Sorry I haven't updated much recently. As I've discussed in my previous few posts, I have not been doing well recently. My GI system is so messed up right now. And that's putting it lightly. I finally found out today the final results of one of the tests I had called a Sitz marker test. For this test, I had to take a pill that contains a bunch of very small rings that can be seen by xray. I had a xray 5 days after taking the pill. I should've had another xray a few days after that, and another one a few days after that. However, my GI doctor screwed up. Soooo... instead, I ended up having a xray 5 days after taking the pill and again 19 days after taking the pill. However, it still showed my doctor what she was looking for: dysmotility. There are 24 rings in the pill that looks like this...
I don't know exactly how many I had in my system on day five. I talked to someone in radiology (because of the screw up) and she counted while I was on the phone. She ended up saying... "a lot." I still had a couple of those rings in my system on day 19. So, in other words, it takes me almost a month to digest my food.
I didn't really need the tests to tell me that my GI system isn't moving. Especially after today. I have had an AWFUL day. I woke up this morning actually feeling okay. Then, I just knew it was going to be a good day after I had a bowel movement. (I won't include a picture for this one.) Keep in mind, that doesn't happen very often.
Well, I was wrong. I ate breakfast and it all went downhill from there. About 30 min. after eating some cheerios and taking my morning pills, I became very nauseous. In addition to that, I had a killer headache. Both continued getting worse throughout the day. At around lunchtime I couldn't take the pain anymore (the pain that was bringing me to tears). My nausea had let up a little bit so I ate a couple of crackers with a little peanut butter and took some pain pills and a migraine pill. About an hour later they violently came back up again. That really made my headache better! (please note that I am fluent in sarcasm)
So, I have not drank or ate much of anything today. Which is soooo not good for people with mito and/or dysautonomia. My energy level is, of course, about null right now. I have fallen asleep/taken a nap about 4 or 5 times today.
I talked to the nurse at my GI docs office. That was productive, as always. (there's that sarcasm again) I don't have the energy to explain how stupid they are, so maybe I'll go into it later.
I will soon be pushing for IV fluids. On a "normal" day right now, I'm not getting enough fluids. My new, new normal that is... since my GI issues got worse. If I drink too much water, or any other liquid, I get very nauseous. Vomiting is actually NOT fun, so I don't drink very much, or eat very much so I don't get to that point. Amazingly enough, I'm not losing any weight. I wish I at least had that benefit of hardly eating. Then again, I was eating okay a month or two ago and I'm probably still digesting that food. Plus, I don't move much, especially on the days that I'm not eating or drinking much.
So, now you're up to date. And now you know why I haven't been posting much recently or called you or returned your call or emailed you, etc. I will probably be using the blog to keep everyone up to date for awhile. So, keep checking back if you want to know what's going on.
I hope everyone else is doing well. Sending much love your way!
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