Day 20 - Sporting Events with Bell's Palsy

Yesterday my husband and I went to the second-to-last Astros game of the year. We've had tickets to this game since long before the BP set in.

Sporting events with BP require a little bit of planning. Do I want to wear one contact in my good eye, or glasses? I went with glasses for better eyesight, even though they are hurting me right now. Don't forget your earplug(s)!! The earplug really made the game tolerable for me.

Also, don't go off your pain meds the day before the game. Just don't. This will make the game waaaaay less fun, unfortunately.

Day 19 - Unpirated Sleep

Well, last night I decided to chuck it and sleep without the patch.

I goo-ed up my eye really good and fell asleep with my hand over it, and you know what, it worked!

I know that I'm not supposed to do that. I know the eye doc would probably yell at me. I get it.

But I don't care. I really don't. I woke up with the eye feeling better than it has in weeks. I woke up not needing goof-off for my face. I woke up and opened my eyes. I will no longer be sleeping as a pirate, no siree.

And saying that, my friends, feels *awesome*.

Day 18 - MRI Review

Well, the MRI yesterday actually went really well.

It is a sort of surreal experience. First they take you to a changing/waiting room where you put on a hospital gown and de-jewel yourself... I felt rather stripped of my identity. And of course, I didn't have my watch on, very surreal, losing time.

I got called into the room rather quickly. The lady showed me the machine, had me take off my glasses and lay down. She gave me earplugs (thank goodness!! I didn't realize how loud the machine would be, but the hypersensitive ear could never have stood it.) and suggested that I close my eyes. I told her I couldn't, so she got me a cloth to put over my eyes and I tried to keep the right shut as best as possible. She tucked my arms and legs in with a sheet, put a panic button in my left hand, and in I went.

It is a strange sensation, being moved around when you can't see or hear and when there isn't really anything to feel. You are totally desensitized. Then she came over the speaker and told me about the next sequence. She always came on and told me how long the next sequence would take. Then the sound started. You know, for a really sophisticated piece of machinery, an MRI makes some really weird noises! At first, I paniced a bit, but tried to focus on long deep breaths and the sounds themselves - finding a rhythm in them. Soon I was so relaxed I think I may have fallen asleep. A few times I got a false sensation, like I was falling sideways, which of course I wasn't!

Halfway though they pulled me out to give me a shot. They emphasized that I was to be really still. They only pulled my right arm out. I could hear them talking, but I didn't really care about what was going on. The injection hurt and my right eye flew open. I wasn't supposed to move so I couldn't reach up and close it, so the last half of the MRI was less pleasant with my eye open and staring at a white towel.

Sooner rather than later, the whole thing was over. They pulled me out and told me I was free to go. Of course, I have no idea what they saw in my head.

Day 17 - Where's the Spoon?

I had a Baaaaaad Eye Night last night. And as I've learned, a bad eye night makes a bad day the next day all around.

The darn thing is bloodshot and painful. Painful to open. Painful to hold closed. Feels like a freaking stick has been lodged under my upper eyelid. Joy.

And the good eye can hardly stay open for trying to close the bad eye.

And I'm also just feeling really subdued today. Not sure why. Just kind of tired. Sleepy. Totally lackluster and energy-free.

Maybe I can sleep in the MRI this afternoon...

Day 16 - Twisty Face

Strange thing to meet someone for the first time while you have Bell's Palsy.

I had the strongest desire to blurt out, "Dude, just so you know, my face isn't always this twisty!"

I guess I'm still more vain about it than I thought...

Day 16 - Motivation and Weekly Pics

First I want to talk about motivation, religion, and Bell's Palsy.

I'm not a religious person, but I was raised in a religious family, and I live in a religious part of the country, so I've heard a lot of motivational/comforting/advising comments along these lines:

"Just put it in God's hands and trust Him to take care of you."

"We've got you on our church's prayer list, and the power of prayer will see you well soon."

While these phrases and others I've heard have been couched in terms that don't speak to me, I think that they are representative of some important lessons that can be learned about living with Bell's Palsy, and perhaps most other illnesses.

The messages that I heard were to stop stressing out about the things I can't change, and that there are people out there who love me and care about me who are hoping for my speedy recovery.

And aren't those really the most important things anyways?

Here are this week's pictures. I actually feel like I see more improvement in the mirror than I do in the pictures, but perhaps each tiny improvement feels like such a gift that I expect it to appear larger than it actually is.... if so, that is ok to. I'm excited about how far I've come and how fast, and I'm no longer scared about how far I have to go.

Smiling. Notice the corner on the Palsy side can point up now!

Angry face. Check out how I can move my eyebrow down!

And finally, something I just discovered last night: if I make the angry face, and then try to close my eye, it closes!! This morning I took my first goggle-less shower since September 11! (I still can't blink, but progress is progress!)

The bruised facial bones feeling is almost completely gone today, and I think I'm getting some feeling back in my face because I feel strangely aware of the dead feeling zone on my upper lip and nose and eye-corner area on the palsy side today. Again, this is progress.

Day 15 - Nothin' Special

Nothing really new or exciting to report.

I feel like I'm constantly high on pred-no-doze in the beginning of this pack. I think my face might be swelling. I can't *wait* to get off it - 3 more days!!

I haven't had to take a muscle relaxer today yet (go me!!).

My facial bones aren't feeling quite as bruised.

I think I *might* possibly be getting a *teeny* bit of movement back in my eyebrow. Maybe.

Reminder to self: I want to blog about religion and prayer and Bell's Palsy. Soon. Maybe tomorrow if nothing exciting happens then. Oh, yeah, and also reminder to self to take pictures tonight, as it is Tuesday!

Had another Good Eye Night last night. Fingers crossed for another tonight.

Day 14 - New Goo

Ok, I'm back to work.

No pain yet today, so I'm holding off on the muscle relaxers. Got them here if I need them, though.

I had kind of a tossy-turny night, then remembered that I just started a new pack of Pred-No-Doze, so that explains that. Feeling a little twitchy today, also explained by that. But I had a Good Eye Night, so high hopes for today!

Yesterday I re-tried the nighttime eye lubricant that I originally thought I was allergic to. With more experience I came to realize that it wasn't an allergic reation, just a very Bad Eye Night. I tried it during the day to be certain, and had no problems, so I used it again last night, and will try using it throughout the day today. It definitely seems to keep the eye moister, but I have to deal with somewhat blurry vision from the ointment on the affected side. Totally worth it if it'll keep me at work, so we'll see!

I think I might be getting a little brow movement back. It isn't as pronounced as the mouth corner in that I can't feel the one specific muscle working, but I can move the brow just slightly up and also just slightly down even when I'm trying to isolate the opposite brow. I'll take it as improvement for now.

Day 13 - Blah

Today the goal has been to stay awake in preparation for going to work tomorrow.

I was partially successful.

I had a Bad Night with the eye last night, so I was tired....
I tried taking only half a muscle relaxer so I wasn't as tired.
But as a result I had some pain, which makes me want to sleep...

You see where I'm going with this.

Bah, I don't have much to say in a positive way today, so that's it for now.

Day 12 - Some Relief

Ok, after a little runaround from the doctor's office, I finally got a call. The doctor thinks maybe I'm having muscle spasms, so she prescribed an NSAID and a muscle relaxant which I finally got from the pharmacy.

Wow, what a relief!! After taking the muscle relaxer, I got in bed and slept for 13 hours with *no* pain!!! This morning I woke up and didn't need any additional medication. It is almost dinner and I am still pain free! I can't even begin to describe what a relief this is.

I'm dragging a little today, but honestly, I'll take dragging over pain any time any day. Seriously.

Day 11 - Call the Doctor!

When I woke up this morning my eye was totally bloodshot and ticked off, so I took off the patch, gave it some drops, and proceeded to go back to sleep with just my hand holding the eye shut. When I woke up 3 hours later, it showed significant improvement. (Even though it is still really bugging me.) I am still having pain behind my ear and radiating down my neck.

So I called the neurologist's nurse. And now I'm a little freaked out. She asked me if there was a knot behind my right ear. Yes, there is. She said maybe it was my lymph node bothering me and that that is typical of infections which cause BP. Yes, but I've finished my anti-virals and am no longer supposed to *be* infected!!! I told her that the pain was running down my neck. She asked about my meds. I am still taking prenozone (which I'm going to re-name pred-no-doze, sheesh!), but finished my anti-virals on Tuesday. She's going to go talk to the doctor and call me back (it's been 2 hours and I'm still waiting, but whatever).

But this whole conversation kind of freaked me out. After I got off the phone I felt the lymph nodes on my neck and they are still enlarged on the right side... could there be something else wrong with me??

I need to go run errands today, but I'm so freaked out I feel paralyzed in this house.

Day 10 - Can I Rip My Eye Out?

Last night I never got comfortable. The pain behind my BP ear just led to tossing and turning and my eye felt dry and scratchy in its socket behind its patch.

This morning when I woke up my eye already felt not great - not the best sign. Then my commute took about twice the normal time (from 30 minutes normally to a full hour), which I think further irritated the eye (can't use drops in the car, can't always manually blink, light irritation, etc). At work I was in a meeting where I needed to watch a 2 hour powerpoint presentation, and the eye just poured tears. I kept trying drops, rubbing it, holding it closed, anything I could think of to get it to stop, but it just wouldn't. It felt kind of grainy - as if I had about 50 large dust particles under my upper lid - and nothing I could do was going to change that. I knew then that I was in for a rough day.

My goal quickly shifted to getting out of work asap and making up the time with a little work from home and some sick hours if necessary.

Unfortunately, when I got home I couldn't make a new eye patch with the tape because my skin was still irritated from the patch from the night before. So I just tried to relax with my hand over my eye. Tonight I'll have to go back with the old rolled gauze/underwear/pirate patch method to let my skin rest.

For most of this week I've felt really positive, but now I'm really starting to get down again. I have to call the neurologist's nurse tomorrow about getting FMLA paperwork filled out, so I think I'll ask if there are any additional ideas about pain management.

Day 9 - After the Smile Twitch

Well, when I woke up this morning I still had the Mona Lisa smile control - so I don't think it is going to go away. I want to emphasize that I only have control over one muscle, and it is a tiny little motion (so small that other people can't even always see it) that I can make, but I can't even describe the elation of being able to actually move a muscle in my face whenever I want to!!

Unfortunately, I had a pretty bad day. The pain behind my ear is radiating down my neck and into my shoulder, and the Tylenol doesn't seem to be cutting it any more. I had to leave work early because of the pain and because my eye is still just driving me crazy.

Another weird thing that I've noticed is that my sinuses feel almost bruised. This started the day of the twitch. Not just my sinuses below my eyes, but also my jawline and browline - basically most of my bone structure feels bruised. Preston thinks that maybe my nerve is regaining some feeling since those are a major part of the route it travels.

Here are a few pics for reference - these were taken exactly one week after the initial palsy pictures.

Bell's Phenomenon.Me trying to close my eye really tight.
Elvis snarl.

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.