Building a Strong Support System with Chronic Illness when you Move Away from your Hometown 

Once upon a time, there was a little girl who really loved her home. Even when she was vacationing at some of her favorite spots on Earth, she still wanted to always go back to her “yellow house.” 

College was a rough transition for the girl. Theoretically, she always wanted to leave home and spread her wings, and she didn’t like any of the colleges close to home, so she selected a small, liberal arts school two and a half hours away. But until a few months in, she was miserably homesick, and even very seriously considered transferring out and attending community college for a couple years. 

But the girl ended up staying in college and making lifelong friends: and one friend in particular, who, the very beginning of her second year of college, she began dating. The thing about this boy is, despite going to school in her home state, the girl ended up falling in love with one of the few out-of-state students at her tiny liberal arts college. 

As may be super-obvious from that story, I am that girl, and I’ve lived in Ohio, about five hours from my hometown, for 4.5 years now, ever since I was married and we moved down here for grad school. We live 4.5 hours on a trafficless day from my family, and three hours from my husband’s. 

In 2017, it’s hardly uncommon for young adults to move away from home to pursue new opportunities, though it’s rarer in the midwest, where I live: many of my co-workers and others I meet grew up in this area of Ohio, and I’m one of the only “outsiders.” That means that while other coworkers talk about their families being close by and having families to help with things like childcare, I’m one of the only ones whose family is hours away. 

I’m not going to sugarcoat it: When you’re chronically ill, especially a young, chronically ill parent, living far away from family and established, longtime friends is often excruciatingly hard. When we originally moved here for graduate school, we weren’t sure where we were going to end up, and, to be honest, we are never fully sure about that. Life is a moving target, and we right now intend to go where life takes us, one step at a time. 

What we do know right now is that moving doesn’t make sense. We have unexpectedly grown roots in this area. We both are in jobs we are excelling in, I have found a supportive church family, and my daughter is thriving at her school. Plus, my medical network is here, important until I get the “Will I or won’t I have surgery question figured out.”

So, as long as I’m chronically ill and find myself in a place where I’m far from my hometown support system, it is crucial for me to build a support system in unconventional ways. This is something I have done overtime: some intentionally, some accidentally, but it has been something that has really helped me thrive and be well in a place that isn’t particularly close to my parents or in-laws. 

My first line of support is my little family, which is my husband and daughter. I have made my home with them, and we are making a new life, new roots, and a new story together. Additionally, those roots extend long distances, thanks to the wonders of modern technology. 

I am so eternally thankful to have the husband I do to walk this path of chronic illness with me.  My husband is my rock through the storms that chronic illness throws at us, and has taken the “in sickness” parts of our marriage vows incredibly seriously since the very beginning of our relationship, even whilst knowing “in health” would likely never be a reality with me and my chronic illness. We got married young, at 21 and 22, and heard that our young marriage would hold lots of challenges, and of course, a chronically ill marriage holds its own challenges. I know my illness affects him in its own ways: illness affects both the ill spouse and their partner. But we are able to talk about it, and he always continues to support me and be there for me, even when I have no clue what I need (which is frequent). We’ve been together over 7 years now and married for 4.5. Life has thrown a lot at us, but our partnership is strong. 

My daughter is three and a half, and she is able to say that her mommy has Ehlers Danlos Syndrome  (even if she can’t fully pronounce it). My daughter is an incredible part of my support system, because she keeps me joyful, and she keeps me grounded. My role as her mother is always more important to her than my role as a sick person. She knows I’m sick, but that matters less to her than the fact that I’m her mom, and there’s so much power in that to me. When I dedicate special time to spend with her, I’m able to forget I’m sick for a while, because I can focus on her. Don’t get me wrong: I still have limitations. We spend a lot of time cuddled in bed together (I will write a post on chronically ill parenting of a preschooler in the near future). But for the most part, we’ve found a groove. She’s not perfect: she’s three and a half, and she has her tantrumy moments where I certainly don’t forget that. But she’s also a sweet, empathetic kiddo a lot of the time. 

After my husband and daughter, the next most important thing that is absolutely crucial to my unconventional support system is social media, specifically Facebook and Messenger. People–especially non-chronically-ill people in certain circles–tend to really bash what they see as the “overuse” of technology. Facebook especially tends to get a bad rap. Every other week it seems like I hear someone talking about deleting their Facebook. 

On one hand, I 100% believe that you have to do what you have to do for your own mental health and wellbeing. That being said, Facebook is a tool, and like any tool, it has positive and negative applications. 

I use Facebook to keep others in the loop about my illnesses. Honesty is incredibly important to me. I give updates on my appointments, prayer requests about upcoming dates that are significant due to my condition, and share my blog and The Mighty posts. I don’t post about my illnesses exclusively: they don’t define my life, and I also share other stuff (mostly pictures of my daughter). I have been amazed by the outpouring of support I have gotten through Facebook, often through people I wouldn’t expect. I have a great community of people who stand in the gap for me and help hold hope for me when I can’t. It also helps inform the people I see regularly, so that when I see them at, say, church, they know what was going on in my week, and know what to ask about. A lot of times a church member or coworker will tell me they saw a Facebook or blog post and are praying for me and supporting me, which is really great. 

I also use Facebook messenger as a primary mode of communication with many out of town friends and family. It has helped me stay close with many friends that live in other states or even other countries. I love Facebook Messenger because I can write back at my own pace, and so can they. I can use it to carry on a conversation immediately, but I don’t have to. With some friends and family, we write long letters back and forth, with days in between; others, short sentences, carried on in immediate conversations. Even though many miles exist between us, Messenger helps bridge the gap and reminds me that I have so many friends that care about me: and helps me care about them and be a good reciprocal friend too. 

Messenger has also helped turn acquaintances into friends. There are several wonderful, strong women on Facebook that I was friendly with in person at several stages in my life (a few in high school, a few at college age) but I was never particularly close with. They read my blog and statuses, and messaged and commented that they were going through their own chronic or mental illness journeys. They have been wonderful sources of mutual support, and my only regret is that I did not become friends with them sooner. 

And then there are my online friends and support groups. I am blessed to have several wonderfup support groups full of online friends: some specifically geared towards chronic illness, some not. These people have become dear friends over the months and years, and an exceptional source of mutuality and support. They may live far apart and I may only know them through my computer, but they are nevertheless essential to my support system. Since many of them are chronically ill as well, many with the same illnesses as me, they understand my struggles in a different way, and therefore can help me in a different way. 

I’m not perfect in a lot of ways, of course. Sometimes, relying on technology means I mess up, and drop off with people who really care about me, like my mom and little sister. I know she is so much better at checking on me than I am on her, and I know I can be accidentally hurtful when I leave her out from my life. She is so caring and reads all of my blog posts, and always follows my health, but I don’t always do my best at updating her personally. 

Technology makes me lazy sometimes. It means I do group updates instead of talking to people individually. Again, technology is a tool. I want to tell as many people as possible, but I end up leaving those closest to me out of the loop. So to those I do make feel worthless: I am so, so sorry. 

My family is of infinite worth to me. My sister is my best friend. We fought like cats and dogs growing up, but I miss her every day now that she lives far away. She cares about me so much, and she makes such an effort to help me out. Technology helps us talk, but I know I underutilize it. Ahain, a lot of it is laziness, and me not being intentional. I need to fill my mom and my sister in first, and that’s something I need to start making a habit of. I think that’s something all chronically ill people can learn from: know who your close circle is, especially if they live far apart from you, and fill them in first, before updating everyone else. They shouldn’t have to hear your updates through the technological grapevine. 

So the next time you see someone on their phone, especially a chronically ill person, chances are, they are not being rude. It is a source of support, love, and guidance to many of us. It is an anchor to me: it is how I get support from my mom and my dad and my little sister and my in laws and the rest of my familh, from God through my Bible app. It does so much more than just aimless scrolling. 

I am also thankful for out of town relatives and their willingness to be flexible and go the distance for us, even when it’s hard. My parents and in laws frequently step up to the plate, and have watched my daughter for weekends and vacations and other extended periods of time to give us a break. The ways they have helped us have bridged the distance considerably, and we couldn’t make any of this work without them. 

Other people locally have made this new community feel like home, and stepped in in emergencies. In situations that have felt dire, the most wonderful local people have stepped in and provided practical help, childcare, and love, making a place that was initially strange and large feel a lot more like home. I don’t talk to all the parts of my support system all of the time, but it doesn’t make me any less grateful. 

Outside of my phone, my two major local support networks are work and my church. I wrote a post earlier this year in church shopping when chronically ill, and I plan to write a follow-up post soon about how finding the right church was a hugely important part of my chronic illness support system. 

Finding the right church helps in a multitude of ways. For one, while my online support system is vast and extremely helpful, living in one’s phone can be very isolating. For me, it’s very important to get out of the house and have in-persom networks: it helps me feel much less alone, much less isolated, and even less sick. 

Since I don’t have family in town to visit, a church helps meet this longing for close social networks. The church I’ve found has an array of social offerings that were easy to get plugged into. I quickly found a great Sunday school class, Sunday worship, and midweek classes for my daughter and I. One of the best parts for a chronically ill person that I’ve found is my church is extremely nonjudgemental when i miss a week or several weeks in a row, or if I need to sit in my car while my daughter attends her Wednesday night class instead of going to my Bible study because I’m feeling too fatigued and ill after work.

 They’ve also been accepting and non-judgemental when I need to sit during the standing parts of the church services. I have found an environment where I am able to be open about my illnesses, and have found myself surrounded by a community that prays for me and supports me along each step of my chronic illness journey. I definitely would feel a lot more alone without my church family. 

Finding a fulfilling job that worked with my chronic illness and also allowed me time to write, rest, recover, and self-care has been absolutely critical. I kind of fell into this job by accident, because the shift–a split shift, with a shift early in the morning, a break in the middle, then going back in–worked with having another job. I quickly decided not to have another job, my illness being a big factor in thst, and to completely switch fields over to education and childcare, and it’s been such a worthwhile switch. 

Being in the right career helps me get out of bed each morning, even when I’m not feeling well. Seeing “my” 50+ kids I work with never fails to put a smile on my face. My work feels meaningful to me, which helps distract from pain and other symptoms. While I’m at work, I often forget I’m ill, which is huge. 

Moving back home is never fully out of the question, nor is potentially moving closer to my in-laws, or somewhere in between my parents and in-laws. But until then, I am thankful that I have other ways to stay in touch with the many people that support me, love me, and make my life full. God did not intend for me to go about this chronic illness journey alone, and luckily I have wonderful people in my life, both near and far, so that I never have to. 

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Holding Out Hope when the Chronic Illness Journey is Long 

One of my favorite metaphors for life, however cliche, is of life as a journey. Having a chronic illness, especially young, is its own journey, and sometimes the legs of the journey can be longer than expected. 

Yesterday, I had one of those times. I had a first appointment with a neurosurgeon two and a half hours away from where I live to meet about my Chiari Malformation. I had built up this appointment in my mind as the End of the Road, but it ended up being an overly quick appointment. The surgeon seemed  very competent, kind, and well versed in Chiari, which was great, but he wanted to be cautious and order more specialized tests before scheduling surgery. Since I had gone in expecting a surgery date set, this was initially a huge disappointment, even though logically I know I need the testing and this doctor is exactly the kind of doctor I want: the kind that is willing to be cautious and order the right testing before jumping into a procedure.

I know firsthand how sometimes my desperation for answers and timelines and treatments on my chronic ilness journey leads me to cling to things that are not best for my overall health journey. In July 2016, for instance, I thought I had finally reached the end of an arduous diagnosis journey, and I was diagnosed with fibromyalgia. But it turned out to be a misdiagnosis. After dealing with that, and treatments that ended up being counterproductive to the Ehlers Danlos Syndrome I really had, I am slowly learning to embrace the journey and the fact that, since these are lifelong, incurable illnesses, this can’t be anything I can rush. It needs to be the right steps on the journey, and I need to be patient so that the journey can take those right paths. 

As validating and comforting as answers and timelines are, the rational part of my brain reminds me that I don’t want answers, or timelines, if they’re the wrong ones. 

One of my favorite stories on The Mighty is written by fantastic contributor Nikki Albert. It was written just over a year ago, and I believe I read it when it was first published, when I still thought I had fibromyalgia, the topic of the story. In the article, titled “Why Those of Us with Fibromyalgia Should Embrace Being Turtles,” Albert writes about the importance of a slow-paced, turtle-like lifestyle for those with fibromyalgia: which certainly applies to those of us with similar chronic illnesses as well. 

Albert discusses how the world can often seem intensely fast-paced, a chaotic rat race, but that those of us with chronic illness can and should, for our own health and wellness, choose a new way to live. This “way of the turtle ” is slower paced, filled with self-care and not comparing oneself to healthy people. She also talks about the #1 lesson I learned in 2016: not basing your worth on what you do, but rather who you are. And since I practice a Christian worldview, for me this means basing my worth in who I am as a child of God, not on any earthly accomplishments. 

Not only should I embrace being a turtle and pacing myself with everyday activities, I also have to remember that the pace of chronic illness treatment–the pace and length of this chronic illness journey I’m on–is going to be different. 

I have sometimes wished through the years, on the hardest days of my chronic illness journey, that I had something “more serious”: that is to say, something that sent my medical teams into what I see as more action. I haven’t thought this because i think those illnesses that are treated like emergencies are easier: on the contrary, I am sure they are extremely difficult and full of challenges I can’t imagine from this vantage point of having never experienced them.

 All it means is that on those hard days, I sometimes long, if I have to be sick, for an illness to which there was a clear treatment plan, and treatment was done expediently, rather than at the turtle’s pace life with Chiari Malformation and Ehlers Danlos Syndrome Hypermobility Type often feels like.

But some of the best advice I’ve gotten this year is that “nothing good can come from dwelling in ‘what ifs.'” I do not live in some hypothetical alternate universe, and never will: I live here, in this world, in this body, and this is the hand I’ve been dealt.

So, my advice to my fellow “turtles” on a long, winding chronic illness journey, that seems to be just getting longer day by day, is this–which is also my advice to myself: for a long journey, pack hope. 

Hope, as I’m choosing to use the word, means living with the faith, expectation and trust that things will continue to progress and continue to get better, even when they seem very hard. Since I am a Christian, my hope comes from believing there is an author of my story–God–who is much bigger than me. 

After my initially-disappointing appointment this week, I am choosing to pack this new outlook for the journey. So what are some practical ways I am choosing to pursue hope? 

In a recent post, I wrote about my scripture habit that helps me as very intentional self-care. I use the YouVersion Bible App and have read through many, many of its devotional plans. One of the most helpful features of this app is you can search for plans using a keyword. So when I was specifically searching for plans based on the life of Joseph, as I talked about in my last post. So right now, I am reading through as many plans about hope as I possibly can. I cling to all the scriptures and promises I can about hope. I also am reading reassuring quotes about hope, and these all serve as lights for my journey.

Another helpful way of keeping hope, for me, is looking over the topography  (using the journey metaphor) of my illness journey so far and seeing how far I’ve already come. A popular phrase I hear a lot in parenting is “the days are long, but the years are short.” This is true in my chronic illness journey as well. Certain days seem unbearably long, but the amount I’ve journeyed in just a year and how much more I know now is impressive. And that gives me hope that a year from now, I’ll be looking back on this leg of the journey and have a brand new perspective. 

A third way I am choosing to pack hope for my journey is by not traveling alone. My next post for my blog will likely be about building an intentional support system with chronic  illness when you have moved away from your hometown. I need to be intentional in sharing my journey, which is why I am very public about my health struggles, and talking honestly about it with friends and family. Isolation leads to hopelessness. My support system carries hope for me and helps me carry this hope for myself. 

Finally, my fourth tip I’ve discovered in the few days I’ve been choosing to intentionally embrace having hope along the journey is to smell the flowers along the way. I am learning to enjoy the little things in life more, instead of obsessing over things like what’s to come next on my treatment journey. Living in and relishing the beauty of the day to day helps give me hope, too  (more practical posts on how I do this are in the works!). 

Notice that never once in this post did I say a chronic illness journey is easy, nor is it something I believe you have to be Pollyanna happy about. I can’t always choose where I’m called to journey with my chronic illness, but I can choose what to pack. And starting now, I’m packing hope.

 Avoiding the Comparison Trap As a Chronically Ill 20-Something 

Wedding selfie!

This weekend, my husband and I went to a wedding near his hometown for two of his high school friends. Some of his friends are people I haven’t seen since our own wedding four and a half years ago. 

My husband’s friends are a group of generally very hard-working, successful people, and I love them all a whole bunch. They are a lot of engineers, pharmacists, and scientists, and already doing very well for themselves in their early to mid 20s. 

At gatherings of people that know each other well but haven’t seen each other in quite a while, the same questions are bound to come up over and over. “How are you? What are.you doing now? Where are you living? Where are you working?” And you, in turn, ask similar questions back. If you know them and are already connected on social media, as I am with most of the friends I saw at the wedding, you may have some familiarity with some areas of their life, so the questions may become more targeted.

 I answer a lot of questions about my 3 and a half year old daughter, because I am one of the only parents in our friend group. I am always more than  happy to talk about her. I also end up talking some about my health, because of course I am open about my struggles with chronic illness and my upcoming appointments and potential surgery. I do my best to be honest about that as well, as honesty and candidness are big things I pride myself on as an advocate for chronic illness: though it’s never nearly as fun as the little one’s antics. 

Sometimes, during these exchanges, I can’t help my mind from spinning and starting the comparisons. “They’re so much more successful than you,” my anxiety will try to say, trying to spin me into that negative thought trap and out of having a good time. “If only you were healthy and actually working full-time year round. Think about how much more you could accomplish.”

One’s 20s is a fragile time in life to fall into the comparison trap, no matter what their health is. But when you add chronic illness, it can feel like the playing field is more uneven: and make you feel like even more of a failure, if you let it. 

And comparison traps aren’t only present with chronically ill people being tempted to compare themselves to healthy people (or people they think are healthy: we never truly know everyone’s personal inner struggles). 

And it happens both ways. Chronically ill people can see someone who has an illness and doing awesome things with their life–advocating for the cause, working their dream job, heck, even just wearing jeans every day, and another chronically ill person wonders why they can’t do the same things. Sometimes, this unfortunately turns into jealousy and attacking other chronically ill people seen as “more successful” or even “faking it.”

 Often, I see this taking the form of internet commenters complaining about a celebrity or even just a normal writer who is able to hold down a full time job despite their illness. “Wouldn’t it be nice to work. I can’t even get out of bed thanks to my xyz illness.” At its most toxic, this turns into infighting in the chronic illness community, a chronically il dog chasing its own tail or, even worse, accusing others of “not being sick enough” to “truly” be chronically ill. 

And on the other side of this, those of us who are still working can feel like we aren’t ill enough, like we live every day as fakers, despite our daily pain and diagnosises, and that people are just waiting around every corner, waiting to call us out as the “not sick enough” frauds we are. Not sick enough to be chronically ill, not healthy enough to be successful; the comparison trap does its best to make you feel like a failure in whatever realm you dwell in. 

Something I try hard to remind myself, and that I am lucky to have wonderful people in my life reminding me, is that there is no place for the comparison trap: it’s worthless to compare one’s own journey to someone else’s. 

Everyone’s journey is different: and everyone’s journey is important. When we are chronically ill, our journeys might look slow, and our steps might seem small: but every day I remind myself that life is not a race. Progress is still progress. Just because I had to set aside some of my dreams, like self-publishing a novel, so I can focus on getting brain surgery doesn’t mean they aren’t going to happen. Just because my career doesn’t look like the trajectory I saw myself going on when I entered graduate school doesn’t mean it’s not a worthy, necessary job that touches lives of children every day and makes a difference in the world, while at the same time allowing me to be part time during the school year and focus on my health right now. 

I wrote a post a little while back about how my scripture reading habit has become essential to my self-care. In my daily scripture reading practice, I often go through seasons where I gravitate to certain characters or scriptures that help me in my current season, and end up reading every single different perspective I can on them.  

Right now, the Biblical character I’m really resonating with is Joseph–the one with the multicolored coat, not the husband of Mary. Joseph had big dreams: and big struggles. He went from being the favored son of his father to being thrown into a pit by his brothers, sold into slavery, thrown in jail: and eventually made a remarkable recovery to be the second in command in all of Egypt, saving his entire family in the process. 

But Joseph’s journey didn’t happen overnight. It took approximately 22 years for him to go from pit to his brothers bowing before him in the palace! 22 years of suffering is a long time…and while I don’t relate to the exact kinds of suffering Joseph went through, and can’t imagine the horrors, what I can relate to is holding suffering around in my body for years and years, clinging to hope, wondering if it’s still ok to dream when I feel like my body might give out on me at any minute. 

One of the best bible study plans I’ve tread about Joseph is The Joseph Challenge by Dr. Kanayo Dike-Oduah, available for free on the YouVersion Bible app. On the last day of the plan, Dr. Kanayo writes, “remember that your life is important. You are necessary. Your God-dream, God-vision, God-idea and purpose is what someone else needs.” We weren’t designed to be all the same. Chronic illness sucks, and I’m not one to say “everything happens for a reason,” because some things are just awful, pure and simple. Bit what I do believe is that God can take everything, even the crappiest things, and use them for God’s own glory. And I believe God gives dreams to everyone: healthy and ill and in between. 

The thing about dreams is that they take time, and everyone’s dream operates on a different timeline. Struggles don’t mean dreams won’t come true: in fact, if you look at most success stories, there is a great deal of struggle and pain in all of them. 

The only person I want to compare myself to is…myself. Am I at a different place, a better place, holistically, than I was a year ago? I can answer that question with a resounding yes. Sure, my symptoms are getting worse: but my symptoms do not define me. 

So much more has changed for the better. I made my resolution word for 2017 wellness, and we near the end of 2017, I am generally so much more well. I have better self-care practices and better self-esteem. I love my new job and new church. I spend more time with my daughter and husband. We are working towards medical answers and treatment, and I have accepted that my diagnosises are a part of me but don’t define me. I’m writing more and have a solid bible reading habit. I’ve cut out negative habits. All in all, that progress, progress that I am sure will continue, despite inevitable bumps on the road, is the only comparison I need.

Living Life Whilst Waiting for Medical Answers 

This post has sat, a quarter-written, in my drafts folder, for over a week now. It’s not the first time a blog post has languished, but it may be the first time that avoiding a post has scared me away from writing entirely. You see, I am in a season of waiting. Waiting for answers, waiting for comfort, waiting for surgery. Waiting for God. It is not a season I like, and it is not a season I, to be totally blunt, particularly want to write about. 

If I could, I would just neatly push the delete button on this draft, let time and life happen, let this season pass by at its excruciatingly slow pace, let the answers finally come, this season finally pass, and never write this post, so that there would never have to be a record of this, my very least favorite type of season. 

But, if you’re anything like me, this is the kind of post you probably need most, because this is probably the kind of season in your life you probably live–and dread–the most. 

My life as a chronically ill person who is simultaneously a lot of other things  (educator, mother, wife, family member, friend, church and community member, etc) involves living in a lot of in-between areas.

 In a previous post about chronic pain, I talked about how, if we all have a stoplight of pain–red meaning total, disabling pain that means we stop everything do, and green meaning nearly no pain–I spend most of my days on yellow. I am at “slow down”: clearly aware of my pain, but, with medication and solid coping strategies, able to go to work, parent my child, and spend time with family and friends. However, that pesky pain of mine is always a constant companion and reminder. 

Just like my days are spent in the yellow, in between zone of pain, much of my life is spent in another in-between zone that is less-than-pleasant: a waiting zone. There is no fast forward button. Unlike on a TV show or in a novel, most of my life takes place in the uninteresting bits. 

It’s crazy for me to think about, because it consumes so much of my life now, but last year at this time I didn’t even know I had Chiari Malformation or Ehlers-Danlos Syndrome. Life has changed in so many different ways since I got my diagnosises, but one thing that hasn’t changed is then, just like now, was a period that was fraught with the tension of waiting for medical answers. 

Most people with chronic illness know that the diagnosis process can be frustratingly slow. It can take months or even years to find out what is wrong with you. And sometimes, you can get an answer, and later find out it is the wrong answer (like what happened with me and being misdiagnosed with fibromyalgia.) 

Getting the right diagnostic labels was such a relief to me, but what I didn’t expect was that there would be new seasons of the same kind of nervous, anxious waiting once I knew what illnesses I had. No longer is the question “why do I have these horrible, crushing headaches and neurological symptoms?” the first one on my mind, sure. I know they’re owed to my Chiari malformation. 

But answers aren’t treatment. I have been waiting for months to get in to finally see a specialist to find out whether or not I will need brain surgery for my Chiari. 

One of the other difficult things is that one’s own acceptance journey and their medical red tape journey never seem to travel at the same speed. Chances are I would already have had the brain surgery now if it wouldn’t have been for my own anxiety and waffling over it. 

But now that I’ve finally accepted that I do most likely need surgery and that the risks are worth the potential rewards, since my symptoms are so severe and continually escalating, I have to wait for my treatment schedule to be on the same page as I am emotionally. Sure, if I would have booked these appointments and done all of the legwork earlier, I could have had the surgery now, when I was emotionally ready, but I wasn’t in the place of acceptance before to take those steps to get the treatment. So it’s a challenge for sure. 

I started drafting this post on a Wednesday, the day after I was released from an emergency room trip that yielded absolutely no answers. Today is Saturday, over a week later. The biggest thing that has happened in that time is that last Friday I finally was able to schedule an appointment to see a neurosurgeon specialist for my Chiari, three hours away. 

If this was a TV show, we would only see the highlights, and this whole 2 week period, from emergency room visit to specialist’s office, would be one episode. But this is real life, and there is life to be lived in the in-between, in the tension of not having answers or proper treatments or timelines. There are questions to be answered honestly when parents at your education job ask you how you’re doing and you have no new news to give them. There are frustrated prayers to pray when you cry out to God, begging for a little peace among the pain as you try to wait the best and most faithfully you can. 

I am looking forward to Wednesday, and the appointment with my neurosurgeon, an appointment that has taken months to schedule, like it’s Christmas. But I am nervous about it too. What if it goes badly? What if they can’t help me? Or won’t? What if it makes all of this feel like I’m back at square 1 with treating my Chiari? 

In the meantime, the best I can do is push the “what ifs” aside, pray a lot, trust God has a plan for all of this, lean on my support system, and try to remember that there is life to be lived in the wait. Unlike on a  TV show, in real life the little moments matter. Each job shift where I get another opportunity to impact a life of a child. Each night I get to snuggle up with my daughter. Each time I get to go out on a date with my husband. These times are precious, and they deserve to be treated as such, not consumed by the worries of living in the in between. 

So I wait, and I muster as much peace as God can possibly give me for the wait. The wait may be hard, but there is life–beautiful, full, worthwhile life–still to be found in it if one looks hard enough.

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. 

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.