CAN I EVEN REMEMBER MY OWN NAME?

I am truly Miss Erable. 

Not only am I in pain.

But my brains are fried.

I had the greatest start. I got a call from Tonix Pharmecuticals and spoke for about 45 minutes with Dr. Seth Lederman. He's the CEO of Tonix and it was absolutely an amazing phone call. 

More on that in the next post.

Then, I realized my real estate license requires education within the two year of the four year period. Now, that means I have to sit in class for 3 hours..... and I need to do this for a total of twelve hours.

First of all, I hate sitting in classes. It hurts because the chairs are hard and by the time I get up I can't walk. The pain is shooting down my legs and I'm crying because I'm only a quarter of the way done.

Oh my.

But I've come to a decision. 

I'm making an appointment with a neurosurgeon. I always said that when I could no longer sit or stand without pain I'd give in and do something about my back. I can handle the Fibromyalgia pain but the back pain is beyond handling anymore. So I'm making the appointment to see what needs to be done. Years ago the odds were not that good that they could repair my back and have the outcome favorable. 

Hopefully, things have changed.

So between the back and the real estate classes I haven't had the time or the motivation to write about the wonderful research that Tonix Pharmaceuticals has done.

And it could be a game changer.

So off to more torture tomorrow.

Did I mention that I also missed the cutoff for my classes?

That's a lovely little $100 fine.

Great......

THE YUCK FACTOR

Well,

it seems like it's back to the drawing board.

Let's hope this works.

I'm really sick of going to doctors. I guess what I mean to say is that I'm sick of feeling so lousy that I have no choice but to go to the doctor. I have to say one thing. I do have a great doctor. He's very curious and he believes me when I tell him that I feel lousy. This, however, means going for more blood tests.

Do I have any blood left?

After 17 vials...........

Evidently, my thyroid is still borderline. 

The autoimmune thyroiditis is in full force.

Everything else? Right on target.

However, they found a nodule in my thyroid. So now I have to go through another ultrasound and then if it's growing there's another fun test. A biopsy. If that happens I think I'd actually be relieved. At least then I'd know why I feel the way I do. 

The problem is the symptoms are so intertwined.

I don't know if it's the thyroid or the Fibromyalgia. 

The fatigue is overpowering. I won't even count the pain because that is always with me. It's just that my hands have hurt more than usual. I don't think its the Fibro because I just feel so..........

Different.

I gave in and went to the endocrinologist. More blood work and I'm back on the Armour Thyroid. I did feel better on this when it was prescribed to me a year ago. Hopefully this will pull me out of the constant feeling of yuck. Why they felt the need to change it is beyond me. 

The symptoms of hypothyroid and Fibromyalgia are SO close. How do I know this isn't Fibromyalgia? For one thing.....my hair. It's very dry and thinning out. The doctor said the Cytomel will do that. Why in the heck did they ever prescribe it? I know it's more precise than Armour Thyroid but it can't be that big of a difference. The other thing is that my skin is much drier. 

Try peeling off the tips of my fingertips. 

The scary thing is that no amount of lotion or cream would stop it. I even got steroid shots but that didn't work either. The only thing the shot seemed to do is make me gain 5 lbs. overnight and that does not work for me. Finally my manicurist gave me some lotion from Vietnam and, believe this, it helped it within three days. Three days later.......it was GONE.

Now I can get my nails done again. 

That problem is fixed.

Now........

All I care about is that I lose weight......

and the fatigue........

and the joint pain.........

and the weight........

IS IT HOT ENOUGH FOR YOU??

It doesn't make any sense.

I live in Las Vegas.

And I HATE the heat.

I have to say one thing about Fibromyalgia. The internal thermostat definitely doesn't work! I don't like it too hot and I don't like it too cold. I don't like it real windy. I love the rain but I hate the humidity. 

I'm also a pain in the ass.
Anything else I don't like?

But mostly, I hate the heat.

Living in Las Vegas in the summer is like standing in front of a hair dryer. Just turn it on the hottest setting and point it at your face and voila! You're in virtual Vegas. We are in triple digits and I'm just not ready for it. The way I see it is that you can put on sweaters and jackets to stay warm but you can only strip down so far. 

Hot is hot.

And it sucks.

I guess we just can't regulate our thermostat. Usually we have problems with one extreme or the other. As you can guess, mine is the heat. I do much better when the weather is cooler. True to the general theme of Fibromyalgia, other people cannot tolerate the cold weather. Most of us do agree, however, on humidity. We don't perspire as easily either. Maybe that's why the heat really gets to me. Could this be due to my thyroid imbalance? Or is it just another symptom of our hypersensitivity?

Basically, it comes back to that pesky hypothalamus. The HPA axis seems to be popping up everywhere.  I guess the autonomic system is out of whack. Everything seems to point to a problem in this area. What triggers it is anyone's guess but when you trace back the symptoms that we have........well, it all seems to point back to this area of the brain. 

We have malfunctions in the two key areas of the brain. The autonomic system and the HPA axis. These two areas are the major pathways for the bodies response to stressful situations. Considering that we don't handle stress very well...........well, there you have it.

Here's what I don't get. 

What pioneer rode across the country.....in the summer........

Settled on what is now known as Las Vegas......

And said.........

"oh, this is PERFECT....let's settle here!!???"

But back to the heat.

I hate it.

I'm sitting right in the middle of fort stinking desert.

And it hasn't even gotten started.

Hello to Las Vegas in the summer.

ONE MORE PIECE OF THE PUZZLE REVISITED

Flexeril.

Who knew?

I got an email from Tonix Pharmaceuticals and they offered me the opportunity to interview the doctor that is the head of the pharmaceutical company and I could post the interview on my blog. This is an exciting opportunity for me. I really have looked at this trial. When I went for a clinical trial here in Las Vegas I asked if it was the TNX102 trial. If it had been, I would have jumped at the opportunity. 

I am reposting this and look forward to the interview with the doctor. 

Tonix Pharmaceuticals is starting Phase 2 clinical trials for their form of a very low dose cyclobenzaprine called TNX102 SL. It targets pain and the inability to get restoration from sleep...well, because we don't. You can't get something from something you don't do. It seems that the sublingual form is rapidly absorbed by the bloodstream and is rapidly excreted from the system.

Sounds like a win-win.

This study has approximately 120 patients taking either a tab or placebo at bedtime for twelve weeks and then measuring the change in pain intensity. The first phase of the trial has already been concluded with a reduction of pain, pain sensitivity, fatigue and mood. The study chair for this trial is Dr. Daniel Clauw, Professor of Anesthesiology, Medicine and Psychiatry and Director of the Chronic Pain and Fatigue Research Center at the University of Michigan. 

Tonix calls this protocol BESTFIT. BESTFIT stands for BEdtime, Sublingual, Tnx102sl, as Fibromyalgia, Intervention Therapy. Cute, huh? 

Cyclobenzaprine is an FDA approved drug that treats muscle spasms that is associated with musculoskeletal conditions. It's been prescribed off label as a sleep aid. What I didn't know is that there isn't any benefit with this drug after two to three weeks. Actually, what is said was "the evidence of effectiveness for prolonged use is not available." Everything I've read says that this drug should not be used long term.

??????

Pain managers have been giving it out and for much longer than two to three weeks. 

There are not many treatment plans for us out there. The ones that are there have some side effects that make the treatment worse than the affliction! Add to the mix that the treatments don't work for all of us. 

This study is being conducted at approximately 15 sites throughout the U.S. I can't wait to see the outcome but the initial results were promising.

Like I always say.

It can't come soon enough.

We watch and wait....

again.

Until we find the missing piece of the puzzle.

THE FIBROMYALGIA SERIES PART A

There are so many things we can't do. 
But by the end of this long word.....
there must be quite a bit we can do.

A - is for alive. We can be thankful every single day that we are alive. No matter how bad it gets, it's better than the alternative.

A - is for acceptance. This has changed our lives, no doubt about that.....however, we can still lead full lives. Our body just will remind us we can't go every day at full speed.

A - is for adapt. We've learned to accomodate our lifestyle to our bodies needs. It's ok....we can still find something to do to help others navigate this "thing" called Fibromyalgia.

A - is for authentic. The best thing we can do is be our authentic self. I can tell you that Fibro helped me find that. Being in sales I had been used to being a chameleon. It tends to cloud who and what you want. It took awhile but I no longer feel I have to please everyone else BUT me.

A - is for achievement. I was watching Dancing with the Stars last night and Amy Purdy is truly inspiring. For all her limitations she became an amazing, accomplished woman who put her disability in it's place. Look at what she has achieved in her life and then tell me that we can't do it because we hurt.

A - is for abundance. God's grace through adversity is given to us in abundance. Another thing I've always said, "suffering builds character....ok.....I've got enough character." (And yes, I have trouble sometimes with this one.)

A - is for appreciative. Take the time to appreciate what you do have instead of grumbling about what you don't have. (Yes, I've had trouble with this one too) When I'm reminded of all the good things Fibromyalgia takes a back seat.

A - is for active. There are times it's real tough to get moving, but we must. Those aching, stiff muscles need exercise. Now before everyone gets riled up, exercise does not mean an hour in the gym lifting weights or sweating on the elliptical trainer. It means movement. Staying in bed is good for the occassional pity party. I've done it myself and, to my way of thinking, feels good every once in awhile BUT those achy muscles do need to move. 

A - is for accomplish. There is no limit on what we can accomplish. Chronic illness is not a death sentence. We may need to change our outlook but we can have a fulfilling life.

A - is for aware. We need to stay aware of our bodies and understand what it is trying to tell us. We can't push too hard or we will pay. (I've had trouble with this.)

A - is for affirmation

A - is for attitude. Attitudes can do a lot. It can give us the determination to push through the pain to find what this life has in store for us. It keeps us happy and grateful. When the proverb says, "laughter is the best medicine," they weren't kidding. Do it. It works wonders.

A - is for amazing. Look up in the sky. Watch a baby's face full of wonder. Look at the sunset. See creation for all it's glory. If you can't go out and see it, see it virtually. This world is amazing and it's waiting for us.

A - is for almost. Even though I'm writing about what we can do, I fall short of it. I think we all do but reminders are good. They help us make it through another day.

A - is for AWESOME!

As I've said,

Fibromyalgia isn't for sissies.

We're tough,

We're strong,

As yes, we are chronic illness,

But.....

We are awesome!!!

THE FIBROMYALGIA SERIES PART I

It's Fibromyalgia Awareness month.
Invisible?
Yes, we are.

I - is for Invisible Illness. We look fine so we can't be sick. It's those lovely little Lyrica commercials that make Fibromyalgia look like a pesky little bug that we can flick off our shoulder and, voila! Life goes back to normal. I don't know whether that commercial has helped us become more visible or it's hurt the cause.

I - is for isolation. Because we don't know what the day will bring we tend to feel isolated. Chronic pain brings it's own type of isolation as well. I know that I get tired of hearing the question, "how do you feel?" I can only imagine what the person asking the question must feel like. I dread giving the answer and I'm certain they dread hearing it. Again.

I - is for impatient. I get impatient with my body but I'm more impatient with my mind on the days that the "fog" has set in with a vengeance. My mirror is full of sticky note reminders. My phone has a calendar that has appointments and notes to self in there. Do I remember to look at either the mirror or the phone? I don't remember.

I - is for irritation. That above mentioned impatience also leads to irritation. Those appointments I forgot about? Well, as I'm looking for my keys to run to them, AT THE LAST MINUTE, that leads to being very irritated with myself that I can't remember to check the calendar to see what the day will bring. 

I - is for inarticulate. That lovely little fog that keeps me searching for words. That same fog that makes me lose my train of thought right in the middle of a sentence giving me that lovely, glowing, deer-in-the-headlight look.

I - is for intelligence. I used to have some.

I - is for individual. This same illness which plagues so many of us cannot be defined in the same way for every person. The same medication that works for me may not work for you. Which brings me back to physicians who need to treat you like an individual and not throw some antidepressants at you and show you the door.

I - is for illogical. The way my body reacts to anything anymore is just plain illogical. What the heck is this new symptom popping up? 

I - is for I. 

I am still invisible because I don't want to appear different than I used to be.

I am still strong.

I am still weak.

I am still me.

I am still chronic illness.

THE FIBROMYALGIA SERIES PART G

Let's start out with genius.

I had no idea how long 

the word Fibromyalgia actually is.

G - is for genius. Let me reiterate. Fibromyalgia is one HUGE word when you decide to write about it.....letter by letter.....

G - is for gloomy. It doesn't matter how well we are doing with this.....there are days that we are just going to be gloomy. Chronic pain tends to do that. Throw in a couple of other autoimmune illnesses and you have mixed a very interesting cocktail. 

G - is for grouchy. OK, when I hurt I tend to get a tad grouchy. Oh hell, it's a lot worse than that. When it gets real bad it's better that I retreat into my room and wait for it to pass. I make everyones life a little better when I do that. 

G - is for the good days. Thank goodness we do have them. They may not be real good, they may not be what we were before but I am thankful for every little break. 

G - is for grateful. As tough as it is, we must be. As I've said before.....it could be so much worse. It could be. I know days it feels like it but.....we are not dying of Fibro. That attitude of gratitude is so important. What chronic pain can do is bring thoughts of ending it all. It feels like to go on is impossible. If you have those thoughts......PLEASE GET HELP. Call someone....anyone. Life is truly worth it.

G - is for giving. There is nothing that makes you feel better than giving to someone else. If you are mobile....find a support group and help those that are struggling. Even small acts of kindness are incredibly fulfilling. Pay it forward.....it makes you feel wonderful!

G - is for guilty. We feel guilty. Guilty when we can't be at family functions or going out with friends.....AGAIN. We wonder if they think we're faking it. We push and go anyway forcing smiles when our body is crying out. We pay for that later.........

G - is for grieving. Remember that life we used to have? We may not be able to have that life back but, remember, we can have a fulfilling one. It's natural to grieve but look forward. Limitations of all kinds will be there but we can still move past them.

G - is for gentle. Be gentle with yourself. Do you ever think you brought this on yourself? You didn't. Listen to your body and don't beat yourself up. Yes, it's overwhelming at times but, "this too shall pass."

G - is for goofball. Be one.

It's always good to be a little goofy.

It lifts your spirits.

It makes you laugh.

and laughter is good.

For your body,

for your soul

and for your spirit.