My mind has been struggling recently with things that didn’t used to be a problem. It’s a common side effect known in the chronic illness community as “brain fog” but at the end of the day- whatever you want to call it- it’s that the pain is so intense I can’t always remember. It actually is embarrassing to me because it seems to be happening more and more recently. A little telling of how things have been.

So the “notes” in my phone are all over the place with half thoughts to not forget. And sometimes there are quotes from people I love that I wouldn’t have forgotten before but maybe I would now, if I didn’t quickly write it down. And then I look back and they are like little treasures in my phone I find regularly. And some of the notes are clips for future blogs- and while those aren’t treasures- I almost forgot that I wrote it and I’m so glad it’s saved for me to expand on later. A gift for my foggy brain. (Thanks to the iPhone for having a notes section!)

I wrote something during my last infusion in a note that I had forgotten and I just came across it- it’s written to the Lord.  It says this,

“You’ll find me here.
Right here.
Tucked in.
Holding tightly to You.
Safe.
Held.
Whispering, ‘hineni’
While machines pumping medicine into my veins loudly beep
I’ll be on the 7th floor
Washing my hair on the bathroom floor
Reciting hymns, choruses, scripture truth that remind me who You are
You’ll find me here.
Right here.
Tucked in.
Holding tightly to You.
Safe.
Held.
Whispering, ‘hineni.’”

When I came across it, I remembered exactly how I felt at that moment. It was one of these moments that have been happening more often right now- where I feel both so much pain and so much assurance that the Lord is with me. I was on the bathroom floor of a hospital room, processing a hard day while washing my hair and also feeling thankful for help and that I was surrounded by the team that makes me feel most confident about my care. I was on the bathroom floor whispering truth to my heart while also feeling so teary. God really can meet you anywhere- even on the bathroom floor. Maybe especially there. Sometimes I feel like I hear Him loudest and feel Him most when I’m in a hard place or rough state. I wrote this right after crawling back into bed. And while we could swap out a few words today -this sentiment- I feel this today. The pain inside my body has become more and more humbling-in ways I’m still not completely sure how to explain. And this season has, honestly, been so hard. Most recently, I’ve been feeling it more intensely. More pain, more diagnoses, more treatment, more medicine, more doctors, more medical bills, less sleep, less rest, less “just for fun”, less social, less travel, less vacation. 

And with that comes big questions, big feelings, and many unknowns. 

Just being honest. I know that’s uncomfortable. 

And – hear me loudly- this is equally true- the Lord is near. 

I’ve tried multiple times to explain how I’ve felt it, witnessed it, and experienced it recently. I have half started blogs and notes to try to put to words how beautiful it is. And I continuously come to the conclusions that words just don’t do it justice. I just- feel Him closer (maybe deeper?) than I think I ever have in my life. 

And you know what? For me, that does not eliminate the hard….at all. It just means it’s so wrapped together that I am okay even when it feels like that’s not really true. It is.

I’ve had multiple moments in the last few months where something awful or terribly hard has happened in my medical journey-  but the story would be incomplete to share it without sharing how something incredibly beautiful happened in the same experience too. A “both/and” of sorts. I know that might not make sense to you. But it is what’s happening. Some of the hardest moments I’ve known and some of the most beautiful things wrapped/intertwined in it. And I just wonder if the story that’s being written makes it impossible to separate the hard from the beauty.

I want to pause and acknowledge that I know that this makes some people uncomfortable. We want to hear “life is beautiful” and that is true. And also “life is hard” and for some people that’s not really what they want to hear especially if you are a person who needs to “fix it.” I know. But I think one of my passions in the last 16 almost 17 years now of pain has been discovering what it looks like to hold space for both. And learn how we can walk with people well through their hard thing. Forget if it’s chronic pain or multiple new pain disorders. Their hard, (your hard) could be marital, trying to conceive, miscarrying, parenting, special needs, mental health, financial, loneliness, sickness, grief, work, friends (or lack there of), waiting for something that seems to be nowhere around the corer, and on and on. I am convinced that life would be more beautiful if we learned as humans how to walk with people in both their joy and their pain. And, if we were okay knowing that those aren’t always going to come out even. Some seasons hold lots of confetti and celebrations -some hold lots of tears and pain. 

I’m a big confetti thrower- but gosh, there has been so much hard in my life recently. 

Sometimes it feels too hard to write here when that’s true. I feel like no one wants to hear that- it’s uncomfortable especially when that’s not your season. Trust me, I get it. And being really honest with you- it makes me uncomfortable when other people are uncomfortable and need to throw out a positive thought to try to fix it. So-if you feel tempted to do that with me, please give yourself permission to stop reading. I mean it. It’s okay to bless and release this- to bless and release me. The reason I write is because then I encounter these moments with the Lord. Moments where I see that He didn’t let that horrible hard thing be left without so much intimate beauty wrapped around it so I can’t separate the hard memory without a beautiful reminder that He was near. And I am reminded that these moments have to be shared too. Because maybe right now you also feel like the hard is so heavy or lonely or impossible- and maybe you need an invitation to see how God is working in it too. 

Sometimes it is easy to see and sometimes it feels like there is nothing to see. I get it. I guess that’s why people have a practice of keeping gratitude journals. I’ve been known sometimes to really have to look hard–and see where I see the good and the beauty. Sometimes it is really little. Currently the request is something like, “God, I can’t do this without You. Please help me feel You near.” And sometimes I see it in big ways- and sometimes it’s something so little but I know it’s a reminder of God’s faithfulness and His presence.

I believe that part of what the Lord is teaching me in this season is how to feel Him near when that seems nearly outrageous. And that’s changing me too. I ask harder questions of the Lord right now. I cry more often right now. I pray bigger prayers right now. And I haven’t stopped whispering “hineni” (Hebrew for- “whatever You ask, I’m already in agreement to it”) because honestly? I trust Him. Even when this seems so confusing to feel more pain.

Really what I’m saying is- I know He hasn’t left me in my hard. And I know He doesn’t need me to pretty it up for Him. I can take my big feelings to Him. I can say all the things. And He doesn’t leave me. And honestly? More often than not, it feels like He’s somehow whispering back to my heart, “I know. I’m right here.” 

When pain gets so loud- and right now-it is so loud. I have to remind myself even more regularly what is true and why I believe what I believe. And I believe the only reason I’m still moving these days is because of the Lord. 

That’s a lot. 

And- if we sat across the table together – I could tell you story after story of how He has made me smile in deep pain. Things I say to Him only that I then see throughout the day or in a painful moment. Stories of how He has surprised me in beautiful ways while also seemingly allowing more pain in my body to be part of the story today. It’s both. 

It doesn’t change the hard. It doesn’t change the pain. It doesn’t change the volume of appointments. It doesn’t change the unanswered questions and broken dreams. It doesn’t change the medical bills. It doesn’t change my limits in hopping in the car to visit people I love. It doesn’t change that I still can’t dry my hair. It doesn’t change my new pattern of needing to cancel because pain is so intense it’s making me sick. 

It does change how I see this life. This beautiful and hard life. It does make me feel more passionate about walking with people in the middle of their hard and encouraging us as humans to learn to do that better for each other. It does make me change how I check in on people- what I ask- how I pray- what I say- how I can meet needs or just simply sit quietly better. I’m still learning all of this. But I see that becoming a little clearer in this season too. 

Thanks for listening. I have no conclusion. Blame the brain fog, I suppose. Or just -the fact that everything doesn’t always need to be wrapped up in a beautiful bow.

Adonai, thank you for being here in the middle of the hard. Thank you for being big enough to hold it all -and desiring me to come with all my questions and feelings. Thank you that this isn’t too much for you. Thank you for never leaving me no matter how intense the pain is. I trust you. Hineni.

**If you care to read- as a conclusion- I’ll end with three thoughts or ideas on how we can all maybe look out for our people who are walking through their hard:

1. If you personally are a person who struggles with boundaries walking with someone who is struggling can be really hard. Go back to “Bless and Release” from earlier. Don’t’ feel guilty for needing boundaries- but you also don’t need to announce them unless it’s really come to that. For example you don’t need to say, “This is a lot for me to hear but I’m able to text if you want to tell me.” (well now i want to tell you nothing) but you might say, “I’m driving for the next twenty minutes and I thought of you- and thought I’d check in and see how you are.” (now I know you only have twenty minutes but care to check in) It’s okay to have boundaries in the way you enter in just because the person you are caring for doesn’t get to have boundaries on their situation like they may desperately wish for. It’s not your job to fix it. It’s your job to be a friend who’s not scared nor runs away. To do that- that often requires some kind of boundaries to “stay in the game.”
2. Try practical support. Here are some ideas with suggested wording that you can adapt to sound more like you/your friend’s situation. Try to avoid “If you need anything let me know” unless you are close enough to the person that they can actually tell you. Most people need specific suggestions and a little nudging:
   – “I’d like to drop off dinner to you. Does that sound okay? If so, what sounds yummy to you or do you want me to give you a few options? Would Monday or Wednesday work better?”
   -“Can I take your kids for a few hours on Saturday or on a Saturday coming up? That way you can nap or do something for yourself.”
   – “I know you drive a lot to doctor appointments right now. I’d like to help pay for gas or co-pays. Please let me support you today in this way. I’m going to venmo you.”
   -“I’m running errands today. Are there any errands I can run today for you too? I mean it. I’d love to help!”
   -“I know I can’t change ______. But I’ve been thinking about how I can help with other things. If I came over for 2 hours, is there something I could either do with you or do for you that would feel good to cross off? (think- cleaning, laundry, gardening, random house projects, or something they might have gotten behind on. *Consider that this is best for closer people than caring acquaintances.
3. Try surprises. Sometimes our friends don’t’ want to talk about it and just need to know they aren’t forgotten. Surprise them with a coffee at the door without knocking or staying and texting a picture of it outside. Surprise them with a door dash gift card in their email for them to choose something that sounds yummy for dinner or a treat to come right to their house. Surprise them with flowers or balloons or a care package. Surprise them with a treat or something you know they like on a hard day or a big day you know is coming up.

Hineni

“The Lord gave and the Lord has taken away.
Blessed be the name of the Lord.” Job 1:21

The beginning of this year I was throwing confetti and sharing with you the gift of hope I had received. It is still there- that gift of hope. We are still on the right track. But something happened about six months ago – and I’ve been dragging my feet to tell you because, well, I’m fragile about it. And it’s a lot more fun to throw confetti. 

My health took what felt like a really unexpected nosedive back in June. I started experiencing new pain symptoms and immediately I thought something was very wrong. I was talked down from that wave of anxiety, because the chances of something actually being wrong were not nearly as high as my RSD presenting in a different way and “simply” flaring. But days turned into weeks and it was just becoming more obvious to my medical team that something maybe was wrong and I needed to get some testing done and figure out what was happening or at least rule out what was not. Meanwhile, I personally had really started accepting that this was just  a crazy flare. One of my doctors told me that maybe I should take a break from work just in case I was making it worse by pushing. This advice came a few hours before my first night of 3 weeks of Summer Kids Club (an evening summer camp for which I was the director), “I can’t just stop working. I’m about to have my 3 busiest weeks of work for the summer. I just need to get through these weeks and then at least I’ll have an infusion not long after!”

“Katie, if this isn’t RSD, the infusion will not help it. (long silent pause) You need to be careful.” 

What? These infusions have been the best medical gift! They have allowed me to live so much more of my life. How could they not help me with this? I felt like someone kicked me hard and knocked the wind out of me- and I wiped my face, hung up….and we had the first night of programming. 

I told my Summer Kids Club team that I was advised not to work, the very next night at a team meeting. Which, of course, we all knew I couldn’t just stop- but when I tell you I could write a whole blog about those three weeks and how that team carried me- gosh, I’m teary again just thinking about it. They carried me. I was actively falling apart more by the day and they carried me. (thank you, friends, for me being the hands and feet of Jesus and for being my hands, feet, and brain when I was barely standing.)

I was ready to admit something was wrong, by the time Summer Kids Club was over. Which is good, because my test results were ready to as well. It was seeming more and more likely that I was about to be diagnosed with another pain disorder.

I know.

I sat on the other end of a FaceTime call being told this, right before going in for my August infusion and I remember thinking, “How is that even possible? This has to be a flare.” Noticing my face totally changing and probably seeing a wave of grief sweep over me, my doctor said, “I want you to hold on to something. You already have one of the pain disorders that has the least amount of treatments. There is pretty much no other pain disorder we could find in you that we don’t have more help to offer than what we can offer for the RSD.” I nodded. And that replays in my mind to this day. A grounding reminder. 

I went into that hospitalization (August 2021) aware that while the infusion was doing its job for my RSD (which it did) that a Rheumatology team was going to be doing their final steps to get a diagnosis. What ended up surprising me was that they found not one but two autoimmune diseases that cause severe pain. 

My body now has three pain disorders in it. 

What has taken me so long to post this comes in this next paragraph. This is what feels so fragile: I was not able to comprehend more pain. At least, not in different forms then how I have felt it the last 16 years. I was able to comprehend (because I’ve been prepared for it this whole time) my RSD worsening- but new pain? New pain disorders? When I tell you I was not able to comprehend -we’re talking I was able to recite what was said but nothing was sinking in. And what was happening was that it felt like everyone was asking me what number was achieved for my RSD during infusion (a very valid question that had no easy answer) and in those moments I kept having flashbacks to the pain team walking out of my hospital room while I was still in a lot of pain with them saying it was a successful infusion and me sitting there confused- or the Rheumatologist sitting on the edge of my bed delivering hard news and me just staring. And then, the few times that I did answer people, “Well- my RSD came down to a 4. But I was just diagnosed…” would turn into people looking at me with sad eyes and me staring back blankly. When I finally caught up with myself, weeks later, I was drowning and I was late to the processing of my own news. Which, for the record, feels terrible. 

So, I do apologize for my delay, but now you see why I couldn’t possibly tell the internet when I wasn’t able to wrap my head around my own body.

A lot of what’s happening for me right now is bringing me back to when I was first diagnosed with my RSD. Except, this time I am older, I’ve been living with pain longer, and I am, shall we say, “experience-trained” in medical advocacy. And, the words that my doctor told me right before these diagnoses came still ring very true: there’s much more to do for these than my RSD. More help and things to try. Also, this pain is not worse than my RSD-it’s just so different and I have not gotten used to it yet; and that takes time to get used to pain not going away. It’s hard to get used to multiple types of pain- and seeing multiple doctors and proceeding with multiple treatment plans- for it all. I desperately wish my RSD team could take on these new diagnoses. But they cannot- it’s a totally different field. Thankfully, they are fabulous and read up on all of Rheumatology’s notes- but it is a different pain so with that, I start over with adding new people on the team. 

It remains true that I have a fabulous medical team who works together to help get me to the best I can be. I am so blessed because that’s not (unfortunately) normal in many people’s experiences. Ideally, once we get these two new pain disorders under control, things will be much better then they are currently- but realistically, the trajectory now has just….more pain, and worsening pain in the future. I’ll be honest, I’m still struggling to wrap my head around it. Similarly to when I was diagnosed with RSD, you kind of tend to believe that whatever is “wrong” has a “fix”- just give me a pill! That’s just not always how it goes. And that’s okay to feel sad about that. 

So, here I am. 

I have never felt weaker and in need of more help than I have these last few months. It’s uncomfortable, humbling, and beautiful all in the same breath. This weakness slows me down. It slows down the life I lived just seven months ago before this new pain started. And I have to ask for more help than I ever usually have to, and on a daily basis.….and yet…..

And yet. 

I can’t quite explain it, I’m still watching it unfold- but, this next level of pain is truly drawing me closer to the Lord. There’s a dependence that’s deeper because, honestly, I’m hitting a wall here with the pain. It’s too much for me. And I can’t wrap my head around why He would allow me to sit in so much pain if it wasn’t for His glory and for my good. Otherwise it’s just mean. And the Lord is not mean.   

So I’m leaning in differently. I’m leaning in more. I’m truly unable to do most everything without Him giving me the strength. I am very aware of His presence right now. And it’s changing everything about me, so it feels. I fully believe it’s the only reason I’m okay. It’s the only reason I’m any sort of calm.I feel Jesus near.  And as long as that doesn’t change – I know I will be okay even when it feels like I am not.

So yes, it’s definitely easier to share joyful celebratory moments of being a “2.5” and throwing confetti. But that’s just it. I still can throw confetti. In fact I did a couple days ago. Some of my best friends are professional photographers and I asked them to help me capture some confetti pictures for my upcoming birthday. They turned out so much better than I imagined. I mean a lot of that is because my friends are crazy talented. But I think more of it was that joy was captured. Joy that is not because my circumstance is worth celebrating. It’s because “the joy of the Lord is my inheritance” (Maverick City “Joy of the Lord”). In fact, one of my friends had framed one of the lyrics from that song that’s made me teary in these last couple months, “There will be glory after this.” Pretty much every song that talks about Heaven makes me weepy. But I believe that: there will be glory after this. 

So now, I’m waiting on a phone call to hear that a bed is ready for me at the hospital for my next infusion. Each time I get to the end and am waiting on an infusion, I am very ready for help. But this feels a little different. I am so tired, a weary kind of tired, and my body is just absolutely covered in pain.  I just need someone to point me in the direction of a hospital bed to lay down in and receive some help from a medical team I trust, and get some rest and hopefully some true relief. So my prayer is to be with the staffing I’m comfortable with that knows me best, a smooth and effective infusion, and for rest and relief to take place. No matter what, I will keep walking forward trusting that the Lord is not mean and has plans for my good and His glory. I can trust Him. And I will praise Him. 

There’s a beautiful Hebrew word, “hineni” (heh-nen-i) that I’ve said almost daily for the last year at the end of my prayers to the Lord. It means, “Whatever You ask, I’m already in agreement to it.” It’s actually what was said where we sometimes read “here I am” in our Bibles (ie: When Samuel thinks Eli is calling him in the middle of the night, but then Eli realizes God is calling Samuel).  But what a bigger response then, “here I am” right? One is like saying “present” when the teacher calls your name (still important), the other is saying “yes” before knowing what you’re saying “yes” to because you trust and have faith in the Lord. 

I’ll follow the Lord anywhere. And I trust Him enough to say “hineni”. In the beginning, I used to say it and tell the Lord “I want to mean this, but I’m scared, and not sure I fully do mean it.” and then I stopped feeling quite as scared. Now this volume of pain with no visible end  is scary to me but it’s here. It’s in my body- and yet- I feel calmer than I did even before this new pain surfaced. I have to believe that’s because I already surrendered to the Lord when I prayed, “hineni” and I feel the Lord near to guide me through each moment- and even carry me when I simply cannot walk. 

Please, Adonai, heal my body, heal my whole being.

Yes, please Lord, do miracles.

And yes, please Lord, get me in for an effective smooth and calm infusion today. 

And if not, I will still praise You.

I will trust that your plan is better than mine.

I will trust that what you have in store for me is good and will give You glory. 

Help me move out of the way. 

Hineni.

I posted on social media a few pictures earlier this week. It was meant to be an “ebenezer” (1 Samuel 7:12) – a reminder of how the Lord has been faithful. But it confused some of you of what “2.5” meant or what any of it meant. So, let me reintroduce myself.

My name is Katie and I have a disease in my body that causes me to suffer with pain 24/7.

Background

The summer before my freshman year of high school I had two serious injuries within three weeks of each other: a concussion from a bad fall on slippery “rock” while rock jumping and an oral surgery for a tooth extraction where they ended up hitting a nerve. Both were rough and painful. Both took a longer recovery. Both I recovered from completely.

3 months later, after having been fully recovered, I felt extreme pain in my back in the middle of a 9th grade history class. It came out of nowhere, stole my breath, and caused an embarassing scene. I didn’t know what was happening. I was terrified. But it went away fast. And then it was like nothing had happened. Pain free. A couple days later, I was in the shower when that same horrible pain came back, this time, in my jaw. I got out of the shower, holding my face, completely freaking out. Half way to the hospital the pain went away completely. I got checked out but felt fine. No one knew what was happening. A few weeks after that, I started getting those episodes in my back about once every other week, which turned to once a week, which turned to a couple times a week, to every day, to multiple times a day. Each episode coming and going strong causing a scene, a lot of pain, a lot of fear and no answers. Whatever was happening to me was getting smarter and better at doing it and doing it more often and stronger.

At the time it was remaining localized to my back. And while it came like a sharp, stabbing knife to my back- it also left. And however embarrassing the scene and horribly painful it was- I still felt “normal” relief most moments of the day. While it destroyed a “normal” high school teenage life, it was still in its “better days” at the time- though we would never have thought that could possibly be true then. But gracious, was it one of the scariest times. There were so many unknowns then – no “why” and no “what.” Ultimately, it took 3 years and countless doctors to figure out what was wrong with me. But even then, the diagnosis I was given wasn’t quite right. So the treatment plan I was given- ended up doing way more harm then good, and that’s oversimplifying it and putting it way too kindly. I was also promised that while treatment would be horribly intense – it would cure the pain I felt.

By this time I was a junior in high school. It was in…

• November when that diagnosis was given
• February when I began treating my pain incorrectly
• March when I had a 3 three week complete remission (meaning no pain)
• April when the pain returned but this time to my entire body and would never leave or give me a second to breathe and have a break free from suffering (still true to this day)
• May when treatment intensified to full days- five days a week (this happened after the pain spread to my entire body)
• June when I was discharged from the five day a week program with a clear message that this was my fault that I wasn’t pain free yet. I needed to go “harder” at this treatment (the one, if you’re keeping up, that did more harm than help). And gosh, did I feel like a failure after giving it my all.

What I know now, with a correct diagnosis, is that it was already too late to stop what was happening to my body. The damage from one or both of those earlier injuries set off something in my sympathetic nervous system causing pain from some sort of “short circuit” to happen. But what the first hospital did in an attempt to help me is irreparable. I was given so much false hope that they could fix it, and then twisted messages that it was my fault that they couldn’t. It took another 2 years for me to be told by a different hospital that the goal is function and quality of life, not healing. That sounds so depressing but after having been told hard messages for years, it did something to my heart to know there was nothing I could have done to stop it. Not after it had taken three years for them to diagnosis and stop the initial spread after it came back post remission. That freed me. Did I have to grieve that news? Yes. Do I still sometimes have to grieve that news? Yes. However- my mindset shifted and now I was on a hunt to pursue the best quality of life I could have. Side note: we do not limit our God. Our God is the God of miracles. We still pray for healing – I’m simply putting to words what we would say from a medical side. So yes, keep praying! And refer back to the Talitha Koum blog for my thoughts on all that!

The correct diagnosis and prognosis came in my freshmen year of college. The pain had gotten so much worse and I had to pull out at the end of freshman fall semester. I couldn’t walk, but I knew from previous experience that this could probably be corrected if we acted fast and rehabilitated. But I also knew I couldn’t return to that hospital that told me this was my fault. So my next course of action was a month long inpatient pain rehabilitation program for adolescents out of state. It was actually my freshman college roommate who found the program and I knew as soon as I saw it that it was right. So I spent the next month over Christmas and New Years Eve in that hospital. There, I did some needed rehabilitation and regained proper function of my legs. There, I received that diagnosis and prognosis. There, I given space to grieve and the correct support to rally. There, I was given suggestions for the long road ahead of me. The road that would mean a progressive and degenerative pain in my body that would only get smarter and worse over time. I had to wrap my head around this and be prepared to fight it head on, not losing any more time then the devastating loss of fighting it the way I wish I would have the last five years. That hospital gave me more then they know. (No, they know. I made sure to tell them for years to come).

I took the next semester off school, finding a local doctor. I found one who was great and extremely familiar and experienced with my diagnosis. We began working together- but only for a short time before he told me that who I really needed to see was his former colleague. Who, fast forward, I have been seeing now for almost 10 years.

Because the pain is degenerative and progressive, I have gotten worse over time. The pain remains in every inch of my body and is constant. (This is true during my best and worst days). But over time I’ve developed extra problems like ocular migraines or weird reactions on my skin or bad headaches or flukey problems that can be traced back to the disease inside my body getting “smarter” and intensifying.

Almost five years ago (August 2021 will be five years), the pain got so bad that I could barely make it to work each day. My doctor said it was time to try something more aggressive and so began these week long infusions. These infusions are 24/7 for one week trying to quiet my sympathetic nervous system and lower the pain. I responded to the first infusion and it brought my pain down. You may know from having a surgery, breaking a limb, having been to the ER for pain, or because you too have a chronic pain disorder what it means to be asked “on a scale from 1-10, rate your pain” For the record, chronic pain patients hate this question and I believe in its best form that question should only be used as a language tool to express where the pain is at today for that one individual. (Also, for the record, I’m one of those patients who hates when people say “12” to that question. The scale was “1-10” if an option was “12” pain patients would say “20” let’s not play this game. It’s also why you’ll never hear me say “10.” Author, John Green, writes about “saving my 10” in his book “The Fault in Our Stars” which many hospital patients quote because it’s so good. But conceptually- if the pain can ever only go up to a “10” we save our use of “10” because we know it could always be worse. I’ve never rated pain a “10” but I’ve called many degrees of pain a “9.”) The first time we tried that infusion my pain got down to a “6” a number I hadn’t seen in years. And? We learned that when we can get the pain to a “6” I can feel things other than pain. What does that mean? Consider when you have the TV on and start having a conversation with someone. If the volume on the TV is low enough, you can tell the TV is on, but you can still hear the person you’re talking to. If the TV is too loud- you have to focus too hard to hear the person you’re speaking to- or just straight up cannot hear them. That’s kind of how it is living with this pain. The TV volume is always on. It’s never off or even on mute. But if we can lower it enough- I can feel my clothes against my skin and pain. I can feel grass under my feet and pain. I can feel someone’s hug and pain. Otherwise- I just feel pain. And anything I touch is just more pain.

Fast forward, over the last 5 years, we have learned a lot from this treatment- but one of the biggest is that we know I respond to it. (Amen!) And while it usually only gives me 6 real weeks of relief, I’ll take it! I go into the hospital about every 12 weeks for this week long infusion and we have seen the pain go down to a “5” (I cried), a “4” (we all cried), a “3” (this just happened last November after figuring out a puzzle piece and adding a second infusion that runs simultaneously to the other during the same duration and apparently is able to bring the pain down a little more- which is incredible. I laughed out loud when it happened)….and, this time….a “2.5”. Unbelievable. And brand new. And a lot of questions left unanswered still- but a lot of exploring to be had with the relief I could receive. The pain will still come back. But- the lower we can get the pain the more I can do, the better I can feel, and potentially maybe we can buy a little more time between infusions (again, maybe, we don’t know a lot). But this is a gift. These intense infusions are a gift. And I could (and probably will) write a whole blog on them.

Hopefully, if the “2.5” banner confused you, you’re now caught up to speed. One of my best friends was there with me all those years ago when my pain went into remission- she ran to my front yard and we celebrated in the yard jumping up and down for the gift this was. All these years later, she did the same again for the “2.5” this time bringing her husband (another close friend of mine), a banner she made, confetti to pop, champagne, and documented what the Lord has done. A “2.5”, you guys. A “2.5”. The Lord is so faithful.

A Request for You

I believe in my heart that I am called to use my pain to give glory to God, to help others who are hurting, and to encourage you. This is my story, but it’s not. It is the Lord’s. I will keep sharing, no matter how vulnerable it feels sometimes. Thank you for celebrating with me and for praying for me. So many of you have been part of my village for a very long time. Some of you I do not know, who just came across my blog or are friends of my friends. Welcome. Thank you for being here. But a lot of you have prayed for me and many walk with me. Thank you from the bottom of my heart. Pain is so humbling and I truthfully hate that- but I see how God uses it far greater than I could have ever written.

One of the things that has come out of all of this is a passion I have to educate others on how to support the people in their lives who are hurting- from physical pain or any other illness or other kind of “pain” in their life. I’ve learned so much about this and feel burdened to help people love their people better. I’ve done a few talks on this specifically, which is one of my favorite opportunities. So I’m going to say something I usually touch on so count this true for other people in your life, not just me. But, humbly, I ask, now that I’m sharing about my own pain even more specifically with you in written word, inviting you in to my own story, and not being able to look you in the eye and say it more gently- that you not share your latest suggestions about how I should fight pain or what I should try. This is a tempting thing for people to do because people really do want to help. And watching someone fight pain is a very helpless feeling. What you might not know (because how would you know) is that it’s not typically helpful to come up to a friend fighting any illness with an article you found about a diet to try, an alternative therapy to check out, a medicine your hairdresser takes that might help, etc. If you feel really strongly that you need to share- go to their closest people (a spouse, best friend, etc)- someone closer to them then you are- and bring it to them and let them decide if it’s something the person needs to hear. What I ask from you, is that you support me by doing the same. I know you care. But believe me, I’ve tried a lot of things I don’t share here. Like- way more than you probably would believe. And I have a team of people brainstorming best things for me. Please trust that and pray for them too. We count on discernment that the Lord gives. But please respect me in this way. I know you will. Thank you for caring and praying.

That being said I hope you know you can always feel free to ask questions about my pain or not feel afraid to approach me about it.

Ebenezer

So, back to this sweet ebenezer. Thanks to my friends who knew it needed to be documented, I now have pictures to remember that time the Lord brought my pain down to a “2.5”. Will it happen again? Will this be the new normal? Is this a once and done thing? How long will this “2.5” last before it creeps up? We don’t know but we document so we remember what God can do and has done. The beauty of ebenezers is how they are tangible reminders of the Lord’s faithfulness. It’s why some people keep gratitude journals, or write the story of what the Lord has done, or take pictures, or do something monumental to help themselves remember. As it’s said, we have good “forgetters”. Unfortunately, I think that’s true. It’s easy to quickly forget how God has been faithful. I don’t want to easily forget this. And if you have a hard time right now seeing an ebenezer in your own life- feel free to borrow mine as your reminder that God is the God who sees and knows and cares and loves and is good. I see the Lord’s faithfulness in other people’s stories all the time and cling to that when I don’t feel it in my own life. That’s part of the beauty, I think, in doing life together. We can see how He works in each other’s lives and praise Him for that even when we are still waiting for answers to prayers in our own.

1 Samuel 7:12 “Then Samuel took a stone and set it up between Mizpah and Shen. He named it Ebenezer, saying, “Thus far the Lord has helped us.”

Thank you for this gift, Adonai. We give You all the glory. Thank you for this ebenezer.

Hi. It’s been a while, I know.

A lot has happened this last year that took longer for me to process- and while I desire to share closer to real time- I needed to give myself space and time and permission to be quiet. But here I am- feeling ready to come back – and also not at all ready (because losing momentum can cause vulnerability freak outs when you forget how to do this)- but that’s okay- I believe it’s time. I treasure and am grateful for this space and for you.

In a nut shell, New Year’s Eve 2018 was pretty intense. My Pop was only a month into a scary cancer diagnosis and my family was still in shock and crisis mode. We had just come off of Christmas where my grandparents couldn’t attend our family gathering since my Pop was too sick- and it felt scary to wonder if this would be our new normal- at least- that’s where my mind and heart went, I won’t speak for anyone else. One week later, on NYE, my parents made a decision to go be with my grandparents for the day. I was on my way to be with my siblings, but stopped first to visit my friend’s brand new building for her nonprofit for grieving children and their families that we had been praying for, for a long while. I got to my siblings and we made the most of the holiday that felt fragile and broken and confusing. I didn’t know what 2019 held but I was not feeling good about it. So when my sister asked us about new year’s resolutions- I couldn’t help but get teary and just whisper “I just don’t want to be exactly where I am now in a year.” I couldn’t have told you what that meant at the time- and here I am, just over one year later, and looking back, I definitely wouldn’t have been able to guess.

In January, the Lord spoke to my heart that a big change was coming and I was to pray for “a new song in my heart.” I didn’t know what that meant or looked like- but I felt peace about it. So I began to pray.

By February’s end, the Lord revealed to me what that “new song” was, after only 8 weeks of praying that prayer. And I…..said “no thank you” to it. (Spoiler: this never really works with the Lord.)

By the summer the Lord had done a “180” on my heart and I was moving forward with what I felt the Lord was calling me to next.

In August, I told the people I love in Hershey, PA that I was leaving and moving back to King of Prussia where I accepted a job at my home church.

In September, I left Hershey: leaving my job, my apartment, and people I love. There was a lot of mixed emotion and a lot of prayer. Then I went away for a week to my favorite cabin in the woods in Maine and retreated. There, the Lord spoke clearly to me that the plans I thought I had for myself in this next season were once again a little different than I had hoped and thought. I wrestled with the Lord, but ended up moving forward trusting that His plan had to be better than mine (even though at the time it was very hard to see).

By October, I was working in my new job back in my home town and began volunteering for the same friend’s non-profit who’s building I toured on new year’s eve 2018.

In November, I had an infusion sneak up on me earlier than I anticipated and fell smack over my birthday- ringing in a “new year” for the second year in a row. Along with relief it did bring, this infusion also gave me the unwanted gift of panic attacks that lingered all during recovery.

But December.

Gosh, in December I was ready for a thrill of hope for my weary soul to rejoice over. And it did. We celebrated the HOPE that was brought to the world because of Jesus. Our whole family gathered and celebrated another Christmas with my Pop who was healthy enough to be a part of the whole celebration – which was the very best Christmas gift. I was home for Christmas. I miss my friends at Hershey, and I’m also so thankful to be home. I sang silent night in my home church with tears running down my cheeks through it- just grateful in a deeper way I did not anticipate. And here we are, just over one year later from that emotional New Year’s Eve of 2018- and I’m not where I was in 2018. At all.

There are some complicated emotions and weight attached to many of these events, and part of the reason it took me a while to write is because I don’t want to just rattle them off and make it seem near flippant. A lot of these emotions and weighty lessons are not appropriate to share with the internet because it was kind of a “you had to be there” moment in what the Lord was teaching me and doing in me- and so it’s better you weren’t. However, it’s hard to just write them without that disclaimer of how much of this was formative and complicated. I’m sure you could make a list of your own 2019 lessons and events and say the same to me.

So after all of this, this wild and crazy year, most of which I realize I was silent on this blog for…..here’s what I’m summarizing and taking away. These are the 19 things that left the biggest impression on me in 2019 that I’m taking as we move forward into 2020:

1. The notable trend of “This”- I’m taking into 2019 that so many people write on social media the standalone word “This.” with an attached article, blog, video, cartoon, meme or something of the sorts that someone else created. And what I want to pay attention to is that people seem to mostly post these things (when it’s not, of course, in jest or for pure humor) when they feel like someone else put to words or captured how they personally feel too. Almost like they highlighted or underlined something they want you to see. I want to read/watch/listen to the “this” posts and get to know what my loved ones are feeling more and acknowledge what they are trying to say by the words someone else put to the thoughts/feelings they have too.
2. Be so kind. – It’s nearly trendy to say this, I realize. But it’s probably a good thing to hear over and over. Be kind to people. Be a kind human. I’m thanking God for the kindness He showed me in 2019 and the kindness others showed.
3. “Keep writing.” –My Pastor in 2019 (also read “my friend”) from Hershey told me this the day I told him I was leaving my job. He encouraged me to keep writing- and it meant so much to me. So I’m taking it into 2020 for sure and thanking him for the push and encouragement.
4. “I hope you heal.” – He also said this. And I heard it as a hope not just for my pain stricken body, but for the healing that my heart, soul and mind needed too- and I cant’ tell you how much this meant to me and ministered to me, coming from my pastor. [George Davis, I’m looking at you. Thank you, friend.] I pray the same for you, reader friend, and for me.
5. Cheer loud. – The first memorable thing I did when I moved back was watch my sister play field hockey. I was late to the season but my parents didn’t miss one game. I immediately noticed (beside her skill!) my dad cheering loudly for her, by name, from the sidelines- standing, sometimes pacing. “GO ABBIE!! COME ON, ABBIE!” I was actually embarrassed for her at first- but then realized this was motivating and extremely loving. She was literally seen and cheered for. And it made me wonder if that’s how the Lord cheers for us too. It moved me. And it made me want to also cheer loud (not always volume kind of loud- but showing up) for my people and remember my Heavenly Father is also cheering loud for me. And you.
6. Stand up for people. – I’m thankful for how I watched some of my friends stand up for me in 2019, and I’m hoping I did better at this in 2019 and will do even better in 2020.
7. Nothing about what happens changes who God is. – Thank goodness. No matter how good your 2019 was or how hard- it did not change who the Lord is. And I’m so thankful He doesn’t change. I need Him to be constant. And sometimes I need to remind myself not to confuse what I’m feeling with who God is. Maybe you do too.
8. Be obedient to what the Lord asks you to do. – There were a few times in 2019 that what I felt the Lord was asking me to do made no sense to me or didn’t even feel good. And I’m here to say that obedience in doing it has brought blessing and growth.
9. Speak truth in love. – This can be very hard. But very worth it. And very loving.
10. Say you’re sorry. – This is so important. Do not be above saying you’re sorry.
11. Hold your people- Sometimes your people need to be held. Sometimes literally and sometimes metaphorically as you listen to their words.
12. Give grace- to others and yourself. People need it. We need. I need it. You need it. Jesus models it. Maybe we should copy that…
13. Trust Jesus. – It’s an ever-learning lesson for me.
14. Tell your people you love them. Life is far too short not to. – Dear McIllhenny family, I love you. I loved and appreciated Jeff. His life has reminded me to tell people that I love them and are here for them. You are not forgotten. He is not forgotten.
15. Be a safe person for others to feel they can tell you all the things and not be judged. We can be better at listening, not judging, and being safe. We can do better. – I’ve been having a lot of thoughts about this recently that are still forming. So for now- I’ll leave it at that.
16. Go to counseling. – I personally think it’s healthy. I think it’s made me healthier.
17. Find people who make you laugh and hang out with them. – I love laughing. And I’m so thankful the Lord has given us the gift of laughter.
18. Give people hope – they’re so desperate for it. – May this flow out of you. May this flow out of me.
19. Pop confetti!– Now THIS was new for me in 2019. I used to think confetti was just messy and a hassle to clean up. (still a little true) But then I realized it’s more than that- it’s a joy-inducing visual reminder to celebrate. And pretty much all my friends got confetti poppers this year for Christmas! Leaving Hershey was sad for me. I was thankful for the season that was coming- and also sad to leave. I wanted to end my time there celebrating a good season and not just feeling sad- so I gathered a few friends and popped confetti in the church parking lot after the last church service I worked. And let me tell you I have zero regrets. And this picture is probably one of my favorite pictures of 2019. Pop confetti. Celebrate! More celebrating in 2020- I’m committed to it. And probably committed to more confetti.

There’s so much room to grow. So much to learn. So much to get better at. But I’m back in 2020 to writing (thanks George for the push). Back – and holding my loved ones close- and thankful to where the Lord has brought me.

So, so thankful.

Jesus, more of you in 2020. More loving you, learning from you, listening to you, seeking you. More living with you, loving like you, and leading others to do the same. 

 

 

I’ll be the first to admit how hard it is to keep praying big for what feels out of reach. The Lord knows my heart most intimately, and yet, it feels vulnerable to ask for Him to heal me during a round of treatment. I cry when I pray for healing-partly because it seems like it would be a dream far beyond wonderful. Partly because when I pray bigger; put my heart on the line more, ask because I believe He can and then wrestle with disappointment when the answer is “not yet” -gosh, it feels too much and that makes me emotional too.

So for a while I stopped praying for my own healing. I hid behind the safety of “if I don’t ask for it” I can’t be disappointed if He doesn’t answer the way I had hoped.

The truth is-I am disappointed. And I don’t understand.

I can thank God for a successful treatment that brought my pain down to more manageable levels-praise Him! Back to a “5” which seems to be a popular number for these treatments. This is SO much better than where I was two weeks ago. And hopefully, I’ll get a good stretch of time here at a “5” before going in for round 14. Honestly, there’s much to praise God for. Much answered prayer.

But what do we do with the disappointment? What do we do about the hurt when we lay it all out on the line and He doesn’t respond the way we hoped? Is it disrespectful to keep asking? Is it wrong to be mad/sad/confused/frustrated/disappointed?

No.

No, I don’t believe so.

I have wrestled over time with these questions. But I believe that God wants to hear us whisper through tears or mutter through gritted teeth what we are really feeling. A parent would rather a child tell them all the feelings then retreat from them and not say a word. I think the same is true here.

The last few days I have had to seriously wrestle with the disappointment of lack of complete physical healing. And then with the guilt because I feel disappointed. And then not wanting to speak to the Lord until I was calmer with all my feelings. Followed by the painful silence of trying to force myself to sit with Him because I was so hurt. And finally the emotions while asking the hard questions I wish I could hear His voice to give answers for: “why?” “will this be my life forever?” “do You want me to stop asking because You keep saying ‘not yet’?” “You have the power to heal me, Jesus, without having to say a word-why ‘not yet’?” To vulnerably name for you a few.

*deep breath*

And maybe another deep breath because this is such hard stuff this broken side of Heaven.

I don’t have any answers to the questions I have asked Him through this. I may never have them this side of Heaven. I don’t know a lot. But I do know who God is. And I find my only solace in the character of God. Life with this much pain is so hard- but I know the Lord will never leave me and I find comfort there. I know He is good and that doesn’t change just because this pain isn’t good. I know He is faithful and will get me through each hard day. I know He is compassionate and wants to hear my whole heart and all the feelings. I know He is a Redeemer God and will not let this pain go to waste. I know He is kind and so He isn’t letting me stay in this pain without reason; that would be so mean.

This is what I know is true. It doesn’t mean everything is fine or that big feelings can’t be had. It doesn’t silence the pain or wrap things up in a nice bow. But when I repeat the truths of who God is- then I let them be the loudest words in my head; more than fear, pain, or even lies.

As stated many times within these blogs: sometimes you declare it because you know it’s true, and sometimes you have to declare it over and over until your heart remembers it’s true.

But I believe that we know who God is and can trust Him even when our heart hurts, even when we grieve hard, even when disappointment is so heavy; and we can rest in who God is while we wait for Heaven.

What questions do you ask of the Lord? What big prayers do you pray? How do you wrestle with feelings when your prayers aren’t answered the way you had hoped? What truths do you need to remind yourself as you wrestle with all those feelings?

Hello, round 13. Here we are. Room 1734 curled up in a ball with that churn, crank, churn, crank sound once more. The sound of medicine entering into my body and, Lord willing, bringing much relief.

Welcome.

Feeling my worst, physically, over Easter, is a humbling thing. I would never willingly choose suffering. Jesus did. That’s not lost on me. Worshipping in pain is emotional for me always. But worshipping in pain, thinking about how Jesus chose pain and death for me to have hope and freedom- yeah, I’m a sweet little hot mess on Good Friday and Easter.

On Easter this year, there was this young woman in the service that I attended who was dancing during worship in the back of the sanctuary and I was so teary about it. How she moved her body so effortlessly and in such a worshipful response kind of way- that was exactly what I had always imagined when I pictured myself pain free in Heaven dancing for Jesus.

But I stood there, watching, with a body full of aching pain.

Someday, Jesus.

{Churn. Crank. Churn. Crank.}

Every time I get to the end of an infusion cycle, just before going in again, I text my doctor in a panic, asking when a bed will come, and sending daily reminders about our plan. He always tells me I’m not annoying (I’m definitely annoying) and tells me I’m advocating and need to be in his face and that it’s good. This happens every time. Every. Time. He’s an encourager and huge supporter. The man got me a hospital bed the day after Easter – and doesn’t that just shout freedom.

Freedom!

Yet, I feel like a little girl, crying here after Easter. I know the cross gives me the hope of Heaven. I know Jesus will heal me either in this side of Heaven or on the other side. But today? Today, I ache to be whole, to move my body freely, and to dance without pain. Every time I enter these halls- the place where a lot of life begins and a lot of life ends, I ache for mine to begin again. Oh, I’m so grateful for each time this treatment brings my pain down enough to help me function more. But sometimes I wish they could do more than just lower it. I wish they could make it go away.

The truth is: they can’t do that. They don’t know how. Only my Jesus can heal this broken body.

It’s like Jesus picks me up and whispers in my ear, “I’m not finished yet,” and sets me into a bed to rest.

So here I lay- in a hospital bed with an infusion doing its job so I can find relief and do mine.

{Churn. Crank. Churn. Crank.}

I lay here, before the Lord, with big prayers. Maybe this time You’ll take it all away. I know you can do that. You are a Healer God. And I know that if I could touch the hem of your garment, or touch Your hand-I’d be healed. Maybe this time You’ll heal me.

And if not…

You are the same God who conquered the grave. You are the same One we sang about on Sunday celebrating the freedom, hope, joy and life we have because of the cross. Because of Jesus; my living hope. My hope is in You, Lord. And I believe You’re not finished yet. You’re not finished yet….with me.

I don’t know why my journey includes physical suffering. But I do know where my help and my hope comes from.

Jesus.

Wonderful Jesus.

So I ask you, from wherever you read this to do one of the following:

-if you don’t know Jesus, give Him a chance. I’d love to have coffee (post infusion) and talk together about Him with you. I don’t know how people have hope without Him.

-if you love Jesus, I humbly ask you help me pray for relief and even healing of my body and the aching bodies surrounding me.

-if you are one of the few who enter these literal halls I’m in-do me a favor when you get here? Share Jesus- love these nurses like Jesus would, and keep songs and verses on repeat of His goodness so we never forget and we don’t lose hope.

•

This suffering will not be wasted.

My Lord is a Redeemer.

•

Your suffering will not be wasted.

Your Lord is a Redeemer.

•

No matter the outcome, Jesus.

I will sing of your goodness.

You will forever be my living hope..

May this entire round honor You, Jesus.

Among the many events between infusions this time- I went to a comedy show with a friend. Oh my goodness, what an experience! I laughed so hard my stomach and my face hurt simply from laughing. It was awesome- but that’s likely what you expect from a comedy show. What I didn’t expect is the comedian said something in his show that struck a heart chord in a way I wasn’t prepared for. He said that the reason he does this is because he wants people to have a break for a couple hours from their pain. He specifically mentioned a cancer patient who had come up to him after a show and thanked him for doing just that for her- and he told us again- that’s why he does this.

I cried at a comedy show. Right there in my seat. Because that’s what he did for me too. He let me escape from the deepest pain- and just laugh. And not only was I so grateful, I felt seen, and I felt cared for. I was given the gift of laughter.

I encourage everyone I know who is in pain of any sort- that as they find their coping strategies that work for them, to fill their life with as much worship and laughter as they can. And I do my best to live my life that way- to worship Jesus and honor Him in this journey- and to laugh a lot.

That’s not always easy to do. And blessed are the people in my life who can get me laughing on my very worst pain days.

I don’t try to laugh to breeze over the hard; I do not pretend that it is no big deal and I do not make a joke out of the pain. Goodness, there is such a difference to me. I try to find moments of joy and laughter in the midst of the pain. For me, laughter is a moment of relief in the suffering. It is an ounce of freedom in the bondage of pain.

The last week has been especially hard with this. I’ve cried more than I’ve laughed. I hate that. I’ve cried from the amount of pain inside my body (in front of several strangers and some colleagues, no less). I’ve cried to God about why He is allowing this much pain when I know He can take it away. And I’ve cried after a hard weekend of pain for my Pop in the midst of his cancer journey. Real talk: lots of tears. But there has been some laughter too. It’s just been a little harder to find.

In Romans 5:3-4 (NIV) it says: “We know that suffering produces perseverance; perseverance, character, and character, hope.”

I was reminded last week that suffering doesn’t just jump straight to hope. First it produces perseverance, and perseverances produces character, and then character produces hope. It’s a process. Being in suffering doesn’t automatically produce hope. Which is why it’s not always easy to laugh in the middle of suffering. Laughter can more easily be found with hope. They hang out together. And sometimes it takes a little while to get there.

So while laughter was a little harder to find, and the words of my prayers were fewer and more repetitive, I found solace in worship music on repeat in my home, in my car, in headphones on a plane. Recently though, this song, “Goodness of God” by Bethel, has been on repeat more than the rest as it brings me to tears more often then not- especially this lyric:

“And all my life You have been faithful. And all my life You have been so, so good. With every breath that I am able, oh I will sing of the goodness of God.”

What a difference between “all my life has been so, so good” and “all my life You have been so, so good.”

When I can’t find laughter, I seek for any kind of joy- and I’m telling you with every part of me- the only way I can find joy is because of Jesus. In the last week I can’t find a lot things that I can say have been so, so good. But my God is. And He has been present with me every time I’ve cried, and every time I’ve laughed. 

He always is. He’s always there.

Jesus, remind us of Your goodness. Help us persevere in the suffering, help us develop character, and help us find hope. May we never stop singing of Your goodness. And may we be known for giving the hope and joy that comes from You alone away to others who need it. And Jesus, may we laugh. Thank you for laughter in the middle of pain. But more than any of that- thank you for being there for every tear and every laugh. For being an ever-present God that holds us close in times of suffering. All my life You have been faithful. All my life you have been so, so good. With every breath that I am able, oh I will sing of the goodness of God. 

 

 

 

Hi,

This is an open letter to you. A letter to say that I know you are hurting. A letter to let you know that you are not alone. I see you trying your best and feeling like it’s not enough. I see you trying to shove down how much it hurts and feeling isolated by doing so. I see you trying to be so very brave, while you feel so weak. I know……I know.

I wanted you to know that while you feel weak, those around you, see you as brave. I know you don’t feel it- but let me tell you a secret: people think being brave means not crying, not having a bad day, or something about being tough; but that’s not what it means. No; brave is a choice. Every day when you decide to fight this- whether that looks like taking action or simply waking up- you are choosing to fight and that is choosing to be brave. I know it’s hard. I know some days feel so hard- you don’t know how you’ll ever get through this, and some days you don’t even want to try anymore. That’s why you are brave. When you don’t even want to – you’re doing it anyway. You probably will never see yourself as others see you- so just trust the people you love when they say you are brave.

I wanted you to know that I see your heart. I see you mad, sad, frustrated, confused, and hurt. And it’s okay to feel all those things. Suffering brings out a lot of raw emotions. It’s not comfortable- but it’s real. Choosing to hide it is not as simple as it sounds. Let yourself feel. Be honest with yourself. Be honest with the Lord. He can handle it. He wants to hear what you have to say. He wants to hear your cries, your thoughts, your voice. I have learned that pretending I’m okay when I’m not just makes me feel more alone. Tell the Lord. Tell your people. Be honest with yourself. No one expects you to just be okay with this. And no one thinks your faith is any less for being honest. Please trust me on that.

I wanted you to know that you are on a team. While no one on this team can take your place and fight for you- it is invaluable to understand the capabilities of this team. The people on your team are storming the heavens for you. But they want to help in other ways too. They want to listen, they want to do tangible things, they want to be there. Lean on your team. We were not meant to do life alone. I wish I learned this earlier in my suffering. I’m still learning it. But when you act like you don’t need your team- you’re not helping anyone and you’re letting pride get in the way. Suffering is humbling. So very, very humbling. And that’s not fun- but the faster you get on board with this, the faster you’ll see the beauty of this team. If you’re not there yet; if you’re not at a place where you can lean on this team because you recognize you need it- then do it for them– let your team help because they so desperately want to.  Just remember how you would want this to go if the roles were reversed. (ps. you might have to tell yourself this every time you say “yes” to help)

On the days where you can’t see a single good thing about this, I pray that you’ll remember that nothing that comes your way is something that the Lord is surprised about. That doesn’t have to make you feel any better- but I pray it reminds you that when you feel surprised by the twists and turns, the amount of hurt you feel, or where this has brought you- the Lord is not shaken or scrambling to figure out how to make this okay. This is something I have to remind myself regularly, “the Lord is not surprised by this.”

I feel urged to tell you not to waste this. That might sound ridiculous right now, but I’ve discovered along the way that there is a choice in how to handle suffering. One option is to stuff it and pretend it’s not there. Another is to let it be used to help someone else. I hate to tell you this, but this is not just your story.  This is the Lord’s. That means even if you would prefer to keep it to yourself because it’s vulnerable, you’re making a decision to not share of what the Lord is doing. By sharing your story, helping someone else in the journey, or even in the midst of your hardest nights praying over and over for those who are suffering too- you don’t let the suffering go to waste.  Choose to use this as a way to help those that other people simply cannot reach because they do not understand. You can reach them, pray for them, encourage them- because you are hurting too. Don’t let this go to waste.  It might have stolen something from you- but it has also given you a rare opportunity.

And, more than anything, I want you to know how loved you are. Oh goodness, how I know the feeling of “I didn’t see this coming” or “it wasn’t supposed to be like this,” “everything feels different,” “this is devastating” and “I don’t think I can do this.” I can’t tell you how this will end. I can’t tell you what’s coming next. I won’t tell you that everything is not different nor will I ever tell you this isn’t devastating. And I can’t tell you how to fight this. But I can tell you that you are not alone as you walk in the shadowlands. You are so fiercely loved by those who want to walk with you until those shadows disappear.

I just thought you should know.

With love, deep admiration, and  faith in the One who is in control and not surprised,
“Katie”

A young woman bravely walked up to me last week after I had given a talk. Her words she spoke were kind- but I knew they partly were just gateway words to be able to say what she really wanted to say. I know because I’ve done this before. I know because I’ve seen it done before. The next thing I knew she was telling me about the emotionally exhausting week she had just had. She told me about the peace she felt and she told me how her heart broke. “But really, I feel God’s peace. I guess it’s just still a little sad.” I took this near stranger’s hand and told her how it’s allowed to be both. You’re allowed to feel peace and still feel sad. They can co-exist. When I didn’t answer the way she clearly thought I was going to- she tried to challenge it a little. “No, see, I know what I’m sad about is something the Lord instructed me to do. My peace comes from knowing that the Lord guided me not to go down this road anymore. So I know it’s good.” But tears filled her eyes when she tried to convince herself me that she shouldn’t feel sad.

What she doesn’t know is how much I get this.
What she certainly does know is that I still believe they can co-exist.

I have a disease in my body that causes merciless suffering. I know what it feels like to be so sad but still have peace that God is in control. I also know what it feels like to feel angry at what feels like an injustice- and still rest in God’s faithfulness. Yes, I believe they can co-exist.

I believe that if I think they don’t co-exist, I’m fooling myself. Not God- He definitely knows every inch of my heart even when I don’t. If you were to read my prayer journal, even from just this morning you’d read cries of a broken heart- and seeing it end in a chorus of the song “King of My Heart.” David did this in the Psalms too. He modeled it, so I figure it’s okay. Let’s put it all out there. Let’s trust that God can handle our heart ache while we learn to lean in even more into the goodness and faithfulness of the Father. As we lean into His perfect peace.

And while you’re in the middle of the heartache, the suffering, the pain- I personally believe it becomes even more important to do so: to lean in. It’s the only way I know to survive it. To lean in.

I went back in for another round of infusion a month ago. Round 11. {Eleven!} I no longer can count them on my hands. Round eleven came in a November. The month I was born in. The month my pain began in. The month I was diagnosed in. The month (this year) that marked me being in pain for more of my life than not. It was a successful round, for which I’m so grateful, and my pain dropped to a “5” which, for me, is a good place to land.

I’m pretty sure that nearly every pain patient hates the pain scale. It’s really just supposed to be taken as a way doctors can understand us. It’s just supposed to be a tool for them to know how much we are able to tolerate or not tolerate the pain we feel and what kind of intervention needs to be done. But it ends up feeling like a pain patient’s whole life- that darn scale. Amateur pain patients do this thing where the doctor asks “rank your pain on a scale of one to ten” and they say something like “twelve.” (Don’t do this. The rest of us pain patients are judging you. The question was 1-10.) The reason it doesn’t work to say that (we get it- lots and lots of pain) is that what’s to say next time you won’t say 15 and keep getting higher and higher up on the number line? Sticking from 1-10 forces you to think through what number you want to communicate. It also means that in 14 years of pain, I’ve had to readjust my numbers many times as my pain increases. What once was an “8” is now a “5.” What once was a “5” is now a “3.” As you feel worse pain- you re-assess and re-assign your numbers. And for. the. love. you do not compare your pain or your numbers to other people’s numbers. You simply let the tool do its job. You let it communicate the amount of pain your body is in. I’ve never called any pain a 10. It bothers me when people decide for me that my pain is a 10. (note- please don’t ever do this) It can’t be. Not with a progressive pain disorder. I don’t actually think I’ll ever be at a point in my life where I’m comfortable calling it a 10. I can re-adjust the scale a million times and a 9 will always be able to be adjustable. But a 10 means nothing can be worse than this. It’s not adjustable. And if I’m being honest with myself- I know it can get worse than this.

I have learned that the emotions that come alongside of pain can also exist with peace. It sounds easier, cleaner, more straight forward and more poetic when written then it often feels when lived. I re-read my blogs a dozen times before posting to make sure what I have written is truly what I believe. Even still I have a vulnerability freak out the second I actually do post it because often it’s what God’s working on in my heart right then- and it doesn’t feel as “pretty” as it can sound. Sometimes the work or the process is beautiful- but it’s definitely not pretty.

You know what’s not pretty, but oh so real? Ugly crying in the hospital. Lying awake at night and asking every possible question of God that you really know deep down inside you won’t get answered this side of Heaven. Mourning normal. Comparing. Laying down expectations. Picking them up again to only have to lay them down again.  . . . .

Whatever it is that causes the pain- whether it’s financial stress, the news you didn’t see coming, fears about your marriage or your children, the inevitable but painful repercussions of broken people hurting people, the physical pain, the emotional pain, the unforeseen news, the loss of a baby, the loss of a relationship, the broken dream, or waking up (or having your husband, brother, father, grandfather, wake up) jaundice and going to bed with a cancer diagnosis…

I pray you don’t’ just believe in the co-existence of peace and pain but that you feel that peace that surpasses all understanding in the midst of your pain. That your life can be a testimony of God’s faithfulness in the midst of the fire. I pray that you feel God with you today in a rich and beautiful way that feels sacred. I believe that you can still sing of God’s goodness in the midst of your hard.

Even if that pain feels like an actual “ten.”

Cry the tears you feel coming. Scream the ache you feel deep inside you. And lean in. Lean so far in to who you know the Lord is and who He always will be: your peace. Your Wonderful Counselor, Mighty God, Everlasting Father, and Prince of Peace. (ref. Isaiah 9:6)

**Dear Family,

This is Abbie’s current favorite song. She played this song the day all this unfolded with Pop- only a little bit after dad got home from the hospital. I hadn’t fully paid attention to this song until then. And now it’s my anthem for Pop. It felt appropriate with this blog, written truly for you, to put it here. Love you all. Once again Abs, thanks for teaching me about faith by watching yours.  xo

And Mom-Mom and Pop- my heart couldn’t possibly be next to yours any more than it is right now.

I just recently got back from my favorite sabbath escape. One thing I love to do every sabbath retreat is reflect on the last twelve months. From last year’s sabbath retreat to the shore, to this year’s sabbath retreat in the cabin in the woods on a lake- I have had five infusions- two bad and three good. I also had my first two side-complications from these infusions in the last year- as well as an MRI, two CT scans, an EEG, a few tests, and a whole lot of blood work. On the flip side, I also had an incredible community rally around me for a fundraiser to help pay for medical expenses, an opportunity to help spread awareness, and another year of more chances to feel things besides pain- the hands of little ones tugging on me, hugs from loved ones, and the sand and ocean under my feet.

Among the few impactful things I learned and was reminded of on sabbath this year- this one is on the forefront of my mind: no matter how  I’m feeling- it is always a good idea to reflect on how good the Lord is. Speaking the truths of who He is can be so powerful. In a life full of so much change- the Lord does not. In a life full of things out of my control, I can trust the Lord is never surprised.

I don’t believe the Lord looks at me in pain and says, “yes, that’s good.” In fact, I often get stuck asking the Lord why He is not fixing my broken because I believe with my whole heart He has the power to fix it.

Going down that road -the road where I wonder why God is choosing “not yet” instead of “talitha koum” can be a dangerous one for me. I think it’s important to state it and sometimes to even feel big emotions about it. But if I’m not careful- this turns into a bad game of:

“Yeah, why hasn’t God healed my body yet?”….”Is God going to heal my body on this side of Heaven…ever?”….”Why does God choose to heal other peoples bodies and not mine?”….” What is God doing?”….”Is it a waste of my breath to even ask if He’s not going to do it?”

*Slam on breaks*

Why do our minds do that? I won’t speak for you; sorry. Why does my mind do that? No good comes from that. It’s a train of thought that knocks down faith instead of building it up.

I believe that God has the power to fix my broken. And yours. And your best friends.

I really do. That’s who I know my God to be.
So why doesn’t He just choose to heal us all….like yesterday?

I don’t know.

“Great, thanks Katie. Great blog.” – I know, hold on.

But here’s what I do know:

God never leaves us. (Deuteronomy 31:8)
God sees us. Really sees us. (Genesis 16:31)
God has not forgotten us. (Isaiah 59:1)
God will always be there for us. (Psalm 145:13
God has not stopped caring about us. (2 Corinthians 1:3-4)
God loves us with a love greater than anything. (1 John 4:8-10)
God is compassionate. (Psalm 116:5)
God knows every detail of what we are going through. (Matthew 10:30)
God is our strength. (Psalm 59:9)
God is approachable. (Hebrews 10:22)
God will get us through our broken. (Isaiah 64:4)
God is our peace and will continue to be our peace. (Isaiah 54:10)
God IS a healer. (Psalm 147:3)
God is good. (Nahum 1:7)

There’s more. A lot more. The Bible is filled with these truths of who God is.

Sometimes, even when we don’t even know that we can believe them, saying them over and over again- is enough. Declaring the truths of who God is- helps us fight our battles. It helps me remember who God is.  I have to trust that He’s very much in control with a plan (Jeremiah 49:11) and even though I think my plan of full healing today sounds best….I much rather follow the plan of God who is all of those things above and more all the time- then the plan of a woman who can’t get up in the morning without calling on the name of the Lord to help her weary body touch the ground.

Last night, as a church, we had a time of worship, story telling from a day of serving, and communion. It was beautiful. We ended with a song I’ve always loved since the first time I heard it. But it reached a deeper part of my soul yesterday, as I’ve been reflecting on who God is, even in the middle of my brokenness. It was an opportunity to declare it over and over again, “glory, glory, hallelujah, Jesus you are good.” (“Your Glory”- All Sons and Daughters. Click here)

My word for the year has been “sing.” A reminder to myself to sing of the goodness of the Father even when things around me don’t feel good. A reminder to “sing my way out” when I feel like I’m drowning in pain. This word has just been so perfect for this year. And here we are, in the middle of October, the end of the year is approaching and I’m still having reminders to sing of the goodness of the Father.

My prayer is you will too. My prayer is that you speak truths of who God is in the middle of whatever your “hard” is. It’s a game changer. It shifts the focus on what feels so hard to the only One who will help us out of the hard. It reminds us of what we know in the middle of all the unknowns. It declares truth – when we are weary and tired of fighting. And I believe, like the hushing of a parent quieting the cries of their child, it can sooth our souls.

Glory, glory, hallelujah-
Jesus, You are good.