Fibromyalgia Awareness Video Contest

I am entering a Fibromyalgia Video contest.  To get me points to win, please “like” it here, or you can like it at the follow Facebook address:  www.facebook.com/FMAwareness2012 (you may have to scroll through posts to find mine).  Please note…likes on the actual Youtube video don’t count. 

Thanks for your “like” vote 😉

http://www.youtube.com/watch?v=KigMTje5F_I&feature=youtu.be

Sorry…my system won’t allow me to put the actual video on here.  So…click the link to take you to youtube.  Watch it.  Come back here and like it or go to facebook and like it 🙂   (please note:  if you are not a WordPress member, you’ll have to go to facebook.)

 

 

 

Salsa, Merengue, Raggaeton, Fibro Fog…

 

 

It’s hard to believe it was only a year ago that I was writing about Ultimate Fitness and their annual Zumbathon.  Yesterday marked their fifth annual Zumbathon and once again, it was a blast.

I re-read my post from last year and had to laugh.  I noticed I wrote a lot about my nervousness when I went on with fellow students to do a song with one of the instructors.  It’s hard to believe that a year later I was leading my own crew as an instructor…and yes…I was still a little nervous.

About ten minutes before I went on with my crew, I had a MAJOR fibro fog moment and couldn’t remember my song.  *gulp* I have done the song a thousand times and still blanked out.   Fibro fog moments can be so irritating.  A thousand things go through your mind except the ONE thing you want to remember.

*How much time do we have before we go on?  Do I have time to practice?*

*Oh no!  Now I have to pee.  Do I have time to practice AND find a bathroom?*

*Come on Jennifer, you know this…you just did it in class Wednesday you dummy!*

 I went to the dressing room, googled the song as quickly as I could to listen and get my memory back.

*whew*

Crisis diverted.  (Well sort of…I only forgot one move…thought I’d played it off until one of my crew members behind me giggled.  And THEY were worried about forgetting it…sheesh). 

I know it sounds generic and I probably sound like a walking advertisement, but I genuinely don’t know what my life would be like if I wasn’t involved with Zumba.

People seem confused about why I intentionally push my body when it may mean extra pain.  It’s hard to explain that if I don’t move and don’t push myself a little bit, my pain would be much worse. 

Yes.  After three hours of Zumba I hurt.  Was it pain I couldn’t handle?  Nope.  Did my pain slow me down?  No way.  Was it worth being a little extra fatigued and have little extra pain today?  YES!  My fibro is already to battle three hours next year!

I feel very proud of myself to not let fibro keep from becoming a Zumba instructor.  I had the opportunity with this Zumbathon to meet other instructors from all over Indiana.  I got some great advice while talking with them, was inspired by their different teaching styles, and laughed a lot with them.  It was a really fun day.  I feel very blessed with the friendships Zumba has brought me.  I can’t imagine how dull my life would be without such a hyper, funny, and caring group of people in it.

Thank you Wal-Mart…

 

 

Dear Wal-Mart,

Thank you.

-Jennifer

Yes.  You’re reading that correctly.  For those of you who have braved Wal-Mart on a Sunday afternoon, I’m sure you think I’m crazy for my “Thank you”, but I do actually have a reason to love the mega store today.

Is it the roll-back items, price matching and “everyday low prices” they advertise? 

No.  Not really.

Is it the cashier who insists on bagging my leaky chicken with my fresh produce? 

No.  Definitely not.

Is it the inevitable group of Girl Scouts, Softball, Soccer, or any other group from a fundraiser who chase you in to the store, and back out of the store for your loose change? 

No way. 

Is it the endless “People of Wal-Mart” pictures you can find online (www.peopleofwalmart.com )? 

Ummm…yes… a little bit.   Who can resist a giggle at pictures like this?  (Yes…this is from Indiana ladies and gentlemen).

Actually I want to thank Wally World for putting out the generic, “Wal-mart version” of Zyrtec. 

 

Up to this point, any allergy medication I’ve tried has left me with a nasty migraine the day after I take it.  After many headaches and skin problems, an allergy pill has been recommended by most of my doctors, but due to the headaches, I’ve never stuck with any.   This has been the only pill that has not given me a headache or made me feel hung over after taking it.  It has also helped with my sinus problems and my skin has been looking better (on a side note…did you know that 70% of fibro patients have skin issues?). 

The greatest benefit I’ve seen from this pill?  Sleep!!  I take my pill right before bed and have been sleeping through the night. I fall asleep fast and sleep deep.  I don’t know if this sleepy affect will last the longer I take the medicine, but I sure hope so.  I’ll take any sleep I can get…even if it’s only temporary.

It’s been a really long day…

I read back through some of my old blogs today.  I’ve been down from a bad flare and it was nice be able to look back and see I’ve survived these flares before.

I also noticed I’ve given a lot of facts about fibromyalgia.  I’ve touched on my different symptoms, both old and new.  I’ve talked about treatments that work for me and those that failed miserably.  I’ve mentioned that fibro has affected the people around me.  I’ve also written a lot about staying active and how important that is to me.

When I started writing this blog my hopes were to give people a better understanding of what it’s like to have fibro.  I think one topic I’ve been avoiding is what a “flare” is really like.  I mention it a lot, but haven’t seemed to go into great details.  To be honest, flares are ugly, painful, embarrassing, exhausting and I don’t like to talk about it.  To stay true to the intentions of my blog, however,  I feel it is a necessary topic.

So, how do I even begin to talk about such a huge part of fibro?  A list of flare symptoms would not even begin to describe what it’s really like.  I decided the best way to “show” you a flare is to take you through my day yesterday as I fought through a bad one. 

(I’m starting this with a disclaimer…Parts of my day are probably going to sound awful, but don’t worry, I’m doing much better today!)  

5:30- Alarm clock went off – I’m already exhausted and realize I can’t turn my head from neck and shoulder pain.  *re-set alarm*

6:30- Really have to get up now.  Needles are going through my neck and shoulders.  I’ve slept on my right arm and it’s numb.  I feel like I haven’t slept in a year. 

6:45- Shower and get ready for work.  I know I look like a mess, but to be honest…I’m in too much pain to care.

7:15- Leave for work and blast Zumba music to keep me awake.  I have a stomach ache from being so tired.

7:45- Arrive at work, down a huge cup of coffee in hopes that I wake up at all.  Sit and try to wake up as my legs twitch and my shoulders throb.  I can feel my heartbeat in my shoulders like when you accidently hammer your thumb. 

9:00 Conference call- So tired I’m not sure I am following what we are covering.  *Pay attention Jennifer!  Stop thinking about pain!* I need to ask a question.  I ask it and everyone’s confused.  I realize I’m not making sense and saying things backwards.  Major fibro-fog and I can’t spit out what I’m trying to say.  I get so frustrated it only makes the fog worse.  I give up on asking anymore questions.

12:00- try not to cry through lunch.  The only thing I can think about is my shoulders.  But wait…now there’s a pain creeping up behind my knees and down my calves.  Don’t cry…Don’t cry…Your co-workers won’t understand.

1: 00- Try to concentrate on Medicaid billing.  So tired…so tired…ugh…roll neck, do some stretching while billing…it’s not working.

2:00- I have no choice.  I need caffeine.  Drink a coke and it gives me another stomach ache.   I get back to Medicaid.  Don’t cry…Don’t cry…only two more hours to go.  *why is it so cold in here?? It’s 75 degrees outside*

3:00- Distract myself by opening my office window.  It’s warm and my stiff body could use the nice warm breeze.  I open the window, take a deep breath in, breathe in the smell of the dirt from the garden the maintenance man had tilled, and get an instant headache.

4:15 – Time to go!!  I can’t make my half hour commute without moving around for just a bit.  I stop at a store to find a shirt for an up-coming Zumbathon.  They don’t have the color, but at least I could move for just a minute and get some pain out of my legs.

5:00- Home.  Have the immediate urge to go straight to bed, but know better.  Went to the park for a walk/jog with my husband and finally felt somewhat human for the first time all day.

6:00- Had to run through some new Zumba songs for my class the next day.  *PLEASE don’t let me feel like I did today when I have to teach tomorrow!!*

8-ish- Husband tried to massage some pain from my legs and shoulders.  I could only handle about 10 minutes before I needed him to stop.  He asked if it was “better.”  When I told him it helped but he can’t “fix it”. He got quiet and said “but I want to.”  Believe me…me and about 5 million other people wish you could too.

9:00- there’s no more fighting it.  It’s time for bed.  My husband asked me if I was sure I wanted to go to bed so early.  YES!  There was no question.  Luckily I feel right to sleep.

Kicking and Screaming…

Now that I am almost two years into my diagnosis of fibromyalgia, I’m wondering when the surprise symptoms are going to stop.  I was told when I was first diagnosed that fibro doesn’t really get better, but also doesn’t get “worse.”  I beg to differ.

 It seems every few months or so I find a new symptom.  I asked my rheumy about the condition “progressing.”  They told me since I have gone off any drug treatments I may just be feeling these pains and problems for the first time.  Their solution…more drugs.  I was given a prescription for a very light muscle relaxer.  I took half of a tablet in desperation about a month ago and got nauseous and had the same heart racing problem I’ve had with all the other drugs I’ve tried.  As of today…I’m still fighting this drug free and I intend to keep it that way as long as I can manage.

 Because of this drug-free decision, I have to learn to manage my new symptoms.  One of the most annoying I’ve developed over the past few months is muscle twitching. I am having involuntary twitches, mostly in my legs, almost daily. I think “twitching” may be too mild a word to describe it.  It’s more like my legs have had enough of this fibro nonsense and they’re jumping up, running away and getting the hell outta dodge! 

 I have the most trouble at night when I lay down and in the early morning.  It’s an unfortunate side effect when it tends to happen in our managers morning meeting at work and my leg jumps up and I inevitably hit my knee on the desk.  The twitch seems to come along with a bang of the knee on a desk or chair, and few choice cuss words tend to fly out of my mouth at the same time.  I’m sure this has been entertaining to my co-works, but my knees are covered with little bruises. 

 I’m not alone with this problem according to www.fibromyalgia-symptoms.org.  The following is listed on this site:

 Muscle twitching and weakness are common symptoms of fibromyalgia syndrome. In fact, more than half of fibromyalgia sufferers seem to experience at least one of the two symptoms.

Muscle twitching in fibromyalgia seems to be related to the location of specific tender points throughout the body. These tender points tend to irritate nerves in the body, which may cause muscles to twitch involuntarily. Muscle twitching may also be related to the high incidence of sleep related disorders in fibromyalgia, including bruxism and restless leg syndrome. Though the cause of these disorders remains unknown, they do cause involuntary and compulsive muscle twitches.

Muscle weakness is also a major problem for fibromyalgia sufferers. Some researchers theorize that this is due to the fact that many fibromyalgia patients do not perform enough physical exercise to maintain their muscle strength, due to muscle pain and overall fatigue levels. However, recent studies have linked fibromyalgia-related muscle weakness to a dietary insufficiency. In particular, those with muscle weakness appeared to have low levels of Vitamin D in their system. When treated for four to six weeks with Vitamin D supplements, symptoms of muscle weakness improved and even disappeared.

I definitely do not have a lack of physical exercise, but because I do push my body so hard with Zumba I might try a Vitamin D supplement to see if it helps.  It would also be fantastic if spring would arrive so I can get some natural Vitamin D treatments!

I’m considering myself lucky at this point that my twitches haven’t done more damage.  When I looked this subject up online, I found multiple stories of husbands and wives getting bloody noses, black eyes and kicked out of bed by their fibro-suffering spouses. 

When I said I’ll fight fibromyalgia, even if I go out kicking and screaming, this is NOT what I meant.