Gadget’s Airstream Chronicles

Well, I’m sort of awake now. Been up for about 30 minutes. Basically, napping throughout the morning. It happens with those middle of the night wakeups. My throat is still an issue, but feels less tight than eariler.

I’ve got to say, with this medical garbage, I am frustrated. I spoke with my physician’s office, and they recomended brining my Entocort back up. Done. But I was flustered with other responses.

I know I’ll need follow ups. But I was not told when the follow up should occur initially. The person who called from the office suggested I find a permanent spot, and a new permanent doctor. This has been my first interaction with them on the medical level since I was diagnosed.

I know, I need to find a more permanent spot soon. But I wonder, “To what end?” Here’s the deal, and what I’ve experienced with docs so far….

• Last year I had high white, red, and eosinophil counts. The answers I got were maybe I run high.
• For months I’d go for more blood tests. Still high. No answers. Still felt horrible
• The pains and symptoms I had were finally chalked up to anxiety. Ignored the actual anomolies in my blood work.
• At each turn, docs asked about anxiety instead of investigating the pain I had.
• Went to counseling for anxiety. Counselor thought there was more to it.
• Gave up on the medical facility I’d been dealing with for months.

Finally I switched medical facilities, and pretty quickly my issue was found. First protonix helped the reflux. Then a CT scan showed the inflamation in my gut. Finally biopsies showed the EE very clearly, and EG was suspected as well.

The big issue was that this whole thing is mostly about unknowns. My gastro doc was pretty upfront stating that very little is known about my condition. Self management was suggested. Drier climates too. Hence part of the reason behind my trip.

It was funny. My allergist asked if the gastro doc was going to track me. The gastro doc asked the same. Bottom line, nobody wants to track a patient that has an unknown and currently incurable condition. They don’t say that, but it’s pretty damned clear to me that was the reasoning behind each wanting the other to track me.
So, I figured that’s that. The wife wanted to cut all ties, the docs weren’t super interested, and after being trapped at home last year feeling horrible I wasn’t going to sit tight and wait any more. Nobody has real answers for me, only management of the issue. All last year I waited on appointments, referrals, etc., and kept feeling horrible. You hit a point when you say, “I know what it is, and so I can deal with it to a degree.”

Last night bums me out. Even when it’s under control, it’s not totaly under control.

Reading the yahoo groups I know others deal with the same issues and worse. Some docs understand and work with patients, others do the shoulder shrug. Even if I find a good place that works for me to live, how do I know the quality of medical care? This morning I asked for referrals, and got none. It’s up to me….In the meantime, today I could have used some more “real” assistance.

So, guess I’m off to read the Yahoo groups more. Several folks have good docs. I need to see where they are. Guess that’s the first order of business.

Oh, and if you’re wondering, yes, after nights like last night I do feel uncomfortable about trying to sleep. Makes a person a little edgy to say the least.

This entry was posted on Thursday, July 13th, 2006 at 4:00 pm 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.