3 Tips for Surviving a Flare--Guest Post for Chronically Whole

Flare-ups are a regular and unfortunate part of living with an autoimmune disease. They LOVE to come right when we are busiest, invading our days with pain and dizziness where there was no room for such miseries. I’m experiencing one currently, as often happens when I am due for my next chemotherapy infusion (Remicade every four weeks, totally worth it!).

@@Flare-ups are a great occasion to practice self-care. http://chronicallywhole.com/?p=759 via @chronicallyw@@

Actually, flare-ups pretty much force us into caring for ourselves, and if we don't we usually end up feeling worse. When we choose self-care from the beginning, we can reduce the amount of emotional distress that so often comes along with our flares. Here are three of my go-to tips for surviving a flare:

I'm guest blogging over at Chronically Whole today. Read the rest of this post there!


(Recycled from August 2015)

Sometimes chronic illness just stinks.

I'm sitting at the doctor's office, the place I'm more familiar with than anyone should be. All week I've been fighting an infection, and I kept telling myself that this was normal. Just a normal part of my life on two forms of chemotherapy.

But on the way here it hit me that this just really stinks. And, no, it's not normal.

When your dog has an accident all over your floor, and you're almost too exhausted and dizzy to clean it up. But you do it anyway. When you can't make it through yoga without leaving because you're joints are just too immobile that day. When you spend all your energy on work and then are unable to sleep from all the coughing. These things are inconveniences, but they are also losses.

There is a slow current of loss in my life. My soul feels stronger than ever--alive, bright, and luminous. But my body--it's a whole different matter. Yesterday after a fantastic consulting meeting with my pastor I asked my husband what he thought I'd be doing now if I had never gotten sick. Now that's a dangerous question...

The truth is that without sickness I honestly would have achieved so much more by now. It's either sad or amusing that I'm a high-capacity woman in a low-capacity body; so I choose to be amused most the time. But you know what's even more true? While sickness has made the quantity of my achievements lower, it has made the quality of my voice stronger. 

The current of loss in my life leads me to places I would have never gone without getting sick. My life has immeasurable impact in the little things and bearing the losses of convenience, opportunity, and physical freedom drive that impact.

Today, when life is hard, frustrating, and literally messy, when everyone else is at work and I'm in bed, I tell myself that the ugliness of today is creating a strength and beauty that won't come from any other stream. Dear friends, who with me are so desperately sick of being sick, take heart--our stinky, infection-ridden days are making us women and men of unconquerable courage. The chronic illness life is a life of holding the tension between acknowledging pain and finding meaning. Some days we can hold that rope better than others. And if you can't hold the tension today, then know that the author of all good things can hold it for you. In him, the disappointing weight of being sick and extremely capable in mind and heart finds a resting place. Today, when being sick just stinks, I can remember that I am loved for who I am at my core, not for what I can do, and living in that love lies my greatest accomplishment and biggest impact. 

Today, when it just stinks, remember, you really are loved.


This piece has been republished over at The Huffington Post.

Developing and managing a second disease requires bravery.

This past Fall I felt sicker than I have ever been in my life. Fatigue covered my days like heavy fog. Nausea haunted me, and I found myself vomiting a couple days a week for no good reason. I forced myself to go to class and see my therapy clients, but otherwise spent the rest of my waking hours in bed.

It was such a confusing season, largely because fatigue is a big part of my autoimmune disease (Ankylosing Spondylitis). I'm used to debilitating fatigue, but this was worse. Oddly, my joints weren't hurting, and usually my fatigue corresponds with intense joint pain. When I start to feel sick, my first thought is that I am in a flare-up of my disease. It's usually that simple. When something new hurts--like my eye--I figure, AS can affect that too. (Don't worry, I see a doctor when odd pains crop up!) When that's not the cause, I start thinking I've caught an infection or a virus, because being on multiple immunosuppressant drug therapies definitely makes me very susceptible to infections. But it wasn't that.

Days of nausea and fatigue turned to weeks. And then weeks turned to months. And after every doctor visit and each new medical test, I had no answers. In those months I began to feel sad. Really sad. A heaviness veiled my normally happy disposition. As a counselor, I knew I was experiencing symptoms of depression. But being sick with no answers is inherently depressing, so I figured that was why.

My rheumatologist faithfully searched out the cause of my mystery illness, determined to see me well. Both her instincts and mine told us this was not AS, and likely not rheumatologic. And when blood tests, CT scans, and biopsies came back normal, she tested one more thing. "It's a far-off chance that it's this, and I've never seen it in my entire career, but let's check it anyway," she said.

The day she called with my test results, I was fully expecting to hear the results were, again, normal. The undiagnosed but very sick know that normal test results are often the worst news to receive. Abnormal or positive test results mean answers, mean help, mean life can get better than the hell you are living. Almost no one understands why getting bad test results is such good news except the determined and courageous patients who have not given up on fighting for answers to the cause of their illnesses. But that day, I got the beginning of an answer.

My doctor informed me that during my cosyntropin stimulation test, my adrenal glands produced virtually no cortisol, which meant that I had Adrenal Insufficiency. In the onslaught of google research that commenced after that I learned that all the things I had been experiencing, including depression, were symptoms. I needed to start steroid therapy to replace the cortisol my body wasn't able to make. Hydocortisone made my life immensely better in the span of about two weeks. But managing my new condition has not entirely stabilized, and we still are determining the cause of my Secondary Adrenal Insufficiency.

Developing an additional condition has meant seeing more doctors, specifically an Endocrinologist, having even more regular blood work, and sucking up the fact that I'm dependent on steroids daily to function. (Really, to live. Without steroids, Adrenal Insufficiency patients can go into life-threatening adrenal crisis.) 

Me on the right, with my extra round steroid-face and a genuine smile. With Bess, who also writes for  Anchor for the Soul .

Me on the right, with my extra round steroid-face and a genuine smile. With Bess, who also writes for Anchor for the Soul.

Developing and managing a second disease requires bravery. About 25 percent of autoimmune patients have a tendency to develop additional autoimmune diseases. (Via Maedica) And that's not counting co-morbid medical conditions outside of autoimmune disease that can occur, like mine. The reality is, many of us have or will develop a second diagnosis. And that diagnosis will bring new challenges and opportunities to process, grieve, and hope for the better life we all want. Six months after learning about my new condition, this is what I have learned:

1. Listen to Your Body. When we are attuned to our bodies, we often can know when something is off physically. Trusting your internal sense that something is off can enable you to be persistent to get the care you need.

2. Value Your Health. The fear of not getting answers and being judged as a complainer or drug-seeker can keep us from pursuing medical care. If you experiencing new, unexplainable and frustrating symptoms, value yourself enough to do the frustrating and scary work of seeing your doctor(s). 

3. Let Yourself Grieve. Giving yourself the space to grieve your illnesses is not a pity-party. Even though you are used to being sick, it's a blow to find out that one more thing is wrong with your body. Let yourself cry about it. Talk to a friend. Go back to see your counselor. (That's what I did.) 

Bravely giving ourselves the space to listen to our bodies, value our health and existence, and grieve the assaults to that existence empowers us to find joy in pain, energy in fatigue, and stability in sickness. Whether you have one diagnosis, or two, or five, I hope you'll be brave and value yourself today.

An open letter to the first doctor who invalidated my pain

I met you when I was 20 years old. Scared, worried, and in the worst pain I had ever experienced, I held the tiny seed of hope that doctors would be able to help my pain become past tense. You were just a first year resident on your rheumatology rotation at the University of Michigan hospital, responsible for doing my initial examination before the real rheumatologist came in. I don't know anything about your life, your own experiences with physical pain, or the training you received before you treated me. All I have to judge you by is that visit and how you treated me. 

When you came into the exam room you quickly told me that all of my bloodwork had come back normal with no signs of inflammation. My experience since meeting you has taught me that when medical tests do not readily reveal the source of pain, doctors can be apt to judge one's pain as psychosomatic. But I didn't know that then. I just thought doctors were supposed to help.

You didn't listen when I shared how much pain I was in and what exactly hurt. You just pressed on various points on my body asking if they were tender and shared that you felt I probably had Fibromyalgia. You didn't hear that I was not in muscle pain and that none of the "tender points" felt tender. I can't say what you saw when you looked at me, but it certainly felt like you didn't see me. I don't think you saw the otherwise extremely healthy 20 year old college junior who up until a few weeks beforehand had spent most of her free time rock climbing, running, and playing soccer. I can't say I know what you were thinking about me, but your curtness made me feel like nothing more than an inconvenience. 

But I'm a fighter with a researcher's heart and mind. I had already read countless articles in the weeks I had been sick, searching for answers to my joint pain. I knew Fibromyalgia wasn't it. And I knew you weren't really listening to me. 

But now, 7 years later I want to thank you. Yes, thank you. Your invalidation of my pain helped me begin validating myself. To get help I had to trust my intuition. I had to trust my inner knowledge that something was profoundly wrong in my body, even when you didn't fully believe me. Your trivialization of my pain set me on a trajectory of learning how to honor my body and all of the emotions that surround being sick. Your invalidation taught me that minimizing my pain is not ok. And for that, I am forever grateful. 

Sincerely,

Katie Jo Ramsey

P.S. You were wrong. I have Ankylosing Spondylitis, a disease which often shows up as normal on blood tests. Arthritis Research UK estimates that only 30–40% of people with ankylosing spondylitis have inflammation that can be picked up in a blood test, making it all the more important for patients like me to trust their symptoms and fight to be heard.

Getting my Remicade infusion last year (Due for another tomorrow, thank God! Flaring while I wait for it...)

Getting my Remicade infusion last year (Due for another tomorrow, thank God! Flaring while I wait for it...)

This blog was also published at The Mighty, a community of storytellers facing disease, disability, and mental illness together. See it here!

I am Fearfully and Wonderfully Made

I am fearfully and wonderfully made. This has been my mantra this week, a truth I have both relished in and at times been frustrated to believe. I'm just over a month into my diet overhaul, a process that has been hard and somewhat helpful. After several months of feeling very crappy, it was time to refocus on getting healthy. It's still a sobering thought that I needed to stop taking classes in order to get healthier, that I'm sick enough that I really need the diet and lifestyle changes I'm making. There have been a few days during the past month that this reality has been absolutely frustrating. Why can't I just do and eat whatever I want? Knowing I'm fearfully and wonderfully made and also knowing that my body is often full of inflammation is sometimes a confusing tension for my heart to hold.

A few weeks ago I started going back to yoga classes at a studio a few blocks away from our apartment (Kindness Yoga). It has been [overall!] a life-giving experience to be back on the mat. I have done yoga on and off for about 4 years, and every time I start practicing again after a long "time off" I know that there will frustrations and challenges as my joints readjust to the movement and flow of yoga. Part of it is plain and simple being out of shape. But the most challenging part is the pain and stiffness in my spine, wrists, shoulders, and feet as I push to hold the various poses. Going to classes not knowing what your body will be able to handle and pressing into discomfort is not for the faint of heart. Several times during the past few weeks I've thought to myself that going back to yoga is an exercise in courage.

One of the things I love the most about yoga is that it is a mental and physical workout. Lately, yoga truly has been helping me hold the truth that I am fearfully and wonderfully made. As I stretch and move I am simultaneously appreciating what my body can do and facing its limits. Facing physical limits is difficult. Yesterday I felt like a total badass in my yoga class, as I was able to hold every pose with strength and today I battled frustration as my spine and shoulders screamed at the effort of the endless backbends and heart openers the teacher kept leading us in. One day last week I had to leave class halfway through because my joints were hurting so much I was in tears from the sheer pain. Every day my levels of stiffness and ability are different, and I have to be open to what my body needs in each day.

Doing the hard work of caring for my body is a spiritual endeavor. For me, going to yoga is choosing to honor God and the body he gave me. For me, yoga is prayer. It's a humbling expression of my heart's desire for healing and a conversation with both myself and God about the tension of a broken body. My yoga practice is a space where I have to face my heartbreak, frustration, and pride, and where I get to exult in the joy of being human. As I bow in Namaste to my teacher at the end of the class I am honoring the light of God in her, myself, and the others in my class--humans, made in the image of a mysterious, enthralling God. 

Friend, if you are dealing with a disease like me or maybe mental health issues that feel like they are holding you back or overshadowing your purpose, listen: You really are fearfully and wonderfully made. The effort it takes for you to take care of you is worth the pain. You will feel the truth of your purpose and inner beauty again, even if you can't right now.

In the meantime, join me in the courageous work of self-care. It could mean yoga class, starting to see a counselor, or simply meeting a friend for coffee to share how you really are. Whatever it is, as you do it, smile at the fact that you are courageous...because you are fearfully and wonderfully made.

Limits

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I have a history of being hard on myself. I am a recovering perfectionist, sometimes still unable to feel the freedom to make mistakes. Throughout my life, I have pushed myself beyond my limits and/or denied them in order to be “perfect”. I don’t like admitting I have limits, and for most of my life have tried to ignore them.

It was freeing the first time someone told me that I could set boundaries and it was okay to have limits. It took being in a room with a counselor for me to be okay with not being perfect. I began to view my limits as gifts. Gifts from God that illustrate to me who I am and that I am made perfect through Him NOT my own actions.

After realizing God gave me limits, for His good, I have tried to learn how to apply them. In relationships with others it was very difficult for me to set limits and boundaries, but even more difficult is learning how to respect my limits within myself. Even trickier has been accepting that it is okay that I have limits in my day-to-day life, and these limits do not make me unacceptable to God or anyone else.

Today was a big step in this direction for me. I dropped a class. At first many of you might think, “What is the big deal with that?” or your reaction might be like my internal one: “YOU DROPPED A CLASS?!?” I am guessing most of you are thinking the first option.

I am in grad school for the second time in my life. I have my MAT (masters of arts in teaching) and now I am adding a MA in Clinical Counseling. This is the first time in my undergraduate and graduate career that I have dropped a class.  I have always pushed myself. In these situations, my negative self talk says: “Get over it, life is suppose to be this difficult”. I am always comparing myself to what I believe is perfect. Perfect is not what I need.  Dropping this class is not going to make my life a breeze, but it is going to give me room to breath.

The truth is, I need time to breath this semester. I need time to make room for things like focusing on my clients, spending time with my husband, being involved with Church, and doing things I enjoy. I need to have a life outside of school and work, and today I took a step in that direction. For this reason, today marked a sign of growth in my life. I gave myself room to breath and didn’t push past my limits.

Do you ever give your self room to breath and to enjoy life? Have you forgotten the things you once enjoyed? What can you do in your day-to-day routine to make room for yourself? Has God been pushing you to change your schedule in ways that might not be how you planned, but makes more room for him?

Furthermore, are you living day-to-day filled with anxiety and/or depression? I challenge you to go to counseling. Counseling will help you with those things, of course, but it will also help you to learn who you are and what your needs are. Counseling will result in some freedom from these conditions. My hope is that counseling will lead you to becoming more of your whole self, as it has for me.

Today as I reflected, I was challenged to make more room in my life for myself, others and for God. To live more according to what Calvin states in his book Institutes of the Christian Religion:

“Nearly all the wisdom we possess, that is to say, true and sound wisdom, consists of two parts: the knowledge of God and of ourselves.”

We cannot make time for knowing God or ourselves unless we have room to breathe in our schedule.

How does this quote challenge you?

What does it look like for you to have room to breathe?

-Bess

When Pain Makes You Feel Joy--capturing the small opportunities.

This morning has been rough for me physically. Every day I experience "morning stiffness" upon waking up, and some days the stiffness just doesn't go away. Today I had an 8am class, so it was pretty painful to make it to school and sit in a non-padded chair through the three hour lecture. I never know when my morning stiffness is going to last all day, so I often push past the pain and try not to dwell on it, thinking it will likely subside soon. But sometimes it lingers, and the pain can be so intense that it brings small tears to my eyes. Not necessarily because I'm overwhelmingly sad, but because it really hurts. 

Being in intense pain while listening to a lecture is hard work. And I realized this morning that when I recognize the truth that I am sacrificing my personal comfort for the sake of learning to better help others feel the comfort and hope of God's coming Kingdom, great joy enters into my present experience of pain. Though it's sometimes healthier for me to stay home, there are times when I can push through pain. But in either way that I cope, it is imperative that I stay mindful of my experience. When I am mindful in the moment of the fact that it is truly difficult to be a student with chronic pain, I am presented with an opportunity to respect myself and revel in the calling God has put on my life. It's a godward moment, a space in my heart to submit my experience of pain to God knowing that he wants to use it for the good of others. Small moments like these when I'm wincing in pain are sometimes sacred spaces where sadness over my authentically hard experience mingles with the joy of knowing God is working to redeem pain in all its forms--and that I get to help others know this coming redemption. It is by no means an invalidation of my sadness but rather an active and mindful experience of it in the presence of a God who cares about it intimately.

So as I sit here typing and feeling rather woozy, I am smiling inside even as I wince and close my eyes at the world that's beginning to spin around me because of the pain. But I write even now because I so want you to know that joy can enter into our sadness when we let ourselves experience it. It doesn't always. It won't always come. And we don't have to dutifully force ourselves to feel it. But it can come. And It will. I truly believe that a gift of suffering with chronic pain is that through it God often enlarges our capacity to feel joy. You might feel like that is the farthest thing from the truth right now, and I respect you for feeling that. I've felt that way too. But I also long for you to know and experience the truth that God deeply cares about your pain, so much so that he sent his  Son to live in a broken human body, experiencing the worst physical pain imaginable in addition to the existential weight of your and my angst, so that he could redeem it and banish it from the world forever. Jesus knows my pain and your pain and he conquered it. When he comes again, our pain will end forever. And in the meantime, the very Spirit that raised Jesus from the dead can live in our hearts, tenderly helping us face our pain and find joy in and despite it

And that's part of the beauty of these sacred, pain-filled moments--they exist because the Spirit of God lives in me. My pain-filled moments can be invaded by joy because they are an opportunity to commune with the Living God. This is somewhat heady, existential stuff, but it's also the stuff that faith is made of. So, if you have the mental energy, wrestle with it, wrestle with me and with God by reflecting on the following verses:

Jesus...”made himself nothing, taking the form of a servant, being born in the likeness of men. And being found in human form he humbled himself by becoming obedient even to the point of death, even death on a cross.”
— Philippians 2:7-8
“...I count everything as loss because of the surpassing worth of knowing Christ Jesus my Lord. For his sake I have suffered the loss of all things and count them as rubbish, in order that I may gain Christ and be found in him...that I may know him and THE POWER OF HIS RESURRECTION, and may share in his sufferings...[that] I may attain the resurrection from the dead.”
— Philippians 3:8-9a, 10a, 11b
Therefore, my beloved brothers (and sisters), be steadfast, immovable, always abounding in the work of the Lord, knowing that
IN the Lord YOUR LABOR IS NOT IN VAIN.”
— 1 Corinthians 15: 58

In the Lord our laboring in these small, pain-filled moments is not in vain. Sometimes pain can make us feel joy, because in it we can know the suffering love of Jesus and the real power of his resurrection. And, friends, there is no greater joy than beholding the love of God in Christ.

30 Things You May Not Know About My Invisible Illness

Invisible Illness Awareness Week is coming up--September 28-October 4, 2015. So in preparation, I thought I would participate in the Invisible Awareness Meme Project. Here are a few things you may not know about my invisible illness and what life is like with it.

1. The illness I live with is: Ankylosing Spondylitis, but you can just call it "AS," because that's much less of a tongue-twister.
2. I was diagnosed with it in the year: That's a hard question.  My AS diagnosis came slowly over the course of a few years, after being diagnosed more generally with "seronegative polyarthritis" and then "seronegative spondylitis."
3. But I had symptoms since: I first "got sick" in 2009 as a 20 year old and junior in college. It happened very suddenly and intensely, almost overnight.
4. The biggest adjustment I’ve had to make is: mentally adjusting my expectations for myself and my life
5. Most people assume: that I am not "sick" or in as much pain as I am as often as I am. But, since it's an assumption, I don't really know!
6. The hardest part about mornings are: PAIN. I have morning stiffness daily, which is akin to waking up feeling like a tin-man who needs all of his joints oiled. Because of this, I have to take mornings very slowly. The positive part is that my husband brings me coffee after I hobble to the couch. :)
7. My favorite medical TV show is: Grey's Anatomy. But I used to love House (because I'm used to being a medical anomaly/not fitting in medical boxes.).
8. A gadget I couldn’t live without is: a toss-up between my dolly to carry up groceries from the parking garage and my inflatable seat pad, a thoughtful gift my older brother that I originally was offended by (ha!)
9. The hardest part about nights are: how long it takes to fall asleep partly from my mind racing and mostly from joint discomfort
10. Each day I take 15 pills & vitamins. This isn't counting the medicine I get by IV every four weeks or the pills I take once a week! (No comments, please) (Adding it up even surprises me! And to think that prior to getting sick I took no medicine daily!)
11. Regarding alternative treatments I: have tried several, including diets, homeopathic remedies, bleh. I honestly get tired of people telling me to try "one more thing." Some things are worth trying though. And yoga, counseling, and eating well are excellent life practices for everyone.
12. If I had to choose between an invisible illness or visible I would choose: Honestly, probably a visible one. In many ways, it would make the emotional pain of my disease lighter. But the positivist in me wants to say "invisible" because of all of the ways having a disease people can't see has made me have to mature emotionally and spiritually.
13. Regarding working and career: Work is a giftSometimes disease has significantly limited my ability to work, and so when I am able to work, I am so thankful to be able to. Disease has also shaped my sense of calling and career purpose, making me want to become a counselor to help others experiencing pain like I have.
14. People would be surprised to know: That I am always in some level of physical pain or discomfort. That I undergo chemotherapy infusions every four weeks. Or that some months I at the doctor's office/hospital 3-4 days out of the week. (This has improved greatly lately!!)
15. The hardest thing to accept about my new reality has been: how it impacts my marriage, friendships, and sense of self. It's like there is the self I know and then there is the self I have to experience when in immense pain or very sick, and sometimes she's not so happy or energetic.
16. Something I never thought I could do with my illness that I did was: finish college on time! I got sick at the beginning of my 2nd semester of junior year. By God's grace and the support of professors I graduated on time and summa cum laude (with highest honors). I'm still inspired by that experience. It pushes me to remember that I can do what is in front of me with God's help.
17. The commercials about my illness: PISS me off! Think Humira, Enbrel, Phil Mikelson (sp?). They all make it look like they are miracle drugs. And it's simply NOT true. They also make it sound like taking the drug is not a big deal, but they actually suppress your immune system and carry major risks of developing cancers, side effects, etc. It's not all smiles and happy families when the drugs make you get infections an average of 8 times a year.
18. Something I really miss doing since I was diagnosed is: rock climbing and running.
19. It was really hard to have to give up: having as full of a schedule as I used to
20. A new hobby I have taken up since my diagnosis is: watching TV series. I used to judge people who watch a lot of TV...and then I got sick. When you are in raging pain for long periods of time, sometimes TV is the only thing that can adequately distract you.
21. If I could have one day of feeling normal again I would: Wow, that question brings tears to my eyes. I would go on a hike at sunrise somewhere with a vista and read some Scripture outside, followed by rock climbing with friends. And then I would go home and make a huge dinner for my friends and sit outside eating and talking all evening long. And I would have energy for it all.
22. My illness has taught me: that suffering and pain can mysteriously help us know God and experience deeper joy in life, because God himself knew and REDEEMED suffering in Jesus and one day because of his work, I will have a body that is free from pain and a heart that no longer feels angst but is overcome with endless joy.
23. Want to know a secret? One thing people say that gets under my skin is: "How are you feeling?" as a greeting when they see me. Ugh. I want to be known as more than my illness. Though your statement is well-intended, it makes me feel like less of a person. "How are you?" would be much better.
24. But I love it when people: can tell I'm not feeling well and say something kind... or when they simply listen at the times when I am willing to tell them about how I'm feeling or what I'm experiencing disease-wise.
25. My favorite motto, scripture, quote that gets me through tough times is: "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalm 73:26
26. When someone is diagnosed I’d like to tell them: First I'd like to validate their experience, because I know the diagnosis process can be incredibly scary and difficult. Then I'd tell them that though it might not feel like it, they are not alone in suffering with a disease. I would share about my experience if it seemed like that would be helpful to them.
27. Something that has surprised me about living with an illness is: How I have to grieve over and over again. Grieving over the effects of illness happens suddenly out of nowhere. Living with a severe, active disease is emotionally difficult.
28. The nicest thing someone did for me when I wasn’t feeling well was: came over to my house, sat on my couch, and let me cry in their arms. But so many others have brought me meals, occasionally washed my dishes, or sat with me during treatments. This was for my sister's illness not my own, but one young man brought my family flowers in the hospital just a day after his own mother had passed in that same hospital. That probably was the most amazing display of kindness I have ever experienced.
29. I’m involved with Invisible Illness Week because: Living with an invisible illness is really hard. People need to better understand the experience of the millions of people affected by diseases like mine that you can't see at the first glance. When you better understand our experiences, you can live with greater empathy.
30. The fact that you read this list makes me feel: incredibly loved.

If you are reading this and have an invisible illness, I would love to hear from you! Together we can create a more understanding world. You can access the Invisible Awareness Week meme project here and share it on your facebook page or blog!

Simple Advice for Surviving a Flare

You are imperfect, you are wired for struggle, but you are worthy of love and belonging.
— Brené Brown

Flare-ups are a regular and unfortunate part of living with an autoimmune disease. They LOVE to come right when we are busiest, invading our days with pain and dizziness where there was no room for such miseries. I'm experiencing one currently, as often happens when I am due for my next chemotherapy infusion (Remicade every four weeks, totally worth it!). (It's also the first week of my last year of graduate school, so, of course, it's the perfect time for me to be flaring!)

Flare-ups are a great occasion to practice self-care. Actually, flare-ups pretty much force us into caring for ourselves, and if we don't we usually end up feeling worse. When we choose self-care from the beginning, we can reduce the amount of emotional distress that so often comes along with our flares. Here are three of my go-to tips for surviving a flare:

1. Don't push through the pain.

This is easier said than done, I know. When responsibilities are adding up, resting feels like the last thing we need. But stress can quite honestly just make your disease worse. Take a deep breath and then set aside the responsibilities you can. While you won't always be able to take a full sick day, you can try to lessen your load for the day, take a short nap in your car, or take regular stretch-breaks to keep your joints from getting too stiff. 

2. Be kind to yourself. 

No matter how many times we've endured them, flare-ups are gonna affect us. Flare-ups are inflammation-terrorists, wrecking havoc on our joints, organs, and even emotions. If you are at all like me, you will sometimes be surprised at how low a flare can make you feel. Remind yourself that you are human and that your body is enduring something incredibly intense. You likely are not going to feel like your normal, productive, perky self during a flare. So arm yourself with grace and kindness: you don't have to be perfect, and this will pass.

3. Make your kindness practical.

What's comforting to you during a flare? For me it's taking a hot bath and watching lots of episodes of TV shows (at the moment I'm re-watching Gilmore Girls season 6, for about the 5th time...). Do something comforting if you are able. And better yet, let a friend do something comforting for you. It might feel strange, but letting a friend bring you dinner or a cup of tea could just be the encouragement you need today. We were never meant to carry the burden of sickness alone. If letting a friend in feels too draining today, then after your flare is over think about telling a friend what kind of support you might need in future flares.

And, if it's any consolation, this is advice that I have to follow too. Now, back to my Gilmore Girls...

A New Season

Settling into our new home

Settling into our new home

(I wrote this last week as I was packing to move--hence the blog silence lately!)

On Friday my husband and I are moving into a downtown Denver apartment building to start our job of being a Cares Team. (You can learn more about the Cares Program here.) As with most big life changes, I'm excited, a teensy bit apprehensive, slightly nervous, and a bit stunned at what is happening. At the end of this month I will also be starting my new counseling internship at Authentic and True Counseling Center, where I will be starting my private counseling practice. In a whirlwind of events, I ended up needing to leave my original internship placement early. What could have been an incredibly frustrating circumstance led me to ann amazing opportunity. Essentially, at Authentic and True I will get to start my counseling practice a year early! (Which also means I will start being paid now, rather than upon graduation! Counseling folks know this is a remarkable blessing that is pretty much unheard of for master's level counseling students.) The plan is that I will be a part of Authentic and True's practice the entire time I am getting my counseling licensure hours. So, rather than 1) working an internship that's unpaid and will in no way lead to a job and 2) graduating and not having a direct way to start accruing clinical hours for licensure, I have a job, an amazing supervisor, and a stable place to start my clinical work! 

It honestly feels like the summer of blessings. In addition to the new apartment/job and internship, all my GI testing showed nearly nothing wrong! I don't have Ulcerative Colitis! At first this felt pretty discouraging--an odd reaction only those who have carried the burden of being undiagnosed or misdiagnosed understand. But in the end, I'm relieved. Having AS is enough for one lifetime. All the tests showed was some stomach inflammation and a small ulcer, probably caused by all of the anti-inflammatory meds I have to take.

So as I sit here in Starbucks, escaping the war-zone of my half-packed apartment, I'm reflecting on this new life season and the newfound sense of resolution it has brought. I, Katie Jo, with and despite my chronic disease, can live a good, fulfilling, productive, and exciting life. Foraying into the blogging world has made me aware of some amazing women who are living this chronic-illness life with so much intention and fierceness. Women like Aimee who has Rheumatoid Arthritis and regularly posts videos of her workouts. (Aimee, your "Stronger than RA" t-shirts strike a chord!) Or take Kenzie , a college student and nanny who has juvenile idiopathic arthritis, is studying to be a social worker and regularly blogs with honesty and wisdom beyond her years about her life and disease. My new circumstances mixed with inspiration of their determination and diligence are giving me a new, stronger, more certain desire and will to live my life as fully as possible. I want so deeply to not let AS win in my fight to live with joy and the intention to bless others. And, lately, I'm just not ok with AS keeping me on the couch instead of on my bike, walking my dogs, or working out. 

It's a new season, which means I have new opportunities to exercise agency in my life to live as I want--as a fierce, loving daughter of God who won't let disease keep her from loving others (or herself!).  And there, friends, we have the constant tension of chronic illness--of practicing acceptance while also pushing for fullness in life. Both are necessary, but without the tension, life becomes unbalanced. May we live the tension well!