Gadget’s Airstream Chronicles

This is one of those posts you might want to skip. I’m not writing about pretty views or fun drives. Last night I had a severe issue due to my EE, and I’m going to share what happened, and what’s still happening now.

Before I get into what’s going on, I want to share how great I’ve done with this. After finding out what has really been happening to me for a year, and getting the divorce decision from my soon to be ex, I did not curl up in a ball. Instead, I tried something new, this trip. I’m proud of how I’ve handled this, so don’t take the following entry as being down. It’s just what’s happening right now.

Yesterday I was feeling pretty good. The town of Bozeman is nice, and where I’m camping is pleasant enough. Generally I was pretty relaxed, and just catching up on work. I think I made 2 mistakes yesterday.

• Snacked on Beef Jerk too late (8:30). Need to stop eating by 6:00.
• Left the windows in the trailer wide open as the temperature was so pleasant. The HEPA remained off.

Sleep came easily. With all the travel, I’ve been tired. I was actually having an interesting dream too. But the dream turned strange. I was having beer in the dream (something I can’t have) and it was making my stomach unsettled. I started getting sick. That’s when I sat up in bed. Wish I’d had beer, that would explain how I’m feeling!

At 1:30 I sat up feeling like I was gagging on something, and had acid in my throat. I haven’t had an issue this bad since before I found out about the EE. Fact is, I don’t think I’ve got something lodged in my throat, it’s just inflamation. But along with the choking feeling, the severe acid reflux was creeping up. I know, gross.

I couldn’t stop the urge to “get sick” at first. These are the moments when it would be nice to have a porcelain toilet instead of a plastic one to hang on to. The porcelain is at least cool. Bottom line, I hate vomiting.

I paced the trailer for more than an hour. Lying down doesn’t help with reflux. Standing up or sitting up is your best bet. Combined with the reflux though the choking sensation didn’t help. It’s downright terrifying.

There are a few readers who’ve told me to call anytime. Don’t be upset I didn’t call last night all. I was too scared to want to even dial. The only number at the ready was 911.

Why didn’t I call 911? Because I know this is an episode that will pass. If the constriction in my throat continued to tighten I would have called. Otherwise I would have ridden in an ambulance lying down, and that would have made me feel worse.

While pacing I cranked the hepa on high, closed all the windows, and downed a ton of Mylanta. On my bad days I think I carry the Mylanta corporation’s financial future! Anyone want to run to the store and get me some more?

As the worst of the acid passed I sat back down in bed. Didn’t lie down. Picked out a King of the Hill DVD and sat up and watched it. Somewhere between 3:30 and 4:00 I fell back to sleep sitting up. 4:30 I woke up and turned off the DVD and computer.

I re-awoke at 6:30 Mountain Time. Less acid, very burpy, and I still feel like something is stuck in my throat. I’ve called my physician for advice, and right now I’m waiting for the next call back. His nurse suggested the ER if the constriction continues.

Being on the road is not good from the medical assistance perspective. Referrals don’t work (finding out this morning). I need to find a spot to remain static for a while, and to investigate my issues further. That’s a bottom line that’s been drilled home for today.

So, I’m waiting on a call back from my physician. I’m thinking my Entocort dosage needs to go back up. And I’m thinking that the windows stay CLOSED from now on, and the Hepa remain on. Won’t work well for boondocking scenarios, but that’s the way it is.  I don’t want to live on egg shells, but there are some things I need to do apparently.
As the morning progresses I’ll make my decisions about a physician today. ER’s are usually pretty useless. And the odds of finding a physician who knows much about EE & EG are pretty low. I’m hoping my physician has some good suggestions.

For all that’s gone on today, I still don’t regret hitting the road. I had two choices this spring. Curl up in a ball and fall apart over the divorce and illness, or do something. Just getting a regular job back in New England wouldn’t work. The climate doesn’t help with my issues, so I’d just be dealing with more physical discomfort. Plus staying there would keep me to close to my ex. I didn’t want the divorce, and miss home still.  Remaining there would have made healing harder. With that in mind I headed out, I’m seeing the world, and coming up with ideas for a new home base.  Plus I’ve met a ton of wonderful people along the way!
After last night, I need to pick a new home base soon, and find a new physician to help me get more solutions to this crap.

If I’m feeling better later I’ll post more, but I’m lying low for the day.  Maybe I’ll edit some video later, but I think that will be today’s biggest task.  Oh yeah, no food today, I need to let my gut settle.

This entry was posted on Thursday, July 13th, 2006 at 9:02 am and is filed under Eosinophillic Esophogitis.You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.