Lesions of Doom

So I haven't posted in a while. There was Christmas obviously. I was extremely busy baking/eating cookies. So there was that.

Christmas was awesome. Last year Caitlyn was very young and she didn't really get it, but this year she was all about the tree and the lights and ripping the wrapping paper off of her presents. As a bonus, I got the Friday before and the Monday after Christmas off of work and the next Friday and Monday as well, for New Year's Eve and Day.

You would think with a 4 day week, followed by a 3 day week, followed by another 4 day week, that I would be... well rested or something. But I wasn't. In fact, by the Monday after Christmas I had gone from feeling generally run down to flat out sick.

The symptoms started off innocent enough. I was exhausted for 2 straight weeks but I had been running around getting ready for Christmas, so I didn't think anything of it. But then that Monday after I woke up from a nap I shouldn't have needed to a call from Rodolfo where I was slurring like a raging drunk. He thought I was making fun of his accent, actually. I figured it was just a side effect of being excessively tired and brushed it off.

That Tuesday after Christmas, I went to work and noticed something unusual. I was still slurring. Still, I decided to give it one more day. On Wednesday it hadn't gotten any better and I left work early to go see my doctor.

After getting a prescription for bloodwork and an MRI, I went home and promptly puked my guts up. I spent all day Thursday in bed sleeping or in the bathroom tending to my various exploding orifices. Friday morning I felt a bit better, but by evening the slurring was back, along with some dizziness and head rushes that made it very hard to focus.

I did my best to ignore the building fatigue and scary neurological symptoms for the entire weekend until Monday, when I realized I would need that MRI. Because it was the Monday right after New Year's Day and my insurance company was not open to approve the MRI and with the slurring getting significantly worse, I was sent to the ER.

And that's where I've been since Monday. The fucking hospital.

First things first, they wanted to see my brain. I had a cat scan within a few hours of getting to the ER, but that showed nothing. I would need a more detailed scan, an MRI (which is what my doctor wanted to begin with, but apparently MRIs are fucking hard to come by). Unfortunately, there is only one MRI machine in the hospital so I would need to stay because they couldn't schedule my test until 6pm the following day. Awesome.

Since I had a full day to wait anyway, my doctors decided to explore some other possibilities. My family history of heart disease and my personal history of an unexplained stillbirth made stroke a real possibility to check off the list. With no numbness or uneveness on either side and with my ability to write and type in tact, they quickly dismissed the stroke theory. I mean, it didn't stop my doctors from doing an ultrasound of my carotid arteries, but that only confirmed what they already knew: I hadn't had a stroke.

Still stuck in a cardiac state of mind, the next test I received was an Echocardiogram, an ultrasound of my heart. All clear there too. Now I would just wait for the MRI that was sure to hold the answer. The answer obviously being a gigantic tumor or ready-to-burst anureusym. Actually, at this point I had decided that the tumor must be small or the cat scan would have caught it. So I spent the next 12 hours or so thinking about all the times I've heard the word "inoperable" on Grey's Anatomy. Obviously it would be inoperable. And Dr. Shepard would not be around to challenge convention and take me on just to prove how badass he is. And Dr. House would not be around to call him an idiot and decide it wasn't a tumor at all, but a pocket of easily disposed of brain-eating parasites that would need to be reported to the CDC ASAP.

Day 2 of hospitalpalooza took me to the MRI that would surely be my ticket to either home or untimely death. They squeezed me in early, around 3pm and took fancy pictures of my brain, which they promptly refused to show me.

Can I talk about MRIs for a minute? Specifically, how shitty an MRI is. I mean, it's a total bitch move to complain about a test that doesn't even hurt, I know, but this bitch is a bit claustrophobic so being trapped in a giant plastic coffin where your head is strapped in so you can't move and its so loud it feels like a building is about to collapse on you? Yeah. Uncool. I was lucky that the techs were cool as hell and gave me updates on how long I had left (the test took about 20 minutes. In a coffin), and the awesome LITE FM music streaming in the headphones that most certainly did not drown out Tower 2 collapsing around me, definitely helped. But still. Jaclyn did not enjoy MRI time. Still, I powered through and felt proud when I never squeezed the little panic attack ball they gave me in case I felt I could not continue. Aces.

And then I got some news I was not expecting. I would need ANOTHER MRI. Because it was unclear whether or not my brain lesions (or brain legions, as I texted at least half a dozen people when I got the news. Yeah. Mental acuity!) were actively inflamed and I'd need a contrast dye injected into my veins to see if they would light up to indicate that they were blatantly inflamed and the cause of my symptoms. This also meant another night in the hospital. Fantastic.

And really, what a night it was. The days weren't so terrible. My friends and family came to keep me company and I was still pretty fatigued, so laying in bed watching shitty TV wasn't so bad. And then I got a new roommate.

My first roommate wasn't so bad. She was an elderly Hispanic woman with lots of visitors and a quiet nature. She was released by the end of my second day and a new roommate appeared. A very, very bad roommate.

I felt bad for her. Really I did. She apparently has some kind of chronic pain condition. I'm sure that's awful. But I was not in what you would call a good state of mind. I was just told that I most likely have Multiple Sclerosis, a chronic condition that slowly eats away at your brain and nerve impulses until you have very little function left. It can take years, and lots of people live relatively normal lives in between flare ups until they have significant deterioration in old age, but still. This is not a diagnosis anyone wants to hear. MS is fucking terrifying.

So here I am, contemplating the coming years, the fact that MS isn't just possible, but probable based on my symptoms and brain scan. Wondering what parts of my daughter's life I will miss because I'm too sick to participate in them. Wondering if I'll be around to see my grandchildren. All of these things are bouncing around my head when roommate number 2 shows up.

Roommate number two would like for Jesus to take her. Immediately. She spends a majority of the evening moaning in agony and telling Jesus she's ready to go. She won't use the nurse call button when she needs a shot of painkillers or a bed pan. Nope. She simply moans "HELP! PLEASE HELP ME! SOMEONE HELP ME! I CAN'T TAKE IT ANYMORE". This happens approximately every 5 minutes or so for the duration of the night. This is briefly interspersed with her begging my forgiveness for being so loud. Yeah. Jesus can hear your thoughts I bet. You don't need to pray so loudly. But I totally forgive you.

The following morning, after sporadically sleeping for a grand total of maybe 4 hours, I'm awakened at 5:30am so the nurse can take my vitals. Apparently it's very important to get a patient's blood pressure at the fucking buttcrack of not-even-dawn. My roommate, who had finally been sleeping for a couple of hours, is also woken for vitals. About this time I start to wonder if Jesus is still taking requests. My roommate certainly seems to think so, because she's asking for his mercy again.

After spending half the day waiting for my MRI, my visitors made thoroughly uncomfortable by the desperate moans coming from the other bed, it's finally time for my test. Another half hour inside the coffin of noise and death is accompanied by the exciting sensation that my cheeks are flapping back and forth. Because an MRI is a giant magnet and the dye they use is made of iron. It's kind of funny because they had a 20 question long checklist of metal things they have to ask if you have in your body before the test, and yet then they deliberately filled me with metal and stuck me in a giant magnet. Still, I can't complain too much. The sensation was certainly weird, but definitely not painful. I was disappointed to hear that I shouldn't expect to have silver pee, but I suppose that is a disappointment we all must face at one time or another.

Before my test, I was told that active inflammation would cause the dye to light up the lesions (of DOOOOOOOM) in my brain and virtually confirm MS. After waiting several hours for results, a doctor told me that they had seen confirmation in the MRI and that I should expect to hear more from the neurologist assigned to my case.

If I'm being honest, I was kinda crushed. MS is terrifying. But with the help of my family and friends, who researched the crap out of it, I came to realize that it wasn't quite the death sentence I was making it out to be. It is highly treatable and with my early diagnosis and proper treatment, I could delay any significant loss of function for 20 or more years. I was ready to fight this shit. I was forming a plan of attack.

And then the neurologist came to talk to me and explained that sometimes you have to treat people like children because the other primary doctor assigned to my case had only skimmed the comments on my results and hadn't bothered to thoroughly review them. She couldn't say that it wasn't MS. What she could say though, was that the lesions I have are very small and not actively inflamed in any way. This was not a confirmation of MS, as I had been led to believe.

I could still have it. We are waiting on some bloodwork to rule out a few other things. Lyme disease is a possibility, though one I don't really expect to hear, because I've only ever been bit by a tick once, and I was maybe 5 years old at the time. The neurologist was adamant that Lyme can be asymptomatic for years, but I just don't think that is the case with me. Based on my brain scans, which she was kind enough to show me, I don't have enough lesions to say with any certainty that I have MS. There were about 4 or 5 and they were very small. This is my first incident, and I'd need to have at least 2 since MS is considered recurrent. But there is a plan in place.

First, despite not seeing active inflammation, I was admitted to the hospital for 3 days of high dose steroids (I know you were probably thinking I was already admitted, but I was in an annex of the ER, so technically I was still their patient. With the official admission though, I scored a room change and a much quieter roommate). I'm getting the steroids every 6 hours and felt an immediate difference with the very first dose. My energy is returning. My dizziness is gone. My speech is slowly returning to normal. I still almost typed "legions" every single time I referenced it here, but I guess maybe I lost a few IQ point along the way or something. I can live with that. So maybe there wasn't active inflammation, but the improvement certainly seems to imply there was some inflammation in those lesions that is being reversed by the current treatment.

While discussing the possibility of the steroid treatment with my doctor, I was given a few things to think about. Possible side effects. Rarely, she told me, people have psychotic episodes while on them. Roid Rage I suppose. I would call it Hulking out. I'm happy to report that my mental faculties are still in the right order and my pee is neither silver nor green (yes, in my head the Hulk pees green. And when I expected silver pee, I kept picturing the Silver Surfer and mercury-like urine. I'm like a fucking Robo-nerd up in here).

So that's where I'm at. I have a referral to an MS specialist when I get out of here in a day or two, my speech and energy levels have mostly returned to normal and I do, in fact have a plan for when I go home. I may not have an official diagnosis, but I know that MS is still on the table. And I know how important it is to stay physically active and mentally sharp. So I'm hoping to hire a personal trainer at my gym. Nadine downloaded Words with Friends on my phone and I've been playing that. I won't shut the fuck up because, I know the more I talk, the more I blog, the more I use my brain in the ways I know it is capable of, the more I am building THOSE muscles, just as I'll build muscles in my arms and legs when I work out.

I have a life, a husband, a kid to think of. I have a phenomenal family and amazing friends who won't let me slide into self-pity. I have the will to fight this, whatever it is. I'm still disappointed that my pee didn't come out like mercury though.

So what about you guys? Any information I should know about? I'd love to hear what you have to say!