Tuesday, May 1, 2012

A Rich Woman Disease

Or a man. Gender is not important here, it's the bank account that is. I just came from my twice annual doctor appointment and am pretty disgruntled. First off the fact I am only seeing my doctor twice a year now is huge. It was more like twice a week when I was at my sickest and disabled. But I am not appreciating that fact. I am not appreciating I have not met my deductible yet, either, and here it is May 1st. In years past I would be well on my way to hitting maximum out-of-pocket by now. So I suppose I should be grateful. But I am not.

What I am is disgruntled. Because once again I went in with a list of questions and left with very few answers. I am living on pharmaceuticals. So many strange and mysterious illnesses which don't get any attention because modern medicine does not know how to treat them live in my body. I traced the root of three unrelated conditions to my liver. But what does this all mean? As a writer and retired makeup artist I understand medical jargon pretty well but let's be honest here, it is not a language I am fluent in. But if I don't keep pushing for answers, researching endlessly and looking for a way to link all these problems in my body, nobody else will.

My husband called me on my way home from the appointment. As I am relaying my frustration, and quite frankly my anger, about all my problems and the lack of progress in getting to the root cause I blurted it out. "I have not had a doctor that listened to my long list of symptoms, took every one seriously, and knew more about my diseases than I do since...the Fibro clinic! And I paid out the wazoo for their treatment and don't have any more money!" That is when it hit me. We gotta pay for it. A Functional/Integrative medicine doctor is what I need, we all do in my opinion. A doctor who is paid well for their time and vast knowledge of both modern medicine and natural therapies, and how the systems of the body relate to each other. Unfortunately I don't have the money to pursue this, and know few Fibromyalgia patients who do. I believe Fibromyalgia is the outcome of a specific problem, or cluster of them. And they may be different in every patient. I also believe finding the root cause or causes and treating them could lead to serious symptom relief for many patients. But if they are all different how on earth is anyone going to find commonality and develop a standard of care? All we the patients can do is keep pushing awareness, respect and believe in ourselves, and fire every doctor who dares to utter the accusation that you are lazy, crazy, wimpy or a junkie. 

Thanks for joining,
Leah

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6 comments:

  1. Oh my I am so sorry. My doctor sees me every 3 months and really listens. My promblem is my insurance. It dosent pay for anything.

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  2. I am so with you girl. It blows completely. Not having the duckets to get the care resulting in an even shittier system. Blah.

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  3. I understand about the doctors...everyone that I have seen have blame it on depression, lack of sleep or my favorite I have a low pain tolerance! Please save me from doctors!

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  4. I went to two specialists who basically told me to learn to live with it. My GP's PA was the only one who took the time to listen. I had been on a non-therapeutic level for over a year with no relief. She doubled the amount of cymbalta (to 120mg daily) and after about a week my pain level was reduced by half. It's so hard to find a doctor that takes the time to listen to YOU and not just write another pprescription.. I can't. Imagine how people without insurance cope.

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  5. Just began going to Whole Health Chicago to see Dr. Edelberg. Seems much better that my last few doctors, have to see how his treatments work out.

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  6. I have a rheumatologist who does help and listens, but I am on so many Rx's. I need to go back to the integrative meds doc but my insurance is so screwy lately...gotta wait for my hubs to change jobs and get new insurance.

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