I have been engaged for 2 months and 6 days. And out of those two months and 6 days I have been writhing in some sort of pain. Whether the agony was from the constant inability to stay awake because of the nagging fatigue that I have been facing. Or if it was simply because I was in pain as a whole.
I never in a million years could have imagined what is supposed to be the happiest time of my life is now also the scariest and most life threatening time in my life.
I have been battling on how, when, and where to even begin to try to process what has transpired over the last few weeks and one of the only words that comes to mind is. Anger.
For those of you who are new here (happy to have you), I was diagnosed with Chiari I Malformation on June 12, 2019. Chiari malformation is basically where your brain is too big for your skull and it causes your brain to herniate into your spinal canal. There were many signs and symptoms prior to this date as Chiari is congenital. I had suffered and endured over 85 symptoms for a better part of my life and was always made fun of for it. Flash forward, I had the Chiari decompression surgery on October 2, 2019 (what I like to refer to as my reborn day). I was given a second chance at life. I was so close to the end of the line in life and I was given a second chance.
And now here I sit writing this blog post tearfully expressing the trauma that I have endured due to this dreadful medical condition that does not have a cure. Aside from not having a cure, most neurosurgeons and neurologists are taught to believe that Chiari Malformation is not real. They are taught to believe that Chairi doesn’t cause symptoms and that it is only found incidentally. Most medical professionals shrug this condition off and that is what makes it that much worse. I recently had a neurosurgeon that doesn’t specialize in Chiari Malformation tell me that I HAD Chiari…. not that I have it… that I HAD it… as if the surgery just magically cured me.
I began to feel sick at the beginning of May 2022. I was feeling rather nauseous and dizzy. I am brand new to Fort Worth, Texas and I just assumed that it was due to the fact that it is allergy season and my allergies have always been a bitch (LOL). But deep down inside I always knew there was something deeper going on. I always knew there was something going on that was much much worse than allergies. But there is this thing that I tend to do when it comes to my medical conditions or even my mental health; I gaslight myself. Growing up I was always called a hypochondriac and I was always told that I was fine, there’s nothing wrong with me, I am just being too dramatic as always. So when something is happening with my body I always gaslight myself and hear that tiny little voice in the back of my head of my parents or an ex telling me that I am being too dramatic.
May 9, 2022 I woke up feeling violently ill. Extremely nauseous and was very concerned at this point, but I went to work instead, because you know…. capitalism and corporate america… and allladat… feeling the pressures of not wanting to miss work again… for being sick… again… but we can discuss that as a separate issue at a later date… you feel me? Anyway, I went to work for about 5 hours and decided I should probably go home and likely go to an urgent care or the ER. I had barely made it into the house before I threw up. I texted my fiance’ and told him that once he was home I needed his help showering (I was too dizzy to stand on my own) and then to take me to the ER. We went to the ER and they put me on fluids and some meds to stop the nausea and all I needed to try and do was make it to my neurology appointment on the upcoming Thursday.
A few weeks prior I had a brain MRI completed that indicated that there was a Cerebral Spinal Fluid (CSF) buildup in my head that was pressing on my optic nerve. I just needed to get to the neurology appointment to address the severity and the next steps. Wednesday came around and I returned to work again and was only able to stay 5 hours due to my symptoms (and the alarming fact that I was urinating blood… again… different post… I promise). I saw my neurologist at the scheduled appointment whom then stated that due to my symptoms and my recent ER visit I was going to need to have an emergency spinal tap done back in the ER. And this is where things get a bit blurry and a whole lot of scary.
I had to change into a hospital gown, which at this point in time I am incredibly used to doing so since I have had 17 surgeries already. Modeling my new brown/beige hospital socks which are a color that I have not seen yet. I was given IV fluids and IV medication to help with the fact that my head felt like a bowling ball, the searing headache behind my eyes that was accompanied with pressure, and nausea/dizziness. I felt like I had been on a spring break binder for about 5 days and it wasn’t getting any better. I was terrified laying in the hospital bed with my fiance’ and my best friend by my side. I have PTSD when it comes to procedures and surgeries so I had to ensure they sedated me enough to where I would not freak out. I had a 7 inch needle inserted into my spine and was told that my starting pressure was 27. Which is very high and they needed me to get back down to 15. It was so scary but it was also the clearest my head had felt in a very ling time.
Until the next day when the pressure returned within less than 9 hours and I threw up and passed out and was back in yet another hospital room.
This medical condition has taken so much away from me. I was on such heavy drugs and incapacitated for the better of a week and a half before I truly started to feel like myself again. Going from one ER room to the next. My veins looking like an addict trying to get a fix because of the amount of IV’s and blood drawing. I felt like I was drunk and I couldn’t get sober. I felt like I was hungover and just kept drinking and was unable to give my body the chance to recover.
What that is called is a Pseudo-Tumor Cerebri (Idiopathic Interctranial Hypertension). It is when the CSF in the head causes a pressure build up that mocks a brain tumor. I have symptoms of someone who is living with a brain tumor. I have mini pockets of fluid all over my brain. There is nothing more terrifying than that to me. Not in this junction at-least.
Circling back to the anger portion of this monologue I am on. Anger is the only thing that I am experiencing because I simply don’t understand what I ever did so bad in life to deserve to have to endure all of this. Of all of the things I have had to survive, why do I need to survive this to? I am angry because my fiance’ has to help me bathe, eat, change clothes, walk instead of us relishing in the fact that we are engaged and cannot wait to get married. He hasn’t seen many sexy, flirty, or fun sides of me. He’s seen shower chairs, crying, pain meds, IV’s, ice packs, canes, crutches, walking shoes and boots. It saddens me. He’s seen me more in hospital gowns than he has in actual dresses.
I should be celebrating and riding the thrill and the high of the engaged bubble (which I am but not very high energy). I was in the bubble for about 3 weeks before I began to feel sick and unwell. I am angry. I am scared. I am sad. I am traumatized. And I am not even out of the woods yet. I have to ensure the medication is working and if it is not working I will have to have another brain surgery. So what am I supposed to do now? How am I supposed to cope? How do I find ways to see the light at the end of this very dark tunnel? How?
Right now this is about as vulnerable as I can get and I can be. This is as transparent as I can get. I am okay with knowing that I am allowed to feel the emotions that I have surrounding my medical condition and the life i am currently not getting to live to the fullest.
I am just hoping that this is all resolved in time for when wedding planning is truly supposed to begin. I just truly hope so. I have been robbed of so much, I don’t want to be robbed of that too.