Posts Tagged ‘activist’

REMEMBER THIS:

Don'tUnderestimateMe

Radical acceptance isn’t supposed to be bitter. It is supposed to bring peace.

So, I will now continue along my path, knowing, thinking, and noticing.

I don’t know what else to call this set of emotions that have lead me to say, “I’m done.”

I am just frustrated beyond words over  being marginalized by my healthcare providers, and really, just people in general.

I’m tired of the fight getting me nowhere.

I recently read something by Australian historian and author. Tim Flannery (The Eternal Frontier) that made me take serious pause: one person cannot change mass behavior that they believe to be inappropriate or immoral. By bringing such things to the attention of the majority, it creates hostility against the person. So, in other words, accept the bad/poor/inappropriate behavior and keep quiet. Accept it. That’s just the way it is. Morality never wins – the mob wins. (this is a paraphrase, not quote)

I have been unsuccessful at creating or joining a mob that can truly make a difference.

So, I am DONE.

Done doing my due diligence just to be ridiculed and then, ignored- not treated – told that I should “get used to getting older.”

Done doing this – what ever  you want to call “this.” Trying to gain acceptance as a human being, trying to get someone to care enough to try and help me, trying to teach people to advocate for themselves as I have tried to do… Maybe not forever, but for now, I am DONE.

WHY?

Maybe this is the straw that broke this camel’s back: I don’t think that the things that are going on with me now (like a sudden 10 lb weight gain; almost daily, debilitating migraines; hair loss; very easy bruising) are something I should just “get used to.” (Thanks for that sage advice, Doc.)  Just because simple blood tests show me as “normal” – isn’t it quite obvious things are far from normal? Example: I have had a bone infection for at least 4 months – it was discovered on a routine dental X-ray 2 weeks ago – but – it HAD been noted on an MRI in April. But, did ANYONE bother to address it – NO. I asked about the radiologists comment and was told not to worry. Who’s worrying? I just want such weirdness to addressed. Or should I just “radically accept” my conditions? (no, I’m not leaning towards the “church” of Mary Baker Eddy!)

Now, I am working on radically accepting that I am not going to get the care, attention, treatment, testing, concern and compassion others may be fortunate enough to get.

[If you are reading this, and are getting these things I listed in the previous sentence, please be joyous. Seriously.]

I am also trying to radically accept that my absence from the fight will not make one bit of difference on this overcrowded, selfish planet.

Now…I am DONE.

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To those opening this time capsule/blog on April 1, 2112…Gads, I sure hope health care in the U.S. is now delivered equally, and by providers that take the time to treat the CAUSE of problems, and not just put band-aids on the symptoms.

I recently discovered a group of people like me exist in the world. (Frightening, I know.) We are called “Health Activists,” and blog/post in social media to document our struggles with the health care system (and what a joke it can be), and to chronicle our health challenges in the hopes of helping others with similar ignored/undiagnosable/seemingly rare health conditions.

I have a jackpot of maladies. Yet, to look at me (as those with degrees in “parking-lot diagnostics” often do – most of you get what I mean), I look fairly normal. But in 15 years, I have gone from being a competitive powerlifter and personal trainer in remarkable shape (albeit a few pains from the underlying illness that had not yet surfaced completely), working 70 hours a week as a senior litigation paralegal in a major law firm, to a “rapidly aging-can’t even get through a yoga class-and don’t try to work at ANY job more than 3 hours at one time” waste of oxygen and space.

Almost EVERY SINGLE health issue I have, save for the brain tumor found on an MRI and an adenoma found buried deep in my excessive breast tissue by an ultrasound, I researched and diagnosed MYSELF. And once, I tracked down the doctor across the country to get some help. That’s right. Myself. And for my most recent triumph, I discovered the link between opiates, pituitary hormone dysfunction and the primary sex hormones (based on research that BEGAN in 1979! Not exactly new stuff) – all because I suddenly entered an extraordinarily painful “2d adolescence” (at 47!) SIX doctors didn’t have a clue what was going on. What a waste of money, time and years spent in medical school. There were loose connections drawn, but not one tried to find THE CAUSE. Why did all these people go to medical school if they don’t want to help heal people, to find the cause of suffering, and to ameliorate whatever it is that is making their patients ill.

You know, if I wasn’t blessed with the rockin’ research skills I have, I’m sure I would be dead by now. I sure the heck hope that in 2112, people don’t have to literally fight for health care and attention as I have had to do.

Perhaps by now (2112) , the humane genome can be sequenced affordably, and doctors will look there when maladies that don’t fit into their little collection of diagnostic boxes.