Thursday, January 5, 2012

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 and 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, comtemplating 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 approxiametly 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 steriods (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 steriods 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!

11 comments:

AbsoluteMommy said...

I'm. Fucking. Beside. Myself. I can't believe this shit is going down. I just cried and lmao at the same time. I live you and this blog. If you write everyday I'll read it! Even if it's a fucking grocery list. Seriously!
I thinking good thoughts for you! I'd say I'd pray but pets not get cray-cray, plus sounds like your roomy was cornering the market on that one!
Hugs
Megan

Gia said...

Holy shit, what a rollercoaster. I'm hoping for the best for you --keep us updated!

Cheryl Ahonen said...
This comment has been removed by the author.
Other said...

Girl. I am so sorry that this is happening. You are in my heart and I am sending you loving warm healthy thoughts.

And if it's any help, both my bf's mom and my bff's dad have MS. They live kickass awesome lives and have more good days than bad days.

PS. Also you have way more patience than me re: the roommate. I would have thrown a plastic water pitcher at the wall. But I'm diva like that.

<3,
Nadine's friend Cheryl

Front Desk Ninja said...

Dude. I was wondering if you left me or something, and then I started reading this and I had to cheat and scroll to the bottom to make sure you weren't posting a "ps I'm dying" post.

You should know better than to scare us like that. Always start with "I'm OKAY" and then continue on with scary shit.

Words with friends is the motherfucking bomb.

I'm with whoever said we'd read whatever you wrote, even if it's the grocery list.


I too, was sad when my pee didn't turn cool colours when I had my 6 MRI's. Although! When you have a CAT scan, or at least here in Canada when you do, and they make you drink 923810 litres of disgusting dye, your pee *does* turn bright orange. I found that to be the best part of those experiences.

We're all here for you.
I'll offer to kick your ass in Words with Friends whenever you want. ;)

mistyslaws said...

Girl. I am so sorry. That is truly frightening info, but it sounds like your head is in the right place about it. It is definitely NOT a death sentence, as I have many close friends who have been not only surviving, but thriving with MS for many many years. Yes, if you indeed have it, you might have some down days. But they are always managable and you can have an exceedingly active and enjoyable life, full of family and friends and catching all those significant moments of Caitlyn's. Try to stay possitive and know that you have a whole blogging community out there, and although we couldn't be in the hospital room with you, we are with you in the ether and you are in our thoughts.

You are one of the toughest mother fucking chics I've had the pleasure of "meeting" in this blogosphere. You keep up the good fight and keep on being kick ass. MS will be scared of you and thus will not cause you any problems, I guarantee it!!

((Big Hugs))

Jen said...

MS is NOT a death sentence. My mother has been living with it for years and is a happy, vibrant 68 years old. I pray that all comes out well, but even in the worst case scenarios, please know that you are not alone. There are a bunch of us that (while we may be far away) would be there in a heartbeat if you need us. ((HUGS)) XOXO

AKD said...

I don't have any information, but I have awesome thoughts and prayers and warm wishes and hugs and buttplug-shaped children's show characters for you.

Mostly hugs.

Nadine said...

get the fuck out of the hospital already, I'm sick of going there.

Jaclyn said...

@Megan- My grocery list would be so pathetic. So pathetic. I would look like the worst mom ever. Thanks for your kind words. It's always nice to know I have people pulling for me.

@Gia- I will be updating as often as possible but I've been trying to rest while I've been in the hospital, since they refuse to let me sleep for more than 3 hours at a time without someone showing up to poke or prod me in some way. Thanks for your comment and I'll surely keep the info as up to date as possible!

@Cheryl- seriously, roommate came desperately close to getting her wish. I was so glad when they moved me! Also if you have the time and patience, I'd love some first hand info about MS. If you have any stories to share or treatments they tried, I'd love to hear about them. Feel free to email me and thanks for your comment!

@FDN- Don't you know anything about keeping an audience captivated? You remember when Titanic came out or are you too young for that? I mean, you know most of those fuckers die, but if the subtitle had been "Titanic: FYI Leo totally dies at the end so I hope you weren't expecting this love story to end happily", would you have even bothered to see it? I'm saying I'm gonna milk this bitch for every drop of blog traffic it's worth because temping god seems like a good way to start this year :) Ok, but really, thank you for being so worried. It's funny how close you can get to people you never even meet, but I do feel like we have become friends through these lovely little blogs of ours. My WWF account is through my Facebook, and I'm pretty new to it and don't know how to find people, so I will send you my FB info and you can friend me and we can do the dance of words and intellect and narcissism. I missed you my Ninja :)

@Misty- thanks for your kind words. Really. I'm trying to be strong and realize that being scared shitless and sliding into self-pity isn't going to do me any favors. It's always nice to hear other people say they can tell you have the strength to do it. Sometimes it isn't so easy to see that in yourself. I'm also desperate to hear some stories and treatments and plans that are working for other people with this disease, so if you have the time to email about your friends experiences, I'd love to hear about them. Thanks again, Misty. You are awesome.

@Jen- You are fucking awesome, by the way. I'm really touched by the outpouring of support on my teeny-tiny little blog. It's brought me a lot of comfort and strength. Like I said to a few others, I'd love some information about people's personal experiences with this disease, so if you have some time to send me an email about your mom's experience I'd love to hear about it. Thanks again for being here :)

@Angie- I have nothing but love for you and you know that. Thanks for your humor and love and for always being there, always getting me and always being a friend. It means more than you know. Also the children's character we always reference is Twist, and I don't need his retarded face in my butthole. You've just scarred that into my brain for life, and I've got enough brain problems :)

@Nadine- You know you have been my savoir in here. I may have jumped out a window otherwise. Especially when they tried to pull that restricted diet bullshit. Everyone needs a friend who will show up with a dozen top-notch cupcakes as a big fuck you to your doctor. Thank you for being here, for keeping me company for so many hours, for listening to my dad talk without initiating any bloodshed and for generally being the best bitch a girl ever had. I love you more than I can ever show.

On a final note, I'm out of this bitch TODAY, MOTHERFUCKERS!

And for those of you who don't have my email address (it's probably around here somewhere, but I'll include it just in case), it is hamburgercheeks57@gmail.com

MUCH LOVE TO ALL OF YOU. Also, fuck, these comments could have been a separate post of their own!

Front Desk Ninja said...

Your life isn't a movie! And you shouldn't be allowed to scare a bitch like that. There should be a rule. Or something.

Also, you can hit create game, and then enter a friends name or something, I think. My name on there is Jessamaca123 (yeah, I'm putting it out there on the big bad blogging world. Bring it, people. I'll play anyone. I'm that bored at night.)

Also, Word Verification isn't showing me a picture. I have to press the handicap button....