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I am really having a tough time today. For the most part in comparison to many with IC, I live an ok life but I still have a lot of bad days after almost 2 years of treament. I haven't really improved much at all. Now I am so scared about the mold issue and just feeling completely overwhelmed by all of this. I am thinking about giving up the treatment not that I think I will get better without it but just so I don't have any hope/disappointment anymore and I can grieve and move on to live like this. I just need to believe that I will be ok no matter what. I don't have unbearable or constant pain. I can walk around and exercise a bit and I work a a singer. I still can't have sex freely at all and that is just terrible but sometimes we are ok. The food issues are extremely liimiting but I guess I could live with them. I am not sure what I am asking but I just need help.
Dr brizman says I fit the clinical profile of otherrpeople who just take a really long time to break though but they do eventually. I am trying to hang oin to that. She said she is "almost" 100% sure I will get better. That is not very comforting to me today.
I have come a long way emotionally and spiritually and I work every day on appreciating life in the moment. But thiis is completely overwhelming me today and I don't know what to think.
Please, I would love some help to put things in perspective.
ps- please don't tell me to meditate!
also I am so sorry if i scare people. I just feel liek today- I have nowhere else to turn. I believe in this treatment. if you are having die off and seeing changes you will get there.
Deir, I am still here, too. I
Deir, I am still here, too. I don't know how long it will take, but I don't want to go back where I came from.
Huge hug!!! I don't really
Huge hug!!! I don't really know what to say, but I totally get your frustration! No one has a crystal ball and I can't tell you either that you will get better! I so have this fear that I won't get any better either. Like yo,u I can function pretty normally, but have never had a symptom free day! I do believe you will get there, but the hardest part is knowing when the relief will come, especially when you have been so dedicated to this treatment! I am not much help at all, but you are not alone in your fears! I hold onto the improvements I have made! For whatever reason it is going to take a lot longer then we ever expected! Like you said, what is your other option? No one else knows what to do with me, Dr B is the only one who has helped! That alone keeps me going! Hoping you a brighter day tomorrow! Thinking of you!
What bothers me about our limited lifestyle is inability to travel. I am paranoid about consuming sugar. I was in several situations in restaurants where I was mis-informed about ingredients. I don't want to take chances, I cannot trust restaurants any more.
I so want to travel but confined to stay home. Other than that, yes, I can live like that. But honestly, I cannot go to far from home because I have to eat 3 times a day.
So, when people say 'I can live like that', I believe them, I say it from time to time, too, mostly when I am in good mood. But.... is it what you really want? The thought of reaching the limit and place of no further hope depresses me. I want to know that there is a better place and I am on the way there. Settling for anything less, is depressing.
I don't know if my post was encouraging...
Just a few facts to look at before making serious decision.
I just re-read my previous
I just re-read my previous post, yes, if you look where you came from and project where you want to go, you don't want to stop mid-way.
Are you not getting any better? May be you're having one of those days today..
Thanks!Ironically, I am
Thanks!Ironically, I am having an ok day today!
Seriously- I ahve not really gotten much better. I may have subtle changes but my lifestyle is restricted in the same ways it always was. I was worse but then got a little better once I stopped eating really irritating food. I haven't had much marked change since then. That what is so scary- I always had good days and bad days. Really good days where I feel so hopefula nd life is great.
The biggest changes for me have been spiritually and emotinally although it doesn't feel like that today!!!!
I feel the same about travel!! But I think I would reach apoint where I just say Oh well- if I want to go somewhere, I might not feel good but at least I'll go.
I don't know...maybe a year from now I'll be totally symptom free. I guess I will just keep plugging along and try to stay present in the life I actully have.
cprince- big hug back! Funny because I alwyas feel really confidant for other peole just not me right now. I hope hope hope and pray pray pray that something turns the corner for you soon.
ladies- you are the best- thanks for being here for me. My kids are so abandoned right now!!! I have to go serve dinner.
HEY!
HEY!
Man, I am so sorry you feel drained. Who wouldn't? I agree with Blondy though, what other option do we have? I mean, if the options are stop treatment and know that no progress will be made, or take Western meds and know that they will screw us up, or continue treatment and at least know that there is POSSIBILITY that we will get better, while the other possibility is just to remain the same... it's still the best of all three options.
I also feel so confident about other people and then when it comes to myself I'm terrified and totally unsure. I say if you are really drained then give yourself a time frame. Say, ok, maybe I'll do this for another year and then evaluate?
I'm holding you in my heart right now and wish I could make it better for you.
So much love
Hannah
Hugs to you Deir!
Hugs to you Deir!
I think we've all felt the way you do right now, and it does sound like your progress has been slow and frustrating, but I have been reading the forum since right around when you first started writing in and the voice that you write with has grown and changed so much since the beginning. Even if you're physically healing slowly, you've clearly made huge mental and spiritual leaps throughout this journey.
This is my 3rd time healing from IC, and it is definitely the slooowest and I don't know why, but I know that the previous two times that I healed, there was a dramatic shift when things started to drastically improve really quickly after being seemingly the same for a very long time. I hope that will happen soon for you. I know that it's possible.
Thinking of you! The mental part is almost the hardest. xx
Claire
Deir:
Deir:
I think you will find the strength to keep on going. I am sorry about all the tests in life. THEY ARE SO HARD. You are a beloved and respected leader in our community. Your family is lucky to have you and so is the world. I don't have a crystal ball but I know it took Angela 4 years to get better. I hope that the path will become clearer soon and kinder.
Love, Bonnie
Wow, Deir, you have quite the
Wow, Deir, you have quite the fan club :)
I think it is so true what you said that we can be quick to encourage others, and not ourselves. Why, why, why is that? Having said that, I think you don't sometimes give yourself enough credit that you have really learned some profound lessons on this path. I mean, really difficult, and really profound.It comes out all of the time when you post. You posts always help me to stop, take a step back, breath, accept, and in that moment, things can change in your mind. At least for that moment. But we are human and cant tap into that wisdom and practice all of the time.
Having said that, the flip side is you have the absolute right to be pissed! (Is this a 40- something expression? I feel I am really dating myself...) You have the right to question, to be mad and frustrated. You can, and do know how to allow yourself to feel these important feelings so they don't have quite the same tenacious grip on you.
I am reminded of this recent, funny monologue by Luis C.K. Really funny. He is 45. I will not be able to quote him exactly. But he was talking about his life. He said he was excited that he was only half way done with his healthy ife, or else nearly done with his unhealthy life (Meaning, he might die at 50, LOL). His point was, he really had no idea. This is how I feel about treatment. You might turn a corner and gain a lot of traction soon (I think I am borrowing Mary's analogy). Or, it might be a while. You are still well within the bell curve for those in treatment (Where is Research Nerd?) I don't see you dropping out of treatment. Not now. You have worked really hard.
As for the mold thing, you are much like me in this regard. You want to fix it immediately. You will figure it out and take care of it. You will. Absolutely.
That was my tired, weird post. But I really wanted to post, as you have helped me so much.
xo
If we don't excel at health, the only other option is disease.
Thank you all so much. I will
Thank you all so much. I will keep going back to what helps me- Al Anon and praying and doing my best to take it one day at a time. I feel pretty bad about spreading negative energy here but the longer I have IC, the fewer people in real life I feel I can talk to about it because I don't want pity and I don't want them to tell me to find a new doctor. You know what I mean?
I always find that when I hit a serious wall, i come out if it stronger emotionally. I guess I am hitting wall number 143.