A Long-Winded Exercise in Honesty and Exposure

Let’s just get it out there. It’s probably no secret I struggle with depression. Many people do and it’s not something to you, usually, easily see. Just add that to my list of “invisible illnesses”, because it’s that list that generally causes a bout of crushing sadness. That, the hormones from the birth control I have to take for endometriosis, and the fact that I often don’t get proper nutrition, my blood sugar is unstable, and vitamins and minerals are outta whack. Oh, and that whole eating thing.

I try not to talk about it here, have talked about it on Facebook, but why? Why haven’t I opened up about how fucking awful it is sometimes. Maybe if I did, I wouldn’t entertain thoughts of a quick exit. You see, I have idiopathic gastroparesis. It is generally associated with diabetes (caused by damage to the vagus nerve), but I am not diabetic. Frankly, I chalk it up to starving myself in high school, sadly, to please some asshole I was dating. I then gained quite a bit of weight when I moved to California. All the wear and tear on that nerve might have done it. I’ve been told it’s possible, but who knows. I don’t really care anymore how it happened. All I know is, symptoms started at least as far back as 2006. I was in college and at the time, it was just extreme bloating and discomfort, always at night. It, along with my “introverted artistic sensibilities”, made me a little anti-social. It wasn’t until 2010, when I finally had an adult job and health insurance, that I was diagnosed (gastric emptying study). In the interim, I thought I was allergic to something. I would try cutting out wheat, dairy, but never thinking that healthy things like raw foods and nuts were actually making it worse. By then, it had become painful and I began throwing up. I dropped quite a bit of weight, but actually felt better. I feel a lot better, physically, when I don’t eat, but a) I love food and b) it’s kind of essential (food and mood, baby. food and mood).  (I was also on a clinical trial drug that helped immensely.   It stopped working in early 2014.)Screen Shot 2015-03-24 at 9.13.24 PM

I post this picture with Facebook comments not to make ANYONE feel bad, but just to give some sort of perspective.  Sure, I look “good” and healthy even.  And I was feeling alright, because I wasn’t eating.  It’s taken me awhile to come to terms with it, since I gained some wonderful body image issues in my teen years, but my frame tends to rest well at about 130-135lbs.  For the record, I’m 5’3″.  Maybe that’s chunky to some, and to you I say, check your fucking head.  Maybe that’s too skinny for some, and I say….well, I guess, check with a doctor?  Because it’s not.  The point is, you never. fucking. know.  You never know what is going on with someone.  And while there was a part of me that relished in being skinnier and being complemented.  There is/was another part of me that wished I could come by it another way.

I bring this up now because it’s happening again, slower this time.  It’s not as noticeable, which, oddly enough, makes it worse.  I have a new job, a fairly physical, 40 hour a week job, with new co-workers that I have to slowly and carefully educate, always minding how I’m coming off so I seem “believable”.  I worry every time I eat anything at work that they won’t believe me.  I don’t even like to eat in front of anyone anymore, lest it misinform.  Just know that if you see me eating, I’ve made the gamble to deal with the aftermath.  The pain usually takes anywhere from an hour to three to set in, so you probably won’t even see it (unless it’s a bad flare (yes, it comes in flares) and it happens in minutes, that’s when I get skinny).  Everything is timed.  Everything is a judgement call.    But let me tell you this.  There is not a day that goes by where I don’t feel like crap.  If it’s not the nausea, it’s the pain.  If it’s not the hunger, it’s the pregnancy belly bloating.  If it’s not the blood sugar it’s the lack of _____ vitamin.  I work in food service, so luckily I have not thrown up at work.  Because I hate throwing up and will do everything I can to avoid it.  I also have to wear pants and pants hurt.  It’s why I built up a collection of dresses and skirts in my “business casual” former lives.  But now these fucking pants.  Yeah, I know there are a lot of people that don’t like wearing pants, but by the end of the night, it feels like that waistband is a rubber band full of tacks.  It’s why I have so many clothes.  I have to.  Because they have to range from a size 4 to 10.  It’s these little fucking things that you don’t think about until you have to deal with it.  But these little things, they add up.  Things like trying to avoid things that make you throw up, things like plain water, “too much” food, and crying.  Hooray!

And then you have to move home, leaving a place you loved dearly, because you feel like your body is failing you and you don’t know what to do.  Because you’ve always been an independent person and it scares the shit out of you to have to ask for help, to think about being taken care of by people that YOU should be taking care of.  Because you can’t keep taking two buses to get to doctor appointments that lead to no answers, and only leave you more frustrated and alone.  Essentially, for the last year, I have been having what feels like neurological issues.  My cisapride (clinical trial) drug that worked well for three years stopped working and I started getting twitching, itching, burning, numbness in my extremities.  I’ve seen two neurologists and two psychiatrists, because if there’s nothing wrong with the few tests they run, they insinuate it’s all in your head.  Don’t get me wrong.  I probably should be seeing someone, but for the depression and the frustration caused by chronic illnesses and the fact that I CANNOT GET ANY FUCKING ANSWERS.  No one wants to play Dr. House and I do not have the energy to do this on my own, to fight for myself on my days off when I only have the energy to sit quietly at home and read.  It’s very hard to be your own medical advocate.  It’s draining.  Godspeed to anyone who does it, for themselves or others.

So, here we are again, trapped in a, yes, I’ll say it, shitty job.  I came home, in debt because I wasn’t working enough, scared to apply for disability because I know GP, endo, depression is not enough.  Scared to apply because I don’t want to be a drain on anyone or anything.  I took a job I was worried I couldn’t handle, physically, but figured it was only 30-35 hours a week and maybe it would be good for me to move around rather than sit at a desk.  I took a job with a company that I foolishly thought was based on community, helping people lead better lives through natural foods, being understanding.  And it is, to a point.  Most there are, but humans are humans and when you see someone not smiling all the time, there aren’t a lot of people willing to dig deeper.  But in the end, it’s a company, nearly a corporation in the layers of management.  And I just got a “talkin’ to” by said management.  Let it be known, this is the only person I have encountered that has made me feel this way.  To dismiss my explanation of battling chronic illness, to ask me what the difference is between 35 and 40 hours a week, what those five hours are really, to ask what the difference is between closing at 8pm and 9pm.  These are the marks of an uncaring person.  To tell me that I seem unhappy (when I maybe see you twice a week for a few minutes) and, essentially, I need to get happier.  These are the marks of a complete asshole.  I really don’t care who sees this.  That is a shitty thing to say to someone you don’t know, whose battles you don’t know.  To sit there, making twice what I make to do half as much labor and tell me that I need to be happier about making $9.25 an hour to kill my body and my emotional well-being, makes. you. a. shitty. person.

So, yeah, things have not been good.  I feel trapped and no good can come from this girl feeling trapped.  My hands and feet have been going numb and cold and tingly again, this time lingering for hours on end rather than 20-30 mins.  My vision is blurry, usually in the morning, sometimes all day.  I’m out of birth control and need it to keep the endo and cysts away.  Certainly not for what it was intended for, THAT’S FOR SURE.  It doesn’t matter because I don’t bleed anymore.  Last time I went for nine months, this time it’s been four so far.  The last OBGYN didn’t seem too concerned, so I just gave up on that front.  I can only fight one fucking medical battle at a time and it’s the nerve issues are front and center because I just want to know why and not have it be another damned thing.  I’ve been at this job for only 2 1/2 months now.  I get health insurance at three months and now I have to wonder if I can even make it that long.  Now I have to “prove myself” to someone I have absolutely ZERO respect for, not only because they don’t seem to know what they’re doing, but they DO seem to know what they’re doing.  What a sweet gig.  $40K a year to show up for a few hours, sometimes “work from home”, nitpick on your underlings when you’re there, and the worst part, to not give two farts for your employee’s actual well-being.  ZERO respect.  You get what you give, brother.

2 thoughts on “A Long-Winded Exercise in Honesty and Exposure

  1. I try my hardest to remember those words, “you don’t know their struggles.” You have all my sympathies, for what they are worth to you and my deepest hopes for answers. Being a male, I’m a total baby when it comes to pain and cannot fathom or comment on what that must be like. I am moving back to Lawrence in the near future and I’d love to catch up.

  2. I’m so sorry you are having such a rough time. I totally get everything you just wrote, here. One of my many invisible, chronic illnesses is severe gastroparesis. I currently have a feeding tube which was surgically implanted into my abdomen on July 18th, 2014. And, this bit about Dr. House, let me know if you ever find him. I know this frustration all too well. It’s a very difficult way to have to live our lives like this. Just know you are not alone. I’m here any time you want or need someone to talk to or vent. Have you ever had a feeding tube? I have to have it to keep me alive. It only takes 2 bites before I become so uncomfortable and distended with nausea and cramping. Sigh……………… I’m not diabetic either. Idiopathic gastroparesis! I don’t know of a whole hell of a lot of people with this terrible disease. Mine doesn’t come and go, it doesn’t go into remission with exacerbations. It’s every day, all day………………………. I wish you the best on your journey. Take care. xx 🙂

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