Friday, August 28, 2026

 It looks so beautiful outside.  The sun is shining and the trees rustling their leaves in the breeze.  Naturally, these trees are growing right where they should not be, however, I love the trees.  I really do.

Wednesday was an awful day for me.  Simply horrible.  For the last several weeks, I have had major problems with sleep.  I can't sleep until dawn many nights.  I do not know why.  I am not worried or anxious about the procedure as it will be very similar to the one I have already had.  I have a general idea of what to expect, of which I am very thankful for.

So, back to Wednesday morning.  I barely slept as had been my usual for a while.  C had a doctor appointment first.  That went well and without any problems.  Then came the drive to our neurologist's office.  That was when the issue began.  I was fine at first until I wasn't.  I fell asleep for about a minute and i crashed my car.  We were okay physically, me, not so much emotionally.  The owner of the truck didn't even stop at all.  I guess he didn't have much damage to his vehicle.  There isn't a whole lot damaged to mine either.  It is more of I can't believing that I fell asleep while driving!!  This is terrible!!  After a few minutes, I drove us home.  I was extremely tired.  I fell asleep in my chair then went up to my room to go to bed.

Yesterday was a bit better.  I stayed upstairs mostly.  C brought up the laundry she was working on.  I folded the laundry and put it away.  My room is looking better and better every week.

2 days until my ablation of the kidney.  I wonder how long it will take to have the extra nausea, fatigue, and pain to go away?  Soon, I hope.

August 24, 2026

C has been home for a whole week now!  I am so glad she is.  I think all of us are.  Tonight, right before B went to bed, I asked him about getting shelves instead not the long dresser we use as a side board.  He looked and asked me, what is the problem I want solved.  I said I really do not like how the center of the dining room table does not line up underneath the chandelier.  B said okay.  What if you and C switch places at the table then we can move the table to where you would like it.  We both said that will work. C has done a lot of work this week, let me tell you.  The corner of doom next to where I sat is now gone.  The stove and the sink safe wonderfully clean.  I have tried to keep up with the filling of the dishwasher and starting the dishwasher. C has made some awfully yummy and healthy meals too.

My goal between now and a, hopefully, full recovery is to teach about 4-5 lessons a week.  It will really help my brain stay much calmer and not go crazy like it can.

7 Days to Ablation!!

August 22, 2026

Today was long.  I did have one lesson, so that was good.  Sleep is so elusive for me these days.  I can't sleep.  My brain will not stop.  Much of my brain knows that after the Ablation the tumor will die and be absorbed by tissue around where it was.  The other part of my brain is so anxious and absolutely terrified about how will my body handle one mure thing to recover from.  

A couple of nights ago, I was texting with Kathy about our dream Walt Disney World Vacation.  Kathy said 3 weeks in a deluxe hotel so that we could enjoy the parks and the resort too.  I wanted 9 character Dining Meals because I love them.  I wanted to be able to celebrate my mother there on October 18th.  That was the day she passed away.  I also thought she would enjoy their Not So Scary Halloween and I really Enjoyed the Mickey and Minnie Christmas Party.. 

By morning I thought I would call and see just how much our fantasy Disney Vacation. I received the preliminary cost.

tomorrow, I plan to work on the music library.  Currently, I am working on the vocal library.  Mostly, at this time I am recreating the library more so than building a brand new one.  I also need to file all the books and sheet music with the numbers instead of the type.  It will be so nice again to know what I don't have.  I am using the same numbers that have been used before.  The orgiinal ones that my mother had assigned them.  

A New Diagnose

 About a year ago, when I had yearly scan of my kidneys, A new mass showed up.  The first CT scan results were inconclusive.  That was about October 2025. In March, I had another CT scan.  It did come back negative, except for one test.  I had a biopsy and it came back positive.  I have Renal Cell Carcinoma.  This diagnose did answer a few questions on some symptoms i have been having.  I have pain my side a lot of the time, i am so much more exhausted than I was, and the extreme nausea.  I am nauseated 24/7/365, but this is worse.  

I will have a procedure on the 31st that will freeze the mass and that will kill it. I had another choice, surgery.what comes after, I have no idea. I will find out after.

My anxiety has moments of being almost calm, well as calm as I can get.  My cousin K, is coming with me to all my appointments.  That was a huge relief.  She took notes at the appointment with the doctor who will be doing the procedure.  I am falling asleep right now.as I write this, so I am ending this and going to bed. 

Here is a fun Peony picture!!

Teaching

 From the time I was young, I knew I always wanted to be a musician. I never ever waivered on that.  I was a born musician.  I think I sang long before I spoke.  I learned how to dance and then added acting classes.  I was working on a career in Broadway.  That had been my goal since I was about 8 years old.  I had been put in theatre class beginning when I was six.  I recall my parents speaking about this as if theatre class would channel my being dramatic.  It didn't.  It made it worse.  I learned how to cry on cue.  I only got away with crying on cue to get one of my brothers in trouble once.  The second time, I got in trouble.  I did deserve the time out.  

I have no idea how many students I have taught over 38 years.  Too many to count.  I have been lucky enough to have a career that I could support myself and I was proud of my work and what I did.  My mother was so thrilled and proud that I was a teacher.  She loved assisting me at competitions and rehearsals.  She really did.  Mom was always so helpful.  Mom and I were very close.  She came to most of the music competitions, there was only one that she didn't go too and oh my!  I heard about it the entire weekend.  All of the teachers that knew my mother asked where was mom?  Why did you leave her at home?  Let me just tell you never again.  I brought mom with me after that.  Mom laughed a lot when I told her all about it.  

I love teaching.  I love sharing the thing I love most in the world with people.  I do not know how to market myself in this new world of media.  I cannot work full time.  I haven't been about to for 19 years now.  I would like several new students.  I do like teaching here.  It is enough.

Starting Small with Old Hobbies I Love

 I learned to sew when I was in 3rd grade.  I was 8 years old and home because I was very sick, so was my younger brother.  We both missed about 2-3 weeks of school, I am not sure really how much as it was so long ago.  My mom made all of my clothes for school and church up until 4th grade.  That was when I had to actually go to the store and buy my school clothes.  The meltdown is a whole other story.  Because my mother had us rest in the morning and in the afternoon, we felt pretty good after the first few days.  Naturally the medicines helped too.  It was very common to see my mother sewing during the day.  I kept asking her questions of why are you doing this and that.  What does that do?  I had shown interest in sewing before, however, not as much as then.  Mom brought up my little table and chair.  Thus began my love of sewing.  

About 6 or 7 years ago, I had finally admitted I could no longer so because my hands simply ached too much.  They also shake a lot.  I decided to give a friend my sewing stuff and whatever material I had left.  I wanted someone to enjoy my stuff.  My friend, Pattie came and got my machines and all my sewing things.  I had lunch shortly after that with her and her daughter.  Pattie had made me a quilt.  It is so beautiful.  I love it.  I was very very surprised too.  I did not expect that.  The quilt is music themed.  

By the time I was in junior high, I could sew my own clothes with very little supervision.  Mom and I still sewed together, it was our bonding thing, I just didn't always need her help.  In 8th grade, the night before Halloween or the day the school was celebrating Halloween, I decided that I was going to make my Halloween costume after all.  I had picked out the pattern and the material plus all the notions a week before.  I had planned on making the costume for Halloween at school, but that week was awful.  8th grade was one of the worst years for me when it came to me being bullied.  It was cool to be as mean as you can to me.  There was a point system for what you did to me.  It was just insane.  There was one girl in my homeroom class that was the worst.  My homeroom teacher was never in the room and when I told him about it, he did nothing.  I went to the library as many days as I could.  My homeroom teacher was actually happy when I couldn't go to the library during homeroom.  He laughed and said things like you can't go to the library today.  I had friends, none stood up for me.  One ofter joined in if she was mad at me for some ridiculous reason.  She would get mad at us for the most insane reasons like not writing her a not during whatever hour we were in.  She expected a note from all of us every single hour no matter what.  I wrote all of my notes to her at night at my house so I would have them ready for the next day.

Anyways, I digress.  I began making my costume after school. I finished the costume about 11:30 that night.  No, my mother was not that happy that I was still up when she came home from work.  She did see the finished garment.  I had made a couple of whoopsies, nothing anyone who doesn't sew would really know.  Mom said I did a good job.

Nervously I put on my costume and went to school.  I tried to brace myself for mean comments and mean things.  I was not prepared for nice comments and impressed classmates.  All of my classmates recognized who I was in my costume: Laura Ingalls.  The TV show Little House On the Prairie was a favorite among many students.  I was asked all day where did I get my costume.  I said I made it.  I was also asked, did I make the bonnet also.  Yes, I did.

I made a lot of my church clothes in high school and I also made a lot of homecoming dresses for classmates and a lot of prom dresses for classmates and the dresses I needed for singing competitions and perfromances.

Recently I bought some Christmas Ornament Kits that you sew.  I am starting with those.  We shall see how my hand do.  They don't ache as much as they used to, I am hoping that means I can do some sewing.  I do miss it a lot.  The picture is of me in 3rd grade, the year I began learning to sew.  Mom made that outfit.  I absolutely loved it!

RSD, Rejection Sensitive Dysphoria

 One of the hardest parts of ADHD for me is RSD.  There are so many words I have been told as far as I can remember that still go through my head a lot of the time.  Some of the worse ones still haunt me:

    You are so selfish.  How can you be so selfish? Don't be so selfish.

I can't even say who said this to me the most.  I know my mother rarely said it.  Other family members said it often. I have such a horror of being selfish that at times I made myself as small as possible.  At school, I had a reputation of being a chatterbox.  At home, I was silent, depending on who was home.  The last time the three of us spoke to our father before he basically decided we no longer existed to him, was when we each we asked if we would move with him and his wife and stepdaughter to a farm in Texas.  We all said no.  I was 10.  We hadn't heard from him in months.  I explained why. I asked if we would visit mom, I don't remember his answer, I told him I don't like to be outside, the sun and heat make me sick, Andrew is allergic to the sun, I don't like to get dirty, and I don't think I can help with taking care of animals that stay outside.  I have no idea what my brothers told him.  I was just told that I was being so selfish by not going to live with my dad.  

It took until I was in my 50s to understand why his words felt like he told me I was the worst person in the world.  I couldn't tell him the biggest reason I didn't want to move.  He didn't pinky promise he would not ever leave me.  Mom did.

I have been working on getting some hacks so that the criticisms and mean commits do not keep going on and on in my head. Who knows? Maybe someday criticism won't bother me after the situation is over and done.  I can only hope. 

New Journey of Grief

Me and Tilley a few Years ago

On Thursday, April 16, 2026, my Aunt Tilley passed away.  I have yet to be able to process this.  In some ways it feels simply impossible and others like it has been almost a year.  At the end of last May, she moved to Nova Scotia with my cousin, Zachary.  I had spoken to her about 2 times since May. I tried to call her several times, however, she rarely had her phone on, which was pretty normal for her.  

She and I had so many laughs over the years.  We also liked a lot of similar things.  One Mother's Day shortly after my mother passed away, we went and saw a live event at the movie theatre at the local mall.  We saw the Ballet of "Romeo and Juliet".  I love dance so much.  I really do miss it too.  I danced for 9 years through out the end of high school and university.  I loved Ballet and Lyrical Jazz the best.  I met one of my closest friends in Ballet, Mollie.  We stood next to each other at the bar.  Okay, I will confess, we were also the two super serious dancers who would glare at anyone talking or not paying attention.  Eventually, we did ease up on the glares.  Ballet Class was also where I met one of the teachers that had such a positive influence on me as a teacher.  Her name was Debbie. Rarely, did she yell or tell someone something mean when they made a mistake.  She didn't make a big deal about it.  Debbie just quietly corrected the student.  

I don't remember what year it was, Mom and I went to Chatham for the Highland Games. We were standing at the grandstands watching a collection of Bands that were concluding the band competition, when we heard a booming voice say, hey, that is my cousin!  Mom looked at me and said I know that voice.  We moved away and down the stands came Wilbert and Tilley. I don't know if I had met them before or not.  Thus rekindled a family friendship that lasts even now.  I was very close to Tilley, I visited her often and called her at least once a week when she lived near her.  She lied about 45 minutes away from me.  

Maia, I am unsure what year

Her youngest daughter, Maia and I were also close.  I miss her an awful lot too.  She passed away from Inflammatory Breast Cancer.  

Lia

There are good things too that have come out of the family.  Maia had four children.  Her oldest and youngest daughters have families.  It was her youngest daughter who called to let me know about the passing.  There will be a celebration of her life, however, I will not be able to go.  I do not have an updated passport and it is a very long trip, with my physical limitations, the pain levels would be super high.  Maia's next older sister has a daughter who has 2 children.  We had a really good conversation.  Even with the social media that so many of us use, spare time is hard to find, especially for parents, it doesn't matter if a mother has another job outside of the home or not, being a parent means you wear many many hats.  This is not to say that people without children are not very busy,  I am saying this is a big reason why it is difficult for our family to get together these days.

Tilley would have been 94 on September 5, 2026. I loved hearing stories of when she was young and lived in several different small towns.  She got married when she was 18 and there were 12 people in attendance at the wedding.  She would say that all the time.  She had lived in many different places, with Halifax, Nova Scotia being one of her favorite.  She always wanted to go back there.  She did.  Last May. My prissiness did irritate her a lot.  She couldn't understand why did not like to go outside. She also said to my mother once that had we been visiting more when me and my brothers were young, I would have been forced to run around outside with her kids.  I said I didn't like to run around outside.  I liked playing with my dolls and my barbies. Tilley said to me, no you would have been running around probably with Maia.  Maia looked at her mom and said no, I would have been in here playing with her dolls and barbies right with her.  Tilley was so surprised.  Maia said I liked those toys too.  She said I would have wanted to be with my cousin in here. This was just one of the more comical things that were said.  Now Maia did say to me one day when we were I think in my backyard, it is just a little dirt, Heather.  You will be just fine. 

Tilley and Maia were a good help near the end of my mother's life.  my mother passed away 15 1/2 years ago.  

Tilley & Melody

Danielle & Melody

The World

 I was once told that I look at the world wrong and it doesn't work the way I think it does.  I was also told at the same time that I was a goody two shoes, this was because I choose to speak differently than some of my relatives.  I work with children and they tend to repeat what you say so I think about what I say knowing they will repeat it.

I have always looked at things differently.  I feel things differently than most people I know.  My brain never stops.  In the background is always music playing, it is the soundtrack to the never ending racing thoughts.  

I have always thought in music.  I don't remember when I haven't. I eat, sleep, and breathe music.  

I could, maybe I still can, I don't know, look out a window and instead of seeing my daydreams in my head, I could see them in front of me.  It was like the frame of the window was the outside frame of a movie screen.  I told one of my friends once and she told me that was the weirdest thing she ever heard.  I never told anyone else again. 

It wasn't until several years ago I was tested for ADHD.  I did ask both my brothers if they thought I had ADHD.  They said no.  Unfortunately, both were not correct.  I do have ADHD, which does explain some of the things I do. Not everything, just some.

I can't explain how I look at the world differently, I don't think I do.  I do not think I am a goody two shoes.  I am just me.  My brain does think and work differently.  I don't know mind.  No one else should either.

I really miss my Mom tonight

For the last couple of months I have really missed my mother.  It has been just slightly over 15 years since I have hugged, spoke, kissed, or seen my Mother.  There is so much I want to tell her!  The biggest thing is the closure of not having my father in my life for most of my life.  There are so many reasons my mom was such a good mom, this is just another, after my parents were divorced, my mother made a decision to not say anything negative about our father or our stepmother.  She said we needed to have our own options without any influence from her.  That had to be so difficult as it was not an amicable divorce.  The amazing thing is, she never did say anything bad about either one even when us three were adults.  I asked Mom once if knowing what she knew at that moment, if she had that knowledge back then, would she still have married dad?  I have to say that I was speechless at her answer and I am rarely speechless.  Mom said YES, she would.  I asked, why?  He was awful!  Mom looked right at me and said I had you three.  If I never married your father, I wouldn’t have you three.  You and your brothers were and are the very best things that have ever happened to me.  You three mean everything to me.  Yup, I had no words for a few.  I did say that she wouldn’t have a chronically ill daughter that will always be sick and not get better.  She told me she wants me, it didn’t matter if I was sick.  I was her gal.  

Mom never made me feel like I was a burden.  When I was her caregiver, I really wanted her to be happy and know she was loved.  I have been told I did accomplish that goal.  I did tell her very often that I loved her. Mom sure kept that pinky promise she made me when I was very young. 

Next Sunday will be the first recital we have had in so very long.  I am looking forward to it because it has been such a long time. Q is singing 4 or 5 songs and I think playing her saxophone, G is playing 2 or 3 clarinet pieces, P is singing 3 songs, C is possibly singing 2, and I am unsure about the 2 or 3 others.  In  May, it will be a bigger recital because S will be able to be there and possibly 2 of my other students. It will also be the Senior Spotlight on Q as she will graduate high school.  I am hoping E and LaKedria will be able to come in person,  I am hoping also that my sister will be visiting at that time.  

It has been so cold these last few weeks.  With the windchill, we are talking way below zero.  I have just been aching and super exhausted from it.  I did end up in the hospital overnight a couple of weeks ago.  I woke up with the sharpest pains going up and down my legs from my knees to my feet.  It hurt to breathe and I had a horrible headache.  I called LaKedria and asked if the pains were normal for fibromyalgia.  She said not for me because of my blood disorder.  I was in so much pain I really didn’t know what was going on so she said to call A.  I did.  He spoke with her and somehow B came home to take me to the ER.  I had blood tests and a CT scan.  Pain meds and plans for the testing and stuff.  B and A stayed until the doctor spoke to B about the blood test results and the plan for another test to rule out a blood clot.  He said that the Ultrasound techs go home at 7pm so often they will let patients go home and then come back.  For me, he said I was way too tender, (when he was checking my lungs like normal, it hurt when the stethoscope touched my skin), and in too much pain to go home so he wanted me to go to observation.  B agreed that was a good plan so they both left.  I finally fell asleep and then I was moved into the observation floor.  I didn’t have a blood clot.  It was from the arthritis in my back that was causing the pain in my legs.  I have so much arthritis in my back that it causes this to happen when it feels like it.

I am much better with that now.  I now just want a bit of warmer weather and my momma.  That is all.

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.