I FEEL BAD FOR LADY GAGA

When someone famous
is diagnosed with Fibromyalgia
we jump on it.
Why?

If someone famous has it we will be able to validate our own problems with Fibromyalgia. Most people think this is a garbage can diagnosis so if someone like Lady Gaga has to cancel tour dates due to the pain people will have the light bulb moment and think to themselves, "maybe they aren't crazy." 

Me?

I just feel bad that she has to go through this.

We're still smiling through the tears. When people ask how we are we still say, "fine." We still get irritated at the Lyrica commercial and we still are disbelieved by doctors. We hesitate to talk about the tons of symptoms that pick and choose which day they will decide to appear. 

We even doubt ourselves and each other at times.

No matter what I still hate feeling out of control in my own skin. I hate waking up in pain and I hate to go to bed in pain. What I hate even more is appearing weak. I hate the fact that I have to say that I have Fibromyalgia. When people ask what it is, I hate telling them. I hate having to explain what the pain has done to my life.

We now have limitations and before there were none. We now look at life in a totally different way. Even when the pain levels subside there is a place within us that knows it's only a matter of time before it will rear its ugly head again. The pain and fatigue makes you retreat and the feeling of uselessness comes over you like a wave crashing on the shore.

Can we ever be the same again?
Yes and no.

I am back at a place where the pain is strong and intense. It threatened to place me back in the black hole; a place I don't ever want to be again. I escaped the dark but it was close.

What was different this time?

Right now I'm in a place that I haven't been in many years. I'm feeling strong; definitely not physically strong but mentally strong. I'm feeling a strength of purpose and it keeps me from going down in depression. I'm walking every day and it's helped more than I can say. It takes oxycodone to do it but whatever it takes is what I'll do. I wake up in the morning in pain...that hasn't changed but I have realized that the pain isn't going to go away so I need something to overcome it. 

Let me make this clear. 

I don't believe that the walking will overcome the pain but what it does is overcome what the pain can do to me.

I'm not going to stand on a soapbox and say this is the avenue for everyone. What I will say is that there's a place in all of us where we can go and be strong. I know this because we have the strength to endure the kind of pain that we do on a daily basis. We all have a very high pain threshold and people don't understand that.

But we do.

So what I'll say is that I pray for all of us to look deep inside and find that place where pain cannot touch us.

It's there.

I know it.

MOVING DAY? TRY MOVING MONTHS.

Sometimes it's not smooth sailing.

Sometimes the waves are huge.

Sometimes the waves just slam you on the shore.

It's been quite some time since I've written anything. I've been exhausted; mentally and physically. In the last seven months our home was put on the market, sold, fell out of escrow, sold again, fell out of escrow again and then sold. Really sold. This is a process that I wouldn't wish on my worst enemy. I still haven't recovered and the move was completed over a month ago. 

The process started last June, 2016 when we listed the home. The home sold pretty fast so the packing started. I figured  that I'd pack up some of the things that I didn't use that often. After all, I'd be unpacking in a couple of months. 

Right?
Not so fast.

Then we had a buyer who was perfect. He was a contractor and had all sorts of plans for the home. He had his house in escrow and he wanted to close quickly so we went crazy packing up everything only leaving the things we'd absolutely need for a few weeks. After all, we'd be unpacking in a few weeks. We were assured that his buyer was solid.

Or so we thought.

The NIGHT before the buyers documents were to be signed we found out that his loan had been denied. Un-fricking-believable. It took a week to process that bubble being burst. We decided to unpack and put the home back on the market in the spring. I didn't unpack everything. I figured that some of it I really didn't need and it would save time later.

Right.

In December that buyer came back. He had sold his home and still wanted ours. The little sticking point? Now we had to RE-PACK the house and find another home that we could close on quickly. Like in a month. At this point I'm ready to fall over but there is no time for that. We found a place that we actually loved and all the dominoes fell perfectly.

What wasn't perfect was me.
But, at least it was over.
January 17, 2017.
It was a LONG 7 months.

I couldn't do one more thing. I've pushed my body to its limit and it was too much. There is something about stress and how it affects your body. When Fibromyalgia is involved, however, all bets are off. You cannot do this without stopping to decompress. 

The problem is that I have very high standards for myself. My personality has really shown through during this move. I've become very pissy and I wanted things done. Did I also mention that I wanted it done yesterday and preferably in alphabetical order? Oh, come on.....who the hell puts moving boxes in alphabetical order? I ordered labels from Amazon and printed out the contents of each box. Try doing that for over 200 boxes.

The other thing I can't do is tell everyone how bad I feel. It becomes a broken record. I'm sure they get tired of hearing it and I really get tired of saying it. There is something to be said about smiling through the pain. Just because I sound fine doesn't mean that I don't spend most of my day in pain and exhaustion. What I have is variable. The symptoms vary from day to day and sometimes from minute to minute. Since the move we can just add second to second. 

I'd like to get out and do things. I'd like to start working out again. There are a lot of things that I'd like to do. I just don't have the inclination or the energy to do them. A lot of times, since the move, getting out and doing things can reduce me to tears before the end of the day. There isn't a place on my body that can be touched that doesn't cause pain. It makes me want to hide away. 

Once the muscle spasms hit it's time to take the medication otherwise sleep will be impossible and, of course, that exacerbates the pain. It's a roller coaster and you wish to God you could get off. It becomes your prayer late in the night. Please let me get off this roller coaster. 

Please.

Just when I thought there would be a break in all this the humidity hit with a vengeance. I don't do well when the rain rolls in and an increase in the humidity and barometric pressure causes havoc. So, it's back to feeling like crapola.

I tried going back to work for a couple days a week. I really do miss new home sales. I started with a temp service that staffs sales offices with people that have new home experience for the agents days off or vacation days. I loved it but my body didn't. I used to pride myself on my intelligence. I could look at proformas and spreadsheets and loved to read the fine print. Contracts were my special love. I could rip them apart and put together something to behold. Now it seems like someone smeared oil over my lenses. Everything looks fuzzy. I no longer have the patience or intelligence to read and retain what I've read. I read and re-read. I stare at what I've read and get the deer-in-the-headlight look and frantically search for a remnant of the former woman with the near photographic memory. What is this insidious disease that robs you of your intelligence and leaves a fairly intelligent woman searching for the right words, forgetting where she put her keys, sitting in the car and wondering where I'm going.

I found out that I need to make lists.

There is a reason that that there are lists.

Three most stressful things in life?

Death.

Divorce.

Moving.

I've found that moving may cause the other two on the list.

I never want to do it again.

Oops......

I said never.........

Drat.

WHICH MASK TO WEAR TODAY?

"We are so accustomed to disguising ourselves that in the end we become disguised to ourselves."

Francois de la Rochefaucauld

This quote speaks to me so much. Maybe it spoke to me because I've been Type A squared since birth. Maybe it spoke to me because I've been in sales with home builders for many years. Maybe it spoke to me because as a by-product of new home sales, I've been a chameleon for so long that I don't even recognize myself anymore. Maybe.......maybe.........maybe.

Maybe, just maybe, it spoke to me because of the pain.

It's so true that we disguise ourselves. Whether we have a chronic illness or not we usually never tell the truth when someone asks how we are. I mean, who really answers the question when someone asks how you are? It's really bad when you have chronic pain.

"How are you doing today?"

Not good.

I feel like crapola.

All I want to do is sleep.

This sucks.

My life is falling apart.

I'm in huge, big time, pain.

My hands hurt.

My head hurts.

My back hurts.

I'm not sleeping real well.

My whole body hurts.

Every bone in my body hurts.

I ache.

I'm tired.

This disease is destroying my life.

I feel horrible.

I can't seem to get out of bed.

I can't concentrate real well today.

What did you say?

After a while no one wants to hear it anymore.

Let me clue you in on a little fact.

After a while we don't want to say it anymore either.

So we say:

I'm okay.

Or we fake a smile.

I'm just a little tired.

Or we fake a smile.

It could be worse.

Or we fake a smile.

Today's not a real good day.

Or we fake a smile.

Or we burst into tears.

And we still try to fake a smile.

Or better yet....we just don't say anything.

We sugarcoat it.

Anyway, we disguise how we feel. We disguise the pain that we feel. We disguise the guilt that we feel. We disguise the depression. We disguise the lack of sleep. We disguise the embarrassment over feeling sick yet again. We disguise the forgetfulness. We disguise everything.

Is it any wonder that we don't know who we are anymore? Let me see, I want a ticket to La-La land and I want to take up permanent residency there. I'm also incognito. What else?? Is it really so hard to believe that someone can feel so unbelievably awful all the time? Maybe that is why this disease is so misunderstood. I think it might possibly help for people to understand how we feel if they can relate to the worst possible flu that they've ever had. The flu that made every bone in their bodies ache with an intensity that was staggering. The kind of flu that made it impossible for them to leave their bed for a few days. Now try having that same feeling not for a day, or a week or a month but have that feeling year after year after year. Do you think they'd understand Fibromyalgia then? How about those doctors that think this is all in our heads? Let's take that old baseball bat and beat the crap out of them and continue to beat them every day for a few years. Do you think they'd think we were crazy then? Do you think people would finally get it?

So, what other words can I come up with?

I'd like to say my favorite word but  this is a G-rated post.

I'm just sayin........

A CATAGORY 5 HURRICANE

I don't know if what I've been through,
can be called a flare.
A flare?
It's more like a bomb went off.

This has been a difficult post. I want to convey how bad this flare actually was and balanced so that the people I care about don't worry. The worst has passed but I've never, since my diagnosis, been through a time as bad as this one. Fibromyalgia is sneaky. You can be fine one day and crash the next. Heck, you can be fine one minute and crash the next and that is just what happened to me. I've had bad days and fair days and semi-ok days. So what's the big deal about this time? What happened? I was blindsided. 

I went into denial. OK...It will be better in a few days. Then I went into a soul sucking vortex of pain and the inevitable depression that kind of pain brings with it. In other words, the twins visited with a vengeance. Maybe I should have gone to the doctor looking like I felt; something the cat just dragged in the house, something that would scare babies and small children. Maybe I shouldn't have tried to suck it up and put on my big girl panties. Maybe, maybe, maybe. I think I'm conditioned not to admit this kind of pain. The pain that makes me feel weak.

So what did I do?
I went off the grid.
I didn't want to go anywhere.
I didn't want to see anyone.

I tried the doctor. His answer? Just up the opioid. I didn't want to go there. They truly scare me. I respect the power of these medications and I don't want to go down that slippery slope. If I can't deal with it on 5 miligrams then I will just have to try something else. Binge watching Two and a half Men, Big Bang Theory, Criminal Minds and Blue Bloods? Nope. Didn't work but it's a pretty good distraction. Let's try something else.

Let's start with balneotherapy. Ha! I got in the bath with Epsom salts.

Usually I can stay in the tub and get through the aches. This, however, was not the icky ache. This was the voodoo pain that was stabbing me in every joint that it could find. 

And it didn't let up.

When a flare like this hits it just doesn't go away. From the moment we open our eyes to the moment we close our eyes we're engaged in battle. We all think we're wimps but nothing is farther from the truth. We battle depression that springs from pain. We battle constant pain that ranges from throbbing to gut wrenching. We battle ourselves because we constantly think that we're inadequate. Being in jail handcuffed and bound is so tough to take. There will be limitations on body and psyche. 

Limitations?
Throbbing?
Gut wrenching?
I flew by that about day 5.

I decided to put the covers over my head and just give in. There is a time when it's appropriate to surrender and though that truly goes against my nature, I did it. I really understood how people can just give up. Now, I do believe that attitude can help or hinder just about everything in your life. It can push us beyond "the can't." I understand that. But, there are times it's hard to find no matter how much we try. I was in one of those times. I threw myself every pity party there was and it still didn't help. I tried to tell myself that if I would just improve my attitude then my symptoms would go away. 

They didn't.
It made me think that I was the master of my own demise. 

I think the problem is that there is no middle ground. We are not allowed to be tired or have pain. We're supposed to just suck it up and multi-task our little stressful lives to the fullest. We're supposed to be tough and push through pain and fatigue. It's not too much to ask is it? Life is supposed to be lived and if we can't do that it's because we don't have the emotional strength to deal with pain. People think we have more of a defective mindset rather than a real illness. If you are ill and you give in to it....you are weak. Now, even if the pain is severe you are expected to just take a Tylenol and deal with it. Well, that's fine for the short term but evidently the powers that be figure that, for the long term, liver damage is better than addiction. They can't even find a middle ground.

I read about how to cope. 

I know it.

I use it.

But sometimes it just doesn't work.

Sometimes you just have to bow your head...

Say a prayer....

And weather the storm.

KETAMINE FOR FIBROMYALGIA? NOT YET.

On the street it's called Special K.

It's a horse tranquilizer in veterinary medicine.

It's a money maker for chronic pain.

I get it. Sometimes the pain gets too much and we're at the end of our rope. We want to reach for something, anything that can promise relief from the pain. We just need to be careful that we are not reaching for something that can do more harm than good.

Ketamine infusion therapy is big business in the chronic pain world. A single infusion can cost $2000 a treatment and, believe me, the recommended course is definitely NOT  a single treatment.

Ketamine is used to produce a loss of conscienceness. It's used as a general anesthetic but because of the hallucinations that it can cause it's not the primary choice. It is used by compounding pharmacies as a cream with lidocaine and ketoprophan as a topical pain reliever.

This drug is no joke.

It increases your heart rate and blood pressure. It can cause hallucinations, dizziness, nausea, blurred vision, nightmares, memory problems and if used long term liver abnormalities. It induces a state of disassociative anesthesia. 

Scary.

Years ago a study was done with 34 Fibromyalgia patients. They got a low dose Ketamine infusion followed by a dextromethorphan treatment. 19 responded to neither drug, 10 were favorable to both, 3 were helped by the ketamine but not the dextromathorphan  and 2 were helped by the dextromethorphan but not the ketamine. Link to study

There are sites offering Ketamine therapy. Everything about Ketamine states you should be monitored closely due to adverse effects but there are places giving you this therapy on an outpatient basis. Now they do tell you to stay with someone so if you have any ill effects they can get you to a doctor. Gee, that's comforting. I may have someone watching me who hasn't got a medical license and they are the ones to watch for adverse effects?  They also tell you that it may not work and this is a totally elective therapy. 

It gets even better. There is a Ketamine Coma Therapy being offered in other countries. It is given in extremely high doses so that a coma is induced. This, obviously, is not approved by the FDA. 

Back to the infusions......they tell you that if you want it YOU NEED TO SATISFY YOURSELF by the research YOU DO through search engines. In other words, we just give it to you and if there's a problem you should have done better research. To me, that borders on negligence. We need qualified people that will tell us the realities of medicine and what it can do. We shouldn't be the ones doing the search and then telling the doctor it's ok. 

It also tells you tough noogies because you may elect to proceed knowing it may have no benefit. They also tell you the greater number of infusions you have the greater the benefit. 

At 2 grand a pop that sounds like double speak to me.

Just keep paying and pray it helps.

I'm not saying it may not help some people. It might. 

Everything in me shouts NO.

Everything I read about this drug screams "dangerous in the wrong hands."

It's a street drug that packs a wallop.

It can kill you.

Please be very careful if you are going through with this therapy.

You need to be watched carefully.

Personally?

I wouldn't do it.

*** This post was written about a specific place and person which shall remain nameless. There are legitimate uses by doctors and hospitals. 

THE JESUS SHOT.

If it sounds too good to be true.

It usually is.

And now, they add Jesus to the mix.

I'll never understand people who, for their own benefit and marketing purposes, throw the name of Jesus into the mix so people will (excuse the word) flock to their practice and get the shot.

There are millions of people in pain and, if you are Christian, he's marketing right to you.

First of all, let's do a little background on the doctor. His name is John Michael Lonergan. He is approximately 67 years old and spent part of those years is prison for mail fraud, tax evasion and health care fraud in Ohio. His medical license was permanently revoked in Ohio and Oklahoma gave him a provisional license which requires supervision. Now, it seems he's practicing without supervision.

Hmmm.....sounds legit already.

Now, he's in Oklahoma peddling a lovely little shot that will cure you from chronic pain. 

Oh, and that will be 300.00 .....

Dr. Mike...doesn't that sound so friendly and helpful?

No one seems to know what is in the injection. Why, in heavens name, would you EVER inject yourself with something when you don't know what's in it. This injection will cure all ailments, not just chronic pain. 

People in chronic pain are usually desperate and will try anything for relief. This is a predator that is injecting people with God knows what. He's misrepresented himself as part of the military and misrepresented EVERYTHING ELSE. He claims he was in the special forces but no one can seem to find anything about him and he was investigated about stolen valor.

It can't be substantiated but a Dr. Schrick told reporters that is a mixture of Kenelog, Vitamin B12 and dexamethasone. Oh, and it had another less exciting name: inflamation prototcol. It is very frightening to me that people will try anything without thoroughly investigating it first. If the doctor won't tell you what's in it you shouldn't be letting him inject it into your body. Look up the side effects and decide what is best for you and discuss it with your doctor. Speaking of doctors; look up yours and make sure he has an active license and is in good standing with the state medical board.

It's very sad that some people will use the name of God just to enrich themselves.

Dr. Lonergan? 

He works at the Priceless Beauty Spa.

Oh yeah....he can cure chronic pain.

And I want to be an astronaut when I grow up.

If it looks like a duck,

Sounds like a duck.

Quack.

CYMBALTA, SAVELLA AND LYRICA. THE TERRIBLE TRIO

I've always said....

it's not what they tell you....

it's what they don't tell you.

I'm as guilty as the next person. When a doctor prescribes a medicine I usually take it, however, there are a few of them that I haven't. Cymbalta and Savella were two of them. I know myself and I know that if the side effects are icky.....well, I'll quit. The problem is that we've become anesthetized to prescription medication. Again, I'm as guilty as the next person. We need to remember some of these medications are POWERFUL.

So I started looking.

I've included the sources at the bottom of this post. I was pretty amazed at what I'd found. What amazed me the most is that the FDA seemed to chide Eli Lilly (the maker of Cymbalta) about the fact that they had not designed a safe protocol for the discontinuation of the medication. They also don't tell the doctors how severe the symptoms of that discontinuation can be. 

Now, the class action lawsuits are coming out.

What? You mean you didn’t read the fine print?

Ok…we’ll settle. My bad.

You can't quit either drug cold turkey, hence my reason for not taking them. The problem as far as Cymbalta goes is that it only comes in three dosages; 20mg, 30mg and 60 mg. Plus, it is a capsule so you can't cut it in half. You are advised against opening the capsule so how do you know that you supposed to wean off slowly? Who would think to do that?

I am not coming against anyone who chooses to take Cymbalta or Savella. These medications are approved for Fibromyalgia and for anyone who has a depressive disorder. All I am saying is that people should be aware of side effects and what happens if you stop taking it. Stopping doesn't necessarily mean after weeks or months either. It can be after one dose but the longer you take it the worse the symptoms could be. 

What are the symptoms of withdrawal?

Actually it's called Cymbalta Discontinuation Syndrome.

Brain zaps that feel like an electric shock, suicidal thoughts, nausea and vomiting, headache, nightmares, diarrhea, excessive sweating, involuntary laughing or crying, tinnitus (ringing in the ears), extreme mood swings, paranoia, confusion, limb pain, fatigue, insomnia, anxiety, agitation, hypomania and seizures.

Discontinuation can be severe and extend for weeks and even months.

With Savella, there were adverse reactions during the clinical trials.

Again, I'm not coming against anyone who chooses to use these medications. Your doctor thought their use would be in your best interest. I just think all the information should be on the table. Some people may have no trouble with discontinuing these medications....others may be blindsided.

In the sources below, I also added all the information on Lyrica. Commercials make everyone think that you can take a pill and everything will work out and you'll be happy. Just for the record: I hate that commercial. I'm not one of those people that are suspicious of doctors and conventional medicine. Medications are necessary but just have all the information so you can make an informed choice.

After all....

If Eli Lilly won't tell you.......

The FDA will.......

In some archived obscure document......

Somewhere........

But I found it.

The sad part is?

The only one who will win will be the attorneys.

Sources: 

http://www.fda.gov/downloads/Advisor.../UCM172866.pdf


http://medlibrary.org/lib/rx/meds/savella-7/

                        http://www.accessdata.fda.gov/drugsatfda_docs/label/2009/021446s013s014lbl.pdf