Week 3 Update

Hello, hello!

It's been a pretty eventful week, I suppose. All things considered, of course.

So, everyone's been asking me on Twitter and Facebook about my neurologist's appointment. The truth is, I've been so disheartened by the news that I've been sort of Meh about talking about it much. I'll be honest, I walked into the appointment hoping against hope that she'd have a diagnosis and a magic pill/potion that would fix me.

I'm guessing you've figured out by now that it didn't happen.

First things first, the spinal tap came back as inconclusive. Meaning, it can't confirm or rule out Multiple Sclerosis as a diagnosis. Evidently there are certain bands of proteins that they were looking for. If they show up in the spinal fluid and NOT in the blood, it's pretty indicative of MS. Well, lucky girl me, the proteins show up in both my spinal fluid AND my blood. Which means the diagnosis can go either way. I could have MS, or I could not. The only way to know for sure is to wait and see if I get additional occurrences. GREEEEAAAT, that was exactly what I wanted to hear, doc, thanks.

The current diagnosis is ADEM - Acute Disseminated Encephalomyelitis. I'm going to borrow from myelitis.org to explain what that is.

Acute disseminated encephalomyelitis (ADEM) is a neurological disorder characterized by inflammation of the brain and spinal cord caused by damage to the myelin sheath. The myelin sheath is the fatty covering, which acts as an insulator, on nerve fibers in the brain. ADEM may occur in association with a viral or bacterial infection, as a complication of inoculation or vaccination, or without a preceding cause. Onset of the disorder is sudden. Symptoms, which vary among individuals, may include headache, delirium, lethargy, coma, seizures, stiff neck, fever, ataxia, optic neuritis, transverse myelitis, vomiting, and weight loss. Other symptoms may include monoparesis (paralysis of a single limb) or hemiplegia (paralysis on one side of the body). The disorder occurs in children more often than in adults.

Thanks to the inconclusive spinal tap, we still don't know WHY this happened to me. And we still don't know if it's going to happen again. I'll have an MRI ever so often to watch for additional demyelination.

My vision is improving, which is awesome. I still have the double vision, but I'm getting moments of stillness more often. My balance is improving, too. I only use the walker/wheelchair when I know I'm going to be covering big distances, but other than that I've been wobbling around the house on my own two feet. I still have no temperature sense on my left hand side, though. I was holding a mug of tea tonight, and one hand was nice and toasty, and the other could have been holding a cup of lukewarm water for all I could tell.

Oh! And random oddness? Got a mosquito bite on my left leg. Could feel the itch. Couldn't feel the scratch. Yeah...that sucked exactly as much as you think it did.

Dr. R and I also talked about recovery timelines. She says that most patients reach 80% of their baseline within 6 months, and have up to 2 years to gain that additional 20%. A medical journal I found states that full recovery is seen in 50%-75% of cases. Those are pretty good odds, I think. And I'm going to work my ass off to be in that range.

There are a couple things I can do to improve my odds. The first is starting therapy. As soon as I get the authorization from my insurance company, I'm going to start physical therapy and vestibular therapy. Hopefully the combination of the two will get me strong enough to return to my regularly-scheduled life asap. Secondly, I have to be careful about what I eat. Because of the disease, my immune system can choose to spontaneously overreact to anything foreign - ie, extra vitamins/supplements, preservatives, processed foods, etc. I'm supposed to stick to healthy, whole, as natural as possible foods. Which, I think we can all agree, is a good healthy decision anyway, so I'm not fussing about making the change.

Despite the fact the Dr. R says it's not environmentally based, I'm sort of on freakout-mode about the chemicals in my everyday life. Especially shampoos and things that go on my head. I mean, that's a fraction of an inch away from my brain! So, even though there's no indications per the doctor, I'm switching everything that goes on my head. And I've discovered exactly how challenging it is to find headcare products that aren't loaded with scary-sounding chemicals that I can't pronounce. I'm compromising by using natural babycare products. They smell good, and I figure if they're safe for newborns, I'm probably pretty clear of anything that may be hazardous. Luckily, my hair is so short because of St. Baldrick's, so I don't need styling products or anything.

Now would be the appropriate time to share how very, very thankful I am for my insurance plan! I met my deductible and co-insurance on my first trip to the ER, and though I can see my medical bills piling up in my insurance records, I'm not being charged for it. I can't even imagine if I didn't have insurance right now, oh my gosh.

I'm also EXTREMELY grateful to the amazing people in my life. I've received many kind cards, texts, and notes of encouragement and support, lovely drawings from my friend's children, and offers of help everywhere I look. I'm a lucky woman, and I know it. I couldn't do this without the love and support I'm getting. And if you happen to see the stunning creature I call my roommate, give her a hug, would you? Because she's picking up all the slack around the house, and taking care of me, and I just think she's wonderful.

Wow, this got really long really quickly. Sorry guys. If you're still reading, thanks!

Two Week Update

Two weeks. I really can't believe it's been two weeks since I... shoot, I don't know what to call it. Got sick? It doesn't really seem appropriate; this isn't like a cold or flu. The neurologist says that I have a brain injury, technically, but I can't even say that because it's not as though I got hit on the head, y'know? It's been two weeks since my brain hit the self-destruct button, how'thats that?

I had a doctor's appointment on Thursday where I met the woman who is going to be my new GP. The hospital about flipped when they found out that I didn't have a regular doctor, (that's what the same-day clinic is for!) so I had to get on the ball and get one asap. Dr. C seems nice enough. You know, though, it's almost amusing to have an illness(?) so serious that it blows the mind of the staff. The nurse who did my preliminary was shocked, and even the doctor was extremely concerned and amazed at the extent of my symptoms.

I'm getting pretty frustrated with my vision. I've noticed that I'm worse in the mornings; I wake up really dizzy, and the room spins. Even closing one eye leaves the other eye moving without my control. It tends to improve as the day goes on, and I can at least have a few minutes of stillness later on. And there's a spot in my vision about a foot in front of me where everything is clear. Closer than that, or further away, it's all divided again. I'm not sure what's going on there; I don't feel like I've had much improvement in a few days. I'm definitely going to have to talk to Dr. R about it when I see her on Tuesday.

Mobility is improving though! I practiced walking on my own yesterday. I think I walk like a toddler. L says that I walk like I'm drunk. The right side of my body is all jerky and uncoordinated, but I can shuffle along as long as I go slowly and I have something to grab onto in case I lose my balance.

I really want to keep moving and doing as much as I can. I don't want to sit here in this chair and get worse or weaker because I'm not doing anything. My hands have been weak and uncoordinated (I think I said before that writing is a challenge?) so I've been trying to use them as much as possible. I got some really thick, chunky yarn and I'm using some large knitting needles, and I'm just trying to keep my hands active. With my sight being so awful, it's been interesting, but I'm not really looking for a finished product, I just want to keep trying to get stronger.

I'm worried about my job; I've been gone for two weeks now. My supervisor, of course, knows what's going on, and I've already filed for an emergency medical leave and job-protected status. I'm not worried about losing my job, but I'm stressed about what everyone's thinking about me missing so much work. People there sort of made me feel like shit when I took so much time off when my mom was dying, and I feel like I'm going to be walking back into that when I get back...assuming that I GET back and that this is something I can heal from.

That's...really about it. Next on the doctor agenda is a meeting with my neurologist on Tuesday. Hopefully she'll have some answers for me, or at least let me know how I'm progressing in relation to other patients that she's seen with similar issues.

Can I call in sick to a doctor's appointment?

Today's been a bad day.

I woke up horribly dizzy and disoriented with a throbbing pain in my head.I've been trying not to take the pain pills they gave me because they make me even more dizzy, but damn, I didn't have a choice. I made a toaster waffle (being able to pull a hot waffle out of the toaster and not feel the heat at all IS a cool feature) and took the pills.

And then my dad shows up.

I'm grateful he's checking on me, and know that he's really concerned. However, it makes me feel even worse to have him so worried about me, and to see the disappointment on his face when he realizes that I'm not getting any better. I'm TRYING. I'm doing everything I can but it's my fucking brain that's not healing. I can't DO anything but wait, and his constant hounding me for more answers ("What did the doctor say? What's the worst case scenario here? Did she talk about laser surgery? Your mom had laser surgery you know.) is making me stressed out and cranky.

After he left, I was feeling the effects of the pain pills, so I went to bed and fell asleep. An hour later he calls me and wakes me up to ask why the spinal tap results are taking so long to come back. Because a distant relative I don't even know is asking him and is "concerned".

This isn't Grey's Anatomy. Diseases aren't diagnosed and healed within 48 minutes, and my neurologist sure doesn't look like McDreamy. Tests take time to come back, that's the way it works. And even when the results come back, it may not be a diagnosis. If it's not MS, it's something else, but the only way to rule that out is through additional tests.

My vision is improving slightly. If I tip my head and concentrate really hard, I can get my vision to come together for a few seconds. It's progress, and it's more than I could do a week ago, so I'm thinking it counts as improvement. Or I'm just becoming used to my new condition. I've mainly just been closing one eye and looking through the other.

My right hand really concerns me. I can't control it like I used to. Big movements aren't a problem, but anything that requires precision, I can't do. When I right, you might has well put a crayon in my hand and call me a three year old. Typing is hard; I can't bend my fingers quickly, so I'm sort of straight-finger-punching the keys. I'm a writer and this REALLY concerns me. I may have to relearn how to write... I'm 32.

I have a GP doctor's appointment tomorrow, and I really don't want to go. It's my first time with this doctor, and she's not seeing me for any of the neurological things, so I'm going to hobble into her office with one eye shut, using a walker, half dizzy and disoriented, and.... and what? I don't want to go, but it's too late to reschedule now, so I guess I'm stuck.

Ugh.

Update, week one.

So here we go, it's officially been more than a week since this happened to me.

I actually don't have much new to share.

I've enabled my blog to accept voice-to-text from my phone, so please be forgiving of grammar and spelling crimes committed.

I still can't see clearly. That hasn't improved one bit. I still have double vision. All of the 'switching from one eye to another' has been bringing up horrific headaches. It's just easier to keep my eyes closed all the time.

Sensation is still missing on my left. It's the weirdest damn thing, and I wish I could explain it better. I can feel that something is htappening, but couldn't identify the sensation. This morning I woke up completely uncomfortable, but couldn't figure out why. Turns out, the half of my body that can't feel was outside of my covers and freezing cold, while my brain thought I was warm and cozy because the rest of me was under covers.

In the car, I can feel the air of the A/C moving on my body, but couldn't tell you if it was hot or cold. I can hold a bowl of icecream in my left hand and feel the moisture dripping down my hand, but can't tell if a dollop of ice cream has fallen out on my hand.

I only fell over twice today when walking with my walker. L laughed, but for me, that's an improvement. I still get insanely dizzy, the room spins and I just go.

I've been getting weird flashes of 'lightning' through my left side. My optimistic side is hoping that the nerves are reconnecting, but I have no clue.

We still have no answers as to what's causing this. We have no answers if it's going to go away, or when.

Today was a bad day. I'm scared that this is going to be the rest of my life. I'm scared I'm not going to get to see again, or do the things I love without help. I keep thinking of all the things I wanted to do and I may have wasted my chance.

I was offered an opportunity I've wanted for YEARS. I had to turn it down because I can't accept it in this condition. I sobbed when I hung up the phone. It's just too cruel.

L has been amazing with helping me. She does everything I can't, even grocery shopping today. She's fabulous, and patient, which I need right now. But I know she's scared, too. I feel so helpless. Even the things I manage to do take so much energy and effort. I filled a bottle in the soda stream today, and discovered I'm not strong enough to tighten the seal, so the water got everywhere. Afterward, I was exhausted, just from getting up and doing it.

I'm so frustrated.

I want this to be over. I think I could handle the rest of my symptoms much better if only I could see.

The idea that this could be it, this could be what life is like for the rest of my life is overwhelming.

Sorry to be lame and depressing today.

This is What I Know For Sure

This is my story.

Keep in mind that as I write this, I can only see a blurry vision where the screen should be. My fingers can't really feel the keyboard, and the once-effortless muscle memory that let me type flawlessly (or near so) is gone. This is the result of the last 5 days of my life.

Friday August 10th started like any other day. I got up, I went to work. Around 10:30, my mouth started tingling on the right side. I'd woken up with a pain in my neck, which I had chalked up to sleeping funny, came back to an excruciating degree. Suddenly, I grew lightheaded in my chair, and when I stood up, I lurched for the door. I went to the freezer to get an icepack, and thought it really odd that no matter what I touched, despite the freezer being covered in icy food, nothing felt cold. I didn't have time to think about though as I grew nauseated and barely made it back to my bed before collapsing in pain.

It passed about 5 minutes later, and though I still felt 'off', I made it through the rest of the shift, signed off, and told my roommate I was collapsing in her room to take a nap.

I napped about an hour, and the moment I woke up, I knew something was very,  very wrong. The tingling that had started in my lips had move through my head, down my shoulder and all the way down the right side of my body. I called out for the dog, and my lips wouldn't move right. My voice sounded raspy and hoarse, and when I stood up, I couldn't get my legs to move under me. I grabbed for my phone any my fingers wouldn't work. It took about 5 tries, but I was able to use the voice-to-text feature to message my roommate, L., that I needed to go to the hospital. She messaged me back asking if I meant now, if I meant I could drive myself, but I just couldn't make my voice answer. She figured it out though and came home immediately, and whisked me off to the ER.

By the time we got there, my head was spinning, I couldn't sit up straight, and I thought I was having a stroke. For all the world, it felt like I had a magnet attached to my right ear, and I couldn't stop my body from moving in that direction.

The ER on Friday... I won't say much about, other than the staff was obviously rushed, busy, indifferent, and uninterested in a proper diagnosis. They decided it was a migraine, and sent me home with painkillers and antinausea meds. Besides the fact that I couldn't maneuver successfully from the bed to the wheelchair without falling over, they sent me home.

Saturday and Sunday, I laid on a cot in our living room, unable to do much at all. If I sat up, I'd fall over. The pain was unrelenting. Going down the hallway to the bathroom was like playing a game of pingpong between the walls and floor, whether walking or crawling. My vision was completely divided; move each of your eyes to the opposite diagonal - that's what I was seeing at the time. The muscles in the right side of my body were almost unresponsive when I would move around - L. said I didn't have my "sea legs", and had to use her body weight to support any movement I made.

Side note - on Sunday, I tried to give myself a bath, thinking it might help relax whatever the issue was. I held my left hand under the water, thinking it was a nice, mid-warm bath draw. When I crawled into the tub, my right side of my body found out that the water was actually scalding hot! Later, when the water cooled and I went back into the tub, it was a surreal experience, as if a line was drawn down my body. My right side was warm and cozy, and my left side could feel nothing at all. Just the motion of the water on my skin.

Monday morning, I called the neurologist the hospital referred me to for my "migraine", and the receptionist informed me that not only is he not seeing new patients, but he's not even in the office all week. The recommended option was to go back to the hospital and to tell them, per the receptionist, that the doctor says  this is NOT a migraine. So, Monday, I landed back in the same ER.

Friday night to Monday morning in the ER was a completely different story. For starters, the doctor actually sat down in the room with me and SPOKE to me, and listened as I tried to explain every little thing that was happening, including the fact that I couldn't tell the difference between hot and cold in my left side.  He immediately ordered an MRI with contrast, and told me that I was going to be admitted.

The next thing I knew, I was laying in the MRI machine, which, for the record, is DAMN loud. Even with earplugs in and memory foam surrounding my head, it was unbearably loud. I knew they found something when I was in there, because a 30-45 minute procedure took 1.5 hours, and the tech kept coming back with promises of "just one more scan of your head...just two more of your neck and you'll be out...one more of the spine...okay, we need another scan of your head...."

After the MRI, I was assigned a neurologist, Dr. R. She very nicely explained to me that they had seen demyelination of nerves in the part of my brain which controls vision and motor function.

Okay, so, in English? Picture the nerves in your brain like wires, each insulated with it's own protective sheath. With any demyelating disease, the sheathes on the nerves spontaneously peel back, leaving the open nerves to cross their signals, with disastrous results for the human body attached.

My official diagnosis, for right now, is Demyelinating Disease of the Central Nervous System, unspecified. We know WHAT is happening to the nerves in my brain, but we just don't know WHY. That's the "unspecified" part of the program - and it could be anything from MS to an unrelated simple virus.

Dr.R started me on a high-intensity steroid IV at the hospital. I also found myself in a pretty snazzy hospital room in the new hospital wing, (I would have enjoyed the giant plasma touchscreen TV on my wall much better if I could have seen it clearly...), and poked with a different needle every two hours. I had shots in my stomach, blood draws in my arm, IV flushes, finger sticks, my own personal heartrate monitor, and a staff of nurses and aides who watched my every move.

And I had a kick-ass roommate, L, who never left my side through all of the madness.

On Tuesday, I had a spinal tap. Now, like just about everyone, I've heard how incredibly painful it can be, so I went into the lab full of fear and tears. I got to tell you, they have a high-tech lab at the hospital I was in. I lay flat on my stomach while an xray scanned my spine and the doctor found the perfect place to stick the needles. Weirdest compliment I've ever received, per said doctor? "You have the perfect spine for a puncture!" Um.... thanks? What does one say to that? The actual puncture itself didn't hurt much at ALL. I think I'm an oddball, or maybe it was the benefit of my nervous system tearing itself apart, but halfway through, the doctor leaned over my shoulder and said, "Um, so normally my patients are in tears right now, but since you're not, would you like to see what your spinal fluid looks like?"

I said sure! I mean, who hasn't been curious about such things, right? So let me tell you, your spinal fluid looks exactly like water. Or, it SHOULD look like water, barring any diseases etc. Yup. I don't know what I was expecting, but now I know, and you know. It looks like water.

Wednesday, today, after one last round of steroids, I got the news I didn't want to hear; I was being discharged. There was nothing else they could do for me in the hospital; I'd had all the medications they had to give me, and there was nothing else they could treat me for.

Let me paint this picture:

• My vision is still blurry and divided. If I close one eye, I get a single image. If I tip my head slightly to the right, I can get a clear image for a brief moment, but beyond that, I have two distinct views.
• The numbness and tingling in my right side has subsided somewhat, but still feels like it's on pins-and-needles. 
• My left side cannot tell the difference between hot and cold. The nerves are completely misfiring with the sensations they DO feel. Resting my skin on this leather recliner feels like I'm resting it on thumbtacks - it's painful. Scratching my dogs fur felt like running sandpaper over my nerves. 
• My mobility, though I'm not stumbling to the right like I was on Friday is limited. I have to use a walker, and walk very, VERY slowly. My right foot isn't stepping properly; it wants to cross over to my left side. My hands aren't responding like normal; I'm markedly weak on my right especially. Gripping is hard to do. Any motion requires ridiculous amounts of concentration. 
• My speech is actually somewhat back to normal; a result of the massive amounts of steroids. 
• I'm exhausted, mentally and physically. 

So where do we go from here? 

Well, I have to wait 12 days for the results of the fluorescence test on my spinal fluid to come back. This will scan for many things, including Multiple Sclerosis. 

In the meantime, I wait. And I hope. Dr. R. says that my nerves should regrow their myelin sheathes soon, but it's a matter of time. With luck, this will restore my body to full function. The downside is that the second sheathe will not be anywhere near as strong as the first, and I may continue to have problems as a result. For example; if I catch the flu this winter, instead of my body getting the signal to vomit, my nerves may decide to make me numb, dizzy, or worse, instead. 

While these nerves are repairing themselves, I can literally do nothing. I can't walk. I can't drive (obviously). I can't see clearly. My motor skills are all extremely impaired. I'll be out of work until I'm cleared by Dr. R. to return, which she says will probably be about a month, if all goes well. Until then, I'm on short term disability. 

If the spinal fluid tests negative for M.S, (which is what we're hoping for, by the way!!!), we'll continue on with other tests to figure out why this happened to me in the first place. There are so many possibilities, everything from gruesome debilitating illnesses, to random chance. When you're under stress, your body can react in unpredictable ways. Responding to a simple virus, my immune system may have decided that instead of attacking the virus, it was going to attack it's own nerves instead. This could have happened once, as a fluke, and could never, ever happen again. (As she's seen in another patient in my age range who had similar symptoms, was very very sick for a long time, and then recovered fully with no replapses). The bottom line is, we don't know what's going on, or if it's going to happen to me again, or how well I'm going to recover from this round. 

All we can do is wait. And we all know how shitty I am with patience, right?  

So here we go. This blog is about what happened to me, but more importantly, what's happening next. I'm going to document this whole process of discovery and recovery. Partly to keep me from going insane with boredom as I can't do much else, (even though seeing and typing is incredibly taxing and exhausting right now), partly to keep everyone in the loop, and partly because maybe, just maybe there's someone out there who's going through this too and could use an ally.