Gluten, Gluten Everywhere, but Not a Crumb to Eat

GF
ID: A lot of gluten-free products that my wonderful cousin Michele gifted us to help us on our gluten-free journey

Whew. I’ve been writing a book for the last two years now (off and on between everything that has happened to us and the world between August of 2016 and today). A large chunk of the writing is about what it has been like parenting with chronic illnesses. As I looked back on blog posts and diary entries and photo albums I have been reckoning with the idea that my youngest had inherited pretty severe anxiety from me. I wasn’t sure if it was the messaging he got when I was undiagnosed and very sick (that the world can be scary and unpredictable), or a unique set of genes that seem to have skipped my oldest. I blamed myself, often, for passing this on to him. I had stalled out on a chapter called “Inheritance” because I needed to make peace with my internalized ableism, with the idea that having my children become like me might be a curse. I have passed Lyme down to my oldest, but so far his immune system is keeping it in check. Lyme is awful, and I wouldn’t wish it on anyone much less my children who didn’t ask to be born. The harder part, though, is seeing some personality traits that had plagued and tortured me much of my life live on in them.

Especially with my youngest. I recognized the same reactions to failure that I had, the same reluctance to try something new or to try something new publicly. The same pressure to make creative endeavors perfect. I have a lot of blog posts about these moments with him. I have worked with myself so much to make sure I am not passing down an environment soaked in perfectionism. I’ve tried so hard practicing being kind to myself. I’ve tried to model taking chances that just ten years ago would have been completely unthinkable because it would have involved too much risk. But, just as with my illnesses, a purely cognitive, positive-messaging, psychological approach made only a small amount of difference. That difference was important, and necessary, and has made our family life a lot happier, but it didn’t change the underlying anxiety that was humming throughout our days.

Even though I gave up dairy six years ago based on a food diary and accompanying horrible symptoms, I never felt I had a problem with gluten. I swore up and down that the few times I gave up gluten felt worse that ingesting it. Until I got treatment for Lyme. And we tested my oldest for Lyme. And tested out an elimination diet for all of us this summer. Turns out a huge amount of my immovable fatigue was related to eating gluten. And my inability to regulate body temperature. And my neck and shoulder pain. But it was so obscured by all of the other horrible symptoms I was experiencing that I didn’t recognize it.

Turns out that the current of disabling anxiety electrifying my youngest’s brain starts when gluten in his system flips the switch. I don’t want to tell all the details right now, because it is hard to think about how often he must have felt so awful. Suffice it to say, when he eats gluten he becomes inconsolable. All those years of trying to comfort him through his worst times with a hug and the right words and not having them work became clear. There is only so much a hug can help when your brain feels like it is on fire. And until he had days without his brain being on fire he thought this was an inevitable part of who he was. He would tell me he hated himself. He can feel the difference now. He doesn’t hate himself any more. He does still hate how he feels when he is off, but he can separate that feeling from who he intrinsically is.

One morning recently he had cereal that was not officially gluten-free; it was made in a factory that also produces wheat cereals. Within fifteen minutes his eyes became glassy and he started to tell me his joints hurt and he didn’t want to go to school and just hugged me tighter and tighter. I had him take enzymes that can help break down gluten in case of accidental ingestion. Within another ten minutes his emotions righted themselves. It was scary and telling. There is no doubt in my mind that gluten has been hurting him for years.

This may also be inherited. It could be Celiac disease, an autoimmune disorder that can run in families with other autoimmune disorders like Hashimoto’s or Rheumatoid Arthritis. I could take a 23 and Me test to see if I carry genetic mutations for Celiac. As I go gluten-free some of my autoimmune conditions seem to be reversing, so it is possible that it isn’t just a sensitivity but a trigger for my body to keep damaging itself. My youngest has had lots of disparate and seemingly unrelated symptoms that also make sense in the context of Celiac, although he never had classic symptoms. I never had classic symptoms. If it hadn’t been for this experiment I may have never known. And as an Italian-American foodie, I might never have given up my carb-heavy lifestyle without this push. And my youngest inherited those sensibilities from me. He wants to have a cannoli food truck when he grows up. We’ve ordered some gluten-free cannoli shells online.

One article I read said that a child’s system may repair itself 3-6 months after adopting a gluten-free diet. All I know is that after about six weeks of a gluten-free diet my child’s sense of self-esteem and self-worth has improved a ton and a weight that was on my heart has been removed. He talks about his ideas so much more. Homework isn’t the same struggle, neither are chores or new hobbies.

My chapter called “Inheritance” isn’t stalled so much now as it is complicated by every new twist and turn, but somehow I don’t feel the same guilt as I once did. Quite possibly because my youngest isn’t suffering the same way he once was. Quite possibly because I’m not suffering the way I once was. The random nature of how the universe assigns predispositions and chance encounters in diverse environments and how that all comes together to create your life – I cannot take the blame for the whole universe. I can’t take blame for possibly being an asymptomatic Celiac sufferer born to family with a great-lasagna-making Italian grandmother. I can’t take the blame for not knowing I was bitten by a Lyme-carrying tick when I was six.

But I can take credit for every time now I try to make my youngest his favorite foods without gluten, and how I’ll tell him that this isn’t my most polished or logical essay, but I got writing done today and I am proud of myself for that, and all those years of hugs that didn’t solve him feeling horrible but at least let him know that we were there.

Summer Is Almost Over ?!?

 

Hostas
Image Description: a large amount of hosta plants with purple flowers on stalks

Holy crow it’s almost over, isn’t it?

What happened???

Every summer I vow that this summer will be more structured and balanced. I won’t forget to exercise. I will take all recommended supplements. We will go to the farmer’s market every Friday (so far we are one for eight on that). New hobbies will become habit. Writing will happen. But life doesn’t like it when I try to wrangle it into an organized march. Every week has been a different rhythm what with camps and vacation and lessons. So it goes with blog posts, too. I did not intend to write one today but noticed it had been a long while so here we are.

Here is some summer stuff that I haven’t gotten to properly process/reminisce about/think through and will run out of summer time before it happens:

  • I have nearly 200 pages of my book written. That is bananas. I still have about 20,000 more words to go. Even more bananas
  • The boys have done a chess camp and a stop-motion animation camp, swim lessons and have an archaeology-ish camp coming up next week.
  • We had my mom’s side of the family reunion in Kentucky and I got to be 100% myself for a full week because I was around A) people who know and love me in all my overly enthusiastic goofiness and B) locals who I may never see again. No masking required.
  • I survived a NASCAR race and a day a Six Flags in a heatwave.
  • I need to up my Lyme treatment again because while my heart rate was great on vacation, the stress of real life means my body isn’t coping as well as I’d like. I don’t really want to up my supplements because it means I lose some of my day.
  • We’ve taken the boys off of dyes and preservatives with good results. We’ve taken me off of gluten with the result that I feel a bunch better, but I complain a lot more about what I can’t have.
  • Our new house has so many flowering plants that I didn’t realize. Every week something new is exploding and while I’ve tried to keep track I am finding it impossible.
  •  The outside of the house renovations are FINALLY DONE!!! Thank goodness.
  • We saw Incredibles 2.
  • We just went to an outdoor concert where the band Classical Blast played The Cranberries’s Zombie as a symphony would, and I just about died from 90’s nostalgia happiness.
  • We have plans to make some pineapple sage lemonade this weekend.
  • I have an adorable Modcloth dress that I need to wear out somewhere, but we haven’t had a chance to go out.
  • We don’t know, still, which school the boys will attend in the fall. We might not know until the week before school. That is not helping my (or the kids’) anxiety levels.
  • I got to hear Len’s Steal My Sunshine.
  • I realized that I have a lot of symptoms of both Autism and ADHD that overlap-and that ADHD strategies are helping me figure out how to make my life work.

 

There is a ton I could unpack about any of these-really! I can think of a mini-essay for all of these, but alas time is fleeting and I need to go make lunch, add 500 words to a chapter about How to Train Your Dragon and disability rep, get some groceries, remember to put our bin of batteries by the door so I remember to take them to recycling, learn how to write a book proposal, submit a story, learn about how people with ADHD have very little concept of how much time tasks take, sew a pillow with Christopher, try not to obsess over how young I looked on the day of the 2016 election and how I’ve aged ten years in the last 18 months…the usual.

Just checking in, hopefully I can get something more coherent to you soon!

Kristin

 

Red Hen

 

shallow focus photography of white hen
Photo by imagesthai.com on Pexels.com

A friend of a friend (I found out this last week) is the co-owner of the Red Hen in Lexington, Virginia. I am incredibly proud of what she did, how she interrupted the narrative that says we have to be docile in the face of those who want us to die by neglect or malice, who want our voices to be silenced by stripping our names from voter registers and keeping us quiet and “civil”-all while lying to our faces about what is happening.

The owner who asked Sarah Huckabee Sanders to leave did so respectfully, privately, and with as much care to all parties as one can when confronting the lying mouthpiece of a horrific administration without losing site that she is also human.

Sanders could have let the incident go, but instead decided to make an example of the Red Hen, that how dare anyone, no matter how thoughtfully and carefully, interrupt the the comfort and entitlement of the people in power. She, by announcing what happened, sicced her followers on the Red Hen, sicced the President on the Red Hen. They have had death threats and chicken manure dumped on their doorstep. Anti LBGTQ bigots camped out in front of the place.

My question is, if this administration really had all the power why would one person refusing one member of the administration a meal (in a way that let her maintain dignity as she left) require the full force of the President’s platform? They were trying to make an example of the Red Hen, to show the rest of us that we better not speak up. Instead the Red Hen is an example to us-that disrupting them works. Disrupt, irritate, slow down what they are doing, be a thorn in their side, a rash that makes it uncomfortable to sit wherever they please.

The stakes are very high right now, I am I so dismayed by rank and file Democratic senators who are chastising the Red Hen (and Representative Maxine Waters) for disrupting the system. There is a quote by Zora Neale Hurston I am reminded of, “If you are silent about your pain, they’ll kill you and say you enjoyed it.”

We are at that stage. 5000 people died preventable deaths in Puerto Rico. We have children in internment camps.They have tried to gut healthcare and providing food to poor children while starting trade wars and stripping environmental protections. We left the UN’s Human Rights Council for God’s Sake.

I have included a link to the Red Hen. (Click on the name) If you are so inclined, you can buy gift certificates and ask that they not be sent, that the money just be put back into the business to help them get back on their feet and to show support for how they stood up for what was right.

Thank you.

 

 

Essay at Rooted in Rights

 

Garden Lites
Image Description: A box of Garden Lites Chocolate Muffins that are dairy-free and gluten-free

 

Hi Everyone!

I have a sort of unusual essay/article out today at Rooted in Rights, a disability advocacy group. It is called As a Chronically Ill Mom, Even Tater Tots Are a Way to Show My Kids Love . It’s about being a mom, food being love, preservatives, the Standard American Diet and convenience foods, and it’s part of the conversation around Mother’s Day about what it means to be a disabled mama. I hit a lot of topics in 1000 words!

Hope you are all having a great Mother’s Day weekend!

Love,

Kristin

 

Keratin

My nails have been breaking. I don’t know if they got weaker while I was going through the most intense parts of my treatment for Lyme disease. Both index fingernails broke. My thumbnail has started to show signs of distress, jagged lines where it looks like the layers of nail haven’t been able to hold together. My instinct is to try to hide them.

I’ll be hiding my toenails for a while. The right big one pulled the trick where it grows over itself every six months-a little like a paper jam in a printer, I end up with two layers where there should be one. I bruised the left one when curcumin was thinning my blood too much and so will lose that one soon. Another I have left the nail polish on from last November to chart for myself how slowly it is growing compared to the one next to it. Closed toe shoes will be the norm. They are so far gone that a pedicure can’t save them this spring. But for all of their flaws, my nails have always been strong and tough. I have never had to worry about them being brittle.

Until now. I worry about nail polish and its removal causing more issues. I felt a twinge of vanity that usually escapes me (I rarely have any idea the state of my cuticles and my nails are never an even length). I’ve been watching my nails with curiosity. Does their breaking mean I am doing worse even though I feel better? Am I skimping on vitamins or macronutrients I need? Did I do something to them as they grew from my body or did they get damaged by something I did afterwards? Are they something to hide? Are they something I need to protect from my impulse to cover up?

 

nail
Image Description: My thumbnail with jagged lines almost parallel to its curves (which have gotten worse since this picture was taken) resting against a red and yellow piece of fabric

 

On my birthday one of the books I happened to pick up was a National Geographic compilation of some of their best Instagram pictures. I opened to a random page and was immediately struck by a brilliant toucan. The astonishing thing for me that makes photography so spectacular is that there are details that escape our notice when we see stylized versions of the same. A cartoon or painting of a toucan is still gorgeous-but I don’t know that any of them have captured the jagged lines that this toucan’s beak has. I stared and stared because they were the same as my own. I googled what beaks are made of.

 

 

Toucan
Image Description: A large two page spread of a toucan’s beak and head. The red and yellow beak has jagged lines running parallel to its curve.

Keratin.

The same substance our nails are made of.

When I looked at this bird I didn’t see a creature I was worried about, I saw a creature who has lived. And is beautiful. It may be trite, but I am grateful for little synchronicities that remind me that my experiences and imperfections are not unique, and are not embarrassments, and are not alarming problems to always be “fixed”. And that being seen as who I really am connects me to other creatures in ways I had never thought about before.

My Digital Home

Digital House
Image Description: a house with most of it’s siding removed
and some grey siding newly installed on the side

I haven’t blogged in a long time. It isn’t for lack of trying-I tried to post something just a couple of weeks ago and a glitch erased it all, pictures, image descriptions, the whole text. Which is probably a good thing as it was kind of pitiful, as in, I was feeling a lot of self-pity. It felt like the universe correcting me, telling me to try again with a little less blah.

Here I am. I started this blog in 2014 as a creative outlet for myself, a place where I could get short essays down and into the world and feel more connected to it. To have a space that was mine to shape and polish and decorate as I wanted, away from the needs of my two kids and the needs of my errant (and in a nod to Roxane Gay, “unruly”) body. I haven’t been able to use this that way for a bit. Oh, there has been self-promotion here and there, but a little essay every other week? Not so much. And that has started to bum me out.

Sure, there are somewhat good reasons for it.

I got warned by ambitious freelancers to never post a piece to your blog for free until you try to sell it. You know, realizing that writing is work and should be appropriately compensated. A great idea in theory-in practice I am absolutely wretched at pitching, and waiting forever to see if a submission has been accepted or if a pitch has landed is bad for my mental health. It was unsustainable for me. And I have discovered that I am really bad at coming up with timely think-pieces that have enough foothold for a broad audience.

Another factor was that I didn’t want to take what little time I had away from actually completing the book I am working on. It’s a work-in-progress, a collection of essays, a memoir about being chronically ill, that is going incredibly slowly at the moment. Part of the problem is that my illnesses, the subject of the book, keep shifting and changing requiring rewrites and reimagining and review. Time is eaten away quickly.

A third factor has been managing my health. I was diagnosed in January with Lyme disease, and I have most likely had it since I was six. The infection just took over when my immune system was under so much stress from two pregnancies and two C-sections and a recession about eight years ago, and I couldn’t cope anymore. So many mysterious and seemingly unrelated systemic problems came from that. Treatment is hard, many hours of the day it feels as if even my individual cells need deep breathes and stillness. Most of the day is spent letting my body rest. I never let it rest before-because I was diagnosed with fibromyalgia which has no known cause and no known cure I had opted to play through the pain, pushing through because my life was going to stagnate if I didn’t. I had social media schedules where I planned on Sunday night what Facebook posts I was going to post that week. I tweeted. I participated in every group I could get into. I got a blog post done every two weeks. I submitted and submitted and submitted. Then I got tired. And more tired. And more tired. And finally had to stop. Because I just couldn’t go anymore. I submitted, finally, to my body’s needs.

In the midst of this I asked myself what was it I wanted out of writing and getting published. I really thought it through because moving the goalposts was wearing me out. With the election of 2016 I wondered if what I wanted most was to be a voice for change, an activist. I asked myself if what I wanted was to be famous, like David Sedaris, or Jenny Lawson (The Bloggess), having fabulous fun book tours and interviews and the like. Did I want respect, to have the approval of the upper echelon in the literary world? Did I want to have a followers who can’t wait to see what I say next?

Then it hit me. All those things are wonderful. Any of those goals fulfilled would be rewarding. When those goals are achieved by other people I feel envious and there is a tendril in my heart of longing-especially on days when illness and treatment make those goals dance further and further away from my grasp. My real goal? I will do anything in my power to keep being allowed to tell what the world looks like from my point of view.

To achieve this goal, there are barely any gatekeepers. I can do that here, any time I want. I don’t have to wait for editors or agents or the Submittable queue. I don’t need to have an MFA to be allowed to do this. Nor do I need to wait the six months after I enter a contest to find out if the judges enjoyed my work. I don’t have to start my own literary magazine. What I want to be able to do, I already can do. It’s rare that that is true, especially in my body. What I really want to do is what I already am capable of doing.

This is my digital home. If I want to write about what Vanellope Von Schweetz means to me I don’t have to wait until I find just the right quirky paying home for that essay. If I want to talk about my son’s broken ankle and how people think he is perpetually miserable about it when he isn’t, I can do that without fighting for a spot in the Washington Post Talent Network, pitching the idea and hoping it doesn’t end up with a misleading title.

I want a place to show the peonies in my garden, and a little girl refusing to play Duck, Duck, Goose just to give the appearance of friendliness. I have that place. I just forget that I already do.

The other day at Ulta I found myself looking at every shade of lipstick, drawn again and again to the reds, which is unusual for me. I almost shelled out 35 bucks for a lip liner and lipstick. Then I realized that although I hadn’t used it since a gala fundraiser in 2015, I had an almost identical red at home. Here’s to using the clothes and the makeup and the utensils and the tools we already have before going out and buying more. Here’s to remembering that if what I want to do is be allowed to tell my stories, I already have a way to do that.

Here’s to putting up siding, painting the hallways and redecorating my digital home.

New Essay at Full Grown People- “Spectator”

Rectangle of outside
                                          The Rectangle                                              Image description: A picture window that shows a wintery outside world

 

Hi Everyone!

It’s been a bit since I posted, huh? I am really happy to be able to, to let you know I have a new essay up at Full Grown People today called Spectator. It is about living life watching instead of participating, because often that is what I am able to do. It is also about parent participation night and third grade basketball. It’ll all make sense, I promise!

Love,

Kristin

 

N Basketball
            The Basketballer as a Third Grader                  Image Description: A smiling brown haired boy in an orange Illini jersey sitting at a table