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Written by Kate

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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.

Fibro on the Fly: Fixing to 5K?


Last night Daniel and I spent thirty minutes walking and jogging through the enormous parking lot over our back fence. He’s using an app named something like “Zombies, Run!” to get into this habit… And I’m considering a 5K.

If you know me at all, you’re likely thinking, “Kate went jogging?!” As you well should be. My arthritis and fibromyalgia specialist would frown on me jogging, because he fears it will trigger a flare. However, my POTs doctors at Mayo were adamant that I should walk, run, swim and / or bike. They also had me quit lifting weights, my previously-preferred method of exercise. After yard work.

Speaking of yard work… Before we went out last night I was already a tad stiff from work we did Saturday. However, my soreness does not seem to be increasing, so I will keep counting my blessings. And, as always, I will monitor my pain levels and adjust my activities as needed.

So, tell me… What do you do to keep in shape?  How do you stay fit but avoid a fibro flare?  Do you have a go-to exercise for minimizing your POTS symptoms?  Any advice for a relative beginner like me?

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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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My Mayo Clinic Traditions


To deal with all the awkward, and make my annual(ish) Mayo Clinic trip something special I make a point to develop a new tradition, buy an item of clothing, or discover a new treat every time I come to Mayo.  This trip has been no different.

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.

walking on our wedding day

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.

Nabisco Munchables Pretzel Rounds, buttery flavor

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.

On Elephants and A-w-k-w-a-r-d Explanations


It is unavoidably awkward to explain to folks (or even to not explain to folks) that you take off work to travel half way across the country to go to the doctor when you aren’t fighting some sort of terminal illness.

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.

 

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