Do you have a rich uncle?

cattleonhills

Suffering is costly. Perhaps your lost job has led to an empty bank account and maxed out credit cards. Maybe relationship difficulties brought on court costs and attorney fees… and that child support check never seems to come. Or maybe you are faithfully attending counseling sessions without knowing how to pay for them. You might have a special-needs child who needs expensive therapy.

Being sick with POTS & NCS, for me, has led to giving up work I loved (editing a literary journal and teaching art, along with the tiny but helpful paychecks that accompanied those nonprofit jobs). It requires hundreds of dollars of medicines each month, as well as other extra expenses. And perhaps more devastatingly to you coupon divas out there, my newly limited mobility means I can no longer scout out the best deals to stretch our dollars quite as far as I once could.

I CAN park quite close to stores, thanks to my trusty new handicapped tag. I CAN do cool 360s on electric scooters, thanks to my recently developed scooter-driving skills. I can even tell you which stores have the fastest scooters (shout-out to Publix; thumbs down to my beloved Trader Joe’s).

However, a short jaunt soon leads to drops in blood pressure, bouts of nausea, and a ghostly-white or putrid green face, depending on how my body reacts, not to mention exhaustion that sends me to the couch as soon as I am home. Hence, my days of comparison shopping have decreased.

I was feeling a bit discouraged about the costliness, for my family, of POTS and NCS. I prayed, after having to pay too-high prices at the store I could visit that day, that God would provide for us, that He would make our finances work.

Turns out, He does own the cattle on a thousand hills.

And I have a rich uncle. Or do I? (You never know if that long-lost uncle might be out there somewhere, right?)

That very afternoon, I opened a letter (Yes, I walked all the way to the mailbox. Snaps for Kristi!). I unfolded the note, and out fell two $100 bills. (Have you ever even seen a $100 bill? I had not. Turns out, they have a very snazzy anti-counterfeit strip.)

God provided.  The very same day of my worries.  Abundantly and (to me) surprisingly.  O, me of little faith.  God will not abandon me or you.  He can provide in surprising ways, tangible or not.

Has God ever provided for you in a surprising way?

I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on….  Are you not of more value than [the birds God provides for]? And which of you by being anxious can add a single hour to his span of life? Therefore do not be anxious, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’… Our heavenly Father knows that you need them all. But seek first the kingdom of God and his righteousness, and all these things will be added to you….    Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble. (from Mt. 26)

 

 

 

 

Talk about tachycardia (POTS Symptom #3)

A hallmark symptom of POTS, or postural orthostatic tachycardia syndrome, is tachycardia, or rapid heart beat.  POTS is often defined as a syndrome in which a change in position from lying down to standing up causes one’s heart to rise more than 30 beats per minute.

A sample day of my heart rate before treatment
A sample day of my heart rate before treatment; no wonder I dread showers

As I understand it, with POTS, my brain does realize blood isn’t being distributed throughout the body as it should, so it tells my heart to beat extra fast to try to get the blood to go where it should.

These crazy fast heartbeats sure make one tired!  Let’s say your tachycardia is in the 140s for a good part of the day.  That heart rate is comparable to that of someone running, biking, or doing stairs… a good part of the day.  No wonder fatigue is an issue for the person with POTS!  For me, chest pressure may accompany tachycardia, and I can often literally hear my heart beating or feel it pulsing in odd parts of my body.

The “P” of POTS stands for “postural,” and indeed, posture changes greatly affect heart rate for POTSies.  My heart rate is best when I lie down, but if I even lift my head from the pillow to grab a cough drop, my heart races like crazy.  Sitting and standing make it even worse.

Thanks to my trusty beta blocker, my heart rate is now mostly under control.  That doesn’t necessarily mean blood is going where it should, but it has made the biggest difference in my condition, as far as treatment goes.  Rather than collapsing at the top of a flight of stairs, gasping for breath, I can slowly make my way up.  Making PB&J for the kids no longer feels like a strenuous workout.  (NOTE: Beta blockers are NOT appropriate or helpful for everyone.)

What activities set off your tachycardia?

 

My neighbor, Nausea (POTS Symptom #2)

Today, I would like you to meet my neighbor, Nausea. (Why? See here.) For me, Nausea is a lot like that neighbor kid who knocks on your door at all hours, peeks in your windows, and before you know it, is at your house for hours on end, any day of the week. Let’s be honest: Nausea is a bit of a Dennis the Menace, wreaking havoc on your plans and causing no end of consternation.

dennis

I think you know what nausea feels like; for me, the range of nausea runs from feeling unpleasantly nauseous to being so nauseous that I have a lot of pressure along my throat and feel like the lunch (or lack thereof) I had earlier could make its re-appearance at any moment (yeah, sorry you had to read that). Many people with dysautonomia are unable to keep down food or liquids. Although I am sometimes unable to eat or drink and tend to eat little most of the day, my food typically stays down, unlike during months of pregnancy that included vomiting six times a day (pronounced perfectly normal by my OB… really?!?).  (Before my POTS/NCS was treated, the nausea was even more intense.  Due to lack of eating, I lost weight but tried to eat high-cal, nutrient-dense foods like avocadoes, nut butters, etc, when possible.)

What causes nausea for me? Well, you know how those unpredictable neighbor kids are so good at sneaking into your house? Nausea is great at coming over with most any excuse. For me, many things that involve sustained focus (playing board games with the kids, helping with crafts or homework, food prep, computer time, chatting too long) or movement (cleaning, attempting seated exercise, riding a scooter or wheelchair, standing long) are sure to trigger it. I also am suspicious of some foods. Nausea also loves to join me most days for no obvious reason at all.

What can one do? I can’t speak to nausea in general, but what helps me a bit may help other dysautonomiacs, although I am not qualified for real medical advice. Typical anti-nausea meds haven’t made a huge difference for me. My doctor at the Vanderbilt Autonomic Dysfunction Center said that was because nausea comes from my vagus nerve not communicating properly, which is what dysautonomia is all about, and the meds aren’t geared for that.

So, I can try to keep nausea at a minimum by avoiding some activities or taking breaks during them. I try to eat small amounts at a slow pace. If I am at home, I might drink ginger tea or peppermint tea if I can swallow. I think avoiding certain foods may help, and if I am out, I love to have Altoids and these Trader Joe’s Gingermints on hand (even taking deep breaths of that deep Altoid minty smell can help). Really, though, I just have to know that like that uninvited neighbor kid, Nausea will eventually head out, at least for a while.

If you have dysautonomia, what helps your nausea?

Ella enjoyed Altoids and Gingermints after spinning herself dizzy.
Ella enjoyed Altoids and Gingermints after spinning herself dizzy.

Love leads to love

Today is a beautiful, sunny day. It’s Friday. It’s summer. The kids are home, and a friend just came to see me. My husband even has the day off. It’s a very good day.

Unfortunately, it’s also a not-feeling-good day. My heart rate keeps dipping into the 40s, and my eyes look weak. My head is searing with pain, down through my neck and shoulders; nausea is rearing its ugly head.

But on this very good, not-feeling-good day, I have something special ahead. My friend L, who knows about sickness from experience, had my family on her heart. She and her husband are coming to have dinner and play in the backyard with our kids so my husband and I can go out, have a change of scenery, focus on the very good, and try to ignore the not-feeling-good for a while.

Her love leads to love as her service enables me and my husband to grow closer together.

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Presyncope, according to Suzanne

Thanks to Suzanne, an Even Rocks Cry Out reader who shares her family’s stories of presyncope below:

“I had fainting episodes, and actually did pass out after a pasta and bread meal while working in a shoe store. Horrible, yet informative to my family because the testing that followed was inconclusive as to why this happened. I needed to change my eating habits, which were very healthy, and eat more protein. I had no idea I was gluten intolerant, but thanks to my children I made that discovery later in life.

“Flash forward to my children, ages 14 and almost 12. My son was about 10 1/2 when it hit him. He was diagnosed with RH after near faint episodes at age 11, finally. He went off gluten and casein protein (cow’s milk). After such, plus increasing his sodium and water volume, he improved and the issues of near fainting stopped. He grew about 3-4 inches that summer! That was his trigger, the rapid growth spurt, but we never did test for anything else because he improved so fast…just like that.

“My daughter was not as ‘lucky’ to skirt by this as fast. She had multiple episodes of scary tachycardia, brain fog and numbness and she also does not perspire…ever! Instead, her body over heats and she feels nausea and dizzy. It happened the worst one day when she was singing in church. This ‘episode’ led to multiple doctor visits, a hospital stay, and four days of testing. [After many dead ends and several doctors,] POTS was the diagnosis. … Her eating was bothersome to her system until she completed a round (bottle) of 20 Billion probiotic. What a difference. … The precursors to the ‘episodes’ were a pale complexion, red cheeks, hot to the touch face and arms, blood pooling in her legs (lace-like appearance), numb and heavy legs and dizziness which would progress. It’s been since November that my daughter has been home with me, on home teaching, because what school would know what to do in this case? I also discovered that some types of salt make her MORE dizzy.

“Today, as I type this, she still has good days and bad. This is a learning area for our family. My own journey was not as rough, but it gave me some tools to later help my children. It’s horrible to think that my genes gave me two beautiful children with this battle inside of them just waiting to be triggered. I tell my daughter I’m sorry, and that her life is not over, she is just hitting the pause button sometimes, and that is ok. I thank God everyday it’s not worse. We share our story and try to help others. It’s our journey and our mission right now.”

Presyncope, according to Lisa

Thanks to Lisa, an Even Rocks Cry Out reader who submitted her version of presyncope:

“For me presyncope means having the otter edge of my vision go black. Talking is really difficult. I almost always instantly feel like I’m going to have diarrhea or vomit. In seconds I’m drenched with sweat. My hearing goes funny and I get really disorientated.

“If there is one ‘good’ thing about presyncope is that it gives me time to sit/lie down before I totally faint. The first time I tried to ‘power through’ the presyncope symptoms, I ended up waking up on my bathroom floor. Now I know that if I’m experiencing pre-syncope, I need to sit down NOW, wherever I am.”

Check out Lisa’s POTS blog.

Presyncope in action, according to Kristi

I recently posted an explanation of presyncope as a person with POTS/NCS. Here’s an example of when it recently happened for me and how I felt.

My family and I were at our church’s summer block party one evening not long ago. I was a good girl and used the wheelchair, because I knew going between a parking lot, gym, and fields would be too much walking.

After catching up with friends and watching our kids play outdoor games, we went into the gym for dinner. I was sitting in line talking to a friend when I felt presyncope coming on. She asked me if I was okay (my face started to go pale), and I assured her I was (trying to live in denial and hope it would blow over). A couple minutes later, she asked if she could get me anything (paler face, less responsive chatting on my part). She brought me a glass of ice water, which I immediately held to my temples, hoping it would help me feel better. In the next couple minutes, I went from pale to paler to zombie-white, stopped being able to respond to her, couldn’t tell anyone what I should do (I need to memorize the words, “I NEED TO LIE DOWN!”), and generally went from bad to worse (for more description, see my explanation of presyncope). My eyes were watering, my chest and neck were a blotchy bright red, and friends pushed me and my wheelchair out of the gym, as shocked-looking friends and strangers looked on, and my husband went to get the car so I could lie down with the A/C on full blast.

Okay, I don’t like presyncope, but I REALLY don’t like public presyncope. I feel like I seem like a dramatic diva who can’t just keep it together. I feel very embarrassed and even a little ashamed. My three elementary-school-aged kids get very worried (zombie + Mommy is not a good combo), and in the moment, I lack the conversational skills to reassure them. I managed to eke out, “Go ask Daddy” to anything they said. When my 11-year-old asked how I was, I gave him a thumbs-up to reassure him, which he later told me was very upsetting, since he could tell I was not doing well and thought I was tricking him.

On top of that, if anyone offers me sympathy, I lose it. One friend said, “I hate that you have to go through this,” which caused me to burst into tears. Being the recipient of pity has never been easy for me.

But even as I was going downhill, I was not alone. Friends gathered my little guys to have dinner with them. Friends brought me a hot dog and chips so I could load up on salt. My husband’s cell phone buzzed like crazy as friends texted him to see what they could do. Friends pretended not to notice when I rejoined the party, much later, with a red nose and puffy eyes. Friends prayed for me in the midst of it all. My Best Friend assured me, “I am your refuge and strength, a very present help in trouble.”

How do you feel when presyncope hits? Have you had embarrassing public moments due to something your body did?

A powerful Name

Yesterday, I was at a different church hundreds of miles from home, worshipping with my family. We’d just sung “How Sweet the Name of Jesus Sounds,” and I was sitting there wondering whether Jesus’ name really does “soothe [my] sorrows, heal [my] wounds, and drive away [my] fear”; if I can attest that “it makes the wounded spirit whole and calms the troubled breast.” Do I really run to Him first with my sorrows and fears and let Him speak into them?

Interrupting my thoughts, the pastor called us all to participate in the passing of the peace. He knew we might not be familiar with that centuries-old tradition and told us “all we had to do was stand, extend a hand, say, ‘The peace of God be with you,’ or give the reply, ‘And also with you.'” I moved from overanalyzing to being grouchy as I bemoaned the fact that standing is rarely easy for me, with POTS & NCS.

Then something extraordinary happened. As I sat there sulking, I heard my name. Surprised anyone at this church could know me, I turned around… and burst into tears.

Happy tears. Amazed tears. Grateful tears.

Standing there smiling at me was one of my dearest friends in the world, S, who lives nearly a thousand miles away from the church we both “happened” to be attending that hot, humid morning, unbeknownst to each other.

There, in front of me, was the one I met freshman year at college and roomed with for the next three– we’ve been through moves to six cities; grad schools, job changes, job losses; more than 25 years of marriage and five kids between us; the ups and downs of life and faith we could share at any time.

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I don’t need to wonder whether the name of Jesus is powerful; God is alive and well. He is active in my life, breaking through my self-focused reveries to remind me that His work doesn’t depend on how good I am at calling on His name– HE calls ME, and I can respond in gratitude. He orchestrated this seemingly impossible meeting; great is the Lord.

One day, after this brief life is over, when I hear “Kristi,” I will turn around and see Him face-to-face, and I think I may burst into tears then too.

Happy tears– that I will have finished the race and be unified with Him forever. Amazed tears– that He will say to me, “Well done, my good and faithful servant,” because of His work in and through me. Grateful tears– that He made me His child through Jesus.

The name of Jesus IS sweet and strong. There’s power in that Name, friend; call out to Jesus with me.

At your service

Years ago, a friend sent me a nice e-mail after she and her kids spent a morning with us in our home:

“Kristi, I always love coming over, because it feels so relaxed. Your home has that nice, messy, lived-in feel that just takes the pressure off and makes me feel better about my own house.”

Thanks? And this was after I’d cleaned up (or thought I had). Really, I just had to laugh. (And I’ll admit, I’m not the neatest person ever. See exhibit A, below.)

My desk in its untouched state
My desk in its untouched state

Another friend recently shared with me that she’s not a big blog reader because she starts comparing herself to others and her heart goes places it shouldn’t. Turns out, though, my blog doesn’t have that effect on her.

Okay, that just cracked me up. So here I am, in all my relaxed, messy, weak state for your reading pleasure.

Hey, my pastor says God uses the weak, the foolish, and the broken to show His strength and glory, so… game on! Who’s with me?

Our daily bread (or bagels)

bagel

My friend P and her daughter took me and the kids to the mall recently to help the lady with the wheelchair (that’s me). I love ordering almost all our clothes online (so great for those with limited mobility or shop-a-phobia!), but once in a while, you’ve just gotta go to the real store.

We decided to enjoy a treat before our strenuous expedition–I think one store at a mall counts as strenous, and we were planning on two. Yes, TWO!–so we stopped in Panera.

The kids were drooling over the variety of baked goods, and I was just whispering to them that they couldn’t get cream cheese, so we could save a few cents on their bagels, when the customer in front of me turned around and handed me the change from her transaction. It wasn’t pennies, folks; it was bills, enough for my son to order the coveted cream cheese for his cinnamon crunch bagel.

What in the world? Who was this lady? She basically handed it to us without a word.

God was providing us our daily bread. Literally. Wow.

And there was just enough money leftover so we can pass the rest on to a stranger another day.

Has this ever happened to you?

Do you have shop-a-phobia or are you a mall rat?