Monday, July 28, 2008

Day 17: I actually forgot I had Bell's palsy!

And it's not that my memory is going... I woke up and did not immediately think about the more stoic side of my face. It was at least 15 minutes before I remembered. That was a fantastic feeling!!

Daily Changes
My eyebrow definitely goes up a bit and my forehead wrinkles nearly evenly all the way across. It's really twisted that I am liking my forehead wrinkles right now. My eye crinkles up at the corner when I smile and I can whistle in either direction much to the pleasure of the African Gray that lives with me.

I really think I owe this fast recovery to my raw food diet. I have seen big changes in my entire body. My skin in incredibly soft. I never thought I had rough skin but about 4 days into raw I had baby soft skin on every part of my body. I have also dropped 19.4 pounds since July 7th. I started watching my weight a week before the bells palsy struck but didn't go completely raw until my face was became paralyzed. It is certainly easier to eat less without a good sense of taste but I am eating extremely delicious food in any quantity I want and losing 5 pounds a week. I guess when you a chubby pumpkin and there is lots to lose this is how it goes in the beginning.

Yesterday I did not have the flash of fever or extreme tiredness that I had been experiencing every day for a few hours. Today was the same. I think that bizarre phase is over. My face is also less tender when I touch it. I am a little disappointed about that. I equated the healing with the tenderness and figured I would have it until the muscles had all their movement back. But I guess that is not how it goes. I have a little more movement each day so I am still healing and improving.

Saturday, July 26, 2008

Day 15: A one direction whistle!

And that direction would be "in". I can whistle when I suck in!! It's the little things in life. I am really surprised at how quickly I am getting better. I think I just look quirky to the average person on the street and not full on disabled like I did a week ago.

Daily Changes

Things I could do today:
  • get some slight wrinkles in my forehead
  • make a better pucker
  • whistle when sucking air in
  • close my eye if I try (but it's still open when blinking - definitely the most noticeable flaw)
  • drink hot coffee without dribbling or even having to "hook" the cup into the corner of my mouth
I had another surge of 'break out into a big sweat for an hour' fever at 11:00am today. But for the last few days I have not woken up in a puddle of sweat. I'll take the daytime fever over the nighttime any day. The fever is followed by extreme tiredness and then that passes after a few hours. I also make a point today to eat as much as I could to make sure this fatigue was not caused by lack of food. I am confident it isn't.

Daily Mood:

Flinging, flanging fantastic! I went to the Farmer's Market and the Isla Vista Coop today to stock up on food and it was a wonderful outing. The sun was warm, I didn't need my baseball cap. At some point I have become able to look straight ahead with the light sensitivity I had for a while. Not sure when exactly that changed but it's been a couple days at least.

My face is tender to the touch in many places as if it is bruised (though it looks fine). But it is not a terrible pain and it is easy to forget about it completely until I touch my face.

My tongue is still slightly numb feeling and my sense of taste is very weak but those things don't bother me. I'm vain!! The non-blinking eye is the worst thing. My mouth has relaxed so my smile almost looks like a smile - kind of a cocky, half smile but that's okay.

Time for sleep. I really am making a point to get as much as possible.

Friday, July 25, 2008

Day 14: Another good day

The flashes of fever keep happening though I only had one today around 12:30pm. It is followed by extreme tiredness and limb fatigue. I've never felt anything like it before but luckily I can rest any time I like.

When I touch parts of my face it feels bruised and tender. Hello little nerves and muscles! I am so happy to feel you. My eye closes fairly well and I think I won't have to tape it shut tonight for the first time - I'll just use my little sleep mask. Peeling that "gentle paper" tape off each morning is brutal. :::shudder:::

Tomorrow I want to venture out to the Saturday Farmer's Market and stock up on herbs and veggies. I have been craving my version of crackers inspired by Juliano's toast recipe with Rawvolution's mock tuna salad. So yummy... and I should be munching it by Sunday if I get those crackers going early tomorrow. Planning to make more raw dolmas too (my grape leaves are already marinating). I must have eaten 30 last week and I still want more. But now, it's time to sleep.

Thursday, July 24, 2008

Day 13: It's my lucky day!

Daily Changes
I'm spacey, dingy, having slight balance issues, arms are dead tired and feeling like 50 pound weights, and I'm taking the stairs at less than half speed. I guess it wasn't the medicine making me feel like this. Darn. I also had another flash of fever today around 2pm that lasted over an hour. I just let it go and figure my body is trying to fire itself up and kick this thing. I don't have a thermometer but I can tell the fever isn't in the danger zone.

But on to the good changes! There are 3 little dime size parts of my face that have movement! This is unheard of in a case like mine in such a short period of time from what I have read so I am tickled pink. Just above the thickest part of my eyebrow will slightly contract when I try to move the brow. Below my bottom eyelid and slightly out towards the edge the skin will flutter when I try to smile. And the corner of my mouth is cooperating again and making a little movement up. It also opens up more and I don't have to "hook" a drink glass in the corner as severely as I did just 2 days ago in order not to dribble everywhere.

My hearing went in and out/loud and soft a lot today and I eventually had to just lay down and take a 3 hour nap in the afternoon when sitting upright was just too much effort.

Daily Mood
Fantastic of course. I wish I wasn't so tired and listless but there's not much I can do about it.

I added a new supplement today. A chewable Methylcobalamin B12. I am replacing my old B12 with this new one since it is more potent and has better absorption... supposedly. I'm doing the 1000mcg dose and not the 5000. Gotta keep myself in check and not go off the deep end with all these pills.

I am feeling very fortunate right now. I am glad I did the prescriptions right away and I am going to keep taking the supplements until I am completely healed or someone makes me stop. But I really think that a key component of getting better is my raw food diet. I have not put one thing in my body that is not living, organic, and full of available, necessary nutrients. Every sip and bite has a purpose. There are so many stories of raw food healing cancer and other diseases that doctors are not able to cure. Unfortunately, I do not know a story first hand but I still think it is possible. I've ordered the documentary "Simply Raw: Reversing Diabetes in 30 Days" as some fun viewing for next week.

Wednesday, July 23, 2008

Day 12: The scavenger hunt

This hunt for B12 injections is making me nuts. I managed to get one shot today and the promise of one a week in the future. So I am committing to that for the next month. As part of the checkup I had to have an EKG. Interesting though fairly useless as far as the Bells Palsy goes. Though I did learn that I have a low heart rate which the doc tells me is not a bad thing. I also got a long skinny printout of my EKG to share with friends.

The doc recommended that I go buy B12 skin patches and after a 3 hour hunt of every pharmacy, drug store, and health store from Goleta to Montecito I had to give up. The last health store I went to said they could not be distributed to health food stores. Had to order them from VeganGoods.com in Ohio. I paid for the "good" shipping and I hope they show up fast - I plan to slap one right on my neck while standing at the mailbox if I haven't found a daily injection source.

I do have a lead on a local clinic that may talk to me about the B12. That is my project for tomorrow. If it doesn't pan out I will stick with the elusive patches and a once a week injection.

Daily Changes:

My mood today is pretty good. Though I did wake up and was not able to twitch the corner of my mouth like the last 3 days. A little disappointing since I had plans to race up to my brother's house and have him video tape the tiny movement for me. Oh well, it's always nice to just see him anyway.

I do think that I can definitely see more of one of my front teeth than before. And my jaw is slightly tender underneath towards the ear when I press it. I hope that is a good sign.


Time to sit with the birds before bed.

Tuesday, July 22, 2008

Day 11: In a holding pattern

This is my new look. If I could really go out and order coffee like this I wouldn't feel so self conscious and it would make the poor people that have to talk to me feel better too. But it's hard to be a mophead... just a different kind of freakishness.


Daily Changes

The Bells Palsy doesn't seem to be getting any worse. My vision is still blurry a bit but the slack side eye is actually seeing better than the other eye so I think it's just lack of muscle pull keeping it out of whack. (The eyes used to be the same)


Still twitching the corner of my mouth in the morning. It is fleeting but it has become my morning ritual to keep my spirits up.


I have read that hearing in the Bells side can become heightened and I think I experienced this for the first time last night. I could hear a pipe squeaking within a pipe like it was being twisted back and forth. Not sure if that was the antenna on the roof which I can hear when there is wind (no wind last night) or what. I also heard a freakish amount of birds in the middle of the night. I don't usually hear birds at night and this was like a flock right outside my window.


I am not sure if I mentioned before that it is hard to look straight out for any length of time without the eye burning a little and wanting to look down. Focus goes and eye needs a drop so driving is harder but not impossible. This has been going on since last Friday or Saturday I think. I can't go out without my glasses and a baseball cap - they help tremendously.


Daily Mood

A little annoyed but still optimistic. I tried to find a doctor to give me daily B12 shots today - or a least a consultation to talk about the possibility and I struck out. Santa Barbara seems to be locked up by the Sansum Clinic system. A proud non-profit that still costs an arm and a leg for continuing treatment if you are uninsured. If I had insurance they would be able to help me... ouch, thanks. Otherwise, it's $115 a day to walk in and shot costs - if the doctor would agree.

I am extremely disappointed that they do not have the ability to make a package deal for this. It seems that a nurse could do it easily and they could get a quick $50 or so a day for a few weeks. But it's not about making that money and it's not about helping a patient. It just doesn't fit into their computer system. I am disappointed. B12 has legitimate proven studies if taken by injection. I am beating my head against the wall trying to find a provider. Tomorrow I go to plan B which I feel is doomed to fail but I will still try.


I did post on craigslist for the first time looking for advice. None yet but maybe someone local will read this and know a nutritionist or nurse practitioner that would want to help me and make some money.


The one good thing I did see on craigslist was a wanted post looking for a Burning Man ticket. My big trip to burning man in 32 days is not looking like something I should be doing right now. My heart is breaking... I bought my ticket the first day they went on sale and have been planning ever since. It would have been my first Burning Man. Can't think about it too much because it really does make me a little sad. I am meeting the woman tomorrow to trade a fat pile of cash for my ticket. I do feel very fortuitous to get all my money back without any effort at all - just a fluke to have noticed the post. It's a win-win... I hope the woman and my ticket have an awesome time next month.
The fantastic woman at my post office who scans in my package form each day and is always ready with a friendly smile talked to me today and I actually forgot about my face for a while. She told me that Amy Goodman? from Democracy Now just recovered from Bells Palsy. I have got to google this woman and see if I can learn anything new. She also told me that there is a doctor that offers free relaxation/meditation classes in town. Dr Winner? I'm looking him up too.

Monday, July 21, 2008

Day 10: My pirate smile

I took photos last evening. I really wish I had done it sooner but I had a mental block and just couldn't face it.


This first picture is how my eyes close with Bells Palsy. I am still taping and putting a lubricating eye gel on the open one at night.
The second picture is a very soft smile. If I do a regular smile it really comes out looking grotesque and nothing like a smile. Even this modified smile is not something I would be comfortable giving to someone.
Daily Changes
Still sleeping long and waking up drenched in sweat. It's yucky but I am hoping it is my body revving up and burning this disease out. Can still move the corner of my mouth just a smidge early in the morning. I am going to try to record this one of these mornings so I can compare changes. I realized that I need less eye drops during the day now. Maybe my eye has stepped up and started to produce more tears or maybe the super goopy stuff I use at night carries over into the day. To tired to really try to figure it out.
Daily Mood
Super tired. Yesterday and today are the worst for complete exhaustion. And for some reason my business BOOMED over the weekend. I have 97 order to pick, pack and ship. 97 is not sustainable alone on a daily basis, week after week, but it is possible to complete in one day if you are quick and efficient... two skills I am lacking right now. I plod along and get to the post office by 4:40pm. What a long day. Mood is tired and arms are lead weights.
The day in general
Blah. I really wanted to try to find a doctor to give me B12 injections but there was no time. B12 injections seem to be the only proven treatment (well, aside from really expensive hyperbolic oxygen therapy) that has shown actual healing in medical studies. I'd like to do everything I can to help my odds for a full recovery. Tomorrow I hunt down the shots... I hope.
I weighed in at Weight Watchers today. I was happy to run into the leader outside the office as I went in so I could explain my face. It only started to lost control last Monday so this is my first weigh in as a full-fledged Bells Palsy victim.
I feel like I may have lost a lot of weight since it is so hard to eat and food still have very little taste to me. So I leave my jacket on thinking that will help. Down 8.2 pounds in one week! Holy crap. I am really going to have to try to eat more because they gave me a little lecture! It was small but still, hello!, didn't I just tell you... face problem!!! Sheesh. Next week I wear tennis shoes, keep the keys and phone in pocket and what ever else I can think of.

Sunday, July 20, 2008

Day 9: I don't think I like my medicine!

Daily Mood:
Oh so tired! Last night I went to bed at 7:40pm and didn't wake up until 8:45am. Well, I did wake up a couple times drenched in sweat but went right back to sleep. Ugh. I have not gone to bed so early in decades! This really does wear you out. And I have been tired all day. Even washing a few dishes makes my arms feel like I have been holding them out to my sides for 10 minutes.

Daily Changes:
Sweaty hot flashes at night. I am not sure if this is the medicine or my body trying to whip up a fever to fight this virus. I am also so light headed a lot of the time. Real periods of spaciness which is frustrating and makes accomplishing anything very slow. The last prescription I had was a few years ago for an antibiotic and before that it would have been the same but probably 20 years ago. I'm not one to take medications or prescriptions and I've never taken an anti-viral or steroid before. I am afraid to even take advil for the fever, if that is what it is. My jaw still feels slightly numb inside. More so on the right/slack side.

My mouth will still curl up a teeny tiny smidge at the corner if I stare in a mirror and try really hard. 3-4 times this morning before my tongue and jaw couldn't stay still and tried to help in the action. I like looking at the tiny movement. It gives me hope. When I look at my face in little pieces it's really not so bad. Looking at the entire thing trying to talk is depressing beyond words. It becomes very ugly no matter how hard I try to make normal movements.

Freaks at the door and it's not me!
I live down a long dirt driveway with no sign of a house in sight from the street. It's a little canyon surrounded by big houses on hills. I love that no one comes to the door unless I am expecting them. But today, "knock knock knock", and I shuffle over looking particularly haggy in my extremely listless tired mood and whip open the door. I'm expecting my Dad to come over and finish the amazing aviary he is building me. But I need a peephole! There is some kind of wiry tattooed cutoff T-shirt yahoo at my door asking me how to get to Santa Ynez. It makes no sense... why not drive down a road that actually looks like it leads to a house if you want directions. When I start to talk he backed up and by the time I got two sentences out he was half way up my porch stairs (yes, up to get off of my porch, I'm in a canyon). It bothered me because I am feeling very venerable and weak in my current condition. But after thinking about it hours later I may have scared him more than he scared me. I could be straight out of the movie Deliverance - sadly that is no exaggeration.

The day in general
I did manage to clean the bird cages today. It's a twice a week job that I had put off and it really had to be done. That was the only accomplishment of note. Mostly laid around and marveled at the weakness I could feel in every limb.

Saturday, July 19, 2008

Day 8: Less annoyed today...

Daily Changes:
I think I look the same as yesterday except that my upper eyelid has drooped down on to where my eyelashes meet my lid. I do believe that this is just gravity, my archenemy, taking it's toll. I am still disturbed by this droop. I wish I had taken pics a few days ago when I was almost symmetrical. I can ever so slightly twitch the corner of my mouth up about 3 or 4 times if I start at it close in a mirror and concentrate. This only works in the morning before my face is pulled to the working side by talking. I don't believe this is a new development, I think I just discovered I still have this little ability. It's encouraging because I believe it means that the nerve to the corner of my mouth was not ruptured in the big ol' canal of nerve swell up that is going on inside my head.

My top teeth feel numb also. But not when I touch my gums... they just feel numb inside.

Daily Mood:
A little crappy but resigned. I decided that I am not going to die. I always knew that but I still felt desperate and paniced like life could be over until today. If I have a partial recovery I can just be that freaky lady to trick-or-treat from if you are brave enough. (Shhh... she has bodies in the basement) And if it fixes itself I'll be just another one of the multitude of people that have had this sneaky little thing.

Supplements:
I have added to my mountain of pills! I am now taking a Lecitin supplement once a day. I've added it to the evening because the mouthfuls of morning pills are getting to be a bit much. But I am getting my daily water consumption in because of this. It's the little things...

AM:

  • Multivitamin
  • E 400mg
  • C 1000mg
  • Garlic
  • Ginger Root
  • ALA
  • Ginkgo Biloba
  • Zinc
  • Lysine
  • Super B Complex

PM:

  • C 1000mg in Emergency-C packet
  • Garlic
  • Ginger Root
  • ALA
  • Ginkgo Biloba
  • Zinc
  • Lysine
  • Lecithin

The day in general
I am feeling a whole new desire to be more in touch with my body and my health so today I some cholesterol tests done. After 12 hours of fasting overnight I hoofed it in and got the following results:

Total Cholesterol 241
HDL Level ("Good") 51
TC/HDL Ratio 4.7
LDL Level ("Bad") 156
Triglyceride Level 170
Glucose Level 97
HbA1c Level 6.2

So, not fantastic but definitely fixable. The doctor told me that the total lipid tests I had measure the cholesterol stored in my blood cell walls for the last 2 months and give a snapshot of the past. I am going back in 2 months to see what kind of changes take place with my healthier eating raw food diligence. I really expect to see good results. This was such a piece of cake I can't believe I never had this done before.

Friday, July 18, 2008

Day 7: Why do I have Bells Palsy... WHY?!?!

Today I want to think about what has triggered this disease in me and document all the supplements I am taking daily. I have some brilliant friends that have offered up some ideas I did not think of.

Possible causes or triggers...

Stress

Stress seems to be the main factor cited on the internet. I have stress! There is always a foundation of stress in my life which is just me. Multi page "to do" lists, always behind in some area and trying to catch up, never more than 6 hours of sleep and often a lot less. I am staring at a sympathy card I should have sent months ago and now it's too late and I am a flake. Staring at a birthday card for a friend with cancer... could still send that one late, still a flake. Owe tons of birthday and Christmas presents to two young cousins across the country. No clear remembrance of the birthday dates now and really feeling like crap about that. And the parents were always fantastic about remembering my daughter when she was a kid. I don't know how I got to this point but procrastination is evil and pure stress inducing. I have to work on this. I'm also saving money to put enormous down payments on a house and condo on the east coast next spring. No self imposed pressure there... I'm totally realistic... snort. The extra stress layers I added recently were-

June:

  • Fly to Boston to pick up a huge bird I thought I was afraid of. (fine now but very stressy in June)
  • Daughter goes to Istanbul for a month and takes some side trips to Albania and Macedonia. (She is fantastic about sending emails but Albania... seriously?!?)
  • eBay imposes some really ill thought out changes that could seriously effect my ability to continue making the bulk of my income on their site. (scary)
  • Taking care of my mom's dog that had eye surgery. 9 hours a day, 5 days a week, starting at 5:30am. He's a nice dog but being responsible that he is taken out, doesn't bark or jump ever, drinks enough when I hold the water bowl inside his big head cone, and is generally happy is worrisome. The real stress of it becomes getting up at 5am every day. I can't get to bed earlier and quickly become a bit rundown and sleep deprived.

July:

  • July 1, the Gap fire breaks out a couple miles away and on July 3 I have to evacuate my home in a panic. I had about an hour to pack all the inventory, computers, and work stuff I could fit in my car. Oh, and the 2 birds and 1 cat. I drive off with no idea of where I am going to stay. I was able to move back after 2 nights but it still sucked and left me with a lot of extra work and worry. Slept about 4 hours each night.
  • Dog returns Monday morning to continue his convalescence at my place. (That ended on the 9th... Woo hoo! I helped out a bit and now he is better.
  • My dad builds me a fabulous aviary and I learn it's too big (dangerous for clipped birds falling like potatoes), needs to have a cushioned floor, needs to be painted with a certain paint for metal poisoning reasons, woven shade top I bought needs a coat of "Thompson water sealant", and I would really like a partion changed in the cage now that I think about it. So a nice favor is becoming a major ordeal and while my dad is terrific about the extra work I feel terrible to put him through it - especially now that I am supposed to rest.

Toxins

Toxins from the fire... This thought came from one of my brilliant friends and I think she may be on to something here! I breathed in a LOT of smoke when I was loading the car. Amazing looking orange smoke. It took 2 showers and hair scrubbings to get the campfire smell out of my fingernails! Most unexpected.

Two days ago at the dock of my local post office a mail carrier asked me if I had Bells Palsy. I said yes and he told me that he has "several friends" that have this. What the heck?!? Who knows several people with this disease? One has had it a year and is improving. The others got better within months. I really wish I had more details. There was the Zaca fire over the hill from Santa Barbara that started July 4th, 2007 and lasted until November 2007. The dirt and ash from that fire blew all over the place and I was literally dusting and sweeping for months afterwards because of it. Could this be a fire/toxin link for the friends of the mail carrier I talked to?...

The Chinese believe that Bells Palsy is caused by wind. Which I think could directly tie in to the fire/toxins/toxins in the earth thing.

Variables of note before my tongue went numb...

I also have two variables that were different in my routine the week before this all started. I tried raw milk in my coffee for the first time. It tasted the same but the thought of it kept freaking me out and after using almost the entire half gallon before the July 17 expiration date I ended up throwing it out and returning to pasturized. The last few days I would microwave the milk for 1 minute 45 seconds to heat it before putting it in the coffee.

I also had a yummy yeast, garlic, popcorn snack with extra yeast because the cheesy flavor was so great. This is a recipe I learned from my old friend Luke and I had it two nights in a row just before my tongue went numb. Not sure if I mentioned it earlier but I also thought my tongue looked coated on Saturday and Sunday before tooth brushing so I even googled 'yeast poisioning' and similar terms to see if that accounted for my numb tongue at that point.

I really don't have any idea if raw milk or large yeast flakes from a health food store could have triggered anything but I'm laying it out so I remember these details later on just in case.

I also have two small skin tags on my neck on the right. Since these may also be caused by a virus and happen in clusters I am looking at them with distain. They are coming off as fast as possible now.

Treatment

I have been to the doctor within a few days of the onset. I believe it recommended to get to a doc within a week for prescriptions - so good for me on that one. At first I didn't want to go at all. I am taking Acyclovir 5 times a day for a week and Dexamethasone 3 times a day for a week. Antiviral and steroid.

Hourly Alcon Systane lubricant eye drops, and taping the eye shut at night and using a sleep mask after applying Thera Tears Liquid Gel to my dry ball... um.. I mean eye ball.

After reading more on the internet I have added some innocent looking supplements to my daily regime.

AM:

  • Multivitamin
  • E 400mg
  • C 1000mg
  • Garlic
  • Ginger Root
  • ALA
  • Ginkgo Biloba
  • Zinc
  • Lysine
  • Super B Complex

PM:

  • C 1000mg in Emergeny-C packet
  • Garlic
  • Ginger Root
  • ALA
  • Ginkgo Biloba
  • Zinc
  • Lysine

I am also adding organic green tea to my diet (thanks Jo) and I am considering MSM and Lecithin based on something I read last night. But I will have to do more research today on this. I really just want to be sure I try everything I can so that if I am one of the people that suffer with this for longer than the average time at least I will know I did what I could.

Ayurvedic and Chinese medicine is on the research list. And acupuncture is also on my list of things to look into starting early next week.

Daily mood

Not bad today! I have not cried once and this is a first. (for the record I am not a big cryer so spending a few mornings crying was really a drag) My daughter sent me a GORGEOUS arrangement of flowers yesterday and I know they are contributing to my improved mood. They are half stunning flowers whose names I do not know and half exotic wildflowers I have not seen before. She can really pick 'em! I love you Devon!! I can smell them too every once in a while. They must smell beautiful all the time if the scent is getting past my lack of smell and taste.

Daily Changes

The only things different I can notice this morning is that my lips and nose are pulling a little more towards the left. My eye and eyelid seem a little droopier than yesterday but the changes are pretty mild looking. My top teeth also feel a bit numb, mainly on the right side. I hope this disease has reached it's worst point. Fingers crossed.

The first thing I noticed this morning in the bathroom mirror is how amazing my skin looked, like I was glowing. It's the raw food diet I am on again. I had forgotten what a difference this makes. My skin and arms also feel a lot softer and it's only been less than a week. Nice!

I am still seeing blurry with both eyes but just enough that driving for more than 15 minutes would get annoying. I also have to look down a lot. Looking straight forward or upwards with the right eye results in a burning feeling in the eye - even immediately after putting eye drops on. Not sure what is up with that but maybe that cuts my drive time a lot shorter. Lucky my mom is my chauffeur this week.

Thursday, July 17, 2008

Day 6, Cry in the morning and get PO'd in the afternoon. At least I have a schedule.

Vision is still crappy. But the eye on the slack side is seeing better than it used to. Since I was 5 years old my eyes have always had the same prescription. It's very handy with contact lenses and knowing if I trust that a new eye doc has gotten my prescription right every two years.

I covered the left eye (on the wrinkled side of my face) and leaned towards the computer until I could see the words perfectly with my slack-sided eye that seemed "off". Then I switched eyes and I had to move closer to see the words clearly with what I thought should be my "good eye". Surprise! The other thing that is odd to me is that I can't alter my vision at all on the right eye by pushing and pulling my skin around the eye. Normally that changes something but not with this condition. I suppose when the muscles get working again they will pull or push my eye back to it's worse level of vision.

I am very worried about my eye since I have read how easily vision can be damaged if the cornea is allowed to dry out. After my mom and I visited the post office today (and all my other little runs) we stopped at the drug store for some nighttime eye gel to really help keep it moisturized. And I use the drops during the day religiously along with using my finger to blink.

Oh... thinking of blinking has reminded me of more shower horror. The first thing I do when I take my towel to dry off is to put it up to my face with two hands and wipe my forehead, eyes, face, etc. OWWWW! When the eye doesn't close all the way this is the most painful thing ever. Little loops of abrasive, absorbent towel right smack in the eyeball. Twice. The constant frustration over little things like this is really hard to take.

Wednesday, July 16, 2008

Days 1 through 5 with Bells Palsy... fun!

Sarcastic... bitter... a little bit. The last few days have been a roller coaster of emotions. I have only officially known I have Bells Palsy for two days. I'll start at the beginning.

Day 1: Saturday, July 12, 2008
My mother and I have a fun drive down to Ventura on a shopping spree and decide to have lunch at the local Mongolian BBQ. I can't control myself and I put huge scoops of spicy sauce and garlic into my pile of veggies and let the chef cook it up! When lunch was over my tongue was feeling a bit numb and I blamed it on the sauce and tried not to think about it.

Day 2:
Still with the numb tongue feeling and I think my tongue looks slightly coated on top. Odd, but I brush my teeth and tongue and try not to think about it. I've got Birdie Bagel Brunch to go to with my pets! I feel like I am slurping a my juice a bit at brunch and the fruit place that looks fantastic has very little flavor but who cares, I'm there for the birds.

Day 3:
Problem... tongue is still numb and I am annoyed at it. I really can't taste much after the first bite of anything but I do get a metallic taste every once in a while. By the afternoon I decide the right side of my face is not normal, a bit numb feeling though I have sensation when I touch my face. The eye isn't blinking well and my smile is lopsided. I also have no line from my nose to my mouth on the right side. Did I have a stroke?... I don't think so. But oh crap, what if this numbness thing continues and I lost the ability to swallow or breathe and choke/suffocate to death alone in a few hours?!? That was my scariest thought yet. I do a little more internet research and it does seem like Bells Palsy... or a small stroke, or the start of MS, or a tumor, great. But I can't worry about this now because I have to go weigh in at Weight Watchers and have dinner out with my mom. She is concerned but by the end of dinner she thinks I look a little better. Drinking is only possible in public now with a straw so I really don't think I am better but I try to be optimistic.

At home that evening I see that I have definitely gotten worse and I do some serious internet research. After finding two online diaries from 2000, and 2001 where the Bells has started with a numb tongue I am extremely confident and also quite upset that this is what I have. I look for youtube videos to try to find others with the condition... do they look like me? Holy crap, what mistake. It seems like only the 15-20% that don't get better in a year make the videos. Very, very depressing. Tread gingerly on youtube if you are out of kleenex or get hysterical easily.

Day 4: Official diagnosis!...eventually...
After all my internet research and a right eye that doesn't want to stay closed now I headed off to Longs Drugs to stock up on kleenex, serious dry eye drops - 2 bottles, paper medical tape to tape my eye shut at night, non stick gauze, and a deluxe adjustable sleep mask in case I can't get the eye taped well... $109.00. I'm cheap if it's not an iphone so this is really annoying me now.

By late afternoon I am suitably stressed enough to decide to go for medical attention. My mom drives... she is great. I was sent away from family doctor's office "You need to go to the emergency room!" To which I silently reply 'Bite me, I'm an uninsured googler and I can't pay for the MRI's, CT scans, etc. while the docs saunter around and decide I must have Bells Palsy'. But the only thing I can make myself say outloud is "Thanks" and it sounded a bit snide. I'm deformed now so I can get away with that tone.

The emergency clinic was much more friendly. Two forms and $115 bucks up front and I have a comfortable chair in the lounge, waiting to be called back to an exam room. Finally, I'm in! Blood pressure, pulse, squeeze my fingers, when did it start, the doctor will be in soon... It took this doctor less than a minute to talk to me and diagnosis Bells Palsy. I liked him immediately. He expects me to recover fully for some reason though the youtube videos are still burned in my mind and I am frightened. He also tells me I am an 8 on a scale of 1-10, 10 being the worst case. He says I have a "dense case of Bells Palsy." Not sure why he is still so optimistic about recovery but I cling to it like a 2 year old and a binky. The doctor took pity on my insurance status and prescribed generics for me. An anti-viral called Acyclovir to treat herpes simplex (UGH... do I really have that?!?) and Dexamethasone which he tells me a generic Prednisone and will work just as well. Having read up on the treatment I know that people recover equally well, or don't, with and without the prescriptions. But I did feel better having them. The doc tells me I need a neurologist appointment too but the clinic will call me tomorrow and set that up for later. Okey dokie! My mom and I go to dinner again which is just a fruit smoothie for me as I hide in the booth and wait for her to do the ordering at the counter. Later at home I realize if I try really hard I can make the right corner of my mouth move a tiny bit. That's got to be good!

Day 5: Not my favorite day...
I wake up and nothing is moving. Non-stick paper tape is a joke. It sticks... it sticks hard! I lost two eyelashes getting it off. If I do that every morning I am going to look like a freak! Oh, wait...

I scrutinize my 42 year old face... no wrinkles or tiny lines on the right side. It's amazing and I'm mesmerized. I try to give the tiny smile again but I've gotten worse. I can't move anything now on the right. Time for some morning kleenex. I make coffee (need the caffeine fix or I get a headache) but I have to wait and drink it luke warm. More dribble and wiping than flavor and this breaks my heart. I love my hot coffee in the morning. I did read in the two online diaries that this condition can get worse for several days so while I am disappointed at least I knew this was a possibility.

Mom comes to get me and we go to the beach with iced teas to relax and chat. I think we are trying to pretend everything is okay. I am actually tired and walking is harder than it should be. I find that odd.

Back home I slump in a big chair and watch TV and rest. But I am interrupted with an eye ache, a head ache, and a definitely feeling that my right eye is closing and changing shape. Sure enough, the outer edge of the eye wants to close and the side near my nose wants to stay open. It hurts and it's getting worse as I watch. So scary but crying is out of the question because it creates an ice pick in the eye style pain.

I shower and damn near die. Being a good Southern California resident I have a water-saving shower head that kind of spits out water but mostly makes a big mist. Shampoo gets in my eye and it burns! What am I seven? I haven't felt this kind of pain in ages. As I try to sooth my eyeball and get the shampoo out I decide I need Johnson's Baby Shampoo no more tears formula. Then I go for the conditioner. Bloody hell! That stings too. Now I decide I need a new shower head, the mist is a horror movie.

I am a yo-yo raw foodist and I decide to get back on the raw food wagon. Those devotees talk about raw food fixing everything and part of my plan now is to put it to the ultimate test. I make my killer raw chili, adding seasonings to taste, and then I realize I can't taste. I take a sample up to my parents house (we live very close) to see what my mom thinks and just have some company. My daughter's visiting African Grey bird is hissing at me and I need some friendly interaction with someone less judgmental of my freakish face.

Up at the house my eye does the "I want to close and cause you pain" routine again from earlier in the day. My mom see this and volunteers to pick me up every afternoon and take me to the post office so I can drop off my internet orders. Luckily I work at home and don't have to brave an office full of people talking to me and staring at me. Too much people interaction would definitely make this worse for me.

I tell my shower story to my mom and we are off in the car to Bed Bath and Beyond for a big drippy shower head! Nice!

Later in the evening two pieces of eye tape with tape covering the sticky that would touch the eyelashes. I'm getting this part down.