Lyrica - Just Say No

I have been interested in how successful Lyrica might be, as it is the latest drug in the industry to "help" FMS. Apparently - it is a failure. Well, in the long-term, it is. According to this website I am reading (mcvitamins.com) which includes this article on neuropathy

"Lyrica, is an anti-seizure medication... It is used for neuropathy as it stops the nerves from talking to each other so you don't feel the pain. But long term it can cause more damage."

Wow that's great. So the #1 med against FMS actually promotes it? How's that for a pharmaceutical coup?!

Detoxes - Rehabbing Yourself

I'm reading about nutritional detoxes (not colon-cleansing ones that rid the body of precious bacteria) as some of my friends have said they have used detoxes successfully to lower long-term chronic problem severity. I have heard that detoxes work for arthritis, specifically, and anticipate that FMS might be lowered by restoring an accurate body chemistry. Also, as I mentioned in previous blogs, my step-dad Arnold was able to rid his body of toxic nerve agents (grasshopper poison) so perhaps I could also correct some toxic problems, if in fact that's what has happened from the mycoplasma.

One of the most important things I read lately is the effect of stress on the body. Specifically from this site Detoxbodydetox.com:

“When you’re stressed, cortisol levels in your body increase,” says Pamela Peeke, M.D., author of Body for Life for Women. “Chronic elevation of cortisol begins to cause a dysfunction in the immune system, and it induces greater levels of inflammation in the body, increasing the risk of heart disease, cancer and autoimmune diseases.”

Given that FMS is a response to stress, it makes sense this response might be chemical. Specifically, the body chemistry gets "off", and the body is unable to counteract the damage the mycoplasma did previously. (This is my opinion only.) But given that my pain goes away every time I go on vacation (aka have no stress) there is a DEFINITE connection. Especially as FMS has been classed as an auto-immune disease.

As to permanent recovery? Perhaps. The jury is out. But until then I am now researching permanent detox diets that incorporate daily foods that are natural detoxifiers.

Let me know what you try. Anything special that has worked for you?

Chemical Warfare & Mycoplasma - Why You are Sick

It is with deep sadness and loss of patriotism of any kind that I write this. However, the facts are the facts.

Why are you probably having chronic pain? And cannot recover from your illness?

Blame Canada.

Yes, this hurts as I am 1/2 Canadian. But.

Apparently, according to documented sources, such as this one (click here) in Consumer Health, a researcher in Canada infected mosquitos with the mycoplasma virus. Chronic fatigue syndrome then arrived, of which I expect FMS (fibromyalgia) is a derivative.

This is actually confirmed in the Consumer Health article:

"Dr. Charles Engel who is with the National Institutes of Health, Bethesda, Maryland, stated at an NIH meeting on February 7, 2000, "I am now of the view that the probable cause of Chronic Fatigue Syndrome and fibromyalgia is the mycoplasma."

That's not all.

See the below quote from Consumer Health:

"According to Dr. Shyh-Ching Lo, one of America's top, top researchers, this disease agent, the mycoplasma, causes among other things, AIDS, chronic fatigue syndrome, multiple sclerosis, Wegener's disease, Parkinson's disease, Crohn's colitis, Type I diabetes, and collagen-vascular diseases such as rheumatoid arthritis and Alzheimer's. The mycoplasma enters into the individual cells of the body depending upon your genetic predisposition. You may develop neurological diseases if the pathogen destroys certain cells in your brain, or you may develop Crohn's colitis if the pathogen invades and destroys cells in the lower bowel. Once it gets into the cell, it can lie there doing nothing sometimes for 10, 20 or 30 years, but if a trauma occurs like an accident, or a vaccination that doesn't take, the mycoplasma can become triggered."

For me, it was my parents' divorce that caused the stress to make me ill. My FMS symptoms kicked in when I was under incredible emotional stress as a teenager, and have remained ever since.

And blame the U.S.

As if this weren't bad enough news, there are reports that vaccines are very dangerous. In fact, one article I was given to read ("The Mystery of Chronic Fatigue Syndrome," by the Arthritic Diseases Clinic) reported that chronic fatigue syndrome seemed to appear after flu season...In fact that correlates to the above statement, exactly. So do NOT get that flu shot! (If this is not enough reason, my late uncle said shortly before he passed away that he thought the flu shot was going to "do him in." He got the shot, became sick, and never recovered...Yet he did not die from the flu, but a heart attack.)

Back to the mycoplasma disaster. Apparently the first research/infection by the mosquitos was apparently done in 1957, says the New England Journal of Medicine. I'm not entirely clear why people my age (40s) are ill. It must be ongoing biological warfare, that's all I can figure out...

What can be done about this dreaded virus?

Well, work is underway by experts such as my organic-farmer step-dad, who has studied nutrition for years and owns Schmidt Flour Mills. He is working on a high nutrition formula of wheat, in hopes that it will help combat the virus. I know this because I asked him what he could do to help me get rid of the mycoplasm virus, if in fact, this was the cause of my FMS.

Years ago my step-dad was able to save himself from dying from insecticide (grasshopper) poisoning when he was sprayed all over with it. Others that have been severly exposed died within weeks. He was able to rush to immerse himself in water, negating the first effects. However, the poison remained in his system for years, he says, until he was able to expel it through the use of high-nutrition food. He no longer falls asleep while driving, nor experiences the other toxic effects of the poison. After the experience he began organic farming and studying the power of food energy.

He is now 82 and runs circles around me. Literally. I was up at his place recently laying around feeling ill while he was out on his organic farm/fields all day picking rocks, combining, digging trenches for new trailers and whatnot.

According to Arnold Schmidt, apparently there is one thing stronger than toxins and viruses: food energy & nutrition. I am also studying more on this, and I will share what I find out.

In the meantime, take heart that your disease is NOT all in your head. There is a cause, and sadly, it was intentional.

Now it is up to us - you and me - to do whatever we can to use powerful food energy to get better. Let's see what we can do...

Things You Can Do For Someone in Pain

There is this post I ran across recently called "12 Nice Things You Can Do for Someone in Pain." It is featured here.

Most of them sound pretty cool. Make a meal, give a lift, support their diet, help with the kids, support exercise, help open things. It is fascinating that only one of the things deals with your psychological support to the person. It is called "learn and believe." Yeah this is where people don't deal with your pain until it is visible. Then the lightbulb goes on & they see you aren't faking it, or a hypochondriac, and then they can be more sympathetic.

I'm not sure what my list would be, but I would start out with:

#1: Stop saying stupid stuff. It's pretty simple really. Stop saying you are sorry, saying you wish you could take it all away (unless you are the mother, that is fine), and generally, just stop the platitudes. You don't understand, you won't, you can't, and the less you say the better in that direction. People in pain don't like pity. We are VERY strong and courageous, and pity is infuriating. If we are crying, cry with us. Other than that, exhibit a sympathetic demeanor, ask how they are feeling & listen if they want to talk, & then move immediately into #2.

#2: Ask "what can I do to support you?" And then be ready to support. It may be stuff as simple (but hard) as "Don't talk to me in the morning until one hour after I get up." Yeah. That's really support. Or "Don't look at me every 5 minutes to see the look on my face to see if I'm ok or not." Sometimes support comes in odd ways. But ask. Believe it, and then do it.

#3: Help with solutions. People in pain are experiencing worlds that are closing in on them. Stop with the sympathy (unless you know that the way you give it works for them) and skip straight to the solutions. If they can't play the violin anymore, suggest they try photography. If they can't be on the computer to manipulate their digital photos, how about bringing art shows to them via digital slideshows, so they can take IN the art? If they can't see the digital slideshows, how about finding new compositions for them to listen to and critique. Show your value by increasing the scope of their world & being a solutions provider.

#4: Encourage them to prioritize their bodies. This may mean some of YOUR needs don't get met, as a support person, but suck it up. This is not about you. If prioritizing their bodies and making less pain for themselves means you feed yourself, make your own damn meals. Don't even look at a person in pain when you are hungry with "that" look. Go eat. Or perhaps it is encouraging them to stop cleaning the house. Or take that bath in epsom salts RIGHT now. Or pop that aspirin. Whatever it is, get expert in pushing them toward the solution they need immediately. They will love you for this, because this is the hardest thing of all for people in pain: giving up and stopping when we don't want to.

#5: Get your needs met somewhere else. Yup. Go. Your person in pain is not the source for your sex, meals, and attention. Sorry. They are an optional source, but not THE source. They just can't do it sometimes. Or maybe anytime. Choose how you want to relate to them, but in the meantime, don't put them under pressure. If you are in a committed relationship and aren't supposed to be having sex somewhere else, have that discussion. Don't make your needs stay unmet or guess what? You will leave. So give them the choice. Whatever that is.

So that would be my mini-list. Feel free to add thoughts as they might come up. But sometimes life is much harder than it looks. Supporting a person in pain isn't just bringing them a drink of water or a hot water bottle. It is helping them struggle with the DEEP issues of living, what they are giving up, how they can no longer be there for you, the kids, the dog, themselves, and how they might die alone and in pain.

Be that person.

You will love yourself for it, and so will your person in pain!

Dating With Chronic Pain - Guys' Perspective

This morning I was reading the Plenty of Fish Forums, which I adore. Many good comments from men here, and generally, the best online commentary on dating & relationships I have found. Generous, insightful commentary.

One woman wrote a post on asking about chronic pain. It is located here. (Click on the word here for the site.)

The reason I am posting this here is because I really thought two responses are great. The first deals with disclosure, the second with how you handle the pain.

Disclosure

The first suggestion is to absolutely be open about your condition. This is for several reasons - as it may impact everything from sex to children. One guy, IgorFrankensteen says this:

"So, if your chronic pain means "no sex," then you'll probably get a lot of guys mad at you if you date them for several weeks before telling them."


How You Handle Pain

The second is from the guy called AintNoDeal is very important to consider. One reason: it's exactly what I did this weekend when I was in pain. Try to fix it myself and be strong & not complaining. Here is what he said when the woman asks if she is going to be alone forever due to her illness (endometriosis)...

"I think it's wrong for you to blame your acute CONDITION as the reason men run away. It's how you BEHAVE due to your condition that is the stick in the camel's back. If you were somehow strong and silent, guys may tend to hang around, because they would become unaware of your difficulty because you don't mention it.

"I'm not suggesting you hide your condition.

"I'm saying men react to what they see as a problem. If you don't appear to be struggling and complaining, they won't consider it an issue. If it's not a problem for YOU, it's no problem for THEM.

"Take any women off the street -- if she complaints 20 days a month about her monthly visit, guys will avoid her because she "appears" to be disfunctional. A woman could bleed 29 days a month, but if she didn't gripe about it, most men would be clueless.

"Try not to make YOUR ISSUE, THEIR ISSUE."

Ladies & gentlemen, be strong and of good courage. Just be honest in the process.

I Could Have Been Sooo Much More - If It Weren't For This Damn Pain

What-if's plague everyone. Most of all, those of us who failed to realize our dreams because our bodies gave out. This is not lack of motivation. This is lack of facility.

We just can't make it happen. Or, the cost is too great.

You like my music? Great. What is it that YOU do that causes excruciating pain that I might enjoy? Would you do it, if you could? Yeah. No.

Torturing oneself for the sake of others' pleasure is an ancient - um, wait, did this ever exist? I know that torturing oneself for the sake of ones' own guilt DID exist (i.e. self-flagellation). And torturing others for the sake of one's own pleasure or the "greater good" is also common in history.

Have you ever heard of someone torturing themselves for the sake of everyone else's pleasure? Yeah. I haven't. Oh wait. There is the ballet...

So there are some who do put themselves through he** for ulterior motives. Specifically athletes - such as boxers & football players. But the trade-off is, they get fame & fortune & tip-top pay for it. Most musicians don't.

Why do pain-filled artists without extreme monetary motivation do this? Creative drive. And - WE ARE GOOD. Yeah. It sucks, but if we are good at something, and love it, we make ourselves victims to your pleasure. Ugh.

The travesty is, we could probably have excelled and surpassed those without pain that make a living at their art form. I've been told many times by my RIP orchestra director, Dr. Virginia Gene Rittenhouse, that I should to go a conservatory. And (snotty-sounding, I know), I am a much better performer than some of my friends who don't have pain. Yeah. Oh well.

They can, I can't.

So what do you do when your drive surpasses your body? Re-channel. If a stream can't find an outlet one place, it goes another. It might not be as prestigious a stream, or get as much attention ("Look baby, the Rhyne River!") but it still conveys water. Which I guess is a useful function.

If your task or drive is to convey "art" to other people, and you cannot use your original form: improvise. Really. That's all you got. I'm not being generous, I'm being real. Try a new art form. Can't, say, play the violin? Sing. Create digital photography. Write. Or do all three, like I do.

Can you still produce that art that makes YOU the happiest. No. I can never replicate the exileration of producing beautiful violin music on ANY other form of ANYTHING. That satisfaction, that ship, has sailed, baby.

But then, the poor starving folks in wherever aren't getting their IDEAL food either. (I hope, you are helping to donate something for them to eat, and somebody is getting it to them.) Either way, they don't have their ideal.

Ideal is no longer an option.

So if you have food to eat, and can pay your bills, consider yourself lucky. If you lose your "best case scenario" my advice is: deal with it. IMPROVISE.

Really. Just go on. "Ideal" is nice, but it does not make the world go round. Or your tummy full. Thank God every day you have food on your table and wait for Heaven, where you will own a Strad.

Oh, AND, be able to play it....

(This post dedicated to CCJ.)

Honoring a Body That Has Betrayed You - Why & How You Must

"Neck, I honor you. You have held my violin up for years. This brought me a wealth of satisfaction, to the stage of Carnegie Hall, a life of travel only the richest could afford, life-long friendships,and the skill of performing, in any capacity."
"Arms, I honor you. You make my life happen. You support my writing, which pays my bills. You played the violin. You carry my luggage on vacation. You help me move to a new place. You hug my friends. You pet my cat."
"Back, I honor you. You sit all day long and hurt so I can type and write, and you make everything possible."
"Legs, I honor you. You carry me to work everyday, you work out at the gym to look sexy & guys love you. As someone just said, you (my legs) got me dinner last night!"

So went my thoughts to myself, as tears streamed down my cheeks during the inaugural massage of my vacation.

Hating your body when you hurt is just so fundamental that you MUST learn ways to honor it. Whatever works, praise it. Baby it. Honor its functions, if not its form or HOW it feels to produce results for you.

Why should you do this? How do you expect to recover or lower your pain levels with hatred as a motivator? Won't happen.

Laying on the massage table, I compared myself woefully to a restored Model-T. I look pretty on the outside, but ain't no way you're gettin' 80 outta this baby. Or heck, even 50.

My body has worked hard over the years. It has brought me around the world, to 50 countries, pays my bills, and loves the people around me. But do I love it for all its sacrifices for me? Not so much. In fact, I hate it.

My body has betrayed me. It, who was supposed to bring me pleasure, success, and satisfaction brings me pain, depression and fear (I will not be able to survive).

When you are betrayed, what do you do? You take revenge. You say "F*#@ you" and try to hurt what hurts you back. So what does this look like with pain? If something hurts you ignore it. ("You again, neck pain? I don't have time for you! I wish I didn't HAVE a neck to hurt!" ) Or you make it worse. ("Yeah I don't really care how you feel, Mr. Shoulder. Do you care how I feel? You just hurt me all day long. So you're gonna lift weights now cuz you can't hurt AND be ugly too.") (See Beauty & the Beast post for more on this.)

The reason you have to do this (love your body) is for your brain. Yes, your brain betrays you too. It's the reason you have this crazy illness in the first place, probably. But your brain is really caught in the middle. Like Switzerland, your brain has to mediate. It also has to keep you going.

Your brain is the one that gets the message that you babied your body. When you have FMS your body won't necessarily get it. Anything that hurts becomes revenge, even when you don't mean it.("You just went to the chiropractor. Wait, he made MORE pain? Dammit!" "This massage hurts? It was supposed to help! NOOOO!") But still, your brain knows it's for a larger purpose. (Hurt now, happy later.) Even if what you do to help hurts, it's still facing the betrayal head-on.

So today your exercise is to - baby yourself. Be nice to YOU. Even though your body hates you, love it back. Healthy people baby their bodies. Why shouldn't you be the same?

It's not your body's fault you got sick. Stop blaming it & start loving those curves. Ouchy & all.