RUNNING ON EMPTY

Just what I feel like.

Just what I'm doing.

I have been dealing with the puzzle of a thyroid that's attacking itself, nodules on my thyroid and a lovely flare that has knocked me on my fanny.

I can't seem to keep my eyes open. I've been sleeping 12-14 hours a day. Normally, I wouldn't mind that but it's been forced on me. My skin looks like alligator skin and it has started to itch. There's a little difficulty swallowing but the one doctor I went to "isn't real concerned about it."

ISN'T REAL CONCERNED?

I feel like crap. 

Let me rephrase.

I feel like something that crap brought in. 

So let's examine the evidence. 

I'm real tired. I'm tired enough that I can fall asleep mid-sentence. 

I'm moving so slow that a slug moves at mach speed.

I feel like I'm going through menopause again. One minute I'm hot and the next I'm cold.

I'm going through lotion like crazy but still have that alligator look.

I'm gaining weight. (THAT IS BAD. I CAN DEAL WITH THE REST BUT THIS????)

I ache more than usual.

My skin is peeling underneath my nails.

My hair is shedding worse than Buster's.

I'm craving carbs. (Ok.....so what??)

I can't remember my own name at times.

I feel like a vampire because I hate the light.

All of this points to problems with the thyroid. This brings me to an interesting topic that I'll write when I can pick my head up. The symptoms of thyroid problems mimick Fibromyalgia.

So I'll write....

What came first the chicken or the egg?

Thyroid of Fibro??

I'm going back to bed.

ANOTHER MILE IN MY SHOES

When people say,

"I know how you feel"

or 

"I get tired too"

Give them my shoes for awhile.

How does your day start out? If it's anything like mine you're hobbling to the kitchen feeling like the tin man in bad need of an oil can.

I'm on a search for caffeine.

I need coffee and as bad as it is I have a diet coke chaser. I've tried giving it up cold turkey but I don't like plain water. I will say that I've cut the diet cokes WAAAAY DOWN but first thing in the morning....well, so far it ain't happenin'.

Then I slug down the medications that start the day. I take my thyroid medication, supplements and pain medication. This will get me through until noon. Fibromyalgia combined with hypothyroidism and a dose of autoimmune thyroiditis keeps you feeling like you're running on empty.  Energy is at a minimum and you're just bone tired. 

Tired isn't the right word and I can't think of one that adequately describes it.

As time goes on my patience level with this "syndrome" has dropped to a new low. We went to Hawaii and the beach is the place where I find my peace. I usually don't like to sit around doing nothing but put me on a beach and I'm one happy camper. Going there and dealing with the plane trip and the headaches of travel was something new to me. By the time I got to the beach the pain was horrible but I was determined to put it aside and feel the peace of the water. No matter what I did or how I distracted myself finding peace was difficult. 

I still felt like crapola that washed ashore.

People tell me how fortunate I am that I don't work anymore. I wish I felt fortunate. It really is tough to be in management mode on a continual basis.  At times, there is frustration but along with it comes the realization that life could be a lot worse. We can smile but that smile sometimes masks a great deal of pain. The smile also conveys a sense of well-being. Funny, isn't it? Well-being; that isn't even close to the real meaning of the word.

We manage a myriad of symptoms that change on a daily basis.

There are so many symptoms that plague us. We even ask ourselves.....is this the fibromyalgia or something else? I get tired of explaining that another ugly symptom has reared its ugly head. I am lucky in one respect. I've got an incredible doctor that describes himself as "nosy." He doesn't brush me off and he sincerely cares about how I feel. We try to rein in the beast but there is a tiny place that houses the fear that every twinge and twitch brings. 

Trust me, it costs a lot to be sick.

Insurance or not....fibromyalgia is expensive. The management isn't cheap and it seems like something is always out of whack. Now, it's my thyroid that is dealing me fits. The thyroiditis is flaring up and my internal thermostat is fluctuating like crazy. I can't sleep, my skin is dry and I get hot and cold. They found a nodule on my thyroid and I have to have that checked out.  What comes next?

The days of running around like I don't have a care are history.

Everything that used to be precious to me has faded into the background. I had boundless energy, thrived on stress that came with my job, working in sales and I had a memory that bordered on eidetic. There was a sense of pride in myself and my abilities that are a vague recollection. Sometimes I don't recognize the person I've become......the person that can't remember why she walked into the room. The fibro fog......it burns off but when it hits it's thick and it envelops your world in a cold and thick blanket.

Back to the symptoms.

Pain, fatigue, muscle spasms, insomnia, stiffness when you stay in one position too long, difficulty remembering or concentrating and numbness and tingling. Then there's the sensitivity to odors, light, chemicals, noise, medications and heat or cold. They symptoms that I mentioned are just the top ones. There are MANY MORE. These symptoms can intensify due to time of day, exertion, hormonal fluctuations or even the weather. Is it any wonder they can't get a handle on this? 

So here's what we feel like

and 

here's what we were.

and here's what we will be

It's Fibromyalgia awareness month.

Try to look past our smile.

We're trying our best.

There is no cure.

Sometimes we're not believed.

And that's just the good stuff.

PLANES AND PARADISE DON'T MIX

 I tried.

I really tried.

I can tell you it didn't work.

But I tried real hard.

Have you just ever felt so lousy that thinking hurt? I was getting ready to go on vacation and I was stressed.

Very stressed.

When did packing a couple of suitcases become so stressful? I couldn't decide what to take and it wasn't the clothes. It was taking the crap that I use to manage pain and I was terrified that I'd be curled up in bed in paradise.

Unfrickingbelievable.

Forget the medication. I had to take a tens unit with extra pads for the electrodes. I took aromatherapy bottles. Did you know you had to advise the TSA that all these items you put in a Ziploc bag are medically necessary? Just as a shout out to the TSA, they were wonderful and took a look at me and offered to help me through the screening when it looked like I was going to fall over.

When I got on the airplane I was prepared. I had taken pain medication and half a muscle relaxer. I was concerned because I can't sit longer than 20 minutes and even that is a stretch.  I had my iPad and, mentally, I was ready. I really appreciated the bulkhead because I could stretch my legs straight out and put them on the wall in front of me. I plugged in my earphones and turned on the tens unit and, Hawaii, here I come!

Not so fast.

I was good for about 2 hours. That's when I had to start popping the medication. I stood up. I walked down the aisle. I meditated. I can honestly say that I was in a good frame of mind but my body was in another picture altogether.

Let's say I made one tiny mistake.

We live in a society that is a tad paranoid.....and rightfully so. There are some crazy people out there right now. We do have to become more aware and speak up if something doesn't look right, however, I didn't take into account what electrodes fastened to my body might look like with a small device that looks like a remote detonator.

More than one head looked at the wires sticking out of my pockets and one motioned to the flight attendant. I was waiting for the lavatory and she came over to me and told me the story. We kind of got a kick out of it but, one the other hand, I thought it was admirable. This is a very good thing......watch and speak up.....no matter what.

Anyway, by the time I landed I was ready to hit the beach. No matter what frame of mind I was in the pain was shooting down my legs. I tried to ignore it and think myself out of it but to no avail. 

Pain is pain. 

I couldn't even sing Leaving on a Jet Plane to get myself out of it.

But there is a good side to this.

I didn't get arrested when we landed.

HERE'S MY NUMBER SO I'LL CALL YOU MAYBE

The stress of chronic illness.

Where do I begin?

Chronic illness:  the invisible shackles that bind us. It's been said that we "acquire" Fibromyalgia due to stress. What they fail to acknowledge is the stress that chronic pain brings along with it.

One of my favorites is agreeing to something social. Now, in the back of my mind I'm thinking, "should I put several caveats in the agreement so I don't look like a no-show again?" 

It seems that everything is a fight. Not a physical or verbal fight but a fight of circumstances. You feel like you are fighting against the immovable object.  I was driven, competitive and work obsessed. Then I got slammed and it all went out the window. When you have to redefine yourself....well, it isn't pretty. We go from mach 2 to ZERO and that takes its toll. That alone brings all kinds of stressors. Most of the people I know define themselves by their work and I was no different. 

I was in New Home Sales and loved it. It took a long time to get over the fact that I would never man a sales office again. There is a lot of climbing stairs, movement and memory involved. There are days that I still have a tough time dealing with it, not only because of the income, but I loved what I did.

So, back to feeling like cow plop.

When I have something I want to do it's kind of a crap shoot whether I'll go. If the pain level is manageable...of course I go....but on any given day....well, that's up for grabs too. Weather seems to bother me and it's been haywire lately. 

We want to go away and the stress of traveling is just one more thing. When you can't sit for more than 20 minutes and it's a five hour flight......what do you do? I don't love flying on the best of days let alone the worst of them. Just to get the bulkhead seats I had to get a doctor's note and show medical records for a reason that I have to sit there. Then the humidity levels are much higher than they are where I live......I'm just hoping that I can sit my fanny on a beach and not care how much pain I'm in.

Did we say stress? It seems that everything has stress attached to it. It may not be overt but it's still there. Why? Because we cannot fly by the seat of our pants anymore. Every little thing has to be planned out and accounted for......and even then it may not work out. I get so tired of being tired and in pain. I want to shake it off and have pain-free fun.

I want to get out and call people and enjoy life. Now, I'm afraid that I'll be a big drag because I just can't do what I used to do. Pain, fatigue and nerve damage.....did I say stress?

Gee............

Everything revolves around me.

That used to be a good thing,

Now, it's a pain in the fanny.

Notice I said fanny.

THE BASEBALL BAT REACTION

Here we go again.

Is our pain all in our head?

If it is, what word would I use?

I found one.

I was reading a study on Pub Med.gov (I've included the link here) and there was a word for people that have a tendency to respond to illness and psychosocial stress with pain, fatigue and an increase in symptoms.

The word was Fibromyalgi-ness.

Interesting. I've never heard that word before and in the context I wasn't sure I liked it. If I get the connotation behind the definition, it's basically saying that if life gets too icky or we get sick we play Camille.

I can see me now. I'm going to place my hand on my head and faint dead away when life gets tough. If that was the case I'd be dead. I do believe that some people tend to be a little more dramatic when they are sick or hurt. Every man I've ever been with falls into this category! I've always said if men had to go through the pain of childbirth the human race would have died out.  Like everything else, there are those that magnify their symptoms and there are those that try to suck it up and hide them. 

What I think is Fibromyalgia is being shoved to the somatic disorder wastebasket.

I think I'll become Jeff Foxworthy........

If you have one or more that are distressing or disrupt your daily life......

You might be SSD.

If you spend excessive time and energy to these symptoms and your health.....

You might be SSD.

If you have a high level of anxiety about your health or symptoms.....

Well, you might be SSD.

BUT.......

If you have a predominate pain complaint....

well, you might be categorized in other psychiatric diagnoses.

I don't know about anyone else but I think this is a step back to the Stone Age....

Like I always say, I want to beat the crap out of someone with a baseball bat and let them live that way for weeks, months and years and then TELL ME THIS IS A SOMATIC DISORDER. 

(and just for the record, I'm not depressed, I haven't been abused, I haven't had tons of surgeries and I'm not overly dramatic about my health and don't sit wringing my hands about the pain)