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.