Sunday, September 29, 2013
We are our own worst enemy. Every day we have to fight a war. War against pain, war against fatigue, war against an invisible illness that most don't understand, war against indifferent doctors and war against pharmacies just trying to fill our prescriptions.
Why then do we turn the war on ourselves?
I've been to support meetings and read blogs and hear people talk about medication. Some even seem proud that they don't and haven't given in to prescription medication. That's good if it works for them but to make anyone else feel less than human for taking them is wrong. Using medication that you might become physically dependent upon isn't a sign of weakness. That is an unfortunate side effect of maybe feeling normal and productive.
We err on the side of the addict.
Maybe we're trained that it's greedy and selfish to want something for ourselves. All I know is every time I swallow a pill I feel weak.
And that, my friends, is stupid.
If we are responsible and knowledgeable about the power of the pills, if we "follow the rules" then there shouldn't be any self-loathing about using narcotics or pills that help us get the restorative sleep we need. When did it become the norm that suffering is noble?
We can do so much more when pain isn't creating havoc in our bodies. If we can sleep then maybe, just maybe, we won't be as stiff and sore in the morning. If that happens maybe, just maybe, we can get the exercise that we need. Don't people get it? It's a vicious cycle. We need exercise but it just hurts too much to start.
I think we need to like ourselves a little bit more and not look at medication as weakness. There are a lot of therapies out there and every one of us need to tweak them for our own use. I don't think we should feel bad for wanting to feel better.
We fight a war every single day.
And sometimes it feels like we should give up.
And we shouldn't be one of the civilian casualties.
Thursday, September 26, 2013
I knew it.
Yep. I knew it.
And I did it anyway.
Okay, it sounded good. I saw a commercial on television for a clinical trial. They were testing a new drug for Fibromyalgia. I figured I'd call and check it out.
I was certain I wouldn't qualify anyway.
So, I have to be there at 8 A.M!!! That should have spoken VOLUMES but, no, I crawled out of bed hating EVERY MINUTE of my early morning ritual. Wait......who am I kidding. At that time of the morning all I want to see is my computer and coffee.
And it better be quiet.
Let's get back to the ritual thing. I took a quick shower, no makeup and threw on gym clothes. I looked and felt like the rag I am in the morning. I got there and had to fill out an application. Considering what we were doing I thought it could have been a little more comprehensive.
That was to come later.
I had to bring all my vitamins and medications. They looked at all of it said the doctor would talk to me about it.
That should have been a flag.
They did an EKG and took blood. Another 15 vials. If I wasn't tired enough that ensured that I would need a caffeine drip into my veins while holding a diet coke and a double shot espresso.
Then the doctor arrives holding a ream of paper.
That should have been a flag too.
First, she tells me that I wouldn't be able to continue taking the medication for muscle spasms and pain. You just can't stop these medications cold turkey but obviously she thinks you can.
Then she hands me the paperwork.
Let me just run through the side effects.......risk of falling or fainting, use caution while standing, use caution while exercising, use caution while driving, avoid large meals (?), suicidal thoughts, headache, dry mouth, drop in blood pressure when standing up, increased blood pressure and heart rate, dizziness, nausea, vomiting, difficulty sleeping, excessive sweating, constipation, sleepiness, difficulty urinating, hot flashes, SEIZURES, STROKE and low sodium in the blood.
Oh yeah.......I'm in.
ARE THEY EFFING KIDDING?????????
Anyone ever see the episode of Two and a Half Men where Alan Harper does a clinical study? It's pretty funny but I can see my hair falling out in clumps!
It's kind of like that.
I'm sure I wouldn't be in the placebo group either.
God Bless the people that do these.
The side effects aren't worth the $460 dollars they want to pay you to do this.
Friday, September 20, 2013
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 musculoskelatal 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....
Until we find the missing piece of the puzzle.
Monday, September 9, 2013
It's invisible illness awareness week.
Can you see me now?
I'm mostly invisible. On the days when the pain borders on excruciating those who know me real well can read the signs in my eyes.
Not many can.
But it's a double edged sword.
What most people can't see is the pain that starts the minute I open my eyes in the morning. Yes, there are different levels of pain but I can say with certainty that my pain level in the last five years hasn't gone below 5. Ever. Actually, I think a pain level of five is, in my mind, almost pain free.
People that have chronic pain are not weak. We may have a low threshold for pain but, trust me, we have a REAL HIGH tolerance for pain. Chronic pain has the ability to really play with your head so it takes a real strength of will to stay on the straight and narrow while dealing with pain on a daily basis.
I've blurred what pain actually means to me.
We are people of duality.
We are strong yet weak. We are wimps and yet we are warriors. We are brave and yet we are cowards. We are rigid but yet we are flexible. We are reserved and private but yet we are open and vulnerable. There are times we stand tall and unafraid but then there are the times that we seek refuge from fear. We long to be visible but feel some comfort in invisibility.
No one sees how I walk to the coffee maker first thing in the morning. I feel weary from a nights sleep that is broken into small pieces that resemble a power nap. My mood tends to be quiet because I need time to figure out how to navigate through the pain. My personality tends to fight the way I feel. I still haven't accepted, even after all this time, the label of chronically ill. I really struggle how to work within the confines of my body.
I over-do it because I can tell others to pace themselves but I can't seem to follow my own advice.
I can't control what my pain levels will be on any given day. If it was just the Fibromyalgia, maybe, just maybe, I'd be able to manage things a little bit better. What the accident in 2008 manage to accomplish was 5 disks in my back that are shot, nerve damage in my legs and I found out that surgery probably isn't an option. Throw in a little Hashimoto's with thyroid disease and I don't know if my problem is the pain from my back or legs, the fibromyalgia or if my thyroid medication isn't working again.
Geez, I sound like a mess.
Well, this brings me back to the invisible illness. I am guilty of perpetuating the term "invisible illness." I've come to the conclusion that I don't want to appear weak. I don't want to be pitied and I don't want to be considered a woman who has a ton of neuroses. So what do I do? I put myself together and this takes well over an hour. It takes time to shower and put on makeup but it takes the longest time to reach up and dry my hair. The simple task of blow drying my hair is enough to make me run to the medicine cabinet.
So what do I do?
So what do I do?
I hide pain so I won't be judged.
The doctors do that enough.