This has been a banner year for my soapbox. I’m getting more and more used to spending time on it. Now, if only people would LISTEN….

Being “blessed” with a bucketload a unusual conditions, I’m not short on subject matter. But, It’s not the actual conditions I usually blather on about – its the medical professionals, and the damn governmental interference in our health care choices and well-being.
Having strange conditions require a patient like me to familiarize themselves with the research being done on the conditions from which we suffer. This does not take a lot of time, thanks to the miraculous invention called the Interweb…errr, Internet. Since everyone 10 years and older has a phone that can access this miracle information retrieval system, there is absolutely NO EXCUSE why anyone should be uneducated about their medical condition, and NO EXCUSE why any medical professional can’t do a simple search on Medscape, PubMed or even Wikipedia to try and help a patent like me. I can find a helpful article relevant to any of my strange disorders in less than 30 seconds. Tell me then, why can’t a doctor do the same thing? Do they think they know everything? Do they not trust the information in their own peer-reviewed journals on the web? And don’t DARE say they don’t have time. The time it takes for any of my docs to disagree with me about my symptoms (really?? I’m experiencing them – they actually think telling me I’m NOT helps me?) or give me the deer-in-the-headlights stare when I start speaking their (not-so-exclusive) language takes more time than running a quickie search. You have the technology – USE IT!

My other recurrent theme is government intervention in our healthcare. The feminists of decades ago said it best, “keeps your laws off my body!” That goes for all the sneaky stuff incorporated into the ACA (Obamacare) that some people blindly embrace as “a good thing.” Yes, there are good things in the ACA, but have YOU read the 2500 or so pages contained in this scary piece of legislation? I have. You would be horrified to learn what I know. Some of the mainstream medical blogs address these issues from a doc’s point of view, which make me happy, and to which I quickly and eagerly add my comments. One particular doc for that writes for HealthworksCollective is ballsy enough to remove ALL of my comments, while others have been gracious enough to welcome the viewpoints and opinions of “an educated patient.” We are the consumers of healthcare. Most of us pay thousands a year for our health insurance. We have the right to choose our diagnostics and out treatments. In no way, shape or form should a sitting president of this country tell us what tests we can or cannot have – or what treatments are appropriate for us. How DARE the government lump the citizens of this country into neat little categories, which conveniently leave out people like me with uncommon disorders and conditions. If you don’t believe me, then you might want to look back into my previous blogs and see what damage has already been done. Just a few examples: Mammograms are limited. Back pain has been relegated to neat little boxes that limit the diagnostics and treatment for anyone suffering from back pain. The “most common” health challenges US citizens are faced with are being examined by an agency called the IOM (Institute of Medicine) – and are telling doctors the THREE best treatments for these conditions. What if you or your loved one isn’t helped by these? Oh well, too bad. You may point to the sources of the recommendations and say, “these aren’t from the government.” Oh, but they are. The ACA has tasked several quasi- and non- governmental “health” agencies (the IOM is one of them) with studying “the most common conditions” and asked for “recommendations.” It is these very recommendations that insurance companies latch onto and use as the basis for denying any but the recommended treatments, regardless of their insured’s health status. It’s happened to me. It’s happened to friends of mine. Standards of care are being ignored and these recommendations are being embraced. For example: BCBS of MA recently denied MOHs surgery for suspected basilar cell carcinoma on my friend’s face. They claimed they “never heard of it!” She had to gather research and practice guidelines to submit to them to prove it was THE standard of care for the treatment of suspected basilar cell carcinoma, especially for facial lesions. I also gave her info that my father-in-law, covered by BCBS, had had MOHs at least 5 times just this year. (Somit was total BS that BCBS had “never heard of MOHs.” It was finally approved, and yes, she DID have cancer. NO PATIENT, especially one that has to pay thousands a year for health insurance, should be forced to do her own research like this – it’s ludicrous. But, we have the ACA to thank for these new glitches in our already confusing matrix. Naysayers say we have to take the bad with the good, referring to the ACA provisions. I say NO, WE DON’T.
Patients, educate yourselves on your conditions.
Doctors, pay attention to what your patients are saying. And while you are staring at them in disbelief, try doing a bit of research of your SmartPhone – what you learn may surprise you.
And Obama, keep your laws off my body.


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