Pacing Yourself

One of the first things a person with fibromyalgia or any type of chronic pain disorder usually learns, is that they have to pace themselves.  I'm well aware of this, yet sometimes I "forget" and think I can just do whatever I want, whenever I want.  Even though I know better, that's what happened yesterday.

My husband is an avid sportsman.  He loves hunting and fishing.  All of the fishing he's done throughout his life, he'd never gone Walleye fishing during the annual run.  I couldn't believe it, because the Walleye run is a big deal around here.  When the run is at it's prime, you drive past the Maumee River to see guys lined up shoulder to shoulder out in the water.

This photo represents a very small amount of people, late in the evening Wednesday, in one particular spot.  To be completely honest, I took this photo more for the cloud that appears to have a silver lining then I did to try and capture the fishermen LOL.  Anyway, Jason had decided that this year he wanted to try Walleye fishing.  He bought a pair of waders from the next door neighbor, who hunts and fishes with him, and he was itching to get out there.

Jason had yesterday off of work, and that was to be his first day Walleye fishing.  He'd asked me if I wanted to go along with him, to get out of the house.  I said yes, that I'd take along my Kindle to read, and I'd take my camera.  Even though I still have a lot to learn, I love photography.  It's what I do for fun and relaxation.

I knew that I'd have to get up early, which is usually a problem for me where I have such trouble falling asleep at night.  I kept telling myself that it didn't matter, that I'd will myself to sleep if I had to.  I just wanted a fun day out of the house.  Yeah, well, that went over real well LOL.  The more I'd try to fall asleep, the more frustrated I'd get that I wasn't falling asleep, until I had myself in a great big mind tangle.  I finally gave up and crawled out of my bed, out to my computer for awhile.

All of a sudden I hear "Amy.  Amy get up.  Are you still going with me?".  I crept my eyes open, and moaned "Yeah, I'm getting up" :sigh:  Four hours of sleep.  Jason has a big truck.  This truck is high, and it doesn't have running boards to use as a "ladder" to get in.  I'm 5 foot 3 inches tall.  I usually never go anywhere with him if he's taking the truck, because I have to grab and pull my big butt into this thing.  I know it's going to hurt my shoulders and knees getting in and out.  I kept thinking to myself "Today I don't care.  I'm going to do it!".  Mistake number 2.

Mistake number 3 for me, was getting in and out of the truck more times then I actually had to.  His first stop was to Walmart to get his fishing license.  I thought about waiting in the truck for him, but we were at a store!  Items to look at.  People to watch.  Out among the living and breathing!  How could I just wait in the truck?  So, out slides my big butt and into the store I march.  Mistake number 4?  I walked right past the carts instead of getting one.  I usually always push a cart, even if I'm only grabbing one or two items.  It helps me walk and stand without as much pain, if I'm pushing or leaning on a cart.

Jason decided to go to the Sandusky River, rather than the Maumee River yesterday morning.  Unlike at the Maumee river where there's a whole parking lot dedicated to the river.  Where you can see the river and watch people fish right from your vehicle, the "fishing hole" at the Sandusky River is down a large grassy embankment.  He looked at me, and I looked at him.  Then I said "Just put my chair down here.  I'll sit up here and watch.".  He helped me get myself situated (right along side train tracks btw) and down he went to go stand in the cold river water and fish.

I forgot to tell you that when we got ready to leave, my Kindle had a dead battery.  Yep, of all times.  Jason grabbed the laptop and said that I could charge the Kindle off the laptop, and read while it was charging.  So I'm sitting there with a heavy laptop on my lap, my Kindle with it's charging cord hooked between the laptop and the Kindle, a huge bottle of iced tea, the bag I carried the laptop and Kindle in, and my camera with the big lens attached.  All of a sudden I hear a vehicle.  I look up and a guy in a railroad truck was mosing towards me down the lane beside the tracks, at the top of the hill, I was sitting at.  He stops and waves.  So now, I'm trying to get out of the camp chair with all of this stuff on me and on the ground around me.  I have to pick it all up and drag the chair to where I was nearly standing on the tracks to let him pass by.

I'm not gonna lie, by this point I was tired.  I hurt.  I was pretty disgusted with the entire day.  I move everything back to it's original spot and sit down again.  Now, the Kindle isn't charging off the computer.  It's still dead.  I have nothing to read.  There's absolutely nothing "pretty" to take pictures of.  It's getting hot out which makes me feel crummy to begin with.  I have to use the bathroom with absolutely nowhere to go.  By this point, I was kind of cussing myself out for coming along.

What happens next:?  Oh no!  Here comes the first of many trains that past by me so close the ground was trembling.  I just thought the whistle was loud.  The high pitched screech of the wheels on the tracks forced me to grab both ears and cover them.  It felt like someone was shoving ice picks through my ears, into my eardrums! All I kept thinking was "Please don't let this train derail!".

After a few more mandatory stops on the way home, a few more times of hoisting, pulling and dragging myself in and out of the truck, I was finally home.  I did not have fun.  It was not the nice, relaxing outting I thought it would be.  I hurt myself.  Shoulders, knees, and back hurt so bad that Ultram didn't touch it.  Hot bath soak didn't touch it.  Ultram kept me awake again last night until 4am.  Was already tired from 4 hours of sleep the night before.  Today?  I hurt.  I'm tired.  My head is absolutely killing me.  I feel kind of grouchy.  I did not pace myself yesterday.  At all.  You know what though?  Fibro didn't win because I did go out and do these things.  I didn't hide away in my house, behind my computer screen.

All of this, and he didn't even get one of these:

A couple of random guys was nice enough to allow me to take photos of the fish they got LOL.

The Dreaded Fibromyalgia Diagnosis

Last October, I finally had my long awaited appointment with the Rheumatologist.  I had waited months to get into this guy.  He came in, spent about 10-15 minutes with me, then asked me to meet him in his office.  When my husband and myself sat down with him, he said that he believed I had Fibromyalgia.  I didn't like hearing that.  After all, isn't that just a diagnosis that a doctor gives someone when they can't figure out what's wrong with them?  MY bloodwork revealed a weakly positive ANA, a high SED rate, a high CRP.  That wouldn't indicate just Fibromyalgia, would it?

On the drive home, I read through the pamphlet he'd given me on Fibro, from the National Arthritis Foundation.  Yeah, I screamed out in pain when he'd applied pressure to the tender points.  Yeah, I do have insomnia.  I do have that thing they call "fibro fog", and I'm stiff and sore when I wake up.  I have headaches almost daily, and symptoms of IBS....but I still wasn't comfortable with a diagnosis of Fibromyalgia.  More so then not being comfortable with the diagnosis, I wasn't comfortable with the doctor.  I felt that he rushed, he cut me off when I'd try to speak, and that he in general was just a complete pompous ass.  He made me feel stupid.

They'd given me another appointment to see him again the end of December.  Even though I didn't personally care for this doctor, I decided that maybe he just had been having a bad day the 1st time I'd seen him.  -Or maybe I was the one that had a bad day.  I kept my appointment, but again I was made to feel stupid and like I was wasting his valuable time at roughly $200 for a 10 minute visit.  I wasn't told anything new.  He didn't do anything new.  Yet I was instructed to come back again the end of February. 

An internet friend had been going through roughly the same thing I was, but she was being seen at the Cleveland Clinic Foundation in Cleveland, OH.  She raved about how highly she thought of the CC and the doctor who she see's.  I did some research and was very impressed.  I called to see if they'd take me for a 2nd opinion appointment.  They were happy to do so.  Although I wasn't seeing the same Rheumatologist that my friend goes to, the doctor I was to see was also highly trained with great credentials.  All of the Rheumatologists there are wonderful, experienced and knowledgable.

I went to my 2nd opinion appointment and can't say enough about how impressed I was.  I live roughly 2 hours from there, but Dr. Gota and the CC is well worth the drive.  I actually was at my appointment longer than it took me to drive there.  After roughly 4 hours there, 13 tubes of blood, x-rays, and u/s I walked out still having that dag gone diagnosis of Fibromyalgia...but with a clearer understanding of Fibro and that it really can hurt that bad and still be just fibro.  I also walked out with the additional diagnoses of AC Joint Arthritis in both shoulders, Osteo Arthritis in both knees, PCOS (which isn't even her speciality...it's a GYN issue, but she cared enough to do the tests), and IBS.  I had been diagnosed with the bone spurs on my hip from the 1st Rheumatologist and his x-ray, and the diagnoses of spine bone spurs and Tarlov cysts from an MRI that a pain management doctor had ordered about a year ago.  That same MRI had also revealed arthritis in my neck and spine too, but neither of the Rheumatologists have mentioned that to me so I don't know exactly where that stands LOL. 

Some days I can barely move, from the pain I have.  I will never again underestimate the pain that Fibromyalgia can cause.  I will never again say just Fibromyalgia.  I will never again think that this syndrome is just something made up.  Unfortunately, I now know how evil Fibro can be. 

I named this blog The Fibro Frog for 2 reasons...one was a play on words for the horrible Fibro Fog I suffer from almost daily.  The second reason is because I've always loved the acronym frog...fully rely on God.  I've been doing a lot of that lately.  Daily, as a matter of fact.  I've also decided to stay on with Dr. Gota at the Cleveland Clinic.  I mean, the CC is rated as the 4th best hospital in the U.S. so if I'm within a 2hr drive of there, I'm treated like a human being there, my pain and symptoms are real to them, why in the world should I drive 45 minutes to a guy I can't stand?

I hope I get a lot of followers on this blog that will comment and contribute.  Maybe we can build a network of support for each other, and share secrets of what works for us.  Granted, no two people with fibro or even arthritis will suffer the same symptoms all the time.  Not everything that works for one person will necessarily work for another, but maybe (hopefully) we can all work together to help one another.  At the very least, we can spread the word about how real Fibromyalgia is, and bring awareness to this evil thing.