Friday, November 13, 2015


I watched 60 minutes.
And my heart sank.
Pain patients don't matter.

I know those people are hurting. They lost someone they loved to addiction and the problem all started with opioids. I basically heard them tell me that I don't know what it's like to lose someone and that it could have been different if they hadn't gotten hooked on opioids.

They wrong.
I know very well what it's like and it makes me angry. 
Very angry.

I'm not angry at the system and I'm not angry at the drugs. I'm angry because the typical reaction is, when any tragedy happens, is to blame the object and outlaw it. It doesn't matter that there are many law abiding people that depend on these medications to live a functional life. The only thing that matters is that some people have died and that they are somehow not to blame; the pills are to blame.

Funny, it doesn't work that way with alcohol related deaths.
We don't blame the car.

Let's put this under a microscope and have people spend more than 30 seconds in pain management. Instead of throwing hydrocodone or oxycodone at patients who have a tooth pulled let's try using some common sense. Instead of spending less than ten minutes with a patient in pain management and leaving with narcotics wouldn't it make sense to have some counseling go along with it? Let's also do some genetic testing so we know what the dosage should be and how it will be metabolized by the individuals system. Instead of throwing prescriptions at people could they just talk to you first and find out what is going on? Would that be too difficult?

And while I'm on the subject.......

All this so-called "shaming." There's fat shaming, body shaming, skinny shaming, illness shaming and now pill shaming..... all this garbage. When is just being mean "shaming." Puts a sweet spin on someone who just wants to be cruel. Everyone has an opinion behind a keyboard. Social Media is wonderful in some respects but, I'll tell you, I'm REAL glad it wasn't around when I was in school. 

If you don't agree with someone it is now ok to be cruel.
No. It isn't.

So we are now going to pill shame. It's not like I've got a boo-boo on my finger and prescribed pain medication. Voodoo pain is the pain that I live with. I know that at any point in time someone is going to stab that little voodoo doll with a pin and I will feel a stabbing pain somewhere. If they hug and squeeze that little voodoo doll I'm going to have a dull ache all over my body. Again, this pain I've learned to handle. It's when the pain increases to whole other level; my whole body feels likes it's being compressed like a junk car that is being compressed to the size of a box of cornflakes. That voodoo doll? It's being stabbed all over....over and over again with a ferocious intensity. 

It is that pain that makes have to take pain medication to make it tolerable.

There are a lot of people like me. Maybe I don't have an addictive personality. I heard that one from my doctor. Maybe it's because I metabolize opioids slowly. I can't take very much because it stays with me. People that metabolize it quickly may have to have a different dosage or maybe that's where the trouble comes in. I don't know. I just think we have to do things differently.

The knee jerk reaction of taking it all away will not work.

It didn't work with Prohibition.

It didn't work with the war on drugs.

All it serves is to push it underground.

Which is precisely what is happening.

Sunday, November 8, 2015


I never would have thought.....

According to the National Institute of Health people in pain use more health resources than people who are not in pain.

Ya think?

Approximately 23 million people catagorized their pain as a level 3 or 4. For the basis of this survey a one was the least severe and least bothersome and the highest was a level for for the most severe and most persistent. It was interesting that women were the most likely to report pain.

So what does this do?

I don't think the sheer volume of people reporting severe pain was expected and maybe, just maybe, they will want to evaluate what can be done for chronic, severe pain patients. The research also wants to look at complementary procedures, such as yoga and massage, that may help pain as well. 

It's clear that shoving strong pain medication to patients isn't an answer. Neither is denying pain medication. It's clear that a different approach is needed. Personally, I think that finding out how a person processes medications is key. Everyone metabolizes medications differently so how can you know how a medication will affect your body unless you test for it?  Part of the problem is I think part of the problem is that most of these people live their lives in an educational bubble. Sometimes I wonder if the people who research chronic pain and Fibromyalgia have ever been in chronic pain. I love reading articles by Ph.D's that feel if chronic pain sufferers would stop thinking about their pain, then they might not experience as much of it.

It's called pain catastrophizing.
It means just what it sounds like and what it implies is also just what it sounds like.

I'm back to central sensitization. People with Fibromyalgia have a lower threshold for pain because of increased sensitivity in the brain to it's pain signals. It's not what happens, it seems to be how it happens. Why they're stuck on cognitive behavioral therapy and trying to blame pain amplification on "catastrophizing" is beyond me. It's almost as if they can't find the on/off switch in our brains so they don't bother.  I really want one of these guys to experience chronic pain and then tell me that if we think good thoughts it will get better.

I've always said that attitude helps us get through very tough and painful times. It helps for a lot of things but it doesn't take away the pain. It is purely a coping strategy. That's all it is. There are affective dysfunctions, central nervous system abnormalities and cognitive dysfunctions. 

Even after all the research the treatments for Fibromyalgia include: Reduce stress, get sleep, exercise and maintain a healthy lifestyle. Boy, I can't tell you how much that advice helps me. Isn't that what we should be doing in the first place?

And I don't buy any of it.

So what to do?

I think they need to recognize the legitimacy of pain.

23 million people are not catastrophizing.

They are in pain.

And something needs to be done.

Tuesday, October 27, 2015


I feel like crap.
I need caffeine.
It started out bad.
It didn't get better as the day went on.
The prognosis isn't good for the rest of the evening.

Let me give you a little overview of the day. I don't know why I'm constantly surprised when I put my feet on the floor in the morning and my body feels like I've been beaten with a baseball bat. I'm used to the stiffness that doesn't go away until mid-morning; I can deal with that. What's difficult to deal with is the pain that has velcroed itself to my body and refuses to let up. So, as I hobble to the kitchen to make a concoction that kind of resembles coffee, I remember that I left my thyroid medication by the bed. I try to take it first thing in the morning because if I don't, I'll forget. So I hobble back to get the medication. Unfortunately, my dog has gotten up and he wants to be outdoors. So I turn around and as I walk on the lead weights that are my legs mouthing "ow" with every other breath, I put Buster outside and then start my trek back to the kitchen.

I forgot the fricking medication AGAIN.
Screw it. I'll take it later.
I'll live to regret those words.

So I start my coffee (and I use the term loosely) and get the non-fat creamer, three Sweet and Low and sugar free chocolate syrup so that it will resemble light brown milk. My daughter visibly shudders when she watches me make coffee! Even the people at Starbucks can't believe what they hear when I order.  Did I mention that my hands also hurt? As I get the cream out of the refrigerator it slips out of my hands and suddenly, splat! Yep, I've got cream all over the floor. Fortunately, Buster comes in the kitchen looking like he hit the lottery and at this point I let him lick the mess up off the floor. Then I remember that he doesn't digest milk well, so I know I'll pay for this later if I let him continue. I give up and throw the whole roll of paper towels on the floor and wipe up the cream.  At this point, I don't even want the coffee anymore. I head back to the fridge and get a diet coke. I need the caffeine.

I figure I'll go to the gym. I don't know why I do it. Everything I read says I need the movement and that it will help with the pain. If anyone says that to me today my answer will be, "bite me." I'm wiped out after I walk and I come home and go to sleep.  Now let me explain the trip to the gym.

I get in the car and pull out of the garage. Then I look down and I pull back into the garage. I go inside and get my phone and the gym bag. I can't remember anything today! Okay, I'm ready to go now. I get ready to pull the car out of the garage again and, I'm not. I have to take my pain medication otherwise I won't be able to walk. If I don't take it before I get there it won't kick in. Great. So I pull back in the garage, nearly forget to put the car in park, go inside and take the pain medication. I hobble back to the garage......

NOW I'm ready to go.

By the time I get to the gym I'm exhausted. I just want to go home and put the covers over my head. Maybe I just should have stayed in bed today. It isn't looking good so far but, I keep going and make to to the gym and walk. By the time I hit 3 miles I'm crying. Maybe I should just go home. 

I hate looking at women older than I am who are practically running. I am so envious of people that can walk without pain. As I walk I realize how much I took for granted. I took my health for granted, my body and my work for granted. I just wish I could go back a couple of years before the accident. It's very sobering and depressing to realize that you can NEVER go back.  But, I hobble on......

I get home and get back into bed and put the pillows around my head and that is where I have been all day and night. It's just one of those days where my mood has gotten worse with every passing hour. It's so frustrating to forget everything. I tried using the weekly pill dispenser but I forget to fill it and even when I do remember to fill it, I forget to use it. I even put it in my calendar on my phone but I forget to look at it. 

Maybe I should take a bath.

A couple of hours in the tub should shake off this mood.


If I could sleep I'd say tomorrow will be a better day.

But I probably won't sleep either.

By the way, I forgot to take my thyroid medication today.

Did anyone get the license plate of that truck that hit me?

Saturday, October 17, 2015


What is worse?
Or the thought of it?
I think it's a tie.

When you live in some level of pain on a daily basis even the thought of going to the grocery store is sometimes a bit overwhelming. Now try taking a long trip. I read through travel tips online and read books. I know in my head what to do and what not to do. Did I listen to any of it?


I have to admit that I started to hyperventilate at the thought of being on an airplane for 13 hours. I take that back. I nearly passed out. The thought of being cooped up in a cigar tube for that long just does not appeal to me whatsoever. I will talk myself out of having a good time just thinking about a plane flight.

I went to see my doctor and asked for a prescription of Valium. I truly needed it. I don't often ask my doctor for prescriptions like this. He knows me well and if I ask, well, he knows I've got a good reason for it. Years ago my former husband and I were coming back home and it was a real bad flight. I wasn't nervous....air turbulence happens all the time. It was when the pilot opened the cockpit door (many years ago wasn't it?) pointed and told the flight attendants to get down. He shouted that command. Then the plane nearly flipped on its side and people started screaming.

Then I got scared.

Ever since then I haven't loved flying. I know in my head that it is safer than a car but it's that darn control thing that continually pops up. People always say that "if it's your time there's nothing you can do," but my comeback is, "what if it's the other guys time?"  I'm almost positive that if I was in the cockpit I'd be fine but, well....ok.....I'm a control freak and it isn't going to happen. 

Most travel tips tell you to get the aisle seat. If that's where you feel the most comfortable by all means follow that advice. For me the aisle seat is next to death. I feel surrounded. I, personally, like the window seat. I look out and see endless sky and that makes me feel less encumbered. I know it's a pain when I have to crawl over anyone to get to the bathroom but I love looking out of the window. The other thing that is necessary for those in pain is to get a bulkhead seat. You can stretch your legs out and it makes flying economy bearable. 

It's also very important to stay hydrated. Dehydration makes your tissues more sensitive and since you can't take liquids past security I got a S'well bottle. They are a little costly but they are worth every penny. They do keep liquids ICE COLD for 24 hours. After I passed through security I went to the bar and had them give me some ice and fill it with water. It's nice to have water handy so you don't have to wait for the attendants and the beverage cart. I've heard that iced drinks aren't real popular in Europe so I figured this bottle would keep me sane and I wouldn't have to be always searching for ice.

I found a travel purse on Amazon. It was made by a company called Daymakers and it was their BeSafeBag. I has separate compartments for phones, tablets, documents and even RFID security. This purse was WONDERFUL and it feels comfortable over your shoulder. It wasn't heavy or cumbersome at all and I really had it filled.  I had a small issue arise and the company sent me another. It is rare that you find a company that stands behind their products; no questions asked. I would recommend them just like I do Costco and Nordstrom. Not many companies do this and they deserve a huge shout out. 

I've also found out that under no circumstances do you try to anticipate the amount of pain you will be in and bring everything under the sun to combat it. I have several tens units. That in itself is fine but I brought all three of them so I wouldn't have to continually charge them. In the event the converter didn't work I wanted to be prepared. I also decided to put a ton of makeup in the carry on, you know, just in case my bags got lost. I didn't want to be without that! Then there were the prescriptions of antibiotics, muscle relaxers, converters and adapters that also went into the carry on. 

Enter the carry on bag that weighed 20 pounds.

Now, lets talk luggage. Just because you can take up to 50 lbs. doesn't mean you should. I don't care if it has 2 or 4 rollers, when you have to roll those bags into the airport, combined with the carry on and let's not forget the purse that you've crammed your ipad, wallet, iPhone, documents and more makeup and prescriptions into you look like a pack horse. Also, you hurt like hell even before you get on the plane.

By the time I got to the gate I was in full snarl mode.

I tried to pack smart. I really did. I'm comfortably monochromatic so every black t-shirt I owned went in there along with some sandals, flats and tennis shoes. Also, I didn't need three pairs of jeans, shorts, sweaters and jackets in case it got cold and dress clothes complete with heels. Am I nuts?  I also didn't account for the gifts I'd be bringing back. So, there was the purchase of another small bag to hold the things I brought home. 

Let's face it. I totally screwed up. As I wheeled that bag through train stations and airports I was ready to throw it over a cliff. If I hadn't packed clothes I really loved, I probably would have. I didn't need most of the things that I packed. I didn't use most of the things that I packed. All I did was carry it around and cursed myself for doing it. I also didn't account for the fact that on a train it goes in the overhead compartments. I should have had my head examined. 

By the time I left I had made myself crazy and that wasn't necessary either. I was so concerned about what I might need that I totally buried the reason for the vacation. Did I need something to wear for every single day? No, there are laundry services. The only thing I did was make myself more work there and more work when I got home. 

Maybe I've been on hypervigilance for so long that I forgot how to have fun. I have realized that it doesn't do any good to overthink the process. Days will come and go and worrying about what might happen or how I might feel doesn't do any good. I don't need to take anything more than I absolutely need because it's a trip not a change in geography. I don't need to take everything I own....just in case. 

Always remember that you will have to lug around everything you pack. Even if it's from the car to the curb it will be too heavy for you. I still had pain and had to pace myself just like I do at home and it wasn't the end of the world if I had to stop and rest. There are long lines everywhere and it's imperative to take it easy. Just getting through customs can be daunting. The lines were VERY long. The best thing I did was to get the TSA PreCheck done. We sailed through and it was worth it. No taking off shoes and coming back into the country was a visit to a kiosk and then handing the receipt to the agent. Again, worth it. 

Have I learned anything about traveling?  Some things yes and others no. Type A squared and I just don't seem to get it. I need to commit to small suitcases and realize that the world won't end if I don't take a ton of know....for every occasion and every weather condition.

What didn't change?

I was always in some level of pain.

Same as home.

I over-thought the process.

Same as home.

I was overly concerned about what "could" happen. 

Same as home.

So what did I accomplish?


Saturday, October 3, 2015


I was so excited!
We could have an accurate diagnosis.
Then I thought about it.

I've gone to doctors that absolutely refused to write about Fibromyalgia in my charts. He looked right at me and said, "well, I'm not writing THAT down." I've been to doctors that have given me the "oh-suck-it-up" look and shrugged their shoulders. I went to a dermatologist because the skin was peeling off my fingers and, I kid you not, he walked out of the room and looked back at me and said, "you know, you do live in the desert."

Will one little code fix that kind of attitude?
You just can't fix stupid.

Health care has gone beyond terrible. Those who belittle and dismiss your symptoms as, "all in your head." The ones that tell you Fibromyalgia isn't real and they certainly won't write that down in your chart.  The ones that have you crying when you leave the office. They are also the physicians that have you doubting yourself and you start thinking about what you did to deserve this or, worse, what you did to yourself that brought this on. Then there are the doctors and clinics that will take thousands from you, knowing there is no cure, give you false hope and when things don't work tell you that you're on the right track.

Will a simple code fix all this?

Then, there's the other end of the spectrum. I've almost become embarrassed to say the word Fibromyalgia. People look at you like it's the garbage can diagnosis that some doctors have made it out to be. If they can't tell what's wrong with you....well must be Fibromyalgia. It may very well be just that......but it's the look that goes along with it that gets to you. It's the look of disdain or the just plain patronizing that gets to me. It's the almost pitying look that says, "well.....if you believe it....."  I'm really tired of doctors pulling that.

Let me get this straight. There is a code for being sucked into a jet engine (V97.33). There is a code for other contact with a pig (W55.49X???). There is a code for being struck with a turkey (W61.62X). It took this long to get a code for Fibromyalgia??????

So, back to the question.
Will the code fix it?
I'm not sure.

Whether they like it or not, Fibromyalgia is real and recognized. I just don't think that years of thinking that it's a problem of neurotic, middle aged women will go away quickly. There will always be doctors that are more interested in getting you out of the office than finding out what's really wrong. Having said that.......

I'm convinced that my dog gets better care than I do.

The vet comes in the room and bends down and pets him.

Calls him by his name and lets him know that she cares.

At that point my dogs tail is wagging a mile a minute.

If there's medication she explains how to use it and what it's for.

She really wants to get to the bottom of the problem.

Plus, she wants to know in a FEW DAYS if the medication is working.



Maybe I should go to a veterinarian.

My dog doesn't know how lucky he is.