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!

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