Immeasurably More

3.5 years ago, I remember sitting in my quiet office working on editing photos and answering emails. It was an unremarkable day, nothing out of the ordinary had happened until I heard a sound. At first I wasn’t even sure what the noise was. The wind? A cat rustling around in a closet? Water?

Whoosh. Whoosh. Whoosh.

I sat still. Held my breath. There is was again. Whoosh. Whoosh. It took a few minutes to realize the sound was coming from inside my own head. Like it was inside my ear or something. Like something was rhythmically whooshing past my ear, or inside my ear. I looked in the mirror to see if my ear looked different or swollen. Nothing. It looked perfectly normal.

A week later, the noise was still there. I saw my doctor and she looked at my eardrum to see if maybe it was a weird ear infection. “Your ear looks perfectly healthy,” she said. “Try a warm compress and ibuprofen,” she said. Ah, if only it had been that easy.

What resulted from the whooshing in my ear was months of CT scans, MRIs, cancer scares, MRVs, blood tests, hearing tests, neurologists and ultimately a diagnosis of Superior Canal Dehiscence Syndrome. SCDS is essentially when a small balance canal under your brain, the Superior Canal, wears away or develops a hole in it and begins to cause you all sorts of issues. In time, more symptoms developed; chronic vertigo, extreme sensitivity to sound, ear pain/fullness, imbalance, coordination issues, brain fog and eventually brain surgery out at UCLA. The vertigo and imbalance were by far the most debilitating symptoms. They made dealing with a little whooshing in my ear seem like a piece of cake. I remember waking up from surgery and immediately noticing that the vertigo was gone (Hallelujah!) but the pulsing in my ear was still there. bc347-10646965_10206248574315767_3820058040828197190_n

Weeks after surgery, my surgeon told me that the pulsing was just due to swelling and that it would certainly go away since the surgery was successful. After all, surgery resolved all of my other symptoms, it should resolve the whooshing too. I waited and I waited. Months went by and the noise remained. Years went by and the noise remained. This summer, the noise got so loud that I began to lose my hearing and go deaf in my right ear.

Eventually I saw my local neurotologist again and asked to read over my CT and MRIs again to see if anything had been missed. Indeed something had been missed. A tiny bone called the Sigmoid Sinus Plate was missing. Worn away, just like the Superior Canal bone had. There is a large vein right next to the Sigmoid Sinus plate so the noise I was hearing was blood flowing through my vein. We knew this meant another surgery was in my future. David and I went out to UCLA to confer with my first surgeon and he agreed that the Sigmoid Sinus plate was a potential cause for the noise that I continued to hear. He urged me to move forward with surgery.

Surgery was last Tuesday and I got to stay in Colorado this time, yay! In the weeks before surgery, I was calm and confident. On the morning of surgery, that all went flying out the window. Fear and anxiety crept up and pestered me the entire time I was in pre-op. I made David pray a dozen times over me and we continually read Scripture together which was my only source of comfort. My primary fear was that this second surgery might interfere with the first. That it would knock loose my bone graft and I would wake up with vertigo all over again. Thankfully the anesthesiologist swooped in and doped me up before I had a chance to back out and run to the car. 😉

Surgery commenced and before I knew it, I was in the post-op recovery room. I sat still for a long time and just listened. There was absolutely nothing to listen to. There was no pulsing, no noise, no whooshing. Quiet. Peace. Silence.

Before I had surgery, I heard that noise for 1,191 days. That’s 123 million times that I heard the whoosh in my ear. 123 million! It’s amazing I didn’t go insane.

I have now gone 1 full week without hearing anything in my ear other than fluid due to swelling and inflammation. It has been utterly quiet and utterly wonderful. Happy doesn’t even begin to describe how I feel. I am absolutely overjoyed. God is so good.

My recovery has been a breeze this time around. Even though I still had a craniotomy, they didn’t mess with my balance canals so my balance is great, my thinking and cognition is clear, I can concentrate and focus (it’s amazing what your brain can do when it isn’t subjected to hearing it’s own heartbeat all day long) and my energy is coming back. The only thing I’m struggling with is pain and my ear being suuuuper clogged. It gets worse as evening approaches but it’s getting a bit better as the days go by. I should be back to driving soon and living my normal daily life.

I am so SO glad that I didn’t allow fear to stop me from having this surgery. It was so tempting to think “I’ve come this far, I don’t want to push my luck” and back out of surgery. That fear could have prevented me from knowing the beautiful silence I know right now.

I think sometimes suffering can give us a bit of PTSD and we become quite risk-adverse. We don’t want to push our luck, take a risk or go out on a limb. Because what if that limb breaks? What if we fall to the ground? Those what-ifs can sideline us. Here’s the thing though – – – hard things are going to happen regardless. I could hit my head tomorrow and have my vertigo and the whooshing noise return instantly. We can’t insulate ourselves, stay away from all risk and hope that nothing bad happens to us. That’s almost a guarantee that something bad will happen! God isn’t going to reward us for playing it safe all the time. So every now and then we have to shake off the fear and step into the unknown. Who knows what blessings await! God is able to do immeasurably more than we can think, dream or imagine.Photo Nov 13, 10 32 15 AM

 

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Healing: 1 Year

Last year on Easter, I was sitting in the neuroICU at UCLA. My goodness time has gone by so fast! I can’t believe it has been a full year since my surgery. During my final post-op with my neurosurgeons, they said, “expect to feel better in 8-12 weeks….expect a significant improvement at 6 months….and expect full healing to take 12 months.” Here I am at 12 months!

SCDS is a degenerative syndrome. There is no cure for it. Surgery doesn’t make everything all better. You can’t just go back to normal again. Surgery isn’t about fixing things and getting back to life as usual, it’s about trying to make sure nothing gets worse. Big difference.

As I have gotten further into my recovery, I began to notice that it was hard to tell where my SCDS symptoms ended and brain surgery side-effects began or when healing ends and the “new normal” begins. Lines blur and all I know is that things are different now. Good, but different.

I write this as a person who is thankful to have received the help that I have from surgery, but who is also very much struggling to accept the idea that the “normal” I used to know will probably never return. There is a mourning over the loss of what used to be, and likely will never be again. That’s a big deal. Anyone who has been sidelined with a chronic condition will resonate with this (fellow infertility sisters perhaps?).

After all the dust has settled, I have realized that a few things linger. These are things that have not changed much over the last 12 months. They’re here, probably to stay. And I’m slowly making peace with that. Some of them are SCDS symptoms that just never fully resolved and some of them are probably due to the surgery itself.

-Barometric Pressure induced headaches, dizziness & cognitive disorientation. Bottom line, I never feel well when storms are approaching or leaving the area. In Colorado, this happens several times per week, if not several times per day haha!
-Cognitive disorientation in high stimulation environments

-Difficulty with short term memory, focus and concentration
-Nerve Pain and numbness
-Low-grade headaches 5-6 days/week
This list of things that remain is far better than what I was dealing with before surgery, so I will happily accept them as part of my new normal. And you never know, some things may improve in the future, like the headaches now that I am on the Migraine Diet (I’ve gone 7 days without a headache so far! May be coincidence…may be the diet actually working, too early to tell). And if we ever move to a place with no barometric pressure changes (Honolulu is #1 on the list haha!) then I will most certainly feel better. 

    Recovering from this whole experience has had it’s ups and downs. It’s been a long year full of tears, slow walks, frustration, gratitude, struggle, relearning things and adopting to a new way of life. I don’t have a story where I can say “Look at me! I’m 110% better now!” But I can say “I am grateful for the healing work God has done in my life and I am slowly learning to accept and embrace my limitations while praising God for bringing me this far, which is much further than I was a year ago. Amen and Amen!”

    David and I took a quite trip to the mountains to celebrate this milestone and to also celebrate the fact that we finally have a house under contract! Wooo! We booked a last minute condo on the river just outside of Rocky Mountain National Park. We spent our time lounging around, fishing, sitting in the sunshine, eating good food, hiking and looking at wildlife. It was a great way to get away and celebrate together all that God has done for us.


    S l o w e r

    We’ll also call this post my 6 month post-op report. Hard to believe it’s been 6 months since I had surgery to repair a tiny broken bone, deep in my skull, underneath my brain. Some days it feels like forever ago and some days (like today) it feels like it just happened. Being here, at 6 months post-op has brought with it joys and challenges.

    I met with my local neurotologist in Denver who was blown away by all my progress. Based on my hearing and balance tests and the normal results from my latest spinal tap, he officially said I didn’t need to keep seeing him (unless of course, I experience seizures, double vision or migraines..all things to watch out for due to the cysts on my brain). Hallelujiah! So as of Sept. 1st, I am DONE with surgery, neurologists, testing, bills, appointments, spinal taps, follow-ups and pretty much everything medically related to SCDS. YAAAAAY! 🙂 What a massive relief to have all of that stuff over and done with. It’s been a l o o o o  o n g 15 months full of medical stuff and I can finally see the light at the end of the tunnel, praise God!

    Along with that news, comes the fact that I just feel better. I know I say this with each month that has gone by, but I just feel so much better. I’ve made tons of progress in 6 months and I’m so grateful that my progress has been steady and uneventful for the most part. I’m still a part of a SCDS support group and there are many people who had surgery around the same time as me, who are deaf in one ear, developed infections, developed spinal fluid leaks, still struggle with vertigo and some who feel worse now than before surgery. Yikes. It makes me grateful for my healing journey. What I went through is not a easy thing, not something you can bounce back from every time. So I am very grateful!

    I think that since I got that clean bill of health and I also started to really feel better around the same time, I sort of took off at 90mph. I went hiking, did a 4000 mile road trip, photographed a gazillion elopements, went to Aspen for a week, dinner with friends, had many late nights editing 25,000 photos (not an exaggeration!), trips to the mountains, more photo shoots, I started 3 Bible studies, started class at Seminary, grocery store trips, dry cleaning, trips to Denver, errands galore!!

    And suddenly, I didn’t feel so great anymore.

    The past 2 weeks I have just felt really “off.” I’ve had a few dizzy spells, I’ve been exhausted, I’ve had some ear and incision pain, headaches, restless night’s sleep.  I’ve had several moments of confusion where I can’t understand something that David is explaining to me (scary). I feel like I took a solid 20 steps backwards. I was pretty baffled by it for a while. Like, why are some of my symptoms returning? Why do I not feel well? What. The. Heck.

    And then I realized…oh yeah, I’m still recovering from surgery. It’s a 12 month recovery period. Not a 6 month recovery period. I am not done healing. And healing requires rest. It requires a slower pace of life. It requires walking (honestly, I had not gone on one single physical therapy walk in 7 weeks…no wonder I was getting dizzy!!). It requires little stress and low stimulation. And have I been doing ANY of that? Nope. So as of today, that changes. I have one photoshoot left and then my off-season begins and I can slow things down and be more intentional about giving myself the space to heal.

    I guess this is the downside of trying to run a business and heal from brain surgery. I had this fear that my business was going to fail this year since I wasn’t able to operate it “normally”. That if we weren’t out there crushing it every week, we would become obsolete. And so every inquiry I received, I allowed Andrea (my associate photographer) to book. After August when my doctor said “you’re good to go!”, I booked every single client who contacted me. Every single one.

    Ironically, this year, the year where I wanted to take things slowly so to allow myself time to heal, turned out to be my busiest year to date. We took on almost 50 wedding clients this summer between the 2 of us. Absurd. Unnecessary. Counterproductive. Fear-driven. I stopped trusting the Lord to provide for my business and keep things afloat. And instead I took things into my own hands at the expense of my health. And now I am paying for it.

    Thankfully, I have repented and realigned with what I feel God is telling me to do…”slow your roll, Beck” (and yes, I think God can speak to us in pop culture slang haha!). I have handed the reigns to this little business and my healing back over to the One who is really in charge of it all. I have committed to saying no more often, to declining invitations, to taking more walks and being more intentional with rest. I find it so interesting, that as someone who is a big advocate for living slower, simpler lives, obeying the Sabbath and creating margin in our lives…I happened to be doing the exact opposite, during a time when rest was of utmost importance. It’s humbling, embarrassing, sobering. But I’m thankful for God’s correction and grace as I get back on to a slower, more intentional path towards complete healing.

    {source}


    *Random side note that I don’t want to forget to mention, but also doesn’t really have a good place to fit into this post to I am just sticking it here….I have another broken bone in my head. I know. What the heck.

    When I went to see that local neurotologist in Denver, I said “ya know, I still can hear my heartbeat in my ear sometimes…why do you think that is?” He spent about 30 minutes looking through my CT imaging until he landed on a suspicious black area. “There should be a solid piece of bone here, but you don’t have it” he said. Basically, another area on my right side, called the Sigmoid Sinus plate has worn away. There is a vein that runs right next to the area, thus exposing my auditory canals to the sounds of blood flowing through the vein. Thankfully, the only symptom of this is pulsatile tinnitus (hearing your heartbeat). It will not impact anything else like balance, so I am free to just live with it and leave it alone if I want to. I can also choose to fix it, which would require a similar, but less invasive skull-based bone grafting surgery. But honestly, I don’t want to do anything that would potentially impact my SCDS repair, so I am choosing to leave it alone. Now, ask me in 10 years if I want to keep living with it and my answer may be different. But for now, we’ll let it be.

    I just think it’s really interesting that the very first symptom of SCDS I ever had was pulsatile tinnitus. Surgery did help with its intensity, but to know that it is due to an entirely different dehiscent bone is just really interesting to me. Frustrating. But interesting.

    Healing: 4 Months

    I’m officially 4 months post-op! Interestingly, it is also exactly 1 year since my SCDS symptoms started out of the blue one day while I was working in my office quietly answering emails. Oh how life can change in 365 days! A year ago, I never would have guessed I would be diagnosed with a rare syndrome and would need brain surgery to correct it! It still feels a little surreal to say “I’ve had brain surgery…”Crazy what life can throw your way!

    So I am now 3/4 of the way to my 6 month mark, which was when my doctors said that I would really start to feel well, and I’m 1/3 of the way to the 1 year mark, which is when they deem healing “complete.” They say time flies right? Well, recovering from a craniotomy slows time down a lot! And yet, I’m amazed at how much time has gone by. April 2nd feels like decades ago.

    I don’t measure my progress day by day or week by week anymore…rather month by month more-so now. I can say that August is much better than July was. And July was much better than June. Each week I think to myself “Now I’m finally feeling better! I just thought I felt good last week…but this is what healing really feels like!” I’ve probably played that phrase over in my head at least 12 times now as the weeks go by.

    I struggle with describing this recovery, it’s all very intangible. There are often no words to describe how I feel, which is frustrating. So I try to focus on the things that are measurable and tangible.

    I really turned a corner at the 3 month mark. My balance is amaaaaaazing, I can’t even remember the last time I had vertigo. Whooo! Praise God! The nagging pulsatile tinnitus which was still with me constantly just a few short weeks ago and since diminished greatly. Occasionally it will return for a minute or two, but it is quiet and doesn’t rattle my head like it did before. I will have consecutive days go by where it’s completely gone. That has been a HUGE blessing! I can officially say now that 90% of my pre-op symptoms are GONE. Gone gone gone gone, never to return again!

    The primary area where I am still struggling is over-stimulation. I already joke that the speed limit of my heart is pretty slow, but it’s much much slower you add brain surgery recovery into the mix! If I encounter stress, my brain turns to mush. It can be as simple as listening to complicated music while also writing an email or talking on the phone while sitting in rush hour traffic. If there’s too much going on (Whole Foods at 12pm, I’m looking at you!), I’m done. Unfortunately, it can also be completely self-induced…if I think too much about something stressful (running a business, anyone?) or my emotions are high, it’s like all cognitive operations come to a screeching halt.

    I still have quite a bit of pain and numbness at my incision site, but my jaw muscle is healing well…I can almost bite into a big cheeseburger 😉 I’m sleeping better, walking further and generally trying to get back to living life, just at a slower pace.

    On a slightly different note, I *think* I’m getting to the end of my medical turmoil with spinal taps (gah!!! h.a.t.e. them so much) and trying to figure out what’s going on with the inside of my skull (bone wearing away, cysts etc.). I went back in for another spinal tap 2 weeks ago. While it wasn’t as traumatic as my first one, it was still absolutely awful and an experience I never want to repeat again. We had the added help of radiology, 2 doctors, 3 nurses, Ativan, a triple dose of Lidocaine and it was still excruciating. But at least this time it was successful and we got results! My spinal fluid pressure levels were normal!

    This was such a huge relief, because if they were high it would have meant yet another surgery. That has been hanging over my head ever since my neurosurgeon at UCLA mentioned the “concerning imaging” he saw prior to my surgery. So YAY for not having to worry about that anymore! Since the spinal fluid results were normal, we can officially rule out intracranial pressure. While we’re not sure what exactly has caused the abnormalities, we know that it’s likely not the result of something “bad.” I think this means I can close this chapter on this. Now I can hopefully just focus on healing well without worrying about other medical stuff! Thanks for your prayers through the past few months!

    Suffering

    As I lay on the table, feeling every inch of the long needle go through my flesh and move closer to my spine, I quietly cried out to God, “where are you? why is this so painful? I prayed that things would go well…so why aren’t they? why have you left me here in pain? where are you? this is too much for me to bear.”

    To say my spinal tap went poorly yesterday would be a massive understatement. It’s a long story why I even had to do it in the first place…something about my neurologist being concerned about elevated spinal fluid pressure. That’s not important. What’s important is that I didn’t respond to anesthetic, leaving me wide open to feel the excruciating pain of not one, but two botched spinal tap attempts. Hands down, one of the worst and most traumatic events of my life. I have no words to describe the pain.

    After the surgical draping was removed, iodine washed off and medical staff had left the room, I laid there on that table utterly inconsolable. The tears simply refused to stop. David prayed over me, read verses with me, uttered soothing words to me…but my pain, sadness, anger, disappointment, despair and discouragement would not be assuaged. After all this time. After all I have been through….

    I was mad at God. Mad that He left me high and dry. I sought Him for help, comfort and peace. All I got was a hole in my back, horrible pain and the added anxiety of knowing I have to go through this all over again in the near future. I’ve never been so mad at God before. Not when I found out I had to have brain surgery. Not when we lost our only child. Not when David lost his job. Not when I was enduring endometrial biopsies, blood draws, hormone injections and surgeries. Words can’t begin to describe the waves of pain, doubt and anger that washed over me.

    This was the final straw. Rock bottom.

    Maybe it seems dramatic that a spinal tap could rattle me so much, but it did. I’m not a dramatic person. Truly. But I discovered a new low, a level of discouragement I have not known before. I can only liken it to Paul saying he “despaired even of life.” After all I’ve been through…was it too much to request that I make it through a simple spinal tap without complications or blinding pain? It went back to my constant struggle with Him…why is He able, but not willing? 

    God didn’t let me sit at rock bottom for very long. 5 hours, maybe before I read some powerful encouragement last lifted me off the ground last night. And this morning brought with it new perspective, fresh advice from a dear friend and healing through God’s holy Word.

    I’ve thought a lot about suffering over the past year. Why some people suffer tragedy after tragedy, while others seem to skate through life without a worry in the world. Why God answers some prayers but not others. Why He heals one person but not the next. What the purpose of hardship is. What God does with suffering and our character. Why my suffering is drastically different than a Christian living in Syria. It’s all been rolling around in my mind like a dryer on Wrinkle-Shield. Every week or so, I’ll have new thoughts, new questions, new ponderings that tumble around about the role of suffering in life.

    I think the first step to figure out the purpose of and response to suffering is asking myself, “what is the goal in life for a follower of Christ?” Is it to have a happy little life? Days full of blessings, joy, puppies and rainbows, avoidance of all affliction? The answer here in the West is probably very different from the rest of the world. In America, we view pain and suffering as a stink bug that just landed on our shoulder. Quick! Shake it off, squash it! Don’t let it touch you!  I’m convinced the rest of the world doesn’t think this way about hardships and pain. Surely Jesus didn’t think this way.

    Assuming the answer to that question has something to do with living for the glory of God, allowing Him to use us and accomplish things through us to promote the Kingdom of God here on earth, we have to accept suffering will be a part of it. If it was true for Jesus, it will be true for us. One of my favorite authors, John Eldredge said “If God doesn’t use suffering to accomplish maturity, what exactly is He going to use instead? A lack of suffering turns us into little narcissists. We have to loosen our grip on the demand that life work our for us and embrace the fact that suffering allows us to know God in ways that others don’t.

    In the last 24 hours, for the first time in my life, I have felt like I can relate to Jesus in a way I never have before. Through suffering. From Gethsemane to Calvary, he suffered. He suffered physically, emotionally. He despaired so deeply, it was as if the life was being crushed out of him in the garden of Gethsemane (Mk 14:34). He asked for the cup to pass him by, to be spared. Yet he, the Son of God, was not spared. “God sometimes says no. Sometimes He calls us to suffer and die, even if we want to claim the contrary. Never did a man pray more earnestly than Christ prayed in Gethsemane.” (Surprised by Suffering, R.C. Sproul).

    Jesus had his answer. He knew what fate lay ahead of him and he stayed the course. He didn’t flee Jerusalem or stomp his feet in a tantrum about things not working out. He pushed through to the bitter end. And His suffering was ultimately redeemed for His (and our) glory. We are called to participate in Christ’s sufferings. Some of us may participate more than others, but we all experience it. We can’t escape it. I can’t escape it. So I might as well try to take hold of it the way Jesus did.

    My beautiful friend Stacy called me this morning and spoke words that I know were inspired by the Holy Spirit. She said “If God were a helicopter-parent, He could have swooped in yesterday and spared you that pain. But instead He chose to allow it, intended for a larger lesson that will last a lifetime.” I don’t quite have the full picture of that larger lesson, but I know her words were true. There is purpose in pain.

    I certainly don’t have all the answers, maybe I never will this side of Heaven. I haven’t landed firmly in a place of peace over all this yet, God and I are still wrestling over a few things. But I do know that God is good. That He intends suffering as a way for us to share in His glory, to participate in Christ’s suffering is to participate in His exaltation (2Tim 2:11-12). His comfort flows into our lives just as His sufferings do (2Cor 1:5). I’m trying to rest in this truth, I guess it’s the best place to start.

    Healing: 8 weeks

    Now that I’ve hit the 8 week mark(Woooo! HUGE milestone!), I’ll probably only do one post per month about my recovery. I would love to start focusing on other things in life besides healing from brain surgery-it’s easy for this process to just take over completely. I’m glad I did these posts though, it’s been a great way to keep track of my progress!

    The Good
    So much good! Physically, I’m feeling amazing. I have tons of strength and tons of energy. The dizziness has really been minimal and the exhaustion is gone. I’ve been walking so much, which I know is helping! I made it up to 4 miles this week, which is amaaaazing! Praise God for the ability to walk with no dizziness or problems. It’s like a dream come true! Minimal pain and pressure. No more issues with talking too much. I have so many moments where everything is my body and brain is peaceful…it’s like this whole SCDS thing never even happened. I’m so thankful for all the healing that has taken place, especially over the last 2 weeks. I’m just blown away by the awesome progress!

    From one of my many walks this week

    Also, we met with the neurologist this week to discuss the brain cysts that were found the day before my surgery in April. I felt like it went pretty well. Essentially, I have yet another area of my skull just above my left eye where the bone has started to thin and wear away, creating an abnormal pocket. That pocket is being filled with fluid and brain matter (blech). If it grows or if the bone continues to wear away, it’s a problem. If it stays the same and does not change, I’m in the clear. It puts me at higher risk for seizures, double vision and migraines…so if those things ever present themselves, I’ll likely need another surgery to fix it. What is up with my skull bones wearing away?! It’s like I have arthritis in my head or something. :/

    Thankfully, the doctor was not concerned with the pituitary cyst at all, no issues there. He also felt like perhaps I’m just a slow healer and that I should wait a few more months before being worrying about the fact that I can still hear my heartbeat. I’ve resolved to just put it out of my mind until October. If it’s still there, I’ll continue my investigating. So, overall it was a good visit. There are a few concerning things, but so long as I remain symptom-free from the cyst behind my eye, I’m good to go! Yay!

    **Edited to add: Not sure what this is about, but the neurologist called again today to say they may need me to come in for a spinal tap. It will depend on what some of the imaging I’ve had done says. So, I guess maybe I’m not totally done yet?

    The Bad
    Probably anyone recovering from major surgery get easily frustrated, impatient and doubtful if they’ll ever get back to “normal” again. I think it’s maybe extra hard with something like brain surgery because so much of the recovery is intangible and incredibly difficult to track or quantify. The swelling is gone, all of my shaved hair sits hidden underneath my normal long hair, there is no more physical evidence of brain surgery, aside from a scar on the side of my face and even that is well hidden! And as I stated above, physically I’m feeling great.

    But the way I look and feel physically doesn’t always match how I feel cognitively. And that is highly frustrating.

    Prime example: the other day I was making guacamole while listening to music and then David asked me a question. Game over. I couldn’t think clearly, I struggled to find words and started to feel panicky. The only thing that helped was sitting down and staring out the window. It took a solid 5 minutes for me to come back to reality. Gah! It’s just guacamole Becky!!! How hard is it to make guacamole while talking to your husband with music playing in the background?! Apparently, too hard. I know, I know. I need to give myself grace. I had brain surgery 2 months ago. It’s a minimum 6 month recovery. Grace. Grace. Grace.

    I just feel caught in that tension between feeling healed, but not completely healed. Like, I have the energy to go climb a mountain. And I think I could climb a mountain if I wanted to. But I know that I would pay dearly for it…I’d probably get confused and lost on that mountain. Exhaustion would probably hit me on my way down and I’d have to take a nap on the trail. Then I’d probably have to enlist someone hold my hand and lead me down the rest of the way.

    I remember before surgery, people in my support group always warned about not overdoing it during recovery. “If you do too much, you’ll pay for it”. I never understood that, I always though “you’re recovering from brain surgery, how on earth could you overdo it?!” But I get it now. Your body tricks you into thinking you’re totally fine and it’s ok to start doing things normally again. But your brain can’t keep up with your body. And this is where patience continues to play a part in the healing process. Only time and God’s healing will help with this area of recovery.

    Healing: Week 6 & 7

    I had a feeling that I might not be able to get a post done last week for my 6 week mark since Caitlin was in town. I was right. 🙂 That’s ok, we’ll just combine weeks 6 and 7 into one post today. My surgeons said that the 6-8 week post-op point was when I would really turn a corner and I believe they were right!

    The Good

    This week I had so much energy, I had to restrain myself from flying out of the front door and breaking into a full sprint. All I want to do is go for a nice 15 mile hike 😉 It’s a mixed blessing, because although I am feeling good and have lots of energy, I can’t act upon that energy in the way I want. It’s going to be a looong time before a 15 mile hike is a reality! But that’s ok, I’m able to do other things with my energy that still honor the healing that is taking place.

    Since Caitlin was in town and I had a full-time chauffeur at my disposal who willing to drive me wherever I wanted, I decided it was time to slowly ease back into society. What better place to start than Target?! We also went to Whole Foods, had a picnic, went to David’s office and my in-law’s. I’m happy to report all my outings went very well with minimal crying, confusion and mental breakdowns haha! I could tell God’s hand was with us everywhere we went, protecting me from rogue shopping carts, crowded aisles and overwhelming produce sections. It felt really really good to be out and about!

    Our pre-Target selfie

    Whenever Caitlin and I get together, we talk talk talk talk. We can’t help ourselves, it’s just too much fun. Since she lives in Mexico, we don’t get the chance to be in each other’s physical presence very often and we had soooo much to catch up on. Typically, too much talking causes pain in my ear and jaw that will stick around for 24-48 hours, so I’ve had to really monitor how much I talk.  But last week I learned quickly that this is getting better. I definitely talked too much each day with her around, but the pain would typically only last 3-10 hours and rarely over night, so that is major progress!

    I’m also happy to report that the lingering exhaustion has vanished (knock on wood)! It’s like the day I hit the 6 week mark, the exhaustion went away. I can now easily chop an apple without needing to rest afterwards haha! I wonder if it’s tied to how much I’m walking now…I’m up to almost 2 miles per day and I can’t help but wonder if the increased activity is also increasing my energy and helping ease the excessive tiredness. I also think that all my walking is really impacting my balance for the better as well. This week I had 3 straight days go by without a single moment of unsteadiness or feeling unbalanced. It’s really tempting to push things even further and think “well, what if I walked 5 miles? Wouldn’t I feel even better?” No. There is definitely a limit of “too much” that causes me to feel worse, so it’s been a tedious process learning to do enough that I’m promoting healing, but not so much that I’m causing setbacks.

     

    I also officially decided to outsource half of my editing jobs so that I could take more time to focus on healing and on getting better. I still have plenty to keep me busy, but keeping up with all my editing was stressful and unnecessary. So I hired a freelance editor and she’s doing a great job and helping me out. Having that stress lessened is pretty great!
    The Bad
    I finally heard back from my UCLA neurosurgeons on the lingering heartbeat that I still hear in my right ear. They officially said it is “not normal to continue hearing it at this stage in my recovery”. They suggested that there is probably another issue going on and that I should continue the investigation with the neurologist in CO.  Most likely, it is the brain cysts that are putting pressure on my brain, causing elevated intracranial pressure. One of the most common symptoms of elevated intracranial pressure is pulsatile tinnitus (hearing your heartbeat). So that is really hard. I was and still am very discouraged. I will be seeing a neurologist in CO next week, so maybe we’ll get started down a road that leads to some answers.

    Don’t get me wrong, the surgery was still successful. It fixed my worst symptoms (vertigo & constant feeling of an ear infection) and if I had to do it all over again, I wouldn’t hesitate. I’m so so so thankful I had the surgery, I really am. This is just an odd twist, because the pulsitile tinnitus was the very first symptom I ever had and we always attributed it to SCDS. But it looks as if it was actually evidence of something else going on that we just never knew about. It feels a little bit like we’re back at the drawing board when it comes to that.

    There are other small and rather insignificant setbacks I’ve had in the last 2 weeks like the continued confusion when there is too much auditory and visual stimulation, or pain/pressure in my ear and jaw if I talk too much. I still get off balance at times as well. But that is all still normal. This is a long recovery, so I’m learning that patience is part of the healing process.