Neuropsychology Take II- Testing Day

Welcome back to the second edition to my neuropsychology testing chronicle!

In the first post of this series, I discussed my recent admission appointment with a neuropsychological practice for long-term troubles with Anxiety, Depression, PTSD, suspected Autism Spectrum Disorder and worsening cognitive impairments. Neuropsychology is the marriage between the neurological and psychological processes of illnesses allowing the complete view of the complex pathology of neurodegenerative disease. In the not-so-distant past, these components were separate and faulty as a result. Neuropsychological testing is an important part of medical monitoring in chronic illness life with Ehlers-Danlos Syndrome just as much as all the scopes, scans, and blood work. The testing examines processes which cannot be objectively defined otherwise while offering validation to those suffering from permanent and/or progressive deficits.  

[Image Description: Pexels.com photo of a room with a clear model of the human skull with red, blue, yellow, and green colors highlighting different components of the system. In the background is a hallway with a non-definable person walking past the glass walls between the room holding the skull. An orange lined olive green text box covers the left half of the photo with OnlyinthisHead.com Chronic Illness Life with Ehlers-Danlos Syndrome Neuropsychology Take Two- Testing Day.]
Finally getting this type of evaluation was a long time coming in my lengthy chronic illness story. My experiences as a Psychiatric Registered Nurse and chronically ill, undiagnosed Medical Zebra frightened me to the point I avoided any type of psychological care for the last several years in fear of mistreatment. 

Ten years of declining neurological and cognitive functions, long-term struggles with anxiety, depression, PTSD, and suspected Autism Spectrum Disorder combined with recent, notable exacerbations of these issues make neuropsychological consult an absolute must.

This important step establishes a solid baseline of data for future comparison when the inevitable declines hit. Medical monitoring is a crucial but necessary evil in Chronic Illness Life with Ehlers-Danlos Syndrome.  In the USA, every action in healthcare finds billable justification for treatments within the never-ending volume of ICD codes. Grievously, these ciphers are faulty with too stringent of criteria leaving access-denied bodies littered along the wayside of the road towards proper diagnosis and management. I urge every Spoonie to investigate the route of neuropsychological testing to better illustrate the difficulties experienced and better shape symptom management options towards improved quality of life. 

Truly, it’s a daunting task even considering this route in my journey after decades of years proving my medical complaints were not Only in this HeadAppropriate coding and criterion noted by a diagnosing practitioner makes a world of difference in navigating the turbulent waters between providers, insurance companies, and access to care, especially with rarely diagnosed, complex disease processes like the Ehlers-Danlos Syndromes. Taking this step is a pivotal point of my journey. Furthermore, the choice took great courage and gumption because sometimes knowing is scary!

[Image Description: Pexels high-def photograph of wooden post fence the each post varying in size. The background is blurred but greenery and a house are visible through the filter. Overlaid is a green octagon shaped text box in the center of the picture with the following text in white: OnlyinthisHead.com Chronic illness life with Ehlers-Danlos Syndrome Neuropsychology Take II: Testing Day. Below there is a cream colored textbox with the Vilayanur S. Ramachandran quote “The boundary between neurology and psychiatry is becoming increasingly blurred, and it’s only a matter of time before psychiatry becomes just another branch of neurology.”]

Neuropsychological evaluations offer quantifiable evidence of cognitive function with a definable focus on intelligence, memory, mental processing, behavior, and mood.

My troubles in all these areas start with my first memories but in more recent times a sharp, notable decline took my brain by storm over the last few years. I cannot recover my bearings as I once did. Sharing this experience is an effort to help others facing similar struggles in hopes they may find support and information in the lessons offered in this cathartic exchange.

My newest life’s mission incorporates weaving invisible disability and disease awareness into my writing. Sending off my neuropsychiatric journey to the vastness of cyberspace is terrifying but not so much as the lack of awareness still pervading modern culture to this day. After endless years of symptoms undiagnosed and undertreated, my nervous system is spent!  I liken it to a broken phone charger: if you hold it like this, maybe twist it like that, and then leave it lay perfectly still it gives off a few more amps of power… Just not enough to keep me going before everything goes kaput again…Not anymore!

[Image Description: pexels.com high def photograph of a white iPhone plugged into to a USB charger which is connected to a laptop computer. The cord of the charger is wound up beneath the phone. All the this laying out on a wooden surface from an overhead view. In a white and tan text box on the top left-hand side of the picture with the blog title and blog post title: Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome Neuropsychology Take II: Testing Day. On the right side of the photo covering the laptop is another white and tan box with the following quote from the blog article: After endless years of symptoms undiagnosed and undertreated, my nervous system is spent! I liken it to a broken phone charger: if you hold it like this, maybe twist it like that, and then leave it lay perfectly still it gives off a few more amps of power… Just not enough to keep me going before everything goes kaput again…Not anymore!” At the bottom of the box is OnlyinthisHead.com in black text]
As a whole system, the body aims towards balanced responses to intrinsic and extrinsic factors affecting homeostasis. Using administrative privileges as needed, the body powers down less vital systems to make up for the ill effects of other systems gone rogue. Fundamental quandaries in cellular function run amuck, causing metabolic dysfunction. Eventually, natural defenses break down, leaving no system is unscathed by the disequilibrium.

Predicaments disrupting the natural ebb and flow of the body are often times first evidenced by neuropsychiatric symptoms. Even “just depression,”just stress,” or “just anxiety” may be caused by degenerative processes beyond our emotional states. The processes work insidiously, damaging neurological functions over time with the only signs and symptoms being mental disharmony. 

Depression, anxiety, mental fog, memory issues, difficulties with problem-solving, lack of attention to details, and inability to sit still are just a few cautionary signs of neuropsychiatric illness too often disregarded as psychosomatic symptoms by practitioners who lack interest or time. Such complex cases end up worse for the wear because of this common tendency to disregard a person’s complaints as simply stress induced.

What’s worse is everyone deals with psychosocial stress in life. These mental effects are normal reactions to life stressors. Neuropsychological testing illuminates the blurred boundaries between normal and abnormal changes, allowing for clarity and objective data collection from a chronically ill brain’s reaction to life as a result of pathophysiological illnesses affecting the nervous system.

[Image Description: Cartoon picture authored by verymom.com. The scene shows a light-skinned, balding man in a white lab coat reading off a paper that says labs at the top. A light-skinned woman with brown, disheveled hair in a light blue dress sitting on an exam table. The woman is covered red rashes and spots and there are bags under her eyes. The text above the picture reads “Good news! Your lab results look great. Everything is normal; you are the picture of health.”]

Too late Doc, the damage is already done!

According to Oxford Medicine, “Neuropsychology is concerned with disorders of affect, cognition, and behavior that arise from an overt disorder in cerebral function, or from indirect effects of an extracerebral disease.” These disorders include Alzheimer’s, Dementia, ADHD, Anxiety, Autism Spectrum Disorder, Parkinson’s Disease and numerous others. Rather than archaic psychological tactics of assessment, Neuropsychology uses structured, scientific testing methods of determination to clearly define exactly which portions of the brain and cognition are malfunctioning.

The Testing

Including an hour break for lunch, it took nearly five hours to complete all aspects of the testing. I answered a variety of questions measuring my intelligence, comprehension, recall abilities, and how my mind processes reality. This line of questioning proved nerve-wracking as my attention to detail is great but my ability to process incoming details is severely impaired. As I experienced difficulties in several categories, a sense of validation entered my conscious thought: Finally, quantifiable evidence.

One of the most memorable aspects of the testing included the Rey Osterrieth Complex Figure Test. This test entails the subject (me) drawing a picture of a simple spaceship design shown below. Per the instructions, I copied the picture once initially while the sample was still visible. Then I copied the figure from memory after a half an hour. Finally, I reproduced the design a third time at an hour out from the original drawing. This test measures cognitive abilities on a scoring system giving points for correctly drawing details as well as a consideration to the time it takes to reproduce the figure.

The Rey Osterrieth Complex Figure Test measures visuospatial abilities, memory, attention, planning, and executive functions.

Theoretically, the results reveal incites about a person’s ability to function, measuring cognitive deficits in memory, perception of objects in time and space, attention span, and even planning and executing functions essential to living.

Another component of my exam included the Kohs Block Design Test which measures intelligence. What’s unique about this particular intelligence test is it doesn’t require spoken or written language, thus making it particularly useful when language barriers prevent accurate intelligence assessment. I was instructed to copy patterns from a book of pictures using blocks with shaded sides.

The simpler patterns were easy enough but as the designs became more complex I felt mental blockades stopping me from any quick discernment to an embarrassing extent. The Kohs Block Design Test measures frontal and parietal lobe functions, quantifying difficulties expressed in neuropsychiatric illnesses such as Bipolar Disorder, Alzheimer’s and Traumatic Brain Injury. When scored this test reveals mental age and level of executive functioning objective from the subject’s experience.

The Wisconsin Card Sorting Test was particularly difficult, leaving me feeling less than capable by the end of the trial. This test assesses frontal lobe functions in the form of “strategic planning, organized searching, utilizing environmental feedback to shift cognitive sets, directing behavior toward achieving a goal, and modulating impulsive responding.” For the life of me, getting a grasp on the rhyme or reason to this test was difficult if not impossible. Much like sliding down a slippery slope, my mind eventually curled in a ball refusing cooperation on the matter soon after each new card pattern began and my responses became nothing but desperate guesses. I felt frustrated and concerned about my difficulties getting the point of this test.

Wisconsin Card Sorting Test- to access for frontal lobe dysfunction.

With frontal lobe dysfunction, emotional and behavioral control becomes much more difficult. This effect compounds in the form of interpersonal issues along with difficulty in scholastic efforts, career, and social adaptation.

[Image Description: Digital image of the human head with the lobes of the brain highlighted in different colors. The frontal lobe is pointed at the forehead of the figure and highlighted in light blue.] Image credit Center for Neuro Skills
The frontal lobe holds the gage on impulse-driven behavior. Dysfunction leads to disturbances in the ability to manage impulses and/or respond to extraneous stimuli in a productive manner. Problem-solving, planning, and organization declines with damage to the frontal lobe. Personality shapes in response to frontal lobe function, making personality disorders such as Borderline Personality Disorder or Antisocial Personality Disorder more prevalent in those suffering brain damage from disease, trauma and most often, both. Multiple Sclerosis, Parkinson’s Disease, Vascular Dementia, and brain tumors are a notable few causes of frontal lobe damage as a result of neurodegenerative processes.

Feeling the frustration from the difficulties I experienced while undergoing these different tests exhausted me into a haze for more than a week after testing day. Even before my career ending injury, I began noticing mental delays and poor decision making when under stress in myself. As those stress levels peak and trough throughout life to extreme degrees, each swell serves to chip away at the stability of my faculties a little more. Now at the precipice of my decline, I feel fortunate to still possess cognition knowing I need the changes defined and documented in my records for future comparison.

via GIPHY

[Gif description: clip from the movie Girl Interrupted. Susana played by Wynonna Ryder is sitting in her doctor’s office on a chair in front of large white framed windows. Susana is wearing a black and white striped shirt with black pants. Her hair is dark and very short. She is smoking and ashing the cigarette in a glass ashtray on the table next to her seat. The doctor is seen from a third wall view from behind. The text reads: Doctor-Explain it to me. Susanna- Explain what? Explain to a doctor that the laws of physics can be suspended?]

There were quite a few more aspects of the testing I cannot recall due to my poor memory. The table below lists several testing modules included.

[Image Description: Table of testing, measures, and length of time testing takes with neuropsychiatric testing. From the top- Paced Serial Addition Task to measure information processing speed and working memory 10 minutes Controlled Oral Word Association Test speeded measure: word list generation: sensitive to frontal lobe deficits 5 minutes Trail Making measure to set shifting under time conditions 10 minutes Selective Reminding Memory Test to measure hypothesis generation and response shifting 10 minutes Wisconsin Card Sorting Test to measure hypothesis generation and response shifting 10 minutes N-back Working Memory Task to measure working memory with increased load 5 minutes Simple and Complex Choice Reaction Time to measure information processing speed 5 minutes]
The last activity for my big day of neuropsychological testing was a personality assessment comprised of 350 questions rated on a sliding multiple choice scale from “very much like me” to “not like me at all.” These questions surrounded more emotional and mood related connections as well as assessing for antisocial personality characteristics, suicidality. hallucinations and delusions.

I was familiar with the testing as it was common to see it ordered during my stint as a psychiatric nurse. I was as authentic as possible while answering the questions. My doctor gave me the choice to complete the personality testing portion or not, stating my exhaustion from the day was obvious and those results wouldn’t play into my overall results a large amount. Still, I wanted as much data as possible for my doctors and caretakers to have a clear picture of the challenges I face on a daily, minute-to-minute basis so I plundered through the assessment fighting off the urge to rest my head on the desk.

[Image description: pexels.com high def image of a Rubix cube against a black background. Tilting the photo is Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome in white Papyrus font. To the right of the cube is the Eckhart Tolle quote: If the structures of the mind remain unchanged, we will always end up recreating the same world, the same evils, the same dysfunction. In a blue text box below the quote is the blog title: Neuropsychology Take II: Testing Day. In the left lower corner is OnlyinthisHead.com]
To Be Continued…

While no results were revealed the day of my testing, my doc danced around possibilities of completing the puzzle considering my trauma, history of mental illness, poor tolerance to stress, social disinterest with ineptitude, and numerous sensory/perceptive difficulties.

Just like the first appointment, the doctor used functional label terminology, stating I present with “high functioning Asperger’s type of ASD.” Considering such terminology is largely unhelpful, inaccurate, and harmful when describing the grand spectrum now known as Autism Spectrum Disorder, this reference makes me feel overwhelming alarm as opposed to validation. Using functional labels damages society’s approach to Autism, implying only those who function within certain societal expectations for leading a meaningful life may be considered functional aka valuable to society.

Please check out Functional Labels 101 by Feminist Aspie for accurate descriptions on why functional labels pose threats to the wellbeing of everyone along the spectrum. In my case, this statement indicated my practitioner was not updated and aware of the issues those who are #ActuallyAutistic face.

When I started this journey to diagnosis, I knew pursuing a suspected Autism Spectrum Diagnosis was likely to meet with controversy. Few local doctors understand the extent to which the spectrum now spans since the updates to the DSM in 2016. Sadly, regards to Autism in media and not-so-helpful awareness organizations perpetuate a stereotype, creating complex problems for those of us conditioned to put on a neurotypical mask. Awareness campaigns strive to redirect this misinformed characterization but ignorance still pervades.


[Image Description: #ActuallyAutistic Logo with hashtag in purple headed by a red, orange, yellow, green, blue and purple rainbow connecting two clouds in an arch.]
#ACTUALLYAUTISTIC, A HASHTAG COMMUNITY ORIGINATING ON TUMBLR INTENDS ON BEING A SAFE SPACE FOR THOSE WHO ARE ACTUALLY AUTISTIC TO SHARE RELEVANT POSTS ABOUT AUTISM WITHOUT BEING EXPOSED TO DISTURBING ABLEISM AND MISINFORMATION REGARDING THIS NEURODEGENERATIVE PROCESS.


Hearing my neuropsychiatrist say “high functioning” brought on a momentary instance of panic into my mind sphere. All the horror stories of people with Autism Spectrum Disorder abused and belittled for non-conforming behavior crowded my thoughts. My nervous system surged begging me to react and debate this term but then my anxiety and neurotypical conditioning to behave got in the way.


Please check out #RedInstead for more information regarding the difference between organizations that stand up for the rights of people with Autism versus organizations that promote harmful dogmas damaging to the quality of life for ASD population.

Original artwork by Keelan at Autistic-Space-Dragon on Tumblr http://autistic-space-dragon.tumblr.com/ [Image Description: Red background color depiction of a person with headphones and a sensory necklace in front of the Autism Awareness Infinity symbol. The picture is titled with: Listen to autistic people in all caps and footed by #REDinstead for Autism Acceptance] Photo courtesy of Tumblr #antiautismspeaks

The day was exhausting. I can’t be sure how many days it took to recover but I know it was almost two weeks before my mental and physical faculties regenerated from the energy expenditure. I barely get through interactions with those I love without crapping out let alone people I share no emotional attachments with. The doctor recognized I was exhausted by the day and trip so my follow-up appointment for the results was scheduled for over the phone in a month from my testing date.

The pressure I feel with my cognitive abilities slipping away like dandelion fluffs in the wind while a myriad of effects disrupt my flow lessened once the testing finished. The relief knowing an objective measurement of the decline I am experiencing was established refreshes my spirit for the rest of the journey. While it is a disheartening tale regarding loss of function, my hope is other Spoonies will read about my experience and also seek out neuropsychological testing to better define the impact of chronic illness on the mind’s ability to reason and function accordingly.  Next stop: The Results. Thanks for reading!

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Axon Optics Migraine Relief Glasses: Natural Relief from Migraines, Light Sensitivity, and Visual Snow

Disclaimer: I have been given this product as part of a product review through the Chronic Illness Bloggers Network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. Please see the Disclosures Page for more detailed information.

[Image Description: pexels.com high res image of a close up shot of assorted pills, capsules and tablets. The blog title and site name are overlaid in text.]

My Chronic Illness Life with Ehlers-Danlos Syndrome includes sizable portions of migraines, painful photophobia, and distracting visual distortions.

Avoiding exacerbating lighting triggers is an essential survival skill against these chronic processes! Today, I’m sharing my experience with Axon Optics Migraine Relief GlassesAlbeit prescriptions are often necessary for many, my case included, regaining control with nonpharmacological measures gives back quality life despite the battle against incurable disease.

Trigger Warning: The following video contains bright, flickering lights and loud noises.

Ever wonder what lighting sensitivities aka photophobia is like? Check out my video depiction of it below:

Whether it’s the stingy rays from the overhead fluorescent bulbs at doctor’s offices, blinding blue light from device screens, or even natural sunlight, I always recoil with pain! When this happens, an insidious level of damage begins to fulminate as my migraine sequelae start ripping and tearing away at my quality of life.

My chronic struggle is more sensitive than ever but with my original intro to Axon Optics in Fall 2016, I feel better armored for these battles! I frequently shout out enthusiastic social media endorsements because I believe in the power of this brand. I want other migraine sufferes to know there is hope.

This amazing product backed by scientific research provides an effective defense against difficult and often disabling symptoms associated with chronic migraines, photosensitivity and strange phenomena known as visual snow. I live with all of these symptoms, so when another opportunity came around to work with Axon Optics, I submitted my notice of interest right away!

Axon Optics’ Dalliance frames with indoor tinting on lenses for natural photosensitivity, visual disturbances and migraine relief.

For my second chance to work with this amazing brand, I went for a lighter weight style with an indoor lens. The Dalliance style met these needs with a Sashay of fashion on the side! Although I prefer my HANNIKs when outdoors or in brightly lit stores for peripheral coverage, my Dalliance frames serve great purpose, combinIing effective protection with beautifully functional style! 

The Cateye-esk, hot pink frames jive with my retroish style sense. This style is trendy but durable for every day, all day use. I love wearing them as a compliment to my galaxy leggings!

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Dalliance indoor lenses allow for whomever I interact with to see my eyes whereas the outdoor lenses of the HANNIK model shield my eyes completely. 

Artistic Selfie of the author wearing the HANNIK model available at http://AxonOptics.com

Typically, I avoid eye contact because of my neurodivergences; however, there are times when eye contact communicates a message my voice cannot, especially with medical practitioners. Because these glasses help to cut back on my distraction levels due to visual snow and other strange, non-psychiatric visual disturbances, it’s easier communicating my needs, not only with health care providers but also with my family/caretakers.

Between home, medical appointments, and social meetings, the Dalliance model Migraine Glasses from Axon Optics improve my chronic illness life by leaps and bounds! I avoid untoward consequence of happenstance lighting exposures while also complimenting my attire. The indoor lens allow the sincerity in my eyes a platform if needed. All day use helps me save spoons normally lost to lighting triggers, distracting visual disturbances, and painful photosensitivity.

Overstimulation to my sensory experience via lighting and visual disturbances dominoes into a tailspin of chronic symptom flares with days if not weeks lost in the fog of recovery. These migraine glasses provide a much needed barrier against offensive lighting.

The effects of photophobia, chronic migraines, and visual snow are poorly understood. Still, integrative research indicates sufferers live with an over sensitized neural pathway between the eyes and the brain. Continual transmission of inappropriate pain signals via the thalamus of the brain creates a situation of sensory overload. Much like a rubber band stretched beyond its limits, so is the thalamus when it comes to interpreting the constant barrage of pain signals in response to normal stimulus. Eventually, the thalamus stretches too far and gets stuck in high alert mode. This makes for a great deal of stress and subsequent damage to the delicate homeostasis of the chronically ill body. 

My Axon Optics Migraine Glasses give back quality of life by shielding my neurological system from such painful stimulus. This allows me endurendurance for activities I’d otherwise forgo because of painful triggering. Consistently, regardless of which style of Axon Optics I wear, my practitioners give kudos to my efforts to naturally manage my issues with migraines, photosensitivity, and visual snow.

Hot shot of yours truly sporting my new #AxonOptics Migraine Glasses. #prettyinpink These are the Dalliance style with indoor lenses and pink frames. I am super-duper pumped for the opportunity to demo these glasses free for honest review through my membership with @chronicblogs Be looking for my full review up on OnlyinthisHead.com in the next couple months! In the last year, I've sat in roughly 30 different doctor's offices and every last one used fluorescent lighting sources. As if these appointments weren't painful enough! Fluorescent lighting is a big trigger for not only my migraines but also my sensory issues. The flickering and artifical brightness makes for misery business when trying to clearly communicate my needs. Something about those tubular beams of unnatural lighting activates my my brain fog something fierce! Since getting the chance to review these glasses, fluorescent lighting is a barrier I now succeed! These glasses are the real deal! Not only do they look super-duper cute but they also help me get through appointments without triggering my migraines, protecting my sensitive eyes from the assault of fluorescent lighting. At the same time, the lenses are not so dark people can't see my eyes nor is it difficult to see while wearing them in lower lighting. Just taking care of this small factor in my chronic illness life with ehlers-danlos makes a big difference overall in this journey! I cannot recommend Axon Optic's line of migraine relief glasses to others with lighting sensitives enough! [Image Description: selfie shot of Dawn in the doctor's office. She has long, medium brown hair with a large grey streak in the front, parted to the side with the bulk of her hair laying along one shoulder. She is wearing a grey sweater and pink framed glasses with tinted lenses. She is looking up defiantly and the reflection of fluorescent lights are in the lenses. In the background is a blood pressure cuff attached to a cabinet with a computer underneath.] #chronicillnesslifestyleblogger #Migraine #photosensitive #Ehlers-DanlosSyndrome #migrainerelief #freeforreview #ilovemyaxonoptics #flourescentlights #theseaintcheapsunglasses

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Visual snow deserves a special mention as it is a rarely reported phenomenon.  I experience visual snow as though my vision gets poor reception, much like the fuzziness when television reception is poor. Sometimes these disturbances include large blotches and shadow flashes, making life strange and difficult to process at times. Using my Axon Optics allows enough reprieve from these stressful symptoms for me to interact with my environment more comfortably.

IF YOU’VE GOT HEAD SPLITTING, PICKAXE MIGRAINES MADE WORSE BY LIGHTING SENSITIVITIES, DO NOT PUT YOURSELF THROUGH UNDUE STRESS ANY LONGER!
AXON OPTICS MIGRAINE RELIEF GLASSES PROVIDE A SOLUTION SUPERIOR TO SUNGLASSES AND CHEAPLY TINTED LENSES BY BLOCKING ONLY THE LIGHT FREQUENCIES PROVEN TO TRIGGER problems!

Axon Optics offers a surplus of styles to suit any taste. The company publishes solid tech backing up efficacy of migraine relief glasses as a medical device. Axon Optics photosensitivity glasses are customizable with any prescription. Axon Optics even offers an option to send in your own frames for custom lenses. Prefer contacts? Well, Axon Optics carry those also!

From one Spoonie to another, these migraine glasses bring back accessibility lost to light sensitivity, chronic migraines and visual disturbances. These provide effective protection and relief without the untoward side effects! Do yourself a favor and check out Axon Optics today for 100% Spoonie approved, natural migraine and photophobia protection! These glasses will change your life and save spoons!!!


Products to Improve the Quality of Chronic Illness Life | Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome | Chronic Product Review Series | [Image Description: High res image of a female sleeping on a couch in front of a large window. The Blog Title and Series Title overlay the Photo]

Thanks for reading my review of Axon Optics Dalliance migraine relief glasses! Here at Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome, I review products geared towards improving quality of life despite the effects of an incurable disease. I’m dedicated to providing authentic perspectives on the grand spread of products marketed to those of us living with chronic disease. I only accept exceptional product offers!

Please check out the Products to Improve the Quality of Chronic Illness Life Review series to see more Spoonie products and subscribe here for updates to this series as well as all chronic illness related content as its published!

If you’ve got an exceptional product you’d like me to review, use the following contact form!

May your doctor’s listen to understand.

May your treatments work without folly.

May you get all the rest you need.

May you feel safe and secure no matter where you were before.

May this life take it just a bit easier on you when you need it most.

<3 May you have quality of life  even without a cure <3

See my other Axon Optics Review by clicking the picture

immunizeLABS: Products to Soften the Brunt of Chronic Illness Life with Ehlers-Danlos Syndrome

Disclosure: I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. Please see the Disclosures Page for more information.

If you’ve not caught on, I am open to trials of alternative treatments to manage the many symptoms experienced in Chronic Illness Life with Ehlers-Danlos Syndrome. In conjunction with medical modalities, I balance between both worlds for the best quality of life possible in light of chronically incurable disease. Today, I’m sharing my experience with immunizeLABS’s line of supplements to manage issues with underlying infections, poor immunity, and inflammatory pain associated with a grand myriad of chronic illnesses alike.
immunizeLABS: Products to Soften the Brunt of Chronic Illness Life | OnlyinthisHead.com Chronic Illness Life with Ehlers-Danlos Syndrome [Image Description: pexels.com photograph close up in a laboratory with beakers and jars in the background. There is a text overlay “immunizeLABS: Products to Soften the brunt of Chronic Illness Life.” At the bottom of the photograph is the website title and URL: Chronic Illness Life with Ehlers-Danlos Syndrome www.OnlyinthisHead.com]

Medical Disclaimer: Always consult with a trusted practitioner before employing any alternative treatment. This is a product review, not medical advice.

To my surprise, the immunizeLABS sent the entire kit #4 for my trial (I was only expecting one product)! Along with the shipment was a personal letter from the company commenting on my chronic health struggles shared here in addition to the supplement’s instructions. This company is a grassroots outfit making waves in the chronic illness world through word of mouth and the personal experience of the proprietor and spouse as they battled the medical system for an effective solution against Chronic Fatigue Syndrome/ Myalgic Encephalitis.

My one-month trial of immunizeLABS products included TWO bottles of PainRelief, a bottle of Shield, Boost, oralMiracle and Nasal Spray. Use the coupon code DAWN10 to get 10% off at immunizeLABS.com!

Their story sounds like portions of my own as my experience in finding answers, let alone treatment for my chronic problems is often hit and miss. Through perseverance for a better quality of life, the immunizeLABS story is one of success because the protagonist found a treatment allowing for a quality of life unobtainable through the conventional system.

The reasons I wanted to try out any of these products are numerous. I have a long-term strep infection, history of mononucleosis and a borderline western blot for Lyme disease as well as daily bouts of gastrointestinal distress related to eosinophilic gastritis, leaky gut, IBS, biliary dysfunction, a poorly function pancreas and more. My immunity is seriously lacking in helpful defenses as a result of innumerable constituents related to chronic disease. EDS is a multisystemic, complicated disease process requiring meticulous considerations from a nutritional aspect. immunizeLABS formulas are designed to make up for the variety of impaired detoxification pathways often present with worse effects in the chronically ill body.

The first ingredient to seize my attention in immunzieLABS’s concoctions was Colloidal Silver. As a child and into adulthood I did not have access to medical care unless it was an emergency situation so often times Colloidal Silver was the only treatment available for minor infectious processes. Usually, there was never a need for further treatment. I used this naturopath antibiotic to treat a damaging middle ear infection in my hubs with an amazingly effective outcome when I was sure he might lose his hearing. Throughout my twenties, I used Colloidal Silver and mega doses of Vitamin C anytime hidden infections stirred my lymph nodes into swollen little beans. In my nursing career, a medical doctor prescribed Colloidal Silver for my patient with previously active resistant infection put into remission by the treatment. Despite my experiences with the benefits of Colloidal Silver, scholarly publications on the efficacy of use are few and far between.

The controversy over Colloidal Silver according to WebMD cites the FDA’s position on Colloidal Silver in 1999 as “an unsafe and/or ineffective supplement of no medical use.” The risk for argyria comes from evidence indicating Colloidal Silver is not eliminated from the body, causing a building up in tissues of organs with the result observed as blue skin. There are cases of this well-documented and worth reading before considering Colloidal Silver containing supplements.

In all my homeschooling years surrounded by alternative therapies, I never encountered anyone suffering from argyria with daily use. In all my years of intermittent use, I’ve never turned blue.  Quality is an important factor in choosing a Colloidal Silver containing supplement as WebMD notes “People who produce colloidal silver at home will likely not be able to evaluate their product for purity or strength.” This comes into to play with the products available at immunizeLABS as their Colloidal Silver is laboratory tested for quality assurance.

Contentions over Colloidal Silver present interesting points noteworthy in this impartial review. If functional medicine is your thing, Dr. Axe’s article on the benefits of Colloidal Silver supplements is a good place to start when looking at the advantages. Personally speaking, the relief I note with silver versus antibiotics stands as enough evidence for my own efficacy of use. Always talk with your practitioner and exercise appropriate due diligence on such matters before starting any supplement protocol. Alternative treatments are not for everyone and do pose risks better avoided by working with a trusted practitioner. That said, let’s get on with the review!

Here is an artistic picture edited for this post of the products contained in my kit. There was an additional bottle of the PainRelief not pictured but much appreciated as I’ve continued to use it for really bad pain days! |immunizeLABS: Products to Soften the Brunt of Chronic Illness Life with Ehlers-Danlos Syndrome | OnlyinthisHead.com | [Image Description: original photograph by Dawn Meeks of all the immunizeLABS products in blue tinted bottles. The larger bottles are glass and the smaller bottle is plastic with a nasal tip. The bottles are arranged in a triangular pattern. There is a fruit dish with oranges in the background. The table is wooden. The wall in the background is red. From the reader’s left to right is OralMiracle, PainRelief, BreatheEasy Nasal Spray, Boost and Shield.]
Each of the products in my trial presented clearly labeled with contents and amounts of ingredients making it simple to ensure no allergy triggers were present. Impressively, the integrity of the formulas is protected from light sources which would deplete the potency. The drinkable formulas came in dark blue glass bottles and the nasal spray contained in thick, blue plastic. This simple touch shows this company is dedicated to quality assurance. immunizeLABS gained my respect with this all too often disregarded detail.

[Image Description: Photograph of Dawn Marie, content creator and blogger at OnlyinthisHead.com, holding a plastic water bottle containing immnizeLABS PainRelief, Boost, and Shield mixed with water for a once daily dose. The author has long, dark hair with a gray streak pulled into a side bun. She is wearing a black sweater. She is smirking at the camera from an angle and has her eyebrows raised. In the background is a kitchen scene with a white stove with overhead microwave, a white refrigerator, and light wood cabinets most prominent in the shot.]
My instructions were to take 1 tablespoon of the Boost and Shield each with 2 tablespoons PainRelief on an empty stomach with a bit of water in the mornings. See the video below demonstrating how to mix these formulas for a quick, daily dose. Each of the formulas is flavored as chocolate and the liquids look chocolatey but I found the taste to be less chocolatey and more earthy with a strong taste of cacao powder, a superfood ingredient packed with antioxidant power in all these formulas.

Waiting twenty minutes before ingesting any foods or liquids as instructed proved a beneficial practice. Within that sliver of time, my stomach bloat reduced considerably and more routine elimination patterns emerged. Doing this helped me experience less immediate side effects of nausea and stomach spasms when my medications hit my stomach at the start of the day. 

With a stroke of luck, I received my trial of the products right when a big wave of sinus infections ran rampant through my home.   The Breathe Easy Nasal Spray is for as needed use at the first sign of a migraine, sinus infection, allergen exposure and so on. Immediately, the spray became an effective treatment over the days my body fought the infection. Within approximately ten minutes of administration, my sinuses unblock, allowing me to breathe normally for four hours. My tribulations with the sinus infection only lasted 2 days using the Breathe Easy Nasal Spray, Boost, and Shield to bolster my immunity against an infection.

Since applying this protocol, my lymph nodes reduced from their routinely swollen size and my cyclic night sweats reduced from 1-2 weeks a month to 2-3 days! I give Shield, Boost, and the BreatheEasy Nasal Spray all the credit for correcting my immune system’s tendency to work against my body, This is truly phenomenal as infections usually set off a process in my body prolonging the illness for weeks whilst aggravating my underlying chronic issues!

Speaking of, I’ve continued using the spray at the first sign of a migraine with helpful results. My migraines still occur but using the spray helped diminish to the severity and days in bed. I also use it to combat my allergies to our 4 dogs and 3 cats. Sure, I take a daily antihistamine to treat my pet allergies but when I feel the need to bury my face in the furs of our fur babies, my nose immediately stuffs up while my eyes swell. Not loving our animals is not an option! Using this spray immediately when this happens saves me from hours of itchy, watery eyes while allowing me to quickly recover the ability to breathe through my nose. Then, I can go back to nuzzling with complete relief of symptoms for four hours or more!

The PainRelief formula relieved my pain levels significantly throughout the day, especially when it comes to the inflammatory pain I experience from arthritis and generalized joint swelling. The cumulative effects of EDS on my musculoskeletal system what with random subluxations, dislocations and over extensions/flexions take the most responsibility for my chronic pain but there is also the case of my constant battle with gastritis as well. Although I take medications to treat these different pain types, there is always an underlying level left untouched. It is a deep sense of swelling I can only describe as insidious.

Only one hour from my first dose of PainRelief, I noted those untreated levels of pain converting to a less arduous burden upon my energy levels! Well into the month trial, I felt more energetic with less pain thus allowing me to use my spoons for things like physical therapy, painting, planning our move and spending time with loved ones. I did the dishes for the first time in nearly a year because the decreased pain levels yielded more energy! I really enjoyed seeing my pain levels decrease without the increased side effects I feel when managing my pain solely with prescriptions.

immunizeLABS PainRelief for pain and inflammation Supplement Facts

It is no wonder the PainRelief formulas work well for so many different aspects of pain. The ingredients are known throughout holistic health communities as powerful combatants against inflammatory and neuropathic pain types. I was particularly happy to see the inclusion of Curcumin and Ginger oil as I’ve used both these remedies for years when relief from conventional medicine failed my case.

Another outstanding ingredient in the PainRelief Dietary Supplement is MCT oil. I’ve used MCT daily for over a year, finding it an easy way to get in important fats without the bulk of food that ordinarily exacerbates my symptoms. The amino acid content in PainRelief is remarkably concocted to deliver proteins normally obtained through diet in an easy to digest form to help regulate the bodies dysfunctional metabolism.

Nearly every time I require hospitalization, I end up on total parental nutrition to correct amino acid and other nutrient deficiencies which I’m prone to develop. Each time this occurs my pain levels rocket straight through “Level 10” into infinity! Once I get the boost of nutrition to set things right again, my pain levels and other distressing symptoms wane into remission. Over the last year, using supplements such as immunizeLABS to support my deficient nutrition when I can’t handle a typical dietary intake is unquestionably keeping me from the fate of a feeding tube, for now. The amino acid combinations in the drinkable formulas in my kit worked well against the multisystemic, painful and distressing symptoms I experience on a daily basis.

immunizeLABS OralMiracle Dentist-Approved, Kills Germs and Bacteria, Reduces Plaque, Promotes Remineralization, Eliminates Bad Breath, Whitens Naturally. Peppermint Flavor

I was excited for the opportunity to try out the OralMiracle Mouthwash because I cannot use alcohol based, commercially available products due to pain, mucosal dryness, and sensitivities to other additives. The instructions were to swish with 2 tablespoons every night at bedtime after brushing my teeth and avoid drinking any more fluids after the practice.

Using the OralMiracle Mouthwash mouthwash, my oral ulcers healed without resurgence as I pen this review. The swish is soothing to my often sore mouth and swollen tongue. The taste is gentle and pleasant instead of burning and agonizing as it is with alcohol based formulas. It only takes a diminutive amount so I am still using the formula almost 2 months after it first arrived! My teeth felt cleaner and my teeth showed whiter. OralMiracle Mouthwash also helps with my temperature hypersensitivity issues with my teeth. This is just one of the many products immunizeLABS offers to treat the various symptoms of chronic disease.

immunizeLABS features SkinMist, a skin care product reasonably priced at $40 USD. This treatment is designed to moisturize and protect the skin without all the harmful chemicals found in nearly all commercially available health and beauty products. Another innovative contribution I’m interested in trying is giRelief, a formula taken as a maintenance supplement with increased dosages to treat flare-ups of “Colitis, Ulcerative Colitis, IBS, Crohn’s, Diverticulitis, Ulcers, GI Bleeding, and Hemorrhoids.”

immunizeLABS Healing Face Body & Hair Mist | Toxin-free!
immunizeLABS GiRelief Reduce Pain Reduce Inflammation Stop Bleeding

The cost of the Kit #4 is $310 USD but the folks at immunizeLABS are offering my readership an 10% discount using the coupon code DAWN10 at checkout! These are effective products to manage the wide variety of symptoms I experience. If you are looking to invest in alternative symptom management therapy that works, immunizeLABS is a quality assured option. If this is too big a commitment, immunizeLABS also offers each component of the kit for individual sale at a lesser price.

My experience with immunizeLABS was outstanding! I loved the personal touches to my package as well as the benefits each formula offered. For those with chronic illnesses interested in trying something new, immunizeLABS offerings come with quality assurance and rave reviews. For Chronic Illness Life with Ehlers-Danlos Syndrome, the benefits delivered by immunizeLABS products are unmistakably palpable!

Use coupon code DAWN10 at checkout to receive a 10 percent discount! | immunizeLABS: Products to Soften the Brunt of Chronic Illness | Only in this Head.com Chronic Illness Life with Ehlers-Danlos Syndrome | [Image Description: Pexels.com photograph of a night sky with a burst of light yellow and orange fireworks. The blog post title and blog name is overlaid in text.]

Thanks for reading my review of immunizeLABS! Here at Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome, I strive to provide my readers straightforward reviews on products to enhance quality of life in spite of incurable diseases. Please subscribe here for updates to my Products to Improve the Quality of Chronic Illness Life serious as well as other chronic illness related content!
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Product to Improve the Quality of Chronic Illness Life | Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome | Chronic Product Review Series | [Image Description: High res image of a female sleeping on a couch in front of a large window. The Blog Title and Series Title overlay the Photo]

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Retraining my Brain with The Gupta Programme

Oh, my amygdala!

We’ve danced this exhausting dance too many times before. There is no use beating around the bush, we both know these overreactions don’t help.

Yes, there are things I want you to attend to but please do not set off alarm systems for every petty variation in my experience!

It’s exhausting and I want it to

STOP, STOP, STOP!


Disclaimer: I received this product free for honest review as a part of my membership with Chronic Illness Bloggers Network. Although this product was a gift, all opinions are my own and in no way influenced by the compensation of this product. See the Disclosures for more information.


What is the Gupta Programme?

The Gupta Programme is an intensive therapy used to retrain the brain’s responses to physical symptoms from a state of panic to a conscious state of mindful wellness. The creator of this therapy is Ashok Gupta, self-proclaimed “former” victim of Chronic Fatigue Syndrome/Myalgic Encephalitis. After falling ill ten years ago at the hands of CFS he was able to reverse his symptoms after three years of illness.  Ashok details an intensive fifteen years of research and personal experience resulting in the fruition of Amygdala Retraining method, the core action of the program’s principles.

The Gupta Programme is designed for those living with CFS/ME, Fibromyalgia, Multiple Chemical Sensitivities, Chronic Pain conditions and Anxiety. According to the retraining’s philosophies, over-reactive conditioning over time causes maladaptive changes to our alert systems, placing our neurology in a constant state of fight or flight. In Gupta’s evidenced-based theory, reconditioning the Amygdala’s emotional reaction to physical symptoms will decrease time spent in hyper alert states; Thereby, calming the body’s defenses to non-life threatening stimuli and allowing for healing.

For my demo of The Gupta Programme, I wanted relief of anxiety; However, I hoped for help with managing symptoms of chronic fatigue, chronic pain, chemical sensitivities, and POTS. While there is a definite physiological foundation to all these issues, two things are for certain: my system tends to run in overdrive regardless of the situation and this only exacerbates all of my symptoms further. Finding a method to control the overdrive reactions is essential to managing Chronic Illness Life with Ehlers-Danlos Syndrome. This intensive program is an exceptional way to install “mind over matter” routines in defense from the symptom assault cycle common to chronic illnesses. What you get with The Gupta Programme is formalized guidance on applying regular meditation practices and techniques akin to cognitive behavioral therapy. The different methods presented help manage “symptom thoughts” in a more productive manner from a neuropsychological perspective.

The Gupta Programme Website lists the DVD Programme with three months of personal group coaching by Ashok for $250 USD including the following features:

  • Full DVD Home Study Course sent on purchase
    • I received a full workbook with all DVD materials in printed form along with worksheets and motivational wall hangings.
  • 12 Weekly Webinars in a group and access to Recordings
  • Opportunity to ask Questions in text form
  • Money Back Guarantee after 6 months of use, and for up to 1 year (no questions asked)
  • You can catch up on recordings of current Coaching series, or join the next one
    • Gupta recently employed the use of Facebook Groups and Facebook Live to the program to increase the community feel using the program and for more accessibility to all who take on this intensive response retraining protocol.

On the Gupta Programme’s Youtube Channel is a detailed explanation of Ashok’s experience with CFS/ME, Fibromyagilia and Multiple Chemical Sensitivities embedded below for a free preview of what to expect with the program.

I found The Meaning of Life Experiment Videos on Youtube a few years ago. This series explains the mindfulness perspective of consciousness. I embrace consciousness development, anything involving self-improvement and the goal of peaceful harmony with the universe. Gupta did a wonderful job presenting on these topics with this series of videos to accompany The Meaning of Life App available on the Google Play Store here or on Itunes here. The Meaning of Life Youtube channel is updated regularly with new content aired on the Gupta Program Facebook Live Series. This program is religion neutral and can be combined with any spiritual practice as needed.

The Amygdala Retraining Technique is a relatively simple cognitive action done over and over to recondition an injured Limbic System into moving from a state of panic to one of mindful wellness.

The technique is easily applied to any chronic illness concerning cognitive neurology with event processing. Utilizing these methods reduces time spent in hyperdrive on a neurological level, soothing the assault on the body from an “all systems go” level.

Image Credit www.guptaprogramme.com [Image Description: sagittal view of the human brain with the cortex, thalamus, and amygdala pointed out.]
Gupta implores program attendees to put away any preconceptions and resistance to the program for a six month period while instituting the practice into a conditioned response. During the webinars, he frequently reminded my group not get hung up on timeframes for “getting better.” He recommended taking a year to work diligently on these methods for the best results. Above all, Gupta reminded us often there is no pressure in this space to rush into wellness. The supports employed by the three-month program provides a grand cornucopia of tools for a lifetime of healing so no need to feel pressure while completing the program at your own pace.

How The Gupta Programme Helped Me

From the beginning of my more serious health problems, recommendations to reduce anxiety and stress levels resounded long before symptom management or even diagnosis. For awhile, I thought they might be right. Many years of antidepressants and antianxiety medications left me feeling like a zombie until finally, I quit them all. It was only then I realized these medications weren’t right for me, a fact proven recently with genetic testing revealing issues with drug metabolism of SSNRIs, SSRIs, and certain benzodiazepines. No wonder I felt so horrible during those years!

From a rather young age, I remember being excitable. I over-reacted to life by nature whether it be with joy, sadness, fear or trepidation. I didn’t know how to behave unless I went over the top with the reaction I thought most appropriate. As an adult, I constantly struggled with knowing how to react as within a few years of adulting I realized my reactions were viewed as odd. Add in a lifetime movie dose of traumas and there’s the perfect recipe for How to Make a Chronic Illness Worse with Anxiety.

Despite my illnesses, I am all about health and wellness activities. I’ve used meditation for many, many years in various forms. Before I hit my big injury in 2015, I sported a cool hour Yoga and Pranayama practice daily. I even continued a modified practice until I could no longer stand due to POTS and now, the practice is further tailored to accommodate the significant decline in my malady over these last few years. Over my lifetime, between flares of illness and periods of wellness, I was active in life and work. I took my health struggles like the waves you jump through to get further out into the ocean, intuitively knowing I absolutely must try harder if I were ever going to get past the backpedaling of the curls. I did not account for the undertow at work in my genetics, getting stronger with each inapplicable assault of adrenaline coursing through my body. I didn’t see the predisposition to injury and lasting debility until it fell upon me with harsh consequence. The peaks and troughs of my illnesses continue but through it all, I learned no one method is adequate in managing life with chronic illness.

Employing The Gupta Programme helped me reintroduce healing practices into my life, making my anxiety work for me instead of against me. When I gain adept knowledge, I recall the information much like a supercomputer processor, taking all the little bits of data received and then translating it into the highest probability based on my knowledge base. While this ability is an enormous benefit while advocating for myself using my previous nursing experience, the same practice works to unnerve me with all the possibilities flying up into my conscious thought haphazardly causing undue stress on my body and mind. It is for all these reasons my participation in the program helped me regain some control in life by retraining my thoughts towards ideas of wellness rather than impressions focused specifically on my debility.

For me, The Gupta Programme was the boost I needed to get back to employing more dedicated and mindful meditation practices.

Yes, I still have symptoms. What changed is I use the techniques from The Gupta Programme to help me stay calm when my symptoms flare rather than letting my anxiety in on the chaos to make things worse. This physiological cascade of anxiety in the long term spectrum results in further damage. Using Gupta’s techniques, I manage my reactions to symptoms through a conscious effort, repetitively employed and eventually integrated as a habit on my sub-conscious level. This retraining reframed how I view my illnesses and exacerbations of symptoms into a more productive perspective. My mind can now take breaks from the constant symptom chatter so I may refocus on crucial pursuits like spending quality time with my loved ones, meditation, creating and writing.

Simply said, employing this program provided the mental reset I so badly needed since my health went downhill again.

It is important to address any behavior modification plan with your pertinent healthcare providers. I presented The Gupta Programme to my therapist and nonsurgical orthopedic doctor, ensuring this program would be okay for me to employ. Both agreed it was a good route for me to take in managing my disease processes. Ehlers-Danlos Syndrome is a lifelong, incurable diagnosis with countless surging consequences throughout the entire body. My vitality is sensitive to stress levels. Quelling the inner storm of fear when aspects of my illness take over is essential to survival.

"Anxiety does not empty tomorrow of its sorrows, but only empties today of its strength." -Charles Spurgeon | Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome | onlyinthishead.com | [Image description: close up high res photo from pexels.com of a water drop in water with the ringlets flowing outward. The Charles Spurgeon quote: Anxiety does not empty tomorrow of its sorrows, but only empties today of its strength. overlays the top of the photo from a light blue with dark trim text bo. The bottom of the photo has Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome written in light blue font.] Image credit pexels.com
“Anxiety does not empty tomorrow of its sorrows, but only empties today of its strength.” -Charles Spurgeon | Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome | onlyinthishead.com | [Image description: close up high res photo from pexels.com of a water drop in water with the ringlets flowing outward. The Charles Spurgeon quote: Anxiety does not empty tomorrow of its sorrows, but only empties today of its strength. overlays the top of the photo from a light blue with a dark trim text box. The bottom of the photo has Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome written in light blue font.] Image credit pexels.com
In honest review, The Gupta Programme is an excellent resource for those dealing with any chronic illness worsened by states of anxiety. The theories behind the retraining are substantial when understanding the physiological mechanisms set forth by the body in reaction to stressors. There’s no denying the benefits the retraining offered in managing my anxiety with greater success, especially when it comes to my body flaring out of control from problems related to EDS and POTS. By the end of the 3-month program, I could better recognize when my worries were getting the best of me and stop the process. I am not cured but I definitely got some recovery. Gupta’s methods, effectively applied, decreases the stress response and improves quality of life from an important, often neglected viewpoint of the mind-body connection. Although the program is over, effects of the retraining remain. The Gupta Programme is the perfect adjunctive therapy for regaining control of life lost to illness.


Thanks for reading my review of The Gupta Protocol for Anxiety!

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This review is a part of the ongoing series here at Only in this Head: Chronic Illness with Ehlers-Danlos Syndrome in which I highlight exceptional products for managing chronic illness life.

My goal is to provide valuable information thru chronic illness product reviews whilst intertwining the account of my EDS history and diagnosis. My hope is my work will serve as a beacon to the undiagnosed Zebras looking for examples of Zebra life as well as providing the chronic illness community with real erudition on the innumerable goods marketed to those enduring disease and debility. While an EDS diagnosis doesn’t include a cure, employing multiple strategies improves quality of life, invariably improving the overall prognosis of this insidious process. My mission at Only in this Head is providing sincere product reviews the chronic illness community can trust ❤

Please subscribe here for email updates to this site and check out my other chronic illness product reviews here!

Chronic Illness Life with Ehlers-Danlos Syndrome: Health Care Induced PTSD

Health Care Induced PTSD is an incidence those with chronic illness all too often encounter on the road to diagnosis and even after diagnosis is established.

Some health care providers jump straight to conclusions with damaging biased judgments against us before we even state the whole spectrum of issues.

We go through gas lighting and medical neglect when the routine battery of lab tests doesn’t show the problem.

flame-fire-oven-light-77502
[Image Description: pexels.com photograph with a close up shot of a gas stove burning against a black background. Overlayed in white text is: Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome, Gaslighting is a form of manipulation that seeks to sow seeds of doubt in a targeted individual or members of a group, hoping to make targets question their own memory, perception, and sanity. Using persistent denial, misdirection, contradiction, and lying, it attempts to destabilize the target and delegitimize the target’s belief. Source Oxford Dictionary. At the bottom of the photo is a oval text box with black font: Health Care Induced PTSD www.onlyinthishead.com]
Diagnoses like depression, anxiety and somatoform disorders threaten detraction from the true malfunction. This puts us in unsafe waters in the sea of healthcare providers one encounters when chronically ill.

My own experiences with gas lighting tactics from healthcare is extensive. After the Ehlers-Danlos Syndrome and POTS diagnoses became obvious, there was a gauntlet to endure in order to finally recieve my official diagnoses. Not to forget about the twenty-some years of trying to get help from the medical system. It actually baffled me at times because I did not understand what it was about me that made these practitioners question the validity of my claims.

I was a hard-worker when I was able to work. I took all the steps to get control of my lifestyle factors and then some. There were times I was in impeccable superficial health. Unfortunately, this seemed to work against me when my system suddenly seized up and through me into painful crisis. All too often I was treated improperly or even poorly because my local doctors did not know what was wrong with me but there egos were too big to just admit they no interest in trying to find out my underlying problem. I was labeled, demeaned at times, and as in effect I avoided the doctors as much as possible for longer than I should’ve in consideration to the issues now uncovered with the VEDS diagnosis.

After my sudden, acute kidney failure which was likely brought on by my undiagnosed POTS, I went to my doctor’s office for my follow-up. I still felt horrible and the medicine prescribed in the hospital gave me the worst headaches. I expressed to the practitioner how I was still not doing well at all and requested help in filing for short-term temporary disability until we could figure out what was going on and get me better, again.

The practitioner looked me dead in the face and said she would not “risk her license” to help me with the request. 

I was shocked. Never did I ever feel judged so wrongfully without rational reason as I did in that moment.

At this point, my medical history was packed full of numerous medical crisis and eventful hospitalizations except for the prior two years. During that time, I avoided health care all together after yet another three week hospital admission leaving more questions than answers. That admission changed how I express and deal with the daily, often constant stomach pain so to the point I choose pain untreated rather than be accused factitious for my pain poorly managed.

I made diet changes and took on dedicated Yoga/Meditation practice. I hit the wellness forums online hard for suggestions in managing all my whack-a-mole symptomsThis made no difference to the practitioner as if I’d been a “problem patient” all along.

I could barely stand without the severe pain in my head from the medicine. I was 34-years-old going into kidney failure for no good known reason. Suddenly, all my gastrointestinal issues returned, my face was broken out in some kind of Lupus-like rash and I felt awful. Everything hurt inside and out. The medication prescribed on discharge was to help my chest pain but it was impossible to do anything around the headaches! This was after being functionable by all appearance beforehand. I just woke up one day with palpitations and shortness of breath that turned into severe chest pain and carpopedal spasms by the time I finished work! I wasn’t trying to slide a sly one past this judgemental practitioner. I just needed help.

My cardiology follow up showed “unusual orthostatic issues and tachycardia” with the recommendation for my primary to order a rheumatological consult. She blew this recommendation off with a flippant “We are not sending you to rheumatology with a negative ANA.”  Even though all this information was present and correlated with documentation, I was treated as though I were drug seeking party-sized prescriptions of narcotics for recreational use rather than answers for my unusual health crises.

My shock led me replying to this brash retort with “I understand why you would feel that way.” I hung my head as if I did wrong and should show shame. I don’t even remember the rest of the appointment. I left choking in tears as I slowly processed what just happened. Once I got home, I proverbially kicked myself multiple times for not putting this awful practitioner in their place. It was here when I gave up on the medical system and treated myself. I was jaded.

I quit the medication and never went back to that practitioner’s office. I managed okay with peaks and troughs over the next three years until an injury set off the most debilitating decline as yet in my years of illness.

The decline led to my diagnosis, so for that I am grateful but there is no excuse for the traumas inflicted upon my psyche by the medical system, a system I was employed in, just because my practitioners were not knowledgeable enough to see the whole picture. I went on with life slowly working my way back up to a fairly functionable level until my insidious EDS struck again. This time, I haven’t returned to any level of previous functioning and should not expect to as these things started breaking down long ago.

Progressively debilitating chronic disease is nearly impossible to reverse once the damage is done. I feel anger when my mind drifts back to this example of trauma. The darker side of me wishes this practitioner would one day experience the pain of being regarded as feigning when being sincere and in need of help. I don’t really want for this but the thought comes up nonetheless.

The experience shook me into an obstinate state of denial. From that time until my injury certain red flags in my health shot off but I ignored it telling myself all the pain and other more distressing symptoms were a figment of my overactive imagination. This dangerous delusion led to my thinking it would be okay to go back to floor nursing after getting out of that game four years prior due to shoulder injuries from patient care. Interestingly, it took a work injury I could not recover from for doctor’s to final recognize there was something more global at work in my cases beyond all my flares of “idiopathic” illness.

This is one small, short story to stand out as an example of the multiple instances of negligent medical care I endured throughout the years and at times even unto now. This story is mine but this stagnant behavior on behalf of the medical community is not uncommon in the countless stories found across the chronic illness blogs of the world.

For instance, a talented Canadian singer/songwriter, chronic illness awareness blogger and fellow Zebra, Rosie Guedes shares her story of gaslighting in the mental health care received and how it still affects her ability to gain access to medical care despite a world renowned physician’s diagnosis of Ehlers-Danlos Syndrome and Autism.

I’ve followed Rosie’s story for a couple years now when I began investigating the similarities between myself and what is now called Autism Spectrum Disorder. Rosie’s awareness videos and (affiliate link, see disclosures) her books (click to view and/or purchase) were a huge help in validating my experiences as a person under the radar but on the spectrum. It was only by chance she was a Zebra as well but good luck! I enjoy Rosie’s artistic works and activism efforts through sharing her journey, showing bravery in speaking out against the barriers to care she experiences.

Because of the difficulties getting appropriate care, Rose is at times afraid to use the emergency room for fear of being misunderstood despite dangerous symptoms and a declining condition. Her body is in failure mode and no one has any answers except pointing at the anxiety created by health care induced trauma. Family and friends are helping her promote a crowdfunded a trip to the USA to seek a more competent care. She has two children and a hubs who love and need dearly. The whole family is scared for Rosie’s wellbeing because of lack of EDS and POTS awareness.

Please consider giving to her GoFundMe for this effort and/or completing The Lemon Challenge for Ehlers-Danlos Syndrome Awareness. I will be doing the Lemon Challenge just as soon as I get my hands on a lemon!

Health Care Induced PTSD creates barriers to care, lined with sharp knives to cut those who need help the most but do not have the strength to withstand the pain, panic and isolation caused by practitioners who haphazardly wield a biased battleaxe of non-specific diagnoses instead of completing due diligence to help suffering patients.

If you are suffering because of Health Care Induced PTSD, you are not alone. Unfortunately, this is more common than not but if we all band together and keep sharing our stories eventually we will bust through the ignorant paradigms! I’d love to learn about other people’s experiences with this dangerous, negligent practice so please comment below or email me at DawnMeeks80@gmail.com to speak privately. Please subscribe here to get updates to this blog delivered straight to your inbox!

Stay strong my friends <3

pexels-photo-89820-woman-sitting-on-a-grassy-knoll-looking-out-over-a-water-landscape
[Image Description pexels.com photograph of a person with long hair sitting on a grass area overlooking a landscape of water. The sun is shining brightly on the right of the photo. The person is wearing a cream-colored oversized sweater and has longer dark straight hair blowing in the wind. The person’s back is to the camera angle. In black tet overlay is the (affiliate link to book; see disclosures for more info) Susan Pease Banitt Quote, “PTSD is a whole-body tragedy, an integral human event of enormous proportions with massive repercussions.” At the bottom of the photo in a cream-colored text box in black font is: Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome www.onlyinthishead.com]

Chronic Life with EDS Update: Accessible Housing, A Gillion Medical Tests and More

It’s a little quiet here at Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome but for good reasons.

Over the past few months with the holidays (and recovery from my seasonal depression), the house-search, and all my medical appointments my spoons are lacking a great deal. So goes chronic life. I am dealing. Still, it makes me sad I can never really say I feel good anymore because I often feel significantly awful on more days than not.

I keep my thoughts light and my interactions brief because I just don’t have the energy for anything more. I forget how to communicate with healthy people since it is now it is a infrequent role to play. I also struggle to reach out (or reach back) because I just don’t know what to say. I do know not everybody enjoys my passion for genetic disorders, my belief in gluten-free, non-GMO organic, mostly vegan diet nor my theories on time, space or the in between. I never want to bore people but sometimes I can’t see through my passions to the annoying behavior I take on when I discuss these things with friends or family members. No one ever really understands my special interests and I don’t expect them to. I just want others to know I wish I could be more normal but all my defenses are stripped and “being normal” isn’t really within my abilities at this time.

Chronic Illness Cat: Misses socialization avoids visitors, calls, msgs & notifications because anxiety.
Chronic Illness Cat: Misses socialization avoids visitors, calls, msgs & notifications because anxiety.

Anyhow, I wanted to take a moment to write candidly about my latest chronic illness journey news and share our experiences finding our family a home with disability access and proper accommodations for our blended family structure.

Finding a home proved itself as no easy task with all things considered. After countless months of intensive searching, letdowns, and learning about the VA mortgage process I think we’ve finally found something to meet all of our needs and requirements. When I last wrote about our search we were bidding on a completely different home. In a fortunate course of events, we found out the home was appraised for much less than the sellers were asking and the realtor was pulling some shifty tricks. We were able to revoke the contract due to the home’s appraised being significantly less. Fortunately, the Veteran’s association is looking out for possible issues unsafe for the veteran with this check and balance in the whole process of VA loans.

Finally, we found a reasonable deal! If all goes according to plan we will close on on the house mid-February.

The house is “the one” for many reasons.

We needed a home big enough to accommodate our large family, allowing everyone privacy and sufficient living space on one level with wheelchair access considered throughout the home. Finding a one-level home with at least 5 bedrooms, 3 baths, and 2 living areas, a fenced yard with a small amount of property for a garden took months of intensive searching.

I found a realtor who listened to our requests to facilitate the best possible deal for us. So far, it’s a wonderful experience with the new realtor with her handling all the arrangements for us to see houses across many miles throughout the Buckeye state. The house we found is far from her service area but through synchronicities, it all worked out! Thanks, Universe!

Interestingly enough, the homeowners remodeled the house for accessibility because two of their children living there at one time required wheelchairs. It was also modified to have an “additional living suite” with a second kitchen and laundry. Perfect for us! My MIL moved in with is in in the Fall of 2015. Although we get along good for our tight quarters, we all want to have the luxury of our own living space so we are not tripping (or rolling) over one another. My ma-in-law is our Veteran and because one of the owners is also a Veteran she will be connected with some great resources in the community to enrich her life. Also, the realtor that showed the property is a veteran and refused to take payment from our realtor (also a Veteran) because she believes in things that are “meant to be.”

After we went into contract, the house was inspected and there were several big issues of concern found. At first, our hearts burst because it seemed the deal was going to flop.

Since the sellers went above and beyond to repair all items noted in the inspection report, payed the first year of our home warranty, and $1000 in escrow for cosmetic repairs, everything is still a go. We just got the word the VA appraiser’s report is good and no repairs are indicated. It is just a matter of time now.

We are fervently ready for this next chapter of life. I am already researching the area, the people in the area and the medical resources available in my usual intensive nature. My ma-in-law and kids are planning gardens and decorating. Hubs is investigating the local music scene and is just happy everyone is happy.

In earnest disclosure, I’m a slightly frightened about all the work to do before we move. I can barely clean my room, using my wheelchair, without my heart rate skyrocketing and my oxygen plummeting let alone pack a house. I employ a visualization technique to deal with things like this or when I get overly anxious with the threat meltdown mode looming. It helps, not 100% but enough to keep at it as much as I can.

I imagine every little intrusive, worrisome and/or frightening thought is stored inside grand ammount of  helium balloons with a string tied to each one.

[Image Description: Pexels.com photography edited with website title and blog post tile in a text box. The  picture is a perspective view of pink and red balloons against a blue sky with wispy fluffs of clouds]
[Image Description: Pexels.com photography edited with website title and blog post tile in a text box. The picture is a perspective view of pink and red balloons against a blue sky with wispy fluffs of clouds]
Whenever things feel overwhelming, I imagine taking all my worry balloons into my hand by the strings then using the biggest pair of scissors I can imagine to cut the strings in one strong chop. I visualize the balloons flying off into the sky, eventually, out of site while I breathe deeply. Sooner than later I find myself grounded in reality once again and able to continue fighting the good fight. This technique is always my go-to method for dealing with the torrid of thoughts, memories, and emotions around every corner of my existence.

Chronic illness life with Ehlers-Danlos Syndrome, POTS, and all these other diagnoses ensures at any given time my system will fire off inappropriate amounts of adrenaline in response to things not normally requiring such a flustered response. Even when I am positively excited, I am too excited and I will tremble and talk rapidly on the topic until I collapse in on myself in an exhausted, existential heap. I must giggle a bit when I think of myself this way because it reminds me of those early century photos of fragile, pale, ladies prone to fainting.

fainting-woman
[Image Description: Old century age photograph of a woman in a fancy period light-colored dress is laid out on a couch appearing to have fainted. A woman dressed in period attire stands above her holding a bottle of smelling salts to the fainted woman’s face] Image credit www.todayifound.com
Yes, indeed, chronic illness life is a struggle even with all my best efforts. Where I used to carry the burden of keeping the house clean, organized and stocked, my loving hubs and kiddos take the brunt of those jobs. Suddenly, I am a sage, providing tons of advice but not so much action towards physically completely our goals. I am a boss at anything requiring research though and my family never fails to let me know this contribution is wholly appreciated.

The chronic illness appointments are coming out the wazoo lately. The primary focuses right now are my digestive and nutritional issues although through using these supplements alongside my medications I am back up to a decent weight of 120 pounds!

Still, all the testing only leads to more testing and I often wonder if they will ever figure it out completely. At my last GI appointment, my doctor said I need to start thinking about a getting a tube feed placed to account for the calorie intake I can never seem to succeed without consequence.  I am considering it. I am so exhausted ALL the time.

Since going off the TMedPharma Protocol my migraines are worse as are my night sweats, pain, depression, and anxiety. In fact, it is my anxiety stopping me from emailing the company to get the protocol started again at an affordable price. Luckily for me, I connected with Immunize-labs and will be soon demoing a comparable product. From my lengthy experience with nutritional issues, I know many of my worsening issues are directly related to my low caloric and nutrient intake over all. For now, I am going to wait until after our move to address the possibility of a tube feed.

This month’s testing included a vascular ultrasound to determine the presence of Superior Mesenteric Artery Stenosis and/or Celiac Artery Stenosis. Interestingly, while the incidence is not well-documented, a simple google search for these conditions along with the Ehlers-Danlos Syndrome query produces many real-life stories of both vascular problems of the gastrointestinal system correlating with EDS diagnosis.

What’s even more interesting is recently a study proclaimed the mesentery of the GI system is in and of itself an actual organ with its function lacking a clear outline but it is a definite structure. The mesentery is one continuous organ throughout the GI system containing vascularized vessels, connective tissue, and important immune system components, all of which are crucial to GI function. Further studies plan to illuminate the function but this may be the missing link between stomach pain, nausea, motility problems and elimination problems when routine gastrointestinal testing comes back inconclusive for pathology.

Life synchronizations always work out for me in the way of chance meetings. The tech doing the ultrasound disclosed to me she had the same problem my doctor was looking for in me and the vascular surgeons at the hospital helped her. Once I was able to see her, I could see she was a classic picture of Vascular Ehlers-Danlos Syndrome. I told her to look it up and gave the name of my geneticist. She seemed interested and not weirded out by my instance. Still, the results for my test were negative and we are still left with questions as to why my GI issues are so bad.

Last week, I went for an Endoscopy with a therapeutic stretch to my esophagus and biopsy my tissues for pathology. The issues with swallowing and choking on my foods, pills, and drink is getting old and distressing. I continue to have pain with meals and at random, early satiety, seemingly erratically delayed motility and continuous nausea, cramping, bloating and other elimination issues but they’ve yet to determine why. This was my 5th billionth endoscopy so I wasn’t nervous for the procedure, only nervous it will be for nothing and leave us with even fewer answers as to why I am so affected. All I know is I cannot remember a time when my gut did not trouble me. It’s a maddening cycle for the Ehlers-Danlos Syndrome patients with gastrointestinal consequence.

At any given moment, often without trigger factors, my GI pain and distress will render me helpless until it passes. During the worst of those times, I stuck with a clear liquid diet for a few days and things would usually calm down within a week or so. Things are different now because my GI distresses are numerous and multiple times daily. It takes me around 5 hours after waking to work up the gumption to eat only a small amount of food. So for the past month, I can’t seem to eat more than 1 or 2 times a day equaling up to no more 700 calories, if I’m pushing it.

In other news, I had a DEXA scan which came back “normal” with the recommendation to repeat in one to two years or sooner if I start losing a lot of weight again. I was honestly surprised by this result as most of the women in my family had a significant bone loss from an early age. Hmm, maybe all those years of exercise and Yoga did do some good after all!

Still, my musculoskeletal pain, neuropathic pain, and physical limitations because of said pain take a great deal of quality away from my life and we still have no definitive answers as to the cause of all this beyond the general explanation of Ehlers-Danlos Syndrome. I am scheduled to see a rheumatologist in May and hope this will help to better categorize my difficulties under the appropriate diagnostic codes so that my insurance will pay for disease management interventions.

I suspect Sjogren’s Syndrome, Polymyalgia Rheumatica, Fibromyalgia, and/or ANA Negative Lupus. I am also questioning the possibility of late diagnosis cystic fibrosis or some variant thereof due to my history of lung collapse, activity intolerance, frequent decreased oxygen levels and inability to absorb fat on my own. Look forward to an update when I finally make it to a Rheumy after the recommendation was purposed by my cardiologist in 2014 after I went into acute kidney failure for no good reason.

Ah, the Spoonie life…. Not so glamorous at all!

The week before last, I went through another round of urodynamics testing to quantify recent finding of urinary retention and to see if I need to start catheterizing myself. These studies were just done by my former urologist less than a year ago but with my new urologist finding my bladder is starting to prolapse and my continued struggles with painful urination, leaking and difficulty starting my stream, the doc thought it wise to see how my results compared.

Last year, I barely got 100 milliliters of fluid in my bladder before I felt the urge to go. This time I was just under 1000 ccs of fluid before I felt the need to go but it took 15 minutes for me to convince my bladder to get with the program. The doctor did a urocystoscopy and said the lining of my bladder looked “ok.” He discontinued my Ditropan to see if that helped with the retention and said to come back in two months to see where I stood with everything.

Well, all it took was a few days off the Ditropan to aggravate my POTS into scary territory. Before starting the Ditropan almost a year ago, I was going 3000 mililiters daily. It was exhausting! Every time I drank fluids I needed to pee urgently within a few minutes, every time. By the evening of the first day without Ditropan, I started to feel and look dehydrated and barely sitting up in bed my heart rate climbed to 135 BPM while my oxygen made its random drops making my whole body tingle with confusion. Scary! On the second day without the Ditropan, it got even worse with getting a horrible sense of doom coming over me. I checked my heart rate to find it resting at 40 BPM. Normally, you would call an ambulance for these kinds of symptoms but instead, I took my Ditropan and waited it out. By evening I was back to my baseline, which is being able to sit up and transfer without getting severely winded. Needless to say, I will be emailing the urologist to discuss this issue and continuing my Ditropan.

Another important development over the first few weeks of 2017 was finally getting an appointment with Neuropsychology for my cognitive and sensory issues worsening over the last few years. You can read more about that here but in short, I will be getting testing for a lifetime of issues possibly related to an underlying diagnosis of Asperger’s disorder, now included as a part of Autism Spectrum Disorders as defined by the latest Diagnostic Syndrome Manual of Psychiatry. In addition to investigating this avenue, testing is prudent considering the decline and increased struggles with memory and cognition. Another piece of the huge puzzle of my Chronic Illness Life with Ehlers-Danlos Syndrome to put in perspective with consideration to my care.

I am super pumped to get the move over with and begin transitioning my care over to a new area with, hopefully, a better understanding of my case. I’ve noted more initiatives to raise Ehlers-Danlos Syndrome awareness in the state we are moving to and I see active groups in the areas so I’m assured there will be support available. Going into my second year as a diagnosed official Medical Zebra is less than glamorous. I would give anything to have an ounce of the old me back from the debility of this disease but instead of dwelling in my grief, I am raising awareness and arting up my feels when I have spoons to spare.

There are many more things I would like to elucidate on in this multi-faceted update, particularly on all the current events going on in the world. That is something I will save for my Stomach-vs-Heart: The Art of Survival Blog/Website where I share my art, creative writings and other musings from a neurodivergent mind. Creativity helps me cope with the decline I’ve experienced in the last two years and helps to soften the blow of the losses so I’d love to share my work with those interested. Be forewarned, there are and will be sensitive topics discussed and represented. I am an all-encompassing weirdo, in case it was unclear 😉

I hope to update more routinely again after the move and now so many tests and appointments are out of the way. The winter 2016-2017 took a beating on me in a lot of ways but I am still here and excited to keep moving forward. I am excited to review some incredible chronic illness products in the coming months so be sure to subscribe here for updates to this blog. I noticed quite a few new followers here as of late and I just want to say thanks so much for letting me capture your attention to my humble chronic illness journey! I hope to continue to curate quality chronic illness life with Ehlers-Danlos Syndrome related content for years to come!

May your silverware drawer be overflowing with spoons exactly when you need extra!

Love, Me

 

Chronic Illness Life with Ehlers-Danlos Syndrome: Neuropsychology Take One

The neuropsychologist looked at me with all the typical body language indicating sympathy and said (paraphrased):

“Everyone one has a plate in life.
Your plate is overflowing.
As your plate’s contents grew,
some things fell off.
We will look at those things.”

It took me roughly 24 hours to process what exactly this meant. I tried to figure out the technicals around all the angles but only after around 16 hours of intermittent sleep could I clearly see this means I may finally get validation for a life of neurodivergence.

Neurodivergence is a newish concept I’m researching for better understanding and implementation into my theory of life. Per Wikipedia:

Neurodiversity advocates promote support systems (such as inclusion-focused services, accommodations, communication and assistive technologies, occupational training, and independent living support)that allow those who are neurodivergent to live their lives as they are, rather than being coerced or forced to adopt uncritically accepted ideas of normality, or to conform to a clinical ideal.

The term Neurodivergence describes those of us who do not think like the majority aka neurotypicals. Initially, I was shocked everyone doesn’t think like me. I realize we all have individual thought process influenced by the grand variety of factors life offers but it never occurred to me the reason I felt so outlander like was because my perception of reality is far different from the neurotypical version.

As I leaned more on the online disability community for support with my new diagnosis of Ehlers-Danlos Syndrome and POTS, I saw myself in countless reblogs, tweets, and status updates from the Neurodivergent community.

https://stomach-vs-heart.tumblr.com/post/150977492666/friend-ugh-i-have-a-song-stuck-in-my-head-me

I saw myself in a new, more holistic perspective free from the shroud of mystery and internal debate theming my existence.  It’s taken thirty-six years to unravel this mystery. I am thankful to unite with my answers through the EDS and other medical diagnosis but this last piece of the puzzle is equally important to improving the quality of my chronic illness life.

776px-autism_spectrum_infinity_awareness_symbol-svg
Rainbow Infinity Symbol for the Neurodiversity Movement
I got a comfortable vibe from the doc and within a few minutes of conversing I felt my mask slip away and everything underneath, the real me, began to ooze out from underneath.

But it was okay.

https://stomach-vs-heart.tumblr.com/post/147251981999/bitterautistic-autism-is-different-for-every

For once, I didn’t mind letting go of the disguise and I let each of my statements hang out with all authenticity and weirdness without fear of judgment. After all these years of avoiding this avenue of my care, I knew it was in my best interest to force my authenticity forward. This is a rare occurrence for me at doctor’s appointments. Even with my psychologist providing Cognitive Behavioral Therapy, I find myself guarded. It is a weird ego thing I only recently became aware of but now I see how my experience as a registered nurse creates a situation in which I have trouble putting away my nursing persona so my practitioners can’t see me, the patient. My nursing persona is how I managed the mildly successful, eight short years in the career field without [completely] blowing my cover.

When I twenty-something gamer I loved playing the PlayStation game called Persona.

Source Wikipedia https://en.wikipedia.org/wiki/Persona_(series)
“Advertising artwork for Persona 3 showing the main protagonist, two of the main cast, and a Persona. It was created by Shigenori Soejima, whose work has become strongly linked with the Persona series.” Source: https://en.wikipedia.org/wiki/Persona_(series)

It was an RPG, classic-style game in which a high-school and town is taken over by evil forces and these fashionable students band together to banish the evil from whence it came.

The students morphed into different personas, some being much greater and more fantastic than their regular selves. These alter egos allowed for super cool battle attacks or mass healings during fights plus the looked amazing. It was one of my favorite games, probably because it represented how I am not quite myself around others because over the years I’ve adapted to my stress with socialization by creating the personalities to fit the situation. It’s like being an actor except way less cool and glamorous. It is an exhaustive feat and only now do I realize how damaging it is to hide myself wherever I go for fear of people who don’t understand.

Preoccupied about minding my non-verbals and responding appropriately, every social interaction becomes a performance I must overcome.

Any time I need to be someone or something other than the who and the what I am, an appropriate persona takes over automatically based on my study of the role, fictional characters in books or videos in similar situations and close inspection of the other’s behaviors and reactions so as to modeled my behavior accordingly and hopefully avoid social ruin. This worked most of the time but there were times when I was physically sick and everything interpersonally spiraled out of control. I am not disingenuous, only lacking in an understanding of what normal is, exactly.

Finally, I came to terms with a life of disassociation during 2015 and 2016.

Unfortunately, my body now recognizes every social instance as a potential fight or flight situation. For me, social nuances, boundaries, and analysis of situations realistically is my greatest challenge. I get lost in the interpretation of all the unsaid rules innate to most but not for me.

This article contains a couple Amazon affiliate links for books recommended. Using these links to purchase on Amazon earn me a small commission.
Please see the Disclosures Page for more details. 
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Enter a caption

Over the years, I cultivated a mask for almost every situation. I forgot who the real me was hiding beneath all the masks piled atop to deal with the world. Only after my total disability in 2015 did I discover what the masks were all about. In my own case, as I delved into understanding every facet of EDS, the possibility of Autism Spectrum Disorder became exceedingly clear. All my life, that thing separating me from them, finds appropriate validation with an ASD diagnosis. It makes the things my longstanding depression, anxiety, and PTSD never explained make perfect sense!

Click to Purchase Everyday Aspergers by Samantha raft on Amazon. Kindle and Paperback versions are available.
Clik to Purchase The Misunderstood by Rose Whitson-Guedesbon Amazon. Available FOR FREE for Kindle Unlimited!

I read Everyday Asperger’s by Samantha Craft and Rose Whitson-Guedes account The Misunderstood: A Theoretical Profile of the Hidden Savant. It was like my diary was a stream of consciousness to inspire the authors. Each new autobiographical book from Autistic Writers struck a chord deep in my awkward soul and I finally felt I found the “missing piece.” For many years, the pages of my numerous diaries spoke to my constant sense of not belonging. I felt like a loner and a nomad from day one.

Armed with a better understanding, all the things I learned to bury deep beneath the surface for fear of judgment and ostracizing are now laid at for all to see, even myself. I don’t feel embarrassed by these discoveries, only validated for all the confusing moments of my life. As my neuropsychologist asked me questions and I responded in my usual tangential way, I could see my symptom checklists virtually added up as silently equated estimations of my chief difficulties.

Soon after the questions started, he pulled out an ASD criteria sheet to go over with me regarding my symptoms.

Hubs was there and gave valuable input especially when I got lost in my own details, unable to explain my point or find my way back to answering the question. The Neuropsychologist appreciated the additional input. By the end of the session, the doctor said he doesn’t think there will be any problem getting my insurance to approve my testing. To paraphrase the unofficial ruling was probably Aspergers if it were still a diagnosis but not severe autism… even if it is severe autism you are probably high-functioning on the spectrum still. 

Now we wait for a testing date.

A neuropsychological evaluation on my symptoms needed to come several years ago when the neurological portion began getting worse but for some reason, I never seemed capable of coordinating my care enough to get this important assessment until Fall 2017. After all the struggles, all it took was a call to a Neuropsychological Group that accepted my insurance and I got an evaluation appointment scheduled about three months later.

This is a big event for me. I want to illuminate my ASD diagnosis to make it easier for my daughters and son to also get an evaluation. All my kids are obviously on the spectrum. My daughters are adults now but motivated to get diagnosed soon after we move because of vocational and social issues but my son is still young and I am unable to get his dad to agree to the evaluation. He holds to the mentality “There’s nothing wrong with my boy!” It a frustrating, useless, and damaging stance to take while my son is expressing difficulties in school as illustrated by his grades. He would do so much better with an individualized education plan in place. 

My other expectation for getting the testing done is so my medical doctors will better understand my experience with physical pain and distressing symptoms. All my life, I’ve met with quizzical looks when describing my physical sensations. I remember when I became aware of this fact during my second pregnancy. I called my midwife almost daily with all my symptom reports. Things like”it feels like someone is jamming a knife in my cervix” to “It feels like my intestines are swelling up” and so on makes it easy to see my sensory experience of pain is different than others. During my second major hospitalization my GI doc told me I suffer from “hyperalgesia” in which I feel visceral pains where “normal” people do not.

With getting an established diagnosis, my doctors *should* understand why my experience with physical ailments is intensely unique. Maybe they will know when I make a complaint, it usually is accurate in description to the investigated problem and I am not being dramatic, only communicating the authenticity of the experience. My other hope is in establishing a baseline for these cognitive losses more recently incurred, if things decline further there will be data to compare when we cross that bridge.

To better illustrate my case, I prepared a portable USB drive with all pertinent information including childhood pictures, writing samples and all my medical and psychiatric history.

(Click a picture to open the slideshow!)

The doctor expressed gratitude for my preparation saying it was helpful I was so organized. My thoughts played loudly in my head: If only you knew… In former years, my preparation for this type of an appointment would’ve been pristinely organized with more than enough, if not too much information, along with obtaining copies of all my recent tests and providing a portfolio of all my medical history. Even so, being somewhat prepared was more helpful than not for presenting a clear picture of my case.

What I find most interesting in researching the incidence of ASD with EDS, I’m hard pressed to find anEDSers without ASD features. Conversely, I’ve yet to find someone with ASD who doesn’t fit the EDS picture.  Part of my mission here at Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome is adding my experience to the growing body of evidence correlating EDS and ASD as cohort diagnoses.

[Click to open search results for Ehlers-Danlos Syndrome and Autism indexed by Google over the last year]

Illuminating this connection in my own case explains much of my life with an undeniable validity. I share my journey in hopes of shedding light on the topic from a real life perspective for others facing similar circumstances. While #SelfDiagnosisisValid, getting my ASD diagnosis verified to bring clarity to not only my experience but other people’s experience of me and others like me feels like an important part of my journey. Thanks for taking the time to be a part of my neuropsychological path in my advocating for my best interest in healthcare! I’ll be updating as I get more information. Please subscribe here for updates to this unfolding story and other Chronic Illness Life with Ehlers-Danlos Syndrome related content!

 

ending quote on weight

The Twelve Days of Chronic Illness Christmas

Christmas time in my family centers around taking time away from life’s usual routines to spend time together, eat and exchange a few gifts. While my relationship with the holiday season is complicated, the one saving grace is getting a nice, relaxing day to enjoy the family without the usual hustle and bustle of the world pulling us in different directions.

Christmas reminds me of a time, too far gone away to touch but the whispers of nostalgic memories of the past serve to warm my soul every year when my holiday depression threatens to freeze me to death. As a child, many of my family’s holiday gatherings included performances. We did skits, songs, and stories with each family member contributing their talents to a night of fun and belly clutching laughter. These are some of my happiest memories.

As life goes, times changed. There aren’t as many get-togethers and key players are missing but the memories continue on reminding me of a time less inundated with the struggles of chronic illness life. In the happy memories of the Christmases past, I was inspired to write a parody of The Twelve Days of Christmas, chronic illness style!!!

What is our struggle worth if we cannot laugh together about it every now and again? Please enjoy my rendition of this holiday favorite and may you have a restorative holiday season filled with tons of extra spoons along the whole holly jolly way!

🥄🥄🥄🥄🥄🎄🎄🎄🎄🎄🥄🥄🥄🥄🥄🎄🎄🎄🎄🎄🥄🥄🥄🥄🥄🎄🎄🎄🎄🎄🥄🥄🥄🥄🥄

12-days-of-chronic-illness-christmas
The Twelve Days of Chronic Illness Christmas | Only in this Head: Chronic Illness Life with Elhers-Danlos Syndrome | www.OnlyinthisHead.com [Image Description: High-resolution image from pexels.com. White with light shadows in the background. In the upper right-hand corner is a couple branches of mistletoe on an evergreen. The blog title and wedsite name overlay the photograph.]

On the first day of Chronic Illness Christmas, my sickness brought to me:

A rare genetic illness off my family tree.

On the second day of Chronic Illness Christmas, my sickness brought to me:

Two Scopes for the price of one.

And a rare genetic illness off my family tree.

On the third day of Chronic Illness Christmas, my sickness brought to me:

Three out of town consults.

Two Scopes for the price of one

And a rare genetic illness off my family tree.

On the fourth day of Chronic Illness Christmas, my sickness brought to me:

Four Resturants without disability access

Three out of town consults.

Two Scopes for the price of one.

And a rare genetic illness off my family tree.

On the fifth day of chronic illness Christmas, my sickness brought to me:

Five Golden Spoons!

Four Resturants without disability access

Three out of town consults.

Two Scopes for the price of one

And a rare genetic illness off my family tree.

On the 6th day of Chronic Illness Christmas, my sickness brought to me:

Six doctors, a-doctoring

Five Golden Spoons!

Four Resturants without disability access

Three out of town consults.

Two Scopes for the price of one

And a rare genetic illness off my family tree.

On the seventh day of Chronic Illness Christmas, my sickness brought to me:

Seven symptom clusters, a-flaring!

Six doctors, a-doctoring

Five Golden Spoons!

Four Resturants without disability access

Three out of town consults.

Two Scopes for the price of one

And a rare genetic illness off my family tree.

On the eighth day of Chronic Illness Christmas, my sickness brought to me:

Eight strangers, a-recommending

Seven symptom clusters, a-flaring!

Six doctors, a-doctoring

Five Golden Spoons!

Four Resturants without disability access

Three out of town consults.

Two Scopes for the price of one

And a rare genetic illness off my family tree.

On the ninth day of Chronic Illness Christmas, my sickness brought to me:

Nine “friends,” a-disappearing

Eight strangers, a-recommending

Seven symptom clusters, a-flaring!

Six doctors, a-doctoring

Five Golden Spoons!

Four Resturants without disability access

Three out of town consults.

Two Scopes for the price of one

And a rare genetic illness off my family tree.

On the tenth day of Chronic Illness Christmas, my sickness brought to me:

Ten holiday invites I’m avoiding

Nine “friends,” a-disappearing

Eight strangers, a-recommending

Seven symptom clusters, a-flaring!

Six doctors, a-doctoring

Five Golden Spoons!

Four Resturants without disability access

Three out of town consults.

Two Scopes for the price of one

And a rare genetic illness off my family tree.

On the eleventh day of Chronic Illness Christmas, my sickness brought to me:

Eleven prescriptions, a-medicating

Ten holiday invites I’m avoiding

Nine “friends,” a-disappearing

Eight strangers, a-recommending

Seven symptom clusters, a-flaring!

Six doctors, a-doctoring

Five Golden Spoons!

Four Resturants without disability access

Three out of town consults.

Two Scopes for the price of one

And a rare genetic illness off my family tree.

On the twelfth day of Chronic Illness Christmas, my sickness brought to me:

Twelve hours of Netflix, a-streaming.

Eleven prescriptions, a-medicating

Ten holiday invites I’m avoiding

Nine “friends,” a-disappearing

Eight strangers, a-recommending

Seven symptom clusters, a-flaring!

Six doctors, a-doctoring

Five Golden Spoons!

Four Resturants without disability access

Three out of town consults.

Two Scopes for the price of one

And a rare genetic illness off my family tree.


Happy Holidays

from

Only in this Head:

Chronic Illness Life with Ehlers-Danlos Syndrome!

Are you new to Ehlers-Danlos Syndrome? Well, if you are then I am here to help.As I chronicle my journey through diagnosis and management of Vascular Ehlers-Danlos Syndrome, POTS and several associated cohort issues my hope is through telling my story other Zebras might find their way to diagnosis also. Remember, these posts are for informational purposes and are not intended to substitute medical advice, diagnosis or management.

Please subscribe here for updates to Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome and if you want to follow my art journey over at Stomach-vs-heart: The Art of Survivalclick here to subscribe. Click on the picture below to check out my chronic product review series! As always, many blessings and pure love❤

Click here to read more from Only in This Head's Chronic Product Review Series
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My Chronic Illness Life with Ehlers-Danlos Syndrome: A Personal Health and Life Update

The year twenty-sixteen is coming to a close and I cannot believe how much has changed since this time last year!

Chronic Illness Life with Ehlers-Danlos Syndrome peaks and troughs constantly, often without warning.  Since getting my official diagnosis, research on how to best manage my FINALLY named disease helps and I’m adjusting as more things are managed and monitored. Life is SUPER busy right now with lots of changes on the horizon so I wanted to take a moment to update before things get MEGA busy as the upcoming changes go into action.

My Chronic Illness Life with Ehlers-Danlos Syndrome: A Personal Health and Life Update | Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome | OnlyinthisHead.com
My Chronic Illness Life with Ehlers-Danlos Syndrome: A Personal Health and Life Update | Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome | OnlyinthisHead.com
“Life is a series of natural and spontaneous changes. Don’t resist them; that only creates sorrow. Let reality be reality. Let things flow naturally forward in whatever way they like.”
Lao Tzu

We are buying a house! Even though I still spend 99% of my free time sedentary, being the most internet savvy in the house led to many hours of searching real-estate listings over the last 6 months since we set our goal on becoming homeowners. I took on the task to the same obsessive degree I take on any project but it finally paid off and we should close on the house by the end of December!

See caption for image description of the new house.
[Image Description: Google maps photograph of our new house pending the usual closing business. The hose is a two story colonial home with beige siding with blue shutters and a red/brown roof. There is a two car garage attached to the home and the second story spans the length of the home plus the garage. The front porch is open but covered with white pillars supporting. Several large windows line the front of the house on both the first and second stories. The landscaping is simple with several well trimmed shrubs accenting the house. There is a cement sidewalk to the front door. There are trees peeking over from behind the garage.]
What made this such a difficult task is the size home we needed to accommodate our large family. Currently, we are living in a 3 bedroom house with 5 adults, 1 child, 3 kitty cats and 2 pups. While everyone has privacy, there is little space to spread out and live. The stress of the close quarters is compounded since February 2016 when I became a full-time wheelchair user. Getting around the house became challenging with narrow doorways and halls making maneuvering no easy task. In addition to this consideration, I needed to choose houses appropriate for my mother-in-law who is also disabled with multiple chronic illnesses.

We wanted something big enough to so my mother-in-law can have her own living space and so could we but we would all still be under the same roof. Since the initial event fueling my total disability, we’ve taken to communal living to share the weight of the rising cost of living. The first round was with friends in an effort to eventually move to the great state of Colorado. That didn’t work out. We ended up seeing these friends off and moving my ma-in-law in to share housing costs. Splitting the housing expenses made a big difference for all of us. It is a win/win situation we are taking to the next level by finding a house to suit all our needs to buy rather than rent. The new house will have three living rooms giving everyone a space besides their bedrooms to leisure and commune.

The only thing needed before we can move in is the installation of a wheelchair lift from the first to second floor.

Picture of a wheelchair stairlift. Credit NewsonAir.org
Picture of a wheelchair stairlift. Credit NewsonAir.org

Luckily, my mother-in-law is awarded home modifications as a part of her service in the military so the cost is covered as is the installation. The neighborhood is small and beautiful with a lake nearby. There is a wheelchair accessible walking path through the whole town. We will have a little less than an acre of land so the dogs will be able to enjoy a nice big backyard and the kids are already planning on putting in a garden. The new house is a little over an hour away from my family but not so far it will be very difficult to transverse the distance.

The most exciting thing about the move is I will be able to go to Cleveland Clinic and hopefully get better management for my case of Vascular Ehlers-Danlos, POTS, and some other concerning health issues popping up over these last few years.

While I recognize my treatment options are limited, the level of knowledge regarding these diagnoses is sadly lacking at WVU, save to say a few specialists who actually understand these rarely diagnosed problems. The severity of implications, along with the accepted protocol for monitoring Vascular Ehlers-Danlos Syndrome patients left neglected increases the risk for mortality. My hope is Cleveland Clinic will help better manage my POTS and investigate the possibility of a Chiari Malformation. Another strong point about our move to Ohio is a future of better pain management since cannabis is now legal for medical with initiatives to provide for the need in the works.

Still, before moving all my healthcare over the state line, there are several more medical procedures to complete due to some concerning findings on recent testing. The result I am most nervous about is the mass the found in my pancreas as well as the bulging of the duodenal bulb. At the beginning of the year, I was diagnosed with Exocrine Pancreatic Insufficiency for which I now take enzymes before every meal to aid in my digestion of fat since my pancreas is not producing the enzymes to digest fat on its own. At the time, no doctor was able to give me a viable explanation for this finding other than I needed more follow up.

This is terrifying because my grandmother died in her early fifties as a result of pancreatic cancer the doctors said started in her thirties.

There are days when an excruciating pain under my left rib cage buckles me into submission with my disease process. My baseline indigestion is getting worse. My issues with early satiety began years ago but there are days when it takes me eight hours to get a substantial enough appetite where I can tolerate an actual meal. Suddenly, I started with really bad hiccups that bane my existence at least once daily. I really hate to complain but when each day presents debilitating challenges in this area, worse with each passing year, it is beyond my ability to completely disconnect from the physical experience any longer.

All the years of damage compounded heavily against my nervous system caused my nerve endings to fry out like an overloaded motherboard. The effects extend from head to toe, with my flight or fight response being the most severely affected after my associated dysautonomic GI complications. The hyperalertness of my nervous system is exhausting me in light of this most recent scare. Fortunately, I have the best support system a Spoonie cold ask for as I travel this tale in life and I am managing quality despite the increase in these suspicious findings.

These are all things I remember from my grandma’s battle with cancer so many decades ago. The “Big C” runs thick in my family so each cancer scare from my health causes my anxiety to spike to painful levels while waiting on the results. Still, I wonder how many cancer scares one person can have before it’s actually cancer. I get a cancer scare every few years since beginning adulthood. To avoid the massive weight of my own mind, I focus on creating, my interests and anything to make myself believe this stuff is no big deal. Still, after getting my raw genetic data analysis and looking round at my risks it feels like it is only a matter of time before the game of hide and seek ends.

To distract myself from the over activity of my mind, painting and other forms of artistic expression are now my outlet and passion. I love painting because it slows down my thought processes and allows me to separate from the bridge of life as I step into a serene mindfulness state of mind. I have several pieces nearing completion and so many ideas to come as time and health allows. My hope is to stock an online gallery of my work over at Stomach-vs-Heart: The Art of Survival.  Art is my most favorite therapy for my mind and body when other tactics are no longer feasible.

#dna #eye #alchemical #pencil #digitalart #sketchart #picsart #myart

A post shared by dmfm (@dmfm437) on

Anna Quote on Creek Scene
I took this photograph on the very last nature walk I took. It was a beautiful day where I recentered with nature. I will always remember this day for the calm it provided. [Image Description: Original Photograph captured and edited by Dawn Marie Meeks. The photo is framed with a square forest green frame with inside rounded trim. The photo dipits a tree line along a creek with hills of trees rolling in th background and reflecting in the creek. The quote by Anna Akhmatova overlays the photo “I seem to myself as in a dream, an accidental guest in this dreadful body. In yellow-green font: OnlyinthisHead.com]
I used to take nature walks and drive to shake off stress but since getting out of bed became a three-hour ordeal and West Virginia is lacks in wheelchair accessible nature trails, my coping strategies began changing by necessity. Driving is out due to vision loss, sensory disturbances, limited range of motion in my neck along with numbness and tingling in my extremities. Of course there are many days I am too ill to even sit up in bed let alone venture out into the world.

My adapted coping techniques focus on activities to enrich my soul without exhausting my mind and body. Usually, I keep afloat the tides of chronic disease by employing art as a means to transmute my suffering into something greater.  The way art works, quieting my never ending neural dialogue stream and frazzled neurons, distracts my attention from the woes of chronic illness life in a way no medication, supplement or salve could ever achieve.

I soon start another round of modulated physical therapy for my neck pain. While I do well to keep up with my physical therapy exercises at home, the benefit of the more therapeutic component of physical therapy is something I’ve need for awhile. My neck and upper back, as well as lower back and hips, cause issues if not from swelling and dislocating, it is a burning nerve pain gnawing away at my energy and mood. An incidental finding on my cardiac MRI indicated I have a spinal hemangioma on my lumber spine. This may be the cause of many of my pain issues in my back as well as the sudden issues with urine retention which may result in my having to self-catheterize to prevent complications. I have a CT scan at the end of this month to see what else is going on in there from a focused perspective. This is long awaited as my back feels as though it is crumbling beneath me and these problems began plaguing me at as early as fourteen years old.

Just another reminder of my ancestors as I recollect tales of my grandmother needing several bladder surgeries as well as a first cousin on the same side. When I look at my genetic data obtained for free through a wonderful program called Genes for Good, I see why my former physician always said “Next time you decide to be born, choose better parents.” No offense to my parents or any of my family but our genetics are a big bucket of mutated function and high susceptibility to disease. I think of my life traumas in relation to my shoddy genetics and no wonder my life’s challenging. All branches of my family tree harbor the decay of illness and the rot of cancer and this makes sense against the instability of health.

Last week my uncle died after a battle with cancer he won but later developed complications of some other processes ongoing in his body. I imagine some of these processes are EDS related. It makes me shudder to think of all the pain he went through, unrequited over the years. He was in his late fifties, struggled with severe back pain due to degeneration the last few decades of his life and his cancer started likely ten year before diagnosis. He struggled with quite a few health problems. He was an impeccable nurse and talented singer who I could talk to about anything and everything.

My uncle was the first of my mother’s siblings to pass away and the only immediate family member death on my mom’s side since my grandfather died in the early 2000s. I see the pain all over my mother as she re-experiences all her most painful losses through his passing along with the new wound of losing him all too soon. I behold with adoration as my mom morphs into the matriarch of my family during this trying time. She holds together the kinship just like my grandmother did when she was still living. Watching her bloom into her greatest version with titanium-like strength in the most difficult of times is an honored experience driving me forward as I hurdle my own challenges in life.

As the year winds down all these aforementioned parts of life are making 2016 a year I am glad to say goodbye to. As we prepare for the move soon after the first of the year, I am struggling not to blow my top not being able to do much to pack. I have faith in my hubs ability to get it all done but my extreme need for order and routine to moving is trying to warn me otherwise. Everyone is excited to move on with life from this town and its memories. Blogging may take a backseat as these transitions rise but my hope is to write a little about my experiences every day, whether I publish it or not. Who knows? Maybe I’ll end up publishing more content than I would otherwise in the long run!

[Image Description: Still shot of Alice from Disney’s Alice in Wonderland as she falls down the rabbit hole waving goodbye to her kitty Dyna (not pictured)]
In closing, I recall my former self, this time last year. Walking was just beginning to become impossible without aggravating my POTS to the point of passing out. Every ounce of energy I put out beyond basic functions negated two more as a penalty in this vicious process. While I considered things were going downhill, I never thought it would happen so fast. What is it all for? The question is ever present in my mind, trying to understand all these challenges involved with chronic disease and progressive disability. I feel much like Alice tumbling down the rabbit hole, unsure of where I am going and fearful I may never find the way out.

Even so, life is good. Despite the depravity of illness and untreated symptoms there are many things to smile about. I have a loving family who care for me greatly, both existentially and literally. We are moving into a beautiful home, big enough to house our love for each other. My health is a constantly changing form but now with diagnosis I feel better prepared for the path to come. As the year winds down and the countdown to the New Year begins I am happy with all the choices leading me to this place in life I call home.


Thanks so much for joining me as I recount my journey in Chronic Illness Life with Ehlers-Danlos Syndrome. Talking about the real life experiences medical zebras go through is the number one way to raise awareness about this rarely diagnosed condition but also is a great way to connect with the countless EDSers online working to shed light on this challenging, individual specific disease process widely neglected by medical communities around the world.

New to EDS? Don’t worry! I have you covered with the links below!

Please subscribe here for updates to Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome and if you want to follow my art journey over at Stomach-vs-heart: The Art of Survival click here to subscribe. Click on the picture below to check out my chronic product review series! As always, many blessings and pure love <3

Click here to read more from Only in This Head's Chronic Product Review Series
Product to Improve the Quality of Chronic Illness Life | Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome | Chronic Product Review Series | [Image Description: High res image of a female sleeping on a couch in front of a large window. The Blog Title and Series Title overlay the Photo]

Chronic Pain Toolkit: 6 Tools to Improve the Quality of That Chronically Painful Life

I am one of the  cursed ones, doomed to live life with chronic, progressive musculoskeletal pain. Whether it’s my muscles, joints, bones, ligaments or tendons acting up, my diagnosis of Ehlers-Danlos Syndrome plays out painful effects throughout any one or all of these system components.

Finding a pain management strategy to improve my quality of life is an Art of Survival. Sharing what I learned through research, trial, and error is the mission of this humble website, so without further ado here is my  Chronic Pain Toolkit: 5 Tools to Improve the Quality of That Chronically Painful Life™


This post contains affiliate links which I may receive a commission if these links are utilized. This is a great way to support my work at no extra cost beyond the purchase. No forms of compensation were provided by the companies for these product links and all opinions belong to the author of Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrom. Please see the Disclosures page for more detailed information.


#1 Hot and Cold Therapy

My muscles strain and sprain for no rational reason more often than not. My doctor prescribes an opioid and muscle relaxer to help, which is great except for the increased side effects and leftover pain unrelieved by prescriptions. Adding Hot/Cold therapies to my pain management toolkit helps where the scripts leave off.

I purchased this Sunbeam heating pad from Amazon a few months back to replace the one I lost. The original heating pad made it 5 years without malfunctioning, so I was confident in the brand and purchase.

Sunbeam 756-500 Heating Pad with UltraHeatTechnology

One of my favorite things about this heating pad is the length and width. Laid out flat, it covers my entire back or I can wrap it around my belly when my gut is acting funky. My intermittent subluxations, dislocations, and frequent strains/sprains make this a must have on hand item for those bad days. Heat helps promote circulation, which is often impaired with injury and inflammation occurring with EDS as well as other chronic pain conditions.

Cold packs reduce harmful inflammation by slowing circulation. With musculoskeletal injuries, circulation may too quickly deliver important immunity components to the area of injury to hasten the repair process. An overzealous effort floods the area with interstitial fluids beyond the tissues capacity. The resulting damage caused by  pressure to delicate structures and nerves in and around the area, thereby making the original injury even worse. Applying a cold pack immediately after an injury helps to reduce damaging inflammation.

TheraPearl Sports Pack, Reusable Hot Cold Therapy Pack

I use these hot/cold packs by Therapearl are great because they don’t stiffen in the freezer so I can easily use it on any area without causes pain from a hard, awkward, frozen block. Using anything frozen on my body activates my cold intolerance quickly. This pack is made with a gentle, velvet fabric to keep the direct coldness off the skin. Plus, these packs are just the right size to spot treat sore areas on my back. As far as the “hot” usage goes, the heat dissipates too quickly to be effective. One even popped while heating in the microwave. I can’t recommend these for hot therapy. Nevertheless, I can’t say enough about these handy cold pack for combating my musculoskeletal pains.

#2 Muscle Salves, Lotions, and Balms

Topical pain relievers are integral to treating my chronic musculoskeletal pain. There are a wide variety of topicals available through Amazon. I’ve tried quite a few different products available as well as from other online suppliers.

Recently here on OnlyinthisHead: Chronic Illness Life with Ehlers-Danlos Syndrome I got the opportunity to review a  couple CBD-infused products for relief of my musculoskeletal pain with fantastic results. Please see the links below to open a new window to read the reviews.

I was SUPER impressed with the power of CBD lotions for my chronic pain. Right now, The Fay Farm’s Rejuvenation Lotion is my favorite pain relieving lotion, but I also am quite fond of Noxicare, an all natural pain relieving cream formulated by physicians specifically for musculoskeletal pain.

Noxicare™ Natural Pain Relief Cream | Physician Formulated for joint, nerve and musculoskeletal pain

Both these products contain powerful ingredients, known to reduce inflammation, swelling and related pain without harmful side effects. Unfortunately, my chronic illness story includes a load of hypersensitivities to certain foods, additives, and chemicals. Neither of these products aggravated those issues. Anytime I begin feeling strain or swelling in my muscles and joints, applying topicals reduces my pain within 10-15 minutes. With continued and daily use, the reduced muscle tension works to improve my other symptoms. Even if this intervention only provides a fraction of relief, it is relief that cannot be achieved in any other way.

#3 Relaxation Techniques

Any practitioner equating my pain only with stress automatically loses my respect if they know my history. It feels invalidating as if being told, “You are only in pain because you fear pain.” 

Why can’t they understand it is the pain stressing me out not the other way around?! Regardless, relaxation during pain flares  is important for the best outcomes. With the right tools in my Chronic Pain Toolkit, it isn’t an insurmountable endeavor and helps considerably.

“To have faith is to trust yourself to the water. When you swim you don’t grab hold of the water, because if you do you will sink and drown. Instead, you relax, and float.” ~ Alan Watts

The relaxing intervention I use to help lull my pain into submission includes indulging my olfactory senses with essential oils. The sense of pain is much like the sense of hearing, taste smelling, sight, and feeling. It sets off processes in the body to prepare for incoming stimuli, whether it being pulling away from a painful stimulus or initiating secretion of digestive juices after smelling an appetizing meal, our olfactory senses are always sending messages about the environment to our brains so the body can be ready. At the same time, when one sense is negatively overwhelmed, adding stimulus to other senses will help divert energy from the offending sensation to respond to new incoming stimuli. This is how aromatherapy works to help reduce pain by inducing relaxation.

Bulgarian Lavender Essential Oil for relaxation during pain flare

Essential Lavender Oil is exceptionally helpful when  experiencing a pain flare. Rubbing a few drops into my hands, cupping my hands over my nose taking deep inhales and exhales transcends my soul beyond the pain of the flare.  While I do not believe essential oils cure chronic illness, I believe there are therapeutic effects available to augment more conventional therapies.

Sound provides countless therapeutic effects, especially within the realms of relieving chronic pain via the use harmonic and resonant tones. Known  for healing properties. my Tibetan Singing Bowl helps me focus my mind and calm the racing though often accompanying pain flares.

Tibetan Singing Bowl Set by Geshe’s Dharma, Daily Meditation for Healing Relaxation Therapy

When I use this beautifully hand-crafted work of art by Geshe’s Dharma, those nagging realities dissipate into the abyss so I can focus on allowing the pain to pass without overtaking me. The tones this calm my mind, creating a slight vibration on my forehead between my eyes. I imagine ancient magic aiding my pain plight.

Through this relaxation technique, I enter a meditative state where pain transcendence is possible, even if only a placebo effect. This bowl makes a great conversation piece as well! Of course, this is helpful in dealing with my anxiety/panic attacks also. Amazon offers numerous varieties in Tibetan Singing Bowls and the prices are affordable. The tone is beautiful as you can see here in this short video demonstration:

 

Dr. Teal’s Epsom Salt Soaking Solution Bundle | 1 Relax & Relief Eucalyptus Spearmint and 1 Soothe & Sleep Lavender (3lbs)

My toolkit wouldn’t be complete without luxurious and pain relieving Epsom’s Salts. My soaks in the tub with lightly scented Epsom’s salts help on days where nothing relieves the stiffness, swelling and pain. Soaking in an Epsom’s salts bath for a twenty minutes or more helps tremendously to loosen things up so my other tools will work better. I tried several different brands, but am partial to any of Dr. Teal’s Epsom Salts.  My favorite is The Soothe and Sleep Lavender for I’m a little addicted to the Lavender scent.

 

#4 Compression Therapy

My hands cause a significant amount of arthritic pain. Eighteen years after the first utterance of arthritis, it is now widespread throughout my body throughout my whole body.  Sadly, my hands look like a 105 years old.

One management strategy proving helpful is compression therapy. This works by confusing pain signals via  pressure application. It also promotes circulation via the gentle vacillation the compression simulating the pumping action of the skeletal muscles.

The Vive Health Products on Amazon offer great deals on quality medical equipment. I looked hours for at compression gloves to find one well reviewed.  After foraging the compression gloves section of Amazon checking options and customer reviews, I felt confident spending $15 USD on this product. This glove met my needs and looked great no matter what I wear (usually PJs!).

The Vive Arthritis Compression Gloves are quality crafted. Fashionably, the material’s stylish gray/black pattern fusion is neutral and exceedingly versatile. I feel evocative of the C-punk movement wearing these gloves! That makes me a

Click Here Great Deals on Vive Compression Gloves on Amazon!

awesome despite my pains!!! The open-ended fingertips  allow for the gloves to be worn even when I am using my tablet.

The material stretches gently, but provides light support. Breathable and moisture wicking, using these overnight tames my tendency to clutch my hands into a contracture while sleeping. Although the gloves take a few days to get accustomed to and sometimes I get a sore area on the skin between my pointer finger and thumb, this never causes further issues or takes longer than one minute to forget.

The seams are well-secured and even. The glove is sturdy to all day use and the dark color hides accidently stains until the next wash. I wash mine in the sink and hang them on the towel rack to dry. Consistently, the elastic pressure continues to provide the same support and relief as they did on the day of arrival. The material is warming, which is something very important to those of us with very cold hands (despite our warm hearts)!

The pain relief provided to my arthritic hands is significant! I love the pressure, seemingly diffusing the pain response when worn an hour or more. I can take them off an hour later to find a reduction in the swelling and a satisfactory level of pain relief to type or write for a little longer without a break. Employing these gloves will do the same for anyone experiencing pain and stiffness secondary to swelling in the hands. Compression is well known for its medical benefits in treating chronic pain and Vive compression gloves live up to the expectation!

#5 TENS unit

Premium TENS/EMS Reusable Self-Stick Gel Carbon Electrodes
A TENS unit is a must have for anyone living with a chronic condition causing frequent muscular sprains, strains and tension. Over the years of dealing with progressive musculoskeletal pain, my TENS unit saved me from going to the urgent care more than once!

With my disease process, strains and sprains are a part of everyday life, but having a this TENS unit on hand makes a big difference! I can lay in bed in utter despair due to pain or lay in bed receiving relaxing, massage effect from the stimulation this little unit provides until my muscle tension dissipates. I’ll choose the latter.  Amazon has loads of TENS units available for you to review here. Be sure to pick up the electrode gel and extra pads because this will be the first thing you run out of!

#6 Distraction Techniques

The other day during a haphazard scroll through Facebook a Nursing Page I follow posted the following meme the Willy Wonka meme regarding the patient’s report of pain versus the nurse’s perception of the patient’s actual pain level.
Tell me again how your pain level is 10/10 while your texting and watching your laptop
Tell me again how your pain level is 10/10 while your texting and watching your laptop

Any nurse sharing this meme should be ashamed and quit nursing. Distraction is one of the first interventions discussed in pain management courses during nursing school. Distraction is an effective, positive coping mechanism in dealing with pain levels of any intensity.

When I was in the final stages of labor with my son, I painted my nails and did my makeup all while waiting on his arrival. It was the only thing I could do to keep me from being overtaken by the painful experience. In regards to chronic illness, during every single one of my hospital admissions my laptop and cell phone served to distract me from the miserable experience of being hospitalized. If it weren’t for the countless hours of streaming media between Youtube, Amazon Prime and Netflix I would have lost my mind a long time ago living with chronic pain on a daily basis!

Distraction is a great technique for diverting attention away from the pain of an experience. Never let any nurse bully you into thinking true pain is staring blankly into space. Not only is this maladaptive but it will make pain worse! Instead, remind them of their nurse’s training with this tidbit provided and watch how quickly the attitude changes. Then, continue to use whatever distraction techniques works best for you.

As I said, one of my favorite ways to distract myself is with streaming media. I have a Youtube Red membership because advertisements, but even with a free account access to original content is never ending . With this and my Amazon Prime membership, I can always find something of value to distract me from my pain enough to make life a little more worthwhile.  Prime benefits must be made for Spoonies because the extra services and perks to the membership save countless spoons!

My relationship with Amazon Prime was on and off from 2010 to 2015.  Amazon makes it super easy to cancel the membership before being charged as you can initiate this action immediately after sign-up and still enjoy a full 30 days of prime membership benefits!

Try Amazon Prime FREE for 30 Days!

Since 2015 I’ve maintained our Amazon Prime membership as it offers a load of benefits beyond the 2-day free shipping saving us hundreds of dollars and loads of time. With Prime, I get access to Prime Video, Prime Music, and Kindle Unlimited all under my annual membership fee. All these services help to distract me from my pain so often that I think I would cry if we lost our membership!

The benefit far outweighs the cost when considering how much these services cost individually from other providers.  My household used to pay $10 a month for a streaming music service, $20 a month on video streaming services, and at least $50 in video rentals a month. That’s $80 a month in just entertainment, which adds up to almost a thousand dollars a year!

Prime media streaming services offer a massive catalog of music, books, movies, tv series and documentaries to keep me distracted from the toils of chronic pain.

With access to thousands of Kindle books free with my Kindle unlimited add-on subscription, I am  learning new things and increasing my reading speed. This is great despite my cognitive and neurological issues troubling most of my days.

If there is a TV series on premium cable I want to watch, Amazon makes it available as a series to purchase and stream or I can just add on a premium channel to my Prime video subscriptions.

Not to mention the fact that all the previously recommended products were purchased via my subscription!

Give Amazon Prime a test run free for 30 days. The offer is super transparent and canceling is no hassle under the account tab with a few clicks of the mouse.  You get loads of streaming distractions that will be sure to make your nurse spend her off time making mean memes about patients instead of enjoying life!

In Conclusion of The Chronic Pain Toolkit

Successful pain management is multi-faceted and adaptive to individual needs. I put together this Chronic Pain Toolkit as a resource for those struggling to find nonpharmacological pain management to complement medically managed care. While this collection of strategies is not a substitute for medical advice or direction and is for informational purposes only, all too often practitioners fail the chronic pain community with a lack of direction provided to patients regarding non-pharmacological pain strategies. With balanced tactics against chronic pain outcomes improve and quality of life increases!

My Chronic Pain Toolkit


Thanks for reading! What are some ways you deal with chronic pain? What ways don’t work? I’d love to hear the contents of other Spoonie’s Chronic Pain Toolkit! Light and Love my sweet Spoonie friends! <3


Content originally posted on Stomach-vs-Heart.com and migrated to OnlyinthisHead.com because of updates to SVH’s purpose. Read more about the changes coming to Stomach-vs-Heart here.
Please subscribe here for updates to Only in this Head: Chronic Illness Life and here for updates to Stomach-vs-Heart: The Art of Survival. 

❤ Thanks for reading and may your days be blessed with peaceful calming vibes❤

My goal is to provide valuable information thru chronic illness product reviews whilst intertwining the account of my EDS history and diagnosis. My hope is my work will serve as a beacon to the undiagnosed Zebras looking for examples of Zebra life as well as providing diagnosed Zebras with real erudition on the innumerable goods marketed to those enduring chronic disease and debility.

While an EDS diagnosis doesn’t include a cure, employing multiple strategies improves quality of life, invariably improving the overall prognosis of this insidious process. My mission at Only in this Head is providing sincere product reviews the chronic illness community can trust❤

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