When Things Need to be Pushed Back for My Health to Come First 

So much of life is about prioritizing. There is limited time in the day, and while I believe it is possible to accomplish a lot, I don’t think a lot can often be accomplished at the same exact time. Sometimes, things have to be set down, often unexpectedly, so other things can be prioritized. 

But that doesn’t necessarily mean saying “no” to things. Often it means saying “not yet.” You can feel powerfully committed a goal, and realize it’s not the right time to pursue said goal. It can be very painful to admit to yourself, and even more painful to admit to others, that you’re going to put something on pause in order to focus on something else. Maybe you’ll even feel like a failure: even if you know in your heart, 100%, that it’s the right thing to do. 

This is the place I am right now with the novel I am planning on self-publishing.  I 100% am passionate about self-publishing my novel project. Panic Cat, which will be the first in a four part series, seeks to raise awareness and destigmatize issues of clinical anxiety and mental illness and reframes my protagonist’s chronic and mental illnesses as her superpowers rather than her weaknesses. It is a project I am incredibly passionate about, and I know I will continue to pursue its publication with vigor in 2018.

However, my goal up until recently was to get it self-published by the end of this year or the beginning of next, and I now see that the goal, though admirable, needs to be set aside so I can focus on something that is more pressing right now: my health. I am waiting to see if I will need to have brain surgery for my Chiari Malformation at the end of this year. Meanwhile, I am focusing on that, and on my body and symptoms and management, while also having my hands full with continuing to thrive to the best of my ability in my work as an educator, in my faith as a young Christian woman, and in my family life as a devoted wife, mother, daughter, sister, and friend. 

It is not an easy or natural thing for me to press the pause button in my life. I graduated from college a semester early. I completed a master’s degree at 25. I was married and had a baby during that time, and was hired into my dream job. Check check check. My goal has always been to climb ladders, check off boxes in my personal and professional lives, get things done as quickly and well as possible. And then…i got sick. I’m not going to sugarcoat it, because in a lot of ways, sickness and disability are horrible. But there is an upside, and that is that it forced me to slow down and focus on what is truly, truly important. Illness forced me to prioritize. And right now, my priority is my health. 

The thing about prioritizing is it sometimes feels like quitting, even though it’s not. Sometimes it feels like failing, even though it’s actually the opposite. Sometimes I worry that this means I peaked at 25, and my success is downhill from here. But then I have to remind myself that there are so many different definitions of success. And knowing myself and my body and my own limits and needs is just as successful and inspirational as publishing a book. I am young, and have plenty of time to meet other goals. But I only have one body, and I need to focus on treating it as well as possible. So it needs to be my priority right now. Everything in its own time.  

To my readers who are looking forward to reading my novel: thank you so much for your understanding. I will continue to pursue publication, it will just be on a different timetable. 

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September and My Constant Companion: My Chronic Pain Awareness Story 

“You’re never as alone as you think you are. People don’t tend to broadcast certain kinds of pain, so you often don’t see it.” 

Last week, I wrote about my Chiari Malformation story for Chiari Malformation Awareness Month. You can read it here. Chiari is a brain condition that falls under the category of rare disease, but is actually more common than people realize. However, few talk about it. It affects me with chronic pain every day. 

It is also Chronic Pain Awareness Month, so I decided to write a separate post specifically about my battle with chronic pain. I don’t honestly talk about my battle with pain very much, and haven’t written a post specifically about it yet. Chronic Pain affects millions of people every day. Back pain is the 2nd most common reason people go to their doctors after colds. And yet pain can make people–especially young 26 year olds, supposedly in the “primes of their lives”–feel terribly alone. That’s why I’m writing this post: to remind people with painful conditions that they’re not alone. 

I have two related conditions that cause lifelong chronic pain, Ehlers Danlos Syndrome and Chiari Malformation. In my previous post, I explain them both using child-friendly metaphors, since I am an educator who works with children, and also a mother. I also came up with an educational metaphor for my chronic pain. 

Imagine that everyone has an invisible stoplight above their heads that tracks their pain levels. Green means “Go”: no, or very little pain. “Yellow” means “slow down”: I’m in pain, moderate and often crippling levels, but I’m still able–or at least have–to do the regular tasks in my life, if at a slow, gentle pace. I work, I parent; but with every motion, I am aware of pain. Everything I do sends up a yellow flare: “slow down! You are in pain!”

And then there is red: “stop!” This is when one is in so much pain they are unable to do anything else but think about the pain.  

I mostly live in yellow. There’s a whole lot of “wait” that goes on with my–and many other people’s–chronic pain. 

My pain scale also has adjusted as I have learned to live, necessarily, with chronic pain as my constant companion. 

Here’s the thing: I’m never truly free from pain. I never don’t have a headache. I suffer from costochondritis, or chest wall pain that has been severe enough to make me think it was a heart attack, almost daily. I have had several severe pain attacks that have sent me to the emergency room, but my day to days, when I go to work, run around with kids, have fun, and live out my call are never pain-free. 

My pain makes me have to make hard choices. Right now, the hardest pain related choice I’m facing is brain surgery on the horizon for my Chiari malformation. The only way to possibly reduce my Chiari pain long term is through surgery, called a Decompression, and I have already reached the peak of what other methods, such as medication and exercise and diet, can bring me in pain and symptom relief. But surgery is not a cure, and in some cases, surgery opens the gates for more pain and more surgeries. 

And on top of this big pain related choice I’m wrestling with–update to come, I make little pain related choices every day. Should I run around with my daughter and risk being in extra pain for another three days? Will taking an extra shift at work make my pain keep me up with painsomnia the next night? While my pain doesn’t define me or my life, it does factor into many of the choices I must make, big and small, on a daily basis. 

While I have learned ways to reduce the pain, none of them completely get rid of it. Some days, the medications I take really help. Some days, exercise does; some days, rest does. And some days, none of these things help. Some days, I just push through and hope the next day will be better.
Often, I have a positive perspective about my pain. I admit, I don’t always. Some days, my pain defeats me. I let my pain get the best of me, and I feel like I am nothing other than my pain. It also makes me feel very alone, even when I am surrounded by others. And I am sure I am not the only one who feels this way.

There is a print of a wolf, done by the incredibly talented The Latest Kate, that hangs behind my dresser in my bedroom. The white behind the wolf, which you can see above in this post, is “You’re never as alone as you think you are. People don’t tend to broadcast certain kinds of pain, so you often don’t see it.” 

This quote serves as daily inspiration for me. Pain makes me feel unnecessarily alone so often. People are scared to talk about their pain. I’m here.  You are never alone. 

I encourage people, if they feel open to doing so, to share their pain stories with others. Vulnerability and honesty is one of the best things we can do to deal with our chronic pain. No, it won’t take it away, but it will remind us that we are not alone in our pain. We are all human, and all together. We can live our best lives despite our pain, and it is hard, but we can do it: together. 

September and My Broken Brain: My Chiari Awareness Story 

September is Chiari Malformation Awareness Month, as well as Chronic Pain Awareness Month. I experience Chronic Pain due to both my Chiari Malformation and my Ehlers-Danlos Syndrome (which has its own awareness month in May.) I will be writing a separate post for Chronic Pain Awareness month on my own experience and relationship with Chronic Pain, but this post is specifically on my experience and journey with Chiari Malformation. I have mentioned that I have the condition regularly in my blog, but I have not really talked in depth about it or about how completely it affects my life. 

Arnold-Chiari Malformation, or simply Chiari Malformation, is a condition where brain tissue from the cerebellum extends too far into the spinal canal. Usually, as in my case, it is a birth defect, but it is not discovered until later in life, on an MRI. It is often asymptomatic, but can just as often cause very extreme symptoms, as it does in my case. Symptoms include headaches, neck pain, coordination issues, dizziness, vision, voice, and throat problems, and various complications that can arise, including fainting and blacking out: which is how I first discovered that I had Chiari in 8th grade. 

It has taken a while for me to come up with a teachable metaphor to explain Chiari Malformation to young people. I believe it’s important to be honest about my medical conditions both with my daughter and those I teach. I have found it to be such a great character building tool, both in promoting empathy and teaching them they’re not alone, since so many kids have health conditions like asthma, allergies, and disabilities, and it’s really inspiring for them to see a teacher who has conditions too but still plays with them and teaches them. 

I explain my other condition, Ehlers-Danlos Syndrome, as my body being like a chair held together with bubble gum instead of glue. Chiari is like hard boiling two eggs, shown in the picture I drew above. A non-Chiari brain is the regular egg. A Chiari brain is the overboiled egg, that has some extra egg hanging out of the shell. In a body, it hangs into one’s upper spinal column.

My Chiari story is a strange one because it is a story of being diagnosed, forgetting I was ever diagnosed, and rediscovering the diagnosis years later. I had migraines from an early age: really, as long as I can remember, I have had severe headaches on and off, to the point I would vomit they were so bad. And I had a bit of blacking out upon standing as well, but I’ve always been quite tall for my age, and my mom had it too, so we figured it was just a blood pressure thing in me like it was in her, nothing to really be concerned about. I was regularly seeing doctors all through this time, who agreed. 

But then, in 8th grade, I switched from playing the trombone in band to playing the tuba, and for this tiny girl to start playing a huge instrument was the trigger I needed for my birth defect to really rear its head and start being seriously symptomatic. When I fainted during a tech rehearsal for a musical I was on props crew for while lifting something–Chiari is often made worse by bending down and lifting–I got an MRI in the ER, and they discovered my malformation. 

Chiari Malformation is a lifelong, incurable condition. It is also not dependant on the size of the herniation, or amount the cerebellum is extended into the spinal column: one can have a large herniation and not be symptomatic, or a smaller herniation and be extremely symptomatic. Surgery can be extremely helpful for some people, and for the most part carries few risks, but is not a cure. Many develop new symptoms, or need repeat surgeries. Because of this, despite meeting with a renowned pediatric neurosurgeon and Chiari expert in another state, my parents decided to not go through with the surgery, and together with my medical team and symptom management hoped that I would outgrow my symptoms. 

And, seemingly miraculously enough, it seemed like I did grow out of the symptoms. I stopped seeing neurologists and neurosurgeons, and my doctors in MI completely. I moved several times and never got my full medical records transferred. And I completely forgot about my 8th grade Chiari history when I started having terrible migraines shortly after the birth of my daughter. 

Since the symptoms were so different, my mom, who remembered my Chiari, unlike me, didn’t connect the dots and remind me of my diagnosis. Over a year after the migraines, and later horrible all over chronic pain and many other symptoms, I was misdiagnosed, in July of 2016, with fibromyalgia. 

The dots were finally connected in December of 2016, when I was 25 years old: over a decade after I was originally diagnosed. Now, at 26 and still extremely symptomatic, and having reached the limit on what we can control with other symptom reduction methods such as medication, surgery seems our only potential option, and I am leaning towards it, consulting experts and making plans. But it’s still not an easy decision, as a mother, an educator, someone who knows that it’s not an easy fix. I want to live my best possible life to live out my call; for my family, for all my kids, biological and those I teach. Will surgery help with that? It’s something I think about, and pray about, over and over again. 

Until then, I believe it’s so important to raise awareness about Chiari. It may not be well known or extremely talked about, but it is more common than you think, and what the Chiarians in your life could use is awareness and support. Each day with this illness is a battle, but I am convinced that if I work hard enough, I can find the teachable moments in it, both for myself and for those for whom my life will hopefully inspire: especially the next generation I teach. 

Know My Novel!

The main reason I created this blog at the beginning of 2017 was to have a place to document my journey to become a novelist as I moved towards publication of my novel, Panic Cat. As frequent readers of the blog may have noticed, there have not been very many posts specifically on my novel. That is because I didn’t really know what direction I wanted to go in, publication-wise. 

 So now that I am for sure pursuing the self-publishing direction, this blog will be a place where I will be putting content related to my novel and the release process. I’m going to start out today by telling you about it. You can see my first post about it, a tiny back cover blurb, by clicking here
    Panic Cat is obviously hugely a work of fiction, as you may be able to deduce from that blurb. The main fantastical element is that while Cayla Catherine “Cat” Leeds, the main protagonist in the book, has suffered from panic attacks and anxiety for years, when she is 24 and experiences a significant loss in her life, for the first time she has a vision that accompanies her panic attack. 

  However, while it is a fantasy novel, Panic Cat is also an incredibly realistic emerging adult coming-of-age story, and one of the most personal works I have ever written, with a strong focus on mental health. One of my largest attempts with writing and publishing Panic Cat is to help erase the stigma around mental health issues. 

  Cat’s first panic attack, detailed in my book’s first chapter, triggered by a major trauma in her life when she was eighteen years old. The book then skips ahead and finds her at 23. Now, Cat is a mother, student, and works as an assistant director at a preschool. She is not defined by her anxiety, though she sees it as both a reality and a major weakness and a major weakness in her life. However, throughout the book and especially the series, her anxiety and panic attacks are reframed as a learning experience and something she can channel into a strength. 

   Most of the book is set in Israel and Palestine. A little over two years ago, I traveled to this region as part of my cross-cultural requirement for my Masters of Divinity degree. Like myself, Cat is a Divinity student traveling to Israel. Unlike myself, Cat has a vision of a powerful politician being murdered in Israel, reveals that vision to a police officer friend, and becomes embroiled in an international investigation: and her greater true calling as someone with greater power, and a greater job in the grander scheme of the universe, than she could ever possibly imagine. 

 Other than Cat, there are several other very significant characters to this narrative, all whom you’ll get to meet in future posts. These include David, a classmate of Cat, who traveled to Israel with her and her class; Elias, Cat’s husband; Marlowe, Cat’s daughter; Emily, Noag, and Cole, police officers working the case alongside Cat, and Nadia, Noah’s fiance. 

 The novel is first in a four-book series. While I have not written the other three books, I do have an idea of where the general arc is going to take me, though a character or two always ends up surprising me during the writing process.

 
 Panic Cat was a joy for me to write, and I hope it is equally wonderful an experience for its readers once I release it out into the world (though obviously no book will be everyone’s cup of tea). 

 Much more will come about my novel in future posts. I look forward to continuing pursuing the self-publishing process, and I look forward to you all journeying along with me! 

How I Use Daily Scripture Reading as Healthy Coping as a Christian with Chronic Illness 

The self-care I’m writing about today comes directly out of my perspective as a Christian with chronic illness. Many of the things I write are applicable to people of many diverse faiths and worldviews, and I so appreciate the many friends I have from so many different faiths. The posts I write about my own religious practices are not to alienate anyone who feels or worships differently, but to show how I, personally, integrate my Christian belief system into part of a holistic self-care method to be my best, wellest self with chronic illness. 

As I’ve written about a lot on this blog, my resolution for 2017–which was one word rather than a laundry list of goals–was wellness. Unlike physical health, which I often cannot control, I could make a commitment to be holistically well. I could make good choices in mind, body, and soul that would lead to overall wellness. 

 I knew that in order to do this, I would need positive coping mechanisms, of which I did not have very many. I am not a huge hobby person, and I knew picking up a hobby would not be a good coping mechanism for me, as I would not have the mental or physical energy to devote to it. I already devoted nearly all the energy I have working as an educator and to my family, as the married mother of a three year old girl. I also try writing wherever I can. My healthy coping mechanisms were taking long baths and drinking hot coffee and tea, and watching a couple tv shows, but I really needed something to occupy my mind during those pursuits: something that didn’t take a ton of brain power, but was constructive, not destructive. Usually, I turned to mindlessly scrolling social media, which tended to be pretty destructive and fuel my anxiety through its mindlessness and politics. 

 So there I was, until I latched onto my most effective coping mechanism: scripture reading. 
 

 For someone who has identified as a Christian since she was two years old, reading scripture almost seems obvious. Why wasn’t I doing it all along? 

 And I did, here and there. But I had never  really made Bible reading a regular, daily part of my life. I would go to a camp or conference or retreat, or start a new year, and I would become inspired and energized to read the Bible every day, or read through the Bible in a year, but that momentum rarely lasted. I would get a new Bible, and I would love flipping through it and highlighting it at first, but after a month, I would fall back into the busyness of life, and there it would sit, its newness not fitting into my old patterns of meds and work and family and rest and catastrophe and pain and doctors appointments and diets and allergies and everything else I deal with as a chronically ill working mom. 

 Two things really changed my commitment to scripture for me. The first was my 2017 word of wellness–so, in a way, getting sick, because I never would have thrown myself into scripture if I wouldn’t have been so desperate for wellness after getting so much sicker after the birth of my daughter. However, it was really a delayed quest: my pregnancy, that brought out all my health issues, started back in mid-2013. 

 The second thing that helped jump-start my use of scripture as coping mechanism was my smartphone, of all things. Like I said earlier, one of the not-so-healthy coping mechanisms I often found myself resorting to was mindlessly scrolling through social media, often a lot longer than I intended. It’s a lot easier, with my often-sore joints, brain fog, neck pain, eye pain, and other symptoms due to my EDS and Chiari for me to hold and focus on  a smartphone than a book. 

 I started using the free YouVersion Bible App way back when a pastor at a previous  church in a community I worked at while in grad school recommended it for a whole-church plan the church was doing–an overview of 100 important scriptures in 100 days or something like that. It was back when I didn’t finish what I started, scripture wise, so I didn’t finish it, and I think I even uninstalled it from my phone, but I had knowledge of it when I started my year of wellness. 

 I started slow, just reading Psalms and Proverbs. In February, I added the New Testament, too. In March, I hit a rough patch in my life when I was transitioning jobs and really, really needed a coping mechanism. I could have thrown myself into all matter of unhealthy things, and briefly considered it. I was absolutely terrified I was going to have a crisis of faith and start losing my beliefs, especially since I wasn’t working in a church. 

 Because of that fear of losing my faith, I started reading more scripture than ever before. I threw myself into using scripture as a way to cope with my illness, which was a major factor in the transition; with my anxiety; with all my fears–and it was the best thing that could have happened to me. I couldn’t get enough of the scripture. I started reading all the themed devotional plans I could: plans on pain, plans on suffering and hope and anxiety and grief and transition. All things I could apply to my particular situation with my chronic illnesses. 

 I have now finished the New testament and am reading through the whole bible; the Psalms for a second time; and many more themed studies, all for the sake of wellness and coping with chronic illness and thriving through it. I share this not at all to brag, but because it has seriously helped me in ways I could never ever imagine, and I hope it may be able to help orhers too. I do it all in small chunks from my smartphone, usually in bed or in the bath or wherever is most comfortable. 

 Now, quick moment of vulnerability here: I have had this post scheduled for today in my planner for weeks, and have been drafting it for almost as long. But it isn’t done yet this evening, and I need to be real with you: today has been an absolutely terrible day, the kind of day where I was yelling at God at the way home from work, reminding God how much i have done for my call and how much I have given up for it and why does life have to continue to be so hard with all I’ve sacrificed? Who wants to write a blog post about how much they love reading scripture and how much God’s word helps them on a day they were literally yelling at God for life being so hard? 

 Well, I do, because I have to tell you: scripture is /full/ of people yelling at God, and questioning God, and laughing at God, and wrestling with God. And yes, sometimes God rebukes them. But God is always big enough for our emotions. And that’s what I love about the scriptures. 

 That’s why I’ve found them such a haven in my chronic pain. Because they’re not all feel good little sound bites. They’re real emotion. They’re people, throughout time, on a journey struggling with pain and suffering: and a God who is always salvific, a savior who ultimately redeems the story. Something I can hold onto, not in this life but for the next. 

Hello There!

Hello, loyal readers, and new friends! It’s certainly been a while: too long, indeed. Summer has been crazy. Mostly good, although it has posed some challenges. 

One of the biggest reasons I haven’t been blogging has obviously  been my workload. 

While writing is one of my greatest passions in life, an even greater vocational passion is ministry. I see my writing in some ways as an extension of my ministry call, but I also have a strong and necessary call to work with children. I have a Masters of Divinity with a Specialization in Youth and Young Adult Ministry and have studied development of all ages. Even if I did have the opportunity to make more of an income through my writing, I would never want to give up some sort of career working with children, preferably the work I’m doing right now. I’ve never felt more professionally fulfilled. 
 

In March 2017, I transitioned from a job in traditional children’s ministry in a church to a job in an educational setting. This is not unfamiliar to me, as I have previously been a Preschool teacher. From March to June, I worked a split shift (both morning and afternoon with a break in between) I worked as a Before and After School Program Administrator/Supervisor. 

But in the summer, this role transitioned to summer camp, which has been full-time, 9 hour days (1 hour of that a break). It has been rigorous, hard on my body at times, but overall absolutely wonderful. However, even though I can’t wait for next summer to do it all again, camp leaves little time for writing, which is the main reason the blog went by the wayside. 

Hopefully by next summer I’ll have a blogging routine down and will be writing regularly enough that it will continue! 
The other significant challenges have been health related. In early July, I broke my elbow. It healed up nicely, luckily, and I only had to be in a brace and sling for a few weeks. 

Just a few weeks ago, I heard from a brain surgeon who is an expert on one of my major chronic health conditions, Chiari Malformation. I was diagnosed in eighth grade, but forgot about my diagnosis, and just rediscovered it last December. We’ve come to pretty much the end of our rope treating the symptoms, so it seems like I’m headed down the road to surgery. But a lot more tests will come first, so hopefully those get ordered and done soon. Until then, it’s a waiting game, but coming terms with a very high probability of brain surgery has been a big deal of my summer! 

So all those things add up to the perfect storm of why I’ve been away from my blog, and really haven’t written much at all, this summer. But I’m back, and the school year means a  split shift schedule for me and much more time for writing. It also means I have officially decided to self-publish my first novel, Panic Cat! 
There’s going to be a lot for me to learn as I enter the world and journey of self-publishing, and so far my toe is just barely in the water. But as I have updates, this space will be the first place I will put them. I’m really excited about some of the things that are in the works with it, and I can’t wait to share them with you as they come to fruition! Fridays will be the big days that I talk about writing-related scoop, but as we get closer to book launch (date to be determined!) I’ll probably be posting near-daily about it. The goal is to publish by the end of 2017 or very early 2018, but stuff like the previously-mentioned brain surgery may obviously push that back. 
This Wednesday, I’ll be posting a special post, “Know My Novel!,” in which I talk a little bit about my novel and the writing process. I have completed a few draft novel projects before, but none have been as personal or as dear to my heart as this one, and I can’t wait to share it with all y’all. 
I will also continue to write about the subjects that inform my writing in this space. Those are largely faith, family, and chronic illness. I am also working on building my readership, so if you are new, welcome! My blog is nothing fancy. There’s no bells and whistles. It’s just a place I write: I write about writing, I write about life. And I welcome you to journey along with me. 

17 Wellness Lessons Six Months In

Whew! It’s been over a month since I wrote in this blog, and what a whirlwind it’s been. I switched from part-time to full-time and school season to camp season at my Education Administrator job. It is completely exhausting, but I am totally loving it. I have two weeks under my belt, and am totally pumped for the third starting Monday. I get to co-lead my first Specialty camp, Science Camp. I can’t wait for all the fun, messy, exciting science activities we have up our sleeves!

I also celebrated my 26th birthday, and have been having a lot of fun on the weekends with my daughter. I grieved the loss of a wonderful woman, one of my best friend’s mother, who will be dearly missed. And I’ve been writing for an awesome Children’s Ministry Site. 

One of my first posts on here was about my new years resolution, and I figured I should give a six month update! 

Six months ago, at the dawn of 2017, instead of a New Year’s Resolution, I chose a word to define the year. 2017 would be my year of Wellness. It may have seemed like an odd word to choose, as late 2016 was when I was diagnosed with Bipolar II Disorder, Chiari Malformation, Ehlers Danlos Syndrome, and Mast Cell Activation Syndrome. 

But despite finally knowing what was wrong with my body, it wasn’t like anything had changed all of a sudden. I had been feeling very unhealthy for very long: and, more than that, I felt unwell. I felt off-kilter, body, mind, and soul. Surviving, but not thriving. I knew I could do better, for myself and those I loved. I needed to make a change: I needed God to make a change within me. I needed it to be well within my soul. And that is why I chose the 2017 word of wellness. 

A little note before we begin: before I started this journey, and even during the first few months of it, I was a huge wellness skeptic. I didn’t used to be–like I said, I was relatively well in college, and I was gluten free most of that time, which made a major impact on how I felt and our energy levels. Most of the food at our wedding was even gluten free. But then I got pregnant, more major health issues started, and I fell into this thought trap of “it doesn’t matter what I do. I’m always going to feel bad. It’s a crapshoot.”

So if that’s where you are…trust me, I was there in the not so distant past. Solidarity. There is hope. 

1. Start Strict.

For some, starting small might be better advice. But for me, I’ve found that better wellness comes when I try to do an overhaul all at once and gradually add things back in. For me, this means doing an elimination diet, then adding small quantities back in, to see how much, if anything, my illnesses and body can handle. While I’m doing that, I also try to start being healthy in other ways, like starting slow, gentle exercises and enough fluid consumption, at the same time. 

2. Stick With it.

My problem with this method, as you might be able to tell from the phrase above “usually start,” is that, yep, I’ve started more than once. I always find myself getting sick a few weeks in: and then promptly giving up, and deciding that’s my body’s way of telling me it’s going to get sick no matter what I do. But when I started really trying to commit to total wellness again, including in eating and exercise, the two areas falling by the wayside, about two months ago, I pushed through. I did research, and found it was common for bodies to respond to the stress of a new diet by getting sick, but that was no reason to give up. I had two bad colds within a week and a half of each other. It was miserable. But I stuck it out, and am glad I did.

 Even through those colds, I felt myself getting stronger, my stamina slightly increasing, my energy slightly upping. And now, after them, it’s way higher. And nothing that I thought was going to be a cold since has been more than a half day’s scratchy throat or allergies.  

3. Find out which typical ways of wellness work for you: and which don’t.  

Two of the most-frequently suggested easy wellness tips to try for beginners tipping their toe in better living are upping their water intake and decreasing their caffeine–in my case, coffee, intake. Now, I wasn’t a huge coffee drinker, but by October 2016, I was usually drinking 2-3 cups each morning, switching to caffeinated tea after that. I switched to herbal (no caffeine in the varieties I drank) tea in the evening. I never drank any additional water.

In the end of October, I committed myself to making healthy lifestyle changes for my misdiagnosed fibromyalgia. Two of these were near completely cutting out caffeine and drinking a ton of water. For most people, these would have been awesome things to do to help their chronic illness. For me, it sent me into a month long migraine with a months worth of nausea that ended up with me discovering my Chiari Malformation, with my EDS diagnosis not long after. 

Turns out, caffeine is super helpful for my Chiari. It helps more than any of my medications do. Without it, I feel like my head is going to explode. And plain water, especially in large quantities, makes me feel like I’m going to vomit because my electrolytes are usually out of balance. My doctor recommended I drink electrolyte fortified water or a watered down sports drink like Gatorade. 

Again, the lesson here is not for you to go out and drink a bunch of coffee with a Gatorade chaser. That could be abysmal advice for you. We are all so different. The lesson is that spoonies are all different, and everyone’s quest for wellness will look very unique. 

4. Hydrate

Even if water doesn’t literally make you vomit, it can be really hard to get your required allotance. Trust me, I know. And this has always been one of the pieces of advice I rolled my eyes at so much. Probably for two reasons: one, trying to drink a lot of water made me throw up, and two, it was often presented in a snake oil salesman speech: “just drink water and your genetic and/or incurable conditions will be totally cured!” 

But here’s the thing: I’ve been outside way more in the last few weeks, and I’ve also been hydrating a lot more in the last few months, and even when hydrating is the only thing on this list I can muster (other than meds) for the day towards wellness because of pain and fatigue, it still helps me tremendously. 

My sub-tip to this tip is find a water bottle/drinking vessel you love, and carry it with you everywhere. Mine was an epic search that ended in a pretty simple, and funny, place. I have spent years and many dollars trying to find a water bottle I loved and would actually drink out of, to no avail. From $5 to $20 ones, I hated them all, and would stop using them after a few times, giving them to my husband or Goodwill or my daughter. Finally, though, on the way home from work I stopped home at the Dollar Tree and grabbed one of those tall, skinny Gatorade squeeze bottles for a dollar. And you know what? I love it as a refillable water bottle! It’s easy to refill with half Gatorade from the bigger, squatter bottles and half water from a drinking fountain; lightweight; cheap; easily replaceable; fits easily in a bag and cupholder; dishwasher safe; doesn’t leak; easy to drink out of; easy to open and close. Basically, my perfect water bottle, and makes it so easy to hydrate! 

Also, it doesn’t have to be water. Fruits, vegetables, and all liquids (preferably caffeine free) contribute to your hydration allotance. Perfect for summer, watermelon is over 90 percent water! 

5. If you want/need to work, find work that’s worth the pain. 

I really love working. I love my fields–Education and Faith Formation. I just graduated with my masters last year. Working gives me such a sense of purpose.

That being said, work also can be really stressful on my body, especially full time work. I have learned that the hard way. Stress tears my body apart, and there have been many days where I have questioned how long I can plausibly keep doing it. 

Luckily, I have settled into my still fairly new job, and most of these thoughts have dissapated as I have realised how much I truly love my work and how much true true joy and fufillment I get from it. It definitely contributes to my total wellness. There are certainly hard days, but the good days more than make up for it. I don’t forget that I’m ill at work by any means, but I’m able to set it aside in most ways and focus on my passion for what I get to do.

6. Forgive Yourself

It happens. You willl mess up. You will cheat on your diet. You might feel totally unwell. I have had these moments. I have felt like totally throwing in the towel. I have had to remind myself to forgive myself and try, try again. Each day is new.  

Along with this, if you don’t have a true allergy or disease that absolutely forbids you from eating a certain thing and are instead avoiding them for health reasons, because you feel way better without them, it’s ok to have a treat from time to time off your diet. I do. But I make sure not to do it too often. I know my body well enough now to know I won’t feel poorly if I eat one cookie, but I will if I have any other gluten that day, or if I have a glass of milk with that cookie. 

7.Sneak In Exercise.

Exercise stresses me out when it’s another thing on my to do list. There’s just not enough time in the day! So I try to incorporate movement throughout my day. I watched some YouTube videos on movement and yoga for those with chronic illness and try to do similar stretches, various muscle strengthening exercises and movements throughout each day.

 I try to move around and play with my kids at work as much as I can, and do active activities, like trekking around the zoo, with my daughter on weekends. It used to be even the smallest amount of walking caused me great pain, but I really have seen awesome changes in what I can do over the last few months. I still have pain, and I’m still really hurting after a day of activity, but it’s incredibly worth it. 

8. Take Your Meds. 

For years, I have fallen into this weird mind trap, that no one in particular ever taught me, that meds are supposed to only be used short term. Get in there, fix the problem, stop using them. Well, that’s fine and dandy with a cold or a yeast infection. It doesn’t work with chronic physical or mental illness. I have finally, after years of hoping for some strange reason, despite my doctor saying otherwise, accepted that taking my medicines will likely be a lifelong thing. And you know what? That makes sense, because my conditions will likely be lifelong things. So why wouldn’t their treatments be? My doctor and I have found a treatment plan that works very well, and there’s no reason to be ashamed of taking them. Medicine helps contribute to my overall wellness, and I am thankful for medical advances that help me thrive. 

9.Get Outside. 

One of the best things about my job, and having more energy to do more with my three year old daughter, is that I’m getting outside a lot more. Early in this diagnosis journey, I was diagnosed as vitamin D deficient, just like, umm, pretty much everyone in the rarely sunny Midwest, but at that time, I sat inside most of the year. Now that I’m outside most of the year, I feel so much better than when I was just taking my supplement. Also, being outside encourages me to move more, in natural ways that don’t feel like exercise and don’t cause a huge strain on my body. 

Now, this one comes with multiple caveats. I am temperature sensitive, so being outside always involves thinking ahead. My skin is sensitive to being outside, so I almost always wear long pants, even when it’s hot. I make sure I’m always hydrating, hydrating, hydrating. I always carry emergency meds, and always have sunscreen, and always reapply. I try to get frequent breaks in the shade, sitting down, and indoors. 

 Others with chronic illness will have other considerations, based on unique needs, but being outside does wonders both on my physical and emotional health. My mood is incredibly improved, even though I’ve never thought of myself as “outdoorsy!”

10. Write (in multiple mediums!) 

I find myself writing a lot. When I am not working, spending time with my family, or doing the practical day to day stuff that has to get done, I am usually reading or writing. 

I write in multiple different forms, and they meet multiple different needs. I message friends that live across the country and world, both that I know in person and in parenting and chronic illness support groups. I write in a personal journal. I write a novel. And of course I blog. Just getting words out there for me is incredibly cathartic. Each of these are honest expressions of what I am feeling, and each meets a slightly different need. 

11.Build a diverse support system.

I am so blessed to have a village of support around me. Most aren’t local, but are only a text or Facebook message away. And, just like with writing, each meet a different need. I have my family, my in-laws, my friends from different stages of life, coworkers from past and current jobs, church families. And then, of course, I have online support groups, both for chronic illness and motherhood, that are amazing lifelines. 

I do my very best to pour into these friendships, even when it’s hard. I am not always the best friend, but I do try to make our friendships reciprocal. I try to help them just as they help me. I try to keep up on their lives. The internet really helps, as I can stay in touch from the comfort of my own bed when I am fatigued.  

12. Be honest: with others and yourself.

Don’t let your default response be “I’m fine” when you’re not. You don’t have to tell everyone everything, but you can tell someone something as simple as “I have a headache.” Many people want to support others, and will appreciate your honesty. Also, be honest with yourself. How are you feeling? What are your needs right now? How can you best meet them? 

13. Do something positive first thing in the morning. 

I try my best to start my day on the right foot. I get up when the house is quiet and my daughter isn’t up yet. I draw a bath, drink hot coffee, take my meds, do my Bible study, and spend some time in prayer and contemplation. 

14. And end your day on a positive note, too. 

I make sure to get at least a few minutes of alone time after work before going to bed. I do my evening Bible study, drink herbal bedtime tea and maybe a glass of wine, and end my day in prayer. 

15. Accept help.

The need for help is not limited to the chronically ill. No one can do life on their own. Let others know what you need, and accept their help when they offer. You’re not being pitiful or a burden. People love and care for you, and they want to help. 

16. Breathe.

Another one of those tips, like “hydrate,” that I thought were so simple that there was no way they could ever work, especially with my complicated body that was such a random crapshoot with how it behaved. But seriously, a few deep breaths calm my body down so much. I can go from stressed to feeling okay and in control in an instant. Focusing on my breath grounds me. It helps me be in the moment, the here and now, rather than anywhere else. It reminds me everything will be ok in the end. If it’s not ok, it’s not the end. 

17. Be Willing to Cancel Plans and Take a Nap 

Even the best laid plans of wellness aren’t worth if you’re too exhausted to carry them out. Don’t feel guilty about sleep, ever. Sleep is one of the best gifts you can give your body, for anyone, but especially the chronically ill. If I’m feeling just unable to do the stretching or journaling session I’ve planned, I’ll go to sleep, and I’ve trained myself to have no guilt about it. 

I am very proud of where I have come in terms of wellness in the last six months. It is definitely the most growth I’ve seen within a single half year period, and i do genuinely think my chronic Illnesses helped me get there.

 Now, don’t get me wrong: this is not to say my chronic illnesses aren’t a challenge, and thst there aren’t moments, many, many moments, every single day that I don’t have the pain from them. Because there are. It is often excruciating. But, I do my best to wrestle blessings out of them and see the lessons: and the road to wellness is one of the greatest lessons. I may never be healthy, but I can be well, and i can’t wait to see how much more well i am in six months. 

What I’d Tell My Chronically Ill Self if I Was Considering Having a Child

Recently, I got back in touch with an old friend of mine whom I hadn’t spoken to in years. This friend, like myself, bravely struggles with both chronic physical and mental health issues, as many, many people do. She is also considering having children, and asked if I could consider writing some posts about how I balance being a mom with chronic illness issues. 

My daughter is now three years old, and she was a complete surprise. When she was born, I was not yet diagnosed with Ehlers-Danlos Syndrome, Bipolar Disorder,  or Chiari Malformation, though I definitely struggled with these issues during pregnancy, even if they didn’t have labels yet!

If I were to be in my exact level of sickness that I’m in right now, but not have a child, here are the nine pieces of advice I would give myself while considering whether or not to have a biological child. 

1. It is likely pregnancy will be very hard on your body. 

I may have had no idea that I had EDS while I was pregnant, but what I DID know was I felt sick: so very, very sick, pretty much the entire time. There was no break from the misery, though it did come in many different flavors of miserable. 

I threw up multiple times every day. I couldn’t even keep a prenatal vitamin down. I had back pain that was so bad, I was in the hospital overnight. I had several early labor scares and one “threatened miscarriage”, where my body tried to miscarry my baby and I ended up in the emergency room, scares. I had horrible acid reflux and pain everywhere. 

This won’t necessarily be everyone with chronic illness’s experience, but it was mine. Pregnancy was incredibly hard for me. Some people say you forget all the bad parts about pregnancy as soon as you have a kid, which is great for them, but definitely wasn’t the case for me. I still remember my rough pregnancy vividly! 

2. You might grow disheartened comparing yourself to healthy pregnant people/moms.

Over three years later, it’s still hard for me to see people’s healthy, happy pregnancy pictures on Facebook. I knew my mom loved being pregnant, and it was really hard for me that some people have this awesome pregnancy experience and mine was so hard. It resulted in a weird guilt/sadness mixture that still persists.  

3. Some issues might be better during pregnancy. 

I had a physically horrible pregnancy, but mentally it was surprisingly great. My anxiety and panic attacks went almost completely away during pregnancy. I also could eat gluten without getting sick, which I definitely couldn’t do for two years before and can’t do now! 

4. Having a supportive partner is crucial…

My husband is AMAZING. Seriously, if I wouldn’t have had such a supportive partner, I don’t think any of this would have been possible for me (maybe it would have, but I can’t even imagine!). Open and honest communication about what you are feeling and what your limits are, and what you need, is crucial. My husband was in full time law school at the time, but still made so much time for me. He ran so many errands, getting me support belts or new clothes or medications or the rare food that didn’t make me throw up. 

And it’s important that the support continues once you have a child, too. Having a kid while I am chronically ill works because my husband and I are a solid team. He knows my chronic pain and other symptoms limit me, but he doesn’t see me as a burden. He picks up where I can’t, and I focus on my strengths–giving her baths, taking her to school–so he can take breaks too. We never keep score of who’s done what. We both work together, and love each other and our daughter. 

5. …as well as others who make up a strong support system. 

I don’t live near most of my support system (which I plan to write another post about soon). My family and most of my friends are 5+ hours away, and my husband’s is 2 hours away. We have some good local friends now, but didn’t when I was pregnant. 

That being said, your support system doesn’t have to be within walking, or even driving, distance for them to be a good support system for you during a chronically ill pregnancy and raising a child. The internet was awesome. And my far flung family and friends still ended up throwing me three baby showers. The outpouring of long distance love and support I got meant I rarely felt lonely, even far from family. I also joined an online moms group, and made some incredible friendships through that too. 

Getting involved in churches has also been an incredible source of love and support. We moved to a new city the day I found out I was pregnant, and one of my first priorities was to find a local church so I could be surrounded by a community of like minded people. I’m so glad I did! They prayed for me, did a meal train for me when I was on bedrest and after I just gave birth, and some even visited me in the hospital. It was great having those local connections to help sustain me in a new community. 

6. Your symptoms might get worse after giving birth. 

I am not sure I’d even know about my EDS or my Chiari had I not given birth. My issues increased tenfold postpartum, especially my pain and headaches. 

7. Chronically ill moms are different in some ways than other moms…but not just in negative ways. 

Yes, I have limits as a chronically ill mom: but I also have strengths. I know perseverance well, and I encourage my daughter to never give up. I am extremely caring and empathetic, and pass those traits on to my daughter too. My daughter knows mommy gets sick a lot, but she’s incredibly understanding for a three year old. I make adaptations to make parenting easier: we hang out on the bed, in the bathtub, wherever is comfiest. She knows mom has to take medicine and eat special food. I think it’s giving her quite the others-focus and servant’s heart already, and that’s so beautiful to see. 

8. Self-Care will be incredibly important. 

“Mommy martyrdom” is a huge risk for all moms. It is what happens when a new mom tries to do it all, and grows burnt our and resentful in the process. This is to be avoided in all moms, but especially those who are ill. Regularly crossing your limits isn’t healthy for you, your spouse, or your child. It is essential to have strong self awareness and systems of self care in place. Taking a break isn’t selfish; it’s essential. Not only for you, but for modeling taking care of yourself for you child! Because don’t we all want children who take care of themselves and think they are precious, something to be respected? In order to have well adjusted children brimming with self worth, we have to acknowledge our own inherent worth and treat ourselves well, too. 

9. Your kid will be alright. 

You are not dooming a kid to a life of misery by being a chronically ill parent. Kids need love, boundaries, affection, and role models, and no one has to be in 100 percent perfect health to do that. 

If I had to do it all over again, even with the foreknowledge that I would get sicker post-pregnancy, I would choose to have my daughter again any day of the week. 

But I also understand that having a child when chronically ill is a very difficult choice. My illnesses are the biggest reason my husband and I do not plan to have a second biological child. But I am also incredibly thankful for my daughter, and I wouldn’t trade this experience of raising her, even with my chronic issues, for anything. 

My Ongoing Struggle with my Diet as Someone with Chronic Illness 

Once upon a time, I was a girl who loved food. It was one of my greatest passions. I loved to eat and try new things. 

There was a little problem, though. 

Things I ate tended to make me sick. I would get sick after so many different meals that it was difficult to pin down what, exactly, my food triggers were, only that I had a lot of them. 

I have tried cutting out things that likely make me sick many times over the years, with varying levels of success. Dairy was the first thing I learned that made me sick, as a kid. I would go through phases where I was good and avoided it completely, but then I’d see other kids eating things and, since my allergies weren’t life threatening, decide the ensuing issues were worth it and would just pretend to not have the allergy. The same happened years later with gluten. The healthiest two years of my life were the two years I cut it out, but I added it back in when I was pregnant and have not been able to have any sustainable healthy diet changes since. 

These last three years since my daughter was born have been a spiral of up-and-down diet choices and declining health. I know that what I eat affects how I feel, but I also know that likely, I will feel badly anyway, because it doesn’t control completely how I feel. So it’s a rollercoaster of conflicting emotions. “Eating well isn’t going to cure me, so I might as well eat delicious things.” “Other people can eat whatever they want. My illness already impacts so many areas of my life. Why does it have to impact my diet, too?” “So many foods make me sick that I don’t even know where to start. It’s too overwhelming. I might as well not try at all.” 

I realized the other day, suddenly, that all of these issues have made me actively afraid of eating. I don’t get the joy out of it that I used to, because planning each meal is a tedious task full of “what ifs”. So I finally go through seasons where I just totally give up and eat whatever I want, knowing that things are making me sick and just ignoring it. 

I am confident, however, that this season of food nervousness in my life won’t last forever, if I finally actually do the work to repair my relationship with food. My 2017 one-word resolution, which I have written on before, is wellness, and total wellness needs to include me healing my relationship with food.

For me, this means several different things. Firstly, it means buckling down and eliminating the foods that are likely making me feel poorly: not just for a few weeks and then giving up, but for a long enough time to track real progress, especially since I really know, deep down, what my biggest food triggers (gluten, dairy, alcohol) are and just don’t want to give them up because they’re ingredients in some of my favorite things and I don’t want to accept that I don’t get to eat them when other people do. My overall quality of life is so much more important than the fleeting joy I get from eating things that are ultimately destructive to my personal health. 

This also means accepting I am different from other people, and diet limitations are some of the limits on my own life I must accept. This can definitely be one of the hardest areas of accepting my chronic illness for me: the comparison trap. I look at other people around my age without chronic illness and often idealize their lives. Doing so depresses me: I imagine them all doing anything and everything they want, unencumbered by illness, while my illness affects so many areas of my life. Does it really have to affect how I eat, too? It’s not like I have life-threatening allergies, so can’t I just ignore them and experience joy through eating cheese, donuts, and the like? 

But what I try and remind myself is that everyone is limited, chronic illness or not. No one gets to do everything in life, and everyone must make very personal choices in what they need to do to live their own personal happiest, healthiest life. I know certain foods are making me feel worse, and in the long run limit me from things I care about more than food: from being at my personal best. So I need to buckle down, commit to this, and make the choices I know will be best for my overall long-term wellness. 

I am not doing it alone, and am thankful for my support system through this. I know in order to succeed in totally transforming my diet and sticking to foods that make me feel better, I need my friends and family to hold me accountable: which they have done an absolutely fantastic job at. 

And I know already that this new adventure of eating healthily and working on wellness in this area will hold joyful surprises as well. Just today I spent a whole morning teaching my three-year-year-old daughter to make carrot “spaghetti” using a spiralizer. We both had so much fun, and the joy made the final product so much better. 

It’s going to be hard, but I hope by the end of the year I can write a post about how my eating habits have transformed and helped me thrive despite my chronic illnesses. I have faith that this is yet another area where I am stronger than my illnesses, and I am committed to following through. 

Piecing Together the Life Puzzle of Being Young with Multiple Illnesses

Being in your 20s, from what I can tell, is complicated and hard and challenging for most people. For those who are chronically ill and mentally ill at the same time, like I am, it holds its own unique challenges. 

Is being 25 with bipolar disorder, Ehlers-Danlos Syndrome, Chiari Malformation, and several other conditions harder than any other way of being 25? I honestly couldn’t tell you, nor would I want to. Honestly, nothing truly good seems to come from comparing one person’s story o another. Everyone’s life holds its own unique challenges. 

What I do know is my own experience, and that each day that I live with both mental and physical chronic illness feels like a day that I am further piecing together a puzzle of how to best live a whole life of wellness and be the person God created me to be, one piece at a time. 

Some days, the pieces slide into place easier than others. Some days, it seems like I’ve completed a whole corner or side to the puzzle, only to completely demolish that corner and start over in a few days or a few months and a few years. 

There are many questions to ask as I assemble the puzzle, questions I can begin to answer now and questions I can’t. Some of these are questions all twenty-somethings are asking, while some of these are questions in which my chronic illnesses play a unique role. How do I find employment that is meaningful, something that is not just a job but a career, something that I can be happy at over a period of time and where I can feel like I’m making a difference? And how can I do that work and still take care of myself at the same time? Is it even possible to work in a helping profession while living with chronic pain? How long will I even be able to work at all? Is it a career I can work long term on a split shift, so I can come home and rest in the middle? 

Where should we settle down and make roots? Should it be in a place where I feel drawn, but am farther from family, or where I am closer to family who can help me through my illness, but have to leave meaningful work I love? 

And what about family? I had my daughter when I was 22, before I was really sick, which I am really thankful for. But my choice to not have a second child is definitely hugely based on my health and my ability to dedicate myself to my daughter but still focus on myself. 

Where does balance, in general, fall into my life? How do I fit my faith in? Do I choose Bible reading, or sleep? Which will help me be more well rounded in the long run? What church do I choose? What church family will support me best professionally, personally, as a mother, as a wife, and as an ill person? Is there even a church that can fulfill all those roles? Will I find time to volunteer? Where does being a friend fall in the midst of all of that? How can I support my friends best admist their lives while seeking adequate support for myself as well, without feeling like a burden? 

Notice that this post has ended up being a lot of questions, and very few answers. I think that’s ok, because that’s where I am in life right now. It’s a fairly good place, but it’s a very open-ended place. It could go in many different ways, and there are many, many considerations to make. 

These considerations are definitely affected in ways both big and small by my chronic physical and mental illnesses. There is absolutely no avoiding that. These illnesses will be there for the rest of my life, so just like anything else that will be there for the rest of my life, they must be considered when I and my husband make major life decisions. But that is not necessarily a bad thing. 

As I work on my 2017 goal word of wellness in each area of my life, chronic illness helps bring definition to my life and helps me trust God moreso than I probably would without this specific set of challenges. While some days, I find very little to be thankful about my chronic and mental illness battle, on other days I am able to reframe these battles and see the ways they help make me stronger earlier in my life. I can’t wait to see the definition they continue to bring, because if I am going to continue to have them, I am going to continue to make the most of them.