Well wow...I have not made an entry for quite some time. Since 2010!!! Well a lot has happened since I last blogged. My life has completely changed!!! I ended up moving to the USA for work and I now have a 3rd child just recently in February (twas a hard pregnancy). Something happened on February 1st this year that made me want to start blogging again.....Bell's Palsy. I just thought I would share with you my experiences and if you are reading this you probably got hit with Bell's Palsy and like me cannot stop googling about it to make sense of it all.
January 31, 2013 while turning 35 weeks (pregnant) to the date I went out for a dinner to say goodbye to my boss who was leaving our unit. I was quite hesitant to leave my home because for the past week or so I was feeling extremely tired. Now having never made it that far into my pregnancy, I thought that maybe the extreme fatigue was normal. Other symptoms I also experienced were excruciating headaches (probably the worst I've ever had), and kept hearing a small weird squeaking sound but did not associate it to tinnitus because it sounded like it was next to me and not in my head (like there's a mouse in my room but I couldn't find the darn thing). So for half a day I was looking for something in my room, putting my ear against the wall and pillows and all (silly me) to only find out later that the sound followed me everywhere I went and that it was me! I am a nurse, so to make it worse I am self diagnosing myself, possibly pre-eclamsia? I went to my OB but my blood pressure was normal, 16 points higher than my usual blood pressure but normal at this stage in my pregnancy. During the night after the dinner, I had a lot of trouble sleeping and my right arm was feeling numb and tingly. I woke up the next day just laying in bed checking my emails and then I received a phone call from a friend of mine. I felt it was unusual that I couldn't quite lick my lips properly. So as soon as I got off the phone I ran to the bathroom and did the biggest smile I could in the mirror. Sure enough half of my face was flaccid and drooped. I had trouble brushing my teeth as well as everything was falling out of my mouth. Working in the ICU I'm thinking damn I'm having a stroke! Even did whatever I could from the NIH stroke scale on myself (whatever I remembered and thinking time is brain!). My friend took me to the ER and I was immediately diagnosed with Bell's Palsy. Really? Bell's Palsy? Yeah I've heard of it but never did I think this would happen to me. The ER doc couldn't explain why my arm was tingling though (but after talking to my chiro, it really could be associated with everything else that was going on with the nerves and muscles). The arm tingling subsided in a day, and I also remembered my equilibrium being off during the dinner the previous night, I kept falling over but again thought it was related to my pregnancy as my center of gravity is off. This is also something that occurs with Bell's Palsy.
I went home from the ER that morning (Feb 1, 2013) feeling a bit sad that my face looked the way it did. My husband and I joked about it here and there and I would have moments of sadness but really having some humor in all this helped me a lot. Here is a picture of myself the night before the Bell's Palsy:
Some of my friends that saw me with the palsy try to cheer me up by saying oh it's not that bad or you still look beautiful. But there's just something about not being able to express my true smile that made it all the more sad. I felt better too hearing from people that had it say theirs went away after a couple weeks. Well...here I am almost 4 months later and I'm still plagued with it. So the reality sometimes feels as though this is my new face for good.
So that night of the day I discovered I had Bell's Palsy, my husband and I were staying up late watching tv, when we noticed my 2 yr old daughter's lights turned on. We both went to check on her and she needed a diaper change (potty training has been difficult), and my husband went ahead and changed her diaper and asked if I could hold her feet. Well he was on the floor and scooted forward and accidentally rolled his knee onto my foot. I yelled in pain, hopped back, lost my balance, tripped on my daughter's chair and landed on the edge of another chair against my spine. Oh man did that hurt and I also had a good cry lol. By 4am (now Saturday), my back was hurting really bad and my braxton hick's contractions were intense and somewhat painful (this actually has been normal for me since 18 weeks to have crazy braxtons and somewhat painful). By 7am I couldn't handle it anymore so I went to the hospital, they were able to stop my labour with Terbutaline and sent me home with strict pelvic rest. Anyhow long story short, I sat up for dinner to eat but then felt the labour coming back and I ended up having my baby at 35 weeks on Superbowl Sunday. I had a c-section, horrible experience in the OR, felt like I couldn't breathe and stiff up to my neck (which I believe Bell's Palsy had something to do with it). I literally felt like I was suffocating or drowning.
Right when I got diagnosed with Bell's Palsy, I got prescribed a round of prednisone and valacyclovir for 10 days. I've read articles on the treatment and apparently it helps the prognosis. I felt no relief but I'm thinking hey it could be worse and what if it was worse because I didn't receive the treatment. A few days passed by and my right eye was completely drying out, I was unable to blink it however it would randomly blink halfway here and there when I'm not so focused on it. My tongue felt numb and it has had this strange sweet and bitter taste ever since. The right side of my face was also hurting, even a kiss from my husband would make me want to jump. It was a different kind of pain, it felt like a deep-into-my-bone kind of pain. And the sound in my ear progressed to a swishing sound almost resembling the washer machine. It was either the swishing sound or a loud squeaking sound that coincided with my heartbeat. Going outside was another thing too, my eyes couldn't deal with the light, they've become so sensitive to the light that it actually hurts. Oh and loud noises, would just make me cringe or jump or yell out in shock. The hearing hypersensitivity has been one of the most annoying things to deal with. I have small children at home and their yelling would make me want to run and hide. Eating has proven to be difficult, I can only chew on one side and I would bite the right side of my lips from time to time, food falling out of my mouth or all over my face and so forth. Just not a pretty sight. I drink out of a straw and hold my lips shut so that I can suck up whatever I was drinking, or I would hold my bottom lip up while drinking from a cup and tilt my head to the left side so it makes it easier to swallow. I have choked on my food a few times, but I've learned to just chew more carefully and eat slowly. So dealing with this while recovering from a c-section was quite challenging.
A couple weeks pass by and I'm trying to be positive thinking ok well others have recovered in a couple weeks so my time is coming soon too. Well weeks turned into more weeks and nothing. I felt very discouraged. I didn't want any photos taken of me and I didn't have many photos of me and my little newborn because I felt my face was so disfigured beyond recognition (I know a little dramatic right? lol). I didn't know how to make it look better, do I put on makeup? Or no makeup? It didn't really matter because I didn't like my face the way it looks right now anyway. And so thanks to some apps on my iphone I was able to do this lol:
Going out was a little tough. I can feel people staring at my face and trying to figure out what was wrong with it, so of course I felt the need to explain why I look so strange. But I hated it, I didn't want to have to explain and I just wanted to smile at everyone like I used to. The response I get is that they thought I had dental work done lol. I don't think I'm a 10 or anything but I did love my smile, my eyes would wrinkle up when I smiled ear to ear. I had a big smile. So I've sadly learned to just cover my mouth when I'm going to crack up hysterically, and of course only one eye closes as well while the other one is wide open. I've read up on other people's experiences and it seems that most of time the eye on the affected side gets smaller. Mine however is the opposite, my right eye (the affected side) is wide open like I had botox done. So the funny thing is my eye makeup smudges on one side while the affected side looks fresh as always. Oh and I forgot to mention that my speech gets slurred as the day progresses, my face gets tired and I have to put one finger to my face to hold up the end of my mouth when I talk so that I my speech can be more clear. I only send out this pic to my really close friends. But I'm thinking you probably want to know what my face looked like with the paralysis so here is a photo below. Not a photo that I would want anyone to remember me by but if it helps others that are going through the same thing then I think it deserves to be posted.
This photo was taken February 6, 2013 (day 6 of Bell's Palsy), 3 days after I had my baby
Bell's Palsy really is just plain annoying, it's not something that you can hide and not tell people about. It's right there on my face! Yup just written all over my face. I have a day or two about every two weeks where I sit there and feel sorry for myself after my family has gone to bed. I would sit there and look at old photos and wish so badly that I can smile again. So yes I have days where I pity myself and I think it's ok, we can't be strong all the time. And I'll cry about it to myself and wake up the next day all recharged to fight this thing off (with my mind of course). I even have dreams about myself waking up and going to the mirror and seeing my happy face again, only to wake up and actually go to the mirror and see that photo above. Sigh, oh well, what can I do right? The days go on and I have to live my life still. I try to have a good sense of humor about it. I would FaceTime my sister and friends and show them my face, I would laugh and cover the side that moves and they would get so creeped out and laugh with me at how the right side does nothing at all while I'm laughing, my lips don't even move.
For the first month or so I was quite busy with my newborn (his name is Liam) and just trying to feel better from my c-section. I had a hard time recovering, possibly due to the fact that I was dealing with Bell's Palsy at the same time. I was always dizzy and falling over, my balance was off still and I actually had another fall. First week of March during the night, I went to get some formula for my baby and fell flat onto the floor, I guess I blacked out. Nothing was in my way so I didn't hit my head or any other body part on anything thank goodness! I wasn't hurt so I was very thankful, my knees were sore but that's just nothing compared to what I was already going through. My husband has been very supportive in all this and that has been tremendously helpful. He cooked and cleaned and took care of the kids and the baby. It made it a bit easier to go through this, and let me tell you it wasn't easy.
So in March I decided to start acupuncture. The doctor decided to address it aggressively, after the third week of doing it I thought I finally felt something, maybe a twinge but was not visible by anyone, it was only something I felt. We headed back to Canada for my son's baptism and I continued my acupuncture there, well it only made things worse. My nose, mouth, and chin severely shifted to the left side while at rest, making it very noticeable that something was definitely wrong with me even when I wasn't smiling. It must've been a mix of everything and the cold. I decided to stop with the acupuncture because for one thing it was draining my bank account, and another was I felt it didn't do anything for me. I wish it did but it didn't. I was starting to feel like Quasimodo. Maybe he had Bell's Palsy too lol.
One thing that I noticed with Bell's palsy was how sleepy I was all the time! I'm always tired and I honestly felt like I can sleep anywhere anytime. So that combined with taking care of a new baby and our other children made me even more tired. I also found it very hard to focus, but then again that could be mommy brain. My right eye has gotten blurry so I try not to drive. I also actually injured my eye. I decided to sleep with an eye mask, well my cornea was stuck to the mask and I just about died in the morning when I pulled off the mask. It was about 2 days of eye pain!!!.
So time went on some more and I felt no improvement. I would run to the mirror every morning to see if I can note any changes, still nothing. I would sit up at night and read up some more on Bell's Palsy whenever I get the chance. I stumbled upon something about going to the chiropractor so I gave that a shot. My chiropractor's office does a half hour massage before I get adjusted so it really helped relax me and relieve some stress. I don't know if that had anything to do with it but April 20 I woke up and was able to smirk a little, and I couldn't believe what a big difference a small smirk can do!!!! I took a pic to document this joyous day. A small smirk but as long as I keep my smile small you can't really notice the asymmetry, also learning how to sweep my hair across the affected eye helps.
April 20, 2013 (Week 11 of Bell's Palsy)
I also refrain from smiling with teeth, I'm not able to do that yet without looking quite ridiculous. I don't have a picture but I will take one eventually to show you what I look like while smiling with teeth. So at least I can now somewhat look normal. There was definitely a feeling of hope that day when I posted that pic for my friends to see. Well soon after I was able to smirk, I developed crocodile tears syndrome. I was thinking nooooooo! So what that is is a crosswire in nerve regeneration on the wrong glands. So while I am eating, instead of salivating, my lacrimal glands are stimulated and my right eye cries while I eat or my nose runs on the right side. It is funny at first but is very frustrating, especially when I am eating in public. I am always hoping that my eye is running and not my nose, I rather people think I am crying than get grossed out that my nose is running. And the weird thing is that when I'm actually crying I only cry out of my left eye. So strange!
I went to friend's wedding on May 9, 2013. I was extremely glad that I could look like I am actually smiling. A little less stiff than the photo above. Here it is:
Week 14
Now it is May 13, and about a couple days ago I felt the muscles around my eye go crazy when I smile or eat. Sigh, one word comes to my mind....Synkinesis. My right eye still has that popped open look and doesn't quite shut completely yet and when I smile it feels as if there are some pushing forces trying to shut my eye, however I can only feel this and not see it. Also when I close my eyes, the right nasal labial fold pulls so it looks as though I'm smirking to the right side. I really hope this is just part of the healing process and not going to get worse. Although I have read that it only gets worse with time. Perhaps someone can share with me their experience, I would greatly appreciate it. I need to read up on it some more. What I really need to do is some physiotherapy as well. Will get on it.
I will post more on my progress as soon as there are any. It really helped me to go online and read other's blogs about their Bell's Palsy experiences, so I felt compelled to do the same. One thing that I learned from all this is to appreciate the small things in life that are free. Smile often if you are able to, never take it for granted. You never know how precious a smile is until it is gone. The frustration of trying to express my happiness through a smile made me miss my old smile even more. I want to smile like the me I know. I want to laugh my ugly laugh with all my teeth showing because that's just me and that was my laugh....it belonged to me. All I know is that I am thankful for my husband and children, they make me feel beautiful. And I guess that's what matters most. Thanks for reading. I will update soon!
Smiling the best I can on Mother's day yesterday :)
July 2, 2013
This is week 21 of Bell's Palsy in my life. The only changes since my mother's day photo post above is that I've really got a lot of synkinesis going on and the tinnitis isn't constant anymore. Oh also the right side of my face feels more swollen and painful. End of May I went for a CT of my sinuses and MRI of my brain, both were negative. Since my last post I have kept up with my positive attitude about this condition I am stuck with, but this morning I am feeling quite bothered by it. I guess the constant pain along the right side of my forehead, eyes, sinuses, cheeks, gums, jaw, head, and ear is just getting to me and I am wondering if I will ever feel normal again. And yes, today is one of those not so great days and I am allowed to feel irritated, it just happens to be now while I am typing about my progress at 6am. I apologize as this does not happen very often. My doctor has planned to send me to a neurologist when I get back from my family vacay. I am beginning to think this is Ramsey Hunt syndrome II, which is associated with all this pain I am having and the continued vertigo, but I am really hoping it isn't because recovery rate for that is much lower.
The synkinesis is very annoying. When I smile, yawn, and chew my food, the right eye closes. I am hoping this goes away. Pretty much when I try to do anything with my mouth the right eye closes. My cheek feels so tight, and the muscles in my forehead and brow feels like they are always pushing down as well. I've been doing tons of massaging on my face which helps it feel better but it doesn't do anything else.
5 Months of this is a long time for me. It is just a glimpse of how much longer this recovery process is going to take. I was assuming by now I would feel much better but somehow it feels worse. It isn't something people can notice I am feeling because they think I look fine. But really, I don't feel fine. It hurts. Also, I've gotten over the idea that I will ever smile like I used to. R.I.P. smile I miss you. For those of you who think it's just superficial, well yes it partly is. Many women spend tons of money on cosmetics and facial regimens for what? Because we do care what we look like. Hence this can be very psychologically damaging. I am glad I have a great support system, but it does get hard some days. Remember how I said have pity parties for myself every couple weeks? It hasn't been that frequent, actually very few.
I am currently on my babybonding time at the moment (since beginning of June). I did go back to work just for May. My colleagues were awesome, we can laugh and joke about my face and I feel just fine, it actually makes me feel better. I don't have to explain to them why I look the way I do, except for some who are new and have never met me. But it's just one thing I don't have to do because I hate having to explain it.
It's really been quite an interesting year for me so far. I know though that God gave me this because he knows I can handle it. And here I am handling it. Hopefully my next entry will be a happier one and I will be in a better mood. Thanks for reading.
September 20, 2013
I went to see my neurologist a week ago and was told that unfortunately my face will never completely recover. It is sad that I fall into that small 10-15% stat of those who won't completely recover. I have synkinesis. So even with a small smile my right eye tries to close. Not to mention the asymmetry of my smile.
I am thankful for my dr being very honest with me. He also thinks that other cranial nerves were affected. I have facial pain, my head hurts, I get spasms here and there in my head and my right ear, neck is stiff, and my right arm gets tingly sometimes. He said by now I shouldn't be having any pain. He will re-evaluate me in six months. I just need to be strong and move on from this. I'm just glad I have a wonderful family and wonderful friends. Oh Bell's palsy you suck :(.
February 12, 2014
It's been a year and Bell's Palsy you are still here! Like an unwelcomed guest overstaying your welcome. It's been quite the year. I learned so much about myself. I'm finally going to update this blog. I have some feedback from people so it is so nice to know someone out there is actually reading this. I'm stll trying to figure out how to do this and I'm not sure how to reply to the comments below, there is no reply button?! But I will figure it out!
Where to start? Well, many people who know me have said that my smile has gotten a lot better. Since my last post though I personally haven't noticed my face actually looking better. Oddly, my face feels worse, but that's just what I am feeling physically. Not sure if it is because I am working too much but I can definitely notice that when I am stressed out or exhausted, my face feels worse. Let me get into more detail on what I mean when I say my face feels worse. I often sit here and think of how I can describe what it feels like so others can understand. And what comes to my mind is a puppet with strings. One movement is controlled by many strings that are all attached to each other. So I can't smile without feeling like something is pulling my forehead, eyebrows, and cheeks all at the same time. I wish I could take scissors and cut these invisible strings. It would bring so much relief to my face. It is very hard for me to not notice that I have Bell's Palsy because of all this pulling that my muscles are doing.
Other things I am experiencing right now include my right eye feeling like it is drying out again. Something tells me this isn't a good thing? Why am I going backwards? I still have vertigo here and there especially when the weather is really cold or I am really tired. During xmas holidays I visited my cousin up in the Bay Area and it was crazy how I kept falling over to one side. Or during an outdoor wedding in Decemeber, I also kept tipping over to my right side. Of course I had to explain to people my vertigo issues or else they would think I'm a drunken bridesmaid lol. Also, sometimes I get excruciating headaches only on the right side, and the inside of my ear would also hurt. My gums on the right side feel swollen as well as with the rest of the right side of my face. I palpate my lymph nodes and it feels like there is a nodule on the right side. This goes to show how swollen I still am. I'm sure the bones in my face have changed as well, they do not feel symmetrical to the other side. When I yawn or laugh with a wide open mouth my jaw bone pops out on the right side. I guess the muscles are too week to even hold it together. Another thing is my right eye is now noticeably smaller thant he left eye. Oh and something interesting and funny, when I cut onions only my unaffected left eye cries while the right eye does not tear one bit! It doesn't even burn.
I am so due to go see my chiropractor again for an adjustment and massage but with my crazy work schedule and being a mom, I don't always get to put myself first. Anyhow, that is my update for tonight! Thanks for reading!
