Tag Archives: postural orthostatic tachycardia syndrome

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)

fam

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thankful Thursday

This has not been my most stellar week, beginning with preSYNCOPE-SUNDAY, then moving on to MODERATELY-hit-by-a-MACK-truck-MONDAY, oh-so-TIRED-TUESDAY, and WILL-I-get-out-of-bed-WEDNESDAY.  But today is THANKFUL-THURSDAY, so I am ready to celebrate, as I type from our cozy couch, wrapped up with a red herringbone blanket, enveloped by the foggy, gray morning.

Thursdays really are “thankful Thursdays” at our house, initiated when we realized we had WAAAAY too much complaining around here and WAAAAY too little gratitude.  At dinner, everyone gets to (has to!) say one specific person for whom he/she is thankful that week.  We also decided you can’t pick the same person multiple weeks in a row, which we enacted when a certain kid said “the garbageman” about six weeks straight.  (Hey, we ARE thankful someone picks up our trash, but let’s share the love, okay?)

Anyway, this thankful Thursday, I am thankful for these people this week:

B, who is having my kids over today and offered to drop off a Starbucks drink for me at the door (“at the door” is so nice when you don’t have energy to visit right then)

K, who came over with a delicious lunch

J, who stopped by to season and shape burger patties with the meat I’d bought earlier (and thanks to my grillmaster, M, who has done an inordinate number of dishes this week)

D, who is doing a Costco run for me

R and C, who are coming tomorrow to mop floors, clean counters, scrub bathrooms (and P, who offered to help with anything this week!); another R and C, who gave us a gift card for us all to go out one night

M and S, who checked out a bunch of library books for me to read as I rest

N and J, who brought yummy food for us

K, C, M, A, P, S, and many others, who pray for and encourage me from afar

P, who sent me the best news of the week with an adorable, creative card announcing her pregnancy

Wow.  I am truly blessed beyond measure. There are many others who have come alongside me in so many ways that I haven’t mentioned and many others who are happy to help with anything, anytime– I am so amazed and grateful!

What are you thankful for this Thursday?

15 years in… still learning to trust

Yes, Mark and I have actually been married since the previous millennium.  Wow... how's that for cool!?
Yes, Mark and I have actually been married since the previous millennium. At our reception, we totally partied like it was 1999.  Wait… it was 1999.

Some of you who know me know that my marriage is a big blessing in my life.  I am crazy about my husband, and he would do almost anything for me.  In light of that, something happened recently that surprised and convicted me.

We (meaning Mark) had to rearrange some furniture in our playroom, which left huge piles of toys, junk, tools, etc, scattered across the room in the aftermath.  We had friends coming to stay overnight and knew we needed the room straightened up for them.

Mark had a free half hour and said he would take care of it, and I offered to help.  We quickly realized this was a hard task and that we had different two approaches.  My approach is pretty much always to gather all the junk into big piles in out-of-the-way(ish) places in the room, so our friends could have the bulk of the space free.  His approach is pretty much always to actually organize stuff, find new spots for it, get rid of things as needed, etc.  Yeah, his approach is better… but then again, it takes longer, right?

As we started, he knew I didn’t have much stamina and asked me what my vision for the room was.  I told him I basically wanted stuff piled out of the way.  He nicely asked me if I would ask him what HIS vision was.

Well, I’m a bit embarrassed to admit, I didn’t WANT to ask him his vision.  I just wanted him to do MINE.

I kind of knew what his would involve, and I was scared we wouldn’t have the time and that I wouldn’t be able to help make decisions about what to do with stuff (I’m terrible at that).

However, we’ve been at this for fifteen years, so I nervously asked him what his vision was, as he’d kindly requested.

You may be able to guess that his vision was indeed to deal with all this stuff, to put it away properly, and to make the room wonderful for our friends.  He then invited me to go read a book or rest in another room while he rocked it…. and I took him up on his offer.

Not long after, he’d made a beautiful, tidied, more organized space for our out-of-town guests.  Thank you, Mark!

His vision wasn’t to harm me, but to help me.

I was grateful, and I was also convicted that I didn’t really want to trust my serving, others-focused, hard-working, kind, putting-Kristi-first husband of 15 years.  It helped me see that I also don’t really want to trust my good, sovereign, powerful God.  I am nervous about things not going my way and am willing to do a worse job at something, with hasty shortcuts, rather than surrender and sit back and watch God work.  Sometimes His actions seem messy, confusing, unclear, time-consuming, scary.  But isn’t His restoration beautiful?

I don’t want to be unable to walk far or stand long.  I don’t like not knowing His plan for my healing. I don’t desire to be dependent on others.  BUT GOD, in His rich mercy, has plans of redemption beyond my wildest dreams.

Jesus will one day “present the church to himself in splendor, without spot or wrinkle or any such thing, that she might be holy and without blemish” (Ephesians 5:27).  Husbands are called to love their wives this same way– I’m thankful for a husband who desires to do that!

Will you surrender your fears and your desire for control and let God work His beauty in you?  Will I?  Let’s do this together.

I love this pre-POTS picture, when Mark let me beat him at a sack race.  He knows I like to win... and I'm pretty excited, even if he let me win!
I love this pre-POTS picture, when Mark let me beat him at a sack race. He knows I like to win… and I’m pretty excited, even if he let me win!

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!

 

A little taxed…. but no more!

Several of you far-flung blog readers have checked on me recently in my posting absence.  Thank you!  I am glad to report I am here, doing about the same as I have been.  Really, I only have one thing to blame for my silence:  TAXES.  However, I am proud to report that as of Saturday, I completed our taxes; I took them to the post office this morning; and now they are a thing of the past!

I have mentioned before that I have limited physical energy to spend; I also have limited mental energy. Doing our taxes took weeks for me, as I had teeny little chunks of mental-energy times to work on them little by little. (Plus, time on the computer makes me feel worse, so it was mostly limited to tax-doing.) I know I’m not alone in taxes taking forever, but the mental-energy thing feels a bit different. For example, I recently agreed to help our community swimming pool with a small aspect of membership: I spend 30-60 minutes a week on it, and it feels like I’m maxed out. (And no, the word “minutes” wasn’t a typo for “hours”!) In this picture, I’m organizing a drawer stuffed with papers from the past six months or so, and it will take me several days to do it.

paperflood

I’m certainly not alone in things taking forever– those of you working, caring for others, volunteering, homeschooling, single parenting, homemaking, or doing any number of things only have limited time for many things.  It just feels strange for things to take so long when I have so much time!  But in some ways, I don’t really mind that all this takes a while (having little ones in the house all day, every day for years gave me some experience with slow-task-completion that I know many of you mamas are still dealing with!); however, I just need to make sure I keep my schedule pretty clear so it doesn’t get overwhelmed. This is a stark contrast to the full, fast-paced life I used to have!

By the way, did you know that people with POTS tend to have been high achievers before they became ill? Strange but true (at least anecdotally– but occurring often enough to be mentioned in Mayo Clinic literature on POTS commonalities). I’ve also read that people with POTS tend to be women, often tall and on the trim side, often fair-skinned with blue eyes.  Sounds familiar! Hmmm… maybe I should work on my tan this summer, fill up on junk food, get colored contacts, be sure to wear flats, and it’ll all be a thing of the past.

Do you like doing taxes? I actually don’t mind too much, especially when we get a little refund! Anyone getting a refund this year and doing something fun with it?

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?

Read all about it! Finding POTS in the News

When I first had symptoms of POTS– lightheadedness, unusual fatigue, inability to speak due to brain fog, etc– they weren’t all day, every day, and I initially dismissed them as flukes.  Had to sit down in the pharmacy line because I was about to pass out?  So weird!  Wobbly walking down the church hallway?  So crazy!  Can’t get words out?  Super bizarre!  Aw, I’m sure it’s nothing.

When symptoms became constant and inescapable and I was diagnosed with POTS, I’d never heard of it.  It sounded kind of made up to me.  I mean, Postural Orthostatic Tachycardia Syndrome… what does that mean, anyway?!?  (Here’s what Wikipedia says— hmmm… that does sound like what I have.)  I was slightly reassured to find that Mayo, Vanderbilt, and the Cleveland Clinic all treated it– I mean, those are reputable establishments– but I thought it strange that closer facilities like Emory, Duke, and MUSC did not and that a number of my doctors seemed to know nothing about it.

Headed to Vandy in summer 2013 to figure out WHAT was going on... maybe this is all a fluke!
We headed to Vandy in summer 2013 to figure out WHAT was going on… maybe this is all a fluke!
Well, standing upright with this modified tilt table test IS really challenging as I feel absolutely horrible.  But, hey, who could stand up for 10 minutes anyway?  (Oh, wait, my husband says most people can.)
Well, standing upright with this modified tilt table test IS really challenging as I feel absolutely horrible. But, hey, who can stand up for 10 minutes anyway? (Oh, wait, my husband says most people can.)
So my heart rate jumped to 197 when I was upright.  Well, an anti-POTS cardiologist did say I'm probably just all riled up.  Yeah, I bet I'm super riled up.  I bet that's it.  I'm sure nothing's the matter.
My heart rate jumped to 197 when I was upright. Well, an anti-POTS cardiologist said my super high heart rate means I’m just all riled up. Yeah, I bet I’m super riled up. That’s probably it.   I’m sure nothing’s the matter.
See?  Done standing!  And now I'm all better!  Nothing like celebrating your 14th anniversary with lots of fun tests!
See? Done standing! And now I’m all better! Nothing like celebrating your 14th anniversary with lots of fun tests!

It’s taken me quite a while (understatement) to accept 1) that POTS is real; and 2) that I have it (actually, I still am not thoroughly convinced on a given day– I mean, really? This is so weird!).  I suppose it’s a mark of my culture and generation that media portrayals of POTS make it seem more real to me.

Thus, I keep a running list of POTS in the News on this site.  The latest mention I’ve found is that Ella of the famous Deliciously Ella recipe blog and website is doing much better after a 2011 diagnosis of POTS, according to this article in the UK version of the Huffington Post.  She credits a lot of her improvement to the healthy, real, whole foods she eats.  (Just take that with a grain of salt— ha ha– POTS joke.)

I haven’t made any of her recipes, but Ella’s website is beautiful and inspiring.  Do you have any favorite foodie sites?

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!

Barely out of the woods

So, a friend noticed I haven’t been posting much.  I felt a good bit better in early to mid-January, so I was enjoying not thinking about POTS… then I felt worse and didn’t feel up to thinking about posting!  Deep thoughts may come again one of these days, but in the meantime, here’s a post I drafted a while ago.

In case you haven’t heard, the flu is making its rounds.

A friend’s husband had the flu not too long ago and she told me, “He took a shower, and afterwards he was very dizzy and completely worn out.”  She also said, “I tried talking to him a little, and he could hardly respond, then just completely zoned out.”  Then, she mentioned, “A couple days later, he felt a little better, but after he carried a basket of laundry up the stairs, he said his heart was racing like crazy!”

I was surprised by how familiar all of that sounded to how I can often feel with POTS & NCS.  It was kind of a wake up call to me that sometimes I need to cut myself a little slack… there IS something not quite right with my body, and I don’t always need to try to live (or expect myself to live) like I’m well.

Then again, I want to push myself and try to do a little more than I think I can.  Ahhh… is life all about learning balance?!?!

I’d expressed a couple months ago to my doctor that I wanted to do more with my family, get more involved at church and the kids’ school, think about a little work here and there, etc.  She looked at me, shocked, and said, “You’re barely out of the woods!”  It was good for me to hear someone telling me to continue to take things slowly and not rush into a life of activity, seeing as when I feel a tiny bit better, my mind wildly starts to think of all the things I’d like to do.

I’m back to not feeling so hot, so I am going to cozy up on the couch with a good book… or maybe a rerun of “Chopped” (I love streaming Food Network’s free full episodes online!)… and dairy-free, sugar-free, taste-free (oops, didn’t mean to say that!) hot cocoa.

What’s your favorite winter-time drink?

For all you blizzard-dwellers:  We DID vacation in the Hamptons once... but it was in February.  Here are the boys 7 years ago this month!
For all you blizzard-dwellers: We lived the snowy lifestyle for 8 years (4 in the Midwest, 4 in New England), and we DID get to vacation in the Hamptons once… but it was in February. Here are the boys 7 years ago this month living it up on a snow-free but very cold beach in the Hamptons!