Friday, July 20, 2012

Update-looking things

I was starting to feel pretty tired over the weekend, which, you know, I have EDS and various supporting cast, so not a big deal. Monday I was really dragging and was sure that I was going to crash hard by the weekend (but the weekend was mine for the taking, so it was fine). All I had to do was make it to the weekend. But I've had a busy month and another busy week ahead. By midday, I'd talked myself out of the weekend and just decided to let it happen. I canceled my PT for Monday, and called off work for Tuesday. I had a GI appointment early afternoon and then I could go to bed for as long as I needed.
I took a pain pill to help aid deeper sleep and help prevent pain that comes from too much bed rest. And I felt soooo much better by Tuesday morning when I got up, but still opted to spend a couple more hours in bed while I had the opportunity.

Felt marvelous! Got up and cleaned the kitchen and thought I'd tackle some produce that I'd purchased over the weekend (I usually just spend time washing and cutting up everything so that I can just pull out containers and go). And again, still feeling so great considering I'd been on my feet without shoes or braces for an hour.

I was making a salad while Dad made his supper, sipping juice, munching on yummy cold veggies, and all of a sudden the room spun and I felt very nauseated. Dad was cracking an ice cube tray so I asked him to pass me one (thinking the cold would help calm things down, usually works pretty well). But by the time he'd passed me the ice, I'd decided I had to throw up. I went upstairs and by the time I got there, I was feeling very dizzy and confused and disoriented and had tunnel vision and just felt horrible!

The nausea was getting worse by the second and it was making my stomach hurt. I sat on my bath chair in front of the toilet so I would hit the target and because I was so dizzy I couldn't stand. By then, I had mostly sweat through my shirt and was starting to drip on the floor.

I tried to gag myself to throw up because my stomach hurt so bad from the intense nausea. No luck. I was trying to calm everything down by doing some deep breathing. Then I leaned forward and rested my forehead on the toilet because I was shaking so hard I couldn't hold myself up, and my body knew enough to want my head between my knees (glad with all the brain fog, at least stuff like that sticks...head between knees to ease wasn't cognitive, just habit). The cold felt good but I felt like I was spiraling out of control of things quickly and felt SOOO scared - I knew I was in trouble. I remember thinking I needed Dad to call 911 because something was very wrong. Then I passed out. It was only for a few seconds, and then symptoms started going away pretty quickly.

I was able to breathe through the nausea, the dizzy feeling and confusion were letting up, the sweating had stopped (but I was SOAKED). I was able to sit upright again, but still felt really funky. I called my dad (gotta love technology - cell phone in my pocket, called Dad downstairs) and had him come upstairs before I got up. I also had him bring my blood pressure cuff to me because I didn't want to try to stand and wind up on the floor. My blood pressure was low. 97/65. Not particularly dangerous. But ever since my ablation in February, I've not experienced any blood pressure changes at all. It runs slightly higher than it ever has in my life and is always in a very tight range, regardless of what I'm doing. So the fact that it had dropped so much made me think that it was probably even lower before that.

This whole episode took place in about 5 minutes. So if my blood pressure had dropped, it did so very quickly. I don't know if a fast drop caused the passing out or if the passing out led to low pressure, but I know the two had to be related.

I started feeling pretty good quickly after that. Even went back to the kitchen for my salad after sipping water for 20 minutes.

I called my doc the next day, but found out she was out of town (for the next 2 weeks). They said I could see one of the other GPs in the office, but I elected not to. I've been seeing the same doctor for a year and a half and we still haven't covered all the crazy EDS bases. It's a lot to go over in a 10 minute appointment. Especially when I have a funky body that the docs don't know a lot about (not that they're incompetent, just that it's difficult to actually find a doc well versed in EDS). So I called the cardiologist who did my ablation procedure. He told me to come into the office and he'd put a monitor on me.

Good deal, that's what I was hoping for. I didn't actually see the doctor, his medical assistant hooked up the monitor and I made an appointment to see him in a couple weeks. While I don't want for anything to be wrong, if there is, I'd like for it to show up while I still have this itchy heart monitor on so we can deal with it sooner.

And now, I'm going to go take off the dreaded itch machine for a few minutes and let my skin breathe before I stick new electrodes on again.

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.


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.


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.


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::