DON'T MESS WITH MY FRIENDS

                              I believe in Karma.                                                                    

I started blogging in 2009 after I got a diagnosis of Fibromyalgia. At that time it helped me turn what I considered a horrible life event into something positive. I learned I could deal with the pain and life events that this disease heaped on me.

Then I started looking and found other bloggers that had the same issues. I found people that became my friends. Even though I'd never met them face to face, we knew each other.

                                                          Soul to soul.

That's not something I have ever taken lightly. These people bared their souls on their blogs and I found people that had my back. Some, sadly, are no longer with us. Laurie Fessler of Hibernations Now and Lynn Marie of A Journey of a Fibromyalgia Fighter and two friends that we lost. Some I still know and have remained friends with through Facebook and Instagram. 

One of these is Jolene Kari Llewellyn. She started a blog called Graceful Agony. Her blog particularly struck home with me. I love her writing style and how she supported all of us who needed support. Her followers could always depend on something that would help them through a tough day. We are still friends and I want you to remember something: I've never met this woman face to face. No matter what I will always have her back. 

If she reaches out? I'll be there.

She reached out to me and let me know that there is a book out there named Graceful Agony. Yes, there's a colon and then some addition in the title. Ok, so Jolene never wrote a book, but she put her heart and soul into the Graceful Agony Blog. She still has the X(Twitter) and Instagram and Facebook handles. We have a support group on Facebook with that name.

Why am I irritated?
First: she's hurt.
Second: Too much of a coincidence to be a coincidence.

If I was writing a book the last thing I'd do was take part of the title of one of the blogs I follow. If it was something I felt passionately about, I'd contact the owner and get her blessing or have her write a forward. 

Or something.

I wrote this on the Facebook post of the author and got a snippy response back. I'm paraphrasing here... Yeah, she knew about it but since she's in Canada it was not a big deal plus Amazon ok'd the title so ......basically she told me to take a hike and then blocked me.

Real mature.

Needless to say my friend is beyond heartbroken to see her life's work get taken from her. I hate to see her hurt so I'm letting people know my opinion about this book.  If you look up Graceful Agony you'll know what I'm talking about. Since her blog was followed is it too much of a coincidence to be a coincidence?

 I think not.    

(Just as a disclaimer the opinions stated here are my own and  are not intended to malign to disparage.)                                                                               

                                                                                                                                                                                                                                                                               

                                                                                    

ESREBOXETINE........GOING OUT ON A LIMB HERE

In 2009 Pfizer was in stage 3 of clinical trials.

The results were promising.

They dropped it.

2009????

I've always believed that Fibromyalgia was not on anyone's top ten list. It's been either a garbage can diagnosis or just totally dismissed as an illness. I guess there's just not enough money to be made in treating patients that live in pain. 

Please forgive my cynicism. I used to say that if doctors got the crap beat out of them with a baseball bat and had to live with that pain for weeks, months and years maybe then they would understand what living with chronic pain is like. 

Esreboxetine.

Ever heard of it?

Neither had I.

Researchers published that it linked this drug to reductions in pain and improved patients scores on the Fibromyalgia questionnaire. Even though this drug was thought to be promising and was through phase 3 of clinical trials neither Pfizer or any other company went forward with it.

Until now.

Axsome Theraputics plans to submit a new drug application for AXS-14 later this year for a potential treatment of Fibromyalgia. It will include the phase 2 and 3 data that show a significant improvement compared to the placebo. 

The best part?

Not the fact that it will help patients.

That would be too easy.

Try Axsome had to pay Pfizer 3 million bucks.

Plus, Pfizer gets 8 million of Axsome stock.

But wait!

There's more!

Pfizer gets first right of negotiation in future transactions regarding AXS-14 and an antidepressant medication they castoff now called AXS-12.

Not bad for a castoff drug they didn't want.

I have questions though. 

Reboxetine is for treating major depression. So....where does esreboxetine fall in this category?

Reboxetine is not available in the US but it is in Europe and from what I read there are a ton of icky side effects. Pfizer successfully used animal models but human one were not as successful. I'll list the link below to show why it is so controversial in Europe.

But back to esreboxetine....

Will it work?

I don't think the votes are in yet.......

Back to square one.

Psycom.net/reboxetine

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.

KRATOM UPDATE

What is it?

How is it used?

Is it safe?

I don't know.

I wrote this about Kratom a couple of years ago and it seemed that it's a good time to bring it up again.

I was reading about the latest thing to pop up about painkillers. People on forums and Facebook have been talking about it.

And they've been trying it.

Ok....first things first. What is it? Kratom is from a tree or, more specifically, the leaves from the mitragyna speciosa tree. The trees are indigenous to Southeast Asia and have been used in traditional medicine for centuries. Thailand has banned its use and there are several states where Kratom is also banned. It's been used in the management of chronic pain and it behaves like morphine. 

The DEA lists Kratom as a drug of concern.

One thing they did find was that Kratom helped the withdrawal symptoms of opioid dependence. When Kratom was quit suddenly the side effect was diarrhea and a runny nose. Considering what the withdrawal symptoms of narcotics can be I would think that Kratom would be studied. 

The other thing is that Kratom doesn't have the respiratory depression that opioid have. When you have a medication that helps pain without the risk of overdose it sounds like it should be studied. Why haven't the pharmaceutical companies looked at it?

Or have they? GlaxoSmithKline looked at it in the 60's but nothing came of it. Let's face it, something must be off either in the delivery or the drug itself. They could make a ton considering the opioid problem in this country. 

It can cause drowsiness, fatigue, nausea and stomach discomfort and constipation. It has the potential for abuse when you exceed the recommended dosage. If you decide to use this be very sure that it won't interact with medications that you are taking or have taken. Be very careful. Just make sure you research it very carefully before you make your decision. 

Is it addictive?

I don't think anyone knows.

There are animal studies that show that a tolerance can be built up over time.

And the directions state it can be habit forming.

That kind of signals addictive to me.

But what do I know?


DEA INFORMATION ON KRATOM

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.