What happened to your face?

Yep, it's true...someone asked me that very question!  Only imagine the inquiry in broken english by a middle aged chinese (?) woman.   Yep, that's also true.  Now, granted, I've been acquainted with this lady for many years now.  I believe she asked this out of sincere concern and not to poke fun.  I have to admit, I'm rather proud of how I handled this situation in retrospect.  I explained my battle with Bell's palsy and went on to share the more pleasant additions to my life, i.e. pictures of Queen B (or, sweet baby Baylor as she is better known).

Would you believe me if I told you I had actually forgotten my affliction for a time prior to this unexpected query?  I did.  It's easy to forget when those closest to you repeatedly inform you that you look perfectly fine.  You become accustomed to the assymetrical reflection in the mirror and develop a certain level of acceptance.  Let's face it (ahem, no pun intended)...there's not much choice in the matter.  You either stop living and wallow in self-pity or you get up, dust your self off and face the world with your chin up.

We've all posed the questions, "Does this outfit make me look fat?", "What do you think of my new hair cut?", "Isn't this electric blue eyeshadow just to die for?"  Heck, we've been asked those questions a time or two as well.  Did we really think those skin tight acid washed jeans were flattering?  You know, the pants that had to be zipped by use of the curved end of a metal coat hanger while laying flat on the bed?  I was six or seven when I was donning such 'garb'age...the acid washed jeans that is, just not so tight.  I think I was sporting a "spike" back then, too.  Correction, I know I was rocking that hairstyle.  My grandmother, unsolicited personal stylist, provided me this hair cut on a whim unbeknownst to my mother.  Nanny thought it would be cute for my brother and I to have similar hair cuts.  In case you aren't aware, it's basically a modified mullet with the top portion of the 'do being styled with just enough hair gel to leave your hair resembling the spines of a porcupine.  Not all mullets are business in the front and party in the back.  The spike was a full out, all around party kind of 10-90.  Thank goodness I was too young to care.  My mother, however, was heartbroken for me at the time.  Maybe even a little mortified herself.   I'm willing to bet she'll cringe if you ask her about it today.

Oh, yeah, back to the point I was attempting to make.  Those closest to us and who love us the most are also the most likely to 'fib' to us when we ask such questions for fear of hurting us.  When you have a permanent affliction even strangers will do the same.  The only exception are those who have yet to develop and/or refine their tact due to youth, psychological issues or language barriers.  They don't know how else to verbalize it other than the was it truly is.

It's refreshing.

For a while there I thought I was losing my mind.  Was I seeing things others weren't?  Was I obsessing?  I certainly didn't feel, and still don't feel, as if I was standing in front of a mirror for lengthy periods of time analyzing every wrinkle, spasm or assymetry in my face.  I do, however, know a few others who spend hours picking apart their reflection for lesser troubles.  I won't out you though; that would be tactless.

There is a certain amount of agitation that stems from the unwillingness of others to acknowledge the true state of something.  Similarly, there is a healthy amount of appreciation for those who possess the instinct to protect others who are teetering on the edge of defeat.  There is no way I could have handled such brutal honesty six months ago.  I would have been absolutely devastated.

So, thank you to the candid chinese lady and to all those who were more diplomatic in your communications with me.  Honesty and sympathy are both admirable traits.

-Belle

Onset of Massive Headaches

As many of you guys already know I've been suffering from Bell's for quite a while now.  I've experienced the facial pain, the pain behind the ear and eye pain sporatically throughout my recovery.  I've noticed a new symptom as of late and that is massive headaches.  Note the adjective massive.  I've had headaches before, but I've never been one to get migraines or debilitating headaches.  The headaches I've been experiencing the past few weeks have been awfully painful.  Ironically, they only affect the right side of my face as if a line were literally drawn down the center.  Pretty sure this is Hell's Bell's rearing her ugly little head.

Luckily, I know the attributing factors:

1. Someone turned on the fan and left it on while I was taking a rare nap.  I normally sleep with the affected side of my face towards the pillow.  The pressure and warmth seem to sooth any discomfort I experience.  This time, however, I was being overly brave and left the affected side of my face exposed.  I paid the price via massive headache.  Thank you someone.  I forgive you.  
2. I was subjected to the bitter, cold wind outside.  I was a genius.  I forgot my hat.  Again, I paid the price.  Arkansas weather is too unpredictable to forget proper Bell's "protection".  Yes, it gets cold down here and, yes, I wear shoes.

So, I'm willing to offer free advice derived from the lessons I paid for dearly: 

1. Place tape over your fan switches as a reminder to others that turning it on is a huge no-no!  
2. Don't take chances...stick with what you know.  Healing is everything and we can't afford set backs.  Be the person with the beanie cap on a 100 degree day.   What's the big deal?  We wear our sunglasses inside; why not add another fashion faux paux to the list.   

That is all for now.  I wish you all a complete and speedy recovery.  Chin up, keep warm!

-Belle

Pimple Schmimple....

Am I really concerned about this painful pimple smack dab between my eyes?!?  I feel as if I should be able to see into the future with this mondo third eye of mine.  Perhaps this new found claryvoyance will unveil how much longer I'll have to deal with "Hell's" Bell's.  Yes, two apostrophes.

Bell's palsy brings new meaning to insecurities.  Why was I ever concerned about a pimple?  If you think everyone is staring at your pimple - imagine what it's like when you have Bell's palsy.  One of three things happens:

1) People won't make eye contact with you.  In fact, they don't want to look at you at all.  They don't know what to look at.  They know they will be "busted" looking.  They don't want to make you uncomfortable.  You're already uncomfortable.  They're already uncomfortable and wondering if it's contagious.  You're wondering if you should explain it's not contagious.  Or terminal.  You don't want to talk.  The usual obligatory visual non-verbal communication has become null and void casting manners in general aside.  Conversations end abruptly leaving you questioning whether there was ever a conversation at all.  Confusing, indeed.

2) People make eye contact.  Unrelenting eye contact.  They stare.  They move their face so closely towards yours that they quite possibly could be sucking the breath from your lungs as they inhale.  They state, "You look Greeeaaat!", not once, but twice.  Efforts mainly to convince themselves. Surely they realize you know you haven't moved a nanometer.  You'd notice a nanometer of movement. You would have seen it in the mirror when you were obsessively staring at your reflection for three hours straight.  Oh, how time flies when you want to see movement.  If I can see your nose hair through the gel lubrication in my "bad eye"you are standing too close.

3) There really is no third thing that happens.  There wasn't for me any how.  It's either one or the other in the early moments of Bell's. Or so it seemed.

Again, pimple schmimple, I say...you don't know "aesthetic" discomfort until you know Bell's.

Bell's Palsy - Month 9

I'm officially nine months into my Bell's recovery.  I've never been so commited to something in my life.  I mean this whole Bell's thing has outlasted many of my relationships.  Ha, horrible joke...I know.  An inability to make light of this situation would make things much worse.  Trust me.   I find myself poking fun of my condition at times; although not nearly as much as I once did.  No, not in a self deprecating kind of way.  It seems to put others at ease.    

I have learned many important lessons along the way.  One of the most significant being appreciating the little things.  Our area was recently without electricity for several days.  We were one of the few that retained our power.  A blessing in itself as I could not imagine being without having a 7 month old baby.  Finally, my luck is moving in a better direction.  Whew!  Anyhow...many of those affected by the outage were making mention of the fact that you don't really appreciate the small things such as electricity, hot water, the ability to cook a warm meal and readily accessible entertainment until it has been taken away.

I can certainly appreciate their noting of this; however, I challenge them to further consider the smaller things.  You know the things you really don't think about, the subconcious things, such as blinking your eyes, squinting, salivation, lacrimation and breathing.  Yep...

Not that I didn't care for everyone dealing with the issue, but my heart truly went out to the elderly, those with small children and those with absolutely no means to seek warmer shelter.  I'm glad that power is now on for everyone.

I know...I've gone off on a completely random topic.  Is it really so random?  We are talking about power afterall.  We may not always have control of external powers like I mentioned above, but we do have the power to try to see the bright side in even the darkest of situations.  I didn't always exercise this power while dealing with Bell's...in fact, I still have times that I don't.  When I do though it seems my recovery is much greater.  Perhaps it's a figment of my imagination.  It sure does make me feel better about things.  Conclusion:  power is pretty darn awesome.

Bell's Palsy - Month 8

So, I've finally mustered the courage to post my YouTube videos! There's something refreshing about plastering "bedhead" videos on the Internet for the world to see.

The good news is my physical and emotional condition have significantly improved. There's nothing like regaining more and more movement each day! As a wise man once told me, "you really have to feel bad to appreciate feeling good"; and "it takes feeling good, after feeling bad, to know how bad you really felt".

I felt really bad, for a really long time. Seven months to be exact! I can finally look at myself in the mirror without cringing!

-Belle

Bell's Palsy - Day 66

(Originally written 05.31.12)

So, today makes 9 weeks and 3 days with stinkin' Bell's!  Unfortunately, still no movement.  The good news is baby Baylor has made her arrival and she makes me so very happy.  She's so perfect.  I thank God that she is a happy and healthy baby!  At this point, I'm trying not to get discouraged.  There was that part of me that was hoping I'd wake up the day after giving birth and have full movement of my face again.  That obviously didn't happen.  I'm waiting for the day that I see some change.  I pray that I see change.  Movement. 

I'm hanging in there.  By a thread...but still hanging.

-Belle Story 

Bell's Palsy - Day 44

(Originally written 05.09.12)

The verdict is in.  This "straining" like sound I've been hearing upon attempting any type of facial movement and the feeling of "fullness" in my ear are, in fact, not a sign of recovery at all. 

B - U - M - M - E - R!

  

Actually, massive BUMMER!!

Come to find out the muscles on the other side of my ear (the internal side) are likely paralyzed as well.  Rendering them useless for draining fluid from the middle ear.  Therefore, the feeling of fullness or feeling as if I have water in my ear is because I do have fluid in my middle ear.  Ack!  Frustration ensues.

The options are scarce.  Pretty much wait and see - OR - wait and see.  I guess that's really only one option.  Why only one?  Pregnancy.  There isn't much they will do until after the baby is born.  One month after the baby is born to be exact.  So, if I do not get any signs of improvement in terms of this fluid buildup in my ear by then the only suggested course of care is the placement of a tube in my ear.  

Yep, a tube in my ear.

During this same visit my doctor finally took the time (on his own accord) to grade my paralysis on the House-Brackmann scale.  It broke my heart each time I heard him say, "yep, no movement", "none", "nothing".  The biggest blow was when I heard him confirm what I already knew.  "You're a VI".  He also finally acknowledged the poor prognosis although it was as if he were walking on egg shells.  I cannot blame him considering I likely looked as if I could burst into tears at any moment.  He acknowledged the poor prognosis for pregnant individuals with Bell's and those with complete paralysis.  Could someone pick my heart off the floor and help me glue it back together?  Sometimes hearing what you already know isn't at all what you wanted even though you thought you did!  Does that make sense?

Here I sit wondering, "What's next?"  A fear comes over me for thinking that as these days it's almost like an open invitation for more to go wrong.  I called my mother last night and unleashed an emotional breakdown of epic proportions.  Bless her heart!  I really don't know what I'd do without her.  Sometimes you just have to vent;  especially after 6 weeks of trying to remain sickeningly positive and having absolutely NO signs of improvement.  My patience for those who say "Oh, you are looking better and better each time I see you" is becoming less and less.  That bothers me because I've never been such a "Negative Nelly".  It's just all the more discouraging when you hear that then you run home to take pictures/videos to compare with the onset photos and NOTHING has changed.  Perhaps it is as my new friend, Heather, explained.  Maybe, just maybe they are noticing me and not the "woe is me" attitude.  Then I think to myself do I really come across as that positive, still? Everything at this point is a blur.

I wonder at times if deliverying the baby earlier would aid in recovery.  Not that I would want to put her at risk at all, but I understandat 37 weeks they are considered to be fully developed.  Then, I read...that the brain at 37 weeks is only 80% of the size it would be at 40 weeks and I automatically feel like selfish, cruddy parent for even humoring the idea.

I also find myself becoming overly paranoid about many other things as well.  Particularly the well-being of my child.  Thinking okay, that may be the case with the brain, but what if pre-eclampsia sets in.  What about all these cases of still-born angel babies who mysteriously travel to the Lord instead of your arms.  What about my Nutcracker syndrome causing a clot in the placenta and blocking blood flow and oxygen to my precious baby girl.  What if?!?  Why aren't my doctors concerned?  Probably, because it is...paranoia.  A feeling that is so hard to shake when it feels as if everything that could go wrong does.  Darn Murphy's Law.  

My ankles don't fully shrink to their normal size during the night anymore.  Even with elevation.  By 9:30a I have ankles that put a 500lb person's to shame.  At the end of the day my toes look like vienna sausages just pulled from the can.  My fingers feel tight and swollen.  I don't wear rings now so the only way I can gauge is by the way my knuckles look and how they feel.  Particularly when I try to curl them up into a fist.  

I've felt blah lately.  Unwell, but hard to pinpoint.  Faint nausea and feeling as if my head is in the clouds all day.  Concentration is harder than it's ever been.  Every now and then I see these "golden gnats" as I like to call them.  Sporatic at best.  I get these odd pains in my abdomen - not like craps, which is what I'd suspect contractions to be like.  That's not what I meant.  I meant "cramps" - but, I'm leaving "craps" there for the sake of a good laugh! Who am I to say - this is my first pregnancy and again, I'm paranoid.

Again, I bring these concerns to my doctors attention and they don't seem to be concerned at all.  They seem to base everything on blood pressure.  Which it is important to note that if they actually read my record and my pre-pregnancy blood pressure notations they would know that it and my pulse have always been so low that it almost calls for meds to drive it up.  Makes me a great markswoman and them not very observant.

Another thing that bothers me is the fact that my OB does not seem remotely concerned about my Nutcracker Syndrome and the vascular issues it causes.  I KNOW she knows nothing about it seeing as how the condition is so incredibly rare.  Should I not be considered high risk due to this alone?  Not according to her...because well...I guess she just doesn't care enough to pick up a text book and read about it.  I say that in all respect.  I'm venting here and I feel that my concerns are just being written off as just another overly concerned pregnant woman.  

To be frank, I'm tired of feeling like crap, getting nothing but bad news and being disregarded.  it's frustrating!  

I'm ready to be well again.  I'm ready to have a fully functioning face.  Enjoy this pregnancy and my baby.  Enjoy life in general again.

Ugh.

-Belle Story