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…)
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.
May is designated as the awareness month for Ehlers Danlos Syndrome (EDS) which is a type of connective tissue disorder. Connective Tissue Disorders (CTD) are a collection of heritable genetic disorders that effect tissue such as collagen and cartilage. Connective tissue is present everywhere in the body from the skin and eyes to our blood vessels and digestive tracts. So depending upon the particular mutation you’ve inherited you may have limited issues or head to toe involvement. (more…)
Of the peeves I have in the chronic illness community I’m sure the word cure tops the list. Let’s be literal here for a moment. The definition from Merriam Webster Dictionary defines cure as –
A book I read recently had a passage which struck a cord with me I thought I’d share. “I’ll miss when menus at restaurants were just lists of delicious dinners. And nothing more nutritionally threatening.” Though the protagonist was speaking in reference to her eating disorder I felt a kinship to the phrasing. I miss looking at food in a less analytical way. At worst instead of seeing shrimp in a savory butter sauce I see agonizing hours of gastrointestinal torture, itching hives, aching bones from lying on a cold bathroom floor if I’m even able to avoid the emergency room to begin with. At best I see caloric density, protein, carbohydrate, moisture content, and fiber. All of which makes for a complicated if dull relationship with sustenance. (more…)
