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My Life with Fibro is Expanding


Good morning, and welcome to 2015.

By now you may have realized a notable deviation from my typical annual routine… no annual trip to Mayo Clinic.

Don’t worry. It’s nothing personal.

In fact, I’ve been on the phone with the Neurology department of the Phoenix Mayo Clinic at least once a week for the last few months. So, rest assured, that relationship remains strong and influential in my life. As much a blessing today as it was five years ago when I first stepped foot on their beautiful campus.

In full disclosure, for the first time since 2007, we didn’t even travel to Arizona to spend the Christmas with my in-laws.

Now, why on Earth would we deviate from two such long-standing, significant traditions?

Well, we’ve been working on a little something around these parts, and he’s due in eight days.

Yep.

Daniel and I are expecting our first child. A little boy we’ve affectionately nicknamed Groot, whom we could be not be more excited to meet.

Kate does Crossfit: Day 100


I never want to be one of those people… You know, the annoying folks who never shut up about what they’re into?

Having said that, if I feel strongly enough about something, I don’t typically care how I come off.

So, here goes… a rather indelicate attempt to walk a fine line.

 

Exactly 100 days ago my husband and I completed the fifth and final step of on-ramping at our local CrossFit box.  Although, in truth, that first full WOD was just the beginning.

To clarify: WOD is an acronym for “workout of the day.”

As I’ve mentioned in previous posts (1234, and 5), I was a gymnast growing up.  So, if you know much about gymnastics (or CrossFit), you’ll know CrossFit is a pretty logical workout regimen for someone with my background.  It’s challenging, it’s scalable, and it’s straightforward.  And, while the community is remarkabley tight-knit and there are team events in the Games, CrossFit is a very individual sport.  Which, frankly, makes it even more my kind of thing.  Team sports have never been my style.  

The idea of a large group of people counting on me, and the possibility I may let them down?  Pass.

It’s late, and I’m fighting a headache, so I’ll call it a night… but, I’ll keep at the CrossFit and be back over the coming weeks to discuss the following:

  • How did we get into it?
  • How is my health holding up?
  • What is a typical workout like?
  • How frequently do I workout?
  • What does it cost?

 

I look forward to sharing this new bit of mylifewithfibro with you.  Let me know if you have any specific questions, and I’ll be sure to address them.

Until then, stay well.  Have a wonderful week.  And don’t let a fall flare get the best of you.

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On the Fly: Mayo Clinic Trip Number Four, Winding Down


I’m in DFW, waiting for my flight home. This whirlwind trip to the Arizona Mayo Clinic will last a total of about 48 hours, and this is hour 46. In 90 minutes I’ll be home. In 120 minutes I’ll be picking my car up from the dealer. And in 180 minutes I’ll be at work.

I think.
There are many updates I will share, but for now I will just say…

It was all good news.

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1 Way My Life with Fibro Tempers Me: Uncertainty


When I woke up this morning my mind seemed to already be thinking about how living with constant health issues, small or significant or quite painful, has defined / refined / smoothed / taught / humbled / made me.  While the ways seem endless, above all, my health  issues have truly tempered me and my tendencies.  So, since I know you know what I mean, I’ll be sharing some as they come to mind.

 

Lately I’ve thought a lot about all the time I spend in some state of uncertainty.

You know the drill.

  • “Am I getting sick, or is this a flare?”
  • “Is this IBS or an allergy or food poisoning?”
  • “Am I not getting good sleep, or is this my CFS?”
  • “When will my POTS correct itself?”
  • “Will I always feel like this?”
  • “What made today a good day?”
  • “Did I over do it?”

Although my family faced bouts of uncertainty while I was growing up, I remember vividly the first time I faced it as an adult.  At least the first time I faced an uncertainty of true weight…

Daniel graduated in August of 2006 and continued to work full time at a residential treatment center until I graduated the next April.  As we neared time for my graduation, I began interviewing for positions around the country.  We knew he wanted to attend graduate school, but we also knew we’d have to decide how to respond to my job offers long before we’d know the status of his grad school applications.
I remember many nights heading to bed in our basement apartment with my mind racing through scenarios, everyone ending with me acknowledging it was all a bit bigger than my tired mind could tidy before I fell asleep, or gave up on sleep and headed to classes.

Then, something changed.  I don’t remember who got me there, but I remember one evening, as we closed the day with a prayer, I realized I had to give it to God.   I couldn’t see the big picture, and make sure the events fell into place just so, but I could do my best in school, rock my interviews, support Daniel in his application process, and then put my faith in Heavenly Father to make it enough.  To sort it all out and give us a hint.  Or, in our case, a very strong suggestion from someone dear to us (because it never seems to be just a hint in our marriage).

So, I did.

And then, I got to work making life happen. In the best way possible.

"The willingness to consider possibility requires a tolerance of uncertainty." Rachel Naomi Remen

Source: Hollye Jacobs of The Silver Pen

 

It wasn’t long before truly amazing things happened (much thanks to inspired friends and family who spoke up) to land us here, in Arkansas, house sitting for a remarkable family for three years, with two challenging and stable jobs, a new car, and the perfect bilingual graduate program for Daniel.

It’s now been over five years since we moved to Arkansas. And in those five years, we’ve seen tremendous blessings come into our life, faced issues we did not expect, met people we will love forever, and had many opportunities to remember that…

uncertrainty is glorious

 

Uncertainty really can be glorious.  Especially if you let it work for you.

While it tries our heart and stretches our soul, I believe it refines us. It reminds us to be happy with a good day, today. To be and do our best, always. To keep track of, and give thanks for, small wins. To have patience with ourselves… as we wait for a good day, and in all things.

Luckily for me, the most significant bits of my life are certain.  I have security in all the things I truly need, I’m just still really learning that last one. I assume I will always be… But, for now, I am proud to see the patience with which I try to face days in the frustrating middle ground, feeling better than awful and worse than great.  My patience truly is ever-increasing.

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Mayo Clinic Trip Three, Part 1 – Big Changes


After all the appointments I had back in January 2011, and the subsequent bills, we knew it’d be best to get my next round of annual appointments in the same year… so as to minimize expenditures by making the most of having met our deductible so early in the year. So, when the beginning of October rolled around, I called Dr. GH’s secretary to schedule an appointment… just as I’d been instructed.

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.

Kate's List of Questions for Mayo

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?

 

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