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