Day 8 - A Smile Twitch!!!!

I was just sitting here at my desk and I felt the urge to smile - a little smile, like Mona Lisa. And I felt the right corner of my mouth twitch!!!!

So much so that I ran to my purse and grabbed my compact mirror and tried it again. Another twitch into a smile!!!

Again!! And again!!

I can hold it for about a second before it gets really twitchy and I have to release it.

A teeny tiny little smile!!!!! On purpose. Only 8 days after onset.

YAAAAHOOOOOOOO!!!!!!

Day 8

Ok, the new eye patch method the eye doc showed me rocks my world. I was finally able to sleep last night through the whole night, and when I woke up this morning, everything was closed and feeling fine. The eye drops that were recommended, while not cheap, were certainly also awesome, and I will be using them in the day too. Tonight I'll get Preston to take pics of me while I make my eye patch so that maybe someone else out there can benefit from my experience.

I'm also thinking about getting him to take some pics with me making the same faces as last Tuesday so that we can get a week by week "progress report". People at work keep saying that I seem better to them, but I don't see it, honestly. It seems to me that maybe my face muscles have tightened up a bit, which may be causing my mouth to look less droopy, but there is no improvement in the paralysis, unless twitching counts. In fact, yesterday my eye seemed to be worse. I didn't really comprehend it at the eye doc (a strange thing I'm noticing with BP - often those around you are much more aware of your condition than you are, because you can't *see* what is happening to you, and everything *feels* off), but now I realize it was the case when I was there as well:

The eye doc says, "Wow, you've got it pretty bad. Close your eyes." Me closing my good eye. Her, "Yeah, your Bell's Phenomenon isn't even covering your entire iris. That isn't good." Me, "Oh, yeah, I can make it, see!!" Me closing my eye again, and consciously trying to roll my bad eye back in my head. Her, "No, sweetie, you can't." Seriously, because I thought Preston said that I could!!??!!

Anyways, I don't know if I was trying too hard or if I had already ticked off my eyelid that day or what, but it was the case when I got home as well - Preston noticed it too when I asked him. Today I'm noticing that when I'm going to manually blink (which isn't as much thanks to lovely eyedrops!), it feels like I almost have to pry the eye down to shut it - much more difficult than before yesterday.

Whatever that means!!

Hopefully some picture updates tomorrow.

Day 7 - An Appointment with the Eye Doc

Well, I had been reading around on the internet that maybe I should get an appt with an eye doc to help manage my eye - you know, to make sure I don't ruin it. I thought more practically that perhaps I could get some gadgets to make life with BP easier, and perhaps an ointment that didn't make me want to claw my eye out.

If you have BP, *definitely* go see your eye doctor. Best dr's appt yet. Seriously. She showed me how to make an improved patch for sleeping, told me all the kinds of drops and ointments to buy (review here after I've tried everything), and even agreed to order me an experimental "moisture chamber" which she's never had anyone use, but that I want to try. Awesomeness.

I did already have a bit of damage to my eye, so she wants to see me back in a month to make sure I'm not killing it. Yay!! Someone who actually cares what happens in the shorter term!!!

Whatever ointment she put in my eye today totally works. I've been at work 3.5 hours, and no eye-clawing pain yet, woohoo!!

Day 6 - Exhaustion

I'm exhausted today. I don't really know why. I've slept well the past two nights, but I've been in bed pretty much all day, sleeping on and off. Everything, and I mean *everything* sounds like too much work. Turning over? Too much work. Changing channels? Too much work. Eating? Too much work. I've just been sleeping on and off with my hand over my non-closing eye. Eye patch? Too much work.

Last night I did try some eye ointment, but I think I must have been allergic, because I woke up after about 4 hours with my eye hurting something fierce and when I removed my patch it was reeeeeeed and maaaaaad. I rinsed it out with eye drops and it stung like nobody's business. No more of that ointment for me.

Hope I can stay awake for work tomorrow.

Day 5 - Lots of Twitching

Well, I've taken to carrying a hand mirror around the house with me because I'm having quite a bit of twitching today.

Day 4 - Eye Woes and A Twitch!

Sleeping has been not fun so far with BP. The first two nights I tried taping gauze over my eye (paper surgical tape and standard gauze rolled up). The eye just doesn't want to stay shut and ends up open and staring at the gauze. This is actually really dangerous because I can scratch my cornea against the gauze. I feel like the real problem is that there isn't any pressure from the tape to keep the eye shut. So last night I went and bought a standard convex "pirate patch" from the local pharmacy. I placed a roll of gauze along the lash line of my closed upper eyelid and then another roll of gauze perpendicular to that along the inner corner of the eye for some pressure and put the patch over that. I woke up in the middle of the night with huge indentations in my forehead, but my eye was closed! I had an idea, though, and I replaced the gauze and then placed over that a pair of no-line underwear folded in half and then put the patch on top of that. This is definitely the way to go for me! I woke up with a closed eye, no lines, and more sleep than I've had since I got BP. Hey, I may be wearing underwear around on my face, but at least I'm sleeping!!

This morning I was standing in front of the mirror trying to smile at myself and the corner of my mouth twitched!! Just once, and I wasn't able to repeat it, but it is the first sign of life from the right side of my face since Tuesday!!

Day 3 - A Run

I woke up this morning at 2:40, after dropping off to sleep sometime just before 11. My eye was dry. I fixed it and couldn't get back to sleep. I tried snuggling Preston. I tried counting the seconds. I tried petting a purring kitty. I finally decided to get up at my normal exercise time (4:30ish) and go for a walk. Best. Idea. Ever.

It was a rather cool morning, and not raining, and I decided to just walk up and down my street (about .1 mi. each direction) in case anything medically weird went down. It didn't. I walked back and forth, back and forth, and then at the end of the 5th lap I thought it wouldn't hurt to run for half a lap or so, would it? Running felt so incredibly good. My face broke into half a smile and I felt like I could leap over the moon. I was instantly justifying running the next two odd numbered laps, which I did, to no less elation.

Then today at the neurologist's office, she told me it would be ok for me to continue on my normal exercise. After she told me that I have a complete paralysis and I'd be like this from 3-6 months. But still, my mind might not break knowing that I can still do good for my body. I can still push myself. I can still have goals. And the road doesn't care what I look like. And the darkness hides my twisted face. And at least it will be twisted into a half smile.

Day 2 - Evening - Parental Reaction

I just got off the phone with my mom.

When I was in high school she had surgery to remove her perotid gland. She was informed that one of the possible side effects was facial paralysis on the side of her face that the surgery was on, and she was really scared about that. She told me that I said to her, "Don't worry, Mom, I'll still love you even if your face is paralyzed."She told me today not to worry, that she loves me no matter that my face is paralyzed. (Of course, I mean, she's my mom!!)

But she did say that Dad didn't want to look at the pictures I e-mailed them.

Day 2 - At Work with Bell's Palsy

I'm having a rather no good dirty rotten bad day today. Yesterday too, for that matter.

Being at work with Bell's Palsy is interesting. First, you have to explain to everyone what happened to you. No, you didn't sleep on your face wrong, and no, you haven't had a stroke. What you have is caused by a virus, and while the virus may be contagious, the palsy isn't.

Then, being at work within the 48 hour of onset window you have to deal with your worsening condition.You go to the bathroom several times to cry. You cry because your eye hurts because it can't blink, it is dry, it is sore from you manually blinking it, and you don't want to wear your patch. You cry because it is getting harder and harder to speak around the palsy (you try saying Yom Kippur with the palsy!). You are having to be slower and more deliberate with your speech. You are fully embarassed. You walk down the hall with your head down hoping people won't look at you or speak to you or smile at you, but when they do, you have to tell the story all over again. Or just ignore the look of confusion and walk on. You cry because you just spent 30 minutes sucking your lunch through a straw, and now you've stressed out your face and the palsy seems worse, if that is possible. You cry because earlier you thought maybe your face responded when you told it to smile, but it is a phantom smile. You can't smile, you can only twist your face into something so horrible no one can tell you are smiling.

I'm thinking that maybe I should switch to 8 hour days until I can blink again. But 10 hour days are one of the best perks of my job, and I'll cry for the loss of that too, if it happens.

Please, please let the neurologist allow me to exercise. Otherwise send me straight to a mental health care professional, because the end of the rope is neigh.

Day 1 - Evening - Photo Fun with Palsy

Lopsided smile.

Big smile.

I always wanted to be able to lift only one eyebrow at a time.

It's all good with the Palsy.

Amber as Gene Simmons on Palsy.

Preston has taken to calling me "Palsy Bizzy". Bizzy was my nickname before...

You know, I think the hardest part of this is the mental aspect. Imagine waking up one morning with half of your face paralyzed. I don't know if everyone is this way, but a large part of my self-image has to do with the way that I look. I always found identity in my red hair. I was never super-confident... I never really felt pretty, and I was still trying to lose weight, but I had gotten to a point where I was relatively confident with how I looked. Imagine having that confidence shattered one morning when you look in the mirror.

Imagine that everyday tasks are suddenly very difficult. Imagine brushing your teeth when you can't close the right side of your mouth. Imagine taking a shower when you can't close one eye. Imagine having to manually blink that eye at regular intervals thoughout the day. Imagine having to tape it shut to sleep. Imagine trying to eat or drink when the right side of your mouth won't close. Imagine developing a lisp and an inability to say p b or f sounds over night. Then imagine that your husband's name contains both a p and an s. Imagine trying to smile at your husband and he doesn't smile back because he can't tell it is a smile.

Day 1

Saturday morning I woke up with an earache (right side).

Sunday my right scalp felt hypersensitive and my hair "hurt".

Monday I went to the doctor and told him that my viral throat infection from 3 weeks ago had never really fully cleared up and now this new stuff was happening. He looked in my ear and said that I didn't have an ear infection. He felt my throat and said that my lymph nodes were swollen. I told him I knew that - that they had been for 3 weeks. He looked in my throat and told me it was red. I told him I also knew that - that that had also been the case for 3 weeks. He said, "Three weeks is a long time, let's try a Z-Pak." A Z-pak is a short run of antibiotics.

That night I drank a bottle of water that tasted funny. It didn't taste funny to Preston (my husband).

Tuesday morning I woke up and the right side of my face was numb and partially paralyzed.

I proceeded to have a mild freak out, take an asprin in case I was having a stroke, and go to work. My face became increasingly less responsive. I called my mom. She called me back and told me that it sounded like Bell's Palsy and I needed to go to the doc as soon as I could get an appt.

I got to work. People asked me what was wrong with my face.

I called to make an appointment. They forwarded me to a nurse. I told her my face was paralyzed. She said ok. I said that I thought that was a pretty major change in my sypmtoms and I thought maybe I should tell someone. She asked me why I hadn't gone to the ER. I told her I didn't know, I was 26 and I don't just go to the ER. Plus the copay on the ER is pretty big, I was just hoping to see a dr. today. She told me for facial paralysis I needed to call 911. I told her why didn't I just drive over to the minor emergency center where my copay is only $40. She told me to have someone else drive me.

So *my boss* drove me over to the minor emergency center. Where they told me I have Bell's Palsy.

*** This and the first several entries of this blog are backdated. They are what I wrote as it happened. Since learning I have Bell's Palsy, I've discovered lots of information on the internet, but most of it says exactly the same thing. I decided that I will blog the entire experience of Bell's Palsy from Day 1 through the end of it, whenever that may be. I can only hope that this blog will help someone else deal with this experience.