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