Today is five weeks since I was discharged from the hospital after Round 6 of infusions. Once I’m actually in the hospital, it’s actually quite predictable. I’ll be admitted, and while someone documents the details of the most recent decline, someone else is trying (for what feels like an hour) to find a vein that will hold up just long enough until the PICC team can come get a midline in me. Then I wait for the medicine to come so the infusion can start- and once they turn it on, we titrate up on the medication and wait for relief to begin to come. Over the first twenty-four hours’ certain side effects will be brought on that make me more dependent on others for a lot of things. During the next several days the pain will get lower and lower- and usually lands somewhere around a “5” on the pain scale. There’s lots of rejoicing, lots of feeling, lots of happy tears, and always a “coffee cheers” on discharge day. Once they titrate me off of the medication, I return to a more independent, very grateful, Katie.

We aren’t naive. We say “good-bye” and “thank you” to everyone on staff who has helped me get to this pain level this time round- but we know we will be seeing them “soon”. Not one of us talk about that. It doesn’t feel necessary to go there, but it’s an unspoken look they give me of, “Enjoy each moment!” And we pray each round gives more moments in the in-between.

This is the other side of my life. And to be perfectly honest, each time they wheel me out, it’s a sobering experience- knowing that I was just wheeled in in excruciating pain- and now I get to leave a little better. Though this pain takes over my life…I am one of the ones who still gets to live a part of it on the other side of these walls. As much as I get frustrated that I have to go in so often….I do get to work. I get to chase after my dream job. And many in my situation don’t. So yes, it’s hard to have to go in and have an “other side of my life” but at least I get to come out and pretend for a little while- that my body isn’t failing me.

Something went very wrong this time.

This time I reached a “4.5” on the pain scale- which I’ve only hit once before, but still the lowest I’ve gotten. I was thrilled. We all were. I could feel the hands of loved ones. I could feel things beside pain. Which is always the weepiest thing for this girl who greatly appreciates physical touch. I was imagining what I could get done in the time in-between infusions. And I was ready to get home. They titrated me off over two days. The first night I went to bed so grateful for these results…and only a few hours later I was abruptly awoken to some of the most horrible physical pain I’ve ever felt. I could hardly call the nurse in time before vomiting from the amount of pain that was in my body. They put the medication all the way back up, undoing the titration- they called my mom-and we proceeded to wait for 24 hours for that pain to respond to the infusion and bring me back down to some sanity. In 24 hours- we’d get to Monday, when our full team would be back and could help brainstorm what happened. We just had to get to Monday.

The hours passed and though each step was definitely something, I was getting stuck between a “7 and 8” on the pain scale and I could not get passed it. I was trying hard to not be scared- but I’m not sure it appeared like that. Why isn’t it coming back down? What is happening?

Sunday’s montra became “Wait for Monday. The geniuses come back Monday.” Every time I’d feel so scared….”wait for Monday…”

When Monday came, not only was I not given a solution to bring the pain down- but I also found out that it wasn’t safe to leave me on the infusion any longer- and they had to titrate me off again. The pain team promised they would brainstorm what we were going to do- and made sure to let me know that this doesn’t mean I’m no longer a responder to these infusions because I had gotten to that 4.5. But, in the end, I was being sent home in too much pain. I was told that every hour someone would be in to titrate me down for the next two days, breaking only at night. And I prayed over and over again that God would do something each hour while the medicine was in me. It was an extremely long 48 hours. Monday provided no more hope than Sunday. In fact, arguably, I had more hope Sunday waiting for Monday.

I can’t write out for you what exactly took place in that hospital room when I was told they had to start titrating me off at 6:30 Monday morning. It’s too raw.

But what I can tell you is that God met me there in an intimate and beautiful way. And in the middle of my shock, fear, sadness, and uncertainty….I believe that God told me that I needed to communicate to the medical team taking care of me that I knew this wasn’t their fault and that I knew they were not doing this to me- that I need to do my part to help them be released from that feeling. And that I needed to tell them that this isn’t okay and that I’m grieving and they are going to need to give me space to grieve. And then it became quite evident to me that in the next 48 hours I needed to grieve with these two things: spiritual truth and space to wail.

My dad was with me when we got that devastating news. Typically, if he had said, “what do you need?” In the midst of devastation, I’m not sure that I would know- but I knew exactly what I needed, “spiritual truth and space to wail.” He asked me a great question, “What does that look like for you?” And God brought two people to my mind faster than I could think…who ultimately would be the best people to do that. In our time of grieving- with many loved ones praying that the Lord would bring the pain down more in the remaining hours of the infusion- the Lord kept our grieving hospital room intimate with only my parents and these two women that God brought to the scene. One who I felt would bring spiritual truth- and pretty much was only able to be in the room long enough to do just that with so many disruptions. So she left behind cards that were read to me over and over again in the hospital with verses and characteristics of the Lord. And one who, just after they stopped titrating for the night, came in, met me in my deepest pain and wailed with me in that dark hospital room. What an act of love.

I woke up the next morning with no change. And by the time they completed the titration and turned off the infusion-I was left at a 7. There was nothing to say….nothing to do. We all kind of just grieved. But I don’t think I will forget anytime soon, the moment when they turned the machine off….and my mom just climbed in the hospital bed with me, and held me- both crying…both very confused.

It was honestly traumatic.

The disease is aggressive, so we need to be more aggressive. I don’t know what that all means. But I know that the pain team has been meeting and strategizing, and since I’ve left the hospital we have connected, debriefed, brainstormed, and started two new medications until figuring out when they’ll do the next infusion to “try this again.” Which, honestly, used to be so hope-filled, knowing that my pain would be lessened. And now, it’s kind of scary.

I’m not okay right now. And that’s scary too. I’m grieving my pain being more aggressive. I’m getting frustrated with things being hard to do in this much pain like driving, socializing, working, serving. You guys, I couldn’t set the table for Thanksgiving without having to sit down after and recover. I don’t know what’s happening next- and I have to reign in my mind often (daily) from going too far down the road.

This time I left the hospital very differently. I left with more questions than answers. I left with so much fear. I left not sure how to go back to normal life with this much pain. I left not being sure how to be “normal” when I feel far from it. I was about to re-enter the other side of my life…the side I spend more time in…and I didn’t even know how to do it. The last 35 days I have woken up every single morning and said, “I’m going to need You to get me through this day because I cannot.” And every day He does. Though, most days, I feel like I’m pathetically crawling to the end. If I’m not at work, most likely I’m in bed. Sometimes I’m going to sleep for the night at 7 because my body literally cannot handle it. For the last 3 of the 5 weeks, I’ve not seen a number lower than an 8 on the pain scale.

But the Lord has been so good to me. That is truth. He is carrying me through each painful breath, each fear, each moment, each obstacle. He is showing up beautifully, and I’ve been journaling the ways that He has used so many people to remind me that He’s near. If you have sent a card, made a meal, helped financially, sat and listened to me, been the unexpected person who saw me cry that day and survived a potentially awkward moment, held my hair while puking from new medicine side effects, pointed me to a verse, song, podcast….thank you. God has used you. I’m being encouraged to not stress about getting thank you cards out fast which is against everything in me- but I’m so tired that it’s hard to. So please hear my deepest “thank you” and sincerely know it means so much to me.

I know the Lord is not surprised by this; though I am. I do not understand what is going on. But I know that He is not finished yet. I know He is going to use this for good.

One of my favorite lines recently has been, “Sometimes we sing something because we believe it, because we’re sure. Sometimes we sing something until we’re sure.” I heard it while listening to a live version of “King of My Heart.” This is said in the middle of the song, when you think it may be over…but it precedes about 4 minutes (I’m not exaggerating) of singing “You are good….you’re good….oh….You are good….you’re good…oh”

That’s my encouragement to you today. I know I’m not alone. Maybe you’re not an 8 on the pain scale because of RSD…but you might have another kind of goliath to face: financial stress, depression, medical monsters, anxiety, pain of miscarriage, pain of wanting to be married with babies while you’re feeling very single, caring for aging parents, caring for hurting children, trusting the Lord with your loved ones who are an ocean away, and that list hardly scratches the surface….

No matter what you face- whatever it is that feels too hard; join me in singing “You are good….you’re good….”either because you are sure it’s true….or sing it until you believe it’s true.

Though I know that the Lord is good, sometimes I sing it because I believe it- because I’m sure. And sometimes, when I’m throwing up from the pain being so bad or from new medication side effects, or sometimes when I don’t know how I’m going to get out of bed let alone do my day….I have to sing it until I’m reminded that I am in fact sure.

Nothing…absolutely nothing…feels good about this pain.
But the Lord is so good that I can trust Him despite the pain.
And you can too.
He is good. He’s good.

“Even to your old age and gray hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you.” Isaiah 46:4