Chronic Illness Life with Ehlers-Danlos Syndrome: Postural Orthostatic Tachycardia Syndrome (POTS)

Two years ago life changed as I knew it.

The  Reasons: A genetic condition called Vascular Ehlers-Danlos Syndrome (vEDS) and a disorder of the autonomic nervous system known as Postural Orthostatic Tachycardia Syndrome (POTS).

While I talk incessantly on EDS, I should talk more about POTS because it’s a syndrome. This means POTS occurs for a number of reasons.

Syndrome is defined as "a group of signs and symptoms that occur together and characterize a particular abnormality or condition."
[IMage Description: Pexels.com photograph edited for free use. The photograph is black and white showing a person lying face down on the ground amongst a busy walkway, slightly out of focus from the viewer. A test overlay from OnlyinthisHead.com Chronic illness life with Ehlers-Danlos Syndrome and Per Merriam-Webster, Syndrome is defined as “a group of signs and symptoms that occur together and characterize a particular abnormality or condition.”]
POTS is why I can’t stand and vEDS is what causes my POTS as well as almost all my other medical issues over the years. From Multiple Sclerosis to Traumatic Brain Injury, dysautonomia presents differently for everyone with POTS. In short, dysautonomia keeps the body’s fight or flight reaction stuck in an “all-systems-go” mode, creating multi systemic effects.

"Dysautonomia is a term for a group of diseases that include postural orthostatic tachycardia syndrome (POTS), multiple system atrophy, autonomic failure, and autonomic neuropathy. In these conditions the autonomic nervous system (ANS) does not work properly."
[Image Description: Pexels.com photo edited for free use. Photo graph shows one black chess piece sitting upright and a white chess piece lying on its side. The background of the photograph is white Overlayed in black text is OnlyinthisHead.com Chronic Illness life with Ehlers-Danlos Syndrome. There is a quoted definition per Wikipedia, “Dysautonomia is a term for a group of diseases that include postural orthostatic tachycardia syndrome (POTS), multiple system atrophy, autonomic failure, and autonomic neuropathy. In these conditions, the autonomic nervous system (ANS) does not work properly.”]
Unpredictable levels of disability result. While a time-limited frustration for some, in others POTS, presents dysfunctional processes building years of damage atop an already weakened system. The latter often results in early debility with a hefty helping of insult to multiple injuries.

My Personal POTS Story

In my case, the exhausting POTS dance is longstanding. I remember POTS symptoms since ten or eleven years old. What I mistook for normal is ANYTHING BUT!

Symptoms Associated with POTS
[Image description: Pexels.com photo edited for free use. The photograph depicts a close up of an incandescent light bulb glowing bright orange red and broken glass and smoke represent the light bulb is burning out. Overlaid in white text on the photo is Symptoms of an Autonomic Nervous System Burnt Out with POTS. The symptoms are listed in a white, chiller font: Racing Heart when Up, Fatigue, Headaches, Migraines, Lightheadedness, Heart Palpitations, Exercise Intolerance, Nausea, GI Problems, Brain Fog, Tremulousness, Fainting or Near-Fainting, Cold, painful extremities,
Chest pain, Shortness of Breath, Orthostatic Intolerance.]  OnlyinthisHead.com | Chronic Illness Life with Ehlers-Danlos Syndrome
POTS symptomatology sprinkled my medical records since my early twenties. Signs dismissed under common mental illness diagnoses went to the wayside when my gastrointestinal system flared royally at twenty-six years old. My primary focus became taming those symptoms.

Insidiously, POTS cloaked itself as a primary result of mental illness. Then as a secondary effect of GI-related metabolic issues for several years.  Truly, I see POTS as a master deceiver to the diagnostician. My lengthy narrative stands as one of many.

Regrettably, only after a major work injury came recognition of processes complex, difficult to manage, and eluding diagnosis connecting the tandem effects of vEDS and POTS. Between 2015 and now, vESDs and POTS knocked me further still than I’ve yet to reascend. 

Picture from the hospital admission that lead to my officially POTS diagnosis in 2016.
[Image Description: Selfie of author in hospital in January 2016 for a POTS exacerbations and nutritional malabsorption. In the photo is a woman in her mid-thirties with long brown hair and a gray streak, parted to the side. She looks tired and pale with dark eyes. She is not smiling and has her head tilted to the side. She is dressed in a hospital gown with EKG patches and a central line access and dressing visible.]

On a Positive Note

I’m now under POTS specialty management, an integral part of care with autonomic nervous system dysfunction.

Thankfully, completing this extremely important part allows for unequivocal evidence of what I have and  how one manages it. A consult like this follows you throughout the journey as a safeguard when encountering less informed practitioners. Locally, the practitioners continually state the limits on managing my case. Over the last six months of local practitioners basically saying “You’re too complicated and need to go to (insert preferred university hospital here).” I finally get the hint. I accept the referral but the fact my local system lacks skill needed for complex health conditions troubles me deeply.

Grievously, so much irreversible damage is done for the years unmanaged and each set back I encounter seems to drive me down even further. I cannot recoup these losses. It’s enough for most all practitioners giving the grim “You’ll Never Get Better” speech over and over. I hear ya Doc, I can only expect mild improvement and I’m not a candidate for surgery…blah, blah, blah…tell me something I don’t know. 

What Diagnosis Did for Me

POTS and vEDS caused me multiple health crises over fifteen years local doctors never cared to understand.

After transversing the referral gauntlet to no avail, revealing the cause before the effect provides validation for the suffering. I only entertain thoughts knowing “sooner” may equate with a better outcome to motivate my awareness efforts. Dwelling in sadness only begets more despair. Plausibly, finding answers is the most bittersweet moment of my life in understanding the “Why” behind my lifelong relationship with pain and strife.

My official Ehlers-Danlos Syndrome and Postural Tachycardia Syndrome diagnoses ended one journey and began another. Where I struggled for appropriate referrals in the past, now there is no question. Be that as it may, new challenges present reflecting lack of education on new research concerning POTS as well as EDS types. For this reason, my cardiologist referred me to the most revered POTS specialist for the region. In my research, I knew countless POTS patients traveled to see this doctor from all around the nation.

The following link is an affiliate link meaning if you use this link to purchase this book I make a small commission. Please see the Disclosures Page for more information.

The Calling by Blair Grubb M.D. | This book is a collection of memoirs from the well-renowned Autonomic Nervous System Disorder and POTS Specialist. In the short stories, Dr. Grubb reveals the meaningfulness of his journey through life as well as healthcare. Many of the stories brought tears to my eyes, helping me understand there’s is beauty, even in suffering. Click here to purchase on Paperback or Kindle via Amazon!

After nearly a year on the waitlist, we made it to Dr. Grubb’s Autonomic Nervous System Disorders Clinic at the University of Toledo for more functional POTS care so maybe I can stand and walk again or at least not feel so worn out from the surges of tachycardia unmanaged currently.

It was everything we’d hoped for and more! In the last few years of losses, this appointment gave us hope Life will get easier to manage and if not, at least we’ve got the right specialists on our team!

If you’re struggling with POTS symptoms, ask your doctor about a TILT table test. This confirms the diagnosis when read by an electrophysiologist skilled in autonomic conditions affecting the cardiac and vascular systems. Despite common misconceptions, blood pressure changes neither confirm nor deny a POTS diagnosis. Blood pressure changes vary depending on processes behind the syndrome.

TILT Table Test to Confirm POTS
Image Credit: Mayo Clinic 2016 [Image description: drawing of the tilt table test used to diagnose POTS. The patient is strapped to a table raised to a vertical position. The healthcare providers measure blood pressure pulse oxygen saturations and signs of orthostatic intolerance. A POTS diagnosis is confirmed with an increased, sustained heart rate greater than 30 beats per minute with postural change.

Typically, an increase equal or greater than 30 heart beats per minute wth postural changes coupled with symptoms of orthostatic intolerance reproduced within thirty minutes of the position change confirms a POTS diagnosis.

Affirming diagnosis with a TILT test opens access for POTS and genetics specialist consults, perhaps the most important move after ruling out time-limited causes. At this point, it’s extremely important knowing your patient right for second opinions. I found charting my symptoms, vital signs and triggers in a note I request included in my chart expedited the process. Genetics helps determine the cause behind POTS and the POTS specialist helps coordinate therapeutics treatments along with recommendations for relevant follow-ups from other practitioners.

The appointment was approximately two hours with a thorough review of my medical records and subjective history. The important points in my medical history other practitioners previously dismissed received recognition during this appointment. With that emerges access to better-suited treatment modalities. I felt understood and finally confident all the appointments leading me to this one were somehow worth it.

Do what you must to get the right help!

It will take time but you’ll get there!

If I did it you can too!

A Moment of Gratitude

Certainly, getting this far was no small feet I could accomplish on my own.

Without the everlasting loving support from my soulmate, love of my life, and best friend Seth, I wouldn’t have made it this far in getting my health issues sorted out. Thank you from the bottom to the top of my tachycardic heart for all your sacrifices.

Another person who helps by all mean necessary is my ma-in-law, Leslie. Her support and love takes us many miles. She’s a compassionate soul I am thankful for every day.

Additionally, continued support from my parents (Rick & Linda) makes a time of isolation and loss one of the good memories, interesting conversations, and a lot of laughs!!! My folks went many miles to ensure I wasn’t alone in my health crises over the years. Their love and willingness to help is a safe haven I am honorably grateful for. Everlasting love for my Ma and Pa.

Of course, without my kiddos (Emarie, Jordan, and Gavin), my drive in deconstructing this puzzle might use a lot omf! Aside from the obvious benefits, I did it so my children might know what troubles to watch out for. The thought of them going through the painstaking processes I did for answers breaks my heart! I love them with every bit I have to give!

The journey is Far from Over

Conclusively, things are falling into place. Thirty plus practitioners from 2014 to 2017 and still counting. Then fifteen plus in the decade before that. this is typical for both POTS and vEDS. No one should wait so long! 

Raising awareness with my story succeeds the purpose even if only one person benefits from the retelling!

I share my story because I want to help other people, like me with health problems no one could explain. Trust your gut. Get a second opinion. It’s not only in your head! Don’t delay as these problems demand attention left festering alone! Please share to help spread awareness and thank you for reading about my journey <3

Chronic Pain Rehabilitation Programs: A Personal Perspective and Call for Spoonie Opinions

Chronic Pain Rehabilitation Program: A Personal Perspective and Call for Spoonie Opinions Featured Image

Since moving to a state with one of the highest rates of opioid deaths, my new provider discontinued my Tramadol, a synthetic opiate I used for moderate to severe pain. He wasn’t “comfortable” writing the prescription I’d taken for 1.5 years without abuse. Referred to Cleveland Clinic for pain management, we made the four-hour trek with hopes of more specialized view about my pain and management thereof. So came my introduction to the rising trend in chronic pain patients sent to Chronic Pain Rehabilitation Programs.

After a brief records review, a limited physical exam, and hurried assessment questions, the pain management doctor recommended discontinuing the tramadol. In addition to this, he referred me for to the Chronic Pain Rehabilitation Program. He also prescribed Gabapentin, offering an abrupt explanation of the program benefits specific to my pain. He said my chronic, progressive conditions. won’t get better so I must learn to live with my pain now

Let me just say, I am thankful for the gabapentin. Fortunately, the medicine decreases my pain and helps me sleep in ways Tramadol never did. I chalked it up as a win even though I felt miffed we drove four hours for something my local neurologist could prescribe. Still, the referral for the Chronic Pain Rehabilitation Program felt insulting. My hubs thought the same. He sees what I go through every day just to get a quality of life out of living.

A Recommendation for What???

Before the recommendation, I reported on all the non-pharmaceutical techniques used in managing my symptoms along with my limited use of as needed pain medication. I described my dedication to physical and occupational therapy routines as well as my holistic principles used in managing my illness. My active participation in psychological therapy for aspects of my illness made worse by my neuropsychiatric disorders and history of trauma impressed the PA as she stated: “It’s good you already have ways to manage.” My assertion of expectations didn’t include “pain-free” but only taking the edge off a process poulticed daily with complementary therapies. Lastly, I made it clear I stopped the tramadol more than a month prior with no major issues besides an increase in pain levels, fatigue, and subsequent activity intolerance resulting.

Knowing the importance of accurate medical records, I checked the appointment note afterward. I found only a brief note, citing Tramadol and heat for pain relief. The note also included an inaccurate, full body assessment I did not undergo. The doctor claimed he explained the risks of opioids and why chronic pain gets worse with opioid management. He never mentioned any of this to my husband or myself. On a side note, he documented my symptomatology as having a “Fibromyaglianess” quality, a potentially negative term in the mind of the wrong practitioner.

The recommendations for my treatment plan included all the things I already do, almost verbatim in my own words. Yet, no credit for any of my health seeking behaviors. My suspiciousness felt validated with this information. Chronic Pain Rehabilitation Programs don’t treat “addicts” but target people with chronic pain and symptoms, treated with narcotic medications.

I scoured the net for experiences with the intensive 3-4 week Chronic Pain Rehabilitation Program to make an informed decision. In order to do the program, I must leave my family and stay out of town alone. If I went, we must cover all food and lodging out of pocket.

The pamphlet indicates the program includes intensive PT, OT, and CBT while consulting with neuromuscular, neurological, psychiatric, and ortho specialists. Getting patients off addictive medications is the main goal of the program along with improving functional status. The few authentic success stories admitted continued illness but reported better coping leading to better quality of life. Digging passed the gleaming reviews, touting success with over 300 patients a year, I found the program uses “tough love.” 

Frighteningly, many experiences were negative with damaging consequences reported. One account described the prohibition of assistive devices (cane, wheelchair, braces). Another related discharge from the program because of orthostatic intolerance with POTS. Reportedly, discussing diagnoses or pain violates the program rules.The central theme of these abrogating reviews alluded to Cleveland Clinic using ableist strategies in managing chronic, disabling conditions. 

Ableism: discrimination and social prejudice against people with disabilities.

Questionable Practices

Obviously, we all know the benefits of a “well” life style. Even so, we deserve respect for the chronic processes we fight through each and every day. Retraining the brain to focus on the positive is great. What’s not is the practice of invalidating patient’s experiences, efforts, and pain. This isn’t only negligent but downright damaging on multifaceted levels creating the human existence.

More critical and constructed reviews point to the possibility Chronic Pain Rehabilitation Programs stand as a straw man, maximizing insurance payments, ensuring the highest sums go billed and credited without question.

“The rich become richer and the poor become poorer is a cry heard throughout the whole civilized world.” ~ Friedrich Schiller

On the underbelly, the neighborhoods scattered throughout Cleveland Clinic’s complexes suffer poverty with little show of community support from the medical conglomerate. Accusations of a snake oil salesman approach to healthcare echo throughout the less traveled pages of Google, pointing out how Cleveland Clinic uses practices unproven from the realm of pseudo-science.

Pseudoscience consists of statements, beliefs, or practices that are claimed to be scientific and factual in the absence of evidence gathered and constrained by appropriate scientific methods (Wiki).

Is Cleveland Clinic, a hospital setting the bar nationally, forgoing traditional medical models for complementary medicine in efforts to maximize insurance revenues while perpetuating a culture of ableism harmful for those with disabilities with the Chronic Pain Rehabilitation Program?

Maybe.

This all or nothing theme is alarming; Perhaps, a forewarning of practitioners taking our issues with even less concern than we already muddle through. Ostensibly, Cleveland Clinic reinforces chronic illness as a state of chosen neurosis rather than a tangible experience. No amount of mindfulness, stress reduction, clean eating, or yoga can suspend these processes into oblivion, sadly. Nothing stops genetic defects causing chronic disease from making life a living hell given the right stipulations. Absolutely, wellness activities do benefits of wonder for some of us, but not all and not all the time.

Naturally, I am not accepting the recommendation for the program.

The experience creates a sore knot in my stomach. The doctor took my case and deleted all the positives. I’m painted a patient overwhelmed with pain without any coping techniques but narcotics…Oh, and a heating pad.

Truly, I am overwhelmed by pain some days but not to the point I need behavioral boot camp. Frankly, this program might help a limited few but makes an even greater case for ableism in healthcare. Still, what consequences might the Pain Rehabilitation Programs play out in the chronically ill and disabled community?


What do you think? Could Cleveland Clinic’s alternative approaches hold the answers to managing chronic pain without opioid medications? Is taking away assistive devices and barring illness talk a better effort to improve the illness condition? Do you think tough love helps people with chronic pain? Is pseudoscience the only option left for chronic pain patients caught in the teeth of the opioid epidemic? Is there value to pseudo-science practices? If you have chronic pain, would you volunteer for this treatment route? Why or why not?

Please share and reblog with more opinions. 

Thanks in advance!

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!

Please subscribe here for updates to this series and other chronic illness related content.

 

 

 

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

Disclaimer: I recieved my Axon Optics Migraine Relief Glasses 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.

Axon Optics Migraine Relief Glassess Natural Relief from Migraines, Light Sensitivity, and Visual Snow | OnlyinthisHead.com | Chronic Illness Life with Ehlers-Danlos Syndrome
[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 Migraine Relief Glasses was 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 Migraine Relief Glassess Natural Relief from Migraines, Light Sensitivity, and Visual Snow | OnlyinthisHead.com | Chronic Illness Life with Ehlers-Danlos Syndrome
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. 

Axon Optics Migraine Relief Glassess Natural Relief from Migraines, Light Sensitivity, and Visual Snow | OnlyinthisHead.com | Chronic Illness Life with Ehlers-Danlos Syndrome
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 Relief 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. Days if not weeks lost in the fog of recovery. These migraine relief 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. under prolonged stress. Eventually, the thalamus succumbs to a constant state of high alert.

My Axon Optics Migraine Relief 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, Look no further!
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 relief glasses bring back accessibility lost. Axon’s technology provides effective protection and relief without 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
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 provide 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!

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

Preventing Lighting-Triggered Migraines with Axon Optics Migraine Glasses
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!
Click here to read more from Only in This Head's Chronic Product Review Series
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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.

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[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.

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[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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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❤

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