Gadget’s Airstream Chronicles

The blog has been “lacking” the last couple of days.  From time to time it is nice to step away from the computer.

I haven’t been feeling my best the past couple of days, but figured out the offending agent.  Last weekend I did a little shopping, restocked supplies, and got a new brand of vitamin C.  Sitting here in the Airstream the other night I noticed something on the label of the bottle from across the room.  Contains Milk.

Ah ha!  That explains the really upset stomach, and the old feelings of a brick in my gut.  It didn’t take long to affect me, and has been taking days to clear out the uncomfortable old feelings.  But I’m certain I have my explanation.  Plus, now that it’s warming up here there’s a little more in the air again, and I’m noticing it.  Spring has sprung, and with luck the stuff floating in the air will dissapate shortly.

I’ve also been lying low the past few days doing some new web work, and putting together a large tutorial on podcasting with Wordpress.  It will be ready for the public soon.  Best of all, the piece is informative and easy to follow for anyone starting out podcasting with Wordpress.

Finally, my buddy Bob has departed Arizona.  That’s a real downer.  He’s an interesting guy, and he’s always ready to go do something.  Fortunately I think Andy has the climbing bug, so we’ll see if he and I can get a regular routine of a few days a week.  The last climb Bob and I did left me sore, feeling as though I’d torn something in my right arm, and exhausted.  I’d like to climb it clean by the time he returns to Prescott.

This evening Rich, Eleanor, & Emma will be pulling in.  Spoke with Rich several hours ago, and they’re near Tempe.  Apparently they’re going to the Ikea there today to get some ideas.  Ah, home ownership’s demands already begin to weigh on the Airstream Life Tour of America!  Be sure to pop by his site and leave a comment to the effect that he’s now a weekender once more…… 

Today was a medical day. It was a longer medical day than I thought it would be!

This morning we headed in to Plant City for another scan of my gut. We would be my old friend Heidi and I. Heidi was kind enough to come along. I wanted to make sure if I got naseous that I had someone availble to drive me back. Thanks Heidi (she’s up in the pool right now).

Had to swallow barium this morning. 2 different types. One super thick, one not so thick. The first one was pretty interesting. I asked the fellow who told me when to drink it if they’d purposefully added beach sand into it because we’re in Florida. He got a chuckle. I got to drink more. A fruit smoothie it isn’t.
The thick kind actually dries out pretty quickly. Some dripped off the cup onto the scanning table, and dried fast. Reminded me of the stuff you put on the seams of drywall. Guess I was drinking some type of spackle hybrid. Probably still clinging to my insides right this very moment. Hopefully it will cover over the spots where pictures were once hung.

My testing went a little long. There for more than 3 hours of scanning. Eeek. Glad I can sit still when I have to. Apparently the stuff was passing through me a little slower than normal. Took 3 scans over an hour to determine that the barium still hadn’t gotten to a certain point. Guess it was a long trip.

In the end I’m uncertain about what’s up inside me. I heard two doctors conferring (not techs, these were doctors and were introduced as such). Then a third person came in and re-did the same scans the first two did. What I over heard in their little “confab” makes me know that there is something still cooking where I’ve had pain for over a year and a half.

I wonder why nobody in New Hampshire bothered to do this testing?

There were also a few comments that things in my gut seemed to not be exactly where the should be. I was asked more than 3 times if I was sure I never had abdominal surgery when I was younger. 3 different people asked. I gave the same answer every time…it’s a head scratcher for sure.

I’ve got a sneaking suspicion that down the road my initial belief last year, some type of infection, is the cause today. Just a “gut” instinct on my part, nothing more.

Tonight I haven’t sat pondering long on this. Although the smell of the barium drink is still in my nostrils, and the taste still in my throat, the excitement for the day is over.

Now I’ve got the rest of the week “free”. Sort of. Some more web work just dropped into my lap. And I was considering moving the trailer for a few days to the beach. I don’t have appointments again until next week.

Honestly, the photos I’ve been getting here are fantastic, but just imagine what they could be ocean front!

I bet everyone reading along is thrilled that I don’t video the medical events!  You know, they capture all this stuff digitally now.  Got digital shots from my colonoscopy & endoscopy sitting right across the table from me…..  :D  :D  Maybe the next GAC podcast should be my favorite medical tests! 

Well, off to let the internal spackle dry a little further.

Haven’t posted in a few days, and I haven’t been checking out the area.  Whoops.  Started getting a cold the other day, and really came on strong yesterday.  Cramping everywhere.

That’s one thing I haven’t quite worked out with this travel.  Dealing with the sick issues when on the road.  Last week I’d been working on finding a new physician to help with the EE &  EG.  But in general, I’m not sure how “full-timers” find medical assistance beyond emergency rooms.

The cold is still with me this morning.  So probably no fun photos today.  Can’t even do the standard “home remedy” of chicken soup, as one of the allergy issues I have is chicken.  Go figure. 

Yesterday we had thunder storms you wouldn’t believe.  And severe wind to boot!  The Airstream did well through all of it.  Definitely a sturdy little trailer.

For the past few days I’ve been feeling a great deal of improvement.  It’s been nice feeling as though I’m making bigger steps forward.  This morning I felt a little odd though.  Congested, red eyes, the standard stuff.  Tingling arms and legs again too, but nothing too bad.  I might have been outside too much yesterday.  Who knows.  The AC and HEPA were on all day though (no open windows, I’ve learned).

This afternoon I talked with Eleanor, and she asked me how I was doing.  See, she’s got some pretty tough allergies, and today she hasn’t been feeling so well.  Nice to have someone around who can be a “thermometer”.

Guess I’m having a bit of a time pinning down where I should take up residence.  It seems a place might be good for a while, but once changes occur (pollen, pollution, etc) the region might not be as good.  Idaho has been a prospect in my mind, but a small change in the wind has affected me today.  Not encouraging.

No real help

Last week I’d noted a suggestion that my physician’s assistant had relayed.  Basically, pick a spot, and new physician.  Try working with it there.  Honestly, that’s not going to change the situation.

See, this afternoon I was reading through some e-mails from a EE / EG group I read.  One patient asked about doing an elimination diet (wiping out all food and starting with something simple).  Their doctor suggested it, but gave no recommendations at all.  The dietician they were referred to had no ideas as they knew nothing about the disease.  How much rice, how many times a day, how many weeks / months?  No suggestions, no help.  The only real resource is a handful of folks on the net who have the disease, and one researcher in Ohio.

The concept of staying put and doing lots of blood work again doesn’t appeal to me.  Last year I had multiple blood drawings per month for many months, was a physical wreck, and found myself unable to even get around.  I got no answers.  When the diagnosis finally came down I was told there was little to do for me, and I should experiment with food and environment.  I’d like to ask, if you’re not getting help, and not improving somewhere, and find your physicians shrugging their shoulders, what should you do?  The worst is getting a suggestion from a physician with no instructions.  Do an elimination diet……ok, tell me how guys.

HES?

As I’ve been learning about EE & EG I’ve also read about HES (hyper eosinophillic syndrome).  I’ve been concerned about it, as my blood work for an entire year showed elevated counts.  That’s common with HES.  It’s not so common with EE & EG.  HES affects more than throat and gut, it can affect anything in you.  It might explain the dizzy spells, tingling arms, etc.

I will be stopping in somewhere longer term shortly (several weeks).  At that time I’ll be finding a physician, and getting another round of blood work.  Then I’ll be looking to see an immunologist.  See, that’s who I should see about the blood work, and that’s who I was NEVER referred to in all my interactions with my physicians.  But guess what, not being a doctor I never knew I needed to see one.  You’d think that would be their recommendation given how little the gastro and allergist docs knew about the situation, and the fact neither wanted to track my case, and asked that the other track it instead.

Just got a strong suspicion that when I do the follow up with a new doc, and see an immunologist I’m going to get the HES answer.  Actually, more than a feeling.  I’ve read almost everything there is to read on eosinophillic issues, and given all of last years tests I’ve got a clear indication.

Dealing with something that just is….

One great friend who has been following along with the blog has also been extremely helpful.  She and her husband are both researchers, and she thinks like a researcher.  She’s followed along, noted things that affect me, and had helpful ideas.  Much more useful than any of the doctors I’ve dealt with in the past year.  More thought than, “You’ll need to experiment with it.”

Her recent suggestion was to doctor hop and shop.  Find someone who is actually engaged.  It’s harder to do today than you think.  Her other thought was that moving with the weather and growing seasons will probably be something I need to do until the issue is under further control, if it gets under control.  Thanks for all the advice Lyn. 

In the end, I’ll still have to deal with the roller coaster.  In a given week I can feel like I’m regaining strength, only to find it drop out from under me several days later.  Another good friend and I have an expression which usually makes us laugh.  “It is what it is.”  Just have to take it as it comes.

Where I’m at now

I often ponder what other choices I could have made several months ago.  I could have stayed in New England.  There I would have continued seeing physicians who offered no further help, only continued blood work and shoulder shrugs.  I actually stuck around for quite some time waiting on a follow up.  My hope was they’d offer further treatment options.  Instead I was told to experiment, and I was asked if the other guy wanted to track me as each doctor didn’t want to track the case.  Too funny.  What a waste of time and hope.

I could just pick a spot, settle down, and hope that the wind doesn’t change.  And if I just pick the spot, who’s to say that the medical providers would offer much more?  There are very few who know much about the disease at all.  I’ve gathered that from the stories of other patients I’ve been communicating with.

Maybe the final option is to pick a spot, make myself a bubble, and hide away.  I just don’t know.

In the end, I’m at least pushing myself to do what I can.  It’s a hell of a lot better than last year where I couldn’t drive due to dizziness and discomfort.  Plus I was ignored and dismissed for months on end.  Better to be out here trying.  There’s the conclusion I reached.  I wonder what other people would do……

So, a few days of keeping the Airstream locked up like a bubble has helped.  Go figure.  I’m pretty certain it was the air and open windows that were the causal factor in the disaster that took place the other night.

I was happy to get to talk to my family friend Lyn last night.  She’s got the mind of a researcher (probably because she was one), and she noted to me that several of my bad incidents over the past few months track with open windows and higher pollen counts.  Her take on it, my upper GI issues always seem to track with outdoor variables, not necessarily the food.  On reflection and review of the blog, she’s pretty much on the mark.

Additionally, she suggested I have a great opportunity, unlike my physician’s assistant who called back the other day.  Since I’m not rooted I can doctor hop.  I need to compile a full history (got most of it with me) and hit the research hospitals near universities.  Find someone with the mind of a researcher, not a McDonalds worker (the McDonalds worker is my added thought).

Today I’ll be doing some errands and finishing up the town things I needed to do.  Then I’ll be heading south.  While I’m here I will see the Tetons at minimum.  Always wanted to, so I should take the opportunity while it’s right in front of me.  But I’ll need to find another full hookup park.  See, now that it has become clear to me that outdoor environmental variables impact me strongly, I really do need to treat the Airstream like a bubble.  That means I need AC power for my Airconditioner and Hepa filter.  I don’t know what I’d do without my Hepa some days.

Also, I wanted to thank everyone for the concern and well wishes after the other night.  Got a bunch of comments here and a ton of e-mails too.  Thanks all.  I will get this worked out.  If you really want to help, check out the Cured Foundation’s Web Site. If you think I have had it rough sometimes, you should hear some of the stories of others with this disease.  I’m grateful that I’m functional enough to do this trip right now, and have no room to complain compared to other folks who don’t eat real food at all.  Be sure to check out the About Us section of Cured as well.

By the way, to address a few e-mails I’ve gotten….Bottom line, you should have seen me last year.  What’s happened on this trip seems trivial in comparison to how I was living last year.  It isn’t trivial of course, but I had bouts that lasted for weeks last year, and found myself unable to drive for months.  I am gaing ground with this.  But you’ve gotta keep one thing in mind, right now I’m looking at the prospect of having this thing for life as there’s no solution to it at present, only ways to manage it, and the management comes at a cost too.

So thanks for the well wishes, and don’t worry.  I just need to be mindful of what I can and can’t do (not used to doing that).  Windows open are a negative for the moment.  I’m looking forward to boondocking again some day, or even better, doing a long hike again.  Obviously I’ve got some more to do before those things will happen.

Off to downtown Bozeman now.  Need a new air pump for my tires.  Those battery powered ones are JUNK (died yesterday).  Then tomorrow I think I’ll set course for Jackson WY.  Gotta meet up with the Luhr family and get Eleanor her glasses (picked up yesterday for her).

So, I spent most of yesterday napping on and off.  Probably due to the fact that the night before sleep wasn’t my friend.  But last night I got a great night’s sleep!  Hooray!

What was different.  Well, I barely ate anything at all yesterday.  As I’ve said before, fasting helps.  Doesn’t help with hunger, but ah well.  Also, last night I slept on the couch.  The couch arms are higher, and I stacked my pillows on them, so slept more upright.  That helped plenty.  Finally, had a ton of Mylanta before bed. 

Thanks for all the responses.  I’ve gotten some interesting ideas from everybody.  One really good friend to my mom and I, Lyn (hi Lyn) has some great ideas.  I need to rethink how I’m approaching this.  Rather than just worrying about being static, I have an opportunity to “Dr. Hop”.  Find places with specialists, and go to each one.  Pick more research oriented spots.  Put together an introductory case history to present. And I have found other doctors who are more helpful toward EE&EG patients thanks to the Yahoo group.

Finally, Lyn also suggested the tapering might be too quick on the Entocort.  Yup, I think I figured that out too.  :)  But she pointed out something that hadn’t come to mind.  It took over a year to go through the melt down, and the fix might take as long too.  Very true.  I guess part of my wanting to taper off the medication is pretty simple.  I don’t want to be sick, and I’m impatient with it at times.  Much more interested in just being fully me again, rather than the current 75% me.  Where’d that other 25% go anyway.

So, now that I’m a little rested, and the gut has settled to a dull roar, I’m planning on looking around Bozeman today.  I was very excited to get here the other day, and I’m not going to waste my time hiding out in my silver bubble.  Plus I still have plenty of to-do’s (gotta get the oil changed).

I’ll get some photos around town.  I was also thinking of a ride up to Hyalite Canyon.  That was such a fantastic stop last time I was here, so I wanted to see it again.

Off to have some rice cakes for the morning.  Mmmmm.  Breakfast of champions, right?

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 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.

Odd title for sure. Not certain that it’s really fun but we’ll go with it. By the way, I’m a little bored now with sitting around getting the cold under wraps. So, I’ve had some time to tinker around.

It struck me I really haven’t said a ton on my diet. Just highlights here and there. So I’m fixing that now.

With the Eosiniophillic issues my diet has had to change dramatically. When you sit down and figure out how many products have milk, eggs, chicken, barley, etc (the list is too long), the initial reaction you might have is simple. I’m screwed. That was my first reaction the other month. But I’ve learned, and I’m still learning.

Now I’m the odd shopper who is blocking the aisle as I read all the ingredients in a food product. I’ve found stuff that was almost me, but then it had milk. Or it had eggs. Or better yet, a product that did work for me, and the manufacturer made it new and improved and put eggs in it. Got really sick the other week because of exactly that. A product I trusted became new and improved, I ate it, and felt horrible quickly after. Read the label, and it now had eggs. Great.

Anyhow, what do I eat now? Stuff you couldn’t have forced me to eat willingly before. Some of the favorites, and new favorites (Soy Dream fake Ice cream, go figure) are pictured below.

So, what’s all of this stuff, and is it any good? It’s good enough that I’ve been keeping a supply on hand for all those towns that have none of it!

• Soy Dream Soy Milk: I tried a ton of soy milk products. They were horrible, every one. A friend suggested Rice Dream, and it was pretty darned good. But Rice Dream seemed a little watery to me. Then when I was picking up Rice Dream one day I saw the Soy Dream package, and the “New Great Taste”. I gave it a whirl, and was super surprised to find that it didn’t make me feel like I wasted my money. More important, I didn’t want to spit it out instantly. If that isn’t a product endorsement I don’t know what is.

• Sans Gluten Batonnets: Just found these again today. I’ve been looking for them since New England. $5 per box, but worth it. I can’t have my old sesame sticks that I liked. They make me sick. But these gluten free ones rock! What are they made with? Potato flour, corn starch and rice starch. Go figure, eh? Oh, and they’re actually yummy. So I restocked today.

• Rice Veggie Twists and Gluten Free Pasta: Ran out of this stuff too. But found more today. These are both rice noodles. Been missing Mac & Cheese. Can’t have the mac or the cheese. But I can have these with soy cheese (found a few good soy cheeses too).

• Mori-Nu Silken Tofu: Found this one thanks to Eleanor (thanks). Doesn’t need to be cooled until opened. That saves me space. The firm version can be fried, then added in with noodles. Decent. Still, it’s like a white block of paste. But with the right seasonings, you can pretend it’s more.

• Soy Dream fake ice cream: Well, it’s not my moose tracks ice cream, but I tried it tonight. Once again, no urge to spit it out. Pretty decent. I’m beginning to like the Rice Dream / Soy Dream company.

• Cream of Rice: My mem used to give me this as a kid. Rice is on my ok list, so I’m trying to get more in. A little sugar added and the stuff is good. Unlike other hot breakfast cerals, couldn’t find any flavored packs.

All of those are just a few of the items on my shopping list now. Other things are:

• Rice Bread: Not so great, but I miss sandwiches.
• Potato Chips: Lays just made their sour cream and onion chips with real sour cream, so that’s out now. Plain ones and BBQ are still fair game.
• Jelly Bellies: Glad I’ve got a candy that still works. No chocolate for me. Been a super long time.
• TVP: Texturized Vegetable Protein. This is what I use to make my odd burritos with. Good stuff.
• Boca Burger: Same deal as the TVP. Got a little wheat in it too, but I can tolerate some wheat I’ve found now that most of the other stuff has been cleared out. Boca’s fake chicken patties have been “improved” and now have eggs in them, so I can’t touch them (last time I did I got really sick).
• Corn Tortillas: Very versatile.
• Corn Chips: Tasty.
• Bean Dip: Never been a fan, but I’m learning.
• Soy Cheese: Gotta be careful buying this stuff. Many brands still have milk product in them. I’ve found a few companies that are good like Vegan Gourmet. No milk stuff in it. Many soy cheeses say vegan on them, but then I find milk stuff in them. Made that mistake several times now not reading close enough.

In general for me, Corn, Rice, Soy, Beef, and Potatoes are still way in. As I’ve experimented I’ve found many things are way out. Got my list from the allergist, but I’d like to see improvement at some point down the road. Today there isn’t any. The few experiments have all ended very badly. Just ask my friend Tom about my Arby’s experience with him. Man, I miss Arby’s.

It seems the Eosinophillic disorders affect each of us in similar ways, and in very different ways. Some people have more foods in fair play, some have less. I’ve read about people who don’t eat food any longer. Instead they get nutrition via tube, IV, etc. Others have very few food issues, and a small number of things to avoid. Broad range of issues.

For people without the issues, looking to try some of this alternate food, the items I listed above are pretty good. I guess I’d say I endorse those products. The fact that a picky eater like me is actually buying the stuff again says a lot. Of course, I don’t have much choice, right?

A final neat item. The expiration dates on many of these things are amazing. My Soy Dream does not need to be cooled until opened, and most of the containers are good through 07′. Great for a guy with little space in the fridge. Same deal with many of the tofu items. Expirations way out there!

Well, there’s a different angle today on the blog. Shows what being stuck in all day going through Puffs Plus tissues will do for you.

Yesterday we decided to stay put one more day.  We really didn’t get to see the area as we were too busy with work stuff.  This morning I’m super glad we’re staying put.

Last night I hit the pillows around 10.  By midnight I was up, feeling really wrong.  I haven’t felt this way since I was out at the Great Sand Dunes.  Sound asleep, and then sitting up like a shot.  I think it was some heavy reflux.  I knew I was feeling bad too because I was so hot again.  Ick.

Frankly, I’m not certain how the EE & EG hit other folks, but I know how it hits me.  I’ve read through the Yahoo Groups on it, and the list of effects is long, strange, and not fun.  But my symptoms are always the same.  Last night my throat was super tight, and the feeling of someone pushing on my chest wouldn’t stop.

What do you do in that case?  Well, I’m a few thousand miles from family now.  Rich and Eleanor are right next door though.  It’s when I feel that rotten that I feel the most alone.  Even if someone sits with me while I ride out the physical feelings, there’s not much they can do (although their presence is a comfort).

So, I got up at midnight, and put on some cartoons.  Wide awake for hours, but so exhausted.  Every time I tried to lie back the reflux feeling would come on full.  Oh, and when this happens the cell phone is RIGHT next to me.

Why did this happen?  I’m not sure.  I tried one new food yesterday.  Plantains with another fruit sauce.  That was the only change.  There is a good bit of pollen here, and it’s a little more humid now.  Is that enough to set me off?  Not sure, all I know is that something set me off good.  Kind of makes me not want to try any new food at all, and hide next to the Hepa.  But I’m not going to do that…. 

Not a fun blog post for sure.  Think I’m going to lie back for the morning, and be restful.  Maybe I can get some more sleep.  Here’s hoping I feel a little more rested.  I’d like to look around the area some more.