Hi everyone! Thanks for visiting my blog. Many of you know my story in parts or whole, over years or just in a few days. I created this blog out of your requests & my benefit of putting words or pictures to my experience. As you read, explore & think, feel free to ask questions, comment – complaints or compliments, or just move along.
So – what exactly is the deal with me?
From the beginning, I have a genetic disease – Ehlers Danlos Syndrome (EDS), hypermobility type specifically (hEDS) – which affects my body’s creation of collagen. Collagen is like the glue that holds the body together; it’s everywhere, in bones, skin, ligaments, gut, even the eyes & ears. In my case, hEDS has caused issues mostly in my joints (they are loose, injure / slip out of place easily, and don’t heal well) and my gut (poor motility, leaky). hEDS showed up in little ways for my entire life, from struggling to hold a pencil as a little kiddo to tearing a key ligament in my thumb grinding medications in Fall 2018. It was not officially diagnosed until June 2017 (33 years old) – prior to this my symptoms / complaints were ignored, written off or blamed on hypochondria. Sadly, this pattern is fairly common with EDS; there is ongoing advocacy for recognition.
Alongside the hEDS, I have dysautonomia – dysfunction of the autonomic nervous system (ANS). The ANS controls all those things we don’t have to think about – like heart rate (HR), blood pressure (BP), temperature, digestion, sweating, etc. In my case, I developed difficulty with regulating heart rate and blood pressure in response to being upright vs. laying down. The ANS is supposed to adjust when we get up to ensure the entire body, especially the brain, gets good blood flow – without it, we get lightheaded, maybe pass out. I developed this in late middle school. It’s actually surprising it was diagnosed correctly back then. Over time, I learned to adjust but more recently my ANS has been under more attack by some autoimmune diseases. So, I have more issues with regulation of these functions.
To round out the pathophysiology story, I have developed a few autoimmune diseases (when the body’s immune system accidentally attacks itself) over the past several years. I have Hashimoto’s hypothyroid, Celiac disease, and antiphospholipid antibody syndrome (APS). These antiphospholipid antibodies have attacked the ANS and well as pain fibers and increases my risk for clots forming. There is a lot of brain fog (mental slowing) that comes with dysautonomia (the brain needs blood & oxygen) and APS (Hashimoto’s too, I’ve heard). These autoimmune attacks have caused various damage over the years. Unfortunately, nerve damage (especially to the ANS) does not recover well.
Symptoms: Due to the gut dysmotility, I cannot tolerate sufficient eating or drinking or (at this time) tube feeds. I “eat” my calories in the form of a bag of parenteral (outside the gut or intravenous) nutrition which contains fats, proteins, carbohydrates, vitamins, minerals and electrolytes. It is closely monitored & adjusted through pharmacy experts. I am also working on tolerating some “trickle feeds” into my J tube to keep my intestines alive on the inside. Due to the dysautonomia, I have a lot of lightheadedness, near fainting, rapid heart rate as well as some temperature instability. Nerve damage, dysmotility and joint instability all contribute to pain in most parts of my body. & now my bladder for which I am needing a catheter (from the EDS & ANS nerve damage). When we put it all together with multiple hospitalizations, illness, etc., my body is pretty beat up, weak and fatigues easily.
Does that all make sense? Please feel free to ask questions. If I am not comfortable answering or do not know the answer, I’ll let you know.