Mother’s day 2013 was a day many people were celebrating with their mothers here in the United States. It was also the day my life changed, forever. I did not know it at that time but I was in the early stages of a severe case of Bell’s palsy.
Mother’s day and the next day, I slept most of the time. Everything I tried to drink or eat tasted funny. I knew something was seriously wrong but I had no clue what it was. Then I woke up on May 14, 2013 and saw how twisted my face was and I panicked.
I called my mom who was headed out of town, and as I did not want to freak her out so I called my sister who is a nurse. She came right to my home, took one look at me and rushed me to the hospital. The diagnosis was Bells palsy. My blood tests all came back normal as did the scan. I was told perhaps stress caused it as my blood pressure was a tiny bit elevated.
At first, I thought I would be able to kick this, as my daughter had 17 years ago when she was 9 years old. However, there is a world of difference between getting this crap at nine and forty-six.
As May rolled into June, I was not seeing many changes. The nerve pain from the Bell’s palsy was unreal. For the first time in my life, I was welcoming prescription pills. I was the type of person to try natural things for pain relief and hated even taking Tylenol.
My face was very twisted, so much in fact, that blowing my nose was impossible and I could not smell anything. I found I could not breathe when I used one pillow so I slept on the couch where my pillow rested over the arm of the couch.
My left eye would not close and would remain open for 38 days. I mean wide open. had to use an eye patch for the duration every time I went outside. I had to use eye drops during the day and ointment during the night to prevent eye damage. I could not blink or wink that eye.
My tongue hung to the left side of my mouth, my taste buds quit working, and I talked so strangely. Most everything I ate or drank tasted bland, except for sweet stuff. My lips felt like needles were hitting them when I got in the shower. My jaw was so stuck that I could only open my mouth far enough to use a straw or smoke a cigarette.
I remember there was a hailstorm, when I was in a building with a metal roof. The sound that made was loud, and while everyone was at the doors watching the hail pound the ground I thought I would die due to the noise level and the pressure in my ear.
I was very depressed towards the end of June and my doctor put me on Prozac. I do not think it helped and it certainly did not do anything to help the reason behind my depression.
On July 20, day 70 for me, my jaw cracked and I could finally use a spoon to eat food. I still had servere impairment on that left side, but I could finally say more than one word at a time, even if they were garbled.
In mid August, I asked my primary care provider for a TENS unit as I had heard that might help regain the use of my face. I was desperate to try anything at this point to be normal once more. I finally got it in mid October; it was a rental unit that my insurance company would ‘rent’ for me for two months.
My primary doctor finally agreed to send me to a neurologist in November as I entered my sixth month of this Bell’s palsy. I was on a waiting list for Neurology at Geisghner, which is a specialized hospital a few hours from my home for the rest of November and throughout December. So when I saw the primary again in January I asked that they make me an appointment in the Neurology department at the hospital just up the street from my home.
I got in to see that neurologist on February 7, 2014 and he said he was not optimistic that there was hope for me at all. I mentioned that I thought my primary had dropped the ball and he slowly shook his head. I was so angry at that point. I wanted to sue my primary and make her pay for my face. I realize she did not give me Bell’s Palsy but thought that due to her inexperience with this condition, I was paying the ultimate price.
Anyway at that appointment, the neurologist referred me to physical therapy. He was not optimistic about that outcome either but it was worth a shot he said.
I first saw the PT department on February 11, 2014 five short days after the appointment was made. I had a swallowing evaluation, which I passed and began my four months of speech therapy.
The speech therapist also explained exactly what a TENS unit does. Apparently a TENS unit helps muscles, and while it was good at keeping my muscles in shape it did not help the nerve at all. So I returned the rented TENS unit and she began using vita-stim on my face and it helped. My speech returned somewhat and I had the greatest healing with that machine. Unfortunately, my insurance company allowed me only 20 visits so my approved visits ran out before we wanted them too. I am still doing the facial massages and other exercises to help my face.
During of one of those speech appointments, I asked my therapist when folks with my condition usually come to her department. She told me it was usually in the first weeks of the onset. She went on to say she would have liked to see me when my eye first was able to close on day 38 or at the latest on July 20 for optimal outcome. Since I was almost a year into the Bell’s palsy at this point, my optimal time had long passed.
On May 5, I had a sleep study done because I was waking up with a very dry mouth, napping often, had no energy and my snoring was very loud according to my son who lives with me. I got the results on June 4, and I failed that test. I slept 5 hours for that test and during that time, I had breathing problems 37 times according to the test results. My soft palate moves very little, and is mostly paralyzed due to the Bells Palsy. My oxygen saturation was between 88 and 94 when I was sleeping even though the head of that hospital bed was inclined.
It’s early June 2014, and while I have had some improvement, I am far from healed and I never will be. My face looks normal at rest, but when I smile or laugh, it is a whole other world. My left eye closes when I speak, laugh, talk or eat anything. The left side of my face sags all the time, and occasionally I still get the questions I hate, such as “did you have a stroke?”
I still use drops and ointment for my eyes. I still wear sunglasses with sides on them, as I still have no control over that top eyelid. The eyelid is control by the facial nerve that is not working, so when I look down or up I get dizzy.
My nose is straight but I cannot blow it because my soft palate is paralyzed. Once that is stuck, it stays stuck. I clean my nose out as I have since the Bell’s started, and that is with a q-tip on both sides. I snore like a freight train, and have trouble breathing at night still. I now have a wedge pillow so I can sleep in my bed, and it is almost heaven to sleep a whole night in my bed and stretch out. I missed smelling the spring flowers for the second spring in a row.
My taste buds are still shot, and sweet things are my choice, as they taste normal to me. My jaw will only open enough to eat a burger and the bun, I have to skip the rest of the stuff as my mouth will not stretch that much. I quit using a straw around Easter (my eleventh month), but if I take more than a few sips into my mouth I droll like a baby.
Loud noises still hurt and I live right in town where I hear sirens on almost a daily basis.
My speech gets very garbled after five or six hours so I have to limit my work as a home health aide. My neurologist and speech therapist both have told me to do no more than 5 or 6 hours of work a day as I use my voice a lot at work. I cannot live off pain pills nor can talk as much as needed to work, as I should to support myself. It is a catch 22.
Now that my eye is 60 to 65% back I can write to help supplement my income, but times are still hard. Writing is what I did full time before the Bell’s hit, so it is nice to get back into the swing of things, but I wish I could do more. My eyes tire easily.
I have noticed that because my face looks different from normal, people treat me differently. Some of it is nice and very much appreciated and then there are the other folks who treat me as if I have a mental handicap. My brain has not been affected and I am a college graduate. I hate when people dumb things down for me. Please take a lesson from this and do not treat people as if they have a mental handicap unless you know it for sure.
This is my life and I live it as best I can. I try not to talk too much as I hate my voice and am often asked to repeat myself. People often ask if I have had a stroke or something. I tell them, nope its Bell’s palsy. That usually leads to a discussion about it and well, it is hard to say the words that I must.
I usually tell them to place a finger on the upper cheek and gently pull their eye downward. That is how I feel; my eye is always being pulled down. Except the feeling does not go away when I take my finger away, it’s been that way for over a year now. It distorts the vision in many ways.
I tell them to pull down on a corner of their mouth and the lower cheek. Now imagine the eye, moth and cheek all being tugged downward. Gravity constantly pulling on these areas is painful to say the least.
This is my life, every single waking moment of every blasted day and night. It is my hope in sharing this that people will come to understand this illness. I also hope there is a doctor out there who can help me, my doctors all say there is no hope for me, and I really do not wish to live out my remaining days on earth like this.