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Kate Update: Ten Months since Mayo Clinic


In the ten months since my trip to Mayo Clinic I have done many things, too few of which I have mentioned to y’all.  I will now attempt to right that wrong… Twitter-style… in 140 characters or less.  Stick with me.  I know these do not directly relate to my (or your) health, but I will get to that later… I promise. Here goes:

  1. Visit from Daniel’s sister and our only first nephew.  SIL interview.  SIL offer.  No cross-country move. 🙁
  2. Unexpected move to our “other” house. Sad to leave the Douglas. Glad for big yard and a visit from from my youngest BIL.  Sick Daniel.  New carpet.
  3. After much planning (and hard work on my MIL’s part), our lovely lady-pup Notch (with her notched ear) made her way across the country to our rainy town.
  4. Ten wonderful days @ our special place with Sweats’ side of the family.  Animals. Children. Rainstorms. Restaurants. Rides. Water.
  5. We got lucky when a sweet Zoey Lil pup found her way to our home, where she always belonged, in a very round about way.
  6. Four unexpected days, including Halloween, with Daniel and my folks at the Discovery’s STS-133 launch at KSC  WDW.  *cue typical withdrawals*

There you have it… ten months in a half-dozen tweets.

I apologize for the lack of pictures, but I am working on corralling, organizing, and editing what amounts to every digital image in our home (more than there are people in my town).  I’m all over it.  I swear.

Speaking of tweets, do you tweet?  I do. sometimes more often than others.  Be my friend.  Please… Thanks… Bye.


Or, not bye.  Not yet.  Or ever.  I still owe you health talk and such.

As I said before, my health is, by no means, perfect… but I am nonetheless astounded by the scope of my improvement.  I still have days when I am dizzy and my heart makes itself known, but even on those days I have more energy than I did this time last year.

How have I achieved such a significant improvement in my heart condition?

As part of my Mayo-prescribed treatment plan I continue to:

  1. maintain a daily water intake of 4-7 liters
  2. add salt to nearly everything I consume
  3. incorporate cardio-centric exercise into my nearly-daily routine  (Except during the stomach-bug laden last two weeks.  I am tempted to feel ill and lazy, but that’s simply no fun.  So, I am trying to feel well and productive.)
  4. take my medicine, as directed, three times daily

Although the positive results of this new treatment plan exceed my highest expectations, an unexpected side-effect has me learning patience in a most unexpected way.

When a work meeting gets stressful, a family member uses a tone of voice that strikes me as unkind, or I feel someone isn’t giving me the benefit of the doubt I strive to give them, I feel my blood pressure increase.  My vision blurs, I can barely hear over the sound of my heart in my ears, it is all I can do to keep myself from sighing, just to calm my heart.  Far too often I say curt things, but sometimes I manage to, as I say, bite my tongue to save my face.

Lucky for me I am surrounded by folks who love me and understand I am trying to be the best me I can be, within these new parameters.  I’m still finding my limits… some less permissive than they once were, and some quite the opposite.  Mostly, I’m just grateful I have the energy to learn this lesson on patience, and spend more time with my family and friends (and coworkers).

At my next appointment I plan to ask Dr. GH about this whole lack of patience thing, just to make sure I haven’t completely lost my mind.

And, speaking of my next appointment… it is either on December 20th in AZ, January 10th in MN, or both dates in both places.

Confused?  So am I.

Thank you for your continued support and advice.  I am grateful for your selflessness.

Kate Update: Five Months since Mayo Clinic


It’s been five months since my trip to the Mayo Clinic in Arizona began.  Since my three weeks in Arizona, I’ve come to terms with the fact that I will, most likely, make a trip to Mayo Clinic at least once a year.  I’ve come to terms with the fact that I will, most likely, continue consuming seemingly excessive amounts of salt until it kills me, or I die of natural causes.  I’ve come to terms with the fact that I will, most likely, always require medication to tame my heart conditions and reduce my dizziness.

My health is, by no means, perfect… but I am nonetheless astounded by the scope of my improvement.

As part of my Mayo-prescribed treatment plan I have:

  1. increased my daily water intake to 4-7 liters of water
  2. added salt to nearly everything I’ve eaten since my visit in January
  3. incorporated cardio-centric exercise into my nearly-daily routine
  4. taken my medicine, as directed, for five months

I continue to strive to improve my adherence to Dr. General Hospital’s advice, and am currently focusing on increasing the intensity and duration of my exercise, and taking my medicine more consistently and at a standard time.

Thank you for your encouragement and support.  I am grateful for your perspective and your advice.  We’re lucky folks, to have a the ability to network and find answers with the click of the mouse or touch of the screen (Anyone else excited for WWDC and Monday’s big announcement?).

Look for future posts about my progress, and tips that help me improve my quality of life, despite having a chronic pain condition.

Fibromyalgia, Mornings, and Pain: Don’t Give In


Recently I’ve realized something I may have already known, but it’s struck me so profoundly I thought I ought to pass it on.

I dread mornings.  I wake up with an upset stomach, a headache, and body that hurts so badly I can barely move.  Every morning.  It is a rare occasion that I stay in bed more than one minute after my alarm sounds.  Now, don’t get me wrong.  I always want to roll over, call in sick, and sleep the day away, because at least when I sleep I don’t hurt.  But the reality is the more quickly I get up and out of bed, the more quickly I feel I can function.

And here’s the point…

How many of us give in to these awful mornings?  How many of us lose resolve after a few of these miserable mornings?  How many of us choose to go back to sleep, just to escape the pain?  Isn’t the reality that such a choice is actually inhibiting our progress toward being well and pain-free?

Too many fibro folks choose to do what seems easy (roll over and go back to sleep), or even wise, and by doing so choose to feel a bit worse each day.  We take a sick day, take it easy, and skip our exercise.  And we create our own version of the reality that so many fibromyalgia and chronic pain stereotypes are based on.  We act lazy, we sleep all day, and we think no one understands.

I am not immune to such follies.  I too give in to my pain, far too often.  But since my trip to Arizona I have rededicated myself to doing what is truly best for my body… getting up, going out, and doing something.

I need to show what I can do.

I need to see myself succeed.

I need to feel my health improve.

And I firmly believe that by doing so, I can create and maintain a cycle of improvement.  I know I will face truly challenging days.  But I pray my future lows will be higher than mast highs.  Improvement is my goal.  May it be a goal we share.

So, please don’t give in the bad days.  And if you are stuck in a cycle of submitting to the mornings you think movement is an impossibility, strive for the little victories.  Set achievable goals, hold yourself accountable (to yourself, a goal, or a loved one), and tell me about your successes.  Please.  We can motivate each other.

Is it just me? My Life with Postural Orthostatic Tachycardia


1985

When I was six months old I began to throw up and continued to do so until I became non-responsive.  I was dehydrated.  They admitted me to the hospital and said I’d be out in 24 hours… when my heart rate came back down.  It never really did, so they released me from the hospital with a resting heart rate of 160bpm.  

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