Category Archives: Resources for the Body

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?

yoga1

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.)

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!

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!

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!

I’m all about that salt, ’bout that salt; no pepper

So, why am I constantly mentioning salty drinks and salt fixes?  Believe it or not, simply INCREASING SALT (and fluid) INTAKE is one of the first lines of treatment for most people with POTS and certain other types of dysautonomia.  Although most Americans have heard we should decrease our sodium, salt is fantastic for most people with POTS, because it thickens our blood and increases our blood volume so it has a better chance of “sticking” in our brains and the upper half of our body instead of pooling in our legs and feet.  Often people with POTS have less blood volume than normal people, for some reason– so think of how you feel when you’ve given a pint or more of blood (lightheaded, nauseous, weak, maybe fluish):  That may be how a person with POTS feels a lot of the time.

Believe it or not, if I am fading or having a hard time talking and drink a big glass of salty water, it helps significantly.  I’m so thankful!

My kind of Christmas cheer
My kind of Christmas cheer

So how does one get all this sodium?  (Don’t take my advice, but doctors often recommend 5,000-8,000 mg of sodium a day for people with POTS.)  Of course, you get some sodium in your diet.  For about a week last summer, I counted sodium milligrams the way people count calories and discovered I need to add about 2-1/2 tsp of salt per day to my diet, particularly because I don’t eat a lot of processed foods (which often have a lot of sodium).  That’s a lotta salt, folks!

At first, I tried sprinkling salt on everything I ate.  However, I didn’t love the taste, plus at times, I can’t eat a ton due to nausea and digestive issues, so I didn’t really want to ruin the food I was trying to enjoy.

I started putting 1/4 tsp salt in hot tea (acquired taste for sure!) and have worked my way up to 1/2 tsp of salt in pretty much whatever I drink (tea, water, steamed almondmilk, etc)– and I can handle a full teaspoon in electrolyte-type drinks, like Gatorade (which I don’t like due to sugar and color), or even in sodas (ditto) or smoothies.

Foods thought of as salty, like chips, may be high in sodium… but I once calculated I’d have to have about 20 servings of chips PER DAY to get the sodium I need (149 mg in a serving of regular potato chips is just a drop in the bucket for me!).

If you are adding salt to your food (or drinks!), consider sea salt for the trace minerals it has.  If you use straight Morton’s, you may inadvertently intake too much iodine.

OPTIONS FOR INCREASING SODIUM:

  • Sodium chloride tablets:  My doctor at Vanderbilt’s Autonomic Dysfunction Center prescribed these for me, or you can order them online.  I was taking 1,000 mg tablets, which were very handy, but the impact of that much salt on my stomach often led to trouble….
  • Nuun tablets, Thermotabs, etc: These can be added to water and give you a good kick of sodium.  I like to keep Emergen-C packets in my purse, because they can easily be added to water with an extra tsp of salt and still be drinkable.
  • Salty foods:  Some POTSies eat pickles, then drink the juice, and I’ll definitely slurp up some olive juice with the olives I love.  Deli meats, prepackaged frozen meals, cans of soup, etc, are all full of sodium.  Just be sure to count milligrams!
  • Salty drinks:  Drinks with electrolytes like Gatorade or coconut water have some sodium and can handle more salt.  I often drink tomato juice mid-morning and chicken broth mid-afternoon.
  • Sole  (pronounced so-lay): This is a highly concentrated salt solution made with Himalayan sea salt.  It claims to cure many, many ailments and is recommended to be drunk each morning 30 minutes before you eat.  I’ve been making and drinking this for a couple months, and I don’t notice a huge difference compared to what I’d been doing, but then again, I was already taking in a lot of salt.

You know I like pretty things.  Just last week, a friend gave me this adorable bag specfically for holding the salt packets that were in an old metal tin in my purse.  What a great gift (and very useful)!

My own personal salt lick
My own personal salt lick

Do you like salty foods or do you have more of a sweet tooth?

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.

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

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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:

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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?

Lots of lightheadedness (POTS Symptom #5); also, how I was diagnosed with POTS

For me, lightheadedness was a big clue that something was possibly quite wrong with my body.  In the fall of 2012, I started getting lightheaded anytime I stood still: waiting in line at Walgreens, chatting with friends in the kitchen, tucking my kids in bed, singing a hymn at church, scanning shelves of books at the library, looking at clothes at a store.  (Hence, the stool!)  I also got very lightheaded any time I lifted my arms (putting on mascara, grabbing something from a high cabinet, hugging my husband’s neck).  A low moment came when I was waiting in line at Goodwill with my then-4- and 6-year-olds and slumped to a puddle on the filthy floor to avoid passing out.  When asked if I was okay, my then-4-yr-old Ella put her hand on her hips and sassily told everyone, “It’s just a headache.”  Um, not exactly.  (More about that in a future post: Horrendous headaches were my first big clue something was wrong.)

Lightheadedness feels like I’m woozy; the world is a bit fuzzy; my body is unsteady; I need to sit or lie down!

I started telling my doctors about this, and off we went on a version of “If You Give a Mouse a Cookie.”

If your physical therapist sees how lightheaded you are during exercises, especially when you raise your hands above your head, he will refuse to treat you anymore and send you to your primary care physician.

If your primary care physician has you sit up straight and breathe in and out as he listens to your chest, you will almost pass out, and he will send you to your neurologist.

If you see your neurologist, he will suggest that you are highly anxious and prescribe Xanax.  You know people with mental illnesses sometimes don’t realize they are unwell, so you think, “Hmm… maybe I’m highly anxious and just don’t realize it.”  Turns out, you’re not, and Xanax doesn’t help.  Repeat to yourself: POTS IS NOT ALL IN MY HEAD.

If you go to your orthopedist and tell him how raising your hands makes you lightheaded, he will have you demonstrate to compare the left side vs. the right side.  When you almost pass out after keeping your right arm in the air for a few minutes (though seated), he will get very excited about this phenomenon.  He will send you to a leading vascular surgeon.

If you go to the vascular surgeon, he will also get excited by how lightheaded you get, how your heart races, and how your blood pressure drops.  He will want to devise a test for you so he can study what’s happening.  A couple weeks later, he calls to tell you you are beyond his scope, and he will make an appointment with a cardiologist.

If you go to a cardiologist to tell him about your dizzy spells, he will correct you and tell you to use the word “LIGHTHEADED.”  Dizziness is more like the world is spinning around, which is not really how you feel.  That was helpful. He will also say (when asked if you could have signs of POTS) that he would NOT treat POTS, because he is a CARDIOLOGIST.  Oooooo-kay!  (Many people with POTS are treated by cardiologists.)

If you get extremely discouraged and try a brilliant new internist, she will send you to an electrophysiologist.  You will tell both of them all your symptoms, which you’ve been reluctant to share in case they think you’re crazy.  (Repeat to yourself:  POTS IS NOT ALL IN MY HEAD!) They will have you do a tilt table test, and after 12 minutes of standing upright, you will pass out.  Your body’s mixed response will have them decide to send you to Vanderbilt University’s Autonomic Dysfunction Center.  And boom, now we know!  Lightheadedness DID mean something was wrong, and I have POTS and neurocardiogenic syncope (mixed dysautonomia).  Turns out, my brain is not telling my body how to work properly to get enough blood to my brain, hence, lightheadedness!

You are thankful that lightheadedness, a key symptom of POTS, is often relieved by lying down.  Although you are now maxed out on meds and have improved, you still get lightheaded every day while upright (though less so) and are glad you’ve learned to manage by sitting a lot, using a wheelchair, and having your trusty stool.

Have you ever gotten the runaround for a medical issue?

No wonder I'm lightheaded when I tuck the boys in... 6 feet in the air!  Thanks for putting the kids to bed most nights, Mark!
No wonder I’m lightheaded when I tuck the boys in… 6 feet in the air! Thanks for putting the kids to bed almost every single night, Mark!

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.)

IMG_6124

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!)

tracksteps

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!