Feeling Down!

[kkem]

How do you all deal with this horrible disease emotionally? I was diagnosed in late Aug. and have been on Elmiron and bladder instills since then and of course, the diet. I really am doing so much better than I was. But when I think about having to deal with this for the rest of my life, I get really down sometimes. When I talk to my husband about it, he gets angry with me and tells me that I am SO negative and that I don't have the right to feel sorry for myself when so many people have cancer, etc. Well, he doesn't know how this feels. I was such a happy, healthy person before all of this started just because my regular doctor told me to see a urologist to check out the microscopic blood in my urine. And of course, she decided to do a cysto and told me it would be a piece of cake. Well, it wasn't and it gave me an infection and then all of this pain started and never went away. I just want to have my life back. I don't mind giving up some foods, but I am so afraid to eat anything, especially in a restaurant. I want to be able to travel again and play concerts internationally like I did before. My life was so wonderful until these damned urologists screwed me up and then acted like I was crazy when I kept telling them I was in pain! This is SO frustrating. Sometimes I just cry and throw things. My husband has moved out of our bedroom because of my "temper tantrums". I just think this is so unfair. I guess I have been terribly spoiled. I already went through a bout of squamous cell oral cancer thirteen years ago.

[ICNDonna]

Have you talked with a professional counselor. It might help you deal with your condition. :grouphug:

Donna

[lisabar36]

Hello, I am sorry about how your feeling. I know what alot of those feelings are like, I went through alot myself. Don't get me wrong, I still have my not so good days, but talking to someone is really a GREAT idea!! It helps relieve alot of what you hold inside and they are professionally trained to help. I did not know one person with IC until I joined this site, so I felt alone. This site helped me a lot, along with researching everything I could about IC and knowing all my options. I was diagnosed in 1999, I have come to terms this is my life, and I have to do the best I can with it, and thats what I do, but yes it took me a long time to get to this point. Most of the time I feel encouraged more then discouraged now and the reason for that is my doctor, my doctor is ALWAYS researching things and offering me new things to try, so I consider that a blessing in my life! Even if they don't work, I know someone wants to help me and that alone takes alot of stress away. I think a doctor that truly understands IC is so important. I have seen many! Many have said theres not much I can do, then I find another. I haven't even tried all the meds yet. Out of all of them so far Elavil is what helps me the most. It took me years to find the right med combo and yes that gets very frustrating, but years was worth it to me to get my symptoms under control to the best that I could with the least amount of pain I have to live with. I still have pain, but the meds do help. I tried going off Elavil once and my symptoms came back full force. I am also not going to give up hope that something new I try will help me more. I went to therapy several different times. I have had many cries, and years of depression over this, and I wish there was something I can say to make you feel better. It just takes time and the more support you have, the better you will handle things. Also there are alot of treatment options. I remember feeling like my life was over. Hang in there.

[HeatherP]

Sometimes it just sucks.
I am really sorry your husband isn't more supportive.
I cry a lot to my husband and get hugs from him and sometimes I don't know what I'd do without his support.
I am sure it is hard for them too, but not as hard as it is for us.

[angelasheart]

Hi KKem...I am newly diagnosed also and have been doing my own share of crying and tantrums. My husband tries to understand, but he gets so upset because he feels he can't do anything to help me. I have only been married a little over a year and I have even felt so bad at times that I told him to go get a new wife who is healthy and doesn't have all these problems. I bottomed out!!! I now see a counselor and although they don't have all the answers it is nice to talk to someone who can listen without judging and offers some ways to deal with the emotions. I know this illness sucks, but I am trying not to let it control my life. If you want to talk feel free to private message me as we seem to have the same issues.

Angela

[Snowden1]

kkem,
I feel much like you do and posted it today in "no cure" section.
Teresa

[kkem]

Hi KKem...I am newly diagnosed also and have been doing my own share of crying and tantrums. My husband tries to understand, but he gets so upset because he feels he can't do anything to help me. I have only been married a little over a year and I have even felt so bad at times that I told him to go get a new wife who is healthy and doesn't have all these problems. I bottomed out!!! I now see a counselor and although they don't have all the answers it is nice to talk to someone who can listen without judging and offers some ways to deal with the emotions. I know this illness sucks, but I am trying not to let it control my life. If you want to talk feel free to private message me as we seem to have the same issues.

Angela

I am new to this website. How do we private message someone?

[kkem]

Hello, I am sorry about how your feeling. I know what alot of those feelings are like, I went through alot myself. Don't get me wrong, I still have my not so good days, but talking to someone is really a GREAT idea!! It helps relieve alot of what you hold inside and they are professionally trained to help. I did not know one person with IC until I joined this site, so I felt alone. This site helped me a lot, along with researching everything I could about IC and knowing all my options. I was diagnosed in 1999, I have come to terms this is my life, and I have to do the best I can with it, and thats what I do, but yes it took me a long time to get to this point. Most of the time I feel encouraged more then discouraged now and the reason for that is my doctor, my doctor is ALWAYS researching things and offering me new things to try, so I consider that a blessing in my life! Even if they don't work, I know someone wants to help me and that alone takes alot of stress away. I think a doctor that truly understands IC is so important. I have seen many! Many have said theres not much I can do, then I find another. I haven't even tried all the meds yet. Out of all of them so far Elavil is what helps me the most. It took me years to find the right med combo and yes that gets very frustrating, but years was worth it to me to get my symptoms under control to the best that I could with the least amount of pain I have to live with. I still have pain, but the meds do help. I tried going off Elavil once and my symptoms came back full force. I am also not going to give up hope that something new I try will help me more. I went to therapy several different times. I have had many cries, and years of depression over this, and I wish there was something I can say to make you feel better. It just takes time and the more support you have, the better you will handle things. Also there are alot of treatment options. I remember feeling like my life was over. Hang in there.

I tried Elavil and couldn't take it. Made me feel like a zombie. Tried a lower dose and it made me very depressed and I cried ALL the time! Also, went to a highly recommended psychologist and he said if he were me, he would be ****** off too! He said he didn't think therapy would help me. He offered relaxation therapy, but I have already been working with a hypnotist for pain and learned self-hypnosis.

[musiclover]

I know what you mean. I go through times of frustration and feeling down. Most of all frustration. It's strange to be perfectly normal one week, then the next all of a sudden you have IC and can't get rid of it. I felt totally normal a year ago. I think it is a good idea to talk to a counselor. I did that before I had IC when I was dealing with some stressful situations and it helped me a lot. But you have to find the right one. I went through about three until I found the right person who really helped me. I also joined a meditation group and did their 6 week class on how to meditate. I don't always go to the meetings, but the 6 week class taught me so much and so I practice it a lot at home to help me to feel more grounded and live in the moment.

I really want to scream sometimes because my friends and family don't truly understand what I'm going through. They just think I have to pee more than normal, but it is much more than that. My boyfriend knows because he sees me having pain and how going to the bathroom constantly affects my life. It's hard to plan things around this. I don't know how I'll feel in a week or two weeks and it's really hard not knowing if I'll ever feel better. It could be like this for years, or forever. But I keep having hope that something will help me in the long run. A lot of these meds take forever to work, and they have to combat months of chronic inflammation and sensitized nerves. And on the bright side, you'll notice on these boards that the people who have been on the boards for a long time seem to have it down. They know what works for them and they don't struggle every day like we do. So keep hope alive. I think things will work out for us for the better.

[Bekah79]

:grouphug::pray::angel: I'm so sorry that your husband isn't more understanding. I hope things get better for you real soon.

Keep The Faith:pray:

[angelasheart]

Kkem...I sent you a private message. Just hit on the private message link where you log in and it should take you to it.

Angela

[angelasheart]

Also if you hit on my name up there is will prompt you if you want to send a private message.

[maryla]

How do you all deal with this horrible disease emotionally? I was diagnosed in late Aug. and have been on Elmiron and bladder instills since then and of course, the diet. I really am doing so much better than I was. But when I think about having to deal with this for the rest of my life, I get really down sometimes. When I talk to my husband about it, he gets angry with me and tells me that I am SO negative and that I don't have the right to feel sorry for myself when so many people have cancer, etc. Well, he doesn't know how this feels. I was such a happy, healthy person before all of this started just because my regular doctor told me to see a urologist to check out the microscopic blood in my urine. And of course, she decided to do a cysto and told me it would be a piece of cake. Well, it wasn't and it gave me an infection and then all of this pain started and never went away. I just want to have my life back. I don't mind giving up some foods, but I am so afraid to eat anything, especially in a restaurant. I want to be able to travel again and play concerts internationally like I did before. My life was so wonderful until these damned urologists screwed me up and then acted like I was crazy when I kept telling them I was in pain! This is SO frustrating. Sometimes I just cry and throw things. My husband has moved out of our bedroom because of my "temper tantrums". I just think this is so unfair. I guess I have been terribly spoiled. I already went through a bout of squamous cell oral cancer thirteen years ago.


KKem,

It is very normal to go through a grieving process with this disease as well as others.
I was diagnoised 5 yrs ago and still there's times when I have to just simply give in to my loses. And just when I feel that I have finally accepted my "new" life yet another lose rears it's ugly head.

The pain is also viscreal pain which is directly related to our emotions.
It's also perfectly normal with IC to see a counselor. I saw one for a while and at times I felt like I was counseling her. I found another one, who I just loved and our ins. will not pay for his services. So, I stopped going because there is no way we could afford him.
It is also very important to have a support system. Someone that you can rant and rave with who doesn't take it personal. What I have found is that women "have to talk everything to death"
It sounds like your husband is scarred. I know that there is times where my husband gets really upset and I think that his angry is directed at me and he tells me, "I'm not angry with you, baby, I'm angry at this disease" Men are very logical thinkers and want to fix us. So, when they cannot, they get angry. I have to remember too that he is also going through a grieving process. Our life as we once knew it has changed. And most of us hate change!
I ask him a lot if he is talking to someone about our IC and he tells me he talks about it with a lot of his friends.

I realized early on that I was shutting my husband out. We had just gotten married a few months before my d'x and I was just like someone else here that told her husband to go find someone else. He used to really freak when he saw me cry and he told me he felt so helpless that he just couldn't do anything to ease my pain. Now I allow him to comfort me. He cleans the tub and runs my baths. He goes to 95% of my uro appointments. He does a lot of laundry. Grocery shopping. Sometimes it's just a matter of holding me. And he always asks, "what can I do for you baby"? He is my rock! I don't know what I would do without him!

I also get "very" frustrated when trying a new med and think "this is going to do it this time". Only to have yet another failure.

By the way there is 5 stages of the grief process. Which are: Denial, anger, bargaining, depression, and acceptance. One can also vacillate between them. Thats the way my process is going. It's like I said earlier. Just when I think I have fully accepted my life as it is now, something else pops up.


I pray things do get better for you physically and emotionally. Keep us posted.

hugs and blessings

[Snowden1]

kkem,
I also had this reaction to Elavil. I couldn't stop crying either - I don't know what that was about, but my heart was also racing. I get frusterated when I can't take a med that may help me.
Teresa

[Jereme]

Going through an emotional roller coaster is unfortunately part of the healing process. The thing that helps me the most is my daily mindfulness practice. through mindfulness you can cultivate acceptance of thoughts, feeling and body sensations. It also reminds us that right now is where we have to live our lives. If we can't accept right now no matter how it feels then we will never get to anywhere else. I also think getting a journal and writing in it really helps. Its a good venting tool and it also helps to look back sometimes to see how you are progressing. For me it shows that I have good days and days that are not so good. When I'm having one of those bad days I know that it will pass. Feelings are like the weather, they come and go if you let them. We are all very strong and have all we need inside to survive anything. Its just sometimes tought to tap into that when things aren't going the way we had planned. Jon Kabat-Zinn has done a lot with chronic illness sufferers and there are stress reduction classes and mindfulness training available in many clinics around the country based on his stress reduction clinic in Mass Medical Center. I'd suggest looking into that. It certainly can't hurt and it is something that very well might help.

[itsabaddream]

KKEM- I feel like you are telling my life story. My husband has post traumatic stress disorder from being in the war in iraq and its hard for him to support me when he is going through so much too. I totally understand what you are going through.
PM me an dI will telll you more

[kkem]

How do I PM someone? New to this.
Also, what is vesicare??

[TexasHoney]

:grouphug: I hope things turn around for you ASAP

Hang In There

[kkem]

I am also sorry that things are so difficult for you!! I notice that you only tried Elmiron for two months. My doctor says that it takes at least 8 months of trying in order to determine whether or not it will really work for you.