The year twenty-sixteen is coming to a close and I cannot believe how much has changed since this time last year!
Chronic Illness Life with Ehlers-Danlos Syndrome peaks and troughs constantly, often without warning. Since getting my official diagnosis, research on how to best manage my FINALLY named disease helps and I’m adjusting as more things are managed and monitored. Life is SUPER busy right now with lots of changes on the horizon so I wanted to take a moment to update before things get MEGA busy as the upcoming changes go into action.
“Life is a series of natural and spontaneous changes. Don’t resist them; that only creates sorrow. Let reality be reality. Let things flow naturally forward in whatever way they like.”
― Lao Tzu
We are buying a house! Even though I still spend 99% of my free time sedentary, being the most internet savvy in the house led to many hours of searching real-estate listings over the last 6 months since we set our goal on becoming homeowners. I took on the task to the same obsessive degree I take on any project but it finally paid off and we should close on the house by the end of December!
What made this such a difficult task is the size home we needed to accommodate our large family. Currently, we are living in a 3 bedroom house with 5 adults, 1 child, 3 kitty cats and 2 pups. While everyone has privacy, there is little space to spread out and live. The stress of the close quarters is compounded since February 2016 when I became a full-time wheelchair user. Getting around the house became challenging with narrow doorways and halls making maneuvering no easy task. In addition to this consideration, I needed to choose houses appropriate for my mother-in-law who is also disabled with multiple chronic illnesses.
We wanted something big enough to so my mother-in-law can have her own living space and so could we but we would all still be under the same roof. Since the initial event fueling my total disability, we’ve taken to communal living to share the weight of the rising cost of living. The first round was with friends in an effort to eventually move to the great state of Colorado. That didn’t work out. We ended up seeing these friends off and moving my ma-in-law in to share housing costs. Splitting the housing expenses made a big difference for all of us. It is a win/win situation we are taking to the next level by finding a house to suit all our needs to buy rather than rent. The new house will have three living rooms giving everyone a space besides their bedrooms to leisure and commune.
The only thing needed before we can move in is the installation of a wheelchair lift from the first to second floor.
Luckily, my mother-in-law is awarded home modifications as a part of her service in the military so the cost is covered as is the installation. The neighborhood is small and beautiful with a lake nearby. There is a wheelchair accessible walking path through the whole town. We will have a little less than an acre of land so the dogs will be able to enjoy a nice big backyard and the kids are already planning on putting in a garden. The new house is a little over an hour away from my family but not so far it will be very difficult to transverse the distance.
The most exciting thing about the move is I will be able to go to Cleveland Clinic and hopefully get better management for my case of Vascular Ehlers-Danlos, POTS, and some other concerning health issues popping up over these last few years.
While I recognize my treatment options are limited, the level of knowledge regarding these diagnoses is sadly lacking at WVU, save to say a few specialists who actually understand these rarely diagnosed problems. The severity of implications, along with the accepted protocol for monitoring Vascular Ehlers-Danlos Syndrome patients left neglected increases the risk for mortality. My hope is Cleveland Clinic will help better manage my POTS and investigate the possibility of a Chiari Malformation. Another strong point about our move to Ohio is a future of better pain management since cannabis is now legal for medical with initiatives to provide for the need in the works.
Still, before moving all my healthcare over the state line, there are several more medical procedures to complete due to some concerning findings on recent testing. The result I am most nervous about is the mass the found in my pancreas as well as the bulging of the duodenal bulb. At the beginning of the year, I was diagnosed with Exocrine Pancreatic Insufficiency for which I now take enzymes before every meal to aid in my digestion of fat since my pancreas is not producing the enzymes to digest fat on its own. At the time, no doctor was able to give me a viable explanation for this finding other than I needed more follow up.
This is terrifying because my grandmother died in her early fifties as a result of pancreatic cancer the doctors said started in her thirties.
There are days when an excruciating pain under my left rib cage buckles me into submission with my disease process. My baseline indigestion is getting worse. My issues with early satiety began years ago but there are days when it takes me eight hours to get a substantial enough appetite where I can tolerate an actual meal. Suddenly, I started with really bad hiccups that bane my existence at least once daily. I really hate to complain but when each day presents debilitating challenges in this area, worse with each passing year, it is beyond my ability to completely disconnect from the physical experience any longer.
All the years of damage compounded heavily against my nervous system caused my nerve endings to fry out like an overloaded motherboard. The effects extend from head to toe, with my flight or fight response being the most severely affected after my associated dysautonomic GI complications. The hyperalertness of my nervous system is exhausting me in light of this most recent scare. Fortunately, I have the best support system a Spoonie cold ask for as I travel this tale in life and I am managing quality despite the increase in these suspicious findings.
These are all things I remember from my grandma’s battle with cancer so many decades ago. The “Big C” runs thick in my family so each cancer scare from my health causes my anxiety to spike to painful levels while waiting on the results. Still, I wonder how many cancer scares one person can have before it’s actually cancer. I get a cancer scare every few years since beginning adulthood. To avoid the massive weight of my own mind, I focus on creating, my interests and anything to make myself believe this stuff is no big deal. Still, after getting my raw genetic data analysis and looking round at my risks it feels like it is only a matter of time before the game of hide and seek ends.
To distract myself from the over activity of my mind, painting and other forms of artistic expression are now my outlet and passion. I love painting because it slows down my thought processes and allows me to separate from the bridge of life as I step into a serene mindfulness state of mind. I have several pieces nearing completion and so many ideas to come as time and health allows. My hope is to stock an online gallery of my work over at Stomach-vs-Heart: The Art of Survival. Art is my most favorite therapy for my mind and body when other tactics are no longer feasible.
I used to take nature walks and drive to shake off stress but since getting out of bed became a three-hour ordeal and West Virginia is lacks in wheelchair accessible nature trails, my coping strategies began changing by necessity. Driving is out due to vision loss, sensory disturbances, limited range of motion in my neck along with numbness and tingling in my extremities. Of course there are many days I am too ill to even sit up in bed let alone venture out into the world.
My adapted coping techniques focus on activities to enrich my soul without exhausting my mind and body. Usually, I keep afloat the tides of chronic disease by employing art as a means to transmute my suffering into something greater. The way art works, quieting my never ending neural dialogue stream and frazzled neurons, distracts my attention from the woes of chronic illness life in a way no medication, supplement or salve could ever achieve.
I soon start another round of modulated physical therapy for my neck pain. While I do well to keep up with my physical therapy exercises at home, the benefit of the more therapeutic component of physical therapy is something I’ve need for awhile. My neck and upper back, as well as lower back and hips, cause issues if not from swelling and dislocating, it is a burning nerve pain gnawing away at my energy and mood. An incidental finding on my cardiac MRI indicated I have a spinal hemangioma on my lumber spine. This may be the cause of many of my pain issues in my back as well as the sudden issues with urine retention which may result in my having to self-catheterize to prevent complications. I have a CT scan at the end of this month to see what else is going on in there from a focused perspective. This is long awaited as my back feels as though it is crumbling beneath me and these problems began plaguing me at as early as fourteen years old.
Just another reminder of my ancestors as I recollect tales of my grandmother needing several bladder surgeries as well as a first cousin on the same side. When I look at my genetic data obtained for free through a wonderful program called Genes for Good, I see why my former physician always said “Next time you decide to be born, choose better parents.” No offense to my parents or any of my family but our genetics are a big bucket of mutated function and high susceptibility to disease. I think of my life traumas in relation to my shoddy genetics and no wonder my life’s challenging. All branches of my family tree harbor the decay of illness and the rot of cancer and this makes sense against the instability of health.
Last week my uncle died after a battle with cancer he won but later developed complications of some other processes ongoing in his body. I imagine some of these processes are EDS related. It makes me shudder to think of all the pain he went through, unrequited over the years. He was in his late fifties, struggled with severe back pain due to degeneration the last few decades of his life and his cancer started likely ten year before diagnosis. He struggled with quite a few health problems. He was an impeccable nurse and talented singer who I could talk to about anything and everything.
My uncle was the first of my mother’s siblings to pass away and the only immediate family member death on my mom’s side since my grandfather died in the early 2000s. I see the pain all over my mother as she re-experiences all her most painful losses through his passing along with the new wound of losing him all too soon. I behold with adoration as my mom morphs into the matriarch of my family during this trying time. She holds together the kinship just like my grandmother did when she was still living. Watching her bloom into her greatest version with titanium-like strength in the most difficult of times is an honored experience driving me forward as I hurdle my own challenges in life.
As the year winds down all these aforementioned parts of life are making 2016 a year I am glad to say goodbye to. As we prepare for the move soon after the first of the year, I am struggling not to blow my top not being able to do much to pack. I have faith in my hubs ability to get it all done but my extreme need for order and routine to moving is trying to warn me otherwise. Everyone is excited to move on with life from this town and its memories. Blogging may take a backseat as these transitions rise but my hope is to write a little about my experiences every day, whether I publish it or not. Who knows? Maybe I’ll end up publishing more content than I would otherwise in the long run!
In closing, I recall my former self, this time last year. Walking was just beginning to become impossible without aggravating my POTS to the point of passing out. Every ounce of energy I put out beyond basic functions negated two more as a penalty in this vicious process. While I considered things were going downhill, I never thought it would happen so fast. What is it all for? The question is ever present in my mind, trying to understand all these challenges involved with chronic disease and progressive disability. I feel much like Alice tumbling down the rabbit hole, unsure of where I am going and fearful I may never find the way out.
Even so, life is good. Despite the depravity of illness and untreated symptoms there are many things to smile about. I have a loving family who care for me greatly, both existentially and literally. We are moving into a beautiful home, big enough to house our love for each other. My health is a constantly changing form but now with diagnosis I feel better prepared for the path to come. As the year winds down and the countdown to the New Year begins I am happy with all the choices leading me to this place in life I call home.
Thanks so much for joining me as I recount my journey in Chronic Illness Life with Ehlers-Danlos Syndrome. Talking about the real life experiences medical zebras go through is the number one way to raise awareness about this rarely diagnosed condition but also is a great way to connect with the countless EDSers online working to shed light on this challenging, individual specific disease process widely neglected by medical communities around the world.
New to EDS? Don’t worry! I have you covered with the links below!
- Ehlers Danlos Syndrome (EDS): Simply Explained
- New to Ehlers-Danlos Syndrome? This Post is For You!
- My Ehlers-Danlos Syndrome Medical History
- Ehlers-Danlos Syndrome: My Journey to Genetics
Please subscribe here for updates to Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome and if you want to follow my art journey over at Stomach-vs-heart: The Art of Survival click here to subscribe. Click on the picture below to check out my chronic product review series! As always, many blessings and pure love ❤