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I'm Kate.

I have Fibromyalgia, POTS, Osteoarthritis, IBS, CFS, and SVT.

I am humbled by, and grateful for the lessons I learn through, my invisible illnesses.

Mayo Clinic 2011, Day 3

Last night I got a lengthy voicemail from my scheduler at Mayo.  She listed the appointments they’ve scheduled for me over the next week, including a new one for today.  Dan and I are taking the morning easy, but pretty soon we will head up to the Specialty Building for…

My Sixth Appointment

January 12, 2011 @ 11:30 am

Mayo Clinic Specialty Building 2nd Floor Check In
Radiology General X-ray
Rad Cervical Spine X-ray

I’d say they have this down to a science, but that sounds a bit obvious when it comes to medical things.

After checking in 15 minutes early, I was called back before I had time to take my seat.  (What a pleasant deviation from the typical doctor’s office experience.)  The kind lady verified my birthday (11th time, I think), showed me to an expansive and impeccably clean room of dressing rooms, explained just how much I had to remove,  and let me be.  If not for the whole hospital gown thing, I’d have felt like I was in a high-end department store with my personal shopper.

With some maneuvering and clever mirror usage, I was able to fasten my gown so as to prevent an unnecessarily awkward moment while I waited for my turn.  I took the time to text Dan to tell him I spoke too soon about being grateful my conditions rarely require me to remove my clothes, locked my dressing room with my stuff inside, put the curly 1980’s keychain around my wrist, and headed to the prescribed secondary waiting room… where I got to sit on a bar-height waiting room chair.  Who knew such a thing existed?  Not I.

Within give minutes a young-looking lady called me back.  She asked what was up and what we’d be shooting today.  I explained my understanding of the task at hand, she verified my birthday (12) and full name.  Although it took nearly a dozen, “just a smidge to the left”s, she was able to line me up just so into two different positions, take her x-rays, and send me packing in less than five minutes.  Perfect, I tell you.  Perfect.

Lunch Date

We had an almost two hours to burn before my next appointment, so we pulled out our UrbanSpoon app and went to work.  Long story short, it led us to a development with a Kona Grill (one of my favorite summer internship business trip stops).  Dan had never been, so it was the obvious and necessary choice for lunch.

While looking for parking on the way to Kona, I spotted a MoJo Frozen Yogurt place, so after lunch we strolled down High Street to grab some for the road.  I went for a mix of Original Tart and Apple Pie with kiwi and blueberries.  I think Daniel got cookies and cream.  Anyway, it was delicious.  The shop was immaculate, and the frozen yogurt was the best I’ve had.

We headed back to the hospital with me feeling a bit like a small child.  Why or how does frozen yogurt always seem to get all over your face?  It’s not that you can see it, or that it’s really even there, but it feels like your face is as sticky as sweaty baby fists. No fun, but totally worth it.

If you’re planning to make a trip to the Mayo Clinic in Arizona, I recommend you add CityCenter of CityNorth to your list of time-fillers.  It’s located just north of the 101 on the west side of 56th Street… less than two minutes from the Mayo Clinic Hospital and Specialty Building.  Shops, restaurants, and almost no people.  That part is a bit eerie, but the service was wonderful.

My Seventh Appointment

January 12, 2011 @ 1:45 pm

Mayo Clinic Hospital 5th Floor 5 East
Neurosurgery Consultation
Dr. M. K. Lyons

This was fairly short and sweet.  After the usual name and birthdate verifications, Dan and I were invited back to an office where we waited just a few minutes for Dr. Lyons.  He asked who Dan was, then proceeded to look directly at him while addressing me.  I had not realized how strange it is to have a conversation with someone who is not looking at you.  At first I thought, maybe he’s just like that.  Maybe that’s just how his eyes work, but then I remembered, “This guy is a NEUROsurgeon, I suppose his eyes can’t just be like that.”

About that time he began looking at me, when he spoke to me.  He went on to explain that he’d reviewed my MRI from late 2009 and he found no sign of a cyst.



The three folks who diagnosed me were wrong?

He assured me he’d reviewed his opinion with their top folks and they agreed.  If there is any cyst in my brain, it’s tiny.  So small as to be lost between MRI slices.

Lovely.  Best news in a long time.

This is why I am here.  Smart people, on a schedule, who make things happen.

In Other News

  • Dan’s decided he and I are aging amateurs… not young professionals.  I suppose I agree.
  • How do you pick the perfect gift?  This year I’m sharing my gift shopping process.
  • I can’t think of a more sweet or lasting way to spend $240. The Commission Project
  • I agree with POTUS: “If this tragedy prompts reflection & debate… let’s make sure it’s worthy of those we have lost.”

Mayo Clinic 2011, Day 2 Part 2

This is the second half of this post.  If you haven’t read Part 1, I suggest you take the time to do so.

Wallet Time

After my enjoyable trip to the phlebotomist, we had almost two hours to burn until my next appointment, so we headed down Mayo Boulevard to The Container Store.  Since you can’t exactly carry a closet organizing system on a plane, we mostly perused their small and/or clearance items… which turned out to be a lucky tactic.  Dan needs a new wallet, and we were impressed by a Mighty Wallet one of Dan’s brothers gave another of his brothers for Christmas, so when we found a stash it was a logical purchase.

While Dan bought his wallet, which cutely totaled $4.09, I got a call from a Mayo scheduler with some less-than-exciting news.  All the blood pressure cuffs used for the 24 hour monitoring Dr. A-Z ordered are booked until next Tuesday.  So, I am here until at least next Wednesday, when they’ll remove the cuff.  And Dan committed to return to work this Friday, so we still need to buy him a ticket to fly home Thursday night.


But, I am here to figure things out and get answers.  There’s really no rush to get home if I’m still feeling awful.  And, to be honest, I am always in need of a reminder to practice patience.  Aren’t we all?  So, although I feel a bit like I won the lottery (got to bring Dan with me) and then had to pay 50%+ taxes (send him back before I’m done), I’m counting my blessings.  Namely the fact I get to stay with family while here in AZ.

As we discussed how we wanted to spend the hour+ until we needed to be to “the Clinic” in Scottsdale (read: almost Fountain Hills),  I noticed the price tag on the back of the package for Dan’s wallet read something like $14.99.  Recognizing the good deal and my envy of his purchase, I ran back into the store to purchase one for my mother, and one of a different style up for myself.

Head East (dad music reference intended)

Finally we got on the 101-S to head to Shea Boulevard, and then east to “the Clinic.”  I’d been told by a scheduler that the two campuses were about ten minutes apart, but let me set the record straight… ain’t no way.  Here‘s the proof.
View Larger Map

Google Maps says the drive is over 14 miles, or 25 minutes, and I believe them.  But, if you’re from the valley or have been a Mayo Clinic patient, you know Shea seems to have stoplights every quarter mile.  And, my appointment was during lunchtime, which created traffic that exacerbated the apparent length of the trip.

Let’s have a little fun and compare the Google Map with the Mayo-provided map.  The distance from the 101 to B (or 1) sure looks lengthier in Google’s version.  Do you agree?

Mayo Clinic Arizona Map

Oh well.  I suppose it was just another opportunity for me to practice my patience.

Which, in all seriousness, this appointment required very little of.  Another patient had to cancel their appointment at the last minute, making room for lucky ol’ me to visit with a headache specialist less than two hours after Dr. A-Z put in the appointment request.

My Fifth Appointment

January 11, 2011 @ 12:40 pm

Mayo Clinic Building 3rd floor Check In
Neurology Consultation
Robert L. Rogers PA

When we arrived, Dan dropped me off, made his way to the parking garage, up the elevator to the Concourse level, through the entrance and around to the other elevators, then up to the third floor waiting room, where he caught up with me.

I’d checked in at what looked remarkably like the teller counter of a bank and was stewing over a pair of surveys they’d asked me to complete regarding my headaches.  Frankly, it felt a bit like the time my boss gave each member of our team a personality test.  I had to keep reminding myself to not over think my answers, but go with my initial response… since that’s typically the most honest.  Isn’t it?

After I finished the surveys, I totaled my scores (I kid you not.  Just like in the teen magazine I subscribed to in the 90s.), and felt a bit relieved when the total indicated I do, in fact, deal with severe and often debilitating headache pain.  Seriously, I’m afraid I actually felt validated by three pieces of paper on a clipboard with one of those annoying flat pens that has a curly cord with an end that sticks to stuff.

It’s pathetic, I know.  But I’m Gen Y, so I need that sort of thing.  Don’t I?

Continuing the honest phase, I suppose I should admit that by now I wasn’t loving being at “the Clinic.”  It felt awkwardly arranged, I struggled to relax, and it seemed deafeninly loud and yet quiet enough for me to hear all the conversations being had at the check-in desks.  And I was starving.  We were starving.

I read some magazine I didn’t really want to touch because it felt grimey and Dan read This is Your Brain on Music.  It’s a book I found for him that he absolutely adores.  He’s shared quite a few fascinating tidbits with me and, if you’re into that sort of thing, I recommend you give it a read.  You will surely be a better person for having done so.

Eventually, an almost intimidating nurse (I think) called us back, verified my birthday (??), rechecked my vitals (why?), and walked us to an office lit only by lamps.  One on the desk and one on the bookshelf.  A painted version of the collapsable bookshelf one of my college roommates had.  It was pleasant, but it made me want to take a nap.

Meeting Mr. Rogers

Part college professor, part sensitive shrink, Mr. Rogers (I couldn’t resist) used big words and confusing explanations, but he seemed sincere.  He too is a headache sufferer, so he understood much of what I described.  Early in our conversation he divided my symptoms into three types of headaches.

  1. Typical Migraines – I’ve had these since college and get a few a month.
  2. Unknown #1 – pressure, quick onset, unpredictable length, front-left portion of head, debilitating, often accompanied by…
  3. Unknown #2 – stabbing, breathtaking, vision-blurring, typically short-lived

We set aside all talk of #1, as these are common and I certainly don’t need to pay Mayo Clinic to help me understand how to deal with them.  Plus, the medicine I am on to raise my blood pressure does not play nice with anything other than acetaminophen, which does nothing to mitigate my migraines.  So, basically, I just have to buck up, get sick, and head to bed.  End of story.

Most of our time was spent discussing the second type of headache.  Mr. Rogers said something quite like this:

I wanted you to come in here and say activity aggravates these headaches, and that light and sound make the pain worse, but you didn’t… So these aren’t migraine.  Well, if they are, they’re completely atypical.  Do you know what migraine is?  The headache is only 30% of the phenomenon.

Somewhere in here his note taking with a fountain pen and the big words started making it hard to focus on what he had to say.  I noticed a picture of a happy-looking dog and decided to ask if it was his.  Althought it wasn’t, it got us talking about his dogs.  And talking about his dogs got us talking about our dogs.  And talking about dogs seemed to warm the conversation.

He still used lengthy medical words, but his explanations were understandable, and he went on to teach me some things that were completely new to my brain.  Here are the highlights, in Kate-speak:

  • Migraine begins at the back of your head, where your head meets your neck.  The signals causing the pain travel at about 3-5mm a second, from neuron to neuron over your head toward the front of your brain.
  • People who inherit migraines seem to have a lower tolerance for chaos, noise, crowds, etc.  In his example he said folks like Dan, who don’t struggle with headaches live with the bit of their brain that sorts through and processes input dialed to a 2 when in normal situations.  In stimulating situations their dial may have to go up to a 6 to handle the input.
    Folks like Mr. Rogers and I, who get severe headaches, live at a 6.  Our brain has to work harder to stay efficient and not become overstimulated.  So, headaches happen when our brain jumps up to 9 or 10 to handle loads of input, and then struggles to dial back down to our own, screwed up “normal.”
  • The occipital nerve can get pinched in tight muscles at the back of your head… causing horrible headaches, dizziness, and the strange tingling I often feel on the back half of my head.  There are a few procedures available to reduce or eliminate this pain.  Search for “occipital nerve block” if you want to learn more.

Although we haven’t done any other tests, so we can’t really know, Mr. Rogers feels the headaches I get that make almost forget who I am are related to the medicine I take to raise my blood pressure… midodrine.  He spent some time researching recorded side effects, even calling coworkers to tap into their memory.  Sadly, all coworkers were busy in their own appointments, but the gesture really impressed me.

In the end all we really did was talk.  Once the rest of my appointments are complete we will meet again to discuss the findings and plan the next step.  Although, to be honest, the whole nerve block injection thing is not sounding like it will eliminate the type of headaches I get 20+ days a month.

The rest of the day has been fairly chill.  Dan and I stopped at In-N-Out Burger on the way back to his folks.  We’ve spent the evening relaxing around my in-law’s house and closing tabs (including this and this), except for the quick trip we took to Pet Club to buy dog food.  I wore my slippers.  And I missed my puppies.

2010121301 Notch's Surgery

20101206 Lil Lady

Still do.

Do you have any experience with headache specialists?  Any questions you think I should ask next time we meet?  Did my Mighty Wallet make you jealous?

Wondering what I got on the personality test?  It was the DISC and I was all “I” for Influencer.  My subset was “The Communicator.”  (Sounds like a dimly lit television show, doesn’t it?)  What personality type are you?

Mayo Clinic 2011, Day 2 Part 1

Traffic was reasonable this morning.  We made it to Mayo with time to spare and decided to use the extra time to catch a good meal.  Using UrbanSpoon we found the closest non-fast-food breakfast option, gave it a go, and learned a two-part lesson:

  1. Paradise Bakery is owned by our beloved Panera Bread, where we eat dinner every Thursday.
  2. When in doubt, order a muffin.

After looking Paradise Bakery up on the web, we lost track of time while reading about Panera’s pay what you can afford concept, and had to hurry down the road to the Mayo Clinic Hospital.  We had three minutes to to find a parking spot, speed-walk around the construction and through the voluminous lobby, catch an elevator to the fifth floor, and head east (nice band) to the check in desk for my second-to-last appointment

My Third Appointment

January 11, 2011 @ 9:30 am

Mayo Clinic Hospital 5th Floor 5 East
Neurology Evaluation
Dr. A-Z

As I verified my birthday (time 5) they asked if I had any medical records or MRI images to show.  And I did, but… on the ride up, I’d asked Dan to read me all the documents they’d attached to the updated itinerary I received upon arrival yesterday.  Well, in our rush to get to my appointment we left the papers in the car.  Lucky for me, I married an incredible man who was quick to run back to the car and fetch what we forgot.

Five minutes after Dan made it back to the waiting room, they called my name to see Dr. A-Z.  As we walked to the his office, the nurse asked me to verify my birthday (time 6) and did the usual temperature, weight, height, pulse, and blood pressure check.

Prior to my appointment I was told Dr. A-Z was a gem, and I was not disappointed.

For starters, he kept calling me “doll.”  How sweet is that?  Then, he managed to get me talking through my health history… not just since the symptoms for which I came to Mayo began, but from childhood through today.  His questions seemed to remind me of various possibly-related health issues I’ve dealt with throughout my life and brought to light some stones we’ve left unturned, or however that phrase goes.  After hearing what I had to say, and explaining how some of my health issues may be related, Dr. A-Z suggested we go after some of those unturned stones.

And, he made it happen.  He explained why he felt I should have additional blood work done, neck x-rays taken, a 24-hour blood pressure observation, another MRI, a venogram of my brain, and a follow-up with am after all these were complete.  He asked when I was planning to leave Arizona, then walked me to the scheduling desk where I met a helpful lady named Tamara.  She verified my contact information (You thought I was going to say birthday, didn’t you?) and sent me packing to…

My Fourth Appointment

January 11, 2011 @ 10:55 am

Mayo Clinic Specialty Building 1st Floor Check In
Laboratory Visit
MCSB Laboratory

There’s not much to say about the first of the appointments ordered by Dr. A-Z, except that I had the best phlebotomist ever and the whole thing took less than five minutes.

The second half of the day was astoundingly educational and warrants its own post.  Look for something in the next day or so.  Thank you again for your kind thoughts.  I pray my relating my Mayo Clinic experience may, in some way, help you.

Mayo Clinic 2011, Day 1

Today began with a super-quick breakfast at Subway (not to be repeated), some serious traffic on the 101-N, and lovely Arizona weather.

Because of the traffic we were 15 minutes behind schedule and barely made it to Mayo in time for my first appointment (we’d planned to be 15 minutes early).  We lucked out and found a parking spot with ease, were given a ride to the Specialty Building entrance (just like last year), ran up two flights of stairs (felt more like four), and made it to the Check-In desk embarrassingly winded.  After the routine “Can you tell me your birthday?” and a few formalities I was checked in for…

My First Appointment

January 10, 2011 @ 9:45 am

Mayo Clinic Specialty Building 3rd Floor Check In
Cardiology Testing
Cardiology Electrocardiogram (ECG)

After a two minute wait the same lady who gave me my ECG last year came to the east waiting room and called my name.  As we walked to her office, she verified my birthday (that’s twice, if you’re keeping count), and complimented me on my scarf

While I was, and am still, unable to remember her name, she remembered (or referred to the paperwork for) key talking points from our last visit.  She asked about my job, my husband’s students, and even commented on the fact my hometown was currently covered in snow and record-setting cold, just as it was last year when I visited.

Although cardiology recently relocated from a different floor, her office had the clean, homey feel I remember.  As you may know, getting an ECG involves some clothing removal.  While I typically abhor this sort of thing, the carpeted floor, wood cabinet covered walls, and yellow (not blue) lighting helped me feel less uncomfortable.

It took a few times to get satisfactory data, but since an ECG takes only a few seconds, I was in, hooked up, unhooked, dressed, and out in less than five minutes.  Incredible.  Within ten minutes of my appointment time I was back at the 3rd Floor Check In desk for…

My Second Appointment

January 11, 2011     10:15 am

Mayo Clinic Specialty Building 3rd Floor Check In
Cardiology Return Visit
Dr. GH (not his real name)

After checking in, and again being asked to verify my birthday (3rd time), I headed back to the east waiting room and began to compile my list of questions for Dr. GH.

Every time I have a doctor’s appointment (or meeting of any sort), I like to drain my brain onto a sheet of paper.  I list questions I want to ask, what I want to accomplish, and comments I expect to make.  I developed this habit in-part due to:

  • my mother’s example of impeccable and consistent list-making
  • my forgetfulness and tendency to make conversation, instead of progress
  • my experience in countless corporate meetings that get derailed or made pointless by a lack an agenda or an excess of ego (Perhaps, when I get back to work I will suggest we implement something like this.)

Once I completed the list I was able to relax.  I began to eavesdrop on a conversation between a middle-aged patient sitting a few chairs to my left, and a septuagenarian on oxygen seated across from her.  (If, by chance, any septuagenarians read my blog, I am not profiling based on appearance.  In fact, I know her exact, and very memorable, birthday.  It’s St. Valentine’s Day 1932, and I heard her verify it twice, so it stuck.)

They were discussing the diseases that led them to frequent Mayo Clinic, the duration of their various visits, and where they buy their handmade shoes.  Although I don’t have fancy-pants shoes, and I haven’t been at Mayo Clinic for more than two months, I somehow butted my way into the conversation (as I too often do).

Toward the end of our conversation, the other women began talking about pulmonary diseases and lung cancer.  Just as they did, an anxious man I estimate to be around 30 walked through our conversation, gathered the things he’d left in the waiting room during his appointment, and began to walk away.  As he did, he dropped a package of cigarettes.

The kind, but assertive woman to my left called him on his addiction with a disarming mix of honesty and humor.  “Here we are discussing pulmonary diseases and cancer as you drop your cigarettes.  It’s a sign.  You absolutely must quit.”  He rolled his eyes, mumbled something about having bigger problems, and disappeared into the elevator.

Around this time, I tweeted:

I sometimes feel more comfortable around “sick” people. They like to help each other. And they are slow to judge.

There she sat, deathly ill, arguabley worse off than most people in the waiting room, yet still concerned for the health of a complete stranger.  Although he may never take her advice to heart, I believe it is often true that the advice of a stranger or mere acquantice can be more harsh, thought-provoking, and action-promoting than the nagging of someone with whom you are close.

Both women were soon called back to their appointments, leaving me to think of what I’d learned.  Eventually I picked up a local magazine, found an adorable potential gift idea in said magazine, and waited.

When my appointment time rolled around, my name had yet to be called.  We chuckled that not being called back on time felt like a let down, and continued to wait patiently.  I admit, this would typically be what I expect to do when going to see a doctor (minus the patiently part).  In fact, I routinely wait more than 45 minutes after my appointment time to be taken to an exam room by a nurse.

But, as you’ve likely realized, Mayo Clinic is not typical or routine.  They are punctual, and have little-to-no leniency with patients who are more than ten minutes late for their appointment.  If you can’t make your appointment, they will give it to someone who can.  As I believe they should.

Finally, around 10:40 I was called back for my appointment with Dr. GH.  He welcomed me with a greeting that mentioned my state and my employer.  He teased me about being a complicated girl and speaking too quickly.  And, most importantly, he took the time to answer my list of questions.

Our visit was brief but thorough.  After the initial small-talk, we decided on a slight revision to my dosages, and were sent on our way by 11.  We hit up the In-N-Out near my in-laws and are calling it a successful day.

What a blessing to be here at Mayo.  I am grateful for the opportunity.

Have questions about what it’s like to visit Mayo or how to make it happen?  Leave a comment or, if you’re more comfortable, email me kate at mylifewithfibro dot com.

Mayo Clinic 2011, Day 0

I’ve been up for nearly 20 hours and the thoughts are not flowing in an articulate manner.  Please read with patience…

My Heart

Tomorrow is my annual appointment with my cardiologist at Mayo Clinic.  If you’re new here, I recommend you read this, to get a bit of background knowledge on man we refer to as Dr. General Hospital.  Picture low v-neck scrubs, a Ken-doll hairstyle, and oddly forward questions… then add a mastery for heart-related issues and an office with a stunning view, and you’ve got Dr. GH.  Although I find his demeanor and appearance more-than-a-bit amusing, I take his advice seriously.  Since we first met last January, I have tried to closely follow the regimen prescribed to me.

Sometime in late September the symptoms that ultimately led me to Mayo Clinic seemed to gradually return.  Though they aren’t as severe as they were 12+ months ago, they are distracting, even sometimes disabling.  I look forward to learning about additional steps I/we can take to improve my health and reduce the duration and severity of my symptoms.  And, after we’re done with Mayo for the day, I look forward to a trip to Ikea (and hopefully some meatballs).

My Brain

On Tuesday and Wednesday I will add a new portion to my Mayo tradition… a visit with a neurologist and a neurosurgeon.  Don’t get all freaked out by the word, surgeon.  Mayo assures me anytime you have an appointment with a neurologist you must meet with a surgeon.  Sounds a bit like a great money-making scheme, but I am consistently impressed with the reasonable prices of Mayo services, so I choose to trust their process.  We will discuss the cyst in my brain, the hellish headaches, and if this sucker will grow and become a bigger issue.  While getting over my heart issues is on my list, ditching these headaches ranks at the top of my to do list.

Thank You

  • Barb, for being a sweetie and allowing Dan to travel with me
  • Mom, for spending those 26 days with me last year
  • In-laws, for sharing your car, home, food, and West Wing DVDs

And, I want to thank each of you, for sticking with this post, and me, on this late night.  I appreciate your love and support and will be sure to let you know how tomorrow goes.