Halloween at home

Tonight, I’ll be home curled up in bed with an electric blanket while my husband attends our neighborhood party with a football fan, a ninja, and a ballerina… AND lots of candy!

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I will say, I’ve been able to go to more things this past month (YAY!), but POTS & NCS are having a bit of a heyday with my body right now–extreme fatigue, nausea, lightheadedness, and fluish feelings are making themselves known.  I’ve learned I won’t always feel quite this bad, Lord willing, but for tonight, I’m missing out.  (Oh, you might like one of my favorites posts I’ve written; it’s on missing out: Home alone.)

Yes, I did her hair (thanks to YouTube), and it was worth every moment of POTS-induced nausea!
Yes, I did her hair (thanks to YouTube), and it was worth every moment of POTS-induced nausea!

Last year, during trick-or-treating, I told myself I was dressed up as an invalid, since I had to be pushed around in the wheelchair.  This year, maybe I’ll pretend I’m a ghost. (Are ghosts invisible?  If so, that works.  Oh, wait…. I don’t believe in ghosts.)

And we're going old school (2012), from back in the day when I could gleefully beat my husband at a sack race. (Or did he let me win?!?!)
And we’re going old school (2011), from back in the day when my POTS-free self could gleefully beat my husband at a sack race. (Or did he let me win?!?!)

Happy Halloween!  Do you (or did you) dress up for Halloween?

15 years later… you’d never guess

Wow…. lives change so much, and I am so glad I serve a sovereign God!  This past weekend was my 15th reunion from college.  What a treat to see old friends and favorite professors.

You’d never guess, looking back, that I’d go to my 15th reunion in a wheelchair… but pushed around by an adoring husband and three small blessings.

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You’d never guess I wouldn’t be able to do a whole lot… or that I’d start loving and craving the beauty of surrender.

You’d never guess I wouldn’t be able to work at a “real” job… or that I’d have so much time to pray.

You’d never guess I’d spend such time grieving… or that I’d begin learning to enter into the sufferings of others.

You’d never guess I’d need so much down time… or that God would winsomely call me to enjoy Him in a deeper way.

How has your life gone differently than you thought?  Have you experienced blessings for which you can give thanks?  Have you experienced loss and suffering through which you can give thanks?  The thanks are not easy now, and grief– anger, denial, sadness — is real.  Jesus didn’t rejoice when Lazarus died or when He faced hearts of unbelief, but He did trust His Father’s plan.  We can’t drum up trust– but the Holy Spirit can generously give it.

I love Charles Spurgeon’s thoughts, below:

“In seasons of severe trial, the Christian has nothing on earth that he can trust to, and is therefore compelled to cast himself on his God alone.

“Happy storm that wrecks a man on such a rock as this! O blessed hurricane that drives the soul to God and God alone!

“There is no getting at our God sometimes because of the multitude of our friends; but when a man is so poor, so friendless, so helpless that he has nowhere else to turn, he flies into his Father’s arms, and is blessedly clasped therein!

“When he is burdened with troubles so pressing and so peculiar, that he cannot tell them to any but his God, he may be thankful for them; for he will learn more of his Lord then than at any other time.”

Is it enough?

So we DID have a great time at the mountains, but I also poked fun at my difficulties on our recent mountain getaway with my Mountain Getaway DOs and DON’Ts for POTSies list.  In reality, though, my limitations during traveling are a huge loss to me.  I have always loved to travel, and now it is much harder– don’t you always want to be in your own bed when you feel sick?

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Thanks to very generous friends, we have gone to the same mountain cabin several years in a row.  Last year, we went for my husband’s birthday, and I was grouchy and irritable, because with my new illness, I couldn’t hike, go down to the river, cook him a special birthday meal, or do much of anything. I prayed this year that God would help me be grateful for the many blessings of the trip.

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This time, though, I was sad– sad that I was stuck inside while my family explored the woods and creek.  It is good and right to grieve our losses in this life.  I am learning what that can look like.

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God broke into my thoughts, though, as I was looking at the yellow-tipped trees from the comfort of the quilt-covered bed.  I thought about how Mark and I love to make our kids happy and love to give them a wonderful life… but we don’t want our kids to have everything they want.  We intentionally deny them, at times, that new gadget, that kind-faced doll, the right-now shoes, not because those things are bad or because we don’t love our kids, but because we DO love them, because we want them to find their hope elsewhere.  We shower them with many things, many blessings… but not every blessing.  This world will not satisfy them, and any parent knows he or she cannot completely satisfy a child, no matter how many gifts that child receives.

And you know what?  I am another of those kids who can’t quite be satisfied.  A trip to the mountains is restorative… but it’s not enough. A warm, beautiful cabin with cable TV is pretty fabulous… but it’s not enough. And if I COULD hike, if I COULD stand on the bridge and throw rocks into the creek, I know that wouldn’t be enough either.  It would be fun, it would be a blessing, I would be grateful (I hope), but it wouldn’t be enough.

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I need Jesus, and as the sunlight filtered through the trees to my spot under the covers, He reached down to me with me His presence.  He will not abandon me, and He longs to be in relationship with me, His often-unsatisfiable child.  Amazing love!  How can it be?

Where do you look to be filled up?

Mountain Getaway DOs and DON’Ts for POTSies

As toddlers, our kids loved the book Underwear DOs and DON’Ts by Todd Parr.  (Okay, I kind of loved it too.  I guess underwear is funny at any age.)  Here is one of my favorite pages from the book:

From Todd Parr's Underwear DOs and DON'Ts
From Todd Parr’s Underwear DOs and DON’Ts

In the style of Underwear DOs and DON’Ts, following is my version of Mountain Getaway DOs and DON’Ts for People with POTS (or at least This Person with POTS), compiled from a recent trip.

 

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DON’T scamper on rocks at the creek.

DO watch HGTV and Food Network, read good books, and pray for dear friends.

 

Don't worry:  Mark's middle name is Safety.
Don’t worry: Mark’s middle name is Safety.

DON’T drive your kids on winding roads on a 4-wheeler.

DO surprise your daredevil husband by joining him for a short ride.

 

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DON’T use spoons cooking fabulous meals.

DO gobble up the fantastic pumpkin bread a friend baked.

 

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DON’T go to the creek to explore and throw rocks.

DO stay in pajamas ’til 3, then work on a puzzle with your family…. or make your husband laugh while he does the hard work.

 

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DON’T hike down to the falls.

DO enjoy touring a wheelchair-friendly cavern with your family.

 

Do you like to travel?  Are you a mountain person or a beach person?

Creative cuisine makes kids and Mama happy!

lunchesI have a friend and neighbor who helps our family in a creative way.  She has four young children and homeschools.  When her oldest three attend a co-op on Mondays, she packs a lunch for them AND for my children at the same time!

My kids love this.  They love that she always includes a napkin (oops! sorry I forget that, kids!), slightly different foods than we have, some yummy treat, and tailor-made foods for each of my children’s particular tastebuds.  They also love knowing they are eating a lunch similar to their friends’.

I love this.  I am usually completely wiped out on Monday mornings and getting the kids out of the door any morning is no small feat.  What a treat for me to know Mondays include a little respite for me!

Is today just another manic Monday for you?

POTS and a pedometer

For a few, POTS can be a progressive disease that gets seriously worse over time.  For most, POTS can wane and wax, although one’s baseline health may be pretty rough.  For me, I am hoping to see continued improvement over time and am working and praying toward that.

If you have a chronic illness, you might want to jot down a few notes of daily life every few months or so.  I try to write down what I do for a few days, maybe notes on eating or sleeping, and a summary of symptoms.  This helps me look back over time to see whether I’ve improved, stayed the same, or gotten worse.  Some of these observations may be subjective, so a few objective measurements may be helpful.  For example, I like to wear a pedometer now and then to track the number of steps I’ve taken.  (Thanks to my sister for giving me this one for Christmas several years ago.)

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I have no records of steps taken from Spring 2013, when I was at my worst with POTS.  However, I have records from Fall 2013 (about 2,600 steps/day), Spring 2014 (about 2,100 steps/day), and Fall 2014 (about 2,600 steps/day).  Some weeks are worse than others, so that may explain my low numbers this spring; I am glad to see I have currently increased my steps about 500/day since then.

The chart below shows how many steps per day are recommended for the healthy American (10,000) along with averages for most American men and women (info from this 2010 New York Times article)… and me .  (Note: Amish men take about 18,000 steps/day!)

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Health experts generally consider 5,000 steps per day to be in the sedentary category, so I am glad I am at least halfway to sedentary, considering my difficulties with POTS.  Although I can’t string too many steps together yet, I do like to try to take 50 here, 50 there, and hope to continue to add more in coming months.  Hey, maybe I’ll reach sedentary one day!  (Pre-POTS, I was a huge walker and would love to know how many I took back then!)

I had to laugh when Luke (8 yrs old) wanted to try the pedometer after school one day and logged almost my entire daily amount in about one hour.

Yeah, he clearly has some energy to spare.
Yeah, he clearly has some energy to spare.

Have you ever worn a pedometer or one of the new Wifi-enabled tracking devices?

P.S.  Many are still praying with me that I’ll be able to REALLY walk one day— thank you!

Dream a little dream of me

A friend recently shared with me that she dreamed that my husband and I were at the beach.  She said she could tell we were having a good time and that I looked so happy.

Okay, I loved this.  I loved it because 1) I matter enough to my friend to appear in her subconscious.  2) My husband is my favorite person in the world, and I love that we were having fun.  3) I looked so happy to her; she even said my husband and I were dancing (which is awesome, because I won’t speak for him, but I was a terrible dancer, even pre-POTS).  POTS & NCS have not completely stolen my joy, but I do have a bit less fun than I used to– and I can feel pretty crummy in the midst of fun.  I loved knowing I was carefree in her dream, especially since Mark and I have both had dreams lately in which I still have POTS (boo hoo– being limited even in your dreams is a bit depressing).

You know what, though?  As encouraged as I was by my friend’s dream, I know Someone has far greater dreams about me and all His children, dreams that will be a reality someday.

Jesus dreams of a world of peace and love– no more petty arguments with spouses, grudges against friends, hatred toward other types of people.  He dreams of a time when His children will be in complete communion with Him, enjoying Him with able, well bodies– hello, running, climbing, hiking (my husband’s excited about kayaking some amazing, never-seen rivers).  I came across this sermon by John Piper– enjoy reading more about the future of all God’s people.  This dream is coming true one day, and I am excited!

Attempting to lull the kids into dreamland
Attempting to lull the kids into dreamland

Do you tend to remember your dreams?

Biofeedback to help treat POTS – Part Two

I posted last week about biofeedback and thought I’d do a bit more.

First, let me say, I do think biofeedback would be best done under supervision by a professional; someone with POTS may benefit from going to one locally or by going to the POTS Treatment Center in Dallas, for example.  Here are three searches that may help you find a practitioner near you.

AAPB Search

BCIA Search

EEG Info Search

Last fall, I called the one (only one) near me and told her what I was looking to do through biofeedback, that is, stabilize my autonomic nervous system by training it to stay in parasympathetic mode.  She told me she wasn’t comfortable taking on someone “with my condition” (POTS) and suggested I call a medical hypnotist in a completely different state.  Hmm…. I haven’t taken her up on that yet and am still disappointed she wouldn’t see me.  Maybe I’ll try again!

Still, if you can’t find anyone near you, there are some decent resources to help you.  I gleaned from the breathing techniques taught by Dr. Andrew Weil and have used his CD a number of times to help train my breathing; here’s an article he wrote about biofeedback.  I also learned some helpful practices from a book, The Healing Code.  Also, emWave offers online seminars that can help one practice biofeedback better.  Glean what you will and ignore what you should; each of the previous espouses some philosophies with which I don’t agree.

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Holding the emWave2

For those interested in emWave, you may like to know a bit more about your choices.  I first bought emWave Pro.  You install emWave Pro on your computer, then connect your ear sensor through a USB port to see real time feedback on your heart rate variability (HRV).  I ended up returning it, because I didn’t like being tied to sitting at my computer; if you have a laptop, that may eliminate that issue.  I then bought emWave2, which I have loved.  It’s a small device that I can take with me anywhere (lying on the couch, in the car on a road trip, at a Bible study), and it shows my current level of coherence with a colored light.  I can then sync my sessions back to my computer to see how I did, or I can hook it up to my computer while I use it and see real time feedback.  (Note: Prices are much lower on Amazon.)

Since one of my goals is to help my body stay in parasympathetic mode while I am standing or walking, I like the emWave2 for its portability.  Here is what my heart rate variability currently does while I am upright (right half of the screen):

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Standing upright during the last few minutes of biofeedback

As you see, although I was in coherence/parasympathetic mode for much of my biofeedback session, as soon as I stood up and walked into the kitchen, my heart rate went up and my heart rate variability showed a lot of struggle.  If you have no idea what I’m talking about, see my first post on biofeedback to help treat POTS.

Keep in mind, biofeedback may or may not be appropriate for you, and I am not qualified to give medical advice.  If biofeedback does help you, though, let us know!

Party time!

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I have always loved throwing a party.  Growing up, I’d ask my teachers if we could have a party– using class time, of course– for Shakespeare’s birthday or the anniversary of a historical date or pretty much any other event that gave us an excuse to bring cupcakes and confetti.  In college, my roommate and I hosted parties and drop-ins in our dorm room, then in our apartment.  Over the years, my family and I have had many parties for any reason– and this is all coming from someone who can be a bit of a wallflower at other people’s parties.  I’m not the best at small talk, but I’ve always loved gathering a group of people to celebrate and enjoy each other.

Enter…. POTS.  My party-throwing days slowed down quite a bit.  I’m sure I’ll post about hospitality in the midst of chronic illness in the future (you don’t need to throw a party to practice hospitality), but today I’m going to tell you about a fun, spur-of-the-moment party we hosted last night.

A friend texted Sunday afternoon to tell me she had lots of leftover Mexican food from a lunch she’d hosted for her college daughter and visiting friends– did we want it?  I was thrilled (yay– a night off from making dinner!), and she brought it over Monday.  She wasn’t joking about “lots”– there was enough for a huge fiesta!

A good friend and neighbor’s birthday was yesterday, so I immediately asked her if she and her family would like to come celebrate over dinner if she didn’t have plans.

Boom– instant party!

God is so good.  I had just told a friend the night before that it’s harder for me to have people over now between prep, serving food (if any), being “on” for conversations, and cleanup (none of which is necessary, I will say).   Prep:  My daughter and I had decorated the dining room table with fall items over the weekend.  Toss a Happy-Birthday banner up, and the room is festive all of a sudden!  Food: There it was, cooked by a friend, ready to be reheated.  I love other people’s cooking!  Being “on”: These were family friends we were comfortable enjoying, and I really felt decent enough to talk and enjoy.  Cleanup:  My husband knew that was a concern of mine and wiped the table, cleaned placemats, and threw away all the disposable dishes we used  while we were still chatting with our friends.

I LOVE how God cares about the seemingly little things that are important to us.  I certainly don’t NEED to host a party… but what a treat for me that I could!  Happy Birthday, H!

Ephesians 3:20-21  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.

Do you like parties?  What was one of your favorites you attended or hosted?