Today is the day after my first round of scans. One MRI scan that took more than an hour because I couldn’t breathe, and a bunch of X-rays of my head, neck, chest, back, and shoulders.
My day actually started the day before, due to stress and anxiety. I am not claustrophobic, so being inside of the MRI machine isn’t my actual problem. My problem stems from the reason I have to be in one at all, my lovely brain condition. Knowing that there’s something wrong housed within your person, that you cant fix, even with modern medicine, it’s a jarring and altering experience. You feel like you aren’t yourself anymore.
I have only had a couple of weeks to accustom myself to my new reality. I haven’t finished the rounds of tests I need yet, and I haven’t spoken to my neurologist or the neurosurgeon yet. I don’t know if this experience is going to end with me in surgery. But a 16mm herniation of the brain is an almost guarantee of surgery, always. It might just not mean surgery right now. But if I don’t need surgery this year, what happens in the future?
I have insurance, good, expensive insurance we get through my husband’s work, but the way that things are looking, that’s not going to last forever. This Trumpcare bill is terrifying. We would never be able to afford it, we would never be able to afford the costs, the premiums, the copays. We are BOTH of us patients with pre-existing conditions. I would never be able to have access to all the scans and MRIs and medications and possible brain surgery I would need under this proposed bill. And my husband wouldn’t have access to his doctors or his medications either.
So I’m stuck in this endless cycle of thought. If the doctor says I don’t need the surgery now, do I ask him to do it anyway, out of my fear of not being able to get it later? Let’s just be irrational and ignore that the doctor will probably think I’m crazy for wanting it in the first place. Or if he says I need to get it now, how do I even react to the idea of needing immediate brain surgery? Because very honestly, I DON’T WANT TO WANT BRAIN SURGERY.
No sane person wants to have surgery. I mean other than cosmetic surgery, which this most certainly ISN’T. The idea that someone is going to crack my head open like an egg keeps playing over and over again and makes me extremely nauseous. I mean, I know that’s not how they do it, but God help me that’s all I can picture. As a gamer, I guess I could make an egghead Bioware joke somewhere in there, but I’m more of a Cullen fan girl. Solavellan hell is too much angst for me.
And while I worry about future surgeries, I also feel immense guilt and shame for being unable to bring in any kind of reliable income to help my husband with our bills and debt. I haven’t been able to work since I was diagnosed after an auto accident three years ago. My small skincare business was doing well until about a month ago, but not so well that I was actually making any headway in our debt. This past month I had had to give up my work space for my husband’s family to use while they stayed with us, shutting my little online shop down. My phone getting stolen just resulted in me having to shut it down permanently until I could get it replaced.
So with this loop of nope running around in my head, I had to find something to distract myself with. So I turned to my mother in law’s ancient sewing machine and DIY videos on YouTube. Thus I spent my time, making pants I will probably never wear in public, having my husband force water and sustenance at me, and fighting my cat for table space.
I don’t sleep well normally, but that night was pretty bad. I tried to sleep, but part of my mind stayed awake, listening for that five am wake up call. We were out of the house pretty quickly, and barring a run in with a chicken crossing the street to get into a fight with another chicken (it’s downtown Miami, these things are commonplace) we found the MRI center pretty easily.
Early morning downtown Miami
The staff at UMBH is pretty great, and even though getting my tests done at the hospital proper is slightly more expensive (it was going to be expensive anyway, so the extra charge was negligible), the great care I immediately experienced upon walking through the door of the MRI center made me feel comfortable and valued. Asking for a photo with the MRI sign for my blog was met with confused smiles, but allowed as long as I stayed away from the machine.
I had a slight panic attack in the machine and couldn’t breathe properly for ten minutes, and the tech talked me down and redid the scans when I felt better. I had X-Rays in another building, and one of the staff walked us to the building and explained to us where to go. By the time I was done with all my scans I was exhausted, sweaty, shaky, but in no way did I feel like I was being treated badly. And I can’t tall you what a gift that is.
I’m still exhausted and worried, but at least the first part of the tests are over. Now I have to wait a week for the second part. I’m probably going to be fighting the cat for crafting space again soon enough, but for now I think some rest is in order.
Here’s the DIY video for the pants I made. It’s a great channel! Check out her videos. Making stuff helps me feel better about my depression. I recommend it.