Imagine my surprise when, after explaining why I was calling, I was told, “[Dr. GH] is no longer with Mayo Clinic.  We are working to identify who will fill his role, and will contact you when we do.”

Oh.  Right.  Okay.

Wait.  What?

He’s gone?

No more hairy chests and bizarre questions?  No more medical explanations involving YouTube and unexpected analogies?

And then, of course, I began to wonder about things that actually mattered.

What if they don’t get me a new doctor in time?  What if my new doctor wants to change my regimen?  What if Dr. GH had it wrong all-along?

Luckily I didn’t have long to wonder, as I received a call within 48 hours informing me I had an appointment.  So, after a few tweaks to the date and time of my appointment, I began my list.  The list of questions I want to be sure to ask my cardiologist.

I suppose it isn’t actually a list of questions… it’s more like a collection of various notes I’ve made for myself over the year since I last saw my Mayo doctors.  Some bullets are significant, and some border on silly, but they all matter to me.  I get the undivided attention of doctors at the top of their field just once a year.  It would be unwise not to ask questions and make the most of this tremendous opportunity.

After wrapping up my list (for the time being, since I add items frequently and up until the doctor walks in the exam room), I moved on to establishing my neurology itinerary for late-December 2011, which proved to be a challenge impossible due to Dr. A-Z’s complicated holiday vacation schedule and overwhelming popularity.

I will spare you the details, but I can say… from the time I called to schedule this trip these trips to Mayo Clinic AZ, I knew things would be different.

More on just how different it’s been later this week.

Until then… How do you prepare to head to a doctor’s appointment (big or small)?  Do you write lists?  Take a friend?  Remember to bring your medicines?  What’s the best advice you’ve received?

For starters, I am freezing.

“Freezing in Arizona?” you say?

Yes.  It is December, after all.

Although, to be fair, I got married on this exact day six years ago (Happy Anniversary, Danny!) and it was 70+ degrees.

But, stick with me. Please.

So it’s December.  And since I arrived, AZ has been cooler than home almost every bit of every day.  Plus, it doesn’t help that I am almost always cold.  (I’d say I’m just weird like that, but since I like to imagine you are like me in that regard, I won’t.)

Are you like me?

Anyway, yesterday I broke down and bought two more long sleeve pieces I can layer with the wardrobe I packed.  These two new items will make a significant improvement in how warm I feel… especially when paired with one of the four scarves I brought.  (I NEVER leave home without a scarf.  Even in the summer.)

I also bought these.  They are delicious.

Too delicious.

But that’s not the point.

Since I make a point to begin new traditions, it only makes sense that I make a point to continue those new traditions during future visits.

So, for this round of Mayo Clinic trips, here’s the status of my must-do tradition list:

• dine at Kona Grill Done, with my SIL and her littles.  I even left my debit card there.
• make at least one trip to MoJo Yogurt
• people watch and eavesdrop so I can remember this trip vividly and take it all in
• FaceTime with my sweetie
• make and eat lots of homemade sandwiches Although, this is a sort of ongoing goal.
• sleep
• visit Pro’s Ranch Market as often as possible for chicken taquitos and  aguas frescas (What’s your favorite flavor?)
• spend some quality time at TJ Maxx
• stretch every morning AND every evening
• consume bagged lettuce to my heart’s content I’ve already restocked once.
• Christmas shop… for 2012
• take pictures Who am I joking?  I do this all the time.
• read
• appreciate a few weeks of Arizona weather (don’t worry, it usually improves in January)
• watch sports
• buy plane tickets for summer vacation
• spend quality time with my in-laws, nieces, and nephews Again, with the ongoing bit.

And, these aren’t traditions, but I’d like that to change:

• take Daniel to Oregano’s for a late anniversary date
• actually respond to people who call and/or text

Here goes… I will keep you posted.

So, usually, I don’t explain myself.

I get some sort of perverse pleasure out of leaving people guessing.  I am afraid I really do.  It’s like dressing the elephant in the room in a safety orange vest with reflectors and flashing lights.  And, it keeps me in control of the conversation.  Which, frankly, is exactly how it should be when it comes to my health.

Am I wrong?

Having said all that, I have learned it is important for the folks near me to know about my health.  You know… in case something goes wrong and I need help.  And, I suppose, as I discussed here, overcoming my pride is a process that requires I practice often, and with consistency.

Now, don’t misunderstand.  I by no means tell all.

I am guarded.

Extremely so.  In many areas of my life, not just in regards to my health.

There are plenty of those awkward moments when someone asks where I’ll be for however many weeks I’ve planned to be away from work, and all I say is, “Out west,” or “In Arizona.” and just keep spelling “a-w-k-w-a-r-d” until the awkward stops, the topic changes, and/or they walk away.

Again, like I said.  I just love dressing up that elephant.

But, really?  It’s a need-to-know.

My trip began very early this morning (we’re talking before 4:00 am), but I landed at PHX before 9:30am.  My second and final flight of the day was filled with a high school girl’s basketball team who happened to predominantly be made up of first-time flyers… who cried.  And cried.  And cried.  And cried.  They were sweet girls, but they were oh so frightened.  It broke my heart.

On a happier note…

Along the way, I picked up these beauties, to take my medicine with.  The three delicious maple syrup shortbread cookies (adorably shaped like maple leaves) were worth the $5.99 I spent.  (Do the math?  That’s essentially $2 a cookie.  And they weren’t more than 1″ wide!)

I digress.

My cardiology appointments are in the morning.  Look for an update tomorrow.

Oh, wait.  That’s not where I meant to go with that.

It’s that time of year when I celebrate the birth of Jesus Christ, decorate with evergreens and lights, consume delicious treats, (travel to) visit with family, and prepare for a trip to Mayo Clinic.

You know… ’cause it’s December.

And that’s how we do.

I pray this little blurb finds you healthy and happy and enjoying the holiday season.  Thank you for your love and support.

Details to come.

Research casts doubt on link between chronic fatigue, virus | Deseret News

I’d say I’ve always been a skeptical about the seemingly-simply virus explanation, but truth-be-told, I’m skeptical about most  explanations I’ve been given.  While I’d love to be able to simply explain my chronic health issues to family members and friends, I have yet to use any one explanation… I usually list three or four theories I’ve heard over the years.  And, frankly, I am likely far too proud to subscribe to one theory only to be told years later I’d been so set on said theory I missed the truth.  Is it just me?

Now, this is likely naive of me, but I can’t get over the fact that 17 studies have knocked down the theory.  Is this as high as it seems to me?  Maybe we can move on to researching a new theory, instead of just debunking old ones?  Based on the incredible experiences I’ve had over the last two years, I imagine the medical world could accomplish a lot in 17 separate studies.

Here’s something you may not know about me… while I was in college I participated in a clinical study relating to fibromyalgia, chronic pain, and pain tolerance.  It felt like something small I could do to help further our cause toward understanding, and hopefully a fix.  (I’d say cure, but the connotation seems so heroic that I feel like maybe it should be reserved for cancer, AIDS, etc.)

Anyway, you should read through this article, as well as those to which it links.  Let me know what you think about the road to uncovering the why behind our health issues.  And, let’s hear your wild ideas about what causes chronic fatigue (or chronic pain).

It’s just after 8am on Saturday, my alarm went off nearly three hours ago, and last I checked I am shaped nothing like the abnormally proportioned toy to which I refer. I am not wearing any makeup, my hair is wet and heading toward unruly, and everything I am wearing is a shade of black or gray (none of these things are uncommon, btw). Needless to say, I will not be winning any awards for style or beauty. I am just here to talk about car travel.

Today Daniel and I are taking a day trip with my folks. Although my parents have a very comfortable car, when we arrive at our destination I will inevitably be feeling like Barbie. Is it just me? Do you know what I mean?

You turn to open the car door, and you crack. You step out of the car, and you pop. You stretch to the sky, and your spine sounds like internal fireworks. Maybe, like me, you do a few squats or pull a foot to your butt, and your knees seem to snap through the motions, just like Barbie legs.

Luckily, I feel comfortable while I am seated. But, once I get a chance to stand, my joints decide they are ticked I compared them to something packaged in pink and settle on causing me pain as a fair way to get even. (Don’t they know revenge never makes anything better?)

Alright, maybe my issue isn’t actually with car travel, but rather doing anything that limits my movement for hours. And maybe my joints pop like crazy no matter what. And maybe I can’t wait to go to Pops.

So, what about you? Does car travel aggregate your symptoms? Does the promise of a fun destination make it worth it? Do tell.

Written Thursday, January 20, 2011.

Today was the big day…

My Ninth & Tenth Appointments

January 20, 2011 @ 10:00 am & 10:30 am

Mayo Clinic Hospital 1st Floor 1 West

Radiology MR

Rad MR Brain & Rad MR Venogram Head

Before my 2009 MRI, a twitter friend suggested I wear my coziest, warmest, metal-free clothes to the MRI.  She sure knew what she was talking about.  Today I wanted to do the same, so I planned every detail of my outfit to work with the MRI… except the pants.  The only cozy pants I brought on the trip have zippers at the feet and would have to be removed during the MRI.

Not good.

So, my mother-in-law and I left Mesa early enough to stop by Walmart so I could buy a pair of yoga pants to wear.  The rest of the drive was a breeze, and we arrived early enough to allow me time to change in the hospital lobby’s handicap restroom, and make our way across the lobby to the waiting room with time to spare.

The room was packed.  Like a coin-operated washer in college housing.  Way. Too. Full.  And, as I walked to the check in desk I decided I rather wait in the lobby than endure that sort of unnecessary closeness with so many complete strangers.  But, after checking in and being told the radiology wing was running at least 45 minutes late, I turned around to find my mother-in-law had actually found a seat for each of us, and the bulk of the patients had apparently been called to their appointment.  The room was half empty.

And there was a large fish tank in the middle of the room.  How did I miss that?

I have a fairly short attention span.  To mitigate impatience and disinterest, I typically carry a notepad with grid paper, a red felt tip pen, a book, and my iPhone.  Today these items came in especially helpful with my extended wait.  I may not be a Boy Scout, but I know it pays to be prepared.

And it pays to have a fish tank.

About fifteen minutes into our wait a pair of Mayo folks came into the waiting room, climbed a ladder, and began feeding the eels in the fish tank.  Fascinating, I tell you.  Fascinating.  They also fed the fish, but it wasn’t half as interesting as the methods they used to feed the eels (even the shy guy that liked to hide at the bottom of the tank).

Almost as soon as the fish-feeding skit duo wrapped up, a tour group approached the outside of the waiting room.  The tour guide paused, explained the sort of appointments that took places in the wing, and explained, “We call this the fishbowl room.  Can you guess why?”

Um…

I honestly believe it’s a toss up between the fish tank prominently located in the middle of the room, and the large bay of windows overlooking the lobby through which tour groups in power suits point, gawk, and loudly opine.

Oh wait, maybe I’m being a bit too facetious.

Anyway…

While my mother-in-law got pumped for our upcoming trip to my favorite place by reading the Unofficial Guide to Walt Disney World 2011, I people watched.  The waiting room seemed like a beach with waves of patients coming in and out constantly.  Three of us were there for almost 45 minutes, but everyone else was there less than fifteen.  I was impressed by the apparent efficiency of the wing.

Eventually a very tall and very young looking man came to fetch me.  He walked me down a hallway that was much longer than I imagined there was room for in the hospital, and dropped me off in a secondary waiting room.  This room was like a Motel 6 version of the dressing room I used for my x-ray last week.  It was tidy, but it felt more like a typical doctor’s office than of my previous experiences with Mayo.  A bit tired and a bit dated.

I didn’t have to wait long for another young-looking person to come call my name.  She walked be back up the hall a bit, and into what looked a bit too much like a hospital room for my comfort.  Luckly we walked around another corner, that looked more like a phlebotomist’s room than a hospital room.

At this point I was a bit confused.  I’d gone through great lengths and a dozen phone calls to remove with “w/sedation” from my MRI order, but she was talking about putting in my IV.

Wait, what?

I’ve never had an IV with an MRI before.

My genuine confusion was only increased by the poor soul awaking from anesthesia in the corner who was obviously sick to his stomach.  Gross.

The sweet girl recognized my concern and began to explain what she was doing.  Good save lady, good save.

She got me all wrapped up in a detailed conversation about where I wanted the IV.  She made me feel like a tough cookie for picking my hand over my elbow (but really I just didn’t want to have to have my sweatshirt sleeve pulled up for the entire 90 minute MRI).  She explained that, rather than pull me out of the MRI to inject contrast half way through, Mayo prefers to insert an IV and keep things going (makes sense to me).  She did her job, and she did it well.

After she wrapped up the port part of the IV, she sent me back to the secondary waiting room where I debated… “Should I look at the IV?  Will it make me light-headed?  This sucker is annoying.  I’ve never seen one before, in my own hand.  I should look.  No, there’s nothing to be gained.  Ew, look.  It’s bleeding.  Look away.”  And so on.

The MRI (technically MRI, MRI w/contrast, and MRV) went a million times better than I could have hoped.  I got to wear my slippers.  I was out in less than 45 minutes even though they scheduled me for 90.  I stayed calm (much thanks to lots of prayer by loved ones and myself), played MarioKart in my head (mostly DoubleDash), and almost fell asleep.

Actually, I think I did fall asleep but awoke when I twitched and accidently opened my eyes.  Yikes!

After my MRI, I stopped off at the handicap restroom to throw my sweats on over my too-big yoga pants then headed outside for some…

Fresh Air

My mother-in-law and I enjoyed a lovely lunch at Kona Grill and walked down the way to get some MoJo Frozen Yogurt (third time).  In true Kate form I butted into the conversation the sweet ladies enjoying their frozen yogurt at the table next to us on were having.  They were a bit off on their information about Apple products, and I just can’t let that sort of misinformation be perpetuated, so my MIL and I answered their questions.  We’re pros.  Daniel would be so proud.

Thank You

So many of you offered support, encouragement, and advice in preparation for today’s MRI.  Now that it’s over I am able to relax and realize just what a strength your confidence and concern continue to be.  I pray tomorrow brings nothing but good news and more of the peace I feel this evening.

All this talk of cozy clothes has me thinking, “We’re in my jammies.”  Which as me thinking of this sweet little girl.

Yesterday morning my mother-in-law and I made our way through morning rush hour traffic to the Mayo Clinic Specialty Building for…

My Eighth Appointment

January 18, 2011 @ 8:30 am

Mayo Clinic Specialty Building 1st Floor Check In

Hypertension BP monitor

Nephrology/Hypertension BP Monitor

As we waited in to be called back, we reread the packet I was given last week outlining the 24-hour bp monitor procedures.  It didn’t take long to realize I wore exactly the opposite of what they requested.  I wore a loose-fitting sweatshirt over a fitted, long sleeved shirt that I know works well under a blood pressure monitor… but the packet specifically prescribed a loose-fitting short sleeve shirt.

Fail.

I considered switching shirts with my mother-in-law (who wore an adorable shirt today that perfectly fit the instructions I was given), but an often-unnecessary habit I have came in handy.  I always wear a tank top under my shirt, so I decided that when the time came I’d shove my long sleeve shirt in my purse and throw the sweatshirt back on over the tank.  Although I think the gray-on-gray looks a bit weird without a black shirt in between, I can’t complain.

Well, I shouldn’t.

But I might.

Anyway, the nurse (I think) who fitted me for the cuff was friendly and patient with my apparent complete disregard for the packet I was given almost a complete week in advance.  She explained the process, took my blood pressure on both my arms, and eventually determined my left arm would be the best location for the cuff.

Pride-Fueled Side Note: Although she did not ask, somewhere toward the beginning of my appointment I told the kind lady my left arm would likely be the best place to put the cuff, as it is the only arm medical folks are ever satisfied with for blood pressure, blood drawing, and pulse-finding.  And, although I am no medical professional, I am a professional medical patient.

I’ve learned from dozens (if not not hundreds) of blood pressure readings that my right arm must be some sort of miracle… a pulse-less, blood-less appendage good only for writing, using my iPhone, and shifting my Matrix into drive.  But, what do I know.  I’m only the ONLY person who has attended everyone of my doctor’s appointments.

She went on to explain how the cuff would limit my daily activities, how the monitor attempts to get a reading every 20 minutes, and how it’d only go off once an hour during the hours I told her I would be sleeping.  She fitted the strap of the machine to a comfortable length, ran the cords through my sweatshirt, and helped me put the sweatshirt over the whole contraption.

She told me to keep a detailed journal of my activities using the clock on the monitor, which is 27 minutes ahead of reality and therefore a bit confusing.  And, finally, she informed me I don’t actually have an appointment at eight freaking thirty tomorrow morning. I can return the monitor to the information desk on the first floor anytime before 10am tomorrow.

Splendid!  I think I’ll be sleeping in.

Under Pressure

After getting fitted with the bionic bicept (or so it looked with my sweatshirt pulled taught over it), my mother-in-law and I headed to Paradise Bakery.  What was I thinking?  It wasn’t good the first time, and the second time did nothing to improve my opinion.  But, I did get to experience my first awkward blood pressure reading in public.  The sweet lady behind the register asked what I wanted to eat, and I just stood there, not moving a muscle, for almost a minute.  Like I said, awkward.

The drive home complicated readings, as the car movement (per the nurses warning) confuses the monitor.  And when the monitor gets confused it tries again… and again… and again.

Note to self: Avoid riding in a car for the rest of the day.  Sit here, journal your day, and appreciate this cozy recliner.

So, I got to sleep an extra hour this morning, which proved an unexpectedly wonderful thing when I realized just how annoying it is to awake every hour (sometimes more often) to a blood pressure cuff tightening on your sweaty upper arm.  I think I’d choose an awkwardly long pause in the middle of a conversation over what feels like an infinitely long pause when all you want to do is sleep.

Every reading caught me off guard, startled me enough to kick in my adrenaline, and complicated the typical roll over, fall back asleep routine.Plus, there’s only so much cord and strap on this thing, so I got a bit too close to this less-than-comfy (and less-than-stylish) contraption last night.

Off the Cuff

The blue, padded creature is back at Mayo.  I followed the instructions, removing the cuff at the exact time specified, folding my journal (which I had to add a page to) and tucking it into the case.  I took a quick shower, changed my clothes (Yes!), and made the drive to Mayo Clinic alone.

I have to admit, handing that gizmo to the sweet lady at the Information Desk a few minutes before 10am felt a bit like turning in a final exam back in college.  I sure hope it went well, but mostly I’m just glad it’s over.

And, on a TMI note… the 24 hours with a bulging bicep kinda reminded me of this totally unrelated post I read way back when.

So, here we are, sitting in the south-facing front room, enjoying the plentiful sunshine, and listening to the water feature melting snow pour off the house.  I’ve been catching up on the posts about my Mayo Clinic 2011 trip, so it seemed like a good time to catch up on some Mayo Clinic Radio.

Mayo Clinic Medical Edge Weekend is an hour long radio program that takes place each Saturday morning at 9 am CST.  The host, Dr. Tom Shives, is an experienced radio host and an orthopedic surgeon. He interviews specialists from Mayo Clinic with questions submitted via the website and Twitter (using #MayoRadio). They also accept a few questions via the phone, during the live broadcast.

Today, I thought it’d be fitting to listen to the June 5, 2010 broadcast on dizziness featuring Drs. Scott Eggers and Neil Shepard.  If you’ve ever struggled with dizziness, nausea, or feeling lightheaded, I strongly recommend you give this a listen.  The recording is about 45 minutes in length, and it held my (and my husband’s) attention for the duration.

A few notes…

• I appreciate their explanation of the different things people mean when they say they’re dizzy. For me, dizzy typically means I feel like my brain is a top, spinning around within the confines of my skull. A few times the sensation has grown so severe I become ill. But, rarely, if ever, have I felt like the world is actually spinning with me as the stand-in sun.
• My doctors believe I do not get enough blood supply or oxygen to my brain, but I’m not on medicine to lower my blood pressure.  In fact, one of my medicines was prescribed to raise my blood pressure, while the other was prescribed to lower my heart rate.  However, I pretty much fit the description of what happens when you’re taking medicine to lower your blood pressure.  (More on this issue tomorrow.)
• I love that they explain that benign things aren’t really benign if they are debilitating.  They may not be life-ending, but they are life-chaning.  But, I’ll take life-changing over life-ending, any day.

Now I’m thinking…

• Could any of my concussions have caused some of my current symptoms?
• Are my symptoms the result of something viral that will eventually resolve itself?
• Seriously?!  The Q-tip was created to clean baby belly buttons?  I never knew.  (Am I alone in being totally grossed out by belly buttons of any age, shape, or size?  Even the word makes me feel ill.)

While dizziness is a symptom I live with daily, I recognize we all have different trials.  Is there a health-related issue you’d like to learn about?  Head to their Upcoming Programs page to see if it’s on the calendar.  If not, tweet your recommendation @MayoClinic.  (Be sure to hashtag #MayoRadio.)

Do you have any Mayo-related questions?  Let me know.  Head over to the My Life with Fibro Facebook page, become a fan, and leave a comment.  I’m compiling the most frequently asked questions and will be posting the answers at the conclusion of my Mayo Clinic 2011 series.