About

Welcome to my blog Only in this Head! This blog is the personal chronicle, endeavor and cathartic action of myself as I journey space, time and the in between all whilst surviving the pains of the genetic disorder Ehlers-Danlos Syndrome and several other comorbid conditions.

I am the author of this blog. You can call me Dawn Marie. 20141008_135857-MOTION

I’m a 35 year old mother, wife, daughter, sister and former nurse as far as my societal titles go.

My interests include theology & esoteric researcher. I am not religious, but more inclined towards spirituality. The arts and music speak to my soul. The concerto makes me cry tears of deep joy. I enjoy exploration of the collective unconsciousness and believe in the spectrum of energy the eyes cannot register. Special interesting is a hobby of mine. Most people find me strange, but very pleasant and easy to get along with in general terms of speaking.

 

 

 

By these photos in this set, I bet you couldn’t tell them I am very sick and battle for my health more often than most. Until very recently, no one understood exactly how sick I was because I lacked a diagnosis to tie all of my complicated, multi systemic diagnoses together. Finally in 2016 after yet another major decline with my health and 3 week inpatient hospitalization I found out exactly why attaining and maintaining health  was just so difficult.

I was diagnosed with Ehler Danlos Syndrome in January 2016 and Postural Tachycardia PicsArt_04-25-10.29.53Syndrome in February 2016. My first major hospitalization for issues related to this disorder was in 2007. I am working to release my Ehlers-Danlos Story as a book because the story spans the course of 20 years until my diagnosis and there is no way to easily let go off all that information in a blog post. Please subscribe for updates as I will be working to release my Zebra tale by the end of 2016.

My ability to work as a registered nurse or in any traditional sense is lost to the pain and discomforts of my conditions. The nature of progressively worsening conditions is evident as I am bed/chair bound and rely on my wheelchair to get anywhere beyond my bed. The unpredictable nature of my flare ups prevent me from making and keeping plans. I’ve lost 50 pounds in the last year due to fat malabsorption and likely the progression of EDS throughout my GI system.  The list could go on, but safe to say I claim the title disabled. 

Life is different now and I am adjusting. Because I always dealt with some level of illness, I adjust to life’s peaks and troughs as if it were second nature. However, this trough became the worst and I’ve yet to be able to regain my strength and ability. With my EDS Diagnosis I finally know, there is no cure for me. Rather than drown myself in depression, I plan to turn this experience into something beautiful and purposeful in my world.

With great loss and trial comes great understanding. The mission of this blog is to serve as a beacon in the night for others lost in the land of undiagnosed health problems. Perhaps through the reveal of my own chronic illness story, another may find the information and understanding to aid their own chronically ill life story. In raising EDS Awareness via telling my tale, I hope to save others from the damage possible when operating with EDS unawares.

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This blog will include product reviews with affiliate links, sponsored posts  and ads designed with products for Spoonies. Still in conception, this blog will review natural organic beauty products as finding HBA products safe for my delicate system is too much of a challenge not to share with others suffering from the same unfortunate problems. As I evolve my Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome Blog I hope to create amazing content spoonies can trust for sincerity, entertainment and aesthetic value!

Thank you for taking the time to visit!

Please subscribe for updates to get notified of the latest content!

Many Hearts and Spoons ❤

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12 thoughts on “About

  1. […] My major decline with Ehlers-Danlos Syndrome in 2015-2016 changed my life in ways I am still adapting to as I author this post. All the years of chronic, invisible health issues were finally “officially” diagnosed by a geneticist in the winter/spring season of 2016. You can read more about my health struggles and the purpose of this blog on my About Page. […]

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  2. […] Thanks for checking out this post about maintaining weight and adequate nutrition with chronic illness processes affecting intake and absorption! I hope this article is helpful to those struggling for relief from the myriad of symptoms nutritional deficiencies cause and/or aggravate.  After a decade of struggling to maintain my weight, this plan is really giving me some relief after many months of more severe symptoms. While it may be inevitable, at this time this plan is fending off the alternative of a tube or IV nutrition with high stakes consequences like infection and failure. Finding a plan that works for your individual body is no easy task but finding one that works can make  a big difference in the quality of Chronic Illness Life with Ehlers-Danlos Syndrome! […]

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  3. […] Hello! Thanks for joining me for the fourth week of my Thankful Thursdays series, running until Thanksgiving 2016. Chronic illness leaves little room for gratitude but focusing on the good in life helps to reframe this experience into a productive perspective. Without my gratitude, I would sink within all the negative experiences associated with my Chronic Illness Life with Ehlers-Danlos Syndrome.  […]

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  4. […] Hello there! Welcome back to Thankful Thursdays, my gratitude series running until Thanksgiving 2016 in which I lament on the good in life through the challenges presented by living with Ehlers-Danlos Syndrome, POTS and several other associated chronic illnesses. This week’s post is a day late due to several factors adding up to Chronic Illness Life with Ehlers-Danlos Syndrome. […]

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