’re pacing a hallway and haven’t seen more than 10 people in an hour you do NOT have "permission" to start twirling down the said hallway to try and amuse yourself. That is when the doctor will randomly come out, will yell out you because it’s “dangerous”, and threaten you could have to redo the test because “twirling isn’t your daily activities” and therefore not mocking daily ongoings of your intestine. Just because I’m twenty doesn’t mean I don’t twirl on a regular basis, doc. Give me a glass of Moscato instead of barium and I’m regularly twirling around.

The nurses were all absolutely fantastic (the doctors were too). They sat and talked to me, joked around, and were sympathetic. One day I was getting a migraine because I hadn't had my coffee, the other it was the barium, freezing rooms or rolling veins -- in every situation they tried to make my experience as smooth and enjoyable as possible and it really made a difference. On a more serious note about a diagnosis SMA is one of the hardest things to definitively diagnosis. In addition the fact that I am skinny, and always have been, doesn’t help to get a definitive diagnosis hence the three days of tests. We’re waiting for the results of a last test to figure out what we can do but minus some bad nausea and a wavering appetite I'm doing pretty well.

Ciao. xoxoxo.