I am sorry :(

Deir, I am SO sorry!!! Please don't let the dark pit absorb you. I know it is SO difficult and I know you have had more than your share of pain to deal with but please stay with it. Dr. B. WILL get you there. I am praying for you right now!!

Deir- I'm right with you! I hit rock bottom this week also. Just know that your not alone. I think the best advice that I got this last week is to not think about the future at all with this disease. Think only about today and how your going to get through this one day. Then tomorrow think about tomorrow, and continue.... Continue until you can take on more things. But yes, it SUCKS. I so wish we all lived close to one another and could go for walks or have actual support groups that we meet up in person. It would be sooo nice. Keep emailing them, your paying them not just for your 30 min appointment but to help you in situations like this. We are all here for you.

Hey Deir, I have had quite a bit of bladder pain the past three weeks. It started the Tuesday before Thanksgiving and didn't let up until yesterday. I don't know what it was, but I have a hunch that I was fighting a cold/flu that either my students of girls brought around me......they are like little Petri dishes. Anyway, my bladder has always bothered me when I am fighting something- something awful- does this happen to you? Have any of your kids been ill? When I have a couple- month long bout with severely increased pain, it normally has do do with an illness I either ward off or eventually succumb to. For some reason it makes me feel better when this happens- it makes me feel that at least there is a reason instead of the IC Boogie Man, who I think - sometimes- actually exists;) Healing thoughts your way, Katie

Pretty sure the IC Boogie Man is REAL! haha love this!

Hi Deir and everyone! I'm so sorry you are having such a hard time! I think weather affects more of us then we realize, possibly that could be a part of the shift for you, and again maybe not?! I feel your pain! I have too have been really struggling and haven't spent much time on here because of it. Just feeling really alone and even Dr's aren't sure what to make of my crazy unending pain and weird test results. Going for more tests this week, because of ER level pains since  early October. Stress on top of stress has sent me over the edge I'm afraid! :( When Dr. M agrees to have me see a surgeon, I know I'm in over my head! Don't give up, there are so many factors that play into this crazy disease that even the stress over stressing about being able to handle more exciting things in life can be enough to set our fragile balance off kilter and quickly into a tail spin!!!! Keep emailing until you feel more comfortable, she needs to know if it isn't helping. Praying for you as always!

Hi Deir,

So sorry you're in a rough patch - I have been there with the emailing and the "good, stay put!" response and then 2 hours later everything goes downhill in a big way.  It's so hard.  For awhile when I was feeling truly horrible last winter, I realized that I needed to make sure I wasn't putting a sunny spin on things when I felt a bit better because it all would change so quickly, so I think you're smart to proceed the way you are.  I hope you're doing a little better this morning.  Please keep reaching out to us - if you need to email or call or whatever, I'm happy to listen!  I have been where you are and it is a rough place. I also totally "get" how you feel about exhausting those around you.  I think a lot of times people who are our support systems just feel so powerless and sad that they can't do more for us and it appears like anger but they just don't know what to do. 

And I'm sorry to read that so many others are having a bad time right now too!  Something about this time of year, the darkness, the weather, the expectation that comes with the holidays and family times and the marking of another year passing seems to bring out difficulties for many.  You're all so right that it's a one day at a time endeavor.  xxx

I just love you too dear Deir!! Hang in there!

Hi Deir, I'm so sorry you're going through a hard time too :( I've been doing the same with Matia, a couple of weeks ago I was on daily emails and daily changes, it IS exhausting and I felt so bad to keep emailing Matia when I know she is so busy. I wonder if it is the time of year, maybe weather related as well as holiday stress?

We are still trying to figure out things, but I did get a little improvement last week, tomorrow I will work on my list of improvements.

I know exactly what you mean about when you feel ok with your symptoms you feel great emotionally- I am the same, and I was asking matia about this this morning in my appointment, she suggested I make a list of all the improvement I have had and go back through my notes and list everything and anything that has improved to show myself things are getting better and also to send it to her. She said that although I don't feel good everything she has been giving me for the past 3.5 years has been giving my body what it needs to get better and to force things out and that I am improving underneath it all.

She also said that there are some patients who don’t seem like they are bad cases initially, that just take a long time to heal, (which sucks for us and the other long timers ;)) I seem to be one of the very sensitive to everything patients and I think its a sensitivity thing. I

And l agree with JessicaA, we just have to focus on now and today, which I have not been good at. I've had to stop hoping 'in one more year I'll be better', I think thats been the hardest part the disappointment when each year rolls around and I'm not there yet or anywhere near yet, I'm trying to accept I have a chronic illness and I don’t know when I will get better, I hope I will, and I really do have hope and belief that I will get there, the other week when I felt like giving up on getting better when I really let myself think 'maybe I won't get better and this is forever', something inside me wouldn’t believe that and it won't let me give up, and I think we all know this treatment makes sense even though a lot of the time its hard to make sense of it and hard to make sense of the way our bodies respond or react to it or don't, I'm just so pleased Matia and Boaz can make sense of it.

Also, I started reading a book by Anne Lamott- small victories- spotting improbably moments of grace http://www.amazon.com/Small-Victories-Spotting-Improbable-Moments/dp/1594486298 I'm not a religious person but I really love her writing, its inspiring and funny and real, and not necessarily IC related but good to get out of the funk my thoughts were in. (its probably been mentioned before on here)

heres to some comfortable days coming to us all soon!

claudine

Im glad it helped, it seemed all jumbled as I wrote it ;)

OK, I just worked on my list of improvements that Matia said I should do yesterday, here they are:

first got IC in September 2010, started treament in May 2011.

I started to get acne on my face the year before I got IC, when I had never had it as a teenager. My skin is clear most of the time now, better than ever really.

I never used to be hungry for breakfast and would sometimes not eat until 4pm each day- I cant imagine ever doing that now. I eat breakfast every day without fail and am usually hungry for my meals.

No more crazy sugar cravings at all!

I have natural bowel movements every single day. All my life before treatment I never had a BM every day, 2-3 years before treatment needed laxatives or a glass of prune juice.

Dentists marvel at my teeth! I had to have a deep cleaning 4 years ago, and was told I would probably need it again sometime, now dentists actually use the words 'spectacular' with my teeth and they all ask what I do to take care of them.

This past summer I was on all 3 probiotics 4 times a day with no other supplements, I could tolerate them on their own for a little while.

My periods are much more regular every 27-28 days and pretty much pain free and shorter.

Hair and nails grow extremely fast and both are in better condition now than before treatment. I no longer have dandruff.

The last real cold I had was september 2011.

I have had some lovely, amazing dreams at night this year and last, I don’t really remember ever having just wonderful dreams at night, they were always weird or disturbing in some way even the better dreams.

I usually have a period of comfort in my bladder from 12-3 and there have been times where I have had 3-4 hours without needing to pee- very rare, but it has happened.

Don’t want to jinx it but the crazy pregnant-looking bloat has pretty much gone after having it for 2 years!

I lost about 10 lbs in the beginning of treatment and more through different times of treatment but my weight is evening out at 116-118lbs these days.

Before treatment I had to pee every 10 minutes ALL Day (it was hell, exhausting and depressing), and every hour at night, I have definitely improved sine that. I have only have the terrible all day, every 10 minute frequency, a couple of times this year where it felt as bad as before treatment. I still have frequency every day, usually in the late afternoons and evenings, and most days during the mornings and early afternoons it's 1-2 times an hour and sometimes once an hour or longer on a good day.

I have done a lot of creative things during treatment, I feel inspired to paint and write a lot of the time and have still had the drive to get my work done and achieve things. I did do a lot of creative things before treatment as well, I'm adding this in to say even with the IC and treatment I have still been able to pursue my interests and passions, and have got better at them despite being uncomfortable most days and having tonnes of migraines, the creativity inside me still gets out and wants to.

‪I used to be a size 0-2, was obsessed with staying skinny, but I always felt FAT even though I was really skinny, now I am a size 4-6 and I actually feel thin. And I'm bigger than I used to be, so my body feels like it should, its healthier.‬ And I eat so much food every day, more than my husband, and I stay slim because its good helathy food.

think that's my list... for now! :)

Beautiful! Thanks for sharing!

C, love that list! Thanks for sharing.

I've been having a challenging time as of late too. I think partially because I'm coming up on 1 year in treatment and though I've made huge leaps forward, I wish I was further along than I am. Waiting for the upswing in treatment when I feel great and look great all the time, hahaha. It's a journey. I've been having a particularly hard time with the emotional aspects of treatment because I think I'm still having a fair amount of die-off and still need to do a lot of cleaning out, so the anxiety along with the regular headaches have been very challenging. I feel like my anxiety is worse than it was before I started treatment (though I've had some difficult life stuff too), but I just keep hanging on to the hope that it will eventually even out. 

Me too Ktgicama, hoping it will even out for everyone! I felt a little bit better after writing that list, just to acknowledge those improvements, but my bladder has just been awful, I'm having more discomfort that I think I had in the beginning. I would swap those improvemenst to have just improvement in my bladder and to be able to sleep. Matia has been amazing trying to help but we can't seem to find the right combo, its very frustrating and I'm just hoping something really good is coming once I'm out of this rough patch and that nothing lasts forever, everything is constantly changing. It has to improve at some point :)

The frequency for me is the last thing to improve, it is a lot better now though, there was a time I was up at night every 45 minutes every night this was well into my 2nd year of treatment, it gradually started to improve down to getting up 4 times and now I get up 1-2 times a night. This month I will have been in treatment 2 years.I don't really have pain anymore just an awareness of my bladder. It is great to look back and see what improvement you have had though, I used to do that a lot to keep me going.