Sunday, June 26, 2011

making plans

When I was 13, after months of testing and seeing more of the inside of hospitals I ever wanted to see in my lifetime, I was diagnosed with IBS (which does not stand for International Breakdancing Society, which would be way more awesome). Even though I was in excruciating pain, my doctor treated the diagnosis as if it was what he first suspected: that I was faking being sick. The only reason he had even consented to any tests in the first place is because my father has Crohns disease, which hasn't proven to be hereditary but is likely to be- my father's father and my father's uncle both have the disease as well. So, since it wasn't the more serious diseases dealing with your digestive system, my doctor decided to not give me any sort of treatment plan aside from "take an advil". Great advice.

When I was in my late teens, early twenties, I had another bad flare up. New doctor, but same school of medicine apparently. I went back to the hospital for a ridiculous series of tests, followed up with a colonoscopy in which I almost died (the nurse let air get into the needle, my heart almost stopped, and my doctor told me it wasn't a big deal...yeah. ) and again, it wasn't Crohns, "just" IBS, so get over yourself and get back to work.

So, for the better part of my life, I've just dealt with the pain and need to always be close to a bathroom. I love road trips but only take them if I know we'll be close to a bathroom of some sort. I won't go camping or anything in the out of doors for longer than an hour and only if I don't eat or drink anything hours before. Even then I've had ridiculously close calls. I never feel good, but some days are better then others.

After we moved to Massachusetts, I had another really bad flare up. Went through all the tests again (all to ensure it wasn't the dreaded Crohns, but at this point in my life if I was going to develop Crohns, it would have shown up by now. Most people are diagnosed by late teens, early twenties, and I have had more tests then anyone needs for that to show up.) but the doctor went one step further and had me tested for Cealiacs. Negative, but at least she started looking beyond Crohns for the source of my pain.

Again, at the end of the testing, she came back with the same answer. IBS- but instead of shunting me out the door, she put me on painkillers and told me to find ways to de-stress and even got me in touch with a clinical study out of one of the medical colleges in Boston. The painkillers didn't work, but a few months later I found out about my wheat allergy. Cutting wheat out of my diet seemed to help- the pain remained but it wasn't as debilitating as it had been.

Cut to last week. Work has been more stressful than usual- I received an unpaid 'promotion' in February, which I'm pretty sure is just my boss's way of seeing how quickly he can get me to lose it daily. The later it is in the week, the earlier I break down. I leave work in tears or shaking in anger most days. My boss fought to create the position (after I indicated I wanted to leave the department and move to working as a product specialist in tech support), and once he got permission to create lead positions, he's done everything he can to work against us (the leads). It's been a frustrating, exhausting couple of months. The only person I could go to for help is in China most of the year now, and is scheduled with all day meetings the rare weeks he's back in the country.

Most nights I don't sleep more than 4 hours a night because my anxiety is out of control. I know all of this, yet I was taken by surprise last week when I was down for the count in crazy amounts of pain- pain so strong I couldn't go to work, and I always go to work. Blizzards, floods, no power, flu, laryngitis, fevers, it doesn't matter. I'm always there.

I had made Thai curry the night before with a mix I found at the store. I normally don't like Thai curry (coconut milk is of the devil) but figured almond milk would be a tasty alternative. The mix ended up being too salty for either of us to eat, so I just ate copious amounts of rice...and was sick the whole night through. I thought it was food poisoning at first- but Anton didn't get sick at all. By 6, when I hadn't slept a wink, I called out, wrapped myself in a heating pad and laid in the fetal position most of the day. Nothing helped- Pepto, Mylanta, ginger...nothing. I went back to work on Friday and by Sunday I was mostly feeling better.

Wednesday came around and I almost left work, the pain had gotten to ridiculous portions again. By Friday, Anton demanded I go to the ER. But I am Midwestern, and pain is no reason for an ER visit, so I consented to go to the Urgent Care instead.

The rotation doctor did a quick exam then literally threw his hands up and went "I don't have a good plan for you." Well, thanks for being honest.

So, he told me to reduce my stress (which at this point would mean never leaving my apartment. I don't think my work will pay me not to come in.) and doubled the dose on my pain killers. After I told him the don't work, upped the frequency I should take them as well. I left, dejected- I've been on these pills for two years and they've never helped, and advise to "de-stress" is unhelpful and annoying.

But, after my first higher dose pill, I promptly fell asleep. I've spent most of the weekend in kind of a limbo- the pain is still there, but most of the edge is off so I can actually move and do things and eat (the pain is usually so bad after eating that eating is, for many other reasons as well, my least favorite things to do). I'm going to make an appointment with my regular doctor on Monday, but I'm not confident if she's going to be able to help. The next step from here is to go on an anti-anxiety pill, but I really hate the idea of being medicated just so I can work.

I'm trying to explore my options. I've looked for other jobs, but there isn't much and I don't want to get stuck in the same cycle I'm in. I could tell my boss I need to step back from the responsibilities, but I don't think that would help- the problem is, even if I take a step down,those responsibilities are still mine AND it's the only hope I have for a raise in the near future. But in two weeks I've missed three days of work because of pain related with IBS and the pain is a result from stress and no amount of pills is going to help me lose the stress.


1 comment:

  1. A dear coworker of mine had to quit work (and she worked from home like me) because of Crohn's and has been basically living at the hospital for two months. So I really, really hope it isn't that. But I wish you had answers!

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