I had thought my last day of work was Thursday (which I was low-censused on, so I didn't even work). Little did I know, I was on the receiving end of....not enough information. I got called Saturday morning saying I was being low censused again. Interesting since I didn't think I worked there anymore. So I made a couple phone calls trying to figure it out and I was told that my severance wasn't starting until next week. Fabulous. Glad someone told me that. I was told it was going to start last week, then this week, now next week. They told me they could put me on the list to be low censused again for my Sunday shift since it seemed obvious I didn't want the shift so much (mostly I'm just confused and I don't like that so much, that and I was dizzy all day Saturday, which is also not fun). So I wake up early and call to see what my status is. Lo and behold, I've been removed from the schedule, I don't work there anymore. *eyeroll* Yeah.....I don't know either.
But I'll be calling my supervisor tomorrow to figure it all out.
What else? Well, I've been super dizzy and light headed all weekend. It's been incredibly obnoxious and I can't seem to remedy it. I broke down and put on my thigh-high TEDs today and laid down with my feet up for a while. Didn't help a great deal, but it gave me a little relief. I really hope tomorrow will be a different story because I'm sick of it.
And for an update/change of pace: I'm changing my diet. As with anybody with a chronic illness (or ten), there's a lot of research involved in figuring out what the heck is really wrong with your body and how to fix it. Since my docs refuse to go for the J-tube idea, no matter how much I insist I actually am sick, and my neurologist basically told me there was nothing else that could be done for me since there was no cause for my problem, I had to do some more researching to see if there was something else I could come up with.
Lots and lots of research has led me to gastroparesis more than once. One of the most prevalent problems with gastroparesis is food coming back out nearly the same way it went in (whether that's through the standard exit or back up the way it went in). That seems to be about the only symptom that I don't have. The only thing I can think of to explain that (cover your eyes now if you really don't want to know, that's all the warning you get) is that I'm so constipated that food has to take it's time going through my digestive tract and therefore gets a little more time to digest. And I NEVER throw up because my body has a serious defense mechanism against it. When I vomit, because my esophagus is so sluggish (and because the food is undigested and very viscous) that I stop breathing while I vomit. Even if it only takes under 30 seconds before I get a break, that's a long time not to get to take a breath when you're already choking. So it takes a WHOLE LOT to make me throw up. Last time it happened was when I was in the hospital and was getting way too many meds...my body knew that something was wrong and that it had to correct the situation (and I am thankful for that), but that was a good time to call it quits. And I had nightmares about that for a couple weeks after that.
Aside from lacking those two key symptoms, everything else fits. Granted, my symptoms fit a lot of things. But we've tried treating a lot of things. So let's give this one a shot, shall we?
I'm following guidelines for diet and nutrition commonly followed by people with gastroparesis, tailored to my own needs and tolerances. I'll be sticking to the low-fat, low-insoluble fiber diet, also restricting my dairy intake as well. I'm also going to be pureeing or grinding my foods to make them easier to digest. I'll be in control of what goes into my body and monitoring it closely. Foods will be things that I make in my kitchen myself (with the exception of some canned fruits, because those are rather important on this diet, though I will be cooking and canning/pureeing some of those as well).
The plan I've arranged has 3 meals and 3 snacks per day. Most of it is pureed, mechanical soft, or naturally broken down/easy to digest. I'm making plenty of meals and snacks in big batches and freezing them in portions that I can take out and use easily. In the beginning, my meals will be planned out, with a few options for alternatives in case my stomach disagrees.
I'm really looking forward to trying this and seeing how it does. If nothing else, it's just worth the try. And I'm hoping it'll give me more information to feed back to my doctors. Because I'm sick of all of this. I want to feel better. I need to feel better.
But my doctors aren't feeling as hopeful about it as I am. So here's me spreading my wings and flying on my own.
I've also decided that I'm going off my Topamax. It's not doing enough, or anything at all, anymore. It's toxic, and so hard on my body. And here's the kicker, some of the side effects are things that could be affecting my gut and weight. And with the Botox on board, I think I stand a chance of going off of it. I know the titration rate, I know the signs and symptoms of bad things to look for, and I know what to do if I feel things are getting worse. All of that is good considering I didn't exactly get my doc's okay to stop the drug. But I didn't see her saying yes given her stance on western medicine and the fact that I had just spent half an hour arguing with her about a J-tube. I had every intention of asking her, it just didn't happen after all that. So I'm doing it on my own, and if there are any changes, I will call her. If not, I'll update her (and brace myself) when I go in for my Botox appointment at the end of the month.
I talked to my mom about everything going on lately and my last doctor's appointment. She suggested I gathered up my files and notes from my doctors and have them sent to my old family doc to look over. Even though he hasn't cared for me since I got sick, he still knows me. And he would know the difference of what my healthy state is and what sick looks like for me. That's something I can't convince my doctors on very well right now, that I actually am sick and am fighting every day for two minutes of solace. That I never feel good and can't be active like I used to. That I just don't have me anymore.
She also said that if I whenever I went back to the doctor, she would go with me to talk to the doctor and interject some of her own thoughts. That helps. It sucks not living close to her anymore because she was always there anytime I got sick. Don't have that anymore and it's made things a lot harder.
But, that doesn't mean I'm not going to kick ass and give it my all to keep trying to get better.
For tonight, that means getting some sleep, because it is that time.
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