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……
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Rich,
You COULDN”T have stayed in New England! As much as we miss you, it has been rainy and humid since you left. You would have spent the time in the hospital!
Lyn is right: move with the weather and seasons. Every state has plants producing pollen at sometime - find when and go when its low. Combine that with the other factors like air pollutants, weather, availibilty of food, hospitals, phone service, etc. That Airstream does offer something a house can’t. Run that HEPA and trust yourself! You have a good handle on things! Enjoy!
You’re into maps… instead of doing biking/hiking maps, create low pollen, low humidity seasonal maps, then sell ‘em. They’d be good for more than EE/EG folks, people with allergies (like me) would be interested too. Could call it the “Allergenic Tourist” instead of the “Accidental Tourist”. I’m only half kidding. - elly
Hi Rich;
I have started following your adventure and would like to offer you a suggestion to try to get better temporary relief from airborne allergens. This would require a little tinkering but should be fairly simple.
Pressurize your whole Airstream with prefiltered air. You will need to pull air into the hepa filter system you already have directly from the out doors. Then run the intake blower all the time, not just when you are in the camper. If you can, supply the filtered air into your bedroom first. Then if you come in on a particularly pollen heavy day, remove your outdoor clothing by the door and go into the bedroom for pollen free air.
A trial system can be built from corrugated cardboard using hot melt glue , expending minimal cost. You can also use flexible 6″ dryer duct. Air can be taken in through a small window and ducted to the filter unit. A small fan can be put into the window to help bring in the air.
I have done this kind of thing in my own house. When my furnace runs, it draws air from the outdoors directly into the filter system first, then it goes into the general house atmosphere. This pressurizes the inside of the house and reduces intake of unfiltered air.
If you wish help to pursue this, email me a picture and the make and model of your HEPA system, and a picture of the place where you would want to bring in outdoor air.
PS all I have is dialup at 56K.
Al