I Missed the Anniversary!!

 December 8th has been an important date to me since 1983.  That was the day I had my surgery to straighten the center curve of my double S Scoliosis.  I have a small curve in my cervical spine and a small one in my lumber spine, of which neither could be corrected as I would never be able to bend or sit or turn.  At the time, the surgery I had was revolutionary.  Prior to this invention, patients would have one rod fused to their spine.  It was a very long recovery.  Because of the newly invented clips, I would have 2 rods fused to my spine.  One was a straight rod, as with the normal surgery, and the other looked more like the edge of a drawn pine tree.  I would not have a cast or a brace.  Patients with only the one rod, had a cast right after the surgery for several months followed by a brace for several more months.  My back was taped for a few weeks then there were 3 stitches that needed to be taken out at home and that was all for that.  Then I had to be careful not to twist or be bumped too much.  I did get to miss quite a bit of school.  I did not mind that.  School was not my favorite place.  The only thing that worried me was solo and ensemble was coming up and I was not quite ready yet  

My mom did bring my clarinet with us to the hospital, well, to her friend's house where my family was staying.  About 4 or 5 days after my surgery, she brought my clarinet into my hospital room for me to play.  I could not get a sound out of it.  I was so upset. I burst into tears.  How could I not play my instrument?  I had to play my solo in about 2 months or so.  Mom tried to calm me down.  I was too upset at the time.  I wish I did remember what happened later that day but I don't.  I do know that kby the time I was home a day or so, I could get sound out.  It crushed me that it took that long.  No one warned me about that.  Music was and still is my life.  As my friends say, I eat, sleep, and breathe music.  My head is never quiet of music.  I have music in my head all the time and I always have.  That is just me. 

December 8, 1984 was when I was finally allowed to twist and do all those things I was to be careful about.  Good thing, only about 4 months too late.  Marching Band Season started in August 1984.

Oh, and I got a II on my solo.  I was very disappointed in myself because to me it meant I did not prepare as well as I should have.  It was the only II I had ever gotten on a solo.  All the others were I's.  Everyone else was thrilled.  I was not.  Can you tell I have ADHD and perfectionism??  Looking back, it was a good rating because when I said I got a sound, it was a very soft thin one.  It wasn't until about 2 1/2 weeks  before the festival that I could actually play with a decent tone and dynamics.  Had I had more notice on when the surgery was going to be, I would have started learning my piece much earlier.  We didn't.  It was a matter of: this day is open so take it.  I think we had maybe a month notice.  Missing a month and a half of good practice was awful to me.  However, having a straight back and then learning to dance afterwards was well worth it.

Very Tough Last Few Months

 These last few months have been so horrible for me as far as pain goes.  The last month, I have been back and forth between sleeping in my lift chair and my bed.  Tonight and the last two nights have been the lift chair.

I do not know what I did but it feels like electric shocks on my right elbow.  My left upper back is really painful right now.  

Wow.  I started this last night.  I must have fallen asleep.  Crazy.  Yesterday, A talked about wanting to begin piano again.  He says he stopped because of not knowing when he could have a lesson.  He said like with the new shoulder blade thing today.  He said he never knew if I would end up in the hospital.  He didn't say it in a mean or a cruel way, just a matter of fact way.  I got what he was talking about. I let him let out his frustration.  I get his frustration.  It was also really hard not to say something like, how do you think I feel.  I refrained from doing that, hard as that was.  

Well, as this is the third time I have tried to finish this, I think I will have too.  Tomorrow at 9am, here at home I will have an OT Evaluation as I not only cannot wash my own hair, and haven't been able to for years, I no longer can brush my own hair.  Thursday, Thanksgiving Day, Kathy brushed my hair for me before we walked into her mom's house.  I am both extremely anxious and happy about it at the same time.

Do you ever get sick of being sick?

Today is just one of those days where I so tired of being sick.  I feel like I have been sick for so long that many people never knew me when I was healthy.  Last week I had a zoom meeting with a PA on my results of my 360 Health Assessment.  It was interesting.  Hormones affect  so much of bodies and systems.  I really would love  to work with the doctor, I don't have any money to at the moment.  Perhaps in the future. Right now I have much on my plate  and that would push me over the edge.  

I have had a setback in my sleeping upstairs. I almost slept every night for a week in my bed in my room.  The last 2 nights I have had to sleep down here again. I will try again tomorrow.

Dinner is ready.  A made tacos!! Yum.

Music is an Expression of Yourself

I can not remember a time when I haven't heard music in my head.  It also is a good distraction when the pain is extremely high.  It doesn't quite work as well for a distraction when I am getting a blood test, blood pressure test, or botox for migraines, or basically anything with a needle.  I do my best, however, sometimes, it isn't enough at times.  

We were lucky in that our mom really wanted us involved in music.  Band, choir, she wanted us to do it all.  Both of my brothers at one time played the saxophone and trumpet.  I started on flute and switched to clarinet.  I haven't stopped yet.  When I got my wood clarinet, mom said that the day I stop playing it, it goes back to her. Hmmm, I haven't stopped yet.  I don't think I need to worry about that.

One of the first things I teach students is music is an expression of yourself no matter what instrument you play or sing.  It is an easier explanation of what interpertation is.  Interpertation is not something that can really be taught because it is so individualized.  I could play or sing, the exact notes, rhythms, everything as another and still it would not be identical. Why?  We are 2 different people.  I have friends who think it is cool to always have music in my head and some that think it is weird.  It is probably both depending on the day, time, and where I am.  Oh, and pain level.   

I Hate Food!!!!

It's true.  I hate food and what it does to me.  I don't care what it is called.  Eating disorder or disordered eating.  Whatever.  It has the same reaction. Tonight, A went to the upright freezer and wanted one of the ice cream sandwiches that I had bought over a week ago.  Well, they weren't there anymore.  I finished the last one on Saturday.  There were four and he hadn't eaten any of them, so I didn't think he wanted any.  I was wrong. After a few minutes of both of us going on and on, it came to the realization on both our parts that I needed to let both he and B know what was up with me and food.  When A said that they couldn't help me if they didn't know what was going on, I about fell over.  I never had anyone say something like that before.  He said I needed to let them know what I needed to help me.  So, I thought about it and identified three things.

1 - Shopping.  It would really help if I didn't shop by myself or if I didn't shop at all.  I am going to give B my card tonight to hold for me.  I don't want to have easy access to my card.

2 - Portion Sizes.  It really will help if someone helped me with the portioning of my food.  I have difficulty with trying to keep things at proper portions.

3 - Cooking.  When I am cooking, there are many times when the aromas start to really make me nauseated so I have to taste the food often to make sure the food is good.  By the time dinner is ready, I have already eaten enough for a meal.

4 - MyFitnessPal app.  I have started to use this app again to keep track of my food intake.  I have calories set at 1600 with 120 grams for protein.  

I have never had support before so this will be good, I think. I have had an eating disorder since I was 14.  I need to conquer this food problem once and for all.  It is the one issue I have yet to forgive myself and my mother.  I do need to be able to do both.

I Can’t Change Who I Am

It seems to me that for so long that the two things I hear the most are: you talk to much and you need to talk quieter.  A few weeks ago I read an article on how every time someone asks me to speak quieter, they are actually asking me to change myself.  I think it is the same with asking me to not speak so much.  I stopped giving lunches and teas because of criticisms I received after they were over.  Sadly, I can still remember them all.  One was I spoke about Peony the entire time one friend visited.  The fact that we were discuss Dogs must have gone over the head of the person critiquing my conversations.  Another was someone had asked me about my mom and I spoke of her ask she was still living.  She had only passed away 2 months earlier and I was having a difficult time with very deep grief.  I also didn’t understand what difference did it make.  I missed her terribly.  These are some examples.  Now when I get asked to speak quieter, I simply say I am deaf, no I cannot.  It has stopped people from continuing asking me this.  When a person who doesn’t understand why it is extremely offensive to ask me to speak quieter, I always ask them would they ask someone who was blind to look harder at something?  They say no way.  Then I point out. It is the exact same thing.  Then they get it.  

As for the speaking to much, I cannot get used to silent meals.  Even after all these years.  I did not grow up with silent meals after the divorce.  Dinner was when we all spoke about out day.  Sometimes I have to text Kathy about it.  It is really hard some days.  Even at the end of my little mother’s life, dinner was not super quiet.  My mother used to call me her chatterbox.  

I did have the reputation at school with many teachers who I had had for years as a chatty student.  Funny thing though, about senior year I stopped really talking in class.  That would have been about the time Katherine began to speak in class, naturally getting me in trouble.  Kathy and I had a Music Theory/Beginning Band class our senior year.  We had a friend named David in the class too.  For the first while in class, we sat together.  The 2 of them would not be quiet.  At first it wasn’t that big of a deal until I got told to be quiet and I wasn’t the one talking.  I glared at the 2 of them for the rest of the class.  The next day, I sat completely across the room from them, thinking I would not get in trouble because I was not anywhere near them.  I was so wrong.  In the first third of class, those 2 cause a bit of a ruckus.  What happened?  I got told to be quiet and my teacher didn’t want to tell me again.  What did I do?  A very grown up response.  I burst into tears and said it wasn’t me.  I grabbed my books and left the classroom.  I did not have a class the next hour so I went straight home.  When I got home, I called my mom and told her that if she got a call from the choir teacher that I left class early, I did and why.  Mom came home early from work as she had her Reserves that night so she would not have had a chance to speak with me about it.  Apparently she did call the choir teacher herself to find out exactly what all happened in class and after I had left, several students said that it had not been me at all for weeks but it was Kathy.  The choir teacher’s defense was, you know her reputation of chatting.  My mom said I do and now you know it wasn’t her, what are you going to do?  Yes, mom was hinting very heavily that I was owed an apology.  I got one the next day.  Mom did say she understood why I was so upset, she also said to never leave school like that again. Ever.  Go to the office or something.  Do not walk home during class.  Safety first.  Because this happens in the theory class, when I got in trouble because a certain best friend was turning around in band class to talk to me, she got caught and shocked the band teacher.  It is a lot humorous now to think about these incidents and how upsetting they were then.  I think Kathy is the only pers9n besides my mother who has never asked me to speak quieter or said I speak to much in a tone that isn’t very nice.  Kathy was very very very shy when she was young.  She rarely spoke anywhere but at home or with me.  Yes, I have been called bossy because it appeared as if I was bossing her around, I wasn’t.  It is weird, I could tell what Kathy wanted to play on at recess by the look of her face.  I would ask, swings, monkey bars, jump rope, etc….  There was a look in her eyes when she wanted to play on something.  I just knew.  I cannot explain how I knew.  I would get really offended when teachers would tell me to stop bossing Kathy around.  Both her mom and mine would say that I wasn’t.  Kathy was a strong person.  If she did not want to play on something she wouldn’t.

MRI Results and other new fun things

I have been having a bit of an issue with my toes tingling and the pain going from there up my right leg.  I had some home health care after I came home from the hospital with the cellulitis wound.  One of the Nurse Practitioners had asked me how I was doing and I casually mentioned the toe issue.  She looked at me and said to call my neurologiest right after she left and make an appointment as soon as I could get in.  I did.  On Monday, I will have a nerve test done then she and I will talk about the next steps.  The MRI was of my Cervical Spine.  I have Scoliosis.  A double S curve as it is called, meaning, I have a small curve in my neck, the big curve that now has 2 Harrington Rods fused to my spine, and a small curve in my waist.  According to the MRI, my spinal cord is narrowing.  From what I have read, it is a normal part of aging, especially if you have scoliosis as I do.  Fun.  The non-fun things are that this possible may explain why I can no longer go upstairs, my arms are very weak, my elbows are super sore, my legs are also very week, and a few other things.  Now, it may not explain these things either as they could just be from my chronic conditions and I am just getting worse.  That is also a very strong possibility.  

Today was definitely a day of unexpected things.  For the first time in years, I could not brush my own hair.  Yup, seriously, I actually had to ask one of my students to brush my hair and put it in a ponytail. It was extremely upsetting to me.  So not only can I not wash my own hair, I cannot brush my own hair.  My base pain level is no longer at a 5 either.  It has jumped to a 7 or an 8.  I am beyond exhausted too.  If I stay in my chair most of the day, it isn't so bad, that is what I am trying to do.  The table that can go over my chair has been brought down from my room and that has been very helpful.  I am hoping not to have anymore surprises this week.  I am too tired for anything new.

I am definitely struggling with mental health this week.  Things have to get better. right?  Thankfully, I have my little Peony.  The absolute cutie of a pup.  She makes everything better.

 It is very late now.  Normal for me though.  I have been a night owl since I was a child.  it is also very quiet in here, the living room.  My beautiful little Peony pup is such a good companion.  She too, is a night owl.  

It has been really hard for me these last few weeks. I can’t stop playing words over and over in my mind.  Was the person joking? Serious?  I don’t know.  I am deaf, well, not completely, enough that even with hearing aids I cannot hear those nuances that normal hearing people can to know when someone is joking or being sarcastic or being serious.  I think the person may have been being the comments: you need to stop getting sick. You need to stop going to the hospital.  You need to make more money.

How do I stop getting sick?  I wish I knew.  It isn’t like I can say, okay, I am not sick anymore. I am chronically ill.  Chronic. Never ending.  Yes, I have meds that help with managing the biggest symptoms, they really don’t take away the symptoms.  I have pain meds that do help with the pain, however, I am still in pain 24/7.  The lowest my pain gets in 5/10.  This is including the headache I have had since March 2003.  Nothing has stopped this headache.

The next one: stop going to the hospital.  I would love too.  I am tired of the inside of the ER and of hospital rooms in general.  I really don’t go unless I absolutely have to.  The last time was about 2 months ago and it was for the cellulitis ii have.  

Lastly: you need to make more money.  I am rather aware that I do.  It is really hard knowing that I have to keep track of every detail I spend.  I hope not to some day.

I am not holding my breath for any of this.

Living Room is Slowly Getting to Be a Place to Be

The living room in my house has changed looks very infrequent in my lifetime.  Growing up, you only could go in there when you were clean, so right after a bath.  No food of drinks of any sort were allowed in this room.  I had a small cousin once spill a sippy cup of grape juice on the sofa. His mom, my cousin, flipped the cushion over in hopes that my mother would not have seen it.  Of course she did.  My mother  missed very little that went on in our house.  When I saw him do that, I was not happy, I was like that is why no food or drinks are allowed in this room.  She will be so mad.  
She was as I suspected and for the reason I suspected, was it because a toddler spilled his sippy cup?  No, it was because his mother, my mom's niece tried to hide it instead of owning it.  Fortunately, the toddler had more sense than anyone.  He went right up to my mother to say, in toddler speak, he was sorry that he spilled his drink on the sofa.  He pulled mom to show her and then  they went and took care of it.  Not one raised voice, even when she said that she was a little mad that a toddler had more sense than his mother on telling the truth about an accident, which is what it was.  She said to my cousin, I don't get mad at accidents, I get mad at lies and cover ups of accidents.  Which was true since the little was happy to help her clean up. 

I no longer have that furniture.  That was the first big change I made to the living room.  After the store closed, 2 pianos came home, and I needed to teach at home so I would be with mom all the time, she was at the stage in Alzheimer's that is was necessary not to leave her alone, I had a few friends help me switch the family room and living room furniture around.  The cushions on the living room furniture needed to be replaced as they were crumbling and at other spots, rock hard.  Mom enjoyed listening to the few students I had at the time lessons.  She would come into the living room with me.  She would quietly sit on the sofa and listen.  Sometimes, she fell asleep.  I think that is one of the biggest things I miss the most, is having mom enjoy listening to the students.  

The 2nd huge change was to a big part of the house.  A friend of mine and her husband along with their 2 kids moved in after she and her husband and I decided it would be a good thing to combine households.  It has worked rather well for all of us.  I had some furniture to say goodbye to.  I made a post of facebook to see if anyone needed anything and well, within a day, everything was spoken for including the few exercise equipment that was mom's.  The furniture went to good homes and we are here comfortably.  At that time, I had three file cabinets full of music down in what became a bedroom again.  We brought the cabinets up and emptied that room after going through all the boxes.  HBT and I would just laugh every time we would open another box, I swear we would find another pair of scissors.  It was hilarious. 

I am not making big changes anymore, just small ones.  I have a new recliner that is really helpful with pain levels.  It is one that also lifts up to help you stand.  At this point, that rocks.  Sometimes, pain levels can rise really fast for me.  This time Cellulitis is different than the last time I had it.  I do not ever want this again.  nope nada I am done.  My best friend, Kathy's husband and one of her sons came to pick up 3 filing cabinets today.  Early in the summer I had gone through some of my advanced music and gave the music to a friend of mine.  Between the fibromyalgia hand pain and the arthritis, I no longer teach advance piano.   I gave it to a teacher friend who will be able to use all of it.  I asked if JH and TH could switch out the table I was using for teaching.  I wanted to use a smaller one as the bigger one I had ended up being a music pile holder.  I needed to eliminate that problem.  The small table is actually a better fit for the room and for my height as it is shorter than the other table.  I rather like it. I must empty a chair of music and a pillow so this chair can go elsewhere.  I need to file the music and not just move the music from one pile to another.  Just another step in getting the living room to a comfy and functional living/music room.

I Just Wanted to Have Really Clean Hair

 One of the side issues that really do not get addressed enough, I think, is hair.  This is something that many people don't think about, they just wash their hair.  It is an automatic thing.  For those of us with Chronic Illnesses, like Fibromyalgia, it isn't that simple.  It used to be.  When I was in high school in the early to mid 80's, big hair days, it took about 45 minutes for me to curl my hair.  I had thick hair and I spent a lot of time on it.  I thought it was the only feature of mine that was good.  It was so thick that when I put it up in a ponytail, the ponytail holder only went around my hair one time.  Now, it can go around 4-5 times, depending, so hair has always been rather important to me.  

Having a Chronic Pain Condition with no cure in sight, for me, makes something as simple as washing my own hair myself, really really hard.  In fact. in the last 15 or so years, I have probably washed my hair myself maybe about under 25 times total.   That isn't to say I do not get it done, I just do not do it myself.  Currently, when I clean my hair I use the presoaped caps that you can buy at any medical supply store or Amazon.

Today, I went down to see a friend who has Fibro just like me and she washed my hair!!  I mean with real shampoo and water!  I have such thin hair now that it air dries rather fast.  I  had lost a lot of hair when my Anemia was out of control and I needed iron infusions.  My hair was really straight, however, it grew back curly!! I love my curls.

The weird things you do not consider to be a bit of a how do I do this, challenge when you are in pain 24/7.  It is figuring out the little things that make your life easier and hopefully not cause extra pain or fatigue or any other symptom to flare up.

I Swear I Only Blinked Once!!

One of  the best things about my job is being a part of a student's growing up.  Because I teach music lessons and not music in schools, I am not limited to only one or two or a few years of the students.  Often, I have the students for a longer time.  Not always, there are many that will take lessons for a couple years and then try a different activity or sports.  Why not? If they have the option and ability to try, then try.  Yes, I think music is really important, however, I also think that kids should try new things and expand their horizons also.  I do agree that if your parents paid for a season of something like little league, then yes, you should play the entire season and if you do not like, do not sign up the following year.  

I would say, though, many of my students were students for at least 5 or so years.  It has really been wonderful to be able to at least teach a tiny bit again.  I have not been able to teach full time in about 17-18 years now.  The Brain Fog and other concentration/focus issues I have from Fibromyalgia is the reason why.  However, I can teach a very teeny tiny bit and for that I am very grateful.  I have really been lucky as far as students and their parents, the majority of them have been wonderful.  when you have students parents who really support their children, it gives their children such confidence, something that is so important.  

This year will be a bit of a hard year at times as one of my students, Q, is a senior.  Already!!!!!  Seriously!!!  How did this happen so fast??  Miss Q was in 1st grade and 6 years old when she and her mom came to meet me before they signed up for lessons. We three clicked right away.  Q has been such a joy to work with and to watch grow up.  She began with singing and then added saxophone.  She was in her school band.  One year, the school did not have a band teacher so that was when she began taking lessons with me.  Q decided to continue even after she was able to go back to band class.  She and I have had a lot of fun, and a lot of giggles too.  Like I said,  I only blinked once!

I can teach for a while before the fog closes in from fibromyalgia, then I need to rest.  After that I can teach for a little less time than the first time before I need to rest.  It does depend on the energy levels for the day.  Mornings are not a time to ever really teach.  I am usually just not with it enough to know much.

I think I need to just keep my eyes wide open this entire school year!  No blinking allowed.

Not My Day/Week??

 This week has had me in tears more than I have in a very very long time.  I swear I felt like tears could just drop at any moment and not necessarily for any reason.  Seriously!  What was up with me this week?  It actually started a week ago when I received a call on a bill and the person asked for Vivian, my mother.  This was an account that about 14 years ago, I asked them to NOT ask for my mother.  This was one of the rare times that someone has.  It was like the second her name was said a brick wall fell on my chest, that is how much it hurt and how fast the wind was knocked out of me.  At that time, I asked the person to call who needed to be called.  Again today, it happened.  I said please do not ask for my mother, she passed away 15 years ago and it hurts to hear someone ask for her.  Then the person said oh I see hear it does say to not ask for Vivian.  I was ready to jump out of my skin because of how much I missed her this week. When you had a really great mom that you were so close to, it makes sense that you would miss her a lot.  This doesn't mean I don't understand that she is in Heaven and is not going to be here when I wake up tomorrow, I do, it just means that we were really close and had an awfully lot in common.  

So, thankfully, it is Friday!  I was able to get some things done this week too. 

I have had this weird pain thing that had begun a few months ago.  I have a lot of pain in my lower back anytime I have any stiffness when getting up in the morning or in the middle of the night.  It can be up to a 9/10 or really close to a 10/10.  Yes, if does go away when the stiffness does, it just hurts so much while it is happening.  I find if I stay sitting up still for about 5 minutes before I move off my bed that it makes it easier to walk out the stiffness and the pain.

How much more of a burden can I get?

Raw

 I had always wondered what I or we, my brothers and I, had done wrong to make our father angry or upset enough at us to not want to see us or talk to us.  If, as he told us, the divorce had nothing to do with us, then why did he stop wanting to see us?  Well, believe it or not, about 44 years later I actually found out the answer.  It actually floored me.  The biggest problem is that I don't remember this too well.  I vaguely remember the call and I know I didn't want to so I said I wanted to stay where I was.  That is all I remember.

My father died a couple years ago.  It was almost anticlimactic.  In so many ways, he left our lives when I was around 9-10 years old.  After he died, I did stay in some contact with my stepmother for a longtime.  There were times when it waz hard for me to hear things like, he was such a good papa and he was the best husband.  Well, to my xtepsisters, he was a good dad, however, to me and my siblings he wasn't.  You have to show to be a good dad.  He stopped showing up.  You know who did?  Yup.  Mom.  Mom showed up.  Mom was there.  My mother never missed a choir, band, or marching band performance.  Dance recitals, that was way more iffy.  She missed a few until she realized how important it was for me to learn how to dance for what I wanted my career in.  Then,she didn't miss any.  I digress!  (Pesky ADHD!!!)

As I was saying, I stay in contact for a long while after my dad died.  Now before my dad died my stepmother had said at one point that it did not make a difference either way to my dad if I kept in contact with him or not.  That was when I actually realized, he did not care, he really didn't care.  That did hurt as I had been searching for him since I was a teen.  I even wrote a letter after I paid about $150 to a company that found his work address and his home address.  I wrote a letter to him.  I used Kathy's address as the return address because I was afraid of he saw my address he may think it was from my mom.  When I found them on Facebook and then talked to my stepmother for one of the first times, she mentioned getting the letter but they didn't know who it was from.  All I said was, it was from me.  If you had bothered to open it and read it, it would have been perfectly clear that it was from me.  They did not.

After my stepmother told me my father didn't care either way,I stopped contacting them for a really long time.  I think the next time I actually spoke to her was on the day he died or right before.  Fast forward to about 1 1/2 years after my father passed away.  I was speaking with my stepmother and she was saying how my father was always trying to teach her how to just put someone out of her mind instantly like he could.  She said something to the effect that that was what he had to do after we three really hurt his feelings when we didn't want to move and live with them on a farm.  I vaguely remember this phone call, very vagudly.  I do remember him asking me if I wanted to come live with him on a farm.  We all said no.  All of us saying no hurt his feelings.  Now that I think of the timing, I am not sure if my older brother was living with them or mom.  I don't remember the exact time of how long my older brother lived with them.  I was really quite shocked to find out that because we said no, that was why he cut off all contact.  My younger brother and I were really small.  Our world had been upside down for a while.  I don't understand why he thought that we would want to live with him.  The last visit we had with him, did not end on a great note.  They had a NYE party and my younger brother got blamed for the neighbors kids stomping candy in the carpet.  He did not do it.  I saw the kids who did do it.  I was accused of lying.  I did not lie.  My brother was too shy to do something like that.  Both me and my younger brother were so tired because our bedtime was not after midnight and we were falling asleep so we kept getting woken up.  Then, because I saw about 5 minutes of a scary movie, I came home with terrible nightmares.  Then months and months later we get asked about moving to a farm.

Life for me in upper Elementary School was not the best.  I am truly sorry that his feelings were hurt.  I don't think any of us meant to hurt him.  My life was so chaotic at that time.  The only person I even felt safe with was my mother.  At that point, I had been being sexually abused for at least six years, possibly up to eight years, by five different people.  I felt abandoned by my dad. I was at one time a daddy's girl.  Once he left us, after mom made her pinky promise, I was  Mommy's girl.  If you look at pictures of my around that time and until I was about 14-15 ish, when I am in a picture with me and mom, generally I am practically clinging on for dear life.  I had major nightmares and night terrors.  I still had a lot of major meltdowns when mom left for the reserves of cadets. It wasn't all the time, just pretty often.  The thought of moving anywhere without my mother was so frightening.  I do remember having a few nights of nightmares about it.  There waz no way I could have gone anywhere without my mom.  The world was not a very nice place for me.  How could I?  For this, he cut us out of his life, his mind, and his heart.  So for me and my three siblings, we were raised by strong mothers.  Our sister's mom did remarry and so she did have a really good dad and eventually, little brothers!!  My brothers and I had the best mom ever.  I miss her so much.  We would laugh a lot.  We liked a lot of the same movies and TV shows.  When I was in the hospital with my bloodclot, mom read all of Harry Potter and the Sorcerers Stone and began Anne of Green Gables.  I had a roommate.  She was ,a bit older than my mom and she was discharged before me.  She had to stop and ask mom what the names of the books were because she needs to go and get them.  She really enjoyed listening to mom read. I was not surprised.

It just seems to me that parts of my soul are so raw and can't heal.

L

ooo okko

Once Time is Gone, You Can’t Get It Back

 The last ten months of my mother’s life, I so often heard that I needed to place my mother in respite care and go on a vacation or put her in a home.  The more I was told to place her, the more I refused.  As for respite care, I knew that the time was coming when I would have plenty of time to have a break from taking care of my mother.  Were there times I got frustrated?  Oh yes, both with myself and with mom, mostly with myself as sometimes I could not switch it up fast enough.  I do have some regrets from when I was taking care of my mother, all of them are about how I could have handled some situations differently.  Having mom go with me all the time really wasn’t new.  It was nothing for either of us to ask the other if they wanted to go wherever wanted to come with whoever was going so when it got to the time that Mom couldn’t be alone.  I generally enjoyed Mom’s company.  We liked a lot of the same things.  It was impossible to get some people to understand that.

I so miss my mom.  It so nice for people to say, you should take a week off and she won’t know the difference.  Really?  It isn’t about trying to make memories for my mother to remember, she couldn’t, however, that didn’t mean that she couldn’t be happy.  It was about the moment.  All day long, it was about mom and moments.  I would tell mom how much I loved her, I would ask her did I tell you how much I love you today, where’s that pretty momma smile, things like that.  I needed for her to know she was so loved.  I took her out to eat, even when I needed to help her eat.  Yes, I got some looks, I am sure I may have gotten comments, I am partially deaf so I really didn’t hear too many.  I didn’t care.  I was focused on my mother.  I read to her.  We listened to the music she loved.  Did I have days where I had bad migraines and where my fibromyalgia was horrible?  Of course, we dealt with it.  Sometimes, when I needed a nap because I was so exhausted or my migraine was horrible, she would watch TV or she would take a nap in her room while I napped.  If it was a super bad day, one where I couldn’t do anything, I was lucky enough to have friends to come and take care of mom while I rest.

Best Professor Ever ar Wayne State!!!!

  I had to take two accounting classes for my major when I was working towards my Bachelor’s Degree.  Accounting I, I had a good friend in the class with me.  I was rather glad of that.  We rode to school together several times a week as it saved on gas and on wear and tear of our vehicles.  We alternated weeks.  When it was my week, Dan still drove, he just drove my car.  It worked out well.

The way our Accounting I Professor taught the class did not mark sense to me.  It seemed so backwards to me.  At the end of the class, she would assigned the next class homework, then, at the beginning of the next class she would collect the homework before she would explain how it was supposed to be done.  It never mattered how many times I read the chapter or section we needed to read to do our homework, it did NOT stick in my brain at all.  I was very annoyed by that.  Naturally, now I know I have ADHD so it makes sense to me know why I couldn’t understand what to me was backwards learning processing.  So, needless to say, I did not get a great grade in that class.  I didn’t probably should have retaken it.  I just didn’t want to.  

The next semester, I was in Accounting II.  This was called Managerial Accounting.  At the end of the first class, as usual, I waited until most everyone was finished speaking with the professor before I went to speak with her.  For every class I took at WSU, if the class was in a big auditorium type classroom, I would always ask if it was okay for me to record the lectures as I most likely would have difficulty hearing in the b8g hall.  Only once did I actually come across a professor who refused to let me.  He commented that if I was that deaf I should attempt a school for the deaf.  That was about the one of a handful of classes I was allowed to drop and Mom was not upset by it.  Yes, I did pay a significant amount if the tuition myself with my own money earned from jobs, however, she was the holder of said money, which was my choice as I knew at that stage in my life I could not guarantee that it would not be spent foolishly.  

My Accounting II Professor was so awesome.  When I was speaking with her about the problems I had with Accounting I.  The Professor noticed that I was not dressed similar to the rest of the class.  Most business majors at that upper classmen status where suits to school or some form of business attire. I could not.  First, I really didn’t own any business attire and two, even if I did, I did not have time to change from school to lessons or classes after I was finished with my WSU classes.  The Professor asked me what my major was and I said, Music Business.  She said that explains a lot.  She then asked if I go straight to a dance class from school.  I said yes.  I both teach and take dance classes right after I leave school.  She smiled.  The Professor told me the bun on the top of my head definitely gave me away as she sees that bun about twice a week when her girls go to ballet.  The Professor did make me promise not to burn the book before the end of the semester.  Naturally, I promised.  I wouldn’t burn my book anyway.

It was really neat that semester because the Professor came to a couple recitals that I participated in and to the choir concert where she sat with my mom.  The hardest thing in the class was getting used to ignoring the stares I got from some of the other girls in the class.  It took about three weeks for me to be able to ignore them completely.  The other girls in the class did not approve of me so much because I did not wear a suite or business attire.  There were about three who were the worst.  I sat near the front row as it really made a difference in whether I could hear or not, and sometimes the Professor would say something to me about singing or dancing or piano just to irritate those three girls.  She was a really nice person.

You never know who you will meet along your journey, do you??

Justice that I will never see in this Life

 I love the TV show Law and Order: Special Victims Unit.  It is more than just the well written stories and how great the acting is, it is how in the end, the truth wins and the victims get justice, something I never will.  In our state the statute of limitations ran out years ago.  It is too late for me, not for them.  It is really satisfying when they do get justice.  Do I wish I still could?  I don't know, maybe?  I don't know if I could get on the stand and testify. I was so young when it began.  Over the years there were multiple abusers, so I don't know.  I don't know exactly how old I was when the abuse began, or the grooming started first.  It was anywhere between 2-4 years old.  It did end when I was 12 years old.  About 10 or so years ago, I had decided that I should not be embarrassed about this.  I didn't do anything wrong. I was so small. I was a toddler at the earliest and a preschooler at the oldest when it began.  I don't remember as much as I used to. I am glad about that.  I know at least two of the abusers have died and possibly a 3rd one. Can you just imagine standing before God explaining this?  I don't think there is anyway to rationally explain any type of abuse to anyone or any animal, especially when it is your judgement day. I cannot fathom that.

I have been rather lucky in friendships.  Kathy has only ever been supportive as well as a friend from high school, Tonya and another from high school, Jennie.  Kathy now knows everything I can remember.  She is about the only one who does.  My mother did not know much about what happened to me.  I told her very little because she had gotten so upset that I never told her and apparently she had asked me questions???  Depending on when she asked me those questions depends on if I even understood what she was asking me.  I mean, this was the mom of mine who basically handed my a medical book opened to the page about periods and said you need to read this.  Here are some pads you will need.  Thankfully, in 5th grade after school, there was a couple hours a few days in a row where we learned all about the changes our bodies were about to go through.  Girls and boys were separated for this.  She also never had to give any type of sex talk either as our church did that one.  I think we were in 7th grade maybe?? Not sure.  I think the biggest thing my mother said to me was if you get pregnant don't come home.  I know, seriously? Umm?  I was not the only one of my friends who got told that.  Like, whatever.  Especially, now that I know I can't have children.  

I do hope someday the statute of limitations will extend to more years than it is now.  It may not help me, it could help someone else.

3 years old - Nursery School --- Santa Picture: 2 1/2 years old

5 years old - Kindergarten

Intro to Teaching at 18 Years Old

 I was 18 and a freshman in college when I began teaching private lessons.  When I went in August to sign up for my dance classes, my dance teacher handed me my teaching schedule.  I was pretty surprised as I didn't really know I was going to begin teaching.  The next week, I started.

At the end of October/early November, my mother asked me if I liked teaching.  I answered that not really, I have no idea what I am doing.  Mom asked to see my lesson plan.  I asked her what is a lesson plan?  She was very surprised that I had no idea what a lesson plan was.  That weekend, mom drew up some lesson plans to get me through to Christmas Break.

During Christmas Break I learned how to create lesson plans.  She taught me how to pace lessons. We did some role playing so I could get the pacing down pat.  Several months later, I was asked again how I liked teaching and I had a different answer.  I loved teaching.

I am so thankful that I did start teaching because when I got sick, all the plans I had made definitely blew up in smoke and I ended up needing a backup plan. Who knew what a great thing the back up plan was?

I have the best job in the entire world.  I do really miss teaching full-time.  I am grateful that I can teach some.  This week was a good week!!!  I have two new students!!  I really hope it works out very well!

What Is More Important?

 I just saw one of my favorite Facebook videos.  It was about what is more important, spending time with someone or buying that someone everything they ever wanted?  For me?  Time.  Little things matter so much more than buying me everything I want.  Coming along with me when I need to run a few errands, or going to a movie, playing a game.  

The person I spent a lot of time with was my mom.  I didn't care too much about gifts or expensive things from her.  I have saved several cards my mom gave me.  Those cards mean a lot to me.  

I worked in the afternoon and early evenings so I really could look only do my errands on the weekends.  Saturdays I generally finished teaching at about 3pm so I would get home around 3:30pm.  Most of the time after I got home, if I needed to go out for any reason, generally I would ask her if she wanted to go with me.  She and I would laugh so much when we would be out. When I had the music store about three months in, I asked mom if she could come with me to help with a few projects I wanted to get done and I knew she would do an excellent job.  She was in the mid stages of Alzheimer's, however, she still do a lot of stuff.  Mom really enjoyed coming with me.  She loves when the students would arrive for their music lessons.  She would ask each student how their lesson go and the students loved telling her all about their lessons.  When I began teaching at home, mom liked to go into the living room when it was time for a lesson.  

I was my mother's caregiver.  I was lucky enough to be able to keep her here at home until the last 10 days when she was on the Hospice Floor at the hospital.  I do have a few regrets on how I I reacted to a few situations, other than that, I am thankful for the time I had with her.  I was told a lot to put her in a home and/or I need some time away, she can go to respite care.  The more I was told to do these things, the more I dug my heals in.  I knew we had limited time with her, I didn't want to miss any time with her.

So time or everything you ever wanted?  Time.  Hands down!  Time!

My Favorite Picture of my Mom

Being a Burden

 For years I have felt like I am a burden.  I have never really been healthy.  I was born with tummy problems and then, well everything that comes with fibromyalgia plus several other things.  If you averaged out the amount of days I missed of school from kindergarten to senior year, it would come to about missing one day every single week.  

My older brother used to "joke" how when he couldn't find me, I must be taking a nap.  I never thought it was funny.  For some reason, it has always kind of seemed to annoy him how much I sleep.  Until I was actually officially diagnosed, it was difficult to get others in my family to understand there realize that I had something wrong with me, health-wise.   

I was 25 when I got sick.  My mother was a big part in helping me get better after the first flare that was absolutely horrific and I ended up needing to rest a lot.  Unfortunately, this was not the best choice at that time.  My mother helped me by stretching my arms and legs.  When we first started the new stretches, mom did not want me to do any stretches on my own, only with her.  We continued and eventually got a bit better.   I know there are people who disagree with how my mother handled my first huge flare, it is okay.  Those people weren't there.  They don't understand what we were working with or rather what we weren't working with: a diagnosis. It was somewhat easier when we did get the diagnosis.  It was January 2004.  11 years we waited to get an official diagnosis.  After we got the diagnosis, we started researching all about fibromyalgia.  We learned a lot and the journey has been interesting.  

Even with all her support, I still felt like a burden at times.  I haven't really figured out how not to feel like this.  

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.