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.
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 can stand up for 10 minutes anyway? (Oh, wait, my husband says most people can.)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!
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?
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)
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:
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 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)?
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!
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.
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!
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 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!
A resource for those with chronic illness and a record of blessings along the way
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