would you tell your doc you were crazy?

[waterflow]

I see my Uro tomorrow and need to talk to him about doing the instills at home but still keep going there once a week. I know this sounds crazy but I have two minds. Have had for a few years now. My normal mind and then the "mind" that is trying to make it so I can survive. It won't let me give up going there each week. Everything has to stay the same. i don't think about having the heparin done when I go (or here). I go to visit at the uro's. Plus the only way to survive for me is to forget everthing that has happened. I've been crying over this since last week and want to tell him but not sure if I should. He has always understood my crazy way of thinking in the past. I don't hear a voice it's like your "inner thoughts" mind. Sound

[humpieumpumkin]

I told my uro I was losing it. I said i'm grasping on to my life by the fingernails, and unless he treated me I simply would lose the will to live. I also told him that I hate how my IC won't kill me, but it makes me want to die. He didn't help me, so I went to my gp for wellbutrin. Its helping I'm also seeking another opinion, because this tip-toe through the tulips approach is driving me nuts. I want to be helped, and I need to be treated aggressively. I hope this helps, this is my opinion. Don't feel like your the only one, i'm nuts too!

Erika




BTW I cry every time I see my uro. It drives him nuts...Maybe his is letting me suffer because I bug him-LOL

[tigger_gal]

I told my doc not my uro, I was having a hard time coping.. he prescribed me with weebutrinxl. that was some time ago. I do touch base with him and tell him how I am doing, he also knows the stress I am under.

[jen74]

You are so not alone. I totally feel for you. I have been sick with this for about 11 months so far, just dx two months ago though actually. I also have other health issues(stomach) that are debilitating as well. This on top of all that, I am tired already of it all.

I actually go to bed praying that I wont wake up some nights. I am a true believer in quality of life, and so far mine has gone out the window. I break down and cry almost everyday. I honestly am not sure how much more I can handle.

I understand your frustration with the doctors because I have been there. I cant tell you how many idiot doctors I have seen in the last few years since becoming sick. I dont trust ANY doctors or health professionals anymore after what I have been through. Since getting sick with my stomach issues and other health issues three and half years ago, it took nearly two years, and going to 6 different GI specialists to get an accurate Dx. I was told I had IBS,which I did not, I was told I had scleroderma, which I did not, also was told I had lupus three years ago by my one PCP, which I did not have, also was told I had severe barrett's esophagus(a pre-cancerous condition) which later found out I did not have and the list can go on and on. This is why I unfortunately have no faith in the medical profession anymore.

I feel like I am always second guessing the doctors opinions, even my husband says he does not trust them after seeing what they put me through needlessly. I mean a doctor has no right to tell a patient they likely have all these serious diseases when you are not for certain.

I am suppose to do my first bladder instill tomorrow, and I have been second guessing whether I should or not all day. It is like, I know this urogyne I see says that I should, and that they help, but I am still skeptical. I worry about risk of infection, risk of complications or reactions etc. And now that I am coming down with something, I feel even worse. Just know you are not alone. Big Hugs,
Jen

[meme]

I think that IC causes us all to have "two minds". We have to learn to cope with this somehow. I know I'm not the same person as I normally am when I get a flare. Its like night and day between the personalities. I have this happy, outgoing, wanting to try new things, gogogo type when I'm not having a flare, then this icky, depressed, just want to lock myself up and not see or do anything type when I flare. It's just my way of coping with it. I'm also very much into routine. I like things to stay the same b/c then I can manage them. I know how things will affect me if I just keep w/ the same system everyday. Throw something else in the loop and it just messes me all up!

[ponytail]

I totally agree with you all. When I was very ill I actually thought I was dying and there was nobody in the medical profession to help me as they didn't believe how ill I was. I think I went into total shock and believe I regressed slightly from the shock of it all. I went from being a young adult about to take on the world to a stay at home depressive. I have not had a proper relationship since then and I find every day stresses very difficult to cope with. I am 40 now and all my friends seem mature with families of their own and have the ability to cope and manage their lives. I put on a party face for the world but actually I don't think I have grown up in the way I should have. It is very difficult to explain. I think your/our craziness is because it is a very solitary illness and anyway ongoing pain makes you crazy. I think that is perfectly natural and understandable. Waterflow, you also mention that you need to forget everything that has happened. I have huge gaps in my long-term memory. My friends will say do you remember when....and I think, no I don't. I think that must be the body's natural defence - needing to forget pain. And I don't really mind as I need to look forward now. All I can say is, take care and be nice to yourself Waterflow as you deserve it.

[traceann]

Count me in as well - when I was at my worst, I had to have my routine the same, I didn't like loud noises, or being in a loud/crowded place etc. All I wanted to do after work was get home to my "Sanctuary" as I called it, and into my jammie pants and a sweatshirt, lol. And heaven forbid anyone or anything that messed up MY routine! Yikes!

I think you should definitely talk to your doctor about it - like I've said before, to treat us effectively (the good ones, lol) they need to know what's going on with us physically AND mentally. We're the whole package - not just a body etc.

I would say I want to try this at home, but I would like to still come into the office for a treatment here and there (or whatever, insert your words here, lol) to touch base and make sure I am doing this correctly as I am not sure I am ready to TOTALLY wing it on my own. It can be daunting to do yourself at first (then you become a pro, lol) and I am sure he'd understand that completely, because it sounds like you have a really wonderful doc!!!!

That's just my 2 cents worth, though!

[waterflow]

Thank you everyone!! It's nice to know I'm not loonie in the head after all. I'm not the same person now as I was in the beginning of the IC but then I think about everything I went through. Some doctors/nurses but mostly family. Had no support through this except my Uro. I don't really go to my GP anymore. My Uro has helped me with everything else then just the bladder.

I will bring it up with him some how gracefully tomorrow. Maybe while he is working on doing the Lidocaine and can tell him I have been having a second mind for a few years now and it just really can not give up going. I just never know when to start the topic. I know one reason why my second mind thinks this is becasue I won't let any of my family know about me being able to do the heparin now. i went through to much with everthing else (treatments) to go throug it again.

Thanks again for the help.

[Briza]

I asked the question

LOL I have asked my therapist if I'm crazy and he assured me that crazy people don't know that they're crazy and it wouldn't even occur to them to ask that question. He says he prefers neurotic to crazy... and without us all having a neurosis or two life would be boring For some neurotic reason that was comforting to me
Hope your appt goes well tomorrow

[L. Thomas]

Being sick will make you sick. I would tell my urogyn or anyone that would listen that IC is making me more than just sick with IC...there is more than likely something that will fix depression, anxiety, etc..where as IC is another story. No need to be bothered by something that has effective treatment.

[Trishann]

I don't think you are crazy at all. I know that our bodies are sick and that will cause you to not be yourself. I am not the same either Waterflow and working around your illness can be a challenge. And sometimes you just don't feel up to a challenge, but that is ok, I know we all have our days of it.

I hope you do talk with your uro. You sound comfortable with that doctor and that would be the doctor I would talk to, the one I feel comfortable with.

Sending hugs, Trishann

[leelee88]

Waterflow...
Nope you are not crazy I have those same thoughts..One day im fine and happy the next day I am in pain and I just wont everyone to leave me alone and let me deal with my pain..I still cant get any pain meds..I think thats one reason I am going crazy...