I’m on a liquid and cracker diet
An honest update for the last newsletter of EDS & HSD Awareness Month
Morning darklings,
I thought we’d end EDS & HSD Awareness Month with the fraught tug of war that is my relationship to food. Next week, I’m talking about live storytelling and magic, so we can run towards June with open hearts. But closing out May with this essay just feels right.
I’m not anorexic. I’m not bulimic. I don’t fast or gorge or tinker with diets. I love food. I have been happily engaging in an addiction to sugar and exploring the culinary world since I realized that toppings other than cheese are delicious.
My first taste memory is everything before age 12 rolled into one. I’m unable to separate them. There was spaghetti and spaghetti ice. There were apples and peaches, turkey and ham, casseroles and pastas, boxed and homemade.
Laughter is associated with food, celebrations with crowns and presents. A warm sun above me with roller skates underneath me as I furiously lick down a Bugs Bunny ice cream. Family dinners with chicken and breakfasts with popping cereal or Chocolate Biscuits. There were pot lucks (what seemed like weekly) where jello and tuna salad sat dying beside the nearly empty dishes of Chocolate Lush or sausage balls. I didn’t think about food, I just ate it.
A memory of eating chicken cordon bleu still comes with a groan and the taste of bland Panko. I grew to loathe even the image on the freezer box. It was fine at best, but my parents can cook. (And I do mean cook. My dad has often considered opening a restaurant.) I remember wondering why they didn’t make things everyday, but opted to present breaded chicken stuffed with ham and Swiss cheese on a plate with some steamed broccoli.
It didn’t occur to me that they were exhausted.
As I began making my own food regularly, I defaulted to the creamy goodness of Stouffer’s mac ‘n cheese. Did I know how to make macaroni and cheese from scratch? Absolutely. But why would I when it takes two minutes in the microwave and theirs is so much saucier than I could get mine?
Oh how quickly one begins to understand their parents when they are the ones doing the work.
Flash forward to me moving out. I headed to my first place with a fully stocked kitchen. I could be a chef, I could cook all the time, but did I? No, I didn’t. I bought frozen meals and pizza with questionable meat stuffs on it.
It wasn’t until the allergies hit in earnest that I started really looking at the contents of my food. I didn’t have a choice, really. My stomach started to distend. It grew so round, I looked months into a pregnancy. Some refer to this as “basket ball tummy”. That would sublux my ribs. The pain and swelling took turns vying for my attention.
I knew that Velveeta was a “pasteurized prepared cheese product”, and that most colored foods were off my list because they started giving me migraines when I was barely a budding teen. It took years to figure out that chemical dyes and smells were no longer going to be a part of my life. Even then I wondered what does yellow 5 dye add to things?
But I had many more questions when I began to itch and splotch and swell. I didn’t know what guar gum was or that some food companies didn’t regulate if their product was made with sunflower or soybean oil, they allowed it to be location and availability based. To think I just accepted a company not knowing what oil is in which bag, not knowing their own ingredients. I won’t even let someone look at my bag in the airport because I was to know everything that’s in there at all time. Doesn’t matter if the TSA already gave me the okay. That’s just me, maybe.
When I began to figure out some of the things (read: not just foods) causing me to have issue, it was clear what I had: MCAS (mast cell activation syndrome). Well, at the time it was a disorder. I didn’t get an email to let me know it changed categorizations, in case you were wondering. The internet corrected me as I was grabbing an article for someone.
I didn’t even need to see a doctor to get a diagnosis, though I still saw many.
MCAS is a histamine intolerance. I go in to detail about the syndrome and that part of my journey on RootedInRights, the WA disability blog if you’re interested.
Most of my favorite foods were snatched out from under me.
When I was a teen, I lost Butterfingers and Doritos. The Butterfingers were the biggest loss there. I missed the sticky substance that seemed to cling to the hollows of my teeth.
In my twenties, I lost tomatoes and mushrooms and liquor, vinegars and rice and seafood. I would leap towards death by internal fire ants if I risked a nibble of my favorite food, my birthday meal since I was allowed to choose, my first love and lust, spaghetti. The list is longer than that by a mile, mind you, but the strangest item was leftovers. If the cooked food didn’t go into the freezer quickly after it was made, I couldn’t eat it.
I was diagnosed with GERD (gastroesophageal reflux disease) along with my MCAS. I got on an over-the-counter medication cocktail. Still, I needed help.
So I went on my first diet: an elimination diet, of which I don’t recommend. It’s like telling your body you’d like to experience shock and become weak. It will oblige, I imagine you don’t want to suddenly drop below 90 pounds, though.
I didn’t talk about this much with people. Mostly, I suffered in silence. If I wasn’t losing weight so rapidly, no one would have known at all. I ate the doughnuts and treats from the bakery for a while. I think I wanted to avoid the conversations as often as possible. I’d just leave when the symptoms got bad and give some excuse of being tired or busy. Neither were a lie, but I just couldn’t tell the full truth.
It seemed like I was doomed to spend a good portion of my life sick on and off due to something I loved so much. The definition of a toxic relationship.
I eventually nailed down some foods I could eat, found some healthy fats to eat regularly. I gained weight back. I struck a balance—one that had me eating what I called “reset soup” of broth and chicken and white beans once a week, not eating much the next day, then I could go back to my approved food list.
At any moment I’d find another thing I was allergic or intolerant to. Baking soda and baking powder being in one dish was a no-no, but one or the other could be tolerated in small bites. It had real comedy sketch energy. Uh-oh, I have another allergy, Steve. I’m allergic to walking past seafood restaurants. ::laugh here::
Only, a watering eye from walking down the street isn’t all that amusing.
It was a tenuous time, but I managed for a few years.
I’d go out to eat and have unapproved foods. There were repercussions, but I did okay. I was able to make my way back to baseline. I’d cook new recipes—tailored to my specific and complicated diet—with my dad on Sundays. Sometimes I would pay for that, but it was worth it. I knew how to sort it all out.
That was until summer of last year.
August 17th was a lovely day. I met my friend for lunch. I had chicken, eggs, and sour cream—all approved. I even checked on what oil they used first. I was feeling great, the conversation was sparkling, the wind was soft and cool against my hot skin.
My friend left, and I walked across the street for a cookie. I thought I’d sit, enjoy it, and head home in a bright and shiny mood. Everything but this one cookie had corn starch. I hedged. I thought that it didn’t make sense. But it was a flat cookie, things could be different. It’s a place known for being open and sensitive to vegans and allergy-ridden people alike. So I risked it. It was really good. By the time I drove home, I was ill. I knew it was corn starch, because only corn feels like that for me.
We had grapes and cheese in the fridge. When I was hungry, I ate some and didn’t get worse. Anything else I tried for a few weeks did—even my “reset soup”. Though barely more than a summer snack that can keep you mildly hydrated in between gallons of water, black grapes became what I ate whenever I was feeling bad, to pull me from the hole.
By November, I found a rhythm. I could cook on Sundays and even eat a small helping, then have grapes and cheese on Monday and Tuesday. Wednesday, I could eat frozen Sunday food. But Thursday to Saturday, I had to prep for Sunday, so I often went back to grapes and cheese.
I adjusted to this. It wasn’t perfect. To be honest, it was all pretty horrible. Sundays were what made this work for me. I could do it as long as I had Sundays.
During one of my particularly bad weeks, I was just on grapes. Even cheese was iffy. I canceled Sunday again and spent my days eating fruit. The worst happened that Thursday: I got sick from grapes. Or at least I thought it was the grapes.
This time, sick was vomiting. Sick was crying and begging for my body to stop because there was nothing left in me.
After many chats and a lot of research, I found out that I’m one of the lucky adults who has abdominal migraines. With no sarcasm at all, I say that I am honesty lucky that I’ve only had a few (unlike my regular migraines).
Something that night triggered an abdominal migraine in the midst of my usual issues. It was the blow torch to a gnarled forest coated in gasoline. Of course I didn’t know that at the time. I only knew that I needed to watch reruns of Buffy in between trying to eat and the vomiting. I knew it would be different because I couldn’t stop heaving. I asked to go to the ER.
That night was hell. It was long and grueling and ended with me eating crackers the hubs bought from a store because the ones they were offering at the hospital had junk I couldn’t eat. We’d tried the crackers on our anniversary trip only two weeks before. They are just flour and olive oil and salt. I cannot thank our AirB&B hostess enough for essentially saving my life. She doesn’t know it, but I’m eternally grateful.
I kept two crackers down, so they sent me home. It was a mistake.
The next two weeks were boxes and boxes of crackers, blocks and blocks of cheese, and a few attempts of other food in small nibbles that caused distention, nausea, pain, cramping. I made appointments. So. Many. Appointments.
One would help, I told myself. My GP would help.
I’ve seen the same GP for years. She’s guided me through so much, but she offered me nothing aside from referrals. She shamed me, blamed me, brushed me aside. Thinking about the appointment makes my blood run hot even now, despite writing this as I get my weekly infusion and my veins fill with cold saline.
Her nurse laughed at my weight of 95. Her nurse laughed that I couldn’t eat. She told me my body looked normal, that crackers and cheese were okay because “at least I was getting carbs”.
I imagined my organ failure with every bite of the carbs that were supposedly enough to keep me alive. I cried at the fact that 95 from 98 in a matter of months was laugh-worthy. My new GI’s earliest appointment was 5 months away. How much could happen to your body in 5 months without nutrients?
Last month, I ate a few bites of food here and there. The consequences were painful. There was another ER visit—that one this most horrible I’ve yet to have. More appointments were made. I got a lot of empty words, wobbly legs, and lost pounds worth of muscle mass.
I spoke with nurse after nurse in the infusion center and through my insurance. I read through PubMed articles to understand more about my body and my options. I learned words like dysmotility and TPN. Though I wanted to ditch my GP, I emailed her for new referrals. She claimed I was not eligible for much of anything. I’d already spoken with my insurance, and they were shocked I wasn’t already getting help already. Though the company was worried about the cost of a woman in the hospital, the nurse I spoke to was worried about a human being wasting away.
Finally, after begging and calling and crying and worrying, I got an appointment with a nutritionist. A cruel twist of fate: she was in the same clinic and, in fact, communicated with my GP. She started the appointment saying they discussed my case before I came in.
Seeing her there with the start of a smug speech, crossed legs, a closed posture threw me against the wall. I was trapped. She had me on the ropes before I knew I was in the ring.
Advocating for myself is something I’ve grown accustomed to doing, so I cut her off. I was shaking as I told her about the carbs comment, about the laughter, about comments that showed my doctor wasn’t listening and prescribed medication I’m allergic to. A nutritionist shouldn’t let those things slide, and she didn’t. A look of horror, a true expression of shock. She didn’t agree with an MD. The rest of the visit was tears and knowledge and help, though not how I wanted it.
She gave me information, offered me advice, talked to me about my options. I left her office with words and thoughts and Big Feelings.
I had to go to the grocery store on the way home. I needed more crackers. The nutritionist called me as we pulled into the parking lot. She suggested a drastic game plan. It made sense, but I didn’t like it, didn’t want it, was fucking scared. I lobbed back a thought, a musing, if you will. Though she was skeptical it would work, she supported me trying it.
That brings us to today, now.
I’m on a liquid and cracker diet. It was the suggestion I made to the nutritionist, the compromise I needed to try.
Beyond my crackers and cheese, I’m trying to sneak in bananas and peanut butter for snacks. But one meal a day, I fill with real food pulverized in my new Vitamix (a gift from my parents which cost more than my TV). I drank a chicken breast and a waffle—not in the same blendie. That’s what I call them—that or gazpachos. Better than liquified eggs and yogurt or even just an entire dinner turned into the consistency of melted ice cream.
The thing is, I’m on the clock. If I keep up progress, am able to go from a few ounces to a full-sized shake sooner than later, I may see myself through the end of this.
If not, I’ll end up with that drastic solution both the nutritionist and my GP (if you can believe it) agreed was best: a j-tube.
For those of you unfamiliar, a j-tube is a feeding tube that bypasses your esophagus and stomach, going straight into your small intestine. This would avoid my GERD, the gut dysmotility due to my hEDS, my abdominal migraines, my MCAS. It just gets my nutrients to me and works on healing my gut biome. That sounds amazing, right?
Might be if it wasn’t a surgical procedure where they put a plastic tube in my body so I can be fed. That’s harrowing for an hEDS body. I can still swallow, so I am giving the less invasive option an honest go first. It’s painful sometimes and unnoticeable the others. There are times I “overeat” as I try to stave off the low-grade hunger I’ve been living with for months now. But I’ll do many things to avoid a surgery. I’m not scared of going under the knife, I’m scared of what will happen after I wake up.
So I’m drinking my food, I’m doing somatic tracking, I’m visiting gardens and drinking tea. I’m trying to heal my body and bring peace to my mind in case the sensors of fear and previous allergies are causing any current harm. I’m trying to manage and find a new balance that involves anything but having a 13th surgery, so few of which have been successful.
Many times throughout this piece I wanted to apologize. I wanted to tell you that I’m sorry I’m not talking about where I’m at in my creativity or how I’m healing and doing better, that I’m not sending you a story about a woman being chased by a serial killer or a pixie who collects hands. Many times I thought you deserved an apology because you didn’t sign up to hear about my food journey. Then I remind myself that a) I’m an apologist and have a long way to go and b) it’s okay to talk about the dark things in all avenues of life.
I am sharing something I keep to myself or talk about in terms like “I’m allergic to like 90-95% of foods”. I laugh and shrug. I eat at home. So instead of apologizing, I’d like to thank you for being here with me during one of the toughest times in my life.
I found myself writing fiction in the middle of writing this piece. I was drawn to it in a way I haven’t been in ages. I set this down and moved to a new document where a story began to take shape. It’s not the first new story I’ve played with recently, but it does feel the stickiest.
Though my memory for words like remote as I reach towards it has diminished and my ability to spell remember fails now and again, though I write so when I mean to write seem and burst into tears for no apparent reason, though my speech comes out strange, my creativity remains. As long as I have that, I can probably get through anything.
In the audio version, I added this:
Throughout this newsletter there are photos of rainbows and cats and a harrowing image (if you would like to call that) of the cracker boxes that I ate just lined up on the ground, just so you can see the gravity of what I mean when I say, “I have only been eating crackers.” Sometimes it’s hard to image, fully put it into words, so I figured an image was better. I thought about sharing a picture of something like my collar bone or my distended stomach, but I didn’t want to, but that didn’t feel right—for me or for you. You might not want to see that, and I don’t want to share that. I want my body to go back to normal and not think about it, not have photographic proof of what it was at its worst. But a picture of cracker containers really shows everything it needs to show.
I’m currently existing.
I think I’ve filled you in enough today.
Now, it’s your turn. How are you existing this week?
Until next time, harness the Little darknesses and embrace the Little things.
Thank you for sharing this. I had no idea people suffered from this kind of food allergy. Your fighting spirit is inspiring.
Although it seems crazy, several of us are dealing with these same issues in our home. The food allergies. the stomach migraines, the diets you don’t want to be on because you’re allergic to Everything. Even the hyper mobile joints and dislocating body is something going on here.
The one thing that healed a lot of my insane level food allergies was Reiki. I was fasting and living on juice for two months when I started learning Reiki and started noticing less reaction to foods.
I gradually, very gradually added back things to my diet but felt worlds better and stronger and started emotionally healing from all the trauma.
Reiki allows Gods light to come in and heal. Spiritually, physically, emotionally, it blessed my life.
My kids are still dealing with EDS, possibly POTS and all the above and my husband with dementia and total disability and yet, I’m feeling inspired this week that we’re finally getting genetic testing in place and hopefully an actual acknowledgment that there are problems going on and we’re all just not crazy.
I can’t tell you how many times we’ve been brushed off by medical professionals but your story is absolutely relatable and infuriating all at once. My heart started racing as I read and relived so many of these similar situations.
You’re not alone. I’m so glad you’re writing and sharing and spreading awareness. Maybe someday I’ll see you again at a Writers Conference. I left Oregon in search of better medical support and have found a lot more options in Utah. There are still ignorant doctors and dead ends but there’s also the doctor that saved my husband’s life.
Keep writing! Love your stuff
-Shelly