There goes that girl with the braces and chair. Hurry! Before she notices us! Feeding tube hooplah!

I'll start by saying that the title has almost nothing to do with this post (haha FOOl you)!
So today, I have to work myself up to finishing or near finishing one of my art projects. This week was filled to the rim with Doctor's Appts which includes a referral to Mayo Clinic. I've never been but my #1 worry is that what if I go all the way out there, and they don't know anything more than what we know in the ways of treatment? BUT what if they do know more? Then what will my life be like? What if I get back to some kind of baseline normal? I don't think I'd know what to do aside being exceedingly grateful. So far we've raised about $2300.00 which is amazing! It took the really hard work of my aunt Candace who is selling jewelry like a mad woman, all over the place and handing out cards and sharing my story. It's amazing and it's so wonderful to get to know her. Our family is a bit, segmented you could say. This experience, I feel, has brought us all closer and I'm even more thankful for that. My uncle Steve helped out greatly as well. It's amazing! I've started to hear from first cousins I've never had the chance to meet before. It's like the dream I've always wanted. More than anything, to have a closer family. Maybe this experience will spark regular contact with these people who share my lineage. I certainly hope so!
So what's with me? Well we are waiting on feeding tube supplies for which I will start overnight feeds. So what does that mean exactly? They take a small flexible tube called an NG tube, or a Nasal-Gastric tube. They feed it in through the nasal cavity (that's going to be uncomfortable), and it goes down into your stomach to essentially 'trick' your body into getting the nutrients. Without smell or taste, this may cancel out some of the nausea and lead to maintaining some of those calories going in. The feed is Ensure which, little did I know, can go through insurance under the right circumstances i.e. slowly starving to death.
What does this mean for work? Well, since it's just over night, the most people will see is the NG tube sticking out of my face. I read this post of a young woman who decorated the outside of hers with jem stones and I have to say, that looked pretty snazzy. Like what Lady Gaga would do if she had a feeding tube.
How's therapy? Going well I think, though she gave me a ton to think about. Listening more, responding less at first feeling, and looking at myself in more of a positive way.
It's been hard not to feel like a failure of sorts as a person. I can't contribute the way I would like, so I feel that I'm failing at that. And at being a mom. And at being a wife. And at being a friend. She's helping me to sift through the lies of what I consider truths. I'm hoping one day all of those thoughts snap into place and I remember that I didn't ask for this either and I'm doing the best I can with what I have. Sometimes I feel like this part is more difficult, than trying to fix the health issues. I know once I can walk again, I will feel more like an actual person and less like a blob sitting in a chair or bed binge watching America's Next Top Model (don't judge me!).
I'm at work currently, and happy to be out of the house. My husband has a cold so don't want any of that. Pretty quiet here, but at least the sun is shining through the windows (even if they don't open).

Health crap and more crap

😌So yesterday's developments are ordering what we need for the NG Tube (feeding tube) and hearing test results.
1. Malnourished.
2. Sluggish Gallbladder.
And just for a little extra element of surprise and fun...my hair is dying and falling out. Well hair isn't entirely alive per say, but you get my drift. Extreme damage from malnutrition=Mia Farrel from Rosemary's Baby coming to a Victoria near you this Friday. It's not what I had planned for my badassary, but I'll slap on some crimson red lip stain and walk...well rather roll around like a MF#$%# Boss!
Ok so maybe not quite like that, but I prefer the imagery to near bald female in wheelchair. My blog, my rules! Take a seat!
Ok, done with the sarcasm...or am I?
Moving on...I have three apt. this Friday including the hair execution. I have the last (hopefully) diagnostic injection that should last around 8-10 hours. So in short, I'm going to actually have a relatively good day. Next thing on the agenda is an infusion at my PCP which will take around 1.5 hours to which I will drift off to sleep and think of things other than infusions and injections.
I have a fun PJ day planned. Total lazy time with a friend that I'm totally looking forward to. Can't do much, but totally can lay around in PJ's and goof around. Low energy, yet fun, activity. Now now...what PJ's to wear?
It's the first time hanging out so it's a choice between standard jammies and a full on onezie though if you don't play that right, people may not answer the door. 'Sorry crazy chick! Not today Satan"!
I'm so wishing it was at least 3 p.m., but not so much luck. It's about 15 minutes to 2 pm with 2 more hours to go. There are worse things. Like drowning, or being lit on fire, so this could be worse. I just wish it would pass by faster. Like the Amtrak. HERE and gone again. Just that fast. OR maybe if I had a perfectly trained clone that could work for me that would be a feat of wonders for which has never before been seen!
I wonder what tomorrow will bring, after the fact. Will I or won't I get surgery? Will the feeding tube work? Will my fingers pull themselves off and run around because they protest to the constant art work?
Stay tuned...

Art progress aaannnnndddd my hands hurt!

So this is my dragon. We will call him Hilbert. In reality, he is part of a rather large art project I'm completing for my mother. One thing she LOVES is my art. My parents home is segmented into themes. The kitchen being cupcakes and ice cream, and the lower half being Asian art created by yours truly. I love to sketch and paint. It keeps my mind off of everything going on health wise. Crappy news from the doctor you say? Why yes! Yes, I will paint a life sized mural for you! It also, keeps me rather calm. Well calmer than I would be otherwise.
I keep re-watching 'Stranger Than Fiction'. Of course, I change it up with each art project. Sometimes it's movies and sometimes it's music. Either way, it takes me out of my wheelchair and into an entirely new place. I could be in England one day and in Fiji the next (although I really wish I was actually traveling).
I suppose this may be what it's like to actually live in my parents house. Hey! Want to go to Asia? Follow me down these stairs and behold the magic!
Ok, so it doesn't actually feel like a different country, still it's nice to have my very own gallery compliments of the parental units.

A feeding tube? #NGLIFE

Yesterday's party included a diagnostic injection that hurt like hell. 1/2 of the series. Here's the short version. Insurance is not wanting to pay for my pelvic surgery to fuse my SI Joint or SIJ for short. So they are making us jump hurdles to get the preauth for the surgery approved. In the meantime, I'm in a wheelchair.
So Friday is my next and hopefully last injection, and then HOPEFULLY, insurance approval. Hopefully...
Today's party includes needing an NG Tube placed. It goes in through your nose and down to your stomach to help you feed. LOL...'feed'....like I'm some creature from the swamp who arises to 'feed'.
I wanted a different version but insurance being what it is...it is what it is.
So here is the fun part...because we fixed my swallowing issue (had a narrowing in my esophagus that we stretched and that worked) the insurance will not pay for the feeding pump. This can go from anywhere from $250-$1000.
I haven't told my husband. Good thing he doesn't just read my blog. I do plan on telling him tonight at therapy. Now, now...don't be judgy and raise that eyebrow at me. Therapy doesn't always exist in issues with marital drama. We are a different case dealing with a disorder that seeks my destruction. So a third party to help us deal with this crap was a welcome addition. Well...to me. My husband isn't someone who likes sharing all of the in's and out's with other people. He isn't someone high strung so I'm not super worried but still not sure of what his reaction will be to all of this.
So I'm malnourished is the reason for the tube. EDS'ers tend to have significant GI issues and there are EDS'ers with feeding tubes of all kinds to help mitigate the complications. The idea is that we give the GI a break with the help of the tube and then through the re-feeding, the body may kick back in on it's own. That's the hope.
One bottom line is NO MORE WEIGHT LOSS. NONE!
I'm 5'9 and 143 lbs. Normally pretty healthy right? It's not when the weight loss occurs too quickly over a two month period. Then we go into anorexia. Anorexia...there are those eyebrows again. Calm down skippy and take a seat. Anorexia Nervosa is the eating disorder. Anorexia is a clinical term for the speed of the weight loss as I understand it. Believe me...I miss food, but I'm pretty sure I'll miss life if I continue to slowly starve to death so I digress.
My silly ass had the entire day off today and what did I do with it? Slept in and went to find out the news from the GI and then decided to go back to work. WORK? Who does that when they are sick? Ok so a vast majority but still I feel pretty foolish. Yet, I do feel pretty good being around other people right now.
Besides there are worse places to be than work. I'm feeling ok about that.

"Office"

Today, another boring day at ‘the office’ while watching ‘Stranger Than Fiction’ with Will Ferrel. If you’ve not seen it, I now challenge you to sit down and watch it. Essentially we have a writer who doesn’t realize she is narrating the life and death of an actual person. There is humor with a twist of serious content, and just for fun, a really meaningful romance. I relate to this movie because we have this man, Harold Crick, who goes about his life of mundanity as an IRS Tax Auditor. He also appears to have anxiety and OCD. His life is perfectly adequate but essentially meaningless. As he discovers his life is being narrates he seeks to prevent his death and winds up doing everything he always wanted to do, but was too scared to do. He learns to play guitar. A fantasy and obsession of mine. Having double jointed fingers doesn’t help in this endeavor but I now have finger braces/splints so I can now bypass that limitation.

I find that I’m wishing I also had an audible narrator to encourage me in a wonderful and interesting English accent. 

One thing I’ve learned from this movie is that our fate is in our hands and it’s all about what you do with the short time that you have on this planet.

So I started doing art yet again after a couple weeks of break from it. I find that it is the best way to vent out the frustraitipns of being out of control with this chronic affliction. That and photography. 

So if I had to narrate my story, I’d say that I’m at the beginning. The beginning of this entirely new life, and I didn’t need Harold Crick’s watch to start it. 

"Waiting"...not today Satan! Clavicle Brace drama and more movie watching.

So since today is all about how many movies I can watch in an almost 8 hour period, I moved on from Office Space to Waiting. I'm remembering vividly why I detest the food service industry. Well...at least I hate working for the food service industry. Specifically anything to do with management. Mostly because it is entirely full of lies. You do get a higher pay, hell even really good pay, however, they leave one very important fact out of the job description. The very intentional thievery of your soul. I'm pretty sure the last restaurant I managed at kept my soul and framed it. Probably show it to new managers as a cautionary tale. But hey, if you are happy with a thankless job then by all means, sign right up.
Hell, work is work...but should work feel like torture? We'll let you sit on that one for a bit.
Wow, they make working at a restaurant look like constant sarcasm and fun. Ok, so the description isn't completely inaccurate. I did have a lot of fun, sarcastic moments that I will treasure in my damaged, dark deep space nine I call my mind. It's a scary place, and here it's on absolute display.

"I hope you enjoy your stay, please turn in your boarding pass to the Cyclopes at the hangar door".


I do wonder why people in shitty moods think that they should go out and spread their utter hatred for the world by forcing themselves upon others, sitting down, bitching the entire time and then....just for fun, skipping out on the tip or the entire check. I hope they know...that when they do this, every restaurant worker wishes, at the exact same moment, that person would get struck by lightning, live, but randomly lick things for the rest of their lives.
Ok...maybe that's a bit extreme but the lesson is, don't be a dick to others if you can help it, and if you can't, just remember it may hurt later.


So here I sit in what is known as a Clavicle Brace. It swoops around both arms and connects and tightens in the back and front. It pulls the shoulders back. I'm using it for this obnoxious disorder called Costochondritis.  If you've not heard of this, hang onto your seats. Ok, so it's not that fascinating but at least pretend for me and just keep reading. Or skip over and WebMD that shit and you'll get almost the same information, only not as cutely provided as I do here.


Costochondritis is this annoying little disorder that can occur more frequently in those with EDS (Ehlers Danlos Syndrome). With this disorder, inflammation occurs in the chest wall where your ribs meet your sternum.


SPOILER ALERT!!


It hurts like holy hell. It hurts like getting stabbed with a serrated knife right in the middle of your chest. Just for fun, I can feel my ribs popping in and out and for a really good time, while unconscious, I can roll over on my right side, completely sublux my sternum and not be able to move until anti inflammatory kick in.


How do you get rid of it, you ask?


Well, time is the most effective tool. It boils down to this brace I have on (which is mildly uncomfortable) to keep the ribs and sternum in alignment, anti-inflammatory medications, arthritis cream and heat. Most importantly is that term 'time' again. For EDS'ers the most irritating thing is that time is almost irrelevant in terms of healing. We don't heal right away in most cases and this is certainly the case with this Costo/sternum thing that is going on right now. There is also a surgery that can occur where damaged cartilage is removed but good luck depending on where you live getting easy access to a surgery you may need. Though I will say in most cases that surgery isn't necessary. The jury is still out on that as far as I'm concerned for this issue.


I'm not having much fun with the insurance either. I need this pelvic surgery that they should, but won't (so far), pay for. Total cost of the surgery climbs up to $18,000.00. Not as bad as some costs, but still bad enough to sweat and wonder which organ you're going to sell off on the Black Market. More on that one later.


It's a weird position to be in to want food, but be scared of consumption. Gastroparesis sucks. More on that later.


So what am I going to do with this day? Hang out with a friend, find comfort food I'll likely regret later, and binge watch some other classics.  Other than that, SLEEP! Sleep is my most important, healing tool. Well it's that way for all EDS'ers I would presume. Without enough rest, you run into a lot of other issues that effect you more harshly if you have a complicated disorder like EDS.


I know I likely sound like... a bit of a bitch, but really I'm not. The way I see it, if I can't laugh about some of this, I would likely fall apart.


The chronically ill will understand. You don't fake being sick. You fake being well. All the time. All while being questioned by the ignorant populous who accuse you of having everything from MS to Munchhausen's. Because loading and unloading my wheelchair is what I call 'a good time', and taking the six medications I'm bound too like white on rice is 'the best time of my life. Almost as good as Disney'.


Mostly, I want to help people. Make them laugh or maybe they will just want to pass the time reading about all of this insanity. Either way...I'm game.

Office Space

I'm pretty sure one of my bosses are exactly like the boss on Office Space. I'm pretty sure I know at least 32 Milton's, and I'm pretty sure I'm Peter.
Oh God...I'm currently staring at cubical walls...someone PLEASE put me out of my misery.
I was mind blown the first time that someone told me that TPS reports ACTUALLY FREAKEN' EXIST in the real world, and they are apparently just as irritating. Oh and FYI, I'm pretty sure I have a 'case of the Monday's' EVERY SINGLE SECOND OF EVERY SINGLE DAY. Or maybe, that's just how I feel right now. I'd like to say I sit next to many happy people, but I'm pretty sure we are all unhappy clones of one another. Cogs in a really boring machine. If you look deep enough in our eyes, you can see that we've likely been replaced by pod people.

Julie/Julia makes me want to be a grand chef...instead of a busted, Gumby, marionette

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.