When I was 33, I was diagnosed with Hypermobile Ehlers Danlos Syndrome. Anyone reading this may or may not know what that is. Some of you assuredly are asking yourself one question...what in the HELL is Ehlers Danlos Syndrome (EDS-hEDS)? The short version is that I, and many others, have a defective collagen gene. Collagen connects our entire body, both inside and out. People like me suffer subluxations, and dislocations, bruising, autonomic dysfunction (heart rate/ blood pressure issues), etc.. I won't bore first timers to this blog with too many details right away. I'm currently a working mother and wife, who also suffers from chronic illness. EDS is autosomal dominant which means I have a 50% shot of passing this onto my offspring... and so I did...unknowingly. Unknowingly because I was only 20 when I had my daughter so I had no way of knowing any of this. I work for a place I cannot mention online. We shall call it.... 'the office'. Mentioning work online could be grounds for dismissal so...'the office', shall always remain as such. I'm currently sitting in my blue Drive wheelchair that I've modified to look...ridiculous. The hand rests are off and so are the leg rests. So I 'Flintstone's' my way around work with my feet and the help of my arms and hands wheeling around this building. Currently, today is Sunday. It's sunny outside and a chilly Sunday morning. I don't have to work the phones anymore today so...in short, I'm thrilled. My stomach is turning around like a rotisserie minus a juicy, delicious chicken that I can't have anyways. I may yet still do it...eat it...enjoy it...and then suffer it and probably complain about it later. I have another 'comorbidity' (connecting condition to my main diagnosis) of Gastroparesis. That disorder, in short, means that part of my stomach is paralyzed and food moves slowly through my stomach and digestive tract. This grows bacteria and makes you feel sick to your stomach. You may vomit...or things may show some reverse action (very unpleasant, I assure you). So today...today I feel gross. Like a swamp monster covered in slime, seaweed, and moss. I'm exhausted because to have energy, one must consume enough calories (which I cannot currently). I may also need a feeding tube (like many other EDS'ers, but I'll leave that for a future blog). So how does the movie play in? The one I spoke of in the title? Well, watching a movie about a famous cook makes me want to cook. It makes me wish I had more energy or talent. The movie, aside from making me viciously hungry, made me want to start this blog...well rather, re-start this blog. I came in like a bulldozer and wiped out all of my old content in hopes of...reinvention? I have a goal, well, I've had a goal. To make my mark on the world. Cheesy right? I know...I'd feel the same if I were reading it. I'm sitting in...my pod we shall call it, watching this movie in between calls and now, on lunch. The office is a basic office but larger. The ceiling are typical of an office ceiling. The weirdest thing are windows with no latches and cannot open. It's like the sun is mocking me from the other side. It knows I'm trapped here until 3 p.m.. It knows how I detest it when I cannot play with it outside. Eat a brick Mr. Sun. I'm irritated at the sight of you right now. Ok....so I'm jealous...whatever. I also make and sell handmade art. I've not made enough to have any kind of independent living from it, but it helps reduce stress though...now I'm stressed that I can't get things, particularly my art, exactly as I'm wanting it. I love the main character of this movie. So much self-doubt in such awesome packaging. I love based on true events type of stories (which this is). I want to appreciate something as much as this woman appreciates Cilantro. I also LOVE LOVE LOVE and ADORE when the main couple gets back together.
"Woman: Are you back? Please say your back?
Man: *smiles* What's for dinner?".
You see...movies essentially ruin us but sometimes...sometimes those magical moments do happen. My husband is tall and fairly introverted and I can see him saying this to me. There was a time where he read me (yes this is real life) one of the poems he had written, and sat me on his lap to read it to me. It's cheesy and doesn't exist everywhere but that fragment of happiness...that was all for me. The moments are not everyday, but almost always...exactly when needed. Take "P.S. I Love You" for instance...the likelihood that while your husband is dying of terminal cancer, that he would set up some elaborate mailing system in which to continue talking and teaching you to move on without him is pretty much unfathomable. And yet...still so nice to think about. Wouldn't it be nice if our partners planned such things so that a transition such as being a widow may have a softer blow. Too bad reality has a way of saying...not gonna' happen lady! Still...my husband is what you would, and I'm sure the world, would consider a really good man and a really good husband.
Ahhhh, now we are at the part of the movie where she's bathing this chicken in butter. So much delicious butter. You know what, it is no fun seeing the delicious and unattainable, and yet it is like a damned train wreck I can't stop staring at and fantasizing about. That and a crisp bottle of wine. I think the thing I most identify is how this woman displays her nerves. I've gotten much better but I still recognize that part of myself.
S. Hawking died this year. Kicking off 2018 with a bang with the loss of one of the greatest minds of science that has, or ever will, exist. Well it's March so it's more like ruining the world about a third of the way into the year.
So I still have around 3.5 hours left to work and yet I've not actually done any meaningful work. Nothing to impact the world. Nothing that will change the great minds of society. Well supposed 'great minds'. Our world leaders apparently are smoking from the same pipe, and it must be terribly bland stuff because they all look like they have a stick or several stuck up their butts. Honestly, politically, I am an anomaly. Neither Democratic, nor Republican, nor Liberal, or Libertarian. I fall in the middle of everything. An uncomfortable place to be with little to no glory. Well NO glory is accurate, a little is wishful thinking at work.
I have an urge to go out into nature...something that hurts a little more with each thought as my own human nature is under attack from dislocations and paralysis of the stomach. I wish I lived in Colorado so I could drive mountains.
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