I was thinking of posting this photo online but I couldn’t decide on a name:
Its all fun and games until…
Beat all to H-E-Double Hockey Sticks
Hashtag: What I Wore
My follow up appointment schedule began with two of three MRI’s and that super attractive outfit change into skivvies and a hospital gown. I’ve had a total of 8 MRI’s done in two years and it makes me wonder if that’s at all healthy. And I’m scheduling my 9th time in the cage for later this month.
Let me explain why I call it “the cage”. When its time for your brain and spine MRI, you’ve usually gone down into the basement levels of the hospital or imaging center. You will have been walked through a series of very heavy doors closing off the one-foot-thick walls and into a room with a large, white Stargate Circle creating a constant very loud hum and you are to lay on the sacrificial table attached. Your head is cradled between foam so you aren’t tempted to move it. Ear plugs then headphones are put in and on for you - this is weird. Then the technician begins to attach things around your upper body, neck and face to the point that you begin to feel like Hannibal. You are now in the cage and you cannot move. While laying there, you think about all of those protective walls and doors to keep people safe from the object you are now being electronically pulled into while you’re wearing not much more than a sheet. I usually ask for a blanket. Its comforting, even though I’m not cuddling with it, I like to know that its there. You may call me Linus if you want.
Its at this point, after you been sucked into the orb, that a voice comes to you from your headphones to let you know that its time to swallow, cough or take a big breath because we’re doing the cervical spine and its a very sensitive image. You cannot swallow, cough or breathe heavily because you will have to redo that image and extend your time with this loud, uncomfortable beast.
The sounds of an MRI can only be described as temporarily living inside of a printer from the 80’s. My grandfather, who was attempting to assure me before my first time in, said it was calming and that he fell asleep. After logging almost 10 hours inside several of these machines I cannot yet say the same. I am comforted by my blanket, but the sounds are really loud and sometimes remind me of EDM and sometimes remind me of a leaf blower and sometimes remind me of getting your tires rotated or an old car that won’t start. Plus, my mind does not ever shut off and I keep thinking about how they don’t allow much padding for your butt because your spine has to be flat and oh my gosh my throat tickles…
The fun part about not falling asleep is the mirror on your face-cage is pointed in a way that shows the technicians and the Radiologist looking at the computer. Its a reminder that the giant magnet you’re laying in and the loud noises of differing radio frequencies are making a 2D image of your brain and body appear over there. Its science and its cool.
Up until Sunday night, I was pretty calm when thinking about my upcoming appointment with my awesome Neurologist. Nick and I both just wanted to know if the MS is getting worse, if its getting better, if it looks the same - Is the medication working? But then Sunday night rolled around and my brain kept going and going and the nervousness set in. As much as I wanted to know if things were progressing, one way or another, I also didn’t. My arm has been bugging me since we got back to LA. My particular brand of MS symptoms have been annoying but I have been so lucky that its just that and nothing more. I’ll write another day about my symptoms and try to shed some light for those new to Multiple Sclerosis. There is a funny story involving pizza, but I’ll save it.
Monday we met with my Neurologist and we looked at my scans together. As she scrolled through my brains and my spine, she complimented my lack of brain shrinkage (woohoo!) and showed us where the MS lesions were obvious. On my spine, there are so many that you can’t really tell them apart but on my brain the little whitish fuzzy spots were easy to see. And even better, the whitish fuzzy spots are more grey than white, which means that they aren’t active. Which means that my MS isn’t progressing and that my symptoms aren’t relapses but are just the same old ones that flare up from lack of sleep and stress.
Next up: MRI of the thoracic spine and hopefully going back on the full dose of medication. And, very important, I’m making time for more sleep and taking care of myself to reduce stress, i.e. more yoga, exercise, reading and quality time with my people. Hold me to it.