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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 4 and 5


This is a strange mix of notes I jotted down on Tuesday, January 18, 2011 and Wednesday, January 19, 2011.  I’ve done my best to piece them together into a coherent post that fairly shares what it’s like to wear a blood pressure monitor for 24 hours.

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.

2011011801 BP Monitor Strap

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.

20110118 BP Monitor Journal

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.

20110118 BP Monitor

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.

My Life with Mayo Clinic (Radio): Dizziness


Daniel and I had a lovely morning.  We ate breakfast at Panera, discussed our upcoming trip to Walt Disney World, and headed to Border’s to pick up an online order (I managed to get at nearly 60% of the original price).  After our errands we did some practical bits around the house, ate leftover Chicago-style pizza, and decided it was time to chill for a bit.

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.

Wednesday What: Headaches


What do your headaches feel like?

Sometimes, mine feel like this.  Other times they feel like my brain is throbbing and will surely burst my skull.  Kinda like this bit I found via Pinterest:

Bastien Aubry - WoodcutsI have no idea if this can be purchased anywhere online, but you can visit this site to learn a bit more about this award-winning work.  If you find a place selling prints of this woodcut, please let me know.

Mayo Clinic 2011, Intermission


This was written Monday, January 17, 2011.  I was exhausted after a long day at the park, and neglected to post it.  And, with that decision, my procrastination in posting my Mayo Clinic 2011 articles began.  I will be playing catch up this week, so don’t wander too far.

All great works have an intermission… why would Mayo Clinic 2011 be any different?

Intermission

I wanted to make the most of my Mayo-free time in Arizona, and I’d say I succeeded.  Here’s a bit of what’s happened:

  • I fell in love with this salt cellar and pepper shaker set.  Trust me.  It’s stunning.
  • Jen got her birthday gift in the mail.

  • I spent far too long appreciating these.
  • Dan taught Spanish to kids across the country, from the parking lot of a Mexican market, using Skype, on an iPhone.  No big deal.  (Actually, he did this a week ago… but I had to share since he did it a second time during intermission and I didn’t get to take a picture.)

20110110

  • I felt like I was riding these, even while sitting still.
  • My sweetie flew home, worked Friday, then had all weekend and today to miss me… and look forward to what promises to be an impressive snow storm this Thursday.  He will probably get a snow day to sit home and think good thoughts for me and my MRI.
  • I decided I will order this when Dan and I finally celebrate our anniversary at our beloved Bonefish.
  • Beautiful… city and dancers.
  • I went to this lovely park to celebrate Martin Luther King, Jr. Day with Dan’s family.

20110117 Papago Park

  • This fascinated me.  I can’t believe I never saw the sun.
  • I liked this big squishy guy.
  • Daniel took care of two sick pupsqueaks.

That wraps up this evenings post.  As always, after thinking through my life, I’m feeling like a lucky duck.  I am grateful for this opportunity, and for this intermission.  I recommend you go think through your life.  I am sure you’ll end up feeling tremendously blessed.

Tomorrow I get the blood pressure monitor put on.  I will wear it for 24 hours.  That’s all I know. When I know more I will tell you.

Great Fibro Blogs (Including Mine?!)


I’m taking a brief break from my Mayo Clinic posts to share a bit of fun news…

You may remember, I was quite excited when Alltop created a page for the top fibromyalgia news.  Well, consider me thrilled.  Recently, a reader brought to my attention the fact that My Life with Fibro has been added to two additional sites as a recommended resource for fibrofolks.

  • Masters in Health Care – 50 Great Blogs for Fibromyalgia Support
    • says folks should read My Life with Fibro “for lessons in how chronic pain can lead to some surprising self-awareness and insight”
    • made me blush with their sweet summary
    • includes many other (49, to be exact) sites you should check out
  • The Daily Reviewer – Top Fibromyalgia Blogs
    • is quite similar to Alltop
    • features links to recent articles from each of the featured blogs

Thank you for your continued support and contributions.  I feel much like I did this night, when I waxed all sentimental.  I am humbled by the compliment paid to me by Masters in Health Care.  As I alluded to here and here, my primary goal when I started My Life with Fibro was to bring folks with fibromyalgia together and encourage them to learn from each other. I hoped to raise morale by raising awareness.

My goals remain unchanged.

What are your goals?  Why do you blog?  Why do you tweet?  If you don’t mind me asking, why do you read My Life with Fibro?   What more could I do for you?

I am compiling a list of questions folks have sent me regarding all things Mayo Clinic.  If you have one to add to the list, leave a comment or, if you’re more comfortable, email me kate at mylifewithfibro dot com.  I will post the answers in the next week or so.

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