Monday, August 17, 2015

Summer is almost over!!!!!

I am so glad that summer is almost over.  I don't do well in extreme heat, like today or the extreme cold.  Fall and spring are much better for me, especially fall.  I sleep better in cooler, not cold, temperatures.  Last night I had the fan on all night long as it was so hot in my room.  It really hasn't been too bad without a/c.  I really can't complain.  This summer has been nice without too many days too hot.  Today just happens to be one of them.  I am cooler right now with the lovely fan directly in front of me.  I will move it into the living room when I teach this afternoon.

Little man and I have had a good afternoon so far.  He and I went to a store and he got a new toy.  He is very excited about it.  Currently, he is playing on it downstairs.  Little Man is one thrilled boy.  I love that he is thrilled with the toy.

Miss Missy and I have been reading Harry Potter together.  She has been putting this off for months.  I kept telling her she would like it but she kept ignoring me.  Well, one day last week, I pulled out my first book and started reading out loud to her.  She went and got her braille copy and followed along.  She is now on the 3rd part of the braille copy of the first book.  Miss Missy loves the Harry Potter book!  I am one thrilled girl about that!  I knew she would if she would just give it a chance.  She just had to give it a chance.

I have been waking up earlier lately.  I don't know why.  It is kind of weird.  About an hour to and hour and a half earlier.  Very, very, very weird.  I have no reason why either.  I have been going to bed about the same time.  Perhaps because it gets warmer in my room earlier?  I don't know.  Miss Missy is glad that I am up earlier no matter the reason.  Of course, this often means I need a nap in the afternoon.  I have no time for one today.  I have lessons right during nap time.  I will be busy so that is okay.  I think I take more naps when I don't have as much too do.

I am rather achy today.  It is because of the weather.  That much I know.  It is suppose to cool off a bit tonight so it should be better then.  I will be happy about that.  My right elbow has been pretty sore lately.  Right at the trigger spot.  It hurts on and off and has for months now.  Sometimes, it hurts so much I can't even lift stuff with that arm and it is my right arm.  I am right handed.  Naturally, when I went to the arthritis doctor, it didn't hurt much that day so she didn't see it in action.

Well, I am going to read for a bit.

Sunday, July 26, 2015

Hot Summer Days

It has been the typical hot July days here now.  I expected them eventually and they have finally arrived.  Today it was 90 degrees out but I was cool and comfy inside with the windows shut to keep the heat out and the fan on me!  Nice and comfy!  Peony has been comfy too!  Today was a mostly Peony and me day.  I love these days.  Also, ABC family has a Harry Potter marathon on so that is what I am watching.  I started with number 6 as I didn't know the marathon was on until then.  Definitely a good way to spend the afternoon and evening!

Earlier, my precious princess pup and I went for a bit of a drive.  It was nice and relaxing.  We drove for about an hour.  I just wanted to get out of the house for a bit so we went.  Peony loves car rides, fortunately for me.  We enjoyed ourselves immensely, being together.  I came home and did the dishes right after that.  I was on my own for dinner so it was a Panera dinner for me.  I love their Greek salads.  I always get it with chicken.

I have a busy week coming up so I am very glad about that.  I will be meeting 2 friends on 2 different days too.  Cathy and her daughter for dinner and Mollie and her sons for lunch.  I am excited about that.  It should be rather fun.  I believe so that is for sure.  I haven't seen Cathy and Ally since May nor have I seen Mollie since early June.  Both are overdue for a visit.  I try to visit as much as possible.  I will see an old friend, Sue next week.  I haven't seen her in about 16 years so that will be good.

Peony is in the living room barking at something outside.  She does this often.  It is quite cute when she does this.  I find it rather amusing.  She will run back and forth from my room to the living room and then do it again.  She is back by my side for a few seconds again.

My cousin, Wilbert passed away yesterday.  He had dementia.  He didn't know who he was anymore.  Wilbert had pneumonia.  He and Momma were first cousins.  Once they were very close, then they drifted apart, and then they met up again.  I was with Momma when she met up again with them.  I have been close to his wife, Tilley every since.  I have mixed emotions about his passing.  He was an abusive man in his adult life, which is why Momma drifted away.  When I knew him, he was no longer physically abusive.  I mourn the man I knew, the non abusive one, the one who was kind to me, the one he was before he forgot who he was.  That is the man I mourn.  As for the family, I know they are conflicted with who they mourn.  Do the remember the good times, or the bad?  I know there were some good times, but I also know the bad so out weigh the good.  Abuse ran so much in our family.  For my particular nuclear family, it stopped with Momma.  She never abused us.  She was abused as a child so she knew what it was like and stopped it with her.  For her siblings, I am not sure.  I don't think my aunt was physically abusive but she was verbally.  I don't know about my two uncles for sure, but I suspect my one uncle was based on what one of my cousin's has said in the past.  As for the other, I don't know at all.  Abuse can be such a bad circle for families.  I am glad it stopped with Momma.  Of course, we didn't know anything about my grandfather's abuse while he was alive.  Only after he died did we learn about what he did to her and what a monster he truly was to her and her siblings.  One time, he hit her in the face so hard she went flying backwards in the chair and landed on the ground.  I cried when I heard that.  that was just one story that I heard.  I heard so many.  Momma didn't like to talk about so my aunt and uncles told us.  The grief of my cousins will be a different journey than mine was of my mother.  I still walk that journey.  Some days it is okay, others not so good.

I hope your week is going to be good!!!  I am looking forward to my lessons and my visits with friends.

Sunday, July 19, 2015

Fibro and the Heat

It is very hot for us right now.  Not like it is in the south, but hot enough.  I ache more in the super cold and the heat so right now, I am aching a lot more than usual.  It happens every year.  I feel it more this year because our a/c has died and needs to be replaced and like so many I know, we just don't have the money to replace it.  Or rather, if I replace it and the furnace goes, we are in deep trouble so the best choice was to wait and see what happens with the furnace.  So far, until yesterday, it actually hadn't been so bad.  Low 80s, high 70s, not much humidity, it was really nice.  Then yesterday, yup, summer is here!  We are heading for lower temps again this week, so that will be good.  I have several tops that are very light and I have a trusty good fan so does most everyone in the house so we are all set.  My fan has been brought down to the kitchen right now so it is blowing on those of us sitting at the dining room table.  It works.  It was quite comfy, temp wise, although very achy, with the fan blowing in my room last night.  I hope it is again tonight.  We have an attic fan too that helps pull the hot air out upstairs.  I am afraid I have gotten quite spoiled with this a/c we have had for the last 20 years.  We didn't have a/c in the house growing up.  It was put in in 1995.  I was a grateful girl then.  It was right before I started really getting sick.

Summer has been okay so far.  I have a few students who have stopped for the summer, which is always sad as I miss them.  Most of them stay.  I don't have a lot of students as I am just not healthy enough to teach that many.  I do have 2 new ones starting tomorrow so that is good.  It helps balance out the ones that quit.  I have the books we need already.  Acer and I picked them up on Thursday.  I like taking him with me because he is good company and he likes going to music stores.

I hope summer is good for you so far.

Saturday, June 20, 2015

A Life of Hope

It is weird in a way because with all the health issues I have, I am hopeful that someday there will be a cure for this.  That someday we will all be free of pain and free of all the other symptoms we have.  I just know that we will.  When, well, who knows?

I find it easier to live being hopeful despite my high anxiety because when I focus on hope and living well, I am in less pain and less fatigue.  I also have a beautiful way to lessen my anxiety by hugging and cuddling Peony, our gorgeous doggie.  I love her so much.  Between Maisy and Peony I have really learned how dogs or pets in general, can really lower anxiety and provide so much love.  I miss Maisy, I loved her so much.  I am thankful for all that she taught me.  I believe that she is in Heaven playing away everyday with many other furry friends of ours.  I also believe she has met my mother, who was my biggest support when I became ill.  She stood by me and really believed me when no one else did.  I could tell her exactly how I felt and knew that she would believe me.  I miss her an awful lot too.

I have had a good weekend so far.  Last night, I went to spend the night at my friend's house to watch her children.  I simply adore her children.  They are very good kids and generally get along okay.  I do have rules that they have to be nice to each other but generally they are good.  The oldest, Angus (15) and I ended up staying up until 1:45 am watching a movie.  Oh my, I am so tired from it.  I did enjoy the movie a lot.  We also watched the first Hobbit movie, which I have seen before, once but it was nice to see again.  I really enjoyed watching the movies with Angus.  Rose (9) and Hayden (10) ended up going to bed late because I didn't realize what time it was.  Tasha (13) was upset because she went to bed on time and didn't get to stay up later.  I said it was my fault they went to bed late, not them so too bad.  She was not happy about that but she did go to bed.  I love these kids.  I had to leave earlier than I would have wanted to because I had a lesson at 2 and it was over an hour drive home.  I hope to see them again rather shortly.

The kids are coming this weekend!  I am so excited!!!!  How exciting!  It will be great!  I wonder if I will end up with 5 again meaning the neighbor girl across the street, Bella, (Rose's friend) will come and spend a night too?  It doesn't matter.  Either way works.

Well, dinner will be done soon.  Peony is sitting under my chair and I love rubbing my foot against her fur!

Tuesday, May 26, 2015

High Anxiety for No Reason

Some days, for absolutely no reason, my anxiety kicks into high gear.  Today would be one of them.  i don't know why, it just did.  My stomach is in knots and I am feeling very very shaky.  I have 3 lessons like normal so that isn't it.  We had a good weekend, so I have no idea what is up with me.  Sometimes, it just happens this way.  There isn't anything I can do about, not really.  I try to relax, but it doesn't happen.  Maybe by tonight it will be better.

I would have to say, outside of the pain, anxiety is the 2nd thing I hate most about fibro because I can't control it.  I can't go to bed early or take a nap and improve it that way.  I do take medicine and that helps most of the time except for days like this.

So far, my 4:30 has seemed to have forgotten about her piano lesson.  Sad face.  I will call her mom for a make up lesson later this evening.  She does do make up lessons so that is good.  I really like this student a lot.  She is such a sweet girl and a good pianist.

Peony is lying on the floor next to me.  She is such a comfort.  Oh, something cute she did yesterday.  I decided to go to Starbucks and get a small Vanilla Bean drink.  Well, I learned that Peony looooves whip cream.  To the point that she actually had some of my drink.  Literally.  I put my drink with my straw in my cup holder and when I went to take a drink, my straw was gone and so was my whipped cream.  Yeah, she took the straw and did who knows what and had my whipped cream.  One drink down the tubes.  Never will I go to Starbucks with the little Peony in the car with me again.  It was funny though although I really wanted that drink!

Sunday, May 17, 2015

Fibro Awareness Day!

May 12 is Fibromyalgia Awareness Day.  Every year or most every year, our Michigan group puts on a conference.  I wasn't able to attend this year as I had teaching commitments that really couldn't get out of.  I am sure it went wonderfully and people learned an awful lot.  I am meeting one of my friends who went and was on the staff so I will be hearing about the latest updates so that is good.

My journey is so familiar to everyone I know who has fibro.  I actually had my first flare up at 17 years old.  I stayed home from school for about 6 weeks.  The school threatened to make me take my junior year over.  Momma argued with them and won.  I am not surprised.  They just couldn't out argue the major.  (My momma was a major in the Canadian Army)  Trust me, no one messed with the major, especially us kids, well me.  My brothers messed with her a lot.  Anyways, I digress.  6 weeks later, I went back to school to take exams and then was summer vacation.  I was in marching band, choir, and on the Pom Pom squad at the time.  I was also a dancer taking dance classes.  I loved to dance but when the flair hit, everything hurt.

After that, I was fine for a couple of years except for headaches that happened quite often and the occasional unexplained pain.  I didn't really start developing bad headaches until about 21 years old when I had my first long term headache.  I was in college at Wayne State University majoring in music.  I was still dancing at my dance studio, both teaching and taking classes.  Overall, I danced about 5 to 6 hours a night during the week and about 6 to 7 hours on Saturday while working at Arby's on Sunday. I had a bad headache for 6 months straight.  i missed classes when it was super bad, I missed dance classes, I missed work, it was awful.  Mom took me to a few doctors, they didn't say much.  Mom finally stopped because there wasn't anything they gave me that worked.  Nothing stopped the headache until one day it was gone.  We were like, that is really weird, but okay, it is gone, let's go with that so we did.  Back to classes in school, back to dance, back to work.  No problem for a few more years until I graduated from WSU.  Three months after graduating, the unexplained pain was back, the headache was back.  I was only teaching at this point.  The dance studio had closed and I was looking for a new one until the pain hit.  We decided to look in the fall since this was summer and I was in so much pain.  We didn't know what to do!  Mom took me back to doctor after doctor.  My doctor didn't know what to do.  The only doctor that would have was hers, only we didn't think to take me there.  Hindsight is so 20/20!  After the last doctor told my mother I was emotional disturbed and only wanted her attention (she was furious at this) we stopped going and figured we were on our own.  Test and test were negative except for the initial arthritis test.  Further arthritis tests were negative.  Mom said I should rest unless I am teaching, so I did.  I rested and rested and rested.  I would get up in the morning with her (well, to me the middle of the night since she got up at 5 am) and got showered and dressed.  I then ate breakfast and went back to bed.  I got up for lunch and went back to bed.  The joke in the house was if I was home and you didn't know where I was I must be in bed.  It wasn't funny to Momma and me.  After a few months of resting and getting worse momma said this isn't working.  So she tried something new.  We tried exercising.  She would still have me get up early but before I got out of bed she would rub my legs and do leg lifts with them.  Also, I had gained weight because of stopping dance.  You can't go from dancing as much as I did to practically bedridden and not gain weight.  It is impossible so add the extra pounds on top of the pain.  then she would help me up and move my arms.  this helped.  I still had pain, but it was beginning to be manageable.  I could do enough where I could work at home with another job and teach in the afternoon and evening.

We did this for several years until I got vasculitis.  I got vasculitis in March of 2003.  It starts off like you think you are getting a cold.  You get a runny nose.  One like you have never had.  It constantly and I mean constantly runs.  I literally woke every couple hours to blow my nose.  Then the headache starts, then the rash.  The rash is where the blood vessels are inflamed and pushing up against your skin.  It is extremely painful.  Add this to fibro and well yeah, you get the picture.  It also affects the palms of your hands and the soles of your feet.  It is hard to walk because the soles of your feet hurt to put pressure on.  Closing your hands hurt because of the pain your palms have.  For some reason, I will never know, I was lucky, so lucky that I will forever be so grateful, the vasculitis left my body.  It usually doesn't.  It takes about 3 to 4 months to flare up and down and then it starts all over again.  For me, I just had one flare up and it went.  I am so thankful about that.

What it did leave me with was a worse case of fibro.  Because I was having more pain issues and we weren't sure what it was, I didn't think it was the vasculitis but I didn't know.  I chose to go to the vasculitis center at the Cleveland Clinic.  Mom and I drove there and we stayed overnight because we had an early appointment.  They were awesome.  I had CT scans and X-Rays done.  When I was with the doctor and the physician assistant, they answered all my questions.  We were with them for about 45 minutes.  The said they believed that the vasculitis was gone.  Finally, I asked, then what is it?  I was stiff in the morning, I ached all over, all day, and so on.  they asked questions and did the trigger point test.  (I didn't know that is what it was)  I jumped at pretty much all of them.  Then they felt my face.  Whoa, that hurt so much.  That was when I was diagnosed with the Fibro.  The doctor sent a letter to my doctor (who was also momma's doctor, you know the one from years ago) and he asked why did I not ever tell him.  I told him what had happened.  He said we couldn't have been dealing with this years ago instead of just now.  Yup, I felt like an idiot.  But we had a diagnosed and that was what was important.  Finally, a name to know what was wrong with me.  I finally felt like I wasn't faking it even though I never had.  Mom was relieved, I was relieved.  My brothers were like, you mean there really is something wrong with her?  Wow, who knew?  Mom said, I did.  They never bothered me about that again.  It is such a relief when you get a diagnosed.  I felt like I had something to work with.  I knew there would be info about it because I had a good friend who has it also.  I went to a conference.  I bought books.  I read whatever I could about it.  I just kept reading and reading until I had a plan to follow.

Fibro Day is so important to let people know about this so they know they are not crazy and losing their minds.  That there really is something wrong with them and what they can do to help themselves.  It is pretty well known now compared to 12 years ago when I was diagnosed and definitely from when one of my good friends was diagnosed.  So let's celebrate the day with lots of info for people!

Sunday, May 3, 2015

Sunday - a day of rest????

It has been a busy day so far.  I had a meeting with the music association I belong too.  It wasn't too long and it went well.  Unlike some of the old ones that would last for hours and had much gossip (which I hate!) in them, these are efficiently done.  We go through the minutes and boom, we are finished.  I like that in a meeting.  It was about the competition in February.  We used to have them in March but now they are in February.  I prefer them in March but I can't remember why they are in February now.

I came home and got Peony out of her crate so we could go and get gas.  It was needed.  She was so cute and pretty well behaved on the trip.  I drive a bit extra to a place that pumps the gas for me.  It is about 5 or so miles away instead of just the one right down the road, but since I can't stand the smell of gas, it makes me nauseous, I go the extra miles to have them pump the gas for me.  Peony loves car rides so she doesn't mind the extra miles either.

I worked on some music when I came home and now, on to my post.

My head is a bit more sore than earlier today now.  It is so nice out, with the temperature just beautiful and the sun shining.  The clouds are puffy white ones and they look wonderful when I see them.  However, along comes my headache stuff.  I get so discouraged with them at times.  I really do because they never seem to end.  The daily one I have completely given up hope on the doctor ever being able to stop it or break it.  The bad ones are better so I have hope that maybe they will one day not be so bad and be able to have more days in between without bad headaches.  I sure hope so.

Well, I am going to lie down for a while.  My head is just not happy with me at this point.