Once upon a time, when energy and ability measured more towards my favor, I often explored the swanky nearby city of Pittsburgh, PA. Living in The Ohio Valley for over the quarter of a century afforded the excitement of the Steel City within arms reach. Anytime I could reach the Burgh, I was there, enjoying the adventure for all it offered.
Pittsburgh is always an interesting city to visit no matter what the circumstance. The hustle bustle of the city is still scary to me but always interesting at the same time because it offered a glimpse of a realm I knew zilch about. Once I hit my twenties, I found myself in Pittsburgh quite often for social scene events, concerts, dining, the arts with occasional drinks and dancing. From the Southside to Carson Street to The Strip District, and Downton Oakland, I soaked up as much Pittsburgh as I could in my earlier years.
Many of my most favorite memories were spun from the Steel City. My hope for 2017 is returning to explore the Burgh again with just an iota of the vigor as before my health struggles overcame me. I want to explore the aesthetic parts of the town, photograph beauty, and experience all available to me while this ride in life lasts.
2016 was a year of painful losses but also extraordinary gains.
For once I feel almost 100% understood both interpersonally and in venues of healthcare when advocating for myself. As I learn how to live life from a sedentary position I am afforded opportunities to delve into personal studies and create artworks. Don’t get me wrong, I would give ANYTHING to not have Vascular Ehlers-Danlos Syndrome, POTS, EPI, IBS, PTSD, Anxiety, Major Depression and all these other ICD codes trying to define my existence as a human being. Try as I may, there’s no changing the course of genetics gone wrong from the derivation. You must ride the wave to survive it.
I meditate, avoid all dietary triggers, and actively employ exercise as a part of my treatment plan. I also believe in the power of supplements and mind over matter. Still, my sick remains.
It is not something to “fix.”
Rather, it is something requiring damage control tactics, preventative planning, and ample recovery times whenever insult or injury is involved.
Before my total disability in 2015, I walked without assistive devices. Often times I ran into hip pain, back trouble, shin splints, broken bones and plantar fasciitis but still attended to a truly hectic lifestyle. Despite the constant strife of my gastrointestinal complications, numerous and varying facets of chronic pain, muscle tension and injuries along with the usual EDS hypermobility problems, I managed quite well considering.
The Mad Hatter in Steel City Round Pillow by StomachvsHeart [Image Description: Originally photography by Stomach-vs-Heart transposed onto a throw pillow. The photo is a close up shot of a mural of Tim Burton’s Mad Hatter played by Johnny Dep. This photo was taken in the Strip District of Pittsburgh in 2011.] Available for purchase by clicking this picture!
In the original work of Lewis Carol the Mad Hatter of Alice in Wonderland says, “There is a place, like no place on earth. A land full of wonder, mystery, and danger. Some say, to survive it, you need to be as mad as a hatter. Which, luckily, I am.”
The Mad Hatter in Steel City Round Pillow by StomachvsHeart [Image Description: Photo of back of pillow. It is a solid light purple background with the quote “There is a place, like no place on earth. A land full of wonder, mystery, and danger. Some say, to survive it, you need to be as mad as a hatter. ”
I often reflect on this statement when I retell the tale of my health travails. Especially when I say I managed well. That’s not quite a truth considering I spent much of my 8-year-short nursing career on intermittent medical leave, calling off way more than my coworkers and enduring injury numerous times during my line of duty. Not to fail to mention the fact my lifetime running toll is collectively four months spent inpatient for medical management of all my whack-a-mole symptoms over the course of the last twenty-six years.
From my current perspective, I certainly relate to the Mad Hatter’s statement.
It took too long for my diagnosis and too much damage is done to reverse the course of the degenerative processes at work. I spend time grieving the loss but only as proper. Presently, I focus my spirit on what gives me joy and remedy to my chronic illness blues. I postulate worlds unimaginable to pass the time. I recognize programs across society and wonder if insanity is seeing typical social routines as a fraud, imprisoning generations as worker bees for a false idol.
I put energy into my art, my blog and most importantly my family. I am sick 96% of the time without exaggeration. The ability to devote my good moments to all the above endeavors helps tame the urge to wheel myself outside to tear at my clothes publically while crying out to the sky for answers. Creativity helps me feel prolific while I am not capable of financially contributing to our family.
𝕀𝕥 𝕙𝕖𝕝𝕡𝕤 𝕞𝕖 𝕗𝕖𝕖𝕝 𝕒 𝕝𝕚𝕥𝕥𝕝𝕖 𝕝𝕖𝕤𝕤 𝕞𝕒𝕕, 𝕒𝕣𝕠𝕦𝕟𝕕 𝕒𝕝𝕝 𝕥𝕙𝕖 𝕟𝕠𝕠𝕜𝕤 𝕒𝕟𝕕 𝕔𝕣𝕒𝕟𝕟𝕚𝕖𝕤 𝕠𝕗 𝕄𝕖.
Still, every day I wake up, wondering how it’s possible I’m so unusually, consistently, and disablingly sick for almost two years now without reprieve. What’s more maddening is all the years struggling, unjustified by medical diagnosis and written off blaming ill effects of my psychiatric diagnoses for my physical symptoms. While my medical diagnoses don’t invalidate my psychiatric diagnoses, I say, if my doctors understood POTS & VEDS back then feasibly things would be better at present.
˜”*°•.˜”*°• C’est la vie, as they say, though! •°*”˜.•°*”˜
ℂ𝕙𝕣𝕠𝕟𝕚𝕔 𝕚𝕝𝕝𝕟𝕖𝕤𝕤 𝕞𝕒𝕜𝕖𝕤 𝕞𝕖 𝕗𝕖𝕖𝕝 𝕒𝕤 𝕞𝕒𝕕 𝕒𝕤 𝕥𝕙𝕖 ℍ𝕒𝕥𝕥𝕖𝕣.
I feel the Hatter encapsulated my unique experience with all my chronic illnesses. It was a gauntlet of strategy to jump through the hoops set forth by the medical community when trying to find appropriate diagnoses for my physical ailments when having the bright red stamp of Major Depression, Anxiety, and PTSD in my file. First, they told me its just stress, then depression anxiety and finally the dissociation from my multiple traumas on repetitious levels. Eventually, these diagnoses led into the others and finally VEDS. Long story short: After nearly two decades in and out of both the medical and mental health system, I finally have accurate diagnoses, proper treatment, and recognition for my battle but it’s all little too late.
Wₒᵤₗdₙ’ₜ yₒᵤ bₑ ⱼᵤₛₜ ₐ bᵢₜ ₘₐd ₗᵢₖₑ ₘy gₒₒd fᵣᵢₑₙd ₜₕₑ ₕₐₜₜₑᵣ?