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Every Vacation I flare up

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  • Every Vacation I flare up

    Hello my name is Carla Lewis and I was diagnosed with I.C about 9 months ago. The Dr. thinks I have had the disease since i was 3 years old b/c that is when the problems started. I am 25 now. I just read your husbands articles about traveling with a I.C patient. I just got back from a 7 day vacation to Texas and we live in Ohio. I had a flare up the whole time I was there. My family there argues a lot and that made me very stressed so I know that caused some of it but it started before I got there. I think it was from riding in the car for so long of course My husband would stop for me to go to the restroom as soon as he found a rest stop but sometime it wasnt quick enough. Everytime we go on vacation I get a Urinary Tract infection plus a flare up in my bladder. I try to stay on my diet especially if I am on vacation but it is so hard. Not only am I not suppose to have the no no I.C foods but I am also allergic to a lot of them too like fruit and soybean and such so it is a double whammy when I have somthing I shouldn't. My husband is so good about stopping me from having foods I shouldnt b/c sometimes I just say I give up and want somthing i know I shouldnt but he stops me thank god or I would probably be in flair up all the time. I have been home for 2 days now and just now I am feeling a little better no more U.T.I infection but still have bladder pains and pressure. I know I am rambeling on but my husband was laid off so now we dont have insurance and I just need some advice to keep me well until we get insurance again.I am taking Elmiron but I will be running out and wont be able to afford to buy it with out insurance. Does anyone take it and have you ever just went off of it? Any side affects? Before I took the road trip it was about 2 months since I had a flair up. Those were the best 2 months of my life. I just want to feel like that again. thanks for listening. Like you know it is hard to talk to someone who doesnt have the disease: they just have no way of understanding what it really feels like.
    Keep Well
    Carla

  • #2
    Hi Carla [img]biggrin.gif[/img]
    Vacations make me flare both before the vacation, during and after because all's I do is worry about the things that I just HAVE to get done. I haven't figured out the trick yet as to how not to worry and make myself sick. I have to give you alot of credit for driving that long in the car.
    We are going to Hawaii the end of January and it's a 9 1/2 hour flight and I am scared to death. I'm going to ask my uro for antibiotics 'just in case' I get sick there. I am already a nervous wreck from worrying about it.
    You will find lots of people here to talk to about your disease. You never have to feel alone with IC again. This is a wonderful place with wonderful caring people who will be with you thru the bad AND the good [img]wink.gif[/img]
    You are lucky to have such a supportive husband. Mine just blew up a few minutes ago about how hard it is to live with me and I know he's right. I often wonder if the shoe where on the other foot if I would beable to handle all of his health problems like he does mine.....the man is a saint but every once in awhile he needs to blow up....it's good for him. And, it's my job to let him talk and not let what he says rub me the wrong way.
    Don't think that I've welcomed you to the ICN so I will now.....WELCOME CARLA [img]biggrin.gif[/img]

    tons of hugs~
    teri
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

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    • #3
      Hi Teri,

      I just came across your post and thought I would respond. I know what you are talking about concerning a trip to Hawaii. We were there this past March. First off, it took about an hour to get through Customs (we live in northern Canada) and then due to mechanical problems had a six-hour wait in the "holding pen" at the airport. Finally, we got on the plane and had an eight to nine hour plane ride. By the time we arrived in Maui I was ready for the hospital. The flight alone is enough to cause excruciating pain for me with the vibration and sitting for such a long time but the additional 7 to 8 hours of waiting, standing, walking, etc. at the airport was enough to make me just want to go home and cancel the trip! Hopefully, this won't happen to you and you will have a wonderful trip. Where are you going in Hawaii?

      You mentioned on one of your posts about a pain medication you are taking and I am wondering if you would mind privately sharing it with me. My husband and I are "contemplating" another trip this winter as it is so cold and snowy here for six months that we need a break to maintain our sanity. But I am not sure if I am up to it after our last experience. If you don't mind sharing some further drug info with me, please e-mail me at: [email protected] Thanks very much for your help.

      HAPPY NEW YEAR,

      Louise

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      • #4
        Carla,
        I just wanted to respond and tell you that I know how you feel with the stress flares. I think you probably started flaring because you knew what kind of stress you were going into. Also I am the same way with long car rides.. I usually always get a flare..
        I'm not sure where you would find out about it, but I thought there was somewhere on the internet that you could go and apply to get elmiron either free, or at a reduced cost..
        You may post that question under Elmiron or the first post on the boards ( information board).
        Maybe someone has some information for you.I wish I could help, but I don't remember the info..... It would sure be worth a try...
        My thoughts and prayers are with you.
        Hugs,
        rickeysnannie
        Sheila's Charming Place

        Comment


        • #5
          Even if your husband was laid off you should be able to keep your insurance through COBRA. You would have to pay for it, but if at all possible you should hang onto it.

          To find out about drug assistance programs, go to the pull-down menu at the top of this page for the link.

          I've developed some coping mechanisms to help make vacations simpler. First of all, I have a checklist that I do every time we go anywhere for more than a day --- the list has everything from toothbrushes to the poop scoop for our doggie. That way when we are ready to leave I know I haven't forgotten anything. We usually travel in our motor home --- it's old and not very big, but I have my very own bathroom on the road --- and if I get tired or uncomfortable, I can lay down on a bed.

          When we go in our van, we take along a porta-pot just in case --- usually don't use it, but it makes me feel more relaxed just knowing it's there. I've considered getting a female urinal for emergencies, but haven't done so yet.

          I always take emergency medications along --- also just in case.

          Sending healing thoughts,
          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

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          • #6
            And just who the heck REALLY thinks vacations are
            relaxing! Do you suppose we more stressed than those lucky folks without health issues just by virtue of having to worry about where the next bathroom is and "will I get sick again this time?" Donna has great suggestions. After finally making the vacation-stressed out-sick connection, I have discovered the PERFECT vacation....I stay at home an putter in my gardens, walk in the woods, tend my chickens, read and RELAX. I am fortunate however in that this is also hubby's idea of a great vacation as well.

            [img]smile.gif[/img] [img]smile.gif[/img]
            GardenLady

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            • #7
              I am the opposite because when hubby and I go on vacation---we leave the kids at home!! It is stress free and I do so much better when I am on vacation. Ofcourse I pack all the stuff --just in case. Last year I was in terrible pain before I went and I packed all the stuff to do my treatments ect.--but I did so good I didn't even have to do a treatment!! Even got to have sex--now that is amazing!! We go to the beach and I even talked with my Dr about why ny IC did so good while I was gone!! Was it because we went to the beach and there was NO ALLERGENS???? Dr didn't think so but when I got back--BAM!! I just can 't wait to go this year!!!!!
              hugs
              shel

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              • #8
                I have a tip for those who go into swimming pools on vacation. Get some pool test strips from a pool store. Test the the pool before going in. If the chlorine is too weak, or too strong, stay out! I once got a terrible UTI from a pool in Jamaica. The water was cloudy, but I didn't realize it was way under chlorinated until I got the infection. This started a long IC flare and ruined the vacation. Now, I would never go into a pool until I test it myself.

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                • #9
                  My tips for a good vacation are: Always drink bottled water, wear my ten's unit while on flight or driving in car, Rest a lot, take pain meds and take all my other meds. correctly and on time. Just my tips hope this helps anyone. I plan a trip this next week and I am so looking forward to it. I do worry like everyone else, will I get sick. but hopefully not. My husband is so good to take care of me when I do. The ones that are traveling by plane why not get a wheelchair that's what I always have to do and then I don't overdo. Hugs

                  redstonebef

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