These last few weeks of my life have been so hard. I’m bed bound most of the time and even with the pain meds I’m still feeling a lot of pain. I’m mostly lying in bed. Isla moved out of her room so I could be on the first floor and not have to confront the stairs. I keep falling and I’m relying on my cane.
My mom got me some sketch supplies and watercolors cause I was going crazy just laying in bed. I got a lap desk off of amazon that’s adjustable, so I don’t have to look down.
I am not supposed to move my head and neck much. I can do small “princess nods”, but I can’t see the floor when I walk or twist my neck and body. Using the cane has been so helpful with my balance and fatigue.
I’ve been out of the house a few times for medical appointments and once for a dinner. I go on car rides to the store or pharmacy and wait in the car, just to get out of the house. It takes a lot out of me.
My fatigue is high and my energy is very low. I have a hard time standing for too long. Sometime, my head gets heavy and I need to lay it down or my vision goes black and I feel like I’m about to faint. I’m supposed to take it easy, but still walk a little. As soon as I start moving, the pain and symptoms definitely get worse.
My insomnia is worse than ever. It takes forever to find a comfortable position to sleep with pressure on my neck and head. I’m constantly waking up to adjust the pillows and blankets, get ice packs and take my pain meds. I’ve also been having a lot of nightmares that are making it harder.
Isla comes and sits with me, but she always makes me laugh so hard I’m scared I’m gonna tear some stitches.
We’re home now and made it through surgery, but in a lot of ways we are still in the thick of it.
I’ve had several doctor’s appointments and there’s been a ton of pharmacy runs.
The insurance is pushing back a lot on some of my medications.
Over the weekend, there was a mess up with the prescriptions and we thought we had more refills than we did. The bottle had multiple refills written on it but the pharmacy, said there system can’t process that.
I had to call my doctor and because it was the weekend they said that it would be better for me to just go to the ER than go through the on call doctor. Which we did. They gave me just enough to get to Monday to talk with my doctor.
My doctor did everything he could on his end, and it got sent to insurance who is denying it.
We are all stuck in this cycle of it goes to my doctor, to the pharmacy, then to insurance and the back again. Please pray that this all gets sorted out.
Just a few more weeks and I’ll be through the worst of it and on to the next chapter of healing and working with a physical therapist. I also be able to wash my hair with something other than baby shampoo.
Thanks for all the messages and checking in with me. Sometimes it takes me awhile to respond, but it really does encourage me. 💜
I’m home now since Thursday night. Thank you all for the constant prayers and the steady support and love.
I’m exhausted and have been sleeping most of the days away. My body physically feels worn. It’s hard to move, but I’m making myself go up a flight of stairs and just want to walk around. Some days are easier than others. If I lay still with an ice pack and some meds I can manage. It’s the moving around part that’s hard.
Isla has been so gracious and is letting me sleep in her room in the lowest level of the house, my room is on the highest floor. Which freaked out everyone (including the medical team).
A few family and friends have briefly stopped by, but I am mostly sleeping. I don’t actually remember all the details of my first surgery, but I really don’t remember sleeping like this.
I have to wash my hair and incision every day with this baby wash type thing. One of the nurses told me to be prepared that I am going to lose some hair in the coming months from the medication and my body being under stress. That happened last time, so I’m ready for that. I already cut my hair shorter so it’s easier to manage and grow out.
I saw my primary care doctor yesterday. My incision is a little swollen, but we’ll just watch it for now.
I made a playlist of everyone’s suggestions and I play it all through the night. It’s very eclectic and lots of it is new to me and gives me lots to think about.
Sorry for the late explanation. I needed some time to calm down, restart and get and travel home.
Very long complex story, but I was readmitted because i had not had a bowl movement since before surgery. They released me before that happened saying it would at home. It never did. We called and they said if it was painful to go in, which is was so we did. We thought it would be something they took care of in the ER and we would be out that night. They came back in and said because of all the stitching neurosurgery wanted me readmitted for observation.
So, I was readmitted a scans showed a Seroma (fluid collection at the surgery site) that the ER was concerned about. The surgeon later told me that it’s very common and they would be surprised not to have one. That the ER always makes a big deal out of it.
During my 23 hour stay, I was not fed or given any fluids through an IV or a cup of water. Whenever I hit the call light button it was ignored. The doctor came in for around 3 mins and said all my problems were because I have an addiction to pain meds. (The one I just started taking after brain surgery on Monday). The only thing this doctor did was cancel ALL my meds for 10 hours. I went without pain meds other than Tylenol. There were a few medications the nurses even told me that had no idea what those were for and I had to explain how during brain surgery they stopped my CSF flow and I lost of CSF fluid so they filled me back up with saline and it takes time for the to become CSF, so that medication they stopped was to prevent the headaches that go with that. I asked for my meds several times and was always told to just wait for them to ask the doctor. They also asked the doctor if I could have a small bowl of oatmeal and an IV for hydration. They finally came back and said they could see the doctor was reading their messages, but not responding. They said we could fire her and get a new doctor, so I formally said that’s what I wanted to do. Another couple hours and they come back to say, I can’t fire her because she is the only doctor working that floor right now. They also let it slip that the doctor had also gone to empathy training before.
It gets to be a whole mess of meds being ordered and then canceled “this” is gonna happen but nothing does. I am in so much physical pain, starving, dehydrated and I don’t feel safe. I could write a whole post on medical gaslighting. It’s real and dangerous. I felt scared and so I stood out of my hospital bed and started taking off all the monitors and got dressed. I told my mom I wasn’t safe and was leaving. That I would follow up with my primary care back home who I love. There was no clear reason why I was in the hospital. I had already met my goal and was declining from no food or water. The nurses kept wanting me to stay for the next shift because there would be a new doctor and I could be reevaluated. They convinced me to have a meal and to just wait for a few hours or a new doctor. I did. Only to find out right before it would be the same doctor. I think they wanted me to stay because once you hit midnight again the hospital can charge for another full day even if I’m only there for a few minutes after midnight.
The doctor finally started sending in meds, but smaller doses than I take (according to the plan created by my neurosurgery team). I told my mom I was done with this pettiness and just wanted to go home where I know my parents can take care of me. I was physically not in that much pain and suffering at home.
One of the nurses I love checked me out before midnight and we got the number to call about that doctor. When we go back in two months for the follow up appointment I might want to follow up with what happened in person cause that was wrong. It took days to get my pain manageable again. I also have other conditions like POTS and fibromyalgia that were caused to flare because of the lack of care I was receiving. I have to be on it with my health. With the foods I eat, hydration and medication. Not even mentioning brain surgery. I was denied all of that under this doctor’s “care”.
I’m sorry it’s taken a couple days to update about this. I’ve had nightmares about it and it’s still real upsetting me to think or talk about it.
I can feel my strength getting weaker. My heart getting heavier. Every day is getting harder. I’m having to use a cane now to help with my balance and lightheadedness. There is so much breaking my heart from my illness and physical pain and the impact this illness has had on relationships.
Life’s just hard. I’m trying to take it day by day, but that sometimes turns to hour by hour. The ground is feeling more unsteady with every step forward.
Sometimes I feel so shaken and fragile as each day brings me closer to the brain surgery. I’m feeling so weary and tired. I wish all of this was already behind me.
(Here’s an inside look into how my prayer goes sometimes)
I was praying earlier about my struggle and questioned why this was happening to me again. Why does it feel worse than before? I asked God to give me the strength I don’t have and to carry me now because I’m too tired. I told God I felt like I was only hanging on by a thread. That there’s no way out for me.
I thought about that phrase “hanging by a thread” for a second and began to imagine a thread and the image in my head took on the old hem of a tattered robe.
The woman in the Bible who bled for 12 years and touched the robe of Jesus was my first thought.
Honestly, that story has become a hard one for me to hear and read. There has been some unintentional misuse of that story towards me. I had someone I know compare me to the woman. They told me that if I just had more faith and decided to reach out and touch Jesus’ robe, I would be healed.
These last few years, I have had many people tell me things like that. If I just had more faith, prayed more, or confessed my sin I would be healed. Someone even asked me what my parent’s unconfessed sin was.
I slowly began to realize I felt like the woman who was isolated from her community and church. She was known for her illness. It’s been really hard and I struggle sometimes to be in church or with a group of believers. I feel insecure and tainted somehow. I feel like everyone knows my prayers haven’t been answered and I’m marked. I know this is irrational thinking, but the insecurity, feeling different from my peers, and not having a “normal” young adult life
It is easy for me in the moment when these things are being said to brush it off, but with my insomnia and the fatigue at night, the lies begin to distort the truth.
I lie awake and wonder why has God not answered my prayers. Did I do something wrong? Am I not enough as I am?
I read a book by Costi Hinn called, More Than a Healer. I loved how he described that way of thinking. This is my summary, but he describes that way of thinking as making God’s love transactional. That we have to do or say the right things for Him to bless and take care of us.
The one thing above all I have learned from this experience is my faith is not built on anything other than the tender mercies and love of Jesus. We are not promised a life free of worries and pain, but we are promised the unconditional, never-ending love of God that surpasses all understanding.
I find myself avoiding the story of the woman who touched the robe of Jesus because it would make me feel angry and confused about why healing hasn’t come for me. I don’t know and I may never know. Full healing may never come for me on this side of heaven, but I know it will come. I have a promise of a future with a new body and no more pain. A place with no more tears and heartbreak.
When I was praying about having on by a thread and then thought of the woman and the robe, this time I thought of Jesus’ robe tattered and worn with threads hanging off the bottom. He was described as a man of sorrow. He carried the sorrows of the world. My sorrows.
I realized that yes, I am hanging on by a thread. The thread of the robe. The robe of the one who will lead me to life everlasting.
The Book of Job is one of my favorite books of the Bible. One of my favorite passages of scripture is after all of Job’s questioning and debating, God answers him through a whirlwind. He asks Job a series of questions showing the full awesome power of God and the smallness of man. In God’s love, he restores Job’s life. Job ends by saying,
“I have heard of You before, but now I have seen You with my own eyes.”
I love concerts, the planning and anticipation. Going to events is different for me now. I have to time it and plan for days of rest before and after the event. At a concert, I am trying to be fully present in the moment, but at the same time tuned into my symptoms and trying to manage them, so I can be there. I have polaroid sunglasses that my physical therapist recommended I wear, even indoors, to help with overstimulation. Often, I have to leave and find a quiet place to take a break.
Isla and my mom are my music buddies. We always share new music and talk through everything about the songs. One of our favorite bands is We Are Messengers. We’ve seen them in concert several times and love them. Their songs were on my playlist I listened to in the hospital after my first brain surgery.
They came to Oregon back in October, so Isla and did some dog sitting to get tickets.
The week before the concert was when the first MRI came back with the findings of a fluid collection. I was scheduled for a neurosurgery appointment, but still had to wait a few weeks. I was already feeling very sick at that point and could tell my physical symptoms were getting worse.
I was disappointed that I felt so sad and heavy during this concert that we had all been waiting for. I don’t go to many big events like that, so it was a big deal. A lot of planning of symptom management and coping went into this. My doctor says it’s good for me to have an event or something to look forward to that will help keep my mind occupied.
I was so upset that to have this MRI hanging over me the whole night. I always have this feeling of wanting to be fully present and not miss anything, but I feel like I’m always able to be fully in the moment. I think that comes from losing and missing out on so much because of my illness.
It was an amazing concert and we had so much fun. There were a few times I had to sit down and close my eyes. I popped an instant ice bag on the back of my neck to help calm some symptoms that helped. They played one of my favorite songs, Come What May. But standing up and singing “come what may” while you’re waiting on an appointment with a neurosurgeon to discuss a collection of fluid in your brain, was easily the scariest moment I have ever experienced in worship.
I couldn’t sing it and I felt so angry. Angry with my life, for the life I lost, the life I have with this illness and how unclear and scary the future seemed. This is not the life I ever imagined for myself and there’s times I resent it. I resent my illness and the struggles it brings both physically and in relationships to with people who are close to me. It’s so isolating.
I wrestled with God so much during that song. I think I was angry with Him too for how heavy everything felt and how I can never see a stopping point for this pain and struggle. Angry with how abandoned I felt. I was also angry at myself for not wanting to sing the phrase “come what may”. It was just too real and too scary. I kept thinking to myself can I do that sing that with sincerity and I am dreading my future.
I remember pleading with God that I wanted nothing more coming my way and begging for a break and for some relief. To let things be calm for a little while so l could feel like I wasn’t constantly barely keeping my head above the water, about to go under any moment.
I remember during this song feeling a heavy foreboding feeling sinking into me and I just knew something was wrong. Something was wrong with my body. I knew then the MRI scan was something more serious than I wanted it to be and that something was coming. In the middle of the song, I felt an overwhelming panic and despair, I dropped into my seat and wept. My mom and sister sat with me and we prayed together.
On the way home we talked about the concert and that moment. I explained how that was one of my favorite songs, and my thoughts in that moment. It’s easy to sing songs like that when you feel far removed from trials, but it’s different when hardships they feel like they’re about to drop on you at any moment and crush you.
Isla in the back seat quietly says, “it doesn’t change the meaning of the song. The truth is still the same.” She’s right of course, but I have struggled with that song ever since that night. It honestly made me feel angry and restless. I didn’t want to be confronted and think about the possibilities and questions it brought up. The big one was if my faith strong enough to be able to proudly and fiercely say to God, “come what may” knowing that I was probably up against another brain surgery and brutal recovery.
I think I was feeling guilty for my faith feeling worn and lacking. I know that God is perfect in His love and would be faithful to me, but it all felt like too much. I didn’t want any more pain and suffering. I want my life before all of this illness back.
A few weeks after that concert, is when I found out that the fluid collection is caused by a leak in my dura (the inside lining of your brain) and is still actively leaking and slightly growing. There’s scar tissue, and decreased CSF flow, which could be caused by the scaring or the fluid, possibly both. This is why I feel so sick and have developing mobility issues. I’m using a cane now.
I heard “Come What May” on the radio a few days ago, right before we left home to fly to Colorado for surgery. My family was in the car, so we listened to it.
This time though I heard it differently. The part of the song that I heard the loudest was “you’re still my rock, my hope remains, I rest in the arms of Jesus. Come what may.” The truth of that sank deep.
He’s my rock in this time of suffering. There is nothing I can do to change this situation. I can’t stop the need for brain surgery or cure this incurable condition, and the changes and new symptoms, God does not change. God’s love and faithfulness to me has nothing to do with any of my abilities or lack of, it has nothing to do with my fears and the endless questions of what if’s. My hope is in Him and Him alone. He is the same on the mountain tops as he is in the valleys.
We are now for CO for me to have my revision brain surgery TOMORROW. The surgery is to remove the fluid, scar tissue, and part of it is exploratory to see exactly where the leak is and what is going on and causing the blockage.
Please pray for me. Pray for my family. It’s not my first brain surgery, so we know in some ways what to expect, which is terrifying, but there is still so much unknown. I feel scared and dread for what’s coming, but also hopeful that this will be that last surgery and bring some physical healing and improve my quality of life.
So, while this is not at all what I would have chosen for my life and I’m scared, and don’t know what the future holds. I can say that God is still good to me. I see his tender mercies and His love for me.
Sometimes sorrow is the door to peace
Sometimes heartache is the gift I need
You’re faithful, faithful
In all things
In every high, in every low
On mountaintops, down broken roads
You’re still my rock, my hope remains
I’ll rest in the arms of Jesus
Come what may “
Thank you all for your continued support and faithful love and prayers.
Weathering Chiari 