Backtracking a little, I'll start at the morning of the diagnosis, or my first full day in the hospital. I'd slept well, even after starting my IV drip of prednisone (the steroid to clear my eye), and woke up optimistic for the tests we were going to run. Blood was drawn and I was told I was waiting for MRI space to open up so we could run the scans. I was warned that my doctor had ordered a full battery of brain, orbital, cervical and thoracic spine scans, and that it was probably going to be an hour and a half of testing. Nervous as I'd never had an MRI before and it was a new experience, I was finally taken down to imaging in the early afternoon.
Now I know MRI and I don't get along well. I was in the machine for less than a minute before it brought on a full on panic attack and they had to pull me out and talk me down. The worst part was because the scans were of my brain, they wouldn't give me anything for the anxiety, and I had to work through it myself. Once I was calmed down and reassured by the MRI tech, she started playing my music again (in case anyone was wondering, the soundtrack to my hour and a half of scans was the Guardians of the Galaxy soundtrack and Gaga's Born This Way, mostly because it was the only thing I had downloaded on my phone and couldn't stream radio) and we began the process. She kept me updated on how long each scan would take and what it was doing, and I closed my eyes and tried to focus on the music the best I could. For me, it wasn't the noise of the MRI, but the space and the need to keep completely still. I practically tore myself off of the table when it was all done.
The rest of that night happened as I've already said, except I left out that the horribly uncomfortable positioning of the MRI had left me with a bad headache, which was being managed by pain meds but never went away.
Wednesday was a bad day, and one I don't remember well. Sometime over the course of the day the headache that refused to leave blossomed into a full migraine, and I was given IV magnesium sulfate, which finally cleared the headache up, but they neglect to tell you that mag sulfate hurts like hell when it's being administered. Like fire being pushed into my veins.
I also really don't remember Thursday and Friday. I know that I Skyped with and talked to my family, I know Jon was there, I remember all of the amazing things the nurses did for me and how kind they were, I remember talking to the doctor who told me at one point he was handing my case off to another neurologist I had asked about (I found her looking at the Cleveland Clinic page, and her profile specifically listed MS as one of those "things I can help with" blurbs). I also remember the visits from my friends Lise and Michelle, which meant so very much to me because it was wonderful to see friendly faces I knew and to have time to talk to people who weren't nurses, doctors, or staff. I probably spent a lot of that downtime I don't remember looking forward to those visits, since watching TV or reading was something I couldn't tolerate long with my eye. Lise brought me a beautiful coloring book and mechanical colored pencils which I worked on a bit, and Michelle brought me some lovely Christmas themed fuzzy socks which have been my constant companions since I've come home. There was lots of joking about the fact that the hospital garb had been done by a famous designer I actually knew (Diana von Furstenburg) and how it looked a lot like the Romulan uniforms circa TNG. I may not remember the clear passage of time and the order in which it happened, but I remember bits and pieces, and know that it wasn't all bad.
I also realize now, in retrospect, that I was beginning to see the side effects of the prednisone and the toll it was taking on my body. Those came into even more sharp relief after I was discharged and I was finally able to identify them, but at the time I thought I was fine, and was relieved that my vision seemed to be improving slightly from near total blindness. Hot flashes, increased anxiety, blood pressure, heart rate, etc. More on that later.
On Saturday Mom arrived. I won't ever begin to be able to thank my mother enough for dropping everything and flying across the world to be at my side when I fell ill, or for everything she did and had to endure herself while here, so I'm just going to mention how awesome it was to not only have mom time, but to be able to pick her medical knowledge brain, since she's been an RN for forever. I'd had my last IV dose of prednisone the day before and my discharge status was pretty unknown, because of the change in my doctor, but we were hoping I would be given at least one more day to readjust.
I met Dr. Victoria Mifsud that afternoon shortly after my mother came in, and I was instantly reassured I was in the right place with the right doctor for me. She spent a good long time with us answering all the questions that we had managed to come up with, explained the disease, reviewed my MRI scans again for the benefit of my mom, and let me know what treatment options were out there and then talked me through them and helped me pick the one we thought would be best for me. We decided on Gilenya, which is one of the first oral treatments approved for MS. Because the first dose of Gilenya has to be administered under supervision, we agreed that it would be best for me to stay in the hospital to just go ahead and get set up with long term treatment as we were only waiting on one more test. Dr. Victoria also got me set up with a few other doctors I needed to see while I was in, as well as an occupational therapist to help me with the new challenges that MS and being functionally blind in one eye (at least temporarily) would bring.
I wound up being discharged earlier than expected because something happened with the test getting shipped to the wrong place, and what should have been results in days would have been weeks and we didn't want to keep me in the hospital that long. I was relieved to finally be going home. I'd never been hospitalized before this experience, and by that point I was pretty tired of it. Cleveland Clinic may have been the best possible hospital experience I ever could have asked for, but one can only sit in a room for so long...
Mom, Jon, and I piled into the Kia and headed home. We had celebratory Burger Fuel that night as I was starving and sick of hospital food, which honestly wasn't bad, but had gotten predictable and bland. I even avoided the bun knowing that I probably didn't want to try sneaking gluten like I have been (I was diagnosed gluten intolerant three months ago) and messing up my stomach, since I'd been restricted to a strictly gluten free diet while I was in the hospital. I felt fine. I felt great to be home.
I had no idea what was coming with the rest of the prednisone, despite warnings from both my mother and the pharmacist who'd dispensed it that it was a horrible drug. I'd been taking it in the hospital and doing okay, right?
Wrong, but that's a story for another time.
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