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I knew this would happen - all alone now

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  • I knew this would happen - all alone now

    I totally knew this would happen after I had this phone consult with an IC doctor on the phone. My parents wanted to be on as well in case I forgot something but it turns out they wanted to be on so they could use what the doctor said against me. I shouldn't have let them stay on. I spoke to them on the phone a few minutes ago and they said that they decided that if I don't follow the suggestions of this doctor than they won't help me anymore because "I won't help myself". GIVE ME A BREAK! Who are they to judge me like this! Of course I want to help myself but I just want to do the right thing and everything I have done since I got this as well as before has been wrong. In fact it was something I did which gave me this so of course I'm reluctant. Also the small fact that my life is on the line. I have lost everything this year to this stupid disease. A year ago my life was just about to start as I graduated from law school and now look at me. Sorry I went off on a tangent. I don't know what to do now. I'm totally alone. My brother says it doesn't matter because ultimately everyone has to rely only on themselves but I really needed my parents' support as they were the last to offer it to me unconditionally (you don't get that from friends). Also since I am incapable of working and ineligible for disability I need to rely on them financially. I have tried explaining to them what I am going through, have tried showing them articles etc. but they just don't get it and they don't respect me and what I'm going through and they never will. I don't know what to do...can anyone help me?

  • #2
    (((((((((ok sweetie)))))))))
    Just calm down for right now... we will help you figure something out.... deep breaths....

    I have a couple questions for you, cuz I always have ideas
    1) How old are you?
    2) You've got a law degree (congratulations!) - have you ever worked at all, anywhere? and when.. all that info.
    3) ok the question I'm getting to... have you already called social security? If so, what did they tell you? There are also other programs, like SSI you could try for or AND, (Aid to the Needy Disabled)....
    4) what state are you in?

    I just had a thought... I wonder if it would help for Jill to speak with your parents? We could also write some very kind letters to your parents so they have an idea what others with IC go through? Would your parents read them? Do they do their own ic research or just take your doctors advice? We could help explain so many things to them to help you. I think at first with my husband, when I'd tell him how I felt, he wasn't sure to believe me. He's never heard of anyone feel that way! But I shared posts with him and he is coming to a much better understanding of me through hearing what other go through too. Let us know, ok?

    You've got unconditional love from us. We all know.
    We love you! Please let us know soon how everything is going and how we can help.
    mailto:[email protected][email protected]</A>


    • #3
      For starters - you did not bring this disease on yourself. There are just too many of us out here - all with different backgrounds - to believe that there is anything in particular that any of us has done to cause it. Secondly, don't beat yourself up over having your parents on the other end of the phone - it's given you a lot of valuable information about how your parents think and it is something to take into consideration when making future decisions. As far as their support being unconditional -- it doesn't sound like it to me. (Sorry, hope that wasn't too blunt - I'm not knockin' your parents here, they sound like great people, but they are human). And last, but not least, just out of curiousity -- what treatment did your doctor recommend to you? Maybe your parents are just very scared and want there to be a "magic wand" that will make it all go away. I don't blame them, but unfortunately that isn't very helpful to you because you must live with reality and not in "magic" land. I sure hope you can work out a compromise that is suitable to everyone, but in the end you are the one who has to live with the disease and with your body, so you have to do what's right for you.


      • #4
        I feel so badly for you. It sounds like you're emotionally wounded as well as being in great physical pain. Not a good combination.

        Sometimes a different perspective helps. I think Brenda is on to something. Perhaps your parents love you so much that they are angry that there is nothing they can do.

        My Dad, who has always been extremely uncommunicative when it comes to feelings, etc. still can not believe that there is not a treatment for HIS daughter. He sometimes has appeared angry and upset, and there were days when I thought he was angry at me, also.

        There cannot be a disease, not only without a cure, but without a way to make his daughter feel better so she can lead a normal life! And, LM, I am 51, but we are still our parent's children, no matter what!!

        The idea of many of us writing letters to your parents telling our stories sounds like a good one. We are real people who have had our lives turned upside-down by this awful disease. We come from everywhere, and as someone else said NO ONE gave this disease to him/herself.

        We'll find a way to get through this together, LM. Let us know if you'd like those letters and where and when to send them. You might also like to check out the invisible disabilities web site. I'll try to look up the address for you. IT gives great tips for those trying to help others who have chronic diseases such as ours.

        In the meantime, please keep writing on the boards. Don't get discouraged, our dear LM. We know you are overwhelmed and frustrated.

        Write me at [email protected] if you'd like. Sending healing hugs and many, many, prayers your way.

        One of your many IC sisters and brothers,
        Susan {{{{{{{{{{LM}}}}}}}}}}
        Positive thoughts and prayers that new treatments for IC will reach all who struggle with this disease,



        • #5
          Thanks guys. Thank G-d I have this place. In answer to your questions, Terri: I'm 27, I have had some summer jobs, I live in Canada, and I always assumed I wasn't entitled because I have never really worked...I think someone in my family told me that. Anyways they must be wrong because I actually called a few numbers this morning but I'm not sure...I'll know more tomorrow and I'll let you know...
          And I just don't know if telling them about others' experiences will make a difference because they'll find a way to discount what others say as well. For instance my mom has a lot of health problems and she always says "well I can find people who have what I have and are lying in bed but I'm living my life", implying that it's really a choice of people, at least for some people who my mom would say make a career out of being sick... So maybe I should give up trying to convince them and just accept that they don't understand and don't respect the way I'm handling it. Maybe I'll be less stressed from having to waste all my energy trying to convince them of things...I don't know...

          Brenda: What this doctor suggested was Elmiron plus other things like PFD, etc. This was a very well known IC doctor who has treated 6000 IC patients but the doctor said when (if) I go into remission they try to get you off the Elmiron and that many people stay in remission. Obviously I was skeptical because of everything I have read on my own - even the Elmiron pamphlet says it'll come back in around a month after you stop. But this doctor was sort of saying if you do other things as well then you can help your bladder "heal" of course my parents now have it in their head that Elmiron is a cure so long as I combine it with other things and they say this doctor knows more than the others I have been to etc. so they're basically making me follow the doctor's instructions. Which is why I wish they hadn't been on the phone because now we'll end up having a screaming match over the fact that the doctor was admitting some things will just mask the symptoms but was saying others will "cure" me. I'm sure the doctor believes it to some extent and is also trying to sound optimistic but it was detrimental for me because my parents heard those words and now they are clinging to them (and forgetting everything else the doctor said, like how in a few years they will have BETTER treatments etc.) and it gives me less credibility and less respect, of which I had very little to begin with. Anyway I could go on but you get the idea. And I know their support isn't unconditional anymore and that is why I am so upset...they were the last ones to offer it to me, or even if they weren't I guess I was still expecting it, and now it is gone too. Thanks for listening....sorry to ramble

          whoops I just saw Susan's response to. I actually found that invisible disabilities website when someone posted it here a few weeks ago - I gave the printout to my mom about things to say and not to say to someone with chronic illness, and..this is a perfect example of what I was saying about my mom...but she said it's kind of defeatist sounding etc. so it made no difference. You are probably right about them being angry- especially my dad who likes to have control over everything...but I wish they would direct it elsewhere

          [This message has been edited by LM (edited 06-07-2000).]


          • #6
            Honey, it sounds like your parents are in denial- parents do that. It's too hard for them to accept how helpless they are to fix this for you so they end up adding to the problem. Down the road they may come along. When you are calmer, you may want to give them a gift of an IC book.
            As for work, your law degree may come in handy in the on line world. Many websites need lawyers to do on line work- write columns, answer e mails from people- the kind of jobs where telecommuting is a distinct possibility. When you are feeling strong enough, go ahead and start searching the web. You can even sign up on so check that out.
            This is a good time for you to look for a support group. Perhaps if there is no IC support group on your area, you can look for a chronic pain support group. Start by contacting pain clinics which many hospitals have these days.
            IN the meantime and afterwards, keep coming here for support. We care and we are thinking of you. and we know you are not lazy and that your pain is very real.


            • #7
              ONe more thing- five months if elmiron and two years of physical therapy and chiropractic work and several months of neurontin to combat the emergency messages my spine was sending out have helped me. No I am not cured but I am not in constant pain and I can function almost all the time. There is hope- the doctor is not totally off base. That in no way means that your pain is not so friggin all encompassing right now that you can't see straight. Please e mail me if you want to feel hope and if you want to feel if for realistic reasons. I work very hard at having the quality of life I now enjoy most of the time but there was a time when I was like you. I swear it!!! [email protected] is my e mail and I hope I hear from you! Remember, not everybody on this board lives in total pain all the time and I have been on these boards for years now. Your life has taken a bad turn, true, but it does not have to be virtually over for good. When you are ready to entertain that idea, I hope you reach out to me.


              • #8
                Dear LM,
                Your parents sound frightened and frustrated. Parents want to fix everything for children and some things are not so easily fixed. The treatments that the uro is suggesting are not bad to try, but this is your personal choice. If you don't feel comfortable with what he is suggesting try to get a second opinion. There is no cure for IC that I know of and I have been dealing with this disease now for 32 years. I tried DSMO treatments a variety of medications and am now trying Elmiron. Do some research for yourself on this site and others about the current treatment approaches and read about their success rates. Hope you find something you are comfortable about trying to manage your IC symptoms. This site is great for support you can tell people exactly how you are feeling and no one is here telling you that you should feel differently.
                Your IC friend,