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  • earthlady
    replied
    Re: Anger?

    No I'm not on a strict IC diet anymore, although I do stay away from too many acidic foods as they just don't agree with my digestive system. I don't drink wine anymore because I lost my taste for it when I was on the IC diet. I would never recommend to anyone to stop the IC diet if it helps them. When my bladder pain stopped I just got used to not thinking about it anymore and gradually went back to a regular diet. I wish you luck ahirby and really do hope I see you here posting in the "I'm in remissiom" section a year from now- or sooner! Or at least posting that your symptoms are managed. I wish that for everyone on here. I really do know how painful and depressing this condition can be.

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  • ahirby
    replied
    Re: Anger?

    Wow, earthlady, thanks for updating! Are you still on the strict IC diet? Everything you said earlier in your post I am going through right now. Lord willing, I will post a year from now stating that I am in remission!

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  • earthlady
    replied
    Re: Anger?

    Since my original post I started a long time ago I wanted to update my 'anger' issue I was having way back then. After reading what Julie had posted I 'used' my anger to get better. I know it may sound strange but I was really getting tired of being told that my pain would never go away or that there wasn't much out there to really help. I found myself talking back to the doctors in my head (and also to a lot of the research stuff too). Darn it, I refused to believe I could NOT get better! I was determined to prove a lot of those drs. wrong. Don't know of this had anything at all to do with my remission, but I have been in complete remission for quite a long time now.

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  • DurangoMandy
    replied
    Re: Anger?

    I've had IC for as long as I can remember (and I'm 48). Anger and depression are still issues for me -- because IC is a debilitating disease. I used to be able to 'cheat' and have wine or chocolate and my symptoms would dissipate after a few days of drinking more water and faithfully getting back to the diet. For some reason, I don't 'bounce back' anymore. This has conjured up a lot of anger and frustration for me. I've just now realized that being pain-free means I have to get out of the "depravation mentality" and stick to the diet for life.

    I can't stress enough that it can takes weeks of sticking to the diet to feel relief. That also means giving up the alcohol -- because pain meds can't undo the damage you're doing to the bladder. Donna has posted some great advice. I've looked up menus at lots of local restaurants so I know which places I can find things to eat. I also carry string cheese, almond crackers and sometimes an almond butter sandwich in my purse or backpack. No refrigeration required and you're sure to have some nutrition handy.

    I remember seeing this analogy to IC pain (wish I could find the attribution!). You can add a drop of acid to a bucket of water and never taste the difference. You can keep adding a drop or two here and there, and still not taste the difference. But over time, adding drop after drop (i.e., cheating on the IC diet), suddenly that bucket is full of acid. I think this has happened to me -- cheating a bit here and there until my bladder cried uncle.

    Hang in there! It does get better and these forums are great places to get support!!

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  • ICNDonna
    replied
    Re: Anger?

    One thing I have noticed is that almost all restaurants have their menus posted on the internet. What you might try is to look at a menu, then jot down the items that look IC friendly --- then if you're going out to eat, just look in your little notebook and decide ahead of time what you'll order. And if there is something that you think might be okay, but not necessarily so, you can telephone ahead and ask questions. That way, when your husband asks about where you might be going, you can suggest a place based on your notes --- and even if you don't feel really good, sometimes just having somebody else do the cooking can help with your mood; plus he will be pleased. Another plus with eating out is that he doesn't need to eat what you can eat and you can still stay safe.

    Sending warm hugs,
    Donna

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  • Vegas12
    replied
    Re: Anger?

    I think you need to give the elavil a couple of months to work. Im on hydroxyzine, Ativan, and, oxybutynin. With regards to food, I started with fresh baked bread, rice, butter, carrots, and cucumbers. I slowly added more foods, and within weeks, I felt much better.

    Before I go to sleep I write in my journal what I ate that day. I also write down my activities, how my bladder felt, how my whole body felt, and what my mood was. Having a journal really helped me psychologically. When I felt no one understood, I turned to my journal and wrote how frustrated I was. I would look at notes I wrote when I had a good bladder day, and felt re-assured that I will get through this flare, because I had done so in the past.

    My husband was not supportive in the beginning. In fact, he used to demand sex and refuse to eat my bland foods with me. I used to cry uncontrollably, so I think I scared him off. Once I started my Ativan, my crying spells started to diminish, and I started acting like my old self. He eventually realized that my bladder problem wasn't going away, and that he had to deal with my disease, just like I had dealt with his ulcerative colitis. Men can be selfish and self- centered! I was always the strong one in the relationship. He wanted to be mothered, and idid a good job of that for many years. When I got frustrated with him one day, I told him "I'm just just flesh and bones and just like you, I got sick too, so deal with it!"

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  • lbushey2011
    replied
    Re: Anger?

    Vegas, thanks for the reply. You are right. I need to start thinking more positively or the negativity will take over.

    I don't usually isolate myself, it's just at times when I'm in a lot of pain or the pain killers haven't kicked in yet or they just flat out aren't working. I have been in flare since Dec. 9th. I take my med daily, Elavil, at night. When I'm having a flare, I was prescribed to take uribel or cystex and tramadol or vicoprofin. The problem is, is that I can't shake this flare! I have had a handful of good days since dec 9th, but most of them have been painful days so I'm having to take the pain killers daily. It has gotten to the point a couple of times where I've had to set my alarm for an hour before I actually want to wake up, just so I can take the pain killers and go back to sleep so I won't be in pain when I actually need to get up for work. It's hard for me to do anything when I'm feeling the pain. I usually only take the pain killers when I feel pain, and not "just because" but it's been really bad the past month and a half and I've had to take them almost daily. So the only medicine I'm on for IC is Elavil (which I've tried a year ago as well) and this time I've been on it since December (After my intense flare started) and my flare hasn't gone away. Do you think the Elavil could be part of the problem? Maybe it just doesn't work for me. When would I be able to tell? That's the only med I'm on to help with IC and my uro told me he's out of ideas. I haven't tried Elmiron because he said the side effect is hair loss (which would be devastating to have happen) and it only has a 30% success rate. Any suggestions as to other meds to try?

    I've tried days where I drank A LOT of water and ate IC friendly food, but still haven't felt better. I guess maybe one day of water overload and bladder friendly food isn't enough. I tried to do a bladder diary, but I am so busy at work that I end of forgetting to do it or just simply don't have time. I am going to try it again tho. I'll just have to write it on my hand or something so I remember, ha.

    It doesn't help that I usually get this way every winter too, even before I was diagnosed with IC. I've never been diagnosed with it SAD, but I know I have Seasonal Affective Disorder. In the summer, I'm usually fine and not depressive. Good news is is that we are trying to sell our house to move to Florida, so hopefully that happens and my SAD will not come back!

    I think I need to go to therapy and maybe with my husband too. There are just a lot of things that I feel need to be worked on. Don't think he'd be too receptive to therapy though. He can't even express himself (verbally, emotionally, or physically- besides sexual things) to me, so I doubt he'd even open up to a therapist. We don't have a lot of extra money too, so I don't know if we could afford it either. I'll have to look into it.

    It's just all these stressful issues with my relationship, my house, and my work, on top of the IC stress that's making me feel like I can't handle it all and is bringing me down. I'm usually a pretty strong person, and most people would probably say that about me, because most people don't know how much I'm struggling and suffering on the inside.
    Last edited by lbushey2011; 01-26-2014, 02:51 AM.

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  • Vegas12
    replied
    Re: Anger?

    I have been going to restaurants and eating prime rib, baked chicken, steaks, baked potatoes, hash browns, waffles, toast, and steamed vegetables. Please don't isolate yourself, by staying home every day. I had to stick to the ic diet and my medications for about six months before I had the courage to eat out. If you are not flaring, then by all means, try to integrate back into society again.

    This disease terrorizes us into thinking that we will never be able to do anything that we used to do. We get psyched into thinking that our lives are over. Well, if we don't snap out of it mentally, then physically we have almost no chance to regain our health.

    I used to be angry every single day, after I got diagnosed. I was suicidal and obsessed with trying to figure out what I did to deserve this disease. I experienced anger, shock, grief, and denial. Finally, I woke up one day and thought that if I continue to refuse accepting that I have IC, then I will never get better,I will lose my job, I will lose my husband, and I will lose my life. I decided to accept my diagnosis, regularly take my meds, sticks with my my doctors appointments, schedule my surgery, and face my disease head on.

    Im not going to lie, I'm still upset that I have ic, but ic doesn't have me. I'm angry that I can't order spicy foods at restaurants, but then I notice that other people in the restaurant are sitting in wheelchairs, or have oxygen tanks. I get upset that I can't enjoy sex withmy husband,but then I remember a time when I used to be alone and wished someone would just look my way. We are human, so we shouldn't deny ourselves the need to get angry. However, remaining in an agitated state will only make our bladders, our intestines, our uterus, our muscles, and nerves stay in a stressed, inflamed state.

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  • lbushey2011
    replied
    Re: Anger?

    Thanks, Donna. I appreciate the advice and you taking the time to reply to my post. I am still having a lot of pain. Since my husband and I go out to eat a lot, or grab takeout somewhere, I'm going to have to take some time to really go through the food list and think about things I can and cannot eat from our the typical places we go. I guess I kinda feel overwhelmed when I look at the list because I can't remember what I can/can't eat and really don't want to have to carry it around with me. I'll am thinking I'll have to study it and figure out things I can eat ahead of time.

    I'm still struggling with the depression issue. I just really don't feel like doing anything and would rather just stay in bed all day. Then when my husband and I get invited to do things and I don't feel up to going out and he does, then I get even more down. I guess I just feel that I don't get the support I want from him. Like when I'm in a lot of pain and he says "where are we going tonight" and I explain to him that I'm in pain and would rather stay in and he says he doesn't want to stay in, so he goes out and then here I sit, alone. I've also asked him to join this forum or just to go on it and read about IC to better understand how I feel and whatnot, and he did...for 5 minutes...so basically he just scrolled through, and didn't really take interest in anything. That makes me sad because it's something that's important to me because I am struggling with it, and I feel like he doesn't care. Not sure if how I feel about this is absurd or not...but it upsets me.

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  • ICNDonna
    replied
    Re: Anger?

    I'm really glad you found us. It sounds like you are needing a lot of encouragement, a lot of understanding, and maybe a little nagging. I know the diet is a challenge, but there are ways to get around it and stick within the guidelines. You mentioned pizza --- my suggestion (what I do) is to order a pizza without tomato sauce. I went without pizza for years and years, then one time I was stuck and there wasn't any other choice so I ordered a personal size with no sauce. Family members also tasted it and they said they like it that we --- so we have IC friendly pizza about twice a month at our house.

    I suggest that you print out a copy of the food list at the link in my signature below --- then stick with the bladder friendly items for six to eight weeks --- by that time you should have some idea about how much that will help. At first I was really upset having to give up some of my favorite foods, but it makes me feel enough better that I wouldn't even consider going back to those pain filled days.

    Sex can be a challenge, but with open communication and experimenting, it's possible to have a satisfying relationship. And if the diet helps, it will help in that area as well.

    I think we all either are going through what you are --- or we have been there --- and are feeling better now.

    I hope your tomorrow will be a better day.


    Donna

    Leave a comment:


  • lbushey2011
    replied
    Re: Anger?

    HumDucky, what you said is exactly how I'm feeling. I am also a teacher (realized you were when you mentioned homeroom and plan period) and I HATE to cook, nor do I have the time to cook...and when I do have extra time, I just want to relax...but then when I relax everything around me falls apart...laundry backs up, the house needs cleaned, lesson plans don't get done, IEPs are written last minute (I'm a Special Ed teacher), and I don't follow the diet because I have no time to cook. Im living on pain killers, as I've been in flare for over a month. I'm 24 years old and feel like I'm 90. At my age, when my friends get together, we drink and talk. I enjoy that time with them and I enjoy drinking with friends. I feel like it keeps me sane, however I know I'm going to be paying for it. But for some reason, I still do it. I am figuring out that I would rather take pain killers every day than give up my life (as I see it) and my freedom. I keep saying I'll try the diet, however I just keep putting it off. It especially is hard when everyone around me eats whatever they want. I want to stick to the diet, but it seems impossible to, as my husband will tell me he's going to stop at a pizza place and bring home dinner (we stop and get food a lot as we don't have time nor do we like to cook) and everything they have at the pizza place is things I can't enjoy...so then I think to myself that I can starve or eat this food that will satisfy me yet give me pain...and I choose pain every time, because then I just hide the pain with pain killers. It really is a vicious cycle.

    I'm feeling very depressed and angry about this whole thing. Do I continue to make "bad choices" by enjoying the things in life that make me happy, which later results in massive flares? Or do I basically give up my quality of life, abide by the diet, ruin my social life, and stay pain free? At my age, I can't see myself basically giving up my life to be pain free. I WANT to be pain free, but I also want to enjoy my life the way I want to...but clearly I can't have both of those things. I tell a lot of people about my condition because I want to make other aware of this, as I was misdiagnosed with UTI's for 7 years. And I also tell others because they probably think I'm crazy for peeing every 15 minutes. It's hard being a teacher when you have to pee every 15 minutes, so I tend to not drink much at work...but then again that's not helping me either! I really don't know what to do. I talk to friends, family, and my husband about it. Some are sympathetic but yet I know they will never know the pain I really feel, and I wouldn't want them to. I have one friend that I talk to about this daily. She's literally like my counselor, ha. But I'm sure she's sick of hearing about it, even though she tells me she's not and that's what friends are for. I feel bad tho for always venting about it to her, but she's the one that I feel most support and sympathy from. She seems to "get it" the most out of everyone, but yet no one truly understands if they don't have IC. And I also think some (my husband) are sick of hearing about it and every time I say something, he just responds by saying "Go to the doctor again. Nothing is going to change if you don't go again." That makes me so angry because I tell him I just went and the doctor is out of ideas, as I've tried everything. It's now at the point that it's a lifestyle change that is the only thing that will take the pain away. So then I feel like I shouldn't and don't want to talk about it with him, and I don't feel much support or sympathy from him, which is what I need. Every time we have sex I end up having a terrible flare a day or two later, which can last a couple days, weeks, or even months. I hate that this negative feeling is now associated with sex as I'm now hesitant to ever do it! For some reason, when I'm initially turned on it causes me pain too. It goes away then and I don't really have pain while we actually have sex...just after. Not sure if initial pain like that has anything to do with IC or not. I've been married for almost 6 months and feel like I should be having sex all the time and whatnot, and I want to, but yet I can't because of this stupid disease. The longest we go without doing it is usually 2-3 weeks, but I still feel like that's not good enough. I'm scared that he's going to get sick of that and find someone else to satisfy him. I've mentioned this fear to him and of course he said he promises he never would. Still hate feeling like I'm 90, when I'm actually 24 and just married and should be doing these things.

    My family doesn't understand it. They just think I'm always finding things wrong it me and just say "it's always something with you" and tell me I google too much and convince myself that I have all these problems. I come from a "you're tough, suck it up" type of family, so they aren't too understanding or supportive or sympathetic about this, at least so far. I then tell them that this isn't something I convinced myself I have, it's something that has been proven and diagnosed by the doctor after the cysto/hydro procedure. I have the pictures to prove that I have bladder problems!

    Anyway, sorry for the rant, but I just don't know what to do and I cry every day about this. I am losing faith and starting not to care about what happens to me. This disease is literally trying to take everything that I love away from me...and I can't handle it.

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  • jen74
    replied
    Yes, it is very understandable to be angry when dealing with a chronic painful disease. I even often ask myself why is it that you got bad people out there( gang bangers who kill people) and they seem to walk through life without suffering, yet take a good person and they have been afflicted with severe pain and suffereing. It just seems so unfair.

    Mary, you are right, most healthy people out there have no understanding when it comes to chronic illness. Our society does not understand nor accept chronic illness, and that goes for most doctors too from what I Have experienced. It really sucks. What is worse is that doctors do not even know what causes diseases like IC nor do they even know how to treat us since this is such an individualized disease.

    I have a good friend who went through liver surgery to remove a parasitic cyst from her liver last year. They ended up having to take her right lobe of her liver. She had a very tough recovery. She also has IC. Well due to the surgery she had complications, she developed a 4 inch bleeding duodenal ulcer and an abcess. It took her about a year to recover from this surgery. She actually told me that she would do that all over again in a heart beat rather than have or deal with IC! I have talked to a lot of women with IC that feel the same way. I have quite a few other health issues and I will say my IC pain is the worst of all of them.

    So yes, it is normal to be angry....

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  • kadi
    replied
    Yeah, sometimes it gets to me, even though it's been 9 years with it.
    Lately, I've found myself giving the finger to the TV set when an ad for something particularly delicious and very bad for IC comes on.
    Strangely enough, I feel better when I do that. Glad no one sees me, but the cat.

    I've not had much success with therapists understanding IC.

    One therapist told me that when I "got over" my IC, I should consider colonics. That just made me angry, but made my dad laugh really hard saying,
    "I could have told you you were full of s*** for free." Uh, that was the last appointment with that therapist.

    One therapist told me she thought it was "interesting" that I used the phrase p***** off when I was angry, because "well, you have a
    bladder condition". "Don't you think it's "interesting" you used that choice of words?" (Um, no, I think your insightful comment makes you an idiot. And that was the last session with her.)

    The last one I saw, I asked her up front, if we could do sessions by phone or skype if I was flaring & couldn't make the 45 minute drive to her office in rush hour traffic. She said, "ok, as long as it doesn't happen too often." Well, the one time I asked her to do it (in a 3 month period), she said, "Oh, sorry, your insurance doesn't cover phone sessions, so you would have to pay full price." Uh, that's $150 for 50 minutes. (Ok, what if I cancel instead?) "Oh, sorry, you have to cancel 48 hours in advance. Do you think you can do that?" Uh, no. I don't know that far in advance and by the way, it's kind of creepy that you will make $20 from me and $86 from my insurance if I'm well & can come to the session, but if I'm too sick to come, you'll make more. "Oh, ok, we'll have to find something we both find fair." And after 2 more appointments she hadn't figured out what that was, so that ended that.

    I did have some very excellent help from pastoral counseling with the minister at my church, great support from a Stephen Minister (a trained volunteer who came once a week to talk & pray with me) from my church, and really amazing support and coaching by phone from a medical social worker, and I still, 8 years later, use the strategies he taught me. What they all had in common was that they all researched IC, they all saw me as having a physical illness - but overall competent, and I could feel that they all really cared.

    I guess, the main thing with counseling, is to find someone willing to learn about IC and willing to be flexible. It may take a little time to find that therapist or counselor.

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  • Mary381
    replied
    Angry??? Hell yes!!! I have been at this a long time and I am just worn out sometimes. I work in neuro rehab and I see so many people struggling harder than I am so I try really really hard to keep things in perspective to not think all worst case scenario sorry for myself and sometimes I do well. I try to focus on my God and my faith and believe that He will carry me through. But sometimes, more oftne than not lately, I am MAD AS HELL!! I am angry. I am angry at how this has affected my husband, my kids and my life, my body. I hate the pills, the diet, the weight gain from the meds, the constant Dr apts from various other pelvic issues. I get overwhelmed with fear and anger thinking that this is my life and I am not even quite 30 yet. NOBODY gets it. I have tried to explain it to some people but nobody gets it and they end up saying the wrong thing and I end up ****** bc I have a short fuse because I have been in pain for so long and because it is such a personal issue its hard to tell a lot of people so I suffer alone. a lot. So, do I get angry? Yeah, I do.

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  • Nawee1979
    replied
    Yes I understand too. My mom doesn't get it. Why do you have so many problems. I hate that. It ****** me off! I have IC, VV, PFD, Depression, Etc...Etc and I have been in the hostipal more times then I can count! If I had to pick between my depression and my IC, I would totally pick my depression. Because at least with depression I can get out and be around people and not be on any kind of special diet. I miss bike riding, swimming, running all those things that make me happy. I mean I do yoga and acupuncture. Its ok but it wouldn't be my first choice. I hate being on meds, And the thought of catheterizing Scaries me half to death! And I'm learning that Next week! Yuk Yuk Yuk! I Hate This Disease! Hate It! Why Us! It has turned my life upside down! I get so depressed and cry!

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