Im Sorry

[Shay]

Im sorry for the sound of this post but I have to be honest and vent to people who hopefully will understand. Im in a flare 'AGAIN' and Im at a place with this issue that Im through hoping for and looking for answers and trying things that DONT work and tired of keeping a positive attitude and pretending Im strong about it. What I need to do now is to try and figure out a way to accept the fact that this is my life and there is no cure and start trying to figure out some real coping skills instead of the coping method of believing that this will ever go away. Its hard for me to say that because Im not a negative person but Im thinking its time to be a realist. I dont want to discourage anyone else or send the message that there is no hope for them, but for me, Im done with hanging onto false hope. Im just sad that it has gotten to this and Im hurting and Im grieveing over the fact that I cant have a healthy body no matter how hard I try.

[Sally939]

Oh honey, I am sorry. Don't be sorry for needing to vent or share that is one of the reasons I think the site is here. Some of the things you said take me back to three years ago. I was very sad and agree and just in pain. I love/obsess over medical research. I read this entire site more than once and anything else I could find on the internet (not always accurate at all). My mom and boyfriend were sure I would get better (not that I would not have IC but that I would get out of that much pain and live a "normal life"). I kept telling them about all that I read and that they really could be wrong statistically. I thought they were holding on to unrealistic hope! You know what, they were right (I don't tell them that or they would get big heads :lmao:! I have had a hard time the last four years (not all IC) and I keep saying I was done fighting, I just can't do it anymore, I give up! My mom smiles and says that is just not you, you were born three months early and have been fighting and being pushy since then (she can be annoying at times LOL). Then she tells me to get over it and keep on going (not in a rude way that is just what she says about everything).

I think you are a bit right and a bit wrong. You do need to except you have IC and it is not going away. You need to grieve and that is not a fast process. But, you do need to fight!!!! Fight for your quality of life and be your own patient advocate! You need to keep trying new meds and new med combinations (it takes all my meds to make me feel better not just one of them). All it takes is just one med added to your meds to feel better. You also might need to follow a strict diet for now to get it all under control.

If you keep flaring and don't know why try keeping a notebook and see if you can find a pattern. It could be the smallest thing. For me dairy kills me and almost all ICers can have dairy (but I can have tomatos :smile tee).

Vent, scream, be mad, but please fight. Good Luck

[nottoc4]

There are so many combinations of treatments that help us,surely you can get some ideas from the members here. What have you tried and what do you take now?
Acceptance is tough but never give up hope.

[sailawaygrl]

Shay,
I can relate to where you are right now. I just re-read all the information I can find and realized that I have tried everything or I am already taking all that there is out there to fight this. I do think we have to have a greiving process. For the life that we no longer have and for the challenges we now face. I know what you mean about putting on the happy face. I don't know why, but I feel it is my "duty" to be optomistic about IC. I guess when you know there is no cure that is all you have to hold on to.

I know that I am so much better than I was two years ago but I want in my heart to be completely back to my pre-IC life. That is a hard thing to accept that I do have to watch what I do and eat and drink. I have to be careful not to do too much in one day or the next day I will suffer. I can only hope and pray that with time, I will be able to adjust my life and be happy with the life I have now. Not pre and post IC life, but just life. I do believe we can be happy and that there is a reason for this, that I have to believe otherwise there would be no reason to keep going. We will have our ups and downs but who doesn't?
I honestly don't have any answers for you, I just wanted you to know that I can understand what you are feeling. I hope in knowing that you are not alone, that someway will be of comfort.
I wish you better days soon.
Sandra

[ICNDonna]

Sometimes keeping a detailed diary of foods, drinks, pain levels, frequency --- include prescription and over the counter meds, and herbal remedies and supplements. Sometimes it's possible to find something totally unsuspected is causing you grief.

I hope you feel better very soon. I know it's frustrating.

Donna

[SharonA]

I live in a 60 year old body, but still have a 40 year old mind set. I get very aggravated that I can no longer do things I was physically able to do 20 years ago...like clean my house from top to bottom in one day. When I go past a mirror and look at myself, at times, I don't recognize the person looking back at me because I think of myself as that 40 year old woman I still think I should be. The woman I see in the mirror has sagging skin, less color in her cheeks, graying roots from her last hair coloring, tired looking eyes, wrinkles, flagging neck skin, and a woman with a few health issues that were no where to be found 20 years ago.

I bring the person in the mirror up because the person I am in my head needs to accept who she is today with all her changes and with IC. Yes, I want to still be that younger, healthier version of me, but it will not happen. I can not go back to what was, I have to make the best of what is. I have to remember to do what today's me needs to do to keep me moving and living a very good life.

This adjustment is not easy, nor can it be done all in one day (much like cleaning my house can no longer be done in one day), but it can be done. Don't give up on today's you and look forward to the person you can be tomorrow and tomorrow's tomorrow, etc.

Never give up on yourself... :)

(((Hugs)))...

[sailawaygrl]

Sharon,
I love what you said, that is how I feel. I am forty but still feel, well maybe 26. I was very happy at 26. I wasn't sick. I was newly remarried to a man I loved and still love deeply and we were a happy family. Now, my too young body doesn't work like it should and I feel so tired and I hurt everywhere all the time.

[Zygala87]

Grieveing is normal for anyone who comes down with a disease that appears at the time there is no cure for. We can always hope for a cure but research is slow. Don't be hard on yourself. Take things one day at a time. You might consider some counseling. It is a good way to vent and find some coping and guidance. It won't help IC but might help with you state of mind. When I first came down with IC it felt like a loss of a dear loved one. I was so depressed and angry. Now four years later, Elmiron two HYDros and being careful with the diet I am now able to cope. I've had many setbacks but they do pass. Almost everyone I know has some cross to bare. I guess IC is ours. It is a stinking rotten thing to deal with for sure. Vent here all you want, we care and understand for the most part. IC hits us all differently. Wishing you better days ahead. Hug, Ziggy

[Bekah79]

:grouphug: I wish I could help. I will pray for you.

[Smokey]

i agree i am turning 37 this year, i think ic has aged me. i was so happy at my 30th birthday and previous years. i got married at 28, then ic started after my birthday. ic has changed my life in lost of ways not only mentally,pysically and emotionally. i cant clean the house either in one day i have to do things in stages and pace myself too.

i do pray every day that they find a cure soon.:pray: