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Ok. I have been doing pretty well physically and mentally but I had a mini meltdown last night. There are multiple stress factors- the baby's really sick, I have PMS, oh and I have IC! LOL anyway- Dr B tried to add a tiny amount of bifido again and I flared in a miserable way. I was so upset because it feels like we can't add things without reaction. Here's my issue- i wish I had a clue as to what each addition or change means-YKWIM? I know I get into mental trouble when I start catastrophising about what I "think" it means. I know this is part of my control issues and I am working on it. This treatment is so hard ot comprehend and I am someone who has always had a good handle on natural treatments/health (or at least i thought) I kind of wish i didn't know as much because I don't know enough toi make me feel better. Just enough to stress me out!
Not even sure what i am asking but maybe someone understands. How so you cope withthe unknowns about this treatment?
Thanks
deirdre
Hey Deir, I completely
Hey Deir, I completely understand what you are saying. I find it frustrating to not completely understand what the specific changes of treatment "mean". I get the end goal, but I am not sure what the significance is of all the protocol changes. I suppose that if I understood it all, I would be healed already....lol.
To answer your question... (I think:) I have found that a few things help. I have reached out to some of the other patient emails listed on this site and of the group that I emailed, I received a number of encouraging and wonderful stories. That helped me with my confidence in treatment tremendously! I write down the questions I have for Dr.B ( and if they are still rolling around in my brain after a day or two) about treatment and I ask her what we should expect with a protocol changes, what I should look out for and what the significance of this specific symptom I am displaying. And.. I have started doing energy work with a practitioner I absolutely adore. (Dr.B approved;) It helps me mentally and physically to make some sense out of the chaos this treatment/disease present sometimes.
I am certainly not saying I am progressing through this with grace and certainty, but I feel I am not crying everyday anymore.... that must mean something.
Katie
Thanks Ladies- you totally
Thanks Ladies- you totally get it. Glad I am not alone!
Hi Everyone, I find it
Hi Everyone,
I find it comforting that everyone going through this has similar thought patterns. It makes it a bit easier to feel that I'm not crazy and am having a common response to a difficult situation, you know? Deir and Katie, I can't imagine going through treatment and taking care of small children at the same time, you must have to call on such serious reserves of strength- I know there's not a lot of choice in the matter, but I really admire your courage and stamina.
I know what everyone means about trying to make sense of the ups and downs. With my most recent serious flare up, I had the hardest time because there was no "reason" that I could pin it on. Usually my mind comes up with some controlled, logical answer as to what's going on, but the free-form crazy pain was just really arresting for my brain. I think it's our nature to try and make sense of everything rather than just experience what's happening. It's very hard to re-wire my way of doing that, but I think it'd benefit me immensely! I've been working with this great transpersonal counselor on ways to create new neural pathways in order to respond differently rather than habitually to pain and anxiety. It's a reall work in progress...I was just in the kitchen fretting over what to snack on since I'm feeling afraid of starches and don't want to eat too much carrots and was that cabbage ok since I left it out all afternoon blah, blah, blah. Isn't it exhausting?
And with my last flare Matia took me off bifido for the 1st time since May. I have been worried that it means I'm backsliding, but then I've been reading "The Web that has no Weaver" and was thinking about how our bodies are energy (a dense energy, but an energy nonetheless) and they're always changing and that it's not helpful to view change as deterioration. It's just change. And that maybe I should just enjoy that my bladder has not bothered me AT ALL today or 2 days ago (not to brag, haha) and appreciate the bifido break while it lasts!
Claire, Thank you for the
Claire, Thank you for the sweet compliment! My girls are absolutely my world and when I love being a mom... they give me strength on my tough days.
CONGRATULATIONS! on your bladder success today (and the past two)....I think you should brag about that. Goodness knows I feel no shame in it..lol.. it's hard won! I completely understand the food struggle... it is so exhausting trying to figure out how(and what) to eat. There are some days when it would drive me completely nuts (not that I can eat those either;) with all the "rules" of eating. I would go through all the thoughts in my head regarding meal decisions and my husband would just shake his head, smile and say "I am exhausted just hearing you decide what to make for dinner, let alone making it".
As far as protocol goes, I have taken 1 mega and 1 bif (along with bunches of other things) for months now. I didn't seem to have a hard time accepting the probiotics, but from what I have read, it is very common to have the probiotics taken out at some points and reintroduced at others. I was, however, put on three RP 3x per day to calm my most recent flare and it feels like it took more effort to calm the flare this time... maybe I am adjusting my perception of pain since I have not had any above a 3 in three days and counting (I am not bragging either;)
Thinking of my IC Ladies,
Katie