Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Road trip

As soon as school gets out, June 4th, we are headed on a long trip, about 2 weeks. We live in N. Ca. My hubby wants to go back to Wichita Ka. to visit old friends, then we will head north to Des Moines Io. to see my brother. On the way back we want to stop and go through Yellowstone Park. We will be stopping at many of the tourist spots along the way. We will be taking our granddaughters, 15&16, who have never been out of California. I need hints and suggestions how we can do this with me being all crippled up. We can't postpone the trip until I feel better as we have to work with the school schedual and I need to go back and see my brother soon as he is not doing very well. He has had several heart attacks and we just don't know how much time he has left.

I am not looking forward to this trip. I don't travel well, even when I am in good health. I hate public bathrooms. The last time we made this trip, I came down with food poisoning.

How do I pack heating pads, ice pack, a full assortment of meds and all the food and clothes a family of 4 is going to need? We plan on taking an ice chest and BBQ for some of our meals.

definitely a challenge i know i wouldn't be able to do, but i did something uniquely bizarre to my upper back years ago, so that's a special situation.

obviously people will say to take frequent breaks and walk about. if i had to do a trip like that, someone would have to lay me down in the back of a vehicle somewhere, don't know if laying (at least some of the time is an option). when i fly, i take muscle relaxants at just the right time. if i go on a rare long flight, i also take well timed aleve, figuring one once in a while won't hurt me too much.

i'd still pack the heating pad(s), when you stop over in hotels, people's homes, you can plug those in at least.

ice packs more of a challenge, i know. a cooler of ice just doesn't keep them cold enough. if you could take a cooler of dry ice, they'd stay cold enough, but that would be a bit of a pain, and it wouldn't last more than a day or two depending on how much you got, and how well insulated your container, even then, it doesn't last long. so taking my gel ice packs isn't usually a viable option. and those "chemical" cold packs, where you "break" a divider between two chemicals and they get cold, just isn't cold enough in my experience. but, i've found a way of compensating, buy using the following:

one of the most convenient things i've bought and used over the years when i have to travel is the old fashioned "ice bags" that you get at the pharmacy. made of rubber with a metal or now days plastic screw top. i take 1 or 2 large and 1 or 2 small, they're very compact when empty. can fill them with ice, can fill them with hot water, can use them in a variety of ways, in a variety of places. they're probably my favorite travel item.

i also take a couch pillow for lumbar support, a neck pillow for neck support (i have a really comfortable one from brookstone, most are very irritating to me, but the one i have is lovely, i have 2 of them), and a smaller air pillow which is very compact and easy to take when the couch pillow is too bulky.

i also pack my nice thin, soft, very supportive, feather pillow in my suitcase no matter what.

i also pack some of my own foods, so my tummy is never unhappy: psyllium being one of the things just in case.

and i always pack a bathing suit in case there is a hot tub i can use.

i have a list i keep in my suitcase so i don't forget anything, and i pack about a week in advance, and then spend the next week trying to jettison anything i don't absolutely need, usually its clothing that goes.

yes, half my suitcase is clothes and the other half "medical supplies and health devices" these days, i really thought i'd be much older before i traveled like this. but it makes such a difference.

enjoy the trip as much as possible and your time with your family.

Thanks for all the good suggestions. I hadn't thought of the ice bag. I was thinking I would take along a lot of zip-lock bags and a dish towel to wrap them up in. Most motels have ice available and some have small refrigerators. I thought I would take my ice pack just in case. I use it more then I use the heating pad.

I don't think I will be lying down in the car. I will be doing much of the driving. I will take as many pillows as I can fit in the car.
Donna

here's a photo of what i'm talking about, just in case you:

they are so much more convenient than a ziplock baggie would be.



hope you can be comfortable enough to enjoy yourself.

I remember those, we used to have one. I will have to go shopping for one.
Donna

I've been meaning to hunt one of those down... they look so handy! As an emergency measure when travelling long haul on the plane I got a couple of those little dry sacks, that you'd use when kayaking, to put ice in if I needed to. I figured that if they're designed to keep water out, they'd keep it in reasonably well too, esp if the ice was sealed in a bag inside them.
I have heard of chiller boxes that can be plugged into the cigarette lighter in the car to power them. Might be worth seeing if you can find one.
One thing I always carry with me now is hand sanitizer, to use before handling any food. You certainly want to avoid food poisoning...

Good luck!

One thing I will certainly bring is my rice bag. Most motels/hotels have microwaves. I like the feel of a hot rice bag wrapped around my neck. I wonder if I could get fast food place to nuke one for me during the day?
Donna

Avonldy,

I'll get to the minimal advice I have to offer in a second, but first, I'll share with you this small example of my goofiness, which rears its head from time to time (and usually in the most unexpected places).

So, I start reading your post, and everything makes sense at first: You're heading out to Kansas, then Iowa, then going to take a side trip on the way home. But wait: Did she just say "on the way back, they want to stop at Yellowstone"? Um, I'm no geography expert, but I know for sure that there is no map on the planet that will rearrange things so that Yellowstone is on the way BACk to . . . North Carolina. Yep, that's right. I saw your "N. Ca." and just assumed you meant North Carolina, even though I'm pretty sure I've never seen the state abbreviated that way. And, besides, all I had to do was take a quick look under your name and I would have seen that you were from the Sacramento areas. My brain just misfires in the oddest ways sometimes.

Now, as for your trip, afraid I don't have a lot to add simply because I haven't made a really long car trip in a long time, nor have I ever been responsible for helping to keep others entertained while on a trip of that nature. It is definitely a big undertaking, and I can see why you feel so much trepidation when you think about it. I guess all I can say is to map out your itinerary as fully as you can so that you can identify in advance the parts of the second half of the trip that you MOST want to experience. That way, you can try to conserve energy by either skipping some things along the way, or if not skip, experience in limited fashion. I don't think this will keep you from having bad days on the trip, but hopefully it will limit just how bad those days are and will also let you maximize the good times you do have. In anticipation of the trip, I would absolutely recommend calling a family meeting with everyone who will be making the journey with you so you can explain this strategy--or whichever strategy you decide to use--and to let them know that, as much as you'd love to take part in every activity on the trip, you know that just won't be possible. Also make sure they understand that you'll have good days and bad days, and that when you have bad days, you'll really be relying on them to provide you with a little extra help. Also, maybe you want to warn them that if you seem a little crabbier than normal on some days, it probably means you're having a bit of a rough day, even if you haven't admitted it. Make sure that they know you aren't mad at them, you're just not feeling well.

I don't know how much your granddaughters know about your illness, or if they have routinely been around you when you're having a bad day, but it would probably help to take them aside separately and talk to them about how your illness might present a few problems on this trip. After all, they're teenagers, and they view the world through healthy, invincible eyes, so it might take some extra attention to help them understand how you might have some bad days while they are out on the road (and maybe reassure them that, even if you do have bad days, that you love the idea of getting to spend time with them on a road trip like this and that you'll always remember this as a special trip).

Like I said, having never been on a trip like this, I don't know if anything I just said is relevant, but thought I'd take a shot. And, that "lack of relevancy" thing applies double to the parts where I talked about the granddaughters, seeing as I absolutely do NOT have any of those!

The curious thing is, I just might be facing my first long road trip since my AS reached the point it is at how later this summer. I'm in the running to finish in the top 8 in my big poker league, and if I do, I win a spot in a World Series of Poker tourney out in Vegas. Since I haven't flown since my AS became this bad either, I have no idea if I can get on and off an airplane and will be able to sit in the seats they use; I know for sure I'll have to fly first class in order to have enough leg room, but not even sure if that will work. If flying turns out to be out of the question, my mom has said we could drive out there and back, but boy, that idea doesn't do a lot for me either. However, seeing as pretty much my biggest current dream is to play in a WSOP tournament, I'm going to have to bite the bullet and do one or the other if I do manage to win a seat next Friday, so I'm doing my best to wrap my brain around that fact! If I end up driving, I might be coming to you for advice after your trip.

Brad

OMG Brad - you never cease to crack me up.

I was so ready for a good laugh.

I was really cracking up when I read that part about North Carolina. I can see where you would think that. I guess I thought that everyone knew that Ca. meant California.

My granddaughters know all about my problems. My husband and I adopted them when they were babies. I guess I could call them our daughters and be correct. With the difference in our ages, it just seems more natural to call them granddaughters.

The girls have seen me in bad condition both with AS and UC. They know from the past that Prednisone is "the grumpy pills". When I had my knees replaced 4 years ago, they waited on me hand and foot. We have had them in an independent studies program since kindergarten, and most of that has been homeschooling. They are used to being home with us and helping out.

We will try to keep away from the touristy places as much as possible except for Mt. Rushmore and Yellowstone. They will be taking CD players, Ipods, a portable DVD player and our laptop computer so that they will be kept entertained. The laptop will let them stay in touch with their friends while we are gone.

We are lucky to drive a Chevy Impala that is comfortable, compared to most smaller cars, so at least I will have plenty of leg room and a comfortable seat. We know it is important to stop frequently to stretch our legs and walk a bit. I just didn't want to forget anything that might help with the AS. It has been quite a few years since we made this trip.We used to drive back every other year when the in-laws were alive.

I was really wanting to hear about any travel gadgets that people might have come across that they thought helped them.

If(when) you go to Vegas, I think you will be surprised how well they will treat you if you notify the airlines in advanced that you are disabled. Disabled people are boarded first. If you ask, they will meet you at the entrance of the terminal with a wheelchair, this is nice because you don't have to worry about getting across the terminal, finding the right gate and getting where you need to be in time. Ask about leg room when you book your seat.

Thank you for your suggestions.
Donna