National Porphyria Awareness Week Day 3

21 04 2010

My post today is in response to some of the comment threads on previous posts. I started replying to each specific comment, but then realized that I should bring the discussion of healthfulness to the table for all my readers.

It fits in with the topic of awareness, just because.

Several of you have written about being diagnosed at some point with IBS. Irritable Bowel Syndrome.

I was told I had IBS many years ago.

I’ve also been told I’ve got endometriosis, interstitial cystitis, fibromyalgia, chronic fatigue.

The common thread? These are all diagnoses of elimination. In other words, people who have pain, but no apparent source of this pain, get told they have one of these things, and are then told to take some pharmaceutical and shut up. A gyno told me that if I didn’t want to take birth control pills for the endo, then there was nothing she could do for me and I should leave. She wouldn’t tell me what CAUSES it, what I can to do relieve it non-drug-wise, what it was exactly, or even if I definitively had it.

IBS falls into that category: It’s abdominal pain and upset and a medical doctor can’t tell you exactly why it happens. They may make up some theories, and then tell you it’s your fault: You’re not eating the right thing, you’re drinking too much, you’re not exercising enough. Just the name, Irritable Bowel, implies that our body, and therefor our willful selves, aren’t cooperating. Like a naughty child. I can’t tell you how many times I’ve left doctors’ offices feeling guilty. As though I’ve done something wrong in my life to deserve pain. It’s something I’ve internalized and now hold as a deep-rooted belief. I’m having to spend a lot of energy correcting that now.

Other traditions that look at the whole picture of health, though, will tell you that something like IBS is an energy stagnation (or something similar,) which I truly believe. Whether it’s Traditional Chinese Medicine, Ayurveda, or some other Eastern philosophy, I highly recommend exploring the emotional and spiritual causes of pain.

Our abdomen is a very powerful place in our body, full of our life energy: It houses our organs that process food for energy, it houses our reproductive organs, it becomes a home to our babies, it controls the very air we breath.

IBS is a cop-out. A western medical way to explain away physical manifestations (including organ damage,) of emotional and spiritual pain that many western doctors aren’t prepared to deal with, because a pharmaceutical company hasn’t told them to do so.

That said, I suggest trying a gluten-free diet. It helped my stomach issues immensely. Trial eliminations of gluten, dairy, and then soy, may uncover mild (or not so mild) sensitivities and allergies that we learn to live with, unnecessarily. I also HIGHLY recommend the book Women’s Bodies, Women’s Wisdoms by Dr. Christiane Northrup. She’s a gyno who got sick of only treating the physical symptoms over and over, and decided to explore the other aspects of our complex well-being. The book is my go-to for almost everything that ails me. It’s also shown me peace when I thought there was no peace to be found.

And truth be told, Porphyria the Disease really responds to energy treatments. True, science has found the architecture of the disease, and we have (mumble-jumble) explanations for what happens and why (kind of.) But what about that abdominal pain? Even though it’s a recognized symptom of an attack, there’s no scientific explanation for it. Nothing shows up on an x-ray. Some people even undergo painful exploratory surgery, to no avail. The pain seems to originate from nowhere.

Or does it?

Some of the most effective pain relief I’ve experienced has come from deep breathing, meditations, and concentrating my own body’s innate healing powers on the pain. Just taking a moment to acknowledge pain and listen to it, wait for its message, is very powerful, rather than hurry to cover it up with drugs.

Now, my mamma didn’t raise no fool. I also know when to acknowledge my need for pharmaceutical intervention. Sometimes we have to break the pain cycle with pills, so that we can clear our heads enough to grapple with the underlying issues. I’m not objecting to all drugs all the time. I’m suggesting that we stop relying on them as the end-all be-all for health issues.

If any of you decide to pursue any of the Eastern traditions or food eliminations, please update me! I want to know how it works out for you.

Here’s to our health revolution!

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6 responses

22 04 2010
Laurie Smith

In my opinion treatment without drugs is the way to go if there is a choice. Back in the late 80’s I was diagnosed with fibrocitis (they call it fibromyalgia now). I didn’t care for any of the drug therapies we tried. The best help I ever got (and Jan will like this) was chiropractic. I need to go see Dr. Everett again. I do consider her a great healer. If she can’t do anything specifically for porphyria – there is an array of surrounding things she can certainly relieve.

22 04 2010
Laurie Smith

Another great source of help for me has been Heather Van Vorous at helpforIBS. She is an angel sent to sufferers. While we are all trying to get to the root of our problems – she is a great help along the way. There are lots of great recipes (gluten free, fat free, etc.). She has grip on digestive problems that doctors just don’t seem to get! I recommend her to anyone who has difficulties in this area.

22 04 2010
Laurie Smith

Speaking of great help! If any of you have ended up with pelvic floor problems because of your difficulties…Saving the Whole Woman by Christine Ann Kent is an excellent source! Always the first thing recommended for this type of problem is surgery. Christine found a way to heal herself without surgery or drugs! She really speaks to the line of thinking Sabrina is alluding to here. One of healing yourself through diet, meditation, specific exercise, dance, posture, etc. I found it fascinating. Certainly when you begin to so some of these things you powerful, as though you have some control over your body and your life. Even if you just pick up a tip or two from her they can make great changes in life with – shall we say imperfections. 😉

Okay, I think I’m done now.

22 04 2010
Cre

Diet, exercise, ballet, posture, decreasing stress, etc. . . . I did it all and still got sicker and sicker. If you have been diagnosed with any of the chronic conditions mentioned above and want more answers, you should really consider exploring the possibility that you may have Lyme disease.

Please take a look at this promo for the award winning Lyme documentary Under Our Skin. It is only a little over five minutes in length:

It is a real eye-opener. Our healthcare system and our govt is in complete denial of all of this, unfortunately.

23 04 2010
Helena

I’m a porphyriac and although I’ve only once had what has been recognised as an attack, I have had a series of seemingly random and unrelated health issues over the years, which I’ve been told by a researcher, seems to be a common theme in porphyria patients. I’ve had the IBS and chronic fatigue labels thrown around (though I did have a doctor once who wouldn’t diagnose either because he didn’t believe that there was anything to be gained from the diagnosis since it didn’t give you any useful information), as well as a doctor who kept telling me that I was depressed and that was the cause of everything. Yes, I was depressed. Not being able to function like a normal human being will get you down a bit!

It got to the point once, when the “IBS” was so bad that I asked for a referral to a dietician who put me straight on an exclusion diet. Not a lot of fun, but within two weeks I went from barely being able to drag myself to the kitchen, to practically bouncing of the walls. The culprit of the years of feeling ill and pain? Gluten, of course.

Recently I’ve started to trawl the internet for stories from other porphyriacs and I’ve been amazed at how often gluten-intolerance and MCS seem to come up. Apart from certain types of air con systems and overpowering laundry liquids, I’m not too sensitive to chemicals, but my brother (also a porphyriac) certainly is. It seems that someone should really look into whether these things are connected and I wonder how many porphyriacs out there would benefit from cutting gluten out of their diets. It didn’t solve all of my problems, but it was only once I’d got it out of my system that I could really appreciate how severely ill it was making me. I’m definitely better off sticking to a gluten-free diet.

23 04 2010
Helena

I forgot to mention that I’m sure I read somewhere (but of course, can’t now find where) that they’ve now discovered that the pain in an attack actually originates from the nerves themselves. This is presumably why you don’t get any of the other signs that doctors would expect to see with that kind of pain – extended abdomen, tender spots etc – and patients can get accused of drug-seeking or psychosomatic illness. I guess that this is also why it can be quite so severe.

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