Brain’s Rage

I’ve been incapacitated for over a week. I mean, not even able to contribute to a normal conversation, stuck flat on my back in bed. For a week.

BUT I’VE HAD THINGS TO DO.

And Jesus was like, “Hey girl. Imma force you to sit with me since you’re so ‘busy.”

Sidenote: I’ve been reading Matthew and Jesus has some holy ‘tude that I’m totally digging and now that’s how Jesus talks in my head.

lumbar puncture rest

I had a lumbar puncture to find some answers to medical issues I’ve been having for over a year. I took the above photo during a very stubborn moment a few hours after when I should have been laying down. Instead I was like, “I feel fine enough to walk upstairs to get my camera and remote to take a little selfie for a blog post. I have no idea why they told me to rest today. I feel fine. I am strong.” It was all adrenaline.

Less than 24 hours later my body was in mutiny, taking sweet revenge for not following orders and staying on my back for 48 hours. My body was like the ship from Captain Phillips being invaded by pirates.

Friends, if you ever get a lumbar puncture, that stuff is no joke. Did you know you have an entire pressurized system in your body that will go completely defunct by a hole the size of a needle’s tip? Why yes, you do! And it will! Science, yay! Your entire equilibrium will turn against you should it become invaded by what can misleadingly be called a “simple procedure” where you should “feel fine” after “24-48 hours.” Liars.

I alluded to a chronic health issue with my ear in this post but didn’t go into much detail. Last May, I began having chronic, constant whooshing in my right ear. I get a lot of head tilts when I tell people about this because I realize it’s an abnormality. Folks usually ask follow up questions like, “What’s it sound like? You hear it ALL the time? Does it hurt? Is it annoying?”

First of all. YES. ALL the yeses. It is annoying. Because what does it sound like? Imagine being in a wind tunnel TWENTY-FOUR/SEVEN. All day. All night. No break. And it sounds like wind but it is to the rhythm of my heartbeat. This has been happening since May 2015. I have heard constant whooshing in my ear for over 400 days. For this introvert that treasures silence, it has been torturous.

It doesn’t physically hurt my ear. As a matter of fact, I’ve been looked at by several doctors and have been told that my ears look physically perfect. I get the gold medal in perfect ears. (I’m living in Olympic world as of August 2016, thanks to Rio) The physical hurt that I feel from it is that the whooshing constantly fluctuates the pressure in my head and a lot of times I spend my days with a blood-rush to my head, feeling like I’m constantly upside down. That in turn, throws off my balance and sometimes I’m exhausted just from feeling like I’ve had a head rush all day.

I’ve also experienced hearing loss. A hearing test showed I have low-frequency hearing loss. I’m 29 going on 80. I can hear that someone is talking to me, but I can’t always make out what they’re saying. It’s comparable to your ears being under water while someone is talking to you. You hear them, but it sounds muffled.

Last year when I vlogged every day for six months (you can watch those videos here), was when I just started looking for answers. Over the last year I’ve been to seven doctors, spent days reading online forums and support groups, and have tried dozens of home remedies searching for a solution to my problem. I’ve had all the bloodwork done, I’ve had hearing tests, I’ve had an EKG, an EEG, CAT scans, MRIs, MRVs, and now a *shivers* lumbar puncture. I’ve seen ENTs, vascular surgeons, radiologists, cardiologists, general surgeons, chiropractors, interventionists, neurologists…

And with every one of these doctors, no one knew what could be wrong with me and sent me along to the next doctor to try and figure me out. It’s felt hopeless, thinking I’m going to have to live with this loud noise, unpredictable pressure in my head, and hearing loss the for the rest of my life. It has been a very defeating journey.

I ended up in a neurotologist’s office. The first time in over a year that I have felt validated, heard, and advocated for by a healthcare provider, which has been one of the biggest things I’ve longed for in a relationship with each doctor I’ve seen.

He recommended a lumbar puncture because my MRI showed I have a lot of cerebral spinal fluid in my brain, to which I made jokes about how big of a brain I have that it needs extra cushion. I’ve always got the jokes. I’m here every day.

I was feeling pumped. We’re getting answers. We have a track. There has never been a track. In over a year of this mess, we have had NO track and it’s stressed me the frick out.

And then I was incapacitated for a week with mind-numbing headaches and I thought I was going to die and wanted off the track. Every time I thought I was feeling better, I’d get up and minutes later I was on the floor again.

I shared this miserable experience on social media. And I got messages recommending a blood patch to help the hole in my spinal sac clot. Everybody raved about this blood patch. “Give me this blood patch with a garnish of pain meds STAT” was all I could say. So I went back and had a blood patch done, which was even more excruciating than the lumbar puncture. I mean, needles through my vertebrae for the LP? No thanks. THREE needles through my vertebrae AND one in my arm for the BP? Extra no thanks. I think I even said out loud, “If I ever have bio babies, I’d rather feel myself rip in half than to have an epidural and feel these things again.” And I know all of you mothers that have birthed babies are laughing in my face right now. I get it. No hard feelings. I’ve been known to eat my words, so don’t hold me to that. I also said I’d never let me kids eat processed meat but they just had corn dogs for lunch because mama just can’t with the tantrum today. I’m willing to be humbled.

So I got that miracle blood patch. And you want to know what my night looked after that was done? All the nerves in my back were alive – like when you say “IT’S ALIVE” in a creepy, mad scientist Frankensteinian way after he created his monster. I had flaming nerves where I didn’t know nerves existed. If I moved, I cried. If I turned my head, I cried. If I sneezed, I cried. If I breathed, I cried. Basically, I cried.

Then, the pressure I had always felt in my head with my regular whooshing came back but it came like a flood and I felt like my head was literally going to explode (and I DON’T use the word ‘literally’ ever because, just no, you did not ‘literally’ die and ‘literally’ cannot makes NO sense *eyeroll*). I thought that with one wrong move my head would pop open and my brain would fly to the ceiling. I imagined my head literally exploding like a watermelon with one rubber band too many wrapped around it’s body. It made my ears and my eyes closed for business. My mother was sitting three feet from me talking and I could not understand what she was saying, the pressure muffled her voice. My eyes could only prop open halfway because too much pressure was sitting on them. Or my brain is just too big. *All the jokes*

I took Aleve and prayed to my Good Good Father that I would be miraculously healed by morning, and cried myself to sleep.

And I woke up feeling 90% better. Headaches gone, still sore – but back much better, pressure down, ready to conquer the world.

I moved daintily Friday and Saturday, trying to keep all the parts in place. I was in the clear.

Then I woke up Sunday with a headache. Nursed it by laying down and drinking water. Felt better. Went to bed. Woke up today with no headache. Dropped the kiddos off at school. Headache’s back.

And the only conclusion I have is that there is no answer or guarantee from our bodies. It’s going to do whatever the heck it wants to and we just have to let go and let God teach us whatever we need to learn in our pain.

So far, I’m learning that I’m actually pretty fortunate, that there are a lot of people dealing with junk in this world, and that I’m pretty blessed. Even with a headache.

But if you need me, I’ll be laying down nursing my brain’s rage while my kids watch endless Peppa pig and hide cheerios under the couch cushions. It’ll be fine.

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