A Letter To Lost Chances

To all the many dozens of “bad” doctors I have encountered. I am not angry with you because you failed to properly diagnose or “fix” me. I am angry with you because you gave up on me, gave up on my life and drive for my future, how you scarified my trust not only in medicine but in people because you never tried to begin with. (more…)

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“Dirty Words”

I had a bit of a flashback today. Intro to sociology 2009 junior college. The professor decided to open class with a series of questions. Do women deserve equal pay for equal work? Are women entitled to vote as much as men? Should women be allowed to own property or have their own bank account? The general consensus of the class thank goodness was yes. Then he asked how many of us considered ourselves feminists. Very few hands were raised, which was rather surprising considering how many answered affirmatively to the prior questions. This is what proved his point, that feminism had become a dirty word in society. My point in this moment of reminiscence is that certain words have an undeserving reputation in society. Disabled is absolutely one such word.  (more…)

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Causing A Stir

Advocacy isn’t easy but ignorance is worse. Unfortunately there are many happy in their “fool’s paradise” who choose to perpetuate misconceptions that are more comfortable to them than the truth especially when related to health. (more…)

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When In Doubt “Psych” It Out

Hypochondriac, Conversion Disorder, Anxiety, Depression all things people with rare disorders or unusual presentation are bound to be told they have at some point. True our horrible symptoms can casue psychiatric complications. Who wouldn’t be anxious when your joints suddenly dislocate or you vomit at random and people keep telling you its all in your head? (more…)

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Lyte Me Up!

Chronic illness or not at some point everyone experiences the kind of dehydration that drags you down to a listless lump. With chronic illness whether it is the disorder itself or the medication and treatment prescribed to you dehydration and electrolyte imbalance can be a daily battle. (more…)

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The Dreaded Acronym

For anyone who has been through long undiagnosed digestive issues you’ll know these five horrible letters EDNOS. Which stands for Eating Disorder Not Otherwise Specified and at some point became the catch all phrase in gastoenterolog-ese for “I have no clue whats really wrong with you”. Not that EDNOS isn’t a valid diagnosis but it is frequently abused within the field of gastroenterology.

We aren’t some “greatest hits” cliche mashup of an anorexic controlling calories to control their life, an emotional drive through binge eater, or a bulimic trying to purge what feels to be a bad choice. We are counting calories to determine our literal survival, were emotional from lack of variety and nutrition, we aren’t purposely purging we are curled up dry heaving while simultaneously praying to puke and berating ourselves for being “stupid” enough to eat knowing the fate that awaits us.

Before my gastroparesis and intestinal motility diagnoses this was my label. A label that got me nowhere but a a lot of referrals to a lot of therapists who also (mostly) had no clue what to do with me.  Its a marvel to me that it seemed acceptable to these doctors that six months and three tests with unusual but not definitive results was enough of a reason to paste the EDNOS umbrella over my chart and move on without resolving a single issue. You can see why I am opposed to the term “healthcare”.

This type of behavior is damaging to multiple areas of the medical system. Leaving the patient improperly diagnosed leaves them without adequate treatment. The label of any type of eating disorder will send you to a psychologist before a medical doctor meaning they miss out on second, third, or fourth opinions who could have yielded other ideas and results. Its damaging to the doctors who gave up limiting their knowledge of other syndromes and treatments they could offer to future patients. Its damaging to insurance when the patient must rely on emergency visits for symptom management. All around a whole lot of bad from one inaccurate overly convenient label.

Its been three years since I had concrete test results in hand to confirm this diagnosis and I am still struggling with that label in my charts. Doesn’t seem to matter how solid your proof doctors will always trust the paper opinion of someone they likely have never met over whats firmly in your hand confirmed by their precious science. I still have issues obtaining needed medication and IV fluids. Insurance constantly denies claims for therapies and testing that would allow me to be eligible for previously unexplored treatments such as the Gastric Neurostimulator AKA stomach pacemaker.

When you have a physical disorder especially motility disorders that are easily missed by static scans being labeled with a mental health diagnosis is severely limiting. It took seven years, several dozen doctors, four scopes, four separate ultrasounds, three out of network referrals, two CAT scans, three hospitals across two counties, countless vials of blood, many nights spent in the ER, and one gastric emptying scan to get to my answer. Much of which would have been done faster and more effectively if I hadn’t been stamped a “mental case”.

I truly hope posts and blogs such as this encourage spreading the wealth of knowledge that can save others from my prior fate. When patients advocate and push for what should be given freely in medicine we will get where we need to be and hopefully begin to make a dent in the absurd abundance of ignorance in medicine.

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