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  • I need a rant thread...

    We need a rant thread... I'm so ****** off with life!

    I hate that I have something that cannot be helped. It feels so out of control. I hate that I am 20 years old and my life is already completely consumed by two diseases. I hate that I'm in pain every day, all day. I hate that I can't go out to parties with my friends because I have to be in bed and because it would take me a week to recover from just one night. I hate that I'm alone all the time in my house. I hate that my hip is killing me and there's nothing I can do about it. I hate that I have so many opportunities to succeed in life, but I can't because of my body. I hate where my life has ended up and I hate my mother for getting me here. I hate that people expect me to maintain such a positive outlook when they have no idea how much agony I'm in every single day. I hate that I have had to go through so much in such a short period of time. I hate that I have been forced to grow up so quickly and have had my teenage years, supposedly the best years of my life, taken from me by these diseases and the stress that led me to develop them. I HAAAAAAAAAAAAATE LIIIIIIIIIIIIIIIIIIFE. I need someone to hold me.
    **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

  • #2
    Today in rehab, I was waiting for my pt to help me. I could hardly sit up straight because I was in so much pain and had been waiting for over an hour. I was literally fighting back tears and another trainer comes up to me and says, "It's okay to smile, Andrea. It's Thursday!" She knew how much pain I was in and clearly I wasn't in the mood. I'm expected to have so much light and be so cheery but I can't be like that anymore.
    **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


    • #3
      Andrea, It does suck sometimes. I know how hard it is to try to be happy when you feel like such crap. One of my co-workers made it sound like it was a crime that I was in a bad mood today. Sorry, I have a horrible head cold but can't take and decongestant for fear that it will make my IC flare worse than it already is flaring and I kinda had a fight with my hubby on the phone today. Somedays we just have to tell people, no, I don't have it in me today to be cheery and smile through it, today I am miserable. I hope that you start feeling better soon
      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


      • #4
        I can honestly relate sometimes I get in my moods and feel like just screaming at the world, but you know they would probably not listen and just think im .. But hun we here at the ICN do understand how you feel.. Life with IC affects all of us some in differant ways..I honestly think being single with no kids could be easier, but then I see people like you who are so young and without kids and see its no easier..I wish I had the answers for you but I dont.. But I can be here for you to scream and yell and vent all you want, because I do understand..(((((((hugs))))))))))

        Ronda
        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


        • #5
          (((hugs))) Yeah, know how you feel. Sometimes I wish I could take those cheery people and....You can fill in the blanks!

          Comment


          • #6
            Go ahead and let that anger out!

            Andrea,

            We can relate! Yes it sucks! Sending you empathy. Sometimes allowing ourselves to be angry and mad can help us process the IC and other chronic diseases situation, which leads us to a better place. Hang in there and don't feel bad about wanting to scream. Maybe you PT isn't good enough to be treating you if she doesn't understand chronic pain. She is the last person who should be treating you in that manner! (No I am feeling your anger just thinking about her remark!

            ads

            Comment


            • #7
              It feels good to cry. I'm so tired of hurting all over. I just can't be a "big girl" about all of these things. I wish I had a "mommy" who understood me and would hold me until it all goes away. I never had that kind of a mother. I never had anyone to run to when I needed to be hugged and loved. God... I feel so alone and lost. Is this how I'm expected to live the rest of my life? How can I? Where do things go from here?
              **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


              • #8


                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


                • #9
                  Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                  Wishing you happiness and good health, and all the best out of life.

                  Peace, Carolyn
                  ___________________________________________________

                  Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                  On the Beach with IC

                  Comment


                  • #10
                    I just emailed my doctor. He's been the most incredible physician I've ever had- he's the only rheumatologist I've had that actually believes me and sees me as more than a chart. I called my stepmom to talk, but was cut short as she had her three little ones to tend to. I just bawled my eyes out, maybe that will help... eventually.

                    <<Day two of the worst hip pain I've ever experienced. I spent three hours in the training room today- two different PTs tried to help me, but absolutely nothing has relieved this pain (we tried electrical stimulation and ice, heat, soft tissue massage, joint mobing, among other things). Is there anything else they can try? Even while lying down with no pressure on the joint I'm in horrible pain. I started the prednisone, so we'll see how that works. I thought about going to the hospital last night, but figured that wouldn't do me any good.

                    I know that you strive to help your patients understand their bodies and honestly, I need help with mine. I've done everything you've asked me to do and I've taken care of myself to the best of my ability, so why is my body failing me? Since the medications aren't working, I'm desperately trying to find other methods that work to bring me some relief and I'm kind of running out of ideas. How are people like me supposed to be able to function in this world? What else am I supposed to be doing here?>>


                    Sorry I'm whining. I'm usually good at keeping things together, but it's been such an exhausting week and I don't see the point anymore. I hurt on the inside and the outside and I need help.
                    **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


                    • #11
                      How's this for irony: For years I restricted my food and did everything I could to control my body. I hated my body for being "normal." I wanted to be rail thin.

                      Now, here I am begging my body to be normal, but in a whole new way. I took my body for granted for all of those years. For so long it was healthy, perfectly normal and I abused it. It's amazing how the tables have turned.
                      **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


                      • #12
                        To give you some hope..

                        Things do get better with alot of people who have IC, they have not been cured because there is no cure right now, but they have found the right meds that work for them.. About 6 months ago I felt like I could just die..But now I am doing alot better with the meds my doctor put me on.. She kept saying one of my problems was I was depressed.. I was like DUH!! you would be depressed too if you just got married and could not make love to your new husband and now I find out I have this incureable bladder disease and just passed 4 kidney stones and my dad passed away around the same time, not to mention I lost my home in hurricane katrina with all my pictures and things that were very dear to me, plus on top of a few years back the kids dad comits suicide...SO YES I WAS DEPRESSED...lol But I made it through all that and you will to.. Just take one day at a time. If you dwell on the future it will just make things worse.. ((((((((((hugs))))))))))again.. sorry I just let it all out..But like I said I get that way sometimes..
                        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


                        • #13
                          Hi! I sure feel for you and all you are going through! Life is tough enough with out having to deal with such crappy medical problems. Life really can suck some times!
                          I've dealt with IC for over 25 yrs now and there's been times when I just wanted to stand in the middle of the street and scream at anyone who came near me! I don't think anyone understand our pain unless they have dealt with it themselves.
                          It does help to cry.....get it out and not hold it in because that just makes pain worse.
                          I'm sorry you got the brush off from your stepmom when you were reaching out for her. All of us here on this site are here for you......you can PM me or any one else if you'd like to chat, scream, yell or cry......we are here for you......just write. Big (((HUG))) to 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


                          • #14
                            Oh my stepmom didn't brush me off... She has always been there for me because she has mysterious medical problems, too. She's my closest support, actually. She just had to go quickly, so I didn't really get to finish talking to her. I don't know where I'd be without her.

                            I still don't think I have IC. I think it's Endometriosis. I'm being treated for IC to rule it out, which is very frustrating all on its own. My uncontrollable pain is Fibromyalgia. I've had a horrible flare for the past eight days and it's been the most intense one I've ever had. It's still spreading, too. It just spread to my thumb joint and my elbow. I'm running out of joints...

                            I really hope my dr. emails me back soon. He usually does around this time of night. Another thing this other trainer (not one of the ones that was helping me) said to me today really bothered me...
                            I was talking to one of the trainers, her name is Christy, and was saying how bad the pain was and that I emailed my dr. last night to see what I should do. Then Missy, the trainer that's really insensitive to me interrupts me and says... "What... Take more pills?" I kind of brushed it off, but seriously, I'm so tired of being known as the pill popper. It's not like I choose to take so many pills. It's not fun for me. The side effects are a ***** sometimes and it's insensitive comments like that that really push me over the edge. I'M SO SICK OF IT.
                            **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


                            • #15
                              Oh yeah, Leelee... this thread isn't just for me. I hope other people feel like they can rant here. It's a healthy way to manage anger, I think.
                              **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

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