Tag Archives: Chronic Illness Survival Skills

Keeping on keepin’ on

Today is my daughter’s seventh birthday, and the start of another new year in her life.  It is also the last post for me on Even Rocks Cry Out, as I transition on to other things.  I am so thankful for all who have read and encouraged me through each season of this past year.  THANK YOU for cheering me on!

I have felt a bit worse for the past month or so, and a friend reminded me that I felt worse last spring… and the spring before!  I hadn’t realized that, and she reminded me that I had felt discouraged each spring, then I came through it.  That was helpful!  In the same way, it’s been helpful for me to write these posts so I can look back on tangible acts of God’s faithfulness and mercy and your support.

As far as transitioning, I don’t know exactly what’s next, but I look forward to more resting and praying, more time with the kids home this summer, maybe a trip to the Mayo Clinic (still haven’t heard!), and most immediately, exercising “every day in May.”  K and S and I have exercised together (via Facebook accountability!) from hundreds of miles apart every day in May for many years (I took a couple years off), and I’m ready to join back in, although their exercise includes running and planks, and I am hoping to do at least 4 minutes a day on the recumbent exercise bike.  Hey, just start where you are, right?

I am thankful to be through the chaos of diagnosis and initial discoveries in my journey with POTS and NCS and feel like I’m now into the hard part of persevering… but God specializes in that and will see me through this and you through whatever trials you now have as His child.

“Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us,  to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen!”  (Eph. 3:20-21)

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No post for you!

This week, I am getting ready for my daughter’s birthday, anticipating a visit from my in-laws, reveling in the stunning spring weather, and pretending I don’t have allergies.  I am enjoying visits from friends, praising God for His love, begging Him for mercy and perseverance, and eating meals outdoors.  I am hoping to go to a big night at the kids’ school and hearing the birds go crazy. So, no post for you!  Go get yourself a bowl of soup and enjoy the spring.

Wax on, wax off; oops, I mean, Breathe in, breathe out

Have you heard of 4-7-8 breathing?  It’s all the rage these days.  It’s free, you can do it anywhere, and you have all the tools you need to do it!  What’s more, proponents say it will lower stress, help you fall asleep quickly, clear toxins from your body, and bring world peace.  (Oh, wait, no, not sure about that last part.)  Seriously, though, it is supposed to bring a number of health benefits.

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I’ve tried this breathing style off and on for some time and ended up coordinating words to go with it.  I love chanting the words in my mind, because 1) I don’t have to count; 2) it reinforces what I believe.  So here’s 4-7-8 breathing, Kristi-style.

The idea behind the counting is to inhale through your nose for four counts; hold that breath for seven counts; let it out through your mouth for eight counts.  Repeat this 3-4 times, a few times each day.  So, with words, it’s like this:

Breathe in through your nose as you think: “You-are-sov’-reign.”

Hold your breath in to: “You-will-ne-ver-leave-me,-Lord.”

Exhale through your mouth to: “I-sur-ren-der-and-I-wor-ship.”

(Don’t say any of it out loud; just think it in a rhythm.)

How’s that for a boost and encouragement in stressful moments or any old time?

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Speaking of breathing, I’m loving my new yoga class!  It meets once every week or two in the comfort of my own home, thanks to modern technology (does a DVD player still count as modern technology?).

My hope is to gain flexibility and strength, but I am also seeing that yoga is fantastic for helping one learn to maintain good breathing in a variety of challenging body positions; the idea is that one could translate that to good breathing in a variety of challenging situations (like standing and walking, for me), not just poses.  The DVD I’m using has completely separated yoga from its ancient religious traditions and Westernized it, which works for me.

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Have you tried yoga?  Do you like it?

P.S. I may or may not have been harmed in the creation of these photos.  I may or may not ever be able to do the poses in these photos.

P.P.S.  What’s the deal with the breathing?  I still think focused breathing could significantly affect my quality of life with POTS & NCS; see my posts on biofeedback here and here.)

All thy sorrows soon shall end

Who, as I have, has ever felt comfortless, sorrowful, and afraid?  Who feels alone, lost, and broken?

Someone Else knows just what that is like.  “For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin” (Hebrews 4:15).  Tomorrow is Good Friday, and it is so good, because of something so bad.  Our High Priest bore wrath, agony, trials, abandonment, betrayal, that His children might not have those things poured out on us for eternity.

I came across these prayer cards, filled out by the kids last year on Easter.  Their prayers WILL be mightily answered one day!
I came across these prayer cards, filled out by the kids last year on Easter. Their prayers WILL be mightily answered one day!

I’ve had the following lyrics taped on my kitchen window for a long time now, and I hope they will encourage you.  They are two of the verses in John Newton’s “Pensive, Doubting, Fearful Heart.”

Fear thou not, nor be ashamed,
All thy sorrows soon shall end.
I who heaven and earth have framed,
Am thy husband and thy friend.
I the High and Holy One,
Israel’s GOD by all adored,
As thy Savior will be known,
Thy Redeemer and thy Lord.

Though afflicted, tempest-tossed,
Comfortless awhile thou art,
Do not think thou canst be lost,
Thou art graven on my heart.
All thy walls I will repair,
Thou shalt be rebuilt anew,
And in thee it shall appear,
What a God of love can do.

Happy Easter from us to you!  (No, I'm not ahead of the game.  I have no idea what anyone will be wearing Sunday, but enjoy a 2014 pic!)
Happy Easter from us to you! (No, I’m not ahead of the game. I have no idea what anyone will be wearing Sunday, but enjoy a 2014 pic!)

Take a few minutes these next few days to meditate and worship.  And, most of all, I dare you to HOPE.  Easter is coming.

And let's be honest:  A pic of just the kids is way cuter.
And let’s be honest: A pic of just the kids is way cuter.

Growing in confidence

Our son has been sick for the better part of a week now (flu-like symptoms; nothing serious) and often mentions how bad he feels, how he wants to get better, and how he can’t do much.  He lies around a lot and when he’s up, he walks around droopy, pasty, and lethargic.  It all sounds a bit like my own life, I will say!

However, although I certainly still have my share of walking around droopy and telling my family I feel bad, I realized I have gained some confidence, too.  Although I have not gotten way, WAY better, I am getting kind of used to being sick and am definitely better at making decisions that enable me to maximize my days and doings.

I know, now, that on a good day, I can mop a section of the kitchen floor before sitting to rest in the family room for a while until I do the next one.  I know now that I can probably chat perkily for a while at a party if I make sure I’m seated and am drinking a glass of salt water.  I know to rest before certain big events and avoid other ones altogether.

I’m also cautious about certain things:  I’m still gunshy about walking the entirety of our church, because I’ve gotten too close to presyncope too many times.  I’m still hesitant to give my son a buzzcut while I’m standing, because I grow too lightheaded.  I’m still careful to have a stool in the kitchen so I can sit down at a moment’s notice while prepping meals.

I have made progress in adapting to my altered lifestyle with a chronic illness; however, I would like to understand more about how to live with POTS and NCS.  I mentioned that we are considering having me go to a three-week program at the Mayo Clinic for people like me who have autonomic dysfunction.  Today, I will undergo the last local medical tests needed for Mayo’s evaluation of all my records, then I should hear in a couple weeks whether they will accept me as a patient.  I’ll keep you posted!

Have you had to adapt to a very different life than you thought you’d have?  How have you done that?

I can even play mini golf if I just do a few holes and sit down in between-- the pasty face shows now's the time to sit!
I can even play mini golf if I just do a few holes and sit down in between– the pasty face shows now’s the time to sit!

Top Ten List of Blessings from POTS/NCS

Sometimes it’s easy for me to focus on the limitations POTS/NCS causes.  After all, I feel and experience them throughout the day, everyday.

However, I’m also beginning to be able to see more clearly the blessings, yes, true blessings, this illness has brought into my life.

In random order, here is my TOP TEN LIST OF BLESSINGS FROM POTS / NCS:

10.  A more slow-paced lifestyle.  I am beginning to see that maybe I was a little too busy back in the day.

9. More compassion for those who suffer.  I have a long way to go, but I am beginning to truly understand, in some ways.

8. Greater dependence on God.  I need Him every hour.  Literally.

7.  Fewer wrinkles.  How’s that for a perk?  A friend mentioned once that my face looked so great, and I realized my new, low-stress life does seem to be stopping my wrinkles in their tracks.

6. Seeing God at work, actively caring for me and our family.  He has not abandoned us.  (I can’t wait to read the 2015 Blessings Jar on New Year’s Eve.)

5. Our kids seeing Mama can’t do it all and needs their help, thus they are getting good practice serving.  Our oldest son got the CLEANING AWARD at a recent youth group retreat.  (Yikes… hope that wasn’t too embarrassing.) Turns out, he rocked while cleaning their cabin, after meals, etc, maybe partially because all three kids now know their way around some toilet bowl cleaner, dustpans, Windex, you name it.

4. Noncompeting schedules in our marriage, since mine is quite free. (Not a necessity, but I’m enjoying the blessing aspect.)

3. More of my physical presence around the house for my family.  While they’re here, I am not often out and about doing errands, meetings, get-togethers, etc.  I think they really like this. (Ditto, parenthetical statement above.)

2.  Seeing God’s people help in so many ways.  This is a huge encouragement.  After we recently enjoyed a fantastic meal someone brought, I told Mark, “This makes being sick a lot more tolerable.”

1.  Freedom to wear cute shoes that may be too big, too small, or a bit uncomfortable– and not have them wear out– since I don’t walk that much.  Ladies, this is AWESOME!  My shoes always look brand new.  (The scuff marks below are certainly all from previous owners, I’m sure!)

"Kristi, you are so good at arranging your pristine shoes, you should be a display stylist," said no one, ever.
“Kristi, you are so good at arranging your pristine shoes, you should be a display stylist,” said no one, ever.

Hey, when you find a cute pair, it’s nice not to have to worry about pesky details like whether the shoe actually fits!

 

God’s GOT this!

So I was going to do a long-delayed blog post the other day.  I summoned up my remaining shreds of energy, turned on the computer, found a cute picture, and… Internet Explorer would NOT load.  I mean it!  It was not going to open.  I clicked, double-clicked, right-clicked, went thru various menus– NO SOUP FOR YOU! (I mean, no Internet for me!)  I couldn’t get online at all.

Hence, no blog post.

God cracks me up.  For a couple years now, He has been “canceling” things that I put on my agenda. We signed up to host missionaries one weekend– nope, sorry, turned out they have relatives in town.  I tried to sign up to bring a new mom a meal — oh, too bad, turns out the meal plan was either deleted or was unavailable to my eyes only.  We made plans to keep a young couple’s baby so they could have a date.  Oops, surprise, their inlaws showed up in town that afternoon to take the whole family out– no babysitting happening.

One “good” thing after the next that I’ve tried to do has been canceled over the last couple years. I’ve gotten the hint and try to make my own “helpful” plans a lot less often, for this current season.

I truly believe God is telling me, “I’ve got this! I do not need you to do all sorts of things to enact My kingdom purposes.  I love you too much to let you think you can find your worth and identity in DOing.  Just be– be mine.”  (Seriously:  One particular time as I cried out to Him in frustration at being unable to DO, I heard Him respond to my heart, “Kristi! I’VE GOT THIS!”)

I love it. He is helping me surrender teensy bit by teensy bit.

Where do you need to surrender and BE?  Or, where might be God asking you to step out in faith and DO?

“Be Mine” this Valentine’s Day

Sometimes, when you are suffering, you may feel as though God doesn’t love you.  He may seem far off; He may seem to have it in for you; He may seem out of touch with your struggles.

What if, though, your suffering is a sign NOT of His lack of love for you, BUT of His GREAT LOVE for you?  What if God loves you so much that He decides for suffering to enter your life so that He can draw you close to Him, so that He can wean you from the siren calls of this world and open your eyes to the greater call of His plan?

Will He help you say, with Paul, “I want to know Christ—yes, to know the power of his resurrection and participation in his sufferings, becoming like him in his death, and so, somehow, attaining to the resurrection from the dead” (Phil 3:10-11)?  We do not serve a God who is unfamiliar with suffering but One whose earthly purpose in life included suffering out of obedience, that He might reunite us with the Father.

I love how Laura Story captures some of this thinking in her song “Blessings.”

Even more, though, I love “O Love that Will Not Let Me Go.”  I have, many times, put this song on repeat and just blasted it.  I hope it encourages you– I love these two verses in particular:

O Joy, that seekest me through pain,
I cannot close my heart to Thee;
I trace the rainbow through the rain,
And feel the promise is not vain
That morn shall tearless be.

O Cross, that liftest up my head,
I dare not ask to fly from Thee;
I lay in dust life’s glory dead,
And from the ground there blossoms red
Life that shall endless be.

This has been, for years, one of my funeral songs– you know, a song you want sung at your funeral.  If you have a funeral song, what is it?

Where do you see God’s love in the midst of the sadness, the loneliness, the injustice, the horror?

“Forget the former things;
    do not dwell on the past.
 See, I am doing a new thing!
    Now it springs up; do you not perceive it?
I am making a way in the wilderness
    and streams in the wasteland.”  (Isaiah 43:18-19)

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Happy Valentine’s Day!

Heading to the movies with POTS

My husband loves movies; I like some of them okay but get a bit antsy sitting through them, and now that I have POTS, the whole movie theater experience definitely brings on sensory overload that can take a while to recover from, as I unfortunately discovered this past summer when I took the kids to a dollar movie one morning.

So, my husband found it awesome when I surprised him with a trip to a REAL movie last month, and he found it fairly hilarious when I sat down beside him looking like this:

Kristi at the movies...with POTS!

Hey, it worked!

Here’s his caption:  What it takes to “endure” a movie with POTS/NCS! She was completely exhausted, but she was not “broken”!  (Ha ha– we had gone to see Unbroken.)

I hope you’re liking these posts about Fun with POTS.  More to come, Lord willing!

It’s my birthday, and I’ll smile if I want to

It IS my birthday, and I AM smiling!  Maybe you don’t always feel ready to party with POTS, but be encouraged by the fun I’m having on my birthday weekend.  A change of scenery and something to look forward to can make a huge difference for someone with a long-term illness.

Mark surprised me yesterday with a trip to the Biltmore Estate to see a display of costumes worn in Downton Abbey– yes, the REAL costumes actually worn by Lord and Lady Grantham; Mary, Edith, and Sybil; Lady Violet; and Matthew and Branson from Seasons 1-4.  There were dozens to see– SO cool.

The first two floors of the Biltmore were wheelchair-friendly, and we even got to ride the oldest continuously running elevator in the Southeast, complete with original motor from the 1800s.  How’s that for a perk (seeing as it didn’t break down while we were on it)?

What is this pose? !?! Is it 1995, at the prom?  We just need a little lattice to really rock it out.
Thank you, Biltmore photographers, for posing us like we’re at the prom in 1995.  Wow.  If only we had a little lattice to really rock it out….

The main tricky thing about wheelchair adventures (besides nausea) is that you see everything from about the height of an eight-year-old (definitely different for me, since I’m almost 5’9″ and used to looking over people’s heads)… but the Biltmore was well prepared and even know exactly how many steps it would have taken me to go up to the third floor (I’d been there before, so I passed this time but got to watch a video that displayed the rooms I could not access).

Mark was awesome.  He planned the whole thing and even scheduled it so we didn’t spend too long there, knowing I’d wear out quickly, and had us back to our hometown to have a restful afternoon at home.  (Full disclosure:  It was 3 p.m. and I crawled right into bed.) He tells me he has more surprises in store this weekend… I’m excited!

I wanted to make a big chocolate chip skillet cookie and homemade ice cream on my birthday (Yes, I could buy them, but where does one buy sugar-free, gluten-free, dairy-free desserts?  That’s called fruit.), but considering how I felt and deciding to conserve energy, I only made the ice cream, below.  No problem:  I added chocolate chunks to get the feel of the whole dessert thing.  This recipe is adapted for our family’s current digestive needs using the general idea of the dairy-free ice cream recipes on The Spunky Coconut.  Mark and I thought it was pretty much the most amazing thing ever; two kids ate it… with tons of Hershey’s syrup on top… and one kid didn’t eat it at all.  Hey, more for us!

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Birthday Butter Pecan Ice “Cream”

1 can light coconut milk
1 frozen banana
3 Medjool dates, soaked in 1 cup almond milk
1 Tbsp gelatin, dissolved in 1/4 c boiling water
big dollop sunflower seed butter
dollop vegan butter, cooked to attempt a faux brown butter
almond and vanilla extracts, to taste (more almond than vanilla)
3-4 drops liquid stevia, to taste
salt, to taste  (you want butter pecan ice cream to taste a bit salty)

Combine all (including the liquid in which the dates soaked) in a high-speed blender; adjust flavorings, sweetness, and salt.  Chill in the refrigerator for at least an hour.  Pour into prechilled ice cream maker and process, according to manufacturer instructions.  Toward the end, add chopped pecans (and maybe dark chocolate chunks).  YUM!

Notes: Full-fat canned coconut cream tastes better and gives better consistency; also, it tastes better if you use more dates (8-10) and eliminate the banana.  We used sunflower seed butter, but almond butter would be better.

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Cards, texts, and Facebook messages from friends and family are making my day fantastic.  Never underestimate how encouraging a few kind words can be!  Thanks to all who are helping me celebrate!

P.S. Lest you think our kids are deprived, neighbors we haven’t seen in months just rang the doorbell– I opened the door to find them bearing a large container full of gluten-full, sugar-full, dairy-full cinnamon rolls.  They had no idea it was my birthday– and the kids will get to, first-hand, TASTE AND SEE THAT THE LORD IS GOOD!