Being Deaf, Well, Mostly Deaf

 In my 39 years of teaching private music lessons, only 1 student has ever quite once they found out I wear hearing aids.  The ironic thing about this was this was after her mother gave me a really good review.  It was during her 4th vocal lesson that the student saw the thin cord of the hear aids on my ear.  She asked what that was and I told her.  The next day, her mother called the company I was working for and quit.  The company did know about my hearing loss and the fact that I wore hearing aids so they weren't surprised about that.  What they were surprised about was the week before the mom gave me a 5 star glowing review and now they were quitting because of  my hear aids.  The only reason I know about this is because the counselor who took the call, called me right after.  She was furious.  I was very upset about  it too, at first.  Then I just  had to shrug it off.  It was the first and so far, the only time that has ever happened.

When I was 13, I had gotten a cold and my mother was a firm believer that if you did not wear a hat,  you would get sick.  This was the late 70s/early 80s.  No one really understood virus-bacteria differences yet.   Well, I really hated wearing my hat.  This was also big hair days.  So I had a cold and did say much to my mom about it.  We had cold medicine at home so that is what I took.  A few weeks later, my ears were blocked.  My ears were blocked from about the end of October to mid-May.  This was not something I said anything to my mom about.  The reason? Remember, I WAS 13.  I thought I would get in big trouble because I wasn't wearing MY HAT! What can I say?  Teenagers get the weirdest ideas in their heads, don't they?  After watching a great many teenagers grow through the teen years, you never know what they think of next.

After my ears were blocked, I really couldn't hear much at all.  There was one particular person who would get mad at me daily because I couldn't hear what she was saying at lunch.  After about a month of the ridiculous tantrums  of why can't you hear me, I just ignored her at lunch unless she was sitting next to me.  Looking back, it was insane.  Someone was supposed to be a good friend, got mad at me because I couldn't hear her?  Wow. Whatever.

By Christmas, everyone of our friend group was used to me not hearing very well in the lunchroom or anywhere really.   

I had the same teacher for Math and Science.  In the beginning of May, I must have really answered very strangely because the girl who sat next to me, Julia, passed a small note asking if I could hear the teacher when he asked me the question.  I sent it back, saying no.  Everyone in that class was also in the same band class as me.  I also had know Julia much of my life.  She lived down the road from me.  In the five minutes between classes my teacher motioned for me to go to his desk to see him.  He was standing and asked if I could hear him when I was at my seat.  I said no.  He then asked how long has it been since I couldn't hear?  I said since October.  He flopped in his chair shocked.  He said, you have not been able to hear since October? I said, yes.  He said okay, go sit down.  He must have called my mother right after school. When I got home Mom told me about the phone call and she said that I had an appointment the next day already.  

I had surgery on my ears about a week later.  I don't remember too much about it.  In the end, it turns out I am one of the small percentage of people who's ear infections that do not hurt.  The ENT said I should have been screaming in pain for months with how bad the infection in my ears were.  I did get some hearing back.  Unfortunately, the infections did do quite a bit of damage and I could get all of my hearing back.

It drove both my brothers crazy that I was partially deaf.  They both would holler for me from the back door and I would be in my room so I would have to run down the stairs to see what they wanted.  Eventually, my mom say one of them doing this and she stopped.  She told both my brothers that if they want to speak with me then they needed to take their shoes off and go upstairs or downstairs to where  I was.  To this day, I do not think either one of my brothers even remembers that I wear hearing aids and what the percentages are of what I can hear.

Side note: When one of my students was little, she loved to tell her friends that her singing teacher was deaf.  She thought that was hilarious.  Then she would say, well, not completely. Little ones are so funny.  You never know what they are going to say!

Fishing and Me

 When I was a child, we camped quite a bit.  I am unsure the first time I went camping, I am thinking probably about 4 or 5.  I am an extremely prissy girl.  I absolutely hate getting dirty, I always have.  Generally, I am not all that fond of being outside either.  Strangely, I loved camping.  I also really disliked the sticky feeling of the anti-Mosquito spray Off.  I could not go in outside without it on.  Mosquitoes loved me so much.

Anyways, I digress.  After my parents got divorced, my mother kept the trunk of her car packed except for fresh food that would go in the cool and our clothes and such. We camped so much that summer.  This particular memory to this day still makes me laugh.  As much as I love camping, I really did not like fishing.  I refused to put the worm or bait on the hook, I would hold the pole, I would not touch the fish, I would not clean the fish, I would cook the fish, and depending on what kind of fish it was, I maybe eat the fish.  Don't hold your breath  though. My brothers really did not like fishing with me. For some reason, I have no idea whatever gave them this idea, that I talked too much and scared all the fish away.  I have no idea why they would ever think that, just because my mother called me her chatterbox, seriously.

This particular weekend, I don't remember where we were going, my younger brother and I were loading our toys in the trunk of the car.  I had more room for toys and books than my brothers.  They started to complain when mom said do you want her to be quiet or not while we are in the boat fishing?  One of my brothers, I don't remember which one, said, can't we just leave her at the boat launch?  My mom was horrified at that, she said no, we cannot leave your sister at the boat launch.  If you want her to be quiet she needs to take her books and toys.  At that both brothers began emptying the trunk of their toys and books.  They then loaded more of mine.  They did leave some of their toys and books just not all of them.  They previous school year I had really got into reading. I had had  a lot of difficulties with reading and by that summer I simply loved to read.

Much to my brothers surprise, I was quiet the entire summer when we all went fishing.  I did not fish at all, nope.  I read my books and had lots lots of adventures in my imagination!

Sometimes I really miss those days.

A Mother's Promise

 At 17, I had my first Fibromyalgia flare. I missed about the last 6 weeks of my junior year of high school.  It was awful.  Then the pain just went away.  After I graduated  University, that was when the Fibro really started and never went away.  Like so many of us, no one knew what was wrong with me. My mother took me to so many doctors. The last one we went to told my mom that I was emotionally disturbed.  She was furious, so furious that she wrote a letter to the AMA. 

After the disastrous last doctor appointment, my mom sat me down to have a chat as she calls it.  She said we were on our own.  Mom promised me that she would be with me all  through it.  She never broke that promise.

In March 2003, I got Vasculitis.  It is actually because I got Vasculitis that I got diagnosed with Fibromyalgia.  Most people who get Vasculitis, it is chronic and it doesn't go away. Me?  I got lucky.  With the exception of the daily headache, everything went away. This is what started the never-ending daily headache.  I was having a few issues in December 2003, I didn't think it was vaculitis, but I wasn't sure so I made an appointment with a doctor at the Cleveland Clinic.  Mom and I went down there the night before and stayed at one of the hotels on the Clinics Campus.  

The next morning we went to the appointment at one of the hospitals, there are several.  Unlike most doctor appointments, the doctors at the Cleveland Clinic encourages family members to go with the patient in the appointment.  There is where I was officially was diagnosed with Fibromyalgia. I cried.  It had a name. I looked over to my mom and she was crying too.  She said the same thing.  It has name.  On the way home mom again promised we would get through this together. 

Because of the support she gave me, when the Alzheimer's began to get into the end stages, I was able to  to keep her home with me until she passed away. 

The Yearly CT Scan

 Every year since about 2007, I have had to have CT scans or Ultrasounds on my abdomen because I have 2 cysts that are benign.  There usually are no surprises or anything, well, until this past week.  I had to switch urologist because the one I went to did nothing t accept the new insurance that I had.  I found another one that my primary doctor suggested.  He was really nice.  He retired so I have a different doctor from that practice.  Thursday, I thought I had a Telehealth appointment, however, I guess it got changed to in person and no one told me.  I called at 10:30. That is how I found out. The person I was speaking to was very insistent that I have an in person appointment.  I did think it was a bit strange, but I made the appointment.  I was extremely unprepared for what I was about to hear. The is another mass and I have to have a biopsy this coming week.  There is a 70-80% chance it is cancer.  I am trying to not think about that  too much.  I am very anxious about it. My ADHD brain has been racing ever since.  All I right now is I have to have a biopsy.  I am working being strong. I am a work in progress. 

Was I a Mistake?

 March 24, 2025

For as long as I can remember I have thought at times I have thought God had made a big mistake when He made me.  I can remember when I was around 5 there would be nights where I would cry most of the night.  My mother would be holding me most of the night.  I would rarely go to school the next day because I would be so exhausted and my eyes would be very swollen.  This would happen a couple of times a year. I would sleep all morning and when I woke up, I would be okay.

It took years and years and years for me to believe that I was not a mistake.  Unfortunately, it wasn't until I tried to kill myself. The first time I tried, I was a junior in high school.  I Took a bottle of meds.  It was not pleasaant when I was brought to the hospital.  This was also my first flare up with Fibromyalgia. The last time I called my older brother before I  was going to take anything. He saved my life that night.  He stayed on the phone with me until our mother came home from Toronto.  

I have had extremely bad anxiety all my life.  I now know that a good percentage of my anxiety is from my ADHD.  I was only diagnosed with ADHD in 2021 or 2022. I have been fighting an eating disorder since I was 14 when my pediatrician put me on a 400 calories a day diet. It is extremely difficult to only eat 400 calories a day.  Hence the beginning of my fight with Bulimia.  (This was in the early 80's so the thinking of diets was completely different than today) I had to get weighed every week.  My mother had to keep track for the doctor.  Eventually, my mother came to realize that 400 calories a day was not good for me and stopped with weekly weigh-ins, especially when I started with the Fibromyalgia.  Things got a whole lot better then. 

Knowing your worth is so important.  I finally learned my worth about middle junior year at Wayne State. I can't remember what song I sang to anymore. I would get told that I was really dumb. I wasn't as pretty as some of my friends. 

Kathy to the Rescue, How She Saved Me from a Major Meltdown

 It seems like a lifetime ago now.

I missed the first day of Kindergarten.  We were driving home from vacation.  It was a two day drive from Florida.  My older brother was beginning 3rd grade and my younger brother was starting preschool, which was at our church.  He had finished Nursery School the year before.  That was how Kathy and I met.  At church and Nursery School.  We were three.  

Mom and Andrew went to school with me.  Richard walked to school with his friends.  When we found my classroom and mom was saying goodbye, I was super confused and starting to melt down.  No one had explained that I had to stay at kindergarten all morning!  I thought we got our work and went home to do it.  I was really wrong.  As I was beginning to meltdown, Mom spotted Kathy!  Mom pointed out Kathy and the chair next to Kathy was empty.  Meltdown avoided completely.  I just said, bye mom and walked to see Kathy.  She seemed relieved to see me too.  Kathy and I were together all the time.  We were partners when we needed go have a partner.  We rarely fought.  I can only remember 2 big fights in our whole friendship up to date.  One was in 3rd grade and the other was in 6th grade.  That was really about it.  Oooh, I did get mad one day in our band class during our senior year and one day in our theory class in our senior year.  

Kathy was very shy.  She rarely spoke in school.  I, on the other hand, was what my mom called a chatterbox.  I now know that for me, the chatterbox is a part of my ADHD.  We didn't know back then.  I was just really glad I found a friend who would listen to my chattering and she found a friend who would talk to her.

By the time 3rd grade came along, we were still in the same class.  We were both happy about that.  In 4th grade, against both our parents telling m the teachers that splitting us up would not get Kathy to speak more in class, they still decided to separate us.  At that time, I was viewed as bossing her around.  I did not.  The results they wanted did not happen.  Kathy said even less.  It also proved that I did not boss her around. We were never in the same elementary school class together again.  This broke my heart.

Junior high and high school we did have quite a few classes together through those years.  We were in band together for most years, not all, just most.  We were in band class and I sat behind her. She was third chair and I was fifth chair.  Kathy would actually turn around to talk to and then I would get in trouble.  She did this for a few days.  My breaking point was a few days later in our music theory class.  Our friend, Dave and Kathy were getting me and Dave in trouble for talking a few days before.  I purposely sat all the way across the room from them to stop them getting me in trouble.  Ha, when they started talking, I lost it.  I picked up my books and stuff, I said it isn't me!  It also isn't me in band class!  It is Kathy.  Then I burst into tears and left the classroom to go home.  When I got home, I called my mom and told her if any one calls to say I left my 7th hour, well, I did.  Mom and I talked about when she got home.  I didn't really get in trouble for leaving school, I was just told not to do that again.  The next day in band class, Kathy turned around to talk to me and she got caught by our teacher!  The teacher was standing, but she had to sit down.  She actually apologized to me. She also said I had a reputation of talking a lot.  I rarely talked in any music classes.  Rarely.  In theory class, I sat, again across from Kathy and yes, she also got caught.  Even though I was not a popular girl, there were a few kids in the class who told our teacher that it had been Kathy from the beginning of the year. That teacher also apologized and asked if I was sitting across from my best friend because of this. I said yes.  The teacher told me I could go back to my original seat and she would not blame me for others talking.  I moved back.

These are just a few of our adventures.  There are so many more!

Cymbalta

 About a month ago, I saw an advertisement of SwingCare, which a one of a kind group of medical professionals that work with only patients who have Fibromyalgia.  It is a virtual office.  I did contact them last year  UT they did not accept my insurance.  The person I spoke to told MD to check back because more and more insurances were being added as time went on.  The second time I contacted them, my insurance was accepted after being added sometime last year.  They work with all aspects of Fibromyalgia.  My first two appointments went so good.  The doctor added Cymbalta to my meds.  I had tried it years ago.  Many years ago.  I was up for trying it again.  

After a month of taking the generic of Cymbalta, I have noticed some good changes.  The biggest one is my sleep has improved.  I actually can sleep 6-7 hours straight through.  This is huge for me.  I generally, for years, woke up every 2-3 hours from pain, and then I would need to get out of bed to get back in to lay on the other side.  Not now.  I also think it has helped my mental health.  I never thought I had I had any kind of depression, however, being in pain 24/7 for about 32 years does cause some issues.  The Cymbalta has helped.  I had an appointment with my doctor last week and I am very pleased with the plan that we are following.  Sometimes it is really hard being in pain all the time.  I do my best and try to keep a good attitude, sometimes it is hard.