Wednesday, March 26, 2014

Update - Random Twitching

I haven't posted in a long time, again, because I've been holding a nice status quo.

But in the past few days I've been experiencing a change.  I'm not certain if it is Bells, or consequences thereof, or if it is completely coincidentally all on the right side of my face.  But even if it is totally unrelated, I guess it is evidence of how BP can still have an impact on us mentally even years later, right?

I think it was last... Thursday?  That I noticed a dead spot on my right lower lip, stretching in a line down my chin.  It isn't dead in terms of being able to control the muscles (I immediately ran to a mirror and performed all of my face symmetry tests!) - it is really more about the feeling in the skin.  It isn't anything bad but I notice it especially when I'm eating because it changes the feel of chewing.

A few days later, I got some violent twitching in my upper lip, again on the right.  That lasted about 2 days, then faded.  Then yesterday and again this morning I've been having some strong twitching of my right eye near the lower outer corner.

The next question is has anything changed in my life?  No - not really.  Especially not last week when it all started.  I must admit that this week I've been pretty stressed, so that could potentially account for the twitching.

Really, I think if I was just twitching, I wouldn't think much of it.  That happens to me occasionally.  I think I am paying attention this time because of the odd dead spot in my lip, because losing feeling in an area of the face smacks of BP.  And that has never happened before, so I'm not sure what to think of it at all.

It could be nothing.  Hopefully it is nothing.  Hopefully this is one of those things where the mind freaks out on nothing.  (If I say "nothing" more, I'll will it to be NOTHING!)

Tuesday, April 3, 2012

Good article on a public figure with BP: http://news.yahoo.com/baylor-coach-mulkey-diagnosed-bells-palsy-184413045--spt.html.

Interesting to me that she noticed it in her tongue first - I noticed it in my scalp first, but also noticed a metallic taste to my water the night before onset. She's hit it on the head with "I knew this was not right".

Friday, June 3, 2011

Update: Years Later

Wow! I came back to check on this blog and saw comments - I'm so glad I could help! That was what I was looking for when I first got BP, and I'm glad I could be there for others.


I did make a full recovery. I still feel a tiny bit of numbness on the apple of my cheek, but it is only noticable when I think about it. I also think I still look slightly more lopsided than I did before, but I'm certainly not complaining! Here is a pic from last Christmas:

The only other remotely interesting update I have is that I was pregnant last year, and terrified of having a relapse. You know from reading the literature that you are more likely than the general population to get BP again once you've had it, and you also know that pregnant women are more likely to get it, in theory because of the immunosuppressed state your body maintains while pregnant. I did inform my OB immediately that I had had BP in the past when I became pregnant, but there were no precautions we could take - it was just a wait and hope situation. One afternoon I felt like my face felt... funny... a little numb, slightly less responsive, and I went into full panic mode thinking that it was happening again. But it all turned out to be the fears of a hormonally charged mind, as BP never developed and the next morning I returned to feeling completely normal. I had no other scares throughout the remainder of the pregnancy, and I delievered a healthy baby.

I found it interesting that I could have lived through BP before and still be so nervous about getting it again. I mean, it is most definitely something that is livible, though life is so much easier without it! I think it really speaks to the adaptability of the human mind: when we have BP we go through a full mental process in order to cope with it, and as we heal, we return to "normal". If we ever get it again, I imagine the coping process would have to happen all over again, but at least we would know some of the more simple quality-of-life adaptations (like eye-patches!) to make immediately.

What I want to say to anyone reading, and to myself if I ever get BP again is this: it is going to be ok. One way or the other, it is going to be ok. You cannot control if or when you heal, but you can control how you feel about yourself, and you can control the simple adaptations that you need to make in order to make yourself physically as comfortable as possible. Focus on those things that you can control. And reach out to anyone you see with BP, because we know how difficult it is, especially in the beginning!

Wednesday, November 14, 2007

Two Months Down - Progress Report

On 11/11 my mom noted that it was two months to the day since the onset of the palsy. I thought it might be a good occasion for a progress report.

I appear completely normal unless I'm demonstrating or you know what to look for. The residuals are in the apple of my cheek area and mean that I still can't wink with the palsy eye, my nose doesn't wrinkle evenly, I can't snarl evenly, my mouth still doesn't have full tension on the palsy side, and I have some loss of feeling in the apple of my cheek area. My contacts still don't track correctly, and I still remove them and goo up my eye for sleep.

I also still have the sensation of "bruised bones", but only when the cheek is under pressure.

For a while I was getting frustrated at explaining to people how even though I looked normal, I was still dealing with the aftereffects of the palsy. Today a colleague wisely asked about the residuals, and I felt so happy to report on my progress, but to admit that I have a ways to go. That is ok. I'm not being hard on myself, those are simply the facts. But if I never recover another iota, I can live just fine like this - that is how much better I am.

I can make my face twitch like crazy if I massage it, so I think progress is still coming.

My palsy eye seems to tear more easily than my left eye, could these be the crocodile tears Dr. K warned about?

I have a check-up with Dr. K in another month. In the meantime, I'll blog if something interesting happens. I also mean to add the photos that I've been neglecting to add for too long. I'd like to update the sidebar with some good resources for BP sufferers (being a librarian and all).

Oh, and the BP coworker? An incomplete paralysis, and complete recovery within 5 days. Wow!! Ok, so this wasn't me, and may not be you, but remember, they told me 3-6 months for any signs of recovery, and here at 2 months all visable signs of BP are gone. This can be done.

Wednesday, October 24, 2007

What are the odds?

Another case of Bell's turned up the other day at work. There are *maybe* 40 employees in my current location. What are the odds??

Unfortunately now I'm having to answer questions about the contagious aspect of Bell's. All I can say is that BP is by nature idiopathic, i.e. it has no known cause. However, many physicians suspect that it is the result of a complication of a virus. Following this logic, if it is in fact a virus that caused my BP, then that virus is contagious, as are all viruses. However, the complication that resulted from the virus (i.e. Bell's Palsy) is not contagious.

Very little new to report on my progress. I've been having some violent twitching in my right eyebrow - so violent that it feels like someone is grabbing my optical nerve from behind and jerking it back and upwards. Hopefully that is going to mean progress, as my eye is definitely the slow mover in my recovery.

Tuesday, October 16, 2007

Day 35?

Ok, I give in. I'm not posting daily any more. This decision is a reflection primarily of how much better I am doing. I'm seeing improvements over days now, instead of daily, so there isn't always something new and exciting to say regarding the BP. I'm also improved so significantly that I don't think about the BP all the time and it doesn't seem to encroach upon every aspect of my life any more (and hasn't, since I started wearing the contacts again).

I do have a new ability, though! I noticed last Saturday that for a second there when I was brushing my teeth it almost seemed like the water wasn't going to shoot out of my mouth. It did anyways, but the next day it did less, and last night, hardly at all! So there you go, new trick that two-year-olds have mastered but BP takes away from you #1001: swishing water around in your mouth without squirting.

Still on the drawing board: winking with the palsy-side eye, crinkling my nose symmetrically, snarling symmetrically, and re-gaining full feeling in my cheek, and having my right contact track properly (someone suggested maybe my eyelids aren't holding it down the way they normally would??).

Friday, October 12, 2007

Vampire Time

In the spirit of true sarcasm, I just had to put this out there.

I went to get more blood drawn today. The way it works is that a bunch of doctors use this one blood-drawing lab company. So if you are at the doctor and need blood drawn, they just give you some papers which you take to the lab and you get it done. Or, if your doctor decides later that they need more of your blood (as in my case), they fax the papers to the lab, and you just show up.

So I showed up at the lab around 12:45 today. Waited in a looooooong line. Finally got up to the front where *one* person was working, and told him my name and that Dr. K faxed my papers over. He takes out a giant stack of papers, proceeds to have me spell my name 3 more times while he flips through it, and cannot find my paperwork. Lovely.

Then he asks me to call the doctor's office to have them fax the paperwork over again. He doesn't know the extension, but that is ok, I have it memorized. He gives me a funny look and asks how I know the extension and I say, "Oh, I've been on the phone with them a lot in the past week."

So I call and get Grumpy Nurse. I've spoken with Grumpy Nurse before. She isn't my favorite person. I tell her I'm at the lab and they can't find my paperwork, could she please fax it over again? She tells me it has already been faxed. Ummm, hello, that's why I said AGAIN. And really, I don't care whose fault this is, I just want to get it over with. She says fine. I ask if she'll do it now. She says yes. I confirm that she has the correct fax number. She does. It is 1pm by now.

30 minutes later the guy comes over and says they still haven't gotten the fax. I suggest that since he is the employee of this company, that maybe Grumpy Nurse will listen to him if he calls.

While he's on the phone, he calls across the room to have me yell-spell my name at him. Again.

He gets off the phone and doesn't update me.

30 minutes later I get in line to tell him I'm leaving. Obviously they don't need my blood badly enough.

While I'm in line, a lab tech comes out and calls my name. I say, "Oh, great, I didn't even think I was checked in!" He asks for my paperwork. I don't have any. That's what they give you when you get checked in. I never was officially checked in.

I'm getting ready to start crying now.

He tells me to go on into the lab. He finds my paperwork. He draws *5 vials* of my blood.

I leave at 2:15. Lovely.

Thursday, October 11, 2007

In other news...

I'm still hurting this morning. The pain meds helped me sleep, but I was wanting to stay drug-free at work. Now I'm thinking of amending that to half-drug-free at work, because I don't think I'm going to be able to hang in there otherwise, unfortunately.

In other news, though, last night when I brushed my teeth I could *almost* keep the water in my mouth. Almost.

That's progress!

Wednesday, October 10, 2007

The headache that isn't a headache

My pain is back.

I had a headache when I got home last night. My normal headaches go away when I sleep, so I expected to wake up this morning better.

Now I think that it isn't a headache.

I think I'm interpreting it as a headache because there are no other words of description for the pain I'm feeling. It is in my neck (on the right side). It is in my face (on the right side). But most painfully, it is in my right eye. I've even been confused today about where it hurts. It hurts everywhere on the right side from my collarbone up.

And let me tell you, this hurts. Badly. I finally left work early - I just couldn't take it, couldn't focus on anything other than the pain.

I'm back on the pain meds. Oh, glorious 5 days of alertness, such a sad end.

Bah!! I thought this was over when the pain didn't come back last weekend!!

Tuesday, October 9, 2007

Scars

After a bit of bruja-ness, I finally got to talk to the neurologist around 5 today.

She saw some scars in my brain. 2 or 3, very small, frontal and parietal lobes on the left side. She said if I was old, she would think that I had had a few very small strokes. She said because I'm young, she's wondering if I've ever had any head trauma.

I've never had any head trauma. I mean, Jared O. in high school flicked me behind my right ear once and I got a painful bump. I've also had a bump on my forehead that I don't even remember the cause of, but both of these were on the right side of my head. My mom wants me to tell the doctor that I was born naturally, then she said some words that I didn't understand, but that I understood to mean I came out fine and tested fine once I was out. Dad wondered if playing the drums in high school could cause it because of the vibrations (*seriously* - I love my Dad, but my bass drum did *not* scar my brain). I've never been in a car accident (fingers crossed, knock on wood, and all of that). Anyways, no head trauma.

Fine. She wants to run an ekg and some bloodwork to "make sure I'm not susceptible to this kind of thing". My interpretation? To make sure I don't have MS. Hey, you google brain scarring and see what you get!

I think the scarring is probably insignificant/unimportant (don't say "nothing" - there is something there, after all). Of all the things she could have seen in my MRI, other than nothing special, this would be my choice. I appreciate her thoroughness and will submit to additional poking and prodding.

Knowledge is so much better than a fear of the unknown. Now I can relax.

Monday, October 8, 2007

Scared - Update

I called at 8 when the doctor's office opens. I was told that the doctor is on a different campus today. They will check my file and call me back if she left a note.

I'm certain that she didn't leave a note. I'm certain that I'll receive no phone call today.

I'm debating calling the other campus, but hesitating because my file isn't there and she probably won't tell me anything because of that.

But I'm still freaking out. I can't help it.

A few years back, my Dad was going to have surgery to fix his intestines, which always seemed to be messed up (a trait I inherited). He had some routine pre-op bloodwork done and received a phone call from his doctor, who wanted him to visit a hematologist because something was abnormal about his blood. Dad got off the phone, looked at me and said, "Go get the medical dictionary and look up leukemia." Mom tried and tried to convince him to not jump to the worst conclusion, to just wait for the hematologist to see him, etc, but it was no use. Dad was diagnosed with leukemia by the hematologist. (But the kind where you have a relatively long life expectancy and they don't try to treat you - he is doing fine 2 years after diagnosis.)

But you see my point, right?

"Hi, Amber, this is Dr. K calling about the results for your MRI." Combined with "I'll call you if there is anything abnormal." even when that statement is paired with "Don't freak out if I call you." --> I'm freaking out. What if there is something really wrong with me? Not just that my face doesn't work, but really wrong? I know I'm supposed to not jump to the worst conclusion, and that there probably isn't anything wrong with me. She probably just saw... what?? What is good and abnormal in your brain?????

Scared (Day 28)

Ummm, so yeah.

My neurologist said that if my MRI was normal, I'd get a letter. If not, she'd call me. If needed, she'd see me.

When I got in to work this morning, she had called last Friday. That means something isn't normal.

She also said not to freak out if she called.

I'm trying not to freak out.

Really, I am.

But her office isn't open yet, and I want to talk to her NOW!!! I'd rather be dealing with whatever news it is than sitting around anticipating what it might be.

Sunday, October 7, 2007

Contacts are in!!!

I feel fairly confident in saying that my optometrist would not approve (since my right eye still doesn't completely close), but yesterday afternoon I tried putting my contacts in. Both of them.

I have to be careful about having drops, and I am really concentrating on blinking, but so far, so good. It feels *great* to be not wearing glasses. I mean GREAT!!!!!

Saturday, October 6, 2007

Off my meds (again)

Last night I got home so late, I forgot to take my once-daily dose of NSAID.

So this morning I decided we'll do another weekend experiment of going off the meds. No pain yet, not that it has been very long.

Friday, October 5, 2007

Football on BP

I may be looking a little more normal, but I still have to be very careful about the hypersensitivity in my affected ear. It is a little surreal attending a sporting event with one ear plugged, though - harder to hear the people you are with, harder to get into the game. Ah well, at least my husband's parents, who saw me in the first week, also thought I had made great progress.

Thursday, October 4, 2007

Losing track of days

My parentals came in to visit today. They were both surprised at how good my face looks. It shouldn't be this way, but I got the feeling that they thought I may have been exaggerating the severity of my initial symptoms (complete paralysis). So I showed them the videos we took of me on the first day. I wasn't exaggerating. I was completely paralyzed.

Wednesday, October 3, 2007

Day 23 - More Side Effects

I'm still a little tired today, but less than yesterday. I skipped the half muscle relaxer today, because yesterday was too much to handle. I'll take it if I start having pain, though.

Another interesting side effect: I seem to be dehydrated. Let's just say that throughout the BP, my liquid intake has remained stable (approx. 88 oz/day), but my output has been quite a bit less than normal. What's up with that???

I was too tired to take Tuesday pics last night, but I promise to get some tonight.

My parentals are coming to visit this weekend. I hope I have the energy to entertain them!

Tuesday, October 2, 2007

Day Somethingorother - Too Tired to Care

The title says it all.

Is it that the pred-no-doze no longer keeps me awake through the pain meds?

Is it some secondary infection?

I don't know. I do care - I care about going to bed.

2.5 hours of work down. 5.5 hours to bed.

Beeeeeeeeed.....

Monday, October 1, 2007

Day 21 - Side Effects

I think that the pred-no-doze had one very positive side effect. I think that it countered the GI issues that crop up for me on certain medications.

And now I'm no longer taking it. And my stomach wants me within 100 yards of a bathroom at all times. Seriously.

In other side effect news, I feel sloooooow, sleepy, and totally mentally sluggish. Actually, sluggish is an understatement. I feel stupid.

I want my bed. Bad. I want to curl up in it and hibernate til the BP is gone and I can be normal again.

At least the meds seem to have stopped the pain. Yesterday morning it was sufficiently excruciating for me to just pop a muscle relaxer and go back to sleep when the alarm went off. Today I don't have that luxury. Nor will I for several days now. Joy.

Sunday, September 30, 2007

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.