with gravy!

In late March, I was told at work  that I had to start attending EVERY staff event for my department.  By “event”, I mean social as well as work.  Many of these things are inaccessible to me, and some of them are just plain inconvenient.  I’m not sure if this came from my boss or my boss’s boss.  I think the latter, although my boss was in a funk and certainly wasn’t very kind about the demand.

I say that to preface this story.  The other part of the preface is that I am starving.  This is because my gut and stomach symptoms have gone nuclear and taken my nutritional options with them.  I’m not responding to the meds I’ve gotten for gastroparesis.  And on top of it, the lower gut motility has been a disaster.  Landed me in the ER once, and two weeks later I had another round of the cramping passing out horrors. I have to be really careful about taking the meds I used to take for that pain because they slow down the gastric emptying even more.  For the most recent episode, the staggeringly bad pain did not last as long as it had the day I went to the ER, so I guess that’s something.  Something to be happy for. I’m not sure that I can take credit for having managed it better.  Just luck of the draw I think.  That’s how it feels anyhow.  Since meds and activity do not seem to be helping with the gastric symptoms, I am trying diet.  Liquids, no fiber, no raw veg or fruit (i.e. smoothie with strawberries is out), and oh yeah I’m lactose intolerant and I’m still trying not to have high nickel foods like chocolate since that has seemed to help with the mouth sores.  

This does not leave one a lot of options for food, and most of what it does leave is home made, hard to transport, is one more heavy thing in my bag which is already black-hole dense, requires refrigeration and reheating, and so hard to eat between meetings and social events at work stuff.  I’ve asked for a nutrition consult, and I will get one in mid June. In the meantime, I am at 125 lbs now, which is 7 lbs less than I was two weeks ago.  I downloaded a calorie app (not too bad, “My Plate“) so I can see how I’m doing.  I am not a good judge. At some point in the starvation mode, you kind of stop consciously thinking about food.  Last night, when  I did eventually eat, I added in a half a bowl of lactaid milk based vanilla pudding.  I figured that’d pump things up some…but it turns out not so much.  This is why I need a calorie app.  What delayed my eating last night was a social event at work.  We had to take someone out to dinner.  And dinner was about a half mile walk from the office, on a hot day, with coworkers who walk to fast, on rush hour pedestrian traffic-filled sidewalks of Big Northeastern City.  My knee and ankle stopped complying as we turned down the last cobblestone street (oh yeah, big old northeastern city) – at least I made it almost there before the pain started.  We got into the restaurant and my heart sunk when I saw that the host was leading our party up a flight of stairs.  Oh god.  Ok.  Up I went.  And around the corner there was….another flight of stairs.  Holy shit.  So there we sat, perched on the edge of the top-most level floor which was basically a large balcony with uneven floors.  My vertigo/dizzies have been acting up so I sat with my back to the edge – which pointed me squarely at the bar and TV.  

While my coworkers discussed what delicious items they would be ordering off the menu (which had no soups, no baked potato, so no food for me), my attention was drawn to the TV where a heaping spoon full of food was zoomed in on as it gently rotated just enough to let the chunks of food slowly slide off, followed by a drip of gravy.  “Man, that looks good” I thought to myself, only to burst out laughing a second later when I realized it was a dog food commercial.

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  1. Wow. Your story is awful and downright cruel on your co-worker’s and bosses’ part. My heart and mood sank as soon as you mentioned the walk and the flight of stairs. You shouldn’t have to prove anything any longer. They know about your illness (don’t they???) so that on its own should be enough. These feelings I live with them every time my daughter has an outing of any sort. I do a mental calculation of the steps required every time she has to get out of the car to enter anywhere. Walking as become such a challenge for her and a load of worry and concern for me. No human being should ever have to go through such effort. If it were so easy to carry loads of bricks on our own, we wouldn’t need any kind of assistance would we? So then was is so difficult for them to understand? I think this is unacceptable and someone who doesn’t have the disorder needs to go there and slap them out of it. I’m sad and frustrated that you have to go through that. And the saddest part to me is that you end your post like it’s just “oh well…”. I wish I could go there right now and set them straight. I don’t get how cruel life can be. If you had cancer, no one would ask you to go through that. Sorry for venting like this but this kind of stuff is what keeps me awake at night… it has to stop.

    • Eh, the post ended prematurely because my bowel hijacked it. I was given the option not to go, the day of. But after getting a meeting with HR and my boss back at the end of March about my poor performance, which included a heavy focus on office attendance (I’m late a lot, usually because of my gut) and this strange stipulation that I attend social events, I felt like I had to try. It’s pretty clear that I’m being judged as anti-social and not integrating. I’m not sure how to address that other than showing effort when I think maybe I can. I thought maybe I could with this, but honestly, if I’d known it was going to be on the first genuinely hot day and up several flights of stairs, I’d have bowed out.

      I’ve asked for accommodations at work as a way to formalize my limitations as medically necessary and not affect/attitude based, and HR is taking their sweeeeeet time processing that request. In the meantime, I still have this set of expectations (the one including the social requirement) and that’s not up for review until this coming week. And even then, I’m not actually sure the expectations are up for review as much as I am up for review. There are not a lot of refuges for dealing with stuff like this at work (and at school, as you and your daughter know). You do the best you can, and if you have to call in sick because you overdid, well, you call in sick. I feel less bad about doing that now at least. In the past, I’d try to get to work by hook or by crook, or try to work at home if I had to stay here because of illness. Now, I just say “fuck it”. I’m planning on letting them know that (without the profanity) at the meeting. I think they should know the impact that their approach has had.

  2. Anaphylaxing

     /  May 18, 2013

    Eeeeew dog food

    Hope your gi wars settle.
    I just had a batch of mouth sores. Mine seem to coincide with before I get a cold sore. Perhaps coincidence…..

    • I keep thinking maybe mine are related to something like that but so far, no cold sores ever. Just raw, rashy palate. Speaking of, I tried some nutrition shake supplement thing yesterday….oh how it burned. I will not be drinking that again. wtf do they put in that stuff?! I think it was Boost lactose free very vanilla. Very disgusting. I could have taken it if it hadn’t been for the burning, but the flavor plus that = no thank you.

  3. I couldn’t keep forcing myself to work due to my pain (no work-at-home option, which wouldn’t have mattered for me), but even though I disclosed my illness (the misdiagnosis) in my applications, it made no difference. If you can’t paint the building like the other worker bees, then you’re out (where was painting in my job description?). Sorry you have to deal with this, but I suspect this is the norm. Yes, cancer patients get lots of exemptions as when I 1st got sick and vomited from the pain 1/2 the day in the bathroom at work, the cancer girl got to work from home, where who knows what she was really doing. I think they just called me the bulimic girl from all the puking and 90-something lb body. That was in non-profit, so you think they’d be a little more empathetic, but no. Sort of like your job…

    • I’ll be even cancer girl got crap if she didn’t get better fast enough for them. A dear friend of mine from grad school was working as a speech pathologist when she got cancer. Work people were really good initially. That waned when it stopped being time for grand gestures and started being time for just day to day accommodation stuff, like “hey, it’s great that you let me take time off each week for chemo, but could you not use my absence as an excuse to dump the most challenging patients on me so that on the days I am working, I’m working 12 – 14 non-stop hours each of those days?”

      I don’t think it’s malice, not always. People who are relatively healthy have a strange narrative of illness and it significantly impedes their ability to be empathetic. I think that may change as they age, but then by the point it does, they are entering or fully in retirement.

      • The situation I was in may have been unique. Thought that was just the norm based on how I was treated in my part-time jobs later on, and I forced myself to perform well (just couldn’t paint the damn bldg. since my pain is mainly upper body). I worked for a larger non-profit in ’02, so I wasn’t aware of all of the positions there–it was not long after 9/11 and all the non-profit jobs had dried-up and I took what I could get (a $12k/yr pay cut) to get out of the job I thought made me sick (no EDS Dx then). Anyway, it was just a 3-mo contract job w/o benefits. I never knew about the cancer girl (sorry if that sounds offensive–picked that up from Sheep!) until later in the contract when she came in one day. So, she never worked in the office–EVER. She just came by to say hi to people or something. I was so sick and my supervisors knew that and I would work 14 hrs some days and if I were even 30 mins late from coming back from the state prison (how did they calculate this?), they started blowing up my cell (I ran programs with the women’s correctional center that was in a different county (!) and I had to deal with lots of hold-ups getting into the prison due to security and then sit in traffic forever to get back to downtown Seattle–so an all day affair). BS! It was discrimination as I still have no idea how I pulled it off (and went to grad school at night) and slept 30 mins at most for that entire year. The ADA can stuff it in my mind. They may be tough on the bldg. code, but when it comes to employment, there’s a lot of room for improvement for most of us.

  4. Good lord, well they sound pretty terrible. I don’t know about unique, I mean, I don’t think it’s *you* for sure. My last job was awful – I think they must have been cut from the same bolt of cloth as the a-holes you used to work with.

    So far,my current one is much better but you know, that’s not saying much when you use a place like that as comparison, right?

    I think non-malicious intent can still express maliciously. I hope that doesn’t sound too sphinx-y. I think there are a lot of people in non-profit (and add to that hospitals and education) who believe that they are good people doing good, and so it absolves them of any need for self reflection on the bad things they might do, you know, casually and out of selfishness, insecurity, ignorance, and bias.

    We definitely need something better for disability laws. Aside from the timeline for filing an employment complaint being so DAMNED short, my chief problem with the amended ADA is that there is no enforcement except through personal complaint. The ONLY reason I didn’t bring a complaint against my former employer was that I knew with my illness, I would not have the energy to work my new job and to do all the work that would be involved in the complaint process. I often wonder if ADA violation stuff comes up at disability hearings. And if so, whether or not discretion could be given to the judge to make a complaint on the part of the person petitioning for benefits. I bet a lot of companies would find ways to accommodate their employees better if they thought they might get dinged for the cost of paying for disability support for the people they otherwise would drive out of the workforce.

    • You said it! It’s like being a gerbil running in that damn wheel until you just about die and then it’s SSDI city–and the working world is just so glad that you’re gone. Lol. Yes, the non-profit, etc. sector is just sooo empathetic, too. I never even missed one day of work or was sick on the job (a bit zoned out from the pain) after I got on meds (part-time then), so I have no clue! Hope you can make it work…

  5. Delicious dog food! Attending all those social events while starving must be horrible! Bad enough when nOT starving.

  1. Where is the disabled person??? | Sheep in a basket

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