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  • IC is Bad on the Family

    Hi..I'm fairly new here and suprised there are not more posts on "IC Moms". I have 2 girls..12 and 5 yrs old and one hubby of 22 yrs. I have suffered with disabling pain for 15+ yrs and had a hyst in 99. Pain came back and I had a BSO w/ exploraory for cancer 8mths ago. No cancer thankfully but very soon after the surgery I started with bladder woes. I was diagnosed 2 weeks ago w/IC. I am devestated and feel like I will never be able to do anything with my kids again other than what I do at home. I am a stay home mom. I was so looking forward to geting my life back..taking some trips w/the kids and living life again. Now this mess All my kids see is me in pain and unable to do anything much. It bothers me greatly. When I am flairing, I can hardly do the house work and I am so irritable and short tempered. Sorry to rattle on..Can anyone relate? Flowerchild
    I'm Perfectly Imperfect and Praying for Remission

  • #2
    When I have my flared up days I certainly relate. I am too distracted and uncomfortable to really be "present" for my kids and I feel very guilty about it. I try to think of activities we can do while I am laying down or resting. Reading books, drawing, cards, etc. That helps some. It is hard, but hopefully you'll get relief soon and will be able to do all those things you planned on.
    Kim

    Diagnosed August 2001

    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

    I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

    *****************************

    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

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    • #3
      I'm a stay-at-home mom also. I month back when the weather was nice a couple days in a row, I thought I'd take my one year old to the park. Well we had a great time but I had to pee!! There is restrooms right there but when I went they were closed for the winter due to vandalism.
      Right then I thought if those hoodlims had IC they wouldn't deface public restrooms!!!!
      Anyway you're not alone we all have good days and bad days. I'm sure our kids will think we're boring from time to time. But they will still love us. I truly hope you feel better and get to do a few fun things with them!!!!
      Jaime kissing
      Tons of support,
      Jaime

      IC angel helping families in need for the holidays. [email protected]

      Comment


      • #4
        You know, it's amazing how the kids adapt to my pain. And yours are older than mine. Em is 10 and Justin will be 5 soon. I've heard my older tell my younger that he has to go play in his room because mommy's bladder hurts. Justin will lay in bed with me and kiss me. He's my baby. You will get better. You will get worse. You'll also have quality time with the girls. Please don't beat yourself up over this. Ok, it's hard to tell someone this. I'm the queen of beating myself up. But you will become more resourceful in being the good Mom. It doesn't matter that you don't make the class meetings, or you don't volunteer for the Senior Banquet. You can be a good Mom anyway. Please feel free to mail me if & KIsses, Michelle in KC (Sorry about the typing, I have a cat that is walking over my hands as I am typing) bunny

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        • #5
          I used to worry about what my having IC was doing to my children. They are all adults now and what I found is that they grew up to be wonderful, caring adults --- I think more so because they grew up with a mom who couldn't always do things with them and made many trips to the hospital. I have a daughter-in-law who has migraines and she has commented to me many times how wonderful my son is to her when she is in pain.

          One thing I used to do with my kids was to tell them when I was having a bad day --- and they came through for me.

          Sending an encouraging hug,
          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


          • #6
            Hi, Until 2 weeks ago I was also a stay at home Mum and had been for 14 yrs., partly b/c of IC and partly b/c it is illegal in NZ to leave a children under the age of 14 alone at home, and so wanted to wait until then rather than rely on babysitters. I was mostly too sick to be much of a mother to my kids and just let them run wild in in our bush. They had their own waterfall and stream with fresh water cray fish and plenty of trees to climb but there were plenty of hazards too, like the black sinking mud. They learned to be responsible, mature and self reliant in many ways which I think has been good for them. I'm working with a lady now whose children are older than mine and are so immature that she has to pay a babysitter for them or only work when they're at school.
            So don't worry about not being able to do things with them, or for them. Your kids will still love you just as much and you might even be doing them a favour in the long run. My IC has been awful for me and stressful for my husband, but certainly hasn't done our kids any harm. I used to be constantly tired and grumpy but they thought that was ok and normal b/c they'd never known any different, and their friends' Mums got grumpy too.
            Shelley

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            • #7
              Michelle: You said -

              I've heard my older tell my younger that he has to go play in his room because mommy's bladder hurts.
              Isn't it amusing the sense of anatomy our kids have at a young age b/c of our IC? My oldest was about 3 and a half when I got sick. He would ask about my bladder and I would try to explain where it is, etc. There have been many times where he asks (he's 5 now) if a certain food will hurt my bladder.

              One day I was driving him home from preschool and asked about the snack for that day - he is a very picky eater. He said he didn't eat it and then added, "It hurts my bladder." lmao I laughed and said, "Your bladder is healthy!!!" (And it was a food he has never eaten before and he hasn't had urinary problems ever. Just a little boy being silly - but I bet the other kids in his class have no idea what a bladder is! wink
              Kim

              Diagnosed August 2001

              Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


              Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

              I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

              *****************************

              “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

              “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

              Comment


              • #8
                Thanks guys..I guess life will go on and the kids will grow up just fine. I do feel terribly guilty because of my limitations and very frustrated at times . I do feel comfort in your support and could give you all a big hug! My 5 yr old has been very sick the past 4 days and even passed out and hit her head in the kitchen .(We rushed to the doc!!) She is better today. I was just happy to be comforting her and realized how much I am needed. Thankfully the IC gave it a little break during that time. Thanks again Flowerchild
                I'm Perfectly Imperfect and Praying for Remission

                Comment


                • #9
                  There are good and bad with amy family, and most of it is not related to disease. I used to be very active, slim, did EVERYTHING at the grade schools plus some, and would feel guilty if I DIDN'T.

                  When my kids were around 5th thru 9th grade.......I got really sick. I hid it from them.....sleeping when they were at school, continuing to do whatever I could.....but when I was diagnosed I knew I had to slow down. No more hiding. And we had to start the "potty talk" that I had avoided so often.

                  Now my kids are very very empathetic.....and they are 21 18 and 16 BTW.......I don't suppose it easy..........but they know and can read my face before I have to even say..I need a bathroom, or I am not feeling good.....

                  I do more things individually with them.......I go shopping or to dinner or we sit in bed and watch TV together.........I think I am doing a better job now as a mom than I did when I was running like a crazy person being a mom for ALL the kids in the school.........now.........I concentrate on my own.........

                  I have learned to look around me.....and see the other things people have to deal with.....diabetes, cancer, lost jobs, drug or alcohol abuse, ADD, or depression........on and on.........everyone has something.......it is how we deal with it that makes us who we are...........XOXOXOXOX grouphug
                  Julie Beyer, MA, RDN
                  IC Dietitian, Patient Advocate, Speaker, & Author


                  Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

                  Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

                  You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

                  ........ ........


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                  For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
                  Free IC Diet Booklet: What Can I Eat?
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