Wednesday, August 27, 2014

Yes, no, maybe it is all in my head...

There is something about an invisible, non-death-inducing illness that makes people want to believe you chose it. I am not sure what this is exactly.

For example, if I told you I had cancer, you would melt with sympathy. Yes?

So why is one of the new diseases considered made-up just because doctors haven't invented a cure for it yet? (But rather run and hide their heads in the sand.)

I have two hyptheses for this. One is that it's not fashionable. Until we have an ice-bucket challenge, frankly my dear, no one gives a damn.

The second is that it reminds other people of the only thing they can identify with: their own perspective. If they cannot wrap their mind around it, the problem is with your mind instead.

There is also a third option. That is, that they are somewhat right. At one time, the origin of a medical condition WAS in the mind. The mind and emotions broke down and then the body followed.

After all, there is the Biblical and medical view - keep your heart with all diligence, for out of it are the issues of life. And yes, now I have an issue with life.

My anger with people asking me if my condition is all in my head stems partly from the fact that it hurts to be misunderstood and distrusted. (Why yes, thank you, it feels great to know that you think I am so attention-seeking that I would fabricate a fake medical condition just so I could give up everything I love, like violin performance, downhill skiing, swimming, dancing - and yes, even  seeing my friends for longer than 2 hours at a time. That my selfishness is so great that. I choose  sickness over a vibrant, fulfilled life. That yes, I desired to be laying around in bed rather than having a sexy husband, big house, 2.5 kids, an smashingly-successful career, and a black lab named Fido.)

But another part is worried you are right. Is it me? Am I responsible for creating my own destiny?

Fortunately this is where the medical tests come in. And the genetic tests. And the family members that have the same condition, with greater or lesser symptoms. Fortunately all of these (still to be reviewed with Doc Youngberg) tell me - yes, there is a biological reason for that.

So is it all in my head? Maybe it started there. Maybe it will be fixed there.

But for right now, let's just say...Not so much.




Saturday, May 3, 2014

Adrenal fatigue & what is left of you afterward

Wonder why you are tired? As in chronic-fatigued or FMS type of tired, where your body Just. Won't. Move? And it knows there really is a hole in the floor where you call fall all the way to China - you are that tired - but the floor just won't open?

You might have adrenal fatigue (AF).

And here is the scary and sad and blech part. Your doctor won't tell you this. Unless you have Addisons or Cushings disease, which are at either end of the energy spectrum - your doctor just won't recognize it. Period. And an expected 90% of people suffer from it, which means that everyone appears "normal" even if we are really dragging through our day, with nothing left to give. Anyone.

Wonder where I get these goodies of info from? Check out Dr. Wilson's book, Adrenal Fatigue, The 21st Century Stress Syndrome. 

It appears you can get severe AF from prolonged stress, or from just one significant event that depleted all your energy & shut down your adrenals. It's that simple. Scary, eh?

So what to do? First of all, take the test in the book. I scored 144 - where 132 is "severe" adrenal fatigue. Yes, that is annoyingly high.

Second, get some saliva tests done. You can order your own on Amazon, or I just reached out to a doctor/cousin of mine to see what he has to say. He is a specialist in the area, if you are interested - Dr. Wes Youngberg

I will let you know how things turn out. But I have started self-treating no matter what. 

The adrenal diet basically is blah. I mean no alcohol, caffeine, chocolate, sugar, white flour, etc. etc. No vices, essentially. But the good news is, you get down to your baseline energy, once you stop propping it up. And in an odd way, that feels really good.

The mid-day naps are great :). (If you have a job where you can support this.) And the eating every couple hours is helpful, but does require a little remembering to create "snack time."

But - I am feeling a little better at least, without the ups & downs of stimulants. And at least I know how fast I can move now on my own steam...China, here we come!

Healing your listening heart

The heart is not a pump, "what it does is listen," states Dr. Cowan in the Fourfold Path to Healing.

Ok, cool idea, you say. But so, what does it mean to me?

Potentially everything.

The heart is a listener. And a communicator. And if it gets broken - yes, as in heart-broken - it cannot communicate with the rest of your body. Then it can't protect against disease, or get you well. Period.

For this reason, Dr. Lloyd, the author of The Healing Code: Six Minutes to Heal the Source of Your Health, Success or Relationship Issue, quotes the Biblical warning:

"Guard your heart with all diligence; for out of it are the issues of life."

So what do you do to enable your heart to communicate again?

For starters, check out The Healing Code book, and begin doing the codes.

You will likely see, as I have, that your whole body just LOVES being released from painful memories. And the places they are stored will immediately relax and free up. (And yes, we do store memories in our cells. Have you ever gone for a massage & cried on the table & remembered something traumatic or emotional when the therapists worked on a certain part? There you go...)

Then - just keep doing it the healing codes. Because remember, your heart has a lot of places to listen to also, being the sort of central command center that it is...

You can also just talk to your heart, as I do. If it listens to my body, I expect it listens to me. So I had a good mouth-to-heart conversation the other day, where I thanked my heart for keeping up with all I had been through, & let it know that now was the time to relax and heal.

Hopefully, it hears words also. Cuz I need my healthy heart back!


Tuesday, June 25, 2013

How to support a pseudo-death - Chronic pain, parent's divorce, or break-up...

I have dealt with a number of what I call "pseudo-deaths." You know, like when your health ups & dies, your parent disappears, or you break up with someone after dating them for years & years. The problem is that society doesn't provide landmark events for these. "There's not an app for that" sort of thing. There is no funeral if your dad abandons your family. There is no fundraising & general panic if you have chronic but not-life-threatening pain. And there are no divorce parties if you break up with a long-time love. You just suck it up, and go it alone.

Because society doesn't validate these events as tragic, when it comes to supporting people in these categories, there are no guidelines to follow. So let me suggest one. If you are interacting with someone experiencing a pseudo-death, and you don't know what to say, check out the following list. This magic trifecta of verbiage avoids foot-in-mouth syndrome & prevents you from saying all kinds of landminey things.

Just try the 1, 2, 3 steps below...

1. "I am so sorry to hear that"

2. "How are you doing?"

If you want to be really great do what my boyfriend does & say

3.  How can I support you?" (See why I am with him?! He came up with this one all on his own.)

If you use these verbal support statements effectively, you will win the medal of support by your person in pain, because you provided grade-A service in earning the Relating to Pain (RTP) degree.

And in regard to all those things you would have LIKED to say but that weren't on this list? To quote me, "Be nice, not right." You can't go wrong with that.

Thursday, June 13, 2013

Party in the frying pan...Because what else can you do?!

Yesterday I realized that what I thought was a resolution on how to live with the psychological impact of chronic pain was only - an explanation. (Referencing my previous blog.) I was a bit annoyed to see this, because after more than 20 years, you would think I would have figured it out.

Compounding the issue, is that it is a bit like being a frog in a frying pan. Because you have to adjust at each change in your condition, you don't know where you started out. I know I certainly don't remember what it feels like to be normal or pain-free. It would be logical to conclude that if you want to analyze how to deal with the long-term impact of pain, that you would at least understand what that impact is. No such luck, since you are frying-panned. So the logical starting place of realizing where you're at, is pretty much impossible. And don't they say that realizing your condition is the starting point to improving it?

I am not sure that there ever comes an acceptance of chronic pain. I'm not sure it would be good if you did accept it - Because then you would stop fighting it. And fighting it is key to improving your condition. It sounds like people who lose limbs and the ability to do certain things come to an acceptance of their condition. But I have not heard these people say they suffer chronic pain along with their loss of mobility. Perhaps they do, and I am just not aware. Which begs the question, if I had to choose, would I give up a limb in exchange for losing my pain? I absolutely believe I would. But I can't try and see, unfortunately. Not that you can't remove my limbs, but that my pain would not go away with that.

I believe the loss you suffer when you lose your health, and you get chronic pain, is too big for the body and mind to process. The problem is with many of these types of pain, is that they are man-made. They are not the result of your body breaking down naturally, therefore it cannot repair itself naturally. I think the body's inability to fix itself is unusual, and the body and mind cannot process this problem.

Heck you can even recover from cancer. But not from chronic pain. So if you wonder why those of us  who have it are pissed off, that observation might explain it. We can't do a fundraiser, have an operation, or any other normal recovery fix and have any chance of it working. It is our sheer inability to get out of the frying pan is the problem. Ain't no way to remove the pan from underneath us.

So the reason I started this blog, and can't cover my main topic (which was how to deal with the chronic pain) is because there's really no way to deal with it. When you keep realizing that all your fixes are only temporary, it's incredibly debilitating. The human mind just realizes the fatality of the matter and stops trying, in order to conserve energy.

It's not like religion helps either. You cannot pray for people with chronic pain, and have them recover. Nor does religion make you specially equipped to handle the permanence of the condition. For illustration, just think of Paul, who kept asking God to remove his physical condition. God didn't, and Paul just kept asking. And life went on. I bet he eventually stopped asking.

In my experience, there is no way to deal with the long-term impact of chronic pain. You just have to go through it. You can't really resolve it. You can't hope to get better, because the nature of it is that your body cannot. Which is why I wrote in my last post, that you distract yourself. It's that or die. And you can't die, because your illness is not fatal. How ironic.

So now that I've said a whole lot of nothing, I have arrived at my lack of conclusion. There isn't one. It is one of the great mysteries of life, still to be discovered perhaps by an Isaac Newton or Albert Einstein.

Chronic pain means you'll have it for ever. And that's about the short of it. So - now that we've gotten that sobering topic out of the way...let's talk about the Party in the Frying Pan.

You coming? I hear there are good frog legs!!!


Thursday, April 11, 2013

How to Live With Pain: You Don't Dwell On It...You Keep Movin'

The reason I started this blog was to detail how to live with chronic pain in a joyful manner. I have not achieved that. Well, people think so, but I know the truth.

I have been trying to figure out what the answer is to handling the long-term psychological impact of chronic pain. I realized just this week the strategy I use most is distraction. I was about to blog on it and then...

I heard this quote by a Chopped contestant, formerly homeless Sammy Davis. Jr. He said, "Since I was a kid I just learned to live with pain. You don't stop to dwell on it. You keep movin...And that's just how it's got to be in my life."

This is really surprising to me, in a way. I never imagined that you could deal with emotional and physical pain in the same manner, but this makes so much sense. It's essentially what I've done. Sometimes to my detriment, in fact often.

But I just kept movin' too. I didn't stop playing the violin (for many years), I didn't stop traveling. I didn't stop  skiing (for many years), dancing, or exercising. I didn't stop going out. I didn't stop to sit down much in my house. Literally, I found the way to manage pain was to keep movin'.

So much so that my boyfriends have been annoyed. I just don't sit still. My cat is even annoyed! He now jumps up off my lap if I so much as cough, because he knows I don't sit still for more than a few minutes. The pain gets too annoying.

So I keep movin', and keep myself distracted.

That is the answer to living with pain. I have finally found it. Not ideal, but an answer. Not a solution, but still, it is.

An answer. Finally.

Thursday, April 4, 2013

Is what you eat getting on your nerves?

I have researched further (because that's what I do ;) the link between digestion and FMS nerve pain. And the latest research is amazing. It shows the link between FMS and SIBO, as I mentioned in the previous post. In case you are interested in reading it, here are the links:

Fibromyalgia, Irritable Bowel Syndrome And Endotoxemia

In lay person's terms, it seems to say that for people with FMS our digestive lining is compromised, so toxins leak out during digestion that shouldn't. A chemical is released and activated that connects with our central nervous system, creating systemic pain. The Arizona Advanced Medicine website describes it like this: "We may ingest a food which causes inflammation in the intestinal tract, sending signals to the brain, which are then expressed as diffuse pain in the muscles."

Anyhow, because I was so amazed by this guy's findings, I have already started the raw organic garlic treatment. He talks about it here:


I have been using it about 2x/day, because I have appointments to keep. But if I don't notice all the results I would like, I will cancel everything and try it for a week.

This guy's research is amazing because he sounds the most plausible of anyone. Ever. And he explains why more women than men get FMS.
In another topic, I have also been reviewing gluten and its disastrous effects on the body. I just got off the phone with a friend whose pain from arthritis has been significantly lowered through a gluten-free food plan. So I guess I might be trying that also...The Arizona Advanced Medicine Center also claims: "One of our patients had been diagnosed with fibromyalgia since 1996. In 2007 he came to us. One week after we took him off gluten, his pain was completely gone. Gluten, the protein in wheat, is notorious for creating chronic inflammation in many people."

Because I am still researching this, I will not say more on the topic about my experience except that I am feeling better with the use of the treatments I mentioned in the previous post. That means that I have established a clear connection between my digestion and FMS. We will see what is needed next...