My last post was about the ways I’ve witnessed over this past year how God can bring life and hope and redemption to even our most broken situations. And thank you for rejoicing in those victories with me! Now I am asking you, my army who’s been there with me through this journey, to please PRAY.

Around the time I wrote that update, I started again having symptoms of intracranial hypertension (too much cerebrospinal fluid). The symptoms were severe, scary, and escalating quickly. I had an appointment with my neurosurgeon for my 3 month cervical fusion check-up, we discussed my symptoms, and as this has been an ongoing issue decided to do a diagnostic/therapeutic lumbar puncture to check my opening pressure and drain cerebrospinal fluid to give me temporary relief. Based on that we’d then put in a lumbar shunt to continuously drain excess CSF. I flew from DC to Massachusetts where my Mom was watching Spritz, we prayed over it and then I scheduled the lumbar puncture in one weeks time, miraculously lined up the necessary pre-op appointments and flew home to St Pete the next day for a quick work week and turn around.

Thursday Spritz and I got to the airport at 10am for an 11:30 flight. We sat on the plane for 2 hours due to hydraulic issues and then weather, and then were kicked off and told we had to wait for a new flight path that would avoid the storms but would add flight time…because our plane couldn’t fly over water! (Our state is a freaking peninsula!) During our wait a plane right next to us took off for DC that could in fact fly over water, but I wasn’t allowed on it because my bag was sitting on the plane right next to that one. We re-boarded our plane only to have the same hydraulic issues reappear. After another hour on the plane the flight was cancelled. I quickly booked the flight out that evening from my phone, and had I waited in line for the ticket agent it would have been sold out. We got on the evening flight, to again have hydraulic issues, then weather issues. All but southbound flights were cancelled. At 10:30pm after sitting on the plane for 3 hours our flight was cancelled and rescheduled for 9:30 am Friday morning. I had to be at the hospital in Maryland at 9 am but by hell or high water I was determined to make it! I booked a 5am flight to Baltimore, checked into the airport hotel for 4 hours and watched the sunrise at 40,000 feet the next morning. We took an Uber from the airport to the hospital and made it there at 8:30 am. Meanwhile my mom, my partner through every single step of this wild ride, had arrived in DC on time the afternoon before. She met me at the hospital, took Spritz (who had been a champ during our 12 hour day on planes, trains and automobiles) back to our air bnb, and then made it back to the hospital for my scheduled procedure time. So crisis averted, back in business!

A lot was riding on this procedure…a lot of symptoms I was having overlap with my other neck issues, and if this gave me relief that could mean prolonging my need for the next big fusion. It would also mean a huge increase in my quality of life. To be honest, I fought fear all week leading up to it. I kept thinking, “what if this is another dead end or doesn’t give me the clarity I need?” And kept having to go back to the promises I know…that perfect love casts out fear. That God has plans to prosper me and not to harm me, to give me hope and a future! And in my devotional was this verse, “When the Spirit of truth comes, he will guide you into all truth. He will not speak on his own but will tell you what he has heard. He will tell you about the future.” John 16:13

Last summer in a similar emergent situation of escalating intracranial hypertension symptoms, I did a similar one week turnaround from DC to Baltimore after my surgeon found some concerning masses at the base of my skull and wanted to rule out arteriovenous malformation or jugular compression as a cause of my intracranial hypertension. I had a diagnostic cerebral arteriogram and angiogram, where they ran catheters through the veins and arteries in my legs up to my brain and injected contrast dye while taking x-rays of the veins and arteries in my brain, head and neck. This time looking for a blockage in my internal jugular vein as the culprit, and a stent would be the solution. Very similarly this route would have vastly simplified future treatments and had potential to improve a vast amount of symptoms. That study showed no blockage, but severe veinous congestion in my head, and the ramification of that is still unclear. I remember waking up that next morning feeing really beat up (the procedure felt like hot electric shocks) and really defeated, and was crying out to God as to why. Why had I gone through that for nothing, why couldn’t even one step of treating my conditions be easy or clear? And I sat there having one big pitty party in my hotel room. But then I turned up my praise music and got into his Word and read the verses that I can trust that when His “ways” are not my “ways,” this is only because they are “higher than my ways” (Isaiah 54:9) and then from Psalm 20 that, “some trust in chariots and some trust in horses but we trust in the name of the Lord our God.”

In that moment God so loudly said to me “it will be Me who heals you!” And then a friend texted me encouragement to always remember that I’m in the hands of the Great Physician! I wrote in my journal that morning, “There is only one Healer, and I call him Father! Once again God is surrounding me with signs of His presence. He’s ministering to me right where I am…in my angst, in my frustration, in my fear, in my pain. He’s saying ‘I’m right here. Take my hand, see my scars, and trust me.’” I have gone back to what I heard God say to me so many times…and I believe it, and at times have even claimed it as done…but have also really wondered what that actually means? Do I just stop pursuing any medical treatment? How will God himself heal me?

So back to last week…leading up to the lumbar puncture…amidst the other fears I had, the funny thing is I had no fear about the actual procedure. And at the hospital that day I realized why. My surgeon has prayed over me before every surgery, and that day he prayed that I’d be filled with Gods Spirit, that God would guide his hands and that God would heal me. My surgeon knows that his skill, his knowledge, his ability to heal is only because of his God working through him. And that it will be God who heals me!

My surgeon drained 20 ml of CSF from my lumbar spine and then took blood from an artery in my wrist and injected the area around the opening of the dura to prevent a CSF leak. Everything went great (aside from a blown IV, 4 misses and some very bruised arms and hands). I woke up feeling improvement of many symptoms and was so relieved and hopeful. I had pain and tightness in my legs and sacrum but that was just from the added pressure on the nerves. My opening pressure was 18, 15 is normal is 20 is clinically high, so the plan was to monitor symptoms, which were up and down all weekend and hard to gauge. I felt like I was back in the same place of uncertainty as after my arteriogram in Baltimore, but God kept giving me comfort from his Word. One morning as my thoughts were spiraling, I started quoting Psalm 139 and then it was also part of my devotional that day…which I’ve found happens quite often when we take time to listen to that quiet, gently voice of the Spirit. “You made all the delicate, inner parts of my body and knit me together in my mother’s womb. Thank you for making me so wonderfully complex! Your workmanship is marvelous—how well I know it.”

I was back home Monday and back to work on Tuesday and feeling pretty great. Wednesday, all hell broke loose. I woke up with a return of a severe headache, legs that felt like all the muscles had been torn, and extreme pain in the area where my tailbone used to be (I had two surgeries to remove my tailbone after an injury but have had pain there for 20 years because the culprit was actually the tethering of my spinal cord that I had surgery on 2 years ago.) My surgeon assured me that nothing was wrong from the procedure, and that the pain was from the added pressure on nerves that were already highly traumatized and sensitive, but we were both exasperated. The pain continued to get worse, and by Friday I was in the most intense pain I’ve ever been in…even more than after any of the 8 surgeries I’ve had! I talked to my surgeon again on Saturday, he prescribed me a drug used to treat nerve pain and seizures, and a med for nerve pain. The medications didn’t interact well with each other or with me, I was having unbearable side effects with minimal relief and I had to go off of them completely. Monday I made the very difficult decision to cancel my clients for the week, and moved my scheduled flight to Massachusetts from Thursday to Tuesday. I didn’t know how I was going to keep making it through each day, through meetings at the clinic, and how I was going to pack, let alone get on a plane, but I know that God is strongest in our weakest, and I kept thanking Him for yet another opportunity to show his love and His faithfulness to me. And He kept speaking back through his word…“and I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns.” Philippians 1:6

Tuesday morning came, I had barely slept due to pain and I was dizzy, had a pounding headache and was sick to my stomach due to residual side effects of the medications. I was teetering on cancelling my flight, but gave it a few minutes. My verse of the day was “wait patiently for the Lord. Be brave and courageous, yes wait patiently for the Lord!” Then I put on praise music and started singing along, and almost immediately I felt a little bit better. And so I kept singing…while I showered, while I packed, while I waited. And my God, my healer, showed up like he always does. Because when we worship, we put God in His rightful place as God, bowing to His sovereignty and declaring our trust in His goodness and love. It doesn’t always mean that our situation will change, but our mindset alway will. And I have seen time and time again that in those moments of surrender, God speaks, and God moves, and God brings breakthrough.

The songs on my playlist that morning…

“This is how I fight my battles…it may look like I’m surrounded but I’m surrounded by you”

“I’m gonna see a victory, for the battle belongs to the Lord”

“Because he lives, I can face tomorrow”

“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”

“But the Voice of Truth tells me a different story, the Voice of Truth says, “Do not be afraid!” And the Voice of Truth says, “This is for My glory” Out of all the voices calling out to me, I will choose to listen and believe the Voice of Truth”

And that last one is what I’ve been claiming all along…that God will use this trial for my good, and for His glory.

I made it to my moms in Chicopee, with wheelchair assistance at the airports and several shed tears from how bad the pain was. That night was the worst yet…I now know why women scream during contractions and if I never have kids, I think I can still say I’ve been through labor pains. I have come to my breaking point. Today as I write this, I am in shear agony. Moving in any way causes stabbing pains and I can only take a few steps without going into spasms. It’s impossible to find any comfortable position. My surgeon thinks that my intracranial pressure is high again, and that is further irritating the sacral nerves. I’m going on a trial run of a medication that will lower my CSF pressure, and if that helps then he will put in a lumbar shunt. And thus why I have asked you to pray. I am weak, I am weary, and in my own strength I can’t take this pain any longer. But my God shines in our weakness…and I know that with every fiber of my being. Please pray for renewed strength, relief of pain, for a clear path forward, and for God to heal me.