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.

An Emergency Room Is A Hopeless Place

I would like to use this time to give my official review of the Dr.Phillips Hospital Emergency Room. While this means nothing to all of my readers who do not live in Orlando please do continue reading. It is the closest hospital to Universal meaning if you venture to Harry Potter world in the future and get zonked by an atrocious spell and don't have Hermione to give you a remedy you will be going to Dr.Phillips Hospital and you will wish you would have read this.

Point blankly, it's one of the worst emergency rooms I have ever been to. Dr.Phillips is a very wealthy area full of Lexus', Mercedes, BMW's and women who can spot a fake handbag from a mile away. Why is this even remotely pertinent? Well it sets up the irony that the emergency room also has a metal detector at the door. A metal detector run by an old security guard who is not even armed with a weapon and who I guarantee would not only not know what to do, but also wouldn't be able to do anything if some crazy looney tried to smuggle a gun in, nonetheless brandishing one.

I try to avoid the hospital at all costs. They're scary and make me all sad and lonely. . but things got to the point where I just had to go. I felt like an elephant was sitting on my chest amongst other things and quite frankly that's not the most comfortable feeling. So seeing as it wasn't just any Sunday night but Super Bowl Sunday and it was still in the first quarter I assumed there wouldn't be a wait. I mean we weren't far enough into the game that the drunken men who tried to do that "cool thing on youtube" were going to be there with broken bloody noses. And I have to admit I was partially correct. The ER was packed and while there was a lack of drunken shenanigan inducing men in football attire there was an abundance of inappropriately dressed people, annoying children running around and a man who kept disgustingly clearing his throat every five minutes. 

Now mind you the last time I was sick in a hospital was when I was under 18 and allowed to go to Arnold Palmer Children's Hospital downtown. It's really a magical place where every employee tries their hardest to make you comfortable, old Disney movies are playing in the waiting room and the rooms are painted in bright friendly colors with cool decorations. The biggest thing though? My mom was able to go everywhere with me -- triage, stay overnight in the room with me, and all of my tests -- but this time it was different. I was shuffled into triage by a Cruella DeVille looking woman who meanly said my mother was not allowed back. I then was met by a nurse who did not even attempt to hide that she didn't know what SMA was and thrown back into the waiting room and the stiff backed uncomfortable seats.

After watching Madonna try to pull of sexy dance moves, seeing the Pats LET the Giants win, and getting through half of The Voice I was done. I would rather be in pain in my comfy bed than sit in those chairs for another minute and then the typical butchering of our name occurred and we were whisked into the back room where a bitchy female nurse entered and proceeded to kick my father out. Because I am an adult and for the protection of my privacy I was only allowed one person back there. I am not a rude girl nor am I typically feisty but that flipped a switch unleashed the inner feisty chicita in me. She was followed by a rude financial woman and then a HORRENDOUS physician's assistant. I understand SMA is rare but I also know I have it. . but according to Ms.Kate I was a silly little self diagnosing child who had mono and a UTI. . I had ZERO symptoms of a UTI .  . The male nurse who also came to let us sign the sheet to leave so kindly stated that if anything were to happen to me it'd "be on you". So if I died it's my fault. Dad almost smacked him.

Three hours later the only thing we succeeded in doing was minimizing pain with morphine and getting a prescription for percocete. It was a fabulous time.

The moral of this story is if you are ever in need of an emergency room or hospital visit I would highly suggest Florida Hospital downtown. And for goodness sake if the one needing to be seen is under 18 take them to Arnold Palmer!

Ciao. xoxo.

PS. I'm obviously still alive after this ordeal. Just chug-a-luging along. High spirits and prayers that the Mayo Clinic gets back to us soon. (send prayers!)