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How many lost family due to the IC?

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  • #16
    For the people that can't eat pizza because of the sauce. I find that pizza is excellent without sauce. In fact my husband and some of my friends actually prefer it over the pizza with sauce. A friend of mine invited me to a little party they were having in which they ordered pizza and she ordered me a special pizza for myself.

    I do find that some people that don't understand the condition get frustrated. Especially if they make something and they tell me to try it. Then I ask what is in it and explain I can't eat that because it has tomatoes or something acidic.

    I am fortunate my immediate family understands that it isn't all in my head and that stress and things I eat can cause me pain.

    Good luck everyone and happy no sauce pizza cooking/ordering

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    • #17
      yeah

      My family has always been there for me. For that I am most blessed. Though they have come up with a gazillion of their own, reasons, and diagnosis... they have always been supportive and have maintained their faith and trust in me..
      Friends on the other hand. They just thought I was making excuses not to hang out with them. Blame it on me. Blame it on my boyfriend at the time. Blame it on anything other than the fact.. that I feel like crap all the time. So, I have lost some very close friend in which WERE like family to me. But whom, after decades of my suffering and lack of diagnosis.. just assumed I was a spoiled brat.. whom was a severe hypochondriac. So.. Yeah.. I hope no one else suffers this miserable wrath... and I wish you all the love the world could ever hope to offer!!!
      Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

      Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

      Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.

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      • #18
        Funny I just noticed this thread tonight, because I was just going to post something about family not understanding. No, I haven't lost any family members or friends since all this IC and VV started 3.5 yrs ago, but they do prefer it when I'm not having symptoms bad enough to mention, and my symptoms had been really well under control with my meds and diet and I even had a 2 month remission recently. But my mom came for a visit during March when this huge flare like I haven't experienced in a while started, and I've missed a lot of work and got referred to a pain clinic by my gyn and my mom was here and she saw all the meds I have on hand for flares and I think she kinda freaked. So today I called her to tell her I wasn't getting relief, even with the change in pain med, and I've been having to take all my meds, and that's making me really tired and sleepy and still hurting, and she says I'm going to end up in rehab, lose my job, and have no way to pay for it, because of missing so much work. I know better than to call family to talk about these things. Note to self...don't call family when I'm feeling bad.

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        • #19
          I've lost family, friends, most everything....

          and I found this letter on several other web sites. I actually sent it to some of my friends....It does a wonderful job explaining what we go through.....I hope it will help some of you as well........

          Its hard to try to explain just how having chronic pain makes us the sufferers feel - to our families and friends.

          The following letter I think is one that should be printed out and left for others to read, it is clear and concise and explains how a sufferer feels on a daily basis. Doing this face to face can be very emotional and not easy to do.

          LETTER TO PEOPLE WITHOUT CHRONIC PAIN:

          Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

          In the spirit of informing those who wish to understand.
          These are the things that I would like you to understand about me before you judge me...

          Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body. I still worry about school, my family, my friends, and most of the time I'd still like to hear you talk about yours, too.

          Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy! I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

          Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

          Please repeat the above paragraph substituting, "sitting", "walking", "thinking", concentrating, "being sociable" and so on ... it applies to everything. That's what chronic pain does to you.

          Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this! If you want me to do something, then ask if I can.

          In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.

          Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do.

          Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine.

          Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

          Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

          If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower.

          If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

          If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.

          Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

          In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
          I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.
          _________________
          Thank You all so much to everyone here for all your sharing, caring and support!
          < My "Bear"
          CurrentTreatments:
          Started herbal teas 6/2/06 Marshmallow root, comfrey root, and catnip. 6/25/06 added Mullein Leaf Powder to tea.
          IC Diet
          Hydroxyzine 50 or 100mg at night (Is restarted)
          Zoloft 100mg 4/8/07 (Is restarted)
          Klonopin 1/2 mg 4 X Day (started 3/17/07)
          Past Treatments: Amitriptyline, Neurontin, Hytrin, Heparin instills (was Dc'd after 5 weekly tx's due to severe urethritis), Superior hypogastric plexus block, E-stim, Elmiron instills (started 4/18/06-Dc'd 5/30/06 due to severe urethritis/infection requiring foley cath @ home 4 days), Oxycontin (oxycodone) (4/18/06)-pain (Dc'd 5/31/06), Levsin S/L (hyoscyamine) (3/17/06)-antispasmotic (Dc'd 5/31/06), Elmiron (1/24/06)-(Dc'd 6/25/06), Prelief, Zanaflex 4mg for PFD (Dc'd 10/1/06), CystaQ 1 in am & 1 in pm with food(started 5/12/06-increased to 2 in am & 1 in pm 9/20/06---Dc'd 10/18/06), Lyrica (started 10/26/06 up to 600 mg-Dc'd 12/4/06 due to urinary retention), Vicodin (hydrocodone) ES PRN for pain (Dc'd 1/4/07); Cymbalta 30mg (start 1/17/07) up to 60mg in am (1/26/07) (D/c'd 3/17/07); Ativan 1mg(Lorazepam)- PRN Anxiety (changed to Klonopin 1/2mg 4Xday 3/17/07); Pyridium (phenazopyridine) PRN-bladder analgesic; MSM (6/12/06) 1000mg after breakfast & dinner (Dc'd 3/15/07); Acidophilus (Natrol) 100mg. 1 capsule 1/2 hour before breakfast (5/20/06) (Dc'd 3/17/07)

          Added BACK in - Atarax (hydroxyzine) (started 4/6/06 Dc'd 5/31/06) Restart 50mg at night 8/18/06, up to 100mg at night 1/4/07. Zoloft 100mg-Depression (Dc'd 7/25/06) Restart 4/8/07) 100mg.
          Dx'd: Dec 05 (Positive PST in November and positive cystoscopy in Dec) Symptoms: Pain, frequency, urgency & retention


          My Myspace page - http://www.myspace.com/42620225

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          • #20
            Thanks Chrissy for that letter. I copied it and sent it in an e-mail to my daughter n' law. She can't understand why sometimes I'm just not up to babysitting my grandchildren or running errands for HER, etc. As much as I love being with my grandchildren, some days I just can't do it for a long period of time, and she takes it to be that I just don't want to help her out. Gosh, I would give anything to be around them all the time and take them all the time, but they are only 4 and 8mo. old and somedays it's just too difficult, having to hold the 8mo. old all the time, is just too much on me sometimes. It kills me more then her and I wish she would understand that. So thank you for the letter, I wonder how she'll take it...

            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!

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            • #21
              Yes - that letter is very cool. I have been blassed with a afmily who do still love me - but I have lost friends over the years - lost the only man I love because my being sick all the time was unapprealing to him, ... when we are open with people about how we feel sometimes we can just kick ourselves for years over it - but at the same time, I know that life is so much about relationships - and I want to do everything I can to try and make things work. My mom has been great and honest with me about how hard it is for "normal" people to understand how those of us who have pain feel - how frustrating it can be to want to make us feel better, how hard it is to watch someone go through something like this ... so it is hard on both sides I think. And those of us with cronic pain need to be merciful to the "others" too and just remember that some of them are trying even if it is hard. I can't really imagine how hard it would be to watch someone I love going through teeth-grinding pain all the time ... I for one thank God that I have not been asked to be the "normal" one, even though I can hardly stand this pain some days ... I think I would rather have the tangible pain than watch someone else with something that I would never understand.
              " If I really cared as I thought I did, about the sorrows of the world, I should not have been so overwhelmed when my own sorrow came." ~ CS Lewis

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              • #22
                lost husband (may have been a good thing)

                I lost my ex husband. I could not satisfy him sexually because of the after pain from sex so he started with those phone sex calls. I could have handled it if "that's what did it for him" but he felt the need to lie about it. My fiance seems much more understanding but often will bring up how much we used to do it before my current flare. I went off on him last week, asking him how he would feel if he was in a wheel chair and all I did was talk about how we used to go hiking in the woods. I am not sure if I got my point across but at the time he seemed to understand. He leaves me alone when I am in severe pain and just sits and worries. But he doesn't get that if I have a big day coming up I cant take the chance of having a major flare from having sex.
                My family drives me nuts because they focus on how much pain medication I take, they don't realize that the more they focus the more I stress and the more I flare. My nephews wife is one of the lucky one's that has mild IC and doesn't require anything more than an occasional round of elmiron and maybe some pyridium. This totally changes my ranking on the drug addict watch. I know they mean well, but it makes me nuts.
                I was born with one ureta not attached to it's kidney, I've been poked and prodded for so long. I never had "private" parts. I had constant infections and took low dose preventive antibiotics into my teens.

                DX with IC July 1993 after seeing 3 different Uro's and finally switching Primary care doctors and affiliated hospitals.


                I have 2 beautiful daughters, the oldest has been in heaven since she was 14 when she was hit by a car The youngest is 20 now. She has had one UTI. She went into complete panic that she would end up like me. Now she has some idea of what the pain is like. Poor kid has been forced to know where every bathroom in Disney World is.

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                • #23
                  I have lost my husband, too.

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                  • #24
                    family losses

                    My entire family turned against me after IC symptoms appeared. They started to believe the doctors that I was imagining the pain even tho I had no background of having done this. Now some of them want to come around and say "Oh it was a real disease" how about that. well you need them when you are suffering. I did all the investigating finding out what I had on my own. There was no internet in 1992 so I could not even connect with other people with IC. I have heard stories of family members getting IC but as of now no one in my family has it. My 88 year old mother is in excellent health. I know you can feel like you are only in the world with it sometimes; I have been in remission for 7 years but I do not know that I will ever get over the psychological effects and how people who I thought would be there for me dismissed me. I feel for everyone with any kind of chronic 24/7 pain that goes ignored by the medical community. If I heard "Well you look the same" I thought I would scream.

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                    • #25
                      I'm sorry to hear that Mayray about your family. I know what you mean though, no one seems to understand this disease unless you have it because they have never heard of it before. They seem to just think, oh so you have to pee alot, that's not so bad. They don't understand all the pain and suffering that goes along with it. I was diagnosed in 1994 so I had no knowledge of the internet either. It wasn't until recently that I discovered this sight and it has helped me so much. I wish I would have had it a long time ago. I'm happy to hear though that you have been in remission for 7 years! That's wonderful, do you have any idea how you got into remission? I've never had a remission in 13 years, right now I've been in a horrible 7 week long flare. So I'm happy for you about that, and I understand about it being hard for you to get over remembering how the family treated you when you were first diagnosed, when you needed them the most.

                      Take care and I hope you stay in remission forever!
                      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


                      • #26
                        I didn't lose my whole family, but the relationships that are left are pretty darn strained. My husband has been a rock through it all, soooo understanding and loving.
                        My family of origin, however, is like some of the others have posted. "Sure you can eat that! A little ketchup never hurt anyone", etc, etc.
                        Get - togethers at my parent's house always revolve around food. My mother refuses to believe that I can't eat the food anymore, so I have spent way too many "happy times" watching everyone else eat. I just refuse to go anymore until my husband drags me.

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                        • #27
                          Some of my coworkers used to call me peepee.I used to just ignore it.Some of them are having prostate problems now and getting up all night.They are asking me for advice now.One of them is retired now and I wont call him.You see when they start having problems they are not so quick to make fun of you anymore.Dont you just wish ic was contagious and you could give it to them for awhile?I have felt this way many times.
                          After reading all these posts I can tell you if there was anyway to transfer this disease over to the insurgence in Iraq, the war would be over very fast.You could count on that.
                          Regards,GoldSeals
                          54 year old male
                          Diagnosed with IC in 1994
                          Had symptoms since 1992
                          Three cystoscopies.One biopsy with hydrodistention.
                          This is what I have tried,Dmso cocktail,Elavil,Atarax,Hytrin,Detrol,Pyridium,Elmiron,Allegra,Augmenti n,Flomax,Ditrapan,Vesacare.
                          Sent urine samples about 10 years ago to the famous Dr Fugguzatto.Went through plenty of Dr's which took about 2 years for an IC diagnosis.I am considered having one of the worst IC conditions known to my doctors.
                          Thanks to reading the great info on this board I am presentally trying 3 more natural remedies.Msm,Glucosamine,and Quercetin

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                          • #28
                            You are not alone - You aren't the only one who has lost family

                            Waterflow,

                            I don't know exactly what "lost family" means, but I am assuming you family members didn't understand the chronic and terrible nature of IC and its related conditions, so you either cut off contact to protect your well being or they have rejected you because they have unrealistic expectations about your capabilities.

                            I have as little direct contact with my family as possible and sometimes can’t tolerate being around them so it has come down to no contact at all for periods. It is amazing to me that family could be the least understanding of all the people in ones life! Even if they don’t understand it would be nice if they just wouldn’t judge and attack me. Two years ago after living with severe IC for five years, I decided to let my family know the disabling limitations of IC. My mother and sister accused me of having a pity party. (IC has disabled me and I no longer work and rarely drive.) I just told them how my activities were limited and the extent of the disabling effects of the disease. I gave my mother a small book from the ICA regarding IC and pain – there was no response or comments after she read it.

                            For years, the family has participated in gossip about how I am not really sick just “crazy” and the IC is “all in my head” despite diagnosis from reknown doctors. They all talk about wanting to help but, when I need it they either are unavailable or they do step up and help then throw it back in my face. The fact plain and simple is my family will never understand, and currently it is best for me to limit our contact.

                            Just posting this makes me feel guilty because I seem to be a complainer, but all of my post is fact based and I didn’t want you to feel alone. I personally know other IC patients in the same boat. There are no appropriate words of comfort which will make your heart hurt less, but there are others of us who do know how you feel.

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                            Originally posted by waterflow View Post
                            All my friends are gone as well but that doesn't bother me much anymore. Got used to it after the first 3. Family is all there is in life and if you can't depend on them then who do you have? Guess I am the only one then who lost the family due to this. Glad I am the only one but now I wonder why me?

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