THE HIGH HOPES OF 2014 PARADIGM

Death,

Destruction,

Chaos.

That's just the tip of the iceberg

Well, it's been one heck of a year and, personally, I am glad to see it go. Life always has its challenges and mine is no different than yours. It's when you live with chronic pain and fatigue that it gets a little tricky. Even in the best of times resolutions are a little tough for me. I start out very enthusiastic and then I seem to forget that I had any. I guess goal setting isn't my strong suit. 

I know I'm not big on follow-up, I'm more of the idea man.

But I think this will work.

Here we go.....

First, I resolve to be a little more accepting of me. I know, I make this resolution every year but I think I need to be reminded of this every year.  OK, so I have limitations and pain kind of reminds me on a daily basis that it's there but.........

Next, I need to be a little kinder to my body. I know that if I push I will pay but I still do it. I want to get things DONE! It's that pesky old Type A personality that has plagued me since birth that keeps coming out but..........

Also, I need to be patient and not make myself crazy because I'm frustrated. I need to stop and think "this too shall pass." No, I'm not going to get my wonderful memory back. It falls under the category of "oh well". I'm going to forget words because this is the nature of the fog.......but..........

I need to stay focused on joy. 

I'm not going to go into some sort of nirvana. That just isn't me. I'm not the type of personality that wouldn't recognize stress if it jumped up and bit them. The idea of acceptance of this thing we call Fibromyalgia, to me, means that I climb in bed and pull the covers over my head and then, that's it, life is over. That I can't do and I won't do.

What I mean is that in the worst of times we need to stay thankful and grateful. We need to put one foot in front of the other and keep going. As tough as it is at times; as overwhelming as the pain can get, as tired as we are, as easy as it seems just to give up, we can't. 

I've seen some pretty dark stuff this year. I've seen what happens when the human spirit doesn't have the will to take it any longer. It tends to put things into perspective. I will never minimize what chronic pain can do and I don't want anyone to think that is what I'm doing. Pain is one tough cookie to deal with on a daily basis and it definitely changes you. As bad as it can get and as rough as it is, I'm saying we need to get through it.

As I've always said,

Fibromyalgia isn't for sissies.

My mantra for this year?

IT COULD BE A WHOLE LOT WORSE.

Because it can.

To all my friends, family and followers.....

I wish for a happy, healthy and prosperous 2014.

God Bless every one of you.

Be kind to each other and, most of all....

Be kind to yourself.

Happy New Year!

Rosemary

THE HOSPITAL, CHRISTMAS EVE AND THE DOCTORS TRIANGULATION

What is it about the holidays?

or just the month of December.

It has been a doozy.

And that is an understatement. There was the loss of a family member and the almost-loss of another. I sat in a hospital (which I hate) for hours on end.....for days.....until the crisis was over. Then a funeral.  That, funnily enough, made things a little bit better. While sad for the rest of us left behind, that funeral was truly a celebration of a remarkable man's life. I can only hope when it's my turn that I will be loved as much.

Then shopping for presents.

I know, I know......I could have done this all online but it seems that I'm a glutton for punishment. I just had to go to the mall. No, that's not quite the truth. I just love Nordstroms. Between Nordstroms and Costco, I'm in heaven. Actually, I admire their return policy. So, I brave all of that and start to wrap presents.

For some reason the present wrapping is worse than braving the mall.

The motions of wrapping presents seem to set me off for some reason. Maybe it's the repetitive motions.....I don't know but by the time I was done, I was done. I am now officially sick of shopping and wrapping presents. That, my friends, doesn't happen very often. 

This year has been bad.

Just bad.

I don't mean about the losses. I don't mean to minimize them...that's not my intention at all. I'm talking about the flares and the pain and the overall fatigue. It just hasn't stopped.

And I'm sick and tired of being sick and tired.

It's not just the fibro that's been flaring. I've got quite a few disks from "the accident" that have been acting up. Now the doctor wants to implant a neuro-stimulator that will help mask the pain. I've heard pretty good things about them. The people that do have them think they are the greatest thing since sliced bread. Even the shrink I had to see said they give you a new lease on life.

I know leases and the only ones who win are the landlord. 

And this little baby will surely be the one in charge.

I'm not sure I want a battery operated "thing" surgically implanted. For some reason, it is required to see a psychiatrist before you can be implanted with this device. He found me very well adjusted considering the extent of my back injuries. I mentioned the Fibro and he didn't seem to flinch. Maybe that's a good thing. Well adjusted?? I had to laugh at that one.

But therein lies my problem.

If it was just the back I'd be OK with it, but it's not. It's the Fibromyalgia that concerns me. This will set off a flare. The reason I know this is because every single time I have a procedure done, it takes me months to recover. I have no idea what kind of reaction this will set off. I get poo-pooed by the doctors but it's my body and I know it well. It may help my back but it's going to wreak havoc with the Fibromyalgia.

So what to do?

Oh......and then????

To top it all off?

I got the flu on Christmas.

Let's just add that ol' tiara!

Oh......just one more thing!

I got a flu shot this year.

Oh yeah.....that worked.

WHAT CAME FIRST, THE THYROID OR THE FIBRO?

Oh yay!

Another cure!!

Never mind the research.

Everyone else has been wrong.

It seems that everyone else has been misguided and the cure for Fibromyalgia has been right under our noses all this time.

It's your thyroid that causes the Fibromyalgia.

Sounds simple, huh?

I will agree that a lot of the symptoms sound the same but, at the same time, managing one does not automatically mean the cure of the other. The interesting part? The irrefutable evidence is currently on a website that is offline. 

Hmmmm.......

My doctor gets it. He knows there is a difference between normal and optimum. I don't feel well just being barely normal (OK, don't even go there!!!). I also need T3 and T4. I can't take levothyroxine alone, it just doesn't work for me. Getting my levels in check took some doing but now they seem to be where they need to be. 

I think it's interesting that that a lot of these symptoms are the same. I don't mean to sound flippant. There are a lot of issues with our body and the thyroid may just be one of them. The HPA axis dysfunction has long been a favorite theory of mine. I just think it's suspect when you take the same symptoms and point them to a simple fix.

Don't you think researchers have thought of this?

Maybe there is a problem with the thyroid due to low body temperature and basal metabolism that is common in Fibromyalgia patients, I don't know. Maybe some patients who were diagnosed with Fibromyalgia were actually severely hypothyroid. Maybe it is a problem but, right now, we just don't know. It's a shame that promising studies set themselves up for ridicule.

Why can't they just say, "another piece of the puzzle found."

Or, "study looks promising,

But, no......

Everyone else is stupid

And the cure was right under their noses.

So far, no one has been cured of Fibromyalgia,

But we can!!

(oops, the website with the proof is gone)

Is there any reason this shouldn't be suspect?

The thyroid science study link

IS THE F.D.A. ON D.R.U.G.S UPDATE

Yes, Virginia....

There is a Santa Claus.

All it takes is a little pressure from the Attorney Generals from 28 states and, guess what? 

VOILA!

Now maybe, just maybe the F.D.A. will rethink their approval of Zohydro. 

Believe me, I am not against pain medication. I need it to control the constant pain that I live with, BUT, I keep a tight control on the medication. These drugs, even in low doses, are very powerful and they need to be monitored. I've seen what drugs can do and it isn't pretty. You can take them and not wake up. 

The letter from the attorney generals have asked for the revocation of the approval or to make it conditional and the company must reformulate the product so that it is more difficult to abuse.

What I didn't know?

Zohydro is five to ten times more powerful than the currently available hydrocodone that's on the market. WOW! To my mind? These pills shouldn't be available to everyone. It should be for terminal pain patients. If you're walking around, you shouldn't need Zohydro. It's that simple. 

The company that makes Zohydro declined to comment but the FDA representative said they are reviewing the letter.

Again, pain medication is necessary.

I believe that.

In responsible hands they make one able to enjoy life.

But you don't need an Zohydro if you got a tooth pulled.

IS THE F.D.A ON D.R.U.G.S???

I'd say....

ARE THEY ON DRUGS?

But I never like to state the obvious.

For those of us in the chronic pain community, we know how difficult it is to receive adequate treatment. If we tell the truth about our pain, we are considered neurotic. If we underplay it, we obviously don't need medication. 

There's no easy way to play it.

On October 25, 2013 the FDA drew huge praises from the addiction community by moving hydrocodone with acetominaphen to a Schedule 2 narcotic. What this means is that instead of going back to your physician every six months for followup, you have to return in three months. In addition, the doctor cannot call in your refills. You must hand the prescription to the pharmacist personally. They have made it harder to get Lortab, Vicodin and other addictive painkillers. They are supposed to make painkillers harder to abuse. For example, they inject Oxycontin with a gel that makes it harder to crushed and snorted. This kind of abuse deterrent is supposed to be a public health priority. 

So what did they do?

They approved Zohydro. 

Zohydro is a long acting opioid. This drug is not intended for as-needed use. This is for patients who need long term, around the clock treatment. Obviously, you wouldn't get this for a tooth extraction. 

This drug is not messing around. You can't drink alcohol. Let's face it, you're not supposed to drink with any pain medication but alcohol with this medication can result in fatal hydrocodone plasma levels in the blood. You even have to be careful taking anything that contains alcohol. This can even mean cough syrup.

You are also instructed by the insert to swallow Zohydro whole otherwise it can be fatal. 

This is their strong stance against substance abuse?

So what that tells me, this drug has the ability to be crushed up and snorted. To be fair, the makers of Zohydro have contracted with a Canadian company to come up with an abuse deterrent formula but who knows how long that will take. This drug was meant for cancer patients but everyone knows it will be on the street soon enough. Pill mills will push these babies out and they can be crushed, snorted and will kill people.

I love the insert on this drug. When addressing who should be prescribed this drug they talk about the opioid "naive." WHAT?? I've never heard that phrase before and I'm not sure I like the way that sounds.

What does this mean to me? It means people will start abusing this powerful drug and many will die. The people who it is intended for will have a hard time getting it after the stats start coming in. People need to be out of pain but because of pill mills and addicts those who truly need opioid therapy will be out of luck.

I thought the difference between Schedule 3 and Schedule 2 narcotics, as far as the refill requirements, was interesting. I live in Nevada and I have to go every 30 days to the doctor for a refill. 

Go every three months?

Not even close.

And you better not take it to a new pharmacy either.

They probably won't fill it.

THE COMFY BED THANKSGIVING CONUNDRUM

The holidays are coming!
Like everyone who writes about chronic issues,
there are hints and tips about getting through the holidays.
So, in the spirit of the day,

I also have helpful hints, observations, and a peek into my day.

Here goes!

First....Make all your grocery lists from bed. Give the list to your kids, spouse or significant other. Send them to the store. Assign the side dishes to the rest of the group.

Stay in bed.

Well, the house needs to be cleaned..so....Put a roomba on the floor. Turn on the ceiling fan and watch the dust will rise to the ceiling. Look around and decide that it doesn't look too bad. Great!! 

Go back to bed.

Get on the phone to your local grocery. Most of the deli departments will make the turkey. Send someone down there to pay for it and make sure the store is open on Thanksgiving. It is? Great! If you're exhausted from making holiday arrangements roll over and put the pillow over your head.

Stay in bed.

It's the big day!! You'll need to get out of bed to get ready to greet guests. You definitely don't want to be stressed today. Since there's plenty of football on, just wear the sweats from your favorite team. This way you're game appropriate and in jammies at the same time! If you want to put on makeup start 5 hours ahead ... that should give you plenty of time. Shower and makeup done?

Get back in bed!

Have the turkey picked up or preferably delivered. This should be done a couple of hours before the guests arrive because the wonderful aroma from that glorious turkey needs to permeate the house.  Just an FYI....place the turkey in a roasting pan and throw the ones from the store in the garbage cans outside. It helps to practice your exhausted-from-cooking look in the mirror. It also helps if you throw a little flour around the kitchen. Hold the cannister tightly otherwise you'll have flour everywhere. I learned this one the hard way. Also, I didn't realize how much my dog Buster loved flour. Yay! It's a game!!! I chased after him and had to clean the little flour paw prints that were throughout the house. After you're done cleaning the flour off the counters and floors....be sure to shake the flour out of your hair too....

Go back to bed.

I don't have to set the table. Why? Because I keep dining room table set year round. This way I don't have to worry about it. Quick tip? Just wipe the dust that has accumulated around the edges of the table. Practice your smile. Oh.....you have an hour before guests arrive?Better not push it...

Go back to bed.

Yay!

Thanksgiving is here! The smells in the house are divine! Guests are arriving and bringing heavenly dishes for tasting! It's time to gather 'round the table grateful for each other and all blessings.....(Don't hold my hands too tight....that hurts!) I'm so thankful for my family and friends.......and my bed.

As we enjoy the glorious food and company, I've been reminded of the times of years past...I sigh wistfully.....or was that a snore? Damn.....I'm starting to go under from the tryptophan. It's the dreaded turkey coma! At least when dinner is over  I can curl up on the couch pretending to be interested in the game. Stay awake.....stay awake.....stay awake....

How many hours till I'm back in bed?

I rise from the table full with bones creaking and stiff. I've been sitting so long that the pain is making me dizzy. Or is that the wine? The couch is calling and the noise from the shouts of the lastest touchdown make my head hurt. Or is it the wine?  Maybe I should head back to the kitchen and help with the dishes. Really? It's all done?? Oh how wonderful!  I'm so thankful that everyone else has cleaned the kitchen! Where did all the time go?? Dishes are washed and glasses sparkling....The dining room table has been reset waiting for next year! Really? It's time to go already? You can't stay? Did I just totally zip on the day?? I don't remember.

So I shuffle back to the bedroom and climb in my comfy bed and cover myself with a nice warm comforter. It's been a long day and I'm ready to close my eyes in glorious slumber. 

Wrong.

Now, I can't sleep.

Happy Thanksgiving!

GRACE ISN'T MY MIDDLE NAME

Balance.

I don't have any.

But, that's about right.

The Romberg Test. I had no idea what it was until my neurologist started testing me years ago. It was one of the many tests that I flunked and the doctor wasn't surprised.

There are so many symptoms. I mean, there's the obvious pain and fatigue......or the twins, as I like to call them. The creepy little twins. The pain of Fibromyalgia can be as severe as the pain of Rhuematoid Arthritis. It can be low back pain with debiliating pain that shoots down your legs (I have this and it's not fun.) 

Did you know that 40% of people with Fibromyalgia report that they have muscles spasms and leg cramps? Those aren't real fun either. Have you ever been wakened from sleep with one of those babies?

So more about balance and the Romberg test. The reason this came up?  A woman in our support group had a question regarding balance. Some of the people in our group didn't know that balance can be a problem in Fibromyalgia. So what is this test? Basically, it measures how different systems of your body work together to maintain balance. It's pretty simple to do:

1.  Stand up with your feet together. Have someone nearby just in case you have a strong reaction to this test. 
2.   Keep your eyes open for one full minute.
3.  Then stand with your eyes closed for one full minute.

A positve reaction to this test is if you sway or even fall over. A lot of times it doesn't even matter that your eyes are closed. Even when my eyes are open, if my feet are together, I tend to sway. But, let's get back to balance. It seems that most people with Fibromyalgia and Chronic Fatigue are unstable. For those of you who know me well......don't even go there...but it is true. We have trouble with body boundaries and gait tracking. When I first get up and I've been in a real sound sleep, I've been known to walk into walls. I've walked off the sidewalk and bumped into doorways.

That's why I don't drive on holidays.

Why?

If I was stopped, I'd NEVER pass a field sobriety test.

And I don't even drink!

THE WINE AND DINE DECOUPLING

I really had to laugh.

Fibromyalgia affects your love life?

Duh.

Is it cold in here?

I've been asked to go to dinner by Mr. Dreamboat. I just can't wait....I've been looking forward to this for so long. I just need to get out of my house! My heart just skips a beat thinking about it...oh wait....is that him or atrial fibrillation?

Anyway.....

The big day is here. I awake to the birds chirping just outside my window. As I open my eyes to the glorious sunshine, I shut them quickly because the light hurts my eyes and bury my head in the pillow. Ow. I moved too fast and the morning stiffness has set in. Like the tin man begging for an oil can fix, I make my way to the coffee maker. 

Great. I mean great! 

I'm really looking forward to it.

Just in case, I put fresh sheets on the bed. Now, I'm so exhausted that I have to lie down and take a short nap. I tell myself that this is good and I'll be nice and refreshed for the evening. I have a lovely lavender spray for the sheets but as the spray wafts through the air, I start sneezing uncontrollably. I'm sure the redness around my nose will go away by dinnertime.

Since dinner is around 7, I figure that I need to start getting ready for the evenings festivities around 3. This will give me plenty of time because it will take that long just to tie my shoes. Did I just say that? OMG, that won't work....I have to put on the torture device called heels tonight. I'll need another nap after I get out of the shower. 

Damn.

I shouldn't have put on makeup yet. Now, I need to fix my mascara again because it's under my eyes after my nap. Crap. I will have to start over. At least I kept my hair in a towel. OK, makeup is washed off and I start over. It's now around 5:30 and I haven't even dried my hair. I hate this part because I have to stretch my arms up to use the round brushes.

Did I really agree to go out to dinner?

I don't look too bad but I'm starting to hurt. 

The stiffness and pain has returned with a vengeance and all I want to do is get in bed. 

Oh, knock it off. 

Just start smiling.

I'm asked if I feel good enough to go.  I manage to say, "oh yeah," with just the slight curl of my lips which look more like a snarl than a smile.

By the time I limp to the car I feel like crap. I pretend to look out the window because if I say anything I might give it away. Once in the restaurant I look at all the happy people and wish I could take a time machine back to before all of this attacked my body. The room sounds loud and the waiter bumps into my shoulder as he approaches the table. That's all I needed. Nothing looks good on the menu but, like the trooper I am, I manage to listen to the waiter blather on about the chef specials. 

I WISH HE WOULD STOP SPEAKING.

I'm tired of the noise, I'm tired of looking at food that I really don't want and I'm tired of the waiter coming by every five minutes asking if I'm OK. 

What really scares me is the look on my honey's face. He's oblivious to the internal war I'm waging and I can just tell that he thinks the evening will last past dinner. He grabs my hands and the pain shoots up my shoulder. My eyes gave everything away. Plans after dinner??

Not only no.

But hell no.

I hurt from sitting in an uncomfortable chair making small talk that I am in no mood to make. We made it through dinner and I think he could tell by the way I flinched as he touched my shoulder that anything else he had in mind for the evening was going out the window.

Now, let's go back to the article. 

Who the heck wants to be caressed when every bone, muscle and fiber of your body is crying out. Even if it's a low pain day, it's AWAYS THERE and touch is difficult. Fibromyalgia and Chronic Fatigue make terrible bed mates. 

If it doesn't hurt...

you're too tired to care.

You just need to read the survey.

CLICK HERE

PRESTO, CHANGO, SWITCHEROO

How dare they?

We should be up in arms.

Is anything real anymore?

I was reading an article about herbal supplements. A lot of us use them in conjunction with conventional medicine for relief from anything from colds to pain. And everything in-between. I was appalled to read an article where the DNA was tested and the herb was nowhere to be found in the bottles and if it was a highly diluted form.

What?

It seems that greed has struck again.

This is a five BILLION dollar a year industry and what people have been buying is little more than powdered rice and weeds. Yes, it is unproven that these supplements can cure what ails us according to the FDA, but,  HOW DARE THEY???

Canadian researchers tested 44 bottles of supplements sold by 12 companies. If there was the actual herb in there it was often diluted or replaced with fillers like rice, soybean or wheat. 

Where is the oversight of this industry?

If you've used echinacea, St. John's Wort or ginkgo biloba the odds would say that you probably didn't get what you thought you were buying. Or there was a highly diluted substance being passed off as the real thing.

Just terrible.

How do we really know what we are purchasing?

I guess we don't.

Well, unless we run a lab.

I just have a eensie, weensie criticism of the article.

RELEASE THE DAMN NAMES OF THE COMPANIES!!!

HERE'S THE LINK TO THE ARTICLE IN THE NY TIMES.

ARE YOU FRICKING KIDDING ME?

I guess it's true.

All in the way you write the report.

Unbelievable.

I was reading the AOL Home page for news and ended up in the Huffington Post, Healthy Living section.

I can't even believe this.

We are at risk of being labeled a somatic illness. To me, it sets the Fibromyalgia and Chronic Fatigue/ME fight back years. We have enough trouble being believed but stick us in the DSM-5 playbook and every doctor that thought we were being lazy neurotics will feel justified by throwing us a couple of antidepressants and shoving us out the door. 

Every invisible illness is at risk. If you even act, what they interpret, as too concerned about your symptoms or have them disrupt your daily life, you are categorized as having a mental disorder and catastrophizing. Well, that can be anything from chronic pain to cancer.

Victims of PTSD, chronic fatigue, fibromyalgia, Gulf War veterans, among others, have fought health and human services and the Institute of Medicine. These institutions have ignored research and tried to redefine the illnesses in purely psychological terms.  It has been a long fight and it isn't over yet. It's a ongoing, continual fight.

But get this..........

IN ORDER TO DESTIGMATIZE PEDOPHILIA, (yes, you got that right), the American Psychiatric Association in the Diagnostic and Statistical Manual of Mental Disorders, THE DSM-5....distinguishes pedophiles who have a mental disorder as those who act on those desires. The ones who just think about it (no matter how much) do not.

Are they fricking kidding me??????????

I'm going to link to the article here because I want to make sure I get this right. Click on "article."

Get this: "The difference (from the last edition of the DSM)  is you're not automatically saying that as soon as someone has a marked, unusual erotic interest that they have a mental disorder," said Ray Blanchard who co wrote the chapter on sexual disorders in the new DSM."

We have to claw and fight our way to be recognized and these "experts" in order to destigmatize pedophilia give these clowns a pass????????? Why in heavens name should these scumbags not have a stigma attached to this!

ARE THEY FRICKING KIDDING ME???????

Let me get this straight......

If you have anything that isn't evidenced based (yet) you are at risk.

You can be labeled as having a mental disorder.

But sit in front of a computer and look at naked children and desire them....

Unless you act on it......

YOU'RE OK!! YAY!!

What a crock.

And it really pisses me off.

IT'S ALIVE!!

Sorry in advance.

This is simply shocking!

I thought it was fitting to wind up October with this post. Call me old fashioned but I really believe there are things you shouldn't mess with and randomly shocking your brain is one of them. I know there are times for this protocol; actually they call it brain stimulation, and it can be used for major depression and seizure therapy.

How would you like to be in that clinical trial?

Just imagine......you can stimulate your brain and have no pain. Whoa.....I should be in advertising.....stimulate your brain and have no pain. What a campaign.....there I go again.... it just never ends......

It's actually called High Definition transcranial direct current stimulation or HD-tDCS. You put a few electrodes on your scalp and voila!  A few electric shocks later.....your brain releases opioid like painkillers.

Sounds simple......

Wait...it's a 20 minutes session and it said it reduces the pain perception. Hmmmm.....I may be one of those people that are sensitive to wording. Must be from years of reading the fine print in contracts. 

Granted the dose of electricity is very small compared to the doses used for clinical depression or seizures. OK, what I want to know is how they figured that out. How many brains did they have to melt to figure it out? 

Anyway.....the kicker?

The researchers don't know why this works. 

That sentence speaks for itself.

Happy Halloween!!!!