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Janine's Diary - Week 3



Day 15 - Saturday 8th March 2003

Did a few errands with the family. I have a very hard time being outside moving around, especially if it’s bright sunlight and windy. I wore my safety glasses most of the day. I have a clear pair for inside and a dark pair for outside. They really help a lot. I’ve banished worrying about what I look like to the world for the time being.

My ear and side of my face hurt a bit on and off today. Tonight it was getting bad. Had to take a pain pill. I really want to read online and send emails, but it’s too blurry, and it hurts my eye. Tonight I feel the least dizzy since the vertigo started.


Day 16 - Sunday 9th March 2003

Woke up 3:30am; couldn’t sleep. Finally read Rob’s entire diary after select all/copy/paste into word processing program so I could change the font size and color. Then I kept my right eye shut with my finger, reading with my bad/left eye. Sounds like Rob had much worse symtoms than I ever did.

Today I feel really good. A little stumbling if I’m trying to walk other than the straight and narrow. My right eyelid is able to close a tiny bit this morning. My ear is really itching bad inside, but I think I may have gotten water in it while in the shower.

I was thinking today about how I can’t wear any makeup throughout this ordeal. I could probably put it on okay, but it would be very difficult and uncomfortable to wash it all off. Oh well, I’m getting used to not wearing it and it certainly is a lot easier to get ready.

I still blow dry my hair. I need to put a few eye drops in, and then I make sure I’m wearing my clear safety glasses.

I noticed that it’s easier to walk around barefoot. Having to put shoes on to go somewhere means I have to take on my toddler walk.

Did great today, even my eye. We did some shopping for a few hours.

Popcorn is one food I can eat without feeling impaired.

The ear pain started getting steadily worse until I had to take a Tylenol w/codiene. Knocked me out completely. Can’t take them anymore unless I’m going to bed.


Day 17 - Monday 10th March 2003

Feeling dizzy. Meclizine doesn’t work. Spoke to my primary care doctor. Filled him in on the RHS diagnosis, and that I’m taking Prednisone again. Asked him to fax a referral to my eye doctor so I could see them for the problems with my eye.


Day 18 - Tuesday 11th March 2003

My eye is really clogged with ointment. I’ve been up for an hour, and I still can’t see.

Went to eye doctor. Got some better eye drops. I’m now using Refresh Liquigel by Allergan. These are a little thicker. It helps with the dryness, but makes seeing worse.

The doctor said I shouldn’t be wearing the eye patches at night; that my eye could get scratched if it opened. Instead, I still need to put the Eryromycin ointment in my eye at night. That should be enough to protect my eye with the little showing below the lid. In the morning I’m supposed to put some more ointment in the eye. Then use the drops for the rest of the day. Of course, the ointment means I can’t see well at all when I first get up. Try reading the water level on a baby bottle when you can’t see.

Had some ear pain today. Took some Extra Strength Tylenol.

Now I’m hearing a big base drum in my ear. Great. Called the ENT doctors’ office. They said as long as it’s not painful or bleeding, I can wait until my appointment tomorrow; otherwise go to the ER.


Day 19 - Wednesday 12th March 2003

Slept allright with just ointment and no patch on my eye. I didn’t like having to put more ointment in my eye in the morning.

Went back to the ENT office. Saw a different doctor. The previous doctor I saw is retiring. This doctor gave me some tough but truthful answers. It was hard to hear, but someone had to say these possible outcomes to me. He talked about BP having a 90% full recovery, but RHS having 20-30% less of a chance of a full recovery. He talked about how long it takes for the nerve to repair itself, and how long of a distance the repair has to travel. He said we may need to wait up to a year to see the how far the recovery will go. He mentioned gold inserts implanted in my eyelid. He said that my debilitating vertigo episode left permanent damage, but that my body is reestablishing itself to be balanced; it just takes a while. They gave me a hearing test, and my hearing is fine. Yeah. He said the big base drum banging in my ear could be a sign that things are repairing themselves.

I was a bit depressed throughout the evening. It bums me out that I can’t smile at my baby. I’m just going to pray for a full recovery.


Day 20 - Thursday 13th March 2003

A lot a trouble seeing this morning. It takes a while for the ointment to wear off. Still a bit depressed today. My husband is going away this weekend for business, and I’ll be trapped at home alone with the baby. Not being able to drive really bothers me.

I need to cheer up.

I spoke to my OB/Gyn doctor on the phone in the evening. I wanted to fill her in on what happened that Sunday at the ER. She was shocked that the first ER doctor had insulted me by ignoring my facial numbness.

We talked about me having another baby. She said I needed to research other people with RHS who had babies and see what their experiences were like. Since pregnancy lowers your immune system somewhat, my doctor said the virus could flare up again, but that I could take meds as a prophylactic. There is always a way to work around things.


Day 21 - Friday 14th March 2003

Didn’t wake up in the middle of the night to take a pain pill. I’ve been up for two hours, and I still can’t see. I’ll try taping my eye shut tonight to avoid using the ointment. Somehow I worked on the computer for a while. It’s amazing how I’ve learned to read blurry.

I had some ear pain this morning. Not too bad, but enough to be uncomfortable. The pounding is there too. The blisters in my ear are almost gone now. Let’s hope I don’t have a flare up. I took my last Predisone yesterday, and I take my last Acyclovir on Saturday

I’ve noticed that my face shifts to the left, now that there’s no pulling from the right side. One positive note about the facial paralysis, is that I’ve stopped aging on that side. No laugh lines or forehead wrinkles are present. No need for Botox here.

Today I’ve been super dizzy. I feel like I’m on 'Mr. Toad’s Wild Ride.' My depth perception is off. So much so that I broke a glass in the sink. I had to have Sandra come over and clean it up, or I may have cut myself.

My parents came over for a visit in the evening and brought me some dinner. Enchiladas, rice and beans; the perfect meal.


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