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  • Tips on travel?

    Hi all, thanks in advance for any tips! Well this weekend upcoming my family is going to be visiting my siblings in my old hometown in Illinois, which is 6 hours away from my house now by car. I haven't made that trip since being diagnosed with IC, and I'm in a flare as of late, any tips about car rides? When I was little, my parents had to bring a little potty with us for me when we went on trips, I think I'd look pretty ridiculous in the backseat of their suburban being 20 years old and peeing in a child's potty! lmao Although, they did offer to get one, lol!
    Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

  • #2
    I just returned from an auto trip that was nine hours each way. We went one way on Saturday, and returned the following Thursday. Hints: I took along my IC pillow to sit on and we took bottled spring water along (enough for the full time). Frequent stops at rest areas. I was asked before every rest area if I needed to stop. Take along pain medications. I was in a flare before we started and it continued for the entire week --- is still with me. Those thermal heat pads that heat when opened are good. I had a warm puppy laying across my lap, which really helped!

    I took along some Travel Johns, but didn't need any. We visited family and they all know I need rest rooms when I need them --- so every place we went they told me where I could find one.

    And most important --- have a good time!

    Hugs,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      When we travel by car. I take an ice chest along. In it I put my own breakstone cottage cheese, add to the cooler cans of juice that I can drink as needed, cans of pears as needed, home prepared custard in small 1/2 cup pyrex dishes that I put in zip locks. Also I take a rubber maid or ziplock containers of pre-cooked turkey patties and/or hamburger patties. My own homemade breads go too and frequently a container of leaf lettuce. Always I have a canister of sugar cookies or snickerdoodle for hubby and me. Uually I take fresh pears and baby carrots.

      You can replenish as needed. Larger cities have bakeries where you can get more goodies. Independent bakeries are very cooperative.

      I warm my patties in convenience stores where my husband buys his lunches. I can peel my fresh fruit anywhere-don't forget a good knife because plastic is no substitute. Many hotels have microwaves where I can warm bread, etc. I have sometimes found that a motel will offer to bring in a small refrig when they see the ice chest and I tell them I have health problems--I'm also diabetic. The doctor's letter does wonders. It has even given us extended check out times on those mornings when I am dragging. The doctor rewrites it each year.

      Also I take bottled water from home, and when I run out I buy Evian.

      At night we usually eat out, and I can get a plain steak, grilled chopped sirloin pattie, or sometimes fish or chicken. Many times plain steamed veggies are available upon request as is a baked potato or plain rice.

      I stay away from salad bars, because they add preservatives to the lettuce so that it stays fresh.

      Even if I am at a relative's house or close friend's house, I find that I frequently have to supplement. Then, too, so many people eat out now days that I could wind up hungry. No one is insulted that I bring some of my own food; they seem relieved.

      Like Donna I take a cushion to sit on, and we make frequently bathroom stops. I always carry toliet paper with me, towelettes, the emergency bathroom card, and my doctor's emergency letter.

      If I get caught in a fast food situation, we go to Burger King and I order the flame broiled hamburger on a plain bun and usually eat one side of the bun. Subway lettuce, turkey, and American cheese on a salad is not too bad if you get caught in a pinch.

      My survival kit includes a dark sheet, so that in emergencies, on the side of the road, both car doors can be opened and my husband can hold the sheet to block the view. I don't like the portable john, but carry it just in case.

      Also we take a pillow to sleep on and an egg crate with us that can be placed on the back seat or in the back of the Durango with both seats down.

      I take all my usual meds, including pyridium, pain, and spasm meds, and whatever I may need to help me sleep. Also I carry a bladder antibiotic just in case, immodium, and nausea medication (because my bladder can sometimes cause me to get nauseated during a long car ride. Don't forget a portable heating pad (pack an extension cord for the one you use in a motel room). I also take a T.E.N.S. unit.

      We try to travel no more than six hours, but I can last as long as seven plus.

      Recently, at a convenience store, hubby and I found a smaller size of Breyers natural vanilla ice cream that we split and pigged out on.

      On longer trips we are considering getting a small bar-b-que grill, etc. and buying and broiling our own steaks, etc.

      I have a check list of items to take on trips. Keep all prescriptions in original bottles in case you are stopped by the police.

      I make sure that my jeans or shorts have elastic waists and that the elastic has a lot of give to it. I do take pads along just in case I have a day when I think I may be having a problem
      Liz

      Comment


      • #4
        Those are good suggestions Liz. I just read your post. You have done alot of traveling and expereinced alot. I know that it can be done. Hang in there. There's hope. I love custard. Hmm maybe I will hint to dAd to make it. He made me scrambled eggs this morning and I wanted them so bad. He said he had no eggs in and then he found 2 of them. they were delicous.
        Hang in there , There is hope.
        There is hope. Prayer works.

        Love, Debbie

        Comment


        • #5
          Thanks for all the tips--
          I was supposed to leave two days ago, but couldn't. Oh well. Custard sounds good. Is that what you just posted Deb? I think so. I'd kill for a chocolate shake right now. Funny, this turned from travel to food!! lmao Take care all!
          Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

          Comment


          • #6
            Oh Jess, I am so sorry that you couldn't go. I feel it for you. I hope you feel better. I am lucky that my family lives around me and don't have to travel that far to see them. yes custard does sound good. comfort food.{{{{{{{{{{Jess}}}}}}}}}}}} grouphug grouphug grouphug angel angel angel
            Hang in there , There is hope.
            There is hope. Prayer works.

            Love, Debbie

            Comment


            • #7
              i am sorry your trip was cancelled...

              nevermind,,, there is always the next time. :p

              ps liz... thanks for your great tips!!! grouphug

              Comment


              • #8
                Thanks for the warm posts. They made me smile. You guys give me the support here that I don't get in the outside world. I mean, my family understood and all, but I was kind of disappointed. Oh well. I snuggled up on the couch with a blanket, heating pad, pillow, and Chicken Soup for the Mother/Daughter soul, and all was well again. I also came on here frequently. You're probably wondering why I had a blanket and heating pad in such hot heat. Well, it rained here all weekend so it was nice and cool, thank God!!! Luckily I am able to tolerate Georgia Mud Fudge Blizzards from Dairy Queen...my husband kept me supplied this weekend while he was at work. But now my sweet tooth is bugging me again...I think I'll go in search for something sweet, or send him out to get custard!! lmao Thanks girls, I love you!
                Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

                Comment


                • #9
                  My ultimate travel experience is going on a cruise. For two summers in a row we have cruised on Royal Caribbean. My food list is faxed ahead of time by my travel agent to the cruise line and to the ship's executive chef. Also, I hand carry it and present it to the head waiter our first night aboard--just before we sit down for formal dining.

                  The key is to eat in the formal dining room. Everyone will try to accommodate you. Of course, you need to tip well at the end of the cruise.

                  We cruised Alaska's Inside Passage last year, and the Hawaiian Islands this year. We got a room with a balcony both years--just in case I got sick, I wouldn't missed anything. It really helped for Alaska, but wasn't needed for Hawaii. There is not as much to see in Hawaii while you are cruising. Book early and you can get excellent prices.

                  I am also diabetic, and we were able to work around that and an IC diet.
                  Liz

                  Comment


                  • #10
                    A key to a smoother ride: We do not put the heavy mud tires on the Durango, as it makes my ride too rough and difficult. We use Goodyear Wrangler RT/S. My husband can still used the 4 X 4 in the woods and not get stuck.

                    My most comfortable ride has been in Ford's Crown Vic, but that car is getting a little too old to take on long trips.

                    I have found that a heavier vehicle makes road trips easier. I can tell you that you don't want to ride in a Mustang. My son has one, and I rode in it for 90 miles and back and thought for days that I would die.
                    Liz

                    Comment


                    • #11
                      My favorite way to travel is in our motor home. I can sit up front if I wish, but if I want to rest, the bed is right there for me --- and best of all, my own traveling bathroom and plenty of IC friendly food in the fridge! The only time we go by auto is to visit our kids --- the gas mileage on the RV is horrible and we can't really justify it if we only have a day's drive and will stay with family.

                      As soon as I get out of my current flare (which probably means a hydro) I want to head for the beach.

                      ::::::sigh::::::
                      Donna
                      Stay safe


                      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                      Have you checked the ICN Shop?
                      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                      Patient Help: http://www.ic-network.com/patientlinks.html

                      Sub-types https://www.ic-network.com/five-pote...markably-well/

                      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                      [3MG]

                      Anyone who says something is foolproof hasn't met a determined fool

                      Comment


                      • #12
                        Donna, You have gone a while since your last hydro, haven't you. Sorry that IC caught up with you. I use them like you do. Good luck. I can always tell when I need another one.
                        Liz

                        Comment


                        • #13
                          Liz: Yes --- this time I've gone 14 months. I think the monthly DMSO has helped me go longer. I do have occasional flares, but they usually go away within a few days. This one has been going more than two weeks. I am supposed to call my uro today and we'll schedule another hydro.

                          And after that, if I am accepted, I will be going into the RTX trials instead of returning to DMSO. I'm a little nervous, but maybe this will be the answer for lots of us.

                          Hugs,
                          Donna
                          Stay safe


                          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                          Have you checked the ICN Shop?
                          Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                          Patient Help: http://www.ic-network.com/patientlinks.html

                          Sub-types https://www.ic-network.com/five-pote...markably-well/

                          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                          I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                          [3MG]

                          Anyone who says something is foolproof hasn't met a determined fool

                          Comment


                          • #14
                            Donna--
                            How often do you go in for a hydro? Is it under an anthestetic? I'm just wondering because we're trying to find a treatment good for me because I've been having severe, disabling pain lately.

                            Thanks,
                            Jess
                            Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

                            Comment


                            • #15
                              I don't know about Donna, but I have a hydro every 6 to 8 months, and it is for pain relief. I use a general anesthesia.
                              Liz

                              Comment

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