So, in my last post I mentioned that Whole 30 (ish) had inspired a radical change in our diet. Jon and I have both been researching why we’re feeling so good, and are pretty committed to eating a more paleo-ish diet, or as Dr. Mark Hyman described it, a “pegan” diet that takes the best of paleo and veganism and combines them. Lots of good protein, healthy fats, and veggies, with little sugar or grains.
Breakfasts pretty much always involve eggs. I learned the perfect hack for awesome scrambled eggs: crack eggs into blender, blend them until frothy, and bam, you’ve got perfect fluffy scrambled eggs. We’re also into fried eggs with sauteed greens or veggies plus a side of sugar-free bacon or some breakfast sausage. I’ve made breakfast casseroles full of veggies, and also omelets full of veggies. A particularly decadent topping for scrambled eggs? Crisped proscuitto! Sometimes we have hash browns, because we’ve been sort of using potatoes as a crutch to get away from grains, but we’d like to eat those less often, too.
Coffee-wise, we’ve discovered we love black coffee. I also made cashew milk for the first time, and have been loving it in coffee as well.
Lunches are almost always giant salads. Mine always involve arugula and maybe some romaine for crunch, or some “cruciferous crunch” mix from Trader Joe’s that has kale, shaved brussels sprouts, and radiccio. I throw in tomatoes or cucumbers or peppers, add avocado, and then some chicken breast, leftover steak, or canned salmon or tuna. Usually I put almonds or pumpkin seeds on too. Dressings are usually homemade vinaigrettes. I truly love salads with lots of vinegary dressing, and don’t really see myself getting tired of them anytime soon. This is also basically what I did for lunch before all our big changes. Leafy, crunchy, bitter, salty things are my fave. If I don’t have a salad, I warm up some leftovers.
Kid lunch note: I still pack sandwiches on Dave’s Killer Bread. Sometimes they get chicken noodle soup in thermoses. We’re not making the kids be completely grain free.
Snacks! I’ve discovered I like a simple smoothie made of frozen berries, kale, coconut milk, almond milk, flax seeds, and almond butter. Berries are super good for you, and I don’t eat them (or fruit really) very often. We’re also into beef sticks, these little fruit and nut rounds from Trader Joe’s that are either just apricots and cashews or dates/cashews/cacao. Homemade kale chips are a fave, but I will eat an entire massive bag of kale turned into kale chips in one sitting. Jon loves to snack on plain nuts. My late night love is just a giant bowl of arugula with lemon juice, olive oil, salt, and pepper, and I’m also obsessed with pickles and olives. We’ve also been going through honeycrisp apples, with or without almond or cashew butter, like whoa. Guacamole with plantain chips or gluten free tortilla chips is a forever fave.
Dinners! Here I’ll share some recipes we’ve really liked. I must say, the kiddos have really enjoyed this change and have been eating more dinner than they usually do. Very rarely I make them a side of rice or pasta to round out their meals. Below are embedded pins from Pinterest, so if you don’t see them in your RSS reader, click through.
There’s a zillion more recipes if you click through to that “What the Heck Should I Eat” pinboard. Any questions?
Back in January, I was crying in my doctor’s office. I’ve been exhausted for the past 6 years. At first, I thought it was called “having baby twins” and expected things would get better as they started sleeping better. But they’re turning 6 this month, and they’ve been sleeping great for actual years, and I was still falling-down-exhausted all of the time. This was something I felt great guilt and shame about. I took multiple-hour naps most days while getting 8-10 hours of sleep per night and I still felt exhausted all of the time. I had no energy to do anything beyond basically existing, and I felt like a lazy slob. I had also figured out by then that this wasn’t about having twins, but about the hardcore medicines I have to stay on because my heart failed that one time and we found out I have a congenital defect.
As I cried to my doctor, she wondered briefly if I had sleep apnea or thyroid problems (no and no, it turns out), but concluded that yeah, feeling the way I felt was pretty normal with the doses of medication I was on. This didn’t make me feel better, because I’m never allowed to stop taking this stuff. I am on it forever, because I like the whole “having a heartbeat thing.” When I pictured years and years of the future feeling that way, I just felt depressed and hopeless.
Jon and I like to try different diets around Lent, not always as a Lenten discipline, but because it’s a good time for us to make those sort of changes, and having a finite time period works well for us. I have, like you, a zillion friends who are rather…enthusiastic about the Whole 30 program. I have argued with them about it, even. Expressed my disinterest in ever trying it. Freaked out because I read that article about the woman who did Whole 30 and lost her ability to eat dairy, my favorite food and one of my great joys in life, no exaggeration.
I did not read the book, or anything, but I actually suggested to Jon that we try it…. for him. He has some gut/digestive issues and is lactose intolerant, and we thought maybe trying an elimination-type diet might help us figure out something to make him feel better. We decided to try it for Lent, making it more of a Whole 40. We also decided not to be super rigid about it, me especially– I didn’t want to lose my ability to eat cheese, and wasn’t super keen on giving up dairy, grains, sugar AND booze, so I decided to let myself have wine on the weekends and some cheese here and there. (Yes, I know, Whole 30 purists would love to start yelling at me about how it’s not really Whole 30, then, and frankly I do not give a flying flip.)
We’re now past the 30 day mark and I really might keep going forever. Really.
First, I would like to pause and say that I truly believe every body is different and that I think different bodies need different things and may find optimal wellness on very different eating plans. What works for me may not work for you. Maybe you feel your best as a vegan or whatever, and I totally absolutely support you in that. There is no single right way to eat for every single body and I am only sharing what works for me. Also: I am not into dieting for weight loss, and I’m not into fat-shaming or food-shaming. Eating is a great source of joy for me. I think food is a gift. “Taste and see that the Lord is Good” is literally my favorite Bible verse. Rigidity annoys me. Making something forbidden or bad always makes me want to do it more. Rules are made to be broken Moderation in all things. ETC. Just so we’re clear.
Anyway, we decided to try this thing. And at first it was annoying and we felt like we were starving all the time and wondered if we were going to make it. I may have suggested to a friend that I was contemplating holding up a McDonald’s for an Egg McMuffin (another of my great joys in life). A glass of bourbon in the evenings sounded REALLY GOOD to me most of the time. I spent one week entirely too caffeinated because I discovered that I actually really love black coffee, and it was entirely too easy to just keep topping off my cup to keep it warm without having to tweak cream and sugar ratios.
But after I stopped drinking too much coffee and feeling very Jessie Spano SO EXCITED AND SO SCARED, one day Jon pointed something out: I hadn’t been napping in many days. And I was like, “Yeah, and you know what? I feel amazing. I have the energy to do more than just exist.” I STARTED TAKING AFTERNOON WALKS. I do not wake up tired, and I also do not wake up feeling stiff or sore. When Jon suggested taking the girls to a Mexican Circus he discovered on Groupon, my first thought wasn’t “how will I find the energy to do that” but “sounds interesting and fun!”
I have so much energy now that I actually feel something like my old pre-heart-failure self. The girl who was known for being a little bit hyper, if anything. The girl who often practically bounced through life. A way I haven’t felt in 6 or 7 years, to be honest, because twin pregnancy was also mostly just a year of napping for me (makes sense, my defective heart was struggling to keep us all alive). I am also taking less anxiety medication because this all happened around the time that something got screwed up with my prescription that led to me taking a lower dose. I feel so much better than I was feeling before that I actually get choked up talking about it.
So now I’m trying to figure out what it is about all these changes have made me feel so much better. Before this experiment, we were mostly vegetarian, and our meals involved a lot of beans, vegetables, and whole grains, plus seafood, dairy, and once-a-week meat. I read Food: What the Heck Should I Eat by Dr. Mark Hyman, founder of the Cleveland Clinic’s Center for Functional Medicine, a guy who literally treats people like me who have chronic illnesses by using food as medicine. After reading the book, I definitely think that my body (my body! not necessarily yours!) needed a LOT more protein and (good) fat than I was eating before. I think drastically reducing sugar and grains, which my body thinks of as basically sugar, as well as not drinking (sugar and grains!) nearly as much as I was, have contributed to my improved energy levels.
So, now I’m going to start experimenting, keeping the main framework of the diet the same as it has been. I want to add legumes back in. I want to try eating a little brown rice, or other grains like farro, quinoa, and barley. I might gingerly add in some gluten. I’m going to keep my drinking drastically lower than it has been. I’m going to keep up on the protein and fat. And I’ll let you know how it goes!
I promise not to become a missionary for my new way of eating. This is all just about MY body, after all. But this change has been so revolutionary for me that I just had to write about it. And I might keep writing about it too.
I decided, in light of the AHCA, to research the average cost of health care for people with spina bifida. They call them “million dollar babies” for a reason. The first year, according to an article I found on PubMed, is $41,000. Every year after that is around $14,000. (The first year is the most expensive, usually, because of neurosurgery and NICU stays. I’d bet we racked up more than $41,000 in our first month of life.)
In Arkansas, we had private insurance, as well as Medicaid TEFRA, for which we paid an income-based premium and which we qualified for on the basis of Claire’s disability. It covered 100% of what our insurance didn’t. And there’s a lot that insurance doesn’t cover, but that is necessary to help kids with SB be as independent as possible, like therapies and developmental preschool. In Colorado, a supposedly more progressive state, we still have private insurance, but no Medicaid. We end up paying more out of pocket for our daughter’s care, even though we are privileged to have excellent insurance because my husband works for the university hospital.
I remember when I testified before a committee about Arkansas’ proposed 20 week abortion ban. I talked about how 20 weeks is right around the time that people usually get a fetal diagnosis that changes their very wanted pregnancy into a nightmare. One thing that people are wondering when they get that diagnosis is, can we afford to provide this child with the care she will need for the rest of her life? Will this bankrupt us? It’s a very real consideration. And I have read that 60% of people who receive a fetal diagnosis of spina bifida choose termination.
I’m pro-choice. I support safe, legal abortion care for any reason. However, I also truly believe that there are ways we can help people keep these WANTED pregnancies instead of terminating. And one of those ways is helping them afford the care their disabled kids will need for their entire lives.
The AHCA comes from the supposedly pro-life party. And yet this is a deadly bill for people with disabilities, many of whom depend on Medicaid for their life-sustaining care. This bill will make the answer to “Can we provide this child with the care she will need?” a “no.” I am confident it won’t help, and will in fact increase, that 60% termination statistic.
It also creates new worries for us as parents of a kid with spina bifida. Will she stand to have her coverage capped at some point? Will our insurer say, welp, you’re at the limit, we won’t pay any more for you, and kick her off? Will she be able to get a new policy with her pre-existing disability? Will she be able to work as an adult, or will she have to stay unemployed, lest she get too “rich” for her meager benefits? Will my husband have to stay in his job forever to ensure we keep the insurance we have now, because she might not be covered if we have to switch providers?
If you haven’t already called your senators about the AHCA, please do so. It’s a needless “screw you” to Obama that will cause pretty much everyone to pay more for less coverage, and will literally lead to people dying and pregnancies being terminated. Repealing the ACA and replacing it with this cruel bill helps no one but rich folks who will be getting a tax cut. Please call your Senators and oppose this bill. Today.
As he mentions, I’ve been trying to get my husband to write down the story of the girls’ birth and my near death for a while. I’ve written extensively about the experience and its aftermath, but my perspectives are blurred by my trauma, my sedation, and my lack of a medical degree. Here we are four years later, and both Claire and I are healthy and strong. I will always have a heart defect, and she will always have spina bifida, but it feels so good to take a moment and realize how far we’ve come from those very scary early days. Here is that story in the words of my husband Jon, pediatric ER doctor, love of my life, and amazing dad to two very lucky little girls:
I told Sarah I’d write this down over 4 years ago. To be a guest blogger.
I’m not the writer she is (obviously), but she’s not the doctor I am (thankfully).
I have told the story of how I spent one terrifying night in the hospital with all three of my girls in three different ICU’s many times. However, I was recently telling someone, and was having difficulty remembering the sequence of events, and I knew I had to write it down.
My first feeling after Etta and Claire were born was that of overwhelming joy. My first thought upon seeing Claire, was about how much worse her spinal defect was than I was expecting. Her defect had been, after all, so small that all we had seen on prenatal ultrasound was a subtle finding of her head being slightly more oblong than expected. While trying to look at her spine on ultrasound, nobody was ever able to see the defect. Therefore, we assumed it was very small. I was not prepared to see her open spine seemingly taking up her entire lower back.
She was whisked away to children’s hospital, where she was expertly taken care of, had an amazing course, and is exceeding all expectations.
The story I want to tell, though, is about Sarah.
In the first 2 exhausting days, she was learning how to breastfeed. She had lost so much blood during the C-section that she required a transfusion. She was dealing with lots of pain, both physically as she was recovering from surgery and adjusting to the huge shift of fluids and weight, and mentally, as she was separated from Claire. However, she was slowly improving and gaining a small amount of endurance, and gaining hope that we could all go visit Claire, who was recovering from her own surgery, soon.
Sarah was doing so well that they asked us if we wanted to go home. We decided to stay for one more night, to work on breastfeeding another day with Etta and the lactation consultant, and to gain a bit more strength before giving it a go on our own.
Thankfully, we stayed.
The next day, on a bright, sunny, Sunday morning, Sarah was walking the 8 feet back from the bathroom all by herself for the first time, and she started feeling short of breath. “Well, that’s OK,” I thought. “You made it! Way to push yourself!” Sarah sat and tried to catch her breath, but couldn’t, so we called the nurse. She came in with a pulse ox monitor and put it on Sarah. It read 80. I knew something was wrong.
“Take some deep breaths,” the nurse said.
“No, you go call the doctor, right now” I responded. You can’t deep breathe out of a pulse ox of 80.
The OB intern entered next. She looked at Sarah from the doorway (never got close enough to listen), and seemingly nonchalantly (although I’m sure she was terrified) said “I’ll order an EKG.”
I’m not sure what she was thinking, because I was only thinking one thing. PE. I thought Sarah had a pulmonary embolism (a blood clot in an artery to the lungs, a possible surgical complication), and needed a CT scan of her chest at minimum, if not just starting treatment for it.
During all this time (it felt like hours) Sarah was slowly getting more short of breath. I was desperately trying to remain calm and let the doctors and nurses do their job, but I also requested that the intern please call her attending.
I happened to have her attending’s cell phone number, so I also called her. She didn’t answer, and I’m sure I left the most pitiful, desperate message about the poor state of my wife’s health she’s ever heard.
Well, Sarah became more short of breath, and they called a MET call, meaning a rapid response team that included ICU nurses and respiratory therapists came to help. They applied more monitors and attempted to place an oxygen mask on Sarah. However, at this point, I could hear crackles when Sarah was breathing from the doorway, and realized she was getting worse. She was hypoxic still and likely in her oxygen hunger, she felt smothered by the oxygen mask and was pushing the respiratory therapists away. She would occasionally steal panicked looks to me with her expressive eyes saying “Help. Please. Now.”
I felt helpless, though. At some point (I can’t remember when) the nurses took Etta away from me and to the nursery. I stood there and knew what needed to happen. Sarah needed to be sedated and intubated. I didn’t know what was going on exactly, but I knew that. The respiratory therapists called the ICU residents, who came, evaluated Sarah and talked to me. They recognized me. I recognized them. They said “We need to intubate your wife, are you OK with that?” Which is crazy, because why would they ask my permission? But it was an awkward situation for them I’m sure. I said “yes, please!”
I certainly didn’t watch them sedate and intubate my wife. I pushed back the thoughts that this might be the last time I saw my wife alive. That I might be tasked with the job of caring for my two beautiful babies all on my own.
A CT got ordered, and Sarah was taken to the CT scanner, which is by the ER. I somehow met up with her dad, who is also an ER physician, and we headed to the ER to get a first look at her chest CT, fearing we would see a PE. We found a resident, who scanned through the images with us, and we saw nothing. No answer. Why then?
Sarah got moved to the ICU, and I met Mack, her nurse. I also saw a frantic intern who scrambled to examine her, attempt to get enough of the story to get some orders in and present her during rounds, which were starting. I was allowed to listen in on rounds, and was able to ask for a lactation consult—knowing that her milk was just coming in, and not wanting her to be in pain. I’m sure they had to tell the lactation consultant how to get to the ICU-they don’t go there much.
I then remember the OB attending, Sarah’s doctor, meeting me in the ICU waiting room. Saying how sorry she was to miss my call and having rushed in to see how Sarah was. So sweet. Everyone cared so much.
They asked me multiple times if Sarah was an alcoholic… because Sarah took such a high dose of sedation to keep her calm. She was calm, but quite awake. We would tell her where she was, and she would answer with her eyes and her eyebrows. Quite lucidly. She seemed to be aware.
At some point during that Sunday, she had a bedside echo performed by the first year cardiology fellow. The report was: it was a limited view, but looked OK. Still, no answer.
I took a break from her bedside and her mom stayed with her. I went to see Etta, who was in the nursery ICU, as they no longer have a regular nursery. She was in a crib all alone in a big room. I held her and sat and tried to process, but couldn’t. What was wrong with Sarah? Would she pull through?
I think it was later that night when we got word that the cardiology attending had looked at the echo and said no, it wasn’t normal. Sarah in fact had exceptionally poor function. The pieces started coming together.
I stayed with Sarah that night. When the night respiratory therapist came in to evaluate, I had seen that they had taken about 6 liters of fluid off of Sarah and she was breathing very comfortably. “What’s the plan tonight for weaning her vent support” I asked. “Oh, I guess I can work on that tonight” was the reply. She started bringing down her support to “normal” levels throughout the night.
Then, when I just snoozed at about 1am, I woke up to beeping. I found Sarah, with her eyes wide open, holding her breathing tube out to the side of her face. She had a look of shock and confusion I will never forget. She had pulled out her tube! I called the nurse to evaluate, and he put her on oxygen, but she continued to breathe easily. They reduced her sedation and she slowly became more cognizant and talkative. I was so relieved that she was back.
I can’t imagine life without her.
First photo as a family of four, 9 days later, in the NICU with Claire.
It was only 9 a.m., and I had already screamed at every single member of my family and had just broken down in tears. I could see in my husband’s eyes that things had gotten bad.
“I see the way you look at me, like you don’t like me very much right now. I don’t like me very much right now either, but I don’t know how to feel or do any different. I feel out of control all the time.”
He wrapped his arms around me as I cried and cried. And then he gently told me that while he knew I had an appointment in a week or so to talk to my doctor about my anxiety, but that he thought maybe we should talk to her about doing something NOW. I could only agree. I talked to my doctor on the phone, and after I described how I’d been feeling, she gently suggested that I start taking medication that night, so I could be on it for several days by the time my appointment came around.
As I took that first pill, I felt more hopeful than I had in a while, even though I knew it might take a while for the medication to begin to help.
The last few months have been very hard for me. I am not generally a person who yells at people or regularly breaks down crying, and it had begun to happen a lot. It was like I was walking around all the time at stress level 8, and every small setback, even things like my kids refusing to put their pants on or my inability to parallel park, would trigger explosive rage or tears as my stress level hit 10 again and again. My whole body vibrated with tension. My muscles in my head, neck, and face were so tight, my teeth hurt. And I was having to take melatonin every night just to slow my racing mind down enough to fall asleep.
I know it’s normal for people who are preparing for a big life change like a cross country move to feel tension and stress, but my feelings had become overwhelming past the point of my control. I felt awful most of the time, unable to find bright sides or hope, unable to feel anything but scared and angry and sad. Not a good way to live.
Within a few days of taking the medicine, I was sleeping much better, but still feeling very easily triggered. We have eased my dose up a little bit, and now that I’ve been on it for longer, I feel maybe 70% of my normal self? I hope to get to feeling even more back to myself as I am on the medicines longer, and my doctor says if I’m not feeling 85% or so in a month, to let her know. Already, I’m not screaming at my family constantly. I haven’t cried in days. I am so glad I had people in my life who encouraged me to get help.
And I’m sharing this with you because we don’t talk about this kind of stuff often enough. First, you feel bad because of the anxiety, and then you feel bad because who wants to admit that they keep finding themselves yelling at the people they love most, blinded by rage and fear, falling apart at every turn? But that stuff wasn’t ME. That stuff was anxiety. And for me, this anxiety was a sickness that needed medicine.
And I want to talk about this so that anyone out there reading who is feeling awful most of the time, who is feeling panicky and fearful and rageful and wired, knows that it’s not just you. You don’t have to keep feeling terrible all the time. You don’t have to be ashamed to ask for help. And you deserve to feel better.
I hate April Fool’s Day on the internet. Some pranks can be funny, but mostly they just make me feel frustrated and annoyed. Plus, I always feel kind of Debbie Downer-ish on April 1st. Four years ago, on a bright, shiny, April 1st morning, I almost died.
On Easter morning, my pastor mentioned in his sermon that he had never had a near death experience. That he had never felt outside his own body while teams of healthcare professionals worked to save him. He went on to talk about how he had felt life-less, though, had experienced darkness, despair, depression, and how this life-less-ness is something we all can relate to, a reason we all need to experience the Life Abundant that Jesus offers. I appreciated that message.
But as I sat there, I must admit that I missed a lot of the sermon, because I have had that near-death experience. I have felt suddenly all too aware of my body’s own frailty. As my heart failed and my lungs filled with fluid, my body became a prison. As respiratory therapists, nurses, and doctors fought to save me, I felt helpless and panicked and irrational. I pushed masks meant to help me breathe away because they felt suffocating. I fought the people trying to save me as I fought for my life. And in the middle of it all, I remember thinking, they’re going to have to sedate me, or this is never going to work. Flashes of lucidity in the middle of sheer panic and terror. I remembered all of that on Sunday morning, and so I distracted myself grinning at a small boy in front of me wearing a seersucker suit instead of going there in my mind.
This is actually a picture taken during the girls’ delivery, not of me when I was intubated.
It’s a weird thing to be a person in the world after something like that. Around the first year anniversary mark, I was having panic attacks and intense anxiety, because I’d been so busy keeping twins alive, I never really got a chance to process what happened to me until a year later. Now, four years later, I mostly forget about that time I almost died. I can tell the story in such a way that it makes people laugh, even. Or I can shock even healthcare professionals as I tell it in as vivid a way as possible. Somehow the process of turning an experience into an anecdote has placed some distance between me and the intensity of the feelings I have about that trauma.
Also, though I take pills every day to keep my heart from every doing THAT again, I mostly don’t think about it too much. But sometimes I’m reminded unexpectedly, or something brings it up– someone asks if I’m going to have any more kids, for example–and then I remember that time I almost died. I’m usually sorry I have to mention it, like I need to spare the other person from the news of my trauma. I worry about becoming That Girl Who Won’t Stop Bringing Up That Time She Almost Died. Do people want to avoid me in case it comes up? I can’t imagine it’s really what anyone wants to hear about over cocktails. I’m even wary of writing too much about it for fear this blog becomes That Downer from that Girl Who Almost Died Once and Can’t Seem to Get Over It.
But I can’t avoid this day. It’s a marker of time for me. I was a different person before April 1, 2012, and I’ve been a different person ever since. Sometimes I think my experience made me fearless, because nothing short of death itself can ever be as scary as that day was. Other times I think it made me feel more fragile, a little too aware that it could all be over in a blink, more than a little afraid that it will be. On this anniversary, I’m not much of a person who can take a joke. I feel a little bit raw and a little bit fragile, though I am also pretty sure each year will lessen those feelings as I put more distance between myself and the trauma of that day. I hope so.
So, a funny thing happened over the last month: I became a person who doesn’t just occasionally climb mountains, but one who *gasp* actually works out regularly. Yeah, I don’t know who I am, either.
Somewhere between my kids becoming 3 year olds who don’t wear me out quite as much, becoming a heart health ambassador, and just wanting my pants to fit a little looser, I decided I had the time, energy, and desire to do something fitness-wise. I’ve always been a healthy eater, but my main source of exercise has been chasing, lifting, and caring for my kids. It turns out when you turn 30, that’s not enough to keep your weight steady, if you’re me. I love my mombod, but knew both my heart and my waistline needed a change. The problem was, I generally hate exercise. I like hiking, but that’s not very fun in an Arkansas summer. I like yoga, but that’s not generally cardio. I will never never never be a runner, because I straight up hate it and have flunked out of the Couch to 5k program twice. But then I remembered I don’t hate dancing, so maybe I could give that a try. Dancing has the added bonus of being something I can do in my air conditioned living room while my kids sleep, or even with my kids, and it’s good cardio.
My workout partners.
I ordered a set of Zumba DVDs from Zulily but the shipping was going to take a while, so I started looking for workouts on YouTube to try in the meantime. I’ve managed to find a decent mix, and shockingly, have managed to work out for about 20 minutes almost every weekday for the last month. I don’t actually hate this! In fact, I am feeling more energetic, drinking slightly less coffee (slightly), and am actually starting to feel like my clothes fit a little bit better. It’s not some dramatic story about jumping around in my living room and suddenly dropping 3 sizes, but that’s not what I wanted, anyway. I just want to take better care of myself, my heart, and my body.
I feel I should note that I feel like the world’s flailingest white girl while pelvic thrusting and shimmying in the privacy of my own home. I would DIE if even my husband saw me doing it, though I’m fine with the bufflogals joining in from time to time. But it doesn’t matter that I probably look ridiculous– I can be Beyonce in my mind. If I need inspiration to go ahead and “jiggle it,” this video is ample motivation:
I thought I’d share some of my favorite YouTube dance workouts in case any of you would like to flail around your living rooms in the name of fitness, too. Here’s to having at least a little fun in the name of getting healthier.
Do any of you do at-home workouts via YouTube? Got any faves to share?
Sometimes I can’t resist a cheeky post title. The truth is, I climbed a mountain in Yellowstone, and I never would have thought I could. Not three years ago, when I almost died, but really not even before that, when my heart was weak and had a congenital defect I didn’t even know about, in all the years before I almost died, when I thought I was just a wimp with no endurance.
But when I found out I’d get to go with my husband to a medical conference in the Tetons, I knew I wanted to try to push my limits. I’ve been in “normal cardiac function” range for the last two years, and I’ve been feeling stronger than my old wimpy self. How could I go to some of the most majestic wilderness in the world and not hike? And then, when I started researching hikes and saw that National Geographic had named a 7.2 mile “moderate” hike to the top of Mount Washburn as THE most legendary day hike in Yellowstone, I got a little crazy and decided we had to try it. I mean, they said it was “a day hike that carries the hiker directly into the park’s essence, where its iconic beauty and mystery are on vivid display,” and “this classic hike, a must-do that many do over and over as a virtual pilgrimage, is really about the views.” Who could resist that pitch, even with a bum heart?
I have to be honest, I really didn’t think I would make it up to the top. I figured I would try really hard, but thought I’d get really tired at some point and have to turn back. I warned my husband ahead of time that I wasn’t sure I could reach the top, and he said he was more than willing to just give it a shot.
The hike started out STEEP. It helped that it was through a beautiful meadow, so I had something pretty to look at. My refrain was basically “just keep swimming, just keep swimming.” I found a doable pace and stuck with it.
About 1/3 into the hike, I felt a twinge of pain in my hand and looked down to see my hands were getting REALLY swollen. Swelling is something I am supposed to watch for, so it concerned me a little. Lucky for me, my ER doctor husband is experienced in getting stuck rings off of people, so he helped me get my wedding rings off. He thought maybe the swelling was more to do with the way I was swinging my hands as I walked, plus the altitude, so I started wearing our daypack so I could hold onto the straps and keep my hands elevated. Soon the swelling was getting better.
We got closer and closer to the top, and I was getting shocked by how GOOD I felt. I mean, I felt like I was on the world’s most beautiful stairmaster with ankle weights on, but I wasn’t struggling to breathe, and my heart rate was a reasonable 110ish. Was I really going to do this? Climb the tallest mountain I’d ever attempted on the longest hike I’d ever done?
Yes, yes I was. We got to the top where it was windy and chilly. 10,243 feet isn’t something to sneeze at. I sat down in the fire tower at the top feeling shaky, slightly spent, and utterly thrilled. It wasn’t Everest, but to me, it was something like it– something I hadn’t thought I could do, but tried anyway and TOTALLY DID. I’m so glad I got to do this hike with Jon, because he has been on this journey with me all along, and he was just as proud as I was. He signed our names in the guest book and added “congenital heart defect and all!”
Things got slightly more interesting when we got SUPER close to a herd of mountain goats on our climb back down. We quickly realized we were between some adults and some babies and backed off and gave them space. Eventually they got off our path, but later, when we recounted the story to someone back at our lodge, he said he had heard of someone who was gored by a mountain goat and DIED. The idea that it would gore us hadn’t even crossed our minds. We thought at worst they’d head-butt us off the trail!
It was interesting to compare this hike with one we did together when we were dating, before I knew I had a heart defect. I struggled to hike to Hanging Lake, which was half as long as this climb. It’s strange to believe that I’m stronger now, having experienced serious heart failure, than I was before, when I didn’t know I had a heart defect, but it’s true. The medicines I’ve been on for the last three years have allowed my heart to get better, and at my last cardiology appointment, my doctor said, “your heart is STRONG.”
According to Wikipedia, author Elbert Hubbard who climbed Mount Washburn in 1914, wrote, “From the tip top of Mount Washburn you can see the world in much of its glory. It is an entrancing view. You are in love with living. You want to do more of if. You plan to do big things when you get down into the work again.” He’s right. I was in love with living, and so grateful that I get to do more of it. And now I have a new goal, a plan to do big things: I want to climb a “fourteener” some day.
If you’ve been reading for awhile, you’re familiar with the fact that I very nearly died after having my babies and later found out I had a previously undiagnosed heart defect, left ventricle non-compaction syndrome. Further genetic testing revealed that my heart defect was due to a genetic mutation, which led to genetic testing for both Etta and Claire, too. I really really hoped neither one got it, but there was a 50/50 chance they did.
It turns out those odds were exactly right. Etta has the mutation, Claire doesn’t. The good news is, both girls have already had echocardiograms, and we know they don’t have my specific heart defect. But, the mutation can also cause other forms of heart failure, so she will need lots of monitoring to make sure her heart is staying healthy. We see the geneticists later this week, and then we will be referred to cardiology. That’s all we know for now.
All my life, people have looked at my long legs and asked me if I’m a runner. While I have an uncle who’s an ultramarathoner, I have never, ever liked running or really exercise of any sort. For most of my life, I thought this was because I’m just wimpy, lazy somehow. I could never complete the entire President’s Physical Fitness Test mile without a large bit of walking. Pretty much all physical activities left me easily tired and winded, so I never really played sports or learned coordination or balance. I can’t really stand on one foot. I am MASSIVELY clumsy.
Three years ago, I learned the real story behind my fainting Victorian lady’s constitution: I have a heart defect. Exercise has always left me winded and fatigued because my heart was already working as heard as it possibly could just keeping me alive. Asking it to go above and beyond was just not gonna fly. Finally, just the stress of keeping me and two other people alive sent my heart into actual failure.
Now my heart is able to function in a normal range because I take some pretty serious medications. But I still feel weird when I exercise (or visit a high altitude locale) because my medicines keep my heart rate very controlled– for most folks the goal of exercise is to get your heart rate up, but mine’s not really going to go up, no matter what I do. Even when I stood on a stage and talked about the scariest thing that ever happened to me, I worked up a good sweat but my heart didn’t beat a bit faster. Instead, when my heart rate should be climbing, I feel like I always have: easily winded and overtired.
Still, I know that if I want my heart to be healthy in the future, I’m going to have to figure out how to exercise. I don’t want to, because I, shockingly, don’t like doing things I suck at. I don’t enjoy being the flailing person at a gym. I project all sorts of thoughts into other people’s heads about how insane I look and how pathetic I am getting winded just barely jogging. Not to mention, finding time to exercise when you have twin toddlers is tough.
For the vast majority of people, competitionin exercise is not fun. It’s no fun to compete if you know you can never win. It’s no fun to be on a team if you know you’re bound to let everyone else down with your performance. The rhetoric of ‘more, better, harder, feel the burn’ doesn’t work for who those of us just want to use our bodies and enjoy being in them.
I remember really liking yoga for a while there. I think that’s something I might be able to achieve via videos during a couple nap times per week, but I can’t give up all my nap times, because those are also usually my writing times. I also don’t mind walking, and think maybe I could make that happen a couple of times per week too. I’m not likely to take up running or anything else hardcore, but I can move more so that I can take care of my heart and feel more connected to my body, to enjoy being in it.
In the meantime, if you see me struggling up a hill in the neighborhood know that my heart is trying really hard to be in it.
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