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?

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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?

“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!

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!

 

Where to go from here: seeking further improvement with POTS

As I mentioned in my last post, I’ve had some improvement with POTS and NCS.  My family, then, was disappointed to see a resurgence of exhaustion and lethargy this weekend, perhaps due to my presyncope episode Friday.  When I’m feeling better, I’m more physically active, more talkative, more fun, more creative, more energetic– when worse, I’m more serious, more sleepy, more sitting-around, more blah– or I use tons of energy trying not to seem that way!  POTS is unpredictable.  It’s hard to live with the lack of predictability, and it’s hard for my family not to know how I’ll be doing or what they can count on from me.

We love riding bikes together (pictured, Chattanooga, 2012).  This weekend, I rode my bike 5 minutes with my family!  HUGE TREAT!
Mark and I have always loved riding bikes together (pictured, Chattanooga, 2012). This weekend, I rode my bike 5 minutes with my family! HUGE TREAT!

That said, I’d love to see further improvement, so where do we go from here?

God alone brings healing.  I found it interesting that upon the completion of my 100-day-wellbeing-challenge, I didn’t feel way better.  I have felt better the past couple weeks, though, without obvious cause, which reminds me God can bring healing at any time, for any reason.  He can (and does) also sustain me and our family through the rough times.  I am thankful, though, that there are earthly measures and medicines that can indeed help bring healing.

To this point, I have mainly sought practical improvement through Western, conventional medicine.  I wanted to exhaust my accessible resources (and take advantage of our maxed-out deductible!) before trying other approaches.  I have also only wanted to try one type of potential improvement at a time to see what helps.  I mention treatment that has helped thus far in a previous post.

I am ready now to explore more options to help me get to the next level of functioning, Lord willing.  My top choices are:

1) A functional medicine doctor.  These M.D.s would seek to discover and treat the underlying cause of my autonomic dysfunction.  No one seems to know why I developed POTS, and perhaps they could find out and treat it.  We do have a few local functional medicine doctors, but I’m not sure how familiar they are with POTS.  Also, functional medicine doctors don’t tend to accept traditional insurance.  This could be a good option, though.

2) A naturopath.  Not medical school trained, this practitioner would try to find imbalances that could be corrected or improved, often through natural and holistic treatments.  I’m not opposed to this, but I’m not sure how likely I am to find significant improvement.  Could be worth a try.

3) Mayo Clinic’s Pain Rehabilitation Center.  This is my top choice right now and the one we are currently pursuing.  Despite its name, this 40-year-old clinic specializes in helping people not only with chronic pain but also with autonomic dysfunction (which is what POTS and NCS are) regain an active life through a myriad of treatments, from physical therapy to biofeedback to exercise training to medicine adjustments to nutrition and counseling.

I spoke with the Pain Rehab Center, and they told me up to 8 specialists would be working with me every day for more than three weeks.  I am excited that their extensive knowledge about POTS would help me when we encounter roadblocks.  (When this happened locally when I did months of cardiac rehab and PT, we just came to dead ends.)  The Pain Rehab Center is currently reviewing my medical info to see if they’ll accept me.

The downside:  It IS a long program (about 25 days) and far away (Rochester, MN!).  We mentioned it casually to our kids when they were disappointed to see me doing worse.  I (a stay-at-home mom) have never been away more than 3 nights (three times, in 11 years) so this long-term plan sounded a bit scary to them, and one asked, “Is it guaranteed to work?”  I thought that was a great question.   We had to tell them it isn’t guaranteed but I have spoken with the mother of someone who completed the program and heard many success stories from her.

Here’s a YouTube video of a young man with POTS who completed the pediatric version of the program.  He captures many of my own thoughts quite well!

So, we’ll see.  We are trusting in God to lead us and work out the details, according to His will.  Thanks for praying for us along the way!

Alive and well this New Year

Friends, I have not dropped off the face of the earth.  I’ve been avoiding the computer like the plague (because, when I use it, I often feel like I have the plague) but am otherwise alive and well.

Actually, quite well.  For whatever reason(s), I have felt so much better this past week than I have for a couple years– more energy, clearer thinking, ability to stand/walk longer… still the typical POTS symptoms, but less so.

Interestingly, I have also had quite high blood pressure this week(hypertensive category, believe it or not)– I’ve never seen numbers like that from this body!  (I do take lots of midodrine to increase my BP.)  I’ve also had normal blood pressure at many points.  This is a huge difference from the bottomed-out numbers I typically see, and I am sure this explains why I am graying out less when I’ve been upright this past week.  I’ve also gained quite a few pounds compared to a few weeks ago– maybe that means I’m hanging on to the salt and fluid that could help my blood stay thicker, which is a good thing!  (Or was it just too many Christmas goodies?!?)

You may be interested to know that I have, on average, doubled the amounts of steps I’ve taken per day (around 3,000) compared to the amount I was taking during Christmas break (around 1,500).  Thanks to my handy pedometer for verifiable data!

Most significantly, many friends continue to pray for me regularly and/or daily, which is just amazing to me.  I am so thankful!

Well, that’s the quick update from my neck of the woods…. we’ll see whether other blog posts materialize as I face the perils of sitting in front of this screen.  HAPPY NEW YEAR!

And joyfully encouraged this Christmas; or, I get by with a little help from my friends

I noticed something different this year as I read the Scriptures surrounding Christ’s birth.  You know the Magnificat, Mary’s song of praise after she finds out she’s been chosen to bear the Holy One of Israel?  I tend to picture the angel Gabriel telling her of God’s plan, her submissive assent, then the Magnificat.

But, no, the Magnificat comes AFTER she goes to see her relative, Elisabeth, to share her news– and she had gone to see her “with haste.”  Think how quickly you go to someone after shocking news.  Surely, even after she submits graciously, Mary is feeling overwhelmed, thrown off, curious about how her new, unusual call will play out.  I felt encouraged this year by the friendship between the two women, how Elisabeth’s excitement about Mary’s call helps Mary burst forth in her own genuine praise and excitement.  Her song of worship focuses on God’s character and promises, and she actively trusts him.

You may be called to something hard right now, something glorious, or a combination of both.  The illness God has given me feels like a hard call, but it is one that can lead me to worship and thanksgiving.  THANK YOU to you, my friends and readers, who have encouraged me throughout 2014 and before, that I might turn my eyes upon Jesus and praise Him mightily.

May your Christmas be merry as you celebrate our Savior’s birth, as God took on flesh and dwelt among us!

postcard-5inx7in-h-front

Reluctantly meek this Christmas

We love to do Advent readings every morning in preparation for celebrating Christ’s birth.  Thanks to our friend P., who put together a book of gorgeous pictures and Scriptures to help us!

How a person with POTS puts a Christmas tree up: the kids do it.  Just joking!  My husband rocked it, but friends decorated the mantel and table, addressed Christmas cards, shopped, and wrapped for me!
How a person with POTS puts a Christmas tree up: the kids do it. Just joking! My husband rocked it, but friends decorated the mantel and table, addressed Christmas cards, shopped, and wrapped for me!

One recent morning, we read Isaiah 11 and part of verse 4 struck me:  “He shall… decide with equity for the meek of the earth.”  POTS and NCS have rendered me reluctantly meek, at least sometimes.  I can no longer freely assert my will, as I formerly (thought I) could.   I will be honest and tell you that my illness-induced meekness has been orchestrated by God and not particularly chosen by me.  Our Savior, however, CHOSE to obey and put on humility, taking on the very form of a servant, being born in the likeness of men (Philippians 2).

I admit:  I don’t really want to have someone else fill my plate at the party (yes to meatballs! no to cheeseballs!)– but when I am unable to stand that long, I must submit.  I don’t really want to be pushed in a wheelchair through TJ Maxx (yes to longer in the home section! no to knock-off hairsprays!)– but since being upright can bring on fainting, there we go.  I don’t really want to miss evening Christmas parties due to extreme fatigue— but I need to surrender to rest to have spoons (energy) for afternoon merriment (can I just pretend homework = merriment?) with the kids.

Now, I may be stretching that interpretation a little, and that may not be the traditional definition of meekness, but that verse spoke to me that God will work out His good will, and I don’t need to be worried about being left out of it.  I am missing out on some earthly fun, for sure, but He calls me to submit to Him, for my good…  and for His glory.

How a person with POTS cooks Christmas breakfast-- a stool is key!
How a person with POTS cooks Christmas breakfast– a stool is key!

Where do you long for God to decide with equity?

 

A resource for those with chronic illness and a record of blessings along the way