Mayo Day 5 – Answers, Questions, and Heading Home

Done. Relieved. Scared. Confused. Excited. Got some answers. Have more questions. Have new questions. I’m Coming Home. Leaving Rochester. Feeling good.

And that’s not to say it was all sunshine and rainbows. It wasn’t. How could it be? It wasn’t as I expected. Had I known what to expect, I probably wouldn’t have needed The Mayo. So if you’re wondering what happened… feel free to read on.

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Mayo Day 4 – Code Red, Code Brown, and Bye Bye Wifey

We started out Day 4 with a trip to the Neuro-Opthalmologist. As the nurse was taking down my information, we hear “Code Red, Code Red in the lobby of the Gonda building”. Now cue the following conversation:

Nurse: Can you please confirm your birthday?
Liz: 4/16/82. What’s a Code Red?
Nurse: Oh, it’s a fire. And what are you here for today?
Liz: A fire? Oh I have vision issues. Are you joking?

She wasn’t joking. A few minutes passed and she asked us if we had heard the sirens. I had and there were a lot of them. As the fire trucks approach, we head down the hall to meet the doc. He asked me how I was doing and I said I was doing well, despite learning what a code red was during a code red. He asked me if I’d encountered a code brown yet. Once I realized this was a poop joke, I burst out laughing and relaxed to the point where I could ask questions I hadn’t had the guts to ask a NeuroOpthalmologist before. He eased my fears so I could be curious. If I could offer him one piece of constructive criticism, I’d say he was a little too calm, as I wanted to close my eyes while he was looking at them. I wish he lived closer to NYC. He was fantastic.

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Mayo Day 3 – Food Poisoning and Barium

The past 18 hours have been rough. At 1 am I woke up with the worst food poisoning of my life. Worse than the time when we got wasted in Mexico and ate Street Vendor Hamburguesas. This time though, I have no clue what caused it especially since Wifey and I ate the same exact things. 

I had a 7 am Occupational Therapy appointment that I canceled because I was delirious. I then had a 9:30 am Pulmonary test that I canceled because I was scared I would barf into the breathing tubes. Then I canceled everything else for the entire day.  Continue Reading →

Mayo Day 2 – An EMG, a Sweat Test, and 2 Pee Jugs

Day two was much less emotionally taxing than day one. I’ve gotten really good at getting tests done. I have yet to perfect how I handle the implications of these test results. That being said, I don’t have any results yet, so today was a good day… it even felt like recess at times.

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Mayo Day One – A Summary and a Migraine

Right after my introductory Mayo appointment today, I told Wifey that I felt like the Neurologist seemed skeptical of me. Wifey said she didn’t pick up on that at all, that the Neuro seemed perplexed… just like the rest of us. And so goes my typical new doctor panic attack. This is the anxiety-inducing,-woe-is-me,-get-me-out-of-here,-but-I-kinda-sorta-want-to-stay fear that grips me whenever I find myself in a new Neurologist’s office. 

As a patient, I continue to put all my hopes and fears onto the shoulders of these professionals. Close to home or far as hell away… it don’t matta. They have never met me or my special brand of baggage (and no, I’m not talking about my purple Samsonite suitcase). They’re new to me too… their baggage also a bit abnormal. I mean check out her hazardous materials container… creepy!


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I’m in Rochester and I Have Million Dollar Idea

Million Dollar Idea #256 happened upon my brain en route to Rochester, MN. After flying the wrong direction (to Raleigh-Durham) and then flying back North and further NW and an hour and a half blustery snowing shuttle ride, I can’t believe I’m actually here! I’m in Rochester, Minnesota! Insert a photo of my head dancing on a cartoon body doing the jig right here. 

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I asked my fellow CIDP’ers what their Mayo Clinic experiences have been like. I fear I may need to cancel my trip after reading BJ’s account:

BJ: The town of Rochester is mind-numbingly dull and there’s not much to do (especially if you’re carrying around your gallon specimen-collection jug)… 


TGWTPC: What is this specimen jug you speak of? Sounds horrifying! 

BJ: While I was at the Mayo, they collected every drop of urine that I produced over about three days. I’ll spare you the details, but as you can imagine, I ended up carrying a very large jug.

TGWTPC: I’m NOT doing a specimen jug! No way no way no way! Was it clear?

BJ: It was big and orange and practically everyone is carrying one. I kept mine in the car when I went out in the evenings, but I saw plenty of people who just brazened it out. There’s no dignity in being sick, I’m afraid.

TGWTPC: I think I need to cancel this trip.

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… to the Mayo Clinic. T-minus two weeks until I get poked, prodded, and who knows what to within an inch of my sanity. And I can’t wait!

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