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.