Dealing with Seasonal Sickness as a Person with Chronic Illness

I am sick. Specifically, I have a cold. I’ve had it for about a week now, with no end in sight. It’s the type where I almost completely lost my voice, am hacking up copious amounts of phlegm, and should probably just have my paycheck direct deposited at CVS due to the incredible amounts of cold medicine I’m purchasing. 

I am also ill. Specifically, I have Ehlers Danlos Syndrome Hypermobility Type, Mass cell activation syndrome, and Chiari Malformation.

Because of my chronic invisible illness conditions, having a cold isn’t just having a cold. The Mighty has an excellent video about the difference between someone who is sick and someone who is chronically ill. Watch it here. It’s even more complex–and the difference even more glaring–when someone who is chronically ill gets sick.  

Take the fatigue. Both of my chronic illnesses come with the fun side effect of often crushing fatigue. I’m slowly learning tricks of how to manage it, through good diet and nutritional supplements. Doesn’t take away my fatigue, but does make it manageable. 

But I get a cold, and all the good from that management goes out the window. All my body wants to do is rest: not just the normal rest it always craves, but on top of that, rest to try and fight off this cold. I am double exhausted. 

But I can’t just sleep all the time. I am determined to be stronger than my chronic illness (while still taking the necessary self care steps so I can triumph over it long term: a really hard balance!). Have you seen the DayQuil “No Such Thing as a Sick Day” ads, where the mom or dad walks into their baby’s room and tells the baby they’re taking a sick day? Tagline: “Moms/dads don’t take sick days.” 

Well, that’s just it: I am a mom, and want to be as present as possible in my daughter’s life. I’m also a working mom. My job is more than just a job to me: it is my calling, my passion, and so I am dedicated to showing up there, even on the hard days (as long as I’m not super contagious!). 

So what happens is that my life becomes sleep, medicate, work, kid, medicate, sleep. There is no time or energy for anything else. We are talking full-on survival mode. 

And then there’s the pain. Oh, the pain. 

Because of my faulty collagen, I often get chest wall pain and inflammation, also called costochondritis. Now I have a cold that almost immediately moved into my chest. But it’s not just those two pains on top of each other, because the cold actually makes the inflammation and chest wall pain itself worse, so it’s double that pain plus a distinctive pain from the cold. 

It also means I seem to injure a lot easier. My legs and hips have even more bruises than normal from things as simple as playing with my daughter. I feel so fragile. And subluxations happen a lot easier too. I subluxed both my shoulder and one of my hips this weekend, even though I was in bed for much of it!

All of this leads to the painsomnia: insomnia caused by pain. I’m exhausted (see above), but can’t sleep because of the pain. What a vicious cycle!

It also seems to take forever for me to get better. When my husband and I get the same cold, his is done in half the time and is much less severe: but he is not chronically ill. 

 Eventually, even though it doesn’t seem like it here in the thick of it, my cold will go away. My chronic illnesses, however, are here to stay. This reality can be very hard for me to think about sometimes. 

The positive side is part of what I’m feeling will definitely get better.  The cold going away means I’ll return to the “normal” of my regular chronic illness management. I won’t just be in survival mode. I’ll still have fatigue, but lesser. I’ll feel more like thriving than surviving. 

But…there’s also always the reality that I will never get fully, or really even more than half, better. The cold will leave, but chronic illness is here to stay. 

I am lucky, though. I have other things that won’t go away like seasonal sickness: namely, an incredible support system. My husband is my rock. He takes on extra daily just with my chronic illness, and so much more when I’m sick on top of it. I try to express my gratefulness as much as I can. I have amazing family and friends, both near and far. I have people I can always complain to who always are empathetic and here for me. I know many do not have this kind of support system, and I try my best never to take it for granted. 

I also have a job I love. When I am there, I don’t feel sick most of the time, because I am in my element, doing work I am passionate about. 

And I also have my daughter. She brings so much sunshine to my life, and I wouldn’t trade getting to be her mama for anything. 

So is being chronically ill and seasonally sick at the same time a very significant challenge on my life? You bet it is! At the same time, I know that I have a strong support system, hot tea, a great job, a beautiful daughter, and my faith that keep me pressing through daily: even on those “survival mode” days. 

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I’m a Zebraffe: Labels on My Wellness Journey 

This blog is intended to talk about my life as a writer, yes, but my writing fits into a whole life as a person that is way more complex than just my writing. And that all, in turn, informs my writing. One area that informs all of my life, of course, is my health. This blog has alluded to my struggle with chronic illness, but this is the first post where I’m really going more in depth and talking a little bit about my chronic conditions, and my recent journey to those labels. 

The image above explains why the zebra came to be the mascot of the specific chronic condition I was recently diagnosed with, Ehlers-Danlos Syndrome. I specifically have the most common type, the Hyper Mobility Type. More broadly, a “medical zebra”, which I am also, is someone who frequently baffles medical professionals, bouncing from professional to professional for years often without a correct diagnosis. 

Ehlers Danlos Syndrome is a collection of disorders of the connective tissues and collagens in one’s body. An excellent overview can be found here on The Zebra Mom blog. My favorite part is how she would describe this disorder to her seven year old child:

A carpenter makes a wooden chair. Instead of using wood glue to place the joints of the chair together, he uses chewing gum. Once finished, the chair looks fine. But, as time goes by and the chair is used, the chewing gum doesn’t work very well at keeping the joints together. Without proper glue the chair can begin to get wobbly.”

Definitely go to the link and read more about this condition and the chronic pain it causes: it describes more than I ever could.

I have never been a particularly healthy kid. I started getting migraines in second or third grade. I remember saying I had one once as a child, and being accused by a classmate as faking, because it was something her mom got and “kids don’t get migraines.” I sprained my ankles extremely frequently. I got small injuries–bruises, sprains–in gym class nearly every week. I was usually written off as unathletic, not in pain. 

In eighth grade, I started showing more concerning symptoms. It’s when I started blacking out when I stood and getting fainting spells. After a severe fainting incident, they performed an MRI, and I was diagnosed with Chiari Malformation. 

Chiari Malformation, according to the Mayo Clinic, is a condition where one’s brain tissue extends too far into their spinal canal. 

Since EDS gets its own animal mascot, the Zebra, fantastic Chiari advocate Amanda Johnson found one for Chiari: the Giraffe! She chose giraffes both for their long necks, and because in Ancient Egyptian art they were depicted as great power in strength, “just like a Chiarian is every day.”


The crazy thing is, I didn’t remember my Chiari diagnosis. I’m not sure why. I was only twelve, and perhaps it was so traumatic I blocked it out of my mind. But fast forward to early December 2016. I’d had a severe migraine for a week and a half and was beginning to feel really helpless about it. I was talking about the migraines to my mom, and we had approximately this exchange:

Mom: You haven’t really had problems with migraines for this long before have you?

Me: Yes I did, in 8th grade. It’s why I had to quit band. 

Mom: Oh yeah, but that was because of the Chiari. 

The Chiari!? I had heard the term recently in chronic illness support groups  but I didn’t remember having it! Turns out that, yep, as a preteen I had totally blocked the diagnosis out, but I had seen several specialists and even a neurosurgeon, but that my parents decided against surgery because the herniation did not seem to be severely affecting cerebral fluid flow, and my brain was still young and developing and they hoped symptoms could be managed through medication and quitting strenuous activities like carrying a fifty pound tuba in band (*note: I actually do not remember how much a tuba weighs. I did not play for long). 

Having the Chiari piece back in place made all the difference, turns out. Chiari is often a comorbidity of Ehlers Danlos Syndrome. I was evaluated for and diagnosed with HEDS, replacing my fibromyalgia diagnosis. 

A Zebraffe, coined by Amanda Johnson, fellow Chiarian and administrator of Chiari Sisters facebook group 

Since receiving both seemingly-correct diagnosises, I am feeling a lot more hopeful. I mean  it’s weird: not much has changed. Both Chiari and EDS are lifelong conditions for which there are no cure. But finally, my symptoms, problems, and medical history seem to fit together like a puzzle, and I’m working towards a team that can best help me manage my conditions. I’m also reading a lot about both  and joining support groups, which have made all the difference in helping me have hope going forwards. 

I also, of course, credit my faith and amazing human support system God has given me. My conditions may be daunting, but my God is so much bigger. 

So there you have it: my two chronic illness conditions in a tiny nutshell. As this year of wellness continues, I will keep talking about them and their management, and how they coexist with my writing and other areas of my world for a complicated, but very full, life, for which, despite its struggles, I am endlessly thankful for. 

A Letter to My Daughter on her 3rd Birthday 

Today is my sweet daughter’s third birthday. What a crazy, beautiful milestone! In some ways, at only 25 myself, I can barely believe I have been a parent for three years. Ever since I knew I was pregnant, and moreso when I found out she was a girl and she became really real to me, this girl has been my heart, and the tied-for-first (with my husband) most important human person (excluding Jesus, who always comes first) in my life. 

My little girl turning three fills me with so many feelings. In many ways, she’s not a baby anymore, but I still see so much baby in her. At the same time, I see so much possibility and promise of the child and adult this amazing, beloved-by-God little girl is going to be 

There’s fear there too. What if she inherits my chronic pain and illnesses? What is going to come as she gets older that I can’t protect her from?

With all those thoughts swirling around, here is a hypothetical (she cannot yet read or understand the concepts laid out here) letter to my dear daughter on her third birthday. 

Dear beloved little one,

You’re finally three! On one hand, I can’t believe it. How is my little baby so big?

I thank God everyday for giving Ethan and I the gift that is you. You, our little honeymoon baby, were such a blessing. Before that fateful day in late May when two pregnancy tests confirmed my worried suspicions–yup, there’s a second line, clear as day–I had my life all planned out. It was going to be at least five years before we had you. We were going to be settled, both graduated from school, likely back in Michigan, probably buying a house. 

Oh, how God sees human plans and laughs!

You have filled my life with a purpose and joy and beauty I never thought I’d experience, especially this young. You are my sunshine on a cloudy day. I thank God for you everyday. You are better and brighter and more special than any of my life plans without God could have possibly been. 

I worry, too. I think that’s a normal mom thing, worrying about their babies.It’s not your fault, beautiful. It’s just a side effect of how much I love you. I don’t know what your future holds, darling girl, but I know there will be pain and heartache. That, my dear, is just a side effect of life, I’m afraid. 

And I worry about your little body. You are so vibrant and so active, it’s hard for your mama to keep up with you sometimes! I do the very best I can. When you fall down a lot, often on purpose, silly girl, and bruise easily, I can’t help but fear that you will inherit my Ehlers-Danlos Syndrome and possibly my Chiari malformation, and have to live everyday with the struggles of chronic pain that your mama does. Oh, I would do anything to save you from that fate! 

But, what I do know is, whether you inherit my disabilities or not, whether you’re in and out of doctors a ton as a kid like I was, whether you have to give up passions, like band, like I did, you are going to be okay  kid. You know how I know that? Because your mama went through them, and she’s okay. I’m okay because I had an incredible support system, and parents, and friends, and most importantly, a God, who loved me endlessly. 

And little one, good news: you are just as beloved! You are surrounded by a community that adores you! You have a mama and daddy who think the world of you and are so committed to being there for you. No matter what happens, sweet girl, what challenges you face, please, keep coming to your mama. I love you endlessly, and it will always be OK. 

But I know I and your daddy and your grandparents and all your aunts and uncles, both biological and related through love, we are human. We are going to mess up. You are likely going to say you hate me and can’t wait to go off to college, just like I said to my poor parents. But through all of that, you are beloved by a perfect God. The number one thing I hope to instill in you, my dear daughter, my heart, is how dearly God loves you. Because that is the truth that will carry you through life. 

I hope three is a magical year for you, filled with learning and growing and the joys of childhood. I am so glad I get to be with you through it. You are such joy. And so, so loved. Always. 

Your mommy,

Kat

Panic Cat Back Cover Blurb (Work in Progress)

​Hello readers following my adventure!

I thought it was high time to share something specifically about my book, so yesterday I wrote a draft of a back cover blurb. This gives you a very small idea of what the book is about. Enjoy!

You never forget your first panic attack…
Within twenty four hours, Cat became the victim of attempted assault, had her first panic attack, lost her boyfriend, and ended up in the emergency room. 

Six years later, panic disorder has become a regular part of Cat’s life, kept mainly under wraps thanks to a strong support system headed up by her grandfather.  But when she receives traumatic news, Cat has a panic attack like never before: accompanied by a vision of a man being murdered by a shadowy figure that has haunted Cat’s nightmares for years. She soon finds out the man she saw in her vision was really murdered, exactly as she saw. 

Cat reluctantly keeps her plan of going on a graduate school trip to Israel a week after her sudden loss. But when she has another panic attack–and sees another murder–it becomes clear it will be no ordinary trip. 

With the help of a new friend,  Cat begins the journey of trying to help figure out who the shadow is: and finds power in herself she never thought possible. 

I am excited to share this blurb with you and give you a taste of the project I’ve been pouring my heart and soul into, and will continue to pour into throughout this year and beyond (and hopefully into future sequels, too!). 

My Inspirational Word for 2017: Wellness 

Part of my journey to self-publish Panic Cat in 2017 is part of a bigger journey towards living life bravely as the person I feel God has called me to be in 2017 and beyond. So part of talking about the process of pursuing the lifelong dream of novel publication will be talking about the larger process of trying to live well. 

Like the term “self care”, having a “word of the year” was something I didn’t hear of until I heard it everywhere. I heard some rumblings of the idea of picking one word, kind of like a simple resolution or mantra, to carry you through your year, sometime in 2016, but too late for me to really put stock into picking my own word. Late in 2016 going into 2017, however, it seemed like everyone I knew was talking about this idea: which is great, because I really think it’s a good one. Instead of resolutions, which are much easier to feel bad and guilty about breaking than they are to actually keep, especially for people with chronic illnesses of any kind, a word of the year can be energizing. It’s about changing ones mindset, and can be anything that’s meaningful to you–from hope to love to power and way beyond. 

Well, I had my word for 2017 picked before the leaves even began to change in 2016! In mid October 2016, I decided (well-meaningly, but with not nearly enough prayer or thoughtfulness, or, really, grace for myself) that 2017 would be The Year of Health. I was finally going to take the necessary time to process my fibromyalgia diagnosis that I had received in July and do everything I could in my power to start feeling better. After all, I totally could get healthy on my own, right? That was totally something I could control (note heavily laden sarcasm). 

Well, if the foreshadowing in the last paragraph was any clue, those early attempts to get a head start on my 2017 “year of health” failed dramatically. 

So it’s the first day of 2017, I just got done with a long and draining but rewarding morning at work and afternoon parenting, and my daughter is asleep and I’m finally taking the chance to breath. I get on Facebook, and one of my friends has asked people what their word of the year is. 

There were some excellent ideas there–possibility, rise, Nutella–but all I could do is feel like a failure already, since it was only the first day of 2017 and I had already “failed” at my word. 

And then, out of nowhere, as if it was bubbling up from within me–from God, I’m sure, came another word: similar, but, for my particular year ahead and place I am at this beginning of 2017, much better. There it was, so obvious: my word of 2017 is wellness. 

What does wellness mean, exactly, and how is it differentiated from health: why is it so important to me that I chose one word over the other? 

The words are often used interchangeably, and can mean different things to different people. But to me, the difference is that good health generally means “free of illness and diseases.” I view wellness more holistically: what is the state of the whole person? Are they doing their best on any particular day? Leaning on their support systems, families, and friends? Practicing good self care practices? Being kind and patient to and with themselves and others? Taking small, consistent, steady steps towards progress in any area if their life they have control over? That, to me, is wellness, and I realized that while I could definitely meet my health goals within the wellness mantra, it was so much more encompassing and allowed so much more self-grace that really all people–not at all limited to those with chronic illnesses–desperately need.

The other big reason wellness seemed like the clear fit to guide my 2017 is because wellness, unlike health, is something I can always achieve. Despite outward circumstances, or sickness, or problems, it can still be well with my soul. The words to one of my favorite hymns, “It is Well With My Soul,” which I haven’t sung in years, suddenly sprung to mind as quickly as my 2017 word. 

When peace like a river attendeth  my way, when sorrow like sea billows rolls, whatever my lot Thou hast taught me to say it is well, it is well with my soul. 

It is well with my soul. But is it? In today’s society, full of hustle and bustle and mayhem, how often do we stop and check the wellness of our own souls? 

I cannot control how healthy I am, not completely, whether it’s physical or mental health. I can try my best to eat healthy, to get enough sleep, to see my doctors regularly, to take all my medications, to get light exercise, to stay informed on my conditions. Those are all incredibly important things to do, and I’m not discounting them at all. 

But with chronic illness, I can do all those things, even make myself crazy fastidiously adhering to my practices of making sure I do all those things, and I can still be unhealthy. With my low immune system, I can still get sick even if I’m doing everything to attempt not to. 

But wellness, unlike health,  is more about perspective. I’m not saying that perspective cures everything: mental health is just as important as physical health, and perspective alone does not change mental health issues. But what wellness does mean is looking more at the big picture: at everything you can do, rather than can’t, and at who you are, rather than your limitations. And taking the knowledge that you are important, strong, and beloved, and using it to take small steps towards being well, not just necessarily healthy. Steps that, yes, might be exercise and diet and keeping doctors appointments. But they might be self care; setting limits; doing things that feed your soul; getting people to help you and remembering you’re never alone; breaking things into small, doable chunks. There are as many ways to be well as there are people,  and I am determined to find my own way to be well (with God and my support system’s help, of course!) in this new year. 

Go well into 2017, and I hope you can find one thing today, however small, that brings wellness to your life. I know I’m trying to.