Modified barium swallow and other fun

Had my swallow eval on Friday. Everything looks good in my throat. Everything at every consistency went down well. But I did cough during the test and even though the fluoroscopy only shows head and neck, we could see that the food was pretty high up in my esophagus for a while. So between a slow esophagus and what the speech therapist believes is an over stimulated vagus nerve, we may have figured out why I have the sensation that I'm choking and coughing all the time. I still have to maintain the diet I'm on now though because I am still at higher risk for aspiration. Since my gut moves slowly, leaving my esophagus full longer, that makes it easier for food to get into my lungs. And with the reflux, anything that does come back up is of course potentially harmful. So I am to stick with the bland, low acid, soft, small meals that I've been doing. Which is pretty much all I can tolerate at this point anyway.

The speech therapist suggested I have a full barium swallow to see what things look like all the way down. So I imagine that will be next on the list. (I had one years ago, but things have changed since then)

And Dr. H was planning on sending the results to Dr. M to look over regardless of what it looked like. And now since it looks like it does in fact have neurological involvement, that's a good thing. Saves time. We were talking about a possible neuromuscular test of some kind depending on what the results showed. I'm guessing I'll be having that as well sometime.

But that's that for now.

I got a tattoo on Friday as well. I had been wanting to get another one for so long and I decided that I finally had it in my budget. I'm so glad I did it. The time spent doing it was great and the work is beautiful. I absolutely love it. It's already in the peeling phase of healing, so I've been lotioning it up today, but the bruising looks a little better (not quite as dead as last night :P ) and in a couple weeks I should be able to go in for a touch up, heal again and then have a nice new finished tattoo just in time for warmer weather. And such a pretty tattoo for warm weather too. Really makes me feel like I belong somewhere tropical every time I see it.

I've decided recently I'm going to move to Florida when I finish my degree, so I'll fit right in with my tropical tattoo ;P

The cold weather has always gotten me down, but more and more lately. And when me and Lisa were in Florida a couple weeks ago, it was like a sign. The fact that it was so warm there in the middle of winter, my body just loved that. That's exactly what I need. When I'm warmer, I feel better. So I'm going to finish nursing school just as fast as I can, then I'm going to pick up and head to Florida. Where there's sun and water all the time. Two things I need much more of.

And the crazy thing is that mom is on board with this, so I know it's gotta be right.

So now I'm in the process of picking schools and filling out forms and trying to get in as fast as I can and get finished and just be done. I've decided I will work my ass off and do whatever it takes just as long as I can get done as soon as possible and get out on my own again. I think moving back in with dad is holding me back in some respects. And that's not his fault, it just kinda happened. I don't feel like this is my place. I need my place back.

And even though Florida is so far from home, I really think that I could find my place there. I think I would be so happy and comfortable there.

Well, I'm just about getting tired and I have work tomorrow, so I guess I might as well start getting around for bed soon. Good night all.

I suck at updates, we get that, right?

So, me and my GI (and neuro, through my GI) are working on things for my gut. He's a bit reluctant still to do the J-tube, but he's not knocking it off the list. He just wants to make sure we've figured everything else out before punching a hole in my gut. I respect that.

I was on the phone a lot today with his medical assistant trying to set up appointments. We're still working that out because she misinterpreted his notes and thought he wanted a different test. That's okay, we got it straight. She's getting the right procedure ordered for me now.

In the meantime, I'm going to try to start keeping a food journal again along with monitoring my weight. Past experience has taught me that I can't do this religiously, but I can get a good idea.

Like today for instance, (which is very similar to any other day for me as of late) I had approximately 500 calories, including the calories I drank. Between the choking, feeling full early, nausea, and all the other gut stuff, I just can't eat enough. I have been drinking better this week though. I have been drinking water finally...something I hadn't really done since my hospital stay (it wasn't tasting right, and when I was filling up so fast, I wanted my intake to count toward my caloric intake). But I'm drinking better this week. I managed to make it well over a liter without a problem. That felt good.

So, hopefully we can get the swallow eval underway soon. Depending on the results of that, a neuromuscular eval is next on the list. I don't know what's after that. But I'm hoping a discussion about J-tubes follows soon after. Because I would really like to get my tube and get to pumping my body full of fluids and nutrition with less fight. I want to gain weight again (I'm down to 113 right now, which is down a few from the steady 118 I had been holding, and 118 is down from the 125 I was at 2 years ago...I haven't seen that number in a long time).

Only time will tell. I'm still hanging in there though.

And still waiting on my skin biopsy for EDS. It's a good thing I'm not in a hurry. Sheesh. I know that the biopsy may tell me nothing, but I still wish it would be done and over with already.

Okay, my puppy is getting all kinds of bonkers and I'm stoned from my Klonopin and Lyrica bedtime tag team so I'm going to let the spaz out to pee then we're heading to bed (whether he likes it or not, because I have to be up at 5).

Night all!