Hi, Lene,
I am going to keep this post as a reference. Unfortunately, I haven't travelled in a long time. First it was 9/11. I just didn't want to get on a plane and go through all the hassle. I have never felt well during and after plane flights, even before I was sick. Now, just riding in a car for more than thirty minutes is a challenge, but one day............
Thanks for the great post!
V
We all need dreams, Lene. I share this one with you. Right now my foremost dream is just to be able to get up most days without feeling so sick and having so much pain. I am ready to go to this new Rheumatologist and try what she thinks will work. I am hopeful because of this site and everything I have learned. If it were not for Health Central, I know I would be in a depressed state of mind. Because of you and others I do have my hope, and my dreams. Maybe one day we will both be able to travel. I want to go to someplace warm by the ocean. Wouldn't that be great? It could happen, Lene..........
Peace to you, my friend,
V
Hi V
Yes indeed, we all need dreams. My dream for you is getting the right rheumie@! what a difference it makes having the right primary and rheumie. I do now have both that are supportive of my well being, but it didn't start that way. My old primary didn't think I needed a rheumie or prednisone, or anything strong enough so I could walk. You are not alone is getting to the right place, and my heart goes out to you.
Travel in bits; dreams first, a few hours away, then chancing a bit more, bits by bits. me too 
. Oh, and I've lived on the coast for 30 years and it's seldom warm enough NOT to wear a sweater..... lol
Laurie
Hi, Laurie,
My husband is going to a special dinner tomorrow night, and I was suppoed to go, but I am afraid to go. If I travel in a car more than 30 minutes, I set off a flare. The dinner is an hour away and so that would mean two hours in the car after working all day. I told him to go on and enjoy the evening w/some of our other friends and acquaintances. He is a dear, sweet husband. He told me he didn't want to go if I needed him. I told him I would be fine, and I will, but I hope it isn't always this way. I want to go places with my husband.
I am tapering on my last round of prednisone, and I am starting to get worried. Actually, I am pretty scared. What usually happens is I go on for two weeks w/increasing pain until it gets so bad I can't stand it. Then I call and get another medrol pack. Sigh. I hope I get in to see that new rheumy soon.
V
Hi V
I'm also weaning down on prednisone. I'm down to 4mg/day, for another 2 weeks, then I'll drop to 3mg for a month, etc. I afraid, too, of then the last of it goes - will I end up in too much pain? or be able to walk? or just be so mean I'm homicidal@! with friends helping, you and I weill both win victoriously over prednisone. Miracle drug that it is - still, getting off of it is a son of a b.......!@
Laurie
Hi Lene
This is so perfectly timed for me. Next week is my first trip since I was diagnosed in Dec 09. I haven't even stayed overnight at my friends an hour up the coast, and that confuses them terribly. I'm only going about 4-5 hours away, on a bus tour and staying in a nice hotel in the mountains. We'll be walking thru a high desert museum that's quite famous and other museums, and a small town that's set up cowboy style. I'm afraid of the stress, and keeping up. I'll carry a small (book)back pack and keep my meds with me, and carry my cane wether or not it's needed. But I'm still challenging myself to do this; not back out. I've stayed very very close to home all this time.
Oh, I hunted around a bit and can't find where to re'subscribe to your printouts. techy problems....
Laurie
Oregon Coast
have a great time! There's always some stress with travelling, but just remember that it's good stress. Adventures are essential!
in terms of resubscribing... go to my profile (click on my name upon this comment) been out on the right-hand side of your monitor, you'll see a list of my posts. At the top of that, there is a line that either says "don't notify me, etc." or "notify me when there are new posts." If it says "notify me", click on it until it says "don't notify". if it's as "don't notify me" please let me know. It means that you should be subscribed but there's a hiccup somewhere. Can you also please click on it to see if it changes when you do? Hope it'll work for you.
I use to travel more and all your tips are right on! Flying has been the most challenging and I haven't flown (yet) since the new scanners. I read somewhere that bringing antibacterial wipes to wipe down the armrests, tray area, etc. is also suppose to help. Apparently these areas have been infested with germs. I am in no way a germaphobic but when one is doing the autoimmune lowering meds...better safe then sorry.
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Thanks Lene for this information. I find it very timely, as I was just thinking about how I might orchestrate travel and the subsequent ideas that come with that today. I was also thinking about how I'm likely to be changing -- or more likely adding -- medications that will require more planning involved for travel. Your thoughts have given me important things to consider. I hope to be up to it this summer.
Thanks again!
Great advice and tips- I do all of the above when I take off on my trips. It does add to the planning, but knowing that it makes travel possible- all kinds of travel, makes it worth it, and thus far (knock on wood), mine has always gone off without a hitch!
Great advice! I have had to wear a mask on a plane before, as I traveled a few days after a hospitalization several years ago. No one talked to me on the plane. I could tell that people were wary of me, when in fact, it is I who was wary of them.
I used to travel all the time, but that was before 9/11 and was never concerned and/or challenged about my medication. It all looks very complicated now, but one of the things I learned is that as long as you do your research and preparations before you go, you shouldn't have any problems.
Glad this was helpful!
Sara - glad to know that the theory actually works in practice!
Leslie - I can just imagine the looks!it doesn't sound very pleasant, but ya gotta do what ya gotta do, right?