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  • #16
    That's good your stepmom is supportive of you. We all need someone.
    Gosh your fibro pain sounds so miserable. I hope your flare ends soon. I know things look brighter when you aren't in the middle of a rotten flare. I hope tomorrow will be better for you........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


    • #17
      You're probably right. I've tried so hard to keep a positive attitude, but now I'm wondering how much of that was all on the surface. Like, I want people to think everything's okay so they see me as being normal, you know? I try to live by the "fake it til you make it" philosophy, but I don't know if that's the best thing for this situation.
      **I could have my long list of current medications and diagnoses and the other medications that I've tried, but I'm going to focus on something more: words that inspire and motivate me to keep my head up and keep fighting.**

      "A bird doesn't sing because it has an answer, it sings because it has a song."
      "The honorary duty of a human being is to love."
      "The main thing in one's own private world is to try to laugh as much as you cry."
      "If you find it in your heart to care for somebody else, you will have succeeded. "
      "If you don't like something, change it. If you can't change it, change your attitude. Don't complain. "
      "The most called-upon prerequisite of a friend is an accessible ear. "

      These are all the wise words of my hero: Maya Angelou

      Comment


      • #18
        Its very helpful to let your emotions out
        Hugs
        Ronda

        ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


        Link to Patient Handbook:
        http://www.ic-network.com/handbook/

        Diet Reference Sheet:
        http://www.ic-network.com/diet/icndi...tsheet0909.pdf

        Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

        Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

        Meds I have Tried:
        Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
        Lexapro< Bad reaction to this med!
        Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

        Dx With IC in Nov 2006 with Hydro/Cysto
        Hydro/Cysto Caused Bladder to Rupture.

        Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



        ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

        Comment


        • #19
          Yes it is- I can't say my pain is gone, but I do feel slightly better. I invite anyone else to come here to vent. It'll do you good.

          Thank you all to everyone here at ICN. I appreciate you all so very much.
          **I could have my long list of current medications and diagnoses and the other medications that I've tried, but I'm going to focus on something more: words that inspire and motivate me to keep my head up and keep fighting.**

          "A bird doesn't sing because it has an answer, it sings because it has a song."
          "The honorary duty of a human being is to love."
          "The main thing in one's own private world is to try to laugh as much as you cry."
          "If you find it in your heart to care for somebody else, you will have succeeded. "
          "If you don't like something, change it. If you can't change it, change your attitude. Don't complain. "
          "The most called-upon prerequisite of a friend is an accessible ear. "

          These are all the wise words of my hero: Maya Angelou

          Comment


          • #20
            Andrea...Soft, tender, motherly (((hugs))) coming at you. I am so sorry you are feeling so bad. I wish I could come in person, but since I can't, please except these cyber ones instead.
            Sharon

            Shopping??? Did someone mention shopping? I'll get my hat... ;-)

            Where I can be found most days.



            Link to the ICN Patient Handbook:
            http://www.ic-network.com/handbook/

            Link to the IC Diet:
            http://www.ic-network.com/diet/


            IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

            Comment


            • #21
              Thanks Sharon.

              When I woke up this morning, my pain wasn't as bad as it was the two days before. Maybe what happened last night was exactly what my body needed. Hugs to everyone and I hope you all have a great weekend.
              **I could have my long list of current medications and diagnoses and the other medications that I've tried, but I'm going to focus on something more: words that inspire and motivate me to keep my head up and keep fighting.**

              "A bird doesn't sing because it has an answer, it sings because it has a song."
              "The honorary duty of a human being is to love."
              "The main thing in one's own private world is to try to laugh as much as you cry."
              "If you find it in your heart to care for somebody else, you will have succeeded. "
              "If you don't like something, change it. If you can't change it, change your attitude. Don't complain. "
              "The most called-upon prerequisite of a friend is an accessible ear. "

              These are all the wise words of my hero: Maya Angelou

              Comment


              • #22
                Well, in that case. I am in sooooo much pain. My bladder hurts like crazy! I have tried so many different things. The only thing that lowers the pain at all is MS Contin and I don't want to take any more right now because I'm at work and we're having this big Cinco de Mayo lunch and I have to go pick up the food with my boss and run all these errands around town. I hurt sooooooo bad. I might just take a 15 mg pill. When I had my lunch for secretaries day with my boss I was feeling kind of loopy and my eyes felt bloodshot I don't want her to think I'm a pill popper or anything. I know she doesn't understand what I've been through although I've given her bits and pieces of the story.
                Owwwie!!!!!! And the food is going to be so yummy, but what can I eat. Maybe some tortillas and salad without dressing. The beans are heavy and sit in my stomach and make me hurt more and the rice is definitley out because of the tomato. They're serving beer too and I can't have one.
                Well, I feel better -not physically, but psychologically. Letting it out does help.
                i feel for all of you. Being in pain is such a struggle. I have definitley wanted to go to the hospital at times and felt like they wouldn't even be able to help me. At least now I have a diagnosis - although it's a dreadful one.
                My mom isn't the lovey hugging type either. I love her very much, but she hasn't been the one for me to lean on with this disease. She doesn't understand it really. She bought me some sugar free candy thinking I could have it. I felt really bad because she was trying and I can't have sugar free stuff like that.
                I hope you find some answers Andrea! We are always here to listen and try to help. ((((((((hugs))))))))))

                Comment


                • #23
                  I think we all can truly understand what you are feeling regardless of the fact that u may or may not have IC. Many hugs coming ur way!!!

                  I also feel that way most of the time and I have been like this for the past 3 yrs I guess. I have my good days and then I truly have bad days and then I have inbetween days. The last 3 yrs I have been having female issues. A dermoid tumor was removed along with an ovary and I have had ovarian cycst for sometime. After being in pain and having my last child my doc and I decided to just go ahead and do a hysterectomy.

                  The only problem is that I have still been having the same pain. So I got a second Op and what do u know I have IC.

                  So I have a total of 3 kids, but 2 are small age 3 and 7 months, my oldest is 10. It is just terrible cause I don't feel good most of the time and I can't play with my kids like I did with my oldest.

                  The worst part is that I don't think I could hold down a job either....just because I have to void so much and I'm in pain most of the time and have to take pain killers. I have tried to start up a photography business but it is very slow and coming. Mostly because once again I'm in pain....who isn't.

                  I have tried the IC diet and I have found that there are just some foods that give me problems....so of course I stay away from those. Trail and error right now anyways.

                  Well thanks for letting me rant it felt good.
                  Live your life to YOUR best, and Love to YOUR best!!!



                  DX in 03 with Shingles
                  Removal of Left ovary due to Cyst in 2005,
                  I have had cyst since I started my period as a child age 12
                  Hysterecotmy December 06
                  IC DX March 07 by PST
                  2 "rescue" instills in March 07
                  Cyco May 07 confirmed IC
                  Uro study June 07
                  1st Pain Block July 17,08
                  Hydro/Cysto Nov 11, 2008
                  12-11-08 was told I had alot of inflamation

                  Meds: Allergic to 6 things
                  Premarin......taking the gen cause I get it at Walmart for 4$$
                  Presique for my drepression :woohoo:
                  Abilify for my depression
                  Adderall ...found out I'm ADD...makes sense now
                  Kolopin for anxiety
                  Noroco for my pain
                  Valtrex for my shingles as needed

                  Sorry if my spelling is off on the meds [/FONT]


                  http://community.webshots.com/user/s...host=community

                  Comment


                  • #24
                    Ok, my turn to rant now too! :-) I really feel for you Andrea, I really do, especially being so young and feeling so hopeless, but dont' give up. I haven't even really been on the boards much the past two weeks, because I myself have been in this 6 week long flare and it's just driving me crazy! I too am getting so angry, feeling like I'm trying to do everything right and everytime I seem to take 3 steps forward, I then take 5 steps back! I've had this disease for about 13 years now and still just can't seem to get a handle on it. I went to the ER for the first time ever, for this pain I'm having, thinking maybe it was an infection or something ,but it wasn't. Then finally got a doctor to see me last week and she kind of scared the heck out of me, telling me with this look on her face that she wants to do tests on me to check for Bladder Cancer! HELLO, that scared the heck out of me. I've never had a doctor use the "C" word with me before. I went for the sonogram on wednesday, and just going for that stressed me out and made my flare even worse. Then I go for some bloodwork and a possible Cat Scan. I'm just beside myself with this pain lately, and I have a wedding to go to in a couple of weeks out of state, so the flying part and wedding are stressing me out to because of the pain. I'm just getting so angry about it lately. So I totally understand how you are feeling and sympathize with you. I hope your continuing to feel alittle better. I'm SO sick of taking pain medication! Take care and hang in there,

                    Kari
                    Kari

                    I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

                    Comment


                    • #25
                      Stac , oH that is terrible. Do you feel like you would have still gotten the hysterectomy if you'd been diagnosed with IC first? I thought all my problems were related to my uterus before I was referred over to my urologist. I almost went on hormome therapy and even considered a hysterectomy when I was having all this horrible pain with no explaination. I am so sorry you have been through all this.
                      Your kids are lucky to have you whether or not you can play with them a lot. They have each other too!! I would love to have children. I'm almost 27 and just don't know if I will be able to handle a pregnancy. I sometimes with that I had a child with my husband right after we got married when i was 24. It's not good to have regrets though. And really I'm sure it is very difficult to have little ones with this condition.

                      Comment


                      • #26
                        Kari, will you be getting a CT scan? I had one of those and I hope you have an easier time with it than me. You have to drink a lot of liquids, so make sure to empty your bladder as much as you can before you get onto the table to get the scan. I won't take long, but i felt like my bladder was going to burst.
                        Try not to worry about the suggestion of cancer. I think your doctor is probably just wanting to rule out any other possilbe causes of pain and you should be fine. I wouldn't even worry about it. Sometimes people say you should prepare for the worst, but i think it's highly likely that the pain is the IC on its own. Best of luck!!! I will be thinking about you.

                        Comment


                        • #27
                          Thanks Abliske,
                          I didn't know you had to have fluids for the cat scan? I thought it was just like an X-ray, so thanks for the warning. I'm really trying not to worry about the "C" thing, I know it's probably just the IC pain, just much more intense this time for some reason, but it was just scary hearing the "word", you know? I'm sorry your having such a terrible time too right now, it really stinks. I've been dealing with this for such a long time now, that sometimes you just get worn out from it, mentally and physically. This is just one of those times for me, but I know it will pass eventually, for awhile anyway. Thanks for the info and feel better soon,

                          Kari
                          Kari

                          I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

                          Comment


                          • #28
                            When are you getting the scan done?
                            Annie

                            Comment


                            • #29
                              I'm glad you all are able to use this thread for your benefit

                              If it makes you feel any better, when I saw the uro a few weeks ago for the first time, he tested my urine for signs of bladder cancer (I didn't even think that was possible) without even talking to me about it. He just said, "Well, we tested your urine and this isn't cancer" ... The other are probably right- it's just a precaution. I don't blame you for being freaked out, though. I'd probably feel the same way, but just know that it may not be as bad as you think.

                              I'm sending a big 5'1" hug to all of you who are hurting (emotionally and physically). I hope things get better soon. I know that for me, the ICN helps me to feel less alone in this world. It's so great to have people who can empathize.
                              **I could have my long list of current medications and diagnoses and the other medications that I've tried, but I'm going to focus on something more: words that inspire and motivate me to keep my head up and keep fighting.**

                              "A bird doesn't sing because it has an answer, it sings because it has a song."
                              "The honorary duty of a human being is to love."
                              "The main thing in one's own private world is to try to laugh as much as you cry."
                              "If you find it in your heart to care for somebody else, you will have succeeded. "
                              "If you don't like something, change it. If you can't change it, change your attitude. Don't complain. "
                              "The most called-upon prerequisite of a friend is an accessible ear. "

                              These are all the wise words of my hero: Maya Angelou

                              Comment


                              • #30
                                You did good Andrea with your ranting.. This post gave a few of us some reason to rant.. I know it made me feel better to get it out.. You know we do need a thread where we can just go to and rant..LOL.. Sometimes it just feels good to get it all off our chest
                                Hugs
                                Ronda

                                ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                                Link to Patient Handbook:
                                http://www.ic-network.com/handbook/

                                Diet Reference Sheet:
                                http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                                Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                                Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                                Meds I have Tried:
                                Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                                Lexapro< Bad reaction to this med!
                                Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                                Dx With IC in Nov 2006 with Hydro/Cysto
                                Hydro/Cysto Caused Bladder to Rupture.

                                Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



                                ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                                Comment

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