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Kate Update: January 5, Mayo Clinic, Day One

January 5, 2010

Today was my first day at Mayo. It went well. I have an unusual doctor, with a “bedside” manner unlike anything I have experienced previously. Despite his odd behavior, my doctor seems to really know his stuff. He has me on a new five-part regimen which consists of drinking an inordinate amount of water (there’s a funny story here), consuming twice to three times the daily recommended amount of salt, a few specific types of exercise, and two new medications.

Tomorrow morning I will begin the first medication, Midodrine, which they want to raise my blood pressure. After four days on of this, I will begin a beta blocker to lower my heart rate (and my blood pressure, as I understand it). Dr. General Hospital says these medicines will make me “feel different in a week,” and when that happens I should call him so we can move onto step two.

He is waiting to look into the cyst until they see how many symptoms respond to these medications. If I don’t “feel different in a week or so” they will switch me to a neurologist, since the symptoms would most likely be more cyst-provoked than heart-provoked. (I really do not want this to happen.)  As to just what “feel different” means, I’m not sure. But he says I will know, because I likely haven’t felt that way… ever. Sounds wonderful. I am looking forward to it.

At this point, I must add to my personal notes.  I cannot remember relating the story of my cyst to my readers.  Long story short, I have had ongoing dizziness, depth perception issues, EXTREME migraines, tinnitus, loss of extremity control, and more.  Though they attribute most of these symptoms to my Postural Orthostatic Tachycardia Syndrome, they feared the incapacitating headaches were caused by something else.  They were right.  After an MRI they found a cyst in my brain.  Though these cysts are common, the size of mine is quite uncommon.

Now for the amusing and/or noteworthy highlights from yesterday…

In all seriousness, Mayo is an impressive, and humbling place. Everyone from the shuttle driver to the bathroom attendant were exceptionally kind and jovial. The buildings are lovely, the finishes are consistent with a high-end hotel. The exam rooms are setup like nice offices for the doctors… nice carpet, nice desks, and enormous windows. They have they typical medical contraptions in them, but they make you feel comfortable and they make the doctors seem even more professional. The view from the exam rooms is definitely not your everyday hospital view.

On the lighter side, my doctor, whom I refer to as Dr. General Hospital, wore very low V neck scrubs with plenty of chest hair sticking out the top. He thought himself wonderful, I surmise… and he asked questions like:

  • “You do what for a living?!”
  • “You seriously went to college to study construction?”
  • “Why the hell do you live in Arkansas?”
  • “Why were you born in Salt Lake?!”
  • “What is your husband like?”

All unexpected, to say the least. He also asked if ever worked in the medical profession… like five times. Why?  Because we was totally convinced I have, at some point, had H1N1.  In fact, he said that’s likely what got be into this POTS relapse.

He kept telling me I was “funny” and had a dry sense of humor.  To be honest, it kinda creeped me out.  Necessary Sidenote: My mom and I, combined, were below the average age of the patients in the waiting room. I kid you not. I am sure he hasn’t seen a non-octogenarian (or septuagenarian or the like) in months. He must have found my relative “youth” (or immaturity) refreshing and/or amusing. I found him a bit bizarre.

He explained my health issues like this…

  • “Your brain isn’t telling your blood pressure and heart rate to get along. It’s like your blood pressure and heart rate haven’t talked on the phone in a while. Maybe your cyst is cramping the style of the part of your brain that maintains the connection.”
  • “Those headaches are your brain thinking it’s dying, but just for a second. It’s not getting oxygen when you stand, so it b@#&$!s at you for the rest of the day to remind you what you did to it. No medicine can fix that. The headaches will be the last symptom to go as we get this fixed.”
  • “You don’t look crazy. Are you crazy? No, you can’t be crazy, you’re too funny. Are you crazy?”

And so on…

Anyway, I am getting answers to my questions. (Although I swear Dr. General Hospital only asked about my degree so as to use the sort of language he thought would make me comfortable. A bit misguided.) And I am optimistic his recommendations will help me feel “different,” in a good way.

Kate Update: January 4, Arizona, Mayo Clinic

I’ve pondered how best to relate the events of the last month, and have decided to be most open and share the notes I wrote for myself , while in Arizona.  These will read a bit more like a journal than you may be accustomed to, but I make no apologies.

January 4, 2010

Tonight Mom and I flew to Phoenix, via Denver… an airport I love.  Loads of open space, lots of light, and plenty of room to sit, on my butt, along the people mover.  I ate a cheese pizza from Pizza Hut.  It was good, but I hate that I ate it.  So quickly, too.  Why?

There was some confusion regarding our seats, so we asked for an emergency exit row.  We got one, and ended up in the first economy row… you know the one with nothing but six feet of open space in front of you and endless opportunities to watch flight attendants stare back at you?  The one so close to the door that you notice the gap between the door and the wall of the aircraft and the girl next to you asks, “Does that look closed to you?!”

Keeping Less, Living More, Part 1: Breakthrough

Since I returned from vacation on July 5th I’ve been a nearly-crazy-Kate about getting rid of things.  Though I am not sure what triggered my new clarity, I do know I can no longer handle excess stuff… tangible stuff, paper stuff, emotional stuff, unnecessary stuff.  To be frank, I can barely handle the necessary stuff.

It started in our master bathroom and spread to our master bedroom and then to our closet.  I removed unnecessary items from the shower as well as the countertop, streamlined under-sink storage, recycled empty bottles, and disposed of a large bag of trash.  I corralled our dirty clothes into six sorters: whites, darks, brights, jeans, towels, and miscellaneous, and removed them from our master bedroom.  I touched every item of clothing in our closet and removed a quarter of my clothes to donate to the local thrift store.

As this organization obsession began to extend beyond our home and into my workplace, I felt out of control.  The motivation I felt to simplify my life and our home was real, but I wanted to identify its source.  I read from books I love, listened to music, stayed up thinking, talked with Daniel, debated with my mom, and came up withsome ideas:

Chronic Pain and Cortisone, Part 2


If you have not yet read Chronic Pain and Cortisone, Part 1, please do so now.

When it came time for Dan to head to the fitness center, for my second post-cortisone trip (6 days after the injections),  I chose to stay home and enjoy my still-increasing soreness.   But I felt a bit guilty and thought I should at least do something to continue forming a habit of making fitness a priority, so I vowed spend some time with wiiFit.

And I did.

For all of 60 seconds.

I don’t know what happened, but standing on the wiiFit board aggravated my back almost instantly.  It was all I could do to gut out the body test… 100% of my pain returned, instantly.  I tried to ignore the discomfort and play some games, but I couldn’t see straight.

You know the feeling…

Chronic Pain and Cortisone, Part 1

I started writing this post, but I quickly got sidetracked by something that completely changed what I have to say.  This will be a two part post.

Last night, after months of babying my back, I decided to head to the gym with the guys.  You see, my husband meets a friend to workout every night at nine.  And I love working out at nine.  In fact the whole tradition was my idea.  Well, the latter half.  I worked out nearly every night at nine during my summers home from college.  It did wonders for me.  It helped me turn my freshmen 15 into the sophomore sans 10.  It strengthened my relationship with my roommate.  And it reminded me that fitness and fibromyalgia could coexist. The whole working out bit was strongly suggested by our doctor, concerned about Dan’s high cholesterol .  Although, I am also a fan of the working out bit, considering I want my husband to live as long as possible.

Anyway, while they guys focused on cardio, I heeded the advice of my family doctor, my chiropractor, and my orthopedic doctor (Is there a one-word name for those folks?) and focused on my upper back and arms.  And like a true exgymnast/athlete, I overdid it…