Tag Archives: Fun with POTS and NCS

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!

 

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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!

fambday

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.

bdayicream

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!

Field (trip) of dreams

Okay, maybe this seems cheesy, but I always wanted to be a wife and mom when I grew up, and once I became a mom, I always wanted to go on field trips with our kids when they reached school age.

When our oldest was almost 10, I finally helped with one in the spring of 2013, per his request.  Unfortunately, I was developing POTS and NCS (but in some denial about it) and ended up almost passing out after standing in line in the restroom.  (I didn’t know then that being upright now causes blood to pool in the lower half of my body and not enough blood reaches my brain.)  I had to be wheeled across the host school’s gym (this was at a competition two hours away) in an office chair to the athletic trainer’s office while I lay on a mat for quite some time and tried to convince them NOT to call the EMTs. That put a damper on the field trips for a while.

Do I LOOK like I need an EMT?  No, I do not; thank you very much.
Do I LOOK like I need an EMT? No, I do not; thank you very much.

Fast-forward eighteen months, and VOILA! I recently went on a field trip with our middle son!  POTS and NCS has somewhat stabilized (at least some of the time), due to treatment, and the field trip location was a quiet, small, local museum.  I knew it would be cool enough and not too overstimulating, and I thought I could handle it.  My biggest fear was almost passing out, followed by severe body tremors, in front of the schoolchildren (always a little disturbing), so I asked my Bible study group to pray specifically that would not happen.  Unfortunately, I had several bad spells of presyncope the weeks before the trip, so I told the teacher I needed to be an “honorary” chaperone and couldn’t be counted on to help in case I needed rest time during the trip.

Armed with salty electrolyte drinks, I was ready to go.  I met the class at the museum, and my son rushed to meet me to help wheel me into the building.  I always think my kids will be embarrassed to have their mom in a wheelchair, but he was very proud to be able to push me around.

I find it fairly funny that my younger two can't actually SEE where they're going when they push me.
I find it fairly funny that my younger two can’t actually SEE where they’re going when they push me.

The whole event went just fine.  I guzzled the drinks and did deep breathing and basically tried to preserve energy the whole time and was thrilled to make it through without any visible drama.  Although I had to go straight home and rest, rather than continue with the class to a picnic lunch at a nearby park, I was thankful to experience a dream come true! (How’s that for cheesy?)

fldtrip3

My favorite quote of the morning:  Luke’s class had seen me at school a couple times without a wheelchair, since I am often able to walk short distances without getting too close to passing out, so they were surprised by its presence.  One boy said to my son, “Why is your mom in a wheelchair?”  His answer, “She has POTS.”  End of conversation.  Like that kid had ANY CLUE what my son was talking about.  Totally cracked me up.

What were some of your childhood dreams?  Have you gotten to experience any?

Zooming to a neighborhood near you (well, near me)

Now that I have POTS & NCS, one thing I REALLY, really miss is walking around our neighborhood (well, walking anywhere).  I love walking with Mark, walking with the kids, walking with friends, walking by myself.  Sometimes I get a little stir-crazy and just want to get out in the fresh air and walk!

My imagination was stirred recently when I came across something on Craigslist, this kids’ electric scooter:

scooter1

Hmm… maybe on something like this (small profile, quiet, stable, with a seat), I COULD get back out there and explore the neighborhood with friends and family or on my own.

Let the Googling begin!  I quickly found this option, which my husband and I tried out at Academy Sports.  Turns out, the cutesy-factor meant it REALLY was for kids– my knees were practically bent up to my chin.

scooter2

How about this one?  Could be the winning one, but we want to try it in person; it might require me to be TOO upright and use my core to balance too much.

scooter5

Now this one screams comfort and would be perfect (reclining seat, no need to balance, still quiet and can get up to speed), but it also might look a teensy bit too old-school for me, plus it comes with a hefty price tag.

scooter3

At this point, we’ll just go straight to a Harley.  Can’t you see it?

scooter6

So, in the meantime, I got this sweater last weekend and wear it with pride.  Guess this’ll do for now!

P.S. How do you like the pose?  I think every 20-something in America knows how to rock it, so my 36-year-old self thought I'd give it a try.
P.S. How do you like the pose? I think every 20-something in America knows how to rock it, so my 36-year-old self thought I’d give it a try.

Be on the lookout one day for me to be zooming in a neighborhood near you!

 

Beauty in the midst of illness

Have you noticed illness can be kind of, well, ugly?  The physical aspects of sickness can often be a bit– or a lot– yucky, but how about all the paraphernalia:  the bedside potty chairs, the countless brown pill bottles, the unattractive mobility items?  I mean, where’s the Anthropologie of medical supply stores?  Where are the ikat-patterned ostomy bags, the polka dot breathing masks, the glitzy compression stockings?  And I’m actually not joking.

I have always loved having beauty around me, and a lot of my thirty-something self has rebelled against the unattractiveness that has attached itself to my illness.  In fact, when I don’t feel well, I don’t want to feel worse by having to use unattractive things– I am cheered up by lovely things!

Now this notion is ridiculous to some, and that is totally fine.  You may not be at all inspired by beauty but may love delicious food, fabulous music, stimulating conversations, or something else, and those things may be a big boost to you when you are unwell.

For me, I got tired of having my bathroom counters lined with ugly, junky bottles, so here is my dollar-store solution:

IMG_6104

I refused to use a shower stool, because its unattractive nature only made me more bummed about my limitations… until I found this one:

stool

As soon as we bought my wheelchair, I asked a talented friend to make a cover for it, because I just couldn’t do navy blue vinyl:

wheelchair

Everyone’s different on this:  A manicure (see below) makes me more stressed than relaxed (aaaugh! a chip already!), and your navy blue vinyl wheelchair doesn’t bother me in the least.  I also realize, with this post, I am at risk of coming across as a high-maintenance diva, but please know that I would just love to encourage you in enjoying whatever God-given gift (art, the outdoors, dear friends, floral arrangements) gives you a boost.

Yesterday, I watched the last episode of Call the Midwife, Season 3.  In it, Chummy’s very ill mother expresses a desire to have a manicure, knowing beautifully painted nails will help her maintain a sense of dignity.  When Sister Monica Joan encourages Chummy to paint her mom’s nails, Chummy says, “I can’t.  It seems frivolous when there’s so much else to do.”  Sister Monica Joan replies, “There’s nothing else to do.”

I love that.  Just then, painting her nails was the best way for Chummy to love her mom.

What encourages you in the midst of illness?

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!

IMG_6201

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?

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?

DSCN6640

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.

DSCN6626

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.

DSCN6624

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.

DSCN6657

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.

 

mtnrockspray

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.

 

mtnmeals

DON’T use spoons cooking fabulous meals.

DO gobble up the fantastic pumpkin bread a friend baked.

 

mtncreekpuzz

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.

 

mtnfallscavern

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?