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.

Wednesday, April 29, 2015

A better week!

The Earth Day Festival performance went well.  There were a few glitches here and there plus a few things that could have been better but overall I was pleased with how the kids did.  Bob did very well with his conducting for the first time and so did Acer, although he has conducted before.  My anxiety is back to normal now so I am glad about that!  It got very high and I had the worst time trying to sleep!  However, now it is over and we are on to the spring concert material.  Many students have picked out pieces.  It looks like the concert will be in late May or June.  I am fine with that so that is good.  As long as we have one, that is all that matters.

My headaches are getting out of control again.  The back of my head to the front of my head, at night, can be so painful.  Fortunately, it isn't every night like it used to be, but I think my super high anxiety brought them back out of control.  I hope that by this weekend they will be just like normal.  That is my hope anyway.

My sinus infection has finally gotten better!!  Yay!  It lasted about 3 weeks and for the first time in forever, (hey, isn't that a song?? tee he he) I was actually knocked out for 5 days with it.  I had to actually cancel 5 days of lessons!  It was unreal!  I am back to normal sinus wise and happy about that too.  Part of the problem was lightheadedness.  I was so lightheaded that I thought I was going to pass out if I sat up too long.  I am fine now.

Spring has FINALLY sprung here!  Yes, warmer weather!  Hoodie weather!  Short sleeve weather!  Almost summer dress weather.  I love how the flowers grow and the grass turns green!  Just the new growth that comes with spring.  We did have some snow this month but I hope that is over as Friday is May Day.  I appreciate flowers and gardens, I just don't like to work in them at all.  I do not have the knack of growing things like my mother had.  She could just smile at a flower and it would grow.

Well, dinner is now here so I better wrap this up!  Have a great day!

Monday, April 20, 2015

back to blogging and the anxiety filled week ahead

My desktop computer has died.  Yup, it breathed its last breath last month and well, needless to say I have been at my wits end with it.  Everything was up to date on it, pictures, my bank account, my music catalogue, and oh my.  Well, I have this beautiful little laptop that is one year older than the desktop and it still works.  That is what I am currently using.  I am dreading updating the catalogue though because it was up to date on the big one and not this one.  If only it would start up once more so I can copy the catalogue and pictures.  Alas, it won't.

Anyways, that was then, this is now.

My students are going to perform for the big Earth Day festival this weekend and my anxiety is rather high about it.  We have never done this before.  I am excited about it too, but nervous at the same time. We had the last rehearsal yesterday and things went okay.  Nothing spectacular but not horrible either.  Each knows what to work on so I feel that Sunday will go well, it's just that my anxiety is high.  I am working on trying to stay calm and I am doing okay with that so that is good.

Spring is finally here!!  We FINALLY seem to be done with snow.  I am so tired of snow and cold.  I got a sinus infection about a week and a half ago but it is almost gone so that is also good.  I was out for 5 days.  I just couldn't do anything but sleep, including teaching.  Yup, I was that bad.  I think I slept for 5 days straight.  We had rehearsal for one of the days and Bob pretty much ran it for me.  I just couldn't do it.  I couldn't.  I was so dizzy and foggy not to mention I felt horrible.  I am on the mend and boy am I glad about that!

So, other than the Earth Day festival, not to much going on around here.  Peony is doing well.  She is such good company when I have high anxiety.  She really is.  Peony is such a beautiful dog.  I love her so much.

I do hope you are enjoying your spring!!!

Tuesday, January 13, 2015

bad headache day

Sometimes I wish I could just take a magic wand and wave it over my head to banish my headache away.  It would be nice, wouldn't it?  Of course, we all don't live in the world of Harry Potter or any other magical land so it is not possible.  It is simply a fantasy.

Peony and I tried, well, okay, I tried to take another nap today but Peony kept me up.  When everyone comes home I will try again.  I will take my break through meds and head for bed.  It just stinks that it is so bad.  The back of my head has been the worst lately.

I do hope it gets better.

Peony helps my anxiety a lot.  Here is another great picture of her.  I hope you like it.