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I have been doing better for over a month- which is HUGE for me!!! I am attempting to go on a retreat this weekend- a big deal for me since i very rarely travel and never without my kids. Anyway- since wed night, I have not been doing as well and now I am really regretting signing up and paying for this at the same time that I am just feeling so completely DONE with all this crap. I was feeling like I was getting my life back and now I am on day 3 of not well again and it is so hard to nor feel like "Here I go again- now it will be another 3 months before I have a good spell" I am just so done. I want to be free. I am worried about needing to pee 6 times before I fallasleep- the bathrooms are in the hall so I am bringing my kid's potty and a jar so I could sneak the pee into the bathroom in the morning. Worried about the food and explaining. Worried that I will not be able to relax and enjoy this "Celtic Music and Spiritualty retreat" which sounds like just up my alley. Worried since I have to drive my husband's truck and it always makes me worse.
Argh- thanks I needed to vent. This is such an awful disease and I just want my life totally back NOW
If I ever decide to create a
If I ever decide to create a Facebook page for IC I think it will be called something like "I want my life back now, damn it!" Since we are enjoying our first sunshine and first sign of light here in Ohio this winter, I am in an optimistic mood. ;) So, my friend, here is the good news....... You are healing and it is tangible now! Even if you have to pee in a jar this weekend, you will not be bound to inconveniences for long! Go, enjoy the music and the spirituality and just try to roll with it as much as you can.....knowing that you have had a month...., Wow! That's awesome! of some solid days.
Hi Deir, I'm so sorry to hear
Hi Deir, I'm so sorry to hear you're feeling down, and are stressed before your retreat (which sounds lovely btw) I too have had a few months of not doing well at all and am nearing 3 years in May of treatment. It's only been this week that I got almost a full nights sleep in months, (Matia has been tweaking things to try to get me more comfortable, I am very grateful? but It's hard to be positive for so long when you're not better yet, I know. I don't have many words of wisdom just to say I know how you feel, and hang in there, we will get better, I'm sure of it and these days will be a distant memory. The fact that you've been doing better for a month is huge and a good sign things are getting more balanced :) Maybe once you get to the retreat you will improve, it might be the anticipation of 'what if I have a flare, there' that is causing the symptoms now, I seem to get worse when something is planned too. The jar is a good idea. And I know 'explaining' sucks, and I try to be brief these days so as not to go over all the details again and again, it's nice to escape talking about even, but from the sound of the retreat I'm sure people would be sympathetic if you did have to explain. Sorry this isn't much help, but stay strong :)
Claudine
Deir, I have gone to many
Deir, I have gone to many retreats (yoga, meditation, relaxation, blah, blah) things with IC and I have never regretted going to any of them, even if I've had a big flare in the middle. You may not feel perfect, but you are doing something for yourself, which is HUGE, especially with three kids. I am so glad you're going to give this a go. And do whatever you need to to feel comfortable. Pee in a jar all you want! Bring plenty of food that you can eat or don't be afraid to leave in the middle to search out food that works for you and bring it back with you. I have found that a nice foam cushion in the car really helps with the bumps and irritation if you can find something like that at Napa or some other car place. I know you're just venting and not looking for solutions, but I guess my point is to not let IC rule your life, take it back as much as you can and even if it is not all that great at first, you're doing something just for you and that is really important. Good luck, I hope you have an amazing time! And I agree with Katie that you're healing!
Oh Deir! I hope you have a
Oh Deir! I hope you have a great time and agree this will be a great retreat for you! Time to get away and focus on nothing but you! You are turning a corner, one you have been waiting for. Take each moment in stride, sending you nothing but positive vibes! Let us know how it goes. Will be saying prayers for you this weekend!
Deir...release it all and
Deir...release it all and have a wonderful time! Everything will work out. I have pushed myself many times while in horrible pain & have never never regretted it. These leaps of faith are a sign of healing & it is another step closer to getting your life back. Thinking of you
xxxooo
Amy
Wish I had better news to
Wish I had better news to report. I had a horrific flare and could not sleep- was panicking and so so angry. The program itself was amazing and I am trying to believe that there was some healing there. I ended up coming home last night so I didn't torture myself for another night. Today, I am feeling awful again and just so hopeless. My husband is now really upset and i am just so broken. trying to get back to the peace I had for a few weeks there on and off
I am so sorry Deir! Wish I
I am so sorry Deir! Wish I had better words to comfort you, but I don't. Just wish I could reach through the screen and give you a hug! Don't beat yourself up over this, you are not broken. You will get back to this good place, maybe it was just a little too soon and the added stress of planning ahead pushed you over the top? Thinking of you my friend! xxx
Thanks Christina and thanks
Thanks Christina and thanks eveyone else too- forgot to say that earlier!At one point in the program last night, the presenter was talking about St Bridget and her healings. She went around to each person and blessed them with a healing prayer using water from Knock and Lourdes and St Bridget's well (Catholics- you get this) I was crying and crying. Everyone was reachign their hands towards me and it was powerful. Ther has to be some healing in that. Can't believe I was at a religious retreat!!! IC certainly brings out different sides
HUGS Deir!!! I'm sorry to
HUGS Deir!!! I'm sorry to hear that it didn't go as planned, but I'm so glad you went! That's a big step! And this latest flare is just another step in your healing. You know you can do this - don't discount the great advances you have made lately! I get the Catholic thing - and that is awesome - all good stuff! Keep going, focus on the positive, you got this :)
Dear Deir,
Dear Deir,
Thank you for sharing with us. I'm sorry that all didn't go as any of us would have liked. HOWEVER - you went - you put your toe back into the world - something that I find tremendously hard to do when so much of my focus is on feeling safe. The other day my therapist asked why I was afraid of death (don't get me wrong - I have nothing terminal...of course, I add "at the moment") It then dawned on me, that because of all the physical and emotional crap that I'd been through, I really didn't know how to live any more. In some strange, twisted way, figuring out how to live probably scared me more than figuring out how to die. Then I went to the movie the Monument Men. I was having less anxiety and was in a reflective mood. I sat there and watched the emptry bombed out streets in France. The screen was quiet, it was night, any people that had lived there were long gone. I began to wonder what their life, in those horrendous moments, must have been like. I knew that controlling my owns fears and ocd was not going to be miraculousy cured by knowing that so many people were so much worse off than myself. However, for that moment, I had such a fleeting sense of wisdom.
Denise- That is beautiful. I
Denise- That is beautiful. I think I know exactly what you mean. When I first got sick with IC, I looked fine on the outside to most people but I always say "I didn't know how to live". What has helped me HUGELY is 12 step recovery through Al- Anon. That being said, I still go the dark side, like this weekend, but you are right, I am trying to dip that toe in the world!!
ClaireC- thank you as always for keeping me on the up and up.xo
Denise- That is beautiful. I
Denise- That is beautiful. I think I know exactly what you mean. When I first got sick with IC, I looked fine on the outside to most people but I always say "I didn't know how to live". What has helped me HUGELY is 12 step recovery through Al- Anon. That being said, I still go the dark side, like this weekend, but you are right, I am trying to dip that toe in the world!!
ClaireC- thank you as always for keeping me on the up and up.xo
Deir - oh love. This whole
Deir - oh love. This whole thing really is SO crap. I do get the catholic thing, but sometimes it doesn't quite do the job. In my really catholic moments I ask myself what I'm supposed to learn from the experience. Haven't quite figured that bit out........
I've been ranting about why my body feels like it's falling apart, looking at my healthy friends who just buzz along, full of energy and health and it makes me sooooo 'why me?' Then I beat myself up mentally about how crap I am, as I can't do all I'd like with the kids, and that I take antidepressants etc etc. BUT you have had nearly a month of better. This will happen more and more often. You DID go to the retreat, even if you came back early. Baby steps. Xxxx
((Hugs)) Deir I am so glad
((Hugs)) Deir I am so glad you went. I know it was scary and hard and it sucks that you had a flare. But you would have had the flare anyway, right? So at least you were having new experiences. And this window of good is a good sign. I know you said you have had them before, but I think that the windows that come further into treatment are different and you can't compare them. It is a new level of healing that is bringing you closer to turning the final corner towards the bladder bliss you will get eventually!
For those Catholics (I am Episcopalian so I kind of get it) the book that helped me so much when I lost my baby 9 years ago was a GREAT short, lovely book written by a Rabbi some of you may know, called "Why Bad things Happen to Good People". It really turned around some of the thinking on why things happened in my life. Less about the what happened and more about the response which God helps us with. Anyway, it was very comforting to me. xo
If we don't excel at health, the only other option is disease.
So sorry. Hope next time it
So sorry. Hope next time it'll go perfectly smooth. And yes, I hope there will be a next time, hope you'll give it another try some day and that time will be perfect. But first of all, I hope so much that it won't be another 3 months until you feel well again, but rather that the proportions will shift and the good windows will last longer each time and the bad ones shorter. You deserve it!
Thank you Claire, Mimi and
Thank you Claire, Mimi and nika!! I fell so much love!
mimi I love that book so much. it really helped me too. I wish I could meet Rabbi Kirshner!
ps -I also love his book
ps -I also love his book about the 23rd psalm
wow- I know I am having a bad
wow- I know I am having a bad day when I am on here again!! I just feel like every time I try to do anything out of the ordinary routine, I get so much worse. I am not sure if I would have had a flare that night if I hadn't have gone. Every littlte trip I have tried to take these past 3 years has been so stressful. I now feel like it is a terrible ccyle, I start getting worse because I am afraid I will get worse and I am so stressed so I do then each time gets harder. When if ever is this going to change? I feel like my life is getting smaller and smaller and that is scary.
Does anyonen else feel like this? How do you cope with it - those of you especially long timers with little improvement
Ugh! I could scream I had a
Ugh! I could scream I had a long post and just vanished before my eyes! I could cry, maybe I will! :( Anyway, I totally understand what you are saying. I am a worrier always have been and probably always will be. You are a strong woman, a great mother and wife. Try not to set so many expectations on yourself, live in the moment just a little. We are all fighters or we wouldn't still be here 3 years later still in pain! I don't know if because I have dealt with pain and GI issues pretty much my whole life if I don't know any different or am I just that stubborn that I absolutely refuse to let anything get in my way, especially an event or trip that I am looking forward to?! Sure I may moan and groan all the way, but just to be able to have the opportunity to be with friends and family makes it all worth it! Just know you are getting better, it's ok to feel sad and angry, but try to let go of these big expectations you set for yourself, being with you in treatment from the beginning, I know you have always set such high expectations for yourself, and disappointed when you hit the year mark and when you didn't meet this expectation of what Dr. M had first outlined for you. You are a planner and these expectations you place on yourself are obviously having an impact on you when you have a fun trip or occasion approaching. I am just writing observations, hope this isn't coming off as pointing fingers. I feel the same about myself, always afraid or feeling guilty of letting others down. Trust me you aren't, time for both of us to let go and embrace the journey and all the bumps!!!! You are not alone! Hugs!
I feel like this Deir. I wish
I feel like this Deir. I wish there were some herbs which helped to calm us down mentally. I'm currently trying counselling and mindfulness, and, of course, for now, I'm on AD drugs. Sometimes I think I'll be on them forever - I'm suicidal when I'm not on them. The future feels terrifying when your health is dictating your life. Are you on any herbs from dr M to help with this side of things? Stress does impact the bladder, and it can be a viscous circle sometimes stress/bladder=more stress/more bladder and so on. Herbal equivalent (safe, non addictive, obviously) to Valium! That's what Matia needs to come up with!!!! You've come all this way without anything propping you up except your own inner strength. I have so much admiration for you. Xx
Claire- the vicious cycle is
Claire- the vicious cycle is what I am so afraid of and I feel like it has gotten worse not better! I have done everything i think I can to cope and sometimes it is just too much (((hug))))
Christina- youa re right , of course, I need to way lower my expectations. Thank you so much. Also- thanks for re-writing after your post was erased!! I just wish I had never asked Dr M how long she thought it would take me.
Ugh. Deir, would you say it's
Ugh. Deir, would you say it's bad / counter-productive to ask the doctors what they think it might take us? Have my first appointment soon and lots of doubts. I think it's only human to want to know exactly how the doctors value our case and perspectives, but as you say, maybe it's better not to ask... Don't know. You see, I'm a worrier too ;-) I understand what it means to suffer in advance and also the vicious cycle: the worse it gets, the more you worry; the more you worry, the worse it gets. I'm like this too, not so much in this particular disease (not yet, anyway), but in other areas of my life. I don't like giving advice nor do I think myself capable of it, but I would like to say, maybe you could try to get help for the emotional part of the ailment first, and if you are helped, the physical part will improve too? What I want to say is that I would probably seek some psychotherapy that could help me to deal with pain, despair, hopelessness, uncertainty, it seems too much of a burden for a person sometimes to cope with without professional help. Maybe the physical part gets better too, and if not, at least you are then better equipped to deal with it. And if nothing of this occurs, at least you will have the opportunity to vent and cry all you need for an hour or two, and that can be helpful too. I don't know if I have helped you at all, I wish I could.
Hi Nika and Deir.
Hi Nika and Deir.
Welcome Nika
I really think that the mind body connection is huge. I'm not sure which leads and which follows - I kind of think that they take turns. I have also become a believer that as my body gets healthier, it takes me into a journey with memories from the past. Those memories, buried deep within myself, had been left in the darkness by a child who never dealt with them. So,what I really love about Dr. Matia, is how much she supports all of my gut wrenching therapy. This path that we're on, for me, has taken a huge toll mentally. All of the strange symptoms that transpire through treatment - have often scared the hell out of me. Add to it the fact that we've not taken the conventional road - mostly due to the fact that there were no answers there - has left me feeling isolated and vunerable. This treatment isn't recognised, by insurance or by many of the doctors that we may still need to see. If you go to them, looking for some miracle pill, to either help physically or mentally, you stand a grave chance of making the IC worse. If you tell them that you don't want to take what they have to offer, one can hardly blame them for just not getting it - after all, they didn't actually drag you into their office. Sorry - babbling. Although, if you read the lines of some of us old timers - you do start to hear reflection slowly replacing the panic - something that I heard in Honey Bees words on another post. I wish that I could tell you all, that after all of these years, that I'm as OK as Honey Bee is in trusting being where I'm supposed to be. However, I truly believe that I'm getting closer. It hasn't been done gracefully - it's been done kicking and screaming.