Yes, my life and that of my four daughters (and two sons, of course) is blessed and amazing, and glamorous at times. I try to keep things real here and try and show some of the work that goes into it all. I’m not one to back away from washing floors on hands and knees and cleaning all the toilets in the house in one or two pomodoro time blocks. If there’s work to be done, count me in.
We’ve been easing our way into a new way of eating.
I’ll never forgot that November 2018 day when my daughter was rushed to the ER by ambulance twice, on three separate fall downs. She was falling down: falling down at work, falling down off her chair at the dinner table, falling down in grocery stores, falling down everywhere.
It was and still is scary, challenging, and can be frustrating. What she has is not life-threatening, or cancer, and for that we are eternally grateful. At this time, it is life limiting, and while that Dubai post looked all glamourous, she wore compression garments the entire time. And yes, she had a fall down in the fancy resort hotel. On doctor’s orders I’ve been cooking gluten and dairy free. I’ve asked her many times to guest post on this blog here, her writing is exquisite, and funny, and usually very deep. She finally said yes, and here’s her first every day dress entry:
So, I’m “second daughter.” You’ve probably picked up on some of my story from following my mom. Don’t worry, she asks permission before she shares anything personal about me. However, she does NOT ask permission for some of the God awful, no make-up, greasy hair pictures she posts of me. We’ve had words about that.
My health struggles started about sixteen months ago. I’ve had mental health issues (depression and anxiety, the dream team) since I was eighteen, but in November 2018, I got really physically sick. I was having seizure-like episodes two or three times every day, and I was too weak to get off the couch.
I have a lot of respect for medical professionals (shout out my best friend, Gabrielle, RN), but I felt like doctors weren’t listening to me or taking me seriously. They basically wanted to write me scripts and send me on my way. They told me all of these symptoms were a result of my anxiety. Yeah, I know anxiety can cause a lot of physical symptoms, but I called bullshit. You always know when something isn’t right in your own body.
So, I kept looking for a solid diagnosis and real treatment plan besides the 1 million pills I swallow daily to raise my blood pressure, prevent seizures, help with my anxiety, aid my sleep, and ease my depression. At 27, I take multiple pills three times a day. My favorite round is the nighttime one that I can wash down with a sip (gulp) of wine. No, I have not stopped drinking wine, and I know that’s probably pretty fucking dumb but let me have this one thing, please.
I went to appointment after appointment, getting blood drawn and having pictures taken of my heart and brain, talking to nurses, doctors, and therapists. I just kept insisting something wasn’t right. My therapist and the persistent research I was doing on my own eventually lead me to a webpage about PoTS (Postural orthostatic Tachycardia Syndrome – try to say that every time somebody asks what’s wrong with you) and my symptoms lined up perfectly with the chronic condition.
I found a doctor who specializes in PoTS, and in the beginning of February 2020, he diagnosed me with the illness and some other fun bonus conditions: Dysautonomia, orthostatic dizziness, anemia, primary insomnia, chronic fatigue, and something called Ehlers-Danios Syndrome (which I will admit I don’t understand). It was hard to swallow, but I finally felt like I could start working on acceptance now that I had real answers.
I learned PoTS patients are 5:1, women to men, and most often under 35 years old. They can go undiagnosed for years. For me, I was beyond grateful to have health insurance and access to many doctors, but it was still 16 months before I even heard of the illness. If anyone you know experiences severe fatigue, lightheadedness, brain fog, a high heart rate, low blood pressure, headaches, nausea and vomiting, excessive sweating, or fainting, I suggest doing a little research on PoTS. It’s actually fairly common, but some doctors know very little about it.
Yes, I experience one or all of those symptoms on a daily basis. My favorite is the excessive sweating. So sexy.
Anyway, my new doctor ended up tripling my blood pressure meds and adding a few more prescriptions, but he also gave me some natural ways to help alleviate my symptoms. There’s no cure right now, but there are ways to work toward becoming less disabled.
One key element is increasing salt and water intake. I’m constantly chugging water (with oral hydration solution powders that taste like chalk) and need to take in about 10,000mg of salt a day. That’s what I would call a fuck ton. I dip beef jerky INTO SALT sometimes when I need a quick dose or take a shot of straight pickle juice. So nasty.
Exercise is also a big part of recovery, and what the fuck, because the condition makes it almost impossible to walk upstairs sometimes (not kidding, I’ve crawled before). I have to start with a program that only allows supine exercise because my heart isn’t strong enough to handle much else right now. It will get better in time, but I plan on using this this excuse forever to NEVER do a burpee again.
Here’s the hottest part of the treatment: I have to wear full compression clothing up past my belly button, every day. Sorry boys, I will be undressing in the bathroom from now on, and you will no longer be part of this process. Hahaha. Sorry mom. (She doesn’t actually care).
Ok, so medication, hydration, exercise, compression, and here we go: DIET. Oh my God, when the doctor told me I need to start eating all Organic, Gluten-Free, and Dairy-Free, I started crying for the fifth time in the appointment. He explained that my body shouldn’t be spending extra energy to digest foods with gluten or dairy. That night I went home and ordered a greasy fried chicken sandwich covered in cheese, drank rosé, and mourned. I am excellent at throwing myself pity parties.
After finally starting to recover from a severe eating disorder of seven plus years and an over-exercising obsession, I started freaking about restricting food and tracking my exercise again. I just don’t know how to do it without going down the rabbit hole. I called my mom, and she said I would need a whole support team. I’m so lucky that team assembled. All my friends, family members, and doctors have jumped on board to help me cope.
Gabrielle, best friend 1 (hi Lexi, best friend 2, in NO particular order), in solidarity, decided to cut most gluten and dairy out of her nutrition plan too. She wants to see how she feels, and now I have somebody to text to complain how fucking gross vegan cheese is. We rate “food alternatives” and work together to find a good vegan butter brand, debate what to put on cauliflower “pizza,” and admit how many glasses of wine we’re having that night.
Oldest sister, currently pregnant, has had to tone down her exercise intensity a little. Since it’s dangerous for my heart rate to go above a certain BPM, she showed me some apps she uses (she loves the Tone It Up app) for lighter workouts that I can do sitting down. She’s the gentle encouragement I need to get in some movement and the reminder to not over-do it.
Mom has also been amazing. She’s making it so much easier to find things I can eat, and actually making them taste good. She’s cooking with more vegetables, skipping the cheese, using olive oil instead of butter, and experimenting with plant-based recipes. Now, I’m not going full vegan and gluten-free. I mean, a girl with anemia needs a good ribeye sometimes, for the iron of course. I’ll probably also sneak in a cheeseburger every now and then, because I can’t imagine never having one again or I will have a full-on meltdown.
Ok, I have to admit something. I have always thought people who eat like this are annoying. I roll my eyes pretty often when I scroll Instagram and see someone’s like, totally healthy vegan dinner. I think part of me gets a little jealous though. I mean, not that their food looks that good, but they can stick to something that I didn’t think I could (and am still not sure I can). It’s been important for me to realize resentment comes from thinking that I can’t do something somebody else makes look easy.
It’s only been 16 days since I’ve started this new “nutrition plan” and it is NOT easy. I dream about food every night. Cupcakes, pasta, chocolate chip cookies, pizza, ugh. Sometimes I’m hungry an hour after eating a pretty full meal. I mope at restaurants when I can’t eat the bread on the table. I have been daydreaming about eating real butter with a spoon. I get annoyed with myself for being the girl who asks for the gluten-free crackers at the wine bar. Wine is GFDF by the way, thank God, otherwise I probably wouldn’t survive.
In just over two weeks, it’s not like I’ve dropped six pounds or stopped having any symptoms, but my therapist did tell me I look healthy, and that felt amazing to hear. I don’t know if I feel any physically different yet, how I may feel in two months, or if I can even keep this up another day.
Trying to stick to a new habit can be a pain in the ass (not to mention, eating this way is expensive as fuck). But for over a year, I’ve been desperate to find anything that may help me start getting my normal life back. I’ve decided to listen to this doctor, because he listened to me.
I know there’s all this debate about what kind of food or diet is even good for you (tomatoes? Have we figured this out yet?) but committing to one thing that might make me better gives me hope. It makes me want to get healthier in other ways too.
It is still hard, sometimes almost unbearable, for me to get out of bed. I always feel sick in a way that’s hard to explain. I’m tired all the time. I can sleep for hours and hours. But my mom has taught me the importance of making small and gentle changes and forming good habits that will inspire more (sorry, mom, I still don’t make my bed every single day). I’ll be doing my best to get up every day (as much as I can physically tolerate), have some protein for breakfast (GFDF, as much as I can physically tolerate), and put on my sexy compression clothes. Every Day Dress, in Spanx.
by Sarah Collins
Rebecca I’m. Praying for your daughter Sarah to get well & feel better ! I’m
Thank you Tracy. Much love to you and your family. xoxo
Beautifully written & heart wrenching. Hugs & prayers to you Sarah. You have an amazing support team! One day at a time. ❤️
Strong women raise strong daughters. I tell my daughter “keep your feet planted and head held up high” things will work out.
Your mom was right. You have a gift for writing. Thank you for sharing your story. Your health journey, which isn’t over, is one of interest to anyone who has suffered with undiagnosed maladies. With the grit and determination that you have shown, there is hope. Hope that today will be a better day. Hope that tomorrow will be better. Hope that EVERY tomorrow will be better. Don’t underestimate the power of food to heal. Keep reading and researching and expanding your knowledge. There is no one better to be an advocate for yourself than YOU. You are very fortunate to have parents and family that love you so dearly and are there to support you in the journey back to perfect health. I have no doubt you will get there and as you have acknowledged, it won’t be easy. But what victory ever felt worth it unless there was intense effort put in along the way?
I love reading your mom’s blog, especially about food and family….two loves of mine! I hope you will continue to be a guest blogger as I think you have a lot to say….and you say it well.