My 2022 started off with such high hopes, and soooooo many wishes for an incredible year. And it started off much better than I could anticipate. Being chronically Ill, you never know what to expect, but the unexpected is always just lurking right around the corner. And that is what happened to me.
I started off the year with severe chronic fatigue that could not really be explained. I had to take 2 weeks off from my day job because I could not stay awake during the day. It was horrendous, even with the stimulants that I was taking. I was able to finally get a little bit more of an answer when I was diagnosed with hyperthyroidism. And around the same time my life changed in a way that I never could have anticipated. My incredible man asked me to be his wife on March 19th!!! He asked me to marry him, y’all!!! It was the best time of my life.
Shortly after that I began to feel very off. I am not sure how to explain it, but I began to feel as off as I ever had. I was seeing visual disturbances and I started to feel like I was drunk. A few weeks prior to my 29th birthday I had gotten an MRI and an MRA (MRI of the arteries in the brain) done due to the visual disturbances I was having. As a prior surgery survivor (Chiari Malformation), I knew that something just felt completely off about me. I received the results the weekend of my 29th birthday (DOB April 25) and it said that there was cerebral spinal fluid on my optic nerves. And I immediately knew that that was not a good thing.
Sure enough, May 9th is when all hell broke loose. Just two days before my followup with my neurologist who ordered the MRI’s. I went to the ER because I was so dizzy and my vision was so blurry. I didn’t know what was going on. I went home early from my day job and I projectile vomited. It was very off-putting. I asked my then fiance’ to take me to the hospital once he got home. They gave me meds and sent me home. I saw my neuro on that Wednesday and he told me that I needed to go back to the ER to have an emergency spinal tap to see where my pressures were. I was terrified because I was about to have a 5 inch plus needle pressed in between my vertebrae in spine. Not a good time. My best friend and my fiance’ met me at the ER and I was heavily medicated I barely remember it. My opening pressure was 25 and anything above 20 is not good.
I spent the next few weeks in and out of the ER. From passing out in my primary cares office (which led me to a 3rd ER visit in one week), to pressure building in my head so bad I couldn’t do anything but lay on my back for 72 hours straight. It was without a doubt the most terrifying unknown thing, like what the hell is actually happening to me? I went from ER to ER until I ended up at Baylor Scott & White University Hospital in Dallas after a 1 hour transport from Fort Worth. I was admitted and in the hospital for 9 days. I spent most of my days heavily medicated and terrified out of my mind. I blew several veins before they decided to put a central line in (a deeper IV in my upper arm so they can get me my meds). I was seen by so many doctors with little answers. It was then I felt as if I wasn’t going to make it out of this alive.
I knew that my life was dwindling before my eyes and I was terrified. There was one night in the hospital that I had a pounding headache and with 3 rounds of pain meds and 1 round of morphine later, 16 hours had passed and my head would not stop pounding. My fiance’ and I had previously had a conversation about getting married. If we wanted to get married on our anniversary. I asked him if he would be okay with us getting married before we had a wedding with all of our friends. He said yes. I wanted to be married to my best friend if it were my time to go. I held on to that I was clenching to my bed in so much pain. I held onto the idea of being able to marry my best friend. That’s what got me through those very long 9 days.
Somehow, just days after my first and second brain surgery of the summer we did our engagement photos. I had rescheduled them so many times, we didn’t have a choice to get them done then. As we were getting married 1 week later.
I barely remember these. I had a pressure headache shortly before these photos and my fiance’ had to practically carry me to the location. I was walking with my eyes closed. I “turned it on” for the camera. But, I barely remember this. They came out amazing. I was very sad I couldn’t enjoy them.
August 1, 2022. I became a married woman. A wife. His wife. 😍
Just as the engagement photos, I barely remember this day. Which makes my heart very sad. It is a day that I want to remember. But both of these days, little did we know that the hard part of our journey with my medical situation wasn’t over yet.
Just 16 short days into our marriage I ended back in the hospital (after two previous ER visits) with stroke like symptoms. I was having partial facial paralysis and half my body was going limp as well. The pressure in my head was so severe that it was causing my body to have a mock stroke. As I previously mentioned, your opening pressure is never supposed to be above 20. And my opening pressure reached 48. They told me that they only see patients with this severe of pressure in their brains when they have a brain infection. Which I did not have. So I had to have another emergency brain surgery. Which was cancelled by a week because my surgeon ended up getting COVID and he was the only doctor that could perform the procedure.
After this surgery, everything slowly went back to normal. I have a condition called Idiopathic Intracranial Hypertension (IIH), which was subsequently caused by my Chiari Malformation surgery. I had two major veins in the right side of my brain collapse. The first one due to the craniotomy (portion of skull removed) I had in 2019. And once the stent was placed in the vein, the vein adjacent to that vein immediately collapsed. I never felt relief from the first surgery and I thought it was healing pains. And it was not.
I ended the year on what was a bit of a higher note (aside from getting COVID myself) in Mexico celebrating our friends marriage, but also, my husband and I’s mini honeymoon. I had the absolute best time of my life. And it was incredibly the most difficult year I have ever experienced.
I got a new diagnosis. Engaged. Several ER visits, 2 hospital stays, several spinal taps, tons of pain meds, 3 brain surgeries, another diagnosis. Married. Another diagnosis. Had a total of 6 surgeries. Survived. Celebrated love in so many ways.
So I pose the question again. 2022, WHAT THE HELL WAS THAT?!?!?
You brought me the HIGHEST OF HIGHS. You brought me the LOWEST OF LOWS. THE LOWEST OF LOWWWSSSS.
In so many ways I am still very sad and angered by the events of this year. Because it follows a very similar theme of my life in the sense that nothing is ever about me. I got engaged, and instead of being able to celebrate the happiest time of my life, I almost die… more than once. I then get married. And almost die again. I was writhing in pain through the highest and happiest moments of my life. Why? I know that I will never get an answer. And I honestly do not think that I want an answer. I think it is going to only piss me off even more.
But. I did gain a lot. I gained a beautiful and incredibly amazing husband. I gained a level of advocacy I never knew I could reach. I gained a sister. I gained new friends. I gained new support. I was challenged and overcame.
I was not ready for whatever the hell that was.
BUT I AM A WHOLE ASS WIFE BIIIIIIITTTCCCCHHHHH!!!!
And we officially planning our wedding!! See you again soon, Mexico! August 1, 2024!!!!!
2022… please don’t ever do this bull shit again in any of the other years to come. I deserve a break. We deserve a break. Please. Please. Please.
The Battered Woman 💜🙏🏽✨