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  • Thanks to all of you

    You all have been great.Thank you so much for the warm welcome. It is really nice to be understood and feel like i am not just crazy.A liitle about me I am 30 and have 2 living sons ages 3 and 7 and I just recently lost my stepson age 10 in december to a car accident.I feel like since the accident I have really gone down hill with my health. It is amazing to me how well you all keep your chin up.I spend all day in pain and trying to just go minute by minute. I feel like my life has been turned upside down.
    I have had trouble with my bladder for about tens years.Before just recently diagnosed the doctors thought it was my ovaries and have removed four cists four seperate times. Now they know it is IC. Sometimes I feel so useless to my family.Between grieving my son and dealing with IC,it is really hard to be positive lately.Well I appreciate all who have taken the time to read this and really need all the support i can get.Thanks again to all my new friends.
    Catherine Allen

  • #2
    So sorry

    I am so sorry to hear about the loss of your stepson. The pain of IC is so much to bear and you have the pain of your loss to deal with also. I am saying a prayer for you and sending healing energy your way...lan
    Sudden onset of UTI like symtoms on Dec 27, 2006.
    Diagnosed with IC on March 12, 2007.
    Current Meds: 50mg Elavil
    "Be kinder than necessary, for everyone you meet is fighting some kind of battle" author unknown

    Comment


    • #3
      Hi, OMG I want to say to you......how are you managing??
      I feel SO for you! It's hard enough to deal with IC on a daily basis.....but to lose a child on top of that......All I can say is Sorry, Sorry, Sorry.
      I wish there was something I could do for you......but you will be in my thoughts and prayers. Please do take it one day at a time.......one min. at a time if that's what you need. I'm here....PM me when ever.......day or night because I'm up half the night dealing with my own pain........so I've got a good shoulder! Take care of yourself sweetie (((hugs!))).....Roxie

      Double Spinal Cord Stimulator surgery 8/09
      Unsuccessful MiniArc sling surgery 12/07
      Dx'd Hypothyroid
      Dx'd Chronic Axonal Neuropathy & Myopathy
      June 2007
      Dx'd IC May 2006 (after suffering for 25+ yrs!)
      First Cysto 1979
      First Hydro 1981 (Many treatments since then!)
      Collagin"Durasphere" injections for urethra
      Gall bladder surgery Aug. 2004
      Gastric Bypass Dec. 2004
      Dx'd: Barrett's Esphogus July 2004
      Dx'd: Vaginal Atrophy 2005
      Bladder surgery 2000
      Dx'd: IBS 2000
      Hysterectomy (fibroids) 1999
      Laminectomy 1989
      Dx'd: Degerative Disk Disorder 1989

      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

      Comment


      • #4
        Welcome Catherine!

        So glad you found us! It's amazing isn't it? To have so many people know exactly how you are feeling, when just a short time ago, we thought no one understood. Not even one.

        It's very common it seems for IC to be set off by trauma. My IC was set off five years ago with my husband's motorcycle accident and paralyzation. Multiple traumas after that just exacerbated my illness and kept my bladder in a state of constant tension. I just was finally diagnosed after five years, in December of 2006. A very long time to suffer and not know what is wrong.

        You will find that many of us, like you, have been through multiple doctors, and multiple diagnoses before finding the "right doctor, and the right diagnosis".

        Our lives have all changed radically and we will never be the same. But finding this place. This safe haven, has finally started most of us on the road to a better life. I hope that you will find it to be so as well.
        http://www.TheCraftyEwe.etsy.com

        Comment


        • #5
          Dear Catherine Allen,
          oh My dear, you have gone through so much haven't you? I join in with my IC friends here to tell you how sorry I am for your loss. Now, to have the diagnosis of IC...but this is something that can have its wonderful ups and then the downs. Pleases stay connected to this board for support. I care and I know this board is full of kind, caring individuals. I hope that time gives you some type of healing about your loss. It is something that no one really understands completely unless they walk in the shoes of what you have been through. Please know that your IC has a good chance of improving and just make sure you follow the diet that causes the least trouble, and have a great Doc who can keep you up on the latest.

          Sweetie, so very sorry you are having a hard time, and please know you are in my thoughts. You are a brave woman and you will get support here.

          Love to you~
          Katheryn

          Comment


          • #6
            I'm so sorry for your loss. And it's true that our emotions effect our health. Have you talked to your doctor about possibly taking something to help you through these next few months?

            Warm 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


            • #7
              Katherine: So sorry for the loss of your son. To lose a child so suddenly, I can't imagine.

              Sorry as well, that you found us and this board. Please know that we are all here for you. God Bless.

              Comment


              • #8
                this is catherine thank you for your support

                Well sorry it has been a few days since i have touched base.I was admitted into the hospital due to my kidney,bladder,ovaries and uterus. To make it short I will be having a hystorectemy at 30yrs old in about a week. The doctors believe that my ovaries are not going to stop growing cists and my uterus just continues to swell maybe once this is done i can focuse on this IC disorder and i will know when the pain comes it can only be from (IC)

                I appreciate all your support.like i said before day by day with GOD on my side.well I hope everyone is doing good haven't had a chance to explore around and read but that is my next step.love catherine

                Comment


                • #9
                  Hi Catherine,
                  Just wanted to add another post to welcome you. I'm so sorry for your loss and for all the struggles you are having. Just take things one day at a time for now, okay?
                  There are lots of ways to manage IC (diet, exercises, medicines). When you are ready, the Patient Handbook link at the top of this page is a great place to start (especially the diet section).

                  Sending a hug, prayers & wishes for better days soon--
                  Kadi

                  -------------------------------------------------------------
                  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.
                  ------------------------------------------------------


                  New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                  Source - Pinterest
                  "


                  Current treatments:
                  -IC diet
                  -Elavil 50mg at night
                  -Continuous use birth control pills (4-5 periods/year)
                  -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                  -Pyridium if needed,
                  -Pain medicine at bedtime daily, as needed during the day several times per week
                  -Antibiotic when doing an instillation to prevent UTI
                  -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                  -Dye Free Benadryl 50 mg at bedtime
                  -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                  -Managing stress= VERY important!
                  -Fur therapy: Hugging the cat!

                  Comment


                  • #10
                    HI Catherine,
                    I'm SO sorry for all you are going though at such a young age. I hope after your surgery your life will be much easier and you can get the IC under control. Good luck to you! ((((HUGS!)))) Roxie

                    Double Spinal Cord Stimulator surgery 8/09
                    Unsuccessful MiniArc sling surgery 12/07
                    Dx'd Hypothyroid
                    Dx'd Chronic Axonal Neuropathy & Myopathy
                    June 2007
                    Dx'd IC May 2006 (after suffering for 25+ yrs!)
                    First Cysto 1979
                    First Hydro 1981 (Many treatments since then!)
                    Collagin"Durasphere" injections for urethra
                    Gall bladder surgery Aug. 2004
                    Gastric Bypass Dec. 2004
                    Dx'd: Barrett's Esphogus July 2004
                    Dx'd: Vaginal Atrophy 2005
                    Bladder surgery 2000
                    Dx'd: IBS 2000
                    Hysterectomy (fibroids) 1999
                    Laminectomy 1989
                    Dx'd: Degerative Disk Disorder 1989

                    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                    Comment


                    • #11
                      Catherine,
                      I first wanted to say, I am so sorry for your loss. The loss of a child is immeasurable anyway you look at it. I had a hysterectomy at 32 for bad plumbing like yours and I honestly don't miss the equipment anymore. While I feel bad sometimes when my friends are pregnant(I am 36 now)the fact I don't have cysts, bad periods or endometriosis is a blessing. Many prayers that you have a successful outcome and if you ever need anything, we are here!

                      Hugs,
                      Barb
                      (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

                      [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
                      :angel: IC Angel Volunteer Coordinator :angel:
                      :) Contact me via PM or e-mail if you would like to help
                      I have learned all about life in 3 words: It goes on! :D--Robert Frost
                      PCOS 7/85
                      RSD 7/94 :headbang:
                      Endometriosis 9/98 :toilet:
                      Antiphospholipid antibody syndrome 9/99
                      Kidney stones--too many to count
                      Factor V Leiden mutation 10/02
                      IC 6/03 :evilsmile
                      Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
                      "Spirit is an invisible force made visible in all of life"--Maya Angelou
                      "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]

                      Comment


                      • #12
                        Oh Catherine
                        I didn't see your post before. to the IC network. I also and so sorry to hear about your loss. I have three step children of my own and they all live w/ me and my hubby so I can only imagine what you are going through. I know that stress can through me into a flare more than anything else. I def think that it may be a good idea to talk to someone about your grief so that hopefully you can get your pain under better control. We are a very nice little family here though and we will all be here for you if you need us. Don't hesitate to PM someone if you need to talk, we all do sometimes.
                        Christine



                        I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                        1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                        2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                        I have tried every oral medication as well as rescue instills and DMSO.

                        I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                        Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                        Also proud mom to the best Bullmastiff on earth, Claus

                        Comment


                        • #13
                          Catherine, there are a lot of people here who can relate to what you're going through. My stepfather died in a freak accident a month before it seems my IC began, and no doubt the horrid grief and stress associated with that, along with many many many other problems, contributed. Even though I have always been close to my real dad, having Danny was like having a bonus dad and losing him hurt every bit as much as losing a biological parent. So many other things were going awry at the same time, and only in the past month or so has stuff begun to settle down and fall into place. Let me tell you, though, what it will fall into place for you. I know there's a lot of pressure for you right now, when you don't feel well, to care for your kids and to be there for your husband, and no one would expect you not to be. I want to emphasize to you, though, to make sure you take care of yourself.
                          When I first started to get sick, I felt the weight of the world on my shoulders. I felt responsible for everyone around me, like I was the only one who could hold the center in place. I know you have things you must do, and you feel like you can't be slowed down by feeling bad. It's an overwhelming position to be in. Just whatever you do, make sure that you have at least a few minutes to yourself each day. After the kids go to sleep, take a bath, or find time to schedule a massage. If you feel up to it physically, try yoga. Don't lose yourself because you're trying so hard to be everything to everybody around you, because that won't benefit anyone at all.

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