Sunday, July 15, 2012

Random bendy updates

I'm to the point now where I don't like my job. At all. Just going in there knowing that I'm going to be in pain and making myself feel like crap makes me want to quit.
But I need the insurance. It's the only option I have for insurance right now. And I need what little money I'm making there. So I keep going. And can't stand it.

I don't know what else I would actually do. I'm not qualified for anything else that would require less torture to my body. All I've ever done is nursing and fast food. And I can't afford to return to school - I'm not getting my bills paid as it is. I feel like I'm stuck in this horrible loop.

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PT has been going well. My upper back doesn't really hurt anymore. But I'm still having pain from my ribs sliding around on my spine a bit. And my left shoulder is just my left shoulder: pretty useless, always in spasm, constantly bothering me.

But I did have a wicked not-fun first the other night. I was having a lot of pain under/behind my shoulder blade while I was driving home from work, and by the time I got off the highway, I couldn't take in a deep breath. I had completely dislocated a rib. It was really high up under my arm, pressing inward on my lung. It felt awful. I was too tired to go to the ER and didn't trust them to take care of the rib without messing something up (I trust my doctors who I see regularly and they know me and my EDS better...I don't trust ER doctors to provide the same level of care because they often know little to nothing about EDS, and little about me. And one ER doc has already driven the point home by sending me away 4 times in 2 years, twice in a week, for a heart rhythm that was potentially very dangerous and needed surgery before it got worse. It was likely from EDS and every time I suggested my EDS as a cause for the problem, he brushed it off. He never took anything about EDS into account. So I request that he never see me again because I can't trust him to properly care for me.). So I took my evening meds (which includes Ativan), plus a muscle relaxer, got my arm up on a pillow so I could breathe a bit better, and eventually passed out from the medication and sleep deprivation. It was back in place by morning and felt so much better.

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I have my followup with the new gastro doc on Monday. I'm hoping this will continue moving in the right direction. He put me on omeprazole when I was there last, which I've never had luck with before (acid reducers usually do very little because a lot of my reflux is neutral in pH, so the acid blockers don't help that). But I feel like I've had some kind of improvement from them this time. I feel like maybe I'm having less chest pain at night. But this morning I still felt like barfing and had half my stomach in my throat. I'm not sure if it's helping enough to justify the cost (it's $20/month, which seems like nothing until you have other meds too, and doc appointments, and everything else). But I'll stick with it for a bit longer. I am hoping we can talk more about doing a tube placement as well. I would really like to be able to do fluids in a way that's actually helpful, because drinking isn't getting enough in me and makes me sick. I just need a better way to stay feeling well.

I also see the pain management doc this week for the first time. I'm really looking forward to this and hoping that whether he's heard of EDS or not, he can work with me on solutions. He's an anesthesiologist, so hopefully he will be able to understand when I tell him that EDS and anesthesia typically don't go well together (granted, I've not had a ton of it in my life - I know that I can't take Versed, and locals (novocaine/lidocaine) make me feel like crap because they jack with my heart and I feel like I'm going to shake out of my seat, but propofol works appropriately, so hopefully that will lend some kind of knowledge as to how we need to start - and I'm not actually looking to take propofol, I just know that it works, so there's gotta be something for pain that has a similar action). I just really really need something for pain relief. I'm getting to the point where I just don't want to do anything anymore because I'm always in pain and it seems like my only options are to deal with it or be drugged out of my mind and useless anyway. I'm convinced that there's something more I can be doing for myself to make life more about the fun and enjoyment and less about the constant pain and worry.

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Well, that was a bit more depressing than I planned to be. I'm just in a funk right now. Don't have enough support here, can't afford to move home where I know more people, the one person I'd love to see right now lives too far away, and again, money and pain are trying to rule over everything.

Today is going to be another lazy mindless day though. I've got a book here that I can finish before lunch. Have a stack of others in my room. And might even do a little writing if my back is feeling up for the challenge (I always hunch over when I write, can't seem to break the habit, which is part of why I don't write much anymore).

Happy Sunday everyone. My Bently boy and I are going to take it nice and easy today. Hope you all do the same :) ::zebra hugs and spoons::

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